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How older adults and the informal carers prevent falls: An integrative review of the literature

Wilkinson A, Meikle N, Law P, Yong HJ, Butler P, Kim J. (2018)

Abstract
Falls in older persons are prevalent and costly for the individual and the health system. Falls prevention guidelines have been developed from best evidence to minimise falls in older persons.

Aim: To synthesise the literature on falls prevention strategies used by community dwelling older persons and/or their informal carers and to compare the commonly adopted strategies with those recommended by falls prevention guidelines.

Data sources: Health sciences databases for full text articles published in English plus reference list searching of included articles.

Review method: An integrative review approach. Studies were included if they identified fall prevention management strategies used by community dwelling older adults and/or their informal carers. Quality appraisal was undertaken using appropriate Joanna Briggs Institute critical appraisal tools. Information relevant to the aim of the review were extracted and coded into categories then inductively sorted into sub-themes and themes.

Results: Of the seventeen studies included in the review, eleven identified older adults' falls prevention strategies, two investigated fall prevention strategies used by carers, and four explored perspectives of older persons together with their carers, representing the perspectives of an estimated 501 older persons and 102 carers. Strategies used by older adults arose because of self-awareness about their changing physical ability, and advice and support mainly from family or friends. Carer fall prevention strategy was predominantly around protection of the older adult from falling by discouraging independence.

Conclusions: The fall self-management strategies adopted by older adults and their carers to prevent falls, in the main, do not align with international best practice fall prevention guidelines.

Hur bedömer man behov som kolliderar? En kvalitativ vinjett- och inervjustudie om biståndshandläggares hantering av etiska dilemman i ärenden där makar har olika behov och önskemål

Juslin Ellen (2015)

Det övergripande syftet med denna studie är att genom undersökning och analys söka en
förståelse för hur individens självbestämmande beaktas och hur intressemotsättningar mellan
makar hanteras av några av Stockholms stads biståndshandläggare. Studien fokuserar på
intressemotsättningar i form av att den ena maken/makan vill bo kvar hemma medan den
andra maken/makan inte orkar med den påfrestning det innebär att ha en vårdkrävande
make/maka i hemmet. Studien innefattas av tio av Stockholms stads biståndshandläggares
ageranden och reflektioner kring de etiska dilemman som uppstår i ärenden där makars behov
och/eller åsikter om stödinsatser kolliderar. Syftet kan benas upp i följande övergripande
frågeställningar:
- Hur reflekterar handläggare kring självbestämmande för en hjälpbehövande äldre
person och kring stöd till maken/makan?
- Hur reflekterar handläggare kring möjliga ageranden då den äldre personen och
dennes makes/makas åsikter går isär?
- Hur uppfattar biståndshandläggare handlingsutrymmet för att kunna stödja båda den
äldre och dennes make/maka?

Hur hjälper jag mitt barn?

Tytti Solantaus, Antonia Ringbom (2007)

Boken vänder sig till psykiskt sjuka föräldrar och försöker förklara de känslor och reaktioner barnet kan ha inför föräldrarnas svårigheter. Man tar upp skuldkänslor och skam samt uppmuntrar till att söka hjälp från någon annan vuxen eller t ex barnavårdscentralen.

Hur kan kommuner planera för äldres boende nu och i framtiden? : Resultat och erfarenheter från projektet Inte(GR)erad bostadsplanering med fokus på äldre

Nordenhielm, S (2012)

Idag finns inte tillräckligt med goda och tillgängliga bostäder som kan möta behoven hos en åldrande befolkning. Kommunerna äger frågan om bostadsplaneringen för äldre, men vilken kunskap och information behöver kommunerna för att kunna planera för goda och attraktiva bostäder för äldre? Och hur kan den kunskapen hämtas in? I projektet Inte(GR)erad bostadsplanering med fokus på äldre har FoU i Väst/GR, GR Planering och GR-kommunerna Ale, Härryda, Kungälv, Mölndal och Tjörn samverkat kring dessa frågor. I denna skrift sammanfattas arbetssätt, resultat och erfarenheter från projektet.

Hur många barn växer upp med föräldrar som har alkoholproblem? – Resultat från en systematisk litteraturöversikt

Ramstedt Mats (red) (2019)

Sammanfattning
Mot bakgrund av osäkerheten om hur många barn i Sverige som växer upp med föräldrar som
har alkoholproblem genomfördes en litteraturöversikt inom området av den internationella
vetenskapliga litteraturen och av den nordiska "grå litteraturen", dvs. studier som inte publicerats i vetenskapliga tidskrifter. Tanken var att resultaten i dessa översikter skulle ligga till
grund för att ta fram skattningar av hur stor denna grupp av utsatta barn är i Sverige idag.
Översikten identifierade endast 23 vetenskapliga studier som skattat hur många barn som växer
upp med föräldrar som har alkoholproblem. Dessa studier var begränsade till USA, Norden och
Storbritannien. Genomgången av nordisk grå litteratur identifierade ytterligare 9 studier.

Hur påverkas vuxna barn av att ha en åldrande förälder?

Norén, Anna (2020)

Sammanfattning
Denna rapport undersöker hur vuxna barns arbetsutbud och hälsa påverkas av att ha en åldrande förälder i behov av omvårdnad. I uppsatsen undersöks det ökade omvårdnadsbehovet dels under föräldrars sista år i livet och dels som följd av en stroke. Effekten av att ha en åldrande förälder med förhöjt omvårdnadsbehov studeras genom att jämföra söners och döttrars sysselsättning, inkomst och hälsa före och efter det att föräldern dör respektive får en stroke. Studien visar att sysselsättning och inkomst sjunker något under förälderns sista år i livet, men att effekten är störst under det år, och året efter, förälderns död. Det finns också tecken på att döttrars sjukskrivning ökar det år föräldern avlider. Däremot påverkas inte sysselsättning och inkomst bland vuxna barn till föräldrar som drabbas av stroke. Det finns heller inga tydliga könsskillnader i effekterna. Sammantaget tyder resultaten på förälderns omsorgsbehov har en begränsad påverkan på vuxna söners och döttrars arbetsutbud.

Hypnosis treatment of sleeping problems in children experiencing loss

Hawkins, P. & Polemikos, N. (2002)

There is considerable research and clinical evidence that children who experience loss become traumatized. The results of traumatization include sleeping problems, for example difficulties in initiating sleep and sleep terrors. Psychological intervention programmes, including hypnotherapy, have been shown to have some success in helping children to overcome their sleeping problems. In the present study, a new paradigm qualitative methodology was used in which a small group of children were taught self-hypnosis to manage their sleep difficulties. Within the group, the children's experiences of utilizing self-hypnosis at home were discussed, and a consensus reached concerning its effects. Complementary data were collected through interviews with caregivers and by completion of the Southampton Sleep Management Schedule (Bartlet and Beaumont, 1998). From the study it was concluded that young children can be taught self-hypnosis in order to manage their sleeping problems effectively. Furthermore, the present study demonstrated that children can be involved in a collaborative research group.

Hälsa och välbefinnande för barn och ungdomar med funktionsnedsättning - En vägledning genom WHO:s hälsoklassifikation ICF-CY

Adolfsson Margareta (2015)

Ett barns hälsa och välbefinnande bestäms av så mycket mera än att vara fri från sjukdom. Världshälsoorganisationen (WHO) beskriver hälsa som fysiskt, psykiskt och socialt välbefinnande. Detta visar att ett barn med funktionsnedsättning kan må bra om det ges förutsättningar att fungera i de miljöer där barnet vistas regelbundet. Ett barns vardagsfungerande kan bedömas och beskrivas på ett allsidigt sätt med stöd av WHO:s hälsoklassifikation Internationell klassifikation av funktionstillstånd, funktionshinder och hälsa, barn- och ungdomsversionen, ICF-CY. Den bidrar med en modell som fokuserar på funktionella beskrivningar av barnets vardagssituationer som ett nödvändigt komplement till en diagnos. Eftersom en diagnos aldrig kan ge information om ett individuellt barns fungerande, behövs det funktionella perspektivet vid planering av åtgärder som kagöra ett barn mera delaktigt i olika aktiviteter. Socialstyrelsen förordar en ökad användning av klassifikationen, vilket har gjort att många verksamheter, som arbetar med barn och ungdomar, utvecklar arbetsmodeller som bygger på ICF-CY. Därför behöver föräldrar, liksom alla andra som finns runt ett barn med funktionsnedsättning, kunskap om den värdegrund som bildar bas för hälsoklassifikationen.
Kunskapsöversikten vägleder läsaren genom ICF-CY och lyfter fram exempel på hur den kan bidra till en överblick över ett barns hälsa och välbefinnande. Vägledningen vill underlätta samverkan genom att belysa hur ICF-CY kan bli en gemensam struktur och ett gemensamt språk för formulering av ett barns problem och behov ur olika synvinklar. Även om de exempel som beskrivs fokuserar på barn, är värdegrunden och innehållet i klassifikationen lika användbart för vuxna. Vägledningen är inte tänkt att läsas i ett streck från början till slut. Innehållet är ordnat i flera delar så att läsaren först ska få en bakgrund med en övergripande information om ICF-CY för att sedan lotsas allt djupare in i såväl modellen som klassifikationen. I slutet presenteras hur klassifikationen kan användas för att definiera ett barns problematik. Förhoppningen är att läsaren ska kunna ta fram skriften och hitta de avsnitt som kan ge ett stöd för att beskriva ett barns aktuella situation och behov inför en habiliteringsplanering, upprättandet av åtgärdsprogram, en vårdbidragsansökan eller vid övergången från en skola till en annan. Den kan på det viset ses som ett uppslagsverk i ämnet barn och ungdomars hälsa och välbefinnande, eller kanske lika gärna, i barn och ungdomars vardagsfungerande.

Hälsans mysterium

Antonovsky, A. (1987)

Den mänskliga tillvaron är full av påfrestningar – motgångar, krav, konflikter och olika slags problem som måste lösas. Vad är det som gör att en del av oss klarar av svåra påfrestningar med hälsan i behåll – och till och med kanske växer och vidareutvecklas av det? Detta är den fråga Antonovsky ställer. Hans svar är att motståndskraften beror på vår känsla av sammanhang, KASAM (på engelska SOC, Sense of Coherence), dvs den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar. Han diskuterar hur denna känsla byggs upp hos barn och vuxna och på vilket sätt den inverkar på vår hälsa. Han presenterar ett testinstrument för att mäta den och han redogör för olika forskningsresultat som stöder hans tes om dess stora betydelse. Boken gavs ut 1991 i Sverige och har sålt i 40.000 exemplar sedan dess. Den har betytt mycket för vändningen inom medicinsk forskning, från en total koncentration på sjukdomsförloppet och patogenesen till ett studium av friskfaktorerna och salutogenesen.

Hälsans mysterium

Antonovsky A. (2005)

Vad är det som gör att en del av oss klarar av även mycket svåra påfrestningar med hälsan i behåll – och kanske till och med växer och vidareutvecklas av dem? Författarens tes är att motståndskraften beror på vår känsla av sammanhang, d v s den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar.
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Hälsoekonomisk studie av barn och vuxna med fetalt alkoholsyndrom

Ericson Lisa, Hovstadius Bo, Magnusson Lennart (2015)

Denna hälsoekonomiska studie är en beräkning av samhällets årliga kostnader för fetalt alkoholsyndrom (FAS) i Sverige. Att dricka alkohol under graviditeten kan skada fostrets utveckling, framför allt utvecklingen av dess hjärna, och kan leda till allvarliga och livslånga funktionsnedsättningar och funktionshinder. FAS ör en medicinsk diagnos som beskriver de skador som kan uppstå då fostret exponeras för alkohol. Den årliga totala samhällskostnaden för FAS år 2014 beräknades till närmare 14,4 miljarder.

Landstingens och kommunernas möjlighet att samverka kring vård och omsorg

Direktiv (1999:42). (1999)

En särskild utredare tillkallas med uppgift att beskriva och analysera de problem som finns i dag vid samverkan mellan landstingens hälso- och sjukvård och kommunernas vård och omsorg på områden där det finns behov och intresse av att samverka. Utredaren skall vidare lämna förslag till lösningar som förbättrar möjligheterna till samverkan mellan kommuner och landsting på dessa områden.

Language development and language disorders

Bloom, L., & Lahey, M. (1978)

This book provides a synthesis of research findings in normal language development as well as a practical approach to the evaluation and treatment of children with language disorders. Its 21 chapters are divided into six topical sections: language description, normal language development, deviant language development, goals of language learning based on normal development, correlates of language disorders, and facilitating language learning. Each chapter concludes with a summary and a list of suggested readings. The book includes appendixes that set forth conventions for transcription of child language recordings and video recorded data, present definitions of language content categories, and list instruments for assessing language and language-related behaviors. An extensive bibliography of related resources and author and subject indexes are also provided. (GW)

Language within our grasp

Rizzolatti, G. and M. A. Arbib (1998)

In monkeys, the rostral part of ventral premotor cortex (area F5) contains neurons that discharge, both when the monkey grasps or manipulates objects and when it observes the experimenter making similar actions. These neurons (mirror neurons) appear to represent a system that matches observed events to similar, internally generated actions, and in this way forms a link between the observer and the actor. Transcranial magnetic stimulation and positron emission tomography (PET) experiments suggest that a mirror system for gesture recognition also exists in humans and includes Broca's area. We propose here that such an observation/execution matching system provides a necessary bridge from'doing' to'communicating',as the link between actor and observer becomes a link between the sender and the receiver of each message.

Neglected victims of murder: children’s witness to parental homicide

Burman, S., & Allen-Meares, P. (1994)

Abstract
Children who witness parental homicides are emotionally traumatized, stigmatized, and deeply scarred by a terrifying event. They often exhibit debilitating symptoms comparable to those of posttraumatic stress disorder. As attention is focused on the deceased and on the perpetrator of the crime, the child witnesses inadvertently become the neglected victims. A case report of two such children who observed their mother being murdered by their father is presented. Theories of psychosocial development and social learning guided the assessment and intervention phases. Behavioral and expressive therapeutic treatment strategies that helped the children work through the resultant anxiety and underlying grief are delineated, and family intervention practices that served to improve interaction and communication patterns are described. Further discussion focuses on the potential intergenerational cycle of violence and on a sociocultural perspective of family violence within an ecological framework.

Neglected victims of murder: children’s witness to parental homicide

Burman, S. & Allen-Meares, P. (1994)

Children who witness parental homicides are emotionally traumatized, stigmatized, and deeply scarred by a terrifying event. They often exhibit debilitating symptoms comparable to those of posttraumatic stress disorder. As attention is focused on the deceased and on the perpetrator of the crime, the child witnesses inadvertently become the neglected victims. A case report of two such children who observed their mother being murdered by their father is presented. Theories of psychosocial development and social learning guided the assessment and intervention phases. Behavioral and expressive therapeutic treatment strategies that helped the children work through the resultant anxiety and underlying grief are delineated, and family intervention practices that served to improve interaction and communication patterns are described. Further discussion focuses on the potential intergenerational cycle of violence and on a sociocultural perspective of family violence within an ecological framework.

Negotiating lay and professional roles in the care of children with complex health care needs

Kirk, Susan (2001)

eywords:
parental involvement;children with complex health care needs;role negotiation;nursing roles;community-based care
Negotiating lay and professional roles in the care of children with complex health care needs

Background. Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).

Aims of the paper. To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.

Design. Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.

Findings. From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.

Conclusion. This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent–professional relationships that are characterized by conflict rather than partnership.

Negotiating needs : processing older persons as home care recipients in gerontological social work practices

Olaison, A. (2009)

The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.

Negotiating needs : processing older persons as home care recipients in gerontological social work practices

Olaison, A. (2009)

The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.

Negotiating needs. Processing Older Persons as Home Care Recipients in Gerontological Social Work Practices

Olaison, A. (2009)

The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.

Negotiating needs. Processing Older Persons as Home Care Recipients in Gerontological Social Work Practices.

Olaison, A. (2009)

Studien tar sin utgångspunkt i de bedömningsprocesser äldre personer genomgår för att få tillgång till hjälp i hemmet. Bedömningsprocessen där äldre, deras anhö-riga och kommunala behovsbedömare deltog studerades ur ett kommunikativt perspektiv. Interaktionen vid behovsbedömningssamtalet fungerar som en pro-blemlösningsprocess. Den äldre personens redogörelse för behov förhandlas diskursivt i interaktionen och tre olika berättelselinjer identifierades, baserade på om de sökande betraktar hemtjänsten som ett intrång, som ett komplement och stöd eller som en rättighet. När olika åsikter uttrycks har de äldre sista ordet i enlighet med Socialtjänstlagens föreskrifter. En slutsats är att de anhörigas roll i behovsbedömningsprocessen inte är definierad och att ett familjeperspektiv sak-nas. I studien analyserades också bedömningsprocessens institutionella struktur. De äldre behovssökande processas till att bli klienter, deras behov anpassas till dokumentationens ramverk och kategoriseras i enlighet med institutionella kate-gorier. I transfereringen av tal till text redovisas inte samtliga element i samtalet. Två typer av utredningstext identifierades, den faktaorienterade och den händelse-orienterade. I studien diskuteras det marknadsekonomiska tänkande som kommit att påverka bedömningsprocessen genom byråkratisering vilket står i motsatsställ-ning till det individcentrerade perspektiv som lagen förespråkar. Introduktionen av marknadsmodeller i det gerontologiska sociala arbetet har medfört en inbyggd motsättning och utgör ett välfärdspolitiskt dilemma. Förbättrade kommunikativa metoder behövs för att uppnå en holistisk bedömningsprocess.

Nere för räkning, eller ... : om livet med ett svårt sjukt barn

Jansson Eva (2011)

Den här boken handlar om en familj med ett svårt hjärnskadat barn och två friska småsyskon. Boken beskriver deras nioåriga resa. Vi får följa och lära oss om en liten men viktig grupp barn, känna ilska och sorg men också mycket hopp, glädje och stolthet. Vi följer familjens vardag i motgång och medgång. Kampen för en så bra vård som möjligt och ett innehållsrikt liv för den svårt hjärnskadade dottern. Vi får ta del av syskonens och föräldrarnas känslor och får en inblick i hur det är att leva med assistenter i hemmet under dygnets alla timmar. Boken berör många områden och det märks att författaren har fått möta mycket under åren.
Läs och upplev hur någonting som från början ser mycket mörkt ut blir allt ljusare. En stark och engagerande bok med fokus på möjligheter.

Neuropsychological assessment (4th ed.).

Lezak, M. D. (2004)

Known as "the bible" in its field, this classic text is an essential resource for students learning the field of clinical neuropsychology
This text provides timeless descriptions of all of the major syndromes, and updated information on assessment techniques and treatment
Suitable for use by professionals for clinical care and research, in educational settings for teaching and training, and by neuroscientists in many fields for reference information
Each of the authors has a unique clinical expertise, and all chapters are co-written
The book provides an up-to-date review of the current neuroscience research and clinical neuropsychology practice with many new references.
New to this Edition:

The new edition features structural and functional neuroimages in a color plate section
The new edition inludes newly developed testing batteries for specific issues such as frontal lobe and executive function evaluation

Newborns with impairment: Discourses of Hospital Staff

Vehkakoski, Tanja (2007)

The birth of a baby with an impairment goes against dominant cultural ideals about a happy event. Therefore, the interaction between professionals and parents is particularly important, from the hospital maternity ward to the home. In this article, the author examines both the representations of neonatal impairments constructed by professionals and the consequent subject positions for these babies with impairments. The study is based on interview data collected among 19 staff members of one Finnish county hospital. The author analyzed the data by means of qualitative discourse analysis and concludes that it would be important for health care professionals to provide many-sided elements for parents to consider in the construction of the image of their baby other than traditional tragically and negatively biased cultural interpretations.

Next of kin’s conceptions of the quality of care in psychiatric setting: A phenomenographic study

Schröder, Agneta, Wilde-Larsson, Bodil & Ahlström, Gerd (2007)

The next of kin play a decisive role in the care provided for patients. This and their unique experience of psychiatric care make it important to include them when defining quality of care. The aim of the present study was to describe how next of kin perceive the concept of quality of care in the case of psychiatric care. Twelve next of kin were included in a qualitative interview study and a phenomenographic approach was used for the analysis of the interviews. The next of kin described quality of care mainly from their own perspective but also to a large extent from the patient's perspective as well. Five descriptive categories resulted: dignity, security, participation, recovery, and health-promoting surroundings. Good relations and communication between staff, patients, and next of kin emerged as the central factors regarding the quality of psychiatric care. The next of kin asked for information about psychiatric illnesses and wanted to cooperate in the care. They avoid telling others about their family member's psychiatric illness because of a feeling of shame and guilt. Staff education regarding such feelings and stigmatization could be useful in furthering the understanding of the next of kin's distress and developing interventions to alleviate it. Clinical practice can be improved by guidelines and instruments developed on the basis of this study.

Next-of-kin's conceptions of medical technology in palliative homecare

Munck B, Sandgren A, Fridlund B, Mårtensson J. (2012)

Aims and objectives. Describe next-of-kin's conceptions of medical technology in palliative homecare. Background. Next-of-kin to palliative patients are in an exposed position with increasing responsibility. The more involved they are in the care, the greater caregiver burden they describe. Medical technology has become increasingly common in palliative homecare, and previous research suggests that the devices transform the homes to a hospital ward, thus shifting responsibility from the personnel to the next-of-kin. Design. An explorative descriptive design with a phenomenographic approach was chosen to describe qualitatively different conceptions of the phenomenon medical technology. Method. Interviews with 15 next-of-kin to patients in palliative homecare were analysed in a seven-step process where 10 conceptions emerged in five description categories. Results. Medical technology in palliative homecare required next-of-kin's responsibility in monitoring or providing practical help. It also implied uncertainty among the next-of-kin because of worries about its safety or because of an improper handling. The technology trespassed on daily life because it restricted and affected the private sphere. Medical technology enabled comfort as it implied security and was a prerequisite for the patient to be cared for at home. It also required an adjustment to comprehend and manage the medical technology. Conclusions. Medical technology resulted in an increased caregiver burden and uncertainty among the next-of-kin. Although it meant restrictions and affected their social life, they had great confidence in its possibilities. Relevance to clinical practice. It is important to limit the amount of personnel and materials in the home to avoid trespassing on the family's daily life. Medical personnel also have to be sensitive to what next-of-kin have the strength to do and not use them as informal caregivers.

Nondirective counseling. Effects of short training and individual characteristics of clients [Akademisk avhandling].

Rautalinko E. (2004)

Nondirective counseling is to listen, support, and advise, without directing a client's course of action. It has been influenced by humanistic theories in the tradition of Carl Rogers, but techniques used in nondirective counseling are common in many forms of psychological counseling and treatment today. There are, however, few conclusions as to what the results of training nondirective counseling are. The purpose of the present thesis is to examine effects of nondirective counseling training, and to analyze how such effects are moderated by the characteristics of clients. Three quasi-experimental or experimental studies (Paper I­III) are presented. In Paper I, trained and untrained insurance company employees were compared on their Reflective listening (RL; a subskill of nondirective counseling) skills before and after a training program. Training increased RL, and the skills were transferred to authentic settings. Trained employees were, however, not evaluated differently than untrained. In Paper II, psychology students were compared before and after RL training of three time lengths. All training times increased skills equally, but clients disclosed more information to those with longer training, the students remembered the information better, and external judges perceived the therapeutic relationship as better, especially if the judge was socially competent. In Paper III, two nondirective counseling techniques, RL and open-ended questions, were evaluated by judges who differed in social skills and cognitive ability. RL received positive ratings, whereas open-ended questions did not, and the judges' ratings were moderated by their social skills and cognitive ability. In the Discussion, it is proposed that even short training has effects, that trained skills generalize to authentic contexts, but that the usefulness of the examined subskills of nondirective counseling depends on client characteristics such as social skills and cognitive ability.

Nonverbal narratives: Listening to people with severe intellectual disability

Dennis, R. (2002)

This article describes an exploratory study that examined the perspectives of practitioners who spend much of their working day listening to and in some ways "interpreting" for people with severe intellectual disabilities. On the basis of focus group interviews with 23 professional disability-sector workers, including speech therapists, psychologists, and human service workers, the article reports on the importance of a practitioner's values and experience in successful interactions with individuals who rely on self-developed nonsymbolic communication repertoires. The article includes a discussion of the likelihood of including individuals with severe intellectual disabilities in narrative research.

Normaliseringsprincipen

Nirje, Bengt (2003)

ormaliseringsprincipen handlar om funktionshindrades rätt till livsvillkor och vardagsmönster som ligger så nära de normala som möjligt. Sedan principen formulerades av Bengt Nirje i slutet av 1960-talet har den haft ett stort inflytande på handikappolitiken både i Sverige och i andra länder. Nirje har under årens lopp i artiklar på engelska presenterat och utvecklat principen. I denna bok presenteras dessa artiklar i uppdaterat skick för första gången på svenska och samlade i ett verk.

Principen utgår från att alla individers jämlikhet med den därav följande etiken som grund under livets gång. Särskilt nyskapande blev Nirjes betoning av utvecklingsstördas rätt till självbestämmande.

Principen är tvärvetenskaplig och kan därför studeras av högskolestuderande inom pedagogik, psykologi, socialpsykologi, kulturantropologi, sociologi samt omsorgsvetenskap. Den kan även vara av intresse för yrkesverksamma samt föräldrar till funktionshindrade.

Normaliseringsprincipen sätts i ett inledande kapitel in i sitt historiska sammanhang av Mårten Söder, som i ett avslutande kapitel även diskuterar dess betydelse för handikappolitik och handikappforskning.

Normbrytande beteende i barndomen. Vad säger forskningen?

Andershed A-K, Andershed H. (2005)

Prognosen för barn som tidigt, före tolv års ålder, börjar med brott och annat normbrytande beteende är dyster. Jämfört med dem som debuterar först i tonåren är det normbrytande beteendet hos dessa individer ofta allvarligare och mer aggressivt. De fortsätter dessutom i högre grad med sitt normbrytande beteende som vuxna. Att hantera denna grupp medför omfattande kostnader för samhället och det finns både humana och ekonomiska vinster att göra med ökad kunskap, tidiga förebyggande insatser och behandling.

Ambitionen med denna bok är att göra internationell forskning i ämnet tillgänglig för en bredare publik. Här presenteras bland annat forskning om diagnostisering, förekomst, orsaks- och riskfaktorer, prognos för framtida problem, samt effektiv prevention och behandling av normbrytande beteende bland barn. Boken vänder sig främst till verksamma inom barn- och ungdomspsykiatri, socialtjänst och skola samt till forskare och studenter inom sociala och beteendevetenskapliga högskoleutbildningar, t.ex. socionom- och psykologprogram.

Normbrytande beteende I barndomen. Vad säger forskningen?

Andershed A-K & Andershed H. (2005)

Prognosen för barn som tidigt, före tolv års ålder, börjar med brott och annat normbrytande beteende är dyster. Jämfört med dem som debuterar först i tonåren är det normbrytande beteendet hos dessa individer ofta allvarligare och mer aggressivt. De fortsätter dessutom i högre grad med sitt normbrytande beteende som vuxna. Att hantera denna grupp medför omfattande kostnader för samhället och det finns både humana och ekonomiska vinster att göra med ökad kunskap, tidiga förebyggande insatser och behandling. Ambitionen med denna bok är att göra internationell forskning i ämnet tillgänglig för en bredare publik. Här presenteras bland annat forskning om diagnostisering, förekomst, orsaks- och riskfaktorer, prognos för framtida problem, samt effektiv prevention och behandling av normbrytande beteende bland barn. Boken vänder sig främst till verksamma inom barn- och ungdomspsykiatri, socialtjänst och skola samt till forskare och studenter inom sociala och beteendevetenskapliga högskoleutbildningar, t.ex. socionom- och psykologprogram.

Nurses' encounters with children as next of kin to parents with a cancer diagnosis on oncology wards

Holmberg, Pär, Nilsson, Johanna, Elmqvist, Carina, Lindqvist, Gunilla (2019)

It is a challenge for registered nurses (RNs) to meet children and young people who have a parent diagnosed with cancer. These children often suffer from shock, anxiety, outrage, fear and stress. Recent studies indicate that when next of kin have a professional person to talk to, their wellbeing increases. Moreover, when these children are involved in their parent's care they also begin to trust the nurse caring for their parent. However, there is little known of how nurses respond to a child's needs. Thus, aim of this study was to describe RNs' experiences of encounters with children as next of kin to a parent diagnosed with cancer. A qualitative descriptive study based on semi-structured group interviews, with a latent content analysis was carried out. One theme, 'sense of security' including three categories 'balanced meeting', 'de-dramatize healthcare' and 'learn from one another' was identified. Beyond the categories, there are six sub-categories: 'sense of insecurity', 'caring approach', 'providing information', 'participation', 'processing and follow-up' and 'increased knowledge'. The findings of this study highlight the importance of strengthening the RN's ability to create a caring relationship with children as next of kin.

Livstillfredsställelse hos äldre, särskilt med nedsatt funktionsförmåga samt informella vårdare. I relation till hälsa, självkänsla, sociala och ekonomiska resurser i ett svenskt och europeiskt perspektiv (Akad. Avh.)

Borg, C (2005)

I relation till hälsa, självkänsla, sociala och ekonomiska resurser i ett svenskt och europeiskt perspektiv. Knowledge of factors contributing to life satisfaction among older people is needed, both in the context of those with reduced self-care capacity and among healthy older people and those providing help to others. Such knowledge may be helpful in developing primary and secondary interventions. The overall aim of this thesis was to investigate life satisfaction and its relation to factors such as physical and mental health and social and financial resources among people (60?89 years old) with and without reduced self-care capacity in six European countries, and among informal caregivers (50?89 years old) in Sweden. The aim was further to investigate the extent, need and type of support provided or desired among informal caregivers. This is part of the cross-national European Study of Adults? Wellbeing (ESAW) including six European countries N=12 478 (the Netherlands, Luxemburg, Italy, Austria, UK and Sweden). The Older Americans? Resources Schedule (OARS), Life Satisfaction Index Z (LSIZ) and Rosenberg self-esteem scale were used. Study I comprised 522 people (65?89 years old) with reduced self-care capacity, study II comprised 151 informal caregivers with a high caregiving extent, 392 with a low caregiving extent and 1258 non-caregivers from the Swedish sample. In study III 2195 people with reduced self-care countries. The data were analysed by descriptive and inferential statistics using non-parametric statistics, logistic and linear regression. Low life satisfaction (LSIZ) was related to higher age, being a woman, high degree of reduced self-care capacity, living in special accommodations, feeling lonely and poor financial resources. Feeling lonely, reduced self-care capacity, feeling worried, poor health and poor financial resources in relation to needs predicted low life satisfaction (Paper I). Frequent caregivers with a high extent of caregiving had lower LSIZ than those with less frequent caregiving and noncaregivers, while no differences were found between less frequent caregivers and non-care caregivers in LSIZ. Lower LSIZ was associated with not being employed, low social resources, not refreshed after a night's sleep, poor health, and frequent caregiving (Paper II). In paper III it was found that there were differences as well as similarities in factors predicting LSIZ in that self-esteem and overall health were important in all countries among older people with reduced self-care capacity and reduced self care capacity in three of six countries, whilst in paper IV four factors were found to be common in all ESAW countries. The factors were social resources, financial resources, feeling greatly hindered by health problems and low self-esteem. Factors of importance for life satisfaction thus seem to differ depending on the personal situation and social and political system. These differences should be taken into account when outlining and providing preventive, rehabilitative and support for these groups.

När allt förändrades

Clarén, Anna (2018)

Sammanfattning
De var en lycklig familj med två barn i det vackraste landet Sverige. När det tredje barnet föddes förändrades allt. Det lilla barnet fick sin diagnos och familjen började kämpa med den nya situationen. Långsamt började familjen falla samman. Fotografen Anna Clarén har använt sin kamera som ett verktyg för dokumentation, men också som terapi och tröst. Resultatet är en djupgående och överväldigande berättelse om en familj och om autism som inte lämnar någon oberörd. Boken är en intim och djupt personlig fotografisk dokumentation av en familj i ett skede när livet plötsligt och fullständigt förändras

När andra sover : hur sömnsvårigheter hos barn med funktionshinder påverkar familjens liv

Stenhammar, Ann-Marie m.fl. (2005)

Riksförbundet för rörelsehindrade barn och ungdomar, RBU, drev projektet "Läggdags" och denna bok är ett resultat av projektet. Den beskriver resultaten av en enkätundersökning som besvarades av femhundra familjer. Många av föräldrarna är konstant trötta, men studien visar att föräldrarna kan få tillbaka sin nattsömn om barnen och de själva får bra stöd. I boken berättar föräldrarna vilket stöd de behöver.

När anhörigvårdare begår övergrepp

Erlingsson, C. (2012)

Vad är det som ligger bakom övergrepp mot en äldre familjemedlem som man vårdar? Är det helt och hållet situationsbundet till de yttre omständigheterna eller spelar subjektiva upplevelser och individuella egenskaper hos anhörigvårdaren någon roll? Det skriver Christen Erlingsson, lektor vid Linnéuniversitetet.

Att vara anhörigvårdare kan innebära stor börda, oro och stress. Dessa upplevelser anses vara konsekvenser av situationen runt omkring anhörigvårdaren, den sjuke familjemedlemmens diagnos, och tillgång till eller brist på samhällsresurser och stöd. En fråga är om denna tunga börda och stress kan leda till att övergrepp mot den sjuke begås. Det finns relativt lite forskning kring övergrepp mot äldre om man jämför med forskning inom andra former av familjevåld såsom kvinnofridsbrott och övergrepp mot barn. Vad gäller anhörigvårdandet och övergrepp har forskare endast kvalificerade gissningar att mellan 5–23 procent av anhörigvårdare begår övergrepp mot den de vårdar.

I USA genomfördes för några år sedan en forskningssammanställning med slutsatsen att det inte fanns något entydigt stöd för att konstatera ett samband mellan att vara anhörigvårdare och ökad risk för att övergrepp begås. En anledning till denna slutsats var att det är så få anmälda övergreppsfall jämfört med det stora antalet äldre som vårdas i hemmet av familj eller släktningar. Man kan spegla detta mot att många professionella vårdare, frivilliga och andra berörda personer uppfattar att anhörigvårdandet utan tvekan innebär en ökad risk för övergrepp. De menar att utifrån egna erfarenheter och sunt förnuft förstår man att de påfrestande situationer som skapas i anhörigvårdande situationer, till exempel där den sjuke lider av Alzheimers eller annan demenssjukdom, kan bli så pass provocerande att risken för övergrepp ökar. Till bilden hör att uppemot en femtedel av tillfrågade anhörigvårdare uppger att de fruktar att de en dag kommer att begå övergrepp mot den de vårdar.

En tredje infallsvinkel är att den övervägande majoriteten av anhörigvårdare aldrig begår övergrepp. Det finns anhörigvårdare som upplever positiv hälsa och tillfredsställelse med vårdandet där övergrepp inte förekommer trots påfrestande situationer. Andra anhörigvårdare däremot, som befinner sig i likartade situationer, upplever ohälsa, ökande frustration och som till slut hamnar i situationer där de begår övergrepp mot den sjuke. Man måste fråga sig; vad är det som ligger bakom övergrepp mot en äldre familjemedlem som man vårdar? Är det helt och hållet situationsbundet till de yttre omständigheterna eller spelar subjektiva upplevelser och individuella egenskaper hos anhörigvårdaren någon roll? Ett möjligt svar på dessa frågor upptäcktes överraskande nog under arbetet med en kunskapsöversikt om anhörigvårdares hälsa. Kunskapsöversikten, som togs fram av Nationellt kompetenscentrum Anhöriga, är en sammanställning av svenska forskningsrapporter med syftet att beskriva äldre anhörigvårdares hälsa i samband med att vårda en sjuk familjemedlem.

De allra viktigaste faktorerna som påverkar anhörigvårdarens hälsa, visade sig vara de egna föreställningarna om vårdandet samt upplevelsen av ömsesidighet i de personliga relationerna med den sjuke, andra familjemedlemmar och med stödpersonal. Kunskapsöversiktens resultat visade att ingångsläget för de flesta anhörigvårdare kan beskrivas som att successivt glida in i vårdandet. Under denna fas finns behov av att ständigt justera sitt eget liv. De sociala kontakterna försvinner alltmer och anhörigvårdaren lever ett krympande liv, blir mer och mer isolerad i en föränderlig situation präglad av oro och osäkerhet. Att oroa sig blir en del av vardagen. Anhörigvårdaren bär med sig grundläggande föreställningar om vårdandet, som till exempel "jag behövs", "det är min moraliska plikt att vårda och återgälda den hjälp jag tidigare fått" och "makarna är en enhet och bör stödja varandra". Resultatet visade att det verkar finnas två grupper med anhörigvårdare; en som upplever hälsa och en grupp som upplever ohälsa i form av ökande stress och utmattning.

Bland de anhörigvårdare som upplever hälsa, fanns ömsesidighet i de personliga relationerna och upplevelsen av att vara sedd i sin roll som anhörigvårdare och uppleva mening i vårdandet. Dessa anhörigvårdare bar med sig föreställningar som till exempel, "man får ta det som det kommer", "sjukdom är en del av livet och livet innebär ständig anpassning", "det finns andra än jag som också är anhörigvårdare", "det är viktigt att vara tillsammans med familjen och vänner", och "äkta vänner kommer att vara kvar och acceptera förändringarna". Vad gäller risken för att hamna i övergreppssituationer, är det den andra gruppen anhörigvårdare som är mest i blickfånget, det vill säga de som upplever ohälsa. Här saknas känslan av ömsesidighet i personliga relationer. Anhörigvårdaren kan istället uppleva personalens bemötande som respektlöst och känna sig nonchalerad och förbisedd. Dessa anhörigvårdare bär med sig en mängd föreställningar som till exempel "jag måste ständigt finnas till hands", "min sjuka anhörigas behov kommer i första hand och mina egna behov kommer i andra hand", "jag måste ordna mitt liv kring min anhöriges behov och visa ständig omtänksamhet", "om jag behöver hjälp blir det andra familjemedlemmar eller vänner som kommer att hjälpa mig", " barnen, grannar eller vänner får inte belastas", "barnen måste få leva sina egna liv", "ingen kan ersätta mig", och "ingen kan hjälpa mig i denna situation."

Sådana föreställningar binder fast anhörigvårdaren i en situation som innebär ständigt ökande oro, stress, och börda. Anhörigvårdaren kan till och med känna sig som fången i det egna hemmet men ändå välja att inte anförtro sig åt andra eller själv söka stöd eller hjälp. Anhörigvårdaren sörjer ett förlorat liv, kan känna sig ensam, isolerad, otrygg, oduglig och börja betvivla sin egen kompetens att vårda. Anhörigvårdarens situation präglas också av brist på livsglädje och känslor som skuld och maktlöshet, ökande hopplöshet och konstant ångest. Pressen att själv tillgodose alla den sjukes behov tillsammans med kraven på sig själv att ständigt vara närvarande leder till att anhörigvårdaren aldrig får tillräcklig med sömn och håller på att bli utmattad. Anhörigvårdaren upplever en övermäktig börda och obalans, och är på väg att tappa kontrollen och tippa över i utbrändhet.

Till bilden hör en ökande frustration där anhörigvårdaren har svårt att hålla tillbaka irritation. Nu finns en påtaglig risk att det går över gränsen och kan sluta i övergrepp mot den sjuke familjemedlemmen. Denna ödesdigra nedåtgående spiral kanske känns igen av många. Det är viktigt att erkänna den styrande roll som föreställningarna spelar för upplevelser och hantering av sitt anhörigvårdande. Nästa fråga vi behöver svara på gäller hur stödpersonal i samhället, och vi som står anhörigvårdaren närmast, kan nå fram till de anhörigvårdare som mest behöver hjälp och stöd. Det verkar som att de anhörigvårdare som har störst behov också är de som har minst tro på att hjälp finns. Kunskapsöversiktens resultat pekar på att en bra startpunkt vore att komma underfund med vilka föreställningar som anhörigvårdaren tar med sig in i vårdandesituationen. Oftast är vi inte ens medvetna om våra egna föreställningar eller hur dessa påverkar oss. Ett sätt är att erbjuda anhörigvårdaren och dennes familj att delta i hälsostödjande samtal. En modell för sådana samtal har utvecklats på Linnéuniversitetet i Kalmar som en del av familjefokuserad omvårdnad. Tillsammans med samtalsledare diskuterar familjer sina inneboende styrkor och resurser, föreställningar som antingen kan underlätta eller hindra att hälsan bibehålls, och om att skapa mening i den egna livssituationen.

Ännu viktigare är att samtal utgör ett stöd för att avtäcka hindrande föreställningar och på så sätt förebygga, så att vårdandet inte slutar i övergrepp. Kunskapsöversiktens resultat pekar på ett svar varför en anhörigvårdare kan begå övergrepp mot någon så nära som en familjemedlem. Men länken mellan anhörigvårdandet och övergrepp har än idag ingen fullständig förklaring och fortsatt forskning behövs. Det är extremt viktigt att vi som finns runt omkring känner igen och förstår anhörigvårdarens situation, utan att fördöma men med viljan att bryta anhörigvårdarens isolering, samt kunna erbjuda stöd. Som en mycket klok anhörigstödjare uttryckte det, "Det måste inte vara så märkvärdigt, utan man sätter sig helt enkelt ner och diskuterar tillsammans; varför blev det så här?"

Long-term effects of the Family Bereavement Program on multiple indicators of grief in parentally bereaved children and adolescents

Sandler, I.N., Ma, Y., Tein, J., Ayers, T.S., Wolchik, S., Kennedy, C. & Millsap, R. (2010)

Abstract
OBJECTIVES:
This article reports on results from a randomized experimental trial of the effects of the Family Bereavement Program (FBP) on multiple measures of grief experienced by parentally bereaved children and adolescents over a 6-year period.
METHOD:
Participants were 244 youths (ages 8-16, mean age = 11.4 years) from 156 families that had experienced the death of a parent. The sample consisted of 53% boys and 47% girls; ethnicity was 67% non-Hispanic White and 33% ethnic minority. Families were randomly assigned to the FBP (N = 135) or a literature control condition (N = 109). Two grief measures, the Texas Revised Inventory of Grief and the Intrusive Grief Thoughts Scale (IGTS) were administered at 4 times over 6 years: pretest, posttest, and 11-month and 6-year follow-ups. A 3rd measure, an adaptation of the Inventory of Traumatic Grief (ITG) was administered only at the 6-year follow-up.
RESULTS:
Compared with the control group, the FBP group showed a greater reduction in their level of problematic grief (IGTS) at posttest and 6-year follow-up and in the percentage at clinical levels of problematic grief at the posttest. The FBP also reduced scores on a dimension of the ITG, Social Detachment/Insecurity, at 6-year follow-up for 3 subgroups: those who experienced lower levels of grief at program entry, older youths, and boys.
CONCLUSION:
These are the first findings from a randomized trial with long-term follow-up of the effects of a program to reduce problematic levels of grief of parentally bereaved youths.
(c) 2010 APA, all rights reserved

Long-term effects of the intensification of the transition between inpatient neurological rehabilitation and home care of stroke patients.

Gräsel E, Schmidt R, Biehler J, Schupp W. (2006)

OBJECTIVE:
To investigate an intensified transition concept between neurological inpatient rehabilitation and home care for long-term effects on the care situation two and a half years after stroke patients' discharge.
DESIGN:
Controlled clinical trial allocating patients to intervention group (intensified transition on ward II) or control group (standard transition on ward I); patients were allocated to whichever ward had a vacancy. The last follow-up assessment was carried out on average 31 months after discharge.
INTERVENTION:
The intensified transition concept consisted of therapeutic weekend care, bedside teaching and structured information for relatives during the second phase of the rehabilitation.
SUBJECTS:
Seventy-one patients and their family carers were included, of which one case dropped out. Therefore 70 family carers--35 individuals in each group-- were available for assessment at long-term follow-up.
DATA COLLECTION:
Family carers were asked via telephone whether the patient was still alive and if so, where he or she is living--at home or in a nursing home.
STATISTICAL METHODS:
Binary logistic regression analysis with the care situation (home care versus institutionalized care or deceased) as dependent variable.
RESULTS:
Two and a half years after discharge (T3) in the intervention group significantly fewer patients were institutionalized (2 versus 5) or deceased (4 versus 11) (P = 0.010). Multivariate analysis showed that besides a higher functional life quality at discharge and lower patient's age, the participation in the intensified transition programme is the third significant predictor for home care at T3.
CONCLUSION:
Effects of an intensified transition programme can persist over a long-term period. They can sustain home care by reducing institutionalization and mortality.

Loss of a twin sibling and subsequent risk of psychiatric disorders

Song, Huan, Fang, Fang, Magnusson, Patrik, Almqvist, Catarina (2019)

Background: Given close genetic and emotional connections between a twin pair, the death of a co-twin sibling may considerably affect the mental health of the surviving twin. However, evidence from population-based cohort studies is currently lacking. Methods: Based on the Swedish health registers, we identified 4528 exposed twins whose twin sibling died between 1973 and 2013. For comparison, 22,640 matched unexposed twins (i.e., had twin sibling but didn't experience such a loss) and 4939 full siblings of these exposed twins were included. Controlling for multiple confounders, we used Cox models to estimate hazard ratios (HRs) with 95% confidence intervals (CIs) of clinical ascertained psychiatric disorders after loss of a co-twin. Results: The median age at a co-twin loss was 59 years. Compared to the unexposed twins, exposed twins were at increased risk of psychiatric disorders (HR = 1.65 [95% CI 1.48–1.83]). The association seemed stronger for loss of a monozygotic twin (HR = 2.02 [95% CI 1.56–2.61]) than loss of a dizygotic twin (HR = 1.46 [95% CI1.27–1.67]), and was evident after loss by natural causes (HR = 1.49 [95% CI 1.32–1.69]). Additionally, such risk was most pronounced during the first year after loss and when loss occurred at young age. The HR was 1.55 (95% CI 1.31–1.82) when compared exposed twins to their full siblings who also exposed to loss of a normal full sibling due to the death of the deceased twin. Conclusions: Losing a co-twin is a strong life stressor indicated by the increased subsequent risks of psychiatric disorders among the surviving twins

Loss of parent in childhood and adult psychiatric disorder: the role of lack of adequate parental care

Harris T., Brown G.W., & Bifulco A. (1986)

The inconclusiveness of the literature on the role of loss of parent in influencing psychiatric disorder in adulthood is well known. A number of reasons involving sampling, location and other methodological features, are given to account for these contradictory findings. A study specially designed to cope with these features is then described and basic results are reported. These indicate that, in a sample of women aged 18-65, loss of mother before the age of 17, either by death or by separation of one year or more, was associated with clinical depression in the year of interview. Loss of father by death was in no way associated with current depression, but separation from father showed a trend which, however, did not reach statistical significance. Control for other possible confounding factors did not change this patterning of results; these were further supported when psychiatric episodes earlier in adulthood were examined. Examination of the caregiving arrangements in childhood suggests that it is 'lack of care', defined in terms of neglect rather than simply hostile parental behaviour, which accounts for the raised rate of depression. Such 'lack of care' is more frequent after loss of mother than after loss of father.

Low level of response to alcohol as a predictor of future alcoholism

Schuckit, MA. (1994)

Abstract
OBJECTIVE:
As part of a search for measurable attributes of an individual that might be related to the risk of alcoholism, the author's group previously compared 227 sons of alcoholics and 227 matched comparison subjects at the age of about 20 years. Forty percent of the men at high risk for alcoholism and less than 10% of the comparison subjects demonstrated a low intensity of response to alcohol challenge. This article reports the results of the follow-up of the first half of this study group almost a decade later.
METHOD:
Of the men who had been tested at about age 20, 223 were about age 30 at this evaluation, which included personal and resource-person interviews, record searches, urine toxicology screens, and blood level markers of drinking.
RESULTS:
A low level of response to alcohol at age 20 was associated with a fourfold greater likelihood of future alcoholism in both the sons of alcoholics and the comparison subjects. Fifty-six percent of the sons of alcoholics with the lesser alcohol response developed alcoholism during the subsequent decade, compared to 14% of the men in this group who had highly sensitive alcohol responses. Neither family history of alcoholism nor response to alcohol predicted any other psychiatric diagnoses over the subsequent decade, and neither was a significant predictor of any other substance use disorder.
CONCLUSIONS:
In a heavy-drinking society, a lower sensitivity to modest doses of alcohol is associated with a significant increase in the risk of future alcoholism, perhaps through increasing the chances that a person will drink more heavily and more often.

LSS – Särskilt personligt stöd

SOU (2004)

Det är angeläget att särskilt personligt stöd blir en flexibel insats som kan kompletteras dels efter individuella behov, dels efter förändrade förutsättningar beroende på teknikutveckling och annan kunskaps- och kompetensutveckling. Det är därför inte rimligt att precisera en heltäckande katalog av åtgärder som skall ingå i insatsen. Utifrån dagens erfarenhet av innehållet i råd och stöd kan dock tre delar utgöra bas i särskilt personligt stöd; Kunskapsstöd, psykosocialt stöd och särskilt kompletterande stöd.

Det är viktigt att det inte utvecklas någon skarp gräns mellan dessa delar eftersom det är en styrka om den samlade kompetensen kan samverka på det sätt som bäst motsvarar individens behov. Detta gränsöverskridande arbetssätt kan även i fortsättningen medföra problem i avgränsningen av insatsen, men en efterfrågan på tydliga riktlinjer och detaljstyrning måste vägas mot de enskildas behov av individuellt anpassade åtgärder.

Förtydligandet av insatsen innebär i huvudförslaget att det inom särskilt personligt stöd skall vara möjligt att komplettera kvalitativt eller kvantitativt med åtgärder som kan betraktas ingå i habilitering och rehabilitering om dessa behov inte tillgodoses på annat sätt. Detta gäller alla de fyra delar som normalt anses ingå i habilitering och rehabilitering - medicinska, psykologiska, sociala och pedagogiska.

Lyssna på barnen

Hillevi Wahl (2014)

Alkoholfrågan är något som berör de flesta och många av oss bär på minnen och erfarenheter som vi kanske aldrig fått sätta ord på. Barns erfarenheter och upplevelser av alkohol har vi samlat i vår bok: Lyssna på barnen

Om föräldrar missbrukar, så leder detta ofta till att en väl bevarad familjehemlighet styr hela familjens liv. Genom föreläsningar och reportage berättar människor om sina egna erfarenheter.

Blå Bandet är en del av ett stort internationellt nätverk som i de flesta länder kallas Blå Korset. Våra systerorganisationer i Norge och Danmark, arbetar förutom med förebyggande arbete, också med vård och rehabilitering av missbrukare och deras familjer.

Låt stå! Barn med funktionshinder

Winnberg-Lindqvist, Pia, Holm, Sara & Edlund, Nils H. (1999)

Att kunna stå upprätt är av största betydelse för ett barns utveckling. I boken beskrivs lättbegripligt olika metoder och hjälpmedel för att ett barn med funktionshinder lättare ska kunna stå. Boken vänder sig till föräldrar, lärare, assistenter och andra som finns runt barnet i vardagen. Till boken finns en film med samma titel.

Lära genom upplevelser: ute

Eriksson, Eva, Furå, Pär & Pettersson, Ingegerd (2007)

Författarna till denna bok är specialpedagoger och har arbetat i många år med elever i olika åldrar och utvecklingsfaser. Boken är tänkt som en inspirationskälla för lärande i utomhusmiljö.

Lära tillsammans - samarbetsorienterat lärande för ökad delaktighet

Hammar L. (2013)

De positiva effekter som fysisk aktivitet har på
hälsa och självkänsla är idag allmänt kända. Att
vara delaktig i lek och fysiska aktiviteter har också
en viktig social betydelse för barns och ungdomars
utveckling.
Forskning visar att elever som är delaktiga i
fysiska aktiviteter i högre utsträckning utvecklar
sociala relationer och stärker sitt självförtroende,
vilket även påverkar självkänslan och självbilden
positivt. (Moser och Dudas, 1997)
Denna skrift är framtagen efter att vi i Specialpedagogiska
skolmyndigheten tillsammans med
forskare gjort en studie kring samarbetsorienterat
lärande och vägledande kamrater. Vi vet att många
elever med någon funktionsnedsättning upplever
att de inte alltid får förutsättningar att vara delaktiga
i olika aktiviteter eller i gemenskapen under
skoldagen. Särskilt tydligt har det visat sig i ämnet
idrott och hälsa.
Skolinspektionens ämnesrapport för idrott och
hälsa (2012) lyfter fram att det sällan finns tillgång
till specialpedagogiskt stöd i ämnet. Rapporten
pekar också på att idrottslärare ofta är bra på att
uppmuntra eleven men inte på att anpassa undervisningen
eller aktiviteterna. I rapporten framkommer
även att elever med funktionsnedsättning ofta inte
deltar fullt ut i undervisningen.
Med denna bakgrund ville vi titta närmare på
om man kan påverka delaktigheten mellan elever
med och utan funktionsnedsättning på idrottslektionerna.
Vi var även intresserade av att se om
det påverkade klassklimatet och engagemanget
i aktiviteterna.
Det kommer allt mer forskningsresultat som
visar positiva effekter av elevers kompetens att
samarbeta och hjälpa varandra. I vår och liknande
studier kan vi se att samarbetsorienterat lärande,
tillsammans med pedagogers medvetna förhållningssätt,
kan ge goda möjligheter att påverka
klassklimat och gemenskap. Vi vill därför dela med
oss av våra lärdomar från denna och liknade studier.
I denna skrift ger vi främst exempel från ämnet
idrott och hälsa, men vi ser också att dessa lärdomar
är överförbara på andra ämnen och områden
i skolans verksamhet.
Vi vill även lyfta fram begrepp och synsätt som
vi tror att många skolor kan ha nytta av i sitt arbete
kring att skapa en tillgänglig och inkluderande miljö.
Under hösten 2013 kommer studien att publiceras
som en vetenskaplig artikel i European Journal of
Special Needs Education. Artikeln heter Cooperative
oriented Learning in Inclusive Physical Education.
Författare till artikeln är Aija Klavina, Associate Professor
vid Academy of Sport Education i Lettland,
Kajsa Jerlinder, universitetslektor vid högskolan i
Gävle, Lars Kristén, universitetslektor vid högskolan
i Halmstad, Lena Hammar, rådgivare vid Specialpedagogiska
skolmyndigheten och Tine Soulie,
konsulent vid Handikappidrottens Videncenter
i Danmark.

Lönsamt arbete – familjeansvarets fördelning och konsekvenser

Szebehely, M. (2014)

Den här antologin sammanfattar kunskapsläget och bidrar med ny kunskap om arbetsfördelningen mellan kvinnor och män och de konsekvenser som denna får för deras möjligheter på arbetsmarknaden.

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För femtio år sedan rådde huvudsakligen en mycket strikt arbetsdelning mellan makar. Den rådande normen var att mannen genom förvärvsarbete bar huvudansvaret för den ekonomiska försörjningen av familjen. Om det var ekonomiskt möjligt var hustruns huvudsakliga ansvar att ta hand om hem och barn. I början av sextiotalet var således en majoritet av de gifta kvinnorna hemarbetande och skötte i det närmaste allt hushållsarbete.

Mycket har hänt sedan dess och i dag är det mycket få kvinnor i Sverige som arbetar hemma på heltid. Den normförskjutning som skett har naturligtvis påverkat både män och kvinnor, även om omvälvningen onekligen varit störst för kvinnorna.

I dag utgör de hälften av förvärvsarbetskraften och fördelningen av omsorgs- och hushållsarbetet i familjen är väsentligt mycket jämnare än den var för femtio år sedan. Samtidigt kvarstår betydande könsskillnader exempelvis i arbetstid och lön vilka i sin tur är relaterade till kvarvarande könsskillnader i fördelningen av omsorgs- och hushållsarbete.

Major Depression and Family Life – The family´s way of living with a long-term illness.

Hedman Ahlström, B. (2009)

The overall aim was to explore the family's experiences of major depression and the meaning of the illness for family life, for the ill person, the partner and the children. This thesis has a life-world perspective and is a qualitative explorative study using narrative interviews with families with parents who were identified as having major depression MD (Paper I-IV). A case study with a single family (n=3) was performed with a focus on describing what happens and how to manage the illness in a family (I). Group interviews with 7 families (n=18) were conducted to describe the ways of living with MD in families (II). Further, parents (n=8), who were identified as suffering from major depression, representing 8 families were interviewed to elucidate the meaning of depression in family life from the viewpoint of the ill parent (III). Interviews were also conducted with children and young adults (n=8), aged from 6 to 26 years, representing 6 families to elucidate the meaning of a parent's major depression in family life from the children's perspective (IV). The interview texts were analysed using qualitative methods; thematic content analysis (I-II) and phenomenological hermeneutic analysis (III-IV). The thesis shows that family members had different views and ways of interpreting and managing the family's situation when the mother was suffering from major depression (I).The families faced demanding conditions in the presence of illness which they tried to manage together. The families' situation (fatigue, loss of energy and being burdened with guilt) seemed to bring these families into stressful life situations (II). Depressed parents' suffering and dignity were revealed as being simultaneously present and complicating family life. Dignity has to be repeatedly restored for oneself and the family, and the family's dignity has to be restored in front of other outside the family circle (III). Children's sense of responsibility and loneliness were elucidated. The children's responsibility includes their striving for reciprocity, and in their loneliness is the children's yearning for reciprocity. Children compensate with a sense of responsibility for an ill parent in family life and for their lack of health. Children's family life shifts between responsibility and loneliness as they wait for reciprocity in family life to return to normal (IV). This thesis shows how a study using qualitative methods makes it possible for family members together and individually to talk about major depression as illness that is an intruder in their family life. The thesis elucidates how the depression complicates and involves the family member's life as well as the ill person's family life. All family members have their own life-world and try to balance everyday life from an individual perspective, which overshadows that managing the illness is a concern for the whole family.

Major life areas: Play and education

Adolfsson M, Simeonsson RJ, Lee AM, Ellingsen KM (2012)

Measures for children with developmental disabilities: an ICF-CY approach. Annette Majnemer, ed. Mac Keith Press, 2012. 150.00 [pound sterling]. 552pp. ISBN: 978-1-908316-45-5 I highly recommend this book: Professor Majnemer has brought together a wide range of outcome measurement experts creating a thoughtfully crafted book, essential reading for anyone selecting outcome measures for use with children and youth with developmental disabilities. The book is framed by the components.

Mammor med ADHD – Upplevelser av föräldragupp på barnhälsovårdscentral samt av en anpassad självhjälpsgrupp

Högberg, M., & Slivo, T. (2016)

Syftet med denna kvalitativa studie var att undersöka upplevelser av gruppbaserat föräldrastöd hos mammor med Adhd som deltagit i en universell föräldragrupp på barnhälsovårdscentral (BVC) samt i en anpassad självhjälpsgrupp (Mammagruppen). Mammagruppen bestod av fem mammor med diagnosen Adhd, en hade även Asperger syndrom. Med ett bortfall deltog fyra av dem i studien. Tre av informanterna deltog även i föräldragrupp på BVC. Deras barn var 0-2 år gamla utan uttalade problem. Datainsamling skedde genom semistrukturerade intervjuer och en induktiv tematisk analys resulterade i två huvudteman; Samhörighet och Stöd. Resultatet visar att informanternas upplevelser av Mammagruppen blev övervägande positiva och upplevelser av föräldragruppen på BVC blev övervägande negativa. Några grundläggande faktorer som bidrog till detta var huruvida de har upplevt samhörighet i grupperna samt om de har fått utrymme till att samtala om sina egna behov och känslor. Detta bidrar med unik kunskap och belyser det upplevda behovet av ett anpassat stöd. Det behövs vidare forskning innan vi kan säga att det finns skillnader.

Mammor med intellektuell funktionsnedsättning och deras barn : att se, förstå och bemöta dem utifrån psykologisk teori.

Andersson Kristina (2019)

Huruvida föräldrar med intellektuell funktionsnedsättning (psykisk utvecklingsstörning) klarar av sitt föräldraskap har alltid ifrågasatts. Den här boken vill visa på vikten av relationen mellan föräldrar och barn när man ska ge hjälp och stöd till föräldrar med kognitiva brister. Forskning rörande barn och barns utveckling har länge varit ett viktigt område inom psykologin. Man är dock inte alltid överens om föräldrars betydelse för barns psykiska utveckling. Författarna visar hur psykologiska insatser kan utformas i familjer med komplex problematik inklusive föräldrar med intellektuell funktionsnedsättning. Boken kan utgöra en referensram för att underlätta samarbetet mellan personal inom pedagogisk, social, psykologisk och medicinsk verksamhet. Boken bör med fördel även kunna användas inom utbildningar för behandlingspersonal inom psykolog- och socionomutbildningar

Man måste alltid slåss på byråkraternas planhalva

Paulsson, Karin & Fasth, Åsa (1999)

Riksförbundet för rörelsehindrade barn och ungdomar (RBU) vill med den här rapporten bidra till en bättre förståelse för familjer som har rörelsehindrade barn. Syftet är dels att familjer i liknande situationer skall få en insikt om att de inte är ensamma och dels att påverka politiker, tjänstemän samt vårdpersonal

När livet inte följer manus

Dow, Sophie (2018)

Sammanfattning
Att få ett barn med funktionsnedsättning vänder upp och ned på tillvaron. När Sophie Dow får dottern Annie anar hon direkt att något inte är som det ska men det kommer att ta sexton år innan familjen till slut får ett fullödigt svar på gåtan. Under tiden lever familjen ett utmanande, utmattande men alldeles underbart liv tillsammans. Sophie Dows kamp för sin dotters rättigheter leder till grundandet av Mindroom, en organisation som framgångsrikt jobbar för barn och ungdomar med inlärningssvårigheter. När livet inte följer manus är ett inspirerande, personligt detektivdrama, där Sophie Dow med humor, glöd och oväntat stöd från såväl en Hollywoodregissör som brittiska kungahuset söker svar på frågan: Varför är inte alla hjärnor lika mycket värda?

När mammas tankar ändrade färg

Galli Sara (2015)

Max är fundersam. Det är något som blivit annorlunda med hans mamma. Hon är trött, rösten är ledsen och kojan får vara kvar i vardagsrummet i flera veckor. Pappa säger att mamma är sjuk men Max kan inte se något som är fel. Med en annorlunda mamma vill Max inte att kompisarna ska följa med hem. Vad skulle de säga om de såg att hans mamma sov mitt på dagen? Eller hörde den ledsna rösten? I samtal med skolans sjuksköterska får Max förståelse för att det är mammas tankar som blivit mörka och som gör att hon inte mår bra. När mammas tankar ändrade färg skildrar ur barnets perspektiv hur det kan vara när en förälder är deprimerad. Det är den andra boken av Sara Galli och Mats Molid i deras barnboksserie om barn i svåra livssituationer. Den första boken Får hundar korvar i himlen? tilldelades Statens Kulturråds Litteraturstöd.

När mammor dör: Kvinnor om att mista sin mor

Antologi (2020)

Tillsammans med 30 andra kvinnor, i olika åldrar, har jag skrivit om hur det är att förlora en mamma. En viktig bok som jag är stolt att vara en del av. "När mammor dör växer det sly överallt" skriver Göran Tunström. Men det behöver inte bli ensamt. Det vill vi förmedla. För mig är det även en hyllning till min mamma Kerstin

Närstående i den psykiatriska vården: en kvalitativ studie om erfarenheter av närståendes delaktighet.

Sjöblom, L-M. (2010)

The changes in family burden and participation in care of relatives to both voluntarily and compulsorily admitted patients were investigated as part of a longitudinal study of the quality of the mental health services in a Swedish county performed between 1986 and 1997. The relationship between the relative's mental health and family burden, participation in care and need of own support was also investigated. The results showed similar and high levels of burden and a non-sufficient participation in care in both periods investigated despite the ongoing changes in the delivery of psychiatric services and a change in the compulsory legislation in Sweden during the period. More relatives experienced an own need of care and support from the psychiatric services in the 1997 investigation. Relatives who experienced mental health problems of their own more often experienced other forms of burden, experienced less participation in the patient's treatment and also more often had own needs of care and support. It is concluded that interventions in families where relatives experience mental health problems will be useful, since a well-functioning network around the mentally ill person has shown to reduce relapse.

Närståendes upplevelser på ett vård- och omsorgsboende En kvalitativ intervjustudie

Johanna Eriksson, Annika Strömblad, Magdalena Andersson, Ingela Beck (2018)

Abstrakt Det blir allt fler äldre personer i samhället idag eftersom vi lever längre. Ett större antal äldre personer kan innebära att fler närstående blir involverade i den äldre personens livssituation och vård. Den personcentrerade omvårdnadsmodellen visar att närstående är en viktig resurs för den äldre och för den äldres välbefinnande. Idag ska närstående kunna vara ett naturligt inslag i vården av den äldre personen. Sedan år 2009 när nya bestämmelsen i Socialtjänstlagen kom, har vården ett ansvar att ge närstående stöd och vägledning. Detta leder till att en dialog mellan vårdpersonal och närstående är betydande för att främja den äldres hälsa, men också för att främja närståendes delaktighet och välbefinnande. Syftet med studien var att undersöka närståendes upplevelser av att ha en äldre person vid ett vård- och omsorgsboende. Studien har en kvalitativ studiedesign. Tre fokusgruppsintervjuer och två enskilda intervjuer genomfördes med sammanlagt 26 närstående till en äldre person på ett vård- och omsorgsboende. Intervjuerna analyserades med en konventionell innehållsanalys. Ett gott bemötande och en öppen kommunikation med vårdpersonalen gjorde att de närstående kände sig välkomna och sedda som en viktig del i vården. Närstående upplevde trygghet då de själva och den äldre personen kände sig hemmastadda på vård- och omsorgsboendet. Slutsats: Personalen har en betydelsefull roll för närståendes välbefinnande och delaktighet i vården på ett vård- och omsorgsboende.

Nästan alla dagar grät jag

Kristine Lorentzson (2018)

Vem blir man, när man får veta att ens barn är nära att dö i en livshotande hjärtsjukdom? Vad kan man ta in och vad flyter förbi? Hur går tankarna för den som tvingas bo länge på ett sjukhus? Vad innebär det att leva och hur nära kan Döden stå utan att ta den man älskar?
"Nästan alla dagar grät jag" är berättelsen om en familj där sonen blir akut inlagd på sjukhus för hjärtsvikt. Dag för dag följer vi familjen på sjukhuset, totalt 313 dagar. Berättelsen bygger på en verklig händelse.

Occupational hearing loss, coping and family life

Hallberg, Lillemor (1996)

Too many individuals still unnecessarily develop noise-induced hearing loss (NIHL). Interviews with men with NIHL showed their lack of awareness of noise as a threat to hearing. Also, most men were unwilling to acknowledge, or even denied, their hearing problems. Interviews with spouses of men with NIHL showed that the husband's hearing loss often caused misunderstandings and irritation within the family, which had a negative impact on the couple's intimate relationship. The purposes of our group rehabilitation programme, designed for men with NIHL and their spouses, were to give psychosocial support, adequate information and practice in effective coping strategies. A professional approach to treat men with NIHL is to take a patient-centered global perspective, which encourages the patient to identify, describe and acknowledge problems related to his impaired hearing. In the next step, the patient needs professional help to solve experienced hearing related problems. In this process of identification of and solution to problems, family involvement is important and vital.

Och den ljusnande framtid är vår. – Några ungdomars bild av sin tid vid riksgymnasium

Lang, Lena (2004)

Den tid vi i dagens samhälle betraktar som ungdomstid blir allt längre. De ungdomar som lämnar grundskolan tillhör en åldersgrupp som är större än på länge och det stora flertalet av dem är på väg in i svensk treårig gymnasieutbildning.
En övergripande specialpedagogisk idé handlar om att alla människor bereds möjlighet att ta del i ett samhälle. Samtidigt finns inte någon fullödig bild av vad en sådan idé innefattar, särskilt inte sett utifrån den enskilda människans synvinkel. Forskningsinsatser med specialpedagogisk relevans domineras av individuella perspektiv och perspektiv med intresse för samspel är begränsade. Vidare är intresset för gymnasieskolan som specialpedagogiskt forskningsområde begränsat. Befintlig kunskapsutveckling förankras i högre grad vid omvärldens syn på ungdomar, än i ungdomars syn på omvärlden.

Denna undersökning utgår från några av dem som ofta outsagt åsyftas då "en skola för alla" diskuteras. Undersökningen baseras odelat på ungdomars bild, med en särskild tonvikt lagd vid deras upplevelse av omgivningen inklusive skolan och på samspelet med och inom den.

Official incidents of domestic violence: Types, injury, and associations with nonofficial couple aggression

Capaldi, D. M., Shortt, J. W., Kim, H. K., Wilson, J., Crosby, L., & Tucci, S. (2009)

Official police reports of intimate partner violence (IPV) were examined in a community sample of young, at-risk couples to determine the degree of mutuality and the relation between IPV arrests and aggression toward a partner (self-reported, partner reported, and observed). Arrests were predominantly of the men. Men were more likely to initiate physical contact, use physical force, and inflict injuries than women, although few injuries required medical attention. In the context of nonofficial aggression toward a partner, overall, women had higher levels of physical and psychological aggression compared to men, and levels of severe physical aggression did not differ by gender. Couples with an IPV arrest were more aggressive toward each other than couples with no IPV arrests; however, nonofficial levels of aggression were not higher for men than for women among couples experiencing an IPV incident.

Offspring psychological and biological correlates of parental posttraumatic stress: review of the literature and research agenda

Leen-Feldner, E. W., Feldner, M. T., Knapp, A., Bunaciu, L., Blumenthal, H., & Amstadter, A. B. (2013)

Millions of individuals with posttraumatic stress disorder (PTSD) are parents. A burgeoning literature suggests that offspring of parents with this condition may be at increased risk for psychological problems. The current paper provides an integrative and comprehensive review of the diverse research literature examining the sequelae of parental posttraumatic stress among offspring. Over 100 studies that evaluated psychological and/or biological variables among children of parents with PTSD are reviewed. Findings suggest parental symptoms of posttraumatic stress are uniquely related to an array of offspring outcomes, including internalizing-type problems, general behavioral problems, and altered hypothalamic-pituitary-adrenal axis functioning. Although very little work has directly evaluated mechanisms of transmission, there is increasing support for genetic and epigenetic effects as well as parenting behaviors. These and other mechanisms are discussed; drawing upon findings from other literatures to consider how parental PTSD may impart psychobiological vulnerability upon offspring. We conclude with a detailed discussion of the methodological strengths and challenges of the extant research, along with a recommended agenda for future research in this important area of study.

Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).

Blusi M, Asplund K, Jong M. (2013)

The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.

Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).

Blusi M, Asplund K, Jong M. (2013)

The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.

Older immigrants' use of public home care and residential care

Boll Hansen, E. (2014)

The purpose of this paper is to analyse the extent to which length of residence in the country and country of origin are of importance to older immigrants' use of long-term care services compared to native older people. The analyses were conducted on a population of over 65s living in the Municipality of Copenhagen on 1st Jan 2007. Information was drawn from the administrative registers of the Municipality of Copenhagen on the population's use in 2007 of home care and of residential care in a nursing home. These data were combined by Statistics Denmark with demographic data, socio-economic data and data on the use of health services. It was found that older immigrants are less likely than ethnic Danes to use municipal long-term care services when other predisposing, enabling and need factors are controlled for. The difference is greatest between ethnic Danes and immigrants from non-western countries who have only lived in Denmark for a few years. The difference decreases the longer the immigrant has lived in the country. The findings may be explained, at least in part, by poorer language skills and poorer knowledge of the Danish welfare system among older immigrants and the fact that they are more likely to be cared for by relatives than ethnic Danes are. However, in the course of time language skills improve and knowledge of the system increases and life style with respect to care may approach that of older Danes

Older people - recipients but also providers of informal care: an analysis among community samples in the Republic of Ireland and Northern Ireland

McGee, H. (2008)

Data on both the provision and receipt of informal care among populations of older adults are limited. Patterns of both informal care provided and received by older adults in the Republic of Ireland (RoI) and Northern Ireland (NI) were evaluated. A cross-sectional community-based population survey was conducted. Randomly selected older people (aged 65+, n = 2033, mean age (standard deviation): 74.1 years (6.8), 43% men, 68% response rate) provided information on the provision and receipt of care, its location, and the person(s) who provided the care. Twelve per cent of the sample (251/2033) identified themselves as informal caregivers (8% RoI and 17% NI). Caregivers were more likely to be women, married, have less education and have less functional impairment. Forty-nine per cent (1033/2033, 49% RoI and 48% NI) reported receiving some form of care in the past year. Care recipients were more likely to be older, married, have more functional impairment, and poorer self-rated health. Receiving regular informal care (help at least once a week) from a non-resident relative was the most common form of help received [28% overall (578/2033); 27% RoI and 30% NI]. Five per cent (n = 102/2033) of the sample reported both providing and receiving informal care. Levels of informal care provided by community-dwelling older adults were notably higher than reported in single-item national census questions. The balance of formal and informal health and social care will become increasingly important as populations age. It is essential, therefore, to evaluate factors facilitating or impeding informal care delivery.

Om någon du känner har en depression. En bok för anhöriga, vänner och drabbade

Gustavson, Christina (2019)

Depression är en av våra stora folksjukdomar. Man räknar med att omkring en tredjedel av alla har en depression någon gång under sitt liv. Vem som helst kan drabbas, ung, gammal, frisk eller sjuk. Den som är utvilad efter semestern eller den som är trött och sliten av ett påfrestande arbete. Ofta finner man ingen förklarande orsak, utan depressionen bara kom. Bara en tredjedel av de som drabbas söker hjälp. Symptomen kan vara svåra att känna igen. Här i boken ges en bild av hur en depression kan se ut för andra i den deprimerades omgivning. Om det går att upptäcka symptomen lite fortare, så kan fler söka läkare för diagnos och hjälp. Boken visar också hur man som medmänniska hjälper den som drabbats, hur man kan förebygga depressioner och återfall i nya depressioner, samt hur man kan mildra förloppet. Boken vänder sig både till den som är eller har varit deprimerad och till alla vars anhörig, vän eller arbetskamrat drabbats av en depression.

Manual for the ASEBA Adult Forms and Profiles

Achenbach TM, Rescorla LA (2003)

Manual explains the development, standardization, applications, and profiles for the ASEBA adult forms. Also provides reliability and validity data, problem prevalence rates, scale scores, scoring instruments, and answers to common questions. 232 pages.

Manual for the Child Behavioral Checklist 4-18 and revised 1991 profile.

Achenbach TM (1991)

Purpose
To obtain caregiver report of children's competencies and behavior problems in a standardized format.
Conceptual Organization
The Child Behavior Checklist/4-16 (CBCL/4-16) was the first of what has become a multi-axial
empirically based set of measures for assessing children from parent, teacher, and self-reports. In 1991,
The CBCL/4-16 was re-normed to include children up to 18 years of age (becoming CBCL/4-18), and
eight cross-informant constructs were identified to facilitate direct comparison between problem
behavior scores on the CBCL, the Teacher Report Form (TRF), and the Youth Self-Report Form (YSR)
(Achenbach, 1991). All three instruments include measurement of the following eight constructs or
syndromes: Social Withdrawal, Somatic Complaints, Anxiety/Depression, Social Problems, Thought
Problems, Attention Problems, Delinquent Behavior, and Aggressive Behavior. The CBCL is the only
measure among the three instruments that contains the Sex Problems scale (Achenbach, 1991).
In addition to focusing on a child's behavior as defined by one of the eight syndrome scales, the CBCL,
TRF, and YSR also allow the examination of two broad groupings of syndromes: Internalizing Problems
and Externalizing Problems. Internalizing Problems combines the Social Withdrawal, Somatic
Complaints, and Anxiety/Depression scales, while Externalizing problems combines the Delinquent
Behavior and Aggressive Behavior scales (Achenbach, 1991).
The three corollary instruments also contain items that assess social competence. The CBCL/4-18
contains 20 competence items grouped into 3 scales (Activities, Social, and School) (Achenbach, 1991).
Item Origin/Selection Process
Items were derived from research and consultation with professionals and parents, and revisions were
based on the findings of numerous pilot studies. For a complete description of item derivation for the
CBCL, see the Manual for the Child Behavior Checklist/4-18 and 1991 Profile (hereafter referred to as
the Manual) (Achenbach, 1991).
Materials
Manual, forms, and computerized scoring programs, available from the publisher.
Time Required
Twenty-five to thirty minutes.
Administration Method
The CBCL is designed to be completed independently by the caregiver. It requires fifth grade reading
ability. The form can also be administered orally by an interviewer who records the caregiver's answers.
There are several items for which the respondent is asked to elaborate about an endorsed behavior in
order to avoid improper scoring.
Training
Requires thorough familiarity with the Manual, especially with the cautions related to commonly
misinterpreted items (Manual, p. 13, pp. 249-250). Please see the Manual for additional information on
training and educational requirements.
Scoring
Score Types
Items are coded from 0 to 2. Instructions for hand scoring the instrument are provided in Appendix A
of the Manual.
Total scores may be computed for Social Competence, Behavior Problems, Internalizing Problems,
Externalizing Problems, and Sex Problems, plus scores for each of the 8 syndrome scales (Achenbach,
1991)
Raw scores can be converted to age-standardized scores (T scores having a mean = 50 and SD = 10) that
can be compared with scores obtained from normative samples of children within the same broad age
range. Please see the Manual for more information on CBCL scores.
Score Interpretation
For the syndrome scales, T scores less than 67 are considered in the normal range, T scores ranging from
67-70 are considered to be borderline clinical, and T scores above 70 are in the clinical range
(Achenbach, 1991) Please see the Manual for additional information on specific syndrome scales
For Total Problems, Externalizing Problems, and Internalizing Problems, T scores less than 60 are
considered in the normal range, 60-63 represent borderline scores, and scores greater than 63 are in the
clinical range (Achenbach, 1991).
Norms and/or Comparative Data
The CBCL/4-18 was normed on a sample of 2,368 non-handicapped 4 to 18 year old children. See
Manual for additional information on norms and comparative data. .
Psychometric Support
Reliability
Information on test-retest reliability and Cronbach's alphas are available from the author (Achenbach,
1991).
Validity
Evidence for content, construct, and criterion-related validity is well documented. See Chapter 6 in
Manual for additional details.

Manual for the young adult self-report and young adult behavioral checklist

Achenbach, T.M. (1997)

The YABCL has 107 items that describe specific behavioral and emotional problems. Parents and others rate the young adult for how true each item is now or was within the past six months using the following scale: 0 = not true (as far as you know); 1 = somewhat or sometimes true; 2 = very true or often true. In addition, 13 socially desirable items are rated, and space is also provided for responses to two open-ended items covering physical and other problems, plus anything else the respondent wants to report about the young adult. These questionnaires are designed to provide standardized descriptions of behavior, feelings, thoughts, and competencies rather than diagnoses per se. The YABCL has 109 problem items and 11 competence items that are scored on 3-step scales. Eight syndromes are derived from the items on the YABCL, including 2 designated as Internalizing (Anxious/Depressed, Withdrawn) and 3 designated as Externalizing (Aggressive, Delinquent, and Intrusive Behavior). Reliability on the YABCL averages 0.85 across syndromes and Internalizing, Externalizing, and Total Problems scales (P .001). Validity has been demonstrated by showing significantly higher scores for subjects referred for mental health services than for matched nonreferred subjects.36-38 For the 8 syndrome scales, the 95th percentile is considered the borderline clinical cutoff and the 98th percentile the clinical cutoff on the basis of a nonreferred population. For the problem scales (Internalizing, Externalizing, and Total Problems), the 83rd percentile is considered the borderline clinical cutoff and the 90th percentile the clinical cutoff.33.

Mapping images to objects by young adults with cognitive disabilities.

Carmien, S. & Wohldman E. (2008)

How the type of representation (icons, photos of objects in context, photos of objects in isolation) displayed on a hand-held computer affected recognition performance in young adults with cognitive disabilities was examined. Participants were required to match an object displayed on the computer to one of three pictures projected onto a screen. We tested the opinion widely held by occupational therapists and special education professionals that there is an inverse relationship between cognitive ability and the required fidelity of a representation for a successful match between a representation and an external object. Despite their widespread use in most learning tools developed for persons with cognitive disabilities, our results suggest that icons are poor substitutes for realistic representations.

Marketisation in Nordic eldercare: a research report on legislation, oversight, extent and consequences

Meagher G, Szebehely M, editors (2013)

The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.

Masculine gender roles associated with increased sexual risk and intimate partner violence perpetration among young adult men

Santana, M. C., Raj, A., Decker, M. R., Marche, A. L., & Silverman, J. G. (2006)

This study sought to assess the association between traditional masculine gender role ideologies and sexual risk and intimate partner violence (IPV) perpetration behaviors in young men's heterosexual relationships. Sexually active men age 18–35 years attending an urban community health center in Boston were invited to join a study on men's sexual risk; participants (N=307) completed a brief self-administered survey on sexual risk (unprotected sex, forced unprotected sex, multiple sex partners) and IPV perpetration (physical, sexual and injury from/need for medical services due to IPV) behaviors, as well as demographics. Current analyses included men reporting sex with a main female partner in the past 3 months (n=283). Logistic regression analyses adjusted for demographics were used to assess significant associations between male gender role ideologies and the sexual risk and IPV perpetration behaviors. Participants were predominantly Hispanic (74.9%) and Black (21.9%); 55.5% were not born in the continental U.S.; 65% had been in the relationship for more than 1 year. Men reporting more traditional ideologies were significantly more likely to report unprotected vaginal sex in the past 3 months (ORadj = 2.3, 95% CI = 1.2–4.6) and IPV perpetration in the past year (ORadj = 2.1, 95% CI = 1.2–3.6). Findings indicate that masculine gender role ideologies are linked with young men's unprotected vaginal sex and IPV perpetration in relationships, suggesting that such ideologies may be a useful point of sexual risk reduction and IPV prevention intervention with this population.

Mastering an unpredictable everyday life after stroke'- older women's experiences of caring and living with their partners

Gosman-Hedström, G. and S. Dahlin-Ivanoff (2012)

Scand J Caring Sci; 2012; 26; 587-597 'Mastering an unpredictable everyday life after stroke'- older women's experiences of caring and living with their partners Introduction: The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce. Aim: To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications. Method: The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours. Findings: The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves. Conclusion: This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.

Mastering an unpredictable everyday life after stroke´ - older women´s experiences of caring and living with their partners

Gosman-Hedström, G., & Dahlin-Ivanoff, S. (2012)

INTRODUCTION:
The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.
AIM:
To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.
METHOD:
The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours.
FINDINGS:
The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.
CONCLUSION:
This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.

Maternal Depressive Symptoms when Caring for a Child with Mental Health Problems

Gerkensmeyer J, Perkins S, Day J, Austin J, Scott E, Wu J. (2011)

As primary caregivers of children with mental health problems, mothers face challenges that put them at risk for depression, which is rarely identified or addressed. The aims of this paper were to (a) identify mean differences among demographic, stressor, threat, and resource variables specified in a theoretical model and thought to be associated with maternal depressive symptoms and (b) determine how much variability in depressive symptoms is explained by these variables. High levels and prevalence of depressive symptoms were found within a quality of life study that these data were drawn from. Of 139 mothers participating in this study, 58% had a score of 16 or greater on the CES-D indicating moderate to high levels of depressive symptoms. Significant differences were found between mothers with higher versus lower levels of depressive symptoms for 11 of the 18 variables. Hierarchical regression was used to examine the variance explained in depressive symptoms based upon the conceptual model with 4 composite variables. Income (step 1), behavioral problems (step 2), threat appraisal (step 3), and resource appraisal (step 4) combined explained 42% of the variance.

Maternal parenting behaviors and adolescent depression: The mediating role of rumination

Gaté, M. A., Watkins, E. R., Simmons, J. G., Byrne, M. L., Schwartz, O. S., Whittle, S., et al. (2013)

Substantial evidence suggests that rumination is an important vulnerability factor for adolescent depression. Despite this, few studies have examined environmental risk factors that might lead to rumination and, subsequently, depression in adolescence. This study examined the hypothesis that an adverse family environment is a risk factor for rumination, such that the tendency to ruminate mediates the longitudinal association between a negative family environment and adolescent depressive symptoms. It also investigated adolescent gender as a moderator of the relationship between family environment and adolescent rumination. Participants were 163 mother–adolescent dyads. Adolescents provided self-reports of depressive symptoms and rumination across three waves of data collection (approximately at ages 12, 15, and 17 years). Family environment was measured via observational assessment of the frequency of positive and aggressive parenting behaviors during laboratory-based interactions completed by mother-adolescent dyads, collected during the first wave. A bootstrap analysis revealed a significant indirect effect of low levels of positive maternal behavior on adolescent depressive symptoms via adolescent rumination, suggesting that rumination might mediate the relationship between low levels of positive maternal behavior and depressive symptoms for girls. This study highlights the importance of positive parenting behaviors as a possible protective factor against the development of adolescent rumination and, subsequently, depressive symptoms. One effective preventive approach to improving adolescent mental health may be providing parents with psychoeducation concerning the importance of pleasant and affirming interactions with their children. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

Maternal report on child outcome after a community-based program following intimate partner violence

Grip, K., Almqvist, K., & Broberg, A. G. (2012)

Abstract
BACKGROUND:
This study examined the perceived effectiveness of a 15-week community-based program for 46 children exposed to intimate partner violence (IPV) and their mothers.
AIMS:
The primary aims were to describe the children who entered one of the existing community-based programs in terms of behavioral problems and to evaluate the impact of the program on children's general behavioral functioning as assessed by their mothers.
RESULTS:
Children's rated behavioral problems (SDQ) dropped following treatment; the effect size was in the medium range. The social impairment caused by the problems decreased as well. The effect regarding behavioral problems was not related to the degree of exposure to IPV or the mothers own changes in trauma symptoms following treatment. Results were analyzed as well at the individual level with the Reliable Change Index (RCI), which showed that the majority of children were unchanged following treatment.
CONCLUSIONS:
One implication from the study is the need for baseline screening and assessment. About half of the current sample had a clinical symptom picture indicating the need for specialized psychiatric/psychotherapeutic treatment. Furthermore, the reduction in behavioral problems was significant but many children still had high levels of behavioral problems after treatment, indicating a need of a more intense or a different type of intervention.

Maternal Unresolved Attachment Status Impedes the Effectiveness of Interventions With Adolescent Mothers

MORAN, G., PEDERSON, D. R. & KRUPKA, A. (2005)

Children of adolescent mothers are at risk for a variety of developmental difficulties. In the present study, the effectiveness of a brief intervention program designed to support adolescent mothers' sensitivity to their infants' attachment signals was evaluated. Participants were adolescent mothers and their infants who were observed at 6, 12, and 24 months of age. The intervention conducted by clinically trained home visitors consisted of eight home visits between 6 and 12 months in which mothers were provided feedback during the replay of videotaped play interactions. At 12 months, 57% of the mother–infant dyads in the intervention group and 38% of the comparison group dyads were classified as secure in the Strange Situation. Seventy-six percent of the mothers in the intervention group maintained sensitivity from 6 to 24 months compared with 54% of the comparison mothers. Further analyses indicated that the intervention was effective primarily for mothers who were not classified as Unresolved on the Adult Attachment Interview.

Measurement of time processing ability and daily time management in children with disabilities

Janeslätt G, Granlund M. (2009)

Background

Improvement is needed in methods for planning and evaluating interventions designed to facilitate daily time management for children with intellectual disability, Asperger syndrome, or other developmental disorders.

Objectives

The aim of this study was to empirically investigate the hypothesized relation between children's time processing ability (TPA), daily time management, and self-rated autonomy. Such a relationship between daily time management and TPA may support the idea that TPA is important for daily time management and that children with difficulties in TPA might benefit from intervention aimed at improving daily time management.

Methods

Participants were children aged 6 to 11 years with dysfunctions such as attention-deficit/hyperactivity disorder, autism, or physical or intellectual disabilities (N = 118). TPA was measured with the instrument KaTid. All data were transformed to interval measures using applications of Rasch models and then further analysed with correlation and regression analysis.

Results

The results demonstrate a moderate significant relation between the parents' ratings of daily time management and TPA of the children, and between the self-rating of autonomy and TPA. There was also a significant relation between self-ratings of autonomy and the parents' rating of the children's daily time management. Parents' ratings of their children's daily time management explain 25% of the variation in TPA, age of the children explains 22%, while the child's self-rating of autonomy can explain 9% of the variation in TPA. The three variables together explain 38% of the variation in TPA. The results indicate the viability of the instrument for assessing TPA also in children with disabilities and that the ability measured by KaTid is relevant for daily time management.

Conclusions

TPA seems to be a factor for children's daily time management that needs to be taken into consideration when planning and evaluating interventions designed to facilitate everyday functioning for children with cognitive impairments. The findings add to the increasing knowledge base about children with time processing difficulties and contribute to better methods aimed at improving these children's daily time management. Further research is needed to examine if there are differences in TPA related to specific diagnosis or other child characteristics.

Measures used to assess burden among caregivers of stroke patients: a review

Visser-Meily JM, Post MW, Riphagen, II, Lindeman E. (2004)

Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties.
Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness.
Results: The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures.
Conclusions: No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness.

Measuring children's participation in recreation and leisure activities: construct validation of the CAPE and PAC

King G, Law M, King S, Hurley P, Hanna S, Kertoy M, et al. (2007)

There is a need for psychometrically sound measures of children's participation in recreation and leisure activities, for both clinical and research purposes. This paper provides information about the construct validity of the Children's Assessment of Participation and Enjoyment (CAPE) and its companion measure, Preferences for Activities of Children (PAC). These measures are appropriate for children and youth with and without disabilities between the ages of 6 and 21 years. They provide information about six dimensions of participation (i.e. diversity, intensity, where, with whom, enjoyment and preference) and two categories of recreation and leisure activities: (i) formal and informal activities; and (ii) five types of activities (recreational, active physical, social, skill-based and self-improvement). This paper presents information about the performance of the CAPE and PAC activity type scores using data from a study involving 427 children with physical disabilities between the ages of 6 and 15 years. Intensity, enjoyment and preference scores were significantly correlated with environmental, family and child variables, in expected ways. Predictions also were supported with respect to differences in mean scores for boys vs. girls, and children in various age groups. The information substantiates the construct validity of the measures. The clinical and research utility of the measures are discussed.

Measuring next of kin's experience of participation in the care of older people in nursing homes

Westergren, Albert, Behm, Lina, Lindhardt, Tove, Persson, Magnus, Ahlström, Gerd (2020)

Lack of conceptual clarity and measurement methods have led to underdeveloped efforts to measure experience of participation in care by next of kin to older people in nursing homes. OBJECTIVE: We sought to assess the measurement properties of items aimed at operationalizing participation in care by next of kin, applied in nursing homes. METHODS: A total of 37 items operationalizing participation were administered via a questionnaire to 364 next of kin of older people in nursing homes. Measurement properties were tested with factor analysis and Rasch model analysis. RESULTS: The response rate to the questionnaire was 81% (n = 260). Missing responses per item varied between <0.5% and 10%. The 37 items were found to be two-dimensional, and 19 were deleted based on conceptual reasoning and Rasch model analysis. One dimension measured communication and trust (nine items, reliability 0.87) while the other measured collaboration in care (nine items, reliability 0.91). Items successfully operationalized a quantitative continuum from lower to higher degrees of participation, and were found to generally fit well with the Rasch model requirements, without disordered thresholds or differential item functioning. Total scores could be calculated based on the bifactor subscale structure (reliability 0.92). Older people (≥ 65 years) reported a higher degree of communication and trust and bifactor total scores than younger people (p < 0.05 in both cases). People with a specific contact person experienced a higher degree of participation in the two subscales and the bifactor total score (p < 0.05 in all three instances). CONCLUSION: Psychometric properties revealed satisfactory support for use, in nursing home settings, of the self-reported Next of Kin Participation in Care questionnaire, with a bifactor structure. Additional research is needed to evaluate the effectiveness of the scales' abilities to identify changes after intervention.

Measuring participation of children with disabilities: Issues and challenges.

Coster WJ, Khetani AM. (2007)

PURPOSE:
The aim of this paper is to examine conceptual issues that challenge development of valid and useful measures of children's participation.
METHOD:
Ambiguities in the current definition of participation in the International Classification of Functioning, Disability and Health (ICF) are examined along with their implications for developing valid measures for children and youth.
RESULTS:
Developers of new measures must address three key issues that will affect the ultimate meaning of participation data obtained from these instruments: uncertain criteria to distinguish activity from participation; lack of consensus on whether measures should address objective or subjective aspects of participation or both; and appropriate choice of respondent when children are the focus. Variations in how the participation construct is operationalized challenge one's ability to develop a coherent body of knowledge about children's participation and the factors that influence it.
CONCLUSION:
Given current variations in how participation is being defined, both developers and users of measures of participation need to be explicit about the definition of participation that a particular measure represents and the inferences that can be drawn from the scores.

Measuring responsive style in parents who use AAC with their children: Development and evaluation of a new instrument.

Broberg, M., Ferm, U., & Thunberg, G. (2012)

The aim of this study was to develop and evaluate an instrument - the Responsive Augmentative and Alternative Communication Style (RAACS) scale Version 2 - to assess the communicative style of parents as they interact with their children using augmentative and alternative communication (AAC). This scale was used to analyze play interactions between 43 parents and 28 children with different diagnoses (including Down syndrome, autism, cerebral palsy, and intellectual disability), aged between 12 and 60 months. Parent-child interactions were observed both before and after parent participation in ComAlong, a training course on using responsive communication and AAC to support interaction with children. Based on an analysis of the results, Version 3 of the RAACS scale was developed and is recommended for future use. Analyses of Version 3 showed acceptable inter- and intra-coder reliability, and excellent internal consistency.

Measuring risk and protective factors for substance use, delinquency, and other adolescent problem behaviors: The Communities That Care Youth Survey

Arthur MW, Hawkins JD, Pollard JA, Catalano RF, Baglioni AJ, Jr. (2002)

Risk and protective factors predictive of adolescent problem behaviors such as substance abuse and delinquency are promising targets for preventive intervention. Community planners should assess and target risk and protective factors when designing prevention programs. This study describes the development, reliability, and validity of a self-report survey instrument for adolescents ages 11 to 18 that measures an array of risk and protective factors across multiple ecological domains as well as adolescent problem behaviors. The instrument can be used to assess the epidemiology of risk and protection in youth populations and to prioritize specific risk and protective factors in specific populations as targets for preventive intervention.

Measuring risk and protective factors for substance use, delinquency, and other adolescent problem behaviors: The Communities That Care Youth Survey

Arthur MW, Hawkins JD, Pollard JA, Catalano RF, Baglioni AJ, Jr. (2002)

Risk and protective factors predictive of adolescent problem behaviors such as substance abuse and delinquency are promising targets for preventive intervention. Community planners should assess and target risk and protective factors when designing prevention programs. This study describes the development, reliability, and validity of a self-report survey instrument for adolescents ages 11 to 18 that measures an array of risk and protective factors across multiple ecological domains as well as adolescent problem behaviors. The instrument can be used to assess the epidemiology of risk and protection in youth populations and to prioritize specific risk and protective factors in specific populations as targets for preventive intervention.

Med anhörigglasögon på : så gjorde vi i Göteborg

Nilsson, I. B., Hellberg, I., & Martall, C. (2010)

Med anhörigglasögon på – så gjorde vi i Göteborg sammanfattar utvärderingen av en samverkansmodell för bättre anhörigstöd.

Kunskapsstödet är en kortversion av Med anhörigglasögon på – utvärdering av en samverkansmodell. Samverkansmodellen rör ett lokalt utvecklingsarbete med och för anhöriga kopplad till teknik och hjälpmedel.

Med målet i sikte - Målinriktad och systematisk utvärdering av insatser för enskilda personer (MOS)

Socialstyrelsen (2012)

Bland professionella som är verksamma i hälso- och sjukvård och socialtjänsten finns i dag ett stort intresse för att följa upp och utvärdera den egna praktiken. Man vill veta om insatserna ger det förväntade resultatet, om klientens problem minskar eller om klientens välbefinnande ökar. Men hur går man till väga för att få relevant och tillförlitlig kunskap om klienternas förbättring och insatsens betydelse?

I denna bok presenteras MOS – målinriktad och systematisk utvärdering av insatser för enskilda personer. MOS är ett sätt att följa upp och utvärdera den egna praktiken och ett verktyg som hjälper professionella och klienter att hålla fokus på det förbättringsmål som klienten vill uppnå i varje led av processen. MOS bygger på Single system designs (SSD) en utvärderingsmetod som länge använts i USA, där den utvecklades redan under 1970-talet. I engelskspråkig litteratur används även andra namn, t.ex. Single subject designs [10] eller Single case experimental designs [1]

I Sverige har detta sätt att utvärdera prövats och använts inom bl.a. rehabilitering och habilitering [5]. Inom socialtjänsten har den endast använts i mindre omfattning. På svenska finns endast några kortare beskrivningar [5,6,11]. En handledning som visar hur metoden ska användas saknas. Därför har denna bok skrivits.

Medication compliance in older individuals with depression: gaining the views of family carers

Boyle, E., & Chambers, M. (2000)

Documented evidence indicates that medication non-compliance for the older person is a common and poorly understood problem. This paper reports on a pilot study, which used a focus group interview to explore carers' attitudes, experiences and perceptions regarding medication compliance for their older depressed relative. It aimed to understand the problems and challenges encountered by carers in respect of their relative being non-compliant, and provide material to develop a comprehensive educational and support package to promote antidepressant compliance. A convenience sample of seven carers participated in the focus group and a qualitative analysis of the interview identified a number of key issues. Carers had little knowledge of depression, they were not well informed regarding antidepressant medication and they took an active role to ensure compliance. The focus group highlighted the need for health care professionals to promote and encourage carers to be part of the older individuals treatment programme and provide concise and unambiguous educational information in relation to antidepressants and the importance of compliance.

Medicinsk omvårdnad vid svåra flerfunktionshinder : handbok

Ölund, Ann-Kristin (2012)

Att leva med stora funktionsnedsättningar innebär att vara beroende av god medicinsk omvårdnad. Den här handboken ger kunskap om varför funktionshindren uppstår, hur det påverkar kroppen och hur den praktiska omvårdnaden i vardagen kan utföras på bästa sätt

Medicinsk omvårdnad vid svåra flerfunktionshinder. Handbok.

Ölund A-K. (2012)

Det här är en handbok som beskriver den medicinska omvårdnaden om personer med svåra flerfunktionshinder. Den tar upp symtom på olika problem, vilka behandlingsalternativ som finns och hur den praktiska omvårdnaden går till.

Boken riktar sig till alla som möter personer med flerfunktionshinder - anhöriga, assistenter, vårdpersonal - men också till habiliteringens personal. Den förmedlar fakta och kunskap på ett sätt som både går på djupet och är lättillgängligt.

Boken är tydligt uppdelad på olika kapitel som sömn, smärta och epilepsi, och kan därför även användas som uppslagsbok. Längst bak finns en omfattande lista med referenser och tips på vidare läsning.

Författare är Ann-Kristin Ölund, habiliteringsläkare och barnneruolog. Hon har över 20 års erfarenhet av praktiskt arbete med barn med flerfunktionshinder vid habiliteringarna i Uppsala och i Norrbotten. Boken är skriven med värme och en önskan om att personer med flerfunktionshinder ska kunna utvecklas efter sina unika förutsättningar.

Röster från läsare
"Denna bok fungerar utmärkt som uppslagsbok då den är indelad i tydliga kapitel utifrån möjliga problemområden, t.ex. spasticitet, smärta och epilepsi. Den är skriven på ett enkelt och lättförståeligt sätt med flera förklarande bilder samt tips- och faktarutor. Detta gör att den lämpar sig väl för närstående så väl som vårdpersonal. Ann-Kristin Ölunds mångåriga erfarenhet som läkare med praktiskt arbete med habilitering av personer med flerfunktionshinder gör att bokens innehåll känns kärnfullt och relevant."

Meeting the needs of parentally bereaved children: a framework for child-centered parenting

Saldinger, A., Porterfield, K., & Cain, A.C. (2004)

Abstract
This article describes the development and deployment of a framework for measuring parenting capacities in the context of bereavement. Grounded theoretical analysis of interviews with a community sample of 41 bereaved spouses with school-aged children elicited a set of nine bereavement-specific parenting tasks. A corollary coding system (covering all nine parenting tasks) was created to transform interview materials into quantitative data, thus permitting systematic empirical investigation of the parenting capacities of bereaved spouses. Parenting behaviors were coded on a 5-point scale ranging from least child-centered to most child-centered. Sex of surviving parent and circumstances of death proved to be significant mediating variables: mothers were more child-centered than fathers, and parents surviving sudden deaths more child-centered than those surviving anticipated deaths. Lengthy illness was associated with less child-centered parenting. The more child-centered the parenting, the less symptomatic the child as measured by parent report (Child Behavior Checklist) and child self-report (Children's Depression Inventory, Revised Child Manifest Anxiety Scale). Child-centered parenting was associated with more positive and fewer negative perceptions of the surviving parent by the child as measured by the Parent Perception Inventory. Implications of findings are discussed.

Men and older persons also care, but how much? Assessing amounts of caregiving in Spain and Sweden

Sundström Gerdt, Jegermalm Magnus, Abellán Antonio, Ayala Alba (2018)

Abstract [en]

We estimate how much caregiving men and women respectively do, and how much of the caregiving is done by older (65+) and younger persons, inside their household and for other households, in Spain and in Sweden. To assess this, we use self-reported hours of caregiving from two national surveys about caregiving, performed in 2014 (Spain, N = 2003; Sweden, N = 1193). Spain and Sweden have dissimilar household structures, and different social services for older (65+) persons. Caregivers, on average, provide many more hours of care in Spain than in Sweden. Women provide about 58% of all hours of caregiving, in Spain in all age groups, in Sweden only among younger caregivers. The reason is the dominance of partner caregivers among older Swedes, with older men and women providing equal hours of care. Family caregiving inside the household is more extensive in the more complex Spanish households than in Swedish households. Family care between households prevails in Sweden, where the large majority of older persons live with a partner only, or alone. This is increasingly common in Spain, although it remains at a lower level. We estimate that older persons provide between 22% and 33% of all hours of caregiving in Spain, and between 41% and 49% in Sweden. Patterns of caregiving appear to be determined mainly by demography and household structure.

Omsorg människor emellan. En översikt av omsorgsgivande i den svenska befolkningen. (förf. Malmberg B. & Sundström G.).

Socialstyrelsen (2006)

Omsorg som ges av anhöriga och närstående är omfattande i alla åldrar och regioner i Sverige, men allra mest bland personer i gruppen 45-64 år, då denna omfattar tre av tio personer. Det finns tecken på att omsorg ökar generellt, men omfattningen beror delvis på hur frågorna ställs: från cirka 10 till väl över 20 procent av befolkningen ger omsorg, beroende på hur man definierar vård och omsorg. Omkring 7 procent ger mer omfattande och in¬tensiv omsorg, med dagliga insatser och med inslag av personlig omvårdnad.

Den exakta nivån för omsorgen är svår att fastställa, men den är i varje fall hög och väl i nivå med den informella omsorgen i andra länder. Intensiteten - tidsinsatsen - är dock möjligen mindre än i t.ex. Spanien. En viktig skillnad är också att nordisk omsorg mest sker mellan hushåll, den kontinentalsydeuropeiska mer inom hushållen.

En stor men ingalunda total del av omsorgen riktar sig till äldre personer. Intressant är att även äldre ofta är omsorgsgivare, för partner och andra. Omsorgsgivandet förefaller vara något mer jämställt i Sverige än på kontinenten, dvs. svenska män är omsorgsgivare nästan lika ofta som kvinnor, om än inte lika intensivt, och partneromsorg är ganska jämställd i Sverige. Anhörigomsorg tycks i Sverige vara klasslös, dvs. ungefär lika vanlig i alla samhällsskikt.

Arbete och omsorg låter sig ofta förenas, både för män och för kvinnor. Orsaken är troligen att omsorgsgivande är vanligast i åldrar då många av andra skäl "trappat ned" förvärvsarbetet och att omsorgen mer sällan är omfattande, daglig och "tung" - för de flesta.

Konsekvenser för arbetslivet får omsorgen ibland, men i stort sett endast när det handlar om omsorg för partner, föräldrar eller vuxna barn. Totalt är cirka var femte yrkesverksam också omsorgsgivare. Dessa tycks inte generellt ha sämre hälsa än de som inte har ett sådant åtagande. Om något gäller det motsatta, dvs. att omsorgsgivare har bättre hälsa än de som inte är omsorgsgivare. I en mindre grupp som vårdar partner eller annan nära anhörig kan dock hälsoproblem förekomma.

Anhörigomsorg i Sverige och offentlig omsorg, främst hemtjänst, överlappar ofta varandra. Detta gäller särskilt hjälp till ensamboende äldre, en stor mottagargrupp. Många anhöriga klarar på egen hand sitt åtagande, men åtskilliga uttrycker också behov av offentligt stöd. Sådant stöd måste troligen ta sig olika former å ena sidan för dem som hjälper någon de bor tillsammans med och å andra sidan för dem - majoriteten - som hjälper någon i ett annat hushåll. Där är sannolikt en utbyggd och välfungerande hemtjänst och annan öppen omsorg ofta en lämplig stödform.

Mer än en miljon svenskar är i dag omsorgsgivare för närstående. En del av den ökning man iakttagit beror troligen på ökande behov, men avspeglar nog också allmänt växande sociala nätverk: fler anhöriga betyder mer omsorgsgivande. Till en del kan ökande anhörigomsorg nog också härledas till att den offentliga omsorgen krympt i relation till hjälpbehoven i befolkningen.

Omsorg som arbete : om utbildning, arbetsmiljö och relationer i äldre- och handikappomsorgen

Ahnlund, P (2008)

Background: At the central administrative level in Sweden, care work is presented as a complex task for which personnel require special qualifications. In elderly care, questions of training and qualifications form the highly topical theme noticed by central actors. According to The National Board of Health and Welfare, the supply of manpower and the educational levels of the workers are the most important factors in ensuring high quality care for the elderly. The question of educational levels is, however, with the exception of personal assistants, not given as much attention in care for people with disabilities.Aim: The aim of this dissertation is firstly to compare elderly care and care for persons with disabilities with the focus to describe and analyse education and work environment in these sectors. Secondly, the aim is to analyse if, and if so how, questions of education interacts with personnel's view of the social work environment.Methods: The thesis is comprised of four studies and paper 1, 2 and 3 are based on the results of a qualitative interview study, which was comprised of 48 persons who worked in elderly care and the care for persons with disabilities. Of the 48 persons who took part in the study, 11 of them worked as middle managers and 37 worked as care workers in the every day care. Paper 4 consists of a research summary on how education for care workers is being studied in a Swedish and an international context.The personnel who participated in the interview study work in different care settings; in elderly care the personnel work in both sheltered housing and public home care services. In the care for disabled persons, the personnel work in residential housing with special services, in public daily activities for people with intellectual disabilities and as personal assistants.Result: Both managers and personnel find it important for care workers to have a degree of educational background as a basis for the learning process at the work place. The results also show that educational levels and the work environment are themes that are discussed differently by different actors. In previous research on education for care workers in both elderly care and the care for People with disabilities, academic education or education at a ground level has been seen as problematic due to the distance it is said to create between the worker and the care recipient. My results show that the discussion about education for care workers has become rather biased, and that highly educated personnel tend to be more aware of the power they possesses and that the relation to the care receiver is important. In elderly care the issue of education seems to be more a question of a general educational level. In the care for people with disabilities, the question of education for personnel is on a more individual basis, where the care workers learn together with the care recipient. Educational levels, the work environment and relations with colleagues and care recipients are connected and support from the managers is important for understanding the work and the relational perspective.

Omsorgens pris i åtstramningstid A nhörigomsorg för äldre ur ett könsperspektiv

Petra Ulmanen (2015)

Avhandling

För många är det en självklarhet att ge anhörigomsorg, det vill säga hjälpa en anhörig som har en funktionsnedsättning eller långvarig sjukdom och inte kan klara sig på egen hand. Det kan upplevas som meningsfullt, utvecklande och tillfredsställande, samtidigt som det innebär extraarbete och oro för den som behöver omsorgen. Denna avhandling handlar om anhörigomsorg för äldre personer i Sverige, främst de medelålders döttrarnas och sönernas hjälp till sina gamla föräldrar. Vad betyder det för äldres anhöriga att äldreomsorgen har minskat ända sedan 1980 och att var fjärde plats i äldreboende har försvunnit under 2000-talets första decennium? Har anhörigomsorgen ökat och hur påverkas omsorgsgivarnas liv, framförallt deras arbetsliv?

Omsorgens pris i åtstramningstid. Anhörigomsorg för äldre ur ett könsperspektiv. Rapport i socialt arbete nr. 150

Ulmanen, P. (2015)

För många är det en självklarhet att ge anhörigomsorg, det vill säga hjälpa en anhörig som har en funktionsnedsättning eller långvarig sjukdom och inte kan klara sig på egen hand. Det kan upplevas som meningsfullt, utvecklande och tillfredsställande, samtidigt som det innebär extraarbete och oro för den som behöver omsorgen. Denna avhandling handlar om anhörigomsorg för äldre personer i Sverige, främst de medelålders döttrarnas och sönernas hjälp till sina gamla föräldrar. Vad betyder det för äldres anhöriga att äldreomsorgen har minskat ända sedan 1980 och att var fjärde plats i äldreboende har försvunnit under 2000-talets första decennium? Har anhörigomsorgen ökat och hur påverkas omsorgsgivarnas liv, framförallt deras arbetsliv? Hur vanligt är det med psykiska påfrestningar, svårigheter att fokusera på arbetet eller att gå ner i arbetstid till följd av omsorgsgivandet? Hur har äldreomsorgspolitiken sett på anhöriga till äldre personer och deras roll i omsorgen om äldre från 1950-talet fram till idag? Har äldreomsorg setts som ett sätt att tillgodose inte enbart äldres omsorgsbehov, utan även anhörigas behov av att förvärvsarbeta?

Petra Ulmanen söker svar på dessa frågor genom analyser av såväl surveyundersökningar som regeringens propositioner om äldreomsorg.

Ulmanen, P. (2015). Omsorgens pris i åstramningstid. Anhörigomsorg för äldre ur ett könsperspektiv. Diss. Stockholm: Stockhoms universitet, institutionen för socialt arbete. (Rapport i socialt arbete nr. 150)

Omsorgstjänster för äldre och funktionshindrade: skilda villkor, skilda trender?

Szebehely M, Trydegård GB. (2007)

Välfärdsstatens insatser för personer med funktionshinder och för äldre människor särskiljs sällan i statistik och forskning. När, som i denna artikel, verksamheterna separeras, blir det tydligt att de båda välfärdstjänsterna under senare år har utvecklats åt skilda håll. Ekonomiska resurser, tjänsternas omfattning och personalens arbetsvillkor skiljer sig påtagligt mellan äldre- och handikappomsorgen, och gränsen mellan statens, familjens och marknadens roller har förskjutits på olika sätt.

Omvårdnad i barnsjukvården

Tveiten, S. (2000)

Vilka specifika faktorer har betydelse i omvårdnad av barn? Vilka utvecklingspsykologiska faktorer behöver sjuksköterskan ha kunskap om? Hur reagerar barn vid inläggning på sjukhus? Hur ska sjuksköterskan samarbeta med det sjuka barnets föräldrar och syskon? God omvårdnad av barn kräver speciell kompetens.

On Chronic Illness and Quality of Life: A Conceptual Framework

Nordenfelt, Lennart (1995)

In this paper I focus on the topic of chronic illness in the context of quality of life. I offer a conceptual explanation of these notions and then try to systematise the various species of suffering connected with chronic illness. Suffering in illness rarely attracts systematic analysis. Part of the reason for this is that the topic is in a way an aspect of common sense. It has an air of self-evidence and seems not to require analysis. However, it is my contention that the nature of human suffering is not at all self-evident. In many ways we know very little about the content and extent of suffering. And, although it may not be sensible to borrow traditional scientific techniques for the study of suffering, we need as much intellectual penetration and rigorous analysis in order to clarify the nature of suffering as for any other scientific investigation. Moreover, there are good reasons for saying that we ought to direct much more of our attention to this humanistic aspect of medicine. We ought to remember that the existence of suffering is one of the main motives, if indeed not the most important motive, for undertaking the medical enterprise.

On health, ability and activity: Comments on some basic notions in the ICF

Nordenfelt L. (2006)

Purpose. The purpose of this article is to highlight and at the same time criticize the holistic view of health expressed in the "International Classification of Functioning, Disability and Health (ICF)". Particular attention will be paid to the idea suggested in the ICF that not only the ability to perform a specified action but also its actual performance is included in the person's health. My argument intends to show that this is an untenable position.
Method. The theoretical platform of this paper is philosophical action theory. My argument makes particular use of the distinctions between ability, opportunity, activity and will. My analysis also uses some insights from the contemporary philosophical discussion of health concepts.
Conclusions. Ability (or capacity) and its opposite disability (or incapacity) are essential ingredients in the implicit philosophy of health of the ICF. However, the ICF also puts an emphasis on the actual performance of actions. This is entailed by the performance qualifier that is included in the ICF. I give some arguments for questioning the relevance of this qualifier if it is intended to have a place in the concept of health or have a general function for decisions in health care or rehabilitation. Instead I suggest the introduction of an opportunity qualifier, which could fulfill some of the purposes intended for the performance qualifier.

On loving and hating my mentally retarded mother

Ronai, Carol Rambo (1997)

This article explores why I love and hate my mother. It is a
retrospective and ongoing participant observation of the phenomenon
of being the daughter of a mother with mental retardation. In it,
I make use of a layered account, an experimental, postmodern,
ethnographic reporting format which enables the researcher to use
as many resources as possible including social theory, lived
experience, and emotions. By using my own experience, I explore,
through first person narrative, the complex issues and emotions
involved. My conclusion is that the situation is fraught with
ambivalence because my present interactions with my mother are cast
in the light of a past where my mother simultaneously neglected and
protected me.

Online counselling: The motives and experiences of young people who choose the Internet instead of face to face or telephone counselling

King, R., Bambling, M., Lloyd, C., Gomurra, R., Smith, S., Reid, W., & Wegner, K. (2006)

This study used a Consensual Qualitative Research methodology to explore the motivations and experiences of young people who utilize the Internet for counselling over other counselling media. Semi-structured online group interviews (focus groups) were conducted with 39 participants from the Kids Help Line, a 24-hour national telephone and counselling service located in Australia. Analysis revealed five domains relevant to the adolescents' motives and experiences and the frequency of categories within and across cases were analyzed to generate and understand themes and patterns. Specific motivators and barriers are identified and discussed, as are implications for practice and continued research.

Online self-help tools for the relatives of persons with depression - a feasibility study

Stjernswärd S, Östman M, Löwgren J. (2012)

Background: The Internet's potential as health care tool should be explored. Aim: One objective was to determine the feasibility of constructing a digitally based tool through an iterative design process in cooperation with potential users. The tool's purpose is to alleviate hardships in daily life of relatives of persons with depression. An additional aim was to explore motivation and hindrances to using the tool as a basis for design decisions. Method: An iterative design approach, including data collection through focus groups and with paper and web-based prototypes, was used. Results: Cooperation with potential users, using an iterative design process, was valuable in developing the digitally based tool. Motivations (i.e. to create understanding and rehabilitate oneself) and hindrances (i.e. lack of time or energy) to using the tool were illuminated. Design decisions were based on consideration towards participants' privacy concerns, needs of support and the depression's influence on the relatives' daily life. Conclusion: Prototypes and cooperation with potential users were essential and valuable for the iterative development of the website.

Online self-help tools for the relatives of persons with depression - a feasibility study

Stjernswärd S, Östman M, Löwgren J. (2012)

Background: The Internet's potential as health care tool should be explored. Aim: One objective was to determine the feasibility of constructing a digitally based tool through an iterative design process in cooperation with potential users. The tool's purpose is to alleviate hardships in daily life of relatives of persons with depression. An additional aim was to explore motivation and hindrances to using the tool as a basis for design decisions. Method: An iterative design approach, including data collection through focus groups and with paper and web-based prototypes, was used. Results: Cooperation with potential users, using an iterative design process, was valuable in developing the digitally based tool. Motivations (i.e. to create understanding and rehabilitate oneself) and hindrances (i.e. lack of time or energy) to using the tool were illuminated. Design decisions were based on consideration towards participants' privacy concerns, needs of support and the depression's influence on the relatives' daily life. Conclusion: Prototypes and cooperation with potential users were essential and valuable for the iterative development of the website.

Operation slutstirrat

Anna Pella (2018)

Funkisfamiljen är en ny barnboksserie för barn 6-9 år om hur det är att växa upp med ett syskon som har en funktionsnedsättning. Den handlar om huvudpersonen Vide, 8 år, samt syskonen Tintin, 5 år, och Mio, 10 år. Mio har en medfödd hjärnskada och kan inte gå eller tala.

Seriens första bok, Operation slutstirrat, handlar om bemötande och hur det känns när ett barn på skolgården undrar om Mio är en riktig människa. Hur ska Vide göra med alla som frågar, undrar eller stirrar på Mio? Samtidigt som det är pinsamt blir Vide väldigt arg när det händer och det händer ofta. Tillsammans med sin nya klasskompis och sina syskon försöker Vide komma på sätt att handskas med situationer som uppstår.

Boken är skriven av journalisten Anna Pella som har sin egen familj som förlaga till böckerna. Anna Pellas första bok När du ler stannar tiden är en dagbok till hennes dotter Agnes som föddes med en svår hjärnskada. Den har uppmärksammats i flera stora medier, bland annat i Svt:s program "När livet vänder".

Anna Forsmark som illustrerat boken använder humor, värme och mycket detaljer i sina illustrationer. Hon har tidigare illustrerat boken Lilla nej-boken och Lek istället för bråk: 64 lekar för att förenkla vardagen med barn.

Optimism, social support, and well-being in mothers of children with autism spectrum disorder

Ekas, N. V., D. M. Lickenbrock, et al. (2010)

This study used structural equation modeling to examine the relationship between multiple sources of social support (e.g., partner, family, and friends), optimism, and well-being among mothers of children with ASD. Social support was examined as a mediator and moderator of the optimism-maternal well-being relationship. Moreover, the role of optimism as a mediator of the social support-maternal well-being relationship was also evaluated. Results revealed that family support was associated with increased optimism that, in turn, predicted higher levels of positive maternal outcomes and lower levels of negative maternal outcomes. In addition, partner and friend support were directly associated with maternal outcomes. Implications for the development of interventions directed at increasing the quality of social support networks are discussed. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Ordinary families, special children

Seligman, Milton & Darling, Rosalyn Benjamin (2007)

This popular clinical reference and text provides a multisystems perspective on childhood disability and its effects on family life. The volume examines how child, family, ecological, and sociocultural variables intertwine to shape the ways families respond to disability, and how professionals can promote coping, adaptation, and empowerment. Accessible and engaging, the book integrates theory and research with vignettes and firsthand reflections from family members.

Organiserande av stöd och service till barn med funktionshinder. Om projektnät, språkliga förpackningar och institutionella paradoxer

Larsson, M. (2001)

Avhandlingen är en studie av hur stöd och service organiseras kring fyra barn med funktionshinder och deras familjer. I denna service är normalt flera olika formella organisationer involverade, som barnhabilitering, förskola/skola/särskola, hjälpmedelscentral, assistentorganisationer, sjukvård m fl. Dessutom kan barnets och familjens situation vara komplicerad på många sätt. Själva funktionshindret kan vara komplext och förändras över tid. Familjens situation är också beroende av en mängd andra faktorer än själva funktionshindret.

Att organisera servicen innebär att konstruera insatser, att få dem att fungera, och att samordna med allt annat som sker. Både i litteraturen och i familjers berättelser beskrivs ofta svårigheter och brister i detta organiserande. Studien syftar därför till att undersöka hur organiserandet i praktiken går till, och vilka dess förutsättningar är.

Avhandlingen bygger på en undersökning av service och stöd kring fyra familjer med funktionshindrade barn. Barnens ålder varierade mellan 2 och 9 år, och de hade både fysiska och psykiska funktionshinder. Sammanlagt gjordes 83 intervjuer med involverad personal och föräldrar. Dessutom observerades 15 möten mellan personal och föräldrar, som i huvudsak fungerar som bakgrundsmaterial.

Själva organiserandet uppfattas i studien som ett begriplighetsskapande. Verkligheten ses som mångtydig, och genom att en gemensam förståelse skapas, ordnas och organiseras också handlingar. Servicen blir begriplig "som" just service på ett sätt som gör att den blir praktiskt möjlig att genomföra. Övriga involverade förstår vad som ska ske och hur de behöver bidra till det. Begriplighetsskapandet har vidare studerats som ett språkligt fenomen. Det är i språket som handlingar ges innebörder, och kan beskrivas på ett sätt så att man vet vad man kan förvänta sig framöver. Vidare är det genom språket som olika aktörer tar på sig ansvar för att utföra saker, och beskriva vad det är de tänker göra. Med hjälp av begreppet "språkliga förpackningar" undersöks hur ett gemensamt organiserande språk används. En språklig förpackning är en beskrivning av det man gör (eller tänker göra) som gör det begripligt för andra. Handlingen "förpackas" på ett sätt som gör den begriplig och rimlig.

Genom att undersöka hur de olika intervjupersonerna beskriver det de är engagerade i kring det enskilda barnet blir "projekt" synliga, som det sätt som insatser är ordnade. Inom ett projekt hänger insatser och handlingar samman, medan de mellan projekten är mer oberoende. Den övergripande strukturen på servicen är ett löst sammanhållet knippe av sådana projekt.

Organiserandet av verksamheten handlar också om hur praktiken begripliggörs som just insatser och service, och som något som bildar projekt. I en närgången analys av beskrivningarna i intervjuer och på möten har fyra aspekter av organiserandet kunnat särskiljas. För det första betecknas aktörernas aktiviteter på specifika sätt, och för det andra kontextualiseras beteckningarna på ett sätt som ger dem mening och innebörd. För det tredje konstrueras bilder av det funktionshindrade barnet, genom att vissa sidor av barnet fokuseras och lyfts fram. Bilderna av barnet är vävs samman med själva beskrivningen av insatserna, och fungerar som redskap för att förklara vad det är man gör, och motivera att man är engagerad i det. För det fjärde intar aktörerna egna positioner, genom de sätt de beskriver sin praktik och med hjälp av bilderna av barnet. Vanliga positioner är t ex för personalens del "professionell" och "kompetent", eller för föräldrarnas del "kompetent förälder".

De fyra aspekterna vävs samman i organiserandet och begripliggörandet av servicen. Det är genom en rimlig kombination av dem som en begriplig och trovärdig service kan etableras och upprätthållas.

I en vidare analys av organiserandets förutsättningar identifierades sex "institutionaliserade element", som fungerar som taget-för-givna utgångspunkter för servicen: familjecentrering, barnfokusering, utvecklingsorientering, expertrationalitet, användande av professionella diskurser, samt standardiserade former som "träning en gång i veckan". Dessa element är den grund på vilken servicen konstrueras och upprätthålls. Samtidigt finns det i den ordning som elementen utgör både motsättningar och paradoxer, tillsammans med vissa språkliga verktyg och strategier som de hanteras och "de-paradoxifieras" med. I studien diskuteras fyra paradoxer: fragmentering genom professionella diskurser, barnfokuseringens motsägelsefulla praktik, motsättning mellan expertrationalitet och familjecentrering, samt spänningen mellan institutionella projekt och lokal verklighet. Mot bakgrund av hur denna institutionalitet formar vilka projekt som är möjliga, och vilka positioner som aktörerna därmed erbjuds, beskrivs servicen slutligen som "projektnät".

I avhandlingen diskuteras resultaten både i relation till annan litteratur och till praktiken. En huvudpunkt är att organiserandet av servicen är något som ständigt pågår, som en aspekt av den konkreta servicen, snarare än något utöver denna. Alla aktörer är därmed konstant involverade i organiserandet, och frågan handlar mer om hur det görs, än om huruvida det behöver göras. En annan huvudpunkt är beskrivningen av två olika former av handlingslogik. Ofta beskrivs handling som något som syftar till ett visst mål, och den som handlar som någon som försöker göra detta så effektivt och bra som möjligt. I kontrast mot denna rationalitetslogik kan en lämplighetslogik beskrivas, där aktörer strävar efter att göra det som är lämpligt i en viss situation, givet hur man förstår situationen och sin egen position och roll i den. Denna lämplighetslogik stämmer väl med hur servicen beskrivits i studien. Med hjälp av denna logik kan svårigheten att genomföra vissa förändringar, t ex införande av individuella planer, förstås från ett nytt perspektiv. Det handlar då mindre om individuella attityder eller individuell kompetens, än om hur servicen i grunden är organiserad, och hur dessa förutsättningar kan hanteras i praktiken.

För det praktiska organiserandet diskuteras möjligheten att ta tillvara de resurser som finns i punkter där olika aspekter av servicen knyts samman. Det handlar om möten mellan personal och föräldrar, assistenter som är involverade i huvuddelen av servicen, samt kring vissa tekniska hjälpmedel. Möjligheterna att utveckla ett flexibelt organiserande är vidare beroende av aktörernas förmåga att aktivt reflektera och pröva alternativa perspektiv. Att utveckla det praktiska organiserande innebär då att odla denna reflektionsförmåga, bland annat för att finna nya sätt att ta tillvara de resurser som finns där servicen knyts samman. (Less)

Organiserande av stöd och service till barn med funktionshinder. Om projektnät, språkliga förpackningar och institutionella paradoxer.

Larsson, M. (2001)

Avhandlingen är en studie av hur stöd och service organiseras kring fyra barn med funktionshinder och deras familjer. I denna service är normalt flera olika formella organisationer involverade, som barnhabilitering, förskola/skola/särskola, hjälpmedelscentral, assistentorganisationer, sjukvård m fl. Dessutom kan barnets och familjens situation vara komplicerad på många sätt. Själva funktionshindret kan vara komplext och förändras över tid. Familjens situation är också beroende av en mängd andra faktorer än själva funktionshindret.

Att organisera servicen innebär att konstruera insatser, att få dem att fungera, och att samordna med allt annat som sker. Både i litteraturen och i familjers berättelser beskrivs ofta svårigheter och brister i detta organiserande. Studien syftar därför till att undersöka hur organiserandet i praktiken går till, och vilka dess förutsättningar är.

Avhandlingen bygger på en undersökning av service och stöd kring fyra familjer med funktionshindrade barn. Barnens ålder varierade mellan 2 och 9 år, och de hade både fysiska och psykiska funktionshinder. Sammanlagt gjordes 83 intervjuer med involverad personal och föräldrar. Dessutom observerades 15 möten mellan personal och föräldrar, som i huvudsak fungerar som bakgrundsmaterial.

Själva organiserandet uppfattas i studien som ett begriplighetsskapande. Verkligheten ses som mångtydig, och genom att en gemensam förståelse skapas, ordnas och organiseras också handlingar. Servicen blir begriplig "som" just service på ett sätt som gör att den blir praktiskt möjlig att genomföra. Övriga involverade förstår vad som ska ske och hur de behöver bidra till det. Begriplighetsskapandet har vidare studerats som ett språkligt fenomen. Det är i språket som handlingar ges innebörder, och kan beskrivas på ett sätt så att man vet vad man kan förvänta sig framöver. Vidare är det genom språket som olika aktörer tar på sig ansvar för att utföra saker, och beskriva vad det är de tänker göra. Med hjälp av begreppet "språkliga förpackningar" undersöks hur ett gemensamt organiserande språk används. En språklig förpackning är en beskrivning av det man gör (eller tänker göra) som gör det begripligt för andra. Handlingen "förpackas" på ett sätt som gör den begriplig och rimlig.

Genom att undersöka hur de olika intervjupersonerna beskriver det de är engagerade i kring det enskilda barnet blir "projekt" synliga, som det sätt som insatser är ordnade. Inom ett projekt hänger insatser och handlingar samman, medan de mellan projekten är mer oberoende. Den övergripande strukturen på servicen är ett löst sammanhållet knippe av sådana projekt.

Organiserandet av verksamheten handlar också om hur praktiken begripliggörs som just insatser och service, och som något som bildar projekt. I en närgången analys av beskrivningarna i intervjuer och på möten har fyra aspekter av organiserandet kunnat särskiljas. För det första betecknas aktörernas aktiviteter på specifika sätt, och för det andra kontextualiseras beteckningarna på ett sätt som ger dem mening och innebörd. För det tredje konstrueras bilder av det funktionshindrade barnet, genom att vissa sidor av barnet fokuseras och lyfts fram. Bilderna av barnet är vävs samman med själva beskrivningen av insatserna, och fungerar som redskap för att förklara vad det är man gör, och motivera att man är engagerad i det. För det fjärde intar aktörerna egna positioner, genom de sätt de beskriver sin praktik och med hjälp av bilderna av barnet. Vanliga positioner är t ex för personalens del "professionell" och "kompetent", eller för föräldrarnas del "kompetent förälder".

De fyra aspekterna vävs samman i organiserandet och begripliggörandet av servicen. Det är genom en rimlig kombination av dem som en begriplig och trovärdig service kan etableras och upprätthållas.

I en vidare analys av organiserandets förutsättningar identifierades sex "institutionaliserade element", som fungerar som taget-för-givna utgångspunkter för servicen: familjecentrering, barnfokusering, utvecklingsorientering, expertrationalitet, användande av professionella diskurser, samt standardiserade former som "träning en gång i veckan". Dessa element är den grund på vilken servicen konstrueras och upprätthålls. Samtidigt finns det i den ordning som elementen utgör både motsättningar och paradoxer, tillsammans med vissa språkliga verktyg och strategier som de hanteras och "de-paradoxifieras" med. I studien diskuteras fyra paradoxer: fragmentering genom professionella diskurser, barnfokuseringens motsägelsefulla praktik, motsättning mellan expertrationalitet och familjecentrering, samt spänningen mellan institutionella projekt och lokal verklighet. Mot bakgrund av hur denna institutionalitet formar vilka projekt som är möjliga, och vilka positioner som aktörerna därmed erbjuds, beskrivs servicen slutligen som "projektnät".

I avhandlingen diskuteras resultaten både i relation till annan litteratur och till praktiken. En huvudpunkt är att organiserandet av servicen är något som ständigt pågår, som en aspekt av den konkreta servicen, snarare än något utöver denna. Alla aktörer är därmed konstant involverade i organiserandet, och frågan handlar mer om hur det görs, än om huruvida det behöver göras. En annan huvudpunkt är beskrivningen av två olika former av handlingslogik. Ofta beskrivs handling som något som syftar till ett visst mål, och den som handlar som någon som försöker göra detta så effektivt och bra som möjligt. I kontrast mot denna rationalitetslogik kan en lämplighetslogik beskrivas, där aktörer strävar efter att göra det som är lämpligt i en viss situation, givet hur man förstår situationen och sin egen position och roll i den. Denna lämplighetslogik stämmer väl med hur servicen beskrivits i studien. Med hjälp av denna logik kan svårigheten att genomföra vissa förändringar, t ex införande av individuella planer, förstås från ett nytt perspektiv. Det handlar då mindre om individuella attityder eller individuell kompetens, än om hur servicen i grunden är organiserad, och hur dessa förutsättningar kan hanteras i praktiken.

För det praktiska organiserandet diskuteras möjligheten att ta tillvara de resurser som finns i punkter där olika aspekter av servicen knyts samman. Det handlar om möten mellan personal och föräldrar, assistenter som är involverade i huvuddelen av servicen, samt kring vissa tekniska hjälpmedel. Möjligheterna att utveckla ett flexibelt organiserande är vidare beroende av aktörernas förmåga att aktivt reflektera och pröva alternativa perspektiv. Att utveckla det praktiska organiserande innebär då att odla denna reflektionsförmåga, bland annat för att finna nya sätt att ta tillvara de resurser som finns där servicen knyts samman.

Oskars pappa har en CP-skada

Eva-Lena Söderlund (2016)

illustrationer: Eva Akne

Barn/ungdom

Här får vi en beskrivning av hur det kan vara att ha en förälder med CP-skada.

Outcome studies of family therapy in child and adolescent depression

Cottrell D. (2003)

There is surprisingly little good-quality evidence for the effectiveness of family systemic interventions with child and adolescent depression given the prevalence of depression and the demonstrated association with a range of family factors. What studies there are suggest the possibility of family therapy being an effective intervention but more research is needed before firm conclusions may be drawn. Family interventions may be more effective in children than in adolescents and where other family members are depressed. It is possible that family interventions continue to bring about improvement in symptoms after cessation of treatment. What research there is evaluates older structural models of therapy: there is a real need for more evaluation of newer models of practice.

Outcomes of an educational intervention for the family of a person with bipolar disorder: a 2-year follow-up study

Jönsson, P., Wijk, H., Danielsson, E., & Skärsäter, I. (2011)

This study aimed to analyse the outcomes of an educational intervention for family members living with a person with bipolar disorder. A longitudinal study was conducted comprising a 10-session educational intervention designed for families with members in outpatient mental health care. Thirty-four family members agreed to participate. Data were collected on five occasions, at baseline and during a 2-year follow-up through self-assessment instruments: the Carers of Older People in Europe Index, the Jalowiec Coping Scale-40, the Sense of Coherence questionnaire and the Social Adaptation Self-evaluation Scale. The results showed that the condition had a considerable negative impact on the family members as carers, but the educational intervention increased their understanding, which facilitated the management of their lives. A significant improvement in stress management was seen over time and social functioning was retained. The study showed that families living with one member with bipolar disorder benefited from the educational intervention in terms of increasing understanding of the condition and reducing stress. Mental health care needs to develop educational interventions further and offer the families support to strengthen their ability to manage with the situation.

Out-of-school time activity participation profiles of children with physical disabilities: a cluster analysis

King G, Petrenchik T, DeWit D, McDougall J, Hurley P, Law M. (2010)

OBJECTIVE:
To determine out-of-school activity participation profiles of school-aged children with physical disabilities.
METHODS:
Activity participation profiles were determined by cluster analysing 427 children's responses on multiple dimensions of participation (intensity, location, companionship, enjoyment, preference) in five activity types (recreational, active physical, social, skill-based, self-improvement). Socio-demographic, child, parent, family and environmental predictors of group membership were determined, along with child functioning, socio-demographic, self-concept and social support variables significantly associated with group membership.
RESULTS:
The cluster analysis revealed four groups, labelled Social Participators (a highly social and neighbourhood-focused group), Broad Participators (a group of high participators who enjoy participation), Low Participators (a group with low enjoyment and weak preferences) and Recreational Participators (a group of younger children who participate in recreational activities with family members). The groups showed meaningful differences across a range of socio-demographic, child, parent, family and environmental variables.
CONCLUSIONS:
The findings support an affective and contextual view of participation, indicating the importance of motivational theory and a person-environment approach in understanding the complexity of children's out-of-school activity participation.

Overstretched: European families up against the demands of work and care

Kröger T, Sipilä J, (eds). (2005)

Overstretched provides fresh perspectives on the reality of European family life where care and paid work need to be woven together on a daily basis, offering an opportunity to discuss and evaluate care policies in a new light.
A collection of essays providing new perspectives on the reality of European family life where care and paid work need to be woven together on a daily basis.
Focuses on families who live under strained conditions, such as lone parent families, immigrant families, and families who care simultaneously for both their children and an elderly family member.
Based on interviews with families from Finland, France, Italy, Portugal and the UK.
Develops methods for doing comparative qualitative analysis in practice.
Offers new insights into the problems of gender balance in caring, and the significance of cultural notions and working hours.
Offers an opportunity to discuss and evaluate care policies in a new light.

Overview of fetal alcohol spectrum disorders for mental health professionals

Clarke ME, Gibbard WB. (2003)

Fetal Alcohol Spectrum Disorders (FASD), including Fetal Alcohol Syndrome (FAS) and related disorders such as Alcohol Related Neurodevelopmental Disorder (ARND) are the most common form of developmental disability and birth defects in the western world. Early recognition and accurate diagnosis by mental health professionals remains a key issue. This article reviews history, mechanisms of alcohol exposure, epidemiology, diagnosis and management of FASD.

Paired Reading. Ett försök i sju kommuner med lästräning för familjehemsplacerade barn

Tideman, E., Sallnäs, M., Vinnerljung, B., & Forsman, H. (2013)

Sju kommuner genomförde ett försök med Paired
Reading (parläsning) med syfte att förbättra läsförmågan
hos familjehemsplacerade barn. I försöket
utbildades familjehemsföräldrar i en enkel metod
som bygger på läsning med barnen 20 minuter/dag,
tre gånger i veckan under en 16-veckorsperiod. Försöket
utvärderades genom jämförelser av barnens
testade läsfärdigheter före (T1) och efter lästräningen
(T2). I jämförelserna minskades testvärdena vid
T2 med ett estimat av tidseffekten (den förbättring
som förväntas även om barnen inte hade deltagit i
försöket). Dessutom samlade vi in information om
hur läsningen fungerade i familjehemmen. Rapporten
baseras på analyser av 81 barn, huvudsakligen
placerade i långvarig familjehemsvård, som gick i
årskurserna 2-6 (8-12 år).
Två frågor ställdes i utvärderingen:
1. Är det möjligt att genomföra ett program där
familjehemsföräldrar regelbundet och under en längre
sammanhängande tid läser med de placerade barnen?
Ja, det är möjligt. Bortfallet var mycket lågt
(2.4% bland de som påbörjade försöket) och enligt
familjehemmens rapportering läste den stora
majoriteten (90%) minst mellan två och tre gånger/
vecka, det vill säga de hade enligt vår bedömning
genomfört programmet på ett godtagbart sätt.
2. Förbättrar Paired Reading barnens läsförmåga?
Oavsett ålder/årskurs fick barnen vid T2 bättre
resultat på testerna där läsåldern graderades (LäSt
NonOrd och LäSt Ord). Förbättringen motsvarade
i genomsnitt 11 månader. Om man räknar bort
tidseffekten förbättrade barnen sin läsålder med
cirka sju månader ("nettoförbättring"). Barnen
förbättrade också sitt ordförråd markant, mätt med
ett deltest i WISC-IV.
Ytterligare två tester administrerades till de
yngre barnen i åk 2-3; Bokstavskedjor och Ordkedjor.
Även dessa testresultat visade på signifikanta
förbättringar över tid. Det innebär att de yngre barnen
förbättrade sin läsförmåga enligt samtliga fem
tester (WISC-IV Ordförråd, Läst NonOrd, LäSt
Ord, Bokstavskedjor och Ordkedjor).
För de äldre barnen i åk 4-6 användes ytterligare
fem tester utöver LäSt Non Ord/LäSt Ord och
Ordförråd i WISC-IV. Av dessa fem tester visade
ett på en statistisk signifikant förbättring (Teckenkedjor)
och ett visade en tendens till förbättring
(Ordkedjor). Tre visade bara på svaga tendenser till
förbättring (Meningskedjor och läsförståelsetesterna
Draken och Isbjörnen). De äldre barnen hade med
andra ord klara förbättringar på fyra av åtta tester
(WISC- IV Ordförråd, LäSt NonOrd och LäSt
Ord samt Teckenkedjor), en tendens till förbättring
på ett test (Ordkedjor) men bara svaga tendenser
till förbättring på tre tester (Meningskedjor, Draken
och Isbjörnen).
Sammanfattande slutsats
Paired Reading är ett genomförbart lässtödsprogram
för familjehemsplacerade barn. Det har i
denna före-efterstudie visat sig förbättra läsförmå-
gan hos barn i årskurs 2-6.

Palliativ vård vid demens

Sundelöf Johan, Tegman Petra (2019)

Demens är ett obotligt, fortskridande sjukdomstillstånd som förr eller senare leder till döden. Genom ökad kunskap och rätt verktyg hos personalen kan både den som är sjuk och närstående få uppleva bästa möjliga livskvalitet och en värdig tid i livets slutskede. Ytterst handlar det om att teamet samarbetar strukturerat för att skapa förutsättningar för god palliativ vård.

Den här boken utgår från förhållningssättet i palliativ vård vid demens som kan sammanfattas med tre ord. Hjärna för den kunskap som behöver finnas, hjärta för omsorgen och händer för den livsnödvändiga närhet som skapar trygghet, livskvalitet och ro inombords. Boken är förankrad i forskningen och baseras på nationella och europeiska riktlinjer. Varje temakapitel innehåller fallbeskrivningar och frågor för reflektion enskilt eller i grupp.

Målgruppen är sjuksköterskor, läkare och personal som arbetar med personer med demens. Boken kan också användas inom grund- och fördjupningsutbildningar.

Palliative and Supportive Care

Olsson, A., Markhede, I., Strang, S., & Persson, L. I. (2010)

Supportive and palliative care services are integral to the provision of comprehensive cancer care (and no cancer service should call itself 'comprehensive' without a comprehensive supportive and palliative care team). All people diagnosed with cancer should have access to supportive care and the one in two people who will have their lives shortened as a result of cancer need to be able to access palliative care. The skill base, competencies and clinical evidence base for these disciplines is shared. Properly resourced and integrated supportive and palliative care services have been shown to deliver improved health outcomes without compromising life expectancy to:
. people with cancer
. their caregivers (while in the role and subsequently), and
. health services that are prepared to adequately invest in these services, with more efficient use of resources.

In order to achieve these improved health outcomes, early identification of people who have more complex needs becomes a responsibility of each member of the clinical cancer care team. Systematic assessment of current and likely future needs is imperative to improve the patient-defined outcomes that are necessary to live well with cancer or to ensure that life goals are met if premature death will occur because of cancer.

Pappa, vad är schizofreni?

Roger Zetterström (2013)
Den här boken vänder sig till barn och unga som vill lära sig om de vanligaste psykiska sjukdomarna. Boken berättar enkelt och översiktligt hur 12 psykiska sjukdomar yttrar sig och hur de behandlas.
Roger Zetterström, bokens författare, är skötare i psykiatri och socionom, han arbetar som personligt ombud för vuxna med långvarig psykisk ohälsa.

Men do care! A gender-aware and masculinity-informed contribution to caregiving scholarship.

Wallroth, V. (2016)

In caregiving literature, it is often the female gender that has been the focus of attention,
and in particular women's unpaid labor. Studies also tend to make comparisons
between men's and women's caregiving, using men's caregiving experiences to show
not only that women face greater burdens, but also that men's needs can be disregarded.
This means that while gender analyses are not uncommon in the caregiving literature,
gender tends to be equated with womanhood. The research problem that this dissertation
addresses is therefore the gender bias that characterizes caregiving scholarship
at present and the fact that this bias is impeding us from moving the debates on
care and caregiving forward. The aim of the dissertation is twofold. Firstly, it attempts
to contribute to the rectification of the gender bias in question by focusing on men's
caregiving and answering the following research questions: What motivates men to
provide care for their elderly parents? How do adult sons experience caregiving? What
do adult sons think that care and caregiving are, i.e. what are their perspectives on
care? Secondly, this dissertation also aims to explore whether a gender-aware and
masculinity-informed perspective can be used to enhance our understanding of caregiving.
Thus, through a phenomenological analysis of interviews with 19 caregiving
adult sons and sons-in-law, this dissertation discusses how motives, experiences and
perspectives, which have so far been interpreted as unique to women, are also matters
that men talk about and consider important in caregiving. The dissertation argues
therefore that much could be gained if we were to rectify the gender bias that characterizes
the literature on family caregiving and explore caregiving men in the genderaware
and masculinity-informed way that is lacking in this literature at present. Inspired
by the debate within studies of masculinity, the dissertation argues that within
the debate on care there is a hegemony of care which has so far tended to exclude
men's perspectives on caregiving because literature on family caregiving has regarded
women as the ideal caregivers. This dissertation shows that a gender-aware and masculinity-informed
perspective on care can increase our understanding of family caregiving
and contribute to the rectification of the gender bias that care research suffers
from. Against this backdrop, it is proposed that caregiving men should not solely be
regarded as empirically interesting. This is because they are an unexploited and theoretically
profuse source of information about caregiving.
Keywords: care, family caregiving, gender, men, masculinity, motive, experience, perspective

Men’s violence against women: a challenge in antenatal care

Stenson, K. (2004)

Men's violence against women is a universal issue affecting health, human rights and gender-equality. In pregnancy, violence is a risk for both the mother and her unborn child.The overall aims were: to determine the prevalence of such violence in a Swedish pregnant population, to investigate pregnant women's attitudes to questioning about exposure to violence, and to evaluate experience gained by antenatal care midwives having routinely questioned pregnant women regarding violence.All women registered for antenatal care in Uppsala, Sweden, during 6 months were assessed regarding acts of violence. The Abuse Assessment Screen (AAS) was used twice during pregnancy and again after delivery when the women were asked an open-ended written question regarding attitudes to questioning about violence. Midwives' experiences regarding routine assessment were evaluated in focus group discussions.The AAS questions were answered by 93% (1,038) of those eligible. Physical abuse by a partner or relative during or shortly after pregnancy was reported by 1.3%, and by 2.8% when the year preceding pregnancy was included. Lifetime sexual abuse was reported by 8.1%. Repeated questioning increased the abuse detection rate. Abused women reported more previous ill-health, and women physically abused during pregnancy more pregnancy terminations than did non-abused women. Abuse assessment was found entirely acceptable by 80%, both acceptable and unacceptable/disagreeable by 5% and solely unacceptable/ disagreeable by 3%, while 12% were neural. Abused and non-abused women did not differ regarding disinclination to answer the abuse questions. According to the midwives the delicacy of the subject and the male partners' presence were the most prominent remaining obstacles to routine determination of violence. Routines are required to make questioning about violence an integral part of antenatal care. This would necessitate a private appointment for the woman, knowledge among care providers about the nature of men's violence, and awareness of referral options.

Me-ness and we-ness in a modified everyday life close to death at home [Elektronisk resurs].

Carlander, I. (2011)

The overarching aim of this thesis was to describe how family members experienced everyday life with life-threatening illness close to death, with focus on self-image and identity. The thesis comprises four papers, each with a specific aim to illuminate various aspects of the phenomenon under study. The study population consisted of 29 participants; ten family caregivers and five families, including five patients with life threatening illness and their family members. Data were based on retrospective single interviews (paper I), prospective individual, couple and group interviews with the families over six to eighteen month (papers II-III). Interpretive description approach (papers I, II, IV), narrative method (paper III) and secondary analysis (paper IV) were used to analyze data. The findings show how living close to death influences everyday life at home, at several levels (papers I-IV). From the perspective of the dying person, narrations of daily situations was described by four themes related to identity and everyday life; inside and outside of me, searching for togetherness, my place in space and my death and my time. The changing body, pain, fatigue, decreased physical capacity and changed appearance, appeared to influence the dying person's need for altered knowledge and community, and as a result the patterns of interaction within the families changed. The strive for knowledge and community took place at home, an arena for identity work and the conscious search for meaning, knowledge and community; it was limited by time and inevitable death (paper III). For the family member, life close to death can mean sharing life with a changing person in a changing relationship (paper II). It may mean that everyday life needs to be modified in order for it to work (papers I-IV). New patterns of dependence and an asymmetrical relationship affect all involved (papers III-IV). Daily life close to death is about finding the space to promote the individual self-image, me-ness, at the same time as finding new ways of being a family; we-ness (paper II). Regardless of being the ill person or not, the family members we interviewed had to face impending death, which challenged earlier ways of living together (papers I-IV). From the perspective of the relatives, the everyday life of caring for the dying family member was characterized by challenged ideals, stretched limits and interdependency (paper I). Situations that challenged the caregivers' self-image were connected to intimacy, decreasing personal space and experiences such as "forbidden thoughts". The findings suggest that the bodily changes were of importance for the self-image, and that the former approach to the own body was important in the process of experiencing the body. The person living close to death was in transition to something new; being dead in the near future. One way of handling the struggles of everyday life was to seek togetherness, strive to find other persons with similar experiences while sharing thoughts and feelings. Togetherness was sought within the family, in the health care system and on the internet; a sense of togetherness was also sought with those who had already died. The other family members were also in transition as the future meant living on without the ill family member and changing their status to for example being a widow or being motherless. Identity work close to death denotes creating an access ramp into something new; a transition into the unknown. From a clinical perspective, this study emphasizes the significance of creating a climate that allows caregivers to express thoughts and feelings.

Mental disorders and cause-specific mortality

Joukamaa, M., Heliovaara, M., Knekt, P., Aromaa, A., Raitasalo, R., & Lehtinen, V. (2001)

Background The impact of clinically diagnosed mental disorders on mortality in the general population has not been established.

Aims To examine mental disorders for their prediction of cause-specific mortality.

Method Mental disorders were determined using the 36-item version of the General Health Questionnaire and the Present State Examination in a nationally representative sample of 8000 adult Finns.

Results During the 17-year follow-up period 1597 deaths occurred. The presence of a mental disorder detected at baseline was associated with an elevated mortality rate. The relative risk in men was 1.6(95% confidence interval 1.3-1.8) and in women, 1.4 (95% Cl 1.2-1.6). In men and women with schizophrenia the relative risks of death during the follow-up period were 3.3 (95% Cl 2.3-4.9) and 2.3 (95% Cl 1.3-3.8) respectively, compared with the rest of the sample. In both men and women with schizophrenia the risk of dying of respiratory disease was increased, but the risk of dying of cardiovascular disease was increased only in men with neurotic depression.

Conclusions Schizophrenia and depression are associated with an elevated risk of natural and unnatural deaths.

Mental health and creating safety: the participation of relatives in psychiatric treatment and its significance

Piippo, J. and J. Aaltonen (2008)

Aims and objectives. We aimed to discover the significance of the participation of relatives in the treatment process using the principles of the Need-Adapted Approach. The study is based on joint interviews with 10 psychiatric patients, their relatives and a multiprofessional treatment team. Background. The Need-Adapted Approach was developed in Finland for difficult psychiatric problems in public sector psychiatry. The central feature of the approach is the active participation of patients and their relatives in planning the treatment and in the treatment process. It emphasises horizontal expertise and open discussions between the patient, relatives and professionals. Design. A qualitative method based on the grounded theory approach was used. Method. The main focus in the analysis was on how the informants experienced the significance of the participation of their relatives in the treatment process. Results. Seven categories and one core category were identified. Primary categories which increased safety were: (1) shared understanding, (2) a new kind of relationship opens up and (3) being able to cope with life. Secondary categories were: (4) exclusion and (5) need for a one-to-one relationship. Ambivalent categories were: (6) whom or what one can believe and (7) keeping the illness secret. One core category, safety, was identified among the categories. A theoretical model was created for clinical purposes. Conclusions. When practiced correctly, the Need-Adapted Approach makes it possible to create circumstances in psychiatric treatment where the patient and his/her relatives can experience increased safety in spite of the anxiety connected to the psychiatric difficulties. Relevance to clinical practice. Clinical workers and nursing personnel can use our findings in their practical work with psychiatric patients and their relatives. Our findings support further theoretical considerations concerning safety and can be used as guidelines for nursing personnel in their work

Mental health and reactions to caregiving among next of kin of older people (65+) with multi-morbidity discharged home after hospitalization

Behm L., Björkman E., Ahlström G. (2018)

Abstract
BACKGROUND: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress. AIM: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving. METHODS:
This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kincharacteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed. RESULTS: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem. CONCLUSIONS: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.

Mental health professional support in families with a member suffering from severe mental illness: a grounded theory model

Gavois, Helena, Paulsson, Gun, & Fridlund, Bengt (2006)

The aim of this study was to develop a model of mental health professional (MHP) support based on the needs of families with a member suffering from severe mental illness (SMI). Twelve family members were interviewed with the focus on their needs of support by MHP, then the interviews were analyzed according to the grounded theory method. The generated model of MHP support had two core categories: the family members' process from crisis to recovery and their interaction with the MHP about mental health/illness and daily living of the person with SMI. Interaction based on ongoing contact between MHP and family members influenced the family members' process from crisis towards recovery. Four MHP strategies--being present, listening, sharing and empowering--met the family members' needs of support in the different stages of the crisis. Being present includes early contact, early information and protection by MHP at onset of illness or relapse. Listening includes assessing burden, maintaining contact and confirmation in daily living for the person with SMI. Sharing between MHP and family members includes co-ordination, open communication and security in daily living for the person with SMI. Finally, the MHP strategy empowering includes creating a context, counselling and encouraging development for the family members. The present model has a holistic approach and can be used as an overall guide for MHP support in clinical care of families of persons with SMI. For future studies, it is important to study the interaction of the family with SMI and the connection between hope, coping and empowerment.

Mervärde för alla föräldrar genom samlokalisering?

Abrahamsson, Agneta & Bing, Vibeke (2011)

Barnens hälsa påverkas redan tidigt i livet av föräldrarnas livsvillkor. Låg social status, brist på vänner och stress tidigt i livet leder till hälsoskillnader. Familjecentraler med en öppen förskola och förebyggande socialt arbete är en tidig insats och en lågriskstrategi som riktar sig till alla. Den har goda förutsättningar för att stärka föräldrarnas tillit och gemenskap med andra och kan bidra till att minska hälsoskillnader genom att främja barnens hälsoutveckling. Syftena med utvärderingen av de 16 familjecentralerna var att undersöka i vilken mån besökarna är representativa för befolkningen i upptagningsområdet och av vilka anledningar föräldrarna besöker öppna förskolan på familjecentralen. Jämförelse mellan befintlig befolkningsdata i upptagningsområdena och föräldrabesökares bakgrundsdata visar att familjecentralen i huvudsak når en representativ del av befolkningen. Föräldrar använder sig av familjecentralen för att få råd, utbyte av erfarenheter, barnens skull och att umgås med andra. I synnerhet för invandrare har familjecentralen stor betydelse för att komma in i det svenska samhället.

Meta-analysis of the effectiveness of individual intervention in the controlled multisensory environment (Snoezelen®) for individuals with intellectual disability

Lotan, M., & Gold, C. (2009)

BACKGROUND:
The Snoezelen is a multisensory intervention approach that has been implemented with various populations. Due to an almost complete absence of rigorous research in this field, the confirmation of this approach as an effective therapeutic intervention is warranted.
METHOD:
To evaluate the therapeutic influence of the Snoezelen approach. Twenty-eight relevant articles relating to individual (one-to-one) Snoezelen intervention with individuals with intellectual and developmental disabilities (IDD) were reviewed. A meta-analysis regarding the significance of the reduction of maladaptive behaviour and the enhancement of adaptive behaviour was implemented. An analysis of standardised mean differences was used through the use of fixed effect models.
RESULTS:
The primary finding was that the Snoezelen approach, when applied as an individual intervention for individuals with IDD, enabled significant and large effect size in adaptive behaviours, with generalisation to the participants' daily life.
CONCLUSIONS:
Weaknesses in the examined research methodologies, the heterogeneity between research designs, the small number of available research projects, and the small number of participants in each research project, prevent a confirmation of this method as a valid therapeutic intervention at this time.

Methodological issues in assessing psychological adjustment in child witnesses of intimate partner violence

Clements, C. M., Oxtoby, C., & Ogle, R. L. (2008)

This review summarizes a growing number of methodological concerns emerging from research on child witnesses of intimate partner violence (IPV). A brief summary of various psychological, biological, and cognitive impairments associated with witnessing IPV is presented. Directions for future research in this area are explored with particular attention paid to experimental design. Advantages and disadvantages of retrospective, cross-sectional, and longitudinal designs are evaluated. Suggested improvements include the use of multiple informants, behavioral observations, and prospective, longitudinal assessment.

Migration och Folkhälsa. Kapitel 9 i ”Folkhälsorapport”.

Hjern A. (2009)

I en alltmer globaliserad värld får
fler möjlighet att bosätta sig i ett annat land
än det de föddes i. Som ett resultat av detta ökar andelen utlandsfödda i de flesta höginkomstländer, så även i Sverige. Den 31 december år 2006 hade 17
procent av den svenska befolkningen utländsk bakgrund, dvs. var antingen
född i något annat land än Sverige (13 procent) eller hade två utlandsfödda
föräldrar (4 procent). Av dessa var 52 000 utlandsadopterade. Därtill kommer
asylsökande och andra migranter som saknar uppehållstillstånd, som inte finns med i befolkningsstatistiken.
Många utlandsfödda har
flyttat från länder där risken att smittas av vissa
svåra och långvariga infektioner är betydligt större än i Sverige. De viktigaste
av dessa smittämnen är hepatit B och C, tuberkulos och hiv.
Migranterna tar med sig sin livsstil till det nya landet, t ex kost- , tobaksoch
alkoholvanor. Mötet med det nya landets kultur leder till att livsstilen
förändras, men lång tid efter invandringen kan in
flytande av ursprungslandets
livsstil ofta spåras i invandrares sjukdomsmönster. Så har t.ex. män med
ursprung i Medelhavsområdet en högre risk att drabbas av tobaksrelaterad
sjuklighet, som lungcancer jämfört med genomsnittsbefolkningen i Sverige,
men samtidigt har de en lägre risk att drabbas av alkoholrelaterad sjuklighet,
som levercirrhos.
Många betydande folkhälsoproblem orsakas av miljöfaktorer i samspel med
en medfödd sårbarhet, t.ex. allergiska sjukdomar och diabetes. Förekomsten
av de genetiska faktorer som orsakar denna sårbarhet skiljer sig mellan olika
befolkningar i världen och fortsätter att påverka risken för dessa sjukdomar
hos migranter även i det nya landet .
Flyktingen har ett annat utgångsläge än den som
flyttar till ett annat land
för att arbeta eller för att bilda familj. Personer som
flyr från sitt hemland har
nästan alltid levt en tid under stor stress innan de
flyr. Själva
flykten är ofta
omgärdad av umbäranden och hot, och många familjer splittras under långa
perioder. Efter ankomsten till det nya landet väntar en tid av ovisshet under
asylprocessen innan det nya livet kan ta sin början. Detta leder sammantaget
till att psykisk ohälsa är ett större problem hos nyanlända
flyktingar än hos
andra grupper av migranter,

Min mamma rullstolshjälten

Ida Berner (2018)

"Jag vill ha en annan mamma, en som kan springa ..."

Kerstins fotbollslag ska spela match mot föräldrarna. Kerstins pappa, som brukar vara bäst på plan, kan inte vara med så mamma ska med i stället. Men mamma sitter ju i rullstol, hon kan ju inte spela.

Mamma kommer till matchen och rycker dessutom in som värsta hjälten.

Det här är en berättelse om att ha en förälder som inte är som alla andra, men som kan vara världsbäst ändå!

Min mor slangen og mig

M. LaVilla Labial (2013)

Denna danska bilderbok bygger på vikten av att prata med barn när deras förälder eller annan vuxen som barnet bor tillsammans med drabbas av psykisk ohälsa.I slutet av boken diskuterar författaren effekterna för barnen och familjen i sin helhet då någon vuxen drabbas av ångest och/eller depression och vad det gör med familjen. Vilka situationer och frågeställningar som kan uppkomma och som behöver förklaras och besvaras för att barnen ska förstå vad som sker. Boken riktar sig till barn mellan 3-10 år.
Boken går att laddda ner på www.issuu.com

Min stroke

Taylor Bolte, Jill (2009)

På morgonen den 10 december 1996 förändrades Jill Bolte Taylors liv totalt. Den 37-åriga hjärnforskaren drabbades av en kraftig stroke då ett blodkärl brast i vänstra halvan av hjärnan. Inom loppet av några timmar försvann förmågan att tala, läsa, skriva, gå och hennes minne var i det närmaste helt utraderat.

Tiden som följde blev en berg- och dalbana mellan två verkligheter: den euforiska känslan från höger hjärnhalva som styr känslor och kreativitet, och de logiska rationella tankarna från vänstra halvan som talade om för Jill att hon var sjuk och fick henne att söka hjälp i tid.

Det tog åtta år för Jill Bolte Taylor att tillfriskna helt och hållet. Tack vare en otrolig envishet, sin kunskap om hur den mänskliga hjärnan fungerar och inte minst med stor hjälp av sin fantastiska mamma lyckades hon få tillbaka det liv hon en gång hade. Idag anser Jill att stroken var det bästa som kunde hända henne. Genom att tvingas använda sin högra hjärnhalva insåg hon att vi människor kan tillgodogöra oss de känslor av frid och välbehag som den vänstra halvan gör sitt bästa för att trycka ner.

Min stroke tar läsaren med på en fascinerande resa in i den mänskliga hjärnan. Det är både en värdefull hjälp för alla som drabbats av någon form av hjärnskada och ett känslosamt vittnesmål om att djup inre frid är möjligt att uppnå för alla människor, vid alla tillfällen. Boken har i flera veckor legat på topp 10 på New York Times bästsäljarlista för faktaböcker.

Min tur att berätta. Barns röster om att leva med våld

BRIS, Stadsmissioner (2020)

Flera tusen barn befinner sig varje år
på ett skyddat boende med sin mamma,
på flykt undan det livsfarliga våldet
hemma. Hur påverkas barnets liv av
våldet och av att tvingas bryta upp från
sin vardag? I den här rapporten lyfts
barns egna röster och erfarenheter,
tillsammans med aktuell kunskap.
Rapporten visar hur barns behov och
rättigheter många gånger blir sekundära
när barnet i praktiken blir medföljande
till sin mamma. Det blir tydligt att
rättssäkerheten måste stärkas för barn
som utsätts för våld i hemmet.

Minding the money: A growing responsibility for informal carers.

Tilse C, Setterlund D, Wilson J, Rosenman L. (2005)

Managing the assets of older people is a common and potentially complex task of informal care with legal, financial, cultural, political and family dimensions. Older people are increasingly recognised -as having significant assets, but the family, the state, service providers and the market have competing interests in their use. Increased policy interest in self-provision and user-charges for services underline the importance of asset management in protecting the current and future health, care and accommodation choices of older people. Although 'minding the money' has generally been included as an informal care-giving task, there is limited recognition of either its growing importance and complexity or of care-givers' involvement. The focus of both policy and practice have been primarily on substitute decision-making and abuse. This paper reports an Australian national survey and semi-structured interviews that have explored the prevalence of non-professional involvement in asset management. The findings reveal the nature and extent of involvement, the tasks that informal carers take on, the management processes that they use, and that 'minding the money' is a common informal care task and mostly undertaken in the private sphere using some risky practices. Assisting informal care-givers with asset management and protecting older people from financial risks and abuse require various strategic policy and practice responses that extend beyond substitute decision-making legislation. Policies and programmes are required: to increase the awareness of the tasks, tensions and practices surrounding asset management; to improve the financial literacy of older people, their informal care-givers and service providers; to ensure access to information, advice and support services; and to develop better accountability practices.

Minor children of palliative patients: a systematic review of psychosocial family interventions

Kühne, F., Krattenmacher, T., Beierlein, V., Grimm, J.C., Bergelt, C., Romer, G. & Möller, B. (2012)

Although the whole family is affected by a parent's palliative disease, palliative care research does not yet routinely consider patients' minor children. Children's and adolescents' psychosocial functioning may be impaired during prolonged parental disease with poor prognosis. Therefore, more and more health care providers are establishing clinical initiatives for families of palliative patients with minor children. However, the number of these family interventions, as well as their theoretical and empirical backgrounds and evidence base, has yet to be determined. The purpose of this study was to systematically review structured and published interventions for this target group, as well as empirical studies on these interventions. The evidence base and impact of interventions on families were considered. Literature published between 1980 and present focusing on psychosocial family-, child- or parent-centered interventions during palliative care was retrieved from PsycINFO®, Embase, MEDLINE®, CINAHL®, and PSYNDEX databases. Five interventions met the inclusion criteria. Programs focused on different populations, had diverse empirical and theoretical backgrounds and features, and were evaluated by studies of varying methodological quality. This systematic review illustrates the lack of well designed and elaborated intervention concepts and evaluation studies in this field, highlighting the necessity of conceptual and methodological rigor to inform clinical practice on a sustainable basis in the future.

Missbrukande föräldrar, utsatta barn och socialt arbete

Andersson, G., Bangura Arvidsson, M., Rasmusson, B., & Trulsson, K. (2006)

Starting university is associated with major academic, personal and social opportunities. For many people, university entrance is also associated with increased stress and alcohol consumption. At the start of the autumn term 2002, all students entering educational programmes at two comparable middle-sized Swedish universities were invited to participate in a comparative intervention study. This included both primary and secondary interventions targeting hazardous drinking and stress. The overall aim was to improve alcohol habits and stress patterns in university freshmen at an intervention university in comparison with a control university.

A total of 2,032 (72%) freshmen responded to the baseline assessment. Half of them scored above traditional AUDIT cut-off levels for hazardous alcohol use. Factors associated with hazardous use were age below 26, male gender, family history of alcohol problems, and not being in a serious relationship. The Arnetz and Hasson Stress Questionnaire was evaluated and used to study a selection of freshmen at high riskof stress. It was easy to use and offered sufficient internal consistency and construct validity. In the freshman year, 517 students (25%) dropped out from university education. A multivariate analysis established that high stress and university setting was associated with dropout from university studies, while symptoms of depression and anxiety as well as hazardous drinking were not.

Outcome was analysed in students remaining at university at one-year follow-up. The primary interventions offered to freshmen at the intervention university reduced alcohol expectancies and mental symptoms compared with freshmen at the control university. Secondary stress interventions were effective in reducing mental symptoms and alcohol expectancies. Secondary alcohol interventions were effective in reducing AUDIT scores, alcohol expectancies, estimated blood alcohol concentrations, as well as stress and mental symptoms.

In conclusion, both primary and secondary alcohol and stress interventions have one-year effects in university freshmen and could be used in university settings.

Mitt annorlunda barn : när livet som förälder inte blir som man tänkt sig

Gomér, Ann (2018)

Ann Gomér berättar sin historia om hur livet förändrades för henne och hennes familj när andra dottern Frida föddes. Frida föddes med omfattande funktionsnedsättningar och läkarna kunde inte riktigt ge henne en diagnos. Många tankar och många svårigheter, men också glädjeämnen mitt i det svåra. Hur livet blir för andra dottern Fanny beskriver Ann, men Fanny själv berättar mer i ett efterord

Mod och mandat - Ny lagstiftning stärker barn som anhöriga. Har vi modet att möta dem?

Mårten Jansson, Anne-Marie Larsson, Cecilia Modig (2011)

Den 1 januari 2010 infördes en ny bestämmelse i hälso- och sjukvårdslagen som ger hälso- och sjukvårdens verksamheter och dess personal skyldighet att särskilt beakta barnets behov av information, råd och stöd när en förälder har en psykisk sjukdom, är allvarligt somatiskt sjuk eller missbrukar. Detsamma gäller när en förälder oväntat avlider. Den nya lagstiftningen stärker barns rätt och ställer krav på att ett familjeorienterat synsätt utvecklas inom verksamheter som möter vuxna patienter inom de ovan nämnda grupperna.

Stiftelsen Allmänna Barnhuset och Socialstyrelsen har 2008 -2010 drivit ett gemensamt projekt i syfte att skaffa kunskap om vilka åtgärder som behöver vidtas för att lagen ska få avsedd effekt. Denna bok är en rapport från det arbete och vi hoppas att den kan inspirera, stimulera och visa på möjliga vägar för lokalt och regionalt utvecklingsarbete i syfte att bättre uppmärksamma barn som anhöriga.

I boken framkommer också vilka svårigheter som finns och vikten av ett gemensamt ansvarstagande av de huvudmän som möter barn i dessa situationer.

Models for understanding adolescent coping with bereavement

Balk, D.E. (1996)

Several issues impinge on scholars and practitioners interested in adolescent bereavement. First and foremost, adolescent bereavement over the death of a family member or a friend is more prevalent than many persons recognize. Second, scholars and practitioners need models that link adolescent development with adolescent coping during bereavement. Third, models are needed (a) to assist in rethinking what "recovery from bereavement" denotes and (b) to afford criteria for assessing recovery from bereavement. The author reviews findings on bereavement during adolescent development and gives particular attention to three models that enhance our understanding of coping with the life crises bereavement presents to adolescents. One model links grief during adolescence to developmental tasks; another model presents adaptive tasks and coping skills; and the third model identifies sentiments essential for human wholeness. Findings from a variety of studies with bereaved adolescents provide data to test the usefulness of the models. The closing discussion centers on implications for working with bereaved adolescents.

Moderate versus severe early life stress: Associations with stress reactivity and regulation in 10-12-year-old children

Gunnar, M. R., Frenn, K., Wewerka, S. S., & Van Ryzin, M. J. (2009)

Early life stress (ELS) is expected to increase reactivity of the hypothalamic-pituitary-adrenocortical (HPA) axis; however, several recent studies have shown diminished cortisol reactivity among adults and children with ELS exposure. The goal of this study was to examine cortisol activity in 10-12-year-old internationally adopted children to determine if moderate and severe ELS have different impacts on the HPA axis. Salivary cortisol and two measures of autonomic activity were collected in response to the Trier Social Stress Test for Children (TSST-C). Three groups reflecting moderate, severe, and little ELS were studied: early adopted children who came predominantly from foster care overseas (early adopted/foster care (EA/FC), n=44), later adopted children cared for predominantly in orphanages overseas (late adopted/post-institutionalized (LA/PI), n=42) and non-adopted (NA) children reared continuously by their middle- to upper-income parents in the United States (n=38). Diminished cortisol activity was noted for the EA/FC group (moderate ELS), while the LA/PI group (severe ELS) did not differ from the NA group. Overall, few children showed cortisol elevations to the TSST-C in any group. The presence/absence of severe growth delay at adoption proved to be a critical predictive factor in cortisol activity. Regardless of growth delay, however, LA/PI children exhibited higher sympathetic tone than did NA children. These results suggest that moderate ELS is associated with diminished cortisol activity; however, marked individual differences in cortisol activity among the LA/PI children suggest that child factors modify the impact of severe ELS. Lack of effects of severe ELS even for growth delayed children may reflect the restorative effects of adoption or the generally low responsiveness of this age group to the TSST-C.

Morbidity and mortality among foreign-born Swedes

Albin, B. (2006)

Det svenska samhället har under senare delen av 1900-talet påverkats och förändrats på grund av en ökad internationell migration. År 1950 var 2,8 % av den svenska befolkningen utrikesfödd; idag utgör de utrikesfödda 12,0 % av totalbefolkningen. Om även andragenerationens migranter (de som har en eller båda föräldrar utrikesfödda) räknas med utgör första och andragenerationens migranter tillsammans 20 % av Sveriges befolkning. Tidigare studier har visat att migration kan påverka hälsa och hälsoutveckling på både positiva och negativa sätt. Ett accepterat sätt att mäta hälsa och hälsoutveckling är att studera morbiditet och mortalitet i en befolkning. Ett fåtal studier har återfunnits som har undersökt morbiditet och mortalitet bland migranter. Ingen av dessa har haft en longitudinell design och undersökt en total population av migranter i ett land. Det övergripande syftet var att beskriva och jämföra hälsa och hälsoutveckling över tid mellan svenskfödda och utrikesfödda och genom detta att studera migrationens påverkan på hälsa. De fyra i avhandlingen ingående delarbetena bygger på analys av data från Statistiska Centralbyrån och Socialstyrelsens Centrum för Epidemiologi. I databasen har ingått samtliga utrikesfödda, 16 eller äldre som fanns i Sverige 1970. Till varje utrikesfödd person finns en svensk kontroll matchad vad gäller kön, ålder, sysselsättning, yrke och bosättningslän. För 20 518 utrikesfödda personer kunde inte en kontroll skapas på grund av matchningskriterierna; dessutom exkluderades de personer som under den studerade tiden (1970?1999) hade emigrerat från Sverige. Totalt kom databasen som användes för analys att omfatta 723 948 personer, 50 % utrikesfödda och 50 % svenska kontroller. Den första delstudiens syfte var att beskriva och jämföra mortalitet mellan utrikesfödda och svenskfödda under perioden 1970?1999. Resultaten visade en generellt högre dödlighet bland utrikesfödda (OR 1,08) och en lägre medelålder vid tidpunkten för dödsfallet. Speciellt hög mortalitetsrisk återfanns bland män från Finland (OR 1,21), Danmark (OR 1,11) och Norge/Island (OR 1,07). Två ålderskohorter jämfördes, personer födda 1901?1920 respektive personer födda 1921?1944, och analysen visade en högre mortalitet för personer i den äldsta ålderskohorten. Personer som hade invandrat ?sent? till Sverige visade större skillnader i medelålder vid död än de som hade invandrat ?tidigt?; personer som kommit till Sverige under perioden 1941?1970 hade en 2,5 år lägre medelålder vid tiden för dödsfallet. Syftet för den andra delstudien var beskriva, jämföra och analysera dödsorsaksmönster bland utrikesfödda och svenskfödda under perioden 1970?1999. Studiens resultat visade ett större antal avlidna i sex olika ICD-huvuddiagnosgrupper och en lägre medelålder vid tiden för dödsfallet bland utrikesfödda. Födelselandet hade betydelse för dödsorsaksmönstret. Vid jämförelse med de svenska kontrollerna återfanns bland migranter från Danmark ett större antal avlidna i diagnosgruppen ?Neoplasm?, bland migranter från Finland och Polen var skillnaden stor i gruppen ?Diseases of the circulatory system? och personer från tidigare Jugoslavien särskilde sig mot kontrollerna framför allt med ett större antal avlidna i gruppen ?Symptoms, signs and ill-defined conditions?. Över tid fanns en tendens till en utjämning av skillnaderna i diagnosmönstret mellan utrikesfödda och svenskfödda. Då de två tidigare studierna hade visat på skillnader i mortalitet och morbiditet mellan utrikesfödda och svenskfödda kom den tredje studien att som syfte ha att beskriva, jämföra och analysera konsumtion av hälso- och sjukvård i fyra olika ICD-diagnosgrupper. Som mått på sjukvårdskonsumtion användes antal inläggningar på sjukhus, totalt antal vårddagar och vårddagar under de två sista inläggningstillfällena på sjukhus bland avlidna utrikesfödda och svenskfödda 1987?1999. Resultatet visade en tendens till mindre sjukvårdskonsumtion bland utrikesfödda, särskild vad gäller utrikesfödda män. Mindre sjukvårdskonsumtion för utrikesfödda återfanns i två av de fyra använda diagnosgrupperna (?Symptoms, signs and ill-defined conditions? och ?Injury and poisoning ?). Att vara utrikesfödd, justerat för ålder, var en oberoende bestämmande faktor för inläggning på sjukhus. Den nollhypotes som formulerats vid studiens start, att skillnader mellan utrikesfödda och svenskfödda beträffande sjukvårdkonsumtion inte fanns, kunde tillbakavisas. Det sista delarbetets syfte var att beskriva och jämföra skillnader i mortalitet i olika landsting mellan utrikesfödda och svenskfödda med en formulerad nollhypotes att inga mortalitetsskillnader fanns mellan olika landsting. Studiens resultat kunde tillbakavisa nollhypotesen, det fanns skillnader i mortalitet mellan utrikesfödda och svenskfödda framför allt i de län som kunde karaktäriseras som mera ?landsbygds?-dominerade. Landsbygdsdominerade län hade också gemensamt att deras populationer av migranter var förhållandevis små. Medelåldern vid tiden för avlidande var för män mellan 1,0?4,3 år lägre för utrikesfödda personer. Resultaten av de i avhandlingen ingående fyra olika studierna visar högre dödlighet, annorlunda sjukdomsmönster och tendens till lägre konsumtion av vård bland utrikesfödda än bland svenskfödda personer under perioden 1970?1999. Flera faktorer, såsom ekonomisk situation, arbete, arbetsmiljö, arbetslöshet, sociala nätverk och situationen före migrationen kan ha påverkat de utrikesföddas sämre hälsoläge. Den fysiska och sociala miljön och eventuella ojämlikheter i sjukvårdsresurser och tillgång till vård spelar också en viktig roll. Migrationen har haft en negativ inverkan på de utrikesföddas hälsa och är en viktig faktor att ta hänsyn till vid studier av hälsa och hälsoutveckling bland befolkningen i ett land

More Caregiving, Less Working: Caregiving Roles and Gender Difference

Lee, Y. and F. Tang (2013)

This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments.

Mortality after parental death in childhood: a nationwide cohort study from three nordic countries

Li, J., Vestergaard, M., Cnattingius, S., Gissler, M., Bech, B., Obel, C., & Olsen, J. (2014)

Abstract

Background

Bereavement by spousal death and child death in adulthood has been shown to lead to an increased risk of mortality. Maternal death in infancy or parental death in early childhood may have an impact on mortality but evidence has been limited to short-term or selected causes of death. Little is known about long-term or cause-specific mortality after parental death in childhood.

Methods and Findings

This cohort study included all persons born in Denmark from 1968 to 2008 (n = 2,789,807) and in Sweden from 1973 to 2006 (n = 3,380,301), and a random sample of 89.3% of all born in Finland from 1987 to 2007 (n = 1,131,905). A total of 189,094 persons were included in the exposed cohort when they lost a parent before 18 years old. Log-linear Poisson regression was used to estimate mortality rate ratio (MRR). Parental death was associated with a 50% increased all-cause mortality (MRR = 1.50, 95% CI 1.43–1.58). The risks were increased for most specific cause groups and the highest MRRs were observed when the cause of child death and the cause of parental death were in the same category. Parental unnatural death was associated with a higher mortality risk (MRR = 1.84, 95% CI 1.71–2.00) than parental natural death (MRR = 1.33, 95% CI 1.24–1.41). The magnitude of the associations varied according to type of death and age at bereavement over different follow-up periods. The main limitation of the study is the lack of data on post-bereavement information on the quality of the parent-child relationship, lifestyles, and common physical environment.

Conclusions

Parental death in childhood or adolescence is associated with increased all-cause mortality into early adulthood. Since an increased mortality reflects both genetic susceptibility and long-term impacts of parental death on health and social well-being, our findings have implications in clinical responses and public health strategies.

Mortality after the death of a parent in adulthood: a register-based comparison of two ethno-linguistic groups

Saarela, Jan; Rostila, Mikael (2019)

Abstract:
Background Most research on parental bereavement and health have analysed health consequences of parental loss in childhood, while collateral health in adulthood has been less studied. Methods Using register-based population data from Finland, we analyse adult offspring aged 18–50 years with discrete-time hazard models that adjust for offspring and parental socioeconomic and demographic characteristics. In focus are adult children whose parents were alive and lived together at the beginning of the observation period. We compare two culturally distinct but otherwise similar ethno-linguistic groups, Finnish speakers and Swedish speakers. Results The results suggest that bereaved men have an approximately 30% higher death risk than non-bereaved men, while there is practically no difference in women. Associations between parental and child deaths are, as expected, stronger for concordant causes of death than for discordant causes of death. However, some associations for discordant causes of death remain, which may indicate causality. Among Swedish speakers, who have notably higher family stability than Finnish speakers, the death of one or both parents shows a stronger association with own mortality. Conclusions The estimated associations found are generally larger than in the neighbouring country Sweden, which may be due to a stronger obedience to traditional family values and patriarchal family roles in Finland. These findings suggest that the association between parental death and mortality in adult offspring may depend on the societal context as well as on cultural practices. These factors should be increasingly acknowledged in future studies on collateral health.

Mortality in parents after the death of a child in Denmark: a nationwide follow-up study

Li, J., Precht D. H., Mortensen P. B., & Olsen J. (2003)

Abstract
BACKGROUND:
Little is known about the effect of parental bereavement on physical health. We investigated whether the death of a child increased mortality in parents.
METHODS:
We undertook a follow-up study based on national registers. From 1980 to 1996, we enrolled 21062 parents in Denmark who had a child who had died (exposed cohort), and 293745 controls--ie, parents whose children were alive, and whose family structure matched that of the exposed cohort. Natural deaths were defined with ICD8 codes 0000-7969 and ICD10 codes A00-R99, and unnatural deaths with codes 8000-9999 and V01-Y98. We used Cox's proportional-hazards regression models to assess the mortality rate of parents up to 18 years after bereavement.
FINDINGS:
We observed an increased overall mortality rate in mothers whose child had died (hazards ratio 1.43, 95% CI 1.24-1.64; p<0.0001). An excess mortality from natural causes (1.44, 1.15-1.78; p<0.0001) was noted in mothers only during the 10th-18th year of follow-up. Mothers had increased mortality rates from unnatural causes throughout follow-up, with the highest rate recorded during the first 3 years (3.84, 2.48-5.88; p<0.0001). Bereaved fathers had only an early excess mortality from unnatural causes (1.57, 1.06-2.32; p=0.04). Mothers who lost a child due to an unnatural death or an unexpected death had a hazard ratio of 1.72 (1.38-2.15; p=0.0040) and 1.67 (1.37-2.03; p=0.0037), respectively.
INTERPRETATION:
The death of a child is associated with an overall increased mortality from both natural and unnatural causes in mothers, and an early increased mortality from unnatural causes in fathers.

Mortality, severe morbidity an injury in children living with single parents in Sweden: a population-based study

Ringbäck-Weitoft, G, Hjern, A, Haglund, B & Rosén, M (2003)

Abstract
BACKGROUND:
Growing up with one parent has become increasingly common, and seems to entail disadvantages in terms of socioeconomic circumstances and health. We aimed to investigate differences in mortality, severe morbidity, and injury between children living in households with one adult and those living in households with two adults.
METHODS:
In this population-based study, we assessed overall and cause-specific mortality between 1991 and 1998 and risk of admission between 1991 and 1999 for 65085 children with single parents and 921257 children with two parents. We estimated relative risks by Poisson regression, adjusted for factors that might be presumed to select people into single parenthood, and for other factors, mainly resulting from single parenthood, that might have affected the relation between type of parenting and risk.
FINDINGS:
Children with single parents showed increased risks of psychiatric disease, suicide or suicide attempt, injury, and addiction. After adjustment for confounding factors, such as socioeconomic status and parents' addiction or mental disease, children in single-parent households had increased risks compared with those in two-parent households for psychiatric disease in childhood (relative risk for girls 2.1 [95% CI 1.9-2.3] and boys 2.5 [2.3-2.8]), suicide attempt (girls 2.0 [1.9-2.2], boys 2.3 [2.1-2.6]), alcohol-related disease (girls 2.4 [2.2-2.7], boys 2.2 [2.0-2.4]), and narcotics-related disease (girls 3.2 [2.7-3.7], boys 4.0 [3.5-4.5]). Boys in single-parent families were more likely to develop psychiatric disease and narcotics-related disease than were girls, and they also had a raised risk of all-cause mortality.
CONCLUSIONS:
Growing up in a single-parent family has disadvantages to the health of the child. Lack of household resources plays a major part in increased risks. However, even when a wide range of demographic and socioeconomic circumstances are included in multivariate models, children of single parents still have increased risks of mortality, severe morbidity, and injury.

Mortality, severe morbidity, and injury in children living with single parents in Sweden: a population- based study

Ringbäck-Weitoft, G. Hjern A Haglund, B. Rosén, M (2003)

Background
Growing up with one parent has become increasingly common, and seems to entail disadvantages in terms of socioeconomic circumstances and health. We aimed to investigate differences in mortality, severe morbidity, and injury between children living in households with one adult and those living in households with two adults.

Methods
In this population-based study, we assessed overall and cause-specific mortality between 1991 and 1998 and risk of admission between 1991 and 1999 for 65 085 children with single parents and 921 257 children with two parents. We estimated relative risks by Poisson regression, adjusted for factors that might be presumed to select people into single parenthood, and for other factors, mainly resulting from single parenthood, that might have affected the relation between type of parenting and risk.

Findings
Children with single parents showed increased risks of psychiatric disease, suicide or suicide attempt, injury, and addiction. After adjustment for confounding factors, such as socioeconomic status and parents' addiction or mental disease, children in single-parent households had increased risks compared with those in two-parent households for psychiatric disease in childhood (relative risk for girls 2·1 [95% CI 1·9–2·3] and boys 2·5 [2·3–2·8]), suicide attempt (girls 2·0 [1·9–2·2], boys 2·3 [2·1–2·6]), alcohol-related disease (girls 2·4 [2·2–2·7], boys 2·2 [2·0–2·4]), and narcotics-related disease (girls 3·2 [2·7–3·7], boys 4·0 [3·5–4·5]). Boys in single-parent families were more likely to develop psychiatric disease and narcotics-related disease than were girls, and they also had a raised risk of all-cause mortality.

Conclusions
Growing up in a single-parent family has disadvantages to the health of the child. Lack of household resources plays a major part in increased risks. However, even when a wide range of demographic and socioeconomic circumstances are included in multivariate models, children of single parents still have increased risks of mortality, severe morbidity, and injury.

Mot alla odds. Barn till narkotikamissbrukare berättar om sin uppväxt

Claezon, I. (1996)

Boken handlar om tjugo unga människors uppväxtvillkor. Gemensamt för dem är att en eller båda föräldrarna varit tunga narkotikamissbrukare under deras uppväxt. Gemensamt för dem är också att de flesta upplevt ett antal separationer från föräldrar eller andra viktiga vuxna. Det är också uppenbart att de flesta av dem trots denna bakgrund har en positiv syn på livet och framtiden. Den övergripande frågan som ställs i boken är hur man kan lyckas i livet - mot alla odds.

I boken som bygger på djupintervjuer med de unga personerna, diskuteras de faktorer som kan vara avgörande för barns återhämtningsförmåga eller motståndskraft. Det här är ett till stor del outforskat område (forskningen har hittills varit inriktad på brist- eller riskfaktorer) och kan hjälpa dem som arbetar inom vård- och behandling att hitta nya metoder och förhållningssätt i arbetet med barn i missbruksfamiljer.

Mother and child interactions about the mother's breast cancer: an interview study

Shands ME, Lewis FM, Zahlis EH. (2000)

PURPOSE/OBJECTIVES: To describe mothers' reported methods of interacting with the mothers' school-age children about their breast cancer. DESIGN: Qualitative. SETTING/SAMPLE: 19 mothers newly diagnosed with breast cancer. Mothers received treatment for their illness in the Pacific Northwest. Mothers had at least one child between 7 and 12 years old at the time of diagnosis. METHODS: Case-intensive, in-home, semistructured interviews were audiotaped, transcribed, and inductively coded into four conceptual domains and 16 categories of behavioral strategies used by the mothers to interact with their children about the breast cancer. MAIN RESEARCH VARIABLES: Behavioral strategies used by mothers when interacting with the children about the breast cancer and when providing children with support. FINDINGS: Mothers used a number of methods to bring children into the mothers' breast cancer experience. The conceptual domains included talking about the breast cancer, explaining treatment and care, providing experiences, and doing things to help children cope. CONCLUSIONS: The dominant pattern in the interview data was for mothers to assume a teacher/educator role with the children about the cancer, not an interactive, emotive-expressive parenting role. Most mothers used technical biomedical language; did not give evidence of systematically checking on the children's understanding of what they were told; did not elicit the children's concerns; and exposed the children to emotionally laden or potentially frightening images, words, or experiences. IMPLICATIONS FOR NURSING PRACTICE: Programs and materials need to be developed that help mothers work from a model of parenting that includes developmentally appropriate language, facilitates the children's expression of questions and feelings, links the mothers with the children's understanding of the illness, and assists the children to better manage what is happening related to the breast cancer.

Mother´s stories of the school-age child´s experience with the mother´s breast cancer

Zahlis, E. H. and F. M. Lewis (1998)

Semistructured interviews were conducted with 26 mothers who had one or more children(N = 36) aged 8 to 12 years when they were diagnosed with early stage breast cancer. Formal methods were used to analyze the content of the data inductively. Mothers identified times during their diagnosis and treatment that were most difficult for their children, behaviors they observed indicating that the child was having a difficult time, and factors that prevented them from helping the child during those difficult times. The data provide a partial basis for developing materials, programs, and services designed to minimize the children's distress and to enhance the effectiveness of' parenting when a mother has early stage breast cancer.

Mothers with learning difficulties and their support networks

Llewellyn, Gwynnyth & McConnel, David (2002)

Mothers with learning difficulties1 are thought to be among the most socially isolated parents in the community. A great deal of attention has been directed to assessing their parenting abilities and teaching parenting skills, but less has been given to the support that mothers may (or may not) receive from family, friends and the service system. The present paper investigates mothers' views about the types of support which they receive and from whom they receive it. Data were derived from 70 mothers who participated in interviews using a support interview guide designed to accommodate the mothers' cognitive difficulties. The primary purpose of the interview was to explore the quantity and composition of the mothers' support networks, the frequency of contact and geographical proximity of support people, and the type of support provided. Key findings include: the central place that family members have in these mothers' lives; the importance of service providers as sources of information and advice; and the relative absence of friends and neighbours. Briefly, mothers living alone have service-centred networks, mothers living with a partner have family-centred networks with relatively dispersed family ties, and mothers living in a parent/parent-figure household have local, family-centred networks. The overall conclusion to be drawn from the present results is that these mothers do not live in a social vacuum, but many are socially isolated. The finding that so few mothers could identify supportive ties with friends and neighbours suggests that these mothers are isolated from their local communities and are potentially vulnerable if a breakdown occurs in the support provided by their families. The need for service providers to be more actively involved in linking mothers to their communities is discussed.

Motivational interviewing: Preparing People to Change

Miller, William & Rollnick, Stephen (2002)

Since the initial publication of this breakthrough work, Motivational Interviewing (MI) has been used by countless clinicians. Theory and methods have evolved apace, reflecting new knowledge on the process of behavior change, a growing body of outcome research, and the development of new applications within and beyond the addictions field. Extensively rewritten, this revised and expanded second edition now brings MI practitioners and trainees fully up to date. William R. Miller and Stephen Rollnick explain how to work through ambivalence to facilitate change, present detailed guidelines for using their approach, and reflect on the process of learning MI. Chapters contributed by other leading experts then address such special topics as MI and the stages-of-change model, applications in medical, public health, and criminal justice settings, and using the approach with groups, couples, and adolescents.

Parent stress management training for attention-deficit/hyperactivity disorder

Treacy L, Tripp G, Baird A. (2005)

This study assessed the effectiveness of a targeted 9-week parent stress management program (PSM) on the parenting stress, mood, family functioning, parenting style, locus of control, and perceived social support of parents of children diagnosed with DSM-IV ADHD. Sixty-three parents from 42 families were randomly assigned to 1 of 2 conditions: immediate treatment or wait-list control. Results of the randomized control trial showed that for mothers, completion of the PSM program was accompanied by significant reductions in parent-domain parenting stress together with significant improvements in parenting style (verbosity, laxness, overreactivity). For fathers, completion of the program was associated with a reduction in verbosity only. Anonymously completed consumer satisfaction questionnaires demonstrated a high degree of satisfaction with the PSM program.

Parent training plus contingency management for substance abusing families: A Complier Average Causal Effects (CACE) analysis

Stanger C, Ryan SR, Fu H, Budney AJ. (2011)

BACKGROUND:
Children of substance abusers are at risk for behavioral/emotional problems. To improve outcomes for these children, we developed and tested an intervention that integrated a novel contingency management (CM) program designed to enhance compliance with an empirically-validated parent training curriculum. CM provided incentives for daily monitoring of parenting and child behavior, completion of home practice assignments, and session attendance.
METHODS:
Forty-seven mothers with substance abuse or dependence were randomly assigned to parent training+incentives (PTI) or parent training without incentives (PT). Children were 55% male, ages 2-7 years.
RESULTS:
Homework completion and session attendance did not differ between PTI and PT mothers, but PTI mothers had higher rates of daily monitoring. PTI children had larger reductions in child externalizing problems in all models. Complier Average Causal Effects (CACE) analyses showed additional significant effects of PTI on child internalizing problems, parent problems and parenting. These effects were not significant in standard Intent-to-Treat analyses.
CONCLUSION:
Results suggest our incentive program may offer a method for boosting outcomes.

Parent training plus contingency management for substance abusing families: A Complier Average Causal Effects (CACE) analysis

Stanger C, Ryan SR, Fu H, Budney AJ. (2011)

BACKGROUND:
Children of substance abusers are at risk for behavioral/emotional problems. To improve outcomes for these children, we developed and tested an intervention that integrated a novel contingency management (CM) program designed to enhance compliance with an empirically-validated parent training curriculum. CM provided incentives for daily monitoring of parenting and child behavior, completion of home practice assignments, and session attendance.
METHODS:
Forty-seven mothers with substance abuse or dependence were randomly assigned to parent training+incentives (PTI) or parent training without incentives (PT). Children were 55% male, ages 2-7 years.
RESULTS:
Homework completion and session attendance did not differ between PTI and PT mothers, but PTI mothers had higher rates of daily monitoring. PTI children had larger reductions in child externalizing problems in all models. Complier Average Causal Effects (CACE) analyses showed additional significant effects of PTI on child internalizing problems, parent problems and parenting. These effects were not significant in standard Intent-to-Treat analyses.
CONCLUSION:
Results suggest our incentive program may offer a method for boosting outcomes.

Parent training with behavioral couples therapy for fathers' alcohol abuse: effects on substance use, parental relationship, parenting, and CPS involvement

Lam WKK, Fals-Stewart W, Kelley ML. (2009)

This pilot study examined effects of Parent Skills with Behavioral Couples Therapy (PSBCT) on substance use, parenting, and relationship conflict among fathers with alcohol use disorders. Male participants (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child (8 to 12 years) were randomly assigned to (a) PSBCT; (b) Behavioral Couples Therapy (BCT); or (c) Individual-Based Treatment (IBT). Children were not actively involved in treatment. Parents completed measures of substance use, couples' dyadic adjustment, partner violence, parenting, and Child Protection Services (CPS) involvement at pretreatment, posttreatment, 6- and 12-month follow-up. PSBCT was comparable to BCT on substance use, dyadic adjustment, and partner violence; both groups showed clinically meaningful effects over IBT. Compared to BCT, PSBCT resulted in larger effect sizes on parenting and CPS involvement throughout follow-up. PSBCT for fathers may enhance parenting couple- or individual-based treatment, and warrant examination in a larger, randomized efficacy trial.

Parent training with behavioral couples therapy for fathers' alcohol abuse: effects on substance use, parental relationship, parenting, and CPS involvement.

Lam WKK, Fals-Stewart W, Kelley ML. (2009)

This pilot study examined effects of Parent Skills with Behavioral Couples Therapy (PSBCT) on substance use, parenting, and relationship conflict among fathers with alcohol use disorders. Male participants (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child (8 to 12 years) were randomly assigned to (a) PSBCT; (b) Behavioral Couples Therapy (BCT); or (c) Individual-Based Treatment (IBT). Children were not actively involved in treatment. Parents completed measures of substance use, couples' dyadic adjustment, partner violence, parenting, and Child Protection Services (CPS) involvement at pretreatment, posttreatment, 6- and 12-month follow-up. PSBCT was comparable to BCT on substance use, dyadic adjustment, and partner violence; both groups showed clinically meaningful effects over IBT. Compared to BCT, PSBCT resulted in larger effect sizes on parenting and CPS involvement throughout follow-up. PSBCT for fathers may enhance parenting couple- or individual-based treatment, and warrant examination in a larger, randomized efficacy trial.

Parent versus child stress in diverse family types: An ecological approach

Duis SS, Summers M, Summers CR. (1997)

Differences in level of overall stress and the proportion o f child- versus
parent-related stress among several different family types were investigated.
An ecological framework was used to delineate the predictors o f
stress for the different family types. Participants were 2 9 single-parent
families, 3 5 two-parent families, 1 7 families o f children with Down syndrome,
1 6 families of children with hearing impairment, and 2 9 families
of children with developmental delay. Th e results indicate that family
stress and ecological variables predictive o f family stress varied among
these families. Intervention and therapy efforts may be improved by
understanding the locus o f stressors among these family types.

Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most?

van den Heuvel ET, Witte LP, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B. (2002)

In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers' active coping and knowledge, reducing caregivers' strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.

Loss and grief in patients with Schizophrenia: Onliving in another world

Mauritz M, Van Meijel B. (2009)

AIM:
Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia.
METHOD:
A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping.
RESULTS:
All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning.
DISCUSSION:
Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded.
CLINICAL IMPLICATIONS:
Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.

Manual for the ASEBA Preschool Forms and Profiles

Achenbach TM, Rescorla LA. (2000)

The Manual for the ASEBA preschool forms & profiles explains the development, standardization, applications, & profiles for the CBCL//l½-5 and C-TRF. The Manual also provides reliability & validity data, case illustrations, problem prevalence rates, scale scores, scoring instructions, & answers to common questions. 180 pp.

Mapping images to objects by young adults with cognitive disabilities

Carmien, S. & Wohldman E. (2008)

How the type of representation (icons, photos of objects in context, photos of objects in isolation) displayed on a hand-held computer affected recognition performance in young adults with cognitive disabilities was examined. Participants were required to match an object displayed on the computer to one of three pictures projected onto a screen. We tested the opinion widely held by occupational therapists and special education professionals that there is an inverse relationship between cognitive ability and the required fidelity of a representation for a successful match between a representation and an external object. Despite their widespread use in most learning tools developed for persons with cognitive disabilities, our results suggest that icons are poor substitutes for realistic representations.

Marketisation in Nordic eldercare: a research report on legislation, oversight, extent and consequences.

Meagher G, Szebehely M, editors (2013)

The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.

'Mastering an unpredictable everyday life after stroke'--older women's experiences of caring and living with their partners.

Gosman-Hedstrom G, Dahlin-Ivanoff S. (2012)


INTRODUCTION:
The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.
AIM:
To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.
METHOD:
The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours.
FINDINGS:
The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.
CONCLUSION:
This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.
2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

Med rätt att bestämma själv? – ”exit”, ”voice” och personlig assistans

Hugemark, Agneta (2004)

This study focuses on the influence a user may have over his or her welfare service, personal assistance.
A county, an assistance firm and a user cooperative are compared with the thesis that the organisation
that surrounds the users shapes the possibilities the user have to influence his or her personal
assistance. There are questions that try to answer if there are outspoken social goals within each
organisation. Questions regarding influence of the user when she och he is choosing the assistans
provider and the users possibility to influence and his or her power to decide who and when anyone
works as an assistant are asked.

Mediation of the effects of the Family Bereavement Program on mental health problems of bereaved children and adolescents

Tein, J., Sandler, I.N., Ayers, T.S., & Wolchik, S.A. (2006)

This study presents an analysis of mediation of the effects of the Family Bereavement Program (FBP) to improve mental health outcomes of girls at 11 months following program participation. The FBP was designed based on a theory that program-induced change in multiple child and family level mediators would lead to reductions in children's mental health problems. Mediational models were tested using a three wave and a two wave longitudinal design. Using a three wave longitudinal design, FBP effects on three variables at T2 (increased positive parenting, decreased negative events, and decreased inhibition of emotional expression) were found to mediate the effects of the FBP on mental health problems at 11-month follow-up. Using a two-wave longitudinal design, support was found for FBP effects on three additional variables at 11-month follow-up (increased positive coping, decreased negative thoughts about stressors, and decreased unknown control beliefs) to mediate program effects to reduce mental health problems at 11-month follow-up. The discussion focuses on theoretical explanations for the mediational effects and on implications for identifying "core components" of the FBP that are responsible for its effects to reduce mental health problems of girls.

Min syster fick Alzheimer – om vård och bemötande ur ett anhörigperspektiv

Andersson, Irene (2011)

Moniqa Andersson är bara 58 år då hon får diagnosen Alzheimers sjukdom. I boken Min syster fick Alzheimer - om vård och bemötande ur ett anhörigperspektiv beskriver hennes syster, bokens författare, hur hon går bredvid genom sjukdomsförloppet och kämpar för att Moniqa ska få en trygg och fungerande vård på ett demensboende. Min syster fick Alzheimer är inte bara en engagerad och personlig skildring av hur en demenssjukdom utvecklas och hur de närstående drabbas, den ger också en värdefull inblick i hur vårdsystemet fungerar. Iréne Andersson reflekterar träffsäkert över bemötandet inom den kommunala demensvården och psykiatrin samt ger ett antal konkreta råd om vad som skulle kunna förbättras. Hon problematiserar vidare begreppen "anhörig" och "anhörigsjukdom" samt tar upp frågor om identitet, etik och ansvar. Här kommer många anhöriga och närstående att känna igen sig och få stöd. Författarens iakttagelser gör också boken särskilt intressant för personal i kommun och landsting. Iréne Andersson arbetar som lektor vid Malmö högskola med utbildningsvetenskap samt forskar om genus och fredshistoria. Hon är även flitigt anlitad av Alzheimerföreningen som föreläsare.

Motivation for Money and Care that Adult Children Provide for Parents: Evidence from “Point-Blank” Survey Questions. Working Paper 2004-17

Cox, D. and B. Soldo (2004)

When adult children provide care for their aging parents, they often do so at great expense to themselves incurring psychic, monetary, emotional, and even physical costs, in conjunction with care that is labor intensive and, at the extreme, unrelenting. While the nature of parent care and the profile of care giving children are well described in the literatures of the social sciences, we still lack insight into why adult children undertake parent care without compensation or compulsion. In this paper, we adopt a novel, direct question approach using newly available data from a special module fielded in the 2000 Health and Retirement Study that included questions on motivations for, and concerns with, the provision of familial assistance. Transfers are not always provided free of pressure from other family members, for example, and familial norms of obligations and traditions appear to matter for many respondents. These findings suggest that the standard set of economic considerations—utility interdependence, budget constraints, exchange, and the like—are insufficient for a complete understanding of private transfer behavior. Though one must always be skeptical about reading too much into what people say about why they do the things they do (or think they will do) we nonetheless conclude that "point-blank" questions offer, at the very least, a worthwhile complement to the more conventional methods for unraveling motivations for private, intergenerational transfers.

Mönster i anhörigomsorgen: En uppföljning i Mullsjö 2010

Malmberg, B. and G. Sundström (2012)

Institutet för gerontologi (IFG) genomförde 2008 en enkätundersökning bland alla Mullsjöbor som var 55 år och äldre, varav närmare 70 procent svarade eller drygt 1 600 personer. En dryg femtedel gav omsorg i någon form till närstående personer och omsorgsmönstren svarade väl med resultat i andra undersökningar. En mindre del gav "tung" omsorg, oftast till en partner. Fler gav mindre omfattande omsorg till föräldrar eller andra närstående, men det var också vanligt med "lätt" hjälp till grannar m.fl. (Socialstyrelsen 2009).

År 2010 genomfördes en uppföljningsundersökning av IFG med 911 av dessa personer: Nu var 14 procent omsorgsgivare, varav två tredjedelar var samma personer som 2008. Rörligheten var således betydande: Många hade slutat att ge omsorg – eller såg inte längre det de gjorde som omsorg - och ganska många hade börjat göra det. Även 2010 gjorde de flesta relativt "små" insatser, och ganska få av de "lätta" åtagandena 2008 hade blivit "tunga" 2010. Givare av anhörigomsorg delar fortfarande ofta omsorgsansvaret med någon annan anhörig.

I växande utsträckning delas ansvaret också med den kommunala omsorgen: 2010 hade 77 procent av mottagarna av anhörigomsorgen även någon form av kommunal omsorg (40 procent hade hemtjänst), som de anhöriga ganska ofta är nöjda med. Allt fler nås av hemtjänst, färdtjänst, trygghetslarm och/eller annan offentlig omsorg.

 

Negotiating family responsibilities

Finch, J. and J. Mason (1993)

Negotiating Family Responsibilitiesprovides a major new insight into contemporary family life, particularly kin relationships outside the nuclear family. While many people believe that the real meaning of 'family' has shrunk to the nuclear family household, there is considerable evidence to suggest that relationships with the wider kin group remain an important part of most people's lives.
Based on the findings of a major study of kinship, and including lively verbatim accounts of conversations with family members concepts of responsibility and obligation within family life are examined and the authors expand theories on the nature of assistance within families and argue that it is negotiated over time rather than given automatically.

Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.

Sowers KM, Ellis RA, Washington TA, Currant M. (2002)

Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.

Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.

Sowers KM, Ellis RA, Washington TA, Currant M. (2002)

Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.

Parent management of attendance and adherence in child and adolescent therapy: A conceptual and empirical review

Nock, M. K., & Ferriter, C. (2005)

There have been impressive, recent advances in the development of efficacious treatments for child and adolescent behavior problems. However, specific methods for delivering these treatments in a way that amplifies their efficacy have not been well articulated. Although many factors may be involved, attendance and adherence to treatment are arguably the most basic necessities for effective treatment delivery. We provide a conceptual and empirical review of past research on attendance and adherence to child and adolescent therapy, with a special focus on the importance of parents/guardians in managing treatment participation. Our review demonstrates that attendance and adherence are associated with a range of significant methodological, clinical, and financial outcomes. Several pretreatment predictors of attendance and adherence have been identified; however, to date only 12 controlled, clinical trials have evaluated strategies for enhancing attendance and adherence to child therapy. We conclude with an agenda for advancing research on the prediction and enhancement of attendance and adherence to child therapy as a means of improving the efficiency and effectiveness of child treatments.

Parentally bereaved children and posttraumatic growth: insights from an etnographic study of a UK childhood bereavement service

Brewer, J. & Sparkes, A. (2011)

Drawing on data generated from a two-year ethnographic study of the Rocky Centre (achildhood bereavement organisation in the UK), this article explores the positive changes and themes of posttraumatic growth experienced by parentally bereaved young people. Although the broader study generated data from participant observation, interviews and a documentary analysis, this article focuses specifically on the interviews with 13 young people to identify the themes of posttraumatic growth that emerged from the participants' narratives. Of these, four had been recently bereaved and nine had experienced the death of a parent over 10 years ago. Interviews were transcribed verbatim and analysed for themes that reflected the young people's experiences of growing through grief. Those identified were as follows: positive outlook, gratitude, appreciation of life, living life to the full, and altruism. Each theme isdiscussed in turn, and the implications of the findings for research and practice are addressed.

Women in the Middle. Their Parent-care Years

Brody, E. (2004)

Women in the Middlewas so-named because daughters, who are the main caregivers to elderly disabled parents, most often in their middle years, are caught in the middle of multiple competing demands on their time and energy. Since the first edition, women's responsibilities and the pressures they have experienced have increased and intensified. Dr. Brody revisits this phenomenon in this new, updated edition of her ground-breaking work.

Women in the Middle, 2/e, describes and discusses the caregiving women's subjective feelings, experiences, and problems, and the effects on their mental and physical well-being, life styles, family relationships, and vocational activities. These case studies and narratives present an insider's view of the harsh and sometimes joyful experience of caregiving.

Special attention is given to the changing face of social, economic, and environmental conditions, as well as the diversity of the caregiver, in which caregiving, in which caregiving takes place.

Workforce capacity to respond to children whose parents have a mental illness

Maybery, D., & Reupert , A. (2006)

Abstract
OBJECTIVE:
The first of the three objectives of this study was to identify the core barriers that impede adult mental health and other clinicians from working with patients about parenting and child-related issues. The second and third objectives were to rate the importance of these barriers and to compare barriers for adult mental health workers with other workers.
METHOD:
There were two data collection phases; the first, qualitative phase involved collecting verbatim responses from 60 mental health and welfare workers, regarding barriers about working with mentally ill patients about their parenting role as well as with their children. The second involved 32 participants, including 20 adult mental health workers and 12 other workers, responding to the scaled questionnaire items based on the qualitative barriers identified at phase one.
RESULTS:
The most important barriers highlighted by workers were patients not identifying their illness as a problem for their children and patients denying that they had a mental health problem. All workers reported that it was part of their role to get involved with issues regarding their patient's children. In comparison to other workers, adult mental health workers reported time and resource limitations, as well as skill and knowledge deficits regarding parenting and working with children.
CONCLUSIONS:
The findings are discussed in relation to adult mental health policy and ongoing professional development, particularly for adult mental health workers.

Young carers and their Families

Becker, S., Aldridge, J., & Dearden, C. (1998)

TONY WATERSTON, Consultant Paediatrician (Community Child Health)
Young Carers and their Families. By Becker S, Aldridge J, Dearden C. (Pp 144; paperback £14.99.) Blackwell Science, 1998. ISBN 0 632 04966 9 .

A day in the life of a child caring for a parent with multiple sclerosis.

Children caring for their parents or other children in the family are familiar to those who have worked in the third world but even with the UK's welfare service and safety net there are between 15 and 40 000 child carers nationwide. Oddly, just before starting to read this book I attended a meeting at a local school where we have begun a system of multiagency review of pupils not in school; the first young person discussed was caring for a parent and grandparent. We need to be more aware of this problem—hence this academic overview is welcomed.

Written by a trio of sociologists the book comes from a community and family based perspective but there is much of value to paediatricians. The authors first describe three perspectives on child carers: the impact of disability on the family, which is mainly medical; the children's rights angle; and the view of the disability rights movement. The first is viewed rather negatively as being narrow, but to me portrays the emotional and educational impact on the child of being a carer: "Every child needs to grow up in a stable environment characterised by consistent relationships. Many children are instead subjected to unending crises stemming from a parent's illness and repeated hospitalisation which provoke chronic uncertainty and unresolved grief that can be more stressful to a child than the loss of a parent through divorce or death." Thus the role of carer can restrict the child's education, can create physical burdens that their bodies are unprepared for, and confront them with a picture of suffering that has long term harm.

The children as carers literature tells why children take on care giving roles: a major factor is lone parenthood, another is reluctance of their father to take on caring activity; sadly the failure of services to recognise the needs of children and indeed sometimes to withdraw their provision is a notable factor. Inevitably, poverty is an ever present contributor. We learn of the involvement of young carers in intimate tasks; one girl cared for her father from the age of 9 following a stroke: "I did stop showering him at about 14 or 15, but recently that's started again. I didn't like showering him any more. You know, I thought 'I want my privacy, I'm sure he wants his', and I'm sure he doesn't like me having to shower him and I certainly don't like doing it. I suppose it was embarrassment. You know—it takes up so much time, it takes about an hour from start to finish, you know, get him in the shower and get him out and dressed."

Children carers have little power or status and families assume that what has begun voluntarily will become embedded in their habits, even though the young person would rather relinquish the role.

School attendance and performance is poor among young care givers; one study found that one in four were missing school. It is a poor reflection on school health services that support has not been provided to help these children back into school.

I found that the authors take a long time to make a few simple points. Having learned that caring is common and not beneficial for children, I wanted to know what I should do but there are no clear messages. The UN Convention on the Rights of the Child should underpin policy, but its impact in the UK has been limited. Only 11 of 71 local authorities defined these children as in need under the Children's Act. The Carers Act 1996 ensures that children may request to have their needs assessed but in a typical British Catch 22, the Act does not oblige departments to provide any services.

A useful type of support are the Young Carers' Projects with now over 100 in the UK. These raise awareness, develop supportive services, act on behalf of young carers to ensure that they receive appropriate benefits, and arrange leisure activities.

The authors identify the need to inform young carers on medical conditions, pointing out that this is woefully inadequate and that many children know so little about their parents' medical condition that they had invented their own version of diagnosis, prognosis, and consequences.

It saddened me that in the section on the role of professionals in identifying and assisting young carers, there is no mention of paediatricians. Is this because they are seen as purely medical, or because they have little contact with young carers? I suspect that it is the former, and that we need to be more outspoken about our wish to work across disciplines on behalf of children's health. We also need to look out for child carers in the families whom we see.

What I searched for was a child or young person's perspective, to try and understand some of the positive aspects of caring. I found little, perhaps because little has been done. Usually children have pretty good answers to difficult questions. Searching hard, I found a reference to a national survey of young people in which they thought that children of 10 should make their own bed and help with the washing up, children of 14 could take a part time job, young people at 16 could baby sit a child of 5, and 18 year olds could marry and vote. Caring for a parent was not mentioned.

So what might paediatricians take away from this book? First, an understanding that children who are carers are around and are being harmed; second, that they are often invisible to the agencies who should be helping; and third, that we have a role in highlighting this type of exploitation, as well as looking out for young carers among our patients. We would do well to network with the agencies locally who have young carers' projects. Only when I was writing this did I discover who they are in my district.

"A look at a community coming together to meet the needs of older adults: An evaluation of Neighbors Helping Neighbors program."

Trickey, R (2008)

The purpose of this study was to evaluate the effectiveness of the Neighbors Helping Neighbors program. The study included surveys of 49 community-residing older adults and 26 community volunteers. Results showed that older adults perceived their quality of life to have improved after receiving social and environmental services; volunteers felt that their contributions to the program had made a significant difference in their community. This exploratory, descriptive study is only a beginning effort, but it holds great promise for suggesting ways to address the needs of the burgeoning aging population in our society.

 

"Being in good hands": next of kin's perceptions of continuity of care in patients with heart failure

Östman, Malin, Bäck-Pettersson, Siv, Sandvik, Ann-Helén, Sundler, Annelie Johansson (2019)

Background Heart failure (HF) is a chronic condition with a variety of diverse symptoms. Patients with HF are usually elderly with multimorbidity, which are both multifaceted and challenging. Being a next of kin to patients with HF is described as a complex task consisting of managing care and treatment, monitoring illness and being an emotional support, while also being able to navigate the healthcare system especially in long-term contact. However, few studies have investigated next of kin's perceptions of continuity of care in connection with HF. The present study aimed to describe continuity of care as perceived by the next of kin who care for patients with HF. Methods This study used a qualitative descriptive design. Semi-structured interviews were conducted with the next of kin ( n = 15) of patients with HF to obtain their perceptions of continuity of care. A phenomenographic analysis method was used to capture the participants' perceptions of the phenomenon. Results The analysis reveals that the next of kin perceive that support from healthcare professionals was strongly associated with experiences of continuity of care. Four categories reveal the next of kin's perceptions of continuity of care: Want to be involved without being in charge; A desire to be in control without acting as the driving force in the care situation; A need for sustainability without being overlooked; and Focusing on making life meaningful while being preoccupied with caregiving activities. Conclusions Next of kin perceive continuity of care, when they have access to care and treatment and when caregivers collaborate, regardless of healthcare is given by primary care, municipalities or specialist clinics. A sense of "being in good hands" sums up the need for continuous support, shared decision-making and seamless transitions between caregivers. It seems important that healthcare organisations safeguard effective and collaborative models. Moreover, professionals need to plan and perform healthcare in collaboration with patients and next of kin.

"Depression Among Recipients of Informal Care: The Effects of Reciprocity, Respect, and Adequacy of Support."

Wolff, J. F. and Agree, E.M. (2004)

Abstract

OBJECTIVES:
The objective of this work was to examine the relationship of perceived quality of care to depression among recipients of informal long-term care.

METHODS:
eneralized estimating equations were used to generate population-average logistic regression models of prevalent depression, using a sample of 420 disabled community-dwelling women aged 65 or older receiving informal care obtained from the Women's Health and Aging Study Caregiving Survey.

RESULTS:
Findings confirm a substantial prevalence of depression among older women with disabilities and support the hypothesis that perceived reciprocity and respect afforded by one's primary caregiver as well as adequacy of instrumental support all were associated with a lower likelihood of being categorized as depressed, even after controlling for sociodemographic, health, and psychosocial characteristics that are known to be related to depression.

DISCUSSION:
Perceived quality of informal care arrangements has a bearing on the psychological health of care recipients. Individuals in more reciprocal relationships and in relationships where they felt respected and valued were less likely to be depressed than their counterparts.

"Easing the way" for spouse caregivers of individuals with dementia: a pilot feasibility study of a grief intervention

Ott, C. H., Kelber, S. T., & Blaylock, M. (2010)

A multicomponent intervention targeting grief symptoms in spouse caregivers of individuals with dementia was pilot tested in this feasibility study. Twenty spouse caregivers completed the study within the 5-month protocol. The five-component intervention, deduced from Meuser, Marwit, and Sanders' Dementia Caregiver Grief Model and tailored to participants' grief, mental health, and learning needs, included supportive grief counseling, emotional support, education, skill building, and referral to community resources. Significant changes were found from baseline to intervention completion for the measures of grief, depression, anxiety, positive states of mind, and self-efficacy, resulting in a moderate effect size of -0.43 for grief to a large effect size of -2.40 for anxiety. Increases in quality of life and decreases in grief persisted at the 8-month follow up for caregivers who continued to provide care in the home. The Easing the Way intervention protocol is a promising caregiver program that warrants further testing in a randomized controlled study.

"Learning to Become a Family Caregiver" Efficacy of an Intervention Program for Caregivers Following Diagnosis of Dementia in a Relative

Ducharme FC, Levesque LL, Lachance LM, Kergoat M-J, Legault AJ, Beaudet LM, et al. (2011)

Purpose: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Design and Methods: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a control group (n = 49) receiving usual care. Eligible participants-primary caregivers of a relative diagnosed with Alzheimer in the past 9 months-were assessed blindly before randomization, at the end of the program (post-test), and 3 months later (follow-up) on different outcomes associated with healthy role transition. Results: The analyses indicated that at post-test and follow-up, caregivers in the experimental group were more confident in dealing with caregiving situations, perceived themselves to be better prepared to provide care and more efficacious in their caregiver role, were better able to plan for the future care needs of their relative, had better knowledge of available services, and made more frequent use of the coping strategies of problem solving and reframing. The program had no significant effect on use of stress-management strategies, perceived informal support and family conflicts. Implications: This program underscores that a proactive intervention approach from the onset of the care trajectory is key to fostering caregiver adaptation to the new challenges they must meet. Adapted from the source document.

"Left alone with straining but inescapable responsibilities": Relatives’ experiences with mental health services

Weimand BM, Hedelin B, Hall-Lord M-L, Sällström C. (2011)

Relatives of persons with severe mental illness experience burden and straining changes in their lives that put their health at risk. Consequently, they need support from health professionals. The aim of this study was to describe experiences from encounters with mental health services as seen from the point of view of relatives of persons with severe mental illness. A qualitative, explorative study was performed, based on two open-ended questions in a cross-sectional study of relatives' health, burden, and sense of coherence (n = 216). A manifest qualitative content analysis was used to describe the relatives' experiences. The findings show that some relatives had experienced positive encounters with health personnel, but the majority of experiences reported were negative. The encounters can be summarized into one main category: "Left Alone with Straining but Inescapable Responsibilities." Two categories emerged: "Striving for Involvement for the Sake of the Mentally Ill Person," and "Wanting Inclusion for the Sake of Oneself." There is a gap between relatives' needs for support in order to handle their own situation in relation to their mentally ill next of kin, and what they actually receive from the mental health services. The findings suggest that health professionals should collaborate with and support these relatives.

"My Friends are my Family‘: an argument about the limitations of contemporary law's recognition of relationships in later life."

Westwood, S. (2013)

Current UK law and social policy privilege the conjugal couple, biological and filial relationships. Friendship remains on the margins of regulatory recognition. Yet friendship is of growing significance in contemporary social relationships. This is particularly so for older people, especially for older lesbian, gay and bisexual people. This paper explores the place of friendship in key areas of law and social policy relating to older age: pensions, benefits and inheritance; medical decision making; mental health and mental capacity legislation; and social care policy. The extent to which contemporary law is keeping up with changing relationship forms will be considered, together with its implications for equality in later life

"Non-palliative care" - a qualitative study of older cancer patients' and their family members' experiences with the health care system.

Fjose M., Eilertsen G., Kirkevold M., Grov EK. (2018)

BACKGROUND: Among all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services.
METHODS: We used a qualitative descriptive design. Data was collected through family group interviews with 26 families. Each interview consisted of an older home dwelling cancer patient and one to four family members with different relationships to the patient (e.g. spouse, adult children and/or children-in-law). Data was analysed by qualitative content analysis.
RESULTS: The main theme is "Non-palliative care" - health care services in the palliative phase not tailored to family needs. Three themes are revealed: 1) exhausting cancer follow-up, 2) a cry for family involvement, and 3) fragmented care.
CONCLUSION: The health services seem poorly organised for meeting the demands of palliative care for older home dwelling cancer patients in the palliative phase and their family members. Close family members would like to contribute but health services lack systems for involving them in the follow-up of the patient.

"Om åtminstone blöjleveranserna kunde komma i tid!". Vårda och vårdas. Äldre och deras anhöriga, två undersökningar år 2000, utförd på uppdrag av Socialstyrelsen

Sundström, G. (2001)

Den riksrepresentativa undersökning av hemmaboende äldre 75+ som gjordes våren 2000(Socialstyrelsen 2000a) är utgångspunkten för föreliggande två studier av äldre som själva är anhörigvårdare respektive av äldre som får anhörigvård.Av äldre som själva är anhörigvårdare har i föreliggande undersökning enbart personer som vårdar någon i det egna hemmet valt att medverka; nästan alla är make/maka till den vårdade. Detta innebär en något beskuren bild av äldre som omsorgsgivare, men troligen en adekvat belysning av äldre som vårdar sin partner. Bland äldre som fick mycket hjälp-omsorg-vård intervjuades anhöriga, av dessa var drygt hälften en maka-make. Totalt omfattar intervjuerna 56 personer (20 respektive 36 i dessa två grupper). I båda kategorierna är likheterna mer slående än skillnaderna.De flesta anhörigvårdare är själva äldre. Inte så få är män, särskilt inom äktenskapets ram. När makar står för omsorgen har vården ofta pågått länge och för en del har den medfört nedsatt hälsa.Vårduppgifterna är ibland fysiskt och/eller psykiskt betungande och medför ofta inskränkningar i den anhöriges sociala liv. Få av dem har arbete och än färre har tagit ledigt för att vårda. De vårdade har vanligen mycket nedsatt funktionsförmåga och är helt beroende av vårdaren, något som är tydligt belastande. Ganska många är drabbade av demenssymptom eller andra kognitiva nedsättningar.Det mest påtagliga är att så få använder offentlig hjälp. De som har sådan, har ofta mycket få insatser. De använder ett fåtal hemhjälpstimmar eller enbart annan hemtjänst såsom larm, matlåda och/eller färdtjänst. Många har dock fått sina bostäder anpassade och några får omfattande offentlig hjälp och är uttalat nöjd med den, men många av dem som inte har offentlig hjälp är också nöjda. Minst en tredjedel av anhörigvårdarna har uttalade önskemål om offentligt stöd.Manliga anhörigvårdare använder sig oftare av offentlig hjälp (hemhjälp m.m.) än kvinnliga anhöriga. Många av vårdarna får också hjälp av andra anhöriga, när sådana finns att tillgå. Påfallande många står dock utan stöd från andra anhöriga, bland de yngre är många enda barnet eller det enda tillgängliga barnet. Totalt sett bor nästan alla vårdare tillsammans med eller mycket nära den de hjälper. De vårdade oftast färre anhöriga (partner, barn, syskon, annan släkt) än den äldre befolkningen i allmänhet.Mycket få vårdare efterlyser spontant något offentligt stöd. Endast hälften efterfrågar hjälp när de får ta ställning till konkreta listor över tänkbara stödformer. De som önskar hjälp vill endera ha "avlastning" och/eller rehabilitering respektive (mer) hjälp med hushållet. Endast en sjättedel avvisar offentligt stöd i alla former. När anhöriga formulerar önskemål är de ofta mycket blygsamma: "om åtminstone blöjleveranserna kom i tid!". De offentliga insatserna framstår ibland som fantasilösa, otydliga och inflexibla. Studien fann också flera exempel på anmärkningsvärda missförstånd. Uppenbart är att många av dessa anhörigvårdare har (fått) föga information om stödmöjligheter m.m.Anmärkningsvärt många anhöriga (ca. hälften) önskar ekonomisk ersättning för sina insatser, några har redan små belopp för det de uträttar. När anhörigvårdare begärt ersättning har det för flera avslagits utan motivering eller på tveksamma grunder.Trots allt är närmare hälften i stort sett nöjda med sin situation och med den offentliga hjälp de får. Undersökningen finner åtskilliga exempel på illa fungerande offentlig hjälp, men också flera goda exempel på välfungerande insatser med mycket nöjda vårdtagare och anhöriga. Knappt hälften av vårdarna är intresserade av kontakt med frivilligverksamhet, något som ett fåtal redan har. Dessa är i allmänhet tydligt nöjda med detta stöd.

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson