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Fönstervy

Elliot Ellen Kellman (2022)

Fönstervy består av en samling tankekorn och dikter som har tillkommit under 25 års tid under en svår livsresa. Här och där har det glimtat ljust med dels galghumor och dels ren glädje. Livet, ja. Hemskt och härligt, inget att ta på för stort allvar men ändå enormt värdefullt - kontrasternas resa. 

Fönstervy är en samling av de kuriositeter man kan få syn på under en resa vidare någonstans. 

Vi barn i Underlandet

Ellen Kellman (2020)
Denna bok är en självbiografisk roman och handlar om Ellen Kellmans liv.

Redan som ett litet barn invaderas Anna till kropp och själ av en pappa som är psykopat och incestutövare. Ständigt lever hon med förtäckta hot och känslomässig utpressning. Med tiden blir övergreppen allt mer brutala. Till slut blir Anna så desperat och ångestfylld att hon vid tolv års ålder försöker ta sitt liv och på så vis hamnar hon i barnpsykatrins händer.

Efter att ha räddat sig undan pappans övergrepp vistades Anna på behandlingshemmet som hon senare kom att kalla Hell Hotell. Hon skildrar en del av samhället som sällan beskrivs - en psykvård som åter traumatiserar, med dysfunktion i vården som följer på dysfunktionen i hemmet.

I boken skildras också en nära men hårt prövad systerrelation, för hur smärtsamt är det inte för den anhöriga som måste stå bredvid, för syskonet, som själv är maktlös? I dysfunktionella konstellationer är alla drabbade, och alla har varit smärtfyllda barn som förtjänar att läka och bli fria. Denna bok handlar om alla oss - Vi barn i Underlandet!

Boken vill även bredde kunskapen om vad trauma och sexuella övergrepp gör mot en människa och samtidigt skildra de små och stora ting som gör livet värt att leva. Den vill också visa att minnena av övergreppen är svåra men att man kan läka. Denna bok vill ge hopp åt alla drabbade och insikt till de som arbetar med barn och ungdomar.

 

Margareta

Ellen Kellman (2017)
Margareta tar ingenting för givet. Föräldrar som bryr sig om sina barn och klasskamrater som är schyssta är något som andra har, men inte Margareta. Hon är van vid att se efter sig själv, och lillebror Konrad, som är en ganska bra lillebror. Livet går upp och ner för elvaåriga Margareta. Ibland är det svårt och då måste Margareta kämpa. Men flera trevliga överraskningar väntar. Och så när ingen ser... Margareta har en alldeles underbar hemlighet.
 

Pappan som slutade vara en superhjälte

Janne Persson (2020)

En dag när Wille vaknar märker han att något inte är som vanligt med pappa. Han har åkt till jobbet utan att ta på sig superhjältekläderna. Har han bara "pappyjamasen" på sig? Och hans "hjältelefon" ligger kvar i köket. Han som alltid är så noga med allt. Wille och hans storasyster Agnes blir oroliga och ger sig ut för att leta efter pappa. Aldrig hade de kunnat ana vad som skulle hända.


Pappan som slutade vara en superhjälte är en bok om utbrändhet och utmattningsdepression. Att förklara för barn vad som händer när en förälder drabbas av utbrändhet är inte alltid lätt. I den här boken får vi följa med på hela resan från det jobbiga och ibland skrämmande till den väg som leder tillbaka.

När mammas tankar ändrade färg

Sara Galli (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.

Lex Katarina

Maria Estling Vannestål (2016)

Katarina är inte sextio år med utflyttade barn, en trygg karriär och all tid i världen när hennes mamma drabbas av en demenssjukdom. Katarina är strax under fyrtio, chef, fru och trebarnsmamma. Hon lever i sandwichgenerationen, klämd av krav både uppifrån och nedifrån. Alltid är det någon som behöver henne. Att dessutom tvingas bevittna sin mammas gradvisa nedmontering är en tung process som väcker svårhanterliga känslor vid sidan av sorgen. I synnerhet när den nära och kärleksfulla relationen mellan mor och dotter inte är så självklar som den borde vara.

Lex Katarina är en bok om skuld, skam och otillräcklighet, men också om den vardagsglädje, utveckling och försoning som skymtar bakom molnen.

Anhörig i ett hav av känslor : Igenkänning och stöd när livet utmanar

Maria Estling Vannestål (2022)

I Sverige finns mer än en miljon anhöriga som vårdar eller stöttar en närstående med fysisk eller psykisk ohälsa eller funktionsnedsättning. Även om var och en har sin unika historia är det mycket som förenar oss.

"Anhörig i ett hav av känslor" ger röst åt våra berättelser. Om ovisshet och oro, otillräcklighet och frustration, skuld och skam, sorg och maktlöshet. En situation som kan utveckla oss som människor, men också utmana och slita ut oss. Det handlar om avgrunder och guppande känslohav, men också om stillsamma solgläntor och fascinerande utsiktsplatser.
Boken vänder sig till dig som själv är anhörig. Här kan du få igenkänning, förstå att du inte är ensam om det du går igenom och hitta vandringsstavar för din resa. Det är också en använd-bar bok för dig som möter anhöriga i din profession eller ditt ideella engagemang.

Informal care provision among male and female working carers: Findings from a Swedish national survey

Vicente Joana, McKee Kevin J., Magnusson Lennart, Johansson Pauline (2022)
Abstract 

Introduction

Informal carers in paid employment–working carers (WKCs)—have complex support needs. However, little is known about WKCs’ pattern of informal care provision, the support they receive, the impact providing care has on their employment, and how these vary between male and female WKCs. This study describes the pattern of informal care provision and received support among Swedish WKCs.

Research method/Design

The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire addressed the type and extent of informal care provided, support received and the impact of care provision on employment. Of the 30,009 people who received the questionnaire, 11,168 (37.3%) responded, providing an analytic sample of 818 (7.32% of respondents) employed or self-employed informal carers.

Findings

A typical Swedish WKC was a middle-aged female, providing weekly or daily care to a non-cohabitant parent, who experiences care as sometimes demanding and receives no formal support as a carer. Female WKCs were more likely than males to care alone and with higher intensity, to report a need for help in meeting their care-recipient’s needs, and to experience care as demanding. Approximately 17% of WKCs reported their employment had been affected due to caring, 40% their ability to work, and 31% their career development opportunities. Female WKCs’ ability to work was affected more than males’, and they were more commonly prevented from applying for work.

Conclusion

Swedish female WKCs compared to males provide more hours of informal care, across more care domains, more often alone. This places them in a challenging situation when combining paid work and care. Greater recognition of the challenges faced by WKCs is required in Sweden and other countries, as are policies to reduce gender inequalities in informal care provision in this group.

Tvång : en guide för dig som anhörig

Annkatrin Noreliusson (2022)

Är du anhörig till någon som har tvång? Då kan den här boken bli din nya följeslagare, en hand att hålla i när du behöver stöd och kunskap om ocd.

Under åren som anhörig till en son med tvångssyndrom har jag många gånger önskat att jag hade en guidebok för oss som lever i en familjesituation med tvång. I de grupper med anhöriga som jag möter i mitt professionella arbete som coach i anhörigklubben OCDhjälpen ser jag ett skriande behov av kunskap om det smärtsamma tillstånd som tvångssyndrom är, för att få stöd att hantera en vardag som ser så annorlunda ut än de flesta andras. Till slut kände jag att det var mitt uppdrag att skriva boken du nu har i din hand.

Med denna bok vill jag göra dig uppmärksam på de vanligaste fallgroparna som vi anhöriga ofta ramlar ner i så att du är rustad med bättre beredskap och kanske kan ta dig runt fallgropen i stället. Har du redan ramlat ned och sitter där på botten så ger jag praktiska och konkreta tips om var du hittar stödet att klättra upp igen. 

Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice

Sara Santini, Marco Socci, Barbara D’Amen, ....Rosita Brolin, Lennart Magnusson, Elizabeth Hanson (2020)

Abstract: Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15–17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any di erence in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed e ect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient.Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.

The awareness, visibility and support for young carers across Europe: a Delphi study

Henk Herman Nap, Renske Hoefman , Nynke de Jong, Lieke Lovink, Ludo Glimmerveen, Feylyn Lewis, Sara Santini, Barbara D’Amen, Marco Socci, Licia Boccaletti, Giulia Casu, Alessandra Manattini, Rosita Brolin, Karina Sirk, Valentina Hlebec, Tatjana Rakar, Tjasa Hudobivnik, Agnes Leu, Fabian Berger, Lennart Magnusson, Elizabeth Hanson (2020)

Abstract
Background: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15–17 years old.
Methods: A two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions tosupport YCs, and (iii) future strategies to support YCs.
Results: Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remainschallenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care.
Conclusions: In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.

I den bästa av världar

Lena Nylander, Mats Jansson (2022)

Boken vänder sig huvudsakligen till personal inom gruppbostäder för vuxna med intellektuell funktionsnedsättning och autism; till enhetschefer, stöd- och omsorgspedagoger, LSS-handläggare och politiker, men jag tror att flera av delarna i boken också kan läsas med stor behållning av anhöriga. 

Living an ordinary life – yet not: the everyday life of children and adolescents living with a parent with deafblindness

Karina Huus, Ann-Sofie Sundqvist, Agneta Anderzén-Carlsson, Moa Wahlqvist, Maria Björk (2022)

Introduction: The family life of people living with one family member with deafblindness has
been sparsely described.
Purpose: The aim of the study was to explore how children experience their everyday family
life when having a parent with deafblindness.
Methods: An explorative study in which data have been collected by qualitative interviews of
children. Qualitative content analysis has been used for analysing the data.
Results: Overall theme; Living an ordinary life—yet not, is based on four categories with
subcategories. A family like any other describes: Having the same family life as their friends,
Acting like other children and It is what it is. Different everyday life describes: Acknowledging
differences, Adjusting to the parent’s needs and Financial strain. Being there for the parent
describes: Helping the parent and Protecting the parent from harm. Being emotionally affected
describes: Feelings of frustration, Feelings of compassion and Need for support.
Conclusion: Children as relatives of parents with deafblindness have been given a voice. The
children live an ordinary life, but at the same time a different ordinary life. Professionals need
to take the child and their needs into account when support is given.

The precariousness of asylum-seekers’ care and support: informal care within and because of the immigration process

Marcus Herz, Jesper Andreasson, Frida Andréasson (2022)
Abstract [en]

Using ethnographic data, this article aims to analyse the provision of informal care by asylum-seekers in Sweden and how this intersects with the(ir) asylum process. The article argues that asylum-seekers are framed by the Swedish welfare system and immigration authorities as ungrievable and deportable, which not only impedes their access to formal care systems and values, but also creates a strong need for informal care. Further, it is suggested that the informal care provided by asylum-seekers should be included in current debate on informal care and its impact on people’s lives. 

Three caregiver profiles: who are they, what do they do, and who are their co-carers?

Jegermalm, Magnus, Torgé, Cristina Joy (2021)
Abstract [en]

In Sweden, a country with one of the highest public spending on long term care, there is also extensive informal care, i.e. unpaid care by family, friends, or neighbours. In this article, we explore the spectrum of informal caring using data from a nationally representative survey of caregivers in the Swedish population. We describe three different caregiver profiles and analyse them in relation to their panorama of care, i.e. the extent to which caring is shared with other formal- and informal co-carers. The first profile, the co-habitant family carer, consists of caregivers providing help for someone in the same household with special care needs, and were mostly alone in intensive caregiving. The second profile, persons in the care network, consists of caregivers providing help to someone with care needs in another household. They have a network of both informal and formal co-carers. Finally, the helpful fellowman consists of caregivers providing help for someone without special needs in another household. In developing relevant carer support, it is important to acknowledge that caregivers are not a homogenous group. Thus, to fulfil national ambitions to support carers across the board, policy and practice need to have a diverse group of carers in mind.

Former, förutsättningar och mål för anhörigstöd från anhörig- konsulenters och bistånds- handläggares perspektiv

Pia Nilsson, Cristina Joy Torgé, Bo Rolander, Magnus Jegermalm (2022)

Resultat från en webbaserad enkät i Jönköpings län och Stockholms län.

Den här rapporten är en resa genom anhörigkonsulenters och biståndshandläggares erfarenheter, uppfattningar och förutsättningar för att bedriva anhörigstöd och vilka former av stöd som erbjuds anhöriga.

Studien baseras på en webbenkät utskickad till anhörigkonsulenter och biståndshandläggare i Jönköpings län och Stockholms län och vill bidra till en fördjupad kunskap och förståelse för den komplexitet som yrkesrollerna hanterar i sitt dagliga arbete med anhörigstöd.

Få studier har hittills gjorts ur det här perspektivet. Att sätta fokus på anhörigkonsulenterna är givet, men biståndshandläggarna möter också många anhöriga i sin yrkesutövning. Tillsammans ger de oss en bredare bild av de förutsättningar man har för att bedriva arbetet med anhörigstöd, vilka stödformer man erbjuder och vilka arbetsformer man använt under covid-19-pandemin. Vi får också en bild av i vilken utsträckning man når de anhöriga och i vilken omfattning man samarbetar med andra aktörer kring anhörigstöd. I studien har vi också ställt frågorom synen på vad socialtjänstens anhörigstöd kan och bör leda till.

Resultaten i studien är många och ur dem har vi identifierat fem utvecklingsområden som synliggör möjliga riktningar för kommunerna i arbetet med att utveckla anhörigstödet. På så sätt önskar vi bidra till att stärka det viktiga arbete som anhörigkonsulenter och biståndshandläggare gör dagligen för att underlätta vardagen för alla anhöriga de möter.

Vägar till förbättrad samordning av insatser för barn med funktionsnedsättning

Socialstyrelsen (2017)

Kunskapsstödet presenterar en modell för hur samordning av insatser för barn med funktionsnedsättning kan förbättras av kommuner och landsting. Modellen förväntas öka barns tillgång till fungerande stöd och minska föräldrars arbetsbelastning. Här ges organisatoriska och praktiska framgångsfaktorer i arbetet med att utveckla samordning.

Vägen mot implementering av familjecentrerad omvårdnad

Pusa, Susanna (2019)

Avhandling

Bakgrund. När människor är inkluderade i varandras liv påverkar en förändring av livssituationen hos en person även de övriga personerna som står den nära. Det innebär att när en person drabbas av ohälsa eller sjukdom påverkas även personens familj. Familjens upplevelse av den situation som uppstår i samband med ohälsa kan dessutom negativt påverka familjemedlemmarnas medvetenhet om familjens tillgängliga styrkor och resurser, vilket i sin tur kan påverka familjers kamp för att återfå och bibehålla hälsa. Traditionellt sett har vården fokuserat på att erbjuda stöd på personnivå, och främst då till patienter. De senaste decennierna har dock en tendens uppmärksammats till ökad förståelse för att hela familjen behöver inkluderas i omvårdnaden. Att anamma ett familjecentrerat förhållningssätt – det vill säga, att se och möta familjen som en enhet och som ett system – har visat sig ha flera fördelar utifrån såväl patient- och familje- som sjuksköterskeperspektiv. Detta har medfört en efterfrågan på forskning om hur familjecentrerad omvårdnad kan läras ut och implementeras i den kliniska hälso- och sjukvården. Syfte: Det övergripande syftet med avhandlingen är att belysa erfarenheter av stöd från distriktssköterskor/sjuksköterskor till familjer i ordinärt boende, samt att utvärdera implementering av familjecentrerade samtal.

Välkommen till helvetet

Nanna Helsén, Stina Helsén (2020)

Det hade gått så snabbt, så oerhört snabbt. Innan jag ens hade hunnit reflektera över det hade jag tappat de där första kilona. Och all kontroll. Och plötsligt rasade allt.?

Förloppet är hastigt när 15-åriga Nanna insjuknar i anorexi, på bara några veckor rasar hon i vikt och läggs in för akut vård. Hennes tillstånd är livshotande och livet vänds uppochner för hennes familj, föräldrarna ständigt vid hennes sida. Nanna plågas av grav ångest och är helt i sjukdomens våld. Hennes enda fokus är att låta bli att äta, sluta existera.

Hemma är 13-åriga lillasystern Stina ledsen och arg. Det som tidigare var en nära syskonrelation upphör tvärt. Hon får plötsligt mer frihet än hon önskar och kämpar för att ha en vardag när allt handlar om sjukdom. Stina har heller ingen lust att spela den lättsamma dottern precis när det råkar passa föräldrarna.

Nanna och Stina, idag vuxna, berättar öppet och rättframt om ett år med anorexin och ångesten ur sina olika perspektiv. Sjukdomen påverkar i hög grad anhöriga. Välkommen till helvetet är en drabbande skildring av just anorexi, men mycket är aktuellt även för andra typer av psykisk sjukdom.

Systrarna Nanna Helsén, född 1989, och Stina Helsén, född 1991, är uppvuxna i Stockholm. Välkommen till helvetet är deras första bok. Till vardags arbetar Nanna med affärsutveckling och Stina är lärare.

Vänd dig hit! Guide för kommuner och landsting att kartlägga och utveckla sin första linjeverksamhet för psykisk hälsa hos barn och unga

Sveriges Kommuner och Landsting (2012)

På många platser i Sverige saknas en tydlig första linje, den nivå som har i uppgift att
först ta emot barn och ungdomar som mår psykiskt dåligt eller deras familjer – oavsett
om problemet har psykologiska, medicinska, sociala eller pedagogiska orsaker.1
Bland
annat inom ramen för Psynk – psykisk hälsa barn och unga pågår såväl lokalt som nationellt
utvecklingsarbete för att förbättra situationen för barn som söker hjälp för någon
form av psykisk ohälsa eller relaterade problem.
Denna guide ska vara ett stöd för beslutsfattare i kommuner och landsting som vill
kartlägga sin första linje och hitta utvecklingsmöjligheter.
Guiden är indelad i två sektioner. Den första sektionen, Kapitel 1–4, beskriver vad
en första linje är och vad som karakteriserar en bra första linje, samt möjliga sätt att
organisera första linjen. Den andra sektionen, Praktisk del 1 och 2, innehåller praktiskt
stöd som kan hjälpa kommuner och landsting att beskriva sin modell och ger vägledning
kring möjliga sätt att organisera arbetet i framtiden.
Denna guide ingår i en serie publikationer som tas fram inom Psynk. Den kan läsas
fristående, men läses med fördel tillsammans med skrifterna "Rätt insatser på rätt nivå
för barn och ungdomar med psykisk ohälsa – en kunskapssammanställning" 2, "Värdet
av en god uppväxt – Sociala investeringar för framtidens välfärd" 3 samt "Slutrapport
från Modellområdesprojektet 2009–2011" 1. Vidare handledning, inspiration och material
återfinns på projektets hemsida www.skl.se/psynk eller kan fås genom kontakt med
det centrala projektkansliet på Sveriges Kommuner och Landsting i Stockholm.

Young children of parents with substance use disorders (SUD): a review of the literature and implications for social work practice

Peleg-Oren N, Teichman M. (2006)

This article reviews the scientific literature that focuses on school-age children of parents with substance use disorder (SUD). The review examined the subjects, instruments, and results of 10 scientific studies published from 1985 to the present (2006). Generally, school-age children of parents with SUD demonstrated a variety of emotional, cognitive, behavioral, and social problems. Specifically, (a) children of drug users (CODs) were at higher risk than children of alcoholics (COAs) for psychopathology and functional impairments, and (b) Children of parents diagnosed as having SUDs (particularly alcohol), along with anti-social personality disorder (ASPD) showed more negative psychosocial outcomes than children whose parents did not have ASPD. Recommendations for future research and implications for social work practice are discussed.

Contributing to making the school a safe place for the child: School nurses' perceptions of their assignment when caring for children having parents with serious physical illness

Marie Golsäter, Karin Enskär, Susanne Knutsson (2017)

Abstract

Aim: To explore how school nurses perceive their assignment when caring for children having parents with serious physical illness.

Design: An explorative inductive qualitative design.

Method: The study is based on interviews with 16 school nurses. The interviews were subjected to qualitative content analysis.

Results: The main category, "Contribute in making the school a safe place for the child", reveals how the school nurses try to contribute to making the school a safe place for a child when his/her parent has a serious physical illness. They support children through individual support, as well as at an overall level in the school health team to make the school, as an organization, a safe place. Routines and collaboration to recognize the child when his/her parent has become ill is described as crucial to accomplishing this assignment.

The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness: A feasibility study from parents' perspectives

Anette Alvariza, Li Jalmsell, Rakel Eklund, Malin Lövgren , Ulrika Kreicbergs (2021)

Objective: One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.

Method: A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.

Results: FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.

Significance of results: According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

Promoting Mental Health and Well-Being Among Adolescent Young Carers in Europe: A Cross-National Randomized Controlled Trial Study

Valentina Hlebec, Irena Bolko, Giulia Casu, Lennart Magnusson, Licia Boccaletti, Renske Hoefman, Alice De Boer, Feylyn Lewis, Agnes Leu, Francesco Barbabella, Rosita Brolin, Sara Santini, Marco Socci, Barbara D’Amen, Daniel Phelps, Tamara Bouwman, Nynke de Jong, Elena Alder, Vicky Morgan, Tatjana Rakar, Saul Becker, Elizabeth Hanson (2024)

Background/Objectives: This cross-national study focuses on adolescents who provide care and support to family members or significant others. Current evidence regarding their mental health and solutions to strengthen it is limited and mostly available in a few countries. The aim of this study is to evaluate the results of a primary prevention intervention for improving the mental health and well-being of adolescent young carers (AYCs) aged 15–17 years in six European countries. The intervention was based on a psychoeducational program and tools adapted from the Discoverer, Noticer, Advisor, and Values (DNA-V) model. Methods: We designed a randomized controlled trial with 217 AYCs participating in the study, either in the intervention or control group. Quantitative and qualitative data were collected via questionnaires at baseline, post-intervention, and a 3-month follow up. Results: The results were mixed, as positive improvements in primary (i.e., psychological well-being and skills) and secondary (school/training/work functioning) outcomes were shown by the experimental group but, in most cases, they were not statistically significant. The qualitative data supported positive claims about the intervention and its appropriateness for AYCs. Conclusions: The study implementation during the peak of the COVID-19 pandemic forced the consortium to adapt the design and may have influenced the results. More long-term studies are needed to assess similar mental health programs with this hard-to-reach target group.

The risks of job flexibility: an analysis of reconciling paid work and informal care across organisations using the capabilities approach

Marcel Hoogenboom, Mara A. Yerkes, Wilco Kruijswijk (2024)

While welfare states and work organisations often provide policies to facilitate a reconciliation of paid work and informal care, the literature pays little attention to employees’ actual capabilities to engage with such policies. In this article, we apply the capabilities approach to interview data from managers and employees in the Netherlands to understand employees’ use or non-use of the policies. We found that job flexibility may help workers reconcile work and care in the short run but that respondents with greater job flexibility reported more health problems than respondents with less flexibility, which calls into question the sustainability of these policies.

Seeking a care–life balance: family carers’ perspectives on how quality of life can improve when caring for an older person living with dementia

Kristin Häikiö, Jorun Rugkåsa (2024)

Many family carers of older people living with dementia report reduced quality of life, but limited research has investigated what they believe could improve it. Our thematic analysis of in-depth interviews with 23 family carers questions the standardisation of carer support and the appropriateness of the current scope of services, and suggests strengthening carers’ independent right to support. We propose the notion of a ‘care–life balance’, which also draws attention to the different logics inherent in informal and formal care that future service development should seek to reconcile to better support families affected by dementia.

Dignity for Deeply Forgetful People How Caregivers Can Meet the Challenges of Alzheimer's Disease

Stephen G. Post (2022)

For caregivers of deeply forgetful people: a book that combines new ethics guidelines with an innovative program on how to communicate and connect with people with Alzheimer's.

How do we approach a "deeply forgetful" loved one so as to notice and affirm their continuing self-identity? For three decades, Stephen G. Post has worked around the world encouraging caregivers to become more aware of―and find renewed hope in―surprising expressions of selfhood despite the challenges of cognitive decline.

In this book, Post offers new perspectives on the worth and dignity of people with Alzheimer's and related disorders despite the negative influence of "hypercognitive" values that place an ethically unacceptable emphasis on human dignity as based on linear rationality and strength of memory. This bias, Post argues, is responsible for the abusive exclusion of this population from our shared humanity. With vignettes and narratives, he argues for a deeper dignity grounded in consciousness, emotional presence, creativity, interdependence, music, and a self that is not "gone" but "differently abled." Post covers key practical topics such as:

• understanding the experience of dementia
• noticing subtle expressions of continuing selfhood, including "paradoxical lucidity"
• perspectives on ethical quandaries from diagnosis to terminal care and everything in between, as gleaned from the voices of caregivers
• how to communicate optimally and use language effectively
• the value of art, poetry, symbols, personalized music, and nature in revealing self-identity
• the value of trained "dementia companion" dogs

At a time when medical advances to cure these conditions are still out of reach and the most recent drugs have shown limited effectiveness, Post argues that focusing discussion and resources on the relational dignity of these individuals and the respite needs of their caregivers is vital. Grounding ethics on the equal worth of all conscious human beings, he provides a cautionary perspective on preemptive assisted suicide based on cases that he has witnessed. He affirms vulnerability and interdependence as the core of the human condition and celebrates caregivers as advocates seeking social and economic justice in an American system where they and their loved ones receive only leftover scraps. Racially inclusive and grounded in diversity, Dignity for Deeply Forgetful People also includes a workshop appendix focused on communication and connection, "A Caregiver Resilience Program," by Rev. Dr. Jade C. Angelica.

The relevance of the workplace for combining employment and informal care for older adults: results of a systematic literature review

Thomas Geisen, Karl Krajic, Sibylle Nideröst, Ingrid Mairhuber, Charlotte Dötig, Andrin Altherr, Salome Schenk, Reka Schweighoffer (2024)

The significance of formal and informal supports and barriers on the company level for combining employment and informal care for older adults has rarely been investigated. This is one of the main findings of a systematic literature review. This systematic literature review elucidates what can be learned from research on practices that have been developed to maintain a sustainable work–care balance. Research indicates that firms have rarely actively addressed the topic and many seem unaware of the challenges employees are facing and the support they need. If firms offer support, they often favour individual, case-based solutions, whereas systematic approaches seem less likely to be put in place. In general, the findings show that better support for companies and for carers would seem important, even urgent, but the knowledge base for offering this support is not well developed.

Barriers and facilitators to physical activity among informal carers: a systematic review of international literature

Lindsay, Rosie K. Vseteckova, Jitka, Horne Joanna, Smith Lee, Trott Mike, De Lappe Joseph, Soysal Pinar, Pizzol Damiano, Kentzer Nichola (2023)

Physical activity is beneficial for overall health; however, informal carers may have lower levels of physical activity than non-carers. The primary aim of this systematic review was to identify barriers and facilitators to physical activity from the perspective of carers internationally, excluding the UK. The study found that barriers to physical activity include lack of time, fatigue, lack of motivation and lack of support. Facilitators of physical activity include health and well-being as a motivator, using physical activity as a coping mechanism, and social support. Participating with the care recipient and care duties were both barriers and facilitators depending on the study or participant

Depends on whom you ask: Discordance in reporting spousal care between older women and men across European welfare states

Ricardo Rodrigues, Cassandra Simmons, Eszter Zólyomi, Afshin Vafaei, Johan Rehnberg, Selma Kadi, Marco Socci, Stefan Fors, Susan P. Phillips (2024)

Purpose: We aim to investigate systematic differences in reporting spousal care between caregivers and cared-for persons and their possible effects for the analysis of care regimes and correlation of care with health.

Materials and methods: Using information on care provided/received from the Survey on Health, Ageing and Retirement in Europe (SHARE), we estimate the prevalence of spousal care and discordance between caregivers and cared-for persons in the reporting of care among caregiving dyads. Multinomial regressions are used to estimate systematic differences in reporting spousal care. We then use multivariable logistic regressions to assess the association between discordance in reporting informal care and carer's self-rated health (SRH) and depression using the EURO-D scale.

Results: Only 53.9 % of dyads report care that is confirmed by both spouses. Multinomial regressions show that agreement on care being provided/received is more common when women are caregivers, while men are likely to underreport when providing or receiving personal care. Prevalence of spousal care across care regimes is sensitive to who reports care. There is no effect on the association of care with SRH regardless of who identifies the carer, while the magnitude and statistical significance of the association between depression symptoms and care varies according to the choice of respondent.

Conclusions: Informal care may be understated across Europe when relying solely on carer self-identification through description of tasks in surveys. From a policy standpoint, relying on self-identification of carers to access support or social benefits may potentially reduce the take-up of such benefits or support.

Informal care for people with dementia in Europe

Ron Handels, Somboon Hataiyusuk, Anders Wimo, Anders Sköldunger, Christian Bakker, Anja Bieber, Alfonso Ciccone, Carlo Alberto Defanti, Andrea Fabbo, Sara Fascendin, Lutz Frölich, Chloé Gervès-Pinquié, Manuel Gonçalves-Pereira, Kate Irving, Raymond Koopmans, Patrizia Mecocci, Paola Merlo, Bernhard Michalowsky, Oliver Peters, Yolande Pijnenburg, Óscar Ribeiro, Geir Salbaek, Larissa Schwarzkopf, Hilde Verbeek, Marjolein de Vugt, Bob Woods, Orazio Zanetti, Bengt Winblad, Linus Jönsson (2025)

Introduction: Informal care estimates for use in health-economic models are lacking. We aimed to estimate the association between informal care time and dementia symptoms across Europe.

Methods: A secondary analysis was performed on 13,529 observations in 5,369 persons from 9 European pooled cohort or trial studies in community-dwelling persons with dementia. A mixed regression model was fitted to time spent on instrumental or basic activities of daily living using disease severity and demographic characteristics.

Results: Daily informal care time was 0.5 hours higher in moderate compared to mild and 1.3h higher in severe compared to mild cognitive impairment. Likewise, this was 1.2h and 2.7h for functional disability and 0.3h and 0.6h for behavioral symptoms in the same directions.

Discussion: Estimates can be used in both single- and multi-domain health-economic models for dementia in European settings.

Keywords: Dementia; costs; health-economic evaluation; informal care; resource use.

The psychosocial functioning of children and spouses of adults with ADHD

Minde, K., Eakin, L., Hechtman, L., Ochs, E., Bouffard, R., Greenfield, B., & Looper, K. (2003)

BACKGROUND:
It is unclear what the impact of parental ADHD is on the day-to-day life of the rest of the family and how it contributes to the intergenerational transmission of this disorder.

METHOD:
The psychosocial functioning of 23 spouses and 63 children of 33 families with an ADHD parent and 20 spouses and 40 children of 26 comparison families was examined. Both adults and their spouses were assessed for lifetime and current Axis I and Axis II diagnoses, present general psychiatric symptoms and their marital relationships. Children were screened for ADHD and other problems, using the C-DISC, CBLC, TRF and the Social Adjustment Inventory.

RESULTS:
Children with an ADHD parent had higher rates of psychopathology than those from comparison families. Children with ADHD had more co-morbidities than non-ADHD children. Family and marital functions were impaired in ADHD families regardless of the gender of the affected parent. Children without ADHD from families with one psychiatrically healthy parent did well while the behaviour of children with ADHD was always poor and not associated with parental mental health.

CONCLUSION:
The results underscore the strong genetic contribution to ADHD and the need to carefully assess the non-ADHD parent as they seem to influence the well-being of non-ADHD children in families with an ADHD parent.

The relationship between attachment styles and childhood trauma: a transgenerational perspective - a controlled study of patients with psychiatric disorders

Ozcan, N. K., Boyacioglu, N. E., Enginkaya, S., Bilgin, H., & Tomruk, N. B. (2016)

IMS AND OBJECTIVES:
This study had two aims. The first aim was to compare attachment styles and traumatic childhood experiences of women with psychiatric disorders and their children to a control group. The second aim was to determine the relationship between attachment styles and traumatic childhood experiences both in mothers and their children.

BACKGROUND:
According to attachment theories, trauma in an early relationship initiates a developmental cascade in which insecure attachments may occur.

DESIGN:
A cross-sectional, descriptive study which, employed a case-control design, was performed between May 2013-March 2014.

METHODS:
This study was conducted in 63 women with psychiatric disorders and their children. The control group consisted of 63 women without any psychiatric disorders and their children. Data were collected using questionnaire forms, including the Adult Attachment Style Scale and the Childhood Trauma Questionnaire for both mothers and children. Descriptive statistics, a Pearson correlation and comparative statistics were used to analyse data.

RESULTS:
The childhood trauma scores of both the women with psychiatric disorders and their children were higher than the control group scores. Compared to the control group, the mothers with psychiatric disorders and their children were found to have less secure attachment styles. It was determined that the mothers and children with insecure attachment were more likely to have been abused.

CONCLUSION:
These results point to a relationship between trauma in childhood and attachment style. They also suggest that this relationship may undergo intergenerational transfer.

RELEVANCE TO CLINICAL PRACTICE:
This study contributes to the existing literature on the relationship between childhood traumas and attachment. Psychiatric nurses should focus not only on psychiatric disorders but also on the difficulties a patient faces regarding being a parent.

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