Bibliotek

Caregivers of older adults provide a wide range of informal supports and services that enable older adults to continue living in the community. This study describes the use of a multicomponent intervention combined with a person-centered approach to assist caregivers of older adults in the community. Four hundred and eighteen caregiver and care recipient dyads participated in this study and their outcomes related to burden, depression, well-being, and care recipient functional status were evaluated. The findings suggest that adult child and spousal caregivers experience burden differently. Programs designed to support caregivers must tailor services to the unique needs of adult child and spousal caregivers.

To purchase or authenticate to the full-text of this article, please visit this link: http://dx.doi.org/10.1111/j.1748-3743.2007.00092.x Byline: Henrik Eriksson, Jonas Sandberg Keywords: caring; gender; informal care; nursing home Abstract: Objectives. The aim of this study is to describe, from a gender identity perspective, the experiences of older men involved in the process of caring for a partner at home and the placement into a nursing home. Background. Few studies have paid attention to the importance of gender when considering the social experiences of older men providing care for an ill spouse and finally placing a partner in a nursing home. Further understanding is much needed of how older men experience the process of caring for a spouse from a gender identity perspective. Design. A qualitative constructivist approach was adopted for this study. Participants. Data consists of interviews with seven men that have been informal carers and experienced the placement of their wife in a nursing home. Methods. Interviews were analysed with a constructivist approach. Results. The results indicate that men go through two transitions in their gender identity during the caregiving process and placement. From the mutual loving relationship of being a loving husband, the social responsibility of daily care of their wives changes the situation into that of being a caring husband, and finally with the move to a nursing home there is a transition from intimate care to a relationship based on friendship. Conclusions. The results show that older caregiving men undergo a process involving a reconstruction of gender identity. To formally recognize men's caring activities and to make them sustainable, we believe that men in an informal caring relationship need support. Relevance to clinical practice. Nurses need to recognize the identity struggles resulting in sadness and suffering that are related to changes in men's lives during the caregiving process. Understanding the dynamics and changes that occur when men take on a caring task is important for the development of their role as carers. Article History: Submitted for publication: 21 November 2006 Accepted for publication: 25 June 2007 Article note: Henrik Eriksson, Department of Caring and Public Health Sciences, Malardalen University, Box 325, 631 05, Eskilstuna, Sweden, Telephone: +46 16 153747, E-mail: henrik.eriksson@mdh.se

Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment. In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving

Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment. In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving

OBJECTIVE:
To review evidence of trauma and exile-related mental health in young refugees from the Middle East.

METHOD:
A review of four empirical studies: i) a qualitative study of 11 children from torture surviving families, ii) a cohort study of 311 3-15-year-old asylum-seeking children, iii) a qualitative study of 14 members of torture surviving families and iv) a follow-up study of 131 11-23-year-old refugees.

RESULTS:
The reactions of the children were not necessarily post-traumatic stress disorder specific. Seventy-seven per cent suffered from anxiety, sleep disturbance and/or depressed mood at arrival. Sleep disturbance (prevalence 34%) was primarily predicted by a family history of violence. At follow-up, 25.9% suffered from clinically relevant psychological symptoms. Traumatic experiences before arrival and stressful events in exile predicted internalizing behaviour, witnessing violence and frequent school changes in exile predicted externalizing behaviour. School participation, Danish friends, language proficiency and mother's education predicted less long-term psychological problems.

CONCLUSION:
Psychological problems are frequent in refugee children, but the extents are reduced over time in exile. Traumatic experience before arrival is most important for the short-term reaction of the children while aspects of life in exile are important for the children's ability to recover from early traumatization.

Although different types of childhood trauma have many common characteristics and mental health outcomes, traumatic loss in children and adolescents has a number of distinctive features. Most importantly, youth who experience a traumatic loss may develop childhood traumatic grief (CTG), which is the encroachment of trauma symptoms on the grieving process and prevents the child from negotiating the typical steps associated with normal bereavement. This article discusses the distinctive features of CTG, how it is different from normal bereavement, how this condition is assessed, and promising treatments for children who experience a traumatic loss.

Traveller information designed to fulfil needs and expectations of individual travellers is a key factor in improving access for older people and people with disabilities to public transport. The overall aim of this thesis is to contribute to the knowledge of user and provider perspectives on the provision of traveller information for older people and people with disabilities in public transport with a focus on use and provision of such traveller information through online traveller information services. The research work is based on perceptions of older people and people with disabilities, together with experts' views on the implementation process. Both qualitative methods (interviews, focus group interviews, group discussions, workshops) and quantitative methods (questionnaires) were used. The substantial influence on the travel of older people and people with disabilities of use of online traveller information services is the empowerment of those of the older travellers and travellers with disabilities that are anxious and insecure before a journey. Through better access of traveller information offered by online traveller information services these travellers can find what they need to build their confidence before a journey and subsequently be supported in their roles as travellers. That is, when they do travel in public transport they want to be able to do so safely and with confidence; they do not necessarily want to increase the number of journeys they undertake. Thus, theoretically the concept of motility has higher relevance for this particular group of travellers than the concept of mobility. The exploration of the traveller information content shows that even though the need to plan and prepare for a journey seems to be equally important for the whole group of older people and people with disabilities as it is for subgroups based on functional limitations, the importance and the intended use of the traveller information differ between groups as the focus shifts from comfort information on an aggregated level to an increasing importance of accessibility information for subgroups. Both the comfort information and the absolute information enable assessment of the effort required to carry through a journey. This is decisive for the choice to travel, but the traveller information focused on comfort relates more to the individual choice to travel while absolute traveller information enables the traveller to assess whether travel is possible at all. Finally, to be accessed the traveller information needed by older people and people with disabilities need to be implemented. The inertia of the implementation process was explored through conflicts of interest that can help forward barriers in the implementation process. The findings point to there being a verbal problem in policies, legislation and guidelines that leave room for interpretation of the necessity of implementation of measures like traveller information needed by older people and people with disabilities. Finally this thesis carries implications for further research within all three areas that have been researched

Abstract
OBJECTIVE:
To examine the potential efficacy and specific timing of treatment response of individual child and parent trauma-focused cognitive-behavioral therapy for childhood traumatic grief (CTG), a condition in which trauma symptoms impinge on the child's ability to successfully address the normal tasks of grieving.
METHOD:
Twenty-two children and their primary caretakers received a manual-based 16-week treatment with sequential trauma- and grief-focused interventions.
RESULTS:
Children experienced significant improvements in CTG, posttraumatic stress disorder (PTSD), depressive, anxiety, and behavioral problems, with PTSD symptoms improving only during the trauma-focused treatment components and CTG improving during both trauma- and grief-focused components. Participating parents also experienced significant improvement in PTSD and depressive symptoms.
CONCLUSIONS:
The timing of improvements in CTG and PTSD symptoms lends support to providing sequential trauma- and grief-focused interventions and to the concept that CTG is related to but distinct from PTSD. The results also suggest the benefit of individual treatment for CTG and for including parents in the treatment of CTG. Randomized, controlled trials are needed to further test the efficacy of this treatment model.

The purpose of this study was to determine whether Learning Sobriety Together, a treatment for substance abuse that combines behavioral couples therapy and individual counseling, had comparable secondary benefits on the internalizing and externalizing behaviors of adolescent versus preadolescent siblings living in homes with their alcoholic fathers (N = 131) and their non-substance-abusing mothers. During a 17-month assessment period, the association between parents' functioning (i.e., fathers' drinking as determined by percentage of days abstinent and parents' dyadic adjustment) and children's adjustment (as rated by mothers, fathers, and children's teachers) was stronger for preadolescents than for their adolescent siblings, particularly in terms of children's externalizing behaviors. Interventions that reduce paternal drinking and improve couple functioning may serve as an important preventative intervention for preadolescents in these homes, whereas adolescents may need more intensive interventions to address internalizing and externalizing symptoms.

The focus of this study was whether couples-based treatment for substance abuse had comparable secondary benefits on the internalizing and externalizing behaviors of adolescent versus child siblings living in their homes. Couples took part in a couples-based treatment for substance abuse that combines Behavioral Couples Therapy and individual counseling (i.e., Learning Sobriety Together). During a 17-month assessment period, the relationship between parents' functioning (i.e., fathers' drug use as determined by percent days abstinent and parents' dyadic adjustment) as rated by mothers, fathers, and children's teachers and internalizing behavior (as rated by mothers' only) was stronger for children than their adolescent siblings, particularly in terms of children's externalizing behaviors. Interventions that reduce paternal drug use and improve couple functioning may reduce internalizing and externalizing symptoms for children in their homes; however, adolescents may need more intensive interventions to address internalizing and externalizing symptoms.

Keywords: Children of drug abusers, Couples therapy

This is the authoritative guide to conducting trauma-focused cognitive-behavioral therapy (TF-CBT), a systematic, evidence-based treatment for traumatized children and their families. Provided is a comprehensive framework for assessing posttraumatic stress disorder, depression, anxiety, and other symptoms; developing a flexible, individualized treatment plan; and working collaboratively with children and parents to build core skills in such areas as affect regulation and safety. Specific guidance is offered for responding to different types of traumatic events, with an entire section devoted to grief-focused components. Useful appendices feature resources, reproducible handouts, and information on obtaining additional training. TF-CBT has been nationally recognized as an exemplary evidence-based program.

OBJECTIVE:
Knowledge of factors associated with treatment dropout and missed appointments in adults with attention-deficit/hyperactivity disorder (ADHD) is very limited. On the basis of proposed hypotheses that past behavior patterns are more predictive of current behaviors of treatment dropout and missed appointments than are sociodemographic and clinical characteristics, we examined the associations of sociodemographic variables, clinical variables, risk-taking behavior, educational and occupational instability, and behaviors during mandatory schooling with the primary outcome measures of treatment dropout and missed appointments.

METHOD:
In a naturalistic cohort study of 151 adult outpatients with ADHD initiating assessment in a Danish ADHD unit from September 1, 2010, to September 1, 2011, the Adult ADHD Self-Report Scale v1.1 symptom checklist (ASRS) and a thorough clinical interview were used to assess ADHD according to DSM-IV-TR criteria. Stepwise logistic regression analysis was used to estimate reported associations.

RESULTS:
A total of 27% of patients dropped out of treatment and a total of 42% had ≥ 3 missed appointments during treatment. Mood and anxiety disorders significantly lowered the odds of treatment dropout (odds ratio [OR] = 0.18; 95% confidence interval [CI], 0.05-0.65), whereas having started but not completed 2 or more educational programs apart from mandatory schooling significantly increased the odds of dropout (OR = 3.01; 95% CI, 1.32-6.89). Variables significantly associated with most missed appointments were low educational level (OR = 2.19; 95% CI, 1.12-4.31), 3 or more employments of less than 3 months' duration (OR = 2.86; 95% CI, 1.30-6.28), and having skipped class often/very often during mandatory schooling (OR = 2.65; 95% CI, 1.29-5.43). Additionally, the predominantly inattentive ADHD (ADHD-I) subtype lowered the odds of missed appointments (OR = 0.17; 95% CI, 0.05-0.62).

CONCLUSION:
Our results suggest that past behavior in terms of highest dropout rates in the educational and occupational systems and highest rates of skipping class during mandatory schooling is equally associated with current behavior of treatment dropout and missed appointments as are sociodemographic and clinical factors.

OBJECTIVES: To describe the burden experienced by family caregivers of older adults with depression and to examine the positive effects on caregivers of treating late-life depression.

DESIGN: Two-phase treatment study for major depressive disorder (MDD) that included 6 weeks of open treatment with antidepressant medication for all older patients followed by 16 weeks of randomized treatment for patients who were partial responders, comparing a combination of medication and interpersonal psychotherapy with medication alone.

SETTING: Primary care and university late-life mental health research clinic.

PARTICIPANTS: Adults aged 60 and older participating in a randomized trial for treatment of MDD who enrolled in a family caregiver study and their caregiver (N=244 dyads).

MEASUREMENTS: Improvement in patient symptoms during open treatment (lower scores on the Hamilton Rating Scale for Depression (HRSD)) and remission of depression during randomized treatment (3 consecutive weekly HRSD scores of ≤7) were examined as predictors of lower general caregiver burden and burden specific to patient depression.

RESULTS: Caregivers reported a moderate to high level of general caregiver burden on average. Change in patient depression during open treatment was associated with significantly decreased depression-specific burden (β=−0.22, P=.001) and a trend toward lower general burden (β=−0.08, P=.08). Caregivers of patients who remitted showed significantly decreased depression-specific burden (F (1,76)=4.27, P=.04).

CONCLUSION: Treatment of late-life depression has benefits that extend to the family members on whom patients depend. Caregiver education and support may strengthen these effects.

Describes the case of a 28-yr-old woman whose 6-yr-old son was diagnosed with attention deficit hyperactivity disorder (ADHD). Behavioral parent training (BPT) was recommended for the mother, followed by medication for the child. However, during BPT the mother was also diagnosed with ADHD. The mother was evaluated using a double-blind procedure with placebo and methylphenidate. The ability of the mother to monitor and manage her son's behavior was assessed using a self-monitoring form and daily interviews. Methylphenidate improved the mother's ability to manage her son's behavior consistently and reduced the severity of her other ADHD symptoms, including fidgety and impulsive behavior. The mother's perceptions of her parenting skills also improved. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Abstract
OBJECTIVES:
This study evaluated the effectiveness of Cognitive Behavioral Writing Therapy (CBWT) in 23 children (age 8-18 years) in the Netherlands, who experienced a range of single and recurrent traumatic experiences. CBWT uses exposure, cognitive restructuring and social sharing.
METHODS:
At pre-test, post-test and follow-up, post-traumatic stress disorder (PTSD) symptoms, depressive symptoms, trauma-related cognitions and general behavioural problems were assessed.
RESULTS:
At post-test there was a significant reduction of all symptoms, and this effect was maintained at 6 months follow-up. The mean amount of treatment sessions needed was 5.5.
CONCLUSIONS:
This study shows that short-term CBWT is a potentially effective intervention for clinically referred traumatized children. There is now a clear need of establishing the effectiveness of CBWT in a randomized, controlled trial.
PRACTICE IMPLICATION:
This first study indicates CBWT is a promising treatment, which can easily be used in clinical practice.

This effectiveness study presents the results of a 1-year follow-up of a randomized controlled trial of Parent Management Training. Families of 112 Norwegian girls and boys with clinic-level conduct problems participated, and 75 (67%) families were retained at follow-up. Children ranged in age from 4 to 12 at intake (M　=　8.44). Families randomized to the control group received an active treatment alternative as would be normally offered by participating agencies. Multi-informant, multisetting outcome measures were collected and results from both intention-to-treat and treatment-on-the-treated analyses are presented. In two separate indirect effects models, assignment to Parent Management Training-the Oregon model predicted greater effective discipline and family cohesion at postassessment, which in turn predicted improvements in several child domains at follow-up.

Projektets avsåg att pröva ett anknytningsbaserat föräldrastödsprogram,
Trygghetscirkeln (COS-P), vars mål är att hjälpa föräldrar att nå fördjupad förståelse för
barns behov av känslomässigt stöd från sina föräldrar.
Prövningen av Trygghetscirkeln som komplement till övrig behandling genomfördes på
tre geografiskt spridda behandlingsenheter för familjer med små barn i Sverige. Efter
gruppledarutbildning genomfördes en RCT-studie där 52 föräldrar i åldern 18-44 år
(M=30 år) med barn under 58 månader (M=15 mån) randomiserades till att antingen få
behandling enligt planerad form (TAU), n=24 föräldrar, eller få behandling plus ett
tillskott av 8 ggr Trygghetscirkel i grupp (COS), n=28 föräldrar. Vid baslinjen (T1) fyllde
föräldrarna i självskattningsformulär avseende nivå av egen ångest (STAI), grad av
depressivitet (CES-D), grad av reflekterande förmåga (PRFQ) och nivå av föräldrastress
(SPSQ). Föräldrarna fyllde vidare i en anknytningsdagbok (AD). En diagnostisk DC:0-3R
profil sammanställdes utifrån journaldata, samspelet mellan förälder och barn
bedömdes kvalitativt (EAS) och en semistrukturerad djupintervju om förälderns inre
bild av sig själv och sitt barn (WMCI) värderades. Nya mätningar gjordes därefter vid sex
månader (T2) och 12 månader (T3) efter baslinjemätningen, med undantag för AD, den
diagnostiska profilen och djupintervjun som enbart gjordes vid T1 och T3. Efter
genomförda föräldragrupper utvärderades Trygghetscirkeln med hjälp av särskilda
frågeformulär riktade till föräldrar och till gruppledare. Som avslutning av projektet
gjordes öppna intervjuer dels med personal på respektive behandlingsenhet och dels
med ett bekvämlighetsurval av föräldrar.
Resultaten gav vid handen att både behandlare och föräldrar var mycket nöjda med
Trygghetscirkeln, som var stimulerande, gav en fördjupad kunskap och hjälpte
föräldrarna i sin föräldraroll. I COS-gruppen förändrades samspelskvalitet och framför
allt den inre bilden av föräldrarollen och av barnet signifikant mer än i TAU-gruppen. I
hela gruppen uppmättes över tid sänkt föräldrastress, reduktion av stressfaktorer i
omgivningen, bättre föräldra-barnrelation och mer åldersadekvat socioemotionell
utvecklingsnivå hos barnen. Den skattade nivån av egen psykiska hälsa, eller
självskattad reflekterande förmåga förbättrades emellertid inte i någon av grupperna.
Vid uppföljningen våren 2015 visade det sig att Trygghetscirkeln integrerats som en
väsentlig del i verksamheternas behandlingsutbud.
Rapporten lyfter fram att genomsnittsåldern för barnen i den undersökta gruppen var
låg, vilket ledde till en låg förekomst av individuella barnkliniska symtom. Problemen
var i huvudsak koncentrerade till föräldrafunktionen. Föräldrarna hade i allmänhet en
etablerad behandlingskontakt innan de bjöds in till studien vilket troligen medförde att
upplevelsen av den egna psykiska hälsa redan hade stabiliserats. Däremot förändrades
stress, samspelskvalitet och den inre bilden långsammare, vilket ledde till en mätbar
positiv förändring först vid uppföljningen efter 12 månader. Denna förändring var mer
tydlig hos COS-gruppen än hos TAU-gruppen.
7
Slutsatsen är att Trygghetscirkeln är ett föräldraprogram som uppskattas stort av både
föräldrar och gruppledare. Då Trygghetscirkeln syftar till ökad förståelse för hur det
egna förhållningssättet påverkar föräldrabeteendet, aktualiseras förälderns egna hinder
och svårigheter i mötet med materialet och gruppdiskussionerna. Detta stärker
betydelsen av erfarna gruppledare och att det sammanhang inom vilket
Trygghetscirkeln erbjuds får möjlighet att fungera som en trygg bas. Vi kan inte uttala
oss om Trygghetscirkeln som en generellt preventiv insats till alla föräldrar men vill
rekommendera den för riktade insatser till barn med identifierade risker för psykisk
ohälsa eller utvecklingsavvikelser samt som komplement till annan behandling där
större behov av barnkliniska insatser föreligger.

Akademisk avhandling.

Det övergripande syftet med avhandlingen är att beskriva långvarigt sjuka barns upplevelser av tröst samt vilka och vad som tröstar barn, föräldrar och en sjuksköterska. Avhandlingen omfattar fyra delstudier. Långvarigt sjuka barn, föräldrar och en sjuksköterska har intervjuats och barnen har ritat teckningar.I delstudie I var syftet att undersöka vad barn med långvariga sjukdomar berättar muntligt och i teckningar om sina upplevelser av att bli tröstade. Sju barn i åldern 4-10 år, med olika långvariga sjukdomar, beskrev under intervju sina upplevelser av tröst och ritade teckningar. Intervjuerna analyserades med innehållsanalys, vilket utmynnade i fyra teman: att vara fysiskt nära sin familj, att känna sig trygg och säker, att sjuksköterskor finns till hands för barnen och att barnen finns till hands för sina föräldrar och syskon. Resultatet visar att barnen litade på sjuksköterskors kunskap och yrkeskunnande, vilket var en förutsättning för att kunna känna sig trygg och hemma på sjukhus. Att vara nära sin familj upplevdes än mer betydelsefullt för att uppleva tröst.

I delstudie II var syftet att beskriva föräldrars upplevelser av vad som tröstar dem när deras barn insjuknat i cancersjukdom. Nio föräldrar till barn i åldern 3-9 år, som var inlagda på vårdavdelning och hade genomgått sin första behandling, intervjuades. Innehållsanalys utmynnade i fem teman: att uppleva tröst genom att vara nära sitt barn, att uppleva tröst genom barnets styrka, att uppleva tröst genom att känna sig hemma på vårdavdelningen, att uppleva tröst genom att vara en familj och genom att vara hemma samt att uppleva tröst genom stöd från sociala nätverk. I kommunion, en djup känsla av gemenskap med barnet och personer i sociala nätverk, upplevde föräldrarna en ny vardag som kännetecknades av att känna sig trygg i livet trots alla svårigheter och de upplevde stunder av hopp.

I delstudie III var syftet att beskriva upplevelser av vad som tröstar ett allvarligt sjukt och senare döende barn, berättat av barnet, hans mamma och hans sjuksköterska. Barnet ritade teckningar. Fältanteckningar, teckningar och intervjuer analyserades med innehållsanalys, vilket utmynnade i fyra teman: att uttrycka känslor och bli redo för tröst, att vara i kommunion, att skifta perspektiv och att finna tröst genom att vara hemma. Resultatet visar att tröst för det svårt sjuka, senare döende barnet, innebar att barnet kunde uttrycka sina känslor som barnet ville, att familjen fanns nära och var involverade i omvårdnaden av barnet, att barnet kunde vårdas hemma och att barnet upplevde en förtroendefull relation med sin sjuksköterska.

I delstudie IV var syftet att beskriva vem och vad som tröstar föräldrar, syskon, sjuksköterska och andra personer som tröstade ett svårt sjukt och senare döende barn, beskrivet av mamman och barnets sjuksköterska. Intervjuer från delstudie II analyserades med innehållsanalys och utmynnade i tio teman. Resultatet visar en bild av samverkande nätverk som kan finnas runt ett svårt sjukt barn. Den svåra situationen innebar att barnets familj bar en tung börda, men omgivna av ett tröstande nätverk som de kunde luta sig mot och dela lidande och ansvar med, kunde de finna tröst och trösta varandra.

Resultatet i avhandlingen visar att de långvarigt sjuka barnen och föräldrarna fann tröst i att kunna dela lidande med varandra. Föräldrar och sjuksköterska fann tröst i att kunna dela lidandet och ansvaret med personer i sina sociala nätverk. Modellen om tröst (Norberg m fl, 2001) kunde användas för att ge struktur till diskussionen.

Bakgrund: Att ha en sjuk närstående som bor på ett särskilt boende
för äldre påverkar hela familjen. Familjemedlemmarna kan uppleva
känslor av saknad, skuld, maktlöshet och sorg. Det finns därför ett
behov av att utvidga omvårdnaden till att innefatta hela familjen som
ett system för att minska ohälsa hos familjer. Detta kan ske genom
familjecentrerade interventioner. Ett exempel på en familjecentrerad
intervention är hälsostödjande familjesamtal (FamHC). Det är en
vårdhandling med focus på familjens styrkor, resurser och relationer
inom familjen. Det finns begränsad kunskap om dessa
familjeinterventioner i kontexten vård och omsorg av äldre.
Syftet: Syftet med avhandlingen är att ur ett familje- och
sjuksköterskeperspektiv studera upplevelser, responser och effekter
av sjuksköterskeledda hälsostödjande familjesamtal med närstående
som har en familjemedlem boende på ett särskilt boende för äldre.
Metoder: Denna avhandling är baserad på en intervention med
FamHC genomförd vid tre särskilda boenden för äldre i norra Sverige.
Samtalens struktur är tre på varandra följande samtal varannan vecka
med skilda fokus och avslutas med ett avslutande brev. Avhandlingen
består av fyra delstudier. I studie I-II användes semistrukturerade
gruppintervjuer med närstående som analyserades med kvalitativ
innehållsanalys. I studie III användes mixad metod. Kvalitativa
resultat från intervjuer och kvantitativa resultat från instrumenten
SWED-QUAL och FHI, analyserades parallellt samt integrerades
därefter. I Studie IV intervjuades tre sjuksköterskor med
semistrukturerade individuella intervjuer. Sjuksköterskorna skrev
även dagboksanteckningar. Intervjuerna och dagböckerna
analyserades med kvalitativ innehållsanalys.
Resultat: Resultaten från studie I visar att de närstående en månad
efter deltagandet i FamHC upplevde en lindring av sitt dåliga samvete
då de krav som familjerna ställer på sig själva minskat. Vid samtalen
fick de närstående bekräftelse på att de gjorde så gott de kunde.
Genom att dela sina föreställningar med varandra genom berättelser
skapades en ökad förståelse för hela familjens upplevelse av
situationen. Studie II visar att sex månader efter samtalsseriens
avslutande upplevde familjen deltagandet i FamHC som ett delande i
en dialog med en läkande kraft. Delandet upplevdes bekräftande
vilket gjorde att de närstående upplevde samtalen som trösterika.
Studie III visar att de närståendes emotionella välbefinnande hade
förbättrats sex månader efter att ha deltagit i FamHC. Studien visar
på förbättrad kommunikation och relationer samt förbättrat
samarbete inom familjen. Studie IV visar att sjuksköterskorna
upplevde att FamHC var en tillämpbar omvårdnadsåtgärd i arbetet
med familjer. Det gav en förbättrad förståelse av familjens situation
och förbättrade relationen med närstående.
Konklusion: Den övergripande slutsatsen från resultaten i
delstudierna är att genom att delta i FamHC blev familjerna tröstade.
Samtalen skapade en arena för de närstående att berätta samt att
lyssna till varandras berättelser. Det gavs utrymme att gråta och sörja
över sin situation över att ha en sjuk familjemedlem på ett särskilt
boende. Samtalen medförde reviderade föreställningar bland
närstående och sjuksköterskorna samt en ökad förståelse och ett
bättre samarbete inom familjen och en ökad känsla av välbefinnande
hos de närstående. Hälsostödjande familjesamtal kan därmed föreslås
vara ett användbart verktyg för sjuksköterskor i deras arbete med
närstående inom kontexten särskilda boenden för äldre personer.
v
Nyckelord:
Hälsostödjande familjesamtal, Familjecentrerad omvårdnad, FamHC,
Familjeomvårdnad, Omvårdnad, Särskilt boende för äldre.

Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities.

Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities.

Abstract
BACKGROUND:
Only a few intervention studies aiming to change high-risk drinking behavior have involved university students with heredity for alcohol problems. This study evaluated the effects after 2 years on drinking patterns and coping behavior of intervention programs for students with parents with alcohol problems.
METHOD:
In total, 82 university students (57 women and 25 men, average age 25 years) with at least 1 parent with alcohol problems were included in the study. The students were randomly assigned to 1 of the 3 programs: (i) alcohol intervention program, (ii) coping intervention program, or (iii) combination program. All the 3 intervention programs were manual based and individually implemented during 2 2-hour sessions, 4 weeks apart. Before the participants were randomly assigned, all were subjected to an individual baseline assessment. This assessment contained both a face-to-face interview and 6 self-completion questionnaires: the Alcohol Use Disorders Identification Test, estimated Blood Alcohol Concentration, Short Index of Problems, the Symptom Checklist-90, Coping with Parents' Abuse Questionnaire, and The Interview Schedule for Social Interaction (ISSI). Follow-up interviews were conducted after 1 and 2 years, respectively. The results after 1 year have previously been reported.
RESULTS:
All participants finished the baseline assessment, accepted and completed the intervention. Ninety-five percent of the students completed the 24-month follow-up assessment. Only the group receiving the combination program continued to improve their drinking pattern significantly (p < 0.05) from the 12-month follow-up to the 24-month follow-up. The improvements in this group were significantly better than in the other 2 groups. The group receiving only alcohol intervention remained at the level of improvement achieved at the 12-month follow-up. The improvements in coping behavior achieved at the 12-month follow-up remained at the 24-month follow-up for all the 3 groups, i.e., regardless of intervention program.
CONCLUSION:
Positive effects of alcohol intervention between 1 and 2 years were found only in the combined intervention group, contrary to the 1-year results with effects of alcohol intervention with or without a combination with coping intervention.

BACKGROUND:
Only a few intervention studies aiming to change high-risk drinking behavior have involved university students with heredity for alcohol problems. This study evaluated the effects after 2 years on drinking patterns and coping behavior of intervention programs for students with parents with alcohol problems.
METHOD:
In total, 82 university students (57 women and 25 men, average age 25 years) with at least 1 parent with alcohol problems were included in the study. The students were randomly assigned to 1 of the 3 programs: (i) alcohol intervention program, (ii) coping intervention program, or (iii) combination program. All the 3 intervention programs were manual based and individually implemented during 2 2-hour sessions, 4 weeks apart. Before the participants were randomly assigned, all were subjected to an individual baseline assessment. This assessment contained both a face-to-face interview and 6 self-completion questionnaires: the Alcohol Use Disorders Identification Test, estimated Blood Alcohol Concentration, Short Index of Problems, the Symptom Checklist-90, Coping with Parents' Abuse Questionnaire, and The Interview Schedule for Social Interaction (ISSI). Follow-up interviews were conducted after 1 and 2 years, respectively. The results after 1 year have previously been reported.
RESULTS:
All participants finished the baseline assessment, accepted and completed the intervention. Ninety-five percent of the students completed the 24-month follow-up assessment. Only the group receiving the combination program continued to improve their drinking pattern significantly (p < 0.05) from the 12-month follow-up to the 24-month follow-up. The improvements in this group were significantly better than in the other 2 groups. The group receiving only alcohol intervention remained at the level of improvement achieved at the 12-month follow-up. The improvements in coping behavior achieved at the 12-month follow-up remained at the 24-month follow-up for all the 3 groups, i.e., regardless of intervention program.
CONCLUSION:
Positive effects of alcohol intervention between 1 and 2 years were found only in the combined intervention group, contrary to the 1-year results with effects of alcohol intervention with or without a combination with coping intervention.

Psykisk ohälsa är ett allvarligt hälsoproblem bland barn och ungdomar och därmed ett angeläget område för samhällsinsatser. Det mesta av de resurser som samhället satsar på barn och ungdomar ges i form av generella insatser. Mödra- och barnhälsovård, förskoleverksamhet, skola, skolhälsovård, skolbarnsomsorg och ungdomsmottagningar är exempel på vanliga verksamheter. Andra samhällsinsatser (t.ex. insatser inom socialtjänsten och barn- och ungdomspsykiatrin) riktas enbart till barn och ungdomar som på olika sätt far illa eller behöver särskilt stöd. Sådana insatser kallas selektiva.

Även om barns och ungdomars psykiska hälsa och goda uppväxtvillkor är högt prioriterade områden är samhällets resurser begränsade. Det är därför viktigt att tillgängliga resurser används så väl som möjligt, dvs. att man lägger pengarna på insatser som har så bra effekter som möjligt i förhållande till vad de kostar. Syftet med denna rapport är att beskriva vikten av att ha ett sektorsövergripande och långsiktigt perspektiv när man på olika nivåer inom kommuner, landsting och stat ska prioritera mellan insatser som påverkar barns och ungdomars psykiska hälsa.

Barns och ungdomars psykiska hälsa påverkas av såväl individuella egenskaper som av faktorer i uppväxtmiljön. Generella insatser av hög kvalitet kan sannolikt förebygga och minska psykisk ohälsa hos barn och ungdomar. Eftersom de generella insatsernas innehåll, organisation och resurser har betydelse för hur barnen mår påverkar de troligen även omfattningen av de selektiva insatser som en del barn och ungdomar kan komma att behöva under sin uppväxt och längre fram i livet. Det är troligt att det fanns ett samband mellan nedskärningarna inom förskoleverksamheten, skolbarnsomsorgen och skolan under 1990-talet och den samtidiga ökningen av antalet besök inom barn- och ungdomspsykiatrin. Samtidigt kan detta vara ett tecken på att samverkan mellan t.ex. skolan och barn- och ungdomspsykiatrin inte har fungerat tillfredsställande när det gäller att ge förebyggande stöd till barn efter deras behov utifrån olika kompetenser.

Den internationella litteraturgenomgång som gjorts till rapporten visar att det finns ett visst forskningsstöd för att exempelvis föräldrastöd, personal- och lärartäthet i förskolan och skolan, särskilda pedagogiska insatser samt lärarnas kompetens har betydelse för barns och ungdomars skolprestationer och psykiska hälsa. Det bör understrykas att detta inte innebär att man säkert vet att övriga insatser saknar effekt.

Det saknas i stor utsträckning svensk forskning om effekter av generella insatser för barn och ungdomar. Bristen på relevanta studier medför svårigheter när man ska utvärdera olika insatsers samhällsekonomiska konsekvenser. Mot bakgrund av hur stor betydelse de generella verksamheterna har för barns och ungdomars uppväxtmiljö är det viktigt att kunskapen om deras effekter på barns psykiska hälsa ökar. För att detta ska vara möjligt måste man, förutom att intensifiera forskningen, lokalt satsa på att dokumentera och följa upp de insatser som ges till barn och ungdomar. Detta är ett viktigt metodutvecklingsverktyg och en grund för att utveckla beprövad erfarenhet som kan spridas, diskuteras och jämföras med andra resultat.

I rapporten presenteras en samhällsekonomisk modell där kostnaderna för generella insatser ställs mot insatsernas effekter på barns och ungdomars psykiska hälsa och de samhällsekonomiska vinster som dessa i sin tur ger upphov till. Modellen bygger på ett tänkesätt för prioriteringar som inte bara tar hänsyn till den berörda huvudmannens kostnader för en viss insats, utan också till hur kostnaderna påverkas i andra samhällssektorer och på längre sikt.

För att göra en samhällsekonomisk analys inom detta område behöver man veta vad olika tänkbara insatser kostar och vilka effekter de har på barns och ungdomars psykiska hälsa. Man behöver också veta hur detta påverkar samhällets kostnader för andra insatser på kort och lång sikt. I rapporten ges exempel på vad olika generella insatser för barn och ungdomar kostar. Dessa kostnader jämförs sedan dels med kostnader för olika selektiva insatser för barn och ungdomar, dels med exempel på samhällets kostnader för psykisk ohälsa hos vuxna personer. De beräkningar som presenteras ska ses som exempel på en analysmetod och de är inte i första hand avsedda att användas som underlag för jämförelser och val mellan olika tänkbara insatser.

Samhällets kostnader kan bli relativt höga redan på förhållandevis kort sikt om psykiska problem inte förebyggs och motverkas i ett tidigt skede. Kostnaderna för en familjehemsplacering under två år uppgår till knappt 800 000 kronor och för en HVBplacering under totalt ett år till ca 1,1 miljoner kronor. Om dessa insatser inte visar sig tillräckliga blir kostnaderna ännu högre. I rapporten ges även exempel på vad kostnaderna för psykisk ohälsa kan uppgå till om den kvarstår under vuxenlivet. Om en person utvecklar psykosociala arbetshinder kan samhällskostnaderna uppgå till omkring 2 miljoner kronor under en trettioårsperiod. Även kostnaderna för psykiska sjukdomstillstånd kan vara höga, ca 7–9 miljoner kronor enligt det exempel som valts. För en enda missbrukare kan samhällets kostnader uppgå till omkring 12–15 miljoner kronor under en trettioårsperiod beroende på hur mycket kostnaderna diskonteras.

En rimlig hypotes är att det finns en samhällsekonomisk potential i att satsa på förebyggande arbete inom de generella verksamheterna för barn och ungdomar, inte minst mot bakgrund av att de framtida selektiva insatser som kan komma att behövas är så kostsamma. Kunskapen är dock inte tillräcklig för att man med säkerhet ska kunna säga att en viss insats innebär en framtida ekonomisk vinst. För att ändå få en uppfattning kan man räkna ut hur många barn som kan få en viss insats för den kostnad som sparas in om ett enda fall av psykosociala arbetshinder, psykisk sjukdom eller missbruk förebyggs. Om man t.ex. förebygger en enda persons missbruk under vuxenlivet, kan man för samma kostnad ge stödjande utbildning som syftar till att utveckla föräldrarnas kompetens och sätt att bemöta sina barn till ca 3 400 eller 6 900 barns föräldrar beroende på hur kostnaderna diskonteras. Den här typen av utbildningar har visat sig effektiv när det gäller att förebygga utåtriktade psykiska problem hos barn och ungdomar. Det förefaller inte orimligt att man genom en så omfattande utbildningsinsats kan förhindra att minst ett av barnen kommer att leva som missbrukare. Det är vad som krävs för att insatsen ska vara samhällsekonomiskt lönsam på lång sikt.

Samhällsekonomiska analyser behöver kompletteras med en beskrivning av de fördelningseffekter som insatsen leder till. Dessa kan vara av två slag. En del handlar om att beskriva vilka barn som gynnas av insatsen. Är det de barn som är mest angelägna att nå? Den andra delen handlar om att det är viktigt att beskriva var i samhället som olika kostnader och besparingar uppstår. Vissa samhällssektorer och huvudmän kan få högre respektive lägre kostnader som en följd av insatsen, vilket det är viktigt att vara medveten om eftersom det kan påverka aktörernas incitament för att genomföra olika insatser.

I rapporten illustreras detta med ett räkneexempel som tar fasta på att samhällskostnaderna för en person med psykosociala arbetshinder under 30 år är ungefär lika höga som kostnaderna för att minska klasstorleken i grundskolan för 80 barn under ett år. Om man antar att den förebyggande insatsen kan leda till att ett fall av psykosociala arbetshinder förebyggs går samhället som helhet varken med vinst eller förlust på lång sikt. För de enskilda aktörerna ser dock bilden olika ut. Kommunen har kostnader för genomförandet av insatsen som uppgår till drygt en miljon kronor. Dessa kostnader uppvägs i viss mån av att kommunens kostnader för psykosociala arbetshinder minskar i framtiden. Kommunen har dock ändå en nettokostnad på ca 650 000 kronor. För de övriga aktörerna som påverkas av psykosociala arbetshinder, t.ex. försäkringskassan, innebär däremot insatsen en ren intäkt. Ur ett strikt ekonomiskt perspektiv framstår alltså minskad klasstorl

AIMS AND OBJECTIVES: To explore how spouses of patients with severe chronic
obstructive pulmonary disease experience their role as informal caregiver.
BACKGROUND: Informal caregiver spouses are of pivotal importance in the way that
patients with chronic obstructive pulmonary disease cope with their daily life,
including their opportunity to stay at home and avoid hospitalisations in the
last stages of the disease. However, caregiving is associated with increased
morbidity and mortality among caregivers. Further understanding of the role as an
informal caregiver spouse of patients with severe chronic obstructive pulmonary
disease is needed to develop supportive interventions aimed at reducing the
caregiver burden.
DESIGN: The study had a qualitative exploratory design. The data collection and
analysis were based on framework method. Framework method is a thematic
methodology and consists of five key stages: familiarisation, identifying a
thematic framework, indexing, charting and mapping & interpretation.
METHODS: Three focus groups were conducted in November 2013 with 22 spouses of
patients with severe chronic obstructive pulmonary disease.
RESULTS: Undefined and unpredictable responsibility was found to be the
overarching theme describing the informal caregiver role. Underlying themes were:
being constantly in a state of alertness, social life modified, maintaining
normality, ambivalence in the relationship and a willingness to be involved.
CONCLUSIONS: The informal caregiver spouses experienced ambiguity about
expectations from their private and the health professionals' surroundings. The
informal caregiver spouses wanted to provide meaningful care for their partners,
but sought knowledge and support from the health professionals.
RELEVANCE TO CLINICAL PRACTICE: We recommend that nurses take on the
responsibility for including the informal caregiver spouses in those aspects of
decision-making that involve the common life of the patients and their spouses.

How are the burdens and difficulties of caregiving balanced by the satisfactions experienced? * How do the demands of caregiving change over time and what are the policy and practice implications of such changes? * How is a balance achieved between the needs of the caregiver and the cared-for person? The importance of family (informal) care both in making a reality of community care policies and in helping to sustain the quality of life of people who require support to remain within their homes is beyond doubt. However, whilst a considerable research and practice literature has developed in this area over the last ten years there remains much to learn about caring at both conceptual and practice levels. There is in particular a need to develop more dynamic models which account for the changing nature of care over time and integrates the perspectives of carer, cared-for person and the formal service network. Based on several years research conducted by the authors, Understanding Family Care integrates a number of theories and perspectives in order to provide a more holistic understanding of the needs of carers. Emphasis is placed on providing a balanced picture which recognizes both the burdens and satisfactions of caring, in addition to the coping efforts that carers employ. A new longitudinal model of caring is described and the various stages and processes are explored. Although the focus is primarily on the carer the perspectives of the cared-for person are not ignored and a model is presented which aids the integration of disparate viewpoints. In addition to theoretical and methodological debates, implications for policy and practice are fully explored. Understanding Family Care is recommended reading for practitioners and managers in the health and social services, as well as students of social science, nursing, gerontology and social work.

This article is about emergent self-determination for young children with disabilities in their home environments. The purpose of this study was to better understand family and home characteristics and how they influence the ways in which families can support the development of self-determination for their children with disabilities. Thirty families of young children with disabilities were interviewed, and their homes were systematically observed. Using a grounded theory design, an emergent model was developed that examined family and home context and the influence of context on the strategies that families used to support self-determination. Future research and practice implications of this research for supporting families are discussed.

Since the early 1990s, attention has been focused on the importance of self-determination in the education of students with disabilities. The purpose of this study was to further our understanding of the construct of self-determination by examining the relationship between the Arc's Self-Determination Scale and the American Institutes for Research (AIR) Self-Determination Scale student and educator versions. Using structural equation modeling, we found that the theoretical structure of the Arc's Self-Determination Scale and the AIR Self-Determination–Student Scale was supported by the data, while the proposed theoretical structure of the AIR Self-Determination–Educator Scale was not. The analyses suggested that each of the measures of self-determination was measuring a different aspect of the self-determination construct (i.e., it was not possible to create a higher order factor comprising each of the assessments); thus issues related to the goals of the research and the underlying theoretical perspective of each measure must be considered when determining the most appropriate measure of self-determination in research and practice. Implications and future research directions are discussed.

Trots att anhörigvården synliggjorts under senare år är det fortfarande många anhörigvårdare som inte är kända av kommunen och många som inte söker stöd. För att ta reda på orsaken till ovanstående förhållande har jag djupintervjuat sexton anhörigvårdare. Informationsbrist är en orsak, många vet inte att det finns hjälp att få, vadsom finns eller hurman ansöker. Att det är omständligt, att man inte orkar eller att den som vårdas inte vill ha hjälp från någon utomstående är annat som framkommit. Främst handlar det dock om att man vill klara sig själv. Anhörigvård handlar om två parter, den vårdbehövande och den friske parten – anhörigvårdaren – båda parter måste vara beredda att "öppna upp" hemmet för vårdpersonal för att hjälp i hemmet ska kunna påbörjas. Den personliga integriteten påverkas. Stöd utanför hemmet eller från den egna familjen är följaktligen det som anhörigvårdare främst önskar. Lojalitet mot den närstående gör många gånger att anhörigvårdaren utstår mer än vad som verkar vara rimligt att klara men... " – hur långt sträcker sig egentligen det äktenskapliga löftet? "Anhörigvårdare behöver sökas upp och motiveras till att söka avlösning. Givetvis bör också utbudet anpassas efter vad anhörigvårdarna verkligen efterfrågar." – Vad är då ett bra anhörigstöd? "Kanske inte bara det som erbjuds av det offentliga. När en make/maka drabbas av sjukdom kan den friske parten bli väldigt ensam om alltansvar i hemmet. Att då få hjälp med diverse praktiska vardagsgöromål kan vara ett stöd så gott som något annat. För att tillgodose detta är en utveckling av frivilligarbete liknande "Väntjänst" önskvärd.

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.

Abstract [en]

The overarching aim of this thesis is to gain a deeper understanding of informal carer involvement in health and social care research, from the perspective of informal carers themselves as well as from a researcher perspective.The thesis is comprised of three qualitative studies and one quantitative study. Three studies are from the perspective of informal carers, and one is from the perspective of researchers. The three qualitative studies used qualitative content analysis and discourse psychology, while the quantitative study used descriptive statistics, logistic regression and two different types of factor analysis. The data collection methods varied; in the first and the fourth studies, the data were derived from individual interviews, in the second study participants completed a questionnaire, and in the third study the data were collected from group meetings with carers.The findings showed that carer involvement in research is complex, comprising both benefits and challenges, and demands a high level of engagement from all involved, throughout the research process. The researcher must acknowledge that carers’ motivations for involvement in research vary, and the researcher should adapt their recruitment methods accordingly. It is easy to believe that becoming involved in research is an individual choice, but the findings revealed that only some carer groups choose to become involved in research. The findings also showed that the knowledge brought by carers to the research stretches far beyond their practical experiences of caring. When researchers choose to involve carers in research, their research would benefit greatly if they acknowledged the possibility that they themselves might become relationally and emotionally involved.Successful carer involvement in research therefore encompasses both a meaningful process and a meaningful result. As carers are a heterogeneous group, this places demands on a researcher’s flexibility and creativity to manage the recruitment process and involve a broad cross section of carers. If they fail in this, the research carried out and any interventions developed risk being valid for particular groups of carers and invalid in relation to other carer groups.

Abstract [en]

Many adolescent young caregivers (AYCs) care for a grandparent (GrP) with chronic disease, especially in countries with no or low developed long-term care systems and/or level of awareness of and policy responses to young caregivers. This mixed-methods study aimed at shedding light on the needs and difficulties faced by a sample of 162 adolescents aged 15–17, caring for GrPs, living in Italy (87) and Slovenia (75), respectively. A multiple linear regression model was built for the quantitative data. Qualitative data were content analysed using an open coding process. Italian and Slovenian respondents reported a moderate amount of caring activity and relatively high positive caregiving outcomes. Nevertheless, one out of three AYCs reported health problems due to their caring responsibilities. Compared to their Italian counterparts, Slovenian respondents were supported to a lesser extent by public services. Italian respondents faced communicative and practical problems; Slovenian AYCs experienced mainly emotional discomfort. AYCs from both countries requested emotional and practical support from formal services and family networks. Further, Slovenian AYCs requested emotional support and a personalized learning plan from schoolteachers. Support measures aimed at training AYCs of GrPs on geriatric care are recommended to address specific issues related to ageing and long-term care needs.

Omarbetad version av Medicinsk omvårdnad vid svåra funktionshinder

Syftet med handboken Kvalificerad omvårdnad i vardagen är att sprida kunskap om och förståelse för personer med flerfunktionsnedsättning, som under hela livet har mycket stora vård- och omvårdnadsbehov. Boken vill visa att mycket går att göra för att ge barn, ungdomar och vuxna med flerfunktionsnedsättning möjlighet att leva ett så bra liv som möjligt. Rätten till god vård och omvårdnad gäller i allra högsta grad de som har de allra största behoven.

Abstract
Aims and objectives
The study aim was to explore the use of an Intensive Care Unit (ICU) diary within four different ICUs units in Sweden and thereby contribute to practice guidelines regarding the structure, content and use of an ICU diary.
Background
ICU diaries are used to aid psychological recovery among critical care patients, but differences remain in diary writing both within and across countries. Few studies have focused on the combined views and experiences of ICU patients, family members and nursing staff about the use of ICU diaries.
Design
An instrumental multiple case study design was employed.
Methods
Three focus groups interviews were carried out with 8 former patients and their family members (n = 5) from the research settings. Individual interviews were carried out with 2 patients, a family member and a nurse respectively. Observations, field notes, documentary analysis and conversations with nursing staff were also conducted. Consolidated criteria for reporting qualitative research (COREQ) was followed.
Results
The qualitative findings firstly consisted of a matrix and descriptive text of the four ICU contexts
and current practices. This highlighted that there were similarities regarding the aims and objectives of the diaries. However, differences existed across the case study sites about how the ICU diary was developed and implemented. Namely, the use of photographs and when to commence a diary. Second, a thematic analysis of the qualitative data regarding patients’ and family members’ use of the ICU diary, resulted in four themes: i) the diary was used to take in and fully understand the situation; ii) the diary was an opportunity to assimilate warm, personalised and human care; iii) the diary was used to manage existential issues; and iv) the diary was a tool in daily activities.
Conclusions
Analysis of the instrumental case study data led to the identification of core areas for inclusion in ICU diary practice guidelines. Introduction

Socialstyrelsen har regeringens uppdrag att presentera ett förslag som möjliggör en kontinuerlig nationell uppföljning av anhörigperspektivet inom hälso- och sjukvården och omsorgen samt av det stöd som kommuner och regioner erbjuder anhöriga. Uppdraget handlar om att analysera möjligheterna att inhämta resultat på nationell nivå i syfte att följa anhörigperspektivet och stödet till anhöriga samt att ge förslag på mått anpassade för att kunna följa dessa områden. I denna rapport presenteras förslag på uppföljningsområden hämtade ur den nationella anhörigstrategin samt förslag på mått, nyckeltal och indikatorer.

Denna rapport har tillkommit för att få en förståelse för hur anhörigstöd bedrivs i
Sjuhäradskommunerna och hur anhörigas situation ser ut. Vi har tagit del av både anhörigasoch anhörigkonsulenternas perspektiv för att belysa anhörigfrågan. Studien är finansierad av
FoU Sjuhärad Välfärd som är ett kompetenscentrum för forskning och utveckling inom
kommunernas välfärdsområden. Ägarparter är Högskolan i Borås, Borås Stad samt
kommunerna Bollebygd, Herrljunga, Mark, Svenljunga, Tranemo, Ulricehamn och Vårgårda.
FoU Sjuhärad vill bidra med kunskap som skapar värde för de som bor i Sjuhäradskommunerna och för de som arbetar inom välfärdsområdet. Vår förhoppning är att rapporten
ger ett sådant bidrag men också att kunskapen sprids och är till nytta för policyskapare,
politiker och tjänstemän med intresse för anhörigas situation och anhörigstöd, i andra
kommuner och/eller på andra myndigheter.

Föräldrarkraften är en informativ bok som är oumbärlig för föräldrar till barn med neuropsykiatriska funktionsvariationer. Författaren förklarar olika diagnoser, vad de innebär och vilka problem som är relaterade till dem.Boken är ett stöd för dig som är förälder och som tvivlar på om du som förälder räcker till och gör rätt. Den kommer hjälpa dig förstå varför du handlar och agerar som du gör samt öka förståelsen för ditt barn.Boken innehåller olika fallbeskrivningar där barn och föräldrar kommer till tals och berättar om sina erfarenheter. Du får också råd och verktyg kring hur du som förälder kan agera och tänka för att stödja ditt barn. Nathalie Hult är legitimerad psykolog och har flerårig erfarenhet inom barn- och ungdomspsykiatrin.

Rapport 9 från projektet ”Barn som anhöriga”, CHESS,
Institutionen för Medicin Solna, Karolinska Institutet, Lnu, Nka

Detta är den nionde rapporten i projektet ”Barn som anhöriga”, som genomförs av CHESS och Institutionen för Medicin Solna, Karolinska Institutet, i samarbete med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar. Rapportens syfte är att belysa de sociala livsvillkoren avseende ekonomi och familj för barn som växer upp med föräldrar som drabbas av fysisk eller psykisk sjukdom eller har missbruksproblem.

Ulrika Harmsen var strax över 40, hade man och tre barn och arbetade som speciallärare när hon ramlade olyckligt på jobbet. Fallskadan orsakade en hjärntrötthet som inte ville gå över. Läkarna var förbryllade och utredning efter utredning gjordes utan att man förstod vad det var för fel. Under tiden var Ulrika sjukskriven och tvingades inreda ett tyst rum hemma där hon kunde återhämta sig efter aktiviteter som tidigare hört till vardagen, som att åka och handla eller hämta barnen i skolan. Men den 15 april 2020 kom beskedet hon aldrig hade väntat sig att få höra: Du har drabbats av Alzheimers sjukdom.

Allt blev svart den dagen och Ulrika sögs in i ett mörker av depression. Fanns det ens någon mening att leva vidare när hon ändå skulle dö, förr snarare än senare? Och samtidigt hade hon en familj och tre fina döttrar som älskade och behövde henne. För dem ville hon kämpa vidare. Men hur får man tillbaka livsglädjen när man vet att sjukdomen bryter ner en och gradvis gör en sämre för varje dag?

Ulrika Harmsen berättar öppet och ärligt om hur det är att få diagnosen alzheimer i ung ålder, om att tvingas berätta det värsta för sina barn och om att hitta redskap i vardagen för att hantera sjukdomen. Det här är historien om att få en dödsdom, men också om att hitta lusten att leva igen.

Abstract

Abstract

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.

The purpose of this study was to elucidate conditions at all system levels in a specific health care service to develop practices for identification of children as relatives. An interactive research approach with the intention to create mutual learning between practice and research was used. The participating health care service cared for both clinic in- and outpatients with psychiatric disorders. Health care professionals from different system levels (micro, meso, macro) participated, representing different professions. At the first project meeting, it was obvious that there was no systematic approach to identify children as relatives. At the micro level, activities such as a pilot survey and an open house activity were carried out. At the meso level, it was discussed how to better support collaboration between units. At the management (macro) level, it was decided that all units should appoint at least one child agent, with the aim to increase collaboration throughout the whole health care service. To change focus, in this case from only parents to inclusion of children, is an important challenge faced by health care services when forced to incorporate new policies and regulations. The new regulations contribute to increased complexity in already complex organizations. This study highlights that such challenges are underestimated.

Objectives: Parental death during childhood has been linked to increased mortality and mental health problems in adulthood. School failure may be an important mediator in this trajectory. We investigated the association between parental death before age 15 years and school performance at age 15 to 16 years, taking into account potentially contributing factors such as family socioeconomic position (SEP) and parental substance abuse, mental health problems, and criminality.

Methods: This was a register-based national cohort study of 772,117 subjects born in Sweden between 1973 and 1981. Linear and logistic regression models were used to analyze school performance as mean grades (scale: 1-5; SD: 0.70) and school failure (finished school with incomplete grades). Results are presented as β-coefficients and odds ratios (ORs) with 95% confidence intervals (CIs).

Results: Parental death was associated with lower grades (ORs: -0.21 [95% CI: -0.23 to -0.20] and -0.17 [95% CI: -0.19 to -0.15]) for paternal and maternal deaths, respectively. Adjustment for SEP and parental psychosocial factors weakened the associations, but the results remained statistically significant. Unadjusted ORs of school failure were 2.04 (95% CI: 1.92 to 2.17) and 1.51 (95% CI: 1.35 to 1.69) for paternal and maternal deaths. In fully adjusted models, ORs were 1.40 (95% CI: 1.31 to 1.49) and 1.18 (95% CI: 1.05 to 1.32). The higher crude impact of death due to external causes (ie, accident, violence, suicide) (OR: -0.27 [90% CI: -0.28 to -0.26]), compared with natural deaths (OR: -0.16 [95% CI: -0.17 to -0.15]), was not seen after adjustment for SEP and psychosocial situation of the family.

Conclusions: Parental death during childhood was associated with lower grades and school failure. Much of the effect, especially for deaths by external causes, was associated with socially adverse childhood exposures.

Background: Living with a parent facing life-threatening illness and losing a mom or dad at a young age can cause both short- and long-term health problems. Without satisfactory support, adolescents' and young people are at risk of developing low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness or premature death caused by severe mental illness, substance abuse, self-harm and suicide attempts. The aim of this study was to explore adolescents' and young people's needs and preferences for support as they live with a parent with life-threatening cancer.

Methods: Qualitative interviews were conducted with 10 respondents (17-24 years) in Norway and Sweden. Data were analysed through grounded theory according to Charmaz.

Results: Adolescents' and young peoples' needs and preferences for support were described through the main category 'To feel safe and secure and to be prepared' and further broken down into five subcategories 'Relationships in the immediate family-balancing support and protection'; 'The social network-support and normalcy in a carefully selected group'; 'Maintaining everyday life-challenges in school and working life'; 'The right support at the right time-competence, trust and continuity in meeting health care professionals'; and 'Support outside the home-an opportunity for full transparency'.

Conclusion: Adolescents' and young peoples' preferences for support when living with a parent facing life-threatening illness are individual and unique, but they share a common need to feel safe and secure and to be prepared. Adolescents and young people express that they primarily want support from parents and friends, but they also want support from health care professionals, especially in situations when the ill parent becomes worse. Therefore, it is of the utmost importance for health care professionals to identify the most vulnerable adolescents and young people by mapping their social networks and paying extra attention to their needs for support when there is deterioration in the parent's illness state. This study also highlights the importance for health care professionals to establish a good relationship with adolescents and young people to meet their needs and preferences for support. In addition, information and support are needed in a timely manner and adapted to the life-threatening ill parent's illness state and individual's needs and preferences to optimise preparedness.

Aim: To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent.

Design: Integrative literature review study.

Methods: Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl.

Results: Twenty-two articles were identified. Children and adolescents' preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; "Involvement in the sick parent's care and treatment"; "Wanting to be with the sick parent but needing respite"; "Information must be continuous and individually adapted"; "emotional and communicative support from parents and family members"; "professional, compassionate and informative support"; and "support in friendships and opportunities to maintain normality."

Background: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss.

Methods: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression.

Results: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent.

Conclusion: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.

Background: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss.

Methods: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression.

Results: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent.

Conclusion: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.