Bibliotek

Background: Changes in cognition caused by dementia can significantly alter how a person perceives familiarity, impacting the recognition and usability of everyday products. A person who is unable to use products cannot autonomously complete associated activities, resulting in increased dependence on a caregiver and potential move to assisted living facilities. The research presented in this paper hypothesised that products that are more familiar will result in better usability for older adults with dementia. Better product usability could, in turn, potentially support independence and autonomy. Methods: This research investigated the impact of familiarity on the use of five faucet designs during 1309 handwashing trials by 27 older adults, who ranged from cognitively intact to the advanced (severe) stages of dementia. Human factors methods were used to collect empirical and self-reported data to gauge faucets' usability. Participants' data were grouped according to cognition (i.e., no/mild, moderate, or severe dementia). Logistic regression, ranking by odds, and Wald tests of odds ratios were used to compare performance of the three groups on the different faucets. Qualitative data were used in the interpretation of quantitative results. Results: Results indicated that more familiar faucets correlated with lower levels of assistance from a caregiver, fewer operational errors, and greater levels of operator satisfaction. Aspects such as the ability to control water temperature and flow as well as pleasing aesthetics appeared to positively impact participants' acceptance of a faucet. The dual lever design achieved the best overall usability. Conclusions: While work must be done to expand these findings to other products and tasks, this research provides evidence that familiarity plays a substantial role in product usability for older adults that appears to become more influential as dementia progresses. The methods used in this research could be adapted to analyse usability for other products by older adults with dementia.

Executive functions (EFs) make possible mentally playing with ideas; taking the time to think before acting; meeting novel, unanticipated challenges; resisting temptations; and staying focused. Core EFs are inhibition [response inhibition (self-control--resisting temptations and resisting acting impulsively) and interference control (selective attention and cognitive inhibition)], working memory, and cognitive flexibility (including creatively thinking "outside the box," seeing anything from different perspectives, and quickly and flexibly adapting to changed circumstances). The developmental progression and representative measures of each are discussed. Controversies are addressed (e.g., the relation between EFs and fluid intelligence, self-regulation, executive attention, and effortful control, and the relation between working memory and inhibition and attention). The importance of social, emotional, and physical health for cognitive health is discussed because stress, lack of sleep, loneliness, or lack of exercise each impair EFs. That EFs are trainable and can be improved with practice is addressed, including diverse methods tried thus far.

Research, debate and policy on young carers has been welcomed by the carers movement and children's rights practitioners alike, but challenged by some disability rights authors who suggest defining the children of disabled parents as 'young carers' serves to undermine both the rights of disabled people and the rights of children. Among those putting forward this view are Jenny Morris and Lois Keith (Critical Social Policy, 1995, Issue 44/45). Here, we respond to the disability rights critique on behalf of academics working in the field of young carers, policy-makers and practitioners and, more importantly, on behalf of children who care.

Avhandling
Svenska

The aim of this thesis was to explore existential loneliness from the perspective of significant others, to contrast their perceptions with frail older people's experiences and to describe significant others' and family care advisors' views on existential support. This thesis is part of a larger research project about existential loneliness among frail older people, the LONE study. The thesis embraces three qualitative and one quantitative study. A total of 29 significant others, 15 frail older people and 120 family care advisors participated in the studies. The significant others were husbands, wives, daughters, sons, other relatives and friends to frail older people. The concept 'frail older people' was defined as older persons (≥ 75 years old) dependent on long-term health- or social care. The qualitative studies were based on multistage focus-group interviews (study I) and individual interviews (studies II and III). The quantitative study (IV) had a cross-sectional design and was based on a questionnaire specifically developed for the current study. Different methods to analyse data were used; hermeneutics (study I), content analysis (study II), a case study with thematic analysis (study III) and descriptive statistics (study IV). Findings from the four studies show that existential loneliness emerges when: 1) Longing for, but also striving for, a deeper feeling of connectedness, 2) Being in, but also enduring, an unwanted separation, and 3) Not finding, but still trying to recreate meaning. This thesis also shows that existential loneliness is often experienced in so-called limit situations in life and arises in difficult choices related to close relationships, in connection with experiences of meaninglessness and in the absence of connection to something or someone. The results show that existential loneliness emerges in the process of balancing between what was and what is to come in the unknown future. Significant others navigate themselves, and sometimes together with the older person, through an unfamiliar existence that makes them feel ambivalent about the de-cisions they have previously made and the decisions they need to make in the future, while also doubting the meaning in their current situation. Existential support should mainly focus on transition phases and on relational aspects. Person-centredness can be a way to make the existential needs of significant others and older people visible and to provide support based on their needs.

Investigated the dimensions of caregiving and morbidity in caregivers of people with first-episode psychosis. Caregivers (aged 16–68 yrs) of 40 people with first-episode psychosis (aged 18–39 yrs) were interviewed at home about their experience of caregiving, coping strategies, and distress. Results found that caregivers used emotional and practical strategies to cope with participants' negative symptoms and difficult behaviors and experienced more worry about these problems. They increased supervision when the participants displayed difficult behaviors. 12% of caregivers were suffering from psychiatric comorbidity as defined by the General Heath Questionnaire (D. P. Goldberg and V. F. Hillier, 1979). Those living with the participant had more frequent visits to their general practitioner. It is concluded that at first-episode psychosis caregivers are already having to cope with a wide range of problems and are developing coping strategies. Caregivers worried most about difficult behaviors and negative symptoms in participants. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Abstract
The aim was to obtain an understanding of the experience in everyday life of being a sibling when a brother or sister is receiving treatment for a cancer disease or has completed treatment. In order to illuminate the experience of the siblings themselves a phenomenological-hermeneutic method was used. Ten siblings were asked, in the form of a broad-based, open question, to tell about their experience of being the sibling of a brother or sister in this situation. There was an awareness of sibling-ship as a special relation since the brother or sister had got cancer. This feeling was very strong and close, and when needed the sibling admitted a protective and advocacy role. The siblings felt difficulties to always be loyal with the brother or sister needs and demands from other interests. They lived a new life and periods of ups and down following the condition of the brother or sister. Everyday life varied from joy to a life filled with worries and anxiety. Siblings experienced feelings of an existential nature, such as quality of life and death.

Aim: The overall aim of this thesis was to illuminate experiences of relatives of persons with severe mental illness, and their need for support from formal care. Furthermore, to illuminate nursing support of relatives of persons with severe mental illness.
Methods: A mixed methods design was used. In study I, data was collected with a questionnaire responded by 226 relatives and analysed with statistics. In study II, data was gathered with interviews with a strategic sample of 18 relatives, analysed with phenomenography. Study III gathered data from 216 relatives using open-ended questions in the questionnaire (I), analysed with qualitative content analysis. In study IV, data was collected by means of focus-group interviews with 4 groups of nurses, working in mental healthcare and analysed with phenomenography.
Main findings: The relatives experienced that their lives were intertwined with the life of their severely mentally ill next of kin. The relatives experienced burden and a poor health, and there were associations between burden and health (I). The relatives had to balance between multiple concerns and make choices on behalf of others and themselves, constantly struggling between opposing feelings and between reflections (II). Relatives' encounters with mental health personnel were mainly negative, although some had positive experiences. They strived for involvement in mental healthcare for the sake of their severely mentally ill next of kin, and wanted inclusion and support for their own sake, but mostly felt left alone with straining but inescapable responsibilities (III). The nurses conceived that their responsibility was first and foremost the patient and to develop an alliance with him or her. The nurses often felt they had to exclude relatives, but were sometimes able to support them (IV).
Conclusions: Relatives' lives are intertwined with the life of their severely mentally ill next of kin. Relatives' overall demanding life situation means that the mental health services must involve relatives for the sake of the severely mentally ill person but also include them for their own sake. They need practical and emotional support. Guidelines must be designed to address relatives' needs, and support must be adapted to the individual relative.

We conducted two studies to examine parameters of social attention in contingency awareness training using switch activation with individuals who had multiple profound disabilities. In Study 1 we compared leisure devices and social attention as reinforcing stimuli with 5 individuals. Results indicated the reinforcing qualities of social attention over leisure devices with 2 individuals and documented the importance of session length in training. In Study 2 we investigated idiosyncratic behaviors as indicators of responsiveness with 3 of the 5 original participants as they activated switches. Behavior changes during switch activation versus nonactivation times in the leisure device and social attention conditions suggested volitional movement supporting contingency awareness and preference. Implications for clinical practice are discussed. © American Association on Intellectual and Developmental Disabilities.

Previous research has shown that parent-adolescent conflict is associated with adolescent adjustment. One possible source of conflict between parents and adolescents is the discrepant ways in which they perceive their relationship, which may contribute to adolescent adjustment difficulties. The present study examined the association between mother-adolescent discrepant views in their relationship and adolescent adjustment difficulties concurrently and longitudinally. In addition, the role of a family stressor, in this case parental divorce, in enhancing the discrepant views and moderating the relationship between discrepancy in perceptions and adolescent adjustment was examined. Results indicated that discrepancies in mother perception and adolescent perception of their relationship were associated with mother report of internalizing and externalizing behavior problems concurrently and longitudinally. Furthermore, discrepancies were significantly higher in divorced families than intact families, but divorce did not moderate the relationship between discrepancies and adolescent adjustment. Clinical implications and directions for future research are discussed.

Previous research has shown that parent-adolescent conflict is associated with adolescent adjustment. One possible source of conflict between parents and adolescents is the discrepant ways in which they perceive their relationship, which may contribute to adolescent adjustment difficulties. The present study examined the association between mother-adolescent discrepant views in their relationship and adolescent adjustment difficulties concurrently and longitudinally. In addition, the role of a family stressor, in this case parental divorce, in enhancing the discrepant views and moderating the relationship between discrepancy in perceptions and adolescent adjustment was examined. Results indicated that discrepancies in mother perception and adolescent perception of their relationship were associated with mother report of internalizing and externalizing behavior problems concurrently and longitudinally. Furthermore, discrepancies were significantly higher in divorced families than intact families, but divorce did not moderate the relationship between discrepancies and adolescent adjustment. Clinical implications and directions for future research are discussed.

A rich and full exploration of the myriad of instances where a mourner is deprived of the catharsis shared grief brings. Provides numerous interventions designed to help patients recognize and explore their loss, and find meaningful and appropriate ways to resolve their grief.

I denna rapport redovisas den första delen av regeringsuppdraget om diskriminering. Den omfattar en undersökning om barns, elevers och studerandes uppfattningar om och upplevelser av situationer där diskriminering och trakasserier förekommer i förskolan, grundskolan, obligatoriska särskolan, gymnasiesärskolan, särvux och gymnasieskolan samt i den kommunala vuxenutbildningen/SFI. De övriga delarna i detta regeringsuppdrag finns redovisade dels i Skolverkets rapport "Tillgänglighet till skolors lokaler och valfrihet för elever med funktionsnedsättning", dels i Skolverkets rapport "Barn- och elevskyddslagen i praktiken. Förskolors, skolors och vuxenutbildningens tillämpning av lagen"

During the past 10 years nearly 80 studies on disorganized attachment involving more than 6,000 infant-parent dyads have been carried out. The current series of meta-analyses have established the reliability and discriminant validity of disorganized infant attachment. Although disorganized attachment behavior is necessarily difficult to observe and often subtle, many researchers have managed to become reliable coders. Furthermore, disorganized attachment shows modest short- and long-term stability, in particular in middle class environments, and it is not just a concomitant of constitutional, temperamental, or physical child problems. The predictive validity of disorganized attachment is established in terms of problematic stress management, the elevated risk of externalizing problem behavior, and even the tendency of disorganized infants to show dissociative behavior later in life. In normal, middle class families, about 15% of the infants develop disorganized attachment behavior. In other social contexts and in clinical groups this percentage may become twice or even three times higher (e.g., in the case of maltreatment). Although the importance of disorganized attachment for developmental psychopathology is evident, the search for the mechanisms leading to disorganization has just started. Frightening parental behavior may play an important role but it does not seem to be the only causal factor involved in the emergence of disorganized attachment.

Infant disorganized attachment is a major risk factor for problematic stress management and later problem behavior. Can the emergence of attachment disorganization be prevented? The current narrative review and quantitative meta-analysis involves 15 preventive interventions (N = 842) that included infant disorganized attachment as an outcome measure. The effectiveness of the interventions ranged from negative to positive, with an overall effect size of d = 0.05 (ns). Effective interventions started after 6 months of the infant's age (d = 0.23). Interventions that focused on sensitivity only were significantly more effective in reducing attachment disorganization (d = 0.24) than interventions that (also) focused on support and parent's mental representations (d = −0.04). Most sample characteristics were not associated with differences in effect sizes, but studies with children at risk were more successful (d = 0.29) than studies with at-risk parents (d = −0.10), and studies on samples with higher percentages of disorganized attachment in the control groups were more effective (d = 0.31) than studies with lower percentages of disorganized children in the control group (d = −0.18). The meta-analysis shows that disorganized attachments may change as a side effect of sensitivity-focused interventions, but it also illustrates the need for interventions specifically focusing on the prevention of disorganization.

This review concluded that disorganised infant attachment could be affected by sensitivity-focused interventions, but interventions specifically designed to prevent disorganised attachment were needed. These conclusions reflect the evidence presented, but they may not be reliable in view of the limitations in the review process and the unknown quality of the included studies.

This review concluded that disorganised infant attachment could be affected by sensitivity-focused interventions, but interventions specifically designed to prevent disorganised attachment were needed. These conclusions reflect the evidence presented, but they may not be reliable in view of the limitations in the review process and the unknown quality of the included studies.

Very young non- or hardly-speaking children with severe disabilities need active guidance to stimulate interaction with their environment in order to develop their communicative and linguistic skills. Augmentative and alternative communication (AAC) systems can help this process, provided that they are tuned to this specific user group. LinguaBytes is a research programme, which aims at developing an interactive and adaptive educational toy that stimulates the language and communicative skills of multiple-handicapped children with a developmental age of 1-4 years. In this article we show which guidelines we consider essential for developing this tool. We have developed several concepts based on these guidelines, of which we elucidate Explorascope (E-scope). E-scope consists of a tangible toy-like interface that is adaptable to an individual child with respect to his or her cognitive, linguistic, emotional and perceptual-motor skills. A first user test shows that E-scope is promising and useful for this user group.

Avhandlingens övergripande syfte var att studera multidisciplinära teams,
äldre personers och familjemedlemmars erfarenheter av hemrehabilitering.
Avhandlingen baseras på fyra studier (I-IV). Alla studierna har en kvalitativa
beskrivande design. Datamaterialet utgjordes av fokusgruppsintervjuer med
personal arbetande i team i kommunal hälso- och sjukvård (I), intervjuer med
äldre personer, över 65 år, som vårdats på sjukhuset och därefter fortsatt
rehabilitering i hemmet (II,III,IV), samt familjemedlemmar involverade i de äldres
rehabilitering (II).
Studie I visade på betydelsen av att möta äldres individuella behov och att arbeta
utifrån ett rehabiliterande förhållningssätt i avsikt att ge en hjälp som inte innebär
att ta över handlingar från den äldre. Väsentligt var att i teamet reflektera över hur
man agerar utifrån den egna professionen för att kunna utveckla ett
rehabiliterande förhållningssätt i det dagliga arbetet. I resultatet framkom att
teamen uppfattade hemrehabilitering som positiv för de äldre, men mindre
lämpligt om de äldre var svårt sjuka och de kände sig otrygga i sitt hem. Respekt
för de äldres integritet i deras hem och att göra de närstående delaktiga i
rehabiliteringen betonades. Resultatet visade på att för att kunna utveckla
samarbetet i teamet finns behov av att diskutera varje professions ansvarsområde
och klargöra gränser mellan varandras ansvarområden. Behovet av att tillföra
psykosocial kompetens i teamet framhölls för att möta de äldres behov. I studie II
framkom att de äldre upplevde rehabiliteringen vara en balansgång i att känna av
vad kroppen orkar med för dagen och vad som är realistiskt att uppnå för att
känna välbefinnande. Tryggheten i att ha någon i familjen nära sig i hemmet var
oumbärligt för att våga utföra träning och vardagliga aktiviteter. Resultatet visar
på de äldres upplevelse av otillfredsställelse med att vara beroende av andra.
Familjemedlemmar var engagerade i de äldres rehabilitering genom att finnas till
hands, hjälpa till och vara stödjande, vilket var en självklar handling men också
utmanande i att kunna hjälpa på rätt sätt. Bristande information om hjälpmedels
funktion och användning skapade frustration. Resultatet visar att både de äldre
och deras familjemedlemmar ser hemmiljön bidra till att underlätta rehabilitering.

Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers "masculine authenticity", all of them appear to cherish "his helping hands" as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional 'male activities' and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.

Abstract
BACKGROUND:
Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems. OBJECTIVE: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness.
DESIGN: This is a qualitative interview study using both focus group interviews and individual interviews. SETTING/SUBJECTS: In total, 35 family members with personal experience of living with a person with severe COPD were interviewed.´MEASUREMENTS: The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis. RESULTS: Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy. CONCLUSIONS:
Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member