This This thesis concentrates on the issues faced by family carers, who take care of their family members diagnosed with the Alzheimer's disease. Special education also relates to seniors and its principles can therefore be used in this age group. The goal of this thesis is to discover and describe challenges faced by the family carers while they support their family members with Alzheimer's. The thesis focuses on the Alzheimer's disease itself, its causes and risk factors. The thesis also concentrates on the origins of the disease, its stages, diagnostics and therapy. Next, psychic and physical burdens of the family carers are depicted. The thesis also introduces organizations that specialize in providing informal support for the family carers and relief care, and disease related legislation is listed. The necessary research data were collected through semi-structured interviews with direct family carers. KEYWORDS Alzheimerś disease, caregiver, home care, family member, dementia

Background & aims: Several systematic reviews have demonstrated that caring for a child with functional limitations leads to poor caregiver mental health outcomes. For instance, depression, anxiety and caregiver burden are endemic in informal (unpaid) caregivers of children with cerebral palsy (CP), a common paediatric disability. However, caregivers who receive an adequate amount of social support are likely to better adjust to the caregiving role. Given the increasing move towards family-centred care and evidence-based care, there is a need to evaluate caregivers’ mental health and to develop and implement context-specific caregiver well-being programs. The valid measurement of the impact of these programs is dependent on the availability of psychometrically robust patient-reported outcomes (PROMs). Unfortunately, most available PROMs have been developed in high-income settings, and their applicability in low-resource settings such as Zimbabwe may be questionable. The present study thus aimed to develop a context-specific caregiver strain outcome, to adapt, translate, and validate a social support outcome measure and finally to profile the mental health of caregivers of children with CP residing in Zimbabwe. Methods: The Zimbabwean Caregiver Challenges Scale (ZCCS) was developed through the amalgamation of findings from a systematic review, caregivers’ interviews and two rounds of content validation by a panel of experts. A systematic review was then undertaken to appraise the psychometric properties of the Multidimensional Scale of Perceived Social Support (MSPSS). The MSPSS was then adapted, translated into Shona, a Zimbabwean native language, and validated. In the final phase, further validation of the ZCCS and the MSPSS was done, and structural equation modelling was used to profile the mental health profile of caregivers. Results: The ZCCS yielded four factors which were ; physical & economic burden, concerns for the child, family relations and community participation. The ZCCS was found to be a reliable tool as it yielded excellent Internal Consistency (IC) ratings at both sub-scale [α range: 0.765- 0.841] and scale level [α=0.925]. The Interclass Correlation (ICC) (95% CI) for ZCCS scores at baseline and after four weeks was 0.880 (0.793: 0.930), demonstrating the stability of the ZCCS. We replicated the original 3-factor structure of the MSPSS through factor analysis. Further, dichotomisation of scoring options and the deletion of one item resulted in a parsimonious solution as the 11-items solution met Rasch modelling requirements. The MSPSS-Shona version is reliable; it yielded excellent IC ratings at both sub-scale [α range: 0.833-0.892] and scale levels[α=0.8685]. The ICC rating (95% CI) for MSPSS scores at baseline and after four weeks was 0.980 (0.959: 0.990) demonstrating the stability of the MSPSS, and the person separation index (PSI) was 0.731. Both the ZCCS and MSPSS displayed construct validity; higher caregiver burden was associated with greater psychiatric morbidity and lower health related quality of life. Caregivers who received a higher amount of social support had the best mental health outcomes. Further, structural equation modelling provided evidence of the multidimensionality of the caregiver burden. Contextual factors, such as increased child age, increased caregiving duration, lower child functional capacity/more severe CP, and lower socioeconomic status were associated with poor mental health functioning. Conclusion: The thesis contributes to the body of knowledge by documenting the validation of caregivers' mental health outcomes and determination of mental health functioning of caregivers residing in low-resource settings. The ZCSS and MSPSS were both found to be valid and reliable measures within the context of Shona speaking rural and urban Zimbabweans. It is therefore suggested that both measures can be used with confidence in these contexts. Efforts should be made to integrate patient-reported outcome measures (PROMs) in routine clinical care and research and in developing and implementation of tailor-made caregiver wellness programs, within the validation contexts.

No description available.

Syftet med studien är att undersöka hur barnets bästa konstrueras i LVU-domar 2 § i Sverigeunder tidsperioden 1985-2015. Studien utgår från en socialkonstruktionistisk grund där endiskursanalys har genomförts på det insamlade materialet. I analysen har Laclau och Mouffesmaktbegrepp och diskursteori nyttjats i syfte att förstå hur barnets bästa konstrueras. Resultatenvisar att det förekommer varierande konstruktioner av barnets bästa under den studeradeperioden, där det i de tidiga årtiondena fokuseras på en skyddsaspekt och utvecklas i de senareårtiondena till att inkludera barnets behov i en bredare aspekt. Resultatet visar även attkonstruktionen av barnets bästa i relation till föräldrar skiftat under den studerade perioden, dåföräldrarnas intresse minskar till förmån för barnens ju närmare nutid studien sträcker sig.Avslutningsvis framkommer det att barnets bästa går från att vara implicit i de tidigare domarna,till att vara explicit i de senare domarna. Studien bedöms vara relevant för professionerinvolverade i LVU-processen, utifrån att förstå hur förändringarna av barnets bästa påverkas avdess aktuella kontext. Att belysa varierande konstruktioner av barnets bästa kan även belysabehovet av en mer enhetlig syn gällande innebörden av begreppet – framförallt utifrån etträttssäkerhetsperspektiv. / The objective of this study is to examine how the best interest of children is constructed in LVUrulings 2 § in Sweden during the period 1985-2015. The study builds from a foundation ofsocial constructionism, where a discourse analysis was implemented on the collected materials.In the analysis, Laclau and Mouffe’s discourse theory and idea of power have been used tounderstand the construction of the best interest of the child. The results show that there aredifferent constructions of the child´s best interest during the examined period; in the earlydecades there were focus on the protection of the child, while in the latter years the constructionincluded more areas of the child´s best interest. The study also shows that the construction ofthe child in relation to their caregivers developed in the latter years. In the early years thecaregivers were constructed as a big part of the child´s best interest, a construction thatdecreased in the latter years. It also emerges that the best interest of the child goes from assumedto defined, as we proceed through the period. The study is estimated to be relevant toprofessionals involved in the LVU-process, to aid their understanding of how the narrative isinfluenced by the current societal context. The identification of the varied constructions in therulings, demonstrate the need of a more standardized view of the concept.

Bakgrund: Var tredje sekund drabbas en person av en demenssjukdom i världen. De flesta av dessa bor kvar hemma i flera år och blir vårdade av en anhörig. Enligt svensk lag ska anhöriga erbjudas anhörigstöd av sin hemkommun. Syfte: Syftet var att belysa anhörigas upplevelse av stöd för att vårda närstående med demenssjukdom i hemmet. Metod: En litteraturöversikt baserad på kvalitativa vetenskapliga artiklar. Resultat: I sammanställningen av 10 kvalitativa vetenskapliga artiklar framkom tre kategorier: upplevelse av personlig information, upplevelse av vardagligt stöd samt upplevelse av reflektion. Anhöriga upplevde informationsbrist om att det fanns stöd att tillgå i vårdandet av sin närstående med demenssjukdom i hemmet, och hur de får tillgång till dessa stöd. De anhöriga som däremot fått information om stöd uppskattade också stöden då det bidrog till avlastning i vardagen och bättre livskvalitet. Dessutom upplevde anhöriga att stödet hade bidragande faktorer till att klara av vardagen. Många anhöriga hade en positiv upplevelse av att få stöd i skriftlig, muntlig och gruppvis form, ett stöd som också gav upphov till reflektion. Slutsats: Att vårda sin närstående med demenssjukdom kan vara både fysiskt och psykiskt påfrestande, vilket gör att behovet av stöd är viktigt för den anhöriga. Stöd till anhöriga behöver komma in i ett tidigt skede, men eftersom behovet av stöd ändras över tid krävs också kontinuerlig uppföljning för att en tillräcklig omvårdnad ska upprätthållas. / Background: Every three seconds, a person in the world suffers from dementia. Most of these stay at home for several years and are cared for by a relative. According to Swedish law, relatives must be offered relative support by their home municipality. Aim: The aim was to shed light on relatives' experience of support for caring for relatives with dementia at home. Method: A literature review based on qualitative scientific articles. Results: In the compilation of 10 qualitative scientific articles, three categories emerged: experience of personal information, experience of everyday support and experience of reflection. Relatives experienced a lack of information that there was support available in the care of a close relative with dementia at home, and how they get access to this support. The relatives who, on the other hand, received information about support also appreciated the support as it contributed to relief in everyday life and a better quality of life. In addition, relatives felt that the support had contributing factors to coping with everyday life. Many relatives had a positive experience of receiving support in written, oral and group form, a support that also gave rise to reflection. Conclusion: Caring for a close relative with dementia can be both physically and mentally stressful, which means that the need for support is important for the relative. Support for relatives needs to come in at an early stage, but since the need for support changes over time, continuous follow-up is also required in order maintain adequate care.

Bakgrund: Kronisk sjukdom är ett permanent sjukdomstillstånd. Hälsa ur holistiskt perspektiv ses som en helhet, därav bör vården utformasutifrån den enskilda individens behov. Idag vårdas många personer hemifrån av en närstående. Den informella vårdaren har enbetydande roll i den hälsofrämjande processen. Sjuksköterskans ansvar innefattar att bidra till hälsa, minska lidande och förebygga skador, och att kunna inkludera närstående vid personcentrerad vård. Syfte: Syftet var att belysa närståendes upplevelser av att vårda en anhörig med kronisk sjukdom. Metod: En allmän litteraturöversikt utfördes i enlighet med Fribergs metodbeskrivning. Databaserna Cinahl Complete och PubMed användes vid sökning av sökorden extended family, family, caregivers, chronic disease och middle aged. Resultatet bygger på nio kvalitativa artiklar samt två artiklar med mixad metod. Resultat: Deltagarnas upplevelser kunde skilja sig åt. Vardagen blev påverkad, vården för anhöriga innebar känslomässiga implikationer vilket påverkade familjedynamiken. Resultatet tydde också på att deltagarnas behov av interaktioner med sjukvården ansågs vara en viktig del av upplevelsen. Sammanfattning: Deltagarna upplevde den vårdande rollen som begränsade samt att den försvårade anpassningen till vardagen. Detta kunde vara komplicerat för relationen mellan vårdaren och den anhörige. Upplevelserna var främst negativa men kunde även uppvisa positiva inverkan. / Background: Chronic disease is a permanent state of illness. Health from a holistic perspective is perceived as a entirety and therefore caregiving should be designed in relation to each individual's needs. Many people get homecare from a relative today. The informal caregivers have a meaningful role in the promotion of health. Nurses are responsible for contributingto good health, reduced suffering, and injury prevention and to also include relatives with person centered care. Aim: The aim of this study was to shed light on experiences of caregiving for a relative with a chronic illness. Method: A literature review was made according to Friberg’s method description. The databases Cinahl Complete and PubMed were used for the search with the keywords extended family, family, caregivers, chronic disease and middle aged. The result of the study was based on nine qualitative articles, and two using mixed methods. Results: The participants' experiences could differ from one another. These described how caring for a relative impacts everyday life, impeared health, impact upon relations and significance of interaction with healthcare. Summary: Participants experienced the caring role as limiting, and complicated to combine with everyday life. This could complicate the relationship between the caregiver and the relative. The experiences of caring for their relatives were mostly negative but the result could also show some positive outcomes.

Caregiving, specifically caregiver burden, is commonly related to decreased psychological well-being. Conversely, marital quality is positively related to psychological well-being, though existing literature presents mixed findings as to whether or not a gender difference exists in this relationship. The current study examined the relationship between objective and subjective spousal caregiver burden and psychological distress with marital quality as a moderator. Gender differences in this relationship were also explored. 1,066 spousal caregivers from the National Study of Caregiving (NSOC) were used to estimate cross-sectional moderation models and plot significant interactions in Mplus. Results indicated a significant positive relationship between subjective caregiver burden and psychological distress, and higher marital quality protected against psychological distress in this relationship. The connection between objective caregiver burden and psychological distress was not significant, and no gender differences were found in the moderation of marital quality. These findings suggest that perceptions of caregiver burden are important for the psychological health of spousal caregivers, and higher marital quality may be an effective buffer of this relationship regardless of gender. Spousal caregivers who perceive caregiving to be highly burdensome may benefit from improving their marital quality to protect against negative psychological health outcomes.

Caregivers of children with autism spectrum disorder (ASD) experience unique challenges while fulfilling their long-term responsibilities and often experience and report higher levels of stress and a decrement in well-being compared to other caregivers. By using four databases (EBSCO, ProQuest, Scopus, and Web of Science), a systematic literature review was conducted on interven- tions to improve these aspects among caregivers. The selection process was limited to articles writ- ten in either English or Spanish, peer-reviewed studies, published between 2011 and 2022, and em- pirical data studies. Seven articles that conducted different interventions met the inclusion criteria and were used to analyze the conducted interventions, together with the reported outcomes. Results show a variety of interventions, differences in length, and used approaches. Regarding the outcomes, support programs were found to be effective when reducing stress and improving the well-being of the studied population; however, there is not enough evidence to conclude their long-lasting effects. Future suggestions include studying larger and more representative samples assessing the interven- tion ́s long-term effects.

When families use a listening and spoken language communication modality to communicate with their child, access to a rich linguistic environment through an intact auditory system is essential. In children with hearing loss, optimal auditory access is achieved through the consistent use of appropriately fitted hearing devices or other assistive hearing technology, allowing these children access to an ample language environment. Parents or caregivers of children with hearing loss or hearing concerns play a large role in facilitating their child’s use of hearing device, as well as supporting their child’s speech and language development, a potentially overwhelming experience for these families. The aim of this study was to continue a similar, previously completed project within the Audiology and Speech Language Pathology program at ETSU. The purpose of both studies was to improve parent self-efficacy, i.e., their confidence in their ability to optimize their child’s amplification use and linguistic exposure, increase family knowledge on language outcomes, and increase consistent use of amplification/treatment options by providing an educational workshop to families with children identified with hearing loss and/or hearing concerns. The current study was adapted based on caregiver feedback from the previous study. The hypothesis of this study was to see an enhancement of self-efficacy skills in parent participants. An educational workshop encompassing 1. the impact of hearing loss and/or hearing concerns on language development; 2. the importance of language exposure; 3. use and care of amplification/treatment options, and 4. empowerment to establish consistent device use in families that utilize amplification or other technology was delivered through a virtual meeting with participants. The participants’ self-efficacy skills regarding their child’s device use and language development were assessed and measured through a pre- and post-survey, the Scale of Parent Involvement and Self-Efficacy-Revised (SPISE-R). The SPISE-R surveys caregivers about their child’s device use as well as their perceptions of their own beliefs, knowledge, confidence, and actions pertaining to supporting their child’s auditory access and spoken language development. The assessment and workshop incorporated in this study were modeled after Ambrose et al. (J Early Hear Detect Interv, 2020) who developed the SPISE-R as a promising tool for use in early intervention to better understand and further support parent’s strengths and needs concerning their young child’s auditory access and spoken language development. Participants were recruited via email from an Early Intervention Specialist. A total of three pre-surveys were completed. Four parents attended the virtual workshop but none of them completed a post-survey. Therefore, data analysis was based on a comparison between the pre-surveys completed in the previous study (n=3) and in the current project. The results revealed that the participants from the current study rated themselves as having lower self-efficacy in supporting their child’s device use and language development than the participants of the previous project. Based on these results, future studies should consider: 1. recruiting from a larger pool of parents 2. hosting the workshops in-person instead of virtually 3. offering workshops multiple times to better accommodate parent schedules, and 4. shortening the survey.

Abstrakt:Samhället är under ständig utveckling vilket innebär en anpassning och omställning på arbetsplatserna. Detta medför krav på prestation och effektivitet vilket kan sätta det mänskliga förutsättningarna i andra hand. Inom vård och omsorg har den psykiska ohälsan ökat bland personalen vilket i sin tur kan påverka brukarnas välbefinnande. Ledarskapet präglas av denna samhällsutveckling och har samtidigt ett genomgripande ansvar för både personalens och brukarnas välbefinnande och att främja den psykosociala arbetsmiljön. Ett salutogent ledarskap där chefen reflekterar över vad som gör situationen begriplig, hanterbar och meningsfull för personalen är kvalitéer som uppges ska skapa förutsättningar för personalens välbefinnande och känsla av sammanhang i arbetslivet. Syftet med denna studie är således att undersöka hur chefer i verksamheter inom LSS (Lagen om stöd till vissa funktionshindrade) beskriver upplevelsen av sitt ledarskap och förhållningssätt till personalen och brukarna utifrån ett salutogent förhållningssätt. Studien utgår ifrån den kvalitativa metoden semi-strukturerade intervjuer där fem chefer inom LSS-verksamheter har intervjuats. Empirin har analyserats med hjälp av tidigare forskning om ledarskap men också utifrån olika ledarskapsteorier och då huvudsakligen Aaron Antonovskys teori om känsla av sammanhang (KASAM) som är grundkonstruktionen i ett salutogent ledarskap. Resultaten visar på att chefernas ledarskap framställs till att inta olika ledarskapsstilar och handlingssätt. Utifrån det beskrivna förhållningssättet så går det att identifiera salutogena kvalitéer och ett salutogent ledarskap men det går även att identifiera emotionella kvalitéer som genom forskning definierar socialt ledarskap. / Abstract:The society is under constant development, which means adaptation and conversion in the workplace. This implies performance and efficiency, which can put human conditions in second hand. In healthcare, mental health has increased among personnel, which in turn can affect the well-being of the care-users wellbeing. Leadership is characterized by this development of society, and has at the same time a fundamental responsibility for the well-being of both personnel and care-users and to promote the psychosocial work environment. A salutogenic leadership where the manager reflects on what makes the situation understandable, manageable and meaningful to the personnel, quality is stated to create the conditions for the well-being of the personnel and the sense of coherens in working life context. The purpose of this study is thus to investigate how managers in activities within the LSS (Act on Support for Disabled People) describe the experience of their leadership and approaches to personnel and careusers based on a salutogenic approach. The study is based on the qualitative method of semi-structured interviews where five managers in LSS activity have been interviewed. The empirical has been analyzed by means of previous research on leadership, but also from different leadership theories, and then mainly Aaron Antonovsky's theory of sense of coherens (KASAM), which is the foundation of the salutogenic leadership. The results show that managers' leadership is being developed to adopt different leadership styles and behaviours. Based on the described approach, it is possible to identify salutogenic qualities and a salutogenic leadership, but it is also possible to identify emotional qualities that, through research, define social leadership.