Introduction/ Objectives: Stroke, the third leading cause of death in Canada, is projected to rise in the next 20 years as the population ages and obesity rates increase. Family caregivers fulfill pertinent roles in providing support for family members who have survived a stroke, from onset to re-integration into the community. However, the transition from rehabilitation to home is a crucial transition for both the stroke survivor and family caregiver. As the stroke survivor transitions home from a rehabilitation facility, family caregivers provide different types of support, including assistance with navigating the stroke rehabilitation system. They also are a constant source of support for the stroke survivor providing them with continuity during the transition. In this exploratory study we examined family caregivers’ perceptions and experiences navigating the stroke rehabilitation system. The theories of continuity care and complex adaptive systems were used to examine the transition home from hospital or stroke rehabilitation facility, and in some cases back to hospital. Methodology: Family caregivers (n=14) who provide care for a stroke survivor were recruited 4-12 weeks following the patient’s discharge from a stroke rehabilitation facility. Interviews were conducted with family caregivers to examine their perceptions and experiences navigating the stroke rehabilitation system. Directed content analysis was used to explore the perceptions of family caregivers as they reflected on the transitions home. The theories of continuity of care and complex adaptive systems were used to interpret their experiences. Results/Conclusions: During the transition home from a rehabilitation facility, family caregivers are a constant source of support, providing the stroke survivor with continuity. Emergent themes highlight the importance of the caregiving role, and barriers and facilitators that impact the role, and influence continuity of care. Also, supports and services in the community were limited or did not meet the specific needs of the family caregiver. The acknowledgment of the unique attributes of each case will ensure supports and services are tailored to the family caregiver’s needs. Mitigation of systemic barriers would also decrease complexity experienced at the micro-level in the stroke rehabilitation system, and better support the family caregiver during the transition home from a stroke rehabilitation facility.

Syftet med denna uppsats var att undersöka situationen för vuxna barn och deras upplevelser av att ge daglig omsorg till sina äldre hjälpbehövande föräldrar med invandrarbakgrund. Fokus för undersökningen var de vuxna barnens motiv för att bli anhörigvårdare och deras förklaringar till att föräldrarna inte utnyttjar hjälp från den offentliga äldreomsorgen, som hemtjänst eller äldreboende. Fem halvstrukturerade kvalitativa intervjuer med vuxna barn som vårdar sina föräldrar genomfördes. De teoretiska utgångspunkterna som valdes för att förstå den informella omsorgens sociala verklighet på ett djupare plan, var symbolisk interaktionism med begrepp somI och Me, språkliga signifikanta symboler och signifikanta andra,utbytesteori och slutligen social exklusion kopplat till länkade problem. Resultat visar att de vuxna barnen som vårdar sina föräldrar ansåg att det var deras plikt att hjälpa en förälder som tidigare i livet tagit hand om dem. De beskrev relationen på ett positivt sätt, men omsorgsgivandet beskrevs som tungt och tidskrävande. Dessa uppgifter var ibland svåra att kombinera med förvärvsarbete för den som ger omsorg till sin förälder. Betydelsefulla faktorer för de vuxna barnens val att bli anhörigvårdare visade sig vara mellanmänskliga relationer, kultur och språk - språket både som ett praktiskt hinder och en del av kulturen. Slutsatser var att anledningar bakom att inte ta emot offentlig äldreomsorg var en kombination av de vuxna barnens önskan att bevara sin kultur och deras föräldrars hjälplöshet när de inte kunde uttrycka sina behov på sitt eget språk. / The main purpose of this study was to study and understand the situation of adult children and their experiences of providing daily care for their elderly parents in need who have an immigrant background. One of the aims was to describe and analyze the motives of adult children choosing to become caregivers, without recourses to the right of using the public elderly care in form of home care and/or elderly care homes. Qualitative semi-structured interviews were conducted with five adult children who cared for their parents. The theoretical frames of analysis were symbolic interactionism with the concepts “I” and “Me” and “significant others”, the theory of reciprocity and finally risk factors for social exclusion. The theoretical frames were used to give deeper insight and different perspectives of the social reality of informal caring. Important results found in our study are that adult children who care for their parents believe it is their duty to help the person who used to take care of them. They described the relationship to their care receiving parents in positive words, but their care duties were described also as heavy and time consuming. These duties were sometimes hard to combine with employment for the family caregiver. Important factors for the adult childrens’ choice to become caregivers were interpersonal relationships, culture and language - language as a practical obstacle but also as part of the culture. Conclusions that could be drawn were that reasons behind the refrain from receiving assistance from the public eldercare was a combination of the wish of the adult children to preserve their culture and their parents’ helplessness in not being able to make themselves and their needs understood in their own language.

Family caregivers encounter immense negative consequences including decreased quality of life and increased rates of morbidity and mortality that stem from physical burdens, emotional distress, depression, social isolation, and loss of financial security. Although communication is an important aspect of caregiving, communication tasks are reportedly difficult for end-of-life family caregivers. The goal of this study was to explore the variety of communication stressors experienced by end-of-life family caregivers to gain insight into the communication tasks caregivers perceive as most difficult and the reasons why. Qualitative data was achieved through in-depth, face-to-face interviews with 40 caregivers currently providing care for a family member diagnosed with Alzheimer’s disease and related dementias (n=20; ADRD) and Glioblastoma (n=20; brain tumor [GBM]). A grounded theory approach was employed to gain insight into end-of-life family caregiver communication experiences. The results revealed that communication is perceived as a burden for end-of-life family caregivers. Not only does communication burden exist, end-of-life family caregivers experience immense tension and stress regarding a variety of relational contexts when communicating with the care recipient, others (family, friends), and clinicians. The results further revealed that communication burden stems from the caregiver’s attempt to negotiate between two opposing extremes: a desire to protect the patient and others versus a need to protect oneself. Thus, internal tension occurs when end-of-life family caregivers contemplate whether and how to engage in difficult conversations, and then again when following through. The presence of these contradictory tensions induced the emergence of barriers and therefore communication burden within various aspects of the end-of-life caregiver experience. Added insight into communication burden was achieved through a supplementary scale development study in a sample of ADRD and oncology end-of-life caregivers (N=263), which revealed communication burden as significantly associated with caregiver burden and quality of life. Implications for the advancement of interpersonal and health communication theory as well as practical tailored interventions targeting end-of-life family caregivers are discussed.

Introduction/ Objectives: Stroke, the third leading cause of death in Canada, is projected to rise in the next 20 years as the population ages and obesity rates increase. Family caregivers fulfill pertinent roles in providing support for family members who have survived a stroke, from onset to re-integration into the community. However, the transition from rehabilitation to home is a crucial transition for both the stroke survivor and family caregiver. As the stroke survivor transitions home from a rehabilitation facility, family caregivers provide different types of support, including assistance with navigating the stroke rehabilitation system. They also are a constant source of support for the stroke survivor providing them with continuity during the transition. In this exploratory study we examined family caregivers’ perceptions and experiences navigating the stroke rehabilitation system. The theories of continuity care and complex adaptive systems were used to examine the transition home from hospital or stroke rehabilitation facility, and in some cases back to hospital. Methodology: Family caregivers (n=14) who provide care for a stroke survivor were recruited 4-12 weeks following the patient’s discharge from a stroke rehabilitation facility. Interviews were conducted with family caregivers to examine their perceptions and experiences navigating the stroke rehabilitation system. Directed content analysis was used to explore the perceptions of family caregivers as they reflected on the transitions home. The theories of continuity of care and complex adaptive systems were used to interpret their experiences. Results/Conclusions: During the transition home from a rehabilitation facility, family caregivers are a constant source of support, providing the stroke survivor with continuity. Emergent themes highlight the importance of the caregiving role, and barriers and facilitators that impact the role, and influence continuity of care. Also, supports and services in the community were limited or did not meet the specific needs of the family caregiver. The acknowledgment of the unique attributes of each case will ensure supports and services are tailored to the family caregiver’s needs. Mitigation of systemic barriers would also decrease complexity experienced at the micro-level in the stroke rehabilitation system, and better support the family caregiver during the transition home from a stroke rehabilitation facility.

Bakgrund: Att vårda en närstående med livshotande sjukdom innebär ett stort ansvar och uppgiften kan både upplevas svår och tung men kan även vara en källa till tillfredställelse då man kan göra något för sin närstående. Flera studier har visat att situationen kan vara förknippad med negativa konsekvenser för närståendevårdaren. Förberedelse för att vårda är en faktor som visat sig ha samband med mer positiva konsekvenser av att vårda. Syfte: Att beskriva närståendes erfarenhet utifrån berättelser om förberedelse för att vårda sin partner i hemmet under pågående palliativ vård Metod: Kvalitativ intervjustudie, kvalitativ innehållsanalys. Deskriptiv design. Resultat: Analysen utmynnade i ett övergripande tema, Förberedelse i medvetenhet om döden och två teman; Strävan efter något att förhålla sig till i förberedelsen för det värsta; Förberedelse för att vårda en partner i livets slut- en utmaning ett ansvar och en möjlighet. Diskussion: Förberedelse för att vårda en partner i livets slut tolkades som en transition med betydelsen förberedelse i medvetenhet om döden. Två sätt att förhålla sig till döden och framtiden fanns; att skjuta upp förberedelsen eller att förbereda sig. De närstående förberedde sig trots ovisshet genom strävan efter något att förhålla sig till. Förberedelse för att vårda beskrevs som ett ansvar, en utmaning och en möjlighet. Det upptäcktes efter hand vad vårdarrollen och den förändrade relationen skulle innebära. Detta kunde upplevas antingen positivt eller negativt. / Background: Caring for a family member with a life limiting illness is a big responsibility and it can be experienced as difficult and as a burden but it can also be a source of satisfaction doing good for a loved one. Studies have shown that the situation can be associated with negative consequences for the caregiver. Preparedness is a factor that is associated with positive outcomes of caregiving such as higher levels of wellbeing, less anxiety and higher rewards of caregiving. Aim: To describe caregivers experiences from their stories about preparedness when caring for a partner during palliative care. Method: The study design was descriptive using qualitative in depths interviews and qualitative content analysis. Result: One overarching theme emerged which was Preparedness for caregiving in awareness of death, and two themes witch were Striving for something to relate to when preparing for the worst and Preparedness for caregiving-challenges, responsibilities and possibilities. Discussion: The event could be seen as a transition that caused a major change in the lives of the participants influencing meaning, roles and actions. The overarching theme Preparedness for caregiving in awareness of death could be seen as the meaning influencing the transition and a change in values and priorities in the lives of the participants and in different ways of dealing with the situation. Nurses have an important role and may through a person centered approach understand and increase preparedness through knowing what the transition means for the caregiver and where in the process he or she is.

Introduction/ Objectives: Stroke, the third leading cause of death in Canada, is projected to rise in the next 20 years as the population ages and obesity rates increase. Family caregivers fulfill pertinent roles in providing support for family members who have survived a stroke, from onset to re-integration into the community. However, the transition from rehabilitation to home is a crucial transition for both the stroke survivor and family caregiver. As the stroke survivor transitions home from a rehabilitation facility, family caregivers provide different types of support, including assistance with navigating the stroke rehabilitation system. They also are a constant source of support for the stroke survivor providing them with continuity during the transition. In this exploratory study we examined family caregivers’ perceptions and experiences navigating the stroke rehabilitation system. The theories of continuity care and complex adaptive systems were used to examine the transition home from hospital or stroke rehabilitation facility, and in some cases back to hospital. Methodology: Family caregivers (n=14) who provide care for a stroke survivor were recruited 4-12 weeks following the patient’s discharge from a stroke rehabilitation facility. Interviews were conducted with family caregivers to examine their perceptions and experiences navigating the stroke rehabilitation system. Directed content analysis was used to explore the perceptions of family caregivers as they reflected on the transitions home. The theories of continuity of care and complex adaptive systems were used to interpret their experiences. Results/Conclusions: During the transition home from a rehabilitation facility, family caregivers are a constant source of support, providing the stroke survivor with continuity. Emergent themes highlight the importance of the caregiving role, and barriers and facilitators that impact the role, and influence continuity of care. Also, supports and services in the community were limited or did not meet the specific needs of the family caregiver. The acknowledgment of the unique attributes of each case will ensure supports and services are tailored to the family caregiver’s needs. Mitigation of systemic barriers would also decrease complexity experienced at the micro-level in the stroke rehabilitation system, and better support the family caregiver during the transition home from a stroke rehabilitation facility.

This study is a multi-method, two-city, intensive, in-depth qualitative study of Huntington's disease (HD) caregivers (HDCs) in Colombia. I explored the Colombia HDCs' experience through the Hispanic culture of caring. I develop the theory of the subrogate agency based on 5 functional stages of HD from Shoulson and Fanh (1979). This study was conducted in two different regions of Colombia, Medellin and Juan de Acosta, in which high rates of HD cases have been identified. The data were collected through three methods: (a) 56 interviews with HDCs and 8 with physicians; (b) 28 participant observations of Huntington's disease sufferers (HDSs); (c) 4 interviews and 8 focus groups of 6 members each with HDCs of late HDSs. Human agency is the ability to monitor one's own action. This study showed that the gradual and serious loss of all capabilities in HDSs has a social effect on the HDSs' agency. HDSs' survival depends on the subrogation that the HDC offers to the HDS. The HDS retains self-hood, i.e. agency, through the HDC's action. This subrogation causes a paradoxical consequence, resulting in both negative and positive effects on the caregiver. The theory of surrogate agency is supported by the data. Through the progressive phases, the capacity of the sufferer for expressing suffering, and social embarrassment, as well as the capacity to fight against the illness and provide reciprocity to their caregivers, deceases. The reason is that physical and cognitive impairments, as well as depression and anger, continue to increase. The study also documented important socio-cultural differences among the study regions. For instance, HDC's solidarity was based on blood and friendship; in larger cities, HD fragmented families. The study also found that HD is taking an immense toll on caregivers, sufferers and families because they are excluded from the Colombia's Basic Health Plan.

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In caregiving literature, it is often the female gender that has been the focus of attention, and in particular women’s unpaid labor. Studies also tend to make comparisons between men’s and women’s caregiving, using men’s caregiving experiences to show not only that women face greater burdens, but also that men’s needs can be minimized. This means that while gender analysis is not uncommon in the caregiving literature, gender tends to be equated with womanhood. This is impeding us from moving the debates on care and caregiving forward. The dissertation argues – through a phenomenological analysis of men’s motives, experiences and perceptions of care and caregiving – that much could be gained if we were to rectify the gender bias by bringing attention to caregiving men in the gender-aware and masculinity-informed way that is lacking in the family caregiving literature at present. For this dissertation, 19 caregiving adult sons and sons-in-law were interviewed. The aim of the study is twofold. Firstly, it attempts to contribute to the rectification of the gender bias found in the literature on family caregiving by focusing on men’s caregiving and answering the following research questions: What motivates men to provide care for their elderly parents? How do adult sons experience caregiving? What do adult sons think that care and caregiving are, i.e. what are their perspectives on care? Secondly, this dissertation also aims to explore whether a gender-aware and masculinity-informed perspective can be used to enhance our understanding of caregiving. This study discusses how motives, experiences and perspectives, which have so far been interpreted as unique to women, are also matters that men talk about and consider important in caregiving. Thus, this study shows that a gender-aware and masculinity-informed perspective on care can increase our understanding of family caregiving and contribute to rectify the gender bias that care research suffers from. The study suggests that caregiving men should not solely be regarded as empirically interesting. This is because they are an unexploited and theoretically profuse source of information about caregiving. / I omsorgslitteraturen är det ofta kvinnor som är i fokus, och i synnerhet för att synliggöra kvinnors obetalda omsorgsarbete. Omsorgsstudier tenderar också att göra jämförelser mellan män och kvinnor där mäns omsorgserfarenheter används för att påvisa kvinnors tyngre börda samtidigt som mäns omsorgsbehov kan ges lägre betydelse. Detta innebär att även om genusanalyser inte är ovanliga inom omsorgslitteraturen så finns en benägenhet att genus likställs med kvinnors erfarenheter. Detta innebär att omsorgslitteraturen kännetecknas av en genusbias som hindrar vidareutvecklingen av debatten om omsorg och omsorgsgivande. Syftet med avhandlingen är därför tvåfaldig. För det första ämnar denna studie att bidra till att problematisera det genusbias som finns inom omsorgsforskning. Detta genom att fokusera på män som ger omsorg och svara på följande frågeställningar: Vad motiverar män att ge omsorg till  sina gamla föräldrar? Hur upplever vuxna söner och svärsöner omsorgssituationen? Vad anser vuxna söner och svärsöner att omsorg är dvs. vad är deras perspektiv på omsorg? För det andra, syftar denna avhandling till att undersöka om ett genus- och maskulinitetsmedvetet perspektiv kan användas för att vidga omsorgsforskningens förståelse av omsorg. Avhandlingen använder sig av en fenomenologisk ansats för att analysera intervjuer med 19 vuxna söner och svärsöner som ger omsorg till sina äldre anhöriga. Deras berättelser visar att motiv, erfarenheter och perspektiv på omsorg, som hittills tolkats som unika för kvinnor, också är aspekter som män talar om och tycker är viktiga i omsorgsgivande. Således visar analyserna i denna avhandling att ett genus och maskulinitetsmedvetet perspektiv på omsorg och omsorgsgivande kan bidra till en ökad kunskap inom omsorgsforskningen, men inte bara när det gäller att ifrågasätta det genusbias som finns utan också för att omsorgsgivande män har en del att bidra med till omsorgsdebatten. Avhandlingen argumenterar nämligen för att omsorgsgivande män inte bara bör betraktas som empiriskt intressanta. Deras föreställningar, erfarenheter och perspektiv erbjuder också möjligheter för teoriutveckling inom omsorgsforskningen.