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Syftet med denna studie var att undersöka vilka tankar och uppfattningar som vuxna syskon har kring ett omsorgsansvar för ett syskon med intellektuell funktionsnedsättning (IF). Det empiriska materialet har inhämtats med hjälp av sex semistrukturerade intervjuer med vuxna personer som vuxit upp tillsammans med ett syskon med IF. Materialet har bearbetats utifrån tematisk analys där resultatet har diskuterats i relation till systemteori, rollteori samt tidigare forskning. Resultatet visar att erfarenheten att växa upp med ett syskon med IF är mestadels positiva och påvisar starka familjeband. Begreppet omsorgsansvar definierades i studien, samt att det visade sig att ansvaret för syskonen förändras i takt med att de växte upp och behoven förändrades. Studien visar att ytterligare forskning bör fokusera på att utveckla stöd för en bra övergång gällande omsorgsansvar från föräldrar till de vuxna syskonen. / The aim of this study was to investigate what thoughts and perceptions adult siblings have about caregiving responsibility for a sibling with an intellectual disability (ID). The empirical material has been obtained through six semistructured interviews with adults who have grown up with a sibling with ID. The material has been processed based on thematic analysis where the results have been discussed in relation to systems theory, role theory and existing research. The results indicate that the experience of growing up with a sibling with ID is mostly positive and shows strong family relationships. The definition of the concept of caregiving responsibility was defined in the study, and it turned out that the resoponsibility of their siblings changed as they grew up and as such, their needs in means of care. The study indicates that further research should focus on developing support for a positive transition of caregiving responsibilities from parents to adult siblings

Providing care to child with a chronic, rare diseases has been identified as a major life stressor with a myriad of negative physical and mental health consequences. These stresses have previously been found to create burden that may impair caregiving efforts and increase the risk of mortality for both the caregiver and affected child. Many rare diseases affect children. It is not known how caregiver burden and the source of stress varies by disease. Qualitative methods have been used to understand caregiver experience with the rare disease, epidermolysis bullosa (EB), but no such studies have occurred in the United States. In order to better understand the experience of caregiving for a child with EB in the United States, a qualitative, phenomenological study was conducted. Data were collected via semi-structured interview concerning one primary research question, what is the general experience of being an EB caregiver?, and five sub-questions: (1) What stresses are specific to EB caregiving?, (2) How do EB caregivers learn to care for their child with severe EB?, (3) How do EB caregivers experience medical interactions?, (4) How do EB caregivers experience the hospitalization of their child?, and (5) How do EB caregivers cope with their caregiving role? Data analysis, using interpretive phenomenological analysis, yielded several novel findings. These included: an unusually strong emotional connection between the caregiver and child with EB, experiences of depersonalization or derealization for the EB caregiver during wound care, the positive impact of tempering expectations and celebrating for victories for the affected child, the regularity of medical injury for EB children, the traits of physicians perceived to be helpful or harmful, the stresses associated with hospitalization of children with EB, and how public recognition through community events buffers stress for EB caregiver. Finally, a framework of risk factor, protective factors, and burdensome outcomes was constructed. Risk factors were condensed into three domains: time constraints, financial problems, and pain in the affected child. Control and community supper were among the identified protective factors for EB caregivers. These findings have implications for counseling interventions for use EB caregivers, especially in hospital settings.

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Caregivers of persons with dementia often struggle to sustain meaningful communication and reciprocal emotional connection due to the deterioration in functional memory and the resulting diminishment of social-interactive abilities in their loved one. The very personhood of the care recipient is also often compromised by the reduction in those socio-communicative capacities, which in turn, can impact the function of the caregiving relationship. Emotional, as well as social isolation can increase for the familial caregiver just as it often does for the care recipient. This thesis examines the impact that an individualized, home-based music therapy program had on the emotional connection and reciprocal interactions of four familial caregiving dyads. Data were collected over a month-long period using qualitative research methods including pre and post interview, a caregiver's journal log, researcher's journal log, participation, direct observation, and the observations of the caregiver respondents themselves as they engaged in the therapeutic process with their familial care recipient. Through a cross-case analysis of data collected, four main themes emerged to reflect the experiences of the participants. These were: 1) a longing for reciprocity, 2) the experience of emotional reciprocity, 3) the emergence of personhood through shared musical experiences, and 4) perseverance in the pursuit of meaningful communication. Sub-themes, and themes relating to the researcher's participatory experiences are also included. Implications for further research are discussed.

There is evidence that industrialization and urbanization has led to an increase of immigration to urban areas for employment and has led to a change of family structure and connection between parents and adult children in Chinese societies. However, little research has compared different Chinese societies, as well as rural and non-rural regions. This study compared the adult children’s current level of filial piety, between non-rural and rural regions, and between males and females using data from an international study of countries in East Asia. Overall, China reported higher level of filial piety as compared to Taiwan. Moreover, for the regional differences, the China rural group also showed higher levels of filial piety than the China non-rural group. The gender differences between these two regions further explain this phenomenon. Both male and female non-rural groups and the female rural group reported similar amount of caregiving. However, the male rural China group reported significantly lower levels of caregiving than the female rural China group as well as both male and female non-rural groups. These results help fill the literature gap in contemporary filial piety between societies in East Asia.

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In the literature, the experience of ‘care’ and ‘caregiving’ has been well documented and widely researched. Caregivers are recognized as people (family and friends) who provide unpaid substantial care for family members. Over time, research has increased awareness of caregivers as a distinct social group and has also contributed to caregiving being a widely recognized social issue. However, despite this increased awareness and continued concern for caregivers, much of the literature focuses on adult caregivers. As a result, the experiences of other caregiving populations, such as the youth and young adults, continues to be overlooked and underrepresented. Therefore, there is a need to explore and understand the unique experience of this population and how they give meaning to their experiences. Young caregivers (YCs) are children (5-18) and young adults (18-25) who provide substantial (unpaid) care for a family member who has an illness or disability (Stamatopoulos, 2016). Research on this population is scant and there exists many notable gaps in the literature in terms of diversity, age-based differences, programming and best practices for intervention. More specifically, there is a gap in understanding the experiences of young caregivers who are affected by progressive and incurable chronic brain diseases such as Alzheimer’s Disease or a Related Dementia. As such, this dissertation explores the experiences of YACs affected by ADRD, in terms of their personal experiences with ADRD (knowledge, dementia care and care practices), perceptions of their caregiving role and how they navigate the caregiving role. It builds on scholarship on young caregivers to broaden existing knowledge by using a phenomenological approach, known as Interpretive Phenomenological Analysis, to explore their caregiving experiences and the meaning they give to these experiences in-depth (n=12). It also aims to challenge the dominant assumptions about young caregivers by giving voice to this population by situating the young caregivers as the experts in their own lives. Findings indicate that the caregiving experience for YACs is complex, and situated within a larger socio-political context, which impacts the overall experience of care. Overall, the findings contribute to knowledge on the experiences of care among YACs and highlight the need for more inclusive research and practices on addressing caregiving among this group. / Dissertation / Candidate in Philosophy / This dissertation explores the lived experiences of young adult caregivers (YACs) caring for an older adult with Alzheimer’s Disease or a Related Dementia. Research on this group of caregivers is limited, particularly YACs (ages 18-25) who provide substantial (unpaid) caregiving for an older adult affected by Alzheimer’s or a Related Dementia. Therefore, a key aim of this research is to generate awareness and shed light on the nature of caregiving as experienced by this overlooked population of caregivers. As such, this dissertation aims to understand how young caregivers give meaning to, interpret and make sense of their caregiving experience. To understand the caregiving experience of YACs, I conducted interviews with 12 YACs from Canada and the United States and analyzed their perspectives in detail. The findings shed light on the many factors that shape the caregiving experiences. In addition, the findings show that more research is needed to understand the differences amongst young caregivers to better support their needs. In general, the research can contribute to existing knowledge on young adult caregivers, as well as relevant programs and policies.

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