This dissertation documents the joys and terrors of caring for my father throughout my twenties and early thirties. The story is autoethnographic and demonstrates the value of narrative research in fostering understandings of self, other, and the world around us. I call this reflexive practice of writing narrative education because as I engaged in it, I learned what it means to care, and how mental health and illness factor into the ways in which care is expressed and provided in my own relationships and beyond. In addition, throughout the story I was a member of the academic community, which makes caring more than an act or behavior, but a concept to unpack, an ideograph. This dissertation begins with the goal to write my story and learn from it so others might learn from it as well. While the narrative portion of my dissertation focuses on story and the craft of creative nonfiction, the final chapters present a discussion of narrative ethics and the writing process. I also delve into concepts of care, family, and community to shed light on the narrative and create a space for reflection.

For family caregivers, response to the death of the care recipient is marked by a high degree of variability. In recognition of this variability, a range of services and interventions is available to assist individuals in the adjustment to bereavement. The present dissertation, consisting of three related studies, was conducted to examine the utilization of bereavement services by family caregivers. The first study examined the role of psychological distress in the utilization of bereavement services by spousal caregivers in the Changing Lives of Older Couples (CLOC) study. The second study examined bereavement service utilization among dementia caregiver participants in the Resources for Enhancing Alzheimer's Caregiver Health (REACH) study. Both employed Andersen's Behavioral Model of Health Services Use. The third study examined bereavement service utilization, barriers, and preferences among bereaved spousal caregivers of patients of three hospices in Tampa Bay. Taken together, results of the current studies point to the importance of family physicians and members of the clergy in the provision of services to bereaved family caregivers and to the prominent role of bereavement outcomes (e.g., depressive symptoms, grief) as need factors in the utilization of bereavement services.

<p>By 2010 it is estimated that one third of the African children will be orphans as an effect of HIV/AIDS. The crisis is already a fact and most orphans are absorbed by the extended family where the grandparents become the primary caretakers. This qualitative study was carried out in Kenya to explore the situation of these grandparents and to define their current resources and needs. Eight grandparents living in rural village or urban slum caring for their orphaned grandchildren were interviewed. The results showed that these families live under extremely poor conditions lacking food, other vital neccesities and a basic social network. Local churches and support groups emerged as the grandparents main sources to enhance strength and support. Key factors causing the acute poverty is HIV-related stigma and lack of access to land.</p>

As the baby boomer generation ages, and as advanced medical techniques keep people alive longer, the need for family caregivers will grow. Researchers have determined that the health of family caregivers is generally poorer that noncaregivers. Also, the type of family relationship has been determined to influence health outcomes. This study examined how caregiving parents and caregiving adult children compared with regard to caregiving variables and health outcomes. Social support was then assessed to determine if a mediating effect existed between the predictors and health outcomes. Using data from the MIDUS II survey, the health outcomes of self-identified caregiving parents and caregiving adult children was studied in light of the predictor variables of type of relationship, provision of activities of daily living, length of time caregiving, and family demands. Multiple regression analysis was used to determine the relation between the predictors and health outcomes. Mediation tests were administered to assess if social support mediated between the significant predictors and health outcomes. The type of family relationship influenced health outcomes with caregiving parents demonstrating poorer health than caregiving adult children. Caregiving parents had lower self-rated health and higher numbers of chronic conditions than caregiving adult children. Perceived family demands were associated with increased number of chronic conditions for both caregiving adult children and caregiving parents. No significant influence was found between provision of activities of daily living or length of time caregiving with health outcomes. Similarly, no mediation effect of social support was found between the significant predictor variables and health outcomes. Using the stress process model, this study examined caregiving predictor variables and health outcomes for caregiving parents and caregiving adult children. Caregiving parents were found to demonstrate poorer self-rated health and more chronic health conditions that caregiving adult children. Unlike many previous studies, perceived family demands was found to have a strong association with the number of chronic health conditions for both groups of caregivers. / Graduation date: 2012

By 2010 it is estimated that one third of the African children will be orphans as an effect of HIV/AIDS. The crisis is already a fact and most orphans are absorbed by the extended family where the grandparents become the primary caretakers. This qualitative study was carried out in Kenya to explore the situation of these grandparents and to define their current resources and needs. Eight grandparents living in rural village or urban slum caring for their orphaned grandchildren were interviewed. The results showed that these families live under extremely poor conditions lacking food, other vital neccesities and a basic social network. Local churches and support groups emerged as the grandparents main sources to enhance strength and support. Key factors causing the acute poverty is HIV-related stigma and lack of access to land.

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.

Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease. Despite the debilitating nature of this disease, some evidence suggests patients maintain their quality of life (QOL). Caregivers, on the other hand, experience decreased QOL. Evidence suggests existential aspects of well-being such as purpose in life (PIL) may be unique and stable sources of well-being for patients and caregivers. Furthermore, patients’ and caregivers’ well-being may impact one another. The present study examined the variance structure, trajectory, and dyadic relationship of PIL and QOL in patients with ALS and their caregivers (N = 110 dyads). Data from the Seattle ALS Patient Profile Project were utilized; PIL and QOL were assessed seven times, over eighteen months. PIL was more stable than QOL and therefore a psychological resource for patients and caregivers. PIL and QOL declined with time and disease severity. Individual differences in proximity to diagnosis and death moderated within-individual change. Decline was more rapid following diagnosis and approaching death, suggesting these are critical periods in which individuals need increased support. Well-being within the dyad was interrelated. Average QOL was similar across dyads. PIL within the dyad changed together over time. Dyadic relationships may reflect similar life conditions and a shared disease experience.

Spousal bereavement has been consistently demonstrated in the literature to be one of the most highly stressful experiences in an individuals lifetime. In addition many deaths in the United States are preceded by a period of caregiving, which is also believed to be highly stressful and have a profound impact on bereavement. However the literature has been inconsistent as to the exact nature of the relationship between caregiving and bereavement and there has been some debate as to whether or not positive and negative affect variables are mutually exclusive. This dissertation sought to further address the issue of the relationship between caregiving and the bereavement experience through a series of three studies which utilized information from two datasets. The first was the Changing Lives of Older Couples (CLOC) study, a project that included both pre- and post-loss data. The second was a subset of a dataset that recruited elderly spousal caregivers of terminally ill patients from a large, local non-profit hospice. This dataset included both pre- and post-loss data and included a variety of widely used and validated measures that allowed for the examination of caregiving stressors, appraisals, and social support and their effect on both positive and negative mental health outcomes during bereavement.The first study examined the impact of caregiving on well-being during bereavement, specifically within the domains of psychological, social, and physical health, utilizing both positive and negative affect measures.

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.