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Caregivers of family elders have diverse needs, many of which are not being met sufficiently. The purpose of this study was to analyze the congruency between family policy and the needs of family caregivers. Based on the rational policy model, a normative policy analysis of the economics of family caregiving, both its costs and benefits to individual families, corporations, and to society, was provided. A dynamic theoretical framework incorporating the social ecological perspective, role theory, and life course approach, was used to critique the effectiveness of Family and Medical Leave Act (FMLA) of 1993 (P.L. 103-3) and the National Family Caregiver Support Program (NFCSP) of 2000 (Title III-E and Title VI-C). Combined, FMLA and NFCSP are effective in meeting the wide range of informal caregivers' financial, training, and support needs. The workplace-related policies of FMLA speak more to the financial assistance - albeit minimal - and work environment-structural components of caregiver support, while NFCSP pertains more to the training and supportive aspects of family caregiving support. However, workplace policies in support of family caregivers should be more individualized and current caregiver support programs should be expanded to align more closely with the needs of employees and citizens. / Master of Science

Guided by an explanatory matrix of family conflict at the end-of-life, the goals of this mixed methods study were to further generate theory regarding family conflict and to provide insights into its correlates and predictors. Sources of data analyzed include quantitative survey responses from 161 hospice family caregivers, 15 in-depth interviews with hospice family caregivers, and 10 interdisciplinary focus groups with hospice professionals. An explanatory matrix is presented that portrays family conflict at the end-of-life as a complex phenomenon influenced by salient contextual variables, conditions, and factors that may contribute to a number of negative outcomes for patients, family members, and professionals. The matrix also provides a beginning understanding of approaches utilized by hospice professionals in their work with families experiencing conflict. Significant bivariate correlations were found between family conflict and family context variables (i.e. prior conflict, length of caregiving, caregiver gender, caregiver age, presence of children in the caregiver’s home, advance planning discussions within family), conditions (i.e. family coming out of the woodwork and patient care needs) and contributing factors (i.e. communication constraints and family asserting control). In the multivariate model, significant predictors of family conflict included prior conflict, caregiver gender, caregiver age, advance planning discussions within family, family coming out of the woodwork, communication constraints, and family asserting control; the model explained 60% of the variance in family conflict. Implications for routine assessment, further examination of interventions to prevent and address conflict, and future research are highlighted. / text

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Thesis advisor: James Lubben / Thesis advisor: Sara M. Moorman / Every year, more than three million allegations of childhood maltreatment are received by child protective services, many of which involve cases of abuse or neglect inflicted by the victims’ parents. A number of studies found that negative consequences of childhood maltreatment can last for a lifetime. Despite the long-term impact of childhood maltreatment, later-life relationships between adult victims of childhood maltreatment and their abusive parent have rarely been examined. This dissertation aims to address the gap in the literature by examining how adult victims of childhood maltreatment relate to their abusive parent when the parent becomes old and requires long-term care assistance. This three-paper dissertation utilized existing data sources: Wisconsin Longitudinal Study and National Survey of Midlife Development in the United States. The first paper examined the mediating effect of intergenerational solidarity with the aging mother in the association between maternal childhood maltreatment and adult psychological functioning. The second paper used longitudinal data analysis to compare long-term changes in affectual solidarity with aging mothers between adults with a history of childhood abuse and those without. This paper also examined moderating effects of the correlates of childhood abuse (i.e., poor social competency and lack of emotional regulation) in the association between childhood abuse and affectual solidarity with the aging mother. The third paper focused on the caregiving situation in which adult victims of childhood abuse provided care to their abusive parent. This paper investigated whether and how providing care to the abusive parent was associated with psychological distress among abused adult children, and whether self-esteem mediated the association. By revealing the dynamics of later-life relationships between adult victims of childhood maltreatment and their abusive parent, this three-paper dissertation not only contributes to creating new knowledge to the aging literature, but also provides future direction for social work practice and policy. / Thesis (PhD) — Boston College, 2016. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.

<p>Caregivers of individuals with dementia describe a wide spectrum of caregiving experiences, ranging from very negative to very positive. Previous literature acknowledges these differing experiences, but how and why they differ has rarely been investigated. Dementia caregiving can be burdensome with many psychological, physical, social and financial challenges. However, it can also be an opportunity for growth and transcendence as caregivers find meaning in caregiving. High levels of mutuality (the perception that the quality of the care relationship is positive), reportedly ameliorates negative caregiver outcomes. Thus, this dissertation consists of three studies that explore aspects of the caregiver-care recipient relationship that may enhance positive caregiving experiences. </p><p> The first study was a secondary analysis of factors related to caregivers' perceptions of care relationship mutuality over a 12 month period. Caregivers who reported high mutuality were less likely to be depressed and more likely to provide care for longer periods before deciding to institutionalize the care recipient. The second study was a secondary analysis of caregiver interviews. It revealed that caregivers who reported a positive caregiving experience described both their past and present relationship in loving terms and reported that they understood their care recipient could not reciprocate. These caregivers focused on aspects of the relationship that still existed, rather than on what they had lost. They expressed satisfaction with caregiving, were other-focused, and reported little caregiving burden. The third study was a qualitative descriptive study. Caregivers who reported finding meaning in caregiving were interviewed to explore how they were able to do so. These caregivers used strategies such as accepting the situation, deciding to care, choosing a positive attitude, focusing on the blessings of caregiving, and actively seeking care resources. They demonstrated altruistic values and the determination and discipline to live those values. They also possessed strong faith, love, and social support, and said they had derived strength from past challenges.</p><p> Clinicians and researchers should explore the quality of the caregiving relationship as a critical factor in caregiver and care recipient outcomes. Caregiver interventions should include relationship-building skills and empathy building techniques to offset adverse caregiver outcomes and enhance understanding and acceptance of changes that occur in the care recipient over time.</p> / Dissertation

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Bakgrund: Andelen vårdtagare som är i behov av palliativ vård i hemmet ökar och därmed också andelen närståendevårdare som utgör en viktig del av vården. Det är en svår övergång att gå från närstående till närståendevårdare och därför är det viktigt för vårdpersonalen att främja närståendevårdarens roll som en god resurs i vårdteamet. Syfte: Att beskriva närståendevårdares erfarenheter av palliativ vård i hemmet. Metod: En litteraturöversikt med en sammanställning och analys av totalt tolv vetenskapliga kvalitativa artiklar. Resultat: Tre kategorier framkom i resultatet; interaktion med vårdpersonalen, utsatthet samt teamarbete och delaktighet. Närståendevårdarna hade ett stort behov av en god vårdrelation och kommunikation med vårdpersonalen och de ville ha en tydlig roll i vårdteamet. De ville även bli bekräftade och sedda som en individ med egna behov samtidigt som de tyckte det var problematiskt att sätta sina egna behov i främsta rummet. Slutsatser: Närståendevårdares erfarenheter av palliativ omvårdnad i hemmet har visat sig vara mångtydigt på grund av individuella behov. Det är en balansgång att som vårdpersonal se till de aktuella behoven och kunna bemöta närståendevårdare på bästa sätt. Vårdpersonal ska, för att optimera den palliativa hemsjukvården, individ- och situation anpassa med hjälp närståendevårdarna som en stor del av teamsamverkan. / Background: The proportion of patients who are in need of palliative care in the home increases and therefor the proportion of informal carers’ increase. It is a difficult transition to go from next of kin to informal carer and therefore it is important for the professional care team to promote informal caretaking role as a good resource in the care team. Objective: To describe informal carers’ experience of palliative home care. Method: A literature review with summary and analysis of twelve qualitative articles. Results: Three main categories emerged in the results; interaction with caregivers, exposure and teamwork and participation. Informal carers had a great need of a good care relationship and communication with the medical staff and they wanted a clear role in the care team. They wanted to be confirmed and seen as individuals with individual needs while they thought it was problematic to put their own needs first. Conclusions: Carers experiences of palliative care in the home has proved to be ambiguous due to individual needs. There is a balancing act to how healthcare professionals have to meet the current needs and to respond to informal carers in the best way. It is therefore important for the healthcare professionals to individualize and adapt the care regarding different situations in palliative home care with help from the informal carers as a big part of the teamwork to optimize the care.

This project focused on developing a more complete picture of the event that most often occurs when an older adult’s health care needs can no longer be met in the community setting; the transition from home into a new long-term care (LTC) environment (i.e., assisted living [AL] or residential care [RC]). Informed by a life course perspective (Elder, 1998; Marshall, 2009) and by the health service utilization framework (Andersen, 1995; Andersen & Newman, 1973), this thesis explores the relationship between service users and their social and service contexts in the Fraser Health (FH) region of British Columbia. Employing a multi-method research design, two studies, one quantitative and one qualitative, were conducted. The goal of the quantitative study was to draw attention to individual, social, and structural factors (e.g., age, gender, marital status, presence of/relationship to primary caregiver, and health variables) that influence the transition from home and community care (HC) services to either AL or RC among older LTC clients (age 65+; N=3233) in three geographic areas (urban, suburban, and rural). Findings revealed that marital status, income, functional disability, and cognitive performance influenced type of transition for both rural and urban clients. However, gender, medical frailty (i.e., CHESS score), number of chronic conditions, and total hospitalizations emerged as significant among clients in suburban areas. The goal of the qualitative study was to draw attention to the role of family caregivers in the care transition context. Employing thematic analysis, this study drew on a sample of 15 semi-structured interviews with family caregivers who had helped a family member transition from home into a new care environment in FH. Out of this work, a conceptual framework was developed inductively to illustrate three key phases that seemed important in their care journey: ‘Precursors leading to transition’, ‘Preparing to transition into new care environment’, and ‘Post-transition: Finding a new balance Three overarching themes, labelled with direct quotes (in vivo), were also developed to capture how family caregivers made sense of their roles and responsibilities: “I’m just her daughter” / “I’m just his wife”, “Just go with the flow”, and “There wasn’t a door I didn’t try to open”. Overall, the findings from both studies draw attention to the importance of generating a better understanding of the local service and social contexts. Implications for social policy are addressed and highlight the need to continue to invest in efforts aimed at supporting older adults to remain in the community as long as possible, including ensuring appropriate forms of care are available and adequate resources for family caregivers are offered. / Graduate

As the U.S. population ages the number of family caregivers is expected to rise. Family caregivers are a valuable source of informal healthcare services for patients and the public, in terms of reducing healthcare costs. However, research suggests family caregiving is not only financially costly for individuals, but associated with a number of medical and mental health risks, with spouses at higher risk for negative outcomes compared to other family members. Traditional evidence-based therapies for stress in family caregivers have been shown to be minimally efficacious with spouses. No therapies take into account the existential nature of spouse caregiver stress, including the potential nonconscious role of loss of life meaning/purpose and death anxiety. This study of multiple baseline design preliminarily explored the effects of a novel 8-week Terror Management Theory integrated existential psychotherapy (TIE) on stress and nonconscious mechanisms believed to function as buffers for existential anxiety, in five women with spouses receiving cancer treatment. Methods included ecological momentary assessment (EMA) of anxiety and self-esteem states via text message sent three times daily – and intermittent assessment of death anxiety, self-compassion, meaning in life, and quality of life at baseline, intervention, immediate post, and 1-month follow-up. Visual and statistical analyses indicated significant between-phase trend changes in anxiety and self-esteem within participants, although direction of changes varied across participants. Additionally, changes in death anxiety, self-compassion, meaning in life, and quality of life between phases varied across participants in directions inconsistent with intervention aims and participants’ subjective impressions of intervention-related changes. Mixed findings point to the complexity of spouse caregiver psychology and highlight the need for more effective therapies with this population. Results may also guide future research and development of existentially-informed therapies.