Thesis advisor: Jane E. Regan / In the contemporary United States, trauma is a significant disruptive force in the lives of families. By its nature, however, traumatic suffering isolates and marginalizes its victims, with the result that the pastoral caregiving needs of suffering people can go unrecognized and unmet. This dissertation proposes that caring for families who struggle to cope in contexts of traumatic suffering and chronic distress is a vital work of mission for the Catholic church in the twenty-first century. It further proposes that this work can best be enacted in the local church setting when configured as a synodal, trauma-aware, relational, caregiving community of practice (a STAR caregiving CoP) ministry. The ministerial model offered here is designed to enable parishes and dioceses to develop compassionate, competent ministerial initiatives that can meet the particular needs of families in their communities. Grounded in the theoretical discourses of theological anthropology, ecclesiology, situated learning theory, the ethic of care, and traumatology, the model also reflects insights drawn from the author’s qualitative doctoral research study of two pastoral caregiving ministries that serve men and women struggling with the personal traumas that erupt in family life. The STAR caregiving CoP model offers the local church a flexible, robust framework to employ in the construction and evaluation of familial pastoral caregiving ministries. / Thesis (PhD) — Boston College, 2023. / Submitted to: Boston College. Graduate School of Arts and Sciences. / Discipline: Religious Education and Pastoral Ministry.

Informal caregiving for aging Canadians plays a vital role in the health care system, and scholars have noted the urgency and primacy of studying this important contribution provided by a relatively invisible cadre of volunteers, family members and friends. Despite the recent attention caregiving has received in the scholarly literature, it is dominated by quantitative research. The purpose of this qualitative inquiry was to explore the lived experiences of female caregivers in terms of their perspectives on caregiving and their own personal health and wellness. A sample of seven female caregivers was obtained using a combination of both purposive and snowball sampling. Through semi-structured interviews participants were asked to describe their experiences as a caregiver. A primary theme “one day at a time” emerged from the data. Within this overarching narrative were three sub-themes: “Intensive care”, “Transitions”, and “Support” found to characterize their caregiving realities including both positive and negative aspects. Capturing a rich understanding of the lived experience of female caregivers, intentionally including and honouring their voices, can inform the design and implementation of health promoting policies, programs, and interventions, as well as identify avenues and approaches to future research. / Graduate

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

Psychology / We examined the relationship between infant attractiveness and adult affect, focusing on the potential link between affect and differential treatment of attractive and unattractive infants in a two-phase study. In Phase 1, we investigated whether differing levels of infant facial attractiveness would elicit positive and negative affect from adults (N=87) using electromyography. Unattractive infant faces evoked significantly more corrugator supercilii and levator labii superioris movement (physiological correlates of negative affect) than attractive infant faces. In Phase 2, we measured caregiving behavior and explicit bias of the same adults toward two infant simulators, one attractive and one unattractive. Participants’ positive affect, as measured by the Positive and Negative Affect Schedule, and explicit biases predicted how well they cared for the infant simulators, but their affect measured by the facial muscle movements in the EMG portion of the study did not. These results suggest that unattractive infants may be at risk for negative affective responses from adults, though the relationship between those responses and caregiving behavior remains elusive. / text

We investigated the association of coping with quality of life (QoL) among parents of children with chronic illnesses, particularly inherited metabolic diseases (IMD); and whether coping may modify the association between caregiving complexity and parental QoL. In project 1, we systematically reviewed studies of parents of children with chronic illness. Among 10 eligible studies, we identified some evidence that adaptive coping strategies were positively associated with parental psychological QoL. In project 2, we analyzed data from a crosssectional mailed Canadian survey of parents of children <12 years of age with IMD. Among 113 respondents, greater emotion-focused coping was associated with lower mental QoL (all parents) and higher depressive symptoms (parents of children >=5 years). Analysis of significant interactions between coping and caregiving complexity did not reveal clear trends. Understanding the association of parental coping with QoL may help to inform interventions to promote parental health as part of family-centred care.

Research in the area of caregiving has tended to focus on the impact of the caregiving experience itself without consideration of continued psychological distress for caregivers after institutionalisation or death. Seven caregivers of loved ones with Alzheimer's Dementia (mostly spousal) were interviewed about their experiences of caregiving and their emotional well-being after placement of their loved one into a residential care facility or death. The nature of the carers relationship with their loved one (e.g. highly dependent), lack of social supports, inactivity and a poor experience of transition into care seemed to be factors relating to poorer outcomes for these caregivers. Utilisation of social supports, involvement in pleasant events, adequate preparation and information relating to the disease and collaboratively planned transition into care played protective roles for the remaining carers who reported decreased levels of anxiety, guilt, depression and stress post-institutionalisation/death. The implications of the current research for practise, policy change and prevention are extensive and suggest that risk factors may be identifiable and thus poorer mental health outcomes in caregivers preventable. A need for greater support to be made available to caregivers is necessary.

This thesis explores the experiences of adult siblings of individuals with impairments. It expands on the existing literature by exploring the complexity of the sibling experience of disability while moving beyond the concepts of burden and maladjustment that have characterized much of the previous literature. In addition, it expands upon and extends to the sibling experience an emerging view of disability by examining the ways in which themes identified in sibling narratives cross lines between the Medical and Social Models of Disability. Building on work by Mark Priestly and Tom Shakespeare, I call this emerging view the Interactional Model of Disability. Using in-depth interviews, four key themes have been identified: encountering bodily difference, the importance of social relationships, the mediating effects of resources, and complex emotions within the sibling experience. Findings indicate that variations within the sibling disability experience depend largely on whether impairment is appropriately acknowledged and accepted by the larger community, accessibility of resources, and the strength of social support. The use of informal caregiving was also an important factor in terms of the emotions experienced by siblings. Those participants whose families relied exclusively on informal caregiving experienced greater concerns about long term care arrangements than those participants whose families utilized some aspect of formalized caregiving such in home supports or assisted living arrangements.

Dementia is characterized as a progressive loss of brain function that results in the deterioration of many cognitive and physical abilities. Alzheimer’s disease (AD) is the most common form of dementia, causing steady declines in memory, functional abilities, and mental functioning. With a projected increase of degenerative illnesses, such as AD, family caregiving for individuals with the disease is also steadily increasing. Caring for an individual with AD has been characterized as a “career,” and within this career are a number of key transitions, including the onset of caregiving. Preexisting caregiving research reveals a number of negative consequences for AD family caregivers, including depression, overload, and physical health complications. The purpose of this study was to examine how different patterns of caregiving onset (gradual and abrupt) and role occupancy (how many roles the caregiver is holding) impact mental health and physical health outcomes for AD caregivers. This study also explored how cognitive decline and behavioral problems found within the care-recipient have the potential to moderate these relationships. Cross-sectional, quantitative data from one hundred participants completing self-administered surveys was used in this study. A series of one-way ANOVAS and multiple regression analyses were conducted to address the study’s aims. Results indicated that care-recipient cognition and behavioral problems moderated the relationship between caregiving onset and mental health outcomes, including depression, role overload, and role captivity for caregivers who experienced a more abrupt entry into the caregiving role. Results suggest the importance of considering moderating factors within the caregiving career, as well as different caregiving onset transitions. Clinical implications of the findings are discussed, as well as directions for future research, including prospective caregiving research.

The goal of this project was to understand ethnic and generational differences in attitudes towards caregiving and expected burden while taking into consideration factors such as gender, generation, familism, and acculturation. One hundred and sixteen young adults (ages 18-25) and 93 middle-age adults (ages 38-62) were enrolled in the study. Participants included European Americans, African Americans, and Hispanics. Using moderation analysis, two hypotheses were investigated: 1) Ethnicity relates to attitudes towards caregiving, moderated by gender, generation, familism, and acculturation. 2) Ethnicity and expected burden relate to each other, moderated by gender, generation, familism, and acculturation. Familism emerged as a moderator in the relationship between ethnicity and expected burden. Results suggested that the strength of the relationship between being African American and expecting burden was less for those with moderate familism (R =.078), slightly higher for low familism (R = .176), and the highest for high familism (R= .261). Additional results indicated that the strength of the relationship between being Hispanic, as opposed to being European American, and expected burden, was higher for middle-aged adults (R =.23) when compared to young adults (R =.19). The current findings lend support to the recently established idea that familism is not protective against burden as it increases one's sense of obligation towards family (Knight & Sayegh, 2010).

Background: Severe mental illnesses (SMI) cause significant impairment for those living with the illnesses and often rely on caregivers for the ongoing care. Available evidence suggests that individuals responsible for caregiving may get distressed due to the caregiving experience, a phenomenon researchers call caregiver burden. Following the shift to community-centered mental health services, several studies on caregiving burden have been conducted in high income countries (HIC). However, there remains scarcity of data on the subject in SubSaharan Africa including Malawi. Therefore, the present study investigated the prevalence and associated factors of caregiving burden among caregivers of individuals with SMI at St John of God Hospitaller Services (SJOGHS) in Mzuzu-Malawi. Methods: The study adopted a hospital based cross sectional study. Recruitment took place at two outpatient departments of SJOGHS. Informal caregivers who were 18 years and above were asked to participate. The study recruited 139 caregivers and two research assistants approached participants at the waiting area. Caregivers who gave consent were asked questions about their caregiving activities using the Zarit Burden Interview (ZBI) (maximum score, 88). Data analysis was done using frequency distributions and descriptive statistics. The study used non-parametric tests such as a chi-square on all categorical measurements to test associations between variables and parametric tests such as t test on all continuous variables. The unadjusted and adjusted associations between socio-demographic factors and caregiving burden was conducted using logistic regression models. Results: On average, most caregivers experienced mild to moderate caregiving burden on the ZBI score (31.5 ± 16.7). In the adjusted model after controlling for caregivers’ gender, caregivers’ age, level of education, social support, care recipients’ age and care recipients’ gender, only caregivers’ age, social support and care recipients’ age remained significantly associated with caregiving burden. Older caregivers were more likely to experience caregiving burden than younger caregivers (OR=1.03, 95% CI 1.00-1.06), caregivers with social support were 71 % less likely to develop caregiving burden than those without social support (OR=0.29, 95% CI 0.14-0.62) and caregivers of older care recipients were less likely to experience caregiving burden than those of younger care recipients (OR=0.26, 95% CI 0.11-0.64). v Conclusion: Even though the caregiving burden found in this study was low compared to other previous studies in some arguably developed countries such as Iran and Turkey, it remains high in other developing countries such as Ghana and Nigeria. The low burden in this study, could be attributed to several factors and context in which the study was conducted. One such factor is the routine psychoeducation that the hospital often conducts for caregivers during the subsequent monthly reviews of their care recipients. An important follow up would be to investigate caregiving burden among caregivers who are unable to access the services at SJOGHS. The results of this study are important to guide policy in the formation of effective community programs that may assist mitigate the burden of informal caregivers. Finally, to understand the importance and implications of informal caregiving, further studies are needed in Malawi.