Thesis advisor: Judith A. Vessey / Background: The number of children with medical complexity (CMC) cared for by parental caregivers is increasing in the United States. Studies reveal parental caregivers experience significant caregiver burden, often attributed to the disease management required by CMC. However, literature has also identified numerous systemic challenges that arise while caring for CMC at home. The impact of systemic challenges on parental caregiver burden has not been examined, thus, the purpose of this dissertation is to explore the relationship between these systemic challenges and parental caregiver burden. Methods: Three studies were completed to explore this relationship. An integrative review of literature from 2014-2023 was completed to identify systemic challenges within the home care system and whether parental caregivers attribute burden to these challenges. A case-control secondary analysis of the National Survey of Children’s Health compared levels of burden between parental caregivers and parents of children without medical complexity as they relate to systemic challenges. Lastly, a qualitative descriptive study was conducted with parental caregivers living in Massachusetts to examine their experiences of caring for CMC. Results: The integrative review of 10 articles revealed a dynamic and interconnected relationship between systemic challenges and parental caregiver burden. The secondary analysis comparing 1,352 parents (n = 676 parental caregivers) revealed significant associations and increased odds of experiencing burden among parental caregivers while navigating systemic challenges. Finally, three themes capturing the experiences of parental caregivers (N=11) emerged from collected qualitative data; lack of discharge preparedness causes emotional distress, care becomes increasingly complex creating new unanticipated challenges, and the psychological toll of parents assuming provider role. Conclusion: The findings from this dissertation provide data-driven evidence to support a relationship between systemic challenges of caring for CMC and parental caregiver burden. This greater understanding of parental caregiver experiences highlights the need for a more holistic perspective in evaluating the care of CMC at home such that systemic challenges, and not a child’s medical needs, are the focus of future exploratory, intervention, and health policy work. / Thesis (PhD) — Boston College, 2024. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

The specific aims for this study were to: (a) describe positive and negative well-being in parental caregivers of children with cancer, (b) examine if parental caregivers' personal factors (i.e., resilience and/or demographic characteristics) and child-related contextual factors (i.e., ill child's cancer characteristics and/or demographic characteristics) predict parental caregivers' positive and negative well-being, and (c) test if self-transcendence mediates the relationship between resilience and well-being (positive and negative) in parental caregivers of children with cancer. Eighty parental caregivers whose children were diagnosed with any type of childhood cancer since at least two months prior to study start participated and completed a demographic instrument, the General Well-Being Schedule, the Center for Epidemiologic Studies Depression Scale, the State scale of the State-Trait Anxiety Inventory, the Self-Transcendence Scale, and the Brief Resilience Scale. Descriptive statistics were used to describe sample demographics, levels of positive and negative well-being, self-transcendence levels, and resilience levels. Standard multiple regression was used to examine predictors of well-being. Baron and Kenny's three-step mediation analysis was used to test if self-transcendence mediated the relationship between resilience and well-being (positive and negative). Both positive and negative well-being exist in parental caregivers of children with cancer as 47% of parental caregivers were in the `positive well-being' category with total General Well-Being Schedule scores above the positive well-being cutoff of 73, 36.3% were in the `depressed' category with total scores above the depression cutoff of 16 on the Center for Epidemiologic Studies-Depression Scale, and 45% had scores that exceeded the mean anxiety score of 39.64 on the State Scale of the State-Trait Anxiety Instrument. None of the child-related contextual factors were found to predict positive and negative well-being in parental caregivers of children with cancer. Resilience positively predicted general well-being and negatively predicted depression and anxiety in parental caregivers of children with cancer. Satisfaction with current financial status negatively predicted depression. Employment status negatively predicted anxiety such that those who were not employed had significantly lower anxiety than those who were employed part-time and full-time. Self-transcendence mediated the relationship between resilience and positive and negative well-being respectively.

Due to the unique experiences and needs of parents with children diagnosed with Autism Spectrum Disorder (ASD), (i.e., child’s limited functional ability; increased duration and extent of caretaking), parents of children with ASD often experience affiliate stigma. Affiliate stigma is the internalized cognitive, affective, and behavioral impact of association with marginalized populations, in this case individuals diagnosed with a mental illness or a developmental disability such as ASD (Mak & Cheung, 2008). Outside of differences in provider-caregiver interactions (Mandell & Novak, 2005; Palmer et al., 2010), little research has explored the impact of racial and ethnic identity on ASD caregiving experiences. Research exploring differentiation of self in parental caregivers is also sparse. Differentiation is conceptualized as the way individuals think about themselves in relation to others. Optimal differentiation is characterized by emotional interdependence with others -- that is maintaining a state of connectedness without emotional over-involvement (Kerr & Bowen, 1988). To address these gaps in the literature, a self-report survey measuring affiliate stigma, differentiation of self and racial/ethnic identity was completed by 147 parents of children diagnosed with ASD. Participants identifying as a racial/ethnic minority made up 36.7% of this study’s sample. Results from a hierarchical regression analysis suggests that higher differentiation of self predicts greater affiliate stigma. Identity as a racial or ethnic minority had no significant impact on experiencing affiliate stigma.

The purpose of this study was to increase awareness and understanding of parental caregivers’ current support needs in order to provide direction in the development of a theory-based hope intervention. The intervention is intended to improve psychosocial and bereavement support for parental caregivers of children with life limiting (LLI) or life threatening illnesses (LTI). The number of parents who have children living with a LLI/LTI is increasing. The impact of these illnesses on parents is significant as they travel alongside their child and experience emotional, physical, and spiritual upheaval. Current empirical research reveals that this journey challenges parents’ understanding of life, faith, and certainty in the future. Many studies demonstrated that parents’ needs are not consistently met and parents often reported the need for psychosocial support. Hope has been found to be an important psychosocial concept for parents and has been shown to provide support when facing difficult circumstances. For this reason, the concept of hope provided the conceptual framework for this research. In order to develop a theory-based psychosocial hope intervention for parental caregivers, a large scale privately funded project that included a metasynthesis of current research, a Delphi survey, and focus groups was conducted. All three components of this project were developed by a research team of two doctorate nurse researchers, one pediatric palliative care specialist, one pediatric oncologist, one community member, and a graduate student. The study presented here is based on the Delphi survey only and serves as the graduate student’s master of nursing thesis. A Delphi survey consisting of three rounds of questions and controlled feedback to experts was employed. Sixty-eight experts were recruited including parental caregivers who have children diagnosed with LLIs or LTIs and those who care for them such as community members, nurses, social workers, and physicians. Based on Bally et al.’s (2013) grounded theory of Keeping Hope Possible, the survey focused on four subprocesses that were identified as essential for parental hope. Experts suggested strategies or activities for each subprocess. Answers were summarized and ranked in order of highest to lowest according to feasibility and effectiveness. The final round revealed a consensus and eight major themes emerged: organize basic needs; connect with others; prioritize self-care; obtain meaningful information; take things day by day; advocate for parental participation; manifest positivity; and celebrate milestones. The survey took place via email to allow easy access to experts and parents globally. This study identified needs of parents of children with LLIs or LTIs in order to develop a theory-based psychosocial hope intervention. Results have the potential to provide direction for a newly developing pediatric palliative care program in Western Canada.