Role Strain, Self-Compassion, and Wellbeing in ALS Caregiving: A Mediation Analysis - PROJECT SUMMARY Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neuromuscular disease that affects an estimated 33,000 individuals in the US, with this number projected to increase by 10% by 2030. People living with ALS (PALS) require increasingly complex physical, cognitive, and behavioral support over the course of their illness. This support is usually provided by informal caregivers, such as spouses, family members, or friends, who manage multiple responsibilities and are essential to daily activities and personal care of PALS. Caregivers frequently report concerns about managing their own health and wellbeing due to the intensity of their caregiving role. The construct of self-compassion has garnered attention in intervention research as a promising target for reducing stress and promoting wellbeing. However, self-compassion is most commonly measured as a global characteristic, rather than within the context of complex caregiving for PALS. Additionally, conceptualizing subjective wellbeing as eudaimonia, defined as ‘flourishing’ or living in such a way that leads to one’s fullest potential while acknowledging individual circumstances, offers a more context relevant view of what it means to be well, even amid demonstrably difficult circumstances. The overall goal of the proposed study is to assess self-compassion as a mediator between caregiver role strain and eudaimonic wellbeing in caregivers of PALS. This will be achieved by examining the associations between role strain, self- compassion, and eudaimonic wellbeing (Specific Aim 1), and evaluating the mediating effect of self- compassion on the relationship between role strain and eudaimonic wellbeing (Specific Aim 2). Caregivers of PALS will be recruited using the ALS registry from the Center for Disease Control and Prevention (CDC) and asked to complete a survey, which will include measures tailored to the circumstances surrounding caregiving for PALS. The findings of this study will broaden our understanding of wellbeing and, by targeting contextually relevant mechanisms, will inform the development of frameworks to guide policy interventions for caregivers of PALS. Successful completion of this study will also enable the candidate to accomplish the following training goals and thereby strengthen their skills needed to transition to independent research career focused on caregiver wellbeing: (1) develop expertise related to the wellbeing of caregivers of PALS, (2) acquire advanced data analysis skills, (3) develop essential competencies for an independent research career, including scientific rigor, stakeholder engagement, and scientific communication, and (4) advance skills in public scholarship. An interdisciplinary training team has been assembled to support these goals, with expertise in palliative care, statistical analysis, psychology, neurology, and clinical practice. The proposed study directly aligns with NCCIH’s stated mission of using rigorous scientific investigation to evaluate complementary and integrative health approaches and with Objective 3 of their Strategic Plan, to “Foster Research on Health Promotion and Restoration, Resilience, Disease Prevention, and Symptom Management.”
