Session: Fostering Caregiver Resilience: Grounding Intervention Development In Participant Voices (Society for Social Work and Research 31st Annual Conference)

Background and Purpose: This symposium centers on data from the Mesothelioma Caregiver Study, a 4-year federally funded project to develop and test a social work faciliated online support intervention for those caring for a loved one with mesothelioma. Mesothelioma is a rare form of cancer with limited existing research focusing on caregivers whose needs, both as an active caregiver and after losing a loved one, can be challenging and complex. Several characteristics of mesothelioma make the experiences of caregivers and patients unique compared to other cancers and aggressive illnesses. These differences make grounding intervention development in participant voices especially important. Within this difficult disease context, caregivers cope with the challenges of managing complex care needs in a fragmented health care system, coping with grief and loss, and the impact of health-related social factors that are common to other caregiving contexts but amplified by the unique aspects of mesothelioma. This study grounds intervention development in the experiences of patients, caregivers, and those who have lost a loved one. The symposium will describe both process and outcomes from the study to date and identify lessons learned that can be applied to intervention development and social work research and practice more broadly.

Methods: The study uses a community engaged research framework in partnership with the Mesothelioma Applied Research Foundation to develop and test the feasibility and acceptability of an online support intervention for mesothelioma caregivers. In the first phase of the study semi-structured interviews were conducted with patients, caregivers, and bereaved. In the second phase, focus groups were conducted for member checking and to receive feedback on the content, timing, and format of the proposed intervention. In phase 3, the intervention will be piloted.

Results: This symposium includes four papers based on data from the first phase of the study. Paper one will provide a more detailed overview, a summary of overarching results, and plans for next steps. The remaining papers will describe key findings that will inform the next steps of intervention development. Paper two will explore the role of grief and loss in caregiver well-being including the evolution of grief from diagnosis through bereavement. Paper three will describe the types of support mesothelioma caregivers identified needing and how support needs change as they move from acute caregiving to survivorship to bereavement. Paper four will describe patient and caregiver experiences with the health care system.

Conclusions and Implications: While mesothelioma is a rare form of cancer with characteristics that lead to unique caregiving challenges, the four papers will highlight how community engaged research methods can be used to ground intervention development in patient and caregiver experiences, lessons learned that can be applied to other caregiving contexts, and implications for social work research and practice more broadly.