Publication
Understanding and Optimizing Rest and Rejuvenation for Family Caregivers of Children with Medical Complexity
Porter A · Journal of Pain and Symptom Management · 2024
Outcomes: 1. Participants will be able to define and summarize the major themes characterizing CMC family caregivers' experiences of rest, rejuvenation, and respite and then illustrate examples of those themes from family caregivers' stories. 2. Participants will be able to analyze the contribution of themes to family caregiver rest, rejuvenation, and respite; justify inclusion of those themes in a conceptual model for reimagined respite care; and then develop a list of key components of a possible respite care intervention. Key Message: Qualitative investigation of Massachusetts-based CMC family caregivers' rest, rejuvenation, and respite use illuminates the creative ways families find rest and rejuvenation and the limitations of the existing CMC respite care system. Importance: Even as children with medical complexity (CMC) [1,2] receive more palliative care services than any other group, their caregiving demands remain relentless and complex [3-5]. Intended to offer relief from the constancy of caregiving [6,7], respite care is rarely available and often not used, suggesting that it does not meet family caregivers' needs for rest and rejuvenation [8-15]. Few studies have explored CMC family caregiver experiences of respite care, and no research has focused on their need for and experiences of rest and rejuvenation [14,16,17]. Objective(s): The 2-phase RECHARge study (Rest and Rejuvenation Experiences among family caregivers of children with medical complexity to determine How to Augment Respite care) aims to reimagine respite for and with CMC family caregivers, using experience-near qualitative methods and experience-based co-design (EBCD) principles to advance the science of caregiver support. The objective of this first phase is to characterize CMC family caregiver experiences of, needs for, and recommendations for enhancing rest and rejuvenation from the perspectives of (a) CMC family caregivers and (b) home-based pediatric palliative care (PPC) clinicians. Scientific Methods Utilized: Purposive sampling was used to select Massachusetts-based CMC family caregivers and home-based, multidisciplinary pediatric palliative care clinicians. Semi-structured interviews focused on 8 domains of inquiry (caregiver role/responsibilities, task shifting, fatigue, sleep, rest, rejuvenation, respite experiences, COVID impact) were conducted, recorded, and transcribed. Participant observation was conducted with purposefully sampled households during 36-48 hours home stays (one per household), each with a follow-up interview with the household's family caregiver. Content analysis of interview recordings/transcripts and ethnographic field notes was performed using rapid qualitative analysis. Result(s): Twenty-five family caregivers and 15 home-based clinicians were interviewed. Three households engaged in participant observation. We identified major themes characterizing CMC family caregiver rest and rejuvenation and collected recommendations for (a) respite care intervention development and (b) measurement of effectiveness of rest and rejuvenation support. Conclusion(s): CMC family caregivers and home-based PPC clinicians offer clear recommendations for supporting rest and rejuvenation for families of children with CMC and for how to reimagine the respite care system. Impact: Both CMC family caregivers and home-based clinicians should be incorporated into future experience-based co-design (EBCD) of novel, family-centered respite interventions to support rest and rejuvenation for family caregivers. Keywords: Family caregivers/PediatricsCopyright © 2024
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.