RPD220 - Co-design of a Parent-to-Parent Respite Navigation Intervention for Parents of Medically Complex Children

Key Message : Experience-based co-design (EBCD) with community partners refined a parent-to-parent respite navigation intervention. This coalition included parents of children with medical complexity (CMC), home care nurses, interdisciplinary clinicians/researchers in pediatric palliative/complex care, and state government and Medicaid representatives. Additional deliverables included a parent navigator curriculum, support resources, and community partner-driven outcomes.

Abstract: Introduction/Context
Parents of children with medical complexity (CMC) have few breaks over decades of constant caregiving, compromising their well-being and caregiving capacity (1,2). Parents prioritize respite – short-term care offering parents reprieve – as a crucial unmet need (3,4), yet alarmingly few have respite access (6,7).

Objectives
To refine a parent-to-parent respite navigation intervention; generate a parent navigator training curriculum, intervention manual, and support resources; and develop quantitative outcome measure sand qualitative evaluation tools.

Methods
This qualitative study used experience-based co-design (EBCD) with a Community Partners Committee, which met virtually for four, 90-minute design meetings, each focused on sequential co-design steps: (1) intervention refinement, (2) recruitment and retention strategies and outcome/evaluation tool development, (3) curriculum design and parent navigator support resources, (4) synthesis and finalization of intervention. Content analysis between each session identified formative feedback and emergent themes.

Results
Twenty-three community partners joined the EBCD process, including 3 parent caregivers of CMC: 2 home-based clinicians, 3 resource specialists, 4 pediatric palliative/complex care experts, 3 bereaved parent advocates, 3 government representatives, and 3 researchers. The EBCD process identified 7 themes: (1) Allow time to build rapport before respite navigation; (2) Embed into existing public health, Medicaid, and/or NGO structures for optimal efficiency/effectiveness; (3) Recruit via clinical, community, or school teams; (4) Ensure contextual concordance in recruitment; (5) Include mixed methods to integrate quantitative outcomes and nuanced feedback beyond what is measurable; (6) Incorporate both factual information about respite access and tools for communication; and (7) Offer navigators practical/emotional support resources.

Conclusion
Experience-based co-design with community partners – including parent caregivers – guided the refinement and materials development for a parent-to-parent respite navigation intervention. This process aims to optimize the intervention's acceptability and efficacy in future clinical trials.

References: 1. Fraser LK, Murtagh FEM, Aldridge J, et al. Health of mothers of children with a life-limiting condition: A comparative cohort study. Arch Dis Child. 2021;106(10):987-993. doi:10.1136/archdischild-2020-320655

2. Suzuki S, Kamibeppu K. Impact of respite care on health-related quality of life in children with medical complexity: A parent proxy evaluation. J Pediatr Nurs. Published online July 2022. doi:10.1016/j.pedn.2022.07.009

3. Rao SR, Gupta M, Salins N. The Concept of Respite in Palliative Care: Definitions and Discussions. Curr Oncol Rep. 2021;23(2). doi:10.1007/S11912-021-01015-Z

4. Whitmore KE. The Concept of Respite Care. Nurs Forum (Auckl). 2017;52(3):180-187. doi:10.1111/nuf.12179

5. Whitmore KE, Snethen J. Respite care services for children with special healthcare needs: Parental perceptions. Journal for Specialists in Pediatric Nursing. 2018;23(3). doi:10.1111/jspn.12217

6. Weaver MS, Shostrom VK, Kaye EC, Keegan A, Lindley LC. Palliative Care Programs in Children’s Hospitals. Pediatrics. 2022;150(4). doi:10.1542/peds.2022-057872

7. Ferragamo T, Pituch KJ, Sorkin T, et al. A Narrative Review of Pediatric Respite Care Initiatives in the United States. Journal of Hospice and Palliative Nursing. 2022;24(4):E172-E182. doi:10.1097/NJH.0000000000000867