The Development and Co-Production of a Caregiver Coping Resource for Pediatric Inflammatory Bowel Disease and...

Caregivers of children with chronic conditions have mental health needs, with no known resources for caregiver coping in pediatric Inflammatory Bowel Disease (IBD) and autoimmune liver disease (AILD), which can be co-morbid. Quality improvement (QI) has previously co-produced resources within Learning Health Networks (LHNs). This QI work sought to co-produce a caregiver coping resource for caregivers of children with IBD and/or AILD.

A multidisciplinary QI team of caregivers and psychosocial clinicians applied QI methodology to iteratively develop a caregiver coping resource. This work took place within two connected LHNs, ImproveCareNow (pediatric IBD) and Autoimmune Liver Disease Network for Kids (AILD).

Over 1.5 years, a multidisciplinary QI team of eight caregivers and four psychosocial clinicians co-produced a caregiver coping resource. The formatted caregiver coping resource is 164 pages long with sections including caregiver coping (e.g., anxiety), caregiver support of child coping (e.g., discussing emotions), special considerations (e.g., surgery in IBD), and logistical topics (e.g., navigating insurance). The resource integrates caregiver and psychosocial clinician quotes and reputable resources. The resource is freely available and information about how to access the resource is included in the manuscript text.

While caregivers of children with IBD and/or AILD have known coping needs, caregiver-focused coping resources are urgently needed. A multidisciplinary team of caregivers and psychosocial clinicians within LHNs co-produced such a resource that is freely accessible. This QI work demonstrates the collaborative potential to build caregiver-focused resources for all families to benefit. Future work is needed to understand the clinical use of this resource as well as the impact of this resource for caregivers of children with IBD and/or AILD.