A pediatrician’s clinical expertise, moral support and reassurance that “this too shall pass” often serve as some of the best medicine for overwhelmed parents.
However, the uncertainty and stress of parenthood do not pass for parents and caregivers of children with serious medical conditions such as cancer, rare diseases, genetic disorders, severe neurologic impairment or other chronic illnesses. Their stress is exacerbated by the complexity of their child’s care and the convoluted systems they must navigate for practical or psychosocial support.
Pediatricians can assist these parents by helping them access respite services.
Respite care is not palliative, hospice or home nursing care. It simply is extra hands for overextended parents. ARCH National Respite Network defines respite care as “planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers.”
This care can be provided in multiple settings, including the home, a nursing facility or stand-alone respite care homes (Ferragamo T, et al. J Hosp Palliat Nurs. 2022;24:E172-E182).
Parents with children who do not have serious conditions can get help from families, friends, child care and school. Many children with serious conditions cannot attend child care or school, and help must be sought from places or people able to manage complex medical needs, limiting the resources available for their parents.
While respite care can fill this gap, more than half of parents of children with complex medical conditions report difficulty accessing respite services, and 60% report they receive none (Ferragamo T, et al. J Hosp Palliat Nurs. 2022;24:E172-E182).
Pediatrician’s role
About 19% of U.S. children have a special health care need, according to the Health Resources and Services Administration. Therefore, most pediatricians care for children who need access to respite services. They can support caregivers by asking them who they turn to for extra help. Creating space for this discussion helps parents reflect on their own needs.
Pediatricians can consider encouraging parents to invite family or friends involved in caring for the child to a clinic visit to facilitate a more engaged, comprehensive and integrated approach to the child’s care.
While pediatricians don’t need to be experts on the respite infrastructure or the system of supports in their community, they should be able to direct parents to reliable organizations or individuals such as social workers, nurse case managers or specialty providers who can help navigate and secure these supports. The National Respite Locator Services (https://bit.ly/43SlZh6) is one organization that can help families find services that meet their needs.
The uncertainty and stress of parenthood are magnified for those who care for children with serious conditions. Pediatricians can ease their stress and help families thrive by facilitating stable support and advocating for improved access to high-quality respite care.
Dr. Shaw is a member of the AAP Section on Hospice and Palliative Medicine (SOHPM). Morris is a parent/caregiver collaborator with the Courageous Parents Network (CPN), which provides insight into the experience of parents caring for children with serious conditions. She also is incoming liaison from CPN to the SOHPM.
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