Families of children and youth with special health care needs (CYSHCN) highly value their connections to other families in similar circumstances. Other families and family-led organizations are viewed as the most consistent, reliable, and experienced sources of guidance and support. Peer support by veteran parents and caregivers offers personal, ongoing assistance, usually on a volunteer basis, that is not typically or readily available from health care professionals. Caregivers who receive peer support feel less isolated and have increased confidence and well-being, problem-solving capacity, self-esteem, and acceptance of their situation. Anecdotal reports suggest that many families are unaware of the availability of peer support long after their child has been diagnosed.
We are exploring whether and how to increase access to peer support for these families. Most CYSHCN receive their care from pediatric subspecialists who typically practice at academic medical centers or in large group practices. Those pediatricians and their staff are perfectly positioned to initiate referrals to sources of peer support. However, their opinions about referring patients’ families to peer support and whether they make such referrals is unknown.
Before launching an initiative to make peer support more available, we sought to better understand how practicing pediatric subspecialists in California think about and refer families to peer support resources. In collaboration with Mathematica, senior adviser Dr. Edward Schor, and project manager Dr. Tali Klima of Practical Research Solutions, we designed a short, online, confidential survey instrument that assessed physicians’ peer support attitudes and behaviors, as well as practice and practitioner characteristics. The questions we hoped to answer from this 2022 study include:
- What are pediatric subspecialists’ current opinions and referral behaviors regarding peer support?
- Is there an association between pediatric subspecialists’ opinions and their referral behaviors?
- Are certain types of subspecialty practices (size, affiliation, staffing) more or less likely to facilitate referrals to peer support services?
- Are certain subspecialties or practice settings more or less likely to facilitate peer support?
- Are there individual characteristics of subspecialists that are associated with facilitation of peer support?
Download a summary of the survey results
Professional organizations that endorsed the survey include California Children’s Specialty Care Coalition, the American Academy of Pediatrics California and its four chapters, California Children’s Hospital Association, and the California Association of Neonatologists.
As a follow-up to the study in 2023, Mathematica has conducted in-depth interviews with survey respondents or their identified staff members to learn about how referrals for peer support for families of CYSHCN occur in pediatric subspecialty practices across California, and to identify any factors that may facilitate or impede the referral process. Additional work is underway to collect information from families and caregivers on their experiences with peer support referrals.