Families Supporting Families
Families of children with chronic conditions often seek support from other, more experienced families of children with similar conditions. While some research has shown the benefits of Peer Support, not much is known about when health care providers make such referrals, how or why families access support, and how health care systems can facilitate quality support provision.
Self-Management Support
SMS for Children and Youth with Special Health Care Needs (CYSHCN) includes the activities and assistance provided to increase families’ skills and confidence in managing their children’s health. Little is known about the extent to which SMS is provided in pediatric care, although there is agreement that it is necessary for positive health outcomes of the child.
- AFFIRM California - Currently underway, this large study is recruiting respondents at 16 participating pediatric primary and specialty care clinics throughout California (over 800 participants). It aims to (a) validate the assessment instrument developed in the pilot study with a diverse population, and (b) gain a better understanding about the types of SMS provided to patients in Community Health Clinics and Large Specialty Care Centers. Gaps in SMS identified through this study can inform policies and practices aimed at better serving families of CYSHCN.
Access to Care
It is well-known that the US is experiencing a shortage of health care providers, most critically pediatric specialists, which presumably leads to longer wait times for patients and less access to necessary health care. More research is needed to quantify these effects and identify potential ways to address them.
