Parent-to-parent peer support for diverse low-income families of children with disabilities: A qualitative interview study of a self-help program as part of a medical home model

Nearly one in five children in the United States has a special healthcare need and/or disability today. Families of children and youth with special needs can be vulnerable to weaknesses within the healthcare system, as services and supports for families are often uncoordinated, inaccessible, and lacking social supports. Currently, there are few organizations that help guide families of children with special needs in accessing healthcare systems and supports within the United States. This dissertation focused on the impacts of integrating a parent-to-parent peer support program to primary care medical home clinics along with outreach specialty clinics serving low-income, diverse families, including underserved and unrepresented families, of children and youth with special healthcare needs and disabilities. The program was granted to improve medical clinics for children in urban and rural areas from a Midwestern state of the United States. Peer support is a topic of interest in research on disability, and medical and mental health. It may represent an adjunct to professional services, and could offer a unique and supplemental form of helping. The purpose of this study was to identify the social exchanges that take place in a parent-to-parent support program, and investigate how they are understood and valued by the participants when parents acting as support providers join with medical personnel within the medical home model of care to serve families with children with special needs who are traditionally underrepresented and underserved. The parent-to-parent support movement has traditionally been organized by Caucasian, middle-class women throughout the United States and abroad. Recently, however, parent-to-parent programs are beginning to transform by working collaboratively with more culturally and linguistically diverse populations, which is more representative of the population of the United States than in the past. Data were collected from 24 interviews with key stakeholders taking part in the parent-to-parent support program in the Midwest. Data were systematically analyzed in multiple rounds and resulted in six themes including trust and empathy; resources and accessibility; awareness and understanding; cultural competence; mutual respect and partnerships; and empowerment and advocacy. These findings suggest that parent-to-parent support can provide culturally competent, family-centered support to families of children and youth with special healthcare needs and/or disabilities that help serve as an adjunct to traditional medical services to help achieve a medical home model of care for families.