Developing Support Groups for Youth with Chronic Pain: Preliminary Findings Based on Patient Expectations

Social support groups have demonstrated benefits for several medical conditions, yet the literature lacks information regarding what youth hope to obtain from support groups for chronic pain. The purpose of this preliminary study was to learn about patient expectations for chronic pain support groups so that future research can ensure the provision of quality and effective services. This study aimed to obtain feedback from youth with chronic pain, as well as their caregivers, pertinent to desired content and potential barriers of chronic pain support groups. The current study assessed patient/caregiver dyads from a pediatric pain clinic using an open- and closed-ended questionnaire regarding expectations and barriers of a support group for chronic pain. Seventy-three patient/caregiver dyads completed this questionnaire. While most participants expressed interest in joining a support group, none were aware of in-person support groups available for youth with chronic pain. Participants reported effective group content would focus upon two major themes: "learning and sharing ways to manage pain and improve quality of life," and "feeling connected and forming supportive relationships with others who have similar experiences." They also identified barriers to participating in groups including time/distance, illness transmission, and counterproductive group dynamics. Results of this study indicated a need for the development of support groups for youth with chronic pain in general. Providers and future research should consider patient ideas related to potential group content or barriers reported in this study when developing support groups for chronic pain.