Supporting Parents of Youth with Chronic Pain: A Mixed Methods Evaluation of a Supportive Educational Intervention

TL;DR

An 8-week virtual program for parents of children with chronic pain improved their knowledge, coping, and emotional wellbeing.

Contribution

Demonstrates the effectiveness of a virtual supportive educational program for parents of youth with chronic pain.

Findings

The Creating Bonds program significantly improved parents' understanding of chronic pain and self-care.

Parents reported reduced stress, anxiety, and confusion about parenting a child with chronic pain.

Qualitative feedback highlighted the program's validating and educational impact.

Abstract

What are the main findings?
Creating Bonds, an 8-week program for parents of youth with chronic pain, was effective and beneficial in improving parents’ knowledge, coping, and emotional wellbeing.Collectively, parents described the program as educational, validating, and transformative, emphasizing the dual benefit of actionable tools and psychosocial support.

Creating Bonds, an 8-week program for parents of youth with chronic pain, was effective and beneficial in improving parents’ knowledge, coping, and emotional wellbeing.

Collectively, parents described the program as educational, validating, and transformative, emphasizing the dual benefit of actionable tools and psychosocial support.

What are the implications of the main findings?
Parent-focused interventions are a critical and effective component of pediatric chronic pain care.Virtual parent programs are feasible, scalable, and capable of reducing barriers to care.

Parent-focused interventions are a critical and effective component of pediatric chronic pain care.

Virtual parent programs are feasible, scalable, and capable of reducing barriers to care.

Background: Parents of youth with chronic health conditions face several challenges in supporting their children across contexts. Involvement of parents in a child’s pain management approach is accepted as best practice, yet there is little guidance on how to best parent the child with chronic pain. Prior studies have shown that parents require support and education to effectively care for their children and themselves. This quality improvement program evaluation aimed to evaluate group-level: (1) feasibility of the Creating Bonds program, (2) acceptability and perceived effectiveness of the program, and (3) suggestions for program improvements. Methods: In this quality improvement program evaluation, parents (N = 40) of youth with chronic pain from the United States and Europe were recruited online to participate in a virtual peer-support and educational program, Creating Bonds, offered through the nonprofit organization, Creative Healing for Youth in Pain. Creating Bonds is an 8-week, virtual, supportive, and educational program for parents and caregivers of youth with chronic pain led by a licensed clinical psychologist. A mixed methods approach evaluated the impact of and suggestions for improving the program. Independent samples t-tests were used to examine quantitative items related to understanding of pain, isolation, confusion, distress, relationships, and self-care. Qualitative responses were evaluated for common themes through an inductive thematic analysis. Results: Results indicated that Creating Bonds significantly improved parents’ level of understanding of chronic pain, relationships with others, and self-care, and significantly reduced confusion about parenting a child with chronic pain, stress, and anxiety levels (ps < 0.05). Levels of isolation moderately decreased. Parents qualitatively described the experience as validating, connecting, and educational, with both emotional relief and practical strategies emerging as benefits. Conclusions: Quantitative results and qualitative themes capture the dual role of the Creating Bonds program in providing tangible parenting tools alongside education and critical psychosocial support. Parents entered with uncertainty, a desire for strategies, and hope for connection, and they came away with validation, practical parenting tools, and a community facing similar experiences.