Parental experiences related to pediatric and adolescent chronic non-cancer pain: A qualitative exploration

Abstract

PurposeTo explore parental experiences in personal functioning and parenting associated with having a child experiencing chronic non-cancer pain. MethodsParents with children experiencing chronic pain were asked to fill out a survey prior to their initial Pediatric Pain Clinic or Pain Psychology appointment at a children's hospital in the southeastern United States. A retrospective analysis of qualitative data was conducted. Qualitative results from open-ended survey questions will be focused on within this manuscript. FindingsA total of 288 surveys were collected in this study, with 243 participants answering at least one qualitative question. Of participants who responded to open-ended survey questions, there were 88 responses to a question related to parental change, 73 to parental impact, and 239 to goals of the visit. Through thematic analysis, five qualitative themes were identified: Pain Central: The Hub, Juggling Life, Suffering Side by Side, Unrealized Dreams, and Gettin’ it Under Control. DiscussionParents do experience alterations in personal functioning and parenting as a result of having a child that experiences chronic non-cancer pain. Parents face struggles in many aspects of life including emotions, work, and interpersonal relationships. Theoretical considerations were discussed. Application to practiceUnderstanding the experiences parents have in raising a child with chronic pain is important in helping health care providers to recognize that this population may need interventions. This also assists in informing patient treatment, improving patient and parent care outcomes, and educating clinicians on how to better support parents.