Background: Previous quantitative research has shown that parents of adolescents with chronic pain report elevated levels of emotional distress in addition to limitations in social and family functioning.
Aim: This study aimed to further explore this parental impact by employing qualitative methodology to investigate parental experiences of caring for an adolescent with chronic pain.
Methods: A sample of 17 parents/carers of adolescents with chronic pain was selected from two UK tertiary clinic sites. Participants were 11 mothers, five fathers, and one grandmother (primary caregiver). Four focus groups with parents/carers were conducted to discuss the impact of caring for an adolescent with chronic pain on the parent/carer. Transcripts were analysed using interpretative phenomenological analysis (IPA).
Findings: Data analysis revealed two superordinate themes that captured the extensive, and largely negative, impact of being a parent of an adolescent with chronic pain. These themes were labelled 'struggle for control and coherence' and 'a very different life'. Both themes represent a fundamental parental struggle to adapt to a life very different than expected, a life fraught with uncertainty, fear, distress and loss.
Conclusions: Parents who are unable to achieve the relief of their adolescent's chronic pain and suffering report significant personal distress that is exemplified by the repetitive search for legitimacy of their child's pain in 'diagnosis'. In the absence of diagnosis parents reported an unwelcome suspension in an unusual pattern of parenting, resembling the infant phase of parenting.