Parenting an adolescent with complex regional pain syndrome: A dyadic qualitative investigation of resilience

Objectives: Adolescent chronic pain exists within a social context, affecting the lives of adolescents, parents, peers, and wider family members. Typically, parental research has focussed on the negative impact on parents associated with parenting an adolescent with chronic pain. However, a small number of studies have identified positive parental outcomes and functioning, with a focus on parental resilience. This study sought to extend existing knowledge by providing a detailed and contextualized understanding of how parental dyads experience and demonstrate resilience in response to parenting an adolescent with Complex Regional Pain Syndrome (CRPS) and the meaning that parents ascribe to these shared experiences.

Design: An Interpretative Phenomenological Analysis (IPA) was used to conduct an in-depth qualitative interview study of parents of an adolescent with CRPS.

Methods: Semi-structured interviews were conducted via Skype with eight mother-father parental dyads of an adolescent aged 11-25 years with CRPS.

Results: A single prominent theme 'masking reality in the face of pain' dominated the parental discourse and experience of resilience. Resilience was experienced as an incongruence between private distress and the perceived obligation to display socially desirable resilience behaviours to protect their child from their own distress.

Conclusions: Study findings highlight the benefits of strength-based interventions to enhance parental resilience. This is particularly important since parental behaviours have been shown to influence child pain outcomes. Future research should seek to explore resilience in different populations such as lone parents, siblings, and those parenting an adolescent with pain conditions other than CRPS.