Judy Peters1, Gill Craig1
1) United Kingdom
Background: Chronic pain in young people (YP) can cause considerable suffering, disability, disruption to family life, failure to attain full potential and have life-long consequences. However little is known of how YP with chronic pain feel they are being helped.
The aim of this study was to explore perceptions of who is helpful to YP with chronic pain attending a specialist clinic.
Methods: Qualitative, semi-structured interviews and focus groups were conducted with ten family dyads/triads of YP with chronic pain, and thirteen specialist health care professionals (SHCP) in a central London hospital. Participants undertook an exercise to model “Who helps a YP in chronic pain?”, by placing labelled tokens on a board.
Analysis: Thematic analysis was undertaken using a six phase process. Models were photographed and later analysed.
Findings: Views were diverse, however a majority of YP modelled family members as their main source of help. YP's models included at least one health care professional, frequently from a local, rather than a specialist service. Most YP identified their mother as their main source of help; a minority said their father was helpful. Many YP were reluctant to disclose their pain to others and several remembered little of what occurred at clinic appointments.
Parents generally made little modification to the YP's model of help. Views of professionals were polarised, with good and bad interactions described. Most families sought help from alternative health practitioners in addition to conventional medicine.
SHCPs endorsed the benefits of a multi-disciplinary team helping YP, with many rating their help as equal to that offered by family members.
Conclusions: Parents and YP shared similar views of who helps, describing much family self-reliance. While mothers provide much support, consideration is needed of how better to facilitate fathers' helping YP with chronic pain. SHCP placed greater emphasis on professional support.