Discovering which outcomes are the most Important to young people and their parents when receiving treatment for persistent pain

Abstract

Outcomes that are measured within children’s services should reflect the priorities of young people and their parents. Despite global and national policies that state all young people should be given the opportunity to be heard and their views considered, it is currently unknown which outcomes have meaning and importance to young people experiencing persistent pain. The present study sought the opinion of twenty-one parents and twenty-one young people aged 11-18-years-old who were having treatment for persistent pain in two different hospitals. Using novel methods informed by Q-methodology, interviews were completed in person or if preferred, with online methods, and incorporated drawing a timeline that symbolised the treatment journey from beginning to end. Important positive and negative changes (outcomes) were highlighted, and top priorities described. Thematic analysis identified six themes. The themes “perfect storm” and “free” emerged at the start and end of treatment in both the narratives of young people and parents. It was during treatment that change occurred, and the highest number of outcomes were identified. Themes during treatment reflected key shifts in beliefs, control and mind-set: for young people these were “turning points” that could connect or “disconnect” them from their ideal end-point. These shifts were influenced by relationships, the environment and pivotal moments and appeared central to the young person’s recovery. For parents, these shifts could move from a position where parents were “fighting in the dark” to “drawing a line under it”. Parents consistently prioritised outcomes relating to the treatment experience (getting a diagnosis or access to services or treatments) whereas young people prioritised outcomes relating to their role functioning (hobbies, sports and going out with friends). Ultimately the decision to change came from the young person. The perceived stage of journey mattered and influenced the outcomes that were prioritised.

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Identifiers

ORCID for Rhiannon, Louise Joslin: orcid.org/0000-0002-3712-3341

ORCID for Lisa Roberts: orcid.org/0000-0003-2662-6696

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