Article Text

Original research
Psychological adaptation and recovery in youth with sarcoma: a qualitative study with practical implications for clinical care and research
  1. Urska Kosir1,
  2. Lucy Bowes1,
  3. Rachel M Taylor2,3,
  4. Craig Gerrand4,
  5. Rachael Windsor5,
  6. Maria Onasanya5,
  7. Ana Martins5
  1. 1 Department of Experimental Psychology, Oxford University, Oxford, Oxfordshire, UK
  2. 2 Cancer Clinical Trials, University College Hospitals NHS Foundation Trust, London, UK
  3. 3 Centre for Nurse, Midwife and AHP Led Research (CNMAR), University College London Hospitals NHS Foundation Trust, London, UK
  4. 4 Sarcoma Service, Royal National Orthopaedic Hospital NHS Trust, Stanmore, UK
  5. 5 Paediatric & Adolescent Division, University College London Hospitals NHS Foundation Trust, London, UK
  1. Correspondence to Urska Kosir; urska.kosir{at}psy.ox.ac.uk

Abstract

Objectives This study explored factors that play a role in psychological adaptation and recovery of young people with sarcoma.

Design Qualitative study.

Setting National Health Service hospitals in the UK.

Methods Using purposive sampling, participants were recruited for semistructured interviews over the telephone or face to face in order to answer questions about how cancer impacted various domains of their life. Data were analysed using a framework approach.

Results Thirty participants, aged 15–39 years with primary sarcoma diagnosis provided in-depth accounts of their experience. Emerging themes from the interviews were grouped into two overarching themes that relate to one’s adaptation to illness: individual level and environmental level. The qualitative nature of our study sheds light on meaningful connections between various factors and their role in one’s psychological adaptation to sarcoma. We devised a visual matrix to illustrate how risk and protective factors in adaptation vary between and within individuals.

Conclusions This study demonstrates that young people with sarcoma report an array of both positive and negative factors related to their illness experience. The route to recovery is a multifactorial process and a one-size-fits-all approach to psychosocial care proves inadequate. We propose that moving beyond the latent constructs of resilience and psychopathology towards a dynamic model of psychological adaptation and recovery in this population can result in optimisation of care. We offer some recommendations for professionals working with young people with sarcoma in clinic and research.

  • sarcoma
  • qualitative research
  • psychiatry
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Twitter @DrLucyBowes

  • Contributors RMT, MO, RW and CG were involved in developing the protocol; AM coordinated the running of the study and was responsible for data acquisition; UK, AM, LB, CG, RW and RMT contributed to the analysis; UK and AM drafted the manuscript. All authors critically revised and approved the final manuscript.

  • Funding This work was supported by Sarcoma UK (grant number SUK102.2016LG) and Bone Cancer Research Trust (grant number BCRT/49/16). RMT is a National Institute for Health Research (NIHR) Senior Nurse Research Leader; RMT acknowledges support from University College London Hospitals BRC. UK would also like to acknowledge the financial support from Economic and Social Research Council (ESRC) as well as Ad Futura (Slovenia).

  • Disclaimer The views are of the authors and do not necessarily reflect those of Sarcoma UK or Bone Cancer Research Trust, or the NIHR/NHS. None of the funders were involved in conducting this review or drafting this manuscript.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The Study was approved by the London Stanmore National Health Service (NHS) Research Ethics Committee (reference: 16/LO/2152; IRAS reference: 217605).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement No data are available.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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