Article Text

‘You are just left to get on with it’: qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis
  1. F Davies1,
  2. A Edwards1,
  3. K Brain1,
  4. M Edwards2,
  5. R Jones3,
  6. R Wallbank3,
  7. N P Robertson4,
  8. F Wood1
  1. 1Institute of Primary Care and Public Health, Cardiff University, Cardiff, UK
  2. 2School of Human Sciences, Swansea University, Swansea, UK
  3. 3Department of Neurology, University Hospital of Wales, Cardiff, UK
  4. 4Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, UK
  1. Correspondence to Dr F Davies; DaviesF9{at}cardiff.ac.uk

Abstract

Objectives Although the transition to secondary progressive multiple sclerosis (SPMS) is known to be a period of uncertainty for clinicians, who may find progressive disease challenging to objectively identify, little research has explored the experiences of patients and carers specifically during this transition period. Our objective was to explore what patients and their carers understand about their disease stage and describe their experiences and perspectives on the transition to SPMS.

Design Semistructured qualitative interviews and subsequent validation focus groups were analysed using inductive thematic analysis.

Setting South East Wales, UK.

Participants 20 patients with MS and 13 carers were interviewed. Eight patients and two carers participated in focus groups.

Results Four main themes around disease progression were identified. ‘Realisation’ describes how patients came to understand they had SPMS while ‘reaction’ describes their response to this realisation. The ‘realities’ of living with SPMS, including dealing with the healthcare system during this period, were described along with ‘future challenges’ envisaged by patients and carers.

Conclusions Awareness that the transition to SPMS has occurred, and subsequent emotional reactions and coping strategies, varied widely between patients and their carers. The process of diagnosing the transition was often not transparent and some individuals wanted information to help them understand what the transition to SPMS meant for them.

  • QUALITATIVE RESEARCH
  • REHABILITATION MEDICINE

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 and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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