Transitioning from a hospital rehabilitation programme to home: Exploring the experiences of people with complex regional pain syndrome

Abstract

Complex regional pain syndrome (CRPS) is difficult to diagnose and is characterised by burning pain in one or more limbs. Treatment is palliative not curative and focuses on improving function. This requires patients to make long-term changes to their behaviour. As with all such regimens, adherence is often poor. This study explored the lived experience of 10 patients who had returned home after completing a two-week in-patient treatment programme. The interviews focused on how they coped with the transition from hospital to home, and on the things that they considered had facilitated or hindered this transition. Battling for Control was an overarching theme that connected the four superordinate themes: ‘Gaining Momentum’ that facilitated the implementation of treatment advice, ‘Distance from the pool of expertise’ that detailed the barriers to adherence experienced; ‘It helped me realise it was not all in my head’ that detailed a facilitative process, and the ‘nag list’ that was a technique patients’ used to garner support. This article offers insights into the transition experience. A key outcome is the recognition of the need to better prepare patients for their transition back home.

Keywords:

• adherence
• complex regional pain syndrome
• coping
• interpretative phenomenological analysis

Acknowledgements

We thank the participants for sharing their time and experiences. We should also like to thank the Royal National Hospital for Rheumatic Diseases Donated Funds Committee for funding this research (project number RB284).