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.

Coping with chronic complex regional pain syndrome: advice from patients for patients

“…[24][25][26] However, evidence suggests that regimens requiring long-term changes to behaviour (such as exercise and desensitisation of the affected limb(s) often two or three times a day, as well as learning to pace activities) tend to have poorer adherence. 27 Specific barriers to adherence include lack of an ability to fit into one's routine, 24,28 the belief that the changes are too time consuming and boring, 29 lack of appropriate expertise amongst healthcare professionals 23 and conflicting perspectives of patients and providers. 30 Similar issues arise with carers who lack understanding and knowledge and struggle to provide support 31 .…”

Co-creation of information leaflets to meet the support needs of people living with complex regional pain syndrome (CRPS) through innovative use of wiki technology

“…This lack of knowledge and understanding causes considerable distress for people living with CRPS. For example, participants in Rodham et al's (2012 [6] study mentioned the lack 4 of CRPS expertise amongst the health profession. The participant Justine said: "But they actually don't know the condition.…”

“…[3][4][5][6][7]. It is clear that CRPS can have a negative impact on the physical, emotional, social and financial aspects of patients' lives [8].…”

“…One obvious and potentially useful tool through which to involve this group is via the Internet. Indeed, with the rise of the Internet and social media, many people are familiar and comfortable with 6 using technologies such as email, Facebook and online forums. For those with a disabling and painful condition such as CRPS, the online environment offers a means of contributing to, and accessing information that would otherwise be unavailable to them [e.g.…”

Engagement in a newly launched online support community for complex regional pain syndrome: membership growth, header analysis and introductory messages

“…Reviews of potential treatment strategies indicate that paramedical interventions like physiotherapy can be effective, drug treatment is often used but there is mixed evidence for its effectiveness, and invasive treatments like spinal cord stimulation can reduce pain but do not improve functioning (Cossins et al, 2013;Hord & Oaklander, 2003;Perez et al, 2010). Specialist rehabilitation programmes may be particularly beneficial to help individuals control their CRPS (Rodham, Boxell, McCabe, Cockburn, & Waller, 2012).…”