Objective: To explore what advice people currently living with chronic CRPS would offer to another person coming to terms with a diagnosis of chronic CRPS.
Methods:Semi-structured interviews with 21 adults (5 male) living with chronic CRPS who had completed a CRPS rehabilitation programme were conducted.Results: Effectively self-managing CRPS required individuals to play an active role. This could only be achieved if they felt they had sufficient control. Means of attaining control involved attaining a level of acceptance, becoming well-informed and accessing the right kind of support. The advice offered by patients for patients largely reflected that offered by healthcare professionals. One area where there was a conflict concerned sleep hygiene.
Conclusions:Our study provides support both for the argument put forward by Redman 1 that without appropriate preparation and support, self-management is ineffective, and that by Skuladottir and Halldorsdottir 2 that the main challenge of the chronic pain trajectory is that of retaining a sense of control. The clinical implications of this are discussed.
Participants' views were framed by the context of their lives and experience of their illness and these shaped their engagement with end-of-life care. Given the varying disease trajectories, care needs to be individualised and needs-based, implementing palliative care in a timely way to prevent crises and loss of autonomy.
Our findings suggest that talking to patients about assisted death may not cause harm and may even be invited by many patients with Huntington's disease. The perspectives of those who live with Huntington's disease, especially given its extended effects within families, add significant clinical and theoretical insights.
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