Building the evidence for CRPS research from a lived experience perspective

Abstract

Background and aims Pain is known to be a subjective experience yet the majority of pain related research does not address the lived experience of the condition. Difficult to diagnose, Complex Regional Pain Syndrome (CRPS) is often poorly managed. The aim of this paper was to identify and synthesise the currently available literature on experiences of living with chronic pain in order to understand where and how CRPS research may be best situated in the future. Methods A narrative review was performed and ProQuest, EBSCO, Informit, Scopus/Science Direct and Web of Science, Medline, CINHAL and Google Scholar were searched in order to identify the literature from 1998 until 2015. 301 papers were identified of which 197 described the lived experience of chronic pain conditions. 12 papers were examined closely to determine the experience of living with CRPS or a similar chronic pain condition that does not have a definite pain origin such as cancer or endometriosis. Results Known understandings of pain were identified and a model was developed depicting the lived experience of chronic pain starting with loss of the former healthy, pain free self and culminating in acceptance of the condition. Major themes identified were disbelief/invisibility of pain, loss, coping with a non-compliant/constant painful body, self-management and alleviating pain/treatment. The review also found that there is no peer-reviewed published literature on the lived experience of CRPS. Conclusions Little is known about the lived experience of CRPS. There appears to be a clear indication that research needs to be conducted into CRPS from a lived experience perspective in order to provide information to patients, the general public, health practitioners and policy makers of previously unknown characteristics of this condition which may improve health outcomes for this patient cohort. It has been identified that patients and their families should be active participants in education of health practitioners and in providing information to inform the development of National Pain Strategies currently being devised throughout the world. Implications Research into the lived experience of chronic pain conditions, and CRPS in particular, can help to provide information to enhance understanding enabling national pain strategies and future treatment guidelines strategies to be devised appropriately.

Patient Work and Their Contexts: Scoping Review

“…Work tasks included in category 2 are not so much about managing one’s symptoms, but work that enables patients to manage their symptoms better in the future. Create mental coping strategies [ 14 , 18 , 20 , 40 , 43 , 45 , 46 , 48 - 51 , 61 , 75 - 80 , 83 - 89 ] included overcoming emotional barriers [ 18 ], drawing upon spiritual beliefs [ 78 ], eventually coming to terms with a new body and a new normal [ 14 , 20 , 87 , 89 ] that enables patients to proactively engage with treatment. Patients also looked for relevant knowledge, either from written literature or by asking other people, in work tasks under learning about the disease [ 16 , 20 , 42 , 48 , 57 , 59 , 60 , 64 , 67 , 73 , 74 , 78 , 80 , 81 , 84 , 90 ].…”

“…This category included tasks where patients sought help from other people, including seek medical help [ 2 , 14 , 18 , 40 , 41 , 44 , 49 - 52 , 58 , 65 , 75 , 79 , 80 , 83 , 89 , 93 , 96 , 97 ], ask for help from family and friends [ 18 , 40 , 46 , 47 , 50 , 51 , 57 , 60 , 63 , 67 , 69 , 73 , 77 , 93 , 95 , 98 ], hire professional help [ 20 , 43 , 52 , 69 , 95 , 98 ], and consult complementary therapy [ 58 , 59 , 64 , 66 , 84 ]. This category also included unplanned interactions, such as visits to the emergency department [ 41 , 89 ].…”

“…Patients in our review reported a variety of emotional and mental influences that altered their actions, indicating their motivation and belief in their capacity was sometimes more important than the resources available to them. Patients experiencing different health conditions were affected by common emotional states, such as fear of medication side effects and dreading the future [ 67 , 69 , 71 , 75 , 80 ]. As an element of concern, patients in our scoping review rarely reported consulting mental health professionals about these fluctuating emotions, opting instead to brave through on their own [ 45 , 58 , 60 , 71 , 75 , 96 ].…”

Patient Work and Their Contexts: Scoping Review (Preprint)

“…1 tasks made up a large portion of the instances of patient work tasks identified in the included studies, with the most prevalent tasks being planning[18,20,40,[44][45][46][47][48][49][50][51][52][53][54][55][56][57] and proactive management of risks[20,[40][41][42][45][46][47]49,50,52,. ,20,48,55,57,58,61,64,70,[79][80][81][82]). Despite the volume of work in this category, patients do not often discuss such tasks with others, making such work unacknowledged and sometimes taken for granted by the patient and their families, receiving very little organizational or psychological support.…”

“…new normal[14,20,87,89] that enables patients to proactively engage with treatment. Patients also looked for relevant knowledge, either from written literature or by asking other people, in work tasks under learning about the disease[16,20,42,48,57,59,60,64,67,73,74,78,80,81,84,90]. Intellectual endeavors to understand the implications of symptoms[52] are also included here.…”