What Are the Barriers and Facilitators for the Self-Management of Chronic Pain With and Without Neuropathic Characteristics?

Elizabeth G. Mann, PhD, RN; Margaret B. Harrison, PhD, RN; Sandra LeFort, PhD, RN; Elizabeth G. VanDenKerkhof, DrPH, RN

Disclosures

Pain Manag Nurs. 2017;18(5):295-308. 

In This Article

Discussion

This is the first study to compare barriers and facilitators of self-management between individuals with CPNC and CP. The most commonly identified barriers and facilitators were the same for both groups; however, individuals with CPNC were at a higher risk for depression, low self-efficacy, and severe pain intensity. Most participants identified at least moderately supportive family/friend and health care provider relationships; however, many reported that they were not included as equal partners in making decisions and setting goals related to their care and informed about specific self-management actions appropriate for their condition.

The most common barriers and facilitators identified in the current literature are supported by the findings of this study. The infrequent use of the "other" category suggests that the barriers and facilitators identified in the chronic disease literature accurately portrays the challenges of chronic pain self-management. Participants with CPNC were more likely to identify multiple barriers and facilitators, including support from family and/or friends, fear of making pain worse, pain intensity, and depression or feeling low, suggesting a more complicated self-management experience compared with those with CP. Nurses providing care for individuals with chronic pain should consider these barriers and facilitators during discussion of management options, because social support, fear of pain exacerbation, and depression may be modified through peer support groups (Hogan, Linden, & Najarian, 2002), cognitive-behavioral therapies (Lohnberg, 2007), and various depression therapies (Kleiber et al., 2005, Leo, 2005).

The prevalence of depression in both pain groups (Benjamin et al., 2000, Clark, 2009, Ohayon and Schatzberg, 2010, Reme et al., 2011) as well as the increased risk of comorbid depression and severe pain with CPNC (Bouhassira et al., 2008, Mehra et al., 2012, O'Connor, 2009, Ohayon and Schatzberg, 2010, Torrance et al., 2006, Toth et al., 2009) are consistent with previous reports in the literature. The overlap in symptoms of depression and chronic pain (e.g., altered energy levels) may make identifying depression especially difficult in affected individuals and may contribute to undiagnosed comorbid depression (Aguera-Ortiz et al., 2013, Salazar et al., 2013). Nurses should consider routine screening for comorbid depression, especially when caring for individuals with CPNC, because it may impair self-management ability, result in increased use of health resources (Salazar et al., 2013), and lead to patient safety concerns through the increased risk for self-harm (Fishbain, Bruns, Disorbio, & Lewis, 2009).

Despite prior work identifying a low risk of suicidal ideation in participants with neuropathic pain (Smith, Edwards, Robinson, & Dworkin, 2004), this study identified a greater risk of thoughts of self-harm or being better off dead. This increased risk partly may be due to participants with CPNC reporting more difficulty with sleep, which has been identified as a key factor in suicidal ideation (Tang & Crane, 2006). Sleep difficulties may also explain some of the differences noted when the neuropathic group was defined by screening scores and a possible/probable neuropathic diagnosis (more stringent definition). Fifty percent of participants classified as neuropathic by this method were diagnosed with back problems, which, having been linked with sleeping difficulties (Alsaadi et al., 2011, Kelly et al., 2011), may explain the greater risk for both trouble with sleep and thoughts of self-harm.

Many participants had high levels of self-efficacy, suggesting that they perceived themselves as able to cope with and manage their pain. However, 39% of participants with CPNC reported low self-efficacy. Self-efficacy has not been previously compared between pain groups, but it has been identified as a key factor in explaining pain-related disability (Arnstein, 2000, Börsbo et al., 2010, de Moraes Vieira et al., 2014, Turner et al., 2005), thus low self-efficacy may partly explain why individuals with CPNC report greater disability than those with CP (Jensen et al., 2007, McDermott et al., 2006, Ohayon and Stingl, 2012, Toth et al., 2009). Individuals with CPNC may especially benefit from self-management interventions designed to target self-efficacy (e.g., the Stanford Chronic Pain Self-Management Program [Lorig & Holman, 2003]).

The lack of collaborative decision making and goal setting reported by participants is consistent with prior research (Barrie, 2011, Frantsve and Kerns, 2007, Tveiten and Knutsen, 2011) and suggests that current patient–clinician relationships could be restructured to optimize treatment outcomes and patient satisfaction (Frantsve & Kerns, 2007). There are limited interventions specific to individuals with chronic pain (Bieber et al., 2008, Frantsve and Kerns, 2007, Hochlehnert et al., 2006); however, a variety of collaboration-based interventions (e.g., patient decision aids) have been developed and recommended for use in general adult populations to improve safety, knowledge, overall health experience, use of health resources, and self-management (Coulter & Ellins, 2007). Research is needed to explore whether these interventions are effective in creating and supporting collaborate decision making and goal setting in chronic pain groups.

Strengths of the present study include the fact that the sample was drawn from the general population rather than a clinic sample. Lack of available resources or long waiting times for specialty care may result in individuals with chronic pain never having the opportunity to be part of a clinic sample (Nguyen et al., 2005, Triva et al., 2013). The findings of this study are generalizable to individuals with chronic pain with varying degrees of access to health services, which provides a more accurate description of self-management barriers and facilitators compared with clinic samples where individuals may already be receiving some level of care. Conversely, the survey had a low response rate (VanDenKerkhof et al., 2015) and thus the results may be biased because nonresponders may differ in characteristics that influence self-management barriers and facilitators (e.g., severely depressed individuals may be less likely to respond to a survey). The use of telephone books as the potential participant pool did not allow for the inclusion of unlisted or cellular telephone numbers and thus individuals who are young, low income, and/or employed in certain occupations (e.g., legal professionals) may not have been included (Vicente, Reis, & Santos, 2009). However, because young individuals are less likely to report chronic pain (Leadley et al., 2012, Meghani and Cho, 2009, Reitsma et al., 2012, Wong and Fielding, 2011), the exclusion of cellular phone numbers may have had a minimal effect on the age of participants. Although the survey was available in both national languages, individuals unable to read either English or French were unable to participate, which may have limited the ethnic diversity in the sample and excluded individuals with reading and writing/typing disabilities (e.g., severe rheumatoid arthritis). Ideally, identification of pain as neuropathic includes assessment of pain distribution, negative and positive sensory signs, and a lesion or disease process affecting the nerves; thus the methods used in this study (use of a validated tool) were able to identify cases of possible neuropathic pain (Mulvey, Bennett, Liwowsky, & Freynhagen, 2014) and may have mistakenly identified some cases as having or not having neuropathic characteristics. This was partially addressed by using both a possible neuropathic pain diagnosis and a positive screen score to create a more narrowly defined neuropathic group; however, both methods resulted in highly similar findings. Even with these possible limitations, the description of barriers and facilitators extends the current understanding of chronic pain self-management by identifying the different pain self-management experiences of individuals with CPNC and CP.

Implications for Nursing Education, Practice, and Research

Nurses may be able to further support chronic pain self-management by engaging individuals in decision making and goal setting related to their care and providing clear recommendations for self-management activities. The participants in this study highlighted the importance of the relationship between themselves and their health care providers by their identifying this relationship as a potential facilitator of their self-management actions. Failure to engage patients and frustration over different management goals are two challenges that have been identified in the research exploring shared decision making in chronic pain; however, this research has focused primarily on the physician–patient relationship (Frantsve & Kerns, 2007). Nurses have been identified as excelling in listening to patients (Matthias et al., 2010), which is a critical skill for understanding patients' contexts such that goals and self-management actions can be tailored to each individual (Slade, Molloy, & Keating, 2009); however, training may be needed to successfully integrate this method into routine care (Frantsve & Kerns, 2007). Lack of time and costs of ongoing education are challenges commonly cited by nurses trying to provide care for individuals with chronic conditions (Lukewich et al., 2015). Advocacy is needed to encourage organizational support for nurses to engage in this important role. Future research could explore whether nurses are able to overcome some of the previously identified challenges to successfully engaging patients in making pain management decisions and whether this engagement leads to positive health outcomes.

Nurses caring for individuals with CPNC may need to specifically assess whether low self-efficacy, fear of making pain worse, access to health care resources, and depression are acting as barriers to self-management and whether these individuals are at risk for self-harm. Time for patient assessment is often limited; however, brief screens have been developed for depression, kinesiophobia, and self-efficacy that can be self-completed either online or in hard copy before a clinic appointment such that appointment time can be focused and monitoring can continue in situations where individuals have limited access to health care resources (Cheatle, 2011, Miles et al., 2011, Woby et al., 2005). Many self-management programs address self-efficacy, depression, kinesiophobia, and other barriers and facilitators identified in this paper; thus referral to interventions based on the Flinders Program (Flinders Human Behaviour & Health Research Unit, 2010), Stanford Chronic Pain Self-Management Program (Stanford Patient Education Research Center, 2016), and Expert Patient Program (Vadiee, 2012) may be a good first step in addressing barriers and facilitators faced by individuals trying to take an active role in their health. Because access to health care resources has been identified as a potential barrier, many self-management programs are available online (Heapy et al., 2015).

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