Posted June 5, 2015
Eva G. Widerstrom-Noga, D.D.S., Ph.D., University of Miami
A major cause of disability in individuals with spinal cord injury (SCI) is chronic neuropathic pain, which causes shooting and burning pain, tingling, and numbness. Many with SCI and chronic pain respond poorly to standard pain treatments, but not enough is known about chronic pain's underlying mechanisms or about barriers and facilitators of successful pain management in people with SCI. Poor pain management can result in an increased risk for depression and lower quality of life. Understanding the lives of those with SCI is a goal of research being conducted by Dr. Eva Widerstrom-Noga, who received a fiscal year 2011 (FY11) Qualitative Research Award from the Spinal Cord Injury Research Program (SCIRP). In her research, Dr. Widerstrom-Noga listens to individuals with SCI talk about their own experiences and expectations, looking for ways to improve treatment strategies.
To approach the problem of chronic neuropathic pain, Dr. Widerstrom-Noga and colleagues are conducting a two-phase qualitative research study. In Phase 1, investigators held face-to-face interviews with 35 Veteran and non-Veteran participants to gain in-depth insight into the personal perceptions and experiences of living and coping with chronic pain, including its impact on activities, treatments, self-remedies, access to health care and information, and the role of their social support. Responses were analyzed to identify key barriers and facilitators to optimal pain management, which were then used to design a survey for Phase 2 of the study. In Phase 2, investigators are surveying a larger group of up to 500 persons with SCI and chronic pain to confirm the significance of information learned from Phase 1, and to evaluate how various other factors (time since injury, injury severity, demographics, sex, military service status, etc.) affect their experiences.
Phase 1 results revealed several critical areas that influence the impact of chronic pain, including combinations of physical, emotional, financial, educational, and social-related factors. Barriers to successful pain management were identified in four different areas: financial/insurance (i.e., treatment availability), lack of professional involvement and understanding by professional care providers, perceived lack of expertise or time by professional care providers, and poor information and communication with professional care providers. Facilitators of successful pain management were identified in three areas: clinic type (e.g., quality of care), professional involvement and expertise, and professional understanding of pain and pain treatments specifically in people with SCI. For example, the perceived effectiveness of pain management by SCI patients seems significantly influenced by the time, empathy, and understanding these persons receive from their caregivers and healthcare providers. Responses suggest that when people feel that they are listened to and kept informed of medical options and decisions, they also feel more confidence and in control of their pain management, reducing the overall impact of having chronic pain. Yet some participants reported that before joining the study, they had never been asked about their pain and, in fact, hadn't talked about their pain in depth with anyone.
Preliminary analyses of Phase 2 data both confirm and reflect further detail of perceived barriers and facilitators. The most significant perceived barriers to successful pain management include constancy of pain, lack of access to non-pharmacological pain management options, pain severity, and loss of sleep due to pain. The most important perceived facilitators to successful pain management appear to focus on understanding of SCI-related chronic pain by both those with SCI and their caregivers. As data collection and subsequent analyses continue, the information and knowledge gained has the potential to change how chronic pain in individuals with SCI is managed.
With a new FY14 SCIRP Qualitative Research Award recommended for funding, Dr. Widerstrom-Noga and colleagues plan to extend their work to include experiences of family members and healthcare providers of individuals with SCI in hopes of identifying additional barriers and facilitators in SCI-related chronic pain management. When all the studies are completed, her team will develop and release a guide for people with SCI, their significant others, and healthcare providers to help those individuals with SCI-associated chronic pain obtain an effective pain management strategy and optimal quality of life - despite chronic pain.
Qualitative research describes the characteristics of the population and/or situation being studied, including the population's interpretations of their experiences. It can help researchers and clinicians better understand the experiences of individuals with SCI with the goals of identifying best paths for adjusting to disability and improving overall quality of life, health and functional status after SCI.
FY15 Qualitative Research Award pre-applications are now being solicited, due July 13, 2015.