Table 4. Themes from qualitative studies identified in scoping review of articles January 1, 1990 to June 13, 2017.
| Study | Themes Identified | Explanation of Theme |
|---|---|---|
| Buscemi et al., (2017), United Kingdom46 | The continuous influence of pain on life | Pain negatively impacts all aspects of one’s life including: work, physical and mental well-being, relationships, etc. |
| Constructing knowledge about living with CNPa | Determining what triggers pain, so individuals are able to better manage it in daily life | |
| Developing specialist practice | Providing individual input and perspectives to improve healthcare and limit the burden of living with pain | |
| Henwood et al., (2012), Canada53 | Comprehending the Perplexity of CNP | Understanding the unpredictable nature of pain and how it affects one’s physical and psychosocial well-being |
| Seeking Pain Resolution | Finding ways to alleviate suffering caused from pain, holding a belief that there is a cure for CNP | |
| Acknowledging Pain Permanence | Learning to accept and deal with pain | |
| Redefining Core Values | Considering life aspirations and learning to move forward despite living with pain | |
| Learning to Live with the Pain | A process in which one’s cognitive, emotional and behavioral approach to coping with pain was adapted | |
| Integrating Pain | Using pain management strategies in order to live an active life and discover one’s identify | |
| Lofgren and Norrbrink, (2012), Sweden56 | Pain is my problem | Pain negatively impacts multiple areas of one’s daily life including sleep |
| Drugs - the health care solution | Experiences of pharmacological treatment, increased doses or alternative drugs when medication failed | |
| The gap in my meeting with health care | Positive and negative experiences when interacting with health care staff surrounding pain management | |
| But … this works for me | Effective complementary methods and strategies for coping with pain | |
| Henwood and Ellis, (2004), Canada57 | Nature of pain | Includes types, pain onset, distribution, descriptors, severity, patterns and augmenters |
| Coping | Strategies to manage pain resulting in some adjustment | |
| Medication failure | Pain relief is not adequate and occurrence of problematic side effects | |
| Pain impact | Consequences of living with pain, how it affects daily life | |
| Zsoldos et al., (2014), Hungary64 | Building relationships/asking for help | The team-building, cohesive aspect of the program allowed for new friendships and confidence asking for/giving help |
| Hearn et al., (2015), United Kingdom65 | The chasm between biomedical perspectives and patient beliefs and needs | Reliance on insufficient medication, unmet expectations resulting in lost faith in healthcare professionals, no input into own care |
| The battle for ultimate agency in life | Inability to control pain, learning to accept/live with disturbance of pain | |
| The coexistence of social cohesion and social alienation | Sense of belonging and support from SCI community, but isolated from the able-bodied community | |
| Norrbrink and Löfgren, (2016), Sweden69 | Limitations in structure | Treatments are physician oriented and mainly pharmacological drugs, care decreases over time, lack of pain rehabilitation |
| Lack of support and competence | Lack of knowledge and support, must find information on learning to live with pain by themselves | |
| Frustrations | Distrust and lack of interest from health care team, sense of hierarchy in meetings with physicians, powerlessness | |
| Needs and requests | Knowledge about pain and living with pain, complementary treatments, support, accessibility to acute help, use of multidisciplinary teams |
aCNP, chronic neuropathic pain.