The presence of pain and its impact on functioning and disability in manual wheelchair users with spinal cord injury : A framework for self-management

Abstract

A spinal cord injury (SCI) is a life-changing event that results in approximately 80% of affected individuals experiencing clinically significant chronic pain. The presence of nociceptive or neuropathic pain negatively affects people with SCI’s physical, psychological and social functioning. One-third of people with SCI (PWSCI) experience severe pain and are consistently rated as one of the most difficult problems to manage. There is a high risk of pain medication misuse and poor mental health and PWSCI report worse perceptions of overall health, community integration, and lower quality of life and leisure activities. This study aimed to determine the presence of pain in the South African context and its impact on functioning and disability as well as to develop a guided framework for pain self-management for manual wheelchair users with SCI.

This was a mixed-method study, which used an explanatory sequential approach in three phases. Phase I was quantitative and used a correlational design to determine the presence of pain in PWSCI. Biomechanical and psychosocial factors were assessed to determine factors related to pain in PWSCI. Data analysis included summary statistics from the overall group of PWSCI and testing was done at the 0.05 level of significance using the SPSS v27. In Phase II, a qualitative approach with interviews was used to explore the perception and experience of pain by PWSCI. Data were analysed thematically using MAXQDA v2020. In Phase III, the results from Phase I and Phase II were used to develop a guided framework for pain self-management. The framework was validated using a modified Delphi study. Descriptive data were analysed using the SPSS v27, while qualitative data from the open-ended questions were analysed using inductive thematic analysis.

Quantitative results from 122 participants showed that pain is a significant problem in the South African SCI population with 85% of PWSCI reporting the presence of pain. Neuropathic pain was the most common type of pain reported (62.5%), mainly burning in nature (32.7%) and below the level of injury (39.4%). The average severity of pain was 6.7/10, and although most of the participants tried to avoid pain medication (51.9%), those who took pain medication displayed serious aberrant drug-taking behaviour and risk of future problematic use (p < 0.001). Opioids in combination with other types of medications such as anticonvulsants and non-steroidal anti-inflammatories were the most prescribed medication used by PWSCI (44.0%). Few participants reported having shoulder pain (37.5%), and there was no association between shoulder biomechanical factors and the presence of shoulder pain. The presence of shoulder pain did not influence wheelchair function or quality of life, however, the severity of pain was linked to decreased quality of life and decreased sleep satisfaction. The qualitative results indicated that PWSCI perceived SCI-related pain as attacking, persistent and interfering with life. Most of the participants were not achieving pain relief with their chosen coping strategies. The findings from both the quantitative and qualitative approaches in this study informed the development of the guided pain self-management intervention framework, a tool that can guide both healthcare providers and PWSCI in selecting appropriate and effective ways to treat pain after SCI.