A spinal cord injury (SCI) results in partial or complete loss of motor and/or sensory functions below the level of injury and results in common secondary health conditions (SHCs), including pain, pressure ulcers as well as urinary and bowel complications.^1,2 Secondary health conditions are debilitating and worsen the experience of disability for people with spinal cord injury (PWSCI) by negatively influencing their dignity and independence.³ The SHCs also cause PWSCI to consult more with health professionals and cause multiple readmissions to the hospital.^4,5 Approximately half to two-thirds of PWSCI experience pain, which is an unpleasant sensory and emotional experience that is associated with either actual or potential tissue damage.^6,7 Pain often commences within the initial 6 months after SCI, with the possibility of being aggravated over time.⁸ The experience and perception of pain may be intense and reported as severe to extreme, negatively affecting health satisfaction and interfering with activities of daily living.^9,10 The multifactorial pattern of pain ultimately affects how patients react to pain and respond to pain management. In addition, the different underlying mechanisms of pain further challenge pain management.¹¹ For example, pain management can be further complicated by a variety of emotional, behavioural and social factors that can negatively affect the experience of pain.¹² The severity of pain is influenced by various factors such as genetics, comorbidities, current psychological state, prior experience of pain and socioeconomic circumstances,¹³ and treatment is rarely aimed at all associated factors of pain, resulting in ineffective treatment strategies.¹⁴ Despite the challenges, management of pain is essential, and without intervention, PWSCI may experience additional losses in function and community mobility.¹⁵

Pain management interventions following SCI include task modifications, therapeutic treatments, and pharmacological and surgical options. Therapeutic interventions such as physiotherapy are recommended as first-line treatment¹⁶ with a wide range of therapeutic interventions such as thermotherapy, electrotherapy, massage and exercises.¹⁷ Despite recommendations, pharmacological treatment of pain remains the mainstream choice of pain management in the spinal cord population. However, PWSCI still report that significant pain relief is difficult to achieve, with pharmacological treatments providing very minimal pain relief.¹⁸ Corticosteroid injections and surgical interventions (such as rotator cuff repairs in the shoulder) are only considered as a last resort to manage severe pain. Surgical intervention is often unsuccessful in PWSCI because of the extended 6-week period of rest required after surgery.¹⁴ The strict protocols post-surgery hinder independence in wheelchair use¹⁹ and create a high risk of developing potential SHCs such as pressure ulcers when on bed rest.

Pain is the most common reason for medical visits to primary health care practitioners,²⁰ and frequent visits for pain-relieving interventions may not be logistically and financially feasible, especially for affected individuals from low-income households.²¹ Coupled with findings that self-management tasks and skills incorporated into daily life reduce SHCs, it is unsurprising that self-management programmes are steadily being more common.^22,23 Furthermore, literature has highlighted the need for increased self-management efforts for PWSCI to reduce overall SHCs.²⁴ Self-management is defined as the ‘individual’s ability to manage symptoms, treatment, physical and psychosocial consequence and lifestyle changes inherent in living with a chronic condition (p. 178).’²⁵ Self-management interventions may refer to a single or combination of approaches that PWSCI can learn (or be taught by any health professional) to enable them with the skills to reduce the impact of the pain on their everyday life.²⁶ Behaviour therapy, relaxation techniques, stretching and exercises are among the wide variety of self-management techniques identified to relieve pain.²⁷ Self-management also includes the ability of affected individuals to monitor their pain condition and their behavioural, cognitive and emotional responses.²⁸ Self-management includes problem-solving, decision-making, using resources, communicating with health professionals and taking action when needed.²⁹ People with SCI must have self-management programmes targeted at all three categories because of the complexity of SCI, which often present with multiple chronic conditions.³⁰

Self-management of chronic pain requires that affected individuals distinguish themselves from the pain they experience so that they do not define themselves by their pain.³¹ Barriers to self-management include the overwhelming effort to manage pain, unsupportive family members or health professionals, and limited problem-solving abilities.^31,32 There is a need for increased self-management efforts by both healthcare providers and PWSCI to reduce SHCs in PWSCI,³³ and this study aimed to develop a guided pain self-management intervention framework from the perspective of HCPs working with PWSCI.

This study derived an expert consensus list of interventions to include in a guided pain self-management intervention framework for PWSCI. The overall response rate was 73.9% across the three rounds, which is slightly lower than the 80% overall response rate from studies reviewed by Gargon et al.⁸⁵ Literature has found that a higher number of items tend to result in lower response rates in subsequent rounds and vigorous strategies, such that up to four reminders are necessary for higher response rates.^77,78

The final framework consists of 56 interventions that are appropriate for nociceptive and/or neuropathic pain and span across the different domains of the biopsychosocial model. Lifestyle modification was the only intervention that received unanimous agreement from experts in the first round, suggesting that the need for individual-based management may be more important than medical, psychological or therapeutic interventions in isolation. Lifestyle changes are person-specific and may include changes to alcohol use, smoking, as well as leisure-time physical activity, and diet among others. Excessive alcohol use is associated with increased pain severity and interference,⁷⁹ while cigarette smoking is found to have both causal and reciprocal effects on pain in the general population⁸⁰ and worsening pain in PWSCI.⁸¹ Increased leisure-time physical activity as well as physical activity targeted at weight loss is associated with decreased pain levels and improved health satisfaction in PWSCI.^82,83,84 Lifestyle changes can be achieved by using self-management programmes that focus on behaviour change.⁸⁵

The majority of the psychological interventions reached ≥ 90% agreement including cognitive behavioural therapy (CBT), mindfulness, psychological control techniques and psychological educational management, which are some of the most common self-management interventions.^27,32 Although included in the final framework, many of the pharmacological interventions only reached consensus in the second round following the inclusion of literature evidence. This is unsurprising as the panel of experts only consisted of one pharmacist and four medical doctors. Tricyclic antidepressants and NSAIDs were the only groups of medications that were agreed on in the first round. Although this may seem as if the experts did not, at first glance, agree for all groups of medications to be part of self-management, likely, tricyclic antidepressants and NSAIDS are still known by the experts to be first-line pharmacological interventions for neuropathic and nociceptive pain, respectively. Although NSAIDs remain appropriate for nociceptive pain, anticonvulsants such as pregabalin are now the first-line medication for neuropathic pain.^85,86 The content analysis identified that medication should be appropriately prescribed and will only be useful when used as prescribed and only under the guidance of a health professional. Inappropriate medication prescription is a public health concern, especially in vulnerable groups such as the elderly and people with disabilities.⁸⁷ Prescribers should, therefore, take care to not only prescribe appropriately but also address the adverse outcomes of prescribing medication.⁸⁸ Pain medication misuse is common in PWSCI and the risk is greater for those with increased pain severity.⁸⁹ Prescribers need to also consider alternative interventions to reduce the potentially catastrophic consequences of pain medication misuse (such as death from overdosing).

Although the interventions that were eventually excluded did not reach a consensus to be excluded from round one, there was consistent agreement among experts to exclude tourniquet application, surgery, recreational cannabis and electrotherapy in non-innervated areas. There was a major safety concern when PWSCI need to be performing some interventions that were suitable for self-management without supervision. Indeed, maintaining control over one’s care is a facilitator in self-management;³³ however, techniques need to be performed correctly to not only be effective but also to prevent injury. The inclusion of the tourniquet application was a surprise to many experts, as this is a known intervention to stop blood supply and can be dangerous in individuals with already poor blood circulation and impaired sensation. Tourniquets are only applied during surgery of the limbs and are already known for possible nerve, muscle and skin injury.⁹⁰ One person with SCI used this technique to ease neuropathic pain below the level of injury. A panel discussion by Evans et al.⁹¹ concluded that blood flow restriction training was safe and effective for improved skeletal muscle strength, when performed by a skilled health professional. However, the potential for pain relief needs further research, including its use as a self-management technique because of the potential adverse effects. The need to achieve pain relief, coupled with other factors such as barriers to accessing health facilities, leads PWSCI to attempt anything, including recreational cannabis.⁹² Although there is some effectiveness shown with the use of cannabis in PWSCI,^92,93 cannabis use is still understudied, and inclusion of medicinal cannabis in this framework is performed on the condition that the country of use has legalised it and has been prescribed by a health professional. Experts in this study pointed out that some of the interventions are not widely available in the local context. Although some interventions have proven effective in other countries, it may not always be implementable in another country such as South Africa.⁹⁴ This may be because of the various factors such as differences in the communities, attitudes and beliefs, or financial accessibility. The interventions were therefore included on the premise that they would be available for PWSCI in the local context.

By including the ‘do not know’ option in round one, the authors were able to determine that although healthcare professionals work within a multidisciplinary approach in SCI rehabilitation, there is inadequate information known about interprofessional pain management techniques. This may pose a problem where advocacy is needed for a patient regarding adverse effects picked up by another professional. For example, although physiotherapists in South Africa do not prescribe drugs, knowing the effects of the drug assists in knowing what to expect during therapy or when certain self-techniques are prescribed. A medical practitioner would not know how to adequately advise a patient who is not responding well to non-medical interventions. Therefore, appropriate referrals will need to be made for a holistic treatment for PWSCI with pain to improve HCP practice. The onus rests on the HCPs to increase their knowledge of the various interventions available and expertise in managing pain using other techniques within their scope of practice. Although more difficult to establish, an interdisciplinary approach has been shown to increase the effectiveness of pain management programmes^95,96 and could be a consideration for PWSCI.

This study created a list of interventions that were informed by PWSCI and based on the opinions of health professional experts that may be used to manage pain for PWSCI. Some of the interventions could be applied by PWSCI at home following appropriate training on how to perform them independently. The final framework consists of 56 interventions that may be appropriate for nociceptive and/or neuropathic pain as selected by a panel of health professionals, and span across the different domains of the biopsychosocial model. Most of the experts agreed that interventions are only as effective when administered correctly, and thus proper education on how to perform the interventions adequately and safely is imperative. It must be noticed that all the interventions that were agreed on would not necessarily be appropriate for all PWSCI, and the type, area and severity of the pain would need to be thoroughly assessed. Furthermore, the effectiveness of these interventions needs to be established before the implementation of this framework into clinical practice. This is the first framework of self-management interventions developed for the SCI population to the knowledge of the authors. Pain after SCI has been reported to be difficult to manage and the authors envision this framework to play a vital role in assisting health professionals to know the array of interventions appropriate to guide PWSCI towards pain relief. Having a sense of control over one’s care is positively associated with emotional well-being and an improved ability to deal with stress. An individual’s belief in their capabilities can positively impact mood, subsequently reducing the experience of their pain.