Self-management of pain and depression in adults with spinal cord injury: A scoping review

Figures & data

Figure 1 PRISMA flow diagram.

Figure 2 Articles published each year during the period January 1, 1990 to June 13, 2017.

Table 1 Study characteristics identified in scoping review of articles January 1, 1990 to June 13, 2017.

Author, (year), Country study was conducted	Objective	Method	Study Design	# of Participants
Norrbrink Budh et al., (2006), Sweden^Citation44	To assess whether a comprehensive multidisciplinary pain management program contributes to improved sleep quality, mood, life satisfaction, health-related quality of life, sense of coherence and pain for patients with SCI and neuropathic pain.	Mixed Methods	Before after intervention, program evaluation, interview	38
Molton et al., (2008), United States^Citation45	To test the Motivational Model of Pain Self-Management in adults with SCI-related pain.	Quantitative	Cross-sectional survey	130
Buscemi et al., (2017), United Kingdom^Citation46	To explore how Italians with SCI-related CNP lived with their pain, what they knew about CNP, their experience of healthcare, and how their pain was best managed.	Qualitative	Interview, Focus groups	9
Norrbrink and Lundeberg, (2011), Sweden^Citation47	To explore the possibility of using acupuncture and massage therapy for relieving neuropathic pain following SCI.	Quantitative	Before after intervention	30
Rodgers et al., (2007), United States^Citation48	To adapt a family psychoeducation model, multiple-family group treatment, for persons with brain and SCI and their families.	Mixed Methods	Before after intervention, focus groups, interviews	55
Curtis et al., (2015), Canada^Citation49	To conduct a modified yoga program for individuals with SCI, in terms of both participant experiences and program satisfaction.	Mixed Methods	Pilot study, interview, program evaluation	11
Nawoczenski et al., (2010), Australia^Citation50	To determine the effects of an exercise intervention on pain and functional disability in people with SCI and shoulder impingement symptoms.	Quantitative	Randomized controlled trial	41
Perry et al., (2010), Australia^Citation51	To evaluate the effectiveness of a multidisciplinary cognitive-behavioral pain management program in people with SCI-related chronic pain.	Quantitative	Cross-sectional survey, program evaluation	36
Stuntzner, (2008), United States^Citation52	To determine if a self-study intervention helps people with SCI improve their emotional functioning.	Quantitative	Randomized controlled trial	16
Henwood et al., (2012), Canada^Citation53	To provide insight into the experience and context of SCI individuals who live with CNP and have some degree of acceptance of their pain.	Qualitative	Interview	7
Kratz et al., (2013), United States^Citation54	To examine if activity engagement and pain willingness predict adjustment to pain.	Quantitative	Longitudinal	164
Smith et al., (2015), United Kingdom^Citation55	To investigate users’ perceptions of physiotherapeutic interventions in the syringomyelia population.	Mixed Methods	Cross-sectional survey, interviews	49
Lofgren and Norrbrink, (2012), Sweden^Citation56	To identify strategies and treatments used by individuals with SCI for long-term neuropathic pain, and their experience, needs and expectations of pain management.	Qualitative	Interview	18
Henwood and Ellis, (2004), Canada^Citation57	To explore the experience of CNP in SCI patients relating to physical, emotional, psychosocial, environmental, informational, practical and spiritual domains, and to identify pain coping strategies.	Qualitative	Focus groups	24
Heutink et al., (2011), Netherlands^Citation58	To describe pharmacological and non-pharmacological pain treatments used for CSCIP and examine their effectiveness.	Quantitative	Cross-sectional survey	215
Dorstyn et al., (2012), Australia^Citation59	To determine whether an individualized counseling intervention delivered by telephone improves the emotional adjustment of adults with a newly acquired SCI.	Quantitative	Randomized controlled trial	40
Jensen et al., (2009), United States^Citation60	To examine the effects of hypnosis intervention on pain intensity and depressive symptoms.	Quantitative	Randomized controlled trial	37
Curtis, K et al., (2017), Canada^Citation61	To evaluate the effects of a specialized yoga program for individuals with a SCI on pain, psychological, and mindfulness variables.	Quantitative	Randomized controlled trial	22
Guest et al., (1997), United States^Citation62	To determine if an electrical stimulation walking program results in a change of physical self-concept and depression.	Mixed Methods	Before after intervention, interview	15
Burns et al., (2013), Canada^Citation63	To assess the effectiveness of an interdisciplinary pain program for persons with SCI and chronic pain.	Quantitative	Before after intervention	17
Zsoldos et al., (2014), Hungary^Citation64	To promote the psychological adaptation and social reintegration of patients with SCI by reducing depression and feelings of isolation caused by the long hospitalization.	Qualitative	Interview	15
Hearn et al., (2015), United Kingdom^Citation65	To achieve an understanding of the experience of chronic NP post-SCI and to explore what those living with it consider important in their experience.	Qualitative	Interview	8
Widerstrom-Noga et al., (2017), United States^Citation66	To identify the importance of positive and negative contributors to living with chronic pain after SCI.	Mixed Methods	Cross-sectional survey	526
Heutink et al., (2014), Netherlands^Citation67	To investigate the long-term outcomes of CONECSI, a multidisciplinary cognitive behavioral treatment program in persons with SCI.	Quantitative	Before after intervention	29
Widerstrom-Noga et al., (2016), United States^Citation68	To define neuropathic pain phenotypes in persons with SCI, relationships between thermal pain sensitivity, overall neuropathic pain symptom severity, and pain coping strategies.	Quantitative	Longitudinal	119
Norrbrink and Löfgren, (2016), Sweden^Citation69	To explore patients’ and physicians’ needs and requests for improving the management of neuropathic pain following SCI.	Qualitative	Interview	16
Taylor et al., (2012), United Kingdom^Citation70	To determine the temporal relationship between pain-related coping strategies and psychosocial factors during the subacute phase of SCI.	Quantitative	Longitudinal	26
Norrbrink Budh and Lundeberg, (2004), Sweden^Citation71	To assess which non-pharmacological treatments patients with SCI have tried or are using to relieve pain and evaluate their effectiveness from the patient’s perspective.	Quantitative	Cross-sectional survey	90
Wilson, (2008), United States^Citation72	To identify the association between pain intensity and depressive outcome among persons with SCI.	Quantitative	Cross-sectional survey	60
Dorstyn et al., (2010), Australia^Citation73	To examine the effectiveness of cognitive behavior therapy on the psychological adjustment of patients in rehabilitation for newly acquired SCI.	Quantitative	Non-randomized controlled trial	24
Molton et al., (2009), United States^Citation74	To replicate and expand on previous work demonstrating associations between specific pain-related beliefs, coping, mental health, and pain outcomes in persons with SCI.	Quantitative	Cross-sectional survey	130
Radwanski, (1992), United States^Citation75	To identify reasons for the use of drugs and alcohol by people with chronic pain following SCI and to describe interventions that can be used when treating a patient with SCI who uses drugs and/ or alcohol.	Quantitative	Cross-sectional survey	16
McCasland et al., (2006), United States^Citation76	To examine the prevalence of shoulder pain and functional impairment in patients with TSCI and to identify factors associated with shoulder pain and dysfunction.	Quantitative	Cross-sectional survey	63
Wollaars et al., (2007), Netherlands^Citation77	To examine chronic pain prevalence in individuals with SCI and to determine the influence of psychological factors have on SCI pain and the impact on quality of life.	Quantitative	Cross-sectional survey	279
Phillips et al., (2001), United States^Citation78	To present preliminary results on health-related outcomes of a randomized trial of telehealth interventions in people with SCI.	Mixed Methods	Randomized controlled trial, interview	111
Heutink et al., (2012), Netherlands^Citation79	To evaluate the effectiveness of a cognitive behavioral therapy program.	Quantitative	Randomized controlled trial	61
Norrbrink, (2009), Sweden^Citation80	To assess the short-term effects of high- and low-frequency transcutaneous electrical nerve stimulation for neuropathic pain following SCI.	Quantitative	Cross-over study	24
Cardenas and Jensen, (2006), United States^Citation81	To determine the degree and duration of pain relief provided by specific chronic pain treatments used by individuals with SCI.	Quantitative	Cross-sectional survey	117
Widerstrom–Noga and Turk, (2003), United States^Citation82	To identify the types of pain treatments used after SCI and determine the role that pain characteristics and psychosocial and behavioral factors play in the use of prescription or non-prescription treatments.	Quantitative	Cross-sectional survey	120
Dalyan et al., (1999), United States^Citation83	To determine the frequency and severity of upper extremity pain and to identify types of treatments that SCI patients received for UE pain and the benefits of these treatments.	Quantitative	Cross-sectional survey	130
Martin Ginis et al., (2003), Canada^Citation84	To assess exercise as a strategy for reducing pain and improving subjective well-being in people with SCI.	Quantitative	Randomized controlled trial	30
Heutink et al., (2013), Netherlands^Citation85	To determine associations of pain coping strategies and cognitions with pain intensity and pain-related disability.	Quantitative	Randomized controlled trial	47

Table 2 Intervention characteristics identified in scoping review of articles January 1, 1990 to June 13, 2017.

Author, (year), Country study was conducted	Intervention	Description/ Content	Setting -Delivery Format	Frequency/ Duration	Facilitators	Results
Pain Interventions
Norrbrink Budh et al., (2006), Sweden^Citation44	Pain Management Program	A program consisting of educational sessions, behavior therapy, light exercise, relaxation techniques, stretching and body awareness training.	Not reported -In person, group	2/week for 10 weeks	Healthcare professional	Improved mood and quality of sleep, decreased demand for care, no reduction in pain intensities.
Norrbrink and Lundeberg, (2011), Sweden^Citation47	Medical acupuncture and massage therapy	Acupuncture (a) points were chosen individually and needles were inserted in areas with preserved sensation. Classical massage therapy (b) was carried out in areas with pain and preserved sensation.	Not reported -In person, individual	2/week for 6 weeks	Not reported	a) Improved energy, bladder/bowel, sleep, function, decreased allodynia, spasticity, medication; b) Less stiffness, spasticity, allodynia, painful attacks, medication, improved function, sleep, relaxation, circulation
Curtis et al., (2015), Canada^Citation49	Yoga	A yoga program focusing on breath awareness, nonjudgmental attention to present experience, mindful movement, and a supportive environment.	Rehabilitation Center -In person, group	1/week for 8 weeks	Yoga Instructor	Positive experiences along emotional, mental, and physical dimensions.
Nawoczenski et al., (2006), United States^Citation50	Exercise Program	A home exercise program consisting of stretching and strengthening exercises with elastic band resistance.	Home -In person, individual	1/day for 8 weeks	Self	Reduced pain and improved function and satisfaction.
Perry et al., (2010), Australia^Citation51	Pain Management Program	PMP consisted of education about pain mechanisms and training in self-management skills.	Pain Management Center -In person	10 sessions for total of 45 hours	Clinical psychologist, PT, nurses, doctors	Improved SF-12 MCS and Multidimensional Pain Inventory (MPI) Life Interference scores.
Jensen et al., (2009), United States^Citation60	Self-Hypnosis	The intervention consisted of hypnotic analgesia and self-hypnosis training.	Home -In person and technology (asynchronous)	Daily to weekly for 10 sessions	Clinician	Decreased average daily pain
Curtis et al., (2017), Canada^Citation61	Yoga	Yoga classes included breathing practices, physical postures, yoga philosophy, mindfulness, and meditation/relaxation techniques.	Rehabilitation Hospital -In person, group	2/week for 6 weeks	Certified Iyengar yoga teachers	Increased self-compassion, decreased symptoms of depression, no improvements in pain intensity, interference, or catastrophizing.
Burns et al., (2013), Canada^Citation63	Interdisciplinary Pain Program	The sessions included CBT, patient education, self-management strategies, group discussions and activities, and either group exercise or guided relaxation.	Rehabilitation Hospital -In person, group	Biweekly for 10 weeks	PT, OT, social worker	Increased incorporation and maintenance of coping strategies, less pain interference and a greater sense of control.
Heutink et al., (2014), Netherlands^Citation67	Multidisciplinary Program	The program comprises educational, cognitive, and behavioral elements targeted at coping with CNSCIP.	Rehabilitation Center -In person, group	1/week for 10 weeks	PT, nurse, psychologist	Favorable long-term outcomes on pain intensity, pain-related disability, anxiety and activity participation.
Heutink et al., (2012), Netherlands^Citation79	Cognitive Behavioral Therapy	The intervention consisted of educational, cognitive, and behavioral elements designed for people with CNSCIP.	Rehabilitation Center -In person, group	1/week for 10 weeks	psychologist, PT, nurse practitioner, peer	Decreased pain intensity and anxiety, increased participation in activities.
Heutink et al., (2013), Netherlands^Citation85	Cognitive Behavioral Therapy	The CBT program comprises educational, cognitive, and behavioral elements to cope with SCI.	Rehabilitation Center -In person, group	1/week for 10 weeks	Psychiatrist, trainer	Improved pain coping strategies and pain cognitions.
Depression Interventions
Rodgers et al., (2007), United States^Citation48	Multiple Family Group Treatment	A psychoeducational management intervention designed to assist families and patients with their coping and illness management skills.	Rehabilitation center -In person, group	2/month for 12–18 months	Clinicians, social worker, OT, PT, speech pathologists, RN	Improved happiness with life, satisfaction, psychosocial well-being, decreased depressive symptoms and anger.
Stuntzner, S. M., (2008), United States^Citation52	Coping Effectively with SCI	A program consisting of reading specific chapters and answering questions to reflect on experiences and feelings.	Home -Technology (asynchronous)	∼1/week for 8 weeks	Researcher	Decreased depression
Dorstyn et al., (2012), Australia^Citation59	Telecounseling Program	Group-based or individual counseling delivered via telephone, telecounseling.	Home -Technology (synchronous)	Biweekly for 12 weeks	Psychologist	Improved mood and the use of SCI-specific coping skills.
Guest et al., (1997), United States^Citation62	Electrical Stimulation Walking Program	The system consists of a microprocessor-controlled stimulator and a modified walking frame with user controlled, finger-operated switches that activate stepping.	Research Laboratory -In person	32 sessions	Not reported	Statistically significant changes in scores on the Physical Self subscale of the TSCS and the Beck Depression Inventory.
Zsoldos et al., (2014), Hungary^Citation64	Animal Assisted Intervention	An intervention that intentionally involves animals in the therapeutic process.	Hospital -In person, group	2/week for 5 weeks	First author, psychologist, therapeutic dog guides, conservator	Positive changes affecting emotional state, improved socialization and group cohesion.
Dorstyn et al., (2010), Australia^Citation73	Cognitive Behavioral Therapy	CBT incorporated confidence building, education surrounding the emotional impact of SCI, stress and symptom relief and coping skills.	Rehabilitation Center -In person	Biweekly for average of 11 sessions	Psychologist	Improved depression scores which then significantly declined post-intervention.
Phillips et al., (2001), United States^Citation78	Telehealth – Telephone Counseling	Educational initiatives to promote rehabilitation following discharge after initial spinal cord injury.	Home -Technology, synchronous	1/week for 5 weeks, 1/2 weeks for 4 weeks	Nurse	Depressive symptoms declined for all three groups.
Pain and Depression Interventions
Norrbrink, (2009), Sweden^Citation80	Transcutaneous Electrical Nerve Stimulation (TENS)	Patients self delivered the treatment involving a stimulator and four self-adhesive electrodes.	Home -In person, individual	3/day for 3 weeks	Self	Low frequency and high frequency TENS had no statistically significant effect on any parameters.
Martin Ginis et al., (2003), Canada^Citation84	Exercise Program	Exercise training sessions included stretching, aerobic arm ergometry and resistance exercise.	Rehabilitation Center -In person, group	24 sessions (ideal: 2/week for 12 weeks)	PT and kinesiology students	Reduced stress, pain, and depression, better physical self-concept and quality of life.

PT, physical therapist; OT, occupational therapist; RN, registered nurse; CBT, cognitive behavioral therapy; NP, neuropathic pain; CNSCIP, chronic neuropathic spinal cord injury pain.

Table 3 Components of self-management identified in scoping review of articles January 1, 1990 to June 13, 2017^+*
 ✓ – identified in article; X – not identified.

	Core Tasks			Core Skills
Study	Medical Management	Emotional Management	Role Management	Problem Solving	Decision Making	Resource Utilization	Forming Partnerships	Taking Action	Self-Tailoring
Norrbrink Budh et al., (2006), Sweden^Citation44	✓	✓	✓	✓	✓	✓	✓	✓	✓
Heutink et al., (2014), Netherlands^Citation67	✓	✓	✓	✓	✓	✓	✓	✓	✓
Heutink et al., (2013), Netherlands^Citation85	✓	✓	✓	✓	✓	✓	✓	✓	✓
Dorstyn et al., (2010), Australia^Citation73	✓	✓	✓	✓	✓	✓	✓	✓	✓
Rodgers et al., (2007), United States^Citation48	✓	✓	✓	✓	✓	X	✓	✓	X
Perry et al., (2010), Australia^Citation51	✓	✓	X	✓	✓	✓	X	✓	✓
Burns et al., (2013), Canada^Citation63	✓	✓	✓	X	✓	✓	X	✓	✓
Heutink et al., (2012), Netherlands^Citation79	✓	✓	X	X	✓	✓	✓	✓	X
Henwood and Ellis, (2004), Canada^Citation57	✓	✓	✓	✓	✓	X	X	✓	X
Kratz et al., (2013), United States^Citation54	✓	✓	✓	✓	X	X	X	✓	X
Stuntzner, S. M., (2008), United States^Citation52	✓	✓	X	X	X	✓	X	✓	✓
Lofgren and Norrbrink (2012), Sweden^Citation56	✓	X	X	✓	✓	X	X	✓	✓
Dorstyn et al., (2012), Australia^Citation59	✓	✓	✓	X	✓	X	X	✓	X
Cardenas and Jensen, (2006), United States^Citation81	✓	X	X	✓	✓	X	X	✓	✓
Widerstrom–Noga and Turk, (2003), United States^Citation82	✓	X	X	✓	✓	X	X	✓	✓
Phillips et al., (2001), United States^Citation78	✓	✓	✓	X	X	X	✓	✓	X
Martin Ginis et al., (2003), Canada^Citation84	✓	✓	X	X	X	✓	✓	✓	X
Zsoldos et al., (2014), Hungary^Citation64	✓	✓	X	X	✓	✓	X	✓	X
Molton et al., (2008), United States^Citation45	✓	X	X	X	X	✓	X	✓	✓
Curtis et al., (2015), Canada^Citation49	✓	✓	X	X	X	✓	X	✓	X
Guest et al., (1997), United States^Citation62	✓	✓	X	X	X	X	X	✓	✓
Norrbrink and Löfgren, (2016), Sweden^Citation69	✓	X	X	✓	X	X	X	✓	✓
Wilson, (2008), United States^Citation72	✓	✓	X	X	X	X	X	✓	✓
Wollaars et al., (2007), Netherlands^Citation77	✓	✓	X	X	X	X	X	✓	✓
Norrbrink, (2009), Sweden^Citation80	✓	✓	X	X	X	X	X	✓	✓
Dalyan et al., (1999), United States^Citation83	✓	X	✓	X	X	X	X	✓	✓
McCasland et al., (2006), United States^Citation76	✓	X	X	X	X	X	X	✓	✓
Buscemi et al., (2017), United Kingdom^Citation46	✓	X	X	X	X	X	X	✓	✓
Norrbrink and Lundeberg, (2011), Sweden^Citation47	✓	✓	X	X	X	X	X	✓	X
Jensen et al., (2009), United States^Citation60	✓	✓	X	X	X	X	X	✓	X
Curtis et al., (2017), Canada^Citation61	✓	✓	X	X	X	X	X	✓	X
Molton et al., (2009), United States^Citation74	✓	X	X	X	X	X	X	X	✓
Radwanski, (1992), United States^Citation75	✓	X	X	X	X	X	X	X	✓
Taylor et al., (2012), United Kingdom^Citation70	✓	X	X	X	X	X	X	X	✓
Norrbrink Budh and Lundeberg, (2004), Sweden^Citation71	✓	X	X	X	X	X	X	X	✓
Hearn et al., (2015), United Kingdom^Citation65	✓	X	X	X	X	X	X	X	✓
Widerstrom-Noga et al., (2017), United States^Citation66	✓	X	X	X	X	X	X	X	✓
Henwood et al., (2012), Canada^Citation53	✓	X	X	X	X	X	X	X	✓
Nawoczenski et al., (2006), United States^Citation50	✓	X	X	X	X	X	X	✓	X
Widerstrom-Noga et al., (2016), United States^Citation68	✓	X	X	X	X	X	X	✓	X
Heutink et al., (2011), Netherlands^Citation58	✓	X	X	X	X	X	X	✓	X
Smith et al., (2015), United Kingdom^Citation55	✓	X	X	X	X	X	X	✓	X

⁺See Supplemental material B for definitions and examples of the core self-management tasks and skills outlined by Lorig and Holman.¹⁶

*Studies are organized by the integration of self-management tasks and skills from highest to lowest.

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 Kingdom^Citation46	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 CNP^a	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), Canada^Citation53	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), Sweden^Citation56	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), Canada^Citation57	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), Hungary^Citation64	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 Kingdom^Citation65	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), Sweden^Citation69	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.

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