A Scoping Review of Self-Management Interventions Following Spinal Cord Injury

Amanda McIntyre; Stephanie L Marrocco; Samantha A McRae; Lindsay Sleeth; Sander Hitzig; Susan Jaglal; Gary Linassi; Sarah Munce; Dalton L Wolfe

doi:10.1310/sci2601-36

. 2020 Winter;26(1):36–63. doi: 10.1310/sci2601-36

A Scoping Review of Self-Management Interventions Following Spinal Cord Injury

Amanda McIntyre ^1,^✉, Stephanie L Marrocco ¹, Samantha A McRae ³, Lindsay Sleeth ¹, Sander Hitzig ^4,^5,⁶, Susan Jaglal ^7,^8,⁹, Gary Linassi ¹⁰, Sarah Munce ^8,^9,¹¹, Dalton L Wolfe ^1,²

PMCID: PMC7015175 PMID: 32095066

Abstract

Objective: To conduct a scoping review to identify what components of self-management are embedded in self-management interventions for spinal cord injury (SCI). Methods: In accordance with the approach and stages outlined by Arksey and O'Malley (2005), a comprehensive literature search was conducted using five databases. Study characteristics were extracted from included articles, and intervention descriptions were coded using Practical Reviews in Self-Management Support (PRISMS) (Pearce et al, 2016), Barlow et al (2002), and Lorig and Holman's (2003) taxonomy. Results: A total of 112 studies were included representing 102 unique self-management programs. The majority of the programs took an individual approach (52.0%) as opposed to a group (27.4%) or mixed approach (17.6%). While most of the programs covered general information, some provided specific symptom management. Peers were the most common tutor delivering the program material. The most common Barlow components included symptom management (n = 44; 43.1%), information about condition/treatment (n = 34; 33.3%), and coping (n = 33; 32.4%). The most common PRISMS components were information about condition and management (n = 85; 83.3%), training/rehearsal for psychological strategies (n = 52; 51.0%), and lifestyle advice and support (n = 52; 51.0%). The most common Lorig components were taking action (n = 62; 60.8%), resource utilization (n = 57; 55.9%), and self-tailoring (n = 55; 53.9%). Conclusion: Applying self-management concepts to complex conditions such as SCI is only in the earliest stages of development. Despite having studied the topic from a broad perspective, this review reflects an ongoing program of research that links to an initiative to continue refining and testing self-management interventions in SCI.

Keywords: education program, scoping review, self-management, spinal cord injury

Spinal cord injury (SCI) is a life-altering event that leads to impairments in motor and sensory function and disrupts the autonomic, bowel, bladder, and autonomic systems. Common SCI-related secondary health conditions include pressure ulcers, spasticity, neuropathic and/or musculoskeletal pain, urinary tract infections, sexual problems, constipation, kidney stones, fatigue, autonomic dysreflexia, and depression.¹^,² Reports in the literature have found that, on average, persons with SCI may experience seven secondary health conditions at any given time.³^,⁴ In the last several decades, there has been a dramatic increase in the lifespan of individuals with SCI. This has complicated the occurrence and interaction of typical age-related processes (eg, sarcopenia) and repeated instances of ongoing secondary health conditions (eg, pressure ulcers), which contribute to poorer health and potentially accelerate the aging process.⁵ These health challenges also restrict participation in community/social activities.⁶ In addition to the personal impact on quality of life (QoL) of the person with SCI,⁷ the costs to the health care systems are significant.^8–11 A recent Canadian economic analysis estimated that the annual economic burden in individuals who survived their initial hospitalization (n = 1,389) was 2.67 billion.¹²

SCI is increasingly being viewed as a chronic disease, similar to diabetes, placing greater emphasis on the role of self-management (SM) as a means for improving long-term outcomes.¹³ Recent efforts in the field show that SM approaches are increasing in popularity for addressing a range of issues post SCI, including the management of secondary health conditions (eg, pain management,¹⁴ pressure ulcer prevention¹⁵), health promotion (eg, physical activity,¹⁶ weight loss¹⁷), emotional well-being and coping,¹⁸ and community living.¹⁹^,²⁰ Similar to SM in other chronic disease groups, there is no gold standard on what constitutes SM in SCI.²¹^,²² Several definitions and taxonomies have been proposed. For example, Barlow and colleagues²¹ described SM as:

“[...] the individual's ability to manage the symptoms, treatment, physical, and psychosocial consequences and life style changes inherent in living with a chronic condition. Efficacious SM encompasses ability to monitor one's condition and to effect the cognitive, behavioural and emotional consequences necessary to maintain satisfactory quality of life.” (p. 178)

There have been a number of reported benefits of SM approaches in the SCI population,²³ but the noted complexities of SCI including the interplay of primary impairments and secondary health conditions suggest that a more tailored approach to SM is needed.²⁴ This is consistent with other management approaches of chronic disability groups such as stroke²⁵ and arthritis.²⁶

To help advance knowledge on understanding what is needed for a SM approach in SCI, Munce and colleagues undertook several activities to understand what SM means to individuals with SCI and other relevant stakeholders,²³ the impact it holds on psychological well-being,²⁷ what components should be included in SM approaches,²⁴ and barriers and facilitators to SM.²⁸ To complement this work toward developing a robust model of SM for SCI,²³^,²⁴^,²⁷^,²⁸ the goal of the present scoping review was to identify what components of SM are embedded in SM interventions for SCI.

Methods

A scoping review of the literature was performed using the approach and stages outlined by Arksey and O'Malley²⁹ and recommendations made by Levac and colleagues.³⁰ This scoping review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. Scoping reviews adopt broad, comprehensive objectives and allow researchers to examine the extent, range, and nature of research activity; determine the value of performing a systematic review; summarize and disseminate key research findings; or identify gaps in the literature.²⁹ This type of methodology is especially useful when studying a complex concept³¹ or a discipline with emerging evidence,³⁰ both of which are applicable to the nature of SM research targeting SCI. While a review protocol was utilized, it was not registered.

Stage 1: Identifying the research question

Given that SM has several existing definitions, the research question was worded to allow for an examination of SM from multiple dimensions. The research question was “What components are embedded in SM interventions for SCI?” Components were largely defined by the Practical Reviews in Self-Management Support (PRISMS) taxonomy²² and approaches to SM put forth by Barlow and colleagues.²¹ The PRISMS taxonomy classifies components of SM support, which can be used as a framework for the design and description of interventions, synthesis of evidence, and development of health care with long-term conditions.²² The taxonomy has 14 components that fall into four overarching dimensions: (1) mode of delivery (eg, face-to-face; remote; web-based); (2) personnel delivering/facilitating support (eg, health care professional; lay educators); (3) targeting of the intervention (eg, individual vs groups, generic or condition-specific, cultural groups); and (4) intensity, frequency, and duration of the intervention.²² Similarly, in their review of SM approaches for persons with chronic conditions, Barlow and colleagues²¹ classified the identified studies using the following headings: (a) target population (child, youth, adults, cultural group); (b) delivery location (home, hospital, etc); (c) SM tutors (eg, health care professional, lay educators); (c) mode (eg, individual, group); (d) format (booklets, videos, group discussion); and (e) content (eg, information, drug management, symptom management). Finally, there are six core SM components to the Lorig et al³² taxonomy: (1) problem solving, (2) decision making, (3) resource utilization, (4) forming patient/health care partnership, (5) taking action, and (6) self-tailoring. For the present scoping review, the PRISMS,²² Barlow et al,²¹ and Lorig et al³² taxonomies or classification systems were utilized to help organize the findings.

Stage 2: Identifying relevant studies

A literature search strategy was developed for five databases (CINAHL, PubMed, EMBASE, MEDLINE, and PsycINFO) in consultation with a reference librarian. The search strategy contained two constructs: SM and SCI. SM key words were broad to capture the many characterizations of this term. Final search terms and combinations can be found in the Appendix A. The literature search was filtered to include only articles published in the English language and those published after the year 1990.

Stage 3: Study selection

After removing duplicates, two reviewers independently assessed the relevance of each article using the following inclusion/exclusion criteria through title and abstract screening and subsequent full-text review: (a) detailed an intervention in a primarily SCI population (>50%) and b) described a program plan relevant to SM. Studies were excluded if they were (a) not an intervention applied to a study population, (b) not applicable to SCI or an intervention not for SCI populations, (c) conference abstracts with related texts already included, (d) interventions with fewer than three participants, and (e) interventions not relevant to SM. Any conflicts that arose during study screening were resolved in discussion with a third reviewer.

Stage 4: Charting the data

The initial data extraction form was developed among the research team and independently piloted by four team members on three articles. This exercise prompted discussions about the clarity and comprehensiveness of the extraction form and allowed for appropriate revisions before a more refined form was established. The two initial reviewers then used this form to extract information from included studies. The extraction form was updated iteratively based on discussion among the reviewers, with reviewers exchanging their assigned articles after each update to allow for verification of the information extracted throughout this process. Confusion or questions were resolved in consultation with another reviewer. The final data extraction form (Appendix B) charted included the following categories: study and sample characteristics (eg, author, year, study type, sample size), program characteristics (eg, name, delivery location, format), SM components defined by Barlow, Lorig, and PRISMS taxonomy components, whether a definition of SM was provided by authors, and SM categories that were evident in the intervention (as perceived by the reviewer).

Stage 5: Collating, summarizing,and reporting the results

A critical appraisal of the included sources of evidence, in terms of methodological quality, was not conducted. Descriptive statistics were used to analyze the frequency of the various categories on the extraction form. Results were examined to determine trends in SM intervention components and characteristics, as well as gaps in SM research among SCI populations. Potential opportunities for undertaking systematic reviews were also identified.

Results

Study selection

A flow chart depicting the study selection process is available in Figure 1. The initial search was run on February 11, 2015, which retrieved a total of 7,814 articles. After applying the search parameters, 3,871 were identified to undergo selection screening. A second search was undertaken to capture articles published from February 1, 2015 until April 13, 2018, yielding a total of 4,750 articles that was reduced to 760 after applying search parameters. A hand-searching strategy was also employed, comprised of searching the reference lists of included articles and searching five relevant journals, which identified an additional 30 unique articles. The two search results were screened to select 252 articles for full-text review. Despite significant attempts by the research librarian to obtain 14 full texts, they could not be located and were excluded from full review (Appendix C). Ultimately, 99 articles remained for inclusion. Hand searching of the references of identified records yielded 21 articles for full-text review, which resulted in an additional 13 articles to be included in analysis for a total of 112 articles (Appendix D).

Study and sample characteristics

Ninety-four of the 112 studies were published after the year 2000, with the majority (n = 74) being published between January 2006 and April 2018. The literature included for the review was largely from academic journals (n = 101), with 10 articles published as conference abstracts and one as a workbook. Of the 112 sources included for extraction, there were 102 unique programs. Fifty-eight of the programs originated in the United States, 16 programs in Canada, 11 in Australia, 4 in the United Kingdom, and 7 in the Netherlands. One program took place in each of the following countries: Thailand, South Korea, Spain, Sweden, and Switzerland. There was one program that did not specify the location. The mean sample size (SD) was 43.8 (37.6) subjects with a median (range) of 31.5 (3–194).

Program characteristics

Three of the 102 programs provided an explicit definition of SM with an appropriate citation. SM programs were described as being carried out in an individual or group mode. A little more than half the programs (n = 53; 52.0%) took an individual approach to SM. Twenty-eight (27.4%) programs took a group approach to SM, and 18 (17.6%) used a mixed-method program. Three programs (2.9%) were not clear on which mode was used. While most of the programs covered general information (level and severity of injury, hygiene, mobility), some provided specific symptom management (pressure ulcers, incontinence, pain). Several management topics were included as either a primary focus of programs or as just one component of a program. In order of decreasing prevalence, topics included pressure ulcers/skin management (n = 18), bladder/urinary tract infection/bowel management (n = 10), secondary condition management (n = 9), pain management (n = 9), sexual dysfunction management (n = 2), and methicillin-resistant Staphylococcus aureus management (n = 1).

The term “tutor” was by the scoping review's authors to denote the individual that helped to facilitate, run, or mentor the participant through the SM program. A variety of people acted as a tutor in the SM programs including doctors, nurses, researchers, peers, occupational therapists, physical therapists, social workers, psychologists, and therapists (recreational therapist) (Table 1). General/unspecified health professionals (ie, only used the term “health care provider”) was the most common type of tutor used in SM programs (n = 29), followed by peers (n = 28) and nurses (n= 21).

Table 1.

Self-management tutors

Tutor		Tally	Total
Nurse	Only	11¹⁵^,^42–51	21
Nurse	Mixed	10^52–61	21
Nurse practitioner	Only	0	2
Nurse practitioner	Mixed	2⁶²^,⁶³	2
Doctor	Only	1⁶⁴	6
Doctor	Mixed	5⁵²^,⁵⁵^,⁵⁷^,⁶⁰^,⁶⁵	6
Researcher	Only	7^66–72	12
Researcher	Mixed	5⁵⁵^,^73–76	12
Peer	Only	12¹⁹^,^77–87	28
Peer	Mixed	16⁵⁶^,⁵⁹^,⁶¹^,⁶⁵^,⁷³^,⁷⁴^,^88–97	28
Occupational therapy	Only	2⁹⁸^,⁹⁹	11
Occupational therapy	Mixed	9⁵²^,⁵³^,⁵⁵^,^100–105	11
Physical therapy	Only	0	10
Physical therapy	Mixed	10¹⁴^,⁵²^,⁵³^,⁵⁵^,⁶⁰^,⁶²^,⁶³^,^104–106	10
Social worker	Only	0	5
Social worker	Mixed	5¹⁴^,⁵⁴^,⁵⁹^,¹⁰³^,¹⁰⁵	5
Other	Only	11¹⁶^,^107–116	21
Other	Mixed	12⁵⁵^,⁵⁹^,⁶⁵^,⁷³^,⁷⁵^,⁸⁹^,^95–97^,¹⁰⁰^,¹⁰⁶^,¹¹⁷	21
Field of psychology (ie, therapist, psychologist, physiatrist)	Only	6¹⁸^,^118–122	15
	Mixed	9⁵²^,⁵⁵^,⁶⁰^,⁶²^,⁶³^,⁷⁶^,⁹⁶^,¹⁰²^,¹¹⁷	15
General/unspecified health professional	Only	21^123–143	29
General/unspecified health professional	Mixed	8⁷³^,^88–94	29
Self	Only	2¹⁴⁴^,¹⁴⁵	3
Self	Mixed	1⁵⁸	3
N/A		4^146–149	4

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The SM programs used different tools, formats, and resources to implement their program. A variety of SM program formats were found, including individual sessions with health care providers, audio tapes, telephone, online resources, booklets, lecture/seminar, exercise/recreation, group sessions, peer mentoring, cognitive behavioral therapy, videos, and counseling (Table 2). The most common format used was group sessions (n = 35), followed closely by the use of booklets/handouts (n= 34), individual sessions with a health professional (n = 29), and lecture/seminars (n = 24). Regarding delivery location, the majority of SM programs (n = 52; 51.0%) were delivered in a hospital setting, followed by the community (n = 41; 40.1%) and by a few that used both the hospital and community setting (n= 9; 8.8%).

Table 2.

Self-management program formats

Format		Tally	Total
Audio tapes	Only	0	3
Audio tapes	Mixed	3⁸¹^,¹⁴⁶^,¹⁴⁷	3
Phone	Only	4⁶¹^,⁸⁶^,⁹⁰^,⁹⁵	17
Phone	Mixed	13¹⁹^,⁴³^,⁴⁵^,⁵⁰^,⁷⁶^,⁸⁴^,¹⁰⁹^,¹¹⁸^,¹²⁸^,¹⁴⁰^,¹⁴²^,¹⁴⁶^,¹⁴⁷	17
Online	Only	10¹⁶^,⁵⁵^,⁵⁸^,⁶⁵^,⁶⁹^,^72–74^,⁹⁴^,¹³⁷	17
Online	Mixed	7^48–50^,⁷⁶^,⁸⁹^,¹¹⁵^,¹³⁵	17
Booklet or other hard copy resource	Only	6⁴²^,⁵¹^,⁷⁰^,¹³⁶^,¹³⁹^,¹⁴⁴	34
Booklet or other hard copy resource	Mixed	28²⁰^,⁴⁴^,⁴⁵^,⁴⁹^,⁵⁰^,⁵²^,⁵³^,⁵⁷^,⁵⁹^,⁶³^,⁶⁶^,⁶⁸^,¹⁰⁰^,¹⁰²^,¹¹⁰^,¹¹³^,¹¹⁵^,¹¹⁶^,¹²¹^,¹²²^,¹²⁶^,¹²⁸^,¹³⁰^,¹³³^,¹³⁸^,^140–142	34
Lecture/seminar	Only	3⁶²^,¹⁰⁵^,¹¹²	24
Lecture/seminar	Mixed	21¹⁴^,⁵⁴^,⁵⁹^,⁶⁴^,⁶⁷^,⁷⁷^,⁹¹^,⁹³^,⁹⁷^,¹⁰⁶^,¹¹³^,¹²⁰^,¹²⁴^,¹²⁵^,¹²⁸^,¹³⁰^,¹³²^,¹³⁴^,¹³⁸^,¹⁴¹^,¹⁴³	24
Individual session with health care professional	Only	8¹⁵^,⁴⁶^,⁷¹^,⁸⁶^,⁹⁹^,¹⁰⁸^,¹²⁷^,¹²⁹	29
Individual session with health care professional	Mixed	21¹⁹^,⁴⁴^,⁴⁵^,⁵⁶^,⁵⁷^,⁶⁴^,⁶⁶^,⁶⁸^,⁷⁹^,⁸³^,⁸⁸^,¹⁰⁴^,¹¹⁴^,¹¹⁶^,¹¹⁸^,¹²⁴^,¹³⁴^,¹³⁵^,^141–143	29
Exercise/Recreation session	Only	0	12
Exercise/Recreation session	Mixed	12¹⁴^,¹⁷^,⁵²^,⁶⁰^,⁶³^,⁹¹^,¹⁰⁴^,¹⁰⁶^,¹¹⁴^,¹²³^,¹²⁴^,¹³⁴	12
Group session	Only	2¹⁰⁷^,¹¹⁹	35
Group session	Mixed	33¹⁴^,¹⁷^,²⁰^,⁴⁸^,⁴⁹^,⁵³^,⁵⁴^,⁵⁶^,⁵⁹^,⁶⁰^,⁶³^,⁶⁷^,⁸¹^,⁸²^,⁸⁴^,⁸⁸^,⁹¹^,⁹³^,⁹⁸^,¹⁰⁰^,¹⁰²^,¹¹¹^,¹¹⁶^,¹²⁰^,¹²²^,¹²⁴^,¹²⁵^,¹²⁸^,¹³⁰^,^132–134^,¹⁴¹	35
Peer mentoring/Support	Only	5⁷⁵^,⁸⁰^,⁸⁵^,⁹⁶^,¹¹⁰	19
Peer mentoring/Support	Mixed	14²⁰^,⁵⁰^,⁵⁶^,^81–84^,⁹¹^,⁹⁸^,¹¹¹^,¹¹⁶^,¹³²^,¹³⁴^,¹⁴⁹	19
CBT	Only	0	3
CBT	Mixed	3¹⁴^,⁶⁰^,¹³⁰	3
Videos	Only	2⁷⁸^,¹⁴⁵	12
Videos	Mixed	10⁴³^,⁶⁴^,⁶⁷^,⁸⁹^,¹¹⁵^,¹²⁶^,¹³⁵^,¹⁴⁰^,¹⁴²^,¹⁴⁹	12
Counselling	Only	3¹⁸^,⁴⁷^,¹¹⁰	14
Counselling	Mixed	11⁴⁸^,⁴⁹^,⁵²^,⁵³^,⁸⁴^,⁹⁷^,¹⁰²^,¹²¹^,¹³⁸^,¹⁴⁶^,¹⁴⁷	14
Unclear		4⁸⁷^,⁹²^,¹³¹^,¹⁴⁸	4

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Note: CBT = cognitive behavioral therapy.

Barlow review

Figure 2 provides a summary of Barlow's²¹ program components included by each SM program. The top three most common components used were symptom management (n = 44; 43.1%), information about condition/treatment (n = 34; 33.3%), and coping (n = 33; 32.4%). Six components were not used in any of the SM programs: spirituality, contraction (goal setting), smoking, holidays, friend support, and injury acceptance.

PRISMS taxonomy

Figure 3 provides a summary of the PRISMS taxonomy²² program components achieved by each SM program. The three most common components were information about condition and management (n = 85; 83.3%), training/rehearsal for psychological strategies (n = 52; 51.0%), and lifestyle advice and support (n = 52; 51.0%). The three least common components in SM programs were training/rehearsal for everyday activities (n = 6; 5.9%), training/rehearsal to communicate with health care providers (n = 5; 4.9%), and regular clinical review (n = 2; 1.9%).

Lorig taxonomy

The three most common Lorig taxonomy³² components in the SM programs were taking action (n = 62; 60.8%), resource utilization (n = 57; 55.9%), and self-tailoring (n = 55; 53.9%). The three least common components were problem solving (n = 45; 44.1%), forming patient/health care provider partnerships (n = 20; 19.6%), and decision making (n = 17; 16.7%).

Discussion

This scoping review of the literature identified which components of SM, as identified within established taxonomies, are embedded in SM interventions for persons with SCI. From the identified literature, only 3 of 102 programs included a definition for SM. Most programs provided general SCI information; few provided information on specific topics common in SCI. Health care professionals most commonly delivered program material via group sessions or use of booklets/lectures/seminars in the community or home setting. The most common SM components as defined in the Barlow review and the PRISMS taxonomy dealt with condition and symptom management, followed by psychological training (eg, problem-solving strategies, relaxation techniques, reframing, distraction, goal setting) and coping strategies.

Historically, the purpose of SM programs has been to promote a person's ability to manage symptoms, treatment, consequences, and lifestyle changes associated with his/her chronic condition.²¹ SM programs have largely focused on education as the foundation for instilling change. This narrowed emphasis on education was reflected in our scoping review. The SM component most often utilized was the delivery of general or topic-specific SCI information. Two studies evaluated the importance,²⁴ as well as perceived facilitators and barriers,²⁸ of SM topics from a patient/caregiver perspective. Munce et al²⁴ reported that among 99 participants with SCI, the most important topics were exercise, nutrition, pain management, aging, communication with health care professionals, problem solving, community reintegration, and confidence. Among these topics, our scoping review found that only pain was a specific focus of a SM program in nine studies. The other topics advised by participants in the Munce et al²⁴ study may have been covered in secondary condition management programs (n= 9 studies) or general SCI programs. Although knowledge is integral to any SM program, they are most efficacious when strategies are endorsed that improve cognitive, behavioral, and emotional responses as well.²¹

The current scoping review identified the number and type of unique SM taxonomy components included and excluded in the programs. All components from the Lorig and PRISMS taxonomies were included in at least one program included for review. However, there were six components not used from Barlow's taxonomy: spirituality, contraction, holidays, smoking, friend support, and injury acceptance. These components are important within the SCI population. For example, smoking and nicotine ingestion increases neuropathic pain in individuals with SCI.³³ Therefore, SM programs that include strategies for smoking cessation would be highly valuable. Similarly, extensive research has demonstrated that friend support and social networks are important for management of secondary health conditions post SCI. Fortunately, this scoping review found that peer tutors and peer support discussions were often used in the SM programs. Social ties appear to be strong, involve a high level of trust, and serve to fill knowledge gaps in the health care system within the SCI population.³⁴

A comprehensive SM program should reflect the inclusion of a greater number of components. There is a clear discrepancy in SM components between programs currently developed and those considered to be optimal or necessary by the most important stakeholders (ie, clinicians, researchers, policy makers).³⁵ In a large scoping review on SM for chronic disease, Richardson et al³⁶ suggested that many rehabilitation tenants are similar to traditional SM models. Approaching SM like self-care is limited in that it does not account for the benefits of including behavior change strategies. One such strategy may be acceptance. Assisting individuals to accept and adjust to a different level of functioning after an SCI is important for the management of secondary conditions. This scoping review did not find that acceptance models were incorporated in any of the SM programs, which is surprising given that it is within the scope of implementation for all rehabilitation clinicians. In a qualitative study examining acceptance of neuropathic pain post SCI, Henwood et al³⁷ found that it was beneficial in reducing suffering and facilitating a higher quality of life. Individuals who did not continue to seek out or emphasize the need for cure for their neuropathic pain had better pain coping. These findings provide evidence for the need for vital SM components, such as behavior change, which should be prioritized for inclusion in future programs.

SM program developers should more explicitly think about the intersection of their components with theory such that they are intentionally embedded. This will allow continued testing and determination of those components that are most effective. Prior to implementing a program, health care professionals should consider that patients' understanding and interpretation of SM is variable. A one-size-fits-all approach is likely inappropriate, and patient-specific barriers and facilitators must be accommodated.²⁸ A key component of the initial process would be an assessment of readiness and behavior set evaluation. For example, one could use the Health Action Process Approach model³⁸ to determine whether a person intends to act on a health behavior and whether they have the motivation, acceptance, and/or perceived control to be able to optimally engage in a SM program. Health care professionals working with individuals who are preintentional should focus on activities that encourage them to better understand the risks or outcome of a behavior, whereas an individual in the action stage of change should be encouraged to develop strategies for goal setting, action planning, and so on.³⁸

In developing and integrating SM programs for individuals with SCI, several considerations should be made. Caregivers and individuals with SCI suggest that SM program facilitators include physical support from the caregiver, emotional support from the caregiver, peer support and feedback, importance of positive outlook and acceptance, and maintaining independence/control over care.²⁸ Barriers included caregiver burnout, funding and funding policies, lack of accessibility, physical limitations and secondary complications, and difficulties achieving positive outlook or mood.²⁸ At present, not all of these considerations have been integrated in a single comprehensive SM program for individuals with SCI. Moving forward, in terms of program delivery, a variety of formats should be used. Individuals with SCI have reported that an internet-based SM program would be most ideal and that it should be delivered amongst peers with similar levels of injury and age.²⁴ Further, health literacy should be evaluated so that delivery of material can be adapted as necessary; none of the studies in the current review considered this limitation or at least mentioned it. Finally, it is important for clinicians to consider their strengths and weaknesses with respect to engaging and communicating with patients.³⁹ Nursing practice is well positioned to support and encourage SM strategies; reinforcing attitudes, beliefs, and behaviors within one's daily life may require staff to complete training as this can be a different approach than the traditional manner in which they may have been educated and/or practice clinically.

SCI SM is a complex, multifaceted health issue. There is a danger of having examined the topic from such a broad perspective, merely evaluating programs on a superficial level. Such an intricate approach to a significant health condition may require a greater depth and critical appraisal.⁴⁰ This was not a stand-alone project, rather it was part of a larger endeavor aimed to identify components of SCI SM programs such that a comprehensive program could be developed, implemented, and evaluated in practice. This article reflects an ongoing program of research that links to a national network that aims to continue refining and testing SM interventions in SCI. It was beyond the scope of this review to assess the effectiveness of a specific program style or component or to assess whether they were linked to a social behavioral theory when the authors were developing their program. Therefore, direct, specific policy recommendations for program implementation at this point would be inappropriate. This review is not without limitation. Only English language articles that were published in scientific articles were included; thus, the findings are subject to some element of publication and language bias. Additionally, a grey literature search was not conducted so it is possible a small number of sources may have been missed.

From this scoping review, there are several avenues for future research. Studies should aim to define critical terms such as SM and intentionally describe the components included in the SM programs, especially those informed by theory, because this is rarely done in the current scientific literature.⁴¹ Comparative studies of different SM programs are needed to identify those best suited to certain patient characteristics (eg, sociodemographic, clinical). Finally, contextual research in the form of qualitative designs will help clinicians in identifying how best to tailor SM programs to unique clusters of individuals with SCI using effective messaging, educational, and behavioral strategies.

Acknowledgments

Amanda McIntyre is a Vanier Scholar and is supported by a Vanier Canada Graduate Scholarship. Dr. Wolfe reports grants from Craig H. Neilsen Foundation and from Rick Hansen Institute/Ontario Neurotrauma Foundation during the conduct of the study. The other authors report no conflicts of interest.

APPENDIX A

PubMed

((Self-management OR Self-reliance OR self-efficacy OR coping OR goal setting OR capacity building OR problem solving OR action plan OR self-monitoring OR education OR communication strategies OR locus of control OR cognitive behavioural t* OR advocacy NOT animal)) AND spinal cord injury [MeSH Terms]

EMBASE

Self-management OR Self-reliance OR self-efficacy OR coping OR goal setting OR capacity building OR problem solving OR action plan OR self-monitoring OR education OR communication strategies OR locus of control OR cognitive behavioural t* OR self-advocacy AND (spinal cord injur* or spinal cord injuries/)

MEDLINE

PsychInfo

CINAHL

APPENDIX B.

Research Data

Reviewer and date

Descriptive Data

Title

Author(s)

Year

Country of origin

Study type

Publication type (eg, journal article, book chapter, conference abstract)

Design process article? (yes or no)

Target Population

Number of persons with SCI

Number of persons without SCI

Time post injury

Barlow's Components/Content

Information (ie, about condition treatment)

Drug management

Symptom management

Management of psychological consequences (eg, anger management, depression, injury acceptance, emotions, stress management)

Lifestyle (eg, exercise, exercise motivation/adherence, holidays, leisure activities, nutrition and diet, smoking

Social support (eg. family support, peers, friends)

Communication (eg, assertiveness, communication strategies)

Other (eg, accessing support, action planning, career planning, contraction, coping, decision making, goal setting, problem solving, spirituality, self-efficacy)

PRISMS components/content

Education about condition and management

Information about available resources

Provision of/agreement on specific action plans and/or rescue medication

Regular clinical review

Monitoring of condition with feedback to the patient

Practical support with adherence (medication or behavioral)

Provision of equipment

Safety netting

Training/rehearsal to communicate with HCPs

Training/rehearsal for activities of daily living

Training/rehearsal for practical self-management activities

Training/rehearsal for psychological strategies

Social support

Lifestyle advice and support

Lorig Components/Content

Lorig's six core SM skills (problem solving, decision making, resource utilization, forming patient/health care provide partnership, taking action, self-tailoring)

Intervention/Program Details

Intervention/program name

Delivery location (eg, rehabilitation facility, home, community)

Tutor (eg, doctors, educators, nurses, occupation or physical therapy, psychologist, researcher, social worker)

Mode (eg, group, individual, mix)

Format (eg, audiotapes, booklet, counselling, exercise sessions, group discussion, individual plans, lectures, manual, problem solving, reward systems, sharing experiences, videotapes, role playing)

Self-Management Inquiry

Did they include a self-management definition? If so, which definition?

Did they reference any other self-management definitions?

Which self-management type did they utilize?

Open in a new tab

APPENDIX B.

Training/rehearsal for psychological strategies

Social support

Lifestyle advice and support

Lorig Components/Content

Lorig's six core SM skills (problem solving, decision making, resource utilization, forming patient/health care provide partnership, taking action, self-tailoring)

Intervention/Program Details

Intervention/program name

Delivery location (eg, rehabilitation facility, home, community)

Tutor (eg, doctors, educators, nurses, occupation or physical therapy, psychologist, researcher, social worker)

Mode (eg, group, individual, mix)

Format (eg, audiotapes, booklet, counselling, exercise sessions, group discussion, individual plans, lectures, manual, problem solving, reward systems, sharing experiences, videotapes, role playing)

Self-Management Inquiry

Did they include a self-management definition? If so, which definition?

Did they reference any other self-management definitions?

Which self-management type did they utilize?

Open in a new tab

APPENDIX C

Missing Full-Text Studies

Anzai K, Backwell A, Funk C, van Wyk K, Lawrence W, Jacobsen B, Townson A. Enhancing education delivery: an evaluation of the client education sessions and print materials in a spinal cord injury program. J Spinal Cord Med. 2012;35(5):420–421. [Google Scholar]
Craig A, Hancock K. Difficulties in implementing group cognitive behaviour therapy for spinal cord injured persons: A clinical discussion. J Austral Psychol. 2007;29(2):98–102. [Google Scholar]
Klebine P, Camp S, Roper JR, Dinoff BL, Lane C, Carter R. Using educational videos on secondary conditions to enhance healthcare practice. SCI Nurs. 2006;23(4):1. [Google Scholar]
Klebine P, Roper JF, Camp S, Lane C, Dinoff BL, Sipski ML. Secondary conditions of spinal cord injury health education video series. SCI Nurs. 2007;24(2):3. [Google Scholar]
Libin A, Ljungberg I, Groah S. Experiential learning approach to patient education: An SCI navigator study. Top Spinal Cord Inj Rehabil. 2013;19(1):55. [Google Scholar]
Mackelprange RW. A holistic social work approach providing sexuality education counseling for persons with severe disabilities. In: Valentine DP, Mackelprange RW, editors. Sexuality and Disabilities: A Guide for Human Services Practitioners. New York: Routledge; 2013. [Google Scholar]
Mathewson C, Adkins VK, Lenyoun MA, Schmidt AM, Jones ML. Using telemedicine in the treatment of pressure ulcers. Ostomy Wound Manage. 1999;45:58–62. [PubMed] [Google Scholar]
Olinzock BJ, Elliott MH. Enhancing learning for patients with SCI: The rehabilitation learning readiness assessment guide. Spinal Cord Inj Nurs. 2008;25(2):39–40. [Google Scholar]
Schladen MM, Libin A, Ljungberg I, Tsai B, Groah S. Toward literacy-neutral spinal cord injury information and training. Top Spinal Cord Inj Rehabil. 2011;16(3):70–83. [Google Scholar]
Sheehy SB. A nurse-coached exercise program to increase muscle strength, improve quality of life, and increase self-efficacy in people with tetraplegic spinal cord injuries. J Neurosci Nurs. 2013;45(4):E3–12. doi: 10.1097/JNN.0b013e31829863e2. quiz E1–2. [DOI] [PubMed] [Google Scholar]
Swaine J, Nguyen V, Romeo M, Vanwollingen B. The impact of integrating interface pressure mapping into structured pressure care self-management. Austral Occup Ther J. 2011;58:36–37. [Google Scholar]
Vacco RK. Transitioning to adulthood with SCI: An intensive educational experience. J Spinal Cord Med. 2009;32(4):493. [Google Scholar]
Van Biervliet A, Gest TR. A multimedia guide to spinal cord injury: empowerment through self instruction. Medinfo. 1995;8(Pt 2):1701. [PubMed] [Google Scholar]
Williams S. The role of patient education in the rehabilitation of people with spinal cord injuries. Int J Ther Rehabil. 2008;15(4):174–179. [Google Scholar]

APPENDIX D

Articles Included in the Study

1.Adkins VK, Mathewson C, Ayllon T, Jones ML. The ethics of using contingency management to reduce pressure ulcers: Data from an exploratory study. Ostomy Wound Manage. 1999;45(3):56–58. 60–61. [PubMed] [Google Scholar]
2.Arbour-Nicitopoulos KP, Martin Ginis KA, Latimer AE. Planning, leisure-time physical activity, and coping self-efficacy in persons with spinal cord injury: A randomized controlled trial. Arch Phys Med Rehabil. 2009;90(12):2003–2011. doi: 10.1016/j.apmr.2009.06.019. doi:10.1016/j.apmr.2009.06.019. [DOI] [PubMed] [Google Scholar]
3.Arbour-Nicitopoulos KP, Martin Ginis KA, Latimer-Cheung AE et al. Development of an evidence-informed leisure time physical activity resource for adults with spinal cord injury: The SCI Get Fit Toolkit. Spinal Cord. 2013;51(6):491–500. doi: 10.1038/sc.2013.7. doi:10.1038/sc.2013.7. [DOI] [PubMed] [Google Scholar]
4.Betts AC, Froehlich-Grobe K. Accessible weight loss: Adapting a lifestyle intervention for adults with impaired mobility. Disabil Health J. 2017;10(1):139–144. doi: 10.1016/j.dhjo.2016.06.004. doi:http://dx.doi.org/10.1016/j.dhjo.2016.06.004. [DOI] [PubMed] [Google Scholar]
5.Block P, Skeels SE, Keys CB, Rimmer JH. Shake-It-Up: Health promotion and capacity building for people with spinal cord injuries and related neurological disabilities. Disabil Rehabil. 2005;27(4):185–190. doi: 10.1080/09638280400019583. doi:10.1080/09638280400019583. [DOI] [PubMed] [Google Scholar]
6.Block P, Vanner EA, Keys CB, Rimmer JH, Skeels SE. Project Shake-It-Up: Using health promotion, capacity building and a disability studies framework to increase self efficacy. Disabil Rehabil. 2010;32(9):741–754. doi: 10.3109/09638280903295466. doi:10.3109/09638280903295466. [DOI] [PubMed] [Google Scholar]
7.Boschen KA, Burns A, Bain P et al. Results from an SCI-specific pain self-management project. J Spinal Cord Med. 2010;33(2):182–195. [Google Scholar]
8.Brace JA, Schubart JR. A prospective evaluation of a pressure ulcer prevention and management E-Learning Program for adults with spinal cord injury. Ostomy Wound Manage. 2010;56(8):40–50. [PubMed] [Google Scholar]
9.Brawley LR, Arbour-Nicitopoulos KP, Martin Ginis KA. Developing physical activity interventions for adults with spinal cord injury. Part 3: A pilot feasibility study of an intervention to increase self-managed physical activity. Rehabil Psychol. 2013;58(3):316–321. doi: 10.1037/a0032814. doi:10.1037/a0032814. [DOI] [PubMed] [Google Scholar]
10.Brillhart B. Internet education for spinal cord injury patients: Focus on urinary management. Rehabil Nurs. 2007;32(5):214–219. doi: 10.1002/j.2048-7940.2007.tb00176.x. [DOI] [PubMed] [Google Scholar]
11.Burns AS, Delparte JJ, Ballantyne EC, Boschen KA. Evaluation of an interdisciplinary program for chronic pain after spinal cord injury. PM R. 2013;5(10):832–838. doi: 10.1016/j.pmrj.2013.05.004. doi:10.1016/j.pmrj.2013.05.004. [DOI] [PubMed] [Google Scholar]
12.Byrnes M, Beilby J, Ray P, McLennan R, Ker J, Schug S. Patient-focused goal planning process and outcome after spinal cord injury rehabilitation: Quantitative and qualitative audit. Clin Rehabil. 2012;26(12):1141–1149. doi: 10.1177/0269215512442669. doi:10.1177/0269215512442669. [DOI] [PubMed] [Google Scholar]
13.Captain C. The effects of communication skills training on interaction and psychosocial adjustment among couples living with spinal cord injury. Rehabil Nurs Res. 1995;4(4):111–118. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=1996008957&site=ehost-live. [Google Scholar]
14.Cardenas DD, Hoffman JM, Kelly E, Mayo ME. Impact of a urinary tract infection educational program in persons with spinal cord injury. J Spinal Cord Med. 2004;27(1):47–54. doi: 10.1080/10790268.2004.11753730. [DOI] [PubMed] [Google Scholar]
15.Chen Y, Henson S, Jackson AB, Richards JS. Obesity intervention in persons with spinal cord injury. Spinal Cord. 2006;44:82–91. doi: 10.1038/sj.sc.3101818. doi:10.1038/sj.sc.3101818. [DOI] [PubMed] [Google Scholar]
16.Chen HY, Wu TJ, Lin CC. Improving self-perception and self-efficacy in patients with spinal cord injury: The efficacy of DVD-based instructions. J Clin Nurs. 2015;24(11–12):1666–1675. doi: 10.1111/jocn.12768. doi:10.1111/jocn.12768. [DOI] [PubMed] [Google Scholar]
17.Chompoonimit A, Nualnetr N. The impact of task-oriented client-centered training on individuals with spinal cord injury in the community. Spinal Cord. 2016;54(10):849–854. doi: 10.1038/sc.2015.237. doi:10.1038/sc.2015.237. [DOI] [PubMed] [Google Scholar]
18.Craig A, Hancock K, Chang E, Dickson H. The effectiveness of group psychological intervention in enhancing perceptions of control following spinal cord injury. Austral New Zealand J Psychiatr. 1998;32(1):112–118. doi: 10.3109/00048679809062717. [DOI] [PubMed] [Google Scholar]
19.Craig AR, Hancock K, Dickson H, Chang E. Long-term psychological outcomes in spinal cord injured persons: Results of a controlled trial using cognitive behavior therapy. Arch Phys Med Rehabil. 1997;78(1):33–38. doi: 10.1016/s0003-9993(97)90006-x. [DOI] [PubMed] [Google Scholar]
20.Curcoll ML. Psychological approach to the rehabilitation of the spinal cord injured: The contribution of relaxation techniques. Paraplegia. 1992;30(6):425–427. doi: 10.1038/sc.1992.93. doi:10.1038/sc.1992.93. [DOI] [PubMed] [Google Scholar]
21.Dejoie C, Houlihan B, Williams SR. Using the internet as a treatment modality for individuals with SCI. OT Practice. 2007;12(19):10–14. [Google Scholar]
22.Delparte JJ, Chau BA, Mills S, Burns AS. Spinal cord essentials: The development of an individualized, handout-based patient and family education initiative for people with spinal cord injury. Spinal Cord. 2014;52(5):400–406. doi: 10.1038/sc.2014.22. doi:10.1038/sc.2014.22. [DOI] [PubMed] [Google Scholar]
23.Dorstyn D, Mathias J, Denson L, Robertson M. Effectiveness of telephone counseling in managing psychological outcomes after spinal cord injury: A preliminary study. Arch Phys Med Rehabil. 2012;93(11):2100–2108. doi: 10.1016/j.apmr.2012.06.002. doi:10.1016/j.apmr.2012.06.002. [DOI] [PubMed] [Google Scholar]
24.Dorstyn DS, Mathias JL, Denson LA. Psychological intervention during spinal rehabilitation: A preliminary study. Spinal Cord. 2010;48(10):756–761. doi: 10.1038/sc.2009.161. doi:10.1038/sc.2009.161. [DOI] [PubMed] [Google Scholar]
25.Duchnick JJ, Letsch EA, Curtiss G. Coping effectiveness training during acute rehabilitation of spinal cord injury/dysfunction: A randomized clinical trial. Rehabil Psychol. 2009;54(2):123–132. doi: 10.1037/a0015571. doi:10.1037/a0015571. [DOI] [PubMed] [Google Scholar]
26.Evans CT, Hill JN, Guihan M et al. Implementing a patient education intervention about methicillin-resistant Staphylococcus aureus prevention and effect on knowledge and behavior in veterans with spinal cord injuries and disorders: A pilot randomized controlled trial. J Spinal Cord Med. 2014;37(2):152–161. doi: 10.1179/2045772313Y.0000000153. doi:10.1179/2045772313Y.0000000153. [DOI] [PMC free article] [PubMed] [Google Scholar]
27.Forchheimer M, Tate DG. Enhancing community re-integration following spinal cord injury. NeuroRehabilitation. 2004;19(2):103–113. [PubMed] [Google Scholar]
28.Foulon BL, Ginis KAM. The effects of physical activity vignettes on physical activity-related social cognitions among people with spinal cord injury. Disabil Rehabil. 2013;35(24):2073–2080. doi: 10.3109/09638288.2013.800916. doi:10.3109/09638288.2013.800916. [DOI] [PubMed] [Google Scholar]
29.Froehlich-Grobe K, Aaronson LS, Washbrun RA et al. An exercise trial for wheelchair users: Project workout on wheels. Contemp Clin Trials. 2012;33(2):351–363. doi: 10.1016/j.cct.2011.10.014. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=emed10&NEWS=N&AN=2012055912. [DOI] [PMC free article] [PubMed] [Google Scholar]
30.Froehlich-Grobe K, White GW. Promoting physical activity among women with mobility impairments: A randomized controlled trial to assess a home- and community-based intervention. Arch Phys Med Rehabil. 2004;85(April):640–648. doi: 10.1016/j.apmr.2003.07.012. doi:10.1016/j.apmr.2003.07.012. [DOI] [PubMed] [Google Scholar]
31.Garber SL, Rintala DH, Holmes SA, Rodriguez GP, Friedman J. A structured educational model to improve pressure ulcer prevention knowledge in veterans with spinal cord dysfunction [corrected] [published erratum appears in J Rehabil Res Dev 2002;39(6):711] J Rehabil Res Dev. 2002;39(5):575–587. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2003104950&site=ehost-live. [PubMed] [Google Scholar]
32.Gassaway J, Jones ML, Sweatman WM, Hong M, Anziano P, DeVault K. Effects of peer mentoring on self-efficacy and hospital readmission after inpatient rehabilitation of individuals with spinal cord injury: A randomized controlled trial. Arch Phys Med Rehabil. 2017;98(8):1526–1534. e1522. doi: 10.1016/j.apmr.2017.02.018. doi:10.1016/j.apmr.2017.02.018. [DOI] [PubMed] [Google Scholar]
33.Gilberg BN. The social worker's role in an interdisciplinary spinal cord education group. SCI Psychosoc Process. 1994;7(3):109–111. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=1995004939&site=ehost-live. [Google Scholar]
34.Guest R, Craig A, Nicholson Perry K et al. Resilience following spinal cord injury: A prospective controlled study investigating the influence of the provision of group cognitive behavior therapy during inpatient rehabilitation. Rehabil Psychol. 2015;60(4):311–321. doi: 10.1037/rep0000052. doi:10.1037/rep0000052. [DOI] [PubMed] [Google Scholar]
35.Guihan M, Bombardier CH, Ehde DM et al. Comparing multicomponent interventions to improve skin care behaviors and prevent recurrence in veterans hospitalized for severe pressure ulcers. Arch Phys Med Rehabil. 2014;95(7):1246–1253.e3. doi: 10.1016/j.apmr.2014.01.012. doi:10.1016/j.apmr.2014.01.012. [DOI] [PubMed] [Google Scholar]
36.Guy S, Kras-Dupuis A, Wolfe D. Implementation of a pressure ulcer prevention education best practice for persons with spinal cord injury. J Spinal Cord Med. 2014;37(5):617. [Google Scholar]
37.Hagglund KJ, Clark MJ, Schopp LH, Sherman AK, Acuff ME. Consumer-assistant education to reduce the occurrence of urinary tract infections among persons with spinal cord injury. Top Spinal Cord Inj Rehabil. 2005;10(3):53–62. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=emed7&NEWS=N&AN=2005464986. [Google Scholar]
38.Heenan CM, Piotrowski U. Creation of a client goal-setting framework. SCI Nurs. 2000;17(4):153–161. [PubMed] [Google Scholar]
39.Hernandez B, Hayes EA, Balcazar FE, Keys CB. Responding to the needs of the underserved: a peer-mentor approach. SCI Psychosoc Process. 2001;14(3):142–149. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2002023435&site=ehost-live. [Google Scholar]
40.Heutink M, Post MW, Luthart P et al. Long-term outcomes of a multidisciplinary cognitive behavioural programme for coping with chronic neuropathic spinal cord injury pain. J Rehabil Med. 2014;46(6):540–545. doi: 10.2340/16501977-1798. doi:10.2340/16501977-1798. [DOI] [PubMed] [Google Scholar]
41.Heutink M, Post MWM, Bongers-Janssen HMH et al. The CONECSI trial: Results of a randomized controlled trial of a multidisciplinary cognitive behavioral program for coping with chronic neuropathic pain after spinal cord injury. Pain. 2012;153(1):120–128. doi: 10.1016/j.pain.2011.09.029. doi:10.1016/j.pain.2011.09.029. [DOI] [PubMed] [Google Scholar]
42.Hilgart M, Ritterband L, Baxter K et al. Development and perceived utility and impact of a skin care Internet intervention. Internet Interventions. 2015;1(3):149–157. [Google Scholar]
43.Hilton G, Fraser R. Connecting and collaborating: The future of spinal cord injury information and education. Neurorehabil Neural Repair. 2012;26(6):654–694. [Google Scholar]
44.Hirsche RC, Williams B, Jones A, Manns P. Chronic disease self-management for individuals with stroke, multiple sclerosis and spinal cord injury. Disabil Rehabil. 2011;33(13–14):1136–1146. doi: 10.3109/09638288.2010.523103. doi:10.3109/09638288.2010.523103. [DOI] [PubMed] [Google Scholar]
45.Hoffman J, Salzman C, Garbaccio C, Burns SP, Crane D, Bombardier C. Use of on-demand video to provide patient education on spinal cord injury. J Spinal Cord Med. 2011;34(4):404–409. doi: 10.1179/2045772311Y.0000000015. doi:10.1179/2045772311Y.0000000015. [DOI] [PMC free article] [PubMed] [Google Scholar]
46.Houlihan BV, Brody M, Everhart-Skeels S et al. Randomized trial of a peer-led, telelphine-based empowerment intervention for persons with chronic spinal injury improves health self-management. Arch Phys Med Rehabil. 2017;98(6):1067–1076. doi: 10.1016/j.apmr.2017.02.005. [DOI] [PubMed] [Google Scholar]
47.Houlihan B, DeJoie C, Williams S. The Internet as a treatment modality: A model program for clients with SCI. OT Practice. 2007;12(19):10–14. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2009698437&site=ehost-live. [Google Scholar]
48.Houlihan BV, Jette A, Paasche-Orlow M et al. A telerehabilitation intervention for persons with spinal cord dysfunction. Am J Phys Med Rehabil. 2011;90(9):756–764. doi: 10.1097/PHM.0b013e31820b140f. doi:10.1097/PHM.0b013e31820b140f. [DOI] [PubMed] [Google Scholar]
49.Houlihan BV, Jette A, Friedman RH et al. A pilot study of a telehealth intervention for persons with spinal cord dysfunction. Spinal Cord. 2013;51(9):715–720. doi: 10.1038/sc.2013.45. doi:10.1038/sc.2013.45. [DOI] [PubMed] [Google Scholar]
50.Hughes RB, Robinson-Whelen S, Taylor HB, Hall JW. Stress self-management: An intervention for women with physical disabilities. Women's Health Issues. 2006;16(6):389–399. doi: 10.1016/j.whi.2006.08.003. doi:10.1016/j.whi.2006.08.003. [DOI] [PubMed] [Google Scholar]
51.Hughley E., Jr. Copology: A contemporary model useful for coping with the stress of spinal cord injury... this paper was presented at the 1993 Seventh Annual Conference of the American Association of Spinal Cord Injury Psychologists and Social Workers. SCI Psychosoc Process. 1994;7(3):112–116. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=1995004940&site=ehost-live. [Google Scholar]
52.Jalovcic D, Pentland W. Accessing peers' and health care experts' wisdom: A telephone peer support program for women with SCI living in rural and remote areas. Top Spinal Cord Inj Rehabil. 2009;15(1):59–74. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2010326600&site=ehost-live. [Google Scholar]
53.Kennedy P. Coping effectively with spinal cord injuries: A group program. In: Kennedy P, editor. Coping Effectively with Spinal Cord Injuries: A Group Program: Workbook. New York: Oxford University Press; 2009. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=psyc6&NEWS=N&AN=2008-16212-000. [Google Scholar]
54.Kennedy P, Duff J, Evans M, Beedie A. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. Br J Clin Psychol. 2003;42(Pt 1):41–52. doi: 10.1348/014466503762842002. doi:10.1348/014466503762842002. [DOI] [PubMed] [Google Scholar]
55.Kim JY, Cho E. Evaluation of a self-efficacy enhancement program to prevent pressure ulcers in patients with a spinal cord injury. Jpn J Nurs Sci. 2017;14(1):76–86. doi: 10.1111/jjns.12136. doi:10.1111/jjns.12136. [DOI] [PubMed] [Google Scholar]
56.King C, Kennedy P. Coping effectiveness training for people with spinal cord injury: Preliminary results of a controlled trial. Br J Clin Psychol. 1999;38(Pt 1)(1):5–14. doi: 10.1348/014466599162629. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=med4&NEWS=N&AN=10212733. [DOI] [PubMed] [Google Scholar]
57.Klaas SJ, Flaum T. Facing disability: An internet-based approach to spinal cord injury education and peer support. Top Spinal Cord Inj Rehabil. 2013;19(1):36–65. [Google Scholar]
58.Kolakowsky-Hayner SA, Wright J, Shem K, Medel R, Duong T. An effective community-based mentoring program for return to work and school after brain and spinal cord injury. NeuroRehabilitation. 2012;31(1):63–73. doi: 10.3233/NRE-2012-0775. doi:10.3233/NRE-2012-0775. [DOI] [PubMed] [Google Scholar]
59.Kooijmans H, Post MWM, van der Woude LHV et al. Randomized controlled trial of a self-management intervention in persons with spinal cord injury: Design of the HABITS (Healthy Active Behavioural Intervention in SCI) study. Disabil Rehabil. 2013;35(13):1111–1118. doi: 10.3109/09638288.2012.718406. doi:10.3109/09638288.2012.718406. [DOI] [PubMed] [Google Scholar]
60.Kooijmans H, Post MWM, Stam HJ et al. Effectiveness of a self-management intervention to promote an active lifestyle in persons with long-term spinal cord injury: The HABITS randomized clinical trial. Neurorehabil Neural Repair. 2017;31(12):991–1004. doi: 10.1177/1545968317736819. doi:10.1177/1545968317736819. [DOI] [PubMed] [Google Scholar]
61.Kosma M, Cardinal BJ, McCubbin JA. A pilot study of a web-based physical activity motivational program for adults with physical disabilities. Disabil Rehabil. 2005;27(23):1435–1442. doi: 10.1080/09638280500242713. doi:10.1080/09638280500242713. [DOI] [PubMed] [Google Scholar]
62.Kuemmel A, Seton JM, Washington R, Strozewski R, Tuck L. Spinal cord injury pain management: Telehealth group intervention approach. Journal of Spinal Cord Medicine. 2013;36(5):504–523. [Google Scholar]
63.Laskin JJ, James SA, Cantwell BM. A fitness and wellness program for people with spinal cord injury. Top Spinal Cord Inj Rehabil. 1997;3(1):16–33. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=1999039058&site=ehost-live. [Google Scholar]
64.Latimer AE, Ginis KAM, Arbour KP. The efficacy of an implementation intention intervention for promoting physical activity among individuals with spinal cord injury: A randomized controlled trial. Rehabil Psychol. 2006;51(4):273–280. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2009353101&site=ehost-live. [Google Scholar]
65.Latimer-Cheung AE, Arbour-Nicitopoulos KP, Brawley LR et al. Developing physical activity interventions for adults with spinal cord injury. Part 2: Motivational counseling and peer-mediated interventions for people intending to be active. Rehabil Psychol. 2013;58(3):307–315. doi: 10.1037/a0032816. doi:10.1037/a0032816. [DOI] [PubMed] [Google Scholar]
66.Libin A, Schladen M, Ljungber I, Tsai B, Groah S. HTV phenomena: Youtube as a health literacy platform for persons with SCI. Topics in Spinal Cord Injury Rehabilitation. 2013;19(1):36–65. [Google Scholar]
67.Lindsey LL, Klebine PL. SCI health education multimedia series: Enhancing wellness with technology. SCI Nurs. 2001;18(1):37–38. [PubMed] [Google Scholar]
68.Ljungberg I, Kroll T, Libin A, Gordon S. Using peer mentoring for people with spinal cord injury to enhance self-efficacy beliefs and prevent medical complications. J Clin Nurs. 2011;20(3–4):351–358. doi: 10.1111/j.1365-2702.2010.03432.x. doi:10.1111/j.1365-2702.2010.03432.x. [DOI] [PubMed] [Google Scholar]
69.Ljungberg I, Libin A, Groah S. Effect of a SCI navigator on pressure ulcer knowledge. J Spinal Cord Med. 2010;33(2):182–195. [Google Scholar]
70.Liusuwan RA, Widman LM, Abresch RT, Johnson AJ, McDonald CM. Behavioral intervention, exercise, and nutrition education to improve health and fitness (BENEfit) in adolescents with mobility impairment due to spinal cord dysfunction. J Spinal Cord Med. 2007;30(Suppl 1):S119–126. doi: 10.1080/10790268.2007.11754615. [DOI] [PMC free article] [PubMed] [Google Scholar]
71.Lucke KT, Lucke JF, Martinez H. Evaluation of a professional + peer telephone intervention with spinal cord injured individuals following rehabilitation in South Texas. J Multicult Nurs Health. 2004;10:68–74. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2004206994&site=ehost-live. [Google Scholar]
72.Mackelprang JL, Hoffman JM, Garbaccio C, Bombardier CH. Outcomes and lessons learned from a randomized controlled trial to reduce health care utilization during the first year after spinal cord injury rehabilitation: Telephone counseling versus usual care. Arch Phys Med Rehabil. 2016;97(10):1793–1796. doi: 10.1016/j.apmr.2016.03.002. e1791. doi:10.1016/j.apmr.2016.03.002. [DOI] [PubMed] [Google Scholar]
73.Meade MA, Wilson C. Issues of implementation and feasibility of an in-person, individually administered self-management intervention for adults with spinal cord injury. J Spinal Cord Med. 2013;36(5):504–523. [Google Scholar]
74.Meade MA, Trumpower B, Forchheimer M, DiPonio L. Development and feasibility of health mechanics: A self-management program for individuals with spinal cord injury. Top Spinal Cord Inj Rehabil. 2016;22(2):121–134. doi: 10.1310/sci2202-121. doi:10.1310/sci2202-121. [DOI] [PMC free article] [PubMed] [Google Scholar]
75.Migliorini C, Tonge B, Sinclair A. Developing and piloting ePACT: A flexible psychological treatment for depression in people living with chronic spinal cord injury. Behav Change. 2011;28(1):45–54. https://www.cambridge.org/core/journals/behaviour-change/article/developing-and-piloting-epact-a-flexible-psychological-treatment-for-depression-in-people-living-with-chronic-spinal-cord-injury/875FC64379ED6559-DEF7A136BA61DFC2. [Google Scholar]
76.Mills S, Burns AS, Delpart JJ, Chau B, Shepherd J, Badger-Brown K, Wolfe D. A comprehensive, multimodal, integrated approach to patient and family education following spinal cord injury (SCI) Top Spinal Cord Inj Rehabil. 2011;16(1):53–117. [Google Scholar]
77.Newman SD, Gillenwaterb G, Toatleya S, Rodgersad MD, Toodb N, Epperlyc D, Andrews JO. A community-based participatory research approach to the development of a Peer Navigator health promotion intervention for people with spinal cord injury. Disabil Health J. 2014;7(4):478–484. doi: 10.1016/j.dhjo.2014.04.006. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=prem&NEWS=N&AN=25224988. [DOI] [PMC free article] [PubMed] [Google Scholar]
78.Nicholson Perry K, Nicholas MK, Middleton J. Comparison of a pain management program with usual care in a pain management center for people with spinal cord injury-related chronic pain. Clin J Pain. 2010;26(3):206–216. doi: 10.1097/AJP.0b013e3181bff8f3. doi:10.1097/AJP.0b013e3181bff8f3. [DOI] [PubMed] [Google Scholar]
79.Nicholson Perry K, Nicholas MK, Middleton J. Multidisciplinary cognitive behavioural pain management programmes for people with a spinal cord injury: Design and implementation. Disabil Rehabil. 2011;33(13–14):1272–1280. doi: 10.3109/09638288.2010.524276. doi:10.3109/09638288.2010.524276. [DOI] [PubMed] [Google Scholar]
80.Nooijen CF, Stam HJ, Schoenmakers I et al. Working mechanisms of a behavioural intervention promoting physical activity in persons with subacute spinal cord injury. J Rehabil Med. 2016;48(7):583–588. doi: 10.2340/16501977-2110. doi:10.2340/16501977-2110. [DOI] [PubMed] [Google Scholar]
81.Nooijen CF, Stam HJ, Sluis T, Valent L, Twisk J, van den Berg-Emons RJ. A behavioral intervention promoting physical activity in people with subacute spinal cord injury: secondary effects on health, social participation and quality of life. Clin Rehabil. 2017;31(6):772–780. doi: 10.1177/0269215516657581. doi:10.1177/0269215516657581. [DOI] [PubMed] [Google Scholar]
82.Norrbrink Budh C, Kowalski J, Lundeberg T. A comprehensive pain management programme comprising educational, cognitive and behavioural interventions for neuropathic pain following spinal cord injury. J Rehabil Med. 2006;38(3):172–180. doi: 10.1080/16501970500476258. doi:10.1080/16501970500476258. [DOI] [PubMed] [Google Scholar]
83.Patterson RW, Bushnik T, Burdsall D, Wright J. Considerations of peer support for persons with high tetraplegia. Top Spinal Cord Inj Rehabil. 2005;10(3):30–37. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=emed7&NEWS=N&AN=2005464984. [Google Scholar]
84.Pellerito JMJ. The effects of traditional and computer-aided instruction on promoting independent skin care in adults with paraplegia. Occup Ther Int. 2003;10(1):1–19. doi: 10.1002/oti.174. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2003154299&site=ehost-live. [DOI] [PubMed] [Google Scholar]
85.Phillips VL, Temkin A, Vesmarovich S, Burns R, Idleman L. Using telehealth interventions to prevent pressure ulcers in newly injured spinal cord injury patients post-discharge. Results from a pilot study. Int J Technol Assess Health Care. 1999;15(4):749–755. [PubMed] [Google Scholar]
86.Phillips VL, Vesmarovich S, Hauber R, Wiggers E, Egner A. Telehealth: Reaching out to newly injured spinal cord patients. Publ Health Rep (Washington, DC: 1974) 2001;116(Suppl):94–102. doi: 10.1093/phr/116.S1.94. [DOI] [PMC free article] [PubMed] [Google Scholar]
87.Pollack SF, Zuger RR, Walsh J. Moving Out Services for Education and Support (MOSES): A model program for individuals with spinal cord injury. SCI Nurs. 1992;9(3):79–82. [PubMed] [Google Scholar]
88.Price G, Lightbody S. A community living skills education programme within spinal cord injury rehabilitation. Austral Occup Ther J. 1994;41(1):37–40. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=1994181968&site=ehost-live. [Google Scholar]
89.Pryor J, Jannings W. Promoting patient self-efficacy in bowel care following spinal cord injury: A pilot project. J Australasian Rehabil Nurses Assoc. 2005;8(4):21. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2009077191&site=ehost-live. [Google Scholar]
90.Radomski M, Finkelstein M, Hagel S, Masemer S, Theis J, Thompson M. A pilot wellness and weight management program for individuals with spinal cord injury: Participants' goals and outcomes. Top Spinal Cord Inj Rehabil. 2011;17(2):59–69. doi:10.1310/sci1702-59. [Google Scholar]
91.Rintala DH, Garber SL, Friedman JD, Holmes SA. Preventing recurrent pressure ulcers in veterans with spinal cord injury: Impact of a structured education and follow-up intervention. Arch Phys Med Rehabil. 2008;89(8):1429–1441. doi: 10.1016/j.apmr.2008.01.015. doi:10.1016/j.apmr.2008.01.015. [DOI] [PubMed] [Google Scholar]
92.Rose A, Piatt JA, Zahl M, Kim K. The effect of a self-efficacy based forum on life satisfaction for individuals with spinal cord injury or disease. Annu Therapeut Recreat. 2008;16:49–56. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2010094018&site=ehost-live. [Google Scholar]
93.Rubinelli S, Collm A, Glässel A et al. Designing interactivity on consumer health websites: PARAFORUM for spinal cord injury. Patient EducCounsel. 2013;93(3):459–463. doi: 10.1016/j.pec.2013.09.015. doi:10.1016/j.pec.2013.09.015. [DOI] [PubMed] [Google Scholar]
94.Sable JR, Gravink J. Project PATH (Promoting Access Transition and Health): A health promoting intervention for people with spinal cord injuries. Ann Therapeut Recreat. 1999;8:33. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2004035596&site=ehost-live. [Google Scholar]
95.Salci LE, Perrier MJ, Ginis S, Martin Ginis KA. Active Living Leaders Training Program for adults with spinal cord injury: A pilot study. Spinal Cord. 2016;54(9):662–669. doi: 10.1038/sc.2015.168. doi:10.1038/sc.2015.168. [DOI] [PubMed] [Google Scholar]
96.Schubart J. An e-learning program to prevent pressure ulcers in adults with spinal cord injury: A pre- and post- pilot test among rehabilitation patients following discharge to home. Ostomy Wound Manage. 2012;58(10):38–49. [PubMed] [Google Scholar]
97.Shepherd JD, Badger-Brown KM, Legassic MS, Walia S, Wolfe DL. SCI-U: e-Learning for patient education in spinal cord injury rehabilitation. J Spinal Cord Med. 2012;35(5):319–329. doi: 10.1179/2045772312Y.0000000044. doi:10.1179/2045772312Y.0000000044. [DOI] [PMC free article] [PubMed] [Google Scholar]
98.Tamplin J, Baker FA, Grocke D, Berlowitz DJ. Thematic analysis of the experience of group music therapy for people with chronic quadriplegia. Top Spinal Cord Inj Rehabil. 2014;20(3):236–247. doi: 10.1310/sci2003-236. doi:10.1310/sci2003-236. [DOI] [PMC free article] [PubMed] [Google Scholar]
99.Van der Woude LHV, de Groot S, Postema K, Bussmann JBJ, Janssen TWJ, Post MWM. Active LifestyLe Rehabilitation Interventions in aging Spinal Cord injury (ALLRISC): A multicentre research program. Disabil Rehabil. 2012;35(13):1–7. doi: 10.3109/09638288.2012.718407. doi:10.3109/09638288.2012.718407. [DOI] [PubMed] [Google Scholar]
100.Verwer JH, van Leeuwen CM, Bolier L, Post MW. Feasibility of an online well-being intervention for people with spinal cord injury: A pilot study. Spinal Cord. 2016;54(6):473–477. doi: 10.1038/sc.2015.165. doi:10.1038/sc.2015.165. [DOI] [PubMed] [Google Scholar]
101.Vines CL. Promoting community reentry: The TIRR PEERS program. SCI Psychosoc Process. 2000;13(4):185–187. [Google Scholar]
102.Warms CA, Belza BL, Whitney JD, Mitchell PH, Stiens SA. Lifestyle physical activity for individuals with spinal cord injury: A pilot study. Am J Health Promot. 2004;18(4):288–291. doi: 10.4278/0890-1171-18.4.288. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=emed6&NEWS=N&AN=2004108882. [DOI] [PubMed] [Google Scholar]
103.Wilde MH, Fairbanks E, Parshall R et al. Development of a web-based self-management intervention for intermittent urinary catheter users with spinal cord injury. Comput Inform Nurs. 2015;33(11):478–486. doi: 10.1097/CIN.0000000000000182. doi:10.1097/cin.0000000000000182. [DOI] [PMC free article] [PubMed] [Google Scholar]
104.Wilde MH, Fairbanks E, Parshall R et al. A web-based self-management intervention for intermittent catheter users. Urol Nurs. 2015;35(3):127–133. 138. [PMC free article] [PubMed] [Google Scholar]
105.Wilde MH, McMahon JM, Fairbanks E et al. Feasibility of a web-based self-management intervention for intermittent urinary catheter users with spinal cord injury. J Wound Ostomy Contin Nurs. 2016;43(5):529–538. doi: 10.1097/WON.0000000000000256. doi:10.1097/WON.0000000000000256. [DOI] [PMC free article] [PubMed] [Google Scholar]
106.Williams S. Improving the continuing care for individuals with spinal cord injuries. Br J Nurs. 2005;14(3):161–165. doi: 10.12968/bjon.2005.14.3.17523. doi:10.12968/bjon.2005.14.3.17523. [DOI] [PubMed] [Google Scholar]
107.Wise HH, Jackson Thomas K, Nietert PJ, Brown DD, Sword DO, Diehl N. Home physical activity programs for the promotion of health and wellness in individuals with spinal cord injury. Top Spinal Cord Inj Rehabil. 2009;14(4):122–132. doi:10.1310/sci1404-122. [Google Scholar]
108.Yasenchak PA, Bridle MJ. A low-literacy skin care manual for spinal cord injury patients. Patient Educ Couns. 1993;22(1):1–5. doi: 10.1016/0738-3991(93)90083-9. [DOI] [PubMed] [Google Scholar]
109.Young JM, Lawrence W, Quick P. A unique role: The peer mentor on the spinal cord team at G.F. Strong Rehab Centre. Healthc Manage Forum. 1999;12(3):51–53. doi: 10.1016/S0840-4704(10)60719-3. [DOI] [PubMed] [Google Scholar]
110.Zahl ML, Compton DM, Kim K, Rosenbluth JP. SCI/D forum to increase active living: the effect of a self-efficacy and self-affirmation based SCI/D forum on active living in adults with spinal cord injury/disease. SCI Psychosoc Process. 2008;21(2):5–13. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2010418795&site=ehost-live. [Google Scholar]
111.Zemper ED, Tate DG, Roller S, Forchheimer M, Chiodo A, Nelson VS, Scelza W. Assessment of a holistic wellness program for persons with spinal cord injury. Am J Phys MedRehabil. 2003;82(12):957–971. doi: 10.1097/01.PHM.0000098504.78524.E2. doi:10.1097/01.PHM.0000098504.78524.E2. [DOI] [PubMed] [Google Scholar]
112.Zinman A, Digout N, Bain P, Haycock S, Hebert D, Hitzig SL. Evaluation of a community reintegration outpatient program service for community-dwelling persons with spinal cord injury. Rehabilitation Research and Practice. 2014 doi: 10.1155/2014/989025. doi: 10.1155/2014/989025. [DOI] [PMC free article] [PubMed] [Google Scholar]

REFERENCES

1.New PW. Secondary conditions in a community sample of people with spinal cord damage. J Spinal Cord Med. 2016;39(6):665–670. doi: 10.1080/10790268.2016.1138600. [DOI] [PMC free article] [PubMed] [Google Scholar]
2.Sezer N, Akkus S, Ugurlu FG. Chronic complications of spinal cord injury. World J Orthop. 2015;6(1):24–33. doi: 10.5312/wjo.v6.i1.24. [DOI] [PMC free article] [PubMed] [Google Scholar]
3.Craven C, Hitzig SL, Mittmann N. Impact of impairment and secondary health conditions on health preference among Canadians with chronic spinal cord injury. J Spinal Cord Med. 2012;35(5):361–370. doi: 10.1179/2045772312Y.0000000046. [DOI] [PMC free article] [PubMed] [Google Scholar]
4.Adriaansen JJ, Post MW, de Groot S et al. Secondary health conditions in persons with spinal cord injury: A longitudinal study from one to five years post-discharge. J Rehabil Med. 2013;45(10):1016–1022. doi: 10.2340/16501977-1207. [DOI] [PubMed] [Google Scholar]
5.Hitzig SL, Campbell KA, McGillivray CF, Boschen KA, Craven BC. Understanding age effects associated with changes in secondary health conditions in a Canadian spinal cord injury cohort. Spinal Cord. 2010;48(4):330–335. doi: 10.1038/sc.2009.135. [DOI] [PubMed] [Google Scholar]
6.Lundstrom U, Wahman K, Seiger A, Gray DB, Isaksson G, Lilja M. Participation in activities and secondary health complications among persons aging with traumatic spinal cord injury. Spinal Cord. doi: 10.1038/sc.2016.153. [published online ahead of print November 13, 2016] [DOI] [PubMed] [Google Scholar]
7.Adriaansen JJ, Ruijs LE, van Koppenhagen CF et al. Secondary health conditions and quality of life in persons living with spinal cord injury for at least ten years. J Rehabil Med. 2016;48(10):853–860. doi: 10.2340/16501977-2166. [DOI] [PubMed] [Google Scholar]
8.Gabbe BJ, Nunn A. Profile and costs of secondary conditions resulting in emergency department presentations and readmission to hospital following traumatic spinal cord injury. Injury. 2016;47(8):1847–1855. doi: 10.1016/j.injury.2016.06.012. [DOI] [PubMed] [Google Scholar]
9.Squair JW, White BA, Bravo GI, Martin Ginis KA, Krassioukov AV. The economic burden of autonomic dysreflexia during hospitalization for individuals with spinal cord injury. J Neurotrauma. 2016;33(15):1422–1427. doi: 10.1089/neu.2015.4370. [DOI] [PubMed] [Google Scholar]
10.Dismuke CE, Egede LE, Saunders L, Krause JS. Diabetes increases financial burden of individuals with traumatic spinal cord injury (TSCI) Spinal Cord. 2015;53(2):135–138. doi: 10.1038/sc.2014.200. [DOI] [PubMed] [Google Scholar]
11.Radhakrishna M, Makriyianni I, Marcoux J, Zhang X. Effects of injury level and severity on direct costs of care for acute spinal cord injury. Int J Rehabil Res. 2014;37(4):349–353. doi: 10.1097/MRR.0000000000000081. [DOI] [PubMed] [Google Scholar]
12.Krueger H, Noonan VK, Trenaman LM, Joshi P, Rivers CS. The economic burden of traumatic spinal cord injury in Canada. Chronic Dis Inj Can. 2013;33(3):113–122. [PubMed] [Google Scholar]
13.Dobkin BH. Behavioral self-management strategies for practice and exercise should be included in neurologic rehabilitation trials and care. Curr Opin Neurol. 2016;29(6):693–699. doi: 10.1097/WCO.0000000000000380. [DOI] [PMC free article] [PubMed] [Google Scholar]
14.Burns AS, Delparte JJ, Ballantyne EC, Boschen KA. Evaluation of an interdisciplinary program for chronic pain after spinal cord injury. PM R. 2013;5(10):832–838. doi: 10.1016/j.pmrj.2013.05.004. [DOI] [PubMed] [Google Scholar]
15.Adkins VK, Mathewson C, Ayllon T, Jones ML. The ethics of using contingency management to reduce pressure ulcers: Data from an exploratory study. Ostomy/Wound Manage. 1999;45(3):56–58. 60–61. [PubMed] [Google Scholar]
16.Kosma M, Cardinal BJ, McCubbin JA. A pilot study of a web-based physical activity motivational program for adults with physical disabilities. Disabil Rehabil. 2005;27(23):1435–1442. doi: 10.1080/09638280500242713. [DOI] [PubMed] [Google Scholar]
17.Chen Y, Henson S, Jackson AB, Richards JS. Obesity intervention in persons with spinal cord injury. Spinal Cord. 2006;44(2):82–91. doi: 10.1038/sj.sc.3101818. [DOI] [PubMed] [Google Scholar]
18.Dorstyn DS, Mathias JL, Denson LA. Psychological intervention during spinal rehabilitation: A preliminary study. Spinal Cord. 2010;48(10):756–761. doi: 10.1038/sc.2009.161. [DOI] [PubMed] [Google Scholar]
19.Forchheimer M, Tate DG. Enhancing community re-integration following spinal cord injury. NeuroRehabilitation. 2004;19(2):103–113. [PubMed] [Google Scholar]
20.Zinman A, Digout N, Bain P, Haycock S, Hebert D, Hitzig SL. Evaluation of a community reintegration outpatient program service for community-dwelling persons with spinal cord injury. Rehabil Res Pract. 2014;2014 doi: 10.1155/2014/989025. 989025. [DOI] [PMC free article] [PubMed] [Google Scholar]
21.Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: A review. Patient Educ Couns. 2002;48(2):177–187. doi: 10.1016/s0738-3991(02)00032-0. [DOI] [PubMed] [Google Scholar]
22.Pearce G, Parke HL, Pinnock H et al. The PRISMS taxonomy of self-management support: Derivation of a novel taxonomy and initial testing of its utility. J Health Serv Res Policy. 2016;21(2):73–82. doi: 10.1177/1355819615602725. [DOI] [PubMed] [Google Scholar]
23.Munce SE, Webster F, Fehlings MG, Straus SE, Jang E, Jaglal SB. Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: An opportunity for improved care delivery. BMC Neurol. 2016;16:11. doi: 10.1186/s12883-016-0534-2. [DOI] [PMC free article] [PubMed] [Google Scholar]
24.Munce SE, Fehlings MG, Straus SE et al. Views of people with traumatic spinal cord injury about the components of self-management programs and program delivery: A Canadian pilot study. BMC Neurol. 2014;14:209. doi: 10.1186/s12883-014-0209-9. [DOI] [PMC free article] [PubMed] [Google Scholar]
25.Taylor DM, Stone SD, Huijbregts MP. Remote participants' experiences with a group-based stroke self-management program using videoconference technology. Rural Remote Health. 2012;12:1947. [PubMed] [Google Scholar]
26.Lorig K, Ritter PL, Plant K. A disease-specific self-help program compared with a generalized chronic disease self-help program for arthritis patients. Arthritis Rheum. 2005;53(6):950–957. doi: 10.1002/art.21604. [DOI] [PubMed] [Google Scholar]
27.Munce SE, Straus SE, Fehlings MG et al. Impact of psychological characteristics in self-management in individuals with traumatic spinal cord injury. Spinal Cord. 2016;54(1):29–33. doi: 10.1038/sc.2015.91. [DOI] [PMC free article] [PubMed] [Google Scholar]
28.Munce SE, Webster F, Fehlings MG, Straus SE, Jang E, Jaglal SB. Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: A qualitative descriptive study. BMC Neurol. 2014;14:48. doi: 10.1186/1471-2377-14-48. [DOI] [PMC free article] [PubMed] [Google Scholar]
29.Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Social Res Methodol. 2005;8(1):19–32. [Google Scholar]
30.Levac D, Colquhoun H, O'Brien KK. Scoping studies: Advancing the methodology. Implement Sci. 2010;5:69. doi: 10.1186/1748-5908-5-69. [DOI] [PMC free article] [PubMed] [Google Scholar]
31.Davis K, Drey N, Gould D. What are scoping studies? A review of the nursing literature. Int J Nurs Stud. 2009;46(10):1386–1400. doi: 10.1016/j.ijnurstu.2009.02.010. [DOI] [PubMed] [Google Scholar]
32.Lorig KR, Holman H. Self-management education: History, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1–7. doi: 10.1207/S15324796ABM2601_01. [DOI] [PubMed] [Google Scholar]
33.Munce SEP, Allin S, Wolfe DL et al. Using the theoretical domains framework to guide the development of a self-management program for individuals with spinal cord injury: Results from a national stakeholder advisory group. J Spinal Cord Med. 2017;40(6):687–695. doi: 10.1080/10790268.2017.1356437. 35. [DOI] [PMC free article] [PubMed] [Google Scholar]
34.Richardson EJ, Richards JS, Stewart CC, Ness TJ. Effects of nicotine on spinal cord injury pain: A randomized, double-blind, placebo controlled crossover trial. Top Spinal Cord Inj Rehabil. 2012;18(2):101–105. doi: 10.1310/sci1802-101. 33. [DOI] [PMC free article] [PubMed] [Google Scholar]
35.Guilcher SJ, Casciaro T, Lemieux-Charles L, Craven C, McColl MA, Jaglal SB. Social networks and secondary health conditions: The critical secondary team for individuals with spinal cord injury. J Spinal Cord Med. 2012;35(5):330–342. doi: 10.1179/2045772312Y.0000000035. 34. [DOI] [PMC free article] [PubMed] [Google Scholar]
36.Richardson J, Loyola-Sanchez A, Sinclair S et al. Self-management interventions for chronic disease: A systematic scoping review. Clinical rehabilitation. 2014;28(11):1067–1077. doi: 10.1177/0269215514532478. [DOI] [PubMed] [Google Scholar]
37.Henwood P, Ellis J, Logan J, Dubouloz CJ, D'Eon J. Acceptance of chronic neuropathic pain in spinal cord injured persons: A qualitative approach. Pain Manage Nurs. 2012;13(4):215–222. doi: 10.1016/j.pmn.2010.05.005. [DOI] [PubMed] [Google Scholar]
38.Schwarzer R, Lippke S, Luszczynska A. Mechanisms of health behavior change in persons with chronic illness or disability: The Health Action Process Approach (HAPA) Rehabil Psychol. 2011;56(3):161–170. doi: 10.1037/a0024509. [DOI] [PubMed] [Google Scholar]
39.Mudge S, Kayes N, McPherson K. Who is in control? Clinicians' view on their role in self-management approaches: a qualitative metasynthesis. BMJ Open. 2015;5(5) doi: 10.1136/bmjopen-2014-007413. e007413. [DOI] [PMC free article] [PubMed] [Google Scholar]
40.Daudt HML, van Mossel C, Scott SJ. Enhancing the scoping study methodology: A large, inter-professional team's experience with Arksey and O'Malley's framework. BMC Med Res Methodol. 2013;13(1):48. doi: 10.1186/1471-2288-13-48. [DOI] [PMC free article] [PubMed] [Google Scholar]
41.Modi AC, Pai AL, Hommel KA et al. Pediatric self-management: A framework for research, practice, and policy. Pediatrics. 2012;129(2):e473–485. doi: 10.1542/peds.2011-1635. [DOI] [PMC free article] [PubMed] [Google Scholar]
42.Evans CT, Hill JN, Guihan M et al. Implementing a patient education intervention about methicillin-resistant Staphylococcus aureus prevention and effect on knowledge and behavior in veterans with spinal cord injuries and disorders: A pilot randomized controlled trial. J Spinal Cord Med. 2014;37(2):152–161. doi: 10.1179/2045772313Y.0000000153. [DOI] [PMC free article] [PubMed] [Google Scholar]
43.Phillips VL, Vesmarovich S, Hauber R, Wiggers E, Egner A. Telehealth: Reaching out to newly injured spinal cord patients. Public Health Rep (Washington, DC : 1974) 2001;116(suppl 1):94–102. doi: 10.1093/phr/116.S1.94. [DOI] [PMC free article] [PubMed] [Google Scholar]
44.Pryor J, Jannings W. Promoting patient self-efficacy in bowel care following spinal cord injury: A pilot project. J Australasian Rehabil Nurses Assoc. 2005;8(4):21–29. [Google Scholar]
45.Warms CA, Belza BL, Whitney JD, Mitchell PH, Stiens SA. Lifestyle physical activity for individuals with spinal cord injury: A pilot study. Am J Health Promot. 2004;18(4):288–291. doi: 10.4278/0890-1171-18.4.288. [DOI] [PubMed] [Google Scholar]
46.Williams S. Improving the continuing care for individuals with spinal cord injuries. Br J Nurs. 2005;14(3):161–165. doi: 10.12968/bjon.2005.14.3.17523. [DOI] [PubMed] [Google Scholar]
47.Phillips VL, Temkin A, Vesmarovich S, Burns R, Idleman L. Using telehealth interventions to prevent pressure ulcers in newly injured spinal cord injury patients post-discharge. Results from a pilot study. Int J Techol Assess Health Care. 1999;15(4):749–755. [PubMed] [Google Scholar]
48.Wilde MH, Fairbanks E, Parshall R et al. Development of a web-based self-management intervention for intermittent urinary catheter users with spinal cord injury. Comput Inform Nurs. 2015;33(11):478–486. doi: 10.1097/CIN.0000000000000182. [DOI] [PMC free article] [PubMed] [Google Scholar]
49.Wilde MH, Fairbanks E, Parshall R et al. A Web-Based Self-Management Intervention for Intermittent Catheter Users. Urologic nursing. 2015;35(3):127–133. 138. [PMC free article] [PubMed] [Google Scholar]
50.Wilde MH, McMahon JM, Fairbanks E et al. Feasibility of a web-based self-management intervention for intermittent urinary catheter users with spinal cord injury. J Wound Ostomy Continence Nurse. 2016;43(5):529–538. doi: 10.1097/WON.0000000000000256. [DOI] [PMC free article] [PubMed] [Google Scholar]
51.Lindsey LL, Klebine P. L. SCI health education multimedia series: Enhancing wellness with technology. SCI Nurs. 2001;18(1):37–38. [PubMed] [Google Scholar]
52.Perry KN, Nicholas MK, Middleton J. Multidisciplinary cognitive behavioural pain management programmes for people with a spinal cord injury: Design and implementation. Disabil Rehabil. 2011;33(13–14):1272–1280. doi: 10.3109/09638288.2010.524276. [DOI] [PubMed] [Google Scholar]
53.Kooijmans H, Post MW, van der Woude LH, de Groot S, Stam HJ, Bussmann JB. Randomized controlled trial of a self-management intervention in persons with spinal cord injury: Design of the HABITS (Healthy Active Behavioural Intervention in SCI) study. Disabil Rehabil. 2013;35(13):1111–1118. doi: 10.3109/09638288.2012.718406. [DOI] [PubMed] [Google Scholar]
54.Gilberg BN. The social worker's role in an interdisciplinary spinal cord education group. SCI Psychosocial Process. 1994;7(3):109–111. [Google Scholar]
55.Hilgart M, Ritterband L, Baxter K et al. Development and perceived utility and impact of a skin care Internet intervention. Internet Intervent. 2014;1(3):149–157. [Google Scholar]
56.Pollack SF, Zuger RR, Walsh J. Moving Out Services for Education and Support (MOSES): A model program for individuals with spinal cord injury. SCI Nurse. 1992;9(3):79–82. [PubMed] [Google Scholar]
57.Cardenas DD, Hoffman JM, Kelly E et al. Impact of a urinary tract infection educational program in persons with spinal cord injury. J Spinal Cord Med. 2004;27(1):47–54. doi: 10.1080/10790268.2004.11753730. [DOI] [PubMed] [Google Scholar]
58.Brace JA, Schubart JR. A prospective evaluation of a pressure ulcer prevention and management E-Learning Program for adults with spinal cord injury. Ostomy Wound Manage. 2010;56(8):40–50. [PubMed] [Google Scholar]
59.Captain C. The effects of communication skills training on interaction and psychosocial adjustment among couples living with spinal cord injury. Rehabil Nurs Res. 1995;4(4):111–118. [Google Scholar]
60.Perry KN, Nicholas MK, Middleton JW. Comparison of a pain management program with usual care in a pain management center for people with spinal cord injury-related chronic pain. Clin J Pain. 2010;26(3):206–216. doi: 10.1097/AJP.0b013e3181bff8f3. [DOI] [PubMed] [Google Scholar]
61.Lucke KT, Lucke JF, Martinez H. Evaluation of a professional + peer telephone intervention with spinal cord injured individuals following rehabilitation in South Texas. J Multicultural Nurs Health. 2004;10:68–74. [Google Scholar]
62.Heutink M, Post MW, Luthart P et al. Long-term outcomes of a multidisciplinary cognitive behavioural programme for coping with chronic neuropathic spinal cord injury pain. J Rehabil Med. 2014;46(6):540–545. doi: 10.2340/16501977-1798. [DOI] [PubMed] [Google Scholar]
63.Heutink M, Post MW, Bongers-Janssen HM et al. The CONECSI trial: Results of a randomized controlled trial of a multidisciplinary cognitive behavioral program for coping with chronic neuropathic pain after spinal cord injury. Pain. 2012;153(1):120–128. doi: 10.1016/j.pain.2011.09.029. [DOI] [PubMed] [Google Scholar]
64.Hagglund KJ, Clark MJ, Schopp LH, Sherman AK, Acuff ME. Consumer-assistant education to reduce the occurrence of urinary tract infections among persons with spinal cord injury. Top Spinal Cord Inj Rehabil. 2005;10(3):53–62. [Google Scholar]
65.Mills S, Burns AS, Delparte JJ et al. A comprehensive, multimodal, integrated approach to patient and family education following spinal cord injury (SCI) Top Spinal Cord Inj Rehabil. 2011;16:115. [Google Scholar]
66.Arbour-Nicitopoulos KP, Ginis KAM, Latimer AE. Planning, leisure-time physical activity, and coping self-efficacy in persons with spinal cord injury: A randomized controlled trial. Arch Phys Med Rehabil. 2009;90(12):2003–2011. doi: 10.1016/j.apmr.2009.06.019. [DOI] [PubMed] [Google Scholar]
67.Craig AR, Hancock K, Chang E, Dickson H. Immunizing against depression and anxiety after spinal cord injury. Arch Phys Med Rehabil. 1998;79(4):375–377. doi: 10.1016/s0003-9993(98)90136-8. [DOI] [PubMed] [Google Scholar]
68.Garber SL, Rintala DH, Ann Holmes S, Rodriguez GP, Friedman J. A structured educational model to improve pressure ulcer prevention knowledge in veterans with spinal cord dysfunction. J Rehabil Res Develop. 2002;39(5):575–587. [PubMed] [Google Scholar]
69.Brillhart B. Internet education for spinal cord injury patients: Focus on urinary management. Rehabil Nurse. 2007;32(5):214–219. doi: 10.1002/j.2048-7940.2007.tb00176.x. [DOI] [PubMed] [Google Scholar]
70.Foulon BL, Ginis KA. The effects of physical activity vignettes on physical activity-related social cognitions among people with spinal cord injury. Disabil Rehabil. 2013;35(24):2073–2080. doi: 10.3109/09638288.2013.800916. [DOI] [PubMed] [Google Scholar]
71.Chompoonimit A, Nualnetr N. The impact of task-oriented client-centered training on individuals with spinal cord injury in the community. Spinal Cord. 2016;54(10):849–854. doi: 10.1038/sc.2015.237. [DOI] [PubMed] [Google Scholar]
72.Schubart J. An e-learning program to prevent pressure ulcers in adults with spinal cord injury: A pre- and post- pilot test among rehabilitation patients following discharge to home. Ostomy Wound Manage. 2012;58(10):38–49. [PubMed] [Google Scholar]
73.Rubinelli S, Collm A, Glassel A et al. Designing interactivity on consumer health websites: PARAFORUM for spinal cord injury. Patient Educ Couns. 2013;93(3):459–463. doi: 10.1016/j.pec.2013.09.015. [DOI] [PubMed] [Google Scholar]
74.Hoffman J, Salzman C, Garbaccio C, Burns SP, Crane D, Bombardier C. Use of on-demand video to provide patient education on spinal cord injury. J Spinal Cord Med. 2011;34(4):404–409. doi: 10.1179/2045772311Y.0000000015. [DOI] [PMC free article] [PubMed] [Google Scholar]
75.Gassaway J, Jones ML, Sweatman WM, Hong M, Anziano P, DeVault K. Effects of peer mentoring on self-efficacy and hospital readmission after inpatient rehabilitation of individuals with spinal cord injury: A randomized controlled trial. Arch Phys Med Rehabil. 2017;98(8):1526–1534. e1522. doi: 10.1016/j.apmr.2017.02.018. [DOI] [PubMed] [Google Scholar]
76.Verwer JH, van Leeuwen CM, Bolier L, Post MW. Feasibility of an online well-being intervention for people with spinal cord injury: A pilot study. Spinal Cord. 2016;54(6):473–477. doi: 10.1038/sc.2015.165. [DOI] [PubMed] [Google Scholar]
77.Hirsche RC, Williams B, Jones A, Manns P. Chronic disease self-management for individuals with stroke, multiple sclerosis and spinal cord injury. Disabil Rehabil. 2011;33(13–14):1136–1146. doi: 10.3109/09638288.2010.523103. [DOI] [PubMed] [Google Scholar]
78.Libin A, Schladen M, Ljungberg I, Tsai B, Groah S. HTV phenomena: Youtube as a health literacy platform for persons with SCI. Top Spinal Cord Inj Rehabil. 2013;19(1):16. [Google Scholar]
79.Ljungberg I, Kroll T, Libin A, Gordon S. Using peer mentoring for people with spinal cord injury to enhance self-efficacy beliefs and prevent medical complications. J Clin Nurs. 2011;20(3–4):351–358. doi: 10.1111/j.1365-2702.2010.03432.x. [DOI] [PubMed] [Google Scholar]
80.Newman SD, Gillenwater G, Toatley S et al. A community-based participatory research approach to the development of a Peer Navigator health promotion intervention for people with spinal cord injury. Disabil Health J. 2014;7(4):478–484. doi: 10.1016/j.dhjo.2014.04.006. [DOI] [PMC free article] [PubMed] [Google Scholar]
81.Hughes RB, Robinson-Whelen S, Taylor HB, Hall JW. Stress self-management: An intervention for women with physical disabilities. Women's Health Issues. 2006;16(6):389–399. doi: 10.1016/j.whi.2006.08.003. [DOI] [PubMed] [Google Scholar]
82.Patterson RW, Bushnik T, Burdsall D, Wright J. Considerations of peer support for persons with high tetraplegia. Top Spinal Cord Inj Rehabil. 2005;10(3):30–37. [Google Scholar]
83.Houlihan BV, Brody M, Everhart-Skeels S et al. Randomized trial of a peer-led, telephone-based empowerment intervention for persons with chronic spinal cord injury improves health self-management. Arch Phys Med Rehabil. 2017;98(6):1067–1076. doi: 10.1016/j.apmr.2017.02.005. e1061. [DOI] [PubMed] [Google Scholar]
84.Mackelprang JL, Hoffman JM, Garbaccio C, Bombardier CH. Outcomes and lessons learned from a randomized controlled trial to reduce health care utilization during the first year after spinal cord injury rehabilitation: Telephone counseling versus usual care. Arch Phys Med Rehabil. 2016;97(10):1793–1796. e1791. doi: 10.1016/j.apmr.2016.03.002. [DOI] [PubMed] [Google Scholar]
85.Young JM, Lawrence W, Quick P. A unique role: the peer mentor on the spinal cord team at G.F. Strong Rehab Centre. Healthc Manage Forum. 1999;12(3):51–53. doi: 10.1016/S0840-4704(10)60719-3. [DOI] [PubMed] [Google Scholar]
86.Ljungberg I, Libin A, Groah S. Effect of a SCI Navigator on Pressure Ulcer Knowledge. Washington, DC: American Paraplegia Society; 2010. [Google Scholar]
87.Vines CL. Promoting community reentry: The TIRR PEERS program. SCI Psychosoc Process. 2000;13(4):185–187. [Google Scholar]
88.Hernandez B, Hayes EA, Balcazar FE, Keys CB. Responding to the needs of the underserved: A peer-mentor approach. SCI Psychosoc Process. 2001;14(3):142–149. [Google Scholar]
89.Klaas SJ, Flaum T. Facing disability: An internet-based approach to spinal cord injury education and peer support. Top Spinal Cord Inj Rehabi. 2013;19(1):56. [Google Scholar]
90.Guihan M, Bombardier CH, Ehde DM et al. Comparing multicomponent interventions to improve skin care behaviors and prevent recurrence in veterans hospitalized for severe pressure ulcers. Arch Phys Med Rehabil. 2014;95(7):1246–1253. doi: 10.1016/j.apmr.2014.01.012. e1243. [DOI] [PubMed] [Google Scholar]
91.Block P, Vanner EA, Keys CB, Rimmer JH, Skeels SE. Project Shake-It-Up: Using health promotion, capacity building and a disability studies framework to increase self efficacy. Disabil Rehabil. 2010;32(9):741–754. doi: 10.3109/09638280903295466. [DOI] [PubMed] [Google Scholar]
92.Sable JR, Gravink J. Project PATH (Promoting Access Transition and Health): A health promoting intervention for people with spinal cord injuries. Ann Therapeut Recreation. 1999;8:33–88. [Google Scholar]
93.Rose A, Piatt JA, Zahl M, Kim K. The effect of a self-efficacy based forum on life satisfaction for individuals with spinal cord injury or disease. Ann Therapeut Recreation. 2008;16:49–56. [Google Scholar]
94.Shepherd JD, Badger-Brown KM, Legassic MS, Walia S, Wolfe DL. SCI-U: e-Learning for patient education in spinal cord injury rehabilitation. J Spinal Cord Med. 2012;35(5):319–329. doi: 10.1179/2045772312Y.0000000044. [DOI] [PMC free article] [PubMed] [Google Scholar]
95.Jalovcic D, Pentland W. Accessing peers' and health care experts' wisdom: A telephone peer support program for women with SCI living in rural and remote areas. Top Spinal Cord Inj Rehabil. 2009;15(1):59–74. [Google Scholar]
96.Kolakowsky-Hayner SA, Wright J, Shem K, Medel R, Duong T. An effective community-based mentoring program for return to work and school after brain and spinal cord injury. NeuroRehabilitation. 2012;31(1):63–73. doi: 10.3233/NRE-2012-0775. [DOI] [PubMed] [Google Scholar]
97.Froehlich-Grobe K, White GW. Promoting physical activity among women with mobility impairments: A randomized controlled trial to assess a home- and community-based intervention. Arch Phys Med Rehabil. 2004;85:640–648. doi: 10.1016/j.apmr.2003.07.012. [DOI] [PubMed] [Google Scholar]
98.Price G, Lightbody S. A community living skills education programme within spinal cord injury rehabilitation. Australian Occup Ther J. 1994;41(1):37–40. [Google Scholar]
99.deJoie C. Using the internet as a treatment modality for individuals with SCI. J Spinal Cord Med. 2010;33(2):182–195. [Google Scholar]
100.Houlihan B, DeJoie C, Williams S. The Internet as a treatment modality: A model program for clients with SCI. OT Practice. 2007;12(19):10–14. [Google Scholar]
101.Burns AS, St-Germain D, Guindon A et al. Neurogenic bowel from the perspective of support providers to individuals with spinal cord injury (SCI) Top Spinal Cord Inj Rehabil. 2013;19(1):34. [Google Scholar]
102.Craig AR, Hancock K, Dickson H, Chang E. Long-term psychological outcomes in spinal cord injured persons: Results of a controlled trial using cognitive behavior therapy. Arch Phys Med Rehabil. 1997;78(1):33–38. doi: 10.1016/s0003-9993(97)90006-x. [DOI] [PubMed] [Google Scholar]
103.Zinman A, Digout N, Bain P, Haycock S, Hebert D, Hitzig SL. Evaluation of a community reintegration outpatient program service for community-dwelling persons with spinal cord injury. Rehabil Res Practice. 2014;2014 doi: 10.1155/2014/989025. 989025. [DOI] [PMC free article] [PubMed] [Google Scholar]
104.Nooijen CF, Stam HJ, Schoenmakers I et al. Working mechanisms of a behavioural intervention promoting physical activity in persons with subacute spinal cord injury. J Rehabil Med. 2016;48(7):583–588. doi: 10.2340/16501977-2110. [DOI] [PubMed] [Google Scholar]
105.Boschen KA, Burns A, Bain P et al. Results from an SCI-specific pain self-management project. Journal of Spinal Cord Medicine. 2010;33(2):182–195. [Google Scholar]
106.Radomski M, Finkelstein M, Hagel S, Masemer S, Theis J, Thompson M. A pilot wellness and weight management program for individuals with spinal cord injury: Participants' goals and outcomes. Top Spinal Cord Inj Rehabil. 2011;17(2):59–69. [Google Scholar]
107.Brawley LR, Arbour-Nicitopoulos KP, Martin Ginis KA. Developing physical activity interventions for adults with spinal cord injury. Part 3: A pilot feasibility study of an intervention to increase self-managed physical activity. Rehabil Psychol. 2013;58(3):316–321. doi: 10.1037/a0032814. [DOI] [PubMed] [Google Scholar]
108.Hughley E., Jr. Copology: A contemporary model useful for coping with the stress of spinal cord injury... this paper was presented at the 1993 Seventh Annual Conference of the American Association of Spinal Cord Injury Psychologists and Social Workers. SCI Psychosoc Process. 1994;7(3):112–116. [Google Scholar]
109.Latimer AE, Ginis KAM, Arbour KP. The efficacy of an implementation intention intervention for promoting physical activity among individuals with spinal cord injury: A randomized controlled trial. Rehabil Psychol. 2006;51(4):273–280. [Google Scholar]
110.Latimer-Cheung AE, Arbour-Nicitopoulos KP, Brawley LR et al. Developing physical activity interventions for adults with spinal cord injury. Part 2: Motivational counseling and peer-mediated interventions for people intending to be active. Rehabil Psychol. 2013;58(3):307–315. doi: 10.1037/a0032816. [DOI] [PubMed] [Google Scholar]
111.Tamplin J, Baker FA, Buttifant M, Berlowitz DJ. The effect of singing training on voice quality for people with quadriplegia. J Voice. 2014;28(1):128, e119–126. doi: 10.1016/j.jvoice.2013.08.017. [DOI] [PubMed] [Google Scholar]
112.Laskin JJ, James SA, Cantwell BM. A fitness and wellness program for people with spinal cord injury. Top Spinal Cord Inj Rehabil. 1997;3(1):16–33. [Google Scholar]
113.Meade MA, Reed KS, Krause JS. The impact of health behaviors and health management on employment after SCI: Physical health and functioning. Top Spinal Cord Inj Rehabil. 2016;22(1):39–48. doi: 10.1310/sci2201-39. [DOI] [PMC free article] [PubMed] [Google Scholar]
114.Nooijen CF, Stam HJ, Sluis T, Valent L, Twisk J, van den Berg-Emons RJ. A behavioral intervention promoting physical activity in people with subacute spinal cord injury: Secondary effects on health, social participation and quality of life. ClinRehabil. 2017;31(6):772–780. doi: 10.1177/0269215516657581. [DOI] [PubMed] [Google Scholar]
115.Salci LE, Perrier MJ, Ginis S, Martin Ginis KA. Active Living Leaders Training Program for adults with spinal cord injury: A pilot study. Spinal Cord. 2016;54(9):662–669. doi: 10.1038/sc.2015.168. [DOI] [PubMed] [Google Scholar]
116.Betts AC, Froehlich-Grobe K. Accessible weight loss: Adapting a lifestyle intervention for adults with impaired mobility. Disabil Health J. 2017;10(1):139–144. doi: 10.1016/j.dhjo.2016.06.004. [DOI] [PubMed] [Google Scholar]
117.Chen Y, Henson S, Jackson AB, Richards JS. Obesity intervention in persons with spinal cord injury. Spinal Cord. 2006;44:82–91. doi: 10.1038/sj.sc.3101818. [DOI] [PubMed] [Google Scholar]
118.Dorstyn D, Mathias J, Denson L, Robertson M. Effectiveness of telephone counseling in managing psychological outcomes after spinal cord injury: A preliminary study. Arch Phys Med Rehabil. 2012;93(11):2100–2108. doi: 10.1016/j.apmr.2012.06.002. [DOI] [PubMed] [Google Scholar]
119.Duchnick JJ, Letsch EA, Curtiss G. Coping effectiveness training during acute rehabilitation of spinal cord injury/dysfunction: A randomized clinical trial. Rehabil Psychol. 2009;54(2):123–132. doi: 10.1037/a0015571. [DOI] [PubMed] [Google Scholar]
120.King C, Kennedy P. Coping effectiveness training for people with spinal cord injury: Preliminary results of a controlled trial. Br J Clin Psychol. 1999;38(Pt 1):5–14. doi: 10.1348/014466599162629. [DOI] [PubMed] [Google Scholar]
121.Guest R, Craig A, Perry KN et al. Resilience following spinal cord injury: A prospective controlled study investigating the influence of the provision of group cognitive behavior therapy during inpatient rehabilitation. Rehabil Psychol. 2015;60(4):311–321. doi: 10.1037/rep0000052. [DOI] [PubMed] [Google Scholar]
122.Kennedy P. Coping Effectively With Spinal Cord Injuries: A Group Program: Workbook. New York: Oxford University Pres; 2009. [Google Scholar]
123.van der Woude LH, de Groot S, Postema K, Bussmann JB, Janssen TW, Post MW. Active LifestyLe Rehabilitation interventions in aging spinal cord injury (ALLRISC): A multicentre research program. Disabil Rehabil. 2013;35(13):1097–1103. doi: 10.3109/09638288.2012.718407. [DOI] [PubMed] [Google Scholar]
124.Liusuwan RA, Widman LM, Abresch RT et al. Behavioral intervention, exercise, and nutrition education to improve health and fitness (BENEfit) in adolescents with mobility impairment due to spinal cord dysfunction. J Spinal Cord Med. 2007;30:S119–126. doi: 10.1080/10790268.2007.11754615. [DOI] [PMC free article] [PubMed] [Google Scholar]
125.Kennedy P, Duff J, Evans M, Beedie A. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. Br J Clin Psychol. 2003;42(Pt 1):41–52. doi: 10.1348/014466503762842002. [DOI] [PubMed] [Google Scholar]
126.Migliorini C, Tonge B, Sinclair A. Developing and piloting ePACT: A flexible psychological treatment for depression in people living with chronic spinal cord injury. Behaviour Change. 2011;28(1):45–54. [Google Scholar]
127.Heenan CM, Piotrowski U. Creation of a client goal-setting framework. SCI Nurse. 2000;17(4):153–161. [PubMed] [Google Scholar]
128.Froehlich-Grobe K, Aaronson LS, Washburn RA et al. An exercise trial for wheelchair users: Project workout on wheels. Contemp Clin Trials. 2012;33(2):351–363. doi: 10.1016/j.cct.2011.10.014. [DOI] [PMC free article] [PubMed] [Google Scholar]
129.Byrnes M, Beilby J, Ray P, McLennan R, Ker J, Schug S. Patient-focused goal planning process and outcome after spinal cord injury rehabilitation: Quantitative and qualitative audit. Clin Rehabil. 2012;26(12):1141–1149. doi: 10.1177/0269215512442669. [DOI] [PubMed] [Google Scholar]
130.Norrbrink Budh C, Kowalski J, Lundeberg T. A comprehensive pain management programme comprising educational, cognitive and behavioural interventions for neuropathic pain following spinal cord injury. J Rehabil Med. 2006;38(3):172–180. doi: 10.1080/16501970500476258. [DOI] [PubMed] [Google Scholar]
131.Rintala DH, Garber SL, Friedman JD, Holmes SA. Preventing recurrent pressure ulcers in veterans with spinal cord injury: Impact of a structured education and follow-up intervention. Arch Phys Med Rehabil. 2008;89(8):1429–1441. doi: 10.1016/j.apmr.2008.01.015. [DOI] [PubMed] [Google Scholar]
132.Zahl ML, Compton DM, Kim K, Rosenbluth JP. SCI/D forum to increase active living: The effect of a self-efficacy and self-affirmation based SCI/D forum on active living in adults with spinal cord injury/disease. SCI Psychosoc Process. 2008;21(2):5–13. [Google Scholar]
133.Guy S, Kras-Dupuis A, Wolfe D. Implementation of a pressure ulcer prevention education best practice for persons with spinal cord injury. J Spinal Cord Med. 2014;37(5):617–618. [Google Scholar]
134.Block P, Skeels SE, Keys CB, Rimmer JH. Shake-It-Up: health promotion and capacity building for people with spinal cord injuries and related neurological disabilities. Disabil Rehabil. 2005;27(4):185–190. doi: 10.1080/09638280400019583. [DOI] [PubMed] [Google Scholar]
135.Kuemmel A, Seton JM, Washington M, Strozewski R, Tuck L. Spinal cord injury pain management: Telehealth group intervention approach. J Spinal Cord Med. 2013;36(5 Spec issue):516. [Google Scholar]
136.Delparte JJ, Chau BA, Mills S, Burns AS. Spinal cord essentials: The development of an individualized, handout-based patient and family education initiative for people with spinal cord injury. Spinal Cord. 2014;52(5):400–406. doi: 10.1038/sc.2014.22. [DOI] [PubMed] [Google Scholar]
137.Hilton G, Fraser R. Connecting and collaborating: The future of spinal cord injury information and education. Neurorehabil Neural Repair. 2012;26(6):673. [Google Scholar]
138.Zemper ED, Tate DG, Roller S et al. Assessment of a holistic wellness program for persons with spinal cord injury. Am J Phys Med Rehabil. 2003;82(12):957–968. doi: 10.1097/01.PHM.0000098504.78524.E2. quiz 969–971. [DOI] [PubMed] [Google Scholar]
139.Yasenchak PA, Bridle MJ. A low-literacy skin care manual for spinal cord injury patients. Patient Educ Couns. 1993;22(1):1–5. doi: 10.1016/0738-3991(93)90083-9. [DOI] [PubMed] [Google Scholar]
140.Kim JY, Cho E. Evaluation of a self-efficacy enhancement program to prevent pressure ulcers in patients with a spinal cord injury. Japan J Nurs Sci. 2017;14(1):76–86. doi: 10.1111/jjns.12136. [DOI] [PubMed] [Google Scholar]
141.Kooijmans H, Post MWM, Stam HJ et al. Effectiveness of a self-management intervention to promote an active lifestyle in persons with long-term spinal cord injury: The HABITS randomized clinical trial. Neurorehabil Neural Repair. 2017;31(12):991–1004. doi: 10.1177/1545968317736819. [DOI] [PubMed] [Google Scholar]
142.Wise HH, Jackson Thomas K, Nietert PJ, Brown DD, Sword DO, Diehl N. Home physical activity programs for the promotion of health and wellness in individuals with spinal cord injury. Top Spinal Cord Inj Rehabil. 2009;14(2):122–132. [Google Scholar]
143.Curcoll ML. Psychological approach to the rehabilitation of the spinal cord injured: the contribution of relaxation techniques. Paraplegia. 1992;30(6):425–427. doi: 10.1038/sc.1992.93. [DOI] [PubMed] [Google Scholar]
144.Meade MA, Wilson C. Issues of implementation and feasibility of an in-person, individually administered self-management intervention for adults with spinal cord injury. J Spinal Cord Med. 2013;36(5 Spec issue):514–515. [Google Scholar]
145.Pellerito JM., Jr. The effects of traditional and computer-aided instruction on promoting independent skin care in adults with paraplegia. Occup Ther Int. 2003;10(1):1–19. doi: 10.1002/oti.174. [DOI] [PubMed] [Google Scholar]
146.Houlihan BV, Jette A, Friedman RH et al. A pilot study of a telehealth intervention for persons with spinal cord dysfunction. Spinal Cord. 2013;51(9):715–720. doi: 10.1038/sc.2013.45. [DOI] [PubMed] [Google Scholar]
147.Houlihan BV, Jette A, Paasche-Orlow M et al. A telerehabilitation intervention for persons with spinal cord dysfunction. Am J Phys Med Rehabil. 2011;90(9):756–764. doi: 10.1097/PHM.0b013e31820b140f. [DOI] [PubMed] [Google Scholar]
148.Arbour-Nicitopoulos KP, Martin Ginis KA, Latimer-Cheung AE et al. Development of an evidence-informed leisure time physical activity resource for adults with spinal cord injury: The SCI Get Fit Toolkit. Spinal Cord. 2013;51(6):491–500. doi: 10.1038/sc.2013.7. [DOI] [PubMed] [Google Scholar]
149.Chen HY, Wu TJ, Lin CC. Improving self-perception and self-efficacy in patients with spinal cord injury: The efficacy of DVD-based instructions. J Clin Nurs. 2015;24(11–12):1666–1675. doi: 10.1111/jocn.12768. [DOI] [PubMed] [Google Scholar]

[i1082-0744-26-1-36-b150] Anzai K, Backwell A, Funk C, van Wyk K, Lawrence W, Jacobsen B, Townson A. Enhancing education delivery: an evaluation of the client education sessions and print materials in a spinal cord injury program. J Spinal Cord Med. 2012;35(5):420–421. [Google Scholar]

[i1082-0744-26-1-36-b151] Craig A, Hancock K. Difficulties in implementing group cognitive behaviour therapy for spinal cord injured persons: A clinical discussion. J Austral Psychol. 2007;29(2):98–102. [Google Scholar]

[i1082-0744-26-1-36-b152] Klebine P, Camp S, Roper JR, Dinoff BL, Lane C, Carter R. Using educational videos on secondary conditions to enhance healthcare practice. SCI Nurs. 2006;23(4):1. [Google Scholar]

[i1082-0744-26-1-36-b153] Klebine P, Roper JF, Camp S, Lane C, Dinoff BL, Sipski ML. Secondary conditions of spinal cord injury health education video series. SCI Nurs. 2007;24(2):3. [Google Scholar]

[i1082-0744-26-1-36-b154] Libin A, Ljungberg I, Groah S. Experiential learning approach to patient education: An SCI navigator study. Top Spinal Cord Inj Rehabil. 2013;19(1):55. [Google Scholar]

[i1082-0744-26-1-36-b155] Mackelprange RW. A holistic social work approach providing sexuality education counseling for persons with severe disabilities. In: Valentine DP, Mackelprange RW, editors. Sexuality and Disabilities: A Guide for Human Services Practitioners. New York: Routledge; 2013. [Google Scholar]

[i1082-0744-26-1-36-b156] Mathewson C, Adkins VK, Lenyoun MA, Schmidt AM, Jones ML. Using telemedicine in the treatment of pressure ulcers. Ostomy Wound Manage. 1999;45:58–62. [PubMed] [Google Scholar]

[i1082-0744-26-1-36-b157] Olinzock BJ, Elliott MH. Enhancing learning for patients with SCI: The rehabilitation learning readiness assessment guide. Spinal Cord Inj Nurs. 2008;25(2):39–40. [Google Scholar]

[i1082-0744-26-1-36-b158] Schladen MM, Libin A, Ljungberg I, Tsai B, Groah S. Toward literacy-neutral spinal cord injury information and training. Top Spinal Cord Inj Rehabil. 2011;16(3):70–83. [Google Scholar]

[i1082-0744-26-1-36-b159] Sheehy SB. A nurse-coached exercise program to increase muscle strength, improve quality of life, and increase self-efficacy in people with tetraplegic spinal cord injuries. J Neurosci Nurs. 2013;45(4):E3–12. doi: 10.1097/JNN.0b013e31829863e2. quiz E1–2. [DOI] [PubMed] [Google Scholar]

[i1082-0744-26-1-36-b160] Swaine J, Nguyen V, Romeo M, Vanwollingen B. The impact of integrating interface pressure mapping into structured pressure care self-management. Austral Occup Ther J. 2011;58:36–37. [Google Scholar]

[i1082-0744-26-1-36-b161] Vacco RK. Transitioning to adulthood with SCI: An intensive educational experience. J Spinal Cord Med. 2009;32(4):493. [Google Scholar]

[i1082-0744-26-1-36-b162] Van Biervliet A, Gest TR. A multimedia guide to spinal cord injury: empowerment through self instruction. Medinfo. 1995;8(Pt 2):1701. [PubMed] [Google Scholar]

[i1082-0744-26-1-36-b163] Williams S. The role of patient education in the rehabilitation of people with spinal cord injuries. Int J Ther Rehabil. 2008;15(4):174–179. [Google Scholar]

PERMALINK

A Scoping Review of Self-Management Interventions Following Spinal Cord Injury

Amanda McIntyre

Stephanie L Marrocco

Samantha A McRae

Lindsay Sleeth

Sander Hitzig

Susan Jaglal

Gary Linassi

Sarah Munce

Dalton L Wolfe

Abstract

Methods

Stage 1: Identifying the research question

Stage 2: Identifying relevant studies

Stage 3: Study selection

Stage 4: Charting the data

Stage 5: Collating, summarizing,and reporting the results

Results

Study selection

Figure 1.

Study and sample characteristics

Program characteristics

Table 1.

Table 2.

Barlow review

Figure 2.

PRISMS taxonomy

Figure 3.

Lorig taxonomy

Discussion

Acknowledgments

APPENDIX A

PubMed

EMBASE

MEDLINE

PsychInfo

CINAHL

APPENDIX B.

APPENDIX B.

APPENDIX C

Missing Full-Text Studies

APPENDIX D

Articles Included in the Study

REFERENCES

ACTIONS

PERMALINK

RESOURCES

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Links to NCBI Databases