Self-management, self-efficacy, and secondary health conditions in people with spinal cord injury

BACKGROUND Most people with spinal cord injury will develop secondary complications with potentially devastating consequences. Self-management is a key prevention strategy for averting the development of secondary complications and their recurrence. Several studies have shown that self-management programs improve self-management behaviors and health outcomes in individuals living with chronic conditions such as asthma, diabetes, hypertension, and arthritis. Given the burgeoning health care costs related to secondary complications, we developed an alternative electronic health–based implementation to facilitate the development of self-management skills among people with spinal cord injury. OBJECTIVE This study aims to evaluate the efficacy of a self-management app in spinal cord injury populations. The primary outcome is attainment of self-selected, self-management goals. Secondary outcomes include increases in general and self-management self-efficacy and reductions in self-reported health events, health care utilization, and secondary complications related to spinal cord injury. This study also aims to explore how the intervention was implemented and how the app was experienced by end users. METHODS This study will employ a mix of qualitative and quantitative methods. The quantitative portion of our study will involve a rater-blinded, randomized controlled trial with a stepped wedge design (ie, delayed intervention control group). The primary outcome is successful goal attainment, and secondary outcomes include increases in self-efficacy and reductions in self-reported health events, health care utilization, and secondary conditions related to spinal cord injury. The qualitative portion will consist of semistructured interviews with a subsample of the participants. RESULTS We expect that the mobile self-management app will help people with spinal cord injury to attain their self-management goals, improve their self-efficacy, reduce secondary complications, and decrease health care utilization. CONCLUSIONS If the results are positive, this study will produce credible new knowledge describing multiple outcomes that people with spinal cord injury realize from an app-based self-management intervention and support its implementation in clinical practice. CLINICALTRIAL ClinicalTrials.gov NCT03140501; http://clinicaltrials.gov/ct2/show/NCT03140501 (Archived by WebCite at http://www.webcitation.org/73Gw0ZlWZ) INTERNATIONAL REGISTERED REPOR PRR1-10.2196/11069

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Associations Between Self-Efficacy and Secondary Health Conditions in People Living With Spinal Cord Injury: A Systematic Review and Meta-Analysis

Archives of Physical Medicine and Rehabilitation ◽

10.1016/j.apmr.2017.03.024 ◽

2017 ◽

Vol 98 (12) ◽

pp. 2566-2577 ◽

Cited By ~ 12

Author(s):

Tijn van Diemen ◽

Tim Crul ◽

Ilse van Nes ◽

Jan H. Geertzen ◽

Marcel W. Post

Keyword(s):

Systematic Review ◽

Spinal Cord ◽

Spinal Cord Injury ◽

Self Efficacy ◽

Meta Analysis ◽

Health Conditions ◽

Cord Injury

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Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation (Preprint)

10.2196/preprints.16351 ◽

2019 ◽

Author(s):

Sonya Allin ◽

John Shepherd ◽

Teri Thorson ◽

Jennifer Tomasone ◽

Sarah Munce ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Mixed Methods ◽

Self Efficacy ◽

Management Program ◽

Self Management ◽

Web Based ◽

Secondary Conditions ◽

Cord Injury ◽

Before And After

BACKGROUND Individuals with spinal cord injury (SCI) are at high risk of experiencing secondary conditions like pressure injuries. Self-management programs may reduce the risk of complications, but traditional programs have proven to be insufficiently tailored to the needs of people with SCI. To overcome barriers to self-management support, a web-based, self-management program was developed for Canadians with SCI called <i>SCI & U</i>. OBJECTIVE This study aims to evaluate the feasibility and potential impact of the <i>SCI & U</i> program in the context of a mixed methods pilot study. METHODS The study followed an explanatory, sequential mixed methods design. Participants (N=11) were Canadians with SCI who had been living in the community for more than 1 year. Each took part in a self-paced, six-session self-management program guided by a trained peer health coach. During sessions, participants could discuss a health topic with their coach from a predefined list (eg, skin or bowel management). Quantitative data were gathered before and after program participation to assess program feasibility and impact. Feasibility measures included attrition rates, frequency of topics selected, and recorded goals, whereas impact measures included measures of self-efficacy (University of Washington Self-Efficacy Scale [UW-SES]), mood (Personal Health Questionnaire Depression Scale [PHQ-8]), secondary conditions (Spinal Cord Injury Secondary Conditions Scale [SCI-SCS]), and resilience (Spinal Cord Injury Quality of Life Resilience Scale [SCI-QOL-R]). Qualitative measures were based on postintervention interviews; these were designed to confirm and expand on quantitative RESULTS Of the 11 participants, 10 completed pre- and postassessments, and 6 coaching sessions. Sessions lasted between 31 and 81 min (average 55, SD 13), and the duration of the program ranged from 35 to 88 days (average 56, SD 23). Diet and exercise were selected as topics 40% (20/50 sessions with topics) of the time, whereas topics such as mental health, bladder management, pain, and bowel management were chosen less frequently. Results gathered before and after the pilot study demonstrated improvements with moderate effect sizes on the UW-SES and the electronic health literacy scale (ie, Hedges g>0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g>0.3). Qualitative results confirmed a common focus on diet and exercise, and defined coaches as sources of accountability, information, reassurance and affirmation, and emotional and technical support. CONCLUSIONS Results demonstrated that a web-based self-management program is feasible and acceptable by Canadians with SCI. Results also indicated a web-based, peer-led self-management program may impact resilience, self-efficacy, mood, and secondary complications. Finally, results illuminated the role of the coach in facilitating behavior change. Future work seeks to validate results in the context of a randomized controlled trial.

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Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation

JMIR Rehabilitation and Assistive Technologies ◽

10.2196/16351 ◽

2020 ◽

Vol 7 (2) ◽

pp. e16351

Author(s):

Sonya Allin ◽

John Shepherd ◽

Teri Thorson ◽

Jennifer Tomasone ◽

Sarah Munce ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Mixed Methods ◽

Self Efficacy ◽

Management Program ◽

Self Management ◽

Web Based ◽

Secondary Conditions ◽

Cord Injury ◽

Before And After

Background Individuals with spinal cord injury (SCI) are at high risk of experiencing secondary conditions like pressure injuries. Self-management programs may reduce the risk of complications, but traditional programs have proven to be insufficiently tailored to the needs of people with SCI. To overcome barriers to self-management support, a web-based, self-management program was developed for Canadians with SCI called SCI & U. Objective This study aims to evaluate the feasibility and potential impact of the SCI & U program in the context of a mixed methods pilot study. Methods The study followed an explanatory, sequential mixed methods design. Participants (N=11) were Canadians with SCI who had been living in the community for more than 1 year. Each took part in a self-paced, six-session self-management program guided by a trained peer health coach. During sessions, participants could discuss a health topic with their coach from a predefined list (eg, skin or bowel management). Quantitative data were gathered before and after program participation to assess program feasibility and impact. Feasibility measures included attrition rates, frequency of topics selected, and recorded goals, whereas impact measures included measures of self-efficacy (University of Washington Self-Efficacy Scale [UW-SES]), mood (Personal Health Questionnaire Depression Scale [PHQ-8]), secondary conditions (Spinal Cord Injury Secondary Conditions Scale [SCI-SCS]), and resilience (Spinal Cord Injury Quality of Life Resilience Scale [SCI-QOL-R]). Qualitative measures were based on postintervention interviews; these were designed to confirm and expand on quantitative Results Of the 11 participants, 10 completed pre- and postassessments, and 6 coaching sessions. Sessions lasted between 31 and 81 min (average 55, SD 13), and the duration of the program ranged from 35 to 88 days (average 56, SD 23). Diet and exercise were selected as topics 40% (20/50 sessions with topics) of the time, whereas topics such as mental health, bladder management, pain, and bowel management were chosen less frequently. Results gathered before and after the pilot study demonstrated improvements with moderate effect sizes on the UW-SES and the electronic health literacy scale (ie, Hedges g>0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g>0.3). Qualitative results confirmed a common focus on diet and exercise, and defined coaches as sources of accountability, information, reassurance and affirmation, and emotional and technical support. Conclusions Results demonstrated that a web-based self-management program is feasible and acceptable by Canadians with SCI. Results also indicated a web-based, peer-led self-management program may impact resilience, self-efficacy, mood, and secondary complications. Finally, results illuminated the role of the coach in facilitating behavior change. Future work seeks to validate results in the context of a randomized controlled trial.

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Selecting Evidence-Based Content for Inclusion in Self-Management Apps for Pressure Injuries in Individuals With Spinal Cord Injury: Participatory Design Study (Preprint)

10.2196/preprints.15818 ◽

2019 ◽

Cited By ~ 1

Author(s):

Maddalena Fiordelli ◽

Claudia Zanini ◽

Julia Amann ◽

Anke Scheel-Sailer ◽

Mirjam Brach ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Community Dwelling ◽

Chronic Health Conditions ◽

Health Conditions ◽

Self Management ◽

Evidence Based ◽

Chronic Health ◽

Cord Injury ◽

Selection Of

BACKGROUND Technological solutions, particularly mobile health (mHealth), have been shown to be potentially viable approaches for sustaining individuals’ self-management of chronic health conditions. Theory-based interventions are more successful, as evidence-based information is an essential prerequisite for appropriate self-management. However, several reviews have shown that many existing mobile apps fail to be either theoretically grounded or based on evidence. Although some authors have attempted to address these two issues by focusing on the design and development processes of apps, concrete efforts to systematically select evidence-based content are scant. OBJECTIVE The objective of this study was to present a procedure for the participatory identification of evidence-based content to ground the development of a self-management app. METHODS To illustrate the procedure, we focused on the prevention and management of pressure injuries (PIs) in individuals with spinal cord injury (SCI). The procedure involves the following three steps: (1) identification of existing evidence through review and synthesis of existing recommendations on the prevention and self-management of PIs in SCI; (2) a consensus meeting with experts from the field of SCI and individuals with SCI to select the recommendations that are relevant and applicable to community-dwelling individuals in their daily lives; and (3) consolidation of the results of the study. RESULTS In this case study, at the end of the three-step procedure, the content for an mHealth intervention was selected in the form of 98 recommendations. CONCLUSIONS This study describes a procedure for the participatory identification and selection of disease-specific evidence and professional best practices to inform self-management interventions. This procedure might be especially useful in cases of complex chronic health conditions, as every recommendation in these cases needs to be evaluated and considered in light of all other self-management requirements. Hence, the agreement of experts and affected individuals is essential to ensure the selection of evidence-based content that is considered to be relevant and applicable.

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Selecting Evidence-Based Content for Inclusion in Self-Management Apps for Pressure Injuries in Individuals With Spinal Cord Injury: Participatory Design Study

JMIR mhealth and uhealth ◽

10.2196/15818 ◽

2020 ◽

Vol 8 (5) ◽

pp. e15818 ◽

Cited By ~ 3

Author(s):

Maddalena Fiordelli ◽

Claudia Zanini ◽

Julia Amann ◽

Anke Scheel-Sailer ◽

Mirjam Brach ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Community Dwelling ◽

Chronic Health Conditions ◽

Health Conditions ◽

Self Management ◽

Evidence Based ◽

Chronic Health ◽

Cord Injury ◽

Selection Of

Background Technological solutions, particularly mobile health (mHealth), have been shown to be potentially viable approaches for sustaining individuals’ self-management of chronic health conditions. Theory-based interventions are more successful, as evidence-based information is an essential prerequisite for appropriate self-management. However, several reviews have shown that many existing mobile apps fail to be either theoretically grounded or based on evidence. Although some authors have attempted to address these two issues by focusing on the design and development processes of apps, concrete efforts to systematically select evidence-based content are scant. Objective The objective of this study was to present a procedure for the participatory identification of evidence-based content to ground the development of a self-management app. Methods To illustrate the procedure, we focused on the prevention and management of pressure injuries (PIs) in individuals with spinal cord injury (SCI). The procedure involves the following three steps: (1) identification of existing evidence through review and synthesis of existing recommendations on the prevention and self-management of PIs in SCI; (2) a consensus meeting with experts from the field of SCI and individuals with SCI to select the recommendations that are relevant and applicable to community-dwelling individuals in their daily lives; and (3) consolidation of the results of the study. Results In this case study, at the end of the three-step procedure, the content for an mHealth intervention was selected in the form of 98 recommendations. Conclusions This study describes a procedure for the participatory identification and selection of disease-specific evidence and professional best practices to inform self-management interventions. This procedure might be especially useful in cases of complex chronic health conditions, as every recommendation in these cases needs to be evaluated and considered in light of all other self-management requirements. Hence, the agreement of experts and affected individuals is essential to ensure the selection of evidence-based content that is considered to be relevant and applicable.

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Pathways to loneliness: a mediation analysis investigating the social gradient of loneliness in persons with disabilities in Switzerland

International Journal for Equity in Health ◽

10.1186/s12939-021-01600-5 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Hannah Tough ◽

Mirja Gross-Hemmi ◽

Inge Eriks-Hoogland ◽

Christine Fekete

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Socioeconomic Status ◽

Low Socioeconomic Status ◽

Mediation Analysis ◽

Self Efficacy ◽

Health Conditions ◽

Psychosocial Resources ◽

Low Socioeconomic ◽

Cord Injury

Abstract Background The experience of loneliness can have drastic consequences for health and quality of life. Given that loneliness is highly prevalent in persons with physical disabilities and that loneliness more profoundly affects persons of low socioeconomic status, more evidence is required in order to understand the mechanisms determining loneliness in this population. The objective of this study is therefore to investigate the potential pathways through which socioeconomic status influences loneliness in persons with spinal cord injury. Methods Mediation analysis utilising structural equation models and bias corrected and accelerated confidence intervals were used in order to test the mediation effects of health status, functioning, participation, social support and self-efficacy on the association between socioeconomic status and loneliness in persons with spinal cord injury. A latent construct was created for socioeconomic status with the indicators education, household income, financial hardship, subjective social status and engagement in paid work. Results This study found evidence to support the mediating role of psychosocial resources and of secondary health conditions in the association between socioeconomic status and loneliness. The study demonstrated robust associations between socioeconomic status and all potential mediators, whereby higher socioeconomic status was associated with better health, participation and psychosocial resources, however, not all potential mediators were associated with loneliness. The serial mediation model explained the interplay between socioeconomic status, mediators on different levels, and loneliness. For example, emotional support and self-efficacy were both positively associated with fewer restrictions to participation (0.08 (CI: 0.05, 0.12); 0.29 (CI: 0.24, 0.36) respectively), and fewer restrictions to participation were found to be a result of improved functional independence and fewer secondary health conditions (0.23 (CI: 0.15, 0.39); − 0.29 (CI: − 0.36, − 0.20) respectively). Conclusions Our findings highlight the vulnerability of persons with low socioeconomic status to loneliness in persons with spinal cord injury and identified potential mediating factors, such as health, functioning, participation and psychosocial resources, in the association between socioeconomic status and loneliness. This population-based evidence suggests potential targets of interventions on the pathway to loneliness, through which socioeconomic status influences loneliness. The complexity of the model shows the need for comprehensive interprofessional rehabilitation to identify and support people with lower socioeconomic status and concomitant risk factors for loneliness.

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Pain and its impact on functioning and disability in manual wheelchair users with spinal cord injury: a protocol for a mixed-methods study

BMJ Open ◽

10.1136/bmjopen-2020-044152 ◽

2021 ◽

Vol 11 (1) ◽

pp. e044152

Author(s):

Mokgadi Kholofelo Mashola ◽

Elzette Korkie ◽

Diphale Joyce Mothabeng

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

South African ◽

Phase 1 ◽

Pain Medication ◽

Self Management ◽

Medication Misuse ◽

Wheelchair Users ◽

Manual Wheelchair ◽

Cord Injury

IntroductionApproximately 80% of people with spinal cord injury experience clinically significant chronic pain. Pain (whether musculoskeletal or neuropathic) is consistently rated as one of the most difficult problems to manage and negatively affects the individual’s physical, psychological and social functioning and increases the risk of pain medication misuse and poor mental health. The aim of this study is to therefore determine the presence of pain and its impact on functioning and disability as well as to develop a framework for self-management of pain for South African manual wheelchair users with spinal cord injury.Methods and analysisCommunity-dwelling participants with spinal cord injury will be invited to participate in this three-phase study. Phase 1 will use a quantitative, correlational design to determine factors related to pain such as pectoralis minor length, scapular dyskinesis, wheelchair functioning, physical quality of life, community reintegration and pain medication misuse. Demographic determinants of pain such as age, gender, type of occupation, completeness of injury and neurological level of injury will also be investigated. Participants with pain identified in phase 1 will be invited to partake in a qualitative descriptive and contextually designed phase 2 to explore their lived experience of pain through in-depth interviews. The results of phases 1 and 2 will then be used with the assistance from experts to develop a framework for self-management of pain using a modified Delphi study. Data analysis will include descriptive and inferential statistics (quantitative data) and thematic content analysis (qualitative data).Ethics and disseminationApproval for this study is granted by the Faculty of Health Sciences Research Ethics Committee of the University of the Pretoria (approval number 125/2018). This study is registered with the South African National Health Research Database (reference GP201806005). This study’s findings will be shared in academic conferences and published in scientific peer-reviewed journals.

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