Dataset Information

Investigating the Challenges and Benefits of Engaging in Peer Support via Videoconferencing for People with Spinal Cord Injury.

ABSTRACT:

Background

One of the greatest challenges faced by people following a spinal cord injury is reintegrating into the community. Peer mentors are people who have had shared experiences of disadvantage and distress and have successfully navigated their way through the associated challenges to lead meaningful lives. Historically, peer mentoring services have been predominantly delivered via face-to-face interactions. Little is known about the experience of people with spinal cord injury engaging in online peer support services, and what the challenges and benefits are of this mode of delivery.

Methods

An anonymous online survey consisting of closed and open response questions was used to collect data. Quantitative data were analysed descriptively and qualitative data were analysed using inductive content analysis.

Results

Positive benefits of engaging in peer support via videoconferencing included convenience and social connectedness. The main barriers were problems with Wi-Fi and internet connections, inconsistencies between platforms and having to learn new platforms. Even though responses were mixed when comparing videoconferencing to face-to-face peer support, most participants felt socially connected.

Conclusions

Addressing barriers through the provision of appropriate technology, and targeted and individualised assistance, is important to facilitate uptake of online peer support for people with spinal cord injury.

SUBMITTER: Barclay L

PROVIDER: S-EPMC9026552 | biostudies-literature | 2022 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Investigating the Challenges and Benefits of Engaging in Peer Support via Videoconferencing for People with Spinal Cord Injury.

Barclay Linda L Lalor Aislinn A

International journal of environmental research and public health 20220411 8

<h4>Background</h4>One of the greatest challenges faced by people following a spinal cord injury is reintegrating into the community. Peer mentors are people who have had shared experiences of disadvantage and distress and have successfully navigated their way through the associated challenges to lead meaningful lives. Historically, peer mentoring services have been predominantly delivered via face-to-face interactions. Little is known about the experience of people with spinal cord injury engag ...[more]

PMID: 35457452

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Project description:Study Design: Scoping review Objective: To study the design, clinical setting and outcome measures used in spinal cord injury rehabilitation publications. Methods: A literature search on PubMed and Medline was conducted focusing on articles published between 1990-2016 and using "traumatic SCI", "functional outcomes", "rehabilitation", "work" and "return to work" as outcomes. Studies were categorized based on design (intervention, including RCTs vs. non-intervention studies), settings (inpatient vs. outpatient vs. transition), and outcome measures used (impairment vs. function vs. participation/integration vs. quality of life vs. symptoms). Work-related studies were categorized independently. Results: Five hundred forty-four articles met the inclusion criteria. Of these, 234 were interventional studies, including 23 RCTs. Studies were evenly divided among inpatient, outpatient and transition settings. Of the 234 interventional studies, 143 used functional evaluations. Sixty-one different functional instruments were used, with a predominant use of the Functional Independence Measure (61 times) and an additional use of SCI-specific measures, i.e. Spinal Cord Independence Measure and Craig Handicap Assessment and Reporting Technique (13 times each). Fifty-one studies measured mobility, while only three measured hand functions. The work-related sub-analysis revealed 32 intervention studies (no RCTs), of which 15 used functional evaluations and only three focused on tetraplegia. Conclusion: Our study revealed a paucity of intervention trials and RCTs, indicating a dearth of knowledge that would be needed to establish evidence-based practice guidelines. This is particularly true for tetraplegia. While standard measures of function were frequently used, providing valuable data, there is no consensus about what exact outcome measure to use. Using newer measurement techniques, for instance based on the application of item response theory, should be considered to enhance uniformity.

Project description:BackgroundMobile health applications can offer tailored self-management support to individuals living with chronic health conditions. However, there are several challenges to the adoption of these technologies in practice. Co-design is a promising approach to overcoming some of these challenges by enabling the development of solutions that meet the actual needs and preferences of the relevant stakeholder groups.ObjectiveTaking spinal cord injury as a case in point, the overall objectives of this study were to identify the perceived benefits of a co-designed self-management app that could promote its uptake and to explore the factors that may impede adoption.MethodsWe adopted a qualitative research approach guided by the Technology Acceptance Model. Data were collected through semistructured interviews with individuals with spinal cord injury (n=15) and two focus groups with health care professionals specialized in spinal cord injury (n=7, n=5). Prior to the interviews and focus groups, study participants were given time to explore the app prototype. All interviews were transcribed verbatim and analyzed using inductive thematic analysis.ResultsFindings of our analysis indicate that study participants perceived the app prototype as potentially useful for supporting individuals with spinal cord injury in preventing pressure injuries. In particular, we identified three concrete use cases highlighting the benefits of the app for different audiences: (1) a companion for newly injured individuals, (2) an emergency kit and motivational support, and 3) a guide for informal caregivers and family members. We also uncovered several challenges that might impede the adoption of the self-management app in practice, including (1) challenges in motivating individuals to use the app, (2) concerns about the misuse and abuse of the app, and (3) organizational and maintenance challenges.ConclusionsThis study adds to a growing body of research that investigates individuals' adoption and nonadoption behavior regarding mobile health solutions. Building on earlier work, we make recommendations on how to address the barriers to the adoption of mobile health solutions identified by this study. In particular, there is a need to foster trust in mobile health among prospective users, including both patients and health care professionals. Moreover, increasing personal relevance of mobile health solutions through personalization may be a promising approach to promote uptake. Last but not least, organizational support also plays an instrumental role in mobile health adoption. We conclude that even though co-design is promoted as a promising approach to develop self-management tools, co-design does not guarantee adoption. More research is needed to identify the most promising strategies to promote the adoption of evidence-based mobile health solutions in practice.

Project description:BackgroundGeographical, financial and travel-related barriers may impact access to necessary health care for people in need of long-term follow-up.ObjectiveThe goal of the research was to perform a nonblinded, randomized, controlled trial on health-related quality of life (HRQoL), healing, interaction, and satisfaction of patients with spinal cord injury (SCI) and PI receiving multidisciplinary videoconference consultations from a wound clinic to the participant's home versus regular outpatient care. The multidisciplinary team consisted of a medical doctor, a wound nurse, and an occupational therapist. In both groups, district nurses attended the consultations at the participant's home.MethodsA total of 56 participants, 28 in each group, were randomized to a videoconference group (VCG) or a regular care group (RCG). Validated questionnaires were used to measure and compare the follow-up effect on HRQoL. Percentage reduction of wound volume was measured at end of the follow-up. A Likert scale was used to measure the satisfaction of the patients and district nurses regarding the interaction between different modalities of care in the 2 groups.ResultsThe HRQoL did not show significant differences between the 2 groups (P values ranging from .09 to .88) or the rate of PI healing, experienced interaction, and satisfaction in the groups. A total of 67% (37/55) of all PIs healed, 64% (18/28) in the VCG and 70% (19/27) in the RCG. Mean reduction in ulcer volume was 79% in the VCG and 85% in the RCG (P=.32). A Kaplan-Meier plot with a logrank test regarding time to healing did not show any significant difference between the 2 groups.ConclusionsVideoconference-based care seems to be a safe and efficient way to manage PIs in terms of HRQoL, healing, interaction, and satisfaction compared to conventional care for people with SCI. This should be considered when planning for future care. SCI has a huge impact on the individual, the family, and the health care system. There is an urgent need to improve systems of care so that individuals who live far from specialists and require long-term follow-up for conditions such as PI can get optimal treatment.Trial registrationClinicalTrials.gov NCT02800915; https://clinicaltrials.gov/ct2/show/NCT02800915 and Current Research Information System in Norway (CRISTIN) 545284; https://app.cristin.no/projects/show.jsf?id=545284.

Project description:BackgroundThe diagnosis and treatment of a brain or spinal cord tumour can have a huge impact on the lives of patients and their families with family caregiving often resulting in considerable burden and distress. Meeting the support needs of family caregivers is critical to maintain their emotional and physical health. Although support for caregivers is becoming more widely available, large-scale implementation is hindered by a lack of high-quality evidence for its effectiveness in the neuro-oncology caregiver population.ObjectivesTo assess the effectiveness of supportive interventions at improving the well-being of caregivers of people with a brain or spinal cord tumour. To assess the effects of supportive interventions for caregivers in improving the physical and emotional well-being of people with a brain or spinal cord tumour and to evaluate the health economic benefits of supportive interventions for caregivers.Search methodsWe searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 7), MEDLINE via Ovid, and Embase via Ovid. We also handsearched relevant published conference abstracts (previous five years), publications in the two main journals in the field (previous year), searched for ongoing trials via ClinicalTrials.gov, and contacted research groups in the field. The initial search was in March 2017 with an update in August 2018 (handsearches completed in January 2019).Selection criteriaWe included all randomised controlled trials (RCTs) where caregivers of neuro-oncology patients constituted more than 20% of the sample and which evaluated changes in caregiver well-being following any supportive intervention.Data collection and analysisTwo review authors independently selected studies and carried out risk of bias assessments. We aimed to extract data on the outcomes of psychological distress, burden, mastery, quality of patient-caregiver relationship, quality of life, and physical functioning.Main resultsIn total, the search identified 2102 records, of which we reviewed 144 in full text. We included eight studies. Four interventions focused on patient-caregiver dyads and four were aimed specifically at the caregiver. Heterogeneity of populations and methodologies precluded meta-analysis. Risk of bias varied, and all studies included only small numbers of neuro-oncology caregivers (13 to 56 participants). There was some evidence for positive effects of caregiver support on psychological distress, mastery, and quality of life (low to very low certainty of evidence). No studies reported significant effects on caregiver burden or quality of patient-caregiver relationship (low to very low certainty of evidence). None of the studies assessed caregiver physical functioning. For secondary outcomes (patient emotional or physical well-being; health economic effects), we found very little to no evidence for the effectiveness of caregiver support. We identified five ongoing trials.Authors' conclusionsThe eight small-scale studies included employed different methodologies across different populations, with low certainty of evidence overall. It is not currently possible to draw reliable conclusions regarding the effectiveness of supportive interventions aimed at improving neuro-oncology caregiver well-being. More high-quality research is needed on support for family caregivers of people diagnosed, and living, with a brain or spinal cord tumour.

Dataset Information

Investigating the Challenges and Benefits of Engaging in Peer Support via Videoconferencing for People with Spinal Cord Injury.

Background

Methods

Results

Conclusions

Publications

Investigating the Challenges and Benefits of Engaging in Peer Support via Videoconferencing for People with Spinal Cord Injury.

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