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BackgroundSpinal cord injury is a complex chronic health condition that requires individuals to actively self-manage. Therefore, an evidence-based, self-management app would be of value to support individuals with spinal cord injury in the prevention of pressure injuries. ObjectiveThe main objectives of this study were to (1) establish a co-design approach for developing a high-fidelity prototype app for the self-management of individuals with spinal cord injury, (2) design the prototype that resulted from this process, and (3) conduct the first usability assessment of the prototype app. MethodsWe adopted a co-design approach to develop an evidence-based app prototype. Starting from a preliminary content model (based on clinical guidelines for the prevention of pressure injuries) and three research-based user personas, we conducted an ideation workshop involving individuals with spinal cord injury and health care professionals. The ideation workshop formed the basis for two consecutive design sprints. The result of this co-design phase was an interactive app prototype. The prototype was evaluated in two rounds of usability testing (N=4 and N=15, respectively) using a combination of qualitative and quantitative methods. ResultsThe co-design process resulted in a high-fidelity prototype with two key components: a self-management component and a communication component. The final prototype included a combination of features to support individuals with spinal cord injury in the prevention of pressure injuries, namely a smart camera, pressure injury diary, expert consultation, reminders, and knowledge repository. Findings of the usability testing showed that most participants navigated the app fluently with little back and forth navigation and were able to successfully complete a set of assigned tasks. These positive results are supported by the average system usability score achieved (78.5/100; range 47.5-95.0) and our qualitative analysis of the semistructured interviews. Despite an overall positive evaluation of the app prototype, we identified areas for improvement (eg, inclusion of a search function). ConclusionsIndividuals with spinal cord injury often need to navigate competing interests and priorities, paired with uncertainty about the accuracy and relevance of clinical recommendations. Understanding what matters to individuals with spinal cord injury can help guide the design of behavioral interventions that are useful and acceptable to these individuals in their daily lives. This study shows that involving individuals with spinal cord injury and health care professionals in co-designing a self-management app can foster knowledge cocreation at the intersection of lived experience, medical expertise, and technical solutions.

BackgroundTechnological 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. ObjectiveThe 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. MethodsTo 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. ResultsIn 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. ConclusionsThis 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.

Background: Spinal cord injury imposes high demands on family caregivers providing long-term care. Professional home care has been suggested for family caregivers' relief. However, it is not clear whether professional home care can achieve the goal of relieving family caregivers., Objective: To quantify to what extent professional home care was used as a relief or replacement for family caregivers, using the case of care for persons with spinal cord injury in Switzerland., Design: Cross-sectional survey., Setting: Community setting in Switzerland., Participants: 717 family caregivers of persons with spinal cord injury living at home., Methods: Linear regression analyses were applied to investigate the relationship between care hours by family caregivers and the use of professional home care. Percentages of family caregivers that assisted in different tasks, and their time investment in the tasks, were contrasted between those with and without professional home care. Multiple logistic regression compared the likelihood of specific tasks being assisted by family caregivers dependent on whether professional home care was in place. The reasons given for not hiring more professional home care despite unmet needs were described with relative frequencies., Results: Adjusted for non-utilization, care hours of family caregivers had a positive, but insignificant, relationship with the hours of professional home care (Coef. = 0.21, 95% CI: -0.05-0.47). Assistance in activities of daily living was more frequent in family caregivers with professional home care. Eating and drinking assistance was provided by 47% of family caregivers with professional home care (versus 18% of those without professional home care). The most frequent task in instrumental activities of daily living was housekeeping (88% of family caregivers with professional home care and 83% of those without professional home care). After adjusting for characteristics of the caregivers and care recipients, significantly lower odds of assistance were found in washing feet (OR 0.39, 95% CI: 0.22-0.71), transferring to the toilet or bathtub (OR 0.53, 95% CI: 0.29-0.96), and climbing stairs (OR 0.26, 95% CI: 0.09-0.69). Higher odds of assistance were found in respiratory care (OR 2.22, 95% CI: 1.04-4.74) and bladder management (OR 1.99, 95% CI: 1.05-3.76) with professional home care in place. No significant difference was found in other tasks., Conclusion: Professional home care is a strong support to caregivers in high care demand situations, but it is not a replacement. The present study recommends further relief, empowerment, and acknowledgement for family caregivers. What is already known about the topic? • Evidence has shown that family caregivers replace paid domestic help or postpone the use of professional home care in the elderly population.• The large involvement translates into highly stressed family caregivers, for whom professional home care could serve as a relief.• Family caregivers reported low utilization of professional home care and some frustration with its use. What this paper adds • Family caregivers' time investment and involvement in tasks were adjusted based on the care demand of the care recipients.• Despite the presence of professional home care, family caregivers still invested a considerable amount of time and were heavily involved in activities of daily living.• Professional home care provided strong support for family caregivers in instances of higher care demand., Competing Interests: All authors were salaried by organizations financially compensated by the Swiss Paraplegic Foundation., (© 2020 The Authors. Published by Elsevier Ltd.)

Aims of the Study: The effective management of spinal cord injury (SCI) requires partnership between people with SCI and health professionals (HPs). This paper identifies HPs’ perceived challenges in building and maintaining this partnership, with a specific focus on how people with SCI and HPs collaborate in the prevention and treatment of pressure injuries (PIs) in SCI., Design: This study has a qualitative and explorative design. Data were collected through semi-structured interviews and analysed following the principles of thematic analysis., Population and Setting: The study population consisted of a purposive sample of HPs (n = 26) working in inpatient and outpatient care in Switzerland with experience in the care of people with SCI., Results: The analysis identified three main challenges: defining responsibilities and expectations, negotiating priorities and establishing and strengthening trust and respect. The HPs argue that the prevention of PIs and self-management are mainly the responsibility of the person with SCI. The HPs have, however, the responsibility to empower, guide, and support persons with SCI in self-management by educating and motivating them., Conclusion: Building and maintaining a partnership with individuals with SCI to prevent and treat PIs is crucial, but it is not an easy task for HPs. Specific communication skills can help HPs and patients find personalised solutions that take into account the patients’ expertise and preferences. Additionally, the healthcare system must develop solutions that go beyond personal partnership to better integrate the prevention and treatment of PIs into the lifelong self-management of SCI. Assistive technologies, such as mobile technology, might help in this endeavour.