Surveying persons with disabilities is challenging, as targeted subjects may experience specific barriers to survey participation. Here we report on participation rates and response behaviour in a community survey of people with spinal cord injury (SCI) in Switzerland. The cross-sectional survey was implemented as part of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) and represents the largest population-based SCI survey in Europe including nearly 2000 persons. Design features to enhance participation rates included the division of the questionnaire volume over three successive modules; recurrent and mixed-mode reminding of non-responders; and mixed-mode options for response. We describe participation rates of the SwiSCI community survey (absolute and cumulative cooperation, contact, response, and attrition rates) and report on response rates in relation to recruitment efforts. Potential non-response bias and the association between responders’ characteristics and response behaviour (response speed: reminding until participation; response mode: paper-pencil vs. online completion) were assessed using regression modelling. Over the successive modules, absolute response rates were 61.1, 80.6 and 87.3 % which resulted in cumulative response rates of 49.3 and 42.6 % for the second and third modules. Written reminders effectively increased response rates, with the first reminder showing the largest impact. Telephone reminders, partly with direct telephone interviewing, enhanced response rate to the first module, but were essentially redundant in subsequent modules. Non-response to the main module was related to current age, membership of Swiss Paraplegic Association (SPA) and time since injury, but not to gender, lesion level and preferred language of response. Response speed increased with household income, but was not associated to other sociodemographic factors, lesion characteristics or health indicators. We found significant associations between online completion and male gender, younger age, higher education, higher income, SPA membership, tetraplegia, longer time since injury, higher quality of life, and more participation restrictions. In this sample with little non-response bias, recurrent and mixed-mode reminding and mixed-mode options for response were key features of optimizing survey design.

Objective: To identify barriers to access healthcare services and reveal determinants of satisfaction with healthcare services in people with chronic spinal cord injury (SCI). Design: Cross-sectional survey. Setting: Community setting in Switzerland. Participants: People with chronic SCI. Interventions: Non-applicable. Outcome Measures: Questionnaire-based evaluation of availability and quality of healthcare services for secondary health conditions, satisfaction with fulfillment of healthcare needs, and preference for care from a hypothetical service provider with limited specialized SCI care expertise but in close proximity over comprehensive care from an existing specialized SCI center located at a greater distance. Results: Close to three-quarter of participants (70%) indicated satisfaction with healthcare services received for SCI related health conditions. Elderly individuals (61+ years old) rated the availability and quality of healthcare 6% to 11% higher than younger individuals. The perceived fulfillment of healthcare needs was lower in people with incomplete paraplegia (odds ratio (OR) 2.11, 95%-credibility interval (CI) 1.18–3.84), chronic pain (OR 1.85, CI 1.12–3.08), insufficient access to long distance transportation (OR 5.81, CI 2.74–12.82), and longer travel distances to specialized SCI centers. Conclusion: Perceived inadequateness of access to healthcare services was partly related to transportation barriers, suggesting that outreach services or support with transportation are possible solutions. People with incomplete paralysis and pain consistently rated the fulfillment of care needs associated with SCI less favorably, pointing to the need for enhanced advocacy for this vulnerable groups.

Objective: To estimate and compare unmet health care needs of persons with spinal cord injury (SCI) across countries, the causes of these shortfalls, and the role of income.Data Sources: We analyzed cross‐sectional data of 20 countries from the International Spinal Cord Injury (InSCI) survey, a compendium of comparable data on the living situation of persons with SCI. Data included information on high‐, middle‐, and low‐income countries. The survey comprises information on 12,095 participants.Study Design: We used logit regressions to estimate the probability of unmet health care needs of persons with SCI and its causes. We adjusted the results by the individuals' characteristics and countries' fixed effects. We disaggregated the results by income decile of individuals in each country.Data Collection/Extraction Methods: The inclusion criteria for the InSCI survey were adults aged 18 years and older with SCI living in the community, who were able to respond to the survey and who provided informed consent.Principal Findings: Unmet health care needs are significant for people with long‐term conditions like SCI, where people in low‐income groups tend to be more affected. Among the barriers to meeting health care needs, the foremost is health care cost (in 11 of the 20 countries), followed by transportation and service availability. Persons with SCI in Morocco reported the highest probability of unmet health care needs in the sample, 0.54 (CI: 047–0.59), followed well behind by South Africa, 0.27 (CI: 0.20–0.33), and Brazil, 0.26 (CI: 0.20–0.33). In contrast, persons with SCI in Spain, 0.06 (CI: 0.04–0.08), reported the lowest probability of unmet health care needs, closely followed by Norway, 0.07 (CI: 0.05–0.09), Thailand, 0.08 (CI: 0.05–0.11), France, 0.08 (CI: 0.06–0.11), and Switzerland, 0.09 (CI: 0.07–0.10).Conclusions: SCI is a long‐term, irreversible health condition characterized by physical impairment and a series of chronic illness. This makes SCI a high‐need, high‐cost group that faces significant unmet health care needs, which are mainly explained by the costs of health services, transportation, and services availability. This situation is prevalent in low‐, middle‐, and high‐income countries, where persons in lower income groups are disproportionately affected. To improve the situation, a combination of measures from the health and social systems are required.

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Study design: Qualitative exploratory study. Objectives: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting: Caregivers of people with SCI living in the community in Switzerland. Methods: Data were collected through semi-structured interviews. Thematic analysis was performed. Results: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. Conclusions: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.