Spinal Cord Injury In Switzerland Research Articles

The Complexity of Health Self-Management Behavior. Beliefs and Attitudes of Individuals Living With Spinal Cord Injury in Switzerland.

Within the objective of defining targets for interventions to support self-management behaviors among people living with spinal cord injury, this study aims to describe self-management attitudes and beliefs in community-dwelling people living with spinal cord injury in Switzerland and to identify their correlates in terms of personal characteristics and outcomes, such as secondary health conditions and quality of life. This is a cross-sectional, observational study using data from the third community survey of the Swiss Spinal Cord Injury Cohort Study. Out of 1158 individuals, the data revealed high endorsement in areas of prevention importance, perceived knowledge, adherence to recommendations, and proactive problem-solving. Personal and lesion characteristics were significantly associated with differing self-management beliefs and attitudes. Overall, a more positive and proactive stance toward self-management correlated with enhanced outcomes. However, readiness to renounce activities to adhere to self-management recommendations was associated with lower quality of life. The findings confirm the complex nature of self-management among individuals with spinal cord injury, advocating for a tailored, person-centered approach in designing interventions. Highlighting a potential trade-off between strict self-management adherence and quality of life outcomes posits an avenue for balanced, individualized self-management strategies to ameliorate health outcomes and life quality for individuals with spinal cord injury.

Associations between aerobic exercise, muscle strength training and the prevalence of shoulder pain in manual wheelchair users with spinal cord injury

Introduction
 The primary objective of this study is to explore associations between meeting spinal cord injury (SCI)-specific exercise guidelines and the prevalence of shoulder pain in manual wheelchair users (MWU) with SCI in Switzerland. The rationale behind this investigation lies in the high prevalence of shoulder pain among MWU with SCI, impacting their daily activities, leisure- and labor participation, and overall quality of life. Understanding the association between exercise adherence and shoulder pain is crucial, not only for the well-being of the individuals but also for managing healthcare costs associated with pain treatments.
 Methods
 The study utilizes data from the SwiSCI Community Survey 2022 (Gross-Hemmi et al., 2021), focusing on a cohort of 593 manual wheelchair users (MWU) for a cross-sectional analysis, investigating the reporting of shoulder pain, and adherence to SCI-specific exercise guidelines (Martin Ginis et al., 2018). The guidelines, proposed by Martin-Ginis et al. (2018), encompass aerobic exercise and muscle-specific strength training. Logistic regression analyses were employed to assess the association of meeting these guidelines and the prevalence of shoulder pain, while considering potential confounding factors.
 Results
 High prevalence of shoulder pain was observed, affecting 40% of the MWU surveyed, which is in line with previous observations. Additionally, the study found that a significant proportion of the population did not meet the recommended guidelines for aerobic exercise (46%) and muscle strength training (64%). Logistic regression analyses showed that non-adherence to aerobic exercise guidelines was associated with 1.55 to 1.97 higher odds of reporting shoulder pain. No association of muscle strength training with the shoulder pain could be found. Therefore, meeting both aerobic and muscle strength guidelines did not yield any association with shoulder pain. Adjustments for potential confounders such as sex, age, lesion level, completeness, time since injury, and mobility scores, did not change the association between adherence to guidelines and shoulder pain.
 Discussion/Conclusion
 The prevalence of shoulder pain in the study sample is high (40%) and in line with previous publications. Compared to 75% of the Swiss general population being physical active for more than 2.5 hour a week (Bundesamt für Statistik, 2019), only 54% of the study sample is meeting the guidelines for at least the “Starter level” on aerobic exercise (cardiorespiratory, ≥ 2x 20 min/week). Those who are not meeting the aerobic exercise guidelines have 1.55 to 1.97 higher odds to have shoulder pain. Despite foreseen shoulder fitness benefit, 64% is not meeting the guidelines on muscle strength training. To further examine the relation between shoulder use, -exercise and shoulder pain, longitudinal studies on dose-effect are needed.
 References
 Gross-Hemmi, M. H., Gemperli, A., Fekete, C., Brach, M., Schwegler, U., & Stucki, G. (2021). Methodology and study population of the second Swiss national community survey of functioning after spinal cord injury. Spinal Cord, 59, 363-372. https://doi.org/10.1038/s41393-020-00584-3
 Martin Ginis, K. A., van der Scheer, J. W., Latimer-Cheung, A. E., Barrow, A., Bourne, C., Carruthers, P., Bernardi, M., Ditor, D. S., Gaudet, S., de Groot, S., Hayes, K. C., Hicks, A. L., Leicht, C. A., Lexell, J., Macaluso, S., Manns, P. J., McBride, C. B., Noonan, V. K., Pomerleau, P. … Goosey-Tolfrey, V. L. (2018). Evidence-based scientific exercise guidelines for adults with spinal cord injury: an update and a new guideline. Spinal Cord, 56(4), 308-321. https://doi.org/10.1038/s41393-017-0017-3
 Bundesamt für Statistik. (Ed.). (2019). Schweizerische Gesundheitsbefragung 2017. Körperliche Aktivität und Gesundheit [Swiss Health Survey 2017: Physical activity and health]. Bundesamt für Statistik. https://www.sportobs.ch/inhalte/Downloads/213-1708.pdf

Use of professional home care in persons with spinal cord injury in Switzerland: a cross-sectional study

BackgroundPersons with spinal cord injury (SCI) living in the community often require care. The boundaries between professional home care and informal care are blurred, and it is unclear who the typical user of home care is. The objective of this study was to describe the characteristics of persons with SCI using professional home care in Switzerland, determine the frequency of home care visits, and investigate the association of sociodemographic factors, SCI-specific characteristics, secondary health conditions, and functional independence with the use of home care.MethodsWe used cross-sectional data from the 2017 community survey of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). Out of 3,959 eligible individuals 1294 completed the questionnaire and were included in the analysis (response rate 33%). Using descriptive statistics, differences between home care users and non-users as well as the frequency of home care visits were investigated. The association between sociodemographic factors, SCI-specific characteristics, secondary health conditions, functional independence and the use of home care was analyzed using multivariable logistic regression. Multiple imputation was used to account for missing data.ResultsOf 1,294 participants, 280 (22%) used professional home care. The median weekly professional home care duration was 6 h (Q1 = 2, Q3 = 12). More home care was used in persons with lower functional independence (Odds ratio (OR) 0.30 per 10 unit decrease in the Spinal Cord Independence Measure, 95%-Confidence interval (CI) 0.24–0.37), fewer secondary health conditions (OR 0.96 per unit Spinal Cord Injury Secondary Conditions Scale, 95%-CI 0.94–0.99), tetraplegia (OR 2.77, 95%-CI 1.92–4.00), women (OR 2.42, 95%-CI 1.70–3.43), higher age (OR 1.22 per 10 years increase, 95%-CI 1.06–1.39), living alone (OR 2.48, 95%-CI 1.53–4.03), and those receiving support from an informal caregiver (OR 1.88, 95%-CI 1.27–2.77).ConclusionsThis is the first study to examine the use of professional home care from the perspective of persons with SCI in Switzerland. Lower functional independence strongly predicts increased home care use. The findings showed that professional home care complements informal care and is more likely to be used by individuals with SCI who live alone, have tetraplegia, and are female.

Technology-Assisted Upper Limb Therapy (TAULT): Evaluation of Clinical Practice at a Specialised Centre for Spinal Cord Injury in Switzerland

(1) Improving upper limb function is essential for people with tetraplegia. Although promising, technology-assisted upper limb training is understudied in this population. This article describes its implementation in a Swiss spinal cord injury rehabilitation centre and reports on the observed changes. (2) A retrospective evaluation of clinical data from January 2018 to June 2020 examined patient characteristics, training parameters, goal-setting practices, goal achievement, and changes in muscle strength over the course of technology-assisted upper limb training. (3) Data analysis included 61 individuals, 68.9% of whom had a spinal cord injury. The ArmeoSpring was the most frequently used device. The typical treatment regimen was three 25 min sessions per week, with evaluations approximately every six weeks. The 1:1 sessions, delivered by specialised staff, focused primarily on improving shoulder movement and the ability to eat and drink. Functional goals were set using a grid. Performance on selected goals in the areas of ‘body functions’ and ‘activities & participation’ as well as muscle strength, increased over the course of training. (4) The ArmeoSpring has broad applicability. Despite the observed improvements, the isolated effect of technology-assisted upper limb training cannot be concluded due to the lack of a control group and various concurrent interventions.

Association Between the Availability of Mobility Assistive Products and Participation Outcomes in Individuals With Spinal Cord Injury in Switzerland.

This study investigated the association between the reported availability of mobility assistive products and the perceived frequency, restriction, and satisfaction of participation in individuals with spinal cord injury in Switzerland. This study was based on a cross-sectional analysis based on questionnaire data collected from the Swiss SCI Cohort Study community survey in 2012 (N = 492). The availability of 12 mobility assistive products were analyzed as the main predictor variable. The outcomes of interest were the frequency, restriction, and satisfaction of participation scales as measured by the 32-item Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P). The association between availability of mobility assistive products and participation was investigated using linear regressions analyses. All mobility assistive products were ranked in terms of relevance to improve participation by means of an importance performance plot. The availability of a sports wheelchair or a hand bike were both significant in reducing the restriction to participation. Having an adapted car increased the frequency of participation. The availability of a sports wheelchair or a hand bike was significantly associated with less restriction in participation. With an unmet need of up to 36%, the known health benefits of regular physical activity and thereby cost-saving potential for the health care system, external support in the acquiring or use of these sports-related mobility assistive products could be an easy target for intervention.

The Most Important Assistive Devices for Persons with Spinal Cord Injury in Switzerland: A Cross-Sectional Study

Persons with spinal cord injury (SCI) rely significantly on the use of assistive devices (ADs) to increase independence and enhance participation. This study aimed to determine the most important ADs for persons with SCI living in Switzerland and to identify design features of potentially novel ADs greatly facilitating persons with SCI in performing the tasks of daily life. Descriptive statistics were used to analyze cross-sectional data (N = 1294 participants) from the Swiss Spinal Cord Injury Cohort Study 2017. Open-ended questions regarding the importance of ADs and desirable novel ADs were manually coded and assigned to categories. The results showed that the most important ADs for persons with SCI were a manual wheelchair (61%), an adapted car (46%), and a wheelchair tractor (20%). The importance of ADs varied with gender, age, and SCI severity. While none of the participants indicated a desire for a completely novel AD, over one-fifth described specific design features of novel ADs or adaptions of existing ADs, which were most often related to facilitating transfer (12%), walking support (10%), and facilitating access (9%). These findings have implications for the design and development of ADs to better meet the needs of persons with SCI, improve their quality of life, and promote their independence and participation in daily activities.

Labor market costs for long-term family caregivers: the situation of caregivers of persons with spinal cord injury in Switzerland

BackgroundFamily members are key in the provision of care to persons facing disability. To undertake the role as caregivers, they face many costs, being the setback in the labor market one of the most relevant.MethodsWe analyze comprehensive data from long-term family caregivers of persons with spinal cord injury (SCI) in Switzerland. Using information about their working situation before and after becoming caregivers, we estimated the reduction in working hours and the associated income loss.ResultsOn average, family caregivers reduced their working hours by about 23% (8.4 h per week), which has a monetary value of CHF 970 per month (EUR 845). Women, older caregivers, and less educated caregivers have a much higher opportunity cost in the labor market: CHF 995 (EUR 867), CHF 1,070 (EUR 932), and CHF 1,137 (EUR 990) respectively. In contrast, family members who care for a person that works have a much lower impact on their working status, CHF 651 (EUR 567). Interestingly, the reduction in their working time is only a third of the extra work they face as caregivers.ConclusionHealth and social systems rely on the unpaid work of family caregivers. To guarantee their long-term involvement, family caregivers need to be recognized for their work and potentially compensated. Without family caregivers, it is very unlikely societies can cope with the increasing need for care, as professional services are limited and expensive.

Role distribution and collaboration between specialists and rural general practitioners in long-term chronic care: a qualitative study in Switzerland

This study explores general practitioners' (GPs') and medical specialists' perceptions of role distribution and collaboration in the care of patients with chronic conditions, exemplified by spinal cord injury. Semi-structured interviews with GPs and medical specialists caring for individuals with spinal cord injury in Switzerland. The physicians we interviewed were recruited as part of an intervention study. We used a hybrid framework of inductive and deductive coding to analyse the qualitative data. Six GPs and six medical specialists agreed to be interviewed. GPs and specialists perceived the role of specialists similarly, namely as an expert and support role for GPs in the case of specialised questions. Specialists' expectations of GP services and what GPs provide differed. Specialists saw the GPs' role as complementary to their own responsibilities, namely as the first contact for patients and gatekeepers to specialised services. GPs saw themselves as care managers and guides with a holistic view of patients, connecting several healthcare professionals. GPs were looking for relations and recognition by getting to know specialists better. Specialists viewed collaboration as somewhat distant and focused on processes and patient pathways. Challenges in collaboration were related to unclear roles and responsibilities in patient care. The expectations for role distribution and responsibilities differ among physicians. Different goals of GPs and specialists for collaboration may jeopardise shared care models. The role distribution should be aligned according to patients' holistic needs to improve collaboration and provide appropriate patient care.

Does the socioeconomic status predict health service utilization in persons with enhanced health care needs? Results from a population-based survey in persons with spinal cord lesions from Switzerland

BackgroundEvidence suggests that the socioeconomic status (SES) affects individuals’ health service utilization. Spinal cord injury is a condition that often leads to physical impairments and enhanced health care needs. It therefore presents an informative and yet under-researched case in point to investigate social inequalities in health service utilization. This study aims to describe associations between SES and health service utilization in adults with spinal cord injury from Switzerland.MethodsWe use cross-sectional data from 1,294 participants of the Swiss Spinal Cord Injury Cohort Study community survey 2017. SES was operationalized with education, household income, perceived financial hardship, subjective status, and granting of supplementary financial benefits. Health service utilization was assessed with information on visits to 13 different health care providers and four health care institutions (inpatient stays, outpatient clinics, emergency departments, specialized spinal cord centers) during the past 12 months. The dichotomized outcomes on service utilization (visited vs. not visited) were regressed on SES indicators, including adjustments for sociodemographics, lesion characteristics, and health status.ResultsPersons with higher SES reported higher likelihood for specialist, dentist, and dental hygienist visits and reported utilizing a larger number of different care providers. Further, specific SES indicators were associated with certain care provider visits (i.e., higher education and subjective status: higher odds for pharmacist visits; higher income: higher odds for natural healer visits; higher subjective status: higher odds for chiropractor visits; supplementary benefit granting: higher odds for general practitioner and home care service visits). We found statistically non-significant trends towards lower likelihood for inpatient stays, outpatient clinic and emergency department visits and enhanced likelihood for specialized spinal cord-center visits in higher SES groups.ConclusionsThis study generally supports the claim that basic health care provision is guaranteed for all patients with spinal cord injury in Switzerland, independently of their SES. However, social inequalities were still observed for the utilization of specific providers, such as oral health care providers. Given that oral health is key for health maintenance in persons with spinal cord injury, specific interventions to enhance regular dental check-ups in lower SES groups are highly recommended.

The economic value of long-term family caregiving. The situation of caregivers of persons with spinal cord injury in Switzerland.

Health systems rely on the unpaid work of family caregivers. Nevertheless, demographic changes suggest a shortage of caregivers in the near future, which can constrain the long‐term care policy in many countries. In order to find ways to support family caregivers, a primary effort would be to estimate how much their work is worth. This paper estimates the economic value of long‐term family caregivers and how these costs would be shared by the health system, the social insurances and the cared‐for person in the absence of informal caregivers. We use data of 717 family caregivers of persons with spinal cord injury (SCI) in Switzerland. We implemented the proxy‐good method and estimated the market value of their work if performed by professional caregivers. Our results show that family caregivers in the sample spent an average of 27 hr per week caring for a relative for almost 12 years. This work, if undertaken by professional home care, has a market value of CHF 62,732 (EUR 56,455) per year. In the absence of family caregivers, these costs should be financed by the health insurances (47%), by the cared‐for person (24%) and by the social insurances (29%). It is in the best interest of the cared‐for person and of the healthcare and social systems to keep a sustained supply of family caregivers. One option is finding ways to recognise and compensate them for their work and make it less cumbersome.

Utilization of health care providers by individuals with chronic spinal cord injury.

Questionnaire survey conducted in 2017 as part of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). To elucidate the use of outpatient health care providers by individuals with chronic spinal cord injury in a situation of free choice and ample supply. Community, nationwide. The frequency of visits was compared to that of a survey conducted five years earlier. Using regression tree analysis, the characteristics of individuals with extensive use of health care providers' services were investigated. Substitution effects, where health care users replace one provider type by another, were quantified using likelihood ratios for positive outcomes. The questionnaire was returned by 1,294 persons (response rate 33%). Participants reported visits to 14 different health care providers within the previous 12 months. Most often visited was the general practitioner (GP) by 82%. Older individuals used fewer health care providers than younger participants. Individuals with spasticity and females visited a broader variety of health care providers than the average user. The participants used fewer providers than they did five years ago. Health care users were not found to be substituting one provider type with another. Individuals with spinal cord injury in Switzerland use a wide array of medical service providers. All providers were used complementary to each other without redundancies between providers. The use of providers is driven by health-related factors and gender. Old age was not as much a driver for high utilization as described in other settings.

Inception cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI): Design, participant characteristics, response rates and non-response.

ObjectivesTo provide a methodological reference paper for the inception cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI), by detailing its methodological features and reporting on participant characteristics, response rates and non-response bias.DesignProspective cohort study starting in 2013 in all 4 specialized rehabilitation centres in Switzerland.SubjectsIncluded are 655 newly diagnosed first rehabilitation patients aged ≥16 years with traumatic or non-traumatic spinal cord injury (TSCI, NTSCI).MethodsDescriptive statistics were used to depict participant characteristics and to compare characteristics of responders and non-responders. Logistic regressions were conducted to estimate non-response bias.RESULTSThe sample consisted of 69% males, with mean age 53.5 years, 57.9% TSCI, 60.7% paraplegia and 78.8% incomplete SCI. Males and younger persons more often sustained TSCI and more severe SCI, resulting in longer duration of rehabilitation. Complete lesions were more prevalent in TSCI compared to NTSCI. The response rate was 47.5% and study participation was less likely in females, older persons, persons with lower functional independence and those with NTSCI.ConclusionSwiSCI inception cohort data enable the estimation of epidemiological figures of SCI in Switzerland, and prognostic and trajectory modelling of outcomes after SCI to guide policy, service provision and clinical practice.LAY ABSTRACTThe inception cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) is a prospective study including newly diagnosed first rehabilitation patients aged over 16 years with traumatic or non-traumatic spinal cord injury (SCI) who received first rehabilitation in a specialized center in Switzerland. This paper describes the methods and the design of the SwiSCI inception cohort and reports on participant characteristics, response rates and differences between respondents and non-respondents. The response rate was 47.5% and 655 patients participated in the study. Of participants, 69.0% were male, mean age was 53.5 years, 57.9% had traumatic SCI, 60.7% paraplegia and 78.8% incomplete SCI. Male subjects and younger persons more often sustained traumatic SCI and more severe SCI, resulting in longer duration of rehabilitation. Complete lesions were more prevalent in traumatic SCI compared with non-traumatic SCI. Females, older persons, persons with lower functional independence and those with non-traumatic SCI were less likely to participate in the study.

Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey.

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. 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. Cross-sectional survey. Community setting in Switzerland. 717 family caregivers of persons with spinal cord injury living at home. 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. 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. 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.

Mental health, quality of life, self-efficacy, and social support of individuals living with spinal cord injury in Switzerland compared to that of the general population.

Comparative study of survey self-report data. To compare individuals living with spinal cord injury (SCI) in Switzerland to the general population in terms of mental health, quality of life, self-efficacy, and social support. Community, Switzerland. Data from the 2017 community survey of the Swiss Spinal Cord Injury Cohort Study were compared to data from two matched (1:3 nearest neighbor propensity score) general population surveys collected in the same year. Measures of mental health (mental health index, psychological distress item, vitality scale, and energy item), quality of life (WHOQOL-BREF item), self-efficacy (General Self-Efficacy Scale item), and social support (items of relationship satisfaction, living alone, and marital status) were compared across datasets using regression adjusted for non-response correction weights. The analyses were then replicated in subgroups defined by sociodemographic, lesion-related, and secondary health issues factors. Individuals with SCI had significantly higher psychological distress and poorer mental health, vitality, energy, and quality of life than the general population, with medium to large effect sizes (Cohen's d: 0.35-1.08). They also had lower self-efficacy and relationship satisfaction, lived more frequently alone, and were more frequently single. Individuals with less severe secondary health issues reported mental health and quality of life more similar to the general population than those reporting more severe issues. This study highlights a significant long-term impact of SCI on well-being and psychosocial resources, underlining the need for ongoing biopsychosocial care beyond inpatient rehabilitation.

Change in environmental barriers experienced over a 5-year period by people living with spinal cord injury in Switzerland: a prospective cohort study.

Cohort study with two measurement occasions. To investigate change in environmental barriers experienced by people living with spinal cord injury (SCI) over a 5-year period. Community, Switzerland. Data were from the Swiss spinal cord injury (SwiSCI) survey. Main outcome measure was the Nottwil Environmental Factors Inventory-Short Form. Random-effects Poisson regression featuring between-within estimation was used to examine predictors of the number of environmental barriers and of its change over time. One thousand five hundred and forty-nine persons participated in Survey 2012 and 1530 participated in Survey 2017; 761 participated in both surveys. In both surveys most participants reported at least three barriers. Leading issues were unfavorable climate, inaccessibility of buildings and public spaces, and lack of or insufficiently adapted means of transportation. Reporting of barriers related to climate, finances, and state services declined over time. Between subjects, having more health problems, lesser physical independence, poorer mental health, and a lower household income were related to a higher number of barriers experienced. Within subjects, improvements in income, physical independence, and mental health over time were related to a reduction in barriers. Inaccessibility of buildings and places and problems with transportation remained major barriers over a 5-year period and should be priorities of Swiss disability policy. People with reduced mental and physical health, and those with lower income are vulnerable groups deserving specific attention. Policies targeting income and life-long rehabilitation targeting health promotion and maintenance may be suitable means to reduce the experience of environmental barriers.

An exploration of information seeking behavior among persons living with spinal cord injury in Switzerland.

Observational study using data from the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017). To examine information seeking of individuals with spinal cord injury (SCI) in Switzerland and its association with personal characteristics, quality of life, satisfaction with health, and healthcare services utilization. Community. Descriptive statistics were used to describe information needs, information sources, and health literacy of the participants. Linear, logistic, and Poisson regression analyses were used to assess the association of information-related variables with personal characteristics, quality of life, satisfaction with health, and healthcare services utilization. One quarter of the 1294 study participants (24.6%) reported having information needs. Most frequently mentioned were needs for medical information about SCI, complications and comorbidities (30.5%), and information on living with SCI (28.6%). The most often used sources of information were healthcare professionals (72.3%), the Internet (43.2%), and other people living with SCI (40.8%). Almost half of the participants (41.4%) were only somewhat or not at all confident in their ability to find information. Having information needs was associated with suboptimal outcomes. This study confirms the importance of information for individuals living with SCI. By providing evidence on topics to be addressed and modalities of information delivery, our findings can help institutions in developing information to support individuals living with SCI in their daily activities. Information should cover all aspects of living with SCI, be relevant to and understandable for people of all backgrounds, and bemade available online and offline.

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland

ObjectiveTo examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience. MethodsNationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed. ResultsHealth professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers’ satisfaction with own health. ConclusionCaregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it. Practice implicationsBuilding health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.

Living situation of family caregivers of persons with spinal cord injury.

To describe the living situation of family caregivers of persons with spinal cord injury. Cross-sectional questionnaire. Primary family caregivers of persons with chronic spinal cord injury in Switzerland. Cross-sectional study of family caregivers of persons with spinal cord injury. For comparison, the study population was matched to family care-givers of persons dealing with long-term health conditions in the general population, using a propensity-score based algorithm. A total of 717 family caregivers participat-ed in the survey (35% response rate). Participants were mostly female (72%), mean age 57 years, and had spent approximately 13 years caring for their relative. A mean of 21 h/week was spent providing care and assistance. The vast majority of family care-givers reported coping well with their situation. However, support from public services was deemed inadequate. Compared with family caregivers in the general population, family caregivers of persons with spinal cord injury performed more caring tasks and reported a slightly lower quality of life. Family caregivers of persons with spinal cord injury are self-reliant to cope with their situation, but report discontent with public support ser-vices. The healthcare system could provide alternative support measures, such as direct financial compensation.

Improving reproductive health care services for women with a physical disability: Insights from a community survey of women with spinal cord injury in Switzerland

Objective: To describe a cohort of women with a physical disability in various reproductive life stages to support the development of specific management targets, especially during the fertile stage. Design: Community survey. Population / Sample: We analysed data from 440 female participants with chronic spinal cord injury (SCI) aged over 16 years from the cross-sectional community survey of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) in 2017. Methods: The full cohort was analysed using descriptive analysis. For women in the fertile reproductive life stage, a regression technique was used to identify the predictors of becoming a mother after SCI. Results: More than 50% of the sample were aged over 56, and approximately one fourth were in the fertile (16-45 years) age group. Motherhood after SCI was most prevalent in women with low and incomplete lesions and those who sustained an SCI at a young age. The chances of giving birth significantly decreased when sustaining an SCI after the age of 35. The mean age at first delivery after SCI (age 31.2±5 years) was five years higher compared to women with an SCI who gave birth before sustaining SCI (age 26.2±5 years). Conclusions: The study provides evidence for the need for tailored and specific lifespan adjusted obstetric and gynaecological services for women with SCI and for women with a disability in general.

Factors associated with labor market participation of persons with traumatic SCI in Switzerland: analyzing the predictive power of social background, health, functional independence, and the environment.

Cross-sectional study using data from the 2012 community survey of the Swiss Spinal Cord Injury Cohort Study. To identify associations between selected factors related to the social background, health, functional independence, and the environment of persons with spinal cord injury (SCI) and their labor market participation. Community-based, Switzerland. Labor market participation (i.e., involvement in paid work or not) was determined for a sample of 966 persons with traumatic SCI who were of employable age at the time of the survey. Applying an exploratory approach, potential predictors of labor market participation were selected based on the literature and using a bidirectional stepwise variable selection approach. Descriptive statistics were calculated and weighted bootstrapped multiple logistic regressions were applied to describe the associations between the selected predictor variables and labor market participation, controlling for sociodemographic and SCI-related characteristics. A total of 568 (58.8%) of the participants were involved in paid work at the time of the survey. From the 17 selected predictor variables, general functional independence and Swiss citizenship showed a significant positive association, and chronic pain a negative association with involvement in paid work. Beyond previously established sociodemographic and injury-related risk factors such as female gender, low education, and high lesion severity, functional independence, chronic pain, and nationality proved crucial for labor market participation. These factors should receive particular attention in medical and vocational strategies striving for a sustainable work integration of persons with SCI.