Who is at Risk of Loneliness? A Cross-sectional Recursive Partitioning Approach in a Population-based Cohort of Persons With Spinal Cord Injury.

OBJECTIVE: To develop a more thorough understanding of the risk factors for loneliness in persons with a physical impairment, using a population-based sample of persons with spinal cord injury (SCI), based on regression modeling and a recursive partitioning approach. DESIGN: Cross-sectional, observational cohort. SETTING: Community, Switzerland. PARTICIPANTS: Community-dwelling persons with spinal cord injury (N=1283) 16 years or older. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Loneliness was assessed using a modified version of the UCLA Three-Item Loneliness Scale. RESULTS: Those with the most disadvantaged socioeconomic characteristics in terms of education, income, subjective social position, employment status, and financial hardship demonstrated the highest risk for loneliness. Of the sociodemographic characteristics, only age had an association with loneliness, whereby persons aged 31-45 had the highest propensity for experiencing loneliness. We also saw that those with higher lesion levels and less functional independence were associated with higher levels of loneliness. In conditional inference tree analysis subjective social position, financial hardship, and functional independence had the highest discriminative power, with nationality and living arrangement having a less important role. CONCLUSIONS: Our findings highlight the vulnerability of persons with SCI with unfavorable socioeconomic status to loneliness. Furthermore, our findings show that persons who are more constrained because of functional limitations may face restrictions to social participation and therefore be at a higher risk of loneliness. This population-based evidence contributes to the better targeting of services aimed at alleviating loneliness for persons with a lower socioeconomic position and those with more functional limitations in everyday life.

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

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.

Socioeconomic status and social relationships in persons with spinal cord injury from 22 countries: Does the countries' socioeconomic development moderate associations?

BACKGROUND: Social relationships are powerful determinants of health and inequalities in social relationships across socioeconomic status (SES) groups may contribute to social inequalities in health. This study investigates inequalities in social relationships in an international sample of persons with spinal cord injury and explores whether social gradients in relationships are moderated by the countries' socioeconomic development (SED). METHODS: Data from 12,330 participants of the International SCI Community Survey (InSCI) performed in 22 countries were used. We regressed social relationships (belongingness, relationship satisfaction, social interactions) on individual SES (education, income, employment, financial hardship, subjective status) and countries' SED (Human Development Index) using multi-level models (main effects). To test potential moderation of the SED, interaction terms between individual SES and countries' SED were entered into multi-level models. RESULTS: Paid work, absence of financial hardship and higher subjective status were related to higher belongingness (OR, 95% CI: 1.50, 1.34-1.67; 1.76, 1.53-2.03; 1.16, 1.12-1.19, respectively), higher relationship satisfaction (OR, 95% CI: 1.28, 1.15-1.42; 1.97, 1.72-2.27; 1.20, 1.17-1.24, respectively) and fewer problems with social interactions (Coeff, 95% CI: 0.96, 0.82-1.10; 1.93, 1.74-2.12; 0.26, 0.22-0.29, respectively), whereas associations with education and income were less consistent. Main effects for countries' SED showed that persons from lower SED countries reported somewhat higher relationship satisfaction (OR, 95% CI: 0.97, 0.94-0.99) and less problems with social interactions (Coeff, 95% CI: -0.04, -0.09- -0.003). Results from moderation analysis revealed that having paid work was more important for relationships in lower SED countries, while education and subjective status were more important for relationships in higher SED countries (interaction terms p<0.05). CONCLUSION: Social relationships in persons with spinal cord injury are patterned according to individual SES and the countries' SED and larger socioeconomic structures partly moderate associations between individual SES and social relationships.

Detecting subgroups in social participation among individuals living with spinal cord injury: a longitudinal analysis of community survey data.

STUDY DESIGN: Longitudinal community survey. OBJECTIVES: To determine subgroups in social participation of individuals living with spinal cord injury (SCI). SETTING: Community. METHODS: Data were collected in 2012 and 2017 as part of the community survey of the Swiss Spinal Cord Injury cohort. Participation was assessed using the 33-item Utrecht Scale of Evaluation of Rehabilitation-Participation evaluating frequency of, restrictions in and satisfaction with productive, leisure, and social activities. Linear mixed-effects model trees were used to distinguish subgroups in participation associated with sociodemographic and lesion characteristics. RESULTS: In all, 3079 observations were used for the analysis, of which 1549 originated from Survey 2012, 1530 from Survey 2017, and 761 from both surveys. Participants were mostly male (2012: 71.5%; 2017: 71.2%), aged on average 50 years (2012: 52.3; 2017: 56.5), with an incomplete paraplegia (2012: 37.5%; 2017: 41.8%) of traumatic origin (2012: 84.7%; 2017: 79.3%). There was limited within-person variation in participation over the 5-year period. Participation varied with age, SCI severity, education, financial strain, number of self-reported health conditions (SHCs), and disability pension level. Among modifiable parameters, the number of SHCs and disability pension level emerged as the most frequent partitioning variables, while education was most informative for participation in productive, leisure, and social activities. CONCLUSIONS: Long-term rehabilitation management and clinical practice should target people most prone to decreased participation in major life domains. Our study indicates that the alleviation of SHCs, engagement in further education, or adjusting disability pension level are promising areas to improve participation of persons living with SCI.

Methodology and study population of the second Swiss national community survey of functioning after spinal cord injury.

STUDY DESIGN: Descriptive study of the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017) conducted between 03/2017 and 03/2018. OBJECTIVES: To describe the methodology, recruitment results, characteristics of participants and non-participants, and non-response of the Survey 2017. SETTING: Community. METHODS: Description of the sampling strategy and sampling frame. Recruitment results and characteristics of participants and non-participants of the two Survey 2017 questionnaire modules were analyzed using descriptive statistics. Determinants of survey participation were examined using multivariable logistic regression, and the impact of non-response bias on survey results was evaluated using inverse-probability weighting. RESULTS: Out of 3959 persons who met the eligibility criteria, 1530 responded to module 1 (response rate 38.6%) and 1294 to module 2 (response rate 32.7%) of the Survey 2017. Of the 4493 invited persons, 1549 had participated in the first SwiSCI community survey conducted in 2012/2013. Of these, 1332 were invited to the Survey 2017 and 761 participated in module 1 (response rate 58.9%) and 685 in module 2 (response rate 53.1%). The majority of module 1 participants were male (71.2%, 95% CI: 68.9, 73.5), with a median age of 57 (IQR: 46.0, 67.0) years and incomplete paraplegia (41.9%, 95% CI: 39.3, 44.5). Survey non-response was higher in the oldest age group, among females, and those with tetraplegia. CONCLUSIONS: The design of the Survey 2017 was successful in recruiting a substantial proportion of the SCI source population in Switzerland. To counteract survey non-response, survey weights may be applied to subsequent analyses. SPONSORSHIP: none.

Partnership Status and Living Situation in Persons Experiencing Physical Disability in 22 Countries: Are There Patterns According to Individual and Country-Level Characteristics?

Persons experiencing disabilities often face difficulties to establish and maintain intimate partnerships and the decision whether to live alone or with others is often not their own to make. This study investigates whether individual and country-level characteristics predict the partnership status and the living situation of persons with spinal cord injury (SCI) from 22 countries. We used data from 12,591 participants of the International SCI Community Survey (InSCI) and regressed partnership status and living situation on individual (sociodemographic and injury characteristics) and country-level characteristics (Human Development Index, HDI) using multilevel models. Females, younger persons, those with lower income, without paid work, more severe injuries, and longer time since injury were more often single. Males, older persons, those with higher income, paid work, less severe injuries, and those from countries with higher HDI more often lived alone. This study provides initial evidence for the claim that the partnership status and the living situation of people with SCI are influenced by sociodemographic and socioeconomic factors and are not merely a matter of choice, in particular for those with severe injuries.

Quality of Life and the Health System: A 22-Country Comparison of the Situation of People With Spinal Cord Injury.

OBJECTIVE: To analyze and compare how performance of the health system are linked to the self-reported quality of life (QOL) of people with spinal cord injury (SCI) in 22 countries participating in the International Spinal Cord (InSCI) community survey. DESIGN: Cross-sectional survey. SETTING: Twenty-two countries representing all 6 World Health Organization regions, community setting. PARTICIPANTS: Persons (N=12,591) with traumatic or nontraumatic SCI aged ≥18 years. INTERVENTIONS: Not applicable. MAIN OUTCOMES: Self-reported satisfaction on several indicators that include: health, ability to perform daily activities, oneself, personal relationships, and living conditions. A total score of QOL was calculated using these 5 definitions. RESULTS: The most important indicators for self-reported QOL of persons with SCI were social attitudes and access to health care services, followed by nursing care, access to public spaces, the provision of vocational rehabilitation, transportation, medication, and assistive devices. In general, persons with SCI living in higher-income countries reported a higher QOL than people in lower-income countries, with some exceptions. The top performing country was The Netherlands with an estimated median QOL of 66% (on a 0%-100% scale). CONCLUSIONS: The living situation of people with SCI is highly influenced by the performance of the health system. Measuring and comparing health systems give accountability to a country's citizens, but it also helps to determine areas for improvement.

Participation in People Living With Spinal Cord Injury in Switzerland: Degree and Associated Factors.

OBJECTIVE: To describe different domains of participation such as productive, leisure and social activities and describe sociodemographic and spinal cord injury (SCI)-related characteristics that are associated with participation in these domains in a large sample of community-dwelling individuals with SCI in Switzerland. DESIGN: Cross-sectional population-based survey within the Swiss Spinal Cord Injury Cohort Study. Participation in major life domains was measured by the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation). Univariable unconditional analysis and unbiased recursive partitioning were used to identify the predominant associations of sociodemographic and SCI-related characteristics with multiple dimensions of participation. SETTING: Community. PARTICIPANTS: Swiss residents aged 16 years or older and living with traumatic or nontraumatic SCI (N=1549). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The USER-Participation, a 32-item self-report questionnaire with 3 scales (Frequency, Restrictions, and Satisfaction) to assess key domains of participation (productive, leisure, social). RESULTS: Frequency (median 34.5 out of 100) in productive, outdoor leisure, and social activities was reduced with distinctive perceived restrictions in work and education, sports, and partner relationships. Domestic leisure activities (65.4%) and maintaining social relationships (76.1%) were those activities most often performed and with least perceived restrictions. Participants were generally satisfied with their current daily life activities. Lower scores across all participation scales were associated with more severe SCI, higher age, being female, not having a partner, and lower level of education. CONCLUSIONS: This study provides a thorough analysis of participation in major life domains of individuals with SCI in Switzerland. Different risk groups for reduced levels in participation in productive, leisure, and social activities were identified. This population-based evidence is instrumental to the better targeting of rehabilitation and policy interventions that aim to improve community participation.

Temporal Patterns of Infant Regulatory Behaviors in Relation to Maternal Mood and Soothing Strategies.

This study investigates the temporal patterning of infant self-regulatory behaviors (crying/fussing, sleeping) in relation to both infant (age, sex, regulatory problems) and maternal variables (soothing behaviors, mood). Self-regulatory and soothing behaviors were assessed in 121 mother-infant dyads (4-44 weeks) by the Baby's Day Diary at 5 min intervals over 3 days. Further infant characteristics and maternal mood were assessed by questionnaires (DASS, CES-D, STAI) and the Diagnostic Interview for the Assessment of Regulatory Problems in Infancy and Toddlerhood. Data were analyzed using generalized additive mixed models. Negative maternal mood was associated with a deviant course of crying/fussing during the day. Body contact was associated with reduced variability in the 24 h course of sleep. Mother-infant transactional processes-above and beyond known relationships with overall levels of crying/fussing and sleeping-might play out on the temporal dimension of infant regulatory behaviors.

The Cross-Cultural Societal Response to SCI: Health and Related Systems.

OBJECTIVE: The Learning Health System for Spinal Cord Injury (LHS-SCI) is an initiative aligned with the World Health Organization's (WHO) Global Disability Action Plan. Based on the outcomes of this initiative, countries will be able to shape their health systems to better respond to the needs of persons with SCI. This paper describes and compares the macroeconomic situation and societal response to SCI across 27 countries from all 6 WHO regions that will participate in the LHS-SCI initiative. METHODS: A concurrent mixed-methods study was conducted to identify key indicators that describe the situation of persons with SCI, the general societal response, the health and rehabilitation system, and the experience for a SCI person after discharge from inpatient rehabilitation. RESULTS: A strong correlation was found between the efficiency of a healthcare system and the amount a country invests in health. Higher availability of resources does not necessarily imply that unrestricted access to the healthcare system is warranted. Variations in the health systems were found for various domains of the health and rehabilitation systems. CONCLUSIONS: The evaluation and comparative analysis of the societal response to SCI raise the awareness of the need of more standardized data to identify current needs and gaps in the quality and access to SCI-specific health system.

Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey.

OBJECTIVE: The Learning Health System for Spinal Cord Injury (LHS-SCI) is an initiative embedded in the World Health Organization's (WHO's) Global Disability Plan and requires the statistical collection of data on the lived experience of persons with SCI to consequently formulate recommendations and policies. The International Spinal Cord Injury (InSCI) community survey has been developed as an initial step to gain information about the lived experience of persons with SCI within and across diverse nations. DESIGN: InSCI is a multinational community survey based on the International Classification of Functioning, Disability and Health Core Sets for SCI and involves 28 countries from all six WHO regions. The study will be implemented in 2017. Overall aims, guiding principles on sampling strategies, data collection modes, and reminder management are described. CONCLUSIONS: InSCI will be the first survey to be conducted simultaneously in many countries and in all six WHO world regions that identifies the factors associated with functioning, health, and well-being of persons living with SCI. Expected results of the survey will be used for the basis of conducting stakeholder dialogs for policy reforms designed to improve the functioning, health maintenance, and well-being of persons with SCI.

Inter-rater reliability and acceptance of the structured diagnostic interview for regulatory problems in infancy.

BACKGROUND: Regulatory problems such as excessive crying, sleeping-and feeding difficulties in infancy are some of the earliest precursors of later mental health difficulties emerging throughout the lifespan. In the present study, the inter-rater reliability and acceptance of a structured computer-assisted diagnostic interview for regulatory problems (Baby-DIPS) was investigated. METHODS: Using a community sample, 132 mothers of infants aged between 3 and 18 months (mean age = 10 months) were interviewed with the Baby-DIPS regarding current and former (combined = lifetime) regulatory problems. Severity of the symptoms was also rated. The interviews were conducted face-to-face at a psychology department at the university (51.5 %), the mother's home (23.5 %), or via telephone (25.0 %). Inter-rater reliability was assessed with Cohen's kappa (k). A sample of 48 mothers and their interviewers filled in acceptance questionnaires after the interview. RESULTS: Good to excellent inter-rater reliability on the levels of current and lifetime regulatory problems (k = 0.77-0.98) were found. High inter-rater agreement was also found for ratings of severity (ICC = 0.86-0.97). Participants and interviewers' overall acceptance ratings of the computer-assisted interview were favourable. Acceptance scores did not differ between interviews that revealed one or more clinically relevant regulatory problem(s) compared to those that revealed no regulatory problems. CONCLUSIONS: The Baby-DIPS was found to be a reliable instrument for the assessment of current and lifetime problems in crying and sleeping behaviours. The computer-assisted version of the Baby-DIPS was well accepted by interviewers and mothers. The Baby-DIPS appears to be well-suited for research and clinical use to identify infant regulatory problems.