Environmental barriers perceived by the Finnish population with spinal cord injury: a cross-sectional survey.

STUDY DESIGN: Cross-sectional survey of the Finnish population with spinal cord injury (SCI). OBJECTIVES: To explore the frequencies of perceived environmental barriers (EB) that made participation harder for the Finnish population with SCI and to compare the occurrence of perceived EBs by gender, age, time since injury, and injury severity. SETTING: Participants were recruited from the registers of the three SCI outpatient clinics responsible for the lifelong care of people with SCI in Finland. METHODS: The self-administered Nottwil Environmental Factors Inventory Short Form (NEFI-SF) collected in the Finnish Spinal Cord Injury Study (FinSCI) (n = 1772) was used. Nonparametric tests and multinomial logistic regression models were utilized. RESULTS: 880 individuals responded to the NEFI-SF items (response rate 50%). Climate was perceived as a barrier by 72% and a serious one by 44% of the respondents. The rates regarding public access were 59% and 24%, private home access 46% and 18%, and long-distance transport 45% and 20%. Four out of ten respondents reported that finances, lack of assistive devices for short-distance transport, and political decisions restricted their participation. The NEFI-SF total scores were higher (meaning more perceived restrictions by EBs) for those more severely injured. CONCLUSIONS: Climate, access to public and private places, challenges with transport, finances, and political decisions were the EBs most frequently perceived to restrict participation by the Finnish population with SCI. Most EBs that were prominent causes of restrictions are modifiable. Greater accessibility to the built environment, equal services to all, and positive special treatment could reduce their effects.

How to adopt technologies in home care: a mixed methods study on user experiences and change of home care in Finland.

BACKGROUND: There is a need for better adoption of technology to meet the needs of home care professionals, older people, and informal caregivers. METHODS: Mixed methods were used to describe and analyse quantitative and qualitative data in a Finnish governmental programme called KATI. The study was three-fold: it 1) listed what kinds of technologies were piloted and deployed in a national study, 2) provided information from the perspectives of home care professionals about requirements to use technology by using focus-group interviews, and 3) assessed experiences of how the adoption of technology changes work and work processes over time by using repeated surveys. Informants in interviews (n = 25) and surveys (n = 90) were home care professionals, who also described the perspectives of older people and informal caregivers. The conceptual models framing the study were adapted from the Technology Acceptance Model and DirVA PROVE-IT. RESULTS: There were 80 technology pilots, in which variety of technologies were followed in home care. Familiarity with, commitment to and understanding of technology benefits were considered to be requirements for the technology to be used. The adoption of technology provided new skills and information about older people's wellbeing, realisation of treatment and new possibilities in home care. It developed new procedures to focus on older people's needs and motivated professionals by gained concrete aid. It enabled them to leave out some concrete procedures as unnecessary. On the other hand, there were also pessimistic and negative experiences when technology use provided nothing new or did not change anything. CONCLUSIONS: The adoption of technology is dependent on the technology and its integration into the prevailing service practice. When they both work, it is possible to leave out unnecessary procedures in care, allocate resources and save time. It is possible to be aware of older people's safety and how they cope at home, find new ways to get involved in older people's lives, gain insight, and make changes at work. Continuous on-site training, modifications in service practices and communication throughout organisations is needed.

Factors associated with use of wearable technology to support activity, well-being, or a healthy lifestyle in the adult population and among older adults.

The use of wearable technology, which is often acquired to support well-being and a healthy lifestyle, has become popular in Western countries. At the same time, healthcare is gradually taking the first steps to introduce wearable technology into patient care, even though on a large scale the evidence of its' effectiveness is still lacking. The objective of this study was to identify the factors associated with use of wearable technology to support activity, well-being, or a healthy lifestyle in the Finnish adult population (20-99) and among older adults (65-99). The study utilized a cross-sectional population survey of Finnish adults aged 20 and older (n = 6,034) to analyse non-causal relationships between wearable technology use and the users' characteristics. Logistic regression models of wearable technology use were constructed using statistically significant sociodemographic, well-being, health, benefit, and lifestyle variables. Both in the general adult population and among older adults, wearable technology use was associated with getting aerobic physical activity weekly according to national guidelines and with marital status. In the general adult population, wearable technology use was also associated with not sleeping enough and agreeing with the statement that social welfare and healthcare e-services help in taking an active role in looking after one's own health and well-being. Younger age was associated with wearable technology use in the general adult population but for older adults age was not a statistically significant factor. Among older adults, non-use of wearable technology went hand in hand with needing guidance in e-service use, using a proxy, or not using e-services at all. The results support exploration of the effects of wearable technology use on maintaining an active lifestyle among adults of all ages.

Facilitators and barriers in the rehabilitation process described by persons with spinal cord injury: a deductive-inductive analysis from the Finnish spinal cord injury study.

BACKGROUND: This study aimed to determine the factors that promote and facilitate rehabilitation as well as challenges and possible barriers perceived by people with spinal cord injury (SCI). MATERIALS AND METHODS: This study was part of a larger, mixed-method Finnish Spinal Cord Injury (FinSCI) study. We interviewed 45 persons with SCI representing participants from the FinSCI study and used a qualitative approach and a deductive-inductive content analysis to analyse the data. RESULTS: We identified 28 facilitators and 19 barriers in the rehabilitation process. The majority of the facilitators and barriers were related to the rehabilitation planning phase. There were more barriers than facilitators in applying for and accessing treatment or rehabilitation and during the implementation of rehabilitation. Facilitators consisted of successful, realized, or planned treatments or rehabilitation events; clear goals; multidisciplinary teamwork; support and monitoring in various changing situations; and the rehabilitees' own capabilities and activities, among other things. The barriers included delays, challenges and deficiencies in the planning and implementation of treatment or rehabilitation; the lack of different skills; and resources of rehabilitation professionals; and different personal factors, which made the rehabilitation process cumbersome. CONCLUSIONS: Good communication and interaction between stakeholders are crucial for the progress of rehabilitation.

20 Years of ICF-International Classification of Functioning, Disability and Health: Uses and Applications around the World.

The International Classification of Functioning Disability and Health (ICF) was approved in 2001 and, since then, several studies reported the increased interest about its use in different sectors. A recent overview that summarizes its applications is lacking. This study aims to provide an updated overview about 20 years of ICF application through an international online questionnaire, developed by the byline authors, and sent to each World Health Organization Collaborating Centers of the Family of International Classifications (WHO-FIC CCs). Data was collected during October 2020 and December 2021 and descriptive content analyses were used to report main results. Results show how, in most of the respondent countries represented by WHO-FIC CCs, ICF was mainly used in clinical practice, policy development and social policy, and in education areas. Despite its applications in different sectors, ICF use is not mandatory in most countries but, where used, it provides a biopsychosocial framework for policy development in health, functioning and disability. The study provides information about the needs related to ICF applications, that can be useful to organize targeted intervention plans. Furthermore, this survey methodology can be re-proposed periodically to monitor the use of the ICF in the future.

Functional independence in the Finnish spinal cord injury population.

STUDY DESIGN: A cross-sectional survey of the Finnish population with spinal cord injury (FinSCI database). OBJECTIVES: To describe the functional independence of the population with spinal cord injury (SCI) in Finland and to identify how generic and lesion characteristics affect their functional independence. SETTING: The participants were recruited from the registers of three SCI outpatient clinics responsible for lifelong follow-up and care for people with SCI in Finland. METHODS: The data were retrieved from FinSCI (n = 1772). The response rate was 50% (n = 884). The Spinal Cord Independence Measure-Self Report (SCIM-SR) was used. The data were analyzed with univariate testing, factor analyses, and multiple linear regression models. RESULTS: The median (percentiles 25; 75) SCIM-SR total score was 76.0 (58.8; 89.0), and the score was 18.0 (13.0; 20:0) for the self-care sub-scale, 33.0 (25.0; 39.0) for the respiration and sphincter management sub-scale and 29.0 (16.0; 36.8) for the mobility sub-scale. The higher the neurological level in groups AIS A, B, and C, the lower the functional ability. Group AIS D at any injury level had the highest level of functional ability. Age and the number of years since injury negatively influenced the SCIM-SR scores for every sub-scale. CONCLUSION: Based on the International Spinal Cord Injury Core Data Set, the severity of SCI can differentiate persons with SCI according to their functional ability. The results suggest that SCI affects individuals' health more than ageing alone does, thereby reducing the functional ability and independence of persons with SCI over time.

Prevalence of comorbidities and secondary health conditions among the Finnish population with spinal cord injury.

STUDY DESIGN: A cross-sectional study. OBJECTIVES: To explore the prevalence of comorbidities, secondary health conditions (SHCs), and multimorbidity in the Finnish population with spinal cord injury (SCI). SETTING: The data were collected from the Finnish Spinal Cord Injury Study (FinSCI). Participants were identified from three SCI outpatient clinics responsible for the lifelong follow-up of persons with SCI in Finland, (n = 884 participants, response rate; 50%). METHODS: The FinSCI-questionnaire included a question from the National Study of Health, Well-being, and Service (FinSote) for screening 12 comorbidities. The reference data of the general population for that question were received from the Finnish Institute for Health and Welfare. The Spinal Cord Injury Secondary Condition Scale (SCI-SCS) was used to screen 16 SHCs. The data were analysed with univariate testing and multivariable negative binomial regression modelling. RESULTS: The most common comorbidities were high blood pressure/hypertension (38%), back problems (28%), and high cholesterol (22%). The most common SHCs were joint and muscle pain (81%), muscle spasms (74%), chronic pain (71%), and bowel problems (71%). The prevalence of comorbidities was highest among persons aged ≥76 years (mean; 2.0; scale range; 0-12). The prevalence of SHCs was highest in the severity of SCI group C1-4 AIS A, B, and C (mean; 8.9; scale range; 0-16). CONCLUSIONS: Further research on geriatrics in SCI, non-traumatic SCI, and knowledge of the needs of persons with cervical lesion AIS A, B, or C is required, due to the fact that the prevalence of multimorbidity is high in these groups.

Physical health among the Finnish spinal cord injury population according to the Patient Reported Outcome Measurement Information System (PROMIS®).

OBJECTIVE: The aim of this study is to assess the physical health in the Finnish Spinal cord injury (SCI) population using the Patient Reported Outcome Measurement Information System (PROMIS®) and make a comparison to the general United States (US) population. Furthermore, the aim is to explore the associations between pain interference, pain intensity, sleep disturbance, and fatigue and physical function. DESIGN: Cross-sectional study. This study is part of the Finnish Spinal Cord Injury (FinSCI) community survey study. SETTING: Community, Finland. PARTICIPANTS: 884 persons with SCI. INTERVENTIONS: Not applicable. OUTCOME MEASURES: Physical health was measured with custom Patient Reported Outcome Measure System (PROMIS®) short forms. RESULTS: Higher age and lesion level indicated more severe physical function impairments. Persons ≥46 years exhibited more pain interference symptoms compared to younger participants. On average, the Finnish SCI population had 1.3 SD lower physical function and 0.9 SD higher pain interference T-scores compared to the US general population (P < 0.001). The most significant association was observed between pain interference and physical function (r = -0.364, P < 0.001). CONCLUSIONS: The present study provides a description of the state of physical health in the Finnish spinal cord injury population, as well as the associations between the physical health areas. The results highlight the substantiality of pain management in terms of improving physical function. TRIAL REGISTRATION NUMBER: NCT04649814.

Health-related factors for work participation in persons with spinal cord injury in Finland.

OBJECTIVE: To explore work participation and the health-related factors affecting work participation among the Finnish Spinal Cord injury (FinSCI) study population (n = 884). METHODS: A cross-sectional explorative observational study in the FinSCI community survey applying Patient-Reported Outcomes Measurement Information System (PROMIS®) forms on Social Health and Global Health. Analyses of socio-demographic and injury-related data were performed. RESULTS: Employment among the study population (n = 452) was 26.5%. Physical, Mental, Social and General Health were better in the employed group compared with work-age persons not working. Logistic regression showed that work participation was related to all health domains, but Physical Health and Ability to Participate in Social Roles and Activities in Social Health were the strongest indicators of likelihood of being at work. Paraplegia and young age were associated with increased likelihood of work participation. CONCLUSION: The first national survey among people with spinal cord injury in Finland shows low level of employment. The results suggest that pain, physical function, and ability to participate in social roles should be monitored by health and vocational professionals when assessing a person's likelihood of being in work.

Towards an ICF-based self-report questionnaire for people with skeletal dysplasia to study health, functioning, disability and accessibility.

BACKGROUND: Little is known about the spectrum of everyday challenges that people with skeletal dysplasia face because of their health and functioning. We aimed to identify factors related to health, functioning and disability in people with skeletal dysplasia, and their challenges with accessibility in order to form a self-reported questionnaire for national data collection. The comprehensive musculoskeletal post-acute core set of the International Classification of Functioning, Disability and Health (ICF) was used as a framework. METHODS: An iterative, participatory and qualitative process was used to formulate a questionnaire. Items were searched from Patient-Reported Outcomes Measurement Information System and from other self-report instruments, additional items were formulated using ICF linking rules. Expert panels from the target population assessed the face and content validity in thematic interviews. RESULTS: The questionnaire demonstrated its relevance, comprehensiveness and feasibility for people with skeletal dysplasia. The ICF linkages showed the contents' correspondence to the construct. Expert panels added 15 categories and one on chapter level to the core set and confirmed content validity. The final survey covers 86 ICF categories and 173 ICF-linked items that were grouped to 33 questions. CONCLUSIONS: The content of the questionnaire proved to be sufficiently valid for people with skeletal dysplasia. It can be used to explore their health, functioning, disability and accessibility to develop care and rehabilitation policies, to plan services and to provide information to various parties involved.

ICF Personal Factors Strengthen Commitment to Person-Centered Rehabilitation - A Scoping Review.

Background: The International Classification of Functioning, Disability and Health (ICF) classification is a biopsychosocial frame of reference that contributes to a holistic understanding of the functioning of a client and the factors involved. Personal factors (PFs) are not currently classified in the ICF due to large societal and cultural diversity and lack of clarity in the scope of such factors. Aims: To ascertain which factors in the ICF classification have been defined as PFs in different studies and what conclusions have been drawn on their role in the ICF classification. Methods: The study was a scoping review. A systematic search for articles published in 2010-2020 was performed on the Cinahl, Pubmed, ScienceDirect, and Sport Discus databases. The PFs specified in the articles were classified according to the seven categories proposed by Geyh et al. socio-demographic factors; position in the immediate social and physical context; personal history and biography; feelings; thoughts and beliefs; motives; and general patterns of experience and behavior. Results: The search yielded 1,988 studies, of which 226 met the inclusion criteria. The studies had addressed a wide variety of PFs that were linked to all seven categories defined by Geyh et al. Some studies had also defined PFs that were linkable to other components of the ICF or that did not describe functioning. Approximately 22% (51) of the studies discussed the role of PFs in rehabilitation. Conclusions: The range of PFs in the ICF classification addressed in the reviewed studies is wide. PFs play an important role in rehabilitation. However, according to the reviewed studies, a more precise coding of PFs is not yet warranted.

Functioning and equality according to International Classification of Functioning, Disability and Health (ICF) in people with skeletal dysplasia compared to matched control subjects - a cross-sectional survey study.

BACKGROUND: Skeletal dysplasias are rare disorders often leading to severe short stature. This study aimed to gain new comprehensive information about functioning and equality in people affected by skeletal dysplasia compared to matched controls without skeletal dysplasia. METHODS: Functioning was assessed by questionnaire, which was formed by operationalizing International Classification of Functioning, Disability and Health (ICF) core set's categories into the items according to the ICF linking rules, using primarily Patient Reported Outcomes Measurement Information System PROMIS® - items. RESULTS: Altogether 80 subjects with skeletal dysplasia and 55 age-, gender- and place of residence -matched controls participated. People with skeletal dysplasia experienced more pain (p < 0.001) and the pain interfered more their daily lives (p = 0.037) compared to the controls. They had more problems related to musculoskeletal functions and exercise tolerance, difficulties in mobility, used more assistive products and technology and were more affected by climate and seasonal changes (p < 0.001). They met challenges in self-care, acquisition of goods and services and household tasks (p < 0.001) and in participating in close social relationships, leisure time activities (p < 0.001) and associations and organizational services (p = 0.007). They felt less satisfied with remunerative work (p = 0.003), felt more inequality (p = 0.008), met more negative attitudes of others (p < 0.001) and felt having less support given by family and friends (p = 0.022). They used more social and health services and experienced more dissatisfaction with those. CONCLUSIONS: Our study indicates that skeletal dysplasias restrict functioning extensively and significantly affect daily living. By building accessible environment and improving equal services, functioning could be improved.

Avoiding the Banality of Evil in Times of COVID-19: Thinking Differently with a Biopsychosocial Perspective for Future Health and Social Policies Development.

The COVID-19 pandemic provides the opportunity to re-think health policies and health systems approaches by the adoption of a biopsychosocial perspective, thus acting on environmental factors so as to increase facilitators and diminish barriers. Specifically, vulnerable people should not face discrimination because of their vulnerability in the allocation of care or life-sustaining treatments. Adoption of biopsychosocial model helps to identify key elements where to act to diminish effects of the pandemics. The pandemic showed us that barriers in health care organization affect mostly those that are vulnerable and can suffer discrimination not because of severity of diseases but just because of their vulnerability, be this age or disability and this can be avoided by biopsychosocial planning in health and social policies. It is possible to avoid the banality of evil, intended as lack of thinking on what we do when we do, by using the emergence of the emergency of COVID-19 as a Trojan horse to achieve some of the sustainable development goals such as universal health coverage and equity in access, thus acting on environmental factors is the key for global health improvement.

Correction to: Development and content validity of the Abilitator: a self-report questionnaire on work ability and functioning aimed at the population in a weak labour market position.

It was highlighted that the original article [1] contained an ambiguity in the citation of Reference 2 in the Results section.

Development and content validity of the Abilitator: a self-report questionnaire on work ability and functioning aimed at the population in a weak labour market position.

BACKGROUND: The unemployed have lower work ability and poorer health than the employed. This situation deteriorates when unemployment continues. The long-term unemployed often have co-morbidities and face many other challenges. This increases the need for a multidimensional assessment of work ability and functioning in different service settings. In this study, we describe the development and analyse the content validity of the Abilitator, a self-report questionnaire on work ability and functioning for those in a weak labour market position. METHODS: The Abilitator was developed in 2014-2017. Its construct was assessed by members of academic expert panels (n = 30), practical expert panels of professionals (n = 700) and target group clients (n = 28). The structure and the content of the questionnaire was co-developed in 29 workshops and adjusted twice based on the expert panels' feedback. The Abilitator was also implemented among target group clients (n = 3360) in different services and projects. During its development the Abilitator was linked to the International Classification of Functioning, Disability and Health (ICF). The content validation process followed the guidelines recommended by the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) panel. RESULTS: The construct of the Abilitator combines the multidimensional and biopsychosocial models of work ability and functioning. It also includes aspects of social inclusion and employability. It evaluates social, psychological, cognitive and physical functioning, and the ability to cope with everyday life. The content of these concepts was validated by the academic and practical expert panels. The Abilitator's 79 ICF codes covered 57% of the Generic, 77% of the Brief Vocational Rehabilitation, and 8% of the Minimal Environmental ICF Core Sets. When compared with the Work Ability Index (WAI) and the World Health Organization Disability Assessment Schedule (WHODAS 2.0), the direct equivalences of the ICF codes were 36 and 44%, respectively. CONCLUSION: The Abilitator sufficiently comprehensively covers the relevant aspects to enable the assessment of the overall work ability and functioning of the population in a weak labour market position.

The Effectiveness of Rehabilitation Interventions on the Employment and Functioning of People with Intellectual Disabilities: A Systematic Review.

Purpose This systematic review analyzed the effectiveness of rehabilitation interventions on the employment and functioning of people with intellectual disabilities (ID), as well as barriers and facilitators of employment. Methods This was a systematic review of quantitative, qualitative, and mixed methods studies. The outcomes were employment, transition to the open labor market and functioning. The review included qualitative studies of employment barriers and facilitators. The population comprised people with ID aged 16-68 years. Peer-reviewed articles published in English between January 1990 and February 2019 were obtained from the databases Cinahl, the Cochrane Library, Embase, Eric, Medic, Medline, OTseeker, Pedro, PsycInfo, PubMed, Socindex, and the Web of Science. We also searched Google Scholar and Base. The modified selection instrument (PIOS: participants, intervention, outcome, and study design) used in the selection of the articles depended on the selection criteria. Results Ten quantitative (one randomized controlled, one concurrently controlled, and eight cohort studies), six qualitative studies, one multimethod study, and 21 case studies met the inclusion criteria. The quantitative studies showed that secondary education increases employment among people with ID when it includes work experience and personal support services. Supported employment also increased employment in the open labor market, which sheltered work did not. The barriers to employment were the use of sheltered work, discrimination in vocational experience, the use of class teaching, and deficient work experience while still at school. The facilitators of employment were one's own activity, the support of one's family, job coaching, a well-designed work environment, appreciation of one's work, support form one's employer and work organization, knowledge and experience of employment during secondary education, and for entrepreneurs, the use of a support person. Conclusions The employment of people with ID can be improved through secondary education including proper teaching methods and personal support services, the use of supported work, workplace accommodations and support from one's family and employer. These results can be utilized in the development of rehabilitation, education, and the employment of people with ID, to allow them the opportunity to work in the open labor market and participate in society.

Health, functioning and accessibility among spinal cord injury population in Finland: Protocol for the FinSCI study.

BACKGROUND AND PURPOSE: The purpose of the Finnish Spinal Cord Injury Study (FinSCI) is to identify factors related to the health and functioning of people with spinal cord injury, their challenges with accessibility, and how such factors are interconnected. The International Classification of Functioning, Disability and Health (ICF) is used as a structured framework in the study. DESIGN: Protocol of mixed methods study. RESULTS: Study participants were recruited from all 3 SCI outpatient clinics in Finland. The final target group consists of 1,789 subjects with spinal cord injury. The final questionnaire was formed from 5 different patient-reported instruments. The spinal cord injury-specified instruments are the Spinal Cord Injury Secondary Condition Scale, the Spinal Cord Independence Measure, and the Nottwil Environmental Factors Inventory Short Form. In addition, questions from the following generic instruments were chosen after a selection process: the Patient-Reported Outcomes Measurement Information System, PROMIS®, and the National Study of Health, Well-being and Service, FinSote. Altogether, the final questionnaire covers 64 ICF categories and consists of 151 ICF-linked questions. CONCLUSION: The formulated questionnaire covers widely different aspects of health, functioning and accessibility. The questionnaire results and subsequent interviews will help in developing care and rehabilitation policies and services for people with spinal cord injury.

Psychometric properties of the NOMO 1.0 tested among adult powered-mobility users.

BACKGROUND: The Nordic Mobility Related Outcome Evaluation of Assistive Device Intervention (NOMO 1.0) instrument evaluates the effectiveness of mobility devices in assessing mobility-related participation, captured by three scales (Need for Assistance, Frequency, and Ease/Difficulty) and one index (Participation Repertoire). PURPOSE: This study aimed to investigate a range of psychometric properties of the NOMO 1.0 in a sample of adult powered mobility device (PMD) users. METHOD: Data collected from PMD users ( N = 248) in Denmark, Finland, and Norway as part of a larger study were analyzed using state-of-the-art statistical methods. FINDINGS: The acceptability and applicability of the NOMO 1.0 items were generally within recommended values. Some floor/ceiling effects were found and the reliability was acceptable for only the Frequency scale. The factor analysis identified one component for the Need for Assistance scale and six components of the Frequency scale. IMPLICATIONS: The NOMO 1.0 should be used for research purposes and not for clinical practice. Better reliability should be established for the Need for Assistance and Ease/Difficulty scales prior to further psychometric testing to establish the validity of the NOMO 1.0.

Functioning and Challenges in Equality and Accessibility Among People with Short Stature.

Accessibility is not the same for all of us. This study concerns people with short stature, their functioning and challenges in equality and accessibility in our environment based on average measures.