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Purpose: Employment of young adults with chronic physical conditions entering the labor market after finishing post-secondary education remains behind compared to typically developing peers. The aim of this study is to evaluate changes in their paid employment levels after following a vocational rehabilitation intervention (‘At Work’).

Materials and methods: Participants aged between 16 and 27 years (n = 90) were recruited via rehabilitation physicians and a jobcoach agency and participated in a vocational rehabilitation program. Cochran’s Q and McNemar tests served to test the development of intervention participants’ paid employment over time. Chi-square tests were used to compare intervention participants’ paid employment level with national reference data selected on age and having a self-reported chronic physical condition.

Results: Paid employment level of the intervention cohort significantly increased from 10.0% at baseline to 42.4% at 2-years follow-up (p < 0.001). At 2-years follow-up, their employment rates approached the employment rates of national reference data (42.4% versus 52.9%, p = 0.17).

Conclusion: Starting from a disadvantaged position, the paid employment rate of the intervention cohort substantially increased over time, approaching the employment rate of reference data. ‘At Work’ seems to be appropriate for supporting this specific group who face obstacles to enter the labor market, to find competitive employment.

Aim: Many children with disabilities in low- and middle-income countries do not attend school and one-third are out of school. In order to ensure that education is for all including children with disabilities, research is needed on barriers to schooling to identify targets for intervention. The study will examine the determinants of school achievement among persons with and without disabilities as well as among each type of impairment.

Methods: The study will utilize data from a recent national, representative household survey on living conditions among persons with and without disabilities. The individual level data used in this article comprise 2123 persons with and 2000 persons without disabilities.

Results: The results show that an alarmingly high proportion of persons in Nepal have not accessed formal education, with access being significantly lower among persons with disabilities. While the results may be influenced by the assumed relationship between disability and poverty, results from analyzing the cross-sectional data cannot be conclusive on the influence of disability vs. poverty in determining differences in access and school attainments. Increased environmental barriers, higher age, rural location, and increased levels of disability were found to be associated with lower educational achievement. Pronounced differences in access to education were found between impairment types, with individuals with physical impairments achieving the highest level and individuals with multiple impairments, hearing and mental impairments achieving lowest.

Conclusions: It is necessary both to strengthen the entire educational sector and at the same time allocate resources that will ensure that all children are on board and that particular efforts are implemented to cater for those who are easily side-lined.

Purpose: To find modifiable factors that are related to subjective well-being would be valuable for improving interventions in fibromyalgia. Physical activity, sedentary behaviour, and physical fitness may represent potential areas to optimize treatment regimens. In fibromyalgia, there is a discordance between clinical observations and patient-reported outcomes (objective and subjective assessments). Therefore, the present study aims at analyzing the associations of objective and subjective evaluations of physical activity, sedentary behaviour, and physical fitness with subjective well-being and determine if and how objective and subjective associations differ.

Methods: In this population-based cross-sectional study participated 375 women with fibromyalgia from the al-Ándalus project (Spain). Physical activity, sedentary behaviour, and physical fitness were objectively (accelerometers and performance testing) and subjectively (questionnaires) measured. Participants self-reported their levels of positive affect, negative affect, and life satisfaction.

Results: In the most conservative multivariate analysis, we found independent associations of the objective measures of physical activity with positive affect and life satisfaction and sedentary behaviour with positive affect. No such relationship was seen with subjective measures of the same behaviours. Moreover, we observed that objective and subjective physical fitness evaluations were independent of each other related to subjective well-being.

Conclusions: Independent associations of the objective measures (but not the subjective assessments) of physical activity with positive affect and life satisfaction, and of sedentary behaviour with positive affect were observed. However, objective measures and subjective appraisals of physical fitness appear to be independently related to well-being, which should be considered when developing physical exercise interventions for fibromyalgia.

Objective: To explore the presence of pain, how pain was addressed by physicians and parents, and how pain affected everyday life in young children with cerebral palsy (CP).

Methods: Children with CP, aged 5–10 years, participated in this cross-sectional study. Data were collected from medical records spanning a period of two years and by a standardized parental interview that included six structured questions and the Pain Interference Index.

Results: A total of 118 children, with a mean age of 7.4 years (SD 1.5), participated in the study. The parents of 81% of these children were interviewed. Pain was reported in 52% of the children, and pain was present at all severity levels. The prescription of analgesics was documented in 25% of these children’s medical records. Fifty-nine percent of the children with pain received analgesics from their parents. Pain restricted the children’s everyday lives particularly concerning sleep, school work and being with friends.

Conclusions: Half of this group of young children with CP were reported to have pain. Pain restricted the children's everyday lives and seemed to be under-treated. If pain can be addressed early, the children's everyday lives are likely to be improved.

Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Aim: To conduct a detailed investigation into changes in activity limitations and participation restrictions over 10 years in people with mild, moderate and severe multiple sclerosis.

Methods: This study was a 10-year longitudinal study of 264 people with multiple sclerosis living in Stockholm County, Sweden. Ten-year changes in personal and instrumental activities in daily living were assessed using the Katz Activities in Daily Living Index Extended and participation in social/lifestyle activities using the Frenchay Activities Index.

Results: While people with moderate multiple sclerosis, compared to baseline, demonstrated significantly higher proportions of dependency in most activities of personal and instrumental activities in daily living at the 10-year follow-up, the mild group primarily increased their dependency in instrumental activities and the severe group in personal activities. Significantly higher proportions of the moderate group showed restricted participation in domestic and outdoor activities whereas the mild group only showed restrictions in a few domains of participation. A majority of people with severe multiple sclerosis showed restricted participation in all social/lifestyle activities at baseline and the 10-year follow-up.

Conclusions: Prominent long-term increases in activity limitations and participation restrictions occurred across the spectrum of disease severity but was most pronounced in those more moderately affected.

Purpose: Restrictions to activity and participation in persons with cerebral palsy or spina bifida are often due to both motor and executive dysfunction. Hence methods focusing solely on motor issues are not enough to enhance participation. The Cognitive Orientation to daily Occupational Performance ApproachTM is a performance-based approach offering clients opportunities to create their own strategies to learn skills. The aim of the present study was to explore and describe experiences of the Cognitive Orientation to daily Occupational Performance Approach as reported by young adults with cerebral palsy or spina bifida.

Methods: Qualitative content analysis was used. Semi-structured individual interviews were conducted with the 10 participants aged 16–28, post-intervention and at 6-months follow-up.

Results: The participants described how the Cognitive Orientation to daily Occupational Performance Approach enhanced their self-efficacy. Four categories describing the participants’ experiences emerged: “CO-OP is a different way of learning”, “CO-OP sometimes puts a strain on me”, “CO-OP supports my way of thinking and doing” and “CO-OP boosts me”.

Conclusion: The young adults expressed that the Cognitive Orientation to daily Occupational Performance intervention, although sometimes challenging, was worth the effort because it provided them with an opportunity to master everyday-life problems by using meta-cognitive thinking, which enhanced their self-efficacy.

Purpose: The efficacy of a community-based mentoring program for adolescents with a visual impairment vs. care-as-usual was tested on social participation including satisfaction with social support.

Materials and methods: Adolescents (15–22 years; 46% boys) were randomized to an intervention group with mentors with visual impairment (N = 25), an intervention group with mentors without visual impairment (N = 26), or care-as-usual (N = 25). One-on-one mentoring activities regarded school/work, leisure activities, and social relationships.

Results and conclusions: Multilevel growth modelling revealed no effect of mentoring on changes in social participation compared to the care-as-usual group (participation [95% CI –0.30, 0.21, d = 0.1]; social participation composite [95% CI –0.24, 0.26, d = 0.24]). Mentees matched to mentors with visual impairments increased more on satisfaction with their social support compared to mentees matched to mentors without impairments and the care-as-usual group [95% CI 0.02, 0.49, d = 0.38]. Age, characteristics of the impairment, and number of match meetings were not associated with change in social participation during the mentoring program. This evaluation showed no benefit of mentoring for social participation of adolescents with a visual impairment. The value of mentors and mentees sharing the same disability needs further investigation. This trial is registered in the Netherlands Trial Register NTR4768.

Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients’ needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom.

Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed.

Results: Four themes were identified which can be reflected by the phrases: (1) ‘I stumble’, (2) ‘I struggle’, (3) ‘I feel ashamed’, and (4) ‘I need support’. Balance and gait problems led to limitations in domestic activities, employment, and recreation. ‘Stumbling’ also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided.

Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs.