Systematic review: Need for high-quality research on occupational therapy for children with intellectual disability.

BACKGROUND: Enabling participation in everyday life and supporting development are essential goals in occupational therapy of children and young people with intellectual disabilities (ID). OBJECTIVE: To gather and evaluate evidence of the effectiveness of occupational therapy interventions for children with ID in terms of participation in everyday life. MATERIAL AND METHODS: A literature search conducted using electronic databases (CINAHL, Cochrane Library, PubMed and EMBASE) from January 2000 to May 2020. Methodological quality was assessed using the Joanna Briggs Institute critical appraisal tools. Quality of evidence was critically appraised with the GRADE. RESULTS: The search yielded 4741 records, of which 15 studies met the inclusion criteria: 3 randomized controlled trials, 3 case-control studies, 2 case series and 7 case reports. The studies were diverse in quality. The evidence is inconclusive because of the limited amount of methodologically robust studies. CONCLUSIONS AND SIGNIFICANCE: Results support the notion that occupational therapy in daily environments for children with ID may enhances participation in everyday activities. Further research with appropriate study designs and outcome measurements is needed. Although the research evidence was limited, the results encourage focussing on occupational therapy for children with ID to enhance participation in school and home environments.

Self-reported Reasons for Changes in Performance of Daily Activities During a 2-Year Multidisciplinary Multiple Sclerosis Rehabilitation.

Background: Few multidisciplinary rehabilitation studies with a heterogeneous design have focused on individuals with multiple sclerosis (MS). This study compared subjective-reported changes in performance and satisfaction with daily activities among moderately and severely disabled individuals with MS during a 2-year, multidisciplinary, group-based, outpatient rehabilitation program comprising education in self-management and compensatory techniques, exercise, and guided peer support. Methods: Thirty-eight adults with moderate disability (Expanded Disability Status Scale [EDSS] score of 4.0-5.5, 74% women, mean age of 48) and 41 individuals with severe disability (EDSS 6.0-8.5, 63% women, mean age of 48) were assessed at baseline and after 12 and 21 months of outpatient rehabilitation using the Canadian Occupational Performance Measure (COPM). Group × time interactions were analyzed using mixed analysis of variance. Participants' explanations of reasons for changes in activity performance were collected via semistructured interviews and analyzed content. Results: Statistically significant improvements in COPM performance and satisfaction scores were reported in both groups from baseline to 21 months of rehabilitation. No significant between-group differences in improvement were observed. The self-reported reasons for improvement were mainly linked to environmental factors. Conclusions: The outpatient rehabilitation program, including 4 themes-cognition, mood, energy conservation, and body control-improved the self-reported performance of patients with MS with moderate and severe disabilities. Environmental factors warrant consideration during rehabilitation.

Uptake of Tele-Rehabilitation in Finland amongst Rehabilitation Professionals during the COVID-19 Pandemic.

The COVID-19 pandemic has challenged rehabilitation professionals to provide therapy through telepractice. The aims of this study were to investigate and compare the uptake of tele-rehabilitation (TR) in Finland amongst different rehabilitation professions during the COVID-19 pandemic as well as potential differences between professions in carrying out TR. In addition, the goal was to explore in more depth therapists' views about the features that work and challenges of TR. A total of 850 therapists in the physio-, occupational-, speech and language-, and psychotherapy professions participated in the survey that included both quantitative and open-ended questions. The results show that 52% of all the therapists who participated in this study did take up TR with all or most of their clients during the first wave of the COVID-19 pandemic. Of all professionals who have carried out tele-rehabilitation during the pandemic, 46% planned to use TR regularly or probably also after the pandemic. There were also clear differences between the professions. Psychotherapists carried out TR during the pandemic and planned to use it also after the pandemic more often than the other professional groups. The qualitative analysis revealed that therapists identified several beneficial but also multiple challenging features of TR. Psychotherapists reported less challenges than other professions. The pandemic has clearly sped up the use of TR in rehabilitation.

A Multiform, Group-Based Rehabilitation Program for Visually Impaired Young People to Promote Activity and Participation. A Pilot Study.

Young people with visual impairment (YPWVI) face several challenges in their everyday lives. However, little is known about interventions that focus on promoting their participation that contributes to health and well-being and is considered the most relevant outcome in rehabilitation. OBJECTIVES: This study investigated the clinical outcomes and acceptability of a new one-year, multiform, group-based rehabilitation program for YPWVI. The aim of the pilot program was to support them becoming more independent and to promote their participation. Rehabilitation consisted of group-meetings in an institutional setting, online group meetings, individually tailored one-on-one guidance, individual online discussions and parents' group meetings. Fifteen young persons with visual impairment were recruited and 14 completed the intervention, six of whom were blind or had severe visual impairment and eight had mild visual loss. METHODOLOGY: The study utilized a mixed methods triangulation design. Clinical outcome measures were goal attainment scaling (GAS) and occupational performance (COPM) completed with qualitative interview data. Focus group interviews with participants and parents were used to evaluate the acceptability of the program. RESULTS: GAS-rated personal goals were widely achieved and the scores of both performance and satisfaction scales of COPM improved. Overall, the rehabilitation program proved to be acceptable. Group-based rehabilitation was deemed very important and it enabled peer support. However, two-day periods of inpatient rehabilitation, proved to be too short, whereas five-day periods were considered to disturb schoolwork. CONCLUSIONS: Group-based multi-form rehabilitation for YPWVI can have a positive impact on activity and participation of the participants. The program can support independence and the achievement of rehabilitation goals. The group format was applauded for providing social support and company. The program required some structural modifications.

Predictors of Participation and Autonomy in People With Multiple Sclerosis.

IMPORTANCE: Because multiple sclerosis (MS) affects many life areas, it is important to know how participation and autonomy are associated with the perceived impact of MS on everyday life. OBJECTIVE: To investigate how perceived quality of life, disease impact, gender, and disease severity predict participation and autonomy in people with MS. DESIGN: Cross-sectional study in which structural equation modeling was used to evaluate relationships between measured variables. SETTINGS: Outpatient clinics in three areas and one inpatient rehabilitation center in Finland. PARTICIPANTS: Convenience sample of 194 people with MS. OUTCOMES AND MEASURES: Participants completed the Impact on Participation and Autonomy (IPA), the World Health Organization Quality of Life-Brief measure (WHOQOL-BREF), and the Multiple Sclerosis Impact Scale (MSIS-29). The Expanded Disability Status Scale (EDSS) was administered by a neurologist. RESULTS: The final model showed good fit to the data. All the goodness-of-fit indexes except χ² supported the model, χ²(30, N = 194) = 46.729, p < .026; comparative fit index = .983; Tucker-Lewis index = .969; root mean square error of approximation = .054; standardized root mean square residual = .039. Quality of life (WHOQOL-BREF) and the impact of multiple sclerosis (MSIS-29) were the main predictors of participation and autonomy. Disease severity influenced only the IPA Autonomy Indoors domain. Gender was not associated with participation and autonomy. CONCLUSION AND RELEVANCE: Experiences of participation and autonomy appear to be closely associated with perceived quality of life and impact of the disease. Findings support the importance of assessing participation and autonomy and planning interventions using this information. WHAT THIS ARTICLE ADDS: The IPA appears to be an appropriate measure for assessing participation and autonomy and planning occupational therapy interventions for people with MS. In particular, environmental factors affecting participation and autonomy should be considered when planning interventions to promote participation and autonomy.

Feasibility and psychometric properties of the Finnish version of the measure of processes of care for adults.

OBJECTIVE:: To assess the psychometric properties and feasibility of the Finnish translation of the measure of processes of care for adults (MPOC-A) when used in an inpatient rehabilitation setting. DESIGN:: A feasibility study. SETTINGS:: Inpatient rehabilitation settings. SUBJECTS:: A total of 858 people with severe neurological disabilities, musculoskeletal problems, and mental disorders were recruited to the study. METHODS:: The MPOC-A questionnaire is a self-administered questionnaire consisting of 34 items in five-factorial domains. The construct validity of the translated questionnaire was evaluated using confirmatory factor analysis. To compare the fit of the model to the fit of the independent null-model Comparative Fit Index was used. Internal consistency for the total scale and subscales was calculated using Cronbach's alpha reliability coefficient. RESULTS:: A total of 554 people, mean age 52 years (SD = 9), participated in the study. Most of the responders had musculoskeletal problems ( n = 328, 57%). The respondents rated the client-centeredness in rehabilitation service as moderate ( m = 5.40, SD = 0.81). The five-factor and the one-factor model fitted the data well according to all three indices. Internal consistency showed high reliability between the one-factor and five-factor models for all except one domain (0.49-0.93). The mean for Person Infit for the people with neurological disabilities was higher than for the other two groups ( m = 1.77, SD = 1.32) indicating less predictable response patterns in this group. CONCLUSION:: The results confirm the appropriate psychometric properties of the Finnish version of the MPOC-A, especially for people with musculoskeletal problems and those with mental health disorders.

Perceived burden among spouse, adult child, and parent caregivers.

AIMS: To identify what factors are associated with the caregiver burden of spouse caregivers, adult child caregivers, and parent caregivers. BACKGROUND: Caregivers often feel stressed and perceive caregiving as a burden. The caregiver burden has been little studied from the perspective of the personal relationship between caregiver and care recipient. DESIGN: Cross-sectional study. METHODS: A random sample of 4,000 caregivers in Finland was drawn in 2014 and those who remained either spouse, adult child, or parent caregivers at data collection were included in the analysis (N = 1,062). Data collection included recipients' characteristics. Caregivers' perceived burden was measured using the Caregivers of Older People in Europe index. General linear models were used to explain perceived caregiver burden. RESULTS: Care recipients' low level of cognitive function was associated with greater perceived burden. Higher quality of support was associated with lower perceived burden among female and male spouse caregivers, daughter caregivers, and mother caregivers. Low cognitive function explained 3-6% and high quality of support 2-5% of the total variation in the burden explained by the models, which ranged between 45-55%. CONCLUSION: Because cognitive challenges of care recipient are associated with greater perceived burden and high quality of support with lower burden among most of the caregiver groups, high-quality tailored nursing interventions will be needed especially for the caregivers of the most frail care recipients.

Reliability and validity of the COPE Index among caregivers of disabled people.

AIM: To study the reliability and validity of the Carers of Older People in Europe (COPE) Index among caregivers of disabled people of different ages. METHODS: A cross-sectional design of Finnish caregivers (n=1117). Exploratory factor analysis (EFA) was performed separately on samples of three different age groups, and the internal consistencies of the subscales were investigated. RESULTS: Three factors were identified; Cronbach's alpha was 0.83-0.86 for negative impact and 0.77-0.78 for quality of support, indicating good internal consistency. The third factor, positive value, was less consistent across the age groups (α<0.66). CONCLUSIONS: The COPE Index is a valid and reliable screening tool to measure negative impact and quality of support of caregivers of disabled people. Further research is needed to develop the COPE Index to more precisely measure positive value of the caregiving process.

Psychometric evaluation of the Finnish version of the impact on participation and autonomy questionnaire in persons with multiple sclerosis.

OBJECTIVE: The objective of this study was to evaluate the psychometric properties of the impact on participation and autonomy (IPA) questionnaire. The Finnish version of IPA (IPAFin) was translated into Finnish using the protocol for linguistic validation for patient-reported outcomes instruments. METHODS: A total of 194 persons with multiple sclerosis (MS) (mean age 50 years SD 9, 72% female) with moderate to severe disability participated in this study. A confirmatory factor analysis (CFA) was used to confirm the four factor structure of the IPAFin. The work and educational opportunities domain was excluded from analysis, because it was only applicable to 51 persons. Internal consistency was investigated by calculating Cronbach's alpha. RESULTS: CFA confirmed the construct validity of the IPA (standardized root mean square residual (SRMR) = 0.06, comparative fit index (CFI) = 0.93, Tucker-Lewis index =0.93, root mean square error of approximation (RMSEA) = 0.06), indicating a good fit to the model. There was no difference in the models for females and males. Cronbach's alpha for the domains ranged between 0.80 and 0.91, indicating good homogeneity. CONCLUSIONS: The construct validity and reliability of the IPAFin is acceptable. IPAFin is a suitable measure of participation in persons with MS.

Young persons with visual impairment: challenges of participation.

OBJECTIVE: To describe the challenges to activity and participation faced by young people with visual impairment within the framework of the International Classification of Functioning (ICF). METHODS: 14 young persons (aged 16-22 years) with visual impairment and their parents (n = 22) participated in the study. The Canadian Occupational Performance Measure (COPM) was used to describe challenges of participation as perceived by the young persons themselves. Individual interviews with the young persons and their parents were used to investigate in more depth the challenges the young persons face with regard to participation. RESULTS: Young persons with visual impairment face challenges to participation most frequently with regard to mobility, domestic life, interpersonal interaction and relationships, major life areas, and leisure activities. The environment in which they live has a central role as a barrier or facilitator of participation. CONCLUSIONS: The challenges related to activities and participation that young persons with visual impairment face are diverse. It is important that these challenges are assessed individually and with the help of subjective measures. Serving as a broad framework for classifying the data, the ICF proved to be a useful tool, but used strictly at category level it may limit the coding of data and narrow interpretation.

What components of rehabilitation are helpful from the perspective of individuals with multiple sclerosis?

PURPOSE: To investigate the helpful components of rehabilitation from the point of view of people with multiple sclerosis (MS). METHODS: Sixteen focus groups were conducted for 68 adults with MS, who were 6 months through their 2-year multi-professional group-based out-patient rehabilitation programs in three regions of Finland. Data were analyzed using qualitative inductive content analysis combined with counts of the coded data. RESULTS: Participants described 20 helpful components of rehabilitation that were clustered to themes of the rehabilitee himself/herself, structures of everyday life, information, activity, environmental interventions, social relationships and support. The most frequently described components of the seven main themes were peers, advice, physical exercise, assistive technology and home adaptations, and personal responsibility. CONCLUSIONS: The helpful components of both in-patient and out-patient rehabilitation that are of particular importance to people with MS are diverse and show the relevance of ICF in rehabilitation and the need for a comprehensive view in rehabilitation. The importance of peers and peer support should be taken into account in rehabilitation planning and related recommendations. The findings show that helpful rehabilitation for people with MS is not a set of mechanistic interventions but requires good social relationships and support. Implications for Rehabilitation Helpful components of rehabilitation for people with MS are diverse and show the need for a comprehensive and individual view in rehabilitation. Professionally guided peer support should be offered as a part of rehabilitation. Interventions related to assistive technology and home adaptations should be an obvious part of rehabilitation. It is important to support people with MS to preserve identity as an active person and to take personal responsibility in their own rehabilitation.

The activities and participation categories of the ICF Core Sets for multiple sclerosis from the patient perspective.

PURPOSE: To validate the activities and participation components of The International Classification of Functioning, Disability and Health (ICF). METHODS: In this cross-sectional study, 113 Finnish community-dwelling persons with MS were assessed using a semi-structured interview provided by the Canadian Occupational Performance Measure (COPM) to capture participants' self-perceived problems in everyday activities and participation. Problems were linked to the ICF categories. RESULTS: Participants identified 527 of the most important occupational performance problems. They covered all chapters of the ICF Activities and Participation components. Forty-one categories out of a total 53 ICF activities and participation categories of the Comprehensive ICF Core Set and four out of five categories of the Brief ICF Core Set were reported on by the participants. The most common category in this sample, 'd920 Recreation and leisure' (145 problems/27.5%), is not included in the Brief ICF Core Set. CONCLUSIONS: Most, but not all, ICF activities and participation categories of the ICF Core Sets for MS could be confirmed from the perspective of persons with MS. It is worth considering to add category 'd920 Recreation and leisure' to the Brief ICF Core Set.

Rehabilitation planning for children and adolescents with cerebral palsy.

OBJECTIVE: To explore the types of procedures and practices in rehabilitation planning for children with cerebral palsy and how multidisciplinary team members experience them. DESIGN, SUBJECTS, AND SETTING: A qualitative research approach was used. Participants were members of multidisciplinary teams in neuropediatric wards at five university hospitals. METHODS: In order to explore the rehabilitation planning procedure within multidisciplinary teams, focus group interviews were conducted. The interviews were tape recorded and transcribed. Three content areas guided the interviews: goal setting, the different transition phases, and the use of the international classification of functioning, disability and health, child and youth version (ICF-CY). Qualitative content analysis was used to analyze the results. RESULTS: Three themes arose from the focus group discussions; challenging goal setting, transition without routines, and ICF-CY not in use. A family-centered service model had been adopted, but there was no clear procedure in the collaboration with parents. Goal setting was found to be challenging and the concern arose of how to integrate goals into the child's everyday life. There was a lack of systematic planning of the different transition phases. There was also a general variation in the rehabilitation planning procedures due to local and regional differences in practice. The ICF-CY was familiar, but not in formal use in clinical practice. CONCLUSION: There is a need to enhance the procedures and to systematize coordination of services in the rehabilitation process. The ICF-CY framework might help to optimize collaborative goal setting and to structure both procedures and documentation of the rehabilitation plans and goals.

Effects of lower limb prosthesis on activity, participation, and quality of life: a systematic review.

BACKGROUND: Effects presented on the use of assistive devices such as prosthesis are often based on laboratory findings (i.e. efficacy). OBJECTIVES: To summarise and evaluate findings from studies on effectiveness of lower limb prostheses for adults in real life contexts, primarily in terms of activity, participation, and quality of life (QoL) and secondarily in terms of user satisfaction, use/non-use, and/or cost-effectiveness. STUDY DESIGN: Systematic review. METHODS: We included controlled studies and non-controlled follow-up studies including both baseline and follow-up data. Using 14 different databases supplemented with manual searches, we searched for studies published from 1998 until June 2009. RESULTS: Out of an initial 818 identified publications, eight met the inclusion criteria. Four studies reported on the effectiveness of a microprocessor-controlled knee (MP-knee) compared to a non-microprocessor-controlled knee (NMP-knee). Results were inconsistent except for quality of life and use/non-use, where the authors reported an improvement with the MP-knee compared to the NMP-knee. The remaining four studies included a diversity of prosthetic intervention measures and types of endpoints. CONCLUSIONS: Overall, there was an inconsistency in results and study quality. This review highlights the need for high-quality research studies that reflect the effectiveness of different prosthesis interventions in terms of users' daily living and QoL. CLINICAL RELEVANCE: Clinical guidelines are important to every practitioner. Information on expected effectiveness from assistive devices should be well founded and contain both facts about the device quality and its contribution to users' daily lives. Thus, studies based on users' experiences from prosthetic use in everyday life activities are of great importance.

Activity and participation, quality of life and user satisfaction outcomes of environmental control systems and smart home technology: a systematic review.

OBJECTIVE: To examine activity and participation, quality of life, and user satisfaction outcomes of environmental control systems (ECSs) and smart home technology (SHT) interventions for persons with impairments. METHOD: A systematic review. Seventeen databases, three conference proceedings, and two journals were searched without language or study design restrictions covering the period January 1993 - June 2009. Reviewers selected studies, extracted data, and assessed the methodological quality independently. RESULT: Of 1739 studies identified, five effect studies and six descriptive studies were included. One study was on SHT and the remainder on ECS; functionalities were overlapping. The studies varied in most aspects, and no synthesis could be drawn. However, ECS/SHT tended to increase study participants' independence, instrumental activities of daily living, socialising, and quality of life. Two studies showed high user satisfaction. The level of evidence was regarded as low, mainly due to small study sizes, lacking confounder control, and a majority of descriptive studies. CONCLUSION: Due to few and small studies and study diversity, it was not possible to determine whether ECS/SHT have positive outcomes for persons with impairment, even though the technologies seem to be promising. High quality outcomes studies such as randomised controlled trials, when feasible, and large longitudinal multi-centre studies are required.

Mobility devices to promote activity and participation: a systematic review.

OBJECTIVE: To determine the effectiveness of mobility device interventions in terms of activity and participation for people with mobility limitations. DESIGN: Systematic review. Search of 7 databases during the period 1996 to 2008. METHODS: Controlled studies and non-controlled follow-up studies were included if they covered both baseline and follow-up data and focused on activity and participation. Study participants had to be aged over 18 years with mobility limitations. Mobility device interventions encompassed crutches, walking frames, rollators, manual wheelchairs and powered wheelchairs (including scooter types). Two reviewers independently selected the studies, performed the data extraction, and 4 reviewers assessed the studies' methodological quality. Disagreements were resolved by consensus. RESULTS: Eight studies were included: one randomized controlled trial, 4 controlled studies, and 3 follow-up studies that included before and after data. Two studies dealt with the effects of powered wheelchair interventions and the other studies with various other types of mobility device. Two studies were of high, internal and external methodological quality. Interventions were found to be clinically effective in terms of activity and participation in 6 studies. The results did not, however, give a unanimous verdict on the effectiveness of mobility devices in enhancing the activity and participation of mobility impaired people. CONCLUSION: Interventions and outcome measurement methods varied between the studies; consequently, it was not possible to draw any general conclusions about the effectiveness of mobility device interventions. However, evidence was found that mobility devices improve users' activity and participation and increase mobility. A lack of high-quality research hampers conclusions about effectiveness. More original, well-designed research is required.

Towards an instrument targeting mobility-related participation: Nordic cross-national reliability.

OBJECTIVE: To investigate test-retest reliability and internal consistency of a new instrument for evaluation of mobility device interventions. MATERIAL AND METHODS: The instrument comprised 4 scales and one summed index. Two test-retest interviews involved 147 mobility device users (mean age 60 years) with a broad range of functional limitations, living at home. RESULTS: For 2 scales and the summed index the reliability was substantial or almost perfect (kappa 0.71/ kappaW 0.76/intraclass correlation coefficient = 0.93; confidence interval = 0.90-0.95). The reliability of one scale was moderate (kappaW 0.41), but after reduction of grades and combination with another scale, it was substantial (kappaW 0.66). The reliability of the fourth scale was moderate (kappaW 0.55). The internal consistency of 3 scales varied from alpha 0.63 to 0.76. CONCLUSION: Even though the test-retest reliability of all but one of the scales of the new instrument was substantial to almost perfect, this study demonstrated that revision is required. The challenges identified were probably due to the highly complex relationship between outdoor participation while using mobility devices and accessibility to the outdoor physical environment. Thus, based on the results of this study the instrument will be revised and subsequently launched as the "Nordic mobility-related participation outcome evaluation of assistive device intervention" (NOMO instrument). More research on the concept of mobility-related participation and the psychometric qualities of the instrument is required.

Play assessment for group settings: a pilot study to construct an assessment tool.

The Play Assessment for Group Setting (PAGS) was constructed to measure children's play performance. The study was undertaken with 93 children aged from 2 to 8 years to examine whether the items of the PAGS construct a unidimensional scale that can be used to measure children's play ability. The internal scale validity and the person response validity of the PAGS were investigated by examining the goodness-of-fit of the play items and children's play performance to the many-faceted Rasch model for the PAGS. In total, 46 of the 51 play items demonstrated acceptable goodness-of-fit. Of the 93 children, 90.3% demonstrated acceptable goodness-of-fit on the scale of play items. Overall, the results support both the scale and person response validity for the PAGS, as well as providing preliminary evidence that the PAGS can be used for a more detailed evaluation of children's abilities in play performance within natural day-care contexts. Further research is needed to examine other aspects of the validity and reliability of the PAGS measures.