"Here we are together, at home you are alone" - social interactions and personal engagement during a group-based rehabilitation program for young adults with disability.

PURPOSE: Young adults with disabilities often report feeling alone in their experience of disability. Group-based rehabilitation programs provide opportunities to participate in learning processes and share experiences of living with a disability. The aim of this study was to explore and interpret social interactions and personal processes of engagement and development of young adults with disabilities during a rehabilitation program. METHODS: Fifty-four young adults attending a group-based rehabilitation program at Beitostølen Healthsports Center (BHC) participated in the study. A grounded theory methodology employing ethnographic data enabled an in-depth exploration of the social processes occurring during the rehabilitation stay. RESULTS: The social environment was important to personal processes during the stay. Fundamental to the social processes was a culture defined by opportunities, competence, and involvement of the young adults that promoted feelings of safety and the freedom to challenge themselves. Being with peers with disabilities enabled a sense of community underpinned by a shared understanding. Peers fostered motivation to actively engage in the participation processes, built courage and promoted self-reflection. CONCLUSION: This article contributes to the understanding of the dynamic interactions between social contextual structures and interrelations, and personal processes of engagement and developmental experiences during a group-based rehabilitation program.IMPLICATIONs FOR REHABILITATIONRehabilitation in context of a peer-group was highly valued and made a unique contribution to the rehabilitation experience.Being in a group with peers sharing the experience of disability resulted in a safe learning environment, improving participants' motivation, encouraging them to engage in challenging activities and social interactions.The informal interactions and shared experience of living with a disability promoted self-reflection and improved self-understanding.Being with peers sharing the experience of disability provided opportunities for role modelling and mentoring, inspiring participants as to what might be possible.

"Capturing the magic": identifying the active ingredients of a physical activity participation intervention for children and youth with disabilities.

PURPOSE: This study aimed to define the active ingredients of a participation-focused physical activity intervention for children and youth with disabilities. MATERIALS AND METHODS: An ethnographic approach was employed, triangulating participant observation, interviews and focus groups. Participant recruitment occurred through purposive sampling of staff employed at Beitostolen Healthsports Centre (BHC), and paediatric service providers visiting the centre. Interviews were transcribed verbatim and coded together with observation data. Secondary coding linked data to corresponding categories of the International Classification of Functioning, Disability and Health: Child and Youth version. RESULTS: Thirteen staff from BHC and 7 paediatric service providers participated in the study. Fourteen active ingredients were identified and were characterised at the level of the intervention (k = 8), the organisation (k = 4), and the individual (k = 2). Within the ingredients, 53 unique ICF-CY categories were identified. Twenty-six categories belonged to the ICF-CY component of "environment," and 26 categories to "activities and participation." No categories related to "body functions" or "body structures." CONCLUSIONS: The role of the environment, and specifically support and relationships, may be an essential consideration for enabling physical activity participation. Outcomes may guide program design and implementation to promote and sustain physical activity behaviours for children and youth with disabilities.Implications for rehabilitationThe active ingredients identified in this study may guide the design and implementation of programs to promote and sustain physical activity behaviours of children and youth with disabilities.Leadership qualities and strength-based attitudes may be key characteristics of organisational practice that optimise outcomes for children and families.A "relationship-centred" approach, i.e., a network of children, families, health professionals, peers, mentors, and services in the community, may support children and young people with disabilities to achieve their physical activity participation goals.

How transactional relations contribute to adaptive developmental outcomes when young people with disabilities participate in specially designed group programs - a scoping review.

BACKGROUND: Meta-synthesis can enhance our existing knowledge regarding experiences of participation in group-based programs designed for young people with disabilities. AIM: This study aimed to identify the transactional relations between the social contexts in group programs and meaningful personal experiences and developmental processes for young people with disabilities. METHOD: For this research, 4 electronic data-bases were searched, 3406 citations were reviewed, and 13 qualitative studies describing experiences of participation in specially designed group-based programs from the perspective of young people with disabilities were included. A meta-ethnographic approach was used to synthesise the data, and resulting categories were conceptualised in King et al.'s framework of transactional processes and adaptive development. RESULTS: Nineteen categories across six themes describing: environment, social context, social mechanisms, personal processes, meaningful experiences, and outcomes demonstrated the dynamic interrelation between social context and personal processes. Peer group interaction was essential for exploring capacities and developing strategies. CONCLUSION: This review highlights the important role of the peer group in transferring program experiences into the everyday life contexts of young people with disabilities. It may assist professionals who are considering the use of peer groups when planning participation-focussed programs aiming to facilitate personal development for young people with disabilities.

Rehabilitation Goals and Effects of Goal Achievement on Outcome Following an Adapted Physical Activity-Based Rehabilitation Intervention.

PURPOSE: To explore the goal-setting process carried out at a rehabilitation facility providing adapted physical activity, by 1) identifying goals set by individuals with chronic disabilities, 2) comparing these goals to the negotiated goals set in collaboration with the rehabilitation team and 3) assessing goal achievement and its association with self-reported functioning after 12 months. METHODS: A prospective observational study where adults (18-67 years) admitted to Beitostølen Healthsports Centre (n=151) reported mental and physical functioning measured by the Medical Outcomes Study 12-item Short-Form Health Survey (SF-12) administered at baseline (eight weeks before rehabilitation), admission, discharge and follow-up 12 months after rehabilitation. The participants provided their individual goals for rehabilitation in the admission questionnaire. Individual goals were compared to negotiated goals set by the participants and the rehabilitation team together as part of the goal-setting process at the facility. The goals were linked to The International Classification of Functioning, Disability and Health (ICF) for comparison. Goal achievement was assessed on a 10-point numeric rating scale (NRS) in the discharge questionnaire. The association between SF-12 physical and mental functioning at long-term follow-up and goal achievement was explored. RESULTS: The 293 individual goals and the 407 negotiated goals were most frequently linked to the ICF-component Body Functions. When comparing negotiated to individual goals, negotiated goals were more frequently linked to activities and participation. Goals to wide to be linked to the ICF were less frequent. For 76% of the participants, content of individual goals was captured in negotiated goals. Goal achievement with NRS scores ≥9 points was reported by 66% of the included participants. Goal achievement was a significant predictor for long-term mental functioning (p=0.04). CONCLUSION: Collaboration between participants and health professionals resulted in more specific goals directed towards the activities and participation component. Goal achievement predicted long-term mental functioning following rehabilitation.

ActiveYou I - a new web-based measure of activity preferences among children with disabilities.

BACKGROUND: Children's preferences for activities are one of the most important predictors for participation. Currently no web-based measure of activity preferences exists for children with disabilities. AIM: To develop and investigate feasibility and internal consistency of a new web-based measure of activity preferences, ActiveYou I for children with disabilities. MATERIALS AND METHODS: The ActiveYou I was developed in three steps using a mixed-methods design. A review of the preferred goal activities of 149 children with disabilities was used to identify relevant activities. A pilot version of ActiveYou I was tested with 341 children with disabilities. Semi-structured group interviews and cognitive interviews were conducted with therapists and children with disabilities. RESULTS: Nineteen physical activities were included in the pilot version. The pilot trial resulted in two activities being excluded, and one activity added, leaving the instrument with eighteen activities. Internal consistency was acceptable (Cronbach's α ≥ 0.77). Interviews with therapists and children showed that ActiveYou I included relevant activities and was easy to answer. CONCLUSION: ActiveYou I proves to be a valid and feasible, web-based instrument for mapping activity preferences in children and adolescents with disabilities. SIGNIFICANCE: Preferences are an important mediator for participation; consequently it is essential to seek activities that match the children's preferences.

The coolest I know - a qualitative study exploring the participation experiences of children with disabilities in an adapted physical activities program.

Purpose: The first aim of the study was to obtain a broader understanding of how children 10-13 years old with disabilities experience participation in self-selected physical activities during an intensive group rehabilitation program. A second aim was to explore how new skills and experiences gained from intensive group rehabilitation can be transferred to meaningful participation in local environments.Material and methods: Individual in-depth interviews obtained the perspectives on participation of a purposive sample of eleven children with disabilities. The study applied inductive thematic coding of the content associated with participation followed by deductive analysis.Results: Five main themes were derived; "to learn and to show others new activities", "belonging, solidarity and friendship", "activity and participation enjoyment", "participation on my own terms" and "transfer to the local environment at home". To practice and learn physical activities during intensive group rehabilitation seemed to enhance transferring of meaningful participation to the local environment, and was related to the children's activity competence, preferences and self-efficacy.Conclusions: The rehabilitation stay created a setting where children learned diverse activities together with equal peers, which resulted in mastery, friendship and enjoyment. The children participated on their own terms, and continued to do so in their local environment.Implications for RehabilitationA context of freedom to learn preferred adapted physical activities on children's own terms is important for transferring meaningful participation to local environments.A high intensity rehabilitation program with enough time to try and to learn diverse adapted physical activities is essential to increased activity competence in children with disabilities.Attendance in a group of equal peers provides opportunities to experience new roles and thus strengthens the sense-of-self and creates a feeling of belonging, solidarity, friendship and joy.

'It's important that we learn too': Empowering parents to facilitate participation in physical activity for children and youth with disabilities.

AIM: The actions and behaviors of parents have been identified as key factors that influence a child's participation in physical activity. However, there is limited knowledge of how parents can be supported to embody facilitative roles. This study aimed to explore how an ecological intervention encourages parents of children with disabilities to develop as facilitators, to enable ongoing physical activity participation in a child's local environment. METHODS: A qualitative design using grounded theory was employed. Forty four parents (26 mothers, 18 fathers) of 31 children with a range of disabilities (mean age 12y 6m (SD 2y 2m); 18 males) partaking in the Local Environment Model intervention at Beitostolen Healthsports Centre in Norway participated in the study. Data were derived from the triangulation of semi-structured interviews and participant observation. Data analysis was an iterative approach of constant comparison, where data collection, memo writing, open, axial and selective coding analysis, were undertaken simultaneously. Findings were consolidated into a model describing the central phenomenon and its relationship to other categories. RESULTS: Thematic concepts uncovered in this study describe a social process of parent learning and empowerment, comprising three primary components; (i) active ingredients of the intervention that enabled learning and empowerment to transpire, (ii) parent learning and empowerment as a process, and (iii) related outcomes. CONCLUSION: A family-centered approach, encompassing family-to-family support, may enhance physical activity participation outcomes for children and youth with disabilities.

Enabling physical activity participation for children and youth with disabilities following a goal-directed, family-centred intervention.

BACKGROUND: There is a paucity of research demonstrating the optimisation and maintenance of participation outcomes following physical activity interventions for children and youth with disabilities. AIM: To evaluate changes in physical activity participation in children with disabilities following a goal-directed, family-centred intervention at a healthsports centre, and to identify factors influencing participation following the intervention. METHODS AND PROCEDURES: A mixed methods pre-test post-test cohort design was applied. Recruitment occurred over a 12 month period during standard clinical service provision. The Canadian Occupational Performance Measure (COPM) was administered to children and parents pre (T1) and post-intervention (T2), and at 12 weeks follow-up (T3). Goal Attainment Scaling (GAS) was applied to assess outcomes at 12 weeks follow-up (T2-T3). Qualitative inquiry described barriers to goal attainment at T3. OUTCOMES AND RESULTS: Ninety two children with a range of disabilities (mean age 11.1yr; 49 males) were included in the study. Statistically significant and clinically meaningful improvements in parent ratings of COPM performance and satisfaction of participation goals were observed following intervention. Ratings at 12 weeks follow-up remained significantly higher than baseline, and 32% of children attained their COPM-derived GAS goal. Environmental factors were the most frequent barrier to goal attainment following intervention. CONCLUSION AND IMPLICATIONS: These results provide preliminary evidence for goal-directed, family-centred interventions to optimise physical activity participation outcomes for children with disabilities.

Does adapted physical activity­based rehabilitation improve mental and physical functioning? A randomized trial.

BACKGROUND: Persons with chronic disabilities face a wide variety of problems with functioning that affect their level of physical activity and participation. We have limited knowledge about the effect of adapted physical activity (APA)-based rehabilitation on perceived mental and physical functioning. AIM: The main aim of this study was to evaluate the effect of APA­based rehabilitation compared to waiting­list on perceived mental and physical functioning. Secondly, we wanted to assess whether improvement in self­efficacy, motivation, pain and fatigue during rehabilitation was related to the effect of the intervention. DESIGN: Randomized controlled trial. SETTING: In­patient rehabilitation Center. POPULATION: All subjects above 17 years who were referred by their physician to BHC between July 1, 2010 and August 1, 2012 without major cognitive or language problems were eligible for the study (N.=321). METHODS: Persons above 17 years (men and women) with chronic disabilities who applied for a rehabilitation stay, were randomized to an adapted physical activity­based rehabilitation intervention (N.=304) or waiting­list with delayed rehabilitation. A total of 246 consented and were allocated to four week intervention or a waiting­list control group. The main outcome was physical and mental functioning evaluated four weeks after rehabilitation using the Medical Outcomes Study 12-Item Short­Form Health Survey (SF-12). RESULTS: Compared to waiting­list the adapted physical activity­based intervention improved physical and mental functioning. Improvement in physical functioning during rehabilitation was related to reduced pain, improved motivation and self­efficacy. CONCLUSIONS: The results indicate that an adapted physical activity­based rehabilitation program improves functioning. Improved efficacy for managing disability may mediate the improvement in mental functioning. CLINICAL REHABILITATION IMPACT: Adapted physical activity­based rehabilitation should be considered during the development of rehabilitation strategies for people with chronic disabilities. Motivational and self­efficacy aspects must be addressed when organizing and evaluating rehabilitation programs.

Having Fun and Staying Active! Children with Disabilities and Participation in Physical Activity: A Follow-Up Study.

AIM: This study investigated change in the participation profile of physical activity over 15 months after a three-week intensive rehabilitation that used physical activity as the main intervention. METHODS: The Children's Assessment of Participation and Enjoyment (CAPE) was used in a longitudinal prospective study (pre- and post-design) with three measurements over 15 months. Eighty children with physical disabilities (6-17 years old; mean score 11.1; SD 2.4), some with additional cognitive challenges, completed all three measurements. RESULTS: Participation diversity and intensity of all 55 leisure activities declined significantly over the 15-month period. The largest decline was for children aged between 10 and 13 years. Among physical activities, there was a stable level of participation of the total group, and sub-groups. Boys preferred "active physical activities" to a greater extent, while girls preferred "skill-based activities." Both genders expressed a higher level of enjoyment in their preferred activities according to the Preferences for Activities of Children. CONCLUSIONS: This intervention may have the potential to maintain the level of physical activity among children and youths with disabilities, yet further controlled studies are needed. Gender differences should be taken into consideration to facilitate stable participation in physical activities with a high level of enjoyment.

One-year trajectories of motivation and physical activity in persons with disabilities.

OBJECTIVE: To assess trajectories of autonomous and controlled motivation and physical activity over one year in subjects with chronic disabilities receiving rehabilitation. In addition, to assess whether improvements in motivation and clinical variables during rehabilitation predict physical activity. DESIGN: Prospective interventional design. METHODS: A total of 214 subjects with physical disabilities admitted to a 4-week rehabilitation stay were included in the study. Multi-level models were performed examining the trajectories of autonomous motivation, controlled motivation and physical activity over one year. Changes in motivation, pain, fatigue, physical and mental functioning and self-efficacy (clinical factors) from admission to discharge from rehabilitation were analysed using paired samples t-tests. Multiple linear regressions were applied to evaluate the influence of changes in clinical factors during rehabilitation on the level of physical activity after one year. RESULTS: A significant effect of time on autonomous motivation was observed over one year. Higher exercise efficacy, physical functioning and education predicted a higher level of physical activity. However, improvement in autonomous motivation, self-efficacy, pain, fatigue, mental and physical functioning during rehabilitation did not predict the level of physical activity after 4 weeks or one year. CONCLUSION: Rehabilitation based on adapted physical activity is associated with improvement in autonomous motivation. However, improvement in motivation was not related to short- or long-term effects on physical activity.

Validity and Responsiveness of the Trunk Impairment Scale and Trunk Control Measurement Scale in Young Individuals with Cerebral Palsy.

AIM: This study examines construct validity and responsiveness of the Trunk Impairment Scale (TIS) and Trunk Control Measurement Scale (TCMS) in individuals with cerebral palsy (CP). METHODS: Twenty-six individuals with CP (nine males), 8-29 years (mean age 17.6) with gross motor function corresponding to GMFCS I-IV, participated in three weeks of intensive and varied physical training at a health sports center. Trunk control was assessed with the TIS (includes three subscales) and TCMS (includes three subscales), and gross motor function with the Gross Motor Function Measure 66 item set (GMFM-66-IS), before and after the training period. The GMFM-66-IS was used as a comparison measure. RESULTS: The median score of the TCMS subscale dynamic sitting balance, reaching (DSB-R), increased from 6 to 7 (range: 1-10; p = .031), and there was a median change of 3 points in GMFM-66-IS score (p = .036). There were no significant changes in the TIS. The correlations (Spearman's rho), between the TIS, TCMS, and the GMFM-66-IS (pre-scores), ranged between 0.57 and 0.75 (p< .003). Correlations between change scores (pre- and post-scores) were low, and not statistically significant. However, the TCMS DSB-R change score correlated significantly with hours spent on "trunk-targeted training" like paddling/rowing (rho = 0.66; p = .003) and horseback riding (rho = 0.54; p = .011). CONCLUSIONS: Our results support construct validity of the TIS and TCMS in young individuals with CP, whereas responsiveness could not be documented. However, the correlations between the TCMS DSB-R change score and hours spent on ''trunk-targeted training'' suggest that this subscale may have the potential to be used in intervention studies.

One-year trajectories of mental and physical functioning during and after rehabilitation among individuals with disabilities.

PURPOSE: First, to evaluate the trajectories of physical and mental functioning in individuals with chronic disabilities receiving adapted physical activity-based rehabilitation. Second, to determine whether demographic factors, disability group, pain, fatigue and self-efficacy at baseline influenced these trajectories. RESEARCH DESIGN: A prospective intervention study. METHODS: The study included 214 subjects with chronic disabilities who were admitted to a four-week adapted physical activity-based rehabilitation stay at Beitostølen Healthsports Centre. The subjects completed written questionnaires eight and four weeks before the rehabilitation, at admission to and discharge from the rehabilitation centre and again four weeks and 12 months after discharge. Multilevel models were performed to examine the trajectories of SF-12 physical and mental functioning with possible predictors. RESULTS: Time yielded a statistically significant effect on physical and mental functioning (p < 0.001). Low age (p = 0.002), no more than 2 h of personal assistance per week (p = 0.023), non-nervous system disability (p = 0.019), low pain level (p < 0.001) and high chronic disease-efficacy (p = 0.007) were associated with higher physical functioning. There was a greater improvement in physical functioning for subjects with lower chronic disease-efficacy at baseline (p = 0.036) and with a disability not associated with the nervous system (p = 0.040). Low fatigue (p = 0.001) and high chronic disease-efficacy (p = 0.004) predicted higher mental functioning. There was also a greater improvement in mental functioning for subjects with high fatigue (p =0.003) and low chronic disease efficacy at baseline (p = 0.032). CONCLUSION: Individuals with chronic disabilities who participated in an adapted physical activity-based intervention showed statistically significant increases in both physical and mental functioning across the 12 months after the intervention. The greatest improvement was among subjects with a high level of fatigue and low chronic disease-efficacy, as well as disabilities not associated with the nervous system, which has implications for the target groups in future rehabilitation.

Implementation of ICF in goal setting in rehabilitation of children with chronic disabilities at Beitostolen Healthsports Centre.

PURPOSE: Develop an International Classification of Functioning, Disability and Health (ICF) Code Set, useful in goal oriented rehabilitation of a study population of children with chronic disabilities. METHOD: A triangulation of methods, using an interview to identify the main needs and goals of the study population, and a questionnaire to identify the main problems, with a registration of the frequency within each category. After qualitative and quantitative analyses this resulted in two sets of ICF categories. These two sets were then compared and merged into a proposed ICF Code Set for goal setting. RESULTS: Thirty categories were identified from the interviews and the following linking process. Problems were reported in all suggested categories within the ICF questionnaire, resulting in 49 categories. The comparison of the two sets of categories resulted in a proposed ICF Code Set of 40 categories. CONCLUSIONS: Through a triangulation of methods, we developed a tailored code set for the goal setting process in rehabilitation for children with a disability, taking into account both individual preferences and the health professionals' perspective. Although the external validity is limited, our methodological procedures may have relevance for the implementation of ICF in other clinical settings and populations.

Reliability of the Norwegian version of the Children's Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC).

This study examined test-retest reliability of the Norwegian version of Children's Assessment of Participation and Enjoyment (CAPE), and Preferences for Activities of Children (PAC) in children with and without disabilities. Totally 141 children, 107 typically developing, mean age 11.1, and 34 with disabilities, mean age 14.2 years participated. A cross-sectional, test-retest design was applied. The participants completed CAPE and PAC twice within mean 19 days. Reliability was examined by Chronbach's alpha, intraclass correlation coefficients (ICC), and Kappa statistics. The alpha values for internal consistency varied between 0.53 and 0.87 for the CAPE and between 0.75 and 0.93 for the PAC. ICC coefficients varied from 0.49 to 0.83 for the CAPE and 0.50 to 0.85 for the PAC. Kappa coefficients varied from 0.30 to 0.66. The Norwegian CAPE and PAC demonstrated sufficient measurement properties of internal consistency and test-retest reliability. The reliability of the CAPE, however, was not entirely satisfactory.