Barriers to physical activity participation for adults with intellectual disability: A cross-sectional study.

BACKGROUND: Identifying barriers that can be modified to promote physical activity is important for informing health interventions for adults with intellectual disabilities. OBJECTIVES: Exploring participation in physical activity considering age, sex, living conditions, and health conditions. Further, identifying barriers significantly associated with sedentary activity after adjustment for physical activity correlates. METHODS: A cross-sectional study including physical activity and barrier questions from the POMONA-15 health indicators. Multivariate logistic regression analysis with sedentary activity level as dependent variable. RESULTS: Among 213 participants with intellectual disabilities, 36% reported predominately sedentary activities, 53% light and 11% moderate/vigorous physical activity. Barriers related to sedentary activity after adjustment were transportation, health conditions, mobility impairment, and lack of activities at the day activity centre. CONCLUSIONS: The findings highlight the need to enhance physical activity opportunities at day activity centres, tailor programmes for wheelchair users, and improve access to physical activity facilities for adults with intellectual disabilities.

How can we reach long-lasting inclusive participation for all? A vision for the future.

In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.

How did youth with cerebral palsy perceive participation in everyday life after participating in a periodical intensive rehabilitation program based on adapted physical activity in groups? A qualitative interview study.

PURPOSE: Explore how youths with CP experience participation in everyday life, their experience of having participated in a periodical intensive rehabilitation programme and their expectations for the future. MATERIALS & METHODS: A qualitative design that included semi-structured interviews with 14 youths with CP (mean age 17 years). RESULTS: The qualitative content analysis exposed six themes, (1) Everyday life - to get the pieces of your life to fit together, (2) Participation means inclusion and belonging - the meaning of life, (3) Individual and environmental factors influencing participation, (4) Experience of physical and social activities away from home together with like-minded people, (5) To be continued locally, and (6) You do not know the future, anything can happen - visions for the future. CONCLUSIONS: Participation in everyday life increases the meaning of life but takes energy. Periodical intensive rehabilitation programme enabled youths to try new activities, make friends and increase self-insight in their own strengths and limitations.IMPLICATIONS FOR REHABILITATIONYoung people with cerebral palsy (CP) describe participation as the meaning of life and state that it is essential for inclusion and being able to contribute to societyAdaptation of environmental factors including collaboration across service sectors and capacity building in young people within their preferred life situations appear to be essentialA periodical intensive rehabilitation, including adapted physical activities in groups, is recommended to provide peer learning and mastery experiences in young people with CP.Young people with CP seem to have the same hopes for the future as their typically developing peers.

"I have to obey my pain" - children's experiences of pain burden in cerebral palsy.

PURPOSE: To explore pain experiences of children with cerebral palsy, and how it influences their everyday life. METHOD: Fourteen children with CP between eight and seventeen years old were included, using a purposeful sampling strategy. They had different experiences of pain, and different degrees of physical and cognitive impairments. Sixteen individual semi-structured interviews were carried out, and analyzed using inductive thematic analysis. RESULTS: Data analysis resulted in the main theme "I have to obey my pain" and four themes were identified. Experiences regarding pain varied ("My pain is mine alone"). Both pain itself and the use of cognitive strategies to cope with pain involved a mental struggle ("Pain brings me down"). The children had to make adjustments to manage their pain ("I want to participate, but I have to rest"). The most important help was to be understood, but adults also provided valuable help with interventions like stretching, medication and adjustment of activity levels ("Others can help me"). CONCLUSION: Pain was a determining feature in the lives of these children with CP. The wide variety of experiences and challenges emphasized the need for tailored management strategies developed together with each child and their parents.IMPLICATIONS FOR REHABILITATIONChildren with cerebral palsy had varied experiences of pain, and health professionals need to tailor their pain management approaches to the individual child.Health services should offer pain education to expand children's repertoire of pain management strategies.When a child's pain influences their daily activities, health services must ensure that the school is informed of the child's situation, and able to make necessary adjustments.Health professionals should strive to include children's own descriptions whenever possible to make sure children feel heard and believed.Even children with communicative and cognitive impairments were able to self-report when necessary adjustments in the communication situation were made.

Self-care and hand function in preschool children with unilateral or bilateral cerebral palsy: A cross-sectional study.

AIMS: To describe self-care capabilities among children with cerebral palsy (CP) and explore associations between self-care and hand function for children with unilateral cerebral palsy (UCP) and children with bilateral cerebral palsy (BCP) separately. METHOD: Cross-sectional data on self-care capabilities (Pediatric Evaluation of Disability Inventory, PEDI), manual abilities (Manual Ability Classification System, MACS) and hand use during bimanual performance (Assisting Hand Assessment, AHA; Both Hands Assessment, BoHA) were retrieved from the Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP). Eighty-seven children with CP (UCP, n = 61, mean age 4 years 1 month, SD 1 year 3 months, range 56) or BCP (n = 26, mean age 4 years 4 months, SD 1 year, range 41), classified at MACS level I (n = 26), II (n = 40) or III (n = 21), were included. RESULTS: No significant differences in self-care capabilities were found between children with UCP and children with BCP. Analysis of variance showed significant differences in self-care between MACS levels for the whole group. No significant differences in self-care between MACS levels were observed for children with UCP (p = 0.36), but significant differences were found for those with BCP (p < 0.001). Whereas a small correlation (r = 0.3) between PEDI and AHA scores was found for children with UCP, a large correlation (r = 0.6) was found for those with BCP. Children with BCP with symmetric hand use during bimanual performance (BoHA) had higher PEDI scores than children with asymmetric hand use. CONCLUSION: Though children with UCP and children with BCP who were classified at MACS I-III exhibited similar self-care capabilities, the limited hand use seems to contribute differently between the two groups. The two different measures of hand use exhibit different associations with self-care capabilities for young children with UCP and BCP, respectively, and illustrate the need to treat UCP and BCP as two distinct groups, each requiring tailored interventions according to their specific needs.

"Pain is one piece of a complex jigsaw puzzle" - experiences of raising a child with cerebral palsy who has pain.

Purpose: To explore experiences of parenting a child with CP and pain.Method: Fourteen mothers and one father of children (9-16) with CP were included. All children had pain regularly, but the frequency and intensity of their pain experiences varied. Their motor function varied from GMFCS level I to V. Cognitive abilities varied from normal to moderate cognitive deficits. All children could express themselves verbally. Semi structured individual interviews were carried out, and results were developed using inductive thematic analysis.Results: The analysis resulted in the main theme "My child's pain is just one piece of a complex jigsaw puzzle". The main theme was developed by four mutually exclusive, but related themes: "My child's struggle burdens me", "Pain and CP direct our everyday life", "I want to be in control, but cannot always be" and "We are the only ones who understand the complexity".Conclusion: Parents of children with CP experience pain as one aspect of a bigger picture. They need help and support to cope with their child's pain, and professional helpers need to address the complexity pain is a part of.IMPLICATIONS FOR REHABILITATIONParents of children with cerebral palsy (CP) experience their child's pain as one piece in a jigsaw puzzle, and counseling needs to address the complexity rather than the separate parts of the picture.Health professionals should support parents in evaluation and management of their child's pain, as a feeling of competence in pain management is important to reduce parental stress.Health professionals should inform themselves about the life situation of parents whose child with CP has pain, and encourage them to seek practical support and apply for relevant support schemes that can make their everyday life easier.Parents of children with CP should be encouraged to take part in a diagnosis-specific support group, where they can meet with others in a similar situation, in order to reduce their feeling of being alone with their challenges.

Using mobile health to encourage physical activity in individuals with intellectual disability: a pilot mixed methods feasibility study.

Background: Many individuals with intellectual disability (ID) have a sedentary lifestyle. Few interventions aimed at increasing their level of physical activity (PA) have shown lasting effects. Aim: To assess the feasibility and acceptability of a pilot intervention study using innovative mobile health (mHealth) support systems to encourage PA in individuals with ID. Methods: Nine individuals with ID and a low level of PA, aged 16-36 years, were included in the present convergent triangulation mixed method design. Two mHealth support systems (apps) were developed and tested. PA was measured with a Fitbit smartwatch, accelerometer, the International Physical Activity Questionnaire-Short Form (IPAQ-S), and Goal attainment scaling. Data were collected through online pre-, mid- (4 weeks), and post-intervention (12 weeks) questionnaires and activity trackers. Semi-structured qualitative interviews with participants and/or a family or staff member were held after the 12-week follow-up. Data were analyzed using conventional nonparametric statistics and thematic analyses. Results: The response rate and retention to the trial were 16% and 100%, respectively. Data quality was high, except for missing data from Fitbit activity trackers of approximately 30% from the 4- and 12-week follow-up stages. The feasibility challenges with activity trackers include rashes, size, non-acceptance, and loss of motivation. Participants and family members/staff reported interest in the study theme and were pleased with the data collection method. All but one participant achieved their PA goals. Most participants reported being satisfied with the apps as they were enjoyable or provided a reminder for performing physical and other activities. Social support for PA among family members also increased. However, app support from staff and family members was needed, and apps were not used regularly. Two of nine participants (22%) had increased their PA measured as steps per day with Fitbit at the 12-week follow-up. Conclusions: The acceptability and feasibility of using tailored mobile applications in natural settings to increase PA among adults with ID are promising. This study aligns with previous studies in showing the challenges to increasing PA, which requires the inclusion of family members, staff, and stakeholders. The intervention requires modifications before a randomized controlled trial can be conducted.

Development of Hand Use with and Without Intensive Training Among Children with Unilateral Cerebral Palsy in Scandinavia.

AIM: To describe hand use development in children with unilateral cerebral palsy who did/did not participate in constraint-induced movement therapy (CIMT) before 7 years of age. METHOD: The study included 334 participants (18 months-12 years) who were assessed with 1,565 Assisting Hand Assessments (AHAs) and categorized into no intensive training (NIT), CIMT (18 months-7 years), and Baby-CIMT (<18 months) groups. RESULTS: AHA performance at 18 months (AHA-18) was positively associated with development regardless of training. The CIMT group had lower AHA-18 performance than the NIT group (p = .028), but higher stable limit (p = .076). The age when 90% of development was reached was highest in the CIMT group (p = .014). Although non-significant, the Baby-CIMT group had higher mean curve than NIT and CIMT combined (AHA-18 p = .459, limit p = .477). CONCLUSION: The CIMT group improved more over time than the NIT group. Intensive training extended the window of development, and Baby-CIMT might promote early development.

Health-related quality of life in adolescents with cerebral palsy; a cross-sectional and longitudinal population-based study.

AIMS: The aims of this population-based cross-sectional and longitudinal study were to investigate different aspects of health-related quality of life (HRQoL) in adolescents with cerebral palsy (CP), to define possible changes in HRQoL from childhood to adolescence and to identify factors associated with low HRQoL in adolescence. METHODS: Proxy-reports of 64 adolescents, aged 12-17 years, with bilateral CP in GMFCS levels III-V participating in a surveillance programme, included five of the six domains from the HRQoL instrument Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD): (1) Activities of Daily Living and Personal Care, (2) Positioning, Transfer and Mobility, (3) Comfort and Emotions, (5) General Health and (6) Overall Quality of Life, and the two questions on pain from the Child Health Questionnaire (CHQ). Fifty-eight participants comprised the longitudinal sample. RESULTS: From childhood to adolescence, the mean CPCHILD domain scores decreased slightly in General Health and remained unchanged in the other four domains. In the domain General Health, the number of medications increased, which was the reason for the score decrease. Pain severity increased significantly. Severe motor impairment was associated with low scores in domains 1, 2, 3 and 5, and more severe pain with low scores in domains 2, 3, 5 and 6. A low domain score in childhood was associated with a low score in each corresponding domain in adolescence. INTERPRETATION: An assessment of HRQoL should be included in CP surveillance programmes because this could identify needs for interventions in individuals with severe CP. This study indicates the importance of improved pain management in both children and adolescents with severe CP.

Airway clearance physiotherapy and health-related quality of life in cystic fibrosis.

OBJECTIVE: Airway clearance physiotherapy is recommended in cystic fibrosis, but limited evidence exists to suggest how much treatment is enough. As a secondary analysis of a prior study investigating the safety, efficacy, and participants' perceptions of a novel airway clearance technique, specific cough technique (SCT) compared to forced expiration technique (FET), we aimed to evaluate whether the intervention was associated with changes in health-related quality of life (HRQoL). METHODS: We conducted randomised, controlled individual trials with six adults (N-of-1 RCTs). Each trial included eight weeks of treatment, twice a week, using saline inhalation in horizontal positions, one with SCT and one with FET, in random order. Efficacy was measured by sputum wet weight (g) after each session. Perceived usefulness and preference were self-reported at the end of the study. Lung function was assessed at baseline and at the end of study. HRQoL was measured using the Cystic Fibrosis Questionnaire-Revised (CFQ-R) at baseline (week 1) and at completion of the study (week 8). Individual HRQoL scores (0-100) were coded and analysed using CFQ-R Software Program, version 2.0. RESULTS: Patient-reported outcomes were completed by all subjects. Individual CFQ-R-Respiratory Symptoms Scores (CFQ-R-RSS) showed a positive change, meeting the minimal important difference (MID) ≥ 4 points in five participants and a negative change in one individual. A strong correlation (r = 0.94 (p<0.01) was found between total sputum weight (g) and the positive changes in CFQ-R-RSS, and between changes in lung function and CFQ-R-RSS (r = 0.84 (p = 0.04). CONCLUSION: The airway clearance intervention was associated with clinically meaningful changes in patient-reported symptoms on the CFQ-R in the majority of the participants. This finding warrants further investigation regarding treatment, duration and frequency. A long-term study may reveal beneficial effects on other clinically meaningful endpoints, such as pulmonary exacerbations, high-resolution computed tomography scores and HRQoL. TRIAL REGISTRATION: The study was registered in ClinicalTrials.gov, under the number NCT0 1266473.

mHealth Support to Stimulate Physical Activity in Individuals With Intellectual Disability: Protocol for a Mixed Methods Pilot Study.

BACKGROUND: Several studies have shown that individuals with intellectual disabilities (IDs) have low levels of physical activity (PA), and intervention studies on PA suggest inconsistent evidence. The use of technology as a means of motivation for PA has yet to be extensively explored and needs to be further investigated. OBJECTIVE: We aim to assess the feasibility and acceptability of procedures for an intervention arm in a future trial on mobile health (mHealth) to support PA for individuals with IDs. In addition, we aim to examine how the use of technology can influence motivation for PA among participants, their caregivers, and staff members. METHODS: A mixed methods pilot study of an intervention arm will be carried out in a planned randomized controlled trial (RCT). Ten participants with ID and their caregivers or a staff member will be included. Information will always be provided by a caregiver or a staff member, or participants with ID if possible. Assessments will be carried out at baseline, follow-up after 4 weeks, and 12 weeks, and include questionnaires on PA, social support, self-efficacy, and challenging behavior. PA will be measured with 2 different activity trackers (Fitbit and Axivity) for 1 week at all assessments. Feasibility will be assessed as recruitment and adherence rate, missing data, usability of the motivational mHealth tool, and estimates of effectiveness. Acceptability of study procedures, activity measures, and motivation for participation in PA will be additionally assessed with qualitative methods at the end of the intervention. RESULTS: Enrollment commenced in May 2021. Data collection was completed in March 2022. CONCLUSIONS: This pilot study will evaluate the feasibility and acceptability of study procedures of the intervention arm of a planned RCT to address feasibility issues, improve study procedures, and estimate effectiveness of the study measures. How the use of technology can influence motivation for PA will also be examined, which can help guide and improve future PA interventions involving the use of technology. TRIAL REGISTRATION: ClinicalTrials.gov NCT04929106; https://clinicaltrials.gov/ct2/show/NCT04929106. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/37849.

Pain burden in children with cerebral palsy (CPPain) survey: Study protocol.

Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.

Recurrent pain in adolescents with cerebral palsy: a longitudinal population-based study.

AIM: To investigate the pain characteristics, pain interference with activities of daily living, and use of analgesics in adolescents with cerebral palsy (CP) and compare the results with previous findings. METHOD: Sixty-seven adolescents (median age 14y 4mo, range 12y 2mo-17y, 28 females, 39 males) classified in Gross Motor Function Classification System (GMFCS) levels III to V, who participated in a CP surveillance programme, were assessed on pain measures twice, 5 years apart. Primary caregivers marked recurrent pain sites and graded pain interference with activities of daily living and sleep. Information on pain severity was obtained through two questions from the Child Health Questionnaire (CHQ) and were transformed into a pain score scaled from 0 to 100, where 100 represented no pain. The use of short-acting analgesics was recorded. RESULTS: Over 5 years, the prevalence of recurrent pain, number of pain sites, pain intensity, and pain frequency all increased significantly. The most frequent pain sites were the hip/thigh in GMFCS level V and knee in GMFCS level III. The median CHQ pain score decreased from 60 to 40 (p<0.001). Pain interference with activities of daily living increased (p=0.011) but not for sleep. Twenty-eight of 54 participants with moderate or severe pain (CHQ pain score ≤60) received no short-acting analgesics. INTERPRETATION: In adolescents with CP, pain increased over 5 years despite follow-up in a surveillance programme. For enhanced management of pain, we propose that an algorithm on pain should be included in surveillance programmes.

Exploring two subdimensions of participation, involvement and engagement: A scoping review.

BACKGROUND: The conceptualisation of participation is an ongoing discussion with importance for measurement purposes. The aim of this study was to explore the two subjective subdimensions of participation, involvement and engagement. The purpose was related to measure development within the field of paediatric rehabilitation. METHODS: In a scoping review, following the PRISMA-ScR, the databases MEDLINE, PubMed, Academic Research Complete, PsychINFO, and Business Source Complete were searched for publications that described engagement and/or involvement constructs. RESULTS: Thirty-nine publications met the inclusion criteria. Involvement could be conceptualised as an unobservable state of motivation, arousal, or interest towards a specific activity or product. Building a consensus over different fields of research, engagement can be seen as the individual's behavioural, cognitive and affective investment during role performance. CONCLUSIONS: This scoping review points in a direction that the two subdimensions of participation need to be separated, with involvement being a more stable internal state of interest towards an activity, and engagement referring to the specific behaviour, emotions, and thoughts meanwhile participating in a specific setting. Clear definition of concepts will enhance the development of measures to evaluate rehabilitation interventions in the field of occupational therapy and related fields.

"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.

Participation in a rehabilitation program based on adapted physical activities in Norway: a qualitative study of experiences of immigrant parents and their children with disabilities.

PURPOSE: By exploring immigrant families' experiences of participating in a three-week rehabilitation program focused on adapted physical activity in Norway, this study investigated how beneficial, culturally adapted, and accessible the services were from the families' perspectives. METHODS: A hermeneutic design with semi-structured interviews supplemented by participant observation was applied. Inductive thematic analysis was conducted. RESULTS: Three themes were identified: "learning through participating," "sharing the same experience," and "gaps in service delivery." By participating in physical activities together with their children, parents became aware of their children's capabilities and interests, as well as the available resources. Parents also socialized and exchanged experiences and information with each other. Children learned new skills, became aware of their preferences and capabilities, built friendships, and improved their social skills. However, a lack of cultural adaptation, such as insufficient information, as well as the location of the rehabilitation center, language barriers, and exclusion of siblings affected accessibility of the services to immigrant families. CONCLUSIONS: Although the beneficial aspects of the services were demonstrated, the cultural adaptation and accessibility of the services were limited. Providing flexible and culturally adapted services that meet immigrant families' needs may improve the accessibility of rehabilitation services to immigrant families.IMPLICATIONS FOR REHABILITATIONMaking information available to immigrant families, mapping their resources and needs well before the intervention may improve the accessibility of the services for these families.Rehabilitation professionals need to consider families' perceptions of their own role through the goal-setting process when engaging with families from cultural backgrounds different from their own.When planning the intervention, grounding physical activities in the diverse cultural background of participants may increase immigrant families' sense of belonging and inclusion, and thereby facilitate interaction between families regardless of cultural differences.

"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.

Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

PURPOSE: To explore participation in real-life activities during early childhood, compare children's participation based on motor function and investigate relationships between participation and parental empowerment. METHODS: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12-56 months, GMFCS levels I-IV, MACS levels I-V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal-Wallis tests. A linear mixed model was conducted to explore relationships between child participation and parental empowerment. RESULTS: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations. CONCLUSIONS: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.Implications for RehabilitationFamily and recreational activities represent real-life contexts providing opportunities for interactions and experiences supporting development and learning.Children with CP appreciate a wide range of activities in the home and community, which emphasizes the importance of providing opportunities for such participation in order to fulfill their desires and interests.Child participation appears as complexly influenced by the unique activity setting, motor function and characteristics of the family environment, requiring attention to transactional processes when aiming to explore and promote participation.