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.

"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.

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.

What fits me? Procurement of adapted tricycle for activity and participation.

PURPOSE: To determine which factors are relevant when applying for the most appropriate adapted tricycle for people with disabilities. METHODS: Patients participating in a rehabilitation programme and planning to apply for an adapted tricycle were invited to participate in an observational study. Measurements used were watts when pedalling, 6-minute walk test, the Trunk Impairment Scale, 30 s sit-to-stand test, Oxford Scale of muscle strength and range of motion testing. Participants answered questions about important factors for choice of tricycle. Nonparametric correlation tests were performed using SPSS to investigate relevant associations between test results and tricycle type. RESULTS: The study included 37 participants with a large variety of complex disabilities who applied for 9 different adapted tricycles. Participants ranged in age from 5 to 79 years (M = 24 years, SD = 20), with almost half (49%) under 18 years of age. More than half of the participants (57%) were women. Most participants chose an assistive motor. Participants over 50 years applied for a recumbent tricycle. Answers on questionnaire revealed safety, comfort and mastery as important factors for tricycle choice. CONCLUSIONS: Large variations in personal characteristics and needs indicate that individually tailored assessments are necessary to find the most appropriate tricycle.Implications for rehabilitationLarge variations of characteristics and needs among people with disabilities and tricycle types indicate individual-level analyses are necessary to find the most appropriate one.A large selection of tricycles and support from an experienced professional when testing are success factors for finding the most appropriate tricycle.

Current Physical Therapy Practice in Norway for Children With Cerebral Palsy.

PURPOSE: To investigate to what degree functional physical therapy approaches are implemented in Norway when promoting gross motor skill acquisition in children with cerebral palsy. METHODS: It was a national survey about current practice among Norwegian pediatric physical therapists. The physical therapists chose between 5 predefined approaches developed through practice descriptions by a convenience sample of 55 physical therapists. RESULTS: The distribution of the main approaches were: functional training based on principles of motor learning, training of body functions and structures, manual stimulation of position and movements, addressing environmental factors, and conceptual methods. Working in the North and having more experience predicted less chance of using functional approaches. Most physical therapists frequently used other approaches as a supplement to the main approach, but not conceptual methods. CONCLUSIONS: Functional training based on principles of motor learning has become the method of choice in Norway.

Physical Activity With Tailored mHealth Support for Individuals With Intellectual Disabilities: Protocol for a Randomized Controlled Trial.

BACKGROUND: Individuals with intellectual disabilities (IDs) have lower levels of physical activity (PA) and greater barriers for participation in fitness activities compared with members of the general population. As increased PA has positive effects on cardiovascular and psychosocial health, it is exceedingly important to identify effective interventions for use in everyday settings. Mobile health (mHealth) methods such as motion sensor games (exergames) and smartphone reminders for PA have been explored and found to be promising in individuals with IDs. OBJECTIVE: The purpose of this study is to examine the effectiveness of an individually tailored PA program with motivational mHealth support on daily levels of PA in youth and adults with IDs. METHODS: The trial uses a randomized controlled design comprising 30 intervention participants and 30 control group participants, aged 16 to 60 years, with sedentary lifestyles or low PA levels. While the controls will receive standard care, the intervention aims to increase the level of PA, measured as steps per day, as the primary outcome. Secondary outcome variables are body mass index, blood pressure, physical performance, social support for PA, self-efficacy in a PA setting, behavior problems, and goal attainment. The intervention involves the delivery of tailored mHealth support, using smartphones or tablets to create structure with focus on the communicative abilities of individual participants. Rewards and feedback are provided in order to motivate individuals to increase participation in PA. Participants in the intervention group, their close relatives, and care staff will be invited to participate in a preintervention goal-setting meeting, where goal attainment scaling will be used to select the participants' PA goals for the intervention period. All participants will be assessed at baseline, at 3 months, and at 6 months. RESULTS: Enrollment was planned to start in April 2020 but will be delayed due to the pandemic situation. The main contribution of this paper is a detailed plan to run our study, which will produce new knowledge about tailored mHealth to support PA in individuals with intellectual disabilities. CONCLUSIONS: We expect the new intervention to perform better than standard care in terms of improved PA, improved self-efficacy, and social support for activities. Technology offers new opportunities to promote healthy behaviors. The results of the study will determine the effectiveness and sustainability of a tailored mHealth support intervention to increase PA in youth and adults with IDs. TRIAL REGISTRATION: ClinicalTrials.gov NCT04079439; https://clinicaltrials.gov/ct2/show/NCT04079439. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/19213.

A Mindfulness-Based Stress Reduction Program via Group Video Conferencing for Adults With Cerebral Palsy - A Pilot Study.

Purpose: Adults with cerebral palsy experience challenges related to lifelong disability, such as stress, fatigue, pain and emotional issues. E-health services can be delivered regardless of residence and level of functioning. The aim of this pilot study was to explore the potential benefits and feasibility of a mindfulness-based program delivered to adults with cerebral palsy via group video conferencing. Methods: Six adults with cerebral palsy received an 8 week mindfulness group-based program via video conferencing. A multiple single-case study design was applied, including quantitative and qualitative elements. Pain was assessed 16 times through the study period. Questionnaires were administered to gather data on pain catastrophizing, stress, fatigue, emotional distress, positive and negative affect, and quality of life. A focus group interview addressed experiences with the intervention and the mode of delivery. Results: The participants' pain levels showed varied trajectories. Pain catastrophizing and negative affect were statistically significant decreased. Qualitative data indicated benefits from mindfulness in coping and stress management. The video conferencing delivery was evaluated as feasible, with no major adverse effects. Conclusion: Since the pilot study had a small sample size, potential treatment benefits should be interpreted with caution. However, this pilot study provides important information in the planning of future larger and controlled studies on mindfulness-based interventions programs via video conferencing for adults with cerebral palsy and other persons living with long-term disability.

Early intervention and follow-up programs among children with cerebral palsy in Moldova: potential impact on impairments?

AIM: To study whether early intervention services (EI) and a follow-up program (FU) influence outcomes of children with cerebral palsy (CP) in Moldova. METHODS: Records from 351 children with CP in Moldova born during 2009 and 2010 were retrieved from hospital and orphanage archives between 1 July 2016 and 30 September 2017. We investigated the proportion enrolled in EI and FU at the Early Intervention Centre Voinicel and at the Institute of Mother and Child in 2009-2012. Logistic regression analyses were applied to calculate crude and adjusted odds ratios (OR) with 95% confidence intervals (CI) for outcomes in children enrolled and not enrolled. RESULTS: Among all children with CP, 166 (47%) were enrolled in EI and FU. Of the 51 children born extremely preterm (gestational age ≤ 31 weeks), 46 (90%) were enrolled, compared to 97 (39%) of the 250 children born at term. Among 110 non-walking children with CP, 82 (74%) were enrolled into EI and FU, compared to 84 (35%) of 241 able to walk. There was no difference in outcomes of cognition, communication, vision and hearing impairments between those enrolled or not enrolled in EI and FU. However, the subgroup analyses showed that the risk of contractures was 11 times higher among non-walking children who were not enrolled in EI and FU programs (OR = 10.931, 95% CI 2.328-51.328, p = 0.002). CONCLUSION: In Moldova, EI and FU seem to be offered mostly to extremely preterm and non-walking children with CP. The results indicate a decreased risk for contractures in these children.

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.

Use of botulinum toxin A in children with cerebral palsy. / Bruk av botulinumtoksin A til barn med cerebral parese.

BACKGROUND: For more than 20 years, intramuscular injections of botulinum toxin A have been an established treatment for spasticity in children with cerebral palsy. We investigated the proportion of children with cerebral palsy who receive such treatment in Norway and the guidelines that apply to the treatment. MATERIAL AND METHOD: Data from the five-year registration in the Cerebral Palsy Registry of Norway were used to investigate the proportion of children with cerebral palsy born in the period 1999-2010 treated with botulinum toxin A, and whether there were any variations in the proportion of children treated between the habilitation centres. We conducted an online survey to identify the treatment guidelines that were applied in all of the 21 habilitation centres. RESULTS: A total of 1 414 children (average age 6.3 years) were included, of whom 775 (55 %) had been treated with botulinum toxin A. The proportion of children who received treatment varied considerably between the habilitation centres (38-80 %; p < 0.001). The maximum dose of botulinum toxin A per treatment per patient was 200-600 units of Botox. Five centres reported to have written guidelines for the treatment indication. INTERPRETATION: The proportion of children with cerebral palsy who are treated with botulinum toxin A varies considerably between Norwegian habilitation centres.

Adaptation for participation!

PURPOSE: To explore children's experiences with testing, acquiring and using assistive devices. METHODS: Nine children (six boys, three girls, 9-12 years old, with different physical disability and activity experience, participated in semistructured interviews. The interviews were audio-taped, transcribed and analysed using Systematic text condensation. RESULTS: Assistive devices were reported to contribute to cope activities that the children otherwise would not have participated in. Several subjects listed the need for a shielded environment when adapting to new equipment. The children highlighted "independence in activities" and "having the opportunity to participate in activities with family and friends" as important for frequent use. Need for assistance and lack of localizations to perform the activities were listed as reasons for less frequent use. CONCLUSIONS: This study reveals that it is useful to map each child's opportunities for independency, appropriate locations for performing the activity and participation with friends, when considering obtaining assistive devices. Implications for Rehabilitation The use of assistive devices gives many children with physical disabilities the opportunity to participate in physical activity. Improving availability to assistive devices for physical activity should be a priority to help facilitate participation. Having opportunities to develop perceptions of competence may be essential for a child's long term participation in physical activity.

Hand Function in Young Children with Cerebral Palsy: Current Practice and Parent-Reported Benefits.

AIMS: To (1) describe characteristics of current interventions to improve hand function in young children with Cerebral Palsy (CP), and explore factors associated with (2) increased likelihood of hand and ADL training and (3) child benefits of training. METHODS: A cross-sectional design was used with parent-reported data and data from the Norwegian CP Follow-up Program (CPOP). A total of 102 children (53% of the cohort of newly recruited children in the CPOP, mean age: 30.3 months, SD: 12.1) were included. Hand function was classified according to the Mini-Manual Ability Classification System (Mini-MACS). Data were analyzed with descriptive statistics, cross-tables and direct multiple logistic regressions. RESULTS: The majority of the children performed training of hand skills and ADL. Parents reported high amounts of training, and training was commonly integrated in everyday activities. Both parents (OR = 5.6, p < .011) and OTs (OR = 6.2, p < .002) reported more hand training for children at Mini-MACS levels II-III compared to level I. Parents reported larger child benefits when training was organized as a combination of training sessions and practice within everyday activities (OR = 7.090, p = .011). CONCLUSIONS: Parents reported that the children's everyday activities were utilized as opportunities for training, hence describing the intensity of therapy merely by counting minutes or number of sessions seems insufficient.

[Adolescents with cerebral palsy and their contact with the GP and the habilitative services]. / Ungdom med cerebral parese og deres kontakt med fastlege og habiliteringstjeneste.

BACKGROUND: Cerebral palsy (CP) often entails a need for health and social services throughout life. Upon scrutiny, it has been found that the transition from services for children and adolescents to services for adults is particularly challenging. The study investigates contact between adolescents with CP and their GPs/habilitative services up to and after the age of 18 years, and the percentage who have an individual habilitation plan (IHP). MATERIAL AND METHOD: An attempt was made to identify all those with CP born in 1992 and 1993 and resident in southeast Norway. Seventy-four patients were included (time point I, interview and clinical examination). Forty-two (57%) responded at the follow-up examination (time point II, questionnaire). RESULTS: At time point I, 35 (47%) of the adolescents had consulted their GP in the past year, 49 (66%) had been in contact with the habilitative services, and 42 (57%) had an IHP. Twenty-eight (38%) used mobility aids. Use of mobility aids gave lower odds of consultation with the GP. Longer distances from home to the habilitative services gave lower odds of contact with both the GP and the habilitative services. Five adolescents with mobility aids did not have an IHP. At time point II, the percentage who had consulted their GP had increased somewhat, the percentage who had been in contact with the habilitative services had reduced, and the percentage who had an IHP was unchanged. INTERPRETATION: The findings reinforce the assumption that the health services provided to disabled adolescents are less locally based and less well coordinated than is supposed, and that there may be geographical differences in the service offered.