Proposed categories for reporting of service organization in rehabilitation in clinical trials: a discussion paper.

Background: The lack of standardized reporting for crucial organizational factors in rehabilitation poses a significant barrier to understanding their impact on patient outcomes in clinical trials and meta-analyses.

Aim: Based on the categories in the International Classification of Service Organization in Rehabilitation (ICSO-R 2.0), we aimed to develop reporting standards specifically for organizational factors in clinical trials.

Children with Cerebral Palsy and Their Parents Have Different Experiences of Pain Management: A Qualitative Study.

: The aim of this study is to explore and compare experiences of pain management strategies for children with CP from the perspectives of children themselves and their parents. : A secondary inductive analysis of previously collected qualitative data was performed. Fourteen children with CP and one parent of each child were interviewed separately about the management of the child's pain.

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.

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.

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.

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

To explore experiences of parenting a child with CP and pain. 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.

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.

"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.

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.

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.

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).

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.

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.

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.

Systematic Monitoring of Cognition for Adults With Cerebral Palsy-The Rationale Behind the Development of the CP-Adult Follow-Up Protocol.

Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2-2.5 per 1,000 live births.

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.

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.

Treatment of spasticity in children and adolescents with cerebral palsy in Northern Europe: a CP-North registry study.

Background: Spasticity is present in more than 80% of the population with cerebral palsy (CP). The aim of this study was to describe and compare the use of three spasticity reducing methods; Botulinum toxin-A therapy (BTX-A), Selective dorsal rhizotomy (SDR) and Intrathecal baclofen therapy (ITB) among children and adolescents with CP in six northern European countries.

Methods: This registry-based study included population-based data in children and adolescents with CP born 2002 to 2017 and recorded in the follow-up programs for CP in Sweden, Norway, Denmark, Iceland and Scotland, and a defined cohort in Finland.

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, and The purpose was related to measure development within the field of paediatric rehabilitation.

Methods: In a scoping review, following the PRISMA-ScR, the databases and were searched for publications that described engagement and/or involvement constructs.

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.

Hand use development in children with unilateral cerebral palsy.

Aim: To describe the development of hand use during bimanual activities among children with unilateral cerebral palsy (CP).

Method: A cohort of 166 children (79 females, 87 males; age range 18mo-13y, mean [SD] age at first assessment 37.6mo [20.

Changes in physical activity and basic psychological needs related to mental health among people with physical disability during the COVID-19 pandemic in Norway.

Background: People with a physical disability are more inactive than the general population. Due to the positive effects of physical activity (PA) on physical and mental health, maintaining a physically active lifestyle is important especially during challenging periods of life.

Objective: Explore whether people with a physical disability experienced changes in PA, health status, and psychological need satisfaction (autonomy, competence and relatedness) during the first wave of the COVID-19 pandemic in Norway.

Risk Factors for Cerebral Palsy in Moldova.

This is the first study assessing risk factors for cerebral palsy (CP) among children born in Moldova. The aim of this study was to identify and describe risk factors for cerebral palsy (CP) among children born in Moldova, which is one of the low-middle income countries in Europe. We identified 351 children with CP born during 2009 and 2010 in Moldova.

"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.