Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates.

Purpose: This project aimed to launch an international learning community to guide the development of a spina bifida (SB) curriculum for global health trainees.

Methods: Using a descriptive study design, a convenience sample of SB curricula were identified in 2022-23 by members of the Spina Bifida World Congress Outreach Committee and evaluated during a series of monthly Zoom calls to discuss SB education in a global health context. Participants included (1) leadership from the ReachAnother Foundation, (2) invited panelists from the Spina Bifida World Congress Global Health Symposium, and (3) global health students and preceptors.

The 'process of doing' in everyday occupations - a challenge for young adults with cerebral palsy.

There is a lack of knowledge about how persons with cerebral palsy (CP) perceive their 'process of doing' while performing everyday occupations. As described in the Model of the Process of Doing (MPoD), performing an occupation is a complex process consisting of six phases (generate idea, plan, initiate, enact, adjust, end) and time management. To collect the experiences of young adults with CP, classified at Manual Ability Classification System (MACS) level I or II, regarding how they perceive challenges in their occupational performance in relation to the different phases of the 'process of doing'.

Intervention with hand orthosis: experience from boys with Duchenne muscular dystrophy and their parents.

Purpose: To identify and describe possible ways of experiencing an intervention with hand orthoses in a study group including boys with Duchenne muscular dystrophy (DMD) and their parents. To capture the experiences of the persons directly involved as well as their family members.

Material And Methods: Eight boys with DMD (aged 8-21; median age 17.

Intervention with the CO-OP Approach leads to a transfer effect over time to untrained goals for children with cerebral palsy or spina bifida.

Purpose: This study aims to investigate whether the treatment effects, in terms of goal attainment, transfer effects and impact on executive functions, of an intervention in children with cerebral palsy or spina bifida using the Cognitive Orientation to daily Occupational Performance (CO-OP) Approach are maintained over time, from immediately after the intervention to three months afterwards.

Method: A three-month follow-up study, from an intervention using CO-OP. Thirty-four children (7-16 years) each identified four goals (one untrained to examine transfer) and participated in an eleven-session intervention.

A scoping review of cognition in spina bifida and its consequences for activity and participation throughout life.

Aim: The aim of this scoping review was to summarise findings concerning cognitive characteristics in people with spina bifida and explain how cognitive factors influence activities and participation in different areas and stages of life.

Methods: PubMed, Psych INFO, ERIC, Scopus, CINAHL and the Cochrane Library were searched for English language papers published in 2000-2018. A total of 92 papers were selected and quality was assessed according to the McMaster criteria.

The Cognitive Orientation to daily Occupational Performance (CO-OP) Approach is superior to ordinary treatment for achievement of goals and transfer effects in children with cerebral palsy and spina bifida - a randomized controlled trial.

Purpose: Children with cerebral palsy (CP) or spina bifida (SB) often have executive dysfunction affecting activity performance. With the Cognitive Orientation to daily Occupational Performance (CO-OP) Approach, children find their own way to perform activities, using problem-solving strategies and meta-cognitive thinking. The present study aimed to investigate the effectiveness of the CO-OP Approach in children with CP or SB, compared with conventional rehabilitation, in achieving self-identified activity goals, and to explore any generalization and transfer effects.

Managing to learn bimanual activities - experiences from children and adolescents with cerebral palsy - a qualitative analysis.

Purpose: Children and adolescents with cerebral palsy often have impaired hand function. This makes it difficult for them to deal with everyday activities. The aim of the study was to explore the experiences of children and adolescents with unilateral spastic cerebral palsy when it comes to learning and dealing with activities requiring bimanual use.

Daily activity performance in congenital and childhood forms of myotonic dystrophy type 1: a population-based study.

Aims: To identify and describe the profile characterizing motor and process skills during daily activity performance in individuals with congenital and childhood forms of myotonic dystrophy type 1 (DM1) and to investigate differences in performance between subgroups.

Method: Sixty participants (34 males, 26 females, mean age=17y 8mo, SD=6y 0mo, range 5y 8mo-29y 0mo) were divided into severe congenital (n=9), mild congenital (n=20), and childhood (n=31) DM1 subgroups. Daily activity performance was evaluated using a standardized observational instrument: the Assessment of Motor and Process Skills.

Long-term effects of repeated botulinum neurotoxin A, bimanual training, and splinting in young children with cerebral palsy.

Aim: To investigate long-term development of hand function after repeated botulinum neurotoxin A (BoNT-A) and occupational therapy at a young age.

Method: Twenty children with unilateral spastic cerebral palsy (CP) (14 males, six females; median inclusion age 3y 1mo, range 1y 11mo-4y 3mo) participated in this longitudinal study. Ten children received occupational therapy after a randomized controlled trial and 10 repeated BoNT-A plus occupational therapy during 1-year.

"With CO-OP I'm the boss" - experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida.

Restrictions to activity and participation in persons with cerebral palsy or spina bifida are often due to both motor and executive dysfunction. Hence methods focusing solely on motor issues are not enough to enhance participation. The Cognitive Orientation to daily Occupational Performance Approach is a performance-based approach offering clients opportunities to create their own strategies to learn skills.

Daily time management in children with spina bifida.

Purpose: Spina bifida (SB) often results in a complex disability and can also cause cognitive dysfunction. No previous study has investigated the ability to adapt to time in children with SB. This ability is crucial for an individual's possibility to develop autonomy in life.

When I do, I become someone: experiences of occupational performance in young adults with cerebral palsy.

Purpose: Persons with cerebral palsy, even if they have relatively good motor functions, have a lower level of independence and participation in everyday activities than persons of the same age without disabilities. However, there are few descriptions of how persons with cerebral palsy themselves perceive their performance of activities in everyday life. The aim of this study was to describe the perceptions that young adults with cerebral palsy have of occupational performance in everyday life.

How children with cerebral palsy master bimanual activities from a parental perspective.

Background: During childhood, children learn the daily life activities they want and need to do. Children with unilateral spastic cerebral palsy often have difficulties performing activities requiring two hands.

Aim: To describe parental reasoning on how children with unilateral spastic cerebral palsy learn to master the performance of bimanual activities in everyday life.

Gaze-controlled communication technology for children with severe multiple disabilities: Parents and professionals' perception of gains, obstacles, and prerequisites.

The aim of this study was to explore parents' and professionals' thoughts of how a gaze-controlled computer can be beneficial to children with severe multiple disabilities. All systems were provided primarily for symbol-based communication, but were also used for other purposes such as play, leisure and school activities. A further aim was to investigate factors affecting usability, specifically for communication.

Validity and test-retest reliability of Children's Hand-use Experience Questionnaire in children with unilateral cerebral palsy.

Aim: To investigate the validity of the internet-based version of the Children's Hand-use Experience Questionnaire (CHEQ) by testing the new four-category rating scale, internal structure, and test-retest reliability.

Method: Data were collected for 242 children with unilateral cerebral palsy (CP) (137 males and 105 females; mean age 9y 10mo, SD 3y 5mo, range 6-18y). Twenty children from the study sample (mean age 11y 8mo, SD 3y 10mo) participated in a retest within 7 to 14 days.

Botulinum toxin A injections and occupational therapy in children with unilateral spastic cerebral palsy: a randomized controlled trial.

Aim: To investigate the effects of repeated botulinum toxin A (BoNT-A) injections combined with occupational therapy, including a splint, compared with occupational therapy alone on hand function in children with unilateral spastic cerebral palsy (USCP), in all International Classification of Functioning, Disability and Health (ICF) domains.

Method: This was a randomized controlled study, population-based and evaluator-blinded for primary outcome (October 2004 to September 2010). Twenty children (14 males; median age 3y 1mo) with USCP, recruited at a rehabilitation centre in Sweden, were assigned to one of two parallel groups using concealed allocation.

Patterns of participation in school-related activities and settings in children with spina bifida.

Purpose: To evaluate how children with spina bifida (SB) participate in school-related activities and to explore if their motor and process skills in task performance were related to their level of active participation in school.

Method: Fifty children from a geographical cohort of children with SB (aged 6-14 years) and their teachers rated the children's frequency of participation in school-related activities using a Swedish adaptation of the Availability and Participation Scale. The teachers also rated each child's level of active participation with the School Function Assessment, part one.

Is autonomy related to the quality of performance of everyday activities in children with spina bifida?

Purpose: To investigate the relationship between the level of autonomy and the quality of performance of everyday activities in a population-based cohort of children with spina bifida and to study the agreement between the children's and the parents' ratings of autonomy.

Methods: 50 dyads of children (aged 6-14) with spina bifida and their parents rated the children's level of autonomy with an adapted, Swedish version of the Autonomy Scale from the Arc's Self-Determination Scale. Each child's quality of performance of everyday activities was assessed with the Assessment of Motor and Process Skills (AMPS).

Are there cross-cultural differences of ADL ability in children measured with the Assessment of Motor and Process Skills (AMPS)?

Introduction: In many studies of self-care assessments for children, cultural differences in age-norm values have been shown. No study has evaluated whether there are cross-cultural differences in ADL motor and/or process skills in children when measured with the Assessment of Motor and Process Skills (AMPS).

Aim: To investigate if there were systematic differences in ADL ability measured with the AMPS between children from the Nordic countries and North America and to evaluate the applicability of the existing international age-normative values for children from these two regions.

Quality of performance of everyday activities in children with spina bifida: a population-based study.

Aim: The aim of this study was to evaluate the quality of the performance of everyday activities in children with spina bifida.

Methods: Fifty children with spina bifida (of 65 children in a geographic cohort), aged 6 to 14 years, were evaluated with Assessment of Motor and Process Skills.

Results: Compared with age-normative values, 60% of the children with spina bifida were found to have motor ability measures below 2 SD and 48% process ability measures below 2 SD.