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.