Parti-CP: Barriers and facilitators for participation in children for cerebral palsy, their siblings and families in Switzerland

Preliminary Findings: Work Package 1

We conducted interviews with 16 families from across Switzerland. In total, 16 children with CP, 25 siblings, and 29 parents participated. The interviews were audio‑recorded and transcribed. We warmly thank all children, adolescents, and parents who took part!

The full analysis is still in progress. However, results on the siblings are already available (see publications):

The participation of siblings is shaped by their complex family situation. Everyday activities - both with and without their family - play an important role: siblings take part in many different activities and appreciate having a wide range of possibilities. Joint activities with their brother or sister with CP (e.g., playing, travelling, watching movies), activities on their own (e.g., crafting, reading), with their peers (e.g., meeting friends, home visits, going to the playground), or with a parent (e.g., sports, summer tobogganing, visiting amusement parks) all represent important experiences. Spending time and sharing closeness with the family, having fun, seeking adventure or personal interests, and experiencing belonging and friendship are among the key reasons for participation.

However, their daily lives are also marked by challenges, such as:

• varying levels of support available from family and extended relatives
• difficulties engaging in spontaneous activities
• constantly balancing different needs within the family
• feeling overlooked or not adequately included in everyday family life.

A secondary analysis provided further in-depth insights into how one sister experiences shared activities with her brother with CP, learns to understand disability, and develops her identity as a sister.

Together with a family and in collaboration with a school class, the findings were made accessible in the form of a brochure: four stories narrate the experiences of Vanessa and her brother. Additional teaching materials for middle school (ages 9-12) support teachers and interested readers in addressing the topic in the classroom.

Preliminary Findings: Work Package 2

Based on the interviews from Work Package 1, suitable quantitative instruments for assessing participation, health‑related quality of life, and self‑concept were selected, partially translated, and culturally adapted (if necessary).

The following instruments were selected for questionnaire‑based data collection:

• Young Children’s Participation and Environment Measure (YC‑PEM) for participating children aged 2–5
• Participation and Environment Measure for Children and Youth (PEM‑CY) for participating children aged 6–13
• Youth and Young Adults Participation and Environment Measure (Y‑PEM) for adolescents aged 14–17
• KIDSCREEN‑10
• MyTreehouse

In addition, supplementary questions for the child with CP, for siblings, and a questionnaire on family participation were developed.

Preliminary Findings: Work Package 3

Nearly 800 families were invited to participate in the questionnaire study. Letters were sent to all children with CP registered in the Swiss‑CP‑Reg between the ages of 2 and 17, as well as to their siblings and parents. Data collection is conducted electronically via REDCap, and families can participate in three national languages (German, French, Italian). Responses will be combined with medical data to identify predictors of participation.

Preliminary Findings: Work Package 4

Work Package 4 involves a Delphi process with stakeholders and experts to develop recommendations for improving the participation of children with CP, their siblings, and their families.

The project is led by researchers from the Institute of Social and Preventive Medicine at the University of Bern, the University Hospital Bern, the Swiss Children’s Rehab at the Children’s Hospital Zurich, and the Zurich University of Applied Sciences. It is embedded within the Swiss Cerebral Palsy Registry (Swiss‑CP‑Reg).
The mixed‑methods study comprises four work packages with qualitative and quantitative components, with a particular emphasis on the involvement of families.

Aim:

The findings will be used to generate robust knowledge about how children with cerebral palsy (CP), their siblings, and their families as a whole experience participation in Switzerland. This will form the basis for developing evidence-based recommendations for families, rehabilitation and healthcare services, advocacy groups, and policymakers.