Early Intervention in Unilateral Cerebral Palsy: Let's Listen to the Families! What Are Their Desires and Perspectives? A Preliminary Family-Researcher Co-Design Study.

Abstract

Cerebral palsy (CP) is a clinical diagnosis based on a combination of clinical and neurological signs, which occurs between the ages of 12 and 24 months. Cerebral palsy or a high risk of cerebral palsy can be accurately predicted before 5–6 months, which is the corrected age. This would allow the initiation of intervention at an early stage. Parents must be more involved in the development and implementation of the early therapy, increasing opportunities for parent–child interaction. The aim of this study was to learn from the perspectives of families with children under 12 months with unilateral cerebral palsy (UCP), what ingredients (barriers and facilitators) should be involved in early intervention so that we could co-design (researchers and families) a multidisciplinary guideline for a global intervention addressed to the needs of the child and the family. Semi-structured interviews were conducted at a time and venue convenient for the families. A total of ten families with experience in early intervention were invited to attend the interview with open questions: (1) What components should early intervention have for a baby diagnosed with UCP? (2) What components should early intervention have for the family? (3) What should the involvement of the family be in early intervention? (4) What barriers included in early intervention should be removed? From the data analysis, three key topics emerged and were subsequently named by focus group participants: (1) UCP early intervention components, (2) family involvement in early intervention of UCP, and (3) removing barriers and creating facilitators within early intervention. The participation of the families (mothers) in the co-design of the necessary ingredients within the scope of a multidisciplinary early intervention guide aimed at children with UCP under 12 months allows learning about their reality and not that of the therapist. The following list highlights the present barriers as perceived by the parents: intervention as spectators, therapeutic goals, clinic environment, and lack of empathy, and the possible facilitators determined by the parents during the implementation comprised teamwork, the family’s goals, motivation during the intervention, and learning at home. Thus, an early intervention program to improve global functionality should address family involvement through multidisciplinary coaching and the modification of the environment, encouraging family goals and family support through the family–therapist team.