Caregivers' experiences with the new family-centred paediatric physiotherapy programme COPCA: a qualitative study

BACKGROUND: Caregivers' experiences during early intervention of their infant with special needs have consequences for their participation in the intervention. Hence, it is vital to understand caregivers' view. This study explored caregivers' experiences with the family-centred early intervention programme 'COPing with and CAring for infants with special needs' (COPCA).

METHODS: The data of this qualitative study were collected after 6 months of COPCA intervention in 15 families with an infant with special needs. COPCA was delivered by paediatric physiotherapists in training to become COPCA-coaches. Caregivers filled out a study-specific questionnaire with three open-ended questions addressing 1) their overall experience with COPCA, 2) what aspects of COPCA they had experienced as important, and 3) what they had learned during the intervention process. The answers were analysed using the content analysis approach of Graneheim and Lundman (2004).

RESULTS: Respondents were mothers. Interrater reliability of the content analyses of the three questions was twice excellent (κ=0.95, κ=0.92) and once good (κ=0.77). The content analysis of the first question resulted in four categories and three sub-categories e.g., evaluation of COPCA as a form of intervention, benefit from COPCA. The content analyses of the second question resulted in eight categories, e.g., home-based intervention, support from the therapist and the attainment of competences. The content analyses of the third question generated seven categories and four sub-categories e.g., to support the infant autonomously at home, to recognise the competences of the infant, caregiver confidence and relationship with the infant.

CONCLUSIONS: The participating mothers appreciated the COPCA early intervention programme. They especially valued its home-based setting, the support from the coach, and the experience being able to participate as active partners in the intervention make their own decisions. This means that the mothers valued the family-centred, ecological and relationship-based elements of early intervention that currently are recommended.