Paoli Silvia [Azienda Ospedaliera Universitaria – Meyer, Firenze, Italia]
Boso Elena [AULSS6 Euganea, Padova, Italia]
Savogin Chiara [AIAS Busto Arsizio, Busto Arsizio, Italia
In the pediatric field, one of the biggest challenges for the physiotherapist is the relationship with the parents of a child with a disability, because every family, every parent, every person experiences the disability in their own way [1]. The relationship is also influenced by the parents’ beliefs about culture, health and disability which will influence the perspective and goal of the child’s education and rehabilitation[2,3]. In the Italian context there are no studies that have investigated the health expectations of Italian of children with CP and, more specifically, their perspectives on physiotherapy [4].
The study aims to explore the perspective of Italian parents of children between 2 and 6 years of age, diagnosed with CP, in relation to physiotherapy: the purpose of the therapy, how it is carried out, parental involvement and the interaction with other areas of the child’s life.
The study used qualitative methods, with semi-structured interviews conducted with parents of eligible children. The interview outline was extrapolated from an article in the primary care literature, modified and adapted to the Italian and physiotherapy context. The interview was tested on a small sample of parents to confirm its ability to obtain information on all topics. A physiotherapist, assisted by a communication expert, conducted the video interviews, which were recorded and then transcribed in full. The transcriptions were independently evaluated by two experimenters in order to identify the most common and recurring themes, through the identification of semantic labels. The two investigators met to compare and discuss the concordance of themes. Finally, the themes were organised according to the ICF framework as in other studies in the literature. The data from the final table were processed and then compared with the result in the literature.
12 interviews were conducted with parents of eligible children from different Italian regions. Body functions and structures: parents are well informed about their children’s lack of competence. They want and are involved in their therapy, both during the therapy itself and at home, trying to repeat exercises and to correct movements. Activity and participation: school is seen as a good place for children to interact and develop their relational skills and independence. Parents encourage children to do things on their own, respecting the need for more time, changing activities and the environment. Environmental factors: Parents are aware that they have a deep knowledge of their children and feel that they can express themselves for their benefit. Early and continuous treatment is seen by parents as an important factor and therapists become a constant reference. Information needs: Parents groups to share information, information about laws and psychological support when needed.
The interviews conducted explored parents’ opinions on their children’s rehabilitation pathways in depth. Parents value early and continuous care, opportunities for discussion, and a respectful environment. They also want services to consider experimental approaches, driven by their desire to do everything possible for their child. However, physiotherapy interventions are uneven across Italy, and family-centered care principles are not yet standard practice nationwide. In the interviews, intervention strategies related to supporting participation seem to be less valued, parents describe participation less precisely than goals related to body functions and structures. Compared to international standards, the Italian experience is intermediate: there are significant opportunities for participation in school life, yet parents’ rehabilitation goals seem more focused on physical functions and structures.
