Parents’ experiences with physical and occupational therapy for their young child with cerebral palsy: a mixed studies review

Abstract

Understanding the experiences of parents with their child's intervention might help meet the needs of parents and, subsequently get them engaged in their child's intervention. As parents' early beliefs regarding their child's intervention has consequences for treatment participation, it is important to understand these parental perspectives. The aim of this mixed studies review was to give an overview of the experiences and related factors of parents of young children (0-5 years of age) with cerebral palsy in relation to the physical and/or occupational therapy of their child in a rehabilitation setting. The literature was searched systematically for qualitative and quantitative studies published between January 1990 and July 2011. Inclusion criteria were (1) the study population consisted of parents of children with cerebral palsy, with at least 25% of children under the age of five; (2) children had received physical and/or occupational therapy in a rehabilitation setting; and (3) the experiences of the parents with their child's therapy were addressed. Data were synthesized with the framework synthesis method resulting in a conceptual framework describing the factors that are related to the parents' experiences with their child's interventions. A total of 13 studies (eight qualitative and five quantitative) were included and evaluated. Parents expressed various aspects in context, process and outcomes when asked about their experiences with their child's intervention. They had different needs over time and needed time to build a collaborative relationship with their child's therapists. The proposed framework acknowledges the various aspects in context, process and outcomes that parents reported when asked about their experiences. Knowing this, the importance of the broader context of the child in a family should be acknowledged; realizing the impact that the demands of daily life, supports and resources provided to parents, attitudes in the community and culture have on parental experiences.

Using family and staff experiences of a botulinum toxin‐A service to improve service quality

“…The themes reported by our study are also similar to those suggested in studies of families' experiences of other paediatric rehabilitation services and interventions—that while families' experiences are both individual (Nijhuis et al, ) and change over time (Piggot, Paterson, & Hocking, ), families value being included as part of their child's care team and being empowered to make decisions regarding their child's treatment (Kruijsen‐Terpstra et al, ), communication between agencies (Peplow & Carpenter, ), having access to a network of people with similar experiences (Knis‐Matthews et al, ), and acknowledgement of their broader circumstances (Kruijsen‐Terpstra et al, ). Priorities for service improvement activities to move towards greater family‐centred services should therefore focus on these areas (see Box ).…”

Parents’ experience of undertaking an intensive cognitive orientation to daily occupational performance (CO-OP) group for children with cerebral palsy

“…[6,7] It is widely recognized that parents and families play a crucial role in a child's life and participation in rehabilitation programs. [8] The cognitive orientation to daily occupational performance (CO-OP) is a client-centered, goalfocused, task-specific training approach that combines motor learning with cognitive problem-solving strategies.…”

“…[6,8] Children are reliant on the involvement of their families in order to access services, and receive an adequate dose of therapy. Given the critical role that parents play, it is important to consider the parent's lived experience of undertaking therapeutic treatments with their child.…”

“…Given the critical role that parents play, it is important to consider the parent's lived experience of undertaking therapeutic treatments with their child. A number of studies have explored the experience of parents of children with CP undertaking different therapeutic interventions, [6,7] however, none have explored the experience of CO-OP with this population.…”

Interventions of health education in mothers of children with cerebral palsy

“…Health education thus becomes a vital component of early intervention; based on a familycentered approach or practice, providing mechanisms and strategies for family empowerment, intensity and continuity of care, promoting better family adaptation to children with disabilities, lower levels of stress, anxiety and family frustration 3 ; In addition to providing children with many and better opportunities for active practice within their daily routines 4 . It is understood today that the health team must be able to understand the experiences and guide the parents and/or caregivers of children with disabilities; to listen to them and to recognize them as part of a joint strategy of coping and comprehensive rehabilitation of these children 5 . Avoiding harmful attitudes, such as passivity, where parents and families become mere replicators of what is oriented to them, without the actual knowledge of the condition of their children and/or the purpose of the guidelines.…”