“If I Knew Then What I Know Now”: Parents’ Reflections on Raising a Child with Cerebral Palsy

Abstract

In this study we investigated experiences of parents of children with cerebral palsy (CP) to identify areas in which health care providers and educators could improve practice. A second objective was to create educational material for parents of young children newly diagnosed with CP. A purposive sample of nine parents, who previously participated in the Adolescent Study of Quality of Life, Mobility, and Exercise, was recruited through phone. During an interview, parents reflected on the experience of raising a child with CP from birth to young adulthood. These interviews were audiotaped, transcribed, and coded using the International Classification of Functioning, Disability and Health-informed model and analyzed to identify major themes. Parents elaborated upon what was helpful and what could be changed to improve their children's and families' experiences through supports, advocacy, and education at different levels. The results informed the development of tips for parents and children with CP to enhance their families' experiences and interactions with health care providers, educators, and others.

Clinical Prognostic Messages From a Systematic Review on Cerebral Palsy

“…Parents recommend and prefer the following communication strategies when receiving bad news: (1) use of an honest, upfront, specific, and transparent communication style to enable parents to seek their right supports after receiving the news; (2) discussion about the child's strengths to convey hope and reframe the future; (3) person-centered and respectful treatment of the child, so that the news feels personalized; (4) provision of a list of frequently asked questions to help parents prepare their own questions; (5) delivery of news to both parents simultaneously, or to one parent accompanied by a support person, to assist with information recall; (6) provision of a follow-up interview to assist with information recall, understanding, and acceptance; (7) provision of key information in writing; and (8) involvement of an advocate/keyworker/case manager to help with planning after the receipt of news. 5,24,26,27 In light of this parental counsel about preference for a strengths-based approach, professionals could positively reinforce that the level of physical disability associated with cerebral palsy does not predetermine a child's "happiness" and quality of life (high-quality GRADE). 28,29 …”

Paediatric Health Professionals as Parent Educators: A Developing Role?

“…For example, at the time of diagnosis, parents will typically experience very strong emotions including fear, guilt, anger and powerlessness (Nuutila and Salanterä 2006), and it is accepted that, at this early stage, the incompatibility between emotional distress and optimal learning is unavoidable (Jedlicka-Köhler, Götz, and Eichler 1996). This difficulty is reflected in reports that there is frequently a significant discrepancy between information given and information understood (Reid et al 2011), with parents often reporting dissatisfaction with the amount of information provided (Graungaard andSkov 2007, Hummelinck andPollock 2006). …”

Understanding parent advocacy during the transition to school of children with developmental disabilities: three Canadian cases

“…Research suggests two issues contribute to the lack of conceptual and practical progress on understanding parent advocacy: the lack of a robust model (McCormick and Ozuna 2012) and the way existing approaches have largely ignored the experience and perspective of parents (Reid et al 2011). A recent model of self-advocacy (Test et al 2005) has gained the attention of researchers and practitioners and may offer direction (Clemens, Shipp, and Kimbel 2011).…”