Goal Setting for Children with Cerebral Palsy: Navigating the Family Centred Practice Narrative

Abstract

Children with cerebral palsy often require additional support at school. Education, Health and Care Plans facilitate active collaboration between education, health care professionals and the family, to work in unison to identify goals for children with additional needs and ensure the necessary provision is in place for these outcomes to be achieved. Whilst an increasing body of knowledge is emerging relating to family centred goal setting practices for children with cerebral palsy, these studies have predominantly concentrated on clinic and community-based services with collaborative goal setting continuing to present a challenge. This research aimed to gain an understanding of perspectives from school-based educators, healthcare practitioners and parents of children who attend the school to create a resource in the form of a framework for practitioners to support collaborative goal setting.

Participatory action research and constructivist grounded theory were selected to account for my position as researcher within the organisation that I work, and the positions held by the prospective participants (co-researchers): education and health care practitioners, parents of pupils attending the school, and pupils. Creating a goal setting framework required understanding experiences and perspectives of all those involved with or impacted by goal setting practices. A participatory approach enabled the transformation of ideas for solutions into actions for change, with those for whom the changes would affect as central to decision making. Constructivist grounded theory was selected due to my already established presence in the research field and for its emphasis on explanation and understanding of social processes utilising an iterative approach to support data collection and analysis of the participatory action research. The research was carried out in three broad phases between 2019 and 2021 with each phase introducing a co-researcher group and the implementation of actions, and subsequent cycles of action and reflections directed by the group(s).

The outcome of the research resulted in the creation of the Purposeful Achievement Collaborative Engagement (PACE) goal setting framework and is offered as a resource for practitioners to address the factors identified through the research in the form of a theoretical model and practical resource. The constructivist grounded theory developed from this study: Navigating the family centred practice narrative depicts the journey that practitioners and families make, based on previous experiences, expectations, and future ambitions. Categories that underpin the theory: Competing demands on time, Importing emotions, Missing what’s important, and Using the right language to inform the goal setting framework in order to initiate change and attempt to avoid occupational injustice and marginalisation.

The purpose of the framework is to raise awareness of the different aspects and considerations for setting goals within a family centred approach to practice. This aims to support practitioners with goal setting by considering a range of interlocking components to help understand behaviours and actions which can support improved collaboration. It aims to support decision making by practitioners that reflects the desires of the child and their family and by extension, promote occupational justice.

Collaborative goal setting is a challenge for practitioners and parents, as demonstrated by this research. To achieve the best possible outcome for all, school-based goal setting needs to be a collaborative process between the child, the family, education and health care professionals. Setting and progressing to further goals is a dynamic process and although the focus may be toward specific achievements, a variety of factors will impact on and influence the outcome.

Date of Award	Jun 2023
Original language	English
Supervisor	Alasdair Gordon-Finlayson (Supervisor), Roshni Khatri (Supervisor) & Jackie Parkes (Supervisor)