Abstract
Children with cerebral palsy (CP) have complex physical disabilities and often show a decline in health and participation around school-age. New Zealand parents of school-age children with CP have limited professional support with therapy home programmes (THPs) to support their child’s changing needs. Technology to support parents with their children’s health, termed Parent-focused eHealth (PFeHealth), may address parent’s need for support.
The aim of this research was to explore how PFeHealth can support parents who are providing THPs for their children with CP, focusing on standing and walking activities. The thesis focused on three key questions:
1. How can the active ingredients in PFeHealth be defined and reported?
2. What is the context in which THPs are situated?
3. How can digital technology be used to support parents with their child’s THP?
Methods: A philosophy of Functional Contextualism underpins this thesis and supports a mixed-methods approach to three phases of enquiry. Phase I was a scoping review to identify how PFeHealth is being described and used in the published literature through a persuasive technology and behaviour change lens. Phase II used thematic analysis to explore the context in which THPs are situated and clarify what parents perceive as a successful THP. Phase III involved a codesign with parent stakeholders to produce a PFeHealth prototype as an exemplar of how PFeHealth can address parent’s needs. Synthesis of data from all three phases shaped new understandings of PFeHealth to facilitate future research in this area.
Results: Phase I confirmed the benefit of using models and taxonomies related to persuasive technology and behaviour change to capture active ingredients in PFeHealth, defining three synergistic phenomena with distinct behaviour and outcome targets.
Phase II described THPs through a unifying theme, The Best Possible Future, with four themes related to, Parenting, Guides, Hard Work and School. The analysis found parents were highly motivated to do the THP and had integrated many therapeutic activities into their child’s day; but missed therapists’ guidance and support to feel confident and successful in their efforts.
Phase III describes a codesign with parent stakeholders resulting in a prototype offering a service-delivery model that addressed (1) access to therapy support (2) changing needs (3) parent capacity and (4) complex tasks.
Synthesising three phases shaped the development of a framework to link principles and phenomena of PFeHealth to active ingredients in the digital intervention. This facilitated a comprehensive analysis of the prototype and an online reporting tool for future research.
Conclusion: A synthesized framework of behaviour change and persuasive technology provided an organising structure for designing and reporting the active ingredients in PFeHealth. THPs takes place within the context of a challenging environment related to difficulty accessing support and the impact of a growing child’s disability. PFeHealth can support parents by targeting engagement, implementation and a habituated desire to interact with the digital technology. Effectiveness can be determined by parents’ reporting sustained motivation in managing the complex challenges of their children’s THP resulting from sustained engagement with the eHealth technology.