Development of training and support for parents who perform specialist medical care at home

Thesis

Complex medical care is now performed by families at home, and is no longer solely the domain of healthcare professionals working in hospitals. Parents caring for children with serious or chronic conditions perform a range of medical procedures for their children, including caring for children with feeding tubes and children who need support with breathing (children dependent on long-term ventilation). This thesis examines the challenges and risks of complex medical care for children at home, and explores how best to train and prepare parents to provide this care, drawing upon relevant psychological theory and the lived experience of families. The first section of the thesis explores the clinical issues: Chapters 3 and 4 examine the safety concerns of clinicians who support families at home through analyses of incident reporting data, and Chapters 5 and 6 explore the experiences of parents caring for children with complex medical needs through interviews and surveys. This first section reveals a clear need to improve training and support for families. The second section (Chapters 7-9) consists of a series of experiments on how findings from psychology could inform the development of training interventions for parents caring for children with gastrostomies (a type of feeding tube). There was a significant benefit of supplementary videos and images on parents’ learning, but limited benefit of retrieval practice. Schema-enhanced training had a detrimental impact on performance in a test of knowledge. In the final section (Chapters 10 and 11) I develop and evaluate a package of training and support for parents caring for children with feeding tubes which has now been implemented across Oxfordshire and the Thames Valley. The training package consists of a library of videos to support families from referral for a gastrostomy through to the first few years caring for their child at home. Survey data from families and clinicians confirm the value of the library of videos for educating and empowering families.

Authors: Page, B

• DOI: 10.5287/ora-kz09jvkog
• Type of award: DPhil
• Level of award: Doctoral
• Awarding institution: University of Oxford
• Language: English
• Keywords: home care; gastrostomy; medical complexity; retrieval practice; psychology of learning; schemas; family caregivers
• Subjects: Medical education; Pediatrics; Caregivers; Learning, Psychology of; Learning strategies; Patient safety