Improving access to specialist paediatric services for children with palliative or complex care needs: the potential of telehealth in the home

In Australia, specialist paediatric services are available only at tertiary facilities located in large towns and cities. Families of children diagnosed with a life limiting or life threatening condition, are often required to travel large distances, for extended periods of time, to access these specialist paediatric services. In Brisbane, Queensland, the Paediatric Palliative Care Service (PPCS) is a state-wide service based at the Royal Children’s Hospital (RCH) responsible for providing care to children diagnosed with a life limiting or threatening illness including metabolic, neurological, cardiac, congenital and oncological conditions. Telehealth is the delivery of health services and/or health related information at a distance using communication methods such as telephony, videoconferencing and email. It can play an important role to facilitate communication between tertiary services, the local health care teams and families. Telehealth is successfully used by many specialties to communicate and share information, enabling greater access to specialist care in more locations. The use of telehealth applications in the home is less common. Advances in technology have made using Internet-based video communication between the home and hospital both a plausible and viable mechanism for the delivery of specialist care into the home. Following pilot work, a Home Telehealth Program (HTP) was established in 2009 at the RCH to support children referred to the PPCS. There was however, a paucity of evidence regarding the use of Internet-based video communication to provide care at home for this group of children and their families; specifically, little was known about providing clinical care and support in this manner. The aim of this thesis was to explore the feasibility, acceptability, effectiveness, satisfaction and economics, of Internet-based video communication to support families caring for a child with a complex or life threatening condition in the home environment. Qualitative and quantitative methodologies were used to examine various aspects of the HTP. There were three study strands, each comprising several studies. The study strands explored three research questions: 1.In children who are receiving home based palliative care, does the use of Internet video-consultation with the PPCS, compared with standard care, provide comparable outcomes (quality of life for caregiver, satisfaction, access, costs)? 2.What are the internal and external factors that influence the use of the home telehealth program? 3.In children who are receiving home based care, can Internet video-links be used to undertake a double check and a) improve the safety and b) reduce cost with associated with the administration of parenteral medication? In the first study strand, the clinical and economic outcomes of the HTP were examined in four studies: • a quantitative analysis of service activity which included analysis to predict utilisation of the HTP; • a pilot cohort study which examined objective outcomes including quality of life for caregivers, symptomology and satisfaction with care; • a Delphi study which determined the components of a paediatric palliative care consultation and led to the development of a tool to compare the quality of a consultation conducted in person or by telehealth; • an economic analysis of costs associated with the HTP and in-person consultations. The second study strand examined the internal and external factors that effected the utilisation of the HTP in two qualitative studies: • semi-structured interviews with clinicians; • a direct observational study of team decision-making. The third study strand explored the potential of Internet-based video communication to improve the safety and costs of preparing and administering parenteral medication in the home. This was examined in three studies: • two quantitative observational studies, which assessed the feasibility and effectiveness of video communication to double check medications at a distance; • a cost minimisation analysis of the potential associated savings. Internet-based video communication was found to be a feasible, acceptable and economical method of providing clinical care in the home. Clinician and family satisfaction was found to be high, and the clinical effectiveness of the HTP was demonstrated. However, significant barriers and limitations of the HTP were also identified which explained the low utilisation of the program. Communication processes are altered when using telehealth in the home, and these processes can both positively or negatively influence clinicians and caregivers’ perception of the usefulness of home telehealth. Effective communication between caregivers and clinicians is regarded as a critical component in palliative care; the effects of telehealth on communication processes must therefore be considered