BackgroundAdvances in technology have made the use of telehealth in the home setting a feasible option for palliative care clinicians to provide clinical care and support. However, despite being widely available and accessible, telehealth has still not been widely adopted either in Australia or internationally. The study aim was to investigate the barriers, enablers and perceived usefulness for an established home telehealth program in paediatric palliative care from the perspective of clinicians.MethodsSemi-structured interviews (n = 10) were undertaken with palliative care clinicians in a tertiary paediatric hospital to identify attitudes to, satisfaction with, and perceived benefits and limitations of, home telehealth in palliative care. Iterative analysis was used to thematically analyse data and identify themes and core concepts from interviews.ResultsFour themes are reported: managing relationships; expectations of clinicians; co-ordination, and the telehealth compromise. Core concepts that emerged from the data were the perceived ability to control clinical encounters in a virtual environment and the need to trust technology. These concepts help explain the telehealth compromise and low utilisation of the home telehealth program.ConclusionsEffective communication between caregivers and clinicians is recognised as a core value of palliative care. Home telehealth has the potential to provide a solution to inequity of access to care, facilitate peer support and maintain continuity of care with families. However, significant limitations and challenges may impede its use. The virtual space creates additional challenges for communication, which clinicians and families may not intuitively understand. For home telehealth to be integrated into routine care, greater understanding of the nature of communication in the virtual space is required.

We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families were allocated, non-randomly, to a control group (usual care) or an intervention group (usual care with the addition of home telehealth consultations). The primary outcome measure was quality-of-life score. Caregivers were surveyed for up to 99 days following recruitment. A descriptive analysis of the quality-of-life data showed no differences between caregivers in the two groups. However, important lessons were learnt regarding factors which influence the success of studies in this population group, and the domains of caregiver quality-of-life that warrant intervention. Palliative care is complex, and multiple interventions and supports are required if care is to be managed at home. Home telehealth consultations are a feasible and acceptable means of facilitating a palliative care consultation which can reduce the burden on families at a distressing time.

We have provided the first published framework from expert consensus that defines the components and principles of an early pediatric palliative care consultation. This framework will provide guidance for clinical practice as well as being useful for education and research in this area.

At the time of this study, the neonatal unit was not meeting all of the end-of-life care needs of infants and their families. Care was generally more comprehensive when the palliative care service was consulted.