Table 1.

Characteristics of the included studies (n = 3).

Authors	Date	Country	Study design	Study aim	Tool used	Intervention description	Setting	Participants	Relevant outcome measures	Findings	Quality score 11
Bradford et al. 7	2012	Australia	Prospective exploratory cohort study	To evaluate the home telehealth programme (HTP) which included measuring feasibility, acceptability, parental and clinician satisfaction with care, and caregiver quality of life.	Logitech Vid (video), standard telephone (audio)	The HTP is used to provide specialist consultations directly to patients and their caregivers in the family home, consultations that families may not otherwise receive because of the distance between the family home and the hospital. HTP consultations involve symptom management, changes in patient condition and subsequent management options, as well as the provision of emotional support to caregivers.	One paediatric palliative care service (PPSC) based within a Children’s hospital in Australia	Fourteen primary caregivers of patients referred to, and expected to be cared for by, the paediatric palliative care service for the duration of their palliative care	Quality of Life in Life Threatening Illness-Family (QOLLTI-F) instrument	Following a 10 week intervention period, the descriptive analysis of the quality-of-life data that was collected showed no differences in QOLLTI-F scores between caregivers in control and intervention groups.	Fair (27/36)
Harris et al. 8	2016	UK	Longitudinal, multisite mixed methods evaluation	To evaluate the use of MyQuality within a children’s hospice population by assessing acceptability of the tool and patterns of usage, exploring families’ perceptions of the tool and measuring self-scored levels of family empowerment.	Bespoke website (my-quality.net)	MyQuality allows families to identify, describe, prioritise and monitor the issues that most impact on their quality of life, and to share this information with their health and social care team. The tool can be accessed via the internet and is free of charge. The data entered, and access to that data, is controlled by the patient/carer. The child’s nominated key professionals can be given access to their graphs, and trigger points can be set up to instigate early review of symptoms that fall outside set limits.	Three non-National Health Service children’s hospices in the UK	Thirty-two families who attended the hospice and had no immediate events making an invitation inappropriate (such as imminent death, social or other personal issues).	Family empowerment scale (FES), semi structured interviews about their views of the intervention	Mean scores increased over the 3 month time period (3.45–3.85) and showed a significant increase (p ⩽ 0.01) overall, and across all but the community domain whether all or only paired data were compared. Themes from qualiative data consisted of: Acceptability of use of website; empowerment; communication; and clinical value. Families who had used the tool had felt that it had helped give them a voice and given them some control over access to their personal information. There was evidence that some families perceived a significant shift in power during consultations, enabling them to share information and communicate about issues affecting their current QOL.	Good (30/36)
Weaver et al. 16	2020	USA	Two time point, longitudinal case series study	Determine whether telehealth inclusion of a familiar paediatric palliative care provider during the first two home-based hospice visits was acceptable to children, families, and adult-trained home hospice nurses in rural settings.	Zoom videoconferencing/FaceTime	The telehealth intervention included a hospital-based palliative care provider familiar to the family partnering with a rural, adult-trained home hospice nurse for the nurse’s first two visits to the child’s home after discharge from the free-standing children’s hospital. Each study participant received a standard of care in person visit with a home hospice nurse from an adult-trained hospice team within 48 h of arrival to home after hospital discharge. The study intervention was the additional presence of the inpatient paediatric palliative care physician who had been following the child during hospitalisation and then joining the home hospice nurse’s in-person visit as a telehealth presence using a FaceTime screen. The same intervention occurred on day 14 at home.	Home hospice in rural Midwest, USA	Fifteen children aged 0–18 years, their family caregivers and nurses referred to the hospital-based paediatric palliative care team at the free-standing children’s hospital, and enrolling on home hospice services within a rural zip code in the state of Nebraska at the time of discharge from the hospital.	Open-text comment box for paediatric-age hospice recipients to record their perspective on telehealth visits	Themes from qualitative data consisted of: Being remembered (child reports liking the feeling of not being forgotten by hospital staff); medical knowledge and care planning (child values anticipatory symptom management, discussing medical questions, and reviewing the care plan together; comfort of home (child cherishes the cosiness and comforts of home over the hospital; being known (child appreciates the personalised care available through familiarity and shared history); continuity and introduction (child welcomes new care team member in context of formative introduction and information-sharing); and peace of mind (child finds assurance in the family caregiver and nurse receiving shared education for confidence in ongoing care).	Good (30/36)