Family and healthcare professionals' perceptions of a pilot hospice at home programme for children: a qualitative study

Background: Parents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the experiences of families receiving a nurse led pilot hospice at home programme and the experiences of healthcare professionals delivering and engaging with the programme. Methods: An exploratory, qualitative study was conducted, including telephone interviews with parents and focus groups and individual interviews with healthcare professionals. All parents of families who received the programme of care between June 2014 and September 2015 and healthcare professionals delivering and engaging with the programme were invited to participate. Results: Seven parents participated in telephone interviews. Four focus groups took place, two with external stakeholders (18 participants in total), one with in-patient hospice staff (13 participants) and one with the hospice at home team (8 participants). Two additional interviews took place with individual stakeholders who were unable to attend a scheduled focus group. Themes from interviews with parents focused on the value of having consistent and expert care. The findings from healthcare professionals centred on communication within and across services, education and training and lone working. Conclusions: The pilot hospice at home programme was welcomed by all those who took part in the study. The programme may be improved by enhanced clarification of roles, enhanced access to multi-disciplinary services, greater communication across services and improved information provision to families.