Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives

Abstract

BackgroundNon-specialist palliative care, as it is delivered by general practitioners, is a basic component of a comprehensive palliative care infrastructure for adult patients with progressive and far advanced disease. Currently palliative care for children and adolescents is recognized as a distinct entity of care, requiring networks of service providers across different settings, including paediatricians working in general practice. In Germany, the medical home care for children and adolescents is to a large extent delivered by general paediatricians working in their own practice. However, these are rarely confronted with children suffering from life-limiting diseases. The aim of this study was therefore to examine potential barriers, incentives, and the professional self-image of general paediatricians with regard to paediatric palliative care.MethodsBased on qualitative expert interviews, a questionnaire was designed and a survey among general paediatricians in their own practice (n = 293) was undertaken. The survey has been developed and performed in close cooperation with the regional professional association of paediatricians.ResultsThe results showed a high disposition on part of the paediatricians to engage in palliative care, and the majority of respondents regarded palliative care as part of their profile. Main barriers for the implementation were time restrictions (40.7%) and financial burden (31.6%), sole responsibility without team support (31.1%), as well as formal requirements such as forms and prescriptions (26.6%). Major facilitations were support by local specialist services such as home care nursing service (83.0%), access to a specialist paediatric palliative care consultation team (82.4%), as well as an option of exchange with colleagues (60.1%).ConclusionsAltogether, the high commitment to this survey reflects the relevance of the issue for paediatricians working in general practice. Education in basic palliative care competence and communication skills was seen as an important prerequisite for the engagement in paediatric palliative home care. A local network of specialist support on site and a 24/7 on-call service are necessary in order to facilitate the implementation of basic palliative care by paediatricians in their own practice.

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

“…Many studies have described the key features associated with providing home-based palliative care to children with cancer from the parent's perspective, health care professionals' perspective, and/or by reviewing the child's medical information [17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32] . On the other hand, the experiences of GPs with respect to home-based palliative care in children have received relatively little attention 27 30 31 .…”

The needs of professionals in the palliative care of children and adolescents

“…German general pediatricians [13], demonstrating a high disposition to engage in palliative care and to involve specialist PPC consultation teams.…”

“…The discomfort related to the term "palliative" and insufficient communication skills are well known difficulties or even barriers to the provision of PPC [4,5,24,30]. To overcome these, education in basic palliative care and communication skills in addition to PPC specialist support on site have been highlighted in previous studies [13,28]. Another reason for discomfort in communication about dying and death could also be related to moral distress on the part of the HCPs themselves [2,32]; however, to confirm the latter, a more detailed study approach would be needed.…”

The role of nursing in pediatric palliative home care – Experiences from Lower Saxony, Germany

“…This instrument was based on an established questionnaire which had been developed in a survey with resident pediatricians in North-Rhine Westphalia (NRW), another German federal state [15,16] , and a review of the literature [17][18][19][20][21] . It comprises four thematic areas.…”