Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

<p>Abstract</p> <p>Background</p> <p>In North-Rhine Westphalia (Germany) a pilot project for an extensive service provision of palliative care for children and adolescents has been implemented. Accompanying research was undertaken with the aim to assess the status quo of service delivery at the outset of the project and to evaluate the effects of the pilot project. As part of the research, barriers and needs with respect to paediatric palliative home care in the target region were explored.</p> <p>Methods</p> <p>Semi-structured interviews with 24 experts in the field of paediatrics, palliative and hospice care have been conducted and were analysed by qualitative content analysis.</p> <p>Results</p> <p>Four main categories emerged from the interviews: (1) specific challenges and demands in palliative care for children and adolescents, (2) lack of clear legal and financial regulations, (3) gaps in the existing care delivery, and (4) access to services. Generally the interviews reflected the observation that the whole field is currently expanding and that certain deficits are temporary barriers that will be resolvable in the medium-term perspective.</p> <p>Conclusions</p> <p>Predominant barriers were seen in the lack of clear legal and financial regulations which take into account the specific challenges of palliative care in children and adolescents, as well as in a shortcoming of specialist services for a local based care provision throughout the federal country.</p

Identifying the key elements of an education package to up-skill multidisciplinary adult specialist palliative care teams caring for young adults with life-limiting conditions: an online Delphi study

OBJECTIVES: To collect the views of experts to inform the development of an education package for multidisciplinary adult specialist palliative care (SPC) teams caring for young people with life-limiting conditions. METHODS: A modified online Delphi process collated expert opinion on format, delivery and content of an education package to up-skill adult SPC teams. Round 1 participants (n=44) answered free-text questions, generating items for Round 2. In Round 2, 68 participants rated the extent to which they agreed/disagreed with the items on 5-point Likert-type scales. Median and mean scores assessed the importance of each item. IQR scores assessed level of consensus for each item; items lacking consensus were rerated by 35 participants in Round 3. RESULTS: In the Delphi, consensus was reached on a range of suggested formats, on who should deliver the training, and on several clinical, psychosocial and practical topics. CONCLUSIONS: Development of a continuous/rolling programme of education, tailored for content and mode of delivery and incorporated into working practice is recommended. As a direct outcome of the results of this study, a series of six linked study days has been established, focusing specifically on the issues around caring for young adults with life-limiting conditions and palliative care needs

Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: Evidence to guide the development of a palliative care service

Objective: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. Design: A two-phase combined quantitative and qualitative study. Setting: Western Australia. Participants: 134 parents and 20 service providers. Results: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child\u27s condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child\u27s nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. Conclusion: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care