Stories of paediatric palliative care: a qualitative study exploring health care professionals’ understanding of the concept

Abstract

Background By sharing patient stories, health care professionals (HCPs) may communicate their attitudes, values and beliefs about caring and treatment. Previous qualitative research has shown that HCPs usually associate paediatric palliative care (PPC) with death or dying and that they find the concept challenging to understand and difficult to implement. Attending to HCPs’ stories may provide a richer account of their understanding of PPC. Thus, the aim of this study was to explore PPC stories narrated by HCPs to gain increased insight into their understanding of what PPC entails. Methods This qualitative study collected data from four focus group interviews with 21 HCPs from different units in two Norwegian hospitals. Stories told by the HCPs to illustrate their comprehension of PPC were analysed following thematic analysis procedures. Results Four themes were identified illustrating what PPC meant to the participants: creating spaces for normality, providing tailored support for the family, careful preparations for saying goodbye and experiencing dilemmas and distress. The stories centred on family care, particularly relating to dramatic or affective situations when the death of a child was imminent. Conclusion The stories reflect how the HCPs view PPC as a specific field of health care that requires particular professional sensitivity, including good communication, collaboration and planning. Thus, the HCPs in this study demonstrated knowledge about the core qualities needed to succeed in PPC. However, similar to previous research, the stories illustrate that how HCPs speak about PPC is strongly associated with end-of-life care, and by that the HCPs do not capture the breadth of the PPC concept. The findings highlight the importance of increasing knowledge about the meaning and content of PPC among HCPs in order to maintain quality of life for all children with life-limiting or life-threatening conditions throughout their illness trajectory.

Children with palliative care needs – the landscape of the nordic countries

“…A common problem in PPC, with consequences for this Nordic overview, is the various understanding and often nonexisting uses of the term PPC [ 16 , 17 , 47 ]. The often-heterogeneous understanding and use of PPC as a term makes it challenging to identify evidence regarding the child population in need of palliative care.…”

“…Most studies from the Nordic countries are conducted as qualitative, epidemiological, or observational studies and aim to describe the population and the needs of the child throughout the illness trajectory [25], their families [3,[27][28][29], and healthcare professionals working within PPC [16,17,30]. Common designs include crosssectional studies, registry-based studies, and qualitative interview-or focus-group studies.…”

“…International policies state that healthcare services should offer palliative care from an interdisciplinary team of health care providers, and according to the child's and families' needs [5,13,14], because palliative care services can be associated with quality of life among children and families [15]. However, there remains uncertainty about whether the care reaches all those in need, which may be because of factors such as lack of knowledge about what palliative care or PPC is [16][17][18], myths and assumptions of PPC only being relevant at end-of-life as an example [19], and lack of resources and organizational structures [20].…”

Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs—a scoping review

“…Hence, there is a large potential to increase and improve the use of PROMs (including proxy-reporting) to better capture the needs and outcomes of CAYAs with progressive neurodegenerative or metabolic conditions [ 12 , 61 ]. The misconception of PPC as exclusively end-of-life care may be another reason why some groups of patients have rarely been included in PROM research [ 146 – 148 ].…”

Atuação frente ao paciente pediátrico em cuidados paliativos

“…Embora sejam necessárias mais pesquisas, os testes iniciais do modelo pelos autores sugerem que o uso de modelos e estruturas reflexivas especializadas pode ajudar a facilitar essas discussões nos cuidados paliativos infantis. Riiser et al (2022) As histórias refletem como um campo específico de cuidados de saúde que requer sensibilidade profissional particular, incluindo boa comunicação, colaboração e planejamento. Assim, os HCPs neste estudo demonstraram conhecimento sobre as principais qualidades necessárias para ter sucesso no PPC.…”