Dr. Shuichi Ozono, MD, PhD, Associate Professor, Department of Pediatrics, Kurume University
Dorman, J., Raffin Bouchal, S., daSilva Curiel, K., & Miller, M. (2022). Family experiences with
palliative care in freestanding paediatric hospices: a scoping review. BMJ Support Palliat Care.
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With the growing number of paediatric hospices in the UK and North America, approximately 42% of children with life-threatening conditions die in hospice or palliative care beds. While barriers to accessing and providing paediatric palliative care (PPC) have been identified, research on the needs and experiences of children undergoing palliative care and their families has just begun. In fact, research exploring family experience in PPC is limited, and no known review has specifically investigated PPC within a free-standing paediatric hospice. What is the best way to assess the range and depth of available information to understand the research gaps in free-standing paediatric hospice care? Dorman et al. (2022) attempted to answer this question using a scoping review.
To find literature relating to family experiences in PPC throughout the end-of-life trajectory, including grief and bereavement, the authors conducted a scoping review following Munn et al.’s guidelines to frame the following research question: What is the experience of families in free-standing paediatric hospices? They completed searches in seven databases (Academic Search Complete, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed, and Web of Science). Grey literature was also searched for relevant results.
Among a total of 4250 retrieved studies, 10 met the review criteria, and most of the studies were conducted in the UK. Three major themes were identified. First, families seek more support as the patient nears end of life or as they experience grief and bereavement. Their specific needs were categorised into five subthemes: supportive decision-making, individualised family support, family education needs, care accessibility and transitions, and grief and bereavement. The second major theme was hospice experience. Although most families perceived the hospice experience as positive, some families expressed feeling trapped and socially isolated. Improved access to hospice services, including more information about the organisation and available programmes, more flexible booking systems, and access to hospice services when needed were highlighted as potential solutions. The third major theme was future research. Since few studies have explored the paediatric end-of-life population’s needs and goals, removing barriers that prevent families and children at the end of life from participating in research needs to be a priority. Further exploration into grief and bereavement support provided by individual hospices is needed.
In 2020, approximately 3000 individuals aged <20 years died from illness in Japan (1), and the number of the patient in life-threatening conditions is increasing year by year. Most children are admitted to general hospitals or rehabilitation facilities for medical care. Most children and families receive multidisciplinary palliative care during hospitalisation, because parents seek more effective medicine even in an end-of-life stage. As medical resources vary in each facility, some hospitals are unable to provide home-like support for children with life-threatening conditions and their families. Approximately, 20% of childhood cancer patients died in their home, supported by home medical care (2). Although home medical care in Japan is well-organized, it lacks the support for decision-making, education, and grief & bereavement. Only two free-standing children’s hospices, which mainly provide respite care, have been established by Non-Profitable-Organization in Japan. However, the support that they can provide is limited. In the near future, support programmes should be developed to meet the specific needs of PPC, including grief and bereavement. To expand free-standing children’s hospice worldwide, it is necessary to discuss it from a global perspective, taking into account the cultural, economic, and social backgrounds of patients and their families.
The research findings provide useful data for individualised, sensitive, and supportive care at end-of-life in a paediatric hospice. Medical staff should be aware of the needs of the families and make an effort to support them throughout their end-of-life journey in a home-like setting. While free-standing children’s hospice efforts are limited to a few regions globally, this scoping review identified their general needs and experiences. However, further studies are needed to better support families and children at the end of their lives.
- Ministry of Health, Labour and Welfare. Annual mortality rate (100,000 population), by sex and age (5-year age group). In Annual Report of Vital Statistics. (Webpage: https://www.mhlw.go.jp/toukei/saikin/hw/jinkou/geppo/nengai20/dl/gaikyouR2.pdf; p29-31, 2021
- Okamoto Y, et al. Current status of end-of-life care for pediatric cancer patients. J Jpn Pediatr Soc 126(2); 281,2022