Children affected by genetic conditions in end-of-life care. Part 2: findings and discussion

Abstract

Children's hospice nurses are required to care for children and families affected by life-limiting genetic conditions and many have complex support needs, which require an insight into issues associated with genetics. This study demonstrates that more education about genetics is required by children's hospice nurses. The focus of educational courses should be on the psychosocial aspects of care, which are needed in the context of hospice care, because this is considered the most important and where nurses were slightly more confident.

Nurses’ competence in genetics: a mixed method systematic review

“…Participants were hospice nurses (Metcalfe et al. 2008, 2009), hospital nurses (Terzioglu & Dinc 2004), primary care practice nurses (Bankhead et al.…”

Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals

“…Of the total 97 articles on pediatric palliative care, there were 55 articles on clinicalpractice,[2022293335–404244–5052535557596063–6870747577808183–869295–100103106–110,112113] 8 articles on education,[30697376878890114] 7 articles on research,[2428435661104105] and 27 articles on administration. [212325–273132344151545862717278798289919394101102111115116] The relative reporting prevalence for the four categories is provided in Figure 5.…”

“…Of the 55 articles on clinical practice, 40 were original articles[202933353739404245464852, 57596063–6668707475778083–8597–100103106–110112113] and 15 were review articles. [2236384447495355678186929596109] There were six original articles[6973768790114] and two review articles[3088] among the eight articles on education, and two original articles,[56] and six review articles[24284361104105] among seven articles on research, respectively.…”

“…There were 46 studies that used qualitative methods[212333373940424546485658–606364–66686971–73767879828388949799–103106107110111113–116] and 17 studies that used quantitative methods[202935525770747577808485879098108112] among the 63 original articles. Among the 34 review articles, 33 articles were narrative reviews[222425–2830–323436384143444749–5153–5561626781868991–939596104109] and 1 was a systematic review.…”

Ethical Implications of Newborn Screening, Life-Limiting Conditions, and Palliative Care

“…Additionally, education for healthcare professionals in all aspects of palliative care is essential for the delivery of optimal ongoing care (Jones et al, 2007). Finally, adequate and continual support for healthcare professionals should be incorporated into palliative care programs (Kane, 2006;Metcalfe, Pumphrey, & Clifford, 2009;Rogers, Babgi, & Gomez, 2008;Rushton et al). 3.…”