Palliative medicine
-
Palliative medicine · Mar 2020
Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study.
Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described. ⋯ Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.
-
Palliative medicine · Mar 2020
Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review.
Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises. ⋯ Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.
-
Palliative medicine · Mar 2020
Multicenter StudyHospice nurses request paediatric-specific educational resources and training programs to improve care for children and families in the community: Qualitative data analysis from a population-level survey.
Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are not well known. ⋯ Hospice nurses self-report inadequate exposure to educational resources and programs, in conjunction with a strong desire for increased paediatric-specific training. Identification of targetable gaps should inform the development of educational resources, policies and other supportive interventions to improve delivery of care to children and families in the community.
-
Palliative medicine · Mar 2020
Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study.
Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns. ⋯ This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.