Palliative medicine
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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.
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Palliative medicine · Mar 2020
Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study.
The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families. ⋯ As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.
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Palliative medicine · Mar 2020
Multicenter StudyRegret and unfinished business in parents bereaved by cancer: A mixed methods study.
Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited. ⋯ Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.
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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.