Palliative & supportive care
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Palliat Support Care · Dec 2011
Planning with parents for seriously ill children: preliminary results on the development of the parental engagement scale.
The objective of this study was to develop a clinically relevant tool to assess parental engagement in decision making and planning for seriously ill children during palliative care consultations. Although little is known about the structure and process of planning meetings between parents and providers, less is known about the nature of parental engagement as it relates to decision making ability in pediatric end-of-life care. Using attachment and caregiving as a framework, this study clarified important dimensions of parental engagement. ⋯ Parental engagement in decision making is a critical area for study and intervention. If we can support parents in their caregiving executive functions while understanding the psychological and emotional underpinnings of the caregiving system and parental engagement itself, we can move inquiry forward in understanding parental needs for intervention during this most profoundly challenging time.
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Palliat Support Care · Dec 2011
Perspectives of staff providing care at the end of life for people with progressive long-term neurological conditions.
This article examines the views and opinions of staff from a larger study exploring the palliative and end-of-life care needs of patients with progressive long-term neurological conditions (PLTNC). ⋯ This article adds to a small body of literature that seeks staff views and opinions about the rewards and challenges of providing palliative and end-of-life care to people with complex needs arising from long-term conditions. Although this article focuses primarily on the challenges of caring for people with neurological conditions, many issues reported are of wider relevance for the delivery of palliative and end-of-life care in other conditions.