Journal of pain and symptom management
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J Pain Symptom Manage · Mar 2022
Factors Associated With Quality of Life in Children Receiving Pediatric Palliative Care.
Since pediatric palliative care (PPC) aims to improve the health-related quality of life (HRQoL) of children with life-limiting conditions (LLC), assessment of their HRQoL and identification of its determinants is crucial. ⋯ The HRQoL of children with LLC receiving PPC differed among underlying disease categories. Lower HRQoL was associated with more caregiver depressive symptoms. These findings suggest the needs for optimized intervention in palliative care for children with nonmalignant conditions and family-centered intervention to address caregivers' psychosocial problems.
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J Pain Symptom Manage · Mar 2022
Beyond Advance Directives: Addressing Communication Gaps and Caregiving Challenges at Life's End A paper for submission to the Journal of Pain and Symptom Management.
The premise of advance directives and care planning is to help people articulate and document their wishes so surrogate decision-makers and providers can honor them. However, beyond the completion of such a document, underlying challenges are often unaddressed OBJECTIVES: The overall purpose of the study was to investigate how communication, including but not limited to the completion of advance directives, and caregiving influenced family caregivers' experiences. Communication gaps and caregiving challenges that were unaddressed by advance directives are presented. ⋯ A majority of had an advance directive, yet caregivers expressed feeling unprepared for decision-making, caregiving and discussing it with the dying person. The advance directive and care planning process fell short of providing needed communication, knowledge and preparation; it can be an opportunity for teaching, learning, preparing and supporting families at life's end.