J Palliat Care
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Family care giving is important for the quality of life of terminally ill patients and their family members. Although family caregivers are generally eager to provide palliative care, at some point it may become too demanding, and then volunteers can make a difference. This four-study paper presents the experiences of families of terminally ill patients with volunteer support. ⋯ The Internet panel revealed that in the Netherlands the general public is aware that volunteers can provide palliative care support, but many people don't know how to contact these volunteers. We must find ways to extend volunteer support in palliative care in the Netherlands and elsewhere. We must also study further the experiences of caregivers of terminally ill patients with volunteers and others who provide palliative care.
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The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semistructured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. ⋯ Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations.