J Palliat 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.
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Until now, in Belgium at least, no scientific information has been available about which patients are referred to multidisciplinary palliative home care teams (MHCT) and by which caregivers, nor about timing of referral and factors associated with it. ⋯ Timely referral to a MHCT seems to be difficult and not equal for all patients. Referral timing varies largely by age groups and diseases.
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Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. ⋯ These identified priorities will provide guidance and direction for research efforts in Canada, and may prove useful in providing optimal care to patients and families in pediatric palliative care.
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A significant challenge in virtually all caregiving studies is the measurement of burden, particularly within the specific context of palliative care. Existing tools in the caregiving field are not specifically designed for palliative care. A new tool, which specifically assesses family caregivers' (FC) burden within the palliative care context, was systematically developed and validated. ⋯ Social desirability was tested with the Crowne & Marlowe questionnaire (r = -0.24). Sensitivity: Associations were consistent with patients' functional status (ECOG) and FCs' unmet needs. The CBS-EOLC is a reliable and valid measure available in French and English.