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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Biography Historical Article
"Those who knew the ways of water"--Bruce Dawe and the nature of palliative care.
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Comment Review
Is there a role for palliative care in progressive pediatric neuromuscular diseases? The answer is "Yes!
The consequences of prolongation of survival can be oversimplified, for example, by equating technologically prolonged survival with indefinitely prolonged high quality of life. When this oversimplified view is embraced, the prognosis of ultimately fatal diseases like DMD may be viewed with unrealistic optimism and palliative care may seem irrelevant or misguided. However, we have shown that the sequelae of prolonged survival are complex. ⋯ Also, the sequelae of prolonged survival can negatively affect a wide variety of stakeholders, including patients and their families, medical professionals, and society. It is our view that, when the implications of prolonged survival are examined carefully, their complexity is revealed, and the potential for palliative care to provide support and to relieve suffering in prolonged survivors of progressive NMDs becomes apparent. Thus, we advocate development of an integrative care model for patients with progressive NMDs, blending technological therapies with adoption of palliative strategies as patients approach end of life.
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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.