Pediatric Palliative Care Online: The Views of Health Care Professionals

Abstract

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. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. 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. Resume I l.'etude a pour objet d'evaluer Ie role d'une ressource en ligne destlnee aux enfants mourants, aux membres de leur famille, ainsi qu'aux professionnels de la sante, et ce du point de vue des specialistes en soins palliatifs pedlatrlques, On a effectue des entrevues ssml-structurees aupres de 12 leaders du domaine des soins palliatifs pediatriques a l'echelle nord-arnericaine, afin de decouvrir leurs perceptions et attitudes envers differents aspects des ressources Internet elaborees a I'intention des enfants mourants et de leurs soignants. Les personnes lnterroqees etaient d'avis qu'une ressource en ligne pourrait favoriser une forme d'expression nouvelle, la creation de liens entre des personnes vivant une experience unique, de marne qu'une hausse du niveau de sensibilisation et de soutien. On devra relever cependant de grands defls, tels que l'accessibllite, la surveillance et Ie necessaire de mise ajour du site. Au nombre des themes cles, mentionnons l'acces, I'information et I'anonymat. Les donnees recueillies laissent supposer que la mise au point de ressources sur Internet pour les enfants mourants et les membres de leur famille pourrait avoir du merits. Si Ie projet devait se realiser, il serait necessaire de conduire au prealable une etude de faisabilite qui permettrait de mieux determiner Ie bien-fonda d'un tel site Internet pour ces populations vulnerables.

Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals

“…[212325–273132344151545862717278798289919394101102111115116] The relative reporting prevalence for the four categories is provided in Figure 5.…”

“…[2236384447495355678186929596109] There were six original articles[6973768790114] and two review articles[3088] among the eight articles on education, and two original articles,[56] and six review articles[24284361104105] among seven articles on research, respectively. Of the 27 articles on administration, there were 15 original articles[212358717278798294101102111115116] and 12 review articles. [252631323441515462899193] The comparison of article types between four categories of pediatric palliative care articles is provided in Figure 6.…”

“…There were 46 studies that used qualitative methods[212333373940424546485658–606364–66686971–73767879828388949799–103106107110111113–116] and 17 studies that used quantitative methods[202935525770747577808485879098108112] among the 63 original articles. Among the 34 review articles, 33 articles were narrative reviews[222425–2830–323436384143444749–5153–5561626781868991–939596104109] and 1 was a systematic review.…”

e-Health in Pediatric Palliative Care

“…Other studies have focused on documenting and evaluating palliative care resources online. Ens et al 25 2008 evaluated online resources for children with life-limiting illnesses, their families, and health care providers. Results from qualitative interviews with 12 pediatric palliative care experts found that reviewed online resources allow for increased education and support; however, these online resources require the consumer to have computer access, lack monitoring, and present problems with anonymity.…”