Publication
Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study
Bilodeau M, Dussel V, Wolfe J · Pediatric Blood and Cancer · 2019
Little is known about the experience of parents receiving results of quality-of-life research in pediatric advanced cancer. The PediQUEST study participants who indicated interest in results during enrollment were mailed summarized findings and the Disseminating Quality-of-Life Research Questionnaire. Respondents (86%,12/14) reported feeling more than "a little" recognized, grateful, or satisfied to receive results. Concurrently, 43% (6/14) endorsed feeling more than "a little" sad, confused, or anxious. Nonetheless, 81% (13/16) prefer to be informed in the future. Although parents experience a spectrum of strong emotions, our findings suggest quality-of-life study results should be shared.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.