Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study

Title

Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study

Creator

Bilodeau M; Dussel V; Wolfe J

Identifier

Publisher

Pediatric Blood and Cancer

Date

2019

Subject

dissemination; pediatric oncology; practice; quality of life; research results

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

Oncology 2019 List

Collection

Citation

Bilodeau M; Dussel V; Wolfe J, “Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study,” Pediatric Palliative Care Library, accessed March 28, 2024, https://pedpalascnetlibrary.omeka.net/items/show/16933.