Impact of research participation on parents of seriously ill children.

Title

Impact of research participation on parents of seriously ill children.

Creator

Steele R; Cadell S; Siden H; Andrews GS; Smit QT; Feichtinger L

Publisher

Journal Of Palliative Medicine

Date

2014

Subject

Biomedical Research; Child Health Services; Adolescent; Adult; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Palliative Care; Parents/psychology; Severity Of Illness Index; Surveys And Questionnaires; Young Adult

Description

BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. OBJECTIVE: To obtain parents' perceptions about their experience of participating in one of two research studies. DESIGN: Descriptive, quantitative survey. SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. MEASUREMENTS: Researcher-designed Impact of Participation questionnaire. RESULTS: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. CONCLUSIONS: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.

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

n/a

PMID

PMID: 24871891

Citation

Steele R; Cadell S; Siden H; Andrews GS; Smit QT; Feichtinger L, “Impact of research participation on parents of seriously ill children.,” Pediatric Palliative Care Library, accessed July 27, 2021, https://pedpalascnetlibrary.omeka.net/items/show/11080.

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