Monitoring child and parent refusals to enrol in clinical research protocols
Title
Monitoring child and parent refusals to enrol in clinical research protocols
Creator
Gattuso J; Hinds P; Tong X; Srivastava K
Identifier
Publisher
Journal Of Advanced Nursing
Date
2006
Subject
PedPal Lit; Extramural Research Support; N.I.H.; Adolescent Adult Attitude to Health Child; Child Psychology Data Collection/methods Decision Making Female Hematologic Tests Humans Informed Consent Male; Non-U.S. Gov't Sex Factors Terminal Care/psychology; Nursing Research Parents/; psychology Patient Selection Prospective Studies Questionnaires Refusal to Participate/ethnology/; psychology Research Support
Description
AIMS: The aim of this paper is to report the rates and reasons for refusal given by 817 eligible participants from 10 completed and ongoing nursing and behavioural medicine studies in paediatric oncology from 1994 to 2004. BACKGROUND: Eligible participants have the right to accept or decline participation in research studies. Information about rates of refusal and reasons for refusal could be useful in determining participant-perceived burden related to study participation, in accurately estimating the time needed to accrue an adequate number of participants to achieve the study aims, and in interpreting study findings from certain groups of participants. METHODS: A 13-item survey form about study characteristics was completed prospectively for each study included in this report; categories of reasons for refusal were inductively identified and defined using a semantic content analytic technique. RESULTS: The overall rate of refusal was 23.6% (range: 6.7-46.7%). The studies that involved blood sampling or end-of-life decision-making had the highest refusal rates and an instrumentation study had the lowest. Eligible male participants had consistently higher rates of refusal than did females across the 10 studies. Nine categories of refusal were inductively identified, with the most commonly reported reason being the burden of the research methods. CONCLUSION: A careful informed consent process will still result in some refusals. The refusal rates reported here can be used to help future researchers more accurately estimate accrual periods for studies involving blood sampling or investigating sensitive topics in paediatric oncology.
2006
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).
Type
Journal Article
Citation List Month
Backlog
URL Address
Citation
Gattuso J; Hinds P; Tong X; Srivastava K, “Monitoring child and parent refusals to enrol in clinical research protocols,” Pediatric Palliative Care Library, accessed April 24, 2024, https://pedpalascnetlibrary.omeka.net/items/show/13471.