Parental decisions on children participating in research

Abstract

Severity of the child's illness appeared to determine the parent's decision. Involvement and assistance of non-research nursing and medical staff and previous introductions to the researchers are helpful. The timing and setting for the consent process should be selected carefully. Adequate, accessible study information for parents and children contributes to successful recruitment of participants.

Facilitation of child health research in hospital settings: The views of nurses

“…The current study has highlighted the need for training in more general research and governance procedures, to tackle misconceptions about the research process and ameliorate concerns about professional and legal retributions if research “goes wrong.” This in turn may improve the recruitment outcomes of clinical research, as suggested by Elemraid et al. (). The request and need for an accessible and dedicated research team to support, communicate and feedback results was also reported throughout the questionnaire.…”

“…The emergence of ethics as a barrier in the current study may be explained by the fundamental difference between the nurses using the results of nursing research in their practice and the implementa- suggested by Elemraid et al (2013). The request and need for an accessible and dedicated research team to support, communicate and feedback results was also reported throughout the questionnaire.…”

“…Much has been written about parental views of children's clinical research (Elemraid et al, 2013;Shilling et al, 2011;Woodgate & Yanofsky, 2010) and to a lesser extent, those of clinicians, healthcare professionals acting as Principal Investigators (Rendell, Merrit, & Geddes, 2007) and radiation therapists (Augustin et al, 2008;Sale, 2007). Few studies have examined the views of nurses who look after children in hospital towards this research, or the factors influencing their willingness to be active research facilitators.…”

Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) – work package II: palliative care for pediatric patients

“…Although we would like to include young children and adolescents in our research, it will be necessary to take into consideration that they are all suffering from life-limiting diseases. Assessing a child’s ability to understand and make decisions whether to participate in research is difficult [35]. In the ELSAH study, every study participant will have to sign an informed consent form, and in the case of minors, an additional informed consent form will have to be signed by the child’s custodians (usually both parents).…”

Factors Affecting the Participation of Physically Disabled Children and Young People in Out-of-School Activities in the United Kingdom: A Qualitative Study

“…They have a much higher degree of adult intervention yet less of a voice, certainly in terms of research (Dickins, 2011); therefore, this study successfully reached out to PDC&YP through gatekeepers. Families are powerful advocates but PDC&YP must also be offered opportunities to speak of their experiences and their views are captured in this study (Elemraid et al, 2013;VIPER Voice, Participation, Empowerment, Research, 2012).…”