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Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK.

ABSTRACT: While the majority of childhood cancer clinical trials are treatment related, additional optional research investigations may be carried out that do not directly impact on treatment. It is essential that these studies are conducted ethically and that the experiences of families participating in these studies are as positive as possible.A questionnaire study was carried out to investigate the key factors that influence why families choose to participate in optional nontherapeutic research studies, the level of understanding of the trials involved, and the experiences of participation.A total of 100 participants from six UK centers were studied; 77 parents, 10 patients >16 years, and 13 patients aged 8-15 years. Ninety-seven percent of parents and 90% of patients felt that information provided prior to study consent was of the right length, with 52% of parents and 65% of patients fully understanding the information provided. Seventy-four percent of parents participated in research studies in order to "do something important", while 74% of patients participated "to help medical staff". Encouragingly, <5% of participants felt that their clinical care would be negatively affected if they did not participate. Positive aspects of participation included a perception of increased attention from medical staff. Negative aspects included spending longer periods in hospital and the requirement for additional blood samples. Ninety-six percent of parents and 87% of patients would participate in future studies.The study provides an insight into the views of childhood cancer patients and their parents participating in nontherapeutic clinical research studies. Overwhelmingly, the findings suggest that participation is seen as a positive experience.

SUBMITTER: Errington J

PROVIDER: S-EPMC5031198 | biostudies-literature | 2016 Jul

REPOSITORIES: biostudies-literature

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Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK.

Errington Julie J Malik Ghada G Evans Julie J Baston Jenny J Parry Annie A Price Lisa L Johnstone Hina H Peters Selena S Oram Victoria V Howe Karen K Whiteley Emma E Tunnacliffe Jane J Veal Gareth J GJ

Pediatric blood & cancer 20160301 7

<h4>Background</h4>While the majority of childhood cancer clinical trials are treatment related, additional optional research investigations may be carried out that do not directly impact on treatment. It is essential that these studies are conducted ethically and that the experiences of families participating in these studies are as positive as possible.<h4>Methods</h4>A questionnaire study was carried out to investigate the key factors that influence why families choose to participate in optio ...[more]

PMID: 26928983

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Project description:The rising incidence of infection among youth in sub-Saharan Africa makes HIV-related research among younger people a top priority. There remains, however, a lack of consistent and unambiguous ethical principles and guidance for researchers wishing to conduct HIV studies with adolescents. The overarching aim of our research was to better understand youths' experiences with HIV studies. The present study explored four questions: (1) What strategies are effective for recruiting youth for HIV studies? (2) What motivates youth to participate in these studies? (3) How do study participants perceive HIV testing within the context of a research study? (4) What do participants understand about the risks of study participation? These data are essential to inform guidelines for the responsible conduct of research with young people. We interviewed 82 adolescents (aged 15-19) in Kenya taking part in a study examining ethical issues pertaining to their involvement in HIV-related research. Pursuant to our research questions, we found that direct study recruitment combined with encouragement from female relatives was the greatest facilitator to study enrolment among young people. Most young participants expressed that they were motivated to join the study in order to (1) learn their HIV status (n = 49) and (2) receive HIV-related education (n = 26), even though both are already free and widely available. Participants largely preferred testing in a place they deemed "private," although both the health clinic and home were regarded by adolescents as locations with greater privacy. Adolescents largely did not accurately perceive risks of the study two months after baseline, although they could remember the benefits with great clarity. This work can inform researchers, policymakers, and ethics review committees on approaches to maximize efficiency in recruitment and data collection, and to enhance understanding of risks and benefits in HIV-related research among adolescents. While further research is needed, these data may be used by others conducting HIV research in this region to improve recruitment strategies and more effectively engage and appeal to young people.

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Dataset Information

Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK.

Publications

Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK.

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