Ethical issues in social research: difficulties encountered gaining access to children in hospital for research

Abstract

Finally, some suggestions for facilitating the access process are discussed. They include the sensitive and appropriate application of research governance frameworks to social research - including studies within health care settings. Ethical considerations and adequate protection of children are vital but, the authors argue, wherever possible children themselves should be encouraged to decide whether or not to participate in research. In addition, unnecessarily complex access procedures may adversely affect research outcomes.

La recherche auprès des enfants

“…Ainsi que le note pertinemment Antoine Garapon dans un texte intitulé « Droit et morale dans une démocratie d'opinion » : « Jamais le besoin de normes a été si grand, jamais non plus la suspicion à l'égard des institutions n'a été si vive » (cité dans Doucet, 2000, p. 34). À cet égard, plusieurs chercheurs (Stalker et al, 2004 ;Ward, 1999) illustrent bien comment il est difficile de réaliser des entretiens avec des enfants hospitalisés. Nombreuses sont les étapes à franchir avant de pouvoir les rencontrer.…”

Challenges of Participatory Qualitative Research in a Malaysian and Australian Hospital

“…Beyond these constraints, the real challenges are linked to the sample population. For the researcher, the challenges include acquiring ethical approval, acquiring access, negotiating gatekeepers, recruiting participants and negotiating the medical culture of a hospital and its impact on the research process (Alderson, 1993(Alderson, , 1995Bricher, 1999Bricher, , 2000Morison et al, 2000;Stalker et al, 2004).…”

“…The need to negotiate a hierarchy of 'gatekeepers' to access children in hospitals and the difficulty of this (Stalker et al, 2004) -Managing ethical considerations, power relations between researcher and participants and empowering children in the research process (Alderson, 1993(Alderson, , 1995Bricher, 1999Bricher, , 2000Morison et al, 2000) -The importance of the social and physical context of the interviews and the need for privacy (Mauthner, 1997;Miller, 2000;Morison et al, 2000) -The challenging nature of the research topic for participants and the perceived benefits and threats of the research (Morison et al, 2000) -The influence of parents or 'significant adults' on children's participation (Morison et al, 2000;Sandbaek, 1999) All of these considerations remain relevant to participatory research in health care contexts and most of these challenges are relevant to the experiences of both Said and Bishop in their respective research projects.…”

Conducting a paediatric multi‐centre RCT with an industry partner: Challenges and lessons learned

“…The research team felt it was important to consider the children's wishes and gain their informed assent as, although parent proxy consent is often seen as sufficient, parent and child views may differ. 16 As a result, the research team advocated for all sites to approve child assent as well as parental consent. New Zealand did not require child assent; however, the HDEC allowed the researcher to gain assent alongside parental consent for consistency amongst the various sites.…”