Healthcare Design - May 2014 - 107

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CHALLENGING RESEARCH: COMPLETING PARTICIPATORY SOCIAL RESEARCH

RESEARCH

wenty years after the United Nations Convention on the Rights of the
Child (1989), which enshrined the right of children to participate in processes that have the capacity to aﬀect their lives, researching the experience of children and adolescents in hospitals and healthcare environments is
still extremely diﬃcult. There are some overarching challenges. A considerable
level of skepticism still persists in medical circles regarding social research. In
particular, there is resistance to the idea that subjective, experiential knowledge
produced by social research is as valid and rigorous as the more traditional quantitative research produced in medical ﬁelds. This leads to a perception that social
research, and in particular qualitative research, is of dubious value in medical circles (Abma, 2006). As a result, social research in medical contexts still struggles
to receive funding (Read & Maslin-Prothero, 2010), which delays the accumulation of evidence to the contrary and allows these misconceptions to continue.

Challenging Research: Completing
Participatory Social Research
with Children and Adolescents
in a Hospital Setting
Katherine Bishop, PhD

Enhancing Healthcare Environments.
mennts.
Improving Healthcare Outcomes.
es.

ABSTRACT
OBJECTIVE: A discussion of the challenges to completing participatory
social research with children and adolescents in a hospital setting.
BACKGROUND: Beginning with the dominant medical culture of hospitals, coupled with a persistent skepticism of social and in particular,
qualitative research and its contribution to knowledge in medical circles,
restrictive contextual challenges also include attitudinal, methodological, and logistical considerations. Together, these challenges hamper
good participatory research practice and the capacity to maintain qualon in research, which
ity data, as well as impede children's participation
has the capacity to contribute to healthcare design,
n, policy, and planning
processes.
METHODS: Two studies in pediatric settings in Australia,
ustralia, one of which
was completed in 2008 and the other which was discontinued in 2011,
provide the basis for this research discussion. The discussion addresses

AUTHOR AFFILIATIONS: Katherine Bishop is a Senior Lecturer in the Faculty
of Built Environment at the University of New South Waless in Sydney, Australia.

the issues that persist in inhibiting the completion of participatory social
research and the resulting impacts on research, children's right to participate, and the volume of evidence that is ultimately available from children's perspectives to support and inform healthcare design, planning,
and policy in pediatric settings.
CONCLUSIONS: Recommendations for changes that could strengthen and improve this research experience include building awareness
of the potential value of this research; increasing its influence; building the capacity and knowledge of gatekeepers, ethics committees, and
researchers working in this context; and recognizing and valuing children's competence and participation.
KEYWORDS: Evidence‐based design, hospital, methodology, patients,
pediatric

PREFERR
PREFERRED
RED CITATION: Bishop, K. (2014). Challenging research: Completing
participato
or y social research with children and adolescents in a hospital setparticipatory
ting. Health
Healtth
th EEnvironments
nvironments Research & Design Journal, 7(2),
7 76-91.

CORRESPONDING AUTHOR: Katherine Bishop, k.bishop@unsw.edu.au;
bishop@unsw.edu.au;
+612 93857648.

Health Environments Research
rch
& Design Journal (HERD)
is an interdisciplinary,
d
peer-reviewed journal dedicated
to enhancing the knowledge
and practice of evidence-based
healthcare design by:

In particular this is disadvantageous for populations engaging with the health
system who are not formally part of it, such as patients. It means that the experience with the healthcare system of these groups is given little or sporadic priority in research. Abma (2006) states that at present, individual researchers and
funding institutions are deﬁning research agendas in health research. She states
that the "appreciation of the patient's narrative is complicated by the low status
of experiential knowledge compared to the rational scientiﬁc knowledge of professionals" (p. 425) in health. Oeye, Bjelland, & Skorpen (2007) also argue that
"the institutional review system [is] prejudiced in favor of research methodologies that mimic epidemiology and kindred "objective" approaches that deal with
humans as detached social atoms" (p. 2297).
There are three additional substantial challenges in conducting participatory
social research with children and adolescents. The ﬁrst is linked to the organizational context and negotiating the medical culture of a hospital and its impact on
the research p
process. The second is linked to the type
yp of research in qquestion-
participatory social research. And the third is linked to the sample population
and the surrounding community's attitudes about them. Children and adolescents are rarely participants in research because of the challenges researchers face
in accessing this patient population. These challenges are not new but they persist and in combination these levels of challenge, are overwhelming and do much
opportunities
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design.

Background
To understand the context of the discussion it is necessary to brieﬂy consider the
history of participatory social research with children, the experience of complet-

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