The Creating Space Project: Young People’s Voice in Healthcare

Neufeld, Michael Todd
Conn, Cath
Water, Tineke
Nikolai, Jennifer
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Doctor of Health Science
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Auckland University of Technology

Introduction: The legal mandate set out in the United Nations Convention on the Rights of the Child (UNCRC) ( 1989) states that every child has the right to express their views freely in matters that affect them and to have those views considered. In Aotearoa New Zealand, representation of the perspectives of young people in healthcare policy remains limited and generally tokenistic. The invisibility of young people’s voices suggests that any inclusion that does occur does so within distinct and contested spaces. This project, titled Creating Space—Young People’s Voice in Healthcare, invited young people to explore and share their perspectives on what is important to them regarding their health and well-being. It aimed to answer the question, “How can participatory video and drama facilitate collaboration with young people to empower their voices in healthcare policy and provision?” The project identified barriers to and protective factors for young people’s health and presents them in short video artefacts. These videos can inform policymakers, health professionals, and anyone involved in young people’s lives of some of the challenges that young people face in achieving and maintaining good health. Methods: The project set out to determine if participatory video and drama can facilitate collaboration with young people to enable them to identify the health issues that most affect them and empower their voices in healthcare policy and provision. The participatory action research methodology and associated critical theory epistemology enabled the participatory video methods to create the literal and metaphorical space for young people to “have their say.” A five-day participatory video and drama workshop included 29 young people aged 11 to 17 years who worked alongside facilitators to develop a social and creative space to promote reflection, discussion, collaboration, and filmmaking skills. Using creative and analytical exercises, the participants produced stories captured in video about some of the health issues that young people face today. The participants wrote, storyboarded, performed, filmed, and co-edited these videos themselves. The videos present the project’s findings, contextualised by the researcher’s reflexive critical commentary. Results and analysis: The creative, narrative processes expressed in video are literal artefacts of the participants’ “voice” and form a summary of the perspectives, ideas, and potential solutions expressed during the iterative, exploratory process. These creative, narrative video artefacts, along with examples of the analytical processes (captured in video), are hosted on a dedicated YouTube channel as a repository to share participants’ ideas and perspectives with other young people and anyone involved in caring for young people. Using a reflexive critical commentary to add current and contextual knowledge, the findings indicate that the participants are most concerned with issues relating to their mental health and emotional well-being and believe they are commonly defined by visible but immutable characteristics such as age, race, and sex that can leave many feeling “invisible” and unable to “fit in.” The participants shared experiences of physical and online bullying, anxiety, depression, and health and sexual health education that doesn’t fit their needs. They suggest solutions that include calls for easy access to counselling services, “kindness” and courage from each other to confront all bullying, and changes in how health and sexual health education is taught at school. Discussion: Situated within a critical rights–based paradigm, the project aligns with an established human rights discourse. It answers the research question through collaborative and creative reflective processes that deliver young people’s perspectives using video. Providing a nuanced understanding of young people’s stories and perceptions on health, the video artefacts enable a wider dissemination of their ideas to other young people, families, and adults who provide care, education, and health governance. The project also demonstrates that youth-centric methods (such as participatory video and drama) can enable young people to participate as co-researchers in exploring the health problems that they see as most salient to them, gaining the benefits of participation (as promised under the UNCRC) and the opportunity to advocate for change in how schools, communities, and the government manage issues that impact on their health and well-being. Conclusion: The participants identified that mental health issues are the key barrier to young people living healthy lives. They suggest a need for government, health professionals, teachers, and young people themselves to address the prevalence of in-school and online bullying and the distinct lack of appropriate sexual health education. This project demonstrates that the use of artistic and collaborative participatory video and drama methods can provide positive and empowering experiences for young people and insights into their experiences and stories of health. It represents the first use of participatory video and drama with young people in the Aotearoa New Zealand health context and contributes to a wider repository of knowledge in participatory research with young people. The unique video artefacts present young people’s perspectives in perpetuity, in their own images and literal voices, enabling them to be seen, heard, and considered by adults and other young people alike. This is an important example of research with young people, for young people, that can be disseminated to audiences not traditionally served by academic platforms. The interactions between the facilitators and participants, and between the participants themselves, constitute an original contribution to child and youth health research. The embedded stories do not simply mirror the world or experiences within it but aspire to express and make attainable much deeper truths and understandings. They present a call for wider use of creative and youth-centric participatory methods to enable young people to contribute directly to solving the problems that affect them.

Participatory video; Drama; Child health; Youth health; Participatory research; Participatory action research; Youth voice
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