1. Section Editor(s): Shattell, Mona M. PhD, RN, FAAN

Article Content


The United Kingdom leads the way in service user-led research,1 in large part because many funding agencies require it.2 Theory, research, and the so-called "evidence-based practice" in the United States lag far behind those by our colleagues in the United Kingdom. In the United States, the traditional funding structures of the National Institutes of Health and the like are generally not inclusive of patients or health service users as leaders and collaborators. Although there have been some requests for proposals for community-based participatory research projects, they are few and far between and they do not always require true leadership of patients or service users.


Although funding for community-based participatory studies is limited, some US-based researchers3,4 approach knowledge development using these methods, which have been especially useful for phenomena of concerns of traditionally underrepresented or vulnerable populations. My own community-based participatory research on the mental health of vulnerable populations, more specifically, my recent research through a research group named "Voices and Visions," has informed these ideas for the future of nursing knowledge. The purpose of this article is to propose a new approach to nursing knowledge development, using my experiences on a user-led "Voices and Visions" research team.


Before working with this interdisciplinary and international research team, I conducted research in the community.5 I conducted community-based participatory research with persons who served as representatives of the community,6 and I conducted community-based participatory research studies that had community advisory boards.7 These studies formed the methodological scaffolding that has led me to the service user-led Voices and Visions research team. Service user-led research is more than simply conducting research in the community and is more than community-based participatory research. It involves more than having 1 person with relatively little power consult with a research team. It is more than having a community advisory board whom the researchers share their ideas, seeking approval or disapproval.


A service user-led team, for example, the Voices and Visions research team, is true community-based participatory research-it is a team that is led by consumers with lived experiences of the phenomenon of concern; in this case, persons with psychosis who are consumers/users/survivors of mental health services. Persons with lived experience of psychosis have central roles-as leaders and coleaders-as researchers and theorists. The researchers, coresearchers/community members, and students all share an interest in unusual experiences, which include voice hearing and other psychotic-like experiences. The Voices and Visions research team is led by a mental health service user/consumer/survivor with lived experience of psychosis (voice hearing with schizophrenia) and a PhD student in community psychology, coled by me (an academic researcher, educator, and psychiatric mental health nurse), and includes 2 undergraduate students in community psychology (one with lived experience of psychosis and the other with lived experience of a learning disability). Our team also consists of several members of the hearing voices community-persons who are users/consumers/survivors of mental health services, who are also mental health activists, and who serve as research collaborators and participants in all aspects of the research process. The team is currently conducting several studies and projects: (1) a phenomenological study of psychosis; (2) a qualitative investigation of first-episode psychosis in young adults; (3) an exploration of service user's positions on psychiatric diagnosis, etiology, and treatment (N. Jones, T. Kelly, M. Shattell, unpublished data, 2013); and (4) an autoethnographic project on the dynamics of service user involvement within a research team (N. Jones, M. Shattell, C. Sonido, unpublished data). The work of the team is critical,8,9 participatory (N. Jones, T. Kelly, M. Shattell, unpublished data), ecological,10 and user-led (N. Jones, M. Shattell, C. Sonido, unpublished data).


I think that this may be the future of scholarship and knowledge development in nursing-theory and research that are critical, participatory, ecological, and patient or health service user-led or coled. Emerging theories for practice should be critical of traditional hierarchical power structures; should include persons with the lived experience of the phenomenon of concern, as theorists and researchers; should exhibit understandings that persons are part of wider sociocultural, political, organizational, and historical contexts; and conceivably should be codeveloped and cocontrolled by patients or health service users. Although there are many challenges to this, I believe that this would exponentially enhance the value of nursing knowledge.


Mona M. Shattell, PhD, RN, FAAN


Associate Dean for Research and Faculty Development


College of Science and Health


School of Nursing


DePaul University


Chicago, Illinois




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