Barriers to participation in mental health research: Findings from the Genetics and Psychosis (GAP) Study

Abstract

The aim of this study was to investigate why people with a first episode of psychosis choose or decline to participate in mental health research, using a qualitative study design. Participants were recruited via referrals from the Genetics and Psychosis (GAP) study. A total of 26 individuals with a first-episode of psychosis (nine of whom declined participation in the GAP study and 17 who participated) were individually interviewed and asked about their attitudes towards mental health research participation. Thematic analysis of interview transcripts was used to determine dominant themes and sub-themes on what constituted barriers and facilitators to participation. Reasons for research participation identified included a desire to help others, curiosity, and positive experiences with clinicians. Decisions to participate or not were also influenced by practical issues, including the timing of the approach, researchers' communication skills and whether individuals had concerns that it may be potentially harmful to their health. Other barriers to participation included patients' conceptualizations of mental health problems and the influence of other inpatients. Information on barriers and facilitators to recruitment in mental health research could inform recruitment strategies, thereby maximizing recruitment rates and minimizing the risk of selection biases.

Overcoming recruitment barriers revealed high readiness to participate and low dropout rate among people with schizophrenia in a randomized controlled trial testing the effect of a Guided Self-Determination intervention

“…Those reasons are in agreement with those found in the literature [16,17,34]. We did not ask the participants directly for their motivation to participate, but those who expressed it spontaneously often stressed “helping other people or helping myself” as an important factor to participate in the trial, which were in accordance with the findings from Chong et al [15] and Roberts et al [18].…”

“…Challenges and barriers regarding participation in research have been connected with timing of approach, practical barriers, conceptualization of mental health problems, concerns of potential harm, and negative influence of other patients [16,17]. Regarding reasons for participating in research Chong et al [15] found two main reasons for volunteering; 1) the possibility that I might get well, 2) I’m helping other patients like myself, and a similar study Roberts et al [18] found three main reasons; 1) helping other people, 2) helping science, 3) gaining a sense of hope.…”

What proportion of patients with psychosis is willing to take part in research? A mental health electronic case register analysis

“…Other studies have considered patient attitude towards engaging in research reporting facilitators and barriers such as altruism, reassurance about confidentiality, access to study centre, ethnic minority status, stigma and distrust in mental healthcare services. [11][12][13] Despite these advances, it is unclear whether research participation among people with mental disorders contributes to better clinical outcomes (as seen in physical healthcare) or if staff are more likely to approach patients about research if they have a relatively good prognosis.…”

A Pesquisa Acadêmica Como Atividade Humana: Participação De Usuários Da Saúde Mental E as Contribuições Da Terapia Ocupacional

“…Na literatura internacional, há um crescente reconhecimento da importância, do direito e do valor do envolvimento de usuários da saúde mental em pesquisa (ROSE, 2003;GRIFFITHS;JORM;CHRISTENSEN, 2004;HAPPELL;ROPER, 2007;HOPKINS, 2008;NING;WEAVELL;WOODHOUSE, 2010;WOODALL;HOWAR;MORGAN, 2011;HANCOCK et al, 2012). Embora seja reconhecida a importância da inclusão ativa dos mesmos em pesquisa, valorizando o conhecimento advindo da experiência vivida, ainda são raras as iniciativas que os incorporam na equipe de pesquisa, como pesquisadores e/ou colaboradores.…”