Self-determination: what do people who experience severe mental illness want from public mental health services?

Abstract

Introduction : If people who experience severe and enduring mental illness are to experience recovery, the health care context in which they engage needs to foster human rights, self-determination and social inclusion. This qualitative research aims to advance understanding about processes that influence self-determination by engaging and involving people who experience mental illness in meaningful conversations about how health care systems impact recovery. Theory / Methods : People over age 18 who experience severe mental illness and who were living in South East Queensland were recruited through community-based mental illness support organisations. 42 people participated in five semi-structured group interviews. Digitally recorded interviews were transcribed verbatim. In conjunction with the theoretical lens of self-determination theory, principles of thematic analysis were used to code and categorise data. Emergent themes were constantly compared until the most parsimonious themes that accounted for all data were identified. Approval to conduct the study was obtained from relevant Human Research Ethics Committees. Results : People indicated that being engaged in their care was central to the experience that they desired from a safe health care system, yet actual experiences differed. People also emphasised the need for accurate, empathic communication; the importance of building and maintaining trust-based relationships; integration and continuity of care between providers and sectors within the health care system; and gaining access to care when and as needed. Discussion : People who experience severe mental illness understood that achieving autonomy in high-risk mental illness situations was tricky; that in some circumstances there were valid reasons for autonomy and self-determination to be thwarted. However, unreflective use of blanket restrictive practices without providing reasonable alternative activities disabled them. People wanted to be engaged in their care; with health professionals in autonomy supportive ways; and with health and social support networks that assisted in recovery. Conclusion : Overall, people who experience severe mental illness want individual health professionals and the collective health care system to engage them in their care. However, they often found that restricted access to adequate, timely and well-integrated support left them feeling disempowered. Lessons learned : Responsive health professionals in integrated health care systems that engage people in a person-centred manner are fundamental for recovery and to the fulfilment of their basic psychological needs: autonomy, connectedness and competence. Limitations : A small number of participants for a single geographic area limit the generalizability of this study. Additionally, participants may have engaged in the research because they had a high level of interest in sharing their experiences, and the opinions of other people who were less invested in their care is unknown. In a group interview situation, they may not have felt comfortable to express to express their full range of experience. Future research : Self-determination theory is primarily a theory of motivation. Further study needs to be undertaken to understand the motivational influences that impact how health professionals engage people who experience severe mental illness.