“They forget to actually listen”: the ‘dis-integrated’ physical health care experience of people with severe mental illness

Abstract

Introduction: It is well established that people living with severe mental illness experience shortened average life expectancy resulting in up to 25-30 years of life lost. Despite evidence that indicates there are multiple contributing factors, clinicians commonly believe that the mortality gap is almost solely caused by side effects of psychotropic medication. Furthermore, there is a dearth of research regarding the physical health experience from the perspective of people who are living with severe mental illness. Understanding this experience will be essential if clinicians are to better integrate physical and mental health care for this population. Theory / Method: Semi-structured interviews were conducted with 32 people living with severe mental illness, and who were accessing care and support from public mental health services and / or non-government organizations. Data were thematically analyzed. Results: Overall, participants reported poor physical health that required considerable planning and effort to manage effectively. The mean age of participants was 44.5 years and over half (56%) reported major physical illness. Three overarching themes were identified: “the work of self care”, “the importance of being heard”, and “the importance of social support”. Discussion: Participants struggled to find the motivation for positive health behaviors and illness self-management; however, most were determined to take control of their physical and mental health concerns and become as independent as possible. Despite frequent problems of selfexpression and feelings of anxiety in health care settings, the quality and nature of relationships with health care practitioners was important to participants who valued being listened to and feeling that their concerns were validated. Likewise participants emphasized the role of their social network in terms of managing their mental and physical health. Conclusions: If healthcare practitioners are to improve the integration of physical and mental health care in the population with SMI, it is essential that respectful relationships form the basis of care provision. Second, in line with participants’ expressed desire for independence, promoting and supporting illness self-management is important. Third, individual tailored support particularly aimed at integrating and strengthening informal support networks is indicated. World Congress on Integrated Care 2014, Sydney, November 23-26, 2014. International Journal of Integrated Care – Volume 14, 8 December – URN:NBN:NL:UI:10-1-116603– http://www.ijic.org/ Lessons learned: Although the need for integrated care provision based on respectful relationships seems self-evident, the narratives of participants indicated that they struggled to find clinicians who would listen to them and who respond in ways that protected and promoted physical health. Additionally, although participants recognized the need to interact with a complex health care system, the biographical and social contexts in which they managed their health was not well integrated into care delivery processes. Limitations: Participants in this research needed to be sufficiently well to be able to provide informed consent. Therefore, research findings might not be transferable to those people with severe mental illness who are at different stages of their recovery journey. Future research: Further research is required to ascertain ways in which biographical and social contexts can be better integrated into physical and mental healthcare provision in Australia.