The lived experience of severe mental illness and long-term conditions: a qualitative exploration of service user, carer, and healthcare professional perspectives on self-managing co-existing mental and physical conditions

Abstract

Background People with severe mental illness (SMI), such as schizophrenia, have higher rates of physical long-term conditions (LTCs), poorer health outcomes, and shorter life expectancy compared with the general population. Previous research exploring SMI and diabetes highlights that people with SMI experience barriers to self-management, a key component of care in long-term conditions; however, this has not been investigated in the context of other LTCs. The aim of this study was to explore the lived experience of co-existing SMI and LTCs for service users, carers, and healthcare professionals. Methods A qualitative study with people with SMI and LTCs, their carers, and healthcare professionals, using semi-structured interviews, focused observations, and focus groups across the UK. Forty-one interviews and five focus groups were conducted between December 2018 and April 2019. Transcripts were coded by two authors and analysed thematically. Results Three themes were identified, 1) the precarious nature of living with SMI, 2) the circularity of life with SMI and LTCs, and 3) the constellation of support for self-management. People with co-existing SMI and LTCs often experience substantial difficulties with self-management of their health due to the competing demands of their psychiatric symptoms and treatment, social circumstances, and access to support. Multiple long-term conditions add to the burden of self-management. Social support, alongside person-centred professional care, is a key facilitator for managing health. An integrated approach to both mental and physical healthcare was suggested to meet service user and carer needs. Conclusion The demands of living with SMI present a substantial barrier to self-management for multiple co-existing LTCs. It is important that people with SMI can access person-centred, tailored support for their LTCs that takes into consideration individual circumstances and priorities.

A core outcome set for trials evaluating self‐management interventions in people with severe mental illness and coexisting type 2 diabetes

“…People with SMI and co-existing physical long-term conditions experience unique issues and barriers to accessing healthcare services, and also have different priorities to those without SMI, due to the difficulties of managing co-existing symptoms and treatment burdens, therefore it is important to develop a specific COS for people who have co-existing SMI and type 2 diabetes, that accounts for these unique experiences and priorities. 14,15 Results: Seven outcomes were selected: glucose control, blood pressure, body composition (body weight, BMI, body fat), health-related quality of life, diabetes self-management, diabetes-related distress and medication adherence.…”

“…However, there is no COS for diabetes self‐management interventions targeting people who have co‐existing SMI and type 2 diabetes. People with SMI and co‐existing physical long‐term conditions experience unique issues and barriers to accessing healthcare services, and also have different priorities to those without SMI, due to the difficulties of managing co‐existing symptoms and treatment burdens, therefore it is important to develop a specific COS for people who have co‐existing SMI and type 2 diabetes, that accounts for these unique experiences and priorities 14,15 …”

Shaping research for people living with co‐existing mental and physical health conditions: A research priority setting initiative from the United Kingdom

“…11 In particular, an increased likelihood of health risk behaviours such as smoking, poor diet and physical inactivity [12][13][14][15] ; difficulties in taking up and accessing preventative services such as screening services 16 and routine dental care 17 ; difficulties associated with the practical, emotional and physical complexity of managing multiple health conditions. 18,19 In addition, some antipsychotic and antidepressant medications have metabolic side effects such as weight gain. 20 Furthermore, people with severe mental ill health are more likely to be disadvantaged socioeconomically 21 and such inequality is known to accelerate multimorbidity.…”

“…Living with mental ill health can have a significant adverse impact on people's ability to maintain a healthy lifestyle 11 . In particular, an increased likelihood of health risk behaviours such as smoking, poor diet and physical inactivity 12–15 ; difficulties in taking up and accessing preventative services such as screening services 16 and routine dental care 17 ; difficulties associated with the practical, emotional and physical complexity of managing multiple health conditions 18,19 . In addition, some antipsychotic and antidepressant medications have metabolic side effects such as weight gain 20 .…”

What is known about the determinants of developing antipsychotic-induced metabolic syndrome and interventions to address them for community dwelling adults: a scoping review protocol

“…Studies testing non-pharmacological interventions have been limited by short follow-up periods thus the sustainability of any improvements in clinical outcomes is uncertain. Process evaluations report patient barriers to engaging with intervention components, including difficulty in using self-monitoring tools, burden of regularly recording progress, barriers to accessing ongoing support, and resistance to undergo physical health checks and monitoring (2,(19)(20)(21)(22). As antipsychotics induce changes in behaviour, such as increased calorie intake and sedentary behaviour, modifiable determinants, such as dietary choices and physical activity levels, can attenuate and even prevent the physiological manifestations of MSEs (19,(23)(24)(25).…”