The impact of providing care for physical health in severe mental illness on informal carers: a qualitative study

Abstract

Background: People with severe mental illness (SMI) such as schizophrenia and bipolar disorder are at a substantially higher risk of premature death in that they die between 10 and 20 years earlier than the general population. Cardiovascular disease (CVD) and diabetes are the main potentially avoidable contributors to early death. Research that explores the experiences of people with SMI highlights their struggles in engaging with health professionals and accessing effective and timely interventions for physical health conditions. A consequence of such struggles to navigate and access physical healthcare results in many people with SMI relying heavily on support provided by informal carers (e.g., family members, close friends). Despite this, the experiences of informal carers, and the roles they undertake in relation to supporting the physical health and psychotropic medication use of people with SMI, remains under-researched. Aims: To explore the impacts of providing care for physical health in severe mental illness on informal carers. Method: Thematic analysis of semi-structured interviews with eight informal carers of people with SMI in United Kingdom (UK) national health services. Results: Informal carers played an active part in the management of the patient’s conditions and shared their illness experience. Involvement of informal carers was both emotional and practical and informal carers’ own lives were affected in ways that were sometimes deeply profound. Informal carers were involved in both ‘looking after’ the patient from the perspective of doing practical tasks such as collecting dispensed medication from a community pharmacy (caring for) and managing feelings and emotions (caring about). Conclusions: Providing care for the physical health of someone with SMI can be understood as having two dimensions - ‘caring for’ and ‘caring about’. The findings suggest a bidirectional relationship between these two dimensions, and both have a cost for the informal carer. With appropriate support informal carers could be more actively involved at all stages of care without increasing their burden. This should be with an awareness that carers may minimise the information they share about their own needs and impacts of their role to spare the person they care and themselves any distress.