The findings of this study identifies that additional care work demands were a significant and important feature of informal carers’ lives in the context of SMI, although this varied with the stage of the patient's diagnosis, starting medication, and the presence of co-morbidity in patients. Informal carers’ own morbidity status, alongside their social and material circumstances, had a significant bearing on their ability and capacity to take on greater amounts and types of often complex care work. Informal carers expressed a particular need for help with everyday practical tasks and the personal effects of their care burden.
Findings here also provide evidence that there is reciprocity and co-dependency between ‘patients’ and ‘informal carers’ in caring relationships. Furthermore that there may be greater patient dependency during periods, for example, after starting medication. The concept of reciprocity between informal carers and patients with SMI is explored in our previously published paper (54).
Literature on the impact of significant health conditions reports that these can disturb established divisions of labour within and beyond households (39, 40). Alteration and variability in the quantity and quality of care work in relation to severity of illness or degree of impairment found in this research is also reflected in the broader literature. Informal carers’ own morbidity along with their social circumstances had an impact on their capacity to take on greater amounts of care work.
Half of respondents in this study were partners of individuals with SMI. This may be important in interpretation of the findings. For example, it is known that partner carers frequently experience difficulties and confusion in discerning between romantic roles and caregiving roles. This may have implications in their experiences of physical health conditions in the person they provide care for (55). Studies which recruit a larger number of participants are needed to explore this phenomenon in more detail.
The management of feelings and emotions is a critical aspect of what informal carers do in the context of SMI, comorbid physical health and psychotropic medication and their side effects.This constitutes ‘emotion work’ (56); the emotional effort made by an individual to manage their own feelings and those of others. Doing emotion work in the context of SMI, comorbid physical health and psychotropic medication appears to be fundamentally about the management of feelings in order to facilitate a sense of control over events, that are frequently outside their control.
Informal carers were faced with supporting the emotional needs of their family member (the patient), whilst also finding ways to cope with their own emotions. Unsurprisingly, these aspects of ‘caring about’ themselves and others were inextricably linked. There was a feeling amongst some carers in this study of an obligation to be ‘strong’ and ‘positive’ and to maintain a sense of ‘things in life continuing on as normal’. This need to be strong, to cope, and to maintain a sense of normality for the family created a significant burden on the carer; a similar pattern as found among informal carers for people with Alzheimer’s disease and older people in general(57, 58). In part, this emotion work distinguished between the two different but connected aspects of caring work: caring for and caring about. Emotion work was an aspect of both types of caring work but was the dominant feature of the work of caring about.
As part of the caring process informal carers can be seenas sharing the illness and the difficulties this entails becomes a joint experience. Grounded in their knowledge of the patient’s disposition, informal carers sometimes glossed over or withheld information, for example, about their own emotional and practical needs or the impact of changes in amount of practical work they were doing, in order to minimise distress for the patient and themselves.
Our findings relating to emotion work undertaken by informal carers reveals that they may often prioritise the interests and needs of patients before their own. Thiscan result in burnout and additional morbidity as those who provide the care end up needing interventions and care themselves. This at the very least creates a tension or at worst a double bind; being an informal carer creates health needs for the carer themselves. Caring has a cost, both emotional and physical.
These research findings have implications for those working with people living with SMI and their families, including those involved with treatment decisions. They suggest that providing support to informal carers is as important as that for the patient themselves. Conceptualising the informal carer as an active agent co-constructing the illness experience of the patient can provide insights into the roles played by and the needs of informal carers. Healthcare professionals could work more actively with carers to further embed their experiences in care decisions, given that the consequences of these decisions often fall to them (59).
Informal carers may be less likely to accept support services directed at them. They may feel that a consequence of doing would result in attention and resources being redirected away from the patient they are providing care for. This is corroborated by findings of other research(60, 61). Health care providers may have to reassure informal carers that they have legitimate and justifiable needs and that their contribution to care for the patient is substantiable and critical: in short that their needs count.
The findings here are concordant with those of previous qualitative research which report that informal carers have essential roles in undertaking practical care work tasks to support physical health of people with SMI(41). However, we report here management of emotions and caring for which was absent from those studies. Previous studies have highlighted that informal carers are not fully involved in patients’ physical health care and their contributions to optimize physical healthcare outcomes do not appear to be completely recognised(41, 62). Our study adds that in doing so it is important to consider how informal carers may minimise the impact of providing care on themselves.
Strengths
The background and discipline of the lead researcher and co-authors are relevant. The lead author is an experienced pharmacist with 24 years of clinical practice split almost equally between general medicine and psychiatry. The doctoral student is still practicing as a Senior Mental Health Pharmacist in a Mental Health Trust. The supervisory team is multidisciplinary (pharmacy, health psychology, sociology, and public policy) and have extensive experience of conducting applied research within mental health settings. The use of a common interview schedule and thematic analysis resulted in a holistic understanding of informal carer experience. Patterned meanings and common perspectives were identified from respondents.
Limitations
This research was conducted with a small number of informal carers from the United Kingdom (UK). The extent to the findings can be considered generalisable of broader informal carer views is a matter of conjecture. There is also an implicit limitation in how the study was promoted and recruitment was conducted, people who respond may generally have strong opinions about the issue in question. Individuals’ views were influenced by experiences of specific health services in the UK. All informal carers in this study were from white ethnicity. Further research with a larger sample of carers from a range of ethnicities and geographical settings should be prioritised.
The research presented here, however, can offer an initial understanding of some of the issues experienced by informal carers and serve to undertaking further focused and hypothesis-driven investigation.
Further research
Further research using quantitative and mixed methods using larger representative samples should be conducted. Quantitative studies could be used to ascertain, for example, what are viewed as the major challenges to physical health and what resources would make it easier to live with the consequences of providing care for physical health for someone with SMI. They could also include quantitative measures of quality of life and well-being as well as burden of care for informal carers.
According to the Centre for Reviews and Dissemination (63): “The relevance of qualitative research to the assessment of health interventions, especially those that are complex, has been recognised. As a result, qualitative and quantitative methods are increasingly being used together in primary evaluative research. The main reason for the adoption of mixed methods in primary research is to enhance relevance in the decision-making process.” Such studies could use the findings of qualitative research already conducted to inform their study protocols.
The findings of this study are limited to the experience of cardiometabolic risk, metabolic syndrome and related diseases e.g., diabetes in SMI (64). Future studies should focus on other long term health conditions e.g., cancer, airways disease that are known to be prevalent in SMI. In addition, research that focuses on preventive healthcare is needed.
The implications that patient physical health problems present for carer well-being and the quality of the caregiving relationship in psychosis deserve further investigation.