Employment disadvantage and associated factors for informal carers of adults with mental illness: are they like other disability carers?

Family, friends or neighbours of people with long-term health conditions and disabilities often take on the role of an informal carer, providing assistance with a range of practical and support tasks. Cross-sectional and longitudinal studies demonstrate that carers are less likely to be employed than non-carers [1], with the main effect on employment status or labour force participation rather than hours worked [2]. For working carers, juggling the competing demands of both intensive caring and employment can be stressful and exhausting [3, 4]. Carers may reduce their working hours, take more leave, exit the labour force altogether, or make other adjustments to accommodate caring, such as choosing a more flexible or conveniently located job associated with a less challenging role or poorer remuneration [5, 6]. Carers’ participation in employment is also associated with other characteristics of the carer—such as middle age, being male, and in better health; the person they care for—such as a lower level of disability; and the caring role—such as lower intensity of caregiving [1, 6]. However, there has been comparatively little research exploring the relationship between caring for people with mental illness (e.g. psychotic, anxiety, depressive or personality disorders) and employment, despite evidence that the caring role in these circumstances is quite different [7].

Mental health caring differs from caring for people with other conditions, particularly physical disabilities. It has a greater focus on emotional support, managing crises and supervision of behaviour, and often involves unexpected fluctuations in support needs associated with the episodic nature of mental illness, as well as significant amounts of time spent ‘on call’ in case a crisis occurs [8, 9]. Mental health carers tend to report a higher caring burden and greater unmet support needs than carers of people with physical conditions [9, 10]. It has been argued that this emotional and crisis-related caring places additional stress on carers and interferes more with paid employment than other types of care [11], although comparative evidence is lacking. Beyond the practical challenges of juggling caring and work tasks, mental health carers report significant anxiety and poor health associated with their caring, which in turn impacts their work performance [11]. However, the workplace may also provide a form of respite for struggling mental health carers, similar to patterns described for emotionally strained dementia carers [12]. Further, mental illnesses have a younger age of onset than many other conditions, such as cardiovascular, musculoskeletal and neurological disorders [13]. Mental health caring therefore affects individuals at a broader range of ages and life stages, and may be long-term [10, 14]; this is important for its impact on carers’ employment [15].

Previous studies suggest varying employment rates across carers for different conditions, but findings have been mixed. One Australian study using the 2009 Survey of Disability, Ageing and Carers (SDAC) found that more than 60% of primary carers for some of the 25 conditions—like acquired brain injury, schizophrenia and osteoporosis—were not in the labour force, compared to less than 40% for others—such as attention deficit disorder and arm/hand/shoulder injuries [16]. An analysis of the 2012 US National Health and Wellness Survey found no difference in employment between schizophrenia carers, other carers (including for bipolar disorder and dementia) and non-carers, although working schizophrenia carers reported higher absenteeism, presenteeism and overall burden [17]. However, carer groups were matched on household income, which may have limited between-group differences in employment. A large-scale sample from the 2009–10 Personal Social Services Survey of Adult Carers in England found no difference in employment rates between carers for individuals whose conditions included or did not include a mental health problem, learning disability or dementia [18]. Drawing consistent conclusions from these diverse findings is challenging, and further complicated by differing labour market conditions, health care services and support arrangements for carers across countries [1, 19].

In Australia, there has been limited quantitative research to guide efforts to support mental health carers in the workforce. Our recent analysis of the 2012 SDAC found only 53.5% of mental health carers were employed, while for primary mental health carers (i.e. the person providing the most support), the figure was even lower at 40.8% [9]. An earlier survey of mental health carers receiving a caring pension (Carer Payment) or supplementary financial assistance (Carer Allowance) from the Australian government showed that only 29 and 53% respectively were employed [11]. Many of these carers reported making other work accommodations due to their caring, such as not applying for jobs (45%), reducing working hours (44%), or changing to a role with less responsibility and pay (25%) [11]. Other studies including smaller samples of Australian mental health carers recruited through health services also report that less than half are employed [20, 21]. In comparison, 62% of the Australian population were employed in late 2017 [22]. These studies illustrate the apparent low employment rates of Australian mental health carers but do not provide direct comparisons with other carers or the general population.

There is a good economic and social rationale for supporting carers to maintain their employment. For the carer, time out of the workforce leads to lost income, disruption to their career trajectory, and potentially other negative effects of unemployment such as reduced social networks and poorer health [23]. Conversely, employment has been linked to better mental health and quality of life for carers [24, 25]. From a government perspective, the costs of inaction include lost tax revenue from employed carers’ earnings, increased costs to provide income support to some carers (e.g. Carer Payment), and lost productivity and return on investment in education and training when skilled workers reduce their hours or leave the workforce [26‐28]. Where unemployment contributes to poorer health for carers, there may also be increased health and support service costs to government. Recognising these issues, Australia’s Fifth National Mental Health and Suicide Prevention Plan [29] includes an indicator for the proportion of mental health carers in employment.

To guide supports for mental health carers’ employment, specific information is needed about the factors most closely associated with employment, particularly those that may be amenable to policy intervention. Research conducted internationally on all disability carers has consistently identified that carers are less likely to be working if they are: female; nearing retirement age; less educated; in poorer health; or have a higher caring intensity, including greater caring hours, being the primary informal caregiver, caring for a close relative, living with the person they support, and caring for more than one person or someone who is more disabled [1, 6, 30]. Additional factors in some studies include the carer’s ethnicity or country of origin [31], marital status [30, 32, 33] and whether the person they care for receives disability support services [6, 18]. Use of paid services by the person with disability has been positively associated with employment for UK carers providing 10 or more hours of care weekly [18]. The relative importance of these contributing factors varies between male and female carers [2, 18, 34]. However, it is not known which variables are most important for mental health carers, who may be at different life stages and have access to a different range of health and support services compared to other carers. This study aimed to explore potential employment disadvantage experienced by mental health carers and the factors associated with their employment.

In Australia in 2015, working-age co-resident carers of adults with mental illness were significantly less likely to be employed and were employed for fewer hours and in lower-level occupations than adults without caring responsibilities. This is consistent with previous research demonstrating lower employment rates for informal carers compared to non-carers [1], and earlier research on Australian mental health carers suggesting low employment rates for this group [9, 11].

The main characteristics associated with employment for female mental health carers were age, education level, disability, and disability level of the person cared for. For male mental health carers, having a disability, disability level of the person cared for, and the latter’s receipt of formal assistance were associated with employment. These results are similar to previous research on carers internationally [1, 6, 30], although other factors from previous studies, such as being the primary carer and the number of people supported, were not the most important for this 2015 SDAC carer group. For men, significant factors were associated with the person cared for and caring role, whereas for female carers their own socio-demographic characteristics were more prominent. A greater proportion of female than male mental health carers were not in the labour force due to home duties and child care, retirement or being permanently unable to work. The stronger association between their own characteristics and employment for female carers likely reflects this greater diversity of other roles and their influence on workforce participation.

Male mental health carers were more likely to be employed if the person they supported received assistance from organised services, and this was true specifically of assistance with cognitive or emotional tasks, and services provided at least weekly. Further, both male and female mental health carers were less likely to be employed if the person they cared for had a higher level of disability. These results support and extend previous UK research on all carers, including longitudinal follow-up, which found that a range of services provided to people with disabilities were associated with their carers’ employment [6, 18]. Improving the availability and impact of psychosocial support services for people with mental illness may therefore assist their carers to maintain employment, but possibly more so for male than female carers.

Contrary to our expectation that the focus of mental health caring on emotional assistance and episodic support would interfere more with carers’ employment, there were no significant differences in employment rates between mental health carers and carers for people with other cognitive/behavioural conditions or physical conditions with or without secondary mental illness. The analysis did not show any factors related to employment that were unique to mental health carers. The employment picture was remarkably similar across carers for all disabilities, suggesting that the degree of impairment of the person cared for, available supports, and the carer’s own personal circumstances are more influential for employment status, perhaps through their impact on direct time commitments, than the nature of caring tasks or subjective burden of caring, which might be more relevant for subjective distress experienced in balancing employment and caring. Thus this study focused on a cross-sectional analysis of current employment status did not provide evidence that mental health carers need specially targeted programs to support them to work, separate from those for other carers. It is possible that while physical and mental health carers may provide different supports and experience caring differently, these roles and stressors have a similar impact on maintaining employment. It is also possible that caring role differences may affect other aspects of carers’ employment not measured in this study, which did not include carers’ subjective experience of their employment, caring or available supports. Previous research has found that stress associated with mental health caring contributes to poorer work performance [11], and that schizophrenia carers report higher absenteeism, presenteeism and burden compared to other carers [17]. Future research could explore potential differences in these other employment-related factors among carers for different conditions in Australia, or the mediating effects of different caring tasks or crisis-related care on subjective and objective experiences of employment.

The study results seem timely given the current roll-out of the National Disability Insurance Scheme (NDIS) in Australia, which is moving disability support services from grant-funded programs accessed via non-government organisations to individual packages of care based on needs assessments. The NDIS is required to take into account both what support is reasonable to expect families and carers to provide, as well as risks to the wellbeing of the person with disability and their carer from continuing pre-existing intensive caring arrangements [41]. However, widespread concern about the appropriateness of the Scheme for individuals with psychosocial disabilities and their carers has prompted a review of processes [42, 43]. Given the clear benefits to mental health carers and society from their participation in employment [23, 24, 27], it is critical that the implementation of the NDIS maintains or improves the level of support available for carers and people with psychosocial disabilities, to prevent carers from feeling they have no choice but to leave employment in order to support their loved ones. Further, consideration is needed of appropriate support arrangements for people with mental illness and their carers who are not eligible for the NDIS. Better access to community support services for people with mental illness will never completely substitute for informal caring, but would help to take the pressure off carers and allow them to better manage their multiple roles [1, 6, 44].

Co-resident mental health carers had significantly lower employment rates than non-carers in 2015 which, alongside earlier studies, suggests a continuing disadvantage associated with caring. Australian initiatives have attempted to support carers of children and people with disabilities in the workforce through encouraging employers to provide flexible work arrangements, and through funding limited support services for carers such as the Department of Social Services’ Carers and Work program [49, 50]. Carers generally report needing better access to services for the person they support to help manage their own employment and overall caring burden [3, 5, 6], and mental health carers in particular have reported inadequate service assistance and higher unmet needs than their other carer counterparts [9, 10]. The results of this study highlight the need to consider the carer’s employment journey in the context of their caring role, particularly the disability level of and supports received by the person cared for.