As a result of community-based care for individuals with mental illness and scarce resources, it is family members who do much of the caring, including assisting with daily living skills and the provision of emotional support (Kenny, King, & Hall, 2014). Throughout the current article, the term “carers” is used, as this is the more common term for caregivers in the Australian context where this work was undertaken. In the current article, carer refers to a family member (usually a parent, sibling, or child) or friend who provides support and care to the individual with mental illness. Family carers for individuals with mental illness have been neglected by empirical research, which has traditionally focused on the experiences of carers for older adults, especially those with dementia.
In Australia, it is estimated that 2.7 million informal carers (12% of the population) provide unpaid care to family members or friends with a disability, mental illness, or chronic conditions (Australian Bureau of Statistics, 2013). It should be acknowledged, however, that clear and specific figures of the number of carers of individuals with mental illness do not exist in this country. One reason for the difficulty quantifying the number of mental health carers in Australia is that carers of individuals with mental illness may not identify themselves due to the stigma associated with mental illness. Furthermore, the periodic nature of episodes of mental illness may mean that carers are not recognized.
The Australian situation regarding the proportion of carers is comparable to the situation in other parts of the world (Colombo, Llena-Nozal, Mercer, & Tjadens, 2011; Kenny et al., 2014). According to the United Kingdom–based Survey of Carers in Households 2009/2010, 12% of individuals 16 or older in England were a carer (NHS Information Centre Social Care Team, 2010). Colombo et al. (2011) reported that the percentage of informal carers in Organisation for Economic Co-operation and Development countries ranges from 8% (Sweden) to 16% (Italy) of the population. Countries such as Poland (10.3%), France (10.7%), Switzerland (10.8%), Germany (11%), The Netherlands (11.4%), Czech Republic (12%), and Belgium (12.1%) are each within 1% of Australia's 11.2% of the population reporting to be informal carers (Colombo et al., 2011).
As the severity of an individual's mental illness increases, so too does the likelihood of impairment in the individual's home and social life, as well as his/her ability to work and earn an income (Zegwaard, Aartsen, Grypdonck, & Cuijpers, 2013). In the context of community-based care, many individuals with severe mental illness (SMI) require the support of an informal carer, such as a family member or close friend, to assist with everyday living. SMIs, such as schizophrenia, bipolar disorder, depression, and anxiety disorders, often result in carers providing long-term care for their loved ones, as the progressive course of such illnesses is frequently accompanied by a high prevalence of acute and chronic cognitive and somatic symptoms (Zegwaard et al., 2013). The provision of this care is voluntary and based on social and family relationships.
The difficulties and altered life circumstances experienced by individuals with SMI results in carers taking on significant responsibilities to support their family member or friend. The acts of caregiving are challenging for family members in several aspects. First, there is the significance of the behavioral changes experienced by the individual with SMI, such as hallucinations, delusions, mood swings, and lethargy, and the impact this may have on the carer (Weimand, Sällström, Hall-Lord, & Hedelin, 2013). Second, there are changes that carers must manage in relation to all aspects of their own lives, such as significant physical, psychological, social, and financial burdens associated with their carer responsibilities (Burgess, Pirkis, Coombs, & Rosen, 2011). Coping with the stress created by these challenges has been found to lead to carer anxiety, frustration, anger, grief, and shame (Grandón, Jenaro, & Lemos, 2008). However, exploration of the specific caregiving tasks that those who provide care to individuals with SMI undertake and how these may affect their adjustment to caregiving has been neglected.
There are also positive aspects as to how carers perceive their caregiving roles. Personal gain has been described as a positive consequence of caregiving, characterized by recognition of one's inner strength, learning new things, building confidence, and personal growth (Kenny et al., 2014). Nonetheless, the positive aspects to providing care for individuals with SMI have received inadequate research attention.
Carer Burden and Respite
The concept of carer burden was first defined by Platt (1985) as the presence of problems, difficulties, or negative events that influence the life of a family member when taking care of his/her loved one. The World Health Organization (2003) recognizes that the burden of care associated with mental illness, including economic and social costs, normally falls on families and carers. The role of respite care is to reduce the burden or carer fatigue experienced by carers of those with chronic and engendering conditions, such as SMI. Respite care provides the carer with personal relief from their everyday caregiving responsibilities by taking temporary charge of the care recipient (Lund et al., 2014). Respite care can be formal or informal and can occur in both carers' homes and residential centers. It most often involves supervision and activities for the care recipient or help with household duties. Access to support, such as that from respite care services, may reduce distress and other negative feelings experienced by carers of those with SMI.
However, many carers report limited access to appropriate relief from their carer responsibilities, such as that found through using respite services. Jeon, Brodaty, O'Neill, and Chesterson (2006) examined the perceptions of respite care of 21 Australian family carers of individuals with mental illness using semistructured interviews and found that, although all carers identified respite care as a physical and mental break or holiday, less than one half (43%) had accessed respite care and many were unaware that the service they had accessed was for respite purposes. Carers overwhelmingly described their experiences of respite care as positive, but highlighted difficulties with care recipient reluctance, poor quality services, and insufficient time in respite. Research exploring the impact of respite care for individuals who provide care for those with mental illness is limited.
The current study addresses this gap in the existing literature on what it means for carers of individuals with SMI to be relieved of their carer responsibilities for a period of time. The break from carer responsibilities occurred for participants while their loved ones attended the 2015 Recovery Camp—a 5-day therapeutic recreation experience. Potential participants were those identified as the carer of an individual with a mental illness and whose care recipient was attending Recovery Camp.
Recovery Camp is an innovative, experiential program that focuses on individuals' strengths and not their illness. Recovery Camp brings individuals with mental illness together with future health professionals (i.e., undergraduate health care students) from a variety of health professions, including nursing, psychology, exercise science, and dietetics (Moxham, Liersch-Sumskis, Taylor, Patterson, & Brighton, 2015). Carers can feel assured that their loved one is in safe hands and fully looked after. The Recovery Camp program was established in 2013 and runs annually at an established recreation facility west of Sydney, Australia. There is no cost to attend Recovery Camp, which is also an important consideration for carers.
Ethical approval was received from the relevant university Human Research Ethics Committee and all participants provided written, informed consent. Potential participants (i.e., carers of those attending Recovery Camp who had accompanied the individual to the information session) were identified initially at information sessions before Recovery Camp and asked to provide their contact details if interested in being part of the study.
Of 28 individuals with a mental illness who attended Recovery Camp, nine carers consented to being included in the study. A questionnaire was administered to the carers with a 100% response rate, collecting demographic and qualitative data. Information elicited included: length of time in the caregiving role, age of carer and care recipient, care recipient's relationship to carer, days and hours spent in the caregiving role per week, and how many hours of leisure time is left after accounting for care-giving commitments. In addition to these closed questions, open-ended questions sought information related to the impact of the caregiving role on the carer, including the types of activities they forgo as a result of caregiving commitments. Further, two questions specifically related to carers' experience of the respite received from their care recipient being away for 5 days at Recovery Camp. These open-ended questions elicited responses regarding the ways in which the 5 days of respite had been beneficial and what activities the carer had been able to engage in as a result. One final question asked the carer to identify any changes they witnessed in their care recipient as a result of attending Recovery Camp, but this is not the focus of the current article.
Data from the open-ended questions were independently analyzed by two members of the research team (R.M.B., C.P.). Analysis was conducted using the constant-comparative method (Strauss & Corbin, 1990). All data were transcribed and analyzed by the two researchers using the open-coding method whereby each one assigned codes that highlighted the key points within the data. After initial coding sheets were completed, both researchers compared and merged their initial codes into more robust categories. Comparison and analysis continued until themes emerged and a level of saturation was identified. Not unexpectedly, the three emergent themes related directly to the open-ended questions: (a) impact on health and well-being, (b) impact on leisure activities, and (c) the benefits of respite.
An additional strategy included drawing on all supporting data to create individual narrative accounts of participants' stories, which included rereading the original and coded transcripts, along with the deeper level themes developed during the previously described level of analysis, to portray a narrative representative of each participant's lived experience of respite while their loved one attended Recovery Camp (Moustakas, 1994).
Results and Discussion
The mean age of carers was 62 years (range = 48 to 81 years), and the mean age of care recipients was 41 years (range = 31 to 78 years). On average, carers had been providing care for 23 years (range = 5 to 46 years), 5.9 days per week, and 16 hours per day (mean = 94 hours per week).
This section details the emergent themes, which are presented with direct narrative excerpts from participants' written responses. Some details of participants' stories (e.g., name, gender, age) have been adapted to protect their identities. However, the quotes provided are exact words from their responses.
Impact on Health and Well-Being
All nine participants reported negative health effects that they directly associated with their caring responsibilities. Associations between physical and psychological ill-health and the burden of being a carer are well-established (Perlick et al., 2007). Maintaining carers' health and well-being is important, as the involvement of carers is pivotal in terms of optimal treatment and social support options for care recipients with SMI (Perlick et al., 2007).
Stress. A plethora of research has shown stress to have a negative effect on health, leading to cardiovascular problems, metabolic and hormonal dysfunction, some cancers, major depression, chronic anxiety, and other emotional disturbances and psychological problems (Galla, O'Reilly, Kitil, Smalley, & Black, 2015). Compared to non-carers, carers experience higher levels of stress, which can lead to a poorer quality of life (Chang et al., 2016). An Australian study by Mackay and Pakenham (2012), which explored a model for stress and coping with 114 carers of adults with SMI, found that daily care-giving was associated with higher stress levels and poorer overall health. The experience of stress was mentioned by all participants in the current study. One carer noted, “My daughter is with me 24/7. It's very stressful.” Another carer explained, “My health is not the best. I think it's the stress of it all, not having any time to myself.” A third carer added, “Both of us are stressed and worried, agitated, short-tempered, giving us a lot of worry all the time.”
Depression and Anxiety. Carers of individuals with mental illness have been found to report higher rates of depression and anxiety than non-carers (Mackay & Pakenham, 2012). Carers of individuals with SMI often have to manage chronic, challenging, and sometimes unpredictable psychological symptoms displayed by the care recipient, receiving little or no training for the role (Chang et al., 2016). The caring role has an impact on the mental health of the carer, often manifesting as depression and anxiety, as found by participants. One carer stated, “[The care recipient] gives [me] a lot of anxiety and worry. His condition means we are constantly living on edge.” Another carer said, “I feel depressed myself. Day-to-day living is depressing. I have to take antidepressants myself.”
One participant gave a detailed account of the impact of caring on mental health: “I'm depressed sometimes that my life is just caring for my middle-aged daughters. I'm getting old and it's taking its toll on me, physically and emotionally. I feel so down all the time.”
Physical Health Problems. Carers of individuals with mental illness are also at greater risk for physical health problems than non-carers (Perlick et al., 2007). However, physical health consequences of caregiving have received less research attention than mental health impacts. Physical health problems were identified by carers in the current study as having been impacted negatively. One carer, who provides care to an adult child who resides at home, stated, “[Caring] has meant that my own health has steadily declined and contributed to my spinal disease to the point where I am now on permanent disability.”
Another carer, who provides home-based care to an older adult child who experiences a psychotic disorder, described being tired all the time. Indeed, tiredness and exhaustion was discussed by all nine participants. For example, one carer explained, “I feel so drained, tired, all the time. This takes a toll on my health; I don't have the energy to do anything, even when I do get a break.” Another carer added, “Yes, my health is not the best. [I] get very tired, headaches all the time.” A third carer noted, “To some extent, [caring] impacts on my health, but it's my way of life. I get tired easily; I'm exhausted.”
Impact on Leisure Activities
Research demonstrates that caring for an individual with SMI also affects carers' time for leisure activities (Magliano et al., 2005). Voss (1967) first defined leisure as being “a period of time referred to as discretionary time... when an individual feels no sense of economic, legal, moral, or social compulsion or obligation” (p. 101). Leisure activities are important, as they have been associated with positive cognitive function (Ferreira, Owen, Mohan, Corbett, & Ballard, 2015) and an overall improved quality of life (Lakey & Orehek, 2011). For carers in particular, caregiving responsibilities often prove too great a burden to continue with recreational interests and subsequently they reduce or relinquish their leisure pursuits (Bedini, Gladwell, Dudley, & Clancy, 2011). The negative impact on carer leisure time was identified by participants in the current study, with one carer explaining, “I have to forgo activities such as dancing. Can't really afford it now anyway.” Another carer noted, “I've never been in a situation where I had any free time.”
One carer of a middle-aged adult child who lives at home illustrated this lack of leisure time, noting, “We used to play tennis and other leisure activities. We have no time. Very seldom do we get away on holidays. We need more respite.”
Another carer of an adult child with bipolar disorder also found full-time caring responsibilities affected leisure time: “I don't have time to go out for dinner and lunch, watching football or cricket at grounds. Concerts, any social activities—all gone now.”
Benefits of Respite
The last theme is related to the benefits participants described when given 5 days of respite while their care recipient was away at Recovery Camp. Respite is a generic term for any formal or informal services that provide a break (Jeon, Chenoweth, & McIntosh, 2007), and is used to describe both the services provided to care recipients as well as the outcome for carers (van Exel, Morée, Koopmanschap, Goedheijt, & Brouwer, 2006). Quantitative studies have established positive effects of respite care on carer burden and quality of life (Magliano et al., 2005). According to qualitative research, respite care is the service most desired by carers, and levels of satisfaction are high among carers who use it (Lund et al., 2014). Accordingly, all participants in the current study reported benefits of respite that Recovery Camp provided them, with one carer noting, “Once again, the wife and I always work around [the care recipient's] needs. So we pursued golf and lawn bowls while [the care recipient] was away.” Another carer exclaimed, “Great to have a break! Got to go shopping, which I normally don't get to do.” A third carer explained, “I did manage to get to the shops and hairdressers on days that I normally spend with [care recipient]. I didn't have to forgo dance classes, which I often do.” Another carer added, “We went out for dinner, relaxed, put our feet up…didn't engage in other activities, just needed a rest, a break from looking after her.” A fifth carer explained:
I've just had surgery on my spine, so my time was fully spent in resting my back. I have only been allowed to venture out to keep doctors' appointments for quite a while. This time did mean, however, that I was able to spend the whole time as quality time with my husband. We don't get any other respite. We both got to have a break.
One carer of an older sibling with paranoid schizophrenia found the time that the sibling spent at Recovery Camp to be a positive experience:
Those 5 days away are amazing! I got to have a break. Even though [the care recipient] doesn't live with me, it's the five or six calls per day I used to get with him crying, or yelling, or telling me the world is terrible and everyone hates him, etc.; it's peace of mind knowing that phone isn't going to ring for a whole week! Yay! I can do my job properly without being constantly interrupted. I can have dinner with my family and do other things that I normally can't.
The experience of having a break when the care recipient attended Recovery Camp was positive for all participants. Correspondingly, research on the needs of carers demonstrates that most perceive respite to be potentially helpful in relieving the burden of care (Jeon et al., 2006). However, the literature on the benefits of respite has predominately focused on frail older adults, as well as those with dementia, intellectual disability, and children. Few published studies have explored the views of carers of individuals with mental illness (Watts & Hodgson, 2015) and the effectiveness of respite for them (Jardim & Pakenham, 2010).
For health care professionals, particularly mental health nurses, the understanding of the burden of care-giving for those with SMI is imperative, as nurses are often in the best position to assist and advocate for family members who are carers. Effective nurse-led approaches, such as carer education programs, can improve knowledge about specific mental health conditions and address areas such as coping, reduced burden, and improved carer health (Macleod, Elliott, & Brown, 2011). Further research is required to explore the specific respite needs of individuals who provide care to those with mental illness so as to reduce the burden experienced by these vulnerable populations.
The current study found that caring for a family member or friend with a SMI is often a challenging task that can have an immense impact on carers' physical and mental health, as well as negatively affect their time for leisure activities. The impact of caregiving on both the physical and mental health of carers is well documented. Carers of individuals with mental illness are often the main source of emotional and physical support for those experiencing mental illness, but receive little support themselves. As found in the current study, carers often forgo leisure activities because of their caring responsibilities. Not engaging in recreational activities can contribute to physical ill health and negative psychological well-being, as participation in leisure is linked to improved health, decreased depression, and reduced stress levels (Bedini et al., 2011). The results provide a starting point for further exploration into approaches, particularly nurse-led ones, that may lessen the burden of care provision for individuals with mental illness.
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