This paper is the first of two which will report on the findings of a qualitative study undertaken to investigate the problems associated with combining caregiving and paid work. This paper will focus on the relationship between factors internal to the familial or caregiving situation, such as the needs of the care recipient and the associated costs, household circumstances and the availability of family support, and a caregiver's ability to remain in paid employment. The implications of these internal relationships for government policy will be summarised.

1 Introduction

This paper and the next, presented by Cathy Thomson 'Caregiving and employment: conflicting or compatible responsibilities? support services, social security and caregiver employment', reports on the results of a recently completed study which was conducted at the Social Policy Research Centre (SPRC) from September 1995 to March this year. This first paper provides a background to the study, describes the methodology and briefly reports on some of the results. The second paper discusses some of the demographic issues in more detail and reports on the remainder of the study.

The terms 'caregiver' and 'carer' have been used broadly to describe a variety of situations in which one person provides assistance to another. For example, carers have been described in terms of the person to whom they provide care; in terms of the physical demands of care, such as the number and types of tasks they do for the person they care for and in terms of the time demands of care (Silliman and Sternberg, 1988).

For this study we adopted the definition used by the Australian Bureau of Statistics (ABS) which applies to informal caregivers and defines them as

a person of any age who provides help to a person with a disability or a person who is aged 60 or more for any of the (following) activities ... self-care, mobility, verbal communication, health care, home help, home maintenance and gardening, meal preparation, financial management and letter writing and transport. (ABS, 1994: 44)

In Australia, as in other developed countries, the community care system relies heavily on assistance provided by informal caregivers. Despite the importance of the assistance they provide, informal caregivers face considerable difficulties. One group in particular are those who continue, or seek to continue, in paid work. The reasons for these difficulties are complex and have arisen as a result of the intersection of demographic and social changes and their related policy developments.

The combination of the ageing of the population and increasing numbers of married women entering the workforce over the last 2 to 3 decades, has meant that many more paid workers now also have primary caregiving responsibility for disabled and frail aged people, as well as, in many cases, children.

Parallel to this has been the increasing importance of paid employment and the trend towards community care. With the adoption of the principle of the active society, where participation in the labour market is regarded as the preferred means of support for people of workforce age, (Kalisch, 1991) employment is an important aspect of most peoples lives. Paid employment is also associated with many benefits such as a sense of social identity and the development of social contacts, access to superannuation and income. For many caregivers employment also represents an important safety valve, providing regular relief from caring.

Accompanying these developments has been an increased reliance on care provided at home by unpaid family caregivers. Following policy changes in Australia at both Commonwealth and State levels, there has been a marked shift away from the provision of care in residential institutions. These policies rely heavily on assistance provided by informal carers in home settings.

These trends suggest that trying to balance the demands of paid work and caregiving will in the future become a common problem for families, affecting most, if not all workers at some stage of their career.

In the absence of an accepted set of strategies to alleviate the problems experienced by employed or job seeking caregivers, as the provision of childcare has done for the parents of young children, the Department of Health and Family Services commissioned the SPRC to identify comparable measures which could be implemented to help caregivers whose family responsibilities include caring for disabled or elderly people. Our study documents some of the strategies which allowed caregivers to balance the often conflicting demands of paid work and caregiving.

The factors which effect a caregivers ability to provide care and maintain paid work can be described as falling within two broad areas, refer to Figure One: Internal and External Factors

The first which we have termed 'internal' factors are directly related to, for example, the characteristics of the caregiver and the person who receives care, the amount of informal support available and the characteristics of the household or the family arrangements in which caregiving occurs. External factors are those which lie outside the family or household situation, such as workplace conditions, income support and support services. There is a great deal of interaction between the internal and external factors, one often influencing or resulting in the other.

2 Methodology

The study consisted of two main components: a review of selected research and a small scale empirical study. The literature review drew together existing research and focussed on the specific issue of combining caregiving and paid work. The key issues facing employed caregivers and some of the strategies they used to remain in employment were explored using a series of focus groups.

Participants for the focus groups were drawn from the members of a range of voluntary organisations, such as the Carers Association and the Alzheimers Association. Participants in the study were caregivers who were ideally:

• the main provider of assistance to a elderly, disabled or ill person, living at home;
  
• providing at least five hours of assistance per week; and
  
• either currently employed, had left work to provide care or were looking for work.

Although a number of male caregivers participated in the study, most of our caregivers were employed females between 40 and 59 years of age. Most caregivers cared for their parents and/or their spouse and were either working part time or full time. However, quite a number of caregivers had left work to provide care. Most of the people they cared for suffered from a physical disability or cognitive disability such as alzhiemers disease.

3 Internal factors

The study identified a number of internal factors which had an impact on a caregivers' ability to maintain or continue in paid work, as shown in Figure Three: Internal Factors. The nature of the interaction between these factors are complex. Although we cannot generalise from the focus group results, many of the themes emerging from the groups paralleled those in the literature.

The experience of Mary, a participant in one of our focus groups, highlights the interaction between employment and several internal factors such as the type (Gatz, Boyd and Melins, 1987; Gilhooly, 1984; Houlihan, 1987; Poulshock and Deimling, 1984 cited in Scharlach, 1989; Gibeau and Anastas, 1989; Atkin, 1992; Twigg, 1992; Levin et al., 1994; Twigg and Atkin, 1994; Beresford, 1995) and the degree of the disability of the care recipient and the intensity of caregiving required (Brody et al., 1987; Hicks, 1988; Gibeau and Anastas, 1989; Scharlach, Sobel and Roberts, 1991; Evandrou and Winter, 1993; Stone and Short, 1990 cited in Neal et al, 1993; Neal et al, 1993; Gottlieb, Kelloway and Fraboni, 1994). Refer to Figure Four: Mary.

Mary cares for her severely disabled son, John, who has Down Syndrome. John is 15 years of age and often has periods where his behaviour is described as anti-social. Mary also cares for her elderly father who is 86 years of age and has 2 other sons who are not involved in providing care to John. Mary's mother and husband died when John was only very young. Mary works part-time. Her work options are severely limited by the hours of the school which her son attends. This means needing to leave work at 3pm and being unable to start work before 9am. She is finding it more difficult to care for John as he grows up, becoming more difficult to manage and too heavy to lift.

The presence of problem behaviour, where the need for help is often unpredictable, and the number of hours in which the care recipient could be left alone have been found to be significant predictors of impact on employed caregivers (Stone and Short 1990 cited in Neal et al 1993).

In Marys' case, she says:

'The relatives are sometimes willing but only for a very short time. They don't know how to cope so well with John, so I can't say that I have left him with anyone except my mother for a long period of time ... I changed about 4 or 5 carers. I also couldn't get anyone because John was very heavy, nobody wanted to lift him'

Marys' long term work prospects seem bleak. She will have to make a decision in the future about long term care for her son when he leaves school. There is also a strong possibility that Mary may have to leave work to provide full time care for John.

Assistance provided to both the caregiver and the receiver of care, by friends and family, has been found to be a major help in relieving the strain of caregiving (Cantor, 1983; George and Gwyther, 1986; Mathews, Werkner and Delaney, 1989; Montgomery, Gonyea and Hooyman, 1985; Noelker and Wallace, 1985).

The type of care required also has some impact on caregiver employment (Gibeau and Anastas, 1989; Atkin,1992; Hoskins, 1993). In Mary's case, the care required by her son meant that she felt unable to draw upon the support of family or friends. As Mary says,

'People who are distant relatives have invited John out to an outing or something like that, but they get tired very quickly because John has anti-social behaviour and they don't know how to cope with him so well. So I don't like to allow him to be taken out very often by relatives who are not trained in any way to cope with his behaviour'

In contrast, another caregiver found that the support he received from his family enabled him to continue to work full time and also be the main carer of his wife who suffers from Multiple Schlerosis. As he says:

'I've always had as much family support as I could realistically expect. My in-laws live 10 minutes away and they are just wonderful human beings ... they come to our place usually twice a week and as much as I get all the washing done and all that sort of stuff in the morning before I leave for work, my mother-in-law puts it out, brings it in, folds it up, puts it away etc .. all this positive helpful stuff.'

Nevertheless, it is not always easy to ask or accept help from family and friends. As one caregiver points out:

'If you're going to be burning out you don't want to involve other people ... because you really need them to be around when things get really bad, you can't involve them all the time'

(Carer employed full time, cares for spouse who recently suffered a stroke)

The type of care provided by caregivers has also been identified as an important factor. This includes the intensity of caregiving required and the type of care provided. Caregivers who provided help with personal care tasks, such as washing, dressing and toiletting, found it harder to maintain employment, compared to those who provided assistance with more basic household tasks. This was because personal care tasks were often required to be performed at short notice and generally needed a more intensive level of care and was therefore more difficult to fit into a paid working day.

The impact of providing care for cognitively impaired older people, such as those suffering from Alzheimers or dementia has been well documented in the literature. Caring for these people was found to be more demanding and particularly stressful compared to providing care for older people who were physically impaired. A study of employees of a large American company found that caregivers of cognitively impaired people provided one and a half times as many hours of assistance per week than other caregiving employees. They were more likely to report interference between work and caregiving and twice as likely to consider quitting their job because of the demands of caregiving (Scharlach, 1989).

Caregivers who share a home with a person for whom they provide care have been found to experience more stress than caregivers who do not live with the person they care for (Gottlieb, Kelloway and Fraboni, 1994; Laczko and Noden, 1993; Neal el al, 1993; Levin et al., 1994; Ettner, 1995; Baldwin, 1995). Although sharing a home often eliminates the need for a caregiver to manage two households, co-residency has been found to increase caregiver stress (Neal et al, 1993). Statistics from the UK General Household Survey suggested that co-resident carers of older people spent approximately 53 hours per week providing assistance compared to only 9 hours per week for non-resident carers (Levin et al, 1994, Baldwin, 1995).

Gender has been identified as another significant factor in determining the impact of caregiving on employment. Research has shown that women were more likely than men to report difficulty combining work and family responsibilities (Neal et al., 1990; Anastas, Gibeau and Larson, 1990). This could be a result of women providing a greater amount of help than men, for example, the 1995 ABS statistics showed that the number of women who reported having primary responsibility for caregiving was approximately twice that of men (ABS, 1995: 30).

Caregivers from a non-English speaking background (NESB) or who have migrated from another country often face the same difficulties as those from Australian backgrounds. However, they often experience additional difficulties related to differences in culture and language and the move to a new country. Caregivers from different cultural and non-English speaking backgrounds have been reported to have difficulty gaining access to appropriate formal services, income support and informal support (McCallum & Gelfand, 1990; Twigg, 1992; Yamine Consultants, 1994 and Fischer, 1995).

One focus group was held with caregivers with an Asian background who were recruited through the Australian Chinese Community Association (ACCA). The experiences of one of the participants, Susan, a caregiver born in Hong Kong and whose mother came to live with her through the Family Reunion Scheme 10 years ago, highlights some of the issues, as shown in Figure Five: Susan.

Susan works full time and also provides cares for her frail aged mother who is 79 years of age. Susan helps her mother with a number of tasks including, English translation, doing the shopping, housework, preparing meals, managing her mothers personal affairs and driving her mother to appointments. Susan also has other responsibilities towards her husband and family which became a source of conflict between her and her mother.

When her mother arrived in Australia, Susan found herself in a very difficult situation. She found that her mother had very different expectations and attitudes regarding social support, community services and doctors. Similar to other older Chinese people, her mother was suspicious of western doctors and modern medical techniques, preferring to rely on herbal medicines. Nor was she initially accepting of help from mainstream or ethnic specific services. The situation was compounded because her mother was unable to speak English, and she felt isolated and lonely, particularly as she had left her friends and family in Hong Kong.

Although Susan's employer was very sympathetic to her situation, she found it very stressful trying to cope with a full time job while at the same time worrying about her mother and her responsibilities towards her husband and child.

Susan was referred to ACCA 6 months ago by her GP. ACCA provides many services such as Chinese Meals on Wheels and day care for older Chinese people. By arranging activities and outings ACCA provided Susan's mother with regular contact with other people her own age. By joining ACCA, Susan found that her mother was able to exchange views and experiences with other older people in similar situations and has since become more understanding and accepting of the new environment in which she lives. The activities and social contact have provided her with an interest apart from the family and moved her focus away from her immediate family. Susan commented:

I am trying my level best to re-educate her, to put her in a different light, to ask her to accept that this is a different environment and a different society ... she is living in Australia, not in China or Hong Kong, 20, 30 or 40 years ago (Translated from Chinese to English)

The conflict experienced between Susan and her mother were not unique. Many of the other caregivers identified with her problems, particularly those involving differences in expectations from older family members and the lack of understanding exacerbated by isolation and language barriers. The caregivers from this focus group came up with some novel solutions to their problems which included programs and services which enabled older people to have regular contact and give them other interests outside of the family.

4 Conclusion

In conclusion, it is clear that a number of 'internal' factors, such as the disability of the care recipient, the care provided and the amount of informal support available, have a significant impact on combining caregiving and employment. The case studies drawn upon illustrate the diverse experiences of caregivers which are often a function of the interaction between a number of internal and external factors. It is therefore important that both internal and external factors are considered together in the development of policy relating to caregiving and employment.

• A total of 24 female and 6 male caregivers participated in the study, most of whom were aged between 40 to 59 years of age;

• Most caregivers provided more than 10 hours of assistance per week;

• Two thirds of caregivers provided both personal and housekeeping assistance while the remainder provided home care assistance only;

• The majority of caregivers were providing assistance to their parents or their spouse;

• The employment status of caregivers covered a range of different status's;

• About half of the caregivers were working full time, six caregivers worked part time;

• Quite a few caregivers had left work to provide care. Only one was looking for work;

• Most care recipients suffered from a physical or cognitive disability. A small number suffered from degenerative diseases, such as Multiple Schlerosis and Parkinson's Disease;

• Caregivers utilised a range of services, although home care and day care were most commonly used.

• characteristics of the caregiver

• the care recipient's type of disability

• the care recipient's degree of disability

• the intensity of caregiving required (eg number of tasks required and frequency of help provided)

• the type of care provided (eg personal: washing, dressing or household tasks: cooking cleaning)

• whether caregiver lives with the care recipient

• amount of informal support available

• gender

• ethnicity

Figure Five

Name:	Susan.
Age:	45.
Sex:	Female.
Relationship to care recipient:	Daughter.
Care recipient's disability:	Frail, aged.
Type of assistance required:	Assistance with English translation, housework, meal preparation, managing personal affairs and transport.
Length of time caregiving:	10 years.
Amount of assistance provided by caregiver:	More than 10 hours per week.
Other family:	Husband and young child.
Current employment status:	Employed full-time.
Workplace conditions:	Sympathetic employer.

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