Working and caring for a child with chronic illness: Barriers in achieving work-family balance

Journal of Management and Organization, Mar 2008 by George, Ajesh, Vickers, Margaret H, Wilkes, Lesley, Barton, Belinda

ABSTRACT

This paper shares some findings from the initial, qualitative stage of a larger, national study currently being undertaken in Australia, exploring the experiences of parents who are working full-time and caring for a child with chronic illness. The findings highlight the limited support that most parents receive in their workplace, especially from employers. In-depth interviews revealed the negative and unsupportive attitude that employers had towards these parents. The provision of flexible work arrangements and leave entitlements, which were critical supports for these parents, were rarely offered by employers. Respondents reported high levels of frustration and difficulty balancing their dual roles.

Keywords: chronic illness; disability; employment; flexibility; family-friendly workplace; work-family balance

In recent years, several demographic trends have impacted on the caring responsibilities of parents. The rise in single-parent families (Australian Bureau of Statistics [ABS] 2004; Bianchi 2000), the increase in women employed outside the home (ABS 2004; United States Bureau of the Census 1992) and the rise of dual-earning families (Hughes 1998; Lewis, Kagan & Heaton 2000) have increased the number of parents who are entering the workforce. For these parents, especially those working full-time, the main challenge has been trying to maintain a work-family balance. Currently, there are a lot of debates about the actual meaning of work-family balance. Some have described it as, 'a satisfying, healthy, and productive life that includes work, play, and love?' (Kofodimos 1993: 13) while others have defined it as, 'the tendency to become fully engaged in the performance of every role in one's total role system?' (Marks & MacDermid 1996: 421). It has also been defined as, 'satisfaction and good functioning at work and at home with a minimum of role conflict' (Clark 2000: 349). Although these definitions are varied they do share common components; namely the need to maintain time, involvement and satisfaction balance. The latest definition of work-family balance, which seems to be the most appropriate for this research, encompasses each of these three components and defines it as, 'the extent to which an individual is equally engaged in - and equally satisfied with - his or her work role and family role' (Greenhaus, Collins & Shaw 2003).

A number of factors have been identified that can contribute to achieving a positive work-family balance. These have included: having flexible working hours, the ability to take time off for appointments, childcare assistance, reasonable working hours and the availability of maternity, paternity and parental leave (Forth, Lissenburg, Callender & Millward 1997; Hogg & Harker 1992). Many organisations, in an attempt to ease the pressures on these parents, have tried to offer these support conditions to working parents by introducing specific policies referred to as family friendly policies (Butler, Gasser & Smart 2003; Richardson & Prior 2005). Unfortunately, these policies and practices have tended to be targeted towards working parents, especially mothers, of young and healthy children (Lewis et al 2000). The needs of parents of children with chronic illness who are working have received insufficient attention.

Children with chronic illnesses represent a significant proportion of the world population. Estimates indicate that approximately 31% of children under the age of 18 years have at least one chronic illness (Melnyk, Feinstein, Moldenhouer & Small 2001; Vickers, Parris & Bailey 2004). More specifically, in Australia, there are almost 300,000 children aged between zero and fourteen years (7.5%) who have a disabling chronic condition and who are cared for at home (Australian Institute of Family Welfare [AIHW] 2002). Although there is much evidence that highlights the stresses and strains facing parents of children with chronic illness, most of the research has neglected the issues facing such parents who are also working. This paucity of research is largely due to a prevailing assumption that parents, especially mothers of children with chronic illness, are not or should not be employed (Kagan, Lewis & Heaton 1998; Vickers 2006). However, these parents do need to work for the same economic, psychological and social reasons as other parents (Kagan et al 1998). A recent Australian study showed that out of 547 parents who cared for a child with chronic asthma, 85 per cent of fathers and 45 per cent of mothers were in full-time employment (Mihrshahi et al 2002).

The few studies that have tackled the issues facing these parents have shown that the stressors involved in working and caring for a child with chronic illness are tremendous and those involved require much greater support (Freidman, Litchfield & Warfield 1995; Lewis et al 2000; Vickers 2006). The most commonly-cited difficulty facing these parents has been locating appropriate and affordable child care. Although parents of healthy children also need to deal with issues of child care quality and cost, parents of children with chronic conditions face additional constraints, such as limited availability of child care due to the inability or unwillingness of child care providers to accept children with chronic conditions especially those requiring constant supervision (Berk & Berk 1982; Chang & Teramoto 1987), logistic problems like distance from home and the lack of well trained caregivers that can provide optimal care for their child (Chavkin, Wise, Romero & Smith 2002; Cuskelly, Pulman & Hayes 1998; Freeman et al 1995). The situation is further aggravated during school holidays when working parents need to make alternative arrangements to care for their child.