Working and Caring for a Child with Chronic Illness: Challenges in Maintaining Employment

Abstract

This paper shares some pertinent findings from an initial, qualitative stage of a larger, national study currently being undertaken in Australia, exploring the support needs of parents who are working full time and caring for a child with chronic illness. The findings presented here depict the negative impact of these parents caring responsibilities on their work life and the increased stress they experience trying to maintain full time employment. In-depth interviews revealed how these parents had to rearrange their working hours, use up their leave entitlements, work unsatisfactory hours, sacrifice their careers and even change their jobs in order to balance their dual roles. In addition, the findings also highlight the negative and unsupportive attitude that employers had towards these parents. These employment conditions were extremely stressful and frustrating for parents affecting their physical and emotional well being.

Working and caring for a child with chronic illness: A review of current literature

“…Two studies focused on detailing the challenges amongst parents of children with diverse chronic conditions that had significant and severe physical, genetic, neurological, and systemic impairments—specifically challenges/barriers in maintaining employment (George et al, ) and achieving work–family balance (George et al, ). George et al () explored and described the experiences of a sample of 12 parents working FT and caring for a child who had a chronic illness. Through in‐depth, semistructured interviews, this study illustrated that employment can have both positive and negative effects for parents.…”

“…Yet parents reported that having flexible jobs was difficult and did not decrease stress, but rather increased frustration due to putting aside career aspirations, working unsatisfactory hours or conditions, having little access to leave entitlements, and no guarantee of work. The negative attitudes of employers, particularly their "uncaring," "inconsiderate," and "unsympathetic" approaches (George et al, 2008b) to understanding the pressures and responsibilities that they faced, added to parents' stress. George et al (2008a) also illustrate parental experiences, particularly issues faced in the workplace.…”

“…To further support the above discussion, research has shown that time demands and the stress of caring, for both fathers and mothers of children with disability and diverse chronic conditions, affect a parent's job in terms of performance, maintaining their job and also their relationships with employers (George et al, 2008b;Wright, Crettenden, & Skinner, 2015). For parent well-being, links have been shown between caregiver burden and depression and anxiety in parents of a chronically ill children (Oers et al, 2014), with impacts of parent wellbeing on other aspects of life, such as more dysfunctional parenting, for example, failing to provide boundaries or consistent discipline (Lohnberg, Howarth, & Clay, 2008) and child outcomes, such as poorer management of illness and in turn poorer child well-being and coping (Compas, Jaser, Dunn, & Rodriguez, 2012).…”

The role of natural disaster in individual and relational adjustment in Sri Lankan mothers following the 2004 tsunami

“…Research in other contexts indicates that caring for a child with a persistent health condition creates myriad unique and difficult challenges, particularly for mothers who, across cultures, tend to function as the primary caregiver of children. These challenges include anxiety about a child's well-being, problems with maintaining employment, and a lack of social support (Burnes et al, 2008;George et al, 2008;Rini et al, 2008). It is clear that the presence of a serious health problem in a child has the potential to create distress for caregivers.…”

Unreliable Bodies: A Follow‐up Twenty Years Later by a Mother and Daughter about the Impact of Illness and Disability on their Lives

“…This feature of family life often leads to isolation of the family from neighborhood and community just when support from a wider network would be most helpful. As more and more households require two incomes to meet modest economic standards, coping with employers becomes another challenge for families with a chronically ill child (George, Vickers, Wilkes, & Barton, , ). Challenges confronting parents include modifying work schedules, limiting working hours, and finding suitable coverage for children when a parent cannot be home.…”