Working full time and caring for a child with a chronic illness

Abstract

There are more than 300 000 children in Australia with a chronic illness. It is widely known that parents of these children experience multiple stressors associated with their caring responsibilities and require support in various areas. However, an increasing number of these parents are entering the workforce. More than half of all carers (of children and adults) in Australia are employed. For those parents who are working full time, managing their dual roles can be very demanding. Unfortunately, there is limited knowledge about the support needs of these parents. The aim of this study is to identify the support needs of parents who are working full time and caring for a child with a chronic illness in Australia and develop a valid questionnaire that can assess their needs. In this study, a three phase sequential mixed method design was adopted. The first phase involved in-depth interviews with 12 parents who were working full time and caring for a child with a chronic illness. Content analysis of the interview data identified nine categories pertaining to the challenges and support needs of these parents. These categories were used in the second phase to develop a questionnaire that addressed the support needs of these parents. The third phase involved the piloting and validation of the questionnaire to determine the extent and nature of the support needs of these parents across metropolitan areas of Australia. The pilot study was conducted through a national survey across Australia. A total of 341 eligible questionnaires were obtained. The quantitative and qualitative data from the pilot study were analysed using descriptive and content analysis respectively. The validation of the questionnaire was conducted using exploratory factor analysis and reliability analysis. The findings from this study show that there are three major areas where support is required for these parents: namely, in their family life, work life and child's health care. In their family life, parents identified regular access to specialized carers that is affordable and appropriate as a key support need. Receiving such practical support was crucial as in many families both parents relationships; coping with the daily caring tasks; and managing the additional expenses incurred. The present findings suggest that many current support services and entitlements do not address the needs of these parents. In their work life, parents encountered numerous constraints trying to maintain full-time employment. Formal support such as family-friendly policies and informal support in the workplace was identified as critical for these parents to maintain a work-family balance. However, the findings highlight that supportive policies are only helpful if they are employer supported. Employers were described by parents as being unsupportive and having flawed assumptions about them which deterred these parents from seeking support in the workplace. In their child's health care, parents faced numerous difficulties while interacting with health professionals, all of which had the potential for aggravating their grief. Existing support information was found to be inadequate and inaccessible for these parents. These findings stress the need for greater emotional and informational support from health professionals. Lastly, the results from the validation process established the validity and reliability of the questionnaire and identified five coherent factors entitled: impact on employment; impact on relationships; family-life support; work-life support; and child's healthcare support that underpinned the support needs of these parents. This final factor solution provided further confirmation of the key findings from this study. As a result of this study we now have detailed knowledge from a national perspective about the support needs of these parents and a valid and reliable questionnaire that can evaluate their needs. This information can assist employers, health professionals and the federal government in formulating improved support and informational services for this important, yet neglected, area of family life in Australia.

Date of Award	2008
Original language	English