Mothers caring for children and young people with developmental disabilities: intent to work, patterns of participation in paid employment and the experience of workplace flexibility

Abstract

Caring alters plans to return to work and changes career trajectories for many primary caregivers of children with disabilities, most of whom are mothers. The Juggling Work & Care study was a South Australian cross-sectional mail-out and online survey for carers of children and young adults with developmental disabilities aged 0–25 years, which investigated work participation, work–life balance and psychological well-being. This study shows that mothers who were in a couple relationship and primary caregivers for their child (n = 287) were less likely to be in paid employment and worked fewer hours than mothers in the general population, regardless of age of child. Work participation was shown to be strongly related to the severity of child disability. Impacts of caring for mothers were significant. Over a quarter of mothers who had intended to work after the birth of their child had not done so. As well, many mothers who had returned to work reported reduced job opportunities and career progression. Of concern, 9 out of 10 mothers were unaware of their right to request a change in working arrangements to assist them to care. Changes in workplace support for carers, for example, awareness of legislation and flexible leave entitlements, as well as increased community supports such as appropriate and accessible (child)care, could improve the financial and social circumstances of families and result in significant benefits to Australia's economy.

S'occuper d'un enfant handicapé altère de manière significative la stratégie de retour à l'emploi et les trajectoires de carrière du premier responsable de soin de ce dernier qui le plus souvent s'avère être la mère. L’étude «Concilier Emploi avec Son Rôle de Donneur de Soins » réalisée en Australie du Sud présente une enquête transversale effectuée par mailing et par sondage en ligne ayant pour cible les parents soignants d'enfants et de jeunes adultes âgés de 0 à 25 ans présentant des troubles du développement. Cette étude s'est penchée sur la participation au travail, l’équilibre entre vie professionnelle et vie privée et le bien-être psychologique. Il ressort de cette étude que la probabilité pour une mère en couple et première dispensatrice de soins à son enfant (n = 287) d'avoir un emploi salarié est inférieure à la moyenne de la population et que ses heures travaillées sont également moindres, ce indépendamment de l’âge de l'enfant. Cette étude met également en évidence une forte corrélation entre la participation à l'emploi et la sévérité du handicap de l'enfant. Le rôle de donneur de soin par la mère entraine pour celle-ci des impacts significatifs. Plus d'un quart de mères dont l'intention était de retourner travailler après la naissance de leur enfant n'a pu le faire. De plus, de nombreuses mères ayant repris un emploi ont remarqué une réduction de leurs possibilités d'emploi ainsi qu'une dégradation de leur avancement professionnel. Il est également préoccupant de noter que 9 mères sur 10 ignoraient leur droit à demander une modification de leur organisation de travail afin de leur faciliter la prise en charge de la prestation de soin à l'enfant. Une évolution de l'assistance apportée aux mères soignantes dans le cadre du lieu de travail (i.e. une sensibilisation aux législations en vigueur, au droit aux congés souples, à l'accès accru aux aides communautaires comme des services de garde appropriés et physiquement accessibles à l'enfant) pourrait conduire à une amélioration des conditions financières et sociales de ces familles et impacterait de manière positive et importante sur l’économie australienne.

Keywords:

• developmental disability
• work participation
• mothers
• employment
• flexibility
• care

Mots-clés:

• handicap
• participation au travail
• mères
• emploi
• flexibilité
• donneur de soins

Funding

This work was supported by the Channel 7 Children's Research Foundation [grant number 12531].

Notes on contributors

Dr Angela Crettenden is a research fellow in the department of Knowledge and Innovation at Novita Children's Services (Novita). Angela completed her Ph.D. in 2008, which involved researching the impact of time stress on the well-being of parents caring for children with developmental disabilities. Her interest in finding better ways to support carers has led to the Juggling Work & Care study and to studies exploring the intersection between disability and child protection. Angela has an extensive background working as a clinical psychologist in a range of settings across Australia, specialising in children's problems and childhood disability.

Dr Annemarie Wright is a research officer at Novita Children's Services and has a Ph.D. in the area of exercise and health psychology. Her research interests are diverse and include: the interplay between caring for children with disabilities, parental work participation and well-being; outcomes for children with disabilities living in voluntary out-of-home care; and the link between physical activity participation and well-being.

Dr Natalie Skinner is a senior research fellow at the Centre for Work + Life. She has been undertaking research and publishing in the area of health and well-being in the workplace for many years. She has a particular interest in psychological health (e.g. stress, burnout and job satisfaction), job quality (work intensity, flexibility and work hours) and work–life interaction. Natalie is currently responsible for managing the Australian Work and Life Index.

Additional information

Funding

Funding: This work was supported by the Channel 7 Children's Research Foundation [grant number 12531].