Parenting in a crisis: conceptualising mothers of children with cancer
Introduction
This paper focuses on how mothers’ experiences of caring for a child with a chronic illness should be appropriately understood and characterised. Using original empirical research on childhood cancer, this paper explores social constructions of motherhood, childhood and childhood illness, and the complex roles undertaken by mothers who care for ill children. It will, in so doing, seek to challenge the under-conceptualised models of parenting children with illnesses such as cancer that have dominated this area.
Childhood cancer was chosen as the focus for this study because it represents a significant crisis for families; at a time of major transition, it serves to define and redefine the roles of mothers as parents and as carers. Several factors combine to underline the critical nature of the illness: though survival has dramatically improved over the last 3 decades (Stiller, 1994) it still poses a significant threat to life, its onset is often acute, and its treatment is intensive and demanding. It is also a chronic condition: treatment may extent for several years, and it is associated with a range of adverse long-term effects, including disability and infertility (Lackner et al., 2000), so it carries the potential to disrupt permanently parents’ and children's biographies.
Much of the existing literature on children with cancer and their families is dominated by psycho-oncology—an approach that has emphasised the psychological difficulties experienced by children (Varni, Katz, Colegrove, & Dolgin, 1994) and their mothers and fathers (Kazak et al., 1998), but has failed to engage with the burgeoning interpretive literature attempting to theorise and contextualise the experience of illness from the perspective of patients and their families (Anderson & Bury, 1988). Within psycho-oncology, research has tended to include mothers merely as proxies to report for their children (Eiser & Morse, 2001). Research that has focused on mothers themselves has mostly been conducted within a discourse of psychological pathology, informed by a body of studies focusing on the measurement of maladjustment and coping in parents (Grootenhuis & Last, 1997), and its implications for children's later adjustment (Sawyer, Streiner, Antoniou, Toogood, & Rice, 1998). Some qualitative work has attempted to document parents’ experiences of having a child with cancer (Martinson & Cohen, 1988; Yeh, Lee, Chen, & Wenjun, 2000) and its aftermath (Van Dongen-Melman, Van Zuuren, & Verhulst, 1998), but little attention has been given to understanding the social processes surrounding mothers who care for sick children, including the obligations upon which their roles are founded, and how their reflexive constructions of their parenting role mediate their experiences.
This paper aims to investigate the experiences of mothers living with a child with cancer. By drawing on writings from the sociology of care-giving, motherhood and childhood, which hitherto have not featured in considerations of their experiences, we aim to contribute to the literature on the experience of being a parent of a sick child and consider how mothers should best be conceptualised in the social science literature on childhood health and illness.
Section snippets
Study design and participants
As part of a wider study of mothers’ and children's experiences and beliefs about childhood cancer, semi-structured interviews were carried out with 20 mothers of children who had a confirmed diagnosis of leukaemia, malignant solid tumour or brain tumour and were aged between 4 and 17 years. Eligible mothers whose children were attending one paediatric oncology unit in the English Midlands during the recruitment period were invited to participate. Twenty of the 21 eligible mothers agreed to
Findings
The sample of mothers recruited to the study was socially and ethnically diverse. Twelve mothers were not in paid employment and the others were mainly clerical or manual workers; the children's fathers were in a socially mixed range of occupations. Six mothers were single, divorced or separated, and four of the families were of South-Asian origin and the remainder white. Children had been diagnosed between 1 and 36 months before the interview and were either receiving treatment or had
Discussion and conclusions
This paper has highlighted several issues that combine to shape mothers’ experiences of living with a child with a life-threatening chronic illness. The biographical shift to mother of a child with cancer required a fundamental redefining of mothers’ self-identities, bringing some new technical and nursing roles, whilst intensifying some of their existing roles and obligations. Prominent among the latter were parental obligations around protection and responsibility, which took on a heightened
Acknowledgements
We would like to thank the participants in our study and the staff who made it possible. We are grateful to the UKCCSG, the Ward 27 Children's Cancer Fund and the Sir Jules Thorn Charitable Trust for the funding which helped us to carry out the interviews. Our thanks go to Keith Abrams for his support with the study and to Catherine Exley for her helpful comments on an earlier draft of this paper.
References (50)
- et al.
Ambiguity and the search for meaningChildhood leukaemia in the modern clinical context
Social Science and Medicine
(1981) - et al.
Parents’ accounts of obtaining a diagnosis of childhood cancer
The Lancet
(2001) - et al.
Predicting post-traumatic stress symptoms in mothers and fathers of survivors of childhood cancers
Journal of the American Academy of Child and Adolescent Psychiatry
(1998) The subjective experience of chronic diseaseSome implications for the management of ulcerative colitis
Journal of Chronic Disease
(1986)- et al.
Influence of parental and family adjustment on the later psychological adjustment of children treated for cancer
Journal of the American Academy of Child and Adolescent Psychiatry
(1998) - et al.
Experience of parents of childhood cancer survivorsA qualitative analysis
Patient Education and Counselling
(1998) - et al.
The ‘limits’ of medicalization? Modern medicine and the lay populace in ‘late’ modernity
Social Science and Medicine
(1996) Children's consent to surgery
(1993)- Anderson, R., & Bury, M. (Eds.). (1988). Living with chronic illness: The experiences of patients and their families....
Moral talesParents’ stories of encounters with the health professions
Sociology of Health and Illness
(1981)