Elsevier

Social Science & Medicine

Volume 55, Issue 10, November 2002, Pages 1835-1847
Social Science & Medicine

Parenting in a crisis: conceptualising mothers of children with cancer

https://doi.org/10.1016/S0277-9536(01)00318-5Get rights and content

Abstract

Much research on the experiences of parents of children with cancer has been conducted within a discourse of psycho-pathology, or has tended to see parents mostly as a proxy source of information on the well-being of their children. Using empirical data from semi-structured interviews with 20 mothers of a child with cancer, in one area of the UK, we draw on sociological literatures on motherhood, childhood, caring, and chronic illness to suggest a more helpful and informative way of understanding their experiences. We suggest that mothers, although not ill themselves, experience many of the consequences of chronic illness. Biographical disruption begins for them when they first notice something wrong with their child, and intensifies with diagnosis, altering their sense of self and their social identity. The diagnosis brings with it a set of new responsibilities and role expectations, including an obligation of ‘proximity’—being physically close to their child at all times to provide ‘comfort’ and ‘keep-watch’. For mothers, caring evokes an intense emotional interdependence with their sick child, and involves a range of technical tasks and emotional work, including acting as ‘brokers’ of information for their child and managing their cooperation with treatment. Managing these obligations was achieved at high cost to the mothers themselves, and resulted in severe role strain by compromising their ability to function in other roles, including their role as the mother of their other children. Against the backdrop of a severe and life-threatening illness, everyday concerns about their child's diet or appropriate discipline take on a new significance and carry a heightened potential for generating conflict and distress for mothers. In presenting their accounts, mothers draw on prevailing cultural discourses about motherhood, childhood and cancer, and these clearly influence the context in which they care for their child, and shape their reflexive constructions of their experiences. Caring for a child with cancer had many adverse implications for the quality of life of the women we studied. Mothers of a child with cancer warrant study in their own right, and such study benefits from interpretive perspectives.

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.

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