Parenting in a crisis: conceptualising mothers of children with cancer

Social Science & Medicine 55 (2002) 1835–1847

Parenting in a crisis: conceptualising mothers of children withcancer

Bridget Younga,*, Mary Dixon-Woodsa, Michelle Findlayb, David Heneyc

aDepartment of Epidemiology and Public Health, University of Leicester, Mary Dixon-Woods, 22-28 Princess Road West,

Leicester LE1 6TP, UKbDepartment of Cardiology, Glenfield Hospital, Groby Road, Leicester, LE3 9QP, UK

cChildren’s Hospital, Leicester Royal Infirmary, Leicester LE1 5WW, UK

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’Fbeing

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. r 2002

Elsevier Science Ltd. All rights reserved.

Keywords: Cancer; Children; Mothers; UK

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

*Corresponding author. Tel.: +44-116-252-3214; fax: +44-

116-252-3272.

E-mail address: [email protected] (B. Young).

0277-9536/02/$ - see front matter r 2002 Elsevier Science Ltd. All rights reserved.

PII: S 0 2 7 7 - 9 5 3 6 ( 0 1 ) 0 0 3 1 8 - 5

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-oncologyFan

approach that has emphasised the psychological diffi-

culties 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 pathol-

ogy, 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 child-

hood health and illness.

Methods

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 participate and their informed consent was

obtained. To avoid burdening families when children

were in a critical condition, mothers were approached

only when a consultant had indicated that their child

was sufficiently stable. Research ethics committee

approval was obtained for the project.

MF, who was not involved in the care of any of the

children, did all the interviews. Sixteen were conducted

in parents’ homes and four in hospital. Three fathers

were present for some or all or the interviews, though

the mother was the main participant in all interviews.

Interviews followed a narrative form with mothers being

asked to ‘tell their story’ of their child’s illness, in an

attempt to give precedence to the ways in which mothers

themselves constructed and interpreted their experi-

ences, and defined their roles. An interview prompt list,

initially based on a review of the literature and

discussions within the project team, was used to guide

the first 2–3 interviews. This was refined as new areas of

interest emerged from these and subsequent interviews,

and covered topics such as events leading up to

diagnosis, beliefs about the illness, beliefs about and

experience of treatment, and mothers’ perceptions of

their role. All interviews were audio-taped and tran-

scribed verbatim.

Analysis

Data analysis was based on the constant comparison

method (Glaser & Strauss, 1967). Analysis began after

the first 2–3 interviews and sampling continued until

theoretical saturation was achieved. Transcripts were

read 3–4 times and open codes were generated to

initially break down, examine, compare and begin to

categorise the data. This continued until broader

patterns were identified, and these were eventually

organised into an initial thematic framework for

subsequent analysis. Assisted by QSR NUD.IST soft-

ware (version 4) (Gahan & Hannibal, 1998), data were

coded into organising themes and sub-themes in an

iterative process in which the initial thematic framework

was constantly refined and data compared for simila-

rities and differences in the accounts of the respondents.

In this way themes were refocused or altered to achieve a

good fit with the data and to represent its properties as

fully as possible, whilst also incorporating negative cases

(Murphy, Dingwall, Greatbatch, Parker, & Watson,

1998).

B. Young et al. / Social Science & Medicine 55 (2002) 1835–18471836

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 completed treatment within the previous 4

months. Nine children were diagnosed with leukaemia,

nine with solid tumours and two with brain tumours.

Theoretical saturation was reached by the 14th

transcript, and later transcripts provided data to confirm

and consolidate the thematic framework. The following

sections are organised around the principal themes

generated by the data, and include illustrative quota-

tions from the transcripts of the interviews. For each

quotation we include an identification number for each

mother, and give the gender and age in years of their

child in brackets.

Biographical shift

Mothers’ accounts of the period leading up to

diagnosis of their child’s cancer performed several

strategic narrative functions, as we have reported

elsewhere (Dixon-Woods, Findlay, Young, Cox, &

Heney, 2001). The narratives served, among other

things, to demonstrate the significance of the striking

biographical disruption (Bury, 1982) associated with the

diagnosis, signalling the transition from mothers of a

‘healthy’ child to mothers of a child in crisis.

The consequences of the biographical shift to mother

of a child with cancer were far-reaching. Being a mother

of a child in crisis required a fundamental redefining of

mothers’ self-identities and the work of motherhood.

Mothers contrasted the certainty and control of their

pre-illness lives with their post-diagnosis lives: their

narratives emphasised how the diagnosis activated a

process of constructing a new self-identity which

brought with it new responsibilities and roles. The new

self-identity was reflexively constructed, grounded in the

experiential realities of childhood cancer, drawing on

culturally prescribed expectations of carers and mothers,

and modified through a ‘‘cycle of re-appraisals and

revisions in the light of new information and knowl-

edge’’ (Williams & Calnan, 1996, p. 1617). While

mothers’ self-identities were continuously iterated and

redefined as the illness progressed, our analysis suggests

that there are characteristic features of the self-identity

and experiences of the mother of a child with cancer. We

will suggest that, although they are not themselves ill,

mothers experience many of the consequences of chronic

illness, including biographical disruption, compromise

in role function and deterioration in quality of life.

Additionally, mothers take on emotional and caring

responsibilities that are socially and culturally mediated,

and analysis of their care-giving role benefits from the

substantial sociological literature on care-giving,

motherhood and childhood.

Proximity and confinement

A key obligation generated by the diagnosis of

childhood cancer was the felt need for almost all the

mothers in our study to be physically close to the sick

child, which we will call the obligation of ‘proximity’.

The period immediately following the diagnosis was

experienced by most mothers in the study as cata-

strophic, demanding a reorganisation of everyday life

around the ill child.

Just the bottom drops out of your world. It’s

dreadful, it really is, you can’t describe the shock.

It’s not like when someone dies, and I know that’s

stressful, but when it’s your child and you know you

want to protect your child. Mother 11 (female, aged

5).

You remember it being this horrific time where

everything you know is tipped upside down but I just

wanted to get him right you know. Mother 16 (male,

aged 9).

As we have described elsewhere, some mothers had

experienced a dispute with doctors over the significance

of their child’s symptoms and had struggled to ensure

their child be investigated in the pre-diagnosis period

(Dixon-Woods et al., 2001). While these mothers tended

to voice a sense of relief that at least they now knew

what was wrong, the period of their child’s diagnosis

was still experienced as a time of major upheaval.

Many mothers lived full-time on the ward with their

child in the weeks or months following the diagnosis,

returning home only for brief periods, often for only a

couple of hours at a time. During subsequent acute

phases of the illness and treatment, periods in hospital

might last several weeks, with shorter stays or day

admissions for later phases of treatment, but still usually

involved mothers being with their children most of the

time, whether at home or in hospital.

With few exceptions, most of the day-to-day caring

work was done by mothers, though some fathers or

other relatives would provide occasional respite support.

For some mothers ‘keeping watch’ and closely monitor-

ing their child’s well-being and treatment were impor-

tant functions during this period, but ‘‘comforting’’ was

their primary responsibility. Confirming James’ (1988)

suggestion that childhood illness intensifies children’s

dependency and vulnerability, mothers pointed to how

B. Young et al. / Social Science & Medicine 55 (2002) 1835–1847 1837

the trauma of the illness and treatment had greatly

augmented their child’s needs for ‘comfort’. In their

accounts of why it was they who took on this role,

mothers emphasised the special character of the mother–

child relationship in achieving ‘comfort’.

I stayed [in hospital] day in and day out because, if

her father or anyone from my in-laws’ side came to

help her she just didn’t want anyone to come close to

her because she was having so many needles and

injections and she had a little cannula whichywould

get blocked and she would have to have another one.

And she was screaming and she had bruises all over

her hands and legs. And because of her weakness

they could never get enough blood or put the needle

in the right veinsyand she was really in pain. It was

a really hard timeyshe didn’t want anyone next to

her, no one, no doctors, no nurses. And she’s holding

my hand day and night to say don’t go away, don’t

leave me alone, and I couldn’t leave her like that so I

was there with her until they allowed me to come

home with her. And I was there for more than 2

months. Mother 13 (female, aged 4).

Mothers of adolescents spoke of their own need to be

there or keep watch over their child, even if their

presence was not always desired; their own felt obliga-

tions over-rode attempts by their children to limit their

roles.

I can’t leave her on her own, I can’t. She tells me

sometimes ‘‘Why don’t you just go home?’’ And I

can’t. I just think, I couldn’t leave a child in hospital,

it just wouldn’t, I couldn’t sleep at home. Mother 6

(female, aged 17).

The period of confinement imposed by the obligation

of ‘proximity’ could sometimes be a source of comfort to

mothers themselves, affirming that they were function-

ing effectively in their care-giving role. Mothers drew a

clear distinction between the hospital world and home

world, speaking of how moving between the two could

underline the seriousness of their child’s illness, and how

being in hospital at least created a space for them to

come to terms with the illness (one in which less exacting

norms of health could be applied). Confinement also

engendered a sense of shared experience with other

mothers, and served narratively as a demonstration of

adequate parenting (Baruch, 1981).

It is important to note, however, that ‘proximity’

clearly came at a high price for the women’s pre-

diagnosis self-identity, their own needs and other role

functions. Several mothers spoke of inhabiting a

‘‘different’’ or ‘‘alien’’ world during periods in hospital,

as well as referring to feelings of confinement or

containment. A few pointed to feelings of isolation or

restriction, but a striking feature of mothers’ accounts of

this period was the oblique or circumspect nature of

references to their own needs. For example, mothers

usually slept in camp beds at their children’s bedside in

open wards, and although some described the cramped

conditions, lack of privacy and the difficulties they

experienced in sleeping, it was unseemly to be overly

critical.

Sleeping on the ward is no big deal if it’s your child.

In my opinion they are your foremost priority. I

would have stood up all night. Mother 16 (male, aged

9).

Clearly, in a world in which the role of mothers is

constructed as being one of obligation and selflessness, it

was difficult for them to give voice to their own needs.

Some mothers did refer to experiencing a sense of

longing for some ‘‘space’’ for themselves, and some

spoke of actual breaks from caring or keeping watch.

However, when such breaks were described, they were

carefully managed so as to appear ‘legitimate’: most of

these accounts contained references to the role of health

professionals in helping to legitimise these absences.

Well I’ve majority stayed with her when she was in,

and I did come home for a couple of nights because

she was giving me a massive depression and I

couldn’t handle her mood swingsyI had a word

with doctor and he said to give you a rest I think you

ought to go home, even for a couple of hours. Mother

19 (female, aged 13).

‘Proximity’ had significant costs for other aspects of

mothers’ role functioning. In particular, they experi-

enced huge compromises in their ability to function in

their roles as mothers of their other children, spouses,

housekeepers, and in their employment. They were

unable to perform basic caring tasks for their other

children, including taking them to school, preparing

food, helping with homework and so on. Good quality,

reliable support with the care of other children therefore

became of crucial importance to them. Several fathers

took on this responsibility, but this was not always

possible in single parent families or when fathers refused

or were unable to take on these duties, sometimes

because they too wanted to spend time with their sick

child.

Because my husband didn’t help I had to stay there

all the while with [my daughter] and I was there

constantly. I couldn’t get back to see [the baby] and

they didn’t bring her in to meybasically the first six

weeks I was in there with [my daughter] I’d forgotten

I’d got [a baby]. That’s dreadful but I just completely

forgot about [her] because she was only a little baby.

But it was just [my daughter] and me. Mother 11

(female, aged 5).


In some cases lack of childcare resulted in the entire

family spending prolonged periods on the ward, which

could be disruptive for the families concerned and for

other patients, relatives and staff. More usually other

relatives and friends took on the care of the other

children, though this could bring a range of organisa-

tional difficulties and be a source of conflict. Some

mothers also worried about exhausting or overburden-

ing these sources of support.

And my two other sons wereyjust chucked about

from pillar to postyI was at the hospital every night,

people were going up in the day so I was going up in

the evening when it was harder for people, so my kids

were just [with] whoever would have them. Mother 1

(male, aged 17).

Mothers who had other children who were teenagers

were also concerned about the impact that their absence

from their children’s lives might have, and though the

obligation to be with their sick child partly ameliorated

this aspect of role strain, many still experienced guilt,

conflict and regret at being away from their other

children. The need to negotiate expectations about

obligations that are ambiguous or conflicting has

previously been noted in studies of employed women

with small children (Brannen & Moss, 1991).

A few mothers commented that quality of their

relationship with their partner had declined since their

child had been diagnosed. While elevated levels of

marital distress have been observed in some quantitative

studies (Dahlquist et al., 1993), this aspect of role strain

was mentioned infrequently by the women in our study,

and relative to the concern they expressed about their

children it seemed to be given little priority.

Several mothers who had been in employment or

education before their child’s illness had to relinquish

these commitments when their child was diagnosed.

Mothers experienced ‘‘grief’’ for their former lives in

which former aspirations could be fulfilled, in the same

way as patients with chronic illness grieve for their

former selves (Kelly, 1986).

But it chokes me up now because there’s so much

strain it does put on your family because you want to

be with everybody and you can’tyJust before my

daughter fell ill I’d got a job at her school as a dinner

lady and I was wanting that job for ages and I’d only

been there a month and I had to give it up. Mother 10

(female, aged 12).

Ensuring children’s co-operation with treatment

The role of care-giving was a complex one for

mothers, involving a range of nursing, technical and

emotional tasks for their children alongside their routine

childcare. For mothers of young children and young

adolescents in particular, managing their child’s co-

operation with treatment, including taking medicines,

physical examinations, unpleasant treatment procedures

and mouth care, was a source of considerable concern

and distress.

The only way I could get her to do it, and sometimes

now I wish I didn’t say it to her, but the only way I

could actually get heryand I sat down with her one

day and I said ‘‘You do know that unless you let the

doctors give you your treatment to you you’ll

die’’yI wouldn’t recommend anybody to do that

but it workedyI mean a child psychiatrist would

probably say that was completely the wrong thing to

doybut I was just desperate and nobody else could

give me any advice because I’d tried everything.

Mother 11 (female, aged 5).

But there were days when she wouldn’t take [her

medicines] and you’re thinking oh God she’s got to

have them. And you’re panicking and you’re getting

at her and she’s getting upset. I think that was the

most strenuous thing out of everything. Mother 10

(female, aged 12).

Mothers expressed an overwhelming sense of respon-

sibility for ensuring their child’s co-operation, and

frequently exhausted a range of strategies to do this,

including insistence and force when co-operation could

not otherwise be gained. The significance of managing

children’s co-operation went beyond the everyday role

of mothers as their children’s ‘‘accountable agents’’

(Voysey, 1975, p. 43) a role that they perform by

exerting varying degrees of control over children

(Ribbens, 1994). It destabilised their usual manner of

parenting and frequently turned into a no-win situation:

refused treatments might compromise their child’s

recovery, while the use of force might damage their

relationship with their child, undermine their child’s

trust or risk ‘traumatising’ their child.

Services could play an important role in supporting

mothers in managing their child’s co-operation. In

particular, staff who were skilled at establishing

successful relationships with children could mean that

children were less likely to resist treatments, and

complain about or become upset by visits to the

hospital. Only a few mothers spoke of intervening to

attempt to control how or when treatments were carried

out, and when they did so it was mostly in a very limited

or restricted way.

I was really very upset about it because I wanted to

do the best for her and yet I couldn’t because I just

didn’t have the assertiveness to say look my daughter

wants this now, could she have it? I couldn’t do that.



It has been suggested that this apparent reluctance of

mothers to act as advocates for their children may

indicate the faltering of some aspects of their authority

as parents in the early stages of their child’s illness

(Patistea, Makrodimitri, & Panteli, 2000). However, we

would suggest that this issue should be seen in the

context of severe and life-threatening illness where

treatment is viewed as life-saving, and where the medical

agenda becomes particularly potent. In his study of

patients undergoing coronary bypass surgery, Radley

(1996) suggests ‘‘concerns of life and death’’ create a

‘‘special relationship with medicine’’ for patients.

The healing powers of medicine lie in bringing about

an ordering of, a meaning within experiences that, at

their best, are inchocate, and, at their worst, revolve

about a hollow of angst. This ordering takes place

because the patient believes in the surgeon’s and the

nurses’ commitment to care in general, and to his or

her well-being specifically. (Radley, 1996, p. 134)

Viewed from this position we suggest that the mothers

who shied from the role of advocacy for their children

were not abdicating their authority as parents; instead,

we concur with Radley that mothers’ investment in their

children’s survival means that they accommodate to the

demands of the treatment in a reflexive process that (no

doubt) weighs its pros and cons, but perhaps more

importantly involves an [re]ordering of meaning that

transforms the very basis of their judgements. It is not

simply that all other concerns are subordinate to their

child’s survival: in accommodating to their children’s

treatment, mothers are engaging in something that needs

to be understood in the language of belief, trust and

faith, and it is these concepts that underpin their

relationship with medicine and its practitioners.

Maintaining children’s physical well-being

Perhaps because it was one of the few areas where

mothers felt they could reasonably exert some direct

influence or control in protecting their children,

concerns about the adequacy of their child’s diet and

about avoiding infections were prominent in their

accounts. For example, they spoke of their worries

about infections and of the measures they took to avoid

their child being exposed to infections.

But that’s the thing I worry aboutyher catching

things from other childrenyI couldn’t let her go to

parties in case one of them has chicken pox or

measles or something. I suppose that could be a

problem when she has to go back to schoolyif

[another] child gets chicken pox or something then

[she] won’t be able to go to school either. Mother 17

(female, aged 6).

Mothers’ beliefs about the role of nutrition in

recovery from disease, which is akin to what Helman

(1994, p. 44) has termed ‘‘food as medicine’’, added to

their drive to ensure the nutritional adequacy of their

child’s diet. Treatment for cancer was widely believed to

have a continuing impact on children’s food preferences,

and these might change from week to week, creating an

additional set of difficulties for mothers. Regarded as

unpalatable and of poor nutritional quality, hospital

food was seen by mothers as thwarting them in ensuring

their child had an adequate diet, particularly when

children’s appetites were depressed or their food

preferences changed by treatment. They were particu-

larly critical of the sort of food available for children,

described as consisting largely of ‘‘beefburgers, tinned

pasta, chips and beans’’, which they contrasted with

their children’s preferred foods: vegetables and salads.

Mothers emphasised the quality of food that they

provided at home, again asserting their claim to

adequate parenthood, and compared this with the

poorness of food at the hospital. The way in which

food was prepared and kept warm was of concern, as

was the lack of choice and poor availability of non-

Western foods for families from ethnic minorities.

Several strategies were adopted to overcome these

problems: hospital meals could be supplemented with

cereals, sandwiches and yoghurts, which were generally

available, and by visits to the hospital canteen. Some

mothers only managed to resolve these difficulties with

food by returning home for a few hours every day to

prepare meals to bring into the hospital, by asking

visitors to bring food from home or by purchasing food

from nearby shops and cafes.

So it can be stressful because I have to cook the

dinner sometimes and being vegetarian your diet is

different anywayyeating Western food all the time,

the only thing we can eat [in the canteen] is chips.

You get so tired of it all the time, there’s not a lot of

vegetarian food, so we would take food into her. So

it’s basically running around to make sure you come

home and cook the dinner and going back in, and

while I’m cooking the dinner she’s by herself so it’s

very pressured. Mother 3 (female, aged 11).

When at home, several mothers purchased special

food in the hope of tempting their child to eat a little

something, though this strategy proved very expensive

for some families. Ensuring their child’s nutrition also

had the potential to generate tension and conflict.

She just don’t want to eat. Very, very hardly. You

sitting down with her morning to evening and a

couple of bites, that’s all. She don’t like. Anything

you give herFdon’t likeFno matter whatever-

yAnd it makes you angry, she’s having all this

medicine and she needs some food. And I can’t cope


with her just to go hungry and I lose [my] temper.


Though mothers living with their children on the ward

had themselves little access to good quality food, they

rarely complained, again suggesting the extent to which

their own needs had become subsumed by those of their

child.

Emotional work: managing emotions

Mothers took on a dual role in relation to emotional

work (Hochschild, 1983), managing their own and their

child’s emotions, a feature of emotional work that has

been noted in research in other contexts (Exley &

Letherby, 2001). However, a particularly strong theme

running through the accounts of the mothers in our

study was their emotional interdependence with their

children, and a suggestion that they ought to share in or

help to carry the burden of their children’s experiences.

These ideas were expressed in a variety of ways including

speaking of the difficulty of watching their child’s

distress, using the term ‘‘we’’ when speaking of their

child’s experiences, and by wishing that they could

somehow swap places with their child.

That’s when it’s tough when she’s poorly, but when

she’s fine then I can cope with it really well myself.


An important aspect of emotional work involved

keeping children entertained or occupied, a task that

was viewed as important in preventing psychological

distress in children. Most mothers believed that their

children should be shielded from adults’ emotions,

indicating the type of emotional ‘‘labour’’ to which

James (1989) refers in her writings on the care of dying

patients, but this was particularly difficult to manage in

the days after diagnosis when mothers themselves felt

vulnerable and diagnosis had often not yet been revealed

to children. Concern about the appropriate expression

of parental emotions remained prominent throughout

the course of the illness, and again this could be

complicated by the felt need to filter or censor the

information given to children in mothers’ roles as

‘information brokers’. Expressing emotions when chil-

dren were not around was seen as one way of dealing

with these difficulties, being open with children about

their illness was another, but ultimately mothers still felt

compelled to maintain a ‘‘cheerful’’ disposition in the

presence of their children.

She asks so many questions, in depth questions so she

does know, she is aware, and she’s asked about

percentages and all sorts of thingsyshe knows I’m

worried but in front of her I try and stay

cheerfulyBut she’s so cheerful in herself that in a

wayyyou’ve got to be cheerful with her. You can’t

come on the ward and wring your hands and say

‘‘why’’? sort of thing. Mother 7 (female, aged 14).

You don’t know what [the future] holds for her, every

time we try and portray a positive picture for her, so

it’s hard. It’s hard. Mother 3 (female, aged 11).

Helping children to ‘‘pass as normal’’ (Goffman,

1968) was another aspect of mothers’ emotional work,

though finding the right balance was difficult, and this

could be a challenge for mothers to reconcile with their

own emotional needs.

I mean I just sit there when she’s throwing up in the

room reading my book and I take in what I’m

reading, I don’t watch her, so to the extent that she

actually pressed the bell for the nurse to come to take

the tray awayyAlthough she doesn’t want me

watching her, she was also annoyed that I was

perhaps ignoring her. Mother 6 (female, aged 17).

I found it very difficult at first to leave him at the

[school] gate because I didn’t want to part with him.

It’s the fact that you’re thinking well if he doesn’t

make it this is another day that I’ve missed with him.

Mother 16 (male, aged 9).

Mothers became what Charmaz (1991) has termed

‘‘alert assistants’’ in acting in subtle or invisible ways to

protect their child’s identity, or to represent their status

as ‘‘ordinary’’ (Prout, Hayes, & Gelder, 1999). However,

helping their child to ‘‘pass’’ was made more difficult for

mothers because the dominant culturally available

identity of a child with cancer is one of heroism and

stoicism. Some mothers’ accounts attempted to show

how their children negotiated expectations of their self-

identity, and demonstrated the emotional work of

mothers in protecting their sick child’s identity.

She needs you not to be too nice to her, she needs you

to treat her as normal as possible. Mother 6 (female,

aged 17).

Even when he had his 3rd block [of chemotherapy] he

played football. He’ll come up for a lumbar puncture

on a Tuesday and go to football training. It’s not that

I’m pushing him. He sees it as normal for him, and

he’s a little boy, a normal little boy, the same as his

friends. Mother 16 (male, aged 9).

The need to protect their child’s emotional well-being

meant that mothers had to negotiate new forms of

relationship with their child. As we suggested earlier,

usual childrearing and discipline strategies were desta-

bilised: applying normal rules risked mothers being

judged as harsh or unfeeling, but making too many

allowances for children’s illnesses risked being blamed

for ‘spoiling’.


I think you tend not to want to tell her off for

something that she’s done because you don’t want to

upset her. You don’t want her to be upset because

she’s got enough to worry about at the moment with

this. Mother 7 (female, aged 14).

Mothers also faced new dilemmas, for example gift-

giving by friends and relatives was difficult to manage,

particularly as it could undermine their emotional work

in helping their children to ‘‘pass’’, and risked magnify-

ing siblings’ feelings of exclusion or neglect.

Emotional work: communication with children

Quality of communication, information provision and

relationships with staff were seen by mothers as playing

a crucial role in supporting them as they fulfilled their

parental and caring obligations. Though mothers were

deeply shocked and distressed at hearing the diagnosis

of their child’s illness, and many described being unable

to ‘‘take in’’ information, health professionals’ explana-

tions of the illness and treatment, including written

explanations, were nevertheless greatly valued at this

time, and helped to acknowledge mothers’ responsibility

for their children and their special involvement in

ensuring their well-being.

Dr H was good, she explained everything, she told us

about which programmes and that which we could go

on, which didn’t mean anything to me at that time, it

was just like double dutch you know. You were still

adjusting to knowing that your daughter’s got

leukaemia and knowing that she’s got to have

treatmentyAnd the way they explained everything

to you, that was brilliant, they wrote everything

outyWhereas if they just say right, they’ve got to

have that, that and thatyyou think what the hell are

they doing to her. So every step of the way you knew

what was going on. Mother 10 (female, aged 12).

All mothers found it very difficult to break news of the

diagnosis to their children. Initially, a few requested that

the diagnosis be withheld from their children, and some

felt that using the word ‘‘cancer’’ was inappropriate,

opting instead for terms such as ‘‘tumour’’ or ‘‘leukae-

mia’’. As Alderson (1993) found in her study of

children’s consent to surgery, there was considerable

variation between mothers in their accounts of what

they told their children about their illness and its

treatment. Beliefs about child development and chil-

dren’s vulnerability implicitly and explicitly mediated

how mothers communicated with their children, but

their approach to information-giving was extremely

complex and not simply related to their child’s age. For

example, mothers of some of the younger children in our

study spoke of adopting a very open and frank approach

to communication, while mothers of some of the older

children were more guarded, perhaps at least in part due

to the belief that older children and adolescents had a

greater appreciation of the seriousness or significance of

cancer. Recent experience of older relatives who had

died from cancer could also have a major impact on how

mothers managed communication with their children.

We never told her it was cancer, we told her she had

leukaemia you know. The leukaemia, to [her] that’s

not a cancer whereas her grandmother died just over

a year ago with cancer and that’s why I wouldn’t let

nobody tell [her], you know that she had it. Mother


I decided right from the start that he should know as

much as he wanted to know and be aware of how

serious it was. Mother 15 (male, aged 6).

Difficulties with information giving did not end when

news of the diagnosis had been broken, and several

mothers experienced ongoing problems in dealing with

their children’s anxieties about their illness and acting as

a ‘broker’ for their information needs.

I don’t know what to say to her when she asks me. I

have to think quick, and then I might be giving her

the wrong answer. She knows some people die of

cancer, some people live longer, some people need

less treatment, some people need more treatmen-

tyit’s just some people get more poorly than others.

She won’t accept that, she thinks because she’s got

cancer she’s not going to live to be an old lady and

have a family of her own. Mother 19 (female, aged

13).

Staff who could establish a good relationship with

children, and who had highly developed skills in

communicating with children, were seen as performing

a pivotal role in facilitating children’s emotional well-

being as well as their physical care and treatment. This

confirms Mayall’s (1996) finding that for mothers, the

care of their children’s bodies cannot be conducted

separately from the care of their minds.

And she don’t mind if she’s coming on the ward

because she really likes the staff and she don’t mind

staying on the ward. Mother 12 (female, aged 13).

Although most mothers’ experiences of communica-

tion and information giving by health professionals were

positive, a few worried that they might be creating a

‘‘nuisance’’ by asking too many questions, or were

concerned about overburdening staff who were ‘‘very

busy’’. Occasional lapses in communication were re-

ported by some, which usually entailed treatments being

administered or changed without parents’ knowledge.

This was something that mothers found particularly

upsetting, pointing to how it made them feel undermined

or threatened. With the improving health of their


children, mothers felt a concomitant increase in their

responsibility for monitoring and maintaining their

children’s health, a responsibility that could be fru-

strated or blocked by information provision that was

perceived as inadequate. As their child reached the stage

of ‘‘doing well’’ or was discharged from hospital some

mothers became concerned that the needs of children

were no longer being prioritised, and worried that they

might somehow be forgotten or overlooked.

I mean we were given quite a lot of information right

at the beginning when [my son] was first diagnose-

dyand then I feel it kind of tapered offyI mean you

ask questions and people are happy to answer those

questions butyit’s not always a good time in clinic

or when [my son] is having treatment to ask

questions, obviously people are busyy. And once

or twice [my son] has had a kind of reaction to

somethingyand nobody had sort of said ‘‘Oh this

might happen.’’ And when I got him over [to the

hospital] it was very calmly explained to me that this

is something that happens quite a lot. And I thought

okay that’s fine, that’s stopped me from worrying but

I’d just driven sort of 40minutes from [home] with a

very sick little boyyIf that had been explained to me

I could have dealt with that here. Mother 15 (male,

aged 6).

Guardians of biography

Mothers’ accounts suggested that the diagnosis of

cancer threw into sharp relief the role of mothers as

guardians of their child’s biography. One aspect of this

guardianship, as we described earlier, was mothers’

work to protect their sick child’s identity. In their role as

‘biography guardians’, mothers were particularly con-

cerned about their children’s futures: that their children

would survive their cancer, and, moreover, that they

would survive without significant physical, psychologi-

cal, or developmental impairment. In seeking to protect

their children’s futures, mothers had to negotiate

prevailing cultural discourses about cancer and child

development.

One of the tasks that mothers undertook in the

narrative construction and reconstruction of the bio-

graphy of childhood cancer is a familiar one in patients

with a chronic illness: a search for an explanation for

their child’s disease. As in Comaroff and Maguire’s

(1981) study, some mothers blamed environmental

causes for their child’s cancer. However, some also

wondered if they were themselves to blame for having

failed to protect their child from hazards during

pregnancy and childhood.

I really want to know what caused it so that I can

prevent it happening to [my other daughter] or

prevent it recurring. I know they don’t know, but if

they could just say you had your hair coloured when

you were pregnant, or you used [a certain brand of

washing-up liquid], or anything silly. Mother 11

(female, aged 5).

In this way, the diagnosis threatened not only their

child’s biography but also their own. A further threat to

mothers’ own biographies, and to their self-identity as

adequate parents, was the perception that they had

failed as advocates and protectors for their children. For

example, looking back on the pre-diagnosis period one

mother wondered whether she had been sufficiently

vigilant in detecting the early symptoms of her

daughter’s illness.

I still haven’t come to terms with the fact that [she] is

so ill after being so healthy, it just happened so

quickly. I think, and you try and think back to,

perhaps you missed the warning signs. Mother 7

(female, aged 14).

The search for the meanings of the illness for their

child’s future biography must be understood within a

temporal framework. Given the rarity of childhood

cancer, mothers lacked a stable and well-informed set of

lay beliefs or resources for managing their experiences,

and in the early stages of the illness their beliefs about

cancer were based mainly on their experiences or adults

with the disease, which generally characterised cancer as

likely to be fatal. Against this backdrop, assurances

from health professionals that much could be done

medically for children with cancer were not easily or

quickly accepted by a few of the mothers.

Cancer to me, everyone who’s has it has diedy. And

I imagine there couldn’t be a cure. One of me aunts

had it in her bones, and the other one had it in her

stomach and they died, and to me I thought that’s

what would happen to [my daughter]. Even when the

specialist explained, it was still cancer to me. Mother


Later, as concerns about the mortality began to

recede, mothers became deeply worried about the

impact of the disease and its treatment on other aspects

of their child’s well-being.

I just sort of think, you know when they’re a baby

and you think, is there something wrong with them

and then they grow up perfect and it’s just a shame

that she’s lost her hearing like this. Mother 9 (female,

aged 14).

Beliefs about child development mediated mothers’

worries, particularly about the impact of the disease on

psychological health. A few regarded children as

naturally resilient and hardy, and suggested that certain

features of childhood immaturity might help in their


successful adjustment. More commonly among mothers

in our sample, however, childhood was seen as a time of

increased vulnerability, a time when children and young

people were more susceptible to difficulties because of

their immaturity, emotional dependence and limited

ability to understand their illness and its treatment.

Beliefs about children’s capacity for adaptation, and

particularly their psychological plasticity, added a

further dimension to mothers’ concerns. Significant for

some was the fear that their child’s experiences during

the illness would have a long lasting impact and

permanently alter the course of their development.

Mothers thus appeared to have absorbed concepts from

psychological discourses on child development.

We were really scared to say whether she’d go back to

being normal or not because she couldn’t walk, she

couldn’t eat, she couldn’t drink. Mother 13 (female,

aged 4).

To put a 5 year old through that is hell and back. I

mean for an adult they know they’re trying to help

youybut a 5 year old doesn’t realise what’s

happening and what they’re doing to her. Mother


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 sig-

nificance for mothers as they cared for their child

through the demanding and extremely unpleasant cycles

of treatment that the illness required. By maintaining

physical proximity, mothers acted to ‘keep watch’ and

provide ‘comfort’ to their children, and they went to

great lengths to secure the emotional and physical well-

being of their children as everyday concerns such as diet

or ensuring their child’s co-operation became increas-

ingly significant. Managing these obligations had many

adverse effects on mothers’ quality of life, including

severe role strain. Discourses on the particular character

of the mother-child relationship and child development

explicitly and implicitly shaped mothers’ concerns and

their reflexive constructions of their experiences. To

consider these issues further, and how they might feature

in conceptualisations of mothers who care for ill

children, we will suggest that it is useful to draw on

several distinct bodies of literature that have previously

been given little consideration in published work on

parents of children with chronic illnesses such as cancer.

It is clear from our findings that one of the most

prominent roles involved in mothering a child with

cancer is that of carer, although few writings in psycho-

oncology appear to have drawn on the extensive

literature on informal carers. This literature has high-

lighted the value of social constructions in under-

standing the experience of carers and their interactions

with services (Twigg & Atkin, 1994), and while it

concentrates largely on spouse and filial carers of elderly

people, some of the earliest writings in this field focused

on the experiences of parents caring for disabled

children (Voysey, 1975; Wilkin, 1979; Glendinning,

1983). Taken together, this literature has generated

several useful concepts for understanding the experience

of mothers as carers. The idea of ‘‘engulfment’’ (Twigg

& Atkin, 1994), in which the carer finds it difficult to

separate themselves from the suffering of the cared-for-

person, where caring dominates their life and other

aspects of their self-identity are submerged by caring, is

a particularly important one. Many of the mothers in

our study could be described as ‘‘engulfed’’ by their role

of caring for their sick children, but to characterize the

mothers in our study simply as ‘‘engulfed carers’’ does

not give adequate recognition to their status and self-

identity as mothers, nor does it acknowledge the

implications for their caring role of the social construc-

tion of children as vulnerable and dependent. Their

child’s illness may have changed aspects of their self-

identities as mothers and brought some new roles, but

for the women in our study it was the special character

of the mother–child relationship or bond, and their

obligations as mothers, that gave them a unique position

as carers within the medical and social worlds.

To fully understand the situation of mothers as carers

therefore, it is important to engage with the sociological

literature on motherhood. Feminist theorising on the

family and motherhood has identified how for women in

particular, motherhood is both a regulator of their lives

(Boulton, 1983) and a major component of their self-

identity (Richardson, 1993). Though women with

children increasingly adopt roles outside the domestic

sphere, mothers’ emotional identification with their

children remains strong (Mayall, 1996), and notions of

maternal self-sacrifice in ‘‘putting the children first’’

(Richardson, 1993) and of children’s ‘‘best interests’’

(Sclater, Bainham, & Richards, 1999) remain powerful

in both public and private discourses about motherhood

and childhood.

Motherhood is thus defined (at least in part) in

relation to social constructions of children and child-

hood. The emerging sociological study of childhood has

highlighted how the social construction of children has

until recently been dominated by largely uncontested

concepts, rooted at least in part in psychology, and how


these concepts have structured the cultural climate of

mothering (Burman, 1994): children are seen as incom-

petent and immature (James, Jenks, & Prout, 1998), and

as vulnerable and dependent upon adult attention to

ensure their well-being. Children’s ‘vulnerability’ arises

not just from their ‘immaturity’: as people who are

valued for what they will become as well as for what

they are, much concern centres on protecting children’s

future selves. Jenks (1996) has developed the concept of

‘‘futurity’’ to encapsulate this idea. This view of child-

hood is embraced by most western societies, and within

its framework, parents, and particularly mothers, are

morally (and to some extent legally) responsible, not just

for their children’s current well-being but also for their

future well-being.

James (1998, p. 97) has suggested that childhood

illness represents ‘‘a condensed symbol of childhood

itself through intensification of concepts of dependency

and vulnerability’’. Juxtaposed as they are for the

mothers in our study, it seems that childhood and

illness combined to heighten the significance of the

diagnosis of childhood cancer. The Western construc-

tion of children as ‘‘natural innocents’’ (Ribbens, 1995),

the rarity of cancer in children, the threat the illness

poses to their ‘‘futurity’’, and the cultural association

between cancer and death added to the sense of

catastrophe that surrounded the illness. Moreover, our

data would suggest that having a child made vulnerable

by cancer augmented mothers’ obligations to protect

their children and prioritise their interests. However,

with the reordering of meaning prompted by their child’s

severe and life threatening illness, these obligations

required that mothers accommodate to the demands of

medicine even though this meant submitting their

children’s resistant bodies to unpleasant treatments

and manipulating their wills in ways that threatened

the entitlements of childhood. The enormous internal

conflict and emotional work these opposing pressures

generated for mothers was one of the most striking

features of their accounts.

How is the situation of mothers who care for

chronically ill children to be conceptualised? First, it is

clear that having a child with a life-threatening illness

significantly alters several aspects of mothers’ roles.

Mothers assume an obligation of ‘proximity’ to their

child, which can compromise other aspects of their role

function (including their responsibilities for and rela-

tionships with their other children and their partners),

which has significant implications for their own quality

of life. Second, in having a child whose vulnerability has

been greatly magnified by cancer, other aspects of

mothers’ roles and obligations are intensified, including

their felt responsibility and protection for their ill

children, and this takes place against a backdrop of

greater complexity, reordered meaning and diminished

control. Our data suggests this aspect of parenting a

child with cancer was a major source of conflict and

distress for mothers. Third, we would draw attention to

the cultural discourses about motherhood, child devel-

opment, childhood and cancer that the mothers in our

study had to negotiate. These discourses shaped their

concerns, and influenced the context in which they cared

for their child and their reflexive constructions of it.

Among the other consequences of this is a de-

legitimatising of their own needs, which are subordi-

nated discursively and functionally to those of their sick

child. Finally, having a child with a life-threatening

illness means that mothers’ own biographies are

threatened and disrupted, and they experience profound

grieving for their former lives. Graham (1984) and

others have pointed to how keeping a child healthy is a

key component of the work of women, one through

which their adequacy is judged by themselves and by

others. The mothers in our study experienced the

consequences of their child’s illness and treatment, and

lived with the possibility that he or she might die or

experience adverse long-term effects. Moreover, as they

worked to guard their sick child’s biography, they also

had to live with the altered self-identity of being a

mother of child with cancer, and by virtue of their

situation as mothers, many felt somehow implicated or

responsible for what had happened to their child. Even if

their children go on to experience little or no long-term

effects, they will remain ‘‘survivors’’ of childhood

cancer. In this sense the mothers in our study have lost

their status as mothers of ‘‘natural innocents’’.

Failure to recognise the special situation of mothers of

chronically ill children risks misrepresenting or distort-

ing their experiences. Psycho-oncology has been useful

in raising awareness of the significant numbers of

parents of ‘‘survivors’’ of childhood cancer who

experience continued distress once the illness has abated.

However, there are dangers in focusing on parents’

experiences solely within an individualised and decon-

textualised framework. Within such frameworks, par-

ents’ concerns about, for example, their felt culpability

in their child’s illness, or their tendency to blame the

medical profession for their child’s late diagnosis, is

considered a sign of their maladaptive coping (Eiser,

Havermans, & Eiser, 1994). In recognising how having a

child with chronic illness shapes and reshapes the

biographies and obligations of mothers, we suggest that

these tendencies are part of the narrative configuration

of parenting a child in crisis: they are the ordinary,

reflexive devices the women in our study used to

understand and represent their extraordinary experi-

ences of parenting. The reluctance of women in our

study to give voice to their own needs can be understood

as a means of demonstrating their adequacy as mothers

of an ill child, and as a means of avoiding drawing

attention away from their children, but may result in

health professionals failing to recognise or meet


mothers’ own needs. Our findings point to the impor-

tance of supporting mothers in ways that enable them to

fulfil their role as parents of a child in crisis, to the part

that services such as information provision can play in

helping them meet their obligations, and serves as a

reminder that help that might be construed as under-

mining their role and obligations is likely to be less than

welcome.

We believe our conceptualisation provides an ade-

quate fit with the accounts of most of the women in our

study, but there were a few women whose accounts did

not fit certain aspects of our conceptualisation. In

describing our findings we have generally tried to

indicate where this was the case. Moreover, while we

have tried to draw attention to a number of issues that

are important in conceptualising the situation of

mothers with children with chronic illnesses such as

cancer, we recognise that there are a number of

important questions that may affect this conceptualisa-

tion, but which we have been unable to address because

of the limitations of our data. First, recent research has

pointed to the role of children’s gender in influencing

how mothers construct their role in managing the health

of their older adolescent children (Williams, 2000). As

our study focused on mothers of younger as well as older

children, we could not address the issue of gender

separately from child age. Second, because of resource

limitations, we were mostly unable to triangulate the

comments of the mothers in our study with those of

fathers or other close family members, and though we

interviewed children we found that it was rare for them

to comment in detail on their mothers’ experiences.

However, we aimed to base our conceptualisation

largely on how mothers themselves constructed their

situation, so it is unlikely that the inclusion of data from

these other parties would significantly alter our conclu-

sions. Third, though our study focused on mothers of

children who were on or recently off treatment for their

cancer, further research examining how mothers con-

struct their situation beyond this time would be useful to

explore the degree to which biographical disruption

extends beyond the treatment period, and to identify

how our conceptualisation would need to be adapted to

encompass the likely diverging experiences of mothers in

the longer term. Finally, we decided to focus on mothers

as they remain primarily responsible for childrearing in

Western societies, but would suggest that consideration

be given to conceptualising the situation of fathers,

other close family members and friends.

It is now 20 years since Comaroff and Maguire (1981,

p. 116) cast doubt on the appropriateness of using

‘‘criteria of psycho-social normality, coping and adjust-

ment’’ for assessing the impact of having a child with

cancer, yet such individualised and decontextualised

approaches have continued to dominate the research

agenda despite their modest explanatory value (e.g.

Sloper, 2000). Our study has focused on the particular

ways in which mothers’ roles and biographies are shaped

or altered by having a child with chronic illness, and on

how their obligations and their reflexive constructions of

these obligations impact on their experience and govern

how they manage caring for their child. We suggest that

future research can move forward by recognising these

psychosocial processes and the social context within

which being a mother of a child with chronic illness

takes place.

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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Documents

Parenting in a crisis: conceptualising mothers of children with cancer