Elsevier

The Lancet

Volume 357, Issue 9257, 3 March 2001, Pages 670-674
The Lancet

Articles
Parents' accounts of obtaining a diagnosis of childhood cancer

https://doi.org/10.1016/S0140-6736(00)04130-1Get rights and content

Summary

Background

Quick diagnosis and treatment of cancers is a UK government priority. However, the process of arriving at a diagnosis of childhood cancer has been neglected in comparison with the attention given to cancers in adults. We investigated parents' narratives about the period before their child's diagnosis.

Methods

We undertook semistructured interviews with 20 parents whose children (aged 4–18 years) had a confirmed diagnosis of cancer or brain tumour. All interviews were recorded and fully transcribed. Dates of consultations and investigations were noted from children's medical records. Data were analysed by the constant comparison method.

Findings

The time before diagnosis is very significant for parents and might affect their adaptation and reaction to their child's diagnosis. Parents were first alerted to their child's illness by a range of signs and symptoms, and by behavioural and affective changes. These early symptoms were often vague, non-specific, and common, and some older children were reluctant to disclose symptoms. Ten families' accounts of this period before diagnosis included a dispute with doctors. Disagreements between parents and doctors about the seriousness of children's symptoms and the need for investigations occurred in both primary and secondary care. Some parents felt that doctors discounted their special knowledge of their child.

Interpretation

Parents' accounts offer valuable insights into their experiences of obtaining a diagnosis of childhood cancer and into possible sources of delays in this complex process. If delays are to be avoided or reduced, attention must be given to the different roles of parents, children, general practitioners, hospital specialists, and type of cancer. Our findings have important implications for policy, practice, and research, and for the management of childhood illnesses.

Introduction

The UK government has made a commitment to addressing delay in cancer diagnosis and improvement of public awareness and rapid referral of patients with signs and symptoms suggestive of cancer.1 Children in whom cancer is suspected by their general practitioner (GP) can expect to be seen within 2 weeks by a cancer specialist, but clearly the success of this strategy depends on children presenting with symptoms and on doctors recognizing those symptoms as being suggestive of cancer. Much research exists on factors that cause delays in patients' presentation to health services and clinician diagnoses for many cancers in adults.2, 3 Childhood cancers receive less attention than those of adults4, 5 despite recent suggestions that early detection of childhood cancer could reduce mortality.6 This lack of attention might be partly attributable to the low importance of children's health issues in government policy and research,7, 8 coupled with the rarity of childhood cancer. Nevertheless, when childhood cancer happens, its effects are devastating, and survivors and their families face a lifetime of coping with its aftermath. It is important that parents' experiences of the time before diagnosis are understood.

We examined parents' narratives about the diagnosis of childhood cancer, with the aim of determining how parents felt about the process, how the process affected them, and whether these narratives had implications for early diagnosis and referral of childhood cancers.

Section snippets

Study design

Over 7 months we undertook semistructured interviews with one or both parents of a child with cancer. This type of interview is an effective method for investigation of parents' experiences of seeking help.9 We also examined children's medical records to attempt to corroborate parents' accounts and to obtain more precise details of dates, referrals, and investigations. We obtained research ethics committee approval for the project. MF, who did not help to care for any of the children, did the

Participants

Purposeful sampling is an accepted method in qualitative research and does not aim for statistical representativeness.10 We included parents of children who had a confirmed diagnosis of leukaemia, malignant solid tumour, or brain tumour. The children were aged between 4 and 18 years and were either receiving treatment or had completed treatment in the previous 4 months at a paediatric oncology unit. To avoid distressing parents or introducing bias by interviewing them when their child was in a

Analysis

We did the interviews and analysed the transcripts concurrently, to meet the conditions of the constant comparison method.11 We indexed transcripts until patterns were identified, which we adopted as the main themes for further analysis. Themes were refined, refocused, or altered as new transcripts were analysed. We continued sampling to achieve theoretical saturation—ie when additional interviews add nothing to what is already known about the properties of categories and themes of the analysis.

Results

Only one family approached refused to be interviewed. We achieved theoretical saturation by the 14th interview; thereafter, every new statement could be fitted into existing themes without amendment—later interviews confirmed this analysis. Children had been diagnosed roughly 1–36 months before interview (median 11 months). Nine had leukaemia, two had brain tumours, and the remainder had solid tumours. Three children have died since the study was completed. Four families were of South-Asian

Discussion

Our study shows that obtaining a diagnosis of childhood cancer might be more complex than workers have previously reported, and that attention needs to be given to the roles of parents, children, GPs, hospital specialists, and type of cancer in this process. Clearly, the time before diagnosis remains enormously important for parents, irrespective of the length of time since diagnosis. In this period parents' view of themselves changes from normal parent to parent of a child in crisis. Parents'

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    Although the prognosis has improved substantially owing to therapeutic progress, childhood cancer remains the leading cause of disease-related mortality among those aged 1–14 years.1,2 Early diagnosis is associated with better prognosis, reduced burden of therapy, fewer disease-related and treatment-related complications, and a reduction in distress to children and their families.1,3 However, timely detection can be challenging as presenting manifestations might mimic those of different disorders.

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