Papers

Qualitative interview study of communication between parents and children about maternal breast cancer

Jacqueline Barnes, senior lecturer in psychology ^a, Leanda Kroll, senior registrar in child psychiatry ^b, Olive Burke, senior registrar in child psychiatry ^b, Joanna Lee, psychiatric social worker ^c, Alison Jones, consultant medical oncologist ^c, Alan Stein, professor ^a. 

^a Leopold Muller Centre for Child and Family Mental Health, Department of Paediatrics and Child Health, Royal Free and University College Medical School, London NW3 2PF, ^b Tavistock and Portman NHS Trust, London NW3 5BA, ^c Royal Free Hampstead NHS Trust, London NW3 2QG

Correspondence to: J Barnes j.barnes{at}rfc.ucl.ac.uk

	Abstract

Top Abstract Introduction Methods Results Discussion References

Objective: To examine parents' communication with their children about the diagnosis and initial treatment of breast cancer in the mother.
Design: Qualitative interview study within cross sectional cohort.
Setting: Two breast cancer treatment centres.
Participants: 32 women with stage I or stage II breast cancer with a total of 56 school aged children.
Main outcome measures: Semistructured interview regarding timing and extent of communication with children about the diagnosis and initial treatment of the mother's illness, reasons for talking to children or withholding information, and help available and requested from health professionals.
Results: Women were most likely to begin talking to their children after their diagnosis had been confirmed by biopsy, but a minority waited until after surgery or said nothing at all. Family discussion did not necessarily include mention of cancer. There was considerable consistency in the reasons given for either discussing or not discussing the diagnosis. The most common reason for not communicating was avoidance of children's questions and particularly those about death. While most mothers experienced helpful discussion with a doctor concerning their illness, few were offered help with talking to children; many would have liked help, particularly the opportunity for both parents to talk to a health professional with experience in understanding and talking to children.
Conclusions: Parents diagnosed with cancer or other serious illnesses should be offered help to think about whether, what, and how to tell their children and about what children can understand, especially as they may well be struggling themselves to come to terms with their illness.

	Introduction

Top Abstract Introduction Methods Results Discussion References

In the past 10 years there has been increased acknowledgement of the importance of doctors' communication with patients concerning the diagnosis of cancer. A recent editorial in the BMJ highlighted the difficulties many doctors have in communicating such news.¹ If it is difficult for doctors, however, it is likely to be even more difficult for parents with newly diagnosed cancer to tell their children, while at the same time dealing with their own feelings and coming to terms with the implications themselves.²

There is evidence that good doctor-patient communication about the diagnosis and shared decision making over treatment is important and has a protective effect on patients' psychological adjustment.³ Little attention, however, has been paid to whether, what, and how children should be told about their parent's diagnosis. This responsibility has been left largely to parents unaided.

The little research that has been conducted on this issue suggests that when children are told of the diagnosis their anxiety levels are lower and communication within the family is improved,⁴ although factors such as the child's age have not been studied in detail. In addition, a large study in the United States has shown that in families where a mother has cancer, parents are often not aware of the extent of psychological symptomatology and distress of their children.⁵ No study to date has examined the timing, nature, and extent of communication between parents with cancer and their children or studied why parents do or do not talk to their children about such difficult and important issues or inquired about what help parents have received or might have liked.

The relative frequency of life threatening illness in general among parents makes the issue of communication with their children an important public health matter. Breast cancer affects one in 12 women in the United Kingdom, about 30% of whom are likely to be diagnosed while they have children of school age living at home.⁶ Therefore families in which a mother has recently been diagnosed as having breast cancer are a particularly important group for study of the communication of the diagnosis to the children. We examined the nature of such communication, established whether parents were given any support or advice concerning the communication, and identified what support or guidance they might have wanted.

	Methods

Top Abstract Introduction Methods Results Discussion References

Recruitment
A consecutive series of women was approached at two breast cancer treatment clinics in north London hospitals over about 18 months. Those with stage I or stage II breast cancer (about 80% of cases) and who had at least one child aged between 5 and 18 years were approached by the breast surgeon or oncology consultant in outpatient clinics between four and six months after diagnosis. The women were given information and a consent form and, if interested, they contacted the research team. Approval was obtained from two local research ethics committees. Full informed consent was obtained, and it was explained that participation would not influence their ongoing medical care.

Outcome measures
A semistructured interview incorporated certain questions from established instruments ^{7 8} and was designed for this study to elicit both quantitative and qualitative information. Only the qualitative information is presented in this paper. The interview covered sociodemographic data followed by a combination of structured (yes/no) and open ended questions about the history of illness and treatment, communication with children and other family members and friends at specific times during the illness, children's understanding of the illness and treatment, and any emotional or behavioural problems in the children. Mothers were asked about their children's questions, reactions, and concerns. While the interviewer had a number of topics to cover, interviews were conducted in a manner that was sensitive to the interviewee and her narrative, allowing for prompts and exploration of topics raised spontaneously, to enhance the qualitative information elicited.⁹ All interviews were tape recorded and transcribed.

	Results

Top Abstract Introduction Methods Results Discussion References

Timing of disclosure to children
While nearly all women interviewed had talked to their partners from the early stages (22/29 at discovery of the lump; 20/26 at visit to the general practitioner; 28/29 at outpatient appointment), few women told their children at that time. For mothers who decided to share information about their illness, children were usually told at the time of diagnosis (39/56), but there was considerable variability in the extent to which children were told about the nature and possible consequences of the illness. At the stage of surgery 44 children had been told that their mother was ill but only 32 that her illness was cancer.

Reasons for disclosure or non-disclosure
The qualitative analysis was designed to explore mothers' decisions about making disclosures regarding their illness. There was considerable consistency in the reasons given for either discussing or not discussing the diagnosis with their children. The most common reason for avoiding discussion was to avoid facing children's questions and in particular those concerned with death. Mothers also talked about protecting their children by preventing anxiety and distress, which they expected to come from children's knowledge of their illness. Discussion was also avoided because children's understanding of the illness was not expected or to preserve special family occasions such as holidays. Those mothers who had communicated in detail with their children at an early stage in their illness, and often with details of the nature of cancer, said they thought children had a right to know. They also said that they wanted to keep their children's trust and to promote discussion in the family, which they hoped would alleviate children's anxieties about their changed appearance or the possibility of death.

Ways to help parents think about communication with their children
Mothers were asked whether they had been offered any help with talking to their children from a list of possible services and supports. While mothers had received careful discussion concerning the diagnosis and treatment of their illness, only a minority had been offered any kind of help with regard to communicating the information to their children, thinking about their children's reactions, or about the issues surrounding talking to children about serious illness. Many would have liked a meeting as parents, or as a whole family, with a health professional, preferably in their own home. Specifically they would have liked advice on ways to break news to their children based on detailed knowledge of child development. They also thought their children might benefit from talking directly to a healthcare professional, such as a nurse or the surgeon.

	Discussion

Top Abstract Introduction Methods Results Discussion References

Children are keen observers of their environment, and studies of family disruptions such as divorce have shown that they construct meaning for themselves, even blaming themselves for the ensuing changes.¹¹ Women faced with a potentially life threatening illness may decide not to talk to their children about their condition. Our study has shown that some are reluctant to reveal their illness even after surgery. The results suggest that in general parents avoid communication with their children as a means of filtering information in the hope of controlling or minimising the children's difficulties.

There was a striking consistency in the spontaneous comments from mothers about why they did, or did not, discuss their illness. In many cases parents hoped to reduce the distress for their children and for themselves, and in particular they wanted to avoid mention of death. In addition, the extent of discussions was influenced by parents being unclear what children could understand, how they would react, and how to cope and respond when questions were asked.

It is now known that children have more potential to understand complex concepts of illness than many professionals had previously appreciated.¹² Even if children are not told of the illness they soon become aware of changes in atmosphere at home and in their parent's health. Parents receiving a diagnosis of cancer need to be offered support and acknowledgement that they are part of a family unit, all the members of which are likely to be profoundly influenced by the illness and its treatment. Many parents need help to think about how they might talk to their children about the diagnosis and changes in family life. They are likely to benefit from discussion even if they decide not to communicate any details to their children. Such advice should take into account children's ages, the family's own communication style, and the parent's feelings about his or her illness and capacity to cope with the children's feelings and reactions.

More research is needed to investigate the best means of providing support and the consequences for the parents and children of more or less communication. Knowledge of ways that families respond to illness should have implications for undergraduate and postgraduate medical and nursing training and will have applications in other situations of loss and distress, such as coping with chronic physical illness in a parent or severe injuries resulting from road traffic accidents.

	Acknowledgments

We are grateful to all the families who participated for taking time to talk about their experiences. Thanks to Lisa Brackenridge and Bernice Slagel for transcribing the tape recordings and to Rebecca Lindsey-Asher for help with the data entry. We also thank Alan Wilson, who gave information about the project to potential participants.

This work was undertaken by the Royal Free Hampstead NHS Trust, which received a proportion of its funding from the NHS Executive; the views expressed in this publication are those of the authors and not necessarily those of the NHS Executive.

Contributors: AS had the original idea for the study, was principal investigator, and is guarantor for this paper. AS, JB, LK, and OB designed the protocol and together with AJ obtained funding. AS, LK, OB, JB, and JL interviewed the participants. JL and LK performed the qualitative analysis under JB's supervision, and JB conducted the statistical analysis. All authors discussed the main issues, interpreted the data, and edited the draft.

	Footnotes

Funding: Royal Free Peter Samuel Fund.

Competing interests: None declared.

	References

Top Abstract Introduction Methods Results Discussion References

1.	Buckman R. Talking to patients about cancer. No excuse now for not doing it. BMJ 1996; 313: 699-700[Free Full Text].
2.	Kroll L, Barnes J, Jones A, Stein A. Cancer in parents: communicating the diagnosis to children. BMJ 1998; 316: 880[Free Full Text].
3.	Fallowfield LJ, Hall A, Maguire P, Baum M, A'Hern RP. Psychological effects of being offered choice of surgery for breast cancer. BMJ 1994; 309: 448[Free Full Text].
4.	Nelson E, Sloper P, Charlton A, While D. Children who have a parent with cancer. A pilot study. J Cancer Educ 1994; 9: 30-36[Medline].
5.	Welch AS, Wadsworth ME, Compas BE. Adjustment of children and adolescents to parental cancer. Cancer 1996; 77: 1409-1418[CrossRef][Medline].
6.	Cancer Research Campaign. Fact sheet 6. London: Cancer Research Campaign, 1996.
7.	Lichtman RR, Taylor SE, Wood JV, Bluming AZ, Dosik GM, Leibowitz RL. Relations with children after breast cancer. The mother-daughter relationship at risk. J Psychosocial Oncol 1984; 2: 1-19.
8.	Woolley H, Stein A, Forrest GC, Baum JD. Imparting the diagnosis of life-threatening illness in children. BMJ 1989; 298: 1623-1626.
9.	Britten N. Qualitative interviews in medical research. BMJ 1995; 311: 251-253[Free Full Text].
10.	Banister P, Burman E, Parker I, Taylor M, Tindall C. Qualitative methods in psychology: a research guide. Buckingham: Open University Press, 1994.
11.	Hetherington EM, Stanley-Hagan M. The adjustment of children with divorced parents: a risk and resiliency perspective. J Child Psychol Psychiatry 1999; 40: 129-140[CrossRef][Medline].
12.	Rushforth H. Communicating with hospitalised children: review and application of research pertaining to children's understanding of health and illness. J Child Psychol Psychiatry 1999; 40: 683-691[CrossRef][Medline].

(Accepted 12 May 2000)