Research report
Information and communication when a parent has advanced cancer

https://doi.org/10.1016/j.jad.2008.06.022Get rights and content

Abstract

Background

Children whose parents are diagnosed with advanced cancer are found to experience high levels of distress. Research has reported communication and information as some of the factors that may contribute to levels of distress in children. There is little research however, regarding what type of information and what level of communication children consider important.

Aims

This study explored children's information needs and where and how or by whom they wanted to gain the information when a parent is diagnosed with advanced cancer. This was done in order to identify any unmet needs as well as to identify barriers that may exist in children accessing knowledge.

Method

Semi-structured interviews were conducted with ill (advanced cancer) and well parents and/or any children above the age of 7. Interviews were recorded and transcribed fully, and analysed using a constructionist grounded theory approach.

Results

Twenty eight family participants were interviewed. Children described wanting honest information about parents health and treatment. Girls expressed a particular need for information regarding implications for their own health and possible future tests. Children described wanting information from a variety of sources including parents, health professionals, books, leaflets, and the internet. They expressed a need to have access to somebody who understood and who would keep their conversation confidential. Problems described in relation to accessing the desired amount of information and communication included not wanting to upset parents by asking them, not having access to professionals, and age inappropriate information. Parents identified informing children of their diagnosis and children's questions and concerns as their main challenge.

Discussion

The study suggests that improving communication within and outside of the family system will be beneficial to children whose parents have been diagnosed with advanced cancer. It suggests that such an improvement will increase support available to children and will impact on how children are able to cope with their situation.

Section snippets

Background

A diagnosis of advanced cancer in a parent with dependent children has an enormous impact on the structure and functioning of the family unit (Segal and Simkins, 1993). Studies that have looked at children's issues, describe children whose parents have cancer to be at risk of psychological distress (Compas et al., 1994, Compas et al., 1996, Grant and Compas, 1995, Pfeffer et al., 2000, Visser et al., 2004). Furthermore there is evidence that the terminal phase of a parent's illness may be a

Methods

Families were recruited via a Cancer Centre, two hospices, 5 GP practices, and a Gynaecological oncology team. Health professionals identified persons with advanced cancer who also had dependent children and gave written information about the study. Those interested in participating provided the researcher with their contact details. Other members of the family such as the well parent and children were referred and/or introduced to the researcher by the ill parent once contact was established.

Demographics

This study included 28 participants from 12 families (7 families including children being interviewed) compromising of 10 ill parents, 7 main carers, and 11 children. The mean time from diagnosis of advanced cancer to the date of the interview was 12.4 months (range 2 months to 28 months) with a median time of 6.5 months.

Information and communication were aspects of children's experiences were described as important. The level of information gained and required depended on the level of

Children's perspectives

Four themes were identified including the need and type of information, sources of information, communication with parents, and communication with others.

Desire for information

Although not all children were fully informed regarding their ill parent's exact diagnosis and/or prognosis, all children interviewed wanted to know what was going on so that they could be prepared for the future, and felt included in the family's situation.

quite emotional, quite sad, at the thought of your mum being quite ill, ehm….. quite hard to come to terms with it at first but, but once, once you thought about it a little and you know what's happening, you know what the next couple of

Extent of information desired

In addition to information regarding the diagnosis and/or prognosis children described wanting information about how best to help their parents, about the treatment and tests they were receiving, length of hospital stays, and their own health. Girls in particular wanted to know whether they would be tested for cancer and if so when and what kind of tests they would receive.

I know I've got to have a screening when I'm 35 I think it is, to know or every couple I don't know if it's every year or

Type of information

Many sources of information were described, including parents, health professionals, books, leaflets, internet, and the media. Parents were described as the primary source of information, particularly with regards to the type of illness and severity, however there were some concerns that parents may be withholding or simplifying information. Although most children felt that they could ask questions of their parents, they were concerned that they might upset their parents by asking, creating a

Communication with parents

Most children reported wanting to communicate with their parents, but the degree of openness between children and parents varied between individuals. The most common reasons given by children for not communicating with parents, particularly about how they were feeling, included not wanting to upset their parents, or not knowing how to go about it.

I wanted to talk to mum about it but I didn't really know how, ehm I didn't know if it would make her upset if I talked to her about it or not, I

Communication with others

Communication with others included friends, siblings, general acquaintances, teachers and health professionals. Having somebody (who understands) to talk to was described as a very important and helpful aspect.

Communication with people outside of the family tended to be described as difficult. Other people's uneasiness and insensitivity in receiving such news was highlighted by the children. Although many expressed a desire to talk to someone outside the family (e.g. health professional), not

Parent's perspective

For parents when it came to giving information and communicating with their children about the illness two main themes were identified. These included ‘telling the children’ and ‘children's questions’.

Telling children about advanced cancer

The most difficult and apparent issue for parents with respect to children included ‘telling the children’. Making the decision of if, how, and when to tell their children was difficult for parents. Reasons for telling children included not wanting secrets, to prepare the child for the future and to involve children. Parents also felt it would help children deal with eventual bereavement.

but I think at the end of the day you know there is a big debate here about how you tell children and

Questions and concerns

Ill parents described children as having questions about death, as well as about treatment, tests and side effects. Questions regarding death were particularly difficult. Children were reported to direct questions to mothers more often than fathers, irrespective of which was the ill parent. Parents whose children had access to formal support (e.g. specialist nurse) felt reassured knowing that their child had somebody to talk to.

one of the Macmillan nurse is coming.., and the kids do tend to

Discussion

This study demonstrates that information is important for children when a parent has advanced cancer. Variability and individuality of information needs have been highlighted. Communication was described as a crucial theme. However achieving open communication and accessing information within the family is difficult and associated with barriers such as children not wanting to distress their parents and vice-versa.

Similar protective barriers to communication described by children are also by

Conclusions

Results from this study have highlighted the needs and problems children and parents experience in communicating and receiving/giving information when a parent has advanced cancer. Limitations include parental referral which resulted in a sample of children who did have some knowledge regarding their parent's illness. Learning about children's information and communication needs is important in providing effective and appropriate services when a parent has advanced cancer.

Role of funding source

Funding for this study was provided by the Clara E Burges Trust; the trust had no further role in study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the paper for publication.

Conflict of interest

There is no conflict of interest.

Acknowledgements

We wish to gratefully acknowledge the families who participated in this study and who gave their time to share their experiences. We also wish to thank members of the Academic Palliative and Supportive Care Studies Group at the University of Liverpool for their comments on earlier drafts of this paper. We also wish to acknowledge the Clara Burgess Trust who funded this study.

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