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Information and communication when a parent has advanced cancer
Journal of Affective Disorders 114 (2009) 149 – 155 www.elsevier.com/locate/jad
Research report
Information and communication when a parent has advanced cancer Vida L. Kennedy, Mari Lloyd-Williams ⁎ Academic Palliative and Supportive Care Studies Group, School of Population, Community and Behaviour, Whelan Building, University of Liverpool, Liverpool, L69 3GB, United Kingdom Received 30 April 2008; received in revised form 27 June 2008; accepted 28 June 2008 Available online 5 August 2008
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. © 2008 Elsevier B.V. All rights reserved. Keywords: Advanced cancer; Children; Information; Communication; Palliative care
1. 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 ⁎ Corresponding author. E-mail address: [email protected] (V.L. Kennedy, M. Lloyd-Williams). 0165-0327/$ - see front matter © 2008 Elsevier B.V. All rights reserved. doi:10.1016/j.jad.2008.06.022
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, 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 period of greater psychological vulnerability than the period following the loss (Siegel et al., 1996).
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Studies have related quality of communication and whether children have been told about the illness to children's levels of anxiety (Kroll et al., 1998; Nelson et al., 1994; Rosenfeld et al., 1983; Rosenheim and Reicher, 1985; Watson et al., 2006). This has also been demonstrated when the illness is terminal (Beale et al., 2004). Although studies have shown that communication between parent and child may help reduce the anxiety experienced by children, they have also shown that many children are not told when a parent may be facing death due to illness (Barnes et al., 2000). Reasons for lack of communication include parents not aware of the fact that their children are experiencing distress, fears of breaking down in front of children, guilt about not being able to fulfil their parenting role, grief over lost opportunity to see their child grow up and not wanting to distress their child (Cohen et al., 1977; Rosenheim and Reicher, 1985; Silverman and Silverman, 1979; Welch et al., 1996). Additionally parents find it difficult to be honest about the threat of cancer and the uncertain nature of the illness (Patenaude, 2000). More recently Barnes et al. (2002) added that the age of a child predicted communication about cancer between mothers and their children. Older children were more likely to be told earlier and given information. In support of this Cohen et al. (1977) found that about 50% of the children under 8 only found out that their parents were going to die in the terminal phase. Shands et al. (2000) interviewed 19 mothers newly diagnosed with breast cancer and described three categories of interactions which included ‘talking about the breast cancer’, ‘providing experiences’, and ‘doing things to help children cope’. Mothers were described as taking a more educative approach than an emotive approach to talking about the breast cancer. Krisjanson et al. (2004) found that adolescents identified parents (predominantly), support groups, physicians, school and media as their main sources of information and emphasised the need for information to be specific and to be given as the illness progressed. Important information included whether mothers were going to survive, the seriousness of illness, side effects of treatment, medical facts related to illness, and information on how to help their mothers. Adolescents in this study considered much of their informational needs to be unmet. Forrest et al. (2006) have also highlighted the need of information by children whose mothers have been diagnosed with cancer, stressing the importance of age appropriate information and the use of websites and media as a source of information. The sharing of information however may be more important than the actual content (Northouse and Swain,
1987). These studies have contributed to the study of communication and information when a parent has cancer, but have focused on mothers with breast cancer and/or non-terminal cancer and little is known about the nature of communication and informational needs of children whose parents have advanced cancer, or where fathers have advanced cancer. The aim of this study is to identify communication and information needs of children where a parent has advanced cancer. 2. 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. Some participants called the researcher directly having heard about the study in media. All interviews took place within the family home. Semi-structured interviews, using a topic based interview schedule, were conducted with written consent with all participants. Due to the simultaneous nature of data collection and analysis, findings and/or topics raised in previous interviews were built into the interview schedule in following interviews, in a ‘feed forward’ process. When parents gave permission for children to be interviewed, the children were provided with information verbally and an information sheet. Children were given plenty of time to chat informally to the researcher as well as to ask questions and discuss with family members prior to deciding if they wanted to participate. The child's right to withdraw was emphasised at multiple occasions. Parents were asked for verbal permission and children gave their individual consent (Coyne, 1998). Interviews were scheduled for a mutually convenient time and place for all. Children were given the choice about whether to be interviewed alone or with parents/ sibling. In addition to interviews, the write–draw technique, described by Oakley et al. (1995), was used if there were particular difficulties in gaining access to children's accounts. Furthermore the study was guided in it's approach to interviewing children by Alderson and Morrow (2004) and Coyne (1998). All interviews were tape-recorded and transcribed verbatim by (VK). For anonymity each participant was given a pseudonym. Interview data was analysed
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about it a little and you know what's happening, you know what the next couple of years are going to be like, and you sort of get into a routine of the treatments and things like that, it's ok…(Nia,17)
according to the key principles of constructionist grounded theory as described by Charmaz (1995). Coding and theme development were continuously revised by returning to the data and repeated visits to the field, in accordance with the constant comparison methods of grounded theory. VK was responsible for the primary analysis of the data but all transcripts were read by MLW. Emerging themes and selected transcripts were also discussed with three other experts in the field where independent coding of transcripts were compared and consistency of analysis to raw data was discussed. NVivo version 2.0 was used to assist with analysis. Full ethical approval was sought and obtained for this study and local clinical governance procedures were adhered to.
All children expressed a need for information regarding parent's illness. This suggested a crucial link between information and communication, making it very difficult to separate these two concepts. Some described wanting total honesty, whilst others expressed a need for their parents to filter or soften the information according to what they felt able to deal with. In some cases a conflict was described where the importance and need for complete honesty were stated, but the child wanted reassurance that everything would be alright.
3. Results
6. Extent of information desired
3.1. Demographics
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.
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 communication. Here ‘communication’ refers predominantly to the process of giving and receiving information, where ‘information’ refers mostly to the knowledge acquired. 4. Children's perspectives Four themes were identified including the need and type of information, sources of information, communication with parents, and communication with others. 5. 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
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 something I cant remember but it's quite scary that one day I could get cancer and I think genetically cos if dad got it and his mum had it some of his relatives might have it there is a very strong genetic link so it's like its weird to think that I might have it or L [sister] might have it or C [sister] might have it) (Jane,18) The need for information varied with different stages of the disease. The initial stages after diagnosis was a time described as needing the most information, particularly with regards to the disease itself, treatments and tests. At later stages there was more need for information regarding how to help their parents. 7. 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
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that they could ask questions of their parents, they were concerned that they might upset their parents by asking, creating a barrier to information. It is where children felt a lack of information that they described a need for it or wanting to seek it elsewhere. Children generally perceived those with a medical background (such as doctors and nurses) to be valuable sources of information. “probably like a nurse or a doctor, I don't know because I don't like talking to mum about it, and I don't really, dad doesn't really talk about anyway because he's not, mum and dad have been divorced for ages, but probably someone not in the family, talking about it might just might be better..(Olwen,15) Health professionals were directly identified as a valuable source of information particularly where children were seeking confidentiality and objectivity. Problems described by children related to gaining information from health professionals included lack of access, as well as age inappropriate ways of talking with and explaining things to children, again highlighting the important role of communication. ..so it's like ‘I don't need a picture book, I know what you're doing, I understand just like speak to me normally like I'm not retarded’ I hate that why do they speak to children like they're retarded? no need no need (Rebecca,18) Being able to receive information from parents or health professionals did not exclude seeking information independently. Other sources of available information included books, leaflets, internet, and media. In addition, although the internet was recognised as an important source of information, it was also described as ‘scary’ as it might be unspecific or outdated. Some websites were identified as more helpful than others and it was suggested that it may be helpful to be directed to these specifically. Other aspects of the internet that were identified included chat rooms/forums. These were described in a supportive light, because they provided access to other children going through similar situations, as well as maintaining a degree of anonymity. I go on google then I go onto the cancer page and then I go into ‘you find’ and I look for Macmillan nurses and stuff (Fiona,10) The media (particularly television advertisements for cancer charities) was described as portraying a negative view of cancer and associating it with death. Some forms of media however, such as magazines, were described as including helpful and inspiring stories.
8. 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 didn't know if she wanted me to talk to her about it, so I kind of just waited until she brought it up again, and then talk to her about it then…(Nia,17) Such inability or opportunity to communicate with their parents about their feelings may explain why many children expressed the need for someone outside the family to talk to. Communication was described as taking place more often with the mother (whether she is the ill parent or not), suggesting a more accessible relationship with the female parent. 9. 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 many were given the opportunity to do so. Where it was described most considered it valuable, even when conversation was not directly/obviously related to ill parent. well ehm I haven't had I haven't really spoken to anybody really about the, that's one of the things that I would like to do, ask questions and things really, because I'd like to get some of my answers off somebody other than my mum… a doctor or professional (Bethan,12) 10. Parent's perspective For parents when it came to giving information and communicating with their children about the illness
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two main themes were identified. These included ‘telling the children’ and ‘children's questions’. 11. 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 whether you tell them at all.. yeah it was quite hard .. but I don't believe in having any secrets certainly.. they need to know the truth because they have, there are problems that they are going to have to deal with.. (Wendy, Ill parent,43) Reasons parents gave for not telling children included not wanting to upset the children, not being the right time, not wanting to ‘steal their childhood’ and not knowing how to go about telling a child. Protecting the children therefore was an important reasoning/explanation for not telling the children. A factor that made honesty difficult was the uncertainty parents had about what to expect, as well as the age of the child. Ill parents felt it was more difficult to tell younger children or children with learning difficulties about parent's illness, as they did not know if they would be able to comprehend. Children's understanding was perceived by parents to be increased by the existence of physical symptoms, and parents felt that if things appeared normal then children wouldn't pick up on what's going on. Difficulties, however, were not restricted to younger children. Older children were described as being more likely to go seek out information elsewhere, such as from the internet, which might cause them distress if they came across some disturbing facts. because they're very clever, I mean R particularly ehm was going on the internet a lot, finding out answers to her questions about cancer and she became very angry, ehm, because she, she had taken what I'd said and then got on the internet and had just got any information, …I thought when she went on the internet she was doing her course work, I thought that she trusted my judgement and would just trust what I would say.. because she is a teenager (laughs), she's going to want to find out for herself and I, I was unprepared for that,. (Ivy, Well parent,44)
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All parents felt that how children were told was very important. Parents felt it would be helpful to receive recommendations about reliable websites that they could refer their children to. A few parents reported wanting others (health professionals, specialist nurse) to tell their children on their behalf. However all wanted control over what information their children were receiving. 12. 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 talk to her a lot - and she knows what questions to ask, cos when you're the parents they don't want to tell you do they?…(Dafydd, Well parent,31) Communication about the illness varied between families. Some chose to talk about it as much as they were able, while others preferred not to talk about it at all. The way parents chose to approach this aspect of communication with their children and family members largely reflected their own attitude to coping. Parents in denial and/or wanting to take a positive attitude chose not to talk about the illness and urged their children to do the same. 13. 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 parents, which suggest that parents and children have similar motives for limiting communication within the family. Although parents believe that they are the best person to tell the children and that ultimately the decision lies with them, both also describe a lack and/or need for support in ‘telling the children’. Communication was therefore
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considered important by all participants, but achieving this was considered challenging. Forrest et al. (2006) found that even young children had an awareness of cancer as a life threatening illness, and identified stories and reports in the media as important sources of information, which were sometimes misleading. Similar findings have been described in this study with regards to media, including television advertisements, internet, and magazines. The variability in information needs of children as described by this study is also supported by others (Forrest et al., 2006; Miller, 1987), suggesting that communication rather than information may be the crucial factor. As described previously, we have learnt from the literature (Houldin and Lewis, 2006; Hilton and Elfert, 1996; Walsh et al., 2005) that parents create barriers to communication by withholding information for fear of distressing their children, and the uncertainty they feel themselves regarding the future (Billhult and Segesten, 2003). Children also impede communication by not sharing needs and feelings with parents for fear of distressing the parents, a finding also reported by others (Heiney et al., 1997). Eiser and Havermans (1992) state that children can become “highly competent in shielding their knowledge from parents, who assume that silence indicates nonawareness or lack of interest”. Much of the current literature has been related to factual information about illness (Eiser and Havermans, 1992). Our study stresses that communication involves more than the giving of factual information, and includes aspects such as support and feelings of involvement. Huizinga et al. (2003) reported that children in their study found it easier to talk about the parents' illness with friends and other family members as they were fully informed. We take this further by suggesting that increasing the availability of information and communication within and outside the family, children may have better access to support and coping strategies. In addition our study implies that children are more able to communicate with their mother regardless of which parent has advanced cancer. Such suggestions would support previous reports that mothers are generally the expressive leaders of the family (Cohen et al., 1977), however it raises questions as to the needs of children who come from single father families or when mothers who are ill become too ill to deal with the communication/information needs of children. Improvements in communication may be achieved by supporting parents to talk with their children and by making them aware that children may be hiding information and communicational needs. In addition providing both parents and children with age appropriate information including information about the
cancer, treatment, own health, and available support and other sources information (e.g. websites) is needed. Girls in particular need greater access to information regarding the genetic implications of cancer. Further work is needed, however, to develop appropriate information for children, in particular older children. Children should not only be considered when a parents illness becomes terminal (Beale et al., 2004), but should also be involved and considered from diagnosis. 14. 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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Research report
Information and communication when a parent has advanced cancer Vida L. Kennedy, Mari Lloyd-Williams ⁎ Academic Palliative and Supportive Care Studies Group, School of Population, Community and Behaviour, Whelan Building, University of Liverpool, Liverpool, L69 3GB, United Kingdom Received 30 April 2008; received in revised form 27 June 2008; accepted 28 June 2008 Available online 5 August 2008
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. © 2008 Elsevier B.V. All rights reserved. Keywords: Advanced cancer; Children; Information; Communication; Palliative care
1. 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 ⁎ Corresponding author. E-mail address: [email protected] (V.L. Kennedy, M. Lloyd-Williams). 0165-0327/$ - see front matter © 2008 Elsevier B.V. All rights reserved. doi:10.1016/j.jad.2008.06.022
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, 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 period of greater psychological vulnerability than the period following the loss (Siegel et al., 1996).
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Studies have related quality of communication and whether children have been told about the illness to children's levels of anxiety (Kroll et al., 1998; Nelson et al., 1994; Rosenfeld et al., 1983; Rosenheim and Reicher, 1985; Watson et al., 2006). This has also been demonstrated when the illness is terminal (Beale et al., 2004). Although studies have shown that communication between parent and child may help reduce the anxiety experienced by children, they have also shown that many children are not told when a parent may be facing death due to illness (Barnes et al., 2000). Reasons for lack of communication include parents not aware of the fact that their children are experiencing distress, fears of breaking down in front of children, guilt about not being able to fulfil their parenting role, grief over lost opportunity to see their child grow up and not wanting to distress their child (Cohen et al., 1977; Rosenheim and Reicher, 1985; Silverman and Silverman, 1979; Welch et al., 1996). Additionally parents find it difficult to be honest about the threat of cancer and the uncertain nature of the illness (Patenaude, 2000). More recently Barnes et al. (2002) added that the age of a child predicted communication about cancer between mothers and their children. Older children were more likely to be told earlier and given information. In support of this Cohen et al. (1977) found that about 50% of the children under 8 only found out that their parents were going to die in the terminal phase. Shands et al. (2000) interviewed 19 mothers newly diagnosed with breast cancer and described three categories of interactions which included ‘talking about the breast cancer’, ‘providing experiences’, and ‘doing things to help children cope’. Mothers were described as taking a more educative approach than an emotive approach to talking about the breast cancer. Krisjanson et al. (2004) found that adolescents identified parents (predominantly), support groups, physicians, school and media as their main sources of information and emphasised the need for information to be specific and to be given as the illness progressed. Important information included whether mothers were going to survive, the seriousness of illness, side effects of treatment, medical facts related to illness, and information on how to help their mothers. Adolescents in this study considered much of their informational needs to be unmet. Forrest et al. (2006) have also highlighted the need of information by children whose mothers have been diagnosed with cancer, stressing the importance of age appropriate information and the use of websites and media as a source of information. The sharing of information however may be more important than the actual content (Northouse and Swain,
1987). These studies have contributed to the study of communication and information when a parent has cancer, but have focused on mothers with breast cancer and/or non-terminal cancer and little is known about the nature of communication and informational needs of children whose parents have advanced cancer, or where fathers have advanced cancer. The aim of this study is to identify communication and information needs of children where a parent has advanced cancer. 2. 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. Some participants called the researcher directly having heard about the study in media. All interviews took place within the family home. Semi-structured interviews, using a topic based interview schedule, were conducted with written consent with all participants. Due to the simultaneous nature of data collection and analysis, findings and/or topics raised in previous interviews were built into the interview schedule in following interviews, in a ‘feed forward’ process. When parents gave permission for children to be interviewed, the children were provided with information verbally and an information sheet. Children were given plenty of time to chat informally to the researcher as well as to ask questions and discuss with family members prior to deciding if they wanted to participate. The child's right to withdraw was emphasised at multiple occasions. Parents were asked for verbal permission and children gave their individual consent (Coyne, 1998). Interviews were scheduled for a mutually convenient time and place for all. Children were given the choice about whether to be interviewed alone or with parents/ sibling. In addition to interviews, the write–draw technique, described by Oakley et al. (1995), was used if there were particular difficulties in gaining access to children's accounts. Furthermore the study was guided in it's approach to interviewing children by Alderson and Morrow (2004) and Coyne (1998). All interviews were tape-recorded and transcribed verbatim by (VK). For anonymity each participant was given a pseudonym. Interview data was analysed
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about it a little and you know what's happening, you know what the next couple of years are going to be like, and you sort of get into a routine of the treatments and things like that, it's ok…(Nia,17)
according to the key principles of constructionist grounded theory as described by Charmaz (1995). Coding and theme development were continuously revised by returning to the data and repeated visits to the field, in accordance with the constant comparison methods of grounded theory. VK was responsible for the primary analysis of the data but all transcripts were read by MLW. Emerging themes and selected transcripts were also discussed with three other experts in the field where independent coding of transcripts were compared and consistency of analysis to raw data was discussed. NVivo version 2.0 was used to assist with analysis. Full ethical approval was sought and obtained for this study and local clinical governance procedures were adhered to.
All children expressed a need for information regarding parent's illness. This suggested a crucial link between information and communication, making it very difficult to separate these two concepts. Some described wanting total honesty, whilst others expressed a need for their parents to filter or soften the information according to what they felt able to deal with. In some cases a conflict was described where the importance and need for complete honesty were stated, but the child wanted reassurance that everything would be alright.
3. Results
6. Extent of information desired
3.1. Demographics
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.
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 communication. Here ‘communication’ refers predominantly to the process of giving and receiving information, where ‘information’ refers mostly to the knowledge acquired. 4. Children's perspectives Four themes were identified including the need and type of information, sources of information, communication with parents, and communication with others. 5. 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
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 something I cant remember but it's quite scary that one day I could get cancer and I think genetically cos if dad got it and his mum had it some of his relatives might have it there is a very strong genetic link so it's like its weird to think that I might have it or L [sister] might have it or C [sister] might have it) (Jane,18) The need for information varied with different stages of the disease. The initial stages after diagnosis was a time described as needing the most information, particularly with regards to the disease itself, treatments and tests. At later stages there was more need for information regarding how to help their parents. 7. 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
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that they could ask questions of their parents, they were concerned that they might upset their parents by asking, creating a barrier to information. It is where children felt a lack of information that they described a need for it or wanting to seek it elsewhere. Children generally perceived those with a medical background (such as doctors and nurses) to be valuable sources of information. “probably like a nurse or a doctor, I don't know because I don't like talking to mum about it, and I don't really, dad doesn't really talk about anyway because he's not, mum and dad have been divorced for ages, but probably someone not in the family, talking about it might just might be better..(Olwen,15) Health professionals were directly identified as a valuable source of information particularly where children were seeking confidentiality and objectivity. Problems described by children related to gaining information from health professionals included lack of access, as well as age inappropriate ways of talking with and explaining things to children, again highlighting the important role of communication. ..so it's like ‘I don't need a picture book, I know what you're doing, I understand just like speak to me normally like I'm not retarded’ I hate that why do they speak to children like they're retarded? no need no need (Rebecca,18) Being able to receive information from parents or health professionals did not exclude seeking information independently. Other sources of available information included books, leaflets, internet, and media. In addition, although the internet was recognised as an important source of information, it was also described as ‘scary’ as it might be unspecific or outdated. Some websites were identified as more helpful than others and it was suggested that it may be helpful to be directed to these specifically. Other aspects of the internet that were identified included chat rooms/forums. These were described in a supportive light, because they provided access to other children going through similar situations, as well as maintaining a degree of anonymity. I go on google then I go onto the cancer page and then I go into ‘you find’ and I look for Macmillan nurses and stuff (Fiona,10) The media (particularly television advertisements for cancer charities) was described as portraying a negative view of cancer and associating it with death. Some forms of media however, such as magazines, were described as including helpful and inspiring stories.
8. 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 didn't know if she wanted me to talk to her about it, so I kind of just waited until she brought it up again, and then talk to her about it then…(Nia,17) Such inability or opportunity to communicate with their parents about their feelings may explain why many children expressed the need for someone outside the family to talk to. Communication was described as taking place more often with the mother (whether she is the ill parent or not), suggesting a more accessible relationship with the female parent. 9. 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 many were given the opportunity to do so. Where it was described most considered it valuable, even when conversation was not directly/obviously related to ill parent. well ehm I haven't had I haven't really spoken to anybody really about the, that's one of the things that I would like to do, ask questions and things really, because I'd like to get some of my answers off somebody other than my mum… a doctor or professional (Bethan,12) 10. Parent's perspective For parents when it came to giving information and communicating with their children about the illness
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two main themes were identified. These included ‘telling the children’ and ‘children's questions’. 11. 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 whether you tell them at all.. yeah it was quite hard .. but I don't believe in having any secrets certainly.. they need to know the truth because they have, there are problems that they are going to have to deal with.. (Wendy, Ill parent,43) Reasons parents gave for not telling children included not wanting to upset the children, not being the right time, not wanting to ‘steal their childhood’ and not knowing how to go about telling a child. Protecting the children therefore was an important reasoning/explanation for not telling the children. A factor that made honesty difficult was the uncertainty parents had about what to expect, as well as the age of the child. Ill parents felt it was more difficult to tell younger children or children with learning difficulties about parent's illness, as they did not know if they would be able to comprehend. Children's understanding was perceived by parents to be increased by the existence of physical symptoms, and parents felt that if things appeared normal then children wouldn't pick up on what's going on. Difficulties, however, were not restricted to younger children. Older children were described as being more likely to go seek out information elsewhere, such as from the internet, which might cause them distress if they came across some disturbing facts. because they're very clever, I mean R particularly ehm was going on the internet a lot, finding out answers to her questions about cancer and she became very angry, ehm, because she, she had taken what I'd said and then got on the internet and had just got any information, …I thought when she went on the internet she was doing her course work, I thought that she trusted my judgement and would just trust what I would say.. because she is a teenager (laughs), she's going to want to find out for herself and I, I was unprepared for that,. (Ivy, Well parent,44)
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All parents felt that how children were told was very important. Parents felt it would be helpful to receive recommendations about reliable websites that they could refer their children to. A few parents reported wanting others (health professionals, specialist nurse) to tell their children on their behalf. However all wanted control over what information their children were receiving. 12. 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 talk to her a lot - and she knows what questions to ask, cos when you're the parents they don't want to tell you do they?…(Dafydd, Well parent,31) Communication about the illness varied between families. Some chose to talk about it as much as they were able, while others preferred not to talk about it at all. The way parents chose to approach this aspect of communication with their children and family members largely reflected their own attitude to coping. Parents in denial and/or wanting to take a positive attitude chose not to talk about the illness and urged their children to do the same. 13. 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 parents, which suggest that parents and children have similar motives for limiting communication within the family. Although parents believe that they are the best person to tell the children and that ultimately the decision lies with them, both also describe a lack and/or need for support in ‘telling the children’. Communication was therefore
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considered important by all participants, but achieving this was considered challenging. Forrest et al. (2006) found that even young children had an awareness of cancer as a life threatening illness, and identified stories and reports in the media as important sources of information, which were sometimes misleading. Similar findings have been described in this study with regards to media, including television advertisements, internet, and magazines. The variability in information needs of children as described by this study is also supported by others (Forrest et al., 2006; Miller, 1987), suggesting that communication rather than information may be the crucial factor. As described previously, we have learnt from the literature (Houldin and Lewis, 2006; Hilton and Elfert, 1996; Walsh et al., 2005) that parents create barriers to communication by withholding information for fear of distressing their children, and the uncertainty they feel themselves regarding the future (Billhult and Segesten, 2003). Children also impede communication by not sharing needs and feelings with parents for fear of distressing the parents, a finding also reported by others (Heiney et al., 1997). Eiser and Havermans (1992) state that children can become “highly competent in shielding their knowledge from parents, who assume that silence indicates nonawareness or lack of interest”. Much of the current literature has been related to factual information about illness (Eiser and Havermans, 1992). Our study stresses that communication involves more than the giving of factual information, and includes aspects such as support and feelings of involvement. Huizinga et al. (2003) reported that children in their study found it easier to talk about the parents' illness with friends and other family members as they were fully informed. We take this further by suggesting that increasing the availability of information and communication within and outside the family, children may have better access to support and coping strategies. In addition our study implies that children are more able to communicate with their mother regardless of which parent has advanced cancer. Such suggestions would support previous reports that mothers are generally the expressive leaders of the family (Cohen et al., 1977), however it raises questions as to the needs of children who come from single father families or when mothers who are ill become too ill to deal with the communication/information needs of children. Improvements in communication may be achieved by supporting parents to talk with their children and by making them aware that children may be hiding information and communicational needs. In addition providing both parents and children with age appropriate information including information about the
cancer, treatment, own health, and available support and other sources information (e.g. websites) is needed. Girls in particular need greater access to information regarding the genetic implications of cancer. Further work is needed, however, to develop appropriate information for children, in particular older children. Children should not only be considered when a parents illness becomes terminal (Beale et al., 2004), but should also be involved and considered from diagnosis. 14. 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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