Development of a resource for parents withadvanced cancer: What do parents want?

JANE TURNER, M.B. B.S., F.R.A.N.Z.C.P.,1 ALEXANDRA CLAVARINO, B. SOC. WORK, B.A., PH.D.,2

PATSY YATES, B.A., DIP. APP. SCI., M. SOC. SCI., PH.D.,3

MARYANNE HARGRAVES, B. HEALTH SCIENCES ~NURSING!,4 VERONICA CONNORS, B.N.,5

AND SUE HAUSMANN, B.N., GRAD. CERT. MANAGEMENT6

1Department of Psychiatry, University of Queensland, Brisbane, Australia2School of Population Health, University of Queensland, Brisbane, Australia3School of Nursing, Queensland University of Technology, Brisbane, Australia4Haematology and Oncology Clinics of Australasia, Wesley Campus, Brisbane, Australia5Prince Charles Hospital and Royal Brisbane and Women’s Hospital Combined Palliative Care Service, Brisbane, Australia6Oncology Ambulatory Care Services, Princess Alexandra Hospital, Brisbane, Australia

~RECEIVED August 22, 2006; ACCEPTED September 27, 2006!

ABSTRACT

Objective: Parents coping with a diagnosis of advanced cancer experience distress andguilt about the impact of the disease on their children but report that there are fewresources specific to advanced disease to guide and support them in discussions with theirchildren. Although some resources have been developed to assist parents with advancedcancer, it appears that these are not widely disseminated.

Methods: To determine the need for a brief resource that could be given to parents atthe point of diagnosis of advanced cancer, including its content, in-depth interviews wereconducted with eight women with advanced breast cancer.

Results: Women confirmed that they had received minimal assistance from healthprofessionals in discussing the diagnosis with their children, and even when professionalcounselors were accessed they were not always attuned to the specific needs of parentswith advanced cancer. Women felt frustrated that information they did access focused onearly disease and lacked the details women felt they needed in coping with advancedcancer. Women felt that there was a need for a brief resource that reassured parentsabout the impact of the cancer on their children, including practical strategies to helpthem cope and examples of the ways other parents had responded to difficult questionssuch as about parental death. A draft resource was developed, critically reviewed by theparticipants, and their comments incorporated into a final version.

Significance of results: This article expands on the themes highlighted by women asimportant to assist parents with advanced cancer, including the final resource that wasdeveloped.

KEYWORDS: Advanced cancer, Parents, Children, Information

INTRODUCTION

The diagnosis of advanced cancer is a major blow,as it raises the prospect that disease can no longer

be cured and confronts the person with his or herown mortality. Among parents with advanced can-cer, distress about the diagnosis is compounded bygrief and guilt about the impact on their childrenand uncertainty about how to talk with their chil-dren about the diagnosis ~Turner et al., 2005!. SomeWeb-based resources have been developed to helpparents with advanced cancer, such as Helping Your

Corresponding author: Jane Turner, Department of Psychia-try, K Floor, Mental Health Centre, Herston, 4029, Australia.E-mail: jane.turner@uq.edu.au

Palliative and Supportive Care ~2007!, 5, 135–145. Printed in the USA.Copyright © 2007 Cambridge University Press 1478-9515007 $20.00DOI: 10.10170S1478951507070204

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Child Deal with a Cancer Recurrence or ProgressiveIllness in the Family ~American Cancer Society!and Advanced Cancer: Living Each Day ~NationalCancer Institute!. However in the absence of a sys-tematic approach to provision of information andsupport for parents with advanced cancer, it isunlikely that these resources will be widely pro-moted. Parents may fail to access these resourcesbecause of lack of skill or experience in internetsearches or because to do so would be highly con-fronting and a source of distress ~Saldinger et al.,2004!. Health professionals may avoid discussion ofemotionally charged issues such as parents’ con-cerns about their children because of fear of dis-tressing the patient ~Maguire, 1999!; however, otherpertinent reasons for avoidance of discussion maybe lack of knowledge and lack of easy access toresources. Existing brief resources such as bro-chures that are widely available and accessible toclinicians for distribution to patients with cancerfocus on the early stages of disease and treatment,neglecting the specific needs of parents with ad-vanced cancer.

What Is the Impact of ParentalAdvanced Cancer on Children?

The developmental stage of the child is a key factoraffecting children’s needs for information and emo-tional support ~Northouse, 1995!. This is true ofboth adjustment to parental cancer and subsequentbereavement ~Christ, 2000!. Levels of stress in chil-dren with a parent with advanced cancer have beenfound to be even higher than those experiencedafter bereavement ~Christ et al., 1993!. Howeverparents may not be aware of the level of distress oftheir children ~Welch et al., 1996!, with the conse-quence that the emotional needs of children areneither identified nor appropriately addressed. Evenapparently minor practical issues can impact onchildren’s’ adjustment—for example, the redistribu-tion of domestic tasks when a parent is ill is inev-itable, and parents may expect that their childrenwill intuitively “step up to the mark.” However theimposition of increased domestic responsibility with-out negotiation can lead to increased stress, espe-cially for adolescent daughters ~Grant & Compas,1995!.

How Do Parents Respond to TheirChildren?

Parents feel that they lack information about howto talk with their children, and this increases pa-rental distress ~Elmberger et al., 2000!. Given this

lack of information and fear of distressing theirchildren ~Kirsch et al., 2003!, it is not surprisingthat patterns of avoidance of discussion by parentsare common ~Barnes et al., 2000!. If parents do talk,they try to protect their children by being positive~Hilton et al., 2000! and avoid exploration of thechild’s emotions or understanding, instead focusingon practical information ~Shands et al., 2000!.

What Would Help Children to Cope?

Children need information that is appropriate totheir developmental stage. Normal routine appearsto help with coping ~Hilton, 1996! in the case ofearly cancer, and more open communication alsoassists ~Leedman & Meyerowitz, 1999!. However asdescribed above, open communication is distressingfor parents, whose instinct may be to avoid discus-sion, this being compounded by the tendency ofchildren themselves to become more avoidant ascancer progresses, leading to increased distress inchildren ~Compas et al., 1996!.

This Project

The aim of this project was to develop a resourcethat could be widely distributed to parents whenthey are diagnosed with advanced cancer, to encour-age them to feel more confident about initiatingdiscussion about the cancer with their children, togive suggestions about strategies to assist theirchildren to cope, and to give guidance about moredetailed resources that are available. Given theevidence about parental anxiety, guilt, and avoid-ance, this resource would need to have a highlysupportive framework, while being grounded in thebest evidence. However, much of the evidence aboutways of assisting children is drawn from researchrelating to early cancer. To determine the specificneeds of parents with advanced cancer in relationto their children, their access to resources, and therelevance of the existing research evidence, a seriesof structured interviews was conducted with a smallnumber of women with advanced breast cancer.This article reports on the results of those inter-views and the development of the new resource.

METHODS

Women were recruited through the Breast CancerNetwork of Australia, a consumer group for womenwith breast cancer, which has a subgroup com-prised of women with advanced breast cancer. Mem-bers of the subgroup were informed about the projectvia a Network newsletter and invited to partici-pate. Ethical approval for the project was obtained

136 Turner et al.

from the University of Queensland, and womenwere informed that their responses were confiden-tial and that they were free to withdraw from theproject at any time. Women consented to partici-pate in a telephone interview, using a structuredproforma ~see Table 1!.

Interviews were tape recorded, transcribed andresponses collated into themes relevant to the de-velopment of the resource. A draft resource wasthen developed, distributed to the women for criti-cal review, and their feedback was incorporatedinto the final version.

RESULTS

Eight women participated in interviews, their agesranging from 39 to 57 years. All but one of thewomen were married. Two women had one child,one woman had four children, and the others eachhad two. Ages of children at the time of diagnosis ofadvanced disease ranged from just under 2 years to

13 years. The time elapsed since diagnosis of ad-vanced disease ranged from 8 weeks to 10 years.Key themes raised in the interviews are summa-rized below.

Assistance Offered By Health CareProfessionals

Of the eight women interviewed, five declared thattheir health care professionals avoided any discus-sion about the impact of the cancer on children orways of talking about the diagnosis with their chil-dren: “Nobody offered a thing.” Of the three womenwhose children were acknowledged, the assistanceranged from a general question about the children,to being given a list of books that the woman couldobtain herself, to “I was told ‘A social worker isavailable to provide information about children’sneeds if necessary.’ But that was not pursued indetail, more just in passing.” These women strug-gled to know how to broach the subject with theirchildren but, “There was no direct information aboutwhat I might say to him @son# .”

This pattern of avoidance of discussion aboutchildren continued during treatment, often overmany years. One woman whose metastatic diseasewas diagnosed five years ago said: “There has onlybeen discussion by health professionals when I haveraised it myself,” echoed by a woman receivingfollow-up for 10 years after being diagnosed withadvanced disease: “The only time anyone has everdiscussed anything is if I raise it as a problem.”

Women also felt that the traditional emphasis onprovision of information by physicians could be ex-panded to include other members of the multidisci-plinary team: “There is a great avenue in oncologyfor nurses to be able to provide information forparents about children. The nurses never raise it@concerns about children# , but they are in a goodposition to be able to provide 1:1 support andinformation.”

Usefulness of Existing Resources

In the absence of assistance from health profession-als, women felt alone and concerned about how theycould talk with their children, so initiated investi-gation of resources: “Basically I found out thingsmyself.” However women found few resources rele-vant to their needs: “There doesn’t seem to be muchavailable for women with metastatic disease. I’vetried to look for information but it isn’t alwaysrelevant” and “It was also targeted for people withearly cancer.”

Furthermore, even when women did find infor-mation, they had no way of appraising its accuracy

Table 1. Themes addressed in interviews

Demographic data:• Age and marital status• Number of children• Highest level of education• Current0previous work status

Cancer diagnosis:• Time elapsed since original diagnosis of cancer• Time elapsed since diagnosis of advanced cancer• Ages of children at diagnosis of advanced disease

Discussion about children’s needs:• Discussion by health professionals about the needs

of children• Advice from non-health professionals, including

familyCommunication with children:

• Extent of discussion with children about the cancer• Did you use the word cancer and why0why not?

What has helped?• What things have you found to be most helpful in

helping your children cope?• What specific information would have been helpful

for you at the time when you were diagnosed withadvanced disease?

Difficult issues:• What has been the worst thing about talking with

your children?• Are there things you would change about the way

you handled things with your children or that youwould advise others to do differently?

• Are there other issues facing your family with whichyou would like assistance?

Content of a resource:• Given your experience over time, what specific

information would you like to be included in aresource for parents with advanced cancer?

Development of a resource for parents with cancer 137

and currency: “I went to the library and searchedfor everything I could find about cancer. Unfortu-nately a lot of the material was not very up-to-date,so some of it was very negative and that was verydepressing. It was only later that I realised that theinformation was out-of-date and I could have sparedmyself some misery.”

Experiences of Seeking Assistance

Professional Help

Several women who sought assistance through coun-selors or cancer service agencies reported negativeexperiences because the counselor was not suf-ficiently aware of the issues facing women withadvanced breast cancer: “The first one was nothelpful—she said we shouldn’t focus on the cancer,and that I didn’t know for sure that I was going todie from advanced breast cancer. She really had noidea—maybe she might have known a bit aboutearly breast cancer. She said we had to be positiveand get on with life, and didn’t really understandthat women with advanced breast cancer can getsick and die. She seemed to think that I wasoverreacting.”

Another woman commented: “A few young friendswith breast cancer have died. One friend had adaughter who was 4 years old and a son who was 8years old. She felt she just couldn’t explain whatwould happen. This friend was seeing a counsellorwho told her not to say she could die because thenevery day her son would wake up and be anxiousand wonder if she was going to die that day. I thinkin the end they did talk about death.”

Countering these experiences was that of a womanwho felt that the style of the counselor was tooconfronting about her mortality, something whichshe found highly traumatic: “It was soon after I wasdiagnosed with secondaries and I was upset, be-cause the reality of it was really hitting home. I wasat the cancer centre and asked about the children,and talked with a counsellor who said ‘You’re wor-ried you won’t be able to raise your children. Butyou’ve probably got about 2 years and you shouldmake the most of it.’ I had never asked for a time-frame and was so angry. I just freaked out. I thoughtthat was quite out of line.”

Women wanted information, and assistance insupporting their children, but even if a counsellorwas available, this often posed logistic problems,especially for adolescent children: “Part of the rea-son was that the counsellor only operated between9 a.m. and 4 p.m., and my daughter had to missschool to see her, and I had to drive her to schooland she’d be late and that was obvious that she was

going somewhere. It was hard work. And she hadlots of things on after school, and that was anotherreason she resented going to see a counsellor.”

Peer and Informal Support

Several of the women felt that membership of apeer support group was helpful, as it reduced thesense of isolation and lack of understanding abouttheir situation. Some women gleaned sporadic piecesof information through their support group: “I doattend a support group and sometimes there isgeneral discussion about children, but nothing spe-cific,” and “Other people have given some informa-tion that what you say will have to depend on theage of the children.” In other instances, more struc-tured information was available: “I went to a sem-inar with some of the women from my supportgroup and one of the presenters talked about get-ting young children to do drawings as a means ofexpressing themselves, but I’m not sure what herbackground was and what qualifications she had.”

Informal connections with women with cancerafforded women the opportunity to think of otherstrategies to help their children, although thesewere not always successful: “I did know a lady ~nowdead! who also had cancer, who had children ofsimilar ages to mine, and thought that if we got thechildren together that might be a good thing, butthey didn’t really hit it off, it just didn’t work.”

Experiences of Talking with Childrenabout Cancer

Diagnosis of Early Cancer

All women felt that it was necessary to tell theirchildren that they had cancer when the originaldiagnosis was made. In making this decision, womenweighed the potential impact if they did not telltheir children: “I made the decision that I had to behonest with the children because if things wentwrong or there were problems in the future andthey found out I hadn’t told them the truth theywould lose trust in me. They would feel betrayed,and wonder if they could believe what else I said tothem. Trust is so important.”

Another woman said: “We have used the wordcancer from the beginning and have been honestwith them. I feel that you have to be honest—mypersonal understanding is that if they are not toldthe truth kids will be rude, and angry, hate you.”

Diagnosis of Advanced Cancer

When discussing the diagnosis of advanced cancer,women described the need to help their children

138 Turner et al.

maintain hope, while being honest: “He asks me if Iwill get better, and I say ‘I hope so.’ I think you needto be honest but that doesn’t have to mean beingreally blunt. And the problem with the word canceris the stereotypes and of course not all cancer is adeath sentence. It is important not to lie to chil-dren, but it is also important to give them informa-tion that they can understand, and gradually, asthings evolve.”

This theme of providing information but not be-ing too explicit about the implications of this wasechoed by another woman: “I did tell them that Ihad the cancer in my bones. I guess I don’t knowwhat other word I would use than cancer. I think itis important to be honest, so told them the cancerhad spread to my bones. I didn’t spell out whatexactly that meant and that this could lead to beingterminal. They didn’t really ask very much, theytended to take what I said at face value. I havealways had the feeling that I am going to die fromthis, but that it won’t be for a long time. I will diefrom it eventually but it is a long-term thing.”

Similarly: “I am an upfront person and we havetold her the truth, but couched in a positive way.”

Women emphasized the benefits of treatments intheir discussions: “Indicated that I would have treat-ment and would not then have any more pain. Didnot say to the children that there was no cure. Toldthem that the treatment would do its best.”

Responding to Questions about Death

All of the women felt that they may die from theircancer at some stage, but in any discussion withtheir children felt it was important to maintainsome optimism: “Their fear is that Mum’s going todie. If my son has asks: ‘Are you going to die?’ Ianswer that I am having chemotherapy to keep thecancer under control. The chemotherapy might notkeep doing that in the future, but because we watchTV, we are aware of new drugs coming onto themarket. It ’s about maintaining hope for the future,rather than making them fear I might die tomorrow.”

Another woman explained: “In the beginningwhen I was diagnosed with early breast cancer thefirst question the children asked was: ‘Are yougoing to die?’ My daughter was only 7 years of age.I answered them that sometimes people with can-cer live for a long time and some only live for ashort time, that I hoped it wasn’t going to happenthat I would die, but there was no 100% guaranteethat it wouldn’t happen. I made the analogy off lowers in the garden—that some bloom for a longtime and some don’t.” And “If the children haveasked ‘Are you going to die?’ I have tended to re-spond in a general way ‘We’re all going to die’,

trying to make it more general and taking theemphasis away from just me.”

If the woman felt that there was prognosticuncertainty, it made it more difficult to respondto questions about death: “The children have askedif I am going to die. I have said ‘No,’ and that Iam having the best possible treatment so that thecancer won’t come back. This has been a consid-ered decision as there is so much uncertaintyabout future treatment developments and given asolitary metastasis this may not happen. The hard-est thing is feeling that I can’t be completelyhonest. A sense of it being too painful to implantin their mind distress about something that maynot happen, and even if it does, the time frame isvery uncertain. I don’t know the timing of it.Don’t want to burden them with distress whenthis may not be necessary.”

Drawing on Experience: Women’sExperiences of Not Being Told

Women drew on their personal experiences andthose of others to consider how communication aboutparental illness and death might shape subsequentadjustment: “The other reason is because of my ownexperience. My father died when I was 14 years old.It was never discussed with me, I wasn’t given anyinformation, wasn’t allowed to go to the funeral andthat made it so hard—I didn’t want that for mychildren. I also have a friend who is only in her 30sand her father died from cancer and she wasn’t toldanything about it and she is still so angry.”

Similarly, another woman related: “I once met awoman whose mother had died from cancer whenshe @the woman# was 9 years old. No one told herwhat was happening to her mother, her mother wasjust whisked off. That woman has remained angryand bitter into her later life.” And, “I know thatwhen my grandfather died my brother was 4 yearsof age. My mother told him that Pa went to sleep.Some time later he asked when Pa was going towake up, and when she said that he would neverwake up he was so distressed. It was terrible for mymother and for the whole family. Maybe partlybecause of that I think you have to be honest.”

Things That Have Helped

Some of the following strategies were things thatwomen had worked out for themselves over time,some came from links with others with advancedcancer, and some represented a modification of whatwomen had gleaned from resources for patientswith early cancer.

Development of a resource for parents with cancer 139

Honesty

Honesty and trust emerged as recurrent themes.Women were emphatic that an honest approachwas essential: “It is important to have trust. If youdon’t tell them they can’t trust you. Secrets are nota good thing.” Although acutely aware of their prog-nosis, women felt that being able to talk about thecancer was likely to help children to cope: “We haveused the word cancer. I think if you’re honest thechildren can deal with it better. Honesty is impor-tant. Then they won’t be so afraid, and it ’s not sucha big scary word.”

Staging Information

Especially for younger children, women were awarethat their children’s needs for information changedover time according to their understanding, andchanges in clinical status. Changes in well-beingwould also impact on the woman’s attitudes towardthe disease and how she approached discussionwith her children: “I think you change what you sayover time, and that relates to my approach to thedisease as well. I had felt very well until last yearand so had felt very optimistic.”

Routine

Although this may pose some logistic difficulty,women felt that having some structure made theirchildren feel safer and more grounded: “Routinehelps, and keeping up with some fun things.” Sim-ilarly, “Kids don’t like being different, and havingthings as normal as possible helps.”

Involvement of Children in Treatment

None of the women described receiving any profes-sional recommendations about involving their chil-dren in treatment, but their attitude to this wasremarkably consistent: “You don’t want them to feelexcluded and if they don’t know things they willimagine the worst. When I was having radiother-apy it was during the school holidays and I took thechildren up to treatment with me. One of my friendsraised the concern that maybe that was too trau-matic for the children, but I feel it helped themcope, because they were involved and they knewwhat was happening.” Another woman felt: “I hadthe children attend radiotherapy treatments occa-sionally. It demystified the treatment and was help-ful for them. The younger daughter made a posterwhich they put up in the treatment area and sheliked the attention.”

One woman ref lected that, on balance, it mighthave been better to have more actively involved herchildren: “I didn’t encourage them to come because

I knew they were busy. But it probably would havebeen better to have encouraged them to come. Itwould bring the reality of the situation home, andhelp them realise that it is serious.”

Getting Support for Yourself

Women found it helpful to connect with others fac-ing advanced cancer, although this could also comeat a cost: “Being part of a support group which isinformal and casual and includes members withadvanced cancer @not specific to breast# . Can shareideas with other people. Can be a double-edgedsword when you see people around you who arepretty sick and wonder if that is ahead of you, butcan cope by thinking how much better off you arethan them.”

Several women felt that there was pressure toadopt a positive attitude, but this inhibited expres-sion of feelings and obtaining emotional support:“Looking back I think that keeping up the façadewas short-changing the family, because I was shap-ing they way they reacted, and it was only when Ireached a point where I couldn’t pretend it wasalright anymore that I could let myself get thesupport. That isn’t only me, and you do get pressurefrom other people to be positive because they can’thandle to hear what it is really like.”

In addition to the importance of having emo-tional connections with others and accepting emo-tional support, several women alluded to the needfor time away from family commitments and therole of caring for others: “Parents are all differentand have different needs, but you need some timefor yourself.”

Accepting Help

In addition to the need for emotional support, prac-tical assistance emerged as an important theme: “Ifyou are part of a mother ’s group that mutual sup-port can be helpful with practical issues. Childcareis a big issue if your children are young. Especiallyif you can’t afford to pay for it. You should never feelafraid of asking people for help with practical thingssuch as childcare.”

Telling the School

Not all of the children were of school age. Themothers of school-aged children felt that if the schoolwas supportive that would make things easier fortheir child: “We have told the school. My youngerdaughter accepted an offer of some sessions withthe school psychologist and that was helpful forher.”

140 Turner et al.

What Should Be Includedin Any Resource?

It was obvious that women felt enormous sadness:“Just the knowledge that I’m not going to be therefor them. I’m not scared of dying but it ’s the thoughtof leaving the children behind.” They also expressedgrief and concern about the potential impact oftheir cancer on their children: “I feel that the un-certainty is a burden on the children, and I feelsadness and guilt about that. I often think abouthow it might affect them in the longer term.” And,“Concern about the long-term impact emotionally. Iknow it will affect them.” Although not expresseddirectly, it was clear from these comments andothers made by women that any resource wouldneed to provide information in a sensitive and sup-portive way, balancing difficult issues with someoptimism about the capacity of parents to help theirchildren.

Women in this study had coped with their dis-ease for up to 10 years and had over time developedstrategies to respond to their children. Howeverthey still felt that further information would havebeen valuable: “If had more information could haveresponded to their concerns.” In addition to thehelpful items described above, women wanted tosee inclusion of information as listed below.

Developmental Stages

The ages of children of women in this study rangedfrom just under 2 years of age to 13 years whentheir mother was diagnosed with advanced cancer.None of the women had information about the dif-fering impact depending on developmental stages,and all expressed the desire for information aboutthe key issues relevant to children at differing ages.

Talking about Dying

Women wanted information and reassurance thattheir approach was likely to be helpful and gaveexamples of how they were approaching it: “I’mtrying to really prepare them now without talkingabout it directly. I guess I am slowly preparingthem. We are doing normal things, but I say ‘ifsomething happened’ and that could be to Daddy orme, they would still live in the house, they would besad, but they would be safe, and looked after andthey would never be abandoned.”

Examples of What Other FamiliesHave Done to Cope

Women felt that it was empowering to hear aboutthe ways in which others had coped, this informa-tion being seen as authentic and valuable: “Every-

body likes to hear other peoples’ stories—what othershave said and how they have coped.”

Things That Might Help ChildrenHave a Better Outcome

1. Honesty: Women felt it was important forparents to be reassured that this approachwas in the best interests of their children,despite the temptation to avoid talking aboutdifficult issues. “If you don’t tell them, chil-dren imagine the worst anyway, and that scaresthem more. Telling the children is not going todamage them, but secrets will.”

2. Reassurance: Especially for younger chil-dren, participants felt it was important forparents to tell their children that the cancerwas “not their fault”, and explicitly: “Childrenneed reassurance that they will be safe ‘nomatter what.’ ”

3. Sharing time together: When coping withtreatment and side effects it was often hard tofocus on family time, and women felt it wouldbe helpful to provide practical examples ofthings families could do: “I remember readingsomething about the need for sharing withchildren. Any information would have beenhelpful.”

4. Helping them not to be hurt by care-less comments: Children can be exposed tothoughtless or even malicious comments abouttheir parents by other children, and it wasthought worthwhile to preempt any distressthis might cause: “Tell them that they shouldn’tbe wounded by the comments of others, forexample at school, as other people are notaware of their situation.”

5. Having a break: “If the children have a chanceto have some time with other family or friendsthat is good, because they need a chance toescape it @the cancer# . It ’s hard to escape itwhen you are at home and your mother ishaving treatment all the time.”

6. Being prepared to revisit and revise in-formation: Women recognised that it was easyto overlook the need for children to be keptinformed of changes in disease and treatmentoptions, and parents needed encouragement tohave ongoing discussions with their children.

The revised brochure is presented in Figure 1. Itis designed to be copied back-to-back and foldedinto a brochure format.

Development of a resource for parents with cancer 141

142

Fig. 1. Brochure for parents with advanced cancer.

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DISCUSSION

All of the women who participated in this projectwere eager to contribute to the development of aresource to assist parents coping with advancedcancer. Their own distress about the trauma of thediagnosis of advanced cancer had been compoundedby the dearth of resources to assist them in talkingwith their children, and women expressed the hopethat a resource could be made widely available tohealth care professionals such as oncologists, sur-geons, and oncology nurses, who could provide thisfor parents. It is known that health professionalsfind it stressful to care for young patients withcancer and those with young children ~Catalan et al.,1996; Fallowfield et al., 1998!, and lack of trainingand limited access to resources is likely to increasethis distress. Access to a resource that is evidence-based and developed in collaboration with patientswith advanced cancer may well be a valuable toolfor professionals who otherwise feel uncertain aboutways of offering assistance.

Women felt strongly that there was a need for abrief resource that could be given to parents at thepoint of diagnosis of advanced disease, as this wasa time of great distress when parents felt uncertainand in need of support. Despite having coped withthe previous diagnosis of early breast cancer, womenfelt that the diagnosis of advanced disease poseddifferent challenges in terms of their children, andthey did not assume that strategies that had workedin the past would be best now. Women saw that aresource such as this was necessary to provide asupportive framework that would minimize dis-tress and fear about how to talk with their children,following which parents could feel more confidentabout exploring other more detailed sources of in-formation, rather than avoiding confronting theinevitable sadness and distress. Although it seemsthat many of the women had ample skills in assist-ing their children, they were emphatic that manystrategies had only been arrived at over consider-able time, and they would still have liked profes-sional reassurance that following their instincts,for example about open communication, was bestfor their children.

Many of the themes identified by the women inthis project, such as the need for routine, practicalassistance and honesty, are included in other re-sources designed to assist parents coping with se-rious illness ~Rauch & Muriel, 2005!. However,women also felt the need for detailed informationabout issues specific to the diagnosis of advanceddisease, such as ways in which other parents hadresponded to children’s questions about death. Otherkey themes that women felt were unique to parents

with advanced cancer were the need to modify andadd to information as the parent’s clinical statuschanged and the need for reassurance for childrenthat they would continue to be safe even after theparent’s death. Unkind or inappropriate commentsby schoolchildren, for example that the parent willdie, can be refuted by parents with early cancer. Forparents with advanced cancer, it was seen as im-portant to help the child understand that com-ments were often ill informed and that the course ofcancer varied for each person. Women felt thatespecially when a parent is highly symptomaticand undergoing treatment, as is often the case withadvanced disease, it was helpful to remind parentsthat children still need “time out” rather than beingimmersed in the cancer experience. Underpinningall of these themes was the prominent issue ofhelping parents feel less guilty and afraid about theimpact on their children. For parents with earlycancer, there is often a notion that after acutetreatment the family can “recover,” although inreality much has changed. However, parents withadvanced cancer know that the cancer will not becured and need help to cope with concerns abouttheir children’s future.

It could be argued that recruitment of only womenwith breast cancer and via a single source has led toa biased sample. The Breast Cancer Network ofAustralia was established in October 1998 with theexpressed aims to empower, inform, represent, andlink together those affected by breast cancer. It haslinks to over 17,000 individuals and 150 breastcancer groups. Recruitment of participants via thisorganization allowed access to women from diverseregions in Australia, treated in a variety of clinicalsettings. This reduced the risk of bias inherent inrecruitment from a single setting, where support-ive care might be far from typical. Clinically, thewomen were a more heterogeneous group than mighthave been anticipated, the extent of disease rang-ing from a single metastasis to widespread, symp-tomatic disease. Similarly, the time since diagnosisof advanced disease ranged from 8 weeks to 10years. Improvements in treatment for advancedbreast cancer may mean that women survive manyyears, and it could be argued that these women didnot face the poor prognosis of, for example, patientswith advanced lung or pancreatic cancer. However,in this instance it meant that women had experi-ence of coping with advanced cancer often oversome years, and had a wealth of experiences theycould share about ways of responding to their chil-dren, including things that they now felt they couldhave done differently. The small number of par-ticipants in this study may mean that results can-not be generalized to the broader population of

144 Turner et al.

parents with advanced cancer; however, there wasremarkable consistency of themes raised across theinterviews.

ACKNOWLEDGMENTS

The authors thank the Breast Cancer Network of Austra-lia for its interest in this project and assistance withrecruiting participants. The women who participated arethanked for their enthusiasm, frankness, and generosityin contributing to the development of this resource. Thisresearch was supported by a grant from the QueenslandCancer Fund Services Committee.

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