parental communication and children's behaviour following diagnosis of childhood leukaemia

PSYCHO-ONCOLOGY

Psycho-Oncology 14: 274–281 (2005)Published online 24 August 2004 inWiley InterScience (www.interscience.wiley.com).DOI: 10.1002/pon.843

PARENTAL COMMUNICATION ANDCHILDREN’S BEHAVIOUR FOLLOWING

DIAGNOSIS OF CHILDHOOD LEUKAEMIA

SALLY-ANN CLARKEa,*, HELENA DAVIESb, MERIEL JENNEYc, ADAM GLASERd and CHRISTINE EISERa

aDepartment of Psychology, Cancer Research, Child Health Psychology, Child and Family Research Group,University of Sheffield, Western Bank, Sheffield, S10 2TP, UK

bMedical Education/Late Effects, Sheffield Children’s NHS Trust, Western Bank, Sheffield, S10 2TH, UKcLlandough Hospital, Penlan Road, Penarth, South Glamorgan, CF64 2XX, UK

dDepartment of Oncology, Children’s Day Hospital, St James University Hospital, Leeds, LS9 7TF, UK

SUMMARY

Many parents find decisions about what to tell their child with cancer difficult. Open communication is generallyconsidered the best policy and most health care professionals encourage parents to talk openly and honestly aboutthe illness. However, parents differ in their views about what to tell the child. In this study 55 parents of children(36 boys and 19 girls, mean age = 7.33 years) newly diagnosed with acute lymphoblastic leukaemia (ALL) wereinterviewed about (i) the child’s reactions and behaviour following diagnosis, (ii) their views about what to tell theirchild and (iii) factors influencing parents’ communication with the child. Interviews were analysed using thematicanalysis. Most children showed behavioural and mood difficulties after diagnosis. Older children were given moreinformation. In addition, parents’ perceptions of childhood cancer affect the way they communicate with their child.These findings may be used to inform training packages in order to facilitate improved communication amongsthealth professionals. Copyright # 2004 John Wiley & Sons, Ltd.

INTRODUCTION

Advances in medical treatment have led toimproved survival rates in children diagnosed withcancer (Stiller and Eatock, 1999), and especially inacute lymphoblastic leukaemia (ALL). This is thecommonest form of childhood leukaemia. Cur-rently, approximately 75% of children can expectevent free 5-year survival. Despite these improvedsurvival rates, a diagnosis of cancer is associatedwith considerable distress for the family. Childrenare likely to be frightened by the hospitalenvironment and fearful of needles and othermedical procedures (Dahlquist and Taub, 1991).The mean age of diagnosis of ALL is 4 years(Pinkerton et al., 1994), making it difficult for

families and medical staff to explain the reasonsfor treatment to children. Children may respondby objecting to treatment and becoming aggres-sive, moody or depressed (Dahlquist and Taub,1991).

In the 1960s, doctors advised parents to protecttheir child from information about the life-threatening nature of the disease and need forlengthy treatment. Informing children it wasassumed, would add to their distress (Share,1972). Such views have changed over time. Mosthealth professionals now believe in encouragingparents to talk openly and honestly about theillness in order to achieve good quality care(Department of Health Action Plan, 2002; BritishMedical Association, 2001; Scott et al., 2003).There is now much consensus that open commu-nication is considered the ‘best’ policy, both forthe child and the family generally (Dahlquist andTaub, 1991).

The child who is not informed or givenopportunities to ask questions about the illness is

Received 23 February 2004Copyright # 2004 John Wiley & Sons, Ltd. Accepted 27 May 2004

*Correspondence to: Department of Psychology, CancerResearch, Child Health Psychology, Child and Family Re-search Group, University of Sheffield, Western Bank, Sheffield,S10 2TP, U.K. E-mail: [email protected]

not necessarily protected from fear or worry. Infact, they may sense that the illness is a taboo anddangerous secret that should not be spoken about(Claflin and Barbarin, 1991). Furthermore, mostinevitably pick up information on their ownaccord, regardless of their parents’ views. Childrenmay discover information during hospital visits orsense distress in their parents and medical staff.They may overhear conversations, learn that theyhave cancer from their peers, or draw their ownconclusions about their illness (Kendrick et al.,1986). Refusal and non-compliance with treatmentin children and adolescents with cancer has beenlinked with a lack of understanding, and poorcommunication regarding diagnosis and treatment(SIOP Working Committee on Psychosocial Issuesin Pediatric Oncology, 2002). Evidence from adulthealth care settings suggests that improved knowl-edge and understanding of illness is associatedwith improved compliance and better health careoutcomes (Marelich and Murphy, 2003, Miuraet al., 2000).

There is now evidence that good psychosocialadjustment is related to a child’s early knowledgeof the diagnosis. Children who learned they hadcancer at diagnosis were better adjusted comparedto those who were misinformed initially or learnedtheir diagnosis at a later stage (Slavin et al., 1982).

Open and honest communication may also behelpful for the whole family, (Fergusson, 1976;Koocher and O’Malley, 1981; Spinetta and Deasy-Spinetta, 1981). Slavin et al. (1982) reported thatmany parents who did not initially discloseinformation found this to be a source of stressboth during and after the treatment period.

For parents, decisions about what to tell thechild about the disease and treatment are difficult.They often feel ill equipped to discuss a potentiallylife threatening disease with their child (Claflin andBarbarin, 1991), worry how their child will react,or fear that they themselves will ‘break down’whilst telling the child (Young et al., 2003).Nevertheless, parents are the gatekeepers ofcommunication in most cases and manage theexchange of information between health careprofessionals and the ill child (Scott et al., 2003).They decide what, when and how their childshould be told about the illness (Young et al.,2003). Their decisions may be based on a numberof variables, including the age of the child (Claflinand Barbarin, 1991), with younger childrenreceiving less information regarding diagnosisand treatment in comparison to those over nine

years of age. Parents have also reported that whatthe child was told is influenced by their ownreligious beliefs, whether or not there were otherchildren in the family, and their own access toinformation and support (Chesler et al., 1986).

The purpose of this paper is to describe mothers’reports about children’s behavioural and emo-tional responses following diagnosis. In addition,we report how mothers explanations are related todemographic and illness variables as well as theirperceptions of the nature of cancer.

METHOD

Participants

The sample included 55 mothers of children (36boys and 19 girls) newly diagnosed with acutelymphoblastic leukaemia (ALL). Eligible familieswere English speaking, with a child aged between 3and 18 years old. Children with advanced diseasenot expected to survive two years, known cognitiveor neurological impairment prior to diagnosis, orother complicating conditions such as Down’ssyndrome were excluded from the study. Allchildren were being treated on standard treatmentprotocols (UKALL, 1999). This involved che-motherapy for approximately 2 years for girls and3 years for boys. The mean age of children atdiagnosis was 7.33 years. Families were recruitedfrom four major cancer centres within the UK,and were predominantly Caucasian. Of the 55mothers who took part in the study, 38 weremarried or living with a partner, 5 did not respond,and 12 (22%) were single parents. In 12 families,fathers were also present at the interview.

Procedure

The study was approved by the appropriateMedical Ethics Committees. Over an 18-monthperiod families of newly diagnosed children wereapproached by a research nurse during a routinehospital visit and given verbal and writteninformation about the study. Families wereapproached approximately 4 months after diag-nosis. This was felt to be long enough afterdiagnosis for families to have recovered from theinitial distress and shock, but when issues ofcommunication would still be important. Mothers

PARENTAL COMMUNICATION AND CHILD BEHAVIOUR 275

Copyright # 2004 John Wiley & Sons, Ltd. Psycho-Oncology 14: 274–281 (2005)

wishing to participate provided signed consent andgave their home address and telephone number.They were then contacted by a member of theresearch team who arranged an interview. Allinterviews were conducted in the family home.59.3% of (81) families approached agreed toparticipate in the study. Reasons for refusing totake part in the study included the child notwanting to take part, not wanting to talk aboutfeelings, feeling it was too close too home, andfeeling it would not benefit the child. Sevenfamilies were self referrals (contact magazine).

Measures

We devised a semi-structured interview todetermine the overall impact of diagnosis onchildren and their families. Based on a numberof themes identified from previous clinical andresearch experience, this included many aspects ofthe family’s experience, such as the child’s school-ing, effects on siblings and impact on parents’work and mental health.

The complete interview lasted approximately1–2 h. In this paper, we focus on a subset of datarelating to the child’s behaviour, parental commu-nication, and parents’ perceptions of their child’sillness.

Example interview questions

‘Tell me a bit about your child now. Has shechanged at all over this last few months sincediagnosis?’

‘We are interested to hear parents’ views abouthow they talk with their child about their illness.Have you thought about what to say to X abouthis/her illness? ’

‘Are there things you feel s/he shouldn’t know?’

RESULTS

Thematic Analysis

Interviews were analysed using a method ofthematic analysis. This is a systematic techniquefor coding text into themes and identifying themesthat emerge in relation to each other (Polit andHungler, 1983). Non-parametric tests were used as

appropriate to explore relationships betweenthemes.

Five main themes were defined. These were: (1)children’s responses to illness during the first 3months following diagnosis, (2) information givento the child, (3) parents’ communication style, (4)parents’ perceptions of disease, and (5) parents’responses to treatment regimes. Based on Chisquare analysis, gender was not found to besignificantly associated with any of the themes.

Reliability and validity

In order to ensure validity, regular meetingswith members of an experienced research teamwere conducted to discuss the development of thecoding framework and resolve any emergingissues. After the first 20 interviews had been codeda second researcher helped refine the initial codingframework that was then used to code all inter-views.

In order to achieve reliability, measures weretaken to ensure the stability and reproducibility ofthe data (Busha, 1980). Stability refers to theextent to which the same coder consistently codesdata over time. In this study a checklist of codingrules was established. This was used to ensurestability between different coders and statedspecific rules. For example: in some instancesfriends or relatives were also present at theinterview, in these cases only parents responseswere coded. Reproducibility refers to the tendencyfor more than one coder to consistently re-code thesame data in the same way over a period of time.An initial seven interviews (13%) were secondcoded. Reproducibility was calculated to be 92.6%indicating a high level of shared understanding ofthe data. Discrepancies were resolved throughdiscussion.

(1) Children’s behaviour and responses to illness

Behavioural and mood changes. All parents re-ported some acute physical side effects of treat-ment. These included sickness, hair loss, tiredness,and sweating. In addition, 84.1% of the childrenshowed negative behavioural (temper tantrums,feeling agitated, immature, boisterous, uncoopera-tive, and manipulative) or mood (anxious, needy,withdrawn) changes. The remaining childrenshowed more positive behavioural changes.

S.-A. CLARKE ET AL.276


‘I think she’s matured a lot. She’s older than heryears at the moment’.

Two thirds of parents reported that their childneeded help with self care tasks, sometimesbecause of additional treatment demands (mouthwash) or because they could no longer do tasksthey previously managed themselves. Children alsoexperienced sleep problems such as nightmares,bedwetting, pain, and waking for the toilet. Therewere also behaviour difficulties including wantingto sleep with parents, refusing to go to bed orfeeling afraid of the dark.

A third of children experienced disruptions totheir social lives and were consequently describedas hesitant, withdrawn, quieter towards others,and isolated. ‘Before he was ill he was veryoutgoing. . .very confident, sociable. But at themoment he’s very lacking in confidence he doesn’twant to go anywhere without me. He doesn’t havemany friends at the moment’.

Child’s response to illness, treatment and hospitalvisits. Half of the children were described ascoping well with treatment. They dealt well withthe treatment, ‘put on a brave face’, ‘took things intheir stride’, and ‘accepted the situation’. The restwere experiencing mild anxiety, were self consciousand withdrawn, worried, clingy and needy, or hadlost confidence and demanded more time fromparents.

A third of children were described as goodcopers and liked hospital or coped well, a thirdwere poor copers and were very upset during visitsor responded badly to medical procedures, and theremaining third were accepters and were ‘not toobad ’ .

In terms of medication, some children acceptedthe need for medication, and complied readily.Others took a more proactive role, remindingparents when tablets where due, or helping withpreparation such as breaking tablets up. ‘I wastrying to dissolve these tablets in the water and thenhe just turned round and said ‘shall I swallow thesetablets?’ I couldn’t believe it. So now he swallows allthe tablets’.

Two thirds of children were coping with, orovercoming problems such as difficulty swallowingtablets or feeling sick. The remaining children hadexperienced no problems.

(2) Information given to the child. We were ableto distinguish four ways in which parents commu-

nicated factual information about the disease andtreatment.

Optimism: Medication will help the child getbetter, ‘you have to take the special medicine to getbetter’.

Realism: Although the medication will hopefullymake the child better, there will be some sideeffects that might make them feel ill. ‘you’re havingthis special medicine that will hopefully make youbetter. I’ve explained that the medication will makehis hair fall out and make him sick’. Thisexplanation was favoured by all three parentswho had given children full information about thedisease.

Pessimism: Medication will make child feel ill.These parents did not also emphasise the chancesof getting better ‘I have told her that her lifedepends on this (medication) and to not do it is justplain daft’.

Factual Information given about the names oftablets or times when they should be taken butwithout explanation for why the child must takethe treatment or what the treatment does. ‘heknows the names of his drugs and he knows howthey’re administered’.

Parents also reported giving children informa-tion about the length of time they would spend ontreatment. Some parents gave the child a clear timeframe and told them exactly how long thetreatment would last or the age when they wouldfinish. Others gave ambiguous time frames failingto specify how long the child would spend ontreatment. ‘It’s no good saying 3 years to himbecause that doesn’t mean anything’. Children givena clear time frame were older (M=9.65 years;SD = 3.14) than those given ambiguous timeframes (M=5.55 years, SD =1.74) (U = 15,p = 0.007).

(3) Parents’ communication style. Parents dif-fered in terms of the degree of openness and thesophistication and detail of the informationprovided. Four communication styles were identi-fied.

Minimal information. These parents told theirchild only that they had poorly blood withoutrevealing the severity of the disease. These parentsfelt that too much information would only causeanxiety. ‘In front of her obviously you have to becareful what you say because its not a hundred



percent. . . and there can be some nasty bits and youdon’t want her to have to know those if she doesn’tneed to’.

Ambiguous information. Some parents told theirchild that they had leukaemia but did not mentioncancer, or were vague that leukaemia was a formof cancer. In some cases parents used termsambiguously ‘It is a type, but not. . .it is not aserious one’.

Factual information about cancer. Other parentsinformed their child that the diagnosis was cancerbut did not mention that the disease was serious orlife-threatening ‘It’s a childhood cancer but thechances are very good ’.

Full information. Three mothers claimed to havegiven their child a complete explanation of thedisease including the possibility of death.

As might be expected the degree of opennessadopted by parents was related to the child’s age(Table 1). Parents disclosed more detailed andhonest information to older than younger children(rho =0.67, p 50.001).

(4) Parents’ perceptions of disease. Many par-ents knew little about cancer before the child wasdiagnosed. Almost half initially believed leukae-mia was incurable and would lead to death,signified the end of everything, felt that theywould not cope or be able to get through it, or thata disaster had occurred. The remainder felt theyhad been unable to grasp the information theywere given, were in shock, or could not absorb thedetails of the diagnosis and procedures and couldthink only of saving the child’s life.

Parents who believed the diagnosis was incur-able, resulting in eventual death, were less likely toinform the child that their diagnosis was cancerand gave the child as little information as possible.

In contrast, parents who described themselves astoo shocked and unable to grasp what they hadbeen told, were more likely to tell their child asmuch as they did understand, including that theyhad cancer (X2 = 7.77, df = 1, p50.05).

(5) Parents’ responses to treatment regimes. Ofthe 38 mothers whose partners were present in thehousehold, it was mothers’ (n=23) primaryresponsibility to keep track of medication, ensurethe regime was adhered to and that the child tookmedication as prescribed. Of these mothers, 15spoke about support and 8 mothers felt theirpartners did not offer enough support with thechild’s medical care at home. For the remainingfamilies, responsibility for medication was sharedbetween mother and father, but in one family thefather had total responsibility. Single parents wereof course responsible for medication alone.

Half of mothers reported no special difficultieswith home treatment and found it became easierwith practice. The rest were anxious or found theresponsibility a huge burden. They would oftenwake feeling worried in the night or found it hardto remember which tablets to give at the appro-priate time‘. . .I’m very forgetful and I’m frightenedthat I’m going to forget’.

Most mothers attempted to deal with thesedifficulties by using diaries and charts, helping thechild by breaking tablets into small pieces, ormaking medication time into a game. ‘. . . at thebeginning we were making it into a play thing,something to do with action man saying ‘come onwe’re on a mission! ’ ’

Relationship between parents’ communication andchild’s behaviour

Forty-two parents reported behavioural andmood changes in their child. Thirty-five of theseshowed negative mood or behavioural changes. Ofthese, 16 children (mean age = 5.05, SD = 1.95)were given minimal information or told only thatthey had poorly blood, and 19 children were toldthey had leukaemia, cancer or that they might die,(mean age = 9.49, SD = 3.40). Seven children(mean age = 6.45, SD = 1.46) were reported toshow positive behavioural changes. All of thesewere told they had cancer or leukaemia. Theseresults suggest a relationship between parents’communication policy and children’s behavioural

Table 1. Mean ages in relation to parents’ communication

policy

Degree of openness Mean age of

child (Std. Dev.)

N

Minimal information/poorly blood 4.24 (1.71) 17

Leukaemia 5.63 (2.67) 8

Cancer excluding death 8.73 (3.71) 15

Full explanation including death 12.0 (2.65) 3



and mood changes following diagnosis althoughthe results do not reach significance by conven-tional tests.

Of the children who had been told they hadleukaemia, cancer or that they might die, thosewho showed positive behavioural and moodchanges (n=7) were younger than those whoshowed negative behavioural or mood changes(n=19). This suggests that the child’s behaviouralresponse is a reflection of parents’ communicationrather than simply a consequence of chronologicalage.

DISCUSSION

The majority of children experienced some beha-vioural and mood changes after diagnosis. Theseincluded anxiety, moodiness, sleep problems andtemper tantrums. At this early stage after treat-ment, all children were unable to take part in theirnormal social activities, or attend school or play-group. Half the children were described as copingwell with treatment, fewer were coping well withhospital appointments.

Mothers were primarily responsible for chil-dren’s medical care at home. Parents are oftenexpected to carry out numerous aspects of thechild’s medical care at home (Dahlquist et al.,1993) including administering multiple doses ofmedication, carrying out personal care such asusing mouthwash to prevent mouth ulcers, mon-itoring the children’s reactions to treatment, andensuring children consume enough food and drinkwhilst on chemotherapy (Manne et al., 1999). Thiswas often worrying and perceived to be a largeresponsibility, which several mothers felt theymust deal with alone because partners did notsupport them. Mothers reported numerous strate-gies for gaining the child’s collaboration withmedication. Diaries and charts were devised tohelp them remember when medication should betaken, and some mothers made medication into agame when children refused to take their tablets.

Some children were actively involved in mana-ging their own medication, reminding motherswhen tablets should be taken, for example. This isimpressive given the young age of the sample andthat data were collected within a few months ofdiagnosis.

A small number of children were described asbecoming more mature as a result of the illness.

This was usually attributed to increased contactwith grown ups and exposure to the adult worldduring hospital visits. It is possible that thesechanges are also related to parents’ communica-tion style as these children all had parents whofavoured open communication. Children who havemore information about their disease may bebetter equipped to cope because they understandthe importance of taking medication, feel able todiscuss their worries and concerns with parents,and trust their family and health professionals.The challenge is to create such a trusting atmo-sphere for very young children who are unable tounderstand details of the disease.

As reported previously (Chesler et al., 1986;Claflin and Barbarin, 1991), older children weregenerally told more about their disease andtreatment. Parents’ communication was also influ-enced by their own perceptions of disease.Although we did not measure knowledge directly,our results suggest that parents who understoodthat cancer was life-threatening, were less likely totell the child they had cancer and more likely toprovide the child with minimal information. Incontrast, those who described themselves as veryshocked or distressed were more likely to reportbeing open and telling the child as much as theythemselves understood. This is contradictory toprevious findings that shock at diagnosis is toogreat to permit parents to provide children with agreat deal of information (Chesler et al., 1986).

Research concerned with communication of badnews suggests that the majority of parents under-stand less than half of what doctors say at theinitial consultation (Mack and Grier, 2004; Kodishet al., 2004). Furthermore, the stress of receivingbad news may prevent patients from retaininginformation (Mack and Grier, 2004). It is possiblethat parents who described themselves as shockedand in a state of disbelief did not understand orretain as much information as other parents. As aresult, their claim that they told the child every-thing needs to be seen in the context of their ownlimited understanding.

Although older children were told more, chron-ological age may be less important as an indicatorof children’s ability to understand illness informa-tion, than a child’s competence and maturity(British Medical Association, 2001). At the sametime, parents’ views about what to tell their childare influenced by their own perceptions of thechild’s maturity as well as their own knowledge ofthe disease.



Despite current medical practice promotingopen communication, parents still face the difficultdilemma of deciding how to explain cancer to theirchild. While professional organisations adviseopen communication with children, (British Med-ical Association, 2001), parents may be morereluctant. Clinic staff have an important role toplay helping parents overcome their naturalreticence and anxiety. Parents’ perceptions at thetime of diagnosis might play an important role indetermining future communication with the child.

As recommended for the study of communica-tion within medical settings, we adopted aqualitative approach to data collection (Malterud,2001). As with any qualitative piece of work, thestudy has a number of limitations. There wasconsiderable variability in length, detail andcomplexity of parents’ reports. Some of this maybe due to how comfortable parents felt during theinterview, and ways in which questions wereinterpreted and answered. Interviewing is timeconsuming and expensive. Our sample was self-selected and 40.7% of families did not wish to beinvolved, raising questions about the representa-tiveness of the sample.

Our findings suggest that parents’ perceptionsand expectations of childhood cancer affect theway they communicate with their child, at least inthe months immediately following diagnosis. Inthe longer term, it is not clear how, if at all,parents’ communication style affects children’sbehaviour and coping ability. Similarly, it is notknown how interrupted schooling and restrictedopportunities to participate in normal socialactivities affect children. One third of childrenwere described as less sociable than before theillness. This is an important finding given the needfor 2 or 3 years further treatment and restrictedopportunities for social participation.

Communicating information about a life-threa-tening illness is a complex issue and this studyhighlights certain issues parents face and mustdiscuss with children. One approach to commu-nication includes involving the child at the ‘dayone talk’ and allowing the physician to deliver thenews to the child with parents present (Mack andGrier, 2004). This approach can help relieve theburden and provide support for parents who feelunable to inform their child, and also ensures thatthe medical team is aware of what the child hasbeen told.

Themes that emerged from this analysis mayserve as guidelines for hypotheses for future

studies that examine the impact of communicationon children’s behaviour as well as the influence ofparents’ perceptions of disease on communicationstyle. These findings may be used to informtraining packages in order to facilitate improvedcommunication amongst health professionals.Findings also emphasise the need to evaluateparents’ knowledge of the illness at different stagesin the cancer journey to ensure they have accurateand informed perceptions of the disease andtreatment options, in order to convey informationand support to their child.

ACKNOWLEDGEMENTS

This study was funded by Cancer Research UK (C481/A121). We would like to thank Yvonne Vance, MarcelleCrinean and Linda Sheppard for help conductinginterviews and the nurses (Linda Phelan, Janet Powell,Liz Whiles) for recruiting patients to the study.

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parental communication and children's behaviour following diagnosis of childhood leukaemia

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