care and support needs of children and young people with cancer and their parents

PSYCHO-ONCOLOGY

Psycho-Oncology 15: 805–816 (2006)Published online 19 December 2005 inWiley InterScience (www.interscience.wiley.com).DOI: 10.1002/pon.1014

CARE AND SUPPORT NEEDS OF CHILDREN ANDYOUNG PEOPLE WITH CANCER AND THEIR

PARENTS

WENDY MITCHELL*, SUSAN CLARKE and PATRICIA SLOPER

Social Policy Research Unit, University of York, York, UK

SUMMARY

The importance of psychosocial support services for children with cancer and their families is recognised butevaluation of such services is less well developed with little information available about different patterns ofprovision. This paper provides an overview of psychosocial support children and their families in the UK receiveduring and after treatment. It reports the results of a postal survey of 303 families, within which parents and childrenidentified their satisfaction with support services and also areas of unmet need. Satisfaction was identified in a rangeof areas, including medical information and support from nurses and social workers. However, areas of unmet needwere also highlighted, especially age appropriate facilities, emotional support and information in different formats.Although British government policy currently seeks to develop standards and guidelines of care throughout theNational Health Service, this paper demonstrates that there is still a need to develop psychosocial support servicesand work towards recently established guidelines in order to ensure that families receive flexible but equitablepackages of care and support, wherever treatment is received. Copyright # 2005 John Wiley & Sons, Ltd.

KEY WORDS: childhood cancer; paediatric oncology; children and young people; psychosocial support;family support

INTRODUCTION

There have been many medical advances in thetreatment of childhood cancer and survival ratesnow exceed 70% (Cancer Research UK, 2003).Despite this, the diagnosis and treatment ofchildhood cancer remains a frequently traumaticexperience for patients and their families. Inaddition, children and families can face difficultiesin adjusting to living with uncertainty and thepossibility of recurrence of the disease (McGrath,2001; Eiser et al., 2000; Woodgate, 2000; Van-Dongen Melman, 2000; Bearison, 1991; Koocherand O’Malley, 1981).

Efforts to understand the process of adjustmentto serious illness have been informed by theories ofstress and coping. Lazarus and Folkman (1984)maintain that people’s efforts to deal with the

demands of stressful situations are dependentupon the availability and utilisation of resources.Important resources include social support, in-formation that helps people understand the situa-tion and the options open to them, and practicalresources, such as finance. These resource areascan be broadly grouped under the label ofpsychosocial support.

Research on childhood cancer highlights needsfor support with practical issues, relationships withfamily and friends, returning to school, informa-tion about the illness and treatment, and prepara-tion and support for treatment procedures.

Families face many changes in their everydaylives. Practically, parents care for their sick child,whilst also trying to juggle everyday domestic andcaring responsibilities (Soothill et al., 2001; Sloper,2000). This can have important financial implica-tions in terms of employment patterns andincurring additional expenditure (Corden et al.,2002; Yantzi et al., 2001; Halliday, 1990). Practicaland financial support and advice is thereforeimportant.

Received 4 January 2005Copyright # 2005 John Wiley & Sons, Ltd. Accepted 3 October 2005

*Correspondence to: Social Policy Research Unit, University ofYork, York YO10 5DD, UK. E-mail: [email protected]

Family relationships, particularly amongstpartners, parents and the ill child, and parentsand siblings, can also change. For example, longperiods of hospitalisation can separate familymembers and be emotionally stressful (Yantziet al., 2001; Van-Dongen Melman, 2000). Forchildren and young people, the importance ofongoing family support, especially from mothershas been well documented (Ritchie, 2001; Wood-gate, 1999). Friends, both home based and friendswith cancer, are also valued, with the formerproviding important links to the child’s ‘non-cancer self’, and cancer friends providing oppor-tunities to talk to others who understand (Ritchie,2001; Woodgate, 2000; Bearison, 1991). Helpingchildren and young people with cancer to maintainfamily relationships, retain old friendships andforge new relationships are important elements ofsupport provision.

Returning to school is a key consideration, onethat requires well-planned and co-ordinated re-integration programmes between hospital, schooland families (Bessell, 2001; Faulkner et al., 1995;Larcombe, 1995).

Preparing and supporting parents and patients,discussing treatment procedures throughout thecourse of the illness and providing ‘someoneto talk to’ has been demonstrated as beneficial(McGrath, 2001; Mastroyannopoulou et al.,1997). Clear and accessible ongoing cancer infor-mation for parents and children/young peoplein a range of formats is also an important sourceof support (Jankovic et al., 1999; Sloper, 1996;Eden et al., 1994).

The value of psychosocial support and need forsupport services has been widely acknowledged.However, psychosocial support in paediatriconcology services in the UK has developed in alargely ad hoc manner, with both the public andvoluntary sector providing support. Services havealso developed over a number of years, and so donot always reflect current patterns of treatmentand survival.

Past psychosocial support research has focusedupon a few regional centres, with little informationavailable about differing patterns of provision thatpatients and their families receive and theirpersonal evaluations of this support. The researchreported here sought to redress this balance,providing an overview of parents’ and children’sviews of the psychosocial support they receive atdifferent stages of the illness. The study was part ofa wider project, the first phase of which consisted

of a postal survey exploring psychosocial servicesprovided by all paediatric oncology treatmentcentres across the UK (Mitchell et al., forth-coming).

METHODS

Approval for the study was obtained from theNorthern and Yorkshire Multi-Centre ResearchEthics Committee.

Sample

In order to safeguard patient privacy andcomply with the Data Protection Act, question-naires were distributed to families via theirtreatment centres. Eleven UK treatment centreswere selected to provide a mix of northern andsouthern locations; metropolitan, urban and ruralenvironments; ethnic diversity; centres sharingcare with other hospitals and centres deliveringcare at a single site. However, four declined to takepart due to staff shortages and tight projectdeadlines. Seven centres therefore provided thesample. These seven centres provided the desireddemographic and service mix. With the aim ofobtaining at least 300 responses, stratified by ageof child and stage of treatment, and in order tofacilitate stratification and minimise the burden oncentres, each centre was asked to send question-naires to 80 families, equally spread, as far aspossible, across three age groups (0–5, 6–11 and12–18 years) and three treatment stages (ontreatment, off treatment and 5 years post-treat-ment-‘survivors’). Questionnaires were sent to 560families and returned by 303 parents and 112children/young people. The parental response ratewas 54%, the response rate for children/youngpeople based on the number of parents ðn ¼ 127Þwho responded with children aged 10 years plus(i.e. those eligible to complete a questionnaire) was88%.

Questionnaire design

The design of the questionnaire drew on existingliterature on support for children with cancer andtheir families; results of the UK wide survey ofpaediatric oncology treatment centre provision

W. MITCHELL ET AL.806

Copyright # 2005 John Wiley & Sons, Ltd. Psycho-Oncology 15: 805–816 (2006)

(Mitchell et al., forthcoming); consultation withthe project steering group, comprising profes-sionals involved in care for children with cancer,representatives of key voluntary organisationsconcerned with childhood cancer and academicsinvolved in the field; and qualitative research withchildren and parents. As part of the designprocess, individual and group interviews were heldwith 31 parents and 15 children and young peoplereceiving or having received treatment from eightcentres. Interviews highlighted key issues sur-rounding psychosocial support and service provi-sion prioritised by children/young people andparents, and these informed the development ofquestionnaires.

Two postal questionnaires were then developed,one for children/young people (10 years andabove) and one for parents. Nine parents andfour young people piloted the questionnaires. Inlight of their comments and suggestions from theproject steering group, minor amendments weremade.

The questionnaires explored a similar range ofservices to the treatment centre survey. Thisincluded:

* Hospital facilities for inpatients, outpatientsand those specifically for teenagers.

* Care received whilst in hospital.* Social and emotional support.* Support for other family members.* Information and advice.* Support surrounding the effects of treatment

(such as future fertility).* Transition support: hospital to home, returning

to school and long-term survivorship.

Within the parents’ questionnaire, respondentswere asked to indicate if a particular facility orservice was not needed, needed but not provided,or if provided, how satisfied they were with it on ascale of one to five. Children and young peoplewere similarly asked if they had received a range ofpsychosocial services,1 however, instead of using asatisfaction scale, the questionnaire asked childrento evaluate their satisfaction in terms of happinessor unhappiness or ‘it’s not important to me’. Inboth questionnaires, most questions were closedquestions, but an open section was provided forany additional comments about support services.Not all questions were fully completed by allrespondents, but generally, the information pro-vided was comprehensive.

Analysis

Data were analysed using SPSS. Frequencies ofresponse categories were analysed for all ques-tions. The results reported here highlight key areasof satisfaction and unmet need identified byparents and children/young people. A key areaof satisfaction was defined as over 70% ofrespondents reporting that they were satisfied orvery satisfied (parents); happy or had found aservice helpful (children/young people). Unmetneed was defined as respondents reporting aservice was needed but not provided or thatprovision was unsatisfactory (parents question-naire) or in the case of children, they were notprovided with a service needed or were unhappywith provision. Key areas of unmet need weredefined as 40% or over of the sample reportingunmet need. The decision on the criteria of 70 and40% was arrived at in consultation with theproject Steering Group and influenced by generalNHS guidelines indicating that services should beaiming to achieve satisfaction rates of around80%. As some psychosocial support services arecurrently patchy and services are still beingdeveloped, it was decided that satisfaction ratesof over 70% would identify areas where serviceswere making good progress.

These data are reported across the wholesample. Differences between age groups, treatmentgroups and age by treatment groups were analysedusing chi-square tests (as data were categorical).Areas showing a higher level of satisfaction orunmet need for a specific group, where differencesbetween groups were significant at p50:05, arealso reported.

RESULTS OF THE FAMILY SURVEY

Family demographics

There were no significant differences betweenthe sample to whom questionnaires were sent andthe achieved sample in terms of age, or whether onor off treatment (see Table 1). However, thenumber of questionnaires sent to families ofchildren who had been off treatment for 5 or moreyears was lower than planned and varied con-siderably between centres. Overall, only 11% ofquestionnaires were sent to this group. In addition,only 5% ðn ¼ 16Þ of returned questionnaires from

SUPPORT NEEDS OF CHILDREN WITH CANCER 807


parents and 13% of responses from children/young people ðn ¼ 14Þ were from this group. Thesenumbers were too small for analysis, so offtreatment and survivor groups were combined.

Table 2 compares the composition of responsesfrom children and young people with responsesfrom parents. Again very similar patterns werefound.

Fifty-six per cent of responses were from parentsof boys and 44% from parents of girls. This isconsistent with the gender breakdown on incidence

of childhood cancer (55% boys and 45% girls,Cancer Research UK, 2003). Leukaemia was themost common cancer type (45), followed by braintumours (12%). Other types of cancer reportedeach accounted for 7% or less of the sample.Most parents were married or living withpartners (82%); 85% had more than one childand therefore had siblings to care for in additionto their sick child. Ninety-seven per cent ofparents and 95% of children/young people werewhite British.

Table 1. Parents’ responses compared with centres sample (broken down by age, whether on or off treatment, and treatment stage

and age group)

Centres sample

% ðn ¼ 560ÞAchieved sample

% ðn ¼ 303ÞChildren’s mean ages

achieved sample years

ðn ¼ 303Þ

Treatment stage

On treatment 44.5 (249) 43.9 (133)

Off treatment 55.5 (311) 56.1 (170)

Age group

0–5 years 31.6 (177) 33.3 (101) 3.24 (101)

6–11 years 34.5 (193) 33.0 (100) 8.09 (100)

12–19 years 33.9 (190) 33.7 (102) 14.71 (102)

Treatment stage and age group

0–5 years on treatment 17.3 (97) 16.8 (51)

0–5 years off treatment 14.3 (80) 16.5 (50)





Table 2. Children’s responses compared to parents’ responses

Parents’ response

% ðn ¼ 127ÞChildren’s response

% ðn ¼ 112ÞChildren’s mean age

years ðn ¼ 112Þ

Treatment stage

On treatment 34.6 (44) 30.4 (34)

Off treatment 65.4 (83) 69.6 (78)a

Age groups

10–12 years 35.4 (45) 33.0 (37) 10.95 (37)

13–19 years 64.6 (82) 67.0 (75) 15.49 (75)

Treatment stage and age group





a13% of responding children were ‘survivors’. A separate analysis of these children was not conducted due to the small sample size.Data for the off-treatment group thus includes children who had completed their treatment within the last 5 years and those whohad completed treatment over 5 years ago.



Hospital facilities and practical support

The majority of parents and children weresatisfied with basic leisure facilities for inpatients,as demonstrated by Table 3.

Provision of playroom facilities was an area ofsatisfaction for parents of younger children forwhom playrooms are most relevant (inpatientfacilities: 0–5 years, 80% and 6–11years, 83%;outpatient facilities: 0–5 years, 71%).

Provision of age appropriate toys and activitieswas identified as an area of unmet need by childrenand young people (inpatients 47%, outpatients60%). In particular, more activities for teenagerswere wanted. Provision of teenage facilities wasalso noted as an area of unmet need, especially attreatment centres without separate teenage units,by parents of children on-treatment.2 Parents’responses indicated that for inpatients, unmetneed focused upon separate accommodation(64%), kitchen facilities (82%) and teenage activ-ities (53%) and for outpatients, teenage lounges(42%), kitchen facilities (42%) and activity co-ordinators (50%). Young people did not indicatehigh levels of satisfaction with these facilities butunmet need did not reach 40%.

Two other key areas of unmet need were carparking provision and hospital catering. Seventyper cent of parents highlighted unsatisfactory carparking. In addition, families on treatment identi-fied help with meeting parking costs as an unmetneed (40%). Here, the proportion was significantlyhigher than for those off treatment (26%)(w2 ¼ 21:4, df ¼ 6, p50:01). Parents of childrenon treatment (41%), and children/young people onand off treatment (65%) were dissatisfied withunappetising hospital food.

Advice and information

Parents, irrespective of their child’s age, weresatisfied with the medical information they re-ceived from doctors and nurses at diagnosis (80%)

and during treatment (81%). Similarly, childrenand young people of all ages were satisfied with theinformation they received about their illness at thetime of diagnosis (75%). How information wasprovided was also important, as 88% of children/young people felt that staff had used easilyunderstandable language and 78% valued stafftalking directly to them.

In contrast, key areas of unmet need emergedwith regard to accessing different types of infor-mation and for whom information was targeted.For example, children and young people (42%)and parents identified provision of video informa-tion about cancer and its treatment as an unmetneed. Parents felt that this was an unmet need forall family members (58% for children, 50% forsiblings and 44% for parents). Parents’ responsesindicated that this need was significantly higher forolder children (6–11 and 12–19 years) and theirsiblings compared to the youngest children andtheir siblings (w2 ¼ 12:99, df ¼ 2, p50:01 andw2 ¼ 20:12, df ¼ 2, p50:001). Parents also identi-fied a hospital library facility to borrow cancerrelated books as an unmet need for all the family(48%).

For the child with cancer, parents identified aneed for more age appropriate hospital welcomepacks (48%), and for older children (12–19), theprovision of audio information was viewed as anunmet need (42%). With regard to their ownunmet needs, parents highlighted summary sheetsof outpatient clinic appointment discussions (59%)and of their child’s case notes (62%). Parentswanted more advice on and assistance withaccessing information via the internet. In particu-lar, they wanted a list of recommended cancerwebsites (52%) and an internet search service forparents (41%). Although not a key area of unmetneed for children/young people, 35% wanted morehelp finding information on the internet.

As noted above, the vast majority of respon-dents were white British, however, amongstfamilies requiring the services of interpreters andtranslators ðn ¼ 10Þ, levels of unmet need werehigh at 50%. Similarly, 74% of parents requiringwritten information in different languages ðn ¼ 19Þfelt this was inadequately provided.

Care and support needs

Parents were generally satisfied with the con-tinuity of care received by their child (79%), and

Table 3. Parents and children’s satisfaction with basic leisure

facilities for inpatients

Leisure facility Parents Children/young

people

Television ðn ¼ 291Þ 82.5% (240/291) 90.9% (100/110)

Videos/DVDs ðn ¼ 290Þ 74.5% (216/290) 82% (91/111)



their own and their child’s involvement in decisionmaking with regard to treatment and care plans(85%). Eighty-two per cent of parents weresatisfied with the extent to which staff relied onthem to care for their child and to act as theirchild’s treatment co-ordinator (84%).

Family support, socially, emotionally and prac-tically, was also clearly valued by children andyoung people, irrespective of their age or stage oftreatment. Over 90% felt it was important forclose relatives, especially their parents, to be ableto stay with them whilst in hospital (96%) and tohelp care for them (97%). Indeed, over 80% notedthat this family support was ‘very important’ tothem.

Preparation for treatment similarly emerged asan area of satisfaction amongst children andyoung people, with 86% of respondents indicatingthat doctors and nurses spent enough timeexplaining their treatment and possible side effects,and 80% feeling that staff provided helpful advicethat sought to make treatment more bearable(80%).

Social and emotional support

Parents of children at all ages and stages of theillness were generally satisfied with the supportprovided by hospital staff, especially social work-ers and nurses (71%). This was also mirrored inthe children’s questionnaire. Here, children andyoung people valued the fact that hospital staffmade time to talk to them (85%) and listened totheir wishes and feelings (73%). Over half of thesample of children and young people (62%) hadtalked to a social worker and of these, 77% feltthat they had been listened to. However, of thosewho had not seen a social worker, 88% did notwish to do so.

Talking to peers was also important for childrenand young people at all stages of the illness, inparticular, talking to school peers (78%) and otherchildren in hospital with cancer (71%). However,opportunities to meet and talk to other childrenwith cancer were highlighted as an area of unmetneed (42%), participants wanted hospital staff toprovide more help facilitating this.

Less than a fifth of the sample (17%) hadattended an organised support group for children/young people with cancer. Once again, this wasnot identified as an unmet need, as the vastmajority (73%) did not wish to attend one.

Amongst those who had attended a groupðn ¼ 18Þ, all but one were happy with the supportand there was a clear preference for activity basedrather than more formally organised meetings.

Amongst parents, emotional support emergedas an area of poor provision. Parents of children atall ages and stages of the illness highlightedcounselling services for parents as an unmet need(41%). In addition, couples counselling wasidentified as an unmet need by 44% of parents ofolder children, this was significantly higher thanfor parents of younger children (w2 ¼ 6:01, df ¼ 2,p50:05). ‘Befrienders’ (someone providing infor-mal support via phone calls and hospital or homevisits) and professional key workers (providingemotional support and a co-ordinating/liaisingrole) were also identified by parents (45 and42%, respectively) as areas of unmet need. Incontrast, children and young people did notidentify the opportunity to talk to a counselloror psychologist as an area of unmet need or anarea of satisfaction.

Support for a child’s emotional and behaviouralproblems was needed by a substantial number ofparents ðn ¼ 201Þ and, it is important to note that,of those who did require this support, 46% weredissatisfied with provision or had not received anyprovision.

Support for other family members

The children’s questionnaire did not ask respon-dents to evaluate support provided for other familymembers, such as siblings and grandparents; resultsthus focus upon parents’ perceptions. Satisfactionwith support for siblings or grandparents wasgenerally low. Information for grandparents abouttheir grandchild’s illness and treatment was high-lighted as a key area of unmet need (48%). Parentsof teenagers (12–18 years) identified unmet needsfor siblings. These parents wanted more written ageappropriate information about cancer and itstreatment (60%) and also verbal information forsiblings, in particular, someone to talk to brothersor sisters at home (53%), at hospital (48%) or tovisit the sibling’s school to explain the illness andanswer questions (41%).

Transition supportReturning home after treatment. Survey data

indicated that parents and children were generally



satisfied with the support received from hospitalstaff on return home. Parents were particularlysatisfied with instructions received from hospitalabout who to contact and when, if concernedabout their child (86%) and being able to phonehospital staff for advice (88%). Children andyoung people’s satisfaction focused upon indepen-dence issues, such as staff helping them tobecome as independent as they wanted to be(75%), this also included staff explaining how tolook after equipment, such as their ‘line’ (75%),and being shown how to take their medicine(71%). Provision of medical equipment at homewas similarly an area of satisfaction amongst thoseparents requiring it ðn ¼ 235Þ, 81% were happywith provision and 79% of children and youngpeople indicated that their parents had receivedsupport with regard to looking after equipmentat home.

Returning home after treatment did not raiseany key areas of unmet need for children andyoung people. In contrast, parents identifiedinadequate provision in two areas. Amongstparents as a whole, 43% felt that an end oftreatment meeting with a group of parents andsupport staff (especially a nurse or social worker)would be helpful. Practically, among parentsneeding childcare and domestic help ðn ¼ 120Þ,68% indicated that these needs were not met.

Returning to school. Children and young peoplewere generally satisfied with both the educationaland practical support they had received before andon return to school. Seventy-three per cent felt thatschool and college staff had helped them to catchup with their studies and 74% felt that staff hadbeen understanding about changed appearance,such as wearing a cap or bandana in class.Although 94% of the sample of children andyoung people had experienced hair loss during thecourse of their treatment, discussion of hair losswith hospital staff did not emerge as a key area ofsatisfaction or unmet need.

For parents of both primary and secondaryschool children, key areas of unmet need werewritten and video information for their childabout returning to school (54%), and for theirchild’s classmates, information about cancer andits treatment (58%). An educational co-ordinatorto oversee their child’s return to school andliaise with service providers would also bewelcomed (46%).

Transition to adulthood and the future. Forparents with a child whose fertility may have beenaffected by cancer treatment ðn ¼ 252Þ, 72% hadfertility matters discussed with them, and 85% feltthat fertility issues had been dealt with sensitively.However, 45% of parents indicated that insuffi-cient support had been provided for them aroundfertility issues and 44% felt support had beeninadequate for their child. Parents of young peopleaged 12–19 years, in particular, identified informa-tion about fertility at diagnosis as a key unmetneed (42%). Amongst children and young peoplethemselves, only 41% indicated that staff haddiscussed fertility issues with them; half of thosewho had not talked about fertility issues ðn ¼ 36Þwould have welcomed staff discussion.

The children’s questionnaire invited ‘survivors’(i.e. those who had finished treatment 5 years agoor more) to evaluate the provision of ongoingsupport. Although only a very small proportion ofthe overall sample ðn ¼ 14Þ identified themselves as‘survivors’ and completed this section of thequestionnaire, results indicated that all 14 respon-dents received hospital checkups and for the vastmajority ðn ¼ 13Þ these were attended at leastannually and were viewed as satisfactory.

DISCUSSION AND CONCLUDINGCOMMENTS

Results of the family survey provide an evaluationof practical and psychosocial support for childrenand young people and their parents at differentphases of the illness. However, certain studylimitations are acknowledged. Whilst the responserate was reasonable for a postal survey and theachieved sample was generally representative ofthe total population surveyed in terms of age andwhether on or off treatment, this was a selfselecting sample and numbers were small for someimportant groups. The sample was predominatelywhite and included few survivors, this preventedspecific analysis of ethnicity and survivorshipissues. The lower numbers of questionnaires sentto survivors may be a reflection of the variationbetween centres in arrangements for follow up. Inaddition, the low response rate from this groupmay reflect a desire of some parents and youngpeople not to revisit their cancer experience.

In addition, asking participants to evaluatetheir level of satisfaction/happiness with existing



services and to specify if a service was neededor not is open to interpretation. It can be difficultfor respondents, especially children, to envisagewhether a service they have not received couldhave been helpful. Hence, unmet need may beunderreported. An ‘open’ section for commentsand the identification of needs not directlyaddressed was included in the questionnaire,however, few participants completed this. Irre-spective of these limitations, the survey movesbeyond previous research, as it presents the viewsof children, young people and parents andcompares their experiences of support. Many ofthe results mirror findings from the earlier treat-ment centre survey (Mitchell et al., forthcoming)and this is discussed below.

It is positive to note that there are a number ofkey areas of psychosocial support and serviceprovision that parents and children/young peoplevalued and regarded as satisfactory. This supportsthe general finding from the earlier treatmentcentre survey that psychosocial support hasbecome an established part of centre serviceprovision.

Areas of key satisfaction can be grouped intofive broad themes: leisure and play, supportfrom staff, medical information and preparationfor treatment, involvement and independenceopportunities, and support from family friendsand peers.

Previous literature has noted the importanceof how staff treat children (Woodgate, 1999;Faulkner et al., 1995). Here, children and youngpeople particularly valued staff making time forthem and listening to their wishes, and staffsupport when faced with the transition backto school. For parents, staff support duringtransition was also valued, especially on returninghome, when contacts and back up support wereprovided. Staff understanding, sensitivity andagreed procedures for contact with the hospitalare clearly important aspects of psychosocialsupport.

How information is provided is also important(Jankovic et al., 1999). It is thus heartening to seethat children and young people felt that hospitalstaff, particularly doctors, provided easily under-standable information and spoke directly to them.Although different children/young people wantdifferent degrees of information, children andyoung people in this study found it helpful whenstaff discussed and prepared them for invasivetreatment.

The importance of involving families andrespecting young people’s independence is fre-quently noted (Diefer-Hicks and Lavender, 2001;Roberts et al., 1998). Results from the parentssurvey indicate that many parents were satisfiedwith their own and their child’s involvement intreatment and care planning. Amongst childrenand young people, it was opportunities to be asindependent as they wished that came to the fore,especially during the transition from hospital tohome. Clearly, not all young people can be asindependent as they want to be at different phasesof the illness; however, staff sensitivity to andprioritisation of independence opportunities arekey components of support provision.

As in past literature (Ritchie, 2001), children ofall ages valued the support of their parents duringhospital stays. Peer support was also valued,however, children and young people would wel-come staff providing more help to facilitateopportunities to meet and talk to other childrenwith cancer. Support groups are often seen as agood way for children to meet others and supportone another, however, the children’s surveydemonstrated that only a small number actuallyattended support groups and amongst those whohad not attended any groups, there was not adesire to do so. This is important for centresand voluntary organisations to recognise whenplanning social support for patients, especiallyteenagers.

Despite these areas of good practice andprovision, unmet need and poor support persisted;six broad areas can be identified.

Practical support

Car parking and hospital catering emerged asareas of poor provision in the family survey. Thismirrors treatment centre survey results where staffat over half of the centres reported insufficientparking spaces and charges for parking. Theadditional expenditure incurred by car parkingcosts at a time when many families face changingfinancial circumstances (Sloper, 2000; Yantzi et al.,2001) adds to the burden of trying to cope withchildhood cancer. In addition, both parents andchildren/young people highlighted poor qualityhospital catering. The importance of cancerpatients maintaining a healthy diet and beingencouraged to eat is recognised and informationbooklets (Henry, 2004) have been produced.



However, this advice still needs to be translatedinto practice by provision of food that is moreappetising. These are two areas that clearly requirefurther consideration. Centres may need to thinkinnovatively, such as extending financial help andintroducing parking priorities for some patientsand providing more child friendly food oropportunities for families to prepare their ownfood.

Age appropriate facilities and activities

Provision of age appropriate facilities andactivities, especially for teenagers, continues to bean area of unmet need. The treatment centresurvey indicated that poorest provision wasunsurprisingly at centres without separate teenageunits and here the parents’ survey reiterated this.Many positive inroads have recently been made bythe Teenage Cancer Trust; however, this is an areathat continues to require further development.

Information: variety and scope

Family survey results demonstrated that moreinformation in a range of formats and specificallytargeted for different groups was required. Inparticular, poor audiovisual provision was notedand more help was required to access informationvia the worldwide web. Targeting information forspecific age and ethnicity groups was also high-lighted as an area in need of consideration. Moreage appropriate information for children andyoung people was wanted and information provi-sion for families whose first language is notEnglish was poor. These findings reiterate previousresults from the treatment centre survey whereonly a small minority of centres (6 out of 23)worked or had worked with children to produceage appropriate information and meeting theinformation needs of ethnic minority families waspatchy and not always representative of thepopulations they served.

Counselling support

A key treatment centre survey finding wasthe shortage of psychologists and counsellingsupport. Parents reiterated this, more counsellingopportunities and options were wanted, including

informal and formal services, such as counselling,emotional support and service guidance, hencethe suggestion for ‘befrienders’ and key workers.Both these concepts are not new, indeed, thevalue of key workers has been noted for manyyears (Greco and Sloper, 2004; Mukherjee et al.,1999).

Support for other family members

Results from the treatment centre survey in-dicated that facilities and support focused largelyupon patients and parents. This was reinforced bythe parents’ survey, as support for grandparentsand siblings were noted as areas of unmet need.Parents of teenagers wanted more written andverbal information for, and someone to talk to,siblings. Parents of children of all ages wantedmore information targeted specifically for grand-parents. In light of these unmet needs, it isheartening to see that the UK Children’s CancerStudy Group has recently published a series ofinformation booklets for siblings and grandpar-ents (Ablett and Ballard, 2005; Ballard andUKCCSG, 2004a,b). However, parents in thissurvey noted support needs beyond information;hence this is still an area that requires furtherdevelopment and consideration.

Clear and co-ordinated transition procedures

Clear and co-ordinated procedures lie at theheart of smooth transitions for patients returninghome, back to school or moving towards adult-hood. However, as the treatment centre surveyindicated, there is little uniformity amongst centresin practices and procedures. Hence, it comes as nosurprise that parents wanted more co-ordinatedtransition services, such as an educational co-ordinator to oversee their child’s return to school.Transition issues are often complex, especially inareas such as fertility. Although fertility issueswere handled with sensitivity, parents indicated aneed for more support and both parents andchildren/young people would welcome more ferti-lity information. Other research (Broome andAllegretti, 2001; Crawshaw et al., 2004) hashighlighted the difficulties in discussing informa-tion about fertility, both at diagnosis and laterwhen treatment has finished, and the need for stafftraining.



The family survey has demonstrated that provi-sion of psychosocial support is by no means clear-cut; families’ experiences of support can becomplex and multidimensional. Satisfaction withservice provision and perceptions of unmet needcan simultaneously exist in the same broad area ofprovision, for example, some aspects of informa-tion provision are satisfactorily provided but gapsremain. There are differences between children andyoung people and parents in their evaluations ofsupport, perceptions of what support they wantand when they want it. This emerged most clearlywith regard to counselling and returning to school.Counselling was highlighted as an area of unmetneed by parents of children all ages and stages oftreatment and more counselling options would bewelcomed. However, children and young peopledid not identify opportunities to speak to acounsellor as an area of need or satisfaction, butthis may be because many had little knowledgeof how counsellors could help. Children/youngpeople were generally satisfied with the supportreceived before and on return to school, whereasparents of both primary and secondary schoolchildren identified information and poor co-ordination as unmet needs.

A lack of co-ordination and uniformity amongstpractices and procedures was noted in the treat-ment centre survey. English government policyrecognises and is currently working towardsestablishing standards in all areas of health care(National Service Framework for Children, YoungPeople and Maternity Services, Department ofHealth/Department for Education and Skills,2004). There is clearly much good practice inpaediatric oncology centres and psychosocialsupport is an established part of practice. How-ever, there is still a need to develop more formalpolicies and standards across centres and theidentification of key gaps by the family (andearlier centre) survey has informed the develop-ment of guidelines for childhood cancer publishedby the National Institute for Clinical Excel-lence}NICE (2005). NICE guidelines acknow-ledge gaps in psychosocial support provision andmake recommendations for increased provisionthat would go a long way to fill the gaps identifiedby children and parents. These include recommen-dations that all children and families should have:

* access to the advice and support of a socialworker;

* access to psychological services with expertise inchildren’s cancer;

* structured psychosocial assessments at keypoints of the illness.

The family survey indicated that support shouldaccommodate the needs of different family mem-bers, including siblings and grandparents, anddifferent sectors of society. Support is furthercomplicated as children’s and families’ needschange over the course of the illness and treat-ment. This need for an age appropriate andindividualised yet holistic family approach issimilarly recognised within the NICE guidelines.Such support packages draw on the knowledgeand skills of different members of the multi-disciplinary team and both psychological andsocial work services have key roles to play, alongwith nursing and medical staff. Appropriatetraining and support relevant to the needs ofchildren and young people with cancer should beprovided to enable staff to carry out these roles.The family survey illustrated the need for keyworkers and this has subsequently been prioritisedby NICE. The development of clearer standardsshould help to provide a baseline from whichcentres can begin to work towards more compre-hensive and comparable packages of care andsupport for families, irrespective of where treat-ment is provided.

ACKNOWLEDGEMENTS

This research was funded by CLIC. We are grateful tothe staff at paediatric oncology treatment centres fortheir help with recruiting young people and parents totake part in focus groups and interviews, and distribut-ing questionnaires. We would like to thank the youngpeople and parents who helped us by generously sharingtheir experiences and views, in interviews and bycompleting questionnaires. Finally, we would like tothank members of the project Steering Group for theirsupport and advice throughout the project. The viewsexpressed here are those of the researchers and notnecessarily those of CLIC.

NOTES

1. The children/young people’s questionnaire was short-er and the questions more direct compared to theparents’ questionnaire. Thus it is not possible todirectly compare parents and children’s responses.



However, where consistency or inconsistency be-tween parents and children was found, this is noted inthe paper.

2. Analysis of teenage facilities for inpatientswas confined to responses from parents whosechildren were on treatment rather than those offtreatment in order to reflect current inpatientfacilities, as a number of teenage cancer units haverecently opened.

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