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The impact of cancer on the physical, psychological and social well-being of childhood cancer survivors H.C. William Li a, * , Violeta Lopez b , O.K. Joyce Chung a , Ka Yan Ho a , S.Y. Chiu c a School of Nursing, The University of Hong Kong, 4/F, William M.W. Mong Block, 21 Sassoon Road, Pokfulam, Hong Kong b Research Centre for Nursing and Midwifery Practice, Nursing and Midwifery Practice, Australian National University, Australia c Paediatric Oncology Unit, Queen Mary Hospital, Hong Kong Keywords: Cancer Chinese children Physical Psychological Social Survivors abstract Purpose: Notwithstanding the advances in medical treatment, childhood cancer survivors are at risk of adverse physical, psychological and social effects of the cancer treatment. The purpose of this study was to examine the impact of cancer and its treatments on the physical, psychological and social well-being of Hong Kong Chinese childhood cancer survivors. Method: A total of 137 childhood cancer survivors (aged 9e16 years), who had their medical follow-up in an oncology out-patient clinic were invited to participate in the study. Participants were asked to respond to the standardized measures of depressive symptoms and self-esteem. Additionally, 15 participants from the group were selected for a semi-structured interview. Results: The results revealed that more than half of the participants presented depressive symptoms. Results also found that the mean depressive symptom scores for childhood cancer survivors were statistically signicant higher than those of school children without cancer (p ¼ 0.01), while the mean self-esteem scores for the survivors were statistically signicant lower (p < 0.01). Additionally, quali- tative interviews indicated that cancer and its treatments have great impact on the daily life of childhood cancer survivors. Conclusion: The study reveals that cancer and its treatments have a great impact on the physical, psychological and social well-being of survivors. It is essential for healthcare professionals to develop appropriate interventions with the aim of promoting physical, psychological and social well-being for these children. Most importantly, it is crucial to help them develop a positive view of the impact that the cancer experience has upon their lives. Ó 2012 Elsevier Ltd. All rights reserved. Introduction Recent advances in cancer treatment have resulted in an increase in survival rates for childhood cancer (Li et al., 2010a; Stam et al., 2006). In Hong Kong, there are approximately 150 newly diagnosed cases of childhood cancer each year. The incidence of childhood cancer is about 10 per 100,000 children (Hospital Authority, 2009). According to the Childrens Cancer Foundation (2010), the chance of a cure for most types of leukemia is about 70%, and more than 80% of Hong Kong children with lymphoma are cured. Regrettably, a review of the literature reveals that a number of childhood cancer survivors develop chronic health problems in early adulthood, such as second malignancies, growth and endo- crine dysfunction, and serious organ toxicities (Hudson et al., 2003; Sharp et al., 2007). Langeveld et al. (2004) points out that both chemotherapy and radiotherapy may have adverse effects on normal body tissue, manifested months or even years after the completion of treatment. Cancer and its treatments may not only adversely affect the physical well-being of childhood cancer survivors, but their psychosocial well-being as well (Langeveld et al., 2004). Previous studies indicate that radiotherapy, chemotherapy and surgical intervention may have long-term effects on the psychosocial well- being of survivors, which include increased depression and decreased self-esteem (Essen et al., 2000; Stam et al., 2006; Zeltzer et al., 2009). Previous studies from Western countries have found that survivors had higher levels of depression and lower self- esteem than healthy children (Essen et al., 2000; Michel et al., 2010; Recklitis et al., 2006; Servitzoglou et al., 2008). The ndings of these studies warrant special attention by healthcare professionals. * Corresponding author. Tel.: þ852 91761546; fax: þ852 287260799. E-mail address: [email protected] (H.C.W. Li). Contents lists available at SciVerse ScienceDirect European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon 1462-3889/$ e see front matter Ó 2012 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejon.2012.07.010 European Journal of Oncology Nursing 17 (2013) 214e219

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Page 1: The impact of cancer on the physical, psychological and social well-being of childhood cancer survivors

at SciVerse ScienceDirect

European Journal of Oncology Nursing 17 (2013) 214e219

Contents lists available

European Journal of Oncology Nursing

journal homepage: www.elsevier .com/locate/ejon

The impact of cancer on the physical, psychological and social well-being ofchildhood cancer survivors

H.C. William Li a,*, Violeta Lopez b, O.K. Joyce Chung a, Ka Yan Ho a, S.Y. Chiu c

a School of Nursing, The University of Hong Kong, 4/F, William M.W. Mong Block, 21 Sassoon Road, Pokfulam, Hong KongbResearch Centre for Nursing and Midwifery Practice, Nursing and Midwifery Practice, Australian National University, Australiac Paediatric Oncology Unit, Queen Mary Hospital, Hong Kong

Keywords:CancerChinese childrenPhysicalPsychologicalSocialSurvivors

* Corresponding author. Tel.: þ852 91761546; fax:E-mail address: [email protected] (H.C.W. Li).

1462-3889/$ e see front matter � 2012 Elsevier Ltd.http://dx.doi.org/10.1016/j.ejon.2012.07.010

a b s t r a c t

Purpose: Notwithstanding the advances in medical treatment, childhood cancer survivors are at risk ofadverse physical, psychological and social effects of the cancer treatment. The purpose of this study wasto examine the impact of cancer and its treatments on the physical, psychological and social well-beingof Hong Kong Chinese childhood cancer survivors.Method: A total of 137 childhood cancer survivors (aged 9e16 years), who had their medical follow-up inan oncology out-patient clinic were invited to participate in the study. Participants were asked torespond to the standardized measures of depressive symptoms and self-esteem. Additionally, 15participants from the group were selected for a semi-structured interview.Results: The results revealed that more than half of the participants presented depressive symptoms.Results also found that the mean depressive symptom scores for childhood cancer survivors werestatistically significant higher than those of school children without cancer (p ¼ 0.01), while the meanself-esteem scores for the survivors were statistically significant lower (p < 0.01). Additionally, quali-tative interviews indicated that cancer and its treatments have great impact on the daily life of childhoodcancer survivors.Conclusion: The study reveals that cancer and its treatments have a great impact on the physical,psychological and social well-being of survivors. It is essential for healthcare professionals to developappropriate interventions with the aim of promoting physical, psychological and social well-being forthese children. Most importantly, it is crucial to help them develop a positive view of the impact that thecancer experience has upon their lives.

� 2012 Elsevier Ltd. All rights reserved.

Introduction

Recent advances in cancer treatment have resulted in anincrease in survival rates for childhood cancer (Li et al., 2010a; Stamet al., 2006). In Hong Kong, there are approximately 150 newlydiagnosed cases of childhood cancer each year. The incidence ofchildhood cancer is about 10 per 100,000 children (HospitalAuthority, 2009). According to the Children’s Cancer Foundation(2010), the chance of a cure for most types of leukemia is about70%, and more than 80% of Hong Kong childrenwith lymphoma arecured. Regrettably, a review of the literature reveals that a numberof childhood cancer survivors develop chronic health problems inearly adulthood, such as second malignancies, growth and endo-crine dysfunction, and serious organ toxicities (Hudson et al., 2003;

þ852 287260799.

All rights reserved.

Sharp et al., 2007). Langeveld et al. (2004) points out that bothchemotherapy and radiotherapy may have adverse effects onnormal body tissue, manifested months or even years after thecompletion of treatment.

Cancer and its treatments may not only adversely affect thephysical well-being of childhood cancer survivors, but theirpsychosocial well-being as well (Langeveld et al., 2004). Previousstudies indicate that radiotherapy, chemotherapy and surgicalintervention may have long-term effects on the psychosocial well-being of survivors, which include increased depression anddecreased self-esteem (Essen et al., 2000; Stam et al., 2006; Zeltzeret al., 2009). Previous studies from Western countries have foundthat survivors had higher levels of depression and lower self-esteem than healthy children (Essen et al., 2000; Michel et al.,2010; Recklitis et al., 2006; Servitzoglou et al., 2008). The findingsof these studies warrant special attention by healthcareprofessionals.

Page 2: The impact of cancer on the physical, psychological and social well-being of childhood cancer survivors

Table 1Demographic and clinical characteristics of the participants: total (n¼ 137) and sub-group for qualitative interview (n ¼ 15).

Frequency (%)

Total Sub-group

Age (yrs)9 17 (12.4) 2 (13.3)10 19 (13.9) 1 (6.8)11 19 (13.9) 3 (20.0)12 16 (11.7) 2 (13.3)

H.C.W. Li et al. / European Journal of Oncology Nursing 17 (2013) 214e219 215

Helping childhood cancer survivors maintain healthy physical,psychological and social well-being is one of the most vitalresponsibilities of healthcare professionals (Bradwell, 2009;Shepherd and Woodgate, 2010). Over the past decade, Westernstudies have focused on developing and evaluating differentpsychosocial interventions for childhood cancer survivors(Andersen et al., 2009; Hudson et al., 1998, 2002; Kazak, 2005).Interventions with cognitive, behavioral, psycho-educational, andbiological components showed beneficial effects on psycho-socialwell-being of childhood cancer survivors. Yet, a review of theliterature reveals that, so far, no similar study has been conductedin the Hong Kong Chinese context. Whilst most local studies ofchildhood cancer have focused on examining the experience,psychological well-being and quality of life of family members orcaregivers (Wills, 2009; Wong and Chan, 2006; Yiu and Twinn,2001), the impact of cancer, in particular the side effects of treat-ment on the psychosocial well-being of survivors remain relativelyunderexplored. Although children with cancer in Hong Kong willreceive regular medical follow-up after completing the entirecourse of treatment in a hospital, most attention has been focusedon medical issues or treatment outcomes. There is thus a compel-ling need for healthcare professionals in Hong Kong to providefollow-up for survivors of childhood cancer, in particular tomonitorthe side effects of treatment on their physical, psychological andsocial well-being. Most importantly, it is crucial to develop andevaluate appropriate interventions that can promote the physical,psychological and social well-being of such survivors and helpthem to live a healthier life. Before this can be achieved in HongKong, the impact of cancer and its treatments on the physical,psychological and social well-being of these survivors must be fullyunderstood. This study aimed to shed light on the impact of cancerand its treatments on the physical, psychological and social well-being of Hong Kong Chinese childhood cancer survivors. Theobjectives of this study were:

(1) To assess the self-esteem and depressive symptoms of HongKong Chinese childhood cancer survivors

(2) To compare the self-esteem and depressive symptoms betweenhealthy Hong Kong Chinese school children and childhoodcancer survivors

(3) To examine how the effects of cancer and its treatments affectchildhood cancer survivors’ physical, psychological and socialwell-being

13 16 (11.7) 3 (20.0)14 18 (13.1) 2 (13.3)15 17 (12.4) 0 (0)16 15 (10.9) 2 (13.3)SexMale 70 (51.1) 9 (60.0)Female 67 (48.9) 6 (40.0)DiagnosisLeukemia 78 (56.9) 7 (46.7)Lymphoma 30 (21.9) 3 (20.0)Brain tumor 13 (9.5) 2 (13.3)Osteoarcomas 10 (7.3) 2 (13.3)Kidney tumor 4 (2.9) 0 (0)Germ-cell tumor 2 (1.5) 1 (6.7)Types of treatment receivedSurgery 5 (3.6) 1 (6.7)Chemotherapy 66 (48.2) 7 (46.6))Bone Marrow Transplant 6 (4.4) 1 (6.7)Mixed method 60 (43.8) 6 (40.0)Time since treatment was completed6e12 months 61 (44.5) 8 (53.3)13e24 months 39 (28.4) 49 (26.7)25e36 months 23 (16.8) 2 (13.3)37e48 months 9 (6.6) 1 (6.7)48e60 months 3 (2.2) 0>60 months 2 (1.5) 0

Methods

A cross-sectional study was employed. Data collection wasconducted in one of the largest oncology outpatient clinics, locatedin an acute setting hospital in Hong Kong. There are around 150 to180 cancer survivors, aged 9e16 years old, having follow-up in thatclinic each year. A convenience sample of 137 childhood cancersurvivors was recruited during a 10-month period from 2010 to2011. The response rate was 93%, with 11 sets of parents choosingnot to participate (without giving specific reasons).

Sample

Hong Kong Chinese childhood cancer survivors going throughthe medical follow-up procedures at the out-patient clinic and whomet the study’s inclusion criteria were invited to participate in thestudy. The definition of childhood cancer survivors was childrenwho had been diagnosed with cancer and were now at a minimumsix-month stage after the completion of the entire course ofhospital treatment. The inclusion criteria were the following: (1)

Hong Kong Chinese childhood cancer survivors; (2) all childrenshould be aged 9e16 years; and (3) children should be able to speakCantonese and read Chinese. We excluded children with evidenceof second malignancies, and those with cognitive and learningproblems identified from their medical records. The demographicand clinical characteristics of the participants are shown in Table 1.

Another similar age group of healthy Hong Kong Chinese schoolchildren, originating from two previous studies (Li et al., 2010b,2010c) was used for comparison purposes. The sample of healthyschool children comprised of 245 primary school students aged9e12 (Li et al., 2010b) and 1555 secondary school students aged12e16 (Li et al., 2010c).

Measures

The Center for Epidemiologic Studies Depression Scale for Children(CES-DC)

The CES-DC comprises 20 fully standardized items to evaluatedepressive symptoms. The items consist of short and simplestatements in the first person about the emotional, cognitive andbehavior related components of depressiveness. All items areevaluated on a four-point Likert scale in relation to their incidenceduring the last week, which were scored from 0 to 3 (0 ¼ “not atall,” 1 ¼ “a lttle,” 2 ¼ “sometimes,” 3 ¼ “a lot”), with total possiblescores ranging from 0 to 60, with higher scores indicating greatersymptomatology. The cut-off point is fixed at 16. A score of 16 orgreater indicates an individual demonstrating some depressivesymptoms.

The psychometric properties of the Chinese version of the CES-DC have been empirically tested (Li et al., 2010b). The scale has goodinternal consistency, with a Cronbach alpha coefficient reported of0.82. Convergent validity was estimated by finding correlations

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H.C.W. Li et al. / European Journal of Oncology Nursing 17 (2013) 214e219216

between scores on the Chinese version of the CES-DC and stateanxiety scale for children. The results showed that there wasa strong positive correlation between the two scores (r ¼ 0.63).Discriminant validity was estimated by finding correlationsbetween scores on the Chinese version of the CES-DC and Rosen-berg’s Self-Esteem Scale. The results showed that there wasa strong negative correlation between the two scores (r ¼ �0.52).

Rosenberg’s Self-Esteem Scale (RSES)The RSES was designed to measure self-esteem as a global

disposition (Rosenberg, 1965) and has been widely used withadolescents (Byrne, 2000; Kim, 2003) and children (Phillips et al.,2008). The RSES consists of 10 items, an example being ‘I am ableto do things as well as most other people’. Responses are ratedusing a 4-point Likert scale ranging from 1 (strongly disagree) to 4(strongly agree), with total possible scores ranging from 10 to 40.Higher scores indicate higher levels of self-esteem.

The Chinese version of the RSES has been used with and chil-dren (Li et al., 2010b). The internal consistency of the Chineseversion of the RSES was good, with a Cronbach alpha coefficientreported of 0.84. Discriminant validity was estimated by findingcorrelations between scores on the Chinese version of the RSES andCES-DC. The results showed that there was a strong negativecorrelation between the two scores (r ¼�0.52). The results suggestthat the Chinese version of the RSES can be used as a self-reportassessment tool in measuring self-esteem of Chinese children.

Semi-structured interview

To obtain qualitative information about the impact of cancer andits treatment on the physical, psychological and social well-being ofchildhood cancer survivors, a one-to-one interview was conductedwith participants selected from the group. Because of children’sage-linked cognitive development, the impact of cancer and itstreatments on psychosocial well-being may be different in youngerand older children. Therefore, 8 childhood cancer survivors fromeach of the age group 8 to 12 and 13 to 16 were randomly selectedfor the qualitative interview. However, one participant from the13e16 year old age group could not be contacted prior to the homevisit despite several attempts and thus a total of 15 participantswere selected for the interview. The demographic and clinicalcharacteristics of this sub-group are shown in Table 1. The inter-views were semi-structured and audio-taped. An interview guidewas used, and questions asked were: Can you tell me your child-hood cancer experience? How does having had cancer impact yourlife now? During the interview, probing techniquewas used to elicitmore comprehensive information. Repetition of original questionand non-directive supplementary questions, such as “how is that?”or “why do you feel that way?” were used to encourage theparticipants to provide more detailed responses.

Data collection procedures

This study was approved by the Ethics Committee of theUniversity of Hong Kong and the hospital ethics committee.Written consent was obtained from the parents after theywere toldthe purpose of the study. They were given the option to participateor refuse their child’s involvement in the study. The children werealso invited to put their names on a special children’s assent formand told that their participation was voluntary.

Childhood cancer survivors who underwent medical follow-upin the out-patient clinic were invited to participate in the study.After collection of the demographic data, all participants wereasked to respond to the Chinese version of the CES-DC and RSES.

After collection of quantitative data for all participants, 15 fromthe group were randomly selected for a semi-structured interview,which was conducted at their home. Each interview lastedapproximately 30e45 min. To ensure the dependability and cred-ibility of the data, some strategies were used in this study. First, toensure the consistency in the conduct of interviews, a qualifiedresearch nurse with pediatric experience conducted the interviews.Second, to facilitate accurate interpretation of the data, field noteswere recorded during and after interviews. Because the validity ofdatamay be affected by children’s eagerness to please their parents,causing them to respond the way they think their parents wantthem to respond, parents were encouraged not to stay with theirchild during the interview.

Data analysis

The Statistical Package for Social Science (SPSS: Version 18; SPSSInc., Chicago, IL, USA) for Windows was used for quantitative dataanalysis. Descriptive statistics were used to calculate the mean,standard deviation, and range of the scores of the different scales. Atwo-way between-groups analysis of variance (ANOVA) was con-ducted to examine the mean differences of the depressive symp-toms and self-esteem of childhood cancer survivors and schoolchildren without cancer of the two age groups (9e12 and 13e16).According to Piaget (1963), children at the ages of 9e12 and13e16 are at the development stage of concrete operational andformal operational stages, respectively.

Content analysis was used to analyse the interview data.Content analysis is an objective and systematic procedure used todraw conclusions by creating categories of data from verbatim orunstructured data (Weber, 1990). After the interviews, therecording tape was immediately transcribed in Chinese and thentranslated into English by the research nurse. Transcription isa process that converts oral conversation into written form withdependability and credibility. The principal investigator reviewedthe transcriptions to ensure there were no omissions. Tworesearchers were then carefully conceptualized the categoriesaccording to the similarities of the dialogues. Subsequently, all thetranscribed interviews were sorted into different categories. Oncecategories were identified, the data were read in their entirety andcoded for correspondence to the categories. Two researchers werethen reviewed the codes. It was found that differences in codingprimarily arose from slight variations in the wording of statements.For further verification, peer debriefing was carried out. Peerdebriefing involves sessions with peers to review different aspectsof the inquiry. In this study, two nurse educators working inuniversity with experience in data analysis of structured interviewwere consulted to review the codes and examine meaning untilconsensus was reached.

Results

The results of the study showed that majority of the participants(78.8%) were diagnosed with leukemia and lymphoma. About half(44.5%) had completed the entire medical treatment within oneyear, with only two going on for more than five years. Resultsrevealed that 52.6% of the participants were at or above the CES-DScut-off of 16, indicating that, at least, they present some depressivesymptoms.

The mean scores on the CES-DC and RSES of childhood cancersurvivors and healthy school children are shown in Table 2. Theresults of two-way between-groups ANOVA are shown in Table 3.The results revealed that there were statistically significant differ-ences in mean CES-DC and RSES scores between the two groups,with childhood cancer survivors scored lower on mean RSES, but

Page 4: The impact of cancer on the physical, psychological and social well-being of childhood cancer survivors

Table 4A presentation of category and statements included in each category.

Category Sub-category Examples of statements

Physical Fatigue “After recovery, I need to sleep more thanbefore. I easily get tired.”

Memory loss “I need longer to pick up what others canpick up in an instant. My memory used tobe very good. It is much poorer now.”

Poor “My attention span has been to shorten,

Table 2Mean scores for the CES-DC and RSES of childhood cancer survivors and healthy school children listed by age groups.

Childhood cancer survivors Healthy school children

Aged 9e12 (n ¼ 71) Aged 13e16 (n ¼ 66) Total (n ¼ 137) Aged 9e12 (n ¼ 245) Aged 13e16 (n ¼ 1555) Total (n ¼ 1800)

M (SD) M (SD) M (SD) M (SD) M (SD) M (SD)

CES-DC 16.92 (7.97) 15.83 (7.88) 16.39 (7.91) 13.15 (9.61) 13.16 (10.66) 13.16 (10.53)RSES 24.99 (4.92) 26.56 (5.85) 25.74 (5.43) 27.96 (7.26) 27.82 (4.89) 27.84 (5.27)

CES-DC, the Center for Epidemiologic Studies Depression Scale for Children; RSES, the Rosenberg’s Self-Esteem Scale.

H.C.W. Li et al. / European Journal of Oncology Nursing 17 (2013) 214e219 217

higher on CES-DC. There was no statistically significant differencein mean CES-DC and RSES scores between the two age groups(9e12 and 13e16). The interaction effect (age and children groups)did not reach statistical significance, indicating that there was nosignificant difference in the effect of age on the depressive symp-toms and self-esteem for healthy school children and childhoodcancer survivors.

A short interview was conducted to 15 participants selectedfrom the group. Based on the method of content analysis, tran-scribed data were coded into four broad descriptive categories,physical, psychological, social and school dimensions. Categories,subcategories and quotations representing the central content ofeach category are presented in Table 4. In respect of the impact ofcancer on physical well-being, most of the children reported thatfatigue and poor concentration were their major concerns, manyinformants saying they easily felt tired evenwith adequate rest. Themost annoying issue related to a decreased attention span, whichcaused them learning difficulties at school and when studying athome. One survivor said: ‘I find difficulty in paying attention towhat I am doing. In the past, I could study 6 h per day. Afterrecovery, I am easily distracted by other things. I could hardlyconcentrate on my study.’ Similarly, another survivor said: ‘I amforgetting things so quickly and easily than before. Sometimes, Ihave to take time to recall of things that happened in the past.’

As for the psychological dimension, most informants reportedthat they are threatened by the possibility of cancer recurrence.One survivor stated: ‘I fear a cancer recurrence. Whenever theblood test showed some signs of recurrence, I would becomeparanoid. I could not bear another painful and threatening treat-ment procedure.’

As for the social dimension, most survivors commented thattheir social bonding was weakened. One informant claimed: ‘Afterremission, I feel the age gap between my classmates. The mainreason is that I haven’t hung out with them for a long time. Wecannot understand each other as we have different growing

Table 3The results of two-way between-groups analysis of variance on CES-DC and RSES ofchildhood cancer survivors and healthy school children listed by age groups.

Depressive symptoms (CES-DC) Self-esteem (RSES)

F-value p-value Etasquared

F-value p-value Etasquared

Main effectAge9e1213e16 0.32 0.57 <0.001 2.17 0.14 0.001ChildrenChildhood cancer

survivorsHealthy school

children11.36 0.01* 0.006 18.96 <0.01* 0.01

Interaction effectAge*Children 0.32 0.57 <0.001 3.10 0.08 0.002

CES-DC, the Center for Epidemiologic Studies Depression Scale for Children; RSES,the Rosenberg’s Self-Esteem Scale.*p < 0.05.

experience.’ Nevertheless, most informants reported that thefamily relationship was enhanced. One survivor said: ‘Afterremission, I take part in more activities withmy family. I feel deeplythat my parents love me.’

For the school dimensions, most survivors reported that therewas some impact on their academic performance after remissionand they have to pay extra efforts to keep up with their schoolwork.

Discussion

Despite the fact that cancer survival rates are higher than everbefore, childhood cancer survivors are at risk of adverse physicaland psychosocial effects of their treatment, severely damagingtheir psychosocial well-being. The aim of this study was to examinethe impact of cancer on the physical, psychological and social well-being of Hong Kong Chinese childhood cancer survivors, an area ofresearch that has been underrepresented in the literature.

The results of this study revealed that more than half of theparticipants were potentially at risk of depression, or at least pre-sented some depressive symptoms as measured by the CES-DC. Incomparisonwith previous studies (Li et al., 2010b, 2010c) using thesame scale to measure depressive symptoms and self-esteem ofa similar age group of Hong Kong Chinese school children withoutcancer, the results revealed that the mean depressive symptomscores of childhood cancer survivor were relatively higher than

concentration I was easily distracted than ever before.”Activityintolerance

“I was a member of a football team at school.Now, I am no longer able to join the teambecause of the decrease in physical strengthand endurance.”

Psychological Uncertainty “I know there is a possibility of recurrent.It’s hard to know when will happen as lifeis full of uncertainty.”

Fear “It has been a constant fear and worry becauseI don’t know when or whether the cancerwill come back or not.”

Lowerself-esteem

“I am not satisfied with my performance.I feel myself useless at times.”

Social Better familyrelationship

“After remission, I take part in more activitieswith my family. I feel deeply that my parentslove me. I find out only then that I had cancer.”

Weakeningsocial bonding

“I have lost some of my friends because I amno longer able to participate in some activitieswith my physical constraints.”

School Academicperformance

“The impact cancer had on me was on thelearning side. I had to make extra efforts inorder to catch up with my studies aftermy remission.”

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H.C.W. Li et al. / European Journal of Oncology Nursing 17 (2013) 214e219218

those of school children without cancer, while the mean self-esteem scores of the survivor group were lower, irrespective ofage. Findings indicated that despite different age-linked cognitivedevelopment in younger and older children, the impact of cancerand its treatments on their psychosocial well-being (depressivesymptoms and self-esteem) were similar. Nevertheless, the find-ings are consistent with previous studies from the West (Essenet al., 2000; Servitzoglou et al., 2008), showing that childhoodcancer survivors report greater symptomatology of depression andlower self-esteem than healthy children.

In childhood cancer survivors, feelings of depression may dragdown self-esteem and even bring a higher risk of suicidal tenden-cies (Recklitis et al., 2006). Although it cannot be assumed from thiscross-sectional study that there is a high risk of depression amongchildhood cancer survivors, many previous studies conducted inWestern countries have revealed that childhood cancer survivorsare at high risk of depression (Michel et al., 2010; Recklitis et al.,2006, 2010). For these reasons, the presentation of depressivesymptoms in such survivors cannot be overlooked or under-estimated. It is essential for healthcare professionals to detect andidentify childhood cancer survivors with depressive symptoms atan early point, and subsequently take appropriate interventionalsteps to promote their psychosocial well-being.

To explore further the impact of cancer and its treatment on thephysical, psychological and social well-being of childhood cancersurvivors, qualitative interviews were conducted to 15 participantsrandomly selected from the group. They were asked about theirexperience of cancer, in particular how the disease and its treat-ment had affected their daily life. For the impact of cancer onphysical well-being, fatigue, memory loss, poor concentration andactivity intolerance were the common issues reported by survivors.The results of the interviews were concurredwith previous survivalstudies that cancer and its treatments have a long term adverseeffects on survivors’ physical well-being (Hudson et al., 2003;Langeveld et al., 2004; Sharp et al., 2007).

As for the psychological dimension, the issues most frequentlytalked about by children in the interviews were uncertainty andfear. As there is no 100% guarantee that the cancer will not comeback, cancer recurrence and second malignancies becamea constant fear for the survivors. In the social dimension, owing tothe decrease in physical strength and endurance after remission,some children complained that they could no longer participate insome games as before. Additionally, because of their relatively lowbody resistance and high susceptibility to infection, many parentsdid not allow them near crowded public places, in particular duringthe seasonal outbreak of influenza, consequently affecting theirnormal social life and weakening social bonds. One of the rarepositive effects that the cancer experience had on their lives,however, was the enhancement of their family relationships. Mostchildhood cancer survivors reported that they gained morepsychological support and encouragement from their parents andsiblings, which made them feel they were not alone. Apart from theimpact of cancer and its treatment on the physical, psychologicaland social well-being, the issue most frequently talked by child-hood cancer survivors in the interviews was related to academicperformance in school. In Hong Kong, academic achievement hastraditionally been valued above other forms of achievement inChinese society (Li and Chung, 2009). This may be due to thecommon attitude, held by parents, and bymost of the students, thatacademic achievement is related to a better career and bright future(Li et al., 2010c). Given this issue, many informants reported thatthey were anxious about their academic performance, which theyclaimed was significantly affected by the cancer and its treatment.As a result of suspension from school during the course of treat-ment, a decreased attention span and excessive tiredness after

remission, they had to make extra efforts to catch up with theirstudies.

It is important to note that all participants in this study wereable to provide full responses to the questionnaires, withoutshowing any particular difficulty in understanding the questions.Indeed, all questionnaires are user-friendly in that they are easy tocomprehend and quick to completee it took around 20e25min foreach child to fill in all questionnaires.

Implications for practice

Childhood cancer survivors are at risk of adverse physical andpsychological and social effects of the cancer treatment, resultingfrom chemotherapy toxicities, radiation or secondary cancers. Theside effects may even last many years after completion of treat-ment, severely affecting children’s psychosocial well-being.Nevertheless, insufficient attention has been paid to the impact ofcancer and its treatment on the psychosocial well-being of child-hood cancer survivors in Hong Kong. According to theWorld HealthOrganization (1948), health has been defined as complete physical,mental and social well-being and notmerely the absence of disease.Additionally, with reference to the position statement on holisticcare as stated by the Hospital Authority in Hong Kong (2000),holistic care is defined as the care delivered to meet an integral,independent individual’s health needs including, physical,psychological and social aspects. Therefore, ensuring physicalpsychological and social well-being in childhood cancer survivorsshould be a prime concern of healthcare professionals. It is crucialfor nurses to plan, develop and evaluate interventions that canpromote physical and psychosocial well-being for childhood cancersurvivors. There is evidence of the relationship between low self-esteem and a higher rate of depression in children. Therefore,helping children to develop positive self-esteem can be one way ofpromoting their psychological well-being. Moreover, as self-esteemis moderately stable over time, it can be a useful indicator forscreening those children who may exhibit psychosocial distress orare at high risk of depression. On the other hand, this study revealsthat parents or family are the one who give most support to thechildhood cancer survivors, it is essential for nurses to educateparents on how to lead their child engage in a healthy lifestyle, suchas having eating properly and taking regular exercise. Mostimportantly, nurses should take one step forward to extend beyondtheir role in collaborating with education sectors and school socialworkers to provide psychosocial education and support to child-hood cancer survivors so that they can go on their journey withrenewed hope and faith.

Study limitations

The use of convenience sampling and all data were collected inone setting mean that the extent to which the results of this studycan be generalized is limited. Another limitation is that this studydid not report the socio-economic factors of the participants, whichmay have an effect on their experience. Moreover, participantgroup included children of varying time since cancer treatment wascompleted which might influence the results. Additionally, we didnot obtain information from parents on the psychosocial well-being of their children, which might have further enhanced ourunderstanding of the impact of childhood cancer and its treatmentson the survivors.

Conclusion

Despite its possible limitations, this study has addressed a gap inthe literature by examining the impact of cancer and its treatments

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H.C.W. Li et al. / European Journal of Oncology Nursing 17 (2013) 214e219 219

on the physical, psychological and social well-being of Hong KongChinese childhood cancer survivors. The study reveals that cancerand its treatments have a great impact on the physical, psycho-logical and social well-being of survivors. It is essential forhealthcare professionals to develop and evaluate appropriateinterventions with the aim of promoting physical, psychologicaland social well-being for these children. Most importantly, it iscrucial to help them develop a positive view of the impact that thecancer experience has upon their lives.

Conflict of interest

None declared.

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