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I
ude
s
HERCHES
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ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :1 N°1 /// PAGE 8/10
Rédactrice en chef et Directrice de PublicationDana Castro
Rédactrice adjointe
Marion Mouret
Comité de rédaction
Françoise BERTHIER
(Paris)
Charlotte COSTANTINO (Paris)
Nayla CHIDIAC
(Paris)
Véronique DONARD
(Paris)
Georges COGNET
(Paris)
Damien FOUQUES
(Paris)
Pierrette ESTINGOY
(Lyon)
Secrétaire de Rédaction Dominique STRAZZULA
Secrétaire de rédactions-correctrice
Marie-Louise LEGUERN
Secrétaire administrative de rédaction Axelle DAILLER-MARCHAND
Comité de lecture
Etudes et pratiques en psychologie
La revue du département recherche de l’école de psychologues praticiens
Les membres du comité de lecture sont désignés parmi les membres du comité de rédaction ou choisis parmi
des experts ad hoc. La lecture des textes est faite en aveugle.
Adresse de la rédaction Département Recherche EPP
23 rue du Montparnasse 75006 PARIS
Email : [email protected]
Etudes et pratiques en psychologique (ISSN - ) un an - 2 numéros
Edité en France par LEOS
Dépôt légal à parution ISSN : 2268-3100
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ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1
ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1
Editorial
The journal Etudes et Pratiques en Psychologie, has the great honor to introduce in this special issue the clinical work of Vietnamese psychologists with whom the Ecole de Psychologues Praticiens has been keenly
collaborating over the last three years.
It is an honor to publish their clinical research, as it is rich, informative and steady, a perfect illustration of
what Daniel Lagache cherished most : the unity of psychology and lets complete, its universality.
Psychology’s unity is strengthened by culture, which by its symbols, collective values and traditions, adjust
adequately the specific vision of human beings all over the world.
The universality of the human functioning expresses itself through the same problematics people who suffer have to overcome: abuse, stigma or mortal illness.
It also expresses itself in ways people cope with these issues by activating the same defense mechanisms
or by leaning on social support.
By reading the contributions of our Vietnamese colleagues we reach another conclusion: the scientific
method is universal and with the same tools (interview, questionnaires, etc.) has the power to create new
knowledge, describe new concepts and develop new practices.
Research based in the scientific method unites psychologists all over the world and in this way it testify of
psychology’s unity.
The present issue is carried out in the spirit of exchange and creativity. Its main aim is to enable western
psychologists discover some of the clinical concerns of their eastern colleagues, and by that promote debate, enrichment and why not new collaborations!
Dana Castro
Rédactrice en chef
Responsable Département Recherche Ecole de Psychologues Praticiens Paris/Lyon
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ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
Sommaire
Contents
Sommaire
Une mesure rapide d’évaluation des troubles du spectre autistique chez des enfants
à haut risque au Département de Psychologie de l’Hôpital pour Enfant n°1
Pham Minh Triet, Nguyen T. My Chau, Claude Sternis
doi : 10.17019/2015.EPP.3.5-03
La stigmatisation des patients déprimés présentant des symptômes somatiques
Ai Ngoc Phan
doi : 10.17019/2015.EPP.3.5-01
Les stratégies de « faire face » chez les enfants des rues, victimes d’abus sexuels
Lê Quang Nguyên
doi : 10.17019/2015.EPP.3.5-02
6
20
32
i 19
i 31
i 45
Stigmatization of depressed patients with somatic symptoms
Ai Ngoc Phan
doi : 10.17019/2015.EPP.3.5-01
Coping strategies of Vietnamese street children who have been victims of sexual abuse
Lê Quang Nguyên
doi : 10.17019/2015.EPP.3.5-02
6
i 19
20
i 31
32
i 45
46
i 63
Applying Adjuvent Psychological Therapy (APT) for Cancer Patients
Thi Uyen Phuong Tran
doi : 10.17019/2015.EPP.3.5.04
Proposer une thérapie psychologique aux patients atteints du cancer
Thi Uyen Phuong Tran
doi : 10.17019/2015.EPP.3.5.04
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6
Quick assessment of the risk of autism spectrum disorders among high-risk children in
the Psychology Department of Children’s Hospital 1
Pham Minh Triet, Nguyen T. My Chau, Claude Sternis
doi : 10.17019/2015.EPP.3.5-03
i 63
7
Une mesure rapide d’évaluation des troubles
du spectre autistique chez des enfants à
haut risque au Département de Psychologie
de l’Hôpital pour Enfant n°1
Quick assessment of the risk of autism
spectrum disorders among high-risk
children in the Psychology Department OF
Children’s Hospital 1
Pham Minh Triet, Nguyen T. My Chau, Claude Sternis
VOL :5 N°1 /// PAGE 6/19
Cette article est destiné à la recherche et à l'enseignement.
Il ne peut être utilisé dans un but commercial.
Doi:10.17019/2015.EPP.3.5-03
Pham Minh Triet, MD, MPH Head of Psychology DepartmentChildren's Hospital 1
Ho Chi Minh City, Vietnam
Tel: (84) 8 38 27 11 19.
Mobile: (84) 0903 35 35 13
[email protected]
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ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
ABSTRACT
ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
INTRODUCTION
Objective: The Vietnamese community has become increasingly concerned about Autism Spectrum Disorders (ASD) but professional resources are lacking. Indeed, a new form of assessment
is needed to properly evaluate this risk. The goal of this study was to evaluate two such tools: the
Modified Checklist for Autism in Toddlers (MCHAT) and the Social Attention and Communication Study (SACS). This evaluation helped us create a new tool designed to quickly and effectively assess the risk of ASD among high-risk children.
Methods: A total of 82 high-risk children were assessed for ASD by using the MCHAT combined
with the SACS for clinical observation. The diagnosis was then confirmed based on DSM-IV TR
criterion. Scores from the MCHAT were calculated and observations from the SACS were analyzed to create a shorter tool, named the Tool for Quick Assessment of Risk of Autism.
Results: The Tool for Quick Assessment of Risk of Autism was created by choosing 14 questions
from the MCHAT combined with clinical observations regarding 4 symptoms from the SACS.
The criteria chosen all had good psychometric properties. Some factors impacted the caregiver’s
assessment such as questionnaire structure and content; cultural differences; the caregiver’s psychological condition and education level.
Conclusion: The new tool (Tool for Quick Assessment of Risk of Autism) promises to shorten the
time to assess ASD in high-risk children.
Key words: autism, ASD, quick assessment, MCHAT, SACS, high-risk, sensitivity, specificity,
Positive Predictive Value (PPV).
RESUME
Objectif : La communauté vietnamienne est devenue de plus en plus préoccupée par les troubles
du spectre autistiques (TSA), mais les ressources professionnelles sont manquantes. En effet, de
nouvelles formes d'évaluation sont nécessaires pour évaluer correctement ce risque. L'objectif de
cette étude porte sur l'évaluation de eux de ces outils :the Modified Checklist for Autism in Toddlers (MCHAT) et le Social Attention and Communication Study (SACS).
Matériel et méthodes : un total de 82 enfants à haut risque pour des Troubles du spectre autistique
ont été évalués par le MCHAT et le SACS. Le diagnostic a été confirmé sur la base des critères
du DSM-IV. Les scores du MCHAT ont été calculés et les observations du SACS ont été analysées pour créer un outil d'évaluation plus court, intitulé Outil pour l'Evaluation Rapide du Risque
d'Autisme.
Résultats : L' Outil pour l'Evaluation Rapide du Risque d'Autisme a été crée à partir de 14 questions du MCHAT et de l'observation clinique issue de 4 symptômes du SACS. Les critères choisis
présentent tous de bonnes propriétés psychométriques. Certains facteurs impactent l'évaluation
de l'aidant tels que la structure du questionnaire et son contenu, les différences culturelles, l'état
psychologique de l'aidant et le niveau d'éducation.
Conclusion: Ce nouvel outil (Outil pour l'Evaluation Rapide du Risque d'Autisme) promet de
réduire le temps d'évaluation des enfants à haut risque de Troubles du Spectre Autistique.
Mots clefs : autism, troubles du spectre autistique, evaluation rapide, MCHAT, SACS, haut risqué, sensibilité, spécificité, Valeur Predictive Positive (VPP)
10
Recently there has been a growing interest for Autism Spectrum Disorder (ASD), a developmental disorder diagnosed in young children, in Vietnam. In Hanoi, the number of children diagnosed
with ASD at the National Hospital of Pediatrics in 2009 was four times greater than in 2007.
In 2012, in Ho Chi Minh City’s (CH1) Psychology Department at the Children’s hospital, the
number of diagnosed children increased six-fold compared to 2005. Moreover, the age of initial
diagnosis has decreased, from 4 years old in 2005 to 3 years old in 2010. There is currently a
three-month waiting list for assessment concerning developmental problems, which explains why
we need to find ways to speed up this process.
Several assessment tools for formal diagnosis of ASD are commonly recommended :
the Autism Diagnostic Interview–Revised (ADI-R), the Autism Diagnostic Observation Schedule–Generic (ADOSG), the Childhood Autism Rating Scale (CARS), the Gilliam Autism Rating
Scale (GARS), the Pervasive Developmental Disorder Screening Test (PDDST) Stages 2 and 3;
of which, ADI-R and ADOS are popularly considered “gold standard” instruments (Gupta, 2004;
Johnson & Myers, 2007; Zager, 2005). All of these instruments require extensive training and
experience as well as a one to two-hour assessment period. Needless to say, all of these tools
cannot be used during the first assessment step of such an overcrowded children’s department.
Aside from these formal diagnostic tools, quick assessment tools already exist, such as
the Autism Behavior Checklist (ABC), the Autism Screening Questionnaire (ASQ), the Pervasive
Developmental Disorder Screening Test (PDDST) Stage 1, the Social Communication Questionnaire (SCQ), the Screening Tool for Autism in Two-year-olds (STAT), the Checklist for Autism
in Toddlers (CHAT)(Gupta, 2004), and the Social Attention and Communication Study (SACS)
(Barbaro & Dissanayake, 2010).
Each of the 4 former tools has more than 40 items, requiring an assessment time that
is not compatible with our department. The STAT, for example, takes 20 minutes to administer
and has 15 items, which is too long. The CHAT seems applicable because of its simplicity but
does not have good specificity and sensitivity (cited Gupta, 2004), but it’s modified version, the
MCHAT, is popularly recommended and has promising results (Johnson & Myers, 2007; Zager,
2005).
The MCHAT, based on Baron Cohen, Allen and Gillberg’s Checklist for Autism in Toddlers (CHAT), is designed to screen the risk for ASD in children from 16 to 30 months of age
based on observation of their behavior. It is also recommended as a routine screening tool for
healthy children at specific ages. The checklist includes 23 “Yes”/“No” questions answered by
primary caregivers. If the child fails “2 out of the 6 risk items” or “any 3 items”, he is at risk for
ASD. The main purpose of the MCHAT is to identify at-risk children as soon as possible. Therefore, it is designed to have high sensitivity which means there will most probably be a certain
amount of false positives. To reduce this effect, a follow-up interview questionnaire was created
for the experts interviewing the caregivers about “failed” questions, to make sure that they understood and answered them correctly (Diana L. Robins, Deborah Fein, & Barton, 1999a, 1999b).
The MCHAT has been used in our department for years because of its advantages such as
simplicity, lack of cost, and preexisting Vietnamese translation. However, practical values of the
MCHAT have not been fully evaluated with respect to our environment. According to the authors
(Robins et al., 1999a), the MCHAT is a parent-report tool commonly used for general population,
while in our department, experts use it as a tool for interviewing and observing high-risk children.
Hence, this tool is not adapted to our assessment context and needs to be revised for use in a highrisk population.
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Robins and her team used the MCHAT to screen ASD in 1,293 children from 18 to 30
months of age (Diana L. Robins, Deborah Fein, Marianne L. Barton, & Green, 2001); 1,122 of
which were healthy children coming for a routine check-up at 18 months of age or 24 months. The
rest were sent from Early Intervention Centers. Cases which had significant scores after the first
two steps were assessed directly by experienced experts to make a diagnosis based on the DSM
IV - TR. Results showed that after Step 1, if the child “failed 2 risk questions”, the sensitivity was
95%, the specificity was 98%, the positive predictive value (PPV) was 64%. When applying the
“failed any 3 questions” criteria, values were 97%, 95%, and 36%, respectively. After step 2, the
results were 95%, 99%, and 79% for the former criteria, and 97%, 99%, and 68% for the latter.
Another study using the MCHAT to screen the risk for ASD in 6,600 children was carried out by Pandey et al. (2008). In this study, authors evaluated the PPV of the checklist when
applying it to children 16 to 24 months old (younger toddlers) and 24 – 30 months old (older
toddlers) as well as in low and high-risk groups. Evidence showed that the PPV in the low-risk,
younger group was 28% and 61% in the older group; while in high-risk group, these numbers
were 79% and 74%, respectively.
Kleinman et al. (2008) used this same tool to screen about 3,800 children aged 16 to 30
months, some of which were high risk. Nearly one third of these children were screened a second
time when they were 42 – 54 months of age. The PPV reported was 36% after step 1 and 74%
after step 2. The results did not differ greatly between the first and the second screening. In lowrisk groups, the PPV was 11% after step 1 and 65% after step 2. These results were higher in the
high-risk source: 60% and 76%, respectively. This study did not detail its findings concerning
sensitivity and specificity.
In China, Wong et al. studied children ranging from 18 to 78 months of age (Wong et al.,
2004). The study compared the MCHAT step 1 (caregivers self-evaluated their child) with the
observation of 4 clinical symptoms from the DSM-IV criteria. Results showed that the MCHAT
step 1 (failed 2 out of 7 key questions) had 93% sensitivity and 77% specificity while clinical
observation criteria (failed 2 out of 4 symptoms) had 73% sensitivity and 91% specificity. In
addition, authors also recommended revising this tool for it to be used in countries with a different
language or cultural context.
In a recent study carried out in Singapore (Koh et al., 2014), the values for the MCHAT
step 1 were evaluated by screening 580 high-risk children who were 18 – 48 months old. It revealed that among the 18 – 30 months age group, the MCHAT had 75% sensitivity with the “fail 2
key items” criteria and 89% with the “fail any 3 items” criteria, the specificity was 78% and 59%,
respectively, and the PPV was 61% and 49%. In the 30 to 48 months old age group, the criteria
“fail 2 key items” had 53% sensitivity, 92%, specificity and 78% PPV; while the criteria “fail any
3 items” had 76%, 72%, and 60%, respectively.
In Vietnam, Nguyen Thi Huong Giang and Tran Thu Ha used the MCHAT to screen 6,583
children aged 18 to 24 months in Thai Binh Province. The study revealed that the sensitivity and
specificity of the checklist were 74% and 99%, respectively (Giang, Ha, & Chau, 2009).
Contrary to the MCHAT that is primarily a mix of interview and self-assessment, the
SACS is a tool used by psychologists to screen ASD among children at the hospital for routine
health check at a primary care level. It is mostly based on the observation of abnormal social
behaviors and communication. The number of symptoms checked ranges from 10 to 16 depending on assessment age. The assessment is done when the child is 8, 12, 18, and 24 months of age.
Risk of ASD will be assessed based on key and extra items, as well as the age of the child. The
child is considered at risk of ASD when he fails 2 key items at 8 months, and 3 items when he is
more than one year old. Extra items are only monitored if the child is considered to be at risk.
Barbaro and Dissanayake (2010) administered the SACS to 20,770 children at primary
health organizations in Victoria, Australia. 11 to 15 symptoms were assessed depending on the
corresponding age group and approximately 240 nurses were trained for these specific assessments. Children who were considered at risk for ASD were referred to experts to confirm the
diagnosis. Evidence showed that the estimated sensitivity of SACS ranged from 69 to 84%, the
specificity ranged from 99.8 to 99.9%, and the PPV was 81% (Barbaro & Dissanayake, 2010).
This study also identified the most important items in the assessment of children aged 24 months
for ASD: pointing, eye contact, showing, and pretend play.
The MCHAT and SACS are easy to use and completed fairly quickly but are mostly used
in general population. The MCHAT is based on the caregiver’s report and is highly sensitive but
not specific enough, while the SACS mostly requires direct observation, making it highly specific but lacking in sensitivity. The idea of this study was to explore two questions: first, can the
MCHAT be used as a self – report inventory for caregivers given our conditions? Second, can we
create a tool that can help increase the speed of the assessment but still keep the number of false
negatives as low as possible, while using both the MCHAT and the SACS?
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METHOD
Participants
The study was carried out at Children’s Hospital 1, in their Psychology Department.
From January to March 2014, 82 children who were initially identified as having speech and/
or language disorders, developmental delays, (suspected) autism, and abnormal behaviors were
recruited.
Inclusive criteria:
• Children aged 18 to 48 months
• At least a 36 week gestation period
Exclusive criteria:
• Children in an emergency situation
• Children having already been in an intervention program for disabled
child for more than 2 months.
The mean age was 28.73 months (SD = 7.76), with children aged 16 to 46 months. More than 80%
of them were under 36 months of age. There were 82.9% of boys, and 17.1% girls. 61% of patients
came from Vietnamese provinces and the rest lived in districts of Ho Chi Minh City. The most
common complaint was language delays (87.8%), while (suspected) autism only represented 5%.
Among the 82 caregivers who answered the revised MCHAT, 68 of them were mothers (82.9%).
Nearly 9% of the MCHAT answerers had only primary school education; 25% had middle school
education; and approximately 38% had gone past high school.
About 88% of children (n = 72) had normal motor development and 12% presented delayed walking; while nearly 77% had language delays.
About 70% children were diagnosed with ASD (typical autism and autism Not Otherwise
Specified), while the rest were diagnosed with developmental delays or language disorders.
Measures
Interview: The MCHAT which was translated into Vietnamese by its authors and uploaded on the
official website (Robins).
Observation: Only 8 easy-to-perform items from the SACS were chosen: (1) pointing, (2) eye contact,
(3) waving, (4) pretend play, (5) turning to name call, (6) joint attention, (7) imitation, and (8) social smiling.
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ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
Procedure
A pilot study was carried out in order to revise the original translated MCHAT making it
more suitable to the local language and culture. Aside from changing some terms, we also changed the answer structure from Yes/No to a 4-point scale: Never, Seldom, Often, and Very often to
increase accuracy. We also asked caregivers to talk about their own feelings.
In the official study, 82 caregivers answered the MCHAT questions themselves. Then,
they were interviewed about failed items or items that were suspected to be incorrect. Next, the
examiner clinically assessed the child based on chosen SACS items. Finally, the child was evaluated comprehensively to confirm diagnosis based on DSM-IV TR criteria.
Data analysis
SPSS software version 20.0 and Excel 2010 were used for analysis. The sensitivity, specificity, and PPV were calculated step by step: (i) caregivers’ self-evaluation, (ii) expert’s follow-up
interview, and (iii) expert’s observation using SACS symptoms.
Using these results, key questions and symptoms were chosen to make a new tool that
could help reduce assessment time. The sensitivity, specificity, and PPV of this tool were also
calculated to choose the best cut-off point for each assessment step.
Informed consent and ethics committee approval
The study was approved by the Institutional Review Board of Children’s Hospital 1, Ho Chi Minh
City, Vietnam. A caregiver’s consent form was obtained before interviews.
RESULTS
Caregiver’s ability to complete MCHAT without assistance
Stratification of places of residence showed that among caregivers who lived in provinces, there
were still statistical differences concerning the ability to complete the test because of education
level (table 2). This means a level of education under sixth grade was a factor that negatively
affected the ability to fill out the assessment.
Table 2: Comparison of level of education of caregivers and the ability to complete revised
MCHAT
Identification of key questions
Because only 25% of caregivers could complete the MCHAT alone, identification of key
questions had to be based on interview results. As we can see in table 3, more than 50% of caregivers answered “abnormal” to 14 questions including 2, 5, 6, 7, 8 9, 10, 13, 14, 15, 17, 19, 21 and
23. Furthermore, most of these questions could help differentiate autistic children and non-autistic
children because they had a P- value <0.05 (except questions 4, 5 and 9).
Table 3: Comparison of abnormal items between ASD and Non-ASD children based on
caregivers’ interviews
Of the 82 caregivers in the study, only 22 (26.83%) could answer all 23 questions, 7
were not able to answer any of the checklist questions (8.54%) and the rest were able to answer
more than half of the checklist (more than 12 questions).
Epidemiology factors significantly affected the caregivers’ ability to complete the
MCHAT on their own. Besides those who could not read and write, those who had an education
level under sixth grade could not complete the checklist either. Also, caregivers who lived in
provinces had more difficulty during the assessment than those from Ho Chi Minh City. Table 1
shows that there were statistical differences in the caregivers’ ability to complete the test alone
depending upon education level and place of residence.
Table 1: Epidemiology factors affecting the caregivers’ ability to complete the revised
MCHAT
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Identification of key observation symptoms
Based on clinical observations, we found that the most common abnormal symptoms
were weak eye contact (87%), no pretend play (79%), and no pointing with pointer finger (77%),
while no social smile was the least common symptom (58%). Be that as it may, all of the 8 SACS
symptoms can help differentiate autism from non-autism symptoms, as proven by P-values <
0.05.
ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
We also chose 8 SACS symptoms from the clinical observation to identify the most appropriate
way to proceed in clinical practice (see table 4 for clinical symptoms, their frequencies). We
worked step by step for each observation based on frequency, removing the least frequent symptom each time. The sensitivity, specificity, and PPV by cut-off criteria were calculated for each
step.
Table 6: Values of new checklist by number of observed symptoms and criteria
Table 4: Comparison of abnormal items between ASD and Non-ASD children based on clinical observations
Optimal cut-off point for differentiation of autism versus non-autism
After data analysis, we decided to choose 14 questions to which more than 50% of caregivers answered “abnormal” to find the optimal cut-off point. The sensitivity, specificity, and PPV
of cut-off criteria were calculated and presented in table 5.
Table 5: Values of 14 - question – MCHAT by criteria
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DISCUSSION
Can the MCHAT be used as a self – report questionnaire for caregivers?
The results showed that the MCHAT was hard to put into place given our conditions.
First, the ability to complete the MCHAT alone was limited. The pilot study showed
that we needed to change words and restructure the questionnaire before using it in our cultural
context, as similar studies had shown before (Koh et al., 2014 and Wong et al., 2004). Despite
this effort, only 26.83% of caregivers were able to answer all 23 questions. This result was much
lower than in Koh et al.’s study in Singapore (56.3%).
Secondly, data analysis showed that education levels and place of residence significantly
affected the caregivers’ ability to complete the MCHAT. Caregivers who had a level of education
under grade 6 and/or lived in provinces often struggled with the assessment process. We should
bear in mind that in this study, more than 60% of patients came from provinces. Therefore, using
the MCHAT as a self-report inventory may not be ideal.
Last but not least, asking caregivers about their feelings in the pilot study seemed to show
that psychological issues might affect the accuracy of each answer. Fear of having an autistic
child could explain why caregivers provided false information to the researcher. Directly observing caregivers interacting with their child revealed differences between what caregivers had
stated and how their child actually behaved. They seemed to have trouble recognizing that certain
characteristics were linked to autism: “I agree that my kid is not the same as other kids but I do
not think that he is like autistic children. I read that children with autism do not play with others,
but my child does ...”, “When I ask him to do that at home, he does it immediately. Perhaps he is
afraid of the doctor and that is why he isn’t listening... I do not think that my kid is autistic”. This
denial helps protect caregivers from the psychological trauma that is brought on by such a diagnosis. This kind of behavior is also mentioned in detail on popular websites about autism ("Autism
& Your Family," ; "Living with autism,"). Also, caregivers’ reactions were similar to what has
been described in the famous Klubler Ross model concerning the 5 stages of grief: denial, anger,
bargaining, depression, and acceptance (Ross, 1997); of which, denial is often the first psychological manifestation when a person receives unexpected bad news.
Although the MCHAT was revised, there are still many challenges that prevent it from being used
as a self-report tool for caregivers in our conditions.
Can we create a tool that combines parts of the MCHAT and
the SACS for quick assessment?
Our new tool includes 14 MCHAT questions for the interview and 4 SACS symptoms
for observation with criteria considered abnormal « if 2 of any questions/symptoms” are failed.
This combination makes the tool easier to use by reducing quantity of items as well as by using
only one cut-off. Result analysis showed that this tool had 97% sensitivity, 47% specificity, and
86% PPV when interviewing caregivers and 89% sensitivity, 79% specificity, and 93% PPV when
observing clinically symptoms.
Concerning the interview component, our tool achieved higher sensitivity but lower specificity than that of the Koh and Wong study. Indeed, in this study, (Koh et al., 2014), sensitivity
was at 94% for the “abnormal at 3/23 questions failed” criteria, 76% for “abnormal at 2/6 key
questions” failed criteria, and 81% for “2/7 best questions failed” criteria if administered to children under 30 months of age. Those numbers were lower when considering children aged 30 to 48
months. The Chinese study (Wong et al., 2004) showed that sensitivity was 84% for the “abnormal at 6/23 questions failed” criteria, and 93% for “abnormal at 2/7 best questions failed”. The
specificity in the Koh study ranged from 59% to 90% depending on criteria and age group. In the
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Wong study, specificity was at 77% for “abnormal at 6/23 questions” criteria, and 85% for “abnormal
at 2/7 best questions” criteria. Furthermore, PPV of our tool was higher than any criteria Koh’s (49% 75%) and Wong’s (74% - 79%) studies.
For the observation part, we used 4 key symptoms for assessment: eye contact, pointing, response to name call, and pretend play while Wong et al. (2004) chose eye contact, pointing, pretend play,
and gaze monitoring. We both applied “abnormal when 2/4 symptoms” criteria to identify a risk for
ASD. Our tool achieved higher sensitivity and PPV but lower specificity than those of the Wong study
(74%, 91%, and 85%). Compared to the Australian SACS study (Josephine Barbaro & Dissanayake,
2010) which assessed more than 10 symptoms and had 69 – 84% sensitivity, 99.9% specificity, and
81% PPV, our tool had lower specificity but higher sensitivity and PPV and assessed fewer symptoms.
In conclusion, the new tool that was created by reducing the number of MCHAT questions
and assessing only 4 clinical symptoms from the SACS helped increase the speed of assessment while
achieving acceptable sensitivity and specificity.
Limitations
We do not yet know if this tool can be used in conditions that are unlike those of our department. Although the study proved that it could help reduce time for assessing autistic risk among highrisk children in the Psychology Department of Children’s Hospital 1, there are still other issues that
must be considered thoroughly before it can be applied elsewhere.
This study was implemented in Children’s Hospital 1, a tertiary pediatric hospital and one of
the very few hospitals that are capable of assessing autistic children in the south of Vietnam; therefore,
prevalence of the disease is much higher than in other hospitals and in the community. This high prevalence could explain the PPV in this study, which is higher than that of other studies. It is also important
to note that there has been no official report about the prevalence of autism in Vietnam as of yet.
Also, because of the small study sample size, the values of this new tool could not be categorized by age group as in other studies.
Conclusion
The study showed that using the MCHAT as a self – report questionnaire for caregivers were not suitable, especially if they came from provinces and/or if they only had a primary school education. It is
also important to consider adapting the questionnaire structure to the cultural context and caregiver’s
psychological conditions.
The new tool included 14 MCHAT questions and 4 SACS observation symptoms that demonstrated promising values. Using the criteria “abnormal if 2/14 items failed” had sensitivity, specificity,
and PPV of 97%, 47%, and 86%, respectively, while the “abnormal if 2/4 observation symptoms”
criteria had 89% sensitivity, 79% specificity, and 93% PPV.
Because it would be difficult to use the MCHAT as a self – report tool for caregivers, we used this new
tool to interview them and observe the child directly. When the child presented abnormal criteria, he
was sent to another doctor to confirm the diagnosis and to begin an early intervention program with
special educators at the same time.
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These promising results need to be generalized, so it is important that this tool be applied
and routinely evaluated in other settings that have similar conditions. Also, caregivers’ psychological conditions when the risk of autism is being assessed for their child can affect the accuracy
of the test results, and this impact needs more research to be fully understood.
/// Bibliography
CONFLICT OF INTEREST
APA. (2000). Diagnostic and Statistical Manual of Mental Disorder, Fourth Edition, Text Revision Washington, DC: American
Psychiatric Association.
APA. (2013). Diagnostic and Statistical Manual of Mental Disorder, Fifth Edition Washington, DC: American Psychiatric Association.
Autism & Your Family.). Retrieved November 25, 2013, from http://www.autismspeaks.org/what-autism/autism-your-family
Autistic children in Vietnam need more helps.). Retrieved April 28th, 2013, from http://www.disabilitynewsasia.com/home-mainmenu-1/285-autistic-children-in-vietnam-need-more-help.html
Barbaro, Josephine, & Dissanayake, Cheryl. (2010). Prospective Identification of Autism Spectrum Disorders in Infancy and
Toddlerhood Using Developmental Surveillance: The Social Attention and Communication Study. . Journal of Developmental &
Behavioural Pediatrics, 31, 376 –385.
Diana L. Robins, Deborah Fein, & Barton, Marianne L. (1999a). Instructions and Permissions for Use of the M-CHAT™. Retrieved February 15, 2013, from www.firstsigns.org
Diana L. Robins, Deborah Fein, & Barton, Marianne L. (1999b). Modified Checklist for Autism in Toddlers (M-CHAT) Follow-Up
Interview™. Retrieved Februay 15, 2013, from http://www2.gsu.edu/~psydlr
Diana L. Robins, Deborah Fein, Marianne L. Barton, & Green, James A. (2001). Modified Checklist for Autism in Toddlers: an initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental
Disorders, 31(2), 131-144. doi: 0162-3257/01/0400-0131
Frances, Allen. (2009). Whither DSM–V? The British Journal of Psychiatry, 195, 391-392. doi: 10.1192/bjp.bp.109.073932
Frist, Michael B. (2009). Harmonisation of ICD–11 and DSM–V: opportunities and challenges. The British Journal of Psychiatry,
195, 382-390. doi: 10.1192/bjp.bp.108.060822
Giang, Nguyen T.H., Ha, Tran T.T., & Chau, Cao M. (2009). Nghiên cứu phát hiện sớm tự kỷ bằng bảng kiểm sàng lọc tự kỷ ở trẻ
nhỏ (MCHAT-23).
Gupta, Vidya Bhushan (Ed.). (2004). Autistic Spectrum Disorders in Children. New York, U.S.A.: Marcel Dekker, Inc.
Jamie M. Kleinman, Diana L. Robins, Pamela E. Ventola, Juhi Pandey, Hilary C. Boorstein, Emma L. Esser, . . . Fein, Deborah.
(2008). The Modified Checklist for Autism in Toddlers: A follow-up study investigating the early detection of autism spectrum
disorders. Journal of Autism and Developmental Disorders, 38, 17. doi: 10.1007/s10803-007-0450-9
Johnson, Chris P., & Myers, Scott M. (2007). Identification and Evaluation of Children With Autism Spectrum Disorders. Pediatrics.
doi: 10.1542/peds.2007-2361
Josephine Barbaro, & Dissanayake, Cheryl. (2010). Prospective Identification of Autism Spectrum Disorders in Infancy and Toddlerhood Using Developmental Surveillance: The Social Attention and Communication Study. Journal of Developmental & Behavioural Pediatrics, 31, 376 –385.
Josephine Barbaro, & Dissanayake, Cheryl. (2012). Early markers of autism spectrum disorders in infants and toddlers prospectively
identified in the Social Attention and Communication Study. Autism, 17(1), 64–86. doi: 10.1177/1362361312442597
Juhi Pandey, Alyssa Verbalis, Diana L. Robins, Hilary Boorstein, Ami Klin, Tammy Babitz, . . . Fein, Deborah. (2008). Screening for autism in older and younger toddlers with the Modified Checklist for Autism in Toddlers. Autism, 12(5), 513-535. doi:
10.1177/1362361308094503
Koh, H. C., Lim, S. H., Chan, G. J., Lin, M. B., Lim, H. H., Choo, S. H., & Magiati, I. (2014). The clinical utility of the modified
checklist for autism in toddlers with high risk 18-48 month old children in singapore. J Autism Dev Disord, 44(2), 405-416. doi:
10.1007/s10803-013-1880-1
Living with autism.). Retrieved November 20, 2013, from http://www.autism-society.org/living-with-autism/
Nguyễn Thị Hương Giang, Trần Thị Thu Hà, & Châu, Cao Minh. (2009). Nghiên cứu phát hiện sớm tự kỷ bằng bảng kiểm sàng lọc
tự kỷ ở trẻ nhỏ (MCHAT-23).
Robins, Diana L., 2013 December 30). MCHAT. Retrieved December 30, 2013, from http://www2.gsu.edu/~psydlr/M-CHAT/
Official_M-CHAT_Website_files/M-CHAT_Vietnamese.pdf
Ross, Elisabeth Kubler. (1997). On Death and Dying. U.S.A: Simon & Schuster Inc.
Wong, V., Hui, L. H., Lee, W. C., Leung, L. S., Ho, P. K., Lau, W. L., . . . Chung, B. (2004). A modified screening tool for autism
(Checklist for Autism in Toddlers [CHAT-23]) for Chinese children. Pediatrics, 114(2), e166-176.
Zager, Dianne (Ed.). (2005). Austism spectrum disorders: identification, education, and treatment (3 ed.). Jersey, U.S.A: Lawrence
Erlbaum Associates Inc.
There was no conflict of interest for the authors, including any financial, personal or other relationships with people or organizations that could inappropriately influence the study results.
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La stigmatisation des patients déprimés présentant
des symptômes somatiques
Stigmatization of depressed patients
with somatic symptoms
VOL :5 N°1 /// PAGE 20/31
Ai Ngoc Phan
Cette article est destiné à la recherche et à l'enseignement.
Il ne peut être utilisé dans un but commercial.
Doi:10.17019/2015.EPP.3.5-01
Medical and Pharmacy University, Ho Chi Minh city, Viet Nam
218A Minh Phung, District 11, Ho Chi Minh city, Viet Nam
Email: [email protected] or [email protected]
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Abstract:
The goal of this study was to examine the stigmatization of depressed patients presenting somatic symptoms
that were linked to their mental illness. Using semi-directive interviews, we tried to determine the extent of
this stigma and how it influenced choices concerning treatment, compliance, and patients’ daily interactions.
Although conducted on a small group of young patients (6), we found that despite having knowledge about
depression and its treatment, many patients felt stigmatized, which considerably delayed appropriate medical
examinations. It also affected each patient’s choice of treatment method and generated a lack of compliance once
treatment had begun.
ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
times irrational, fears about being different and going through unfamiliar experiences that they are unable
to control.
Key words: stigma, mental illness, depressed patients with somatic symptoms
Mental illness is very often stigmatized, especially when dealing with psychosis. Indeed, we are constantly
faced with false images in movies and the news that promote erroneous ideas about psychiatric issues. A
Chinese study spent ten years, from 1990 to 2000, interviewing schizophrenic patients and their families,
and showed that stigma interfered in areas such as rehabilitation, support, fear of being discriminated
against and quality of life (Phillips, 2002). Other studies have shown that stigma affects choice of treatment
(Jane L. Givens, 2007). This is true in Vietnam, where patients would rather choose traditional medicine
(herbal, remedies, holy water, exorcisms) rather than see a mental health specialist and take psychotropic
medication. Stigma and the fear of being discriminated against, especially when they co-exist, exacerbate
depressive symptoms and delay the treatment process (Freidl M, 2008).
Résumé :
Some researchers have tried to study stigma even further, attempting to list and categorize thoughts concerning societal and internalized stigma about mental illness (Assefa D, 2002 ; Ritsher, 2003 ; Watson AC,
2007), and even developing a scale to assist in research and clinical practice (Watson AC, 2007).
L’objectif de cette étude était l’examen du phénomène de stigmatisation chez des patients dépressifs présentant
des symptômes somatiques en lien avec leur trouble de l’humeur. A travers des entretiens semi-directifs, nous
avons essayé de déterminer l’importance de la stigmatisation ainsi que son influence sur les choix thérapeutiques, l’adhésion au traitement et les interactions quotidiennes de ces patients. Malgré le faible échantillon composé de 6 jeunes patients, nous avons trouvé qu’en dépit de la connaissance de la maladie dépressive, l’ensemble
des patients ressentait la stigmatisation ce qui retardait considérablement le choix de la méthode de traitement et
entaché l’adhésion thérapeutique une fois le traitement commencé.
Mots clefs : stigmatisation, maladie mentale, patients déprimés avec des symptômes somatiques.
In Vietnam, no such research is under way. The situation is quite paradoxical because psychotic or depressed
patients are stigmatized but also receive quite a lot of sympathy. Despite this initial kindness and concern,
patients tend to lay low and keep their condition secret. Meanwhile, the number of patients suffering from
depression is increasing, especially young patients, and they are left untreated.
The goal of this study is to better understand depressed patients with somatic symptoms and ho
METHOD
Participants
INTRODUCTION
Goffman described stigma as so-called “bad” characteristics that are not accepted by society or must be
eliminated (Corrigan, 1988; Goffman, 1963; Wahl, 1995; Wahl & Harman, 1989). Stigma often plays an
important role in mental illness, whether patients feel it comes from outsiders or whether it is already internalized. Some researchers have even developed scales to allow its evaluation: Revised Perceived Devaluation Discrimination Scale-Depression, Revised Internalized Stigma of Mental Illness Scale-Depression,
and Attitudes Towards Mental Health Treatment-Depression (Charlotte Brown, 2010).
Such scales have not yet been translated and adapted in Vietnam. In fact, few studies have begged the
question of stigma related to mental illness in this country. Vietnamese psychologists tend to overlook stigma-related symptoms, believing them to be manifestations of the primary illness. Today, patients are able
to learn more about their disorders via internet, but this knowledge does not protect them from all forms
of stigmatization.
LITERATURE REVIEW
Depression is one of the most common mental illnesses. Indeed, according to the World Health Organization (WHO 54th world health assembly, 2001), depression will have become the second cause of death
after cardiac disease in 2020. In Ho Chi Minh City, 3 to 5% of the population is affected by this problem,
and 600 to 700 psychiatric outpatients are treated at Ho Chi Minh City Mental hospital every day. Although
knowledge about this disease is widespread, only 25% of patients are diagnosed and treated appropriately
(WHO, 54th world health assembly, 2001), and this low percentage may be related to stigma.
Stigma can be external or internal. Indeed, patients can feel stigmatized when in contact with people who
lack knowledge about their illness and who are not understanding but they can also have their own, some-
24
There were 6 patients in total, 2 of which were male and 4 female. They were aged 25 to 35 years old and
generally had a stable financial situation. They were patients that had been admitted to Nguyen Tri Phuong
hospital for the first time for treatment because of somatic symptoms (such as insomnia, exhaustion, pain,
etc…). They were all diagnosed with depression there (F32.0, F32.1, F32.2 according to ICD-10) by a
psychiatrist.
Measures
Each patient completed the Beck Depression inventory (BDI) and an in-depth questionnaire. The questionnaire was based on two studies: Stigma and expressed emotion: a study of people with schizophrenia
and their family members in China (Phillips, 2002) and Internalized stigma of mental illness: psychometric properties of a new measure (Ritsher, 2003). This lasted for two 30 – 45 minutes sessions and the
following topics were touched upon:
•
Administration information, history of patient's illness and treatment, history of mental health in
patient’s family
•
Understanding of patient about their depression disorder, cause of depression, how treatment works
in the hopes of detecting internal stigma
•
Understanding response and behavior of family, friends, colleagues, and other relationships in the
patient’s life to detect external stigma
•
The influence of the stigma and fear of discrimination on patient’s daily life
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ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
Procedure
Before beginning this research, permission was obtained from the medical survey council in Nguyen Tri
Phuong Hospital. Each patient signed a consent form before participating.
All interview sessions were set up in an office where it was possible to meet each patient one on one. Each
interview was recorded and remained completely confidential. A summary of the results was sent to patients
who requested it.
RESULTS
The goal of this research was to use these case studies to identify what patients believed others thought of
them. We thought they would believe that mental illness could entail going crazy, doing harm to others, difficulty talking and understanding, unpredictable behavior and no hope of recovery. We believed that those
ideas would explain patients’ reticence to talk about their mental health and seek treatment, or comply to
treatment that was underway. We also wanted to show that this stigma made patients opt for Oriental medicine to avoid consulting with doctors.
It was also interesting to compare each patient to see what differences existed concerning thoughts, emotions and behavior related to perceived stigma. We also tried to identify their main defense mechanisms and
their expectations about treatment.
tab 1 / Annexe
Note:
+ married or in a relationship; ++: has children
Age column: m: male, f: female. * has religious beliefs
Education/Career column: B: bachelors. W: worker. OW: office staff. Mn: Manager
Beck Scale: /S: suicidal ideation
Time: time interval from onset of symptoms to the examination in psychiatric department
Reason: GP: general practitioner
Table 2:
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an important role in the family. This could also be understood as a positive intention, that is to say a way to give
them time and space to recover, but to patients this always hurt their self-esteem and made them feel worthless.
5. Self–perception
DISCUSSION
1. Viewpoints on depression
Almost all participants believed depression to be a disease of the “spirit”, a bad omen concerning mental
health. In its most severe form, they believed depression could be considered “a mental illness”.
The group that was studied had a similar viewpoint to those from studies on stigma in China (Phillips, 2002)
and in London, England (Crisp, 2000). Mental illness was described by all participants as madness, mental
retardation, loss of cognitive abilities, and strange behaviors and emotions. They also mentioned that this
illness could cause patients to injure themselves and others. Most thought that recovery was impossible and
that lifelong treatment would be necessary making them isolated as a consequence.
They believed that a mental hospital was an unpleasant place for treatment, filled with patients that could
not control themselves and needed to be restrained by medical staff. They often have such beliefs because
people had been treated in their family before them, which is why people with family history were often
the last to seek treatment.
2. Choice of treatment methods
Most patients decided to treat their somatic symptoms first, by using drugs prescribed by pharmacists and Oriental herb remedies. Even those who took the appropriate psychotropic medication often used
alternative medicine anyway. In some cases, patients discontinued their treatment and solely used Oriental
medicine or found salvation in religion. As Givens (2007) showed in her study, choice of treatment method
is always influenced by the patient’s state of mind and beliefs.
Most patients believed that medication would alleviate physical symptoms but did not believe that
it could heal their trauma, sorrow or obsessive thoughts. This led many patients to believe that they could
not recover.
The statements of depressed patients were partially influenced by the disease, and partially affected by the stigmatization from their families, the surrounding environment and the fear of being stigmatized. Their statements reflected a complex inner world. Although Vietnamese culture is quite different,
much of what they said was similar to the list of phrases showing internalized stigma of mental illness in
the American research (Ritsher, 2003). There are, specifically, such statements as “feeling out of place in
the world”, "perceived discrimination", the feeling of "not wanting to talk much about myself because it is
a burden to others", etc.
6. Compliance to treatment
The results of this study have not clearly shown whether or not stigmatization and the fear of
being discriminated against have an influence on the pursuit of treatment. In two cases, patients abandoned
their scheduled drug treatments and switched to other options, including changes in living environment
or spiritual alternatives. It seems that drug treatments did not completely satisfy patients’ needs. From the
beginning, these patients all affirmed their illness could not be treated by drugs. More often than not, they
were more worried about side effects and were afraid of feeling abnormal or foolish. In the acceptance
process, patients were stuck in a stage of denial, anger or bargaining (Kubler-Ross).
LIMITATIONS
This qualitative study presented several limitations. Indeed the research was conducted on a very small
sample of young patients, and the male to female ratio was not balanced (4 women, 2 men).
Because this sample is not representative of the population, these results cannot be generalized but give a
glimpse into the treatment of depressed patients in a Vietnamese context.
3. Sharing about their condition
Similarly to the results from the British study, patients rarely shared their feelings for fear of being overwhelmed or faced with lack of empathy (Crisp, 2000). In our study, we also found that participants feared
poor job evaluations and stigmatization in the workplace which could keep them from being promoted.
Goffman’s (1998) and Link & Phelan’s (2001) studies touched upon this idea.
Interestingly, some people in the research group refused to share their depressed thoughts for fear of “infecting” others. Some described depression as a sensitive state in which they were spiritually weak, and so to
protect themselves they chose to keep their illness secret to avoid being taken advantage of. On the contrary,
some women chose to share so as to be protected.
4. Origins of the disease: patient and family viewpoints differ
The patients in this study all understood that their illness was caused by a combination of factors, such as personal
characteristics, family context and social environment. All of them emphasized that family had played a very
important role in the development of their depression.
Most families, on the other hand, believed that depression came solely from the patients’ own personality traits,
their way of thinking and their distorted feelings. It is worth noting that physical causes were not addressed.
Explanations related to religion were also not brought up.
Conclusion
Interestingly, we found that despite having prior knowledge about depression, all patients feared stigmatization from their family and the community. Unfortunately, this fear considerably delayed appropriate medical examinations. It also affected patients in their choice of treatment methods (Oriental medicine, herbs
remedies) and negatively affected compliance in the treatment process. In addition, all patients believed
that their families played a major role in the development of their mental health problem. Thus, they believed that treatment could perhaps alleviate physical symptoms but would not heal their sadness and trauma.
Albeit from a small study presenting several limitations, hopefully these conclusions will be a foundation
for further future studies. These studies should continue to explore the stigmatization of depression, somatoform disorders and how stigma affects quality of treatment and quality of life. They will help patients
gradually accept their illness but will also help clinicians to better pay attention to stigmatization as an
important factor, which influences the severity of certain symptoms and the efficacy of treatment. Better
understanding this phenomenon with positively affect the quality of therapeutic relationship, one of the
decisive factors in the treatment process.
Once they found out that their family member was diagnosed with depression, most families changed their
expectations for them and no longer positively evaluated their abilities. They no longer relied on them to play
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/// Bibliography
ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
tab 1 / Annexe
Assefa D, Shibre T, Asher L, Fekadu A (2012). Internalized stigma among patients with schizophrenia in Ethiopia: a cross-sectional
facility-based study. Amanuel Specialized Mental Hospital, Addis Ababa, Ethiopia (BMC Psychiatry. 2012 Dec 29;12:239. doi:
10.1186/1471-244X-12-239).
Arthur H.Crisp, Micheal G.Gelder, Susannah Rix, Howard L. Metzer and Olwen J. Rowlands. (2000). Stigmatisation of people with
mental illness. London.
Charlotte Brown, Kyaien O. Conner, Valire Carr Copeland, Nancy Grote, Scott Beach, Deena Battista, Charles F. Reynolds III
(2010). Depression stigma, race, and treatment seeking behavior and attitudes. NIH Public Access; Published in final edited form
as:J Community Psychol. 2010 April ; 38(3): 350–368. doi:10.1002/jcop.20368.
Freidl M, Piralic Spitzl S, Aigner M (2008). How depressive symptoms correlate with stigma perception of mental illness, Int Rev
Psychiatry. 2008 Dec
Link BG, Mirotznik J, Cullen FT. (1991). The effectiveness of stigma coping orientation: Can negative consequences of mental
illness labeling be avoided? Journal of Health and Social Behavior. 1991;32:302–320. [PubMed: 1940212]
Jane L. Givens, MD, MSCE, Ira R. Katz, MD, PhD, Scarlett Bellamy, and William C.Holmes, MD, MSCE. (2007). Stigma and
the Acceptability of Depression TreatmentsAmong African Americans and Whites. Boston University Medical Center, Geriatrics
Section, Boston, MA 02118-2393, USA
Michael R.Phillips, Veronica Pearson, Feifei Li, Minjie Xu and Lawrence Yang. (2002) Stigma and expressed emotion : a study of
people with schizophrenia and their family members in China. Published in British Journal of Psychiatry (2002).
Ritsher, Jennifer E (2003). Internalized stigma of mental illness: psychometric properties of a new measure; Publication Date:08-142003. Series:UC San Francisco Previously Published Works
Watson AC, Corrigan P, Larson JE, Sells M. Jane Addams. (2007). Self-stigma in people with mental illness (Schizophr Bull. 2007
Nov;33(6):1312-8. Epub 2007 Jan 25) College of Social Work, University of Illinois at Chicago, IL 60607, USA. [email protected]
The author presents all her grateful acknowledgements to Dr Dana Castro and Ms Chu Thi Dung, MD for her consistent follow-up,
advice and support.
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Les stratégies de faire face chez
les enfants des rues, victimes d’abus
sexuels
Coping strategies of Vietnamese street children who have been
victims of sexual abuse
Lê Quang Nguyên
VOL :5 N°1 /// PAGE 32/45
Cette article est destiné à la recherche et à l'enseignement.
Il ne peut être utilisé dans un but commercial.
Doi:10.17019/2015.EPP.3.5-02
Thematic Manager on Child Protection & Child Right Governance Psychologist, MD
Save the Children :20 Song Thao, Tan Binh District, Ho Chi Minh city, Vietnam
[email protected]
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ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
Abstract:
It is always a challenge to understand how street children conceptualize their lives on the streets,
and which mechanisms they use to cope with a history of sexual abuse. This study aimed to begin to understand the myriad of coping strategies of street children in Ho Chi Minh City, Vietnam. Reported coping
strategies differed among victims. Some mentioned the care they take when selecting friends. They asserted
to choose friends who are principled and who can only have a good influence on them. Other children chose
to ignore their past, saying the tragedy never happened, although they cannot seem to run away from the
feelings of great confusion that their trauma continues to cause. The study was made possible thanks to the
support of six young women who willingly shared with me their experiences, thoughts, and struggles over
the course of our time working together.
Key words: Street children, trauma caused by sexual abuse, child sexual abuse, coping, resiliency
Résumé :
C’est toujours un défi que de comprendre comment les enfants des rues conceptualisent leurs vies dans la
rue et quels sont les mécanismes qu’ils utilisent pour faire face à leur histoire d’abus sexuel. Cette étude
visait à comprendre la multitude de stratégies de coping mises en place par les enfants des rues de Ho Chi
Minh Ville, Vietnam. Les stratégies de coping décrites varient parmi les victimes. Certains choisissent avec
soin leurs amis en décidant de se lier d’amitié avec les personnes qui pourraient avoir, sur eux, une influence
positive. D’autres enfants, choisissent d’ignorer leur passé, en disant que la tragédie n’a jamais eu lieu et
pourtant ils ne peuvent pas se distancier des sentiments de grande confusion que le traumatisme continue de
causer. L’étude a été possible grâce à la participation de 6 jeunes femmes qui ont accepté de partager leurs
expériences, pensées et lutte au cours de notre travail commun.
Mots clefs : enfants des rues, traumatisme causé par des abus sexuels, abus sexuel sur enfant, coping,
résilience.
INTRODUCTION
Sexual abuse among street children is a worldwide issue, challenging every institution
and individual who seek to support child survivors. Vietnam is no exception. Yet there remains
little to no evidence regarding effective interventions to help these young people, especially in the
field of clinical psychology. Sexual abuse generates a wide range of symptoms, including fear,
anxiety, post-traumatic stress disorder and various externalizing and internalizing behavioral problems, such as inappropriate sexual behaviors. Street children use a variety of strategies to cope
with sexual abuse. This study aims at beginning to understand them.
Six female street children in the teenage years aged 16 to 18 participated in a series of
in-depth interviews. The semi-structured questionnaire used was developed based on years working with street children across Vietnam. Our hypothesis was that there are three possible coping
strategies: having sex with several partners; joining groups of peers with similar experiences of
sexual abuse; and denying the reality of being sexually abused.
Several relevant books and other source materials were reviewed to better comprehend
the concepts of street children, child sexual abuse, trauma, coping, and resilience. These sources
came from Western countries like France, Germany, Sweden, Italy, and America and provided
valuable insights into common coping mechanisms for children with a history of sexual abuse.
However, some factors unique to Vietnam may influence coping strategies used by young people
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here. This study, therefore, explored the context-specific coping strategies of street children in
Ho Chi Minh City, Vietnam who have been victims of sexual abuse.
Goal of this study
How do street children cope with sexual abuse? This question was repeatedly raised by
child-focused organizations in Vietnam in 2013 because child sexual abuse in general and sexual
abuse of street children in particular in Ho Chi Minh City, reached alarming levels. One study
found that 92.5% of street children (sample of 120) had been sexually abused. This finding was a
great shock to those who work to support children in HCMC, as well as researchers (Hoàng Thu
Trang et al., 2013). However, the issue has not received the necessary attention or intervention.
The majority of street children who are sexually abused does not get recognized, supported or
protected.
One challenge to a concerted response is debate over the definition of a child and
the lack of a clear or common definition of sexual abuse. While Vietnam law defines children as
under 16 years old, the United Nation of Convention on the Rights of the Child (CRC) defines
children as under 18 years old. As a result, there is inconsistency in research and data.
A review of the literature and reports from local and international organizations and government agencies in Vietnam revealed that few studies on child sexual abuse go beyond documenting its prevalence. In particular, no studies explored the resilience of street children, and how
they cope with the trauma caused by being sexually abused. Can trauma be naturally healed? Do
street children have strategies to treat themselves? Have street children experienced such trauma
for long periods of time, and if so, how do children live with these issues?
This study aims to answer these questions. The study findings are intended to help psychologists, psychiatrists and social workers better understand the language, thoughts, behaviors,
and strategies that street children use to defend themselves, and cope with sexual abuse.
LITERATURE REVIEW
1. Street children
The Vietnam Law of Protection, Care and Education for Children defines children as
those who are under 16 years of age4 (amended in 2005). Street children are defined in UNICEF’s
report on the Situation of Children in Vietnam (2010), as:
In a report on street children in Ho Chi Minh City published in 2000 by Terre des hommes
Foundation Lausanne (Tdh), they were defined as “those who are under 18 years of age, earning
income by unusual work like begging, scavenging, street vending, goods carrying, shoe-shining,
pick-pocketing, petty theft, and belonging to the categories A (including A1, A2), B, C, and D
(including D1, D2)” (See Table 1 below for categories).
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Although the debate continues on the definition of street children, these definitions have
been generally accepted by most local and international organizations operating in Vietnam.
Since the definitions were created, however, changes in the economic, social and political situation in Ho Chi Minh City have also affected the situation of street children. Today very few
homeless families live on the street. Moreover, children living on the streets must stay hidden as
regular “clean-up campaigns” run by authorities pick up street children and send them to state
institutions. Yet there are many children still living and sleeping in the street; they cannot return
home for various reasons and do not have money or needed identity documents to get shelter.
Child sexual abuse can be perpetrated within the family, known as incest, by people the
child knows outside of the home (for example, friends, neighbors, or teachers), or by strangers.
About one-third of sexual offenses against children are committed by adolescents known to the
child, although usually not members of their family. Around one-third of perpetrators are believed
to be family members (for example, fathers, brothers, or cousins). Although when we think of
incestuous relationships we often think of sexual abuse of a girl by her father (mother/son incest
is either infrequent or under-reported), child sexual abuse perpetrated by biological parents is
relatively rare, with estimates ranging from 1.5% to 16% of sexually abused children (Macdonald
et al, 2012). Older siblings may also sexually abuse their younger brother and sisters. Often, these
siblings are about five years apart. The significant factors in the abuse are power and control.
Sibling sexual abuse can be seen an expression of an older child’s “unmet needs”, due perhaps to
family dysfunction (Subgroup Against the Sexual Exploitation of Children, 2005).
Children feel forced to comply with an abuser out of fear, guilt and confusion. Often the
abuser gives or withholds rewards, such as gifts or attention. In other cases, violence or threats are
used. The child is often made to feel guilty, as if he is the cause of this abuse, which can continue
over a prolonged period, with the likelihood that the acts involved become increasingly more
severe.
For this study street children are defined as those under 18 years of age6 and belonging to
one of the categories below:
Table 1
Abuse at a young age can result in longer-term vulnerability to further abuse (Subgroup Against
the Sexual Exploitation of Children, 2005).
For this study the concept of child sexual abuse is an adult or an older child of any
sex or age engaging a child, through contact or noncontact behaviors, in sexual activity for
the purpose of their sexual pleasure.
High risk work includes:
• Street-based work like begging, shoe-shining, post-card/paper map/book
street selling, etc. and/or
• Night time work and/or
• Sex work (including selling sex or pimping sex) and/or
• Drug trading
According to this definition, category A street children have the highest risk. These children live
and work on the street without contact and/or support from family. Many of these children ran
away from home due to abuse, exploitation or even sexual abuse by relatives.
2. Child sexual abuse
Child sexual abuse has been conceptualized in various terms. It was defined by UN agencies as: “the persuading or forcing of children (as determined by the legal age of majority) to
engage in implicit sexual acts, alone or with another person of any age, of the same sex or the
opposite sex.” (ECPAT International, 2005; Subgroup Against the Sexual Exploitation of Children, January 2005, v., page 46).
It can take different forms, such as masturbation in front of a child, touching sexual parts
of the body, forcing the child to touch the adult’s body, penetration, which includes penile, digital,
and object penetration of the vagina, mouth or anus, and exposing children to sexual activity or
pornographic movies and photographs.”Sexual activity involving a child refers to any form of
stimulation. It is generally categorized as contact sexual abuse or noncontact sexual abuse (such
as exhibitionism, voyeurism or involvement in the making of pornography).
38
3. Trauma caused by sexual abuse
Street children have a tendency to conceal their own history of being sexually abused.
Sexual transmitted diseases (STIs) and physical injuries can be healed by medical treatment and
time, but the negative impacts on children’s mental and emotional state take much longer to heal,
and seriously affect their quality of life (Hoàng Thu Trang et al, 2013).
The notion of structural dependence of children and the inability to give informed consent to
sexual relationships is key in sexual abuse.
While valid and reliable data are scarce, researchers suggest that psychological damage
in child sexual abuse may be positively related to the following seven factors:
1. The age at onset of the abuse
2. The duration of the abuse
3. The degree of violence or threat of violence
4. The age difference between abuser and the abused child
5. How closely abuser and child are related
6. The absence of protective parental figures
7. The degree of secrecy (Tilman Furniss, 1991).
The damage to the social and emotional and development of children who are sexually
abused is serious. Often, significant mental health difficulties develop. Most commonly, children
experience fear, anxiety and low moods and become the focus of therapeutic interventions. It is
helpful to use a developmental perspective when considering these effects as different problems
manifest depending on the age of the affected child. For example, preschool children are likely
to experience “anxiety, nightmares, externalizing behavior and inappropriate sexual behaviors”.
School-aged children are often likely to experience “school problems, hyperactivity and night-
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mares” whereas adolescents are more likely to suffer from “depression, generalized anxiety, suicidal or self-injurious behavior, or substance misuse”. Interestingly, a significant percentage of
victims do not experience these difficulties just after the abuse, but later on in life (“sleep effect”)
and in some cases they never present any problems (Macdonald et al, 2012, page 3).
wA variety of external conditions, the outside factors that affect a person’s life, or internal conditions, the psychological characteristics of a person, make it different from simple “adaptation”.
Frydenberg and Lewis define 18 common coping strategies, of which some are maladaptive:
1) seeking support from society, 2) focusing on problem solving; 3) working hard and meeting
goals, 4) worrying, 5) focusing on close friends, 6) looking for close relationships, 7) dreaming,
8) letting things go, 9) trying to calm down, 10) social acting, 11) ignoring, 12) self-blaming, 13)
telling no one about one’s problem, 14) seeking support from religion, 15) concentrating on the
positive, 16) seeking support from professionals, 17) spending on entertainment, 18) doing physical exercise (Thu Hồng, 2008, xv., pages 19-31).
Prolonged stress, particularly at critical times (such as infancy and adolescence), can
bring about changes in the brain and brain functioning. The study of these neurological impacts is
relatively new, and the specific effects of different forms of abuse as well as the positive influence
of subsequent care-giving or familial/genetic factors, amongst other questions, remain the subject
of investigation (Tilman Furniss, 1991).
4. Resilience of children
Literature on resilience shows that scholars do not agree on the definition of this concept.
It is generally defined as “the remarkable capacity of individuals to withstand considerable hardships, to bounce back in the face of great adversity, and to go on to live relatively normal lives”
(Bautista, Roldan & Garces-Bacsal, 2000, pages 4-5).
Some view resilience more as an individual trait, a personal attribute, or an inner strength.
Others believe that resilience is generated by the interaction between individual and environmental factors. It can also be viewed as a process where the individual actively participates by
bringing attitudes, expectations, and feelings from past interactions to new experiences (Bautista,
Roldan & Garces-Bacsal, 2000).
The authors of Surviving the Odds – Finding Hope in Abused Children’s Stories (Violeta
Bautista, Aurorita Roldan & Myra Garces-Bacsal 2000) think that children who have experienced
maltreatment are not necessarily permanently scarred and incapable of healthy relationships for
the rest of their lives. Often, these victims transcend their difficulties and alter the idea we have
of children. We see them as naïve and innocent but they possess an ability to survive when faced
with adversity, and to heal themselves. The levels of resilience vary depending upon the child and
the trauma.
Boris Cyrulnik also famously spoke about this concept. For him, resilience is not just
something we find inside ourselves or in the environment. It is something we find in between the
two, because our individual development is always linked to our social development. (Boris Cyrulnik, 2009). Cyrulnik suggests “resilience has nothing to do with vulnerability or invulnerability
(the idea has not been precisely clarified though), and is quite different from the psychoanalytic
mechanism of resistance, which denies us access to the unconscious, but it may have something
in common with the notion that the ego’s defenses have to be supported by something. Psychoanalytic theory has elaborated the notions of denial, dissociating, human activism, and many other
defense mechanisms, but the notion of resilience places the emphasis on the ego’s ability to
adapt and evolve. We can be resilient in one situation but not in another. We can be wounded one
moment and victorious the next” (Boris Cyrulnik, 2009, i., pages 274 – 275).
Although the majority of sexually abused children do not go on to offend, some believe
it can be associated with an increased risk of sexual offending in adulthood and that it may, like
other forms of abuse, increase the risk of delinquency (Tilman Furniss, 1991).
5. Coping
The term coping has been defined in different ways; it originally means to deal with difficult situations and stress. It is an ability to respond effectively to one’s problems in an unfortunate
situation. These skills can be used in daily life, oftentimes subconsciously.
40
The more resilient children are, the wider their array of coping strategies. Most of these
strategies are constructive and do not expose them to extreme danger. Most often, they seek
company from their peers and talk with counselors, relatives, and employers. They are often very
careful when selecting friends. They also display more action-oriented strategies. For instance,
in response to problems, these children are more likely to engage in activities like housework,
studying, playing, singing, watching movies, finding something to do, and distancing themselves
from their abusers.
Some coping strategies are considered more internal, such as forgiving oppressors, being
good, taking things like a man, talking to oneself, thinking, praying and trying to understand
people.
In contrast, less resilient children respond in ways that do not help them solve their problems and instead make them more emotionally upset. These children become hostages to their
oppressors by maintaining feelings of bitterness, hurt, and anger. They also cry uncontrollably
while talking about their past. The emotional pain is sometimes so strong they even faint or feel
weak when questioned about their trauma (Bautista, Roldan & Garces-Bacsal, 2001).
In “Emotion & Adaptation”, Lazarus wrote that coping consists of cognitive and behavioral efforts to manage situations that exceed a person’s resources. Coping can affect the posttraumatic emotional process in two ways:
Some coping processes change the actual relationship, like when an attack or aggressive display
wards off or destroys an enemy. This is called problem-focused coping as it is centered on action.
Other coping processes change only the way in which the relationship is attended to (e.g. threat
that one avoids perceiving or thinking about) or interpreted (e.g. a threat that is dealt with by
denial or psychological distancing). These are emotion-focused or cognitive coping strategies,
because they involve mainly thinking rather than acting to change the person – environment
relationship. These strategies are not passive, but pertain to internal restructuring, sometimes
even to the point of changing a commitment pattern that cannot be actualized. These strategies do
not change the relationship itself, but rather its meaning and therefore the emotional reaction is
creates (Lazarus, 1991).
Lazarus has also shown the importance of goal-oriented coping: how the persons deals
with difficult situations has to do not only with “coping possibilities and how they are appraised
but also on what a person wants to accomplish in the adaptive encounter”. Studying motivation is
key when researching coping strategies, though its focus in research and theory is recent (Lazarus,
1991, page 115).
METHODS
The goal of this study was to identify coping strategies used by sexually abused street children in
Vietnam. Three possible strategies were investigated: having many sexual partners to trivialize
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sexual abuse, joining groups of peers with similar experiences so as to be better understood, and
denying the reality of the abuse to keep emotions at bay.
Participants
Six female street children were selected for this study. All were teenagers between 16 to
18 years of age, had been sexually abused prior to age 16, were category A meaning that they had
no family support and slept on the street, in parks, bus stations or rental rooms. All voluntarily
participated in the interview process.
The study followed ethical procedures outlined in the Child Protection Policy under Save
the Children International. Specifically, an ethical statement was be developed prior to the interviews. Each teenager received VND 100,000 (equivalent to about 5 USD) to defray lost income
during the time spent. This amount was not included in the consent form as previous studies with
street children found that many children did not want it mentioned in the consent form.
Methodology
In-depth interviews were conducted using a semi-structured questionnaire. The
questionnaire was developed based on the three coping hypotheses. The interview was not directive, so as to let each teenager control its progress. If necessary, especially for those who found it
is difficult to initiate conversation, they were encouraged to draw a picture and start from there.
Projective testing was also used. Teenagers freely selected three out of 10 photos, and
talked about their selection. The projective test allowed teenagers to freely express ideas and further explain/supplement the incomplete information during the interview.
Procedures
Researchers initially found participants by meeting them where they lived on the street. If
the teenager was living among an organized group/gang with a leader, it was crucial to have a talk
with the leader before contacting the teenager for safety. After they gave consent and accepted to
be recorded, interviews were conducted in a safe and private environment. The interview process
was then explained to them: it would last a little over an hour and they could end it at any time, or
refuse to answer any questions. They were also informed of confidentiality; their names would be
anonymized.
During the interview, a female social worker was present to ensure the teenagers’ wellbeing. She was experienced in working with abused children, and could also request to terminate
the interview at any time.
Every teenager was provided a referral service including psycho-therapy or counseling,
addresses for where to go for help, and information about street children support services, if needed.
RESULTS
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The study findings are divided into two parts: general findings and findings in relation to the hypotheses.
General findings:
- Release
It was extremely hard for teenagers to speak about the tragedy that took place during their childhood. The interview process evoked complex emotions from these memories. Some teenagers tended to
deny they were victims of sexual abuse; however, the denial did not make sharing any easier. “Dodging”
these emotions worked temporarily but the memories were quite clear in their minds. Others were well
aware of what happened and had decided to NEVER tell anybody about their stories.
All those who shared with us said they felt immediate relief after the interviews, the burden had somewhat
been taken away: “Too many things have been hidden. I feel joyful to let them out, the burden has been
lifted from my heart” (Mây, 18)
- They are all from broken, unhappy families
All of this study respondents are from broken or unhappy families. Five of these teenagers’ parents
are divorced; one has parents living together, unmarried and unhappy. Most had dropped out of school by
grade 6 or 7 to work and support their families or themselves. They did not have a happy childhood, and
received insufficient support and care from parents. Moreover, some of them were hostile throughout the
interview when talking about their own parents:
“I feel hatred to such a degree that I have no intention of seeing them even once again. I feel hatred to such
a degree that I always say they are dead when somebody asks about my parents. When asked my family’s
name, I say ‘don’t know’. It means I am so upset and do not want to be their child.” (Mây, 18)
They often end up on the street as a result of receiving no care and love from their family:
“There’s a lot of pressure from my family, they always think of money, money, money. Feeling bored, and
sad, I left home and moved to the park.” (Nhâm, 18)
- They are all victims of sexual abuse
They were all sexually abused before turning 16. Below are the ages of these teens and how they were
sexually abused.
a. Nhâm, 17 – raped by her brother at 10 (who was 9 years older)
b. Châu, 17 – swindled, and sold into a brothel at 15
c. Thảo, 17 – forced to sell virginity at 15
d. Mây, 18 – forced to have sex at 15
Transcripts were coded to identify core concepts and themes from the interviews. To handle issues
related to coding discrepancies, analysts always consulted codes defined by the interviewer. The results
from the projective test were used to further explain certain aspects of the interview, or for cross checking.
Notes taken during the interview were also used, such as those concerning body language.
What these teenagers shared with us somewhat confirmed previous findings/results of studies on
sexual abuse. However this study is limited to primarily exploring how teenagers living in the street deal
with this issue.
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e. Trúc, 17 – swindled to have sex at 14
f. Trâm, 18 – forced to have sex at 14
- They never stop thinking about the abuse
The projective testing showed how all of these teenagers had traumatic and obsessive thoughts
about their abuse. They often chose the same photos: a bride in a wedding dress and a girl with her hands
clasped together. These pictures made them think about their desires to be loved and to feel dignified. The
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pictures also made feelings of hopelessness arise, as they felt they would never be accepted. They said,
“Only girls who are virgins would be accepted”. The issue of virginity was very important to these girls,
and had never left their minds since the abuse. They wished that they could get their childhood back.
Acceptance, friendship, and admiration from their peers are not only necessary to survive on the streets but
also a relief from their constant feelings of guilt, failure, loneliness and low self-esteem. They said in the
interviews that they had never spoken to their friends about their childhood, but expected they could share,
if they wanted. The fact is they had never told anyone.
- Contradictory emotions
As previously discussed, these teenagers were caught between two obsessive thoughts: thirsting
for normalcy and love, like that of a wedding, and simultaneously feeling helpless and hopeless. They forced themselves to stop thinking about a happy future.
The taboo on sex abuse is intrinsic to Vietnamese culture, and a child victim has to reconcile two
needs that are both contradictory and closely associated: the need to belong, so as to feel they have support,
and the need to become autonomous, so that they can feel proud of having won their freedom.
Denying the reality of being sexually abused is a coping strategy
They are also torn between a profound desire for peace of mind and strong feelings of anger and
guilt that torture them. Most described themselves as wounded souls in need of healing: “I go to the temple very
often to look for some peace and quiet, praying to get back the innocence but it is impossible.” (Thảo, 17)
The findings confirm this hypothesis. The main mode of denial is to say nothing about being
sexually abused and to try not to understand what has happened. They also often try to persuade themselves
that they instigated intercourse.
- Substance use and abuse
These teenagers often turn to substance abuse. They believe it is a way to appease their unanswered questions and escape reality:
The participants in this study had a tendency to avoid talking about sex, including the sexual
abuse they suffered as children. Selling sex is prohibited and negatively viewed in Vietnam. Sexual abuse
is a taboo subject; any discussion concerning sexual needs and activities is not encouraged, regardless of
the efforts to change this for health promotion purposes (i.e. HIV prevention, early pregnancy prevention).
Consequently, exposing the secret of their past history of being sexually abused could lead to more violence, isolation, and rejection by other youths living on the streets. We must not forget that these young
people live in a very insensitive environment. An exposed secret of being sexually abused could bring more
harm than good, and their stories therefore tend not to be told until they are confident that help is available.
Except for the girl who was raped by her brother, five out of the six participants remained vague
about their history of sexual abused. This is a common reaction to avoid being faced with the tragedy of
their past.
When I think too much, I get a headache and I go out for alcohol. It makes me tired and I go home to sleep.
I drink alcohol very often.” (Châu, 17)
I use drugs (methamphetamine) to forget things.” (Thảo, 17)
- Findings concerning hypotheses:
Having sex with multiple partners helps a sexually abused child cope better with the trauma because it
makes them trivialize rape or sex abuse
The participants of this study have many partners because of prostitution, but it is not a way they
cope with trauma. The teenagers’ ideas do not confirm the initial hypothesis neither in the interview nor the
projective testing. They feel ashamed of themselves and justify this work because ‘there is nothing to lose’
as they are not virgins anymore.
They believe it will be impossible for them to get a safe job or a stable income, and think they are
not protected in the streets unless they are part of a group or a brothel. Regardless of how long they have
been selling sex, they never lose the sense of shame that they attach to prostitution, and they continually
look for chances to reintegrate into ‘normal society’.
Joining groups of peers with similar experiences of sexual abuse helps a sexually abused child better cope
with trauma
Our findings seem to confirm this hypothesis. Indeed it is difficult for children to share their experiences but they tend to gravitate towards peers with similar histories. While it is not clear exactly how they
know that their friends have also been abused in the past, this study nevertheless found being part of a peer
group which has had similar experiences helps them cope better with their trauma.
Joining groups of peers is also one way that street children cope with the discrimination they face
from society. Street children seem to believe that they can survive society's condemnation if they do not
care – or act like they do not care – about what people think of them. Alone this is difficult, so they band
together. This is a form of escapism, which street children call freedom, but, if it becomes a way of life, can
be a self-destructive trap that can swallow their identity, values and sense of reality. This false bravado gives
them a sense of invulnerability, and they deliberately flout society’s values as a provocation.
44
Some teenagers are even adamant about not being considered victims, and even suggest they
played a part in the abuse. This shows how their self-worth has been shattered. The interviewers further
noted that the teenagers had placed a price on the value of their virginity, which in itself is a rejection of
their own value.
DISCUSSION
There are many different strategies street children use to cope with sexual abuse. This study does
not have enough data to identify all of them, and therefore leaves rooms for further exploration of this
topic. Furthermore, this study confirms that street children are extremely resilient, but there is not enough
evidence to confirm which specific strategy best helps to heal these young people’s trauma, or conversely,
to make claims on which strategies make living with the trauma more difficult.
What is clear from the data is that street children’s resiliency helps them cope with many different
challenges that naturally come from living on the street. Before leaving their family, street children generally experienced many forms of abuse and neglect at an early age. By running away, they were forced to
adapt to an even more hostile environment, without shelter, security or love, therefore being subjected to
even greater emotional damage. When, on top of that, people regarded them as being "good for nothing",
"delinquent", "lazy", or "bad", they started to believe it themselves – a belief that is continually reinforced.
At the same time, they developed strong feelings of resentment, especially if they believe they have not
done anything wrong.
The trauma of sexual abuse is an additional challenge in the daily lives of street children, and they have no
other choice but to face these severe conditions in order to survive. Street children get trapped in a cycle
of negative experiences: not only are they lacking material resources to support themselves, but they also
have no access to emotional support to help them deal with current and past trauma. This burden falls hard
on all street children, but particularly on those who are less resilient.
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The notion of street children “locking away” their past history of sexual abuse raises several questions: how do youth compartmentalize the traumas that they face, when does this process begin, and what if
there are too many bad experiences to be locked away? While this study began to understand this strategy
of copying, many of these questions are still unanswered.
possible, should seek to understand more about other coping strategies street children use. This
could increase the effectiveness of the help provided to street children who have been sexually
abused. In addition, studies should be conducted with other child victims – those who are not
living on the streets – in order to better understand children’s defense mechanisms at different
ages, whatever their gender.
LIMITATIONS
•
April and May are not good times for these types of interviews. Living on the street, these teenagers have been moving from place to place to avoid the clean-up campaigns organized by authorities.
•
The study sample is small, and focuses on a few 16 – 18 year old girls. Therefore the data and
findings of this study should be considered only for this particular group if quoted or used.
•
The teenagers wanted to be interviewed in parks or anywhere near where they were staying, resulting
in some disturbances. Interview location changes were necessary to protect the secret of their stories.
•
There are very few relevant reference documents on child sexual abuse, especially in relation to street
children in Viet Nam.
Conclusion
Based on a thorough literature review, this is the first clinical study on child sexual abuse
in general, and street children in particular, in Vietnam. The study is therefore precursory, although the sample size is small. The findings of this study provide a way to begin to understand
the coping mechanisms used by street children in Vietnam in order to deal with past histories of
sexual abuse. Many questions remain unanswered, so further work is necessary.
Since the purpose of the study was not about the number of street children who are
sexually abused, no claims can be made about the percentage of street children who ran away
from sexually abusive homes. A separate study is necessary to clarify this. In addition, the types
of sexual abuse – contact versus non-contact – and the prevalence of each should be further
explored, in order to create adequate interventions and therapy tools that these young people so
desperately need.
The child victims are in need of professional therapy. They cannot speak out about their
problems due to the hostile environment in Vietnam towards victims of sexual abuse. Also, as
denial is a main defense mechanism, few of them would ever seek out a therapist. Moreover,
there are very few clinical therapists working on sexual abuse in Vietnam. Sexual abuse is taboo,
particularly incest. There is limited understanding nationwide about the psychological element of
sexual abuse, and therefore limited therapeutic resources that can be employed to deal with this
issue. Increasing the number and the quality of therapists available to help children cope with
sexual abuse is critical. Restructuring emotions, promoting positive values and working on dissociative behaviors are basic needs for teenagers, especially those living on the streets, who have
been sexually abused.
As it was not a focus of this study, the issue of incest needs to be better explored. Being
a victim of incest has ramifications for the rest of the child’s life, particularly concerning the way
they conceptualize themselves and their familial relationships. The child becomes confused about
his or her position within the family. The child’s perception toward the generations of her family
is chaotic, and leads to extreme difficulties building future relationships.
I hope that the study will bring about new initiatives to help child survivors, and will
foster a supportive environment that enables more young people to feel comfortable sharing their
stories. Coming to terms with their past is an important first step in their healing process.
/// Bibliography
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SECTIONS
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RESEARCH REPORTS
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2013, Hà Nội (92 pages)
XIV.Tim Bond, A study on street children in Ho Chi Minh city, Terre des hommes Lausanne, 2000, Ho Chi Minh city (86 pages)
THESIS REPORT
XV. Đỗ Thị Thu Hồng, Kỹ năng ứng phó với những khó khăn trong cuộc sống của học sinh Trung học Cơ sở tại Hà nội, Luận văn
Thạc sĩ Tâm lý học, Bộ Giáo dục và Đào tạo – Viện Khoa học Giáo dục Việt nam, Hà nội, 2008 (pages 7 – 45)
And lastly, there is a great need for further clinical studies in Viet Nam on sexual abuse,
which can be a part of the country’s growing area of work on clinical therapy. Other studies, if
WEBSITES
XVI. The American Psychological Association, Ethical Principles of Psychologists and Code of Conduct, Adopted August 21, 2002
Effective June 1, 2003 with the 2010 Amendments Adopted February 20, 2010 effective June 1, 2010
46
47
Proposer une thérapie psychologique aux
patients atteints du cancer
Une étude initiale de la proposition de l’APT
aux patients atteints de lymphome,
à l’hôpital oncologique d’Hô Chi Minh Ville
Applying Adjuvant Psychological Therapy (APT)
for Cancer Patients:
Initial study and application of APT for lymphoma
cancer patients in treatment at Ho Chi Minh
City Oncology Hospital in Vietnam
Thi Uyen-Phuong TRAN
VOL :5 N°1 /// PAGE 46/63
Cette article est destiné à la recherche et à l'enseignement.
Il ne peut être utilisé dans un but commercial.
Doi:10.17019/2015.EPP.3.5-04
Lecturer, Department of Medical Ethics and Behavioral Sciences - Psychology
Pham Ngoc Thach University of Medicine (PNTU)
Add: 86/2 Thanh Thai Street, Ward 12, District 10, HCMC, VIETNAM
[email protected]
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ETUDES ET PRATIQUES EN PSYCHOLOGIE t VOL :5 N°1 /// DECEMBRE 2015
Abstract :
Introduction
Objective: The goal of this study was to evaluate the efficacy of Adjuvant Psychological Therapy (APT) for
lymphoma cancer patients at Ho Chi Minh City Oncology Hospital in Vietnam.
Cancer is a critical health issue as it is the most important cause of death in many countries around
the world, including Australia, Canada, Italy, Japan, the Netherlands, New Zealand, United
Kingdom and the United States (WHO, 1996). It requires complex and expensive treatments
over an extended period of time, and causes severe psychological effects in patients. According
to statistics, one in every four people will have cancer and it is the third cause of death worldwide
after heart attacks and accidents.
Method and Procedures: Aside from a qualitative analysis method for each clinical case, the Hospital Anxiety and Depression Scale (HADS) was used to evaluate the effect of psychological support on each cancer
patient. Levels of anxiety and depression were compared before and after 5 weekly APT therapy sessions, which
all had a cognitive-behavioral focus. The 4 participants were all female, ranging from 40 to 65 years old.
Results: Initially, all 4 patients presented anxiety and depression symptoms. They also experienced fear of
feeling pain and not having pain management skills, fear of death, insomnia or difficulty falling asleep, and
all required psychological support throughout their treatment process. After 5 weekly therapy sessions, both
qualitative and quantitative results showed positive changes for all 4 patients: a reduction in anxiety and
depression symptoms, an increase in the amount of sleep and better pain management. However, therapy
generally needed to be extended for 2 to 4 months more.
Conclusion: Cancer patients who participated in this study had anxiety and depression symptoms that required psychological support. It was shown that 5 weekly APT therapy sessions could significantly reduce
these symptoms, supporting the idea that APT could be beneficial to patients if incorporated into their
treatment plan.
Keywords : cancer, lymphoma cancer, adjuvant psychological therapy, psychology of cancer patients
RESUME
Objectif : l'objectif de cette étude était d'évaluer l'efficacité de la thérapie psychologique adjuvante (APT)
aux patients porteurs de lymphome à l'Hôpital Oncologique de Ho Chi Minh Vietnam.
Matériel et méthodes : parallèlement à une analyse qualitative de chaque étude de cas, la Hospital Anxiety
and Depression Scale (HADS) a été utilisée pour évaluer l'effet du soutien psychologique, chez 4 patients,
femmes, âgées de 40 à 65 ans. Le niveau d'anxiété a été mesuré avant la mise en place de l'APT et après 5
semaines d'un traitement psychologique de type cognitivo-comportemental.
Résultats : A l'inclusion, les 4 patients présentaient une symptomatologie anxio-dépressive, accompagnée
d'une peur de la douleur et de l'incapacité à y faire face. Ils décrivaient également une peur de la mort,
insomnie ou des difficultés d'endormissement et réclamaient un support psychologique. Après 5 semaines
de thérapie à raison, d'une session par semaine, les résultats quantitatifs et qualitatifs ont montré des changements positifs pour les 4 patients allant dans le sens d'une diminution des symptômes anxio-dépressifs,
une amélioration du sommeil et une meilleure gestion de la douleur. Toutefois, la thérapie a nécessité d'être
prolongée pendant encore 2 à 4 mois.
Conclusion : Les patients atteints de cancer ayant participé à cette étude et ayant reçu un soutien psychologique ont montré, 5 semaines après la participation à des sessions d'APT une réduction symptomatique
significative soutenant l'idée selon laquelle, la thérapie psychologique est bénéfique aux patients et pourrait
être incluse dans leur protocole de soins.
Mots clefs : cancer, lymphome, thérapie psychologique adjuvante, psychologie du cancer.
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According to the Vietnam Cancer Society, more than 150,000 people are currently suffering from
cancer in Vietnam and 82,000 people die from it each year. Approximately 13,000 people are diagnosed at Ho Chi Minh City Oncology Hospital (HOH) alone, including those transferred from
other provinces, every year 5,500 of those patients live in Ho Chi Minh City (Nguyen Ba Duc,
2009; Pham Xuan Dung, 2014).
Cancer is a disease that has a severe psychological impact not only on patients, but also on their
relatives. Often they are riddled with despair, pessimistic, depressed and want to stop treatment
and give up. During the treatment process, psychological support from medical staff and family
is essential to give hope to those facing the disease and to foster compliance to the treatment protocol (Morrey et al., 1999). This support can also help reduce emotional stress, enhance communication between patients, relatives and doctors, limit the consequences of treatment and improve
quality of life for patients. However, psychology, and especially psychotherapy, are fields that
have yet to be thoroughly explored in Vietnam. Currently, the main focus is developing educational psychology and social psychology, while medical psychology fields have not been paid proper
attention. Indeed, no formal training programs exist and research is almost non-existent.
Dr. Eric L. Krakauer, the program director of international palliative care at Harvard who was
advising the research team at the time, suggested that CBT be used. CBT constitutes appropriate psychological support for cancer patients as it can help them be more positive and better
comply with treatment (Beck, 1988; Dattilio & Padesky 1990; Savard et al 2006; Moorey et al.,
2009). After training in cognitive-behavioral therapy conducted by Dr. Armin Kulr in Germany,
Adjuvant Psychological Therapy, or APT, was also considered. APT is a form of CBT that helps
cancer patients deal with anger, fear, sadness, anxiety, depression, and pain management (Turk &
Fernander, 1991; Crichton & Moorey 2002; Morrey et al., 2012). It is suitable for cancer patients
because it usually spans 6 to 12 therapy sessions, over a maximum of 3 months. As in classic
CBT, psychological evolution of patients is easily evaluated, making this an interesting research
tool. Some techniques have even been shown to bring immediate results, sometimes within the
first session, such as therapeutic relaxation, mindfulness, and breathing exercises (Kabat - Zinn,
1999; Speca 1999 Segal et al, 2002; Lengacher et al., 2009; Barley, 2011).
1. Literature Review
Lymphoma
Lymphoma is a form of cancer affecting cells in the immune system, called lymphocytes or leukocytes, which have an important role in helping the body fight against diseases. These cells are
stored in lymph nodes found throughout the body, especially in the neck, armpits, groin, heart,
major blood vessels around the stomach, spleen, tonsils and thymus. Lymphoma is a type of
cancer that develops from lymphocytes in those areas. No specific cause has been found but lymphoma can be closely associated with immunodeficiency diseases caused by congenital immune
system abnormalities or due to the AIDS virus.
There are two types of lymphoma cancer: Non-Hodgkin's lymphoma (NHL) and Hodgkin's lymphoma. Patients in this study were all diagnosed with the former.
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NHL is one of the ten most common cancers in Vietnam and many other countries around the
world, ranked 5th in prevalence and 6th in mortality. It occurs most commonly between 45 and 55
years old and is rare in children. Also, men tend to be more vulnerable to this disease than women.
Like most forms of cancer, treatment includes chemotherapy, radiotherapy and surgical treatment.
After obtaining this general information, the focus will be assessing current issues that are a priority
for therapy, and how they will be treated sequentially by APT. Typical issues often include: general
problems related to cancer (fear of death, fear of recurrence, fear of side effects of treatment); specific
problems related to each type of cancer (the loss of femininity in breast cancer, stress about sex life
after cervical cancer or vaginal cancer, etc.); emotional reactions (depression, anxiety, anger, envy,
fear, guilt,…); interpersonal problems, physical problems (nausea and vomiting, pain, fatigue,…) and
socio-economic issues (responsibilities and obligations, joblessness, financial difficulties). Each session will then be designed according to these targeted symptoms.
Adjuvant Psychological Therapy (APT)
In medical terms, adjuvant therapy, also known as supportive care, is the additional treatment
suggested for patients with a high risk of recurring cancer. The goal is to add support to initial
treatment to better its results (Moorey & Greer, 1989; Cunningham, 2000).
Adjuvant Psychological Therapy (APT) is a new therapy based on Cognitive-Behavioral Therapy, which was designed specifically for cancer patients. APT was developed as a reworking of
Beck’s Cognitive Therapy (1976) and based on clinical experiences and therapeutic research with
a group of cancer patients in King’s College Hospital and Royal Marsden Hospital in London
(Greer, 1995). It is a short-term therapy with an average of six problem-focused therapy sessions
designed to be integrated into a medical environment. Its focus is the improvement of quality of
life through the reduction of emotional stress and a boost of the fighting spirit. APT emphasizes
on building positive attitudes to help people cooperate during treatment and be well prepared
when faced with varying physical symptoms (Moorey and Greer, 2012).
Framework of APT
The APT therapeutic program is usually comprised of six to twelve weekly sessions, but frequency can increase if the patient’s level of distress requires more treatment. The varying length of
treatment usually depends upon the stage and form of cancer. The average duration of a therapy
session is 60 minutes. The first session can last up to 90 minutes as it is designed for data collection.
Session structure
Like all CBT-based therapies, sessions are well structured and the therapist must follow this
sequence.
First, the therapist and the patient establish which symptoms (usually one or two) will be specifically targeted in the session. Then, the previous session is reviewed and the patient recalls what
he remembers and what the objectives were for that session. This feedback helps the therapist
adapt each session to the patient’s needs and helps him see what the patient took away from it.
Then, homework is reviewed and the person must share what was difficult and what needs to be
changed.
After this review, the patient describes the difficulties that need to be worked on and, collaboratively, therapeutic techniques are chosen to help the patient. Based on this content, homework
tasks are designed.
The therapist then summarizes the aim of this session, the techniques implemented and the
homework assignments that were decided upon.
The first sessions
The first therapy session, considered to be an important step in the treatment process, often lasts
up to 90 minutes as the therapist is trying to collect as much information as possible. First, he
needs to explore the patient’s anxiety and depression levels, financial situation, relationships and
prognosis. Specific emotions and thoughts also need to be assessed. This data can be collected
through semi-directed interviews or tests, questionnaires, and checklists (such as CCC or HADS).
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The first sessions also allow the therapist to explain how APT works and its essential characteristics. It
is best described as a method allowing a change in the perception process, in which patients will learn
the relationship between thoughts, emotions, behavior and physical responses. For example, patients
will learn the impact of automatic thoughts, which often create negative emotional states. These emotions then trigger maladaptive behaviors, which in turn create more mental anguish.
During the treatment process, the therapist must always make sure that the patient understands the reason why each technique is implemented, and how to put it into action. For example, when a cognitive
technique is introduced, the therapist can present a diagram to demonstrate the interaction between the
thoughts, emotions and behaviors of the patient. The therapist can also explain concepts related to core
belief systems. A core belief is created by our own experiences, and we often act and think in ways
that will confirm this belief, thus rejecting things that do not. Those core beliefs constitute our views
about ourselves, our relationships, our world and our outlook on the future. Not all core beliefs cause
psychological issues, only those which are maladaptive and destructive (Le Thi Minh Tam, 2013). As
treatment progresses, the therapist will help patients to become more aware of their core beliefs and
how they affect their current situation, and modify them with specific techniques if needed.
The different phases of the therapeutic process
During the initial sessions (usually no more than three), the principal objective is to create a good
therapeutic alliance and trustful relationship with the patient. This will help the patient express
emotions with more ease and will facilitate the therapeutic process
In addition, the patient’s general goals are discussed and the program’s basic techniques are introduced. Patients understand that symptoms will be reduced by developing new coping strategies
and that urgent issues will be treated first.
During the following sessions, the patient’s history, current life and problems are discussed. When
did these problems arise? How have they been processed? During this period, the therapist often
takes time to assess the patient. After determining target symptoms and ranking them from most
to least important, the therapist can select an appropriate strategy or combine alternative strategies
to resolve these problems. Patients are asked to record their dysfunctional thoughts to serve as
examples for cognitive methods during sessions. New methods are learned during this period, and
help the patient and relatives cope with negative thoughts and improve quality of life.
The last one to three sessions are used to talk about the future after therapy has ended.
Possible cancer relapse and death are often common topics, as the therapist must prepare the
patient to be able to cope with such possibilities. The patient is also encouraged to plan for his
short and long term projects (over a 3 to 12 month span). Core beliefs are also identified and the
therapist helps implement changes in the patient’s lifestyle to promote better self-care (working
less, preserving sleep, etc.)
Homework assignments
After every session, the therapist assigns homework based on what was discussed that day. The
goal of these assignments is to help patients transfer these new skills to everyday life. Each task
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is chosen in collaboration with the patient, and tweaked if considered too difficult. For example,
the therapist can ask the patient to write down automatic thoughts corresponding to a specific
situation, and the emotions and behaviors that ensue. For anxiety symptoms, relaxation is often
suggested, and depressed patients are often asked to plan interesting or pleasurable activities.
The therapeutic relationship
As in all cognitive-behavioral therapies, the therapeutic relationship is not as asymmetrical as
in other forms of therapy. APT emphasizes on the patient’s cooperation and active participation
in every session. Therapists share the theories which APT is based on, and explain every aspect
of the therapeutic process to the patient, thus clarifying what they do not understand or dislike.
Patients can also question the usefulness of each therapeutic step, as the therapist’s transparency
and explanations will help them adhere to the therapy.
The end of therapy will also be discussed collaboratively.
Goals of APT’s therapeutic:
a problem-based method
The aim of APT is to show patients the relationship that exists between emotions, thoughts and
behaviors, thus helping them modify them through cognitive and behavioral techniques. The goal
of therapy is symptom relief, most notably the decrease of emotional distress.
The following are the six main goals of APT:
•
•
•
•
•
•
Decreasing the level of depression and anxiety
Boosting the fighting spirit by enhancing positive thoughts
Reinforcing sense of control and helping patients follow the treatment process
Developing effective strategies for issues related to cancer
Improving the quality of relationships between patients and their relatives,
which will improve the awareness of the value and meaning of life.
Encouraging patients to release anger and negative feelings in a safe environment.
Targeted symptoms
When suffering from diseases, patients are in the state of restricted activity, unbalancing in all psychological, social and physical respects (Vexenkin, 1980) [20; 17]. Arrcodring
to Dr C.D. Sherman, Jr. about the psychosocial aspects of cancer in Manual of Clinical Oncology-Fifth edition by International Union Against Cancer (1990): “All of the diseases, cancer is the
one that has the most formidable psychological impact. It spells not only death – the disnity of us
all – and a progressive painful approach to it, but also multilation, either natural or posttherapeutic” [31; 16]. Patient reactions vary depending upon levels of study, ethnicity, socio-economical
context, religious beliefs and the patient-physician relationship. (Phạm Thị Oanh, 1998).
Generally speaking, anxiety and depression are important targets of APT, but to
be able to modify these symptoms, coping mechanisms, automatic thoughts and other various
cognitive symptoms need to be explored:
•
Adjustment: for cancer patients the capacity to adjust to their illness and develop their
stress management skills is an important aspect of their mental health. In the early stages
of cancer, many patients are angry, sad or fearful because of this life-threatening disease.
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These reactions are normal. Over time, each patient needs to individually adjust to his
circumstances. Those who have a low capacity for adjustment have a tendency to be
rigid, have negative thoughts on treatment and feel a complete loss of control. Five basic
adjustment styles have been described in research:
•
•
Fighting spirit: patients believe that they can control their sickness and their lives.
Denial: patients may avoid, refuse, or even forget necessary treatment, believing that
they are in fact healthier than they are (Institute of Medicine, 2008)
•
•
Fatalism: Patients do not believe that they can control their sickness but think that others can.
Helplessness/Hopelessness: Patients believe that nothing could change the status of
their health. These negative thoughts about themselves, their lives and their future
usually lead to symptoms of depression.
Anxious preoccupation: Patients are uncertain about their efforts to control their sickness.
•
•
Basic assumptions: cancer patients’ basic assumptions about their lives change once
they get their diagnosis as their prior perspective on life is shaken up. The diagnosis can
generate a drastic loss of faith in the world and in what life has to offer (Janoff Bulman
et al., 1999).
•
Cognitive distortion: Depressing thoughts are maintained by cognitive distortion, as
patients minimize positive information and exaggerate the negative aspects of their
illness. They often consider that their efforts have never borne results and that the
future is bleak, whatever they may do. Patients often fall into the “black or white”
mindset, and have a tendency to look for and adhere to rigid and negative thoughts.
•
Cognitive and affective avoidance: at some point, all patients will experience what it is
like to be overwrought with worry, and will try to avoid thoughts and emotions related to
cancer. They can intentionally avoid negative emotion, thus numbing all other emotions,
in the hopes of decreasing their anxiety and depression. This is often the only strategy
they find to experience relief during lengthy periods of treatment. Avoidance can help
patients function for a time but eventually, they will need support to release these negative thoughts and emotional states they have been suppressing.
•
Negative Automatic Thoughts: Negative automatic thoughts are the main reason for
depression in patients, and appear in the patients’ mind without them even noticing (Le
Thi Minh Tam, 2013). Based on APT’s theory, inappropriate adjustment styles trigger
more pessimistic thoughts that are usually exaggerated. Thus, they fall into the «traps
of negative thoughts» which will prevent them from finding effective solutions for their
sickness. When people are healthy, they usually have a positive outlook on life, their
relationships and the world. After being diagnosed with cancer, their core beliefs are
shattered. Their self-image and self-esteem are altered by a flood of continuous negative,
rigid thoughts.
•
Threat to survival and threat to the self: When facing a cancer diagnosis, patients usually
experience an alteration of self-image and the traumatic possibility of death. They believe death to be unavoidable, that painful sensations will inevitably increase, and that
the body will be devastated regardless the stage of the disease (Pham, 1998). In the first
stage of the disease, patients can sometimes wish to die even though they still love to be
alive, because they cannot manage the threat of imminent death (Vũ Đức, 2009). These
two threats can coexist.
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Therapeutic techniques
Emotional Expression
It is important for the therapist to help patients express their emotions before introducing therapeutic techniques. According to Dr. Elizabeth Kubler-Ross (1969), the mindset of cancer patients,
whatever stage of cancer they may be in, are rather like those of patients near death. They can go
through five different stages: shock and denial, anger, bargaining, sadness and depression, and
finally acceptance. She believed that not all cancer patients would necessarily go through the five
stages sequentially as above. There are those who will be stuck at a certain stage, while others go
through the stages in a less linear fashion.
Anger, one of the most common emotions related to such a diagnosis, is often the most difficult
emotion to express (Watson et al., 1984). APT is designed to create a safe environment where
the patient can share the full range of their emotions: “The important task in APT is to encourage
patients’ expression of negative feelings” (Greer, 1995).
Behavioral Techniques
Behavioral techniques are usually applied in the early stages of the treatment process and are similar to those used in CBT for anxiety or depression. These techniques include assigned homework,
relaxation and distraction. Cancer generally causes a loss of the sense of control, making patients
slip into passive behavior. By using behavioral techniques, therapists help patients develop new
self-control skills despite the challenging circumstances the illness has brought on. This then fosters cooperation and helps patients understand the need for self-help techniques as the treatment
progresses.
Cognitive techniques
During each therapeutic session, therapists examine patients’ thoughts. During the first few sessions, therapists need to request that patients record these thoughts so that they can be explored
one on one. Together, they will evaluate and discuss them. This helps patients become more aware
of their automatic thought processes, especially those that trigger negative emotional states. Different techniques can be used to help patients modify or distance themselves from thoughts:
•
Reality testing: patients search for evidence for their thoughts. This helps them separate
reality from sorrowfulness.
•
Search for alternatives: during this exercise, patients are challenged to find alternative
thoughts that would have generated different, and more positive, emotions.
•
Decatastrophizing: Therapists encourage patients to think of their fears and evaluate whether they are evaluating them in a realistic way.
•
Behavioral plan: Cognitive changes lead to behavioral changes. When patients start to question automatic thoughts, it can be a good idea to give them behavioral homework that will
further reinforce their new beliefs.
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In 1991, Greer, Moorey and Baruch began studying the effect of APT on cancer patients. After 8
weeks of treatment, there was a significant decrease of patients’ initially high levels of anxiety and
depression. One year later, Baruch et al. (1992) began a randomized clinical trial on a much larger
scale. According to the evaluation, the results showed that APT therapy significantly improved
psychological distress, most notably anxiety and depression symptoms, in patients with cancer.
The effect of treatment was observed during the eight weeks of treatment and were maintained in
some cases after the four month follow-up. There was a significant increase in fighting spirit in the
experimental group compared to the control group and patients with high scores of helplessness,
anxious preoccupation, and fatalism were significantly relieved of these symptoms.
In 1998, Greer published a case study of a woman suffering from cancer with mild depression and severe anxiety concerning her imminent death. After a few APT sessions, her anxiety
symptoms had disappeared and she began to recover a sense of control and to have more peaceful
communication with her daughter. Greer believed that APT could also be applied to a hospital
setting. In that same year, Bliss et al. (1998) compared classic supportive counselling with APT
in a hospital setting with 57 in-patients. After eight weeks, APT demonstrated a significantly
greater change compared to normal counseling interventions with issues such as fighting spirit, helplessness, coping with cancer, anxiety, and self-identification with problems. After a four
month period, those following the APT program had greater changes in morale, coping skills and
anxiety.
Cunningham (2000), who had previously shown the efficacy of psychoeducational programs for the improvement of cancer patients’ quality of life, insisted APT be put on the same
footing as other therapies proposed in medical settings. He stressed the need for more research for
APT to become a common evidence-based medical practice.
Most recently, Morrey and Greer published an Oxford guide for CBT treatment of cancer,
in which they specifically detail APT, its applications and its capacity to enhance quality of life
(2012).
As of yet, no studies have been developed to prove the effectiveness of CBT in Vietnam,
hence the importance of this seminal research.
Indications and contraindications for APT
APT is best suited for cancer patients experiencing adjustment issues, who are suffering from
mild depression or anxiety (NICE, 2009) or who are experiencing pain management issues (Turk
& Fernander, 1991; Crichton & Moorey, 2002). It has also been proven to help patients in chemotherapy with anticipatory nausea (Watson and Marvell, 1992; Watson, 1993).
In cases where it is combined with pharmaceutical treatment, or where the duration of therapy is
prolonged, patients suffering from severe depression or anxiety disorders, personality disorders,
addiction or major pre-existing relationship issues may also benefit from APT.
Patients with schizophrenia, bipolar disorder, confusion syndrome, amnesia, or dementia are not
suited for this type of therapy (Moorey & Greer, 2012).
METHOD
PARTICIPANTS
Efficacy of APT
Over the course of the last 25 years, several studies have proven the efficacy of APT. Many
research teams from the US, UK and Canada have been exploring different applications of this
therapy for cancer patients, in the hopes of confirming Moorey and Greer’s initial research.
The sample consisted of four female patients, aged 40 to 65 years old diagnosed with
Non-Hodgkin’s Lymphoma. They were all receiving in-patient treatment at the Lymphoma cancer
department of HCMC Oncology Hospital, with a life expectancy prognosis of at least six months
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for patients with early diagnosis, and at least three months for patients with severe or metastatic
cases. Selected patients were those who had at least 11 points on the HADS-A or HADS-D or
both. Informed concent was obtained from each of the four patients.
In addition to the HADS scales, the Cancer Concerns Checklist (CCC) was also used (Harrison et
al., 1994). CCC is a list of fourteen common concerns and patients with a score of four or more
are considered to possibly have signs of anxiety or depression. CCC was used in order to target
which concerns were a priority for each patient.
Patients with a short life expectancy that were too weak to complete the evaluations, or
presenting other mental disorders were excluded from the case study.
MEASURES
Qualitative measures
A qualitative method was used to further support and complete the quantitative results.
Individual appointments were taken to:
PROCEDURE
The first phase of research, before data collection, was the introduction of the study to the medical
team and to the entire medical staff of the department after the outline proposal had been approved by HCMC Oncology Hospital’s board directors and ethics committee. The head nurse was
designated as the exclusive supervisor and administrative support.
•
Collect administrative information about the patient involved (name, sex, age, profession,
living situation, personal context…)
The research was then introduced to the patients who had agreed to participate and an introduction
to the research as well as a letter of consent were sent to them.
•
Collect information about the patient’s current problems: history of the patient, history of
the disease…
•
Examine patient’s adaptability, their knowledge and thoughts about the disease and their
resources (support, caregivers…)
Once the letter of consent was signed, the HADS was administered and we explained to patients
that they would also fill it out at the end of the five therapy sessions. Afterwards, the content of
the individual sessions was explained to participants and schedules were decided upon with each
person.
Specifically, a semi-directional personal interview was used to help patients express feelings and
feel free to give feedback through open-ended questions based on our research hypotheses. The
interview questionnaire included:
•
•
•
•
•
•
•
Biographical information and current situation
How are you coping with cancer?
What are your thoughts about cancer and death?
What is your relationship with your family members/care givers like?
Questions about the details of their concerns
Questions about the details of their mental adjustment
Questions about the details of HADS (Hospital Anxiety and Depression Scale-Anxiety).
Quantitative measures
The HADS-A (Hospital Anxiety and Depression Scale-Anxiety) and The HADS-D (Hospital
Anxiety and Depression Scale-Depression) were administered during the first and last session of
the 5-week therapy program.
HADS is a scale composed of fourteen sections and was originally developed by Zigmond and
Snaithin (1983). Seven sections are used to measure anxiety (2, 4, 6, 8, 11, 12, and 14) and seven
others to measure levels of depression (1, 3, 5, 7, 9, 10, and 13). This scale allows the therapist
to pinpoint the severity of each symptom (scored from 0 to 3 for each item). HADS scores range
from 0 to 21 for both anxiety and depression: up to 7, patients are considered to have low levels
of anxiety or depression, from 8 to 10 they are considered to be “borderline” cases and cases with
a score of more than 11 are considered to have severe symptoms.
HADS is quickly administered, lasting about five minutes, and patients answer based on their
feelings over the past week. Before this research, it had previously been used with cancer patients
(Moorey et al., 1991). It was translated into Vietnamese by professional interpreters working in
the field of clinical psychology for the purpose of this research. This translation is not official
and the reliability and validity of this scale have not been established in Vietnam. Therefore, the
researcher will keep these limits in mind while discussing the results of this research.
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Depending upon the situation and the problems that patients encountered, individual interventions were planned. Therapy sessions, lasting 45 to 60 minutes, continued after the last official
session of APT if deemed necessary. During each therapeutic session, targeted symptoms were
reevaluated and feedback was collected. Homework assignments were given and the end of each
hour.
This study was implemented over a five-week period instead of the recommended eight
weeks because some difficulties were encountered for the approval of this research at the hospital.
However, patients continued to be treated until the end of the psychotherapy process, with goals
based on the issues identified throughout the course of therapy, even if these final results could not
be integrated into this research paper.
RESULTS
Results show that all four patients had anxiety and depression scores of 14 or higher (considered
to be severe as they were <11):
•
Patient 1 had the most severe depression symptoms with a HADS-D sub-scale score of 21/21pts.
This patient also had the most severe levels of anxiety with a HADS-A sub-scale score of 19/21pts.
•
The other three patients had moderate anxiety with HADS-A sub-scale scores of 17/21pts and
mild to moderate depression with HADS-D sub-scale scores of 14/21pts.
After five APT sessions:
• Patients 1, 3 and 4 had anxiety scores at borderline level (10, 8, and 10pts respectively) and
Patient 2 had no more anxiety.
•
Patients 1 and 4 still had significant HADS-D scores (14 and 11 respectively), Patient 2 had
a depression score at borderline level (HADS-D=9) and Patient 3 had no more depression
(HADS-D=7).
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The patient's problems are defined as follows:
•
•
•
•
•
In general, all four patients benefitted from these five therapy sessions. Their levels of anxiety and
depression decreased, albeit at different rates. The qualitative analysis also showed that quality of
life was significantly improved, especially concerning sleep and pain management.
CASE STUDY
Anxiety about disease and death
Lack and loss of sleep
Regret and self-blame for not being in treatment one year ago
Worry about the family’s financial situation and the future of her children
Lack of support from the relatives (especially sons)
After having recorded her dysfunctional and automatic thoughts, breathing and relaxation exercises were introduced in the last twenty minutes of each session. After five sessions, the patient
had adapted to the hospital environment, no longer cried when thinking about the disease, nor
blamed herself for not following treatment earlier and tried to focus only on the present. She was
also able to sleep better, felt less pain and was less anxious than previously.
In summary, before APT, the patient had mild depression symptoms and moderate to severe anxiety symptoms. After 5 sessions of therapy, the patient was able to reduce these symptoms.
However, she still needed 3 months of therapy after these initial sessions.
DISCUSSION and Limitations
D.T.T, a 59 year old farmer from the province of Long An, lives with her husband and three sons.
Her husband is recovering from meningitis, which prohibits him from working, and the family
has had financial difficulties since D.T.T. became the primary breadwinner.
She finally decided to go to HCMC Oncology Hospital, where doctors diagnosed her with an
advanced metastatic form of breast cancer, with metastases also found in her lymph nodes and
liver. She was then transferred from Breast cancer Department to the Lymph nodes Department
on 15/07/2014 accepted to be a part of the study on 19/07/2014.
Although results were recorded after only five sessions of treatment, all four patients presented
significant changes in their levels of anxiety and depression. Unfortunately, this limited sample
cannot allow us to confirm the effectiveness of APT for cancer patients in general in Vietnam.
This research is only a pilot study, whose main goal is to introduce the notion that psychotherapy
is a necessary component of cancer treatment, for patients as well as their relatives. Indeed, this
research was set up in a country where most physicians believe that lymphoma cancer patients do
not have psychological difficulties, anxiety or depression.
During the course of this study, it was found that the participants, just like other cancer patients,
were worried about their health status and treatment costs, and were overwhelmed with thoughts
about death. All of these concerns generated anxiety, depression and insomnia. Coupled with
the side effects of medication and pain due to illness, it is clear that patients and their family
desperately need psychological support. It could be interesting to specifically analyze the major
themes of depression or anxiety and APT’s effectiveness for each of them, in a future study. It is
also important to train more physicians and psychologists, to facilitate the implementation of such
programs and to allow supervision for professionals in Vietnam.
She was quite depressed, and cried easily at the very mention of cancer. She experienced severe
body aches, especially in the areas where tumors were growing. When walking around the department, she was unable to find other people with such an advanced stage of cancer, which created a
lot of anxiety. Sleep was difficult as her pain was quite severe and her anxious rumination brought
on insomnia. When she thought of treatment costs, she felt like a burden to her family and blamed
herself for not getting treatment sooner.
We realized that three out of four patients, who all had the same initial levels of anxiety and
depression, benefitted from APT differently as their scores were notthe same at the end of the five
sessions. It seems that some factors influenced these results: financial situation, relationship with
family members, use of drugs, knowledge of acquired disease, etc. In order to better interpret and
control these influences, future research needs to examine the impact of these factors on psychological support results.
She also felt gratitude for her husband because he spent all of his time caring for her. Thinking of
her three sons also generated anxiety, as they were all over 30 years old, not yet married, and had
no children. Despite being dependent on her financially, her children were quite indifferent, which
frustrated D.T.T. and made her wish she had had girls.
Creating the research sample was also quite a task. Fifteen patients were initially chosen, but
all seven male patients categorically refused to participate stating that they had absolutely no
psychological issues. Their wives and their relatives also agreed that they did not need specific
support. Among the remaining eight female patients, three initially agreed but then withdrew due
to severe pain and exhaustion and another woman did not complete treatment due to incompatible
schedules. The difference in perceived need for psychological support depending upon gender
should also be the object of further research.
She was diagnosed with breast cancer a year ago, but refused to seek treatment when she heard
that the total cost was approximately 100 million Vietnamese Dong. As the family had no money,
she worried that her hospitalization would further worsen their financial situation. She decided to
take traditional medicine instead. When she was evaluated in April 2014, the disease had become
quite severe and she assessed her pain at 10/10. Originally in the breast, her cancer had spread to
the back of neck, shoulders, arms and armpits.
The more she focused on her fear of death, the more she was unable to sleep. She sometimes
looked forward to injections, hoping that the doses would take her life. When she was evaluated,
she had not yet been put on any form of medication or chemotherapy, and was afraid that none
would work. This somehow relieved her as she thought that she would leave the hospital sooner
and save money.
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Often, the majority of APT studies evaluated the treatment outcomes after eight weekly therapy
sessions or an average of six to twelve weekly sessions. However, after having implemented APT
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over a course of only five sessions, significant positive changes were found. It is possible that APT
has a great effect with fewer sessions in Vietnam because psychotherapy is still new. It would be
interesting to further study the impact of the number of sessions on the efficacy of APT for cancer
patients.
Finally, there is still no standardized scale for anxiety and depression for cancer patients in Vietnam. Therefore, when conducting this study, it was difficult to choose a reliable scale. We knew
that the HADS had been used by many international researchers in their studies about cancer,
but it was not yet standardized in Vietnam. As our results were derived from a non-standardized
scale, they are less conclusive. To try to compensate this issue, expert interpreters were asked to
translate the scale and three clinical psychologists proofread it before it was used.
Furthermore, the qualitative and quantitative results seem compatible concerning levels of anxiety and depression in this study sample. These results support the idea that the HADS scale
needs to be standardized in Vietnam, but that the use of the current data as a reference was not
problematic. Also, according to Morrey and his colleagues (1991), the HADS scale can be split
into two sub-scales measuring anxiety and depression. Thus, these two sub-scales could be used
independently the Vietnamese context.
During the studies, it was found that patients’ relatives also had anxiety and depression issues
and required psychological support. For example, Patient 1’s sister had a depression relapse when
she discovered that her sister was ill. She suffered from severe insomnia and was admitted to a
psychiatric ward. On the morning following her sister’s admission to our hospital, she had panic
symptoms and uncontrolled behaviours. The second example is Patient 3’s husband: following
the onset of treatment, he started having depression and insomnia symptoms, and his health also
deteriorated.
The issue of the impact of cancer on relatives is quite important in Vietnam because family members generally become primary caregivers, whereas in other countries nurses often come to the
home. They have little caregiving skills and knowledge of the disease, and must often leave their
jobs to assure this informal role, which often causes more stress.
When discussing symptom relief with patients and their relatives, we noted that spirituality and
religion often played an important role. Indeed, two patients were atheist but converted to Buddhism after their diagnosis, as they believed it could only be explained by karma, that is to say a
debt in their previous life. In the Vietnamese context where psychologists and social workers
are not available in hospitals, is a therapeutic approach that integrates spirituality important for
patients? These are ideas for follow-up research which may concern spiritual support for cancer
patients and the role of spiritual life during the treatment period.
Conclusion
In conclusion, both quantitative and qualitative analyses show that APT was beneficial for all four patients,
at varying levels. This research, which was approved by the board of the EPP and UPNT (Ecole de Psychologues Praticiens and Pham Ngoc Thach Medical University) to ensure its feasibility and scientific nature,
shows that levels of anxiety and depression were significantly decreased and quality of life was improved in
areas such as sleep and pain management.
As this study was only conducted on a small sample, its results cannot yet be generalized. That being said,
they confirm the need for treatment for patients with lymphoma in Vietnam, who suffer from the difficult
medical process and thus benefit from psychological support.
Despite these efforts, the dominant culture, social context and economic conditions are not favorable to the implementation of such protocols in Vietnam. Indeed, the role of psychologists is still very new
in the Vietnamese hospital environment and conditions are not optimal for therapy sessions due to noise
and lack of space for one on one psychological interventions. This research constitutes the first attempt to
evaluate the efficacy of APT for cancer patients. The objective was to show that cancer patients being treated
at Lymphoma Department of the HCMC Oncology Hospital have a need for psychological support throughout their treatment processes, and that APT could reduce their psychological difficulties. Hopefully, these
promising results will help these types of treatments to be more widely applied and will allow Vietnamese
psychologists to ensure the critical role they have to play in cancer treatment.
Psychology in Vietnam: difficulties pertaining to the implementation of research
Many difficulties were encountered during the research process, even though HCMC Oncology
Hospital was considered to be a favorable place to set it up, which shows how difficult it is for
these types of studies to be implemented in Vietnam.
Firstly, collecting data and meeting patients was problematic at times. We expected it would take
no more that two to four weeks to identify the participants but this process lasted three months
due to hospital administration. It was necessary to also wait one month to receive final approval
of the outline made by the head director of the hospital as well as the the head of the Lymphoma
Department. Data collection was set to begin in February 2014, but only began in June 2014.
Next, we were not given full freedom concerning the choice of our participants. It was initially
thought to be better to work with breast cancer patients, but the head of the hospital insisted on the
Lymphoma Department. We were also only allowed to work with patients who had been treated
by the vice-dean of said department. As all male participants refused to participate, this left only
women. Initially, it was thought to be better to choose only patients living in Ho Chi Minh City,
to be able to continue treatment after the five weekly sessions, but the majority of patients at hand
lived elsewhere. Due to the deterioration of three participants’ health and an incompatibility of
schedules with a fourth patient, only four others were selected for final data analysis.
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