qol of ex-leprosy patients’ children in vietnam
TRANSCRIPT
Introduction
Background of Vietnam’s leprosy villagesVietnam…established…leprosy…villages…to…accommodate…ex-leprosy…patients…and…their…families.…While…most…resi-dents… in… these…villages…have…already…been…cured,… they…have…to…remain…there…for…lengthy…periods…because…of…the…
stigma…around…the…disease.…The…Vietnamese… leprosy…villages…were… founded…by…overseas…Catholic…missionaries…to…cater…to…patients…with…leprosy…who…had…been…excluded…from…their…own…com-munities…and…were,…therefore,…out…on…the…streets.…In…the…1920s,… two… leprosy…villages…were…opened… in…Vietnam:…Di…Linh… leprosy…village… in…the…Lâm…Ðồng…province…and…Quy…Hoa…leprosy…village…in…the…Bình…Ðịnh…province.…Cur-rently,…Vietnam…has…26…leprosy…villages.According…to…Bang,…the…Vietnamese…government…does…not…have…any… segregation… law,…and… it… is… the… leprosy…patients’…choice…to…move…to…the…leprosy…villages1).…Most…of…these…patients…lose…their…homes…and…families…because…of…the…discrimination…against…the…disease,…though…many…
QoL of ex-leprosy patients’ children in Vietnam
Hiroyuki WATANABE *1), Vu Tuan Anh 2), Huynh Cong Ai 2), Tran Xuan Vy 2), Tran Sy Duy 2), Tran Quang Tien 2) and Ho Thu Linh 2)
1) Niigata College of Nursing 2) Quy Hoa National Leprosy Dermatology Hospital
[Received: 26 July, 2019 / Accepted: 7 July, 2020]
Key words: Quality of Life (QoL), leprosy, children, Vietnam
In Vietnam, ex-leprosy patients and their families are housed in villages called leprosy villages. The aim of this study was to measure the quality of life (QoL) of ex-leprosy patients’ children who live in these leprosy villages with their families, using the Kid-KINDLR (Vietnamese version). We collected and analyzed data from 105 individuals (58 ex-leprosy patients’ children and 47 control group children). The results showed that the scores of the ex-leprosy patients’ children in terms of physical health and having friends, as well as their total scores, were significantly lower than those of the control group. However, no significant differences were in the scores for primary school, self-esteem, and family relationships though ex-leprosy patients’ children scored significantly lower in the secondary school category. Moreo-ver, the male children in the ex-leprosy patients’ children group in secondary schools had significantly lower scores in the self-esteem and family relationship categories than their female counterparts. The results also showed that the QoL of ex-leprosy patients’ children diminished after secondary school, which necessitates support for their physical health, self-esteem, and family relationships. Meanwhile, the academic achievement of ex-leprosy patients’ children was higher than that of those in the control group in upper secondary school, who therefore required socioeconomic support to foster motivation of ex-leprosy patients’ children to study and to move on to higher education.
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*Corresponding author:Niigata College of Nursing240, Shinnan-cho, Joetsu city, Niigata, Japan, 943-0147Tel & Fax: +81-25-526-3108E-mail: [email protected], [email protected]
of… them…find…new…spouses,…give…birth,…and…start…new…families…in…these…leprosy…villages.
Problems and conflicts of ex-leprosy patients’ childrenThe… children…born… in… leprosy… villages…often… face…discrimination,… school… and…workplace…bullying,… and…violence…when… they…come… in…contact…with…communi-ties…outside…the…village.…According…to…a… leprosy…village…director…in…South…Vietnam,…ex-leprosy…patients’…children…suffer…from…physical…weaknesses…and…attachment…disor-ders.…The…director…also…noted…that… these…children…may…also…suffer…from…physical…and…mental…vulnerabilities.WATANABE…studied…the…challenges…faced…by…ex-lep-rosy…patients’…children…in…four…leprosy…villages…in…South…Vietnam…and…found…that,…despite…not…having…the…disease,…these…children…are…often…involved…in…some…kind…of…school…or…workplace…trouble…just…for…living…and…growing…up…in…leprosy…villages2).…These…experiences…may…cause…mental…illnesses… in…these…children2).…Enwereji…et…al.…also…found…that…ex-leprosy…patients’…children…were…isolated…from…the…community…and…felt…discriminated…against3).…The…results…of… these… studies… shed… light…on… the… issues…ex-leprosy…patients’…children…face,…necessitating…a…need…to…find…what…other…life-related…problems…they…face.…
Objective
The…aim…of…this…research…is…to…identify…the…contributing…factors…to…the…inherent…problems…and…mental…conflicts…of…ex-leprosy…patients’…children…by…measuring…their…quality…of…life…(QoL)…and…using…the…results…to…improve…the…overall…health…of…these…children.
Material and method
QoL concept: Kid-KINDLR
Ravens…and…Bullinger…described…QoL…as…one’s…subjective…perception…of…his/her…physical,…mental,…social,…psychologi-cal,…and…functional…aspects…of…well-being…and…health4).In…this…study,…we…used…the…Vietnamese…version…of…the…
Kid-KINDLR…to…measure…the…QoL…of…ex-leprosy…patients’…children.…Kid-KINDLR… is… a…widely…used… tool…with… six…subscales…for…measuring…children’s…health-related…QoL.…These…subscales…are…physical…well-being,…emotional…well-being,…self-esteem,…family,… friends,…and…school… (Fig.…1).…The…scores…of…each…subscale…lie…in…the…0–100…range.
Details of Village AThis… study…was… conducted… in… a… leprosy… village…
(hereafter…Village…A)… that… is…affiliated…with…Hospital…A…in…Vietnam.…As…at…2018,…Village…A…had…429…ex-leprosy…patients…(256…families)…and…220…children.…Of…these…chil-dren,…40…were…in…kindergarten,…60…in…primary…school,…48…in…secondary…school,…29…in…upper…secondary…school,…27…in…the…university,…12…in…college,…two…in…vocational…school,…and…two…in…other…institutions.Village…A…has…a…primary…school… for…children,…but…no…
secondary…or…upper…secondary…schools…are…affiliated…with… it.…Therefore,…after…finishing…primary…school,…chil-dren…must…go…to…a… local…secondary…school…outside…and…far… from…the…village.…Therefore,… to…address… the… lack…of…public…transportation,…Hospital…A…offers…the…children…free…bus…rides…to…school.
Method
The…support…and…cooperation…for…this…research…were…provided…by…a…self-governing…patient…group… in…Village…A…and…Hospital…A.…To…avoid…forced…participation… in…the…study,…the…group…introduced…ex-leprosy…patients’…children…who…voluntarily…took…part… in…this…research.… In…addition,…the…children…were…given…small…gifts/novelty… items…for…their…participation.…We…also…recruited…children…of…hospital…A’s…staff…who…were…willing… to…participate… to… form…the…control…group.…Hospital…A…staff…commute…from…various…districts… in… the…city…and…their…children…attend…various…schools,…therefore,…we…interpreted…the…characteristics…of…these…areas…as…being…reflected…in…the…control…group.…Both… groups…were… classified… by… school… type… and…
gender.… In…Vietnam,…children…start…primary…education…at…the…age…of…six…and…complete…it…at…the…age…of…11.…Sec-ondary…education…consists…of… four…grades…and…covers…children…aged…12–15,…whereas…upper…secondary…educa-tion…comprises… three…grades… involving…children…aged…15–18.
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Fig. 1 Each Kid-KINDLR sub-scale
Data…were…collected… from…August…2016… to…August…2018…by…community…health…workers…and…nurses…of…Hos-pital…A…and…were…analyzed…by…this…paper’s… first…author…using…SPSS…version…24…(IBM…Corp.,…Armonk,…NY,…USA)…at…5…percent… level…of…significance.…Free…responses…and…opinions…related…to…the…Kid-KINDLR…questionnaire…were…also…collected…and…categorized…according…to…content.…
Ethical considerationThis…research…was…given…ethical…permission…by…Hospi-tal…A…and…the…self-governing…patient…group…in…Village…A.
Results
Data…were…collected… from…105…respondents:…58…ex-leprosy…patients’…children…(Male…28,…Female…30)…and…47…control…group…children…(Male…21,…Female…26).…The…aver-age…age…of…the…respondents…is…12.9…years…(SD…±…2.490,…7–18…years…old):…13…for…the…ex-leprosy…patients’…children…(SD…±…2.248)…and…12.79…for…the…control…group…children…(SD…±…2.781).
Comparison of sub-scales: all agesWe…found…significant…differences…between… the… two…
groups…in…physical…health,… friends,…and…total…score…cat-egories… (p<.01,…Fig.…2).…With…respect… to… the…subscales,…
the…scores…of…ex-leprosy…patients’…children…were… lower…than…those…in…the…control…group…(Fig.…2).…
Comparison by school typeComparison…of…primary…school…childrenFor…primary…school…children,…no…significant…differ-ences…were…found…in…both…groups…(Fig.…3).…
Comparison…of…secondary…school…childrenAfter…comparing…secondary…school…children… in…both…groups,…we… found… significant…differences… regarding…physical…health…and…total…score…(Fig.…4).…The…ex-leprosy…patients’…children…scored…lower…than…those…in…the…control…group…(p…<.01,…Fig.…4).…We…found…outliers…under…the…lower…fence…in…the…family,…friends,…and…school…subscales…in…the…results…of…ex-leprosy…patients’…children…(p…<.01,…Fig.…4).…
Comparison…of…upper…secondary…school…childrenAfter…comparing…upper…secondary…school…children…in…
both…groups,…we…found…significant…differences…regarding…physical…health…and…school.…Ex-leprosy…patients’…children…scored…lower…in…physical…health…(p…<.01,…Fig.…5),…but…their…scores…in…the…school…subscale…were…significantly…higher…than…those…in…the…control…group…(p…<.01,…Fig.…5).
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Fig. 2 Comparison of ex-leprosy patients’ children and control group children – all ages**p <.01n = 105 (Children of leprosy patients: 58, Children from control group: 47)
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80.3 93.1 80.8 84.0 55.9 57.2 76.1 79.3 70.9 78.7 58.4 56.8 70.4 74.8
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Gender…differences…among…ex-leprosy…patients’…childrenA…gender-based…comparison…of…ex-leprosy…patients’…
children…group…members…showed…that…the…male…children…scored…significantly… lower… in…the…family…category…than…their…female…counterparts…(p…<.05,…Fig.…6)Regarding…primary…school…children,…no…significant…gender-related…differences…were…found…in…each…subscale…(Fig.…7).…However,…when… ex-leprosy… patients… children… in…
secondary… school… and… upper… secondary… school…were… combined… (adolescent… group)… and… tested… for…gender-related…differences,… the…male…children…scored…significantly…lower…than…the…female…children…in…the…emo-tional…and…self-esteem…categories…(p…<.05,…p…<.01,…Fig.…8).
Free…answers…and…opinion… from…ex-leprosy…patients’…children…The…contents…of…the…collected…free…responses…and…opin-
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86.7 96.3 77.5 81.7 65.4 72.5 82.1 83.4 61.3 72.9 62.9 65.9 72.6 78.8
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Fig. 3 Comparison of ex-leprosy patients’ and control group children (Primary school)n.s.n = 30 (Children of leprosy patients: 15, Children from control group: 15)
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78.2 93.0 82.5 87.9 51.4 48.9 73.8 78.3 72.0 77.2 56.1 54.4 69.0 73.3
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Fig. 4 Comparison of ex-leprosy patients’ and control group children (Secondary school)**p <.01n = 30 (Children of leprosy patients: 31, Children from control group: 17)
ions…that…relate… to… the…main…questions…were…classified…into…five…categories:…physical…problems,…emotional…prob-lems,… self-esteem,… family,…and… friends.…Family-related…responses… and… opinions…were… further… divided… into…positive…and…negative…comments…(Table…1).…There…were…seven…such…negative…comments:…one… from…a…primary…school…child…and…six… from…secondary…school…children.…Meanwhile,…there…were…five…negative…comments…regard-ing…friends,…all…from…primary…school…children.
Discussion
General condition of ex-leprosy patients’ children We…found…significant…differences…regarding…physical…
health,… friends,…and… total…score…after…comparing…both…groups…across…all…ages.…The…physical…health…scores…of…ex-leprosy…patients’…children…were…especially… lower… than…those…of…the…control…group.…
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77.6 90.0 80.8 82.1 55.8 51.3 74.5 76.3 80.2 86.3 58.9 50.4 71.3 72.7
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Fig. 5 Comparison of ex-leprosy patients’ and control group children - Upper secondary children **p <.01n = 27 (Children of leprosy patients: 12, Children from control group: 15)
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83.9 76.9 78.4 83.2 52.5 59.2 71.7 80.2 68.6 73.2 56.5 60.2 68.6 72.1
Male MaleFemale MaleFemale MaleFemale MaleFemale MaleFemale MaleFemale Female
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Fig. 6 Comparison of each sub-scales by gender (ex-leprosy patients’ children)*p <.05,n = 58 (Male: 28, Female: 30)
We…also… found… some… low…outliers… in… the…physical…health,…emotional…problems,…and…friends…subscales…in…the…ex-leprosy…patients’…children,…and…extremely…low…outliers…in… the…physical…health…and…emotional…problems…sub-scales…among…ex-leprosy…patients’…children.…This…means…some…of… these…children…have…physical…and…emotional…health… issues.…We…checked…the…presence…of…chronic… ill-nesses… in… the…ex-leprosy…patients’…children…group…and…found…that…seven…of…the…58…patients…reported…a…chronic…illness,…with…five…of…them…having…physical…health…scores…below…the…median.The… free…answers…and…opinion… from…the…ex-leprosy…
patients’… children… indicated… that… some…of… them… take…medication…for…stomach…pain.…Family-…and…friendship-related…stress…and…anxiety…may…be…one…of…the…factors…that…contribute…to…their…poor…physical…and…mental…health.Based…on…these…results,… the…ex-leprosy…patients’…chil-dren…would…benefit… from…regular…physical…and…mental…health…checks.
Differences by school typesWe…did…not… find…any…significant…difference…between…
primary…school…children…in…both…groups.…It…can…be…said…that…the…QoL…of…ex-leprosy…patients’…children…remained…
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88.9 83.4 75.0 81.3 66.0 64.6 81.3 83.4 59.0 64.6 61.8 64.6 72.0 73.6
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Fig. 7 Comparison of each sub-scales by gender (Primary school students in the ex-leprosy patients’ children group)n.s.n = 15 (Male: 9, Female: 6)
Fig. 8 Comparison of each sub-scale by gender (adolescent group [12-18 years old] in ex-leprosy patients’ children) *p < .05, **p < .01 n = 43 (Male; 19, Female; 24)
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81.6 75.3 80.0 83.6 46.1 57.8 67.1 79.5 73.1 75.3 54.0 59.1 66.9 71.8
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favorable…at… the…primary…school… level…but… fell…as… they…grew…older.…The…QoL…of…ex-leprosy…patients’…children…is…characterized…by…vulnerability…in…the…physical…health…and…friendship…categories,…but…it…can…be…said…that…this…trait…is…already…evident…from…the…primary…school…stage.As… for… the…secondary…school…children…of…ex-leprosy…patients,… there…were…significant…differences… in…physical…health…and…total…score,…and…also…outliers…under…the…lower…fence…in…the…distributions…among…the…family,…friends,…and…school…subscales… (Fig.…4).…These…outliers… indicate… that…some…children…live…under…poor…conditions…or…face…family-,…friends-,…or…school-related…difficulties.…We…inferred…from…the…results…that…the…QoL…of…ex-leprosy…patients’…children…may…deteriorate…at…the…secondary…school…level.
Ex-leprosy…patients’… children… in…upper… secondary…school…scored…lower…than…their…control…group…counter-parts…in…the…physical…health…category,…but…scored…higher…in… the…academic…achievement… category… (Fig.…5).…The…school…category…consisted…of…four…questions…that…centred…on…schoolwork,…whose…responses…represented…the…chil-dren’s…learning…and…achievement.…Two…factors…may…have…contributed…to…the…significant…differences…between…the…ex-leprosy…patients’…children…and…the…control…group…children.First,…the…scores…of…the…children…in…the…control…group…declined… from… secondary… school… to… upper… second-ary… school,…while… that… ex-leprosy…patients’… children…increased.Secondly,…many… children… from…Village…A…work… as…
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Table 1 Free answers and opinion from the ex-leprosy patients’ children1. Physical problems (n=2) Sex Age School type
・I need to take medicine for stomach pain. F 8 Primary・I have to take medicine because of stomach pain. F 12 Secondary
2. Emotional problems (n=6)・One day I saw very angry faced man, it's really looked scary. Then I getting scared for a while. F 8 Primary・I worried about my future for those days (e.g., school fee). F 12 Secondary・Sometimes, I didn’t want to go to school. M
MMF
10101112
PrimaryPrimarySecondarySecondary
3. Self-esteem (n=3)・I am happy with and proud of helping housework for my family. F 10 Primary・I could solve the difficult math problem and have proud of it. M 10 Primary・I could never have a self-confidence about myself. F 12 Secondary
4. Family (n=11)Positive comments
・I feel happy while I staying in my house. M 10 Primary・I washed dishes. M 11 Primary・I often did housework for family. F 13 Secondary・I bought a present for my parents. F 13 Secondary
Negative comments・ After back home, I want do some things by myself. but my parents always say to me “It's late today” and
stop me to do.M 10 Primary
・I wanted to go to sea to play, but my parents did not allow me to go because it is dangerous. M 11 Primary・The other day, I got into an argument with parents about study. F 12 Secondary・For my parents, I can't express about how do I feels or opinion freely. F 13 Secondary・ I wanted to go to school by bicycle, but parents did not allow me to go because it might be involved in a
traffic accident.F 13 Secondary
・I did a lot of housework last week, but I argued with parents every day. F 13 Secondary・I wanted cook by myself, but my parents not allowed me to cook. F 13 Secondary
5. Friends (n=7)Positive comments
・I have 11 friends, they are really good friends. M 11 PrimaryNegative comments
・There are 10 friends around with me, but only two friends play with me. F 8 Primary・I go to school in the village, but only one friend play with me in the classroom. F 8 Primary・Few friends played with me in these days. M 10 Primary・In these days, I felt lonely because no one play with me. M 10 Primary・If my friends don't play with me, I play by myself. M 10 Primary・I wanted play the game with friends, but rule was so difficult and I couldn't play with my friends. M 11 Primary
nurses,…doctors,…and…co-medical…workers.…These…occupa-tions…are…familiar…to…them…and…when…they…think…about…their…futures,…these…occupations…are…likely…to…be…part…of…their…choices.…The…pursuit…of…a…specific…career…can…be…interpreted…as…
resulting… from…improved… learning…performance.…How-ever,…some…members…of…the…ex-leprosy…patients’…children…group…are…not…motivated… to… study… and… their… future…prospects…are…unclear.…This…will…engender…poverty… for…ex-leprosy…patients’…families…if…these…conditions…are…not…improved.…We…opine…that…academic…support…and…career…advice…these…children…is…necessary.…This…is…in…addition…to…financial…support…as…most…ex-leprosy…patients’… families…are…poor…and…cannot…afford…to…provide…further…education…to…their…children.Moreover,… some…ex-leprosy…patients’… children…may…have… learning…difficulties,…be…unable… to…chart…a…clear…vision…of…their…future.…For…this…reason,… it… is…also…neces-sary…to…have…opportunities…to…consult…with…such…children…about… their…daily… learning…support…and… future…career…plans.
Differences by gender in ex-leprosy patients’ children We…found…no…significant…gender-related…differences…between…ex-leprosy…patients’…male…and…female…children…in…the…primary…school…category…(Fig.…7).…However,…there…is…a… lot…of…variance…in…the…following…sub-scales…in…male…group…of…ex-leprosy…patients’…children:…emotional,…self-esteem,…family,… friends,…school,…and…total…score,…as…well…as… lower…outliers…and…extremely…low…scores…in…physical…and…emotional…(Fig.…7).… In…this…regard,…we…inferred…that…males… in… the…ex-leprosy…patients’…children…group…had…the…germination…of…various…problems…from…the…primary…school…stage…(Fig.…7).Also,… from…primary…school…to…adolescence,… the…male…
children’s…emotional…and…self-esteem…scores…were…sig-nificantly…lower…than…those…of…the…female…children…(Fig.…8).…Previous…studies…have…found…that…the…QoL…of…female…children… falls…during…adolescence5-7).… The… children’s…physical…and…mental…well-being…appear…to…worsen…with…age,…more…so…for…the…female…than…for…male…children8).…A…study…that…examined…changes…in…QoL…among…Span-ish…children…and…adolescents… found… lower…QoL… in… the…physical…and…psychological…well-being,…autonomy…and…parental… relationships,… social… support…and…peers,…and…school…environment…categories,…and…these…changes…were…
more…pronounced…among…female…than…male…and…older…(13-17…years…old)…participants9).Although… the…data… in… this… study…were… limited,… the…
results…are…quite…different…from…those…of…previous…studies.…This…study…found…a…trend…towards… lower…QoL…in…males…than… in… females…during…adolescence,…especially…under…the…emotional…and…self-esteem…categories,…which…were…significantly…lower.…These…results…suggest…that…the…results…of…previous…studies…may…be…constrained…by…regional…and…cultural…factors.…However,… the…present…study…could…not…determine… the…contributing… factors… to…QoL…decline… in…males…from…the…ex-leprosy…patients’…children…group.In…the…case…of…females,…we…found…that…the…decline… in…
QoL…may…be…due… to… the…societal…demands…placed…on…females5)…and…subsequent…vulnerability…to…physical…and…psychological…health…challenges10).… In… this… study,… the…presence…of… inherent…vulnerability…manifested…itself…as…a…decline… in…self-esteem… in… the…males… in… the…group…of…children…of…former…patients.Compared…with…the…female…group,…adolescent…males…
may…experience…difficulties…expressing…their…feelings…or…mental… issues…to…others,…as…adolescent…children…experi-ence…mental…distress…and…anxiety.…Therefore,…regardless…of… the…gender,…ex-leprosy…patients’… children…need…an…opportunity,…place,…and…mentor…with…whom…they…can…speak…to…improve…their…QoL…and…regain…their…self-esteem.…Also,…maintaining…a…high…quality…of… life… for… females… is…effective…for…health…promotion…in…the…leprosy…village…and…social…inclusion…for…female…children.
Self-esteem One…remarkable…finding… in…both…groups… is… their… low…
self-esteem.…In…both…groups,… the…self-esteem…peaks…are…found…at…the…primary…school…level,…and…declines…as…they…grow…older.…The…onset…of…adolescence…occurs…between…the…primary… to…secondary…school…age.…This…period… is…characterized…by…family-,…friends-,…and…school-related…dif-ficulties.…Hosogi…et…al.…describe…self-esteem…as…the…“feeling…of…self-appreciation”…and…an…indispensable…emotion…for…people…to…adapt…to…the…society…and…live…their…lives11).…For…humans,…adolescence…is…a…period…of…transition…from…child-hood…to…adulthood.…According…to…Arnett,…the…beginning…of…adolescence…brings…about…many…changes;…therefore,…it…is…often…referred…to…as…a…period…of…“storm…and…stress”…12).…Many…studies…have… found… that…self-esteem…changes…
as…children…grow,…and…low…self-esteem…is…often…observed…
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during…adolescence.…Huajian…C.,… in…a… study… involving…junior…and…senior…high…school…students…in…East…China…(n…=599),…concluded… that… implicit… self-esteem…decreases…with…advancing…age…during…adolescence13).…Moreover,…children’s…mental… conflicts… can…be… resolved… through…support… that… is… tailored… to… their…different…emotional…development…stages.…
Results from free responses
Difficulties in getting along with friends and familyConflicts…against…familyWe…found…negative…comments…regarding…family…and…
friends…in…the…free…responses…and…opinions…(Table…1)…of…the…ex-leprosy…patients’…children. The…negative…comments…about… their… families…were…
associated…with…parental… restrictions,… attitudes,… and…communication.…For…example,…a…10-year-old…boy…said…he…often…feels…stressed…when…his…parents…do…not…allow…him… to…do… something… that…he…wants.…A…13-year-old…girl…argued…with…her…parents…every…day,…and…another…13-year-old…girl… found…it…difficult… to…freely…express…her…feelings…or…opinions…to…her…parents.
Difficulties…with…friendsAll…negative…comments…associated…with…friends…were…
from…primary… school… students:… two… from… the…middle…grade…and…three…from…the…higher…grade.…Some…children…felt…lonely…and…experienced…difficulties…in…their…relation-ships…with…friends.…For…example,…an…eight-year-old…girl…reported… feeling… lonely…because…only… two…of…her…10…friends…played…with…her.…Another…eight-year-old…girl…who…went…to…primary…school… in…the…leprosy…village…felt…sad…because…she…only…had…one… friend… to…play…with… in…the…classroom.…A…10-year-old…boy… felt… lonely…because…he…only…had…a… few…friends…who…played…with…him,…and…another…10-year-old…boy…felt… isolated…because…no…one…would…play…with…him…(Table…1).…The…negative…comments…associated…with…friendship…were…mainly…due…to…the…ex-leprosy…patients’…children’s…lack…of…friends…in…school.These…children…attended…primary…school… in… the… lep-rosy…village.…We,…therefore,…assume…that…it…is…not…difficult…for… them…to…make…friends…because… they…share…similar…backgrounds.…However,…while… they…share… these…com-monalities… in…the…leprosy…village,…some…of…the…children…were…worried…about…not…having…close… friends.…These…
children…need…assistance…with…developing…interpersonal…skills… to… foster… friendships.… Furthermore,… peer… and…mentor…support…would…be…vital… in…helping…them…reduce…their…conflict-associated…friendships…and…avoid…worsen-ing…their…loneliness.
Conclusion
A…unique…QoL…feature…of…ex-leprosy…patients’…children…is…their…particular…physical…weaknesses…and…vulnerabil-ity.…We…also…found…that…the…QoL…of…ex-leprosy…patients’…children…vary,…depending…on…their…developmental…stage.…Physical…health… issues…were…mainly… found…at… the…sec-ondary…school… level,…necessitating…the…need…for…regular…physical…and…mental…checkups…for…the…early…detection…of…these…problems…and…the…improvement…of…their…conditions.…
Limitation of this study
This… study…was… conducted… in… a… leprosy…village… in…Vietnam.…Therefore,…its…results…do…not…represent…the…situ-ation…in…other…leprosy…villages.
AcknowledgementThis…work…was…supported…by…JSPS…KAKENHI…Grant…
Number… JP16K04153.…We…would… like… to… sincerely…acknowledge…the…academic…contributions…of…the…director,…Dr.…Vu…Tuan…Anh,…Mr.…Huynh…Cong…Ai,…Mr.…Tran…Xuan…Vy,…Mr.…Tran…Sy…Duy,…Mr.…Tran…Quang…Tien,…Ms.…Ho…Thu…Linh,…the…children…in…Quy…Hoa…village,…and…the…hospital…staff…and…patient…group.…The…authors…would…also…like…to…thank…Enago…(www.enago.jp)…for…the…English…language…review.
Conflict of InterestThe…authors…have…no…conflicts…of…interest…directly…rel-evant…to…the…content…of…this…article.
Reference
… 1)… Bang…P.D.,…Suzuki…K.,… Ishii…N.,…Khang…T.H.:…Leprosy…Situation… in…Vietnam…-Reduced…Burden…of…Stigma.…Japanese…journal…of…leprosy…77:…29-36,…2008.
… 2)… WATANABE…Hiroyuki:…Children…at…Leprosy…Resettle-ment…Village… in…Vietnam:… Their… Conflicts… and…Experience…with…Discrimination…and…Stigma.…The…Bulletin…of…Global…Human…Studies…4:…101-129,…2011.
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… 7)… Torsheim…T.,…Ravens-Sieberer…U.,…Hetland…J.,…Valimaa…R.,…Danielson…M.,…Overpeck…M.:… Cross-National…Variation…of…Gender…Differences…in…Adolescent…Sub-jective…Health…in…Europe…and…North…America.…Soc…Sci…
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Quality… of… Life… (HrQoL)…Changes…over…Time:…A…Three…Year…Longitudinal…Study.…Health…Qual…Life…Outcomes…14:…14,…2016.
… 9)… Palacio-Vieira…J.…A.,…Villalonga-Olives…E.,…Valderas…J.…M.,…Espallargues…M.,…Herdman…M.,…Berra…S.,…Alonso…J.,…Rajmil…L.:…Changes…in…Health-Related…Quality…of…Life…(HrQoL)…in…a…Population-Based…Sample…of…Children…and…Adolescents…after…3…Years…of…Follow-Up.…Qual…Life…Res…17:…1207-1215,…2008.
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ベトナムのハンセン病村に住む子どもたちのQOL
渡辺弘之＊1）、Vu Tuan Anh2)、Huynh Cong Ai2)、Tran Xuan Vy2)、Tran Sy Duy2)、Tran Quang Tien2)、Ho Thu Linh2)
… 1）新潟県立看護大学… 2）国立クイホア・ハンセン病皮膚科病院
〔受付：2019 年 7月 26日、掲載決定：2020 年 7月 7日〕
キーワード：Quality…of…Life（QoL）、ハンセン病、子どもたち、ベトナム
本研究はベトナム国内のあるハンセン病村在住の元患者の子どもたちを対象とし、子どもの包括的健康尺度である
Kid-KINDLR ベトナム語版を用い、その QOL について測定した。また対照群として一般地域の子どもの QOL を測定
した。一般群との比較では身体的健康、友だち、QOL 総得点の項目において元患者の子どもたちのスコアが有意に低
かった。また小学生では両群の間に有意差がみられないが、中学生では身体的健康とQOL総得点、高校生では身体的
健康と学校生活において元患者の子どもたちのスコアが有意に低かった。元患者の子どもたちのQOLスコアを性別で
比較すると、中学生では自尊感情と家族、高校生ではQOL総得点の項目において男子生徒が有意に低かった。元患者
の子どもたちの場合、そのQOLは中学生の時期から低下がみられることから、身体的健康、自尊感情、家族関係に配
慮が必要であることが明らかとなった。
*Corresponding…author:公立大学法人…新潟県立看護大学〒 943-0147 新潟県上越市新南町 240Tel…&…FAX：025-526-3108E-mail…：[email protected],…[email protected]