Akif - Published Article

8/9/2019 Akif - Published Article

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SCHEMA ISSN 1991-8461

Annual Journal of Humanities and Social SciencesVolume 8 Year 2011

CONTENTS

Students' Proficiency Levels in Urdu and English

Abdul Ghajfar Khan Hafiz

11 Training Need Assessment of Special Educators for their l rofessional Dev lopment

A shan Rahat

23 Thalassacmia: Social Stigmatization of Patients and Issues:

Akif Ali Atif Nabeel Ahmad Zubairi

33 Professional Standards for Teaching: A Review of t heRe ; ted Literature

Hameed-Ur-Rehman Mirza Arshad Baig

45 Understanding Image and Reality How Can \\ 'c i\Ianage Image? Pakistan a Case in

Point

59

69

77

91

Bashir Ahmad

Teachers StressFarhat Khanam Sana Akhtar

Use of Pakis tan Sign Language Vocabulary Books L: Students with HearingImpairmentFatima, G.; Ashraf. S.; Yasmeen, S. Akhtar, F

Role of Media for Teachers Working with Attention Def•i t Hyperactivity Disorder

ChildrenM Hameed -Ur-Rehman Munir Moosa Sadmddin

Behavior Modification Techniques Used by the Teachers f Chi ldren with Autism in

PakistanHina Fazal

lOS A Study of English Language Teacher Educators P ram in Sindh Province

Sponsored by USAIDMateen Ahmed; Ismail Saad; Wasim Qazi Khali d Jameel 1 . 1wat

117 Prospective and Retrospective View of ISO Certificatio • in Developing Countries

(With Special Reference to Pakistan)Muhammad Asim Faraz Ahmed Wajidi

135 Change and How to Cope with it?

Murtaza Abbas

145 Knowledge, Opinion and Religious Practices of St u d ~ t s of NED University,

KarachiNaila Usman Siddiqu i Fozia As/am


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161 Special Schools Principals Perspective about Leadership and InclusionNasir Sulman

I 77 Bilingualism in TeachingNaveed hmed

183 Implementation of Public Policies Pre and Post DevolutionSajida Saleem Khan Prof Dr . Syed Abdul Aziz

193 Classroom Communication and Academic Achievement of Children wit : HearingImpairment in Inclusive and Segregated Settings

2 3

217

Sam ina shraf

The Performance of Children with Mental Retardation in Accordance wiC1 Pia get sTheory of Cognitive DevelopmentShaista Naz

Rules for Submission of Paper

Composed : Muhammad A bid Raft Cover Design : Muhammad fiamran

.

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inpr.co,stz. ten,Kafo r :stu.ojlpreUnUrce.ffca.ffeboy.a retEngweagirl :we a

Key Words:


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SC HEM A JSSN I J · H ~

Annual J o urnal of J lu maniti cs and So cial SoencesVo lume 8 Year 2 1

Thalassaemia: Social Stigmatization of Pa t :ents and Issues

by

AKIF ALI ATIFStudent Department o f Sociolog :_ .

University o f Karachi

&

DR NABEEL AHMAD ZUBAlf;_JAssistant Professor

Department o f Sociology, University o f Karachi

Thalassemias are inherited blood diseases that ;ause defectiveor reduced production o f hemoglobin, the molecv .e found inside

red blood cells that carries oxygen through o ut the body.Reduced levels of hemoglobin keep the body f v m producingadequate levels o f healthy red blood cells, a concftion known asanaemia . Thalassaemia are a common form o f g« •wtic disorder .The present article is an attempt to associate ·. e labeling orstigmatization o f Thalassmiac patients . The social stigmatizationcreates not only the barriers in the interaction pa .ern culturally,but also develops serious psychological pressure:; ?n the patientsand their families specially the parents of the diseased. Thepresent study is based on primary data of rl-e thalassemicpatients in one of the treatment centers in Kara h i in relationwith social stigmatization.

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Schema 2 I I

Prevalence of Thalassacmia in Pakistan:

Regarding the reported patients of thalassemia discrepancy prevails, i : an articlepublished in the International News quotes AI-Mustafa Thalas5a:mia UnitProject J)i rector M unaf A I an a as estimating the country's tha lass em ia Jopulationat more than 70,000, with 6,000 children with thalassemia bor .- annually(Cooley Anemia Foundation;2009). According to another source Palcistan has alarge population of more than ISO million people with an oven I c a r r i e r ~frequency of approximately 5.6% for ~ t h a l a s s e m i a .Punjab is 11e largestprovince of the· country having more than 50% of the population. The: state o f ~ -thalassemia is alarming as consanguinity (blood based) is very high c=·81 %) andthe literacy rate is low in South Punjab. A thalassemia prevention prO ;ram is theneed of the hour in this part of Pakistan. In this study, the researche rs initiatedawareness, screening, and characterization of the mutations c: lllsing P-thalassemia as well as a genetic counseling program mainly in the districts ofFaisalabad and D.G. Khan to establish prenatal diagnosis, a facility previouslyunavailable in this region for disease prevention . A total of 4 ~ unrelatedtransfusion-dependent children and the available members of their fa ilies werescreened to characterize the mutations and identify the canie1 · GcndJccounseling was provided to these families (Shahid, 2006) . In another study fivehundred apparently healthy adults from nonhern parts of Punjab and 1-r\VFP werescreened for the prevalence of heterozygous beta-thalassemia. Th = trait wasdetected in all ethnic groups with an overall prevalence rate of 5.4% (27/500).Pathans had significantly higher prevalence rate (7.9G'Vo) than Punjai).;s (3 .26° (Khattak, 1992).

Awareness:

Social dimension of the disease of Thalassemia is evident. To aver: the futurepatients Anita Saxena and Shubha R. Phadke, (2002) finds, family ph.;·::;icians andobstetricians can play an important role in motivating the high -ri ;k groups.Screening of pregnant women along with their spouses shoulc be madecompulsory and free of cost. Genetic disorders, especially thalassaen- .ia and thelike, should become a part of curriculum at the school level, which wi II facilitateerasing the image of this disease as a social stigma (as the public \\.ill be moreadapted to hearing and knowing about the disease. (Anita; 2002). The feelings ofguilt, shame and social stigma are more severe amongst pnents withthalassaemic children since both parents may feel responsible fortran; nitting thegene and this may affect their reactions to their sick child i n f l u e n c i n ~his or herpsychosocial development. Stigmatisation is the effect of labelling 1 person orgroup as having undesirable characteristics (Markel; 1992). [he pub I cawareness about the disease in Pakistan is very poor. Even the parents of

24

t h a l a s ~

2008).

Knowledgimproved'awareness 1

topic in sc.1

health perpresented : ·carrier in JiThe stigm .through griyears and ):

In thalasseare all imp·the prograr. 'and kinshirsystem th3:(Sreeparna; :

Some coun :have laws.mandatorythese coun(even thougfto get marri :a voluntary

Social StigriI

AndroullaE

and parents,far beyond Iproblems. Agenetic herediagnosis wipart of the swhere patientheir very lirdistress, des1countries di(


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1nitiated:;ing ~ --tricts ofcviously1nrelatedies were

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;udy five·fp were·rait was17/500).' (3 .26 )

the future-icians and, k groups.

be made1ia and the

facilitatedl be morefeelings of

1ents withm i t t i n gthe

~ h i s or her1 person orfhe publicparents 0 r

Thalassaemia: Social Stigmatizal i n o f Patients ana J ~ . l u c

thalassemic children residing in Pakistan know very little atout the disease (Arif:

2008).

Knowledge and understanding about thalassemia and car· er screening can beimproved if education to public about the disease is being r::•ovided 2. The publicawareness may be improved by cerebrating thalassemia days, introducing thetopic in school syllabus, using pamphlet, posters and mass -.edia, involvement ofhealth personnel including lady health workers and vac•:inators and lectures

presented to the general public as well as before screen n ~the p e r s o n s . ~ B e i n gacarrier in Pakistan may render an individual unfit as a sui tcble marriage partner.The stigma associated with being a carrier can only be: reduced significantlythrough greater awareness and public education. Reducti - l of stigma will takeyears and years of public education (Petrou, 20 l 0) ,

n thalassemia, lack of access, low awareness, low-risk ~ ~ r c e p t i o nand povertyare all important proximate constraints; however, one of the greatest barriers tothe program is rootea in cultural notions of blood, m a r r i a ~ ; eidentity, personhoodand kinship in Bengali society. Blood is so deeply valuec in the Bengali kinshipsystem that this genetic mutation is perceived to be corrupting the blood(Sreepama, 2006).

Some countries including Iran, Saudi Arabia, Palestinian ferritor ies and Cyprushave laws in place making premarital screening f cx hemoglobinopathiesmandatory for all couples before they are given approva to get married. In allthese countries, mandatory screening is practiced in a c, >


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inappropriately treated or not treated at all. Parents, sibling_s and n: ::dical ~ t ~ f fincluding doctors, nurses and psychologists, all play a cructal role L- provtdtngsupport to teenage patients with thalassaemia to feel confident and IEPPY and tocomply to treatment, reminding them of the dangers of not carryt:-g out thetrdoctor's recommendations. Some doctors use examples of happy, ltealthy andsuccessful older patients who comply with treatment, in an effort ;o encourageand support teenage patients (Androulla, 2007).

Literature Review:

According to Sreeparna Chattopadhyay, HIV/AIDS, tuberculosi::. or leprosy,where the complexities of social stigma introduce the p::ssibility ofunderutilization of awareness programs increases. A combination Jf culturallysituated understandings of blood, kinship, marriage and p e r ~ o n h o o dandproximate barriers such as restricted access, low-risk perception aid awareness,and financial constraints pose major obstacles to the prevention pro ~ a m Thougha formidable task, thalassemia prev-ention is not entirely imposs t-J e; with thecorrect mix of strategies, support of local communities and dete lnination it ispossible to reduce the incidence of thalassemia major and concurre11t mental andphysical suffering (Sreeparna; 2006).

According to Samavat, in Iran coverage of couples under the NationalThalassemia Prevention Program by 2000 had lowered the birth o -children withThalassemia by 30% of the expected rate since the inception of u e program in1997. The key to the success of the program lay in its holistic ap r: roach, whichwas preceded by widespread public education and public health su rveillance. Theservices of the program were sensitive to Islamic norms relating ' o abortion andeven co-opted Islamic scholars, making an argument for medic tlly necessarytermination of pregnancies (Samavat; 2004 ).

According toN. Ghotbi in a large 3-year study of 100 000 cases :o Isfahan, afteridentification and genetic counselling of carriers, found an ave ·1ge of 90% ofhigh-risk couples decided not to marry and no new cases of t l m ~ s s a e m i aweredetected in the children of the screened population. It was concil.ded that whenboth members of the couple were trait-positive their preferred cl-oice was not tomarry, rather than to marry and use other or no methods to preve11t the birth ofathalassaemic child. Cultural and religious ideas seemed to have a role in the:.edecisions and the establishment and use of a genetic counseling centre seemedprevent most new thalassaemia cases by discouraging at-ris ·c couples frommarriage. Moreover, I 0% of at-risk couples in the Isfahan study that insisted ~ mmarrying reported trying to register the marriage in another area •)Utside Isfahan.

26

The lGhotbi,,

_Reginapsychosodiscussed

Confusio1being sti1racial subonly by c<

M Ghaneioffered totcrken in tothalassaerrby prenatalaw. Afte.attendance

efficacy isincreased

N. Ghotbi Iendangerin.being labelasking theprevent the(including cpractically r

Methodolo1

he Presen

The currentto explore tPakistan witof responderthe permissiData collectmonths andthrough simJarticle is pre .


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was not tobirth of a

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seemed wp\es fromnsisted one Isfahan.

Thalassaemia Soc tal Stigmoti:: a ion o/ Patients nd Issues

The study did not follow them nor did it include their offsp : ing in its results. N.

Ghotbi, 2005).

Regina has concluded that stigmatization of canier-s -atus, having maJorpsychosocial implications in heterozygote genetic sc r eening programs, isdiscussed and· related to Erving Goffman's work in the c: t ea of stigmatization.Confusion between the carrier state and the disease state tn cy result in the carrierbeing stigmatized . Public misinformation may even ka c lo entire ethnic and

racial subgroups being stigmatized, a courtesy stigma app ied to those affiliatedonly by common ancestry to the stigmatized individuals R ;g ina, 1978).

M Ghanei et al has found, when carrier diagnosis and tha\01 ;saemia prevention isoffered to a population, cultural, religious, social and ecoromic factors must betaken into account. The present economic situation in Ira n. had made long termthalassaemia treatment impossible but on the other hand th lassaemia preventionby prenatal diagnosis and selective abortion is prohibited b Y custom and rei igiouslaw. After establislling a prevention programme pre .'ersus post-marriageattendance ratios were increased. This is a desirable result as genetic counselingefficacy is higher pre rather the post marriage. This result tTay be associated withincreased population awareness (M Ghanei; 1997).

N. Ghotbi has found prohibiting couples from marriage h a ~a big disadvantage ofendangering the compliance rate and also adds to the siLe of the stigma ofbeing labeled as a canier. It seems that providing th e ge netic counseling andasking the couple to consider the ultimate risk, the necc ry procedures to helpprevent the birth of a thalassemic Child and the inv o ved costs and risks(including death of hea I hy fetuses because of samp Iing pro :eel ure) i s e nough andpractically more efficient in this respect( N. Ghotbi , 2005) .

Methodology:The Present Type of Study:

The cunent type of the study is an exploratory ; the major im of this research isto explore the Perceptions / Social Stigma related to ~ T 1alassaemia Major inPakistan with special reference to ~ Thalassaemic Patient ; in Karachi. Selectionof respondents is conducted from one Thalassaemia Care C n t r ein Karachi . Withthe permission of the administration researcher had de c ioo:d to collect the data .Data collection instrument used was interview schedule. e s e a r c h e rhas spent 3m ~ m t h sand 8 days for data collection including pre-t esti 1g. Sampling is donethrough simple random sampling, through random numbers . Data in the presentarticle is presented in descriptive statistics .

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Schema - 20 1 1

Data Analysis [Descriptive Statistics]:

Tabl 1 P ercentage d b .stn utwn o f respon d d I . I .ents accor mg to t IeL r gcrH e

28

Gender of Patient Percentage

Male 53 .85Female 46 . 15

Total 100I ·

Table 2Pcr·centage distr·ibution of respondents according to the mot ltc 1· tongue

et h . .l l CityMother tongue

PercentageEthnicity

Urdu 19 23

Sindhi 20 .00Punjabi 12 31

Balochi 22 31. . . _ -

Pashto 16 15

Other I 0 .00

--------otal 100Table 3Percentage distribution of respondents accor·ding to other P- f halassacmic

child in the familyOther· P-Thalassaemic

Percentagechild in the family

Yes 40 .77No 59.23Total 100

Table 4Percentage distribution of respondents according to Patient · rictimized by

friend s hootino .

Patient victimized byPercentage

friend hooting

Yes 59 .23

No 40 .77

Total 100

r

Per\

Percent;

Summary

The studythe peerrelationshiavoid parti

Recomme

Recomme1of n l y s

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aemic

zed by

Thalassaemia : Social Stigmati.: Ition o f Patients nd Issues

Table 5Percentage distribution of respondents according tc Family attending

' . h Tl I . h ldarties Wit 1a assaem1c c IFamily at tending parties with

Pe t -centageThalassaemic child

Yes 44.6

No 55.38

Total 100- - · · -- - -

Table 6Percentage distr·ibution of respondents according to c l ild pat ient s mother

being: victim o f bl . bnung y spousE

Victimizatio_ 1, blaming spouse Percentage

Yes 56.15

No 43.85

Total 100

Summary:

The study reveals that social stigmatization is found amoo the patients, both atthe peer levels and also the blame game approach is found in the familyrelationships. This is evident from the findings that major ;ty o f the patients evenavoid parties and gatherings, due to the this very cause of st .gmatization.

Recommendation:

Recommendations are very important part of researcher a :l subject. In the lightof analysis and observation the recommendation are:

• It is very necessary to continue the researc - and discover newdimensions.

• Most of the families not afford the cost of lceatment; the specialmedicines for thalassaemics should be subsidized.

• Avoid the cousin marriages.• NGO s must work-hard to eliminate thalassaemia .

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Schema- 2011

• Government should constitute a Jaw for pre-marital test to identify thethalassaemia carrier and also develop the modern Thalassa mia Centersthroughout the country.

• Government should Introduce Health Policy for Thalassae1:1ic and alsoprovide employment opportunity for them.

• The elders of the town/street must develop the Mohalla Co nmittees tospread the knowledge of Thalassaemia at grass root level.

• The knowledge of Thalassaemia should be included in Sf llabus of alllevels

References

Androulla Eleftheriou (2007) About The Thalassaemia, T halassacmiaInternational Federation

Arif F, Fayyaz J, Hamid A. Awareness among parents of =hildren withThalassemia major. J Pak Med Assoc 2008; 58( II : 621-24

Cooley Anemia Foundation (2009)http://www .thalassemia.org/index. php?option=com _conten t v i e w a r t i c le&id=90

Cousens NE, Gaff CF, Metcalfe SA, et al. Carrier screeni ,-g for Betathalassaemia: a review of international practice. Eur J ~ Genet 20 I0;18 1 0): 1077-83

Khattak MF, Saleem M (1992). Prevalence of heterozygous beta -t 1alassemia innorthern areas of Pakistan Journal of Pakistan Medic d Association;42(2):32-4.

M Ghanei, P Adibi, M Movahedi, M A Khami, R L Ghasemi . T Azarm, 8Zolfaghari, H R Jamshidi and R Sadri; Pre-marriage prevention ofthalassaemia: report of a I 00 000 case experience in l ifa han, PublicHealth (1997) 111, 153-156; The Society of Public Health 1997.

Markel H. (2005) The stigma of disease: implications of genetic sc ·eening, AmMed 1992; 93:209-15.

N. Ghotbi and T. Tsukatani; Evaluation of the national heot th policy ofthalassaemia screening in the Islamic Republic of Iran, EasternMediterranean Health Journal, Vol. I I No.3 2005

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Petr1

Reginas

Shahid tvB

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SreeparnachM

Samavat20


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Beta2 l ;

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Thalassaemia. Social Sligmaliza .on of alienls and Issues

Petrou M. Screening for beta thalassaemia . Indian Pediatr 2 0; 16 I): I -5

Regina H. Kenen, and Robert M . Schmidt; Stigmatizatic 1 of Carrier Status:Social Implications of Heterozygote Genetic Scree1 ng Programs, AJPHNovember 1978, Vol. 68, No. II, P 1116-1120

Shahid Mahmood Baig, Ayesha Azhar, Hammad Hassan, Jamshaid MahmoodBaig, Muhammad Aslam, Mohammad Amin Uc Din, Javea AnverQureshi, Tariq Zaman,( 2006). Prenatal diagnosis: of ~ t h a l a s s e m i ainSouthern Punjab, Pakistan. Prenatal Diagnosis, Joh 1 Wiley Sons, LtdVolume 26, Issue 10, pp 903-905,

Sreeparna Chattopadhyay ; 'Rakter Dosh'(2006) -Con1pt ing Blood: Thechallenges of preventing thalassemia in Bengal, ln c ia , Social Science &Medicine 63 2661-2673

Samavat A. Modell B. Iranian National Thalassemia Scre ening Program.Bl'v J2004; 329; 1134-7

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Published ByDepartment of Special Education University ofKl rachiShaikh Zayed Islamic Centre University Road K JrachiE-mail: dr _ [email protected]

Akif - Published Article

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