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Indian Journal of Community Medicine

A Comparative Study on Perrceptions and Practices Among Parents of Thalassemic Children Attending Two Different Institutions

Author(s): Bhaswati Bandyopadhyay, Saswati Nandi, Kaninika Mitra, Pankaj Kumar Mandal, Sujishnu Mukhopadhyay, Akhil Bandhu Biswas

Vol. 28, No. 3 (2003-07 - 2003-09)

Deptt, of Community Medicine, R.G. Kar Medical College, Kolkata


Research question: Is there any difference in the level of perceptions and practices among parents of thalassemic children attending govt. and non-govt. institutions?

Objectives: (1) To assess the financial burden imposed by thalassemic patients on their families, (2) To compare the level of awareness among the parents of thalassemic children regarding causation of the disease. (3) To compare the measures adopted by these parents to prevent birth of an affected child in future. (4) To compare the requirement and procurement practices of blood by these parents for their affected children.

Study design: Cross-sectional,

Setting: Pediatric ward of R.G. Kar Medical College and Hospital (RGKMCH), Kolkata and the Thalassemia Society of India (TSI), Kolkata.

Participants: All accompanying parents of thalassemic children admitted in the pediatric ward of RGKMCH and of those attending TSI during the study period.

Statistical analysis: Chi square test, t test.

Results: Compared to the thalassemic children attending govt, hospital, those attending the NGO were of higher age group, were under treatment for longer duration and required blood transfusions more frequently; most of their parents were literate (96% mothers attending TSI Vs. 47.1 % mothers attending RGKMCH), more aware about the hereditary nature of the disease (90% Vs. 64.5%), donated blood more frequently (76% Vs. 50%p), spent more for the treatment of their children (2/3rd Vs. 115th) and underwent screening tests for carrier state detection in more numbers (78.6% Vs. 45.7%). Adoption of birth control measures by the parents in both the groups, however, showed no significant difference.

Key Words: Awareness, Thalassemic children, Practices


BETA-thalassemic is the most common single gene disorder in our country1. In fact beta-thalassemic has emerged as a huge public health problem worldwide2. Increase in survival of patients with this disorder has led to more prevalence of this disease. It has been estimated that more than thirty million people carry the defective gene1 and over nine thousand thalassemic children are born yearly in India. Prevalence of beta-thalassemic trait in India is 3% in general population4 but among certain communities and religions like Punjabis, Sindhis, Bengalis, Jams and Muslims, the incidence of beta-thalassemic trait ranges between 8-15%5, There being no positive cure for thalassemic, the case management depends solely on palliative repeated blood transfusions; thus imposing a huge burden on the health system and on the financial status of the affected families. The mental agony of the affected family cannot be quantified and cannot actually be perceived by those who do not experience the trauma themselves.

The most effective approach to reduce the burden on the society and reduce the disease incidence is through implementation of a carrier-screening programme, offering genetic counselling, prenatal diagnosis and selective termination of affected fetus1.

Preventive measures have already been adopted successfully worldwide especially in Cyprus and Sardinia where the disease has almost been prevented6. In the prevention of beta-thalassemic, social scientists and counsellors have a major role to play4. The govt. teaching hospitals, in spite of being tertiary level referral hospitals in States have to serve people from all socio-economic strata and have to cater to all sorts of ailments ranging from the simplest infections to highly complicated chronic-illnesses. Thus they are often over-crowded and the staff are over-burdened to offer repeated counselling and sustained motivation to parents of children suffering from genetic disorders.

On the other hand there are specialized non-govt. organizations (NGOs) that manage these disorders specifically and, therefore, can devote more effort on the very important preventive counselling aspect of these disorders apart from therapeutic interventions. It can, therefore, be assumed that the parents of thalassemic patients attending the two different facilities may differ in their perceptions and practices in adopting various preventive measures. With this assumption in mind the present study was undertaken at two different institutions to find out if such differences are factual or hypothetical.

Material and Methods:

Study period: Jan. to March 2001.

A total of seventy parents (either father or mother) accompanying the thalassemia patients admitted in the pediatric ward of RGKMCH during the month of Feb. 2001 were interviewed. Readmissions during the same month were excluded from the study. Thalassemia society caters to 10-12 children per day, six days a week. The minimum interval between two consecutive blood transfusions for a child was reported to be 15 days. To avoid inclusion of the readmissions, the thalassemia society was visited on alternate days for 15 days. A total of seventy-five parents (either father or mother) accompanying the child attending the thalassemia society were interviewed.


The total number of admissions in the pediatric wards (RGKMCH) in Feb. 2001 was 346. The total number of thalassemia patients admitted in the same period were 78(22.5%) including 8 re-admissions. The total blood requisition from the pediatric wards during the same period was 223 units out of which 157 units (70.4%) were for thalassemia patients:

Table I: Age and sex distribution of thalassemic patients,

Sex Male 41 (58.6) 54 (72)
Female 29 (41.4) 21 (28)
Age (Yrs.) 0-4* 26 (37.1) 6 (8)
5-9 33 (47.1) 30 (40)
10-14* 10 (14.3) 21 (28)
>15 1 (1.5) 18 (24)

In both govt. as well as NGO sector most of the thalassemic patients were male, being 58.6% and 72% respectively. 84.2% of the patients attending govt. hospitals were below 10 years of age as compared to only 48% attending the Thalassemia Society in the same age group. The difference was found to be statistically significant (p<0.05).

Table II: Familial characteristics of affected children

p value
Literacy status: Mother (Literate) 33 (47.1) 72 (96) <0.05
Father (Literate) 49 (70) 72 (96)
No. of affected children in family: l 50 (71.4) 59 (78.6) <0.05
>2 20 (28.6) 16 (21.4)
Average % of monthly income spent on treatment 23.8±19.5 60.2±22.5 >0.05
Carrier screening test undertaken by parents: Yes 32 (45.7) 59 (78.6) <0.05
No 38 (54.3) 16 (21.4)
Family planning measures adopted: Terminal 16 (22.9) 5 (6.7) >0.05
Spacing 27 (38.6) 46 (61.3)
Nil 19 (27.1) 21 (28)

Literacy status of the mothers (47.1 %) and fathers (70%) of the affected children attending the govt. hospital were significantly lower (p<0.05) as compared to 96% for both mothers and fathers of the affected children attending the Thalassemia Society. 71,4% of the families attending govt, hospital had only one affected child as compared to 78.6% of the families attending the thalassemia society. More than one-fourth (28,6%) of the families attending govt, hospital had two or more affected children as compared to about one-fifth (21.4%) of the families attending the NGO. The average percentage of monthly family income spent for the treatment of the affected child in a govt. hospital (23.8%) was found to be lower as compared to 60.2 in the Thalassemia Society. 78.6% of the parents attending the Thalassemia Society underwent screening tests for carrier state detection, whereas, only 45.7% of the parents attending govt. facility underwent similar tests and difference was found to be statistically significant (p<0.05). More or less the same proportion of parents of thalassemia patients attending govt. hospital (27.1%) and Thalassemia Society (28%) had not adopted any family planning measures. Spacing methods were more common among parents in the Thalassemia Society (61.3%) as compared to 38.6% in the govt. hospital.

Table III: Blood requirement and procurement practices

p value
Frequency of blood requirement < 1 month 5 (7.2) 50 (66.7) <0.05
> 1 month 65 (92.8) 25 (33.3)
Source of blood Only Govt, blood bank 68 (97.1) 6 (8)
Both Govt. and Pvt. blood bank 2 (2.9) 69 (92)
Parents/relatives ever donated blood 35 (50) 57 (76) <0.05
Average duration of treatment of that, pts, (yrs) 4.65±3.44 9.98±5.84 <0.05

66.7% of the patients attending the Thalassemia Society needed blood transfusions more than once per month as compared to only 7.2% in govt. hospital and the difference was statistically significant (p<0.05). Of the patients attending govt. hospital, 97.1 % procured blood exclusively from govt. blood banks, whereas, 92% parents attending the Thalassemia Society availed both Govt. and Pvt, blood bank facilities, Significantly (p<0,05) higher proportion of parents (76%) attending the Thalassemia Society had donated blood for their children as compared to 50% of the parents/relatives attending govt, hospital. The major reasons for not donating blood were "no such need arose (45%), physically weak parents (30%), unmatched blood group (10%) and do not know (5%). Average duration of treatment of the thalassemia patients included in the study was found to be significantly higher (p<0.05) in the Thalassemia Society (9.98 years) as compared to 4.65 years in the Govt. hospital.


In both the institutions, proportion of male patients was higher. Relatively higher proportion of male patients (72%) at TSI was also corroborated from the records at TSI, which showed that out of 208 registered patients 141(68%) were males. This may be explained by the deep-rooted gender bias among the parents of these chronically ill children who seek medical care and are ready to spend more for their male children only. In the present study, the short study period of one month may have exaggerated the sex distribution. The finding of male preponderance was observed in other studies as well; Harsha et al4 and Sur et al7 reported 56% and 62.1% of male patients, respectively.

Proportion of the affected children in the age group ≥10 years was found to be more in the Thalassemia Society as compared to govt. hospital. The possible reasons may be that, (i) the study was conducted in the pediatric ward of a govt. institution, (ii) availability of iron chelation therapy at the Thalassemia Society may be a reason for increased longevity and (iii) parents gradually come to know about the better treatment facilities provided by the NGO at a later stage.

Significant difference of literacy status was found among the mothers attending the two facilities. Almost all the mothers attending the thalassemia Society were literate in comparison to only 47.1 % mothers attending Govt. hospital (Table II); possible reason being that literate parents are more aware of the better treatment facilities available at the Thalassemia Society and at the same time they are usually better-off financially to spend more for treatment at the NGO.

The number of affected children per family among those attending govt. institution and the Thalassemia Society were more or less the same. 20% to 30% of families had more than one affected child. These births could have been prevented with more awareness and effective preventive measures.

Proportion of monthly income spent for treatment purpose was found to be much higher among the parents attending the Thalassemia Society possibly because of costly iron chelating agents, expensive investigations and consultation fees. The better awareness about the disease among the parents attending the Thalassemia Society was reflected by a significantly larger number of them (78.6%) undertaking carrier state detection test compared to those attending govt. hospital (45.7%). There was no significant difference between the two groups of parents regarding adoption of family planning measures. The knowledge that thalassemia is a hereditary disease was known to almost all those parents (90%) attending the Thalassemia Society as compared to their counterparts (64.5%) attending the govt. hospital. Similarly, a higher proportion of parents (95%) attending the Thalassemia Society knew that there was risk of subsequent sibling affection by the same malady as compared to only 76.8% of their counterparts attending the govt. hospital. This might be due to the increased literacy status of the parents attending the NGO as well as genetic counselling done in the Thalassemia Society. Harsha4 also observed that among high-risk communities, post-counselling follow-up revealed 100% of persons with thalassemia trait were aware about the hereditary nature of the disease.

Higher frequency of blood requirement for the affected children was observed in Thalassemia Society as compared to those attending the govt. institution. This might be due to the fact that parents attending the Thalassemia Society were literate and also made aware and more alert about the symptoms and sings of their children as well as importance of their regular follow up including Hb estimation by ongoing regular counselling services. In contrast, in govt. hospital, most of the mothers being illiterate were not aware of the value of regular follow-up and they attended the facility only when severe signs and symptoms developed. Due to the same reasons higher proportion of parents (76%) attending the Thalassemia Society had donated blood for their affected children compared to those in govt, hospital (50%). Average duration of treatment of thalassemia patients was higher in the Thalassemia Society (9.98±5.84 years) as compared to only 4.65±3.44 years in govt, hospital, which might be attributed to higher proportion of > 10 years of affected children attending the former compared to the latter.

Conclusion & Recommendations:

The observations call for immediate intervention measures, which may be follows:

1. Organizing regular awareness programmes & genetic counselling among high risk communities to inform them the salient facts about thalassemia, its hereditary nature, treatment & preventive possibilities & at the same time trying to remove the social stigma which often refrain people from undergoing screening tests. Involvement of mass media is needed to achieve this goal.

2. Medical social workers in govt. facilities may be involved seriously to maintain close liaison with families to motivate them to adopt measures to prevent birth of another thalassemic child. In this effort close co-operation & co-ordination between the Thalassemia Society & govt. hospitals may be helpful.


We are thankful to the Principal, all the faculty members & other staff of Deptts. of Community Medicine & Pediatric Medicine, R.G. Kar Medical College & Hospital, Kolkata, India, for their whole hearted support in completing this study. We are also thankful to the Thalassemia Society of India, 118-Raja Rammohan Roy Sarani, Kolkata, India for their kind co-operation. Our sincerest gratitude also extends to those thalassemic children & their parents without whose co-operation this study would not have materialised.


  1. Maheswari Manjula, Arora Sadhna et al. Carrier screening & prenatal diagnosis of Beta-Thalassemia. Indian Paediatrics, Nov 1999; 36(11): 1119-25.
  2. Weatherall DJ, Clegg JB, Thalassemia is a global public health problem. NatMed 1996; 2: 847-9.
  3. Choudhry VP, Kotwel J, Saxena R. Thalassemia screening and control programme. Paediatrics Today 1998;1: 283-6.
  4. Yagnik Harsha. Post counselling follow-up of Thalassemia in highrisk communities. Indian Paediatrics, Dec. 1997; 34(12); 1115-8.
  5. Marwah RK, Lal A. Present status of hemoglobinopathies in India. Indian Paediatrics 1994; 31: 267-71.
  6. Cao A. Rosaw R, Gaialio G, Munni G, Olla G, Cossu P, Ristaldi MS. The prevention of Thalassaemia in Sardinia. Clin Genete 1989; 36: 227-85.
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