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©Advance Educational Institute & Research Centre                                                 Annals of Psychophysiology 

www.aeirc-edu.com                                                                                                       Volume 2, December 2015 

 

ISSN 2412-3188 
 

Original Article 

Depression, Anxiety and Stress among Primary Caregivers of Thalassemia Patients in Hyderabad 

Aatir H. Rajput1, Faris Nadeem2 & Vikram Kumar2. 

1-LUMHS Research Forum 

2-Liaquat University of Medical & Health Sciences, Jamshoro 

aatirh.rajput@gmail.com 

Abstract 

A chronic genetic disorder; Thalassemia major is a disease, characterized by continuing and severe anemia, bone 

deformities, hepato-splenomegally and growth retardation. It is a potentially life threatening and serious life-limiting 

disease that brings about considerable disturbance in all aspects of life. Therapies such as transfusion of blood have 

enhanced the physical health status of the thalassemia major patients but numerous treatment sessions and alteration 

in physical appearance effects on the quality of life of the patients and their families. Depression while battling 

surviving thalassemia is increasingly accepted, globally. But we hypothesized that psychiatric morbidities aren’t 

limited to the patient, in fact they extend to the caregivers as well. Our study screens the primary caregivers for 

Depression, Anxiety and Stress which more often than not are the parents.  This observational study encompassed all 

3 major thalassemia centers in Hyderabad namely; Fatimid foundation, Zainabia center and Saharo human aid center. 

The city-wide survey included 79 caregivers presenting at these centers (via convenience sampling) from 1st Dec 

2014 to 10th February 2015. Data was collected using interview based structured questionnaire which included the 42 

point DAS scale approved by Australian Center for Posttraumatic Mental Health. The data was analyzed in SPSS v. 

19.0 and Ms. Excel 2013. Moderate levels of Depression (16.06), Anxiety (10.44) and Stress (19.11) were all 

unearthed in the caregivers. Majority of the sample comprised of male (60.8%), educated respondents (78.5%) living 

in joint families (57%). The caregivers mainly belonged to lower (35.4%) and middle (54.5%) economic class and 

were forced to miss an average of 2-3 days of work per week. The unending therapeutic process of thalassemia, its 

cost and impending health problems have adverse effects not only on the patients but on the caregivers as well who 

spend their time struggling and praying for the patients’ health. The mental health of the caregivers should be taken 

into account and psychiatric consultations should be provided to the caregivers so they may be better able to tend to 

the patients. 

Keywords 

ß-Thalassemia, Depression, Anxiety, Stress, Primary caregivers, Blood Transfusion, Chromic Illness. 

 

Introduction 

ß-Thalassemia major, an ailment largely associated 

with excessive breakage of red blood cells and mal-

production of hemoglobin. Hemoglobin (Hb) is 

comprised 4 protein subunits, 2 alpha and 2 beta units. 

Mutations in the gene coding for the protein ß 

subunits, leads to a lessened or totally missing ability 

to synthesize the globin ß-chains, leading to absence 

of the synthesis of ß hemoglobin or, in less severe 

cases, to abnormal hemoglobin This error leads to 

anemia often stemming from the abnormal synthesis 

of red blood cells, which is the hallmark of 

thalassemia. Mediterranean region is plagued with a 

high prevalence of thalassemia; the highest incidence 

is reported in Italy, the Greek islands and in Asia, 

where the peak prevalence of the genetic mutations 

underlying thalassemia is reported in the Maldives 

(Pignatti BC, 2004). The conventional treatment 

comprises of repeated transfusions of blood that may 

lead to overload of iron in the tissues. Younglings on 

hyper-transfusion regimens will continue to grow 

normally probably till puberty. An estimate of the 

body iron is derived from serum ferritin; levels 

exceeding 2500 mg/l for over 15 year are thought as a 

factor increasing the risk for cardiac disease (Pignatti 

BC, 2004). The concept of health, as explained by 

WHO, “a state of complete physical, mental, and 

social well-being, not merely the absence of disease” 

states clearly importance of mental health. Similar to 

other long term illnesses, beta-thalassemia burdens not 

only the individual patient but the entire family which 

includes (but is not limited to) social and 

psychological consequences which ultimately affects 

the wellbeing of the patient (Porter J, 2002). So it is 

imperative to study the psychological factors which 

incorporate, add to distress of the family alongside 

other factors. Previous studies focused on these points 

have shown improvement in the quality of life of such 

patients and their ability to integrate well into their 

society (Porter J, 2002)..  Parents of children suffering 

from thalassemia not only worry regarding their 

children’s standard of life, goals and their expectations 

but, also the influence of the constant realization of 

disease, repeated treatment visits to the morbid 

environment of the hospital on family dynamics and 

the family’s financial, psychological and social 

stability. Major concerns of the parents regarding the 

disease are related to the physical outlook of their 

child, short stature, bone deformities, poor self-image, 

and hampered fertility, absent or delayed absent sexual 

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Aatir H. Rajput 9 

  

©Advance Educational Institute & Research Centre                                                 Annals of Psychophysiology 

www.aeirc-edu.com                                                                                                       Volume 2, December 2015 

 

ISSN 2412-3188 
 

development and other such complications; infections, 

diabetes, bone and heart disease (Mazzone L, 2009). If 

viewed from the patient’s perspective, it is a worrying 

and scary experience where they have no choice but to 

face the mentally tiresome psychosocial aspects of 

thalassemia. In addition to that, their regular visits to 

the thalassemia centers for blood transfusions and 

blood tests with iron chelation therapy too are 

mentally and physically exhaustive. Parents of patients 

suffering from β-thalassemia have to battle a 

significant psychological influence, leading to 

hopelessness, emotional burden and difficulty with 

social accommodation. They often experience adverse 

thoughts about their life, heightened anxiety, guilt and 

lessened self-esteem. If the ability to cope up with 

painful situations abandons them, they are prey to 

severe psychosocial problems. On one or more 

account, souring of relationship amongst family 

members, heightened isolation and marginalization 

too are persistent problems faced by many. Our study 

aims to focus mental health in particular and studies 

the parents of thalassemic patients. This will help us 

gain insight into the pain and the impaired domains of 

life (physical health, psychological health and quality 

of life). Our study screens the caregivers for 

Depression, Anxiety and Stress.   

Methodology 

This observational, cross-sectional study 

encompassed all 3 major thalassemia centers in 

Hyderabad namely; Fatimid foundation, Zainabia 

center and Saharo human aid center. The city-wide 

survey included 79 caregivers presenting at these 

centers (via convenience sampling) from 1st Dec 2014 

to 10th February 2015. Data was collected using 

interview based structured questionnaires which 

included the 42 point DAS scale approved by 

Australian Center for Posttraumatic Mental Health. 

After obtaining verbal informed consent, respondents 

were requested to fill the proforma’s at the clinic. The 

data was analyzed in SPSS v. 19.0 and Ms Excel 2013.  

Results 

The sample population belonged mainly to different 

localities of Hyderabad representing different gender, 

ethnic, socio-economic, educational and age groups. A 

few of these demographics along with the family 

structure of the respondents is depicted in the Figure 

1. 

Figure 1: Majority of the caregivers visiting the 

thalassemia clinic were males (60.8%) owing to our 

conservative societal values and traditions. Another 

aspect that can be attributed to our societal trends and 

traditions is the family structure. 57% of the 

respondents were a part of joint family set-up while 

only 43% belonged to nuclear family set-up. However, 

a finding defying perceived societal statistical norms  

 

is the educational status of the respondents. A vast 

majority (78.5%) of the respondents were educated 

while only a meagre 21.5% were uneducated. 

Care givers of thalassemic patients poured in at the 

transfusion centres from varied self-defined age group. 

The decade long groups started from 21 ears and went 

above 51 years. Figure 2 below further explains the 

age dynamics in detail. 

 

Figure 2: The greatest proportion (42.5%) of the 

respondents fell within the age group from 31 to 40 

years. The second most common age group, attracting 

30.4% of the sample, was 21 to 30 years. The 

remaining two age groups 41 to 50 years and 51 and 

above years each contained 22.8% and 5.2% of the 

sample respectively. The age classification serves as a 

testimony to the primary assumption that primary care 

givers are parents since the respondent and early 

parental age coincide strongly. 

Depression, Anxiety and Stress were all unearthed in 

the caregivers. The values are a mean of the values of 

60.80%

39.20%

21.50%

78.50%

57%

43%

0.00%
10.00%
20.00%
30.00%
40.00%
50.00%
60.00%
70.00%
80.00%
90.00%

30.40%

42.50%

22.80%

5.20%

21 - 30

31 - 40

41 - 50

51 and above

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Aatir H. Rajput 10 

  

©Advance Educational Institute & Research Centre                                                 Annals of Psychophysiology 

www.aeirc-edu.com                                                                                                       Volume 2, December 2015 

 

ISSN 2412-3188 
 

all respondents. Further detail can be derived from 

Figure 3. 

Figure 3: The height of the bars indicate individual 

levels only and no comparison can be drawn with each 

other since the standard scales and values differ for 

each. Depression level falls within the moderate range 

(14-20). Anxiety falls within the moderate range (10-

14) and Stress too falls within the moderate range (19-

25) defined by the DASS scoring manual.  

The origins of depression, anxiety and stress aren’t 

always psychological and emotional in origin. We 

believe that in our modern society, depression, anxiety 

and stress are often materialistic and financial in 

origin. The Figure 4 below sheds light on the 

economic class of the patients and their primary 

caregivers presenting at the thalassemia centers. 

 

Figure 4: Majority of the respondents belonged to the 

middle socioeconomic class (54.5%), shortly followed 

by the lower socioeconomic class (35.4%). Only a 

small minority of the respondents belonged to the 

higher socioeconomic class (10.1%). The 

socioeconomic distribution of synonymous with the 

national demographics of 2013. 

As a consequence of the disease, debility is seen in not 

only the patients but indirectly in the caregiver as well. 

Many of whom were forced to miss their work. Figure 

5 describes the phenomenon further below.  

Discussion 

Individuals (children especially) suffering from 

thalessemia are battling a severe chronic hemolytic 

anemia that requires transfusions as the sole mode of 

survival. The long-term illness not only induces 

psychological distress among the children but their 

families as well. This often leads to numerous adverse 

types of behavioral patterns and emotional responses 

in the family, which influences the relationships of 

family members with each other and with their 

surroundings. Lon-term diseases of childhood affect 

the daily life and routine of the patients parents the 

most and that too at several levels (cognitive levels, 

emotional level) (Monastero R, 2000). 

 
Figure 5: On average, the respondents missed 2 – 3 

days of work per week owing to their responsibility of 

caring for the patient. On extremes, 15% of the 

respondents needed miss only 1 work day while 4% of 

them missed the entire week of work. 

The battle with beta thalessemia is an unending 

sojourn and leads to heightened psychological burden 

to the patients and their families. On numerous 

accounts. Rao P, Pradhan PV has claimed that the 

incidence of psychopathological disorders is higher in 

parents of children with disabling and chronic illnesses 

(thalassemia) as compared to the normal population 

(Economou M, 2006). It is claimed by Deepika 

Shaligram that 57% of the caregivers were troubled 

with psychological distress and had a lessened Quality 

of Life in as much as 50% of the studied population. 

Existing literature also claims that caregivers of 

thalassemia patients are faced with higher incidence of 

developing psychological distress as compared to 

healthy children (Zafeiriou DI, 2006). This rate of 

1 day
15%

2 days
36%

3 days
34%

4 days
6%

5 days
5%

6 days
4%

1 day 2 days 3 days

4 days 5 days 6 days

16.06

10.44

19.11

0

5

10

15

20

25

Depression Anxiety Stress

D A S   - score

35.40%

54.50%

10.10%

Lower economic class Middle economic class

Higher economic class

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Aatir H. Rajput 11 

  

©Advance Educational Institute & Research Centre                                                 Annals of Psychophysiology 

www.aeirc-edu.com                                                                                                       Volume 2, December 2015 

 

ISSN 2412-3188 
 

psychological distress leading to parental stress is 

higher due to the multiple problems which parents 

have to tackle while their children undergo the 

difficult and painful treatment procedures of 

thalassemia. Parents are troubled with issues such as 

the difficulty of psychosocial adjustment of the child, 

financial woes, treatment provision, travelling and 

other social problems. Existence of long-lasting 

diseases in children especially those that do not have 

complete cures is a situation which causes stress for 

mothers and can rile them with against life situations 

and make them more prone to suffer from depressive 

disorders (Sharghi A, 2006). 

 

Medical centers tending to chronically/seriously ill 

children, should additionally provide psychiatric 

consultation in an attempt to monitor and control 

depressive disorders plaguing mothers. This can 

hopefully aid mothers get through the child’s disease 

in a healthier manner and allow them care for their ill 

child, and their family, effectively and efficiently. 

 

Low educational status in caregivers may lead to lesser 

realization of the nature of illness and consequently 

greater propensity of tumbling into psychological 

distress. It is likely that the traits of harsher diseases 

(younger age of onset, frequent transfusions and 

behavioral problems in the young patient) prompted 

more apprehensions and psychiatric morbidity in the 

caregiver. Also, the buffering effect of the nuclear 

family setup against psychiatric troubles may be 

because of the protection from societal troubles in 

ways that are not available to the joint/extended family 

systems. (Shaligram D, 2007) 

Conclusion 

Briefly, this study concludes that the caregivers’ 

concerns pertaining to thalessemia and their own 

psychiatric problems are worryingly high. The study 

helped bring to light multiple aspects of psychological 

distress which might facilitate in designing 

intervention strategies. The psychological troubles of 

the caregiver influence many facets of the lives of the 

caregiver including work. Thus support for the 

caregiver in the form of mental health intervention, 

self-help groups and education and medicine should be 

an essential part of managing thalassemia in order to 

improve outcomes. Further research in this area with a 

control group, vaster sample size and repeated 

evaluations would offer better understanding of the 

problems that the caregivers are faced with and 

strengthen the case for an cohesive management 

approach. 

Conflict of Interest 

All the authors disclosed that there is no Conflict of 

interest associated in the preparation of this article. 

Acknowledgment 

We would like to acknowledge the intellectual 

assistance and technical support provided by LUMHS 

Research Forum. 

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