Assessing The Level of Stress Among Parents of Children Suffering from Thalassemia in a Thalassemia Day Care Center at Kolkata

Thalassemia comprises a diverse set of blood disorders that impact the haemoglobin genes, leading to ineffective erythropoiesis. Reduced haemoglobin production causes early onset anemia, necessitating regular blood transfusions to maintain haemoglobin levels. This effort focuses on assessing and treating thalassemia, emphasizing this condition.

Alpha thalassemia mainly occurred by the deletion of alpha-globin genes, leading to a decreased or absence of functional alpha-globin chains. It is characterized by four alleles related to the alpha-globin gene, with symptom severity varying in different caused based on the gene number deletions. Severe thalassemia occurs when all four alleles are deleted, preventing the production of functional alpha-globins and resulting in the formation of tetramers from large number of gamma chains present on the time of fetal development.

Beta thalassemia mainly formed due to transformation in the beta- globin gene. It's divided into three orders based on the zygosity of the beta- gene transformation. A heterozygous mutation (beta- plus thalassemia) results in minor beta- thalassemia in which beta chains are not properly produced. It's mild and generally asymptomatic. Major Beta thalassemia is resulting from a homozygous mutation (beta- zero thalassemia) of the beta- globin gene, performing in the nonexistence of beta chains. It manifests clinically as hostility, growth deceleration, hepatosplenomegaly, endocrine abnormalities, and severe anemia taking life-long blood transfusions. The condition in between these two types is called beta- thalassemia intermedia with mild to moderate clinical symptoms. The inherited diseases of hemoglobin include the thalassemia and structural variants of hemoglobin. These are the commonest single gene diseases encyclopedically with an autosomal sheepish heritage and it's estimated that around 300,000 to 400,000 babies with a severe hemoglobin complaint are born each time [1]. All over world 56,000 generalizations would have a major thalassemia complaint and among them around 30,000 would have b thalassemia major, the maturity of babies being born in middle- and low-income countries [2]. Present scenario of India, every year 10,000 children are being born with thalassemia which roughly accounts for 10 of the total world prevalence of thalassemia- affected children and one in eight of thalassemia carriers live in India [3]. The frequency of thalassemia ranges between 0.6 and 15 across south India. Behavioral problems in children with thalassemia major [9]: The hereditary nature of this disease, changes in appearance, and need for continuous treatment, impose unfavorable psychological impacts on patients and their families [4]. Now a days increasing complexity of our life style, the level of stress has been increasing at a phenomenal rate. The diagnosis of   thalassemia   in a child is traumatic for every parent [5]. Parents   have to deal not only with their child’s illness but also stand with the prolonged therapy schedule which could be distressing as the disease itself. Thalassemia has bought psychological burden on the patient as well as their family members [6].

Problem statement:

“A descriptive study to assess the level of stress among the parents of children suffering from thalassemia in a Thalassemia Day Care Centre at Kolkata, West Bengal”.

Rationality of research:

a) To assess the level of stress among the parents of children suffering   from thalassemia.

2. To identify the stressors among the parents of children suffering from thalassemia in a Thalassemia Day Care Centre.
3. To determine the association between the level of stress with selected demographic variables.

REVIEW OF LITERATURE:

Sharghi A. et al. (2006) conducted a study to find out the result for mothers in depression of children with thalassemia or blood malignancy. They conducted a cross - sectional study. The first group consists of 98 mothers having thalassemic child, second group consists of 97 mothers having child who have blood malignancies and another group consists of 99 mothers as control group. They assessed using Beck Depression Inventory. This study shows that there was sadness, disappointment, hopelessness, abatement among the mothers of thalassemia children or blood malignancies than the control group [7].

Shaligram D et al. (2007), conducted a   study “to assess  the  psychological  problems  and Q.O.L in  children  with  thalassemia ”. 39 children (8 - 16 years) with transfusion dependent   thalassemia day care services for blood transfusion were assessed for psychological problems using the Childhood Psychopathology Measurement Schedule and Q.O.L was assessed using   EQ – 50. The results shows 44% of the children had psychological problems and 74% had a poor Q.O.L. Anxiety related symptoms (67%), emotional problems, particularly depression (62%) and conduct problems (49%) were the main findings [8].

MATERIALS AND METHODS:

A quantitative descriptive approach was selected to assess the level of stress. Descriptive research design was chosen for this study to assess the level of stress. Population consisted of all the parents of children suffering from thalassemia in a Thalassemia Day Care Centre at Kolkata, West Bengal. Sample consists of 60 parents of children suffering from thalassemia who were attending the Thalassemia Day Care Centre. Non – probability Purposive sampling was found to be appropriate for the present study. The study was conducted in a Thalassemia Day Care Centre at Kolkata (West Bengal).

Tool and techniques:

Data collection was done using a modified 3 - point Rating Scale which consisted of:         

 Part I: Demographic data which includes father’s age, mother’s age, child’s age, developmental age, sex of child, birth order of child, religion, type of family, area of residence, father’s educational level, mother’s educational level, father’s occupation, mother’s occupation and monthly income of family.

Part II: The 3 - point Rating Scale consisted of physical, psychological, economical, socio-cultural and spiritual aspects. The tool was validated by six experts from various group of medical and nursing. Pilot study was conducted from 09.05.2011 to 14.05.2011 for a period of six days on 18 parents in the Indian Red Cross Society at Kolkata (West Bengal). The reliability of the tool was tested by using inter – rater Karl Pearson’s co - efficient and was found to be 0.914.

RESULTS AND DISCUSSION:

Section -I:

Demographic  data : Out of 60 samples, majority father’s age were  between  31 - 40 years i.e.; 26 (43.33%), majority mother’s age were between  25 - 34 years i.e., 33 (55%), majority  children with thalassemia  i.e., 22(36.67%) were school going, majority of children with thalassemia  i.e., 36 (60%) were male, majority  birth  order of  child  suffering  from  thalassemia  i.e., 34 (56.67%)  is  two, majority  parents  of  thalassemia  children  i.e.;  51(85%) belongs  to  Hindu  religion, majority of  parents  with  thalassemia  children  i.e.; 44(73.33%) are  from  nuclear  family, majority  parents  with  thalassemia  children  i.e.; 38(63.33%) of are  from  rural  area, majority  father  of  thalassemia  child  were  educated up to  higher  secondary  i.e.; 24(40%), majority mother of  thalassemia  child  were educated up to  higher secondary i.e.; 22 (36.67%),majority  father were working in Private  sector i.e.; 25(41.67%), majority  mother were  housewife i.e.;  50(83.34%), majority  monthly  family  income were  Rs. 4001 -7000/-  i.e.; 22 (36.67%), majority  father  have  history  of  thalassemia  minor  i.e.; 55(91.67%), majority  mother  have  history  of  thalassemia  minor i.e.;  52(86.67%), majority  49(81.67%) have  manifested  occurrence  of  thalassemia  of  any  other  sibling  in  family, majority of   parents  have  two  siblings  in  family  i.e.; 27(45%),majority i.e.; 32(53.33%)  have  history of  consanguineous  marriage, majority  child’s  thalassemia  was  diagnosed  at  the  age  between  3 - 4 years  i.e.; 29(48.33%), majority children  have  6 - 10 years  duration  of  treatment  i.e.; 30(50%).

Section – II:

Item wise analysis

In physical stress, majority i.e.; 74.16% of parents feels tired in caring their child. In psychological stress, majority i.e.; 82.50% of parents worry   about   uncertain   future   of   child’s   illness. In economic stress, majority i.e.; 74.16% of parents have to face financial deficit in providing adequate treatment for their child. In socio-cultural stress, majority i.e.; 79.16% of parents have interest in communicating with others cheerfully. In spiritual stress, majority i.e.; 90.83% of parents have faith on God.

Figure: 1 Pie diagram showing the item wise total scores analysis

Area wise analysis

Majority of the parents suffer from psychological  stress (Mean score -1.86%,SD-4.94, CV -36.78) followed by economical stress  (Mean  score- 1.80%, SD-2.33,CV -43.06) followed by spiritual  stress (Mean  score -1.78%, SD - 1.96, CV - 26.20) followed by socio - cultural  stress  (Mean  score -1.66%, SD - 3.55, CV  - 39.44 and the least found out is physical  stress (Mean  score  -1.42%, SD - 3.49, CV - 33.94).

Section – IV:

Criteria-wise total score

Majority i.e.; 27(45%) parents    had severe stress, 21(35%) parents had moderate stress and 12(20%) parents had mild stress.

Section–V:

Chi-square analysis                       

There was a significant association between the level of stress with    father’s age, mother’s age, developmental age, sex, birth order, father’s educational level, mother’s educational level, monthly income of family, occurrence of thalassemia of any other sibling in family and duration of treatment. There is no significant association between the level of stress with developmental age and sex of child. 

Figure: 2 Pie diagrams showing the criteria wise total scores analysis