Indian Journal of Social Psychiatry

ORIGINAL ARTICLE
Year
: 2022  |  Volume : 38  |  Issue : 2  |  Page : 131--136

Coping styles in parents of children with Thalassemia in West Bengal


Daliya Biswas1, Sourav Lo2, Aditya Prasad Sarkar3, Tanushree Mondal4, Dibakar Haldar3, Indrajit Saha3,  
1 Department of Community Medicine, North Bengal Medical College, Darjeeling, West Bengal, India
2 Department of Medicine, Bishnupur District Hospital, Bankura, West Bengal, India
3 Department of Community Medicine, Bankura Sammilani Medical College, Bankura, West Bengal, India
4 Department of Community Medicine, Medical College, Kolkata, West Bengal, India

Correspondence Address:
Dr. Tanushree Mondal
Bidyadhari Housing Cooperative Society, CC-7, Flat No. 503, Newtown, Narkelbagan More, Near Biswa Bangla Gate, Kolkata - 700 156, West Bengal
India

Abstract

Background: Thalassemia is stress inducing, and the parents of the affected child develop a variety of coping strategies in response to that stress. Objective: The objective of this study was to find coping styles adopted by parents of thalassemic children and to identify factors associated with their coping. Materials and Methods: This cross-sectional survey was conducted in 2016–2017 involving 96 randomly selected parents of thalassemic children attending the Thalassemia Clinic of Bankura Sammilani Medical College and Hospital. Data were collected via interview using predesigned questionnaire and Brief-COPE inventory. Analyses were done estimating mean and proportion and using Pearson correlation coefficient (r), unpaired t-test, analysis of variance, and multiple linear regressions. Results: Two third of participants were mothers (66.7%) accompanying thalassemic children. Majority of them were aged within 21–30 years (55.2%), Hindu (84.4%), rural inhabitants (96.9%) and belonged to backward class (60.4%). Majority (72.9%) were from joint family of lower socioeconomic strata (94.8%). The age of thalassemic children was 80.47 ± 42.49 (mean±sd) months. Most of them were male (53.1%). Majority of thalassemic children was born in first birth order (63.0%) and diagnosed before attaining first birthday (71.0%). More than 60% of the participants were using acceptance coping “a lot.” The most commonly used coping strategies were active coping, acceptance, planning, and religion. In multivariable analyses, overall coping was found to increase by 0.331 on every unit decrease of age at diagnosis of thalassemia of children and to decrease by 0.116 unit on every unit increase of age of respondents. Conclusion: Acceptance coping was used effectively rather than behavioral disengagement, which suggests that a positive attitude toward stress is present but needs to be better handled. Counseling and psychotherapy for parents of thalassemic children can be provided through an intervention program.



How to cite this article:
Biswas D, Lo S, Sarkar AP, Mondal T, Haldar D, Saha I. Coping styles in parents of children with Thalassemia in West Bengal.Indian J Soc Psychiatry 2022;38:131-136


How to cite this URL:
Biswas D, Lo S, Sarkar AP, Mondal T, Haldar D, Saha I. Coping styles in parents of children with Thalassemia in West Bengal. Indian J Soc Psychiatry [serial online] 2022 [cited 2022 Sep 30 ];38:131-136
Available from: https://www.indjsp.org/text.asp?2022/38/2/131/349341


Full Text



 Introduction



Thalassemia is characterized by severe-chronic anemia, growth retardation, hepatosplenomegaly, and bone deformities such as facial malformation and bulging forehead.[1] Around 4% of the existing population in India carries the thalassemic genes.[2]

Coping strategies mean a set of cognitive and behavioral efforts that are applied in order to interpret and correct a stressful situation and leads to the alleviation of suffering from it.[3]

Majority (60.6%) of the parents of thalassemic children are under stress[4] who develop a variety of coping strategies for tiding it over.[5]

Poor adaptability to stress usually induce psychosocial problems and marginalization along with negative attitude toward the child's illness.[6],[7]

Parenting of children with chronic disease requires coping with stressors, such as administering medication, helping child to manage their pain, frequent hospital visits, and helping the child to cope with negative feelings.[8]

Via psychological adjustment effective coping improves physical and psychological health and well being of individuals.[9]

Parents with appropriate coping behavior not only provide support to their children, but also coping patterns are often passed on to the child, creating a lineage of coping behaviors.[10]

Parental coping such as maintaining social support, self esteem, and psychosocial stability are associated with improvements in child health.[11]

Studies related to coping styles of parents of thalassemic children are limited in West Bengal, especially in the South Western zone of the state where a vast tribal population of lower socioeconomic strata with high prevalence of beta thalassemia trait[12] is catered mainly by government hospitals. Authentic data regarding their coping options are necessary to formulate strategy for providing them psychosocial support, if required.

With this background, the present study was conducted among the parents of thalassemic children attending thalassemia clinic of a peripheral medical college and hospital of West Bengal to find their coping styles and to identify the factors associated with it.

 Materials and Methods



An institution-based, cross-sectional survey was undertaken in thalassemia clinic of one of the medical colleges in West Bengal. The clinic is held once in a week (i.e., Tuesday). Around 20–25 children suffering from “hemoglobin 'H' disease” and “beta-thalassemia major” attend the clinic per clinic day with their predominant family caregivers either for blood transfusion at a regular interval or health checkup, Hb% estimation, and chelation therapy. The study was done from 2016 to 2017. Either of the parents accompanying the thalassemic children with duration of diagnosis of thalassemia at least 1 year was included in the study. Thalassemic children who were suffering from severe illness (e.g., severe anemia [Hb <7 g/dl], hepatitis B, and hepatitis C) were excluded from the study.

For the purpose of sample size calculation, the prevalence of coping styles of caregivers was assumed to be 50%. The sample size was calculated using the formula: n = (Z2 × pq)/d2 where n = sample size, P = prevalence of coping styles of caregivers = 50%, q = complement of P = 100 − p = 50%, Z = 1.96 (considering 95% confidence interval [CI], two-tailed), and d = absolute precision of 10%. Hence, the sample size was 100. Applying finite population correction (as n/Ń = 0.25 which is >0.05), the sample size was revised as per the following formula of finite population correction (fpc): fpc = √{(Ń−n)/(Ń−1)} = √{(400–100)/(400–1)} = 0.8671 (Ń = finite population size = 400), the revised sample size was 100 × 0.8671 = 87, and assuming 10% nonresponse rate, the final sample size was 96.

Either of the parents of the thalassemic children was selected by systematic random sampling. In most of the cases, the mothers were found as accompanying parents. If both parents of thalassemic children were present during the data collection, mothers were preferred due to greater attachment and care. Data were collected once in a week (on the clinic day, i.e., Tuesday). As on an average, 20 eligible thalassemic children attended per clinic day, so either of the parents accompanying every 5th child was approached. If the child had already been included, then the next one was attempted.

A predesigned, pretested structured interviewer-administered questionnaire (in Bengali language) was used. The first section was to know the baseline characteristics of the participants and their thalassemic children. The second section was for the assessment of coping styles of the participant using a 4-point Likert scale.

Baseline characteristics like age, sex, religion, caste, education, occupation, type of family, socioeconomic status (SES) of respondent parents and age, sex, birth order, age at diagnosis, frequency of blood transfusion of thalassemic children were included as study variables. Monthly average cost of treatment and transport for thalassemia were also considered. SES was assessed by the Modified and Updated BG Prasad Scale 2016.[13]

For assessment of coping styles, Brief-COPE, an abbreviated version of the COPE Inventory, was used.[14] The Brief-COPE, originally developed by Carver, was used to identify the coping strategies used by participants. It consists of 28 items which were categorized into 14 subscales (self-distraction, active coping, denial, substance abuse, use of emotional support, use of instrumental support, behavioral disengagement, venting, positive reframing, planning, humor, acceptance, religion, and self-blame). Items are arranged in a 4-point Likert format (1 = never, 2 = very less, 3 = sometimes, and 4 = a lot). The high score on each subscale indicates more use of that particular coping strategy, and the low score indicates less use of that coping strategy. The broad form of coping is adaptive (adaptive or constructive coping) and maladaptive (maladaptive coping or noncoping) coping. The adaptive dimensions are positive ways of coping from stress and include active coping, use of emotional support, positive reframing, use of instrumental support, planning, humor, acceptance, and religion. The maladaptive coping includes negative ways of coping from stress like 'self distraction', 'denial', 'venting', 'substance use', 'behavioral disengagement', and 'self blaming'.[15]

After obtaining approval from the institutional ethics committee of the medical college and informed consent, interview of either of the parents of thalassemic children was done using predesigned, pretested structured interviewer-administered questionnaire (in Bengali language). The schedule was translated into Bengali by language experts. Then, it was retranslated into English and compared with previous English version. Modification of question wordings was done to make them lucid, intelligible, and in logical sequence. Content validity of Brief-COPE was estimated by the help of nine senior faculty members of the department of community medicine of the medical college with a content validity ratio of 0.82. A pilot study using the validated tool was conducted, and the findings showed that the study was feasible and practicable. Cronbach's alpha of the Coping Styles Scale (Brief-COPE) was 0.804 showing good reliability. The participants were assured regarding their privacy and data confidentiality.

Data analysis

Data were entered into Microsoft (MS) Excel spreadsheet and analyzed with the help of MS Excel and Statistical Package for Social Sciences (SPSS) software 22.0 version ('International Business Machine (IBM) Corporation', Armonk, New York, USA). Descriptive statistics were expressed by mean and standard deviation (SD) for continuous and proportion for categorical baseline characteristics. Data were displayed by various charts and tables. Normality of the data set was tested by Shapiro–Wilk's normality test as well as various plots such as histogram, stems and leaf, and P-P plot. A score of coping and other continuous data followed a normal distribution. The relationship between coping styles and other variables was determined by bivariate analysis using Pearson correlation coefficient (r), unpaired t-test, and one-way analysis of variance with post hoc analysis (Tukey). Multiple linear regressions analyses were done to find the strength of association of different independent variables with coping styles. P ≤ 0.05 was considered as statistically significant with 95% CI.

Selected definition

Coping

It is an ongoing dynamic process that changes in response to the changing demands of a stressful encounter or event.[16]

 Results



Most of the participants (55.2%) belonged to the age group of 21–30 years. Around 2/3rd (66.7%) were mothers of thalassemic children. Majority of the participants were Hindu belonging to general caste coming from a rural area. Nearly 17% of the participants were illiterate; majority (72.9%) belonged to joint family. More than half (55.2%) of the participants belonged to lower SES class. Overall, nearly one in every ten (29.2%) of the participants had a history of addiction, most commonly to smoking/chewing tobacco (28.1%). Majority (73%) of the participants reported monthly blood transfusions of their children, and nearly 15% of them had to spend more than Rs. 2000/per month for the treatment of thalassemia [Table 1].{Table 1}

Most of the respondent mothers were homemakers (90.6%), and most of the participant fathers were either laborers (34.4%) or doing other jobs such as cultivation, working in private sector, and driving private car (34.4%).

The average age of the thalassemic children was 80.47 ± 42.49 (mean ± SD) months with 34.38% of under-fives and 53.10% of males. Majority (63.0%) were born in first order, 26.0% in second order, and 11.0% in third or above order of birth. Around seven out of every ten were diagnosed as thalassemic before attaining the first year of life, 23.0% between 1 and 4 years, and 6.0% beyond 4 years of age.

Most of the thalassemic children reportedly had educational status at primary level (65.0%) and the rest were middle school-goers.

More than 60% of the participants were using acceptance coping “a lot.” The most commonly used coping strategies were active coping, acceptance, planning, and religion, while the least commonly used coping strategies were humor and substance use [Table 2].{Table 2}

The mean score of coping was the highest in acceptance domain, and it was 6.78 ± 1.7 and lowest in humor domain (2.13 ± 0.5) [Table 3].{Table 3}

In bivariate analyses, a statistically significant negative relationship between age of the participants (r = −0.428, P = 0.000) and age at diagnosis of thalassemia in their children (r = −0.242, P = 0.017) with overall coping was found. There was a significant positive relationship between monthly treatment cost for the disease (r = 0.275, P = 0.007) and overall coping. The mean score of overall cope was highest in participants who had first order thalassemic children, and the difference was significant compared to the participants having third birth order thalassemic children (67.42 ± 9.7 vs. 58.91 ± 7.8 [F2, 93 = 3.885, P = 0.024]).

In multiple linear regressions analyses, overall coping was found to decrease by 0.331 and 0.116 unit on every unit increase of age at diagnosis of thalassemia of their children and every unit increase of age of the participants [Table 4].{Table 4}

 Discussion



The present study revealed that out of a total of 96 thalassemic children, 66.67% were accompanied by mothers and 33.33% by fathers, a common Indian scenario of male bread earning. A similar result was explored by other researchers.[7],[17],[18],[19] However, Yengil et al. reported 44.4% of the female participants.[20] Majority of the participants (94.8%) from lower socioeconomic status are also corroborating to what was reported by Saldanha (65.0%).[19] The mean age of thalassemic children in the present study was somehow lower compared to a Sri Lankan study done in 2018 (80.47 ± 42.49 months vs. 10.9 ± 3.6 years).[21] Difference in age structure of the thalassemic children involved in the study is the probable explanation of this variation. Nearly two third of respondents (62.5%) in this study had thalassemic children of first birth order as observed in similar other studies.[17],[19],[22]

As evident from the average coping score as well as proportions, the most commonly used coping strategies in the current study were acceptance, active coping, planning, use of emotional/instrumental support, and religion, which are known as positive copings to improve functioning [Table 2]. However, a portion of the participants was also found to practice maladaptive coping such as self-blame and self-distraction, which are more effective as short-term measures just to reduce symptoms in the initial phase after diagnosis while maintaining and strengthening the disorder rather than long-term coping process.[15] These observations are some extent comparable to that explored by Ali et al. in 2012 in Pakistan where 92.5% of the participants used acceptance, active coping (97.5%), planning (95%), and religion (92.5%) and 15% of the participants used humor and substance use coping (7.5%).[7]

Acceptance involves the deliberate taking in or actively contacting psychological experiences without needless defense.[15] In the study, majority of the parents had thalassemia children who were diagnosed more than 5 years back. With the tide of time, acceptance became the major coping style. Humor is a natural stress reducer and symptom reliever that has been related to improved health. However, in the present study, natural stress-reducing strategies had not been adopted so frequently by the participants. Self-blaming present among 35% of the participants of this study as a coping resort has similarity with the observation made by Khairkar et al. but lower in contrast to the results of Ali et al. which reported 92.5%.[7],[18] However, denial as a coping reaction was lower (38%) than these two studies (60% and 80%).[7],[18] The reason may be that denial is the immediate response to such stressful situation which causes isolation and avoidance from that situation. With the gradual passage of time, as in the longer duration of thalassemia in the present study, the affected individuals get more and more reconciled to reality, thereby shunning the sanctuary of denunciation, and thence onward the expression of denial gradually shifted to acceptance.

Multiple linear regressions analysis revealed that the age of the participants was found to hold a negative association with overall coping. This might be because of the fact that caregivers have a better ability to deal with the situation and greater flexibility to adopt coping strategies at younger age. Comparatively, elder parents who got their children diagnosed as thalassemic could not show a better ability to cope with the situation.

In this study, there was a negative correlation between children's age at diagnosis of thalassemia and overall coping of their parents. In case of diagnosis at later age, children might have gone through lots of investigations at various health facilities for getting diagnosed with this chronic disease. It might lead to financial burden, dissatisfaction, mental upset of the parents hampering adaptation of their coping strategies irrespective of their age. Hence, the younger the participants and earlier the age at diagnosis of thalassemia of their children, the more is the coping of the participants.

This study has imitations such as failure of recall on the part of the participants, absence of a comparison between the parents of healthy children or with children suffering from thalassemia minor. Involvement of one TCU of West Bengal, restraints the external validity of this study. Equal participation of fathers of thalassemic children selected via random sampling could have increased the internal validity of the study. A multicenter study with larger sample size may be helpful in formulating strategies on this issue.

 Conclusions



The findings of the study clearly pointed out that thalassemia is a stressful event faced by the parents, and they are not using coping mechanisms adequately in order to deal with it. Acceptance coping was used effectively rather than behavioral disengagement, which suggests that a positive attitude toward stress is present but needs to be better handled. Therefore, counseling and psychotherapy for the parents of thalassemic children can be provided in an intervention program.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

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