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ORIGINAL ARTICLE
Ahead of print publication  

Caregiver burden and psychiatric morbidity among caregivers of children with thalassemia major: A cross-sectional study


1 Department of Psychiatry, SMT NHL Municipal Medical College, (Affiliated under Gujarat University), Ahmedabad, Gujarat, India
2 Department of Psychiatry, PDU Medical College, Rajkot, Gujarat, India
3 Department of Psychiatry, Banas Medical College and Research Institute, Palanpur, Gujarat, India

Date of Submission31-Aug-2020
Date of Decision25-Jan-2021
Date of Acceptance25-Jan-2021
Date of Web Publication02-Apr-2021

Correspondence Address:
Nisha Kanaiyalal Prajapati,
B/27 Kirti Tenaments, Jagatpur Road, Chandlodia, Ahmedabad - 382 481, Gujarat
India
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/aip.aip_95_20

  Abstract 


Background: Caregivers of children with thalassemia major experience higher caregiver burden and psychiatric morbidity. Aims: The aims of this study were as follows: (1) to assess the caregiver burden and psychiatric morbidity among caregivers of children with thalassemia major and (2) correlation between caregiver burden and psychiatric morbidity. Settings and Design: This was an observational, cross-sectional study carried out at the tertiary care hospital setup among 245 caregivers of children with thalassemia major. Subjects and Methods: Sociodemographic details of children and their caregivers and clinical variables of children were obtained. The Caregiver Burden Scale and General Health Questionnaire (GHQ)-12 were applied. Psychiatric diagnosis was made after clinical interview as per the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Statistical Analysis Used: Chi-square test, t-test, analysis of variance, and Pearson coefficient correlation were used for statistical analysis. Results: 33.06% were having severe burden, 30.61% moderate-to-severe burden, 27.34% mild-to-moderate burden, and 8.97% were having little or no burden. 13.46% of caregivers had psychiatric illness, out of which 8.57% had major depressive disorder, 4.08% generalized anxiety disorder, and 0.8% alcohol use disorder. “Weakly positive correlation” (P = 0.0284) was found between GHQ score and burden score. Conclusions: Higher caregiver burden and presence of psychiatric morbidity among caregivers of thalassemia children suggest that caregivers should be screened at regular intervals for early detection and management of psychiatric morbidity. Social and professional networks for psychosocial support and self-help groups should be planned for caregiver burden.

Keywords: Caregiver burden, caregivers of thalassemia, psychiatric morbidity



How to cite this URL:
Prajapati NK, Samani MJ, Jani AM. Caregiver burden and psychiatric morbidity among caregivers of children with thalassemia major: A cross-sectional study. Ann Indian Psychiatry [Epub ahead of print] [cited 2021 Apr 20]. Available from: https://www.anip.co.in/preprintarticle.asp?id=312913




  Introduction Top


Beta-thalassemia is an autosomal recessive disorder caused by defect in the globin chain synthesis of hemoglobin.[1] With the birth rate of 22.8 per 1000 in India, there are about 65,000–67,000 beta-thalassemia children and about 9000–10,000 cases are being added every year.[2]

Cooper found out that the consequences of caring are high in the life of a family member who bears maximum responsibility.[3] They have to cope up with the psychosocial aspects along with their regular visits to the thalassemia centers for blood tests and blood transfusion with iron chelation therapy which may lead to psychosocial burden and worsening of the relationship among family members.[4] They experience negative thoughts about their life, guilt, increased anxiety, and low self-esteem.[5] We hypothesized that caregivers of children with thalassemia major experience higher caregiver burden and psychiatric morbidity. As per “Rights of Persons with Disabilities Act, 2016,”[6] thalassemia is also included as a disability. Although caregivers of children with disability face a great extent of burden and psychological consequences, this problem is not much addressed in the current psychiatric intervention for burden-related problems and very little literature is available on the psychiatric illness among caregivers of thalassemia children in India particularly. The current literature in India shows that 60% of caregivers are burdened[7] and 16% of caregivers developed moderate depression as well as 10% of caregivers had anxiety[8] while caring for thalassemia children. With this background, this study was aimed to assess the prevalence of caregiver burden and psychiatric morbidity among caregivers of thalassemia children. This study is different from others as here correlation of caregiver burden with psychiatric morbidity is also assessed which in our knowledge is for the first time in the literature.


  Subjects and Methods Top


Setting and study design

This is a cross-sectional study in a clinical setting without the use of a control group on caregiver of children with beta-thalassemia major taken from the pediatric department of a tertiary care hospital, Rajkot, during the period from July 2017 to June 2018. In the present study, any adult first-degree relative who accompanied the thalassemic child during a visit to the thalassemia unit of the pediatric department of the hospital for blood transfusion and treatment and currently living with and taking care of the patient was considered as a caregiver. The sample size was calculated using an online calculator considering confidence interval 95%, and the approximate sample size required was 246. A simple random sampling method was used. Hence, consenting caregivers of all the thalassemia children enrolled in pediatric thalassemia ward for blood transfusion were included. During the study, a total of 257 children with thalassemia were approached, but among them, few were siblings. Hence, actually 245 caregivers were there who all gave consent and included in the study. For the purpose of planning sampling methods, all the consecutive caregivers coming to thalassemia ward were included. Excluded from the study were caregivers having psychiatric morbidity before diagnosis of thalassemia major. Tobacco use disorder was excluded from psychiatric illness due to wide prevalence in the regional population.

Ethical statement

This study was approved by the institutional ethics committee before commencement of the study with reference number PDUMCR/IEC/2725/2017 obtained on February 14, 2017.

Informed written consent was given by all participants following explaining the purpose, procedure, and duration of involvement in the study procedure as well as voluntariness and confidentiality regarding participation.

Instruments and procedure

A standard pro forma was used to record the sociodemographic details of caregivers which included information about age, domicile, religion, education, occupation, marital status, type of family, number of family members, and per capita income along with clinical variables for children with thalassemia such as age of onset, frequency of blood transfusions, history of splenectomy, chronic diseases, transfusion-related infections, and use of chelation therapy.

All the caregivers were evaluated with the Zarit Burden Interview (ZBI)[9] (Caregiver Burden Scale), a popular caregiver self-report measure. The revised version contains 22 items. Each item on the interview is a statement which the caregiver is asked to endorse using a five-point scale. Response options range from 0 to 4 (never, rarely, sometimes, quite frequently, or nearly always). The ZBI measures caregiver burden according to the presence or intensity of an affirmative response and measures the caregiver's health, psychological well-being, social life, finances, and the relationship between the caregiver and patient. The Burden Interview is scored by adding the numbered responses of the individual items. Higher scores indicate greater caregiver burden. The Cronbach's alpha value for the ZBI items was 0.93; the intraclass correlation coefficient for the test–retest reliability of the Zarit burden score was 0.89.[10]

Caregivers were also screened using the General Health Questionnaire (GHQ)-12[11] to assess possible psychological distress. Bimodal scoring method was applied for scoring of GHQ, and a cutoff of two or more was taken. Caregivers, who scored positive for GHQ assessment, were again evaluated by detailed clinical psychiatric interviews for the presence of any psychiatric disorder. GHQ-12 showed high internal reliability (Cronbach's alpha of 0.82) and had adequate psychometric properties for the detection of common mental disorders (sensitivity of 68.75%; specificity of 73.14%).[12] As tobacco use disorder was very common in the same setup, its assessment and diagnosis were excluded in this study. Diagnosis was made using the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) criteria. In the present study, questionnaires were filled up in one-to-one interview setting and psychiatric diagnosis were confirmed by a clinical interview by a psychiatric resident doctor under supervision of a consultant psychiatrist which not only boosts the authenticity of study methodology but also provides the opportunity to the participants for asking any questions if they have. After collecting all relevant information, the data were statistically analyzed using Microsoft Excel. All the collected data were appropriately tabulated, and data were analyzed to find out statistical significance with the help of t-test, analysis of variance, and Chi-square test. A probability value <0.05 was taken as statistically significant. Pearson correlation coefficient was used to find out correlations between scales. In good faith of caregivers having psychiatric morbidity, they were provided care and guidance for facilities available for treatment of psychiatric disorders and referred to the psychiatric department.


  Results Top


Sociodemographic profile of caregivers of thalassemia children and sociodemographic and clinical profile of children with thalassemia

As depicted in [Table 1], the majority (94.68%) of the caregivers were <45 years of age. Male and female distribution was almost equal (51.4% and 48.5%, respectively). 13.06% of caregivers were illiterate, 0.8% were unemployed, and 23.6% belonged to nuclear families. The majority of the caregivers were married (96.3%), and 4.8% of caregivers had one other child with thalassemia. The clinical and sociodemographic variables of children having thalassemia major are depicted in [Table 2], which shows that 45.2% of children belonged to <5 years of age and a number of male and female children were almost equal (48.9% and 51.2%, respectively). The majority of the children (83.1%) were diagnosed with thalassemia before 1 year of age. The highest frequency of visit to hospital for blood transfusion was twice a month found in 19% of children. 1.6% of children underwent splenectomy and 4% had transfusion-related infections.
Table 1: Sociodemographic data of the caregivers of thalassemia major children

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Table 2: Sociodemographic characteristics and clinical details of children with thalassemia major

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Magnitude of caregiver burden and psychiatric morbidity

33.06% of caregivers were having severe burden, 30.61% were having moderate-to-severe burden, 27.34% were having mild-to-moderate burden, and 8.97% were having little or no burden. As depicted in [Table 3], GHQ 12 was found positive for 22% of caregivers. They were clinically interviewed for the presence of psychiatric illness, and diagnosis was made according to the DSM-5 criteria. [Figure 1] shows that 8.57% of patients were diagnosed with major depressive disorder, 4.08% generalized anxiety disorder, and 0.8% with alcohol use disorder.
Table 3: Psychiatric illness among General Health Questionnaire score-positive caregivers

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Figure 1: Prevalence of psychiatry morbidity among caregivers of children with thalassemia major

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Association of caregiver burden with sociodemographic characteristics of caregivers and clinical variables of children with thalassemia major

There was no statistically significant difference in severity of caregiver burden with sociodemographic variables of caregivers such as age, gender, area of domicile, religion, education, occupation, marital status, type of family, number of children with thalassemia, and socioeconomic status. Furthermore, there was no statistically significant difference in severity of caregiver burden with sociodemographic and clinical variables of children with thalassemia such as age, gender, age at diagnosis of thalassemia, frequency of blood transfusion, history of splenectomy, chronic medical illness, transfusion-related infection, and use of chelation therapy.

Association of psychiatric illness with sociodemographic characteristics of caregivers and clinical variables of children with thalassemia major

There was no statistically significant difference between presence of psychiatric illness and sociodemographic variables of caregivers except gender (P = 0.02). Males had a significantly higher rate of psychiatric illness than females, i.e., out of total 51.4% of males in the study, 18% of males had psychiatric illness compared to 8.4% of females out of 48.5% of total females. There was no significant difference in sociodemographic and clinical variables of children with thalassemia with psychiatric illness.

Correlation between caregiver burden and psychiatric morbidity

As depicted in [Figure 2], Pearson correlation coefficient was found to be 0.14 which suggested “weakly positive” correlation between GHQ score and caregiver burden score severity. P = 0.028 was considered statistically significant (P < 0.05).
Figure 2: Pearson correlation showing correlation between General Health Questionnaire score and severity of caregiver burden score

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  Discussion Top


As depicted in [Table 1], out of 245 caregivers studied, the majority of the caregivers (94.68%) belonged to below 45 years. Similarly, in a study by Aziz et al.,[4] all the caregivers (100%) were below 45 years of age. This is explained by the parents being the primary caregivers. It is assumed that mothers are primary caregivers for children, which is also reported in a study by Sodani et al.[13] and Maryam Alizadeh et al.[14] showing a higher number of female caregivers than males (96% and 76%, respectively), whereas in the present study, male and female caregivers were found almost equal in number (51.42% of males and 48.57% of females). These findings differ from the study by Rajput et al.[8] which showed a greater number of male caregivers (60.8%) compared to females. In the present study, the majority of the caregivers were married, living in a joint family, and had one child with thalassemia major. In the present study, only 13% of caregivers were illiterate, whereas in a study by Aziz et al.,[15] 43% of caregivers were illiterate.

As shown in [Table 2], 45.2% of children belonged to <5 years of age and the number of male and female children was almost equal (48.9% and 51%, respectively), whereas in a study by Aziz et al.,[15] they found a more number of male children than females (66% and 34%, respectively). The majority of the children (83.1%) were diagnosed with thalassemia before 1 year of age. Similar findings were observed in a study by Biswas et al.[16] where most of the thalassemic children were diagnosed as thalassemic within the 1st year of their lives (55.9%) The highest frequency of visit to hospital for blood transfusion was twice a month found in 19% of children. In a study by Alizadeh et al.,[14] the highest frequency of visits for blood transfusion was once per month (58.5%). 1.6% of children underwent splenectomy and 4% had transfusion-related infections (HIV and HCV). In contrast to that in the study by Biswas et al.,[16] 19.4% had undergone splenectomy and 39.8% were suffering from transfusion-related infections which were higher than the present study. Two percent of children had chronic medical illness other than thalassemia (diabetes mellitus) which may add to the burden.

Overall, 91% of caregivers were burdened in the present study, out of which 8.97% had little or no burden, 27.34% had mild-to-moderate burden, 30.6% had moderate-to-severe burden, and 33% had severe burden. In India, the family plays an integral role in the delivery of healthcare, in that family members provide for basic physical needs of patients, including hygiene and nutrition, and hence get burdened. Moreover, discrimination from relatives and neighbors impairs a caregivers' quality of life which was observed in a qualitative study conducted in Iran by Shahraki-Vahed et al.[17] among parents of thalassemic children where a mother opined “Everybody reproaches us, including relatives and strangers. They allow themselves to talk about our child disease, unfairly and unreasonably… Thus it is not wondering if this behaviour hurts a mother…” which is reflected as only 8.9% of participants in this study reported little or no burden in the study. This rate of 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, traveling, and other social problems. Caregivers also have to face the social isolation, fear of subsequent children with thalassemia, and guilt of genetic contribution of thalassemia to the child. 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 against life situations and make them more prone to suffer from depressive disorders.[18]

In an Indian study by Inamdar et al.,[7] parents were assessed by Zarit Burden Scale which is the same scale used in the present study and 60.6% were burdened due to thalassemia illness of their children, which was lower than the present study which may be due to the effective coping by the caregivers. In a study by Mashayekhi et al.[19] in Iran, 20%, 29%, and 51% of mothers reported high, moderate, and low levels of burden, respectively, which are lower than the present study which may be due to the difference in sociocultural factors. Furthermore, they used the Caregiver Burden Scale by Elmstahl et al. which is different from Zarit burden score. Hence, results are not directly comparable. Another study by Maryam Alizadeh et al.[14] found that 45.8% of caregivers of thalassemia children tolerated high burden, which used the Zarit Caregiver Burden Scale-12.

In the present study, there was no statistically significant difference in severity of caregiver burden with caregivers' age, gender, education, and socioeconomic class, whereas Muazzam and Javed[20] found that younger age and female gender were associated with higher caregiver burden, and the difference was statistically significant. Mashayekhi et al.[19] reported significant differences in severity of caregiver burden with age of caregivers.

As shown in [Figure 1], in the present study, 8.5% of caregivers had major depressive disorder, 4% had generalized anxiety disorder, and 0.8% had alcohol use disorder. Various literature reviews showed different levels of psychiatry morbidity in caregivers of thalassemia children. In a study by Rajput et al.,[8] moderate levels of depression (16.06%), anxiety (10.44%), and stress (19.11%) were found. They have applied a 42-item DASS and used a different method than the two-step process used in the present study. Shaligram et al.[21] studied that 57% of the caregivers had psychiatric problems, with depressive disorders in 19/44 (45%), which was higher than the present study. They have studied only depression and that in a relatively small sample of 79 caregivers where in-depth detail categorization of depressive disorders was feasible using the International Classification of Diseases, Tenth Revision, whereas overall psychiatric illness in a comparatively large sample (245) than this was studied in the present study.

In a case–control study by Sharghi et al.,[18] 51% of mothers of thalassemic children and 31.4% of mothers of control groups had Beck Depression Inventory (BDI) score higher than 18. It was a case–control study based on BDI rather than one-to-one interview-based diagnosis of psychiatry disorder using DSM-5 used in the current study.

In another study by Yengil et al.,[22] BDI and Beck Anxiety Inventory were used among sample of 63 caregivers of thalassemia children, and depression was found in 28.6%, anxiety symptoms were mild in 23.8%, moderate in 15.9%, and severe in 1.6% of caregivers, which was different from the present study because they have taken 12 years and older children in the study whose caregivers were assessed using application of scales rather than clinical interview and diagnosis. Aziz et al.[4] used self-administered Patient Health Questionnaire-9 for assessment of depression and found 29% depression among 100 caregivers of thalassemia children, among which 71% were mothers. As per the year 2018 study by Hisam et al.[23] using the Perceived Stress Scale among the thalassemia caregivers, 20.8% were having mild stress, 13 27.1% were having moderate stress, while 52.1% were having severe stress.

There was no significant difference in the presence of psychiatric illness and education in the present study. Similar findings were reported by Shaligram et al.[21] and Sharghi et al.,[18] whereas Rajput et al.[8] and Aziz et al.[15] found significant differences with education. There was a significant difference in the presence of psychiatric illness and gender (P = 0.02) of caregivers. In spite of almost equal gender distribution in the present study, psychiatric illness was more among males (9.3%) than female caregivers (4%). In a country like India, mother is usually considered as the primary caregiver and hence psychiatric illness was expected more among females than males, which is contradicted in the present study which might suggest that males have equal vulnerability and caregiving experiences as female or rather more than female. In the present study, tobacco use disorder was excluded from psychiatric illness which can be explained here that as per the literature, tobacco use disorder is higher among males than females[24] and therefore can increase the prevalence of psychiatric illness among males than females and which may not be directly related to caring for thalassemia children. Similarly, Rajput et al.[8] studied that psychiatric illness was higher among males than female caregivers which showed a higher number of male caregivers (60.8%) compared to females.

In the present study, there was no statistically significant difference between mean caregiver burden as well as psychiatric morbidity and sociodemographic and clinical variables of children with thalassemia such as age, gender, age of diagnosis, history of splenectomy, chronic disease, transfusion-related infections, and use of chelation therapy. Hence, psychiatric morbidity was found to be related to the caregiving experience per se which is unrelated to the above factors. similar to our study, in study by Khairkar et al there was no statistically significant difference in psychiatric illness with age of diagnosis of thalassemia in children. An inverse relationship of splenectomy and CarerQoL score was found in a study by Biswas et al.,[16] in which caregivers whose ward was receiving less than the median number of blood transfusions (12 units) in the previous year had significantly higher odds of having favorable CarerQoL. Although reduced blood transfusion will lead to less transfusion-related complications, there was no statistically significant difference between caregiver burden and frequency of blood transfusion.

In the present study, further advancement was correlation of caregiver burden with psychiatric illness. The correlation between caregiver burden and psychiatric illness was assessed by Pearson correlation. The Pearson correlation coefficient was 0.14 (P = 0.028) which suggested the “weakly positive” correlation between GHQ score and burden score. Which means that psychiatric illness tend to increase with increased caregiver burden but this relationship is not very strong. We did not find any literature for correlation of severity of caregiver burden and psychiatric illness.

The novel aspect about This is one of the very few studies which evaluated both the caregiver burden and psychiatric morbidity and further correlation of both especially in India. In the present study, the correlation between the caregiver burden and psychiatric morbidity was also assessed which is for the first time in the literature in our knowledge.

Limitation

There was no control group in this study, so direct comparison of prevalence and pattern of psychiatric illness with the general population was not possible. The study was conducted on the caregivers attending pediatric thalassemia ward of a tertiary care hospital. These caregivers may not be representative of all the individuals in the community, especially those who are consulting their children to private hospitals. A larger sample size is needed to comment more accurately on the caregiver burden and prevalence and pattern of psychiatric illness among caregivers of thalassemia children. Due to the smaller sample group, some of the variables were not statistically significant which may be significant at larger sample groups. In this study, severity of psychiatric illness was not assessed. Therefore, direct correlation of severity of psychiatric illness with severity of caregiver burden could not be established. Present was not interventional study hence those having psychiatric illness were referred to the psychiatric department and hence future research can be conducted including the intervention of those diagnosed with psychiatric illness. In present study no intervention is done for caregivers diagnosed with psychiatric illness. Hence Interventional studies for the same can be implemented in future.


  Conclusions Top


From the present study, it is concluded that the majority of the caregivers were burdened due to thalassemia major illness of their children and some caregivers also suffered from psychiatric illness. Correlation between caregiver burden and psychiatry morbidity was weakly positive. Results of the study indicate that approaches need to be more family centered than just patient centered. Special units involving psychiatric experts for addressing psychiatric morbidity of caregivers of thalassemia should be facilitated and caregivers should be screened at regular intervals for early detection and management of psychiatric morbidity in order to provide better caregiving to the thalassemia children. Social and professional networks for psychosocial support and self-help groups should be planned for support and counseling for reducing the caregiver burden of caregivers of children with thalassemia major.[25]

Declaration of patient consent

A caregiver consent statement was taken from each caregiver as per institutional ethics committee approval along with consent taken for participation in the study and publication of the scientific results/clinical information/image without revealing their identity, name, or initials. The participant is aware that although confidentiality would be maintained, anonymity cannot be guaranteed.

Acknowledgment

This study was carried out with the sincere help of Dr. Krunal H Patel, Consultant Psychiatrist, at Hospital for Mental Health, Ahmedabad.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

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