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 Table of Contents  
ORIGINAL ARTICLE
Year : 2020  |  Volume : 7  |  Issue : 1  |  Page : 38-44

Problems and strain of caregivers of urban older adults: An exploration


Department of Geriatric Mental Health, King George's Medical University, Lucknow, Uttar Pradesh, India

Date of Submission20-Sep-2019
Date of Decision15-Dec-2019
Date of Acceptance18-Jan-2020
Date of Web Publication29-Jun-2020

Correspondence Address:
Dr. Nisha Mani Pandey
Department of Geriatric Mental Health, King George's Medical University, Lucknow, Uttar Pradesh
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jgmh.jgmh_38_19

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  Abstract 


Background: Due to the ever-changing psychosocial priorities and changes in family paradigms, care of older adults (aged 60 years and above) is often being experienced difficult. However, studies have hardly been done in this direction to elicit caregivers' experiences. The present article explores the problems and strain faced by the caregivers of urban older adults and discusses the basic differences faced during care of the healthy (elderly with no discernable illness) and unhealthy (elderly with single or multiple morbidity[ies]) older adults. Methods: The data were extracted from an extramural ad hoc research project sponsored by the Indian Council of Medical Research. It was a cross-sectional study, in which 1163 caregivers, aged 18 years or more, were interviewed. They were asked to share experiences for caring their elderly. It was revealed that around 57% (n = 661) of caregivers were taking care of unhealthy (elderly with psychiatric disorders, physical diseases, organic disorders, or two or more morbidities) older adults, whereas 43% (n = 502) of caregivers were taking care of healthy older adults. The Problem Checklist and Strain Scale was administered and the obtained data were analyzed applying percentages, mean, standard deviation, and χ2 test. Results: The mean age of caregivers was 43.64 ± 13.8 years for males and 44.57 ± 12.42 for females; females outnumbered males (59.4%) as primary caregivers. Irrespective of health conditions, majority of the caregivers reported that they experienced problems (73.86%) and strain (70.59%) due to their caregiving responsibilities. The pertinent issues have been analyzed and discussed. Conclusion: Majority of the caregivers of older adults experience problems and strain, which is an alarming situation. This may further negatively affect the well-being and quality of life of the elderly. Therefore, there is a need to thoroughly study the caregivers' aspects and introduce remedial strategies so that the elderly and caregivers both can lead a better life.

Keywords: Caregivers, multiple morbidity, neuropsychiatric disorders, problems-behavioural emotional and cognitive, self care and functioning, strain


How to cite this article:
Tripathi RK, Tripathi SM, Pandey NM, Singh B, Tiwari SC. Problems and strain of caregivers of urban older adults: An exploration. J Geriatr Ment Health 2020;7:38-44

How to cite this URL:
Tripathi RK, Tripathi SM, Pandey NM, Singh B, Tiwari SC. Problems and strain of caregivers of urban older adults: An exploration. J Geriatr Ment Health [serial online] 2020 [cited 2020 Jul 2];7:38-44. Available from: http://www.jgmh.org/text.asp?2020/7/1/38/288238




  Introduction Top


In old age, majority of individuals become dependent on the family members (caregivers) for their care and management. Furthermore, the caregivers often experience problems or strain in providing care to these elderly irrespective of their health conditions. Many times, it has been experienced that in spite of all facilities provided, the elderly of the family will not be satisfied with the care they are getting or the caregivers often experience problems and strain during providing care to their elderly be it physical, psychological, social, emotional, financial, and/recreational. Caregiver distress and burden have been well documented in literature,[1],[2],[3],[4],[5],[6],[7],[8] and reviews indicate prolonged consequences of poor physical and emotional health.[9],[10] Problem behavior has been reported to be the most stressful aspect of caregiving,[11],[12] which contributes to increased burden for caregivers.[2] Problem behaviors can have a major impact on caregivers. Researchers and practitioners have identified a number of problem behaviors related to Alzheimer's dementia (AD).[1] These include paranoid and delusional ideation, hallucinations, aggressiveness, affective disorders, and problems with the activities of daily living (ADL).[13],[14] Scattered studies reported caregivers' problems with different disorders such as dementia,[1],[14],[15],[16] schizophrenia,[17],[18] and affective disorders.[6]

All these studies report problem behavior of the elderly due to which the caregiver becomes distressed; however, hardly any study reports on what kind of problems and strain is being experienced by the caregiver of the elderly and if there is any difference of opinion in such experiences of the elderly with/without health issues. The authors had an opportunity to retrospect on the data of a large epidemiological study titled “An epidemiological study of the prevalence of neuro-psychiatric disorders with specialreference to cognitive disorders amongst (urban) elderlycommonly known as Lucknow (urban) elderly study,”[19] which was sponsored by the Indian Council of MedicalResearch (ICMR) and carried out in the Department of Geriatric Mental Health. In this study, health problems of the elderly were assessed thorough physical and mental health examination. And at the same time or as per appointment, consent of their caregivers was also taken to participate in the interview for sharing their experiences on the Problems and Strains Scale. The present article aimed to provide the experiences of caregivers taking care of their elderly. The objective of the present article is to study the problems and strains experienced by the caregivers of healthy and unhealthy urban older adults and to explore the differences in the nature and magnitude of problems and strains faced by caregivers of urban older adults with/without health issues.

Hypothesis: Caregivers of healthy/unhealthy older adults may be experiencing variable extents of problems and strains during providing care to their near and dear ones.


  Methods Top


The parent study was carried out in the two randomly selected urban wards of the city. It was a cross-sectional study, and a total of 1216 elderly were identified, recruited, and assessed in the parent study. During the study, a total of 1163 caregivers (a person living for more than 2 years in the same house and was most concerned for the care of the older adult was considered as a caregiver) of these elderly with variable health issues (normal/healthy = 502; neuropsychiatrically ill [including mild cognitive impairment and dementia] = 55 [41 + 14]; medically ill = 449; and multiple morbidities = 157) were interviewed using the Problem Checklist and Strain (PCLS) scale. Health-related diagnosis of the elderly was made on the basis of detailed interview through various screening and assessment tools by qualified researchers, and the details of the study have already been published.[20] After getting consent from the caregivers, their basic details were obtained and they were interviewed through the following checklist:

Problem Checklist and Strain scale

PCLS was developed by Gilleard.[21],[22],[23] There are 34 items in the problem checklist, which are rated on a 3-point scale as follows: not present, occasionally occurring, and frequently/continually occurring. The obtained scores were further divided into five categories as follows: 0 – no problem, 1–17 – mild problem, 13–34 – moderate problem, 35–51 – severe problem, and 52–68 – profound level of problem. The items were divided into four broad categories as follows: behavioral problems, emotional problems, cognitive problems, and problem in self-care and functioning. The strain scale contains 13 items. These items are dangers, embarrassment, sleep, coping, depression, worry, household routine, frustration, enjoyment of role, holidays, finance, health, and attention. The items are rated on a 3-point scale as never, sometimes (mild), and a great deal of time (moderate).

Study procedure

The randomly selected urban wards of the study area were visited from the right corner. Houses with at least one family member aged 55 years (preelderly) and above were identified and listed (”in families”) as per the protocol of the study,[19],[20] simultaneously caregivers were also identified. Documentary proofs (documents/method/anecdotal events, etc.) were considered to ascertain the age of the study participants (elderly/caregivers). Family details of “in families” were obtained in a semi-structured sociodemographic pro forma. Written informed consent of the included participants (elderly and their caregivers) was obtained on a proper pro forma (consent form). To screen cognitive, neuropsychiatric, or physical problems among the study participants (elderly), the Survey Psychiatric Assessment Schedule (SPAS)/Mood Disorder Questionnaire (MDQ) and Physical and Neurological Examination were applied. Moreover, detailed assessments were done applying the Schedule for Clinical Assessment in Neuropsychiatry-based clinical interview and the Cambridge Examination of Mental Disorders for the Older Adults-Revised on SPAS/and MDQ-positive individuals for ascertaining cognitive/neuropsychiatric disorders. Routine as well as specific pathological investigations were done as per the requirement and to confirm diagnosis. Other documentary proofs (available prescription, pathological and radiological investigations, and other records) were also taken in consideration for confirming the particular diagnosis. The International Classification of Diseases-10 criteria [24] were followed for assigning the diagnostic category. After comprehensive assessment of the elderly, their caregivers were also assessed on PCLS. On the basis of the above information, the participants (elderly) were finally categorized into the following groups:

  • Group A: Normal/healthy group (participants without discernible abnormality on medical, neuropsychiatric, or cognitive disorder)
  • Group B: Neuropsychiatric group (participants having diagnosable neuropsychiatric disorders only)
  • Group C: Organic group (participants having diagnosable cognitive disorders only)
  • Group D: Physically ill group (participants having diagnosable physical illness only)
  • Group E: Neuropsychiatric group with comorbid organic as well as physical illness
  • Group F: Neuropsychiatric group with comorbid physical illness
  • Group G: Organic disorder with comorbid physical illness
  • Group H: Neuropsychiatric group with comorbid organic illness.


In the main study, there were eight independent subgroups, however, for the present article, A to D groups continued to be the same, whereas E to H have been merged in category E and named as multiple morbidity group (E). Data were further analyzed applying percentage, mean, standard deviation (SD), and Chi-square test with Yate's correction and interpreted in a qualitative manner.


  Results Top


[Table 1] provides the sociodemographic details of the caregivers.
Table 1: Age and sex details of the caregivers

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Majority of the caregivers were female (691 [59.42%]). In both group of caregivers, majority belonged to the age group of 37–54 years (males = 43.01% and females = 54.70%) followed by 18–36 years (males = 34.11% and females = 29.23%); in the 55–72 years' age group, the proportion of males and females was 22.88% and 19.39%, respectively. The mean age of male caregivers was found to be 43.64 ± 13.85 years and for females, it was 44.57 ± 12.42 years; there was no significant age difference in both groups of caregivers. Data were analyzed by pooling both categories of caregivers (male and female) because no significant difference was observed on the experience of problem and strain.

[Table 2] reveals statistically significant difference (P < 0.05) among all diagnostic categories and level of severity of experienced problems among caregivers.
Table 2: Severity of experienced problems and strain of caregivers observed on the Problem Checklist and Strain Scale by diagnostic category of older adults

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Group A (normal group)

Out of 502 caregivers of normal older adults, 143 (28.48%) had no problem, 347 (69.12%) faced mild problem, and only 12 (2.39%) had moderate level of problems. Majority of caregivers of normal older adults faced mild level of problems in caring normal older adults. However, this group was experiencing lower level of problem than other group of caregivers [Table 2], Group A mean ± SD].

Group B (neuropsychiatric group)

Out of 41 caregivers of neuropsychiatrically ill older adults, seven (17.07%) faced no problem, 31 (75.60%) faced mild problem, and only three (7.32%) faced moderate level of problem. However, they revealed more problem than those in Groups A, D, and C [Table 2], Group B mean ± SD].

Group C (organic group)

All the 14 caregivers of cognitively impaired older adults faced mild level of problems in caring of them. The extent of problems in this group was found to be slightly high than that of Groups A and D [Table 2], Group C mean ± SD].

Group D (physically ill group)

Out of 449 caregivers of physically ill older adults, 139 (30.96%) faced no problem, 292 (65.03%) faced mild problems, 16 (3.56%) faced moderate problem, and only two (0.45%) of the caregivers reported severe problem in caring their elderly. Their extent of problem was found to be slightly high than that of Group A caregivers [Table 2], Group D mean ± SD].

Multimorbidity Group E (E + F + G + H)

Comorbid group includes more than one morbidity combined. Out of 157 caregivers of older adults, 15 (9.55%) had no problem of caring them, 113 (71.97%) faced mild problem, 25 (15.92%) faced moderate problem, and 4 (2.55%) faced severe level of problem in caring of older adults having more than one morbidity, i.e., physical, neuropsychiatric, and organic. This group of caregivers were facing the highest degree of problems [Table 2], Group E mean ± SD].

Experienced strain by caregivers

[Table 2] shows that there is a significant difference (P < 0.001) between diagnostic category and strain level of caregivers. Caregivers of neuropsychiatric disorders experienced higher mild strain in comparison to comorbid group, organic group, and physically ill group of older adults.

Out of 502 caregivers of normal group, 158 (31.47%) experienced no strain, 342 (68.13%) experienced mild level of strain, and two (0.04%) experienced moderate level of strain in caring of normal older adults.

Group B

Out of the total 41 caregivers of neuropsychiatrically ill older adults, six (14.63%) experienced no strain, 35 (85.36%) experienced mild level of strain, and no one experienced moderate level of strain in caring neuropsychiatrically ill older adults.

Group C

Out of the total 14 caregivers of cognitively impaired (organic illness) older adults, four (28.57%) experienced no strain and ten (71.42%) experienced mild level of strain in caring older adults having organic illness.

Group D

Out of the total 449 caregivers of physically ill older adults, 150 (33.40%) experienced no strain, 294 (65.48%) experienced mild level of strain, and five (1.11%) experienced moderate level of strain in caring physically ill older adults.

Multi-morbidity Group/ Group E (E + F + G + H)

Out of the total 157 older adults caregivers of this group, 24 (15.28%) experienced no problem, 126 (80.25%) experienced mild level of problem, and seven (4.46%) experienced moderate level of strain in caring older adults having more than one illnesses.

[Table 3] reveals that majority of caregivers are facing mild level of problems on various domains of problem checklist. Majority of the problems are being faced in self-care and functioning (64.8%) followed by emotional (55.3%), behavioral (54.8%), and cognitive (47.3%) domains. However, the load of problems on majority of the caregivers seems to be more than one.
Table 3: Type of problems faced by caregivers of older adults suffering with different disorders on problem checklist

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Behavioral problems

Majority of the caregivers (48.4%) who were having multiple morbidities (Group E) reported mild level of behavioral problems followed by normally aged (Group A: 44.3%) neuropsychiatric disorders (Group B: 34.1%), physical illness (Group D: 32.3%), and organic disorders (Group C: 21.43%).

Moderate level of behavioral problems was reported by 14.65% of those caregivers who were taking care of older adults with multiple morbidities (Group E) followed by 12.19% of caregivers taking care of elderly with neuropsychiatric disorders (Group B), 7.14% of caregivers taking care of elderly with organic disorders (Group C), 3.79% of caregivers taking care of elderly with physical illness (Group D), and 2.19% of caregivers taking care of elderly with normal aging (Group A).

Severe level of behavioral problems was reported by 7.01% of those caregivers who were taking care of older adults with multiple morbidities (Group E). However, a very few caregivers of elderly with normal aging (Group A: n = 3) and neuropsychiatric illness (Group B) and physical illness (Group D) (n = 1 in both) groups reported severe behavioral problems. One of the caregivers of medically ill (Group D) elderly reported profound level of behavioral problems.

Emotional problems

As already described, 55.3% of problem-facing caregivers reported emotional problems. Of these, 62.0% were caregivers of elderly with multiple morbidity, 58.8% and 58.7% were caregivers of elderly with neuropsychiatric and physical morbidities, respectively, 49.9% were caregivers of elderly with normal aging, and 42.9% were of caregivers of elderly with organic group. Of these, majority reported mild level of emotional problems followed by moderate and severe emotional problems. Only two caregivers of multiple morbidity group reported profound level of emotional problems.

Cognitive problems

Comparatively less proportion of caregivers reported cognitive problems (47.3%). In various groups, majority of the caregivers reported mild level of problems. In the group of organic disorders, it was the highest (57.1%) followed by the groups of multiple disorders (47.1%), neuropsychiatric disorder (41.5%), normal aging (37%), and medical illness (26.50%). Moderate (11.46%) and severe (1.27%) levels of cognitive problems were reported most by caregivers of older adults with multiple morbidities.

Self-care and functioning

Majority of the caregivers (64.8%) reported problems in self-care and management. In various groups, majority reported mild problems; the proportion of problems reported group wise was multiple morbidity (79.6%), neuropsychiatric disorder (73.5%), medical illness (63.5%), normal aging (59.9%), and organic (50%). Mild level of problems in self-care and functioning was faced mostly by caregivers of normal aging (56.5%) older adults followed by elderly with neuropsychiatric disorder (53.7%), multiple disorders (52.2%), organic disorder (42.86%), and physical illness (38.53%). Moderate (14.01% and 4.1%), severe (5.09% and 0.9%), and profound (0.63% and 0.2%) level of problems in self-care and functioning were mostly faced by caregivers of older adults with multiple morbidities and medical illness, respectively. In organic group, only one caregiver of the elderly reported severe level of problem in self-care and functioning.

[Table 4] reveals the percentage of “experienced strain” on caregivers by the diagnostic category of their older adults. Overall, [Table 4] summarizes that caregivers of normal older adults were experiencing strain on maximum items (4.1) followed by those in multiple morbidity group (3) and those with organic (2.4), medical illnesses (2.1), and neuropsychiatric (1.7) problems. For majority of caregivers, the level of strain was related to enjoyment of role (46.8%) followed by attention (32%), worry (29.8%), finance (24.6%), coping (18.1%), dangers (17.2%), and depression (15.8%). The least strain was reported for frustration (11.3%), household routine (8.7%), holidays and health (6% for both), sleep (5.8%), and embarrassment (4.3%).
Table 4: Percentages of “experienced strain” on caregivers by diagnostic category of older adults

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In caregivers of medically ill and normal elderly, the reported strain on enjoyment of role was >50% (51.5% and 52.2%, respectively); 80% caregivers of elderly with organic disorders reported worriedness and 50% in the same group reported depression. Strain of attention was reported by 51% of caregivers of multiple morbidity group. Financial strain was majorly reported by those caregivers who were taking care of elderly with multiple morbidities (42.9%).


  Discussion Top


The article intended to describe the problems and strains experienced by the caregivers of healthy and unhealthy urban older adults. Majority of the caregivers were found to be females, which is comparable with previous Asian and Western studies.[1],[25],[26] As the rating of male/female caregivers on the PCLS was more or less similar, grouped analysis has been done. It is observable that caregivers of categories C (organic), E (multiple morbidity), and B (100%, 90%, and 82%, respectively) were experiencing more problems; however, the average score of problems was highest in Group E [Table 2], mean ± SD]. The majority reported mild problems in the areas of behavioral, emotional, cognitive, and/self-care and functioning. It is reported that behavioral and psychological symptoms of dementia (BPSD) upsets the caregiver.[27],[28] Another study also revealed experienced burden in different personal (privacy, etc.) and psychosocial relationships.[1],[8],[9],[10] Caregivers of multiple morbidity group had experienced maximum problems in “self-care and functioning” followed by “behavioral” and “emotional” domains. The load of problems was found to be the highest in this particular group, i.e., 2.9. A latest qualitative study reports that caregivers remain burdened in a multidimensional (health issues, financial burden, time strain, etc.) way, but they took it as a part of their responsibilities and do not want to acknowledge the burden.[29] The neuropsychiatrically ill older adults experienced comparatively more problems than those in Groups A, D, and C, which is comparable to earlier studies.[30] The personal, social, and occupational deterioration in patients' life may reflect negatively on the burden experienced by the caregiver.[31] Caregiver burden was reported higher for dementia caregivers [1] and also for caregivers of mentally ill individuals.[3],[5]

The present study reveals that “cognitive” problems and “self-care and functioning” exert greater impact followed by “emotional” and “behavioral” problems on caregiver's life of older adults with organic disorder. Contraindicating results may be because we have included AD and other kinds of dementias as well as cognitive impairments in a single group. Another study suggests that almost all caregivers have one or other kind of psychosocial problems and they need support at initial as well as later stages of dementia,[32] which is comparable with the present study.

It is also reported that burden of care adversely affects one's well-being;[9] spouses of schizophrenic patients reported greater emotional [33] and significant caregiver burden.[34] Although patient's age, education, and level of functioning are significant predictors of caregiver burden,[33] we could not explore due to limitations of the archived data. The study showed that caregivers of older adults suffering with medical illness had reported more problems related with self-care and functioning and emotional and behavioral domains and comparatively less problem for cognitive domain, which may be due to delay in receiving help with ADL or self-care and that might be contributing to emotional outburst and behavioral problems.

Maximum strain was experienced by the caregivers of older adults suffering from multiple disorders in the areas of “attention,” “finance,” “coping,” “dangers,” and “worry.” Persons having multiple morbidities generally need extra attention and care with much expenditure for arranging proper treatment, diet, and other facilities. The study supports previous findings that the degree of psychopathology affects caregiver burden.[35] Caregivers of older adults with neuropsychiatric disorder reported strain in the area of “worry,” “attention,” “coping,” and “dangers;” it is reported that caregiver's role changes with remission of psychiatric illness, and psychological and social care is required more at the time of remission.[4] Further, it is observed that caregivers of healthy older adults were experiencing less problem and strain in comparison to caregivers of older adults with any kind of health problems. It is reported that there is an objective dysfunction in “orientation,” “concentration,” and “functioning/self-care” of healthily aging older adults.[36] Moreover, this might be a reason that such older adults may be requiring more attention of a caregiver, which may be a precipitating factor of strain, problems, and burden for them.

In exploring differences in the nature and magnitude of problems and strain faced by caregivers of urban older adults, it was found that caregivers of all older adults are experiencing problems and strain. However, caregivers of older adults having more than one health problem felt more problems and strain in comparison to the healthy or single-morbidity groups. The nature and magnitude of problems and strain was different according to the health problems. Livingstone et al.[37] reported that two-third of dementia caregivers develop clinical depression or anxiety, which is in consonance of the results of our study.

For physical illness (Group D), strain in the nature of “finance,” “worry,” and “attention” was prominent, whereas problems in “self-care and functioning” and “behavioral” nature were prominent. For older adults with multiple comorbidities (Group E), problems in “self-care and functioning” and “behavior” were prominent. Strain areas of “attention,” “finance,” “coping,” “dangers,” and worry were prominent for multiple morbidities (Group E). Caregivers of organic group remain strenuous for 80% of time and remain worried, whereas caregivers of normal and medically ill groups experience less strain in performing their role. Nominal proportion of strain was reported in the area of embarrassment, holidays, and health; the overall proportion was reported to be as low as 4%–6%.

The literature review provides some evidence that respite for carers of frail older adults people may have a small positive effect upon carers in terms of burden and mental or physical health. Carers are generally very satisfied with respite. No reliable evidence was found that respite either benefits or adversely affects care recipients, or that it delays entry to residential care. In one of the articles, various aspects of distress and burden along with emotional exhaustion of caregivers of mentally ill caregivers have been very well detailed. Continuous stress of caregiving may adversely affect the physical and mental health of caregivers.


  Implications Top


It will be worth mentioning that most of the studies carried out on caregivers of elderly are generally related to dementia specifically with BPSD. It is reported that behavioral problems exert the greatest impact on caregiver's life of AD.[10] The findings of the study focus on the problems and strains experienced by caregivers of healthy/unhealthy older adults. The study gives indication toward a planned strategy for care of healthy older adults so that it does not become a burden for the caregivers. For such strategies, modules of care including psychosocial educational plans may be helpful. The study indicates that there is a need to develop elderly- and caregiver-friendly intervention plans and caregivers' training programs in the Indian setup to resolve the problems and strain of caregivers and ultimately improve the quality of life and well-being of the elderly. Evidence-based general and specific (disease/disorder) elderly-friendly caregiver modules may be beneficial for the elderly and caregivers both.

Strength and limitations of the study

This is one of the preliminary efforts in which the authors tried to explore and explain the problem and strain of caregivers of older adults with variable health status. Further, the findings give clues regarding the real-world difficulties faced by the caregivers, which may be intervened during imparting care and management plans for the elderly with variable health issues.

However, the study has its limitations. We could not explore the association between the severity of illness and length of caregiving/illness. Further, any of the sociodemographic aspects such as gender, age, education, marital status, family setup, and relationship with patient may disturb the health and well-being of caregivers and/intensify the problems and strain; however, these could not be explored. Physical and mental health status, attitude, and aptitude of the caregivers were also not assessed in the present study. Unfortunately, we could not be able to explore and control the effect of these variables, which may be a major confounder for the results. These may be considered as limitations.

Acknowledgment

The authors express their gratitude to the ICMR, New Delhi, for sponsoring the urban elderly project which provides an opportunity for presenting the archived data of the same. The authors are thankful to the study team including Dr. Aditya Kumar, Dr. S. A. Farooqi, Mrs. Rupali Sharma, Mrs. Reema Sinha, Mrs. Sandhya, Mrs. Latika, and Ms. Reetu, who were responsible for collecting the data and managing the same. We are thankful to the participants who had participated in the study.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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