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Abstract

Background:

Primary caregivers of HIV-infected patients face enormous burden, which if inappropriately coped, leads to psychiatric morbidity. Little is known of what role caregiver’s age and gender play in this.

Purpose:

To assess the socio-demographic profile and the influence of age and gender on coping strategies and psychiatric morbidity.

Procedure:

Sixty caregivers were assessed on a semistructured sociodemographic proforma, a coping checklist, and the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV; [SCID-I]).

Main Findings:

Majority of the carers were young, equally from both genders, and used the same number of coping strategies which increased with age. “Avoidance” was preferred by males and older carers. Youngsters had maximum psychiatric morbidity, majority of the depressed were females, while 90% of nicotine dependants were males.

Conclusion:

Gender, but not age, decided the style of coping and extent of psychiatric morbidity hence gender-specific interventions will improve the quality of life of the carers and their wards.

Keywords

HIV/AIDS primary caregiver coping styles psychiatric morbidity age and gender

Introduction

HIV infections and AIDS are widely prevalent in India, with the maximum numbers being reported from southern and north eastern states.¹ In the Indian context, caregiving for a chronically ill individual is mostly home based, by their families,² and specifically by an identified primary caregiver,^3,4 which traditionally happens to be a woman^5–7 who finds this more burdening than the male carers.⁸ Caring for individuals living with AIDS is compounded by issues like the transmission of infection, disclosure fears, associated stigma, and rejection which compels the caregivers to isolate themselves,⁹ thereby cutting off valuable supports. This subjects them to immense psychological distress,¹⁰ which if not managed well with adequate coping strategies, makes them vulnerable to a plethora of psychiatric disorders.

The primary caregivers of HIV-infected patients are forced to be “on call” 24 hours a day and are required to fulfill multiple and sometimes conflicting roles,¹¹ which have a tremendous adverse effect on their psychological well-being.^12,13 Most often than not it is the elderly parents and the dependent, young children who end up performing this role, many times unsuited for their age.¹⁴ Hence among all the characteristics of the caregiver, their age and gender appear to have a significant influence on the outcome of this complex interplay.

Given the magnitude of services provided and the sacrifice made by the caregivers, the adverse consequences of caregiving have emerged as a serious public health concern.^15,16 Depression, adjustment disorders, and anxiety disorders are commonly prevalent among caregivers using faulty coping methods.^17

–20 This not only affects their overall well being but also influences the quality of care provided to their wards. An early identification of susceptible caregivers and appropriate intervention would improve the coping style and in turn reduce their psychiatric morbidity, improving the care they render. There is a dearth of Indian studies which have addressed these issues, in the light of which the current study was planned.

Measures

Sampling and Recruitment

As the aim of the study was to assess the coping patterns and psychiatric morbidity in the primary caregiver, a cross-sectional study was designed, and consecutive patients attending the antiretroviral treatment (ART) center of a tertiary care general hospital located in the city of Bangalore, India, during a period of 1 year from March 2009 to March 2010 were recruited. After obtaining clearance and approval from the ethics committee of the institute, primary caregivers of 72 patients diagnosed with HIV/AIDS, aged above 18 years were included in the study. A written consent was obtained from both the caregiver and the patient. All caregivers who were required to care for more than one chronically ill individual, were excluded from the current study. Four caregivers and 2 patients refused to give consent, while 6 of the participants were unable to complete the study, hence the results are based on the data of 60 participants who completed the study.

A primary caregiver was one who fulfilled any one of the following requirements, is the parent/spouse of the patient, has the most frequent contact with the patient, is the collateral in patient’s treatment, or is the emergency contact.²¹ Their sociodemographic data were collected using a semistructured proforma and their coping strategies were assessed by administering the “Active behavioral, Active cognitive and Avoidance coping strategies,” by Billings and Moos—32 items scale,²² a coping checklist employed in more than 950 research studies world over. Following this, their psychiatric status was assessed using the clinical version of Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV; [SCID-I]).²³ All the assessments were conducted by professionally qualified psychiatrists with extensive experience in the concerned field.

Statistical Analysis

Statistical methods

Descriptive statistical analysis has been carried out in the present study. Results on continuous measurements are presented on mean ± standard deviation ([SD]; Min-Max) and results on categorical measurements are presented as number (%). Chi-square test and Student t test (2-tailed, independent) were used to derive the association between categorical and continuous variables, respectively.

Statistical software

Statistical software, namely SAS 9.2, SPSS 15.0, Stata 10.1, MedCalc 9.0.1, Systat 12.0, and R environment ver.2.11.1, was used for the analysis of the data.

Results

Sociodemographic Details

In the current study, the average age of the caregiver was 31.2 (±6.9) years, with both genders being represented equally; 91.7% of them came from the city with an average of 11.3 (±4.6) years of formal education. All 60 carers were employed with 61.7% of them being the primary breadwinners of their families. The majority were married (85%) with 46.2% for more than 10 years. Spouses (61.7%) were the major primary caregivers, each caring for an average of 2.4 (±1.9) years.

Effect of Age and Gender on Coping and Psychiatric Morbidity

To study the caregiver population, a large number of coping strategies were employed, among which behavioral coping strategies contributed most significantly to the total score on the Coping Checklist, followed by the cognitive strategies and avoidance strategies (Table 1). All age groups used an average of 45.08 (±7.82) coping strategies, distributed equally among the subcategories. Despite both genders having used the same number of coping strategies, avoidance (6.29 ± 2.77) as a coping strategy was most preferred by the male caregivers (P = .040) and by those aged more than 40 years (6.50 ± 1.90; Table 2).

Table 1.

Influence of Cognitive, Behavioral, and Avoidance Strategies on Total Coping Checklist (CCL) Score.^a

	Regression Coefficient	Standard Error	Standardized β	P Value
CCL-Cognitive	0.704	0.152	0.395	< .001**
CCL-Behavioral	0.950	0.124	0.670	< .001**
CCL-Avoidance	0.833	0.289	0.252	< .001**

^a Cognitive, behavioral, and avoidance are significant to total CCL, with highest influence of behavioral (β = .670) followed by cognitive strategies (β = .395).

Table 2.

Influence of Age and Gender on the Coping Checklist (CCL) Scores.

CCL	Age in Years			P Value	Gender			P Value
CCL	18-30	31-40	>40	P Value	Total (n = 60)	Male (n = 30)	Female (n = 30)	P Value
CCL-Total	44.20 ± 7.00	45.75 ± 9.42	46.40 ± 7.07	.674	45.08 ± 7.82	45.13 ± 7.38	45.03 ± 8.37	.961
CCL-Cognitive	16.87 ± 4.45	16.95 ± 5.31	17.70 ± 3.06	.879	17.03 ± 4.51	17.20 ± 4.16	16.87 ± 4.9	.777
CCL-Behavioral	22.30 ± 5.39	22.30 ± 4.97	21.20 ± 6.99	.849	22.12 ± 5.47	22.03 ± 3.99	22.20 ± 6.7	.907
CCL-Avoidance	4.89 ± 1.99	6.26 ± 2.86	6.50 ± 1.90	.066	5.63 ± 2.38	6.29 ± 2.77	5.00 ± 1.75	.040*

All age groups had a high prevalence of psychiatric morbidity, those aged between 18 and 30 years had the maximum number of disorders, with 76.7% having major depression. Major depression was noticed in 80% of the female caregivers, while 88.9% of the nicotine users were men, both statistically significant. Dysthymia and anxiety disorders were prevalent equally among both the genders while 58.5% of those depressed were women (Table 3).

Table 3.

Influence of Age and Gender on Psychiatric Morbidity of the Caregivers.

SCID	Age in Years			P Value	Gender			P Value
SCID	18-30 (n = 30)	31-40 (n = 20)	>40 (n = 10)	P Value	Total (n = 60)	Male (n = 30)	Female (n = 30)	P Value
Major depression	23 (76.7%)	13 (65%)	5 (50%)	.259	41 (68.3%)	17 (56.7%)	24 (80%)	.052+
Dysthymia	6 (20%)	5 (25%)	5 (50%)	.182	16 (26.7%)	9 (30%)	7 (23.3%)	.559
Substance dependence—nicotine	3 (10%)	4 (20%)	2 (20%)	.546	9 (15%)	8 (26.7%)	1 (3.3%)	.026*
GAD	13 (43.3%)	10 (50%)	3 (30%)	.647	26 (43.3%)	12 (40%)	14 (46.7%)	.602
Anxiety of unknown origin	13 (43.3%)	8 (40%)	2 (20%)	.582	23 (38.3%)	11 (36.7%)	12 (40%)	.791

Abbreviations: SCID, Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition; GAD, generalized anxiety disorder.

Discussion

Caring for an individual living with HIV/AIDS subjects the primary caregiver not only to tremendous caregiver burden²⁴ but also to immense caregiver stress²⁵ and strain.²⁶ The manner in which the caregiver copes with these issues governs not only his or her physical, but also his or her psychological, well-being. An excessive reliance on inappropriate coping strategies renders them susceptible to a plethora of psychiatric illnesses. The primary caregiver’s coping style and their predilection to develop psychiatric morbidity is influenced significantly by their gender and the stage in life they are (their age), among other factors. A good understanding of the shortcomings in the coping styles and the prevalence of psychiatric morbidity among the primary caregivers would enable the mental health professionals to develop age-appropriate and gender-specific interventions to enhance positive coping, hence reduce their psychiatric morbidity. This will go a long way in improving the quality of care rendered to the HIV-infected individual. In this context, the present study was carried out in a general hospital with an ART center.

Sociodemographic Profile of the Primary Caregiver

In the current study, the average caregivers belonged to both the genders, aged about 31 years, and hailed from an urban background. With around 11 years of formal education, they were all employed and were the primary breadwinners of their families. The primary caregiver was mostly the spouse of the affected individual, married for more than 10 years and caring for about 2½ years.

The influence of such a profile on the caregiver’s coping mechanisms could be demonstrated easily as all the caregivers on an average employed a large number of coping strategies. Among the different coping strategies used, behavioral coping strategies contributed most significantly to the total score on the Coping Checklist, followed by the cognitive strategies, with avoidance strategies being used the least (Table 1). The relatively younger age (average of 31 years) of the caregiver along with the fact of caring for a shorter time (2 years) may make behavioral coping strategies his or her first choice.

Influence of Age and Gender on the Coping Pattern

As the age of the caregivers advanced, their coping strategies also increased (from 4.89 ± 1.99 to 6.50 ± 1.90), a statistically significant change (Table 2). Though this was a healthy change, it did not translate positively as they preferred more of avoidance coping strategies. This trend could be due to the fact that the older primary caregivers with multiple stressors are either unable to employ other coping strategies or have exhausted other coping strategies. The preference of avoidance is noted in other studies too,²⁷ though mostly by the male caregivers.²⁸ In keeping with this global trend, the male caregivers in this study also employed avoidance strategies more often (6.29 ± 2.77), a finding which is statistically significant. In the Indian social context, as the elements of the avoidance subscale (alcohol consumption and smoking) are more permissible for the male gender, they probably employ this strategy more often.

Influence of Age and Gender on the Psychiatric Morbidity

The prevalence of psychiatric morbidity among the primary caregivers was phenomenal, as all of them had one or more diagnosable illness, compared with the 20% prevalence in the general population,²⁹ this high rate directly implicates caregiving as the prime factor for this phenomenon (Table 3). In our study, major depression (68.3%) was the single most commonly diagnosed disorder, a finding replicating previous studies.^17,18,30,31 Anxiety spectrum disorders (generalized anxiety disorder [GAD], panic disorder, and anxiety of unknown origin) were seen in 81.6% of the primary caregivers. Sixteen of the study participants had dysthymia, while 9 were nicotine dependent. Surprisingly none of the other diagnostic categories in DSM-IV were represented in the study sample.

In our study population, the majority (56.09%) of the depressed were young (18-30 years), this age group accounted for the maximum number of disorders. Caregiving not only induced stress but also advanced the onset of depression. According to the age of the carer, a trend could be identified in the distribution of major depression and anxiety disorders; as age advanced, the prevalence of both disorders reduced, being maximum in the young (76.7% and 86.6%, respectively) and the least in those aged >40 years (50% each). While ageing reduced depression and anxiety, it increased dysthymia from 20% in the young to 50% in those aged >40 years.

Depression has been found to be more common in women than in men.³² In keeping with this finding, the female primary caregivers in our study received a diagnosis of depression (80%) more often than the male caregivers (56.7%). Dysthymia was seen in 23% of women and in 30% of men, the prevalence higher than that in the general population.³³ A larger population of the caregivers in our study had the dual diagnosis of both major depression and dysthymia, indicating the severity of the stress of caregiving. While most current information shows women are diagnosed more often with anxiety and GAD,³⁴ in our study it was equal in both genders as caregiving is equally stressful for both the genders. Caregivers in this study had a high percentage of nicotine dependence, with 91% of them being men. The preponderance in men resorting to tobacco consumption in our country is likely to be a result of its social acceptance and as a form of stress release.³⁵

Analyses of the influence of gender on psychopathology led to an identifiable pattern, with female caregivers having major depression while the male caregivers were nicotine dependent, both statistically significant. Dysthymia was diagnosed more in the men, while anxiety disorders were present equally in both the genders.

Several limitations have to be acknowledged in this study. First, the sample was relatively small and homogeneous as well as a convenience sampling, limiting the generalizability of the findings. Second, the stages of illness in the index patients and caregiver’s own physical health status were not controlled, which might have influenced their coping styles and psychiatric morbidity. Finally, as it was a cross-sectional study, the direct causal effect of caregiving on their psychiatry morbidity cannot be established. As this sector in HIV/AIDS care is relatively novel and unexplored, any information obtained from this special population would be valuable in planning and implementing appropriate public issue policies.

Conclusion

Caregiving for an HIV-infected patient is stressful, and how one copes with this will decide whether or not he or she can succeed in handling this huge responsibility. Caregiver’s age and gender should receive due importance as they have a significant effect on one’s ability to cope with stress. From the current study, we conclude that the younger caregivers used the least number of coping strategies while suffering maximally. Older carers used more coping strategies, though avoidance mostly, and it reduced psychiatric morbidity. Men preferred avoidance while women preferred behavioral coping styles, and this probably explains the high rate of nicotine dependence in men and major depression in women. It is the gender of the caregiver and not the age that has significant influence not only on their coping strategies but also on their psychiatric morbidity. Hence all routine HIV/AIDS treatment protocols should encompass both the index patient and their primary caregivers. Supportive psychotherapeutic interventions primarily targeting the female caregivers would help them to cope better and reduce the psychological stress they face. This will go a long way in reducing their psychiatric morbidity at the same time improving the quality of care they render to their HIV/AIDS wards.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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