The Indian Journal of Occupational Therapy

ORIGINAL ARTICLE
Year
: 2020  |  Volume : 52  |  Issue : 4  |  Page : 139--143

Analysis of burden on family caregivers of hospitalized patients with psychiatric illness: An observational, analytical, cross-sectional study


Pratibha M Vaidya, Heena N Patel 
 Occupational Therapy School and Centre, T. N. Medical College and BYL Nair Ch. Hospital, Mumbai, Maharashtra, India

Correspondence Address:
Pratibha M Vaidya
Occupational Therapy School and Centre, T. N. Medical College and BYL Nair Ch. Hospital, Mumbai, Maharashtra
India

Abstract

Background: The caregiver's burden refers to a people's emotional response to the change in their life roles and the increased responsibilities that they need to deal with when they are expected to care for an ill person. The burden on a family can be due to a multitude of reasons which include increased workload, type of caregiving tasks that need to be performed, the amount of time consumed performing these tasks, the personal sacrifices that need to be made to accommodate these, disruption of family routine, and stigmatization by society. The caregiver's gender, age, level of education, employment status, family history of mental illness, family type, etc., are few of the factors considered to evaluate the level of burden on the caregiver in this study. Objective: The objective of this study was to evaluate/gauge the level of burden of family caregivers of admitted psychiatric patients and determine the influence of various factors on this burden. Study Design: An observational, analytical, cross-sectional study was conducted. Methods: One hundred and fourteen family caregivers of age ≥18 years, who have been caring for hospitalized patients with psychiatric illness for more than 6 months, were included in the study. Demographic data gathered included age, gender, family history of mental illness, type of family, relationship with the patient, educational qualifications, and employment status. The caregivers were interviewed using the Zarit Burden Interview to evaluate their level of burden, which consists of 22 questions. The caregivers were asked to rate each question on a scale of 0–4 in ascending order of occurrence. Results: The level of burden in 42% (n = 48) of the family caregivers was moderate, and in 34% (n = 36) of the caregivers, it was severe. Seventy-seven percent of the caregivers from nuclear families (n = 89) experienced moderate-to-severe burden as compared to 68% of those from joint family (n = 25). Younger caregivers of age 18–40 years experienced moderate-to-severe stress. Sixty-seven percent of the caregivers were females (n = 76) and 33% were males (n = 38) of a total of 114 caregivers, and the level of burden was more in males. Employed caregivers had a higher burden than those who were unemployed. Conclusion: The level of burden ranges from “moderate” to “severe” among the family caregivers of hospitalized patients with psychiatric illness, wherein younger, employed caregivers from nuclear families without a family history of mental illness were significantly more burdened.



How to cite this article:
Vaidya PM, Patel HN. Analysis of burden on family caregivers of hospitalized patients with psychiatric illness: An observational, analytical, cross-sectional study.Indian J Occup Ther 2020;52:139-143


How to cite this URL:
Vaidya PM, Patel HN. Analysis of burden on family caregivers of hospitalized patients with psychiatric illness: An observational, analytical, cross-sectional study. Indian J Occup Ther [serial online] 2020 [cited 2021 Dec 7 ];52:139-143
Available from: http://www.ijotonweb.org/text.asp?2020/52/4/139/314216


Full Text

 Introduction



A caregiver is a person who looks after the needs or problems of a person who has long-term illness or injury. A family caregiver is any family member, partner, or friend who regularly provides support or care to a person who has a significant or persistent health problem or loss of autonomy. The family caregiver may have the responsibility of helping the person with his or her daily self-care activities as well as tasks such as doing shopping, managing finance, cleaning the house, preparing meals, and medical management. The caregiver is also concerned regarding the overall well-being and safety and provides emotional support to the person he is caring for. The family caregiver experiences stress due to this constant psychological and physical involvement.[1] Caring for a family member with psychiatric illness itself increases the demands on the caregiver. The family routine is disrupted, and family members may face considerable sacrifice and added stigmatization.[2]

The caregiver's burden refers to people's emotional response to change in their life roles that occur and the increased demands when they are into the patient care. The role of family in the rehabilitation process is vital and enabling. Family support and encouragement motivates the patient to pursue difficult rehabilitation tasks. Burden on family caregivers can be due to increased workload, type of care task performed, and amount of time spent performing these task for the patient.[3] The effects of caregiving are wide ranging and depend on each individual. Caregivers are at increased risk for adverse effects on their well-being in almost every aspect of their lives, be it their health, quality of life, and financial security.[2] The factors such as social isolation, lack of knowledge about the condition, and limited interpersonal and coping skills may influence and worsen the degree of burden. Help from family, good coping strategies, and help from society can reduce the level of burden.

Physical competence may make it difficult to provide care for elderly caregivers.[4] Gender bias with expected role of caregiving from females with other social roles is also one of the factors which may influence the level of burden in female caregivers.[4],[5],[6] Education and employment may influence the easy for the caregiver to manage medicines, finance, and acceptance of psychiatric patients in society and family. Type of family will affect the amount of social support the caregiver receives from other family members.[4] Hence, age, education, employment, family history, and family type were some of the factors considered for the presence of the burden in this study.

The objectives of the study were to assess the level of burden on family caregivers of hospitalized patients with mental/psychiatric illness and to assess the influence of social and demographic factors on the level of burden in family caregivers.

 Methods



An observational, noninterventional, analytical, cross-sectional study was conducted in a tertiary care hospital on 114 family caregivers of the hospitalized patients with mental/psychiatric illness. The study was conducted adhering to the principles of “Declaration of Helsinki” guidelines, and written informed consent was sought from the family caregivers. Waiver form was submitted and approved by the institutional ethics committee. Patients were diagnosed as per the International Classification of Diseases, Tenth Revision, Clinical Modification guidelines. Majority of caregivers were caring for those of patients who were diagnosed as schizophrenia.

Caregivers aged more than 18 years and who were staying with the patient since the onset of illness with not <6 months were included in the study. Demographic data recorded were age, gender, family history of illness, type of family, relationship of caregiver, employment, and education of the family caregiver. The caregivers were subjected to the Zarit Burden Interview (ZBI) questionnaire which was applied as a self-administered questionnaire in English language, to those who could understand it, and to the rest of the caregivers, it was administered by interview technique in which the interviewer translated the questionnaire into the vernacular (Hindi and Marathi) language in which both the patient and the interviewer were well versed. The questionnaire was translated to Hindi and Marathi by an expert. The vernacular versions of both Hindi and Marathi languages were back translated to English language. The original English version and back-translated version were conceptually the same.

Zarit Burden Interview

The ZBI[7] consists of 22 items, rated on a five-point Likert scale that ranges from 0 (never) to 4 (nearly always) with the sum of scores ranging between 0 and 88. Higher scores indicate greater burden. The ZBI was developed as a unidimensional measure of burden. Questions reflect how people sometimes feel when they are taking care of another person. After each question, how often they felt that way was circled as never, rarely, sometimes, frequently, or nearly always. There are no right or wrong answers. The scale is interpreted as 0–20 (minimal burden), 21–40 (mild burden), 41–60 (moderate burden), and 61–88 (severe burden). The caregivers rated each question from 0 (never) to 4 (nearly always). The total score was calculated for adding the score for all questions.

 Results



The minimum score obtained by the caregiver was 6 and maximum score was 78. The average score of burden was 50.24. Forty-four percent of the clients had stress level below average and 56% had more than average stress level [Table 1]. The burden of care was moderate in the age group of 18–25, whereas in the older age groups, more than 75% of the caregivers had moderate-to-severe burden [Table 2]a. The number of female caregivers was 76 (66%) and male caregivers was 38 (34%). Thirty-eight percent of the females had moderate level of stress as compared to 21% of the men [Table 2]b.{Table 1}{Table 2}

Out of 114 caregivers, 8 (7%), 21 (18%), 48 (42%), 37 (32%) had minimal, mild, moderate, and severe levels of burden, respectively [Table 3]. Out of 114, 70 (66%) were parents, 27 (24%) were spouse, 7 (06%) were children, and only 5 (04%) were siblings. Sixty-three percent of the patients came from a family with history of mental illness and 37% of them were from a family without mental illness [Table 4]. Fifty percent of the caregivers had moderate level and 33% had severe burden, whereas only 33% and 31% of the caregivers who were unemployed had moderate and severe burden, respectively [Table 5]. Forty-two percent and 43% of the caregivers had severe burden when the duration of illness was <5 years and 5–15 years, respectively [Table 6].{Table 3}{Table 4}{Table 5}{Table 6}

 Discussion



There is a change in physical, psychological, financial, and social life of the caregiver. Caregivers try to balance caregiving with their other activities, such as work, family, and leisure, and may find it difficult to focus on the positive aspects of caregiving. They often experience an increased sense of burden while meeting these demands. The role of caregiving can have negative experiences such as stigma, worry, shame, and guilt and positive aspects such as social support. Thus, it is important to focus not only on the patients but also on the well-being of the caregivers.[1]

The scale used to evaluate the level of burden is ZBI. The ZBI consists of 22 items rated on a five-point Likert scale that ranges from 0 (never) to 4 (nearly always) with the sum of scores ranging between 0 and 88. Higher scores indicate greater burden.[7]

One hundred and fourteen caregivers were included in this study; out of these, 38 were males and 76 were females. The age of these caregivers spread from minimum of 18 years and maximum of 70 years.

The range for the level of stress measured in the caregivers was from minimum 6 to maximum 78. The average of this range for 114 caregivers was 50.24. Fifty caregivers (44%) were in the range less than or equal to the average and 64 caregivers (56%) were in the range greater than the average [Table 1].

The age of the client ranged from 18 years to 78 years. 54.38% were within the interquartile range and 100% were within the 1.5 rule of IQR. Due to wide range difference, four groups were derived for the age, to assess the level of burden.

Considering the age, moderate level of burden was seen in the age group of 18–26 years whereas moderate-to-severe burden was present in the older age group [Table 2] and [Table 2]a. This can be attributed to lack of physical competence and vulnerability while providing care to the psychiatric patients.[4],[8] The other reason could be the relationship of the caregiver with the patient. The patient may be the child or the grandchild which affects the emotions of the older caregiver.

The number of female caregivers was 76 (66%) and male caregivers was 38 (34%). Considering the gender, 38% of the females had moderate level of stress as compared to 21% of the men. Our society and cultural background still expects caring role on females in terms of family responsibilities.[8],[9] Male caregivers had higher burden as compared to females in a study conducted by Oshodi et al.[6] [Table 2] and [Table 2]a.

The severity of burden was graded on the scale as minimum, mild, moderate, and severe. Out of 114 caregivers, 8 (7%), 21 (18%), 48 (42%), and 37 (32%) had minimal, mild, moderate, and severe levels of burden, respectively. Thus, a total of 84% of the caregivers had burden ranging from moderate to severe [Table 3].

Seventy-eight caregivers were from nuclear family type whereas 22 were from joint family. On comparing the burden in nuclear family with that of joint family, majority of the caregivers from nuclear family, i.e., 44%, had moderate and 33% had severe level of burden [Table 3]. This can be attributed to the fact that the duration of caretaking maybe more for that particular caregiver due to lack of social support. It can be even true that the person may have difficulties performing his other life roles of work and leisure. This may even affect his financial status, leading to higher level of burden.[4],[10]

The caregivers were either parents, spouse, children, or siblings of the patient. Out of 114, 75 (66%) were parents, 27 (24%) were spouse, 7 (06%) were children, and only 5 (04%) were siblings. There was very less difference in level of stress depending on the relationship of caregivers. Each of the family members either experienced moderate or severe burden while caring for the psychiatry patient [Table 4].

Sixty-three percent of the patients came from a family with history of mental illness and only 36% of them were from a family without mental illness. The level of burden was not influenced by the presence of family history. All the caregivers equally had moderate-to-severe burden [Table 4].

Considering whether the caregiver was employed or unemployed, 53% of them were employed and needed to attain the goal of managing work and patient, and 47% of the caregivers were unemployed. Fifty percent of the caregivers had moderate level and 33% had severe burden, whereas only 33% and 31% of the caregivers who were unemployed had moderate and severe burden, respectively. This can be attributed to the fact that employed caregivers were financially stable, but they needed to manage their time for two equally important tasks of caring and managing the finance and other life roles. The unemployed caregivers were not torn between the task of caregiving and finance. Caregivers who are unemployed or have low incomes may experience more distress because they may have fewer resources to meet care demands. Some of the employed caregivers were from nuclear families, and thus, there was no one to share their responsibilities [Table 5]. Similar finding was seen in a study done by Jan Shah et al. 2010 and Kim et al. 2012.[4],[8]

The level of education had no effect on burden of caregivers. Twenty-two percent of the caregivers were illiterate and 78% of the caregivers were literate. Educational values did not influence the stress level, whether well-educated or otherwise caregivers had emotional bonding with the patient. A family caregiver had pride in fulfilling responsibilities and satisfaction of caring for the relative.[4],[9]

Burden of caregivers' experience for those patients having duration of illness <5 years was more than when duration was more than 15 years. Forty-two percent, 43%, and 15% of the caregivers were of patients with <5 years, 5–15 years, and more than 15 years, respectively.

This can be related to the presence of acute symptoms in the patients with less duration.[4] Eighty-two percent of the caregivers were dwelling in urban set up as compared to 18% who were from rural set up [Table 6]. Moderate level of burden was experienced in both the groups.

The study reveals that some amount of stress always persist in caregivers of psychiatric inpatients. Proper counseling and adequate coping strategies as per the needs of the caregiver will enhance their well-being and would aid to improve their role toward the patient.

Limitations

Duration of care given in terms of hours, by the caregiver to the patients, was not considered.

Suggestions

Apart from social factors, psychological factors such as depressions and anxiety in caregivers also need to be evaluated.

 Conclusion



Moderate-to-severe level of burden was experienced by the family caregivers of the hospitalized patients with mental/psychiatric illness. Factors which influenced the level of burden were age, gender, employment, and family type. The level of burden was higher in younger age, males more than females, caregivers who were employed, and nuclear family. Relationship of the caregiver, education, duration of illness, and family history of mental illness did not have impact on the level of burden.

Financial Support and Sponsorship

Nil.

Conflicts of Interest

There are no conflicts of interest.

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