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 Table of Contents  
ORIGINAL ARTICLE
Year : 2022  |  Volume : 18  |  Issue : 4  |  Page : 177-180

Caregiving for elderly population: A mixed-method study conducted in the urban population of Tamil Nadu


Department of Community Medicine, Sri Manakula Vinayagar Medical College and Hospital, Puducherry, India

Date of Submission20-Sep-2022
Date of Decision05-Oct-2022
Date of Acceptance17-Oct-2022
Date of Web Publication27-Dec-2022

Correspondence Address:
Dr. K Premanandh
Department of Community Medicine, Sri Manakula Vinayagar Medical College and Hospital, Puducherry
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jiag.jiag_53_22

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  Abstract 


Background: Caregiving for elderly individuals is an emerging health issue that affects the quality of life of caregivers. The objective of this study was to explore the difficulties faced by caregivers in providing care to the elderly population. Methodology: This study was conducted using an explanatory mixed-method study design, in which a quantitative component (cross-sectional study) was followed by a qualitative component (in-depth interview). A total of 101 caregivers of the elderly population (with moderate disability level and above) were screened for personal stress using a perceived stress scale. Following quantitative data collection, an in-depth interview was conducted among caregivers selected by purposive sampling using an interview guide to explore the issues faced by caregivers. Results: A total of 384 individuals aged 60 years and above were screened for the level of disability. A total of 101 caregivers who were providing supportive care to elderly people with moderate and severe levels of disability were screened for stress using a perceived stress scale. Around 54% of the caregivers reported high perceived stress and 28% of the caregivers reported moderate stress. In-depth interviews using purposive sampling identified the following themes for caregivers of elderly individuals: frustration about providing continuous care, dealing with personal health problems, feeling anger, and isolation and financial stress. Conclusions: The need for caregiving for the older population is increasing. A significant amount of stress has been reported among caregivers. Frustration about providing continuous care, dealing with personal health problems, and feeling isolation and financial stress were the common challenges reported by the caregivers.

Keywords: Caregiver, disability, stress


How to cite this article:
Premanandh K, Rajalakshmi M, Mohan R. Caregiving for elderly population: A mixed-method study conducted in the urban population of Tamil Nadu. J Indian Acad Geriatr 2022;18:177-80

How to cite this URL:
Premanandh K, Rajalakshmi M, Mohan R. Caregiving for elderly population: A mixed-method study conducted in the urban population of Tamil Nadu. J Indian Acad Geriatr [serial online] 2022 [cited 2023 Feb 8];18:177-80. Available from: http://www.jiag.com/text.asp?2022/18/4/177/365778




  Introduction Top


As the population ages, people living with disability and the need for caregiving also increases. Caregiving for elderly individuals is an emerging health issue that affects the quality of life of caregivers.[1],[2] Care given by family members (informal caregivers) are the backbone of providing long-term care to the elderly population. In general, middle-aged children and spouses provide a majority of this care to older individuals. Responsibilities of caregivers include providing help in daily living activities and managing a disability or chronic disease. Caregiving responsibilities vary and depend on the need of the elderly population. The caregiver's role will become more intensive and complex with an increase in the disability of the recipient.

Caregiving can affect individual health (physical and mental), work ability, and maintaining social relationships. Hence, it is essential to understand the physical and mental health issues faced by caregivers. Studies have shown that caregivers have faced a feeling of hopelessness, guilt, anger, and a negative attitude toward the patient.[3]

Older caregivers face dual jeopardy, while they have to provide supportive caregiving to their spouses, they often themselves suffer from multiple chronic diseases. The social relationships between caregivers and work performance have also been affected by caregiving demands. The quality of the relationship has been affected negatively, between the caregiver and the recipient.[4] A potential effect of demanding caregiving is elderly abuse and mistreatment.[5]

The objective of this study was to explore the difficulties faced by caregivers in providing care to the elderly population.


  Methodology Top


This study was conducted using an explanatory mixed-method study design, in which a quantitative component (cross-sectional study) was followed by a qualitative component (in-depth interview). A cross-sectional study was carried out for 3 months from November 2020 after getting clearance from the institutional ethics committee. A total of 101 primary informal caregivers were included in the study. The sample size was calculated using a 7.3% prevalence of severe stress among caregivers and a 5% absolute precision level.[6] To identify the caregivers who were providing care to the elderly population with disability, individuals aged 60 and above were screened for the level of disability after getting informed consent.

A total of 384 individuals aged 60 and above were screened through a direct interview by trained interviewers using the World Health Organization Disability Assessment Schedule (WHODAS) 2.0 questionnaire[7] through a purposive sampling technique. The WHODAS 2.0 assess disability levels under six domains of life (cognition, mobility, self-care, getting along, life activities, and participation). Individuals were questioned regarding how much difficulty they had in performing a given task and graded each item on a 5-point Likert scale (1–5), where five indicates extreme difficulty in performing a given task and one indicates no difficulty in performing a given task. This is used to determine individuals' disabilities. The disability level was classified as follows: no disability, mild disability, moderate disability, severe disability, and extreme disability.

Caregivers of the elderly population (moderate disability level and above) were screened for personal stress using a perceived stress scale.[8] The perceived stress scale (10-item scale) is a self-reported questionnaire which measures the degree to which a situation is considered as stressful in one's life. The perceived stress scale measures the degree of stress in response to a particular situation on the Likert scale (where 0 = never and 4 = very often). Scores range from 0 to 40 on the perceived stress scale, with a high score indicating higher perceived stress. Scores between 0 and 13 would be considered low stress and score between 14 and 26 would be considered moderate stress. A score above 27 would be considered as high perceived personal stress. Basic social and demographic details of the caregivers were also collected.

Following quantitative data collection, an in-depth interview was conducted among 25 caregivers selected by purposive sampling using an interview guide to explore the issues faced by caregivers. In the in-depth interview, only caregivers of moderate and severely disabled individuals were included.

The following questions were asked of the caregivers: could you share about your caregiving experience at home? What are the challenges you faced in giving care to the elderly? What type of care do you provide to the elderly?

In-depth questions were asked to probe the explanation. The interview was conducted at a place and time convenient to the caregivers after ensuring privacy. The interview was audio recorded after obtaining consent and field notes were taken simultaneously during the interview with the help of a notetaker.

Analysis

Descriptive and inferential data analysis were done using the IBM Corp. Released 2012. IBM SPSS Statistics for Windows, Version 21.0. Armonk, NY: IBM Corp. Chi-squared test (qualitative variables) was used to find the relationships between the variables and perceived stress. The qualitative data collected were analyzed using manual content analysis. After each interview, the audio recordings and the field notes were transcribed and read several times to extract initial codes. The codes were combined according to similarities to form categories. Broad-specific themes were generated from the categories.


  Results Top


A total of 384 individuals aged 60 years and above were screened for the level of disability. [Table 1] shows the disability level among the study population. Around 32.8% of the study population reported no functional limitations. Among the remaining study participants, a mild level (40.9%) of disability was reported by most followed by a moderate level of disability (24.0%). No participant reported an extreme level of disability. In the study population, the domain most affected was conducting household activities, followed by mobility and participation in community life. Getting along with others, self-care, personal hygiene, and eating were the domains least affected among the study population. Among the mobility domain, the majority of the study population reported severe difficulty with prolonged standing (58.4%) and long-distance walking (72.7%).
Table 1: Disability level among the elderly population

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A total of 101 primary informal caregivers who were providing supportive care to elderly people with moderate and severe levels of disability were screened for stress using a perceived stress scale. The mean age of the caregivers was 54.2 years and a majority of them were females (70.3%). The majority of the caregivers were between 40 and 60 years old. Most of the caregivers (50.4%) had completed primary and middle school, whereas around 28% of the caregivers had no formal education. Around 71% of caregivers had insufficient sleep (<8 h in 24 h) in the past 1 week preceding the survey. Around 56% of caregivers had one or more chronic diseases. Only 16% reported having had a routine checkup in the past year.

Around the caregivers, 54% reported high perceived stress scoring 27 and above on the perceived stress scale. Among the caregivers, 28% reported moderate stress and the remaining had low perceived stress. [Table 2] shows an analysis of factors associated with the perceived stress scale. The percentage of females reporting high perceived stress (scoring 27 and above) is more than that of males. Individuals having one or more chronic diseases reported high perceived stress than others. However, both the results were not statistically significant. Caregivers who reported insufficient sleep in the past 7 days preceding the survey had high perceived stress. The result was statistically significant. Similarly, spousal caregivers reported significantly higher perceived stress than care given by children and others.
Table 2: Analysis of factors associated with perceived stress scale

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In-depth interviews using purposive sampling identified the following themes for caregivers of elderly individuals: frustration about providing continuous care, dealing with personal health problems, feeling anger, and isolation and financial stress.

Frustrated about providing continuous care

This includes two subcategories performing several tasks and time-consuming. According to caregivers' experience, they were involved in performing many tasks in providing care to the elderly including personal care activities, providing medicine, household activities, and others. Family caregivers also reported about the consumption of time in providing all those care and feeling overburdened. The daily routine of the caregivers has been changed and they find difficulty in adapting to the situation. The difficulty was expressed in the following quote by one study participant:

All I do throughout the day is take care of him from dawn to dusk… I don't have any time to do anything else. it's very bothersome, I just can't stand it and need a break for myself…

Dealing with personal health problems

Many of the caregivers have their own personal health issues which have escalated due to the physical and mental stress of caregiving. Caregivers also reported interference in their work performance.

Feeling isolated and angry

This includes two subcategories of feeling isolated and anger toward caregiving.

Caregivers often reported feeling a sense of isolation from other family members. Their participation in social life activities has also been affected.

I often feel sad and isolated from others…. the whole burden of caregiving falls on my head…Nowadays I rarely attend any family functions because of this. Thinking about that, I get angry and frustrated.

Financial stress

Caregivers reported a significant amount of financial stress in providing care to the elderly population. The majority of the elderly individuals were not covered by health insurance or by any support system to finance caregiving. Employing maids is one of the major expenditures followed by health expenditures.


  Discussion Top


This article intended to explore the problems faced by caregivers in providing care to elderly individuals.

Family members were the major source of support for older individuals suffering from disease and disability. Caregiving for a family member, who is suffering from disabling chronic illness, can cause significant physical and psychological strain.

The physical and mental impact of caregiving depends on the type of care provided and the disability level of the older individual. Around 20% of the caregivers in our study were more than 60 years old. Prioritizing between dealing with their personal health issues and caregiving role will be more challenging.

In our study, 68% of the caregivers were individual spouses, whereas the remaining 32% of caregivers were given by middle-aged children and others. The majority of caregivers in our study were 60 years old. Despite having their health issues, they have to provide continuous care to others. Increased levels of stress and depressive symptoms have been reported consistently as the age of the caregiver increases.[9] Around 70% of caregivers in our study were females. In comparison with male caregivers, female caregivers were more likely to suffer from the emotional stress of caregiving with increased reporting of stress, depression, and, other symptoms.[10]

Informal caregiving of the elderly is usually given by three distinct groups of caregivers: spousal caregivers, care given by older children, and others. The care given by a spouse has different commitments and capabilities than adult children. Due to the same age group, spouses are at increased risk of physical and emotional strain. They were also more likely to be suffering from chronic diseases and some level of disability.[11]

Spousal caregivers were more likely to feel that caregiving is an obligation. Pinquart et al. reported that 60% of spousal caregivers had no choice in assuming the caregiver role. Studies have also shown that spousal caregivers were at increased risk of perceived stress and suffer from more health problems.[12] In our study, high perceived stress (62%) was reported among spousal caregivers than in others.

Caregivers who experience high perceived stress due to caregiving exhibit more symptoms of depression and poor self-care.[13] The effect of caregiving on the physical and mental health of caregiving has been documented in previous studies.[8],[9],[10],[11]

Due to the increasing demand for caregiving and the lack of other supportive measures, caregivers feel isolated and often withdraw themselves from other social relations.

The mental stress of the caregivers is often neglected which affects not only their quality of life but also elderly care. With an increase in the demand for caregiving, the quality of the relationship between caregiver and recipient is also affected. Monin and Schulz reported low relationship satisfaction among spousal caregivers who provide care to adults with multiple chronic conditions.[14]

A potential effect of increased perceived stress among caregivers is elderly abuse. Beach and Schulz reported a higher rate of abuse among older adults with an increased level of disability and family members were responsible for the majority of them.[4]


  Conclusions Top


The need for caregiving for the older population is increasing. A significant amount of stress has been reported among caregivers. Frustration about providing continuous care, dealing with personal health problems, and feeling isolation and financial stress were the common challenges reported by the caregivers.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

1.
Talley RC, Crews JE. Framing the public health of caregiving. Am J Public Health 2007;97:224-8.  Back to cited text no. 1
    
2.
Hoffman D, Zucker H. A call to preventive action by health care providers and policy makers to support caregivers. Prev Chronic Dis 2016;13:E96.  Back to cited text no. 2
    
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Thrush A, Hyder AA. The neglected burden of caregiving in low – And middle-income countries. Disabil Health J 2014;7:262-72.  Back to cited text no. 3
    
4.
Beach SR, Schulz R. Family caregiver factors associated with unmet needs for care of older adults. J Am Geriatr Soc 2017;65:560-6.  Back to cited text no. 4
    
5.
Schulz R, Beach SR, Czaja SJ, Martire LM, Monin JK. Family caregiving for older adults. Annu Rev Psychol 2020;71:635-59.  Back to cited text no. 5
    
6.
Siew CW, Ho HK, Cheong SK, Tan BY, Lim FS, Emmanuel SC. Caregiver stress in activities of daily living-dependent elderly aged more than 65 years. Ann Acad Med Singap 2003;32:S69-71.  Back to cited text no. 6
    
7.
Ustun, TB , Kostanjesek, N, Chatterji, S, Rehm, J & World Health Organization. (2010). Measuring health and disability: manual for WHO Disability Assessment Schedule (WHODAS 2.0) Geneva, Switzerland: WHO; 2010. Available from URL: https://apps.who.int/iris/handle/10665/43974. [Last accessed on 2022 May 10].  Back to cited text no. 7
    
8.
Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav 1983;24:385-96.  Back to cited text no. 8
    
9.
Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs 2008;108:23-7.  Back to cited text no. 9
    
10.
Family Caregiver Alliance. 2011. Available from: URL http://www. circlecenterads.info/documents/FCA Print_SelectedCaregiv pdf. [Last accessed on 2022 May 10].  Back to cited text no. 10
    
11.
Schulz R, Beach SR, Cook TB, Martire LM, Tomlinson JM, Monin JK. Predictors and consequences of perceived lack of choice in becoming an informal caregiver. Aging Ment Health 2012;16:712-21.  Back to cited text no. 11
    
12.
Pinquart M, Sörensen S. Spouses, adult children, and children-in-law as caregivers of older adults: A meta-analytic comparison. Psychol Aging 2011;26:1-14.  Back to cited text no. 12
    
13.
Burton LC, Zdaniuk B, Schulz R, Jackson S, Hirsch C. Transitions in spousal caregiving. Gerontologist 2003;43:230-41.  Back to cited text no. 13
    
14.
Monin JK, Schulz R. Interpersonal effects of suffering in older adult caregiving relationships. Psychol Aging 2009;24:681-95.  Back to cited text no. 14
    



 
 
    Tables

  [Table 1], [Table 2]



 

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