Factors Associated with Caregiving Burden of Family Caregivers of Older Adults with Disability, Kathmandu, Nepal

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Because of limited health facilities and support; the family caregivers may experience burden. Objective: To identify factors associated with caregiving burden of family caregivers of older adults with disability. Methods: Descriptive cross-sectional survey was conducted by using non-probability convenient sampling technique from 430 family caregivers of older adults with disability residing in Tarakeshwor and Gokarneshwor Municipalities of Kathmandu. Data was collected through in personal interview by using pretested Nepali version of structured interview questionnaire consisting socio-demographic characteristics of older adults and their family caregivers, care provision related variables, social support questionnaire and 22-item Zarit Burden questionnaire. SPSS version 25 was used for data analysis especially descriptive statistics (frequency, percentage and mean as well as standard deviation), inferential statistics (Logistic regression model: univariate and multivariate) were used to identify factors associated with caregiving burden. Results: In this study, 65.3% of family caregivers had caregiving burden in which statistically significant association was depicted with COPD, hypertension, paralysis, urinary and gastrointestinal problems, health problems, psychological status, impaired ADLs and IADLs of older adults and also occupation and economic status, residency, types and size of family, perceived extra stress, health status, duration of care, daily caring hours, and sleep time of family caregivers. The predictors of burden were older adults with hypertension [AOR:1.96 (CI: 1.12-3.43; p=0.019)]; gastrointestinal problems [AOR: 3.33 (CI: 1.35-8.21; p=0.009)]; complete impairment [AOR: 0.37 (CI: 0.16-0.87; p=0.022)] and family caregivers with low economic status [AOR: 1.79 (CI: 1.05-3.05; p=0.031)]; caring for 3-35 months [AOR 0.60 (CI: 0.36-0.98; p=0.043)]; long caring hours (≥8) [ AOR 2.84 (CI: 1.14-7.06; p=0.025)]. Conclusion: As two third of family caregivers feel burden, the predictors of burden are hypertension, gastrointestinal problems and impairment in ADLs of the older adults and low economic status, caring for 3-35 months and long caring hours (≥8) of the family caregivers. The concerned authority of these two municipalities need to address the economic need of family caregivers and local level health institutions need to develop different activities for supporting family caregivers of older adults with disabilities through home visiting. Trial registration: Not applicable Nursing Caregiving burden Family caregivers Older adults with disability Background Ageing is a global phenomenon that results in an increasing population of older adults with disability and chronic illness that are becoming public health problems( 1 ). Nepal is also rapidly growing with more than 3.8% annual growth of people aged 75 years and above( 2 ). Not only, the prevalence of disability is increased with age (40% at aged 60 and, 75% at aged 80)( 3 ) but also its severity is increased with age (20% at aged 60 years and 50% at aged 80 and above)( 4 ). The risk of disability is increased because of increasing prevalence of chronic diseases and injuries with aging( 2 ). In Nepal, 80% of outpatient contact for medical follow-up and treatment in health institutions( 5 ) are utilized by people with chronic diseases. The provision of home-based care for older adults with disability by family caregivers is becoming a challenge due to shortage of young people which may be because of decreasing in the total fertility rate( 6 ), declining the potential support ratio( 7 ), reducing family size as consequences youth migration( 2 ) and limited health care facilities( 6 ) as well as a lack of formal support( 6 ). Family caregivers are the informal workforce for providing care to family members who are disabled and the most difficult part of health care system( 8 – 11 ) for providing support in ADLs and managing symptoms of chronic conditions( 10 ). Caregiving can affect the family caregivers employment status, educational prospects, finances and social life( 12 ). Caring for an older adult with a disability is a highly stressful experience (physical, psychosocial or financial hardships) known as caregiving burden( 13 , 14 ). Thus, a prolonged sense of burden may lead to emotional stress( 15 ), psychiatric problems( 15 – 18 ), poor health( 14 – 19 ), worsening health related quality of life( 14 , 15 , 19 , 20 ), financial problems( 15 – 17 ), compromised immunity( 14 , 19 ), mortality( 14 , 19 ), social isolation( 14 , 19 ),, deteriorate work participation( 20 ), burnout( 21 )or influence decisions to institutionalize care recipients( 15 , 21 ). Hence, this study was conducted to identify the factors associated with caregiving burden of family caregivers having older adults with disability. Methods Study design and participants A quantitative, descriptive cross-sectional survey design was used. The population of this study was all the family caregivers of older adults aged 60 years and above with a disability residing in Tarakeshwor and Gokarneshwor Municipalities of Kathmandu District, having the highest population density in Nepal. The inclusion criteria of participants in this study were family caregivers of older adults currently providing care in at least one ADLs( 23 ) and four IADLs( 24 ) for more than one month. The calculation of the sample size was based on the following assumptions: prevalence of burden 50%, at 95% confidence level at least ± 5% precision by using Cochran formula ( 25 ) as following: ((1.96) 2 (0.5) (0.5)) / (0.05) 2 = 385, considering an attrition rate of 11.5%, the sample size was 430 participants by using non-probability, convenient sampling technique. After getting ethical approval from Intitutional Review Board of Xiangya School of Nursing and Nepal Health Research Council, written permission from authority of both municipalities. Data collection The study was carried out by appropriately prepared and trained interviewers who conducted direct, pen-andpaper interviews using pretested Nepalese version structured interview questionnaire at the participants’ places of residence. The questionnaire consisted of sociodemographic characteristics of both older adult (age, gender, marital status, family type, number of living children, status of governmental support, type and duration of disability, average required time per day for care assistance, and, history of chronic diseases) and family caregiver (age, gender, marital status, educational background, current occupation, any social role, family income sources with estimated yearly expenditure, relationship with older adult, position, number of family members, caring responsibility of under-five child, provision of care for other family members or relatives and any current stressful conditions); checklist for assessing impairment status on ADLs and IADLs developed by the WGBH Educational Foundation and Massachusetts Institute of Technology in 2008 (26) , Social Support Rating Scale (SSRS) developed by Xiao in 1995 (27) for assessing perceived social support of family caregivers and Nepalese version of Zarit Burden Interview (ZBI) questionnaire (28) consisting of 22 questions in a 5-point Likert scale. Data was collected from 1st January, 2022 to 31st March 2022 using a pretested Nepalese version of interview schedule. Statistical analysis The researcher checked the data daily, coded, recorded, and entered in statistical package for the social science (SPSS); version 25.0 software. A database had been formed mentioning name, label, value and criteria of the variables. Then, the data were entered and analyzed using descriptive statistics such as frequency, percentage, mean, and standard deviation; and inferential statistics such as Pearson’s correlation coefficient ( p ), univariate, multivariate logistic regression tests to measure the relationship of dependent and independent variables. For statistical analyses, a p -value less than 0.05 was considered significant. Results Characteristics of studied population The findings revealed that 44.9% of the older adults had 1–2 activities impairment followed by 3–5 activities impairment (42.8%), and complete impairment in ADLs (12.3%) respectively. Likewise, 54.4% of them had complete and 45.6% had partial impairment in IADLs. Similarly, 74.7% of older adults had three or more health problems and 20.0% had memory impairment. This study also found that the mean age of family caregivers was 45.92 ± 14.05 years, 83.5% and 88.1% family caregivers were female and married and living with a spouse. Only 43.0% of them were in earning occupations or receiving financial support from government, and 50.4% had sufficient income for one year or more. Further, 58.6% of them felt extra stress besides care provision. All of them perceived a moderate level of social support. The mean duration of care provision was 4.43 ± 3.93 years ranging from 3 months to 30 years, 19.5% of them cared for ≥ 8 hours per day, 37.7% slept < 6 hours and 18.4% had no resting time in a day. Only 27.9% of the family caregivers had one or more health problems. Burden status and possible factors associated with caregiving burden A multivariate logistic regression was applied for the significant variables after using univariate analysis. While calculating model fitness, the chi-square is highly significant (chi-square = 112.578, df = 20, p = 0.000) in Omnibus tests; on measuring Hosmer and Lemeshow goodness of fit {chi-square = 3.727, df = 8, p = 0.881 (> 0.5)} that suggests the model is a good fit to the data. Likewise, the total accuracy of this model in classification table was 73.3% which is nearest to 80% as the prediction model is corrected up to 80%. The value of Nagelkerke’s R square is 31.8% of the variation in the outcome that this model is significant. Table 1 shows that 34.7% of family caregivers perceived no burden or mild burden, while 57.9%, 6.5% and 0.9% had moderate caregiving burden, moderate to severe and severe burden respectively with its mean score 24.73 ± 10.14. Table 2 shows that there was statistically significant association between diseases of older adults COPD (0.017), hypertension (0.000), paralysis (0.000), urinary problems (0.041), gastrointestinal problems (0.001), their health problems category (0.000), psychological status (0.003), impairment level of ADLs (0.000) and impairment status of IADLs (0.008) with caregiving burden as p-values of each is < 0.05. Table 3 shows statistically significant association between caregivers’ occupation (p = 0.015), economic status (p = 0.047), residency types (0.006), family types (p = 0.001), family size (p = 0.038), perceived extra stress (p = 0.000), health status (p = 0.000), duration of care provision (p = 0.042), hours of daily care provision (p = 0.000), and sleep duration (p = 0.000) with burden as p-value of each was < 0.05. Predictors of caregiving burden Table 4 shows the univariate and multivariate analysis of older adults’ related variables of burden. The adjusted odds of hypertensive older adults was 1.96 (CI: 1.12–3.43; p = 0.019) as compared to non-hypertensive and older adults having GI problems was 3.33 (CI: 1.35–8.21; p = 0.009) as compared to without GI problem. Similarly, the older adults with 3–5 ADLs impairment and complete impairment were 1.30 (CI: 0.71–2.37; P = 0.388) and 0.37 (CI: 0.16–0.87; p = 0.022) respectively as compared to impairment of 1–2 ADLs. Table 5 shows the univariate and multivariate analysis of family caregivers’ related variables with caregiving burden. The economic status was sufficient for less than 1 year with adjusted odds 1.79 (CI: 1.05–3.05; p = 0.031) as compared with sufficient for equal or more than one years. Similarly, the caring duration for 3–35 months with adjusted odds 0.60 (CI: 0.36–0.98; p = 0.043) as compared to caring duration for 3 years or above and the average daily caring hours for 8 or more with adjusted odds 2.84 (CI: 1.14–7.06; p = 0.025) as compared to daily caring hours less than 8 hours as in all p-values were less than 0.05. Discussion This study showed that 74.7% older adults had three or more physical problems and 20.0% had memory problems. Likewise, 60.9%, 26.5% and 12.6% of them had 1–2, 3–5 impairment and complete impairment in ADLs respectively, while a study done by Khanal and Chalise [29] found that 30% of older adults had at least one ADLs impairment. As found in this study, 83.5% were female family caregivers which was consistent with studies reports of Khanal & Chalise [29], Sajeev & John [30], Baysan & Mandiracioglu [31]and Abdul et al, [32] as female were 80.7%, 75%, 81.5% and 66.4% respectively. Current study found 27.9% of family caregivers had one or more health problems which was less than a study of Abdul et al [32] as 52.8% had some health problems. Current findings showed mean duration of care provided was 4.43 (± 3.93) years which was less than the study of Khanal & Chalise [29] that was 5.18 (± 3.51) years. The average caring time of this study was 37.31 hours per week which was similar with the findings of Brinda et al, [20] as 38.6 hours/week. The mean score of burden of family caregivers in current study was 24.73 ± 10.14 which was lower than the studies of Sajeev & John [30]; Gok Matin, Karadas & Mustafa Cankurtaran, [33]; Baysan & Mandiracioglu [31]; and Naing, May & Aung [34] as 36.4 ± 14.3; 37.59 ± 18.20; 31.95 ± 13.33 and 45.75 ± 16.79 respectively; and was higher than studies conducted by Abdul, et al [32] and Khanal & Chalise[29] as 18.5 ± 13.6 and 12.89 ± 5.7 respectively. The systematic review done by Loo, Yan & Low [35] found that the prevalence of burden was 23.0%-59.2%. These difference may be because of inclusion criteria and socio-cultural variances. Current study revealed that 34.7% of family caregivers had no or mild care burden while 57.9%, 6.5% and 0.9% had moderate burden, moderate to severe and severe burden respectively, which was lower than the findings of Tuttle, Griffiths & Kaunnil [36]; Sajeev & John [30]; Loureiro, et al [37], and Chandana et al [38] in which 18.8% had no care burden, 43.5% had low-moderate, 30.4% had moderate to high and 7.2% had high burden; 43.33% had mild to moderate burden, 35.83% had moderate to severe and 15% had little or no burden; 61.5% had mild to moderate, 23.1% had moderate to severe and 15.4% had no burden; and 20% had little to no burden and 64.0% had mild to moderate, 14.0% had moderate to severe and 2.0% had severe burden respectively. In contrast this, a study conducted by Khanal & Chalise[29] found that only 12.0% of family members had expressed burden. This difference may be because of inclusion criteria. Factors associated with caregiving burdens Current study depicted that the older adults’ related possible factors of burden were having numbers of health problems (0.000), with their types {COPD/asthma (0.017), hypertension (0.000), paralysis (0.000), urinary problems (0.041), gastrointestinal problems (0.001)} and their psychological status (0.003). Another possible factor of burden in this study was level of ADLs (0.000) which was consistent with the study of Tuttle, Griffiths, & Kaunnil [36] and Abdul, et al [32] as ADL status of the care recipients (p = 0.003) and their functional independence (P < 0.001). Current study also showed that economic category (p = 0.047) also a possible factor of burden which was supported by findings of Abdul, et al [32] as p = 0.034; Baysan & Mandiracioglu [31]. Current study depicted that health status (p = 0.000) of family caregivers was the possible factor of burden which was consistent with the studies of Baysan & Mandiracioglu [31] as physical health problems (p < 0.001) and of Abdul et al [32] found that even presence of chronic diseases (p = 0.006). Current study revealed that another possible factor of care burden was daily caring time (p = 0.000) which was similar with the finding of Gok Metin, Karadas, Balci, Cankurtaran Zehra [33]. This finding was also consistent with the study of Tuttle, Griffiths, & Kaunnil [36] as the caring hours (p = .017) was another possible factor of caregiving burden. Current study finding depicted that age group of family caregivers was not the possible factor of caregiving burden, but the studies conducted by Naing, May & Aung[34] and Tuttle, Griffiths, & Kaunnil [36] depicted as age group as possible factor of burden as p = 0.008 and p = 0.000 respectively. Other possible factors of caregiving burden was gender (p = 0.023) (Abdul et al) [32]; home-sharing (p = 0.006), and spending time during the day (p = 0.009) (Baysan & Mandiracioglu) [31] these results were contradictory with current study. Likewise, a study done by Lee, Hung, Kim, Chunmi [39] identified as factor influencing subjective burden was spouse of the older adults (t = 2.34, p = .020), a study done by Tuttle, Griffiths, & Kaunnil [36] found that the relationship to the care recipients was the possible factor of caregiving burden as p-value 0.009 which was contradictory to the findings of current study. In current study, the educational level of family caregivers was not the possible factor of caregiving burden, while different studies done by Tuttle, Griffiths, & Kaunnil [36] and by Gok Metin, Karadas, Balci, Cankurtaran Zehra[33]found that their education level (p = 0.002) was also a possible factors of burden as p –value less than 0.05. Predictors of Caregiving Burdens This study found that older adults with hypertension as its adjusted odds 1.96 (CI: 1.12–3.43; p = 0.09), with GI problems as its adjusted odds 3.33 (CI: 1.35–8.21; p = 0.009) which was inconsistence with the study done by Sabzwari, et al [40], as the stroke was the predictor of caregiving burden as adjusted odds {3.03 (1.34–6.86)}. Likewise, this study also revealed that the older adults with complete impairment was 0.37 (CI: 0.16–0.87; p = 0.022). This finding was similar with the study done by Abdul, et al [32] in which their functional independence {–1.1 (–1.6, − 0.6); P < 0.001} was the predicators of caregiving burden. This study also found that economic status sufficient for less than 1 year with adjusted odds 1.79 (CI: 1.05–3.05; p = 0.031) as compared with sufficient for equal or more than one years; the caring duration for 3–35 months with adjusted odds 0.60 (CI: 0.36–0.98; p = 0.043) as compared to 3 year or above and the average daily caring hours for 8 or more with adjusted odds 2.84 (CI: 1.14–7.06; p = 0.025) as compared to daily caring hours less than 8 hours. Limitations This study also has some limitations. As this study follow descriptive cross-sectional survey, it does not allow the researchers to make strict cause effect interpretations of the associations between caregiving burden and related independent variables and its determinants. A longitudinal study is recommended to establish such associations. Due to resource and time constraints, the study sample was drawn from only 2 municipalities of Kathmandu District; as such the sample may not fully represent all the family caregivers of older adults with disability of Kathmandu District. Another limitation of this study was few of family caregivers were denying the researcher for visiting their older relatives with disability because of pandemic of COVID 19. Conclusions This study showed that nearly two third of family caregivers had caregiving burden. The older adults’ related factors of burden are COPD, hypertension, paralysis, urinary and gastrointestinal problems, psychological status, ADLs and IADLs impairment status. Similarly, the family caregivers’ related factors are occupation and economic status, residency, family types and size, perceived health status, and perceived extra stress including duration of care, daily caring time and sleep duration. The predictors of caregiving burden are hypertension, gastrointestinal problems, complete impairment in ADLs of the older adults and low economic status, continuous caring for 3–35 months and daily caring hours (≥ 8) of the family caregivers. The concerned authority of these two municipalities need to address the economic need of family caregivers and local level health institutions need to develop different activities for supporting family caregivers of older adults with disabilities through home visiting. Abbreviations ADL: Activities of daily living; IADL: Instrumental Activities of Daily Living Scale; CI: Confidence Interval; COPD: Chronic Obstructive Pulmonary Disease; HTN: Hypertension, GI: Gastrointestinal, ZBI: Zarit Burden Interview Declarations Acknowledgements Researcher expressed her gratitude for Xiangya School of Nursing, Central South University China and Nepal Health Research Council for providing her ethical permission for conducting this study. She also expressed acknowledgement for authorities of Tarakeshwor and Gokarneshwor municipalities. In addition, she expressed her gratitude to Bibhav Adhikari, Prem Prasad Panta and Nabina Paneru for data entry and statistical analysis. She expressed her gratitude to all family caregivers of older adults who voluntarily participated in this study. Authors’ contributions Study concept and design: Raj Devi Adhikari Ghimire, Prof Dr Siyuan Tang. Data acquisition: Raj Devi Adhikari Ghimire. Data analysis: Raj Devi Adhikari Ghimire, Prof. Dr Siyuan Tang, Lec. Amrita Shrestha. Interpretation of data: all authors. Drafting of the manuscript: Raj Devi Adhikari Ghimire, and Amrita Shrestha. Critical revision of the manuscript: all authors. Raj Devi Adhikari had full access to all data in this study and takes responsibility for the integrity of data and the accuracy of data analysis. The final manuscript has been read and approved by all named authors. Funding This research did not receive grant from any funding agency in the public or commercial or not-for-profit sectors. Availability of data and materials The datasets used and/or analyzed during the current study are available from Raj Devi Adhikari Ghimire at [email protected] on reasonable request. https://drive.google.com/file/d/1mteuuGgF508NXBpCb-udT4ltLFqH3eyb/view?usp=sharing Competing interests The authors declare that they have no competing interests. Ethics approval and consent to participate Written informed consent and permission for interviews and publication were received from all study participants and their main adult caregivers. Approved from Nepal Health Research Council in 2 nd Sep 2021, approved NHRC Number was 455-202-PhD. 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Rev Esc Enferm USP 47(5):1129–1136 SciELO Brazil Chandana N, James M, Kokilavani C, Padmasree P, Soniya N, Tarugu J et al (2024) Caregiver burden of the elderly in a selected urban community, Chittoor district, Andhra Pradesh. Int J Community Med Public Health 11:815–822 ijcmph Lee HS, Kim C (2018) Factors Affecting Family Caregivers’ Burden and Depression in Home-based Long-Term Care Service under the Long-Term Care Insurance System ISSN 1225–9594 (Print) / ISSN 2288–4203 (Online) Vol. 29 No. 4, 530–538, December https://doi.org/10.12799/jkachn.2018.29.4.530 . RCPHN Sabzwari S, Badini AM, Fatmi Z, Jamali T, Shah S (2016) Burden and associated factors for caregivers of the elderly in a developing country. East Mediterr Health J 22(6):394–403 PMID: 27686980. PubMed Tables Tables 1 to 5 are available in the Supplementary Files section. Additional Declarations The authors declare no competing interests. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6222070","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":428501841,"identity":"3d4e7692-d675-4a5d-9ec6-ea72ca5a2f1f","order_by":0,"name":"Raj Devi Adhikari Ghimire","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABE0lEQVRIie3RMUvDQBTA8edSl5NzkldSzFe4EGgtCH6VJ4F0OSdBMohmSpbinOCX0MU5t+hyH+BAkLg4FWmX0kHEM4JDaQxugvcn00t+3OUOwOX6mxEC2AckqBSAcYDeL0k/7SbN9w3ZsgRE1UFGefVsFtkB8PxEqeL8aRCa6KWeJ+DzvWojGWiKxmWGgPqV1M39KRuaeBQUGoLymlo2RbHHtN2bkULVPbKEht5OBiQeWwivY+/NEr8h78TCYrL8maBdBRIE8UluM2ICZccqWEfjqSWBnglVXhFDPTvrFxrb/4XLY7MSF7D/IMPFdElHPJ/c4Tw59Lm3mdi7a15cpt+DXfo6l/a2q7UBXx+4XC7Xf+8DsH9fIdSwYnIAAAAASUVORK5CYII=","orcid":"https://orcid.org/0000-0002-8948-0770","institution":"Tribhuvan University","correspondingAuthor":true,"prefix":"","firstName":"Raj","middleName":"Devi Adhikari","lastName":"Ghimire","suffix":""},{"id":428501842,"identity":"5d447432-b323-4ddb-96e9-9bed01406e19","order_by":1,"name":"Professor Dr. Siyuan Tang","email":"","orcid":"","institution":"Xiangya School of Nursing","correspondingAuthor":false,"prefix":"","firstName":"Professor","middleName":"Dr. Siyuan","lastName":"Tang","suffix":""},{"id":428501843,"identity":"98a375e1-ad1d-4f31-aa8f-07765fbd3c16","order_by":2,"name":"Amrita Shrestha","email":"","orcid":"","institution":"Tribhuvan University","correspondingAuthor":false,"prefix":"","firstName":"Amrita","middleName":"","lastName":"Shrestha","suffix":""}],"badges":[],"createdAt":"2025-03-13 17:37:50","currentVersionCode":1,"declarations":{"humanSubjects":true,"vertebrateSubjects":false,"conflictsOfInterestStatement":false,"humanSubjectEthicalGuidelines":true,"humanSubjectConsent":true,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":false,"vertebrateSubjectEthicalGuidelines":false},"doi":"10.21203/rs.3.rs-6222070/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6222070/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":78635420,"identity":"f483610b-d78a-498c-9931-42b097655e6c","added_by":"auto","created_at":"2025-03-17 05:03:13","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":608182,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6222070/v1/9acfdbc0-72aa-4d07-bf08-8387b98158ae.pdf"},{"id":78635028,"identity":"25666a53-b433-4c1f-bf9f-df0d373017b6","added_by":"auto","created_at":"2025-03-17 04:55:09","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":30234,"visible":true,"origin":"","legend":"","description":"","filename":"TABLEs.docx","url":"https://assets-eu.researchsquare.com/files/rs-6222070/v1/0e1a00bc8d57a89408e0918b.docx"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003e\u003cstrong\u003eFactors Associated with Caregiving Burden of Family Caregivers of Older Adults with Disability, Kathmandu, Nepal\u003c/strong\u003e\u003c/p\u003e","fulltext":[{"header":"Background","content":"\u003cp\u003eAgeing is a global phenomenon that results in an increasing population of older adults with disability and chronic illness that are becoming public health problems(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Nepal is also rapidly growing with more than 3.8% annual growth of people aged 75 years and above(\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Not only, the prevalence of disability is increased with age (40% at aged 60 and, 75% at aged 80)(\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) but also its severity is increased with age (20% at aged 60 years and 50% at aged 80 and above)(\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). The risk of disability is increased because of increasing prevalence of chronic diseases and injuries with aging(\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). In Nepal, 80% of outpatient contact for medical follow-up and treatment in health institutions(\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) are utilized by people with chronic diseases. The provision of home-based care for older adults with disability by family caregivers is becoming a challenge due to shortage of young people which may be because of decreasing in the total fertility rate(\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e), declining the potential support ratio(\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e), reducing family size as consequences youth migration(\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) and limited health care facilities(\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e) as well as a lack of formal support(\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eFamily caregivers are the informal workforce for providing care to family members who are disabled and the most difficult part of health care system(\u003cspan additionalcitationids=\"CR9 CR10\" citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) for providing support in ADLs and managing symptoms of chronic conditions(\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Caregiving can affect the family caregivers employment status, educational prospects, finances and social life(\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). Caring for an older adult with a disability is a highly stressful experience (physical, psychosocial or financial hardships) known as caregiving burden(\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). Thus, a prolonged sense of burden may lead to emotional stress(\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e), psychiatric problems(\u003cspan additionalcitationids=\"CR16 CR17\" citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e), poor health(\u003cspan additionalcitationids=\"CR15 CR16 CR17 CR18\" citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e), worsening health related quality of life(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e), financial problems(\u003cspan additionalcitationids=\"CR16\" citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e), compromised immunity(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e), mortality(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e), social isolation(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e),, deteriorate work participation(\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e), burnout(\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e)or influence decisions to institutionalize care recipients(\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Hence, this study was conducted to identify the factors associated with caregiving burden of family caregivers having older adults with disability.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design and participants\u003c/h2\u003e \u003cp\u003eA quantitative, descriptive cross-sectional survey design was used. The population of this study was all the family caregivers of older adults aged 60 years and above with a disability residing in Tarakeshwor and Gokarneshwor Municipalities of Kathmandu District, having the highest population density in Nepal. The inclusion criteria of participants in this study were family caregivers of older adults currently providing care in at least one ADLs(\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e) and four IADLs(\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) for more than one month. The calculation of the sample size was based on the following assumptions: prevalence of burden 50%, at 95% confidence level at least\u0026thinsp;\u0026plusmn;\u0026thinsp;5% precision by using Cochran formula (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e) as following: ((1.96)\u003csup\u003e2\u003c/sup\u003e (0.5) (0.5)) / (0.05)\u003csup\u003e2\u003c/sup\u003e = 385, considering an attrition rate of 11.5%, the sample size was 430 participants by using non-probability, convenient sampling technique. After getting ethical approval from Intitutional Review Board of Xiangya School of Nursing and Nepal Health Research Council, written permission from authority of both municipalities.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003eThe study was carried out by appropriately prepared and trained interviewers who conducted direct, pen-andpaper interviews using pretested Nepalese version structured interview questionnaire at the participants\u0026rsquo; places of residence. The questionnaire consisted of sociodemographic characteristics of both older adult (age, gender, marital status, family type, number of living children, status of governmental support, type and duration of disability, average required time per day for care assistance, and, history of chronic diseases) and family caregiver (age, gender, marital status, educational background, current occupation, any social role, family income sources with estimated yearly expenditure, relationship with older adult, position, number of family members, caring responsibility of under-five child, provision of care for other family members or relatives and any current stressful conditions); checklist for assessing impairment status on ADLs and IADLs developed by the WGBH Educational Foundation and Massachusetts Institute of Technology in 2008\u003csup\u003e(26)\u003c/sup\u003e, Social Support Rating Scale (SSRS) developed by Xiao in 1995\u003csup\u003e(27)\u003c/sup\u003e for assessing perceived social support of family caregivers and Nepalese version of Zarit Burden Interview (ZBI) questionnaire\u003csup\u003e(28)\u003c/sup\u003e consisting of 22 questions in a 5-point Likert scale. Data was collected from 1st January, 2022 to 31st March 2022 using a pretested Nepalese version of interview schedule.\u003c/p\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eStatistical analysis\u003c/h2\u003e \u003cp\u003eThe researcher checked the data daily, coded, recorded, and entered in statistical package for the social science (SPSS); version 25.0 software. A database had been formed mentioning name, label, value and criteria of the variables. Then, the data were entered and analyzed using descriptive statistics such as frequency, percentage, mean, and standard deviation; and inferential statistics such as Pearson\u0026rsquo;s correlation coefficient (\u003cem\u003ep\u003c/em\u003e), univariate, multivariate logistic regression tests to measure the relationship of dependent and independent variables. For statistical analyses, a \u003cem\u003ep\u003c/em\u003e-value less than 0.05 was considered significant.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e\n \u003ch2\u003eCharacteristics of studied population\u003c/h2\u003e\n \u003cp\u003eThe findings revealed that 44.9% of the older adults had 1\u0026ndash;2 activities impairment followed by 3\u0026ndash;5 activities impairment (42.8%), and complete impairment in ADLs (12.3%) respectively. Likewise, 54.4% of them had complete and 45.6% had partial impairment in IADLs. Similarly, 74.7% of older adults had three or more health problems and 20.0% had memory impairment. This study also found that the mean age of family caregivers was 45.92\u0026thinsp;\u0026plusmn;\u0026thinsp;14.05 years, 83.5% and 88.1% family caregivers were female and married and living with a spouse. Only 43.0% of them were in earning occupations or receiving financial support from government, and 50.4% had sufficient income for one year or more. Further, 58.6% of them felt extra stress besides care provision. All of them perceived a moderate level of social support. The mean duration of care provision was 4.43\u0026thinsp;\u0026plusmn;\u0026thinsp;3.93 years ranging from 3 months to 30 years, 19.5% of them cared for \u0026ge;\u0026thinsp;8 hours per day, 37.7% slept\u0026thinsp;\u003cstrong\u003e\u0026lt;\u003c/strong\u003e\u0026thinsp;6 hours and 18.4% had no resting time in a day. Only 27.9% of the family caregivers had one or more health problems.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\n \u003ch2\u003eBurden status and possible factors associated with caregiving burden\u003c/h2\u003e\n \u003cp\u003eA multivariate logistic regression was applied for the significant variables after using univariate analysis. While calculating model fitness, the chi-square is highly significant (chi-square\u0026thinsp;=\u0026thinsp;112.578, df\u0026thinsp;=\u0026thinsp;20, p\u0026thinsp;=\u0026thinsp;0.000) in Omnibus tests; on measuring Hosmer and Lemeshow goodness of fit {chi-square\u0026thinsp;=\u0026thinsp;3.727, df\u0026thinsp;=\u0026thinsp;8, p\u0026thinsp;=\u0026thinsp;0.881 (\u0026gt;\u0026thinsp;0.5)} that suggests the model is a good fit to the data. Likewise, the total accuracy of this model in classification table was 73.3% which is nearest to 80% as the prediction model is corrected up to 80%. The value of Nagelkerke\u0026rsquo;s R square is 31.8% of the variation in the outcome that this model is significant.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eTable\u0026nbsp;1\u003c/strong\u003e shows that 34.7% of family caregivers perceived no burden or mild burden, while 57.9%, 6.5% and 0.9% had moderate caregiving burden, moderate to severe and severe burden respectively with its mean score 24.73\u0026thinsp;\u0026plusmn;\u0026thinsp;10.14. Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e shows that there was statistically significant association between diseases of older adults COPD (0.017), hypertension (0.000), paralysis (0.000), urinary problems (0.041), gastrointestinal problems (0.001), their health problems category (0.000), psychological status (0.003), impairment level of ADLs (0.000) and impairment status of IADLs (0.008) with caregiving burden as p-values of each is \u0026lt;\u0026thinsp;0.05. \u003cstrong\u003eTable\u0026nbsp;3\u003c/strong\u003e shows statistically significant association between caregivers\u0026rsquo; occupation (p\u0026thinsp;=\u0026thinsp;0.015), economic status (p\u0026thinsp;=\u0026thinsp;0.047), residency types (0.006), family types (p\u0026thinsp;=\u0026thinsp;0.001), family size (p\u0026thinsp;=\u0026thinsp;0.038), perceived extra stress (p\u0026thinsp;=\u0026thinsp;0.000), health status (p\u0026thinsp;=\u0026thinsp;0.000), duration of care provision (p\u0026thinsp;=\u0026thinsp;0.042), hours of daily care provision (p\u0026thinsp;=\u0026thinsp;0.000), and sleep duration (p\u0026thinsp;=\u0026thinsp;0.000) with burden as p-value of each was \u0026lt;\u0026thinsp;0.05.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec16\" class=\"Section2\"\u003e\n \u003ch2\u003ePredictors of caregiving burden\u003c/h2\u003e\n \u003cp\u003e\u003cstrong\u003eTable\u0026nbsp;4\u003c/strong\u003e shows the univariate and multivariate analysis of older adults\u0026rsquo; related variables of burden. The adjusted odds of hypertensive older adults was 1.96 (CI: 1.12\u0026ndash;3.43; p\u0026thinsp;=\u0026thinsp;0.019) as compared to non-hypertensive and older adults having GI problems was 3.33 (CI: 1.35\u0026ndash;8.21; p\u0026thinsp;=\u0026thinsp;0.009) as compared to without GI problem. Similarly, the older adults with 3\u0026ndash;5 ADLs impairment and complete impairment were 1.30 (CI: 0.71\u0026ndash;2.37; P\u0026thinsp;=\u0026thinsp;0.388) and 0.37 (CI: 0.16\u0026ndash;0.87; p\u0026thinsp;=\u0026thinsp;0.022) respectively as compared to impairment of 1\u0026ndash;2 ADLs. Table \u003cspan class=\"InternalRef\"\u003e5\u003c/span\u003e shows the univariate and multivariate analysis of family caregivers\u0026rsquo; related variables with caregiving burden. The economic status was sufficient for less than 1 year with adjusted odds 1.79 (CI: 1.05\u0026ndash;3.05; p\u0026thinsp;=\u0026thinsp;0.031) as compared with sufficient for equal or more than one years. Similarly, the caring duration for 3\u0026ndash;35 months with adjusted odds 0.60 (CI: 0.36\u0026ndash;0.98; p\u0026thinsp;=\u0026thinsp;0.043) as compared to caring duration for 3 years or above and the average daily caring hours for 8 or more with adjusted odds 2.84 (CI: 1.14\u0026ndash;7.06; p\u0026thinsp;=\u0026thinsp;0.025) as compared to daily caring hours less than 8 hours as in all p-values were less than 0.05.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study showed that 74.7% older adults had three or more physical problems and 20.0% had memory problems. Likewise, 60.9%, 26.5% and 12.6% of them had 1\u0026ndash;2, 3\u0026ndash;5 impairment and complete impairment in ADLs respectively, while a study done by Khanal and Chalise [29] found that 30% of older adults had at least one ADLs impairment. As found in this study, 83.5% were female family caregivers which was consistent with studies reports of Khanal \u0026amp; Chalise [29], Sajeev \u0026amp; John [30], Baysan \u0026amp; Mandiracioglu [31]and Abdul et al, [32] as female were 80.7%, 75%, 81.5% and 66.4% respectively. Current study found 27.9% of family caregivers had one or more health problems which was less than a study of Abdul et al [32] as 52.8% had some health problems. Current findings showed mean duration of care provided was 4.43 (\u0026plusmn;\u0026thinsp;3.93) years which was less than the study of Khanal \u0026amp; Chalise [29] that was 5.18 (\u0026plusmn;\u0026thinsp;3.51) years. The average caring time of this study was 37.31 hours per week which was similar with the findings of Brinda et al, [20] as 38.6 hours/week.\u003c/p\u003e \u003cp\u003eThe mean score of burden of family caregivers in current study was 24.73\u0026thinsp;\u0026plusmn;\u0026thinsp;10.14 which was lower than the studies of Sajeev \u0026amp; John [30]; Gok Matin, Karadas \u0026amp; Mustafa Cankurtaran, [33]; Baysan \u0026amp; Mandiracioglu [31]; and Naing, May \u0026amp; Aung [34] as 36.4\u0026thinsp;\u0026plusmn;\u0026thinsp;14.3; 37.59\u0026thinsp;\u0026plusmn;\u0026thinsp;18.20; 31.95\u0026thinsp;\u0026plusmn;\u0026thinsp;13.33 and 45.75\u0026thinsp;\u0026plusmn;\u0026thinsp;16.79 respectively; and was higher than studies conducted by Abdul, et al [32] and Khanal \u0026amp; Chalise[29] as 18.5\u0026thinsp;\u0026plusmn;\u0026thinsp;13.6 and 12.89\u0026thinsp;\u0026plusmn;\u0026thinsp;5.7 respectively. The systematic review done by Loo, Yan \u0026amp; Low [35] found that the prevalence of burden was 23.0%-59.2%. These difference may be because of inclusion criteria and socio-cultural variances.\u003c/p\u003e \u003cp\u003eCurrent study revealed that 34.7% of family caregivers had no or mild care burden while 57.9%, 6.5% and 0.9% had moderate burden, moderate to severe and severe burden respectively, which was lower than the findings of Tuttle, Griffiths \u0026amp; Kaunnil [36]; Sajeev \u0026amp; John [30]; Loureiro, et al [37], and Chandana et al [38] in which 18.8% had no care burden, 43.5% had low-moderate, 30.4% had moderate to high and 7.2% had high burden; 43.33% had mild to moderate burden, 35.83% had moderate to severe and 15% had little or no burden; 61.5% had mild to moderate, 23.1% had moderate to severe and 15.4% had no burden; and 20% had little to no burden and 64.0% had mild to moderate, 14.0% had moderate to severe and 2.0% had severe burden respectively. In contrast this, a study conducted by Khanal \u0026amp; Chalise[29] found that only 12.0% of family members had expressed burden. This difference may be because of inclusion criteria.\u003c/p\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eFactors associated with caregiving burdens\u003c/h2\u003e \u003cp\u003eCurrent study depicted that the older adults\u0026rsquo; related possible factors of burden were having numbers of health problems (0.000), with their types {COPD/asthma (0.017), hypertension (0.000), paralysis (0.000), urinary problems (0.041), gastrointestinal problems (0.001)} and their psychological status (0.003). Another possible factor of burden in this study was level of ADLs (0.000) which was consistent with the study of Tuttle, Griffiths, \u0026amp; Kaunnil [36] and Abdul, et al [32] as ADL status of the care recipients (p\u0026thinsp;=\u0026thinsp;0.003) and their functional independence (P\u0026thinsp;\u0026lt;\u0026thinsp;0.001). Current study also showed that economic category (p\u0026thinsp;=\u0026thinsp;0.047) also a possible factor of burden which was supported by findings of Abdul, et al [32] as p\u0026thinsp;=\u0026thinsp;0.034; Baysan \u0026amp; Mandiracioglu [31].\u003c/p\u003e \u003cp\u003eCurrent study depicted that health status (p\u0026thinsp;=\u0026thinsp;0.000) of family caregivers was the possible factor of burden which was consistent with the studies of Baysan \u0026amp; Mandiracioglu [31] as physical health problems (p\u0026thinsp;\u0026lt;\u0026thinsp;0.001) and of Abdul et al [32] found that even presence of chronic diseases (p\u0026thinsp;=\u0026thinsp;0.006). Current study revealed that another possible factor of care burden was daily caring time (p\u0026thinsp;=\u0026thinsp;0.000) which was similar with the finding of Gok Metin, Karadas, Balci, Cankurtaran Zehra [33]. This finding was also consistent with the study of Tuttle, Griffiths, \u0026amp; Kaunnil [36] as the caring hours (p\u0026thinsp;=\u0026thinsp;.017) was another possible factor of caregiving burden.\u003c/p\u003e \u003cp\u003eCurrent study finding depicted that age group of family caregivers was not the possible factor of caregiving burden, but the studies conducted by Naing, May \u0026amp; Aung[34] and Tuttle, Griffiths, \u0026amp; Kaunnil [36] depicted as age group as possible factor of burden as p\u0026thinsp;=\u0026thinsp;0.008 and p\u0026thinsp;=\u0026thinsp;0.000 respectively. Other possible factors of caregiving burden was gender (p\u0026thinsp;=\u0026thinsp;0.023) (Abdul et al) [32]; home-sharing (p\u0026thinsp;=\u0026thinsp;0.006), and spending time during the day (p\u0026thinsp;=\u0026thinsp;0.009) (Baysan \u0026amp; Mandiracioglu) [31] these results were contradictory with current study. Likewise, a study done by Lee, Hung, Kim, Chunmi [39] identified as factor influencing subjective burden was spouse of the older adults (t\u0026thinsp;=\u0026thinsp;2.34, p\u0026thinsp;=\u0026thinsp;.020), a study done by Tuttle, Griffiths, \u0026amp; Kaunnil [36] found that the relationship to the care recipients was the possible factor of caregiving burden as p-value 0.009 which was contradictory to the findings of current study. In current study, the educational level of family caregivers was not the possible factor of caregiving burden, while different studies done by Tuttle, Griffiths, \u0026amp; Kaunnil [36] and by Gok Metin, Karadas, Balci, Cankurtaran Zehra[33]found that their education level (p\u0026thinsp;=\u0026thinsp;0.002) was also a possible factors of burden as p \u0026ndash;value less than 0.05.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003ePredictors of Caregiving Burdens\u003c/h2\u003e \u003cp\u003eThis study found that older adults with hypertension as its adjusted odds 1.96 (CI: 1.12\u0026ndash;3.43; p\u0026thinsp;=\u0026thinsp;0.09), with GI problems as its adjusted odds 3.33 (CI: 1.35\u0026ndash;8.21; p\u0026thinsp;=\u0026thinsp;0.009) which was inconsistence with the study done by Sabzwari, et al [40], as the stroke was the predictor of caregiving burden as adjusted odds {3.03 (1.34\u0026ndash;6.86)}. Likewise, this study also revealed that the older adults with complete impairment was 0.37 (CI: 0.16\u0026ndash;0.87; p\u0026thinsp;=\u0026thinsp;0.022). This finding was similar with the study done by Abdul, et al [32] in which their functional independence {\u0026ndash;1.1 (\u0026ndash;1.6, \u0026minus;\u0026thinsp;0.6); P\u0026thinsp;\u0026lt;\u0026thinsp;0.001} was the predicators of caregiving burden. This study also found that economic status sufficient for less than 1 year with adjusted odds 1.79 (CI: 1.05\u0026ndash;3.05; p\u0026thinsp;=\u0026thinsp;0.031) as compared with sufficient for equal or more than one years; the caring duration for 3\u0026ndash;35 months with adjusted odds 0.60 (CI: 0.36\u0026ndash;0.98; p\u0026thinsp;=\u0026thinsp;0.043) as compared to 3 year or above and the average daily caring hours for 8 or more with adjusted odds 2.84 (CI: 1.14\u0026ndash;7.06; p\u0026thinsp;=\u0026thinsp;0.025) as compared to daily caring hours less than 8 hours.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eThis study also has some limitations. As this study follow descriptive cross-sectional survey, it does not allow the researchers to make strict cause effect interpretations of the associations between caregiving burden and related independent variables and its determinants. A longitudinal study is recommended to establish such associations. Due to resource and time constraints, the study sample was drawn from only 2 municipalities of Kathmandu District; as such the sample may not fully represent all the family caregivers of older adults with disability of Kathmandu District. Another limitation of this study was few of family caregivers were denying the researcher for visiting their older relatives with disability because of pandemic of COVID 19.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusions","content":"\u003cp\u003eThis study showed that nearly two third of family caregivers had caregiving burden. The older adults\u0026rsquo; related factors of burden are COPD, hypertension, paralysis, urinary and gastrointestinal problems, psychological status, ADLs and IADLs impairment status. Similarly, the family caregivers\u0026rsquo; related factors are occupation and economic status, residency, family types and size, perceived health status, and perceived extra stress including duration of care, daily caring time and sleep duration. The predictors of caregiving burden are hypertension, gastrointestinal problems, complete impairment in ADLs of the older adults and low economic status, continuous caring for 3\u0026ndash;35 months and daily caring hours (\u0026ge;\u0026thinsp;8) of the family caregivers. The concerned authority of these two municipalities need to address the economic need of family caregivers and local level health institutions need to develop different activities for supporting family caregivers of older adults with disabilities through home visiting.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eADL: Activities of daily living; IADL: Instrumental Activities of Daily Living Scale; CI: Confidence Interval; COPD: Chronic Obstructive Pulmonary Disease; HTN: Hypertension, GI: Gastrointestinal, ZBI: Zarit Burden Interview\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eResearcher expressed her gratitude for Xiangya School of Nursing, Central South University China and Nepal Health Research Council for providing her ethical permission for conducting this study. She also expressed acknowledgement for authorities of Tarakeshwor and Gokarneshwor municipalities. In addition, she expressed her gratitude to Bibhav Adhikari, Prem Prasad Panta and Nabina Paneru for data entry and statistical analysis. She expressed her gratitude to all family caregivers of older adults who voluntarily participated in this study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eStudy concept and design: Raj Devi Adhikari Ghimire, Prof Dr Siyuan Tang. Data acquisition: Raj Devi Adhikari Ghimire. \u0026nbsp;Data analysis: Raj Devi Adhikari Ghimire, Prof. Dr Siyuan Tang, Lec. Amrita Shrestha. Interpretation of data: all authors. Drafting of the manuscript: Raj Devi Adhikari Ghimire, and Amrita Shrestha. Critical revision of the manuscript: all authors. Raj Devi Adhikari had full access to all data in this study and takes responsibility for the integrity of data and the accuracy of data analysis. The final manuscript has been read and approved by all named authors.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis research did not receive grant from any funding agency in the public or commercial or not-for-profit sectors.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analyzed during the current study are available from Raj Devi Adhikari Ghimire at [email protected] on reasonable request.\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003ehttps://drive.google.com/file/d/1mteuuGgF508NXBpCb-udT4ltLFqH3eyb/view?usp=sharing\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWritten informed consent and permission for interviews and publication were received from all study participants and their main adult caregivers. Approved from Nepal Health Research Council in 2\u003csup\u003end\u003c/sup\u003e Sep 2021, approved \u0026nbsp; NHRC Number was 455-202-PhD.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor details\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e1 Doctoral Candidate of Xiangya School of Nursing, Central South University, Changsha, Hunan Province, China. 2 Associate Professor of Maharajgunj Nursing Campus, Institute of Medicine, Tribhuvan University. 3 Professor of Xiangya School of Nursing, Central South University, Changsha, Hunan Province, China.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eOrganization WH (2017) \u003cem\u003eIntegrated care for older people (ICOPE) Guidelines on community-level interventions to manage declines in intrinsic capacity\u003c/em\u003e, in \u003cem\u003eICOPE guidelines \u0026ndash; World Health Organization\u003c/em\u003e. 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PubMed\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTables 1 to 5 are available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"Xiangya School of Nursing, Central South University, China ","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Caregiving burden, Family caregivers, Older adults with disability","lastPublishedDoi":"10.21203/rs.3.rs-6222070/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6222070/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eIntroduction:\u003c/strong\u003e The continuous increased in the ageing population suffering from chronic diseases with difficulty in performing activities of daily livings (ADLs) and instrumental activities of daily livings (IADLs) increasing their needs of care. Because of limited health facilities and support; the family caregivers may experience burden.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eObjective: \u003c/strong\u003eTo identify factors associated with caregiving burden of family caregivers of older adults with disability.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eDescriptive cross-sectional survey was conducted by using non-probability convenient sampling technique from 430 family caregivers of older adults with disability residing in Tarakeshwor and Gokarneshwor Municipalities of Kathmandu. Data was collected through in personal interview by using pretested Nepali version of structured interview questionnaire consisting socio-demographic characteristics of older adults and their family caregivers, care provision related variables, social support questionnaire and 22-item Zarit Burden questionnaire. SPSS version 25 was used for data analysis especially descriptive statistics (frequency, percentage and mean as well as standard deviation), inferential statistics (Logistic regression model: univariate and multivariate) were used to identify factors associated with caregiving burden.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003eIn this study, 65.3% of family caregivers had caregiving burden in which statistically significant association was depicted with COPD, hypertension, paralysis, urinary and gastrointestinal problems, health problems, psychological status, impaired ADLs and IADLs of older adults and also occupation and economic status, residency, types and size of family, perceived extra stress, health status, duration of care, daily caring hours, and sleep time of family caregivers. The predictors of burden were older adults with hypertension [AOR:1.96 (CI: 1.12-3.43; p=0.019)]; gastrointestinal problems [AOR: 3.33 (CI: 1.35-8.21; p=0.009)]; complete impairment [AOR: 0.37 (CI: 0.16-0.87; p=0.022)] and family caregivers with low economic status [AOR: 1.79 (CI: 1.05-3.05; p=0.031)]; caring for 3-35 months [AOR 0.60 (CI: 0.36-0.98; p=0.043)]; long caring hours (≥8) [ AOR 2.84 (CI: 1.14-7.06; p=0.025)].\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion:\u003c/strong\u003e As two third of family caregivers feel burden, the predictors of burden are hypertension, gastrointestinal problems and impairment in ADLs of the older adults and low economic status, caring for 3-35 months and long caring hours (≥8) of the family caregivers. The concerned authority of these two municipalities need to address the economic need of family caregivers and local level health institutions need to develop different activities for supporting family caregivers of older adults with disabilities through home visiting.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTrial registration: \u003c/strong\u003eNot applicable\u003c/p\u003e","manuscriptTitle":"Factors Associated with Caregiving Burden of Family Caregivers of Older Adults with Disability, Kathmandu, Nepal","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-03-17 04:55:04","doi":"10.21203/rs.3.rs-6222070/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"08484fe1-4eb2-4849-a465-9d2de8c8fe1e","owner":[],"postedDate":"March 17th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":45654231,"name":"Nursing"}],"tags":[],"updatedAt":"2025-03-17T04:55:04+00:00","versionOfRecord":[],"versionCreatedAt":"2025-03-17 04:55:04","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6222070","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6222070","identity":"rs-6222070","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}