Background: The increasing prevalence of chronic and terminal illnesses among the aging population has elevated the role of family members as primary caregivers for seriously ill patients, particularly in rural settings. This shift places significant burdens on caregivers, encompassing financial, emotional, and physical challenges, thereby impacting their own quality of life and well-being.Objective: This study aimed to explore the factors associated with informal caregiver burden in rural patients with critical illnesses to understand the potential effects of protective and risk factors to formulate targeted interventions to enhance the overall care and outcomes for critically ill older adult patients in rural areas. Methods: A cross-sectional survey was conducted in rural Kerala, India, focusing on informal caregivers of critically ill patients. Using stratified cluster sampling, two community health centers were selected, and 120 caregivers were selected using convenience sampling. The Caregiver Burden Inventory and Modified Barthel Index assessed caregiver burden and activities of daily living, while depression in caregivers was evaluated through the Patient Health Questionnaire-9. Data were analyzed using SPSS, employing descriptive statistics and correlation analysis to explore relationships between caregiver characteristics and outcomes. Results: This study unveiled a high prevalence of caregiver burden (mean score 44 ± 21.8) and depression (32% with a mean score of 8.7 ± 6.22) among informal caregivers. Caregiver burden was significantly associated with poor physical health, employment status, and caregiving hours. Caregiver depression was notably associated with being a partner, lower family earnings, younger age, and poorer perceived health. The correlation analysis demonstrated a positive relationship between caregiver burden and depression (r = 0.687, p < 0.01) and a negative correlation with patient dependability (r = −0.514, p < 0.01). Conclusion: Family caregivers in rural areas experience significant burden, with factors, such as the patient’s age, the caregiver’s employment status, and caregiving hours, playing crucial roles. The identified correlations between caregiver burden, depression, and patient dependability emphasize the complexity of challenges faced by caregivers, necessitating targeted interventions and support systems tailored to the unique circumstances of rural caregiving for critically ill patients.

Keywords: Caregiver burden, depression, older adults, family caregivers, informal caregivers, terminally ill, bedridden persons

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Full text is available to subscribers and institutional members. Please choose an option below to access it.

1. Prince MJ, Wu F, Guo Y, Robledo LM, O’Donnell M, Sullivan R, et al. The burden of disease in older people and implications for health policy and practice. Lancet. 2015.

https://doi.org/10.1016/S0140-6736(14)61347-7.

2. Chakraborty R, Jana A, Vibhute VM. Caregiving: A risk factor of poor health and depression among informal caregivers in India- A comparative analysis. BMC Public Health. 2023;23(1):42. doi: 1186/s12889-022-14880-5.
3. Ajay S, Kasthuri A, Kiran P, Malhotra R. Association of impairments of older persons with caregiver burden among family caregivers: Findings from rural South India. Arch Gerontol Geriatr. 2017. https://doi.org/10.1016/j.archger.2016.10.003.
4. Sebastian SI, Sekhar TV. Intergenerational care and support for elderly: Evidence from Kerala State, India. In: European Population Conference 2012. 2012. p. 1–17. https://epc2012.eaps.nl/papers/120232.
5. Patel P, Muhammad T, Sahoo H. The burden of disease-specific multimorbidity among older adults in India and its states: Evidence from LASI. BMC Geriatr. 2023;23(1):53. doi: 1186/s12877-023-03728-1.
6. Maresova P, Lee S, Fadeyi OO, Kuca K. The social and economic burden on family caregivers for older adults in the Czech Republic. BMC Geriatr. 2020;20(1):171. doi: 1186/s12877-020-01571-2.
7. Giebel CM, Davies S, Clarkson P, Sutcliffe C, Challis D; Members of the HoSt-D Programme Management Group. Costs of formal and informal care at home for people with dementia: ‘Expert panel’ opinions from staff and informal carers. Dementia (London). 2019;18(1):210–227. doi: 1177/1471301216665705.
8. Joo H, Wang G, Yee SL, Zhang P, Sleet D. Economic burden of informal caregiving associated with history of stroke and falls among older adults in the U.S. Am J Prev Med. 2017;53(6S2):S197–S204. doi: 1016/j.amepre.2017.07.020.
9. Liu Z, Heffernan C, Tan J. Caregiver burden: A concept analysis. Int J Nurs Sci. 2020;7(4):438–445. doi: 1016/j.ijnss.2020.07.012.
10. Menon N, Patil VM, Ramaswamy A, Gattani S, Castelino R, Dhekale R, et al. Caregiver burden in older Indian patients with cancer- Experience from a tertiary care center. J Geriatr Oncol. 2022;13(7):970–977. doi: 1016/j.jgo.2022.05.008.
11. Gharavi Y, Stringer B, Hoogendoorn A, Boogaarts J, Van Raaij B, Van Meijel B. Evaluation of an interaction-skills training for reducing the burden of family caregivers of patients with severe mental illness: A pre-posttest design. BMC Psychiatry. 2018;18:1–9. doi: 1186/s12888-018-1669-z.
12. Lambert SD, Bowe SJ, Livingston PM, Heckel L, Cook S, Kowal P, et al. Impact of informal caregiving on older adults’ physical and mental health in low-income and middle-income countries: A cross-sectional, secondary analysis based on the WHO’s Study on global AGEing and adult health (SAGE). BMJ Open. 2017. https://doi.org/10.1136/bmjopen-2017-017236.
13. Lee GB, Woo H, Lee SY, Cheon SM, Kim JW. The burden of care and the understanding of disease in Parkinson’s disease. PLoS One. 2019;14:e0217581. doi: 1371/journal.pone.0217581.
14. Von Känel R, Mausbach BT, Dimsdale JE, Ziegler MG, Mills PJ, Allison MA, et al. Refining caregiver vulnerability for clinical practice: Determinants of self-rated health in spousal dementia caregivers. BMC Geriatr. 2019. https://doi.org/10.1186/s12877-019-1033-2.
15. Fu W, Li J, Fang F, Zhao D, Hao W, Li S. Subjective burdens among informal caregivers of critically ill patients: A cross-sectional study in rural Shandong, China. BMC Palliat Care. 2021;20:167. doi: 1186/s12904-021-00858-4.
16. Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs. 2008;108(9 Suppl):23–27. doi: 1097/01.NAJ.0000336406.45248.4c.
17. Durante A, Greco A, Annoni AM, Steca P, Alvaro R, Vellone E. Determinants of caregiver burden in heart failure: Does caregiver contribution to heart failure patient self-care increase caregiver burden? Eur J Cardiovasc Nurs. 2019;18(8):691–699. doi: 1177/1474515119863173.
18. Souza ALR, Guimaraes RA, de Araujo VD, de Assis RM, de Almeida Cavalcante Oliveira LM, et al. Factors associated with the burden of family caregivers of patients with mental disorders: A cross-sectional study. BMC Psychiatry. 2017;17:353. doi: 1186/s12888-017-1501-1.
19. Saria MG, Nyamathi A, Phillips LR, Stanton AL, Evangelista L, Kesari S, et al. The hidden morbidity of cancer: Burden in caregivers of patients with brain metastases. Nurs Clin North Am. 2017;52:159–178. doi: 1016/j.cnur.2016.10.002.
20. Luo J, Zhou Y, Liu H, Hu J. Factors related to the burden of family caregivers of elderly patients with spinal tumours in Northwest China. BMC Neurol. 2020;20(1):69. doi: 1186/s12883-020-01652-0.
21. Ru J, Ma J, Niu H, Chen Y, Li L, Liu Y, et al. Burden and depression in caregivers of patients with rheumatoid arthritis in China. Int J Rheum Dis. 2019;22(4):608–613. doi: 1111/1756-185X.13397.
22. Tan JY, Molassiotis A, Lloyd-Williams M, Yorke J. Burden, emotional distress and quality of life among informal caregivers of lung cancer patients: An exploratory study. Eur J Cancer Care (Engl). 2018;27(1). doi: 1111/ecc.12691.
23. McPeake J, Devine H, MacTavish P, Fleming L, Crawford R, Struthers R, et al. Caregiver strain following critical care discharge: An exploratory evaluation. J Crit Care. 2016;35:180–184. doi: 1016/j.jcrc.2016.05.023.
24. Haines KJ, Denehy L, Skinner EH, Warrillow S, Berney S. Psychosocial outcomes in informal caregivers of the critically ill: A systematic review. Crit Care Med. 2015;43(5):1112–1120. doi: 1097/CCM.0000000000000865.
25. Lee LJ, Kim Y, Shamburek R, Ross A, Yang L, Bevans MF. Caregiving stress and burden associated with cardiometabolic risk in family caregivers of individuals with cancer. Stress. 2022;25(1):258–266. doi: 1080/10253890.2022.2037548.
26. Cheng WL, Chang CC, Griffiths MD, Yen CF, Liu JH, Su JA, et al. Quality of life and care burden among family caregivers of people with severe mental illness: Mediating effects of self-esteem and psychological distress. BMC Psychiatry. 2022;22:672. doi: 1186/s12888-022-04289-0.
27. Huang SS. Depression among caregivers of patients with dementia: associative factors and management approaches. World J Psychiatry. 2022;12(1):59–76. doi: 5498/wjp.v12.i1.59.
28. Thomas PT, Warrier MG, Sadasivan A, Balasubramanium B, Preethish-kumar V, Nashi S, et al. Caregiver burden and quality of life of patients with amyotrophic lateral sclerosis in India. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19:606–610. doi: 1080/21678421.2018.1482353.
29. Chou KR, Jiann-Chyun L, Chu H. The reliability and validity of the Chinese version of the caregiver burden inventory. Nurs Res. 2002;51(5):324–331. doi: 1097/00006199-200209000-00009.
30. Novak M, Guest C. Application of a multidimensional caregiver burden inventory. Gerontologist. 1989;29(6):798–803. doi: 1093/geront/29.6.798.
31. Chang CH, Ming Y, Chang TH, Yen YY, Lan SJ. The needs and utilization of long-term care service resources by dementia family caregivers and the affecting factors. Int J Environ Res Public Health. 2020;17(16):6009. http://dx.doi.org/10.3390/ijerph17166009.
32. Shah S, Vanclay F, Cooper B. Improving the sensitivity of the Barthel Index for stroke rehabilitation. J Clin Epidemiol. 1989;42(8):703–709. doi: 1016/0895-4356(89)90065-6.
33. Gupta S, Yadav R, Malhotra AK. Assessment of physical disability using Barthel index among elderly of rural areas of district Jhansi (U.P), India. J Family Med Prim Care. 2016;5(4):853–857. doi: 4103/2249-4863.201178.
34. Prasad K, Kumar A, Misra S, Yadav AK, Johri S, Sarkar RS, et al. Reliability and validity of telephonic Barthel Index: An experience from multi-centric randomized control study. Acta Neurol Belg. 2018;118(1):53–59. doi: 1007/s13760-017-0843-2.
35. Kroenke K, Spitzer RL, Williams JB. The PHQ-9: Validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–613. doi: 1046/j.1525-1497.2001.016009606.x.
36. De Man J, Absetz P, Sathish T, et al. Are the PHQ-9 and GAD-7 suitable for use in India? A psychometric analysis. Front Psychol. 2021;12:676398. doi: 3389/fpsyg.2021.676398.
37. Indu PS, Anilkumar TV, Vijayakumar K, Kumar KA, Sarma PS, Remadevi S, et al. Reliability and validity of PHQ-9 when administered by health workers for depression screening among women in primary care. Asian J Psychiatr. 2018;37:10–14. doi: 1016/j.ajp.2018.07.021.
38. Kim SH, Kim O, Bae YH, et al. Caregiver burden according to ageing and type of care activity in caregivers of individuals with spinal cord injury. Spinal Cord Ser Cases. 2023;9:16. doi: 1038/s41394-023-00570-w.
39. Rha SY, Park Y, Song SK, Lee CE, Lee J. Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates. Eur J Oncol Nurs. 2015;19(4):376–382. doi: 1016/j.ejon.2015.01.004.
40. Oldenkamp M, Hagedoorn M, Slaets J, Stolk R, Wittek R, Smidt N. Subjective burden among spousal and adult-child informal caregivers of older adults: Results from a longitudinal cohort study. BMC Geriatr. 2016;16:236. doi: 1186/s12877-016-0350-0.
41. Reinhard SC, Given B, Petlick NH, et al. Supporting family caregivers in providing care. In: Hughes RG, editor. Patient safety and quality: An evidence-based handbook for nurses. Rockville (MD): Agency for Healthcare Research and Quality (US); 2008 Apr. Chapter 14. Available from: https://www.ncbi.nlm.nih.gov/books/NBK2665/
42. Marasinghe KM. Assistive technologies in reducing caregiver burden among informal caregivers of older adults: A systematic review. Disabil Rehabil Assist Technol. 2016;11(5):353–360. doi: 3109/17483107.2015.1087061.
43. Kumar A, Yadav AK, Singh VK, Pathak A, Chaurasia RN, Mishra VN, Joshi D. Caregiver burden in caregivers of stroke survivors: A hospital-based study. Ann Indian Acad Neurol. 2022;25:1092–1098. doi: 4103/aian.aian_318_22.
44. Oldenkamp M, Hagedoorn M, Slaets J, Stolk R, Wittek R, Smidt N. Subjective burden among spousal and adult-child informal caregivers of older adults: Results from a longitudinal cohort study. BMC Geriatr. 2016;16:236. doi: 1186/s12877-016-0350-0.
45. Passoni S, Toraldo A, Villa B, Bottini G. Prolonged grief in caregivers of community-dwelling dementia patients. Am J Alzheimers Dis Other Demen. 2015;30(2):192–200. doi: 1177/1533317514542643.
46. Thunyadee C, Sitthimongkol Y, Sangon S, Chai-Aroon T, Hegadoren KM. Predictors of depressive symptoms and physical health in caregivers of individuals with schizophrenia. Nurs Health Sci. 2015;17(4):412–419. doi: 1111/nhs.12205.
47. Laks J, Goren A, Dueñas H, Novick D, Kahle-Wrobleski K. Caregiving for patients with Alzheimer’s disease or dementia and its association with psychiatric and clinical comorbidities and other health outcomes in Brazil. Int J Geriatr Psychiatry. 2016;31(2):176–185. doi: 1002/gps.4309.
48. Rodakowski J, Skidmore ER, Rogers JC, Schulz R. Role of social support in predicting caregiver burden. Arch Phys Med Rehabil. 2012;93(12):2229–2236. doi: 1016/j.apmr.2012.07.004.
49. Borges EL, Franceschini J, Degani Costa LH, Godoy Fernandes AL, Jamnik S, Santoro IL. Family caregiver burden: The burden of caring for lung cancer patients according to the cancer stage and patient quality of life. J Bras Pneumol. 2017;43(1):18–23.

Background: The increasing prevalence of chronic and terminal illnesses among the aging population has elevated the role of family members as primary caregivers for seriously ill patients, particularly in rural settings. This shift places significant burdens on caregivers, encompassing financial, emotional, and physical challenges, thereby impacting their own quality of life and well-being.Objective: This study aimed to explore the factors associated with informal caregiver burden in rural patients with critical illnesses to understand the potential effects of protective and risk factors to formulate targeted interventions to enhance the overall care and outcomes for critically ill older adult patients in rural areas. Methods: A cross-sectional survey was conducted in rural Kerala, India, focusing on informal caregivers of critically ill patients. Using stratified cluster sampling, two community health centers were selected, and 120 caregivers were selected using convenience sampling. The Caregiver Burden Inventory and Modified Barthel Index assessed caregiver burden and activities of daily living, while depression in caregivers was evaluated through the Patient Health Questionnaire-9. Data were analyzed using SPSS, employing descriptive statistics and correlation analysis to explore relationships between caregiver characteristics and outcomes. Results: This study unveiled a high prevalence of caregiver burden (mean score 44 ± 21.8) and depression (32% with a mean score of 8.7 ± 6.22) among informal caregivers. Caregiver burden was significantly associated with poor physical health, employment status, and caregiving hours. Caregiver depression was notably associated with being a partner, lower family earnings, younger age, and poorer perceived health. The correlation analysis demonstrated a positive relationship between caregiver burden and depression (r = 0.687, p < 0.01) and a negative correlation with patient dependability (r = −0.514, p < 0.01). Conclusion: Family caregivers in rural areas experience significant burden, with factors, such as the patient’s age, the caregiver’s employment status, and caregiving hours, playing crucial roles. The identified correlations between caregiver burden, depression, and patient dependability emphasize the complexity of challenges faced by caregivers, necessitating targeted interventions and support systems tailored to the unique circumstances of rural caregiving for critically ill patients.

Keywords: Caregiver burden, depression, older adults, family caregivers, informal caregivers, terminally ill, bedridden persons

🔒 This is a subscription article

Full text is available to subscribers and institutional members. Please choose an option below to access it.

1. Prince MJ, Wu F, Guo Y, Robledo LM, O’Donnell M, Sullivan R, et al. The burden of disease in older people and implications for health policy and practice. Lancet. 2015.

https://doi.org/10.1016/S0140-6736(14)61347-7.

2. Chakraborty R, Jana A, Vibhute VM. Caregiving: A risk factor of poor health and depression among informal caregivers in India- A comparative analysis. BMC Public Health. 2023;23(1):42. doi: 1186/s12889-022-14880-5.
3. Ajay S, Kasthuri A, Kiran P, Malhotra R. Association of impairments of older persons with caregiver burden among family caregivers: Findings from rural South India. Arch Gerontol Geriatr. 2017. https://doi.org/10.1016/j.archger.2016.10.003.
4. Sebastian SI, Sekhar TV. Intergenerational care and support for elderly: Evidence from Kerala State, India. In: European Population Conference 2012. 2012. p. 1–17. https://epc2012.eaps.nl/papers/120232.
5. Patel P, Muhammad T, Sahoo H. The burden of disease-specific multimorbidity among older adults in India and its states: Evidence from LASI. BMC Geriatr. 2023;23(1):53. doi: 1186/s12877-023-03728-1.
6. Maresova P, Lee S, Fadeyi OO, Kuca K. The social and economic burden on family caregivers for older adults in the Czech Republic. BMC Geriatr. 2020;20(1):171. doi: 1186/s12877-020-01571-2.
7. Giebel CM, Davies S, Clarkson P, Sutcliffe C, Challis D; Members of the HoSt-D Programme Management Group. Costs of formal and informal care at home for people with dementia: ‘Expert panel’ opinions from staff and informal carers. Dementia (London). 2019;18(1):210–227. doi: 1177/1471301216665705.
8. Joo H, Wang G, Yee SL, Zhang P, Sleet D. Economic burden of informal caregiving associated with history of stroke and falls among older adults in the U.S. Am J Prev Med. 2017;53(6S2):S197–S204. doi: 1016/j.amepre.2017.07.020.
9. Liu Z, Heffernan C, Tan J. Caregiver burden: A concept analysis. Int J Nurs Sci. 2020;7(4):438–445. doi: 1016/j.ijnss.2020.07.012.
10. Menon N, Patil VM, Ramaswamy A, Gattani S, Castelino R, Dhekale R, et al. Caregiver burden in older Indian patients with cancer- Experience from a tertiary care center. J Geriatr Oncol. 2022;13(7):970–977. doi: 1016/j.jgo.2022.05.008.
11. Gharavi Y, Stringer B, Hoogendoorn A, Boogaarts J, Van Raaij B, Van Meijel B. Evaluation of an interaction-skills training for reducing the burden of family caregivers of patients with severe mental illness: A pre-posttest design. BMC Psychiatry. 2018;18:1–9. doi: 1186/s12888-018-1669-z.
12. Lambert SD, Bowe SJ, Livingston PM, Heckel L, Cook S, Kowal P, et al. Impact of informal caregiving on older adults’ physical and mental health in low-income and middle-income countries: A cross-sectional, secondary analysis based on the WHO’s Study on global AGEing and adult health (SAGE). BMJ Open. 2017. https://doi.org/10.1136/bmjopen-2017-017236.
13. Lee GB, Woo H, Lee SY, Cheon SM, Kim JW. The burden of care and the understanding of disease in Parkinson’s disease. PLoS One. 2019;14:e0217581. doi: 1371/journal.pone.0217581.
14. Von Känel R, Mausbach BT, Dimsdale JE, Ziegler MG, Mills PJ, Allison MA, et al. Refining caregiver vulnerability for clinical practice: Determinants of self-rated health in spousal dementia caregivers. BMC Geriatr. 2019. https://doi.org/10.1186/s12877-019-1033-2.
15. Fu W, Li J, Fang F, Zhao D, Hao W, Li S. Subjective burdens among informal caregivers of critically ill patients: A cross-sectional study in rural Shandong, China. BMC Palliat Care. 2021;20:167. doi: 1186/s12904-021-00858-4.
16. Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs. 2008;108(9 Suppl):23–27. doi: 1097/01.NAJ.0000336406.45248.4c.
17. Durante A, Greco A, Annoni AM, Steca P, Alvaro R, Vellone E. Determinants of caregiver burden in heart failure: Does caregiver contribution to heart failure patient self-care increase caregiver burden? Eur J Cardiovasc Nurs. 2019;18(8):691–699. doi: 1177/1474515119863173.
18. Souza ALR, Guimaraes RA, de Araujo VD, de Assis RM, de Almeida Cavalcante Oliveira LM, et al. Factors associated with the burden of family caregivers of patients with mental disorders: A cross-sectional study. BMC Psychiatry. 2017;17:353. doi: 1186/s12888-017-1501-1.
19. Saria MG, Nyamathi A, Phillips LR, Stanton AL, Evangelista L, Kesari S, et al. The hidden morbidity of cancer: Burden in caregivers of patients with brain metastases. Nurs Clin North Am. 2017;52:159–178. doi: 1016/j.cnur.2016.10.002.
20. Luo J, Zhou Y, Liu H, Hu J. Factors related to the burden of family caregivers of elderly patients with spinal tumours in Northwest China. BMC Neurol. 2020;20(1):69. doi: 1186/s12883-020-01652-0.
21. Ru J, Ma J, Niu H, Chen Y, Li L, Liu Y, et al. Burden and depression in caregivers of patients with rheumatoid arthritis in China. Int J Rheum Dis. 2019;22(4):608–613. doi: 1111/1756-185X.13397.
22. Tan JY, Molassiotis A, Lloyd-Williams M, Yorke J. Burden, emotional distress and quality of life among informal caregivers of lung cancer patients: An exploratory study. Eur J Cancer Care (Engl). 2018;27(1). doi: 1111/ecc.12691.
23. McPeake J, Devine H, MacTavish P, Fleming L, Crawford R, Struthers R, et al. Caregiver strain following critical care discharge: An exploratory evaluation. J Crit Care. 2016;35:180–184. doi: 1016/j.jcrc.2016.05.023.
24. Haines KJ, Denehy L, Skinner EH, Warrillow S, Berney S. Psychosocial outcomes in informal caregivers of the critically ill: A systematic review. Crit Care Med. 2015;43(5):1112–1120. doi: 1097/CCM.0000000000000865.
25. Lee LJ, Kim Y, Shamburek R, Ross A, Yang L, Bevans MF. Caregiving stress and burden associated with cardiometabolic risk in family caregivers of individuals with cancer. Stress. 2022;25(1):258–266. doi: 1080/10253890.2022.2037548.
26. Cheng WL, Chang CC, Griffiths MD, Yen CF, Liu JH, Su JA, et al. Quality of life and care burden among family caregivers of people with severe mental illness: Mediating effects of self-esteem and psychological distress. BMC Psychiatry. 2022;22:672. doi: 1186/s12888-022-04289-0.
27. Huang SS. Depression among caregivers of patients with dementia: associative factors and management approaches. World J Psychiatry. 2022;12(1):59–76. doi: 5498/wjp.v12.i1.59.
28. Thomas PT, Warrier MG, Sadasivan A, Balasubramanium B, Preethish-kumar V, Nashi S, et al. Caregiver burden and quality of life of patients with amyotrophic lateral sclerosis in India. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19:606–610. doi: 1080/21678421.2018.1482353.
29. Chou KR, Jiann-Chyun L, Chu H. The reliability and validity of the Chinese version of the caregiver burden inventory. Nurs Res. 2002;51(5):324–331. doi: 1097/00006199-200209000-00009.
30. Novak M, Guest C. Application of a multidimensional caregiver burden inventory. Gerontologist. 1989;29(6):798–803. doi: 1093/geront/29.6.798.
31. Chang CH, Ming Y, Chang TH, Yen YY, Lan SJ. The needs and utilization of long-term care service resources by dementia family caregivers and the affecting factors. Int J Environ Res Public Health. 2020;17(16):6009. http://dx.doi.org/10.3390/ijerph17166009.
32. Shah S, Vanclay F, Cooper B. Improving the sensitivity of the Barthel Index for stroke rehabilitation. J Clin Epidemiol. 1989;42(8):703–709. doi: 1016/0895-4356(89)90065-6.
33. Gupta S, Yadav R, Malhotra AK. Assessment of physical disability using Barthel index among elderly of rural areas of district Jhansi (U.P), India. J Family Med Prim Care. 2016;5(4):853–857. doi: 4103/2249-4863.201178.
34. Prasad K, Kumar A, Misra S, Yadav AK, Johri S, Sarkar RS, et al. Reliability and validity of telephonic Barthel Index: An experience from multi-centric randomized control study. Acta Neurol Belg. 2018;118(1):53–59. doi: 1007/s13760-017-0843-2.
35. Kroenke K, Spitzer RL, Williams JB. The PHQ-9: Validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–613. doi: 1046/j.1525-1497.2001.016009606.x.
36. De Man J, Absetz P, Sathish T, et al. Are the PHQ-9 and GAD-7 suitable for use in India? A psychometric analysis. Front Psychol. 2021;12:676398. doi: 3389/fpsyg.2021.676398.
37. Indu PS, Anilkumar TV, Vijayakumar K, Kumar KA, Sarma PS, Remadevi S, et al. Reliability and validity of PHQ-9 when administered by health workers for depression screening among women in primary care. Asian J Psychiatr. 2018;37:10–14. doi: 1016/j.ajp.2018.07.021.
38. Kim SH, Kim O, Bae YH, et al. Caregiver burden according to ageing and type of care activity in caregivers of individuals with spinal cord injury. Spinal Cord Ser Cases. 2023;9:16. doi: 1038/s41394-023-00570-w.
39. Rha SY, Park Y, Song SK, Lee CE, Lee J. Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates. Eur J Oncol Nurs. 2015;19(4):376–382. doi: 1016/j.ejon.2015.01.004.
40. Oldenkamp M, Hagedoorn M, Slaets J, Stolk R, Wittek R, Smidt N. Subjective burden among spousal and adult-child informal caregivers of older adults: Results from a longitudinal cohort study. BMC Geriatr. 2016;16:236. doi: 1186/s12877-016-0350-0.
41. Reinhard SC, Given B, Petlick NH, et al. Supporting family caregivers in providing care. In: Hughes RG, editor. Patient safety and quality: An evidence-based handbook for nurses. Rockville (MD): Agency for Healthcare Research and Quality (US); 2008 Apr. Chapter 14. Available from: https://www.ncbi.nlm.nih.gov/books/NBK2665/
42. Marasinghe KM. Assistive technologies in reducing caregiver burden among informal caregivers of older adults: A systematic review. Disabil Rehabil Assist Technol. 2016;11(5):353–360. doi: 3109/17483107.2015.1087061.
43. Kumar A, Yadav AK, Singh VK, Pathak A, Chaurasia RN, Mishra VN, Joshi D. Caregiver burden in caregivers of stroke survivors: A hospital-based study. Ann Indian Acad Neurol. 2022;25:1092–1098. doi: 4103/aian.aian_318_22.
44. Oldenkamp M, Hagedoorn M, Slaets J, Stolk R, Wittek R, Smidt N. Subjective burden among spousal and adult-child informal caregivers of older adults: Results from a longitudinal cohort study. BMC Geriatr. 2016;16:236. doi: 1186/s12877-016-0350-0.
45. Passoni S, Toraldo A, Villa B, Bottini G. Prolonged grief in caregivers of community-dwelling dementia patients. Am J Alzheimers Dis Other Demen. 2015;30(2):192–200. doi: 1177/1533317514542643.
46. Thunyadee C, Sitthimongkol Y, Sangon S, Chai-Aroon T, Hegadoren KM. Predictors of depressive symptoms and physical health in caregivers of individuals with schizophrenia. Nurs Health Sci. 2015;17(4):412–419. doi: 1111/nhs.12205.
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