Citation Information :
Hansda U, Tripathy S, Sahoo AK, Panda I, Shetty AP, Sanyal K, Venkateshan M, Paniyadi NK, Rao PB, Mahapatra S. Home Care of Tracheostomized Chronically Critically Ill Patients: A Study of Caregivers’ Burden and Comparison with the Burden of Palliative Care Patients in India. Indian J Crit Care Med 2022; 26 (5):577-581.
Introduction: Chronically critically ill (CCI) patients often have high costs of care and poor outcomes. Disease management programs offering home care may reduce costs but needs buy-in from informal caregivers. An understanding of caregiver burden in this population is lacking. We aimed to study the caregiver burden, its change over time, and factors affecting it, in post-ICU tracheostomized patients. We compared the caregiver burden among CCI carers to that of palliative caregivers.
Methods: Informal caregivers of thirty chronically critically ill tracheostomized patients (CGcci) were administered the Caregivers Burden Scale (CBS) tool at discharge, 2 and 4 weeks after discharge. A one-point assessment of burden was made in 30 caregivers of patients enrolled in Pain and Palliative care clinic (CGpc). Linear mixed models for repeated measures were used to analyze score of CGcci over time and compared to the burden in physical, psychologic, economic, time, and social domains between groups.
Results: All 60 caregivers were young (33-35 years), predominantly male, and children of the patients. Both CGcci and CGpc had moderate burden score of 60.5 (14.7) vs 61.5 (13), respectively. Physical burden (11.5 vs 8) was greater in CGcci (p = 0.001) compared to psychologic domain (10 vs 12.5) in CGpc (p = 0.01). Burden score over all domains in CGcci decreased rapidly from 67.5 (8) to 55 (16.5) (p = 0.001) in the first month after discharge.
Conclusion: Burden of care among caregivers of tracheostomized chronically critically ill patients is comparable to those of palliative caregivers and reduces significantly with time.
CTRI: 2020/11/029443 (registered on: 27/11/2020)
Choi J, Donahoe MP, Zullo TG, Hoffman LA. Caregivers of the chronically critically ill after discharge from the intensive care unit: six months’ experience. Am J Crit Care 2011;20(1):12–22; quiz 23. DOI: 10.4037/ajcc2011243.
Choi J, Lingler JH, Donahoe MP, Happ MB, Hoffman LA, Tate JA. Home discharge following critical illness: A qualitative analysis of family caregiver experience. Heart Lung 2018;47(4):401–407. DOI: 10.1016/j.hrtlng.2018.04.003.
Lall D, Engel N, Devadasan N, Horstman K, Criel B. Models of care for chronic conditions in low/middle-income countries: a ‘best fit’ framework synthesis. BMJ Glob Heal 2018;3(6):e001077. DOI: 10.1136/bmjgh-2018-001077.
Nakarada-Kordic I, Patterson N, Wrapson J, Reay SD. A Systematic Review of Patient and Caregiver Experiences with a Tracheostomy. Patient 2018;11(2):175–191. DOI: 10.1007/s40271-017-0277-1.
Ampalam P, Gunturu S, Padma V. A comparative study of caregiver burden in psychiatric illness and chronic medical illness. Indian J Psychiatry 2012;54(3):239–243. DOI: 10.4103/0019-5545.102423.
Yan E, Kwok T. Abuse of older Chinese with dementia by family caregivers: An inquiry into the role of caregiver burden. Int J Geriatr Psychiatry 2011;26(5):527–535. DOI: 10.1002/gps.2561.
Del-Pino-Casado R, Priego-Cubero E, López-Martínez C, Orgeta V. Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis. PLoS One 2021;16(3):e0247143. DOI: 10.1371/journal.pone.0247143.
Nelson JE, Hope AA. Integration of palliative care in chronic critical illness management. Respir Care 2012;57(6):1004–1012; discussion 1012-3. DOI: 10.4187/respcare.01624.
Pandey, Halder SK, Rath PK. Development and validation of “Caregiver Burden Scale-Indian Population.” Int J Prev Med 2019;10(1):31. DOI: 10.4103/2008-7802.253422.
Chandran V, Madi D, Chowta N, Ramapuram J, Bhaskaran U, Achappa B, et al. Caregiver Burden among Adults Caring for People Living with HIV/AIDS (PLWHA) in Southern India. J Clin Diagn Res 2016;10(5):OC41–OC43. DOI: 10.7860/JCDR/2016/20076.7865.
Donath C, Luttenberger K, Graessel E, Scheel J, Pendergrass A, Behrndt E-M. Can brief telephone interventions reduce caregiver burden and depression in caregivers of people with cognitive impairment?-long-term results of the German day-care study (RCT). BMC Geriatr 2019 191. 2019;19(1):1–15. DOI: 10.1186/s12877-019-1207-y.
Boucher A, Haesebaert J, Freitas A, Adekpedjou R, Landry M, Bourassa H, et al. Time to move? Factors associated with burden of care among informal caregivers of cognitively impaired older people facing housing decisions: secondary analysis of a cluster randomized trial. BMC Geriatr 2019;19(1):249. DOI: 10.1186/s12877-019-1249-1.
Janssen TL, Lodder P, de Vries J, van Hoof-de Lepper CCHA, Gobardhan PD, Ho GH, et al. Caregiver strain on informal caregivers when providing care for older patients undergoing major abdominal surgery: a longitudinal prospective cohort study. BMC Geriatr 2020;20(1):178. DOI: 10.1186/s12877-020-01579-8.
Goswami S, Gupta SS. How cancer of oral cavity affects the family caregivers? A cross-sectional study in Wardha, India, using the Caregiver Quality of Life Index - Cancer questionnaire. South Asian J Cancer 2020;9(1):62–65. DOI: 10.4103/sajc.sajc_331_18.
Bekdemir A, Ilhan N. Predictors of Caregiver Burden in Caregivers of Bedridden Patients. J Nurs Res 2019;27(3):e24. DOI: 10.1097/jnr.0000000000000297.
Leung DYP, Chan HYL, Chiu PKC, Lo RSK, Lee LLY. Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient's Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers. Int J Environ Res Public Health 2020;17(15):5457. DOI: 10.3390/ijerph17155457.
Phetsitong R, Vapattanawong P, Sunpuwan M, Völker M. State of household need for caregivers and determinants of psychological burden among caregivers of older people in Thailand: An analysis from national surveys on older persons. PLoS One 2019;14(12):e0226330. DOI: 10.1371/journal.pone.0226330.
Ahmad Zubaidi ZS, Ariffin F, Oun CTC, Katiman D. Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study. BMC Palliat Care 2020;19(1):1–15.
Yeager A, LaVigne AW, Rajvanshi A, Mahato B, Mohan R, Sharma R, et al. CanSupport: a model for home-based palliative care delivery in India. Ann Palliat Med 2016;5(3):166–171. DOI: 10.21037/apm.2016.05.04.
Health Quality Ontario. In-home care for optimizing chronic disease management in the community: an evidence-based analysis. Ont Health Technol Assess Ser 2013;13(5):1–65.
Buhler-Wilkerson K. Care of the chronically ill at home: an unresolved dilemma in health policy for the United States. Milbank Q 2007;85(4):611–639. DOI: 10.1111/j.1468-0009.2007.00503.x.