Intensity of care and perceived burden among informal caregivers to persons with chronic medical conditions: a systematic review and meta-analysis

References

• Ronksley PE, Sanmartin C, Campbell DJ, et al. Perceived barriers to primary care among Western canadians with chronic conditions. Health Rep. 2014;25(4):3–10.
   Web of Science ®Google Scholar
• Ward BW, Schiller JS, Goodman RA. Peer reviewed: multiple chronic conditions among us adults: a 2012 update. Prev Chronic Dis. 2014;11:130389.
   Web of Science ®Google Scholar
• Reinhard SC, Given B, Petlick NH, et al. Supporting family caregivers in providing care. In: Patient safety and quality: an evidence-based handbook for nurses. Rockville (MD): Agency for Healthcare Research and Quality; 2008.
   Google Scholar
• National Alliance for Caregiving and AARP Public Policy Institute [Internet]. 2015 report: caregiving in the U.S. Washington (DC): National Alliance for Caregiving and AARP Public Policy Institute (US); 2015 [cited 2021 Aug 2]. Available from: https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf
   Google Scholar
• Lilly MB, Laporte A, Coyte PC. Labor market work and home care’s unpaid caregivers: a systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work. Milbank Q. 2007;85(4):641–690.
   PubMed Web of Science ®Google Scholar
• Stenberg U, Ruland CM, Miaskowski C. Review of the literature on the effects of caring for a patient with cancer. Psychooncology. 2010;19(10):1013–1025.
   PubMed Web of Science ®Google Scholar
• Turner A, Findlay L. Informal caregiving for seniors. Health Rep. 2012;23(3):33–36.
   PubMed Web of Science ®Google Scholar
• Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18(2):250–267.
   PubMed Web of Science ®Google Scholar
• Vitaliano PP, Zhang J, Scanlan JM. Is caregiving hazardous to one’s physical health? A meta-analysis. Psychol Bull. 2003;129(6):946–972.
   PubMed Web of Science ®Google Scholar
• Zarit SH, Todd PA, Zarit JM. Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist. 1986;26(3):260–266.
   PubMed Web of Science ®Google Scholar
• Morimoto T, Schreiner AS, Asano H. Caregiver burden and health-related quality of life among Japanese stroke caregivers. Age Ageing. 2003;32(2):218–223.
   PubMed Web of Science ®Google Scholar
• Qutub K, Lacomis D, Albert SM, et al. Life factors affecting depression and burden in amyotrophic lateral sclerosis caregivers. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15(3–4):292–297.
   PubMed Web of Science ®Google Scholar
• Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA. 1999;282(23):2215–2219.
   PubMed Web of Science ®Google Scholar
• Koyanagi A, DeVylder JE, Stubbs B, et al. Depression, sleep problems, and perceived stress among informal caregivers in 58 low-, middle-, and high-income countries: a cross-sectional analysis of community-based surveys. J Psychiatr Res. 2018;96:115–123.
   PubMed Web of Science ®Google Scholar
• Zwar L, König HH, Hajek A. Do informal caregivers expect to die earlier? A longitudinal study with a population-based sample on subjective life expectancy of informal caregivers. Gerontology. 2021;67(4):467–465.
   PubMed Web of Science ®Google Scholar
• Montgomery RJ, Gonyea JG, Hooyman NR. Caregiving and the experience of subjective and objective burden. Fam Relat. 1985;34(1):19–26.
   Web of Science ®Google Scholar
• Hlatky MA, Boineau RE, Higginbotham MB, et al. A brief self-administered questionnaire to determine functional capacity (the duke activity status index). Am J Cardiol. 1989;64(10):651–654.
   PubMed Web of Science ®Google Scholar
• Marinus J, Visser M, Stiggelbout AM, et al. A short scale for the assessment of motor impairments and disabilities in Parkinson’s disease: the SPES/SCOPA. J Neurol Neurosurg Psychiatry. 2004;75(3):388–395.
   PubMed Web of Science ®Google Scholar
• Schwab RS, England AC. Jr. Projection technique for evaluating surgery in Parkinson’s disease. In: Gillingham FJ, Donaldson IML, editors. Third symposium on Parkinson’s disease. Edinburgh (UK); London (UK): E&S Livingstone Ltd., 1969. p. 152–157.
   Google Scholar
• National Alliance for Caregiving and AARP. Family caregiving in the U.S.: Findings from a national survey. Washington (DC): National Alliance for Caregiving and AARP Public Policy Institute (US); 1997 [cited 2021 Aug 2]. Available from: https://assets.aarp.org/rgcenter/il/caregiving_97.pdf
   Google Scholar
• Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–655.
   PubMed Web of Science ®Google Scholar
• Kudra A, Lees C, Morrell-Scott N. Measuring carer burden in informal carers of patients with long-term conditions. Br J Community Nurs. 2017;22(5):230–236.
   PubMedGoogle Scholar
• Pinquart M, Sörensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2003;58(2):P112–P128.
   PubMed Web of Science ®Google Scholar
• Stroup DF, Berlin JA, Morton SC, et al. Meta-analysis of observational studies in epidemiology: a proposal for reporting. Meta-analysis of observational studies in epidemiology (MOOSE) group. JAMA. 2000;283(15):2008–2012.
   PubMed Web of Science ®Google Scholar
• Nolte E, McKee M. Caring for people with chronic conditions: an introduction. In: Nolte E, McKee M, editors. Caring for people with chronic conditions: a health system perspective. Berkshire (UK): Open University Press; 2008. p. 1–14.
   Google Scholar
• Bernell S, Howard SW. Use your words carefully: what is a chronic disease? Front Public Health. 2016;4(159):1–3.
   PubMedGoogle Scholar
• Hoy D, Brooks P, Woolf A, et al. Assessing risk of bias in prevalence studies: modification of an existing tool and evidence of interrater agreement. J Clin Epidemiol. 2012;65(9):934–939.
   PubMed Web of Science ®Google Scholar
• Bédard M, Molloy DW, Squire L, et al. The Zarit burden interview: a new short version and screening version. Gerontologist. 2001;41(5):652–657.
   PubMed Web of Science ®Google Scholar
• Vitaliano PP, Young HM, Russo J. Burden: a review of measures used among caregivers of individuals with dementia. Gerontologist. 1991;31(1):67–75.
   PubMed Web of Science ®Google Scholar
• Higginson IJ, Gao W, Jackson D, et al. Short-form Zarit caregiver burden interviews were valid in advanced conditions. J Clin Epidemiol. 2010;63(5):535–542.
   PubMed Web of Science ®Google Scholar
• DerSimonian R, Laird N. Meta-analysis in clinical trials. Control Clin Trials. 1986;7(3):177–188.
   PubMedGoogle Scholar
• Higgins JP, Thompson SG. Quantifying heterogeneity in a meta-analysis. Stat Med. 2002;21(11):1539–1558.
   PubMed Web of Science ®Google Scholar
• Balduzzi S, Rücker G, Schwarzer G. How to perform a meta-analysis with R: a practical tutorial. Evid Based Ment Health. 2019;22(4):153–160.
   PubMed Web of Science ®Google Scholar
• United Nations Development Programme. Human developments report: human development index (HDI) [Internet]. New York (NY): United Nations; 2020. Available from: http://hdr.undp.org/en/content/human-development-index-hdi
   Google Scholar
• van Buuren S, Groothuis-Oudshoorn K. MICE: multivariate imputation by chained equations in R. J Stat Softw. 2011;45(3):1–68.
   Web of Science ®Google Scholar
• Azur MJ, Stuart EA, Frangakis C, et al. Multiple imputation by chained equations: what is it and how does it work? Int J Methods Psychiatr Res. 2011;20(1):40–49.
   PubMed Web of Science ®Google Scholar
• Meng XL, Rubin DB. Performing likelihood ratio tests with multiply-imputed data sets. Biometrika. 1992;79(1):103–111.
   Web of Science ®Google Scholar
• Hemmati Maslakpak M, Torabi M, Radfar M, et al. The effect of psycho-educational intervention on the caregiver burden among caregivers of hemodialysis patients. J Res Dev Nurs Midw. 2019;16(1):14–25.
   Google Scholar
• Akkuş Y. Multiple sclerosis patient caregivers: the relationship between their psychological and social needs and burden levels. Disabil Rehabil. 2011;33(4):326–333.
   PubMed Web of Science ®Google Scholar
• Al Wakeel JS, Bayoumi MM. Caregiver burden among peritoneal dialysis and hemodialysis family in Saudi Arabia. Kuwait Med J. 2016;48(3):197–201.
   Web of Science ®Google Scholar
• Alvarez-Ude F, Valdés C, Estébanez C, et al. Health-related quality of life of family caregivers of dialysis patients. J Nephrol. 2004;17(6):841–850.
   PubMed Web of Science ®Google Scholar
• Badr H, Federman AD, Wolf M, et al. Depression in individuals with chronic obstructive pulmonary disease and their informal caregivers. Aging Ment Health. 2017;21(9):975–982.
   PubMed Web of Science ®Google Scholar
• Bajaj JS, Wade JB, Gibson DP, et al. The multi-dimensional burden of cirrhosis and hepatic encephalopathy on patients and caregivers. Am J Gastroenterol. 2011;106(9):1646–1653.
   PubMed Web of Science ®Google Scholar
• Bañobre González A, Vázquez Rivera J, Outeiriño Novoa S, et al. Efectividad de la intervención educativa en cuidadores de pacientes dependientes en diálisis y valoración de la carga [the effectiveness of educational intervention in carers of patients in dialysis and evaluation of the load]. Rev Soc Esp Enferm Nefrol. 2005;8(2):156–165. Spanish.
   Google Scholar
• Bayen E, Papeix C, Pradat-Diehl P, et al. Patterns of objective and subjective burden of informal caregivers in multiple sclerosis. Behav Neurol. 2015;2015:648415.
   PubMed Web of Science ®Google Scholar
• Benavides O, Alburquerque D, Chaná-Cuevas P. Evaluación de la sobrecarga en los cuidadores de los pacientes con enfermedad de Parkinson ambulatorios y sus factores de riesgo [burden among caregivers of patients with Parkinson disease]. Rev Méd Chile. 2013;141(3):320–326. Spanish.
   PubMed Web of Science ®Google Scholar
• Bentley B, O’Connor M, Breen LJ, et al. Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease. BMC Palliat Care. 2014;13(1):12–19.
   PubMedGoogle Scholar
• Bolden L, Wicks MN. Predictors of mental health, subjective burden, and rewards in family caregivers of patients with chronic liver disease. Arch Psychiatr Nurs. 2010;24(2):89–103.
   PubMed Web of Science ®Google Scholar
• Bozkurt Zincir S, Sunbul M, Zincir S, et al. Burden and depressive symptoms associated with adult-child caregiving for individuals with heart failure. Scientific World Journal. 2014;2014:641817.
   Google Scholar
• Buhse M, Della Ratta C, Galiczewski J, et al. Caregivers of older persons with multiple sclerosis: determinants of health-related quality of life. J Neurosci Nurs. 2015;47(2):E2–E12.
   PubMed Web of Science ®Google Scholar
• Burke T, Hardiman O, Pinto-Grau M, et al. Longitudinal predictors of caregiver burden in amyotrophic lateral sclerosis: a population-based cohort of patient-caregiver dyads. J Neurol. 2018;265(4):793–808.
   PubMed Web of Science ®Google Scholar
• Cain CJ, Wicks MN. Caregiver attributes as correlates of burden in family caregivers coping with chronic obstructive pulmonary disease. J Fam Nurs. 2000;6(1):46–68.
   Google Scholar
• Carmona Moriel CE, Nolasco Monterroso C, Navas Santos L, et al. Análisis de la sobrecarga del cuidador del paciente en diálisis peritoneal [analysis of caregiver burden in peritoneal dialysis patients]. Enferm Nefrol. 2015;18(3):180–188. Spanish.
   Google Scholar
• Carod-Artal FJ, Mesquita HM, Ziomkowski S, et al. Burden and health-related quality of life among caregivers of Brazilian Parkinson’s disease patients. Parkinsonism Relat Disord. 2013;19(11):943–948.
   PubMed Web of Science ®Google Scholar
• Carrilho PEM, Rodrigues MA, Oliveira BC, et al. Profile of caregivers of Parkinson’s disease patients and burden measured by Zarit scale analysis of potential burden-generating factors and their correlation with disease severity. Dement Neuropsychol. 2018;12(3):299–305.
   PubMedGoogle Scholar
• Castellano-Tejedor C, Lusilla-Palacios P. A study of burden of care and its correlates among family members supporting relatives and loved ones with traumatic spinal cord injuries. Clin Rehabil. 2017;31(7):948–956.
   PubMed Web of Science ®Google Scholar
• Chandran V, Madi D, Chowta N, 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.
   PubMed Web of Science ®Google Scholar
• Chung ML, Pressler SJ, Dunbar SB, et al. Predictors of depressive symptoms in caregivers of patients with heart failure. J Cardiovasc Nurs. 2010;25(5):411–419.
   PubMed Web of Science ®Google Scholar
• Coleman JA, Harper LA, Perrin PB, et al. Mind and body: mental health and health related quality of life in SCI caregivers from Neiva, Colombia. NeuroRehabilitation. 2015;36(2):223–232.
   PubMed Web of Science ®Google Scholar
• Dorsey ER, Deuel LM, Beck CA, et al. Group patient visits for Parkinson’s disease: a randomized feasibility trial. Neurology. 2011;76(18):1542–1547.
   PubMed Web of Science ®Google Scholar
• Ertekin Ö, Özakbaş S, Idiman E. Caregiver burden, quality of life and walking ability in different disability levels of multiple sclerosis. NRE. 2014;34(2):313–321.
   Google Scholar
• Etemadifar S, Bahrami M, Shahriari M, et al. The effectiveness of a supportive educative group intervention on family caregiver burden of patients with heart failure. Iran J Nurs Midwifery Res. 2014;19(3):217–223.
   PubMedGoogle Scholar
• Fernández-García S, Represas-Represas C, Ruano-Raviña A, et al. Perfil social de los pacientes que ingresan por una agudización de EPOC. Un análisis desde una perspectiva de género [social profile of patients admitted for COPD exacerbations. A gender analysis]. Arch Bronconeumol. 2020;56(2):84–89. Spanish.
   PubMedGoogle Scholar
• Geng D, Ou R, Miao X, et al. Patients’ self-perceived burden, caregivers’ burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study. J Clin Nurs. 2017;26(19–20):3188–3199. Patients’
   PubMed Web of Science ®Google Scholar
• Göriş S, Klç Z, Elmal F, et al. Care burden and social support levels of caregivers of patients with chronic obstructive pulmonary disease. Holist Nurs Pract. 2016;30(4):227–235.
   PubMed Web of Science ®Google Scholar
• Grün D, Pieri V, Vaillant M, et al. Contributory factors to caregiver burden in Parkinson disease. J Am Med Dir Assoc. 2016;17(7):626–632.
   PubMed Web of Science ®Google Scholar
• Griva K, Goh CS, Kang WC, et al. Quality of life and emotional distress in patients and burden in caregivers: a comparison between assisted peritoneal dialysis and self-care peritoneal dialysis. Qual Life Res. 2016;25(2):373–384.
   PubMed Web of Science ®Google Scholar
• Hagell P, Alvariza A, Westergren A, et al. Assessment of burden among family caregivers of people with Parkinson’s disease using the Zarit burden interview. J Pain Symptom Manage. 2017;53(2):272–278.
   PubMed Web of Science ®Google Scholar
• Han SH, Kim B, Lee SA. Contribution of the family environment to depression in Korean adults with epilepsy. Seizure. 2015;25(2015):26–31.
   PubMedGoogle Scholar
• Hirakawa Y, Kuzuya M, Masuda Y, et al. Influence of diabetes mellitus on caregiver burden in home care: a report based on the Nagoya longitudinal study of the frail elderly (NLS-FE). Geriatr Gerontol Int. 2008;8(1):41–47.
   PubMed Web of Science ®Google Scholar
• Hooker SA, Schmiege SJ, Trivedi RB, et al. Mutuality and heart failure self-care in patients and their informal caregivers. Eur J Cardiovasc Nurs. 2018;17(2):102–113.
   PubMed Web of Science ®Google Scholar
• Hooley PJ, Butler G, Howlett JG. The relationship of quality of life, depression, and caregiver burden in outpatients with congestive heart failure. Congest Heart Fail. 2005;11(6):303–310.
   PubMedGoogle Scholar
• Hu X, Dolansky MA, Su Y, et al. Effect of a multidisciplinary supportive program for family caregivers of patients with heart failure on caregiver burden, quality of life, and depression: a randomized controlled study. Int J Nurs Stud. 2016;62(2016):11–21.
   PubMedGoogle Scholar
• Hu X, Dolansky MA, Hu X, et al. Factors associated with the caregiver burden among family caregivers of patients with heart failure in southwest China. Nurs Health Sci. 2016;18(1):105–112.
   PubMed Web of Science ®Google Scholar
• Jones AJ, Kuijer RG, Livingston L, et al. Caregiver burden is increased in Parkinson’s disease with mild cognitive impairment (PD-MCI). Transl Neurodegener. 2017;6:17–19.
   PubMed Web of Science ®Google Scholar
• Karakis I, Montouris GD, Piperidou C, et al. Patient and caregiver quality of life in psychogenic non-epileptic seizures compared to epileptic seizures. Seizure. 2014;23(1):47–54.
   PubMed Web of Science ®Google Scholar
• Kellner S, Morgan S, Gutierrez J, et al. Perceived embarrassment and caregiver burden in essential tremor caregivers. J Neurol Sci. 2017;383:205–210.
   PubMed Web of Science ®Google Scholar
• Kilic HF, Kaptanogullari H. A bicommunal study: burden of caregivers of hemodialysis patients. Int J Caring Sci. 2017;10(3):1382–1390.
   Google Scholar
• Kim MS, Shin H-I, Min Y, et al. [Correlation between severe ALS patient-caregiver couples’ characteristics and caregivers’ health related quality of life]. J Korean Acad Nurs. 2011;41(3):354–363.
   PubMed Web of Science ®Google Scholar
• Leroi I, Harbishettar V, Andrews M, et al. Carer burden in apathy and impulse control disorders in Parkinson’s disease. Int J Geriatr Psychiatry. 2012;27(2):160–166.
   PubMed Web of Science ®Google Scholar
• Ma HP, Lu HJ, Xiong XY, et al. The investigation of care burden and coping style in caregivers of spinal cord injury patients. Int J Nurs Sci. 2014;1(2):185–190.
   Google Scholar
• Malik FA, Gysels M, Higginson IJ. Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure. Palliat Med. 2013;27(7):647–656.
   PubMed Web of Science ®Google Scholar
• Martínez‐Martín P, Forjaz MJ, Frades‐Payo B, et al. Caregiver burden in Parkinson’s disease. Mov Disord. 2007;22(7):924–931.
   PubMed Web of Science ®Google Scholar
• Martínez‐Martin P, Arroyo S, Rojo‐Abuin JM, et al. Burden, perceived health status, and mood among caregivers of Parkinson’s disease patients. Mov Disord. 2008;23(12):1673–1680.
   PubMed Web of Science ®Google Scholar
• Martinez-Martin P, Rodriguez-Blazquez C, Forjaz MJ, et al. Neuropsychiatric symptoms and caregiver’s burden in Parkinson’s disease. Parkinsonism Relat Disord. 2015;21(6):629–634.
   PubMed Web of Science ®Google Scholar
• Mollaoğlu M, Kayataş M, Yürügen B. Effects on caregiver burden of education related to home care in patients undergoing hemodialysis. Hemodial Int. 2013;17(3):413–420.
   PubMed Web of Science ®Google Scholar
• Oh J, Kim JA. Factor analysis of the Zarit burden interview in family caregivers of patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19(1–2):50–56.
   PubMed Web of Science ®Google Scholar
• Ozdilek B, Gunal DI. Motor and non-motor symptoms in turkish patients with Parkinson’s disease affecting family caregiver burden and quality of life. J Neuropsychiatry Clin Neurosci. 2012;24(4):478–483.
   PubMed Web of Science ®Google Scholar
• Özmen S, Yurttaş A. Determination of care burden of caregivers of patients with multiple sclerosis in Turkey. Behav Neurol. 2018;2018:7205046.
   PubMed Web of Science ®Google Scholar
• Pagnini F, Rossi G, Lunetta C, et al. Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychol Health Med. 2010;15(6):685–693.
   PubMed Web of Science ®Google Scholar
• Pomponi M, Ricciardi L, La Torre G, et al. Patient’s loss of empathy is associated with caregiver burden. J Nerv Ment Dis. 2016;204(9):717–722.
   PubMed Web of Science ®Google Scholar
• Quig ME, Simsarian J, Cutter G, et al. MS CarePartner stress: a NARCOMS study. Mult Scler Quart Rep. 2007;26(1):6–10.
   Google Scholar
• Rivera-Navarro J, Benito-León J, Oreja-Guevara C, et al. Burden and health-related quality of life of spanish caregivers of persons with multiple sclerosis. Mult Scler. 2009;15(11):1347–1355.
   PubMed Web of Science ®Google Scholar
• Rodríguez-Violante M, Camacho-Ordoñez A, Cervantes-Arriaga A, et al. Factors associated with the quality of life of subjects with Parkinson’s disease and burden on their caregivers. Neurología. 2015;30(5):257–263.
   PubMed Web of Science ®Google Scholar
• Roy A, Minaya M, Monegro M, et al. Partner burden: a common entity in celiac disease. Dig Dis Sci. 2016;61(12):3451–3459.
   PubMed Web of Science ®Google Scholar
• Santos‐García D, de la Fuente‐Fernández R. Factors contributing to caregivers’ stress and burden in Parkinson’s disease. Acta Neurol Scand. 2015;131(4):203–210.
   PubMed Web of Science ®Google Scholar
• Schiehser DM, Liu L, Lessig SL, et al. Predictors of discrepancies in Parkinson’s disease patient and caregiver ratings of apathy, disinhibition, and executive dysfunction before and after diagnosis. J Int Neuropsychol Soc. 2013;19(3):295–304.
   PubMed Web of Science ®Google Scholar
• Schmotz C, Richinger C, Lorenzl S. High burden and depression among late-stage idiopathic Parkinson disease and progressive supranuclear palsy caregivers. J Geriatr Psychiatry Neurol. 2017;30(5):267–272.
   PubMed Web of Science ®Google Scholar
• Schulz R, Czaja SJ, Lustig A, et al. Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial. Rehabil Psychol. 2009;54(1):1–15.
   PubMed Web of Science ®Google Scholar
• Shah HB, Atif I, Rashid F, et al. Assessment of caregiver burden of patients receiving dialysis treatment in Rawalpindi. J Pak Med Assoc. 2017;67(10):1498–1501.
   PubMed Web of Science ®Google Scholar
• Shimoyama S, Hirakawa O, Yahiro K, et al. Health-related quality of life and caregiver burden among peritoneal dialysis patients and their family caregivers in Japan. Perit Dial Int. 2003;23(S2):S200–S205.
   PubMedGoogle Scholar
• Shin H, Lee JY, Youn J, et al. Factors contributing to spousal and offspring caregiver burden in Parkinson’s disease. Eur Neurol. 2012;67(5):292–296.
   PubMed Web of Science ®Google Scholar
• Sotoudeh R, Pahlavanzadeh S, Alavi M. The effect of a family-based training program on the care burden of family caregivers of patients undergoing hemodialysis. Iranian J Nursing Midwifery Res. 2019;24(2):144–150.
   PubMedGoogle Scholar
• Soulas T, Sultan S, Gurruchaga JM, et al. Changes in quality of life, burden and mood among spouses of Parkinson’s disease patients receiving neurostimulation. Parkinsonism Relat Disord. 2012;18(5):602–605.
   PubMed Web of Science ®Google Scholar
• Stewart M, Shaffer S, Murphy B, et al. Characterizing the high disease burden of transthyretin amyloidosis for patients and caregivers. Neurol Ther. 2018;7(2):349–364.
   PubMed Web of Science ®Google Scholar
• Sturkenboom IH, Graff MJ, Borm GF, et al. The impact of occupational therapy in Parkinson’s disease: a randomized controlled feasibility study. Clin Rehabil. 2013;27(2):99–112.
   PubMed Web of Science ®Google Scholar
• Teixidó-Planas J, Velasco LT, Suárez NA, et al. Carer’s burden of peritoneal dialysis patients. Questionnaire and scale validation. Nefrología. 2018;38(5):535–544.
   PubMed Web of Science ®Google Scholar
• Tessitore A, Marano P, Modugno N, et al. Caregiver burden and its related factors in advanced Parkinson’s disease: data from the PREDICT study. J Neurol. 2018;265(5):1124–1137.
   PubMed Web of Science ®Google Scholar
• Thomas PT, Warrier MG, Sadasivan A, et al. Caregiver burden and quality of life of patients with amyotrophic lateral sclerosis in India. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19(7–8):606–610.
   PubMed Web of Science ®Google Scholar
• Tokunaga S, Washio M, Miyabayashi I, et al. Burden among caregivers of Parkinson’s disease patients. Int Med J. 2009;16(2):83–86.
   Google Scholar
• Torny F, Videaud H, Chatainier P, et al. Factors associated with spousal burden in Parkinson’s disease. Rev Neurol. 2018;174(10):711–715.
   PubMedGoogle Scholar
• Tough H, Brinkhof MW, Siegrist J, et al. Subjective caregiver burden and caregiver satisfaction: the role of partner relationship quality and reciprocity. Arch Phys Med Rehabil. 2017;98(10):2042–2051.
   PubMed Web of Science ®Google Scholar
• Trivedi RB, Piette J, Fihn SD, et al. Examining the interrelatedness of patient and spousal stress in heart failure: conceptual model and pilot data. J Cardiovasc Nurs. 2012;27(1):24–32.
   PubMed Web of Science ®Google Scholar
• Washio M, Yoshida H, Ura N, et al. Burden among family caregivers of patients on chronic hemodialysis in Northern Japan. Int Med J. 2012;19(3):221–223.
   Google Scholar
• Wicks MN, Milstead EJ, Hathaway DK, et al. Subjective burden and quality of life in family caregivers of patients with end stage renal disease. Anna J. 1997;24(5):527–539.
   PubMedGoogle Scholar
• Wicks MN, Milstead EJ, Hathaway DK, et al. Family caregivers’ burden, quality of life, and health following patients’ renal transplantation. J Transpl Coord. 1998;8(3):170–176.
   PubMedGoogle Scholar
• Wong RK, Drossman DA, Weinland SR, et al. Partner burden in irritable bowel syndrome. Clin Gastroenterol Hepatol. 2013;11(2):151–155.
   PubMed Web of Science ®Google Scholar
• Cersonsky TE, Diaz DT, Kellner S, et al. Enfeeblement in elders with essential tremor: characterizing the phenomenon and its role in caregiver burden. Tremor Other Hyperkinet Mov. 2019;9:1–8.
   PubMed Web of Science ®Google Scholar
• Cañedo-Ayala M, Rice DB, Levis B, et al. Factors associated with symptoms of depression among informal caregivers of people with systemic sclerosis: a cross-sectional study. Disabil Rehabil. 2020;42(3):394–399.
   PubMed Web of Science ®Google Scholar
• Paschou A, Damigos D, Skapinakis P, et al. The relationship between burden and depression in spouses of chronic kidney disease patients. Depress Res Treat. 2018;2018:8694168.
   PubMedGoogle Scholar
• Tzitzika M, Lampridis E, Kalamaras D. Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis: relational commitment, caregiving burden, and prorelational behavioral tendencies. Int J MS Care. 2020;22(2):60–66.
   PubMedGoogle Scholar
• Yang Z, Tian Y, Fan Y, et al. The mediating roles of caregiver social support and self-efficacy on caregiver burden in Parkinson’s disease. J Affect Disord. 2019;256:302–308.
   PubMed Web of Science ®Google Scholar
• Zhang R, Pu C, Cui X, et al. Burden in primary family caregivers caring for uremic patients on maintenance peritoneal dialysis. Perit Dial Int. 2020;40(6):556– 557.
   PubMed Web of Science ®Google Scholar
• Hareendran A, Devadas K, Sreesh S, et al. Quality of life, caregiver burden and mental health disorders in primary caregivers of patients with cirrhosis. Liver Int. 2020;40(12):2939–2949.
   PubMed Web of Science ®Google Scholar
• Bagheri S, Valizadeh Zare N, Mazlom SR, et al. Effect of implementing family-centered empowerment model on burden of care in caregivers of the elderly with Parkinson’s disease. Evid Based Care. 2019;9(3):41–48.
   Google Scholar
• Farzi S, Farzi S, Moladoost A, et al. Caring burden and quality of life of family caregivers in patients undergoing hemodialysis: a descriptive-analytic study. Int J Community Based Nurs Midwifery. 2019;7(2):88–96.
   PubMedGoogle Scholar
• Ghasemi M, Arab M, Shahrbabaki PM. Relationship between caregiver burden and family functioning in family caregivers of older adults with heart failure. J Gerontol Nurs. 2020;46(6):25–33.
   PubMed Web of Science ®Google Scholar
• Kurauchi G, Endo M, Odaira K, et al. Caregiver burden and related factors among caregivers of patients with myotonic dystrophy type 1. J Neuromuscul Dis. 2019;6(4):527–536.
   PubMedGoogle Scholar
• Abed MA, Khalifeh AH, Khalil AA, et al. Functional health literacy and caregiving burden among family caregivers of patients with end-stage renal disease. Res Nurs Health. 2020;43(5):529–537.
   PubMed Web of Science ®Google Scholar
• Lai ST, Tan WY, Wo MC, et al. Burden in caregivers of adults with epilepsy in Asian families. Seizure. 2019;71(2019):132–139.
   PubMedGoogle Scholar
• Tan SB, Williams AF, Tan EK, et al. Parkinson’s disease caregiver strain in Singapore. Front Neurol. 2020;11(455):1–10.
   PubMedGoogle Scholar
• Hoang VL, Green T, Bonner A. Informal caregivers of people undergoing haemodialysis: associations between activities and burden. J Ren Care. 2019;45(3):151–158.
   PubMed Web of Science ®Google Scholar
• Çamur S, Batıbay SG, Bayram S. Effect of lower extremity amputation on caregiving burden in caregivers of patients with diabetic foot: prospective cohort study. Int Wound J. 2020;17(4):890–896.
   PubMed Web of Science ®Google Scholar
• Krch D. Emotional functioning in Huntington’s disease patients and its relation to caregiver experience [dissertation]. New York City (NY): City University of New York; 2008.
   Google Scholar
• Buitrago-Garcia D, Mendez I, Rodriguez F. Burden among caregivers in rheumatoid arthritis – a pilot study. Ann Rhem Dis. 2018;77:1857–1858.
   Google Scholar
• Deeks JJ, Higgins JPT, Altman DG, et al. Analysing data and undertaking meta-analyses. In: Higgins J, Thomas J, Chandler J, editors. Cochrane handbook for systematic reviews of interventions. Version 6.1. Oxford (UK): Cochrane Collaboration; 2020.
   Google Scholar
• Chiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: a systematic review. Int Nurs Rev. 2015;62(3):340–350.
   PubMed Web of Science ®Google Scholar
• Ge L, Mordiffi SZ. Factors associated with higher caregiver burden among family caregivers of elderly cancer patients: a systematic review. Cancer Nurs. 2017;40(6):471–478.
   PubMed Web of Science ®Google Scholar
• Rigby H, Gubitz G, Phillips S. A systematic review of caregiver burden following stroke. Int J Stroke. 2009;4(4):285–292.
   PubMed Web of Science ®Google Scholar
• van der Lee J, Bakker TJEM, Duivenvoorden HJ, et al. Multivariate models of subjective caregiver burden in dementia: a systematic review. Ageing Res Rev. 2014;15:76–93.
   PubMed Web of Science ®Google Scholar
• Galvin M, Corr B, Madden C, et al. Caregiving in ALS - a mixed methods approach to the study of Burden. BMC Palliat Care. 2016;15(1):81–82.
   PubMedGoogle Scholar
• Harding R, Gao W, Jackson D, et al. Comparative analysis of informal caregiver burden in advanced cancer, dementia, and acquired brain injury. J Pain Symptom Manage. 2015;50(4):445–452.
   PubMed Web of Science ®Google Scholar
• Hughes TB, Black BS, Albert M, et al. Correlates of objective and subjective measures of caregiver burden among dementia caregivers: influence of unmet patient and caregiver dementia-related care needs. Int Psychogeriatr. 2014;26(11):1875–1883.
   PubMed Web of Science ®Google Scholar
• Landfeldt E, Edström J, Buccella F, et al. Duchenne muscular dystrophy and caregiver burden: a systematic review. Dev Med Child Neurol. 2018;60(10):987–996.
   PubMed Web of Science ®Google Scholar
• van Beusekom I, Bakhshi-Raiez F, de Keizer NF, et al. Reported burden on informal caregivers of ICU survivors: a literature review. Crit Care. 2016;20(1):16–18.
   PubMedGoogle Scholar
• Katz S. Assessing self-maintenance: activities of daily living, mobility, and instrumental activities of daily living. J Am Geriatr Soc. 1983;31(12):721–727.
   PubMed Web of Science ®Google Scholar
• Core Outcomes Measures in Effectiveness Trials (COMET) [Internet]. Core Outcomes Measure in Effectiveness Trials initiative. [cited 2021 Aug 2]. Available from: http://www.comet-initiative.org/
   Google Scholar
• Drummond M, Johnston B, Quinn TJ. Measuring the success of interventions for caregivers: a focussed systematic review. Curr Opin Support Palliat Care. 2019;13(4):351–359.
   PubMed Web of Science ®Google Scholar