A Comprehensive Assessment of Informal Caregivers of Patients in a Primary Healthcare Home-Care Program

Virginia Rodrigo-Baños, Marta Del Moral-Pairada, Luis González-de Paz, Virginia Rodrigo-Baños, Marta Del Moral-Pairada, Luis González-de Paz

Abstract

Studies of the characteristics of informal caregivers and associated factors have focused on care-receiver disease or caregiver social and psychological traits; however, an integral description may provide better understanding of informal caregivers' problems. A multicenter cross-sectional study in primary healthcare centers was performed in Barcelona (Spain). Participants were a random sample of informal caregivers of patients in a home-care program. Primary outcomes were health-related quality of life and caregiver burden, and related factors were sociodemographic data, clinical and risk factors, social support and social characteristics, use of healthcare services, and care receivers' status. In total, 104 informal caregivers were included (mean age 68.25 years); 81.73% were female, 54.81% were retired, 58.65% had high comorbidity, and 48.08% of care receivers had severe dependence. Adjusted multivariate regression models showed health-related quality of life and the caregivers' burden were affected by comorbidity, age, time of care, and dependency of care receiver, while social support and depression also showed relative importance. Aging, chronic diseases, and comorbidity should be included when explaining informal caregivers' health status and wellbeing. The effectiveness of interventions to support informal caregivers should comprehensively evaluate caregivers when designing programs, centering interventions on informal caregivers and not care receivers' conditions.

Keywords: caregivers; cross-sectional studies; elderly; home-care services; primary healthcare.

Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Flow chart of the inclusion process.

References

    1. OCDE Health at a Glance. 2019. [(accessed on 28 September 2021)]. Available online: .
    1. Eurostat Disability Statistics—Elderly Needs for Help or Assistance. [(accessed on 28 September 2021)]. Available online: .
    1. Bettio F., Plantenga J. Comparing Care Regimes in Europe. Fem. Econ. 2004;10:85–113. doi: 10.1080/1354570042000198245.
    1. Do E.K., Cohen S.A., Brown M.J. Socioeconomic and Demographic Factors Modify the Association between Informal Caregiving and Health in the Sandwich Generation. BMC Public Health. 2014;14:362–377. doi: 10.1186/1471-2458-14-362.
    1. Salvador-Piedrafita M., Malmusi D., Mehdipanah R., Rodríguez-Sanz M., Espelt A., Pérez C., Solf E., Abajo Del Rincón M., Borrell C. Views on the Effects of the Spanish Dependency Law on Caregivers’ Quality of Life Using Concept Mapping. Int. J. Health Serv. 2017;47:233–257. doi: 10.1177/0020731416685494.
    1. McGilton K.S., Vellani S., Yeung L., Chishtie J., Commisso E., Ploeg J., Andrew M.K., Ayala A.P., Gray M., Morgan D., et al. Identifying and Understanding the Health and Social Care Needs of Older Adults with Multiple Chronic Conditions and Their Caregivers: A Scoping Review. BMC Geriatr. 2018;18:231. doi: 10.1186/s12877-018-0925-x.
    1. Adelman R.D., Tmanova L.L., Delgado D., Dion S., Lachs M.S. Caregiver Burden: A Clinical Review. JAMA. 2014;311:1052–1060. doi: 10.1001/jama.2014.304.
    1. González-De Paz L., Real J., Borrás-Santos A., Martínez-Sánchez J.M., Rodrigo-Baños V., Dolores Navarro-Rubio M.D. Associations between Informal Care, Disease, and Risk Factors: A Spanish Country-Wide Population-Based Study. J. Public Health Policy. 2016;37:173–189. doi: 10.1057/jphp.2016.3.
    1. Ge L., Mordiffi S.Z. Factors Associated With Higher Caregiver Burden among Family Caregivers of Elderly Cancer Patients: A Systematic Review. Cancer Nurs. 2017;40:471–478. doi: 10.1097/NCC.0000000000000445.
    1. Ntsayagae E.I., Poggenpoel M., Myburgh C. Experiences of Family Caregivers of Persons Living with Mental Illness: A Meta-Synthesis. Curationis. 2019;42:e1–e9. doi: 10.4102/curationis.v42i1.1900.
    1. Frias C.E., Garcia-Pascual M., Montoro M., Ribas N., Risco E., Zabalegui A. Effectiveness of a Psychoeducational Intervention for Caregivers of People With Dementia with Regard to Burden, Anxiety and Depression: A Systematic Review. J. Adv. Nurs. 2020;76:787–802. doi: 10.1111/jan.14286.
    1. Lee G.B., Woo H., Lee S.Y., Cheon S.M., Kim J.W. The Burden of Care and the Understanding of Disease in Parkinson’s Disease. PLoS ONE. 2019;14:e0217581. doi: 10.1371/journal.pone.0217581.
    1. Leong K.W., Li L., Moga R., Bernstein M., Venkatraghavan L. Assessment of Caregiver Burden in Patients Undergoing In- and out-Patient Neurosurgery. J. Clin. Neurosci. 2021;88:83–87. doi: 10.1016/j.jocn.2021.03.035.
    1. Stacey A.F., Gill T.K., Price K., Taylor A.W. Differences in Risk Factors and Chronic Conditions between Informal (Family) Carers and Non-Carers Using a Population-Based Cross-Sectional Survey in South Australia. BMJ Open. 2018;8:e020173. doi: 10.1136/bmjopen-2017-020173.
    1. Peña-Longobardo L.M., del Río-Lozano M., Oliva-Moreno J., Larrañaga-Padilla I., García-Calvente M.D.M. Health, Work and Social Problems in Spanish Informal Caregivers: Does Gender Matter? (The Cuidar-Se Study) Int. J. Environ. Res. Public Health. 2021;18:7332. doi: 10.3390/ijerph18147332.
    1. Rodríguez-González A.M., Rodríguez-Míguez E., Duarte-Pérez A., Díaz-Sanisidro E., Barbosa-Álvarez Á., Clavería A. Cross-Sectional Study of Informal Caregiver Burden and the Determinants Related to the Care of Dependent Persons. Aten. Primaria. 2017;49:156–165. doi: 10.1016/j.aprim.2016.05.006.
    1. Hernández Gómez M.A., Fernández Domínguez M.J., Blanco Ramos M.A., Alves Pérez M.T., Fernández Domínguez M.J., Souto Ramos A.I., González Iglesias M.P., Clavería Fontán A. Depression and Burden in the Caretaking of Elderly. Rev. Esp. Salud Publica. 2019;93:e201908038.
    1. Orfila F., Coma-Solé M., Cabanas M., Cegri-Lombardo F., Moleras-Serra A., Pujol-Ribera E. Family Caregiver Mistreatment of the Elderly: Prevalence of Risk and Associated Factors. BMC Public Health. 2018;18:167. doi: 10.1186/s12889-018-5067-8.
    1. International Conference on Primary Health Care . Declaration of Alma-Ata. World Health Organization & UNICEF; Alma-Ata, USSR: 1978. [(accessed on 3 November 2021)]. Available online: .
    1. Chan M. Return to Alma-Ata. Lancet. 2008;372:865–866. doi: 10.1016/S0140-6736(08)61372-0.
    1. World Health Organization The World Health Report 2008—Primary Health Care (Now More Than Ever) [(accessed on 3 November 2021)]. Available online: .
    1. Navarro López V., Martín-Zurro A. In: La Atención Primaria de Salud En España y Sus Comunidades Autónomas. Violán Fors C., editor. Sociedad Española de Medicina de Familia y Comunitaria (SEMFyC); Barcelona, Spain: 2009.
    1. Gené-Badia J., Ascaso C., Escaramis-Babiano G., Sampietro-Colom L., Catalán-Ramos A., Sans-Corrales M., Pujol-Ribera E. Personalised Care, Access, Quality and Team Coordination Are the Main Dimensions of Family Medicine Output. Fam. Pract. 2007;24:41–47. doi: 10.1093/fampra/cml056.
    1. Contel J.C., Badia J., Peya M. Atencion Domiciliaria: Organizacion y Practica. Ediciones Springer-Verlag; Barcelona, Spain: 1999.
    1. Consorci d’Atenció Primària de Salut Barcelona Esquerra Memòria. 2016. [(accessed on 24 September 2021)]. Available online: .
    1. Domingo-Salvany A., Bacigalupe A., Carrasco J.M., Espelt A., Ferrando J., Borrell C. Propuestas de Clase Social Neoweberiana y Neomarxista a Partir de La Clasificación Nacional de Ocupaciones 2011. Gac. Sanit. 2013;27:263–272. doi: 10.1016/j.gaceta.2012.12.009.
    1. Charlson M., Szatrowski T.P., Peterson J., Gold J. Validation of a Combined Comorbidity Index. J. Clin. Epidemiol. 1994;47:1245–1251. doi: 10.1016/0895-4356(94)90129-5.
    1. World Health Organization Noncommunicable Diseases: Risk Factors. [(accessed on 25 September 2021)]. Available online: .
    1. Rodríguez-Martos Dauer A., Gual Solé A., Llopis Llácer J.J. The “Standard Drink Unit” as a Simplified Record of Alcoholic Drink Consumption and Its Measurement in Spain. Med. Clin. 1999;112:446–450.
    1. Ware J.E., Kosinski M., Keller S.D. A 12-Item Short-Form Health Survey: Construction of Scales and Preliminary Tests of Reliability and Validity. Med. Care. 1996;34:220–233. doi: 10.1097/00005650-199603000-00003.
    1. Mahoney F., Barthel D.W. Functional Evaluation: The Barthel Index. Md. State Med. J. 1965;14:61–65.
    1. Wright J. Functional Independence Measure. In: Kreutzer Jeffrey S., DeLuca J., Bruce C., editors. Encyclopedia of Clinical Neuropsychology. Springer; New York, NY, USA: 2011. pp. 1112–1113.
    1. Broadhead W.E., Gehlbach S.H., de Gruy F.V., Kaplan B.H. The Duke-UNC Functional Social Support Questionnaire. Measurement of Social Support in Family Medicine Patients. Med. Care. 1988;26:709–723. doi: 10.1097/00005650-198807000-00006.
    1. Alarcón M., González-Montalvo J. La Escala Sociofamiliar de Gijón, Instrumento Útil En El Hospital General. Rev. Esp. Geriatr. Gerontol. 1998;33:175–179.
    1. Zarit S.H., Reever K.E., Bach-Peterson J. Relatives of the Impaired Elderly: Correlates of Feelings of Burden. Gerontology. 1980;20:649–655. doi: 10.1093/geront/20.6.649.
    1. Schmidt S., Vilagut G., Garin O., Cunillera O., Tresserras R., Brugulat P., Mompart A., Medina A., Ferrer M., Alonso J. Normas de Referencia Para El Cuestionario de Salud SF-12 Versión 2 Basadas En Población General de Cataluña. Med. Clin. 2012;139:613–625. doi: 10.1016/j.medcli.2011.10.024.
    1. Bellon Saameno J.A., Delgado S.A., Luna del Castillo J.D., Lardelli C.P. Validez y fiabilidad del cuestionario de apoyo social funcional Duke-UNC-11. Aten. Primaria. 1996;18:153–163.
    1. Zarit S.H., Todd P.A., Zarit J.M. Subjective Burden of Husbands and Wives as Caregivers: A Longitudinal Study. Gerontology. 1986;26:260–266.
    1. Hébert R., Bravo G., Préville M. Reliability, Validity and Reference Values of the Zarit Burden Interview for Assessing Informal Caregivers of Community-Dwelling Older Persons with Dementia. Can. J. Aging. 2000;19:494–507. doi: 10.1017/S0714980800012484.
    1. Martín M., Salvadó I., Nadal S., Miji L.C., Rico J.M., Lanz P. Adaptación Para Nuestro Medio de La Escala de Sobrecarga Del Cuidador (Caregiver Burden Interview) de Zarit. Rev. Gerontol. 1996;6:338–346.
    1. Bertrand P.V., Sakamoto Y., Ishiguro M., Kitagawa G. Akaike Information Criterion Statistics. J. R. Stat. Society. Ser. A Stat. Soc. 1988;151:567. doi: 10.2307/2983028.
    1. O’brien R.M. A Caution Regarding Rules of Thumb for Variance Inflation Factors. Qual. Quant. 2007;41:673–690. doi: 10.1007/s11135-006-9018-6.
    1. R Core Team . R: A Language and Environment for Statistical Computing. R Foundation for Statistical Computing Austria; Vienna, Austria: 2019.
    1. Etters L., Goodall D., Harrison B.E. Caregiver Burden among Dementia Patient Caregivers: A Review of the Literature. J. Am. Acad. Nurse Pract. 2008;20:423–428. doi: 10.1111/j.1745-7599.2008.00342.x.
    1. Stawnychy M.A., Teitelman A.M., Riegel B. Caregiver Autonomy Support: A Systematic Review of Interventions for Adults with Chronic Illness and Their Caregivers with Narrative Synthesis. J. Adv. Nurs. 2021;77:1667–1682. doi: 10.1111/jan.14696.
    1. Isac C., Lee P., Arulappan J. Older Adults with Chronic Illness—Caregiver Burden in the Asian Context: A Systematic Review. Patient Educ. Couns. 2021 doi: 10.1016/j.pec.2021.04.021.
    1. Riffin C., van Ness P.H., Wolff J.L., Fried T. Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers. J. Am. Geriatr. Soc. 2019;67:277–283. doi: 10.1111/jgs.15664.
    1. Lee Y., Bierman A., Penning M. Psychological Well-Being among Informal Caregivers in the Canadian Longitudinal Study on Aging: Why the Location of Care Matters. J. Gerontol. Ser. B Psychol. Sci. Soc. Sci. 2020;75:2207–2218. doi: 10.1093/geronb/gbaa159.
    1. Rodríguez-González A.M., Rodríguez-Míguez E. A Meta-Analysis of the Association between Caregiver Burden and the Dependent’s Illness. J. Women Aging. 2020;32:220–235. doi: 10.1080/08952841.2019.1700728.
    1. Liu Z., Heffernan C., Tan J. Caregiver Burden: A Concept Analysis. Int. J. Nurs. Sci. 2020;7:438–445. doi: 10.1016/j.ijnss.2020.07.012.
    1. Toribio-Díaz M.E., Medrano-Martínez V., Moltó-Jordá J.M., Beltrán-Blasco I. Characteristics of Informal Caregivers of Patients with Dementia in Alicante Province. Neurologia. 2013;28:95–102. doi: 10.1016/j.nrl.2012.03.010.
    1. Jefatura del Estado . Ley 39/2006, de 14 de Diciembre, de Promoción de La Autonomía Personal y Atención a Las Personas En Situaión de Dependencia. Boletín Oficial del Estado; Madrid, Spain: 2006. pp. 44142–44156.
    1. Gallo P., Gene-Badia J. Cuts Drive Health System Reforms in Spain. Health Policy. 2013;113:1–7. doi: 10.1016/j.healthpol.2013.06.016.
    1. The Law of Dependence: Breaches and Pending Duties Guàrdia Urbana de Barcelona. [(accessed on 22 September 2021)]. Ajuntament de Barcelona. Available online: .
    1. O’Shea E., Timmons S., O’Shea E., Irving K. Multiple Stakeholders’ Perspectives on Respite Service Access for People with Dementia and Their Carers. Gerontologist. 2019;59:e490–e500. doi: 10.1093/geront/gnz095.
    1. Peña-Longobardo L.M., Oliva-Moreno J., García-Armesto S., Hernández-Quevedo C. The Spanish Long-Term Care System in Transition: Ten Years since the 2006 Dependency Act. Health Policy. 2016;120:1177–1182. doi: 10.1016/j.healthpol.2016.08.012.
    1. Courtin E., Jemiai N., Mossialos E. Mapping Support Policies for Informal Carers across the European Union. Health Policy. 2014;118:84–94. doi: 10.1016/j.healthpol.2014.07.013.
    1. Maayan N., Soares-Weiser K., Lee H. Respite Care for People with Dementia and Their Carers. Cochrane Database Syst. Rev. 2014;1:CD004396. doi: 10.1002/14651858.CD004396.pub3.

Source: PubMed

Sponsorer og samarbejdspartnere

Medicinske tilstande

Narkotikainterventioner

3
Abonner