Identification of the needs of informal caregivers: an exploratory study

Authors

  • Rosa Noell Boix Research group on Methodology, Methods, Models and Outcomes of Health and Social Sciences (M3O). Faculty of Health Sciences and Welfare. Centre for Health and Social Care Research (CESS).University of Vic-Central University of Catalonia (UVIC-UCC), c/. Sagrada Família, 7, 08500 Vic, Spain b) Hospital Universitari de la Santa Creu de Vic, 08500 Vic, Barcelona, España. https://orcid.org/0000-0002-9443-2247
  • Mirari Ochandorena-Acha https://orcid.org/0000-0002-1101-9677
  • Gloria Reig-Garcia Facultat d’Infermeria, Universitat de Girona, 17003 Girona, España https://orcid.org/0000-0003-3893-4231
  • María Teresa Moreno-Casbas Unidad de Investigación en Cuidados y Servicios de Salud del Instituto de Salud Carlos III (Investén-isciii), Madrid, España https://orcid.org/0000-0001-9061-4628
  • Joan Carles Casas-Baroy Research group on Methodology, Methods, Models and Outcomes of Health and Social Sciences (M3O). Faculty of Health Sciences and Welfare. Centre for Health and Social Care Research (CESS).University of Vic-Central University of Catalonia (UVIC-UCC), c/. Sagrada Família, 7, 08500 Vic, Spain https://orcid.org/0000-0002-2021-8459
DOI: https://doi.org/10.6018/eglobal.512191
Keywords: Informal caregiver, care needs, qualitative investigation

Abstract

Introduction: Population aging is one of the main issues in public health within developed countries. Informal caregivers play a central role in this scenario, which can affect them negatively.
Objective: The aim of this study is to identify the needs of informal caregivers related to the care of dependent persons of a Basic Health Area.
Method: Qualitative and phenomenological study. Four informal caregivers in charge of non-institutionalized patients took part. These patients expressed their opinions in a semi-structured interview, that was deductively analyzed afterwards.
Results: The analysis showed three key subjects: the effects of caregiving (how this task negatively affects the global health of the caregivers); difficulties related to care (related to the process of adaptation once at home, prevention of wounds, accidents and mobility issues), and caregiving learning strategies (by deductive reasoning, observation and formation).
Conclusions: Caregiving has a negative effect on the caregivers’ global health. They show some difficulties in the execution of their tasks, and they declare that they are using various caregiving learning methods. Interventions directed at informal caregivers should include aspects related to health improvement and caregiving training.

Downloads

Download data is not yet available.

Author Biography

Mirari Ochandorena-Acha

Research group on Methodology, Methods, Models and Outcomes of Health and Social Sciences (M3O). Faculty of Health Sciences and Welfare. Centre for Health and Social Care Research (CESS).University of Vic-Central University of Catalonia (UVIC-UCC), c/. Sagrada Família, 7, 08500 Vic, Spain

References

Expansión. Esperanza de vida al nacer [Internet]. Available from: https://datosmacro.expansion.com/demografia/esperanza-vida

Frías-Osuna A, Moreno-Cámara S, Moral-Fernández L, Palomino-Moral PÁ, López-Martínez C, del-Pino-Casado R. [Motives and perceptions of family care for dependent elderly]. Aten primaria [Internet]. 2019 Dec 1 [cited 2022 Feb 22];51(10):637–44. Available from: https://pubmed.ncbi.nlm.nih.gov/30424899/

Moral-Fernández L, Frías-Osuna A, Moreno-Cámara S, Palomino-Moral PA, del-Pino-Casado R. Primeros momentos del cuidado: el proceso de convertirse en cuidador de un familiar mayor dependiente. Atención Primaria [Internet]. 2018 May 1 [cited 2022 Feb 22];50(5):282–90. Available from: https://www.elsevier.es/es-revista-atencion-primaria-27-articulo-primeros-momentos-del-cuidado-el-S0212656717302202

Akgun-Citak E, Attepe-Ozden S, Vaskelyte A, van Bruchem-Visser RL, Pompili S, Kav S, et al. Challenges and needs of informal caregivers in elderly care: Qualitative research in four European countries, the TRACE project. Arch Gerontol Geriatr [Internet]. 2020 Mar 1 [cited 2022 Feb 22];87:103971. Available from: https://pubmed.ncbi.nlm.nih.gov/31756568/

Palacios-Ceña D, León-Pérez E, Martínez-Piedrola RM, Cachón-Pérez JM, Parás-Bravo P, Velarde-García JF. Female family caregivers’ experiences during nursing home admission: A phenomenological qualitative study. J Gerontol Nurs [Internet]. 2019 Jun 1 [cited 2022 Feb 22];45(6):33–43. Available from: https://pubmed.ncbi.nlm.nih.gov/31135935/

Wool E, Shotwell JL, Slaboda J, Kozikowski A, Smith KL, Abrashkin K, et al. A Qualitative Investigation of the Impact of Home-Based Primary Care on Family Caregivers. J frailty aging [Internet]. 2019;8(4):210–4. Available from: https://pubmed.ncbi.nlm.nih.gov/31637408/

Organización Panamericana de la Salud, Organización Mundial de la Salud. Estrategia para la prevención y el control de las Enfermedades no Transmisibles, 2012-2025. 28° Conf Sanit Panam [Internet]. 2012;1:1–14. Available from: http://www1.paho.org/spanish/gov/csp/csp27.r10-s.pdf

Rogero-García J. Distribución en España del cuidado formal e informal a las personas de 65 y más años en situación de dependencia [Internet]. Revista Española de Salud Pública. 2009 [cited 2022 Feb 22]. Available from: https://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1135-57272009000300005

Madsen R, Birkelund R. ‘The path through the unknown’: the experience of being a relative of a dementia-suffering spouse or parent. J Clin Nurs [Internet]. 2013 Nov 1 [cited 2022 Feb 22];22(21–22):3024–31. Available from: https://onlinelibrary.wiley.com/doi/full/10.1111/jocn.12131

Liu S, Li C, Shi Z, Wang X, Zhou Y, Liu S, et al. Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer’s disease caregivers in China. J Clin Nurs [Internet]. 2017 May 1 [cited 2022 Feb 22];26(9–10):1291–300. Available from: https://pubmed.ncbi.nlm.nih.gov/27681477/

Harris PB. Dementia and friendship: the quality and nature of the relationships that remain. Int J Aging Hum Dev [Internet]. 2013 [cited 2022 Feb 22];76(2):141–64. Available from: https://pubmed.ncbi.nlm.nih.gov/23687798/

Moral-Fernández L, Frías-Osuna A, Moreno-Cámara S, Palomino-Moral PA, Del-Pino-Casado R. The start of caring for an elderly dependent family member: a qualitative metasynthesis. BMC Geriatr [Internet]. 2018 Sep 25 [cited 2022 Feb 22];18(1). Available from: https://pubmed.ncbi.nlm.nih.gov/30253750/

Ortiz Claro, Yirle Grecia; Lindarte Clavijo, Albeiro Antonio; Jimenz Sepulveda, Mónica Angely and Vega Angarita OM. Características sociodemográficas asociadas a la sobrecarga de los cuidadores de pacientes diabéticos en cúcuta [Internet]. Revista Cuidarte. 2013 [cited 2022 Feb 22]. p. 459–66. Available from: http://www.scielo.org.co/scielo.php?pid=S2216-09732013000100005&script=sci_abstract&tlng=es

Chaparro Díaz OL, Carrillo González GM, Sánchez Herrera B. La carga del cuidado en la enfermedad crónica en la díada cuidador familiar-receptor del cuidado. Investig en Enfermería Imagen y Desarro [Internet]. 2016;18(2):43. Available from: https://revistas.javeriana.edu.co/index.php/imagenydesarrollo/article/view/12136

Jennings LA, Reuben DB, Evertson LC, Serrano KS, Ercoli L, Grill J, et al. Unmet needs of caregivers of individuals referred to a dementia care program. J Am Geriatr Soc [Internet]. 2015 Feb 1 [cited 2022 Feb 22];63(2):282–9. Available from: https://pubmed.ncbi.nlm.nih.gov/25688604/

Green J, Thorogood N. Qualitative methods for health research. 4ta edició. London: Sage Publications; 2018.

Taylor, S.J.; Bogdan, R.; De Vault M. Introduction to Qualitative Research Methods: A Guidebook and Resource. 4th ed. Wiley Publications, editor. USA: Wiley Publications; 2015.

Bernaola-Sagardui I. Validation of the Barthel Index in the Spanish population. Enfermería Clínica (English Ed [Internet]. 2018 May 1 [cited 2022 Feb 22];28(3):210–1. Available from: /https://pubmed.ncbi.nlm.nih.gov/29397315/

Amblàs-Novellas J, Martori JC, Espaulella J, Oller R, Molist-Brunet N, Inzitari M, et al. Frail-VIG index: a concise frailty evaluation tool for rapid geriatric assessment. BMC Geriatr [Internet]. 2018 Jan 26 [cited 2022 Feb 22];18(1). Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5787254/

Mccann T V., Bamberg J, Mccann F. Family carers’ experience of caring for an older parent with severe and persistent mental illness. Int J Ment Health Nurs [Internet]. 2015 Jun 1 [cited 2022 Feb 22];24(3):203–12. Available from: https://pubmed.ncbi.nlm.nih.gov/25963281/

Asociación Médica Mundial. Declaración de Helsinki de la AMM – Principios éticos para las investigaciones médicas en seres humanos – WMA – The World Medical Association [Internet]. 2013 [cited 2020 Feb 27]. Available from: https://www.wma.net/es/policies-post/declaracion-de-helsinki-de-la-amm-principios-eticos-para-las-investigaciones-medicas-en-seres-humanos/

Noreña AL, Alcaraz-Moreno N, Rojas JG, Rebolledo-Malpica D. Aplicabilidad de los criterios de rigor y éticos en la investigación cualitativa. Aquichan [Internet]. 2012;12(3):263–74. Available from: http://www.scielo.org.co/scielo.php?pid=S1657-59972012000300006&script=sci_abstract&tlng=es

Caputo A. The emotional experience of caregiving in dementia: Feelings of guilt and ambivalence underlying narratives of family caregivers. Dementia [Internet]. 2021 Oct 1 [cited 2022 Feb 22];20(7):2248–60. Available from: https://journals.sagepub.com/doi/10.1177/1471301221989604?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub++0pubmed

Wells JL, Hua AY, Levenson RW. Poor Disgust Suppression Is Associated with Increased Anxiety in Caregivers of People with Neurodegenerative Disease. Journals Gerontol Ser B Psychol Sci Soc Sci [Internet]. 2021 Sep 1 [cited 2022 Feb 22];76(7):1302. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8363043/

Tay DL, Ellington L, Towsley GL, Supiano K, Berg CA. Emotional expression in conversations about advance care planning among older adult home health patients and their caregivers. Patient Educ Couns [Internet]. 2021 Sep 1 [cited 2022 Feb 22];104(9):2232–9. Available from: https://pubmed.ncbi.nlm.nih.gov/33658140/

World Health Organization(WHO). World Health Organization(WHO) Definition Of Health - Public Health [Internet]. 2019 [cited 2022 Feb 22]. Available from: https://www.publichealth.com.ng/world-health-organizationwho-definition-of-health/

Kim H, Zhao Y, Kim N, Ahn YH. Home modifications for older people with cognitive impairments: Mediation analysis of caregivers’ information needs and perceptions of fall risks. Int J Older People Nurs [Internet]. 2019 Sep 1 [cited 2022 Feb 22];14(3):e12240. Available from: https://onlinelibrary.wiley.com/doi/full/10.1111/opn.12240

Kizza IB, Maritz J. Family caregivers for adult cancer patients: knowledge and self-efficacy for pain management in a resource-limited setting. Support Care Cancer [Internet]. 2019 Jun 1 [cited 2022 Feb 22];27(6):2265–74. Available from: https://pubmed.ncbi.nlm.nih.gov/30327878/

Chua GP, Ng QS, Tan HK, Ong WS. Caregivers of cancer patients: what are their information-seeking behaviours and resource preferences? Ecancermedicalscience [Internet]. 2020 [cited 2022 Feb 22];14. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7373639/

Sánchez-Huamash CM, Cárcamo-Cavagnaro C. Videos to improve the skills and knowledge of stroke patients’ caregivers. Rev Peru Med Exp Salud Publica [Internet]. 2021;38(1):41–8. Available from: https://pubmed.ncbi.nlm.nih.gov/34190922/

Published
01-10-2022
How to Cite
[1]
Noell Boix, R. et al. 2022. Identification of the needs of informal caregivers: an exploratory study. Global Nursing. 21, 4 (Oct. 2022), 71–99. DOI:https://doi.org/10.6018/eglobal.512191.
Issue
Section
ORIGINAL RESEARCH