Questionnaire for assessment of informal caregiver burden: Integrative review

Authors

DOI:

https://doi.org/10.33448/rsd-v10i6.15883

Keywords:

Patient care; Caregivers; Surveys and questionnaires; Adult.

Abstract

Objective: To identify in the literature, the questionnaires for assessing the burden on informal caregivers. Method: Integrative review, conducted in the search strategies: CINAHL, Virtual Health Library, Web of Science and Scopus (Elsevier). Through the following research question: What are the informal caregiver burden assessment questionnaires available in the literature? The RAYYAN® software was used to import the data. Results: 292 works were found in the databases, of these fourteen included the revision. The studies used 44 assessment instruments, which analyzed depression, anxiety, quality of life, among others, elements that are directly or indirectly related to the burden of informal caregivers. The results were presented in the form of a table and the most used questionnaires to assess the burden of the informal caregiver among the 44 identified in the survey. Conclusion: Numerous instruments were identified that indirectly assessed the burden of the informal caregiver, however only six questionnaires aimed at assessing the burden of the informal caregiver.

References

Almeida, K. M. V., Toye, C., Silveira, L. V. A., Slatyer, S., Hill, K., & Jacinto, A. F. (2019). Assessment of functional health literacy in Brazilian carers of older people. Dement. Neuropsychol, 13(2), 180-186.

Alzahrani, S. H. Fallata, E. O., Alabdulwahab, M. A., Alsafi, W. A., & Bashawri, J. (2017). Assessment of the burden on caregivers of patients with mental disorders in Jeddah, Saudi Arabia. BMC Psychiatry, 17(1), 202-02.

Araújo, M. G. O. Dutra, M. O. M., Freitas, C. C. S. L., Guedes, T. G., Souza, F. S., & Baptista, R. S. (2019). Caring for the carer: quality of life and burden of female caregivers. Rev. Bras. Enferm, 72(3), 728-36.

Ballarin, M. L. G. S., Benedito, A. C., Krön, C. A., & Christovam, D. (2016). Perfil Sociodemográfico e Sobrecarga de Cuidadores Informais de Pacientes Assistidos em Ambulatório de Terapia Ocupacional. Cadernos de Terapia Ocupacional da UFSCar, 24(2), 315–321.

Bailes, C. O., Kelley, C. M., & Parker, N. M. (2016). Caregiver burden and perceived health competence when caring for family members diagnosed with Alzheimer’s disease and related dementia. Journal of the American Association of Nurse Practitioners, 28(10), 534- 540.

Bayen, E., Papeix, C., Pradat-Diehl, P., Lubetzki, C., & Joël, M.E. (2015). Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis. Behav Neurol, e648415.

Boaventura, L. C., Borges, H. C., & Ozaki, A. H. (2016). Avaliação da sobrecarga do cuidador de pacientes neurológicos cadeirantes adultos. Ciênc. saúde coletiva, 21(10), 3193-3202.

Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Secretaria de Gestão do Trabalho e da Educação na Saúde. Guia prático do cuidador. Brasília, 64 p., 2008.

Castro, L., Souza, D. N., Pereira, A., Santos, E., Lomeo, R., & Teixeira, H. (2016). Competências dos cuidadores informais familiares no autocuidado: Autoestima e suporte Social. Investigação Qualitativa em Saúde, 2, 1346-1355.

Coppetti, L.C., Girardon-Perlini, N. M. O., Andolhe, R. Dalmolin, A. Dapper, S. N., & Machado, L. G. (2020). Care skill and overload of the family caregiver of patients in cancer treatment. Texto contexto enferm. 29, e20180451.

Cova, I., Travi, N., Maggiore, L., Cucumo, V., Mariani, C., & Pomati, S. (2018). What are the caregivers’ needs on dementia care? An integrated qualitative and quantitative assessment. Neurological Sciences, 39(6), 1085-91.

E-provide. Entrevista Zarit Burden (2021). https://eprovide.mapi-trust.org/instruments/zarit-burden-interview

Galvão, C. M. (2006). Níveis de evidência. Acta Paul. Enferm, 19(2).

Galvin, M., Corr, B., Madden, C., Mays, I., McQuillan, R., Timonen, V., Staines, A. & Hardiman, O. (2016). Caregiving in ALS – a mixed methods approach to the study of Burden. BMC Palliative Care, 15(1),81.

Gbiri, C. A., Olawale, O. A., & Isaac, S. O. (2015). Stroke management: Informal caregivers burdens and strians of caring for stroke survivors. Ann Phys Rehabil Med, 58(2), 98-103.

Grün, D., Pieri, V., Vaillant, M., & Diederich, N. J. (2016). Contributory Factors to Caregiver Burden in Parkinson Disease. Journal of the American Medical Directors Association, 17(7), 626-32.

Häikiö, K., Cloutier, D., & Rugkåsa, J. (2020). Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia? PLoS ONE, 15(11), e0241982.

Hoang, V., Green, T., & Bonner, A. (2019). Informal caregivers of people undergoing haemodialysis: Associations between activities and burden. J Ren Care, 45(3),151-8.

Holm, M. Årestedt, K., Carlander, I., Fürst, C. J., Wengström, Y., Öhlen, J., & Alvariza A. (2015). Short-term and long-term effects of a psycho-educational group intervention for family caregivers in palliative home care – results from a randomized control trial. Psycho-Oncology, 25(7), 795-802.

Konerding, U., Bowen, T., Forte, P., Karampli, E., Malmström, T., Pavi, E., Torkki, P., & Graessel, E. (2019). Do Caregiver Characteristics Affect Caregiver Burden Differently in Different Countries? American Journal of Alzheimer’s Disease & Other Dementias, 34(3), 148-52.

Langenberg, S. M. C. H., Reyners, A. K. L., Wymenga, A.N.M., Sieling, G. C. M., Veldhoven, C. M. M., van Herpen, C. M. L., Prins, J. B., & van der Graaf, W. T. A. (2019). Caregivers of patients receiving long-term treatment with a tyrosine kinase inhibitor (TKI) for gastrointestinal stromal tumour (GIST): a cross-sectional assessment of their distress and burden. Acta Oncol, 58(2), 191-9.

Maitan, P., Frigerio, S., Conti, A., Clari, M., Vellone, E., & Alvaro, R. (2018). The effect of the burden of caregiving for people with spinal cord injury (SCI): a cross-sectional study. Ann Ist Super Sanita, 54(3), 185-93.

Melo, R. M. C., Rua, M. S., & Santos, C. S. V. B. (2014). Necessidades do cuidador familiar no cuidado à pessoa dependente: uma revisão integrativa da literatura. Revista de Enfermagem Referencia, 4(4), 143-151.

Mendes, K. D. S., Silveira, R. C. C. P., Galvão, C. M. (2008). Revisão integrativa: método de pesquisa para incorporação de evidências na saúde e na enfermagem. Texto Contexto Enferm, 17(4), 758-64.

Mohammad, H. N., Walter, A. W., van Oijen, M. G. H., Hulshof, M. C. C. M., Bergman, J. J. G. H. M., Anderegg, M. C. J., van Berge Henegouwen, M. I.,

Henselmans, I., Sprangers, M. A. G. & van Laarhoven, H. W. M. (2015). Burden of spousal caregivers of stage II and III esophageal cancer survivors 3 years after treatment with curative intent. Support Care Cancer, 23(12), 3589–98.

Moher, D., Liberati, A., Tetzlaff, J., & Altman, D.G. (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The Prisma Statement. PlosMed, 6(7), e1000097.

Mora-Castañeda, B., Márquez-González, M., Fernández-Liria, A., Espriella, R., & Torres, N. Borrero, A. A. (2018). Clinical and Demographic Variables Associated Coping and the Burden of Caregivers of Schizophrenia Patients. Rev Colomb Psiquiatr, 47(1), 13-20.

Ouzzani, M., Hammady, H., Fedorowicz, Z., & Elmagarmid, A. (2016). Rayyan – a web and mobile app for systematic reviews. Systematic Reviews, 5, 210.

Ramos-Campos, M., Redolat, R., & Mesa-Gresa, P. The mediational role of burden and perceived stress in subjective memory complaints in informal cancer caregivers. Int J Environ Res Saúde Pública, 17(7), 2020.

Reed, C., Barrett, A., Lebrec, J., Dodel, R., Jones, R. W., Vellas, B., Wimo, A., Argimon, J. M., Bruno, G. & Haro, J. M. (2017). How Useful is The Eq-5D in assessing the impact of caring for people with Alzheimer’s disease? Health and Quality of Life Outcomes, 15(16), 1-9.

Revilla-Ahumada, L. L., de los Rios-Álvarez, A., Prados-Quel, M. A., Rodríguez-Navarro, J. L., & Calvo-Tudela, P. (2020). Factores relacionados con la sobrecarga que intervienen sobre la salud, las actividades económicas, laborales y sociales de los cuidadores principales de pacientes crónicos. Semergen, 46(5), 297-305.

Sanches, R. C. N. (2019). Construção e validação de questionário de avaliação das competências do cuidador informal. Tese de doutorado, Universidade Estadual de Maringá, Maringá, PR, Brasil.

Souza, A. C., Alexandre, N. M. C., & Guirardello, E. B. (2017). Propriedades psicométricas na avaliação de instrumentos: avaliação de requisitos e validade. Epidemiologia e Serviços de Saúde, 26(3), 649-59.

Sutter, M., Perrin, P. B., Peralta, S. V., Stolfi, M. E., Morelli, E., Obeso, L. A. P., & Arango-Lasprilla, J. C. (2016). Beyond strain: personal strengths and mental health of Mexican and Argentinean dementia caregivers. Journal of Transcultural Nursing, 27(4), 376–384.

Vaingankar, J. A., Chong, S. A., Abdin, E., Picco, L., Jeyagurunathan, A., Zhang, Y., Sambasivam, R., Chua, B. Y., Ng, L. L., Prince, M. & Subramaniam, M. (2015). Care participation and burden among informal caregivers of older adults with care needs and associations with dementia. International Psychogeriatrics, 28(2), 221-31.

Published

06/06/2021

How to Cite

CORREIA, E. T. .; SANTOS, F. G. T. dos .; RODRIGUES, T. F. C. da S. .; ZULIN, A.; RADOVANOVIC, C. A. T. . Questionnaire for assessment of informal caregiver burden: Integrative review. Research, Society and Development, [S. l.], v. 10, n. 6, p. e43310615883, 2021. DOI: 10.33448/rsd-v10i6.15883. Disponível em: https://rsdjournal.org/index.php/rsd/article/view/15883. Acesso em: 18 apr. 2024.

Issue

Section

Health Sciences