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FACTORS RELATED TO BURDEN AND SELF-CARE FOR HYPERTENSION IN FAMILY CAREGIVERS

ABSTRACT

Objective:

To identify factors related to burden and self-care for hypertension in family caregivers.

Method:

an online, cross-sectional survey of 68 family caregivers of elderly people, carried out between December 2021 and February 2022 in Brazil. Questionnaires on caregiver activity, the Informal Caregiver Burden Assessment Questionnaire and the Hypertension Self-Care Scale were applied. Descriptive and analytical analyses were carried out.

Results:

caregivers who lived with the elderly (p=0.0006) and had no rest day (p=0.0097) showed greater burden. The longer the time as a caregiver (p=0.0411), the lower the score in the domain of self-care management measures during blood pressure decompensation. Caregivers who received help from someone else (p=0.0379) had a higher score in the domain of the patient’s degree of confidence in self-care related to hypertension.

Conclusion:

This study contributes to a better understanding of the variables relating to caregiver activity related to burden and self-care for hypertension among caregivers of elderly people.

DESCRIPTORS:
Caregivers; Hypertension; Elderly; Geriatric Nursing; Burnout; Professional.

RESUMO

Objetivo:

identificar os fatores relacionados à sobrecarga e ao autocuidado para hipertensão em cuidadores familiares.

Método:

pesquisa online e transversal, com 68 cuidadores familiares de pessoas idosas, realizada entre dezembro de 2021 e fevereiro de 2022, no Brasil. Foram aplicados questionários sobre atividade de cuidador, Questionário de Avaliação da Sobrecarga do Cuidador Informal e Escala Autocuidado de Hipertensão. Foram realizadas análises descritivas e analíticas.

Resultados:

cuidadores que residiam com idoso (p=0,0006) e sem dia de descanso (p=0,0097) apresentaram maior sobrecarga. Quanto maior o tempo como cuidador (p=0,0411), menor o escore do domínio medidas de manejo do autocuidado durante a descompensação pressórica. Cuidadores que recebiam auxílio de outra pessoa (p=0,0379) apresentaram maior escore no domínio grau de confiança do paciente para o autocuidado relacionado à hipertensão.

Conclusão:

este estudo contribui para maior compreensão das variáveis referentes à atividade de cuidador relacionada à sobrecarga e ao autocuidado para hipertensão de cuidadores de pessoas idosas.

DESCRITORES:
Cuidadores; Hipertensão; Idoso; Enfermagem Geriátrica; Esgotamento Profissional.

RESUMEN

Objetivo:

identificar los factores relacionados con la carga y el autocuidado de la hipertensión en cuidadores familiares. Material y método: encuesta transversal online a 68 cuidadores familiares de ancianos, realizada entre diciembre de 2021 y febrero de 2022 en Brasil. Se aplicaron cuestionarios sobre la actividad del cuidador, el Cuestionario de Evaluación de la Carga del Cuidador Informal y la Escala de Autocuidado de la Hipertensión. Se realizaron análisis descriptivos y analíticos.

Resultados:

los cuidadores que vivían con el anciano (p=0,0006) y no tenían día de descanso (p=0,0097) mostraron mayor carga. Cuanto mayor era el tiempo como cuidador (p=0,0411), menor era la puntuación en el dominio de las medidas de gestión del autocuidado durante la descompensación por presión. Los cuidadores que recibían ayuda de otra persona (p=0,0379) tenían una puntuación más alta en el dominio del grado de confianza del paciente en el autocuidado relacionado con la hipertensión.

Conclusión:

Este estudio contribuye a una mayor comprensión de las variables relativas a la actividad del cuidador relacionadas con la carga y el autocuidado de la hipertensión de los cuidadores de personas mayores.

DESCRIPTORES:
Cuidadores; Hipertensión; Anciano; Enfermería Geriátrica; Agotamiento Profesional.

HIGHLIGHTS

  1. Work overload is related to damage to the caregiver’s self-care.

  2. Caregivers in this study had inadequate self-care.

  3. Living with the elderly and caring for them continuously is related to greater overload.

  4. Building health strategies that favor the needs of the caregiver.

HIGHLIGHTS

  1. Work overload is related to damage to the caregiver’s self-care.

  2. Caregivers in this study had inadequate self-care.

  3. Living with the elderly and caring for them continuously is related to greater overload.

  4. Building health strategies that favor the needs of the caregiver.

INTRODUCTION

According to the World Health Organization (WHO), the number of people aged over 60 in 2015 was 900 million, a figure that will reach two billion by 2050, with 434 million aged 80 or over101 World Health Organization. Ageing and health. Geneva:WHO. [Internet]. 2018 [cited 2022 Aug. 26]. Available from: https://www.who.int/news-room/fact-sheets/detail/ageing-and-health
https://www.who.int/news-room/fact-sheet...
. In Brazil, the fifth-largest elderly population in the world, there are around 28 million people aged 60 or over. It is estimated that, by 2030, this number will exceed that of children aged 0 to 14202 Brazilian Institute of Geography and Statistics (IBGE). Continuous National Household Sample Survey. Population projections [Internet]. 2018 [cited 2022 Aug 26]. Available from: https://www.ibge.gov.br/estatisticas-novoportal/sociais/populacao/9109-projecaoda-populacao.html?=&t=downloads
https://www.ibge.gov.br/estatisticas-nov...
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In recent decades, improvements in the quality of health care and the consequent increase in life expectancy have been associated with an increase in the elderly population and a reduction in late-life mortality. However, there has been an increase in multimorbidity due to the morphophysiological changes resulting from the aging process, with an increase in the prevalence of chronic diseases, which can contribute to causing or worsening the state of dependence of the elderly and imply a greater demand for long-term care303 Tana C, Lauretani F, Ticinesi A, Gionti L, Nouvenne A, Prati B, et al. Impact of nutritional status on caregiver burden of elderly outpatients. A cross-sectional study. Nutrients. [Internet]. 2019 [cited 2022 Aug 26]; 11(2):281. Available from: https://doi.org/10.3390/nu11020281
https://doi.org/10.3390/nu11020281...
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In 1999, the National Health Policy for the Elderly (PNSI, in Portuguese) defined a caregiver as a person who provides care for the elderly, sick or dependent in carrying out their daily activities404 Ministry of Health (BR). Ordinance n. 1395, of December 9, 1999. Provides for the National Health Policy for the Elderly. Official Gazette of the Federative Republic of Brazil. 1999 Dec. 10; Section 1. p. 20-24.. In Brazil, the number of family members dedicated to caring for the elderly jumped from 3.7 million in 2016 to 5.1 million in 2019, according to the Continuous National Household Sample Survey (PNAD-C 2019)1919 Bazílio GS, Guimarães RA, Ribeiro GMP, Morais FO, Yamamoto RKR, Bernal RTI. Prevalence and factors associated with arterial hypertension in adults living in Senador Canedo, Goiás, Brazil: a population-based study, 2016. Epidemiol Serv Saude. [Internet]. 2021 [cited 2022 Sept 05]; 30(1):e2019311. Available from: https://doi.org/10.1590/S1679-49742021000100009
https://doi.org/10.1590/S1679-4974202100...
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Family caregivers generally help the elderly person and have various responsibilities, such as supervision, medication administration, mobilization, hygiene and psychological support303 Tana C, Lauretani F, Ticinesi A, Gionti L, Nouvenne A, Prati B, et al. Impact of nutritional status on caregiver burden of elderly outpatients. A cross-sectional study. Nutrients. [Internet]. 2019 [cited 2022 Aug 26]; 11(2):281. Available from: https://doi.org/10.3390/nu11020281
https://doi.org/10.3390/nu11020281...
. The result of the caregiver’s duties can generate stressful events, suffering and damage to their well-being and self-care. The burden of caring can include physical, psychological, and financial difficulties606 Riffin C, Van Ness PH, Wolff JL, Fried T. Family and other unpaid caregivers and older adults with and without dementia and disability. J Am Geriatr Soc. [Internet]. 2017 [cited 2022 Aug 28]; 65(8):1821-28. Available from: https://doi.org/10.1111/jgs.14910
https://doi.org/10.1111/jgs.14910...
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Overload is defined as the effect of the individual’s transformations in relation to the family, originating in the subsequent need for care and supervision707 Aires M, Fuhrmann AC, Mocellin D, Dal Pizzol FLF, Sponchiado LF, Marchezan CR, et al. Burden of informal caregivers of dependent elderlies in the community in small cities. Rev Gaúcha Enferm. [Internet]. 2020 [cited 2022 Aug 26]; 41(esp):e20190156. Available from: https://doi.org/10.1590/1983-1447.2020.20190156
https://doi.org/10.1590/1983-1447.2020.2...
. When caring for elderly people, many caregivers experience restrictions in their personal and professional lives, with a reduction in leisure activities and a deficit in self-care, due to lack of time or motivation. This process can cause wear and tear, compromising the quality of care provided, family relationships and self-care707 Aires M, Fuhrmann AC, Mocellin D, Dal Pizzol FLF, Sponchiado LF, Marchezan CR, et al. Burden of informal caregivers of dependent elderlies in the community in small cities. Rev Gaúcha Enferm. [Internet]. 2020 [cited 2022 Aug 26]; 41(esp):e20190156. Available from: https://doi.org/10.1590/1983-1447.2020.20190156
https://doi.org/10.1590/1983-1447.2020.2...
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Self-care in health refers to the activities that individuals, families and society carry out to promote health, prevent disease, reduce health problems, and restore health808 Oliveira SCC, Moura PR. Reflective analysis of the self-care ability of home caregivers. Rev Fac Ciênc Méd Sorocaba. [Internet]. 2017 [cited 2022 Aug 26]; 19(1):15-8. Available from: https://dx.doi.org/10.5327/Z1984-4840201727022
https://dx.doi.org/10.5327/Z1984-4840201...
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According to the WHO, hypertension affects 20-40% of the adult population and is one of the most prevalent public health problems, mainly due to the complexity of the resources needed to control it and the impact on the population’s health909 World Health Organization. Pan American Health Organization. Hypertension. Pan American Health Organization. [Internet]. 2018 [cited 2022 Aug 26]. Available from: https://www.paho.org/hq/index.php?option=com_topics&view=article&id=221&Itemid=40878⟨=en
https://www.paho.org/hq/index.php?option...
. It is considered one of the major risk factors for the development of cardiovascular and cerebrovascular diseases, which are important causes of morbidity and mortality, as well as having a high social cost. Despite the risks presented by hypertension, adherence to drug and non-drug therapy is inefficient, posing a challenge to health services and public policies, since most hypertensive patients do not keep their blood pressure under control due to low adherence to treatment1010 Fiório CE, Cesar CLG, Alves MCGP, Goldbaum M. Prevalence of hypertension in adults in the city of São Paulo and associated factors. Rev bras epidemiol. [Internet]. 2020 [cited 2022 Aug. 26]; 23:e200052. Available from: https://doi.org/10.1590/1980-549720200052
https://doi.org/10.1590/1980-54972020005...
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In Brazil, however, the relationship between burden and the domains of self-care for hypertension, with variables relating to the caregiver’s sociodemographic and clinical activity, has not been fully clarified. Knowing this relationship could support the planning of multidisciplinary interventions aimed at controlling hypertension, avoiding health problems for the caregiver, and contributing to the continuity of care for the elderly.

The objective of this study was to identify factors related to burden and self-care for hypertension in family caregivers.

METHOD

Quantitative, online, cross-sectional survey. The Google Forms® tool was used to create online instruments, distributed through a public call via a link on social media (WhatsApp®, Facebook® and Instagram®). The process used to select the caregivers included in the sample was by convenience, during the data collection period from December 2021 to February 2022, thus composing the final sample of 68 hypertensive family caregivers. The Strengthening the Reporting of Observational studies in Epidemiology statement (STROBE)1111 Von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP, et al. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. J Clin Epidemiol. [Internet]. 2008 [cited 2022 Sept 02]; 61(4):344-9. Available from: https://doi.org/10.1016/j.jclinepi.2007.11.008
https://doi.org/10.1016/j.jclinepi.2007....
recommendations were used.

Family members of the elderly people they were caring for were included if they had a diagnosis of hypertension and were taking antihypertensive medication, and if they had been working as caregivers for at least three months, which was considered an appropriate time to incorporate the guidelines and practice caregiving1212 Dickon VV, Lee C, Yehle KS, Abel WM, Riegel B. Psychometric testing od the Self-care of Hypertension Inventory. J. Cardiovasc Nurs. [Internet]. 2017 [cited 2022 Sept 03]; 32(5):431-38. Available from: https://doi.org/10.1097/JCN.0000000000000364
https://doi.org/10.1097/JCN.000000000000...
. Family caregivers who received remuneration for their caregiving activities and who were under the age of 18 were excluded.

A graduate student in nursing disseminated the instruments online via a public call via a link on social media (WhatsApp®, Facebook® and Instagram®), without the need to identify the study participants. When accessing the link, the caregiver would access the Free and Informed Consent Form; if accepted, they would be directed to answer the online survey.

The instruments used were structured forms with the variables age, gender, schooling, marital status, occupation, income, comorbidities, and medication, and on caregiver activity (hours per day dedicated to care, whether they are the sole caregiver, whether they live with the elderly person, whether they share care with other people and whether they feel overburdened). The Hypertension Self-Care Scale assessed self-care capacity for hypertension. The scale has 23 items, which analyze the self-care of people with hypertension in the domains of maintenance (section A), self-care management (section B) and confidence (section C). The answers were given using a Likert scale, and the scores were calculated individually between the domains. The basis of the calculation was the sum of the questions in the section, subtracting the total number of questions in the section multiplied by the constant, where for section A, the sum was (-11 x 3.03), for section B, the sum was (-6 x 5.55), and for section C, the sum was (-6 x 5.55). In the self-care management domain (section B), there are two questions that are scored from 0 to 4; if the participant answers the equivalent of “0” in one or two of them, a total of five or four questions from this domain should be used, respectively. Self-care is considered adequate with scores equal to or greater than 701313 Friedman GD, Kannel WB, Dawber TR, McNamara PM. An evaluation of follow-up methods in the Framingham Heart Study. Am J Public Health Nations Health. [Internet]. 1967 [cited 2022 Sept 03]; 57(6):1015-24. Available from: https://doi.org/10.2105/ajph.57.6.1015
https://doi.org/10.2105/ajph.57.6.1015...

14 CCM Sergio, UAO Kaizer, ME Cornélio, RCM Rodrigues, TMS João. Self-care and cardiometabolic risk in people with high arterial pressure following primary care Saud Pesq. [Internet]. 2022 [cited 2022 Sept 05]; 15(1):e-9934. Available from: https://doi.org/10.17765/2176-9206.2022v15n1.e9934
https://doi.org/10.17765/2176-9206.2022v...
-1515 Monteiro EA, Mazin SC, Dantas RAS. The informal caregiver burden assessment questionnaire: validation for Brazil. Rev Bras Enferm. [Internet]. 2015 [cited 2022 Sept 05]; 68(3):421-28. Available from https://doi.org/10.1590/0034-7167.2015680307i
https://doi.org/10.1590/0034-7167.201568...
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Caregiver overload was assessed using the Informal Caregiver Overload Assessment Questionnaire (QASCI, in Portuguese), made up of 32 items covering seven domains (emotional overload; implications for personal life; financial overload; reactions to demands; perception of efficacy and control mechanisms; family support; and satisfaction with the role and the family member). The answers range from one to five (1= never; 2= rarely; 3= sometimes; 4= almost always; and 5= always). The total score ranges from 32 to 160 points. The higher the score, the greater the burden. To obtain the score, it is necessary to invert the values of the last three domains, as they are positive dimensions15. To check overload, a normative analysis of the QASCI was carried out: 0 points = no overload; 1 to 25 points = slight overload; 26 to 50 points = moderate overload; 51 to 75 points = severe overload; and >75 points = extremely severe overload1616 Candido RS, Costa AB, Silva FRT, Melo SCCS, Gervásio VL, Carreira L. Overhead of the informal caregiver of elderly with alzheimer’s in a municipality of Paraná. Braz J Hea Rev. [Internet]. 2020 [cited 2022 Sept 05]; 3(1):444-62. Available from: https://doi.org/10.34119/bjhrv3n1-034
https://doi.org/10.34119/bjhrv3n1-034...
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All the variables were stored in Microsoft Office Excel® 2016 spreadsheets for later statistical analysis. Descriptive analysis was used for categorical variables in terms of frequency and percentage. Mean, standard deviation, minimum, median, and maximum were used for continuous variables. The t-test (two categories) and ANOVA (three or more categories) were used to compare QASCI domain scores with categorical variables. If the assumptions for the tests were not met, the Mann-Whitney test (two categories) and the Kruskal-Wallis test (three or more categories) were used.

Spearman’s correlation coefficient was used to compare the scores of the QASCI domains with continuous variables. To compare the scores of the domains of the Hypertension Self-Care Scale with categorical variables, the t-test (two categories) and ANOVA (three or more categories) were used. If the assumptions for the tests were not met, the Mann-Whitney test (two categories) and the Kruskal-Wallis test (three or more categories) were used. Spearman’s correlation coefficient was used to compare the scores of the domains of the Hypertension Self-Care Scale with continuous variables. Spearman’s correlation coefficient was used to verify the relationship between the scores of the QASCI domains and the scores of the Hypertension Self-Care Scale domains with categorical variables. A significance level of 5% (p-value < 0.05) was used in all comparative analyses.

This study was approved by the Research Ethics Committee of the Federal University of São Paulo (UNIFESP), under Report No. 4.600.957. All participants had their names expressed by numbers and coded by acronym.

RESULTS

The sample consisted of 68 caregivers: mean age 52.72 years (SD=11.41); mean years of schooling 14.13 years (SD=3.98); caregiver activity performed for an average of 4.78 years (SD=5.42); time dedicated to care from 4 to 24 hours a day; female (n=58; 85.3%); lived with the elderly (n=44; 64.7%); mostly daughter or son (42; 61.8%); elderly people receiving care with a diagnosis of dementia (n=40; 58.8%); care provided daily (n=42; 61.8%); married caregivers (n=34; 50%); and retired or pensioners (n=21; 30.9%).

In the Hypertension Self-Care Scale (n=68 caregivers), only the self-care maintenance domain referring to routine care showed inadequate self-care (Table 1).

Table 1
Scores of the domains of the hypertension self-care scale in caregivers of elderly people - São Paulo, SP, Brazil, 2022

Table 2 shows that the caregivers (n=68) presented extremely severe overload according to the QASCI total score, and the domain of implications for personal life indicated moderate overload.

Table 2
Scores of the domains of the Informal Caregiver Overload Assessment Questionnaire in caregivers of elderly people - São Paulo, SP, Brazil, 2022

In Table 3, caregivers (n=68) who did not feel overburdened had a higher score in the patient confidence domain regarding their hypertensive condition, compared to those who felt very overburdened. Caregivers who were helped by someone else had a higher score in the domain of the patient’s level of confidence regarding their hypertensive status, compared to those who were not helped. The longer the care provided, the lower the score in the domain of self-care management measures during pressure decompensation.

Table 3
Association between the domains of the Hypertension Self-Care Scale and the variables related to the activity of caregiver of elderly people - São Paulo, SP, Brazil, 2022

Caregivers (n=68) without weekly rest scored higher on the QASCI in the domains of implications for personal life and satisfaction with the role and with the family member. Caregivers who provided daily care scored higher on the QASCI in the domain of implications for personal life than those who provided care for one to three days. Those who lived with the elderly had higher QASCI scores in the domains of personal life implications, financial burden and reactions to demands (Table 4).

Table 4
Association between the domains of the Informal Caregiver Burden Assessment Questionnaire and the variables related to caregiver activity for the elderly - São Paulo, SP, Brazil, 2022

With regard to the caregivers in Table 5 (n=68), the higher the total score on the QASCI and the domains emotional overload, implications in personal life and reactions to demands, the lower the score in the domain maintenance of self-care, care routine of the Hypertension Self-Care Scale. The higher the total score of the QASCI and in the domains of implications for personal life and family support, the lower the score in the domain of self-care management measures during pressure decompensation of the Hypertension Self-Care Scale. The higher the total score on the QASCI and in the domains of implications for personal life and financial burden, the lower the score in the domain of the patient’s level of confidence regarding their condition on the Hypertension Self-Care Scale.

Table 5
Correlation between the domains of the Hypertension Self-Care Scale and the domains of the Informal Caregiver Burden Assessment Questionnaire. São Paulo, SP, Brazil, 2022

DISCUSSION

In this study, most hypertensive caregivers of the elderly were female, daughters or sons, married, retired or on a pension. In addition, most of them lived with the elderly person and provided care daily. These data corroborate a study carried out in Teresina, which assessed anxiety and depression in informal caregivers of dependent elderly people. Despite all the social changes and the new roles taken on by women, women are still expected to take on care duties in general1717 Felipe SGB, Oliveira CES, Silva CRDT, Mendes PN, Carvalho KM, Silva-Júnio FL, et al. Anxiety and depression in informal caregivers of dependent elderly people: an analytical study. Rev Bras Enferm. [Internet]. 2020 [cited 2022 Sept 05]; 73(Suppl 1):e20190851. Available from: https://doi.org/10.1590/0034-7167-2019-0851
https://doi.org/10.1590/0034-7167-2019-0...
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The caregivers in this study had inadequate self-care in the domain of maintaining self-care in relation to the care routine. Non-adherence to drug and non-drug therapy can lead to uncontrolled blood pressure, increased risk of complications and mortality in hypertensive individuals1818 Putri SE, Rekawati E, Wati DNK. Effectiveness of self-management on adherence to self-care and on health status among elderly people with hypertension. J Public Health Res. [Internet]. 2021 [cited 2022 Sept 05]; 10. Available from: https://doi.org/10.4081/jphr.2021.2406
https://doi.org/10.4081/jphr.2021.2406...
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The sample studied showed that the longer the caregiver had been providing care, the lower the score in the domain of self-care management measures during blood pressure decompensation. It is known that hypertension is associated with an increased risk of acute myocardial infarction, heart failure, peripheral arterial disease, stroke and chronic kidney disease. This association contributes to hypertension being one of the main causes of reduced quality of life and life expectancy, associated with premature death and disability1919 Bazílio GS, Guimarães RA, Ribeiro GMP, Morais FO, Yamamoto RKR, Bernal RTI. Prevalence and factors associated with arterial hypertension in adults living in Senador Canedo, Goiás, Brazil: a population-based study, 2016. Epidemiol Serv Saude. [Internet]. 2021 [cited 2022 Sept 05]; 30(1):e2019311. Available from: https://doi.org/10.1590/S1679-49742021000100009
https://doi.org/10.1590/S1679-4974202100...
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Caregivers who did not feel overburdened had a higher score in the domain of the patient’s level of confidence in their condition. As the dependency of elderly people increases, care becomes more exhausting and stressful, with probable restrictions on their routine, generating overload. Overload can contribute to family caregivers neglecting self-care for their health due to the caregiving task2020 Brigola AG, Luchesi BM, Rossetti ES, Mioshi E, Inouye K, Pavarini SCL. Health profile of family caregivers of the elderly and its association with variables of care: a rural study. Rev Bras Geriatr Gerontol. [Internet]. 2017 [cited 2022 Sept 06]; 20(3): 410-22. Available from: https://doi.org/10.1590/1981-22562017020.160202
https://doi.org/10.1590/1981-22562017020...
. This may explain why the most overburdened caregivers in this study were less confident about their health.

Caregivers who received help from someone else in their care had a higher score in the domain of the patient’s level of confidence in their condition. It is well known that the activity of caring is commonly taken on by family members and often carried out by just one member of the family, who accumulates, along with this new role, other functions that they already carried out. Therefore, informal, or formal support is essential so that the caregiver doesn’t feel overwhelmed, can take care of their physical and mental health, and organize their personal life2121 Moura KR de, Sousa EMS, Pereira KLA, Barroso LMFM, Miranda MS, Carvalho GCN. Workload of informal caregivers of elderly at risk. Rev enferm UFPE on line. [Internet]. 2019 [cited 2022 Sept 06]; 13(5):1183-91. Available from: https://doi.org/10.5205/1981-8963-v13i05a239086p1183-1191-2019
https://doi.org/10.5205/1981-8963-v13i05...
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Overload is significantly associated with being female, having a low level of education, living with the patient, spending long hours caring for them, being depressed, living in social isolation, and having financial restrictions2222 Ferreira CR, Isaac L, Ximenes VS. Caring for the elderly: a women’s issue? Est Inter Psicol. [Internet]. 2018 [cited 2022 Sept 08]; 9(1):108-125. Available from: https://doi.org/10.5433/2236-6407.2018v9n1p108
https://doi.org/10.5433/2236-6407.2018v9...
. Similar characteristics were found in this study. Caregivers who lived with the elderly person, who provided care every day of the week, without rest, had a higher total score on the QASCI and in the domains of implications for personal life, financial burden, reactions to demands, satisfaction with the role and with the family member, when compared to those who did not.

Caregiver burden is associated with immune dysregulation, coronary artery disease and increased all-cause mortality2323 Ahmad 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. [Internet]. 2020 [cited 2022 Sept 08]; 19(1):186. Available from: https://doi.org/10.1186/s12904-020-00691-1
https://doi.org/10.1186/s12904-020-00691...
. Caregivers often provide long-term care for loved ones in their roles as spouses, partners, and children. Conflicts between professional career, caregiving responsibilities and family needs contribute to the caregiver’s feeling of greater burden.

Family, community, and social support is an important aspect in preventing or reducing this burden. Therefore, the caregiver’s burden needs to be understood so that health professionals can identify the caregiver’s needs, difficulties, and health conditions, enabling them to care efficiently, without harming their physical and mental health2222 Ferreira CR, Isaac L, Ximenes VS. Caring for the elderly: a women’s issue? Est Inter Psicol. [Internet]. 2018 [cited 2022 Sept 08]; 9(1):108-125. Available from: https://doi.org/10.5433/2236-6407.2018v9n1p108
https://doi.org/10.5433/2236-6407.2018v9...
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This study found that the higher the total score of the QASCI and its domains emotional overload, implications for personal life and reactions to demands, the lower the score in the domain maintenance of self-care, care routine of the Hypertension Self-Care Scale. These results are in line with what is already well established in the literature in relation to informal caregivers who have a high risk of developing burnout and exhaustion, as care tasks are stressful with other duties2424 Liu Z, Heffernan C, Tan J. Caregiver burden: a concept analysis. Int J Nurs Sci. [Internet] 2020 [cited 2022 Sept 08]; 7(4):438-45. Available from: https://doi.org/10.1016/j.ijnss.2020.07.012
https://doi.org/10.1016/j.ijnss.2020.07....
. Caregivers who are more overburdened have less time to maintain their own health and well-being, which can be associated with worse health outcomes.

Poor adherence to antihypertensive medication is a critical component of hypertension self-care. Difficulty with medication adherence is often multifactorial, as the cost of medication, access to care and health beliefs about the safety and efficacy of medication and health literacy are associated with adherence. In addition to these factors, caregivers who experience a high level of burden with varied responsibilities may not prioritize medication adherence, especially if medications need to be taken at certain times of the day or if a regimen is complex2525 Detaille SI, Lange A, Engels J, Pijnappels M, Hutting N, Osagie E, et al. A. Supporting double duty caregiving and good employment practices in health care within an aging society. Front Psychol. [Internet]. 2020 [cited 2022 Sept 08]; 11:535353. Available from: https://doi.org/10.3389/fpsyg.2020.535353
https://doi.org/10.3389/fpsyg.2020.53535...
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They may also be less likely to prioritize attending their own medical appointments, and therefore opportunities to reinforce the need to adhere to medication may be missed2525 Detaille SI, Lange A, Engels J, Pijnappels M, Hutting N, Osagie E, et al. A. Supporting double duty caregiving and good employment practices in health care within an aging society. Front Psychol. [Internet]. 2020 [cited 2022 Sept 08]; 11:535353. Available from: https://doi.org/10.3389/fpsyg.2020.535353
https://doi.org/10.3389/fpsyg.2020.53535...
. Another important aspect to highlight is that family caregivers, due to the difficulty of sharing the care of elderly people with other relatives, give up professional and existential projects. This abdication is often accompanied by negative impacts on the financial lives of these caregivers2626 Gutierrez DMD, Sousa GS, Figueiredo AEB, Ribeiro MNS, Diniz CX, Nobre GASS. Subjective life experiences of family caregivers of dependent older adults. Ciênc Saúde Colet. [Internet]. 2021 [cited 2022 Sept 08]; 26(01):47-56. Available from: https://doi.org/10.1590/1413-81232020261.30402020
https://doi.org/10.1590/1413-81232020261...
.

Public policies are still precarious, and many caregivers find themselves alone when carrying out this role, feeling helpless in the face of daily challenges. Family caregivers need psychological support and social support to find the conditions to build strategies that favor their quality of life2727 Granero GS, Santos AS, Sousa KCR, Cintra CP, Casemiro MC, Garcia LAA, et al. Overburden of family caregivers of elderly with depression: intervention strategies. Fam., Ciclos Vida Saúde Contexto Soc [Internet]. 2019 [cited 2022 Sept 10]; 7(4):491-502. Available from :https://doi.org/10.18554/refacs.v7i4.3872
https://doi.org/10.18554/refacs.v7i4.387...
.

This study had some limitations, such as the fact that caregiver burden can vary between caregivers who care for patients with different diseases or at different stages, the technique for data collection (online), since many family caregivers are also elderly people; therefore, they might have greater difficulty in this type of data collection (answering an electronic form, difficulty understanding questions, among others), and the sample of caregivers in this research was small, which does not allow the data to be generalized.

CONCLUSION

Hypertensive caregivers had inadequate self-care on the Hypertension Self-Care Scale. The self-care maintenance domain, referring to the care routine, indicated extremely severe overload, and the personal life implications domain showed moderate overload. The longer the caregiver had been providing care, the lower the score in the domain of self-care management measures during pressure decompensation. Those who did not receive help from another person to provide care had a lower score in the domain of the patient’s level of confidence in their condition.

The variables relating to the activity of caregiver that were related to impaired hypertension self-care were longer time as a caregiver, feeling overwhelmed and not having the help of another person for care. The variables relating to the activity of caregiver that were related to the burden of the informal caregiver of the elderly were caring every day of the week, living with the elderly person, and feeling overwhelmed.

This study made it possible to assess family caregiver burden using the QASCI and the Hypertension Self-Care Scale. The results indicated that the burden of caring has a negative impact on the emotional, physical, financial, and social well-being of the caregiver.

However, this study has contributed to a better understanding of the variables related to caregiver activity that are associated with burden and self-care for hypertension among caregivers of elderly people. Considering the aging population and the growing need for caregivers of elderly people, it is necessary to identify the work demands, difficulties and health conditions of caregivers to develop health strategies that address the needs of this population.

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Edited by

Associate editor: Dra. Susanne Betiolli

Publication Dates

  • Publication in this collection
    27 Nov 2023
  • Date of issue
    2023

History

  • Received
    14 Mar 2023
  • Accepted
    19 Aug 2023
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