ORIGINAL ARTICLE
CONTEXT OF LIFE AND HEALTH OF INFORMAL CAREGIVERS OF CARE-DEPENDENT ELDERLY
CONTEXTO DE VIDA E SAÚDE DE CUIDADORES INFORMAIS DE IDOSOS DEPENDENTES DE CUIDADOS
CONTEXTO DE VIDA Y SALUD DE CUIDADORES INFORMALES DE ANCIANOS DEPENDENTES DE CUIDADOS
Maria Julia Yunis Sarpi1
Iara Sescon Nogueira2
Mariana Pissioli Lourenço3
Lígia Carreira4
Vanessa Denardi Antoniassi Baldissera5
ABSTRACT
Objective: to analyze the life and health context of informal caregivers of care-dependent elderly. Methods: a descriptive and quantitative study, conducted from February 2017 to January 2018, with 15 caregivers of elderly residents in the area covered by a basic health unit located in Maringá-PR. Data were collected through semi-structured interviews conducted at the elderly's home, using a sociodemographic questionnaire and the reduced Zarit overload scale, and subsequently analyzed using descriptive statistics using the Microsoft Excel 2010® computer software. Results: predominantly the caregivers of the
elderly are female, daughters, cohabit with the elderly, do not practice physical and/or social activities, do not receive assistance to perform care, have not received training and have some burden degree. Conclusion: it is necessary to plan health actions focusing on prevention and management of the burden of elderly´s caregivers, preventing physical and psychological exhaustion, promoting the quality of life of these individuals, and thus also the qualification of the care offered by them.
Descriptors: Primary Health Care; Health of the Elderly; Caregivers; Health Promotion; Primary Prevention.
1 Nurse. Resident of the child and adolescent health program at the university of São Paulo (USP). E-mail:
mariajuliaysarpi@gmail.com
2 Nurse. Master in Nursing. Doctoral student in Nursing, graduate Nursing program, State University of Maringá (SUM). E-mail: iara_nogueira@hotmail.com
3 Nurse. Master in Nursing. Collaborating professor at the Nursing department of the State University of Paraná (UNESPAR). E-mail: marianapissiolilourenco@gmail.com
4 Nurse. PhD in Nursing. Professor at the department of Nursing and graduate program in Nursing at the State University of Maringá (SUM) E-mail: ligiacarreira@hotmail.com
5 Nurse. PhD in Sciences. Professor at the department of Nursing and graduate program in Nursing at the State University of Maringá (SUM). E-mail: vanessadenardi@hotmail.com
Corresponding author: Iara Sescon Nogueira. Address: Rua Hélio Jarreta nº 54, Vila Bosque, Maringá-PR-
Life context and health of elderly caregivers
RESUMO
Objetivo: analisar o contexto de vida e saúde dos cuidadores informais de idosos dependentes
de cuidados. Métodos: estudo descritivo e quantitativo, realizado no período de fevereiro de 2017 a janeiro de 2018, com 15 cuidadores de idosos residentes na área de abrangência de uma Unidade Básica de Saúde localizada em Maringá-PR. Os dados foram coletados por meio de entrevista semiestruturada realizada no domicílio do idoso, utilizando um questionário sociodemográfico e a Escala de Sobrecarga de Zarit Reduzida, e posteriormente analisados a partir de estatística descritiva, por meio do programa computacional Microsoft Excel 2010®.
Resultados: predominantemente os cuidadores de idosos são do sexo feminino, filhas,
coabitam com o idoso, não praticam atividades físicas e/ou sociais, não recebem auxílio para realizar o cuidado, não receberam capacitação e apresentam algum grau de sobrecarga.
Conclusão: torna-se necessário o planejando de ações de saúde com foco na prevenção e
manejo da sobrecarga dos cuidadores de idosos, prevenindo o esgotamento físico e psicológico, promovendo a qualidade de vida desses indivíduos, e com isso, também a qualificação do cuidado ofertado por eles.
Descritores: Atenção Primária à Saúde; Saúde do Idoso; Cuidadores; Promoção em Saúde;
Prevenção Primária.
RESUMEN
Objetivo: analizar el contexto de vida y salud de los cuidadores informales de ancianos
dependientes del cuidado. Métodos: estudio descriptivo y cuantitativo, realizado entre febrero de 2017 y enero de 2018, con 15 cuidadores de personas mayores residentes en el área cubierta por una Unidad Básica de Salud ubicada en Maringá-PR. Los datos fueron recogidos a través de entrevistas semiestructuradas realizadas en la casa de los ancianos, aplicando un cuestionario sociodemográfico y la escala reducida de sobrecarga de Zarit, y posteriormente los datos fueron analizados a través de estadísticas descriptivas utilizándose el programa de computadora Microsoft Excel 2010®. Resultados: predominantemente los cuidadores de ancianos son mujeres, hijas, viven con los ancianos, no practican actividades físicas y / o sociales, no reciben asistencia para realizar el cuidado, no han recibido capacitación y tienen algún grado de carga. Conclusión: es necesario planificar acciones de salud centradas en la prevención y el manejo de la carga de los cuidadores de ancianos, previniendo el agotamiento físico y psicológico, promoviendo la calidad de vida de estos individuos y, por lo tanto, también la calificación de la atención ofrecida por ellos.
Descriptores: Atención Primaria de Salud; Salud del Anciano; Cuidadores; Promoción de la Salud; Prevención Primaria.
INTRODUCTION
The population scenario in Brazil has been moving towards an increase in the elderly population and according to projections of the World Health Organization (WHO), it will be 15 times bigger until the year 2025(1). The aging
process is accompanied with many biopsychosocial changes, such as cognitive, physical and mental losses, personality changes in social and productive life, which can affect the autonomy and quality of life of the elderly(2). Elderly functional disability
refers to the difficulty or need for help that an individual requires to perform tasks in their daily life, and added to this factor, there may be still diseases that aggravate the disability and make the elderly dependent on care(3).
Although these changes are common to the elderly, functional disability reflects negatively on their health and quality of life and, consequently affects the health and life of family members. Once these changes are diagnosed, there is a need to list a caregiver to assist the elderly in the basic activities of daily living, such as feeding, personal hygiene, medication and mobility. This type of care allows the elderly to continue
Life context and health of elderly caregivers
following their routine and prevents the occurrence of violence to this population(3).
As for caregivers, there are two types, formal and informal. The formal caregiver is the one who has received specific training in an officially recognized institution and who receives remuneration to perform its activity. The informal caregiver can be either a family member or an acquaintance. Generally, they have not received any training to perform this role, and provide care and assistance to others without pay(4).
Informal caregivers often give up caring for their lives to assist the elderly and this can trigger negative feelings, as the caregiving process may be experienced in a painful and difficult way, if there is no support from others family members or health services. Therefore, the lack of information and preparation to perform the role of caregiver can impair the care offered, the health of the elderly under their supervision, as well as the quality of life of the caregiver himself(4,5).
In this context, the greater the dependence degree of the elderly, the greater will be the caregivers´ duties and also the time available to meet the needs of the elderly under their responsibility. As a consequence, a caregiver burden process may trigger physical, psychological, emotional, social and financial problems that affect not only the caregiver's well-being, but negatively influence the health of the elderly assisted by the caregiver(5).
Thus, it is necessary to implement strategies by the family, such as social support networks that may reduce the negative consequences related to caring. Social support includes the structure of the social relationship network and the adequacy of its functions, especially the degree of satisfaction of the person receiving the support(6).
As part of the support network, health services are inserted and it is up to health professionals to consider the health of the informal caregiver and to assess the
degree of burden to which they are subjected, as they are exposed to high stress and also need care and attention(7).
The Family Health Strategy (FHS) can collaborate in this scenario, especially by creating lasting bonds that provide support to the caregiver and the proper performance of their role with the elderly(8). In this sense, there is a need
for health education actions, for which the role of the professional nurse is appropriate, enhancing the caregiver's conditions through health education, seeking to improve their health status(8).
Given the above, it is important that the FHS team understands the needs of the caregiver so that they can plan and execute appropriate interventions. Thus, an extension project of the department of Nursing of the State University of Maringá (SMU), entitled “Home nursing care for families of care-dependent elderly” (HNFCE), has been developing actions aimed at home care of elderly people in the area scope of an FHS team. In partnership with this team, this project seeks to develop interventions for informal caregivers of care-dependent elderly, and to this end, developed the present research proposal, collaborating with health practices by allowing to unveil the characterization of the profile of these caregivers and their possible care needs, since this collaboration does not require a previous survey of their living and health conditions.
Given this, the question that guided the present study was: What is the context of life and health of the informal caregiver of care-dependent elderly? Therefore, the study aimed to analyze the context of life and health of informal caregivers of care-dependent elderly. METHODS
This was a descriptive and quantitative field study, conducted with caregivers of elderly dependent on care residing in the area covered by the basic health unit (BHU) Vardelina, located in the city of
Life context and health of elderly caregivers
Maringá, in the northern central region of the Parana state, Brazil.
The research subjects were conveniently selected by the researcher and the FHS team of the referred BHU. As inclusion criteria were established that the participants should be informal caregivers of elderly people who had dependence for daily activities and were identified as primary caregivers, besides being attended by the nursing extension project, the HNFCE. The same occurs at BHU Vardelina in partnership with the State University of Maringá, since July 2016. There were no exclusion criteria. Meeting the criteria, 15 caregivers of the elderly integrated the target population and agreed to participate in the study.
Data were collected through individual semi-structured interviews conducted at the elderly's home, using two instruments: a sociodemographic, health and habits/living form; and the reduced Zarit overload scale. The socio-demographic, health and habits/living form was elaborated by the researchers themselves and divided into three parts: caregiver identification, identification of life habits and health conditions. The following variables were included in the form: age, gender, education, occupation, marital status, kinship with the elderly, cohabitation with the elderly, time caring for the elderly, help to exercise care, physical and social activity, presence of morbidities and training for caregiving.
To measure the objective and subjective burden of the caregiver in relation to the care provided to the elderly, the second instrument, the reduced Zarit overload scale (9),
translated and validated in 2002 for the Brazilian culture (10) was used. This scale
has seven items in the Likert scale format and aims to evaluate the impact caused by caring on physical, emotional and social aspects, presenting the following scores: up to 14 points mild overload; 15 to 21 points moderate overload; and above 22 points severe overload.
The collection instruments were applied by the researcher and after data collection, the information was condensed into a spreadsheet and later analyzed from descriptive statistics, using the Microsoft Excel 2010®
computer software. The findings were discussed with current and pertinent literature.
The research was part of a larger study that was submitted to the standing committee of ethics in research with human beings of the State University of Maringá (SCERH / SUM), and obtained a favorable opinion (CAEE: 37457414.6.0000.0104, Opinion No. 1.954.350). The consent of the participants was assured by signing the two-way informed consent form.
RESULTS
Fifteen caregivers of the elderly participated in the research. Of these, 11 (73.4%) were sons or daughters, 02 (13.4%) husband or wife, 01 (6.6%) father or mother and 01 (6.6%) sister or brother of the elderly. The socio-demographic, lifestyle and health variables of this population are presented below in Table 1.
It was observed that the majority of the population is female (86%) and falls into the age group over 60 years (60%); with incomplete elementary school (66.7%); retired or pensioner (60%); cohabiting with the elderly (86%); with some morbidity (80%); caring less than five years (53.4%), without receiving assistance from anyone (93.4%); and did not receive training for the caregiver function (93.4%).
The most frequent health conditions were related to the locomotor system, such as osteoporosis, arthrosis and arthritis, with eight (53.3%) caregivers; systemic arterial hypertension, with seven (46.7%); diabetes mellitus with two (13.3%); and three (20.0%) caregivers had no morbidity.
Life context and health of elderly caregivers
Table 1. Characterization of caregivers of care dependent
elderly. Maringá-PR, Brasil, 2017-2018.
Variables N % Sex Male 02 14,0 Female 13 86,0 Age <60 years old 06 40,0 >60 years old 09 60,0 Education
Incomplete primary education 10 66,7 Complete primary school or more 05 33,3
Marital status
Married / consensual marriage 06 40,0
Single 06 40,0
Widowed 03 20,0
Occupation
Active 06 40,0
Retired or pensioner 09 60,0
Relationship with the elderly
Daughter/son 11 73,4
Husband/wife 02 13,4
Father/mother 01 6,6
Brother/sister 01 6,6
Cohabitation with the elderly
Yes 13 86,0
No 02 14,0
Presence of morbidity
Yes 12 80,0
No 03 20,0
Time caring for the elderly
Less than five years 08 53,4
11 to 20 years 03 20,0
11 a 20 anos 02 13,3
More than 20 years 02 13,3
Social activity Yes 05 33,3 No 10 66,7 Physical activity Yes 06 40,0 No 09 60,0
Gets help when exercising care
Yes 01 6,6
No 14 93,4
Received training for caregiver role
Yes 01 6,6
No 14 93,4
Total 15 100,0
Table 2 shows the scores obtained by applying the reduced Zarit overload scale in caregivers of care dependent elderly. It was found that all caregivers had some level of overload, 46.8% had scores of up to 14 points, configuring as mild overload, followed by four (26.6%) caregivers classified as moderate overload and four ( 26.6%) with severe overload.
Table 2. Overload score of caregivers of
care-dependent elderly from the reduced Zarit overload scale. Maringá - PR, 2017-2018. Overload N % Mild overload Up to 14 points 07 46,8 Moderate overload 15 to 21 points 04 26,6 Severe overload 22 or more points 04 26,6 Total 15 100,0 DISCUSSION
The data revealed that most of the caregivers interviewed were women and daughter of the elderly dependent on care, corroborating findings from other studies(3,4). When a family member
commonly gets sick, the woman takes responsibility for care, and despite the decrease in fertility rates (decrease in the number of family members) and the insertion of women in the labor market, care responsibilities are socially understood as natural and social inherent to the role of women in providing care for the house, children and husband(11,12).
Unusually, men are responsible for direct care, contributing only secondarily(13).
In addition, the family has been pointed as the main source of support to the elderly, complying with established social norms(4). The fact that the
relationship is of affiliation may generate a risk factor for caregiver burden, considering that the care demands, occupation with domestic activities and other activities, paid or unpaid, are often exposed. This possible overload may have negative impacts on caregivers' quality of life(3,13).
Although most of the caregivers in this study were sons or daughters, part of them was spouses. It is noteworthy that it was found a reality in which the elderly are caring for other more dependent elderly. The age similarity may influence the physical, emotional and social aspects of the caregiver, contributing to their social isolation(14). According to a
research conducted to assess caregiver burden related to physical, psychological, financial and quality of life(15), elderly
caregivers have shown significant functional losses that resonate with a decrease in their overall potential, which
Life context and health of elderly caregivers
may also justify the relationship between the domain of their functional capacity and the age group over 60 years(14).
Regarding marital status, it was observed that the percentage of married caregivers/consensual union and single is the same. The presence of a partner can be beneficial and facilitating, but it can also cause friction in the family, depending on how the partner views the situation. The spouse may be a source of emotional and instrumental support to the caregiver, but may also not accept the commitment of care and the time available for this function(4,16). An
informal caregiver usually spends full time caring for the elderly, lacking time to care for their spouse(3).
The caregivers of this research, predominantly resided with the elderly, performed care without support and did not practice any social and/or physical activity. This result is also pointed out in other studies(2,4). The greater the
interaction between the caregiver and the elderly, the greater are the necessary modifications in the caregiver's life, causing an increase in the level of overload due to the demand for daily and uninterrupted care(3).
The biggest obstacles experienced in the care process are the impossibility of leaving home and performing leisure activities, as they feel responsible and worried daily about the disease and the care of the elderly(14). The absence of
routine practice of social and/or physical activities is also characterized as a factor that may contribute to increased overload. When the caregiver allocates most of the time to the elderly and their needs, they neglect their own life, needs and consequently their health(3). The
caregiver no longer feels that it has the autonomy to manage its own life and believes that it must live around the other(14).
It is also highlighted in the present study that most caregivers (80.0%) have one or more morbidities. The negative health conditions presented by the caregivers may reflect an exhausting and stressful daily life, as well as the lack of preparation to perform the care(3,4).
Prevalently, the activities performed by caregivers require physical effort,
depending on physical conditioning to perform the heavy tasks(17).
Regarding the scores obtained in the reduced Zarit overload scale, all caregivers had some degree of overload, especially mild overload (46.8%). The results differ from the literature, which points to a higher rate of caregivers with severe degree of overload(2-4). This
dissimilarity may be related to the fact that care time was less than five years. The degree of caregiver burden is closely related to the degree of frailty and dependence of the assisted elderly(18), in
addition to the time spent daily to care and exposure for prolonged time.
Concerning the preparation for care delivery, most caregivers (93.4%) did not receive any formal guidance to assume this role. In this context, the nurse plays a fundamental role, considering that this professional establishes a bond with the caregiver and their family members, and can guide the systematization of care, so that the caregiver does not become overwhelmed by the care provided. Besides being a natural health educator, the nurse has the necessary tools to propose strategies for the qualification of care and the promotion of quality of life of the elderly and caregivers(3).
Finally, policies to qualify formal and informal care and share the burden of care in a family network equally, may alleviate negative processes related to the well-being of caregivers, in addition to promoting psychological support that also alleviates emotional distress(13).
The limitations of the study include the reduced number of participants and the convenience selection, which limits the generalization of the results to the population of caregivers of the elderly present in different Brazilian settings. Further studies are suggested that address the profile of informal caregivers of care-dependent elderly using different methodological approaches, since the context of life and health of caregivers of the elderly still lacks scientific deepening.
Life context and health of elderly caregivers
CONCLUSION
The present research allowed to evaluate the burden of informal caregivers of care-dependent elderly and to characterize them from the sociodemographic, lifestyle and health conditions. The results showed that predominantly the caregivers are female, daughters, live with the elderly, do not practice physical and/or social activities, do not receive assistance to perform the care, did not receive training, and all present some degree of burden.
It is believed that the caregivers of the elderly are poorly contemplated by health services and there are fragilities both in the health of the caregiver, as in the care offered to the elderly. Thus, it is essential that the health team pay more attention to this population, planning health actions focusing on prevention and management of the burden of caregivers of the elderly, preventing physical and psychological exhaustion, promoting the quality of life of these individuals, and therefore the qualification of the care offered by them.
Individual contribution of the authors: Sarpi MJY; Nogueira IS and Lourenço MP: They have participated
in the conception and writing of the project; data collection, analysis and interpretation; writing of the article and final approval of the version to be published. Carreira L and Baldissera: Participated in the relevant critical review of the intellectual content and final approval of the version to be published. All authors declare to be responsible for all aspects of the work, ensuring its accuracy and integrity.
Submitted: 21/05/2019 Accept in: 18/08/2019
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