RESEARCH ARTICLES

Nursing support for self-care of family caregivers

Sibely Rabaça Dias da Costa^I; Edna Aparecida Barbosa de Castro^II; Sonia Acioli^III

^I Nurse. Master in Nursing from the Nursing School of the Federal University of Juiz de Fora. Member of the Research Group on Self Care and Educational Process in Health and Nursing, Federal University of Juiz de Fora. Minas Gerais, Brazil. E-mail: sibelydemoraes@yahoo.com.br
^II Enfermeira. PhD in Public Health. Associate Professor, Department of Nursing in Adult Health of the Nursing School of the Federal University of Juiz de Fora. Leader of the Research Group on Self Care and Educational Process in Health and Nursing, Federal University of Juiz de Fora. Minas Gerais, Brazil. E-mail: edna.castro@ufjf.edu.br
^III Nurse. PhD in Public Health. Associate Professor, Department of Nursing in Public Health of the Nursing School of the State University of Rio de Janeiro. Brazil. E-mail: soacioli@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2015.16494

ABSTRACT

This article presents a qualitative study of self-care for family caregivers. Its main goals were to identify the positive and negative stimuli that such caregivers receive from their families, and to examine the nursing care needs posed by these stimuli. Taking Grounded Theory as a framework, 11 family caregivers of adults and older adults dependent on home care after discharge from a university hospital in Minas Gerais were interviewed in 2011. Positive stimuli identified included affection towards the dependent family member, and other family members' support by taking turns in providing care. Negative stimuli were demands, criticism and lack of support, including financial support, from other family members. It was concluded that there is a need for a formal support network to be provided either by the Family Health Strategy or by the home care service in order to support family caregivers with insufficient family support networks, and/or help them overcome the difficulties they face.

Keywords: Caregivers; family; nursing; self-care.

INTRODUCTION

In the late twentieth century, Brazil underwent demographic and epidemiological changes with significant reduction in fertility and birth rates and progressive increase in life expectancy. This led to increase in the proportion of the number of elderly in relation to other age groups, as well as changes in the profile of morbidity and mortality in the country, which is characterized by an increase in chronic diseases¹.

According to the Brazilian Institute of Geography and Statistics (IBGE), the changes in the organization of families in industrialized countries have been impacting Brazil since the last two decades of the twentieth century, through reductions in family size and in the number of couples with children, as a result of the decline in fertility and increased life expectancy².

According to these data, it is assumed that, by the reduction on the number of family members when a member of the family gets sick and becomes dependent on the others, care needs will not be adequately met, and there will be a burden on that member that is willing to take them. Thus, this study addresses self-care of family caregivers that needs to be combined with the care of their family dependent. Thus, they need support for learning and/or performing self-care to prevent the deficit thereof.

This article is originally in a chapter of a dissertation whose object was the self-care of the family caregiver, who, in this context, is influenced according to the stimuli received by the rest of the family³. The objectives were to identify the positive and negative stimuli that a family caregiver of dependent adults or elderly receive from family, and to analyze the needs of nursing care according to these stimuli, considering the Dorothea Orem's Nursing Theory.

LITERATURE REVIEW

Self-care is personal care that people perform daily to regulate their own working life and human development, and it is a regulatory human function. This is a key concept of the Dorothea Orem's General Theory, which expresses and develops the reason why people who are in self-care deficit need Nursing. The Self-Care Deficit Theory encompasses the Theory of Nursing Systems. This theory identifies the demand for self-care, which may be partial, full or only the need for support-education of nursing ⁴.

It is observed within families the existence of an alternation routine among family caregivers or even a hierarchy of the set of actions and required care. However, when the number of people in the family is small, such alternation or hierarchy is not effective, increasing the burden of the caregiver member, which impairs self-care⁵.

In the health care context, some authors refer to the family as a social institution that is limited to the group of people related by blood alliances, marriage or common-law marriage. Others, however, have a broader view on the term family, including people with strong social ties as a suitable and guiding base of the actions and nursing care⁴. In the current health care context, understanding the family functions is important in nursing work process, and the recognition of therapeutic self-care demand of each family member is needed to develop strategies to meet these demands.

Caring involves meeting the needs that are affected by both the family dependent as the caregiver. Although these needs are not highlighted, they require continuous attention and care due to the physical and psychological burden that this caregiver undergoes⁶.

By studying the self-care ability of adults and elderly hospitalized, it was observed that the lower the self-care ability of the dependent family member, the greater the need of support by a family caregiver, which can overload the caregiver, requiring that nurses identify them for the planning of educational practices that can continue self-care after hospital discharge⁷.

Importantly, caregiver's burden is not only related to objective questions arising from the act of caring, but also to subjective questions related to family conflicts and changes in caregiver's routine, as the abandonment of work and lack of leisure, for example⁸. This overload is also related to an insufficient social support, to the patient's difficulty in performing routine tasks, too caregiver's dissatisfaction with the support received from relatives or friends, to overwork, and it occurs more frequently in families that have a poor support network⁹.

The structure of social relations is composed by the network of formal relationships (through professional assistance) and informal relationships (through the help of friends and family), and social support includes resources provided in four areas: emotional support; practical support; information support and social interaction¹⁰.

Thus, health team interventions should be directed at seeking social support as a strategy to preserve both the caregiver's health and the patient's rehabilitation process, through actions that contribute to the family caregiver to take back their life plan, which was abandoned when he/she became a caregiver¹⁰.

METHODOLOGY

We chose the Grounded Theory (GT) as a methodological approach to understand the studied phenomenon, especially since it is a type of qualitative research whose roots are in Symbolic Interactionism, which allows describing a theory that is derived from data collected in natural scenery, and that are gathered and systematically analyzed through data collection, coding, analysis and theory¹¹.

Data collection was performed in two stages: first in a University Hospital (UH) in Minas Gerais, where family caregivers of adults and elderly dependents were selected through an active search of medical records and during nursing visit in medical clinics, in the first quarter of 2011. The second step was performed in the home environment, where caregivers have related with the dependent family member after discharge. The household environment became the setting of the study, for which we used the strategy of home visits (HV), observations and records in field diary, and a semi-structured interview with each caregiver.

The inclusion criteria of the study were: adults (18 years old or older), living in the municipality where the study took place and being characterized as a family caregiver of an adult or elderly who were dependent of care and continuous assistance. The number of caregivers was defined by the sampling process through theoretical saturation. Thus, we selected 11 family caregivers with the following degrees of relationship: four daughters, one wife, two husbands, one nephew, one niece and two mothers: eight female caregivers and three male caregivers, aged between 22 and 66 years old.

Exploratory research started after the approval of the UH Ethics Committee of the Federal University of Juiz de Fora (UFJF), with number of protocol 103-420-2010, following the criteria governing the ethical and legal aspects of research involving human beings¹². An Informed Consent Form was developed, explained and signed by all study participants and their identities were preserved through the use of pseudonyms.

The data collection was imported to OpenLogos software (version 1.0.2)¹³. This program enabled the organization and coding of data, facilitating the development of categories. Data analysis in GT occurs through open, axial and selective coding, wherein data are encoded, conceptualized and grouped according to similarity, for the construction of the categories of study.

This article presents the category Stimuli to self-care of the caregiver when care context is the family, with its two related sub-categories: Positive stimuli: host, affective interactions and support within the family, and Negative stimuli: accusations, demands and refuse to support from other family members.

RESULTS AND DISCUSSION

To the extent that the caregiver took responsibility for the care of his/her dependent family member at home, self-care suffered influences according to the stimuli of the rest of the family. The two subcategories arising from speeches are analyzed below.

Positive stimuli: host, affective interactions and support within the family

It was observed during the field work that when caregivers received support and were accepted in the family, they developed their role with more motivation, referring to a lower overload. The hope of improvement in family living conditions constituted one of these stimuli, through caregiver's expectation to find better conditions of access to care for the dependent family member, and also due to expectancy of clinical improvement of this family member. Thus, caregivers would not have felt overload in caring for that family member, and more time for self-care, which can be analyzed by speeches:

[...] When I everything she needs for me to take care of her at home properly, I believe that then I'll have more time, to live better. Because it will end this comings and goings, [...] I'll have visit home of nurses. (Lilian/daughter)

I retired and after that they [bosses] said: if you want to come back, it's ok. I said: No, let's wait, God will help us and when she get full recovered, then I won't need to be here in the everyday. (Ivo/husband)

Thus, when there was hope of improvement, the caregiver developed a hope that would stimulate them to continue looking for better living conditions and care for the dependent family member, with resources that would facilitate the care.

It was found, also, the existence of affection of the caregiver towards the dependent family member. It was noted that when there were feelings of love and affection, manifested by caregivers while taking care of the dependent family and demonstrated through attitudes, expressions and symbolic gestures, caregivers did not associate the care process with suffering and complaints of stress or overload, but with pleasure and satisfaction in taking care.

I see it in a positive way because I think that the education she gave to us, now it is the answer we are giving to her [...]. So it is difficult, but this work that we have with our mother, it is priceless; there is only love, only love, nothing else. (Isabel/daughter)

It is very rewarding, because I think that even though she is in this condition now, only the fact that she is here, it already gives motivation for me to do all I can do. (Lara/daughter)

Thus, the bonds of affection between the caregiver and the dependent family member constitute a positive stimulus that favors the realization of care. The warm relationship between the caregiver and the dependent family member was witnessed in all visited families.

Thus, caregivers who assess their relationship with the care receiver as characterized by strong affection bond tolerate better the burden of care and show less tension, which awakens the desire to provide assistance, regardless of obligation¹⁴.

Another stimulus that is classified as support to the self-care of the caregiver was the zealous behavior of the caregiver towards the dependent family member, which is demonstrated with concern attitudes regarding the care of their needs, as it can be seen through the testimony:

I once said to my mother: Mom, if there was a little thing, one more thing, wherever it was, that I could do to help you to improve, I would get it. She said: I know you do what you can. (Marta/daughter)

This zealous behavior favored the relationship between the caregiver and the dependent family member, which provided a relief in stressful situations and minimized caregiver's burden.

When other family members supported the caregiver, including physical, emotional and financial support, this also became an important positive stimulus in the self-care context of the caregiver. It was evident that, when caregivers received support from other family members, no matter how small it was, they highlighted that care routine became more easily, without overloads. They also said that during the alternation of care they could have time to perform self-care. This type of support was observed in only four of the 11 caregivers studied and it can be analyzed based on the statements:

I have to work, he works [husband]. Sometimes, for example, I stop working at eight o'clock and he will start working at six, at seven, then he [husband's brother] stayed with her. Saturday he stayed here. He does not complain. But if it was to stay every day, he would not stay. The responsibility is ours. We took it. (Elisa/niece)

For now, everything is working out, because her friend comes from time to time here, so I go out to do my things . (Ivo/husband)

Based on the Orem's theory, when addressing the self-care of home caregiver, it is understood that, through the support of an informal social network, the support-education nursing system can be settled, in which the caregiver has ability and willingness to learn skills and the nurse will help them in developing their function⁴.

In a study on the quality of life of caregivers of Alzheimer's disease carriers, regarding the domain of social relationships, the authors found that caregivers who received support in caring evidenced better quality of life, which shows the importance of developing strategies to address the lack of support and decrease the process of illness and exhaustion of the caregiver¹⁵.

Nurses should make use of educational practices within a proposal for shared construction between scientific knowledge and popular knowledge through the planning of actions based on caregivers' reality, interests and needs, in order to promote autonomy and citizenship of subjects¹⁶.

Negative stimuli: accusations, demands and refuse to support from other family members

When the caregiver does not receive support from friends or family and also hears demands and accusations coming from other people outside the binomial family caregiver-dependent family member, the caregiver becomes overwhelmed and suffers physical and psychological stress that need to be mitigated through care systematized by nurses.

One of the negative stimuli found was the lack of understanding of other family members, which was witnessed when there was disagreement of other family members as to the attitudes of caregivers in relation to the care of the dependent family member, which can be analyzed from the reports:

Their father's family members [...] are very difficult people, they are very stubborn people. So, everything you speak, if you speak something, you think they understood it, but they do not understand anything [...]. They find it easy. Take that and do it, but they do not care about knowing the cost of it, or how much I spent in bus tickets to go and to come back. (Eva/mother)

Everything that is priority is related to other subjects, you know. What is related to the other subjects is priority, my subjects are not [...]. Because it is not easy. I alone take care of an elderly person 24 hours a day under my own responsibility. If everything goes right, I do not receive any compliments, but if there is a fault, I will be judged for life because of that mistake. (Marta/daughter)

It was noted, as evidenced in these situations, that the other family members did not understand the burden of the caregiver, and this demands, combined with suspicion and criticism, generated emotional overload. Added to this demands, there was continued vigilance, inherent to the responsibility felt for the condition of being directly involved with the care actions of the dependent family member, which was observed by the speeches:

When she fell, the first time, she was with him [husband]. If it were me, he would scold me. Because he would say that I was not looking, this and that. [...] Because the more we help, the more we look, there is always someone to criticize. There is nobody to help, but to criticize there are a lot of people . (Elisa/niece)

Is there anything else I can do? What can I do to improve? We're always wondering whether what we are doing is right, whether something will help her, how it will help, what more we can do. (Marta/daughter)

In this case, the caregiver imposed demands to herself and did not consider that the care provided was adequate or sufficient to meet the demands of the dependent family member, and she was involved in a constant vigilance or search for perfection and in preventive measures to attacks or criticism.

Another negative stimulus found was the lack of support from other family members, which was seen when the caregiver did have financial assistance or aid from other family members to relieve in caring for the dependent family member. This made him overwhelmed, hindering the achievement of self-care.

Because nobody has time to come here. There are other excuses, because in those people's heads what they have is more important than what I have [...].(Marta/daughter)

I think that if only the father stayed with him from 15 in 15 days because, as much as I do, I think I deserve the right to have at least a weekend to take care of myself or during the week so that I could go to the doctor, I could do anything, but I would come out of this stressful situation. (Eva/mother)

The lack of support in the families surveyed did not refer only to physical assistance of another family member in performing care, but also to financial support due to the increase in expenditure with care to the dependent family member.

Suddenly I had to stop everything, to be taking care of home, because I was forced to do it. Because I saw that the daughter would not help, the son is also like that, then, whether I want it or not, I have to take care. (Saulo/husband)

I do not receive help from anyone, no. From a husband who has already died, I received no pension, I had nothing. And he, poor man, he helps me so I'm here. But he can't help me either. For example, I need to treat my teeth and it is expensive. Because he also earns little, a minimum wage. (Gisele/wife)

Thus, the caregivers have financial difficulties not only due to increased spending on care to the dependent family member, but also due to the lack of support from other family members.

In the context of nursing care to the caregiver who is in wear or stressful condition, when it is not observed the existence of a social network of informal support, from the Dorothea Orem's point of view, the fully compensatory nursing system should be used, that is, the one in which the nurse meets, in full, the care that the family caregiver needs⁴.

An article on national studies of family caregivers of elderly showed that caregivers' stress was caused by the burden of care, by having been single caregiver for a long time, by imposition of the task of caring, by the negative perception of care, by social isolation, and also by precarious economic situation. These studies also indicated the need for nurses to establish a therapeutic relationship, through an educational, social and psychological support to these families, and to identify their needs to trace care strategies that would provide relief from stress, organization and systematization of care and social support to improve the quality of life of caregivers¹⁷.

Therefore, formal support programs should be encouraged to promote family balance, to favor the reduction of conflicts and to provide family caregivers a professional reference that could guide them, train them and favor them in the conciliation of self-care with care to the dependent family member. Two examples of programs that can be used are offered by the National Health System, namely the Family Health Strategy (ESF), by conducting periodic home visits¹⁸, and the Home Care Service (SAD), meeting in three types of care, according to the profile of the dependent family member¹⁹.

CONCLUSION

The methodological approach used, through its phases of data collection, coding and analysis, allowed the understanding of nursing support for self-care of family caregivers, based on the stimuli received by the rest of the family.

The use of Dorothea Orem's theories showed that the demand for nursing care by family caregivers increases in the extent that negative stimuli are found, such as lack of support and understanding and the demands, that impair both care for the dependent family member as self-care for the caregiver.

A limitation of the study is the fact that family caregivers of only one municipality of Minas Gerais have been investigated. Thus, there is need for advances in research on family caregivers of other regions of the country, in order to carry out comparative studies, on the grounds that it is a growing group in the context of home care, particularly due to with changes in demographic and epidemiological profile of the Brazilian population.

It is concluded that a formal support network is needed and can be implemented through the ESF and the SAD, to support and/or minimize the difficulties faced by family caregivers who have an insufficient family support network. In assisting and providing care to the dependent family member at home, nurses collaborate both for the training of caregivers, as for comprehensive health care from the moment that the family is also involved in their care plan. And, in taking care of the family, in full, the nurse collaborates for the prevention of illness of family caregivers.

REFERENCES

1.Ministério da Saúde (Br). A vigilância, o controle e a prevenção das doenças crônicas não transmissíveis: DCNT no contexto do Sistema Único de Saúde brasileiro. Brasília (DF): Ministério da Saúde; 2005.

2.Instituto Brasileiro de Geografia e Estatística. Síntese de indicadores sociais: uma análise das condições de vida da população brasileira 2010. Rio de Janeiro: IBGE; 2010.

3.Costa SRD. Autocuidado do cuidador familiar de adultos ou idosos dependentes após a alta hospitalar: uma contribuição para o cuidado de enfermagem [dissertação de mestrado]. Juiz de Fora (MG): Universidade Federal de Juiz de Fora; 2012.

4.Orem DE. Nursing: conceptsofpractice 5^th ed. St. Louis (Mis): Library ofCongress; 1995.

5.Castro EAB. Tecendo a rede de proteção após a queda: o cuidado depois da alta. In: Camargo Junior KR. Por uma filosofia empírica da atenção à saúde: olhares sobre o campo biomédico. Rio de Janeiro: Fiocruz; 2009. p. 155-87.

6.Gomes WD, Resck ZMR. Cuidado a clientes com sequelas neurológicas. Rev enferm UERJ. 2009; 17: 496-501.

7.Costa SRD, Castro EAB. Acioli S. Capacidade de autocuidado de adultos e idosos hospitalizados: implicações para o cuidado de enfermagem. Rev Min Enferm. 2013; 17(1):193-207.

8.Pedreira LC, Oliveira MAS. Cuidadores de idosos dependentes no domicílio: mudanças nas relações familiares. RevBrasEnferm. 2012; 65: 730-6.

9.Brito ES, RabinovichEP. A família também adoece!:mudanças secundárias à ocorrência de um acidente vascular encefálico na família.Interface – Comunic, Saúde, Educ. 2008; 12:783-94.

10.Bocchi SCM, Angelo M. Entre a liberdade e a reclusão: o apoio social como componente da qualidade de vida do binômio cuidador familiar-pessoa dependente. Rev Latino-Am Enfermagem. [online]. 2008; 16(1). [citado em 05 abr 2013]. Disponível em: http://www.scielo.br/pdf/rlae/v16n1/pt_02.pdf.

11.Strauss A, Corbin J. Pesquisa qualitativa: técnicas e procedimentos para o desenvolvimento de teoria fundamentada. 2ª ed. Porto Alegre (RS): Artmed; 2008.

12.Ministério da Saúde (Br). Conselho Nacional de Saúde. Resolução nº 196, de 10 de outubro de 1996 [online]. Aprova as diretrizes e normas regulamentadoras de pesquisas envolvendo seres humanos [citado em 30 jul 2011]. Disponível em: http://bvsms.saude.gov.br/bvs/saudelegis/cns/1996/res0196_10_10_1996.html.

13.Camargo Junior KR. Apresentando Logos: um gerenciador de dados textuais. Rio de Janeiro: Instituto de Medicina Social,UERJ; 2003.

14.Fernandes MGM, Garcia, TR. Determinantes da tensão do cuidador familiar de idosos dependentes. Rev Bras Enferm. 2009; 62:57-63.

15.Bagne BM, Gasparino, RC. Qualidade de vida do cuidador do portador de Doença de Alzheimer. Rev enferm UERJ. 2014; 22:258-63.

16.Acioli S, David HMSL, Faria MGA. Educação em saúde e a enfermagem em saúde coletiva: reflexões sobre a prática. Rev enferm UERJ.2012; 20:533-6.

17.Oliveira DC, D'Elboux MJ. Estudos nacionais sobre cuidadores familiares de idosos: revisão integrativa. Rev Bras Enferm. 2012; 65:829-38.

18.Ministério da Saúde (Br). Saúde da família: uma estratégia para a reorientação do modelo assistencial. Brasília (DF): Ministério da Saúde; 1997.

19.Ministério da Saúde (Br). Secretaria de Atenção à Saúde. Portaria nº 963, de 27 de maio de 2013. Brasília (DF): Gabinete Ministerial; 2013.