Nursing as seen by primary caregivers of individuals with chronic disease in the hospital environment


Andressa Cunha de PaulaI; Paulie Marcelly Ribeiro dos Santos CarvalhoII; Claci Fátima Weirich RossoIII; Márcia Maria de SouzaIV; Nélio Barbosa BoccaneraV; Marcos André de MatosVI.

I Nursing student. Nursing School, Federal University of Goiás. Goiânia, Goiás, Brazil. E-mail: andressacunha@gmail.com
II Nurse. Ph.D. student in Nursing Care, Nursing School, Federal University of Goiás. Goiânia, Goiás, Brazil. E-mail: pauliemarcelly@ufg.br
III Nurse. Pro-rector of Extension and Culture, Federal University of Goiás. Goiânia, Goiás, Brazil. E-mail: claci@ufg.br
IV Nurse. Ph.D. Professor of the Nursing School, Federal University of Goiás. Goiânia, Goiás, Brazil. E-mail: marcia.fen@gmail.com
V Nurse. Nursing Manager of the medical clinic of Hospital das Clínicas, Federal University of Goiás. Goiânia, Goiás, Brazil. E-mail: nboccanera@gmail.com
VI Nurse. Ph.D. Professor of the Nursing School, Federal University of Goiás. Research tutor. Goiânia, Goiás, Brazil. E-mail: marcosmatos@ufg.br

DOI: http://dx.doi.org/10.12957/reuerj.2017.15493




Objective: to identify the meanings of nursing care to primary caregivers of adults with chronic noncommunicable diseases at a hospital in the Central Region of Brazil. Method: this qualitative, descriptive study was conducted by semi-structured interviews of 220 primary caregivers, from May to November 2014, and using content analysis technique. The study had research ethics committee approval (opinion 031/2009). Results: the following categories were identified in the transcriptions: affective relationships and care; nursing and the vocational-religious model; professional subordination and client satisfaction and care. Conclusion: caregivers still have a narrow and limited view of nursing, and do not consider that the profession acts with scientific evidence-based rigor and in articulation with social utility. The findings offer a starting point for planning interventions that translate the knowledge produced by nursing to primary caregivers in the hospital setting, who are opinion leaders, as a group, inside and outside the hospital.

Keywords: Caregivers; cursing care; hospital care; family.




The increase in the life expectancy of the world population has increased disability and functional incapacity due to chronic non-communicable diseases (CNCD), with an increasing demand for hospital care1. Furthermore, there was a similar increase in the population needing informal caregivers to assist them in activities of daily living. Thus, the presence and permanence of family members in health units has been widely discussed and encouraged in different parts of the world 2-6.

Since 2007, the Brazilian Ministry of Health has guaranteed unrestricted visits to the hospitalized individual by family members, as it understands that caregivers act primarily as a resource in the humanization of assistance, both in caring and in promoting the patient's quality of life 6.

However, even after a decade, many inpatient units have not yet been restructured to make support services available for caregivers of adults 7. It is hoped that the results of this study may support managers and health professionals, in particular the nursing team, in the planning of actions and interventions, considering the specificities of the caregiver's profile.

Thus, this study aimed to identify the meanings of nursing care for primary caregivers of adults with CNCD in a hospital in the central-western region of Brazil.



The primary caregiver in the hospital environment is that individual close to the patient who takes on the role of caring without contractual or financial obligations and without necessarily having been trained for this type of activity. Studies have shown that the caregivers' involvement produces a positive response to the therapeutic regimen and patient rehabilitation 3,5-7. However, health teams do not understand yet the real potential that the caregiver has in relation to patient recovery 8. Caregivers have specific demands and needs in the hospital context, as the hospital is often an unknown and frightening environment, making them fragile and vulnerable 4,5.

The creation of multidisciplinary support resources and spaces are issues that could promote coping with the difficulties arising from the hospitalization of a relative and, consequently, to minimize the caregiver's vulnerabilities 2-5. Therefore, it is necessary to fill the gap of knowledge about this emerging hospital population in order to understand their needs and perceptions about nursing care. Likewise, this may contribute to the health team in providing more effective care to the hospitalized individual, enabling the implementation of actions and/or programs that aim at integral, equanimous and humanized care for both the individual and their caregivers.



This is a descriptive, qualitative study developed between May and November 2014 with primary caregivers of adults with CNCDs in a hospital in the central-western region of Brazil. The choice of this field of research is justified by the fact that the research institution is a referral center for the care of CNCD in the central, northern and northeastern regions of Brazil.

Two hundred and twenty primary caregivers of hospitalized adults aged 18-74, who showed interest in participating in this study after learning about its objectives, signed informed consent forms. The primary caregivers were those individuals with no health training but who had permanent responsibility for the person under their care 6. This number was defined by the criterion of data saturation understood as the moment at which the addition of further data in a study does not alter the conception of the phenomenon under study 8. As the study subjects are primary caregivers and the participation of men in this activity is still incipient, a larger number of participants was necessary to achieve data saturation.

The inclusion criterion of this study was to be a primary caregiver during the period of data collection. Caregivers of patients who did not have CNCDs were excluded, as were those who did not fall into the category of primary caregiver. A semi-structured interview containing two parts was used for data collection: the first section included identification data, follow-up data and the second section comprised a guiding question focusing on the subjects' perception about nursing care. During the data collection process, due concern was paid to the privacy of individuals.

The perceptions arising from the guiding question were analyzed using the principles of thematic content analysis as proposed by Bardin 9. This analysis of the discourses uses systematic procedures and objectives of description of the content of the messages composed by: pre-analysis, exploitation of transcribed discouse, data processing, inferences and interpretations. Initially, in the pre-analysis phase, exhaustive readings of all the discourses of the research subjects were made, in order to examine and know the content thereby facilitating the comprehension of the material.

In the exploration phase of the speech, the discourse was codified for the raw data of the text to be converted into meaningful information about its content. This phase consisted of the following stages: exploration of the material, and classification and aggregation of information to arrive at itemized units. Subsequently, thematic analysis was carried out, in which the core ideas of the text were highlighted with the presence or frequency of these ideas having some meaning. The categories appeared from the grouping of these meanings according to their similarities.

Finally, in the inference and interpretation phase, deductions were made based on the facts presented in the discourses using inference variables to formulate suppositions that supported the interpretation 8. To identify the passages presented, an alphabetic code (letter 'I' for interviewee) was adopted, followed by an Arabic number (1; 2; 3 ...) referring to the chronological order of interviews in order to safeguard the identity of the subjects. This survey complied with legal requirements and it was approved by the Human Medical and Animal Research Committee of the Hospital das Clínicas of the Federal University of Goiás (UFG - CEP 031/2009 - Amendment 0015).



Characterization of the subjects

Of the 220 caregivers, 168 (76.3%) were female and 52 (23.64%) were male, with the majority being over 40 years old (58.18%). There was a predominance of females, even after women's emancipation and conquests at work. Women, even when they have a job, still take on domestic and care activities in society; these results are similar to other studies 2,4,10.

In addition, an expressive number of caregivers aged over 60 years (n = 28; 12.7%) were observed, a fact that demands greater investments in public health policies focused on this population segment. Older people are increasingly aging actively and they are essential to the core family, especially in the role of caregiver. Similar to other studies, most caregivers reported low family income and schooling 3,10,11.

Regarding the hospitalization unit in which the caregiver provided assistance at the time of the research, 166 (75.5%) were crowded in clinical wards with the average time as a caregiver being 14.6 days. This finding probably reflects successive hospitalizations and the long hospital stay, in which there is a growing demand of caregivers to take care of patients with CNCDs and complications 1.

Study categories

Affective relationships and care

In this category, the testimonies analyzed emphasize aspects related to affective relationships developed during hospitalization, focusing on the dimensions of nursing care that they valued most, such as communication, uniqueness, courtesy, emotional support, client-centered care and the professional availability of nurses. The identification of the nurse as a friend, that is, as an extension of his/her family unit, is identified in some testimonials.

To be a nurse is to be a friend, companion, and sister. It is to participate in the problems of others [...]. (I20)

Nursing is a family because it helps us with care, affection and love, and gives us strength with loving words that make the patient smile. (I130)

However, in this relationship, certain interviewees demonstrated that they expected the nurse to respond positively to their affective yearnings, however without getting involved or showing feelings of anguish and pain to the patients.

The nursing professional is a human being like any other. She suffers the pains of a patient [...]. She cannot show this because it would make the patients worse. (I19)

The nurse is someone who deals with problems that are the same as those of the caregivers, because she feels our feelings and fears and deserves attention for collaborating with our victory, without showing sadness [...] (I64)

Involvement in nursing care is highlighted as indispensable in the care process, representing a measure of approximation between the professional caregiver and the person being treated 7,12. In fact, for nurses to exercise their profession, they require scientific knowledge, psychomotor skills and proactive attitudes, as well as the sensitivity of being with another, in a relationship of co-participation in the care 12.

Nevertheless, when the causes of occupational stress arising from a profession that deals directly with pain, death and health risks are prolonged and the subjects' means of coping are limited, stress can evolve to more serious levels, making the body vulnerable to different diseases 12,13. It is up to the profession, both during training and in their professional activity, to develop skills to face these situations and establish relationships of emotional care, a vital aspect in the therapeutic relationship with the clients under their care 14.

As most of the time, nursing professionals cannot see the health problems they are experiencing 12,13 nor do they associate their symptoms with the demands and expectations of the service, the patient and also the caregivers, it is necessary that health institutions prioritize the development of emotional competence in the teams, using psychoeducational methods. This would enable the professional to deal with the psychological pressure of patients and their families with less burden on their psychic health. The creation of spaces for reflection in the programs of permanent education for health professionals can be a preventive strategy of the institution, as it allows an environment in which to identify and exchange of ideas, propitiating self-knowledge of these professionals and benefiting the carer-care relationship 14,15.

These data corroborate the literature 12-15 and lead to reflection - the nursing professional, because he/she stays long periods with the patient and the institutionalized family, experiences many moments of positive interpersonal relationships, with the creation of healthy bonds and is able to contribute to face the adversities of hospitalization. However, it is necessary for the manager, especially the nurse who manages the hospital unit, to provide moments of relaxation and support to the professional so that he/she can be instrumental in facing the emotional overload experienced in the work activities.

Nursing and the vocational-religious model

This category characterizes nursing care in an essentially humanitarian/charitable way. Caregivers still have a vague and idealized vision of the work of this professional, referring only to the humanitarian dimension, accompanied by ideas of donating care, characteristics that totally meet the technological and scientific evolution of the professional practice of nurses. Still, the caregivers express that there is a maternal vocation for care.

The nurse: without her what would we do in the hospital! I think she even takes the place of mother [...]. (I7)

[...] she is a bit of everything, she is the mother of a sick child, she is the company of an elderly person who has no relative. She is the hand that God extends in the midst of suffering to help those who need it the most. (I27)

The other assertions reinforce the idea and the vocational and religious model of nursing:

Angels sent by God [...] (I79)

You are the present day good Samaritans and you do not care how much you will receive at the end of each month, but rather ease the pains of those who suffer (I108)

The content of the discourses show that the majority of the individuals attribute characteristics of help to the nursing staff, of valorization of the contact with the human being, as a way to satisfy a personal need to help others. The idea of vocation to care may be due to myths of the profession that the nurse is the person responsible for minimizing the suffering of the patient, staying with him as an angel or as a maternal figure. This places the work performed by the nurse in a charitable model, in which the spiritual dimension overlaps with technical-scientific knowledge 16.

These findings reflect how much the nursing profession needs professional improvement programs in the hospital environment, because although it is a profession recognized as science, it has not yet been effectively consolidated among the individuals investigated 16. In this sense, the debate about the professional image is an important opportunity to fill this gap, contributing to the dissemination of the relevance of the profession among the population in general, since informal caregivers share knowledge in the intra- and extra-hospital environments 17.

Professional subalternity

The third category reveals a submission of the nursing work to the medical professional, according to the caregivers.

The lack of knowledge of historical nursing struggles and achievements in search of scientificity and consequently of professional recognition, is revealed in the following discourse:

Being a nurse is like following a cake recipe. The doctor passes the prescription and the nurse puts it into practice. (I30).

The nurse is the doctor's right hand. The doctor says what is needed and the nurse does it to save the patient. (I38)

It is noticed that the professional subalternity marks the perception of caregivers. An understandable fact, taking into consideration that the construction of the nursing image is permeated by historical, socioeconomic and cultural aspects of a historical-religious trajectory of silence and submission. Sometimes nursing and medicine have been parallel in historical development and the nurse was often seen in a dependency-dependent framework, determined by the social, political, economic, and institutional orders 16,17.

In general, the population is unaware of the importance of nursing as a profession in healthcare responsible for fundamental care. In society and in the media in general, there is an image of submission of nursing and nurses to other professionals in the health area, especially the physician 16,17. It should be noted that with the actions of the precursor of nursing, Florence Nightingale, the profession was designed for modern society. In fact, until the 1950s, nursing education in Brazil was centered on hands-on experience. However in the 1960s, nursing sought scientific knowledge through techniques, but its scientific basis was founded on clinical knowledge, and teaching and practice still did not translate the specific knowledge of the profession, favoring the contradictions and the aggravation of the identity crisis in nursing 17.

Recently, nursing has been progressively producing and translating knowledge based on scientific evidence, articulated with the classic and the emergent, in order to base its interventions of the care process in all life cycles, from conception to death 17,18. In addition, it is necessary that this knowledge is divulged to all segments of society, showing that the profession has a scientific rigor and social utility 18.

In this process of paradigm change, it is imperative to know/remember and value of the history of the profession, to foster the production of evidence-based knowledge, to promote discussions about the current academic and professional education, to encourage the protagonist role of nurses and even to incite the political participation of nurses, encouraging the organization of the class 19. It is necessary that the nurse, during his/her interventions, clarifies the role played by their professional category, a role that is very important in the process of promoting health, preventing disease, in recovery of the health of individuals and rehabilitation, of families and collectivities.

Customer satisfaction and care

This category demonstrated that the caregivers were satisfied with the assistance received in the health service under study with the negative evaluation of the service being minimal. This was possibly because the clientele attended in this hospital predominantly have low socioeconomic conditions and associate the quality of the assistance received with accessibility to a health service considered a referral center in the central region of Brazil.

Thus, the evaluation is predominantly focused on the interpersonal relationship between the patient and the person who provides healthcare to the detriment of other factors that contribute to the quality of health services such as professional competence, treatment offered, norms of the institution and coexistence in the hospital setting, accessibility, physical structure, efficacy, therapeutic efficiency and resolubility.

It is seen that caregivers perceive/evaluate care in only two dimensions: one in the perspective of care as a technical activity and the other as emotional support. Some caregivers see that nursing can add emotional care to technical care during care activities.

[...] Nursing is essential within a hospital because every patient needs someone to give them their medications and change their dressings on time and so it is a special person. (I33)

[...] to be born, to grow and to study, and to graduate in nursing in order to treat people with a lot of affection because they have to know how to puncture a vein and know what the patient has so as not to miss the medication and always be humble. (I159)

Again, we see that even when the caregivers evaluated the service provided by the institution's professionals, they point out only the technical and emotional skills of nurses to the detriment of scientific knowledge. This finding ratifies the need to guide these opinion makers about the knowledge and duties of the nursing staff, so that society understands the articulation of the basic principles of the profession with scientificity.

Also in this category, caregivers reported some professional skills expected during the delivery of care by the nursing staff. These included the ability to include caregivers in care plans, in particular, to guide them regarding the entire health-disease process of their relative.

[...] the nurse is the right arm of the caregiver; I mean that he is our support. (I11)

A professional who is able to help the patient to recover and pass appropriate information to the family. (I28)

Nursing staff is important for our family members because it guides us on how to care for them [...]. (I59)

Currently, among scholars, it seems to be unanimous that nurses need to recognize and take care of a care plan not only for the patient under their care, but also for their family network 2,5,8,20,21, especially for individuals who are primary caregivers of adult patients with chronic diseases 5,7. Health professionals need to understand that family members also have their needs to be met. Moreover, it is necessary to prepare them to participate in the care of the family member during hospitalization and after discharge. Thus, the receiving of the family and exchange of information means sharing ideas and care, incorporating the observations made by relatives in the patient's care plan 8,13.

The family member identifies the nurse as the professional responsible for the training and guidance in respect to care, and expects to receive information from this professional, thus implying attention and care 6-8,10. Thus, it is extremely important to implement health education projects to qualify individual caregivers to perform activities of daily living in the hospital, something still incipient in Brazil but developed over the last 11 years in a hospital in the central-western region 22. Professional training programs to qualify informal caregivers as formal caregivers fit for the job market have been discussed in other countries 20.



The results of this study show that the caregivers do not know about nursing care in the care of patients and caregivers of adults with chronic diseases. Caregivers still have a restricted view regarding some aspects related to the nursing profession, still valuing professional subalternity and its charitable-religious character.

The findings of this study can help the nurse to construct strategies to approximate the binomial caregiver/patient, as well as to provide information to perform health education activities in the hospital environment in order to improve the visibility of nursing. Due to the importance of this theme, it is imperative to continue research with studies that reveal other realities experienced by primary caregivers of individuals from different clinical specialties and different places in the state and country.

The study presents limitations due to the methodological design, which restricts the reach of the findings to this particular population, making it impossible to establish comparisons and generalizations. Although the results obtained portray a specific reality, it is expected that they will provoke discussions and investments in valorization processes by nurses in respect to their professional practice.



1.World Health Organization. Noncommunicable Diseases Progress Monitor 2017. Geneva (Swi): World Health Organization; 2017. [cited in 2017 set 24]. http://apps.who.int/iris/bitstream/10665/258940/1/9789241513029-eng.pdf

2.Oldenkamp MW, Rafael P M, Hagedoorn, M, Ronald P, Smidt N. Survey nonresponse among informal caregivers: effects on the presence and magnitude of associations with caregiver burden and satisfaction. BMC public health. 2016; 16(1):480-91.

3.Wolff JL, Spillman BC, Freedman VA, Kasper JD, A national profile of family and unpaid caregivers who assist older adults with health care activities. Jama Intern Med.2016; 176(3): 372-9.

4.Rocco P. Informal caregiving and the Politics of Policy Drift in the United States. Journal of Aging & Social Policy. 2017; 1(20):413-32.

5.Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. Jama. 2014; 311(10):1052-60.

6.Ministério da Saúde (Br). Núcleo Técnico da Política Nacional de Humanização. HumanizaSUS: visita aberta e direito a acompanhante. Brasília (DF): Secretaria de Atenção à Saúde; 2007.

7.Passos SSS, Pereira A, Nitschke RG. Quotidian of accompanying family members in an environment of care: the emergence of hospital tribes. Rev esc enferm. 2016; 50(3):466-73.

8.Borsato FG, Vannuchi MTO, Haddad MCFL. Quality of nursing care: patient environment in a medium-complexity public hospital. Rev enferm UERJ. 2016; 24(2):e6222.

9.Bardin L. Análise de conteúdo. Tradução de Luis Antero Reto e Augusto Pinheiro. São Paulo: Edições 70. 2011.

10.Meira EC, Reis LA, Gonçalves LHT, Rodrigues VP, Philipp RR. Women's experiences in terms of the care provided to dependent elderly: gender orientation for care. Esc Anna Nery. 2017; 21(2): e20170046.

11.Rodríguez-González AM, Rodríguez-Míguez E, Duarte-Pérez A, Díaz-sanisidro E, Barbosa-Álvarez Á, Clavería A. Estudio observacional transversal de la sobrecarga en cuidadoras informales y los determinantes relacionados con la atención a las personas dependientes. Aten primaria. 2017; 49(3):156-65.

12.Ferreira DKS, Medeiros SM, Carvalho IM. Psychical distress in nursing worker: an integrative review. J. res fundam care online. 2017; 9(1):253-8.

13.Alvim CCE, Souza MMT, Gama LN, Passos JP. Relationship between the work process and mental illness nursing staff. Rev Fluminense de ext universit. 2017; 7(1):12-6.

14.Ferreira HP, Martins LC, Braga ALF, Garcia MLB. The impact of chronic disease on caregivers. Rev bras clin med. 2012; 10(4):278-84.

15.Fagundes NC, Rangel AGC, Carneiro TM, Castro LMC, Gomes BS. Continuing professional development in health for working nurses. Rev enferm UERJ. 2016; 24(1):e11349

16.Avila LI, Silveira RSD, Lunardi VL, Fernandes GFM, Mancia JR, Silveira JTD. Implications of the visibility of professional nursing practices. Rev Gaúcha Enferm. 2013; 34(3): 102-9.

17.Martins MJR, Fernandes SJD. The visibility of nursing giving voice to the profession: an integrative review. J Nurs UFPE On line. 2014; 8(7), 2422-33.

18.Luden A, Teräs M, Kvist T, Häggman-Laitila A. A systematic review of factors influencing knowledge management and the nurse leaders' role. J Nurs Manag. 2017; 25(6):407-20.

19.Lessa ABSL, Araujo CNV. Brazilian nursing: a reflection about political activity. Rev Min Enferm. 2013; 17(2):481-7.

20.Phillips SS, Ragas DM, Hajjar N, Tom LS, Dong X, Simon MA. Leveraging the experiences of informal caregivers to create future healthcare workforce options. J Am Geriatr Soc. 2016; 64(1):174-80.

21.Yuen EYN, Knight T, Ricciardelli, LA, Burney S. Health literacy of caregivers of adult care recipients: a systematic scoping review. Health and social care in the community. 2016; 2(4)1-16.

22.Matos MA, Neves JÁ, Dias MA, Boccanera NB. Projeto acompanhante: cuidando do amigo cuidador. In: Anais do IV Congresso de Pesquisa, Ensino e Extensão; 2008. Out 6-10; Goiânia, Brasil. Goiânia (GO): Universidade Federal de Goiás; 2008. p.7905-9.

Direitos autorais 2017 Andressa Cunha de Paula, Paulie Marcelly Ribeiro dos Santos Carvalho, Claci Fátima Weirich Rosso, Márcia Maria de Souza, Nélio Barbosa Boccanera, Marcos André de Matos

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