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Perception of the primary caregiver on nursing interventions in terminally ill patients


How to cite this article:
Guerrero-Nava JA, Romero-Quechol G, Martínez-Olivares M, Martínez-Martínez RA, Rosas-Reyes SC. Percepción del cuidador primario sobre las intervenciones de enfermería al paciente en estado terminal. Rev Enferm Inst Mex Seguro Soc. 2016;24(2):91-8.

Perception of the primary caregiver on nursing interventions in terminally ill patients

Jorge Antonio Guerrero-Nava,1 Guillermina Romero-Quechol,2 Marilin Martínez-Olivares,3 Rita Apolonia Martínez-Martínez,1 Sandra Cecilia Rosas-Reyes1

1Jefatura de Enfermería, Hospital General de Zona 48; 2Unidad de Investigación Epidemiológica y Servicios de Salud, Coordinación de Investigación en Salud, Centro Médico Nacional Siglo XXI, 3Dirección de Enfermería, Hospital de Especialidades, Centro Médico Nacional La Raza. Instituto Mexicano del Seguro Social, Ciudad de México, México

Correspondence: Jorge Antonio Guerrero-Nava

Email: gogox1@live.com.mx

Received: July 8th 2014

Judged: January 13th 2015

Accepted: May 19th 2015


Introduction: Life expectancy in Mexico has increased. This means that the percentage of people with chronic and incurable diseases raised and undoubtedly leads to life’s end. This will have an impact on caregivers, keeping them in crisis and vulnerable in multiple situations.

Objective: To analyze the perception of the primary caregiver on nursing interventions in terminally ill patients.

Methods: Cross-sectional, analytical study in 39 primary caregivers of hospitalized patients. It was designed a questionnaire with 37 items and two sections on sociodemographic variables, communication, nursing interventions and behavior facing the end of life, validated by experts 3/3, with a Cronbach’s alpha of 0.94 in reliability. Descriptive statistics, as well as chi square test and Kruskal Wallis test were used.

Results: The caregivers were women in 79.5%, 56.4% daughters with age range 40-60 years, 59% married, 53.8% housewives and 56.4% live in the same house as the patient; the best perceived dimension was communication with 51.3%, the least favored was the behavior facing the end of life; the overall perception was fair, with 87.2%.

Conclusion: The results show areas of opportunity in end-of-life care, especially in the behavior before the end of life.

Keywords: Family caregivers; Terminally ill; Nursing care

The hospital environment has seen an increasing number of patients with terminal disease, which undoubtedly leads to the end of their lives in a relatively short time. Moreover, the impact and fatigue that the situation generates on the primary caregiver is clear, from the time they are made aware of the terminal situation of their family member until their death, as is the insufficient attention given for the care of both basic and emotional needs, because not only the patient experiences loss and grief, which keep them in a constant crisis and vulnerable to multiple situations.

Because of the demographic and epidemiological transition, the life expectancy of the population in Mexico has increased, making it clear that the population has aged. This means that the percentage of people with chronic degenerative and incurable diseases increases, and because of this the number of patients needing a system of help and support goes up every day, i.e., they need care to do activities that they cannot carry out themselves, and they also need them to be completely responsible for their care; the people who do this work are called primary caregivers.1

The most important findings, found in studies on the primary caregiver from different perspectives, suggest that the term acquires several dimensions in that the link is identified in which the person provides care, and their actions refer to a system of help and support.2 In 1999 the World Health Organization (WHO) conceptualized the primary caregiver as the person in a patient’s environment who voluntarily assumes the role of responsibility for them, in a broad sense; this individual is willing to make decisions for the patient, decisions on the patient’s behalf, and to cover basic their needs, either directly or indirectly.3

The primary caregiver is usually a family member, although when a disease occurs unexpectedly in the family, the caregiver often has work outside the home, so they exercise this role indirectly. In either situation, the caregiver attends the physical and emotional basic needs of the individual who has lost some or all autonomy, and extends their support to them not only at home but also in a health facility or hospital.

The degree or level of support that a patient requires depends on the disease progress and complications, which means having the knowledge to do tasks more efficiently.4 Assuming this support system involves implementing complex activities and adapting to a different lifestyle for long, indefinite periods of time.

Obviously the primary caregiver does not have health training, nor do they receive financial remuneration, and they fulfill this role without submitting to the rules of schedule or procedures,5 a situation that emerges from a sense of obligation merged with emotion, invariably from the close bond of coexistence.

Playing this role creates stress, and physical and emotional wear and tear, which induce a state of permanent crisis in the caregiver;4 therefore, it is necessary to face this reality of vulnerability in which the primary caregiver exists with family and professional support, in order to decrease the risk of triggering an overload characterized by multiple social, spiritual, psychological, emotional, biological, and economic manifestations, which, in many cases, result in the abandonment of work, personal projects, the acquisition of diseases, and even the abandonment of the patient.

The situation of crisis, stress, and mental and physical exhaustion in the primary caregiver of a terminal patient is compounded by multiple factors, including the amount of information they receive (much bad news that can barely be understood), their patient’s experience of psychophysical fatigue, the undeniable manifestation of feelings and emotions that are generated in this stage of life, all combined with family disputes, work or school conflicts, and insufficient rest.

This latent reality should not go unnoticed by the nurse, since they are in the closest contact with the caregiver-patient dyad; however, if nurses overlook that reality, it is very likely that instead of having a primary caregiver to help improve the quality of life during the death of their terminally ill patient, there may be two adults whose health is going downhill in tandem.

Health care for terminally ill patients is a right recognized by international organizations,6 and despite major technological advances in medicine in recent years, it is a major public health challenge, since the situation of these patients causes loss of autonomy, a significant demand for care, and intense suffering; therefore, a caregiver is needed to help them do their daily activities.7

According to the WHO, in their 2010 report on the status of noncommunicable diseases, the number of deaths is expected to rise each year, especially in low and middle income regions,8 which shows us that the number of caregivers with terminally ill patients will increase by the same proportion.

The proposed criteria for the definition of patients with terminal disease are:

  • Having an incurable, advanced, and progressive disease.
  • Having a life prognosis limited to six months.
  • Little chance of response to specific treatments.6

These features may be present in cancer and in varying degrees in the final stages of specific organ failure (kidney, heart, liver, lung, etc.), as well as in situations of acquired immunodeficiency syndrome (AIDS).

It is essential not to label a potentially curable patient as terminally ill. It is a very complex situation that produces a high demand for care and support, to which we must respond appropriately.9

Nursing interventions during this stage focus on the care provided by the nurse during the last weeks or days of the patient’s life, showing a characteristic clinical picture particular to the situation of the end of life in the last days, i.e., impaired physical and mental state, severe weakness, prostration, decreased level of consciousness, delirium, and difficulties in communication, as well as in the intake of both food and medication, which are related to the decreased level of consciousness.9

These interventions are defined as any treatment based on knowledge and clinical judgment made by a nurse to favor the expected outcome of the patient.10

Nursing interventions include both direct and indirect care, aimed at the individual, family, and community; for example, treatments implemented by nurse practitioners, physicians, and other care providers.10

Under these circumstances, the aim of nursing interventions will not be focused on curing the patient; it will be focused on helping them die with dignity and make the most of their available lifetime, so the primary caregiver will be included in the care plan to enable them to meet the emotional and spiritual needs of the patient and the caregiver themselves, promoting self-care, involving family, and offering support both formal (social and health resources) and informal (associations, support groups, volunteering).11

Nursing care is characterized by a holistic approach that includes planning specific interventions for the terminal stage of life. These must be aimed not only at patient care but should also involve the primary caregiver to ensure their wellbeing and greatly improve the patient’s quality of life during hospitalization; this in order to get to know their feelings about the disease and identify their priorities to prevent the implementation of measures that go against their will; thus, a high percentage of primary caregivers will benefit by being included as a useful and important element in the care and treatment of the patient.

This study refers to perception as a basic process of mental activity and an essential part of information processing, i.e., as a subjective state in which an individual interpretation is created, from which an abstraction of the external world is made by establishing the construction of judgments and concepts that specify external reality, which, in turn, is influenced by the ability of our senses, knowledge, and experience. Perception comes into play when a phenomenon, event, or situation is relevant or significant, and generates a state of clear and lucid consciousness that enables action with the highest degree of rationality and belief.12

This cognitive process of individual interpretation of the external environment depends not only on real abstractions, but imagined abstractions, the way in which people have understood the information they have accessed, beliefs, and the course of the disease of the terminal patient.

It is important to consider the representation and interpretation of qualities and the way the primary caregiver makes their abstractions from nursing interventions from their position as a co-receiver. For this we must take into account that this person is from outside the hospital environment and is immersed in a process of crisis generated by the state of health of the terminal patient. These issues must be considered in order to appreciate the performance of the nurse in the latter stage of life from this perspective. The perception of the terminal patient’s primary caregiver of nursing interventions is analyzed for this reason.


A cross-sectional study was conducted in a secondary hospital of the Instituto Mexicano del Seguro Social (IMSS).

The unit of analysis was the primary caregiver and the inclusion criteria were: a terminal patient being in the Internal Medicine department with over 24 hours of stay. It used a non-probabilistic convenience sample design. The members of the sample were selected for being conveniently available on site and at the right time. A total of 39 primary caregivers were obtained who met the inclusion criteria.

To measure perception, an instrument was designed that consists of two sections: the first included socio-demographic variables and the second included three dimensions: communication, nursing interventions, and behavior faced with terminal illness.

The questionnaire was submitted to validation by an expert panel 3/3, in which three specialists in thanatology participated. Initially it consisted of 46 items and 9 of them were eliminated upon validation, and the modification of certain key words was suggested, making a total of 37 items distributed in the dimensions. This instrument was assessed using a Likert scale with five response options with the following values: 5 = always, 4 = almost always, 3 = rarely, 2 = almost never, and 1 = never. Statistical tests showed a reliability of 0.94 using Cronbach's alpha coefficient.

The section of sociodemographic variables consisted of a total of 7 pre-coded questions; communication, with four items; nursing interventions with 19 items, and, finally, behavior faced with terminal illness with 14 items.

Three intervals were formed for the evaluation of perception: from 126 to 185 points was good, 63 to 125 fair, and less than 62 poor. Each item was created as a question in order to obtain overall perception and perception for each dimension.

Descriptive statistics was applied for statistical analysis, and inferential statistics helped by using chi-squared test and Kruskal Wallis test to find out whether there was a relationship between sociodemographic variables and the primary caregiver’s perception.

The study participants were identified through coordination with the floor heads of the ​​Nursing area of Internal Medicine, as well as social workers assigned to these services; the direct approach to the primary caregiver was initially done as follows: the nurse introduced themselves to the caregiver and subtly inquired if the medical area had already touched on the topic of terminal disease, to not cause a crisis by speaking of the death of their ill family member. Once it was confirmed that the primary caregiver was aware of the terminal disease, the implementation of the instrument was done in a comfortable space that also favored the individuality and trust of each caregiver, which yielded a more frank answer to the questions.


39 caregivers were interviewed and their sociodemographic characteristics were as follows: 79.5% of them were women, age ranged between 41 and 60 years, 56.4% were the patient’s daughters, 59% were married, 38.5% had a high school degree, and 53.8% were homemakers.

Communication was rated by 51.3% as good, by 43.6% as fair, and by just 5.1% as poor. Nursing interventions were considered poor by only 2.6%, and as fair to good by 48.7% of primary caregivers. 7.7% of caregivers considered the behavior faced with terminal illness as good, 28.2% fair, and 64.1% poor.

The overall perception of the primary caregiver was assessed as good by 87.2% (Figure 1). In comparison between dimensions in descending order, the one evaluated best was communication with 51.3%, perceived as good; followed by nursing interventions, with 48.7% and perceived as fair; and with 64.1% perceived as poor, the behavior faced with terminal illness (Figure 2).

Figure 1 Overall perception of the primary caregiver of the terminal patient regarding nursing interventions. Source: Instrument for perception of the primary caregiver of the terminal patient regarding nursing interventions

Figure 2 Perception of the primary caregiver of the terminal patient regarding nursing interventions by dimension. Source: Instrument for perception of the primary caregiver of the terminal patient regarding nursing interventions

The relationship of the level of perception of the primary caregiver with age and occupation was statistically significant (Tables I and II).

Table l. Perception of nursing interventions in relation to primary caregiver’s age (n = 39)
Level of perception Age (years) p*
20-40 % 41-60 % > 60 %
(n = 4)
1 2 3 8 - - 0.001
(n = 34)
7 18 21 54 6 15
(n = 1)
1 3 - - - -
*Chi-squared was used for statistical significance
Source: Instrument for perception of the primary caregiver of the terminal patient regarding nursing interventions

Table II. Perception of nursing interventions in relation to primary caregiver’s occupation (n = 39)
Level of perception Occupation p*
Homemaker % Employee % Retired % Unemployed %
n = 4
3 8 1 2 - - 0.000


n = 34

17 44 11 28 1 2 5 13
n = 1
1 3 - - - -
*Chi-squared was used for statistical significance
Source: Instrument for perception of the primary caregiver of the terminal patient regarding nursing interventions

The sociodemographic profile of primary caregivers who participated in the study was 79.5% women. This is consistent with the findings of Rivera-Alvarez et al.,13 who report that 56.2% of caregivers are female, but who differ regarding age, since they found more young adult caregivers aged between 25 and 34 years, whereas this study found mature adult caregivers aged 41 to 60 years old. Regarding other sociodemographic characteristics, we found that most are women, married, homemakers, with high school degrees, traits that match the study by Cardona-Arango et al.,5 who described that 53.5% of their caregivers were married women, 57.7% homemakers and with high school degrees. As for the relationship, this is different from the findings of Mendoza-Lopez et al.,14 who showed that in all cases the caregivers were first-degree relatives, while in this study, 12.8% of caregivers were found to be nephews, nieces, and daughters-in-law. 

The results obtained in this study show that the primary caregivers of terminally ill patients perceive the communication established with the nursing staff as good, so it follows that the information provided by nurses at this stage of life, although not pleasant, is transmitted properly.

Regarding nursing interventions, these are perceived as fair, which leads us to consider that the independent actions and care, i.e., those of the nurse that are practiced during this stage, are acceptable but with prospects for improvement, especially if we consider that approaching primary caregivers reduces suffering, and that nursing staff is in the greatest contact with the caregiver-patient dyad.

One of the key points for the perception of the primary caregiver of the terminal patient is the behavior faced with terminal illness. Unfortunately, the group of primary caregivers interviewed perceives it as poor. This indicates that the feelings, emotions, and desires for spiritual or religious care, as well as fears and anxieties, are not being attended, which fosters insecurity in transcendent decision-making in the primary caregiver and family, who fail to prioritize the needs of the patient, making their acceptance of death difficult. As shown by the results of the Sarmiento-Medina et al.,15 the request for support is motivated by perceived poor conditions, religious dilemmas, abandonment of the patient, and treatment obstinacy.

In agreement, Mendoza-Lopez et al.14 emphasize that the primary caregiver’s reactions are very similar to those of the terminal patient, with fear, loneliness, and anxiety about the uncertainty of the future.

This lack of attention to emotions, feelings, fears, and anxieties is directly related to the fact that the death of a patient becomes a difficult situation for the nurse to address, even if it is an everyday event in the hospital environment; this due to multiple factors that help evade confrontation with the suffering of the person dying and their primary caregiver. This statement is consistent with what is shown in the study by Manuel-Quintana et al.,16 whose results show the health team’s difficulties to attend terminally ill patients, especially how to give them information on their own condition, so an intense need is perceived for direct work with the health team with the intention of reflecting and understanding the importance of managing emotions regarding death.


The objective of the study to analyze the perception of the primary caregiver of the terminal patient was achieved.

Based on the perception of the primary caregiver of terminal patient regarding nursing interventions, we conclude that the overall perception is fair, the dimension with the best perception is communication, and the least favorable perception is of behavior faced with terminal illness.

The results show areas of opportunity for nurses in end-of-life care, especially in behavior faced with terminal illness, a transcendent aspect if we consider that the nurse is who remains in greatest care contact with the patient, and it is essential to rescue the human component and to complement it with technical nursing care, especially in this situation where the caregiver is immensely vulnerable.

On the other hand, the WHO predicts that the number of deaths will increase each year, and therefore too the number of caregivers who live in this situation, so training of nursing staff will be needed in this area to provide holistic care and achieve a balance between scientific knowledge, technical skills, and professional values, in order to project an identity to our users and among the multidisciplinary health team.

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