Concepts of care, caregiver and types of caregivers

The word care originates from the Latin cura which, in its oldest form, was written coera and was a term used in a context of love relationship and friendship. The definition made by Collière, quoted by Monsalvo,¹⁵ points out that care is the “act of maintaining life ensuring the satisfaction of a set of indispensable needs, but which are diverse in their manifestation. The different possibilities of responding to these vital needs create and establish life habits specific to each group or person”.

The concept of care has philosophical and pragmatic implications, and evolves alongside life, culture and society. Hidalgo and Altamira,¹⁶ refer to “care is essential to the human being”, enabling human existence.

On the other hand, a caregiver is defined as the person who assists or cares for another who is affected by any type of disability, disability or disability, which prevents him from developing normally vital activities and/or social relationships, taking charge, on his own or on request, of caring for this person with a degree of dependence. Therefore, the caregiver is considered the resource, instrument and means by which specific and specialized care is provided in order to meet the needs of the person cared for, acquiring the commitment to preserve the life of the other. ¹⁷

Specifically, four types of caregivers are identified, depending on the time and training they have. Depending on the time spent on caregiving, there are two types of caregivers, the primary and the secondary. The primary caregiver is responsible for most of the care of the person, usually lives in the same home or very close to it and has a very close family relationship; the secondary caregiver leaves the least part of the time in charge of the patient, providing care for small periods. ¹⁸ According to specialized training, the informal and formal caregiver are distinguished: The informal caregiver is a person who is part of the family environment and collaborates to a greater or lesser extent in the care, but does not have specialized training; the formal Caregiver has specialized or academic training to care for the patient, being financially recognized for it. ¹⁹

According to the above, it is known as an informal primary caregiver to the person who daily, without having specialized training, is responsible for helping in the basic and instrumental activities of the person who, for any health reason, cannot perform them by himself. ^(19,20 They have certain common characteristics: to provide care necessary for many years and in long daily hours, in order to guarantee a better quality of life for the person cared for, in addition, in many cases, it also performs tasks of maintenance of the home, so it is mostly associated with women, culturally linked to domestic chores. ⁽¹⁹

These informal primary caregivers do not receive financial remuneration for the help they offer, nor do they have training for care, however, they have a strong commitment to do it, due to the degree of affection or kinship they have with the person cared for. This implies that they themselves consider carrying out the care with great rigor and without limit of schedules, being then an informal, kind and free support of relatives and/or relatives, even though other agents or people from networks that do not belong to the family can also play this role. ¹⁸

Informal caregiver health

In the exercise of care, needs arise that the caregiver must satisfy from the interaction with the physical, social and cultural environment that surrounds him, in a continuous process of assimilation and adaptation to maintain his own health. It also presents the need to obtain adequate economic and social resources or to plan care, adapt the environment to ensure the success of the work, facilitate care tasks,²¹ all issues that, if resolved, also favor the integral maintenance of their own health.

Because of their varied functions, the caregiver should perform physical exercise and rest, maintain a correct diet, express their emotions, be supported by the family, receive information and guidance, continue their own life project, have moments of recreation and leisure, receive specialized psychological care and financial help. Consequently, it is essential that the caregiver adopts and maintains self-care practices to solve these needs and ensure their well-being and adequate quality of life. ²¹

The provision of care to the other is still a subject of debate, devoid of precepts that warn how far informal main care goes, being difficult to frame, because the caregiver self-imposes schedules and demands that are the result of the degree of affection and self-denial towards the person cared for. In this way, reports of morbidity and mortality of caregivers are related to the conditions under which they provide care. ²²

Likewise, it can be said that this work falls especially on women, daughters, middle-aged married, with an average schooling, dedicated to the role of care for more than 6 years, provides care 7 days a week with dedication of long daily hours and in addition to care they work mostly as housewives. Caregivers report having health problems and report a regular or poor perception of their health. ²³ They present health problems reporting mostly two comorbidities, the most frequent being arterial hypertension and diabetes mellitus. Among the socioeconomic problems mention family conflicts, seeking support, loss of social relationships, lack of free time and among the psychological problems identified are anguish, irritability and fear. ^(24,25

Several studies indicate that caregivers present an increase in the number of medical, nursing and polypharmacy consultations, due to the presence of overload and Burnout syndrome,^{(26, 27)} also noting that those who dedicate a lower percentage of hours to self-care present intense overload, which, together with the failure in self-care, causes them physical damage, emotional and decreased quality of life. Caregivers recognize that they do not have enough time for themselves because of the time they spend caring for the family member.^28,29

A typical example of this overload is the care of the elderly, which presents significant functional losses in the performance of basic and instrumental activities of daily living, with low or no hope of recovery, being able to say, that the more activities the caregiver supplies, the greater the dependence of the elderly person.³⁰ It is a group of people who must be provided with long-term care, so they need essential informal primary caregivers to cover this care. ³¹

Theoretical bases of self-care: deficit, requirements and agency

Self-care is a concept based on the Nursing Theory of Self-Care Deficit (TEDA), developed by Dorothea Orem in 1969. It has been used as a theoretical and philosophical basis to promote self-care practices for the benefit of one's own health and well-being, being considered a learned activity, which has the clear objective of adopting a behavior in specific situations of life, directed by people about themselves, towards others or towards the environment, in order to control the factors that affect the development and functioning in favor of the well-being of health and life. ³²

The externally oriented self-care actions are four: 1) sequence of action for the search for knowledge; 2) sequence of action seeking help and resources; 3) interpersonal expressive actions; and 4) sequence of action to control external factors. Similarly, internally oriented self-care actions are twofold: 1) sequence of action of resource use to control internal factors; and 2) sequence of action for self-control (thoughts, feelings, orientation) that allows us to regulate internal factors and external orientations of oneself.

The understanding of the concept of self-care in nursing refers to a voluntary and intentional action with internal and external orientations that facilitates the professional to acquire, develop and perfect the skills to ensure valid and reliable information of the self-care learning systems of people. At the same time it allows them to analyze the descriptive information of this and make judgments of how they can be helped, in this case caregivers, in the learning of therapeutic self-care. ³³

However, based on this theory, self-care is currently defined as the set of voluntary and intentional actions that people carry out to control internal and external factors, translating into a behavior that they must assume responsibly, putting into practice activities of promotion and conservation, which are carried out with the aim of maintaining the functioning, personal development and well-being, where the nursing professional plays an important role when, when conducting health education,³⁴ he emphasizes the value of self-care.

Important in this theory are the requirements of self-care and refer to the necessary actions that every human being must perform for the control of the functional and developmental aspects in his life, either continuously or in specific contexts and conditions; represent the formalized goals of self-care and desired outcomes. Three types of requirements are identified: universal, developmental and health deviation. ³⁵

Universal requirements are associated with the process of life and human functioning, common in all people, namely: 1) the entry of air; 2) the intake of water and food; 3) urinary and intestinal elimination; 4) the balance of activity and rest; 5) the balance between loneliness and social interaction; 6) the prevention of risks to life and the promotion of human functioning and interaction in groups. ³⁵

The development requirements are internal specialized expressions, associated with the process and the specific conditions of the states of development of people, promote the necessary conditions for life and maturation and, in turn, prevent the appearance of adverse conditions, eliminating the effects of these at any time of the process of growth and development of the human being.³⁶ They are subdivided into three: 1) provision of conditions that encourage development; 2) involvement in self-development; 3) prevention or overcoming of the negative effects that living conditions and situations may have on human development.

It is important to emphasize that among the universal requirements and those of development are the “basic conditioning factors”, which are internal and external demands, whose foundation is in the nature of human beings, as they are, considering age, sex, state of development, state of health, sociocultural factors, factors of the health care system, family system, pattern of life, environment and available resources.³⁷ They represent a fundamental axis of nursing, because it tries to identify the gap or deficit between the potential capacity for self-care and these demands, in such a way that universal and developmental requirements are met, thus limiting deviations in health. ³³

Finally, there are the requirements of deviation from health, linked to the health states associated with those disturbed functions, which is reflected when the sick person suffers an injury or has disabilities, which forces him to seek help. In case of being exposed to factors that determine a pathological state and is aware of the effects and consequences of this state, he must accept himself and learn to live with it, under diagnostic and therapeutic measures that lead to a lifestyle that promotes personal development. ³⁷ Once this deviation occurs, the person has a "therapeutic demand for self-care" that merits the support provided by the nursing staff, in order to cover or satisfy the requirements of self-care, in relation to the conditions and circumstances themselves. ³⁴

The self-care agency represents the set of knowledge, skills, abilities and motivation that people must possess to exercise care for themselves, therefore, people who have a developed self-care agency know how to meet their own health needs. ³³ This self-care agency is a complex structure, composed of three hierarchical levels: 1) foundational capacities and dispositions; 2) power components and 3) self-care operations.

The foundational capacities and dispositions are grouped into two levels: the first, considers the sensation (proprioceptive and exteroceptive), learning, exercise and work, regulation of the position and movements of the body and its parts; while the second, considers attention, perception and memory. ³⁸

Regarding the components of power, these are 10 specific capacities related to the ability of the person to commit to self-care: 1) ability to remain attentive and vigilant in relation to the self as an agent of self-care, as well as to the internal, external conditions and significant factors for self-care; 2) controlled use of available and necessary physical energy to initiate and continue self-care operations; 3) ability to control the position of the body and its parts in executing the movements required to initiate and complete self-care operations; 4) ability to reason within a self-care frame of reference; 5) motivations to goals oriented to self-care, consistent with life, health and well-being; 6) skills to make decisions about self-care and carry out actions; 7) ability to acquire technical knowledge about self-care, to retain it and to operationalize it from authorized sources; 8) possession of a repertoire of cognitive, perceptual, manual, communicational and interpersonal skills, appropriate to carry out self-care operations; 9) ability to separately order self-care actions in previous and subsequent systems of action to achieve the regulatory goals of care; 10) ability to carry out self-care operations in a consistent manner, integrating with relevant aspects of personal, family and community life. ³⁸

In the case of self-care operations, these are subdivided into three types: estimates, where the conditions and individual and environmental factors of importance for self-care are evaluated; the transitional ones, in which decisions are made about what should and can be done to improve it and, finally, the productive ones, where the measures are executed to satisfy the requirements of self-care. ³⁸

All the above shows that the self-care agency implies a dynamic and participatory process on the part of people, through which they discern about the factors that must be controlled to contribute to self-regulation itself and where it decides what it can and should do regarding the latter. This also implies reflecting on specific capacities and responsibility in the care of one's own health, in order to satisfy the requirements of self-care over time to maintain and/or improve health. ³⁹

Thus, the self-care agent is the person who possesses these skills, but when self-care actions must be performed by another person it is called the dependent care agent, that is, people responsible for doing everything for dependent individuals, mainly infants and older adults with motor, sensory and cognitive limitations. ⁽³⁹ Consequently, the informal primary caregiver is essentially a dependent self-care agent when providing care to the dependent older adult.

Implementation of caregiver care programs in Latin America

In Latin America and the Caribbean, countries such as Costa Rica, Colombia, Panama and Peru have specific legislation that grants rights to caregivers. ⁴⁰

Likewise, several countries have strategies, plans and programs: in Ecuador the informal primary caregiver of people with disabilities receives the Joaquín Gallegos Lara Bonus (USD 240 per month). In Chile, the Home Care Program for people with severe disabilities received (USD 35 per month) was implemented. Costa Rica provides benefits for caregivers of terminally ill people. Uruguay has a national care system project, a pilot project for partial support for caregivers of dependent people. In turn, Argentina, Brazil, Colombia, Cuba, Mexico and Paraguay have training programs for caregivers. ⁴⁰

In addition, Argentina, through the Ministry of Social Development of the Nation, has developed a National Registry Program for Home Caregivers, with the aim of knowing the people who carry out this activity and, at the same time, providing gerontological training that ensures effective care for the elderly. ⁴¹

Ecuador, in 2011, through the Ministry of Public Health (MSP), delivered the Manual for caregivers of the dependent Older Adult, whose central axis is to educate the caregiver to develop this work. In its content there are some important elements that point to the care of the caregiver, since together with the Ministry of Economic and Social Inclusion (MIES), it works on projects and training programs for informal primary caregivers,⁴² and has achieved the recognition of home work that includes every person who performs the work of caring for the other and recognizes the right to social security to every person who perform unpaid domestic work, including caring for an immediate family member. ⁴³