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Introduction
Aging is a gradual and irreversible change in an individual’s structure and function, which occurs due to the passage of time at the psychobiological level. It is considered a process, and old age is viewed as a stage of the human life cycle. Thus, it is related to a heterogeneous transition that depends on how individuals organize their lives, which may be based on historical and cultural circumstances, the incidence of diseases, and the interaction between genetic and environmental factors 1.
In Colombia and Brazil, an older adult is considered to be someone who is sixty or older 2. In both countries, the caregivers are people who may or may not be family members and care for the ill dependent older person as part of their paid or unpaid daily activities. The caregiver’s objective is to assist the elderly in their activities, such as feeding, personal hygiene, daily medications, accompanying them to health services, and other actions required daily 3-4.
This global phenomenon has increased significantly recently, from 770 million people aged 60 or older to 900 million in 2015. In 2020, it was estimated that this number would reach one billion; by 2050, it will come two billion, of which 80 % will be in countries with medium and low per capita income 5-6.
In Brazil, 19.2 million people aged 65 or older were registered in 2018, and in 2060 this number is estimated to reach 58.2 million older adults 7. In Colombia, there are estimated to be 6.8 million older adults in 2020, projected to double by 2050 8.
This demographic transition, similar to an exponential curve growth, means that families are faced with providing care for dependent older people and caregivers who often assume this role without adequate preparation, assistance, or social support, which affects both their quality of life as caregivers, as well as that of the elderly 9.
Due to the importance of dependent older adults and their family caregivers in this study, the main objective is to analyze the socio- demographic profile and the caregiving situation of dependent older people and their family caregivers in Brazil and Colombia.
Materials and methods
This mixed comparative study of the exploratory type based on Bereday’s (1964) guidelines complies with the four stages of description, interpretation, juxtaposition, and comparison. In addition, it includes two countries, covering the similarities and differences between the sociocultural and political organizations within Brazil and Colombia, particularly dependent older adults and their family caregivers 10.
The study was conducted according to the guidelines: Consolidated Criteria for Reporting Qualitative Research (COREQ) 11 and Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) 12.
A semi-structured interview was used to guide the collection of information, which included questions regarding socio-demographic data, the older people’s ability to perform daily activities, and open-ended questions regarding their cognitive, mental/emotional, and social dependence.
The researchers did not know the participants before the study. Once contact was established between researchers and interviewees, training was provided to the researchers, and the study’s objective was shared with them.
In Brazil, seven cities that were included in the Estratégia Saúde da Família (Family Health Strategy), a primary healthcare program, were the research sites for convenience. These cities were Teresina, Brasilia, Belo Horizonte, Manaus, Fortaleza, and Rio de Janeiro, which were part of the national multicenter research by Cecilia Minayo entitled: “Situational study of dependent older adults living with their families” to propose a care policy and support to caregivers. The author approved the use of data for research purposes.
In Colombia, data collection by convenience was carried out through the Cuidando a cuidadores (Caring for caregivers) program, thanks to a nursing professional who is a member and leader of this program. In both areas, prior authorization was granted by the respective ethics committee. Families whose elderly lived in old homes or lived alone were excluded. All dependent older adults and family caregivers living in the same household who agreed to participate voluntarily in the study were included.
In both countries, data collection was conducted at the participants’ homes, where only the participant and the researcher were present. In Brazil, data collection was carried out between September and November 2019, and in Colombia, between February and April 2020, with an average interview duration of forty minutes. Repeated interviews were not conducted.
Verbatim transcriptions of the audio-recorded interviews were made to support the results and interpretations presented (content analysis). Leading questions were avoided to prevent bias, and during information interpretation and analysis, researchers maintained neutrality in indicating the commonality of responses and holistically examining representation. The qualitative analysis software ATLAS.TI and the programs Excel and SPSS version 22 were used for quantitative analysis. Due to the COVID-19 pandemic between 2020 and 2021, it was impossible to return transcripts to participants after coding and have feedback on the results.
According to Bereday’s model 13, description represents the detailed narration of a discourse; interpretation determines the meaning of a text with certainty, juxtaposition incorporates the initial confrontation of data, and, finally, comparison represents the simultaneous analysis of the variables of the different places included. ATLAS.TI, a qualitative data analysis program, was used to create a total of 66 codes that were included in categories, subsequently analyzed and compared between the two countries.
Results
A total of 250 participants were interviewed in the two countries. Of these, 52 dependent older adults and 70 family caregivers were interviewed in Brazil, and 56 dependent older people and 72 family caregivers in Colombia. Table 1 presents the participants’ sex and age. The number of participants who voluntarily decided not to be included in the study was not recorded.
Table 1 Sex and age of the older adults and family caregivers in Brazil and Colombia
| Sex | Older people in Brazil | Older people in Colombia | Total of older people | |||
|---|---|---|---|---|---|---|
| n | % | n | % | n | % | |
| Female | 35 | 67.3 | 39 | 69.6 | 74 | 68.5 |
| Male | 17 | 32.7 | 17 | 30.4 | 34 | 31.5 |
| Total | 52 | 100 | 56 | 100 | 108 | 100 |
| Sex | Caregivers in Brazil | Caregivers in Colombia | Total caregivers | |||
| n | % | n | % | n | % | |
| Female | 57 | 81.4 | 62 | 86.1 | 119 | 83.8 |
| Male | 13 | 18.6 | 10 | 13.9 | 23 | 16.2 |
| Total | 70 | 100 | 72 | 100 | 142 | 100 |
| Age | Brazil | Colombia | ||||
| Mean | SD | Mean | SD | p-value | ||
| Older people | 79.35 | 9.1 | 73.82 | 9.01 | 0.002* | |
| Family caregivers | 55.6 | 12.2 | 40.2 | 14.5 | 0.01* |
* p < 0.05, ** p < 0.01
Source: Own elaboration
It is evident that, in both countries, the female sex is prevalent among the elderly and the family caregivers, as out of the total number of participants, 250 people, 193 were women (77.2 %). The age of the elderly and family caregivers in the two countries showed a statistically significant difference, 5.53 and 15.4 years, respectively, being higher in the Brazilian participants.
A variety of ethnicities are present in both countries (Asian, Caucasian, African, Mixed, Hispanic); the most prevalent in Brazil is Caucasian among older adults (40.4 %) and Mixed among family caregivers (35.7 %). In Colombia, the most pervasive ethnicity identified by the participants, both among older people and family caregivers, was Mixed (48.2 % and 59.7 %, respectively) (p < 0.05, p < 0.01).
When family caregivers were asked about the relationship with the dependent older adult, most participants in both countries responded that they were their children (57.14 % in Brazil and 52.78 % in Colombia). However, the second most frequent response in Brazil was the spouse (24.29 %), and in Colombia, the granddaughter (18.06 %) (p < 0.01).
Regarding marital status, it was evident that most dependent older people were widowed (44.2 %), followed by married people (38.5 %), while the opposite was true in Colombia (married 30.4 % and widowed 28.6 %) (p < 0.05).
Religion-wise, Catholicism was the predominant religion in Brazil and Colombia; however, in Colombia, it was more prevalent with 91.1 % of the participants (p < 0.05). Similarly, regarding education, the percentage of people who reported having completed primary education was higher in Colombia (28.57 %) (p < 0.05).
Within the physical and structural adaptations of the household, 91.1 % of the dependent older adults in Colombia reported having some modification, compared to 59.6 % of the older people in Brazil (p < 0.01). Finally, 53.6 % of dependent older adults in Colombia stated having some leisure activity, while in Brazil, this rate was 9.6 % (p < 0.01).
Regarding the qualitative data from the interviews, a complete reading of the interviews of all participants was carried out, whose common statements were identified with a code, which was later grouped into the final categories by similar attributes. From the dependent older adults’ statements in Brazil, five categories emerged, namely: I am a burden, I want to be autonomous, I am no longer who I was before, I accomplished my mission, and I am okay with God. In Colombia, six categories emerged: I do not feel useful, I want to be autonomous, I am not who I was before, I accomplished my mission, I am okay with God, and My role in my family (shown in Table 2).
Table 2 Categories of the participants’ statements
| Brazil | Colombia | |
|---|---|---|
| Older people |
|
|
| Family caregivers |
|
Source: Own elaboration
The categories developed based on the statements of dependent older people in Brazil and Colombia are described below.
I am a burden (identified in Brazil): When faced with a situation of physical, emotional, and social dependence, in addition to aging and the onset of diseases that hinder their ability to carry out daily activities, older adults feel that they are no longer productive and begin to feel useless and as a burden.
I do not feel useful (identified in Colombia): It expresses sadness for having to receive assistance from another person (the family caregiver) in their daily activities due to their dependence situation.
I want to be autonomous: The expression of a wish to carry out daily activities that they performed before they became dependent, such as bathing, preparing food, or undergoing treatment. However, due to their condition, they cannot do them on their own.
I am no longer who I was before: Older adults often remember the activities they performed when they were independent; however, although they would like to perform them again, the people in their context (to a greater extent, their family) prevent them from completing them due to their condition and the possibility of adverse events. Older people may engage in a denial process.
I accomplished my mission: When they feel they have achieved their mission throughout life. It refers to the fact that while they were independent, they did the most out of their health and family. Currently, the older adults accept their condition, given their limitations, and do what they can with joy and accept what they cannot do with resilience.
I am okay with God: It is the transformation of their pain and dependence situation. They establish a relationship with a higher being who helps them accept themselves, leave their worries and hardships with this higher being, and receive a sense of inner peace in return.
My role in my family (identified in Colombia): It represents the perception of usefulness as family members of the older adults who, aware of their dependence and limitations, participate in the decisions regarding their care, family decisions, or home adaptations, which gives them a feeling of usefulness and family unity.
The categories developed based on the family caregivers’ statements in Brazil and Colombia were the following: How I became a caregiver, The burden of caregiving on me, Changes in our lives, I have support, I have God’s help, and My challenges as a caregiver. Table 2 presents the description of these categories, as well as the statements of some interviewees.
How I became a caregiver: This includes the meanings that cause a person to become a caregiver. It also refers to the internal and external motivations or conditions that led the person to make this decision, including reasons of time and past experiences with the dependent older person.
The burden of caregiving on me: This represents the responsibility of being with the dependent older person in their daily activities. Often, these tasks become so excessive that they impact the caregiver’s life. They can also be influenced by internal or external personal factors or stressful situations, to the point of having difficulties in carrying out one’s activities, which result in having to carry them out with concerns.
Changes in our lives: Some significant changes occur in the lives of family caregivers as they become the ones who provide care the most to the dependent elderly; also, changes in the lives of the elderly occur and are perceived by family caregivers as their health situation is critical to the caregivers.
I have support: Secondary to the caregiving situation, help or support appears, which may be material or intangible, is perceived by the family caregivers in their daily activities related to the care provided to the elderly and helps them to avoid or reduce the care burden.
I have God’s help: Some caregivers perceive their situation as being helped by a higher being (God), who helps them to be resilient and leave their concerns and problems with that being; in return, they receive a sense of inner peace. Likewise, the feelings of spiritual support in the lives of older adults perceived and described by caregivers are also noted.
My challenges as a caregiver: This represents all the challenges perceived, consciously or unconsciously, by family caregivers as a consequence of the caregiving situation, and new methods are identified to assist in maintaining this relationship as a healthy one.
Discussion
A prevalence of the female sex is found among dependent older adults and family caregivers both in Brazil and Colombia, which can be attributed to the life expectancy at birth at the national level, which is higher in women in both countries 13. This result is similar to other studies, where older people and family caregivers are primarily female 14-17.
Regarding the age of the dependent older adults, the studies vary between an average of 69.3 years and 75.5 years, ranging from 60 to 96 years 14,16-17. Regarding family caregivers’ age, an average of 43.1 years was identified among family caregivers in Colombia 18. However, studies conducted in different regions of Brazil found that the average age of family caregivers is over 50 years 19-22, similar to what was found in the present study.
The ethnicity most reported by older adults in Brazil was Caucasian, which differs from what was found in the study, as 76.9 % of older people reported themselves as Mixed. Although Mixed was the most reported ethnicity in Colombia, it represented only 48.2 % 22.
At the national level, the Instituto Brasileiro de Geografia e Estatística - IBGE (Statistics and Geography Brazilian Institute) stated that 46.7 % of the Brazilian population declared themselves Mixed, being the most prevalent ethnicity in Brazil, followed by the Caucasian ethnicity, which is contrary to what was found in the present study 23. In Colombia, according to the Departamento Administrativo Nacional de Estadísticas - DANE (National Administrative Department of Statistics), the most prevalent ethnicity in the population is Mixed, which is similar to what was found in the present study 8.
Regarding the family caregivers, the prevalent ethnicity in both countries was Mixed, consistent with national studies conducted by IBGE 23 and DANE 8. Likewise, a study carried out in the state of Ceará, Brazil, showed that 76.9 % of family caregivers identified themselves as Mixed 22.
Concerning the relationship of the family caregivers with the dependent older people, a study conducted in Canada found that children represent 56.2 % of the caregivers, followed by spouses (35.4 %) 24, which is consistent with what was found in Brazil. However, it differs from the results obtained in Colombia, which may be attributed to the life expectancy in Canada, which is higher than that of Brazil and Colombia; living longer, couples age together and take care of their spouses 13.
For marital status, in Brazil, the older adults reported that 44.2 % of them were widowed, and 38.5 % were married, which is consistent with the study results, where 38.5 % of the older people were married. The same percentage were widowed 22. Nonetheless, it differs from the results among older adults in Colombia, who reported a higher rate of being married (30.4 %) and then widowed (28.6 %), which may be related to the average age of the participants (older in Brazil).
It is noted that the prevalent religion in both countries is Catholic, which is consistent with what was found by 22, who indicates that 76.9 % of the dependent older people in his study considered themselves Catholics, which may be attributed to the fact that both in Brazil 23 and Colombia 8, the prevalent religion is Catholic.
Among the physical and structural household adaptations, the present study showed a higher percentage of affirmative responses from older adults in Colombia than those in Brazil (91.1 % versus 59.6 %). However, the high prevalence of these adaptations may be associated with an increase in the perception of the functional capabilities of the dependent older people themselves, impacting confidence and quality of life in other areas 25.
Regarding leisure activities and free time, in Brazil, 9.6 % of the older people stated that they engage in them, compared to 53.6 % in Colombia, which may be explained by the participants’ average age, which is lower in Colombia.
In the categories I am a burden, I want to be autonomous, and I am no longer who I was before, it was found that most of the older adults were female, with women tending to be more dependent regarding daily activities when compared to men 26.
In the category I accomplished my mission, a code is referred to as Partner (bond), representing the affective bonding that exists mainly when the caregiver is also the spouse. In both countries, almost a quarter of the dependent older people reported being cared for by their spouses, which may be attributed to the emergence of statements corresponding to establishing a bond. It may represent a protective factor associated with the burden experienced by the older people when the social interaction is positive, as evidenced in the statements of the dependent older adults interviewed 17.
In addition, the category I am okay with God is identified as one with a high prevalence due to the high number of people who practice a religion. There are discourses in which dependent older adults express themselves calmly in stressful situations, including death. In this way, they identify spirituality as a support for the dependent older adult 27.
The last category described for older people, particularly identified in the Colombian participants’ interviews, corresponds to the category entitled My role in my family. The study in Canada addressed the participation of dependent older people and found that 93 % of them reported assuming an active or collaborative role in the decision-making process 24. These results are consistent with the present study, which may be attributed to the type and complexity of the older adults’ dependence and their ability to communicate with their families.
Regarding family caregivers, the first category, entitled How I became a caregiver, is filled with motivations that encompass personal and external situations. In a study conducted in Iran, an attempt was made to determine why caregivers assume this role, identifying four psychosocial motivation categories 28.
The first was related to moral reasons, similar to the statements from Brazil and Colombia participants. The second concerned religious or spiritual reasons. The third was related to financial reasons. In the present study, caregivers were identified as lacking the financial means to hire a formal caregiver. Finally, immoral reasons are related to taking revenge on or stealing from the dependent older person, which is not associated with what was found in the present study in Brazil and Colombia.
In the second category, The burden of caregiving on me, similarities are evident with the findings of a study that identifies that caring for the elderly can create a burden, especially when the caregiver experiences stress and lacks adequate social support to help them, according to the level of dependence of the elderly 17.
In the category entitled Changes in our lives, in the interviews, the transformation of the household for the elderly is evident, representing changes in the physical environment. It is related to the findings of a study that concluded that the adaptations in the household might be associated with an increase in the perception of functional capacity by the elderly themselves when performing an activity independently that they were only able to perform with the caregiver’s assistance 25.
The I have support category represents the support the family caregiver receives and is perceived by the caregiver. Thus, an interaction between both parties must exist for decisions regarding tasks and care, influencing the situation of the elderly 24.
The fifth category, I have God’s help, presents statements that may be attributed to the religious and spiritual prevalence of both countries (Brazil and Colombia), which is partially consistent with a study where religiosity represents support for receiving emotional strength and continuing to care for the dependent elderly 28.
In the last category, My challenges as a caregiver, the family caregivers consider their limitations and those of the dependent elderly to provide the best care. What stands out is the importance of community health professionals in outlining a care plan for the binomial dependent elderly and family caregiver (including family), the elderly who leads the household as far as possible, and the situation of being dependent 17,29.
Conclusion
The present study analyzed the socio-demographic profile and the caregiving situation of dependent older adults and their family caregivers in Brazil and Colombia through a methodologically innovative mixed-approach study. It found a complex socio-demographic profile of the participants, with a prevalence of wives and daughters of the elderly as the majority of family caregivers and a preponderance of the Catholic religion.
The caregiving situation is evident within the categories generated from the participants’ statements, as dependent older people feel as if they are a burden, they do not feel helpful or the same as they were before; also, they expressed the desire to be autonomous and to have accomplished their mission in life, as they feel at peace with a superior being. In addition, it was evident in the Colombian statements that the elderly people referred to their role in their families.
Regarding family caregivers, the caregiving situation is centered on why they became caregivers, how caregiving impacts their lives, how different changes develop, the different types of human and material support that occur during caregiving, the help they perceive from a superior being in providing their services to the older adults, and, finally, the challenges that the caregivers perceive in caregiving activities.
However, due to the magnitude of the number of interviews, it was impossible to address all aspects completely. Considering that four research subjects are presented with similar elements, they are entirely different in other parts. Likewise, after data collection, it was challenging to provide feedback on the transcription and the results to the participants due to the COVID-19 pandemic and the quarantine measures adopted at the national level.
