Time for Care: Male and Female Voices Based on Their Caregiving Experiences
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
2.2. Study Setting and Recruitment
2.3. Inclusion and Exclusion Criteria
2.4. Data Collection
2.5. Data Analysis
2.6. Ethical Considerations
2.7. Rigor and Reflexivity
3. Results
3.1. Uncertainty of Care
“The hardest thing about taking care of a person is living with the anxiety that one day they may leave… We may go to bed one night and find they do not wake up the next day.”(Olga)
“Ever since the beginning, I have felt uncertainty, loneliness, and permanent emotional exhaustion.”(Camila)
“For me, at the beginning, I felt fear, restlessness and anxiety, not knowing what was going to happen.”(Rocío)
“I was not used to dealing with a sick person like that… I cry; I sometimes sit down to cry about what has happened to me, that is, to have been left alone like this, to be with him like this.”(Melba)
“At first you are trying to adjust to the situation, it is like a process. As you are not fully prepared to understand it, the adjustment is always a difficult step.”(José)
“They (healthcare staff) only say ‘Give the drug to your mom like this or that’… and that’s it. No one explains anything further to us.”(Pablo)
“Hemodialysis is too hard, sometimes you see difficulties in some things and if you go back… you don’t know what to do.”(Raúl)
“I am worried about what will happen to my wife when I am no longer with her.”(Jairo)
3.2. Transformation of the Caregiver’s World
“I do not rest from taking care of her, I have no rest… I have to keep an eye on her, do my job and keep an eye on the child, one forgets to take care of oneself.”(Olga)
“One has to do more work; more dedication and effort is required on an emotional, economic, physical level, everything, everything… Sometimes you get up, and you do not want to start, you do not want to go on, but just seeing him… realizing how much he needs our care, that he needs us one hundred percent, you go back and start again.”(Rocío)
“Everything has been a process that has been carried out gradually. You must have a lot of patience; if you do not have patience, it is difficult, and sometimes there are inconveniences.”(Beatrice)
“Well, it changes everything because you do not think about anything else, you do not focus… you only think about the well-being of that person.”(Mery)
“I think the most important thing is patience. That is what I was telling them: I had to change to become patient. I know that the patients have an attitude, you have to get used to it and adapt to that change, right? You must be patient to understand their situation.”(Joseph)
“Well, it was difficult for me, but then you need to stand up and take on the burden.”(Jaime)
“Patient with a sick person, that is what you should be, I think. Give them their medicines on time and pay attention to everything that happens.”(Mario)
“For example, when I need to leave, the nurse stays. However, I cannot walk calmly, I get stressed. I am always stressed; sometimes I forget… but no, soon I stop doing other jobs… I have to go back to the stress of the illness.”(Pedro)
“Well, I would go and pick her up, bring her back and she would go to bed, because she didn’t come in the mood for anything… to handle the stress that they handle, plus the bad temper that was added… I would make lunch, help to pick up the mess or something.”(Raúl)
“I have to take care of everything she needs because I am responsible for her and that’s the way it should be, sometimes I get stressed because there are many things, and all of them are important, so I tell myself I need to be patient.”(Jairo)
3.3. Tireless Guardianship and Unwavering Devotion
“I take constant care of her… I do not allow a third party to come and take care of my daughter, because she is fragile… first my daughter, then the rest, and even I can wait.”(Olga)
“I get up, give him breakfast, his medications, I have to be very attentive; I have to give my son food. So now I am living in terrible chaos, I have no one to help me. I have dedicated myself only to taking care of J.”(Ana)
“She is my mom, and I have always been looking out for her, and at this moment, she needs me the most; how am I going to abandon her? Especially as she never abandoned us.”(Pablo)
“Perhaps when I was little, when I was born, she went through similar situations with me… at the time, she did everything, now it is my turn to do it for her.”(José)
“I became aware that I have to stay with him until God gives me life and health, and to have the hope that he will be transplanted.”(Nicolás)
3.4. Isolation and Emotional Exhaustion
“She is the priority, well, the truth is that I do not have a lot of time for myself; my priority is my daughter, as long as she is well, I am well…”(Berta)
“The only thing I go out for is medical appointments. I cannot say, ‘Oh, I am going to a shopping mall this afternoon, to hang out, to window shop’… I cannot… you cannot go out.”(Rocío)
“The caregiver works in solitude, a solitude that we are dragged into by the journey that people with Alzheimer’s make; we carry anguish, sadness, depression, a heavy suitcase that no one helps us carry.”(Beatrice)
“You focus on the sick person… stress, and that makes you tired even if you are sitting there looking at him lying there.”(Mario)
“If I go out, she stays alone; because at these moments, I am thinking about it; because I leave her in a chair and she stays there, and because she does not sit up, you cannot go out.”(Felipe)
“I am tired and sick but I have to keep an eye on her, she was an excellent wife, now it is up to me to take care of her.”(Jairo)
3.5. Imbalance Between Caring for Others and Self-Care
“First comes my daughter. Sometimes, I ask myself the same thing: one forgets about being a woman and a person, when one is mother to a child with a disability or a person with a disability; sometimes I need to go out but do not, because she comes first.”(Olga)
“I take a back seat, my tiredness and pain are not important, it is not that it does not hurt. However, I care more about taking care of my mother; she always needs me, and I can wait, I can handle this.”(Luisa)
“You have to stop doing personal things for the good of the person, because what matters is the person. However, the situation in which we both live is complicated.”(Philip)
“I come home tired from work, wanting to sleep, but then I find her unwell; I have to… try to distract her, but I also want to go to sleep; so it’s these things that make me feel guilty. I see it, but I can’t do anything about this situation.”(Jaime)
4. Discussion
5. Conclusions
5.1. Strengths and Limitations
5.2. Recommendations for Further Research
5.3. Implications for Policy and Practice
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Caregiver | Sex | Age (Years) | Relationship | Diagnosis of the Person Cared for | Age of the Person Being Cared for (Years) |
---|---|---|---|---|---|
José | Male | 53 | Mother | Alzheimer’s disease | 70 |
Mario | Male | 78 | Wife | Hypertension and diabetes | 72 |
Berta | Female | 45 | Daughter | Psychomotor retardation | 19 |
Felipe | Male | 55 | Wife | Paraplegia and muscular dystrophy | 47 |
Olga | Female | 32 | Daughter | Ataxia | 10 |
Rocío | Female | 49 | Husband | Stroke COVID-19 sequelae | 60 |
Pedro | Male | 47 | Mother | Chronic renal failure | 72 |
Jaime | Male | 34 | Wife | Bipolar disorder | 44 |
Luisa | Female | 56 | Mother | Alzheimer’s disease | 80 |
Camilla | Female | 56 | Father Mother | COPD Alzheimer’s disease | 87 82 |
Lupe | Female | 60 | Daughter | Cognitive disability | 22 |
Mery | Female | 25 | Mother | Bipolar disorder | 50 |
Ana | Female | 50 | Son | Schizophrenia | 29 |
Melba | Female | 58 | Husband | Head trauma, multiple neurological injuries | 62 |
Nicolás | Male | 50 | Father | Chronic renal failure | 18 |
Gladys | Female | 24 | Son | Hydrocephalus, musculoskeletal malformations | 8 |
Beatrice | Female | 38 | Son | Duchenne muscular dystrophy | 15 |
María | Female | 61 | Son | Cerebral palsy, spastic quadriplegia | 31 |
Raul | Male | 50 | Wife | Chronic renal failure | 32 |
Jairo | Male | 86 | Wife | Alzheimer’s disease | 83 |
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Ramírez-Perdomo, C.A.; Cantillo-Medina, C.P.; Perdomo-Romero, A.Y. Time for Care: Male and Female Voices Based on Their Caregiving Experiences. Healthcare 2024, 12, 2245. https://doi.org/10.3390/healthcare12222245
Ramírez-Perdomo CA, Cantillo-Medina CP, Perdomo-Romero AY. Time for Care: Male and Female Voices Based on Their Caregiving Experiences. Healthcare. 2024; 12(22):2245. https://doi.org/10.3390/healthcare12222245
Chicago/Turabian StyleRamírez-Perdomo, Claudia Andrea, Claudia Patricia Cantillo-Medina, and Alix Yaneth Perdomo-Romero. 2024. "Time for Care: Male and Female Voices Based on Their Caregiving Experiences" Healthcare 12, no. 22: 2245. https://doi.org/10.3390/healthcare12222245
APA StyleRamírez-Perdomo, C. A., Cantillo-Medina, C. P., & Perdomo-Romero, A. Y. (2024). Time for Care: Male and Female Voices Based on Their Caregiving Experiences. Healthcare, 12(22), 2245. https://doi.org/10.3390/healthcare12222245