Mothers Who Take Care of Children with Disabilities in Rural Areas of a Spanish Region
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Participants
2.3. Data Collection
2.4. Data Analysis
2.5. Ethical Considerations
3. Results
3.1. Extensive Care Responsibilities
“…you have to feed him, dress him, take him to the toilet, you have to watch over him because, just like that, if he sees a staircase, he throws himself down. Or, if he sees a car in front, he stands there. So, you have to stay with him 24 h a day”(M3).
“This child, for example, on weekdays he does not have… He can’t go to the park, he can’t play with other children, he can’t, because he doesn’t have time in the afternoon”(M3).
“She was going to the swimming pool and also to the speech therapy, and when I fell ill, well she had to quit several things because, well, she couldn’t… She couldn’t, could she?”(M2).
“I also had my sisters here, and they always, well, they have also given me a hand, right?: ‘Take the girl, pick her up for me’”(M2).
“I have my mother, poor thing,… thank goodness she’s here, otherwise… Also on holidays, he goes with my mother. Because he can’t stay alone. Or with his sister”(M3).
“I decided, well,… I was working when she was born. We had to give up something. Because this is too much, it’s a big burden. So, I don’t work and I’m completely dedicated to them”(M4).
“Here in town we’ve always had less things. We have always had to go to the city to shop, to go to the doctor, for everything… […] Women who do not have a university degree have only been able to work in agriculture or caring for the elderly. Always jobs that involve a lot of effort and little pay. That’s what there is…”(M9).
3.2. Impact on Well-Being and Daily Life
“my arms are all messed up from pushing the chair up the slopes… and now she’s just a child… tomorrow”(M7).
“It’s very hard mentally, not physically because physically people bear it up. And if you have strength, we bear up more, but mentally it’s very hard (…). It’s very hard because you see how other people can live their lives, you have limitations, no matter how much you want, you have limitations. People look ahead. You have to look at today”(M11).
“I can’t go anywhere, I can’t go out on a Saturday, or a Sunday, or nothing at all, I don’t have a life”(M3).
“You don’t take care of yourself, you can’t. Where do I get the time? I wish I could lose some weight. What nonsense, but I’m working from eight to three, I come, have lunch, I go and take a shower, I come here, I get home at half past seven. Do I take the girl and go for a walk? Do I have a Zumba lesson? No, I don’t, because on top of that I have to cook dinner, I have to do the laundry, I have to prepare the clothes for next day”(M7).
“Well, we’re young, we like to party, we also like going… going out at the weekend, go here, go there, and with him we can’t”(M1).
“Me, nothing. I mean, the typical things: the girls, the house… of course you have to take care of yourself, but… When I can, because when I was having chemo I brought her with me, you know? I brought her and maybe I went to Carrefour, but… I had to sit down in any seat in Carrefour, I mean I was wiped out”(M2).
“This very often takes much effort, but you do whatever it takes for a child, don’t you? That’s what I think. And what shall I do, for myself? I don’t know… Yes, what I want is to be there for her. If I’m with her, well I’m at ease and I’m happy.”(M2).
3.3. Resources that “Barely” Help
“it’s very good, but… it’s much too far, it’s not enough. With the issue of disability, they limit you very much: either you have money, a real fortune, or they limit you to home, school, or work those who have a job, therapy, and back home”(M7).
“For nothing. Not even food. Because on top of that he has a special diet, he does not chew, everything has to be ground, he’s very allergic, everyday it’s special food for him, yogurts, his special juices. So as I say, it isn’t enough even for food, for nothing”, or as M7 complains: “For me, to pay the rent, not always to come here [Rehabilitation Center], because sometimes in winter, the butane bottles, the electricity, … (…) Who pays my rent that month? Fine, yes, I have a person who helps me to lift her. But from where if I don’t have a home?”(M10).
“And when the crisis began, they cut down dependency benefits. As if they were going to eat less. Or do less”(M6).
“I can’t go anywhere in the afternoons because I have to come here with him. He can’t quit his therapy because that’s what keeps him the way he is […] I do as much as I can and then it’s up to my mother. Well… there’s no other way. I can’t do more […] I can’t afford to fall ill, I can’t afford not to be able to go to work”(M3).
“What I have is the money, because what do I want someone for to take care of him, if I am free, I’m unemployed?”(M1).
4. Discussion
5. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
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Participant | Age | Marital Status | Children | Age (and Sex) of the Child with Disability | Level of Disability |
---|---|---|---|---|---|
M1 | 47 | Married | 2 children | 17 (boy) | Serious |
M2 | 45 | Married | 2 children | 17 (girl) | Serious |
M3 | 44 | Separated | 3 children | 8 (boy) | Moderated |
M4 | 38 | Married | 2 children | 12 (girl) | Very Serious |
M5 | 44 | Married | 1 child | 10 (boy) | Serious |
M6 | 35 | Married | 2 children | 11 (boy) | Very Serious |
M7 | 37 | Single | 1 child | 9 (girl) | Very Serious |
M8 | 38 | Married | 1 child | 6 (girl) | Serious |
M9 | 37 | Married | 2 children | 2 (boy) | Very Serious |
M10 | 43 | Married | 2 children | 2 (boy) | Very Serious |
M11 | 40 | Married (second marriage) | 2 children | 14 (girl) | Moderated |
M12 | 30 | Married | 1 child | 3 (girl) | Serious |
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Cantero-Garlito, P.A.; Moruno-Miralles, P.; Flores-Martos, J.A. Mothers Who Take Care of Children with Disabilities in Rural Areas of a Spanish Region. Int. J. Environ. Res. Public Health 2020, 17, 2920. https://doi.org/10.3390/ijerph17082920
Cantero-Garlito PA, Moruno-Miralles P, Flores-Martos JA. Mothers Who Take Care of Children with Disabilities in Rural Areas of a Spanish Region. International Journal of Environmental Research and Public Health. 2020; 17(8):2920. https://doi.org/10.3390/ijerph17082920
Chicago/Turabian StyleCantero-Garlito, Pablo A., Pedro Moruno-Miralles, and Juan Antonio Flores-Martos. 2020. "Mothers Who Take Care of Children with Disabilities in Rural Areas of a Spanish Region" International Journal of Environmental Research and Public Health 17, no. 8: 2920. https://doi.org/10.3390/ijerph17082920