Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
2.2. Participants
2.3. Procedure
2.4. Data Analysis
3. Results
3.1. Theme 1: Changes Produced After the Diagnosis
“I was with my mother at her house for a while with my daughter, until we went to live in an apartment, but my mother said that my daughter couldn’t live there. So, we stayed in the village until we could sell the apartment and buy a house in the village so that my daughter would inherit this place in the future, which would be better…”.(I01 Mother)
“We’ve always wanted to look for solutions, in fact, we moved to a village, because we saw that she was not comfortable with the previous house. [I’m] always thinking about her well-being. We also moved to a new house because we found this center nearby, and when you see that she’s well taken care of, then you relax, of course […]. Also, my mother was a very big pillar [of support], because I was working at that time and my mother was the one who helped me with her...”.(I02 Mother)
“Everything we have done has been for the good of the child. We have had to buy and change vehicles for the child, for his comfort. He did not want to be in the old apartment, he had many sudden crises, that’s why we bought the land, we did the construction, we changed the house, and we built a room on the ground floor, even a swimming pool, because, as he really likes the water, that was good for him...”.(I03 Father)
“My wife did have to quit her job, and she had a fairly good job… We had to weigh up between taking care of our son or earning money. And she made even more money than me, but we had to decide, so she had to leave her job and take care of our son”.(I11 Father)
“When I was working, the teachers weren’t able to control my daughter, so I had to come out of work [to pick her up]. Walking, it took me more than half an hour, and then I had to make up the lost hours at work afterwards. Although at work they did give me permission, and everything was fine…”.(I05 Mother)
“When she was discharged, the director told us: Get it into your head your daughter will have to be in a wheelchair [for the rest of her life]. We said that we would do everything possible to prevent this from happening, and so, her mother took her to rehabilitation for 7 years, and during those years, we paid 45,000 pesetas (€270.45) every month. Of course, on some occasions we had help from the grandparents…”.(I13 Father)
“I have the future sorted out with the residence. Yes, I am concerned about money, so what I do is [put some money aside] for him, so that he has money in the future when we are not there and he can pay them, but of course, it is complicated because we don’t earn that much, and so that worry is there...”.(I04 Mother)
“Her brother had to grow up, and he was only 4 years old. He has always had to live with that nightmare, and that my 24 h of attention were directed to my girl. They have a good relationship as siblings, but I think he did feel jealous, and still does nowadays. […] He lived through it in sorrow...”.(I14 Mother)
“Her brother, delighted as always, sits down and listens to her. When he has a moment, he comes and sits with her and he loves it, and he laughs with her. He likes it when she tells him what she is and isn’t doing. He spends his time with her, and he loves it, and she already feels so integrated and so good too. Since he was little, he’s spent a lot of time with her, he even preferred doing that to going out with his friends. Today I can rest and assure that if something happens to me, I know her brother will be there with her”.(I06 Mother)
3.2. Theme 2: Interpersonal Relationships
“It’s that, they all say they love him a lot, but I feel that they’re not being honest. And I have my daughter, and she says that we should solve our own problems, but I already have enough with mine […]. In the village, I used to say, let his cousins come over and play with him and he can learn things, but his cousins have their own lives and they don’t think about coming to see their cousin or to help their aunt…”.(I10 Mother)
“Her brother has lived his life, but he has not been caring. That still bugs me, because he says he’s going to take care of her, but I won’t be here to see it, and that scares me. I’ll believe it when I see it, right? That’s my way of thinking...”.(I07 Mother)
“We don’t have anyone; I don’t know if this happens a lot in these situations. With any help or simply being able to speak to someone we would be very grateful, but when people see our situation, they move away, they continue their lives, they don’t have the same life as you and they don’t empathize with you, it is easier to run away…”.(I15 Father)
“What friends? You have no friends; nobody wants to listen... If you aren’t well, nobody wants to be by your side... Before, when I had to ask for help, it was when the children were boys and I was alone because my husband was working, and I had a friend who, from that moment, became very distant, we barely speak to each other now...”.(I16 Mother)
“We don’t go out, we don’t have a life, because we have to be with him, and we are locked up 24 h a day, the time he’s here in the center, is the only free time we have. Of course, we can’t have a married life, we’ve been like this for 37 years. And we have more and more arguments…”.(I03 Father)
“The usual thing when there is a problem of this type is separation, but it united us more, it united us a lot, because we believed that the person who was really in need was him, not us, and so we dedicated ourselves to him, and that dedication made us unite more…”.(I11-Father)
3.3. Theme 3: Physical and Emotional Well-Being as a Caregiver
3.4. Theme 4: Concerns about the Future
4. Discussion
5. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
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Participant | Sex | Age | Kinship | Educational Level | Occupation | Marital Status | Offspring Sex-Age | Timing of Diagnosis | Degree of ID | Number of Additional Children | Residence |
---|---|---|---|---|---|---|---|---|---|---|---|
I 01 | Female | 71 | Mother | Primary | Homemaker | Married | F-39 | Post-Birth (2 years) | 86% | 1 | Family |
I 02 | Female | 59 | Mother | Primary | Homemaker | Married | F-27 | Post-Birth (2 years) | 84% | 0 | Residence |
I 03 | Male | 69 | Father | Primary | Retired | Married | M-37 | Birth | 99% | 0 | Family |
I 04 | Female | 83 | Mother | Primary | Homemaker | Married | M-40 | Birth | 79% | 0 | Residence |
I 05 | Female | 71 | Mother | Primary | Homemaker | Widow | F-31 | Post-Birth (3 years) | 65% | 0 | Family |
I 06 | Female | 63 | Mother | Primary | Homemaker | Married | F-36 | Post-Birth (10 years) | 70% | 1 | Family |
I 07 | Female | 66 | Mother | Primary | Retired | Married | F-32 | Post-Birth (10 years) | 75% | 0 | Family |
I 08 | Female | 54 | Mother | University | Homemaker | Married | M-18 | Post-Birth (4 years) | 48% | 0 | Family |
I 09 | Male | 53 | Father | Secondary | Unemployed | Married | M-18 | Post-Birth (5 years) | 48% | 0 | Family |
I 10 | Female | 56 | Mother | Primary | Employed | Married | M-31 | Birth | 75% | 1 | Family |
I 11 | Male | 67 | Father | Secondary | Retired | Married | M-39 | Birth | 98% | 0 | Residence |
I 12 | Female | 62 | Mother | University | Homemaker | Married | M-39 | Birth | 98% | 0 | Residence |
I 13 | Male | 72 | Father | Secondary | Retired | Married | F-39 | Post-Birth (3 years) | 86% | 1 | Family |
I 14 | Female | 65 | Mother | Secondary | Freelance | Married | F-36 | Post-Birth (2 years) | 33% | 0 | Family |
I 15 | Male | 64 | Father | University | Retired | Married | M-27 | Post-Birth (13 years) | 75% | 1 | Family |
I 16 | Female | 56 | Mother | University | Unemployed | Married | M-28 | Post-Birth (11 years) | 36% | 1 | Family |
When did you or another family member begin to notice that something was happening to your child? What did you perceive as different in your child’s development? Why? |
How did you feel at the time of the diagnosis? What thoughts did you have as you tried to understand that diagnosis? What did you do about it? |
Where did you encounter the most difficulty in raising your child? Why? |
Do you feel that your general health and well-being has worsened in recent years compared to the time of diagnosis? Why? |
Which changes occurred in your family dynamics in the moment of diagnosis on a social, economic/work, and leisure level and as a couple or with the child’s other siblings or relatives? Have these changes been maintained in the adult stage of your children? |
What is your child’s relationship with his/her other siblings like? |
How much time do you spend on yourself every week? What do you do in that free time? |
Do you have family or close people (neighbors and friends) who currently help you? Did you have this support at the time of the diagnosis? |
What do you think about the care your child receives from the health system? |
What support have the different care associations provided you? |
What are your main concerns about your child? |
What did you previously think about your child’s future and how do you imagine it now? |
What aspects of your life and that of your child do you think could be improved? |
Changes Produced after the Diagnosis | Interpersonal Relationships | Physical and Emotional Well-Being as a Caregiver | Concerns about the Future |
---|---|---|---|
Changing residence/home | Little family support | Poorer physical health | Child’s place of residence |
Adequacy of the home for the child with ID | Social distancing | Anxiety/worry | Economic expenses and employment |
Abandonment of the carer’s job | Problems with partner | Lack of self-care and enjoyment | Physical health status of the child |
Economic difficulties | Feeling of sorrow/grief | Having family and social support | |
Relationship with the siblings of the child with ID | Positive aspects | Happiness of the child |
Codes | Quotes |
---|---|
Worse physical health | “In the middle of the night I have to get up 3 or 4 times to change him. Nights where I don’t sleep, nights where I sleep for the first 3 or 4 h and that’s it, or he/she starts to make noise, I can’t get back to sleep” (I03 Father). |
Anxiety | “It’s a huge suffering when he gets sick, I tremble when he gets sick. I don’t want anything to hurt him, so he doesn’t get worse, he doesn’t suffer, and that worries me a lot…” (I12 Mother). “For some time now I’ve had anxiety attacks, in fact, they were affecting my heart, I have heart problems, I take drugs for that. The anxiety is because of the fear that something will happen to him, that his health will deteriorate, that he will not have any friends…” (I16 Mother). |
Lack of self-care and enjoyment | “Before we had friends, but not anymore. It’s not the same to have one child to having three, and to have a child with difficulties… because that means that you can’t do the same as you did before. Also, if nobody helps you... I couldn’t go out much before, nor now...” (I06 Mother). “When you go with these children to places where families with children who are okay go, they don’t accept them. So, because they are not accepted, you pull back and make your own life, you end up alone without having any time for yourself or the marriage...” (I04 Mother). |
Feeling of sorrow/grief | “Well, the truth is that the mood is sadder because of the care, yes... We’re not going to say no... [But,] physically, no, because the truth is that she’s truly autonomous... on a physical level it hasn’t affected me...” (I02 Mother). “They’re never entirely accepted. There you have your thorn... The thorn that could’ve been more independent, more autonomous. Within a normality, I would like it to be like that, but it’s not. What can I do? It’s not like that. I feel sorrow and sadness because I’m not like I used to be, as I remember being, or how I remember my brother or my friend were” (I09 Father). |
Positive aspects | “My sisters say that I’m getting better with her every day, they say ‘she’s helped you to live’, and I believe it might be true because I don’t stop, I’m more active” (I05 Mother). “My son, within the limits of his disability, has changed everything for the better, the experience has been hard, but his love is very enriching without a doubt” (I11 Father), |
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Fernández-Ávalos, M.I.; Pérez-Marfil, M.N.; Ferrer-Cascales, R.; Cruz-Quintana, F.; Clement-Carbonell, V.; Fernández-Alcántara, M. Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study. Int. J. Environ. Res. Public Health 2020, 17, 8690. https://doi.org/10.3390/ijerph17228690
Fernández-Ávalos MI, Pérez-Marfil MN, Ferrer-Cascales R, Cruz-Quintana F, Clement-Carbonell V, Fernández-Alcántara M. Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study. International Journal of Environmental Research and Public Health. 2020; 17(22):8690. https://doi.org/10.3390/ijerph17228690
Chicago/Turabian StyleFernández-Ávalos, María Inmaculada, María Nieves Pérez-Marfil, Rosario Ferrer-Cascales, Francisco Cruz-Quintana, Violeta Clement-Carbonell, and Manuel Fernández-Alcántara. 2020. "Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study" International Journal of Environmental Research and Public Health 17, no. 22: 8690. https://doi.org/10.3390/ijerph17228690
APA StyleFernández-Ávalos, M. I., Pérez-Marfil, M. N., Ferrer-Cascales, R., Cruz-Quintana, F., Clement-Carbonell, V., & Fernández-Alcántara, M. (2020). Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study. International Journal of Environmental Research and Public Health, 17(22), 8690. https://doi.org/10.3390/ijerph17228690