Family Quality of Life and Support: Perceptions of Family Members of Children with Disabilities in Ethiopia
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. “All I Have Is God”—The Foundational Role of Spirituality
3.2. Relationships
3.2.1. “When They Are Happy, I Am Happy”—Relationships within the Immediate Family
3.2.2. “There Are some Who Understand and Others Will Take Offense”—Relationships with the Community
3.3. “It’s Good to Stand by Yourself”—Wanting to Be Self-Sufficient
3.4. “Being a Parent Is a Big Responsibility and a Difficult One”—Challenges Raising Children with Disabilities
3.5. “When I Get the Support, My Family Will Live a Better Life”—The Role of Support for FQOL
4. Discussion
4.1. How Do Families Conceptualise FQOL?
4.2. Moderating Factors on Families’ Aspirations for Self-Sufficiency and FQOL
4.2.1. The Confining Demands of Basic Survival
4.2.2. Employment
4.2.3. Education
4.3. How Does Support Contribute to FQOL?
4.3.1. Peer-Support Groups
4.3.2. Community-Based Rehabilitation
4.4. Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Demographic Characteristics | n = 20 (%) |
---|---|
Age of Participant (years) | |
21–30 | 3 (15) |
31–40 | 10 (50) |
41–50 | 3 (15) |
51–60 | 1 (5) |
61–70 | 2 (10) |
71+ | 1 (5) |
Sex of participant | |
Female | 17 (85) |
Male | 3 (15) |
Level of education | |
No formal education | 5 (25) |
4th grade | 3 (15) |
5th grade | 1 (5) |
6th grade | 3 (15) |
7th grade | 0 (0) |
8th grade | 1 (5) |
9th grade | 1 (5) |
10th grade | 4 (20) |
11th grade | 1 (5) |
University | 1 (5) |
Approximate Monthly Family Income (Birr) | |
<1000 | 1 (5) |
1000–1500 | 3 (15) |
>1500 | 3 (15) |
Irregular income | 9 (45) |
Not stated | 4 (20) |
Sex of child with disability | |
Female | 9 (45) |
Male | 11 (55) |
Relationship to child with disability | |
Mother | 11(55) |
Father | 3 (15) |
Grandmother | 3 (15) |
Aunt | 2 (10) |
Sister | 1 (5) |
Religion | |
Orthodox Christian | 18 (90) |
Muslim | 2 (10) |
Participant Number | Description |
---|---|
P1 | sister of 10-year-old boy with physical disabilities |
P2 | grandmother of 10-year-old boy with developmental disability |
P3 | aunt of 4-year-old girl with multiple disabilities |
P4 | mother of 5-year-old boy with multiple disabilities |
P5 | aunt of 11-year-old girl with physical disabilities |
P6 | grandmother of 15-year-old girl with physical disabilities |
P7 | mother of 14-year-old boy with multiple disabilities |
P8 | mother of 2-year-old boy with multiple disabilities |
P9 | father of 4-year-old girl with multiple disabilities |
P10 | father of 7-year-old boy with multiple disabilities |
P11 | father of 10-year-old deaf girl |
P12 | mother of 4-year-old boy with multiple disabilities |
P13 | mother of 12-year-old boy with intellectual disability |
P14 | mother of 9-year-old boy with intellectual disability |
P15 | mother of 10-year-old boy with physical disabilities |
P16 | mother of a 7-year-old girl with physical disabilities |
P17 | grandmother of 7-year-old boy with multiple disabilities |
P18 | mother of 9-year-old girl with physical disabilities |
P19 | mother of 7-year-old deaf girl |
P20 | mother of 15-year-old girl with multiple disabilities |
Theme | Representative Quotes |
---|---|
Spirituality | “When you are spiritual, everything will be blessed. All of us including my children always pray and fast. Thanks to God we are living off his blessings.” P16 “If you have a belief, you will fear God. You will get comfort in Him. A person with faith will never do a bad thing. All children who are spiritual are important to everyone. A child who is raised being told not to steal and fornicate will never do a bad thing […] It costs nothing to raise children having humanity.” P5 “Religion is crucial. Going to church and praying, and then if we live entrusting to the Lord, He can support us. So that is very crucial. I feel relieved and happy when I get back from church. If we believe in Him [God], He will protect us from all danger.” P6 “Religion is important for all of us. We feel happy when we go and attend church. Everyone’s religion has its own good.” P15 |
Relationships - Relationships within the immediate family - Relationships with the community | “You know… when we all are happy, I am happy. My children are happy.” P8 “Love between family members is necessary. If we care about each other, we can work together and create wealth.” P9 “I have good and kind neighbours who take care of her [child with disability] whenever I go out of the house.” P5 “She [the neighbour] would say that God made my son like this because of my sins. People are bad.” P7 “I don’t socialise with people, for one thing economical reason, for another I can’t handle people’s sarcasm. So, I stay away from everyone. And I am already hurt inside.” P14 |
Self-sufficiency | “You cannot live getting support from other people all your life… if there is something you can work on, I think you can work and change.” P3 “If I can get a place to work and money to stand on my feet [become self-reliant], I will be able to lead my family’s life. There will be no work that will be difficult for me because I am used to doing everything.” P9 “You know people expect others to help until they change for good [...] instead of taking the support for granted and spending it on anything, I want to put it to open up a small café to sell ‘Shiro’ or dry ‘Injera’ [traditional Ethiopian food] by preparing them, and I want to live my life in the future.” P4 “Then, I will be happy if I could help other people. Because I know what my life was like.” P10 |
Parenting responsibilities | “So, raising a child with disability is difficult. You can’t leave them alone, even if you do you will be worried to death whether they fell or not… When I worry about my son and myself, I have a headache.” P4 “Being a parent is so joyful. I love my son with his disability. I would have been happier if he would have been healthy [without disability]. I love the healthy one [the younger child] but I don’t feel as much pain as with the other one [with the disability].” P12 “I am also teaching them to be responsible, respectful of their elders and everyone else, and I advise them to focus on their education.” P16 “Being a parent is really difficult but satisfying when you raise your children and they become successful. Going through a lot of struggle to raise them, you will be happy to see them succeed.” P20 |
Support | “There is also nothing you can do if you don’t have money. It is difficult. But if you have money, you can have a good life.” P11 “Support means not only money but also ideas. Ideas are like giving money.” P10 “She started using a crutch about a month ago and she is trying to get a hold of it. She had some improvement with the physiotherapy, but I had to discontinue it because I couldn’t pay.” P20 “Those with children would look at me differently; they comfort me. Some of them would feel bad for not doing a certain thing. I would say to them that all I want is people who comfort me, not insult me.” P7 |
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Jansen-van Vuuren, J.; Lysaght, R.; Batorowicz, B.; Dawud, S.; Aldersey, H.M. Family Quality of Life and Support: Perceptions of Family Members of Children with Disabilities in Ethiopia. Disabilities 2021, 1, 233-256. https://doi.org/10.3390/disabilities1030018
Jansen-van Vuuren J, Lysaght R, Batorowicz B, Dawud S, Aldersey HM. Family Quality of Life and Support: Perceptions of Family Members of Children with Disabilities in Ethiopia. Disabilities. 2021; 1(3):233-256. https://doi.org/10.3390/disabilities1030018
Chicago/Turabian StyleJansen-van Vuuren, Julia, Rosemary Lysaght, Beata Batorowicz, Solomon Dawud, and Heather Michelle Aldersey. 2021. "Family Quality of Life and Support: Perceptions of Family Members of Children with Disabilities in Ethiopia" Disabilities 1, no. 3: 233-256. https://doi.org/10.3390/disabilities1030018