Perceptions of Siblings of People with Trisomy 21 on Family Relationships

ALMEIDA, Caroline Nóbrega de; ASSIS, Silvana Maria Blascovi; ROCHA, Marina Monzani da; PINTO, Carla Franchi; CARREIRO, Luiz Renato Rodrigues

doi:10.1590/1980-54702023v29e0139

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Research Report • Rev. bras. educ. espec. 29 • 2023 • https://doi.org/10.1590/1980-54702023v29e0139 copy

Perceptions of Siblings of People with Trisomy 21 on Family Relationships² 2 This study was financed in part by the Coordination for the Improvement of Higher Education Personnel - Brasil (CAPES) - Finance Code 001

Percepções de Irmãos de Pessoas com Trissomia 21 sobre as Relações Familiares

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT:

The birth of a child with a disability brings implications, changes in the environment and family dynamics. The family goes through a process of overcoming until the child acceptance with disability and the establishment of a suitable family environment that includes and meets his/her needs. Trisomy 21 (T21) is the most frequent genetic anomaly among those diagnosed. This study aimed to identify the perception of a sibling group of people with T21 regarding their family and social relationships. The sample consisted of 18 adolescents aged between 11 and 16 years, siblings of people with T21, and 17 guardians. Data collection occurred through semi-structured interviews conducted by video calls, with an average duration of 10 to 15 minutes. The interviews were recorded, transcribed and analyzed qualitatively based on the creation of thematic nuclei and categories. The results reinforce the importance of family relationships as a security factor and acceptance of the siblings’ needs.

KEYWORDS:
Family influence; Down syndrome; Family; Psychology; Family relationships

Variables	Frequency	%
Sex
Male	12	66.7
Female	6	33.2
Age
11	1	5.6
12	4	22.2
13	2	11.1
14	1	5.6
15	7	38.9
16	3	16.7
Socioeconomic Level
A	1	5.5
B1	2	11.1
B2	3	16.7
C1	5	27.8
C2	7	38.9
Residence
Minas Gerais	2	11.1
Rio de Janeiro	3	16.7
Rio Grande do Sul	1	5.5
São Paulo	12	66.7
Number of children in families
2	11	61.1
3	6	33.3
4	1	5.5

Variables	Frequency	%
Sex
Male	7	38.9
Female	11	61.1
Age
01 to 05	03	16.7%
06 to 10	11	66.6%
11 to 17	04	22.2%

What do you most like to do with your brother/sister?	What does your brother/sister do that you don’t like?	Participant
I like watching movies with her. (...). We make popcorn and watch movies together, and I like that.	She doesn’t like being with me much. Sometimes, she’s more stressed, and she doesn’t let me get close to her, she doesn’t let me sit on the same bench... (...) I don’t like it when she ignores me.	P2
I like singing songs, and she dances, I laugh, and she laughs along. It’s really cool	I wouldn’t say I like when she slaps me. I know it’s not her fault because she doesn’t think, but nobody likes to be slapped, right?	P13
Basically, I like to do everything... because it’s a feeling that I can’t explain, I feel happy, glad to be by her side (...).	I’m not particularly eager to watch her favorite cartoons on my cell phone. I don’t like when she hits me.	P15
I like watching with her, and I play a lot too... we keep playing... My brother, she and I...we have a lot of fun... because I always see her laughing a lot (...).	Sometimes she gets angry and irritated... she screams a little... there are other times when I’m doing something important, and she wants to play around, and I say I can’t, and I don’t like it very much	P16
When we were little, it was kind of a crazy idea. Each one had in his hand a piece of wood to play.	I’m not patient. I don’t like drawing, painting... He grinds his teeth a lot, and it’s agonizing; you can hear it from far away. When he’s angry about something, he gets jealous, he throws things at us.... he’s special. He needs more treatment. But... he’s ten years old and very needy, emotionally, physically, it’s kind of hard to keep up.	P4
Normal... To play video games, to walk around...	Put the food for her sometimes. I don’t like it because she knows how to do it and gets lazy. Then I go there and put it on some-times.	P18

Perception of the relationship with their parents	Perception of the disabled sibling’s relationship with their parents	Participant
We went out a lot but not anymore. Now we stay in the living room from time to time, and I help with some things at home (...).	It´s good. Talk to my parents and play with them.	P5
When I’m with my father we usually go out to different places... travel a lot, when I’m with my mother I go to the shopping, we buy pizza and stay more at home.	It´s good.	P7
As my father works almost all day (...) from Monday to Friday. At the weekend I have the idea to watch a movie together, make popcorn and go to the park.	The same thing, G. always eats a little junk on the weekend. We order hamburgers and pizza. She always gives ideas too	P16
Normal, we talk to ourselves. She goes out, works... then stays here at home.	Normal, like any mother. Being careful with her. She treats her like us, normal, that sort of thing.	P12
My family and I are very close. Everything that happens, I tell them, everything I do too. I always have my family with me. I play basketball, and my father and mother always watch me play. My sisters have only been there once, but my parents are always there.	They get along really well.	P9

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E-mail: revista.rbee@gmail.com

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Perceptions of Siblings of People with Trisomy 21 on Family Relationships2 2 This study was financed in part by the Coordination for the Improvement of Higher Education Personnel - Brasil (CAPES) - Finance Code 001

Percepções de Irmãos de Pessoas com Trissomia 21 sobre as Relações Familiares

ABSTRACT:

Perceptions of Siblings of People with Trisomy 21 on Family Relationships² 2 This study was financed in part by the Coordination for the Improvement of Higher Education Personnel - Brasil (CAPES) - Finance Code 001