Perception of adolescents with spinal cord injury about autonomy

Correia, Isabel Cristina; Seidl, Eliane Maria Fleury

doi:10.1590/1983-80422022303547EN

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Research • Rev. Bioét. 30 (3) • Jul-Sep 2022 • https://doi.org/10.1590/1983-80422022303547EN copy

Perception of adolescents with spinal cord injury about autonomy

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

Starting from the referential of patient's human rights and considering that bioethical aspects of relational autonomy are important in the construction of autonomy as a life project, this study analyzed the perception of the autonomy process in adolescents with spinal cord injury participating in a rehabilitation program. This is a cross-sectional quali-quantitative study that used interviews to collect data and the Iramuteq software to analyze them. Fourteen adolescents participated, 50% male, 29% living in the Federal District, 71% with paraplegia. The qualitative data analysis identified five classes: rehabilitation program (20.9%); autonomy (21.8%); family relations (16.7%); feelings and experiences (23.9%); and routine (16.7%). The mother was indicated as the main caregiver (64%) and autonomy was often related to the concept of independence. Other forms of relationships corroborated the model of relational autonomy, and intrinsic and extrinsic challenges to the condition of the participants analyzed from the perspective of patient's human rights were also identified.

Keywords:
Adolescent; Personal autonomy; Human rights; Rehabilitation; Bioethics

Adolescent	Gender	Age	Cause of injury	Injury level	Educational attainment	Origin
1	M	18	Fall from height	Paraplegia	Higher education	Brasília/DF
2	M	16	Car accident	Paraplegia	1st year of high school	Brasília/DF
3	M	17	Transverse myelitis	Paraplegia	2nd year of high school	Ariquemes/RO
4	F	14	Transverse myelitis	Paraplegia	9th school year	Brasília/DF
5	M	16	Shallow diving	Tetraplegia	2nd year of high school	Monte Carmelo, MG
6	F	16	Car accident	Paraplegia	2nd year of high school	Santa Rosa do Sul/SC
7	F	13	Transverse myelitis	Paraparesis	9th school year	Pimenta Bueno/RO
8	F	16	Cauda equina syndrome	Paraparesis	2nd year of high school	Costa Rica/MS
9	F	12	Car accident	Paraplegia	7th school year	Pontes de Lacerda/MT
10	M	12	Car accident	Paraplegia	7th school year	Campo Verde/MS
11	M	18	Gunshot wound	Paraplegia	10th school year	Araguaína/TO
12	M	15	Gunshot wound	Paraplegia	8th school year	Formosa/GO
13	F	16	Car accident	Paraplegia	2nd year of high school	Sinop/MT
14	F	12	Intramedullary tumor	Paraplegia	8th school year	Valparaíso/GO

Class 5 16.7%			Class 2 21.8%			Class 1 20.9%			Class 4 23.9%			Class 3 16.7%
Word	χ²	%	Word	χ²	%	Word	χ²	%	Word	χ²	%	Word	χ²	%
School	61.02	63.64	Autonomy	33.34	71.43	Lack	51.97	100.00	Talking	18.15	51.35	Family	37.06	73.33
Routine	56.54	86.67	Alone	32.15	76.47	Sarah	50.15	88.24	Problem	18.04	180.00	People	29.66	50.00
Agreement	46.80	100.00	Program	28.10	83.33	Accompanies	35.34	100.00	See	17.39	58.33	Calm	25.55	100.00
Organize	46.29	80.00	Thinking	76.92	24.54	Supply	35.34	100.00	Thus	16.86	48.78	Siblings	23.46	58.82
Afternoon	41.42	100.00	Want	52.78	23.96	A lot	27.29	70.59	Person	16.77	55.56	Especially	19.71	83.33
Sleep	40.45	90.00	Future	100.00	18.33	Learn	26.58	73.33	Moment	12.94	100.00	Mother	16.92	38.10
Go out	38.57	63.64	Choice	100.00	18.33	Get	23.71	68.75	No	11.94	31.69	Better	16.90	66.62
Watch	36.08	100.00	Clothing	85.71	17.30	Help	19.39	69.23	Catch	11.87	75.00	Normal	15.85	58.33
Room	36.08	100.00	Exercise	100.00	14.60	Here	18.91	50.00	Say	09.85	56.25	Well	15.60	50.00
Final	30.79	100.00	Decide	83.33	13.68	Service	18.26	77.78	Always	09.83	48.15	Take	05.78	71.43
Night	30.79	100.00	Rehabilitation	63.64	01.86	Because	12.62	36.51	Accessible	09.66	100.00	Grandmother	15.78	71.43
Coffee	30.79	100.00	Live	71.43	10.43	Help	12.23	40.00	Be born	09.66	100.00	Month	15.19	100.00
Lunch	30.79	100.00	Wear	80.00	10.16	Need	11.82	66.67	Improve	09.66	100.00	Discover	14.76	80.00
Take	30.46	64.71	Question	62.50	08.05	Present	11.47	100.00	Jeans	09.66	100.00	Play	14.12	60.00
Arrive	30.17	80.00	Count	66.67	07.27	Evolve	11.47	100.00	Pants	09.66	100.00	Get used to	11.08	66.62
Friend	25.55	100.00	Still	54.55	07.26	Treatment	10.76	80.00	Bullying	09.66	100.00	Father	10.19	55.56
Week	25.17	77.78	Thing	32.86	07.17	Accept	10.76	80.00	Talking	08.94	71.43	Beginning	09.97	75.90
Cell phone	20.35	100.00	Head	75.00	06.76	Need	10.76	80.00	God	08.82	80.00	Uncle	08.51	57.14
Home	17.83	47.83	Pass	60.00	04.38	Walk	08.81	45.45	Bladder	08.82	80.00	Like	06.91	60.00
Dinner	15.19	100.00	Depend	60.00	04.38	Surgery	07.60	50.00	Physician	07.47	60.00	Familiar	05.08	45.40
TV	15.19	100.00	Bath	50.00	03.87	Decision	06.77	55.56	Until	06.77	53.85	When	03.79	29.17
Routine of adolescent with spinal cord injury			Autonomy of adolescents with spinal cord injury			Rehabilitation program of adolescents with spinal cord injury			Feelings and experiences of adolescents with spinal cord injury			Family relationships of adolescents with spinal cord injury

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E-mail: bioetica@portalmedico.org.br

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[1] Correspondence Isabel Cristina Correia – Quadra 208, lote 5, ap. 1309, Águas Claras CEP 71926-500. Brasília, DF, Brasil.