Trajectories of self‐management and independence in youth with spina bifida: Demographic predictors of growth

Aim The purpose of this study was to examine the trajectories of condition and independent living self‐management in youth with spina bifida (SB). Methods A diverse sample of adolescents and young adults (AYAs) with SB completed the Adolescent/Young Adult Self‐Management and Independence Scale (AMIS...

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Published in:Child : care, health & development health & development, 2023-05, Vol.49 (3), p.508-517
Main Authors: Ridosh, Monique M., Adams, William, Magaña, Fabiola, Sawin, Kathleen J., Holmbeck, Grayson N.
Format: Article
Language:English
Subjects:
Adolescent
adolescents
Adult
Age
Behavior change
Congenital Impairments
Demographics
Demography
Ethnicity
Family Income
Female
Hispanic Americans
Humans
independence
Independent living
Latin American cultural groups
Male
Males
Myelomeningocele
Parents
Race
Respondents
Self-Management
Social factors
Spina bifida
Spinal Dysraphism - therapy
trajectory
Young Adult
Young adults
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Summary:Aim The purpose of this study was to examine the trajectories of condition and independent living self‐management in youth with spina bifida (SB). Methods A diverse sample of adolescents and young adults (AYAs) with SB completed the Adolescent/Young Adult Self‐Management and Independence Scale (AMIS‐II) across four time points. Parents reported on demographic characteristics including age, sex, race/ethnicity, and family income. Growth in self‐management and its subscales (condition and independent living) were estimated using linear mixed‐effect models as a function of respondents' demographics. Results This study included 99 respondents age 18 to 27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and about a third were Hispanic/Latino (32.3%). Eighty‐seven AYAs (87.9%) had myelomeningocele. The lesion level was 31.3% sacral, 48.5% lumbar and 18.2% thoracic. A third of the families earned less than 50K. Overall, self‐management growth was dependent on age, sex, and race/ethnicity, but not income. Growth in condition self‐management depended on sex; only males demonstrated increasing growth ( β̂ = 0.11, p 
ISSN:0305-1862
1365-2214
DOI:10.1111/cch.13065