Self-management and independence guidelines for the care of people with spina bifida

Logan, Lynne Romeiser; Sawin, Kathleen J.; Bellin, Melissa H.; Brei, Timothy J.; Woodward, Julie

doi:10.3233/prm-200734

Cited by 15 publications

(12 citation statements)

References 77 publications

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“…Self‐management is ‘an active daily and flexible process in which youth and their parents share responsibility and decision making for managing their condition, health, and well‐being through a wide range of knowledge, attitudes, activities, and skills. The goal of this increasing responsibility is to develop skills needed for transition to adulthood and independent living’ (Logan et al, 2020, p. 583; Sawin et al, 2009; Schilling et al, 2002). The process by which self‐management develops includes knowledge and beliefs, self‐regulation skills and abilities, and social facilitation as relevant correlates (Ryan & Sawin, 2009).…”

Section: Introductionmentioning

confidence: 99%

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

Ridosh

Adams

Magaña

et al. 2022

Child

Self Cite

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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 ( b β = 0.11, p < 0.001). Black participants endorsed higher increasing total and condition self-management when compared with White ( b β diff = 0.17 and 0.17, respectively, both p < 0.05) and Hispanic/Latino ( b β diff = 0.18 and 0.21, respectively, both p = 0.02) respondents. Conclusion:This study provides evidence of differences in growth of selfmanagement by demographic/social determinants of health. Possible reasons for differences are discussed. Predictors of changes in self-management behaviours over time in young adults with SB can identify subgroups in need of further study.

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Section: Introductionmentioning

confidence: 99%

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

Ridosh

Adams

Magaña

et al. 2022

Child

Self Cite

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“…Adolescents often experience tension between being cared for by their parents and being independent, and they worry about their future, particularly as they become adults and prepare to transition to an independent life [ 34 ]. As suggested by previous studies [ 6 , 31 , 34 , 35 , 37 , 38 ], to prompt the transition of adolescents with SB, it is necessary to encourage desirable parenting styles for parents raising children with SB.…”

Section: Discussionmentioning

confidence: 99%

“…As culture is an important factor that can influence people’s thoughts and behaviors [ 16 , 19 , 34 , 40 ], the sociocultural barriers identified in this study need to be addressed considering the Korean context, in which self-concept develops from an interdependent perspective [ 16 ]. Above all, self-concept, including self-esteem, self-confidence, and self-efficacy, is crucial to improve the self-management and independence of adolescents with SB [ 35 ]. Establishing a self-concept embracing one’s chronic condition or disability is also important for maintaining daily life and for growing into an independent adult [ 19 , 34 ].…”

Section: Discussionmentioning

confidence: 99%

Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study

et al. 2023

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Background Transition to adulthood to live independently while self-managing health and daily life without parental help is crucial for young adults with chronic conditions. Despite its importance as a precursor to effectively managing lifelong conditions, little is known about the experiences of young adults with spina bifida (SB) in transition to adulthood in Asian countries. This study aimed to explore the experiences of Korean young adults with SB to identify the facilitators or barriers to the transition from adolescence to adulthood from their perspectives. Methods This study used a qualitative descriptive design. The data were collected in South Korea through three focus group interviews with 16 young adults with SB, aged 19–26, from August to November 2020. We conducted a qualitative content analysis using a conventional approach to identify the factors that facilitated and hindered the participants’ transition to adulthood. Results Two themes emerged as facilitators and barriers to the transition to adulthood. a) Facilitators: understanding and acceptance of SB, acquiring self-management skills, parenting styles encouraging autonomy, parents’ emotional support, school teachers’ thoughtful consideration, and participation in self-help groups. b) Barriers: overprotective parenting style, experience of being bullied by peers, damaged self-concept, concealing one’s chronic condition from others, and the lack of privacy in school restrooms. Conclusions Korean young adults with SB shared their experiences of struggling to properly manage their chronic conditions on their own, particularly concerning regular bladder emptying, during the transition from adolescence to adulthood. To facilitate the transition to adulthood, education on the SB and self-management for adolescents with SB and on parenting styles for their parents are important. To eliminate barriers to the transition to adulthood, improving negative perceptions of disability among students and teachers and making school restrooms CIC-friendly are needed.

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“…• Incremental involvement of the child in self-management activities and transition from the parent performing to the child performing with parental oversight and to the adolescent performing without parental oversight is recommended. 61 sleep assessMenT…”

Section: Self-carementioning

confidence: 99%

Spina Bifida

Davis¹,

Swanson-Kimani²,

Sinn³

et al. 2022

Handbook of Pediatric Rehabilitation Medicine

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The term spina bifida (SB) encompasses both open and closed spinal neural tube defects (NTDs) but most commonly refers to myelomeningocele (MMC), an open spinal NTD with a lesion draining cerebrospinal fluid (CSF), with exposed neural tissue and malformations of the brain and spinal cord. 1-4 A closed spinal NTD typically has a lesion with no CSF leakage and sometimes contains malformations of the spinal cord alone. 4

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Self-management and independence guidelines for the care of people with spina bifida

Cited by 15 publications

References 77 publications

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

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

Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study

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