Acquisition of autonomy skills in adolescents with myelomeningocele

Davis, Beth E.; Shurtleff, David B.; Walker, William O.; Seidel, Kristie D; Duguay, Sharon

doi:10.1017/s0012162206000569

Cited by 69 publications

(60 citation statements)

References 15 publications

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“…We found individuals with spinal lesions at or above L2 had lower scores on transfers and basic mobility, sports and physical function, and global function scores on the PODCI as well as health scores on the PedsQL TM than those with L3-5 lesions. These findings are similar to those of some other studies [5,9,14,18]. In general, children scoring in the low 80s or below on the PODCI typically function at a lower level than their normally developing peers [10].…”

Section: Discussionsupporting

confidence: 90%

“…Many other studies reported a similar association [2,3,11,12,16,28]. Davis et al [9] looked at 158 adolescents and reported 84% of the individuals were shunted. They found the subjects had a 25% to 30% delay in autonomy skills, which was explained by cognitive ability more than the level of lesion [9].…”

Section: Discussionmentioning

confidence: 72%

“…Davis et al [9] looked at 158 adolescents and reported 84% of the individuals were shunted. They found the subjects had a 25% to 30% delay in autonomy skills, which was explained by cognitive ability more than the level of lesion [9]. We found age had little effect on HRQOL other than evidence of lower sports and physical function scores on the PODCI for those children who were older.…”

Section: Discussionmentioning

confidence: 99%

“…Parents of the 50 subjects were interviewed in person during the MM clinic using two HRQOL outcome tools: the PedsQL TM Version 4.0 [7,[24][25][26][27] parent version for young children (ages 5-7), children (ages [8][9][10][11][12], and the teen report (ages [13][14][15][16][17][18]; and the PODCI Version 2.0 [10] parent form for children (ages 2-18). Because of concerns about time and length of the instrument, 22% of the parents declined to complete the PODCI questionnaire.…”

Section: Methodsmentioning

confidence: 99%

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Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

Flanagan¹,

Gorzkowski²,

Altıok³

et al. 2011

Clinical Orthopaedics &Amp; Related Research

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Background To provide the best health care for individuals with myelomeningocele (MM), clinicians and researchers need to understand their health and functional status as well as quality of life. The literature is mixed regarding the relationship between motor level and health-related quality of life (HRQOL) for these individuals. Questions/purposes We compared the HRQOL of children with MM at the L2 and above and L3-5 motor level and to demonstrate how having a shunt, age, and body mass index affect HRQOL instruments for these two motor level groups. Methods We recruited 50 patients with MM (24 male, 26 female) with a mean age of 11.5 years (range, 5-18 years) and motor levels of L2 and above (n = 15) and L3-5 (n = 35). Guardians were interviewed using standardized functional and HRQOL tools (the Pediatric Quality of Life and the Pediatric Outcomes Data Collection Instrument); height, weight, presence of a shunt, ambulatory level, and body mass index were also collected. Results We found a decreased HRQOL score for children with MM in the L2 and above motor level compared with those in the L3-5 motor level group. HRQOL had no correlation with body mass index and limited correlation with age.

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Section: Discussionsupporting

confidence: 90%

Section: Discussionmentioning

confidence: 72%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

See 2 more Smart Citations

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

Flanagan¹,

Gorzkowski²,

Altıok³

et al. 2011

Clinical Orthopaedics &Amp; Related Research

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“…Atualmente, têm-se as primeiras gerações adultas com MMC, gerando uma nova demanda de cuidados para a enfermagem de reabilitação. O enfermeiro de reabilitação desempenha um papel fundamental para que a pessoa com MMC atinja o máximo de seu potencial funcional, considerando os limites decorrentes de sua lesão (5) .…”

Section: Introductionunclassified

<b>Reabilitação de crianças e adolescentes com mielomeningocele: relato de experiência de atuação da enfermagem/Rehabilitation of children and adolescents with myelomeningocele: nursing practice report<b>

Freitas¹,

Sena²,

Silva³

et al. 2016

Cienc. Cuid. Saúde

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RESUMOO artigo foi desenvolvido por enfermeiras com mais de cinco anos de atuação, em uma rede de hospitais de reabilitação no Brasil, referência em toda a América Latina. O objetivo do presente estudo é de relatar a atuação de enfermeiras na reabilitação de crianças e adolescentes com mielomeningocele. As autoras realizaram reuniões presenciais e por videoconferência, discussões e troca de experiências até o consenso e validação do conteúdo. O relato foi organizado e dividido em três tópicos: capacitação para as atividades de vida diária; capacitação para a reabilitação vesicointestinal; capacitação para as atividades de vida prática: autonomia e participação. As famílias de indivíduos com mielomeningocele enfrentam dificuldades relacionadas à condição crônica e à escassez de serviço estruturado e humanizado que garanta e capacite quanto ao cuidado domiciliar. O desafio é fornecer subsídios que orientem profissionais na manutenção do cuidado domiciliar, melhorando a comunicação e promovendo a capacitação dos familiares das crianças e adolescentes com mielomeningocele.Palavras-chave: Reabilitação. Meningomielocele. Enfermagem.

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Psychosocial and family functioning in spina bifida

Holmbeck

Devine

2010

Dev Disabil Res Revs

106

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A developmentally-oriented bio-neuropsychosocial model is introduced to explain variation in family functioning and psychosocial adjustment in youth and young adults with spina bifida (SB). Research on the family functioning and psychosocial adjustment of individuals with SB is reviewed. The findings of past research on families of youth with SB support a resiliencedisruption view of family functioning. That is, the presence of a child with SB disrupts normative family functioning, but many families adapt to such disruption and exhibit considerable resilience in the face of adversity. Parents of youth with SB, and particularly those from lower SES homes, are at-risk for psychosocial difficulties. Individuals with SB are at-risk for developing internalizing symptoms, attention problems, educational difficulties, social maladjustment, and delays in the development of independent functioning. Emerging adults are often delayed in achieving milestones related to this stage of development (e.g., vocational and educational achievements). Methodologically-sound, longitudinal, and theory-driven studies of family and psychosocial functioning are needed, as are randomized family-based intervention trials, to promote adaptive functioning and better psychosocial outcomes in families of individuals with SB. Keywords spina bifida; psychosocial adjustment; family; children; adolescents; emerging adults Psychosocial and Family Functioning in Spina BifidaSpina bifida (SB) is a relatively common congenital birth defect that has a pervasive multisystemic impact on the physical, neurocognitive, psychological, and social functioning of affected individuals. Historically, most of the research on SB has focused on the physical and neurocognitive domains, with less attention paid to the psychological and social domains of functioning. However, it is well known that the clinical symptoms of SB place considerable physical, psychological, and social demands on the individuals and families involved Holmbeck et al., 2003;Kelly et al., 2008;Singh 2003]. Specifically, all of the following SB-related stressors likely have a significant and cumulative impact on individual and family functioning: (1) the cognitive and neurological features of SB, particularly the most common type of spinal lesion, myelomeningocele (e.g., executive functioning deficits, attention problems, learning difficulties; see Dennis and Barnes, in press), (2) the effects of SB on physical development [e.g., precocious puberty, short stature, and obesity are all more common in this population than in the general population; Dosa et al., 2009], (3) the multiple surgical procedures experienced by most individuals in this population (e.g., shunt revisions, orthopedic surgeries), (4) the difficulties with bowel and bladder management as well as ambulation challenges, (5) the characteristic

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Acquisition of autonomy skills in adolescents with myelomeningocele

Cited by 69 publications

References 15 publications

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

<b>Reabilitação de crianças e adolescentes com mielomeningocele: relato de experiência de atuação da enfermagem/Rehabilitation of children and adolescents with myelomeningocele: nursing practice report<b>

Psychosocial and family functioning in spina bifida

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