Parents' psychological adjustment in families of children with Spina Bifida: a meta-analysis

Vermaes, I.P.R.; Janssens, Jan; Bosman, A.M.T.; Gerris, Jan

doi:10.1186/1471-2431-5-32

Cited by 87 publications

(102 citation statements)

References 54 publications

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“…3 Sources of stress among these parents include sudden impact life events (for example, at the time of diagnosis and surgery) as well as the repetitive, daily problems (for example, ambulation and incontinence problems) that contribute to chronic impact. 4 These parents need to cope with large amounts of technical medical information, adjust to the new demands on their own daily routines and make important decisions about the medical, social and schooling needs of their children.…”

Section: Introductionmentioning

confidence: 99%

“…[4][5][6][7][8] A meta-analysis has shown that spina bifida has a negative medium-large effect on parental psychological adjustment, with the most important effect on parent-child relationship. 3 Mothers have been shown to be more at risk than fathers, probably because they often are the main caregivers and consequently are more exposed to illness-related situations. 4,9 Few studies have been done among Asian families having children with chronic disorders wherein the social and cultural outlook, as well as medical services, differs.…”

Section: Introductionmentioning

confidence: 99%

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Predictors of parenting stress in mothers of children with spina bifida

et al. 2010

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Study design: Prospective cross-sectional multidimensional study using clinical assessment and standard measures. Objectives: To determine the medical and social factors associated with parenting stress among mothers of children with spina bifida. Setting: Spina bifida clinics of two tertiary hospitals in urban Kuala Lumpur, Malaysia. Methods: A total of 81 mothers of children aged 1-18 years completed the Parenting Stress IndexShort Form (PSI/SF). Each child's adaptive skills were assessed using the Vineland Adaptive Behaviour Scales (VABS), Interview Edition. Medical and social data were obtained from direct interviews and case note reviews. Hierarchical multiple regression analysis was used to investigate factors that were determinants for high scores in the parental distress (PD), difficult child (DC) and parent-child dysfunctional interaction (P-CDI) subdomains of the PSI/SF. Results were expressed as beta coefficient (b) and 95% confidence intervals (95% CIs). Results: Single-parent families (b 8.6, 95% CI 3.4-13.9) and the need for clean intermittent catheterization of bladder (b 3.5, 95% CI 0.7-6.2) were associated with high PD scores. Clean intermittent catheterization (b 3.0, 95% CI 0.5-5.5) was associated with higher DC scores. Lower composite VABS scores (b À0.08, 95% CI À0.02 to À0.15) and mother as the sole caregiver (b 2.6, 95% CI 0.15-4.96) was associated with higher P-CDI scores. Conclusion: The need for clean intermittent catheterization was the only medical factor associated with parenting stress in mothers of children with spina bifida. This was mediated by single parenthood, caregiver status and the child's adaptive skills.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Predictors of parenting stress in mothers of children with spina bifida

et al. 2010

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“…Parents of youth with disabilities experience more stress than parents of able-bodied youth. 1,2 Similarly, caregivers of adults with SCI report experiencing a low quality of life, 3,4 burden 5 and psychological distress. 6 Factors associated with poorer caregiver outcomes include less education, 6 not having a partner, 2 being female, 5,6 having a child of older age 2 and caring for a person/child with behavioral/ emotional problems.…”

Section: Introductionmentioning

confidence: 99%

“…6 Factors associated with poorer caregiver outcomes include less education, 6 not having a partner, 2 being female, 5,6 having a child of older age 2 and caring for a person/child with behavioral/ emotional problems. 2 The impact of injury severity and injury duration is unclear, as some researchers 5 have found that these factors predict poor caregiver outcomes, whereas others 6 have found no such relationship.…”

Section: Introductionmentioning

confidence: 99%

Relationships between the psychological characteristics of youth with spinal cord injury and their primary caregivers

et al. 2010

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Study design: Cross-sectional survey. Objectives: To describe anxiety and depression among caregivers of youth with spinal cord injury (SCI), examine predictors of caregiver psychological functioning and evaluate relationships between caregiver and child psychological outcomes. The protective factor of youth social relationships was also included to examine its impact on relationships between caregiver and child psychological functioning. Setting: Families received services at one of three pediatric specialty hospitals within a single hospital system in the United States. Methods: The study included English-speaking youth with SCI, aged between 7 and 17 years, who had been injured at least one year before, and their self-identified primary caregivers. Participants completed surveys assessing their anxiety, depression and youth's perceived social relationships. Results: The study included 203 youth with an average age of 12.70 years (s.d. ¼ 3.15), and among them 70% had paraplegia. Seventy-eight percent of caregivers were mothers, 14% fathers and 8% other family members. In all, 16 and 21% of caregivers scored in the range of moderate/severe anxiety and depression, respectively. Being female and having a child with mental health problems predicted caregiver anxiety and depression. In addition, having a child who was older at the time of injury predicted caregiver depression. Poor social relationships, having a caregiver with mental health problems and having a caregiver with less education predicted both child anxiety and depression. Conclusion: Caregiver sex, child age at injury and child mental health were related to caregiver outcomes; caregiver education, marital status and child age were not. Caregiver mental health and education and child social relationships predicted child outcomes. Neither injury level nor injury severity was related to caregiver or child outcomes.

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“…Children with SB have a range of disabilities, depending on where in the spinal column formation the defect is located and whether it is closed or open (7). Children with SB do not present simply with flaccid paraplegia below their anatomic lesion.…”

Section: Introductionmentioning

confidence: 99%

Muscle Function of Lower Extremities in Children with Lumbar Spina Bifida: Impact on Functional Status

Ulus¹,

Tander²,

Akyol³

et al. 2014

Turk J Phys Med Rehab

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ÖzetAmaç: Bu çalışmanın amacı spina bifidalı (SB) çocuklarda alt ekstremitelerin kas gücü, kas tonusu ve kontraktürlerinin ambulasyon ve fonksiyonel durum üzerine etkisinin değerlendirilmesi idi. Gereç ve Yöntemler: Spina bifidalı 54 çocuk çalışmaya alındı. Pediatrik Fonksiyonel Bağımsızlık Ölçümü (PFBÖ), tüm çocuklarda alt ekstremitelerde eklem hareket açıklığı, alt ekstremitelerin kas tonusu ve kas gücü, 36 aydan büyük çocukların ambulasyon seviyeleri değerlendirildi. Bulgular: Ambule olmayan ve fonksiyonel ambule olan 36 aydan büyük çocuklar arasında kas gücü ve kas tonusu açısından anlamlı fark vardı (p<0,001). Kas gücü ve kas tonusunun PFBÖ skorları üzerine anlamlı etkisi bulunmazken, kontraktür PFBÖ motor (p=0,001) ve PFBÖ kognitif-toplam (p<0,001) skorları üzerine etkisi bulundu. Otuz altı aydan büyük olan çocuklarda, ambulasyonun PFBÖ kognitif (p=0,019) ve PFBÖ motor-toplam (p<0,001) skorları üzerine anlamlı etkisinin olduğu bulundu. Sonuç: Alt ekstremitelerin kas gücü ve kas tonusu, SB'li çocukların ambulasyonunda önemli olabilir. Ambulasyon ve kontraktürler, bu çocukların fonksiyonel yeteneklerinin önemli belirleyicileri olabilirler. Anahtar Kelimeler: Spina bifida, ambulasyon, dizabilite AbstractObjective: The aim of this study was the evaluation of the impacts of muscle strength, muscle tone, and contractures of the lower extremities on ambulation and functional status in children with spina bifida (SB). The aims of this study were the determination of the demographical and clinical characteristics of Turkish children with spina bifida (SB) and the evaluation of the impacts of the clinical features on ambulation and functional status. Material and Methods: Fifty-four children with SB were included in the study. The Functional Independence Measure for Children (WeeFIM), range of motion in lower extremities, and muscle tone and muscle strength of the lower extremities in all children and the ambulation level of children older than 36 months were evaluated. Results: There were significant differences between the non-ambulant and functional ambulant children older than 36 months in terms of muscle strength and muscle tone (p<0.001). While no significant effects of muscle strength and muscle tone on WeeFIM scores were found (p>0.05), contracture was found to be effective on WeeFIM motor (p=0.001) and WeeFIM cognitive-total (p<0.001) scores by univariate analyses of variance. In children older than 36 months, significant effects of ambulatory status on WeeFIM cognitive (p=0.019) and WeeFIM motor-total (p<0.001) scores were found. Conclusion: Muscle strength and muscle tone of lower extremities may be important for ambulation of children with SB. Ambulatory status and contractures may be important determinants for functional abilities of these children.

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Parents' psychological adjustment in families of children with Spina Bifida: a meta-analysis

Cited by 87 publications

References 54 publications

Predictors of parenting stress in mothers of children with spina bifida

Predictors of parenting stress in mothers of children with spina bifida

Relationships between the psychological characteristics of youth with spinal cord injury and their primary caregivers

Muscle Function of Lower Extremities in Children with Lumbar Spina Bifida: Impact on Functional Status

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