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Journal article

Nonverbal Learning Disability explained: the link to shunted hydrocephalus

Author:
RISSMAN Barbara
Journal article citation:
British Journal of Learning Disabilities, 39(3), September 2011, pp.209-215.
Publisher:
Wiley-Blackwell

Children with a Nonverbal Learning Disability (NLD) resulting from shunted hydrocephalus and spina bifida face many difficulties not experienced by those with a language learning disability. It is believed to be caused by damage, disorder or destruction of neuronal white matter in the brain’s right hemisphere. This article examines the relationship between shunted hydrocephalus and nonverbal learning disability. By linking the medical condition to the learning disability, the article aims to reduce misunderstanding and false accusations of laziness. The article is designed to help teachers,  psychologists, guidance officers, support workers, parents and disability service providers whose role is to understand and advocate for individuals with shunted hydrocephalus and spina bifida. Implications for future research and practice are presented.

Book

Your child and hydrocephalus: a practical guide for families

Author:
ASSOCIATION FOR SPINA BIFIDA AND HYDROCEPHALUS
Publisher:
Association for Spina Bifida and Hydrocephalus
Publication year:
2004
Pagination:
98p.
Place of publication:
Peterborough

This practical guide for parents and family members tackles the major areas of child development with advice and suggestions for parents of children with hydrocephalus. The main areas the book covers includes physical development – how to help your child develop physical skills; developing language – how your child can become a successful communicator; psychological development - the possible effects of hydrocephalus and strategies to manage them; and growing up.

Book

The child with spina bifida

Author:
DINNAGE Rosemary
Publisher:
NFER-Nelson
Publication year:
1986
Pagination:
68p.
Place of publication:
Windsor
Journal article

Transition in young adults with spina bifida: a qualitative study

Authors:
RIDOSH M., et al
Journal article citation:
Child: Care, Health and Development, 37(6), November 2011, pp.866-874.
Publisher:
Wiley-Blackwell

Young adults with spina bifida are at-risk because of the complexity of their condition and social challenges. This qualitative study investigated the transition to adulthood for those with the condition and explored the needs and life skills required during the transition process. Interviews were completed with 10 participants, aged 18 to 25 years. The interview questions focused on specific dimensions of the transition experience related to the ecological model. Findings revealed three themes underlying different dimensions of the young adults' transition experiences. The themes included: struggling for independence; limiting social interactions and experiences with stigma; and building inner strength. The study contributed to a better understanding of the challenges of transition to achieve self-management and social development for young adults with spina bifida. Findings in the life stories highlighted issues that necessitate increased advocacy and interventions from professionals within the health and social system. Implications for practice are discussed.

Journal article

Parents' personality and parenting stress in families of children with spina bifida

Authors:
VERMAES I. P. R., et al
Journal article citation:
Child: Care, Health and Development, 34(5), September 2008, pp.665-674.
Publisher:
Wiley-Blackwell

Based on ideas of the Disability-Stress-Coping Model, relations between the severity of spina bifida (SB), parents' personality traits and parenting stress were examined in this Dutch study. Forty-six mothers and 37 fathers of children with SB (6–14 years) participated. Severity of SB (physical dysfunctions and cognitive functions), parental personality (Big Five) and parenting stress (Parenting Stress Index) were measured. Multiple regression analyses were performed. The severity of the child's physical dysfunctions was positively associated with parenting stress. Extraversion (mothers only), emotional stability and agreeableness (fathers only) were negatively related to parenting stress. In the final model, 64% of the variance in mothers' and 67% of the variance in fathers' levels of parenting stress was explained. Parents' personality traits explained the largest proportions of variance in parenting stress. Mobility, bladder and bowel dysfunctions in school-aged children with SB represent ongoing stressors for parents. Parents' intrapersonal resources of positive affectivity, however, are more important determinants of parental adjustment to SB than the child's physical dysfunctions.

Journal article

Grandparent support for mothers of children with and without physical disabilities

Authors:
CATE Ineke M. Pit-ten, et al
Journal article citation:
Families in Society, 88(1), January 2007, pp.141-146.
Publisher:
The Alliance for Children and Families

Grandparents’ support to families of children with disabilities is generally associated with improved parental well-being. Little research addresses the question of quantitative differences in grandparent support to families of children with and without disabilities. This article examines such differences. Data was collected on 50 mothers of children with spina bifida and 43 mothers of children without disabilities in the United States and results showed how mothers rated perceived maternal and paternal grandparent support. No differences were found between mothers of children with and without disabilities. These results confirm previous findings that grandparent support appears to be no more frequent in families of children with disabilities than in other families. These findings are discussed with reference to sampling limitations and implications for further research.

Journal article

Experiences of participation in a Swedish society among adults with cerebral palsy or spina bifida: involvement and challenges

Authors:
TORNBOM Karin, TORNBOM Marie, SUNNERHAGEN Stibrant
Journal article citation:
Journal of Social Work in Disability and Rehabilitation, 12(4), 2013, pp.256-271.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA

Participation in society is vital to mental health and is beneficial to individuals and society. The goal of this study was to provide insight into how people with cerebral palsy and spina bifida view their experiences of participation and to examine factors that might influence this issue. The results show that participants emphasised the importance of being accepted and treated equally. Living independently and being able to play an active and leading role in their lives was also essential. Participation was described as a process of interaction between a person and society, with mutual responsibility in respect to integration. (Publisher abstract)

Journal article

The many layers of social support: capturing the voices of young people with Spina Bifida and their parents

Authors:
ANTLE Beverley J., MONTGOMERY Gert, STAPLEFORD Christine
Journal article citation:
Health and Social Work, 34(2), May 2009, pp.97-106.
Publisher:
Oxford University Press

Young people with physical disabilities experience greater difficulty than their able-bodied peers in many psychosocial domains as they transition toward adulthood. This Canadian qualitative study involved 50 participants (21 youths with spina bifida and 29 parents) and focused on gaining an insider's perspective on the nature of social support. Building on the work of LaGreca, themes were mapped into four broad support domains: tangible, information, companionship/belonging/mutuality, and emotional. This research indicates that parents provide substantial all-purpose support in each of the four domains. A second major finding shows that support from peers and friends follows a unique and varied path with distinctive characteristics related to the realities of living with a disability. Implications for social work practice with targeted populations and systems are considered.

Journal article

Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions

Authors:
HOLMBECK Grayson N., et al
Journal article citation:
Developmental and Behavioral Pediatrics, 27(3), June 2006, pp.249-277.
Publisher:
Lippincott Williams and Wilkins

Research on the adjustment of families of children with spina bifida is reviewed, with the intention of exploring the impact of the condition on family functioning, assessing the strengths and weaknesses of past research, and identifying the needs for future research on family-based interventions. The literature searches revealed no intervention literature in the field. The 32 studies reviewed indicate relatively low rates of family dysfunction and high levels of family resilience, but do show higher rates of parental psychological distress and parenting stress. The methodological strengths and weaknesses of this body of research are examined in some detail, with recommendations to improve quality and to ensure that sound intervention studies are carried out in the future.

Journal article

Reflections on writing and exhibiting learning disability history: commentary on “Spina Bifida and Hydrocephalus: Our Heritage”

Authors:
JARRETT Simon, GROVE Nicola Clare
Journal article citation:
Tizard Learning Disability Review, 22(3), 2017, pp.132-135.
Publisher:
Emerald

Purpose: The purpose of this paper is to comment on the article “Spina Bifida and Hydrocephalus: Our Heritage – the role of heritage exhibitions in tackling social isolation.” Design/methodology/approach: This provides some further reflection and points for discussion on topics arising from the themes in the original article. Findings: Issues are raised about the medicalisation of conditions and the ways in which a social and cultural model of disability challenges preconceptions and assumptions about personhood and victim status. Reference is made to the broader context of hidden histories and the ways in which people with learning disabilities are now taking active roles in reclaiming the story of their lives in the past and now. Originality/value: The paper aims to raise awareness of critical issues of learning disability history prompted by the original paper. (Publisher abstract)

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