Life Conditions Of Adolescents With Myelomeningocele

Börjeson, Mats; Lagergren, J

doi:10.1111/j.1469-8749.1990.tb08430.x

Cited by 77 publications

(27 citation statements)

References 14 publications

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“…Dating occurs with a significantly lower frequency among adolescents with a physical disability [3,11]. However, findings are not consistent about the degree to which adolescents with physical disabilities engage in sexual behavior.…”

Section: Introductionmentioning

confidence: 99%

“…Research shows that adolescents with physical disabilities are poor informed about general sexual knowledge [3,11,15]. It is suggested that the lack of knowledge has to do with the fact that these adolescents are often isolated from others of their age and that as a consequence this might lead to a lack of opportunities to learn about (their) sexuality or to engage in social activities or sexual experiences [15].…”

Section: Introductionmentioning

confidence: 99%

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Is Love Blind? Sexual Behavior and Psychological Adjustment of Adolescents with Blindness

Kef

Bos

2006

Sex Disabil

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In the present study, we examined sexual knowledge, sexual behavior, and psychological adjustment of adolescents with blindness. The sample included 36 Dutch adolescents who are blind, 16 males and 20 females. Results of the interviews revealed no problems regarding sexual knowledge or psychological adjustment. Sexual behavior however, was more at risk. Adolescents with blindness had less sexual experiences and were older in having sexual experiences compared with youth without disabilities in the Netherlands. Subgroup analysis showed that boys with blindness scored higher on selfesteem if they had sexual intercourse. If boys perceived their family as overprotective they less often experienced sexual intercourse. Furthermore, if boys reported more family opposition, they more often had experienced sexual intercourse. These results were not found for girls in this sample. We would like to recommend to youth with visual impairments to be active in leisure activities, outside their homes, in the presence of peers.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Is Love Blind? Sexual Behavior and Psychological Adjustment of Adolescents with Blindness

Kef

Bos

2006

Sex Disabil

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“…3 However, perceived health has only rarely been studied in this group; most studies have focused on physical independence and living conditions, 4,5 social relationships or vocation, 4-9 feelings of competence, 5, 6, 10 behavioural problems, 8,11,12 or well-being. 4 Parkin et al 13 developed a specific HRQL scale for children and adolescents with spina bifida. This scale consists of 47 items in 10 domains, including physical independence, recreation, emotions, medical care, and finances.…”

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confidence: 99%

Perceived health in young adults with spina bifida

Verhoef

Post

Barf

et al. 2007

Develop Med Child Neuro

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The aims of this study were to compare the perceived health of young adults with spina bifida with a population without disability, and to determine the effect of the disease characteristics and resulting impairments on perceived health. This cross-sectional study is part of the Adolescents with Spina Bifida in the Netherlands study. Data were collected by physical examination and a questionnaire. In total, 179 patients (age range 16-25y) participated in the study and perceived health data were completed for 164 participants (92 females, 72 males; mean age 20y 7mo [SD 2y 9mo]). Twenty-six participants had spina bifida occulta and 138 had spina bifida aperta, of whom 115 also had hydrocephalus. Perceived health was measured with the Medical Outcome Study 36-item Short-form Health Survey (SF-36), a generic health status measure. SF-36 scores of young adults with spina bifida were below those of an agematched population group for six of the eight domains. This difference was largest for the physical functioning domain. Although these differences were statistically significant they were small. Findings for the emotional health domains (vitality, mental health, role problems due to emotional problems) did not differ at all from the population group.The life expectancy of patients with spina bifida has increased and many now live well into adulthood, which leads to new challenges. Most young adults with spina bifida face various impairments and activity limitations due to their condition, 1 which may affect their quality of life. Quality of life is a broad concept, covering aspects of health, participation, satisfaction with functioning, and general well-being. 2 Perceived health, also called self-reported health status or health-related quality of life (HRQL), covers symptoms of a disease or condition and the physical, cognitive, and social problems resulting from the symptoms. The perceived health of young adults with spina bifida is an important concept because it can help improve clinical care by describing the consequences of a disease or condition, and by improving the understanding of the impact of treatment options. 3 However, perceived health has only rarely been studied in this group; most studies have focused on physical independence and living conditions, 4,5 social relationships or vocation, 4-9 feelings of competence, 5, 6, 10 behavioural problems, 8,11,12 or well-being. 4 Parkin et al. 13 developed a specific HRQL scale for children and adolescents with spina bifida. This scale consists of 47 items in 10 domains, including physical independence, recreation, emotions, medical care, and finances. Several researchers have used the questionnaire, reporting good quality of life among young adults with spina bifida. 3,14 Unfortunately, the HRQL has only one total score for all 47 items, so that it cannot differentiate between, for example, physical independence and financial status.Health questionnaires that result in a useful profile of different aspects of health are available, but have rarely been used fo...

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“…Therefore, studies have been performed in order to demonstrate QoL and functional status in SB. In their study on 26 children with myelomeningocele, Börjeson and Lagergren (18) found that 23 of them were able to perform cleaning, dressing, and bathing independently. Buran et al (19) assessed 66 adolescents with SB using WeeFIM and reported that most of them were independent in the areas of eating, cleaning, dressing, mobility, and transfers.…”

Section: Discussionmentioning

confidence: 99%

Assessment of Functional Status and Quality of Life in Children with Spina Bifida

Şahin¹,

Albayrak²,

Durmuş³

et al. 2014

Turk J Phys Med Rehab

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Objective: The aim of this study was to determine functional status and QoL of children with spina bifida (SB) by using the Functional Independence Measure for Children (WeeFIM) and the Child Health Questionnaire PF-50 (CHQPF-50) and to compare the functional status data of pediatric SB patients with those of healthy children. Material and Methods: Forty children with SB and 40 healthy children aged between 36 and 143 months were enrolled in the study. Both pediatric SB patients and healthy children were divided into three age groups: Group 1: 36-71 months, Group 2: 72-107 months, and Group 3: 108-143 months. The WeeFIM and CHQPF-50 were completed for children with SB, whereas the WeeFIM was completed only for healthy children. Results: In both assessments, the total score and subscale scores were lower than normal values in children with SB. However, improvement was found in self-care; communication; social, emotional, and mental status; and family factors with increasing age. On the other hand, there was no improvement in physical score, transfer, mobility, and sphincter control with increasing age. Functional status of children with SB was significantly lower compared to healthy children. Conclusion: There was progress in self-care, communication, family factors, and social, emotional and mental status in children with SB with increasing age.

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Life Conditions Of Adolescents With Myelomeningocele

Cited by 77 publications

References 14 publications

Is Love Blind? Sexual Behavior and Psychological Adjustment of Adolescents with Blindness

Is Love Blind? Sexual Behavior and Psychological Adjustment of Adolescents with Blindness

Perceived health in young adults with spina bifida

Assessment of Functional Status and Quality of Life in Children with Spina Bifida

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