Objective: To describe problematic aspects of faecal incontinence according to the experience of adults with spina bifida.
Design: Qualitative interview study.
Subjects: Eleven adults with spina bifida and bowel problems.
Method: Semi-structured open-ended interviews and qualitative analysis.
Results: Problematic aspects were related to participation in terms of time consumption, communication, social isolation, love and sexuality, and accessibility. Also, to a sense of helplessness in terms of panic and worry, to a sense of shame in terms of impurity, social acceptance and self-image, and to bowel function in terms of decisions about colostomy, voluntary constipation, and changing patterns.
Conclusion: The results reveal aspects relevant to supporting clinical practice and suggesting issues for questionnaire studies.
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http://dx.doi.org/10.2340/16501977-0373 | DOI Listing |
J Child Psychol Psychiatry
January 2025
Epidemiology Branch, Division of Population Health Research, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, MD, USA.
Background: Neighborhood quality may contribute to child mental health, but families with young children often move, and residential instability has also been tied to adverse mental health. This study's primary goal was to disentangle the effects of neighborhood quality from those of residential instability on mental health in middle childhood.
Methods: 1,946 children from 1,652 families in the Upstate KIDS cohort from New York state, US, were followed prospectively from birth to age 10.
Disabil Rehabil Assist Technol
January 2025
Faculty of Health, Southern Cross University, Queensland, Australia.
Purpose: An assistive technology ecosystem requires co-ordinated collaboration between policy, products, provision processes, and personnel. A needs assessment was conducted of the assistive technology sector in Queensland to examine these components from the perspective of all key stakeholders. This paper reports the findings of the expressed needs of the assistive technology sector as experienced by the AT advisors and suppliers.
View Article and Find Full Text PDFJ Intellect Dev Disabil
March 2024
Department of Psychiatry, Hanyang University Medical Center, Seoul, Republic of Korea.
Background: Limited data exist on problematic sexual behaviour (PSB) in youth with developmental disabilities in South Korea.
Method: Sixty-one parents of children with intellectual disabilities or autism spectrum disorder (aged 13-30) reported children's PSB and emotional, behavioural, cognitive, and interpersonal factors. The frequency of PSB in children with developmental disabilities was verified, and various factors' effects on PSB were examined through multiple linear regression analysis.
PLoS One
January 2025
Little Steps Association for Children with Duchenne Muscular Dystrophy and Becker Muscular Dystrophy, Kefar Saba, Israel.
For individuals with Duchenne or Becker muscular dystrophy (DMD and BMD, respectively), transitioning to adulthood presents significant challenges. Although considerable attention has been given to facilitating medical transitions due to the complexity of these conditions, less focus has been placed on other aspects of the transition, such as achieving independence. This study assessed the transition needs of people with DMD or BMD, exploring various domains including health, education, employment, living arrangements, transportation, daily activities, and independent personal life.
View Article and Find Full Text PDFAgency - the capacity to produce an effect - is a foundational aspect of medical education. Agency is usually conceptualized at the level of the , with each learner charged with taking responsibility to pull themselves up by their bootstraps. This conceptualization is problematic.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!