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Adults with spina bifida: A cross-sectional study of health issues and living conditions
Rehab Station Stockholm, Sweden; Karolinska Institutet, Sweden.ORCID iD: 0000-0001-9406-4280
Rehab Station Stockholm, Sweden; Örebro University, Sweden.ORCID iD: 0000-0002-7813-3351
Spinalis Foundation, Sweden.
Karolinska Institutet, Sweden.
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2020 (English)In: Brain and Behavior, ISSN 2162-3279, E-ISSN 2162-3279, Vol. 10, no 8, article id e01736Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To describe health issues and living conditions in a cohort of adults living with Spina bifida.

MATERIAL AND METHODS: A cross-sectional study was conducted by a multidisciplinary team. Adults with spina bifida (n = 219) were invited to participate. One-hundred-and-ninety-six persons (104 women and 92 men; 18-73 years, median age 33 years) were included. Structured interviews, questionnaires, and clinical assessments for medical, social, physical, and cognitive functions were used.

RESULTS: There was large variation among participants as regards the consequences of their spina bifida. Individuals < 46 years seemed to have more secondary conditions such as hydrocephalus, Chiari II malformation, tethered cord symptoms, and latex allergy. A higher proportion of the individuals >46 years and older was able to walk, and they had performed better in primary school and on tests of psychomotor speed and executive function.

CONCLUSIONS: This study demonstrates that adults with spina bifida have a complex set of physical, cognitive, and social needs that need to be addressed in order to improve their health issues and living conditions. The high prevalence of urinary and fecal incontinence, pain, and overweight underline that these issues need much attention during follow-up. The future generations of older adults may need more attention in many ways, since they at a younger age do have more complex medical conditions, lower physical and cognitive functions, and lower prerequisites for independent living and participation in society than those > 46 years today. This elucidates that adults with spina bifida need systematic follow-up services and social support throughout life.

Place, publisher, year, edition, pages
John Wiley & Sons, 2020. Vol. 10, no 8, article id e01736
Keywords [en]
Adult, health issues, living conditions, myelomeningocele, spina bifida
National Category
Gerontology, specialising in Medical and Health Sciences Nursing
Identifiers
URN: urn:nbn:se:rkh:diva-4560DOI: 10.1002/brb3.1736PubMedID: 32633090OAI: oai:DiVA.org:rkh-4560DiVA, id: diva2:1747553
Note

Funding Agencies:

Caroline Montgomery Foundation  

Norrbacka-Eugenia Foundation  

Foundation of Neuro Sweden  

Foundation of Linnea and Josef Carlsson 

Available from: 2020-08-26 Created: 2023-03-30 Last updated: 2023-03-30Bibliographically approved
In thesis
1. Adults with Spina bifida: voices from everyday life and exploration of living conditions
Open this publication in new window or tab >>Adults with Spina bifida: voices from everyday life and exploration of living conditions
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to generate knowledge about living with Spina bifida, by mapping the condition and together with the adults with Spina bifida explore their living conditions and experiences in everyday life. Methods Study I was a quantitative study with a cross-sectional design. In Study II, individual experiences of daily life were explored by deep interviews using a reflective lifeworld approach. Study III had a participatory approach including five members of a photovoice group who met for eight sessions. Photographs taken by the members served as a starting point for the dialogue about what was of interest in their daily life. A narrative analysis was conducted by the researchers, incorporating the analysis the group did together. Study IV focused on alignment with the methodology in which photovoice is grounded. By returning to the ideological cornerstones of photovoice, the empirical experiences from Study III and examples from the literature were elaborated through processes within photovoice. The findings show that those adults with Spina bifida who were >46 years old had less complex medical conditions and better physical and cognitive functions, and had attained a higher level of education. The main theme in Study II was presented as “The contradictory path towards wellbeing in daily life.” In Study III, the members’ experiences in everyday life showed that many solutions offered by society were “An adaptation for us, but it works for no one.” The findings are further presented under three themes: “Accessibility – a never-ending project,” “Tensions of a normative view” and “Power to influence.” By focusing on action and narrative in Study IV, it is shown that dialogue, action, and interaction are important aspects of using photovoice. In conclusion, not all adult persons receive the support they need in everyday life, something future generations of adult persons with Spina bifida may have a higher need for. The stories and experiences of adults with Spina bifida in this thesis paint a history of not being asked, concerning their own situation. This shows that there is insufficient integration of the persons’ experiences in society’s efforts to plan for, and support, these individuals. The photovoice method was feasible for this group, providing opportunity for being part of dialogue, action, and interaction.

Place, publisher, year, edition, pages
Örebro: Örebro University, 2020. p. 83
Series
Örebro studies in medicine, ISSN 1652-4063 ; 225
Keywords
Spina bifida, Adults, Living conditions, Health, Photovoice, Experiences, Ryggmärgsbråck, Vuxna, Levnadsförhållanden, Hälsa, Erfarenheter
National Category
Other Health Sciences
Identifiers
urn:nbn:se:rkh:diva-4573 (URN)978-91-7529-361-5 (ISBN)
Public defence
2020-12-17, Hörsal F, Forumhuset, Örebro, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2023-03-30 Created: 2023-03-30 Last updated: 2023-03-30Bibliographically approved

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