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Reflections on Health of Young Adults with Spina Bifida: The Contradictory Path towards Well-Being in Daily Life
Rehab Station Stockholm, Sweden; Ersta Sköndal University College, Sweden.ORCID iD: 0000-0002-7813-3351
Ersta Sköndal University College, Sweden; Örebro University Hospital, Sweden.ORCID iD: 0000-0002-4531-0454
Ersta Sköndal University College, Sweden..
2015 (English)In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 5, no 4, p. 303-312Article in journal (Refereed) Published
Abstract [en]

Background: An individual with SB needs to deal with long standing illnesses and is often viewed as having a disability that needs to be compensated for. This medical condition is an example of malfunction of the body, though congenital, and could be seen as an outside-perspective to the individual human being. It is important that the required medical treatment is offered to an individual with SB, but such medical treatment alone would not encompass the full health spectrum for an individual in this specific situation. A question to be raised is how this specific group of individuals experience health.

Aim: To describe the experience of daily life for young adults with SB through a theoretical lens of health.

Method: This qualitative study was conducted using a reflective lifeworld approach with an interpretive part. In the lifeworld theory it is understood that all our doings, feelings and thoughts are experienced through the lifeworld. The interview questions were open and non-standardised.

Findings: The main theme was formulated as The contradictory path towards well-being in daily life, and was constructed on the sub-themes: Not understanding and taking responsibility for the lower body, Having people standing behind me—not being allowed to grow up myself, Compared to people like me, I usually do well, I thought it would work out by itself, and A lack of structure in daily life.

Conclusion: The study indicates that young adults with SB have a diminished health and well-being and that they have a contradictory path to travel towards independency which is of great concern for this group of individuals. Differences in views of independence constitute a problem and it is important for health care providers to be aware of the individuals’ perspective on independence. This notion is something that needs to be taken into account when designing support programs for these individuals.

Place, publisher, year, edition, pages
Bentham Open , 2015. Vol. 5, no 4, p. 303-312
Keywords [en]
Spina bifida, Adults, Health, Qualitative study
National Category
Nursing
Identifiers
URN: urn:nbn:se:rkh:diva-4567DOI: 10.4236/ojn.2015.54033OAI: oai:DiVA.org:rkh-4567DiVA, id: diva2:1747586
Available from: 2020-06-08 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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