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Adults with Spina bifida: voices from everyday life and exploration of living conditions
Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Örebro universitet, Institutionen för hälsovetenskaper.ORCID iD: 0000-0002-7813-3351
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 [en]
Spina bifida, Adults, Living conditions, Health, Photovoice, Experiences
Keywords [sv]
Ryggmärgsbråck, Vuxna, Levnadsförhållanden, Hälsa, Erfarenheter
National Category
Other Health Sciences
Identifiers
URN: urn:nbn:se:esh:diva-8635Libris ID: drrsrhfsbn36c2pwISBN: 978-91-7529-361-5 (print)OAI: oai:DiVA.org:esh-8635DiVA, id: diva2:1530414
Public defence
2020-12-17, Örebro universitet, Forumhuset, Hörsal F, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2021-02-22 Created: 2021-02-22 Last updated: 2021-03-02Bibliographically approved
List of papers
1. Adults with spina bifida: A cross-sectional study of health issues and living conditions.
Open this publication in new window or tab >>Adults with spina bifida: A cross-sectional study of health issues and living conditions.
Show others...
2020 (English)In: Brain and Behavior, ISSN 2162-3279, E-ISSN 2162-3279, Vol. 10, no 8, p. 1-12, article id brb3.1736Article 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.

Keywords
Adult, Health issues, Living conditions, Myelomeningocele, Spina bifida
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8308 (URN)10.1002/brb3.1736 (DOI)32633090 (PubMedID)
Available from: 2020-08-20 Created: 2020-08-20 Last updated: 2023-02-07Bibliographically approved
2. Reflections on Health of Young Adults with Spina Bifida: The Contradictory Path towards Well-Being in Daily Life
Open this publication in new window or tab >>Reflections on Health of Young Adults with Spina Bifida: The Contradictory Path towards Well-Being in Daily Life
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.

Keywords
Spina bifida, Adults, Health, Qualitative study
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8190 (URN)10.4236/ojn.2015.54033 (DOI)
Available from: 2020-06-08 Created: 2020-06-08 Last updated: 2021-02-22Bibliographically approved
3. Views on everyday life among adults with spina bifida: an exploration through photovoice
Open this publication in new window or tab >>Views on everyday life among adults with spina bifida: an exploration through photovoice
2020 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 15, no 1, p. 1-12, article id 1830702Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to actively integrate expertise of persons living with spina bifida, to explore conditions embedded in their everyday life. This was important because young adults with spina bifida risk not being able to fully participate in the community on equal terms and in accordance with their own preferences. Photovoice, a community-based participatory research approach, was utilized to engage participants through dialogue and photography. An exhibition was created to share results with community and stakeholders. An overarching theme that characterized the experiences of the group was, "an adaptation for us, but it works for no one". Findings are presented as: "Accessibility-a never-ending project," "Tensions of a normative view," and "Power to influence." Findings integrated everyday life metaphors photographically depicted by broken elevators, unsafe transportation, closed doors and not experiencing real opportunities of involvement. Tensions in everyday life experienced by persons living with spina bifida can inform conditions relevant and necessary to support community participation, particulary among persons living with disability.

Keywords
Spina bifida, Adults, Community-based participatory research, Photovoice
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8451 (URN)10.1080/17482631.2020.1830702 (DOI)000584636400001 ()33146083 (PubMedID)
Available from: 2020-11-09 Created: 2020-11-09 Last updated: 2021-10-11Bibliographically approved
4. Photovoice revisited: Dialogue and Action as Pivotal
Open this publication in new window or tab >>Photovoice revisited: Dialogue and Action as Pivotal
2022 (English)In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 32, no 5, p. 814-822, article id 10497323221077300Article in journal (Refereed) Published
Abstract [en]

Photovoice has gained acceptance as a viable visual method to engage community members as partners in research. However, as methods associated with photovoice have developed and evolved over time, concerns have also been raised with regard to how this impacts the methodological underpinnings on which photovoice rests. The aim of this article is to explore the meaning of dialogue and action as methodologically pivotal for the relevance of photovoice as community-based participatory research; further, using an empirical case and narrative theory, we attempt to contribute to an understanding of the processes that facilitate the viability and relevance of photovoice. By unpacking the contributions of dialogue and action towards a participatory methodology, in this case photovoice, the authors illustrate and argue for aspects critical in photovoice. Drawing on these aspects provides an arena for storytelling and story making, which have not previously had an explicit part in photovoice.

Keywords
Developmental disability, Disability, Narrative theory, Photovoice methodology
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8636 (URN)10.1177/10497323221077300 (DOI)000765330400001 ()35245157 (PubMedID)
Note

Title in dissertation: Photovoice revisited: an analysis of the process and methodology

Publication status in dissertation: Manuscript (preprint)

Available from: 2020-11-23 Created: 2021-02-22 Last updated: 2022-06-10Bibliographically approved

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