Living conditions for adults living with Spina Bifida

Hanna Gabrielsson is a nurse and a PhD student with many years of experience of working with patients with spinal cord injuries as well as Spina Bifida (SB). She has been working at Rehab Station Stockholm and Spinalis Unit since 2006 and her PhD thesis concerns living conditions for adults living with Spina Bifida.

 

The 17th of December Hanna Gabrielsson will publicly defend her doctoral thesis:

Adults with Spina Bifida – voices from everyday life and exploration of living conditions.

 

Background:

Adults with Spina Bifida (SB) is a growing group due to a longer life spam. Even so, SB is a rare condition and fewer children are born with SB due to better fetal diagnosis as well as better knowledge about the importance of folic acid during pregnancy. 

In addition to physical impairments, SB often leads to cognitive deficits. The range of severity of these impairments are wide, hence SB is a very heterogenous group.

Executive cognitive impairments can entail challenges when it comes to independence, employment and participation in daily activities. The aim of the study was to generate knowledge about living conditions for adults living with SB by involving the target group itself.

 

Method:

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 persons with SB. They participated in 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. The photographs from study III resulted in an exhibition shown at multiple locations, including Norway at Sunnaas rehabilitation hospital, National resource centre for rare disorders.

 

Results: 

In conclusion the study shows a lack of adequate support in everyday life for people living with SB. The experiences shared by adults with SB in the thesis paint a history of not being asked concerning their own situation. 

The study shows that there is insufficient integration of personal impact when it comes to support for these individuals. The photovoice method was feasible for the target group and might even be suitable for clinical practice providing opportunity for being part of dialogue, action, and interaction.