Dorothee Riedel, occupational therapist and employee at the Spinalis Foundation, published an article on spina bifida and cognition in the Journal of Rehabilitation Medicine.
Dorothee’s study shows that many people living with spina bifida have cognitive disabilities and do not receive the support from society they would need to live an independent life.
“Individuals with spina bifida often have cognitive impairments, resulting in difficulties in performing their everyday life activities at home, in education, training and social life.
These difficulties are often not recognized, and the individuals do not receive the support they need from society.
This study investigated the relationship between cognitive impairments, school achievements and performance of daily life activities of 35 adults with spina bifida.
The study examined whether individuals had an intellectual disability, and whether they had completed compulsory education, and compared this with their cognitive function and performance in everyday activities.
The results confirm that individuals with cognitive impairments, even those without intellectual disabilities, often have considerable difficulties in school achievements, and performance of daily life activities, reducing their ability to live independently. “
ISCoS stands for The International Spinal Cord Society. The organization strives to promote education, research and work at the spinal cord injury clinics around the world. ISCoS currently has members from clinics and researchers from 87 countries. They regularly update their knowledge at the Annual Scientific Meeting held in a different country each year. This year is a bit different due to the pandemic therefor the meeting will be held virtual — don’t miss the opportunity to discuss and exchange ideas live with the presenters.
A global webinair sponsored by Sustain our abilities. Listen to Claes Hultling who gives the lecture “Men really want intercourse”.
When: February 13 2021, time 9-12 (Eastern Standard time, NY, USA)
How: A zoom webinar that will stream live on YouTube Sustain our Abilities
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.
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.
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.
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.
Pregnancy among female with spinal cord injury is possible but intails challenges for mother as well as healthcare professionals. Lack of support when it comes to knowledge within obstetrics, pediatrics as well as the postpartum period is common within this group of women.
This study aims to explore neonatal results, growth and nursing (breastfeed?) during the first six months among children of spinal cord injured mothers.
The study is a retrospective kohort based on journal data.
67 maternity records and 32 records from child health care were collected from children born in Sweden between 1976 and 2018. Children of spinal cord injured mothers were smaller at birth (weight and length) as compared to average. No overall difference was observed at three months of age. No difference in breastfeeding duration compared to average was observed but mothers with high spinal cord injuries (Th6 and above) breastfed shorter as compared to women with injuries below Th6.
As far as we know this is the first study to explore growth in children to spinal cord injured mothers. Our results indicate that they show a lower birth weight and birth length compared to the average population and that children of mothers with high spinal cord injuries breastfeed for a shorter period of time. Further studies are needed to validate (confirm?) these findings and to find possible causes.
We are happy to announce a new collaboration with Coloplast. Our common goal is to develop products and services to ease intimate helthcare needs for people with spinal cord injury. Coloplast has developed innovations based on user centered design for a long time. Spinalis foundation contributes with up to date research as well as a great knowledge about everyday life with spinal cord injury and its challenges.
We look forward to this exciting collaboration which will enrich both parts.
My name is Max Nilén and I am an actor. I am passionate about creating my own projects and using film and theater as a means of giving people thoughts and reflections.
I have previously done a theater performance called Rulle which is about everyday life in wheelchair. It is about prejudices and also the experiences as a relative. My mother became spinal cord injured when I was six years old, so much of that performance is based on our own experiences and reflections.
Now I have started a project with the Spinalis Foundation to develop my performance Rulle into a film. I will start my research with a more solid interview material where I want to immerse myself in everything that has to do with spinal cord injury, paralysis, wheelchairs, relatives’ perspectives, prejudices and experiences.
The project will be in progress from the autumn of 2020 and six months ahead.
Congress of the Nordic Spinal Cord Society
Welcome to Stockholm and NoSCoS 2022!
Due to the Corona pandemic the NoSCoS meeting will be postponed until 2022.
A new date will be announced soon.
There are many reasons why a more distinct approach to health information on the topics of healthy foods, weight management and overweight prevention in SCI rehabilitation is needed. The maintenance of overall health, mobility and function and avoidance of pressure ulcers and constipation are some.
“Food, weight and health for people with spinal cord injury”
This brochure – the original Swedish version entitled “Mat, vikt och hälsa för dig med ryggmärgsskada – answers the questions:
- Why do I gain weight even though I eat so little?
- How much do I burn?
- What should I eat to stay healthy?
- How should I eat to avoid constipation?
The brochure is written by Anna-Carin Lagerström in cooperation with the founding members of NutriNord_SCI – a Nordic initiative on patient education on nutrition for people with Spinal Cord Injury. It has been produced by Spinalis Foundation and made available for translation for free to other languages.
For download the pdf-brochures please visit the webpage, Böcker & Broschyrer
The newly made editions in other languages are often a result from cooperations between local clinicians, patient organizations and industry.
Here is a selection of organizations that we have collaborated with:
- The Croatian Paraplegic and Tetraplegic Alliance, www.hupt.hr
- The Slovenian Paraplegic Association, www.zveza-paraplegikov.si
- The Danish Spinal Cord Injuries Association, www.ryk.dk
- The Finnish Association of Spinal Cord Injured Akson, www.aksonry.fi,
- The Norwegian Spinal Cord Injuries Association, www.lars.no
- Sjálfsbjörg, The national federation of physically disabled people in Iceland, www.sjalfsbjorg.is
- The Dutch Spinal Cord Injuries Association, www.dwarslaesie.nl
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