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.

 

“Remarkable catch up”

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. 

 

Methods:
The study is a retrospective kohort based on journal data.

Results:
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. 

Conclusion:
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.

 

Molly Petersson’s poster at ISCOS 2019.

New exciting collaboration

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.

New film project underway

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.

NoSCoS 2021

Congress of the Nordic Spinal Cord Society

 

Welcome to Stockholm and NoSCoS 2021
The congress will take place at the Radisson Royal Park Hotel (länka) in the scenic and historical settings of Haga National City Park – close to the Haga Royal Palace and with a majestic view of Brunnsviken bay.

The hotel is situated right next to Rehab Station Stockholm / Spinalis and with the Karolinska Institute and Karolinska Hospital only a stone´s throw away.

The surroundings offer a unique nature experience as a compliment to the scientific program. Why not combine the congress with a weekend in Stockholm – the beautiful capital of Scandinavia.

The selected hotel offers an innovative vegetarian menue inspired by both climate sustainability and healthy lifestyle.

 

…………………………………………
Date: 2-4 september 2021
Venue: Radisson Blu Royal Park Hotel, Frösundaviks allé 15 i Stockholm
Homepage: NoSCoS2021
E-mail: noscos2021@spinalis.se
…………………………………………

Food, weight and health for people with spinal cord injury

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:

Spinalis Connect is open

On Monday, March 26, Spinalis Connect was opened in Frösundavik. Here we are creating a meeting place for academy, healthcare and various other businesses and organizations in our field. Spinalis Connect will inspire and create added value for spinal cord injured persons.

More than 60 guests participated at the seminar including Minister for Enterprise and Innovation Mikael Damberg, Karolinska Institute Rector Karin Dahlman Wright, National Life-Science Coordinator Jenni Nordborg and CEO Spinalis Claes Hultling. From Praktikertjänst, the President and CEO, Erik Strand participated, who spoke about the cooperation with Rehab Station Stockholm, which has its premises close by.

See a few pictures below from the opening ceremony

 

Food, weight and health for people with spinal cord injury

Now it’s finally here, the brochure with tips, questions and answers about food and weight for people with spinal cord injury. Read and let yourself be inspired! The brochure is also available in Swedish.

Download pdf brochure here

Download pdf brochure in Swedish language here

Read more about Health and lifestyle at the Spinalis Foundation here

10 expert tips for a smooth digestion

Anna-Carin Lagerström HälsoutvecklingSpinalis is engaged in a long-term cooperation with Wellspect HealthCare. They are writing a blog called The Wellspect blog, which provides you with unedited perspectives, tips and scientific news regarding urinary health and hydrophilic catheters.

Today’s blog post is about common bowel problems. Anna-Carin Lagerström has a Masters of Science and works as a physiotherapist, health educator and nutrition counselor at Spinalis. She meets a lot of people with bladder and bowel problems.

“The most common problems are constipation, abdominal gas and bloating. Reasons for constipation can be a sedentary life style, low fluid intake and medicines used for the primary diagnosis, like painkillers (e.g. morphine and codeine), diuretics (e.g.baclofen) or antidepressants. Some people are incontinent and the bowel tends to have a life of its own, which often creates stress and anxiety surrounding having an accident in public.”

Reed the article here

Expert tips for healthy life with a spinal cord injury

Anna-Carin_o_citron_incl_photo_cred.jpgSpinalis is engaged in a long-term cooperation with Wellspect HealthCare. Wellspect is writing a blog called The Wellspect blog, which provides you with unedited perspectives, tips and scientific news regarding urinary health and hydrophilic catheters.

Today’s blog post is an interview with Spinalis’ health coach Anna-Carin Lagerström. She is a specialist in helping people with spinal cord injuries and talks about the importance of good habits for a life with more energy and quality.

Physical activity and exercise, based on your physical condition, is vital for your health. A life in a wheelchair offers a lot of challenges where you need a strong body.

“It’s like brushing your teeth—it is absolutely essential to do it every day. The same goes for exercise, especially since you miss out of the regular daily exercise that walking people get automatically” – Anna-Carin

 

Read the whole article here