Promoting Physical Activity In The Thalidomide Community
In 2021 a number of beneficiaries took part in a research project run by Loughborough University for the Trust. The aim of the project was to develop an understanding of thalidomide survivors' experiences of physical activity and use this understanding to promote an increase in physical activity motivation and behaviour.
Here we share a summary of the research, the conclusions and what the next steps are.
If you wish to read the final report of the research in full, please visit our research project page.
How the research was done
The project was completed in 3 phases:
- Understanding experiences of physical activity
- Design a practical intervention to support thalidomide survivors in wanting to increase their physical activity and then changing their behaviour to do so
- Running a pilot intervention scheme and evaluating the results
Beneficiaries were involved at every stage of this process to ensure that their experiences were used to design an intervention which would benefit thalidomide survivors.
Phase 1: Understanding experiences of physical activity
The key points from the shared experiences are summarised below and represented by the infographic:
“Why we need it”
- Helps us to manage pain
- Improves our mental health
- Maintains our independence
- Supports weight management
“Why it’s tough”
- It can be painful
- Fitness instructors don’t ‘get’ us
- We fear injury and independence loss
- Inaccessible facilities
“How can we achieve it”
- Pleasure is better than pain
- Some is better than none
- Maintainable rather than unsustainable
- Self-compassion rather than self-criticism
Phase 2: Design a practical intervention to support regular physical activity
The resulting intervention aimed to empower thalidomide survivors to make their own choices regarding physical activity, addressing 3 key elements and using a number of points as guides, shown below:
- What are my goals?
- What is my motivation?
- How can I improve my relationship with physical activity?
- How can we support each other?
- What ideas or experiences can we share?
- What do I need from others to achieve my goals?
- How do I find the right people to help me?
- Where can I access this information?
Guide points for physical activity
- All movement counts
- Be kind during setbacks
- That does not hurt
- At home if you prefer
- With others if you can
- Do something fun
Phase 3: Running a pilot intervention scheme and evaluating the results
The aim of this phase was to test the pilot intervention with beneficiaries and evaluate it with follow-up interviews, assessing specific criteria post intervention.
The beneficiaries taking part all identified as inactive and/or struggling to make physical activity a regular part of their lives.
Following the 3 key elements listed above, the participants were offered support:
Mindset - Individual support sessions with the lead researcher to help establish goals and strategies to stay motivated.
Social - Matched with a 'virtual' physical activity buddy who they committed to 'meeting' once a week to share experiences and information.
Knowledge - Resources were made available throughout the intervention to help find the right people and opportunities for getting active. Also to empower the participants to make positive choices regarding physical activity in the long term.
Evaluating the results
Measures were taken pre-intervention, immediately post-intervention and 2 months after intervention:
- Self-reported physical activity
- Physical activity self-confidence
- Mental health
In addition interviews were undertaken with each of the participants, following an interview guide so that everyone answered the same questions, exploring their personal experience of taking part.
The beneficiaries reported positive experiences of taking part in the intervention. In particular they valued the mindset support in establishing goals and enjoyed the 'buddy' system of the social component. The knowledge element allowed them to explore a range physical activity options to find something that suited their requirements.
In summary, the research showed that the thalidomide community are receptive to a programme to promote physical activity.
The next steps
Due to the success of the research project the Trust are currently developing a Physical Activity Champion scheme to encourage beneficiaries to become more physical active, improving their health and wellbeing.
Details of the scheme will soon be available from Annabelle Blackham. If you wish to register your interest now please contact the Trust office on 01480 474074 or by email.