This research will explore older father carers perspectives of caring for a son or daughter with learning disabilities. The aim of this project is to learn more about the experience of fathers who have a son or daughter with learning disabilities and how we can provide better supports and services for them in the future.
I am particularly interested in talking to fathers as mothers tend to be the focus when discussing the impact of caring on families who have a son or daughter with learning disabilities. While it is vital that we find out how to better support mothers, fathers’ role within the family and their experiences of caring are also very important. Despite this, fathers’ voices are rarely included in discussions about how service provision could be improved to meet these families’ needs.
The project focusses on older fathers (aged 60+) as I want to better understand the experiences of fathers who care for their son or daughter with learning disabilities over time. Fathers who are aged 60 and over will be able to talk about their experiences of caring at different times in their lives and how these experiences changed over time.
Fathers who participate in this project will attend an interview which lasts around one hour. I will meet fathers in their homes or at the University of Glasgow, depending on which option is more convenient for them. The interview involves discussing father’s experience of caring for their son or daughter with learning disabilities. We will discuss topics such as caring during their child’s early years, as they grew up, and more recently. We will talk about how the father’s relationship with their child and their caregiving role has changed over time, and how caring has impacted them.
If you think that you, or someone you know, would be interested in taking part in this project then please contact me at k.dunn.1@research.gla.ac.uk to find out more.
Why does Talking Mats work so well with children and adults with Down syndrome?
We have a great bit of video footage of Keir, a boy with Down’s syndrome, aged 9 years. He is using Talking Mats to talk about his life. Although Keir’s expressive speech is understood by his immediate family it can be harder for unfamiliar people to follow. Keir was able to communicate very clearly using his Talking Mat about what was going well and not so well. He used Makaton and key words to elaborate on some of his responses.Below is Keir’s Talking Mat. It looks like it would be good to do a submat on school.
We started to think about why Talking Mats can be such a great support for people with Down syndrome.
Here are our top ten reasons !
- In Down syndrome visuo-spatial processing is often viewed as a strength. Talking Mats uses a visual approach to communication.
- Receptive language skills are often better than expressive language skills. Talking Mat allows a thinker to express themselves visually talking the pressure off expressive speech.
- Vocabulary skills are often regarded as a strength and the Talking Mats framework relies on conceptual understanding.
- Talking Mats allows for extra processing time and space for the thinker to place the image on the mat. Reviewing the mat helps with auditory memory problems.
- The interviewer can then use the mat for conversation recasting (modelling a complete sentence) – so what you told me is……” You love going swimming because you like jumping in the water”
- Talking Mats allows you to explore topics that are of interest to the child or adult as well as topics that are functionally relevant.
- The Talking Mats images have words. A whole word approach can help literacy development. Symbols and words can also prompt speech production.
- Open questions are used which help to facilitate expression.
- Talking Mats can be used in lots of different settings: at home, in school and in the community.
- A Talking Mat conversation is FUN and supports relationship building and social closeness.
We know that every person with Down’s syndrome is a unique individual and we want to support them to further their communication, develop their interests, and become as independent as possible. Talking Mats is a great tool – why not give it a go. There’s lots more information on resources and training on www.talkingmats.com.
Self-management for people with long term conditions (LTC) is now a key government strategy to encourage people to take responsibility for their own health, behaviour and well-being. Talking Mats received funding from The Health and Social Care Alliance Scotland to look how using the Digital Talking Mats (DTM) can help people with LTCs to manage their health and well-being and to recognise their own strengths and abilities.
The overall aim of our project was to empower people with different long term conditions, to manage their own health and well-being. Through using Digital Talking Mats (DTM) we hoped that participants would be able to have more control over their lives and have improved communication with families and professionals.
There were a total of 28 participants in this project living with one of three different long term health conditions – stroke, dementia and learning disability. Each participant had access to a tablet device and was given a personal DTM licence which gave them access to 13 topics in the Talking Mats Health and Well-being resource. We visited each participant at home and taught them how to use it and asked them to complete and send us at least 1 digital mat per week for 6 weeks on any topic they wished. The design of the digital Talking Mat allowed them to email their mats directly to the researchers. We visited each participant a second time to discuss on how easy it was to use the digital Talking Mats and their views on their completed mats. We asked those who wished to, to continue sending us completed mats beyond the initial 6 weeks. We visited them again in 6 months to discuss how they were managing.
15 participants completed all 6 mats and 12 participants continued to complete mats over the length of the project. Participants completed 235 digital mats across all 13 topics
There were 3 particularly significant findings
1. At 18 months the participants living with dementia actually felt their well-being had improved, despite dementia being a progressive illness.
2. For the participants living with stroke the results were even more striking as 95% felt things were going well at the end of the project in comparison with 47% at the beginning.
3. At the end of the project the percentage of people with learning disability who felt things were not going well had reduced from 19% to 10%. Furthermore the percentage of people indicating that they were not sure about their views had increased from 27% to 42%. There can be a tendency for people with learning disability when using Talking Mats, to express their views at either end of the mat and to rarely use the mid- point. However being able to use the unsure mid- point is noteworthy as it indicates that the participants in the project realised that they could express their views not only as black or white but could indicate that they were unsure. This awareness opens up the potential for people to express views more thoughtfully with opportunities for further exploration.
Here are three examples of how using the DTM supported people to self-manage situations in their lives. Click on image to enlarge.
As well as helping participants self-manage their long term conditions, an unexpected outcome of this project is that many people found that using the DTM helped them see the positive things in their life and not just the negative. It also highlighted that despite having a long term condition and, for many also a deteriorating one, that things were not getting worse.
Click here for full report including 6,12 and 18 month reports to the funders 20180717 Alliance full report
Click here for the summary report 20180717 Alliance Final Short Report