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Gwent IAS’ trial of Brain in Hand, a digital self-management support system

Actions and outcomes

This case study is about C, an individual who took part in Gwent IAS’ trial of ‘Brain in Hand’ (BiH.) Brain in Hand is ‘a digital self-management support system for people who need help remembering things, making decisions, planning, or managing anxiety’.

 

Key areas and challenges that were identified include:

  • Physical health – specifically around improving sleep, booking health appointments and ordering repeat prescriptions
  • Well-being and self-esteem – factors affecting C’s wellbeing include anxiety, depression, lack of structure/routine and adverse childhood experiences
  • Time and activities – having more of an occupational balance between interests and household chores.

 

 

BiH has improved many areas of C’s life.  In the begining we focused on addressing C’s issues with sleep. BiH proved invaluable in supporting C’s night time routine and improved their executive dysfunction to initiate and complete tasks that formed this routine. I helped C to incorporate sleep hygiene into their BiH and prompts to break away from interests to complete their night time routine in a timely manner. Visual schedules and reminders on BiH also enabled C to take medication and order repeat prescriptions on time.

 

C was able to use BiH to support them in many areas of their life and it was instrumental in helping to establish daily routines. I supported C to break household tasks down into manageable tasks and to schedule these throughout the week. This was beneficial due to a co-morbid diagnosis of Fibromyalgia. C attended the IAS’s ‘Managing Time & Improving Well-being’ course which explores visual schedules in more depth, looks at the concept of ‘Energy Accounting’ and sensory diets. The course and BiH had a positive effect on C’s ‘Well-being’ and ‘Time and Activities’ because they were able to maintain daily chores more effectively which introduced structure, and this in turn improved self-esteem.

 

After seven months of trialling BiH, 1:1 support and attending the IAS course, C felt more positive and started applying for jobs for the first time in sixteen years. C made it to the final interview with a national public organisation and although unsuccessful, C did manage to gain voluntary employment elsewhere helping people in crisis. BiH and support from the IAS has enabled C to gain a balance in life and be more equipped to maintain their health needs, keep on top of household chores, gain meaningful employment and still have time for their interests.

Feedback

“Since using Brain in Hand my sleep has improved significantly and I am now getting an average of 7 hours restful sleep each night, I also use a weighted blanket which contributes to getting good quality sleep”.

 

“My Brain in Hand has enabled me to order my repeat prescription on time and consequently I have not missed any medication”.

 

“Support from the autism service and Brain in Hand has helped me to ‘check in on myself’, I notice that my mood has improved and I value introspection which is something that I wouldn’t have been able to do previously”.

 

“Brain in Hand continues to help me keep on top of things in my house and it has helped me to sustain my routines. I am now volunteering a few hours per week for a charity”.

 

“My Brain in Hand has enabled me to balance my interests, relationships, housework and volunteering”.

Lessons Learned

  • A good level of engagement between the BiH user and the person supporting them is important. From experience we found a greater level of engagement from those who had an established, positive relationship with the person supporting them.
  • Ability to think more flexibly is important. Trialling BiH was daunting to some people and several participants had preconceived ideas that BiH would instantly ‘fix’ the things that they needed support with the most. When you combine the rigid thinking patterns associated with autism and any preconceptions a person may have, then it can be difficult to manage a person’s expectations. We found that BiH suited those who were able to think more flexibly, however due to the small numbers of people taking part in the trial we appreciate that this is difficult to substantiate.
  • An adequate ability to use smart phones/tablets is important. One participant took longer to get to grips with the website and app because their digital literacy skills were not on the same level as other participants. This meant greater levels of support which equated to more time and resources.
  • Additional help from an informal support network is important. Whilst some individuals who used BiH were able to use it autonomously, it was clear that others needed the support of family members to be prompted to ‘check in’ with their BiH more regularly. Unfortunately, due to the limited resources, staff caseloads and service commitments, it was a challenge for members of the IAS team to support individuals with their BiH as frequently as they would have liked to.

Information

Health Board:
Aneurin Bevan University Health Board
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