Friday, December 18, 2020

SOOTHE webinar: Learning about mental health from people with intellectual disabilities


This morning I attended the SOOTHE webinar Learning about mental health & well-being from people with intellectual disabilities. The SOOTHE project is working on mental health in people with intellectual disabilities, with the aim of developing an international community of practice. The webinar was bilingual, with some presenters speaking in Spanish but presenting slides in English. I found this quite refreshing, given usual Anglophone hegemony at events/in science globally.  

A key output of SOOTHE has been its E-quilt: an artistic means for expressing understanding of mental health. The quilt is still accepting submissions at this link. On the broader point of art, Professor Wolter Paans highlighted how artwork by people with ID can be included in an exhibition with an entry fee, underscoring the social value of the artwork.

Research in understanding mental health with people with ID was discussed. Some people with ID had quite biological understandings of mental health, even though they linked challenges to mental health with negative experiences in the past (feelings of rejection was often a theme, as well as not feeling heard/understood). There was a bidirectional effect; it seemed that participants not only gave their own viewpoint, but participation in the project broadened the participants' own understanding of mental health.

Beyond understanding mental health itself, the session went on to discuss innovations and ways of improving mental health. Among ideas discussed were relaxation/mindfulness workshops, musical spaces, use of technology, spaces to reduce stimuli, getting professional support to talk about difficult emotions, and enjoying meaningful activities in company of others. Social interactions as well as faith/religion were highlighted as helping to foster a sense of connectedness. Unsurprisingly, COVID-19 cropped up, with negative emotional impact of lockdown restrictions.

Pablo Alvarez discussed a Learnovate approach: going from ideas to implementable solutions, using storyboards to workshop how ideas might be implemented (e.g. physical activity, social interactions, music activities). The project involved working though how to make music available and accessible online, and how to share it. The team developed a prototype app, then had a Q & A session to feedback on user experience with the app, which can be used to create agenda for daily activities. When I say "team", it should be noted that there was a consistent focus on co-creation with people who will be using app. 

In a final discussion, one panelist sounded an optimistic note of how people are increasingly understanding that we're all on a continuum of mental health. COVID-19 was described as a natural experiment no one asked for, meaning that people in general have no choice but to use technology if they wish to communicate with others. The participation of people with ID in the process was highlighted, so there's an ongoing need for the information generated by the project to be available in an accessible way for people with ID, and that people with ID might be able to recruit others and become mental health advocates.

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Sunday, December 13, 2020

The Impact of COVID-19 on People Ageing with an Intellectual Disability in Ireland


The Irish Longitudinal Study on Ageing (IDS-TILDA) has been studying ageing in people with intellectual disability (ID) for over a decade. Now in its fourth wave, a number of its research activities had to be paused due to the COVID-19 pandemic and associated lockdown. However, the IDS-TILDA team has taken the opportunity to study the impact of COVID-19 on participants in this longitudinal study. To mark the release of the report of the findings of this research, an online launch was held on 3rd December 2020, International Day of Disabled Persons.

Attendees were welcomed by Professor Mary McCarron, Principal Investigator of IDS-TILDA. Minister Anne Rabbitte, TD, Minister of State with Responsibility for Disability, gave a speech highlighting the context and main findings of the study, and praising the work of the IDS-TILDA team, those people with ID who have taken part in the study, and those who have supported them during this pandemic. Minister Rabbitte acknowledged that the pandemic and associated lockdown have been difficult for all of us, but it has often been even more challenging for people with ID, who can be more vulnerable, and often have less autonomy than the general population.

Professor McCarron then presented key findings from the COVID-19 survey. The COVID-19 survey had a response rate of 96% from the IDS-TILDA cohort, meaning this survey was representative of the population with ID in Ireland. A majority of participants were tested for COVID-19, with many being tested multiple times. Of those who did test positive or had symptoms, a clear majority had a plan in place to manage self-isolation. Key sources of stress and anxiety were being unable to do one’s usual activities, not seeing friends/family, loneliness and isolation. At the same time, many participants reported there had been some positive aspects to the lockdown, such as trying new activities or using technology to communicate with relatives and friends. Most importantly, there were no reported deaths due to COVID-19 in the IDS-TILDA population.

Following this summary of the results, broadcaster Olivia O’Leary led a panel discussion with a variety of stakeholders, exploring different perspectives on the pandemic and lockdown. Participants on the panel highlighting how best practice was implemented for people with ID in Ireland included Professor Sean Kennelly (Consultant Physician in Geriatric and Stroke Medicine, Tallaght University Hospital), Dr Alison Hartnett (Acting CEO, National Federation of Voluntary Service Providers), Dr Kathleen MacLellan (Assistant Secretary, Social Care Division, Department of Health), and Lisa Lavelle (Director of Nursing, Daughters of Charity Disability Support Service). From an international perspective, Professor Chris Hatton (Manchester Metropolitan University) praised the work of services in Ireland in protecting people with ID, and the research of IDS-TILDA, saying he hoped similar research (conducted at a more localised level) in the UK would be published soon. Professor Philip McCallion, Co-Investigator of IDS-TILDA, highlighted the heterogeneity of experiences across the United States, given the size of the country, but drew particular attention to the deep impact of COVID-19 in the North-East of the USA, where he works at Temple University, Pennsylvania. Mei Lin Yap, a PPI contributor and steering committee member with IDS-TILDA, spoke of her lived experience of the lockdown, and of the importance of social contacts during the lockdown.  

Following final comments from Professor McCarron, the launch closed with the original song “We’re in this together” by Sunbeam House Services. The song and its accompanying video, made by the service users, was a great way to finish the launch and underscore the importance of solidarity with each other at this time.    

You can download the report at this link.

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