In response to ‘“Now that I'm connected this isn't social isolation, this is engaging with people”: Staying connected during the COVID-19 pandemic’ (Natasha A. Spassiani, Mojca Becaj, Clare Miller, Andrew Hiddleston, Aaron Hume, Stephan Tait)

IF 1.2 4区 医学 Q3 EDUCATION, SPECIAL British Journal of Learning Disabilities Pub Date : 2023-01-05 DOI:10.1111/bld.12515
Nathaniel Lawford, Danielle Garratt, Noelle McCormack
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She then got asked to help with ‘50 Years of speaking up in England—Towards an important history’ (Walmsley, Davies &amp; Garratt, 2022). Through Speak Out Danielle also worked with Noelle, on a project called ‘Covid Stories from the learning disability community’, where she continued to be able to interview and capture people's stories and video edit. As a result of doing this project an opportunity come up to write this response. Danielle and Noelle both wanted to work on it and Danielle thought that Nathaniel would make a great third person to help us create a response to our chosen article.</p><p>Nathaniel Lawford is the Inclusion and Projects Director of Grace Eyre, as well as a member of Brighton and Hove Speak Out's ‘Being heard in Government’ group. Nathaniel is deeply passionate about understanding and supporting the voices of humanity in the many diverse forms that exist, and is currently focused through work and volunteering on the inclusion and ownership of persons with learning disabilities and/or Autism. Nathaniel also has Autism as well as active PTSD. Nathaniel found the article most insightful and inspiring, in parts speaking to his lived experience and understanding gained from others, as well as challenging assumptions, especially around the formation of relationships through digital inclusion. A massive thank you to all involved in the research of the article.</p><p>Noelle McCormack is a visiting research fellow and member of the Social History of Learning Disability research group based at the Open University. Her interests include life story work and creative research methods. She has recently worked with Brighton and Hove Speak Out, on a project called ‘Covid Stories from the learning disability community’ which recorded experiences of local people during the pandemic.</p><p>We met three times to discuss our thoughts about the article. At our first meeting we had a read through and were each drawn to different parts of the research. Danielle wanted to respond to leadership and digital inclusion, Nathaniel was interested in aspects of relationships and online safety, and Noelle wanted to find out more about the nuts and bolts of the research methods. We wrote up and emailed each other our first drafts. At our second meeting we read our responses to each other. While each of us was reading aloud we noticed changes we wanted to make, went away and redrafted. At our third meeting we revised our work again and agreed which questions we wanted to prioritise. We sent our combined response to Jan Walmsley and Liz Tilley for them to forward to the authors in advance of our online meeting with them. A Zoom meeting was arranged with the authors, Natasha Spassiani, Mojca Becaj, Aaron Hume and Stephan Tait, where we discussed their answers to our questions. In our article below, we begin each section with a quote from the original paper, followed by our question to the authors, and then the discussion that followed in our Zoom meeting.</p><p>At the first look at this paper, Danielle thought it was easy to understand. Danielle works with people who have a learning disability and knows how hard the pandemic was for them. She expected that the article would have some information to do with how the organisation helped people who are digitally isolated as well as digitally included. Speak Out set up a helpline and rang people weekly for a catch up to see how they were doing. Danielle enjoyed reading about how the grassroots disability organisation let people with intellectual/developmental disabilities have a leadership role and were running sessions. Her questions to the authors are about how they got people with intellectual/developmental disabilities to become active leaders. Danielle focuses her bit of the response on the key point of ‘since moving online more adults with intellectual/developmental disabilities took on active leadership roles and felt that the organisation became a community’. When reading this section for the first time it was a very positive and uplifting section but there were some things that struck her about it.</p><p>‘Seeing how well the organisation adapted and was able to keep providing services gave members a sense of shared pride because they had an active role in the organisation's success<i>’</i>.</p><p><b>Question: Could you explain more about the active roles what members had?</b></p><p>Aaron told us that the organisation is member-led and that they worked side-by-side to plan events that they then hosted and led. They put new ideas for events to the members and then put them into practice, for example, a ‘Murder Mystery<i>’</i> event. For this event Aaron worked with another member to plot, write and act out the event, which was ‘interactive, fun and enjoyable’.</p><p>‘Within our study, 30 members with intellectual/developmental disabilities created and led all the online Facebook events.’</p><p><b>Question: How much support did the members have to lead the online Facebook events?</b></p><p>Stephan said that members were supported in a variety of ways including coaching, mentoring, a tutorial library, and messenger calls. The organisation's ambassadors and coordinators worked with members to prepare them for how to lead and join online events. They saw a growing confidence in members and less support was required over time. They used a ‘trial and error<i>’</i> approach. The first time someone was leading an event they had support from ambassadors, which gave them confidence. Everyone was encouraged and supported to try. Stephan found that when he taught one member, they went on to teach another member, which led to a snowball effect. He told us that the only failure ‘was not trying at all, everyone was encouraged to try, and everyone understood that it was okay to fail<i>’</i>. There was a co-ordinator present at every meeting and event.</p><p>‘The organisation fostered opportunities and created a platform that allowed for ideas to be brainstormed and developed as a group, where members felt inspired to contribute to content development.’</p><p><b>Question: What platform was there for members to put their ideas down and brainstorm? Was it hard to teach them how to use it?</b></p><p>Aaron told us that they mostly worked using Zoom for meetings and private Facebook groups for members to post information and have live events. Zoom was offered by the organisation, but Facebook messenger was for members to keep in touch and create content for the organisation. They created a timetable of when events would take place at their weekly get together, a 1-h meeting called ‘Monday Magic<i>’</i>, when ideas were floated, and members volunteered to host.</p><p>‘Our study findings support past research and demonstrates how effective disability organisations can be in educating and supporting people with intellectual/developmental disabilities in staying digitally included.’</p><p><b>Question: Can this be explained more as teaching people to use the internet is hard and if they do not have the internet then how do you teach them?</b></p><p>We heard from Mocja that it was never the organisation's intention to teach people about technology, this was a by-product of trying to keep people connected during the pandemic. Sixty per cent of the organisation's staff team are people with lived experience. Stephan had made a series of online tutorials and the organisation's ambassadors supported people until they were confident.</p><p>Overall, Danielle thought the discussion section of this article has a lot in it. One of the points that she would like to have some more information on is in the section saying, ‘Our study found that adults with intellectual/developmental disabilities were able to meaningfully participate online and felt socially connected through their computer screen.<i>’</i></p><p><b>Question: Danielle would like to know how many people didn't interact online</b>.</p><p>Mojca told us that at end of the 12 months, 70 per cent of the membership did not engage online, which they were very concerned about. However, it had been one of the most successful years in their history in terms of participation and engagement. The focus of their paper had been about the 30 per cent who did join in with activities online, to tell an upbeat story of record numbers of participation.</p><p>Danielle found the answers to her questions useful and interesting. She was pleased to find out more about how the organisation worked together to encourage everyone to be involved in the planning and hosting of online Facebook events and that everyone was encouraged and supported to participate. She was impressed by the content of the online tutorials and will use them herself in future work.</p><p>The Section 2a titled ‘Increased opportunity to access events<i>’</i> Nathaniel found a most surprising read, especially given the statement that ‘adults with intellectual/developmental disabilities are able to build positive relationships online … that can have the same benefits as seeing people in person’. This challenged his understanding of the formation of relationships. For while Nathaniel has witnessed many positive relationships being formed through digital inclusion, he always thought that the physical nature of interaction could never be replicated into the digital world. And so, Nathaniel must thank this article for challenging his assumptions and motivating him to revise his thinking. A query Nathaniel found however, was while reading this section and coming across the sentence ‘they are able to find out which other people have similar interests and build true and meaningful relationships’.</p><p><b>Question: The question the above quote inspired is: for the relationships that were created during lockdown, did persons experience friction or anxieties leading up to the end of lockdown when some persons would have returned to in person spaces and others stayed online?</b></p><p>We heard from Aaron that they found significant relationships were established by meeting online. For Aaron it was better because it was more accessible. He told us that the organisation is great because it does both online and in person events so he can choose which events he wants to go along too.</p><p>Nathaniel found the focus on persons given autonomy and respect to support or let go of their relationships as they saw fit very much in keeping with respecting the individual's right to decide the shape of their own lives, including the individuals within it. This is in keeping both with the ethos of Grace Eyre and Speak Out as well as other organisations involved in the learning disability community. Also, the choice of online and in person provision means different platforms remain open so that wider accessibility and opportunity to build and maintain relationships can continue which he found very encouraging.</p><p>Nathaniel is aware the hybrid model is essential from the perspective of including the group, but it does pose the question of how easily or how many relationships that were founded during lockdown, when digital meetings were the only way, have fared in the time of hybrid inclusion especially for persons who find themselves preferring different environments when given the choice? Following from above conversation the article explores in 2b ‘Increased sense of safety meant people felt more able to take chances/risks<i>’</i>. Nathaniel found this a most enlightening and inspiring read. He found while reading certain points such as familiarity of one's home environment removing anxiety of new spaces and the removal of the anxieties and distress that can go with transport, spoke true to his own experiences during and shortly after experiencing significant trauma. But given he was able to overcome these barriers, and not wishing to dwell upon those difficult memories, he also had lost the perspective of those who continue to face these barriers as expressed in the article an online meeting can circumvent these challenges, and thus foster a sense of safety. Furthermore, the opportunity for persons to engage in meaningful discussions on their own terms, without direct parental involvement, is a significant step forward and has been a key discussion point in the ‘Being heard in Government<i>’</i> group he attends that Speak Out facilitates. And he will share this insight with the group in the hope that they can find ways of implementing this approach. This would benefit fostering ownership both between persons with lived experience who are meeting each other and encourage local government to directly engage with the person/s of lived experience where possible directly.</p><p>Having said the above, it is also true that through work and volunteering Nathaniel has heard many concerns over internet safety, especially in cases where groups are open to new members joining during the pandemic—‘since membership to the organisation is open to any adult with a disability<i>’</i>—and these new attendees would not be known by the pre-existing group. The difficulty comes when this results in harmful behaviour from the new attendee which could have been screened out more effectively through the process and structures that often accompany in-person groups. Or conversely situations where the new member feels excluded having not had the shared experience of before lockdown with other members of the group.</p><p><b>Question: Thinking about these scenarios that Nathaniel has heard lived experience of, he was wondering during the online events how the organisations that were involved in the study ensured the inclusion of new members during Covid. And what processes were put into place to ensure the safety of the pre-existing group would not be threatened?</b></p><p>Stephan told us that existing members welcomed new people with open arms, like a ‘big cuddly blanket<i>’</i> to join the community, reflecting the ethos of the organisation. People feeling threatened couldn't be further from the truth. This was seen in the ‘chat<i>’</i> where all the messages to new members were warm and welcoming. Mojca added that co-ordinators cross-checked every member, the groups were open to registered members only, and that members signed up to a community agreement to ensure meetings were a safe space for all.</p><p>Nathaniel initially found the answer to the question seemed to deviate from the question he had in mind because the answer focused on the mindset of the group rather than the questions of health and safety which he had envisaged the question leading to. That being said, it was really good to hear that everyone is welcome, and that courage to embrace new members links very much to the capabilities and strengths of the community to continue to create and grow relationships in a time of change. Also, when clarifying his question, he did find that the organisation was very much aware of and had taken actions (such as through the existence of closed groups) to ensure a level of safety within online groups.</p><p>Turning from Digital Inclusion from the standpoint of safety to digital inclusion from the standpoint of the ease of access on digital platforms, in 3b the article states ‘Active role modelling may lead to more people feeling confident to take leadership opportunities.’ The article goes on to cover the sense of ownership and problem-solving capabilities within not-for-profit organisations. In addition, the article states ‘Our study findings support past research and demonstrates how effective disability organisations can be in educating and supporting people with intellectual/developmental disabilities in staying digitally included<i>’</i>.</p><p><b>Question: Nathaniel was wondering based upon this if you could expand upon what digital platforms worked well for engagement and the growing opportunity of ownership within these events and meetings, and what digital platforms proved the least adaptable and accessible?</b></p><p>Mocja said that Zoom and Facebook worked very well and that the organisation held training sessions to support people to use the online platforms. The membership found Zoom more accessible than other online meeting platforms.</p><p>Nathaniel found it encouraging to hear that Zoom and Facebook were accessible platforms, as these were also the platforms of choice for the friendship group which Grace Eyre supports as well as for meeting purposes (on the Zoom side) for Trustees with lived experience. He wishes he had more time in the session to ask exactly what aspects made them more accessible, but that the general truth holds across organisations, and indeed countries is, he thinks, most promising. Also, it was wonderful to hear about the collective support, as well as training provided on how to use Zoom. ‘We become experts together’, seemed a very fitting and apt statement to reply to this answer and indeed holds true for the answers throughout. Nathaniel would like to thank the individuals for giving their time for a wonderful session, and hopes the community referenced in both the article and the feedback session continue to flourish.</p><p>The paper is clearly written in accessible language and has an impressive research brief. Noelle was struck by the responsiveness of the grassroots organisation—they clearly know their membership well—and the speed at which they got going with their enquiry, getting the first questionnaire out to participants in June 2020. There is a lot to like about the inclusiveness of the methods, notably the co-analysis of the data and the co-writing of parts of the paper and that members of the grassroots organisation were active participants in the research team. Noelle's questions to the authors reflect her interest in inclusive research methods and are about furthering her understanding of levels of engagement and participation.</p><p>‘self-advocates contributed to analysing the data’</p><p>‘[self-advocates] contributed to writing the introduction, results and discussion section’</p><p><b>Question: How did you manage the practicalities of collaborative analysis and writing?</b></p><p>Natasha told us that the research was true collaboration between community and university. They adopted an accessible and inclusive approach to ensure they met the needs of all researchers involved in the project. The analysis and writing took place in a series of Zoom meetings in a safe environment where they could pause at any point if someone wasn't sure what was happening. The research data was pulled together and what was useful to answer their research question was presented in an accessible format that they were able to talk through, repeatedly asking, ‘Does this make sense?<i>’</i> The writing took place over a period of 18 months.</p><p><b>Question: What advice would you give to others?</b></p><p>Aaron said their advice is to have lots of team meetings and set meeting agendas to look at one section at a time, breaking it down into manageable tasks. This allowed the team to focus on each section of the paper. For example, they had various meetings that focused on just writing the results section of the paper. During each meeting they met through Zoom, and this allowed them to screen share the working document so they could all read it together to make connections and corrections. This ensured everyone had a fair say and they could include a meaningful contribution from each member of the team. It was very important to let people with lived experience be part of the research process and be listed as co-authors of the paper to ensure they were recognised for their contributions.</p><p>‘For this study, 30 members with intellectual and developmental disabilities participated and were not hand selected. [] Members with more complex needs were not represented in this study.<i>’</i></p><p><b>Question: How were the participants recruited?</b></p><p>We heard from Aaron and Mocja that participants were recruited from the membership who attended Zoom events. The creation of a weekly 1-h meeting, ‘Monday Magic<i>’</i>, was their response to the Covid-19 pandemic. Members of the organisation were able to take active roles in a self-determined way. A core group of around 30 members came up with some ‘really cool stuff<i>’</i> every week. And at the end of 12 months this core group had created 415 events (including Facebook live, seated exercise, Zoom events). What they wanted to do as their initial response to the pandemic was to ask if they were still meeting their organisation's objectives of increasing self-determination, reducing isolation and loneliness, and increasing emotional awareness and resilience. Evidence that they continued to reach their objectives through their online engagement was found in members questionnaire responses.</p><p><b>Question: Were any/all the researchers also participants?</b></p><p>Stephan said that three of the co-authors were also participants. The work was open to all members, and the people who co-authored this paper were those who had ‘stepped forward<i>’</i>.</p><p><b>Question: Why were people with more complex needs not represented?</b></p><p>Stephan told us that at the time only a fraction of the membership was able to access the online offering. An audit showed that people with complex needs were facing multiple barriers to online access, such as staffing support and (maybe) staff attitudes that online events were not for the individual. No one was excluded on the basis of their support needs.</p><p><b>Question: How many online activities were recorded in field notes? Were field notes taken at different activities and via different platforms?</b> It would be useful to know given the high number of events taking place each week and the conclusions drawn from the fieldnotes.</p><p>Mocja reported that all the meetings were recorded in the field notes and demographics were also noted. Extracts from the notes informed the analysis for their article. In total this included 223 Zoom meetings plus 415 member-led Facebook events in a 12-month period.</p><p><b>Question: How did you assess or measure</b> <i><b>‘connection and empowerment</b>’</i><b>?</b></p><p>We heard from Mojca that connection and empowerment was evident in the way that the organisation's members worked together. Online events were developed and organised through peer-to-peer support. Stephan, get2gether's digital ambassador had developed a series of online tutorials. The online events were member-led. People made friends. There was a sense of ‘we are all in this together and we will get through this<i>’</i>.</p><p>Noelle appreciated finding out more about the processes of the collaborative research. Multiple online meetings that presented material in accessible formats clearly resulted in what Natasha described as a ‘true collaboration’. Noelle felt that the equality of the team's warm and enthusiastic working relationships was evident when they met together and was reflected in the way that individual responses to questions were presented.</p><p>Danielle, Nathaniel and Noelle would like to extend thanks to the British Journal of Learning Disabilities for inviting them to write this In Response piece, and to the authors of ‘Now that I'm connected this isn't social isolation, this is engaging with people’: Staying connected during the COVID-19 pandemic for their enthusiastic, thoughtful and inspiring answers to their questions. 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引用次数: 0

Abstract

Danielle Garratt is a Learning Disability Voices Network Project worker for Brighton and Hove Speak Out. Speak Out is an independent charity that makes sure people with learning disabilities can speak up and take action about things that matter to them. During the pandemic Danielle discovered a big interest in research. She started up an interview series on YouTube called ‘Speak Out with Danielle’. She interviewed, filmed and edited the recordings by herself. She interviewed many different people including those who have a learning disability and the head of Learning Disability England. She then got asked to help with ‘50 Years of speaking up in England—Towards an important history’ (Walmsley, Davies & Garratt, 2022). Through Speak Out Danielle also worked with Noelle, on a project called ‘Covid Stories from the learning disability community’, where she continued to be able to interview and capture people's stories and video edit. As a result of doing this project an opportunity come up to write this response. Danielle and Noelle both wanted to work on it and Danielle thought that Nathaniel would make a great third person to help us create a response to our chosen article.

Nathaniel Lawford is the Inclusion and Projects Director of Grace Eyre, as well as a member of Brighton and Hove Speak Out's ‘Being heard in Government’ group. Nathaniel is deeply passionate about understanding and supporting the voices of humanity in the many diverse forms that exist, and is currently focused through work and volunteering on the inclusion and ownership of persons with learning disabilities and/or Autism. Nathaniel also has Autism as well as active PTSD. Nathaniel found the article most insightful and inspiring, in parts speaking to his lived experience and understanding gained from others, as well as challenging assumptions, especially around the formation of relationships through digital inclusion. A massive thank you to all involved in the research of the article.

Noelle McCormack is a visiting research fellow and member of the Social History of Learning Disability research group based at the Open University. Her interests include life story work and creative research methods. She has recently worked with Brighton and Hove Speak Out, on a project called ‘Covid Stories from the learning disability community’ which recorded experiences of local people during the pandemic.

We met three times to discuss our thoughts about the article. At our first meeting we had a read through and were each drawn to different parts of the research. Danielle wanted to respond to leadership and digital inclusion, Nathaniel was interested in aspects of relationships and online safety, and Noelle wanted to find out more about the nuts and bolts of the research methods. We wrote up and emailed each other our first drafts. At our second meeting we read our responses to each other. While each of us was reading aloud we noticed changes we wanted to make, went away and redrafted. At our third meeting we revised our work again and agreed which questions we wanted to prioritise. We sent our combined response to Jan Walmsley and Liz Tilley for them to forward to the authors in advance of our online meeting with them. A Zoom meeting was arranged with the authors, Natasha Spassiani, Mojca Becaj, Aaron Hume and Stephan Tait, where we discussed their answers to our questions. In our article below, we begin each section with a quote from the original paper, followed by our question to the authors, and then the discussion that followed in our Zoom meeting.

At the first look at this paper, Danielle thought it was easy to understand. Danielle works with people who have a learning disability and knows how hard the pandemic was for them. She expected that the article would have some information to do with how the organisation helped people who are digitally isolated as well as digitally included. Speak Out set up a helpline and rang people weekly for a catch up to see how they were doing. Danielle enjoyed reading about how the grassroots disability organisation let people with intellectual/developmental disabilities have a leadership role and were running sessions. Her questions to the authors are about how they got people with intellectual/developmental disabilities to become active leaders. Danielle focuses her bit of the response on the key point of ‘since moving online more adults with intellectual/developmental disabilities took on active leadership roles and felt that the organisation became a community’. When reading this section for the first time it was a very positive and uplifting section but there were some things that struck her about it.

‘Seeing how well the organisation adapted and was able to keep providing services gave members a sense of shared pride because they had an active role in the organisation's success.

Question: Could you explain more about the active roles what members had?

Aaron told us that the organisation is member-led and that they worked side-by-side to plan events that they then hosted and led. They put new ideas for events to the members and then put them into practice, for example, a ‘Murder Mystery event. For this event Aaron worked with another member to plot, write and act out the event, which was ‘interactive, fun and enjoyable’.

‘Within our study, 30 members with intellectual/developmental disabilities created and led all the online Facebook events.’

Question: How much support did the members have to lead the online Facebook events?

Stephan said that members were supported in a variety of ways including coaching, mentoring, a tutorial library, and messenger calls. The organisation's ambassadors and coordinators worked with members to prepare them for how to lead and join online events. They saw a growing confidence in members and less support was required over time. They used a ‘trial and error approach. The first time someone was leading an event they had support from ambassadors, which gave them confidence. Everyone was encouraged and supported to try. Stephan found that when he taught one member, they went on to teach another member, which led to a snowball effect. He told us that the only failure ‘was not trying at all, everyone was encouraged to try, and everyone understood that it was okay to fail. There was a co-ordinator present at every meeting and event.

‘The organisation fostered opportunities and created a platform that allowed for ideas to be brainstormed and developed as a group, where members felt inspired to contribute to content development.’

Question: What platform was there for members to put their ideas down and brainstorm? Was it hard to teach them how to use it?

Aaron told us that they mostly worked using Zoom for meetings and private Facebook groups for members to post information and have live events. Zoom was offered by the organisation, but Facebook messenger was for members to keep in touch and create content for the organisation. They created a timetable of when events would take place at their weekly get together, a 1-h meeting called ‘Monday Magic, when ideas were floated, and members volunteered to host.

‘Our study findings support past research and demonstrates how effective disability organisations can be in educating and supporting people with intellectual/developmental disabilities in staying digitally included.’

Question: Can this be explained more as teaching people to use the internet is hard and if they do not have the internet then how do you teach them?

We heard from Mocja that it was never the organisation's intention to teach people about technology, this was a by-product of trying to keep people connected during the pandemic. Sixty per cent of the organisation's staff team are people with lived experience. Stephan had made a series of online tutorials and the organisation's ambassadors supported people until they were confident.

Overall, Danielle thought the discussion section of this article has a lot in it. One of the points that she would like to have some more information on is in the section saying, ‘Our study found that adults with intellectual/developmental disabilities were able to meaningfully participate online and felt socially connected through their computer screen.

Question: Danielle would like to know how many people didn't interact online.

Mojca told us that at end of the 12 months, 70 per cent of the membership did not engage online, which they were very concerned about. However, it had been one of the most successful years in their history in terms of participation and engagement. The focus of their paper had been about the 30 per cent who did join in with activities online, to tell an upbeat story of record numbers of participation.

Danielle found the answers to her questions useful and interesting. She was pleased to find out more about how the organisation worked together to encourage everyone to be involved in the planning and hosting of online Facebook events and that everyone was encouraged and supported to participate. She was impressed by the content of the online tutorials and will use them herself in future work.

The Section 2a titled ‘Increased opportunity to access events Nathaniel found a most surprising read, especially given the statement that ‘adults with intellectual/developmental disabilities are able to build positive relationships online … that can have the same benefits as seeing people in person’. This challenged his understanding of the formation of relationships. For while Nathaniel has witnessed many positive relationships being formed through digital inclusion, he always thought that the physical nature of interaction could never be replicated into the digital world. And so, Nathaniel must thank this article for challenging his assumptions and motivating him to revise his thinking. A query Nathaniel found however, was while reading this section and coming across the sentence ‘they are able to find out which other people have similar interests and build true and meaningful relationships’.

Question: The question the above quote inspired is: for the relationships that were created during lockdown, did persons experience friction or anxieties leading up to the end of lockdown when some persons would have returned to in person spaces and others stayed online?

We heard from Aaron that they found significant relationships were established by meeting online. For Aaron it was better because it was more accessible. He told us that the organisation is great because it does both online and in person events so he can choose which events he wants to go along too.

Nathaniel found the focus on persons given autonomy and respect to support or let go of their relationships as they saw fit very much in keeping with respecting the individual's right to decide the shape of their own lives, including the individuals within it. This is in keeping both with the ethos of Grace Eyre and Speak Out as well as other organisations involved in the learning disability community. Also, the choice of online and in person provision means different platforms remain open so that wider accessibility and opportunity to build and maintain relationships can continue which he found very encouraging.

Nathaniel is aware the hybrid model is essential from the perspective of including the group, but it does pose the question of how easily or how many relationships that were founded during lockdown, when digital meetings were the only way, have fared in the time of hybrid inclusion especially for persons who find themselves preferring different environments when given the choice? Following from above conversation the article explores in 2b ‘Increased sense of safety meant people felt more able to take chances/risks. Nathaniel found this a most enlightening and inspiring read. He found while reading certain points such as familiarity of one's home environment removing anxiety of new spaces and the removal of the anxieties and distress that can go with transport, spoke true to his own experiences during and shortly after experiencing significant trauma. But given he was able to overcome these barriers, and not wishing to dwell upon those difficult memories, he also had lost the perspective of those who continue to face these barriers as expressed in the article an online meeting can circumvent these challenges, and thus foster a sense of safety. Furthermore, the opportunity for persons to engage in meaningful discussions on their own terms, without direct parental involvement, is a significant step forward and has been a key discussion point in the ‘Being heard in Government group he attends that Speak Out facilitates. And he will share this insight with the group in the hope that they can find ways of implementing this approach. This would benefit fostering ownership both between persons with lived experience who are meeting each other and encourage local government to directly engage with the person/s of lived experience where possible directly.

Having said the above, it is also true that through work and volunteering Nathaniel has heard many concerns over internet safety, especially in cases where groups are open to new members joining during the pandemic—‘since membership to the organisation is open to any adult with a disability—and these new attendees would not be known by the pre-existing group. The difficulty comes when this results in harmful behaviour from the new attendee which could have been screened out more effectively through the process and structures that often accompany in-person groups. Or conversely situations where the new member feels excluded having not had the shared experience of before lockdown with other members of the group.

Question: Thinking about these scenarios that Nathaniel has heard lived experience of, he was wondering during the online events how the organisations that were involved in the study ensured the inclusion of new members during Covid. And what processes were put into place to ensure the safety of the pre-existing group would not be threatened?

Stephan told us that existing members welcomed new people with open arms, like a ‘big cuddly blanket to join the community, reflecting the ethos of the organisation. People feeling threatened couldn't be further from the truth. This was seen in the ‘chat where all the messages to new members were warm and welcoming. Mojca added that co-ordinators cross-checked every member, the groups were open to registered members only, and that members signed up to a community agreement to ensure meetings were a safe space for all.

Nathaniel initially found the answer to the question seemed to deviate from the question he had in mind because the answer focused on the mindset of the group rather than the questions of health and safety which he had envisaged the question leading to. That being said, it was really good to hear that everyone is welcome, and that courage to embrace new members links very much to the capabilities and strengths of the community to continue to create and grow relationships in a time of change. Also, when clarifying his question, he did find that the organisation was very much aware of and had taken actions (such as through the existence of closed groups) to ensure a level of safety within online groups.

Turning from Digital Inclusion from the standpoint of safety to digital inclusion from the standpoint of the ease of access on digital platforms, in 3b the article states ‘Active role modelling may lead to more people feeling confident to take leadership opportunities.’ The article goes on to cover the sense of ownership and problem-solving capabilities within not-for-profit organisations. In addition, the article states ‘Our study findings support past research and demonstrates how effective disability organisations can be in educating and supporting people with intellectual/developmental disabilities in staying digitally included.

Question: Nathaniel was wondering based upon this if you could expand upon what digital platforms worked well for engagement and the growing opportunity of ownership within these events and meetings, and what digital platforms proved the least adaptable and accessible?

Mocja said that Zoom and Facebook worked very well and that the organisation held training sessions to support people to use the online platforms. The membership found Zoom more accessible than other online meeting platforms.

Nathaniel found it encouraging to hear that Zoom and Facebook were accessible platforms, as these were also the platforms of choice for the friendship group which Grace Eyre supports as well as for meeting purposes (on the Zoom side) for Trustees with lived experience. He wishes he had more time in the session to ask exactly what aspects made them more accessible, but that the general truth holds across organisations, and indeed countries is, he thinks, most promising. Also, it was wonderful to hear about the collective support, as well as training provided on how to use Zoom. ‘We become experts together’, seemed a very fitting and apt statement to reply to this answer and indeed holds true for the answers throughout. Nathaniel would like to thank the individuals for giving their time for a wonderful session, and hopes the community referenced in both the article and the feedback session continue to flourish.

The paper is clearly written in accessible language and has an impressive research brief. Noelle was struck by the responsiveness of the grassroots organisation—they clearly know their membership well—and the speed at which they got going with their enquiry, getting the first questionnaire out to participants in June 2020. There is a lot to like about the inclusiveness of the methods, notably the co-analysis of the data and the co-writing of parts of the paper and that members of the grassroots organisation were active participants in the research team. Noelle's questions to the authors reflect her interest in inclusive research methods and are about furthering her understanding of levels of engagement and participation.

‘self-advocates contributed to analysing the data’

‘[self-advocates] contributed to writing the introduction, results and discussion section’

Question: How did you manage the practicalities of collaborative analysis and writing?

Natasha told us that the research was true collaboration between community and university. They adopted an accessible and inclusive approach to ensure they met the needs of all researchers involved in the project. The analysis and writing took place in a series of Zoom meetings in a safe environment where they could pause at any point if someone wasn't sure what was happening. The research data was pulled together and what was useful to answer their research question was presented in an accessible format that they were able to talk through, repeatedly asking, ‘Does this make sense? The writing took place over a period of 18 months.

Question: What advice would you give to others?

Aaron said their advice is to have lots of team meetings and set meeting agendas to look at one section at a time, breaking it down into manageable tasks. This allowed the team to focus on each section of the paper. For example, they had various meetings that focused on just writing the results section of the paper. During each meeting they met through Zoom, and this allowed them to screen share the working document so they could all read it together to make connections and corrections. This ensured everyone had a fair say and they could include a meaningful contribution from each member of the team. It was very important to let people with lived experience be part of the research process and be listed as co-authors of the paper to ensure they were recognised for their contributions.

‘For this study, 30 members with intellectual and developmental disabilities participated and were not hand selected. [] Members with more complex needs were not represented in this study.

Question: How were the participants recruited?

We heard from Aaron and Mocja that participants were recruited from the membership who attended Zoom events. The creation of a weekly 1-h meeting, ‘Monday Magic, was their response to the Covid-19 pandemic. Members of the organisation were able to take active roles in a self-determined way. A core group of around 30 members came up with some ‘really cool stuff every week. And at the end of 12 months this core group had created 415 events (including Facebook live, seated exercise, Zoom events). What they wanted to do as their initial response to the pandemic was to ask if they were still meeting their organisation's objectives of increasing self-determination, reducing isolation and loneliness, and increasing emotional awareness and resilience. Evidence that they continued to reach their objectives through their online engagement was found in members questionnaire responses.

Question: Were any/all the researchers also participants?

Stephan said that three of the co-authors were also participants. The work was open to all members, and the people who co-authored this paper were those who had ‘stepped forward.

Question: Why were people with more complex needs not represented?

Stephan told us that at the time only a fraction of the membership was able to access the online offering. An audit showed that people with complex needs were facing multiple barriers to online access, such as staffing support and (maybe) staff attitudes that online events were not for the individual. No one was excluded on the basis of their support needs.

Question: How many online activities were recorded in field notes? Were field notes taken at different activities and via different platforms? It would be useful to know given the high number of events taking place each week and the conclusions drawn from the fieldnotes.

Mocja reported that all the meetings were recorded in the field notes and demographics were also noted. Extracts from the notes informed the analysis for their article. In total this included 223 Zoom meetings plus 415 member-led Facebook events in a 12-month period.

Question: How did you assess or measure ‘connection and empowerment?

We heard from Mojca that connection and empowerment was evident in the way that the organisation's members worked together. Online events were developed and organised through peer-to-peer support. Stephan, get2gether's digital ambassador had developed a series of online tutorials. The online events were member-led. People made friends. There was a sense of ‘we are all in this together and we will get through this.

Noelle appreciated finding out more about the processes of the collaborative research. Multiple online meetings that presented material in accessible formats clearly resulted in what Natasha described as a ‘true collaboration’. Noelle felt that the equality of the team's warm and enthusiastic working relationships was evident when they met together and was reflected in the way that individual responses to questions were presented.

Danielle, Nathaniel and Noelle would like to extend thanks to the British Journal of Learning Disabilities for inviting them to write this In Response piece, and to the authors of ‘Now that I'm connected this isn't social isolation, this is engaging with people’: Staying connected during the COVID-19 pandemic for their enthusiastic, thoughtful and inspiring answers to their questions. They hope to keep in touch and look forward to collaborating in the future.

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然而,Nathaniel发现的一个问题是,在阅读这一部分时,遇到了“他们能够发现哪些其他人有相似的兴趣,并建立真正有意义的关系”这句话。问:上述引语引发的问题是:对于在封锁期间建立的关系,在封锁结束前,一些人会回到个人空间,而另一些人会留在网上,人们是否会经历摩擦或焦虑?我们听亚伦说,他们发现重要的关系是通过在网上见面建立起来的。对亚伦来说,它更好,因为它更容易接近。他告诉我们,这个组织很棒,因为它既提供在线活动,也提供现场活动,所以他可以选择自己想参加的活动。纳撒尼尔发现,把重点放在给予人们自主权和尊重,以支持或放弃他们认为合适的关系上,这与尊重个人决定自己生活形态的权利是一致的,包括生活中的个人。这与Grace Eyre和Speak Out以及其他参与学习障碍社区的组织的精神保持一致。此外,在线和面对面的选择意味着不同的平台仍然是开放的,因此更广泛的可访问性和建立和维持关系的机会可以继续,他发现这非常令人鼓舞。纳撒尼尔意识到,从包容群体的角度来看,混合模式至关重要,但它确实提出了一个问题,即在封闭期间(数字会议是唯一途径)建立的关系,在混合包容时代(特别是对于那些发现自己在有选择的情况下更喜欢不同环境的人)发展得有多容易,或者有多少关系?根据上面的对话,文章在2b中探讨了“安全感的增强意味着人们更有能力冒险”。纳撒尼尔觉得这是一本极具启发性和启发性的读物。他在阅读某些观点时发现,比如熟悉一个人的家庭环境,消除对新空间的焦虑,消除交通带来的焦虑和痛苦,这与他自己在经历重大创伤期间和之后不久的经历是真实的。但考虑到他能够克服这些障碍,并且不希望纠缠于那些艰难的记忆,他也失去了那些继续面对这些障碍的人的视角,正如文章中所表达的那样,在线会议可以绕过这些挑战,从而培养一种安全感。此外,人们有机会在没有父母直接参与的情况下,以自己的方式参与有意义的讨论,这是向前迈出的重要一步,也是他参加的“在政府中被倾听”小组的一个关键讨论点。他将与小组成员分享这一见解,希望他们能找到实施这一方法的方法。这将有利于培养彼此见面的有生活经验的人之间的所有权,并鼓励地方政府在可能的情况下直接与有生活经验的人接触。话虽如此,通过工作和志愿服务,纳撒尼尔也确实听到了许多关于互联网安全的担忧,特别是在疫情期间组织对新成员开放的情况下——“因为该组织的会员资格对任何有残疾的成年人开放”——这些新参与者不会被现有的组织所认识。当这导致新参与者的有害行为时,困难就来了,这些行为本可以通过经常伴随面对面小组的过程和结构更有效地筛选出来。或者相反,新成员因为没有和其他成员分享封锁前的经历而感到被排斥。问:考虑到Nathaniel听到的这些场景的亲身经历,他想知道在在线活动期间,参与研究的组织如何确保新成员在Covid期间被纳入。采取了哪些程序来确保现有群体的安全不会受到威胁?Stephan告诉我们,现有的成员张开双臂欢迎新成员加入社区,就像一个“大毯子”,反映了组织的精神。感觉受到威胁的人离真相再远不过了。这可以从“聊天”中看到,所有给新成员的信息都是热情和欢迎的。Mojca补充说,协调员对每个成员进行了交叉检查,小组只对注册成员开放,成员签署了社区协议,以确保会议对所有人来说都是一个安全的空间。 Nathaniel最初发现这个问题的答案似乎偏离了他心中的问题,因为答案关注的是群体的心态,而不是他所设想的问题所导致的健康和安全问题。话虽如此,听到每个人都受到欢迎真是太好了,这种接纳新成员的勇气与社区在变革时期继续创造和发展关系的能力和优势密切相关。此外,在澄清他的问题时,他确实发现该组织非常清楚并采取了行动(例如通过封闭群组的存在)来确保在线群组内的安全程度。从安全角度的数字包容转向数字平台易于访问的数字包容,文章在3b中指出“积极的角色建模可能会使更多人有信心抓住领导机会。”文章接着讨论了非营利组织的主人翁意识和解决问题的能力。此外,文章指出:“我们的研究结果支持了过去的研究,并证明了残疾人组织在教育和支持智力/发育障碍人士保持数字化融入方面是多么有效。”问题:Nathaniel在此基础上想知道您是否可以详细说明哪些数字平台对这些活动和会议的参与度和所有权的增长机会很有效,以及哪些数字平台被证明是适应性和可访问性最差的?moja说,Zoom和Facebook合作得很好,该组织举办了培训课程,以支持人们使用在线平台。会员们发现Zoom比其他在线会议平台更容易使用。Nathaniel听到Zoom和Facebook是可访问的平台感到鼓舞,因为这些平台也是Grace Eyre支持的友谊小组的选择平台,也是有生活经验的受托人的会议目的(在Zoom方面)。他希望他能在会议上有更多的时间来询问究竟是什么方面让他们更容易接近,但他认为,在所有组织,甚至国家,普遍的真理是最有希望的。此外,听到集体的支持,以及如何使用Zoom提供的培训,这是美妙的。“我们一起成为专家”,似乎是一个非常合适和恰当的回答这个答案,确实适用于所有的答案。Nathaniel要感谢每个人抽出时间参加这个精彩的会议,并希望文章和反馈会议中提到的社区继续蓬勃发展。这篇论文显然是用通俗易懂的语言写的,并且有一个令人印象深刻的研究简介。诺艾尔被草根组织的反应震惊了——他们清楚地了解自己的成员——以及他们进行调查的速度,他们在2020年6月向参与者发出了第一份问卷。这些方法的包容性有很多值得喜欢的地方,尤其是对数据的共同分析和论文部分内容的共同撰写,以及基层组织成员积极参与研究团队。诺艾尔向作者提出的问题反映了她对包容性研究方法的兴趣,并进一步加深了她对参与和参与水平的理解。问题:你是如何管理协作分析和写作的实用性的?娜塔莎告诉我们,这项研究是社区和大学之间真正的合作。他们采用了一种可访问和包容的方法,以确保满足参与该项目的所有研究人员的需求。分析和写作是在一系列Zoom会议中进行的,会议在一个安全的环境中进行,如果有人不确定发生了什么,他们可以在任何时候暂停。研究数据被汇集在一起,并以一种可访问的格式呈现出对回答他们的研究问题有用的内容,他们可以通过这种格式进行讨论,反复询问,“这有意义吗?”这篇文章的写作历时18个月。问题:你会给别人什么建议?亚伦说,他们的建议是召开多次团队会议,并制定会议议程,每次只讨论一个部分,将其分解为可管理的任务。这使得团队能够专注于论文的每个部分。例如,他们举行了各种会议,重点是撰写论文的结果部分。在每次会议期间,他们都通过Zoom进行会面,这使得他们可以屏幕共享工作文件,这样他们就可以一起阅读并进行连接和更正。 这确保了每个人都有公平的发言权,并且每个团队成员都可以做出有意义的贡献。让有生活经验的人成为研究过程的一部分,并被列为论文的共同作者,以确保他们的贡献得到认可,这一点非常重要。在这项研究中,30名有智力和发育障碍的人参与了研究,他们并不是经过精心挑选的。[]有更复杂需求的成员在这项研究中没有被代表。问题:参与者是如何被招募的?我们从Aaron和Mocja那里得知,参与者是从参加Zoom活动的会员中招募的。他们创建了每周一小时的会议“周一魔法”,这是他们对Covid-19大流行的回应。该组织的成员能够以自主的方式发挥积极作用。一个由大约30名成员组成的核心小组每周都会想出一些“非常酷的东西”。12个月后,这个核心小组创建了415个活动(包括Facebook直播、静坐锻炼和Zoom活动)。作为对大流行的初步反应,他们想做的是问自己,他们是否仍然在实现本组织的目标,即增强自决、减少孤立和孤独、增强情感意识和复原力。从会员的问卷回答中可以发现,他们通过在线参与继续实现目标。问题:所有的研究人员都是参与者吗?Stephan说,其中三位合著者也是参与者。这项工作是向所有成员开放的,共同撰写这篇论文的人是那些“挺身而出”的人。问题:为什么有更复杂需求的人没有被代表?斯蒂芬告诉我们,当时只有一小部分会员能够访问在线服务。审计表明,有复杂需求的人在上网时面临多重障碍,例如人员支持和(可能)工作人员对网上活动不适合个人的态度。没有人因为需要支助而被排除在外。问:现场笔记中记录了多少在线活动?是否在不同的活动中通过不同的平台进行实地记录?考虑到每周发生的大量事件以及从实地记录中得出的结论,了解这些情况将是有用的。moja报告说,所有会议都记录在实地说明中,并注意到人口统计情况。这些笔记的摘录为他们的文章的分析提供了依据。在12个月的时间里,这包括223次Zoom会议和415次会员主导的Facebook活动。问:你是如何评估或衡量“联系和授权”的?我们从Mojca那里听到,在组织成员一起工作的方式中,联系和赋权是显而易见的。通过点对点支持开发和组织在线活动。斯蒂芬是get2together的数字大使,他开发了一系列在线教程。在线活动由会员主导。人们交了朋友。有一种‘我们在一起,我们会度过难关’的感觉。诺埃尔很高兴发现了更多关于合作研究过程的信息。以无障碍格式呈现材料的多次在线会议显然产生了娜塔莎所说的“真正的合作”。诺埃尔认为,当团队成员聚在一起时,他们之间的温暖和热情的工作关系是显而易见的,这也反映在每个人对问题的回答方式上。丹妮尔、纳撒尼尔和诺埃尔要感谢《英国学习障碍杂志》邀请他们撰写这篇《回应》文章,感谢《现在我连接了,这不是社会孤立,这是与人交往》一书的作者:在COVID-19大流行期间保持联系,因为他们对问题的热情、周到和鼓舞人心的回答。他们希望保持联系,并期待在未来的合作。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
2.30
自引率
20.00%
发文量
74
期刊介绍: The British Journal of Learning Disabilities is an interdisciplinary international peer-reviewed journal which aims to be the leading journal in the learning disability field. It is the official Journal of the British Institute of Learning Disabilities. It encompasses contemporary debate/s and developments in research, policy and practice that are relevant to the field of learning disabilities. It publishes original refereed papers, regular special issues giving comprehensive coverage to specific subject areas, and especially commissioned keynote reviews on major topics. In addition, there are reviews of books and training materials, and a letters section. The focus of the journal is on practical issues, with current debates and research reports. Topics covered could include, but not be limited to: Current trends in residential and day-care service Inclusion, rehabilitation and quality of life Education and training Historical and inclusive pieces [particularly welcomed are those co-written with people with learning disabilities] Therapies Mental health issues Employment and occupation Recreation and leisure; Ethical issues, advocacy and rights Family and carers Health issues Adoption and fostering Causation and management of specific syndromes Staff training New technology Policy critique and impact.
期刊最新文献
Issue Information What Approaches Described in Research Literature Enhance the Engagement of Children and Young People With Severe or Profound and Multiple Learning Disabilities? A Systematic Literature Review Staff Perceptions of Mental Health Relapse Prevention Support in a Specialist Mental Health Service in an Intellectual Disability Setting Item reduction of the “Support Intensity Scale” for people with intellectual disabilities, using machine learning Culturally adaptive healthcare for people with a learning disability from an ethnic minority background: A qualitative synthesis
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