Feedback on the resources
The response to the videos in the event was generally very positive with a majority of green cards displayed. The ‘Important people in my life and my relationships with them’ video received the most yellow cards (n = 11) indicating lower relevance for this video. Feedback from the discussion of the videos highlighted that the speaking pace in the videos was too fast and there was a preference for photographs over line drawings. For the final resources, the audio was re-recorded with people with learning disabilities and Black, Asian and minority ethnic heritage reading the scripts, at a slower pace. The line drawings were also replaced with photographs.
The participants enjoyed hearing about what other people thought and particularly resonated with the video outlining independence. They felt it captured some of the ambivalence relating to how service users feel about independence. However, they felt it was too focussed on independence meaning living in your own home. This video were therefore re-worked to include two narratives, one of a service user working towards increased independence, but remaining in a group community home, and another discussing their previous move from a group home to supported living accommodation.
One activity is based around a ‘culturegram’ which is a creative tool to help service users explore aspects of their culture. We received suggestions for refinements to the culturegram such as additional dimensions (e.g. practices within the home, festivals and celebrations), examples within these dimensions and the inclusion of a system to rate the relative importance of various aspects of a person’s cultural identity. It proved challenging to strike a balance between providing examples and prompts within the resources without being prescriptive, perpetuating stereotypes and attempting to reflect the diversity in cultural identity among our intended end users. This was most noticeably borne out when selecting images for the culturegram whereby space was limited on the poster and worksheet. Instructions and discussion prompts cards are therefore provided for service providers to facilitate discussion around this complex topic (Fig. 4).
Another activity seeks to identify features of good support in relation to support workers. This activity was well received, however, it was felt that there were too many cards to arrange in order of importance. Group members also felt the cards should reflect a more balanced range of attributes to make the activity more interesting as most of the cards were rated as important for good support. A more balanced set of cards was subsequently developed, however, as the aim of the activity was to address ‘good support’ (as emphasised in the ASC-LD study) rather than poor support, the cards were still aligned with that, but with more ambiguous cards that could stimulate discussion and make the activity more interesting.
Another activity involves service users organising various activities in order of importance when thinking about independence. The group felt that the poster for this activity included too many levels of importance, represented as ‘rings’ on the poster, and suggested that three levels rather than five would be sufficient. They also provided suggestions for further example cards. A different activity was designed to facilitate service users in thinking about their daily activities. Feedback indicated that this activity needed further development to help users move from mapping out what they currently do to thinking of things they would like to do. Issues around service planning and development were also highlighted which led to the development of a planning tool to help service users and providers identify and discuss potential barriers to participation in activities.
Feedback on the event
Feedback on the event was sought through easy-read feedback forms. The feedback was very positive; everyone enjoyed the day and the activities. Only one person felt that we did not say things in a way that they understood. Comments on the feedback forms included:
“Yes, I agree with things being said and presented at the start and the project is a good idea.”
“Good project, we should do this more often.”
“The day was very enjoyable and met different people with many interesting views.”
“Good to see so many people involved, enjoying it and being listened to.”
“I enjoyed the project that we did and all the different opinions that people said, it got me thinking.”
“Everyone had time to say how they felt.”
Reflections on the event
The mood was really positive during the event and everyone engaged with the activities. The programme seemed appropriate and well-paced. The event proved to be a useful method to involve a large group of people with learning disabilities in project development. However, it was resource intensive and time consuming. Planning the event took several months and a large team of facilitators were required on the day to help with the activities, to facilitate discussion and to record feedback. Payment of participants’ travel expenses and for their time required a sizable budget. Preferably, participants would have been paid a wage for their involvement–based on their commitment of over three hours of their time–but budgetary and administrative constraints restricted payment in this instance.
We expected a proportion of confirmed participants not to attend on the day, however, almost all attended. This resulted in groups that were too large and a rather cramped and a noisy room. A larger room would have been better with more space between the tables to reduce noise between groups.
There was a difficult balance to strike between keeping the event relatively short, and achieving our aims. During the voting section of the day, we felt conscious of the pressure to maintain momentum, and hold everyone’s attention, but we were aware that this might also have limited participants’ opportunities to fully consider their answers. The pace and level of activity might have led to some acquiescent responses, biased towards the positive. We had considered counter-balancing the questions but felt this would be too confusing. Perhaps allowing more time and posing more concrete questions relating to pace of the videos, use of images, and content would have yielded more balanced feedback.
People were interested in taking the work further and attending future events, however there was no resource for this. Future research should consider how to build and maintain ongoing relationships with service users and service providers to establish networks for inclusive research. Inclusive research tends to omit those with more severe learning disabilities [19]. This is a limitation of our study because only those with mild/moderate learning disabilities were involved. The Partnership Event approach may not lend itself to the inclusion of those with more complex needs. A more individualised approach may be more suitable for those with limited communication. For example, the Tools for Talking could be piloted with people with limited verbal communication and, rather than seeking explicit feedback, we could observe and feedback how the service user engaged with and responded to the activities.
Previous inclusive research has identified priority areas for further research, including, access to healthcare, communication with healthcare professionals, relationships (including friendships and parents with ID), employment, inclusion (including being able to do things in the community), discrimination, support, and independence [20–22]. These issues overlap with the topics identified in the present project in relation to support, independence, relationships, and activities which indicates transferability of our results. The differences may be anticipated by our focus on support services rather than health services. Moreover, the addition of cultural identity is a strength of our study as it has been previously overlooked when assessing satisfaction with services [23]. The Tools for Talking may therefore be useful for further research into how we can improve services. The culturegram may be especially useful in research and clinical/service settings to aid the assessment of cultural identity, amongst those from minority-ethnic as well as majority communities.
There is currently little conceptual clarity to determine the features of inclusive research and to guide its conduct, but it is driven by a commitment to a ‘respectful relationship and regard for the perspectives of people with [learning] disability’ [19]. Authors suggest that inclusive research should address issues that matter to people, leading to improved lives, should represent the views and experiences of people with learning disabilities, and should treat people with learning disabilities with respect [24]. The present project used the results of the ASC-LD study to ‘set the agenda’ to ensure that we represented the views and experiences of people with learning disabilities with Black, Asian and minority ethnic heritage Furthermore, authors argue for a flexible and expansive concept of how to do inclusive research and how to do it well and suggest that researchers should think more about how to do research inclusively rather than how to do ‘inclusive research’ [25]. The Tools for Talking project took this latter approach to develop a method to include a relatively large group of service user and providers in the development of the resources.
Bigby and colleagues review the literature on inclusive research with people with learning disabilities in an attempt to provide conceptual clarity. They suggest that inclusive research comprises three approaches, namely ‘advisory’, ‘leading and controlling’ (people led), and ‘collaborative group’ (where people with LD and researchers have equal partnerships with expertise in different areas). The authors argue that each has advantages and challenges and the choice of approach should be informed by the nature of the project, including the aims, resources and topic of investigation. We selected to use an ‘advisory’ process to harness the expertise of service users and providers in the development of the resources. One strategy was to use a Partnership Event which was felt to meet the aims of the study. We wanted to produce resources that were widely applicable and representative and therefore wanted to involve a relatively large number of people. This is a relatively novel approach as most studies express involvement through involvement of users in advisory committees, as conduits for recruiting other service users, to analyse data, as supporters or advocates of other service users, or in dissemination [26].
We used the same sampling methods for our partnership event as was used in the ASC-LD study and sought representation from the more prevalent ethnic minorities in the West Midlands region. We therefore did not consult with representatives from all minority ethnic communities, such as newer migrants. However we sought to create resources that were flexible and applicable across all adults with learning disabilities. Indeed, feedback through dissemination activities indicates that the resources are equally relevant for majority groups. The issues which emerged in the ASC-LD study were largely applicable to all adults with learning disabilities and are not unique to those with minority ethnic heritage. Many of the concerns relate to basic, fundamental aspects of good support and emphasise that providing services to people with Black, Asian and minority ethnic heritage should not be considered as a separate endeavour, rather, it is accounted for by provision of personalised, individualised services.