Digital adaptation of the Standing up for Myself intervention in young people and adults with intellectual disabilities: the STORM feasibility study

Digital interventions for people with intellectual disabilities

The use of digital health interventions with people with intellectual disabilities has been limited and this population has generally been excluded from e-health research. 42 Even though the scope of digital mental health is vast and people with intellectual disabilities who face multiple threats to their mental well-being might well benefit, they seem to have been relatively neglected in the discourse around digital mental health and the development and implementation of new (digital) interventions. 35 Historically, lower levels of access to the internet among this population have created a ‘digital divide’. 34 In 2019, Ofcom reported that people with intellectual disabilities in the UK had lower access to the internet compared with people without disabilities. This discrepancy was partly explained by lower levels of household ownership of PCs/laptops and tablets among this population (69% vs. 85% of people with no disabilities) and of smartphones (70% vs. 81%). 43 Contextual barriers to the use of digital interventions with people with intellectual disabilities also include concerns among many service providers about their own lack of digital skills which limit their opportunity to support people with intellectual disabilities. 44 However, it has been suggested that such barriers can be overcome with appropriate support and adaptations and a small, but growing, literature attests to the value of digital technologies to improve health as well as educational, vocational and leisure opportunities for this population. 35

The rationale for a digital version of the STORM intervention

The suggestion that the digital divide amongst people with intellectual disabilities needs tackling if we are to further avoid increasing existing health inequities has never been more evident than in the context of the pandemic. Increasing access to digital technology and the internet and generating e-health interventions that can improve the well-being of large numbers of people with intellectual disabilities should be a priority. It is also in line with the need to challenge health inequalities in the UK health and social care system stipulated in the National Institute for Health and Care Excellence Evidence Standards Framework for Digital Health Technologies. 45

Having the option to meet virtually can promote self-determination and social participation for people with intellectual disabilities,46 with benefits including increased communication and social interaction. 47,48 Digital technology could also be a means to widen access for members of this population to therapy. 42 The potential benefits of digital interventions for people with intellectual disabilities are supported through consultation work we carried out at various time points since the first UK lockdown (see Chapter 3, Usual practice). Self-advocates and third sector organisations reported that for many people with intellectual disabilities virtual meetings were a preferred means of connecting with others as home was seen as a safe and familiar space to discuss personal experiences, and it could allow increased confidence to speak up and engage in discussions. Many people with intellectual disabilities experience anxiety about moving around their local community or travelling alone or are reliant on support from others to attend services, both of which can act as barriers to joining and attending groups in person. Virtual meetings have been suggested as one way to help overcome this, with some organisations informing us that they have been able to reach more of their members since replacing F2F with virtual meetings. Furthermore, people with intellectual disabilities living in rural areas of the UK are often prevented from using community services and joining groups due to the absence or inaccessibility of public transport and/or support required to travel. Organisations we consulted, particularly those that cover rural areas, informed us that attendance at F2F meetings is lower among their members during the winter months and greater use of digital meetings could fill an important gap. We should stress that digital methods are by no means for everyone. In a recent large-scale study on the impact of the COVID-19 pandemic on the lives of people with intellectual disabilities in the UK, 42% were reported never to have been keen on online activities. 48 Therefore, adjustments to service delivery continue to be called for to meet the diverse needs of this population, and to reduce barriers to the inclusion and active participation of people with intellectual disabilities in their communities, both ‘real world’ and virtual.

The immediate need for and importance of STORM to help people with intellectual disabilities discuss negative experiences with their peers and resist stigma has been highlighted during the COVID-19 pandemic. The discrimination and inequalities people with intellectual disabilities have experienced during this time have also been highlighted. 49,50 Self-advocacy groups have often felt neglected by the government while their members had to shield, and have complained about lack of reasonable adjustments, including a failure to communicate social restrictions and rules. By continuing to meet virtually, these organisations have provided their members with space to connect with others and have sought to reduce the negative consequences of social isolation. They have emphasised the need for a space to discuss negative experiences and the stigma they face more generally, as well as specifically at this time when discrimination and social inequalities have been heightened.

Looking to the future, it seems important to offer a choice of delivery formats to access the STORM intervention to increase inclusion and respond to diverse preferences for engaging with peers. This aligns with our long-term goal to offer STORM as a widely and freely accessible public health intervention that can enhance the ability of people with intellectual disabilities to manage and resist the stigma they often face in their everyday lives. By potentially extending the reach of STORM among this population through the creation of a digital version, we seek to challenge exclusion and promote equality at multiple levels.

Adaptation of STORM for digital delivery and pilot study

In view of the aforementioned issues, the main aim of this project was to (1) adapt the STORM intervention for digital delivery (Digital STORM) to groups of people with mild-to-moderate intellectual disabilities, and (2) test delivery of the adapted intervention and outcome measurement in a virtual environment through a small pilot with four groups. The adaptation process is described in detail in Chapter 2. The pilot study is reported according to the progression criteria set out in the revised study protocol (see Chapter 2, Revised study design). The acceptability, adherence and fidelity of the intervention delivery are detailed in Chapter 3.

Objectives

The objectives were:

1. To adapt the existing STORM intervention for online delivery (Digital STORM), ensuring the content, number of sessions and direct contact time were the same for both STORM and Digital STORM.

2. To pilot the Digital STORM intervention in order to investigate the feasibility of recruitment to and retention of participants in Digital STORM; and adherence, fidelity and acceptability of Digital STORM, when delivered to groups of people with mild-to-moderate intellectual disabilities online.

3. To test digital administration of the study outcome and health economics measures.

4. To build on community assessments to describe what ‘UP’ for organisations delivering groups for people with mild-to-moderate intellectual disabilities may look like in the wake of COVID-19, to inform a potential future trial.

Progression criteria related to study objectives

Undertaking the pilot study of a digital adaptation of STORM was contingent on the study team being able to meet objective 1, to revise and adapt the intervention materials to the acceptance of the IAG and study management group (SMG). This objective was met by the end of March 2021.

The study progression criteria for objectives 2 and 3 are outlined in Table 2. For objective 2, regarding the feasibility and acceptability of Digital STORM, the progression criteria have been divided into two parts. Part one outlines criteria assessed using data collected from facilitators and through session recordings, and part two focuses on acceptability from the perspective of the pilot participants. Finally, for objective 3, progression criteria are defined to assess the feasibility of digital administration of the study outcome measures.

Three categories of progression indicators are provided, a strong indicator for progression, progression indicated subject to further amendments and progression not indicated. All progression criteria were agreed with the SMG, Study Steering Committee (SSC) and funder as part of the approvals of the amended protocol.

In addition to the above, the risk of exclusion from Digital STORM due to technical issues was considered, and a target was set of no participant missing more than two sessions, or parts thereof, due to technical problems (other than brief connectivity problems not exceeding 10–15 minutes).

Intervention Adaptation Group

In October 2020, the IAG was established to oversee the adaptation of the STORM intervention. The IAG consisted of our four PPI advisors (STORM expert advisors), the independent co-chair of the PPI group (CB), three group facilitators (from our stakeholder group), two research and impact staff from Mencap (as our intervention delivery partner), members of the research team (KS, LR, ER, MO, KD) and the director and a member of staff of Unthinkable Digital. Digital inclusion experts Unthinkable Digital were commissioned to work with the team because they brought expertise in digital inclusion and learning design specific to people with intellectual disabilities. Their particular knowledge and skills were deemed important to ensure that the adapted digital version of STORM would be optimised for the engagement of people with intellectual disabilities and ease of delivery for facilitators who would all be relatively new to online group facilitation.

Outcomes of the Intervention Adaptation Group meetings

The IAG met four times, at monthly intervals, between November 2020 and February 2021. Each meeting focused on one or several of the topics outlined above. During the meetings, the IAG was able to draw on community assessments already conducted by the research team to identify key considerations in adapting the STORM intervention for digital delivery. Also informing the IAG’s discussions, ideas and plans were insights generated through a web survey disseminated with support from our partner organisations. The survey sought to understand what facilitators had learnt regarding what works in making the shift from F2F to web-delivered activities, including how to prepare and support access to and engagement with web-based meetings and manage privacy concerns (further details about the survey are presented below and in Chapter 3).

A summary of the key recommendations for adaptation from the IAG meetings is provided in Table 3.

Digital STORM intervention

Logic model

A Logic model for the Digital STORM intervention is shown in Figure 3. The model was somewhat refined from the original version pertaining to the F2F version of STORM to reflect.

FIGURE 3.

Digital STORM intervention logic model.

Recruitment and retention to the pilot study

Retention, attendance and adherence

Retention, attendance and adherence were assessed by group facilitators recording participants’ attendance at each session using a bespoke attendance and feedback form (see Appendix 5). The form captured attendance at each session and included a rating by the facilitator for each participant of whether technical issues affected their engagement with the session. Ratings were on a three-point scale; (1) no/minimal issues for the person (did not unduly impact on running the session or their engagement), (2) some issues affecting participants’ engagement in the session (e.g. missed up to 15 minutes) and/or (3) significant issues affecting person’s/presence/engagement (e.g. missed more than 15 minutes). There was space for facilitators to make notes about how the technical issues affected the person. Additional space was provided with prompts for facilitators to comment on: (1) what went well during the session, (2) challenges to delivering the session as planned and (3) whether anyone had become unduly upset during the session due to the session content.

Facilitators were asked to complete the form after each session and to send it to the intervention partner (HB), so as to facilitate an understanding of the experiences and to inform discussions in supervision. Following supervision sessions, the completed document was sent to the Study Manager (LR) with any additional supervision notes added. In case of any missing attendance and engagement data, session recordings were used to assess what proportion of sessions participants were able to attend (to account for participants dropping out at any point, either due to poor internet connectivity or for other reasons).

Intervention fidelity

All Digital STORM sessions were video recorded, to conduct ratings of the intervention’s fidelity. Recordings were made using the record function available in Zoom/MS Teams. To enable recordings to be saved to local UCL computers/secure drives and to negate other more complex data-sharing procedures, a researcher (MO) set up the meetings in the relevant app and sent the joining details to facilitators to share with their group members. MO would then start the meetings, start the recording and then share hosting control of the meeting app with the facilitator. She would then turn off her video, microphone and sound and would not interact with nor observe the group during sessions and inform group members that this was the case. Recordings of Zoom meetings were end-to-end encrypted via Zoom’s recording function, while recordings via MS Teams were stored in the secure UCL cloud.

To assess fidelity to the Digital STORM manual, a checklist of core requirements was developed using a coding frame (Microsoft Excel spreadsheet) for (1) adherence to the manual, (2) group process and (3) facilitator engagement with group members (see Appendix 6). The checklist was used to rate the video recordings of sessions to determine whether core elements were definitely present/somewhat present/absent. The checklist was adapted from an existing fidelity instrument developed for group interventions and by taking into account the particular social and communication needs of people with intellectual disabilities. 51 Fidelity ratings were completed by the chief investigator (CI) (KS) and a second rater (KD). Both independently rated a session and discussed points of divergence to achieve a high level of reliability in their ratings. The data manager (SJ) randomised the remaining recordings, to identify session 1 or 2 and session 3 or 4 to be rated for each of the four groups. All follow-up sessions were rated. Rater 1 (KD) rated nine sessions across three groups and rater 2 (KS) rated three sessions from one group. Both raters kept a reflective log while rating the session recordings. Once finalised, the data were sent to the data manager (SJ) for analysis. Quantitative analyses were employed to explore the variation of fidelity scores across groups and the association between fidelity scores and outcomes. Furthermore, the recordings were used alongside the facilitators’ attendance records, notes and log entries to identify what challenges to implementing Digital STORM as planned arose and how these were managed, in order to identify the need for further revisions to the manual and/or delivery mechanisms ahead of a feasibility study.

Feasibility of intervention delivery and acceptability – qualitative methods

All Digital STORM participants were invited to participate in a virtual focus group interview with their fellow group members. STORM facilitators were invited to a virtual individual interview. Views were sought on study participation, barriers/facilitators to the intervention’s implementation, as well as potential future improvements to the content or delivery of Digital STORM sessions (see Appendix 2). During the interviews, we also asked about the perceived value, benefits and harm or unintended consequences of the Digital STORM intervention to develop a full understanding of the likely mechanisms of change and to ensure these are fully measured in a full study.

Both focus groups with participants and individual interviews with facilitators were conducted via Zoom or MS Teams, in line with their preferences. Recordings were made using the record function available in Zoom/MS Teams and later transcribed using Otter for qualitative coding and analysis.

Three of the focus groups were co-facilitated by a peer researcher from the STORM Expert Advisory Panel (HR) and a researcher (MO), and one was conducted by a researcher (MO) alone. The focus group meetings took place following the final STORM session and once all post-intervention data had been collected. Group facilitators were also present for the discussions. Not all group members were present for the full duration of the focus group meetings, with some arriving late, leaving early, or being absent altogether (full details in Appendix 7). Semistructured interviews were conducted with the four group facilitators either by the CI or MO. Both facilitator interviews and focus groups were conducted via a video call platform (Zoom or MS Teams), with facilitator interviews lasting 40–60 minutes and focus groups lasting up to 90 minutes.

Questions were developed to obtain participants’ and facilitators’ views on the feasibility and acceptability of the Digital STORM intervention, informed by the progression criteria set out in Chapter 4, Adapting and piloting the existing STORM intervention for online delivery. This was supplemented with questions to capture the impact of Digital STORM on participants (see Appendix 2). The interviews and focus group recordings were transcribed using the Otter artificial intelligence software and anonymised by a researcher (MO) prior to analysis.

Health and social outcome measures

The health-related and social outcome measures used in the pilot were as follows (the combined measures as presented in Qualtrics^XM are presented in Appendix 3):

• Mental well-being measured using an adapted version of the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS). 55 The WEMWBS is a 14-item scale validated for adolescents aged 13+ and adults. The scale was adapted by the research team by amending the reference period from 2 weeks to 1 week; simplifying the wording of some items, for example, changing ‘optimistic’ to ‘hopeful’ and turning gerunds to simple past tense forms; and reducing the response scale from a five- to a four-point scale.

• Self-esteem, measured using a six-item version of the Rosenberg self-esteem scale, validated for people with intellectual disabilities. 56

• Self-efficacy in rejecting prejudice (SERP), single self-rated item used in our pilot: ‘At this moment, how confident do you feel about standing up to prejudice?’, rated on a four-point scale (‘not at all confident’ to ‘very confident’).

• Reactions to Discrimination (RtD) four-item subscale of the Intellectual Disabilities Self-Stigma Scale, measuring emotional reactions to stigma in people with intellectual disabilities. 57

• Sense of Social Power: adapted four-item version of the Sense of Power Scale, to date not yet validated for people with intellectual disabilities. 58

The above scales were rated using a four-point Likert response scale; other than for the SERP the response options were ‘never, sometimes, often, always’. The Likert scale for all items was supported by a pictorial representation of the rating scale.

Measures for economic evaluation

The measures for economic evaluation used in the pilot were as follows:

• A Service Information Schedule (SIS) was developed to capture comprehensive costs associated with the Digital STORM intervention. Information was sought on staff salaries, on-costs, overheads, training costs, materials and postage costs (where applicable). Data were collected from the research team on the adaptation of STORM for online delivery, from the delivery partner on the provision of training, supervision and materials, and from facilitators on time spent preparing for delivery, feedback and follow-up, and materials.

The information on staff involved in intervention-related activities required was as follows:

• profession/job title (to approximate salaries if missing)

• salary (annual or hourly)

• grade where applicable (to approximate salaries if missing)

• oncosts (employer pension and NI contributions)

• overheads

• number of hours spent on each task.

The SIS was completed by intervention providers in collaboration with the research team and further explored during qualitative interviews with facilitators.

• EuroQol-Youth (EQ-5D-Y),59 a self-report measure of health-related quality of life across five domains that are rated on a three-point scale, was administered. The EQ-5D-Y is a version of the EQ-5D-3L aimed at children and adolescents. The main difference is in the wording of questions, aiming to make the measure more accessible for this population. This measure allows for the calculation of quality-adjusted life years a common measure in health economic evaluation.

• Client Service Receipt Inventory (CSRI),60 a self-report measure of use of services and supports. A short version covering a retrospective 3-month period was developed and adapted for use with input from the PPI Advisory Group. Participants were asked to provide information about contacts with general health services, mental health services, third sector organisations and education support as well as informal help received from supporters/carers and friends (see Appendix 4).

Assessment time points

A schedule of enrolment and assessments for group members at baseline and post intervention is provided in Table 4. The intervention commenced 1–20 days after baseline assessments. All baseline data were collected by the end of April 2021, prior to participants undertaking session 1 of the intervention. Post-intervention data were collected 3 months from baseline, range 10–12 weeks. All post-intervention data were collected following session 5 and before the qualitative focus groups and interviews took place (by the end of June 2021).

Procedures for digital administration of study measures

Following informed consent, baseline measures were administered to groups 1–3 by two research assistants (MO, KD), and to group 4 by two Doctorate in Clinical Psychology trainees supervised by the CI and Study Manager. All research staff carrying out data collection were appropriately qualified and completed relevant training. Clarification of any questions relating to STORM that arose during sessions was referred to the CI or Study Manager.

Administration of all measures followed an assessment manual, which allowed for some flexibility depending on participants’ support needs. Items were read by the researcher one by one and visual supports and practice items were used to support understanding and familiarisation. Participants’ responses were entered directly into the study Qualtrics^XM database via an online link, set up by the data manager at the clinical trials unit (SJ). Data collection sessions were audio-recorded using the record function available in Zoom/MS Teams. Participants provided consent for the recordings to be used for potential training of researchers in the future.

After completing the baseline measures, all participants were asked three questions to assess the acceptability of collecting measures via video meeting platforms:

1. What did you think about doing the interview?

2. Would it be ok for others to do this?

3. Is there anything we could do to make it better?

Participants received a £10 retail voucher for a retailer of their choice at each assessment point in recognition of the time taken to complete the measures.

Outcome data analyses

Descriptive statistics were used to describe baseline demographics and summarise responses on the proposed outcome measures. Statistical methods are therefore descriptive in nature. Significance tests are not reported as this is a pilot study and is not a test of the intervention. Categorical data are presented using counts and percentages and continuous data using means and standard deviations or medians and inter-quartile ranges, as appropriate. For each outcome measure where a participant had completed at least one item, the number and percentage of useable forms are reported. Baseline data completeness results are reported in relation to the progression criteria described in Progression criteria related to study objectives.

Economic evaluation analyses

The feasibility of economic evaluation was assessed using rates of completion of information about the cost of the intervention (SIS), rates of completion of information about access to formal and informal sources of support (CSRI) and rates of completion of the EQ-5D-Y. In addition, an attempt was made to compare index values to other studies that have used the youth version of the measure.

A comprehensive intervention cost for Digital STORM was calculated based on SIS data, including information on staff salaries, on-costs, training costs, materials and travel time.

The proportion of returned CSRIs and the proportion of questions completed at each time point are reported. The proportion of participants reporting contacts with a given service was examined to determine whether it is feasible to assess cost-effectiveness from: (1) a public sector perspective, or (2) a wider societal perspective in a full trial.

The patient and public involvement advisory group

The PPI advisory group consisted of three men and one woman with intellectual disabilities, all of whom were advisors during the earlier development and initial piloting of the STORM programme (hereafter referred to as STORM experts). The group named themselves the SEAP. SEAP meetings were co-chaired on a rotational basis by Christine-Koulla Burke (CB), Director of one of our partner organisations, the FPLD, and one of the STORM experts with intellectual disabilities. The meetings were also attended by the Study Manager and Research Assistant to present materials and matters for discussion and feedback to the group.

The aims for PPI in the current project were:

1. to support the inclusion of people with people with intellectual disabilities in research that matters to them;

2. to bring to the team lived experience and knowledge of both intellectual disabilities and stigma. The team sought to engage with this experience and knowledge to:

   1. shape the participation of organisations and people with intellectual disabilities in the research;

   2. ensure the accessibility of all study materials and processes for potential participants in the research (e.g. information sheets, consent forms);

   3. adapt outcome measures where relevant and advise on appropriate data collection processes.

Following agreement of the amended protocol to adapt the STORM programme for digital delivery, the aims of the PPI evolved to include:

1. co-design of Digital STORM resources and approaches through participation in an IAG, details of which are provided above.

Patient and public involvement activities

Early SEAP meetings were used to re-familiarise the STORM experts with the STORM programme, discuss the PPI plans, clarify roles and to provide training (e.g. on PPI and research methodology relevant to this study, such as RCTs). The panel discussed and agreed how they wished meetings to be run, including sharing responsibility for co-chairing meetings. To enable this, the co-chairs (i.e. one of the STORM experts and CB) would meet 30 minutes ahead of each meeting to run through the Easy Read agenda and discuss preferences for co-chairing the respective meeting. The co-chairs had an annotated version of the agenda with small prompts (in red text) to help them in the role. For each meeting, a folder with a record of new words and concepts that arose (which might otherwise be considered jargon) was available to support everyone to work together. Easy Read minutes were also produced. At the start of each meeting, the research team provided feedback verbally on actions taken in response to previous input from the STORM experts. At the end of each meeting, dedicated time allowed everyone to reflect on how the meeting had gone. This allowed us to adjust how we worked and to put additional support in place where necessary. We continued to meet with the STORM experts via Zoom following the COVID-19 pandemic outbreak. In addition to Zoom meetings, the research team consulted individual advisors directly by telephone.

To check the materials and processes developed with the STORM experts, the project team made presentations to the FPLD Advisory Group and a group of Mencap Research Champions (a group of Mencap employees with intellectual disabilities who advise on research at Mencap). The team provided a taster of the first STORM session to the Mencap Research Champions to gauge views about presenting intervention resources in the planned format (the STORM Wiki, see Chapter 1). This group also commented on the draft project information sheets to check understanding, especially around the explanation of the RCT methodology. Information about STORM outcome measures was reviewed with both the Mencap Research Champions and the FPLD Advisory group members to ensure wording, practice items and visual supports were easy to understand and accessible. A representative from the FPLD Advisory group also worked with the team allowing them to pilot the online delivery of the study measures. These groups’ comments and feedback were presented back to the STORM experts who agreed the final amendments to be made by the research team.

Stakeholder group involvement

A group of experienced group facilitators from the third sector and education providers was established. The group met at key points during the study. These meetings were more informal and were co-led by the CI and Study Manager. Initially, this group provided input on plans for recruitment, study materials and procedures. As the work evolved to co-designing Digital STORM, the model of separate meetings ceased and all advisors joined a larger IAG. Members of this stakeholder group were also invited to all study steering group meetings and regularly provided input in this forum.

Outcomes from patient and public involvement and stakeholder contributions

The PPI for the study led to significant influence in a number of key areas. First, considering how to help potential participants with intellectual disabilities understand the study design, all advisors shared their thoughts and frustrations in understanding the RCT design themselves and shared ideas for presenting this information to others through project information sheets. This work also led to the production of a video by SEAP members to promote the benefits of taking part in the research, no matter which arm of a trial one might be randomised to. Owing to the pandemic halting recruitment, we did not get to use these resources further.

Significant contributions were made to the adaptation of two study measures (the WEMWBS and the CSRI). The data presented in Chapter 4 on the feasibility and acceptability of the study measures are testament to the impact of the PPI work in these measures’ development.

The PPI advisors’ input was critical to our decision-making whether to take an extended pause to the study in response to the pandemic or proceed to the development of a protocol for a digital adaptation of STORM and associated pilot. The STORM experts made their views firmly known to the team and NIHR, how important it was in their view to continue to tackle stigma, with their and others’ experiences of discrimination during the pandemic bringing this into stark relief in new ways. They conveyed this via a letter to the funder, and also first hand in a virtual meeting with the funder arranged to discuss the proposed adaptation for digital delivery. The STORM experts were keen to adapt to the current context and to use the study resources and expertise appropriately. Both STORM experts and facilitator advisors encouraged the team to think about delivering STORM via online meetings that were already happening in many organisations. They noted that, for some, digital meetings were preferred and that digital options supported individuals to engage who might not do so in a F2F context.

Facilitator advisors (from the stakeholder group) made a good case to the team for having a digital option which would still have relevance beyond the pandemic, for example, allowing people living in more remote areas to join in, to support activities to continue in the winter months when engagement in person typically reduces, or to run groups at times of the day when people with intellectual disabilities may be reluctant to venture out. All advisors highlighted concerns about people who may experience digital exclusion and for this reason did not want to limit the future of STORM as a public health intervention to a digital-only context, advising us that many people will want to return to F2F group meetings in the future.

The STORM experts also worked with the team to write a chapter in a book (Hierarchies of Disability Human Rights, Routledge Press, Interdisciplinary Disability Studies Book Series, in press). This focused on their involvement in the STORM research and how being involved in research and within the work of universities intersects with the human rights agenda. The group also co-wrote a blog post for British Medical Journal Open with the CI, on the reinforcement of society’s negative stereotypes of people with intellectual disabilities as ‘vulnerable’ and ‘victims’ (rather than active agents) during the pandemic, also making reference to the STORM study and need for more anti-stigma interventions in this field. 62

Critical reflections on patient and public involvement

Meeting regularly at the start of the project with the PPI group was important, but it proved challenging, particularly in the early stages, as the development of accessible materials and ensuring that all PPI group members were adequately supported to attend meetings proved very time-consuming. This eased over time once meeting materials could be reused and good systems were developed for providing support.

Resources to support the involvement of people with intellectual disabilities as project advisors may require additional funding to allow flexibility, for example, if some advisors need more training or support than others and to be able to adapt to the different activities that advisors may want to be involved in. For example, in this project, the advisors asked to be involved in meeting other groups that we consulted but this had not been planned or costed for. In addition, advisors adopted different roles, often on a rotational basis. While this allowed for variability and broader skills development, it reduced the scope for the development of more specific and transferable skills and also proved more resource-intensive in needing to prepare and support PPI advisors for different activities and roles. Going forward, it should be considered whether individual advisors should lead different activities and assume more narrowly defined, specific roles for more complex activities. For example, one PPI advisor might adopt a governance role and represent the wider panel at SMG and other meetings; another advisor might have more of a role as a peer researcher; while another might represent the panel when the research team consults with other groups and so on.

The pandemic has been a challenging time for all of our advisors, some experiencing the negative effects of the pandemic directly or, in the case of our facilitator advisors, needing to respond to the pandemic and provide support to members of their organisations in new ways, while also navigating a fluctuation in staffing levels (and stresses in their personal lives). This has at times affected our advisors’ ability to contribute to the project and thus necessitated more flexible and less structured ways of working together. The process of working together remotely has been one of continual learning; all advisors have given us constructive feedback which has helped us work together more effectively. Ideally however, meetings in person are felt to be more beneficial to ensuring good communication standards and the development of trust and positive relationships.

Facilitator training and supervision uptake

The group size at each training session varied according to facilitator availability. For the first training session, two facilitators completed the training together with both LR and HB. The other two facilitators undertook the training individually with LR. For the second training, it was possible to bring everyone together in a joint session. While there was the opportunity to try out the STORM materials and practice as a group, none of the facilitators had enough time to take this up.

All facilitators engaged with the supervision sessions offered by the intervention partner. The average number of supervision sessions attended was three (range sessions 2–4). All facilitators had a supervision session prior to running session 1. Thereafter, three facilitators engaged in a supervision session after session 1, one had supervision following session 2 (instead of after session 1, as this coincided with the college half-term holiday), and one facilitator had a supervision session after session 4. Supervision sessions ranged from 15 to 50 minutes in length. After sessions 2, 3 and 4, those who chose not to have a formal supervision session exchanged e-mails with the intervention partner to discuss minor issues, or share experiences.

The facilitators seemed enthusiastic and engaged throughout the time they were delivering the intervention and were in contact with HB regularly via e-mail. Discussion during supervision sessions mostly focused on practical issues related to the session content (e.g. issues relating to streaming and the format of the videos). The sessions also gave facilitators the reassurance that they were doing a good job at delivering the intervention and likely helped to maintain intervention fidelity. No issues relating to safeguarding or the well-being of group members arose during the pilot.

Baseline characteristics of participants

As can be seen from Table 6, of the 22 participants approximately two-thirds were female and the majority identified as ‘White British/white other’ (73%). The median age of participants was 34 years. Forty-one per cent reported attending mainstream school and 36% a special school. Sixty-eight per cent reported attending a self-advocacy group.

Feasibility of delivering Digital STORM

Eight main themes and associated subthemes were identified concerning the feasibility of Digital STORM delivery from the perspective of group facilitators. These are organised into three areas of interest: (1) feasibility of using Digital STORM resources/support; (2) feasibility of digital technology; and (3) feasibility of managing other digital delivery challenges. Of the eight main themes, three were developed during the design of the analytical framework to inform decisions on the study progression criteria: managing technical difficulties; maintaining/managing privacy; monitoring and managing emotional responses. The other themes were developed during the initial coding and categorisation of the data: preparing to deliver STORM; use of resources within sessions; action planning; facilitating engagement in the intervention; and access to a range of support. An overview of the themes and their constituent subthemes, together with the frequency with which facilitators commented on each is presented in Table 9. Facilitators could be recorded as endorsing and commenting on subthemes both positively and negatively; hence, some of the frequencies total more than four.

Acceptability of the Digital STORM intervention

Of the eight main themes related to acceptability of the intervention, five themes were derived from the objectives and progression criteria: acceptability of the resources and activities, acceptability of digital technology, acceptability of privacy and support available, recommending Digital STORM and views on intervention delivery mode. The remaining three themes, perceived benefits of the intervention, likes and dislikes and suggested improvements, were developed during the initial coding of the transcripts and before the development of the coding framework.

Feasibility of collecting outcome measures

Very high levels of data completeness were achieved (Table 10). The target set out in the progression criteria was to reconsider the appropriateness of the measures for remote data collection if less than 80% of collected data at baseline were useable. With the exception of one measure, 100% of completed forms were useable. One participant missed just one item on the RtD Scale. Outcome variables are summarised at baseline and post intervention. Twenty-one participants provided data post intervention.

Feasibility of assessing cost effectiveness

Intervention cost

While not strictly part of the study objectives, preliminary intervention costs were calculated.

Staff costs

Staff costs by group and activity at 2021 rates are shown in Figure 9. All costs other than the provision of training and supervision were borne by participating organisations. Variation in the cost of delivery and training received, which is based on a constant number of hours across all groups, is due to differences in hourly pay. We can also note variation in the cost associated with preparation and feedback, which varies both due to differences in time and differences in pay. Supervision time also varies, but less so than preparation and feedback. The variation in hours is shown in Table 12.

FIGURE 9.

Staff cost by group and activity (not including oncosts and overheads).

TABLE 12 - Staff hours by phase and intervention

Category	Group 1000	Group 2000	Group 3000	Group 4000	Average
Delivery	7.50	7.50	7.50	7.50	7.50
Feedback	0.00	7.00	2.50	0.00	2.38
Preparation	0.58	16.00	3.75	2.50	5.71
Training	2.75	2.75	2.75	2.75	2.75
Supervision	4.00	4.83	3.00	2.33	3.54
Total	14.83	38.08	19.50	15.08	21.87

Service use

Data on the CSRI were available for all 21 participants who provided both baseline and post-intervention data. It is therefore feasible to collect data on service use to assess cost effectiveness in a full trial.

The proportion of study participants reporting contacts with a given service is reported to determine whether participants rely primarily on formal services or informal care for support.

Table 14 shows responses regarding service use on the core CSRI at baseline and post intervention. As noted above, one participant dropped out before the end of the study.

Table 15 shows the list of other services noted by participants. Participants received a range of services and support across many domains, including formal as well as informal care. In a number of cases, when asked about ‘other services’, that is, those outside the core CSRI, participants responded with a service that is also found on the core CSRI. These have been reconciled to core CSRI responses accordingly.

Data on medication use were also collected. Participants were asked whether they used any medication, whether they knew what it was for, and what that reason was (Table 16).

Analysis of EuroQol-Youth

Data on the EQ-5D-Y were available for all 21 participants who provided both baseline and post-intervention data. It is therefore feasible to collect data on health-related quality of life from this population.

EuroQol-Youth descriptive system

The descriptive results showing the individual ratings of problems in five domains on three levels are shown below for the baseline (Table 17) and post-intervention (Table 18) time points.

TABLE 17 - Baseline scores for EQ-5D-Y (descriptive system; N = 21)

Levels/dimensions	Mobility	Self-care	Usual activities	Pain and discomfort	Anxiety and depression
No problems	17 (80.95%)	17 (80.95%)	14 (66.67%)	14 (66.67%)	13 (61.90%)
Some problems	2 (9.52%)	4 (19.05%)	7 (33.33%)	4 (19.05%)	5 (23.81%)
Unable/extreme problems	2 (9.52%)	0 (0%)	0 (0%)	3 (14.29%)	3 (14.29%)

TABLE 18 - Post-intervention scores for EQ-5D-Y (descriptive system; N = 21)

Levels/dimensions	Mobility	Self-care	Usual activities	Pain and discomfort	Anxiety and depression
No problems	18 (85.71%)	19 (90.48%)	18 (85.71%)	12 (57.14%)	14 (66.67%)
Some problems	1 (4.76%)	2 (9.52%)	2 (9.52%)	6 (28.57%)	6 (28.57%)
Unable/extreme problems	2 (9.52%)	0 (0%)	1 (4.76%)	3 (14.29%)	1 (4.76%)

There is a general trend of problems resolving over time, except in the pain and discomfort domain (Figure 10). While the small sample size and study design do not permit any generalisations or conclusions to be drawn, the proportion with any level of self-reported problems at baseline is such that, were the same pattern to be found in a larger sample, changes effected by the intervention may be captured on this measure. The ‘usual activities’ dimension showed the largest movement between baseline and post intervention – of note, this may well be due to the impact of changing COVID-19-related social restrictions over time.

FIGURE 10.

Comparison of EQ-5D-Y scores over time.

Acceptability of using routinely collected data

Immediately after completing the CSRI post intervention, all 21 participants were asked whether they would be happy for researchers to find out the same information from their records (data linkage), clearly explaining the purpose of this question being for future research and not the current research study.

Out of 21 participants, 20 said they would be happy for researchers to gather their health information from their records. One participant said that they would not be happy with this and they would prefer it if researchers asked them.

Adapting and piloting the existing STORM intervention for online delivery

Research objective 1 was to adapt the existing STORM intervention for online delivery. This objective was met through the work of the IAG group between November 2020 and February 2021.

The IAG made changes to the intervention structure, to enable both a positive engagement experience and ease of monitoring group members. The intervention content remained largely unchanged, only some streamlining of the number of videos per session was undertaken to ensure the content in each session could be covered within the shorter 60-minute time frame. The delivery mechanism (web-based meetings) was the biggest change and necessitated additional guidance to be produced in the intervention manual, as well as changes to the configuration of materials on the Wiki. Alternative resources were also deemed necessary, which led to the production of a new group member booklet. Guidance for facilitators around managing privacy and meeting participants’ needs for support was also considered. Additional details were added to the manual and facilitator training. It was however accepted that these issues were to some extent out of the control of the research team and would therefore require close monitoring as part of the facilitators’ supervision meetings and through feedback to be sought in the qualitative interviews.

Investigating the feasibility and acceptability of Digital STORM

Research objective 2 was to investigate the feasibility and acceptability of Digital STORM when delivered to groups of people with mild-to-moderate intellectual disabilities online. We were able to meet the recruitment target of four groups to pilot the intervention and of the 22 participants who provided informed consent, 21 were retained to post intervention. The majority (90.9%) of participants attended three or more sessions. Indeed, most participants (63.6%) attended all five Digital STORM sessions. The majority did not miss any sessions, or no more than 15 minutes of any session, due to significant technical issues. This was considered acceptable as it had parity with technical problems that commonly occur with any meetings that rely on digital technology and internet connectivity and did not create an unreasonable expectation or burden on facilitators or participants to ‘catch up’ on any material missed. Fidelity of the intervention delivery in line with the manual was assessed through reviewing and rating video recordings of selected sessions. Facilitators reported the recording of sessions as acceptable and over 90% of the core intervention requirements were assessed as fully met. Accordingly, all the progression criteria for objective 2 were fully met.

During individual interviews with facilitators and focus groups with group members, the Digital STORM intervention was found to be feasible and acceptable. The detailed manual and training enabled facilitators to familiarise themselves with the intervention aims, activities and resources. Another factor that influenced facilitators’ preparedness for delivering the intervention was the time available to them to prepare. Facilitators’ previous experiences of facilitating and of delivering activities via web-based meeting platforms helped them feel prepared.

In relation to the use of the intervention resources within the sessions, a more mixed picture emerged. Facilitators noted challenges using the Wiki, in particular in relation to playing and sharing of videos, as the amount of inactive time on the Wiki website ahead of accessing a video meant the Wiki often logged facilitators out. They also noted that the Wiki limited the size of the viewing window, which made it more difficult for those on mobile phones to view videos. Sharing other content was less difficult, but in general, facilitators tried to keep screen sharing to a minimum. The manual was helpful in guiding facilitators through the sessions. However, facilitators reported that trying to co-ordinate between the Wiki, manual and operating the web-meeting functions could make facilitating the sessions complex. The group member booklet was welcomed by facilitators and participants. Some improvements were suggested to the images in the booklet section on action planning. Facilitators found the action planning (session 4) more challenging than earlier STORM sessions to deliver and support group members with. There was variability around the implementation of action plans, factors influencing this included: how proactive facilitators were in providing support outside sessions, how easy it was to generate ideas with group members and ensuring that group members had the support they needed.

While facilitators acknowledged that there were technical challenges (see above), these were felt to be manageable. Other digital delivery challenges were also found to be manageable, for example, facilitators felt appropriate levels of privacy were maintained and that any threats to privacy were easily navigated. On the whole, facilitators felt it was possible to monitor group members’ emotional responses to the intervention content and to provide support. The most challenging time to monitor participants’ reactions was during screen sharing, in particular when sharing the videos.

Facilitators’ reflections on engaging group members in the intervention brought to the fore that the content could be both emotionally and conceptually difficult for some group members. It could be emotionally difficult in the sense of hearing about negative ways in which people with intellectual disabilities are often treated; this was also found in our earlier pilot where groups met in person. In both instances, group members felt it was important to acknowledge these issues, even if it did elicit feelings of sadness in some. Furthermore, in our earlier pilot of the F2F version of STORM, group members’ and facilitators’ narrative accounts suggested that the intervention gave them an opportunity to process such emotions. 31 Where participants did not have personal experiences of stigmatising encounters to draw upon, this also posed a challenge as it required group members to engage their imagination to consider ‘what if’ type scenarios, which could make some of the intervention content more conceptually difficult to engage with. This only arose with the group run in a special education college and was not observed in our earlier pilot of the F2F version of STORM with ten groups (N = 67). This suggests that the appropriateness of delivering STORM within very sheltered environments may need further careful consideration. Another area that was conceptually difficult related to action planning, particularly the need to generate ideas that were both personally meaningful and realistic to implement. In some instances, participants chose to plan something as a group or with others. This was in keeping with the intervention manual and some groups took a similar approach in our earlier F2F pilot. 31

A key mechanism in the intervention logic model is that of peer support. Peer support was enabled throughout the intervention sessions, and facilitators also reflected on this being an important component. Group members received support from others besides the facilitator and peers; this included family and paid carers who provided technical support for some participants to join the intervention sessions, and some also provided support with the implementation of action plans. Ensuring support from others required facilitators to be proactive. Good pre-existing relationships were important in galvanising family members’ or paid carers’ involvement. There was a suggestion that there may be benefits of family or paid supporters joining the intervention sessions. This is an area that would require careful consideration both from a choice and empowerment stance and in relation to the most effective ways to engage carers in health and well-being interventions for people with intellectual disabilities, which as yet appear unclear. 65 Importantly, it is possible that carers could impede as well as facilitate engagement and that their inclusion could well override participant choice and opportunities for participants developing greater self-efficacy and independence. 66

The intervention was considered to be acceptable to group members and facilitators. All said they would run or take part in Digital STORM again and would recommend it to other facilitators or people with intellectual disabilities. It should be acknowledged that these recommendations while taken here as a proxy for acceptability may reflect a desire to please the research team and not to be critical of the intervention. However, viewed in combination with other reports of participants’ experiences of the Digital STORM intervention (including what they liked about it) the perceived acceptability does seem to be promising. There were mixed views about digital versus in-person delivery of the intervention, with a range of arguments for and against each mode. None of the facilitators or group members had experienced the intervention in person and, therefore, they were not able to make an informed judgement with regard to delivery mode. Furthermore, it is important to note that in exploring UP it was indicated by the facilitators running groups online during the pandemic, that their (and their group members’) longer-term preferences for meetings would be to have a hybrid offer of both in person and online attendance of meetings. Our facilitator stakeholders from the third sector also suggested (during IAG meetings) that this would likely be how they would operate in future. Subsequently, as restrictions have eased, this has become a reality for their offer to the people with intellectual disabilities they support. This validates the work undertaken to adapt STORM for digital delivery, as we are now in a position to offer an intervention which could be delivered to groups in person and online, reflecting a new era of approaches to supporting people with intellectual disabilities.

Finally, the analysis of the interviews and focus groups allowed an understanding of the perceived benefits of the intervention. While this was not an a priori objective of the research, these insights should be considered in planning a future trial, in particular to inform considerations around study engagement and retention, as well as suitable health and social outcomes to measure. Group members in particular spoke about personal awareness, learning and growth. They felt they had gained an awareness and deeper understanding about what it means to have a learning disability, were more able to talk about themselves and had recognised that they could stand up for themselves. They had learnt how to stand up for themselves and others and how to manage difficult situations. They had grown personally in terms of general confidence, but also confidence to assert their needs and rights, and some talked about a sense of pride and increased independence. These themes triangulate with those seen in our initial F2F pilot. 31

Digital administration of study outcome and health economic measures

The third research objective was to test the digital administration of the study outcome and health economic measures via web-based meetings. All procedures and materials for supporting remote administration of study measures were finalised during the adaptation phase. Digital administration of the study outcome and health economic measures was undertaken with all pilot participants at baseline and post intervention. Collecting outcome data via a web-based meeting platform enabled the team to recruit people from further afield (e.g. Wales and North of England as well as South East England) than would have been possible if data collection had taken place in person.

The results show very high levels of data completeness achieved at both baseline and post intervention for the outcome measures. Other than one measure with one item response missing, completed forms were 100% useable. Overall, data availability for economic evaluation was very good, and there were no major issues identified that would pose a barrier to conducting a cost-effectiveness analysis alongside a full trial.

Group members’ narrative accounts of their experience of completing the study measures were overall very positive. These positive responses of the research assessment sessions may in part reflect the fact that people were experiencing varying degrees of isolation and reduced opportunities for meaningful engagement and relationships because of the pandemic. 48,67 They may therefore have particularly enjoyed and appreciated having one-to-one time with an interested researcher.

Group members felt it would be acceptable for other people with intellectual disabilities to complete the measures in the way they had, via web-based meetings with a researcher. Further, in relation to the acceptability of collecting some health economics data via routinely collected data, this was appraised positively by all participants but one.

Based on these findings, we can conclude that it was both feasible and acceptable to collect study outcomes and health economic data remotely via web-based meeting platforms. Moreover, the data produced via this method of data collection meet the progression criteria of more than 80% of the data being useable. The implications of these findings for data collection during a later trial are discussed below.

Usual practice

The fourth and final research objective was to build on community assessments to describe what UP might look like for groups of people with mild-to-moderate intellectual disabilities in the wake of COVID-19, to inform a potential future trial. Many organisations had transferred group meetings to a digital environment, suggesting that it would be possible to have an in person or digital ‘UP’ control arm in a potential future trial.

Recruitment and retention

While we were successful in recruiting the target number of groups and participants during the pandemic, the numbers involved were small. It is possible with the move to web-based meetings that facilitators were looking for new activities to engage their groups in and this could have aided recruitment to the pilot. Furthermore, all facilitators and group members consented on the basis that they would receive the intervention. It therefore remains unclear whether the process of recruitment to a future trial would be feasible and acceptable.

It needs emphasising that for the three community-based groups, all participants were actively engaged with the respective organisations and as such may have been more socially engaged and motivated than a representative sample of people with intellectual disabilities. In general, the group format and need to be part of an established group for people with intellectual disabilities articulated in the Logic Model (see Figure 3), unquestionably make it harder to reach individuals who may be very socially isolated and perhaps at greatest risk of poor well-being.

Finally, we have not been able to assess whether it would have been possible to retain participants to a follow-up 12 months from baseline as originally planned for the feasibility RCT.

Intervention materials

Feedback from facilitators indicates that the Wiki is not the best format for the delivery of the intervention. Some facilitators said they would have preferred having the materials on PowerPoint slides, together with the videos streamed via a YouTube channel. The participant booklet, introduced as part of the digital adaptation to facilitate sharing of notes and resources, was generally received positively but requires some modifications to the images in the action planning section.

Methodological

There were some limitations with the focus group methodology, namely that we were not able to achieve attendance from everyone who completed Digital STORM and that some participants only attended part of the focus group meetings. Every effort was made to ensure the focus groups would be a comfortable experience for participants; for example, to avoid overburdening participants, focus groups were purposefully not scheduled for the end of the fifth session, but on a separate occasion (as advised by our stakeholder advisors and reinforced by the group facilitators when making arrangements). In prompting discussion about group members’ experiences of Digital STORM, it is difficult to discern whether for some questions group members agreed with others’ comments because they shared the same perspective or whether they were unsure how to respond to the respective question. Going forward, it may be more beneficial to carry out individual interviews with STORM participants. Moreover, the individual interviews with facilitators did not elicit a rich description of the perceived benefits of the intervention in the same way they did from the group members. One reason for this, noted by some of the facilitators, is that intervention effects take time to materialise, yet the time frame for accessing feedback from facilitators and participants was tight in the present pilot as the focus of the present pilot was on feasibility and acceptability.

While the use of the EQ-5D-Y is feasible with this study population, no specific utility tariff currently exists that reflects the population appropriately in all respects. Prior to a future trial, the available measures and tariffs should be reviewed and a decision taken on whether the EQ-5D-Y is indeed the most appropriate measure.

Data protection regulations relating to the recording of sessions and data storage meant that a researcher had to set up and start all online group sessions. While this was acceptable to facilitators and participants, it necessitated careful co-ordination between the research team and facilitators, reduced flexibility for facilitators and was resource intensive on part of the research team. Further consideration will need to be given to develop appropriate and practical procedures for a larger trial.

Intervention optimisation

The findings from the pilot of the Digital STORM intervention point to a need to consider optimising some aspects of the intervention and the context for its delivery further. While this was only hinted at in the current findings, one issue to consider is whether individuals already engaged in self-advocacy may stand to benefit less from the intervention than those who have had only limited support and skills development required in standing up to stigma. As such, in a future trial, recruitment should seek to include more community groups and education settings that are not specifically related to self-advocacy. Furthermore, a small number of participants in the pilot (particularly some from the specialist college setting) appeared to have little personal experience of stigmatising encounters, similar to those covered in STORM. This might be explained by the context of these participants only accessing the community in the company of a supporter. As this resulted in a more hypothetical engagement with the issues covered, going forward it should be considered whether at least occasional use of community resources without support should be a criterion for participant inclusion.

Storage and display of session materials, such as key messages and summaries, require some refinement. In particular, the use of the Wiki to stream videos should be reconsidered, as should the need for facilitators to use both the Digital STORM manual and the Wiki. As suggested by some facilitators, having the STORM materials in the order set out in the manual on PowerPoint slides, alongside the facility to stream the videos via YouTube may offer a more user-friendly solution. This would certainly avoid some of the technical challenges noted in relation to playing the videos from within the Wiki.

For the action planning, the focus of session 4, feedback indicates that the images in the participant booklet should be reviewed, to ensure they refer more closely to actions implicated in resisting stigma. In addition, options for galvanising others’ support for the implementation of action plans should be considered.

Future trial of the STORM intervention

The present study indicates that the Digital STORM intervention and digital administration of outcome and health economics measures are feasible and acceptable. However, the fact that they were tested in an uncontrolled pilot leaves some questions unanswered. In particular, the question whether randomisation in an RCT design would be acceptable to organisations and participants is as yet unanswered and could be tested in an internal pilot. While retention and data completeness were very good, post-intervention data collection took place around 3 months from baseline and the feasibility of collecting outcome and health economics data 12 months from baseline, as originally intended, is as yet untested.

Given that digital collection of data was very successful, retaining this method of data collection seems indicated for a future trial and similar future studies, due to its reduced costs, convenience and the opportunity to expand the geographical region for the research.

How STORM delivery format, take-up and retention interact with a changing pandemic context is an important matter for further consideration. There were clear arguments for a digital intervention format to not only ensure flexibility at a time of continuing uncertainty but also increase the potential for inclusion of people with intellectual disabilities who live in more rural locations or may be reluctant to venture out after dark during winter months. Going forward, a careful assessment of access to and engagement with the digital and F2F versions of the STORM intervention in changing external circumstances is merited. It is conceivable that groups may choose to start STORM using a F2F delivery format but may need to be prepared to switch to an online format should circumstances require this. Any such transition mid-way through the intervention is likely to require additional preparation and support, and it may well affect facilitator and participant experiences of the intervention as well as delivery costs.

Furthermore, while digital delivery of STORM was found acceptable, feasible and useful in this study, the questions of who digital delivery of this and similar interventions is suitable for and to what extent offering the choice of delivery format is appropriate need further consideration in the context of diverse needs and backgrounds of people with intellectual disabilities.

Notwithstanding these considerations, the present study suggests that with support and adjustments people with intellectual disabilities can participate in online research and interventions. As such, their frequent a priori exclusion from e-health research should be questioned. Furthermore, the success of collecting data digitally in the present study indicates that digital data collection methods should be considered in research with this population and also counter indicate the exclusion of people with mild to moderate intellectual disabilities from digitally conducted studies a priori on the assumption that they would not be able to give valid responses to web-delivered surveys.

Local data protection privacy notice

The controller for this project will be UCL. The UCL Data Protection Officer provides oversight of UCL activities involving the processing of personal data.

This ‘local’ privacy notice sets out the information that applies to this particular study. Further information on how UCL uses participant information can be found in our ‘general’ privacy notice for participants in health and care research studies.

Data will be collected using web-based meeting platforms. The categories of personal data used will be the name of the organisation through which the person participates in this research, name of person, age and gender as well as contact details (to facilitate arranging meetings for the purposes of data collection). The lawful basis that will be used to process this personal data are: ‘Public task’ for personal data and ‘Research purposes’ for special category data. The data will be processed so long as it is required for the research project. If we are able to anonymise or pseudonymise the personal data provided, we will undertake this and will endeavour to minimise the processing of personal data wherever possible.

If you are concerned about how personal data are being processed, or if you would like to contact us about your and/or the rights of the participants you are supporting, please contact a member of the research team in the first instance (contact details on page 1). In addition, the UCL data protection team can also be contacted at dataprotection@ucl.ac.uk should you have any further concerns.

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