*Article* **Relationships of People with Intellectual Disabilities in Times of Pandemic: An Inclusive Study**

**Carolina Puyaltó \* , Maialen Beltran , Tània Coll, Gemma Diaz-Garolera , Marta Figueras, Judit Fullana , Cristina González, Maria Pallisera, Joan Pujolar and Ana Rey**

> Group of Research on Diversity, Institute of Educational Research, University of Girona, 17004 Girona, Spain; maialen.beltran@udg.edu (M.B.); recerca.diversitat@gmail.com (T.C.); gemma.diaz@udg.edu (G.D.-G.); recerca.diversitat1@gmail.com (M.F.); judit.fullana@udg.edu (J.F.); recerca.diversitat2@gmail.com (C.G.); maria.pallisera@udg.edu (M.P.); recerca.diversitat3@gmail.com (J.P.); ana.rey@udg.edu (A.R.) **\*** Correspondence: carolina.puyalto@udg.edu

**Abstract:** (1) Background: Since 2012, our Inclusive Research Team has developed several studies on various topics that interest the co-researchers with intellectual disabilities. In 2021, throughout the COVID-19 pandemic, the co-researchers decided to investigate the impact of the pandemic on the relationships of people with intellectual disabilities. The aim of this article is to disseminate how this inclusive study was developed and to explain its results; (2) Methods: Co-researchers and academic researchers met six times to make different decisions: decide on the research topic; discuss the topic; prepare an interview script for people with intellectual disabilities; analyse the data obtained; and decide how to disseminate the results of the research. The co-researchers interviewed 10 people with intellectual disabilities and participated as facilitators in 3 focus groups; (3) Results: During the pandemic, digital devices have enabled people with intellectual disabilities to maintain their social relationships. However, the lack of access or support in using them, as well as the restrictions imposed on people with intellectual disabilities living in institutions, have presented significant barriers to maintaining their social relationships; (4) Conclusions: This article shows the difficulties people with intellectual disabilities face in maintaining successful social relationships in times of pandemic, and how we undertook research in an inclusive, virtual manner.

**Keywords:** intellectual disabilities; inclusive research; pandemic; relationships

### **1. Introduction**

*1.1. The Advisory Committee of the "Diversity Research Group"*

In 2012, the "Diversity Research Group" constituted an Advisory Committee made up of 10 adults with intellectual disabilities. The objective was to record their opinions and experiences on the transition to adult life, the subject of the research project that was being developed at that time. In this way, a collaborative relationship began in which people with intellectual disabilities advised the researchers and helped them make decisions in the different phases of the study. The richness of the process and the results of this incipient collaboration (Puyaltó et al. 2016) led the group to continue with this collaboration and to increase both its intensity and frequency, developing the three main forms of collaboration recognized in inclusive research (Bigby et al. 2014): advisory actions (for example in a research on transition to adulthood, see Fullana et al. 2016; Pallisera et al. 2015); co-research (for example, in research on independent living, see Pallisera et al. 2017), and leadership of some of the research processes developed (such as life as a couple, see Puyaltó et al. 2019). Rooted in the participatory and emancipatory research paradigms, the inclusive research model (Walmsley 2001, 2004; Walmsley and Johnson 2003) encourages research conducted by people with disabilities and argues that people with relevant experience in relation to the studied topic should be included in the research and their participation facilitated in all

**Citation:** Puyaltó, Carolina, Maialen Beltran, Tània Coll, Gemma Diaz-Garolera, Marta Figueras, Judit Fullana, Cristina González, Maria Pallisera, Joan Pujolar, and Ana Rey. 2022. Relationships of People with Intellectual Disabilities in Times of Pandemic: An Inclusive Study. *Social Sciences* 11: 198. https://doi.org/ 10.3390/socsci11050198

Academic Editor: Patricia O'Brien

Received: 11 January 2022 Accepted: 27 April 2022 Published: 29 April 2022

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phases of it, as a necessary way as a way of respecting their right to actively participate in matters that concern them.

The working procedure followed by the Advisory Committee (AC) is based on monthly meetings (bimonthly in some periods), lasting about three hours, on Thursday afternoons, at the university. Each meeting begins with an informal time of approximately one hour, so that all the participants (researchers and co-researchers) can catch up and have a snack together before starting work. During the meetings, the researchers offer different forms of support to the co-researchers, depending on the objective of each meeting and the type of collaboration carried out: preparation of the meeting material in an accessible format, preparation of accessible minutes, facilitation of the debate sessions, and joint preparation of materials for dissemination of the work carried out, among other forms of support. Most of the meetings have been video recorded by the researchers with the consent of all the co-researchers, something which has made it possible to document the entire process. A total of 35 people has formed part of the AC over almost 10 years. Each academic year, the Committee is composed of between 10 and 12 people. Participation is voluntary, and participants decide about their continuity in the AC depending on their interest and availability.

#### *1.2. The Impact of the COVID-19 Pandemic on Personal Relationships*

The World Health Organization declared COVID-19 a global pandemic on 11 March 2020. Measures such as mobility restrictions and social distancing were adopted in all countries. The government of Spain declared a State of Emergency (Real Decreto 463/2020 2020) as a mechanism to legally impose home confinement measures. Daily life was greatly disrupted, especially between 15 March and 21 June 2020. Since then and during the first six months of 2021, contagion control measures were maintained, entailing restrictions in terms of the number of people in social gatherings and mobility restrictions in the worst moments of the pandemic.

This situation affected university life and, therefore, the activities of the AC, which was affected both in its way of working and the research topics undertaken. The collaboration between the research group and the AC was uninterrupted, but all the activities (the meetings and the application of the instruments) took place online. This adaptation was not without a series of difficulties. These are described in the "Materials and Methods" section of this article.

During the period of confinement, the AC decided to undertake two items of research related to the effects of the COVID-19 pandemic on their lives. The first of them took place from March to July 2020, in a collaborative, inclusive manner (Walmsley et al. 2018), and aimed to explore the impact of the pandemic on the rights of adults with intellectual disabilities. The second, held between February and October 2021, focused on the impact of the pandemic on the personal relationships of people with intellectual disabilities.

From the beginning, concern regarding the impact of the pandemic on the lives of people with disabilities has motivated the issue of resolutions by international organizations. Some of these refer directly to the issue of interpersonal relations (European Union Agency for Fundamental Rights (FRA) 2020; United Nations 2020a, 2020b; UNICEF 2020). The United Nations (2020b) highlights the negative impact of the pandemic on the social inclusion of people with disabilities, both in their participation in the community and in the establishment of personal relationships with their peers. Concern for the well-being of people living in institutions merits special emphasis, due to the seclusion and resulting social isolation that they suffered throughout the pandemic (United Nations 2020a).

A large amount of research has been undertaken that addresses the impact of the pandemic on people with disabilities. The voice of people with intellectual disabilities has hardly been considered in this line of research, with some exceptions; Among the studies that do provide the perspectives of people with intellectual disabilities, we should highlight those of Embregts et al. (2020); Drum et al. (2020), Amor et al. (2021) and McCarron et al. (2020). In the Netherlands, Embregts et al. (2020) explore the experiences of six

people with intellectual disabilities during the emergency period, highlighting the increase in their feelings of loneliness, personal discomfort, and the loss of relationships. Drum et al. (2020) surveyed 2469 adults in the US, 930 of whom have intellectual disabilities, autism, epilepsy, or brain damage. Overall, 66% of those surveyed experienced anxiety or depression due to the pandemic, and 20% reported not being able to access support services. Emotional issues grew among respondents over time as the pandemic continued and lack of services/supports made these problems more acute. McCarron et al. (2020) present the findings of Wave 4 of IDS-TILDA, a longitudinal study conducted in Ireland since 2008 which aims to identify the principal influences on successful ageing in people with intellectual disability in Ireland. Wave 4 of this study coincided with the pandemic period and included a COVID-19 questionnaire that was administered to 710 participants with intellectual disability. Some of the main findings indicate that more than half of the participants (55%) indicated stress or anxiety due to pandemic and that the most common cause of it was not being able to do usual activities, not seeing friends/family, loneliness/isolation, and fear of getting COVID-19. Even though people living independently or with family were more likely to report missing friends than those living in residential care or community group homes. Finally, Amor et al. (2021), also explored the perceptions of 582 people with intellectual disabilities during the lockdown in Spain through a questionnaire in which information was collected in relation to: access to information, emotional experiences, effects on living conditions and access to support. The participants reported difficulties on an emotional level, as well as problems to continue working or training. In research as a whole, it can be observed that the subject of relationships has hardly been studied in the research on the impact of COVID-19 on the lives of people with intellectual disabilities.

The objective of this article is twofold: on the one hand, to disseminate how we carried out this inclusive study; and on the other, to provide information on a significant issue for people's lives, focusing on the barriers they have encountered to maintaining their personal relationships and to make proposals for improvements.

In this inclusive study, the role of the academic researchers has been to support the co-researchers throughout the research process. They were supported in choosing, exploring, and discussing the topic, collecting data on the topic through interviews and discussion groups, and analysing the results obtained. The academic researchers were also responsible for organizing the working meetings held with the co-researchers. This article was written mainly by the academic researchers after holding two working meetings with the co-researchers at the end of the research process with the aim of including their voices in this article. In the first meeting, after positively evaluating the possibility of publishing this article and its implications, the co-researchers reviewed the research process carried out and assessed different elements (study topic, methods used, current situation regarding the study topic, etc.). Their evaluations were later analysed by the researchers and included in the article in the form of vignettes. In the second meeting, the researchers presented the different sections of the article to the co-researchers in an accessible format in order to assess their content. They were also shown their contributions in the different sections so that they could decide whether they agreed to include them. Finally, they decided if they wanted to use pseudonyms and if they wanted to participate as authors of the article. The co-researchers agreed with the information provided in the article, they decided to include all the vignettes proposed by the researchers that included their points of view; and they chose their own pseudonyms—these appear in the vignettes that expose comments made by the co-researchers on different topics, such as the methods used in the research ("Materials and Methods" section) or the importance of researching on interpersonal relationships in times of pandemic ("Discussion" section).

#### **2. Materials and Methods**

Between September 2020 and June 2021, 11 co-researchers, 6 women and 5 men, aged between 18 and 60, formed part of the Advisory Committee (AC) of the Research Group.

Three of these people joined the Advisory Committee for the first time. The AC had the support of five researchers and a master's student, who were in charge of facilitating the work sessions, taking a note of the agreements reached, helping in the elaboration of the information collection instruments, and providing support to the processes of information gathering and data analysis. Three of these people joined the Advisory Committee for the first time. The AC had the support of five researchers and a master's student, who were in charge of facilitating the work sessions, taking a note of the agreements reached, helping in the elaboration of the information collection instruments, and providing support to the processes of information gathering and data analysis.

Between September 2020 and June 2021, 11 co-researchers, 6 women and 5 men, aged between 18 and 60, formed part of the Advisory Committee (AC) of the Research Group.

*Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 4 of 16

**2. Materials and Methods** 

The research was carried out between February and October 2021. Due to the restrictions derived from the COVID-19 pandemic, the work was carried out online, which meant a different way of working compared to what used to be the normal operation of the AC (Figure 1, box 1). The videoconference meetings had the virtue of maintaining the activity of the AC during the time of restrictions (Figure 1, box 2), although technical problems had to be solved (connection, audio, etc.) (Figure 1, box 3) that conditioned some decisions, for example, to work on some phases of the process in small groups in order to facilitate communication between the co-researchers (Figure 1, box 4). The research was carried out between February and October 2021. Due to the restrictions derived from the COVID-19 pandemic, the work was carried out online, which meant a different way of working compared to what used to be the normal operation of the AC (Figure 1, box 1). The videoconference meetings had the virtue of maintaining the activity of the AC during the time of restrictions (Figure 1, box 2), although technical problems had to be solved (connection, audio, etc.) (Figure 1, box 3) that conditioned some decisions, for example, to work on some phases of the process in small groups in order to facilitate communication between the co-researchers (Figure 1, box 4).

#### **Figure 1.** Co-researchers' opinions 1–4. **Figure 1.** Co-researchers' opinions 1–4.

The process began with a meeting in which possible topics for research were discussed. In this first meeting, the co-researchers were presented and, through a discussion facilitated by one of the researchers, the concerns, themes, and questions that could be the subject of a more in-depth analysis through an inclusive research process were explored. The AC decided to focus its work on social relationships and friendships and how these relationships were affected by the pandemic (Figure 2). The process began with a meeting in which possible topics for research were discussed. In this first meeting, the co-researchers were presented and, through a discussion facilitated by one of the researchers, the concerns, themes, and questions that could be the subject of a more in-depth analysis through an inclusive research process were explored. The AC decided to focus its work on social relationships and friendships and how these relationships were affected by the pandemic (Figure 2). *Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 5 of 16

> The second meeting aimed to explore the experiences of the co-researchers on the research topic. For this reason, two groups were organized working in parallel, with the

> find in establishing friendships and what or who helps them to establish and maintain these relationships. Part of the debate was dedicated to analysing how the restrictions due to the COVID-19 pandemic were affecting family, friendships, and relationships with partners. The role of new technologies in the pandemic situation in terms of maintaining social relations was also explored. After this analysis, the two working groups showed interest in knowing what other people with intellectual disabilities thought about this issue, so the possibility of conducting interviews was proposed. It was agreed that two

people from each group would be in charge of preparing a script for an interview.

facilitate subsequent analysis and discussion with the Advisory Committee.

In a third meeting, 4 co-researchers with the support of 4 researchers prepared the interview script that included topics such as the type of relationships the person has, the difficulties and supports to make friends, the impact of the pandemic on their own relationships, and the use of new technologies to interact. The team jointly decided on the procedure for collecting the information, including the informed consent of the

Throughout the agreed period, the same 4 co-researchers were in charge of conducting the interviews with some of their acquaintances. They contacted them via WhatsApp and phone calls to inform them about the research and to ask if they would be interested in participating in a virtual interview. Most interviews were carried out through the WhatsApp application audio recording tool. Each co-researcher recorded the questions in audio and sent them to one of his acquaintances with whom he or she had previously agreed to conduct the interview (Figure 3). Before starting the interviews, each participant was informed of the purpose of the research and that his or her anonymity would be guaranteed. Participants were also informed that they were free to answer only the questions they wanted to and could leave the interview at any time if they so wished and their responses would not be used for the project. The person's consent to participate was orally recorded, due to the virtual format. Data were collected from 10 people with intellectual disabilities aged between 18 and 60 years old, of whom 3 lived in group homes and 7 with their parents. The recordings were sent to two of the researchers, who did the transcription of the audio interview tapes. A third researcher analysed the interviews through thematic analysis (Nowell et al. 2017). It was performed question by question. The answers to each question were categorized by topic and summarized in bar charts to

#### **Figure 2.** Co-researcher's opinion 5. **Figure 2.** Co-researcher's opinion 5.

participants.

The second meeting aimed to explore the experiences of the co-researchers on the research topic. For this reason, two groups were organized working in parallel, with the support of three researchers. Each group was set up as a focus group and they debated about who they usually interact with, what is the role of friends, what difficulties they find in establishing friendships and what or who helps them to establish and maintain these relationships. Part of the debate was dedicated to analysing how the restrictions due to the COVID-19 pandemic were affecting family, friendships, and relationships with partners. The role of new technologies in the pandemic situation in terms of maintaining social relations was also explored. After this analysis, the two working groups showed interest in knowing what other people with intellectual disabilities thought about this issue, so the possibility of conducting interviews was proposed. It was agreed that two people from each group would be in charge of preparing a script for an interview.

In a third meeting, 4 co-researchers with the support of 4 researchers prepared the interview script that included topics such as the type of relationships the person has, the difficulties and supports to make friends, the impact of the pandemic on their own relationships, and the use of new technologies to interact. The team jointly decided on the procedure for collecting the information, including the informed consent of the participants.

Throughout the agreed period, the same 4 co-researchers were in charge of conducting the interviews with some of their acquaintances. They contacted them via WhatsApp and phone calls to inform them about the research and to ask if they would be interested in participating in a virtual interview. Most interviews were carried out through the WhatsApp application audio recording tool. Each co-researcher recorded the questions in audio and sent them to one of his acquaintances with whom he or she had previously agreed to conduct the interview (Figure 3). Before starting the interviews, each participant was informed of the purpose of the research and that his or her anonymity would be guaranteed. Participants were also informed that they were free to answer only the questions they wanted to and could leave the interview at any time if they so wished and their responses would not be used for the project. The person's consent to participate was orally recorded, due to the virtual format. Data were collected from 10 people with intellectual disabilities aged between 18 and 60 years old, of whom 3 lived in group homes and 7 with their parents. The recordings were sent to two of the researchers, who did the transcription of the audio interview tapes. A third researcher analysed the interviews through thematic analysis (Nowell et al. 2017). It was performed question by question. The answers to each question were categorized by topic and summarized in bar charts to facilitate subsequent analysis and discussion with the Advisory Committee. *Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 6 of 16

Advisory Committee in the fifth meeting.

groups.

**Figure 3.** Co-researchers' opinions 6, 7. **Figure 3.** Co-researchers' opinions 6, 7.

In a fourth meeting, the results of the 10 interviews with the co-researchers, who worked in two groups, were presented and analysed. Specifically, the researchers

The researchers contacted three groups: two groups of self-advocates and a recently created inclusive research group. An accessible e-mail was sent to these groups to explain the aims of the research and request their collaboration in participating in a virtual focus group. All three groups accepted the invitation. In focus group 1, 9 people who made up a group of self-advocates participated. Focus group 2 was carried out with another group of self-advocates in which 11 people participated, and focus group 3 with an inclusive research group made up of 7 co-researchers. Each focus group was facilitated by one of the co-researchers, with the support of two or three researchers (Figure 4). The three focus groups were carried out via videoconference, the same topics were discussed as in the interviews, and the consent of the participants was obtained from all of them, in oral format due to the videoconference process itself. The same procedure was followed to request consent as in the interviews. Once finished, two researchers did the transcription followed by thematic analysis. This analysis was presented and discussed with the

bar charts how often each topic was repeated by the interviewees. Presenting the results in this way made easier for the co-researchers to analyse and discuss the results. During this analysis process, the researchers took note of which topics the co-researchers considered most relevant. These topics were: the value of friendship, the difficulty of making friends without a disability, the importance of new technologies for maintaining relationships, the difficulty of living without physical contact and the lack of freedom to move and see your beloved ones. At the end of the meeting, the researchers proposed to explore the research topic a little more and the idea of holding a focus group with other people with intellectual disabilities arose. Through conducting focus groups, it was intended to obtain more information and, in this way, improve the validity of the results found to date. Two co-researchers showed interest in participating as facilitators of these

In a fourth meeting, the results of the 10 interviews with the co-researchers, who worked in two groups, were presented and analysed. Specifically, the researchers presented the main topics that came up in each question of the interview, indicating in bar charts how often each topic was repeated by the interviewees. Presenting the results in this way made easier for the co-researchers to analyse and discuss the results. During this analysis process, the researchers took note of which topics the co-researchers considered most relevant. These topics were: the value of friendship, the difficulty of making friends without a disability, the importance of new technologies for maintaining relationships, the difficulty of living without physical contact and the lack of freedom to move and see your beloved ones. At the end of the meeting, the researchers proposed to explore the research topic a little more and the idea of holding a focus group with other people with intellectual disabilities arose. Through conducting focus groups, it was intended to obtain more information and, in this way, improve the validity of the results found to date. Two co-researchers showed interest in participating as facilitators of these groups.

The researchers contacted three groups: two groups of self-advocates and a recently created inclusive research group. An accessible e-mail was sent to these groups to explain the aims of the research and request their collaboration in participating in a virtual focus group. All three groups accepted the invitation. In focus group 1, 9 people who made up a group of self-advocates participated. Focus group 2 was carried out with another group of self-advocates in which 11 people participated, and focus group 3 with an inclusive research group made up of 7 co-researchers. Each focus group was facilitated by one of the coresearchers, with the support of two or three researchers (Figure 4). The three focus groups were carried out via videoconference, the same topics were discussed as in the interviews, and the consent of the participants was obtained from all of them, in oral format due to the videoconference process itself. The same procedure was followed to request consent as in the interviews. Once finished, two researchers did the transcription followed by thematic analysis. This analysis was presented and discussed with the Advisory Committee in the fifth meeting. *Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 7 of 16

**Figure 4.** Co-researcher's opinions 8, 9. **Figure 4.** Co-researcher's opinions 8, 9.

the co-researchers.

**Main Topics Categories**

1. The relationships of people with intellectual

2. The opportunities and threats to relationships in

3. The impact of the pandemic on the relationships of people with intellectual disabilities who live in

disabilities before the pandemic

times of pandemic

group homes

Finally, in order to discuss the results of the focus groups and prepare this article for publication, two working meetings were held with the co-researchers. In meeting 5, 3 coresearchers, with the support of 4 researchers, analysed together the main topics extracted from the focus groups. In that case, to guide the discussion, the summary of the topics Finally, in order to discuss the results of the focus groups and prepare this article for publication, two working meetings were held with the co-researchers. In meeting 5, 3 coresearchers, with the support of 4 researchers, analysed together the main topics extracted from the focus groups. In that case, to guide the discussion, the summary of the topics

was accompanied by some excerpts from the focus groups. This procedure made it easier

situation experienced by people with intellectual disabilities living in group homes during the pandemic. Thanks to the contributions made by the co-researchers during the analysis of the interviews (meeting 4) and the focus groups (meeting 5), the researchers were able to establish a list of final categories and main topics, which are included in Table 1. After discussing the results of the study, co-researchers evaluated the possibility of publishing an article and the research writing process developed. From this meeting, the researchers were able to make headway in the draft of the article incorporating the contributions of

**Table 1.** Main topics and categories derived from the analysis of the interviews and focus groups.

• Relationship circles • Benefits of relationships

• Social isolation

• Limitations and challenges of relationships

• Restrictions to maintain relationships

• New ways of communicating • The need of physical contact

• Restrictions in group homes

• Human rights violation

In the sixth meeting, the researchers presented the different sections of the article to the co-researchers in an accessible format in order to assess their content. They were also shown their contributions in the different sections so that they could assess whether they was accompanied by some excerpts from the focus groups. This procedure made it easier for co-researchers to analyse and discuss topics that seemed most important to them. On this occasion, the co-researchers considered that much importance should be given to the situation experienced by people with intellectual disabilities living in group homes during the pandemic. Thanks to the contributions made by the co-researchers during the analysis of the interviews (meeting 4) and the focus groups (meeting 5), the researchers were able to establish a list of final categories and main topics, which are included in Table 1. After discussing the results of the study, co-researchers evaluated the possibility of publishing an article and the research writing process developed. From this meeting, the researchers were able to make headway in the draft of the article incorporating the contributions of the co-researchers.



In the sixth meeting, the researchers presented the different sections of the article to the co-researchers in an accessible format in order to assess their content. They were also shown their contributions in the different sections so that they could assess whether they agreed to include them. Finally, they decided if they wanted to use pseudonyms in the vignettes that show their opinions and if they wanted to participate as authors of the article.

Table 2 summarizes the process followed to develop the research and prepare this article.

This research was part of a larger project that was ethical approved and authorized by the Spanish State Research Agency who funded the project (protocol code EDU2017- 84989-R). Accessible information about the research was provided to all participants and, once they agreed to participate, they gave their consent. Due to the pandemic situation, the informed consents were recorded orally. Data protection legislation was followed throughout the study (Spanish Organic Law on Data Protection 3/2018 and the Regulation (EU) 2016/679 of the European Parliament and the Council, 27 April 2016).


**Table 2.** Synopsis of the process followed to carry out the research and prepare the article.

#### **3. Results**

The aim of the research was to determine the opinions of people with intellectual disabilities on the impact of the pandemic on their social relationships. The results presented below derive from the analysis of the information obtained in the three focus groups and in the 10 interviews conducted by the co-researchers. These results are organized around three main themes: the relationships of people with intellectual disabilities before the pandemic, the opportunities and threats to relationships in times of pandemic, and the impact of the pandemic on the relationships of people with intellectual disabilities who live in group homes. To illustrate these issues, verbatim quotes from people with intellectual disabilities are included. All participant names have been changed to pseudonyms.

#### *3.1. Pre-Pandemic Relationships*

The people interviewed and those who participated in the focus groups revealed that the people with whom they usually interact, beyond the family nucleus, are friends with disabilities with whom they share leisure, work, or training activities, and with the professionals who work in organizations that provide them services. Most participants agreed that friends are a valuable source of help. Of the 10 people with intellectual disabilities interviewed, 8 thought that friends can help to understand situations. Three people considered that, in addition, friends help to have fun and overcome problematic and/or conflictive situations. According to the participants of the focus groups, friendship also teaches you to take care of others and be interested in them and put yourself in their place. They agreed that friends help to have fun and be happy. All the participants emphasised that friendship is based on reciprocity.

Lucy: *My friends help me, and I help my friends. They ask me how I am, how my family is and so on. Also, if sometimes I don't know how to say something, they help me.* (FG2)

All the participants reflected on the difficulties they find in establishing friendships. Most of the people interviewed highlighted the fact of not feeling accepted by others (9 out of 10), feeling different and little understood (8 out of 10). Half of the people interviewed considered that people with intellectual disabilities tend to be seen as inferior by the rest of society.

Rose: *Well, before I had a hard time relating, making friends, and for people to accept me, regardless of whether I had a disability or not, because many people did not understand what I was explaining (* . . . *). Just because of having a little disability, people have a hard time accepting it.* (Interview 9, 27 years old)

In the focus groups, it stood out that difficulties in establishing friendships with people without disabilities may be due to other factors such as: having attended a special school and having only related to people with disabilities; the lack of trust that people with disabilities themselves experience towards people without disabilities—especially those who have been victims of bullying; the fear of feeling rejected; and the lack of knowledge and understanding that people without disabilities have about intellectual disability.

Arturo: *I interact with the monitors at the centre, with friends, family... with friends from here in the town, no, because I get along very badly with them. I get along better with those in the occupational centre, because they are (people) with disabilities, just like us. Because the non-disabled mess with you, you know? That is why I interact with people from the occupational centre, or with the family: people who love me.* (FG3)

Paula: *It is true that we relate more to our environment than to other people. Because they don't know how to act with us. So, it is a bit difficult to make friends with people who do not have disabilities. You need to realise that those of us with disabilities do not have friends who do not have disabilities.* (FG3)

#### *3.2. Relating in Times of Pandemic: An Opportunity or a Threat?*

The pandemic has had a direct impact at different levels on the friendships of people with intellectual disabilities. Some people interviewed emphasised that the pandemic has caused important restrictions, such as not being able to see friends (5 out of 10), their partner (3 out of 10) and some relatives (4 out of 10), especially when they are not part of their own circle of cohabitation.

Regarding the way of relating, online communication was highlighted as one of the main changes that the pandemic has brought about. The physical distancing imposed during home confinement led to increased use of mobile devices and computers in order to maintain contact and communicate with others.

Participants in the focus groups and interviews explained that they had to learn to use applications and platforms such as WhatsApp, Meet, Skype, or Zoom. They positively valued that this learning, in most cases, facilitated by family members and support professionals, allowed them to maintain contact with their friends and family, and continue with their training online.

Gina: *Yes, yes, they have helped me, especially in the foundation to know how a Meet works, or a Zoom or at home they have also been helping me: "look, this is used like this or this like this". To know how to communicate, because in the future I know how to do it better, know how to use them better and not depend so much on other people.* (Interview, 27 years old)

Even so, they stressed that this has not represented a learning opportunity for all people with intellectual disabilities since not all have devices that allow them to access these types of applications and communication platforms, or if they do, they do not all have the necessary support to learn to use them.

Paula: *There are friends from the centre who we cannot see, because they do not have electronic devices. And this is a barrier. Or they don't have an internet connection. Or their parents are older and cannot help them.* (FG3)

In any case, most of the participants agreed that, despite the fact that technology has allowed them to maintain their friendship and partner relationships, they have not been able to meet the need to maintain physical contact with the people they appreciate. In fact, various participants agree that, in the wake of the pandemic, relationships have become considerably dehumanized and have cooled. This has caused distress in some cases and in others, it has posed new challenges such as that of being able to once again experience physical contact with people who were close.

Natalia: *Virtually, you can see your friends and talk to them, and that's fine... But you only see their faces, you can't touch them or hug them... This made me sad.* (FG3)

Martin: *The truth is that it makes me feel strange to be touched after so long...* (FG1)

#### *3.3. Living in Institutions in Times of Pandemic: The Impact on Social Relationships*

Although most of the people who participated in the interviews and focus groups live with their families, some live in group homes with other people with disabilities and their support professionals. In these cases, people reported having suffered the effects of the restrictions derived from the pandemic, as well as those imposed by the organizations where they live.

People living in group homes explained that their home confinement was longer than that of the general population. In fact, some of they were confined to group homes for—more than a year—the general population was confined for approximately three months—and with limited mobility to essential activities, such as going to the doctor and other specific actions. This restrictive measure was established during the beginning of the confinement and according to the participants it was imposed to protect them and the support professionals from possible infections. One of the effects of this measure has been social isolation and restriction of freedom of movement.

Joseph: *I have not been able to see my partner for a year. She lives in another group home.* (FG1)

Miguel: *(The confinement) has affected me emotionally, I miss my partner, my family and my friends who do not live in the group home. I hope everything returns to normal...* (Interview, 60 years old)

The participants explained that their activities were also stopped in the day centres, although this was only done for those people who resided in group homes, which meant that the possibilities of social interaction were even more limited for them.

One of the consequences that the pandemic has had for residents of group homes is that activities outside the group home had to be carried out in groups with the accompaniment of a support professional. For the research participants who lived in group homes, this has meant an increase in the already usual restrictions of the institutions since it has led to the loss of contact with friends and family and the loss of autonomy to be able to carry out activities with them. All this has caused a feeling of distress in the residents of the group homes, who denounce that they have regressed in the exercise of some of their rights, such as making their own decisions or moving freely.

During the last meeting with the Advisory Committee (Meeting 5), two co-researchers living in a group home highlighted the fact that, a year and a half after the pandemic began, some of the results obtained, and described above, on the restrictions on interaction that people with intellectual disabilities experience in the institutions are still in force. This continues to occur despite the fact that almost all restrictions—except for the use of a mask in closed spaces—have now been withdrawn by the administration. In this sense, the co-researchers report that they continue to experience difficulties in meeting their partners and in moving freely outside their home.

Jordi: *They still won't let us go out alone. They only let us out to come to the university. We have to be accompanied by monitors, like dogs. (* . . . *) They are taking away the freedom we had, that's how I see it.* (Meeting 5)

According to the co-researchers, these restrictions not only have negative consequences on their freedom, but also contribute to people with intellectual disabilities being singled out and stigmatized against by their communities.

Jordi: *Now they talk about us behind our backs, because we go everywhere with a monitor. Before they would stop you on the street and talk to you, but now they look at us badly because we are accompanied.* (Meeting 5)

Rosa: *Sometimes people say "look, she is stupid..." (for going in a group with a monitor). Not before, but now they look at us on the street.* (Meeting 5)

#### **4. Discussion**

The situation arising from the COVID-19 pandemic has imposed restrictions on society as a whole in relation to physical encounters, and has required the use of technical resources for communication that have had a significant impact on people's lives. In this context, people with intellectual disabilities have seen their opportunities to meet, organize, debate and report violations of their rights restricted. The objective of this study was to explore the impact that the pandemic had on the relationships of people with intellectual disabilities and to provide information on how this inclusive research was developed. According to Amor et al. (2021), it is necessary to listen to the voice of people with intellectual disabilities so that they express their needs and experiences regarding the COVID-19 pandemic.

One of the main findings of this study is the impact that the pandemic has had on the way of maintaining contact with other people. The participants of this study highlighted the need they had to use digital tools to be able to communicate with their friends and family during confinement. Although they valued their learning very positively, the use of technology did not represent a relationship opportunity for all people with intellectual disabilities, since not all had the necessary technological material or support to use it. In addition, the participants also pointed out that, although they were able to maintain contact with some people online, this contact was cold and dehumanized. Seeing friends and loved ones in person, or hugging and kissing them, are some of the things they missed the most. For most participants, physical contact is essential for relationships.

Another result that should be noted in this study is the social isolation that the participants in this study reported having suffered from not being able to see friends, partners, and/or some relatives, coinciding with the results of the research by Embregts et al. (2020) and McCarron et al. (2020). Additionally, in Amor et al. (2021), participants reported missing someone during the lockdown. In addition, the participants of this study also reported the loss of their work, occupational or training activity as another aspect that greatly affected them. This coincides with the accounts of those interviewed by Embregts et al. (2020) and those surveyed by McCarron et al. (2020) and Amor et al. (2021).

One of the significant effects of the pandemic has undoubtedly been on the mental health of the population. More than half of the participants in research undertaken by McCarron et al. (2020) and Drum et al. (2020) experienced anxiety or depression due to the

pandemic and its restrictions and, as Drum and colleagues pointed out, these emotional problems could continue to increase. In our study, emotional or mental health problems were not directly mentioned, however, the participants expressed their unhappiness at the fact that, almost two years after the onset of the pandemic, people with intellectual disabilities who live in group homes continued to have both relational and social restrictions, in addition to restrictions with mobility and social participation, in their day to day lives, despite the fact that the administrations already made measures more flexible for the population as a whole. A displeasure that is strictly related to a significant setback in the exercise of their basic rights, such as the right to mobility, assembly or independent living. Furthermore, it has been demonstrated that isolation and loneliness can be related to depression (Aanes et al. 2010), while, on the contrary, participation in society is related to low levels of depression, stress or anxiety (Ward et al. 2013). These data are relevant if it is taken into account that people with intellectual disabilities constitute a group with a high prevalence of mental health disorders, which is why they may present a greater need for help and/or support than the general population (Amor et al. 2021).

In Spain, research on the effects of the pandemic and confinement on the lives of people with intellectual disabilities has been very limited compared to existing international studies (Amor et al. 2021). Furthermore, no Spanish studies were found that analyse the effects of the pandemic from the perspective of people with intellectual disabilities themselves. As stated by Amor et al. (2021), the lack of research in this regard is worrying, since Spain was one of the countries most affected by COVID-19 in 2020. In addition, specifically the impact that the pandemic has had on the relationships of people with intellectual disabilities has been very little studied, unlike its impact on labour inclusion, access to education, health, or information, among others. Additionally, although the emotional impact of the pandemic has been studied, its influence on social isolation, loneliness, loss of friends, and difficulties in maintaining relationships encountered by people with intellectual disabilities has hardly been analysed. This is especially worrying considering that, as previous literature warned, people with intellectual disabilities tend to experience greater social isolation as well as significant barriers to establishing and maintaining satisfactory social relationships (Gilmore and Cuskelly 2014; Callus 2017). According to Duggan and Linehan (2013), some of these barriers are due not only to the lack of natural supports (family, friends, or neighbours) or the difficulty of making friendships, but also to the lack of involvement of service professionals in supporting people with intellectual disabilities to improve their social networks. In this regard, Sullivan et al. (2015) point out that the attitudes of professionals and their overprotective behaviour towards people with intellectual disabilities must be considered. They also emphasize the importance of professionals being aware of the extent to which the organization can limit or facilitate the opportunities of people with intellectual disabilities to establish satisfactory social relationships. These results and those of our research could indicate that the pandemic could have worsened a long-standing issue: the lack of support that people with intellectual disabilities experience to establish and maintain valuable relationships and participate in their communities.

This study makes an addition to the limited research that explores the perception of people with intellectual disabilities regarding the effects and consequences that the pandemic has had on their lives. It is relevant to consider the impact of COVID-19 on the relationships of people with intellectual disabilities if we take into account that the participants mentioned that friends were a valuable source of support, both to overcome complicated situations and to promote and maintain good emotional health. In this sense, the results of this research show that some people with intellectual disabilities continue to experience difficulties in overcoming the social isolation that the pandemic has caused in many cases, either due to lack of access to technologies that facilitate communication and/or the lack of support to use them, or because of the strict restrictive measures that are being applied to people with intellectual disabilities who live in residential institutions, such as group homes. In all these cases, there is a patent lack of support that should respond better

to the needs of people with intellectual disabilities and that would guarantee the exercise of their rights, especially in times of pandemic. Following on in this line of argument, we consider that it is an urgent matter to investigate the situation experienced by people with intellectual disabilities who are institutionalized, in group homes and residences (Verdugo et al. 2009; Huete et al. 2015; Puyaltó and Pallisera 2018), and specify what type of support is necessary to avoid their isolation and guarantee their rights, in a context in which the risk of contagion is imposed on their routines. According to the European Commission (2009), institutionalization refers to any residential care where: "users are isolated from the broader community and/or compelled to live together; these users do not have sufficient control over their lives and over decisions which affect them; and the requirements of the organisation itself tend to take precedence over the users' individualised need" (p. 9).

This research was promoted by co-researchers with intellectual disabilities with the support of researchers. The impossibility of holding meetings in person during the development of the research forced all participants to adopt an online work format. The online situation led the research team to explore new ways of working, such as dividing into small simultaneous work groups or using WhatsApp to conduct interviews, among others, which were positively valued by co-researchers. These strategies coincide with those proposed by Miller and Heumen (2021) to successfully conduct inclusive research online. They highlighted the importance of using online platforms with which the co-researchers are familiar, offering them support in the use these platforms, adapting the format and timing of the meetings, or using accessible data collection strategies, as was performed in this study. Even so, it is necessary to remember that, in our study, all the co-researchers had access to the technology and received support regarding to use it, so the barriers they encountered to participate in the study were minimal.

In relation to the subject of this research, the co-researchers emphasized the importance of personal relationships and the seriousness of social isolation; a feeling of loneliness that some of the co-researchers claimed to have felt. Co-researchers also reported that the restrictions imposed during the toughest times of the pandemic are still in force for many of them, especially those who reside in institutions, and that it is necessary to report the rights they have lost, such as being able to go alone to different places, being able to choose which leisure activities to carry out during their day to day lives, or going to friends' houses to eat, among others. In any case, they considered that participating in this research has allowed them to better understand the situation they are experiencing and, in some cases, make decisions about their lives based on the knowledge acquired (Figure 5). *Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 14 of 16 in force for many of them, especially those who reside in institutions, and that it is necessary to report the rights they have lost, such as being able to go alone to different places, being able to choose which leisure activities to carry out during their day to day lives, or going to friends' houses to eat, among others. In any case, they considered that participating in this research has allowed them to better understand the situation they are experiencing and, in some cases, make decisions about their lives based on the knowledge acquired (Figure 5).

**Figure 5.** Co-researcher's opinion 10. **Figure 5.** Co-researcher's opinion 10.

**Figure 7.** Co-researcher's opinion 12.

Some co-researchers valued this inclusive research experience as an opportunity to make their role as researchers and the situations that people with intellectual disabilities have experienced during the pandemic known to society (Figure 6). In general, the entire team agreed that inclusive research has had an impact that goes beyond traditional research. Not only it allows us to share experiences and opinions between academics, nonacademics and people of different ages and backgrounds, and learn from each other, but also to socialize and feel understood during a difficult time such as a pandemic. Some co-researchers valued this inclusive research experience as an opportunity to make their role as researchers and the situations that people with intellectual disabilities have experienced during the pandemic known to society (Figure 6). In general, the entire team agreed that inclusive research has had an impact that goes beyond traditional research. Not only it allows us to share experiences and opinions between academics, non-academics and people of different ages and backgrounds, and learn from each other, but also to socialize and feel understood during a difficult time such as a pandemic.

Finally, the co-researchers expressed the desire and willingness to continue conducting research (Figure 7). Some of the topics that interest them are community participation and the freedoms they possess and/or do not possess. They are aware that, as far as possible, conducting the research in person would be more suitable, since it would allow them to see each other, communicate and understand each other better.

The research carried out has some limitations. First, the small number of people who participated in the interviews and focus groups. Altogether, there were 37 people, a small sample of people with intellectual disabilities. In addition, the sample does not include people with greater support needs, so the consequences of the pandemic in the personal relationships of this sector of the population have not been addressed by this research. Despite these limitations, we wish to point out that the aim of this inclusive research did not seek to generalize the results. It started from an interest of the advisory committee

**Figure 6.** Co-researcher's opinion 11. **Figure 6.** Co-researcher's opinion 11. **Figure 6.** Co-researcher's opinion 11.

**Figure 5.** Co-researcher's opinion 10.

**Figure 5.** Co-researcher's opinion 10.

acquired (Figure 5).

acquired (Figure 5).

Finally, the co-researchers expressed the desire and willingness to continue conducting research (Figure 7). Some of the topics that interest them are community participation and the freedoms they possess and/or do not possess. They are aware that, as far as possible, conducting the research in person would be more suitable, since it would allow them to see each other, communicate and understand each other better. Finally, the co-researchers expressed the desire and willingness to continue conducting research (Figure 7). Some of the topics that interest them are community participation and the freedoms they possess and/or do not possess. They are aware that, as far as possible, conducting the research in person would be more suitable, since it would allow them to see each other, communicate and understand each other better. Finally, the co-researchers expressed the desire and willingness to continue conducting research (Figure 7). Some of the topics that interest them are community participation and the freedoms they possess and/or do not possess. They are aware that, as far as possible, conducting the research in person would be more suitable, since it would allow them to see each other, communicate and understand each other better.

in force for many of them, especially those who reside in institutions, and that it is necessary to report the rights they have lost, such as being able to go alone to different places, being able to choose which leisure activities to carry out during their day to day lives, or going to friends' houses to eat, among others. In any case, they considered that participating in this research has allowed them to better understand the situation they are experiencing and, in some cases, make decisions about their lives based on the knowledge

in force for many of them, especially those who reside in institutions, and that it is necessary to report the rights they have lost, such as being able to go alone to different places, being able to choose which leisure activities to carry out during their day to day lives, or going to friends' houses to eat, among others. In any case, they considered that participating in this research has allowed them to better understand the situation they are experiencing and, in some cases, make decisions about their lives based on the knowledge

*Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 14 of 16

Some co-researchers valued this inclusive research experience as an opportunity to make their role as researchers and the situations that people with intellectual disabilities have experienced during the pandemic known to society (Figure 6). In general, the entire team agreed that inclusive research has had an impact that goes beyond traditional research. Not only it allows us to share experiences and opinions between academics, nonacademics and people of different ages and backgrounds, and learn from each other, but

Some co-researchers valued this inclusive research experience as an opportunity to make their role as researchers and the situations that people with intellectual disabilities have experienced during the pandemic known to society (Figure 6). In general, the entire team agreed that inclusive research has had an impact that goes beyond traditional research. Not only it allows us to share experiences and opinions between academics, nonacademics and people of different ages and backgrounds, and learn from each other, but

also to socialize and feel understood during a difficult time such as a pandemic.

also to socialize and feel understood during a difficult time such as a pandemic.

**Figure 7.** Co-researcher's opinion 12. **Figure 7.** Co-researcher's opinion 12. **Figure 7.** Co-researcher's opinion 12.

The research carried out has some limitations. First, the small number of people who participated in the interviews and focus groups. Altogether, there were 37 people, a small sample of people with intellectual disabilities. In addition, the sample does not include people with greater support needs, so the consequences of the pandemic in the personal relationships of this sector of the population have not been addressed by this research. Despite these limitations, we wish to point out that the aim of this inclusive research did not seek to generalize the results. It started from an interest of the advisory committee The research carried out has some limitations. First, the small number of people who participated in the interviews and focus groups. Altogether, there were 37 people, a small sample of people with intellectual disabilities. In addition, the sample does not include people with greater support needs, so the consequences of the pandemic in the personal relationships of this sector of the population have not been addressed by this research. Despite these limitations, we wish to point out that the aim of this inclusive research did not seek to generalize the results. It started from an interest of the advisory committee The research carried out has some limitations. First, the small number of people who participated in the interviews and focus groups. Altogether, there were 37 people, a small sample of people with intellectual disabilities. In addition, the sample does not include people with greater support needs, so the consequences of the pandemic in the personal relationships of this sector of the population have not been addressed by this research. Despite these limitations, we wish to point out that the aim of this inclusive research did not seek to generalize the results. It started from an interest of the advisory committee itself and contributed to the participants exploring their situation and that of other people with intellectual disabilities, becoming aware of the consequences of the pandemic on their social relationships. The process aroused their interest in disseminating the results, as a result of which the article presented has been written.

**Author Contributions:** Conceptualization, M.P., C.P., G.D.-G.; methodology, J.F., M.B., T.C., M.F., J.P. and A.R.; formal analysis, C.P.; investigation, all the authors; writing—original draft preparation, C.P.; writing—review and editing, C.P.; supervision and funding acquisition, M.P. and J.F. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research was funded by Ministerio de Ciencia e Innovación. Reference number: EDU2017-84989-R.

**Institutional Review Board Statement:** Ethical review and approval were obtained through the approval of the research project funding by the Spanish Research Agency (Reference number: EDU2017- 84989-R).

**Informed Consent Statement:** Informed consent was obtained for all subjects involved in the study.

**Data Availability Statement:** Not applicable.

**Acknowledgments:** The authors would like to express sincere gratitude to all the participants of the interviews and focus groups for their time and contribution, to all the co-researchers that collaborated in this research, and to Isaac Besalú, a master's student, for supporting the research team in various phases of this study.

**Conflicts of Interest:** The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results.

#### **References**


## *Article* **Experiences of Inclusive Action and Social Design Research with Social Workers and People with Intellectual Disabilities**

**Jeroen Knevel 1,\*, Jean Pierre Wilken <sup>1</sup> and Alice Schippers <sup>2</sup>**


**Abstract:** In this study, we report on a two-year experience of inclusive participative action and social design research consisting of intensive collaboration between social workers, people with intellectual disabilities and researchers. Action research and design research are attunable and lend themselves to an inclusive approach aimed at knowledge development and change in practice. Social workers and people with intellectual disabilities were involved in a community of development. They became owners of the subject matter and the answers and solutions they designed. We conclude that an inclusive approach lends itself well to combining or even merging action research and social design research. Inclusive participative action and social design research cannot be standardized since it contains a particularly emergent process. Hence, it requires flexibility and creativity in finding ways to create an inclusive process of co-creation.

**Keywords:** action research; design research; inclusion; social workers; intellectual disabilities

### **1. Introduction**

In this study, we report on a two-year experience of inclusive action and social design research consisting of intensive collaboration between social workers, people with intellectual disabilities and researchers. The goal of this project was to deepen and nuance the knowledge on how social workers working with individuals with intellectual disability can promote social inclusion. In this article, we present this project as a case study to report on the experiences we gained applying an integration of inclusive research, action research and social design research. First, an elaboration on notions of inclusive research is provided. Then, we describe the research design and the methods we employed to give shape to inclusivity and the road towards desired outcomes.

### *Inclusive Research, Action and Design Research*

Inclusive research is gaining ground in Western countries, including in the Netherlands (Grant and Ramcharan 2007; Riches and O'Brien 2017; ZonMw 2021). Researchers have embraced inclusive research and policy and funding bodies increasingly demand stronger involvement and influence of people with disabilities; this is also influenced by advocacy organizations ("nothing about us without us") and the UN Convention on the Rights of People with Disabilities (UNCPRD) (Sherlaw and Hudebine 2015). Adopted on 13 December 2006, the UNCRPD considers "persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them" (United Nations 2006). In the Netherlands, this has been laid down in the implementation plan, which holds that people with disabilities in their role as citizens, consumers and stakeholders are actively involved in the formulation and evaluation of policies (VWS 2017, 2018). In the field of

**Citation:** Knevel, Jeroen, Jean Pierre Wilken, and Alice Schippers. 2022. Experiences of Inclusive Action and Social Design Research with Social Workers and People with Intellectual Disabilities. *Social Sciences* 11: 121. https://doi.org/10.3390/ socsci11030121

Academic Editor: Patricia O'Brien

Received: 22 January 2022 Accepted: 8 March 2022 Published: 10 March 2022

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

scientific research, this movement has resulted in a wide variety of participative and inclusive research designs (Frankena et al. 2015; Nind and Vinha 2014; Strnadová et al. 2016). Milner and Frawley (2019) call this a third wave of inclusive research that moves beyond "research on" and "research with" to "research by" people with disability.

Inclusive research is associated with labels such as participatory, collaborative, and interventionist research, co-design, community design and social innovation (Chick 2012; Joore et al. 2021; Nind 2014, 2017). Inclusive research, participative research, participative action research and emancipatory research constitute an extensive family of overlapping approaches (Nind 2014).

Walmsley and Johnson (2003, p. 16) introduced the term "Inclusive Research" with respect to people with intellectual disabilities, which encompasses three principles upon which inclusive research is based:


From these principles, derive distinguishing characteristics that research is owned, but not necessarily initiated, by people with intellectual disabilities, that research enables people to exercise control over the process and outcomes, that research furthers the interests of people with intellectual disabilities, that it produces accessible outputs, that researchers are on their side and that it is collaborative. Inclusive research embraces participatory and emancipatory approaches to research (Walmsley and Johnson 2003, p. 64).

Action research lends itself well to emancipatory processes and goals. With its many faces, action research holds inquiry undertaken by or with insiders to an organization or community, but never to or on them (Anderson and Herr 2015). It emphasizes people's lived experiences, individual and social change and the co-construction of knowledge. In doing so, epistemic justice is effectuated (Byskov 2021). Ultimately, it leads to a more just situation for the stakeholders (Greenwood and Levin 2007; McIntyre 2008). In effect, action research presupposes an inclusive approach and, despite a dearth of clarity as to what exactly inclusive research is, much experience has hitherto been gained (Bigby and Frawley 2010; Frankena et al. 2015; Garcia-Iriarte et al. 2009; Morgan and Moni 2013).

We would like to add social design research to this family of approaches. Design thinking is an iterative methodology that inspires a human-centered approach to design and can be divided into five key steps: empathize, define, ideate, prototype and test. Social design research focuses on the design and testing of generic solutions to problems. It is driven by the desire to solve field problems in collaboration with those concerned. Social design research aims at social change, for instance: improving social work practice by means of designing solutions (Van Beest et al. 2017; Margolin and Margolin 2002). It does not primarily seek truth, however it endeavors improvement of the social work practice (Van Aken and Andriessen 2011). Hence, social design research principally departs from the perspective of the stakeholders, for instance that of the social worker and people with intellectual disabilities. Action research is by definition participatory and pursues knowledge development and social change in practice. This implies personal and collective "professionalization" of the participants that is akin to the emancipatory praxis—interaction action and reflection—and critical consciousness (Anderson and Herr 2015; Freire 1970; Hammen-Poldermans 1975).

Inclusive research involving people with intellectual disabilities has evolved from a focus on process and ethics to being more concerned with outcomes: first- and secondgeneration inclusive research (Nind 2016; Strnadová and Walmsley 2018; Walmsley et al. 2018). Both foci remain valuable and should be pursued.

Process, outcomes and research with and by people with intellectual disability can, and should, concur in action and design research. It is not a matter of research on, research with or research by, but rather a matter of allowing the mixture of and dynamic between

each three "waves", since positionalities of the researcher and the modes of participation may vary during the project (Thomson and Gunter 2011).

The aim of our research was to bring about changes that contribute to a more inclusive social work practice. For the purpose of this article, we focus on the methodology used and share the experiences of carrying out inclusive action and social design research with people with an intellectual disability and social workers.

#### **2. Materials and Methods**

#### *2.1. Study Design*

We conducted a two-year inclusive approach merging participatory action research with social design research and using the theoretical lens of method configuration (Joore et al. 2018, 2021; Margolin and Margolin 2002; Nind 2014; Van Turnhout et al. 2017). As for the social design process, we were inspired by design thinking and the closely related double diamond model (Veer et al. 2020).

Participatory action research and social design research are brought together in the model of a *Community of Development* (CoD) (Wilken et al. 2021) that we applied in this project. The CoD is based on the model of community of practice (CoP) put forward by Wenger (Wenger 2010). A community of practice can be viewed as a social learning system in a social context in which a dual process of meaning making materializes. This duality consists of participation and reification. The first involves active involvement in activities, conversations and reflections. The latter involves producing physical and conceptual artifacts such as words, tools, concepts and methods. The community of development includes both participation and reification, but links this dual process to four goals, namely, producing knowledge, designing a solution, bringing about (social) change and personal and collective professionalization of the participants (Van Beest et al. 2017). The CoD further distinguishes itself from the CoP by highlighting (social) solution design and by substantiating the process and results—artifacts—with research. That is why the CoD constitutes a vehicle that fits seamlessly into what we call inclusive action and social design research.

In a CoD, one of the principles is that all relevant stakeholders are represented. In the case of this study, people with an intellectual disability and social workers were the key participants. CoDs are supported by a researcher and a facilitator. The researcher focuses on the research process (data collection), the facilitator is responsible for managing the group dynamics; both prepare the CoD meetings together, attend the meetings, provide (visual) reports of each meeting to participants and reflect on the meetings with each other as well as with the participants.

In our research project, we have embraced the idea of method configuration as it lends itself well to intensive participatory action and design research in which planning and emergence or, as Van Turnhout et al. (2017) call it, "spontaneity" coincide. The rationale behind method configuration is that enhancing validity requires more than applying one or a few methods. Woolrych et al. argue that methods consist of "loose incomplete collections of resources which you configure, adapt and complement to match specific project circumstances" (2011, p. 940). They explain method configuration by the analogy of culinary dishes: "The method, like a recipe, is at best a guide to action. As with culinary dishes, [action research projects] a focus is needed more on what gets cooked, and how it gets cooked, and not just on how recipes suggest that it could [or should] be cooked" (Woolrych et al. 2011, p. 940). The culinary dish and a recipe's ingredients are a metaphor for the research goals and the resources. The methods we employed consisted of dialogues, unstructured interviewing, focus group sessions, participatory observations plus design thinking and double diamond principles. The resources included paper ball showers, musical chairs, prompting questions, scaling questions, brainstorm techniques, empathy mapping, collective analysis utilizing an ecological model of social inclusion, preliminary conversations with participants with an intellectual disability to support them in preparing for the CoD meeting and their participation, evaluation of group dynamics and the research

process with CoD participants, visualizations of each CoD meetings, pitches, et cetera. These resources derived from the design thinking method, the double diamond approach, participatory action and social design research methodology. The deployment of these methods and resources was contingent upon the process in which the CoD found itself.

The double diamond model is a variation on existing divergence and convergence models and is depicted as two tilted squares representing the four stages: discover, define, develop and deliver (Veer et al. 2020). The first diamond depicts the stages discover and define; the second diamond depicts the stages of developing and delivery. Both diamonds represent broadening or expanding possible solutions, defining the friction more precisely and making choices. After the defining stage, a number of directions for solutions are devised, followed by finally developing a solution with the highest potential for ensuring a promising and validated solution. The results section is outlined along the double diamond stages.

#### *2.2. Involving People (Phase 1)*

The first phase of the study lasted over a year and consisted of forming two separate CoDs, each located in a different region (Amsterdam and Wageningen), where people with intellectual disability, social workers and others involved in the local practice participated.

In Wageningen, social workers set up a sheltered employment project named The Football Workshop, which is accommodated in the local football club. People with intellectual disabilities called "football workers" support the volunteers, who perform maintenance work at the club; they organize training sessions and play weekly football home and away matches against teams from the local community and beyond. The Amsterdam context concerns a metropolitan area, where people with intellectual disabilities receive ambulatory support.

Snowball subject recruitment was used for participant enrollment. We were able to draw on a broad regional network of social workers and people with moderate to mild intellectual disability, including people trained as experts by experience. "An expert by experience is someone who has had direct experience of living with a diagnosis or status, and of receiving care, support and/or treatment as well as the potential exposure to restrictive interventions. As a result of this lived experience, they possess a unique insight and understanding that allows them to think, feel and act in ways that brings an 'added value' to whatever form of partnership working they are engaged in" (Hollins 2019, p. 3). In addition, we argue that their life experience is enriched by the experiences of others and that they have learned to transcend their individual life experiences. Generally, they have completed training to employ this knowledge, for example, as peer workers, consultants, lecturers or researchers.

Selection criteria for the recruitment of service users and experts by experience included being interested in the subject matter of social inclusion, being motivated to participate in the project, willingness to and being capable of sharing life experiences and being prepared to act as a "critical friend" to the other participants (Embregts et al. 2018). As far as the social workers were concerned, selection criteria for the recruitment were: (a) being employed as a social worker working with people with mild intellectual disability, (b) having an interest in the subject matter "inclusion" and (c) motivation to bring about change in the social work field aimed at promoting inclusion.

To communicate what the study entails, questions needed to be answered such as: what is the study about and what does a community of development entail, what activities take place in these CoD meetings, where and how often do we meet, who are the other participants, what is my role, what influence do I have, what is expected of me during and in between the CoD meetings and what is in it for me? To answer these questions, we offered a flyer in accessible languages, organized physical meetings—one to one or in small groups—and with the help of the feedback from social workers and people with intellectual disabilities we created a visual representation of the information for people with intellectual disabilities. The visualization needed to comply with accessible language

criteria and should not be childish. After several adjustments and the final approval of social workers and experts by experience it was ready for publication.

#### *2.3. Execution (Phase 2)*

A total of twelve meetings per CoD were held over a period of two years, at intervals of seven to eight weeks. The CoD Amsterdam and the CoD Wageningen were composed of social workers and service users. The CoD Amsterdam and the CoD Wageningen comprised eight and five participants, respectively, each containing two experts by experience.

Data collection consisted of audio recordings of all CoD meetings (N = 24), visual records of each meeting—each time these were shared with the participants for verification and all tangible results produced in the meetings such as photos of activities during the meetings, photos of notes on white boards, empathy maps, mind maps, brainstorm papers, sketches and analyses. The visual reports also contained a limited amount of written language, which succinctly explained the observations of the researcher and facilitator.

#### *2.4. Analysis, Sharing and Interpretating Data (Phase 3)*

Analysis was carried out in several ways. Firstly, data from audio recordings of the meetings of the CoDs were coded. Secondly, a descriptive analysis was made. This approach to data collection and sharing serves the hermeneutical process and ownership of those involved as well as democratic validity (Anderson and Herr 2015; Guba and Lincoln 1989). Due to COVID-19 measures, results from the first analysis were shared visually with the participants of the CoD during a digital meeting. The first analysis indirectly linked to designing a solution. It was principally aimed at answering an associated research sub question on the behavior of social workers that fits inclusion-focused performance of our central research question. However, the solutions designed by the CoD constitute interventions to support the inclusion-focused behavior of social workers. The second analysis contained a comprehensive description of the collaborative process of designing solutions and what conditions facilitated inclusion-focused social work utilizing the designed solutions; this was sent to the participants for reading and discussion in a physical meeting. The purpose of this approach was to supplement, refine and verify the analysis. A third analysis comprised the prototyping and testing of the designed solution. Each round of prototype testing yielded data that were evaluated with the CoD participants in order to make adjustments for the next round of testing.

#### **3. Results**

Using the stages of Design Thinking and the Double Diamond model, we discuss what has been learned in this project.

#### *3.1. Discover and Empathize*

Empathizing and discovery helps gain insight into the issue and articulate the questions that are central to the study. For obtaining approval and internal funding from the university, the researchers had to formulate a question prior to having it carefully discussed with social workers and people with intellectual disabilities. Hence, we deliberately formulated a broad research question that offered scope for further specification in collaboration with the social work practice, i.e., the management of service providers, social workers and people with intellectual disabilities. Although the general goal of the project (how can social workers working with individuals with intellectual disabilities promote social inclusion of people with a mild intellectual disability?) was formulated in advance, after the project started the CoD participants in Amsterdam and Wageningen had the opportunity to redetermine the research question. This revolved around questions like: What is the question? Whose question is it? How can we interpret the central question? Can we adapt the question to our own perspectives? Ultimately, the central question remained unchanged as participants felt that it had sufficient scope and that it fitted in with their own experiences. Refining the central research question to the context of social work and people

with intellectual disabilities occurred through self-enquiry by the social workers and was discussed with people with intellectual disabilities. In the CoD Amsterdam, this led to questions that were predominantly focused on record keeping and transferring information about the service user: Why is the record keeping and transfer we are carrying out good? What am I reporting and why? Since we are thinking about the form of record keeping and the transfer, how can it be improved? How can we enhance the service users' control over their records? Some life experts with intellectual disability nuanced this concern, saying: "Sometimes a service user does not want to think about his records and transfer. He likes it the way it is. Let him (social worker) do it." (quote from participant CoD meetings Amsterdam).

In this empathize and discovery stage, experiences were shared and assessed as practices and pathways to or from social inclusion (Simplican et al. 2015). In addition, conceptualizations of inclusion, exclusion, stigma, discrimination and equality were explored. This led participants to comment that they found themselves "to be a kind of destigmatizer when (they) consult with a private or government organization on behalf of or with a client." (quote from participant CoD meetings Amsterdam). To support the exploration, we deployed a mix of activities and tools:


#### *3.2. Define*

Using the aforementioned activities and tools, we converged to a point where we formulated the collective concern. This was done by clustering and scoring discussed issues. In addition, the CoD defined the design criteria of the intended solution. These criteria were reconsidered several times. In the CoD Amsterdam the concern was formulated in a design proposition (Denyer et al. 2008): if you believe that service users should have control over their records, then reverse the act of who records and transfers information in the records to others. This was captured in the title "Reverse Records". In the CoD Wageningen, the concern was molded into the design proposition: If you want the football workers—people with intellectual disabilities in sheltered employment at The Football Workshop—to move on to regular workplaces where the football workers feel recognized and valued, then focus on a sustainable cooperation with profit and non-profit organizations so that mutual recognition and trust can grow. For that end have the football workers organize football matches against football teams from profit and non-profit organizations including all preparations and evaluation activities. This was captured in the title "Towards Sustainable Reciprocity".

#### *3.3. Develop: Ideate, Prototype and Test*

In this stage, the focus was on finding, shaping, reshaping and testing possible solutions. Different techniques were utilized in both CoDs such as: the one second brainstorm, negative brainstorming, role play, organizing a "Goodies Exhibition" and collectively creating a timeline. Additionally, between the CoD meetings the participants collected examples of products that inspired them in the ideation. All these activities and brainstorm techniques were deployed to enhance creative thinking among participants and resulted in:


The development of the possible solutions was proceeded by an iterative process. By asking "how the Reversed Record Keeping complied with the European Union General Data Protection Regulation (EU GDPR)," life experts with intellectual disability notified us that we must be alert to privacy concerns (quote from participants CoD Amsterdam and Wageningen). Terminology was adjusted repeatedly until all involved could agree on the words used. The term "client" was rejected by social workers and most notably by people with intellectual disabilities. The following quotes came from participants of the CoD Amsterdam and Wageningen respectively: "We favor the expression Amsterdammer or service user" and "we address each other as football workers. We are all football workers".

#### *3.4. Delivery: Testing, Adjusting and Implementing*

Through the inclusive process, both CoDs delivered tangible results. The CoD Amsterdam delivered the Reversed Record Keeping Principles comprising:


The first three principles are formulated in order from "the action is entirely performed by the service user" to "the action is performed by the social worker", yet maintaining control with the service user as much as possible. The fourth is a basic principle and applies to every other principle. The fifth emphasizes the power relationship between the social worker and the service user. Strictly, service users ought to have personal plans and goals that must be periodically evaluated by the service user and the social worker. This principle seeks to reverse the situation, and thus equalize the power relation, by stating that social workers also have their learning goals to further professionalize. This evaluation is carried out in conjunction with the service user: "You evaluate my learning goals together with me, I evaluate your learning goals together with you." These five principles were designed graphically into a poster.

The testing and fine-tuning of the Principles of Reversed Record Keeping yielded additional results. First, the service users stated greater involvement and control in what goes into their records. Second, service users reported more involvement in how content is added to their records; this was facilitated by applying various forms of communication such as drawing, photography, vlogging and audio recording. Third, the CoD participants gained three insights into the usability of Reversed Recording; it appears suitable in longterm professional relationships and for recording life events. The Principles of Reversed Records require intensive attention for and involvement with the service user and fits best with episodes in life that are of greater significance for a person. The principles seem less suitable for daily reporting as the assumption among CoD participants was that daily reporting should be objective, concise and specific.

The CoD Wageningen delivered a decision chart "Towards Sustainable Reciprocity". It serves as a tool allowing the football workers—people with mild intellectual disabilities—to co-direct the organization of the football matches and surrounding activities and to assess which organizations offer good opportunities for sustainable reciprocal cooperation.

The decision chart complies with criteria set by the CoD participants. Criteria were: • Comprehensibility that refers to language structure and design; language includes


#### **4. Discussion**

In all stages of the project, social workers and people with intellectual disability played a crucial role. As a matter of fact, we would assert that they were the lifeblood of the research project. When the blood is thick or flows slowly, the project is at risk of losing support, credibility and emancipatory impact. Challenges that came across in keeping the project vital required continuous alignment with the participants and are briefly discussed below in terms of ownership, power (im)balance, implementation and enhancing emancipatory practice through merging action research and social design research as the vehicles that ride the inclusive road.

#### *4.1. Collective Ownership: Establishing a Collective Concern*

Since inclusion constitutes a comprehensive notion, in the discovery stage the biggest challenge was to explore inclusion and find agreement on its meanings. The research question, with inclusion as its central concept, was kept fairly open ended in order to give each participant the freedom to give meaning to inclusion from their own perspective. For all those involved, this required careful listening, patience, mutual trust and recognition and power sharing. For the researcher and facilitator, the challenge was to avert abstractions (use of words), too high paced discussions and to ensure that the meetings fit in with the culture of those involved; the latter holds taking into account the organizational culture, wishes of the participants concerning the design of the meetings and preferred learning styles.

Establishing the collective concern is a challenge in itself. With a view to ownership and thus a long-term commitment, it is crucial that every participant fully supports it. For that purpose, we additionally invited the participants to draw up a personal goal that is in line with the collective concern. In sharing knowledge—experience based, professional, scientific—emphasis was put on experiences from people with intellectual disability and social workers partaking in the CoD. In doing so, we attempted to accommodate and safeguard epistemic justice (Byskov 2021; Geuskens 2018; Schippers 2021).

#### *4.2. Power (im)Balance: Being in Control*

Power dynamics are omnipresent throughout each action research, social design research and inclusive research project (McDonald 2021; Nind 2014; Stoudt 2007). With

respect to establishing a collective concern, setting personal goals, ideation and devising the outlines and content of the intended solutions, ownership was maintained with the participants. In the design stage, the challenge centered on who was in the lead concerning the production of the designed solution. Basically, the researchers wanted to keep these steps controlled and carried out by the participants and their network. However, the participants appeared to lack the digital skills—proficiency in Adobe Illustrator and Adobe InDesign—required for graphic design and materialization. This prompted a situation where the researchers, with proficiency in design software, complemented the participants' capacities in the design process. Although in consultation and with the consent of the participants—they even indicated they were happy that the researcher took on this task the researchers experienced this as a breach in democratic validity since the participants relied too much upon the researchers' skills.

#### *4.3. Implementation of the Designed Solution*

With regard to delivery, our challenge was to get the intended solution implemented. In testing the intended solution as a CoD, we discovered weaknesses and threats (external factors) that hampered implementation. (Verhagen and Haarsma-den Dekker 2019) discern three dimensions of implementation: physical, mental and structural. Physical implementation concerns creating, developing and testing the design and winning support, for instance among service users and staff members. Mental implementation refers to informing, accepting and incorporating new ideas and new design. Structural implementation revolves around learning to utilize the design and letting it fit into the social work practice. Physical and mental implementation was accomplished. In particular, the participants disseminated the intended solution in their surrounding professional network; physical implementation and mental implementation effectuated. Structural implementation, however, was not achieved, for it demands harder nuts to be cracked. Structural implementation may have the consequence that a fundamental change in macro practices and macrosystems (for instance the Electronic Health Record systems) is required such as regulations that prescribe rules for keeping records. This moves beyond mere social change as it also demands political debate and amendments in national legislation. Furthermore, it presupposes a wider scope of the project, which, although we as a CoD cherished, was beyond our scope and possibilities.

#### *4.4. Merging the Inclusive Approach with Action Research and Social Design Research*

Merging action and social design research has led to insights into how to achieve a balanced approach to inclusive research. First, the application of method configuration allows the researcher to accommodate and match the needs and capacities of participants, both social workers and people with intellectual disabilities. As described in this article, we have demonstrated a multitude of methods and resources that have been deployed. Action and reflection processes—and the support of epistemic justice—in inclusive research with people with intellectual disabilities benefit greatly from the employment of a variety of creative and active activities such as drawing, photography and vlogging and kinesthetic activities such as walking, football exercises, musical chairs and so on. However, this is not exclusive to people with intellectual disabilities and social workers and the palette of activities should not be used arbitrarily. It foremost requires careful observation and a feeling for group composition, group culture and group dynamics.

Second, consistent employment of visualizations as an accessible form of communication contributes to understanding the subject matter and the project's progress and facilitates giving voice to each participant. Visual communication is in keeping with (social) design research. Third, ensuring the balance is part of all the research stages where the voices of people with intellectual disabilities invariably come to the fore, from the discovery phase—mutually empathizing with the social worker and the person with intellectual disability who receives services—up to the delivery phase, which includes testing and adjusting the designed solution and implementation. Fourth, maintaining balance lies

in closely monitoring the multiple objectives of action and social design research project, namely, to change a social practice, to collectively design an answer and to yield new or validate extant knowledge. Keeping these objectives continuously in mind needs to be a responsibility for both the researchers and the participants, since the project is a shared endeavor. Fifth, the CoD is a place that accommodates both research approaches. Moreover, the CoD appears to be an exquisite place, where the voices of social workers and people with intellectual disabilities are heard and, in fact, predominate.

#### **5. Conclusions**

The aim of our research was to bring about changes that contribute to a more inclusive social work practice. However, this article was dedicated to the methodology and what we can learn from executing inclusive action and social design research with people with intellectual disability and social workers in order to advance inclusive social work practice.

In the project, types of equal collaboration were explored in order to redress power imbalances between social workers and service users. We outlined the amalgamation of an inclusive approach with action research and social design research, which seems promising in involving people with an intellectual disability in a meaningful and empowering way.

We conclude that inclusive research can and should not be standardized, since it concerns a particularly emergent and iterative process. It requires flexibility and creativity in finding ways to inclusively collaborate with social workers and people with intellectual disabilities. The involvement of service users in all design thinking phases is possible. The performance of activities and the division of tasks can differ per phase.

Working in partnership with social workers and people with intellectual disabilities requires sensitivity to sharing power and the utilization of diverse communication modalities. A researcher should not eschew losing control over the process and allow the design process to generate unexpected or initially unintended outcomes. Furthermore, inclusive cooperation demands a safe and welcoming environment that offers space to think freely and speak up; for that, substantial attention is needed for group dynamics and learning strategies that encourage co-production.

The beauty and the great value of inclusive action and social design research is the cooperative quest you embark on that generates myriads of collective and individual returns along the way: visible, palpable, tangible, measurable and immeasurable. It all counts.

**Author Contributions:** Conceptualization, J.K., J.P.W. and A.S.; methodology, J.K., J.P.W. and A.S.; software, J.K.; validation, J.K., J.P.W. and A.S.; formal analysis, J.K.; investigation, J.K.; resources, J.K.; data curation, J.K.; writing—original draft preparation, J.K.; writing—review and editing, J.P.W. and A.S.; supervision, J.P.W. and A.S.; project administration, J.K. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research received no external funding.

**Institutional Review Board Statement:** Ethical review and approval were waived for this study, due to circumstances that at the time of the study application (2017) there was no separate ethical committee at our university to look into the ethical aspects of the research and provide formal advice. However, an independent committee assessed the entire study application. We can provide that reference/code: DHR/PD-KV/2017-374.

**Informed Consent Statement:** Informed consent was obtained from all subjects involved in the study. All subjects involved, however, cannot be identified.

**Data Availability Statement:** Data sharing not applicable. No new data were created or analyzed in this study. Data sharing is not applicable to this article.

**Conflicts of Interest:** The authors declare no conflict of interest.

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