The United National Convention on the Rights of Persons with Disabilities (UNCRPD) (United Nations, 2006) is premised on ensuring that persons with disabilities can experience “full and equal enjoyment of all human rights and fundamental freedoms”. For all persons, though, the achievement of such experiences does not just happen and is framed by the realisation of the general principles as outlined in Article 3 of the Convention. It is also framed by the ability of the person to voice their choices and desires, and to do so in a state of optimal wellbeing.

Individuals with intellectual disabilities are more likely to experience mental health issues than those without intellectual disabilities (Littlewood et al., 2018) with their prevalence rate increasing with age (Sheerin et al., 2017). This may not be directly related to the aetiology resulting in intellectual impairment but, rather, to the fact that people with intellectual disabilities are often negatively impacted by social stigmatisation and marginalisation (Hermans & Evenhuis, 2012); thus, they may be more vulnerable to the labelling of differences as mental health concerns as well as to actual poor mental health and wellbeing compared to those without intellectual disability (Kattari, 2020; Knight et al., 2019). Among frameworks, the Health Stigma and Discrimination Framework has highlighted influence on stigma associated with mental health concerns, at the socio-ecological levels of public policy, organisation, community, interpersonal, and as individual (Stangl et al., 2019). Findings in the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) wave 3 report (Sheerin et al., 2017) confirmed that adults with intellectual disabilities experience anxiety and depressive symptoms due to negative events affecting their lives. These events include changes in their regular lifestyles, such as new staff or residents in their homes or day services they attend; change in frequency of visits; death or major illness of a relative, caregiver, or friend; or when they experience major illness or injury.

Because this population experiences poorer mental health outcomes, it is important to implement strategies relevant to their mental health experiences and to engage them in the development of such strategies (Knight et al., 2019). These may improve mental health, that is “a state of well-being in which an individual realises his or her own abilities, can cope with the normal stresses of life, can work productively, and is able to make a contribution to his or her community” (World Health Organization, 2018). There is, however, limited information regarding the perspectives of people with intellectual disabilities themselves on what mental health and wellbeing means to them and on what coping strategies they use to maintain health, hence, the rationale underpinning this project. The importance of accessing the perspectives of people themselves is grounded in the reality that people with intellectual disabilities have historically not been asked for their opinions, particularly if they had diverse ways of communicating (De Haas et al., 2022). Facilitating voice is key to supporting freedom of expression and opinions which ensure that definitions and understandings of concepts, such as mental health, are inclusive of the perspectives and experiences of the whole community. This is at the heart of Article 21 in the UNCRPD (United Nations, 2006). Furthermore, providing opportunities for people to engage in “conversations” on their subjective experiences can be both destigmatising and normalising (Elomaa et al., 2023; Sharp et al., 2022), and thus promote good health (Article 25 of UNCRPD).

Two literature reviews (Clarke et al., 2022; Lonergan, 2020) have concluded that some people with intellectual disabilities may benefit from psychodynamic, cognitive-behavioural, and cognitive therapies, but there is little data on the importance of specific interventional components or on optimal delivery approaches. The literature does, however, provide some insights into a number of coping strategies (Chaplin et al., 2012; Hardiman et al., 2018; Knight et al., 2019; Littlewood et al., 2018) and therapies such as compassion-focused therapy for adults with intellectual disabilities (Hardiman et al., 2018). In seeking to develop self-help skills, Littlewood et al., (2018) employed therapeutic interventions including relaxation, mindfulness, and control of breathing and noted some improvements in wellbeing among the three participants. In particular, they found reduced self-criticality, stress, and anxiety with improved self-compassion (Littlewood et al., 2018).

Chaplin et al., (2012) considered less-formal approaches, with a focus on the pursuit of leisure activities such as listening to music, shopping, watching television, exercising, reading, and socialising. These were suggested to be effective coping strategies for individuals with intellectual disabilities as confirmed as such by both clinical experts and people with intellectual disabilities themselves. Knight et al., (2019) examined similar strategies in their study into the use of behavioural activation and self-help approaches, emphasising the usefulness of leisure activities, such as physical activity, writing diaries, and encouraged therapy. Findings indicated that these activities, combined with a strong therapeutic relationship, led to positive outcomes for participants, including improvement in mood, relationships, and confidence, as well as promoting independence and stopping victimisation and bullying (Knight et al., 2019). A number of psychological self-help strategies were studied by Littlewood et al., (2018) including positive avoidance, cognitive reappraisal, cognitive distraction, and self-talk. These emotion-focused strategies were found to be effective in regulating emotions such as anxiety, anger, sadness, and fear (Littlewood et al., 2018).

This study aimed to elicit adults with intellectual disabilities’ understandings of mental health and wellbeing, through the interpretation of images produced by participants. In doing so, it also sought to explore the use of a novel methodological approach.

Methods

Participants

A snow-ball sampling approach was employed to recruit participants, using social media and email campaigns. Advertisements directed readers to the dedicated website which included information on the study, an invitation letter, and submission form for participants to indicate their consent to participate in the study. The inclusion criteria were that participants must be adults with an intellectual disability. While the study was particularly seeking participants from Ireland, Spain and the Netherlands, the survey allowed for responses from individuals across Europe. To facilitate this, the submission forms were in three different languages (English, Spanish, and Dutch) and participants were also able to identify country-specific documentation by clicking on the country flags on the dedicated webpage. Three-hundred and twenty-nine images were received, 230 images from Spain, 75 from the Netherlands, and 24 from Ireland. No other countries are represented.

Procedure

This project employed an online anonymous survey approach asking individuals to respond to the question “what does mental health and wellbeing mean to you?” In doing so, they were requested to prepare an image, photograph it, and upload it, along with a narrative description, via a dedicated website. All uploaded images would then be analysed and brought together in the form of a collage or electronic quilt (eQuilt).

The making of quilts is something that has been seen across cultures and time. While the quilt itself may have had the simple function of being a cover for a bed, the process of making quilts has been associated with social gatherings, human rights advocacy, remembrance and expression of community perspectives. Traditionally, members of communities, particularly women, came together to engage in the activity, each contributing a component (a quilt square or hexagon), which would be brought together with others, creating a joint social endeavour and sense of belonging at a point in time. In some communities, mothers made quilts for their children before they left home to live independently or to daughters upon their engagement or marriage (Allen, 2017). These quilts were passed through the generations, creating that same sense of belonging but across time. Quilt-making has also been used to highlight social justice issues; for example, Susan B. Anthony made her first suffrage speech, advocating for women’s right to vote, at a quilting event (The Anthony Museum, 2020). More recently, they became a way of providing a platform for people whose voices had been ignored or unheard (National AIDS Memorial, 2021). The concept of an electronic quilt is novel and was first reported by Keating and Sheerin, (2013) in a social action on identifying the human rights that people with intellectual disabilities considered important in their lives. The uniqueness of this approach was recognised by MacDowell et al., (2016) in their seminal text of quilts and human rights. Further attempts have been undertaken by members of this team in the use of such an approach to explore the perspectives of people with intellectual disabilities on social accessibility and identity. In keeping the use of quilting to support rights and voice, it was considered that this approach could be used as a way of gaining the perspectives of people with intellectual disabilities on mental health and many other areas of importance for them. While the current study is the first attempt to use it as a means of data collection to support voice, it should be noted that another important outcome was that conversations regarding mental health would be stimulated through individuals engaging in the eQuilt activity.

Responses were submitted in the form of electronic images, mostly artwork created by participants. These were submitted via a SurveyMonkey® questionnaire embedded in a dedicated website employing accessible language and images. There was also an option to accompany the image with a short narrative piece. The SurveyMonkey® site provided the platform for hosting the questionnaire and allowed for collation of responses and an upload facility.

Accessible participant information and consent forms along with a guide on how the image-making might be approached preceded the upload page. These were prepared using accessible language and images and it was possible for them to be downloaded and printed. Participants were asked the following question: What does mental health and wellbeing mean to you? They were informed that their images would be brought together with others’ images to make an eQuilt. While no prompts were provided by the research team, it is not clear what prompts, if any, arose in the discussions between the participants and those people who assisted them.

The eQuilt activity was launched on 1st January 2020 collecting data until the end of March 2020. The advent of Covid-19 and ensuing restrictions resulted in data collection being terminated prior to the submission date. Although some images had been prepared by then, none were submitted via the platform until months later. Submissions were reopened in August 2020 and continued until November. Participants were encouraged to seek assistance from family and other carers in developing their image. The SOOTHE eQuilt brought together 329 images from people with intellectual disabilities across three countries. While each image upload was a discrete event, there is no information on whether individuals may have submitted more than one image and, therefore, the actual number of participants cannot be accurately ascertained.

Data Analyses

Images were collated according to imaged-related similarities and analysed thematically, and independently, by two authors based on the apparent concepts portrayed in them. The research team sought to employ a structured approach informed by Drew and Guillemin (2014) three-stage framework: meaning-making through (1) participant engagement; (2) researcher-driven engagement; and (3) recontextualising. The absence of usable narrative data limited the participant engagement and the ability to undertake in-depth analysis. Following their independent collation of images, the two authors together considered their decisions, explored potential meanings, and considered their meaning in context of their creation and the focus of this study. While the authors did not want to “interpret” the images, it is inevitable that any collation of images according to apparent similarities may have led to meanings not intended by participants. All submitted images were combined electronically to form an eQuilt reflecting the diverse perspectives of participants in respect of mental health and wellbeing. Images which appeared to relay similar concepts then classified into seven main themes.

Results

All images were brought together in the form of the SOOTHE eQuilt of Mental Health and Wellbeing (Fig. 1). Upon closer inspection, a number of areas emerged which may be considered themes. Seven broad thematic areas were identified, namely (1) Covid-19 and mental health; (2) maintaining good mental health; (3) activities that promote good mental health; (4) nature and mental health; (5) perspectives on self; (6) the importance of relationships; and (7) home and feeling safe. These are presented and discussed along with a selection of images.

Fig. 1
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The SOOTHE eQuilt of mental health and wellbeing

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Covid-19 and Mental Health

As was noted previously, preparation and submission of the images took place against the backdrop of the first wave of Covid-19 across Western Europe. It is, therefore, not surprising to see images related to the pandemic. Thirty-three images were received and these portrayed representations of the virus and mask wearing; five of these are included in Fig. 2.

Fig. 2
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Covid-19 and mental health

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The effects of Covid-19 and related restrictions on the health of various groups of people are starting to be reported in the literature, though evidence on the mental health effects is scarce. It is suggested that such effects will manifest (Courtenay & Perera, 2020; Perera et al., 2020), and this is supported by the results of a very recently reported systematic review (Flannery et al., 2021) and data from wave 4 of IDS-TILDA (McCarron et al., 2020). A number of images portrayed the virus with a laughing or sad face imposed on a picture of the virus. Many also showed masks, either on the faces of participants and carers or on their own. Two images (Fig. 2) appear to represent the virus attacking humans. The effect of this on the mental health and wellbeing of people with intellectual disabilities is suggested through the preponderance of sad expressions and “broken” hearts. The masks, however, impede expression of sadness and fear, and this poses problems in respect of communication of non-verbal facial cues, something which is important among people with intellectual disability and caregivers (Mac Giolla Phadraig et al., 2017).

It is interesting to note that all images related to Covid-19 came from participants in Spain. Of the three countries involved in this study, Spain probably experienced a more significant impact from the Covid-19 pandemic during the first 6 months of 2020, when many of the Spanish images were prepared (unlike those from Ireland and the Netherlands which were prepared during the second half of the year). It may be that this reveals a greater awareness of, and anxiety related to, the pandemic among Spanish participants.

Across all three countries, however, the introduction of restrictions resulted in the alteration of daily patterns. Anecdotes have suggested that, for some, this novel situation was positive, but new research notes that the prolongation of restrictions became more onerous with time (McCarron et al., 2020). Indeed, it may be that the introduction of restrictions and new barriers represented a potential regression into quasi-institutional structures mimicking those of the past.

Maintaining Good Mental Health

Sixteen images were received which provided insight into participants’ perspectives on how to maintain positive mental health and wellbeing. These images came from across all three countries and pointed to health promotional activities. A couple of images presented the brain. One portrayed it as el cerebro pensador (the thinking brain), suggesting the need for the mind to remain active; another, as a receiver for medications, perhaps indicating the need to adhere to medical treatment (Fig. 3).

Fig. 3
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Maintaining good mental health

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The idea of maintaining life balance is also seen in various images, with one suggesting that “food and mood” need to be nurtured, against a backdrop of music and nature. This is revisited in another, in an attempt to represent feelings as pieces of a puzzle requiring therapeutic processes. Finally, it is implied that maintenance of a healthy mind is supported by taking time for reflection. These ideas are continued in the next two themes which highlight the importance of environment and activities for mental health and wellbeing.

Activities that Promote Good Mental Health

In all, sixty-eight of the images reflected on activities, roughly sub-categorised as doing enjoyable activities (Fig. 4) and getting out and about (Fig. 5). Thus, the importance of keeping well through engagement in activities was strongly highlighted, but it is clear, from the nature of those activities, that many of them were aspirational during restrictions recalling memories of things which led to people feeling happy and well. They may be indicating that participants were missing engagement in such activities and that this could have been contributing to less positive mental health.

Fig. 4
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Doing enjoyable activities

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Fig. 5
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Getting out and about

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Much has been written regarding the mental health benefits of activities (Becofsky et al., 2016; Lee & Hung, 2012) and those identified in the many images involved doing things that required movement (walking, playing games, dancing to music, and getting out on bus rides). Another aspect of these activities is that they often led to increased social interaction; this can be positive for mental health (Layous et al., 2014) and was compromised for many during the pandemic (Creese et al., 2021).

Nature and Mental Health

The desire to engage in enjoyable activities was also demonstrated in the fifty-six images which were submitted relating to nature. These included representations of plants, flowers, trees, animals, and birds as well as general nature scenes (Fig. 6). It is interesting to note that there were several images of trees, perhaps denoting a sense of stability and “rootedness” in the context of insecurity, something which has been the experience of many people with intellectual disabilities during the pandemic (McCarron et al., 2020). Engagement with nature has long been suggested to have a positive effect on mental health (Berman et al., 2012), and this assertion has continued to be evident in literature produced during the pandemic (Bratman et al., 2019; Soga et al., 2021).

Fig. 6
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Nature and mental health

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It is notable, too, that many of these images used vibrant, bright colours and portrayed nature in a positive and almost idealised state, with blue skies and a bright sun, which often had a smiling face. The absence of poor weather and the presence of life in its many forms suggest, again, a potential longing for something positive in the reality of quite a difficult and stressful time. Such a focus may be seen by participants as a way of averting negative thoughts, low mood, and anxiety.

Perspectives on Self

Twenty-seven images were submitted which presented pictures of faces and individual people (Fig. 7). The meaning behind these and the identity of the people portrayed is unclear. Representation of human figures and, as will be seen in the next theme, of social groupings has been noted in previous work with people who had intellectual disability and autistic spectrum disorder (Bergmann et al., 2021). It is possible that the images may give insight into participants’ perspectives on themselves. Such a suggestion is conjecture, but perspectives on self are often central to mental health uncovering how we feel about ourselves at a given time. They also play a role in the appraisal, mediation, and moderation of stress (Thoits, 2013). The faces and human bodies depicted in these images largely demonstrate facial expressions of happiness and body postures, indicating positive mental health and wellbeing.

Fig. 7
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Perspectives on self

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The Importance of Relationships

The Covid-19 pandemic presented significant changes in the ways in which people interacted with each other. Physical closeness and contact were largely removed, except for those in small family units or groups. The application of restrictions and physical distancing was particularly acute in formal health and social care settings, and this was no different in intellectual disability centres and community homes. The importance of social groups has been noted previously, and the social environment plays an important role in people’s lives; for some, closeness is important, whereas for others it may not be. The presence of other people may, however, provide a context for understanding oneself and one’s place in society, and this is fundamental to interpersonal relations (Peplau, 1997). The social environment can be affirming or otherwise and the key points of reference are family and friends, who may contribute to one feeling loved.

Forty-six images were received which portrayed relationships, both with family and friends, many including representations of intact hearts (Fig. 8), indicating the importance of relationships in sustaining good mental health and wellbeing. The images mainly depict happy interactions and connecting with others. The presentation of “intact” hearts here and of “broken” hearts under an earlier theme suggests that loving sentiments are associated with good mental health.

Fig. 8
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The importance of relationships

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Home and Feeling Safe

The final theme which appears across the images received is that of having a home or a place where one can feel they belong. It may be that such a place again represents a feeling of security and stability and may even be a reference point for individuals. It is interesting to note that the twenty-three images submitted often represented “home” in something of an idealised way and depicted light, happiness, nature, and, crucially, security (Fig. 9).

Fig. 9
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Home and feeling safe

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Poor mental health and insecurity may be bi-directionally associated, such that one affects the other (Galynker et al., 2012). The home, like family, may also demonstrate a sense of belonging; a place where one can be oneself. Thus, the home may be the place where a number of concepts underpinning the other themes may come together (self, relationships) and, with the imagery of nature, may be a place where (from an idealised point of view) one experiences positive things. Many adults and older people with intellectual disability do not have their own homes and may find themselves living in service locations which may or may not provide such experiences. The perceived security that home represents may again provide insight into what these participants understood to be something that promotes good mental health and wellbeing.

Other Images

Sixty-one other images were received which have yet to be considered in detail. These are abstract pieces; the meaning of which are not immediately recognisable. They comprise colours and patterns, and it is intended that further consideration and analysis will be dedicated to these in the coming months.

Discussion

The participants in this eQuilt activity provided us with insights into how they understand mental health and wellbeing. Mental health and wellbeing were visualised as being associated with the mind (brain) and with positive imagery and happiness. Such wellbeing is contextualised by factors which contribute to or detract from mental health, including things that make people feel positive and “socially connected”. They also include aspects that allow people to feel belonging and loving.

It is clear, though, that Covid-19 and its related restrictions were a source of concern for the project participants, and this is evidenced in images portraying sadness and fear. While it is difficult to extrapolate the actual nature of these experiences from the images, it is known that changes in routine and social environment can contribute significantly to symptoms of anxiety and depression (Sheerin et al., 2017). Thus, the fact that the public health restrictions led to some people being moved from one living space to another and to a dynamic social environment in which staff, fellow residents and family became ill and fell out of contact for protracted periods of time, meaning that the buffering effect of social supports was lost, something that has been associated with the management of stress (Cohen & Wills, 1985). These effects were seen in the fourth wave of IDS-TILDA in which 55% of people reported stress and anxiety as a result of the pandemic (McCarron et al., 2020).

The eQuilt demonstrates that people with intellectual disabilities have insights for both themselves and for others on mental health and what they see as the factors that contribute to good and poor mental health and wellbeing. The images here appear to relate to daily life activities and processes and coping with stress, whether due to internal or external issues. This tends to harmonise with the World Health Organization, (2018) definition used by the authors. Indeed, the tendency to focus on positive images (home, activities, and family) at the height of a particularly stressful time may also point to an ability to use and interest in using stress avoidance techniques to buffer the stress experience (Thoits, 2013). This has important implications for the design and delivery of interventions, suggesting a focus on such techniques rather than an overemphasis on insight, for example.

It is likely that most of the eQuilt images created by people with intellectual disabilities included assistance by family members or by formal/informal caregivers. This is an important point as the preparation of each image was probably contextualised by a dialogue between people on mental health and wellbeing. In mainstream society, much work has taken place, in recent years, to normalise discussions of mental health and has facilitated an increased focus on the subjective experience of wellbeing and of “aliveness and energy” (Ryan & Frederick, 1997). Facilitating the expression of one’s perspectives on mental health and wellbeing offers hope for the future and retrieval/reconstruction of self (Brijnath, 2015; Higgins, 2008; McDaid, 2013) and this is a central component of the recovery model that has become so prevalent in mainstream mental health. These are achieved by re-establishing a locus of control (empowerment) in the person and thus supporting empowerment, in a supportive and connected context (Higgins, 2008). This is particularly pertinent to people with intellectual disabilities, many of whom have lived with the reality and stigma of mental illness and poor mental health throughout their lives and, for whom, access to recovery-oriented mental health services may have been limited (Handley et al., 2012). Such work has not taken place in the intellectual disability population and the SOOTHE eQuilt may be a timely step towards redressing this.

The findings of this study suggest that the use of quilting may present as a useful approach to data collection to obtain the perspectives of people with intellectual disabilities. Whereas, this was conducted in an electronic manner, the electronic image was preceded by the creation of a physical image, and this was developed in discursive engagements with other people. Thus, the voice of people with intellectual disabilities was supported in that space as well as being further represented in the image. As such, it may present as a promising approach for further work, particularly where perspectives on experiential comments are being explored.

Limitations and Future Research

This study sought to explore mental health and wellbeing among people with intellectual disability using an electronic quilt approach which may offer an interesting methodological approach that might be considered for future studies. The findings offer useful insights into the participants’ subjective perspectives on mental health and wellbeing. There are, however, limitations to any study like this. The participants represented a self-selecting cohort, and so their perspectives cannot in any way be generalised beyond themselves; there was never any intention to do so. While 329 participants constitute a good response, it had been hoped that a larger sample might have been obtained, considering that the study was across three countries. It is likely that the onset of Covid-19 and resulting restrictions did affect the response rate. No attempt was made to identify demographic information from the participants, other than country of residence, and so the researchers knew little about the participants or of their state of mental health at that time. Glaw et al., (2017), in their exploration of visual qualitative research methodologies, analysed images gathered in that study, though their work was supplemented by interview data allowing for a more thorough thematic analysis; this was not possible in relation to the eQuilt as there were very few narratives presented alongside images offering few insights. While independent coding of images was carried out by two authors, it is inevitable that, despite attempts to the contrary, their own subjective perspectives entered into the interpretation of what meaning was in those images. This is a limitation which might have been mitigated to some degree by the availability of narratives and/or dialogic engagement with the participants as described by Drew and Guillemin, (2014). This was not deemed possible for this study on account of pandemic-related restrictions.

This study represents an initial attempt to use the eQuilt approach to explore a concept as experienced and perceived by people with intellectual disabilities. A significant amount of inclusive research has been undertaken in recent decades which has sought to support the voice of people with intellectual disabilities, but new techniques are needed to elicit that voice from those people who do not use words. The embedding of creative arts in such research may go some way towards redressing this. While this study suggests that the eQuilt is a promising approach, further research is needed to explore how well the actual perspectives of the contributors can be represented. Based on this study, it is proposed that electronic quilting can achieve this, and that this can be tested through the preparation of narratives associated with the image creation and comparison of this to blinded reviewers’ evaluations. It may also be tested by using images and narratives together and returning to the participants for checking and confirmation. These approaches will be embedded in the authors’ next iteration of the SOOTHE project.

There is also a need to further explore the perspectives of people with intellectual disabilities on mental health and wellbeing. Such perspectives have the potential to contribute to the promotion of healthy living, the recognition of individuals’ coping strategies, and the development of technological and lifestyle responses to support increased self-management of mental health challenges, such as anxiety and low mood, that present in normal living. This was the focus of the broader SOOTHE project and there were indications that this can be achieved. Future research will explore and test the effectiveness of this approach in achieving such outcomes.