The experiences of people with intellectual disabilities living in Ukraine during the first months of the Russian invasion: A lack of fulfilment of basic necessities and support and uncertainty towards reforms

Abstract

The present study aimed to explore the situation of people with intellectual disabilities and their families during the first three months of the Russian invasion in Ukraine. Utilising a snowball sampling procedure, five participants were recruited to participate in this descriptive qualitative study. Thematic analysis was used to analyse the interviews. Five overarching themes emerged from the data: 1) The physical and mental well-being of people with intellectual disabilities was threatened due to a lack of fulfilment of basic needs; 2) People with intellectual disabilities experienced difficulties in finding safety within air-raid shelters; 3) People with intellectual disabilities and their families could only flee the country with help and support; 4) Creative solutions were developed to help keep in touch with and support people with intellectual disabilities and their families; and 5) Fear regarding the quality of life of and support for people with intellectual disabilities in the near future.

Point of interest

1. This research is important as it raises attention for the vulnerable position of people with intellectual disabilities and their families in Ukraine during the war.

2. People with intellectual disabilities experience difficulties when trying to access the safety of air-raid shelters.

3. This study showed how people with intellectual disabilities and their families depend on help and support to be able to flee the country.

4. During the war, people find creative ways to support people with intellectual disabilities and their families.

5. People fear for the future quality of life and support for people with intellectual disabilities in Ukraine after the war.

Keywords:

• Russian invasion
• war
• Ukraine
• intellectual disabilities
• families
• support

Introduction

On 24 February 2022, Russia launched an all-out military invasion of Ukraine, which signalled an escalation of the Russo-Ukrainian conflict that had begun in 2014 (United Nations 2022). The war has resulted in a profound humanitarian crisis that has caused, and continues to cause, deep and lasting damage upon human rights (United Nations Office for the Coordination of Humanitarian Affairs 2022). Since the start of the war, residents of Ukraine have fled their homes in search of safety, protection and assistance. Over the course of only several months, millions of refugees crossed the borders to surrounding countries, while many more were forced to seek refuge in relatively safer parts of the country (United Nations High Commissioner for Refugees [UNHCR] 2022). Amidst this humanitarian crisis, people with intellectual disabilities – sometimes in addition to physical disabilities – have been largely left to their own devices (UNHCR 2022).

There are over 2.7 million people with disabilities in Ukraine, of which approximately 260,000 have intellectual disabilities (Inclusion Europe 2022a). People with intellectual disabilities and their families in Ukraine already experienced manifold difficulties prior to the war. Although local governments introduced initiatives to foster a greater sense of social inclusion, people with intellectual disabilities regularly faced discrimination, restrictions on their autonomy and a lack of professional support in the event that their families were no longer able to support them (Inclusion Europe 2022a). According to estimates by Inclusion Europe, tens of thousands of children and adults with intellectual disabilities live in ‘care home’ institutions, which are large-scale residential care facilities that house a wide range of populations (e.g. people with physical and/or intellectual disabilities and people with psychiatric problems). Alternative care initiatives, often led by parents of children with intellectual disabilities, are more oriented towards community-based forms of inclusive support, where people with intellectual disabilities can continue to live with their families and receive the care and support they need (Soft Tulip 2022). While these initiatives were continually growing and steadily gaining favour with (local) authorities prior to the war, people with intellectual disabilities nevertheless remained in a vulnerable position within the country. Given that this group often depends on care and support from others in their daily lives, the conflict situation in Ukraine has significantly exacerbated their regular state of vulnerability and dependency. Since the onset of the Russo-Ukrainian conflict in 2014, Ukraine – particularly the eastern conflict-affected areas – has been the site of a humanitarian emergency. In 2021, it was estimated that out of the total number of people in need of humanitarian assistance in Ukraine, 13% of them had a disability (United Nations Office for the Coordination of Humanitarian Affairs 2021). Both refugee organisations and other interest groups have expressed fear over their wellbeing, on the grounds that there is a profound risk that they will not receive the support they desperately need, which, in turn, leaves them and their pre-existing support systems to simply fend for themselves (European Disability Forum 2022; Inclusion Europe 2022a).

Besides the current humanitarian crisis in Ukraine, prior research on other conflict situations also underscores how little is known about the experiences of people with intellectual disabilities during these situations (Grove, Grove, and Myerscough 2010; King et al. 2016; Luce 2018; Rohwerder 2013; Sandhu, Ibrahim, and Chinn 2017). Indeed, Rohwerder (2013) drew attention to the lacuna in both academic literature and humanitarian organisations and United Nations agencies with respect to the experiences of people with intellectual disabilities during conflict situations such as war. The present study seeks to respond to Rohwerder’s (2013) call to address this gap in extant knowledge by investigating the experiences of people with intellectual disabilities and their families during the first three months of the Russian invasion of Ukraine.

Method

Participants

In total, five people participated in the study, who were all actively involved in providing support to people with intellectual disabilities and their families in Ukraine. Three of them had lived in Ukraine their entire lives and were affiliated with healthcare organisations providing support to people with intellectual disabilities in the country. The remaining two participants were affiliated with aid organisations providing support to Ukrainian refugees – including those with intellectual disabilities – and had deep rooted connections with Ukraine, insofar as they had visited the country many times and had weekly or even daily contact with their contact persons in the country, both prior to and during the war. The participants in this study had diverse backgrounds, ranging from human geography to social work, psychology, and psychiatry. Further demographic information about the participants is presented in Table 1.

Table 1. Characteristics of participants.

	Participants (Pseudonyms)
Variable	Marcus	Peter	Anna	Natasha	Sofia
Sex	Male	Male	Female	Female	Female
Age (years)	65	70	62	44	47
Role	Director of humanitarian organisation for people with ID living in Ukraine	Consultant at humanitarian organisation –psychiatry	Board chair of Charity Association for Persons with ID	Director of methodological Early Childhood Intervention Centre	Vice-director and head of Early Intervention Department
Years of experience working with people with ID	16 years	31 years	28 years	13 years	21 years
Country/region	Netherlands (daily contact with Ukraine)	Netherlands (weekly contact with Ukraine)	North-central part of Ukraine	Southern part of Ukraine	Western part of Ukraine

Procedure

Given the fragile and stressful situation of the participants, we deemed it crucial to exercise utmost care in our approach and obtain ethical approval from a review board to address any potential ethical concerns that may arise during the study. After ethical approval was granted by the Ethics Review Board of Tilburg University (RP494), a snowball sampling procedure was utilised to recruit the participants. Snowball sampling is a purposeful method of data collection in qualitative research and is frequently used when access to one’s specified target group is difficult (Naderifar, Goli, and Ghaljaie 2017). We started with two initial contacts (Marcus and Peter), with whom the last author had contact based on prior shared experiences in Ukraine. After being introduced by the last author, the first author sent them both an information letter and informed consent form via email. After they expressed interest in participating and provided their written informed consent, an appointment was made to conduct an interview. After the interview, the participants were then asked, in accordance with the snowball sampling procedure, to recommend other contacts who matched the inclusion criteria (i.e. 18 years of age or older and actively involved in providing support to people with intellectual disabilities and their families in Ukraine) and who might also be willing to participate, which, ultimately, resulted in three additional participants. All five participants voluntarily agreed to take part in the study and provided their written informed consent.

All the participants took part in semi-structured interviews that were conducted via a video conferencing tool (i.e. Microsoft Teams or Zoom). Due to the poor internet connection of one participant, the interview was interrupted and subsequently took place via a phone call. The interviews were recorded using the record function within Microsoft Teams, or, in the case of the telephone interview, a voice recorder, and transcribed verbatim. In all cases, the interviews were conducted by two researchers to ensure that the full range of experiences of the participants were captured, especially when the interviews were conducted in English (which was the case with Anna, Natasha, and Sofia), as this is not the first language of either the participants or the researchers. The interviews lasted between 28 to 58 min, with an average length of 47 min.

Interviews

A semi-structured interview guide was developed to explore the perspectives of the participants who were supporting people with intellectual disabilities and their families in Ukraine. The guide consisted of two substantive topics. With respect to the first topic, participants were asked to elaborate on the circumstances of people with intellectual disabilities and their families who were living in Ukraine during the war. This part consisted of questions such as: ‘What does a day in the life of a person with intellectual disabilities and their family look like in the current situation?’ and ‘Who takes care of people with intellectual disabilities in the current situation?’. In the second part of the interview, participants were asked about the process by which people with intellectual disabilities and their families could flee the country due to the war. This segment contained questions such as: ‘Could you describe the process that people with intellectual disabilities and their families go through when they decide to seek refuge elsewhere?’ and ‘How is the refuge for people with intellectual disabilities arranged?’. At the end of the interview, participants were asked to express their thoughts towards the long-term impact of the war for people with intellectual disabilities and their families. The interview guide can be requested from the corresponding author.

The interviews took place between 30 March and 13 May 2022. During this period, the war in Ukraine had been going on for one to two-and-a-half months, including daily bombings and battles in certain areas, especially in the east and south of the country (BBC 2022). Cities in the western part of Ukraine remained relatively safe at that juncture, and served as a humanitarian hub where people could find refuge before crossing the border to neighbouring countries (Red Cross, 2022). The degree of safety experienced by each of the participants strongly depended on their location at the time of the interview, with Natasha and Sofia residing in the southern and western parts of Ukraine, respectively.

Data analysis

The transcripts of the interviews were analysed using the six-phase process of thematic analysis (Braun and Clarke 2006). First, two authors read the transcripts from all the interviews in detail, in order to familiarise themselves with the transcripts. Second, the same two authors independently coded three of the interviews and inductively generated initial codes related to relevant extracts from the interviews. Since the snowball sampling procedure led to the two Dutch interviews being conducted and analysed first, we coded all the interviews in Dutch for ease of clustering the codes into themes. Any disagreements were discussed with the other authors. The remaining two interviews were then coded by the first author. Third, the first author studied the codes and grouped similar codes together, before then collating them into potential themes. Next, these potential themes were critically examined and discussed by all authors for internal homogeneity, external homogeneity, coherence and relevance, which, in turn, resulted in various stages of refinement (step 4). Fifth, both the constructed themes and a narrative structure with accompanying descriptions were jointly defined by all the authors. Finally, the present paper, which include vivid and compelling extracts from the participants’ accounts, was written by all the authors.

Results

Five overarching themes emerged from the data: 1) The physical and mental well-being of people with intellectual disabilities was threatened due to a lack of fulfilment of basic needs; 2) People with intellectual disabilities experienced difficulties in finding safety within air-raid shelters; 3) People with intellectual disabilities and their families could only flee the country with help and support; 4) Creative solutions were developed to help keep in touch with and support people with intellectual disabilities and their families; and 5) Fear regarding the quality of life of and support for people with intellectual disabilities in the near future.

Theme 1: the physical and mental well-being of the participants was threatened due to a lack of fulfilment of basic needs

During the interviews, the participants provided insight into the basic necessities of people with intellectual disabilities in Ukraine during the war. Like other people who remained in the country, alongside the desperate need for a safe living environment, people with intellectual disabilities were also in need of food, (drinking) water, hygiene products, medicine and money. The lack of fulfilment of these basic necessities threatened to jeopardise their physical well-being.

Even now, most people do not have the possibilities to buy diapers, medicine or even food, although this is urgently needed. Therefore, we deliver every two weeks food and hygiene products to them. (Natasha)

In addition to the impact on physical well-being, the participants indicated that the war had also had a major impact on the mental well-being of people with intellectual disabilities. For example, one respondent indicated that people with intellectual disabilities were more likely to be dependent on psychotropic drugs, which meant that the prevailing lack of medication also had a notable impact on their mental well-being. Moreover, the participants stated that although the fear of violence, combined with the lack of basic necessities such as food and (drinking)water, was a source of considerable stress for everyone living in Ukraine, this had a particularly deleterious impact upon people with intellectual disabilities as they experienced greater difficulties in understanding the situation they found themselves in.

The greatest stress for people with intellectual disabilities is the change brought about in everyday life, because they have difficulties tolerating changes to the people around them, changes in their physical surroundings and changes to their activities […]. And the greatest need is, of course, safety just like everyone else in Ukraine and, of course, basic needs which vary from family to family. (Anna)

With respect to the specific situation of people with intellectual disabilities residing in large residential facilities, the participants indicated that the situation service users found themselves in differed across each facility, depending on the location of the facility in the country and the related security situation in the facility as a result of the war. The aforementioned lack of fulfilment of basic necessities also applied to a large proportion of residential facilities. According to the participants, this applied to residential facilities in war zones and beyond, as in some cases facilities in war zones were evacuated and merged with facilities in relatively safe parts of Ukraine. As a result, these residential facilities were now even more overcrowded than before, resulting in additional shortages of staff, places to sleep, food and medicine. In addition, the participants reported that many of the direct support staff who worked in residential facilities, especially those located in war zones, had fled to either safer parts of Ukraine or abroad. Consequently, the people with intellectual disabilities who remained in these facilities often had little help or support.

For those people with intellectual disabilities who lived with their families, the war not only impacted on their own mental well-being but also profoundly affected the mental well-being of their family members. For example, according to the participants, family members, and especially mothers, were more likely to experience frequent panic attacks, sleeping problems and other stress-related complaints due to the war. This is due, in part, to the fact that in many cases mothers were forced to take care of their child with intellectual disabilities alone, as fathers were fighting in the war, which also exacerbated the uncertainty felt by the mothers. Furthermore, in many instances professional outreach support had left and fled to either safer areas in Ukraine or abroad.

Theme 2: people with intellectual disabilities experienced difficulties in finding safety within air-raid shelters

The participants indicated that the chances of people with intellectual disabilities finding suitable shelter are generally limited. They reported that in large parts of Ukraine, the frequent sounding of the air-raid siren caused considerable stress, particularly for people with intellectual disabilities, as they are less able to understand what is going on at these moments, to react quickly, and to adapt to these rapidly changing situations. The participants described that whether or not people with intellectual disabilities stayed at home or left their familiar surroundings to seek safety in an air-raid shelter often depended on the day itself and the specificity of the moment. As a result, families who have a family member with intellectual disabilities frequently (have to) decide to stay in their homes. Besides the fact that it can be mentally challenging for people with intellectual disabilities to move to an air-raid shelter, air-raid shelters are also physically difficult or sometimes even impossible to access for people who are also wheelchair users. In these instances, family members have to be able to lift the person into the basement, otherwise it is simply not possible for them to leave their homes.

Panic in particular tends to grip people with intellectual disabilities more than, shall we say, an average person when the bombs fall or there is shooting. […] They just can’t get to the safety of shelters. That’s impossible. They panic to such an extent that… no. They can’t stay there. (Marcus)

Theme 3: people with intellectual disabilities and their families could only flee the country with help and support

The participants first described all kinds of initiatives that were introduced to help refugees – including refugees with intellectual disabilities – both within Ukraine and who were making their way to foreign countries. For example, one respondent – whose healthcare organisation is based in the south of Ukraine – had observed a constant stream of refugees arriving. In addition, another respondent indicated how the healthcare organisation in which she works, which is located in the west of the country, accommodates refugee families who have a family member with intellectual disabilities from other parts of Ukraine. This healthcare organisation ordinarily provides support to adolescents with intellectual disabilities, who live in group homes and learn to live independently; these group homes were now entirely being used to accommodate refugees with intellectual disabilities and their families.

The participants indicated that one of the most important conditions for fleeing abroad for people with intellectual disabilities is that family members flee with them and provide support for them, both during the journey and once they are abroad. Thus, generally speaking, people with intellectual disabilities are unable to flee without their family. According to the participants, people with intellectual disabilities – together with their family members – are often dependent on support from aid organisations when fleeing. This is because they or their family members are less likely to have their own means of (adapted if necessary) transport, and are not always able to use collective transport, either because their physical disability prevents this or because it is too much of a burden for them due to the challenge of processing too many (new) stimuli. The participants also expressed that the financial situation of people with intellectual disabilities and their family members often means that they are not able to afford the fee needed to flee themselves, and, as such, are often dependent on coming into contact with one of the parties that provide assistance with this process. The participants referenced several parties that, in collaboration with non-governmental organisations (NGOs) from various countries, help people to flee from Ukraine to safer countries. For example, for some families this process is organised through connections with the church, while for others it is done via care organisations, such as, for example, an ‘Early Intervention Centre’, parent initiatives, or an association for people with intellectual disabilities.

People from different parts of Ukraine, they come to Odessa and then they move to other places, to western Ukraine or Moldova or other countries. So each day, we have lots of people, families, some of them are with disabled adults and children (…). Also, we can provide them with information about where they can get humanitarian aid because, of course, we cannot support all the families who need that, but we know a lot of other organisations who can help. (Natasha)

It is discernible that people with intellectual disabilities and their family members – who are often women because the men are mostly fighting in the war – regularly want to both flee as a group (i.e. several families with family members with intellectual disabilities) and stay together in the end location, so that they can support each other, both during and after fleeing. For example, one respondent indicated how several families rejected the chance to flee to the United Kingdom as they would be accommodated individually as a family in various accommodation centres.

For example, recently one British organisation offered Ukrainians an individual form of aid, allowing them to flee abroad individually and be individually placed in accommodation in Britain, and nobody, although our network was in 100 organisations, nobody wanted to go to Britain individually because it is too difficult to go, both in terms of withstanding the trip itself and in terms of being alone once they arrive. (Anna)

As described in Theme 1, people with intellectual disabilities living in large residential facilities were in some instances evacuated to other facilities in safer parts of Ukraine. When there are no family members involved, people in residential facilities are completely dependent on the options organised by the government or NGOs that actively organise shelter within safe accommodation.

Theme 4: creative solutions were developed to help keep in touch with and support people with intellectual disabilities and their families

Although outreach support for people with intellectual disabilities in their homes often ceased as a result of the war, the participants indicated how professionals, who had sometimes fled either to other parts of Ukraine or abroad, were looking for ways to stay connected remotely with the service users they previously supported; where possible, they offered support via telephone or video calling. One respondent stated that the rapid switch to online support during the war might have been a direct result of the COVID-19 pandemic, as family members and professionals had already become accustomed to digital forms of support.

Well, that demand for support has only increased now. Some of the parents themselves have fled, and the war is causing a lot of stress, and what is striking is that the people here now, although only a few staff members have remained in the Kharkiv region or elsewhere in Ukraine, that they continue to provide that care online. That is really striking: you’re a refugee yourself, you’re here or in some other part of Ukraine, some of the parents have also fled, and despite all that they still reach out and provide that support online. That really is something quite special, and is most likely a result of the pandemic. (Marcus)

Alongside these aforesaid attempts by professionals to continue to provide outreach support to people with intellectual disabilities, various other initiatives emerged from parent collectives to help inform each other about possible flee options, news updates, and offer mental support via social media and (video) calls. For example, one respondent indicated that there is an active chat group amongst family members in which they provide information on, amongst other things, the locations of accommodation and escape routes to each other. The participants felt that family members experience a lot of mutual support and understanding through these groups.

For a long time in Kyiv you couldn’t get from one bank of the river Dnipro to another bank of the river Dnipro and then it was restored, and they informed each other about that and also in Kiev they informed each other about the pharmacies that worked and about the shops because there was limited provision of food. You couldn’t go into some markets and shops as well, so they informed each other about those which were open, but particularly what kind of humanitarian aid was available and how to get it. (Anna)

Theme 5: fear regarding the quality of life of and support for people with intellectual disabilities in the near future

The participants expressed that they frequently feared that the impact of the war will lead to major setbacks related to the support and care for people with intellectual disabilities in Ukraine. According to the information provided by the participants in the present study, in recent years, there has been a development towards a more community-based, outreach form of support for people with intellectual disabilities and their family members, in combination with daytime activities, in several places in Ukraine. According to the participants, people with intellectual disabilities who now live at home with their families run the risk of having to live in a large residential facility after the war. These fears are based on the belief that the war will cause a major poverty trap in the country, which, in turn, will mean that all family members will have to work after the war and, hence, will no longer be able to care for the family member with intellectual disabilities. The participants also feared that many fathers and sons will be injured or even die in the war and thus will no longer serve as the breadwinners in their families.

The participants also reported that day care centres and other care organisations such as ‘Early Intervention Centres’ have been destroyed in the war, and that they fear that there will be a lack of financial resources and manpower to subsequently rebuild these centres. According to the participants, the government should seek to invest in community-based organisations in order to prevent a return to the old system, although they also expressed reservations about the progress of the initiated reforms. One respondent stated that she had always dreamed of a future for Ukraine without large residential facilities and now feared that, as a result of the war, the care for people with intellectual disabilities will return ‘back to square one’.

Discussion

This study explored the predicament of people with intellectual disabilities and their families during the first three months of the Russian invasion of Ukraine (March - May 2022), which resulted in five overarching themes. In accordance with reports from prior armed conflicts (e.g. Grove, Grove, and Myerscough 2010), the participants in this study were adamant over the fact that both the physical and mental well-being of people with intellectual disabilities and their families were threatened by a lack of fulfilment of basic needs. Although this lack of fulfilment of basic needs applies to everyone in Ukraine at this juncture, the participants expressed how people with intellectual disabilities and their families were especially affected in specific ways. One reason for this is that people with intellectual disabilities can be more dependent on, amongst other things, medicine and hygiene products (e.g. diapers). Moreover, people with intellectual disabilities also appeared to experience higher levels of stress due to both this lack of fulfilment of basic needs and difficulties with understanding the situation they found themselves in. Alongside this, the participants noted the difficulty that people with intellectual disabilities and their families encountered when seeking safety in air-raid shelters. Indeed, while the accessibility of air-raid shelters is an essential condition for reducing the physical threat of attacks, several studies have shown that disaster plans, which, amongst other things, describe how to evacuate to air-raid shelters, do not take account of the specific needs of people with (intellectual) disabilities (Fox et al. 2005; Kendall-Tackett and Mona 2005). In this respect, the results of the present study thus stress the need to include people with intellectual and physical disabilities in the preparation of civil defence against danger, such as air-raid attacks.

The present study also highlights the resourcefulness of people with intellectual disabilities, their families, and professionals in facilitating both peer-based and professional forms of support during conflicts, namely how staff attempted to continue their outreach support remotely, using digital technology, for people with intellectual disabilities. These creative solutions to help keep in touch and provide support remotely to service users were also observed during the COVID-19 pandemic, where people with intellectual disabilities, their families, and professionals were also confronted with a situation in which regular support could not take place. Although the COVID-19 crisis was inherently different to the conflict in Ukraine, it also helped to bring about many creative solutions to continue support for people with intellectual disabilities and their families remotely (e.g. Embregts et al. 2022; Zaagsma et al. 2020).

Finally, the participants were unanimous in their fear that future attempts to rebuild Ukrainian society may involve rebuilding large-scale residential facilities as opposed to placing more emphasis on the development of early intervention centres. Inclusion Europe, which represents people with intellectual disabilities in Europe, have advocated for the importance of investing in community-based care, such as early intervention centres, when trying to rebuild Ukraine, rather than (re)building old-style residential facilities (Inclusion Europe 2022b). To achieve this, it is vital to acknowledge the relevance of advocacy groups for people with intellectual disabilities, namely in terms of emphasising the need for sufficient resources and for building an inclusive society (Inclusion Europe 2022b; Rohwerder 2013). According to Rohwerder (2013), the general invisibility of people with intellectual disabilities, who are already in a vulnerable position due to the nature of their disability, during conflict situations has an unjustifiably negative impact upon them. Moreover, similar to the COVID-19 pandemic, the present situation in Ukraine has also revealed a number of limitations to be addressed in the near future, such as, for example, the lack of inclusion of people with intellectual disabilities in society (Inclusion Europe 2022b). Therefore, in the future, it is important to emphasise that there is a need for change, namely in terms of proactively including vulnerable people in strategies concerning humanitarian aid, both with respect to the Russian invasion in Ukraine and other (future) conflict situations.

Based on the present findings, some key recommendations can be formulated. In light of the present findings, it is important to recognize the relevance of Article 11 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which addresses situations of risk and humanitarian emergencies. Our study findings align with these principles, emphasizing the need to ensure the safety, well-being, and inclusion of people with intellectual disabilities and their families during conflicts. By incorporating the principles of Article 11 into humanitarian aid strategies, governments and organizations can proactively address the specific needs and rights of people with intellectual disabilities in times of crisis. Furthermore, it is imperative to emphasize the importance of international support in advancing the movement towards inclusive community-based care, including the establishment of early intervention centres instead of large-scale residential facilities. Collaborating with advocacy groups and highlighting the necessity for adequate resources and an inclusive approach can further support and include vulnerable individuals, especially during times of crisis. During times of natural disasters or conflicts, it is crucial to support people with intellectual disabilities and their families by addressing their specific needs. This includes ensuring the fulfilment of basic necessities, such as medication and hygiene products, recognizing their increased dependence on such resources. Embracing the use of technology can also facilitate remote support and communication, allowing for continued assistance even when in-person interactions are limited. By incorporating these recommendations and principles, we can create an environment that effectively supports and includes vulnerable individuals, especially during times of crisis.

The results of the present study should be interpreted in light of some limitations. First, finding participants during these challenging times proved to be difficult, which, in turn, resulted in a relatively small sample size. Consequently, the generalisability of the findings is unknown. Second, using snowball sampling as a method of recruiting participants runs the risk of having a selection bias from the start of the interviews. In an attempt to carefully mitigate this risk, we ensured that all the participants fitted the inclusion criteria, and after every interview, the research group reflected on the interview and how the data from the interview related to the research question of the study. Third, in this study we interviewed participants who are supporting people with intellectual disabilities and their families in Ukraine. Hence, neither people with intellectual disabilities themselves nor their families were interviewed. Although it is important to explore the first-hand experiences of these people in the near future, here we deliberately opted to interview people involved in providing support to people with intellectual disabilities and their families. It is worth noting that the professionals had access to the internet, which facilitated communication and allowed us to establish contact more conveniently. Engaging with these professionals provided valuable insights without placing additional burdens on people with intellectual disabilities themselves or their families. Lastly, it is important to acknowledge that three out of the five interviews were conducted in English, which posed a potential language barrier for both the interviewers and interviewees, as English was not their native language. This language difference may have hindered the effective communication of certain questions and answers during the interviews. To mitigate the risk of miscommunication, the interviewers took proactive measures by consistently rephrasing the participants’ responses to ensure accurate understanding. However, it is worth noting that conducting the interviews in English may have deterred other potential participants from coming forward. Additionally, participants themselves might have been reluctant to fully express their opinions due to the constraints of communicating in a non-native language.

To conclude, this study provided insight into the situation of people with intellectual disabilities and their families during the first three months of the Russian invasion in Ukraine. Specifically, the study showed how the war signals a profound threat to both the physical and mental well-being of people with intellectual disabilities and their families. Having access to basic needs as well as having the opportunity to seek either shelter during air-raid sirens or refuge elsewhere is especially challenging for this group. Furthermore, the study provided insight into the participants’ fears over the quality of life of and support for people with intellectual disabilities in the near future. In so doing, the present study shed light on the feelings of helplessness and dependency experienced by people with intellectual disabilities and their families, while, simultaneously, underscoring the need for change, namely in terms of proactively including vulnerable people in strategies for humanitarian aid in conflict situations.

Acknowledgements

We would like to thank the participants who took part in this study.

Disclosure statement

The authors report there are no competing interests to declare.