‘I did not even receive even a phone call from any institution!’: experiences and recommendations related to disability during COVID-19

Abstract

Background: Individuals with disabilities and their families, among the disadvantaged groups in society, have encountered increased hardships accessing support and services in various social contexts, such as education, health, transportation, rehabilitation, and social services. Thus, it is essential to examine parents’ experiences as a background catalyzer to improve the currently available services and provide psychological and social support. This study examined the experiences of families of children with disabilities who were in Turkey during the pandemic’s early stages, and yielded suggestions based on these experiences.

Method: A phenomenological design was used in this study, and semi-structured interviews were conducted with 10 parents of children with disabilities.

Findings: Three themes emerged from data analysis: (a) quarantine, (b) education, and (c) children with disabilities.

Conclusions: The findings revealed the importance of taking necessary precautions for individuals with disabilities and their families to access social services. Additionally, findings underline the essentiality of providing psychological support to families while providing and extending family education.

Introduction

Coronavirus disease outbreak (termed as COVID-19 hereafter), which started in Wuhan, China and spread worldwide quickly, was declared a global pandemic by the World Health Organization (WHO) in March 2020 (Esentürk, 2020). Since the rapid spread of COVID-19 resulted in a massive loss of lives, many countries responded to its effects with various levels of daily-life interruptions to eliminate overspreading with restrictions in areas such as health, education, transportation, and social life. Undoubtedly, one area most affected by these restrictions is education. The interruption of formal education at primary, secondary, high school, and university levels to prevent the spread of the COVID-19 in educational institutions affected approximately 1.5 billion students and 63 million educators in 188 countries (United Nations Educational, Scientific and Cultural Organization [UNESCO] 2020). Furthermore, as COVID-19 created a crisis context around the world, many countries experienced a fast transition to distance education as a response to the interruption of education in all educational establishments.

However, examination of the UNESCO (2020) report illuminated the inequalities that accompanied this process. The underlined inequalities within this report include inadequate infrastructure for the participation of disadvantaged groups in the learning process. When the jurisprudence of the European Convention on Human Rights is taken as the reference, the term disadvantaged groups includes many individuals in society, such as women, minorities, immigrant/refugee/asylum-seeking children, individuals with diverse sexual orientations, children with low socioeconomic and/or underprivileged status, children at risk, and children with disabilities (CWD) (Atmacaoğlu 2019, Chapman and Carbonetti 2011). The UNESCO (2020) report also underlines the difficulties and burden experienced by these disadvantaged groups, and the situation is extended to their close social circles and families. The hardship experienced by families includes meeting additional needs and increasing expectations from them due to this inadequate infrastructure, including families’ involvement in their children’s learning process during the pandemic (UNESCO 2020). The report also highlighted that these consideration points affected various stakeholders within the education and learning process and increased inequality experiences (UNESCO 2020). Thus, different countries implemented various resolutions to eliminate these inequalities, such as providing free access to the Internet, supplying computers and other hardware, and establishing hotlines.

The Republic of Turkey (Turkey hereafter) is one country that continued to provide formal education as distance education with the elongated restrictions caused by COVID-19. Besides distance education, the Ministry of National Education (MoNE) debriefed information about the process and prepared guidebooks for families and teachers. Additionally, support units were established in schools for students with limited or no access to computers and the Internet (MoNE 2020a, 2020b). Supporting disadvantaged students because of socioeconomic factors (e.g. poverty) by establishing support units might be an essential step in meeting their needs for participating in formal education and learning processes. However, the disadvantaged student group is composed not only of students who experience poverty and other sociocultural differences. Individuals with disabilities (IWD) are included in this group and experienced hardships both in education and health services during COVID-19 (Aishworiya and Kang 2021). Examination of the MoNE activities for students with disabilities shows that videos were created within the ‘Education Information Network’, activity plans were shared, and a mobile application named ‘I am special, I am at home’ was developed (Özer 2020). The disability concept consists of different disability groups. Therefore, the individual differences and support needs of students with disabilities impose additional limitations on support and services provided during COVID-19.

While the general global population was affected by COVID-19 regardless of their demographic differences, its physical, mental, and social effects created additional vulnerability for IWD (Aishworiya and Kang 2021, Clegg 2020, Courtenay and Perera 2020, Embregts et al. 2020, Gulati et al. 2021, Hassiotis et al. 2020, Landes et al. 2020, Mutluer et al. 2020, Bent et al. 2020). Therefore, additional caution points should be considered while providing services during the pandemic, including (a) the risk of infection of IWD (Eshraghi et al. 2020, Jumreornvong et al. 2020); (b) the care of IWD who are infected (Landes et al. 2020); (c) full disclosure and notification of measures taken and restrictions imposed on IWD (Courtenay and Perera 2020, den Houting 2020, Embregts et al. 2020, Hassiotis et al. 2020, Jumreornvong et al. 2020); (d) psychological and mental health support for IWD (Courtenay and Perera 2020, Eshraghi et al. 2020, Hassiotis et al. 2020); (e) restructuring ongoing treatment (Jumreornvong et al. 2020) and education processes; and (f) supporting families and primary caregivers with IWD (Courtenay and Perera 2020, Eshraghi et al. 2020, Karahan et al. 2020, Stenhoff et al. 2020).

A relevant literature review on the COVID-19 process underlined the high mortality rate of individuals with developmental disabilities (Landes et al. 2020, Stevens and Landes 2020), and these individuals are at a higher risk of COVID-19 infection due to the malfunction of social distancing and setbacks on other precautions (Eshraghi et al. 2020, Hassiotis et al. 2020). Additionally, the measures taken (e.g. wearing masks, maintaining social distance, and avoiding crowded environments and restrictions applied (e.g. curfew restrictions, and closure of shopping centers, schools, and other social community areas) might have adverse effects on IWD’s psychological and mental health (Lim et al. 2020), which might cause anxiety disorder and nervousness (Aishworiya and Kang 2021, Courtenay and Perera 2020, Eshraghi et al. 2020, Hassiotis et al. 2020, Lim et al. 2020, Mutluer et al. 2020). Families report that their children’s general levels of understanding affect children’s knowledge and realization of the COVID-19 process (Asbury et al. 2021). While some families stated that their children were not affected by COVID-19, others provided information on the effects of this process (Bent et al. 2020). There are various stress-imposing situations within this process for both IWD and their families, including the inability to continue attending school, lack of provision of support networks, deterioration of daily routines, and participation of families within the education process without any training (Aishworiya and Kang 2021, Asbury et al. 2021, den Houting 2020, Eshraghi et al. 2020).

Studies examining families’ or carers’ experiences, perceptions, perspectives, and opinions about COVID-19 and process (Asbury et al. 2021, Bent et al. 2020, Cahapay 2020, Coizzi et al. 2020, Karahan et al. 2020, Majoko and Dudu 2020, Manning et al. 2021, Meral 2021) show that families felt stressed and anxious during this process (Bent et al. 2020, Cahapay 2020, Meral 2021), felt overwhelmed (Asbury et al. 2021, Karahan et al. 2020), and their social, financial, and educational support networks decreased (Asbury et al. 2021, Manning et al. 2021). Additionally, studies underline an increase in problematic behaviors (Colizzi et al. 2020, Karahan et al. 2020, Manning et al. 2021). Meral (2021) focused on parental views on the pandemic for families with CWD. According to Meral’s study, COVID-19 introduced negative situations to our lives, such as anxiety, boredom at home, and experiencing unprecedented times with unpredictability. In contrast, COVID-19 also brought positive elements, such as increased interaction (especially dad-child interaction), increased COVID-19 awareness of CWD, and skill acquisition and incidental teaching opportunities (Meral 2021). Literature review illuminated the dense group of studies focused on families’ experiences and perceptions of the pandemic process. Since family structures are unique, a broader perspective is beneficial to understand the complex nature of this process. Therefore, the current study not only involves families’ feelings but also incorporates families’ experiences and suggestions during the pandemic. It is essential to examine these aspects and use them as an anchor to plan and improve practices and provide support. Pandemics and natural disasters are unexpected and yield uncertainty. A critical step in minimizing this uncertainty includes highlighting the experiences for revisiting the planning of social processes to decrease the current tension and increase readiness for similar situations. Thus, the purpose of this study was to examine the experiences of families who have CWD in Turkey during the COVID-19 pandemic and provide suggestions for implementation and further research. Three relevant research questions were addressed: (a) How did these processes affect families with CWD? (b) What were the educational experiences and difficulties during the pandemic? and (c) What are families’ suggestions?

Method

Study design

This study is qualitative research conducted with a phenomenological approach to examine the data in depth based on an interpretative paradigm. Phenomenology is a qualitative research method that allows people to express their understanding, feelings, perspectives, and perceptions about a particular phenomenon or concept, and is used to describe how they experience this phenomenon (Rose et al. 1995). The most important feature of phenomenology that distinguishes it from other approaches is its basis on the assumption that ‘common experiences have an essence’ (Patton 2002). For this reason, this method was chosen to reveal the common experiences of CWD and their parents on the phenomenon of special needs/disability during COVID-19 pandemic quarantine days.

Participants

Qualitative research, unlike quantitative research, can focus on purposefully selected samples of relatively small groups to gain an in-depth understanding of a phenomenon (Patton 2002). Criterion sampling, one of the purposeful sampling methods, was used to gather the study sample of 10 parents of CWD living in different geographical regions of Turkey. The data collection process was carried out by conducting semi-structured interviews. The eligibility criterion was being the parent of a CWD who continued formal education and stayed at home due to COVID-19. Parents known to the first author contacted potential participants who were assigned numbers for anonymity (e.g. P01, P02, … P10) based on the interview schedule. Tables 1 and 2 show demographic information on participating parents and their CWD, respectively.

Table 1.

Demographic information on participants.

Code	Age	Parent	Education	Job	Workinga	Interview date	Interviewb
P01	40	Mother	Undergraduate	Business	No	04.14.2020	38
P02	40	Mother	High school	Housewife	No	04.15.2020	26
P03	41	Mother	Elementary	Housewife	No	04.15.2020	27
P04	32	Father	Undergraduate	Worker	No	04.15.2020	28
P05	30	Mother	High school	Housewife	No	04.16.2020	22
P06	40	Mother	Undergraduate	Worker	Yes	04.16.2020	24
P07	35	Mother	High school	Accountant	No	04.17.2020	34
P08	48	Mother	Elementary	Housewife	No	04.18.2020	28
P09	37	Mother	Elementary	Housewife	No	04.18.2020	37
P10	34	Mother	Elementary	Housewife	No	04.18.2020	23

Note.

^a Working during the pandemic process.

^b Interview length measured in minutes.

Table 2.

Demographic information on the participants’ children.

Code	Age	Gender	Disability	School type	Sibling(s)	Living condition	Going out of homea	Caregiverb
PC01	12	Male	Autism	Inclusion	1	SFH	No	Mother
PC02	12	Male	Autism	Inclusion	3	SFH	Yes	Mother
PC03	12	Female	Autism	SES	2	Apartment	Yes	Mother
PC04	6	Male	Autism	SES	2	Apartment	Yes	Mother
PC05	5	Male	ID	–	–	Apartment	Yes	Mother
PC06	5	Female	ID	Nursery	2	SFH	Yes	Mother
PC07	5	Male	ID	Private kindergarten	1	Apartment	No	Mother
PC08	14	Female	ID	Inclusion	2	SFH	No	Mother
PC09	11	Female	ID	Inclusion	1	SFH	No	Mother
PC10	10	Male	Autism	SES	3	Apartment	Yes	Mother

Note.

^a Going out of the home during the pandemic process.

^b Caregiver during the pandemic.

ID = Intellectual Disability; SES = Special Education School.

Procedure

Developing interview questions

We developed semi-structured interview questions, and the made relevant revisions based on the opinions of two experts with PhDs in the special education field. We conducted a pilot interview with a parent to test the seven draft interview questions and subquestions. The questions addressed how parents spent time with their CWD at home during the quarantine, their CWD’s educational and learning processes, and support and services they received in general. Ethical approval was provided by the Ethics Committee of Nevsehir Haci Bektas Veli University (PN: 11020).

Data collection

After the pilot interview, one of the authors (AK) made interview appointments with participants within their availability via messaging. The interviews were conducted over a mobile phone, using the WhatsApp application. The interviewer collected voice records during the interviews for further transcription purposes.

Data analysis

Descriptive analysis and content analysis techniques are generally used in the analysis of qualitative data. Content analysis is used to make replicable and valid inferences from texts or other meaningful materials (Krippendorff 2004). In content analysis, codes, categories, and themes are created by the researcher’s own efforts and by examining the texts closely (Patton 2002). Data collected using the semi-structured interview method were analyzed in-depth with the content analysis method. Each recorded interview was transcribed in detail on a computer. An average of 28-min interviews resulted in a total of 147 pages of transcripts. Color-coding was used in a Microsoft Office Word document for each participant’s interview first to reveal the meaningful chunks. The transcripts were read three times separately, and significant whole chunks constituted codes. Further categories were created from codes, and categories were gathered within themes. The final content analysis resulted in three themes and 19 categories presented within the findings section of this report.

Coding reliability

Miles and Huberman’s (1994) formula (Reliability = Consensus/Consensus + Disagreement) was applied to ensure coding reliability. Accordingly, the consensus among coders should be higher than 80%. To ensure coding reliability in the study, half of the interview transcripts randomly selected by another specialist with a PhD in special education were coded independently. When compared, the number of codes with consensus was 81 and with disagreement was 12, and the coding reliability rate was 86%. Code disagreements were discussed. Consensus was reached on eight codes, and the other four codes were excluded from the research.

Findings

Three themes and 86 frequencies were obtained as a result of the analysis of responses given to the semi-structured interview questions, including quarantine, education, and CWD. Themes and frequencies on themes emerging from the content analysis are presented in Table 3.

Table 3.

Frequencies on themes.

Quarantine	f
Anxiety	7
Psychological support	7
Help	5
Quarantine explanation	5
Uncertainties	4
Suggestion	4
Education	f
Distance education	9
Parents’ education	5
Teacher attention	5
Home study	4
Teacher coming to the home	4
School support	4
Communication with teacher	4
Materials	3
Yearning for school	3
Distance live one-on-one education	2
Children with disabilities	f
Time spent at home	6
Socialization	5
Value	4

Note. f: frequency.

Quarantine

This theme underlines the parents’ anxiety, psychological support needs, the uncertainties they experienced, the help they received, how they explained this situation to their CWD, and their suggestions for the quarantine process.

Regarding parents’ anxiety during the quarantine process, P05 expressed concerns about her child’s education process by stating, ‘I am afraid my child will deteriorate’. Additionally, P10 expressed concerns about meeting her child’s care needs and her own health: ‘…for example, if something happens to me, who will take care of him?’ P06 brought up the need for psychological support by stating that ‘before the child, I think the families need support, in a psychological manner’. P09 emphasized that no public institution for CWD provided any support, help, or aid during the quarantine process:

I did not even receive even a phone call from any institution, our school, the Ministry of Family, or the Ministry of Internal Affairs. In other words, we didn’t experience even making how we were doing, let alone help and aid.

Regarding how parents explained the quarantine concept to their CWD, P01 provided this information:

… first I said that the school was in a break and would be opened in May but as the time passed, [I said] I think it will not be opened in May. I [start saying that] it would maybe open in September; [the child] could not make sense [of it]. I showed him the doctors who wore masks on television and said that these uncles [doctors] got sick, thus they cannot open the school.

P01 expressed concerns about the uncertainty brought by COVID-19:

We are so used to living an organized life! He gets very angry when I say that we might not do the many things that he planned for summer, and the uncertain process ahead us will sweat us a lot.

Parents had also made suggestions solely on the quarantine process. P09 suggested,

The teachers of each institution should have kept the family energetic by preparing a daily or at least weekly program for all of their students. One day of the week or, I don't know, every 10 days, whenever her turn comes; for example, our child could have a live WhatsApp conversation with her teacher; it could take a very short time; it could be 5 min; she could sing with [the teacher]. Because it would be an incredible motivation for my daughter.

Education

This theme includes parents’ thoughts about distance education, school and material support they received, home study with their CWD, and their suggestions. On the subject of education, which was provided through remote communication tools on quarantine days, P01 stated that ‘… each child is special in himself/herself; distance education is not for us. How can [the teacher] lecture on what and in which amount without knowing the child’s performance?’ and expressed that distance education is not individualized. Another parent, P03, provided an opinion about the dysfunctionality and inefficacy of distance education:

… of course, there is nothing on the basis of education. There are television programs in education provided by the government. To me, it is best if they are not provided; I label them as a waste of expense for nothing.

Regarding the attention shown by teachers to CWD, P02 stressed the lack of parent-teacher communication about their child’s education during the quarantine period, with the statement that ‘I have never met with his teacher because [the teacher] never did a one-on-one lesson with him’. P02 expressed opinions on the inability to support CWD during home study during the quarantine process by stating that ‘… teacher [interviewee was referring to the interviewer], we cannot do education at home anyway. I have no use for it. As an extra thing, it’s enough if he doesn’t forget what he learned’. Almost half of the parents wanted teachers to come to their homes despite the COVID-19 outbreak. In this regard, P04 emphasized that they received education at home with alternative channels by stating, ‘We bring a private freelance teacher to our home 2 days a week and we provide private lessons (tutoring) [to the child]’. Similarly, P08 expressed her interest in the teachers coming to their home despite the pandemic: ‘I think that at least the teachers should come to the homes since we cannot take [our children to schools]. Even once a week…’ P08 also expressed her opinion on the absence of support provided by the school: ‘Honestly, we didn’t receive support – neither from the school nor did we get support from the teacher’. P09 shared her opinion on how the support provided by the school did not meet her expectations and need for a well-qualified and systematic support system: ‘I think they should have worked more organized and planned, at least’. As for the communication tools used between the parents and teachers, and the frequency and depth of the conversations, P05 stated that ‘they send videos from WhatsApp’, while P09 stated, ‘We talked on the phone once or twice about matters other than my child’. P04 stressed the necessity of materials, which is one of the indispensable and core components of special education:

This toy or that educational material for these children is recommended to you. It would have been better if they said your child is skilled in this or you could guide your child to that because of his habit.

P04 expressed the CWD’s longing and yearning for their schools by stating, ‘He says, “Let’s go to school, Mom; let’s go to school, Mom, take me to school” when he is bored. So, the child actually wants school’. Finally, P01 suggested that distance education can be individualized and live during the quarantine: ‘Maybe online live one-on-one education with a teacher might be successful’.

Children with disabilities

In this theme, parents stated how their children spent time at home, and inadequate socialization of and lack of value given to their CWD. Regarding the matter of how CWD spent time at home during the quarantine, P01 commented on their happiness about staying at home: ‘He is happy to be at home right now; I guess I am happy, too, as I said. Because I was constantly waiting at school all day after him, I was with him always during lesson breaks’. Similarly, P08 commented on incorporating the complexity of time at home by merging socialization, increased time spent on social media, and the hardship of doing educational activities while spending time at home:

Come on, girl, let's do a little lesson, let's do something a little bit. She doesn't accept it. She always wants to play with the phone. For example, I do not know how to use Instagram, I do not know much about those things; in her hand, she uploads pictures, does something…

P09 expressed how her CWD felt about her friends and school as an essential socialization context during the quarantine days: ‘[She] started to repeat her friends’ names at school from time to time, with teachers, she was sometimes telling me about the times she got angry, so she missed [school] as far as I understand’. Some participants shared that overall public health was more important than their CWD during the quarantine process. Thus, elevated levels of interest on this issue should be considered in the greater context; however, receiving no particular attention or interest for families with CWD during quarantine might undermine their dignity and self-worth. Regarding this matter, P04 stated, ‘I don't think it's even being thought of in today's environment’. Additionally, P10 stated, ‘No, teacher [interviewee was referring to the interviewer], what kind of help can I expect from the state, in this quarantine process? Everyone has fallen into their own problems’.

Discussion

Three main themes emerged from this study: (a) quarantine, (b) education, and (c) CWD. The first theme, Quarantine, revealed that families were concerned about quarantine and post quarantine processes. Parents stated they had hardships in process management and that their daily lives were affected negatively by the uncertainty of the pandemic and post pandemic process. Studies in the literature (Aishworiya and Kang 2021, Asbury et al. 2021, den Houting 2020, Eshraghi et al. 2020, Manning et al. 2021, Meral 2021) support this study’s findings. Families are concerned about the process, education (Cahapay 2020). One of the primary stress sources for parents was the interruption of schools and the disruption of the education and learning process during the pandemic.

Studies have highlighted families’ experience of declining support networks in various life areas, including social (Asbury et al. 2021), economic, and educational contexts (Manning et al. 2021). Similarly, the current study’s participants stated that no help was provided during the quarantine process and they articulated their needs for psychological support. Parents stated that while both they and their CWD were psychologically affected by these situations, they received no support. Participants also noted how the unpredictability of the process caused additional hardship to them while explaining the pandemic situation to their CWD. The research suggests the level of comprehension of CWD is essential in the explanation of the process (Asbury et al. 2021). Families play a significant role in clearly and accurately explaining this process to their CWD. Relevant studies (Bent et al. 2020, Chandra and Aruna 2021) advise the usage of social stories to explain the situation and carry out activities and things to do in this process. Other studies focus on skill teaching on mask usage for CWD (Sivaraman et al. 2021, Yılmaz and Atlı 2020).

Using research-based practices as a base for teaching activities executed by families is integral for the healthy management of the process. However, the pandemic brought up problems in family education, such as deficiencies of the process and stakeholders’ inadequate attention to the issues. Families reported their inadequacy and insufficiency in terms of home education for their CWD. A further step is to understand the importance of family education and make systematic family education a necessity with training support (Narzisi 2020, Stenhoff et al. 2020). Consideration of the international literature shows that studies were conducted with families during the pandemic process and suggestions for models were made (degli Espinosa et al. 2020). Another recommendation includes implementing ‘telehealth’ applications with families during the COVID-19 outbreak (Jeste et al. 2020, Wagner et al. 2021, Wijesooriya et al. 2020). Using applications such as ‘telehealth’ and ‘remote coaching’ might provide highly effective and efficient results during the pandemic.

In the second theme, education, parents stated that their children did not receive support from schools and that the distance education offered was not suitable for CWD (Bent et al. 2020). Petretto et al. (2020) described the hardship of distance education for IWD as (a) inability to have the necessary infrastructure for distance education; (b) families’ great responsibility to monitor the education process and use the technical infrastructure; (c) need for expert support (Yarımkaya and Töman 2021); (d) problems with material accessibility; and (e) difficulty planning and conducting lessons while considering the diversity of neuropsychological, cognitive, and affective processes across students. Studies on distance education show that teachers noted several considerations about ineffective distance education, including (a) insufficiency of families to support distance education, (b) absence of educational programs for diverse abilities and various disabilities, and (c) their adaptation to distance education, and the inadequacies experienced in finding relevant materials (Ayda et al. 2020, Buchnat and Wojciechowska 2020, Senol and Yaşar 2020). On the other hand, families argued that individualized live education should be provided to children by their own teachers for effective distance education. Additionally, families reported the unwillingness and disinterestedness of teachers to effectively communicate with CWD during the quarantine.

In the third theme, CWD, parents stated that COVID-19 might have adverse effects on both their own and their CWD’s mental health. The precautions and measures applied following the COVID-19 outbreak, such as (a) the interruption of schooling, (b) the increase in time spent only at home due to the implementation of curfew on certain days, and (c) the overall disruption of daily routines, might have adverse effects on the mental health of IWD (Aishworiya and Kang 2021) and can cause anxiety and nervousness (Courtenay and Perera 2020, Eshraghi et al. 2020, Guller et al. 2021, Hassiotis et al. 2020, Lim et al. 2020, Mutluer et al. 2020). Furthermore, parents of individuals with autism reported the hardships experienced in training on structuring and planning leisure time and daily routine activities (Colizzi et al. 2020). Also, individuals with autism generally had higher anxiety levels and decreased psychological well-being than their peers without disabilities during the pandemic (Ersoy et al. 2020, Mutluer et al. 2020, Nisticò 2020). Lastly, CWD increased time spent with on-screen engagement, while they decreased time spent with physical activity during the pandemic (Garcia et al. 2021). Yarımkaya et al. (2021) provided examples of physical activity programs over WhatsApp, which might be an alternate solution.

COVID-19 has had detrimental global effects for everyone, including IWD. Thus, the services provided during this process should be inclusive of IWD and their families (Armitage and Nellums 2020). The conscious selection of inclusive plans would forestall the possible inequalities and narrow the gap between individuals, preventing it from being widened further.

Limitations

This study was conducted with 10 families who had CWD. Thus, the generalization of the findings might be a significant limitation considering the limited number of participants. In addition, interviews with the families were held over the phone. Although phone interviews were a preferred option during the pandemic to provide the utmost protection and safety to participants, this process brought a new set of problems such as time constraints during the long call durations and determination of appropriate interview times. Finally, the data collection process involved only semi-structured interviews.

Conclusion and recommendations

This study’s findings show that families’ anxiety levels were high during the pandemic, there were limitations in distance education, and adequate support was not provided in the process. Findings reveal the support needs of families and the necessity of making service plans in line with these needs. Without this basis, prepared programs, support, and plans will remain superficial and unbeneficial. The pandemic has once again revealed the importance of families in the education process. Considering the experiences of these families and the relevant literature, following are recommendations for implementation in diverse contexts and environments and further research.

Suggestions for implementation

Considering the general framework of populations, the creation of comprehensive and inclusive risk plans and interventions applicable to global, national, and local levels should be organized by countries, international organizations, and other state parties and should be ready for immediate use in case of natural disasters and pandemics. Another suggestion for implementation includes taking the necessary precautions and transferring them into relevant contexts to prevent the inequality that might occur caused by various socioeconomic statuses and protect individuals’ equal access to educational opportunities. Additionally, preparing and providing in-service training to teachers within a ‘Universal Design for Learning’ framework might increase teachers’ effectiveness in providing distance education. Finally, approaching distance learning as an intervention mega-frame using technology to develop individualized and rich learning opportunities might help decrease problems related to content accessibility and relevance.

Suggestions for implementation solely on families include: (a) providing psychological support to families and using applications like ‘telehealth’ for better process management; (b) planning and establishing frameworks for systematic and need-oriented family education and training with mandatory participation for families, for whom the importance of family education was illuminated with the pandemic process; (c) developing for and delivering resources (i.e. books, e-books, videos, and online programs) to families for guidance through the pandemic process; (d) using applications and systems such as ‘telehealth’ and ‘remote coaching’ for family education and training; (e) delivering culturally adapted versions of family education programs sampled and examined from the relevant literature; and (f) establishing online sharing and support groups to provide social support to families.

Recommendations for further research

Recommendations for further research include (a) determination of the ‘new normal’ from the perspectives of parents and families globally, which might be used as a component in the revised version of educational activities for IWD; (b) researching appropriate ways to provide parent and family education and training during the quarantine process, and (c) input from IWD should be collected to determine their ‘new normal’ for general well-being and educational purposes.

Disclosure statement

No potential conflict of interest was reported by the authors.