Cross Cultural Approach: Lived Experiences of Children with Special Needs during Pandemic in their Family’s Perspectives
Donna Lea P. Buendia1*
1 University of Perpetual Help System DALTA, Las Piñas City, Philippines
Corresponding Author: [email protected]
Accepted: 15 September 2021 | Published: 1 October 2021
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Abstract: The COVID-19 inexorably created too much havoc in our society and the educational system was not speared from the problem created by pandemic. Consequently, the child with special needs face more challenges in learning as compared to most children their age. This study looked into the cross-cultural comparison of the lived experiences of children with special needs in Philippines and India during the pandemic through the perspectives of their family members. The participants of the study were consisted of eight (8) family members of children with special needs, four (4) Filipino participants and an equal number of four (4) Indian participants. This study used a phenomenological, qualitative research to identify and understand the concepts of the research relying to its purpose. The data were gathered through a semi-structured interview and the interpretation of data collected were presented through a pure descriptive analysis. From the collection of data, the following themes were generated:
(a) Parents: The New Teachers and Therapists, (b) Anti-COVID Rituals, Beliefs and Practices, (c) The Efforts and Struggles during Virtual and Modular Classes, (d) Consequences in Financial Resources and Accessibility, (e) Negative Behavioural Implications brought by the Pandemic, (f) Family Quality Time Appreciation, (g) Source of Strength during Trying Times, and (h) “3 R’s: Relaxation, Recreation and Rejuvenation as Coping Mechanisms”. These themes are the features of participants' accounts characterising particular perceptions and their lived experiences during this pandemic.
Keywords: lived experiences, pandemic, children with special needs
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1. Introduction
The COVID-19 inevitably caused too much damage in our society. It has affected people apart from their nationality, educational background, gender, and financial income. The consequences have not been the same for everyone; it hit the most vulnerable hardest. Education is no exception; it has forced schools and colleges across the nation to provide essential steps and action to provide necessary steps to look after the students’ safety and health.
Conspicuously, educational system was not speared from the problem created by pandemic.
Educators globally were caught flatfooted as to how to end and start the school year 2020.
Under federal law, every child, regardless of need, is entitled to an education which is appropriate and free of charge. To date, the U.S Department of Education has declined to make any changes to The Individuals with Disabilities Education Act (IDEA) due to the pandemic or the closure resulting it (Oklahoma, 2020). Nevertheless, a particular section addresses the
In accordance to the Section 504 of IDEA, Title II of the Americans with Disability Act, the local education agencies must identify if each child dismissed could have at least virtual education, instructional phone calls or conversation and other activities that are curriculum- based. This is applicable in cases or instances of a public school for children with disabilities are closed due to high risk of severe illness and death. The health guidelines must be followed religiously by the school administrators to identify the transmission risk during the provision of these academic or educational services. (U.S. Department of Education, 2020).
Equally implemented plan of the educational sector of the Philippines regarding the education of children with special needs during pandemic is the Department of Education’s Basic Education Learning Continuity Plan. It counteracts the risks and difficulties brought by COVID 19 in the basic education arena. It states that there must be a continuous education despite the transitions faced nowadays and even in the future. Specifically, the section of Monitoring and Evaluation Framework of the plan includes instructional platforms for inclusive education programs. According to DepEd, inclusive education programs must be based from IPEd, Madrasah Education Program, Special Education Program / Learner with Special Education Needs, and special interest programs. The Curriculum and Instruction Bureaus of DepEd implement appropriate learning delivery modes for inclusive education programs established (Briones, 2020).
Consequently, the child with special needs face more challenges in learning as compared to most children their age. They will need greater assistance from others with school activities, behavior as well as communication. With the presence of the pandemic, it seems these children lost people to depend on academically. Now, they can only rely on their family members.
According to Thwala (2015), a child with disability is one of the most challenging responsibilities for parents. While family members encounter personal problems at work due to stressors caused by the COVID-19, it is another dilemma to cope with the children’s disability.
The researcher chose to conduct the study among Filipino and Indian families to make an academic contribution in the field of special education for both countries as it emphasizes the essential gaps between the two cultures. As the researcher run through the recent situation of special education during the pandemic in India, it was found out that most educators are still struggling to adapt to the e-teaching technique and students seeking niche and personalised teaching, especially those with disabilities, are struggling the most in this country (Iyer, 2020).
This is not new in comparison to the circumstances faced in Philippines. In line with this, a cross-cultural approach for the two countries would be essential for the comparison and provision of family-centered services for the said population as well as emphasizing several socio cultural issues impacting the quality of life of the family of children with special needs.
2. Literature Review
In this paper, the researcher reviewed the literature related to the present research. This review is divided into four topics. The first one explained the cross-cultural issues on children with special needs. Second, it touched the challenges of parents and family members of children with special needs. The third one covered the coping mechanisms of the family members of these children and lastly, the researcher analyzed the respondents’ family empowerment across culture.
The current study explores the cross-cultural issues related to children with special needs in their family’s perspectives. Based on the related literatures for the cross-cultural issues, inclusive education is the main concern across culture when children with special needs are being discussed. The approach of different country on allowing children with special needs in joining the mainstream school were different although they are similar in the end goal of helping these children is part of the regular classes. In Croatia and United Sates, they have identified the inclusion of these children into partial and full inclusion depending on the severity of the abnormality or disability and the capacity of the children. They have also following the international trends on providing support and services to this children. In a sense, it can be said that inclusive education in their country is somehow established and working (Ralic, 2018).
The educational system in other countries such as United States may have a strike of difference compared to other countries. There were existing difficulties for children with disabilities which might have affected their education. These difficulties include reading, writing or difficulty to comprehend. Special education which is consisted of instruction and individualized help must be provided to them to support the learning of the child with special needs. Students with special needs are protected by federal laws that give them assurance of receiving free and appropriate public education (Colorado, 2021). It is the obligation of public schools to give students the special help they needed.
On the other hand, India and Philippines seems to be stuck on identifying the children with special needs in their countries. It was also noted that both India and the Philippines lack data of the numbers of these vulnerable populations. There was no information as to the number of children in the country that needs to be supported and the worst is that most of them were labelled differently (Bakshi, 2017). Similarly, the Philippines also struggle on the lack of data about these groups as no sufficient information on the prevalence of children with special needs in the Philippines. The issues and concerns that arise from both countries’ special education situation strengthen the purpose of the current study especially during this pandemic. Unlike India, the Philippines attributed the poor support of the government on these groups to the poverty and poor governance rather than lack of knowledge of the teachers (UNICEF Philippines, 2018).
Parents as the usual and main caregiver for children with disabilities were also highlighted in the literature. Most of them encounter challenges at work, at home, school and in the community. Some of the encountered dilemmas are more on emotional stress, failure to cope with the children’s disability and financial challenges. When it comes to the delivery of education for children with special needs, it was aforementioned that educators’ victory in communicating with parents and guardians depends on setting up common understanding, regard, and affectability to the social setting of children with incapacities. And another notable remark is the parental convictions and understanding of their children’s inabilities tied to their cultural-specific viewpoints on inabilities. These core findings were substantially interconnected to the current study as parents were the channel to express the lived experiences of rearing children with special needs. The challenges encountered were relatable and comparable as to the circumstances encountered during the Covid 19 pandemic of these parents (Abadeh, 2015).
Raising a child with special needs or disabilities is a great challenge to most parents. The study of Thwala (2015) explored the lived experiences of parents of children with disabilities in
disability. This might include the challenges experienced at their house, school campus and other places possible. This also might cause hindrance for them to work collaboratively with educators for the education of their children. A phenomenological design was utilized for this research. The parents from rural setting (Maphalaleni area) participated in the research. They are parents of children who attended 20 schools in primary level of the same location. The data gathering procedure included the use of semi structured interview guides. It was analyzed through thematic analysis. Based form the results, the parents encounter challenges at their workplace, at home, school and in other places possible. Some of the challenges are emotional stress and inability of coping with the children’s difficulty and special needs and also financial distress. The study emphasized that the uncertainty of the parents’ decision making in their children’s behalf. It also observed that there were no such training provided to for the coping mechanisms of parents with the disabilities of their children and the process of collaboration with the educators.
In a research from Jaiswal et al. (2018) about psychopathology and coping mechanism in parents of children with intellectual disability in India, it was mentioned that raising a child with mental incapacity (ID) can include to child rearing push altogether. This stretch can manifest into psychopathologies such as uneasiness and discouragement. The points of the consider were to survey psychopathology and adapting instruments in guardians of children with ID. The researchers’ objective in conducting this study was to promote way of better understanding of issues of parents of children with ID. The points considered were assessed psychopathology, adapting instrument, and components such as age, sex as well as relationship in guardians of child with ID.
In dealing with children with special needs, coping mechanisms are given to ease the stress level encountered by the family members most especially the parents. The main stress reported by the parents was the time their children diagnosed with mental disability and their understanding of that situation (Bonab (2017). The realization that a life-long source of burden gave them a major effort of making sense what was going on. Those parents who confronted the situation looked for ways on how to face such problems. While some of the parents used emotional focused coping strategies, may preferred focus coping strategies for struggling with external problems that caused the increased of the stress. The underlying phenomenon of the current study is pandemic, in normal day scenario coping mechanism is a given method for the family members to cope up, however; the Covid19 pandemic is an additional circumstance for the family with special needs to deal with. With the existing coping mechanisms utilized in the related studies, it will be good foundation to start with and appropriately apply the most suitable in rearing children with special needs during the time of pandemic.
Family empowerment is very important in taking care of children with incapacities as these factors contribute the physical and emotional well-being of the child. The related studies discussed the requirement for more noteworthy specificity in inquiry about plans to look at child and family characteristics counting socially based connections styles, sort and seriousness of children’ s disabilities, and family statistic information. It might include the level of acculturation, formal instruction, and socioeconomic status. Typically, the current study ought to utilize more representatives of members of the family to better reflect parent discernments almost in directions techniques applicable for their children with special needs in the trying times of Covid19 pandemic.
3. Methodology
Research Design
This study utilized a phenomenological, qualitative method design. This design aimed to describe, understand, and interpret the meanings of the participants’ experiences of human life.
It focused on questions like how is to experience a particular situation especially situation considers to be phenomenological or one of a kind (Rodriguez, 2018). This is the most suitable design for the proposed study since the pandemic brought about by COVID-19 is a very interesting and one of kind narration of experience for the children with special needs in terms of its influence on their behavior and educational needs. A cross cultural approach was also applied on this study as the researcher aimed to explore the differences and similarities of experience between Indian and Filipino families.
Participants
The population frames for this study were the family members of children with special needs.
Participants were chosen using a snowball sampling technique. The researcher asked for referral from the students at University of Perpetual Help System-DALTA, eight family members with children with special needs will be selected both from India and Philippines.
Research Instrument
The researcher used a self-made interview guideline in collecting data or information from the respondents of this study. This was validated by three professionals: psychometrician, psychologist and special education teacher to ensure the validity and reliability of the questions.
In addition, the interview guideline intended for Filipino participants was translated into Filipino language and validated by a Filipino subject educator. Same as with the case for Indian participants, the questions were translated into Hindi language and validated by an Indian teacher who teach and specialize in Hindi language.
The interview guideline was subdivided into three parts: preliminary, main and closing or wrap up. The preliminary part covers the demographic background of the participants and the questions about the parenting support given to child with special needs during the pandemic and socio-cultural beliefs of the family members in relation to rearing a child with special needs. The main part of the interview guideline includes the questions about the lived experiences encountered in educating children with disabilities during the pandemic, positive and negative effects of pandemic to family members in the terms of financial resources and accessibility and in dealing with the behavior of the child with special needs during a pandemic.
And the last part of the interview guideline which is the closing or wrap up questions includes the coping mechanisms of the children with special needs and their family members during pandemic. Follow-up questions related to the major inquiry were asked to the participants for verification purposes.
Data Gathering Procedure
The initial procedure to gather data is to give the informed consent to the qualified participants of the study which are chosen using the Snowball sampling technique. It states the confidentiality of the information and recorded audio or video of the interview for the data privacy and safety of the participants. Upon signing of informed consent, virtual interview was scheduled by the researcher to ask questions pertaining to the lived experiences of children with special needs as perceived by their family members. The interview was done into three parts with at least thirty minutes to one hour of duration. In the first part, the researcher tried
with special needs and other personal information. This was done to ensure that the participants will become comfortable with the presence of the researcher so participant may give valuable answers. The second part of the interview is when the researcher asked questions from the interview guide and this was done in a maximum of one hour, the participants should not feel obligated to answer all of the questions at once as they might have other personal things to do.
The third part is the continuation of the interview and the time when the researcher clarifies the answer of the participants.
Data were gathered through virtual interview utilizing the online media for video conferencing.
The online application used for the interview of Filipino participants is Facebook Messenger video call and the interview for Indian participants used WhatsApp multiplatform application for video calls.
The virtual interviews with the Indian participants were conducted with the presence of a translator of Hindi language to English language. The translator of the interview was a local citizen of India guided by an Indian Special Education teacher who can speak both Hindi and English language fluently.
After the conducted online interview, the researcher offered a monetary incentive for the participants. According to the Research Ethics and Management Online System (2021), incentives provided for participating in researches should be appropriate in type and amount and should be provided fairly to all participants. The economic circumstances of those in the pool of prospective participants should also be part of the researcher’s concern. With these considerations, the researcher provided 500 Pesos for each Filipino participant and 1,500 Indian Rupees for each Indian participants. This also serves as a financial help for the essential needs of children with disabilities participants during the pandemic.
Analysis of Data
The data gather in this research study were analyzed by using the principles of thematic analysis. This approach in qualitative research design of collecting data includes six steps. The first one is the familiarization with the data; the researcher read the transcription of the interview to be familiar with the responses of the participants to each of the questions. Second is the generation of tentative codes, this step is very important to understand the insights of the participants it a simple way. Coding is a form of heuristics to which the participants can have a grasp of what the participants wanted to tell in a simpler and more organize way. The third step is the elucidation of themes; here the researcher made a lucid or clear explanation of the participants’ experiences, the fourth step is the review of themes. Themes in qualitative research are features of participants’ interpretations characterizing experiences that the researcher sees as relevant to the research purposes or questions. Coding is important in identifying themes. The fifth step is the delineation of themes, here the researcher described or portrayed the experiences of the participants accurately. Lastly and the sixth step is the production of the written report to which the researcher must consider the audience. This report provided sufficient pieces of evidence of the theme using clear examples from the collected data. This should be concise, coherent, logical interesting and non-repetitive (Africa, 2016).
4. Conclusion
The lived experiences of children with special needs during this pandemic were transverse by their family members through their narratives during the virtual interview. This study shed light to the following purpose: parenting support provided for the children with special needs,
sociocultural beliefs of the family members in rearing these children, lived experiences in educating the children during pandemic, positive and negative effects of the pandemic in dealing with the behaviours of the children, and the coping mechanisms during this pandemic.
The researcher come up with these themes and subthemes after the transcription of recorded interview that support the outcome of the study of the lived experiences of children with special needs based from the perspectives of their family members. These themes were generated from the transcription of the virtual interview from four (4) Filipino families and four (4) Indian families.
Table 1: Generated Themes from the Participants’ Responses
A. “Parents (Family Members): The New Teachers and Therapists” describes the journey faced by parents and other family members as for taking the role of being the new teacher and therapist in order to provide the academic and other special needs of their children during the pandemic.
B. “Anti-COVID Rituals, Beliefs and Practices” pertains to the shared knowledge of both cultures on their practices and traditional beliefs on the prevention of COVID-19 virus.
C. “The Efforts and Struggles during Virtual and Modular Classes” explain the process of the delivery of education and instruction for children with special needs including the the efforts and challenges during the pandemic through virtual and modular classes based from the first hand experiences of family members while guiding the children with special needs.
D. “Consequences in Financial Resources and Accessibility” This is the closer look to the effects of financial strains and difficulty with the accessibility to essential services for children with special needs in the perspective of their family.
E. “Negative Behavioural Implications brought by the Pandemic” describes the negative behavioural changes among children with special needs during the pandemic.
F. “Family Quality Time Appreciation” It pertains to the shared experiences of the family of children with special needs on the positive effect of the pandemic with regard to extra and quality time expenditure spent with their families.
G. “Source of Strength during Trying Times” relates the harnessed foundation to keep moving on and stay motivated despite all the challenges faced during the pandemic.
H. “3 R’s: Relaxation, Recreation and Rejuvination as Coping Mechanisms” activities engagement used to divert the psychological burden brought by the pandemic.
Even before the pandemic of COVID-19 strikes, children with special needs were among the most vulnerable, facing increased risk from abuse and discrimination and lack of access to services in different parts of the world. Understanding these pre-existing susceptibilities can help foresee how the COVID-19 pandemic could aggravate the existing inequities and can shed light on where to concentrated efforts may be required.
Based from the result, there were eight (8) themes acquired from the participants’ narration that describe the lived experiences of children with special needs from their family’s perspective. The themes constructed were the following: “Parents (family members): The New Teachers and Therapists”, “Anti-COVID Rituals, Beliefs and Practices”, “The Efforts and Struggles during Virtual and Modular Classes”, “Consequences in Financial Resources and Accessibility”, “Negative Behavioural Implications brought by the Pandemic”, “Family Quality Time Appreciation” , “Source of Strength during Trying Times”, and “3 R’s:
Relaxation, Recreation and Rejuvination as Coping Mechanisms”.
The extracted themes describe the role of the parents and other family members as for taking the role of being the teacher and therapist in order to provide the academic and other special needs of their children despite the disturbances brought by the pandemic. Parental support was
manifested with the responses of the participants by exerting the effort and guidance to continue the provision for the needs of the children.
Moreover, the family members of children with special needs practice preventive measures for COVID-19 virus based from their socio-cultural and traditional beliefs. This is evident in the responses of the participants from India and Philippines. The Filipino participants believed in boosting the immune system as the best protection for COVID-19 virus by giving their children with vitamin supplements and strictly staying at home. On the other hand, Indian participants emphasized their belief in Ayurvedic remedies and herbal immunity boosters such as Kadha concoctions and steam inhalation with different herbs (Marahasthra, 2020). Both culture practice virus prevention methods as part of rearing children with special needs during the pandemic.
In the implementation of the new normal academic set-up, majority of the participants also explain the process of the delivery of education and instruction for children with special needs including the challenges and efforts during the pandemic through virtual and modular classes based from the first hand experiences of family members while guiding the children with special needs. Since there are no practical classes under the direct supervision of a teacher, the learning behaviour of the child could also be affected. The negative impact of the pandemic was also manifested in the current financial situation of the participants. Most of the Indian participants reported financial strains during the pandemic due to the closure of their business establishments. Hence, they find it difficult to provide the needs of their children. On the other hand, the Filipino participants experienced difficulty in the accessibility of services for their children with special needs. This includes their access for healthcare during the times of illnesses of their children with disability.
Furthermore, the findings show that the behaviour of children with special needs during the pandemic was also at stake for regression. Two of the participants from Philippines narrated the regressive behaviours of their children due to the fact that their special schooling and therapies have been stopped during the pandemic. The learned behaviours suddenly regressed and they lose the skills that they’ve worked hard to develop. On the other hand, majority of the children with disabilities in India have negative behavioural changes such as agitation, irritation and physical hostile behaviour as reported by the parents. The interference of social interaction due to the closure of childcare centres, schools, recreational facilities and playgrounds caused behavioral consequences particularly for children with special needs.
Amidst the challenges faced by the family members and the children with special needs, they found a positive effect of the pandemic to their family. Based from the findings, the parents and other family members appreciate the extended quality time spent with their children. It was also revealed that this opportunity was used to focus more on the needs of their children and spent productive and enjoyable moments with them.
Moreover, despite all the negativities brought by the pandemic, the findings reveal the different ways of coping to overcome the difficulties they have encountered. One of these is by faith reinforcement through the source of their strengths. Majority of the participants from India considered their family and children with special needs as the source of their inspiration and motivation. On the other hand, a Filipino participant emphasized positive religious coping mechanism during this time of uncertainty. People may find strength, hope and purpose through their connections to faith and religion
The last theme generated is related to the coping mechanisms of the participants. Participants from both cultures engaged to activities like relaxation, recreation and rejuvenation as coping mechanisms during the pandemic. These kinds of activities can boost the self efficacy and increase of self worth of the participants during the pandemic.
As the current pandemic continues to affect the lives of people especially the children with disabilities and their family members worldwide, it becomes essential for them to learn ways to adjust to the new normal. Based from the findings of the study, it is suggested that they must continue to adhere to preventive measures to stay safe during the pandemic but be aware of its potential negative impact on their overall well-being. Children with disabilities and their family members should actively use the appropriate coping strategies such as finding positive meaning in the situation, keeping worthwhile and enjoyable activities, reaching out to friends and family to survive through this pandemic without sacrificing well-being.
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