Volume 23, Issue 4 (Winter 2023)                   jrehab 2023, 23(4): 560-583 | Back to browse issues page


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Bonyani M, Ostadhashemi L, Alipour Gravandi M, Alipour Gravandi F. Exploring the Challenges of Families With Mentally Retarded Children in Care Centers Under the Supervision of the Welfare Organization of Tehran in the COVID-19 Pandemic Conditions: A Qualitative Study. jrehab 2023; 23 (4) :560-583
URL: http://rehabilitationj.uswr.ac.ir/article-1-3112-en.html
1- Department of Social Work, Faculty of Social Health, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran.
2- Department of Social Work, Faculty of Social Health, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran. , lostadhashemi2@gmail.com
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Introduction
The spread of the COVID-19 disease has caused concern in all countries and incurred huge human and financial losses [1, 2]. By April 21, 2022, the total number of people infected with COVID-19 in the world reached more than 507 million, and the death toll was more than 6 million. By the above date, the number of infected people exceeded 7 million, and the death toll exceeded 140 thousand people in Iran [3]. 
For various reasons, including the high risk of infection, COVID-19 has a greater impact on vulnerable groups, including mentally-retarded children [7-10], who are more likely to experience social harm, health problems, and psychiatric disorders [11]. As of March 24, 2020, about 1100 people with mental and physical disabilities had been infected with COVID-19 in nursing homes in New York, of whom 105 people died [13]. In Iran, as of July 21, 2019, 131 people with disabilities died due to COVID-19 [14].
The results of studies show that families with mentally-retarded children experience many problems [15-19]. Issues such as heavy economic expenses, children’s mental and behavioral disorders, inability to do personal things, communication problems, history of harming themselves and others, the conflict between mother and other family members to take care of a disabled person at home, job loss, or taking leave to take care of the child are among these challenges [20]. These challenges usually make families face situations that lead to children being sent to care centers, which also brings other problems for the disabled person and his family [22]. Due to the inability to observe personal hygiene, the weakness of the body’s defense mechanisms, and a long stay in daycare institutions, these people are more at risk of contracting diseases and infections [18]. Restrictions on education and health facilities increase their vulnerability to crises [23]. During the COVID-19 crisis, because of the social limits caused by the coronavirus, including the quarantine of care centers, social distancing, and the prohibition of public gatherings, it is difficult to provide services to these clients and their families. So, children with mental disabilities and their caregivers and parents experience more challenges during this period [24, 25].
Asbury et al. reported that COVID-19 could affect families of children with special needs and cause parents and children to worry, and change their moods and behavior [26]. Jalali et al. pointed out that the challenges of people with mental disabilities and their families and the worry of contracting COVID-19 are more than healthy people because mentally disabled children cannot protect themselves [28].
According to what was said, the COVID-19 crisis, its limitations, and challenges have aggravated the problems of families with mentally-retarded children and increased the need for these families to receive educational, psychological, social, and financial services [26, 30, 31]. Therefore, it is necessary to address the challenges and experiences of this group during the COVID-19 pandemic.

Materials and Methods
Study participants 
The study participants comprised families with intellectually disabled children under the supervision of the Tehran state welfare organization of Iran (SWO) who were living in daycare centers (Asman Children, Vahdat, Imam Ali, and Tehran). To access the samples, a purposive sampling method was used with maximum diversity in terms of gender, proportion, and other demographic characteristics and rich experience related to the studied phenomenon. The inclusion criteria were being the family (father, mother, sister, and brother of the mentally-retarded child), having a mentally-retarded child over 14 years old with mild to severe disabilities under the supervision of the SWO, passing at least 2 years since being kept in the care center, being interested in participating in the study, and signing the informed consent form. The participant can understand and express his experiences. Also, the participant was excluded from the study if he or she did not want to continue cooperation and missed any inclusion criteria (such as discharge from the care centers).
Data collection
A semi-structured interview method was used to collect data, and due to the spread of COVID-19, data were collected both face-to-face or over the phone between July and October 2021. The interviews started with general questions tailored to the groups and guided by exploratory questions based on the conditions of the participants. Interviews were conducted by the first author and recorded with the participant’s consent. The duration of the interviews was between 30 and 45 minutes. The participants were assured that the information would be kept confidential by obtaining written consent in face-to-face interviews and oral consent in telephone interviews. This study was approved by the Ethics Committee of the University of Welfare and Rehabilitation Sciences (Code: IR.USWR.REC.1400.115).
Graneheim and Lindeman’s approach was used for data analysis. First, the text of the interviews was read several times, and semantic units were identified, coded, and summarized. Then, based on the similarities and differences, the codes with the similar topic were placed in a class. The subclasses and classes were categorized, and central codes were formed. In the next step, the summary classes and the central concept of each class were determined, and the main and abstract concepts were extracted.
The data’s accuracy and robustness were also based on the four criteria of credibility, transferability, dependability, and confirmability of Graneheim and Lincoln [34]. To check the credibility, and long-term conflicts with the data, collecting data from different sources and reviewing the study results were done with the participants. For transferability, the participants were selected with maximum diversity in terms of gender, relationship with a disabled child, job, and family dimension. To ensure dependability, samples of the conducted interviews and coding were provided to the research team to analyze and review. To comply with the confirmability, the research path was recorded so that other researchers could follow this work if they wished to continue the research in this field.

Results
Among the 18 participants, 4 were men, and 14 were women. According to the data, 50% of the participants were homemakers, and the other 50% were employed. Among the participants, 16.6% reported their economic status as good, 55.5% as average, and 27.7% as poor. According to the report of the participants in this research, the severity of intellectual disability of 55.5% of disabled people was moderate, 22.2% was mild, and 22.2% was severe. The average duration of keeping people with intellectual disabilities in these centers was 8.5 years. After the analysis of the interviews, 406 primary codes were obtained, categorized into 6 main categories and 24 subcategories, presented separately for each one below.
Constant worry about their child being infected with coronavirus
The first class resulting from the analysis of the interviews was the constant worry of the child being infected with the coronavirus, which indicates that the child is at risk in the care center. This category includes five subcategories, which are the inability of the child to protect himself from the virus, non-observance of protocols by staff, underlying diseases and immune system deficiencies, imposing restrictions on the ways to prevent pregnancy for people under the age of 18, and conflicting information about the incidence of children and young people. For example, under the subcategory “inability to protect oneself from the virus,” participant number 12 said:
“My child doesn’t understand what coronavirus is and what he should do. If we explain to him, he doesn’t understand that he has to protect himself. He doesn’t properly understand wearing a mask and removes it from his face.”
Cutting off communication and intensifying psychological pressures
With the onset of coronavirus and the social restrictions imposed by the coronavirus headquarters and the government for the general public and special groups, it was forbidden for parents and families to meet with the elderly living in care centers, which reduced and even cut off the communication between the elderly and family members. The consequences were many problems, including the aggravation of psychological consequences for the disabled and their parents. This category includes 5 subcategories: restlessness and irritability of the needy, worry about the uncertain future, psychological distress of parents, fear of losing a child, and increased guilt. For example, in the subcategory “fear of losing a child,” participant number 15 said:
“Since the day that coronavirus came, I have been thinking day and night that my child does not get infected and I do not lose him. My nightmare day and night are that my child does not get coronavirus.”
Dealing with family tensions and conflicts
Among other problems faced by families with intellectually disabled children during the COVID-19 pandemic is the conflict with family tensions, which are related to the family’s relationship with the outside world and the problems that occur within the members’ family. From the four subcategories of this, we can mention “neglect of other children,” “spousal blame,” “tension in family interactions,” and “intensification of family homesickness.” For example, regarding the subcategory “intensification of family homesickness,” participant number 18 said:
  “Well, of course, you can see that we all miss him and complain about why we don’t see him. My mother drinks a glass of water and says, “Where is my son?” It has disturbed the atmosphere of the family. Missing itself is a big process, and it hurts... it’s very hard.”
Unsupportive community
Another category obtained from the data analysis is unsupportive society, which consists of four subcategories: “double social stigma”, “social exclusion”, “lack of support for vulnerable groups”, and “social distancing restrictions.” For example, regarding the subcategory of “lack of support for vulnerable groups”, participant number 4 said:
“Before, some money was given to children who needed rehabilitation, but now either they don’t give it, or the amount is too small and doesn’t cover the costs. Even during the coronavirus, when there was so much economic pressure, no more help was given.”
Family economic crisis
The other category extracted from the data analysis refers to the critical conditions of the economic situation of families during the coronavirus pandemic. Some of these material problems have already existed, but some have become prominent or intensified following the spread of coronavirus. Therefore, the participating families in the current research have also pointed out their difficult livelihood during this crisis. This category includes three subcategories: childcare expenses in the center, unemployment and reduction of income of the head of the family, and poverty and worsening of chaotic economic conditions. For example, regarding the subcategory of “costs of child care in the center,” participant number 16 said:
“Coronavirus caused a terrible economic situation because of the restrictions on my business, and I became unemployed, now the expenses that I had to pay for the health resort are all left, and the situation is going in a bad economic way again. From the center itself, they keep calling me for maintenance fees, and I owe them, and I don’t have money to pay.”
6. Caring and educational concerns
The last category extracted from the data is related to care and education concerns, which consist of three subcategories: reducing the quality of care for the disabled, suspending rehabilitation and educational activities, and limiting the leisure activities of the disabled. For example, regarding the subcategory of “decreasing the quality of care for the disabled,” participant number 1 said:
“Before we used to bring him home, his toes were fungus-like because they use detergents there, and we used to check his toes. For example, is there no wound there? Or is he not sick?”

Discussion
This study aimed to identify the challenges of families with intellectually disabled children in care centers under the supervision of the Tehran State Welfare Organization during the COVID-19 pandemic using a qualitative method.
One of the main categories extracted from the study is the constant worry of the child being infected with the coronavirus. Mentally-disabled children cannot understand the disease or learn the methods of prevention. Also, the lack of suitable facilities for safety in the care center reduces the possibility of self-protection in the disabled, which results are in line with the studies of Hasiotis et al. [36].
 Failure to follow the protocols by the staff was another reason for the increased concern of the families. Moradi and Barkat’s studies [27] indicate that due to the prolongation of the pandemic period and the fatigue caused by this process, a decrease in compliance with health guidelines is seen in people, especially employees.
Ignorance and the strange ways of transmitting the disease were other things that increased the stress and worry of the possible infection of the child with a coronavirus in families with mentally-retarded children. Hasiotis et al. also referred to the poor condition of care centers to halt the spread of the disease [36].
Vaccination is currently being done, but the lack of a suitable vaccine for children and the conflicting information about children’s infections worry parents about their mentally-retarded children. Rao et al. reported that limited access to appropriate information related to age is one of the challenges associated with the care of mentally retarded children during the outbreak of the coronavirus pandemic [28].
The other category was the disconnection of communication and the intensification of psychological pressure. Restlessness and irritability were the consequences of communication interruption for the disabled child, consistent with the results of Tromans et al. studies [29].
The mental distress of parents was the result of the disconnection of communication and the intensification of psychological pressures. Worries about the transmission of the virus, the embargo of leaving for the disabled, and the prohibition of face-to-face visits have disturbed the families, and the anxiety caused by not knowing about the condition of the disabled has caused nervous pressure to the parents and this can endanger their mental health. Rose et al. reported that during the COVID-19 pandemic, mental stress and distress are especially worrying for families and caregivers of disabled children because these families are likely to suffer more problems and issues [30].
 Based on the results of previous studies [31-34], during the COVID-19 pandemic, the level of depression and anxiety increased, which weakens the body’s immune system. In the study of Asbury et al., parents also reported the experience of worry and change in their mood as a result of quarantine and its problems for their mentally retarded child [22].
 The parents in Rogers et al.’s study stated that after the outbreak of COVID-19, they had more care responsibilities and worries about the future [6]. This uncertain future increases other families’ fear, anxiety, and challenges.
The intensification of guilt due to being away from the child and the constant mental conflict related to the child’s feeling of rejection increases the torment of conscience among the parents of these children. This feeling of guilt, which has not been mentioned in previous research, grows with the child’s unwillingness to stay at the center and excuses to return home and endangers their mental health.
Dealing with family tensions and conflicts was one of the main categories that affected the relationships of the family with a mentally-retarded child with the surrounding people and challenged the relationships within the family. The consequences of coronavirus have created changes in the social system, and these changes themselves have consequences [34, 35].
Challenges within the parents’ family were among the other issues of families with mentally-retarded children. The parents’ verbal and emotional arguments, blaming each other for the current situation, and being away from their children were among these challenges. Asbury et al. found that having a child with a physical disability affects the quality of family relationships and sometimes challenges patient and empathetic parents [22].
In addition, healthy children’s arguments with their parents have been intensified during this period. These tensions are formed due to the special attention of parents with a needy child far from the family. Hasiotis et al. reported the challenge of creating and perpetuating problems between family members with intellectually disabled children during the outbreak of COVID-19 [36].
Parents are being judged by society, stigma, and, as a result, social isolation was among the consequences of the existence of an unsupportive community. Families with intellectually disabled children hand over their children to care centers for various reasons, and this issue has been judged more by the people around them with the spread of COVID-19. Hasiotis et al.'s study showed that people with developmental disabilities and their families are likely to face social adversities during pandemics [36].
The economic problem of the family was another main class. In their review in China, Qi et al. showed that the outbreak of COVID-19 and its consequences worsened the situation for people with disabilities who needed supplies and services [48].
Worrying about the quality of care for children is one of the other things that cause families to worry. Truman et al. showed that during the outbreak of COVID-19, the quality of care for people with disabilities decreased, and the pressure on the caregiver may lead to over-prescription of medicine and harm to the disabled. Also, their results included that the physical activity of disabled people is endangered during this period, and observing social distance and staying away from others leads to their inactivity [29].

Conclusion
The results of the current study can be used to design supportive programs and policies for mentally-retarded children and their families. Although it seems that the supportive measures cannot solve all the concerns of these families, the results can be useful for designing specialized interventions for professional caregivers and social workers and, to some extent, solve the problems of these families and their children.

Ethical Considerations

Compliance with ethical guidelines

This study was approved by the Ethics Committee of the University of Welfare and Rehabilitation Sciences (Code: IR.USWR.REC.1400.115). Participants agreed to publish data without mentioning their names and personal information. They also became aware of the research results.

Funding
The authors received no financial support for the research, authorship, and publication of this article.

Authors' contributions
Conceptualization, data collection, methodology and analysis: Maryam Bonyani, Leila Ostadhashemi and Fardin Alipour Gravandi; Writing the draft and final approval: All authors.

Conflict of interest
The authors declared no conflict of interest.

 
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Type of Study: Original | Subject: Rehabilitation Management
Received: 20/02/2022 | Accepted: 29/06/2022 | Published: 1/01/2023

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