Table 1.
Themes, categories, and examples of descriptions
| Examples of descriptions | Category | Theme |
|---|---|---|
| “I spent a month in a school classroom and two months in the gym, where everyone could see us at any time (in the evacuation shelter). That caused [us] substantial stress.” “My child groans while sleeping at night. But everyone lied so close to each other so someone murmured that was annoying (in shelter).” | Others’ gaze and irritation | Perceiving pressures and unfairness |
| “My house was damaged and in a complete mess. But we didn’t go to the shelter because it was obvious that others would be bothered by my child.” | Fear of trouble in shelter | |
| “I nearly lost my life, and my car was taken by the tsunami, but because my house remained safe, we were not considered disaster victims. There were no stores and food, but we were not provided with relief supplies.” “We stayed in our house because we couldn’t stay in the site but the other evacuees said it was unfair to claim the supply staying at our house.” | Not regarded as disaster victims | |
| “It was easy to obtain help for the elderly and individuals/children with physical disabilities but not for children with invisible disabilities.” “Workers of the government prioritized the supply of gasoline to people with physical disabilities or dialysis patients but they didn’t to those with epilepsy.” | Unfair treatment of invisible disabilities | |
| “We had to prepare meals that took two hours to cook in the morning, one hour for doing the dishes. I didn’t have time to rest before starting the dinner preparations at around 2 p.m. I was exhausted all day when it was my turn…I knew it was for ourselves, but we had to cook for 100–200 people.” “When emergency food assistance was provided to the community, women had to prepare uncooked food, its very time consuming, and too tired.” “When the earthquake occurred, I was pregnant, and searched for foods and drinks for my family, including my elder child with disabilities, all day long. My baby bump was growing, but my husband did not do anything and watched TV.” | Women’s expected roles | |
| “The local government knew my child requires special aids, but it didn’t help at all.” “I realized the risk of being forgotten in the area.” | Being forgotten | Failing to obtain support and deeper understanding |
| “I heard officials of the local government didn’t understand not taking the medicine is lethal to people with epilepsy.” “When the earthquake hit us, I was taking care of my bedridden elder son, and my autistic younger son couldn’t stay still. My husband came home right after the earthquake to confirm our safety, but we lost touch with him after he went back to his office. Then, at around 9 p.m., the waves rushed into our house and my elder son died there. Until then, he was breathing…He was breathing…He was breathing…. But there was water up to his waist. My younger son and I could do nothing but watch him gradually die in front of us…Next morning, I escaped from our house with my younger son on my back, wading through chest-deep water, and left my elder son’s body. Everybody around me has avoided this topic as a taboo, and treated me with great caution. But, I’ve always wanted to talk about my elder son…I’m at my limit.” | Lack of deeper understanding | |
| “You may not know but many of those children are selective eaters. Many children eat nothing but meat.” “I struggled to get juice for a person with developmental disability, who can’t drink water but sweet juice. I didn’t have any stock at home so had to search for it. I realized such preferences might threaten my child’s life.” | Child’s selective eating | Realizing child’s characteristics that are difficult for others to understand |
| “My child ate or drank up everything even though I told him the amount he could eat at one time because he didn’t understand that.” “My son (autism spectrum disorder) released the water in the bathtub, which I managed to gain by having queued for water many times. He couldn’t stand bathtub filled with water.” “When supply foods were provided to disaster victims, we had to stand in line for a long time… It was difficult for me to manage my son’s behavior and had to give up on obtaining supplies.” “After the earthquake, my child’s problematic behaviors worsened…but I didn’t know how to treat my child…I was worried about my child, but had no idea.” | Child’s uncontrollable behaviors | |
| “Two or three days after the earthquake, water was supplied to the elderly but it was just a sip per person, only one centimeter of a plastic bottle. So I was feeling ashamed when asked them to give that water to my son with disability. I said I don’t need it for myself but my son.” “I insisted the necessity of medicine for the child with disability to the local government official.” | Asking for help | Tackling challenges on their own in different ways |
| “It’s difficult to say, please give us special treatment.” “I couldn’t get special treatment because of child with a disability.” “In the evacuation site where we stayed, there was a room for people with disabilities or those who were sick, which had a heater. But my child with developmental disability was not physically disabled and did not look he has a disability, he could walk. So we didn’t go to that room.” | Not asking for help | |
| “We are trying to help ourselves out on our own because the local government can’t.” “I was so amazing because the PCs of local government were washed away by waves. The information about my son on their PC disappeared…we shouldn’t rely on the local government too much.” | Not rely too much on official support | |
| “(After the earthquake) I kept requesting the school for children with disabilities to offer the place for an evacuation site. So when I was the leader of PTA, I conducted disaster drills with communities and schools.” “We (members of parents’ associations) requested the local government to improve our situations, and some of our ideas related to disaster preparedness were reflected in local government policy.” | Working with others | |
| “I wrote up child’s information including medicine and allergy on a paper and kept it in the bottle that I put in refrigerator. It may be useful for someone who helps my child.” “My child and I have whistles to ask for help, everywhere.” “Even today, I have retained the habit of keeping water in the bathtub.” | Preparing for future disasters |
PTA parent–teacher association