| Literature DB >> 32808424 |
C Neece1, L L McIntyre2, R Fenning3.
Abstract
BACKGROUND: The COVID-19 pandemic introduced challenges to families with young children with developmental delays. Beyond the widespread concerns surrounding illness, loss of employment and social isolation, caregivers are responsible for overseeing their children's educational and therapeutic programmes at home often without the much needed support of professionals.Entities:
Keywords: COVID-19; Hispanic/Latinx ethnicity; autism spectrum disorder; coronavirus; developmental delay
Mesh:
Year: 2020 PMID: 32808424 PMCID: PMC7461180 DOI: 10.1111/jir.12769
Source DB: PubMed Journal: J Intellect Disabil Res ISSN: 0964-2633
Participant demographics (N = 77)
| Demographic variable |
| M (SD) |
|---|---|---|
| Parent characteristics | ||
| Age | 37.75 (7.27) | |
| Gender (% mothers) | 55 (71.40) | |
| Ethnicity (Latinx) | 59 (76.60) | |
| Monolingual Spanish speaking | 45 (58.44) | |
| Marital status (married) | 53 (68.60) | |
| Parent education (without high school diploma) | 32 (41.60) | |
| Family income (<$50 000) | 43 (55.80) | |
| Receiving government financial assistance | 44 (57.14) | |
| Child characteristics | ||
| Age | 3.91 (0.81) | |
| Gender (male) | 58 (75.32) | |
| Diagnosis (ASD) | 48 (62.34) | |
ASD, autism spectrum disorder; SD, standard deviation.
Frequencies of parent challenges
| Type of challenge |
| % | Illustrative quote | Translation of quote if applicable |
|---|---|---|---|---|
| Primary challenge ( | ||||
| Difficulty being home | 43 | 55.8 | ‘Lo mas dificil ha sido para los ninos que no pueden salir, que se desesperan, y se aburren de lo mismo.’ | ‘The hardest thing has been for my children because they cannot go out, they are starting to go crazy, and are bored of doing the same things.’ |
| Finances | 9 | 11.7 | ‘Es que mi pareja le descansaron de trabajo. Ya a veces estamos pensando que hacer con la renta y el pago del carro. Son las más estresantes.’ | ‘It's that my partner was laid off from work. So now we are thinking about what to do with the rent and the car payment. Those are the most stressful.’ |
| Lack of services and unmet needs | 9 | 11.7 | ‘Definitely loss in access to services that includes social interaction for my children, especially my kid with special needs. That's kind of the big one.’ | |
| Health concerns | 8 | 10.4 | ‘Lo mas dificil ha sido saber que mis hijos mayores han tenido que seguir trabajando porque son trabajadores esenciales, y me preocupa saber que anden en la calle. Pido a Dios que me los cuide y que me los protege del virus.’ | ‘The most difficult thing has been knowing that my older children have had to continue working because they are essential workers, and I am worried knowing they are out on the street. I ask God to take care of them and protect them from the virus.’ |
| Child behaviour problems | 8 | 10.4 | ‘Esta semana [mi hija] tuvo más comportamientos porque ya no tiene su rutina y en ratos no quiere hacer nada.’ | ‘This week [my daughter] had more behaviours because she does not have her routine anymore and has moments where she does not want to do anything.’ |
| Secondary challenge ( | ||||
| Child behaviour problems | 6 | 31.6 | ||
| Lack of services and unmet needs | 4 | 21.1 | ||
| Difficulty being home | 4 | 21.1 | ||
| Finances | 4 | 21.1 | ||
| Health concerns | 1 | 5.3 | ||
Parent‐reported benefits and silver linings of the pandemic
| Benefits and silver linings variables |
| % | Illustrative quote | Translation of quote if applicable |
|---|---|---|---|---|
| More family time and improved family relationships | 32 | 49.2 | ‘Nos hemos integrados mas como familia. Antes, [hija] estaba en la escuela y yo estaba esperando en casa… Estamos valorando estar juntos.’ | ‘We have become more integrated as a family. Before, [daughter] was at school and I was waiting at home… We are valuing being together.’ |
| No benefits or silver linings | 9 | 13.8 | ‘Beneficios? No creo. Ha sido muy difícil durante este tiempo.’ | ‘Benefits? I do not think so. It has been very difficult during this time.’ |
| Child has made some developmental gains during quarantine | 7 | 10.8 | ‘[Hijo] no habla nada, no diga palabras… ultimamente he escuchado que el anda cantando como los ABC, los numeros, y estoy escuchando mas sonidos que él está tratando de hacer.’ | ‘[Son] does not speak at all, he does not say words… but lately I've heard him singing things like ABCs, numbers, and I'm hearing more sounds that he's trying to make.’ |
| Slower pace of life, able to try new things, more present/mindful | 6 | 9.2 | ‘Habian muchas terapias, por aca, por allá, recogieranlos, hacer la comida. Ahora tengo el tiempo para dejar lo que estoy haciendo para ponerme en el piso a jugar. No se podría hacer antes.’ | ‘There were many therapies, over here, over there, I had to pick them up, make food. Now I have the time to stop what I'm doing and get on the floor to play. That wasn't possible before.’ |
| Observe resilience in child and community at large | 6 | 9.2 | ‘Creo que esa, la resilencia de mi hijo. Si, afectó un poco el cambio pero esta feliz. Esta contento en casa. No me pide salir.’ | ‘I think it's that, the resilience of my son. Yes, he was affected by the change a little, but he is happy. He is happy at home. He does not ask me to leave.’ |
| Able to get government assistance to meet basic needs | 2 | 3.1 | ‘Me aprobaron el beneficio de la comida.’ | ‘My foodstamps were approved.’ |
| Continued to stay healthy and safe | 2 | 3.1 | ‘No nos hemos enfermado. Antes [hijo] estaba enfermo pero creo que ha ayudado esa de no poder salir a la calle.’ | ‘That we have not gotten sick. Before [son] was sick but I think it has helped him to not be able to go outside.’ |
| More patience | 1 | 1.5 | ‘He aprendido a tener mas paciencia con [hijo].’ | ‘I've learned to be more patient with [son].’ |
N = 65.
Parent‐reported coping skills used during pandemic
| Coping skills |
| % | Illustrative quote | Translation of quote if applicable |
|---|---|---|---|---|
| Implementing behavioural strategies, implementing routines and schedule | 17 | 25.8 | ‘Poner una rutina, como un calendario, para que mis otros hijos entiendan a que hora entran a clase porque tengo que estar pendiente a [hijo] para sus trabajos y terapias.’ | ‘Create a routine, like a calendar, so that my other children understand what time they have to log in for class because I have to be paying attention to [son] for his work and therapies.’ |
| Engaging in enjoyable activities, finding fun things to do | 13 | 19.7 | ‘Tratar de estar en el parque o la yarda lo mas que se pueda y dejar que [hijo] se sube, corre, etc.’ | ‘Trying to be in the park or yard as much as possible and allow [son] to climb things, run around, etc.’ |
| Meditation | 9 | 13.6 | ‘Estoy haciendo mucha meditacion para mantenerme tranquila. Trato de hacer todos los dias por lo menos 10 minutos, y una vez a la semana hago en grupo con un profesional enseñandonos.’ | ‘I am doing a lot of meditation to keep calm. I try to do at least 10 minutes every day, and once a week I do it in a group with a professional teaching us.’ |
| Exercise | 7 | 10.6 | ‘Estamos haciendo ejercicios.’ | ‘We have been exercising.’ |
| Reported having no specific coping strategies for the pandemic | 5 | 7.6 | ‘La verdad es que no tengo tiempo. En realidad no ha cambiado tanto porque sigo trabajando.’ | ‘The truth is I do not really have time. In reality, not much has changed because I'm still working.’ |
| Providing space and taking breaks | 5 | 7.6 | ‘I've asked to take a break and asked for help from my husband | |
| Trying to have patience | 4 | 6.1 | ‘Lo que he tratado de hacer es tratar de tener un poco mas de paciencia o sea tratar de entender que para ellos es aún más difícil.’ | ‘What I have tried to do is try to have a little more patience or try to understand that this is even more difficult for them.’ |
| Positive reframe, change perspective | 3 | 4.5 | ‘Tratar de pensar positivamente y estar tranquilos, pensando que todo va a estar bien.’ | ‘Trying to thinking positively and remain calm, thinking everything will be okay.’ |
| Connecting with others | 2 | 3.0 | ‘Poder hablar con ustedes y todos los demas padres del grupo ha sido de gran ayuda.’ | ‘Being able to talk to all of you (research study staff) and the other parents in the group has been the biggest help.’ |
| Religious coping | 1 | 1.5 | ‘La que mas he utilizado es que actuamos con fe, creer que existe un poder que nos va a ayudar a salir de esta y que el mejor camino es seguir a dios porque no hay de otro.’ | ‘The strategy I have used most is acting with faith, believing that there is a power that will help us through this, and that the best path is to follow God because there is no other.’ |
N = 66.
Potential long‐term impact of the pandemic on families
| Long‐term impact |
| % | Illustrative quote | Translation of quote if applicable |
|---|---|---|---|---|
| Economic challenges | 18 | 28.6 | ‘Lo único que me preocupa es los pagos que se tiene que hacer: la renta, los carros, la comida. Me preocupa que no haya mucho ingreso.’ | ‘The only thing that worries me is the payments that have to be made: rent, the cars, food. I am concerned that there will not be much income.’ |
| No impact | 11 | 17.5 | ‘Honestamente, no creo que nos afecta mucho.’ | ‘Honestly, I do not think it will affect us much.’ |
| Lack of child educational and developmental progress | 10 | 15.9 | ‘Creo que en la escuela, porque como no se mucho de internet, y las maestras no me contestan, no puedo acesar las clases de su escuela… y me preocupa a largo plazo sus estudios y en el desarrollo porque es mucho tiempo de estar sin clases.’ | ‘I think that in school, because I do not know much about the internet, and the teachers do not answer me, I cannot access his classes… and I'm concerned long term about his studies and development because it's a long time to be without classes.’ |
| Social changes (e.g. wearing masks, not seeing people) | 8 | 12.7 | ‘En la cuestion de socializar, eso es lo que está afectando todo nosotros. Nos afecta no poder salir a las compras, llevar a los niños a la escuela o al parque. Esas son las cosas que nos estan afectando.’ | ‘In the issue of socialising, that is what is affecting all of us. It affects us not being able to go shopping, take the children to school or to the park. Those are the things that are affecting us.’ |
| Positive impact | 6 | 9.5 | ‘You know what it's an eye opener for sure … being at home you appreciate what you normally do not. We do a lot more family activities, you know, boards games, things like that, then we did before.’ | |
| Emotional impact (e.g. anxiety, fear, boredom) | 5 | 7.9 | ‘Va a afectar demasiado, porque yo ya no estoy tranquila. Porque dicen tantas cosas en las noticias. Un dia dicen una cosa, otro dia dicen otra. Como ahora estan diciendo que la pandemia puede venir igual en invierno, y ya estoy pensando en invierno, que pasa otra vez lo mismo. Y pienso que ya las cosas no van a ser igual. Para mi, cambió todo todo todo.’ | ‘It will affect everything, because I am no longer calm. Because they say so many things on the news. One day they say one thing, another day they say another. Like now they are saying that the pandemic can come back the same in winter, and I am already thinking of winter, that the same thing happens again. And I think that things are not going to be the same. For me, it changed everything, everything, everything.’ |
| Unsure | 5 | 7.9 | ‘Ay dios mio. Creo que no lo sé, de verdad. Espero que no. Si no, nos daña mucho de esto.’ | ‘Oh my god. I think I do not know, really. I hope not. If not, it will hurt us a lot.’ |
N = 63.