Necessary Information for the Families of Children with Autism Spectrum Disorder: An Integrative Review

Abstract

Objective: To identify the available evidence on the necessary information for the families of children with Autism Spectrum Disorder (ASD). Method: An integrative literature review carried out in six databases with specific descriptors for each one. Studies published on the theme between January 2014 and February 2020 available in full and free of charge were selected. For synthesis and analysis of data, thematic categorization was performed. 41 articles were included. Results: Two thematic categories were obtained. In the first category (“need for information”), the families’ lack of knowledge about ASD (treatment, how to deal with the child’s behavior, and future perspectives), rights of the child with ASD, and resources to obtain information were identified. The second category (“information support sources accessed by the families”) comprised informal sources (family members, friends, neighbors, and parents of children with ASD), formal sources (professionals and institutions), the Internet, and other resources (books, workshops, podcasts). Positive and negative aspects were found in the use of these sources. Conclusions: A pattern of information requested by the family was verified, as well as sources used to obtain it. These data are relevant to support the organization of sources of informational support for the families and the community.

Institutional and family support impact on health‐related quality of life of children with autism spectrum disorders during the COVID‐19 pandemic

“…During the COVID‐19 pandemic, institutional and family support significantly affected the HRQoL of children with ASD, especially related to their functioning at school. Caring for children with ASD is a challenging process that causes caregivers to feel helpless and frustrated, so families need support from family members (Papadopoulos, 2021; Weissheimer et al, 2020). Family members' support is meant for families with ASD because it can decrease burden and stress, improve good relationships among family members, thus impact on mental health of children, and improve family well‐being (Choudhury & Chandel, 2022; Windarwati et al, 2020).…”

“…Family members' support is meant for families with ASD because it can decrease burden and stress, improve good relationships among family members, thus impact on mental health of children, and improve family well‐being (Choudhury & Chandel, 2022; Windarwati et al, 2020). Support can be provided in the form of emotional support, instrumental support, support during feelings of low self‐esteem, and information that will help them care for their children (Choudhury & Chandel, 2022; Weissheimer et al, 2020). Apart from the family, support from the school and especially the parent‐teacher relationship has a beneficial impact on children's outcomes (Garbacz et al, 2016).…”

Exploring Challenges and Needs of Parents Providing Care to Children with Autism Spectrum Disorders: A Qualitative Study

“…Another concerning need of parents with an ASD child is access to health services. Parents face many obstacles and challenges in accessing health services (9). Access to information about the disorder, treatments, services, and the health care network can help these parents cope with the situation and the diagnosis (2).…”

Nursing intervention to meet the family members’ needs during the surgery waiting time

“…During the surgery waiting period, the family members must be informed as to whether the procedure is demanding more time than the expected and offered the possibility of communicating with the surgeon after the procedure ( 3 ) . In turn, the uneasy situation becomes one of the main barriers to learning and, as time progresses ( 4 ) and the family remains unaware of what is happening to the patient, these fears are increased, the family members’ need for information is high ( 5 ) , and many family members can feel dissatisfied with the support and information received ( 6 ) .…”