Search results

The purpose of this study is to assess psychological distress among parents of children with autism spectrum disorder (ASD), self-esteem as a predictor of such distress and the effect of coping strategies.

A descriptive correlational study design was conducted using a convenient sample of parents of ASD children (N = 93).

This study revealed that the parents of an ASD child experienced a high level of anxiety (M = 15.89), a moderate level of depression (M = 15.85) and a mild level of stress (M = 16.86). Parents of ASD children also reported a low self-esteem score (M= 13.27). Mothers of ASD children reported higher levels of psychological distress, lower levels of self-esteem and more frequent utilisation of maladaptive coping strategies than fathers of ASD children.

Parents of children with ASD experience a significant level of psychological distress; however, this may be improved by developing programmes and psychological interventions focused on improving parents’ self-esteem and using more active coping strategies.

To the best of the authors’ knowledge, this is the first study conducted in Saudi Arabia that predict the psychological status among family caregivers of an autistic child.

To reveal the emotions and information needs expressed by Chinese parents of children with autism spectrum disorder (ASD) in an online forum, and their relationship.

The 10,062 data were from “Yi Lin”, China’s largest online forum for ASD. Open coding identified parents’ emotions and information needs, and a chi-squared test explored the correlation.

First, parents’ emotions were categorized into four themes: emotions about coping with their child’s care, emotions about the parents’ own behavior, emotions about social support with other parents and emotions about anticipating the future. Parents’ overall emotions were negative (72.47%), while the tendency of emotions varied among the four themes. Second, five information needs topics were expressed: intervention and training of ASD, parenting experiences, schooling issues, social interaction and support and future development. Different information needs topics contained different themes of emotions. Third, the tendency of emotions and expression of information needs were significantly correlated. Negative emotions had a statistically significant correlation in expression of information needs.

This study reveals the relationship between the emotions and information needs expressed by parents of children with ASD. The ASD forum could develop emotional support modules and functions for parents and facilitate emotional communication between parents.

This study aims to explore the information needs of Chinese parents of children with Autism Spectrum Disorder (ASD) and how these needs evolve as their children develop.

This study collated 17,122 questions regarding raising children with ASD via the Yi Lin website until November 2021.

The information needs of parents of children with ASD were classified into two categories: 1) Cognition-motivation: related to children with ASD; and 2) Affection-motivation: related to their parents. Child development causes the adaptation of information needs of these parents. Within the first three years, nine different topics of these parents' information needs were identified. Major information needs at this stage are as follows: intervention content, intervention methods and pre-diagnosis questions. During the ages of three to six years, there were 13 topics of information needs for parents, focusing on three areas: intervention content, intervention methods and diagnosis and examination. There are eight topics of information needs post six years. Parents are more concerned with the three topics of intervention content, life planning and intervention methods.

This novel study indicates the complex and changing information needs of parents of children with ASD in China. It may enhance the understanding of the information needs of these parents at theoretical and practical levels, provide support for them to understand their own information needs and provide a reference for relevant government and social organisations to provide targeted information services for them.

The peer review history for this article is available at: https://publons.com/publon/10.1108/OIR-04-2022-0247

The purpose of this paper is to identify knowledge sharing practices used among parents with children diagnosed with autism spectrum disorder (ASD).

The study was based on qualitative philosophical foundations, where phenomenological case study design was used to make an in-depth understanding of how parents whose children are diagnosed with ASD shared knowledge among themselves. The population for this research consists of parents whose children have been diagnosed with ASD in Ghana. The study sampled for the study was 12 parents and was selected from 4 autism awareness centres in Ghana to obtain data through the use of focus group discussion and analysed with the aid of thematic analysis.

The study showed that the dimensions of knowledge sharing practices used by parents with autistic children were after-action review/lesson learnt, brainstorming, mentoring, coaching system, discussion forum, face-to-face meeting, documentation, peer assistance and storytelling. Finally, the study also revealed that knowledge sharing practices used by parents with autistic children help them in their daily engagement.

An aspect of the training of social workers should focus on how to assist parents, family and neighbours of children with ASD. The government through the needed ministries and agencies should create a social support system to assist parents and families with children with ASD. Counsellors should avail their services to parents with children with ASD as early as possible to avoid or ameliorate some of the emotional and psychological challenges of these parents.

The paper offers a comprehensive overview on how knowledge sharing transforms the individual to learn and accept autistic condition in Ghana.

The purpose of this investigation is to gain insight into parents' perceptions of benefits vs burdens (value) of educational and healthcare service received for their child with ASD. Parents are the main integrators of long-term educational and healthcare service for their child with ASD.

Design/methodology/approach included (1) a sentiment analysis of discussion forum posts from an autism message board using a rule-based sentiment analysis tool that is specifically attuned to sentiments expressed in social media and (2) a qualitative content analysis of one-on-one interviews with parents of children diagnosed with ASD, complemented with interviews with experienced educators and clinicians.

Findings reveal the link between customized service integration and long-term benefits. Both parents and service providers emphasize the need to integrate healthcare and educational service to create holistic long-term care for a child with ASD. Parents highlight the benefits of varied services, but availability or cost are burdens if the service is not publicly provided, or covered by insurance. Service providers' lack of experience with ASD and people's ignorance of the challenges of ASD are burdens.

Ensuring health outcomes for a child with ASD requires an integrated service system and long-term, customer-centric service process because the scope of service covers the child's entire childhood. Customized educational and healthcare service must be allocated and budgeted early in order to reach the goal of a satisfactory service output for each child.

This is the first service research to focus on parents' challenges with obtaining services for their child with ASD. This paper provides service researchers and managers insight into parents' perceptions of educational and healthcare service value (i.e. benefits vs. burdens) received for their child with ASD. These insights into customer-centric perceptions of value may be useful to research and may help service providers to innovate and provide integrated service directly to parents, or indirectly to service providers, who serve children with ASD.

Using Andersen’s (1968) behavioral model of health services use as a guiding conceptual framework, this study examined how receipt of family-centered care relates to the perceived family challenges for families of children with autism spectrum disorder (ASD).

Data from the 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) were analyzed for 812 parents of children with ASD.

Multiple regression analyses provided substantive statistical evidence that a child’s race, the adequacy of a family’s insurance, and the stability of child’s health care needs significantly contributed to predicting his or her receipt of family-centered care. Further results suggested a relationship between receipt of family-centered care and the perception of challenge for these families; families receiving family-centered care perceive fewer challenges and feel less unmet need for child health services.

Family-centered professionals provide critical voices in the development of policies and programs geared toward improving the health outcomes of children with ASD and their families.

The purpose of this paper is to compare experiences of two parents of adolescents with Autism Spectrum Disorder (ASD) differing in gender, including their daily routines at school and at home, challenging behaviour, social support and future plans for their children.

The parents of the two adolescents with ASD were interviewed with open-ended questions related to their children as well as their personal experiences, along with getting their individual responses for the established Satisfaction with Life Scale (SWLS).

There were similarities and differences in the parents’ experiences with their adolescent children with ASD. Similarities included a limited social support outside their families, hopes for the future of their children, where in they emphasised the need for some “normality” for their child, and a lack of plan in terms of legal guardianship and written wills after their own time. Some of the differences were also noted in the parents’ description of symptoms of their children, with the father of the female adolescent reporting more negative experiences both with his child, as well as with his spouse, a lack of social support and, subsequently, more “dissatisfaction” on the SWLS than the mother of the male adolescent.

One of the major limitations of this study is the absence of feedback from the other parent besides the one being interviewed, due to which only one parental perspective was provided here.

There are vital social implications of this study. Both parents reported a limited social support due to which they expressed the need for increasing awareness for ASD in the general society. These findings illustrate the need for a focus on designing interventions for improving outcomes for both parent and child in similar situations.

This study compared the experiences of two parents of adolescents with ASD, differing in gender and symptomology, but similar in other respects, including the family demographic characteristics and cultural context.

The purpose of this study is to investigate the information-seeking behavior of Egyptian parents of autistic children.

The study sample consists of 61 parents across Egypt, divided into six focus groups, as equal as possible, to represent Northern, Middle and Southern Egypt.

Dmographically, of the 61 parents, 32 (52.5%) were fathers, and 29 (47.5%) were mothers. A large number of parents' ages ranged from 31 to 45 years old. The highest percentage of them was holding a BA, followed by a high school/diploma, and the highest percentage was found to be married. The parents of autistic children followed many methods and channels to obtain supportive information related to their children's disease. They used many types of information, which varied between formal and informal sources. While just over a quarter of Egyptian parents prefer to use formal sources (books, newspapers, magazines, health publications, pamphlets, as well as specialized libraries), more than three-quarters of them used informal sources, such as mobile/smartphones, the Web, social media and social networking sites. The information related to the search for institutions supporting autistic people came in the first place, then that information related to searching for specialized centers in treating autistic children, then information related to rehabilitation, integration and psychological support centers for these children and then information related to the search for financial aid provided by charitable or even government agencies. Some parents were found to have limited awareness of their children's treatment mechanism, as some of them do not consider the need to treat their children in a systematic, continuous, and systematic manner. Similarly, the lack of basic services and shortage of government centers specializing in the treatment of these children. Parents also emphasized the lack of government support, as well as the lack of curative research centers. Some also pointed out that there was a shortage of workshops for the rehabilitation of their children and themselves as well.

This research is considered to be the first research of its kind at the local and Arab levels, which is also one of the few studies at the regional level that is interested in this community of information seekers. The findings of this research can raise awareness about the information behavior of Egyptian parents of autistic children among those who are interested in the role of the information and its use by specific groups of the information society, as well as decision makers.

The peer review history for this article is available at: https://publons.com/publon/10.1108/OIR-11-2020-0494