Parents’ Perceptions of the Problems in Children With Autism Spectrum Disorders: A Qualitative Study (original) (raw)
Related papers
Iranian Rehabilitation Journal, 2022
Parents of children with autism spectrum disorder (ASD) have valuable experiences of the possible developmental problems and other issues of their children as the primary caregivers. The present study aimed to obtain proper information by considering these experiences using a qualitative approach to explain the parents' perception of problems in their children with ASD. Methods: This study with a qualitative design was performed on 35 parents of children with ASD (33 mothers and 2 fathers) who were selected via purposive sampling. The study data were collected using semi-structured interviews, and all sessions were recorded and immediately transcribed verbatim. We followed the Graneheim and Lundman (2003) content analysis approach (a step-by-step extraction of meaning unit, initial codes, subtheme, and theme). Results: We extracted 5 main themes of developmental, language comprehension and expression, social communication, behavioral, and general health problems. Each of these mentioned themes has several subthemes. Discussion: According to the results, the parents' perceptions and experiences of their ASD children's problems were similar to the findings reported by experts in a few related studies. Given the lived experiences of the parents of children with ASD, they could help enrich the references regarding the problems of children with ASD. Such data should be considered during the assessment and intervention for this group of children.
The Experience of Parenting Children with Autism Spectrum Disorder: A Qualitative Content Analysis
Child Care in Practice , 2021
Objective: The aim of this study was to explore the range of experiences encountered by parents and caretakers of children with autism spectrum disorder. Materials and methods: An inductive conventional content analysis approach was utilized for this study. Twenty-four (N = 24) parent responses to open-ended questions about their experience parenting a child with autism spectrum disorder were analyzed. Results: Based on content analysis of responses, five main categories emerged: emotional distress, growth and role change, perspective change, support or the need for support, and family strain. Within the main categories, 20 subcategories were identified. Conclusion: Findings from this study show that families and caretakers of children with autism spectrum disorder endorse many emotions and complex experiences, both positive and negative. The implications from these data are great and include the need for support and resources for families impacted by autism spectrum disorder.
Iranian Journal of Psychiatry and Behavioral Sciences
Background: Families face many challenges in caring for children with autism spectrum disorder (ASD) throughout their lives. Objectives: This study aimed to identify the needs of families of children with ASD from specialists and parents' perspectives. Methods: Semi-structured, in-depth interviews were conducted with ASD specialists (n = 19) and parents of children with ASD (n = 23). Interviews were audio-recorded and transcribed verbatim. Qualitative analysis was conducted using a content analysis approach. Results: The needs of families were divided into nine themes and 11 sub-themes from the perspective of experts and four themes and 17 sub-themes from the point of view of parents. Major themes identified from the perspective of ASD specialists as the main needs of families included knowledge, skills, attitude, social needs, financial needs, educational needs, mental health services, ability to handle other family issues, and ability to deal with the specific child's prob...
Parents’ journey into the world of autism
South African Journal of Child Health, 2015
Autism Spectrum Disorder (ASD) manifests as a qualitative impairment in an individual's social interaction and communication, as well as restricted, repetitive and stereotyped patterns of behaviour. [1] The core characteristics found in a child with ASD include difficulties in social communication, language and related cognitive skills, and behaviour, as well as emotional regulation. [2] Children with ASD can present with difficulties in all five aspects of language (phonology, semantics, syntax, morphology and pragmatic); these difficulties vary according to the particular diagnosis of each child. It is generally agreed upon that whatever the diagnosis of a child with ASD, deficits in pragmatic skills and theory of mind are always present. These social communication deficits of a child with ASD may create a limitation in social experience, contributing to impaired development and learning, and challenging behaviours. Thus, children with ASD require a clear and effective mode of communication. [3] Speech language pathologists (SLPs) play an important role in enhancing a child's daily language skills, but therapy needs to extend beyond the therapy environment as a means of improving quality of life and daily functioning. Disabilities with a social component (such as ASD) are transactional; this implies that the effect of the language deficit does not only affect the child but the communication partners as well. [4] Communication partners are required to modify their interactive style and the environment in order to ensure successful communication. [5] Consequently, SLPs should recognise the significance of family involvement in the therapy process. Together, the SLP and family members should assess and monitor the effectiveness of intervention for the child with ASD; [5] because programmes that include parents/ caregivers prove to be effective with the involvement of SLPs. [6] The study conducted was undergirded by two theoretical frame works, namely the family systems approach and the International Classification of Functioning, Disability and Health (ICF) for children. The family systems approach is based on the notion that an individual's behaviour should be viewed and addressed within the context of the family. [7] The family undergoes changes and development over time, through which they are able to achieve a state of homeostasis. [8] Children with ASD are faced with developmental challenges that affect parental and family functioning, resulting in significant stress for all family members. [9] ICF is an early classification scheme introduced by the World Health Organization; it defines disability under three components, namely impairment, activity limitations and participation restriction. [10] The ICF allows for individuals to be classified according to health domains (hearing, talking and memory) as well as healthrelated domains (education and social interaction). [10] The ICF classification allows for ASD to be classified as a disability, owing to the associated language impairment and limitation in activity participation. The ICF presents factors that result in functional limitations as well as factors that may enhance optimum functioning, thereby guiding SLPs to help children with language impairment to improve their daily functioning in terms of language, communication and interaction. [11] The challenges experienced by parents/caregivers in raising a child with ASD have been documented mainly in England, North America and Australia. [12] In addition, research regarding the communicative Background. Autism Spectrum Disorder (ASD) is a developmental disability that results in an impairment in an individual's social interaction and communication, as well as restricted, repetitive and stereotyped patterns of behaviour. Children with ASD display difficulties in the areas of social as well as communicative behaviour. Parents, caregivers and family members are the main communication partners of children with ASD. Living with a child with ASD can result in changes within a family system. Objective. To describe the challenges and experiences faced by families in their interaction with their child with ASD, caregiver coping strategies and the success of these strategies, and the generalisation and carryover of therapeutic strategies provided by a speech language pathologist (SLP). Methods. A qualitative descriptive research design was selected to explore the objectives of the study. Ten participants were recruited; all participants were parents of a child with ASD attending Learners with Special Educational Needs School in Gauteng, South Africa. Data were collected through a semistructured facetoface interview survey comprising open and closedended questions, and were analysed using thematic content analysis. Results. The results revealed five main themes, namely communicative challenges, family experiences, communicative coping strategies, speech and language therapy services and strategies provided by the SLPs. Communicative challenges were experienced by parents of one child with ASD. The communication and behaviour of children with ASD were found to affect the daily functioning of the family. The majority of parents reported not learning a new mode of communication, but rather adapting and adjusting to the communication of their child. Communicative coping strategies were required for novel social settings. There were mixed responses with respect to parent's abilities to access and learn new communicative coping strategies. Speech and language therapy assisted in improving the child's communication skills, while strategies provided by SLPs were explained to be effective even though generalisation of strategies was limited. Conclusion. This study concluded that parents and children with ASD experience challenges in communication and interaction. The family systems approach as well as the World Health Organization's International Classification of Impairments, Disabilities and Handicaps are two functional frameworks that can assist SLPs to provide intervention to children with ASD.
Experiences and perceptions of parents raising children with autism
Background The prevalence of autism spectrum disorder (ASD) in general and autism in particular is on raise globally and the need for evidence-based intervention and care for children with autism has grown, too. However, evidence on autism is scanty in developing countries including Ethiopia. With the aim to help fill the gap and paucity in research into the issue, the main purpose of this study is to explore, better understand, and document the experiences and perceptions of parents of children with autism. Methods Qualitative survey was used to collect data from a convenient sample of parents raising a child with autism. Twenty-one respondents completed the qualitative survey dispatched. Vast majority (about 80%) of the participants were mothers who were caring for their child with autism. Age of the participant parents ranged between 27 and 67 years (Mean Age = 44.00 years; Standard Deviation = 10.02 years). Ages of children with autism cared for ranged between 4 and 43 years (Me...
The Problems Of The FAMILIES Who Have Autistic Children: A Qualitative Research
Life Skills Journal of Psychology, 2018
Autism is defined as one of the neurodevelopmental disabilities which continue for life and affect social development, communication and behaviors of the individuals in a negative sense. Purpose of this study is to determine how parents with autistic children figure out the autism, what their reactions are and what the effect of the believe is to accept it, how they declare it to the people around them and how the reaction of people is, who and how they get support from and what the possible future difficulties and requirements are. The study was based on qualitative research method and interview form prepared based on the purpose by the researcher was used in the study. The study is based on case study which is a qualitative research method and uses an interview form that is prepared by the researcher according to the purpose of the study. Study group is composed of 15 mothers and 8 fathers selected by purposive sampling method among parents of children going to special education centers. Study results have been shown that, it was found that the parents first noticed the inadequacy of language development without noticing the autism. In addition, it was seen that the first reaction of the parents' children to get autism was also the intense sadness. There is another result which is that parents need to get information about an autism with the sadness they have experienced. Parents have expressed concern about the future of their children, depending on the strength of their children's selfexpression. It has been determined that the society has negative attitudes towards autistic children and that parents would like to see the society to be more moderate towards autistic children. Results have been determined, it is important to establish empirical studies that will increase the awareness of other individuals about autism while showing the needs for supporting from autistic families. Study findings have been discussed with similar study findings included in the literature.
Experiences and perceptions of parents raising children autism
2023
The prevalence of autism spectrum disorder (ASD) in general and autism in particular is on raise globally and the need for evidence-based intervention and care for children with autism has grown, too. However, evidence on autism is scanty in developing countries including Ethiopia. With the aim to help fill the gap and paucity in research into the issue, the main purpose of this study is to explore, better understand, and document the experiences and perceptions of parents of children with autism. To this end, we used qualitative survey to collect data from a convenient sample of parents raising a child with autism. The data collected were subjected to qualitative analysis that yielded several themes and subthemes including late diagnosis, parents' reactions to diagnosis, sources of information during and after diagnosis, differing reactions to having a child with autism from siblings, extended family members and the larger community, attribution of autism to several causes by the community, lack of recognition and open discussion of autism and lack of appropriated public educational and health care services for children with autism and their parents. The themes and subthemes identified were discussed in light of existing literature and implications for practice were drawn.
European Child & Adolescent Psychiatry, 2019
Background Autism Spectrum Disorder (ASD) is a neurodevelopmental condition diagnosed through the assessment of early-onset difficulties in social communication and repetitive behaviours and restricted interests, leading to dysfunctioning in at least two contexts (American Psychiatric Association, 2013; Lai, Lombardo, & Baron-Cohen, 2014). Parents are pivotal in the care of children with a (presumed) ASD diagnosis. Indeed, in understanding and supporting children with a diagnosis, parents occupy a central position (Lord, Elsabbagh, Baird, & Veenstra-Vanderweele, 2018; Mintz, 2018). Moreover, it has been argued that understanding ASD begins with listening to, communicating with, and learning from autistic people and their families, and by understanding their experiences (Bakan, 2018; Cascio, 2018). Several studies investigated parents' experiences of their child having ASD and getting an ASD diagnosis. Previous research investigated diagnostic best practices for ASD, and made recommendations to improve the diagnostic assessment, the disclosure of a diagnosis, and parents' satisfaction after the feedback session. For example, studies have shown that a clinician's manner during the disclosure of the ASD diagnosis was important, and a follow-up appointment was advised to take place within weeks after the
Listening and hearing the voices of parents with children with autism : a phenomenological study
2014
This study describes the experiences of parents who have a child with autism. Four themes emerged from a thematic analysis of in depth interviews with eight parents. All the parents interviewed experienced a sense of isolation which often manifested itself in a reluctance to participate in social events. Also, the advent of having a child with autism impacted families in different ways, however variably all the parents described feeling overwhelmed due to the demands associated with services and care for their child. Lack of support from family, friends and school districts was noted. The study points out that it is necessary to provide continuous opportunities for parents to engage with others who have experienced the same phenomenon in order to share experiences and feel connected to one another.