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Open accessJournal ArticleDOI: 10.3390/BRAINSCI11030309

Mothers' Experiences and Challenges Raising a Child with Autism Spectrum Disorder: A Qualitative Study.

02 Mar 2021-Brain Sciences (Multidisciplinary Digital Publishing Institute)-Vol. 11, Iss: 3, pp 309
Abstract: Although the study of autism is burgeoning with important implications both for public health and society, there is little research exploring the experiences of raising a child with autism spectrum disorder (ASD) from the maternal perspective. The aim of this study was to investigate the lived experiences of mothers of children with ASD in Greece. Nine mothers of children with ASD were recruited and engaged in semistructured interviews. Transcripts of the interviews were analyzed using interpretative phenomenological analysis. Three interconnected themes were identified in the analysis: (a) emotional burden, (b) family burden, and (c) social burden. A key finding in the themes was the sense of burden, distress, and vulnerability experienced by the mothers. The findings provide valuable understanding of the experiences of mothers raising children with ASD in one of Europe’s medium-income countries. Further, results can be used by researchers, clinicians, mental health providers, and policy makers to address the unique needs of families caring for and supporting children with ASD.

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Topics: Autism (56%), Interpretative phenomenological analysis (54%), Autism spectrum disorder (53%) ... read more
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Journal ArticleDOI: 10.1080/13575279.2021.1939655
Abstract: The aim of this study was to explore the range of experiences encountered by parents and caretakers of children with autism spectrum disorder.An inductive conventional content analysis approach was...

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Topics: Autism (60%), Autism spectrum disorder (58%)

1 Citations


Open accessJournal ArticleDOI: 10.1155/2021/6614490
Sabitri Acharya1, Kalpana Sharma1Institutions (1)
Abstract: Background Autism is a neurodevelopmental problem that is increasing at an alarming rate worldwide. Rearing and caring for children with autism depends upon the perception of mothers and various factors associated with it. There is a gap in the literature regarding the detailed accounts of mother's experiences regarding autism in Nepal. Hence, this study was undertaken to explore lived experiences of mothers raising children with autism. Materials and methods Qualitative phenomenological study design was used and nine mothers with autistic children were selected using purposive sampling technique. Data were collected using in-depth interview guidelines and analyzed using Colaizzi's steps. Results Findings of the study revealed that mothers raising children with autism encountered numerous problems in their life. They felt physically exhausted due to the continuous supervision of their child. Emotional problems such as denial, upset/sadness, and worry were also common among them. In addition, all mothers faced social problems such as social blame, social isolation, and ignorance from their relatives and society due to the atypical behavior of their child. Furthermore, the economic problem was also acute among mothers due to job loss, costly medical treatment, and therapies. So, to deal with the stressors they faced, mothers adopted various coping strategies such as respite care, problem-focused strategies, religious coping, and positive coping in their everyday life. Conclusion In conclusion, to the authors' knowledge, this is the first study documenting the experiences of Nepalese mothers having autistic children. Hence, health care professionals need to pay more attention to address the problems of mothers while treating their autistic children. The Government of Nepal also needs to formulate a policy for the rehabilitation of autistic children in society.

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Topics: Autism (59%), Coping (psychology) (53%), Respite care (51%) ... read more

Open accessJournal ArticleDOI: 10.1016/J.PAID.2021.111351
Ruodan Wang1, Qing Liu1, Wenjuan Zhang2Institutions (2)
Abstract: This study used the meta-analysis structural equation modeling (MASEM) method to explore the relationship between coping (positive and negative), social support, and family quality of life for caregivers of individuals with autism. Through a meta-analysis of 29 studies (N = 4864), the following results were found: (1) Positive coping by caregivers significantly positively predicted social support (β = 0.27) and family quality of life (β = 0.12). Negative coping significantly negatively predicted social support (β = −0.18) and family quality of life (β = −0.18). The social support of caregivers significantly positively predicted family quality of life (β = 0.30). (2) Positive coping and negative coping by caregivers had significant indirect effects on their family quality of life through social support (β = 0.08, β = −0.05, respectively). It can be seen from the results that social support of caregivers of individuals with autism partially mediates the relationship between coping (positive and negative) and family quality of life. In addition, the results of the moderator analyses showed that caregivers with spouses were more likely to reduce social support when they adopted negative coping than caregivers without spouses (p = .022).

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Open accessJournal ArticleDOI: 10.3390/CHILDREN8110953
Dimitrios Papadopoulos1Institutions (1)
22 Oct 2021-Children today
Abstract: Parenting gifted and talented (G/T) children is a journey with unique experiences that can differ from the lived experiences of parents raising non-gifted and talented children. These unique experiences typically raise concerns, influence decisions, and exacerbate stress and anxiety regarding the children’s future development and education. The purpose of this paper is to provide an overview of the current literature in order to highlight the topic of parenting G/T children with a focus on their exceptional social-emotional needs. Studies support the conclusion that significant determinants of G/T children’s personal growth are authoritative parenting, which provides autonomy and self-motivation, and parents’ behaviors and attitudes toward the exceptional needs of G/T children. Conversely, authoritarian parenting negatively impacts children’s well-being and mental health, impeding the positive development of the child’s potential. Enhancing the caregiving capacity of family members—by reducing the stress associated with their parenting and caregiving roles—can have a powerful impact on the developmental trajectory of gifted children.

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Open accessJournal ArticleDOI: 10.3390/CHILDREN8090763
31 Aug 2021-Children today
Abstract: Background: Children’s Friendship Training (CFT) is a parent-assisted intervention programme that introduces children to basic sets of social rules to help them understand social contexts with specific guidance from their parents. It has been reported in several empirical studies that the friendship skills of children with autism spectrum disorder were enhanced after participating in CFT. However, previous studies only focused on the effectiveness of the training without exploring it from the parent’s perspective. As such, the objective of this study is to highlight the parents’ experience in assisting in the implementation of CFT. Purpose: To explore the parents’ experiences with autism spectrum disorder (ASD) in CFT and examine the experiences using the CFT as a theoretical framework. Methodology: In this study, eight parents and their school-aged children with ASD participated in 12 CFT sessions. Upon completing the CFT, the parents participated in a focus group interview. The interview session was video recorded and transcribed with the parents’ consent. Thematic analysis was employed in analysing the collected data as outlined in six different phases. Results: The generated data revealed the similarities and differences in parents’ experiences in the CFT. The current study has identified four main themes: (1) fear and resistance; (2) awareness, learning, and adjustment; (3) change is hard; and (4) identifying support. Conclusions: The findings highlighted the processes that these parents experienced and encountered while attending the CFT programme, it is important to consider these processes based on how they might impact the effectiveness of the programme. The programme’s effectiveness is reliant on the ability to work closely with parents to understand their challenges and explore the type of support they need. This study has analysed the crucial factors that provide an overview of parents’ encounters in their participation in CFT.

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Topics: Thematic analysis (51%), Friendship (50%)
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82 results found


Open accessBook
03 Jun 2009-
Abstract: Interpretative phenomenological analysis (IPA) is an increasingly popular approach to qualitative inquiry. This handy text covers its theoretical foundations and provides a detailed guide to conducting IPA research. Extended worked examples from the authors' own studies in health, sexuality, psychological distress and identity illustrate the breadth and depth of IPA research. Each of the chapters also offers a guide to other good exemplars of IPA research in the designated area. The final section of the book considers how IPA connects with other contemporary qualitative approaches like discourse and narrative analysis and how it addresses issues to do with validity. The book is written in an accessible style and will be extremely useful to students and researchers in psychology and related disciplines in the health and social sciences.

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6,626 Citations


Open accessBook
Jonathan A. Smith1, Mike Osborn2Institutions (2)
25 Dec 2021-
Abstract: The aim of interpretative phenomenological analysis (IPA) is to explore in detail how participants are making sense of their personal and social world, and the main currency for an IPA study is the meanings particular experiences, events, states hold for participants. The approach is phenomenological (see Chapter 3) in that it involves detailed examination of the participant’s lifeworld; it attempts to explore personal experience and is concerned with an individual’s personal perception or account of an object or event, as opposed to an attempt to produce an objective statement of the object or event itself. At the same time, IPA also emphasizes that the research exercise is a dynamic process with an active role for the researcher in that process. One is trying to get close to the participant’s personal world, to take, in Conrad’s (1987) words, an ‘insider’s perspective’, but one cannot do this directly or completely. Access depends on, and is complicated by, the researcher’s own conceptions; indeed, these are required in order to make sense of that other personal world through a process of interpretative activity. Thus, a two-stage interpretation process, or a double hermeneutic, is involved. The participants are trying to make sense of their world; the researcher is trying to make sense of the participants trying to make sense of their world. IPA is therefore intellectually connected to hermeneutics and theories of interpretation (Packer and Addison, 1989; Palmer, 1969; Smith, in press; see also Chapter 2 this volume). Different interpretative stances are possible, and IPA combines an empathic hermeneutics with a questioning hermeneutics. Thus, consistent with its phenomenological origins, IPA is concerned with trying to understand what it is like, from the point of view of the participants, to take their side. At the same time, a detailed IPA analysis can also involve asking critical questions of the texts from participants, such as the following: What is the person trying to achieve here? Is something leaking out here that wasn’t intended? Do I have a sense of something going on here that maybe the participants themselves are less aware of?

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5,211 Citations


Open accessJournal ArticleDOI: 10.15585/MMWR.SS6904A1
Matthew J. Maenner1, Kelly A Shaw1, Jon Baio1, Anita Washington1  +30 moreInstitutions (12)
27 Mar 2020-
Abstract: Problem/condition Autism spectrum disorder (ASD). Period covered 2016. Description of system The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years whose parents or guardians live in 11 ADDM Network sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). Surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by medical and educational service providers in the community. In the second phase, experienced clinicians who systematically review all abstracted information determine ASD case status. The case definition is based on ASD criteria described in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Results For 2016, across all 11 sites, ASD prevalence was 18.5 per 1,000 (one in 54) children aged 8 years, and ASD was 4.3 times as prevalent among boys as among girls. ASD prevalence varied by site, ranging from 13.1 (Colorado) to 31.4 (New Jersey). Prevalence estimates were approximately identical for non-Hispanic white (white), non-Hispanic black (black), and Asian/Pacific Islander children (18.5, 18.3, and 17.9, respectively) but lower for Hispanic children (15.4). Among children with ASD for whom data on intellectual or cognitive functioning were available, 33% were classified as having intellectual disability (intelligence quotient [IQ] ≤70); this percentage was higher among girls than boys (39% versus 32%) and among black and Hispanic than white children (47%, 36%, and 27%, respectively) [corrected]. Black children with ASD were less likely to have a first evaluation by age 36 months than were white children with ASD (40% versus 45%). The overall median age at earliest known ASD diagnosis (51 months) was similar by sex and racial and ethnic groups; however, black children with IQ ≤70 had a later median age at ASD diagnosis than white children with IQ ≤70 (48 months versus 42 months). Interpretation The prevalence of ASD varied considerably across sites and was higher than previous estimates since 2014. Although no overall difference in ASD prevalence between black and white children aged 8 years was observed, the disparities for black children persisted in early evaluation and diagnosis of ASD. Hispanic children also continue to be identified as having ASD less frequently than white or black children. Public health action These findings highlight the variability in the evaluation and detection of ASD across communities and between sociodemographic groups. Continued efforts are needed for early and equitable identification of ASD and timely enrollment in services.

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Topics: Autism (51%), Autism spectrum disorder (50%), Pacific islanders (50%)

1,729 Citations


Journal ArticleDOI: 10.1191/1478088706QP062OA
Abstract: In this paper, we discuss two complementary commitments of interpretative phenomenological analysis (IPA): the phenomenological requirement to understand and ‘give voice’ to the concerns of participants; and the interpretative requirement to contextualize and ‘make sense’ of these claims and concerns from a psychological perspective. The methodological and conceptual bases for the relationship between these phenomenological and interpretative aspects of IPA appear to be underdeveloped in the literature. We, therefore, offer some thoughts on the basis of this relationship, and on its context within qualitative psychology. We discuss the epistemological range of IPA's interpretative focus, and its relationship to the more descriptive features of phenomenological analysis. In order to situate our conclusions within a contextualist position, we draw upon concepts from Heideggerian phenomenology. The argument is illustrated by excerpts from our own research on relationship break-up. We conclude by encouraging ...

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1,709 Citations


Open access
28 Mar 2014-
Abstract: PROBLEM/CONDITION Autism spectrum disorder (ASD). PERIOD COVERED 2010. DESCRIPTION OF SYSTEM The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system in the United States that provides estimates of the prevalence of ASD and other characteristics among children aged 8 years whose parents or guardians live in 11 ADDM sites in the United States. ADDM surveillance is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional providers in the community. Multiple data sources for these evaluations include general pediatric health clinics and specialized programs for children with developmental disabilities. In addition, most ADDM Network sites also review and abstract records of children receiving special education services in public schools. The second phase involves review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if a comprehensive evaluation of that child completed by a qualified professional describes behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides updated prevalence estimates for ASD from the 2010 surveillance year. In addition to prevalence estimates, characteristics of the population of children with ASD are described. RESULTS For 2010, the overall prevalence of ASD among the ADDM sites was 14.7 per 1,000 (one in 68) children aged 8 years. Overall ASD prevalence estimates varied among sites from 5.7 to 21.9 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and racial/ethnic group. Approximately one in 42 boys and one in 189 girls living in the ADDM Network communities were identified as having ASD. Non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children. Among the seven sites with sufficient data on intellectual ability, 31% of children with ASD were classified as having IQ scores in the range of intellectual disability (IQ ≤70), 23% in the borderline range (IQ = 71-85), and 46% in the average or above average range of intellectual ability (IQ >85). The proportion of children classified in the range of intellectual disability differed by race/ethnicity. Approximately 48% of non-Hispanic black children with ASD were classified in the range of intellectual disability compared with 38% of Hispanic children and 25% of non-Hispanic white children. The median age of earliest known ASD diagnosis was 53 months and did not differ significantly by sex or race/ethnicity. INTERPRETATION These findings from CDC's ADDM Network, which are based on 2010 data reported from 11 sites, provide updated population-based estimates of the prevalence of ASD in multiple communities in the United States. Because the ADDM Network sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States population. Consistent with previous reports from the ADDM Network, findings from the 2010 surveillance year were marked by significant variations in ASD prevalence by geographic area, sex, race/ethnicity, and level of intellectual ability. The extent to which this variation might be attributable to diagnostic practices, underrecognition of ASD symptoms in some racial/ethnic groups, socioeconomic disparities in access to services, and regional differences in clinical or school-based practices that might influence the findings in this report is unclear. PUBLIC HEALTH ACTION ADDM Network investigators will continue to monitor the prevalence of ASD in select communities, with a focus on exploring changes within these communities that might affect both the observed prevalence of ASD and population-based characteristics of children identified with ASD. Although ASD is sometimes diagnosed by 2 years of age, the median age of the first ASD diagnosis remains older than age 4 years in the ADDM Network communities. Recommendations from the ADDM Network include enhancing strategies to address the need for 1) standardized, widely adopted measures to document ASD severity and functional limitations associated with ASD diagnosis; 2) improved recognition and documentation of symptoms of ASD, particularly among both boys and girls, children without intellectual disability, and children in all racial/ethnic groups; and 3) decreasing the age when children receive their first evaluation for and a diagnosis of ASD and are enrolled in community-based support systems.

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Topics: Autism (76%), Autism spectrum disorder (69%)

1,344 Citations