Understanding autism spectrum disorder and coping mechanism by parents: An explorative study (original) (raw)
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International Journal of Environmental Research and Public Health
Background: The prevalence of Autism Spectrum Disorder (ASD) has been increasing for the past two decades. Parents with autism have been known to be at risk of psychological distress and maladaptation, but many parents were able to overcome this adversity and lead to a good quality of life. Methods: In-depth interviews were conducted among 21 parents of children with ASD. Interviews were transcribed and evaluated using thematic analysis. Results: The analysis discovered three main themes: acceptance and positive outlook, reaching for helping hands, and understanding autism and finding its solutions. Conclusions: Although the findings cannot be generalised to other populations with ASD, this study provides a detailed perspective on their unique coping strategies. Insights gained from this study could help health care providers, authorities, and communities to address a specific need and able to advocate relevant support measures to assist them.
Caring for Children Diagnosed with Autism Spectrum Disorder: Caregivers’ Experiences
Africa Journal of Nursing and Midwifery, 2020
Although awareness about autism has increased in developed countries, more so than in developing countries, autism spectrum disorder (ASD) remains poorly understood by most South Africans, especially those in remote areas and in areas where research is limited. Furthermore, intervention services are often scarce or not available due to lack of knowledge amongst healthcare professionals. The current study aimed to explore caregivers’ experiences of children with ASD in the Ehlanzeni District, Mpumalanga, South Africa. The study adopted a qualitative approach, and data was collected using semi-structured interviews, in which an interview guide was used. Twelve participants were selected purposively from the three different schools in the Ehlanzeni District and interviewed for the study. The data was analysed using thematic content analysis. The study adhered to ethical considerations. The findings of the study indicated that caregivers of children diagnosed with ASD experienced psycho...
Autism Research, 2012
Autism Spectrum Disorders (ASD) are increasingly recognized in developing countries like India. However, little is known about the experiences of parents raising a child with ASD. This study aimed to describe the experiences of families in Goa, India with a view to understanding the unmet needs of families raising a child with ASD. Twenty in-depth interviews and nine focus group discussions were carried out with families of children with ASD and key community stakeholders such as special educators, teachers, and parents of typically developing children. This qualitative data was triangulated to explore the experiences, life impact, and unmet needs of raising a child with ASD. Key findings suggest that raising a child with ASD puts a tremendous strain on families due to competing commitments, often leading to initial social withdrawal with later reintegration into social networks. Second, the impact is multidimensional, involving the personal sphere but also extending into the wider community with negative experiences of discrimination. Third, parents actively respond to these challenges through a range of approaches with help from existing and new social support networks and health care providers. Fourth, professionals from the health, education, and religious sectors have a low awareness of the unique needs of families living with ASD which leads to a considerable economic and emotional burden on families. Finally, as a consequence of these experiences, several unmet needs can be identified, notably for supporting increasingly isolated families and the limited access to multidisciplinary evidence-based services for ASD.
Challenges and Coping Strategies for Parents with Autistic Children
Journal of Mental Disorders and Treatment, 2018
Studies so far look at the causes and cure for autism, however, little work has been done on the challenges parents of these children face in their upbringing. This study brought out the challenges that parents with autistic children face as well as the coping mechanisms these parents adopt in their quest to cater for their children. Semi structured interviews were used as a form of data collection. Prominent themes the study highlights is the challenges of parents, which was associated with the inability of the parents to have meaningful conversations with their children, the financial burden of taking care of them, stigmatization of their autistic children as well as themselves, and the demandingness of the autistic children. With these problems, parents in the study adapted to their situation by accepting the situation of their wards, depending on God for strength, receiving support and encouragement from some family members and friends, joining support groups, as well as taking leave from work to help their children seek proper medical care. Knowing the challenges parents with children with autism face would constitute grounds for support to be given to them by professionals. If the challenges the parents are going through are clearly spelt out, therapists who deal with the families of children with this disorder will know the type of treatments to provide, even if it has not been asked for. Aside helping therapeutic professionals, the findings will also inform the teachers at special schools as to how to draw their curriculum to meet the needs of the autistic children. This goes to show that the findings of this work will make meaningful contributions to policy making, research and practice. The aim of this study is therefore to find out the challenges and coping strategies adopted by parents with autistic children. Methods The current study is designed to have a qualitative background, using the phenomenological approach. This research design was selected to assist the researcher get a better understanding of the experiences faced by parents of children with ASD and also help in gaining the opportunity to observe the nonverbal cues, aside the spoken word from the interviews that were conducted. The study was conducted in the Greater Accra region of Ghana. Majority of the research work was done at PACID, an institution for parents who have children with disabilities and certain parts of Accra. A total number of ten parents were interviewed for the purpose of this research. To ensure gender representation, the researcher interviewed two male parents and seven female parents. One of the participants was a sister who was taking care of her brother who had autism. There were variations in occupation, which included both the formal and informal sectors of the Ghanaian economy. Most of the
The Experiences of Parenting a Child with Autism Spectrum Disorder (ASD) in Bhutan
Bhutan Journal of Management, 2021
The World Health Organization (2001) acknowledges that when a person in a family has a disability, the family members also experience the disability due to close contact with the disability, terming it as "third-party disability." Parents in general, are the primary caregivers to children with disabilities and are bound to face challenges as a result of the disabilities. This study explores the lived experiences of parents of children with Autism Spectrum Disorder (ASD) in Bhutan; the challenges they face, and the coping strategies they adopt in parenting a child with ASD. Semi-structured interviews were conducted with 15 participants who were parents of a child with ASD. Three stages that exhibit the experiences of the parents were discovered, namely crisis event, stressors, and coping and adaptation, using the double ABC-X model. The findings of the study can provide insights into the lives of Bhutanese parents of children with ASD, and deliver information on how it impacts the parents. This will create awareness and understanding about ASD and how it affects not just the child with disabilities but also the caregivers. It will also help parents, especially new parents to children with ASD, on how to tackle the stressors they are likely to face and how to adapt to raising a child with ASD through the experiences of the other parents. In addition, the study provides recommendations on how government and society can help better the lives of children with ASD and their families.
2016
The principal aim of the present study was to explore the experiences of Black South African caregivers with children that present with Autism Spectrum Disorder (ASD) symptoms. The specific objectives were, inter alia, to discover how these caregivers interpret and understand their children‘s symptoms, the kind of help providers (African and/or Western) they approached in search of diagnosis and healing for their children‘s illness, and the specific ways their efforts impacted on their lives. The findings showed that the participating caregivers were severely and negatively affected in four main ways in their journey towards obtaining an understanding and a cure for their children‘s ASD symptoms. These negative effects included firstly, the stress and demoralizing experience when discovering that they had children with ASD symptoms. Secondly, there was emotional restlessness and lack of closure that came with knowing that there would be no predictable way of finding a lasting soluti...
The Intervention to Enhace the Coping of Parents of Children with Autism
Psychiatry Nursing Journal (Jurnal Keperawatan Jiwa), 2022
Introduction: Autism is a disruption verbal, nonverbal, and social interaction growth in children. Children with autism spectrum disorder have a different parenting program with normal children. A mother who has autism spectrum disorder children need for more space up her time to treat their children right, and sometimes they will have their stress moments because of what they think about their autism spectrum disorder children. This study aims to explain the interventions to enhace the coping of parents of children with autism.Method: The literature was searched using electronic database: Scopus, CINAHL, Science Direct, Sage, Google Schoolar with inclusion criteria include: parents of children with Autism Spectrum Disorder, articles published in 2011-2021 using experimental studies in English and Indonesian. Ten articles obtained for review.Result: Ten articels that fulfill a searching requirement and chosen to be analyzed. From ten articels there are divided into two interventions...
Coping strategies and education of parents of autistic children in Bangladesh
Bangladesh Journal of Medical Science, 2020
Objectives: Bangladesh is a country characterized by the shared cultures of different ethnic groups. Parents in different cultures demonstrate diverse psychological functioning when caring for a child with a chronic disability such as autistic disorder. Few investigations have been conducted in Bangladesh regarding the coping strategies used by parents of autistic children. Therefore, the purpose of this study was to examine the coping strategies of parents raising autistic children in Dhaka city. We also studied the relation between the coping strategies of parents with autistic children and the parents’ educational status. Materials and Methods: A total of 44 parents with autistic children participated in this survey and were randomly selected from a simple sample comprising parents of children attending special schools in Dhaka city, Bangladesh. Data were collected through questionnaires on coping strategies and were administered by an interviewer. A chi square test was conducted...
Coping in Parents and Caregivers of Children with Autism Spectrum Disorders (ASD): a Review
Review Journal of Autism and Developmental Disorders, 2014
Parents and caregivers of children with ASD have reported significant stress and challenges in caregiving. However, stress coping research in parents and caregivers of children remains limited. This review attempted to close this gap. For this review, 37 studies investigating the (1) underlying themes, (2) contributing factors, and (3) psychological outcomes of ASD-related parental and caregiver coping, were selected from the literature. Results revealed that the two most useful coping resources, i.e., problem-focused coping (45.9 %) and social support (37.8 %), were supported by parental stress coping studies. Parents' and caregivers' use of coping strategies was also influenced by (1) demographical characteristics (i.e., gender, age, education, income, language) and psychological attributes (i.e., personality, cultural values, optimism, sense of coherence, benefit-finding and sense-making abilities, emotional health, coping styles), (2) child characteristics (i.e., age, gender, medical conditions, cognitive and adaptive functioning abilities, language difficulties, and behavior problems) and (2) situational variables (i.e., treatment availability, family function, and clinician referrals to support resources). Finally, methodological limitations in past studies were discussed. This review emphasized the importance of further examination on the coping mechanisms of parents/caregivers of children with ASD.