Lived Experiences of Mothers Raising Children with Autism in Chitwan District, Nepal.
TL;DR: In this article, the authors explored the lived experiences of mothers raising children with autism and found that mothers felt physically exhausted due to the continuous supervision of their child and emotional problems such as denial, upset/sadness, and worry were also common among them.
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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TL;DR: The needs and challenges mentioned by the parents of children with ASD highlighted the need for medical, educational, and counseling services and emotional and material support from the community and the government.
Abstract: Background: The circumstances and needs of children with autism spectrum disorder (ASD) affect children and their families. Objectives: This study aimed to explore the challenges and needs of parents caring for children with ASD. Methods: An exploratory qualitative method and the conventional content analysis method were employed in the present study. Participants were 18 parents with children with ASD in Tehran who were recruited by the accessible sampling method. To collect data, semi-structured, face-to-face, and in-depth interviews were used. The interviews were audio-recorded and transcribed verbatim into Microsoft Word software. Qualitative analysis was performed using the content analysis approach. Results: Parents had three main needs in caring for their children: (1) first, issues and problems related to diagnosis, treatment, and rehabilitation, including three categories (issues and problems of diagnosis and treatment, issues and problems of rehabilitation, and inadequate therapeutic support); (2) second, issues and problems related to parents, including four categories (parents’ lack of knowledge and awareness about ASD, lack of life skills, daily problems of parenting, and familial & marital issues); and (3) third, financial, cultural, and social issues, including two categories (financial problems and social & cultural problems). Conclusions: The needs and challenges mentioned by the parents of children with ASD highlighted the need for medical, educational, and counseling services and emotional and material support from the community and the government. Planning and implementing support programs enable parents to face problems strategically, which ultimately improves their quality of life.
TL;DR: In this paper , the authors examined gender effect that mothers are highly affected by Autism Children compared to Father and found that parents feel guilt, socially detached, embarrassed in public due to abnormal behavior of autistic children.
Abstract: : Autism is a Neurodevelopmental disorder that affects communication and behavior of children. Autism is known as “spectrum disorder” because there is wide variation in the type and severity of disorder (DSM-5). Nature of the research is Qualitative & consists of 25 studies. This study examined gender effect that Mothers are highly affected by Autism Children compared to Father. Purpose of the research was to examine the Quality of Life of Parents with Autism children. Studies revealed that Parent feel difficulty in daily living activities, restricted and repetitive behavior of autistic children, poor social interaction & communication. In addition, more studies investigated that neither parent had to face vocational loss, physical and psychological impairment, distorted social life but also had negative impact on siblings and entire family. Autism children suffers from high level of Depression, Anxiety and Stress. Most of the studies proved that Autism effects especially on mothers compared to father. Parents feel guilt, socially detached, embarrassed in public due to abnormal behavior of Autism children. Parent face financial loss & work decay due to expensive medical interventions. In contrast parent tries to cope up and adapt different coping techniques or skills to deal with Autism children and psychological distress.
TL;DR: In this article , a pre-experimental design, with one-group Pre-test-Post-test, was employed to develop a compassionate love parenting training program to reduce stress among children with special needs caregivers.
Abstract: Caregivers of children with special needs experience a high workload, which causes stress and low quality of life. A compassionate love attitude amongst caregivers is needed to improve the quality of parenting. This study aims to develop a compassionate love parenting training program to reduce stress among children with special needs caregivers. The method employed was Pre-experimental Design, with One-group Pre-test-Post-test. The research participants were 40 caregivers identified using the purposive sampling technique. In the pre-test, the stress level of the caregivers was measured using the Parental Stress Scale with 24 items (α = .828). The data were analyzed using the Wilcoxon test to observe the differences between the pre-test and post-test of two dependent samples. The results show that the stress score decreased significantly, with Z = -2.023 and with a significance level of .043 .05. It is demonstrated that regular training in compassionate love parenting reduced the stress felt by caregivers of children with special needs. The implementation of compassionate love parenting training in special needs therapeutic centers is important, as it is one of the intervention methods that has been proven to reduce the level of stress to optimize the growth of the child.
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TL;DR: In recent years, there has been an increase in submissions to the Journal that draw on qualitative research methods, and in-depth interviews in particular, there appear to be alot of questionnaires about ‘How large does my sample size have to be?'
Abstract: In recent years, there has been an increase in submissions to theJournal that draw on qualitative research methods. This increaseis welcome and indicates not only the interdisciplinarityembraced by the Journal(Zucker, 2002)butalsoits commitmenttoawidearrayofmethodologies.Forthosewhodoselectqualitativemethodsandusegroundedtheory and in-depth interviews in particular, there appear to be alotofquestionsthatauthorshav ehadrecentlyabouthowtowritea rigorous Method section. This topic will be addressed in a sub-sequentEditorial.Atthistime,however,themostcommonques-tion we receive is:‘‘How large does my sample size have to be?’’and hence I would like to take th is opportunity to answer thisquestionbydiscussingrelevantdebatesandthenthepolicyoftheArchivesofSexualBehavior.
920 citations
TL;DR: Children with special health care needs with autism spectrum disorder are significantly more likely to have problems regarding access to care and unmet needs, and their families have greater financial, employment, and time burdens compared with other children with specialhealth care needs.
Abstract: We sought to examine the health care experiences of children with autism spectrum disorder and the impact of autism spectrum disorder on the family and to assess whether having a medical home is associated with less family impact.
583 citations
TL;DR: In this article, the authors discuss the premise of hermeneutic phenomenology as a method for doing research and collect and exhibit a crude paradigmatic clue of doing a HERMENEUTIC phenomenological research.
Abstract: This write-up aims to first clarify the notion of phenomenology by offering sayings of different experts of this genre. Thereafter, it attempts to briefly trace its genesis and classify this broad idea in three different schools viz. transcendental, hermeneutic and existential. After discussing very precisely on each of these schools, it focuses on the premises of hermeneutic phenomenology as a method for doing research. The purpose of this essay is to collect and exhibit a crude paradigmatic clue of doing a hermeneutic phenomenological research. During the course, it emphasizes on the metaphysical stance, methodological grounds, quality concerns and ethical issues that contribute to its paradigmatic assumptions. Bodhi: An Interdisciplinary Journal, 5, 2011, Page 181-200 DOI: http://dx.doi.org/10.3126/bodhi.v5i1.8053
529 citations
TL;DR: The lifetime cost of autism spectrum disorders in the UK is estimated to be approximately £1.23 million, and for someone with ASD without intellectual disability is approximately £0.80 million, after discounting.
Abstract: Autism has lifetime consequences, with potentially a range of impacts on the health, wellbeing, social integration and quality of life of individuals and families. Many of those impacts are economic. This study estimated the costs of autism spectrum disorders (ASDs) in the UK. Data on prevalence, level of intellectual disability and place of residence were combined with average annual costs of services and support, together with the opportunity costs of lost productivity. The costs of supporting children with ASDs were estimated to be £2.7 billion each year. For adults, these costs amount to £25 billion each year. The lifetime cost, after discounting, for someone with ASD and intellectual disability is estimated at approximately £1.23 million, and for someone with ASD without intellectual disability is approximately £0.80 million.
343 citations
TL;DR: In comparison with a nationally representative sample of mothers of children without disabilities, mothers of adolescent and adult children with ASD spent significantly more time providing childcare and doing chores, and less time in leisure activities.
Abstract: In the present study, 96 co-residing mothers of adolescents and adults with an autism spectrum disorder (ASD) participated in an 8-day diary study and reported on their daily experiences. In comparison with a nationally representative sample of mothers of children without disabilities, mothers of adolescent and adult children with ASD spent significantly more time providing childcare and doing chores, and less time in leisure activities. Fatigue, arguments, avoided arguments, and stressful events were also more common among mothers of individuals with ASD. However, mothers of individuals with ASD reported similar levels of positive interactions and volunteerism as the comparison group. Daily experiences were subsequently related to well-being in both groups. These findings highlight the need for family support services.
267 citations