How Autism Effect the Family and the Parents in Denial
Rosaline Nixon
RES 831 Foundations of Research Design 1
April 26, 2022
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Literature Review: Background to the Problem
. •There is a small population in the US living with autism
•Autism Spectrum disorder affects minority communities disproportionally compared to whites. There is lower accessibility of available services for ASD treatment across different ethnic communities
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According to the national state population-based estimates, there is a small population of individuals living with autism spectrum disorder (ASD). However, there is a lack of a monitoring system for the condition’s prevalence within the population. The estimates for Louisiana and Massachusetts include 1.97% and 2.42 respectively. Approximately 5,437,988 U.S. adults under 18 and above living with ASD in the U.S. However, most adults usually deny having autism hence affecting the treatment of the disease. An example is where mothers in Brazil have mixed reactions, including denial and acceptance, when taking care of children with autism. In addition, they are exposed to more sadness when learning how to take care of children with autism (Magalhaes et al., 2021). Disparities in service usage for autism spectrum disorder (ASD), including limited access and use, disproportionately affect racial and ethnic minority families (Angell, Empey, & Zuckerman, 2018). Latinos are the country’s largest racial and ethnic minority group and are predicted to continue expanding faster than other racial and ethnic groupings (U.S. Census Bureau, 2018). Latino families with autistic children continue to be underrepresented in autism research and underserved by an autism diagnosis and intervention programs (Angell et al., 2018). Latino children with ASD are identified later, get less specialized treatment services, and have worse unmet service requirements than White, United States-born children (Angell et al., 2018). These inequalities in ASD prevalence have continued over time and have occasionally been worse for Latino households than White, US-born families.
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Literature Review: Theoretical Foundations
Theoretical foundation
ABC-X Theory
A- Stressor event
B- Available resources for a family
C- Perception
X- Probability of an event occurring
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The ABC-X model is mainly applied in analyzing hardships encountered by families when trying to cope with stress. A represents the stressor event, while B represents available resources for a family. C finally represents the perception of a family towards a specific stressor, and X ultimately means the probability of an event occurring. Thus, the study variables to be used in the research as stressor event (A) include the presence of a family member with autism.
In contrast, therapeutic and other activities are commonly used among children with special needs, such as ABA therapy, as significant resources available for families will be used as B. The perception (C) will entail parents’ perception regarding the effectiveness of therapeutic approaches to addressing autism in children. The results will be the quality of marital relationships, financial stability, and parents’ mental health.
Research questions
What are the impacts of children living with autism on parents’ mental health?
What is the probability of parental denial of autism reduced through group-based therapeutic approaches?
What is the relationship between the health of the marital relationship and the presence of a family member with autism?
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Literature Review: Review of Literature
| Major Topic | Topic Description | Empirical Sources APA Formatted Reference |
| Impacts of social structures on parental denial | Identifies several social structures impacts, for example, religious views on beliefs regarding autism. | Faroooq and Ahmed (2020), Brewer (2018), Liao et al. (2019) |
| Impacts of autism on family | Identifies issues arising as a result of prevalence of autism at the family context | Magalhães et al. (2021), Pearson et al. (2020), Pozo et al., 2014) |
| Impact of culture on perceptions regarding autism | Identifies cultural view of autism and how it impacts perceptions of individuals. | Kang-Yo et al. (2018), Altiere (2009), Zuckerman (2014). |
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4
Problem Statement
Current research focused on sociocultural influences of autism on parental denial and family experiences.
It is not known determined whether there are any significant impacts of autism in families and parental denial
Based on what is known in the empirical research literature, specific impacts of autism and parental denial are still unknown or what still needs to be understood is the varying impacts of availability of resources,
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Based on the existing research, autism is directly related to the family’s issues and among parents. However, there is little collaborative research indicating the impact of autism on parents’ denial and the family members. Most studies have focused on the effects on parents’ mental health and financial stability instead of parents’ denial as the significant source of the issue. By investigating sociocultural factors that affect perceptions regarding autism, the research aims to increase awareness regarding adverse impacts on care for children.
Use this Slide for Quantitative Studies: Variables
| Variable | Conceptual Definition | Operational Definition | Measurement Level | Instrument/Data Source |
| Cultural beliefs | Belief in something based on ethnic traditions, values, and norms. | Mediating factors within the society that determine an individual’s decision regarding treatment and status | Enrollments of parents into Group based Acceptance Training Programs (ATP) | Engagement of parents in ATPs |
| Parental denial (dependent) | Refusal of parents to accept their children’s’ condition as autism | Impact of cultural factors on perception of parents about autism | Parental health seeking behaviors | National State population-based estimates of diagnosed autism patients |
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Use this Slide for Quantitative Studies: Research Questions and Hypotheses
RQ1: What is the impact of autism on family members
H10 Autism does not lead to adverse impacts on the relationships between family members
H1A Autism leads to adverse impacts on the relationships between family members
RQ2: What are the impacts of autism on parental denial of prevailing health conditions within their children?
H20 There is no significant correlation between sociocultural factors and parental denial of the status of their children
H2A There is a significant correlation between sociocultural factors and parental denial of the status of their children
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7
Methodology Justification
| Quantitative | |
| Seminal sources describing quantitative methodology: Sheard, J. (2018). Research methods. Routledge. Queirós et al., 2017 | Justification for quantitative: The fundamental techniques for analyzing numerical data are referred to as statistics. Statistical approaches are used to organize, analyze, interpret, and visualize numerical data. The fundamental techniques for analyzing numerical data are referred to as statistics. Statistical approaches are used to organize, analyze, interpret, and visualize numerical data. |
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In contrast to qualitative research, quantitative research deals with numerical data or data that may be translated into numbers. The fundamental techniques for analyzing numerical data are called statistics, and statistical approaches are used to organize, analyze, interpret, and visualize numerical data. Statistics is a vast subject having applications in a wide variety of disciplines, including information systems and other fields of information research. With the development of computers, particularly personal computers, access to statistical techniques for handling and analyzing data has increased.
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Feasibility – Slide 1
Resources for study:
Computer
Internet Connectivity
Institutional Review Board Approval
Ethical Concerns:
Privacy and confidentiality
Exclude identifying information during the data collection stage
Institutional Review Board (IRB) approval
Informed Consent
Provision of consent forms before research
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Slide Requirements:
Since the research will involve using empirical data evidence, there will be a need to obtain consent from the Institutional Review Board.
(IRB) to make sure that the research subjects are adequately protected throughout the research. However, additional research from secondary sources will be needed to support research findings obtained from credible sources such as google scholar and other PsycNET. These sources will facilitate the development of adequate background for conducting the research.
Ethical Concerns/Considerations
Ethical considerations for the research include the privacy and confidentiality of patients. The information provided by participants will eliminate identifying information such as names to reduce the risks of connecting participants to the research. In addition, there is also the issue of informed consent, where individuals will be presented with consent forms that explain the study, their roles, and rights during the research. Despite the various risks, the participants will gain by identifying evidence-based strategies for mitigating the prevalence of factors that lead parents into denial and mental health issues that might arise due to the presence of autistic children in parents and family in general.
Feasibility Concerns
Some of the most prevalent challenges likely to be encountered involve a lack of sufficient information from online sources and insufficient availability of resources for conducting the study. However, prior preparation will ensure all instruments and tools for the analysis. An example is obtaining IRB approval earlier to avoid delays. Based on the information collected, the study is feasible since it describes the underlying factors for parental denial of autism which is a significant determinant of health-seeking behaviors by the parents.
List of References
Altiere, M. J., & Von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual & Developmental Disability, 34(2), 142-152. https://doi.org/10.1080/13668250902845202
Angell, A. M., Empey, A., & Zuckerman, K. E. (2018). A review of diagnosis and service disparities among children with autism from racial and ethnic minority groups in the United States. International Review of Research in Developmental Disabilities, 145-180. https://doi.org/10.1016/bs.irrdd.2018.08.003
Brewer, A. (2018). “We were on our own”: Mothers’ experiences navigating the fragmented professional care system for autism. Social Science & Medicine, 215, 61-68. https://doi.org/10.1016/j.socscimed.2018.08.039
Farooq, A., & Ahmed, S. (2020). Sociocultural barriers to early diagnosis of autism spectrum disorder. Life and Science, 1(4), 6. https://doi.org/10.37185/lns.1.1.106
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Slide Requirements:
Include a fully APA 7.0 correctly formatted reference for each citation used in the preceding slides. Add List of References slide as needed so that ALL quotations in your presentation are listed.
Gordillo, M. L., Chu, A., & Long, K. (2020). Mothers’ adjustment to autism: Exploring the roles of autism knowledge and culture. Journal of Pediatric Psychology, 45(8), 877-886. https://doi.org/10.1093/jpepsy/jsaa044
Kang-Yi, C. D., Grinker, R. R., Beidas, R., Agha, A., Russell, R., Shah, S. B., Shea, K., & Mandell, D. S. (2018). Influence of community-level cultural beliefs about autism on families’ and professionals’ care for children. Transcultural Psychiatry, 55(5), 623-647. https://doi.org/10.1177/1363461518779831
Magalhães, J. M., Rodrigues, T. A., Neta, M. M., Damasceno, C. K., Sousa, K. H., & Arisawa, E. Â. (2021). Experiences of family members of children diagnosed with autism spectrum disorder. Revista Gaúcha de Enfermagem, 42. https://doi.org/10.1590/1983-1447.2021.20200437
Pozo, P., Sarriá, E., & Brioso, A. (2013). Family quality of life and psychological well-being in parents of children with autism spectrum disorders: A double ABCX model. Journal of Intellectual Disability Research, 58(5), 442-458. https://doi.org/10.1111/jir.12042
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Queirós, A., Faria, D., & Almeida, F. (2017). The fundamental techniques for analyzing numerical data are referred to as statistics.’ Statistical approaches are used to organize, analyze, interpret, and visualize numerical data. European Journal of Education Studies, 3(9). https://doi.org/ 10.5281/zenodo.887089
Sheard, J. (2018). Research methods. Routledge.
U.S. Census Bureau. (2018). Facts for features: Hispanic heritage month 2018. Census.gov. https://www.census.gov/newsroom/facts-for-features/2018/hispanic-heritage-month.html
Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental & Behavioral Pediatrics, 35(8), 522-532. https://doi.org/10.1097/dbp.0000000000000091
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