Chair Feedback (12-2-2022), thank you for your submission. There are a lot of issues with chapter 3 that needs to be resolved.
Stage One
Go through chapter 3 and add all of the missing material that I have identified. Then have an editor look at the written material and make the needed grammatical and APA adjustments. While there are several items that I have identified in your paper that must be done, I want to draw your attention to a few specific issues here:
Your sampling method needs to be purposeful. You need to identify and describe the specific selection criteria for participation.
The data collection and procedures followed need to be totally revised. Please look at the yellow highlights I included for guidance. Also, please make sure that the procedures followed are in numbered order and use clear language. There were a lot of items you mentioned like getting ethical approval, and I am not sure what that means. So be clear.
All of the items in the truthfulness section need to be described in terms of your study. For example, what will you do for member checking? How will you demonstrate evidence?
Challenges facing Black and Latino parents of Children with Autism Quality Care
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TABLE OF CONTENTS
Contents
CHAPTER ONE 3
1.0 Introduction 3
1.1 Background of the Study 4
1.2 Statement of Problem 8
1.3 Purpose of the Study 9
1.4 Research Questions 11
1.5 Significance of the Research 11
1.6 Definition of Terms 13
1.7 Assumptions, Limitations, and Delimitations 14
1.7.1 Assumptions 14
1.7.2Limitations of the study 14
1.7.3 Delimitations of the Study 15
1.8 Chapter Summary 15
CHAPTER TWO 17
2.0 LITERATURE REVIEW 17
2.1 Theoretical Framework 20
2.1.1Healthcare Utilization 22
2.1.2 Socio-Economic Factors 36
2.1.2 General Population 41
2.2 Chapter Summary 57
CHAPTER THREE 59
3.0 RESEARCH DESIGN AND METHODOLOGY 59
3.1 Qualitative, Descriptive Research Design 59
3.2 Research Question (s) 61
3.2.1 RQ 1 61
3.2.2 RQ 2 61
3.3Study Participants 61
3.4 Data Collection 62
3.4.1Procedure Followed 63
3.5 Data analysis 70
3.6 Summary 71
References 74
Appendix A 91
Participant Informed Consent Form 91
Appendix B 93
Sample Screening Document 93
Appendix C 94
Interview Guide 94
Appendix D 95
Semi-Structured Interview Questions 95
Appendix E 97
IRB Approval 97
Appendix F 98
Codebook 98
Appendix G 99
Transcript 99
CHAPTER ONE
Research by Knopf (2020) indicates that there has been an increase in the number of children with autism in American society. The problem of children with autism is especially severe among Latinos and African Americans due to their poor socioeconomic status and the social-cultural challenges that they face (Surmiak, 2018). It is often difficult for parents to get access to health information about prevention, treatment, and care (Smith-Young et al., 2020). Analysis of the social challenges facing Black and Latino parents of children with autism is an important subject. This study seeks to offer insights into the best models that are sustainable and applicable to the problems encountered while caring for children with Autism Spectrum Disorder (ASD). In this regard, this study will focus on the less privileged minority groups to improve the well-being of the parents and patients with ASD.
ASDis a prevalent developmental disability in children. It constitutes a wide range of conditions, and as a result, children may exhibit different autism subtypes presented as challenges in speech, non-verbal communication, and social skills (Knopf, 2020). The chances of occurrence and treatment options of ethnic minorities have limited access to this necessary information (Broder-Fingert et al., 2020). There has been a consistent racial disparity in the prevalence of people with ASD among different communities in the United States (Zerbo et al., 2019). This disparity is more noticeable when one compares the prevalence rates between Caucasians and other races due to the underlying gap in socioeconomic status relating to access to health coverage, information, education, and increased diagnosis. Latinos receive low-quality healthcare because one out of every 90 Latinos has ASD, making ASD a barrier (Angell et al., 2018). Given that differential autism rates may exist among Latinos and African Americans, parents with children with ASD encounter considerable challenges in their attempt to acquire the necessary quality of care for their kids. Fear and stigmatization from society may result in a few unreported cases of children living with ASD.
Latinos’ lack of immigration documents contributes negatively to enabling the parents to access quality healthcare in the United States (Rinehart et al., 2018). Most illegal and undocumented immigrants are likely to be of African origin or Latin America rather than from North America, Europe, or Asia (Camarota, 2018). Latinos and African Americans are reported to have imperfect access to health care due to poverty, stigmatization, and poor language proficiency (Smith-Young et al., 2020). Additionally, due to the lack of exposure to quality care, the parents have limited information about the disorder. Typically, parents are the primary caregivers of children with ASD. Therefore, depression, stress, and fatigue contribute to challenges to the parents in the quality of care that children with ASD get at home. The parent of children with ASD Disorder needs to understand to cope with the challenges of this condition when providing care for children with ASD.
Chapter One will begin by giving a background to the research topic, a statement of the problem, the importance of this research, its theoretical framework, research questions, research design, the definition of terms, as well as assumptions, limitations, and delimitations, before summarizing the whole chapter. The theoretical framework defines, discusses, and evaluates the models or theories relevant to this study’s research phenomenon. The research design is the strategy that the researcher will utilize in addressing the research question at hand. In other words, the blueprint outlines how the researcher will go about collecting and analyzing the data.
Background of the Study
American society continues to report increased cases of ASD (Angell et al., 2018). In the United States of America, 1 in 68 children under three years is diagnosed with the condition (Smith-Young et al., 2020). ASDis a prevalent growth disability among children (Centers for Disease Control and Prevention, 2020). Statistics indicate that the condition is more prevalent among Caucasians, with 1 in 63 children being diagnosed with the condition as opposed to 1 in 81 and 1 in 90 among Blacks and Latinos, respectively (Angell et al., 2018). Children may show varying autism subtypes, including challenges in speech and social skills or nonverbal communication (Tomchek et al., 2018). Racial difference in treatment is attributed to the healthcare market failure. As such, the market is characterized by institutional bias, preference for access to information, and challenging clinical encounters (Angell et al., 2018). Statistics reveal that more White autistic children have access to quality care than blacks and Latinos (Kapp, 2020). The gap in healthcare acquisition is due to each race’s varying social and economic status (Arnett, 2020). Health disparity is a particular health difference closely linked with social, economic, and environmental disadvantages (Angell et al., 2018).
Socioeconomic status underlies three significant determinants of health: health care, environmental exposure, and health behavior (Angell et al., 2018). In addition, chronic stress associated with lower socioeconomic may also increase morbidity and mortality. Reducing socioeconomic status disparities in health will require policy initiatives addressing the components of socioeconomic status (income, education, and occupation) as well as the pathways by which this affects health. Barriers to accessing health care are concentrated among individuals with poor socioeconomic status, such as Black and Latino families, which creates health inequality. However, many international organizations prioritize enhancing universal health coverage (Angell et al., 2018). Individuals with low socioeconomic status tend to have less comprehensive health insurance coverage. Additionally, socioeconomic status can significantly impact health outcomes, patient satisfaction, and physician perception of the care and treatment a patient needs.
It is also important to note that the lack of ASD among African Americans and Latinos creates a broader gap regarding prevalence compared to the white communities (Smith-Young et al., 2020). The problem is exacerbated by the low awareness of autism among Blacks and Latinos. The issues facing Latinos and African Americans in dealing with the condition include less access to health care, lack of knowledge, vulnerable immigration status, poor insurance models, language barriers, and cultural differences (Angell et al., 2018). Examining the attributes and perceptions of Latino and African American parents with ASD children enable the researcher to understand the possible challenges of accessing the needed quality care.
Developmental monitoring is observing how a child grows and changes over time and whether the child meets the typical developmental milestones in playing, learning, speaking, behaving, and moving (Bartlett et al., 2018). The initial diagnosis will help in starting the mitigation and treatment options at an early age. Early diagnosis is a vital practice in healthcare that should be developed by creating awareness of the existence of a disease and ensuring that society has an idea of what to do in case of similar symptoms (Ilias et al., 2018). Proper screening, evaluation, and diagnosis are also critical in ensuring that the child gets the best services and support that he/she needs. Why is it essential to get a diagnosis of autism? It is important to screen, evaluate and diagnose autism, as, without a diagnosis, this can make so many areas of life difficult, distressing, and bewildering for undiagnosed children. This can result in problematic behaviors, social isolation, and young people who do not attain their best in school.
ASD patients need to be treated by professionals since only professionals have the required expertise and knowledge of cognitive and behavioral patterns in ASD. Primarily, these autism treatments are critical in ensuring a child is diagnosed with the condition early and not confused with another mental disorder. Screening the child is also critical, as the child needs to be screened regularly from 18 months to 5 years for ASD(Smith-Young et al., 2020). Depending on the severity level, it is essential to ensure proper screening is conducted to help the child access adequate care and treatment options. An appropriate diagnosis of ASD is now possible through the DSM-V diagnostic tool (Naarden et al., 2021).
Economic costs are one of the parents’ main challenges in caring for a child with ASD. It costs a family $17,000 more per year to take care of a child with ASD compared to children without the condition (Smith-Young et al., 2020). Ordinarily, this is due to healthcare costs, education, therapy, family-coordinated services, and the caregiver’s time. The societal costs are estimated to be more than $11 billion across the US (Smith-Young et al., 2020). Parents require resources to help and care for their children since it takes a toll on the resources available to individuals. According to (Angell et al., 2018), they also must struggle with stress and other psychological problems since they must devise a method of taking care of the child. Parents may develop primary depressive conditions as they dedicate most of their time, energy, and resources to taking care of the child in the long run (Smith-Young et al., 2020). Therefore, it is essential to underline parents’ challenges in caring for children with autism to develop the best methods of mitigating the identified problems.
Doctors and nurses indicated some level of ignorance on the parent’s side among the Latino communities (Martin, 2018). Young et al. (2020) suggest that most parents cannot care for their children and may not visit health facilities for fear of stigmatization. Naarden et al. (2021) that out of parents with children grappling with ASD, only five understood how to deal with ASD. While much is known about autism, only a dearth of research studies addresses the enablers to parents whose children are affected by ASD.
Statement of Problem
Magaña et al. (2018) state that New York reported that Black and Latino parents are significantly less likely than white parents to experience the benefits of quality healthcare access for their ASD. Similarly, Donohue (2020) reported that race influences the ability of parents to report concerns about their children having symptoms of ASD, which makes early diagnosis challenging. Social determinants of healthcare, especially those relating to race, ethnicity, gender, geographic location, age, and income, hugely determine access to healthcare services. Even with the advancement in parent-focused and evidence-based parent-mediated interventions, most trials have been shunned for focusing on the white population (Iadarola., 2018). As such, the findings of healthcare biasness cannot be generalized to the American African and Latino populations with disparities and barriers to access to quality and timely ASD care, especially those in New York.
Healthcare barriers are heightened by limited proficiency in the English language, lack of access to information, and cultural practices, which are common among immigrant minorities (Tikhonov et al., 2019). Many of the studies focusing on the sentiments of parents with ASD children are from Western and white societies, as represented in past research. For instance, research records state that most of the documented parental experiences and child outcomes, including the barriers to treatment engagement, relate to upper and middle-class whites compared to the minority populations (Iadarola et al., 2018; Magaña et al., 2018). Therefore, there are significant barriers and experiences among whites compared to minority groups, inclusive Latinos and Black Americans.
There is a research and knowledge gap as regards the challenges that parents with ASD children who are Black and Latino face in New York. Therefore, the current study, underpinned by Andersen’s Behavioral Model of Healthcare Utilization/Use, will explore some of the challenges the African American and Latino parents of children with ASD face when accessing quality autism care. It looks to establish an understanding of the challenges that African American and Latino parents with children with ASD face regarding access to quality healthcare services in New York between 2015 and 2019. The study looks at some predisposing, enabling, and need factors determining the possibility of seeking healthcare and access to continuous healthcare services for ASD Disorder children.
Purpose of the Study
The purpose of this qualitative, descriptive research design aims to understand the unique systematic barriers that Latino and African American parents with children with ASD face and the perceived role that racial bias may play in accessing continuous, quality care for their autistic children in New York. Racial and ethnic minorities may face challenges accessing medical care in New York. When they receive it, their care may not be equivalent to that of other groups. Why this is so, however, is a complex issue involving not only differences in the ability to pay and provider behavior but also in such factors as patient preferences, differential treatment by providers, and geographical variability.
The theoretical framework guiding this study is Andersen’s Behavioral Model of Healthcare Utilization/Use model. Andersen’s Behavioral Model of Healthcare Utilization is widely accepted and used to study predictors of general health services utilization (Wammes et al., 2018).The behavioral Model was explicitly employed as the theoretical background for a broad range of health services sectors and diseases (Wammes et al., 2018). The variants of Andersen’s model have proven exceedingly versatile and have been successfully used to explain health services use among children with diseases such as autism. Various versions of the model, such as The Gelberg-Andersen Behavioral Model for Vulnerable Populations, suggest that health services use a function of predisposing characteristics (including gender, age, and health beliefs), enabling resources that facilitate access to health services (such as wealth, social support, or community characteristics) and, most importantly, health needs (Wammes et al., 2018). The research focuses on the predisposing, enabling, and need factors determining how African American Black and Latino parents with ASD children access and utilize healthcare services.
This study will fill the gap in research and relates to a heavy focus on the Caucasian population than the minority groups in the past study in the sense that the prevalence of ASD has been found not to differ across racial and ethnic groups (Obermeyer et al., 2018). Caucasian children and those of higher socioeconomic status are more likely to be identified and diagnosed with ASD. This is earlier than Black, Latino, and Asian children and children from low-income families (Kapp, 2020). As a result, Caucasian and lower-income children are less able to capitalize on early autism-specific intervention services during critical developmental windows when optimal neuroplasticity and synaptic proliferation occur (Zablotsky et al., 2020). Slade et al. (2018) noted racial, socio-economic, and geographical disparities as critical hindrances to access to quality and continuous autism care. Families with higher socioeconomic status will more likely have to identify ASD, while those from a lower socioeconomic status will have a delayed identification of the disorder and, consequently, late services (Nevison & Zahorodny, 2019)Zerbo et al., 2019). According to Daughrity (2019), due to a lack of networks among families from minority groups, and the confounding barriers to access to quality care, most parents of children with ASD face the challenge of accessing healthcare. Undoubtedly, parents’ challenges might increase stress in dealing with children with ASD.
Research Questions
In realizing its purpose of exploring the challenges facing Latino and African American parents to children with ASD as relates to access to quality care, twocritical questions will guide the scope of this research:
RQ1: How do Latino and African American parents of children with ASD describe unique systematic barriers they experience when accessing continuous, quality care for their autistic children?
RQ2: How do Latino and African American parents of children with ASD describe their perception of the role that racial bias may play in accessing continuous, quality care for their autistic children in New York?
Significance of the Research
The research is vital to scholars, parents, and caregivers because it fills significant gaps in information. Proper diagnosis and identification of the disorder may lead to improved long-term development and family outcomes (Centers for Disease Control and Prevention, 2020). On the other hand, delayed identification of the disorder has a detrimental effect on the child’s and family’s life. This study will provide critical information on how parental perceptions are a challenge in care for ASD children. The study will also address the facilitators of ASD children and show how empowerment and awareness lead to more health access (Braddock & Twyman, 2019). Latinos and Black children are diagnosed with two compared to Caucasian children (Centers for Disease Control and Prevention, 2018). The economic costs for all these diagnostic and treatment processes are a significant challenge for the Black and Latinos in society (Knopf, 2020). This study’s research findings will provide valuable information about the parental perceptions of the obstacles and enablers of children living with ASD. The researcher will seek to understand the factors that hinder access to health care and identify enablers that will offer solutions to the situation. Besides the obstacles, the study shall focus on the facilitators of the children living with ASD. The need for a better understanding of available support structures that can help minority group’s access empowerment and awareness services has also been underlined as essential to the needed changes.
The focus of this research on the behavioral model is on the factors that facilitate or impede an individual’s access to healthcare services. According to the research, access is determined by contextual characteristics, individual characteristics, health behaviors, and outcomes. Contextual characteristics include circumstances and the environment; individual characteristics are determined by a person’s life circumstances, including, for example, genetics and socialization; health behaviors are an individual’s practices, and outcomes are reflected by an individual’s health status and consumer satisfaction.
The Behavioral Model of Health Services is applied in this research to analyze healthcare access and utilization. The model differentiates predisposing, need, and enabling factors on the contextual and individual levels as determinants of individual health service use. The study will strengthen the Behavioral Model of Healthcare capabilities to systematize and empiricism equity and inequity in accessing continuous, quality care for autistic children in New York by specifying the need versus enabling and predisposing factors. The behavioral model is usually applied in general healthcare (quantitative studies). However, it excludes (qualitative studies) specific targeted groups, and studies that focus on specific diseases like ASD (Flick et al., 2019). The research aims to develop a qualitative application of the Behavioral Model of Healthcare and will advance its application for qualitative research.
Definition of Terms
Autism Spectrum Disorder (ASD): A developmental disability that is caused by differences in how the brain functions, which may be in communication, learning, behavior, and other different ways than the typical behavioral pattern (Centers for Disease Control and Prevention, 2020).
Diagnosis: is the identification of the illness’ nature (Centers for Disease Control and Prevention, 2020).
Educational outreach: essential activities that help inform classroom-based or informal education (Centers for Disease Control and Prevention, 2020).
Stigmatization- unfair treatment of others for their condition (Centers for Disease Control and Prevention, 2020).
Minority groups: A small group of people who, because of their number and other characteristics, are singled out from the rest of the society where they live for differential and unequal treatment. For this study, the minority groups are African Americans and Latinos (Centers for Disease Control and Prevention, 2020).
Racial Bias: Racial segregation and the systematic barriers to a Service (Maina et al., 2018)
Screening: The investigation of something, which assesses the suitability of an individual, attributes for a specific purpose or role in society (Centers for Disease Control and Prevention, 2020).
Assumptions, Limitations, and Delimitations
Assumptions are those things we take for granted in the study: statements by the researcher that some aspects of the research are understood to be true (Simon, 2011). The following assumptions have been identified for this study:
Assumption One: It is assumed that the participants of this study will have explicit knowledge of the challenges facing the parents of children with ASD within society. Thus, they will answer truthfully the questions asked by the researcher.
Assumption Two: It is assumed that this study will capture multiple perspectives from the study’s participants. This means that the researcher hopes that through this research, a diversity of points of view will be gathered to form a more comprehensive understanding of the problem.
Assumption Three: It is assumed that the participant’s responses will be honest and free of bias. Limitations of the study
Limitations are what the researcher cannot control. In other words, they are elements outside of the researcher’s control (Theofanidis & Fountouki, 2018). The following limitations have been identified)
Limitation One: The first limitation is sample recruitment. A small convenience sample will be recruited using social media platforms. The findings will increase ASD awareness in New York and beyond. Research results according to Creswell and Poth (2021), the data collected from a survey may be inconsistent because of the variability/dynamic/sudden occurrence of the observed phenomenon.
Limitation Two: The second limitation is that the study participants will self-report their experiences regarding access to continuous quality care and may selectively remember or forget the experiences; therefore, the researcher will presume the participants to be truthful in telling their experiences. Typically, the respondents may have their agendas that they would like to push in replying to the questionnaire. Thus, the researcher may not capture the real sense of the studied phenomena. According to (Creswell & Poth, 2021), a good survey may work in one culture but fail to be relevant in another.
Delimitations of the Study
Delimitations refer to the boundaries of the research study based on the researcher’s decision of what to include and exclude (Theofanidis & Fountouki, 2018). Delimitations narrow your study to make it more manageable and relevant to what you are trying to prove. They are what the researcher will not do (elements outside of the boundaries they have set).
Delimitation One: The small sample of participants may not represent all Latino and African American parents with children with ASD; hence, the findings may not be generalizable to all Latinos and African Americans with ASD.
Delimitation Two: Much of the delimitations will surround the study’s boundaries regarding the subjects, location, methods, period, and issues included and excluded. The study takes place in an expansive city; thus, time is a delimitation. On matters dealing with the subjects, the focus is on Black and Latino families, leaving out many other disadvantaged ethnic/racial groups facing the same problems.
Chapter Summary
This research will address the gap in knowledge and analysis of the challenges that Latino and Black American parents with ASD children face, with a specific focus on New York. It is now apparent that despite previous research on challenges faced by parents with ASD children, more attention was on White parents and less on Latinos, Black Americans, and other minority group’s parents with ASD children. Most of the previous studies have also been conducted in different settings other than the healthcare facilities in New York. This research fills the literature gap by exhaustively examining the predisposing, enabling, and need factors determining the access and utilization of quality and continuous ASD care services/facilities. As reported in secondary literature, parents with ASD children often face many barriers that deprive them of the benefit of getting better and timely care for their children. The disparities between Whites and minority groups regarding access to quality healthcare are well documented (Siller et al., 2018). Primarily delayed screening and diagnosis threaten the new management approach (Smith & Loxton, 2018). Therefore, there is a need to understand further the intricacies surrounding access to healthcare by Latino and Black American parents with ASD children.
The proposed study will use a qualitative approach. The researcher will administer interviews and use observation to collect and build up data for the study in pediatric hospitals and related healthcare facilities in New York. It is agreeable that some critical methods, such as educational outreach, de-stigmatization of ASD, providing additional support, improved awareness, and streamlining the ASDr diagnosis process in society, could bring change to the disparity currently reported by research. Healthcare institutions must deal with the parents’ needs and ensure that every child is given the required level of treatment. The current statistics indicate that Blacks and Latinos with ASD are at huge developmental risks if proper methods and policies are not implemented in society. Chapter 2 will review current and past research as regards access to healthcare and quality care services by parents. The chapter highlights the literature search strategy used to achieve the threshold of articles to include in the literature review; it also addresses various thematic areas relevant to the current study to help delve deeper and identify the gap in research.
CHAPTER TWO
LITERATURE REVIEW
The current chapter reviews the trends and the difference in healthcare access and utilization among different ethnic groups among parents with ASD children. The chapter will discuss how healthcare utilization differs across different ethnicities. That will provide a backdrop for discussing healthcare workshops as an enabler to improve the use of healthcare services. Diverse populations in the US experience unique barriers to the utilization of healthcare services. Minority groups face these challenges in an even more pronounced way. Understanding the dynamics of autism is crucial as it has a significant impact on a person’s life. It is, therefore, essential to understanding the factors that hinder the utilization of healthcare services for children with autism and possible solutions that can be employed to overcome these barriers.
The search strategy for finding articles, books, and other sources on how knowledge factors into the utilization of healthcare services included a simple web search on EBSCO Hoste topic’s keywords. This search strategy used several keywords: “autism” or “autism spectrum disorders,” “autism” and “statistics, utilization/use” and “quality healthcare services,” “autism” and “African Americans,” “autism” and “Hispanics,” “autism” and “Whites,” “autism” and “Latinos,” enablers and healthcare/tools and health outcomes/assistants and health outcomes, challenges, and quality healthcare services/healthcare outcomes, theories, knowledge sharing, and workshops, knowledge sharing, and healthcare professionals, and workshops, healthcare professionals and healthcare utilization. That generated several results, including peer-reviewed articles with relevant content. A search on EBSCO Host using the exact keywords also filtered several results to include only books and peer-reviewed articles on the topic. A search through the digital repository and online library, Journal Storage, also helped generate several sources with relevant content used to write this section. Face-to-face interaction with experts on the topic also helped identify the bearing the study should take, and it helped identify content for inclusion in this section and other sections of this work.
This chapter used sources published within the last five years. However, some seminal references published within the timeframe of the previous ten years fit as essential for inclusion in the chapter. Identifying original studies and writings of theorists included noting the frequency with which later studies, ideally those published within the previous three years, have referred to these studies by either confirming their findings or showing how the following results deviate from them. The current study will fill the gap in investigating how knowledge sharing in workshops can be employed as an enabler to improve the utilization of healthcare services for Black and Latino children with autism.
The researcher focused on the sources with information on the utilization of healthcare services for Black and Latino parents of children with autism to ensure that only relevant literature was featured in the current study. For comparison, the current study included references with details on the use of healthcare services for general population parents of children with autism, expecting to find a sharp contrast. The theoretical framework of the chapter includes sources on how ethnicity is associated with autism and the predisposition of minority groups, including the Black, Latino, Filipino, and Vietnamese population (Angell et al., 2018). Including recent and seminal sources ensured that the chapter presents a clear picture of the current literature on autism among minority groups, particularly Blacks and Latinos. However, it is imperative to start with a view of healthcare utilization, its meaning, and its importance.
A considerable proportion of the US population suffers from some form of disability, which calls for a healthcare system that caters to the needs of this population. About 26% of the US population comprises persons with disabilities (Houtenville et al., 2021). One such disability that continues to trouble the US population is ASD. Over one percent of children in the US are affected by ASD, which might continue to rise in the future (Davies & Rizk, 2018). Smith-Young et al. (2020) reported that the prevalence of ASD among American children under three years is one in 68 children. The prevalence of v is also worrying among Blacks and Latinos, with these populations recording an ASD prevalence of one in 81 children for Blacks and one in 90 children for Latinos (Smith-Young et al., 2020). A recent epidemiologic study by (Baio et al., 2018) reported that the prevalence of ASD is 1 in 59, which signifies an increase in the number of affected children.
Fundamentally, ASD prevalence indicates the need for further investigation of ways of managing autism because it affects many people. The current research focuses specifically on knowledge sharing in workshops as a social enabler that can apply to improve the utilization of healthcare services for minority group parents of children with autism. In the current study, knowledge sharing refers to the interaction of parents through the exchange of information on autism in workshops. Parents come together in workshops and share their experiences with children with autism. Workshops in this study are social support groups where parents interact to help each other with their everyday health issues.
This chapter outlines the theories associated with the diagnosis of autism. There is also a review of the state of the literature on autism for the general American population, how Black and Latino parents of children with autism utilize healthcare services, and knowledge sharing in workshops as an enabler to improved utilization of healthcare services among Black and Latino children with autism. The research questions that define the parameters of this chapter include: What limits the use of healthcare services for Black and Latino children with ASD? How can knowledge sharing in workshops improve the utilization of healthcare services for Black and Latino children with ASD? The chapter will show that social and economic enablers can be employed to enhance healthcare services for Black and Latino parents with children with autism (Camm-Crosbie et al., 2018). Accordingly, an effective literature strategy was necessary to find the most relevant and helpful literature to answer the above research question.
Theoretical Framework
The study uses the theory of the impact of cultural capital on the involvement of parents and the Critical Social Theory to examine the existing disparities in accessing continuous quality care for Latino and African American parents with ASD children. The two theories support and affirm the present study by differentiating equitable from inequitable healthcare access. The study is underpinned by Andersen’s Behavioral Model of Health Care Use. The identified challenges can be assessed using the model’s three components: needs factors, enabling factors, and predisposing factors.
Notably, Black, and Latino parents have significant challenges caring for children with ASD. Historically, the Centers for Disease Control has been following the progression of the prevalence of ASD and reported that the frequency of ASD among Latinos and Black people has increased due to a lack of access to quality healthcare (Knopf, 2020). Therefore, the impact of cultural capital on the involvement of parents is the theoretical framework that befits an investigation of the perceptions of Black and Latino parents regarding their children with autism (Davies & Rizk, 2018). This study examines the challenges Latino, and Black American parents with ASD children face regarding access to continuous and quality healthcare services.
The Behavioral Model of Health Care Use by Baweja et al. (2022) underpins this research. The model has a widespread appreciation and uses in the realm of public health. It posits that the predisposing factors, enabling factors, and need elements unify to predict access to healthcare and inclusive quality. In this model, the predisposing factors include demographic characteristics such as age and sex; social factors such as education, occupation, social relationships, and ethnicity; and mental health factors such as attitudes, perceptions, beliefs, knowledge, and values relating to mental health services (Tesfaye & Loxton, 2018). This study’s predisposing factors include race, ethnicity, parent education, income level, family structure, age, sex, and parents’ perceptions. The enabling factors include financing and organizational factors, which hugely determine the utilization of services.
At an individual level, the factors include wealth, income, insurance, and other enablers for access to care. Organizational factors include waiting times, location, distribution, and personnel availability. In the proposed study, the enabling factors include family insurance, wealth, income, level of parents/family, and whether the child is insured. Finally, the need factors include the perception of individuals on the need for health services and experiences of general health. Research shows that autism is a family stressor, forcing parents to construct new identities as parents of children with ASD. Cultural capital is about the depth and breadth of an individual’s cultural, social, and material resources, which includes Latino and Black parents’ knowledge regarding their children, cultures, and community resources (Davies & Rizk, 2018). The more resources these parents can have, the additional cultural capital they possess, and the more resources they can use.
In the proposed study, the need factors include the severity of the disability of the children, the need for parents to access ASD care facilities, and the level of need for care for the ASD children. The model is justifiable, as it has been successfully executed in studies (Timberlake & Swaine, 2020). The existing gap in literature backed by the above theoretical framework supports the aim/purpose of this study and informs the research questions.
Healthcare Utilization
Healthcare utilization refers to the use of healthcare services for curing and preventing health problems, promoting the maintenance of health and well-being, and getting information about one’s health status and prognosis (Lemmers et al., 2019). Adam and Awunor (2020) note that “good utilization of health services improves the health status of the population” (p. 117). That means that populations that do not fully use healthcare services for curing, preventing, or promoting their good health have poor health status. This argument is supported by (Tomchek, 2019), who stated that “utilization of healthcare services is an important determinant of health and has particular relevance as a public health and development issue in low-income countries” (p. 25). Thus, a country needs to ensure that low-income populations utilize healthcare for the entire country to be considered of functional health status. Historically, healthcare utilization is not regarded as necessary, but as people grow and the need for healthcare increases, there has also been an increase in the demand for good healthcare utilization.
The National Academies of Sciences, Engineering, and Medicine (2018) holds that healthcare utilization “is determined by the need for care, by whether people know that they need care, by whether they want to obtain care, and by whether care can be accessed” (p. 6). That means that healthcare utilization is not only about using healthcare facilities but also having knowledge about the care they need and whether they need healthcare in the first place. However, there are some barriers to healthcare utilization, such as minority status. According to (Alegria et al., 2019), minorities are a small group of people compared to most groups comprising a population, and they may include people living in rural areas, immigrants, uninsured people, and people living with a disability. In the USA, minority groups include Hispanics and Blacks, among others.
In the current study, healthcare utilization will refer to the visit to a healthcare facility, hospital, doctor’s office, or other official location. According to (Lemmers et al., 2019), healthcare utilization refers to “the quantification or description of the use of services by persons to prevent and cure health problems, promoting maintenance of health and well-being, or obtaining information about one’s health status and prognosis” (1). Thus, a person visiting dentistry, a psychotherapy healthcare facility, or an official office, for instance, can be regarded as a healthcare utilization because it amounts to using healthcare services to prevent or cure health problems. However, some community groups are less privileged, which influences their healthcare utilization, such as financial constraints like lack of insurance and social issues like stigma and stereotypes.
To respond to the purpose of this paper, which is to study, which is to explore the challenges that parents with autistic children face, the current study will focus on hospital visits by children with autism (accompanied by their parents or guardians) for the diagnosis or subsequent placement of the child in a treatment plan for autism. Existing studies on healthcare utilization have focused on the impact of various factors, including financial problems (Płatos & Pisula, 2019) and social issues like discrimination (Bilaver & Havlicek, 2019.) Very few, if any, studies have been done to determine the utilization of healthcare among minority groups comprising blacks and Latinos with children with autism. Specifically, the literature on how knowledge sharing can affect minority groups is non-existent; hence, the current study seeks to investigate, through workshop projects, how Black and Latino minority groups can benefit from sharing knowledge about healthcare utilization.
Factors Affecting Healthcare Utilization
Health Condition: Autism
Even when the healthcare system meets the immediate healthcare needs of children with autism, many related needs of these children remain unmet. Children diagnosed with autism have a high rate of utilization of healthcare services, but still, many of their needs go unmet (Zablotsky et al., 2020; Płatos & Pisula, 2019; Slade et al., 2018). Factors that can lead to unmet healthcare needs include low family income levels, inconsistent healthcare insurance coverage, and lack of coordination among different therapeutic services (Litt & McCormick, 2020). Some of these needs, such as behavioral therapy, may go unmet because care providers underestimate the concerns of parents of children with autism (Slade et al., 2018).
Research shows that the increased cost of healthcare has not produced a corresponding increase in the quality of care (Rowe et al., 2018). The discordance between prices and the quality of care is evidence of the inefficiency of the healthcare system. Such shortcomings in the healthcare system can hurt the patterns of utilization of healthcare services among parents of children with autism (Litt & McCormick, 2020). Knowledge sharing between parents of children with autism may help improve the utilization of healthcare services. As parents share ideas on how healthcare professionals can improve these services, informed parents educate other parents on the importance of using available healthcare services.
Diagnosis of Autism
The manifestation of ASD can be either delays or deficits. Delays are found within the domain of fine motor and gross motor skills, whereas gaps occur within the areas of gait, coordination, and praxis (Hedgecock et al., 2018). The deficits and the delays affect the behavioral and cognitive domains, but with early intervention, the individual with autism stands a better chance of improvement (Hedgecock et al., 2018). Motor functioning plays a critical role in the broader aspects of development, such as learning, social interaction, and language development. Identifying abnormalities in the motor domain early facilitates interventions that could improve behavioral and functional outcomes (Hedgecock et al., 2018). Research shows that early motor imitation and oral-motor skills predict language acquisition in children with ASD (Wilson et al., 2018). Consequently, early detection of deficits in the motor domain has excellent clinical relevance (Hedgecock et al., 2018); hence, the relevance of early intervention.
Early diagnosis of autism is beneficial to the child because it helps the child stands a better chance of coping by being placed in early intervention programs. Evidence suggests that autism has genetic causes (Hedgecock et al., 2018). However, the characteristics of autism include impaired social interaction, communication and repetitive and restricted interests and behaviors (Wilson et al., 2018). Therefore, the diagnosis of autism depends on the child’s behavioral manifestation. The average age of diagnosis of autism is above three years (Hedgecock et al., 2018), but the American Academy of Pediatrics recommendation is between 18 and 24 months (Wilson et al., 2018). This recommendation for early diagnosis is evidence that early diagnosis is essential.
Early diagnosis of autism allows guardians of the child to take the necessary measures to improve the child’s life. When parents are informed about autism, they can take the required educational and behavioral steps to enhance the experience of the child with autism. The parents or guardians of the child can also share information about the cognitive challenges of the child with other relevant persons, such as preschool staff who come into regular contact with the child (Lim et al., 2021). The diagnostic category of children with atypical autism or pervasive developmental disorder has changed (Hedgecock et al., 2018). That shows the importance of reassessments and clinical follow-ups of children diagnosed with autism, especially if the autism diagnosis of the child was during their pre-school years (Hedgecock et al., 2018). Successful early intervention results in improved communication, and social function, minimized obsessive and repetitive behaviors, and improved cognitive abilities (Hedgecock et al., 2018). Existing theories can help understand autism better, such as the importance of early intervention and effective health care utilization for autistic children, hence the next section.
Theories on the Diagnosis of Autism
Although theorists do not differ on the characteristics and symptoms of autism, they do differ on how these characteristics should be perceived. As defined by (Meltzer, 2018), autism is a childhood syndrome characterized by problems in communication, obsession with routine, and ‘autistic aloneness.’ Hans Asperger differentiated Asperger’s Syndrome from ‘classic’ autism. Children diagnosed with Asperger’s Syndrome have no symptoms of intellectual deficiency or language delay (Farrugia, 2018). Wing (2018), developed the autism spectrum by putting into consideration these two extremes.
Some theorists contend that autism is an abnormality, backing their claim with the diagnostic defects associated with the condition, which include impairment in imaginative abilities and social and communicative skills. Approximately 75% of those diagnosed with autism have limited intellectual abilities (Wing, 2018), which justifies the categorization of autism as a disorder. In contrast, the intelligence quotient of the remaining percentage ranges from average to good (Thurm, 2019). Children diagnosed with ASD also have symptoms of sensory difficulties connected to general sensory dysphoria (Özyurt & Eliküçük, 2018). How people perceive autism is important because it influences their healthcare-seeking behavior. This understanding of the diverse nature of different people’s levels of sensory difficulty is known as neurodiversity.
Theorists who subscribe to the “neurodiversity” movement hold an opposing view of autism compared to those who view it as a condition that needs remedy (Singer, 2019, p 13). Singer contends that neurodiversity is only an additional political category, like the types of races, gender, or class (Acevedo & Nusbaum, 2020). Neurodiversity is a broad concept that categorizes autism and other neurological developments that deviate from the norm as distinctions that should be tolerated and respected rather than treated (Kapp, 2020). The theorists who subscribe to this thought propose that neurological differences are not a handicap or pathology but rather a human variation like any other (Chapman, 2020). Theorists who subscribe to neurodiversity are opposed to the description “people with autism” because this suggests autism is a condition masking their authentic selves. Advocates of neurodiversity might argue that if autism is normalized, then children with ASD would not need treatment to fit into the rest of society.
Despite the disparate perception of autism, it is evident that people who experience this condition need some intervention. Even in the case of high-functioning autism, individuals have a different experience of reality as compared to individuals who do not have this condition (Kapp, 2020). The fact that disease has labels means people defined by this label are likely to feel stigmatized. Primarily, such occurrences might interfere with how they seek help. It is essential to identify ways of helping such people to improve their health outcomes, social interactions, and, consequently, their quality of life. This stigmatization of autism has undergone numerous investigations since the mid-20th century.
Theories developed in the 1940s to explain the causes of autism speculated that the condition was associated with emotionally frigid mothers who were labeled “refrigerator mothers” (Prooijen & Douglas, 2018, p.8). However, later research debunked this association between autism and parenting (Farrugia, 2018). Biological, neurological, and psychological theorists who subscribe to the proposition that children diagnosed with autism experience some limitations not experienced by children not diagnosed with this condition agree that there is something wrong with children with autism, and this condition needs remedy. This perception influences how parents view their children with autism, and this perspective is associated with stigma (Waizbard-Bartov et al.,2018). Efforts to improve the experience of children and their families must start by dealing with such perceptions about the condition. It is vital to create awareness, not just about identifying symptoms of autism but also about how to respond to them appropriately.
The categorization described here can deduce at least two views. The first view is that autism is treatable as a natural variation (at least high-functioning autism) rather than a pathology that needs treatment. That is the view held by theorists who subscribe to the “neurodiversity” movement (Waizbard-Bartov et al.,2018, p.37). This view is consistent with the prescription that autism should be conferred value for treatment as natural and valuable (Jaarsma & Welin, 2022). The opposing view is that autism is an abnormality that requires therapeutic intervention. It is important to note that the label attached to the condition can cause stigmatization for people defined by it. That can interfere with how these people utilize healthcare services even when they are readily available and accessible. As long as autism is not normalized and society functions based on the neurotypical norm, children with autism will need services to help them fit into society. The current study focuses on knowledge sharing in workshops as a social enabler that can be employed to improve the utilization of healthcare services for families of children with autism. Patients will be better informed on the importance of seeking healthcare services, which will increase the use of these healthcare services.
Minority Groups
Different populations have varied experiences with the healthcare system and have different needs that may be unique to their community. For example, Black American and Latino parents face unique challenges with the healthcare system. Therefore, various stakeholders who set out to improve the healthcare system to improve the utilization of healthcare services need to understand the unique experiences of different communities within the healthcare system. The current study seeks to present the unique experience of Black and Latino communities with the healthcare system to create a context for improving the utilization of healthcare services among these communities.
According to (Ma et al. (2019), other secondary ethnicity factors that limit the utilization of healthcare services among Black people and minority ethnic communities include long waiting times during the initial assessment session, inadequate response to patient health needs, cultural insensitivity, naivety, and discrimination towards Blacks and other minority communities. A barrier to healthcare utilization is their mistrust of healthcare providers. The lack of trust in healthcare providers for Black people makes them reluctant to seek care services. The current study investigates how knowledge sharing in workshops can improve healthcare service utilization among Black people and Latinos. Interaction between parents of children with autism can help reduce the mistrust among parents. It can also help improve cultural sensitivity among healthcare providers so that they respond to the health needs of these populations.
Black people as a minority group
Black people in the US, also known as people of color or African Americans, are people of African descent who migrated to the USA during the slave-trade era. Over the years since coming to America, Black people have been considered a minority race. Consequently, they have suffered racial discrimination, among other repercussions of being a minority race, including segregation and lack of or low access to public amenities and services. According to a recent study by the University of Minnesota (2019), Black people bear a more substantial health burden than majority groups, such as Whites. Thus, it is imperative to determine the steps to improve the situation for Black people significantly when raising children with autism. The researcher of the current study presumes that knowledge sharing in a workshop could expose parents of children with autism to the critical information they could use to improve the outcomes for their children. It is also essential to perform the same study on other minority groups, such as Latinos, who share similar characteristics with Black people.
Latinos
Latinos in the US mainly comprise people who migrated from Mexico and other Latin American countries. A 2016 study shows that Latinos comprise 11% of the US population, which is relatively low. Like their Black counterparts, Latinos have also experienced inequality problems while living in a White-majority nation. Latino people experience inequality in healthcare because most suffer from poor socioeconomic factors, such as few friends to socialize with and lack of insurance. That translates that their utilization of healthcare services is also negatively affected, which leads to the purpose of the current study, which is to investigate the impact of knowledge sharing among Latino parents with autistic children but also how the diagnosis and treatment of autism differ across different marginalized ethnicities.
Differential Diagnosis of Autism Based on Ethnicity
Ethnicity serves as a factor for differential diagnosis of Autism. The highest prevalence of autism occurs among non-Hispanic white children. Non-Hispanic White children were 30% more likely to be identified as having ASD than were non-Hispanic black children and 50% more likely than Hispanic children (Autism and Developmental Disabilities, 2014). The prevalence among Black/African American children and Hispanic is lower (Autism and Developmental Disabilities, 2014). As of 2019, the most reliable current data, even from the CDC (Centers for Disease Control), is from 2014. As reported by the CDC, as of 2014, the prevalence of autism among Whites was 1.1 times higher than among Black people. When compared to Hispanics, Whites had a 1.2 ta times higher prevalence (CDC, 2019). According to the report by the CDC (2019), effective outreach directed toward minority communities might explain the low incidence among Blacks and Hispanics. African American and Hispanic children have more comorbid delays in expressive language and intellectual disability (Autism and Developmental Disabilities, 2014). This prevailing health condition of these populations is evidence of the importance of utilizing healthcare services to improve the situation. Thus, it is crucial to study the issue of ethnicity and how it impacts healthcare utilization.
The nativity of the mother serves as a risk factor for child motherhood autism. Houtenville et al. (2021) observed that the risk factor of severe autism phenotype is higher for children of foreign-born Filipino, Black, Hispanic, US-born African Americans, Central/South American, and Vietnamese than children born of US-born mothers. (Baweja 2022) associated the diagnosis and severity of autism in children with maternal race/ethnicity and maternal nativity. Compared to the general population of children who belong to, say, the Caucasian community, which shows how important it is to study these minority groups since they are at a disadvantage based on their race.
For the current study, individuals who fit in the category of a minority group are Black and Latino families. The children are those who are twelve years and below and diagnosed with the condition of autism. Treatment will be interpreted as the prescription of drugs or placement in a therapy program in response to the child’s diagnosis. The term healthcare utilization will be used interchangeably with healthcare use in this study. Healthcare utilization differs across different ethnic groups. When compared to non-Latino whites, Latinos in the United States have a lower rate of usage of healthcare services (Özyurt & Eliküçük, 2018). According to the journal by (Langellier et al., 2019), Latinos visit healthcare facilities fewer times to receive preventive care and other healthcare services. They are also less likely to visit healthcare facilities for medical check-ups or have a designated pediatrician to cater to the needs of their children. Latinos are most likely to use the emergency room as the primary source of healthcare services (Langellier et al., 2019). Ordinarily, this indicates that healthcare utilization among Latinos is poor compared to other ethnic groups in the US.
As reported by (Singh et al., 2018), although ethnicity is a factor that influences healthcare utilization, there are more immediate social determinants, including income, education, transportation, and social and welfare services. In a study comparing the utilization of healthcare services in the United States and Canada, healthcare services are lower in the US among foreign-born individuals, low-income earners, and the less educated. Since a significant population of Latinos and Black people falls under one of these categories, there is a substantial difference between the utilization of healthcare services among these ethnic groups compared to whites (Pylypchuk & Sarpong, 2018). It is, however, essential to note that this difference in utilization stated here is not a consequence of ethnicity. Instead, it is a result of the difference in the economic status of the individuals identifying with these ethnicities.
The difference in utilization of healthcare services when comparing Whites to Blacks and Latinos is significant where the visits to healthcare facilities are significantly expensive, for example, where one needs to see a specialist or use a medical doctor as a regular source of care (Pylypchuk & Sarpong, 2018). That is relevant to the current study because the diagnosis and subsequent treatment of autism require a specialist. Besides, changing the medical doctor during the following appointments after the diagnosis of autism has been cited as a barrier to the increased utilization of healthcare services (Slade et al., 2018). This researcher discusses how this difference in the use of healthcare services can be reduced through knowledge sharing in workshops.
Symptoms of autism might be interpreted differently depending on socio-cultural differences. Parents have different conceptions of the abnormal development of their children, so they might not find it essential to disclose some information to healthcare providers. That can easily result in misdiagnosis or a lack of diagnosis, and such children might not receive the care they need (Meltzer, 2018). Knowledge sharing in workshops between parents of children with autism and healthcare providers, as presented in the current study, may help improve the utilization of healthcare services for Black and Latino children with autism by improving the knowledge of both parents and healthcare providers. For parents, knowing the symptoms to spot to take their children for diagnosis can help improve early diagnosis of autism. Parents also get to know the signs to disclose to healthcare providers for an accurate diagnosis. The same is essential for healthcare providers.
Healthcare providers get to know the differences in how communities or ethnic groups interpret symptoms of autism. This way, they become better equipped when diagnosing children for autism because they know what questions to ask. That, in turn, informs parents’ decisions on the healthcare services they need to seek and utilize. Knowledge sharing is vital for parents because low education is a barrier to the utilization of healthcare services (Singh et al., 2018). Knowledge sharing is also vital for healthcare users because the difference in the presentation of symptoms is a barrier to correct diagnosis (Magaña & Smith, 2018). Therefore, parents stand to benefit from knowledge sharing in workshops.
It is also important to point out that the term enabler in the current study refers to strategies employed to improve the utilization of healthcare services for people with autism (Singh et al., 2018) Some of the issues faced by these parents include the stigma associated with autism and other mental conditions (Broder Fingert et al., 2018), discriminatory treatment by healthcare providers (Slade et al., 2018), and limited knowledge about the diagnosis and treatment of ASD (Chandrasekhar & Sikich, 2022), to mention just a few. According to Jamison et al. (2018), there has been increased knowledge about ASD among Blacks and Latinos, specifically on the etiology, symptoms, and treatment of ASD. The current study investigates how improved understanding among parents of children with autism and healthcare providers can improve the utilization of healthcare services for children with autism.
A better understanding of how Black American and Latino parents utilize healthcare services is essential because it puts into perspective the issues that need addressing to improve healthcare service utilization among these minority populations. Early diagnosis is, for example, associated with long-term benefits to the child (Broder Fingert et al., 2019). Because children cannot seek medical attention by themselves, it is essential that their parents understand the symptoms of autism and how to help children diagnosed with the condition. Research indicates that delayed diagnosis and subsequent placement in therapy programs for children with autism is an issue for Blacks, Latinos, and other populations, hence the need to produce appropriate measures for dealing with the problem (Valicenti-McDermott et al., 2018). The current study explores how knowledge sharing in workshops between parents and healthcare providers about autism can improve the utilization of healthcare services for children with autism. An example of the knowledge shared in the workshops is the interpretation of different symptoms and diversified responses to treatment. Understanding different descriptions of symptoms (in this case among Blacks and Latinos) will improve diagnosis so that the parent does not ignore signs which might indicate abnormal development. Consequently, this may improve the chances of these children receiving the healthcare attention they need. The current study expands on autism as an area of research by investigating how knowledge sharing among parents in workshops can help improve the utilization of healthcare services for Black and Latino children with autism.
The utilization of available healthcare services is vital as it impacts the healthcare outcomes of a population. There is a disparity in the use of healthcare services. Minority groups such as Blacks and Latinos underutilize healthcare services (Langellier et al., 2019; Pylypchuk & Sarpong, 2018). Income/socioeconomic status is one of the significant factors that account for the low utilization of healthcare services among ethnic minority groups (Özyurt & Eliküçük, 2018). For Latinos, for example, only about 34% have a usual source of medical care, whereas 27% lack insurance to cover their medical expenses. Current immigration status is also one of the contributing factors to the underutilization of healthcare services (Camarota, 2018). Some Latinos also report that apparent discrimination in the healthcare system serves as a deterrent to the utilization of healthcare services (Camarota, 2018). The current study investigates knowledge sharing in workshops among parents of children with autism (specifically Blacks and Latinos) as an enabler to improved utilization of healthcare services.
Socio-Economic Factors
Knowledge of the services and resources at the disposal of parents of children with autism helps reduce parental stress and anxiety. For example, knowledge of available special education programs and behavioral treatment programs for children with autism helps alleviate the stress and anxiety experienced by the parents of these children (Rovane et al., 2020; Jamison et al., 2018). Black and Latino parents of children with autism are affected more by the children’s condition because their knowledge of the available support services is limited (Durkin et al., 2018; Jamison et al., 2018). The fact that parents may be in denial about this condition and its existence in their communities further exacerbates the problem, interfering with their willingness to seek help and advice on how to deal with the situation. That can be turned around through knowledge sharing about autism in workshops.
A positive correlation exists between the family’s socioeconomic status and their utilization of healthcare services (Slade et al., 2018). Zuckerman and his colleagues investigated how healthcare quality, family employment, and financial impacts are associated with children with special healthcare needs (CSHCN) with ASD (CSHNC+ ASD). The findings revealed that healthcare quality indicators are abysmal among CSHNC+ ASD populations. Poverty hinders some Latino families in the quest for quality healthcare for their children with autism. Some Latino families have limited cash set aside to pay for diagnostic appointments, so they end up postponing them until the problem becomes too severe to ignore.
Some families have parents who work multiple, low-paying, and sometimes seasonal jobs where they do not have the flexibility to request time off to take their children for diagnostic appointments (Slade et al., 2018). Moreover, having limited cash to pay for transportation to attend diagnostic meetings and limited insurance coverage makes it difficult for Latino families to participate in diagnostic appointments consistently, hence the limited utilization of healthcare services among these families. Because of financial constraints, some Latino families disregard their children’s mental healthcare concerns until they meet the family’s more basic and immediate needs (Slade et al., 2018; Robson & Gingell, 2020). Delays in seeking care services negatively impact the health outcomes of the child with autism. Black children with autism experience poor quality of care compared to White children with autism or other special healthcare needs (USC, 2018). They are a lack of evidence on whether this is the case for Latino children with autism. The current study investigates knowledge sharing in workshops between healthcare providers and parents of children with autism as an enabler to improve the utilization of available healthcare services.
Besides the economic cost, the social burden of receiving an ASD diagnosis can also cause reluctance among parents to have their children receive treatment. Firstly, this medical condition is associated with much stigma among Latino communities (Slade et al., 2018). Secondly, receiving an ASD diagnosis means that the parents must arrange for childcare for other children and organize transport services to get to healthcare facilities (Slade et al., 2018). Furthermore, getting an ASD diagnosis means that the child’s life changes significantly, such as interacting with strangers. This is a reality that many parents find challenging, so once the child gets an initial ASD diagnosis, parents are reluctant to follow up on future appointments (Slade et al., 2018). Zuckerman et al. (2018) confirm the legitimacy of the above-stated barriers to utilizing healthcare services for Latino families. Previously conducted studies have focused on identifying the challenges those parents of children with autism face, with a narrow focus on the application of enablers to improve the utilization of healthcare services (Zuckerman et al., 2018). The current study focuses on knowledge sharing in workshops as an enabler to enhance the use of healthcare services for Black and Latino parents whose children have autism.
Latino communities have a unique way of dealing with the diagnosis of autism in their children (Chandrasekhar & Sikich, 2022). Some Latino mothers respond to the signs of autism by reaching out to extended family members, seeking further information on the condition, and turning to religious beliefs for comfort. Some sources of information include family members, local organizations, and the internet. Despite being a source of information, Latino family members show reluctance to accept the diagnosis of autism. Some families have a wait-and-see attitude, which inclines them to believe that the diagnosis is inaccurate because this would be a better outcome for them, mainly because it would save them the financial strain associated with the care of children with autism (Chandrasekhar & Sikich, 2022). Thus, even though they obtain information and diagnosis, they fail to utilize healthcare services because they eventually do not receive proper care or treatment effectively.
The belief in God of some Latinos also serves as an essential coping mechanism (Chandrasekhar & Sikich, 2022). When parents finally accept that their children have autism and that this is a lifelong condition, they turn to their religious beliefs hoping for healing from God. Knowledge sharing in workshops can help Latino parents appreciate the importance of utilizing healthcare services, especially for diagnosis, to determine the best way to proceed with other healthcare services. Also, for those parents who prefer to seek also religious help, they can share with others their experiences at such workshops.
For some Latino families, gender roles are essential in determining the child’s health outcomes. The mother has the primary purpose of ensuring that the child is cared for, which means that they are responsible for changing the routines in response to ASD (Chandrasekhar & Sikich, 2022). Mothers are responsible for seeking healthcare services for their children because fathers sometimes oppose such efforts. Because mental conditions reflect poorly on the father, they can be adamant about not seeking healthcare services to prevent other community members from finding out about the child (Chandrasekhar & Sikich, 2022). Therefore, if the child with autism benefits from healthcare services, the mother sometimes needs to take the initiative to seek and utilize these services.
The obstacles to improved utilization of healthcare services will inform the application of knowledge sharing in workshops as an enabler to the enhanced use of these healthcare services. The five boroughs of New York City have a designated Regional Center for ASD, the Child Center at Hassenfeld Children’s Hospital at NYU Langone (NYU Langone Health, 2018). The Regional Centers partner with University affiliate programs designed to identify, distribute, and help implement evidence-based practices to improve services and outcomes for children diagnosed with ASD. Typically, Black American, and Latino parents need education on these services to seek help for their ASD children actively.
There is some literature on the challenges that Latino and Black parents of children with autism face in accessing quality healthcare services (Holloway & Mpofu, 2018; Zuckerman, 2019), but what the current study covers is how knowledge sharing in workshops involving parents of children with autism can apply as an enabler to improved utilization of healthcare services for specific minority populations: Blacks and Latinos. The increasing prevalence of autism in New York City makes it an appropriate region to conduct the study (Neggers, 2020). Between 2014 and 2015, the number of students classified as having autism in New York City was 13,685; by 2017, this number had risen to 17,015 (Taylor, 2020). Early detection of autism in children can help parents and children in various ways.
First, early diagnosis is essential for improved healthcare outcomes. Early diagnosis of autism is beneficial to the child because it means that the child stands a good chance of accessing proper intervention at a time when optimal results are much easier to achieve (Barton et al., 2021; Braddock & Twyman, 2019; Siller et al., 2018; Ung et al., 2021). Intervention at an age result in lower costs to the government and the families over the child’s lifetime (Britto, 2018). Longitudinal research shows that early intervention improves the child’s cognitive and social skill functioning (Campbell et al., 2020). When diagnosis and subsequent treatment for children are delayed, the child has poor treatment outcomes. They also need more therapy sessions for the child to improve significantly (Britto, 2017). Consequently, that would eventually negatively affect healthcare intervention.
When parents delay taking their child for diagnosis, they compromise the effectiveness of the therapeutic process for the child, and the child may never achieve the optimal desired well-being. That is the outcome when parents of children with autism fail to utilize available healthcare services for the benefit of their children. USC (2018) contended that the Black and Latino population have historically been disadvantaged regarding early diagnosis of ASD. Because of factors such as poverty, Blacks and Latinos experienced delayed diagnosis and subsequent delayed treatment; children experienced disadvantages in other spheres of life. For example, the children of Black and Latino parents will join school late and at a problem because of delayed treatment, hence development milestones. Failing to take the child for early diagnosis results in negative impacts in several spheres of life besides health, for example, education, social life, and later in life, even work experience. In this case, the underutilization of healthcare services associates with poor social-economic status.
Healthcare Utilization among General Population vs. Among Minority Groups
This section discusses existing literature in line with the utilization of healthcare services, starting from the general population and then narrowing it down to two minority populations: Blacks and Latinos. The section aims to compare healthcare utilization with the general population to understand and their difference. Therefore, to justify the need to research the importance of improving healthcare utilization among minority groups vis-à-vis the general population.
General Population
One main barrier that hinders the improvement of the well-being of people with health conditions is a fragmented care system. Given the comorbidity of physical and mental states, Americans have separate care systems (mental health care systems and medical care systems), each governed by different priorities, regulations, culture, and financial incentives (Knickman et al., 2019). Knickman et al. (2019) published the barriers to improved health outcomes. The researchers cited three main obstacles to enhanced well-being: a fragmented care system, a workforce that is undersized, underprepared, and poorly distributed, and payment models that encourage care silos.
In their focus on delivering specific care services, the systems fail to address critical issues such as how to help the patient lead a wholesome, productive, and satisfying life. (Kim et al., 2020) highlighted the problem with a fragmented healthcare system stating that a fragmented system easily ignores low-income earners. Manufacturers of pharmacological products target a specific market niche, and healthcare facilities focus on attracting the proper case mix rather than acting in the public’s interest. Despite technological advances, this approach is ineffective (Kim et al., 2019). The fact that the healthcare workforce is undersized, poorly distributed, and not fully prepared to deliver quality and effective care makes the care systems inadequately resourced to provide integrated care.
The limited diversity of the workforce in race, ethnicity, and geography also makes the care systems inadequately resourced to serve people efficiently (Knickman et al., 2020). The predominance of payment models that reinforce the fragmentation of care and care silos hinder improved healthcare conditions (Knickman et al., 2020). There is a need to develop and implement healthcare models that are guided by the interest of the public and not the interest of manufacturers or private healthcare facilities, which bend towards maximizing profits (Scheffler et al., 2020). At the same time, such models need to balance healthcare outcomes with return on investment, especially for the private sector healthcare, since this would ensure that the industry fully invests in improving healthcare outcomes for people with autism.
If people are not confident about the effectiveness of healthcare services, they will be reluctant to utilize them. They will not go for checkups until they feel it is necessary. This is not the ideal time to seek and use care services because the condition may have developed significantly, making therapeutic interventions less effective than if care services were sort earlier (Mhalu et al., 2019). It is also important that the perception that patients have of healthcare providers inspires healthcare-seeking behavior. For example, parents are more likely to seek and utilize healthcare services if they believe that the healthcare provider, they see has the child’s best interests at heart. Children diagnosed with a comorbid condition have a greater need for healthcare services because they usually need to undergo several therapeutic services concurrently. Parents’ perception of the ability of healthcare providers to act in a culturally competent way affects their decision to seek and utilize healthcare services for their children (Van der Gugten et al., 2022). Therefore, implicit in the role of care providers is the responsibility to demonstrate competence to improve healthcare-seeking behaviors among patients.
Experience of Minority Families of Children with Autism
Raising a child with autism affects the well-being of the parent. Catalano et al. (2018) reported that parents of children with autism have higher stress, depression, and anxiety levels than parents of children not diagnosed with autism. Consequently, when the mental health needs of these parents go unmet, it can pose a significant danger to their psychological, physical, and social well-being and that of their children (Catalano et al., 2018). If left to their means, parents of children can suffer socially, psychologically, and physically. However, when they get support, the well-being of the parents can improve significantly, resulting in better interaction between these parents and their children. Support groups that allow parents of children with autism to interact in discussions reduce the anxiety of the parents in raising children because of the validation that they get from other parents and the minimized feelings of isolation (Catalano et al., 2018; Gentles et al., 2019; Ingersoll & Hambrick, 2018). Social stress and anxiety also reduce significantly when parents of children with autism participate in parenting social groups.
Notably, the involvement of parents of children with autism in parenting social groups often results in improved health and family functioning (Samadi et al., 2021). Stress, anxiety, and distress among parents are also reduced significantly when parents gain information about autism and ways of dealing with the condition to mitigate the negative impacts that the state has on a child’s life (Farmer & Reupert, 2018). Nykopp and Partanen (2020) reiterated that parents of children with autism experience disproportionately higher stress levels than parents without autism. They argue that these stress levels are associated with negative psychological issues, including mood disorders and depression (Miranda et al., 2019). The level of stress that these parents experience influences their mental health. Through knowledge sharing in workshops, parents of children with autism can learn about improving the experience of their children with autism through the utilization of available healthcare services. That would, in turn, improve their psychological well-being. The current study investigates how knowledge sharing in healthcare workshops involving healthcare providers and parents of children with autism can achieve that.
It is also vital for parents to know what symptoms to look out for to know whether their child should get an appointment with a specialist. There are, for example, developmental milestones that can serve as an alarm that a child needs a diagnostic checkup. Gross and fine motor skills have been identified as important milestones for children, mainly because they affect other cognitive and behavioral developments in a child, including language, social interaction, and learning (Liddle, 2018). Parents need knowledge about such developmental milestones and deficits to look out for and what delays. That helps avoid the scenario where parents ignore symptoms of autism, as was observed in the argument by Liddle (2018). Such knowledge can also help parents improve their utilization of available healthcare services (Smith et al., 2020). Such knowledge can be gained through knowledge sharing in healthcare workshops involving parents of children with autism and, in turn, help with early diagnosis of minority groups.
Although early diagnosis is essential for effectively managing autism, some Blacks and Latinos have not been able to enjoy the benefits of this early diagnosis. Over the years, the screening process for ASD has improved the opportunities for Black and Latino parents to have their children with autism properly diagnosed early enough (Emerson et al., 2018). The improved screening process for ASD alludes to reduced inaccurate diagnoses and fewer trips to healthcare facilities for diagnosis by parents (Emerson et al., 2018). Knowledge of such improvements among parents can motivate them to utilize available healthcare services because they believe their children with autism will get the help they need (Smith et al., 2019).
Strained access to quality care for families of minority populations, such as children with autism, makes parents lose trust in healthcare providers, which interferes with their utilization of healthcare services. In a study by Zukerman et al. (2019), Latino parents reported trust in their healthcare providers during the initial stages of the diagnostic process. However, frustrations along the way resulted in the parents losing trust in healthcare providers. Parents began doubting that the care providers were acting in the best interests of their children. Some parents reported that they believed that the healthcare providers were deliberately making the healthcare services challenging to access because of their inability to pay for care services out-of-pocket.
In the study, Access to Quality Care, other parents reported that they believed that their children were being used as test subjects to facilitate research. The consequence perception by parents is that they suspected that the prescribed continued contact with the care providers for the child with autism was to use the child for experimental programs. As reported in the study by Arnett et al. (2020), this mistrust between healthcare providers and Latino parents caused the parents to be reluctant to act upon the recommendations of the care providers. That is evidence of how mistrust of healthcare providers by parents of children with autism can influence the utilization of available healthcare services. Understanding autism is more important for minority groups, such as Black and Latino parents, because, as was mentioned above, these people register a lower utilization of healthcare; hence, they are at a higher risk of suffering from the effects of illness (Smith et al., 2021). Thus, such minorities need more knowledge of autism to reduce the condition’s impact or identify the symptoms early enough.
Early diagnosis of autism is essential because it means the parent will seek specialized treatment for the child. Advocates of special treatment for children with autism continue to push for specialized programs in schools to ensure that children with autism benefit from the education system as much as their peers who do not have this condition. Special education provides extensive evaluations and services to children with developmental disabilities such as ASD (Christensen et al., 2018). However, it is difficult to achieve a goal for children of Latino parents because of delayed diagnosis and the continued denial of the existence of this condition among these communities (Taylor, 2020). Gaining knowledge through knowledge-sharing workshops with parents about the nature of autism can help parents turn this around through improved healthcare service utilization. It is, therefore, essential to investigate the effectiveness of knowledge sharing as an enabler to enhance the use of healthcare services for Black and Latino children with autism.
Knowledge and Perception of Autism among Black and Latino Parents
The perception that some Latino parents have of autism contributes to delayed diagnosis. Some Latino parents are reluctant to accept autism as a disorder that contributes to their delay in seeking healthcare services (Zuckerman et al., 2019b). From the findings of their study, Zuckerman et al. (2019b) reported that limited knowledge of autism among Latino parents also contributes to delayed diagnosis because parents often do not know when to seek healthcare services. Research suggests that understanding autism is limited for Black and Latino parents (Zuckerman et al., 2019). According to Zuckerman et al. (2019), some Latino parents reported that before their child’s diagnosis, they often knew little to nothing about autism. Knowledge sharing between parents and healthcare providers would increase awareness about autism, such as presenting symptoms, and this would positively impact the utilization of available healthcare services.
The perception that Blacks and Latinos have towards care providers also discourages them from seeking healthcare services. Blacks and Latinos report that they do not receive the information they need from healthcare providers, and they are generally less satisfied with their interaction with care providers than Whites (Pearl, 2018; USC, 2018). This situation makes early diagnosis increasingly difficult because parents must seek healthcare services when they notice their child acting a little differently than his or her peers who do not have this condition. Knowledge sharing between parents and healthcare providers in workshops can help improve this situation as healthcare providers learn about this perception held by parents, and parents learn about the importance of seeking an early diagnosis. That would prompt healthcare providers to change the perception among parents by improving service provisions, whereas parents must find healthcare services for their children with autism early enough.
Culture can influence people’s perception of medical conditions. Among some Latinos, for example, parents may suspect that there is something wrong with their child. Still, they are reluctant to accept that their child has a mental condition because of the stigma associated with such situations in this community (Zuckerman et al., 2019c). Among some Latino families and parents, there is active resistance to accepting that autism is a medical condition and that it does exist in their communities. According to Zuckerman et al. (2019a), people readily label children who show symptoms of autism, but parents are very reluctant to admit that this condition is autism. Therefore, the health of these children may go unexplained for a long time, which delays their getting proper and quality healthcare services. Mental conditions, such as autism, are often associated with stigma among some Latinos because some consider them shameful and embarrassing (Zuckerman et al., 2019a). This perception contributes to a delayed diagnosis of autism, which can hinder the child’s development. Gender also plays a role in the diagnosis of autism among some minority groups.
The traditional view of some Latino male gender roles (machismo) also contributes to a delayed diagnosis of autism. Some Latino mothers perceive having a child with a mental condition as a poor reflection of the child’s father (Torres et al., 2022). That results in some fathers actively discrediting the mother’s concerns. Some fathers are uncooperative and dissociate themselves as much as possible from the diagnostic process. Fathers are reluctant to admit and accept the facts about their sons’ mental conditions because it affects how their sons integrate into society. Some fathers of sons with autism feel that they cannot present them proudly to other community members (Zuckerman et al., 2019a).
Therefore, when mothers suggest that their sons require check-ups for mental disabilities, fathers refuse and even try to convince the mothers that they are crazy for suggesting that their sons are not mentally stable. It is unclear whether such sentiments also apply to daughters because the study focused on fathers’ perceptions of their sons. That is a perception that healthcare providers can help change among parents through knowledge sharing in workshops (Zuckerman et al., 2019a).
Interaction among parents of children with autism can help improve the well-being of children with autism. Hannon et al. (2018) indicated a different perception among some Latino fathers compared to what Zuckerman et al. (2019a) reported. According to Hannon et al. (2018), some Latino fathers of children with autism find it helpful to connect with other families with children with this condition. Some Latino fathers reported that the information they get from other parents of children with autism is crucial because these parents have first-hand experience with the disease (Hannon et al., 2018). According to Hannon et al. (2018), the value of the support that fathers receive from talking to other parents about their child’s condition overshadows the stigma associated with having a child with autism. That is further evidence of the importance of healthcare workshops because they bring together people with similar experiences who can support each other.
How other community members perceive a medical condition influences parents’ willingness to admit their child has it. Interviews conducted by Chandrasekhar and Sikich (2022) put the issue of stigmatization into perspective. Some Latino parents report enormous discomfort associated with having one’s child singled out in the community. To avoid gossip (what Latino parents refer to as Chisme), some Latino parents of children with autism have developed various strategies to cope with the condition. Some parents reported that they would avoid telling other people about their child’s health for fear that this information regarding their child’s situation would reach their village of origin (Chandrasekhar & Sikich, 2022). This failure to open up regarding the issue of autism further inhibits knowledge sharing, which is detrimental to healthcare utilization.
Other parents reported that they would mask their child’s atypical behavior. For example, if a child bursts out laughing, the mother would tickle the child so that it would appear as though the child is laughing out of the tickling and not because of autism (Chandrasekhar & Sikich, 2022). The discomfort of having people judge their child’s behavior leads some Latino parents to isolate their child from the rest of the community (Chandrasekhar & Sikich, 2022). Some Latino parents say that having their children diagnosed with autism changed the dynamics of their relationships with their friends and neighbors (Zuckerman et al., 2019c). Even though parents believe that their friends and neighbors are good, they fear they will not be able to match up socially because their child does not match up socially (Chandrasekhar & Sikich, 2022).
Knowledge sharing in workshops can help eliminate such negative cultural perceptions about autism. Such an approach would positively impact the utilization of available healthcare services among Latinos, such as improvement. Some Latino parents have ambivalent feelings about the impact of primary care providers. In the study by Crocetti et al. (2019), some Latino parents said that primary care providers helped facilitate early and effective diagnosis; others felt that primary care providers ignored their concerns regarding the mental health of their children. Some Latino parents reported having to switch several times between healthcare providers before finding a care provider that took their concerns seriously. That is because care providers are reluctant to treat Latinos who might not have the financial capability to cover healthcare services out-of-pocket or have insurance coverage (Crocetti et al., 2019). Therefore, the bias of some healthcare providers against some Latinos is because of the stereotype that Latinos come from poor socioeconomic backgrounds. When parents of children with autism share such experiences with healthcare providers in workshops, healthcare providers can produce ways of improving these experiences, and parents get the opportunity to weigh in on the matter.
Limited English proficiency is also a barrier to the utilization of healthcare services. According to Zuckerman et al. (2019b), some Latino parents did not feel that primary care providers ignored their concerns because they were racist. Still, they believed that their limited proficiency in English interfered with their desire to articulate their interests as well as they wished to. This communication barrier makes the experience of the diagnostic process for some Latino parents slow, complicated, and less productive than they hope (Zuckerman et al., 2019c). The slight delays that the parents experience at different healthcare facilities accumulate to make the diagnostic process seem slow and complicated, discouraging more parents from seeking these services before they feel it is necessary.
Understanding the perception of autism among Latinos and Blacks is vital because it influences healthcare-seeking behaviors among these communities, such as early diagnosis for children with autism. Early diagnosis allows healthcare providers to make interventions at a suitable time. For autism among Latinos, early diagnosis is vital because Latinos offer more severe symptoms than other populations (Zuckerman et al., 2018b). Black children require more contact with healthcare providers before receiving a diagnosis of autism compared to white children, which indicates the importance of utilizing healthcare services much earlier. Understanding how the diagnosis for Blacks and Latinos varies is also essential because research indicates that symptoms among these populations can present differently (USC, 2018). The stigma associated with mental conditions is a barrier to increased utilization of healthcare services, which further increases the chances of delayed diagnosis. Consequently, this affects the well-being of children from these populations later in life (Zuckerman et al., 2019a). The current study investigates how knowledge sharing in workshops can help improve the utilization of healthcare services for Black and Latino children.
Knowledge Transfer and Knowledge Sharing
Knowledge transfer and knowledge exchange are central concepts when discussing the challenges experienced in healthcare systems. However, most of the existing knowledge transfer and sharing literature is about practitioners and researchers; hence, a few works exist about knowledge transfer across parents. Pentland et al. (2018) define knowledge transfer as communicating forms of knowledge to relevant stakeholders through various methods. Further, they define knowledge exchange as the interactive and ongoing process of collaboration that provides research users with the information they perceive as relevant in usable formats.
In contrast, the research producers receive information about the needs of research users. How to research knowledge is communicated to healthcare providers was particularly interesting to Pentland et al. (2021). Knowledge transfer is a prerequisite for knowledge exchange. The researchers conducted a meta-analysis on knowledge transfer and knowledge exchange and found them essential in improving patients’ experience with the healthcare system.
Besides knowledge transfer from the researcher to the healthcare provider, knowledge exchange in workshops between healthcare users would also improve patients’ experience with the healthcare system. However, as noted earlier, knowledge transfer is a prerequisite for knowledge exchange. That is, healthcare users need to learn about the experience of other parents so that they can share them with other parents in a workshop. In the current study, knowledge sharing differs from knowledge transfer and knowledge exchange concepts, as described by Paulin and Suneson (2020), in that it is between parents with autistic children and other parents with the same children. Parents exchange their experiences with children with autism and learn from each other.
Knowledge sharing in workshops could improve the utilization of healthcare services for Blacks and Latinos because these communities have unique experiences with autism. For example, Blacks and Latinos report that the treatment they get from healthcare providers makes them skeptical about care providers having their best interest at heart or their recommendations being helpful (Zuckerman et al., 2019c). Sometimes, healthcare providers deal with patients from these ethnicities differently because they do not think they have autism. Mainly, this is because symptoms may be interpreted differently by patients of these ethnicities (Zuckerman et al., 2019b), so they may not give the care provider all the relevant information to allow for proper diagnosis. Knowledge sharing in support group workshops may improve the understanding of the presentation of symptoms of autism for parents, and the healthcare providers will know how to deal with these populations appropriately. That could enhance healthcare-seeking behavior among Blacks and Latinos, consequently improving utilization.
Although existing studies have focused on knowledge transfer and sharing among parents with children with different severe conditions like autism, no current studies shed light on the challenges Black and Latino parents with autistic children face while seeking healthcare. A recent survey by Mutia and Atmi (2018) investigated the information-sharing behavior and challenged Indonesian parents of children diagnosed with ASD faced. The study found that both passive and active behaviors and factors such as trust, reward, self-efficacy, anger, and satisfaction influence knowledge sharing and transfer among the parents. The study applied a snowballing sampling method to reach the target participants of the research, who were also members of a community group named Autism Awareness Advocacy (ASA).
In another study, parents with disabled children find places where they interact with other parents beneficial (National Research Council, 2021). Exchanging views among healthcare users helped promote research culture. Interpersonal educational workshop that also focused on educating health professional students on the misuse of opioids, the researchers found that health students reported a high level of satisfaction with the seminar (Monteiro et al., 2020). That is evidence of the importance of workshops as an avenue for knowledge sharing.
The importance of knowledge-sharing workshops arises when involving inter-professional collaboration and when it results from the co-production of healthcare services among parents. The current study investigates whether knowledge sharing among parents of children with autism would improve the utilization of available healthcare services for children with autism. According to Karamitri et al. (2018), workshops present an excellent opportunity for knowledge sharing among healthcare users. They reported that knowledge sharing among healthcare users helps them improve their service provision.
The study by Karamitri et al. (2018) also identified time restriction as a daunting barrier to successful knowledge sharing. Still, healthcare users can be motivated to engage in it through a reward system for users who serve as knowledge brokers. The study proposed that patient-centered knowledge sharing has the maximum value. Therefore, one way to go about maximizing the value of knowledge sharing is by collaborating with patients collaboratively. In the current study, this means involving a parent in knowledge-sharing workshops.
Various legislative mandates have emphasized the importance of parent-professional partnerships, including the No Child Left behind Act and the Individuals with Disabilities Education Act (Trajkovski et al., 2018). Programs such as the Partnerships for Autism through Collab¬orative Community Choice and Empowerment (Project PACE) help to facilitate parent-professional partnerships. Project PACE is one of the programs that have used workshops to improve the competency of parents who have children with autism. In the workshops, parents collaborate with professionals. The program employs the train-the-trainer model, whereby volunteer participants acquire knowledge and skills, which they then transfer to others (Nicolaidis & Raymaker, 2018). The current study will apply a similar model, but instead of parent-professional collaboration, it will be a social support group where parents share knowledge of their experiences amongst themselves.
As Nicolaidis and Raymaker (2018) reported, the parent-professional model is promising as each brings something unique to their expertise. The model operates on the premise that working together in collaboration with families and professional’s results in empowerment and, consequently, meeting the needs of the child with autism. The social support workshops offer a platform for knowledge sharing. The social support workshop that interests the current study is where parents meet with other parents in a formal forum, unlike in PACE (where parents meet with healthcare providers) to share their experiences dealing with children with autism. Although the impact of PACE has undergone examination before (Murray et al., 2018), the social support workshop project has not been studied when in use among minority groups, such as Blacks and Latinos.
Thus, the current study will also study the effectiveness and efficiency of a social support workshop with parent-to-parent interaction when used by minority groups, such as Blacks and Latinos. Nicolaidis and Raymaker (2018) reported that workshops are very productive because the experience brought in by various parties offers invaluable insight into how to approach different issues. Multiple groups have a unique experience with the healthcare system. Therefore, by including one unique group not studied before (parent-to-parent interaction and Black and Latino parents), the current study will produce recommendations tailored to the needs of this specific group.
Workshop as Enabler of Utilization of Healthcare Services
Researchers have identified several strategies that can be employed to improve the utilization of healthcare services for children with autism (Trajkovski et al., 2018). The focus of the current study is how knowledge sharing among parents with autistic children’s users can be applied as a social enabler to improve the utilization of healthcare services for families of children with autism. This goal of knowledge sharing is achievable through knowledge sharing in workshops between parents of children with autism and other parents, which is the focus of the current study. The study investigates how Blacks and Latinos can explicitly employ this enabler of parent workshops. Although previous studies have highlighted parent-professional workshops as an enabler (Camm-Crosbie et al., 2018), few have zeroed in on social support groups, specifically ethnic minority groups.
There are several enablers explored in the efforts to improve the utilization of healthcare services for populations with autism. Research has shown that minority groups have low use of healthcare services (Kattari et al., 2018; Macapagal et al., 2018; Sommers et al., 2019; Tsoh et al., 2020). Therefore, what warrants the current study is that few previous studies have focused on social support kinds of workshops (parent-parent) as an enabler to improved knowledge sharing, hence the utilization of healthcare services for Black and Latino families of children with autism.
There is no shortage of knowledge or literature on healthcare and best practices, but still, the knowledge generated through research can be said to underutilize (Belle et al., 2021). This knowledge is part of what care providers should exchange in the workshops. However, it is not the only shareable knowledge since different people participate in the workshops (including parents whose experiences do not exist in recorded research). It is, therefore, essential to understanding concepts associated with knowledge sharing in workshops.
The current study investigates healthcare utilization among minority groups, namely Black and Latino parents raising children diagnosed with autism. Existing studies on healthcare utilization have focused on the impact of various factors, including financial problems, leaving a gap around the use of healthcare among Black and Latino parents with autistic children, and factors that could improve healthcare utilization, such as knowledge sharing. The primary research question is ‘what is the impact of knowledge sharing on healthcare utilization among Black and Latino parents with autistic children? The secondary items: are first, can knowledge sharing improve parent attitudes toward healthcare? Secondly, can knowledge sharing reduce negative stereotypes and stigma during healthcare utilization? Thirdly, can sharing knowledge in workshops help increase awareness, which would increase the use of healthcare?
Chapter Summary
The healthcare experience of parents of children with autism is unique compared to parents of children who do not have this condition. Parents of children with autism have a greater need for healthcare services when compared to other parents. That is much more the case when children experience comorbidity of autism and other psychiatric conditions. Beyond this, minority groups such as Black and Latino parents of children with autism have low utilization of healthcare services. Because of factors such as socioeconomic status and being inadequately informed about the importance of using healthcare services, Black and Latino parents of children with autism underutilize available healthcare services for their children. Challenges such as stigma and limited knowledge have featured prominently as barriers to improved utilization of healthcare services. The current study focuses on how knowledge sharing as a social enabler can be employed to improve healthcare services for Blacks and Latinos with children with autism. The study will adopt a model different from that of the PACE (parent-professional) workshop, which will be based on the social support groups (parent-parent) model to examine how Black and Latino parents of children with autism share knowledge and, in turn, the impact of the model on their children’s health outcomes. By using a phenomenology design and semi-structured interviews, the current study will collect data to fill the gap identified in this chapter. Chapter three details the methodology for application in data collection.
CHAPTER THREE
This qualitative, descriptive research design aims to understand the unique systematic barriers that Latino and African American parents with children with ASD face and the perceived role that racial bias may play in accessing continuous, quality care for their autistic children in New York. A descriptive qualitative design was deemed the most appropriate as it appropriately addresses the subjective nature of a problem and the varying experiences participants have, allowing us to present the findings in a way that directly reflects the research questions. Moreover, descriptive qualitative design is particularly relevant in healthcare research and the design of healthcare interventions (Doyle et al., 2020).
Qualitative descriptive research generates data that describe the ‘who, what, and where of events or experiences from a subjective perspective (Kim et al., 2018). From a philosophical perspective, this research approach best aligns with constructionism and critical theories using interpretative and naturalistic methods (Lincoln et al., 2019). These philosophical perspectives represent the view that reality exists within various contexts that are dynamic and perceived differently depending on the subject. Therefore, reality is multiple and subjective (Lincoln et al., 2019). This qualitative descriptive research translates into researchers being concerned with understanding the individual human experience in its unique context. This type of inquiry requires flexible research processes that are inductive and dynamic but do not transform the data beyond recognition of the phenomenon being studied (Ormston et al., 2021 & Sandelwoski, 2020). Descriptive qualitative research has also been aligned with pragmatism (Neergaard et al., 2019), where decisions are made about how the research should be conducted based on the aims or objectives and context of the study (Ormston et al., 2021). The pragmatist researcher is not aligned with one view of knowledge generation or methodology. Instead, they look to the concepts or phenomena being studied to guide decision-making in the research process, facilitating the selection of the most appropriate methods to answer the research question (Bishop, 2020).
This study chapter will focus on answering the how and what questions. This section will provide detailed approaches that will have been employed in the research to collect and analyze information. In general, this chapter aims to describe the research methodology adopted in the qualitative study regarding the perceptions of Black and Latino parents of children with ASD Disorder on the challenges of providing care to their children. This approach will enhance a broader and more profound comprehension of the meaning and perspective of the parent’s perceptions of the challenges facing care for children with ASD from the participant’s standpoint. This chapter will also provide the rationale for applying the chosen techniques and procedures and provide an analysis of the information used to explain the problem, thus allowing the reader to critically evaluate the overall reliability and validity of the research study. The steps followed in this section attempt to answer two primary questions regarding how data will be generated or collected and how it will be analyzed.
This chapter is an integral part of the research paper as the readers and users of the study results need to understand how the researcher obtained data since the technique chosen affects the results and interpretation of the significance of those results. The chapter is also crucial since the choice of an unreliable method produces unreliable results and thus reduces the value of the interpretation of the findings (Shannon-Baker, 2019). This chapter describes the qualitative methodology, which is used in the generation and collection of the results. It thus gives the reader a chance to find out if the researcher used techniques and procedures consistent with the accepted practice in research. In addition, to describing the methods applied in the study, this section provides the reasons for selecting specific techniques.
The primary components of this chapter include the methodology section, which describes the method, its justification, and how it addresses the hypothesis and research questions. Another part is the data collection methods section describing the means to be used, the type of data, the protocol in data collection, and protocol justification. The study’s population, sampling procedures, data analysis, validity, reliability, and confidentiality issues are significant components.
METHODOLOGY SELECTED
Describes which qualitative methodology will be used.
_____ Justifies choice of methodology using major and foundational sources.
_____ Explains why other possible choices would be less effective.
———Includes the phenomena statement here.
This study seeks to answer the following research question:
RQ 1: How do Latino and African American parents of children with ASD describe unique systematic barriers they experience when accessing continuous, quality care for their autistic children?
RQ 2: How do Latino and African American parents of children with ASD describe their perception of the role that racial bias may play in accessing continuous, quality care for their autistic children in New York?
Describes the role of the researcher in the data collection procedure.
_____ Addresses the potential impact and minimization of researcher bias through methodological approaches
Study Participants
Describes and justifies the context (including site) for the study.
The general population are parents of children with autism. The specific population of the study for participation is Black and Latino parents of children aged between 1 to 10 years with autism living in New York.
This study will use snowball sampling. Using the snowball sampling method, the sample will be acquired from a population of Black and Latino fathers and mothers of children with ASD who have lived in New York for more than ten years. The reason for the timeframe lined is to increase the accuracy of the results by ensuring that the sample studied has experienced the health care system in New York and has not just moved into the city. There will be no limitation on the age or occupation of the Black and Latino parents. The expected sample size is 10, 5 Latino and 5 African American participants. Another age and stages questionnaires eligibility criterion for the participants will be self-identify as either Latino or Black American. Only parents, caregivers, guardians, or family members of children between 6 and 12 years who are developing or diagnosed with ASD will be included as participants in the proposed study. Recruitment continued until we reached thematic saturation. Black and Latino fathers and mothers of children with autism will be identified using a snowball sampling method from New York City in the United States of America.
Data Collection
Describes and justifies the data collection method(s) (e.g., interview, focus group, observation).
_____ Addresses what types of data will be collected
_____ Includes detailed protocol(s) in appendix for data collection (e.g., interview protocol/script, focus group protocol/script, etc.).
_____ Justifies contents of data collection protocols by connection to the research questions posed in relation to the qualitative paradigm chosen.
Procedure Followed
The research protocols and materials used during the observation will be sent for approval by the university Institutional Review Board. Before conducting the study,
• The researcher will seek ethical approval.
• The researcher will also provide the IRB approval to the institutions and attach it alongside the participants’ consent forms for consumption.
• The researcher will design the semi-structured interview guide.
The steps for your research need to be done all over. There is a lack of clarity in the steps you are following and your general process. You need to look up descriptive studies and the use of semi structured interviews and then list out the steps from start to finish. DO NOT include the interview questions. Those are in the appendix. Please number the steps from 1-XXX in order. This is a road map for those wanting to mimic your study.
Trustworthiness
According to Polit and Beck (2021), trustworthiness, also known as the study’s rigor, is the level of confidence in the data collected, the interpretation of the data, and the methods adopted to enhance the quality of the study. It is necessary for researchers in any study to develop procedures and protocols to ensure that a study is worthy of being considered by the intended users. Guba & Lincoln (2018) state that trustworthiness entails transferability, confirmability, dependability, and credibility.
Credibility: Credibility is the most crucial criterion since it focuses on confidence in the truth of the research study (Polit & Beck, 2021).
Member Checking
The trustworthiness of results is the bedrock of high-quality qualitative research. Member checking, also known as participant or respondent validation, is a technique for exploring the credibility of results (Polit & Beck, 2021). Data or results are returned to participants to check for accuracy and resonance with their experiences. Member checking is mentioned as one in a list of validation techniques. This simplistic reporting might not acknowledge the value of using the method nor its juxtaposition with the interpretative stance of qualitative research. In this commentary, we critique how member checking has been used in published research before describing and evaluating an innovative, in-depth member checking technique, Synthesized Member Checking.
Thick Description
Define this and then describe how you will demonstrate it in your research.
Confirmability: is concerned with the degree of consistency of the findings and the probability of repetition (Polit & Beck, 2021).
Evidence
Define this and then describe how you will demonstrate it in your research.
Coding is Clear and Well Defined
Define this and then describe how you will demonstrate it in your research.
Dependability
Dependability refers to data stability over the study period and through different study conditions (Polit & Beck, 2021).
Member Checking:
involves a follow-up interview for the accuracy of the information obtained.
Peer Debriefing:
this is the process of working with one or more peers, an unbiased and independent person with no personal interest in the project, to enhance the validity of your research. You need to find three experts in the field (Ph.D. level, to review your findings and to make notes on the accuracy and any issues they see.
Transferability
Transferability can be defined in qualitative research as the degree to which the research results can apply or transfer beyond the bounds of the project (Polit and Beck, 2021). Transferability implies that the research study results can apply to similar situations or individuals. This is established by providing evidence that the research study’s findings could apply to other contexts, situations, times, and populations (Polit and Beck, 2021). The knowledge obtained in one context will be relevant in another, and investigators who conduct research in another context will be able to utilize certain concepts initially developed.
Sample Sufficiency
Qualitative researchers must often make decisions about anticipated sample sizes before data collection. Estimates are typically required for human subjects review committees, grant applications, and resource planning purposes. Once a study is underway or completed, researchers must evaluate whether the sample has been robust enough to address the research aims (Polit and Beck, 2021). The challenge is to find a sample that will produce thorough and meaningful findings while minimizing the unnecessary burden on participants and the expenditure of scarce resources such as time and research dollars (Polit and Beck, 2021). Currently, little guidance is available regarding what minimum sample size is needed to identify the themes and codes in an area of inquiry. In addition, the issue of sample sizes needed to reach theme and code saturation across different qualitative methodologies or data analysis approaches is understudied.
Thick Description
Thick description in this qualitative research focuses on making explicit patterns of cultural and social relationships and giving detailed descriptions and interpretations of the observations made. Since it adds personal information and meaning from people engaged in different behavior, the data collected through thick descriptions tend to be of great value. There is more to a thick description than just the surface appearance. The approach considers emotion, voice, social relationship, details, feelings, actions, and context to interpret the significance of events, behavior, and observation (Polit & Beck, 2021). The thick description will capture five critical details about cultural and social relationships based on events, behavior, and observation. The details are biographical, historical, interactional, situational, and relational (Polit and Beck, 2021). Given how researchers use this information to describe their qualitative research and analysis, a reader can quickly get a clear picture of the respondents’ lives.
Ethical Concerns
Ethical standards for the entire study include maintaining professional researcher-participant relationships. The participants’ privacy will be maintained through confidentiality and nondisclosure of personal information. Ensure correct interpretations and honest and open interactions. The researcher will ensure that ethics are a priority by respecting confidentiality and privacy throughout the research study and thus ensure observance of several ethical standards. Details of the nature of the interaction will be outlined in the research proposal. The researcher will protect participants by enhancing confidentiality by ensuring that no personal or sensitive information is disclosed to outsiders unless necessary. Participant’s personal information will be protected using secure information preservation methods, use of pseudonyms in publishing and disclosure, amendment of all biographic details, and complete removal of possible identifier components such as detailed descriptions of participants.
The researcher will also protect the participants by providing appropriate information to elicit freely given informed consent for participation and regarding data deposit, and data re-use limits to confidentiality. Protecting subjects will also entail clarifying issues such as persons authorized to access data and specifications of data applications (Sanjari et al., 2020). The researcher will only share confidential information with outsiders after ensuring that such disclosure does not have any potential harm to the participant.
Informed consent is also a critical part of ethics in qualitative research and research conducted in various fields (Sanjari et al., 2020). The researcher will avail the informed consent form to every participant in the initial communication regarding the nature of the research, the type of data required, the method of data collection, and how the data will be used. The researcher will use written and signed consent forms that participants will sign in the presence of a witness. Besides, the researcher will read the informed consent form to each participant before the interviews. The consent form for this study will outline the nature of the research, the potential roles of the participants, how the research results will be used or published, the objectives of the study, the researcher’s identity, the contribution of the study to improvements in the health policy, science, and society, and the presence, if any, of a financing body. The researcher will negotiate agreement terms with the participants in each study phase to address emerging issues.
The researcher will be present throughout the study period as a mediator between the concerned population and the study participants. After the interview, the researcher will provide the participants with a post-interview sheet where they can comment on their feelings and opinions regarding the interview and ways in which they think the study could be improved. Upon completion of the study, the researcher will conduct a debriefing process whereby comprehensive information regarding the study will be shared. The researcher will not engage in any form of deception and will only use the debriefing session to collect the participants’ views and thank the participants for taking part in the study.
Confidentiality
All participants will be protected from involuntary exposure. Also, vulnerable participants will have legal representation through an advocate who must be present throughout the study. The researcher clarified issues to participants, such as data application specifications and persons authorized to access data. Seek informed consent from all participants.
The researcher will ensure the maximum privacy of the participants. Any research that involves collecting, manipulating, and reporting data from human subjects must have checks and balances to ensure confidentiality. Confidentiality means the results of the data are maintained in a manner to prevent any inadvertent disclosure or identifiable information on the participants. Any research conducted using human subjects must maintain confidentiality.
First, the researcher will obtain approval from the Institutional Review Board (IRB) to get permission to use human subjects in the proposed research. Secondly, since the proposed research involves parents, they will each be given an informed consent form to sign to ensure voluntary participation. (Surmiak, 2018). Besides, the informed consent forms will elucidate the measures the researcher intends to take to ensure the confidentiality of the participants, research data, and findings (Walliman, 2018). The researcher will be the sole facilitator and data collector when collecting the data.
The researcher will use codes and pseudonyms in place of personally identifying information when taking notes during interviews and observation. Also, the researcher intends to secure the records, including the notes, recordings, and videos, using password-protected files and safe boxes until the end of the research study, after 5 to 7 years the data will be destroyed by deleting the files. Unless by consent, no personally identifying information will be used; instead, pseudonyms and codes will be used to maintain the subjects’ anonymity. Additionally, only the supervisor, two data analysis assistants, and the researcher will have access to the data. Still, the researcher intends not to transfer the collected data outside the country. Limiting unauthorized access, maintaining anonymity, and being careful with the collected data will enable the researcher to maintain confidentiality.
Data analysis
Qualitative data analysis will be through a six-phase thematic analysis technique developed by Braun and Clarke, which involves initial coding, theme identification, evaluation, review of the identified themes, theme naming, and definition and report production (Vogt et al., 2021). The first step will entail familiarizing with the data through transcribing the data, reading and re-reading the findings, and noting the initial codes (Labra et al., 2019; Nowell et al., 2018). The second phase will entail the generation of initial systems systematically across the data set and the collation of the data that is relevant for each code. The third step requires searching for themes by collating the codes into themes. It also involves gathering all data relevant to a specific theme (Labra et al., 2019) (Nowell et al., 2018). In the fourth stage, the researcher will review themes by checking whether they work with the coded extracts, the thematic map, and the data sets. The second last phase entails defining and naming the themes to refine the findings further.
Finally, the researcher will produce a report by selecting relevant extracts, analyzing, and discussing the themes, and relating the findings to past literature and the research question (Nowell et al., 2018). Theme identification will be made across interviews in the initial phase to maintain consistency. A search for similar themes will follow this by analyzing the available data (Nowell et al., 2018). Common themes in collected data will guide the researcher’s generalizations and conclusions in the final stage. Data will be transcribed, and findings will be read and re-read while noting all initial codes. Thematic patterns will be developed and attached to the research codes. The thematic analysis offers a flexible means to get detailed yet sophisticated data to support a study’s questions or hypothesis. It is also easy and cheap to conduct compared to other qualitative data analysis approaches (Nowell et al., 2018; Labra et al., 2019). It helps get the perspectives or points of view of the research participants and generate generalizations. Finally, thematic analysis helps summarize the features of long data sets through a structured data analysis method. The thematic analysis approach is easy and cheap (Hammarberg et al., 2018).
Summary
The critical research question relates to the challenges or barriers to access to quality and continuous healthcare services by Latino and African American parents with ASD kids. Some variables or themes of the researcher’s focus will be the barriers to access, such as socioeconomic, racial, and geographical barriers. The perception of race and the contribution of culture in mediating the access and seeking of healthcare by the parents will also explore. To achieve its purpose of answering the questions and its primary objective, the research will take a qualitative approach. Qualitative research enables the researcher to be part of the research, study the participants, and experience the phenomenon under research either directly or indirectly. In line with the qualitative approach, the proposed study will utilize a descriptive research design study approach that uses interviews and observation as data collection methods. The collected data will collect through a six-step approach to thematic analysis, which will allow for the grouping of specific themes to answer the research questions. The researcher intends to engage 10 participants who will sample using the criterion-sampling approach.
The researcher is also aware of the ethical issues in research. To ensure the research adheres to ethics, the researcher will seek approval from the IRB. The researcher will also write to the four agencies to be involved in the study. Furthermore, the researcher will consider the participants’ anonymity, privacy, and confidentiality. The researcher will use codes or pseudonyms to maintain anonymity and confidentiality when collecting and reporting data. Besides, the researcher will maintain a positive researcher-participant relationship. Still, the researcher will ensure that the vulnerable participants have representation and that each participant signs an informed consent. The successful collection, cleaning, and analysis of data will succeed by reporting the research findings. In chapter 4, the researcher will present the results of the qualitative data analysis, including the themes to answer the main research question.
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Appendix A
Participant Informed Consent Form
Informed Consent Form
1. Introduction and Purpose of the Study: Challenges facing Black and Latino parents of Children with Autism Quality Care
2. Description of the Research: The research appropriately addresses the subjective nature of a problem, and the varying experiences participants have, allowing us to present the findings in a way that directly reflects the research questions.
3. Subject Participation: There are no limitations on the age or occupation of the Black and Latino parents.
4. Potential Risks and Discomforts: No known Risks, but if they arise, they will be addressed by calling 911 or referring to the mental health clinic.
5. Potential Benefits: Participants in this study may better understand additional treatment methods that enable individuals to experience and increase their overall sense of well-being.
6. Confidentiality: All information taken from the study will be coded to protect each subject’s name. No names or other identifying information will be used when discussing or reporting data.
7. Compensation: Subjects will not be compensated for participation in this study.
8. Voluntary Participation and Authorization: Your decision to participate in this study is entirely voluntary. If you decide not to participate in this study, it will not affect the care, services, or benefits to which you are entitled.
9. Withdrawal from the Study and/or Withdrawal of Authorization
If you decide to participate in this study, you may withdraw from your participation at any time without penalty.
10. Cost/Reimbursements: There is no cost for participating in this study. The investigators will not reimburse any medical expenses from participating in this study.
Appendix B
Screening Instrument
Appendix C
Interview Guide
Appendix D
Semi-Structured Interview Questions
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