Nancy Cheak-Zamora

• Doctor of Philosophy
• Professor (Assistant) at University of Missouri

Despite strides in reducing postsecondary enrollment disparities between students with and without disabilities, the transition to postsecondary education remains particularly challenging for students with autism spectrum disorder (ASD). These students encounter unique barriers that necessitate tailored support during the college application proces...

Purpose Autistic adults face significant barriers to employment. While caregiver and provider perspectives have informed transition programming to address these barriers, limited research has gathered insights directly from autistic adults. This study aimed to explore the experiences of autistic adults who completed an employment preparation progra...

Autistic adolescents and young adults face barriers to accessing health care, particularly during the pediatric-to-adult care transition. This study compared health care access, utilization, and provider interactions between rural and urban autistic adolescents and young adults. Autistic adolescents and young adults ( N = 180) aged 14–25 were recru...

Autistic adolescents and young adults in rural areas often experience more unmet medical needs than their urban peers, particularly during the health care transition, the process of moving from pediatric to adult health care. This study aimed to understand the health care transition experiences of autistic adolescents and young adults (14–25 years...

Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot stu...

Objective: Access to health care transition (HCT) services has been included in national surveys for 20 years. While dozens of studies have assessed HCT, no study has examined the model fit of the HCT questions or psychometric properties of the measure. We utilized National Survey of Children's Health (NSCH) data to develop and test a comprehensiv...

Background: Autistic adults have high rates of co-occurring health conditions, suicide, and premature mortality, yet often experience health care barriers and poor health outcomes. A better understanding of the health care needs and experiences of autistic adults is essential for improving the health care system and patient experience. Methods:...

Problem Youth with special health care needs often experience significant difficulty transitioning into adult health care services and adult life. Services supporting youths' transition from pediatric to adult health care (Health Care Transition (HCT)) have been a priority for nearly 30 years to improve this transition process. The Health Resources...

Introduction: Half a million autistic youth will enter adulthood over the next decade. Support services to help youth successfully transition into adulthood are limited and not tailored to the autistic youth and young adult's needs. This study utilized qualitative methods to understand how autistic young adults experience and cope with stress duri...

Background Adults on the autism spectrum are at high risk for co-occurring conditions and poor health outcomes, yet they often experience significant unmet healthcare needs. A better understanding of potential gaps and barriers is essential for improving the healthcare system. This mixed-methods study was conducted to better understand the healthca...

Objective: Quality of life, independence, and employment outcomes are poor for young adults with autism spectrum disorder (YA-ASD). This study explored the desires and experiences of YA-ASD as they transition into adulthood. Methods: Fifteen YA-ASD, age 18 to 25 years, were recruited from autism spectrum disorder centers, participant registries,...

Background: Cats are a common companion animal (CA) in US households, and many live in families of children with autism spectrum disorder (ASD). The prevalence of ASD is one in 54, and many children have behavior challenges as well as their diagnostic communication disorders. Objective: Benefits of CAs for children with ASD have been identified, bu...

Background Young adults with autism spectrum disorder’s (YA-ASD) ability to manage their healthcare needs is imperative as they transition to adult care. Method This study evaluated YA-ASD’s knowledge and care-seeking behavior for Physical and Mental Health (PH/MH) conditions. Caregivers (n = 501), of YA-ASD 16–25 years completed surveys. This stu...

Little is known about Young adults with Autism Spectrum Disorder (YA-ASD) health, healthcare and safety needs. This study describes the validation of a health care transition measure for YA-ASD, the Health-Related Independence (HRI). We collected data from caregivers (n = 490) at five Autism Treatment Network sites and compared the psychometric pro...

Purpose The diagnosis of Autism Spectrum Disorder (ASD) occurs in one in 54 children and companion animals (CA) are common in families of children with ASD. Despite evidence of CA ownership benefits for children with ASD, little is known about cats. The purpose was to explore the impact of shelter cat adoption by families of children with ASD. Des...

Objective: Despite their complex health care needs, transition-aged youth diagnosed with autism spectrum disorder (TAY-ASD) receive few transition services and describe difficulty finding adult providers. A 12-week primary care provider (PCP) training was developed to improve the delivery of transition services for TAY-ASD [Extension for Community...

Background: Becoming an adult comes with education, work, living, and health-related transitions. Health care transition (HCT) services help adolescents prepare for a smooth transition to adult care, ensure health insurance retention, and promote adolescents' independent management of health care and life needs. Lack of HCT services can result in...

This study examined rates of and contributing factors to self-determination among young adults with autism spectrum disorder. Caregivers of young adults with autism spectrum disorder, 16–25 years, from five Autism Treatment Network sites completed surveys about their young adults’ transition experiences including the American Institutes for Researc...

Little research exists to describe sexual and romantic relationships among adolescents and young adults with autism spectrum disorder (ASD) from their perspectives. Sexuality and intimacy are developmentally important and influence health and quality of life for all adolescents and young adults, including those with ASD. This study explored and com...

Transition-age youth and young adults with autism spectrum disorder have complex healthcare needs, yet the current healthcare system is not equipped to adequately meet the needs of this growing population. Primary care providers lack training and confidence in caring for youth and young adults with autism spectrum disorder. The current study develo...

Objectives: Caregivers play a critical role in educating their youth with autism about sex and relationships; yet, we know little about caregivers' ability to deliver this support, youth's perspectives, or the congruence of youth and caregiver experiences. To help fill this gap, we explored and compared the perspectives of caregivers and their you...

Transitioning into adulthood can be challenging and stressful process for youth living with autism spectrum disorder (ASD). Few studies have examined the perspectives of youth with ASD during the transition to adulthood. Using the participatory methodology of photovoice among eleven (N=11) young adults with ASD ages 18-23, this study’s aim was to i...

Background : Adolescents with autism spectrum disorder (ASD) experience challenges achieving independence. Few studies assess both adolescents and caregivers' needs as adolescents transition to adult health care. This study explored and compared the health-related independence experiences of 27 adolescents with ASD and their caregivers. Caregivers...

Youth with Autism Spectrum Disorder (ASD) experience significant difficulties assuming adult responsibilities and achieving independence. Little is known about their desire or ability to manage their own finances. This study explored the financial circumstances, money management skills, and desires for financial independence among 27 youth with ASD...

Background The Maternal Child Health Bureau identified six indicators of quality and accessibility essential in achieving coordinated, family-centered, community-based care for children with special healthcare needs (CSHCN). Previous research examined associations between children with single conditions and individual indicators. We sought to ident...

Background and Purpose Much of the research focused on youth living with Autism Spectrum Disorder (ASD) has emphasized deficits related to social interactions, communication skills, repetitive behaviors, and comorbid conditions. This study utilized an innovative research methodology, Photovoice to describe the lived experience of youth diagnosed wi...

This chapter describes the application of photovoice, a method that enables people to identify, share, and address their lived experiences with photographs and discussions, to HIV/AIDS and Autism Spectrum Disorder (ASD) research. The use of photovoice has expanded tremendously over the last decade. The case studies in this chapter highlight the var...

Design and methods: Eleven young adults captured their experiences growing up with ASD via images, and participated in three group photo discussions, an individual photo interview, and a photo exhibit. Qualitative data for analysis included session transcripts and photographs. We used strategies of theme analysis to understand participants' experi...

Objective: Youth with autism spectrum disorder (ASD) experience significant challenges transitioning to adulthood. We utilized Photovoice to better understand youth's desires for and perspectives on becoming adults. Method: Youth with ASD (N = 11) photographed their life experiences, attended group and individual photo-sharing and discussion ses...

Youth with autism spectrum disorder (ASD) experience significant challenges transitioning to adulthood, but we have few firsthand accounts of these issues due to youth’s limited participation in research. In this study, we utilized a qualitative methodology, Photovoice, to understand youth’s perspectives on becoming adults. We recruited 11 youth wi...

The transition into adulthood can be stressful and challenging for adolescents with autism spectrum disorder (ASD) and their caregivers. Few studies have examined the perspectives of adolescents with ASD and their caregivers during the transition to adulthood. This qualitative study utilized the method of four focus groups with 19 caregivers and 13...

Background Adolescents with autism spectrum disorder (ASD) face many challenges as they age into adulthood. Because little is known about the perspectives of caregivers and youth during this critical transition, this study explored their social, educational, and vocational needs and experiences.Method Two focus groups were conducted with youth with...

Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health car...

The Maternal Child Health Bureau identified six indicators essential in achieving coordinated, family-centered, community-based care for children with special healthcare needs (CSHCN). Current studies examine only one indicator and focus on individual conditions limiting understanding of overall quality of care. Using data from the 2009-10 Nation...

Children with autism spectrum disorders (ASD) experience difficulty accessing health care services. Using parent-reported data from the 2009-2010 National Survey of Children with Special Health Care Needs, we examined whether having a medical home reduces unmet need for specialty care services for children with ASD (n = 3,055). Descriptive statisti...

Objective: Little is known about accessibility to health care transition (HCT) services (HCT) for youth with autism spectrum disorders (ASD). This study examined how often youth with ASD receive HCT services and how access varied by individual, family, and health system characteristics. Method: Questionnaires were completed by 101 parents of you...

The purpose of this study was to examine the relationship between having access to a medical home and unmet needs for specialty care services for children with autism spectrum disorders (ASD). Parents of children enrolled in a national autism registry were invited to complete an online Access to Care Questionnaire. The resulting sample consisted of...

Little is known about accessibility to health care transition (HCT) services for youth with autism spectrum disorder (ASD). This study expands our understanding by examining the receipt of HCT services in youth with ASD compared with youth with other special health care needs (OSHCN). We used the 2005-2006 National Survey of Children with Special H...

As demographics shift to include more elderly populations and those living with chronic medical conditions, costs for health care services continue to escalate. As a result, health care systems around the world increasingly struggle to provide cost-effective, coordinated, and quality health care to those they serve. Significant policy, procedural,...

Approximately 500,000 youth with disabilities make the transition from a pediatric to an adult provider each year. Healthcare transition services (HTS) assists this progression and enhances independence for youth with disabilities. However, there are no studies examining the prevalence of HTS among youth with Autism Spectrum Disorder (ASD). The pur...

Although all adolescents experience obstacles while transitioning into adulthood, youth with autism spectrum disorder (ASD) face endless difficulties. Given the lack of data on transitioning, we conducted focus groups with youth with ASD and their parents, to better understand needs and barriers. Giving youth and their parents an opportunity to sha...

The growing number of women living with HIV/AIDS (WLH/A) underscores the importance of effective prevention programmes to help women promote their own health and protect their partners from HIV transmission. We elicited WLH/A perspectives about their health promotion and prevention programme needs in a photovoice project called Sharing Stories. Pho...

Authors conducted a systematic review of the literature to determine whether differences exist for children with ASD versus children without ASD in the utilization, accessibility, and cost of their health care services. Population and outcome variables of interest were used to search for articles in Medline and PsycInfo databases. Thirteen studies...

Background: Parents of children with autism spectrum disorders (ASD) describe numerous problems accessing specialized services and family supports compared to other children with special health care needs (CSHCN) (Kogan et al., 2008; Krauss, Gulley, Sciegaj & Wells, 2003). These challenges often result in family strain due to high out-of-pocket cos...

Background: Approximately 500,000 children with special health care needs (CSCHN) make the transition from a pediatric to an adult provider each year (Reiss & Gibson, 2002). The need for transition services for this population puts a strain on the health care system, as well as the affected child and their families. Unfortunately, we know little...

The majority of literature on uninsured spell duration and the dynamics of uninsurance has been drawn from the 1996-1999 Survey of Income and Program Participation (SIPP). Furthermore, little is known regarding the effects of the definition of uninsurance duration estimates (e.g. total length of uninsurance versus uninsurance spell length) on the c...

Purpose: Changes in the health care environment have brought challenges and opportunities to the field of psychology. Practitioners have been successful in modifying service models to absorb losses of financial support for behavioral health care, due to managed care and public policy changes, while simultaneously managing the growing need for these...

Evaluate the reliability and validity of the Medical Outcomes Study Short-Form version 2 (SF-12v2) in the 2003-2004 Medical Expenditure Panel Survey (MEPS). Data were collected in the self-administered mail-out questionnaire and face-to-face interviews of the MEPS (n = 20,661). Internal consistency and test-retest reliability and construct, discrim...