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Description
Autism Spectrum Disorder (ASD) holds potential for significantly impacting the primary caregiver and family, as well as the child with ASD. In particular, sleep problems occur frequently among children with ASD, and their poor sleep may negatively affect that of their caregivers. Health-related quality of life (HRQoL) and Family Quality of Life (FQoL) are salient indices of caregiver and family well-being. This pilot study explored associations between family caregiver sleep problems and caregiver sense of coherence (SOC) or coping on HRQoL and FQoL. Additionally, this study examined relationships between child sleep and behavior problems on caregiver sleep and well-being.
Sixty-two family caregivers of children with ASD (M =7.61, range: 6-11 years old) participated in this survey study. Participants provided demographic information and completed measures of HRQoL, FQoL, caregiver sleep, SOC, parental stress, child sleep, and child behavior.
Caregivers with longer sleep duration reported better mental health and better FQol. Caregivers who reported insomnia symptoms, non-restorative sleep, and insufficient sleep were more likely to report poorer mental health than caregivers who did not report these sleep disorder symptoms. A stronger caregiver SOC was associated with lower caregiver stress, better mental health, and better FQoL. Significant relationships were found between shorter caregiver sleep duration or sleep disorder symptoms (i.e., difficulty staying asleep, early morning awakening, insufficient sleep) and greater child sleep problems. Moreover, short sleep duration or insufficient sleep among caregivers was significantly associated with greater parenting stress. Notably, biological parents with Restless Legs Syndrome (RLS) had children with more restless sleep and higher rates of some behavior problems.
There are a number of potential connections between sleep problems of children with ASD and sleep problems of their caregivers that are likely rooted in genetic, environmental, socio-economic, and behavioral factors. Interventions for sleep problems must address the context of the family and consider that sleep problems may be common to the caregiver and the child. The results of this study support findings from many prior studies and point to salient variables for future research and interventions to promote healthy caregiver sleep.
Sixty-two family caregivers of children with ASD (M =7.61, range: 6-11 years old) participated in this survey study. Participants provided demographic information and completed measures of HRQoL, FQoL, caregiver sleep, SOC, parental stress, child sleep, and child behavior.
Caregivers with longer sleep duration reported better mental health and better FQol. Caregivers who reported insomnia symptoms, non-restorative sleep, and insufficient sleep were more likely to report poorer mental health than caregivers who did not report these sleep disorder symptoms. A stronger caregiver SOC was associated with lower caregiver stress, better mental health, and better FQoL. Significant relationships were found between shorter caregiver sleep duration or sleep disorder symptoms (i.e., difficulty staying asleep, early morning awakening, insufficient sleep) and greater child sleep problems. Moreover, short sleep duration or insufficient sleep among caregivers was significantly associated with greater parenting stress. Notably, biological parents with Restless Legs Syndrome (RLS) had children with more restless sleep and higher rates of some behavior problems.
There are a number of potential connections between sleep problems of children with ASD and sleep problems of their caregivers that are likely rooted in genetic, environmental, socio-economic, and behavioral factors. Interventions for sleep problems must address the context of the family and consider that sleep problems may be common to the caregiver and the child. The results of this study support findings from many prior studies and point to salient variables for future research and interventions to promote healthy caregiver sleep.
ContributorsRussell, Maureen (Author) / Baldwin, Carol (Thesis advisor) / Quan, Stuart F (Committee member) / McClain, Darya (Committee member) / Smith, Christopher (Committee member) / Matthews, Nicole (Committee member) / Arizona State University (Publisher)
Created2014
Description
The purpose of this study is to identify the needs of older adults with Alzheimer's disease (AD) and related dementias (ADRD) admitted to a rehabilitation setting where they are expected to physically and mentally function to their optimal level of health. To date, no studies have identified the needs and concerns of ADRD patients in rehabilitation settings. The Needs-Driven Dementia-Compromised Behavior (NDB) Model, the researcher's clinical experience, and the state of the current scientific literature will help guide the study. An exploratory qualitative research approach was employed to gather data and discover new information about the ADRD patient's needs and related behavioral outcomes. The qualitative findings on the discrepancies and similarities in perceptions of ADRD patient needs were obtained by examining formal and informal caregivers' perceptions. The researcher recruited registered nurses and certified nurse assistants (RNs and CNAs, formal) and family/friends (informal) who have provided care to patients in inpatient rehabilitation facilities to participate in focus groups and individualized focused interviews. The data were collated and analyzed using a thematic analysis approach. The overarching theme that developed as a result of this approach revealed discordant perceptions and expectations of ADRD patients' needs between the formal and informal caregivers with six subthemes: communication and information, family involvement, rehabilitation nurse philosophy, nursing care, belonging, and patient outcomes. The researcher provided recommendations to help support these needs. These findings will help guide the development of nurse-lead interventions for ADRD patients in a rehabilitation setting.
ContributorsAllen, Angela Marie (Author) / Coon, David W. (Thesis advisor) / McCarthy, Marianne (Committee member) / Uriri-Glover, Johannah (Committee member) / Arizona State University (Publisher)
Created2014
Description
While the literature on caregivers of loved ones with Alzheimer's Disease and Related Disorders (ADRD) has continued to grow, the relationship of ethnicity and acculturation factors with regards to the coping strategies used by caregivers has not been extensively explored. The current study included participants from the Palo Alto site of the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project. The study examined differences in coping strategies between 140 non-Hispanic White, 45 less acculturated Latina, and 61 more acculturated Latina caregivers. Univariate and Multivariate Analysis of Variance, as well as post hoc analyses, were conducted to determine the differences among the three groups. Results indicated less acculturated Latina caregivers employ more avoidant coping strategies compared to non-Hispanic White caregivers. However, no differences were found among the other groups in their use of avoidance coping. Moreover, there were no differences found in the use of social support seeking, count your blessings, problem focused, and blaming others coping among the three groups. These findings have important implications for the design of culturally relevant psychoeducational and therapeutic interventions aimed towards meeting the individual needs of these three populations. In addition, the findings expand on the understanding of maladaptive coping strategies that may be potentially exacerbating caregiver distress among Latina caregivers.
ContributorsFelix, Vitae (Author) / Arciniega, Guillermo M (Thesis advisor) / Robinson-Kurpius, Sharon (Committee member) / Coon, David W. (Committee member) / Arizona State University (Publisher)
Created2011
Description
Latino parents of children with feeding disorders completed a survey about their experiences accessing support and the cultural competence of their providers. This work is a follow-up project to a presented American Speech and Hearing Association Conference poster (Stats-Caldwell, Lindsay, Van Vuren, 2017). That project revealed caregivers’ use of social media and indicated an overall perceived lack of support from providers. In the present survey, Latino caregivers identified the resources they consult and rated the level of helpfulness in addition to the types of supports they sought and received from these resources. Results indicate a considerable reliance on pediatricians in both frequency of consultation and helpfulness ratings. No significant difference was seen between the frequency of consultation between pediatricians, speech-language pathologists and other service providers. No significant difference was found in the helpfulness ratings between speech-language pathologists and topic-specific social media pages, nor speech-language pathologists and grandmothers. Participants indicated reliance on social media for informational resources. The influence of social media is discussed. The cultural implications of treating this population are also reviewed.
ContributorsVan Vuren, Katherine Ann (Author) / Azuma, Tamiko (Thesis advisor) / Scherer, Nancy (Thesis advisor) / Helms-Tillery, Kate (Committee member) / Arizona State University (Publisher)
Created2018
Description
ABSTRACT
This qualitative descriptive study described caregiver recognition of personal and social contextual resources guiding purposeful participation in self-care and well-being. This research builds on health empowerment theory, which conceptualizes health empowerment as an inherent, relational and ongoing process, expressive of health patterning of well-being (Shearer, 2009). By 2060, Americans 65 years and older will number nearly 98 million, more than double that in 2013. The number of older adults aged 85 and older will double from 6 million in 2003, to 14.6 million by 2040 (Health & Human Services, 2014). Sixty-five million adults serve as informal caregivers, many themselves suffering from chronic conditions (National Alliance for Caregiving & AARP, 2009). Current research has examined the burden of caregiving, but little is known about caregiver strengths and resources that foster personal self-care and well-being. Twenty-one older adult informal caregivers participated in focus groups or individual interviews. Length of time as caregivers ranged from one year to more than ten years; 24% of the participants were men. Seventy-six percent of the participants reported having one or more chronic condition. Themes generated from qualitative content analysis provided a basis for validating and extending the health empowerment theory among older adult informal caregivers. Across participants, empowerment reflected recognition of strengths and resources, as well as growth consistent with valued goals facilitating new health patterns and well-being. The health empowerment theory perspective provided a relevant basis for theory-based intervention focused on promoting strengths, abilities and potential among older adults, limiting vulnerability to diminished health and well-being.
This qualitative descriptive study described caregiver recognition of personal and social contextual resources guiding purposeful participation in self-care and well-being. This research builds on health empowerment theory, which conceptualizes health empowerment as an inherent, relational and ongoing process, expressive of health patterning of well-being (Shearer, 2009). By 2060, Americans 65 years and older will number nearly 98 million, more than double that in 2013. The number of older adults aged 85 and older will double from 6 million in 2003, to 14.6 million by 2040 (Health & Human Services, 2014). Sixty-five million adults serve as informal caregivers, many themselves suffering from chronic conditions (National Alliance for Caregiving & AARP, 2009). Current research has examined the burden of caregiving, but little is known about caregiver strengths and resources that foster personal self-care and well-being. Twenty-one older adult informal caregivers participated in focus groups or individual interviews. Length of time as caregivers ranged from one year to more than ten years; 24% of the participants were men. Seventy-six percent of the participants reported having one or more chronic condition. Themes generated from qualitative content analysis provided a basis for validating and extending the health empowerment theory among older adult informal caregivers. Across participants, empowerment reflected recognition of strengths and resources, as well as growth consistent with valued goals facilitating new health patterns and well-being. The health empowerment theory perspective provided a relevant basis for theory-based intervention focused on promoting strengths, abilities and potential among older adults, limiting vulnerability to diminished health and well-being.
ContributorsBlank, Laura Jeanne (Author) / Fleury, Julie (Thesis advisor) / Kommenich, Pauline (Committee member) / Belyea, Michael (Committee member) / Kennedy, Teri (Committee member) / Arizona State University (Publisher)
Created2018
Description
Hematopoietic stem cell transplantation (HSCT) is a unique but intense procedure used to save the lives of patients with hematopoietic malignancies. However, patients and caregivers undergoing HSCT can experience prolonged psychological distress due to an intense and distinctive transplant process. Types of psychological distress include anxiety, depression, social isolation, and post-traumatic stress disorder. Although this a significant healthcare problem, limited research has been conducted within the HSCT patient and caregiver population to investigate ways to improve their mental health. The purpose of this study was to examine the effects of an educational video intervention about post-transplant recovery in decreasing emotional distress and promoting emotional well-being in HSCT patients and caregivers. This pilot study utilized a quantitative single-group pretest-posttest design to examine the effect of educational videos on participant's emotional well-being. Four educational videos were developed using information gathered from several reliable bone marrow transplant and cancer websites. A convenience sampling method was used to recruit HSCT patient and caregiver participants. Eleven Caucasian, English-speaking individuals (6 patients, 5 caregivers; 54.5% female; M age= 43.7 years) across the United States were enrolled in the 60-90 minute online intervention. Participant responses were measured using pretest and posttest questionnaires. Results from the study found that the educational videos were effective in decreasing levels of depression and anxiety. Implications for nursing practice include the need to educate HSCT patients and caregivers about transplant recovery to decrease emotional distress. This study demonstrates the impact post-transplant education has on decreasing depression and anxiety in HSCT patients and caregivers.
ContributorsBosselman, Kate Elizabeth (Author) / Kim, Sunny (Thesis director) / Lee, Rebecca (Committee member) / Arizona State University. College of Nursing & Healthcare Innovation (Contributor) / Barrett, The Honors College (Contributor)
Created2016-12
Description
The purpose of this study is to understand and explore the perspectives of caregivers of children receiving mental health services in the Southwest. The data collected examines areas of caregiver satisfaction of services including, perceived barriers and agency’s ability to effectively apply the System of Care model’s core values. Participants (N=100) were interviewed using the System of Care Practice Review, Revised. Data results include descriptive quantitative analysis, correlation and means comparisons, and thematic analysis of qualitative responses. The research indicates that as a whole, caregivers are satisfied with child mental health services. Data suggests that providers should continue to strive for improvement and excellence in several areas of service, including intervention effectiveness, family participation, cultural competence, communication and interpersonal relationships.
ContributorsSchackart, Audrey Michelle (Author) / LeCroy, Craig W. (Thesis advisor) / Williams, Lela R (Committee member) / Sangalang, Cindy C (Committee member) / Arizona State University (Publisher)
Created2015
Description
Health and healing in the United States is in a moment of deep and broad transformation. Underpinning this transformation is a shift in focus from practitioner- and system-centric perspectives to patient and family expectations and their accompanying localized narratives. Situated within this transformation are patients and families of all kinds. This shift's interpretation lies in the converging and diverging trails of biomedicine, a patient-centric perspective of consensus between practitioner and patient, and postmodern philosophy, a break from prevailing norms and systems. Lending context is the dynamic interplay between increasing ethnic/cultural diversity, acculturation/biculturalism, and medical pluralism. Diverse populations continue to navigate multiple health and healing paradigms, engage in the process of their integration, and use health and healing practices that run corollary to them. The way this experience is viewed, whether biomedically or philosophically, has implications for the future of healthcare. Over this fluid interpenetration, with its vivid nuance, loom widespread health disparities. The adverse effects of static, fragmented healthcare systems unable to identify and answer diverse populations' emergent needs are acutely felt by these individuals. Eradication of health disparities is born from insight into how these populations experience health and healing. The resulting strategy must be one that simultaneously addresses the complex intricacies of patient-centered care, permits emergence of more localized narratives, and eschews systems that are no longer effective. It is the movement of caregivers across multiple health and healing sources, managing care for loved ones, that provides this insight and in which this project is keenly interested. Uncovering the emergent patterns of caregivers' management of these sources reveals a rich and nuanced spectrum of realities. These realities are replete with opportunities to re-frame health and healing in ways that better reflect what these diverse populations of caregivers and care recipients need. Engaging female Mexican American caregivers, a population whose experience is well-suited to aid in this re-frame, this project begins to provide that insight. Informed by a parent framework of Complexity Science, and balanced between biomedical and postmodern perspectives, this constructivist grounded theory secondary analysis charts these caregivers' processes and offers provocative findings and recommendations for understanding their experiences.
ContributorsKrahe, Jennifer Anne Eve (Author) / Lamb, Gerri (Thesis advisor) / Evans, Bronwynne (Committee member) / Larkey, Linda (Committee member) / Arizona State University (Publisher)
Created2013
Description
Children and youth in foster care experience poor K-12 educational outcomes compared to their peers without foster care histories. Child welfare and school professionals hold shared responsibility for ensuring their educational well-being based on federal policies and role expectations. However, professionals often experience challenges in effectively collaborating with one another to support the educational of children and youth in foster care. Guided by ecological systems and critical theory, this mixed methods explanatory sequential design explored the facilitators and barriers that child welfare professionals, school professionals, and professional caregivers viewed as promoting and hindering effective interprofessional collaboration between child welfare and school professionals. The quantitative phase involved the analysis of surveys (N = 136) collected from child welfare professionals, school professionals, and professional caregivers in an urban county in the Southwest. In the qualitative phase, interviews and focus groups were conducted with a subsample of survey participants (N = 22). Facilitators of interprofessional collaboration included: centering the best interests of the child, opportunities and capacity to meaningfully engage, effective communication, positive and trusting relationships, being knowledgeable about the child, policies, roles, and systems, and empathy towards other professionals. Barriers of interprofessional collaboration included: competing priorities or agendas, unmanageable workloads and limited time, little to no timely communication, weak ties and mistrust, limited knowledge about the child, policies, roles, and systems, and biases towards professional caregivers and other professionals. The overall findings have multiple implications for social work practice, policy, research, and education to enhance collaboration between professionals to better serve children and youth in foster care.
ContributorsVillagrana, Kalah M. (Author) / Lietz, Cynthia A (Thesis advisor) / Lechuga-Peña, Stephanie (Committee member) / Wu, Qi (Committee member) / Arizona State University (Publisher)
Created2023
Description
Child sexual abuse is common in the United States, with an estimated 27% of girls and 5% of boys reporting experiencing child sexual abuse before the age of 18. Occurrences of sexual abuse are grossly underreported, if at all. Recently, researchers have looked more closely at children’s disclosure of sexual abuse and best practices to optimize the safety and well-being of the child. Identifying and acknowledging the reasons that encourage or discourage child sexual abuse disclosures can help victims disclose sooner, access treatment sooner, prevent additional sexual victimization, and safeguard others from harm. Although research exists on the forensic interview process for reporting child sexual abuse, this dissertation takes a unique approach to study children’s decisions to disclose sexual abuse during investigative interviews. Paper 1 aimed to systematically identify and describe the types of preparatory statements caregivers provided to children before forensic interviews. Paper 2 examined the association between caregivers’ preparatory statements and other factors that may impact disclosure rates. Paper 3 provided and encouraged the widespread adoption of an integrated, feminist-based ecological systems framework that guided this dissertation study from conceptualization to interpretive analysis. A Child Advocacy Center provided 322 child sexual abuse forensic interviews and intake paperwork from children and their caregivers. To meet the inclusion criteria, children had to be between 4 and 17 when they reported being sexually abused, possess language proficiency, and take part in forensic interviews regarding sexual abuse conducted by forensic interviewers between 2015 and 2018. The first paper used content analysis to explore and categorize the types of preparatory statements caregivers provided to children. The second paper used a stepwise regression analysis that integrated the preparatory statement results from Paper 1 and child characteristics. This dissertation's third paper proposed a conceptual framework using feminist and ecological systems theory to approach child sexual abuse research. The main takeaway from this study is that children were more likely to make a formal disclosure if their caregiver provided transparent preparatory statements before a forensic disclosure.
ContributorsLawler, Siobhan M (Author) / Reed, Lauren A (Thesis advisor) / Stolzenberg, Stacia N (Committee member) / Messing, Jill T (Committee member) / Arizona State University (Publisher)
Created2023