1,720,982 research outputs found
The Social Determinants of Health for African American Mothers Living with HIV
No full textProblem: The disparate health outcomes of African American mothers living with HIV functions at the intersection of gender-, race-, and class-inequality; HIV-related stigma; and motherhood, requiring multidimensional approaches to address the complex social and economic conditions of their lives, collectively known as the social determinants of health. African American women suffer significantly higher HIV infection rates and tend to die earlier from their infection than their White counterparts. Poverty is a significant precipitating factor for HIV infection and African American women are disproportionately poorer than other subpopulations in the United States. HIV-related stigma is linked to poorer mental and physical health outcomes across a broad range of demographic profiles. Being a mother adds an extra layer of social complexity to the lives of women living with HIV. This dissertation was designed to develop knowledge on the social determinants of health for African American mothers living with HIV by describing their social location at the intersection of gender-, race- and class – inequality; HIV-related stigma; and motherhood and exploring how their unique social identity influences their health-related experiences.Methods: Using data from a literature review on intersectional approaches and other frameworks for examining vulnerable populations, an intersectional model for the study of the social determinants of health for African American mothers living with HIV was constructed. A pilot study exploring the methodological issues and ethical challenges of using photo elicitation with a highly stigmatized social group of women was conducted. The intersectional model and pilot study findings were then used to guide a qualitative descriptive study using storyline graphs, photo elicitation and in-depth qualitative interviewing as methods for exploring the intersection of the social determinants of health for eighteen (18) African American mothers living with HIV. Content, vector and frame analyses were used to describe the intersection of social determinants and identify potential process and structural level interventions. Results: Findings from the pilot study include best practices for using visual methods with a highly stigmatized and potentially vulnerable group of women. Findings from the qualitative descriptive study include six additional social determinants of health - social support, religiosity, animal companions, physical environment, transportation and housing - not initially included in the conceptual model, a case for strength-based approaches, intersecting social determinants functioning as systems of oppression and the heterogeneous and fluid social locations as framed from the mother’s perspective. Three frames of social location for African American mothers living with HIV were proposed – emancipatory, situational, and internalized – as well as potential health implications and interventions. Each of the findings add to the literature on the configuration of intersecting social determinants health relevant to African American mothers living with HIV, expand the proposed intersectional model and help to generate hypotheses needed for intervention studies.</p
Family Communication between Parents and AYAs in the Childhood Cancer Context
No full textProblem and Purpose: Adolescents and young adults (AYAs) with cancer are a population with unique age-specific characteristics and often neglected therapeutic needs. Specifically, Korean AYAs with cancer reported greater level of stress that comes from unique cultural and societal characteristics, but there is a lack of support systems to help their healthy adjustment to the cancer diagnosis. Family communication allows family members to share thoughts and feelings openly and clearly with one another, particularly regarding stressful situations. Studies have shown the importance of family support and communication for maintaining psychological well-being in pediatric patients with cancer, yet despite its pivotal role, little attention has been paid to the parent-adolescent communication in the childhood cancer context. We conducted an integrative literature review on facilitators and barriers to parent-child communication in the childhood cancer context and found that most children, AYAs and their parents were struggling to engage in family communication because of their fear related to expected negative outcomes by sharing sensitive topics, such as emotional harms to each other. In addition, they were rarely aware of the potential benefits from engaging in family communication. However, we also found that there was a lack of research on parent-adolescent communication in the Korean childhood cancer context. This gap in the literature makes us to conduct these dissertation studies with aims of: (1) understanding the Korean parent-adolescent communication experiences in the childhood cancer context, and (2) exploring the potential benefits from engaging in parent-adolescent communication in the Korean childhood cancer context.Methods: The overall dissertation studies were conducted in Korean. First, a qualitative descriptive design study with a sample of 10 AYAs with cancer and their parents was conducted to explore Korean adolescents’ and their parents’ experiences related to therapeutic and emotional communication in the childhood cancer context. Individual semi-structured interviews were conducted in Korean. The interview transcripts were translated and analyzed using a traditional content analysis, generating themes. Based upon the findings, we designed a cross sectional, descriptive, correlational design study to determine the relationship between engaging in parent-adolescent communication and use of positive coping in Korean AYAs, and the underlying mechanism. Data were collected from 144 AYAs aged 11-26, and their 73 parents, using a packet of self-administered questionnaires that included measures on sociodemographic and health history, parent-adolescent communication, family cohesion, hope, and uncertainty. The study obtained the needed institutional Review Board approvals from both Duke University and the Korean study site.Results: From the first, qualitative descriptive design study with Korean adolescents with cancer and their parents, we developed the overarching core theme of “I cannot share my feelings” as a synthesis of three main themes that emerged: (1) restricted topics that I can share; (2) being closer but lacking depth; and (3) effects of restricted topics oncoping. Contrary to our expectation that participants would avoid communication related to the cancer diagnosis, they reported no challenges in communicating about treatment or day-to-day management routines; however, consistent with prior findings, they often experienced challenges in communicating about emotions due to a desire to protect one another. Furthermore, this family communication challenge resulted in creating serious risks for ineffective coping. Therefore, we conducted the next proposed study to determine the relationship between engaging in parent-adolescent communication and use of courageous coping. From this correlational, descriptive design study, we found a significant relationship between engaging in effective family communication and use of courageous coping (confrontive, optimistic, and supportant), regardless of AYA’s gender, age, cancer treatment status, and the level of symptom distress in both cases of mother and AYAs (0.26,p=0.0024, R2=0.07, medium effect), and a father and AYAs (0.25,p=0.0042, R2=0.06, medium effect). Next, we also revealed that the family cohesion was a significant mediator of the relationship between family communication and use of courageous coping in case of communicating with both a mother and a father. For example, the effect of communication with mother on use of courageous coping was reduced and no longer statistically significant, after controlling for family cohesion (Model 1, 0.11,p=0.2753, partial r2=0.01, very small effect). Last, this finding suggested that uncertainty directly influenced hope, and hope then fully mediated the impact of family cohesion on use of courageous coping among Korean AYAs with cancer when communicating with a mother. Whereas, hope only partially mediated the impact of family cohesion on the use of courageous coping among Korean AYAs when communicating with a father. Therefore, we revealed that uncertainty in illness and hope mediated the relationship between family cohesion and courageous coping in Korean AYAs with cancer.Conclusion: Above all, in this dissertation study, we explored the Korean parent-adolescent communication experiences from the perspectives of Korean AYAs and their parents. The main finding from this study is that Korean adolescents with cancer and their parents struggle to share their emotional needs because of their fear related to the expected emotional harms and they hardly expect the benefits from engaging in family communication. The urgent needs to inform them of the benefits from engaging in family communication lead us to examine the relationship between engaging in parent-adolescent communication and use of courageous coping in the childhood cancer context. This study finding revealed the positive relationship between engaging in parent-adolescent communication and use of courageous coping among Korean AYAs and other mediating roles of family cohesion, uncertainty, and hope. This study highlighted the important role of family cohesion, decreased uncertainty, and increased hope in communicating with AYAs in the childhood cancer context to help their positive adjustment to cancer diagnosis by fostering their use of positive coping.Implications: The current study helped us to be able to understand the family communication experiences of Korean AYAs and their parents in the childhood cancer context and provided directions to guide development of future family communication model and interventions. However, several limitations also exist and provide direction for future research. First, the future study need to employ a longitudinal design study to help clearer understanding of Korean family communication experiences and the relationship between engaging in family communication and use of courageous coping among Korean AYAs with cancer. Secondly, future study with bigger sample size are necessary. Finally, although this study was conducted targeting Korean AYAs living in Korea, the study findings will provide good implications to USA health care providers taking care of Korean AYAs, broadly other Asian AYAs from similar cultural backgrounds.</p
Examination of Health Care Transition, Health Status, and Functional Outcomes Among Adolescents and Young Adults with Intellectual Disability
No full textAdolescence is a period marked by tremendous social, emotional and physical changes; however, adolescents and young adults (AYAs) with intellectual disability (ID), who must navigate this period with limitations in intellectual and adaptive functioning, face additional difficulties. Much remains unknown about their health care transition (HCT) experiences and their health and well-being as they transition into adulthood; therefore, this study examined the HCT, health status, and functional outcomes of AYAs with ID.This study incorporated both an individual and population approach to understand needs of AYAs with ID. First, within Chapter 1, a qualitative descriptive design study with semi-structured individual interviews with 16 parent participants was used. We utilized purposive sampling of parents with variation on race/ethnicity and AYA age, stage in transition, and condition; and we utilized content analysis. In Chapter 2, we developed a new method for identifying individuals with ID within large, population-level studies not targeted on ID. We used a secondary analysis of the de-identified, restricted-use National Longitudinal Study of Adolescent to Adult Health (Add Health) database representing 20,745 adolescents to develop a method for identifying individuals who meet criteria of ID. The Add Health ID Indicator was developed from the variables indicative of intellectual and adaptive functioning limitations available within the Add Health database. Through this method, we identified 441 AYAs with ID. Lastly, in Chapter, a descriptive, correlative study utilized the Add Health database and Add Health Indicator to examine the health status and functional outcomes among 254 AYAs with ID.Our study illuminates the need for (a) improved infrastructure to provide effective HCT and (b) partnerships to help integrate HCT support within other life course systems. Our results support the rationale for a noncategorical HCT-focused approach as well as a parent-peer, coach-facilitated intervention for bridging the gap between systems and meeting family needs. By examining the Add Health ID sample, we identified a decline in health status from adolescence to adulthood among the AYAs with ID, demonstrating that their transition to adulthood is a period during which prevention of obesity and interventions to improve health status should be targeted. The disability-, adolescent-, and family-related factors associated with health status and functional outcomes among AYAs with ID can inform further research, tailoring of interventions, and policies. Researchers can utilize the data-driven method we developed with commonly available data elements in nationally representative datasets to leverage existing rich data sets in order to identify individuals with ID. These data sets, including Add Health, hold significant potential for answering research questions, guiding policy, and informing interventions to improve the health of the ID population.</p
Parent and Provider Decision-Making for Infants with HIE
No full textHypoxic ischemic encephalopathy (HIE) is a serious birth complication of full term infants; 40-60% of affected infants die by 2 years or have severe disabilities. Infants with HIE often have a normal gestation and parents anticipate a healthy birth. HIE can be managed with aggressively with moderate hypothermia 6 hours of life and umbilical cord stem cell transplant are also available. Additional decision-making for these infants may include long-term developmental therapy, nutritional support, and respiratory support. However, who makes these decisions, what factors influence decision-making and the long-term impact of decision-making on parents and health care providers remains unknown. Therefore, the purpose of this study was to explore parental and health care provider decision-making for infants with HIE.A longitudinal case study design was used to study 11 cases of infants with HIE. Each case included the infant, the parent, and the infant's providers. Infant medical record data, interviews and questionnaires were used to collect data from infant birth through 6 months of age. Content analysis was used to analyze the interviews. Descriptive statistics were used with the questionnaires. Visualization techniques were used to search for patterns and trends in the assembled data. All infants required resuscitation and their treatment plans included aggressive care or aggressive and experimental care. The level of parental participation varied with in the first week of life depending on whether the infant was enrolled in experimental interventions plus aggressive care or only aggressive care. Parental hopefulness was lower in parents of infants who received experimental interventions, but the infants receiving experimental interventions were less critically ill than infants who received aggressive care only. Parental stress was also lower among parents of infants who received experimental interventions over the first 2 months of life. Parents were concerned about the short and long-term impact of HIE, few parents understood that even though their infant had appropriate developmental outcomes at 6-months that did mean that neurological damage occurred. However in one case of an infant, the neurological development became central to the parental decision-making for the infant. Parents became less hopeful as diagnostic examinations continued find more complex conditions that were individually not problematic for the parents, but when the complexity of the infant's illnesses continued to unfold, parents feared that too many complications existed for their daughter to have an acceptable quality of life. Yet, when parents broached the topic of transitioning from aggressive care to palliative care with providers, they were told that withholding/withdrawing treatment was not appropriate for the infant. Not discussing withholding or withdrawing treatment ultimately created conflict between parents and providers due to differences in opinions about the predicted neurological outcomes for the infant. The conflict led to distrust and parents regretted most decisions they made for their infant. Parental and provider decision-making is complex and many of the decisions within the 6-month trajectory were made within the first 6 hours of birth. Parents felt that the decision-making was appropriate in most cases, but the extent of the infant's injury remains unknown. How parents will evaluate the decision-making when the infant begins to miss developmental milestones is unknown. Results from this dissertation suggest that decision-making is a trajectory and decisions are not made in isolation. Implications for practice include discussing and educating parents during the first 6 months and later about developmental milestones and the importance of continuing therapy, even when the infant appears normal. Providers can also acknowledge to parents, up front, that the extent of the neurological injury is unknown and different providers may have different opinions about the long-term effects. By acknowledging these differences, providers can begin discussing the treatment options with parents and educating them about the specific needs of their infant.</p
Phenotyping Complex Symptoms in Adults with Multiple Sclerosis
No full textMultiple Sclerosis (MS) is an incurable chronic neurodegenerative autoimmune disease of the central nervous system with a complex symptom profile. An estimated 2.5 million people in the world have MS, and it is the most common cause of non-traumatic disability in young adults. A better understanding of symptoms for adults with MS may assist in the assessment, treatment, management, and prevention of impairment to improve quality of life and maintain desired functionality. The purpose of this dissertation is to provide the foundation for my program of research on the symptom experiences of people with Multiple Sclerosis (Duke Health IRB Pro00073408). This work will explore MS symptom phenotypes, including clusters of early MS-specific symptoms and pervasive symptom trajectory typologies. The resulting symptom clusters and trajectories will describe MS symptom experiences and inform my future research regarding symptom management and prevention of adverse symptoms in adults with MS. This dissertation is organized into five chapters. Chapter one introduces the research problem, background, and theoretical framework/underpinning. Chapter two provides a literature review exploring the symptom-informed diagnosis experience of people with MS. Chapter three explores which early MS symptoms occur together using an exploratory factor analysis to cluster MS-specific symptoms from the first MS attack according to possible latent factors. Chapter four examines trends in longitudinal pervasive symptom trajectory typologies classified by latent class growth analysis. Chapter five is the synthesis of the findings from each chapter and implications for practice and future research.This better understanding of symptom clusters and trajectories for MS will aid in the development of a more detailed understanding of symptoms, with the potential to incorporate additional data like genomics, imaging, and other biomarkers to aid in the diagnosis and treatment of MS and its associated symptoms, as well as to better understanding the biological underpinning of symptoms. This research was funded by Duke University School of Nursing, NIH National Institute of Nursing Research (NINR) (F31NR017121), Jonas Center for Nursing Excellence (Jonas V Veterans Healthcare Scholar), Duke University Summer Research Fellowships (2015, 2016, and 2017), Duke University Graduate School COVID-19 Funding Extension (2020 and 2021). </p
Health Care Transitions in Sickle Cell Disease
No full textOver the past three decades, advances in the care for children with sickle cell disease (SCD) have increased their life expectancy and necessitated their transition to adult health care. However, there is a limited understating of health care transition in SCD and the impact it has on outcomes beyond perspective on and satisfaction with the process from the perspective of the adolescent and young adult (AYA) and their families. The purpose of this dissertation was to provide a better understanding of health care transitions in AYAs with SCD. This purpose was achieved through an examination of the state of the science on health care transition in AYAs with SCD, the challenges of shifting self-management from the parent to the adolescents with SCD prior to transition to adult care, and the patterns of health care utilization during transition and the factors associated with these patterns.Findings from our integrative review indicated that few studies examined health care transition in AYAs with SCD. Most of the research on health care transition in AYAs with SCD focused on individual, family support, and the health care domain, yet results are inconclusive. For example, there is evidence that parents were heavily involved in the AYA’s health care. Although this involvement was viewed as supportive by the AYA as well health care providers, it’s not clear how parental involvement and the parent-AYA relationship can be utilized to facilitate health care transition for the AYAs with SCD. In addition, very few studies examined health care transition outcomes or examined how AYAs utilize the health care system to meet their health care needs during transition. To further understand the parent-AYA relationship in managing SCD, we examined the shifting of management responsibility from the parent to the adolescent with SCD. Our findings indicated that shifting management responsibility is a critical and challenging process. The challenges that adolescents and parents face are adaptive-type challenges, rather than technical-type challenges. While technical-type challenges are easily fixed with technical work, more complex adaptive work is needed to address adaptive-type challenges, making the shifting of management responsibility more complex.To understand health care transition in AYAs with SCD, we conducted a longitudinal examination of health care utilization for AYAs with SCD during transition to adult care and examined the factors associated with the different trajectory groups. Most AYAs in our sample had low clinic, hospital, and emergency department (ED) utilization trajectories. Few AYAs had high utilization in the clinic, hospital, and/ or ED. However, this group usually accounts for the highest costs of care. The sample mean emergency reliance scores were also below the cutoff point of 0.33 for high ED reliance. However, we did find evidence of increasing reliance on the ED compared to ambulatory care with increasing age indicating that a small group of AYAs with SCD might be at increased risk for high reliance on the ED. Individual, contextual, and transfer related factors were associated with the different health care utilization trajectory groups for AYAs with SCD. These factors varied between the different health care services indicating the complexity of health care utilization in AYAs with SCD and the factors influencing them. Receiving hydroxyurea was the only common predictor between higher clinic and higher hospital utilization trajectory groups, while distance to the sickle cell center was the only common predictor between higher clinic and higher ED utilization trajectory groups. Depression, chronic pain, long-acting narcotics, and chronic transfusion at age 19 predicted higher hospital and higher ED trajectory utilization groups. A major finding in this study was the association of several mental health conditions, including depression, with health care utilization group membership. This finding underscores the importance of routine screening and adequate management of mental health care conditions in AYAs with SCD, especially during transfer to adult care. One goal of this dissertation was to describe successful transition. The majority of our sample has transferred to adult care. The mean age at transfer was 19 years. We also examined the continuity of care after transfer and the majority of participants who transferred to adult care had at least one additional encounter in the adult sickle cell clinic, and around 65% had more than ten encounters. Only a few (5.83%) had no adult encounters after transfer. As a result, we considered the vast majority of participants who had at least one encounter in the adult sickle cell clinic to have successfully transferred and integrated into adult care.</p
Human Flourishing in Adolescents and Young Adults with Cancer
No full textSurvivorship of adolescents and young adults with cancer (AYAC) has for the last decade been a critical issue in pediatric oncology. Some studies have emphasized the importance of a positive health approach for AYAC, enhancing strengths and resources necessary to successfully address life-long challenges during and after treatment. Human flourishing (HF), a life-long process to achieve “uniqueness, dignity, diversity, freedom, happiness, and holistic well-being of the individual” (National League for Nursing, 2014, p. 1), can work as an excellent target for health care that addresses the unique needs of AYAC. However, the concept of HF has received scant attention in the field of pediatric and young adult oncology and has been applied in a very limited fashion to AYAC. Thus, this dissertation explored the concept of HF in AYAC and developed a concept-based targeted intervention using a Multiphase Optimization Strategy (MOST) Framework.To gain a better understanding of the concept of HF in the context of AYAC, we conducted three different studies: (1) a concept analysis of HF in AYAC; (2) an exploratory study of HF in AYAC from pediatric oncology professionals’ perspectives (N=17), and; (3) a prototype intervention development and single case feasibility and acceptability study. We found critical attributes of HF in AYAC and developed a preliminary conceptual model. Based on the findings of two previous studies, a literature review, and individual/focus group discussions with experts, we developed a dyadic storytelling intervention between a nurse and a patient. To test this intervention’s feasibility and acceptability, we applied the prototype intervention to a single dyad of an adolescent with cancer and a pediatric oncology nurse. Data suggest that the intervention is feasible and acceptable. We will revise the program and conduct a large-scale pilot study as a next step.The findings from this dissertation study explore and contribute to the knowledge generation surrounding the critical attributes of HF in AYAC and develop a preliminary conceptual framework. Additionally, this study represents a very early step in the translation of knowledge on HF to nursing care for AYAC. As we continue to develop the intervention in the future, we will explore diverse participants’ experiences and perspectives of flourishing while undergoing cancer treatment.</p
Going Beyond Counting First Authors in Author Co-citation Analysis
Get PDFThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Get PDF“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
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