Browsing by Department "Nursing"

Behavioral symptoms of dementia cause considerable distress for persons with dementia and their caregivers and are related to adverse outcomes that have significant social and economic impact. Thus, behavioral symptoms represent one of the most challenging aspects of dementia care. Over the past three decades, research on behavioral symptoms of dementia has laid the foundation for development of non-pharmacological interventions by identifying underlying mechanisms of symptom development. However, the research has largely overlooked how the needs of military veterans may influence development and treatment of behavioral symptoms of dementia, including those needs associated with co-occurring dementia and posttraumatic stress disorder (PTSD). This dissertation aimed to develop knowledge related to behavioral symptoms of dementia among older veterans with and without PTSD by synthesizing current understanding of neurocognitive and psychiatric comorbidities of PTSD among veterans as well as explicating relationships among background factors, proximal factors, and behavioral symptoms of dementia among veterans living in residential care using the need-driven, dementia-compromised behavior (NDB) model.

This dissertation includes a systematic review in Chapter 2 that synthesized the patterns of neurocognitive and psychiatric comorbidities of PTSD in older veterans and revealed a substantial gap in the literature with regards to understanding manifestations and treatment of behavioral symptoms of dementia among older veterans with co-occurring dementia and PTSD. The primary study of this dissertation that encompasses Chapters 3 and 4 utilized an exploratory sequential mixed methods design using secondary data derived from the evaluation dataset of the STAR-VA training program. In Chapter 3, a qualitative study, as the first phase of the mixed methods study, analyzed text data that captured the interdisciplinary care team’s observation of behavioral symptoms of dementia and their circumstances for the subsample of 33 veterans from the STAR-VA dataset. This qualitative study described how behavioral symptoms of dementia are manifested among veterans with and without PTSD in the context of personal, interpersonal/social, and environmental factors that trigger the symptoms. Findings demonstrated that behavioral symptoms of dementia are heterogeneous, with distinct clusters of triggers that are multi-level, thereby warranting an interdisciplinary, multi-level approach to developing person-centered interventions. In addition, findings from this qualitative study informed the development of the second phase of the sequential mixed methods study in Chapter 4 that aimed to test hypothesized pathways between background factors, interpersonal triggers (proximal factors), and behavioral symptoms of rejection of care and aggression and to explore the moderating effect of PTSD on the hypothesized pathways. The mixed methods approach integrated quantitative data measured by standardized scales and text data for 315 veterans derived from the STAR-VA dataset. After converting text data into categorical variables, structural equation modeling (SEM) was performed to compare the patterns of relationships among background factors, interpersonal triggers, and behavioral symptoms of rejection of care and aggression between veterans with and without PTSD. The direct effect of interpersonal triggers and the indirect effect of background factors through interpersonal triggers on rejection of care and aggression emphasizes the importance of developing and implementing psychosocial interventions that improve interpersonal relationships. The multi-group SEM revealed that the full model was not moderated by PTSD. However, the differential direct and indirect effect of background factors and interpersonal triggers as a proximal factor on the behavioral outcomes between veterans with and without PTSD suggest potential different mechanisms of behavioral outcomes between veterans depending upon whether or not PTSD is present. Evidence for the PTSD-moderated mediating effect of interpersonal triggers on the relationship between depression and rejection of care was demonstrated, suggesting the need to develop targeted interventions for veterans with dementia and PTSD who have greater depressive symptoms.

The new knowledge generated from this dissertation helps to clarify complex patterns of associations among background factors such as PTSD and proximal factors and behavioral symptoms of dementia consistent with the NDB model, strengthening the foundation for development of novel approaches to designing and implementing person-centered care for veterans with co-occurring dementia and PTSD.

Background: Obesity is the number one health risk facing Americans. The obesity epidemic in America is attributed to physical inactivity, unhealthy food choices, and excessive food intake. Structured weight loss programs have been successful in initiating behavior change and weight loss; however, weight is almost always regained over time. The rate of weight gain is highest immediately after cessation of a structured weight loss program. Thus, effective interventions are needed that can successfully be used following a structured weight loss program to sustain weight loss and prevent weight relapse. Due to low cost, ubiquity, and ease of use, healthcare communicated through mobile technology, or "mHealth", may be able to serve as an effective medium to reach a large number of people to facilitate weight loss behaviors. Short message service (SMS), also known as text messaging, is easy to use, ubiquitous, affordable, and can target people directly where they are regardless of geographic location, socioeconomic status, or demographic factors. A review of the literature demonstrated limited information regarding message content, timing and frequency of message delivery and only 3 of 14 SMS-related interventions reviewed demonstrated a statistically significant effect on weight loss, diet or exercise. Additionally, information on how to integrate and leverage SMS as a health promotion tool for weight loss was also limited in the literature.

The Behavior Change Process model was used as a guide to understand how to develop an intervention to help people sustain recent weight loss. Furthermore, research suggests interventions that target and frame messages about how people reach goals in their life through either a prevention or promotion focus may be beneficial at motivating people to self-regulate and sustain recent behavioral changes. The goal of this study was to design an intervention that would help people stay in the continued response phase of the Behavior Change Process and help prevent weight relapse. Using the Behavior Change Process and regulatory focus theory, an intervention was developed that leveraged short message service (SMS) to deliver messages to people who have recently lost weight in attempt to help them sustain weight loss and prevent relapse.

Methods: First, a pilot study was conducted to inform the development of a SMS software application, the development of message content and the frequency and timing of message delivery. Second, an exploratory 3-arm mixed methods randomized controlled trial was conducted to test the feasibility, acceptability, perception of the usefulness, and efficacy of a weight loss sustaining mHealth SMS intervention among people with obesity. Participants (N=120) were randomized to a promotion message group, a prevention message group, or an attention-control general health message group. Participants completed baseline assessments, and reported their weight at 1 and 3 months post-baseline to assess efficacy of the intervention on sustaining weight loss. In addition, participants partook in a phone interview follow completion of the intervention to assess acceptability and usefulness.

Results: Participants found the message content and intervention acceptable and a majority perceived value in receiving messages via SMS that promote weight loss sustaining behaviors. Interview data implied that the intervention served as a reminder and daily cue to action. Participants were favorable towards receiving a daily reminder, which they noted helped them to stay focused, and in some cases to keep them motivated to continue losing weight. And a majority, 42 (91%) who participated in a telephone interview said that they preferred to get messages on their cell phone due to accessibility and convenience. A minimum of one message per day delivered at approximately 8:00 A.M. was deemed the optimal delivery time and frequency. This was particularly true for weight loss, which many participants reported as a daily struggle that begins every morning. With regards to sustaining weight loss, there was a statistical trend in sustained weight loss at months 1 and 3 in the promotion and prevention framed message groups compared to the control group in both the intent-to-treat and evaluable case analyses. Clinically, there was a significant decrease in mean weight of approximately 5 pounds at month 3 in the promotion and prevention groups compared to the control. Additionally, effect sizes indicated a large effect of the intervention on sustaining weight loss in the promotion and prevention groups relative to the control group.

Conclusion: Overall results showed that at the continued response phase of the behavioral change process, it was feasible to design an application to deliver promotion and prevention framed weight loss sustaining messages. In particular, prevention framed messages may have been more useful in helping participants sustain weight loss. Though there was less than 80% power to detect a statistically significant difference, the observed effect sizes in this study were significant and demonstrated a large effect of the promotion and prevention interventions on sustaining weight loss relative to control. Furthermore, there was a clinically significant increase in mean weight loss and in the number of people who sustained weight loss in the promotion and prevention intervention groups compared to control.

These findings may serve as a reference for future interventions designed to help people thwart relapse and transition from a state of sustaining recent weight loss behaviors to a state of maintenance. Technological tools such as this SMS intervention that are constructed and guided by evidence-based content and theoretical constructs show promise in helping people sustain healthy behaviors that can lead to improved health outcomes.

Problem and Purpose: Arab adolescents are considered a particularly vulnerable population to depression. The substantial lack of mental health services and the stigma associated with mental illness on the one hand; and poverty, unemployment, and lack of reasonable hopes for a decent future in the context of corruption of regimes and perceived social injustice on the other, call for establishing committed and effective policies to tackle depression and its associated stigma among Arab adolescents at risk for or diagnosed with depression. However, there is a substantial lack of research that can inform the current profile of adolescent depression in the Arab region. We conducted two systematic reviews on Adolescent depression and mental illness stigma in the Arab region and found that there is currently no solid evidence available on the prevalence of depression among Arab adolescents and its potential associations with depression stigma and help-seeking beliefs and intentions. This gap in the literature makes it difficult to design, implement, and disseminate effective interventions to improve the prevention, diagnosis, and treatment of adolescent depression. Therefore, the overarching purpose of this study was to estimate a prevalence of depression symptoms among Arab adolescents, and determine relationships with depression stigma, depression etiologic beliefs, and likelihood to seek help for depression.

Methods: This study was conducted in Jordan, a Middle Eastern Arab country. A pilot study with a sample of 88 Jordanian adolescents was first conducted to assess the feasibility of collaboration and coordination with the proposed recruitment sites; assess proposed recruitment strategies; confirm the utility of the translated self-reported measures and examining their psychometric properties; and obtaining preliminary findings. Based on the lessons learned from this pilot study, we designed a nationally representative, school-based survey. Data were collected from 2,349 adolescents aged 12-17, using a packet of self-administered questionnaires that included measures on sociodemographic and health history, depression severity, depression stigma, depression etiologic beliefs, and likelihood to seek help for depression. A passive consenting procedure was used to obtain parental consents, while returning the survey questionnaires was considered a tacit assent for the adolescents. The study obtained the needed Institutional Review Board approvals from both Duke University and the University of Jordan. Participants represented all three regions in the country, with 34% from the northern (suburban) region, 43% from the central (urban) region, and 23% from the southern (rural) region.

Results: The majority of the adolescents were females (59%) and 15-17 years old (67%). Almost 14% reported having at least one chronic health problem, 15% reported having a mental health problem, 25% reported having academic difficulties, 8% reported that they had received a psychiatric diagnosis, and 22% reported that they had sought psychological help at some point in the past. The mean total depression score was 16.3 (SD=11.2, 95% CI=15.8 to 16.7), with 34% of the sample reporting moderate to severe depression. Depression was significantly higher among respondents who were female, ages 14-15 years, and living in families with monthly incomes less than JD300 (USD 423); and who reported having a chronic health problem, mental health problem, learning difficulty, a psychiatric diagnosis and/or seeking previous psychological help. Adolescents endorsed multiple etiological factors for depression. The most often reported factors were stressful events in one’s life (72%), social factors (65%), and one’s weak will (56%). On the other hand, the least reported factors were genetic or inherited problems (24%), chemical imbalance (30%), and punishment for wrong doings (35%). Adolescents were more likely to seek help for depression from a family member (57%), followed by a counselor (46%), psychiatrist (43%), religious leader (39%), and general practitioner (28%). In addition, 53% of the adolescents reported they will be willing to take medications for depression, while 50% expressed willingness to seek a therapy, and 25% of the adolescents reported they will not be willing to seek any professional help for depression. Almost half of the adolescents agreed on items that reflect stigmatizing attitudes towards depression. Adolescents reported higher rates of perceived depression stigma than personal depression stigma. Depression stigma was not significantly associated with the adolescent’s severity of depression, but with adolescent’s sex, age, region of residence, parents’ education, and history of mental health problem.

Conclusions: This study revealed alarming results in terms of the current high prevalence and social determinants of adolescent depression in Jordan. The study also shed light on how depression stigma manifests among Jordanian adolescents and how such stigma relates to their beliefs about depression and likelihood to seek professional psychological help. We discuss how healthcare providers, researchers, and educators can focus attention on developing effective and culturally appropriate screening, prevention, and intervention approaches using evidence-based guidelines to promote Jordanian adolescent mental health, particularly for depression. This approach will be important not only for Jordan, but for all of the Arab region, given that many of the Arab countries have been witnessing years of mass violence, armed conflicts, and war. The study also provides important recommendations on when, how, and why to utilize school settings for anti-depression stigma interventions. Overall, findings from this study provide a solid, culturally competent foundation from which to conduct future research to tackle depression and its associated stigma, and reflect the unique characteristics of Arab culture.

Effective patient care transitions require consideration of the patient’s social and clinical contexts, yet how these factors relate to the processes in care coordination remains poorly described. This dissertation aimed to describe provider networks and clinical care and social contexts involved during longitudinal care transitions across settings. The overall purpose of this dissertation is to uncover the longitudinal patterns of utilization and relational processes needed for effective care coordination in transitional care, so we can redesign interventions that focus on informational and relationship networks to improve interaction patterns and system performance for people living with heart failure (HF) as they undergo transitions across settings and over time. This dissertation was a retrospective exploratory study. Chapter 2 is an integrative review examining coordination processes in transitional care interventions for older adults with HF by integrating a social network analysis framework. We subsequently selected a cohort of patients aged 18 years or older (n = 1269) with an initial hospitalization for HF at Duke University Health System between January 1, 2016 and December 31, 2018 based on encounter, sociodemographic, and clinical data extracted from electronic health records (EHR). In Chapter 3, a latent growth trajectory analysis was used to identify distinct subgroups of patients based on the frequency of outpatient, as well as emergency department (ED) and inpatient encounters 1 year before and 1 year after the index hospitalization; multinomial logistic regression was then used to evaluate how outpatient utilization was related to acute care utilization. Based on findings (described in Chapter 3), we purposively sampled 11 patients from the Chapter 3 cohort for a second empirical study (described in Chapter 4) with a mixed-methods sequential explanatory design. These 11 patients had a full spectrum of experience in socioeconomic disadvantages based on three strata (race, insurance, and Area Deprivation Index), but they had similar levels of comorbidity and average severity of illness and displayed the same change in the severity of illness during the study period. We used quantitative and qualitative data available from clinical notes in the EHR, and integrated results from quantitative and qualitative analysis to better understand the social and clinical context and social structure essential for care coordination. High variability in transitional care is likely because care coordination processes are highly relational. The relational structure of transitional care interventions varied from triadic to complex network structures. Use of a network analysis framework helped to uncover relational structures and processes underlying transitional care to inform intervention development. Chapter 3 revealed that high heterogeneity exists in patients’ utilization patterns. A small subgroup of high users utilized a substantial amount of the resources. Patients with high outpatient utilization had more than 4 times the likelihood of also having high acute care utilization, and change in the severity of illness had the highest level of significance and strongest magnitude of effect on influencing high acute care utilization. Chapter 4 demonstrated the feasibility of using clinical notes and social network analysis (SNA) to assess the provider networks for patients with HF in care transitions. People who were experiencing more socioeconomic disadvantages and social instability were less likely to have densely connected provider teams and providers who were central and influential in the system network. Lacking consistent and reciprocal relationships with outpatient provider teams, especially primary care provider and cardiology teams, was precedent to poor care management and coordination. Turbulence in care transition can result from sources other than transitioning between settings. This dissertation demonstrated the (a) importance of understanding relational processes and structure during patients’ utilization of acute and outpatient care services and (b) potential to capture structural inequalities that may influence the efficiency of care coordination and health outcomes for patients with HF.

Background. Creating health equity—“the attainment of the highest level of health for all people”— is a core tenet of public health (American Public Health Association, 2015; United States Department of Health and Human Services, 2011, p. 1). Achieving health equity requires the identification and amelioration of patterns of systemic disadvantage and the elimination of health disparities (Gostin & Powers, 2006; United States Department of Health and Human Services, 2011). To do this, health researchers must address social determinants of health (SDOH) and of equity. I have selected women with migraine as a paradigmatic case for this exploration of health equity and agency.

Migraine is a common and debilitating neurobiological disorder without a cure (Goadsby, 2012). It affects almost three times as many women as men, and disproportionately disables women occupying low social locations, that is, occupying a low position on the social hierarchy (Burch, Loder, Loder, & Smitherman, 2015b; Stewart, Roy, & Lipton, 2013). A dearth of effective and affordable treatment options has rendered non-pharmacological self-management a crucial part of living with migraine, yet clinical treatment guidelines consistently emphasize pharmacological intervention (Becker et al., 2015; Diamond et al., 2007; Raphael, 2012). Much of migraine research is epidemiological (Burch et al., 2015b; Buse et al., 2013; Lipton, Serrano, Holland, et al., 2013). The resulting gap in knowledge around the experiences and needs of women navigating the complexities of life with migraine is especially pronounced for those who are less likely or able to access systems that document and treat the condition.

Objective and Methods. The overall purpose of this dissertation is to develop knowledge on the effects of social and structural determinants on the experiences of women living with migraine, with attention to their strategies and priorities for self-management through a systems thinking lens. To do this in the context of this dissertation, I first explore the benefits of critical systems approaches for health equity research (Chapter 2), followed by a description of the development and use of two systems thinking tools for data collection in community focus groups of women with migraine (Chapter 3). Our study team used the system support map tool (SSM) to identify and describe migraine triggers and features, self-management strategies, and the needs and outcomes associated with self-management (Chapter 4). The connection circle (CC) tool explored the relationships between triggers and features, self-management strategies, and outcomes (Chapter 5).

We conducted seven focus groups with 19 women with migraine from diverse social locations and analyzed the data using qualitative content analysis, dimensional analysis, and measures of complexity. We examined variation by social location in the data from both tools.

Findings. The tools we developed allowed us to feasibly and effectively collect rich and nuanced data from community-based women with migraine. One of the tools—the CC— may be more effective when coupled with problem solving techniques when used with women in low social locations (Chapter 3).

The SSM data underscored the distinctions in migraine experience by social location (Chapter 4). While women from all social locations identified stress as a top migraine trigger, descriptions and definitions of stress varied. Women in low social locations were more likely to engage in isolating and avoidant self-management activities, and women in higher social locations were more likely to use proactive, complementary, and integrative approaches. Women in low social locations had lower expectations for self-management and were more interested in pain management than women in higher social locations, who were more interested in self-improvement.

The CC data revealed that ‘conceptualization of complexity,’ or the way and degree to which participants contemplated dynamic interrelationships, was a key dimension in understanding how women in diverse social locations identified relationships between different aspects of their migraine experiences. There were clear differences in the conceptualizations of and capacities for complexity by social location. Women in high social locations demonstrated greater depth, breadth, and structure of this key dimension than women in low social locations.

Discussion and Conclusions. As a non-fatal, but highly disabling, condition with limited and costly treatment options, migraine provides an excellent paradigmatic case for exploring health equity. Ability to have a high quality of life with migraine may be deeply entwined with one’s social location. Therefore, to improve the experiences of the group most affected by migraine—women in low social locations—we cannot limit our research and treatment to the biological and behavioral. We need to think in terms of the social and structural. Creating equitable outcomes, wherein everyone has an equal opportunity for a fulfilling and healthy life, requires that we intervene on multiple levels, engage with affected women, and explicitly commit to addressing social and structural determinants of health AND equity.

Drug-resistant tuberculosis (DR-TB) is a threat to TB control globally. South Africa has the third highest epidemic of DR-TB – following only Russia and China, two much more populous countries. South Africa has stringent guidelines for treating DR-TB; however, little is known about adherence to these guidelines. Additionally, little is known about age appropriate treatment, particularly in youth (13-24 years) who may have differing needs than adults with DR-TB. South Africa also has the world’s largest HIV epidemic – nearly 18% of the population is infected with HIV. Individuals with HIV are 26 to 31 times more likely to become infected with TB than individuals without HIV. Among individuals in South Africa with TB, there is a 57-68% HIV coinfection rate.

This dissertation includes a systematic literature review (Chapter 2) exploring barriers to TB treatment initiation in sub-Saharan Africa with an emphasis on children and youth. Additionally, time to treatment was assessed per South African guidelines (i.e. initiating treatment within five days of diagnosis) and total days from DR-TB diagnosis to DR-TB treatment initiation. This analysis included multi-level modeling with fixed patient- (sex, history of TB, HIV coinfection) and system-characteristics (urban-rural location, province) and random effects of treatment site. Guidelines were further evaluated, by assessing through descriptive statistics and logistic regression, receipt of guideline recommended care in terms of correct medications prescribed, correct dosage prescribed, and correct frequency prescribed at treatment initiation (correct regimen).

Barriers exist for all individuals with TB to initiate treatment regardless of age. These barriers are at the patient- and system-level and include: costs, health seeking behaviors, and infrastructure. More research is needed to identify barriers specifically among children and youth, as only four articles reviewed focused on these vulnerable populations. The time to DR-TB treatment is delayed for 84% of South Africans, and age did not predict delays. Seventeen percent of individuals coinfected with HIV receive care per guidelines compared to 12% of those without coinfection. Additionally, receipt of correct medications was prescribed to 88% of patients, yet only 33% received correct medications and doses, and still, only 30% received the full correct regimen. Age was not a strong predictor for receipt of correct guideline based treatment. In conclusion, more research must be focused on younger individuals with TB, particularly DR-TB. More research investigating guideline recommended care is essential to improve patient outcomes, prevent the transmission of DR-TB in communities, and to prevent further drug resistance.

Healthcare workers (HCW) have historically suffered from high rates of burnout, and these rates have continued to rise during the pandemic (Sexton et al., 2022). Burnout among healthcare workers carries significant consequences for both HCWs (Davidson et al., 2018; Stathopoulou et al., 2011) and patients (Schlak et al., 2021). National organizations have focused their attention on this issue of improving HCW well-being. Greater clarity is needed to understand how best to optimize HCW well-being and to address the challenges of HCW burnout. The purpose of this dissertation was to generate knowledge on HCW burnout and resilience. Specifically, this dissertation used existing data from the Web-based Implementation of the Science for Enhancing Resilience (WISER) data set and encompasses three studies whose purpose was: (1) to describe the stressors that HCWs experience using a summative content analysis to determine the types and total numbers of stressors; (2) to identify subgroups of nurses with distinct profiles of well-being using a latent profile analysis to identify profiles of burnout (emotional exhaustion) and resilience (emotional thriving and emotional recovery); bivariate statistics were used to identify profile differences in nurse characteristics; and (3) to identify types of well-being behaviors and the total number of well-being behaviors associated with resilience among HCWs. Bivariate statistics were used to identify the relationship of each type of well-being behavior with emotional thriving and emotional recovery, and to identify the total number of well-being behaviors with emotional thriving and emotional recovery. General Linear Models using analysis of covariance was used to examine the relationships between the well-being behaviors and the total number of well-being behaviors, respectively, with emotional thriving and emotional recovery, after adjusting for covariates. The main findings of this dissertation included those regarding stressors, the co-occurrence of burnout and resilience, and findings related to well-being behaviors. First, stressors are experienced in HCWs’ work, personal life, and in ways that intersect both work and personal life. Second, we found that nurses experienced a combination of burnout (emotional exhaustion) and resilience (emotional thriving and emotional recovery) in four distinct profiles of “exhausted,” “exhausted with thriving,” “exhausted with thriving and recovery,” and “thriving and recovery.” Each profile was associated with unique nurse characteristics. Finally, we found that the well-being behaviors of exercise, yoga, meditation, spending time with a close friend, and going on a vacation were all significantly associated with greater emotional thriving while only exercise, and spending time with a close friend were significantly associated with greater emotional recovery (Rink et al., 2021). Findings from this dissertation will inform the development and testing of interventions to reduce burnout and strengthen resilience for HCWs. Specifically, understanding the full breadth of stressors experienced by HCWs can inform the strategies used in interventions to address stress and burnout among HCWs. Additionally, this dissertation identified the co-occurrence of burnout and resilience that extend beyond the previously known dichotomous relationship and underscored the importance of increasing resilience. Finally, findings also can inform future work on enhancing HCW resilience through well-being behaviors.

Introduction: In the fourth decade of the HIV epidemic, African American women continue to be disproportionately affected by HIV across all age ranges in the U.S. African American women make up only 13% of the female population in the U.S. yet account for 64% of HIV infections among women (Aitcheson et al., 2014). African American women face multiple challenges that intersect to influence how they effectively age into older adulthood and manage their health. Due to the increased challenges experienced by older African American women across the life course, it is imperative to identify factors that may mitigate the challenges of aging with the disease. Scant research exists focusing specifically on older African American women with HIV and thus our understanding of their experiences is still quite limited. Examining the personal strengths and social resources utilized to curb the deleterious effects of aging is necessary to improve health and well-being in this population.

Purpose and Methods: The purpose of this dissertation was to advance our understanding of the experiences of African American women with HIV aging across the life course with particular attention paid to the influence of the role of social relationships on health and well-being. The purpose was achieved through exploring the challenges of aging with HIV as an African American woman and the importance of utilizing the life course perspective (Elder & Giele, 2009) to explore their experiences over time; examining the literature on the relationship between social relationships and health; and presenting two papers from the findings of a qualitative descriptive study conducted with older African American women that explored their experiences over the life course. Eighteen African American women over the age of 50 participated in this qualitative study that utilized in-depth life history interviews and timelines as the primary means of data elicitation. In the first paper, we analyzed the data for experiences with social relationships across the life course. In the second paper, we analyzed trajectories and turning points across the life course.

Results: Findings from the first paper highlight that developing and maintaining relationships over time was influenced by a variety of life course themes at the personal, relational, and structural level presented over three developmental time periods (childhood/adolescence, young/middle adulthood, and older adulthood). Women described tremendous barriers to relationship development and maintenance in both childhood/adolescence and young/middle adulthood including child sexual abuse, crack cocaine addiction, intimate partner violence, and HIV-related stigma. Women also reported having large social networks in younger years but not many important relationships. In contrast, older adulthood was described as a time with more positive social relationships, especially for those who were addicted to crack cocaine in their youth. As women aged, they built supportive networks with people they valued.

Findings from the trajectories and turning points paper show that while trajectories across participants were diverse, they were categorized into three main patterns: anchored; early struggling and upward progression; and continuously struggling. Life experiences were most dissimilar between women who experienced crack cocaine addiction compared to women who never used to drugs. The syndemic impact of substance abuse, violence, and HIV (Singer, 2009) was also important as was the cyclical nature of these co-occurring epidemics over time. Our study provides evidence that a traumatic event in early life may be the first step in the syndemic cycle.

Problem and Purpose:

Coronary heart disease (CHD) is the second leading cause of death in China. The treatment of CHD typically involves long-term pharmaceutical therapy. For patients with CHD, cardio-protective medications can prevent the enlargement of harmful clots, cardiovascular symptoms, and poor therapeutic outcomes such as uncontrolled high blood pressure, hyperlipidemia, arrhythmia, heart failure, and sudden cardiac death. However, in China, poor adherence to cardio-protective medications has been cited as a public health concern. This poor adherence to cardio-protective medications has been linked to increases in healthcare costs due to poor therapeutic outcomes typically requiring major medical interventions, such as coronary angioplasty and coronary artery bypass grafting.

In China, local primary healthcare clinics are often not the first choice for treatment. Instead, patients with serious illnesses such as CHD prefer to utilize hospitals. Consequently, many of the 100 million people diagnosed with CHD in China receive prescriptions and medication-related knowledge in hospitals only without a primary care clinician to monitor their treatment. Under this healthcare utilization model, patients are often not provided with proper treatment maintenance and knowledge regarding their medication-taking behaviors. This lack of follow-up care decreases patients’ awareness of the importance of taking medications the way they were prescribed.

Mobile health, known as mHealth, is the use of portable electronic devices with software applications to provide healthcare services and manage patient information. China has 1.3 billion mobile phone users, and 97% of Chinese netizens access the Internet by using a mobile phone. These conditions in China are ideal for implementing an mHealth intervention to improve health and practice. The purpose of this study is to develop an mHealth intervention to improve medication adherence among patients with CHD.

Methods:

First, a pilot study with two phases was conducted in the Cardiology Department of West China Hospital, located in Chengdu, China. Phase I was conducted to inform the development of an mHealth intervention by integrating two mobile applications. The content of reminders and educational materials, the frequency and timing of the intervention were developed in this phase. Based on Phase I, the mHealth intervention was refined and an exploratory randomized controlled trial was conducted in Phase II to evaluate the feasibility and acceptability of using mHealth as a tool to assist CHD patients to take their cardio-protective medications. The cohorts of participants in the two phases were mutually exclusive. Next, a larger scale study with 196 participants was conducted to assess if the mHealth intervention could improve medication adherence and relevant health outcomes (systolic blood pressure, diastolic blood pressure, and heart rate) among patients with CHD in comparison to a control group that receives general educational materials over a period of 60 days.

Results:

In the larger scale study, we recruited 230 participants and randomized 116 to the experimental group and 114 to the control group. Of the 230 participants, 34 participants did not provide their baseline data, thus they did not receive the allocated intervention; we collected baseline data from 196 participants. Of the 196 participants, six participants dropped out of the study and nine were lost during the follow-up period. Finally, 181 participants completed the study, 97 in the experiemental group, 84 in the control group. The majority of the participants were married (92.4%), male (80.1%), Han Chinese (93.9%), and living in urban China (82.1%). Participants’ average age was 61 years old, and half were retired (53.9%). Three out of five participants (61.7%) were prescribed at least five medications. The total medication non-adherence score decreased at 60 days and 90 days in both groups when compared to baseline. At 60 days, the mean of the decrease in medication non-adherence score in the experimental group (M = −1.21, SD = 2.59, N = 103) was greater than the decrease in the control group (M = −0.42, SD = 2.63, N = 93), meaning that the medication adherence improved more in the experimental group. Likewise, at 90 days, the mean of the decrease in medication non-adherence score in the experimental group (M = −1.58, SD = 2.49, N = 103) was greater than the decrease in the control group (M = −0.08, SD = 3.15, N = 93). This difference between the two groups was statistically significant at both 60 days (t = 2.04, df = 179, P = 0.04) and 90 days (t = 3.48, df = 155, P < 0.01).

Heart rate decreased at 60 days and 90 days in both groups compared to baseline, but the mean of the decrease was not statistically significant between the two groups at either 60 days (t = -0.28, df = 148, p=0.78) or 90 days (t = 0.32, df = 145, p=0.75). Systolic blood pressure and diastolic blood pressure decreased in the experimental group, but increased in the control group. The mean of the decrease in diastolic blood pressure was statistically significant at both 60 days (t = 2.07, df = 160, p=0.04) and 90 days (t = 2.21, df = 164, p=0.03). The mean of the decrease in systolic blood pressure was statistically significant at 90 days (t = 3.12, df = 165, p < 0.01), but not significant at 60 days (t = 1.92, df = 161, p=0.06). In addition to comparing the mean of the decreases in health outcomes, we also compared the proportional rates of normal systolic blood pressure, diastolic blood pressure, and heart rate between the experimental group and the control group. The proportional rates of normal systolic and diastolic blood pressures in both groups increased at 60 days and 90 days compared to baseline, but the difference between the two groups at both times was not statistically significant. The proportional rate of normal heart rate in both groups decreased at both times, but the difference between the two groups at both times was not statistically significant.

Conclusion:

In this dissertation, a mobile-phone based mHealth intervention was developed for patients with CHD through integrating two mobile applications to improve medication adherence. The intervention delivered medication-taking reminders and educational materials using two mobile applications. The results showed that the mHealth intervention can increase medication adherence, and potentially lower blood pressure among patients with CHD. These findings can serve as a reference for future research to increase medication adherence and lower blood pressure.

Migration is a fundamental demographic process that has been linked to cognitive function among the immigrant populations in developed countries. However, there is limited understanding of how migration and cognitive function are related among internal migrants in developing countries. The purpose of this dissertation is to provide some of the first evidence of the association between rural-urban migration and cognitive function among middle aged and older adults in China and India. We also examined whether the association between migration and cognitive function can be explained by a variety of factors such as sociodemographic background, health behaviors, and physical health status.

We first conducted a comprehensive review of the literature on the association between migration and cognition among middle-aged and older adults. Based on the current evidence, we developed a general conceptual framework to understand the factors contributing to the association. We identified five potential mechanisms from the literature: 1) socioeconomic status, 2) psychosocial factors, 3) behavioral factors, 4) physical and psychological health status, and 5) environmental factors. We also included several underlying factors in this conceptual framework such as early-life conditions, gender, and genetic factors. Overall, we found that factors linking migration and cognitive function are multidimensional and complex. We encouraged future studies to further test these mechanisms and refine this framework using empirical data.

To examine the association between migration and cognitive function among the internal migrant populations in China and India, we conducted a cross-national comparison study using the 2007-2010 World Health Organization Study on global AGEing and adult health (SAGE) data. We included 12,937 adults aged 50 or over from China and another 6,244 from India. We categorized migration status into six groups: urban residents, rural residents, urban-to-urban migrants, rural-to-urban migrants, rural-to-rural migrants, and urban-to-rural migrants. We generated a global cognitive function score by combing the following five cognitive tests: immediate and delayed recall tests, digit span tests (forward and backward), and verbal fluency test. We also assessed a variety of covariates in the analyses that included sociodemographic characteristics, psychosocial factors, health behaviors, and physical health status.

In the Chinese sample, we found that urban residents and urban-to-urban migrants had the highest level of cognitive function; whereas rural residents and rural-to-rural migrants had the poorest cognitive function. Our findings also showed that people who migrated to/within rural areas before age 20 had poorer cognitive function than those who migrated later in their adulthood. We found similar association in the Indian sample that urban residents and urban-to-urban migrants had the highest levels of cognition; while rural residents and people who migrated to (or within) rural areas had the poorest cognitive function. In both countries, we found that these patterns remain largely unchanged after adjusting for multiple study covariates.

In this dissertation, we also assessed gender differences in the association between migration and cognitive function. While doing a cross-country comparison, we observed a consistent female disadvantage in cognitive function in both countries. We found that female rural residents and female rural-to-rural migrants had the poorest cognitive function in both the Chinese and Indian samples. Among Chinese men, we found that rural residents had poorer cognitive function than urban residents, while urban-to-urban migrants had the highest level of cognition; however, for male counterparts in India, rural-to-rural migrants had the lowest level of cognitive function.

In sum, we found that cognitive function among middle aged and older adults in China and India differ significantly according to their migration status. The association between migration and cognitive function is complex and differs by gender and country.

The number of older adults in South Korea has increased faster than in any other countries. Along with this trend, the increasing burden of cardiovascular disease among this population is of growing national concern. Central to this concern is a highly disproportionate burden of the disease observed among individuals with a low socioeconomic position.

Older adults with a low socioeconomic position in South Korea are indeed a marginalized population who have been exposed to decades of socioeconomic disadvantages due to Korea’s unique history. They have also been unfavorably affected by the socioeconomic support and healthcare system and experienced widening disparities in access to healthcare services, all of which may lead to greater disparities in cardiovascular health.

In Western countries, where cardiovascular disease is the leading cause of death and health disparities among older adults, researchers have consistently provided in-depth and evidence of changing disparities. They have suggested strategic solutions for policy and healthcare professionals to decrease the detrimental influences of socioeconomic position on health for this group. However, few studies have been conducted on disparities in cardiovascular health among older adults based on socioeconomic position in South Korea. Therefore, the purpose of this dissertation is to explore disparities in cardiovascular health among older adults according to socioeconomic position in South Korea.

This dissertation is organized into five chapters. Chapter 1 introduces the overall research agenda. Chapter 2 provides a systematic review of the literature on socioeconomic disparities in cardiovascular health among Korean adults. Based on the Chapter 1 and the findings of the systematic review, the purposes of data-driven chapters are constructed to address the following aims. First, Chapter 3 will examine time trends in socioeconomic disparities in cardiovascular health over the past decade among older adults in South Korea. Second, Chapter 4 will investigate the role of material, behavioral, psychological, and social-relational factors in the explanation of disparities in cardiovascular health among older adults in South Korea. Particularly in this dissertation, health disparities are defined as differences in health between two or more socioeconomic groups within a population.

The criminal justice healthcare system has the potential to impact millions of individuals annually. There are more than 2.3 million individuals in a prison or jail at any given time. Not accounting for individuals that have been released from a correctional setting back into the community, under community supervision, which account for 4.5 million individuals. Individuals with a history of justice-involvement have higher prevalence of chronic diseases and often seek healthcare in high-cost area such as the emergency room. Furthermore, this population face unique challenges related to socioeconomic needs, such as securing housing and employment. Yet, limited empirical evidence explores chronic noncommunicable diseases (NCDs) or factors that impact how one manages their chronic NCD after incarceration using a representative sample. Therefore, this dissertation uses a cross-sectional, descriptive, correlational study using the 2018 National Survey of Drug Use and Health to estimate the rates for the five chronic NCDs (heart conditions, hypertension, diabetes, asthma, and cancer) and the rates of individuals with a history of a chronic NCD. In addition, this dissertation has examined outpatient healthcare utilization among adults in the community supervised population (CSP) relative to the adults in the non-CSP.This dissertation includes a scoping review of literature in Chapter 2 that examine current practices of care and interventions use to improve the management of chronic diseases within a correctional setting. As well, as a broad scope of the current state of the evidence regarding chronic disease management within this population. Chapter 3 aims to describe the rates of chronic NCDs, history of having a chronic NCD, and outpatient utilization in the CSP relative to the non-CSP. In addition, Chapter 3, explores the differences in rates of chronic NCDs, history of having a chronic NCD, and outpatient utilization among the CSP (probation, parolee, and probation and parole). Chapter 4 dives deeper within the CSP to identify individual characteristics, socioeconomic characteristics, and clinical characteristics that are associated with chronic NCDs, history of having a chronic NCD, and outpatient utilization. Chapter 5 synthesized findings within the context of the current literature and produces future directions in research, policy, and practice that the results may impact to improve the management of chronic NCDs among the justice-involved population. Furthermore, the limitations to this dissertation are addressed within the context of the study. Management of chronic diseases among the justice-involved population is critical to ensuring improved health outcomes and reducing the burden of public healthcare systems. Identifying and describing the population characteristics of the CSP is foundational in developing targeted interventions in policy and practice with the goals to achieve optimal health outcomes among the justice involved population.

In the context of rapid global aging, cognitive decline among older adults has become a major public health and social issue. A better understanding of the risk factors for cognitive decline is important for developing interventions to preserve cognitive function among older adults. Knowledge gaps still exist in understanding the impact of sensory loss (i.e., hearing loss and vision loss) and psychosocial factors (i.e., social support and loneliness) on cognitive function and cognitive decline. This dissertation aims to fill these knowledge gaps by (1) examining the relationship between psychosocial factors and cognitive function in a unique population: community-dwelling Chinese older adults in the United States (U.S.); (2) understanding the longitudinal relationship between sensory loss and cognitive decline among community-dwelling older adults in the United States; and (3) exploring the mechanisms that accelerate or decelerate cognitive decline by examining the inter-relationships between sensory loss, psychosocial factors, and cognitive decline. The primary study conducted for this dissertation used structural equational modeling (SEM) to model the potential moderation or mediation effect of psychosocial factors on the relationship between sensory loss and cognitive decline over time. Findings from this dissertation deepen our understanding of the important roles that social support, loneliness, and sensory loss can play in cognitive function and decline among community-dwelling older adults. Findings from this dissertation also highlight the importance of adequately addressing the physical and psychological challenges encountered by older adults. Subsequent recommendations are provided to health providers and policy makers to help better preserve and promote cognitive health among older adults using a more holistic approach.

Background: Family caregivers for a parent with dementia often experience negative emotional consequences. These caregivers may also be at risk for compassion fatigue, a concept that was introduced to the health care community as feelings of anger, inefficacy, apathy, and depression resulting from a caregiver's inability to cope with devastating stress. Compassion fatigue was first observed in nurses and later in other caring professionals such as social workers and psychologists and the definition was adapted to focus on prolonged exposure to suffering as one of the primary causes.

Although compassion fatigue has not been studied in family caregivers providing care at home, their experiences, particularly those of adult daughter caregivers for parents with dementia, appear to create a foundation for developing compassion fatigue. For this reason, it was important to investigate compassion fatigue in this growing population of caregivers and this dissertation explored compassion fatigue in daughter caregivers for parents with dementia. The dissertation aims were to 1) identify common themes across the literature on compassion fatigue and to apply these themes and the existing model of compassion fatigue to informal caregivers for family members with dementia, 2) analyze secondary data from Project ASSIST to substantiate a need for further study of compassion fatigue in adult daughter caregivers of a parent with dementia, 3) explore the feasibility of studying compassion fatigue in family caregivers, and 4) explore compassion fatigue and the contributing factors and potential outcomes of compassion fatigue in adult daughter caregivers for parents with dementia.

Methods: The dissertation consisted of three studies. The first study, a review of the literature addressed aim 1 of the dissertation as I applied the established model of compassion fatigue to family caregivers. The second study, a secondary analysis pilot study addressed aim 2 and aim 3 of the dissertation study. The third study of the dissertation was a qualitative study exploring the concept of compassion fatigue in daughter caregivers for parents with dementia.

Conclusions: The literature review found evidence to support the components of the established model of compassion fatigue and findings suggested additional work was needed on the concept of compassion fatigue in family caregivers. Findings from the secondary analysis provided support for more in-depth exploration of the concept of compassion fatigue in family caregivers. Findings from the larger qualitative study provided support for many of the factors related to compassion fatigue, but also suggested revisions to the established model of compassion fatigue were needed. A revised model was created based upon the findings from this dissertation.

The revised model incorporates the contributing factors and moderators of compassion fatigue found in family caregivers and the model also proposes revised characteristics and outcomes of compassion fatigue. Findings from this dissertation also suggest new areas for research, specifically with all dementia caregivers and caregivers who do not utilize formal or informal support. Additional value from this dissertation derives from the detailed explanation of previous relationship quality, empathy, and caregiving experience. This dissertation is one of a few qualitative studies on compassion fatigue to provide this level of detail and serves to anchor future research on compassion fatigue in all family caregivers.

African Americans face persistent health inequities. Obesity is linked to multiple chronic disease conditions and prevalence has climbed sharply in the last decades (Budd & Peterson, 2014; Samuel-Hodge et al., 2009) – especially for African Americans. African American churches and relationships between its members are trusted community resources that support and promote health. Health disparities are best addressed by understanding and optimizing resources, such as churches, within environments where people live, work, play and pray. Dyadic peer support has been used successfully to promote weight loss and improve diabetes management. It is recommended as a potential health promotion strategy for African Americans. This dissertation explored the concept of religious social capital as a health promoting asset, and the feasibility of using dyadic peer support to promote healthy weight in African American churches. To our knowledge, using dyadic peer support to promote healthy weight among members in African American churches has not been explored. The Transactive Goal Dynamics Model, Community Empowerment Theory, and the Socioecological Model provided the theoretical framework for this dissertation.

Religious social capital is a significant contributor to the health of individuals and communities, particularly among African Americans and ethnic minorities. A concept analysis of religious social capital within the context of health was conducted. Rogers Evolutionary Concept Analysis method was used. The analysis identified antecedents, attributes, and consequences of religious social capital. An operational definition, including bonding, bridging, and linking types of religious social capital, was developed. The analysis provided a basis to better understand how religious social capital can be utilized to improve health in populations experiencing health disparities.

In Chapter three, formative research was conducted to explore African American church members’ and health educators’ perceptions of using dyadic peer support to promote healthy weight in African American churches. From 2017-2018, researchers conducted 21 semi-structured interviews to better understand perceptions of using a dyadic peer support program to promote healthy weight. Seventeen African American church members four county and regional health educators from North Carolina were interviewed. Conventional qualitative content analysis was used to analyze the data and identify themes across cases. Key themes included: (1) the church and health are intertwined (2) working in pairs is natural and beneficial; (3) members want to help and be helped; (4) attitude and motivation are important considerations for dyads; and (5) dyad activities should be structured and frequent. The study showed that because of strong ties and relationships, participants felt churches were fertile ground for using dyadic support to promote healthy weight.

In Chapter four, a prospective multi-method 18-week pre post study was completed to determine the feasibility of using dyadic peer support to augment an existing healthy weight program in African American churches. Descriptive statistics, multilevel models, and semi-structured interviews were used to assess 1) program feasibility, 2) changes in weight, blood pressure, fruit and vegetable intake and physical activity, and 3) how dyad partners cooperate to achieve their health goals. Eighty participants from three churches in three counties in North Carolina enrolled.

The program completion rate was 78%. Over 95% of participants report wanting to work with a partner again. Participants achieved small but significant average increases of 1.1 servings of fruit (p value=0.001) and 1.2 days (p value=0.01) of 30 minutes of physical activity pre and post intervention. There were no significant changes in weight, systolic blood pressure, BMI, or vegetable intake from baseline to 18 weeks. Significant changes in weight (-2.6 pounds, 95%CI= -4.18, -1.1, p-value= 0.001) and vegetable intake (0.681 servings, 95%CI= 0.122, 1.241, p value=0.017) achieved during the first nine weeks of the program were maintained during the second nine weeks. Dyads were strongest at developing team goals, communicating weekly, and providing motivation in the form of encouragement. Dyads had difficulty identify solutions to goal attainment challenges and finding consistent times to communicate. This study indicated that it is feasible to implement a dyadic peer support program to promote healthy weight within African American churches. Future programs should help dyads identify consistent times to meet, and improve problem solving to overcome challenges by initiating partnering earlier during the program, and tapering group meeting frequency more slowly.

African American churches and relationships between members are community assets that promote health. Dyadic peer support programs may optimize these relationships to improve health promotion programs. Additional dyadic peer support studies including control groups are needed to better understand their effects and sustainability. If found effective, they may be used as an adjunct to various community-based health promotion programs to address health equity. Additional community assets and unique characteristics of different African American communities should be considered when designing health promotion programs.

Most breast cancer survivors do not exercise enough to experience its numerous benefits that include improved quality of life and decreased recurrence risk. A potentially effective strategy to increase exercise among this population is to increase their outcome expectations (OEs). OEs are what one expects to obtain or avoid by engaging in a behavior. OE dimensions include 1) importance - value placed on the outcome(s); 2) certainty - perceived probability outcome(s) will occur; and 3) accessibility - frequency with which outcome(s) are considered. The purpose of this dissertation is to develop knowledge on the impact of OEs on exercise in breast cancer survivors. This is achieved through three independent studies. First, an exploratory study to identify common OEs among breast cancer survivors. Secondly, through a measurement study, in which a scale is created and pilot tested to measure OE dimensions. Finally, an intervention is created in collaboration with active breast cancer survivors and pilot tested in a randomized controlled trial among 60 breast cancer survivors. Findings from this dissertation indicate that breast cancer survivors are overwhelmingly unaware of the extent to which exercise can benefit them. Fortunately, findings from this dissertation also indicate that the tested strategy to increase OEs is both feasible and effective among breast cancer survivors. Finally, this dissertation contributes a measure to assess intervention effects on multiple OE dimensions. In summary, findings from this dissertation indicate that targeting OEs is an effective strategy to improve the quality and duration of breast cancer survivorship and future work in this area is warranted.

Parental confidence is an important factor in gaining expertise in the parental role. The process of becoming a confident parent requires a personal belief in one’s own capacity but also the ability to engage in mastery experiences (e.g. repeated exposure to specific behaviors). Yet, this repeated exposure and ability to gain confidence in parenting may be limited when an infant requires complex care and hospitalization. The separation and limited interaction between an infant and parent alter the parenting trajectory and can halt confidence and ability to acquire parenting skills that are needed to meet the complex caregiving needs of an infant with medical complexity.

This dissertation aimed to develop knowledge related to parental confidence among parents of infants with medical complexity by clearly delineating the concept, understanding parent engagement within intensive care, exploring relevant contextual factors, and examining the development of confidence and factors contributing to change in parental confidence. The primary study conducted for this dissertation was an exploratory longitudinal multi-method study to examine the development of parental confidence, relationship between contextual factors and confidence, and the extent to which confidence, contextual factors, and parent/infant demographic characteristics predicted parent and infant outcomes. Findings demonstrated a significant increase in parental confidence over time and significant association between better family functioning and higher confidence. The higher confidence was also predictive of higher maternal psychological well-being three months after discharge. Furthermore, findings from a second mixed-methods study revealed that parents described confidence as either an emotional state of being or their ability to engage in specific behaviors. Using multiple methods to examine the development of confidence, essential knowledge was generated about how parents of infants with medical complexity gain confidence in their parental role. Recommendations for clinical practice and future research are provided to advance our understanding of parental confidence in order to positively impact parent and infant health.

This dissertation aimed to explore the barriers, facilitators, and user preferences of digital health use for diabetes self-management among Black men while also investigating clinicians’ perspectives of digital health use for clinical decision making and management of diabetes. Chapter one contains an introduction to digital health and diabetes management among Black men, followed by gaps in the literature and aims addressed within this dissertation. Chapter Two is a study designed to evaluate the barriers and facilitators to digital health use for self-management of diabetes among Black men. Chapter Three is a study intended to investigate desired design requirements for a diabetes self-management app among Black men living with diabetes with Black men as the key stakeholders. Chapter Four is a study constructed to evaluate clinicians’ perspectives of the utility of patient generated health data to guide clinical decision making and self-management of diabetes. Chapter five provides an overall review of the dissertation, a discussion on the implications of the research, study limitations, and directions for future research.

Malawi has the highest preterm birth rate in the world and preterm birth contribute to more than one-third of the neonatal deaths annually. Malawi is also faced with limited resources, both human and material. The lack of incubators led to the adoption of Kangaroo Mother Care (KMC) as routine care for preterm infants. Families also provide support, physical and emotional during this entire period. Evidence from developed countries has shown that preterm birth contributes to maternal emotional distress (depressive, anxiety, and posttraumatic stress symptoms and maternal worry about child’s health) and fewer maternal and infant interactive behaviors. The majority of published research globally has also focused on early-preterm infants and little research has been done on late-preterm infants. Studies in Malawi have also largely focused on postpartum depression and no published literature could be located on mother-infant-interactions. The purpose of this study was to explore emotional distress and mother-infant interactions of mothers with early-preterm, late-preterm, and full-term infants in Malawi.

This mixed method study and three-part investigation was conducted at Queen Elizabeth Central Hospital. The first part of the investigation was translation and validation of the Perinatal PTSD Questionnaire and the Child Health Worry Scale as measures for posttraumatic stress symptoms and maternal worry about child’s health, respectively. I conducted a focus group discussion with Malawian nurse-midwives (N=8) to assess content of translations in relation to original. I also tested the instruments on mothers in the perinatal period (N=30; 10 mothers of early-preterm infants, 10 mothers of late-preterm infants, and 10 mothers of full-term infants). Validated instruments from first phase were used in the second phase of the study. The second phase of the investigation compared emotional distress and mother infant interactions among 85 mother-infant dyads (28 mothers with their early-preterm, 29 mothers with their late-preterm, and 28 mothers with their full-term infants). Baseline assessments were done following birth for the three groups and follow-up assessments were conducted for mothers of the preterm groups. I also recorded and coded videos of mothers and infants to assess mother-infant interactions. The third phase of the investigation was qualitative (N= 19; 7 mothers with early-preterm infants, 7 mothers with late-preterm infants, and 5 mothers of full-term infants) and explored maternal perceptions of sources of concerns and social support following birth of their infants. In-depth interviews were conducted at the end of the study.

Findings showed that mothers of early-preterm infants experienced higher levels of emotional distress than mothers of full-term infants, with mothers of late-preterm infants being intermediate between the two. Cesarean birth was also associated with more anxiety and depressive symptoms. Kangaroo Mother Care had minimal effects on the change of emotional distress in mothers of the preterm groups. However, KMC interruptions were associated with an increase in emotional distress. Minimal differences were seen in mother-infant interactions among the mothers and infants of the three groups. KMC had no impact on the interactive behaviors. Mothers’ concerns during infant hospitalization were personal and family factors; prenatal and perinatal experiences; infant illness, treatments, and appearance; concerns about the infant’s outcome; loss of parental role; health care workers and the healthcare system; infant care including breastfeeding concerns; and provision of KMC. Types of support received during the hospitalization included instrumental/tangible support, emotional support including spiritual support, and financial support. Mothers also preferred to have their own family as their caregivers during hospitalization.

Future studies need to focus on longitudinal methods to explore whether emotional distress experiences change over time and also to explore maternal and infant interactive behaviors as the babies mature. The Malawi healthcare system needs to provide support for mothers throughout the prenatal and perinatal period in order to lower maternal distress symptoms and promote positive mother-infant interactions.

Abstract

Background: Children and adolescents with life-threatening illness such as cancer or undergoing blood and marrow transplantation experience significant symptom distress. Intense debilitating symptoms are the result of the disease and its treatment. Symptoms are under-recognized, under-reported and thus undertreated in children leading to a cycle of ongoing and escalating symptoms placing them at risk for overall poor outcomes and decreased quality of life. Most research to better understand symptom distress in children and adolescents with life-threatening illness has been cross-sectional. Little longitudinal research has been conducted to advance understanding of symptom dynamics (occurrences, clusters, and trajectories). Advanced understanding of symptom dynamics can lead to the development of targeted personalized symptom management strategies.

Mobile Health (mHealth) has the potential to revolutionize our understanding of illness and the associated symptom dynamics by providing dense streams of real-time patient generated health data that can be collected when and where it occurs. Having children track and report their symptoms daily not only provides longitudinal patient generated health data, but also gives their “voice” to their symptom experience. Given the prevalence of mHealth technologies and the strong developmental fit for children and adolescents, the patient generated health data they produce are likely to enhance our understanding of symptom dynamics, address knowledge gaps, and importantly inform precision health symptom management strategies.

This dissertation work was framed conceptually by the Theory of Unpleasant Symptoms (TUS). The TUS developed by Lenz guides exploration and evaluation of symptom dynamics by examining symptom characteristics (timing, intensity, duration, distress, and quality). Mobile health technology offers a unique opportunity to gather these real-time patient generated data for this purpose.

This dissertation’s purpose was to dissertation was to advance understanding of symptom dynamics (occurrences, clusters, and trajectories) in children and adolescents with life-threatening illness through the use of data from mHealth, describe and visualize these symptom data in a meaningful way, and explore patient and parent caregiver perspectives on the use of mHealth technologies to monitor symptom distress. Knowledge gained from this body of work will inform this under-researched area, address gaps in symptom research in children and adolescents, advance knowledge of symptom dynamics and importantly, lead to precision health symptom management strategies.

Methods: After reviewing the literature, a survey study was conducted to inform the design of the study mobile application (app) to be used as the one of the study data collection tools. Next a pilot study (n=10) was conducted to test the study design, procedures, mobile devices, and mobile device data transmission. Finally, the main dissertation study used an exploratory longitudinal mixed methods approach to explore the feasibility of monitoring symptoms in children and adolescents (n = 20) with life-threatening illness using mobile health technology, and developed symptom data visualizations from this data. Interviews with both patients and a parent caregiver (once during the study) were conducted to obtain their perspectives on the mobile technology use and the data visualizations.

Results: We successfully designed the study app, Technology Recordings for better Understanding Pediatric Blood and Marrow Transplant (TRU-PBMT) and Technology Recordings to better Understand Oncology for use as one of the symptom data collection tools in the preliminary and dissertation studies. Findings from the pilot study demonstrated that it was feasible to collect longitudinal symptom data on children and adolescents with life-threatening illness using a wearable and a study app. We found it necessary to use a different wearable than the original one based on participant feedback and found our study approach and procedures to be sound. The dissertation study demonstrated feasibility and acceptability for the use of two mobile devices to collect symptom data in children and adolescent with life-threatening illness. We developed data visualizations to illustrate symptom dynamics and found patients and parents to be captivated by the symptom patterns and asking to learn more. Interviews with participants and parents led to a better understanding of the use of mHealth technology in symptom management and how individuals perceive, interpret, and make meaning of data visualized from these technologies.

Conclusion: This dissertation established the feasibility and acceptability of using two mobile technologies for monitoring symptoms and further explored opportunities to visualize this data in an effective and useful manner for acutely ill children and adolescents. Knowledge generated from this work advances symptom science research and offers a framework to guide other study designs in the incorporation of mobile technologies to enhance symptom management, and improve patient outcomes. Using mobile health technologies presents new possibilities to develop precision health symptom management strategies for both acute and chronic conditions leading to improved health outcomes and quality of life.