Browsing by Author "Bettger, Janet Prvu"

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International registered report identifier (irrid)

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.

Background: Digital divide among elderly people is an emerging problem. With more adoption of technology in the health care field, we should be aware of the health inequity generated by the adoption of digital health as the norm after COVID-19 crisis. Objectives: The primary aim of this study is to evaluate the participants’ comfort with technology (self-reported digital literacy) prior to using VERA, a digital health platform for exercise therapy. The secondary aim is to examine the association of patient characteristics and digital literacy with the acceptability, treatment adherence, accuracy of exercises performed, and change in exercise over 90-day intervention. Methods: This cohort study used secondary data from the VERITAS clinical trial (clinicaltrials.gov identifier: NCT02914210). The research analyzed socio-demographics, digital health determinants, and process outcomes at 90-days. Descriptive statistics were conducted, Prevalence Ratio (PR) was used as a measure of association. Results: Participants who were older in age and had less than 16 years of education were less comfortable with technology. Less comfort with technology prior to starting therapy was not associated with lower acceptability, adherence, accuracy, nor change in days per week exercised over 90 days. We found that having a preexisting condition of neurological disorders was associated with lower self-reported adherence. Conclusion: Age and education are related to comfort using technology. We should take them into consideration at the digital health design stage. Besides, we didn’t find unequal use of VERA with the process outcomes among different strata, which means by personalized health intervention and improved usability, people who have disadvantages can also adopt technology to achieve better health. By advocating the human-centered design, digital health can benefit more people to achieve health equity on a large scale.

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The family of patients hospitalized in an intensive care unit (ICU) after a neurological event often immediately assume the role of caregiver to an individual with significant health care needs. Family/caregivers act as patient advocates and members of the care team, yet their experiences accompanying neurocritical care patients in Argentina and assuming the caregiving role are not well understood. The purpose of this study is to investigate the experiences of family members/caregivers during the time in which they assume the caregiving role as a means to better understand the relationship between patient, family/caregiver, provider, and health system in the ICU to potentially inform the development of appropriate interventions.

This study explores the use of Bronfenbrenner’s Ecological Systems Theory to ethnographically investigate the perceptions and attitudes of family/caregivers regarding their experience and relationships and interactions between patient, family, provider, and health system after an acute neurological event in Argentina. Study implementation occurred over the course of eleven weeks and included direct observation and semi-structured interviews. The initial two-week direct observation period was used to determine study feasibility and provide contextual understanding. Family/caregiver experience was investigated using 9 qualitative, semi-structured interviews with family/caregivers. Participants were selected using purposive sampling of family/caregivers of patients in a hospital ICU. Family/caregivers were unpaid family members, at least 18 years of age, and self-identified or elected by the family to speak on behalf of the family for the patient admitted to the ICU for an acute neurological event. Direct observation continued throughout the nine weeks of participant identification and interviewing after the initial two-week period to aid the investigator’s comprehensive understanding of patient and family/caregiver experience. Interviews were transcribed verbatim and translated line-by-line from Spanish to English. Iterative thematic analysis using a grounded theory approach was used to code and analyze interview transcripts. Thick description and comparison and categorization of themes were used to identify, explain, and verify patterns and develop broad themes.

Nine themes emerged based on iterative thematic analysis, including: adjusting to a changed life, managing emotions, changing role, relying on faith, redefining recovery, participating in patient care, depending on clinical experts, el trato humano, and finding unity in purpose. Patients, family/caregivers, and medical providers often interact in the ICU. While patients rely upon both providers and family/caregivers for care, family/caregivers also rely upon providers to explain prognosis and next steps, including plans for rehabilitation. Medical providers have the power to affect patient and family/caregiver experience through more than just medical care – family/caregivers perceive and place importance on interactions with providers.

Family members/caregivers form an integral part of the care team. The centrality of the patient to both family/caregiver and provider unites these two groups and emphasizes the need for recognition of the role that family/caregivers play in patient experience as a mediator between provider and patient. Exploration of family/caregiver experience can help improve patient- and family-centered care and mitigate disability and other negative health outcomes through deeper understanding of the needs and concerns of family/caregivers as they support the patient across the care continuum.

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Background

Methods

Results

Conclusions

Stroke is the fifth leading cause of death in the United States and the leading cause of disability. Historically, stroke has been considered a condition limited to older adults. However, stroke is affecting an increasing number of young and middle-aged adults. Effects of stroke may be more profound for younger adults due to the disruption in their life course at a time focused on employment, family routines, and childcare responsibilities. Beyond paid employment, there is a paucity of research on resuming meaningful life roles such as parenting. Any impairment from stroke can make it difficult to be a parent to the same extent and level of engagement as before the stroke. As parenting is a critical life role with numerous responsibilities and challenges, the intersection of parenting and stroke recovery must be explored.

The purpose of this dissertation research was to develop a better understanding of how parenting both affects and is affected by the experience of having a stroke among younger stroke survivors. The research purpose was accomplished through a systematic review examining the state of the science on parenting after stroke (chapter 2), a qualitative study assessing the parenting experiences of 10 younger survivors following stroke (chapter 3), and a longitudinal concurrent convergent mixed methods study exploring the change in health-related quality of life and acute recovery experiences among 30 younger stroke survivors with targeted analyses to explore the role of parenting (chapter 4).

Parenting tasks were severely limited following stroke, though the specific duties impacted were dependent upon the age of the child. Stroke impairments disrupted survivors’ identities, relationships, and roles as parents as well as those of their families. Parents’ heightened concern for their children and an inability to consistently meet their needs may have affected their recovery. Support from family, friends, and extended networks was vital to survivors during the recovery process. However, difficulty in accepting dependence and variation in survivors’ relationship dynamics likely influenced the role of social support. Insurance and finances, often related to employment and income changes, were determinants of access to care following hospital discharge. Accessing care allowed survivors to engage with healthcare providers who helped them to improve and manage their impairments. Coping strategies influenced survivors’ adaptation post-stroke while their level of determination contributed to their engagement in rehabilitation activities. Finally, being of younger age influenced survivors’ experiences with stroke recognition, diagnosis, and recovery. Findings from this dissertation will be used to inform future studies seeking to improve the lives, well-being, and health of younger stroke survivors living with minor children.

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