Improving the health and well-being of women at risk for neural tube defect recurrence

There is growing interest in providing women with internatal care, a package of healthcare and ancillary services that can improve their health during the period after the termination of one pregnancy but before the conception of the next pregnancy. Women who have had a pregnancy affected by a neural tube defect can especially benefit from internatal care because they are at increased risk for recurrence and improvements to their health during the inter-pregnancy period can prevent future negative birth outcomes. The dissertation provides three papers that inform the content of internatal care for women at risk for recurrence by examining descriptive epidemiology to develop an accurate risk profile of the population, assessing whether women at risk for recurrence would benefit from a psychosocial intervention, and determining how to improve health promotion efforts targeting folic acid use.^ Paper one identifies information relevant for developing risk profiles and conducting risk assessments. A number of investigations have found that the risk for neural tube defects differs between non-Hispanic Whites and Hispanics. To understand the risk difference, the descriptive epidemiology of spina bifida and anencephaly was examined for Hispanics and non-Hispanic Whites based on data from the Texas Birth Defects Registry for the years 1999 through 2004. Crude and adjusted birth prevalence ratios and corresponding 95% confidence intervals were calculated between descriptive epidemiologic characteristics and anencephaly and spina bifida for non-Hispanic Whites and for Hispanics. In both race/ethnic groups, anencephaly expressed an inverse relationship with maternal age and a positive linear relationship with parity. Both relationships were stronger in non-Hispanic Whites. Female infants had a higher risk for anencephaly in non-Hispanic Whites. Lower maternal education was associated with increased risk for spina bifida in Hispanics.^ Paper two assesses the need for a psychosocial intervention. For mothers who have children with spina bifida, the transition to motherhood can be stressful. This qualitative study explored the process of becoming a mother to a child with spina bifida focusing particularly on stress and coping in the immediate postnatal environment. Semi-structured interviews were conducted with six mothers who have children with spina bifida. Mothers were asked about their initial emotional and problem-based coping efforts, the quality and kind of support provided by health providers, and the characteristics of their meaning-based coping efforts; questions matched Transactional Model of Stress and Coping (TMSC) constructs. Analysis of the responses revealed a number of modifiable stress and coping transactions, the most salient being: health providers are in a position to address beliefs about self-causality and prevent mothers from experiencing the repercussions that stem from maintaining these beliefs. ^ Paper three identifies considerations when creating health promotion materials targeting folic acid use. A brochure was designed using concepts from the Precaution Adoption Process Model (PAPM). Three focus groups comprising 26 mothers of children with spina bifida evaluated the brochure. One focus group was conducted in Spanish-only, the other two focus groups were conducted in English and Spanish combined. Qualitative analysis of coded transcripts revealed that a brochure is a helpful adjunct. Questions about folic acid support the inclusion of an insert with basic information. There may be a need to develop different educational material for Hispanics so the importance of folic acid is provided in a situational context. Some participants blamed themselves for their pregnancy outcome which may affect their receptivity to messages in the brochure. The women's desire for photographs that affect their perception of threat and their identification with the second role model indicate they belong to PAPM Stage 2 and 3. Participants preferred colorful envelopes, high quality paper, intimidating photographs, simple words, conversational style sentences, and positive messages.^ These papers develop the content of risk assessment, psychosocial intervention, and health promotion components of internatal care as they apply to women at risk for recurrence. The findings provided evidence for considering parity and maternal age when assessing nutritional risk. The two dissimilarities between the two race/ethnic groups, infant sex and maternal education lent support to creating separate risk profiles. Interviews with mothers of children with spina bifida revealed the existence of unmet needs-suggesting that a psychosocial intervention provided as part of internatal care can strengthen and support women's well-being. Segmenting the audience according to race/ethnicity and PAPM stage can improve the relevance of print materials promoting folic acid use.^

THE INTERACTION BETWEEN INTERNAL AND EXTERNAL INFORMATION ON RELATIONAL DATA SEARCH

People often use tools to search for information. In order to improve the quality of an information search, it is important to understand how internal information, which is stored in user’s mind, and external information, represented by the interface of tools interact with each other. How information is distributed between internal and external representations significantly affects information search performance. However, few studies have examined the relationship between types of interface and types of search task in the context of information search. For a distributed information search task, how data are distributed, represented, and formatted significantly affects the user search performance in terms of response time and accuracy. Guided by UFuRT (User, Function, Representation, Task), a human-centered process, I propose a search model, task taxonomy. The model defines its relationship with other existing information models. The taxonomy clarifies the legitimate operations for each type of search task of relation data. Based on the model and taxonomy, I have also developed prototypes of interface for the search tasks of relational data. These prototypes were used for experiments. The experiments described in this study are of a within-subject design with a sample of 24 participants recruited from the graduate schools located in the Texas Medical Center. Participants performed one-dimensional nominal search tasks over nominal, ordinal, and ratio displays, and searched one-dimensional nominal, ordinal, interval, and ratio tasks over table and graph displays. Participants also performed the same task and display combination for twodimensional searches. Distributed cognition theory has been adopted as a theoretical framework for analyzing and predicting the search performance of relational data. It has been shown that the representation dimensions and data scales, as well as the search task types, are main factors in determining search efficiency and effectiveness. In particular, the more external representations used, the better search task performance, and the results suggest the ideal search performance occurs when the question type and corresponding data scale representation match. The implications of the study lie in contributing to the effective design of search interface for relational data, especially laboratory results, which are often used in healthcare activities.

A project to improve the information seeking skills and increase the use of evidence-based research in public health practice

The ability of public health practitioners (PHPs) to work efficiently and effectively is negatively impacted by their lack of knowledge of the broad range of evidence-based practice information resources and tools that can be utilized to guide them in their development of health policies and programs. This project, a three-hour continuing education hands-on workshop with supporting resources, was designed to increase knowledge and skills of these resources. The workshop was presented as a pre-conference continuing education program for the Texas Public Health Association (TPHA) 2008 Annual Conference. Topics included: identification of evidence-based practice resources to aid in the development of policies and programs; identification of sources of publicly available data; utilization of data for community assessments; and accessing and searching the literature through a collection of databases available to all citizens of Texas. Supplemental resources included a blog that served as a gateway to the resources explored during the presentation, a community assessment workbook that incorporates both Healthy People 2010 objectives and links to reliable sources of data, and handouts providing additional instruction on the use of the resources covered during the workshop.^ Before- and after-workshop surveys based on Kirkpatrick's 4-level model of evaluation and the Theory of Planned Behavior were administered. Of the questions related to the trainer, the workshop, and the usefulness of the workshop, participants gave "Good" to "Excellent" responses to all one question. Confidence levels overall increased a statistically significant amount; measurements of attitude, social norms, and control showed no significant differences before and after the workshop. Lastly, participants indicated they were likely to use resources shown during the workshop within a one to three month time period on average. ^ The workshop and creation of supplemental resources served as a pilot for a funded project that will be continued with the development and delivery of four 4-week long webinar-based training sessions to be completed by December 2008. ^

Theory of uncertainty in illness in patients with cancer of unknown primary origin: Structure providers as antecedents of uncertainty in a population of cancer patients with an unknown primary diagnosis

Uncertainty has been found to be a major component of the cancer experience and can dramatically affect psychosocial adaptation and outcomes of a patient's disease state (McCormick, 2002). Patients with a diagnosis of Carcinoma of Unknown Primary (CUP) may experience higher levels of uncertainty due to the unpredictability of current and future symptoms, limited treatment options and an undetermined life expectancy. To date, only one study has touched upon uncertainty and its' effects on those with CUP but no information exists concerning the effects of uncertainty regarding diagnosis and treatment on the distress level and psychosocial adjustment of this population (Parker & Lenzi, 2003). ^ Mishel's Uncertainty in Illness Theory (1984) proposes that uncertainty is preceded by three variables, one of which being Structure Providers. Structure Providers include credible authority, the degree of trust and confidence the patient has with their doctor, education and social support. It was the goal of this study to examine the relationship between uncertainty and Structure Providers to support the following hypotheses: (1) There will be a negative association between credible authority and uncertainty, (2) There will be a negative association between education level and uncertainty, and (3) There will be a negative association between social support and uncertainty. ^ This cross-sectional analysis utilized data from 219 patients following their initial consultation with their oncologist. Data included the Mishel Uncertainty in Illness Scale (MUIS) which was used to determine patients' uncertainty levels, the Medical Outcomes Study-Social Support Scale (MOSS-SSS) to assess patients, levels of social support, the Patient Satisfaction Questionnaire (PSQ-18) and the Cancer Diagnostic Interview Scale (CDIS) to measure credible authority and general demographic information to assess age, education, marital status and ethnicity. ^ In this study we found that uncertainty levels were generally higher in this sample as compared to other types of cancer populations. And while our results seemed to support most of our hypothesis, we were only able to show significant associations between two. The analyses indicated that credible authority measured by both the CDIS and the PSQ was a significant predictor of uncertainty as was social support measured by the MOSS-SS. Education has shown to have an inconsistent pattern of effect in relation to uncertainty and in the current study there was not enough data to significantly support our hypothesis. ^ The results of this study generally support Mishel's Theory of Uncertainty in Illness and highlight the importance of taking into consideration patients, psychosocial factors as well as employing proper communication practices between physicians and their patients.^