Biomedical subjects

John W Creswell

Publications and source records attributed to John W Creswell.

6 recordsLinked to original sources

PubMed2006

Patients, privacy and trust: patients' willingness to allow researchers to access their medical records.

The federal Privacy Rule, implemented in the United States in 2003, as part of the Health Insurance Portability and Accountability Act of 1996 (HIPAA), created new restrictions on the release of medical information for research. Many believe that its restrictions have fallen disproportionately on researchers prompting some to call for changes to the Rule. Here we ask what patients think about researchers' access to medical records, and what influences these opinions. A sample of 217 patients from 4 Veteran Affairs (VA) facilities deliberated in small groups at each location with the opportunity to question experts and inform themselves about privacy issues related to medical records research. After extensive deliberation, these patients were united in their inclination to share their medical records for research. Yet they were also united in their recommendations to institute procedures that would give them more control over whether and how their medical records are used for research. We integrated qualitative and quantitative results to derive a better understanding of this apparent paradox. Our findings can best be presented as answers to questions related to five dimensions of trust: Patients' trust in VA researchers was the most powerful determinant of the kind of control they want over their medical records. More specifically, those who had lower trust in VA researchers were more likely to recommend a more stringent process for obtaining individual consent. Insights on the critical role of trust suggest actions that researchers and others can take to more fully engage patients in research.

Aged↗

PubMed2006

Waiting for a liver transplant.

The waiting period for liver transplantation is a difficult time fraught with uncertainty and associated with a high rate of morbidity and mortality. To understand better what it means for a transplant patient to wait, the authors explore in this phenomenological study the meaning that people with liver failure ascribe to the experience of waiting for a transplant. They conducted 9 interviews using phenomenological methods of inquiry as a guide for analysis. Eight core themes emerged from 146 significant statements and corresponding meaning units. The experience of waiting includes transformations, doctors, teams and trust, elation to despair, loss, questioning the process, searching, coping, and the paradox of time. The essence of the experience is discussed in light of the theory of chronic illness as a disruption of biographical narrative. The authors highlight implications for the transplant teams and other health care providers.

Humans↗

PubMed2005

The needs of AIDS-infected individuals in rural China.

The purpose of this exploratory case study was to describe the needs and present the voices of 21 AIDS-infected individuals who contracted the disease through the selling of blood in rural China. Data sources included interviews, field notes, and letters. Three themes emerged: living in a vicious circle, awakening from the dead end, and escaping the vicious circle through education. Education emerged as an overarching theme and was identified as the catalyst that would either keep the families of those affected trapped in the vicious circle or rescue them from it. Findings are explained within the theoretical contexts of social capital, motivation theory, and Confucius's philosophy on education. The authors discuss implications for researchers, educators, relief workers, human service workers, policy makers, and human rights advocates. They conclude with suggestions for further study.

Adult↗

PubMed2004

Developing a Web site in primary care.

BACKGROUND AND OBJECTIVES: While content, navigability, and usability are essential qualities of effective Web sites, the health care literature contains limited discussion of these issues. This article describes how knowledge gained through focus groups, Web site searches, and individual interviews were used to develop and improve a health-related Web site. METHODS: We conducted 10 focus groups and searches of existing Web sites in preparation for developing a Web site about colorectal cancer (CRC) screening. We conducted 30 in-depth interviews to assess content, navigation, and usability of a new CRC Web site, using participants recruited from Michigan communities with a low incidence of CRC testing. Targeted participants were 50-70 years of age, had no prior experience with CRC testing, and had variable comfort levels with Internet use. RESULTS: Existing CRC screening Web sites uniformly use user-directed navigation and have little variation in content. Our study participants stimulated revisions in content, navigation, and usability. Revised content factors included comprehension, utility, and appeal. Navigation changes focused on logical transition between sections. Usability changes included user focus and clarity of graphics/ text. CONCLUSIONS: We found focus groups, Web site searches, and individual interviews useful in developing and testing content, navigation, and usability of a CRC screening Web site. These steps provide methodological procedures for developing and revising health-related Web sites.

Aged↗

PubMed2002

In conversation: high school students talk to students about tobacco use and prevention strategies.

The purpose of this multi-site qualitative study is to explore how adolescents talk about tobacco use. Sixty-six students in four high schools became co-researchers and led focus group interviews with 205 fellow students. From the interviews, the authors develop a story line that reports how adolescents begin smoking, how smoking becomes a pervasive influence, how attitudes form about smoking, what it means to be a smoker, and, ultimately, student suggestions for tobacco use prevention. Embedded within this story line are complex questions and contradictions. We explore whether peers really are influential, if the media is important, whether smoking is a matter of personal choice, if schools actually promote tobacco use, and whether adolescents can quit smoking.

Adolescent↗

PubMedDate not supplied

Designing a mixed methods study in primary care.

BACKGROUND: Mixed methods or multimethod research holds potential for rigorous, methodologically sound investigations in primary care. The objective of this study was to use criteria from the literature to evaluate 5 mixed methods studies in primary care and to advance 3 models useful for designing such investigations. METHODS: We first identified criteria from the social and behavioral sciences to analyze mixed methods studies in primary care research. We then used the criteria to evaluate 5 mixed methods investigations published in primary care research journals. RESULTS: Of the 5 studies analyzed, 3 included a rationale for mixing based on the need to develop a quantitative instrument from qualitative data or to converge information to best understand the research topic. Quantitative data collection involved structured interviews, observational checklists, and chart audits that were analyzed using descriptive and inferential statistical procedures. Qualitative data consisted of semistructured interviews and field observations that were analyzed using coding to develop themes and categories. The studies showed diverse forms of priority: equal priority, qualitative priority, and quantitative priority. Data collection involved quantitative and qualitative data gathered both concurrently and sequentially. The integration of the quantitative and qualitative data in these studies occurred between data analysis from one phase and data collection from a subsequent phase, while analyzing the data, and when reporting the results. DISCUSSION: We recommend instrument-building, triangulation, and data transformation models for mixed methods designs as useful frameworks to add rigor to investigations in primary care. We also discuss the limitations of our study and the need for future research.

Health Services Research↗