Internet ethnography: a review of methodological considerations for studying online illness blogs.

BACKGROUND: In recent history, the Internet has emerged as a wealth of archived, ongoing, interactive, and socially mediated data. Conducting Internet ethnography is a fairly new methodological approach, however, it has been previously described as a valid form of inquiry. Illness blogs, in particular, have great implications for nurse researchers, as they are able to study the experience of illness in a naturalistic and longitudinal manner, often with greater detail than data relying solely on participant recall. Participants are able to produce online illness blogs as a way to share their own illness narratives and connect with others going through similar processes. OBJECTIVES: The purpose of this paper is to discuss methodological considerations in studying online illness blogs through Internet ethnography. METHODS: This article provides an overview of Internet ethnography as an emerging qualitative method and an introduction to research using illness blogs. Through use of this method in an exemplar study of young women with cancer, key decision points are highlighted along with the study team's field experiences. CONCLUSION: Issues pertaining to method applicability, active vs. passive involvement as a researcher, ethical considerations, what constitutes data, sampling approach, procedural and analytic decisions, and thoughts regarding reflexivity and voice of the research participants' are addressed. Strengths and limitations of the study of online illness blogs through Internet ethnography in nursing science are also discussed.

Young women's experiences with complementary therapies during cancer described through illness blogs.

Many young women with cancer have a high symptom burden and negative psychosocial consequences as a result of their disease. To offset some of these experiences, a growing number of young women with cancer are writing about their experience with complementary therapies through online illness blogs. The purpose of this qualitative study was to examine descriptions of complementary therapy use among young women (diagnosed between 20 and 39 years of age) who maintained an online cancer blog. Women's narratives describe several themes of the experience of using complementary therapies including awakening, new identities (that incorporate loss), the good stuff, and release. Online illness blogs allow researchers to understand the complete experience of the patient through personal accounts and substantially contributes to the body of knowledge surrounding cancer in young adulthood and complementary therapy use.

Blogging through cancer: young women's persistent problems shared online.

BACKGROUND: Many young women have turned to illness blogs to describe their lived experience with cancer. Blogs represent an untapped source of knowledge for researchers and clinicians. OBJECTIVE: The purpose of this qualitative, exploratory study was to describe the life disruptions caused by cancer among young women, as well as to understand the facilitators and barriers in accessing healthcare services during and after active treatment. METHODS: Sixteen Internet illness blogs were analyzed among women, aged between 20 and 39 years, diagnosed with cancer. These blogs were analyzed based on phenomenological qualitative methods and thematic analysis. RESULTS: There were 4 dimensions of persistent problems that were articulated in the narratives of the young women without any relief. They included pain and fatigue, insurance and financial barriers, concerns related to fertility, and symptoms of posttraumatic stress and anxiety. CONCLUSION: The young women's narratives capture fear, uncertainty, anger, and the debilitating nature of these persistent issues. Many of the women expressed their lingering physical, psychosocial, and emotional problems. IMPLICATIONS FOR PRACTICE: Online illness narratives are a naturalistic form of inquiry that allows nurses to understand the experience of the patient through their own words and accounts. This study provides a foundation for nursing-based interventions that transcend traditional clinic experiences.

Capturing treatment decision making among patients with solid tumors and their caregivers.

PURPOSE/OBJECTIVES: To examine the feasibility and acceptability of using a decision aid with an interactive decision-making process in patients with solid tumors and their caregivers during cancer-related treatment. RESEARCH APPROACH: A phenomenologic approach was used to analyze qualitative data, with a focus on the meaning of participants' lived experiences. Interviews were conducted by telephone or in person. SETTING: Outpatient clinics at two regional cancer centers. PARTICIPANTS: 160 total individuals; 80 patients with newly diagnosed breast (n = 22), advanced-stage prostate (n = 19), or advanced-stage lung (n = 39) cancer, and their caregivers (n = 80). METHODOLOGIC APPROACH: Twenty-seven of the 80 pairs engaged in audio recorded interviews that were conducted using a semistructured interview guide. Continuous text immersion revealed themes. Validity of qualitative analysis was achieved by member checking. FINDINGS: Significant findings included three themes: (a) the decision aid helped patients and caregivers understand treatment decisions better, (b) the decision aid helped patients and caregivers to be more involved in treatment decisions, and (c) frequent contact with the study nurse was valuable. CONCLUSIONS: Decision making was more complex than participants expected. The decision aid helped patients and caregivers make satisfying treatment decisions and become integral in a shared treatment decision-making process. INTERPRETATION: Decision aids can help patients and their caregivers make difficult treatment decisions affecting quantity and quality of life during cancer treatment. The findings provide valuable information for healthcare providers helping patients and their caregivers make treatment decisions through a shared, informed, decision-making process. KNOWLEDGE TRANSLATION: Decision aids can be helpful with treatment choices. Caregivers' understanding about treatment is just as important in the decision-making process as the patients' understanding. Incorporating decision aids that are delivered by healthcare providers or trained personnel has the potential to improve patients' decision satisfaction.

Talking with death at a diner: young women's online narratives of cancer.

PURPOSE/OBJECTIVES: To gain a unique perspective of the experiences of young women with cancer (age 20-39 years at diagnosis) through analysis of their online illness blogs. DESIGN: A qualitative analysis of online narratives based on hermeneutic phenomenology. SETTING: Online illness blogs found through young adult cancer Web sites and social media sites such Twitter. SAMPLE: 16 women, aged 20-39 years, who self-identified as being diagnosed with cancer and who initiated and maintained an illness blog based on their cancer experience. METHODS: Ethnographic immersion in online culture, thematic analysis based on line-by-line coding, and construction of themes and meanings. MAIN RESEARCH VARIABLES: Transitions from diagnosis, through treatment, to long-term survivorship. FINDINGS: Themes were identified as the women processed their diagnosis: living in the middle, new normal, urgency, and transition into the abyss. CONCLUSIONS: The narratives shared on illness blogs offer an online place for expression of emotion, information exchange, and online social support. Emotional catharsis in the young women's narrative elucidated the experiences of transition through diagnosis, treatment, and survivorship that allow a better understanding of their emotional and psychosocial needs. IMPLICATIONS FOR NURSING: Illness narratives are a naturalistic form of inquiry that allow nurses to understand the experience of the patient beyond the traditional clinic setting. This initial study provides a point for understanding the content of online narratives and has vast implications for nursing-based interventions.

Incorrect surgical counts: a qualitative analysis.

Ensuring that patients remain free of unintended retained foreign bodies is a primary responsibility of perioperative nurses and surgical technologists. However, these incidents continue to occur despite hospital policies and AORN recommended practice guidelines for their prevention. To provide insight into how incorrect surgical counts occur, researchers conducted a qualitative analysis of the tasks and challenges faced by perioperative nurses and surgical technologists in an academic medical center and a community hospital. Using hermeneutic phenomenological methodology, we identified bad behavior, general chaos, and communication difficulties as problems associated with incorrect surgical counts. As point-of-care providers, perioperative RNs are well poised to identify problematic areas and design systems and processes that protect patients. Perioperative RNs should consider using red rules or a code of conduct as tools for improving the manual counting process. These strategies could be developed in the shared governance council or a perioperative staff-led committee to ensure adherence to AORN standards.

Family and friend interactions among African-American men deciding whether or not to have a prostate cancer screening.

Prostate cancer disproportionately affects African-American men. Family, friends, and trust in health care providers are factors that influence the decision making of African-American men when determining whether or not to get a prostate cancer screening done.

Breast cancer in the context of intimate partner violence: a qualitative study.

PURPOSE/OBJECTIVES: To describe the experiences of women who were diagnosed with breast cancer while also encountering intimate partner violence (IPV). IPV was determined by scores on the Women's Experience With Battering Scale and the Abuse Assessment Screen. RESEARCH APPROACH: Qualitative interviews were conducted with a convenience sample of seven women. Data were analyzed with a hermeneutic phenomenologic approach. SETTING: Community settings in central Virginia and Maryland. PARTICIPANTS: 7 participants ranging in age from 37-63 years (X = 50 years); age at diagnosis ranged from 36-58 years (X = 46 years). All were in relationships with men, and relationship length ranged from 2-29 years (X = 12 years). METHODOLOGIC APPROACH: Each participant had one semistructured qualitative interview. MAIN RESEARCH VARIABLES: Experiences of women simultaneously experiencing breast cancer and IPV. FINDINGS: A number of themes emerged, including: (a) reassessing life, (b) believing that stress from the relationship caused the cancer, (c) valuing support from others, and (d) the significance of the breast. CONCLUSIONS: For all of the participants, the breast cancer diagnosis changed their intimate relationships in some way. The cancer was an opportunity for the women to engage in life review, focus inward, and, in some cases, change the relationship status. INTERPRETATION: Increased awareness and screening for IPV are needed in oncology clinical settings. Women with cancer are members of a vulnerable population and use the diagnosis to reassess their intimate relationships.

Strategies for recruiting African American men into prostate cancer screening studies.

BACKGROUND: Recruitment for research and clinical trials continues to be challenging. Prostate cancer is the most commonly diagnosed cancer in men and disproportionately affects African American men; thus, effective recruitment strategies are essential for this population. OBJECTIVES: The aim of this study was to focus on innovative and effective recruitment strategies for research on prostate cancer with minorities. METHODS: A systematic description is provided of the recruitment efforts for a hermeneutic phenomenological qualitative study of African American men's experiences in decision making on whether to have a prostate cancer screening. RESULTS: Seventeen African American men were enrolled from rural Central Virginia. Recruiting strategies were targeted on places where African American men usually are found but that are rarely used for recruitment: barbershops, community health centers, and churches. Word of mouth was also used, and most of the participants (n = 11) were reached through this method. DISCUSSION: Recruitment efforts have been noted to be particularly challenging among minorities, for numerous reasons. Making minority recruitment a priority in any research or clinical trial is essential in gaining a representative sample. Word of mouth is a powerful tool that is often forgotten but should be looked at in further detail.

How African American men decide whether or not to get prostate cancer screening.

Prostate cancer is the most commonly diagnosed cancer in men in the United States and affects African Americans disproportionately when compared to other ethnic groups. There are unclear reasons for this disparity, but several factors may include race, nutrition, family history of cancer, and screening. With early detection of prostate cancer, survival is much better; thus, screening may be helpful, especially for high-risk individuals. Prostate cancer screening continues to be controversial. A paucity of data exists on what prostate cancer screening means to African Americans, particularly in rural areas, and how they make the decision whether or not to undergo prostate cancer screening. This study interviewed 17 African American men to explore how and when they decided about prostate cancer screening. Most of the men (n = 9) said that they had prostate cancer screening. Three themes emerged from the data: (1) these men had information on prostate cancer; (2) family and friends played an important role in the men's decision-making process; and (3) for screening, it was necessary for the men to have a trusting relationship with their healthcare provider. These findings confirm that the decision-making process is not a simple process. The study's results can help healthcare providers understand some of the important decision-making factors in prostate cancer screening for African American men.

Experiencing breast cancer in managed care.

The interest of managed care organizations (MCOs) in decreasing care and outcome variance and lowering costs has created many concerns including those pertaining to the complex and costly nature of cancer care. In this study, we used a hermeneutic phenomenological approach involving semistructured interviews of 14 women with breast cancer to examine MCO enrollees' experiences related to their cancer treatment. Results comprise two themes: managed care tasks and managing or mediating between the MCO and the cancer. These themes, and their accompanying categories, depict the increased burden encountered by women experiencing breast cancer in a managed care system who perceived that they were solely responsible for mediating between their care providers and MCO. Though enrolled in less-restrictive MCOs, participants expressed many difficulties in managing dissimilar and disconnected demands posed by the cancer and the MCO. These findings might serve as a basis for policy and practice changes to decrease this real patient burden.

Family interactions among African American prostate cancer survivors.

Prostate cancer affects African Americans at a higher rate than any other ethnic group in the United States. Prostate cancer does not only affect the man with the disease but also affects those individuals who are closest to him, such as his family and friends. Open communication is valuable in coping with stressors that are affiliated with chronic illnesses. This article focuses on family and friend social support of men with prostate cancer. Data analysis revealed that support from family members and friends plays an important role in how men cope with their treatment and recovery from prostate cancer.

Complementary and alternative medicine modality use and beliefs among African American prostate cancer survivors.

PURPOSE/OBJECTIVES: To examine the cultural beliefs and attitudes of African American prostate cancer survivors regarding the use of complementary and alternative medicine (CAM) modalities. RESEARCH APPROACH: Mixed methods with primary emphasis on a phenomenology approach. SETTING: In-person interviews in participants' homes and rural community facilities. PARTICIPANTS: 14 African American men diagnosed with and treated for prostate cancer. METHODOLOGIC APPROACH: Personal interviews using a semistructured interview guide. MAIN RESEARCH VARIABLES: Prostate cancer, CAM, African American men's health, culture, herbs, prayer, spirituality, and trust. FINDINGS: All participants used prayer often; two men used meditation and herbal preparations. All men reported holding certain beliefs about different categories of CAM. Several men were skeptical of CAM modalities other than prayer. Four themes were revealed: importance of spiritual needs as a CAM modality to health, the value of education in relation to CAM, importance of trust in selected healthcare providers, and how men decide on what to believe about CAM modalities. CONCLUSIONS: Prayer was a highly valued CAM modality among African American prostate cancer survivors as a way to cope with their disease. Medical treatment and trust in healthcare providers also were found to be important. INTERPRETATION: Most participants were skeptical of CAM modalities other than prayer. Participants expressed a strong belief in spirituality and religiosity in relationship to health and their prostate cancer. Participants' trust in their healthcare providers was important. Healthcare providers must understand how African Americans decide what to believe about CAM modalities to improve their health. This research provided valuable information for future development of culturally sensitive communication and infrastructural improvements in the healthcare system.

Inverse planning of energy-modulated electron beams in radiotherapy.

The use of megavoltage electron beams often poses a clinical challenge in that the planning target volume (PTV) is anterior to other radiosensitive structures and has variable depth. To ensure that skin as well as the deepest extent of the PTV receives the prescribed dose entails prescribing to a point beyond the depth of peak dose for a single electron energy. This causes dose inhomogeneities and heightened potential for tissue fibrosis, scarring, and possible soft tissue necrosis. Use of bolus on the skin improves the entrant dose at the cost of decreasing the therapeutic depth that can be treated. Selection of a higher energy to improve dose homogeneity results in increased dose to structures beyond the PTV, as well as enlargement of the volume receiving heightened dose. Measured electron data from a linear accelerator was used as input to create an inverse planning tool employing energy and intensity modulation using bolus (e-IMRT). Using tools readily available in a radiotherapy department, the applications of energy and intensity modulation on the central axis makes it possible to remove hot spots of 115% or more over the depths clinically encountered. The e-IMRT algorithm enables the development of patient-specific dose distributions with user-defined positions of peak dose, range, and reduced dose to points beyond the prescription point.

Making use of qualitative research.

Many have discussed the importance of using research in practice. To understand this issue, we examined what authors of qualitative research in oncology said about the uses of their research findings. Analysis ofthe authors' implications sections was conducted with 42 articles published between 1995 and 2001 and indexed in either Medline or CINAHL The two categories from this analysis were implications for future research and communication. The categories and related subcategories are illustrated with selected quotes from some of the articles. Findings confirm the importance of language in health and illness.