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.

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.

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.

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.

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.