Rebekah Hamilton

Internet Recruitment and E-Mail Interviews in Qualitative Studies

In 2004, 111 million adults accessed the Internet looking for health and medical information. Qualitative researchers can apply long-standing principles of recruitment and interviewing to the Internet. The purpose of this article is to examine the theoretical and methodological aspects of Internet recruitment and e-mail interviewing. The authors address issues of appropriateness, adequacy, representativeness, sample bias, data fraud, flexibility and consistency in interviewing, timing, elimination of the need for transcription, oral versus written communication, reliability and validity, and ethical concerns. They include some practical suggestions on a research design for a qualitative study employing both Internet recruitment and e-mail interviewing.

THE EFFECT OF BRCA GENE TESTING ON FAMILY RELATIONSHIPS: A THEMATIC ANALYSIS OF QUALITATIVE INTERVIEWS

Discovery of mutations in the breast and ovarian cancer susceptibility genes BRCA1 and BRCA2 can have emotional consequences for both the tested individual and his or her relatives. This secondary analysis study investigated how BRCA testing impacts family dynamics and relationships. For the original study, a grounded theory inquiry, participants were recruited from a hereditary breast/ovarian cancer syndrome support website and open-ended interviews were performed asking about individual and family experiences after BRCA testing. All 12 participants whose interviews were included in the secondary analysis had a BRCA mutation. For the secondary analysis, thematic analysis was conducted and revealed three main themes characterizing the effect of BRCA testing on family relationships: 1. That the first in the family to have testing or seek genetic counseling takes on a special family role that can be difficult for them; 2. That discussions in the family often change; and 3. That individuals may feel more or less connected to certain family members. These changes seemed to relate to family cancer history, relationships, coping strategies, communication patterns, and mutation status. Genetic counselors might find it useful to explore these issues in order to prepare clients before BRCA testing and to support them through shifts in family dynamics after disclosure of results.

I could lose everything: understanding the cost of a brain tumor

Although studies have quantified the costs of cancer treatment, few have evaluated the widespread impact of cancer costs on the family unit. Specifically, little is known regarding how cancer affects patients and their families financially, and how they cope with these costs. The purpose of this descriptive study was to explore the financial impact of cancer care in neuro-oncology. Content analysis was used to examine data from interviews with 20 adults receiving treatment for a primary malignant brain tumor. Participants were recruited from across the United States through an advertisement in a national support group newsletter. Four major themes were identified -“paying for medication/healthcare”, “strategies to offset costs”, “impact of cancer costs”, and “fear/uncertainty”. Within the major themes several sub-themes were also recognized. In the theme of paying for medication/healthcare, participants emphasized sub-themes such as frustrations over “not qualifying/red tape” and being “thankful” for what was covered. Some of the strategies used to offset cancer costs included “cashing in” and relying on “family/friends” for financial support. When describing the impact of cancer costs, participants mentioned sub-themes including the “cost to their family”, the “cost of their disability”, and the impact of a “change in income/job”. Results elucidate the financial concerns and coping strategies of persons undergoing treatment for cancer. These data help target patients’ support needs during treatment, such as providing for their family and navigating their insurance policies, and suggest more efficient implementation of financial interventions are needed to alleviate the emotional burden of cancer costs.

The Theory of Genetic Vulnerability: A Roy Model Exemplar:

The purpose of this study was to explore the experience of adult genetic testing. Grounded theory was used to plan, guide, and analyze in-depth interviews with 29 participants. The theory of genetic vulnerability was developed and is composed of five concepts: (a) experiencing the family disease, (b) testing for a mutation, (c) fore-grounding inherited disease risk, (d) responding to knowledge of genetic vulnerability, and (e) altering or avoiding the family experience of inherited disease. Roys model of adaptation is discussed as a valuable lens through which to test and adapt this theory.

Living with genetic test results for hereditary breast and ovarian cancer

PURPOSE To examine adaptation by nonsymptomatic individuals who knew the results of a genetic test for hereditary breast and ovarian cancer (HBOC) for at least 4 years. DESIGN Longitudinal grounded theory study. METHODS Follow-up interviews after a 3- to 4-year interval were conducted by telephone or e-mail with seven asymptomatic participants originally recruited for an earlier study of genetic testing experiences. A total of 14 interviews, 2 for each participant were conducted. Conceptual analysis on these 14 interviews focused on impact on daily life and health behavior decisions made in the intervening years. FINDINGS Participants described the impact of the result and adaptations made in relationships, sexuality, outlook, and plans for the future. Participants accepted recommended surveillance and preventative measures to maximize a healthy lifestyle and reported both the benefits of knowing their mutation status as well as challenges they had encountered since testing. CONCLUSIONS Adaptation to living with genetic test results indicating a disease-related mutation is an ongoing process of balancing the knowledge of risk with living a normal life. Over time, awareness of genetic risk does not appear to diminish. CLINICAL RELEVANCE Positive and negative long-term consequences of genetic testing for hereditary breast or ovarian cancer may influence many aspects of the personal lives and health care decisions of those tested.

Conditions and Consequences of a BRCA Mutation in Young, Single Women of Childbearing Age

PURPOSE/OBJECTIVES To explore the experiences of young, single women who are at increased risk for hereditary breast and ovarian cancer (HBOC) because of a BRCA mutation. RESEARCH APPROACH Qualitative. SETTING Seven states and Canada. PARTICIPANTS 11 single women aged 18-35 years who tested positive for a BRCA mutation. METHODOLOGIC APPROACH Grounded theory with in-depth individual interviews conducted via e-mail or telephone. FINDINGS Analysis resulted in three conditions and three consequences. Conditions were dating or not dating, time in a relationship, and physical impact of surgery or breast cancer treatment. Consequences were explaining their choices, experiencing a sense of urgency, and experiencing a sense of loss. CONCLUSIONS Young women who are at risk for HBOC face a complex array of decisions after finding out that they carry a BRCA mutation. Being single and childless adds to this complexity. INTERPRETATION Nurses can listen to young women with HBOC risk, help them clarify their fears and understanding of their risk, and provide nonthreatening support that goes beyond simply providing more information and includes a nonjudgmental understanding of the young womens experience.

Nursing advocacy in a postgenomic age.

The Human Genome Project will change how health is defined and how disease is prevented, diagnosed, and treated. As the largest group of health care providers in contact with patients, nurses need to be competent in the science of genetics. Beyond this, nurses need to understand the complexities that arise in genomic health care. Ethical, legal, and social issues are integral to the delivery of genomic health care, and nurses must have an astute understanding of such complexities. What it means to know, to reason, and to act in this postgenomic age is explored.

Genetics: Breast Cancer as an Exemplar

Genetic testing for adult-onset diseases is now available. One such test is for the mutations present in the BRCA gene that result in a significantly higher risk for the development of breast cancer or ovarian cancer. Women who have one of these mutations face difficult choices in terms of increased surveillance or prophylactic surgeries. Examining experiences of women with BRCA mutations can serve as an exemplar for other populations at risk for genetically associated adult-onset diseases.