Psychosexual responses to BRCA gene mutations in women of childbearing age.

BACKGROUND: Diagnosis of a BRCA gene mutation presents a dilemma because life-changing medical decisions must be made to prevent breast and ovarian cancer. There is minimal evidence regarding how psychosexual functioning, psychological well-being with regard to body image and sexuality, affects the decision to have prophylactic treatment in women of childbearing age (WCBA; 18-49 years) with a BRCA gene mutation. PURPOSE: To explore, describe, and interpret the experience of women with a BRCA mutation during the treatment and decision-making process. METHODOLOGY: A qualitative descriptive design was used to recruit participants online through social media postings and from national and local BRCA support groups. Participants participated in semistructured interviews exploring their experience after BRCA diagnosis. Interpretive descriptive analysis was used to identify themes. RESULTS: The purposive sample comprised 18 women aged 21-49 years. Four major themes, such as body image, sexuality, femininity, and childbearing/childrearing, were identified that influenced decisions related to the diagnosis and management of a BRCA mutation. All participants voiced that concerns regarding body image and sexuality caused hesitancy in their decision to have prophylactic surgery. Women who had undergone bilateral prophylactic mastectomy were concerned about the impact of the surgery, scarring, breast disfigurement, and the lack of sensation resulting from surgical intervention. CONCLUSIONS: Psychosexual concerns arise from internal and external influences that significantly affect the decision to undergo prophylactic measures. Therefore, body image, sexuality, and sexual orientation should all be addressed during the decision-making process. IMPLICATIONS: Provider communication and preparation for realistic surgical outcomes can be improved to assist WCBA throughout the decision-making process and enhance psychosexual functioning.

Interconnection: A qualitative analysis of adjusting to living with renal cell carcinoma.

ABSTRACTObjective:Adjusting to cancer is an ongoing process, yet few studies explore this adjustment from a qualitative perspective. The aim of our qualitative study was to understand how patients construct their experience of adjusting to living with cancer. METHOD: Qualitative analysis was conducted of written narratives collected from four separate writing sessions as part of a larger expressive writing clinical trial with renal cell carcinoma patients. Thematic analysis and constant comparison were employed to code the primary patterns in the data into themes until thematic saturation was reached at 37 participants. A social constructivist perspective informed data interpretation. RESULTS: Interconnection described the overarching theme underlying the process of adjusting to cancer and involved four interrelated themes: (1) discontinuity-feelings of disconnection and loss following diagnosis; (2) reorientation-to the reality of cancer psychologically and physically; (3) rebuilding-struggling through existential distress to reconnect; and (4) expansion-finding meaning in interconnections with others. Participants related a dialectical movement in which disruption and loss catalyzed an ongoing process of finding meaning. SIGNIFICANCE OF RESULTS: Our findings suggest that adjusting to living with cancer is an ongoing, iterative, nonlinear process. The dynamic interactions between the different themes in this process describe the transformation of meaning as participants move through and revisit prior themes in response to fluctuating symptoms and medical news. It is important that clinicians recognize the dynamic and ongoing process of adjusting to cancer to support patients in addressing their unmet psychosocial needs throughout the changing illness trajectory.

Exceptional patients and communication in cancer care-are we missing another survival factor?

OBJECTIVE: There is increased awareness of the issue of exceptional survival beyond expectations among cancer patients with poor prognosis, and researchers are starting to look closely at this phenomenon. In this study, we explored the perceptions of these "exceptional patients" as to their understanding and insight into their unusual experience. METHODS: We used a qualitative approach consisting of in-depth, open-ended interviews with exceptional patients in two locations, Texas and Israel, from 2007 to 2014. The interviews were audio-recorded and qualitatively analyzed, and gave rise to illness narratives entailing detailed descriptions of patients experience over the course of their disease and treatment. A qualitative content analysis focusing on contextual meaning was utilized. RESULTS: Twenty-nine patients participated in our study. The mean years since diagnosis was 9.55 years (range, 4-23 years). All patients had received conventional treatment, including surgery, chemotherapy, and radiation therapy. One of the prevailing themes in these interviews was related to the patient-doctor relationship. Most participants mentioned that the support they received from one or more physicians was a crucial factor for their exceptional survival. CONCLUSION: The significance of patient-doctor relationship in cancer survival requires further research. This research is especially important as it adds to the current trend of patient centered care and points to the added value of relationship between health providers and patients. This relationship, as perceived by these exceptional patients, can be a factor that adds to improved survival in cancer care.

Experiences of paradox: a qualitative analysis of living with cancer using a framework approach.

OBJECTIVES: Life-threatening diseases such as cancer represent unique traumas-compared with singular, time-limited traumatic events-given their multidimensional, uncertain, and continuing nature. However, few studies have examined the impact of cancer on patients as a persistent stressor. The aim of this qualitative study is to explore patients' ongoing experiences of living with cancer and the changes encountered in this experience over time. METHODS: Written reflections to three open-ended questions collected from 28 patients on their experience of cancer at two time points were analyzed to explore participants' experiences and perspectives over time. Content analysis using a framework approach was employed to code, categorize, and summarize data into a thematic framework. RESULTS: Data analysis yielded the thematic framework-living with paradox, consisting of four interrelated themes: sources, experiences, resolution of paradox, and challenges with medical culture/treatment. The primary theme concerned moving through a dualistic and complex cancer experience of concurrently negative and positive emotional states across the course of cancer. CONCLUSIONS: Respondents indicated that cycling through this contradictory trajectory was neither linear, nor singular, nor conclusive in nature, but reiterative across time. Recognition that patients' cancer experience may be paradoxical and tumultuous throughout the cancer trajectory can influence how practitioners provide patients with needed support during diagnosis, treatment, and recovery. This also has implications for interventions, treatment, and care plans, and adequately responding to the diversity of patient's psychosocial, physical, existential, and spiritual experience of illness.

Exploring the Cancer Experiences of Young Adults in the Context of Stem Cell Transplantation.

BACKGROUND: Cancer is the leading cause of nonaccidental morbidity and mortality among young adults (YAs) in the United States. Stem cell transplantation (SCT), a treatment modality for a variety of YA malignancies, often requires prolonged hospitalization and immune-compromising treatment regimens. Stem cell transplantation may isolate YAs physically and emotionally, contributing to uncertainty about treatment processes, outcomes, and long-term sequelae. Studies in this population suggest that uncertainty can contribute to difficulty accomplishing basic developmental tasks. Few studies have examined the experiences of YAs in active cancer treatment, particularly those undergoing SCT. OBJECTIVES: This study explored the cancer experiences of YAs aged 18 to 25 years leading up to SCT and explored how YAs construct issues of uncertainty related to the transplantation experience. METHODS: Interviews with 14 YAs conducted within 24 hours of admission to undergo SCT were analyzed using thematic analysis from a medical ethnographic perspective. RESULTS: Themes emerged within 2 domains: relational and psychoemotional. The relational theme of "altered relationships" included the subthemes of "moving from" and "moving toward." The psychoemotional theme of the "power of perspective" included the subthemes of "optimism," "acknowledgment of death," "informational empowerment," and "developing a new outlook." CONCLUSIONS: Our findings offer new insights into the YA experience in the context of active cancer treatment, specifically how the cancer experience impacts relationships and how this experience is influenced by YAs' perspectives. IMPLICATIONS FOR PRACTICE: This study provides a foundation for addressing the psychosocial needs of YAs hospitalized for SCT, paying particular attention to the development of specific interventions.

Exceptional patients: narratives of connections.

OBJECTIVE: This study sought to better understand the patient s perspective of the experience of recovery from cancer that appeared to defy medical prognoses. METHODS: Fourteen cases of medically verified exceptional outcomes were identified. A qualitative approach, employing long narrative interviews was used. Data was analyzed using a cross case thematic analytic approach. RESULTS: The major overarching theme was connections, both internal and external. Internal included connections with God or a higher power and with oneself. The external connections, the focus of this paper, included 1) personal connections with friends and family, 2) connections with the medical system: the physician, nurses and other staff, and 3) connections with other patients. They described the nature of these relationships and the importance of frequent contact with family and friends as providing significant emotional and instrumental support. They expressed confidence in receiving care from a reputable clinic, and with very little probing illustrated the importance of the relationship with their providers. They articulated the significance of the compassionate qualities of the physician and identified communication attributes of their physician that were important in establishing this connection. These attributes were demeanor, availability, honesty, sensitivity in the decision making process. They provided examples of positive connections with nurses and other staff as well as with other patients through their illness process. SIGNIFICANCE OF RESULTS: The importance of connections in these illness narratives was richly illustrated. These issues often are overlooked in clinical settings; yet they are of crucial importance to the health and well-being of the patients.

"I'm just not that sick": pain medication and identity in Mexican American women with chronic pain.

PURPOSE: To describe the beliefs and attitudes about self-identity and pain medication in a sample of Mexican American women with chronic pain living in the El Paso, Texas, area. The findings are drawn from a larger qualitative study of 15 women describing the expression and communication of chronic pain symptoms, pain-related cultural beliefs, decision making, and treatment preferences of chronic pain. METHODS: Participants who had chronic pain syndromes for at least 1 year were recruited from a pain clinic and fibromyalgia support group. In-depth, open-ended interviews, fieldwork, and participant observation were used to gather information using a focused clinical ethnographic approach. Interviews were audiotaped and transcribed verbatim. FINDINGS: A shared central theme was controlling the use of pain medications to control perceived negative associations with pain medication. The negative associations resulted in women rejecting use of medication to preserve their legitimate identity. This perception can be destructive and can lead to poor pain control. CONCLUSION: Providing patients with anticipatory guidance about common barriers to taking pain medication may allow medication use consistent with improved pain control.

Activism among exceptional patients with cancer.

BACKGROUND: The "exceptional patients" with cancer are survivors who had advanced cancer considered incurable by medical report and who subsequently became disease-free or experienced unexplained survival time given the nature of their disease or treatment. This experience is a puzzling phenomenon that has not been formally investigated in a cancer population. The purpose of this study was to understand exceptional patients' accounts of their experience. MATERIALS AND METHODS: This study used a narrative approach with a cross-case thematic analysis. Recruitment took place at health care centers in the USA and Israel. Oncologists in both centers were asked to identify patients who had an exceptional disease course. Patients were then contacted and interviewed; an audio recording was made of each narrative account and then transcribed. Interviews and thematic analyses were conducted independently at each site. These thematic findings from each site were discussed with both research teams and a common underlying theme was identified, which is the focus of this report. RESULTS: Twenty-six participants were interviewed: 14 from the USA and 12 from Israel. All the participants have had advanced disease with a range of diagnoses that included breast, colorectal, pancreatic, ovarian cancer, glioblastoma multiforme, and others. The main recurrent theme from both the US and Israeli sites was personal activism. This was manifested in taking charge and getting involved in the process of diagnosis and treatment, as well as becoming more altruistic in their relationships with others. In many cases, this was reflected in a change in a philosophy about life. CONCLUSIONS: In this study, we found that activism was a major theme that was independently observed in both Israel and the U.S.A. This has implications for health care providers to facilitate patient engagement in the care and treatment of their disease. Further research on this phenomenon is needed.

Medical care of hepatitis B among Asian American populations: perspectives from three provider groups.

BACKGROUND: Physicians can play a significant role in helping to decrease the hepatitis B virus (HBV) burden among Asian Americans. Few studies have described knowledge and practice patterns in the medical community among different provider types regarding HBV and liver cancer. OBJECTIVE: Our study explores the HBV beliefs, attitudes and practice patterns of medical providers serving Asian American communities. DESIGN: We conducted three focus groups with primary care providers, liver specialists, and other providers predominantly serving Asian American community. We asked about practices and barriers to appropriate medical care and outreach. PARTICIPANTS: We moderated three focus groups with 23 participants, 18 of whom completed and returned demographic surveys. Twelve were of Asian ethnicity and 13 spoke English as a second language. Only eight screened at least half of their patients, most (72%) using the hepatitis B surface antigen test. APPROACH: We used grounded theory methods to analyze focus group transcripts. RESULTS: Participants frequently discussed cultural and financial barriers to hepatitis care. They admitted reluctance to screen for HBV because patients might be unwilling or unable to afford treatment. Cultural differences were discussed most by primary care providers; best methods of outreach were discussed most by liver specialists; and alternative medicine was discussed most by acupuncturists and other providers. CONCLUSIONS: More resources are needed to lower financial barriers complicating HBV care and encourage providing guideline-recommended screenings. Other providers can help promote HBV screening and increase community and cultural awareness.

Challenges to complementary and alternative medical research: focal issues influencing integration into a cancer care model.

Complementary and alternative therapies are increasingly used by cancer patients for palliative and postcancer preventive and/or wellness care. It is critical that evidence-based models be employed to both provide information for patients' use and informed consent and for physicians to advise patients and assess relative risk:benefit ratios of using specific complementary and alternative medicine (CAM) approaches within the cancer care paradigm. Research models for biomedicine have been somewhat limited when applied to broader, more holistic conceptualizations of health common to many forms of CAM. Thus, while numerous challenges to studying CAM exist, a fundamental question is not just what CAM practices should be studied but how CAM should be studied. The authors propose a model that emphasizes methodologic rigor yet approaches CAM research according to relative levels of evidence, meaning, and context, ranging from experimental, quantitative studies of mechanism to qualitative, observational studies of noetic/salutogenic variables. Responsibility for training researchers prepared to meet such challenges rests on both CAM and mainstream academic institutions, and care must be taken to avoid philosophical and practical pitfalls that might befall a myopic perspective of integration.

Participation in community health screenings: a qualitative evaluation.

Community health screenings and education programs have been widely used to identify individual health risks and promote early diagnosis and treatment of disease. Participation in these community activities is dependent on the initial health-seeking behaviors of the individual. Focus group interviews1 were conducted with both attendees and nonattendees of a program offering health education and screenings in various settings in a semirural area. The purpose of these group interviews was to better understand issues associated with participation. A domain analysis of the qualitative data revealed that multiple aspects of self-care orientations as well as interpersonal and environmental factors influenced participation. A paradoxical facilitator-inhibitor effect was apparent. The companionship and support inherent in a community setting was an incentive for participation, but also presented concerns about confidentiality. However, concern about getting knowledge about self-care and the fear and anxiety of learning the results of screening tests creates a push-pull dilemma that is a challenge for health care providers. Factors that influence participation in semirural community health screenings are varied and complex and suggest multidimensional approaches be used in designing programs.