Elyse Shuk

Sharing a diagnosis of HPV‐related head and neck cancer: The emotions, the confusion, and what patients want to know

Oropharyngeal cancers are increasingly associated with human papillomavirus (HPV). Little is known about the experience of patients receiving this diagnosis.

Melanoma survivors: health behaviors, surveillance, psychosocial factors, and family concerns.

Little research has been conducted on melanoma survivors and important opportunities exist for research in this understudied population. The study objective was to examine experiences of melanoma survivors regarding sun protection, surveillance practices, psychosocial and family concerns using focus groups.

Intention to quit smoking among lesbian, gay, bisexual, and transgender smokers.

INTRODUCTION Smoking is highly prevalent among lesbian, gay men, bisexual, and transgender (LGBT) persons and contributes to health disparities. Guided by the theory of planned behavior (TPB), we identified beliefs related to attitudes, perceived behavioral control, and subjective norms, as well as LGBT-specific variables, to explain variance in intention to quit smoking in the next 6 months in LGBT smokers. METHODS Individual interviews (n = 19) identified beliefs about quitting smoking and LGBT-salient variables and aided in survey development. Surveys were sent to a random sample from an LGBT community centers mailing list and center attendees, with a 25.4% response rate. Bivariate and multivariate analyses were conducted with the final sample of 101 smokers. RESULTS No sociodemographic or LGBT-specific variables beyond the TPB constructs were related to intention to quit smoking. A multivariate TPB model explained 33.9% of the variance in quitting intention. More positive attitudes and specific beliefs that cessation would make smokers feel more like their ideal selves and improve health and longevity were related to greater intention to quit (p values < .05). Subjective norm and perceived behavioral control were marginally significant, with perceived approval of partners and others and beliefs that life goal achievement would make it easier to quit positively related to intention. Depression and stress levels were high. DISCUSSION This is among the first studies to examine theoretically grounded variables related to intention to quit smoking in LGBT smokers. We identified specific behavioral, normative, and control beliefs that can serve as intervention targets to reduce smoking in the LGBT community.

A qualitative study to explore psychological distress and illness burden associated with opioid-induced constipation in cancer patients with advanced disease

Background: Constipation affects many patients receiving long-term opioid therapy for cancer pain. Little is known about the nature of psychological distress and the burden associated with this problem. This information may inform the development of effective treatment strategies and ameliorate distress. Aim: The objective was to use qualitative research methods to better understand psychological distress and the burden associated with opioid-induced constipation and its treatment in advanced cancer patients. Design: In this qualitative study, semi-structured interviews explored perceptions of psychological distress and burden from opioid-induced constipation. Interviews were analyzed using a thematic content analysis approach involving descriptive and interpretive coding and identification of recurring themes. Setting/participants: Twelve advanced cancer patients with opioid-induced constipation were recruited from a large urban hospital. Results: Patients experienced various types of negative affect and cognitions associated with opioid-induced constipation. Analyses indicated three major themes: (1) irrational thoughts and educational needs; (2) psychological distress from constipation and (3) the effects of constipation on the decision to use opioid analgesics. Irrational thoughts and educational needs included beliefs that nutrition could improve constipation, the supposition that constipation indicated deteriorating health, and catastrophic beliefs. Psychological distress included depressive symptoms and anticipatory anxiety related to constipation. Decision-making revealed cognitive dissonance about using opioids and conflicting preferences about continuing use. Conclusions: Future investigation of the multiple components of cognitive and affective burden from opioid-induced constipation is warranted. Understanding the varied nature of this burden may improve clinical recognition and assessment and promote more intensive management consistent with the distress it produces.

Family communication after melanoma diagnosis.

Physicians often recommend that melanoma survivors discuss family-wide physician skin screening and sun protection.1 Family discussions about melanoma are prevalent2 and can potentiate screening and sun protection.3,4 The goals of the current study are to examine processes that enhance or discourage communication about melanoma in affected families.

Family Communication Patterns After Melanoma Diagnosis

To examine health communication in families after cancer diagnosis, we conducted qualitative interviews examining communication processes among recently diagnosed melanoma patients and one of their adult children. Communication regarding melanoma and prevention is common in these families, yet adherence to recommended prevention and screening behaviors is inconsistent. Our study objectives were to examine processes regarding disclosure of the melanoma diagnosis, responses to this information in family members, and processes by which families encourage melanoma prevention and screening behaviors, specifically, sun protection and skin cancer screening. Participants were recruited during their melanoma surgical follow-up appointment, and included nineteen families. Thematic content analysis was conducted via team and individual coding. The findings reveal that intimacy and emotional closeness, gender, communication style, convenience/proximity, the presence of closed relationships, and perceived negative effects of the news impacted disclosure of the family melanoma diagnosis. Anxiety and increased informational needs were the primary responses in family members hearing about the diagnosis. Encouragement to adopt protective behaviors was achieved through risk awareness, ad-hoc reminders, scare tactics, and actually performing the health behavior. The communication challenges and opportunities presented by our findings may further inform physician counseling and health education strategies for cancer families.

Men's experience with penile rehabilitation following radical prostatectomy: a qualitative study with the goal of informing a therapeutic intervention

Erectile rehabilitation (ER) following radical prostatectomy (RP) is considered an essential component to help men regain erectile functioning; however, many men have difficulty adhering to this type of program. This qualitative study explored mens experience with ER, erectile dysfunction (ED), and ED treatments to inform a psychological intervention designed to help men adhere to ER post‐RP.

Tanning and beauty: Mother and teenage daughters in discussion

Tanning increases dramatically through the teenage years, but the family context of this health risk behavior is relatively unstudied. We conducted videotaped conversations between teenage girls (10th and 11th grade) and their mothers. We developed a coding system for discussion content and highlight findings including inadequate knowledge concerning the harms of tanning and positive views of outdoor tanning over indoor tanning, yet agreement that all tans are attractive. Many teens believed that indoor tanning is sometimes necessary to achieve the tanned look. These findings can usefully guide intervention development regarding the harms of all tanning, rather than indoor or outdoor tanning specifically.

At the Intersection of HIV/AIDS and Cancer: A Qualitative Needs Assessment of Community-Based HIV/AIDS Service Organizations

Due to advances in treatment, persons living with human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS) are living longer, but with aging, immune deficits, and lifestyle factors, they are at increased risk for cancer. This challenges community-based AIDS service organizations (ASOs) to address the growing cancer needs of persons living with HIV/AIDS (PLWHA). Community-based participatory research was applied to engage ASOs in exploring their capacities and needs for integrating cancer-focused programming into their services. Focus groups were conducted with a community advisory board (CAB) representing 10 community-based organizations serving PLWHA. Three 90-minute, serial focus groups were conducted with a mean number of seven participants. Topics explored CAB members’ organizational capacities and needs in cancer prevention, detection, treatment, and survivorship. Transcript analyses identified six themes: (a) agencies have limited experience with cancer-focused programs, which were not framed as cancer specific; (b) agencies need resources and collaborative partnerships to effectively incorporate cancer services; (c) staff and clients must be educated about the relevance of cancer to HIV/AIDS; (d) agencies want to know about linkages between HIV/AIDS and cancer; (e) cancer care providers should be culturally competent; and (f) agencies see opportunities to improve their services through research participation but are wary. Agency capacities were strong in relationships with clients and cultural competency, a holistic view of PLWHA health, expertise in prevention activities, and eagerness to be on the cutting edge of knowledge. Cancer education and prevention were of greatest interest and considered most feasible, suggesting that future projects develop accordingly. These findings suggest a high level of receptivity to expanding or initiating cancer-focused activities but with a clear need for education and awareness building. Qualitative findings will inform a large quantitative survey to validate identified themes, which will be applied in developing interventions to assist ASOs in adopting or expanding cancer-focused activities.

Development of an advance care planning paradigm for advanced cancer: person-centered oncologic care and choices (P-COCC)

It is plausible that inquiring about individual values is appropriate and ultimately helpful to patients receiving treatments for advanced cancers. But, the values of these cancer patients upstream of end-of-life are not widely known [1]. Furthermore, no specific person-centered advance care planning (ACP) paradigm yet exists for standard use by the medical oncology community. With the development of a whole-patient-centered ACP initiative PersonCentered Oncologic Care and Choices (P-COCC), we therefore seek to address patient perspectives in addition to specific choices about disease-modifying and medically intensive treatments such as cardiopulmonary resuscitation. In this study, we report on the development and initial testing of the values questions that comprise the P-COCC paradigm, having hypothesized pre-study that these questions would be appropriate to patients with advanced cancer.