Communication Of Familial Risk Research Articles

Men's experiences of recontact about a potential increased risk of prostate cancer due to Lynch Syndrome: "Just another straw on the stack".

The practice of recontacting patients to provide new health information is becoming increasingly common in clinical genetics, despite the limited research to evidence the patient experience. We explored how men with Lynch Syndrome (LS) understand and experience being recontacted about a potential increased risk of prostate cancer. Sixteen men with LS (Meanage 51years) were recruited from an Australian screening study to undergo a semi-structured interview. A modified grounded theory approach was used to guide data collection and thematic analysis. Qualitative coding was shared by the research team to triangulate analysis. The practice of recontact was viewed by participants as acceptable and was associated with minimal emotional distress. The majority of men understood that they may be above population risk of prostate cancer, although evidence was still emerging. Men reported high engagement with personal and familial health, including regular screening practices and familial risk communication. Findings suggest that men's carrier status and beliefs about the actionability of the new cancer risk information influence their response to recontact. Recontact practices that include the offer of risk management strategies may lead to improved patient outcomes (e.g., reduced cancer worry and increased health engagement), if perceived as valuable by recipients.

Latino men and familial risk communication about prostate cancer.

To investigate how familial communication about prostate cancer (PCa) risk and screening affects sons of men with PCa. Qualitative grounded theory. Southern California. 17 Latino sons of PCa survivors. The team conducted semistructured interviews and follow-up interviews. Therefore, the sample includes 25 transcripts. Data were analyzed with a mix of a priori topical codes and grounded theory techniques. Sons were in need of information about familial risk and screening options. They became sensitized to PCa, desired information, and held protective intentions. Hopeful intentions came up against cultural taboos around sex, reproductive health, and intimacy that limited discussions between fathers and sons. Fathers were a valued source of information but play various roles, which affect sons' screening intentions. Open communication between father and son promoted awareness of screening and familial risk. Uncertainty about familial risk and screening options, especially early detection strategies, was exacerbated by cultural taboos around PCa. Fathers could have been primary and credible advocates for shared decision making, but sons had difficulty learning from their fathers' experience. FINDINGS from the study can help inform community-based interventions with Latino families, help to culturally tailor health messaging, and sensitize clinicians to a group that needs concerted counseling about PCa risk and screening.

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. We identified patients (≥ 18 years) treated at Memorial Sloan-Kettering Cancer Center (USA) during 1996-2005 with invasive primary cutaneous melanoma, stages I-III. We stratified focus groups by age (<50 vs ≥ 50 years) and years since diagnosis (1 to <5 years vs 5-10 years). We performed qualitative thematic text analysis, which involved independent data review by multiple analysts (n = 2) followed by interpretation of key findings via consensus work. Forty-eight survivors composed the final sample. Most did not conduct routine skin self-examinations. Survivors became more conscious of sun exposure and expanded their sun protection; some experienced anxiety if caught unprotected in the sun. Survivors were aware of the increased melanoma risk for family members, yet many did not discuss risk reduction. Melanoma diagnosis elevated the importance of retaining health insurance and purchasing life insurance for younger survivors. We did not identify significance difference between those diagnosed more or less recently. We identified areas of high priority to melanoma survivors: skin self-examination, anxiety associated with sun exposure, familial risk communication, and maintaining health insurance benefits. The implications for cancer survivors are that these behavioral data will help to design health promotion and prevention programs that are tailored to melanoma survivors' risk status.