Communication about Congenital Adrenal Hyperplasia: Perspective of Filipino Families.

Congenital adrenal hyperplasia (CAH), like other genetic conditions, is a relational disease from both the biological and psychosocial perspectives since the diagnosis gives rise to a variety of health, reproductive, and psychosocial implications. It is in these contexts that family communication of genetic information is important to study. Hence, this research aimed to explore genetic information communication in Filipino families affected with CAH. Using a qualitative descriptive design, families with a child affected with CAH were recruited through the CAH parent support group and were interviewed. Semi-structured interviews explored flow and content of genetic information communicated, the meanings the families attach to the communicated information, and the motivating and hindering factors in communication. Thematic analysis was used to analyze the findings. A total of five families participated, which included 11 individuals. Findings revealed that the diagnosis of CAH is not kept secret and it is openly shared with the family. The decision to communicate is influenced by several factors including the family's desire to seek further information about their family history. Initially, the focus of the communicated information is on the health implications and while communication about genetics occurs, this is almost always confined to the immediate family. The mother and grandmother serve as primary communicators in the family. The families have limited understanding of CAH especially its genetic implications including recurrence risk and carrier status. The findings can guide genetic counselors in supporting families in communicating information about CAH with the rest of the family.

Community-based recruitment for clinical trials poses the need for social and ethical considerations.

OBJECTIVE: This article's objective was to describe the processes, strategies, and challenges of community-based recruitment to complement hospital-based recruitment for a global clinical outcomes trial on chronic obstructive pulmonary disease (COPD). STUDY DESIGN AND SETTING: To increase the subject recruitment for the clinical research, field staff were trained on community-based recruitment strategies and activities. Courtesy calls and coordination with community organizations were done before recruitment activities. House-to-house interviews using patient referral checklist, lay fora on COPD, and spirometry camps identified eligible participants in five sites in the Philippines. RESULTS: Of 3,202 individuals interviewed, 27% potentially eligible were referred to hospital sites. Of 55% who were successfully screened, 9% were randomized. Courtesy calls and endorsements identified potential recruits. Issues related to communication, work, health condition, and family members' encouragement affected participation. Complexity of the eligibility criteria contributed to the high screen failure rates. Enabling full subject protection entitlements before informed consent taking was one of the ethical issues identified. CONCLUSIONS: Community-based recruitment may increase the number of subjects for clinical trials depending on the complexity of the requirements. Adopting a community-based recruitment strategy must be decided at the planning stage for efficient coordination of activities. Social preparation should consider socioeconomic and cultural factors. Current ethical guidelines and regulations indirectly address issues on community-based recruitment.