Nursing engagement in genetics and genomics: A developing country's perspective.

AIM: To review how nursing is engaged with genetics/genomics developments in the Philippines' healthcare system. BACKGROUND: There is an increasing demand for genetics services. However, the number of genetics professionals is lagging with this demand. Nurses play pivotal roles in mainstreaming genetics/genomics across healthcare settings. SOURCES OF EVIDENCE: Published and gray literature on genetics/genomics services in the Philippines and roles of nurses and the experiences of the authors. DISCUSSION: Nurses involved in genetics in the Philippines work in specialty genetics clinics and in newborn screening (NBS). Several issues hinder maximizing roles of nurses in genetics, such as the absence of competency standards, inadequate educational preparation, absence of a specialty organization, and increased workload of nurses. CONCLUSION: The engagement of nursing with genetics/genomics is limited. Increasing awareness on the impact of nursing in genetics/genomics, adopting competency standards, and curricular integration are key if nurses' roles in genetic healthcare are to be realized. IMPLICATIONS FOR NURSING PRACTICE: Introducing genetics/genomics systematically in practice environments is crucial. Tools such as the Method for Introducing New Competency Genomics can be used as a guide. Existing population-based genetics programs such as NBS and rare disease offer a good context to introduce genetics in existing courses in the curriculum. IMPLICATIONS FOR NURSING POLICY: Nursing leaders need to be aware and recognize the relationship between nursing and genetics/genomics. A local specialty group in genetics and collaboration with international organizations are crucial to advocate the inclusion of genetics/genomics in nursing. Existing genetics/genomics competency standards can be validated in the local context to inform curricular integration.

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.

Care Needs of Parents of Children With Cancer in a Low-Middle-Income Country.

Background: Mapping out actual supportive care needs assists nurses in providing holistic individualized care. This study aimed to explore the care needs of parents of children with cancer in the Philippines. Method: Guided by the Supportive Care Needs Framework (SCNF), this study used an embedded mixed-method design with the quantitative revised Cancer Patient Needs Questionnaire and qualitative semistructured interviews to describe parents' care needs and priorities. Results: Filipino parents (N = 156) of children with cancer have various care needs which could be classified along the SCNF categories-practical, informational, spiritual, physical, emotional, and physical needs as ranked from highest to lowest. A number of variables were significantly associated with care needs. Solid tumor diagnosis was associated with greater practical, emotional, and psychosocial care needs; having a child who had undergone surgery was associated with more practical and spiritual care needs; and being within one year of the child's diagnosis was associated with practical, psychosocial, and spiritual care needs. Parent priority needs included (a) addressing financial needs; (b) access to temporary housing to minimize treatment-related costs; (c) support groups among parents of children with cancer as a source of information; (d) financial and social support between members of family and partners of parents of children with cancer; and (e) using prayer to facilitate acceptance. Conclusions: Supportive care needs of parents of children with cancer are important components of care that should be given recognition to enhance holistic individualized care throughout the childhood cancer experience.

Cultural beliefs on disease causation in the Philippines: challenge and implications in genetic counseling.

The provision of culturally competent health care is an important professional issue recognized by the pioneer genetic counselors in the Philippines. Being an archipelago consisting of 7,107 islands, the Philippines has approximately 175 ethnolinguistic groups with their own unique cultural identity and health practices. The emphasis on culture in our genetic counseling training recognizes its crucial role in molding an individual's conceptualization of health, as well as other life aspects, especially since the Filipino culture is a mixture of indigenous as well as imported and borrowed elements. As part of this endeavor, we will describe in this paper seven common Filipino cultural beliefs: namamana, lihi, sumpa, gaba, pasma, namaligno, and kaloob ng Diyos. We will also share examples on how these common beliefs provide explanation as cause of illness and its implications in our genetic counseling profession.