Family Information Management in the Context of Inherited Conditions: An Integrative Review.

This review aimed to develop a framework to understand the process of information management in families with inherited conditions. Electronic databases were searched for relevant peer-reviewed articles. Articles were included if they were original research on families affected by any confirmed inherited condition, described how a family accesses, interprets, conveys, and/or uses information about the disease, included the recruitment of more than one family member, and used family as the unit of analysis. Data were analyzed through directed content analysis. Thirty-four articles from 27 studies were analyzed. We propose a framework for family information management consisting of the following domains: contextual influences, family information management behaviors, and family information management outcomes. This proposed framework expands the understanding of how families manage their genetic information in making health care decisions for their affected and at-risk relatives.

Towards Health Promoting Schools: Pilot Training and Evaluation of the Updated Urbani School Health Kit (USHK) among School Teachers in Manila.

Background and Objective: Committed to enhancing healthy living, learning, and working conditions, a health-promoting school is a potent influencer of behaviors and habits, reaching families and communities effectively. In the Western Pacific region, the Urbani School Health Kit (USHK) is one of the tools developed to integrate health promotion in schools; however, it needs to be updated to adapt to the evolving health challenges of lifestyle-related diseases. Hence, this study aimed to conduct a pilot training and evaluation of the updated USHK among school teachers in Manila. Methods: The USHK was updated with new materials on (1) health-enhancing physical activity; (2) healthy nutrition; and (3) family and community engagement. A two-day training-workshop with 30 school teachers was then conducted to facilitate the integration of the updated USHK in their class activities. We used a multi method evaluation design to assess the implementation of the USHK. Particularly, quantitative data were obtained from the participants' feedback on the toolkit and their knowledge of health-related practices. One month later, field visits were conducted to assess the participants' abilities in utilizing the toolkit into their classes or school activities. Qualitative interviews and classroom observations were also collected post-implementation to determine potential facilitators and barriers to program delivery, and suggestions for improvement. Descriptive statistics were used to summarize participant feedback, while Wilcoxon signed rank test was utilized to determine changes in participant knowledge pre- and post-training. Qualitative data were synthesized through content analysis. Results: Participants provided high satisfaction ratings for the training they received, as well as high scores for the updated USHK, in terms of its appropriateness and acceptability. Significant improvements in participants' overall health promotion knowledge were also noted (Z = -4.456, p <0.001), particularly involving the domains of nutrition (Z = -2.972, p = 0.003), physical activity (Z = -3.564, p <0.001), and family/community engagement (Z = -2.531, p = 0.011). Meanwhile, participants also suggested further improvements in the toolkit to enhance its utilization in the local context. Administrative support was a crucial facilitator for implementing the USHK, while resource limitations were identified as significant barriers. Conclusion: The updated USHK, which provides a more comprehensive health promotion approach for schools, is potentially feasible for implementation in educational institutions in Manila. The toolkit can be utilized by teachers and school nurses to integrate health promotion activities into the school environment and classroom activities. To facilitate its wider uptake and implementation in other schools, government support and resource availability are crucial.

Leadership Development Program for Public Health Nurses: An Evaluation of Workplace Application.

Background and Objective: Public health nurses (PHNs) are vital in the local implementation of the provisions of the Universal Healthcare (UHC) Act of 2019. However, they need adequate competencies in health systems approach to successfully implement the provisions of the law. In response to this, a leadership development course for public health nurses (LDC-PHN), anchored on the building blocks of health systems, was developed and implemented. This paper aims to describe the extent to which training participants have applied the competencies acquired from the LDC-PHN as manifested by the workplace application of their capstone projects. Methods: Following Kirkpatrick's Model of Evaluation, we used a multi-method study design to evaluate the extent of the participants' workplace application of acquired competencies. Sources of data included the Workplace Application Plan (WAP) accomplished by each participant, a questionnaire to determine the perceived implementation status of the participants' capstone project, interviews, and focus group discussions (FGDs) conducted with selected participants and their supervisors, and observation visits. Data were collected from May to December 2022. Data from the semistructured interviews and FGDs were analyzed through content analysis, while the participants' perceived status of their capstone project implementation was summarized as frequencies. Results: Majority of the participants (61.9%) reported partial implementation of their capstone project while 16.77% reported full implementation. Capstone project implementation was facilitated by the support received from their supervisors and local chief executives. Barriers identified included the demands of the COVID-19 pandemic and the challenges imposed by the events before and after the 2022 Philippine National elections. Major themes emerged from the interviews conducted among participants and their supervisors. The workplace application of the training program outcomes, based on participants' perspectives, yielded increased capacity to lead and innovate, improved ability to advocate for capstone project implementation, transferability of acquired skill sets, and improved population outcomes. From supervisors' perspectives, workplace application of training program outcomes include increased ability of PHNs to deliver health services, and visible enhancement of leadership and supervision skills among PHNs. Conclusion: Given ample support and opportunities, and despite the barriers and challenges they faced, LDC-PHN participants, in general, utilized and applied the competencies they gained from the course in their actual work setting. Course graduates participated in health systems strengthening at various capacities by acting upon their capstone projects that addressed UHC challenges within their particular work settings.

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.

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.

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.