Understanding Caregivers of Native Hawaiian Kūpuna with Age-Related Memory Loss on One Hawaiian Homestead

Purpose/Background: Understanding the concerns and challenges of caregivers of Native Hawaiian kūpuna or elders (age 55 years and older) with age-related memory loss conditions, specifically, Alzheimer’s Disease and Related Dementia (ADRD), on one Hawaiian Homestead is the focus of this translational research study. The goal of this research is to identify factors affecting the safe and compassionate care for kūpuna preferring to age-in-place. In Native Hawaiian communities, it is culturally appropriate to care and support kūpuna who wish to age-in-place. This study was conducted in Papakōlea, a Native Hawaiian Homestead community consisting of three subdivisions in the city of Honolulu, located on the island of O\u27ahu using a cultural safety praxis. The literature on caregiving in the context of ADRD indicates that caregivers often are concerned about the safety of their elders in the home and wonder if they are “doing enough” to care for their loved one. As a result of their historical struggles, residents of Papakolea place an emphasis on supporting and caring for kūpuna who wish to age-in-place. However, families voiced concerns of not being equipped to provide their kūpuna quality care. Materials & Methods: This research is grounded in Community-Based Participatory Research (CBPR) principles and utilizes a mixed methods strategy to assess the needs and concerns of caregivers of Papakōlea. The study focuses on identifying the needs, knowledge, attitudes, and resources that enable or disable caregiving with a view toward informing care within the designated homestead community. The quantitative arm of the study involved development and administration of a written survey eliciting sociodemographic characteristics, as well as, knowledge-attitudes-behaviors on caregiving. The qualitative arm of the study involved focus groups to clarify and extend information learned through survey data. Participants of the study were self-identified current and former caregivers, age 18 and older, experienced in caring for kūpuna with conditions associated with age-related memory loss (e.g., ADRD). Results: Approximately 92% of participants identified as Native Hawaiian (n=155). Ages ranged from 18 to 82 years (M = 51.22, SD 16.347). The results indicate that current and former caregivers provide care primarily to their mothers 41% (n=48), fathers 11% (n=13) and grandparents 21% (n=25). The number of kūpuna diagnosed with ADRD was 48% (n=42), about 52% (n=49) believed they cared for someone with ADRD even though they have not received a diagnosis from a physician. Caregivers identified the need for family conversations on advance health care directives before a medical emergency and respite support as primary concerns. Discussion/Conclusion: This study focused on Native Hawaiians, a marginalized population and the need to provide relevant ADRD services. Findings are used to assist this homestead community in determining the types of resources and support essential to mitigate caregiver burnout while simultaneously providing services to enhance kūpuna care while using HILINA\u27I concepts to continue to build trust and cultural safety using a research praxis (figure 1). There are differences between homestead communities across the state in the expression of Hawaiian values and practices and degrees of community resilience. Therefore, this study may not be representative of all homesteads statewide

Understanding Caregivers of Native Hawaiian Kūpuna with Age-Related Memory Loss on One Hawaiian Homestead.

Ph.D. Thesis. University of Hawaiʻi at Mānoa 2018

Decolonizing Knowledge Development In Health Research Cultural Safety Through The Lens Of Hawaiian Homestead Residents

Cultural safety is a strengths-based construct which aims to subvert unequal power relations, honor diverse ways of knowing in community-specific contexts, and acknowledge community as arbiter of ‘how’ safety is actualized. Published literature documents the benefits of culturally safe healthcare yet pays scant attention to culturally safe research praxis. Our team of practitioner-researchers sought to uncover meanings of cultural safety in community-based health research with Hawaiian Homestead residents. Focus groups were conducted in three communities. Emic descriptions of cultural safety and non-resident researchers were elicited. Content analysis revealed trust (hilina‘i) as the overarching theme fundamental to cultural safety. Cultural safety was demonstrated by practices that accommodate and engage community in their shared sense of place, history, ways of knowing, and capacity-building. Such practices likely mitigate perceptions of cultural imposition and promote relevant interventions developed with communities. Implications are enunciated in HILINA‘I, a mnemonic for advancing knowledge decolonization and health equity

Assessing Community Needs and Feedback: Using Photovoice to Gather Community Perspective

Photovoice (PV) is a qualitative methodology grounded in community-based participatory research and Participatory Action Research. Photovoice asks participants to share photographs of their lived experiences to communicate their lives and the meaning of their concerns. Since its inception in the early 1990s, PV has been used in various settings worldwide to draw attention to the needs of participating communities. Though recognized as a robust research methodology because it can be easily adapted for different uses, PV offers a unique alternative for gathering feedback in a community from stakeholders. This paper provides an overview of PV, describes how the method is conducted and suggests how it can elicit information from community members to answer different questions

Expressed sequence tags from Peromyscus testis and placenta tissue: Analysis, annotation, and utility for mapping

<p>Abstract</p> <p>Background</p> <p>Mice of the genus <it>Peromyscus </it>are found in nearly every habitat from Alaska to Central America and from the Atlantic to the Pacific. They provide an evolutionary outgroup to the <it>Mus/Rattus </it>lineage and serve as an intermediary between that lineage and humans. Although <it>Peromyscus </it>has been studied extensively under both field and laboratory conditions, research has been limited by the lack of molecular resources. Genes associated with reproduction typically evolve rapidly and thus are excellent sources of evolutionary information. In this study we describe the generation of two cDNA libraries, one from placenta and one from testis, characterize the resulting ESTs, and describe their utility for mapping the <it>Peromyscus </it>genome.</p> <p>Results</p> <p>The 5' ends of 1,510 placenta and 4,798 testis clones were sequenced. Low quality sequences were removed and after clustering and contig assembly, 904 unique placenta and 2,002 unique testis sequences remained. Average lengths of placenta and testis ESTs were 711 bp and 826 bp, respectively. Approximately 82% of all ESTs were identified using the BLASTX algorithm to <it>Mus </it>and <it>Rattus</it>, and 34 – 54% of all ESTs could be assigned to a biological process gene ontology category in either <it>Mus </it>or <it>Rattus</it>. Because the <it>Peromyscus </it>genome organization resembles the <it>Rattus </it>genome more closely than <it>Mus </it>we examined the distribution of the <it>Peromyscus </it>ESTs across the rat genome finding markers on all rat chromosomes except the Y. Approximately 40% of all ESTs were specific to only one location in the <it>Mus </it>genome and spanned introns of an appropriate size for sequencing and SNP detection. Of the primers that were tried 54% provided useful assays for genotyping on interspecific backcross and whole-genome radiation hybrid cell panels.</p> <p>Conclusion</p> <p>The 2,906 <it>Peromyscus </it>placenta and testis ESTs described here significantly expands the molecular resources available for the genus. These ESTs allow for specific PCR amplification and broad coverage across the genome, creating an excellent genetic marker resource for the generation of a medium-density genomic map. Thus, this resource will significantly aid research of a genus that is uniquely well-suited to both laboratory and field research.</p

Sustaining University-Community Partnerships in Indigenous Communities: Five Lessons from Papakolea

This resource paper draws lessons from a twenty-year partnership between the Native Hawaiian community of Papakōlea, the Hawai‘i Alliance for Community-Based Economic Development, and the Department of Urban and Regional Planning at the University of Hawai‘i. Key players and co-authors describe five principles for sustained partnerships: (1) building partnerships based upon community values with potential for long-term commitments; (2) privileging indigenous ways of knowing; (3) creating a culture of learning together as a co-learning community; (4) fostering reciprocity and compassion in nurturing relationships; and (5) utilizing empowering methodologies and capacity-building strategies

Community-Based Participatory Research Integrates Behavioral and Biological Research to Achieve Health Equity for Native Hawaiians

Native Hawaiians bear a disproportionate burden of type-2 diabetes and related complications compared to all other groups in Hawai‘i (e.g., Whites, Japanese, Korean). Distrust in these communities is a significant barrier to participation in epigenetic research studies seeking to better understand disease processes. The purpose of this paper is to describe the community-based participatory research (CBPR) approach and research process we employed to integrate behavior and biological sciences with community health priorities. A CBPR approach was used to test a 3-month evidence-based, diabetes self-management intervention (N = 65). To investigate the molecular mechanisms linking inflammation with glucose homeostasis, a subset of participants (n = 16) provided peripheral blood mononuclear cells. Community and academic researchers collaborated on research design, assessment protocols, and participant recruitment, prioritizing participants’ convenience and education and strictly limiting the use of the data collected. Preliminary results indicate significant changes in DNA methylation at gene regions associated with inflammation and diabetes signaling pathways and significant improvements in hemoglobin A1c, self-care activities, and diabetes distress and understanding. This study integrates community, behavioral, and epigenomic expertise to better understand the outcomes of a diabetes self-management intervention. Key lessons learned suggest the studies requiring biospecimen collection in indigenous populations require community trust of the researchers, mutual benefits for the community and researchers, and for the researchers to prioritize the community’s needs. CBPR may be an important tool in providing communities the voice and protections to participate in studies requiring biospecimens

Social Support Groups in the Maintenance of Glycemic Control after Community-Based Intervention

Native Hawaiians and other Pacific Islanders (NH/PI; e.g., Samoan and Chuukese) have higher type 2 diabetes prevalence compared to other groups in Hawai‘i. Partners in Care (PIC), a culturally tailored, community-based, diabetes self-management education intervention (DSME), is effective at improving participants’ glycemic control and self-care behaviors. Maintenance of improvements is challenging. Diabetes-related social support groups (SSG) are a promising maintenance component for DSME. This study examined the effects of a diabetes-specific SSG component relative to a control group, after the receipt of the 3-month PIC intervention, which was delivered to 47 adult NH/PI with type 2 diabetes. Participants were then randomized to either a 3-month, 6-session SSG or a control group. Hemoglobin A1c (HbA1c), blood pressure, triglycerides, cholesterol, and diabetes self-management knowledge and behaviors were assessed at baseline, 3 months, and 6 months. Results indicated significant improvements in HbA1c, diabetes-related self-management knowledge, and behaviors from baseline to 3-month assessment. However, no differences between the SSG and control group from 3-month to 6-month assessment suggest that all participants were able to maintain initial improvements. The SSG group had a significant decrease in systolic blood pressure from 3-month to 6-month assessment while the control group did not. Study limitations and future directions are discussed