Diverse rural caregivers for individuals with Alzheimer's disease or related dementias: analysis of health factors at the individual, interpersonal, and community level.

Objectives: Approximately 6.2 million Americans aged 65 or older have Alzheimer's disease or related dementias (ADRD). Unpaid family members and friends provide the bulk of caregiving for these individuals. Caregiving in rural areas adds unique challenges, particularly for ethnically/racially diverse caregivers. This study provides a profile of diverse, rural ADRD caregivers with an emphasis on multi-level factors that influence physical and mental health.Methods: A cross-sectional survey was conducted with 156 diverse rural ADRD caregivers.Results: 65% of participants identified as White/Non-Hispanic (WNH; n = 101) and 35% identified as ethnically/racially diverse (ERD; n = 55). The majority of participants reported economic deprivation. More ERD caregivers were uninsured and had at least one chronic health condition. Higher proportions of ERD caregivers smoked cigarettes, consumed alcohol regularly, and had not seen or talked to a doctor in the previous year. There were no ethnic/racial group differences in stress, anxiety, depressive symptoms, subjective health, or sleep quality.Conclusion: Rural caregivers, regardless of ethnicity/race, may benefit from extra supports in order to maintain optimal health. Further research is needed to disentangle the complex relationship between culture, caregiving, and health.

"We Live on an Island": Perspectives on Rural Family Caregivers for Adults with Alzheimer's Disease and Related Dementias in the United States.

As the United States' aging population grows, there will be increased prevalence of individuals living with Alzheimer's Disease and related dementias (ADRD), who largely rely on the support of their family caregivers. Family caregivers residing in rural areas face additional challenges with managing caregiving responsibilities and navigating support services. The purpose of this multilevel phenomenological qualitative study was to explore the assets, unique needs, and resources of rural-residing ADRD caregivers from the caregiver, provider, and policy influencers' perspectives. The study took place between 2019 through 2021 in northern Arizona, a largely rural and geographically vast area home to caregivers from diverse backgrounds. Twenty-seven caregivers to a loved one with ADRD participated in focus groups. Twelve health and social services providers and twelve policy influencers, those involved in leadership positions for aging programs or advocacy groups, completed individual interviews. Caregivers demonstrate many assets which contribute to their ability to manage and cope with their caregiving role. However, caregivers face a series of issues related to their caregiving role and need early and ongoing education regarding ADRD. There is a lack of resources available in rural areas, in particular providers, making it challenging to obtain needed resources necessary to support their loved one with ADRD. Furthermore, there is a need for more providers trained in working with aging adults and those experiencing ADRD, and a need for more culturally relevant resources.

Development and Validation of a Community Assessment Survey for Diverse Rural Family Caregivers of People With Alzheimer Disease and Related Dementias.

Many individuals with Alzheimer disease and related dementias receive care from family members and friends. Rurality adds increased complexity to care, especially for diverse caregivers. This study details the development and content validation process for a community assessment survey for rural white, Latinx, and American Indian/Alaska Native Alzheimer disease and related dementias caregivers. Foundational survey items were based upon instruments validated with diverse rural caregivers. A modified Delphi process (2 rounds) was used to refine items. The process concluded when 75%+ of experts agreed that the survey was (1) inclusive of different cultural groups; (2) respectful of cultural values and norms; (3) comprehensive with respect to needs, assets, and resources, and (4) relevant to the experiences of diverse rural caregivers. Round 1 of the process (N = 9 panelists) resulted in the elimination of 2 survey sections, a greater focus on issues including transportation and roles of extended family members, and the inclusion of open-ended questions. Round 2 (N = 6 panelists) resulted in further improvements, particularly to the sections about cultural customs, beliefs, and traditions and interactions with health care and other providers. Benefits of the process included raising awareness about rural caregiving issues and maximizing data quality. Challenges included honoring the diversity of respondents' opinions and balancing research rigor with community utility. This community assessment survey may help researchers better understand the needs and culturally-based strengths of diverse rural family caregivers.

Development and validation of a quality of relationship intervention for stroke survivor-family caregiver dyads.

Background: The relationship between stroke survivors and family caregivers is critical for the well-being of both dyad members. Currently, there are few interventions targeted at dyads and focused on strengthening the relationship between survivors and family caregivers.Objectives: This study reports on the development of a customizable, strengths-based, relationship-focused intervention driven by the real-world experience and advice of stroke dyads. It also describes the "tips" that survivors and family caregivers offered for dealing with relationship challenges after stroke.Methods: Content of the intervention, including relationship tips, was derived from semi-structured interviews with N= 19 stroke dyads. A modified Delphi process with a national panel of 10 subject matter experts was used to evaluate and refine the content of the intervention and the associated screening tool.Results: Seventeen domains of relationship challenges and tips were identified. Consensus was reached among experts that the intervention content was relevant to the goal of helping survivors and family caregivers maintain a strong relationship after stroke; (2) clear from the perspective of stroke survivors and family caregivers who would be using it; (3) accurate with respect to the advice being offered, and; (4) useful for helping stroke survivors and family caregivers improve the quality of their relationship.Conclusions: This study extends the limited body of research about dyadic interventions after stroke. The next steps in this line of research include feasibility testing the intervention and evaluating its efficacy in a larger trial.

Supporting New Community-Based Participatory Research Partnerships.

Marginalized communities have a documented distrust of research grounded in negative portrayals in the academic literature. Yet, trusted partnerships, the foundation for Community-Based Participatory Research (CBPR), require time to build the capacity for joint decision-making, equitable involvement of academically trained and community investigators, and co-learning. Trust can be difficult to develop within the short time between a funding opportunity announcement and application submission. Resources to support community- and academic-based investigators' time to discuss contexts, concerns, integration of expertise and locally acceptable research designs and data collection are limited. The National Institutes of Health (NIH) funded Center for American Indian Resilience and the Southwest Health Equity Research Collaborative have implemented an internal funding mechanism to support community and academic-based investigators' travel cost and time to discuss complementary areas of interest and skills and to decide if moving forward with a partnership and a collaborative grant proposal would be beneficial to the community. The rationale and administration of this Community-Campus Partnership Support (CCPS) Program are described and four examples of supported efforts are provided. Centers and training programs frequently fund pilot grants to support junior investigators and/or exploratory research. This CCPS mechanism should be considered as precursor to pilot work, to stimulate partnership building without the pressure of an approaching grant application deadline.

Trends in Contemporary Holistic Nursing Research: 2010-2015.

PURPOSE: The purpose of this study was to describe and summarize the characteristics of contemporary holistic nursing research (HNR) published nationally. DESIGN: A descriptive research design was used for this study. METHOD: Data for this study came from a consecutive sample of 579 studies published in six journals determined as most consistent with the scope of holistic nursing from 2010 to 2015. The Johns Hopkins level of evidence was used to identify evidence generated, and two criteria-power analysis for quantitative research and trustworthiness for qualitative research-were used to describe overall quality of HNR. FINDINGS: Of the studies, 275 were considered HNR and included in the analysis. Caring, energy therapies, knowledge and attitudes, and spirituality were the most common foci, and caring/healing, symptom management, quality of life, and depression were the outcomes most often examined. Of the studies, 56% were quantitative, 39% qualitative, and 5% mixed-methods designs. Only 32% of studies were funded. Level III evidence (nonexperimental, qualitative) was the most common level of evidence generated. CONCLUSIONS: Findings from this study suggest ways in which holistic nurse researchers can strengthen study designs and thus improve the quality of scientific evidence available for application into practice and improve health outcomes.

Essential Oils and Gastroparesis: Power for Transforming Health, Hope, and Quality of Life.

This study explored how essential oils for persons with gastroparesis symptoms affect the quality of life. Gastroparesis is a chronic delayed gastric motility disorder characterized by postprandial fullness, early satiety, nausea, vomiting, abdominal discomfort, bloating, depression, and anxiety. The aim of this study was to determine how essential oils support digestion and eliminate inflammation in the body as evidenced by self-reporting a decrease in symptoms, thereby improving quality of life. A qualitative descriptive methodology using Barrette's Theory of Power as Knowing Participation in Change thematic framework was used. Three main themes were extracted from the data: awareness of quality of life possibilities, freedom to make choices, and transforming health and hope. The constitutive theme that was synthesized became essential oils transform health, hope, and increase quality-of-life possibilities.

Patient-provider partnership in a memory disorder center.

PURPOSE: The purpose of this article is to describe the patient-provider relationship that is embraced in a memory disorder center utlizing a nurse practitioner-based model of care delivery. DATA SOURCES: A case study approach was used to promote understanding of how this model could be used in practice. CONCLUSIONS: Establishing a partnership relationship with patients, families and other healthcare providers gave patients a greater voice in their care. Patients disclosed information to the practitioner that would otherwise have not been shared and practitioners' care management was more effective because it was based upon input from the patient and family as well as the practitioner's expertise. The interdisciplinary staff have learned to value one another's expertise and to call upon each other as the need arises. IMPLICATIONS FOR PRACTICE: Fostering patient-provider partnering increases the effectiveness of care as well as patient and family satisfaction with the care received.

Clarifying a vision for health literacy: a holistic school-based community approach.

Health literacy has come to the forefront as an emerging health issue. Processes are needed to incorporate health literacy across community-wide settings. The purpose of this article is to describe the process used to assist community partners in a school health program in clarifying their vision of health literacy from which a more holistic approach to the care of school-aged children and the community was co-created.

The intentionality of compassion energy.

Compassion energy is the converse of compassion fatigue. Nurses will grow and thrive if they understand how to self-generate vigor as compassion energy, preventing compassion fatigue or burnout. The compassion energy experience can elicit implications for nursing practice to add to the caring process.