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1.
Aging Ment Health ; 28(6): 943-956, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38127408

ABSTRACT

OBJECTIVES: Racially and ethnically diverse populations have recently contributed to the majority of rural and small-town growth. Consequently, the disproportionately high risk and prevalence of Alzheimer's disease and related dementias (ADRD) among rural and minoritized older residents will likely increase. To address this threat, we tested the hypotheses that (1) a faith-based, resident-led approach would increase basic ADRD knowledge and diagnosis, and (2) older age, female gender, lower educational levels, and more years lived rural would predict number of referrals, new dementia diagnoses, and treatment. METHODS: An adaptation of Schoenberg's Faith Moves Mountains model, previously successful in detection and management of other chronic illnesses in rural settings, guided this community-based participatory research. Local faith community members were trained as research assistants to recruit, administer surveys, conduct brief memory assessments, teach brain health strategies, and follow-up with residents. Outreaches were offered virtually during the pandemic, then in-person monthly at rotating church sites, and repeated ∼1 year later. RESULTS: This rural sample was racially and ethnically diverse (74.5% non-White), with 28% reporting eight or less years of formal education. Findings included that referrals and years lived rural were significant and positive predictors of new ADRD treatments [(b = 3.74, χ2(1, n = 235) = 13.01, p < 0.001); (b = 0.02, χ2(1, n = 235 = 3.93, p = 0.048)], respectively, regardless of participant characteristics. CONCLUSION: Resident-led action research in rural, diverse, faith communities is a successful approach to increasing ADRD disease knowledge, detection, diagnosis, and treatment.


Subject(s)
Alzheimer Disease , Community-Based Participatory Research , Health Knowledge, Attitudes, Practice , Rural Population , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Alzheimer Disease/diagnosis , Alzheimer Disease/ethnology , Ethnicity/statistics & numerical data , Health Knowledge, Attitudes, Practice/ethnology , Rural Population/statistics & numerical data , Racial Groups/statistics & numerical data
2.
J Nurs Care Qual ; 39(2): 114-120, 2024.
Article in English | MEDLINE | ID: mdl-37729002

ABSTRACT

BACKGROUND: Despite the increased awareness of social determinants of health (SDoH), integrating social needs screening into health care practice has not consistently occurred. LOCAL PROBLEM: No social needs screening using recommended standardized questions was available at an outpatient hemodialysis clinic. METHODS: Plan-Do-Study-Act cycles, based on the Model for Improvement, were used to implement the Core 5 SDoH screening tool, a staff referral process, and an evaluation of the implementation process. INTERVENTION: A standardized social needs screening tool and a staff referral process were implemented. An evaluation of the implementation process also occurred. RESULTS: Of 73 patients screened, 21 reported 32 unmet social needs; all received referrals to community resources. Nurses demonstrated high acceptance and usability of the tool and the referral process. CONCLUSIONS: Implementing a standardized screening and referral process customized to clinical workflow enhanced the identification of social needs in patients undergoing hemodialysis.


Subject(s)
Ambulatory Care Facilities , Mass Screening , Humans , Surveys and Questionnaires , Referral and Consultation , Social Determinants of Health
3.
Int J Geriatr Psychiatry ; 38(1): e5865, 2023 01.
Article in English | MEDLINE | ID: mdl-36578203

ABSTRACT

OBJECTIVES: The purpose of this study was to investigate insomnia symptoms and excessive sleep/sluggishness across stages of cognitive decline (cognitively normal [CN], Cognitively Impairment, Not Demented [CIND], dementia) in a large, racially/ethnically diverse sample of older adults (70+) in the US. We also examined whether sleep disturbances at baseline predicted conversion to CIND or dementia at follow-up. METHODS: In this secondary analysis of the Aging, Demographics, and Memory Study (ADAMS) supplement of the Health Retirement Study, we analyzed patterns of informant-reported insomnia and excessive sleep symptoms among three groups of older adults (n = 846): CN, CIND, and dementia. RESULTS: CIND adults were significantly more likely to have informant-reported insomnia symptoms than those in the CN group (p = 0.013). This was driven by a significant race/ethnicity-by-insomnia interaction with diagnostic status (p = 0.029), such that CIND Black and Hispanic older adults had increased insomnia symptom rates compared to CN, whereas White adults had similar insomnia symptoms across diagnostic status. Across all racial/ethnic groups, the prevalence of excessive sleep symptoms increased stepwise from CN to CIND to dementia (p < 0.001). Overall, insomnia symptoms at baseline predicted conversion from CN to CIND (p < 0.001, OR = 0.288; 95% CI: 0.143-0.580) at 4-year (approximate) follow-up; there was no relationship between baseline insomnia or excessive sleep/sluggishness symptoms and conversion from CIND to dementia. DISCUSSION/CONCLUSION: This study provides evidence for the increased risk of insomnia symptoms among Hispanic and Black older adults with CIND, and indicates that insomnia symptoms may be associated with increased risk for development of cognitive impairment.


Subject(s)
Cognitive Dysfunction , Dementia , Sleep Initiation and Maintenance Disorders , Sleep Wake Disorders , Humans , Aged , Dementia/psychology , Sleep
4.
Fam Community Health ; 46(3): 176-180, 2023.
Article in English | MEDLINE | ID: mdl-37083723

ABSTRACT

For many African American adults, the church has the potential to be a place to receive education about advance care planning (ACP). The current study was conducted to (1) identify the frequency of ACP conversations and caregiving and (2) evaluate interest in church-placed end-of-life (EOL) care education. Data were collected from parishioners in 2 African American churches in an urban city in the mid-Atlantic region of the United States. Individuals older than 50 years reported a higher frequency of caregiving ( P < .001) and were more likely to have talked to someone about EOL care ( P < .001) than individuals younger than 50 years. Nearly all respondents considered EOL conversations "important" or "very important" (99.1%) and wanted more information about EOL conversations available via the church (95.8%). Our findings suggest EOL conversations are happening within families and with health care providers, but they are not documented in ways (eg, in writing) that research has focused on previously. Future EOL education will focus more on the importance of documenting and sharing EOL care wishes with family and health care professionals.


Subject(s)
Advance Care Planning , Terminal Care , Adult , Humans , Black or African American , Communication , Religion
5.
Gerontol Geriatr Educ ; : 1-15, 2023 Aug 07.
Article in English | MEDLINE | ID: mdl-37548219

ABSTRACT

Faculty development programs (FDPs) are an effective, evidence-based method of promoting knowledge, skills and self-efficacy of faculty. However, implementation and sustainability of curricular capstone projects developed by faculty as part of these programs are rarely reported. Challenges to sustaining programmatic implementation of interprofessional FDP curricular content into academic and clinical settings over time were not found in peer-reviewed literature. To better understand the sustained impact of our geriatrics-focused FDP, we explored barriers and facilitators to implementation and sustainability of capstone projects designed by faculty Scholars in our FDP. Thematic analysis of virtual interviews with 17 Scholars revealed several key factors that impacted the implementation and Dynamic sustainability of curricular projects. Three major themes and sub-themes were identified: Project Implementation (Supportive Factors, Hindering Factors and Filling in Gaps in the Field); Pedagogical Development (Enhancement of Skills and Culture Change); and Sustainability Impact (Project Sustainability, Career Development and Passing the Torch). Results suggest it is important to ensure logistical support, dedicated time, and organizational or institutional support. Implementation of geriatrics-focused FDPs provides an evidence-based approach to sustainability. Further study of the ongoing barriers and facilitators to sustainability is encouraged.

6.
J Gerontol Nurs ; 48(6): 13-18, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35648582

ABSTRACT

The purpose of the current study was to identify stressors of Black family caregivers (FCGs) of persons with memory problems (PWMPs), services of interest, and barriers to use of these services. Black FCGs were recruited from the Alzheimer's family program at the University of Alabama at Birmingham and affiliated geriatric clinics, media sources, and word-of-mouth referrals. Of 38 Black FCGs interviewed, 26 (68%) were female, 18 (47%) were employed, and 21 (55%) were adult children. Average age of FCGs was 52.11 years. Mean scores for the AD8 Dementia Screening Scale (mean = 13.95, SD = 2.17) and Clinical Dementia Scale Sum of Boxes (mean = 7.29, SD = 0.87) were higher than clinical cutoffs. The most common stressors for Black FCGs were PWMPs' inability to remember who they were, managing care recipients' financial affairs, and managing PWMPs' comorbid conditions. FCGs were most interested in educational material regarding treatment and diagnosis (55.3%), caring for people with dementia (52.6%), understanding dementia (52.6%), and financial/legal services (52.6%). FCGs stated that transportation difficulties and the need for a relief person were barriers to use of services. Results suggest that Black FCGs may be more likely to participate in interventions that include virtual conferencing modalities. [Journal of Gerontological Nursing, 48(6), 13-18.].


Subject(s)
Caregivers , Dementia , Adult Children , Aged , Dementia/therapy , Female , Humans , Male
7.
J Clin Nurs ; 28(23-24): 4177-4189, 2019 Dec.
Article in English | MEDLINE | ID: mdl-31323707

ABSTRACT

AIMS: To examine prevalence, types, challenges and the impact of medical/nursing tasks (MNT) on caregivers of older adults with dementia. BACKGROUND: Medical/nursing tasks have been perceived as a professional healthcare role; however, research shows that many caregivers of older adults with dementia perform those tasks in the home, such as giving injections, tube feedings or operation of medical equipment. Little is known about the caregivers' challenges in engaging in these MNT. DESIGN: Integrative review. METHODS: Ovid MEDLINE, CINAHL, PsycINFO and Web of Science databases were searched to explore MNT among caregivers of older adults with dementia who lived in a community setting. Four quantitative and nine qualitative studies published between 1980-2018 were included. Overall, process of the review was guided by PRISMA. RESULTS: About 67% of U.S. caregivers of older adults with dementia performed MNT, including managing multiple medications, wound care and nutritional management. Care recipients' cognitive impairment complicated the provision of those tasks due to their limited cognitive functioning, behavioural changes, comorbidities and complex medication regimen. Insufficient information and training from healthcare professionals as well as caregivers' age and their own health problems made performance of those tasks even more challenging. As a result, caregivers frequently suffered from emotional distress such as worrying, anxiety and sleep disturbance. CONCLUSIONS: Medical/nursing tasks have become one of the daily tasks of caregivers of older adults with dementia within the home. However, the tasks are difficult and complicated, and inadequate support from healthcare professionals may compromise the caregivers' well-being. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals should provide education and should be aware of caregivers' needs related to MNT. Structured-medical information, skill-based instructions and hands-on training may be beneficial to decrease the caregivers' distress from MNT.


Subject(s)
Caregivers/psychology , Dementia/nursing , Aged , Caregivers/education , Humans , Nurse's Role , Qualitative Research , Systematic Reviews as Topic
8.
Nurs Educ Perspect ; 39(4): 235-237, 2018.
Article in English | MEDLINE | ID: mdl-29771748

ABSTRACT

Although many nursing programs provide diversity training to enhance the understanding of cultural influences on health care, little is known about outcomes. This is due in part to a lack of consensus regarding definitions and measures. The purpose of this study was to examine a set of self-perceptions defined as personal growth, attributed by graduate nursing students (N = 41) to an eight-week diversity course. Participants reported modest levels of personal growth. Educators can adapt the instrument and method of this study to measure student attributions of growth to any aspect of nursing education.


Subject(s)
Cultural Diversity , Education, Nursing, Baccalaureate , Education, Nursing , Students, Nursing , Delivery of Health Care , Humans
9.
J Gerontol Nurs ; 44(2): 33-40, 2018 Feb 01.
Article in English | MEDLINE | ID: mdl-28990634

ABSTRACT

The purpose of the current study was to examine understanding of end-of-life (EOL) decision-making terminology among family caregivers of African American older adults with dementia. This qualitative descriptive study was part of a larger mixed-methods study from which a subset of caregivers (n = 18) completed interviews. Data were analyzed using descriptive statistics and content analyses guided by methods of qualitative analysis. Caregiver interpretation of EOL decision-making terminology varied between associations before and/or after death. EOL decision making was most often a family decision, based on past experiences, and included reliance on resources such as faith or spirituality and health care providers. Patients and families attach meaning to health care terms that should be aligned with health care providers' understanding of those terms. Results provide insight to improve EOL decision making in this population via tailored interventions for patients, families, and health care providers. [Journal of Gerontological Nursing, 44(2), 33-40.].


Subject(s)
Black or African American/psychology , Comprehension , Decision Making , Dementia/ethnology , Health Literacy , Terminal Care , Aged , Caregivers/psychology , Dementia/psychology , Female , Humans , Male , Qualitative Research , Terminology as Topic
10.
J Geriatr Psychiatry Neurol ; 30(6): 324-330, 2017 Nov.
Article in English | MEDLINE | ID: mdl-28954594

ABSTRACT

OBJECTIVE: Subjective memory change (SMC) in older individuals may represent a harbinger of cognitive decline. This study examined the factors associated with SMC in older African Americans (AA), who have greater risk of developing dementia. We predicted that symptoms of depression and anxiety, as well as the total number of cerebrovascular risk factors (tCVRFs), but not performances on objective memory measures, would be positively associated with SMC. METHODS: Ninety-six AA completed brief cognitive testing and answered questions about mood and memory at their primary care appointment. Vascular data were obtained from medical records. RESULTS: Symptoms of depression and anxiety, but not performances on objective memory measures, were positively associated with SMC, t(χ2(1) = 16.55 and 12.94, respectively, both P < .001). In nondepressed participants, the tCVRF was important in distinguishing between those with and without SMC. CONCLUSIONS: In older AA, symptoms of depression or anxiety were associated with SMC. In nondepressed AA, the tCVRFs were important in distinguishing between those with and without SMC.


Subject(s)
Affect/physiology , Anxiety/psychology , Cerebrovascular Disorders/etiology , Depression/psychology , Memory Disorders/psychology , Black or African American , Aged , Female , Humans , Male , Risk Factors
11.
Cogn Behav Neurol ; 30(3): 90-97, 2017 09.
Article in English | MEDLINE | ID: mdl-28926416

ABSTRACT

BACKGROUND: Although blood pressure (BP) variability has been reported to be associated with cognitive impairment, whether this relationship affects African Americans has been unclear. We sought correlations between systolic and diastolic BP variability and cognitive function in community-dwelling older African Americans, and introduced a new BP variability measure that can be applied to BP data collected in clinical practice. METHODS: We assessed cognitive function in 94 cognitively normal older African Americans using the Mini-Mental State Examination (MMSE) and the Computer Assessment of Mild Cognitive Impairment (CAMCI). We used BP measurements taken at the patients' three most recent primary care clinic visits to generate three traditional BP variability indices, range, standard deviation, and coefficient of variation, plus a new index, random slope, which accounts for unequal BP measurement intervals within and across patients. RESULTS: MMSE scores did not correlate with any of the BP variability indices. Patients with greater diastolic BP variability were less accurate on the CAMCI verbal memory and incidental memory tasks. Results were similar across the four BP variability indices. CONCLUSIONS: In a sample of cognitively intact older African American adults, BP variability did not correlate with global cognitive function, as measured by the MMSE. However, higher diastolic BP variability correlated with poorer verbal and incidental memory. By accounting for differences in BP measurement intervals, our new BP variability index may help alert primary care physicians to patients at particular risk for cognitive decline.


Subject(s)
Blood Pressure Monitoring, Ambulatory/methods , Cognition/physiology , Black or African American , Aged , Female , Humans , Male
12.
J Med Internet Res ; 18(8): e218, 2016 08 11.
Article in English | MEDLINE | ID: mdl-27515151

ABSTRACT

BACKGROUND: Consumer health information technology (IT) solutions are designed to support patient health management and have the ability to facilitate patients' health information communication with their social networks. However, there is a need for consumer health IT solutions to align with patients' health management preferences for increased adoption of the technology. It may be possible to gain an understanding of patients' needs for consumer health IT supporting their health information communication with social networks by explicating how they have adopted and adapted social networking sites, such as Facebook, for this purpose. OBJECTIVE: Our aim was to characterize patients' use of all communication mechanisms within Facebook for health information communication to provide insight into how consumer health IT solutions may be better designed to meet patients' communication needs and preferences. METHODS: This study analyzed data about Facebook communication mechanisms use from a larger, three-phase, sequential, mixed-methods study. We report here on the results of the study's first phase: qualitative interviews (N=25). Participants were over 18, used Facebook, were residents or citizens of the United States, spoke English, and had a diagnosis consistent with type 2 diabetes. Participants were recruited through Facebook groups and pages. Participant interviews were conducted via Skype or telephone between July and September 2014. Data analysis was grounded in qualitative content analysis and the initial coding framework was informed by the findings of a previous study. RESULTS: Participants' rationales for the use or disuse of a particular Facebook mechanism to communicate health information reflected six broad themes: (1) characteristics and circumstances of the person, (2) characteristics and circumstances of the relationship, (3) structure and composition of the social network, (4) content of the information, (5) communication purpose, and (6) attributes of the technology. CONCLUSIONS: The results of this study showed that participants consider multiple factors when choosing a Facebook mechanism for health information communication. Factors included what information they intended to share, what they were trying to accomplish, attributes of technology, and attributes and communication practices of their social networks. There is a need for consumer health IT that allows for a range of choices to suit the intersectionality of participants' rationales. Technology that better meets patients' needs may lead to better self-management of health conditions, and therefore, improve overall health outcomes.


Subject(s)
Consumer Health Information/methods , Health Communication/methods , Health Information Exchange , Internet , Social Networking , Adult , Female , Humans , Male , Middle Aged , United States
13.
J Med Internet Res ; 16(10): e243, 2014 Oct 27.
Article in English | MEDLINE | ID: mdl-25348050

ABSTRACT

BACKGROUND: Obtaining access to a demographically and geographically diverse sample for health-related research can be costly and time consuming. Previous studies have reported mixed results regarding the potential of using social media-based advertisements to overcome these challenges. OBJECTIVE: Our aim was to develop and assess the feasibility, benefits, and challenges of recruiting for research studies related to consumer health information technology (IT) by leveraging the social structures embedded in the social networking platform, Facebook. METHODS: Two recruitment strategies that involved direct communication with existing Facebook groups and pages were developed and implemented in two distinct populations. The first recruitment strategy involved posting a survey link directly to consenting groups and pages and was used to recruit Filipino-Americans to a study assessing the perceptions, use of, and preferences for consumer health IT. This study took place between August and December 2013. The second recruitment strategy targeted individuals with type 2 diabetes and involved creating a study-related Facebook group and asking administrators of other groups and pages to publicize our group to their members. Group members were then directly invited to participate in an online pre-study survey. This portion of a larger study to understand existing health management practices as a foundation for consumer health IT design took place between May and June 2014. In executing both recruitment strategies, efforts were made to establish trust and transparency. Recruitment rate, cost, content of interaction, and characteristics of the sample obtained were used to assess the recruitment methods. RESULTS: The two recruitment methods yielded 87 and 79 complete responses, respectively. The first recruitment method yielded a rate of study completion proportionate to that of the rate of posts made, whereas recruitment successes of the second recruitment method seemed to follow directly from the actions of a subset of administrators. Excluding personnel time, the first recruitment method resulted in no direct costs, and the second recruitment method resulted in a total direct cost of US $118.17. Messages, posts, and comments received using both recruitment strategies reflected ten themes, including appreciation, assistance, clarification, concerns, encouragement, health information, interest, promotion, solicitations, and support. Both recruitment methods produced mixed results regarding sample representativeness with respect to characteristics such as gender, race, and ethnicity. CONCLUSIONS: The results of the study demonstrate that leveraging the social structures of Facebook for health-related research was feasible for obtaining small samples appropriate for qualitative research but not for obtaining large samples needed for quantitative research. The content of interactions with members of the target population prompted ethical deliberations concerning suitable target communities and appropriate boundaries between researchers and participants. Widespread replication of this method would benefit from a broad discussion among researchers, social media users, social media companies, and experts in research ethics to address appropriate protocols for such interactions.


Subject(s)
Consumer Health Information/methods , Patient Selection , Social Media , Social Networking , Adolescent , Adult , Aged , Disease Management , Female , Humans , Male , Middle Aged , Young Adult
14.
Res Gerontol Nurs ; 17(1): 9-16, 2024.
Article in English | MEDLINE | ID: mdl-38261625

ABSTRACT

Achieving health equity requires creating evidence that reflects the nuance and diversity of experiences among populations disproportionately impacted by age- and race-related disparities. Community-engaged research (CEnR) is one way to pursue equity in research on health and aging to ensure the relevance and translational potential of findings. The current review synthesizes best practices regarding CEnR that promote health equity among older adults, including an overview of CEnR, benefits, and fundamental principles, and three research exemplars from the authors' CEnR. Finally, we discuss these best practices and considerations for advancing CEnR to reduce health disparities experienced by historically underserved older adults and their families. [Research in Gerontological Nursing, 17(1), 9-16.].


Subject(s)
Geriatric Nursing , Health Equity , Humans , Aged , Health Promotion , Aging
15.
Dementia (London) ; 22(4): 875-909, 2023 May.
Article in English | MEDLINE | ID: mdl-36802973

ABSTRACT

Evidence supports that older adults with cognitive impairment can reliably communicate their values and choices, even as cognition may decline. Shared decision-making, including the patient, family members, and healthcare providers, is critical to patient-centered care. The aim of this scoping review was to synthesize what is known about shared decision-making in persons living with dementia. A scoping review was completed in PubMed, CINAHL, and Web of Science. Keywords included content areas of dementia and shared decision-making. Inclusion criteria were as follows: description of shared or cooperative decision making, cognitively impaired patient population, adult patient, and original research. Review articles were excluded, as well as those for which the formal healthcare provider was the only team member involved in the decision-making (e.g., physician), and/or the patient sample was not cognitively impaired. Systematically extracted data were organized in a table, compared, and synthesized. The search yielded 263 non-duplicate articles that were screened by title and abstract. Ninety-three articles remained, and the full text was reviewed; 32 articles were eligible for this review. Studies were from across Europe (n = 23), North America (n = 7), and Australia (n = 2). The majority of the articles used a qualitative study design, and 10 used a quantitative study design. Categories of similar shared decision-making topics emerged, including health promotion, end-of-life, advanced care planning, and housing decisions. The majority of articles focused on shared decision-making regarding health promotion for the patient (n = 16). Findings illustrate that shared decision-making requires deliberate effort and is preferred among family members, healthcare providers, and patients with dementia. Future research should include more robust efficacy testing of decision-making tools, incorporation of evidence-based shared decisionmaking approaches based on cognitive status/diagnosis, and consideration of geographical/cultural differences in healthcare delivery systems.


Subject(s)
Decision Making , Dementia , Humans , Aged , Patient-Centered Care , Delivery of Health Care , Qualitative Research
16.
JMIR Res Protoc ; 12: e49679, 2023 Jul 24.
Article in English | MEDLINE | ID: mdl-37486759

ABSTRACT

BACKGROUND: Alzheimer disease and related dementias (ADRD) pose significant challenges as chronic health conditions in the United States. Additionally, there are notable disparities in the diagnosis and prevalence of ADRD among diverse populations. Specifically, African American populations have a higher risk of developing late-onset ADRD than White people, and missed diagnoses of ADRD are more common among older African American populations than older White populations. These disparities also impact African American ADRD family caregivers. OBJECTIVE: The overall goal of this project is to develop a culturally informed, lay provider psychoeducational intervention named Senior Companion Program Plus (SCP Plus), which is specifically designed for African American ADRD caregivers and is potentially accessible, affordable, and sustainable. METHODS: In the proposed explanatory sequential mixed methods study, a randomized controlled trial will be used that includes 114 African American family caregivers of a relative with ADRD who will participate in the 3-month SCP Plus program. RESULTS: The study was funded on September 15, 2018, by the National Institutes of Health (1R15AG058182-01A1). Data collection began on May 16, 2019, but due to COVID-19 restrictions, ended 12 months into the planned 27-month recruitment period on March 31, 2023. The study was completed in June 30, 2023, and currently the results are being analyzed. CONCLUSIONS: The SCP Plus offers promise as an intervention that utilizes an existing platform for the delivery of a lay provider intervention and offers a novel approach for addressing gaps in accessible, community-based support for caregivers of people with ADRD. TRIAL REGISTRATION: ClinicalTrials.gov NCT03602391; https://classic.clinicaltrials.gov/ct2/show/NCT03602391. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/49679.

17.
Am J Hosp Palliat Care ; : 10499091231210290, 2023 Oct 25.
Article in English | MEDLINE | ID: mdl-37880855

ABSTRACT

BACKGROUND: Pain is often underreported and under-treated in older adults with dementia. The role of family caregivers (FCGs) in managing pain for their loved ones with dementia living in community has been significantly burdensome. Surprisingly, research has not delved into the experiences of FCGs' concerning pain management in this context. METHODS: A qualitative descriptive study was conducted to gain a deep understanding of FCGs' experiences in managing pain for their loved ones. Family caregivers participated in semi-structured face-to-face or telephone interviews. Inclusion criterion included being an adult providing care to community-dwelling older adults with dementia. Recruitment stopped upon reaching thematic saturation. Basic demographic characteristics was also collected. Constant comparison analytic method was employed. RESULTS: The study included 25 FCGs in central Virginia, spanning ages from 29 to 95. Participants were predominantly white, female, married, and had a minimum high school education. Most of them were adult children (52%) or the spouses (28%) of the care recipients. Four thematic categories emerged around exploring FCGs' pain management experiences: (1) Values; (2) Barriers; (3) Support; and (4) Adaptation. Each theme included sub-themes. CONCLUSION: Family caregivers follow their values to make decisions in pain management. Barriers existed for effective pain management. Adaptation and support from professional or formal caregivers greatly improved FCGs' perception of their competence in pain management. The finding underscores the need for further research and the development of interventions aimed at enhancing FCGs' perception of self-efficacy in this crucial aspect of caregiving.

18.
JMIR AI ; 22023.
Article in English | MEDLINE | ID: mdl-38333424

ABSTRACT

Background: Artificial intelligence (AI) is as a branch of computer science that uses advanced computational methods such as machine learning (ML), to calculate and/or predict health outcomes and address patient and provider health needs. While these technologies show great promise for improving healthcare, especially in diabetes management, there are usability and safety concerns for both patients and providers about the use of AI/ML in healthcare management. Objectives: To support and ensure safe use of AI/ML technologies in healthcare, the team worked to better understand: 1) patient information and training needs, 2) the factors that influence patients' perceived value and trust in AI/ML healthcare applications; and 3) on how best to support safe and appropriate use of AI/ML enabled devices and applications among people living with diabetes. Methods: To understand general patient perspectives and information needs related to the use of AI/ML in healthcare, we conducted a series of focus groups (n=9) and interviews (n=3) with patients (n=40) and interviews with providers (n=6) in Alaska, Idaho, and Virginia. Grounded Theory guided data gathering, synthesis, and analysis. Thematic content and constant comparison analysis were used to identify relevant themes and sub-themes. Inductive approaches were used to link data to key concepts including preferred patient-provider-interactions, patient perceptions of trust, accuracy, value, assurances, and information transparency. Results: Key summary themes and recommendations focused on: 1) patient preferences for AI/ML enabled device and/or application information; 2) patient and provider AI/ML-related device and/or application training needs; 3) factors contributing to patient and provider trust in AI/ML enabled devices and/or application; and 4) AI/ML-related device and/or application functionality and safety considerations. A number of participant (patients and providers) recommendations to improve device functionality to guide information and labeling mandates (e.g., links to online video resources, and access to 24/7 live in-person or virtual emergency support). Other patient recommendations include: 1) access to practice devices; 2) connection to local supports and reputable community resources; 3) simplified display and alert limits. Conclusion: Recommendations from both patients and providers could be used by Federal Oversight Agencies to improve utilization of AI/ML monitoring of technology use in diabetes, improving device safety and efficacy.

19.
Healthcare (Basel) ; 11(13)2023 Jul 07.
Article in English | MEDLINE | ID: mdl-37444800

ABSTRACT

African Americans adults are disproportionately affected by Alzheimer's disease and related dementias (ADRD) and are underrepresented in research about ADRD. Reducing gaps in the knowledge about ADRD in the African American community is important for addressing dementia care disparities. The existing psychoeducation interventions are often limited by cost and scalability; for these reasons, lay provider (i.e., volunteer) interventions are of increasing interest in ADRD research. The purpose of this study was to evaluate a training of African American Senior Companion (SC) volunteers (n = 11) with dementia-specific knowledge (i.e., Senior Companion Program/SCP Plus), as part of a culturally informed, in-home, psychoeducational intervention for African American ADRD family caregivers. Learning outcomes were measured pre- and post-training, using the Knowledge of Alzheimer's Disease/dementia scale (KAD), the Sense of Competence Questionnaire, and the Preparedness for Caregiving Scale. The results showed significant improvements in knowledge of Alzheimer's disease/dementia, one competence item, "It is clear to me how much care my care recipient needs", and preparedness for caregiving. Overall, the study findings suggest the SCP Plus is a promising, culturally relevant, and potentially scalable lay provider training for ADRD with potential benefits that augment the existing Senior Companion Program.

20.
Front Digit Health ; 5: 1193920, 2023.
Article in English | MEDLINE | ID: mdl-37274765

ABSTRACT

The maternal health crisis in the United States is becoming increasingly worse, with disparities continuing to escalate among marginalized populations. mHealth can contribute to addressing the Social Determinants of Health (SDOH) that produce inequities in maternal morbidity and mortality. Reducing inequities through mHealth can be achieved by designing these technologies to align with SDOH. As mHealth developed to support maternal health has primarily supported the extension of clinical care, there is an opportunity to integrate frameworks and methods from human factors/ergonomics and public health to produce thorough comprehension of SDOH through intentional partnerships with marginalized populations. Potential for this opportunity is presented through a case study derived from a community-based participatory research process focused on transportation access to maternal health services. Through multi-faceted, interdisciplinary, and community-based approaches to designing mHealth that attends to the systemic factors that generate and escalate inequities, improvements in the maternal health crisis could be realized.

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