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1.
J Alzheimers Dis ; 98(2): 445-463, 2024.
Article in English | MEDLINE | ID: mdl-38461501

ABSTRACT

Background: Adult day services (ADS) are an important and often underutilized support resource for older adults. For persons living with dementia (PLWD), ADS is an optimal access point to not only receive therapeutic and rehabilitative activities, but as a vehicle for respite/relief for dementia caregivers. Yet, there is currently a lack of research on integrating caregiver interventions into home and community-based services such as ADS. Objective: This paper reports on qualitative findings from the Improving Outcomes for Family Caregivers of Older Adults with Complex Conditions: The Adult Day Plus (ADS Plus) Program Trial. Methods: Drawing from semi-structured interviews conducted with family caregivers and ADS site staff, we conducted a thematic analysis to examine the implementation process of ADS Plus. Results: Themes address the relational nature of the intervention, learning, influence of the administrative infrastructure, and receptivity of ADS Plus. Conclusions: Our analysis determined that implementation of ADS Plus was feasible and accepted by site staff and dementia caregivers but also calls for additional evaluation of embedded caregiver support interventions across different contexts (e.g., staff size, limited technology environments) to further identify and test implementation mechanisms across settings.


Subject(s)
Caregivers , Dementia , Humans , Aged , Dementia/therapy , Health Services
2.
J Clin Nurs ; 33(4): 1550-1561, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38151803

ABSTRACT

AIM: To identify culturally related stressors that influence self-care in Chinese older adults with multiple chronic conditions. BACKGROUND: Effective self-care can improve health outcomes for chronic conditions, but implementing self-care is challenging. Individuals with multiple chronic conditions face even more self-care complexity than those with single chronic conditions, generating additional stressors. Although stressors have been found to negatively influence self-care in multiple chronic conditions, the role of culture in generating stressors has been neglected. DESIGN: This paper reports on the qualitative component of a larger mixed-methods study. Two free-response items in a survey were used to identify culturally related stressors that influence self-care. This report adhered to the SRQR guideline checklist. METHODS: Data were collected between January and April 2022. One hundred and thirty-eight free text responses asking participants to identify stressors that influenced their self-care effectiveness were analysed sequentially using deductive content analysis and thematic analysis. RESULTS: Findings from deductive content analysis largely confirmed published work in Western literature on stressors complicating self-care, including symptom burdens, financial strains, social disconnection, caregiving responsibilities and major life events. Findings from reflexive thematic analysis extended current literature by identifying three culturally relevant stressors: intergenerational obligations and commitments, ambivalence about receiving care and worries about potential problems. CONCLUSION: Chinese older adults with multiple chronic conditions identified a wide range of stressors that impacted their day-to-day self-care. This study provided valuable insights into culturally related stressors in older adults with multiple chronic conditions. Findings deepened our knowledge of cultural influences on the success of self-care in older adults with multiple chronic conditions, suggesting the potential for reaching populations across different cultures and regions. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Stressors that might influence self-care ability are important for nurses to assess in people with multiple chronic conditions. The design of self-care interventions should take a culturally tailored intergenerational family-centred approach to help mitigate the impact of stressors and ultimately improve patient outcomes. IMPACT: What problem did the study address? Stressors documented in older adults with MCCs have all been generated from research with Western populations. China is now home to the largest population of older people in the world. Understanding the influence of culturally relevant stressors on self-care in Chinese older adults with MCCs is lacking. What were the main findings? Findings from deductive content analysis largely confirmed published work in Western literature on stressors that complicated self-care, including symptom burdens, financial strains, social disconnection, caregiving responsibilities and major life events. Findings from reflexive thematic analysis extended current literature by identifying three culturally relevant stressors in older adults with MCCs in China: intergenerational obligations and commitments, ambivalence about receiving care and worries about potential problems. Where and on whom will the research have an impact? The research will have an impact on guiding nurses' assessment of culturally relevant stressors' impact on self-care for older adults with MCCs. In addition, findings could inform research and policy development to aim at mitigating the impact of culturally based stressors on self-care. REPORTING METHOD: This study adhered to the Standards for Reporting Qualitative Research (SRQR) guideline checklist. PATIENT OR PUBLIC CONTRIBUTION: During the member-checking process, the validation of findings for accuracy was carried out by 10 participants, who also found resonance between these findings and their own experiences.


Subject(s)
Multiple Chronic Conditions , Self Care , Humans , Aged , Qualitative Research , China
3.
J Am Geriatr Soc ; 71(11): 3435-3444, 2023 11.
Article in English | MEDLINE | ID: mdl-37548026

ABSTRACT

BACKGROUND: Persons living with dementia (PLWD) experience high rates of hospitalization and rehospitalization, exposing them to added risk for adverse outcomes including delirium, hastened cognitive decline, and death. Hospitalizations can also increase family caregiver strain. Despite disparities in care quality surrounding hospitalizations for PLWD, and evidence suggesting that exposure to neighborhood-level disadvantage increases these inequities, experiences with hospitalization among PLWD and family caregivers exposed to greater levels of neighborhood disadvantage are poorly understood. This study examined family caregiver perspectives and experiences of hospitalizations among PLWD in the context of high neighborhood-level disadvantage. METHODS: We analyzed data from the Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations (SUPPORT) study, an in-depth, multisite qualitative study examining hospitalization and rehospitalization of PLWD in the context of high neighborhood disadvantage, to identify caregiver perspectives and experiences of in-hospital care. Data were analyzed using rapid identification of themes; duplicate transcript review was used to enhance rigor. RESULTS: Data from N = 54 individuals (47 individual interviews, 2 focus groups with 7 individuals) were analyzed. Sixty-three percent of participants identified as Black/African American, 35% as non-Hispanic White, and 2% declined to report. Caregivers' experiences were largely characterized by PLWD receiving suboptimal care that caregivers viewed as influenced by system pressures and inadequate workforce competencies, leading to communication breakdowns and strain. Caregivers described poor collaboration between clinicians and caregivers with regard to in-hospital care delivery, including transitional care. Caregivers also highlighted the lack of person-focused care and the exclusion of the PLWD from care. CONCLUSIONS: Caregiver perspectives highlight opportunities for improving hospital care for PLWD in the context of neighborhood disadvantage and recognition of broader issues in care structure that limit their capacity to be actively involved in care. Further work should examine and develop strategies to improve caregiver integration during hospitalizations across diverse contexts.


Subject(s)
Caregivers , Dementia , Humans , Caregivers/psychology , Dementia/therapy , Qualitative Research , Focus Groups , Hospitals
4.
J Alzheimers Dis ; 84(1): 169-177, 2021.
Article in English | MEDLINE | ID: mdl-34487046

ABSTRACT

BACKGROUND: Family caregivers of people living with dementia benefit from supportive service use to address care needs associated with caregiving. Yet, research consistently demonstrates low rates of service use. Existing research has focused on barriers and facilitators to service use, with few studies examining the influence of caregivers' environmental context which often patterns social advantage and health services accessibility. OBJECTIVE: To describe the perspectives of caregivers residing in socially disadvantaged areas have in regards to utilizing supportive services. METHODS: Ten informal caregivers residing in socially disadvantaged areas participated in in-depth interviews that were analyzed using thematic analysis. RESULTS: Across all interviews, caregivers spontaneously described common precedents of service use (crisis or accumulation of unmet needs) and a distinct sequence of stages (seeking, initiating, and utilizing) surrounding service engagement. Major themes characterizing caregivers' experiences throughout service engagement highlight the varied influence of personal, familial, health, and social system-related factors. Findings demonstrate that caregivers may have different service needs as dementia progresses and that gerontological social work practice can facilitate service use. CONCLUSION: While preliminary, these findings provide important insights into new domains that can be further examined in future research and intervention efforts to improve supportive service use in socially disadvantaged and underserved communities.


Subject(s)
Caregivers/psychology , Dementia/nursing , Health Services Accessibility , Health Services Needs and Demand , Aged , Female , Humans , Interviews as Topic , Male , Rural Population
5.
BMJ Open ; 11(2): e043016, 2021 02 05.
Article in English | MEDLINE | ID: mdl-33550256

ABSTRACT

INTRODUCTION: People living with dementia (PLWD) are more likely to experience hospitalisation events (hospitalisation, rehospitalisation) than those without dementia. Many hospitalisation events, particularly rehospitalisation within 30 days of discharge, are thought to be avoidable. Yet our understanding of dementia-specific risk and protective factors surrounding avoidable hospitalisation is limited to specific intersetting transitions and predominantly clinician perspectives. Broader insights are needed to design accessible and effective solutions for reducing avoidable hospitalisations. We have designed the Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations (SUPPORT) Study to address these gaps. The objectives of the SUPPORT Study are to elicit and examine family caregiver, community and hospital providers' perspectives on avoidable hospitalisation events among PLWD, and to identify opportunities for effective prevention. METHODS AND ANALYSIS: We will conduct a multisite, descriptive qualitative study to interview around 100 family caregivers, community and hospital providers. We will identify and sample from regions and communities with higher socio-contextual disadvantage and hospital utilisation, and will aim to recruit individuals representing diverse racial/ethnic backgrounds. Interviews will follow a descriptive qualitative design in conjunction with constant comparison techniques to sample divergent situations and events. We will employ a range of analytical approaches to address specific research questions including thematic (inductive and deductive), comparative and dimensional analysis. Interviews will be conducted individually or in focus groups and follow a semistructured interview guide. ETHICS AND DISSEMINATION: The study is approved by the University of Wisconsin-Madison Institutional Review Board. Informed consent procedures will incorporate steps to evaluate capacity to provide informed consent in the event that participants express concerns with thinking or memory or demonstrate challenges recalling study details during the consent process to ensure capacity to consent to participation. A series of publicly available reports, seminars and symposia will be undertaken in collaboration with collaborating organisation partners.


Subject(s)
Caregivers , Dementia , Dementia/therapy , Focus Groups , Hospitalization , Humans , Qualitative Research
7.
Soc Work Public Health ; 34(8): 673-685, 2019.
Article in English | MEDLINE | ID: mdl-31578940

ABSTRACT

This case study discusses the implementation framework, effective strategies, and lessons learned of a university-community partnership addressing racial disparities in infant mortality. The partnership was successful at enhancing coordination within service delivery systems for maternal and child health programs. Results: the elimination of waiting list for services, maximizing federal and state reimbursement, the adoption of culturally-appropriate intervention practices, increasing racial diversity in the workforce, diffusing silos, and facilitating healthier relationships among service providers. Key lessons: activating the collective strengths among a network of diverse community stakeholders with shared interests, prioritizing black voices in the change process, and capacity building opportunities.


Subject(s)
Community Participation , Health Status Disparities , Infant Mortality , Universities , Capacity Building , Humans , Infant , Organizational Case Studies , Wisconsin/epidemiology
8.
Matern Child Health J ; 22(12): 1797-1804, 2018 Dec.
Article in English | MEDLINE | ID: mdl-30062651

ABSTRACT

Objectives Nationwide, African American women report higher stress levels and less access to pre- and postnatal resources. Wisconsin mirrors national infant mortality trends that show a persistent four-decade gap in infant survival between African American and White populations. The objective of the Milwaukee Birthing Project (MBP) was to implement a community-based health promotion intervention to improve birth outcomes for pregnant, low-income African American women, evaluate its effectiveness, and document its usefulness to inform development of future interventions. The project involved a mentoring and supportive relationship between 28 volunteer mentors (Sister Friends) and 20 pregnant women (Little Sisters). Methods The project implementation and evaluation were informed by the lifecourse perspective and a postcolonial feminist framework. Thematic analysis was used to analyze ethnographic data from monthly meetings and interviews with pregnant Little Sisters and Sister Friends. Results Our findings showed patterns both in community spaces and spaces created during the MBP. Program spaces contrasted with everyday life spaces and allowed women to experience community support. Based on our analysis, we classify these spaces as: (1) community spaces lacking support, (2) safe spaces of belonging and understanding, (3) spaces that foster meaningful interaction, and (4) safe, supportive spaces for other women in the future. Conclusions for Practice Future interventions should consider intentionally developing safe spaces to attain health goals. From a postcolonial feminist perspective, the voices of women who are at greatest risk for experiencing poor birth outcomes are crucial to the development of effective policies.


Subject(s)
Black or African American/statistics & numerical data , Health Promotion/methods , Healthcare Disparities , Poverty , Pregnancy Outcome/ethnology , Pregnant Women/ethnology , Premature Birth/ethnology , Prenatal Care/methods , Adult , Community Participation , Female , Humans , Infant , Infant Mortality , Infant, Low Birth Weight , Pregnancy , Pregnant Women/psychology , Program Evaluation , Residence Characteristics , Socioeconomic Factors , Wisconsin/epidemiology , Young Adult
9.
Matern Child Health J ; 18(2): 413-22, 2014 Feb.
Article in English | MEDLINE | ID: mdl-23595565

ABSTRACT

National experts are calling for more integrated approaches such as the life course perspective to reduce health disparities and achieve greater health equity. The translation and application of the life course perspective is therefore of great interest to public health planners, policy makers and funders to promote community-wide improvements in maternal and child health. However, few organizations have applied the life course perspective in designing strategic funding initiatives. For over three decades, Wisconsin has observed persistent racial disparities in birth outcomes. This complex public health issue led to the development of the Lifecourse Initiative for Health Families, a regional multi-million dollar funding initiative created and supported by the Wisconsin Partnership Program of the University of Wisconsin School of Medicine and Public Health (Created by the UW SMPH from an endowment following the conversion of Blue Cross Blue Shield United of Wisconsin, the Partnership Program makes investments in research, education, and public health and prevention initiatives that improve health and reduce health disparities in the state.). Over a 2-year period, the program funded four collaboratives to adopt a life course perspective and develop strategic plans for improving African American birth outcomes. The Twelve-point plan to close the black-white gap in birth outcomes provided the framework for the planning process. Despite the conceptual challenges, the life course perspective was embraced by the collaboratives, challenged community assumptions on the root causes of poor birth outcomes and provided a unifying funding construct for organizing and planning complementary individual-level interventions with social and physical environmental change strategies. These integrated and complimentary approaches provide a long-term opportunity to address the persistent racial birth outcome disparity in Wisconsin.


Subject(s)
Family Health/ethnology , Health Status Disparities , Infant Mortality/ethnology , Preconception Care/standards , Pregnancy Outcome/ethnology , Prenatal Care/standards , Racism/psychology , Social Determinants of Health , Black or African American/statistics & numerical data , Community Networks/economics , Community Networks/organization & administration , Community Networks/standards , Family Health/economics , Fathers , Female , Financial Support , Humans , Infant , Infant Mortality/trends , Male , Organizational Case Studies , Preconception Care/economics , Preconception Care/organization & administration , Pregnancy , Pregnancy Outcome/economics , Prenatal Care/economics , Prenatal Care/organization & administration , Public-Private Sector Partnerships/economics , Public-Private Sector Partnerships/organization & administration , Stress, Psychological/complications , Stress, Psychological/ethnology , Stress, Psychological/etiology , Wisconsin/epidemiology
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