Abstract Cultural adaptation and tailoring of caregiving interventions has garnered greater attention in part due to high levels of unmet need and poor intervention outcomes among dementia caregivers from racial and cultural groups. Additionally, there is a growing interest in understanding intervention mechanisms. We conducted a formative analysis of the process employed in the design of an intergenerational training program to support elders within the Latine community. A content analysis of memos and stakeholder listening sessions and document review guided this analysis. Framed within a discussion on the continuum of cultural adaptation, we report on lessons learned. Lessons include: 1) embracing community-led design, 2) demonstration of partnership commitment to facilitate trust-building, 3) consistent appreciative inquiry, and 4) demonstration of cultural centeredness within the partnership.
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.
Abstract Background African Americans are disproportionately impacted by Alzheimer’s disease and related dementias (ADRD), with family members providing the majority of support and care. Dementia caregivers often face high levels of stress and burden which contribute to poor physical and psychological health outcomes. African American dementia caregivers often face greater risk for stress and burden with discrepant evidence on whether this leads to worse outcomes compared to counterparts. Yet African American dementia caregivers remain under‐included in research designed to understand and ameliorate the stress and burden of caregiving. Our study aimed to understand African American dementia caregivers’ perspectives and appraisal of stressors surrounding caregiving and stressful events, such as hospitalization of the person with ADRD. Methods We harnessed qualitative interview data from the Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations (SUPPORT) Study, a multi‐site study designed to determine family caregiver perspectives surrounding hospitalizations for people with ADRD residing in highly disadvantaged neighborhoods. Data from 30 dementia caregivers who self‐identified as African American were analyzed using thematic analysis. Results All participants described the presence of stressors and stressful events related to their life broadly and to dementia caregiving more specifically. However, there was great variation in the described degree of stressors in caregiver’s daily life. Caregivers experiencing a greater number, more recent, and more acute stressors described greater burden in their daily life. Long‐standing stressors, such as family conflict and financial hardship, sometimes ‘resurfaced’ with the proximity and role changes brought on by caregiving. Other individual and situational factors, such as one’s own health or status as a ‘sandwich caregiver,’ or the habits and preferences of the person with ADRD, could serve as contributors to overall stress. Few caregivers related stressors to long‐term outcomes, though some described strategies to seek formal mental health counseling. Conclusions African American dementia caregivers described a variety of acute and ongoing stressors that related not only to caregiving for the person with ADRD but also the caregiver’s personal health and their broader familial and neighborhood context, signaling the need for adaptive caregiver support interventions capable of addressing intervention targets across various stressors.
Abstract African American (AA) family dementia caregivers report high unmet needs, which often culminate in crisis – an unplanned stressful situation requiring immediate decision. However, perspectives from AA caregivers regarding crisis are lacking. To gain insight into caregivers’ conceptualization and experiences of crisis, we used community/coalitional-based recruitment of AA caregivers to conduct semi-structured interviews with 34 AA caregivers which were analyzed using thematic analysis (N=34, 94% female, 56% ages 65 to 74). AA caregivers largely perceived crisis as stressful events, a normal part of caregiving and viewed management of these events as routine. Crisis was characterized as ongoing, lengthy or emergent, sometimes necessitating external support (.e.g. hospitalization). Caregivers managed crisis by increasing caregiving work, de-prioritizing their own health and needs, involving family and friends, and accessing emotional support through neighborhood connections. These perspectives can inform future culturally-tailored interventions that are responsive to AA strengths, values, and help seeking preferences.
Abstract Although there have been efforts to promote health equity and increase representational diversity in research, there is a gap in our understanding on how to integrate cultural considerations into the intervention design process. Dementia caregiving interventions too frequently lack prioritization and integration of community-directed and culturally appropriate inputs during intervention planning. Consequently, intervention fit among racial and ethnic populations is sometimes culturally incongruent and intervention acceptability in community settings is weakened. We conducted a formative analysis drawing from research team member memos, document review, World Cafes with Latine community residents, and group interviews with Latine organizational staff to understand the intervention development process of an intergenerational dementia training program to support elders within the Latine community. The design process integrated iterative periods of listening through data gathering, informing by applying learned information to the developing program, and affirming through validation. Our analysis demonstrates the need for a broad range of skills and capacity to facilitate effective intervention design (language mastery among key research team members, program design skills, listening, relationship building).
Abstract Interventions targeting persons living with dementia (PLWDs) provide an optimal touchpoint in the service delivery continuum for addressing the growing unmet needs of unpaid/family dementia caregivers. Services such as Adult Day Services (ADS) that generally target PLWDs can be enhanced by embedding an intervention that specifically targets informal caregivers. In a trial evaluating the ADS Plus intervention, open-ended feedback from ADS intervention staff and participants provided insights to improve the administrative, programmatic, and user experience of ADS Plus. Drawing on individual qualitative interviews (n=24), we conducted a thematic analysis revealing insights into the critical implementation factors supporting the effective delivery of ADS Plus. Identified themes included: 1) the relational, or person-centered, nature of the ADS Plus program, 2) the role of learning throughout implementation, 3) the influence of administrative structure on program delivery, and 4) contributors to the acceptability of ADS Plus. Our findings suggest that caregivers draw on multiple supports but that individually tailored supports for dementia care management must address the emotional needs of caregivers through relational intervention models. The effective delivery of ADS Plus was facilitated by perceived intervention benefits to caregivers, robust yet reasonable training for intervention staff, and the opportunity for adaptability in program delivery.
Abstract Greater inclusion of people living with dementia (PLWD) and their caregivers in research is a global research priority and an expressed priority of dementia advocacy organizations. Absent inclusion of PLWD and caregivers, our understanding of dementia-related experiences and optimization of care and caregiving interventions is stymied. Qualitative interviewing techniques constitutes a primary method for obtaining PLWD and caregivers’ perspectives. Yet, there is little guidance on use of qualitative interviewing techniques among PLWD and caregivers or discussion of potential challenges encountered, despite unique vulnerabilities faced throughout the research process, which may be further heightened among historically excluded groups. Meaningful progress toward inclusion of PLWD and their caregivers in dementia research necessitates broader examination of associated methodological and ethical considerations that arise in the conduct of interviews. Drawing from a large multi-site qualitative study of dementia caregivers with exposure to high levels of social disadvantage, we used a multiple-triangulation qualitative approach across interview transcripts, memos, and interviewer discussions to identify methodological and ethical challenges that arose during the interviewing process. Challenges were identified across all phases of research, and included relational concerns with PLWD and family members due to disclosure of sensitive information, risk of re-traumatization in discussing past experiences, multiple roles of caregivers with conflicting perspectives, variable recall capacity, limited prior appraisal of caregiving, and request of interviewers for medical advice or selecting services . We outline events evidencing these challenges and proposed strategies (i.e. use of research consults, interview debriefing) to strengthen research capacity to anticipate and respond to them.
