Novel Homozygous Missense Variant in GJA3 Connexin Domain Causing Congenital Nuclear and Cortical Cataracts

Congenital cataracts (CC) are responsible for approximately one-tenth of childhood blindness cases globally. Here, we report an African American family with a recessively inherited form of CC. The proband demonstrated decreased visual acuity and bilateral cataracts, with nuclear and cortical cataracts in the right and left eye, respectively. Exome sequencing revealed a novel homozygous variant (c.563A > G; p.(Asn188Ser)) in GJA3, which was predicted to be pathogenic by structural analysis. Dominantly inherited variants in GJA3 are known to cause numerous types of cataracts in various populations. Our study represents the second case of recessive GJA3 allele, and the first report in African Americans. These results validate GJA3 as a bona fide gene for recessively inherited CC in humans.

Black Ghosts of the Diasporic Memory in Jesmyn Ward’s Sing, Unburied, Sing

This article reads Jesmyn Ward’s Sing, Unburied, Sing (2017) as a novel that follows an African American family facing the ghosts of their past and present to resurrect buried stories that are unrelentingly interlocked with the legacy of slavery and the draconian racist practices of Jim Crow. I posit that the novel participates in the re-examination of the trope of the ghost as a healing asset that needs to be accommodated within the retrieval of memory work. Thus, the enactment of this African diasporic memory facilitates the encounter with their ghosts so that the family can start their healing processes and be provided with the tools and examples of how to keep on coming to terms together with and against the legacy of slavery and the present racist practices.

Research with Older Asian American Family Caregivers Pre- and During the Pandemic: Challenges and Lessons Learned

Research with hard-to-reach, monolingual adults from ethnic minority communities can present a multitude of challenges throughout the research process. This presentation will highlight challenges and lessons learned from two pilot studies with Vietnamese-, Cambodian-, and Korean-American family caregivers aged 50 and older. The first study (n=9) implemented a one-on-one, telephone-based psychosocial intervention before the COVID-19 pandemic; the second is an ongoing study (n=12) consisting of a group-based intervention via Zoom. Throughout recruitment, the following challenges arose: addressing the lack of familiarity with research among caregivers, earning the trust of caregivers, and identifying creative ways to recruit caregivers to participate. During study implementation, common challenges included: caregivers’ unpredictable daily schedule that made it difficult to participate in the scheduled classes, caregivers feeling apprehensive about technology and Zoom, access to reliable internet, and facilitating participation and engaging the voices of caregivers over the phone or via Zoom. Strategies were identified to address these barriers: engaging the support and collaboration of trusted, bilingual and bicultural community-based providers, building culturally-responsive rapport with caregivers, and seeking continuous feedback from caregivers to improve the appeal of the project implementation. The COVID-19 pandemic added an additional layer of difficulty to the research, requiring creativity and flexibility in implementation that took into consideration caregivers’ heightened anxiety, distress, lack of participation due to around-the-clock care, and loss and grief. The challenges and lessons learned from these studies could guide the development of future research efforts and strategies to effectively engage older hard-to-reach, monolingual Asian American caregivers.

A Systematic Review of Self-Care Interventions for African American Family Caregivers

African Americans (AA) family caregivers provide the bulk of unpaid care to persons living with dementia (PLWD). This role leaves little time for the adoption of self-care behaviors—critical to the prevention and management of chronic diseases. In this systematic review, we appraise caregiver self-care interventions that include AA caregivers of PLWD. PubMed, CINAHL, PsycINFO, Cochrane, and Embase databases were searched. Terms included AA/Black, self-care, caregiving, lifestyle, intervention, psychological stress, and faith/community. We initially found 250 references and after application of exclusion criteria and removal of redundant references, 18 articles were analyzed. Most interventions focused on impacting levels of caregiver burden, depression, physical activity, anxiety, or wellbeing. Psychoeducation, physical activity, and spiritually-focused interventions were most effective in improving outcomes in caregivers. Future studies should examine the impact of interventions on the prevention and management of chronic disease in AA caregivers of PLWD.

Family Caregiving in the Somali-American Community During COVID-19

This poster describes a study of Somali American family caregiving during the COVID-19 pandemic, specifically investing the unique caregiving challenges faced by Somali caregivers. The findings from this study, which was part of a larger study related to family caregiving, were drawn from in-depth interviews of ten Somali family caregivers in Minnesota. All interviews were conducted in Somali during the summer of 2020 and translated and transcribed by a certified translator and research assistant. The major themes that emerged from this study related to Visitation, Hospital Accompaniment, and Self Sacrifice. As Somali culture is centered around extended family connections, isolation places particular strain. Second, family members typically serve as advocates, translators and guides during hospital visits. The restrictions on hospital accompaniment due to COVID-19 caused increased stress and poorer care of family caregivers and their loved ones. Third, in the Somali community, family placement is a last resort. Caregivers reported great sacrifices in time, comfort and opportunities to care for family members during COVID-19. Most of the caregivers described their coping with these sacrifices in terms of radical acceptance and God consciousness. These findings have important implications for providing supports for Somali family caregivers.