African American Family Members Research Articles

African American experience of FTD: A sub‐cohort assessment of the FTD Insights Survey

AbstractBackgroundWhile efforts are underway to better understand the prevalence, incidence, pathophysiology, and phenomenology of FTD, most research participation has been dominated by persons of European descent. Better understanding of early signs, the diagnostic journey, and the functional impacts in historically underrepresented groups may help shed light on healthcare inequities, support the development of more inclusive research study design, and lay the foundation for more targeted care and interventions.MethodIn preparation for an Externally Led Patient‐Focused Drug Development (PFDD) meeting, the Association for Frontotemporal Degeneration (AFTD) and the FTD Disorders Registry (FTDDR) collaborated to develop the FTD Insights Survey. The online survey queried aspects of the lived experience of FTD from the patient/family/carer perspective.ResultOf the 1,796 respondents that completed the survey, twenty‐five represented the experience of African American persons diagnosed with FTD from the perspective of those diagnosed (n = 4) and care partners (n = 21). Two additional respondents reported on their experience as African American biological family members of those with FTD. Thirty‐six percent of African Americans needed to see 4 or more doctors before receiving an FTD diagnosis, compared to 18% of total respondents, and were more likely to initially receive a different diagnosis (80% vs. 45%). While patterns of the first symptoms were reported similarly across all participants, African Americans were more likely to report having initially experienced changes in thinking, spatial reasoning, or delusions/hallucinations. African Americans were also more likely to report distress related to language, sleep, and delusions/hallucinations and less likely to report no distress or distress related to cognitive symptoms. African American participants were more likely to endorse wanting a treatment to maintain independence and hold a job than overall participants.ConclusionThe African American perspectives reported on the FTD Insights Survey represent a small sample size of individuals with greater than average levels of education (76% had an Associate’s degree or higher). The experience they report overlaps with those of other respondents, but with key differences including more difficulty in access to timely diagnosis. More information is needed on the lived experience of FTD across people of different cultural, social, economic backgrounds.

Undoing the Knots: Five Generations of American Catholic Anti-Blackness by Maureen H. O’Connell

Reviewed by: Undoing the Knots: Five Generations of American Catholic Anti-Blackness by Maureen H. O’Connell Donna Toliver Grimes III As the Catholic Church in the United States works to confront the scourge and sin of racism, the timeliness of Undoing the Knots: Five Generations of American Catholic Anti-Blackness cannot be overstated. In the sea of contemporary books, podcasts and other platforms grappling with racism in the United States, this is a fresh scholarly exposure through one White Catholic’s personal racial exploration. It stands apart from courageous confessions about slaveholding ancestors and accounts of anxious introductions between African American and White family members. Usually, these stories are rooted in the rural South. Yet, situated in the northern city of Brotherly Love and Sisterly Affection, this is a bold launch into racism as embedded in good families and the church we love. O’Connell’s book credibly calls out “Anti-Blackness” among Irish American Catholics, their clergy and bishops. Anti-Blackness adds a fine point to the race discussions that we need today in our Catholic [End Page 65] parishes, schools, houses of formation, and organizations; in our families; and between God and ourselves. If we seem to upgrade racism jargon every few years, this book demonstrates that “Anti-Blackness” lays hands on the heart of the matter. Help us, Holy Spirit! Beginning with Irish Catholic sacramentality as a basis for racial reconciliation is intriguing and raised a few questions. Do twenty-first century Irish American Catholics harbor memories of their ancestors’ penitential ritual of rounding (14)? How could rounding or other lament practices serve Irish/White Catholics today? Gardeners and farmers may relate to the author’s detailed grafting metaphor as a description of becoming White Americans (62). Technical descriptions of the grafting process reveal the growth of Anti-Black posturing happening in the family, church, and society concurrently. Although excellent research could not reconstruct ancestors’ racial decisions, it offers sufficient indications that racial issues were among the concerns of five generations who ultimately chose group and self-interest over alliances with African Americans. New immigrants who were Irish and Catholic learned from their priests, employers, and preceding arrivals that “[W]hite disputes could be more easily settled if there were Black bodies on the bargaining table” (48). Is the above quote more or less relevant today? Is racial mercy a form of unearned grace? How is racial mercy related to others in “their chaos”? What spiritual practices open us to receive God’s racial mercy? The Upper Room of Whiteness begs the question of interactions with the women, children and maybe servants off-stage in that sanctuary? How is the hopeful message of our call for more than “being good and giving back” being activated? Donna Toliver Grimes United States Conference of Catholic Bishops Copyright © 2022 American Catholic Historical Society

Perspectives of African-American Family Members about Kidney Failure Treatment

Understanding African-American families' experiences with treatment for kidney failure is necessary for informing the delivery of family-centered care and the design of appropriate interventions. This qualitative study explored treatment-related questions, concerns, and family impacts among African-American family members of patients with pre-kidney failure and kidney failure. Thirty-five family members participated in focus groups stratified by patients' treatment experiences (pre-kidney failure, in-center hemodialysis, peritoneal dialysis, awaiting living-donor kidney transplantation, or post-transplantation). Family members raised questions and concerns about the psychological, lifestyle, and practical aspects of treatment. Similarly, discussions about family impacts emphasized psychosocial effects, lifestyle consequences, and the provision and receipt of support. Efforts to address these questions, concerns, and perceived family impacts through additional research, early and tailored education, and supportive interventions are needed.

Perspectives of African-American Family Members about Kidney Failure Treatment

Perspectives of African-American Family Members about Kidney Failure Treatment

Health behavior changes in African American family members facing lung cancer: Tensions and compromises

Behavioral interventions targeting cancer survivors often fail to address the clustering of unhealthy behaviors among family members and friends, and the impact of close relationships on behavior change. The study's aim was to identify factors associated with receptivity and preferences for lifestyle behavior change among family members of African-American survivors of lung cancer. Principles of social cognitive theory guided the design. A descriptive, qualitative study recruited 26 African-American family members of lung cancer survivors from two teaching hospitals in the southeastern United States. A 20-item Information Form collected demographic, health status, and health behavior information. Family members participated in one of three semi-structured focus group discussions. Four major themes emerged: family members and survivors both resisted the caregiver role; dramatic changes evoked by the diagnosis of lung cancer were facilitators and barriers to lifestyle choices; leaning on faith was the primary source of support; and these families live with a constant threat of multiple cancers. Findings emphasize the importance of meaningful conversations among health-care providers, survivors, and family members during the time of diagnosis, treatment, and recovery, so that family members are better prepared to cope with anticipated changes. This study highlights the stressors that affect family members and sheds light on their unique needs. The stressors limit their ability to change health behaviors. Family members need basic education, skills training, and support related to the lung cancer diagnosis and other cancers. Current methods to provide these services are limited in their accessibility, availability, and effectiveness.

The Development of a Culturally Adapted Pilot Intervention for African American Family Members of Homicide Victims: A Preliminary Report.

African Americans are disproportionately impacted by homicide in the United States. Individuals who have lost a relative to homicide often experience symptoms of complicated grief. The objective of this study was to explore the impact of a culturally tailored psychoeducational pilot intervention whose development was informed by a conceptual model of coping for African American survivors of homicide victims and was designed to (a) educate participants about the manifestation of complicated grief and symptoms and (b) help participants develop ways to cope with their grief. Pre- and post-test results indicate preliminary support for this encouraging intervention in achieving its intended outcomes to help participants identify complicated grief symptoms, supports, and services to help them manage their grief. Implications for posthomicide research and practice are discussed.

Successful Undergraduate African American Men's Navigation and Negotiation of Academic and Social Counter-Spaces as Adaptation to Racism at Historically White Institutions

Extant research has extensively illuminated African American men's experiences with racism at historically White institutions. Their efforts to persist and graduate meant many of them learned to navigate and respond to racism on and off campus. Such learned behavior has necessitated adopting coping mechanisms to acculturate to the social, cultural, and academic environments within and surrounding institutions of higher education. Drawn from a larger study, this qualitative case study explored the experiences and the strategies used by two participants as they self-navigated the institution's support programs, affinity groups, and campus organizations to achieve personal and academic success. Academically persistent and successful African American men formed unique personal networks; sought out support; and received help from African American organizations, family members, faculty members, and staff members. This research advances a growing body of literature focusing on the success strategies of undergraduate African American men pursuing their educational goals at historically White institutions.

Making sense of loss through spirituality: Perspectives of African American family members who have experienced the death of a close family member to cancer.

Among African Americans, spirituality is meaning or purpose in life and a faith in God who is in control of health and there to provide support and guidance in illness situations. Using qualitative methods, we explored the use of spirituality to make sense of the end-of-life and bereavement experiences among family members of a deceased cancer patient. Data in this report come from 19 African Americans who experienced the loss of a family member to cancer. A qualitative descriptive design was used with criterion sampling, open-ended semistructured interviews, and qualitative content analysis. Participants made sense of the death of their loved one using the following five themes: Ready for life after death; I was there; I live to honor their memory; God's wisdom is infinite; and God prepares you and brings you through. These five themes are grounded in conceptualizations of spirituality as connectedness to God, self, and others.Significance of resultsOur findings support the results that even during bereavement, spirituality is important in the lives of African Americans. African American family members might struggle with issues related to life after death, their ability to be physically present during end-of-life care, and disentangling beliefs around God's control over the beginning and ending of life. The findings in this report can be used to inform healthcare providers to better support and address the needs for support of African American family members during end-of-life and bereavement experiences.

Casting a Wider Net: Engaging Community Health Worker Clients and Their Families in Cancer Prevention.

Engaging family members in an intervention to prevent breast and cervical cancer can be a way to reach underserved women; however, little is known about whether family member recruitment reaches at-risk women. This study reports the kin relationship and risk characteristics of family members who chose to participate in the Kin KeeperSM cancer prevention intervention, delivered by community health workers (CHWs) via existing community programs. African American, Latina, and Arab family members reported risk factors for inadequate screening, including comorbid health conditions and inadequate breast or cervical cancer literacy. CHW programs can be leveraged to reach underserved families with cancer preventive interventions.

Parenting African American Children With Autism: The Influence of Respect and Faith in Mother, Father, Single-, and Two-Parent Care.

Parents are the most significant contributor to care of children with autism spectrum disorder (ASD), and as such research on African American parenting in ASD is conspicuously absent. Findings relevant to parenting are discussed from a study with urban African American families caring for children with ASD. An ethnonursing study was conducted with 24 African American family members of children with ASD and 28 professionals. Data were analyzed and reported as themes. Two universal themes of were found of respect and faith in God and family that influenced parental care. Two diverse themes of mother's watchful care and father's protective care, along with differences in feelings of isolation and dependence on supports were found among single- and two-parent families. Discussion and Practice Implications: When health care professionals increase their knowledge and understanding of cultural practices in the parental care of children with ASD, they provide health care that is culturally congruent.

Shall We Overcome? Self-Efficacy, Teacher Licensure Exams, and African American Preservice Teachers

ABSTRACTThis article reports findings from a 3-year qualitative study exploring the experiences of African American preservice teachers as they prepared for the Praxis “basic skills” teacher-licensure exam, a gatekeeper to many teacher-education programs. Using the construct of self-efficacy, results illustrate how students assess their Praxis capabilities from (a) previous mastery or failure experiences with other standardized tests and classes from college to elementary school and (b) vicarious experiences from African American students, friends, and family members. The article provides recommendations to prepare students for preprofessional examinations such as Praxis that often limit the numbers of African American teachers eligible for certification.

End-of-Life Decision Making and Communication of Bereaved Family Members of African Americans with Serious Illness.

The study objective was to examine factors that influence African American (AA) family members' end-of-life care decision outcomes for a relative who recently died from serious illness. A cross-sectional descriptive study design was used. Binary logistic and linear regressions were used to identify factors associated with decision regret and decisional conflict. Forty-nine bereaved AA family members of AA decedents with serious illness who died two to six months prior to enrollment were recruited from the palliative care program in a safety net hospital and a metropolitan church in the Midwest. Measurements used were the Decisional Conflict, Decision Regret, Beliefs and Values, and Quality of Communication scales. Family members who reported higher quality of communication with health care providers had lower decisional conflict. Family members of decedents who received comfort-focused care (CFC) had significantly less decision regret than family members of those who received life-prolonging treatment (LPT). Family members who reported stronger beliefs and values had higher quality of communication with providers and lower decisional conflict. This research adds to a small body of literature on correlates of end-of-life decision outcomes among AAs. Although AAs' preference for aggressive end-of-life care is well-documented, we found that receipt of CFC was associated with less decision regret. To reduce decisional conflict and decision regret at the end of life, future studies should identify strategies to improve family member-provider communication, while considering relevant family member and decedent characteristics.

PC-FACS

PC-FACS

Race-related differences in the experiences of family members of persons with mental illness participating in the NAMI Family to Family Education Program.

Families play an important role in the lives of individuals with mental illness. Coping with the strain of shifting roles and multiple challenges of caregiving can have a huge impact. Limited information exists regarding race-related differences in families' caregiving experiences, their abilities to cope with the mental illness of a loved one, or their interactions with mental health service systems. This study examined race-related differences in the experiences of adults seeking to participate in the National Alliance on Mental Illness Family-to-Family Education Program due to mental illness of a loved one. Participants were 293 White and 107 African American family members who completed measures of problem- and emotion-focused coping, knowledge about mental illness, subjective illness burden, psychological distress, and family functioning. Multiple regression analyses were used to determine race-related differences. African American caregivers reported higher levels of negative caregiving experiences, less knowledge of mental illness, and higher levels of both problem-solving coping and emotion-focused coping, than White caregivers. Mental health programs serving African American families should consider targeting specific strategies to address caregiving challenges, support their use of existing coping mechanisms and support networks, and increase their knowledge of mental illness.

Concerns regarding the financial aspects of kidney transplantation: perspectives of pre‐transplant patients and their family members

African American and non-African American pre-transplant patients' and their families' concerns about the financial costs of kidney transplantation have not been well studied. We conducted structured group interviews among pre-transplant patients (seven African American, five non-African American) and their family members (six African American, five non-African American) to identify their concerns about transplant health insurance coverage, out-of-pocket expenses, and living donor expenses. We reviewed transcribed group audio recordings and identified common discussion themes. African American and non-African American patients and family members expressed uncertainty about which transplant-related costs were covered by health insurance and wanted information about how to choose insurance policies accordingly. Patients were particularly concerned about the impact of pre-existing illness on securing optimal health insurance, while family members wanted information about non-insurance-based financial resources. Both patients and family members expressed concern about paying for immunosuppressant medications and about gradual loss of insurance benefits after transplantation. Both patients and family members also expressed concern about potential financial hardships for living donors. African American and non-African American pre-transplant patients and families expressed a broad range of concerns about transplant health insurance policies, out-of-pocket expenses, non-insurance-based financial resources, and resources to address donors' financial burden. Efforts to improve education and develop more comprehensive transplant insurance policies are needed to facilitate informed decision-making for potential transplant recipients and donors.

“I Don’t Want to be a Guinea Pig”: Recruiting Older African Americans

“I Don’t Want to be a Guinea Pig”: Recruiting Older African Americans

Coping with grief responses among African American family members of homicide victims.

Research relevant to coping with grief for African American family members of homicide victims is limited. This retrospective study was conducted to determine the effects of gender, length of time since death, the traumatic impact of experiencing the homicide of a loved one, and the use of coping strategies to current grief reactions of African American family members of homicide victims (N = 44). Multiple regression analysis results suggest that gender and level of traumatic stress, related to posttraumatic stress symptomatology, predict current symptoms of grief. Women reported higher levels of current grief symptoms than men. Family members of homicide victims who reported higher levels of posttraumatic stress symptomology reported higher levels of current grief. Implications for research and recommendations for practitioners are discussed.

Understanding the Sociocultural Context of Coping for African American Family Members of Homicide Victims

The disproportionate representation of African American survivors of homicide victims places them at greater risk for compromised mental health. However, an examination of factors that influence how this population copes with this traumatic event is absent from the literature. This article elucidates the importance of sociocultural factors that influence coping resources and strategies for African Americans surviving the homicide of a loved one. A socioculturally responsive model of coping is presented that can be utilized in furthering the development of research and practice that is culturally responsive to the needs of African American survivors of homicide victims.

African American Bereaved Family Members' Perceptions of Hospice Quality: Do Hospices with High Proportions of African Americans Do Better?

Research suggests that racial differences in end-of-life care persist even among patients enrolled in hospice. The objective of the study was to examine the association between bereaved family members' satisfaction with hospice services and the proportion of African American (AA) patients in hospice. The 2007 and 2008 Family Evaluation of Hospice Care (FEHC) Survey examined family members' perceptions of the quality of care on several dimensions including: unmet need for pain, dyspnea, and emotional support; being informed about the patient's condition and what to expect as the patient was dying; being informed about medications and treatments for symptoms; coordination of care; and overall satisfaction with care. We examined the association between family members' perception along each domain and the proportion of AAs served by hospices surveyed. Of the 11,892 AA decedents in 678 hospice programs, 53.7% were female. The leading cause of death was cancer (51.6%). On univariate analysis, family members of decedents who died in hospices that had higher proportions of AAs were less likely to have concerns about unmet pain needs (odds ratio [OR] 0.84, 95% confidence interval [CI] 0.72-0.98), more likely to have concerns about coordination of care (1.28, 1.17-1.40), and less likely to perceive care as excellent or very good (0.73, 0.63-0.84). Coordination-of-care concerns and lower overall rating of care persisted in multivariable analyses. There were no other significant associations between family perceptions and proportions of AAs in hospice. Among hospices with higher proportions of AAs, family members have more concerns about coordination of care and have lower overall perceptions of quality.

We Fall Down: The African American Experience of Coping With the Homicide of a Loved One

Rates of homicide among African Americans are much higher than those of other racial or ethnic groups. Research has demonstrated that homicide can be psychologically debilitating for surviving family members. Yet, exploring the experiences of homicide victims’ surviving loved ones has received little attention. This study examined the coping strategies of African American survivors of homicide. Qualitative interviews were conducted with 8 African American family members (ages 18-82) of homicide victims. Survivors were recruited from the Massachusetts Office of Victim Services and from homicide survivor support, school, and community groups throughout the New England area. Interviews were conducted using open-ended questions derived from coping, support network, grief, and bereavement literatures. Results indicate that the primary coping strategies utilized by African American survivors of homicide victims are spiritual coping and meaning making, maintaining a connection to the deceased, collective coping and caring for others, and concealment. Implications for research and practice are discussed.