Sheryl T. Kelber

The Experience of High Levels of Grief in Caregivers of Persons with Alzheimer's Disease and Related Dementia

An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to describe the lived experience of 44 spouses and adult children who are caregivers of persons with Alzheimers disease and related dementias (ADRD) and scored high on the Marwit and Meuser Caregiver Grief Inventory, Short Form (MM-CGI-SF). This study presents qualitative results from a mixed-methods descriptive study (N = 201). Seven themes emerged from the qualitative data that detailed the caregiving experience of the individuals with high grief: (a) yearning for the past, (b) regret and guilt, (c) isolation, (d) restricted freedom, (e) life stressors, (f) systemic issues, and (g) coping strategies. The first 2 themes reflect grief reactions, whereas isolation, restricted freedom, life stressors, and systemic issues possessed elements of both grief and caregiver burden and stress. Coping strategies used by this group of caregivers included spiritual faith, social supports, and pets. Quantitative analysis confirmed that these themes are unique to individuals with high levels of grief compared with those with moderate/low levels of grief, except for the coping strategies of social support and spiritual faith. Caregivers with high levels of grief may benefit from supportive interventions that are based on reducing feelings of isolation, lack of freedom, and increased guilt and regret, while also addressing feelings of loss. Interventions that facilitate building a supportive network are suggested. Using a screening tool such as the MM-CGI-SF will help in identifying caregivers with high levels of grief who may be in need of additional support.

Spousal bereavement in older adults: common, resilient, and chronic grief with defining characteristics.

The purpose of this study was to identify empirically patterns of grief among 141 older bereaved spouses. A longitudinal hierarchical cluster procedure with the Ward agglomeration method was used to identify distinct clusters based on grief scores. Three clusters were identified: common (49%), resilient (34%), and chronic (17%) grief. Members of the common grief cluster experienced elevated levels of grief and depressive symptoms that decreased over time. Members of the resilient cluster experienced the lowest levels of grief and depression and the highest quality of life. The chronic grief cluster experienced the highest levels of grief and depression, more sudden deaths, the lowest self-esteem, and the highest marital dependency. The majority in this chronic cluster also met proposed criteria for a diagnosis of complicated grief. Five out of every six bereaved spouses adjusted well over time, and about a third of these showed considerable resilience without negative consequences. One out of six experienced a chronic grief syndrome. Early identification of this syndrome can lead to referral to newly emergent treatments specific for grief.

Relationship of Symptoms, Perceived Health, and Stigma With Quality of Life Among Urban HIV-Infected African American Men

OBJECTIVES To explore the relationship of symptom prevalence and intensity, perceptions of health, and stigma on quality of life (QOL) among HIV-infected African American men. DESIGN Cross-sectional correlational descriptive study. SAMPLES The sample consisted of HIV-infected African American men (N=55), all urban, age range 23-66 years (M=48.84, SD=7.67), average length of time since HIV diagnosis 10.79 years (SD=6.4). MEASUREMENTS A questionnaire consisting of 5 instruments was used: (a) sociodemographic characteristics, (b) Holzemer Signs and Symptom Checklist for HIV, (c) perceptions of health, (d) Berger HIV Stigma Scale, and (e) Holmes HIV/AIDS-Targeted Quality of Life Scale. RESULTS Prevalent symptoms were fatigue (98%), fear (92.7%), shortness of breath (92.7%), gastrointestinal upset (85.5%), numbness (80.0%), and headache (76.4%). Symptoms with the highest intensity were gastrointestinal upset, body changes, fear, and fatigue. Symptom intensity was significantly associated with the measures of stigma and QOL. CONCLUSIONS The results underscore the importance of incorporating a holistic view of the relationship of symptoms with QOL for HIV-infected African American men. Without efforts to ameliorate stigmatizing effects, however, nurses may be falling short in helping individual African American men with HIV infection achieve a better QOL.

Black African immigrant community leaders' views on participation in genomics research and DNA biobanking

BACKGROUND The emergence of DNA biobanks and the power they lend to genomics research promise substantial advances in disease prevention and treatment. Greater participation of racial/ethnic minority populations is necessary to assure a future of personalized medicine for all. PURPOSE The purpose of this study was to explore perspectives on genomics research and DNA biobanking among black African immigrants, an often overlooked US subpopulation. METHODS As part of a larger staged study using community-based participatory research (CBPR) methods, we conducted four focus groups with 27 leaders in the black African immigrant community, exploring perceptions about genomics, barriers, and facilitators to participation in DNA biobanks and ethical ways to engage communities. FINDINGS/DISCUSSION Prominent in their views on genomics research was the legacy of colonial mistreatment and exploitation by Western researchers in their home countries in sub-Saharan Africa. The central dilemma for participants was balancing responsibilities to protect their people from harm and to find solutions for African generations to come. They insisted that nothing short of a transformation of research practice would elicit the full and sustained participation of African immigrants in the genomics enterprise. CONCLUSION To better align practice and policy in the field of genomics research and DNA biobanking with values expressed by African immigrant leaders, it is recommended that the field adopt a CBPR model for research and a benefit-sharing model for policy.

Community leaders' perspectives on engaging African Americans in biobanks and other human genetics initiatives.

There is limited information about what African Americans think about biobanks and the ethical questions surrounding them. Likewise, there is a gap in capacity to successfully enroll African Americans as biobank donors. The purposes of this community-based participatory study were to: (a) explore African Americans’ perspectives on genetics/genomic research, (b) understand facilitators and barriers to participation in such studies, and (c) enlist their ideas about how to attract and sustain engagement of African Americans in genetics initiatives. As the first phase in a mixed methods study, we conducted four focus groups with 21 African American community leaders in one US Midwest city. The sample consisted of executive directors of community organizations and prominent community activists. Data were analyzed thematically. Skepticism about biomedical research and lack of trust characterized discussions about biomedical research and biobanks. The Tuskegee Untreated Syphilis Study and the Henrietta Lacks case influenced their desire to protect their community from harm and exploitation. Connections between genetics and family history made genetics/genomics research personal, pitting intrusion into private affairs against solutions. Participants also expressed concerns about ethical issues involved in genomics research, calling attention to how research had previously been conducted in their community. Participants hoped personalized medicine might bring health benefits to their people and proposed African American communities have a “seat at the table.” They called for basic respect, authentic collaboration, bidirectional education, transparency and prerogative, and meaningful benefits and remuneration. Key to building trust and overcoming African Americans’ trepidation and resistance to participation in biobanks are early and persistent engagement with the community, partnerships with community stakeholders to map research priorities, ethical conduct of research, and a guarantee of equitable distribution of benefits from genomics discoveries.

Eleven years of primary health care delivery in an academic nursing center.

Academic community nursing centers (CNCs) emphasize partnership with the communities they serve to provide access to services that promote, restore, and maintain health. In this study, selected data from an 11-year clinical data set are presented to show the scope of academic CNC nursing practice, describe client services and expanded nursing roles, show the use of a computerized clinical documentation system in tracking nursing practice, and assess the usefulness of the Lundeen conceptual model. The study design was a retrospective review of computerized client record data. The setting was a CNC located in the neighborhood center of a large federally subsidized housing development. The sample was 25,495 client visits to the CNC. Visit data were coded and entered into a relational data management program to facilitate analysis. Findings show an expansion over time of nursing practice and client services that include strong case management and management of illness care. Findings also suggest that a computerized clinical documentation system that specifically tracks nursing practice is vital if nurses are to identify and eventually be reimbursed for client care specific to nursing practice. Finally, the Lundeen conceptual model was shown to be useful across the continuum of care provided at CNCs.

DEPRESSION DURING EARLY RECOVERY FROM HEART SURGERY AMONG EARLY MIDDLE-AGE, MIDLIFE, AND ELDERLY WOMEN

Theories and studies about the psychological processes of midlife propose a transition that may result in a more integrated personality structure throughout the second half of life. This more integrated structure includes concepts such as generativity, self-assertion, and independence. However, this structure, especially in early middle-age, can be affected by a life-threatening health disruption such as heart disease. One hundred and fifty-five women participated in a cross-sectional survey designed to investigate depression in early middle age, midlife, and elderly women who had undergone heart surgery. Women aged 40–55 years composed the early middle-age group, women aged 56–65 years composed the midlife age group, and women aged 66+ years were identified as the elderly age group. Affective components of depression were measured by asking participants to respond to three items regarding frequency of sadness, depression, and “the blues.” Affective depression scores were summed and a mean score derived. Mean scores significantly differed by age group (F [2, 152] = 3.05, p =. 05). Older women in the study fared better than their younger counterparts in terms of depression scores after a major cardiac health disruption. Post hoc comparisons indicated that mean scores for the early middle-age participants were significantly higher than for the midlife and older participants. Depression in the context of a cardiac health disruption appears to be linked to the developmental stage of a woman’s life trajectory on which it is superimposed.

Effective Weight Loss for Children: A Meta‐analysis of Intervention Studies 2002–2015

BACKGROUND Investigators have implemented a variety of strategies for managing and treating childhood overweight and obesity over the past decade, yet the high prevalence of childhood overweight or obesity remains. The aim of this meta-analysis was to examine the effectiveness of childhood overweight or obesity interventions addressing weight loss from 2002-September 2015. METHODS The population focused on in this review were children who were overweight. The treatment group interventions focused on weight loss for overweight children, and included dietary, physical activity, life style changes, or a combination of treatments. Control groups received no treatment other than what they would usually receive in their normal daily lives including standard healthcare assessments. Outcomes for the studies were focused on whether the overweight children in the treatment groups lost weight. RESULTS The criteria for the meta-analysis were met by 16 intervention studies, with a total of 19 outcomes reported within those studies. Two thousand, three hundred and seventeen participants ranged from 6 to 15 years of age with a mean age of 12 years or less. The majority of the 16 studies were conducted outside the United States (n = 13), with half reporting data on the cost of running the programming (n = 8) and were overwhelmingly conducted by interdisciplinary teams without nurses as members of the team (n = 13). The M effect was g = .732, p < .001 with a 95% confidence interval of 0.351 to 1.113, with quality scores ranging from 20 to 29 out of a possible 41. The heterogeneity analyses overall Q score was 378, an I-squared of 95, with a fail-safe N of 415. LINKING EVIDENCE TO ACTION Diverse interventions included in this meta-analysis had a significant positive effect on weight loss in overweight children. Future research needs to focus on the role of the nurse in ensuring development and translation of the effective interventions in real world settings, at a scale that would move beyond small segments of the affected populations of overweight children.

Enhancing the Participation of African Americans in Health-Related Genetic Research: Findings of a Collaborative Academic and Community-Based Research Study

The involvement of African Americans in research has long been expressed as a concern by the scientific community. While efforts have been undertaken to identify factors inhibiting the participation of African Americans in health-related research, few efforts have been undertaken to have highlight factors associated with their engagement of health-related research. An exploratory study of factors presumed to be associated with participation in health-related research was conducted among a nonprobability sample of African Americans (n = 212) from a large urban community in the Midwest. The study was guided by a framework that hypothesized the influence of knowledge, beliefs, and perceptions about genetics and the involvement of providers in decision-making on willingness to participate in health-related genetic research. The results revealed that knowledge, beliefs, and perceptions about genetics and the involvement of providers were associated with willingness to engage in health-related genetic research (P < .05). The most interesting, however, was that 88.7% of the participants who had not previously been involved in a health-related study who expressed a willingness to participate reported that they “had never been asked.” Study findings suggest the need for research that further examines factors associated with the involvement of African Americans in health-related genetic research.

Predictors of Grief in Bereaved Family Caregivers of Person's With Alzheimer's Disease: A Prospective Study

The purpose of this prospective study was to identify factors in 66 spouses and adult child caregivers of persons with Alzheimers disease prior to the death that predicted higher levels of grief in bereavement. A hierarchical regression model was tested. Predeath grief, dysfunctional coping, depression, social support, and decreased positive states of mind explained 54.7% of the variance in postdeath grief. Factors that contributed significantly to postdeath grief included predeath grief and depression. Results from this study indicate that risk factors for postdeath grief can be predicted prior to the death.