Sharon Wallace Williams

An Exploratory Study of Spiritual Care at the End of Life

PURPOSE Although spiritual care is a core element of palliative care, it remains unclear how this care is perceived and delivered at the end of life. We explored how clinicians and other health care workers understand and view spiritual care provided to dying patients and their family members. METHODS Our study was based on qualitative research using key informant interviews and editing analysis with 12 clinicians and other health care workers nominated as spiritual caregivers by dying patients and their family members. RESULTS Being present was a predominant theme, marked by physical proximity and intentionality, or the deliberate ideation and purposeful action of providing care that went beyond medical treatment. Opening eyes was the process by which caregivers became aware of their patient’s life course and the individualized experience of their patient’s current illness. Participants also described another course of action, which we termed cocreating, that was a mutual and fluid activity between patients, family members, and caregivers. Cocreating began with an affirmation of the patient’s life experience and led to the generation of a wholistic care plan that focused on maintaining the patient’s humanity and dignity. Time was both a facilitator and inhibitor of effective spiritual care. CONCLUSIONS Clinicians and other health care workers consider spiritual care at the end of life as a series of highly fluid interpersonal processes in the context of mutually recognized human values and experiences, rather than a set of prescribed and proscribed roles.

Physician Communication with Family Caregivers of Long‐Term Care Residents at the End of Life

OBJECTIVES: To assess family perceptions of communication between physicians and family caregivers of individuals who spent their last month of life in long‐term care (LTC) and to identify associations between characteristics of the family caregiver, LTC resident, facility, and physician care with these perceptions.

The contexts of experiencing emotional distress among family caregivers to elderly African Americans

Using a contextual approach, this study examined predictors of emotional distress among 187 African American caregivers to dependent elders. The results show that almost 20% of the caregivers were emotionally distressed which is indicated by having a t-score of 63 or more on two of the nine sub-scales of the Brief Symptom Inventory (BSI) or by having a t-score of 63 or more on the Global Severity Index (a global measure of the BSI) (Derogatis & Spencer, 1982). The results also show that caregivers who were distressed received less social support, were in poor physical health, and experienced more caregiving role strain than caregivers who were not distressed.

Recruitment and retention strategies for longitudinal African American caregiving research: the Family Caregiving Project.

Objectives: This article provides a detailed discussion, guided by a culturally competent approach, on recruitment and retention strategies used to study caregiving to older dependent elders in African American families. Methods: The study (lasting from 1995 through 2000) included collecting three waves of data, 9 months apart, among 202 caregiving units (containing a maximum of three caregivers per unit). Results: Four key strategies were identified as useful in recruiting and retaining the sample: (a) assigning the same interviewers to communicate with and interview study participants for each wave of data collection, (b) ensuring that all interviewers are knowledgeable of possible family dynamics and social issues within the African American community (e.g., access to health care, income and education issues, and discrimination), (c) providing a mechanism by way of a toll-free number for all participants to contact the project staff at the participant’s convenience, and (d) allowing flexibility in scheduling and rescheduling interviews at the participant’s convenience. Discussion: Researchers need to acquire knowledge and develop skills that will foster culturally competent approaches when studying diverse cultural groups, which involves incorporating the beliefs, values, and attitudes of a cultural group in every phase of the research project, from conceptualization to interpretation of findings. Additionally, a genuine interest in, knowledge of, and respect for the population are necessary to help improve participant involvement in longitudinal research among African American caregivers.

Family Caregiver Involvement for Long-Term Care Residents at the End of Life

OBJECTIVES To examine family caregiver involvement for long-term care (LTC) residents during the last month of life. Researchers examined direct (personal care and meals) and indirect (management and monitoring) types of caregiver involvement and the relationship between the type of involvement and predisposing, enabling, and need characteristics. Researchers also examined whether the frequency of involvement changed during the end-of-life (EOL) period. METHOD Researchers used an expanded version of Andersens Behavioral Model to conceptualize predictors of family involvement for 438 residents in 125 residential care/assisted living and nursing home settings. Bivariate and multivariate analyses examined relationships among variables. RESULTS More than one-half of family caregivers monitored, managed care and assisted with meals, and 40% assisted with personal care tasks. The enabling characteristic of days visited and the need characteristic of caregiver role strain were related to each of the 4 types of involvement. However, the other correlates were distinct to the type of involvement. DISCUSSION Families are involved in EOL care in LTC settings. Higher role strain is related to more involvement in each of the 4 types of involvement, suggesting that whether involvement is by desire, perceived need, or both, there is cause to more critically examine the family caregivers desired role and need for support.

An Exploratory Study of Advance Care Planning in Seriously Ill African-American Elders

INTRODUCTION The process of advance care planning (ACP) is often difficult to initiate and complete in minority populations, and African Americans are less likely to participate in ACP than non-Hispanic whites. We explored the perceptions of ACP among seriously ill African-American older adults. METHOD Qualitative semistructured interviews and editing analysis of 10 community-dwelling African-American elders in North Carolina. RESULTS Three major themes were identified. First, participants had little to no familiarity with ACP; none reported that they participated in any substantive discussions regarding ACP. Inconsistent sources of healthcare information, in which there was little congruence in the information given and discordant of sources of information, were a second theme. Finally, participants denoted a deferred autonomy, in which they postponed involvement in future care decision-making but viewed themselves as active in their day-to-day living. CONCLUSION Seriously ill African-American elders report both individual-level and health systems-level barriers to ACP. Efforts to improve ACP need to take into account the differences between the current, autonomy-based model of ACP within biomedicine and the values of minority older adults approaching the end of life.

Patient preferences for stroke rehabilitation

Abstract Purpose: Early aggressive rehabilitation therapies maximize functional recovery. We examined patient-reported preferences for their initial rehabilitation therapy setting during their acute stroke hospitalization and whether there was an association between their preferences and their actual discharge destination. Method: Eligible stroke patients were surveyed during their acute hospital stay at either a primary stroke center or a rural community hospital in North Carolina. Patients were questioned about their knowledge of inpatient rehabilitation, preferences for the initial rehabilitation therapy setting and intensity, and how far from home they were willing to travel to receive therapies. The primary outcome was their actual discharge destination. The exposure variable was their preference for initial rehabilitation therapy setting. Logistic regression models assessed the relationship between the outcome and exposure while controlling for other variables of interest. Results: Among 53 patients surveyed in the study, 85% preferred to be discharged home. After controlling for other factors, discharge to the actual destination of home was associated with a preference for an initial rehabilitation therapy setting of home (OR, 7.19; 95% CI, 1.10-46.89). Conclusion: Patient preference for the initial rehabilitation therapy setting is home. Providers should inquire about patient preference and provide information about treatment options to help inform decision making.

A contextual conceptualization on transitions of care for older persons: Shaping the direction of care

A contextual conceptualization is discussed in this chapter to help frame and direct the discussion on health care transitions for older adults. This approach emphasizes individual characteristics of older adults (e.g., race, ethnicity, gender, and health conditions), the place in which they live (e.g., urban, rural), their cultural background, and the societal structures (e.g., economic, religious, and political) that influence their everyday life. This contextual conceptualization also incorporates factors that exist at multiple levels, from the individual to the health care system. These factors are critical and must be adequately acknowledged when addressing the health care needs of older persons. Discussion is provided on the importance of looking at context in the health of older people and how imperative it is to use interdisciplinary, community-based approaches to address the health among them. Successfully meeting the challenges and demands of an aging population navigating through the health care system requires that the contextual world of older adults is taken into consideration.

Research partnership with underserved African-American communities to improve the health of older persons with disability: a pilot qualitative study

Background and aims: Underserved ethnic minorities are often under-represented in clinical investigations, often in the context of poor relationships between academic institutions and their minority communities. The aim of this study was to investigate an African-American community’s perceptions about the barriers that hinder participation in research studies and, more broadly, on the status of institution/community relationships. Methods: We conducted a pilot qualitative study, based on semi-structured interviews of leaders of African-American communities in Winston-Salem, North Carolina. Relevant themes were abstracted from the interviews by a standardized iterative process. Results: Interviewees identified barriers to participation of African-Americans in research, and suggested that existing barriers may be overcome with an innovative model of a community/institution relationship, which would include open communication and cooperation, mutually beneficial programs, holistic approaches to health and disease, participatory and balanced partnerships with communities, and the establishment of multiethnic advisory boards. Conclusions: This study suggests strategies that public health researchers should consider to establish effective institution/community relationships, in order to enhance participation of underserved ethnic minorities in research studies, and to improve the health status of their most disabled and demanding seniors.

Predictors of Preference for Hospice Care Among Diverse Older Adults

The purpose of this study was to identify predictors of preference for hospice care and explore whether the effect of these predictors on preference for hospice care were moderated by race. Methods: An analysis of the North Carolina AARP End of Life Survey (N = 3035) was conducted using multinomial logistic modeling to identify predictors of preference for hospice care. Response options included yes, no, or don’t know. Results: Fewer black respondents reported a preference for hospice (63.8% vs 79.2% for white respondents, P < .001). While the proportion of black and white respondents expressing a clear preference against hospice was nearly equal (4.5% and 4.0%, respectively), black individuals were nearly twice as likely to report a preference of “don’t know” (31.5% vs 16.8%). Gender, race, age, income, knowledge of Medicare coverage of hospice, presence of an advance directive, end-of-life care concerns, and religiosity/spirituality predicted hospice care preference. Religiosity/spirituality however, was moderated by race. Race interacted with religiosity/spirituality in predicting hospice care preference such that religiosity/spirituality promoted hospice care preference among White respondents, but not black respondents. Conclusions: Uncertainties about hospice among African Americans may contribute to disparities in utilization. Efforts to improve access to hospice should consider pre-existing preferences for end-of-life care and account for the complex demographic, social, and cultural factors that help shape these preferences.