Identifying Key Domains and Implementation Challenges for a Live Discharge From Hospice Protocol.

Background: Hospice agencies lack an explicit live discharge process to guide practitioners in transitioning these patients and their primary caregivers (PCGs) out of hospice care. Based on previous research and input from an advisory committee, a live discharge protocol (LDP) was drafted with .three general areas of assessment: 1) concrete services; 2) psychosocial assessment; and 3) 30-day post discharge follow-up phone call. This study sought to gather perspectives from hospice social workers on the proposed assessment components and other needs in implementing a LDP. Methods: Purposive, convenience sampling occurred over 4 months. Participants were hospice social workers (n = 14) recruited through personal and professional contacts and social media. Four focus groups were conducted via Zoom. Data was analyzed using thematic analysis. Results: Three major themes appeared: 1) benefits and challenges of having a structured discharge protocol (n = 14); 2) need for specific LDP roles across team members (n = 11); and 3) education and clear boundaries for both patients/PCGs and professionals (n = 9). Conclusions: All three assessment components of the preliminary LDP were deemed necessary by participants; however, implementation challenges were both unique for each agency and reflective of the broader hospice culture. Further research is needed to measure the impact of the LDP.

Attending to the Psychosocial Needs of Older Hispanic, Black and Non-Hispanic White Women and Their Breast Cancer Screening Behaviors.

BACKGROUND: Cancer risk increases with age. Despite breast cancer screening guidelines, older minorities are less likely to obtain screenings. Many factors influence cancer screening participation, though the literature rarely examines factors influencing cancer screening in older adult minority populations. METHODS: Using 2008 and 2012 waves of data from the Health and Retirement study, we examined and compared the relationships between psychosocial factors and breast screening participation among older African American, Hispanic and non-Hispanic White women. We utilized logistic regression to determine the influence of psychosocial factors (satisfaction with aging, religiosity, perceived control, emotions, purpose in life) in 2008 predicting breast cancer screening participation in 2012, given the increasing importance of understanding health behaviors as predicted by prior circumstances. While controlling for other variables, the major findings demonstrated that the odds of having a mammogram among Hispanics decreased as feelings that 'things were getting worse' with age intensified; and screening was more likely among Hispanic religious women. The odds of obtaining a mammogram increased with increasing purpose in life for Hispanics. CONCLUSIONS AND IMPLICATIONS: These findings suggest the need for comprehensive geriatric assessments to understand the perspectives of older minority women, and provides formative data to inform shared decision-making interventions.

Caregiving for Parents Who Harmed You: A Conceptual Review.

Objectives: This paper aims to provide a conceptual review of prior research on the effect of a history of parental childhood maltreatment on the experiences and outcomes of adult-child caregivers who provide care to their perpetrating parents.Methods: We performed a search using several databases including PsycINFO, ScienceDirect, and Academic Search Premier (EBSCO) for relevant papers and reviewed reference sections of selected papers.Results: Histories of childhood maltreatment are associated with adverse psychological health in adult-child caregivers and reduced frequencies of providing support to their parents. The potential factors affecting the experiences and outcomes of such caregivers include contemporaneous relationships with perpetrating parents; caregivers' sense of choice about providing care; opportunities for posttraumatic growth; and participating in care through the end of life.Conclusions: Caregiving for perpetrating parents can be particularly challenging due to complex, intersecting factors; thus, healthcare practitioners' increased awareness of and knowledge about such caregivers are crucial to provide effective support.Clinical Implications: We highlighted the importance of ensuring caregivers' sense of choice and assessing their posttraumatic growth. In caregiving at the end of life, we noted the importance of using a trauma-informed approach when interacting with caregivers and their family members during illness and bereavement.

COVID-19 Pandemic: Workforce Implications for Gerontological Social Work.

The COVID-19 pandemic has been challenging for people of all ages but particularly devastating to adults 65 and older, which has highlighted the critical need for ensuring that all social workers gain the knowledge and skills necessary to work with this population. While there is a critical shortage of gerontological social workers and we must continue to increase that number, we cannot wait for this to occur. In this commentary, the authors call for infusing the current social work curricula with aging content; providing current social workers with trainings on aging practice; and all social work practitioners, faculty, and researchers to address four specific areas that have gained prominence due to the impact of COVID-19: ageism, loneliness and social isolation, technology, and interprofessional practice, in their respective areas.

Training the Next Generation of Gerontological Social Worker Scholars.

The rapid growth of the aging population in the United States has produced concern over whether the social work profession will be able to meet the needs of elders and their caregivers. Currently, a shortage of gerontological social workers trained specifically to work with this population exists, and based on projections, this shortage will only become more critical over the next few decades. In order to address this shortage, one approach has been adopted that seeks to increase the number of gerontological social work faculty, who can then encourage Bachelor and Master of Social Work students to consider working with older adults, and prepare them with the knowledge and skills necessary for doing so. In this commentary, we describe a program that adopts this approach and the measures used to determine its success, and conclude with a brief description of three articles included in this issue of the JGSW that analyze and report the results of these measures.

Walking in Two Worlds: Hmong End of Life Beliefs & Rituals.

For over 40 years, the Hmong have sought refuge in the United States; however, many Hmong elders continue to honor healthcare and end-of-life beliefs and rituals that they practiced in their home country. With little knowledge by the general public and healthcare systems about these beliefs and rituals, healthcare professionals may struggle to provide the Hmong community with culturally-sensitive care. This study sought to address this gap by conducting in-depth face-to-face interviews with 12 Animist and 8Christian Hmong elders born in Southeast Asia, who now reside in the United States. Results provided insights regarding the heterogeneity among these Hmong elders concerning their end-of-life beliefs and rituals. Both Animist and Christian respondents believed family should provide care at end of life. Animist Hmong elders reported the importance of Shamanistic rituals such as soul calling or spiritual offering while Christian Hmong elders believed in the power of prayers. Healthcare providers need to assess Hmong elders' preferences for care at end of life, be open to the inclusion of traditional healers in their care and/or decision-making, and understand preferences of family and community members' involvement in care at the end of life.

Correction: An International Consensus Definition of the Wish to Hasten Death and Its Related Factors.

[This corrects the article DOI: 10.1371/journal.pone.0146184.].

An International Consensus Definition of the Wish to Hasten Death and Its Related Factors.

BACKGROUND: The desire for hastened death or wish to hasten death (WTHD) that is experienced by some patients with advanced illness is a complex phenomenon for which no widely accepted definition exists. This lack of a common conceptualization hinders understanding and cooperation between clinicians and researchers. The aim of this study was to develop an internationally agreed definition of the WTHD. METHODS: Following an exhaustive literature review, a modified nominal group process and an international, modified Delphi process were carried out. The nominal group served to produce a preliminary definition that was then subjected to a Delphi process in which 24 experts from 19 institutions from Europe, Canada and the USA participated. Delphi responses and comments were analysed using a pre-established strategy. FINDINGS: All 24 experts completed the three rounds of the Delphi process, and all the proposed statements achieved at least 79% agreement. Key concepts in the final definition include the WTHD as a reaction to suffering, the fact that such a wish is not always expressed spontaneously, and the need to distinguish the WTHD from the acceptance of impending death or from a wish to die naturally, although preferably soon. The proposed definition also makes reference to possible factors related to the WTHD. CONCLUSIONS: This international consensus definition of the WTHD should make it easier for clinicians and researchers to share their knowledge. This would foster an improved understanding of the phenomenon and help in developing strategies for early therapeutic intervention.

The prevalence of older couples with ADL limitations and factors associated with ADL help receipt.

Using the Andersen-Newman model, we investigated the prevalence of activities of daily living (ADLs) limitations in married couples, and couple characteristics associated with ADL help-receipt. In this sample of 3,235 couples age 65+ in the 2004 Health and Retirement Study, 74.3%, 22.1%, and 3.6% were couples in which neither partner, one partner, or both partners had limitations, respectively. Logistic regression results indicate that help-receipt was associated with certain health needs in the couple, but not with their predisposing characteristics or enabling resources. Social workers could target couples most in need of assistance by assessing both partners' health problems.

Terminally ill African American elders' access to and use of hospice care.

The underuse of hospice care by terminally ill African American elders suggests they are suffering when hospice care could offer quality end of life care. Guided by the Behavioral Model for Vulnerable Populations, this study sought understanding of structural barriers faced when seeking access to hospice care and reasons for using it when access is possible. Data was collected through interviews with 28 African American hospice patients. Themes from directed content analysis provide insights into strategies used to overcome access barriers posed by income, health insurance and administrative procedure, as well as the role religion, family, information and health beliefs played in using it. Distributing educational materials and addressing spiritual/religious concerns in choosing hospice care are key in promoting African Americans' use of hospice care.

Terminally ill elders' anticipation of support in dying and in death.

This study explored terminally ill elders' anticipation of future support, which may be particularly important due to their vulnerable state and resulting support needs. Qualitative data was gathered from face-to-face interviews with 100 elders receiving hospice care; 85 of whom discussed anticipating future support. Content analysis revealed that anticipating support was based on current experiences of received support and that the definition of future extended beyond death for some who anticipated surviving loved ones receiving grief support. Not all anticipation of support evoked positive feelings. Some respondents anticipated receiving unhelpful support or felt guilty about anticipating support from overburdened caregivers. Implications are discussed regarding the role of social workers in working with caregivers to insure that the terminally ill elders they care for can anticipate future support in their dying process and after death.

Cancer information sources used by patients to inform and influence treatment decisions.

Previous research has indicated that treatment staff often underestimate the informational needs of cancer patients. In this study, the authors determined the total number of information sources obtained and used to influence treatment decisions, and the clinical and demographic factors associated with the use of specific sources of information in cancer patients. Participants were identified by the statewide cancer registry and diagnosed in 2004 with breast, colorectal, lung, or prostate cancer. A self-administered mailed questionnaire elicited cancer treatments, demographics, and information sources used to make treatment decisions. Of those surveyed, 1,784 (66%) participated and responded to all questions regarding information use. Over 69% of study participants reported obtaining information from a source other than the treatment staff. Significant predictors of using additional information sources included younger age, higher income, higher education, complementary and alternative medicine (CAM) use, and reporting shared decision making (all p values <.01). Participants with a college degree were more likely to use the Internet (OR 3.7; 95% CI 1.5-9.0) and scientific research reports (OR 3.3; 95% CI 1.6-6.9) to influence treatment decisions compared with those without a high school degree. Support group use to influence treatment decisions was not associated with socioeconomic variables but did vary by cancer type and CAM use. The sources of information study participants obtained and used to influence treatment decisions varied strongly by socioeconomic and demographic variables. These findings provide a deeper understanding of the information needs of cancer patients and have implications for dissemination strategies that can minimize disparities in access to cancer information.

Seeking to bridge two cultures: the Wisconsin Hmong cancer experience.

Compared to white non-Hispanics, Hmong report higher incidence rates of certain cancers and present at an advanced stage. Using a community-based participatory research approach, Hmong leaders partnered with academic researchers to assess the Wisconsin Hmong population's readiness to address cancer. Using the Colorado Tri-Ethnic Center's Community Readiness Assessment, face-to-face interviews were conducted with eight Hmong leaders. The stage of readiness to address cancer was "Vague Awareness". Six thematic areas provided insight into this stage and recommendations for effective intervention. Results emphasize the need for a bridge between Hmong and mainstream communities to provide basic, culturally appropriate education on the US healthcare system and cancer.

Does Gender Moderate Factors Associated with Whether Spouses Are the Sole Providers of IADL Care to Their Partners?

We explored whether gender moderated the influence of other factors on solo spousal caregiving. The subsample (N = 452) from the AHEAD study included elderly care recipients (CRs) receiving IADL assistance and their spouses. Logistic regression modeled the likelihood of solo spousal IADL care. Gender moderation was tested by product terms between CRs' gender and measures of partners' health, potential helpers, and sociodemographic characteristics. As numbers of CRs' IADLs and couples' proximate daughters increased, wives less often received care solely from their husbands, but husbands' receipt of care from their wives was unaffected. Age differences between spouses and CRs affected solo spousal caregiving to wives and husbands in opposite ways. Regardless of gender, CRs' number of ADL limitations and spouses with IADL or ADL limitations reduced the likelihood of solo spouse care. Identifying circumstances influencing solo spouse caregiving differently among couples with frail wives and husbands facilitates gender sensitive services.

The myriad strategies for seeking control in the dying process.

PURPOSE: This study explored the role control plays in the dying process of terminally ill elders by investigating the aspects of the dying process over which they seek to exercise control, the strategies they use, and whether they desire to exercise more control. DESIGN AND METHODS: In-depth face-to-face interviews were conducted with 84 terminally ill elders receiving hospice care. Directed and conventional content analysis methods were used to identify main themes and patterns. RESULTS: The results revealed that all 84 elders were using at least 1 primary control strategy in their dying process, 83 of whom did so in combination with another primary or compensatory secondary control strategy. Decision making, independence, mental attitude, instrumental activities of daily living, activities of daily living, and relationships were aspects of the dying process over which the respondents sought to exercise control. Over half of the respondents wanted more control; however, they felt their illness prevented it. IMPLICATIONS: The findings highlight the importance of terminally ill elders' having opportunities to exercise control in their dying process. Practitioners need to ensure that these opportunities exist and to be aware that elders are adaptive and use multiple strategies in exercising control.

A community-specific approach to cancer research in Indian country.

BACKGROUND: Health care leaders in a small, rural, American Indian community and university partners used the community-based participatory research (CBPR) method to survey cancer survivors. OBJECTIVES: We sought to provide support for the use of CBPR to generate ideas for how to improve the detection and treatment of cancer in American Indian communities. METHODS: Partners worked together to develop a mail-out survey and send it to the Indian health clinic's patients who had cancer in the past 5 years. The survey sought information on their experiences with cancer screenings, cancer diagnoses, and accessing and receiving cancer treatment. RESULTS: Community leaders identified three priority areas for intervention: (1) high incidence of breast cancer; (2) lack of culturally appropriate cancer education; and (3) need for a more in-depth assessment. CONCLUSIONS: CBPR's partnership principle allowed for results to be viewed within the community's context, availability of community resources, and relevant cultural beliefs and traditions.

Social relationships and their role in the consideration to hasten death.

PURPOSE: This study explored the quality and functioning of terminally ill elders' social relationships and their impact on elders' consideration to hasten death. DESIGN AND METHODS: In-depth, face-to-face interviews were conducted with 96 terminally ill elders. Logistic regression was used to determine whether aspects of social relationships significantly predicted the consideration to hasten death. The qualitative data was content analyzed to identify main themes and patterns. RESULTS: Logistic regression revealed that conflictual social support was a significant predictor of the consideration to hasten death. Qualitative data provided insight into findings that responsibilities to loved ones or direct verbal attempts did not deter elders' consideration to hasten death. IMPLICATIONS: This research highlights the importance of quality social support in elders' consideration to hasten death and exhibits the need for practitioners to assess thoroughly the quality of elder-caregiver relations.

Critical events in the dying process: the potential for physical and psychosocial suffering.

BACKGROUND: Understanding what aspects of the dying process motivate terminally ill individuals to consider hastening their death, can lead to improving end-of-life care. OBJECTIVE: Advance knowledge regarding critical events within the dying process that have the potential to give rise to physical and psychosocial suffering such that an elder wishes for or considers a hastened death. DESIGN AND METHODS: Face-to-face in-depth qualitative interviews conducted with 96 terminally ill elders, 15 of whom discussed an event in their dying process that resulted in suffering so great they wished for, or considered, a hastened death. Data were content analyzed to identify and categorize the main themes and patterns involved in these elders' experiences. SETTING: The interviews were conducted on palliative care hospital units, and in outpatient clinics, free standing hospice facilities, and home hospice. RESULTS: Four critical events emerged: perceived insensitive and uncaring communication of a terminal diagnosis; experiencing unbearable physical pain; unacknowledged feelings regarding undergoing chemotherapy or radiation treatment; and dying in a distressing environment. Respondents discussed physical and/or psychosocial suffering that occurred at these events, and the end-of-life care practices that reduced their suffering. CONCLUSION: Awareness of events common to the dying process, the potential physical and psychosocial suffering that may arise at these events, and the end-of-life care practices associated with reducing that suffering can lead to health care professionals being able to take a proactive rather than reactive approach to end-of-life care.