Hospice Bereavement Services Research Articles

LONG-TERM GENDERED PATHWAYS OF RELIGIOUS INVOLVEMENT POST WIDOWHOOD

Abstract Widowhood is associated with decreased emotional well-being, particularly increased depression. Prior research suggests that religiosity may help improve mental health among widowed individuals. However, longitudinal studies exploring the role of religiosity on emotional well-being among widowed older adults is lacking, as are studies which examine different dimensions of religiosity. This longitudinal study analyzed data from the 2006-2018 waves of the nationally representative Health and Retirement Study (HRS). Ordinary least squares (OLS) regression analysis was used to examine the relationship between widowhood and depression as well as the role of religiosity as a moderator of this association. Analysis was stratified by gender to further explore these interactions. Results show that men and women show similar levels of depression at widowhood, but men are far less likely to be depressed prior to widowhood. Women also show a better recovery pattern over time post-widowhood. Furthermore, religiosity (particularly attending church) is an effective way of coping with widowhood and mitigating depression for both genders. However, men are significantly less religious than women. This study highlights the long-term effects of widowhood on depressive symptomology among older adults. Practical implications of this study include intervention development around increased screening and treatment for depression for widowed older adults (in particular, for widowers) as well as connecting this vulnerable population with resources. These findings may also inform program outreach (such as hospice bereavement services) that aim to facilitate healthy grieving among widowed older adults.

Bereavement Support Services in a National Sample of Hospices: A Content Analysis

Although the Medicare Hospice Benefit mandates that hospices provide bereavement services to families for 1 year following death, it does not stipulate what services should be offered or how. Thus, this study aimed to explore the range of hospice bereavement services. This study stems from Cagle et al.’s (2020) prior study surveying 600 randomly selected agencies, stratified by state and profit status. Most participants (N = 76) worked as clinical supervisors or directors of patient services (41.6%) for medium-sized (53.2%), for-profit hospices (50.6%). Responses to “What types of bereavement support does your hospice provide to families?” were content analyzed. Analyst triangulation and peer debriefing enhanced trustworthiness. Four domains emerged: timing of support, providers of support, targets of support, and formats of support. Each domain reflected substantial variability. All hospices offered postdeath bereavement support. A minority described offering predeath support, often through bereavement risk assessment and supportive services targeting those at risk. Providers frequently included trained bereavement counselors, social workers, and chaplains. Less often, hospices leveraged familiar members of the decedents’ care team to encourage family participation. Although bereavement services predominantly targeted surviving adult family members of deceased hospice patients, services tailored to children and hospice-unaffiliated community members also emerged. The format of bereavement services demonstrated the widest variability. Commonly reported formats included written materials, support groups, and phone calls. Most hospices employed multiple formats. Although findings are consistent with prior research, the variability in each domain complicates rigorous investigation of which aspects offer the greatest benefit to bereaved family members.

"I Feel All Alone Out Here": Analysis of Audio Diaries of Bereaved Hospice Family Caregivers During the COVID-19 Pandemic.

The COVID-19 pandemic has dramatically changed social life. This secondary qualitative analysis aimed to better understand the impact of the pandemic on bereaved hospice family caregivers' experiences of social connection and isolation in a time of social distancing and general anxiety. Six caregivers in 3 states recorded audio diaries (N = 59) between March 13 and May 15, 2020. Caregivers were, on average, 56.80 years old (SD, 14.22; range, 32-67 years old) and consisted of spouses (n = 2), adult children (n = 3), and a sibling (n = 1). Using NVIVO 12, caregiver diaries were coded for (1) “social connection” (n = 23), defined as being able to access or seeking informal or formal social support networks; (2) “isolation” (n = 17), defined as being unable or reluctant to access informal or formal social support networks, or feeling alone; and (3) “bereavement processes” (n = 147), informed by the dual process model of bereavement (restoration and loss-oriented stressors). Content analysis revealed that caregivers were able to connect with others despite physical distancing expectations, expressed loneliness and grief while in isolation, and described moving on in the face of uncertainty. Findings provide insight into how caregivers experienced bereavement during the initial period of the pandemic and highlight implications for hospice bereavement services.

Hospice Bereavement Service Delivery to Family Members and Friends With Bereavement-Related Mental Health Symptoms.

A sizable minority of those who lose a loved one in hospice will experience symptoms of bereavement-related mental health disorders. Though hospices offer services to bereaved informal caregivers (family members or friends) of patients, little is known about services offered or interest in them. Therefore, we sought to assess services offered by hospice staff and interest expressed by bereaved informal caregivers with symptoms of depression, anxiety, or complicated grief (CG). De-identified electronic bereavement care charts of 3561 informal caregivers who lost someone in a large urban metropolitan hospice from October 1, 2015, to June 30, 2016, were reviewed. Of bereaved informal caregivers in the sample, 9.4% (n = 333) were positive for symptoms of depression, anxiety, or CG. The symptom-positive family members/friends were more likely than other family members/friends to be offered mailings, one-to-one counseling, telephone calls, and reference material. However, interest in most services by symptom-positive caregivers was low, with only 6% interested in one-to-one counseling and 7% interested in outside referral. The findings suggest that hospices offer a range of services to family members or friends with symptoms of anxiety, depression, and CG, but that there can be a gap between what is offered and in the interest levels of the bereaved. Engagement with symptomatic family members and friends could be enhanced in future work.

Access to bereavement services in hospice.

Hospice bereavement services, though often overlooked in hospice research, are an important area of study due not only to the potential value of bereavement support but also the emphasis placed on such services by the Centers for Medicare and Medicaid Services. Moreover, access to these services is seldom understood or researched. Therefore, using the patient public use file of the 2007 National Home and Hospice Care Survey, we explored the relationships between patient, informal caregiver, and agency characteristics as well as discharges from hospice to gain perspective into bereavement service access to informal caregivers. Findings suggested that death at discharge from hospice may be an important moderator variable between access to hospice bereavement support and many other factors. However, even under controls for death at discharge, two agency characteristics remain significantly associated with access. Bereavement access tends to be more likely in agencies that provide only hospice care as opposed to other services, and in micropolitan agencies. Furthermore, death at discharge is less likely among African Americans, suggesting the value of enhanced culturally-appropriate and more targeted hospice care and hospice bereavement support for this population. Future research should explore the strategies used to effectively deliver bereavement services and how these strategies may benefit from targeted and culturally sensitive approaches.

Bereavement among Hospice Caregivers of Cancer Patients One Year following Loss: Predictors of Grief, Complicated Grief, and Symptoms of Depression

Informal caregivers are an integral part of end-of-life care for hospice patients with cancer. Although adjustment following loss is highly individual, many caregivers have significant psychological distress after the death of a loved one. This study investigated risk factors that may predict psychological distress, which could aid hospice bereavement departments in targeting bereavement services. Demographic characteristics, patient impairment, caregiver baseline symptoms of depression, and caregiver resources were assessed among 188 cancer patient-caregiver dyads. Regression analyses identified predictors of symptoms of depression, grief, and complicated grief one year following loss. Over 50% of bereaved caregivers had clinically significant depressive symptoms one year after death of their relative. Caregivers with fewer years of education and more baseline symptoms of depression had significantly worse grief, complicated grief, and depression. Younger patient age was a significant predictor of poorer outcomes for grief and complicated grief; and less patient impairment was a significant predictor of more post-loss symptoms of depression. Lower social support satisfaction was correlated with worse grief and complicated grief but was not a significant multivariate predictor of poorer outcomes. Despite having access to hospice bereavement services, many former caregivers had high psychological distress one year following loss. Bereavement departments could consider utilizing readily available risk factors to target services to former caregivers who may benefit from bereavement services. Bereavement departments might also consider including brief, standardized screenings of caregiver depression in initial risk assessments. Future studies should investigate evidence-based approaches for assessment and interventions among highly distressed former hospice caregivers.

‘I don’t have to explain myself': using open groups to mobilise peer support in palliative care

ModelOver the last 2 years members of a hospice social work, bereavement and chaplaincy service have piloted the use of semi-structured, facilitated open groups for day hospice patients, carers and...

Three years of living with grief – reviewing a series of meetings for people who have been bereaved

IntroductionHighland Hospice Bereavement Support Service offers varied support to individuals and families. For the past 3 years, in order to widen the support options available and recognising people's differing needs,...

36 Promoting Excellence in the Training of bereavement Volunteers

Introduction: As part of a developing hospice bereavement service, in line with National Institute for Health and Clinical Excellence (NICE, 2004) guidance, volunteers were needed to offer support to bereaved people referred to the service who did not need counselling. Aims: Our aim was to offer a comprehensive training course for volunteers who wanted to be bereavement support workers …

Case study research methods in end‐of‐life care: reflections on three studies

This paper is an evaluation of the use of case study methods, drawing on three research studies conducted by the authors in end-of-life care and bereavement. Case study methods have their origins in social anthropology and draw on the principles of naturalistic inquiry. They have been used in a number of disciplines, including qualitative sociology, management science, education and organizational psychology for the understanding and evaluation of complex social systems. They are an appropriate research design for examining processes and outcomes in dynamic healthcare organizations, where it is important to obtain multiple perspectives. We explore issues in case study research design, recruitment and data collection drawing on three studies conducted between 2000 and 2005 in six community hospitals, five adult hospice bereavement services and eight childhood bereavement services in the United Kingdom. Quantitative and qualitative data were collected using interviews, focus groups, observations, documentary analysis, standardized measures and questionnaires. The process of case study design is described, including building upon a clear rationale for the selection of cases, collection of data, preparation of single case reports, cross-case analysis and interpretation. In a critical discussion of recruitment, we recommend identification of a key contact person at each site to facilitate access and minimize misunderstanding, disruption to clinical services and 'gate-keeping'. Three principal methods of data collection: interviews, observation and documentary data analysis form the foundation of the rich data set necessary to explore cases in their situational contexts. Case study methods may be empowering for participants because they value their experiences and reveal how their work contributes to teamwork within organizations. They can therefore be both affirming and challenging, as they may expose both conflicts and tensions.

Adult bereavement in five English hospices: types of support

In-depth organisational case studies of five English hospices. Thematic analysis of qualitative interviews and focus groups and scrutiny of documentary material provided by the hospice bereavement services. All of the hospices ran events where bereaved people met with other bereaved people who had been in contact with the hospice. They all offered some form of more intensive one-to-one support, spiritual support, and ran remembrance events. Three types of one-to-one support were offered: counselling; befriending; support from paid bereavement staff. Ongoing telephone support from trained bereavement volunteers appeared to be an acceptable and cost-effective way of providing low intensity bereavement support. Running social bereavement support groups is difficult and resource intensive. "Drop-in" events appear to perform a useful role for both bereaved people and bereavement services. There seemed to be no readily available sources of support for people with particularly complex bereavement problems. All of the hospices were offering appropriate types of bereavement support that clearly met Components 1 and 2 of bereavement support in the NICE guidance. In the absence of any agreement about "best practice" for adult bereavement support services it is the integration of bereavement support as a central aspect of hospice activity that is most likely to improve bereavement support for adults in the future.

Adult bereavement in five English hospices: Participants, organisations and pre-bereavement support

in-depth organisational case studies of five English hospice bereavement services. thematic analysis of qualitative interviews and focus groups and scrutiny of documentary material provided by the hospice bereavement services. despite the differences in philosophies and activities among the hospices a common pattern of support were apparent. All made contact with the bereaved relatives or main carers shortly after the patient's death, all provided information about practical and emotional aspects of bereavement and a mixture of social and therapeutic support. None of the hospices used formal "risk assessment", but at all sites there were processes in place to identify people who might benefit from bereavement support. Pre-bereavement support and continuity between this and bereavement support were important aspects. the case studies allowed analysis of individual characteristics and comparison between services. The high response rates suggest that the questionnaires used were acceptable to bereaved people. A clear and explicit rationale for bereavement support activities is a pre-requisite for the development of a cohesive and integrated programme of support to help resolve difficult decisions about individual clients. Pre-bereavement support by hospice staff positively contributes to the person's experience of bereavement. Hospices should address the issue of providing the appropriate level of bereavement support.

Survey of UK hospice and specialist palliative care adult bereavement services

Postal survey of UK hospices and specialist palliative care services providing adult bereavement support. Descriptive statistics and content analysis of free text replies. Three hundred services were identified, with 248 valid responses (83%). Of these, 198 (80%) were in England and 180 (73%) were associated with inpatient units. Most had been in existence for at least 10 years. Paid staff were used by 219 services (88%) and volunteers were involved in 168 services (68%). A small minority did not provide supervision for their bereavement staff. A quarter of services had insufficient staff. The most common activities were individual support, telephone support, written information, memorialization events and group support. Ninety-five services (43%) formally assessed the need for individual support. One hundred and fourteen services (51%) had no formal mechanisms for bereaved people to provide feedback about such support. Formal audit and evaluation of bereavement services was uncommon. The main elements of bereavement support can be identified but their combination varies. Assessment of people for individual support varies and the small size of many services may inhibit the effective delivery of support. Audit and evaluation of bereavement support may need to be developed.

A National Survey of Hospice Bereavement Services

Introduction: Historically, bereavement services have been viewed as the “poor stepchild” within hospice programs. In 1986, a survey was conducted of hospices to examine the nature and function of hospice bereavement services. This article presents the results of a similar survey that was conducted in 2002. The aim of this study was to provide updated information on several aspects of hospice bereavement services including staffing, training, services provided, issues, and obstacles. Methods: A self-administered questionnaire, with items adapted from the 1986 study, was mailed to a random sample of 450 Provider Members of the National Hospice and Palliative Care Organization (NHPCO). The 23-item questionnaire took approximately 10 minutes to complete. There was a 58% return ( n = 260) of the questionnaires. Results: Hospices employed fewer bereavement personnel who served more bereaved individuals than compared to hospices in the 1986 study. Major obstacles were lack of time and too few bereavement staff. Bereavement programs tended to focus on less time intensive services such as mailings of letters and literature on grief versus phone calls and home visits. Bereavement staff expressed a desire to provide more groups and educational programs, as well as make more home visits, if they had more resources. Conclusions: Hospices are faced with difficult choices in an era of increased competition between hospices, insufficient reimbursement, and increased demands to document the effectiveness of services. Against this background, hospice bereavement services will continue to compete for attention and resources with other components of hospice programs.

Hospice Care and the Bereavement Process in Two Countries: Experience from the United States and the Netherlands

The authors examine the bereavement process within hospice programs in the United States and in the Netherlands. Topics covered include brief histories of hospice within each country, circumstances that constrain bereavement outcomes research, approaches to hospice bereavement services in each country including bereavement program protocols developed by the National Hospice Organization for programs in the United States, issues of bereavement care and physician-assisted suicide, and an overall comparison of hospice bereavement services in each country.

Bereavement services: practice and problems.

Hospice bereavement services vary widely and are often loosely defined. This paper describes the results of a survey on the form and function of hospice bereavement services completed by NHO Provider Member hospices. It explores issues related to staffing, training, size, services provided, and service priorities. Additionally, data collection and research, referrals, funding, risk assessment, obstacles programs face and the limitations that are inherent in hospice structures are examined. These important elements are presented along with a discussion of critical issues and recommendations for future research and study.

Bridging the Bereavement Gap: A Manual for the Preparation and Programming of Hospice Bereavement Services. Donna O’Toole

Bridging the Bereavement Gap: A Manual for the Preparation and Programming of Hospice Bereavement Services. Donna O’Toole

A Comprehensive Bereavement Program

This case study illustrates how one woman was able to take advantage of a variety of hospice bereavement services. In addition to attending monthly social support group meetings and six therapeutic support group sessions, Lillian received 12 home visits or approximately 18 hours of individual support. Not all hospice survivors became so intensely involved in the follow-up services programs offered by Hilltop Hospice. During the five-year period, 1980-1984, approximately 80% of the hospice survivors, or 200 clients, received some form of direct bereavement services; most of the others were provided with supportive correspondence throughout their first year of bereavement. Although approximately 10% of the hospice survivors became involved in the social and the therapeutic support groups, in addition to receiving individual support, most survivors found the individual support services to be sufficient. However, in hospice programs where resources are limited and not all survivors can be assigned a volunteer, support groups can be designed to compensate for a lack of available volunteers. A comprehensive hospice bereavement program takes into account not only the varying resources of the hospice but the individual characteristics of survivors as well. Because clients' grief experiences differ, as well as their personalities, coping styles, and circumstances, a hospice should be prepared to offer a variety of bereavement services. In addition, surviving family members may be more likely to accept follow-up support from the hospice team if they can choose a particular service to meet their individual needs.(ABSTRACT TRUNCATED AT 250 WORDS)

Book Review: “Bridging the Bereavement Gap: A Manual for the Preparation and Programming of Hospice Bereavement Services”

Book Review: “Bridging the Bereavement Gap: A Manual for the Preparation and Programming of Hospice Bereavement Services”

Hospice bereavement services: creating networks of support.

Hospice bereavement services: creating networks of support.