Bereavement Services Research Articles

'Personal experience taught me about grief'.

Dawn Chaplin, pictured, is head of bereavement services at the Heart of England NHS Foundation Trust, vice chair of the Bereavement Services Association and a member of the steering group of the Bereavement Pathways project.

Trauma care - a participant observer study of trauma centers at Delhi, Lucknow and Mumbai.

Trained doctors and para-medical personnel in accident and emergency services are scant in India. Teaching and training in trauma and emergency medical system (EMS) as a specialty accredited by the Medical Council of India is yet to be started as a postgraduate medical education program. The MI and CMO (casualty medical officer) rooms at military and civilian hospitals in India that practice triage, first-aid, medico-legal formalities, reference and organize transport to respective departments leads to undue delays and lack multidisciplinary approach. Comprehensive trauma and emergency infrastructure were created only at a few cities and none in the rural areas of India in last few years. To study the infrastructure, human resource allocation, working, future plans and vision of the established trauma centers at the 3 capital cities of India - Delhi (2 centres), Lucknow and Mumbai. Participant observer structured open ended qualitative research by 7 days direct observation of the facilities and working of above trauma centers. Information on, 1. Infrastructure; space and building, operating, ventilator, and diagnostic and blood bank facilities, finance and costs and pre-hospital care infrastructure, 2. Human resource; consultant and resident doctors, para-medical staff and specialists and 3. Work style; first responder, type of patients undertaken, burn management, surgical management and referral system, follow up patient management, social support, bereavement and postmortem services were recorded on a pre-structured open ended instrument interviewing the officials, staff and by direct observation. Data were compressed, peer-analyzed as for qualitative research and presented in explicit tables. Union and state governments of Delhi, Maharashtra and Uttar Pradesh have spent heavily to create trauma and emergency infrastructure in their capital cities. Mostly general and orthopedics surgeons with their resident staff were managing the facilities. Comprehensively trained accident and emergency (AandE) personnel were not available at any of the centers. Expert management of cardiac peri-arrest arrhythmias, peripheral and microvascular repair were occasionally available. Maxillo-facial, dental and prosthodontic facilities, evenomation grading and treatment of poisoning - anti venom were not integrated. Ventilators, anesthetist, neuro and plastic surgeons were available on call for emergency care at all the 4 centers. Emergency diagnostic radiology (X-ray, CT scan, and ultrasound) and pathology were available at all the 4 centers. On the spot blood bank and component blood therapy was available only at the Delhi centers. Pre-hospital care, though envisioned by the officials, was lacking. Comprehensively trained senior A and E personnel as first responders were unavailable. Double barrier nursing for burn victims was not witnessed. Laparoscopic and fibreoptic endoscopic emergency procedures were also available only at Delhi. Delay in treatment on account of incomplete medico-legal formalities was not seen. Social and legal assistance, bereavement service and cold room for dead body were universally absent. Free treatment at Delhi and partial financial support at Lucknow were available for poor and destitute. Though a late start, evolution of trauma services was observed and huge infrastructure for trauma have come up at Delhi and Lucknow. Postgraduate accreditation in Trauma and EMS and creation of National Injury Control Program must be mandated to improve trauma care in India. Integration of medical, non traumatic surgical and pediatric emergency along with pre-hospital care is recommended.

A comparison of bereavement services provided in hospice and palliative care settings in Australia, the UK and the USA

Bereavement support services are recognised as an integral part of hospices and palliative care services. Exploratory surveys on the nature of such services have been conducted in recent years in several countries, including the USA, UK and Australia. The purpose of this paper is to compare the main findings of these surveys and to offer preliminary suggestions on how to improve this component of care both within and across these three countries. Through this comparison, a number of common aspects of service delivery were highlighted. Common difficulties were also found, including low numbers of paid staff, variations in specialist training, insufficient levels of funding, and the lack of the use of validated bereavement assessment tools. Bereavement support is an important aspect of hospice and palliative care service delivery. In all countries, further research and policy development is required to address the common difficulties.

Piloting a Therapeutic Residential for Children, Young People and Families Bereaved through Suicide in Northern Ireland

Families bereaved by suicide can experience an extremely intense and complicated grieving process. This can be associated with a range of difficulties and can put bereaved family members at risk of a range of problems. In recognition of this, Barnardo's Child Bereavement Service piloted a two-day residential programme (integrating separate therapeutic sessions for children and parents and joint outdoor pursuits). Five families (seven adults and eight children) participated in the pilot residential; of these, six adults and six children also participated in the evaluation. The residential was evaluated using semi-structured interviews with the parents, children and staff. The resultant data were evaluated thematically. Families reported positive outcomes in several domains. Children reported themselves to feel less alone, more confident and happier. Parents found the residential beneficial and reported themselves better able to cope with their own, and their children's, grief. Staff reported the residential to be a positive experience for the families and themselves, and felt privileged to have been involved in the project. This evaluation points to the utility of residential programmes to assist families bereaved by suicide. Implications for practice are discussed.

Effecting positive change with bereaved service users in a hospice setting

User involvement is now an internationally established feature of health and social care, service planning and delivery. This paper discusses the background context of user involvement as a prelude to describing the processes pursued in changing communication systems for bereaved service users. This qualitative study aimed to gain a deeper understanding of service user experiences of an adult bereavement group in a hospice setting in Northern Ireland. The key focus of the study was the development of a bereavement information leaflet. To achieve this, a one-off focus group meeting with seven users who were purposively selected based on their previous experience of bereavement services was held. The findings are presented using a thematic content analysis approach. These illustrate the experiences of service users and their recommendations, which informed the content and language of a new information leaflet. This paper demonstrates how service user participation can inform changes to service delivery in a manner that avoids the potential for consultation fatigue and tokenism.

Depressive Symptoms, Social Network, and Bereavement Service Utilization and Preferences among Spouses of Former Hospice Patients

Bereavement services are an important part of comprehensive end-of-life care with potential to ameliorate physical, psychological, and spiritual distress. We studied bereaved spouses of hospice patients to examine bereavement service utilization, barriers, and preferences regarding content, structure, and delivery of potential bereavement services. We also examined the impact of depressive symptoms and social network. Retrospective cohort study of bereaved spousal caregivers of patients of three hospices in Tampa Bay, Florida. Descriptive and univariate analyses assessed demographics, depressive symptoms, social network, service utilization, barriers, and preferences. Nearly half utilized at least one type of specialized professional bereavement intervention to aid in coping with their loss. The most frequently used services were provided by clergy members and physicians. Primarily attitudinal in nature, barriers included the finding that more than one third felt available services did not fit their needs or interests. Individual and spiritually-based services were highly endorsed, as were services designed to provide tools to reframe the loss and cope with accompanying changes and emotions. Lower social network was associated with higher content preferences for services consistent primarily with restoration-oriented coping. Clinicians and service providers may facilitate coping by routinely screening for depressive symptoms and social network and tailoring interventions to those identified as experiencing elevated distress or lacking social resources. Attitudinal barriers and preferences suggest that even in the service-rich environment of hospice some modification of bereavement services might reach more bereaved spouses. Future studies might address whether preferences lead individuals to services of the greatest benefit.

Bereavement help-seeking following an 'expected' death: a cross-sectional randomised face-to-face population survey

BackgroundThis study examines the prevalence and nature of bereavement help-seeking among the population who experienced an "expected" death in the five years before their survey response. Such whole population data are not limited by identification through previous access to specific services nor practitioners.MethodsIn a randomised, cross-sectional, state-wide population-based survey, 6034 people over two years completed face-to-face interviews in South Australia by trained interviewers using piloted questions (74.2% participation rate). Respondent demographics, type of grief help sought, and circumstantial characteristics were collected. Uni- and multi-variate logistic regression models were created.ResultsOne in three people (1965/6034) had experienced an 'expected' death of someone close to them in the last five years. Thirteen per cent sought help for their grief from one or more: friend/family members (10.7%); grief counselors (2.2%); spiritual advisers (1.9%); nurses/doctors (1.5%). Twenty five respondents (1.3%) had not sought, but would have valued help with their grief.In multi-variate regression modeling, those who sought professional help (3.4% of the bereaved) had provided more intense care (OR 5.39; CI 1.94 to14.98; p < 0.001), identified that they were less able to 'move on' with their lives (OR 7.08; CI 2.49 to 20.13; p = 0.001) and were more likely not to be in full- or part-time work (OR 3.75; CI 2.31 – 11.82; p = 0.024; Nagelkerke's R2 = 0.33).ConclusionThese data provide a whole-of-population baseline of bereavement help-seeking. The uniquely identified group who wished they had sought help is one where potentially significant health gains could be made as we seek to understand better any improved health outcomes as a result of involving bereavement services.

A New Model for Long-Term Care: Balancing Palliative and Restorative Care Delivery

ABSTRACT Nursing homes have been mandated to maintain or promote the physical and psychological functioning of residents since the enactment of the 1987 Omnibus Reconciliation Act. Although this restorative approach to care has improved outcomes for some residents (Institute of Medicine, 2001), it ignores the reality that all permanently placed residents will die. A new model for long-term care, one that includes a simultaneous restorative and palliative approach to care delivery, is proposed. Palliative care principles provide a guiding framework for changing care delivery. Basic tenets, such as resident and family viewed as a unit of care, interdisciplinary teamwork, and interdisciplinary plans of care, provide a basis for specific operational suggestions. Operational strategies, such as psychosocial and spiritual support for family, resident decision making and participation in goal setting, expertise in aggressive pain and symptom control, and bereavement services following resident death, are described.

The voluntary contribution to UK childhood bereavement services: Locating the place and experiences of unpaid staff

This paper describes the unpaid contribution to UK childhood bereavement service provision. Data on staffing was gained through a national postal survey and eight organizational case studies. Compared to volunteers in specialist palliative care and hospice settings, unpaid staff were drawn from a younger age range, were more likely to be in full or part-time employment, and had more personal experience of a close bereavement. Whilst services were located in both the statutory and non-statutory sector, the use of unpaid staff was not so clearly differentiated. Three types of staffing arrangements were identified: services run solely by paid staff (11%), solely by unpaid staff (14%), or by a mixture of both (73%). The study highlighted the ambiguity in defining “voluntary,” and the difference in the use of unpaid staff, both within and between services. The terms “operational” and “non-operational” staff, and “core” and “support” operational activities, were introduced to reflect more fully the diversity, levels of responsibility, and extent to which services rely on unpaid staffing to deliver their core work. The changing nature of the UK non-statutory sector and the increasing pressure to bureaucratize services creates additional complexity that will need to be addressed in the near future.

The nature and use of bereavement support services in a hospice setting

This study formed part of a larger project designed to evaluate a hospice-based bereavement support service in Ireland. It involved a detailed assessment of the views of service attenders and non-attenders. A postal survey was administered to all bereaved clients who were invited to one or more bereavement support services (n = 517). Respondents (n = 243; 47%) completed: 1) a Bereavement Services Questionnaire; 2) a measure of grief reaction (TRIG) and 3) a measure of religiosity (SCSORF). A total of 243 people (47%) returned completed questionnaires, most of whom were satisfied with the service, (although not all had attended all elements of the bereavement service). However, a number of improvements were emphasised. Several statistically significant differences (P < 0.05) also emerged between service attenders and non-attenders with respect to grief reaction and other key factors (e.g., the age and relationship to the deceased). The findings emphasise the needs and views of both attenders and non-attenders and provide important lessons for the implementation and development of hospice-based bereavement support services.

Supporting children and families facing the death of a parent: part 1

To present findings from a review of key literature and from a scoping of current provision of support for children facing the death of a parent. A summary of the findings from these is reported here. To set out the background and context to the evaluation of a new service aimed at supporting children and families facing the loss of a parent from cancer, key literature was reviewed and a scoping of current bereavement support for children and families was conducted using online searching, telephone and face-to-face communications. The review processes uncovered a range of national and local bereavement services. Bereavement was reported as a normal life event and part of human experience. Health, education and social services personnel need to respond to individual needs, accepting that not all bereaved children require complex, long-term interventions. At national and global levels there was recognition that the needs of bereaved children require careful assessment. A complex range of initiatives have been developed across the UK aimed at supporting children facing the death of a family member. The fragmented nature of provision makes it difficult to be comprehensive or all-inclusive when describing service provision in this area.

Bereaved parents' perspectives on their needs

The loss of a child can be traumatic for parents, given the profound bond established with the deceased child. Parental bereavement and the need for bereavement services are not well understood. This study examined parental perspectives regarding bereavement services from a pediatric oncology treating center. A 2-h focus group of seven parents, audiotaped and transcribed verbatim, was conducted by two facilitators using open-ended questions to generate discussion regarding their views of what services were or would be helpful during early bereavement. Parents perceived flexible and continuous bereavement services from the treating hospital as a necessary transition to community services. Talking to other parents with similar experiences and maintaining contact with staff at the treating hospital were considered critical in their healing after the loss. Transitional multimodality bereavement services offered by the treating hospital will improve the quality of life of bereaved families.

Researching a Best-Practice End-of-Life Care Model for Canada

The vast majority of the 220,000 Canadians who die each year, principally of old age and progressive ill health, do not have access to specialized hospice or palliative care. Hospice and palliative care programs are unevenly distributed across Canada, with existing programs limited in capacity and services varying considerably across programs. End-of-life (EOL) care is defined as "The services that may be needed by dying persons and their families or friends in the last year of life, as well as bereavement services following death." Although some health and social services may be available, most dying Canadians are in the difficult position of not having ready access to a full range of services that could ease their final days of life. Most are thus at risk of uncoordinated and potentially inadequate EOL care. Among all persons, dying persons are arguably the most vulnerable. The dying process is often difficult as a result of emotional and physical challenges. Although the loving support of family and friends for dying persons is irreplaceable, EOL care is an important public obligation. A synthesis research project was conducted to identify a best-practice EOL care model for Canada, one featuring coordinated or integrated EOL care. Through site visits, literature reviews, Web-based surveys, and a home care data analysis, four essential components for a best-practice integrated EOL care model for Canada were identified: (a) universality, (b) care coordination, (c) assured access to a broad range of basic and advanced EOL services, and (d) EOL care provision regardless of care setting. This model is offered as a guide for the development of EOL care services across Canada.

Bereavement summer camp for children and teens: A reflection of nine years

The need to facilitate healthy bereavement, resulting from both deaths from life-threatening illnesses as well as violent, sudden deaths, is great. For the past 9 summers, Bereavement Services at Calvary Hospital, Bronx, New York, has sponsored a week-long day camp for bereaved children and adolescents. Each year the program expands by adding new activities to meet the needs of grieving children in therapeutic ways congruent with current research and timely clinical interventions. This article reflects on our experience, which has evolved and become stronger over the past 9 years. It is believed that this program is replicable and can be initiated and developed by other hospitals and organizations interested in developing similar programs.

Children and young people's experience of UK childhood bereavement services

This paper describes the experiences of bereaved children and parents and their use of UK childhood bereavement services. It forms part of a larger qualitative study and was undertaken in the context of questions about the impact of bereavement on children and their status and participation in research, raising important methodological and ethical issues. Interviews were undertaken with 24 bereaved children and 16 parents who had used one of eight organizational case study services. Participant observation of six group interventions was undertaken. The study identified a multiplicity of bereavement experiences both within and between families. Children identified difficulties in managing and expressing their feelings, isolation, problems at school, and fear for their surviving parent. Parents found it difficult to maintain their parenting role as they struggled with their own bereavement and the disruption in their circumstances. Children and parents who participated in interventions were able to describe the significant ways in which they found it helpful, including the benefit of speaking to someone who understood their experience. Although some experienced difficulties in attending group interventions, bereaved parents welcomed the support to help them provide appropriate care for their bereaved child. By providing an “ecological niche” for bereaved children, UK childhood bereavement services contribute to meeting outcomes identified in recent policy initiatives.

Are we getting it right? Parents' perceptions of hospice child bereavement support services

Objective : To determine parents' experiences and perceptions of a support service for families with bereaved children, provided by a UK charity for cancer patients in seven hospices in the UK. Method : Individual interviews with 25 purposively selected parents. Results : Parents used the service for: advice and reassurance; support for their children while they grieved; and advice on ameliorating behavioural difficulties at home and school. Non-service users did not think formalised support was necessary or had other sufficient support. Nevertheless, important to parents in both groups was that the service existed so their children's needs were being or could be addressed. Children and their parents benefited from talking to a non-family member, and being involved in social events that reduced feelings of isolation. Conclusion : The hospice child bereavement service was offered as an integral part of palliative cancer care support. Future research could explore collaborative work between counsellors and other professionals. Pallative Medicine 2007; 21: 401—407

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.

Parents’ and Children's Perspectives of a Children's Hospice Bereavement Program

The provision of some form of bereavement services is an integral part of any pediatric hospice program. The Canuck Place hospice program has offered bereavement services since it began in 1995. A mixed-method evaluation of the impact of the Canuck Place program on the families it served during its first two-and-a-half years of operation was conducted. The bereavement services reviewed included follow-up care for families, and bereavement support groups for children and their parents. Eight children were interviewed in the initial phase, and nine completed a survey questionnaire; 28 parents rated their level of satisfaction with various aspects of their experience with the parent support group. Findings indicated that the follow-up component of the program was well-received by family members. When assessing their group experiences, children and parents most appreciated the support and understanding they received, the freedom to express themselves, a diminished sense of isolation, and the normalization of their emotions. Practical considerations when offering bereavement support groups are discussed in this paper.

Bereavement Services for Family Caregivers: How Often Used, Why, and Why Not

Bereavement services are central to high-quality end-of-life care, however, little is known about how frequently and why such bereavement services are used and not used. We examined family caregiver reports about how often they used bereavement services, predictors of their use, and reported reasons for not using bereavement services. Prospective cohort study of family caregivers (n = 161) of patients with cancer enrolled with hospice between October 1999 and September 2001. We conducted bivariate and multivariable analyses to determine predictors of bereavement service use, adjusted for a broad range of factors including caregiving experiences, major depressive disorder (MDD), relationship with the deceased, and demographic factors. We used content analysis to summarize responses to open-ended questions concerning why individuals did not use bereavement services. We found that approximately 30% of family caregivers used bereavement services in the year postloss, and the majority of these caregivers used services in the first 6 months postloss. Even among bereaved caregivers with MDD, less than half (47.6%) used bereavement services. Factors associated with using bereavement services included being a spouse caregiver, younger age, having MDD at study enrollment, witnessing highly distressing events pertaining to the patient's death, having assisted the patient with more Instrumental Activities of Daily Living (IADLs) prior to the patient's death, having greater availability of instrumental support for oneself, and physician communication with the caregiver about the patient's prognosis before the patient's death. The most common given reason for nonuse was the perception that bereavement services were not needed or would not help. Addressing caregiver receptivity to bereavement services will be an important aspect of increasing appropriate use of such services. Future studies might examine specific interventions for reducing barriers and increasing receptivity to bereavement service use.

Some issues in the provision of adult bereavement support by UK hospices

This paper considers some issues in the provision of adult bereavement support in UK hospices. The paper is based on the findings of a multi-method study conducted in two phases over 30 months (2003–2005) to examine the nature and quality of adult bereavement support in UK hospices from the perspectives of bereaved people and professional and volunteer bereavement workers [Field, Reid, Payne, & Relf (2005). Adult Bereavement Support in Five Hospices in England. Sheffield, UK: Palliative and End-of-Life Care Research Group, University of Sheffield. (Available from Professor Payne)]. It discusses the importance of continuity between pre-bereavement and bereavement support, the integration of bereavement services within hospices and the involvement of volunteers in bereavement support. It then discusses the engagement of UK hospices in the broader development of bereavement support. Although hospices have developed expertise in supporting bereaved people, our research suggests that they have not had a major impact on other health service providers, such as general practitioners and distinct nurses and staff in acute hospital trusts, in this area.