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Background: Informal carers of terminally ill patients play a vital role in providing palliative care at home, which impacts on their pre- and post-death bereavement experience and presents an up to 50% greater risk for mental-health problems. However, developing and implementing effective bereavement support remains challenging. There is a need to build the evidence base for music therapy as a potentially promising bereavement support for this vulnerable population. This study aimed to co-design an international best practice agenda for research into music therapy for informal carers of patients pre- and post-death bereavement., Methods: Online half day workshop using a World Café approach; an innovative method for harnessing group intelligence within a group of international expert stakeholders (music therapy clinicians and academics with experience of music therapy with informal carers at end-of-life). Demographics, experience, key priorities and methodological challenges were gathered during a pre-workshop survey to inform workshop discussions. The online workshop involved four rounds of rotating, 25-minute, small group parallel discussions using Padlet. One final large group discussion involved a consensus building activity. All data were analysed thematically to identify patterns to inform priorities and recommendations., Results: Twenty-two consented and completed the pre-event survey (response rate 44%), from countries representing 10 different time zones. Sixteen participated in the workshop and developed the following best practice agenda. The effectiveness of music therapy in supporting informal carers across the bereavement continuum should be prioritised. This should be done using a mixed methods design to draw on the strengths of different methodological approaches to building the evidence base. It should involve service users throughout and should use a core outcome set to guide the choice of clinically important bereavement outcome measures in efficacy/effectiveness research., Conclusions: Findings should inform future pre- and post-death bereavement support research for informal caregivers of terminally ill patients. This is an important step in building the evidence base for commissioners and service providers on how to incorporate more innovative approaches in palliative care bereavement services., (© 2024. The Author(s).)

Background: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure., Aim: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic., Design: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data., Setting/participants: 711 adults bereaved in the UK between March and December 2020, recruited via media, social media, national associations and community/charitable organisations., Results: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n = 422) or their General-Practitioner (60%, n = 428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n = 149)/General-Practitioner support (52%, n = 135). About 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help and not knowing how to access services. About 39% ( n = 279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation., Conclusions: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options and social/educational initiatives to bolster informal support and ameliorate isolation.

ABSTRACTObjective:Provision of bereavement support is an essential component of palliative care service delivery. While bereavement support is integral to palliative care, it is typically insufficiently resourced, under-researched, and not systematically applied. Our aim was to develop bereavement standards to assist palliative care services to provide targeted support to family caregivers., Method: We employed a multiple-methods design for our study, which included: (1) a literature review, (2) a survey of palliative care service providers in Australia, (3) interviews with national (Australian) and international experts, (4) key stakeholder workshops, and (5) a modified Delphi-type survey., Results: A total of 10 standards were developed along with a pragmatic care pathway to assist palliative care services with implementation of the standards., Significance of Results: The bereavement standards and care pathway constitute a key initiative in the evolution of bereavement support provided by palliative care services. Future endeavors should refine and examine the impact of these standards. Additional research is required to enhance systematic approaches to quality bereavement care.

Background: Enabling patients to die in their preferred place is important but achieving preferred place of death may increase the informal carer's risk into bereavement., Aim: To determine risk factors of family carers bereaved through cancer in Northern Ireland., Design: These results form part of a larger QUALYCARE-NI study which used postal questionnaires to capture quantitative data on carer's bereavement scores using the Texas Revised Inventory of Grief., Setting/participants: Participants were individuals who registered the death of a person between 1 December 2011 and 31 May 2012; where cancer (defined by ICD10 codes C00-D48) was the primary cause; where the deceased was over 18 years of age and death occurred at home, hospice, nursing home or hospital in Northern Ireland. Participants were approached in confidence by the Demography and Methodology Branch of the Northern Ireland Statistics and Research Agency. Those wishing to decline participation were invited to return the reply slip. Non-responders received a second questionnaire 6 weeks after initial invitation. Results indicated that risk factors positively influencing bereavement outcomes included patients having no preference for place of death and carers remaining in employment pre- or post-bereavement. In contrast, patients dying in hospital, carers stopping work, being of lower socio-economic status and close kinship to the deceased negatively affected bereavement scores. Family carers should be adequately supported to continue in employment; priority should be given to assessing the financial needs of families from lower socio-economic areas; and bereavement support should focus on close relatives of the deceased.

In addition to addressing nursing and medical needs, the social needs of patients within hospice care require assessment (i.e., relationships, isolation, loneliness, societal inclusion or exclusion, negotiating adequate formal and informal support, or living with a life-limiting condition). The objectives of this scoping review are to examine the challenges of adult patients in receipt of hospice care during the COVID-19 pandemic and to identify innovative changes to care during the pandemic. The methodology of the scoping review follows the Joanna Briggs Institute framework developed in 2015. The context included hospice services (inpatient, outpatient and community). In August 2022, PubMed and SAGE journals were searched from 2020 onwards for studies published in English, which focused on COVID-19, hospice, social, support and challenges. Titles and abstracts were independently screened by two reviewers against agreed criteria. Fourteen studies were included. Data were independently extracted by authors. Emerging themes were loss due to COVID-19 restrictions, challenges for staff, barriers to communication and transition to Telemedicine, and positive effects of the pandemic. Pivoting to Tele-medicine and restricting visitors reduced the risk of spreading coronavirus but resulted in patients being socially isolated from loved ones, and a reliance on technology to have sensitive conversations. [ABSTRACT FROM AUTHOR]

Prison populations are growing globally with an increase in older and infirm prisoners, as well as longer prison sentences, meaning more prisoners are likely to die while incarcerated. This scoping review explored the experiences of death in prison custody on staff and relatives. Ovid MEDLINE, Embase, CINAHL and PsycINFO were professionally searched, followed by a hand search. Empirical and non-empirical studies of deaths in prison custody were screened. Data extraction used Arksey and O'Malley's framework. Thematic analysis was underpinned by Braun and Clarke for identifying, analysing and reporting patterns. From 12,127 citations retrieved, 174 were selected for full-text review and 22 were included in the final scoping review. Thematic analysis revealed four themes: (i) transformative effect, (ii) time delays, (iii) conflicts of interest and (iv) support. Prison staff avoided contaminating their personal lives. Families were distressed by inaccurate and untimely information, inappropriate constraints and poor communication. Staff balanced security and humanitarian needs. Bereaved relatives and staff felt isolated, alienated and unsupported. Unmet advocacy, communication and social care needs, poor end-of-life and bereavement care could be improved through staff training and social work intervention. Staff need psychosocial support, supervision and counselling. [ABSTRACT FROM AUTHOR]