Pre-bereavement Support Research Articles

Pre-bereavement support, Norway and Sweden

Pre-bereavement support, Norway and Sweden

Reflections on some learning from the Covid-19 pandemic:

The Covid-19 pandemic has highlighted the significance of pre-bereavement care for families and children, especially when faced with parental death. Holistic family care tailored to meet the needs of the particular crisis the family face is hugely challenging for practitioners to provide whilst also caring for patients. Parents need specific support which is appropriate to their children’s needs for information, expressing their opinions and sharing their emotional responses about what they are facing. Parental bereavement has wide reaching consequences for children’s’ lives and we know that the ability of the surviving parent to support them is crucial. Starting to support parents before death provides the opportunity to ensure children are included in ways that are appropriate for that family. If we agree that children have rights and that pre-bereavement support is a core health need, then we must find ways of providing it. A discrete service to provide this specialised support across all areas of care is needed.

Support interventions provided during palliative care to families with dependent children when a parent has terminal illness: a scoping review protocol.

The objective of this scoping review is to identify and map support interventions provided during palliative care to families with dependent children when a parent has a terminal illness. For dependent children, losing a parent through terminal illness can be one of the most traumatic experiences they will face. Without age-appropriate information and support, parental death can lead to unresolved grief, post-traumatic stress, and longer-term negative social, emotional, educational, and behavioral consequences. Support from health care professionals is provided, but challenges within hospice and community palliative care mean the needs of dependent children may not be addressed. Greater emphasis is often placed on children's and families' bereavement needs as opposed to their pre-bereavement needs. The status of pre-bereavement support in palliative care for these families has not been documented. We will include studies of support interventions provided to families with dependent children when a parent has a terminal illness that are delivered during palliative care and in settings including, but not limited to, hospices, hospitals, and the community (including family and care homes). Empirical, peer-reviewed studies based on qualitative, quantitative, or mixed methods data, and gray literature, reporting any stage of intervention development will be included. This review will follow the JBI approach for scoping reviews. Multiple database searches will be conducted. Two authors will independently review full-text articles and extract data. Interventions will be mapped in terms of characteristics, evaluation methods, and implementation challenges. Data will be presented in tables, diagrammatic form, and narrative summary.

The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death

ContextThe investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. ObjectivesThis study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. MethodAll family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012–2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. ResultsThe response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P < 0.001) and that patients have achieved their preferred place of death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). ConclusionsThe results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death.

Experiences of hospice inpatient nurses in supporting children before the death of a parent

The need for pre-bereavement support for children facing the death of a parent is well recognised but how this is done by hospice ward nurses in practice is not well known. To explore the experiences of hospice ward nurses' identification of the support needs of children under 18 years old facing the death of a parent, and the impact on hospice nurses when involved in providing this support. Semi-structured individual interviews with hospice nurses working on a single UK inpatient unit were audio-taped and analysed using thematic analysis to produce themes and subthemes. Nurses were highly reflective, discussing their personal experiences, and identified potential enablers and barriers to providing support. Child and family factors were identified as influencing identification of support needs. Multiple factors influencing provision of support emerged. Formal training and readily available resources would support hospice nurses working with children.

P143 Memories matter: Facilitating expression though creativity

IntroductionIn 2012 the Hospice extended the reach of its traditional family support services with two dedicated events for children and families. Each event was designed to facilitate remembrance, and promote...

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.

Childhood bereavement services: a survey of UK provision.

The purpose of the study was to identify the location, range and type of childhood bereavement service provision in the UK. A questionnaire was mailed to 127 services who were either solely dedicated to childhood bereavement or who offered a service within the range of work of a host organization and for which there was a supporting organizational structure. Responses were received from 108 services (a response rate of 85%). The findings identified that 85% of childhood bereavement services are located in the voluntary sector; 14% are dedicated childhood bereavement services, while 86% are offered as part of a host organization. Forty-four per cent of host organizations are hospices. The majority of services (73%) relied on both paid and unpaid staff, with 11% relying entirely on paid staff and 14% of services relying entirely on unpaid staff. The interventions offered ranged from individual family work (86%), individual child work (62%), groupwork with families (53%) and groupwork with children (45%). In addition, services offered prebereavement support (64%), a 'drop-in' service (17%), information and advice (95%), training (32%) and the provision of resources (88%). As well as offering a service to children and their families, 74% of childhood bereavement services provided a service to 'secondary users', such as schools (66%), the emergency services (28%) and other professionals (63%). In terms of funding, 12% of services relied solely on external sources of funding, including donations, legacies, revenue from the host organization or grants, while 12% of services relied solely on internal sources of funding, including fundraising and training. The majority of services (73%), however, gained income from a range of sources. The study identifies the diversity of provision that has implications for the evaluation of childhood bereavement services.