Drug Death Related Bereavement and Recovery (END-project)

The Drug Death-Related Bereavement and Recovery project (END) is a large national research project at the Western Norway University of Applied Sciences (HVL), Norway. In 2020, Norway recorded the largest increase, as 324 people died due to a drug-related death. Due to a rising number of overdoses and other drug-related deaths in Norway, Europe, and the rest of the world, many family members and close friends have their lives affected by such unnatural, stigmatized, and potentially traumatic deaths. The initiators of the END project were Professor Emerita Kari Dyregrov (HVL) and Dr. Svanaug Fjær (Head of the Department of Welfare and Participation, HVL). The END project's main aim is to improve the life situation for the bereaved after drug-related deaths. When the project started in 2017, scarcely any research had examined the psycho-social function of the bereaved by drug-related deaths and what kind of help and support they received related to their needs. The project has an exploratory, inductive, and theory-developing design and uses a mixed-method approach, i.e., survey, document analysis, focus group interviews, and individual interviews. The project consists of three work packages with five studies about bereavement after a drug-related death, what help and support the bereaved receive concerning perceived needs, and welfare workers' experiences of helping the bereaved by drug-related death. How results from the END project can be used in the field of practice and education is discussed, adapted, and tried out in a research circle consisting of bereaved, professionals in municipalities, non-governmental organizations, and researchers from HVL (work package 3). In 2022, participants in the research circle are implementing various measures and development processes to improve the service offered to the bereaved of drug-related deaths. The END project aims to improve the quality of public health, reduce stigma and enhance the quality of life for the bereaved, thereby reducing social inequalities in health. Similar groups of bereaved groups may also benefit from the END project results. In addition, the research results will direct politicians, policymakers, and public authorities to improve competence and efficiency in health, care, and welfare services. By documenting the bereaved’s situations before and after death, exploring how health and welfare services can be optimized, and suggesting tailored interventions, the END project will contribute to developing individual adapted and effective services. Research knowledge from the project will be conveyed to students in health and welfare education nationally and internationally. The project group (n=19) is led by associate professors Lillian Bruland Selseng and Kristine Berg Titlestad. The project group has four user representatives working closely with the researchers, and user perspectives are central to all parts of the END project. In addition, the project has a reference group (n=14) consisting of employees in Norwegian municipalities, specialist health services and user organizations, and a large group of national and international experts on substance use, stigma, trauma, grief, health and welfare services, and health policy. All data collection in WP 1 and 2 is completed. Data processing, analysis, publications, and other dissemination are in progress in the various work packages. The project now has four doctoral fellows and one postdoc position. In addition, a doctoral candidate (Kristine Berg Titlestad) defended her thesis in August 2021. The topic in Titlestad's doctoral work was bereaved parents' description of the grief of losing a child, the consequences, and the need for help and support. The project publishes podcast episodes (https://feeds.transistor.fm/endcast), has a Facebook page (https://www.facebook.com/ENDprosjektet) and a website (https://www.hvl.no/end). The pages are regularly updated with results and activities in the project.

Registry studies document an increased risk of long-term serious grief, reduced quality of life and functioning after unnatural deaths and that bereaved often fail to receive help. Norwegian Health Authorities acknowledge the critical lack of knowledge concerning the life situation of drug death bereaved (DDB), what assistance they need and how health and welfare professionals assist them. This project will acquire such knowledge and enhance quality, competency and efficiency in health and welfare services for DDB. Strategic objectives will be met by strengthening the foundation of knowledge-based education and professional practice through practice-based research, to meet future challenges related to health and welfare services in order to prevent social marginalization and exclusion of stigmatized bereaved populations. The design contains three work packages (WP). WP1: Questionnaires (n=255) and individual interviews (n=42) examine the psycho-social functioning of DDB, and their evaluation of assistance. WP2: Analyses of policy documents and focus group interviews with 120 professional practitioners explore their support giving processes to DDB (WP2). WP3: A Research Circle of practitioners, bereaved, educators and researchers will use the new knowledge from WP1-2 to develop educational programs and help measures to increase recovery for DDB. The research approach will contribute to increased efficiency of local service delivery by facilitating and supporting innovative structures for organizational co-production and cross-sector collaboration. The R&D activities connect research, education and professional practice. To meet potential R&D challenges a large group of 29 interdisciplinary PG-AB members cooperate; including the world’s specialists of drug death bereavement. The fact that contact to key-personnel in the municipalities have been established, 255 DDB are recruited and support from health authorities is secured will increase the projects’ feasibility.