A benefit-cost analysis of an international hospital end-of-life care volunteer service: The iLIVE Volunteer Study
Claudia Fischer1, Michael Berger1, Misa Bakan2, Ellershaw John3, Haugen Dagny4,5, Goossensen Anne6, Mason Stephen3, McGlinchey Tamsin3, Ruiz-Torreras Inmaculada7,8, Smeding Ruthmarijke3, Van der Heide Agnes9, Simon Judit1
1Medical University of Vienna, Austria; 2University Clinic Golnik, Slovenia; 3University of Liverpool, United Kingdom; 4Haukeland University Hospital, Bergen, Norway; 5University of Bergen, Norway; 6University of Humanistic Studies, the Netherlands; 7Cudeca Hospice Foundation, Spain; 8IBIMA Institute, Malaga, Spain; 9Erasmus MC, the Netherlands
Objectives: The aim of this study was to perform an economic analysis of the iLIVE volunteer programme, which was implemented in five hospitals in the following European countries: Norway, Slovenia, Spain, the Netherlands and the United Kingdom.
Design: To assess the expected value of the service, the economic analysis focused on assessing the cost of the service and the operational benefit-cost ratio (BCR) per country.
Methods: A costing proforma captured all relevant staff and non-staff costs of developing, implementing, and operating the volunteer service from the hospital perspective. 2021 country-specific salary costs were used, and the value of volunteer time was approximated using the opportunity cost of the average hospital nurse salary in each country. The operational BCR compared the annual value generated by volunteering with the annual operating costs. Break-even calculations determined the annual volunteer hours needed to offset operational costs and achieve a BCR of 1 in the participating countries.
Results: The implementation of the volunteer programme and related costs differed substantially between the countries. Total service development costs ranged from €3,013 in Spain to 15,829 in Norway, while operational costs standardized to one year ranged from 4,803 in the Netherlands to €41,303 in Norway. Operational BCRs ranged from 0.1 in Norway and Slovenia to 1.3 in the United Kingdom. The annual volunteer activity needed to outweigh the operational costs, assuming 20 volunteers, ranged from 5.3 hours (the Netherlands) to 54.3 hours (Norway).
Conclusion: The iLIVE volunteer programme varied widely across participating countries, with differences in volunteer supervision, staff seniority, and associated costs. Challenges posed by the COVID-19 pandemic, like restricted ward access, hindered volunteer activities and may have limited the full impact of the programme. The value analysis emphasizes the need to identify and consolidate best practices for future implementation.
Acknowledgements: The research presented in this abstract is funded by the EU's Horizon 2020 programme under GA ID: 825731.
A 'buddy' as an additional resource in the care of patients with advanced, incurable illness and their families: Findings from qualitative interviews with patients, bereaved relatives and health and social care professionals.
Alina Kasdorf, Raymond Voltz, Julia Strupp
University Hospital Cologne, Germany
Background: The unmet needs of people who are being cared for at home and who wish to die there and their families, are very high and the need for support is very complex. Although structures and services exist to support patients and their families, these services do not reach people in a timely manner or at the time when they are most needed.
Objective: To define, on the basis of specific experiences, elements of a possible complementary support concept to facilitate dying at home.
Design: Qualitative interview study as part of a larger mixed-methods study called "Dying at Home".
Methods: Qualitative triangulation of data was conducted from national individual interviews (patients and relatives, n = 45) and focus group discussions (health and social care professionals, n = 22). Qualitative content analysis of the verbatim transcribed interviews was carried out using MAXQDA©.
Results: Participants reported a lack of a contact person who could provide real-time information about support services, initiate appropriate end-of-life care at home, provide emotional support and be easily accessible - a so-called 'buddy'. Differences in support needs were also found between groups (e.g. cancer/non-cancer patients). Communicating one's needs was also identified as a reason for not using services.
Conclusion: Our findings show the wide range of elements that can be used to address unmet emotional, informational, appraisal and instrumental needs in end-of-life care at home. Additional and proactive support is needed to consolidate existing health and social care structures where they are unknown or insufficient to organise care according to families' needs. The concept of a 'buddy' for people with advanced, incurable illness could be helpful here, helping them to navigate and access the different services and encouraging them to identify their own needs and seek help. It is important that the "buddy" is accessible at a low threshold and, as a contact person, shares his/her knowledge in real time if possible.
Making it happen: Since 1 May 2023, the project "A buddy for the seriously ill and their relatives" has been funded by the Deutsche Fernsehlotterie: https://buddy-koeln.de/. From 2024, the project will be evaluated by the Department of Palliative Medicine with funding from the Marga and Walter Boll Foundation.
Pilot-testing and evaluation of the ‘Attentive Visitors’ training program to support community volunteers in their palliative care signposting role’
Sabet Van Steenbergen1,2, Steven Vanderstichelen1,2,3,4, Else Gien Statema1,3, Luc Deliens1,2,3,4, Sarah Dury4,5, Kenneth Chambaere1,2,4
1End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium; 2Department of Public Health and Primary Care, Ghent University, Ghent, Belgium; 3Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium; 4Compassionate Communities Centre of Expertise, Vrije Universiteit Brussel (VUB), Brussels, Belgium; 5Department of Educational Sciences, Vrije Universiteit Brussel (VUB), Brussels, Belgium
Background: The ‘Attentive Visitors’ training program was developed to increase community volunteers’ (CV) knowledge, skills and confidence regarding their role, signposting function, and communication to address palliative care (PC) needs with community residents (CR) and healthcare professionals (HCP).
Aims: The aim of the study is to pilot-test and evaluate the training’s effectiveness and acceptability for volunteers and feasibility for stakeholders.
Methods: A mixed-method design was used, using a quantitative pre-test/post-test survey at three timepoints to evaluate effectiveness; semistructured interviews to evaluate acceptability and; administrative data analysis combined with a stakeholder group discussion to evaluate feasibility.
Results: Among 59 CV's across 6 locations, 37 completed both modules (training + follow-up moment), 19 participated in interviews and 8 stakeholders took part in the feasibility group discussion. The training had a positive and sustained (at T2) effect on PC knowledge (0.58 less incorrect answers at T2; p=0.011) and self-efficacy in discussing noticed signals of needs with a CR (+0,51 at T2; p<0,001) and HCP (+0,42 at T2; p=0,022). In the qualitative interviews, CV's reported increased awareness of the importance of volunteers, self-efficacy in boundary setting, self-confidence in communicating with CR's, informal carers and HCP's, and emphasized the importance of sharing experiences. CV's reported that the training met expectations and was useful to their volunteering. CV's found the benefits to be in proportion with required efforts. Implementation costs were ranged between €242,41 and €1.238,21 per training, which stakeholders considered feasible for implementation.
Conclusions: The training program was evaluated positively seen it enables CV's to respond better to PC needs and to fully utilize their complementaryrole. This training program can be scaled up and/or integrated into educational programs of stakeholder organizations.
Funding: Kom op tegen Kanker
Patient perspectives on conversations with healthcare professionals about life in the context of serious illness and palliative care
Malin Bengtsson1,3, Stina Nyblom1,2, Ramona Schenell4, Lena von Bahr5, Margareta Haag6, Joakim Öhlén1,3,7
1Palliative Centre at the Sahlgrenska University Hospital, Sweden; 2Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; 3Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; 4The City of Gothenburg, Administration of the elderly, health and social care, Department of Quality and Development, Gothenburg, Sweden; 5Hematology at Sahlgrenska University Hospital, Region Västra Götaland, Gothenburg, Sweden; 6Chairman of the Network against Cancer, patient representative, Sundbyberg, Sweden; 7Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Background: A challenge for palliative care is the general perception that palliative care is equal to end-of-life care. This can make healthcare professionals hesitant to initiate conversations about early palliative care and life in the context of serious illness. There is therefore a risk that health care professionals postpone the introduction of palliative care to the very end of life.
Aim: To describe and interpret patients’ experiences and preferences for conversations with healthcare professionals about life in the context of serious illness and palliative care
Design and method: Qualitative design. Participants were recruited at a specialized palliative care unit and a hematology unit at a university hospital in Sweden. Twenty-seven people (45-84 years) have given their consent to participate and the interviews were conducted in the participants homes or at the hematology clinic. The transcribed audio recordings have been preliminarily analyzed qualitatively descriptively and will now, after the data collection is completed, be analyzed more thoroughly with phenomenological hermeneutic analysis.
Preliminary results: According to the patients, conversations about severe illness with healthcare professionals were mainly about disease specific medical treatments. Conversations about the future, symptom relief, family support and places of care were mainly exemplified in conversations with palliative care specialists. Several patients say that health professionals must be sensitive to when the patient is receptive personally, in order to offer well timed conversations. Trust in the person the patient talks to about such issues is emphasized as more important than the person's profession. The concept of palliative care was perceived by several participants as a loaded word and something that did not yet apply to them. Rather, they said that palliative care will apply later when they need hospice care. Many participants wanted more knowledge about available support when disease specific treatment is no longer possible.
Discussion: The participants examples of topics in conversations with professionals were dominated by treatment related issues and most likely framed by treatment. There is a particular need for professionals to invite the patient to talk about uncertainties, the future, preferred places of care and what is particularly matters to them.
Information meetings on end-of-life care for Turkish and Moroccan older people.
Tessa D. Bergman1,2, Annicka G.M. van der Plas1,2, Bregje D. Onwuteaka-Philipsen1,2, H. Roeline W. Pasman1,2
1Department of Public and Occupational Health, Amsterdam UMC, Amsterdam, The Netherlands; 2Center of Expertise in Palliative Care, Amsterdam UMC, Amsterdam, The Netherlands
Background
Culturally sensitive communication with Turkish and Moroccan older people about end-of-life care is important. Factors such as a language barrier, taboos or beliefs about dying may play a role. Information meetings can increase awareness and knowledge of end-of-life care and stimulate ACP.
Objectives
To explore the experiences with information meetings about end-of-life care and to assess whether information meetings increase ACP conversations with the GP and relatives in Turkish and Moroccan older people.
Design
A pre-post interventional study was designed with questionnaires before (T0), at the end (T1), and 6 months after the information meeting (T2). The information meetings were part of a larger project; a standard presentation was used. Current meetings were hosted by experienced health educators (partly) in Turkish or Arabic language.
Methods
In 19 information meetings, 70 Turkish and 95 Moroccan people completed questionnaires before and/or directly after the meeting, with respectively 29 and 11 of them also completing a questionnaire 6 months later. Descriptive statistics were done.
Results
Of Turkish and Moroccan participants, 91% and 77% indicated that the information meeting met, and 6% and 22% somewhat met, their expectations. The majority of Turkish and Moroccan participants rated the choice of topics (91% and 87%, respectively) and the clarity of information (94% and 81%, respectively) as (very) good. None of the Turkish and 2 in 11 Moroccan participants reported to have had ACP conversations with their GP in response to the meeting at T2. Both Turkish (T0: 10%; T2: 38%) and Moroccan (T0: 20%; T2: 50%) participants discussed their wishes more with relatives at T2.
Conclusion
Information meetings stimulate Turkish and Moroccan older people to have ACP conversations with relatives, but show little effect on conversations with their GP. In general, Moroccan and especially Turkish older people were satisfied with the information meetings. A standard presentation with all important topics can be used.
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