As migrant populations age, the care system is confronted with the question how to respond to care needs of an increasingly diverse population of older adults. We used qualitative intersectional analysis to examine differential preferences and experiences with care at the end of life of twenty-five patients and their relatives from Suriname, Morocco and Turkey living in The Netherlands. Our analysis focused on the question how–in light of impairment–ethnicity, religion and gender intersect to create differences in social position that shape preferences and experiences related to three main themes: place of care at the end of life; discussing prognosis, advance care, and end-of-life care; and, end-of-life decision-making. Our findings show that belonging to an ethnic or religious minority brings forth concerns about responsive care. In the nursing home, patients’ minority position and the interplay thereof with gender make it difficult for female patients to request and receive responsive care. Patients with a strong religious affiliation prefer to discuss diagnosis but not prognosis. These preferences are at interplay with factors related to socioeconomic status. The oversight of this variance hampers responsive care for patients and relatives. Preferences for discussion of medical aspects of care are subject to functional impairment and faith. Personal values and goals often remain unexpressed. Lastly, preferences regarding medical end-of-life decisions are foremost subject to religious affiliation and associated moral values. Respondents’ impairment and limited Dutch language proficiency requires their children to be involved in decision-making. Intersecting gendered care roles determine that mostly daughters are involved. Considering the interplay of aspects of social identity and their effect on social positioning, and pro-active enquiry into values, goals and preferences for end-of-life care of patients and their relatives are paramount to achieve person centred and family-oriented care responsive to the needs of diverse communities.
BackgroundTo improve transmural palliative care for older adults acutely admitted to hospital, the PalliSupport intervention, comprising an educational programme and transmural palliative care pathway, was developed. This care pathway involves timely identification of palliative care needs, advance care planning, multidisciplinary team meetings, warm handover, and follow-up home visits. With this study, we evaluate changes in patient-related outcomes and transmural collaboration after implementation of the care pathway.MethodsWe conducted a before-after study, in which we compared 1) unplanned hospital admission and death at place of preference and 2) transmural collaboration before implementation, up to six months, and six to 18 months after implementation. Data from palliative care team consultations were collected between February 2017 and February 2020 in a teaching hospital in the Netherlands.ResultsThe palliative care team held 711 first-time consultations. The number of consultation, as well as the number of consultations for patients with non-malignant diseases, and consultations for advance care planning increased after implementation. The implementation of the pathway had no statistically significant effect on unplanned hospitalization but associated positively with death at place of preference more than six months after implementation (during/shortly after adjusted OR: 2.12; 95% CI: 0.84–5.35; p-value: 0.11, long term after adjusted OR: 3.14; 95% CI: 1.49–6.62; p-value: 0.003). Effects on transmural collaboration showed that there were more warm handovers during/shortly after implementation, but not on long term. Primary care professionals attended multidisciplinary team meetings more often during and shortly after implementation, but did not more than six months after implementation.ConclusionsThe pathway did not affect unplanned hospital admissions, but more patients died at their place of preference after implementation. Implementation of the pathway increased attention to- and awareness for in-hospital palliative care, but did not improve transmural collaboration on long-term. For some patients, the hospital admissions might helped in facilitating death at place of preference.
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Background and objective Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. Setting and sample The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. Method This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein’s involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. Findings and conclusion The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.
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In de palliatieve terminale zorg is men nog erg terughoudend in de toepassing van telehealth technologie, terwijl voorgaande studies wel de potentiele meerwaarde ervan hebben aangetoond. In deze postdoc aanvraag zal daarom nader onderzoek worden gedaan naar de acceptatie van telehealth in de palliatieve terminale zorg. Het doel van het onderzoek is inzichtelijk maken hoe telehealth ingezet zou moeten worden in de palliatieve terminale zorg opdat het van meerwaarde is in het ondersteunen van; 1) de uitwisseling van informatie tussen zorgvragers en zorgverleners, en 2) de sociale interactie van zorgvragers met familie en naasten. De thematiek van het onderzoek sluit aan bij de onderzoekslijn Technology in Society van het lectoraat Technology, Health & Care. Het lectoraat opereert vanuit de pijler Health & Wellbeing dat onderdeel vormt van de corporate onderzoeksagenda van Saxion getiteld Living Technology'. De postdoc zal onder supervisie van de lector het onderzoek nader gaan uitwerken en uitvoeren. Daarbij zal ook nauwe samenwerking worden gezocht met studenten en de praktijk. Tevens zal de postdoc onderdeel uitmaken van een onderwijsteam opdat vervlechting van onderzoek en onderwijs goed tot stand gaat komen. In grote lijnen zal het onderzoek bestaan uit een literatuurstudie en een studie in de praktijk naar het gebruik en ervaringen van telehealth in de palliatieve terminale zorg. Vervolgens zal nader onderzoek zich richten op het ontwerp van een testopstelling voor de toepassing van telehealth in de praktijk van palliatieve terminale zorg. De postdoc zal zorgdragen dat studentopdrachten worden uitgezet bij diverse opleidingen opdat studenten kennis maken met het doen van onderzoek, en dat inspirerende colleges worden ontwikkeld, ingebed en verzorgd in diverse curricula. Daar waar mogelijk gaan studenten en docenten van verschillende opleidingen samenwerken om de gewenste interdisciplinariteit vorm te geven. Tot slot zal de postdoc in het kader van professionalisering zorgdragen voor kennisoverdracht naar docenten.
