Dataset Information

The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study.

ABSTRACT:

Background

The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers' efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects.

Methods

We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation.

Results

Researchers' efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers' efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies.

Conclusion

Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

SUBMITTER: Torensma M

PROVIDER: S-EPMC7789154 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

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Publications

The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study.

Torensma M M Onwuteaka-Philipsen B D BD de Voogd X X Willems D L DL Suurmond J L JL

BMC palliative care 20210106 1

<h4>Background</h4>The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers' efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects ...[more]

PMID: 33407358

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Project description:BACKGROUND:European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects' diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument's focus. METHODS:After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument. RESULTS:A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument's focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument. CONCLUSIONS:The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.

Project description:ObjectivesIn 2018, Spain adopted a national law that significantly expanded healthcare access to all residents, including undocumented migrants. This was a substantial shift from a more restrictive system of coverage in previous years. However, irregular migrants continue to experience challenges accessing healthcare in Spain. This study aimed to describe the legislative and administrative barriers to implementation of this law from the perspective of providers and administrators of the healthcare system.DesignWe interviewed 12 individuals using a semistructured format.SettingSpain.Participants12 participants were interviewed; 7 males, 5 females. Participants included Spanish healthcare workers, government officials, hospital administrators, individuals working with non-governmental organisations focused on the provision of healthcare, and experts studying healthcare for underserved populations.Primary and secondary outcome measuresInterviews delved into personal experiences and knowledge of the entitlements and barriers of providing or trying to access care for undocumented migrants.ResultsThe interviews yielded eight key themes: (1) context of universal healthcare in Spain pre-2012; (2) erosion of trust as rationale for more restrictive policies of 2012; (3) challenges of the 3-month residency requirement; (4) areas of ambiguity: exceptions in the 2012 Royal Decree Law not discussed in the 2018 Royal Decree Law; (5) jurisdictional authority and conflicts between national and AC government; (6) near impossibility of obtaining documentation for exportation of healthcare; (7) difficulties obtaining necessary paperwork to register residency; and (8) rise of NGOs to provide support to irregular migrants.ConclusionWhile there has been a general political movement to expand healthcare access for undocumented migrants in Spain, there remains a fundamental need to clarify the legal entitlements for undocumented migrants nationally and create administrative consistency across autonomous communities for providing health cards for undocumented migrants. Other countries may be able to draw lessons from the Spanish experience about the legislative frameworks surrounding access to healthcare for undocumented migrants.

Dataset Information

The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study.

Background

Methods

Results

Conclusion

Publications

The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study.

Similar Datasets

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