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Table 1 Diversity responsive measures included in the pilot instrument

From: How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument

1. The project set-up
1.1 Gathering insight into the diversity of the patient population
We gather insight into the diversity of the patient population via literature or empiric research.
The demographic composition of the patient population; differences in prevalence and care needs based on ethnicity and intersecting factors.
We explicitly describe the diversity of the patient population in the project proposal.
The diversity of the patient population is described; choices (not) to include patients with a non-western migration background are justified; when the choice is made to not actively include patients with a non-western migration background, implications for the outcome of the project are described in the project proposal.
1.2 Monitoring the engagement of a diverse patient population
We include ethnicity as a variable in our research project.
Patient ethnicity will be registered; subgroup analysis will be included in the data analysis plan with the aim to determine whether outcomes differ between groups based on ethnicity and intersecting factors.
We monitor differences in care needs.
With the help of existing monitor and registration systems we will evaluate the care for patients with a non-western migration background and their relatives before, during and after the project.
1.3 To establish a representative project team
We secure knowledge on the topic of palliative care for patients with a non-western migration background within out project team.
The project team knows who the relevant partners are in the field of diversity in palliative care; partners are engaged from the start; agreements are made about possible contributions.
2. The project execution
2.1 Engaging patients with a non-western migration background
We gather input from patients (panels or organizations) during various project stages.
The patients whom we engage are representative for the patient population. E.g. when testing questionnaires or patient information materials we engage patients of varying educational levels.
We identify and overcome barriers for participation by patients with a non-western migration background.
We gather information on possible barriers amongst patient organizations representing patients with a non-western migration background.
2.2 Access to (care within) the project
We consider which patients we reach when selecting healthcare organizations where our study will be implemented.
There is geographical variety in locations where the project is implemented; when none of the locations are an entry into communities of patients with a non-western migration background, we search for additional sites.
We work to identify and overcome gatekeeper bias to patient enrollment, for example amongst healthcare professionals.
We engage healthcare professionals in the research project to increase awareness on the importance of enrolling patients with a non-western migration background; we circumvent gatekeeper bias by using patient information materials that are given to the patient directly.
Patient information materials within and about our project are understandable.
Patient information materials are basic and visual; if necessary, patient information materials are translated and adapted to increase cultural sensitivity.
Measurement instruments used in our project are appropriate for a diverse patient population.
When available, we use measurement instruments that have been tested on cultural validity; measurement instruments developed within our project are tested amongst a diverse group of patients.
If necessary, we employ ethnically matched interviewers to conduct consent procedures, questionnaires or interviews verbally and in the language of the patient.
With our project we contribute to increased access to palliative care for patients with a non-western migration background.
Within the project we work to educate patients with a non-western migration background and their communities; within the project we offer help with patient navigation through the palliative care system.
2.3 Quality of care within the project
We raise awareness on the increasing diversity of the patient population amongst healthcare organizations and healthcare professionals involved in the project.
Healthcare organizations and healthcare professionals involved in the project are made aware of the diversity of the palliative care patient population and potential differences in understanding of what constitutes ‘good palliative care’; healthcare organizations and healthcare professionals involved in the project are encouraged to work in a culturally competent fashion.
We offer training in cultural competencies to healthcare organizations and healthcare professionals involved in the project.
Cultural competencies are included as part of training provided in the project; additional training on cultural competencies is offered; healthcare organizations and healthcare professionals involved in the project are referred to external providers of training in cultural competencies.
Diversity in the workforce is a point of concern within our project (applicable when a project requires the formation of new care structures).
In healthcare organizations with an (ethnically) diverse patient population, this diversity is mirrored in the workforce.
3 Project follow-up
3.1 Implementation of project results
We work to sustain awareness on and efforts for diversity of the patient population in the palliative care innovation resulting from our project.
During the project we think about ways to sustain the palliative care innovation, including efforts to increase its responsiveness to patients with a non-western migration background, after the project has ended.
We advise responsiveness to patients with a non-western migration background in our recommendations or the implementation of the project in new locations.
We share relevant findings about patients with a non-western migration background as results from the project.
Where appropriate we report findings on differing outcomes between patient groups based on ethnicity and intersecting factors; We consult patient organizations representing patients with a non-western migration background on appropriate ways to share these results.
3.2 Sharing experiences on responsiveness to diversity within the palliative care project
We share lessons and successes in engaging patients with a non-western migration background in our project with third parties.
We share our experiences with other researchers, project teams, networks, partners, etc.; We encourage these parties to increase their projects’ responsiveness to (the growing) diversity of the patient population within palliative care.