Table 2 Observed barriers and adaptations based on usability testing

^a

Introduction text too lengthy and complicated.

We shortened the text, simplified the language and made the focus of the introduction more practical.

^a

Discussion about the exemption of people from Indonesia in the definition of ‘non-western migrants’.

We stopped using the distinction non-western.

^a

Difference between sentences in bold and normal writing unclear.

We either integrated the statements into one measure, or divided the statements into two measures.

^a

Sentence “based on ethnicity and intersecting factors”

Unclear what is meant by intersecting factors.

We take into account factors that contribute to underrepresentation of population groups, such as language, religion, culture, ethnicity migration history, education level, socioeconomic status, physical or intellectual disability, age, sex, gender and sexual preference.

^b

We include ethnicity as a variable in research in our project.

On one occasion it was mentioned that ethnicity was indeed registered, but not otherwise looked at.

This item was excluded as a result of the Delphi study.

^b

We monitor differences in care needs

With the help of existing monitors and registrations used in care we will evaluate the care for migrant patients and their relatives/caretakers before, during and after the project.

This was not necessarily done with the help of existing monitors and registrations.

Rephrased to:

To monitor the engagement of a diverse patient population

We consider factors^a that contribute to underrepresentation of population groups in research within our project, with the aim to determine whether differing outcomes between groups depend on these factors. For example as a subgroup analysis.

^aLanguage, religion, culture, ethnicity, migration history, educational level, socioeconomic status, physical or mental disability, age, sex, gender and sexual preference.

^b

We gather input from patients (panels or organizations) at differing project stages.

It was unclear that this included input from underrepresented groups.

Rephrased to:

We gather input from patients, patient panels or patient organizations relevant to our project, in all stages of the project.

^b

We consider the patients we do and do not reach when selecting healthcare organizations where our study will be implemented. There is geographical variety …

Variety in locations was often aimed for, for other reasons.

Rephrased to:

We implement the project in differing locations to guarantee access for underrepresented groups.

^b

Patient information materials about and within our project are understandable.

Too open for own interpretation.

Rephrased to:

We test whether patient information materials used in our project are appropriate in terms of language, (health) literacy level, and culture sensitivity.

^b

With our project we contribute to improved access to palliative care for patients with a non-western migrant background.

Too open for own interpretation.

Rephrased to:

We ensure that patient participation in our project improves access to palliative care for underrepresented / underserved patients and their communities, for instance through patient education, patient navigation or community outreach.

^b

We pay attention to responsiveness to patients with a non-western migrant background in our recommendations or implementation of the project on new locations.

Unclear whether this included implementation outside of the project.

Rephrased to:

We account for underrepresented groups in the recommendations or roll-out of our project.

^a

Difference between the five options (no, hardly, partially, mostly, completely) was hard to distinguish.

We changed to a three point score (no, partially, completely).

^a

It was unclear what the options represented.

We changed to a three point score and included a description of scoring options above the tick boxes (no, partially, completely).

^a

It was unclear that items could be not applicable, and could be scored as such.

We included the option ‘not applicable’ to the description of scoring options above the tick boxes and distinguishes it by using bold letters. (No, partially, completely, N.A.)

^c

Flipping pages between the measures and the tips.

Moved all the tips and recommendations to an attachment.

^a

It was unclear which tips and recommendations dealt with which subject.

We moved all the tips and recommendations to an attachment and added subject headings

^a

The question ‘Where does the project stand?’ in terms of responsiveness was misinterpreted and answered in terms of project stage.

We removed the textbox and instead included a smaller textbox for actions at the end of each measure.

Textbox where a summary of the evidence and measure for improvements could be written down was not used.

We removed the textbox and instead included a smaller textbox for actions at the end of each measure.

^c

Confusion about how far along the team was, if everyone was on the same page.

Added page numbers.

^c

Landscape orientation was unpleasant.

We changed lay-out to portrait orientation.

Questions about diversity amongst healthcare professionals arose.

We added tips and recommendations on this topic in the attachment.

^a

Unfamiliar terms: intersectionality, culture-sensitive, self-organization.

Instead of, or when using the terms we describe what they stand for.

^c

Discussion on whether we cover diversity with this instrument, which mostly (solely) targets non-westerns migrants.

We widened the scope of the instrument.