Background
Methods
Development of the pilot 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. |
Instrument testing
Delphi study
Usability testing
Results
Delphi study
Furthermore, experts agreed on the need for increased responsiveness to diversity and recommended to, in addition to migrants, include other groups at risk of being underrepresented. Some experts advised an intersectional approach. Intersectionality [19] can be used as an analytic framework to identify how social categorizations such as ethnicity, socioeconomic status or gender create overlapping and interdependent systems of discrimination or disadvantage that lead to exclusion. However, experts did mention intersectionality is a complex concept and a truly intersectional approach might be difficult to achieve within palliative care projects. Based on these results we constructed a new description of diversity responsiveness, extending our focus to migrants and other vulnerable groups, and asked the expert panel for consensus on this description in round two.“In my opinion many of the abovementioned aspects [items] are relevant, but the feasibility is often concerned with time and money. I am not sure how costly each individual measure is, but I think making a case for the relevance (by thorough research and lobby) can increase feasibility.” (2018.12.1 Expert)
Usability testing
Barrier | Adaptations | |
---|---|---|
Introduction | ||
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. |
Items | ||
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 factorsa 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. |
Score | ||
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.) |
Tips | ||
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 |
Summary | ||
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. | |
Lay-out | ||
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. |
Other | ||
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. |
Satisfaction
Some users mentioned they found the assessment confronting, because it uncovered the paucity in measures they had taken to be responsive. However, the subsequent discussion that lead to actions being formulated was regarded as very positive.“I had indeed already read it … and I have to say, it didn’t come easily. … That has to do with words such as intersectionality and there were some other terms. But otherwise it was quite accessible.” (2018.13 Researcher)
Yes, indeed, I found that to be very nice! … The actions are supported by the group. Especially because it is so confronting, in a certain way, that you see ‘we don’t do any of this’. And there was no one, not anyone that said ‘we don’t have to do it’ and is completely … I don’t think you will convince those. But in this group I really liked that it resulted in supported actions.” (2018.13 Researcher)
Applicability
“I think that the need for this instrument especially exists when writing proposals. That people’s attention is drawn to the instrument when they are writing proposals. … I think it would be useful for people. Because, usually, you merely do something based on your own vision and what you know as a team. But usually there is a lot more, and this [the instrument] can help you with that.” (2018.10 Researcher)
“You’re not going to do all of them. It’s as simple as that. … If you target this towards low literacy, I’m just picking something, and not specifically towards cultural diversity. Which is indeed very important, and can be an aspect of it, but if it is not only targeted towards that … I am not going to use one tool for patients with a non-western background, another for … The broader the applicability of a tool … ” (2018.12 Researcher)
Effect
During all self-assessments users identified actions they could take to improve diversity responsiveness in current or future projects. Users expressed an ambition to make these improvements, but did so carefully.“The good thing about this instrument, in your project proposal you do mention diversity, but this forces you to think more carefully about how you are going to incorporate it in your project. And it points out your shortfalls.” (2018.14 Researcher)
Yes, well I would be interested to conduct an additional small-scale qualitative research … I really like the idea. But we’re not pinned down on what we promise here, are we? (2018.15 Researcher)