Community Education for a Dignified Last Phase of Life for Migrants: A Community Engagement, Mixed Methods Study among Moroccan, Surinamese and Turkish Migrants
Abstract
:1. Introduction
- Aims and content of the educational meeting
- Recruitment of participants
- (1)
- How is the community education executed and experienced by participants and educators?
- (2)
- What is the added value of this community education?
2. Materials and Methods
2.1. Design
2.2. Analysis
2.3. Ethics
3. Results
3.1. Characteristics and Reach of the Educational Meetings
3.2. Execution and Experience of the Community Educational Meeting
3.2.1. Experience Measured by the Questionnaire
3.2.2. Type of Information in Combination with the Interactive Method Was New
Interviewer: Do you think the education met the expectations and needs of the people in the room? Respondent: Yes, many things were new. In the beginning, the lady that sat here, said she wanted to know more about organizations and where to go to for help. And also family matters, what they already felt would be coming. (#1, educator).
Interviewer: Did the meeting bring you something new? Respondent: Yes, definitely. The videos were impressive and recognizable. The video in which the children are worried and have to make choices for the parents has stayed with me. That is what was in my mind and it is also important. It was new to watch this and to reflect on it. (#2, participant).
I discussed it elaborately with my family and partner. … They were in shock, because this is not an everyday subject. It is a hard subject and we don’t speak much about the last phase of life. (#3, participant).
Because, normally, education is about breast cancer or menopause. You can laugh about it and make jokes. This time it was really different. It is not really a subject they were waiting for to discuss. (#4, educator).
3.2.3. Overcoming Resistance Towards the Theme
Interviewer: For example, the opinions (of participants) were ”we will see how it will go”, “it is in Allah’s hands, in Allah’s hands” and “there is nothing we can do about it”. Indeed, they throw the towel in the ring again, “Let’s be done with this, it will come as it will.” Educator: Then, I intervene, “Yes we are Muslim, but.” Interviewer: They are not mutually exclusive. Educator: “Keep faith, but Allah doesn’t tell you that you are not allowed to think.” (#5, educator).
Then fear, it is discussed. But, if everyone would have said “I am not anxious”, then the rest would also have said ‘not anxious’. … So I said, “I don’t think about this subject, but I am anxious.” So then you (the participants) will think: “See! Shall I give my opinion?” (#6, educator).
3.2.4. Facilitating and Steering the Discussion
Knowing about how long you still have to live, in the beginning they were like “I don’t want to know that”. But they [the doctors] will tell you about it. That is reality. I think it is important to make them aware about reality. (#7, educator).
I support home care, but I try to not just bring my own opinion, or let it [my opinion] dominate. … But I explained about the possibility of incontinence and the need to be washed by someone else. “Who would you like to take up that task?” “Is it more convenient that a family member or home care worker does it?” Benefits and disadvantages. I told them that there are many possibilities they can make use of, not just the family or informal caregivers. (#8, educator).
That man [a participant] mentioned “culture” … The importance of cultural support in the last phase of life, and that things [should] happen according to culture. … And then I could respond, “That is ok, but what about the opinion of the person concerned?” (#9, educator).
Interviewer: You gave many examples from practice, that is your strength. You also were the first to mention about informal caregivers. … “You are at home with seven, but it will all come down to one person.” … It opens the discussion. (#10, educator).
Educator: What I think is less [convenient], is using devices. … Then I have to look, how do I have to do it? I have to get used to that kind of thing. Interviewer: It is many things at once. Educator: And also with the group, giving the presentation and at the same time. (#11, educator).
3.2.5. Tools for Interaction
Educator: Then everything I had said came back in the videos. They saw a really sick person. They saw the experience. The mother who stood up for her daughter, who had to work continuously. The conflict between the brother and sister. Researcher: I had the feeling it made them pause for thought … Educator: The videos encompass so much information that will come back in real life. (#12, educator).
With those cards, green [cards] and red [cards]. It is quite something, but it makes it a bit more light-hearted and more fun. (#13, educator).
3.3. The Added Value of the Community Educational Sessions
3.3.1. Increase in Knowledge
Interviewer: Was it important for you? Respondent: Yes, there are many things we don’t know about. Interviewer: You mean regarding palliative care? Respondent: Yes, you are sick and you don’t know if any help will come. Interviewer: Home care, for example. Respondent: Exactly, possibility of home care, we don’t know much about it. (#14, participant).
Interviewer: In that time [when her loved one was ill], did you hear anything about palliative care? Respondent: No, In that time you heard nothing. He received radiotherapy, we cared well for him. Interviewer: You didn’t hear about palliative care? Respondent: No never, we heard from Ayisha (fictitious name of educator). Something about helping people in the last phase of life. (#15, participant).
Interviewer: Could you tell me when and how the phase of palliative care starts? Respondent: Yes, it begins with taking good care of someone who cannot recover anymore and good care if someone does not have family. … Interviewer: When exactly do we think about palliative care? Respondent: Yes, in the last phase right? When someone doesn’t have long to live anymore. Or when a physician tells you that you will only have a couple of months to live. Interviewer: What do you mean, how ill? When does it start? Respondent: Yes, in the last phase of someone who is chronically ill. Or someone is anxious and cannot recover anymore. (#16, participant).
3.3.2. More Comprehensive Articulation of Wishes and Needs
Respondent 1: We would like to have a commune, with capacity for people. Respondent 2: For people who are (work) in care can respond to. Imagine, I will become demented and I want to speak Hindu, but you cannot understand me, so we have to pay attention to it. There needs to be attention for that. Respondent 3: And also doing a lot of charity work. Because, in such a commune and there are not enough, we are with a lot. We have to do it with way more people. Respondent 4: But home care Respondent 5: A commune with care Respondent 6: And then everyone can help a bit. Respondent 7: Yes, with cleaning, vegetables, flower, decorating. Respondent 8: You will come and see that others are helping. (#17, group discussion afterwards).
Respondent: Trying to keep living like this and not being a burden to others. I want to keep living a good life, but not become a burden to others. Interviewer: You don’t want others. Respondent: Have to do for me what I cannot do myself. So no resuscitation, or I would want to go immediately. Or I [have to] live, but care for myself. (#18, participant).
Respondent: About the collaboration between elders and younger people, was positive. I can learn something form that, that younger people still treat their elders rightly. Interviewer: And also how they do it? Respondent: I thought it was beautiful to see how people nowadays.. in the past you were obliged to take care of your parents. … Interviewer: So if it would be needed [for him]? Respondent: If it is needed, yes then. I have two daughters, so I hope they will. (#19, participant).
3.3.3. Awareness and Opening Up About Their Own Situations
Interviewer: Was it valuable for you? … Respondent: Yes, you also learn from others and they learn something from you. It is always about experiences. There was also someone who was just in the middle of it … Interviewer: A realistic view on the situation? Respondent: Yes. Interviewer: And that is the added value, why you would rather do it in a group? Respondent: Yes, preferably. (#20, participant).
Then I saw (the video) and thought to myself, when the girl told about how hard it was to bring her mother there (to the nursing home), “I just say it.” We didn’t come (to the educational meeting) for this. … It is a phase of life you forget about. My husband is there (the nursing home) already for so long, 11 years, but he will also. When someone is sick, then it is mourning and that is also a phase of life, a goodbye. I am thinking, “What did I arrange for him?” I didn’t even think about that. (#21, group discussion afterwards).
3.3.4. Differing Opinions About the Moment of Talking About the Last Phase: Right Now, or In the Future
Respondent: I told my brother and sisters [about my own funeral], “Let my wife decide on how she wants to do it” I don’t want others to meddle. I welcome all help, but I want them to do it like she wants it to. Interviewer: This is about the funeral? Respondent: Yes. Because now, there are so many different traditions. (#22, participant).
No, with someone who is in their last phase, you should not come up with these subjects. When someone doesn’t start about it themselves, others should not bring it up. (#23, participant).
The moment you encounter it [the last phase of life], then explain everything clearly. What would be the possibilities and effects of certain decisions. All that kind of things. It can be said, it should not be concealed. (#24, participant).
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
Appendix A. Questionnaire
Questionnaire Prior to the Meeting
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- How old are you? …………. years.
- I am a
- □
- man
- □
- woman
- 3.
- What is your religion?………..…………..…………..…………..…………..…………..…………..………………………..
- 4.
- In which country were you born?…………..…………..…………..…………..…………..…………..…………..………………………..
- 5.
- In which country was your father born?…………..…………..…………..…………..…………..…………..…………..………………………..
- 6.
- In which country was your mother born?…………..…………..…………..…………..…………..…………..…………..………………………..
- 7.
- Which education did you take?
- □
- None
- □
- Primary school
- □
- Secondary school
- □
- Intermediate professional education
- □
- Higher professional education
- □
- University
- 8.
- What kind of job do you do?………………………………………………………………………………………………………………
Appendix B. Interview Guides
B.1. Individual Interview with Participant Prior to the Meeting
- Age:……………………………………………………………………………………………………………………
- Sex:……...……………………………………………………………………………………………………………
- Religion:……………………………………………………………………………………………………………………
- Country of birth:……………………………………………………………………………………………………………………
- Country of birth father:….………………………………………………………………………………………………………………
- Country of birth mother:……………………………………………………………………………………………………………………
- Educational level:……………………………………………………………………………………………………………………
- Occupation:……………………………………………………………………………………………………………………
- 1.
- Did you talk with others about the last phase of life before?Probe:
- What did you talk about?
- Do you know someone who is in his/her last phase of life?
- 2.
- Do you think it is useful to talk about the last phase of life? Why is it, or isn’t it?
- 3.
- What do you know about palliative care? What is palliative care according to you?Probe about:
- a.
- Do you know the goal of palliative care?
For example: improve quality of life, relief suffering, minimize symptoms- b.
- When does palliative care (or the last phase of life) start?
For example: Once you get diagnosed with a life-threatening disease- c.
- What type of care do you expect palliative care to encompass?
For example: medical, social, psychological and spiritual care
- 4.
- Do you know about which choices you could encounter in the last phase of life?
- 5.
- Do you know which type of care you could use in the last phase of life?
- 6.
- Do you know about what would be important for you in the last phase of life? Probe about what would be important.
- 7.
- Do you know who you would like to take care of you? Probe about who and why.
- 8.
- Did you talk about the last phase of life before with a care professional?
B.2. Individual Interview with Participant 2–3 Weeks Afterwards
- How did you experience the educational meeting?
- Did it do you good to talk about this subject with other participants?
- 3.
- Did it bring you new perspectives? (effectivity)
- 4.
- Could you tell me what palliative care is?Ask additional questions:
- a.
- Do you know the goal of palliative care?
For example: improve quality of life, relief suffering, minimize symptoms- b.
- When does palliative care (or the last phase of life) start?
For example: Once you get diagnosed with a life-threatening disease- c.
- What type of care do you expect palliative care to encompass?
For example: medical, social, psychological and spiritual care
- 5.
- Do you know about which choices you could encounter in the last phase of life? For example: wanting to know about diagnose or prognosis, who you would like to take care of you (family or others), who should take decisions for you in case you cannot do it yourself, morphine or palliative sedation, resuscitation, continuation of nutrition, euthanasia, religious aspects or rules, how to say goodbye, cremation or funeral, legacy.
- 6.
- Do you know which type of care you could use in the last phase of life? For example: home care, nursing home, informal care support, personal budget (PGB), hospice (last weeks), 24-h care at home (last weeks), professional translation service.
- 7.
- Do you think it is useful to talk about the last phase of life? Why is it, or isn’t it?
- 8.
- Do you know what would be important for you in the last phase of life?
- a.
- What would you need?
- b.
- Would you want family members to take care of you? Why, or why not?
- 9.
- Did you talk about the last phase of life with someone else after the educational meeting? Why, or why not?
- If so.
- How did you experience it? What did you discuss?
- With whom did you talk about it?
- If not, what would be helpful to do it?
- 10.
- Did you discuss your wishes with a physician or other professional caregiver? Why, or why not? What did you discuss?
B.3. Group Discussion with Participants Prior to the Meeting
- What do you have in mind when you think about the last phase of life? Which subjects are you concerned with?
- What do you expect to hear in this meeting today?
- Do you ever talk with others about the last phase of life? What do you discuss?
B.4. Group Discussion with Participants Afterwards
- What did the meeting bring you? What was valuable?
- What did you experience as pleasant? Was there also something you experienced as difficult?
- What would you like to know more about?
B.5. Interview with Educator
- How did it go?
- What did you experience as pleasant?
- What did you experience as difficult?
- What the participants expected
- What needs participants had
- i.
- Information needs
- ii.
- Subjects they wanted to discuss
- Participation level of participants
- i.
- Feeling comfortable, daring to share their opinions, effect of the interactive elements we used
- ii.
- Understanding of provided information among participants
- 4.
- Why did you execute the meeting the way you did it? Discuss notable observations.
- 5.
- Which themes provoked discussion among participants?
- 6.
- Do you have additional things you would like to mention about the educational meeting and your experience?
- Age: …………………………………………….
- Sex: …………………………………………….
- Religion: ……………………………………………….
- Country of birth: ………………………………………….
- Country of birth mother: ……………………………………….
- Country of birth father: ………………………………………….
- Occupation: ………………………………………….
- Educational level: …………………………………………….
Appendix C. Observation Checklist
Researcher and Research-Assistant do This Together
- Date: …………………….
- City: …………………….
- Place (mosque, nursing home etc.): …………………….
- Target group (ethnic background): …………………….
- Amount of participants: …………………….
- Language: …………………….
- -
- Correct use of PP-presentation
- -
- Are the most important subject addressed completely? (see schedule)
- -
- Is the order of the script followed?
- -
- Stimulation of conversation among participants
- ○
- How does the educator do this?
- ○
- Do participants get enough time to think about it?
- ○
- Do educators address several perspectives?
- -
- Are participants engaged in the conversation? Why/when are they and when aren’t they?
- -
- Do the participants seem to be comfortable?
- -
- Do they participate during the interactive parts?
- -
- Do the participants seem to understand the information? Do they ask probing questions?
- -
- Do the subjects of the educational meeting speak to the participants and what they would like to discuss about the last phase of life themselves?
- -
- Are there additional themes the participants start to discuss, or would like to discuss?
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Method | Who Is Studied | What It Measures or Explores | Related Research Question | When | Number of Participants | Duration (min) | Place |
---|---|---|---|---|---|---|---|
Semi-structured Interview | Educator | Experience, execution | 1, 2 | Directly after the educational meeting | 8, 1 per group | 30–45 | Place of educational meeting |
Semi-structured Interview | Participant | Level of knowledge, wishes regarding the last phase of life, insight in the importance of talking about the last phase of life | 2 | Before the educational meeting | 8, 1 per group | 20–30 | Place of educational meeting |
Semi-structured Interview | Interviewed participant (see 2) | Experience, level of knowledge, wishes regarding the last phase of life, insight in the importance of talking about the last phase of life | 2 | 2–3 weeks after the educational meeting | 8, 1 per group | 30–50 | At home, community center or by phone |
Questionnaire | Participant | Experience of provided information and interactive elements, demographics, reach | 1 | Partly before and partly directly after the educational meeting | All participants | n.a. | Place of educational meeting |
Observation | Participant and educator | Responses and interaction of participants, execution by educator | 1 | During the educational meeting | All educational sessions | 120 | Place of educational meeting |
Group acquaintance | Participant | Familiarity with subject: knowledge about palliative care and experience with talking about it. | 2 | Before the educational meeting | 8, 1 per group | 10–15 | Place of educational meeting |
Group evaluation | Participant | Experience, experienced added value | 2 | Directly after the educational meeting | 8, 1 per group | 10–15 | Place of educational meeting |
Nr. | Age | Sex | Country of Birth | Educational Level | Religion |
---|---|---|---|---|---|
#1 | 41 | F | Turkey | University | Islam |
#2 | 36 | F | Morocco | Intermediate professional education | Islam |
#3 | 47 | F | Morocco | Intermediate professional education | Islam |
#4 | 69 | F | Suriname | Higher professional education | Hinduism |
#5 | - | F | Suriname | University | Evangelical brotherhood church |
#6 | 57 | F | Suriname | University | Catholicism |
Ethnic Background | Amount of Participants | Age Range | Female/Male Ratio | Used Language for Execution | Education Level Median (IQR of 6p-Likert Scale) | Place | |
---|---|---|---|---|---|---|---|
#1 | Turkey | 9 | 54–60 (+ one of age 16) | 9/0 | Turkish | 1 = Primary school (3) | Home care organization |
#2 | Turkey | 8 | 51–76 | 8/0 | Turkish | 1 = Primary school (0) | Home care organization |
#3 | Morocco | 14 | 36–58 | 14/0 | Dutch | 3 = Intermediate professional education (1) | Mosque |
#4 | Morocco | 14 | 40–73 | 14/0 | Berber/Arabic | 1 = Primary school (1) | Nursing home |
#5 | Suriname-South Asian | 21 | 60–90 | 16/4 | Dutch | 1,5 = Primary school/secondary school (1) | Hindustani-elderly commune |
#6 | Suriname-South Asian | 27 | 61–83 | 21/6 | Dutch | 2,5 = Secondary school/Intermediate professional education (2) | Community center |
#7 | Suriname-African | 21 | 59–77 | 11/1 | Dutch | 4 = Higher professional education (0) | Community center |
#8 | Suriname-African | 6 | 66–80 | 2/4 | Dutch | 4 = Higher professional education (2) | Surinamese-elderly commune |
#9 | Suriname- African | 21 | 60–88 | 19/2 | Dutch | 3 = Intermediate professional education (2) | Community center |
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de Voogd, X.; Willems, D.L.; Onwuteaka-Philipsen, B.; Torensma, M.; Suurmond, J.L. Community Education for a Dignified Last Phase of Life for Migrants: A Community Engagement, Mixed Methods Study among Moroccan, Surinamese and Turkish Migrants. Int. J. Environ. Res. Public Health 2020, 17, 7797. https://doi.org/10.3390/ijerph17217797
de Voogd X, Willems DL, Onwuteaka-Philipsen B, Torensma M, Suurmond JL. Community Education for a Dignified Last Phase of Life for Migrants: A Community Engagement, Mixed Methods Study among Moroccan, Surinamese and Turkish Migrants. International Journal of Environmental Research and Public Health. 2020; 17(21):7797. https://doi.org/10.3390/ijerph17217797
Chicago/Turabian Stylede Voogd, Xanthe, Dick L. Willems, Bregje Onwuteaka-Philipsen, Marieke Torensma, and Jeanine L. Suurmond. 2020. "Community Education for a Dignified Last Phase of Life for Migrants: A Community Engagement, Mixed Methods Study among Moroccan, Surinamese and Turkish Migrants" International Journal of Environmental Research and Public Health 17, no. 21: 7797. https://doi.org/10.3390/ijerph17217797