Palliative Care Needs Assessment in the Population Living in Mayotte: SPMAYOTTE, a Qualitative Study Conducted with 62 Patients, Caregivers and Healthcare Professionals
1.1. Cultural Aspects
1.2. Health Aspects
1.3. A Serious Delay in Palliative Care
2. Materials and Methods
2.2. Setting and Selection of Participants
- Patient survey: To be designated by one of their healthcare practitioners as being in a palliative situation; have a level of understanding deemed sufficient to participate in the study and be able to give consent; no age criteria or specific pathology.
- Family survey: To be nominated by a recruited patient and identified by the patient as a resource person; have a level of understanding deemed sufficient to participate in the study and be able to give consent.
- Healthcare professionals’ survey: Should have usually managed a patient included in the study or have expressed a wish to participate in the study as they are regularly confronted with this type of situation (without necessarily having a patient included at the time of the study); have given their consent to participate in the research.
2.4. Data Collection
- Patient survey: individual interviews, in the patient’s usual place of residence;
- Family survey: individual or group (focus group) interviews, in the usual place of residence;
- Healthcare professionals survey: individual or focus group interviews, in the usual place of work.
2.5. Data Analysis
3.2. Results of the Study
3.2.1. The Question of Administrative Status and Non-Affiliation
“F: […] we thought it was possible to operate. I: was it the doctor in the Comoros who said it would be better for her to come here? F: yes, he said it would be better to move her elsewhere, to a place where there are many doctors with skills…”(Interview F3)
“F: It’s culturally linked, we know that in Mayotte, when you’re a foreigner, especially when you’re in an illegal situation, it has a strong impact on the relationship that people have with you.”(Interview F7)
“D: But then we have huge needs in community care, enormous. And that’s where we’re going to have to try to make things clear, because there’s a double standard between those who have welfare and those who don’t. So, if they have, well, there will be returns home that are not perfect but that we can manage. But if they don’t have welfare, it’s… we let them get into really… disastrous situations… and it’s catastrophic…”(interview S3)
3.2.2. Management of the Disease
The Care Process: Difficulties in Community/Hospital Coordination and the Home Care Network
Medical and Technical Resources
Diseases Treated at Advanced Stages, with Pain as the Main Symptom
“N: it’s patients who come in the terminal stage and who are not from here and are not followed up here, but who come from the Comoros, and there they are already in an advanced state.”(interview S19)
3.2.3. Beliefs and Culture in Mayotte
Religion and Culture Are Not an Obstacle to Care
A High Cultural Impact on the Understanding of the Disease and the Limitations of Interpretation
“N: as soon as they hear the word “cancer”, they already think of death. Because the diagnosis is made very late, maybe that’s why they have in mind that cancer equals death or serious illness equals death. We try to explain it to them, but […] they say “No, the doctor never told me that”, whereas often the family comes in and says: “Yes, yes, we know about it.”(interview S1)
“D: I find that they don’t ask for anything, it’s just culturally, people don’t complain […] It’s obvious that they don’t ask for anything, after that they have needs for almost everything, since there is almost nothing, in palliative care.”(interview S3)
Families, Privileged and Very Involved Interlocutors
“N: There are families […] who say ”It’s better you don’t tell the patient”. So most of the time, it’s the family that knows but not the patient himself.”(interview S1)
“P: I don’t have a sister, so I don’t have anyone to look after me, only my son does what he can, he’s a schoolboy and between school and looking after me it’s a bit of a struggle, I mean… F: I stay with my mother and soon I’m going to start preparing for the gendarme exam…”(interview P4)
A Perception of Death That Is Far Removed from the “Classic” European Representations
3.2.4. The Health Professionals’ Proposals
- Having a “medical referent” role. This role would require a high degree of availability both to patients and their families and private healthcare providers.
- Whatever the social situation of the patients may be (affiliated or not to the social security).
- Having a coordinating role in care to avoid any break in the care plan, to enable better interaction between the hospital and community healthcare providers (nurses, doctors, social workers, etc.). For example, it was proposed that a doctor from the palliative care structure should be present as soon as the incurable disease was announced.
- A multidisciplinary team with a role in supporting the healthcare teams in their decision making by taking part in the definition of the care project, participation in staff discussions and ethical aspects.
- Suggestion to create a home hospitalisation service as a complement, which would also fulfil the condition of receiving patients not affiliated to the social welfare system, thus a public structure.
- Creation of dedicated hospital palliative care beds in a department where the care team was specifically trained and equipped to accompany patients.
- Providing enhanced training in several areas (palliative care, pain management, delivering bad news, interculturality and translation).
4.1. The Problem of Legal Status and Access to Social Welfare
4.2. Management and Care Process
4.2.1. The Diseases
4.2.2. Care at Home
4.2.3. Hospital Care
4.2.4. The Importance of Traditions, Beliefs and Culture in Care
4.3. Public Feedback
4.4. Limitations and Strengths of the Study
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
|Patient Interview Code||Age (Years)||Gender|
|Access to Social Welfare |
|Pathology||Patient Interview(Yes/No)||Family Interview Code (Number)||Proximity Tie||Nationality|
|-||86||M||Yes||Cancer (prostate)||No (died)||F1 (3)||Children||F|
|-||72||F||No||Cancer (ovaries)||No (refusal to register)||F3 (1)||Daughter||C|
|P4||42||F||Yes||organ failure||Yes||F4 (1)||Spouse||F|
|-||75||M||Yes||Cancer (facial)||No (no capacity)||F5 (1)||Son||F|
|-||6||F||Yes||Polymalformat-ive syndrome||No (child)||F6 (1)||Mother||C|
|P7||51||M||No||Cancer (stomach)||Yes||F7 (2)||Daughter, Son-in-law||C|
|P8||46||F||No||Cancer (no known primitive)||Yes||P8 (1)||Son||C|
|P9||21||F||No||Cancer (no known primitive)||Yes||/||/||/|
|P10||29||F||No||Cancer (ovaries)||Yes||P10 (2)||Sister-in-law, friend||F|
|P11||78||F||No||Cancer (no known primitive)||Yes||F11 (1)||Grand-daughter||C|
|P12||41||M||No||Cancer (colon)||Yes||F12 (1)||Niece||C|
|P13||43||F||No||Cancer (colon)||Yes||F13 (1)||Sister||F|
|Patient Interview Code||Healthcare Professionals Interview Code||Interview Type||Participants||Mode of Practice|
|P1||S1||Focus group||Nurses (2), Physiotherapist (1)||community|
|P2||S2||Focus group||Nurses (2), Doctor (1)||community|
|P3||S3||Focus group (dyad)||Doctors (2)||Hospital|
|P5||S5||Focus group||Nurses (2), Nursing assistants (3)||community|
|-||S14||Focus group (dyad)||Doctors (2)||Hospital|
|-||S15||Focus group (dyad)||Nurse (1), Nursing assistant (1)||Hospital|
|-||S19||Focus group (dyad)||Nurses (4), Doctors (2), Nursing assistant (5), Physiotherapist (1), Psychologist (1), Manager (1)||Hospital|
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|Patients (9) for a Total of 13 Identified Patients|
|Age (years)||Average: 42|
|Welfare affiliation||Yes: 2|
Organ failure: 1
|In total: 13 situations were identified and 9 interviews were conducted. The decision not to interview included three patients (a young child who could not make himself understood, a patient who could not be heard due to a tumor of the facial sphere and one patient refused to be recorded but agreed to be included so that his family could be interviewed). One patient had died after the first consent; his family and healthcare providers were interviewed.|
|Families and other caregivers (15)|
|Relation||Children: 8, Spouse: 1, Brother or sister: 2, Other: 4|
|Nationality||French: 8, Comorian: 7|
|Healthcare professionals (38)|
|Interviews||Focus group: 7 (including 3 dyads), Individual: 7|
|Professions||Nurses: 14, Doctors: 10, Nursing assistants: 9, Physiotherapists: 2, Psychologists: 2, Managers: 1|
|Mode of practice||Hospital: 25, Community healthcare settings: 13|
|Patient and Family Survey|
|Healthcare Professionals Survey|
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Benoist, R.; Walker, P.; Allain-Baco, K.; Aubry, R. Palliative Care Needs Assessment in the Population Living in Mayotte: SPMAYOTTE, a Qualitative Study Conducted with 62 Patients, Caregivers and Healthcare Professionals. Int. J. Environ. Res. Public Health 2022, 19, 3540. https://doi.org/10.3390/ijerph19063540
Benoist R, Walker P, Allain-Baco K, Aubry R. Palliative Care Needs Assessment in the Population Living in Mayotte: SPMAYOTTE, a Qualitative Study Conducted with 62 Patients, Caregivers and Healthcare Professionals. International Journal of Environmental Research and Public Health. 2022; 19(6):3540. https://doi.org/10.3390/ijerph19063540Chicago/Turabian Style
Benoist, Raphaël, Philippe Walker, Karine Allain-Baco, and Régis Aubry. 2022. "Palliative Care Needs Assessment in the Population Living in Mayotte: SPMAYOTTE, a Qualitative Study Conducted with 62 Patients, Caregivers and Healthcare Professionals" International Journal of Environmental Research and Public Health 19, no. 6: 3540. https://doi.org/10.3390/ijerph19063540