Life with Acute Myeloid Leukaemia

A research on AML patients, their significant others
and the Health Care Professionals treating them.

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Request a deep dive into anthropological insights how the AML journey is experienced by patients, doctors, nurses and relatives.

The purpose of the research is to provide doctors and nurses  working within the field of AML with an in-depth insight into the lived life with AML which can be valuable in their work with both patients and relatives. 

Learn more about the insights in the video and download the report. You can also place a request to be contacted about a presentation in your clinic.

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“Having acute myeloid leukaemia,
it’s like pressing pause on life.

– male patient

“Images taken in Amager”

The less obvious insights in how to improve
the experience for AML patients

You might recognize …

Read an ultra short version of the human path into a better patient experience.

We have collected stories and insights from the AML journey that goes a bit behind the expected.

What makes these observations unique is actually how common they are: Every treatment has its own story, but many of them represent the same sometimes-overlooked needs.

Click on the insights above to explore whether you can recognize the underlying needs among patients, relatives, doctors and nurses.

ABOUT THE RESEARCH 

The purpose of this research has been to generate new insights into how AML patients live and experience life with AML to better understand the needs these people have and face in their everyday life. The report tells the story of people living with AML in their own words. All the interviews have focused on experiences, feelings, motivations and thoughts on what it is like to live with AML, to live with someone who lives with AML and to work within the field of AML.

The hope is that the report will support the doctors and nurses with a deeper, anthropological understanding of the patient group to support their work with both patients and their relatives. 

The anthropological research was conducted in May – October 2019 and is based on 17 interviews. In total, 6 haematologists, 6 patients, 3 significant others and 2 nurses from across Sweden have participated. All interviews have been explorative in-depth interviews following a semi-structured question guide allowing the participants to express their experience with their own words. For the patients and relatives all interviews have taken place in their homes. The doctors and nurses have been interviewed in their clinics.

Get an anthropological insight into how the AML journey is experienced from the perspective of the patients, relatives, doctors and nurses.

Download Report
Request Presentation
Give Your Consent & Stay Updated
The criminal AML patient
One patient told us about his experience of feeling like a criminal while being in isolation at his treating hospital. "It's like wearing a foot chain. You feel like a criminal being punished".
Your key takeaway:
Helping AML patients find new ways to cope with the physical and mental aspect of isolation can truly improve their experience.
That cutlery can become part of the cure:
One of the relatives in the research would go to see her husband daily while he was hospitalized. Every day, she would spend hours cooking before leaving the house and she would even bring her own cutlery to the hospital; “I brought him all the food, it was also our cutlery from home that he was using. Then it felt as much like home as possible”.
Your key takeaway:
Supporting the patients relationship with their relatives can give them strength and energy to handle their “new normal”
How one blue dot can make the doctor better understand a patient
One of the participating doctors explained about an episode with a patient who had illustrated her life on a piece of paper by drawing white dots all over the page. In the middle of the page, there was one blue dot, that symbolized her meeting with the doctors and the hospital. “That was very important to me, because we think we are so important, but for the patients we are just one part”.
Your key takeaway:
Identifying new ways to bridge the understanding of the patients life outside the hospital with their treatment inside the hospital is valuable in a treatment strategy.
When avoiding the woods can be a strategy:
A patient told how she had heard her doctor advise her not to go into the woods in her neighborhood, as it could be dangerous for her condition because of the possible of getting infected by bacteria. This fear of bacteria however also affected how the patient viewed upon her neighbors as they often wandered around in woods. “When my neighbours stopped by, I wouldn't let them in and I wouldn't hug them".
Your key takeaway:
Patients needs help and information to handle three aspects of isolation: Social isolation. Physical isolation. Fear of no isolation.
Doctors working for weddings:
The interviews with the doctors showed that the patients were not viewed as sick bodies that needed treatment, but much more like persons whom you would build relationships with. The most doctors follow their AML patients for years – and many even longer than what the healthcare system suggests. Some of these doctor-patient relations grow into strong and lifelong friendships:   “Five years we follow people obligatory, but some people have the wish to come for more years to feel safe. I’ve made many friends like that, I have many patients who even come to my home, and I go to their weddings. It feels nice to do something nice”.    
Your key takeaway:
If it’s possible to treat the relationship with the patient as a strong alliance early on in the process, it can be a mutual advantage.
We are more than happy to come to your clinic and present the findings and results from the research to you and your colleagues and discuss the potentials of the insights. To hear more about the presentation and discuss a meeting format that may be suitable at your clinic, please enter your details beside, and a representative from Astellas will contact you by phone to schedule a meeting.
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