Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers, 2022, Duncan et a

[mango]

Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers

Therese Scott Duncan, Jon Engström, Sara Riggare, Maria Hägglund, Sabine Koch

Abstract

Background:
Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce.

Objective:
We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better.

Methods:
We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyze the focus group interviews.

Results:
A total of 14 patterns of empowering behaviors were identified that were characterized by several exploratory and influencing activities performed by the participants. The participants expressed a desire to be more active in their care than what is expected and supported by health care professionals. The participants also desired better support for activities imposed on them by health care professionals.

Conclusions: To enable a transformation of the health care system to better support self-empowering behaviors, there is a need to develop self-management approaches from a patient and informal caregiver perspective.

Keywords
behaviors; chronic conditions; model of illness-related work; empowerment; self-management

https://jopm.jmir.org/2022/1/e39174

 

[mango]

Here's an interview with one of the co-authors (in Swedish):

Karolinska Institutet: Ny publikation om spetspatienters egenvård- ur deras eget perspektiv
https://ki.se/lime/ny-publikation-om-spetspatienters-egenvard-ur-deras-eget-perspektiv

New publication on expert patients' self-care - from their own perspective

On November 16, 2022, a new study on expert patients, "Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers" was published in the Journal of Participatory Medicine. One of the co-authors, Sara Riggare, also a expert patient and researcher, is interviewed here about the study.

What are the main results?

The study focuses on expert patients, i.e. patients and relatives who know, can and want more and often do more than the health care system expects. Usually when research examines the behaviours of patients and relatives, it is done from the perspective of health professionals. This is one of the few studies that examines patients' self-care and self-empowering behaviours from the patients' own perspective and it shows a diversity of activities, roles and skills that patients and relatives use. The main conclusion is that the research community more generally needs to become more aware of these issues and that patients and relatives are part of a system that is not based on their needs despite the fact that they are actually the main users of the system.

Why are the results important?

We hope that our research findings can empower patients and relatives, as well as the public at large, by showing that they are not alone in the - often very frustrating - situations that the healthcare system puts us through.

How could your study affect the treatment and care of patients?

We hope the study can support and hopefully accelerate the shift in healthcare towards more person-centred and personalised care.

How did you conduct the study?

The study was conducted in Sweden with patients and relatives representing a wide range of backgrounds, ages, employment, disease experience and length of experience as a patient or relative. We combined individual interviews with focus groups to gain both breadth and depth in the information collected.

What are the next steps in your research?

In the spring of 2023, the first author of the paper, Therese Scott Duncan, will defend her doctoral thesis in this area. It will be the first PhD thesis in the world based on research by, with and about expert patients. I am very much looking forward to it!

 

[rvallee]

Self-management of chronic illness is not empowerment. It's pretty much the exact opposite, it serves to trivialize and as an excuse to do nothing.

Empowerment means power. We have no power. In the context of healthcare, we have negative power, we are constantly bullied and talked over, we can't even argue the facts because the facts are disputed, debated endlessly by people who know nothing about us and have no stake in anything that happens to us. Power means influence, being able to affect outcomes, to move and assign resources where they are needed.

It's insulting to pretend that blatant tokenism is empowerment.

 

[bobbler]

This one is worth a EDIT: closer read when I have more time and brain but certainly doesn't seem to be the worst on the subject, with the potential to be a move forward - I say this with so many caveats not having read the details of what details they gleaned and conclusions they drew from that (given as we know these can often be pretty removed)

In the discussion there is the following, which feels more respectful - albeit familiar buzzword language I've seen elsewhere (but guess that is par for the course to get read) - than others in tone and content:

Today, patients and informal caregivers are part of a system that is not based on their needs; yet they are the main users. However, their behavior might differ depending on whether they are early adopters or late majorities when it comes to behavioral changes. Behaviors performed by early adopters are important for the development of self-management approaches as peers tend to follow later and make use of these solutions. To enable a transformation of the health care system to support patient empowerment and empowering behaviors, there is a need to develop solutions from a user perspective. This will increase the use of patient self-management and improve health care toward a more person-centric system.

And the methodology would be worth a read, because if it is on the right track (which it feels more so than some others), then picking out where it has been good is surely a worthwhile exploit.

If there really is something that could be starting a shift to noting that patient-centric = top-down from patients rather than writing someone's name on your generic worksheet and getting your favourite patient to sit on a talking heads box-tick fait a compli patient involvement thing then brilliant. We need to start working out what roadmaps might look like.

As we've seen there have been issues with some claiming they want to involve us then being very selective about only the most compliant and fake excuses to exclude those who might not be yes men or who might dare to say what is needed (not impolitely but to some anything that isn't favourable as feedback is contrued as that). I can't help but wonder whether there is some benefit that this is being done including ME but not making us the only condition in the research - as I wonder whether having tht approach to so many conditions might reveal that as an attitude issue not of the patients but those claiming to want to work with them etc.

Edit: when you add in looking at some of the tables more closely then this could potentially be useful for noting the term of activist is both misused in certain contexts as 'a bad thing' and something that needs to be actively sought/considered/not excluded at least (along with other types, dependent on knowledge needed) - where the definition appropriate - in designing services and solutions

The analysis of the interviews resulted in 11 categories: self-care expert, academic, patient researcher, tracker, innovator, entrepreneur, communicator, mentor, health care coordinator, health care partner, and activist (see the white boxes in Figure 2). From the focus groups, 3 new exploratory behaviors were elicited: knowledge seeker,coping expert, and exposed (see gray boxes in Figure 2).

 

[mango]

Self-management of chronic illness is not empowerment. It's pretty much the exact opposite, it serves to trivialize and as an excuse to do nothing.

Are you commenting on the study or on the word "empowerment"?

Riggare has done some really great and important work as an expert patient, as well as for and about expert patients ("spetspatienter") here in Sweden. Her articles are well worth a read.

One easy way to get more familiar with her work and her perspective on expert patients is to follow her on Twitter:
https://twitter.com/SaraRiggare

This website is very informative too:
https://www.spetspatienterna.se/in-english/

*A lead user patient (spetspatient in Swedish) is a patient or family member who take a larger responsibility for their own health and well-being. They meet their health related challenges in a constructive and knowledge-based way, while taking their physical and mental abilities as well as capacity into account.

Lead patients make use of their own experiences to improve healthcare, on all levels of the system, for the sake of both themselves and other patients. They often meet their challenges in a creative manner and we think that they can be seen as innovators. Often you do not become a lead patient by choice, it is something that you do to be able to manage and navigate the complex healthcare system.

 

[rvallee]

Are you commenting on the study or on the word "empowerment"?

The use of the word empowerment in particular, but also in general the idea that self-management amounts to anything other than negligence leading to needless suffering and early death for millions. We do not "self-manage" this because it's the best way, a good way, or any way to deal with this. We endure because there is nothing else. This is negligence, a true dystopian nightmare. There's nothing inspiring or cutesy about it, it's lived horror.

In fact we need actual empowerment. This is what would change everything, the premise of nothing about us without us, which medicine has clearly and wholly rejected. There is simply no overlap between enduring illness as a result of negligence and pseudoscience, and empowering patients in a meaningful way that leads to better real life outcomes.

Maybe it's only an issue of wording, and maybe some of it is lost in translation, but words being detached from their meaning, words with multiple ambiguous meanings deployed to mislead on purpose and other issues with basic vocabulary are extremely problematic in medicine, so it's especially important to not fall for the same trap that condemned us.

I see this in a similar sense as articles published over the decades about us, that "things are changing". No, they were not, and pretending was actually part of the problem, just as pretending that having to endure chronic illness and all its consequences has anything to do with empowering patients, rather than criminal negligence. The power imbalance for us is so total and what's needed is so far above this that it ends up doing more harm than good to pretend otherwise.

 

[Sean]

Self-management of chronic illness is not empowerment. It's pretty much the exact opposite, it serves to trivialize and as an excuse to do nothing.

It's one of those things that can be used either way. Done well and for the right reasons it can be good. Done badly and for the wrong reasons it can be a disaster.

 

[mango]

I have to admit I'm finding some of the comments in this thread confusing.

In short, this is about changing unhelpful and harmful power structures.

For years Riggare has been putting her words into action—showing that she means what she says by actively doing it herself; as a patient, expert patient and researcher.

A major part of Riggare's work is about finding ways to increase patient participation in order to improve healthcare and patient safety, both on an individual and system level. It's about challenging power structures and urging healthcare professionals to start recognising and respecting patients' knowledge and agency. It's about consent and better informed decisions.

It's about patient participation and collaboration. It's about recognising how valuable patient researchers can be.

It's about the urgent need for the harmful power structures to change, for the broken system to learn to welcome knowledgeable patients as a valuable resource and to learn from them, to include them, and to put their knowledge and lived experience to use in helping shape better and safer healthcare for everyone.

It's about giving power and agency back to the patients, making them (us!) an active part in changing how the system works. And so much more.

For those of you not already familiar with Riggare's work, here are a list of some of her publications:
https://www.riggare.se/my-publications/

 

[Ravn]

I have to admit I find the language of social science papers off-putting though this wasn't anywhere near as bad as most. And the term empowerment sets my teeth on edge.

However, in this case empowerment is best understood as patients fighting dis-empowerment.

This paper is not about ME, interviewees had a wide variety of chronic illnesses. There was at least one with ME but many of the others had entirely non-contested illnesses at least some of which do have treatments. So this shouldn't be read through a narrow ME lens.

But even for this wider group with mostly uncontested illnesses the paper describes paternalistic power structures weighted against patients that often hamper patients' efforts to have some control over the management of their own illness.

Admittedly I've never quite understood the practical purpose of papers like this. I have a feeling they don't get read much outside a narrow circle but if I'm wrong and they do have an impact I wouldn't be worried about this one at all. It reads like a fair description of what patients have to live with.

Published in the Journal of Participatory Medicine.

 

[bobbler]

It's one of those things that can be used either way. Done well and for the right reasons it can be good. Done badly and for the wrong reasons it can be a disaster.

To use a wildcard to try and bring light to this (in the medical context) there was a BBC travel show bit on a DJ who had recently been diagnosed with diabetes 1 going to Ibiza - and all the difficulty involved with combining travel with 'self-management' : https://www.bbc.co.uk/iplayer/episode/m001g04p/the-travel-show-49-ibiza-vs-type-one-diabetes
the segment is at 1min in

I think that looking at the equipment this gent had such as the continual glucose monitor which he could use his phone to track his levels etc and obviously the proper treatment and medication and understanding of this condition scientifically and medically to date did have to combine with his own 'self-management'.

It's quite interesting when you look at it through the lens of ME, because he notes early on that routine has been pretty key in managing the condition but obviously travel makes that impossible - at that point I probably inserted my own assumptions such as 'because your body itself goes more haywire just from the exertion of different wake-up times, exertions, temperature, rest quality and so on'

EDIT: but obviously he had treatment and tools to make it more possible (whereas indeed we've been undermined even in our own scratching round attempts to limit harm and treatment to help us is a laugh)

It also gave me one of those moments where you think of how I can have days where I struggle to wake and even then move, and how far diabetes has come if you potentially imagine understanding from the dark ages if noone ever investigated and just looked at 'behaviour' from a rather biased and unkind outsiders perspective.

Many angles in the discussion/to think of here in relation to this sort of thing, such as the need/want/expectation to have a life and developing solutions that make that more possible rather than just self-management instruction being to 'live within a box you can manage without these tools' (the monitor on your arm some get, whilst others are still stuck with the finger prick every so often method and instruction on how to use routine and 'advice on behaviour').

I'm intrigued whether there might have been historically or even now a tendency for patients who didn't control well to get the blame rather than it be seen as how treatment needed to update to the needs of the patient - or such issues being red flags that not all diabetes is as straightforward as some etc.

So the term self-management is hugely loaded depending on who it is used by and their attitude ie whether they intend to 'make it more manageable for all needs out there in the world and are interested in those who have more difficult conditions or lives that mean it can't bend to strict regimes suggested' or just use it as a 'responsibility: that's your bit argument'.

 

[Milo]

Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment

The choice of words used in the abstract stink, from where I am at. Basically you are empowered if you are compliant to treatment- 2 opposing concepts in my view. You are empowered if you are self managing successfully and if you have "gained power" over your disease. What happened to those whose disease won? Loser? Non-compliant? Must be their fault? Didn't do it right? Didn't have the right attitude? Didn't have money to pay for extra services to manage the disease (physio, massage, whatever) ?

Self-management of chronic illness is not empowerment. It's pretty much the exact opposite, it serves to trivialize and as an excuse to do nothing.

I get what you are saying but would suggest that "an excuse to do nothing" is from the health care professionals or decision maker viewpoint. They feel that self-management is everything- and basically built entire patient curriculums on how to manage illness, and it has taken so much space that there is no room (or money) at all for biomedical care. And the decision makers and funders? They love it. It costs much less than offering drug therapies to the patients, particularly in the era of biologics, where a course of treatment would easily cost 100,000$ or more.

Empowering patients is very much a psycho-social and holistic conceptualization of chronic disease management, and it stinks.

 

[Trish]

I have read the whole paper. It's a bit hard to read because I find the allocation of single words to describe different aspects of the way we manage illness rather trite and unhelpful, but I guess that's how social scientist academics work. I prefer reading the patients' and carers' words unfiltered.

Having said that, I don't really understand why some comments are being so critical. I think we need to be careful of jumping on words in abstacts we don't like and reacting without reading the whole context and intention of the research.

The whole point of this paper is to step away from clinician led discussion of patient empowerment and hand it back to patients to tell from their point of view. Surely that's a good thing.

They specifically recruited people who classified themselves as expert patients - ones who had been able to use their knowledge and efforts to influence the management of their illness - by reading research, discussing with other patients, acting as mentors, writing about their experience, using self tracking of symptoms and signs to help adjust daily self management, joining advocacy groups to campaign for better care, participating in research projects, speaking to clinicians at conferences and individually to educate them about managing their disease from a patient's perspective - all the sort of things we on this forum try to do.

I think it is valuable to have that perspective researched and written up. The idea being that it puts a positive view of the role of expert patients in improving clinicians' understanding of the realities of day to day management of illness from the perspective of patients, so clinicians will hopefully be more willing to listen to, and more able to better support, patients in future.

 

[Hutan]

Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce.

The choice of words used in the abstract stink, from where I am at. Basically you are empowered if you are compliant to treatment- 2 opposing concepts in my view. You are empowered if you are self managing successfully and if you have "gained power" over your disease. What happened to those whose disease won? Loser? Non-compliant? Must be their fault? Didn't do it right? Didn't have the right attitude? Didn't have money to pay for extra services to manage the disease (physio, massage, whatever) ?

That patient empowerment has often just been about how clinicians can increase compliance is one of the points the authors make in the abstract though - the authors are saying 'that's not nearly good enough'. I agree that there should not be such a need for self-management as there currently is in ME/CFS, but even in other diseases, there is a valid role for those patients and carers who want to be more involved in their care than most patients.


This paper looks at how people with a disease and their carers can push medical care forward, and advocates for changes that might make this easier and more productive. This paper isn't saying that every patients should have to undertake these activities, it's just recognising that undertaking these activities has value. That seems like a reasonable stance to me.

Seeking knowledge from the literature, social media, or other digital sources is a major part of participants’ self-management. This provides for learning opportunities as a knowledge seeker or to perform a more systematic search of available literature, compiling research, finding connections to their own condition, and stay updated on the latest scientific articles and evidence as an academic. These proactive actions allow participants to find new ways of managing their condition and are often performed when the information from health care is insufficient:

The physician rarely talks about the future of my Parkinson disease. So, I push a bit because I have found information about something I want to test. Then I think about those who are not as well informed, do they not get the same care as I do?
[Patient from stage 2, female]Suffering from two heart attacks, I decided it would not happen to me again. I started to read the literature of preventive measures, but it was too generic. So, I did my own review of scientific articles, to find the triggering aspect of my disease...
[Patient from stage 1, male]
Sometimes, an academic or knowledge seeker transforms into a patient researcher when developing a partnership with health care professionals to examine research to identify potential new treatment, use scientific methods to investigate their health issues, and engage as patient partners in research programs:

I found studies suggesting a biological medication for my systemic sclerosis. However, the medication was not yet approved. But with a great relationship and exchange concerning research, my physician helped by motivating a prescription for that medication...
[Patient from stage 1, female]

 

[Milo]

Thank you @Trish and @Hutan for sharing your views. I did not go any further than the abstract. When I read this though, I see through the lens of someone who's been sick for a decade and who had to self-manage, understand what is going on in my body, and "fight" with doctors throughout the course of this disease. That someone is also involved in advocacy and it really really kills me when I read that being empowered to self manage is the way to go. I just can't do it anymore.

I would gladly submit to more 2 days exercise tests, spinal taps, bone marrow biopsies, muscle biopsies (IE painful procedures) in order to understand the disease and contribute to science.

I just can't stand health care professionals who want to take care of my soul and want to get me into group sessions because they say, everyone needs to be educated. I don't want to be educated. And I am empowered enough.

Now I speak for myself and not for others. To each their own. I understand that others love their group sessions and need to understand their symptoms or learn about coping and managing their symptoms. But in my opinion, the explanations and recommendations they are given by health care professionals can be construed as non-eviedence based. Meditation and biofeedback are not going to cure you, and I am not sure I agree that the FODMAP diet or low inflammation diet is proven to be useful for patients with ME. And very honestly, not sure exactly why posture work is part of the education curriculum for patients with ME.

Anyways. The trigger is there for me. We deserve so much better. (This is a general thought. I did not read the paper and they may have good arguments there for all kinds of diseases and for N=1's context.

 

[Trish]

I just can't stand health care professionals who want to take care of my soul and want to get me into group sessions because they say, everyone needs to be educated. I don't want to be educated. And I am empowered enough.

Thanks for your thoughtful response, @Milo. If empowering patients and self management meant all the stuff about psychology and group therapy and quackery as you describe, I'd agree with you 100%. But I don't think that's what the paper is about.

What I want is a clinician who understands all there is to know about ME/CFS, takes my sympoms and disabilities seriously, does whatever testing is going to help me find any symptomatic treatments that might help if there are any, and treats me as an equal in working out what I need from them and what I can do myself to live as well as I can within the constraints of ME. I would call that empowering to me as a patient.