Public "Being Sick Is a Full-Time Job": A Job Analysis of Managing a Chronic Illness

[RedFox]

Here's a piece of research that presents an interesting perspective on chronic illness:

"Being Sick Is a Full-Time Job": A Job Analysis of Managing a Chronic Illness
https://onlinelibrary.wiley.com/doi/abs/10.1111/1475-6773.13726

Abstract
Research Objective
The purpose of this study was to identify the duties, tasks, knowledge, skills, abilities, and resources needed for patients to manage chronic illness.

Self-management is a struggle for individuals with chronic illnesses. For many, the work involved in managing a chronic illness can feel like a full time job. The multitude of tasks and activities that are required are often not captured by the construct of self-management. This study explored managing a chronic illness in an innovative way by combining both a human resources and nursing lens, with the premise that managing a chronic illness is work and it should be analyzed as a job.

Study Design
In this descriptive qualitative study, 3 focus groups (FGs) with a total of 29 participants, from across the U.S., were conducted in person (FG 1) or via video conferencing (FG 2 and 3) due to COVID 19. A recruitment flyer was shared via email to a random selection of university employees in the southeastern U.S. and posted on Facebook pages of the research team. Nominal group technique was used to collect focus group data about activities engaged in managing their chronic illnesses, health, and healthcare. Data were analyzed using thematic analysis. Themes were used to create a job description identifying the duties, tasks, knowledge, skills abilities, and resources needed for chronic illness self-management.

Population Studied
People 18 years of age or older with at least one chronic illness that is currently being managed by a healthcare provider.

Principal Findings
The job of a patient included 5 duties: self-care, relationship management, resource management, coordination, and research/education. Each duty encompassed 6 tasks. Each task included the associated knowledge, skills, abilities, and resources necessary to be successful completing the task identified. For example, below is one of the six tasks related to coordination:


Duty: Coordination- Organize and schedule all appointments, paperwork, and medical history
Task
Communicate and advocate for self by asking questions, relaying medical history with providers, office staff, and others (friends, family, and employers), asking for help when needed.
Knowledge, Skills and/or, Abilities Needed to Perform Task
● Illness knowledge
● Health care system knowledge
● Health literacy
● Computer literacy
● Communication (includes oral and written) skills
● Social Skills
● Assertiveness skills
Resources Needed to Perform Task
● Potential support persons/groups
● Computer/Internet
● Phone
● Information
● Time
● Energy

Conclusions
Health care providers focus on helping patients through symptom monitoring and management, lifestyle changes (i.e. diet and exercise), and treatment/medication adherence. However, individuals with chronic illness described many more tasks associated with self-management. Without considering a patient work through a holistic lens that includes these additional tasks and responsibilities, the success of self-management interventions is likely limited.

Implications for Policy or Practice
Developing evidence-based interventions that address the key knowledge, skills, abilities, and resources needed to successfully carry out self-management activities are needed to reduce the burden of managing chronic illnesses, improve self-management behaviors, and enhance patient quality of life.

 

[Kitty]

It's an interesting approach, isn't it?

But they don't even mention the grasp of benefits law and consumer rights, project management experience, tactical negotiation skills, ability to navigate housing rights, in-depth knowledge of transport systems, providers, and regulations, and the ability to read between the lines of access statements, which are all essential for anyone even thinking of transitioning to the life of a disabled person.

 

[rvallee]

Developing evidence-based interventions that address the key knowledge, skills, abilities, and resources needed to successfully carry out self-management activities are needed to reduce the burden of managing chronic illnesses, improve self-management behaviors, and enhance patient quality of life.

Yes, those are commonly called treatments. Self-management of illness is exactly like self-management of poverty: it should be called enduring, no one is "managing" this, it's only the negligence of medicine that leaves the entire issue of illness so unaddressed that almost everything written by medical professionals about illness is basically an expression of complete bafflement and superficial knowledge, it leaves out every single thing happening outside of a clinic, which for chronic illness is basically nothing.

This requires figuring out the causes. This means research. Nothing works in medicine until they figure out the cause. As a matter of bad choices but this is the healthcare we have, not the one we want. The other approach of trying random things for no particular reasons has been tried and failed.

Presenting this as a "full-time job" is kind of creepy, though. Is being homeless a full-time job? Being a prisoner? A refugee? Just because something ruins your life doesn't mean it's basically like a day job. What a weird framing. Is being "normal"/acute sick a temporary gig? Of course not.

 

[bobbler]

It's an interesting approach, isn't it?

But they don't even mention the grasp of benefits law and consumer rights, project management experience, tactical negotiation skills, ability to navigate housing rights, in-depth knowledge of transport systems, providers, and regulations, and the ability to read between the lines of access statements, which are all essential for anyone even thinking of transitioning to the life of a disabled person.

I often think we need to start having some memes from disability charities where someone is in a job interview being asked a question like 'but can you give me work-based examples of where you have handled different conversations' or 'tell me about a time where you've had to work out an innovative solution to a problem' - and I don't mean in the old-school, patronising 'bless their little socks' tone.

I've now edited significantly because I got the wrong end of the stick, particularly from the title but also not reading the 'implications for ..' section at the end (training for patients). It's a shame as I hope that patients are given the respect for what they are managing, and in how skillful they might be needing to be.

It's difficult without the full text - this seems to use focus groups to create themes that then populate job descriptions. Without detail of what came from the focus groups I'm suspicious of whether the sudden recommendation then being for a training course for patients to do it. I also don't know if patients were made aware this would be a likely intended outcome/recommendation (and if it was pre-decided) when they participated and if they drove what was asked for on that course.

There's a big difference between something co-created which has the latest hi-tech for a specific condition and could find solutions where time/resource could be saved (apps etc) and one which focuses on motivation or skills patients already have. There are many other contexts where if something is flagged as hard-to-manage e.g. accessing appointments or website or whatever by many patients then that would also be looked at as the source of the issue which could be changed.

 

[RedFox]

Yes, those are commonly called treatments. Self-management of illness is exactly like self-management of poverty: it should be called enduring, no one is "managing" this, it's only the negligence of medicine that leaves the entire issue of illness so unaddressed that almost everything written by medical professionals about illness is basically an expression of complete bafflement and superficial knowledge, it leaves out every single thing happening outside of a clinic, which for chronic illness is basically nothing.

This requires figuring out the causes. This means research. Nothing works in medicine until they figure out the cause. As a matter of bad choices but this is the healthcare we have, not the one we want. The other approach of trying random things for no particular reasons has been tried and failed.

Presenting this as a "full-time job" is kind of creepy, though. Is being homeless a full-time job? Being a prisoner? A refugee? Just because something ruins your life doesn't mean it's basically like a day job. What a weird framing. Is being "normal"/acute sick a temporary gig? Of course not.

I disagree somewhat. Helping people better cope with chronic illness is valuable because we can't just invent a cure for all diseases in the foreseeable future. Cancer, heart disease, Alzheimer's, and so on kill millions of people a year despite us having thrown billions at them, and done lots of rigorous science. MS receives over $100M a year from the NIH, and there are some treatments, but it's still a very serious condition.

 

[Kitty]

Presenting this as a "full-time job" is kind of creepy, though. Is being homeless a full-time job? Being a prisoner? A refugee? Just because something ruins your life doesn't mean it's basically like a day job. What a weird framing. Is being "normal"/acute sick a temporary gig? Of course not.

I read it differently, as a recognition that our lives are not passive, and we are at risk of being assumed to have time and capacity that we don't. You can't survive as a homeless person, or a prisoner, or a refugee, or indeed a disabled person, without deploying a great deal of skill, knowledge, networking, tactical action, and almost constant threat surveillance.

This has enormous implications for the ability to self-manage health, because it's frequently forced into last place on the priorities list. This needs to be recognised as a factor, and currently it isn't.

 

[Kitty]

Helping people better cope with chronic illness is valuable because we can't just invent a cure for all diseases in the foreseeable future. Cancer, heart disease, Alzheimer's, and so on kill millions of people a year despite us having thrown billions at them, and done lots of rigorous science. MS receives over $100M a year from the NIH, and there are some treatments, but it's still a very serious condition.

Yes, I agree, insofar as it goes. But, as @bobbler says, we are offered this as treatment. The [$] millions, as they say, are missing.

No-one claims that helping people with MS or dementia or cancer to cope with their symptoms equates to treating their illness, it would be profoundly insulting. But for us...

 

[RedFox]

Yes, I agree, insofar as it goes. But, as @bobbler says, we are offered this as treatment. The [$] millions, as they say, are missing.

No-one claims that helping people with MS or dementia or cancer to cope with their symptoms equates to treating their illness, it would be profoundly insulting. But for us...

Yes, there's an enormous gulf between the research and care we deserve and what we want. So having different views for ME and illness in general is justified. The paper is about chronic conditions in general, so I've mostly discussed things in that context here.

 

[Michelle]

A decade ago or so when Facebook asked me about my work, I listed this:

Self-Care Coordinator at Chez Moi

Schedule and prepare for 4+ medical appointments per month, maintain benefits and other assorted paperwork, compile and record daily symptom data in spreadsheet, follow current disease research, facilitate 12+ hours/day of sleep and rest breaks, supervise in-home care workers, manage and administer multiple different medications, integrate physical therapy, yoga, and meditation into managed daily activity.

(That was back when I was still well enough to manage the odd yoga pose or PT exercise)

Nice to see some academics acknowledge what most of us already know: being sick is a lot of work.

 

[oldtimer]

A decade ago or so when Facebook asked me about my work, I listed this:



(That was back when I was still well enough to manage the odd yoga pose or PT exercise)

Nice to see some academics acknowledge what most of us already know: being sick is a lot of work.

I think work is a more apt word for struggling to get through each day. "Job" implies choice, evaluation and remuneration.

 

[bobbler]

Yes, I agree, insofar as it goes. But, as @bobbler says, we are offered this as treatment. The [$] millions, as they say, are missing.

No-one claims that helping people with MS or dementia or cancer to cope with their symptoms equates to treating their illness, it would be profoundly insulting. But for us...

Sorry Kitty I apologise I've caused a bit of a mess here as I edited that post when it must have not refreshed (so thought it had no likes etc) - I'm not on form today. I hope I haven't screwed up your post by doing so

 

[Kitty]

Sorry Kitty I apologise I've caused a bit of a mess here as I edited that post when it must have not refreshed (so thought it had no likes etc) - I'm not on form today. I hope I haven't screwed up your post by doing so

Don't worry, it wouldn't stop it making some kind of sense...at least as much sense as I ever make!

I've temporarily paused "likes", as I realised I was using them as a way to indicate that I'd read posts rather than that I particularly agreed with them (although of course both are often true). In that moment it struck me as an odd thing to be doing, so I decided to leave it to mull in my back brain for a while.

Given the state of my cognitive function, I might not come to a conclusion anyway—it's just a habit left over from when I was capable of thinking. It used to work quite well, and now doesn't.

 

[Michelle]

I think work is a more apt word for struggling to get through each day. "Job" implies choice, evaluation and remuneration.

Fair enough. Though I suppose an argument could be made that I am renumerated with disability benefits. Not that it would be a strong argument as disability benefits are premised on meeting my physical needs regardless of my "doing" anything (though without doing the considerable work associated with maintaining those benefits, I wouldn't have them). I think at the time I wrote that I was still struggling with feelings of worthiness, laziness, and/or usefulness--of needing to justify my life within a capitalist framework in which one has value insofar as one "earns ones keep" as it were. Especially as one of the questions I was often asked during the first several years I was no longer working was "what do you do all day?"

I think the paper in the OP is, in many ways, trying to answer that question. Being sick is not necessarily the passive situation that healthy people assume it is (I know I certainly thought so before I got sick; when my therapist first broached the idea of my going on disability, my first horrified thought was "what on earth would I do all day?!"). As the paper as well as comments in this thread have underscored, being sick "successfully" requires a lot of skills that have long gone unrecognized. And particularly for those of us who spent our lives before getting sick building CVs emphasizing skills, to suddenly have our new skill sets ignored (both by society and ourselves) is painful. While I don't know that I would ever feel comfortable embracing the pejorative "professional patient," I do have moments where I simply want acknowledgment that I'm damn good at my current job.