Psychosocial Nursing Diagnoses of Individuals With Myalgic Encephalomyelitis-Chronic Fatigue Syndrome: A Descriptive Study, 2025, Oter-Quintana et al

[forestglip]

Psychosocial Nursing Diagnoses of Individuals With Myalgic Encephalomyelitis-Chronic Fatigue Syndrome: A Descriptive Study

Cristina Oter-Quintana, Almudena Alameda-Cuesta, Pedro Ruymán Brito-Brito, Ana Isabel Parro-Moreno, María Teresa Alcolea-Cosín, Teresa González-Gil, Valentín Hernández-Barrera, Jesús Esteban-Hernández

[Line breaks added]

ABSTRACT
Aim
To describe the prevalence of psychosocial nursing diagnostic labels and their relationship with sociodemographic characteristics in adults with myalgic encephalomyelitis-chronic fatigue syndrome (ME/CFS).

Design
This is a cross-sectional descriptive study.

Methods
Population: Adults with ME/CFS. Inclusion criteria: Being 18 years of age or older, having a medical diagnosis of ME/CFS and being an active member of a patient association. Data collection took place between May and July 2022 using an online and paper-based ad hoc form that included sociodemographic and clinical data.

Psychosocial diagnostic labels were obtained using the Questionnaire for Psychosocial Nursing Diagnosis (QPSND). In addition to a descriptive analysis, the relationships between the diagnostic labels obtained were explored through a multiple correspondence analysis, which was supplemented by a hierarchical cluster analysis of the results of the latter.

Results
Forty-eight participants completed the form. Their mean age was 52.5 years (SD = 6.81), 95.83% were female, 70.83% had a university education, and 35.42% were actively working.

Sixty-six percent had some degree of officially recognised disability, and 16.67% had an officially recognised degree of dependency.

The most prevalent diagnostic labels were Powerlessness (79.17%), Ineffective Coping (62.5%), and Fear (62.5%).

The multiple correspondence analysis and subsequent cluster analysis identified profiles of individuals with ME/CFS: one profile (cluster 3) had greater psychosocial involvement based on the diagnostic labels assigned, as well as a lower educational level and higher symptom intensity. The other two profiles appear to bring together mainly employed or retired individuals with lower severity and frequency of symptoms, and who are at risk of developing psychosocial human responses.

Conclusions
Participants have a high prevalence of psychosocial diagnostic labels, suggestive of the psychosocial distress concomitant with ME/CFS. Nursing diagnoses allow subgroups of affected individuals to be differentiated and aligned based on differences in sociodemographic and clinical characteristics.

Implications for the Profession and/or Patient Care
We believe that this is a pioneering study in the identification of psychosocial nursing diagnostic labels of individuals with ME/CFS. Having profiles of people with ME/CFS associated with psychosocial nursing diagnoses facilitates their identification in healthcare practice and makes it possible to anticipate recommended interventions.

Impact

• What problem did the study address?
  • This study aims to ascertain the prevalence of psychosocial nursing diagnostic labels in individuals with ME/CFS. It also aims to identify more sociodemographic and clinical characteristics associated with these psychosocial problems.
  
  
  
• What were the main findings?
  • Individuals with ME/CFS had a high prevalence of psychosocial nursing diagnostic labels. Three subgroups of participants with ME/CFS were identified based on their diagnostic labels. Characteristics such as lower educational level, higher symptom intensity, and a diagnosis of fibromyalgia and Sjögren's syndrome, in addition to ME/CFS, were associated with the subgroup that had the most adverse psychosocial diagnostic profile. The other two subgroups appear to bring together mainly employed or retired individuals with lower severity and frequency of symptoms and who are at risk of developing certain psychosocial human responses.
  
  
  
• Where and on whom will the research have an impact?
  • This study may have an impact on both nursing management and clinical practice by informing the design of care plans for patients with ME/CFS.

Reporting Method
STROBE.

Patient or Public Contribution
Contributions from individuals with ME/CFS were taken into consideration for the study design, especially regarding the sampling and data collection procedures. The results of the study were presented publicly at research conferences attended by health professionals and members of associations of people living with ME/CFS.

Link | PDF (Nursing Open) [Open Access]

 

[Hutan]

Huh? Since when has good nursing involved slapping judgmental labels on people?

 

[Hutan]

The study population was people with ME/CFS who were members of a patient association located in Madrid (Spain). The association includes 211 people who have reported being diagnosed with ME/CFS.

The participation rate of those who were listed as living with ME/CFS in the association's records was 22.7%.

Taking all symptoms into consideration, higher median frequency and severity scores are associated with what we have termed a poorer psychosocial diagnostic profile.

So people reporting more severe symptoms scored worse on this survey of (essentially) psychosocial wellbeing.

There might be something useful in this study, but I think their sample is too small, and too heavily selected to tell us much about what it is like to be a person with ME/CFS, or even just what it is like to be a person with ME/CFS in Madrid.

 

[Jonathan Edwards]

The next step is to have an App on the end of a phone number that can provide your social diagnosis by robot.

 

[Midnattsol]

So people reporting more severe symptoms scored worse on this survey of (essentially) psychosocial wellbeing.

There might be something useful in this study, but I think their sample is too small, and too heavily selected to tell us much about what it is like to be a person with ME/CFS, or even just what it is like to be a person with ME/CFS in Madrid.

More symptoms also means you are coping worse.

On the nursing diagnoses: Those of us who are not doctors and can't set "proper" diagnoses, have our own set of diagnostic codes we can use, which is supposed to help us be concrete when working with patients but also help legitimize some of the work we do that otherwise maybe wouldn't be seen.

 

[Hutan]

On the nursing diagnoses: Those of us who are not doctors and can't set "proper" diagnoses, have our own set of diagnostic codes we can use, which is supposed to help us be concrete when working with patients but also help legitimize some of the work we do that otherwise maybe wouldn't be seen.

I'm a bit frightened to ask - do they include labels like 'ineffective coping'? Do they get recorded anywhere where a patient could see them and disagree with them if they wanted to?

 

[Utsikt]

The Introduction and Background sections are actually quite good.

But then they write this in the discussion:

The higher psychosocial distress in our study participants could be explained by the high prevalence of certain characteristics—namely, a greater number of female participants; a high percentage of participants living alone; participants having a disability; and participants being medically diagnosed with anxiety-depression—, which, according to the findings of Brito and Aguirre (2014), are associated with a higher likelihood of diagnostic label assignment by the QPSND.

Piss off with this misogynistic BS.

 

[Utsikt]

Regarding Ineffective Coping, Braga and da Cruz (2005) point out that this diagnosis describes a human response that, in turn, can trigger other dysfunctional responses. According to these authors, it is plausible that Ineffective Coping predisposes individuals to feelings of Powerlessness.

However, it would also be possible to consider the opposite direction of this relationship, whereby the sense of inadequate control that characterises Powerlessness would predispose individuals to Ineffective Coping (Herdman et al. 2021).

Although the label Ineffective Coping refers solely to the outcome or product of coping rather than to coping phenomena (Becket 1991), the high prevalence of this label—despite the years elapsed since diagnosis (median = 7 years)—suggests the complexity of the disease coping process.

In our view, effective nursing support is essential to enhance the development of adaptive strategies to cope with the disease and, at the same time, to increase the sense of control, a loss of which leads to Powerlessness.

As with all of the BPS questionnaires, they seemingly accept their conclusion without exploring if the answers might reflect something else entirely.

 

[Midnattsol]

I'm a bit frightened to ask - do they include labels like 'ineffective coping'? Do they get recorded anywhere where a patient could see them and disagree with them if they wanted to?

I'd guess nursing diagnosis are recorded the same as nutrition diagnosis, together with other diagnosis in the health record.

The definition for "Ineffective coping" from the American nursing association webpage is as problematic as can be expected:
Adaptive behavior disorder and inability to solve problems.

Related factors:
– Situational crises of maturation.
– Vulnerability of the person.
– Multiple life changes.
– Lack of vacation.
– Relaxation inadequate.
– Exercise scarce.
– Poor nutrition.
– Overload of work.
– Limits few realistic.
– Method of inadequate competition.

Features:
– Inability to meet basic human needs and solve problems.
– Destructive behavior toward himself.
– Changes in social participation.
– Inappropriate use of defense mechanisms.
– Handling verbal.
– Lack of appetite, sleep, etc …
– Excessive use of snuff, alcohol or drugs.
– Chronic fatigue, insomnia, etc …
– Hypertension, diabetes, ulcers, headaches, irritable bowel, muscle aches, etc …
– Anxiety.
– Low self-esteem and chronic depression.

 

[Hutan]

In our view, effective nursing support is essential to enhance the development of adaptive strategies to cope with the disease and, at the same time, to increase the sense of control, a loss of which leads to Powerlessness.

As I read that, I am reminded of @rvallee's reply to a question on another thread about what support people with ME/CFS need for pacing.

It would be useful if there was less focus from health professionals on labelling and changing the person with ME/CFS, and more focus on what needs to change in the person's environment in order to make coping easier.

With pacing, health professionals and support organisations often want to tell us about how to chop the vegetables for the evening meal in the morning and improve sleep hygiene. Actually, often there needs to be help to get financial and practical support, and there needs to be discussions with family and friends, so that work hours can be reduced, so there is more help with tasks and so that everyone understands that things are different now.

It is very hard to 'develop adaptive strategies to cope with the disease' if everyone around you and the government is expecting you to keep doing pretty much what you did before.

 

[Utsikt]

It would be useful if there was less focus from health professionals on labelling and changing the person with ME/CFS, and more focus on what needs to change in the person's environment in order to make coping easier.

It’s a classic case of BPS meaning «put everything on the patient» instead of acknowledging how external factors might influence their situation. They can’t even use the model correctly.

 

[Utsikt]

The definition for "Ineffective coping" from the American nursing association webpage is as problematic as can be expected:

Features:
– Inability to meet basic human needs and solve problems.
– Destructive behavior toward himself.
– Changes in social participation.
– Inappropriate use of defense mechanisms.
– Handling verbal.
– Lack of appetite, sleep, etc …
– Excessive use of snuff, alcohol or drugs.
– Chronic fatigue, insomnia, etc …
– Hypertension, diabetes, ulcers, headaches, irritable bowel, muscle aches, etc …
– Anxiety.
– Low self-esteem and chronic depression.

Most of those are just being ill. Nonsense, really.

 

[Yann04]

Most of those are just being ill. Nonsense, really.

I’m actually pretty shocked at how prejudiced this diagnosis is.

It’s a very individualistic neoliberal assumption that completely ignores disability or societal factors and assume whenever the patient can’t “be normal” or “do normal stuff”, it’s an individual failure to cope.

 

[Utsikt]

I’m actually pretty shocked at how prejudiced this diagnosis is.

It’s a very individualistic neoliberal assumption that completely ignores disability or societal factors and assume whenever the patient can’t “be normal” or “do normal stuff”, it’s an individual failure to cope.

Exactly. It’s also so backwards and circular. It’s like they asked «what can failure to cope look like», and then just took any if the signs as proof that the patients fails to cope.

 

[Yann04]

Exactly. It’s also so backwards and circular. It’s like they asked «what can failure to cope look like», and then just took any if the signs as proof that the patients fails to cope.

It really seems to me like if an illness has high “failure to cope” according to them, it just means society has a high “failure to accomodate”.
(Of course, some illnesses are impossible to cope with no matter how much accomodation. But even me in a perfect world think I could cope okay with very severe ME/CFS if it had near the same societal understanding and systemic support as cancer does in many rich countries.)

 

[arnoble]

Introduction:
... led to much debate among health professionals who question the very existence of the disease. As a result, ME/CFS has been considered a ‘contested illness’
... common to psychologise the symptoms of ME/CFS, attributing them to problems such as depression, stress or somatisation, in which the physical symptoms are an expression of social or emotional discomfort

We (society and medics) have surely evolved past all that. Fashioning psychosocial labelling seems to be backwards-looking and, in a way, actually reinforcing the very stigmas etc they profess to want to address. I can't see any benefit of this sort of labelling; to anyone.

 

[rvallee]

Ask useless questions, get useless answers. Episode #55194 and counting.

The higher psychosocial distress in our study participants could be explained by the high prevalence of certain characteristics—namely, a greater number of female participants; a high percentage of participants living alone; participants having a disability

What these poor studies show again and again is how strong the indoctrination in medical training is that professionals appear to have no basic understanding of illness as human beings experience it, and only work with reductive models and frameworks that ultimately make them understand it less than if they had no training at all. It works fine when the models and frameworks are based on reality, but they often aren't. Everything still fully depends on knowing the biology and physiology, and simply has no plan B for when they don't. This is so much worse than having no plan B, it's a plan F, for failure.

I’m actually pretty shocked at how prejudiced this diagnosis is.

It’s a very individualistic neoliberal assumption that completely ignores disability or societal factors and assume whenever the patient can’t “be normal” or “do normal stuff”, it’s an individual failure to cope.

Stuff like this never ceases to amaze me, at just how bad it is. All of this is under the pretense of being 'holistic', of seeing the individual as a whole and how our internal psychology and social factors influence illness. And yet those models literally never feature anything but the internalizing psychology. They are literally less holistic than the traditional medical approaches from, say, the early 20th century. The only purpose this serves is to put the entire burden of illness on the sufferer, freeing not only society itself of the burden, but the medical profession, which washes its hands entirely off it. And doing a very poor job of it, very dirty hands.

Actually this is more like seeing sick people as a hole, in which to dump and project their emotional overflow into.

 

[Sean]

As with all of the BPS questionnaires, they seemingly accept their conclusion without exploring if the answers might reflect something else entirely.

They are clearly doing everything they can to avoid even properly acknowledging, let alone robustly and honestly testing the obvious alternative.

It’s a classic case of BPS meaning «put everything on the patient» instead of acknowledging how external factors might influence their situation. They can’t even use the model correctly.

Blame Shifting 101

I’m actually pretty shocked at how prejudiced this diagnosis is.

It’s a very individualistic neoliberal assumption that completely ignores disability or societal factors and assume whenever the patient can’t “be normal” or “do normal stuff”, it’s an individual failure to cope.

It really seems to me like if an illness has high “failure to cope” according to them, it just means society has a high “failure to accomodate”.

This

And yet those models literally never feature anything but the internalizing psychology.

The alleged "internalizing psychology".