The health and economic burden on family caregivers of persons with me/cfs diagnosis: a register data study from Norway, 2025, Kielland et al

[forestglip]

The health and economic burden on family caregivers of persons with me/cfs diagnosis: a register data study from Norway

Anne Kielland, Jing Liu & Kjartan Sarheim Anthun

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Background
Myalgic encephalomyelitis is an illness that affects the labor capability and need for services among those affected. Interventions and services for comparable illnesses are either inaccessible or ineffective for this group. Partners and parents may take on the caregiver burden, affecting their labor capability and health.

Objective
This study tested how limited treatment and support options available to persons with myalgic encephalomyelitis is associated to work participation, health, and use of public transfers among partners and parents of those affected.

Methods
We used administrative data from Norwegian patient registries from 2009 to 2018 on the diagnostic code G93.3, matched with population register income and health data from Statistics Norway. The dataset made it possible to identify a sample of partners and parents of persons with the diagnosis. The data included a control group drawn from the general population.

We used optimal pair matching to construct separate datasets for pairs of matched individuals from the control group and the group of G93.3 cases, their mothers, fathers, and male and female partners.

Results
Having a partner or child with the G93.3 diagnosis contributes to strengthening traditional gender roles. Female family members worked less, and male family members worked more.

Whereas female family members more often ended up depending on public transfers, male family members did so less often. All caregiver groups experienced increased personal health problems.

Conclusions
When tailoring support for the patient group, welfare services should consider how especially female family caregivers may be adversely affected by insufficient or inadequate support.

Web | PDF | Discover Public Health | Open Access

 

[forestglip]

Requested to be posted by @Utsikt

 

[Utsikt]

Requested to be posted by @Utsikt

Thank you!

 

[Sean]

Having a partner or child with the G93.3 diagnosis contributes to strengthening traditional gender roles.

Odd way to phrase it.

 

[Utsikt]

Odd way to phrase it.

Why?

It correlates with women working less and men working more.

 

[rvallee]

When tailoring support for the patient group

What support?! It's all imagination-based stuff.

Also I wanted to check what data they could find on whether patients even have support, but either I missed it, or they seem to have focused exclusively on people who do, with the purpose of interviewing them, so that paints a very distorted picture.

In total, 24 in-depth interviews were conducted through home visits to affected families nationwide, and six digital focus groups were conducted with the caregivers of the most severely ill.

Now what about those who don't have such support? Maybe some family, just not supportive. All friends gone. No life partners. I expect it's the majority, but no one ever looks for that, there's just zero coherent strategy in making sure this research actually serves a purpose.

 

[Utsikt]

Also I wanted to check what data they could find on whether patients even have support, but either I missed it, or they seem to have focused exclusively on people who do, with the purpose of interviewing them, so that paints a very distorted picture.

They used register data for their analyses to look at the effect on partners and parents. This encompasses all patients that got the G93.3 diagnosis in the study period.

It is not an interview study, the methods section in the abstract makes that very clear.

Now what about those who don't have such support? Maybe some family, just not supportive. All friends gone. No life partners. I expect it's the majority, but no one ever looks for that, there's just zero coherent strategy in making sure this research actually serves a purpose.

I don’t see what’s wrong with putting some attention towards how ME/CFS affects those around the patient. This research shows that it does affect them, and can be used for advocacy purposes to ensure that both the patients and the carers get the help they need.

We also need research that focuses on the people that are completely alone, but that was outside the scope of this study. If you read the rest of the research from Tjenesten og MEg, it’s clear that the authors are aware of this issue as well.

What support?! It's all imagination-based stuff.

There are plenty of general support schemes that pwME/CFS and their carers would be eligible for on the basis of their needs. In Norway, there is systemic discrimination against pwME/CFS, and this research highlights parts of the impact of that discrimination.

There is also a lack of specialised services tailored to pwME/CFS, which was extensively covered in this publication that was the source of the interviews that generated the hypothesis that was the basis of this register study.

'We have no services for you… so you have to make the best out of it': A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients' dissatisfaction with healthcare services - PubMed

The ME-patient organisation suggested research topics to the call from which this study got funding. Patients and caregivers provided feedback during analysis and interpretation of data.

pubmed.ncbi.nlm.nih.gov

 

[Sean]

Why?

It correlates with women working less and men working more.

So why not say it that way?

It isn't a big deal, and might just be translation or second language issues. But it reads oddly to me.

 

[Utsikt]

So why not say it that way?

It isn't a big deal, and might just be translation or second language issues. But it reads oddly to me.

To me it’s very clear what «traditional gender roles» refers to, but I’m also Norwegian and it’s a commonly used phrase here. So yeah, might be a language/culture thing.