Experiences of stigma in children with long COVID, 2026, Holingue et al.

[Chandelier]

Experiences of stigma in children with long COVID

Spoiler: Authors

Holingue, Calliope; Villatoro, Cindy; Jacobson, Lisa A.; Malone, Laura A.

Abstract​

Objective​

This study examined stigma experiences among children and adolescents with Long COVID, a chronic condition marked by persistent symptoms following SARS-CoV-2 infection.
We sought to characterize the nature, prevalence, and impacts of stigma on affected youth using a mixed-methods approach.

Methods​

A cross-sectional survey was administered to 58 caregivers of children seen at a pediatric post-COVID clinic, including the PROMIS® Parent Proxy Global Health 7 + 2 measure and nine adapted items from the Internalized Stigma of Mental Illness Inventory.
Additionally, 18 parents participated in qualitative interviews analyzed using inductive thematic analysis.

Results​

Stigma was widespread: over 65% of caregivers reported their child felt out of place, and nearly half reported feelings of inferiority or shame.
Lower PROMIS Total T scores, reflecting worse caregiver-perceived child health, were significantly associated with experiences of alienation, discrimination, and stigma resistance.
Qualitative findings identified three themes: healthcare discrimination, distrust and skepticism, and alienation and isolation, contributing to social withdrawal, emotional distress, and barriers to care.

Conclusions​

Stigma is pervasive among children with Long COVID, affecting many aspects of life including healthcare interactions and social relationships.
Addressing both enacted and internalized stigma is essential to improving health and psychosocial outcomes in this population.

Impact​

• This article shows that stigma is pervasive and multifaceted in pediatric Long COVID, shaping children’s health, social participation, and emotional well-being.
• It adds the first mixed-methods evidence combining quantitative and qualitative data to describe stigma experiences in this population.
• The study identifies specific stigma domains (alienation, discrimination, social withdrawal) linked to poorer health and functioning, highlighting areas for targeted intervention.
• The impact is to guide future clinical, educational, and policy efforts aimed at reducing stigma and improving outcomes for affected youth.

Web | DOI | PDF | Pediatric Research

 

[BrightCandle]

Research on stigma in chronic illness has consistently shown that stigma-related distress contributes to negative mental health outcomes, including depression, low self-esteem, and social withdrawal, as well as reduced physical activity, development of maladaptive coping behaviors, poor healthcare utilization, and morbidity more broadly.

Denial of medical care does indeed kill people and lead to PTSD and worsening health outcomes. Doesn't matter how many times research finds the same thing over and over medicine keeps on with its prejudiced treatment failures.

a majority of parents (63.8%) reported that their child believed they could still lead a good and fulfilling life despite Long COVID

Parents contributing a bit of the stigma here too with unreasonable expectations for children that more than likely will suffer a lifelong disabling condition.

Parents reported they felt healthcare professionals dismissed or inadequately addressed their child’s Long COVID. One mother described how a functional medicine doctor initially refused to accept her daughter as a patient, bluntly stating she was “not taking any more Long COVID patients” because such patients “take up too much of my time” (P2).

Parents often sensed a subtle bias that their child’s condition was being minimized or misattributed, particularly misattributed to solely mental health symptoms. As one mother explained, “Every time you see a Long COVID team, they give you a psychologist,” which for her “triggers” the feeling “that you all think this is in people’s heads” (P7).

Finding appropriate mental healthcare itself was fraught with difficulty: one parent described how it took multiple attempts to find a therapist who “did not do any harm” – several prior therapists “did” cause harm by failing to understand Long COVID, leading to “lots of tears and additional struggles” for her teenage child (P15). She characterized Long COVID as a “different animal” that many professionals “don’t get,” and noted it was “tricky” to locate a counselor who was both competent with adolescents and truly “Long COVID and long illness friendly” (P15).

Parents described how school officials and teachers sometimes failed to accept Long COVID as a valid explanation for a child’s difficulties. For instance, one mother observed that while doctors validated her child’s condition, “the school has not” (P4). Because her teenager had a prior history of school absences due to mental health, some school staff assumed the renewed absenteeism was just a continuation of that issue rather than a result of Long COVID (P4).

Medicine, schools everyone piling onto sick children to blame them for their condition and deny them care and accommodations. Our society is just behaving so badly right now where it comes to chronic illness.

Families reported that stigma and misunderstanding left their children deeply isolated. Social life often changed dramatically after the onset of Long COVID. One mother recounted that her teenage daughter went from having an active life with “so many friends” to lamenting, “Now I don’t even leave my bedroom” (P2).

At school, children with Long COVID often found themselves socially ostracized or even targeted. Upon returning to campus, they frequently encountered peers and teachers who “did not understand Long COVID” and consequently “kept their distance” (P10). “Nothing was the same when she went back,” said one mother about her daughter’s school experience; classmates who once were friends were now “not including her in things” or even purposely excluding her (P10).

Faced with such misunderstanding, many children withdrew further, feeling that few people could relate to their experiences. One mother explained that her daughter now rarely talks about her illness because “she doesn’t feel like she can tell anybody… or that they’d even stop for a minute” to listen (P16).

This child is right, if you tell people they only abandon you. You either end up suffering in silence and forcing your body (until you can't) to maintain relationships or you share your suffering and they leave you. All roads lead to abandonment.

Not sure I quite agree with the idea of internalised stigma in this. A lot of the evidence is the children and their carers correctly identifying that if they explain they have long covid people will distance themselves from them and treat them badly. They thus feel bad and shame about not doing so and answer positively to feeling shame on the quantitative questionaire, but human connection is a necessary (and denied part of existence for ME/CFS and LC sufferers) part of life so prioritising it and personal mental cost seems reasonable, many of us did the same for as long as we could.

 

[rvallee]

Has anyone considered not doing that? Stares pointedly at medical profession. Doesn't seem like an option.

This is all a choice. All of it. Literally 100% a human-made problem, with human intentions and goals and so on. None of this has to happen, or is natural, it's a choice the medical profession has always made and continues to make. And instead of changing anything, some of them will study it, never quite getting the courage to bluntly tell the truth, a most radical act, while others, especially those most guilty of creating and amplifying that discrimination, will actually make a business out of "helping" to manage the monster they created and unleashed, a monster that they could simply stow away forever without any difficulty.

But they won't do that. Because the monster has been destroying and pillaging for decades, on their watch, and admitting it was all a monstrous act would be admitting guilt, and they don't have to do that, so they won't, because impunity is the true root of evil.