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Rights based participation

UNCRC report June 2023 -Scotland should prioritise non-discrimination, abuse/neglect/sexual exploitation, children “deprived of family environement”, mental health, asylum seeking and refugee/migrant children.

Should develop/strengthen strategies for community based therapeutic mental health programmes for children of all ages, mental health promotion, screening and early intervention.

Benefits to children are not the point – just a human right, under article 12.

Right of individual child but also of groups of children.

Voice is not enough (2007) – Lundy Model:

  • Space – to form/express views safely
  • Voice – facilitated to express veiws
  • Audience – views should be listened to
  • Influence – views must be acted upon as appropriate

Space – actively created! Not just reactive. And demonstrably safe. Consider the “seldom heard” child eg talking mats.

Voice – silence can be clear in meaning! Mode of expression? And support to understand options, possibilities. Lundy has published European commission guide to creating child-friendly documents

Subjects that are uncomfortable/awkward in particular – how can they be framed in way that can be discussed openly?

Audience – active listening. Relevant decision makers.

Influence – High expectations are good! But transparent about what is possible. Feedback and follow up.

Framework for feedback:

  • What did you agree with?
  • What if anything surprised you and why?
  • Did you disagree with anything? If so, what and why?
  • Has it influenced your views in any way? If so, how?
  • What have you decided?
  • What is happening next and when?

NI government has evaluation checklist and CYP feedback form.

Talking Mats – Margo

Structured visual communication – real or virtual world. Used for 2020 “Can Scotland be Brave?” report

Jones and Welch 2018 – representation (avoiding adult bias), judgement (viewing children as capable of making informed decisions), validity (even if different from adult views), Impact (how acted on)

What we think is “fine” because it’s what we are used to may not be for kids – eg hospitals/clinics.

Who all is in the room? Why are they there?

Beware leading questions

Before training, only 23% felt confident that CYP views were represented, rose to 89% after. Feedback from children was overwhelmingly “just nice to be listened to”.

Trust in organisations

“Boeing in 2018/9 after the crashes of two 737 Max 8 aircraft was
following a popular playbook:

  • First, deny any problem; then
  • sow doubt about claims that your products or practices cause harm.
  • Once the problem becomes undeniable, endeavor to deflect responsibility for the problem,
  • when deflection is no longer tenable, try to minimize or localize the problem eg blame lower-level employees”

Gives other examples of George W. Bush and Abu Ghraib camp (abuse attributed to
“a few American troops”).

Purdue Pharma – in response to  public criticism and lawsuits for its irresponsible opioid marketing strategy – tried to be seen as part of the solution rather than the cause of the problem.

Trust is based on perceptions of that institution; in contrast, trustworthiness is a quality we attribute. Trying to boost trust without addressing underlying reasons for the loss of trustworthiness are unlikely to succeed, and usually perceived as inauthentic.

You can measure trust (by asking people about their perceptions and beliefs) but not trustworthiness, which is more nebulous. 

We tend to talk about trust as being a one dimensional thing but there are probably different kinds of trust – (gives example of a successful financial advisor who has had multiple divorces – you might trust them for financial but not relationship advice). Do they have knowledge, skills, resources (often quite specific) to perform what you have entrusted them to do?

Trustworthiness on the other hand is built around questions of reliability, honesty, and integrity. If you have reliability trust in someone, then you believe that person does (or will do) what they say they do (or
will do).

Along with integrity, there are the values of fidelity, care, and benevolence—relates to putting others’ interests ahead of one’s own. Which raises the question, “whose interests are being privileged?”

So called crisis management experts talk about “optics” – public perception – and respond to it by “public performativity” of trust building in terms of use of language and symbolic actions.

Marks suggests you compare one kind of crisis he calls “opsis,” (ancient Greek word for “appearance” as used by Aristotle for one of his six elements of tragedy, often translated as “spectacle”) with institutional sepsis. “Just as medical sepsis in the human body is a critical condition that endangers life, the loss of an
institution’s integrity and trustworthiness is another form of sepsis—ethical sepsis—that poses an existential threat to the institution. A problem even when the loss of integrity and trustworthiness has not yet come to the attention of the public.

Gives vaccine hesitancy as another example – numerous and varied causes, including misinformation, but note strong ethnic patterns at time of Black Lives Matter campaign and NHS being called “institutionally racist”. Suspicion of corporate interests in public health messages too.

[Jonathan H. Marks, Hastings Centre]

Keeping up to date

Years ago it was already pointed out that there is way too much published research for the average doctor to keep up to date. Even to just be aware of all the guidelines that summarize research into best practice means reading hundreds of pages for the conditions that you might only infrequently see.

Of course you don’t always know if the patient in front of you is typical of the condition being discussed – research often excludes complicated cases (or children, or pregnant women).

Even then – “most published research findings are false” [Ioannidis, Plos 2005].  Lots of findings are never confirmed by further studies, and “knowledge” is based on a p value of <0.05. Actually depends on pre-test probability… Are certain things already known? Or is there just a lot of data without established relationships? Even if research design is perfect, bias eg selective reporting or manipulation of analysis. Different studies may use different end points or definitions, which increases the chance findings are false. True findings can be lost in noise or concealed by conflict of interest. Fixed beliefs may be as prejudicial as financial conflict of interest… Expert opinion often differs from outcomes of metanalysis. Small studies and small effects mean any significant result is more likely to be false.

In the model discussed in this study, an underpowered early phase clinical trial that produces a positive finding is likely to be misleading 75% of the time, even before you consider bias. If you are talking about a field where there probably isn’t actually any relationship between the things being studied, then large effects with high significance may just reflect the degree of bias, and should be seen potentially as a warning rather than something exciting!

Authors don’t check primary sources so misconceptions promulgate. Peer review is inefficient, inconsistent and insufficient. Post publication retractions are messy and difficult. See the problem of citations, below.

Systematic reviews are not kept up to date – in fact, they are usually already out of date when published… 

Authors of guidelines have a particular duty to ensure rigorous analysis. 

The average 10 min consultation will produce at least 1 unanswered question. 

[Richard Smith BMJ 2010]

The problem of citations

Citation error rate is estimated at 11-15% in biomedical literature. Propagates mistakes (even academic urban legends eg iron in spinach, due to a misplaced decimal point in a 1930s paper, which I have not verified) and undermines respect for literature review. 

Can be non-existent findings, incorrect interpretations of findings, or (20% of errors) chains of errors. Sometimes a hypothesis becomes a fact. 

1 surgical study was found to be misquoted by 40% of articles that cited it!

AI can help or make this worse. CONSENSUS.app is AI powered search engine for academics. 

Best would be a declaration, that the authors have read the original papers and checked for accuracy and relevance.

Critical Appraisal

Tools available (both of these from Oxford!), different ones for systematic reviews, diagnostic methods, prognosis, RCTs, qualitative etc:

Laryngomalacia

Intermittent squeaky inspiratory noise from collapsing larynx during respiration. Usually from birth.

Often worse when lying on back, or with colds, or with reflux (vomits).  Worse if hypognathia eg Pierre-Robin sequence.

Clinical diagnosis usually. Settles in first few months of life.

Will need intervention if significantly increased work of breathing, cyanosis or apnoeas, or growth failure.

Juvenile xanthogranuloma

Well circumscribed, raised yellow/brown firm papule or nodule, typically solitary. Can be congenital but otherwise typically very young boys, head and neck area, asymptomatic.

Can affect the iris – presents with a red eye…

Can ulcerate, otherwise they tend to atrophy and disappear after 3-6 years.

Seen in 10% of Neurofibromatosis type 1.

Can rarely be multiple and internal (liver, bone marrow etc). Screening of asymptomatic cases probably only justified if multiple.

Differential – mastocytoma, Langerhans histiocytosis, molluscum.

Moral Distress

Moral distress – when you feel an internal moral compulsion to act a certain way but cannot do so because of external constraints. Your morals are usually guided by ethical principles, such as beneficence and autonomy, as well as by professional virtues. Moral injury is the result of repeated experiences in which individuals act or witness actions by others that are incongruous with their moral beliefs.

The negative emotional consequences of moral distress and moral injury are depression, decreased quality of life, and burnout.

Examples are where organisational or legal rules restrict clinical practice – eg access to abortion in the US being restricted after Dobbs vs Jackson Women’s health organisation decision.

One way of dealing with moral distress is to continue practicing the professional virtues of integritycompassionselfeffacementself-sacrifice, and humility while maintaining patients’ best interests.

Self-effacement and self-sacrifice are the virtues that say that your wishes/feelings may need to come second to some greater good. May be uncomfortable, but doesn’t mean you are doing wrong.

Humility is the idea that what you think/believe isn’t necessarily right, and certainly won’t be right for everyone. So acting against your own morals is sometimes necessary when you are taking into account other people’s views.

Discussing these issues and feelings with colleagues will always help. Seniors should promote and cultivate a positive culture where less experienced feel able to talk openly about their feelings and identify their moral distress, frustration, and outrage without fear. Professionalism means inviting others to listen and being willing to speak openly about the constraints of practice.

Ultimately, the ideal would be compassion but without overidentification with or indifference to our patients’ plight. This is of course harder for those who may have experienced discrimination (lower socioeconomic groups, women, and racial or ethnic groups historically underrepresented).

DOI: 10.1097/ACM.0000000000005476 

Variceal bleeding

Due to portal hypertension from chronic liver disease.

Potential for large losses – may need local major haemorrhage protocol (FFP, platelets etc) – typically if blood loss >150mls/min, or else 20% blood volume loss in <1 hour (normal blood volume is 80ml/kg).

In adults, they try not to transfuse above 80 – thought that excessive transfusion may increase bleeding.

Terlipressin preferred to octreotide – from age 12. IV injection every 4 hours. No evidence for Tranexamic acid!

NG tube may cause more trauma…

In adults, Glasgow-Blatchford score used. Authors are Oliver and Mary Blatchford (couple?) – he was actually in Paisley at the time…

UTI prevention

For lower tract:

  • Cranberry juice still not definitely proven.
  • Methenamine tablets found to be equivalent to trimethoprim prophylaxis – licensed for adults only but BNFc gives dose for children. Needs acidic urine to work so don’t use citrates at same time.
  • D-mannose some evidence – from health food shops! Capsules I think, prob no dose for children.
  • Citrates?
  • NICE CKS specifically advises AGAINST use of these non-drug products, with exception of methenamine! Prob because self initiated short course trimethoprim superior?

Social determinants of health

David Gordon of International Poverty Research centre at Bristol has parody of Chief Medical Officer’s top ten tips for health – Number 1 is “don’t be poor”.

1Don’t smoke. If you can, stop. If you can’t, cut down.Don’t be poor. If you are poor, try not to be poor for too long.
2Follow a balanced diet with plenty of fruit and vegetables.Don’t live in a deprived area. If you do, move.
3Keep physically activeDon’t be disabled or have a disabled child.
4Manage stress by, for example, talking things through and making time to relax.Don’t work in a stressful low-paid manual job.
5If you drink alcohol, do so in moderation.Don’t live in damp, low quality housing or be homeless.
6Cover up in the sun, and protect children from sunburn.Be able to afford to pay for social activities and annual holidays.
7Practise safer sex.Don’t be a lone parent.
8Take up cancer screening opportunities.Claim all benefits to which you are entitled.
9Be safe on the roads: follow the Highway Code.Be able to afford to own a car.
10Learn the First Aid ABC: airways, breathing and circulation.Use education as an opportunity to improve your socio-economic position.