Hidden disability: a study of the psychosocial impact of living with pituitary conditions, 2022, Norman et al

Background:
Pituitary patients often experience psychosocial symptoms associated with their condition.

Aims:
To explore the condition management experiences of pituitary patients and their psychosocial symptoms and to explore the impact of these on quality of life.

Methods:
A sample of 748 individuals aged 18 to more than 65 years) completed a questionnaire relating to quality of life and the psychosocial impact of pituitary conditions.

Findings:
Analysis of the qualitative sections using content analysis identified four themes: social isolation, emotional and behavioural issues, appearance distress and physical and cognitive effects including fatigue and pain. An overarching theme of hidden disability emerged.

Conclusion:
The study identified multiple biopsychosocial factors that impact quality of life, with symptoms not visible to others most likely to impact negatively. Nurses are well placed to provide support and information to patients about the possible psychosocial impact of pituitary conditions to enable positive adjustment.

Paywall, https://www.magonlinelibrary.com/doi/abs/10.12968/bjon.2022.31.11.590

 

Very hard to know without seeing any more of the article what it is claiming and whether that has any robustness behind it.

eg I don't even what they mean and have focused on in 'psychosocial issues' under their 4 themes. Definitely don't know whether their conclusions of support being offered will come from the right or wrong angle.

What I do know is that completing a questionnaire that I guess has been written by someone else without exploratory research stages to identify with patient insight what questions should be on there in the first place looks like a good way of skewing things. And that if the research does not ask the patient 'what is the solution/would help' then their research has not actually provided the outcome information they suggest of 'nurses being able to offer support'. Identifying and listing a problem, doesn't mean that nurses will get the right end of the stick in offering support unless you are not assuming what that is surely, but finding out what they need?

 

I knew a woman who had her pituitary removed for cancer. She looked like the stereotype of the couch potato, very overweight, plodding walk and a blank looking face that was slow to react to anything.

She did not look ill just pressed all the buttons for prejudice. A horrible thing to happen to anyone.

 

Have no idea what the article actually says, but I was drawn to the conclusion that the best support was a nurse, not sending people off for generic CBT.

It would be interesting to compare how helpful people who felt they had psychological support needs found a specialist nurse working in the relevant clinical specialism in contrast to a separate talking therapy service.

 

It would be encouraging if this was an analysis on true psycho social impacts, you know before the field was hijacked and a trope established and the CBT empire grown .

Few understand the total impact of chronic illness. It would be refreshing if the investigation / analysis actually was based on true lived experience.

 

Probably a stupid comment, but had a moment of thinking really one of the issues is the order they've jammed words together with. Really it is 'social-psycho' if you are thinking about what impacts on what, or there is probably something even more precise. It doesn't tend to be the individual's state of mind driving it anyway, but the behaviour towards people of externals, or the illness (and maybe lack of adjustments) preventing 'access' etc -and I think that the areas need to begin to title themselves to that effect in order that we can differentiate the emphasis and ideologies