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This morning we have a talk from Emma Nicklin who is undertaking a PhD project in @LeedsMedHealth looking at the supportive care needs of TYA brain tumour survivors and their care givers - the famous @Leeds_Childrens PaedOnc Breakfast Meeting
The prior work of the entire world has been summarised in a #SystematicReview onlinelibrary.wiley.com/doi/abs/10.100…
Reduced functionality scores were reported in social, physical, spiritual, psychological (emotional/behavioural) and cognitive domains. These were frequently interrelated.
Care givers (mostly parents) were studies less - their themes were around survivor wellbeing, uncertainty about the future (relapse and after their own death), increased responsibility, reduced self wellbeing and altered family dynamics.
The unmet needs were reported even less - but around a desire for greater “company of peers”, educational support and to be talked to in healthcare consultations.
Care givers reported a dropping of support, want for greater education and support for their emotional needs
Care givers reported a dropping of support, want for greater education and support for their emotional needs
(These all accord pretty strongly with the responses to TYA and caregivers who have other chronic illnesses and disabilities - good call for being “access” focussed rather than “causal” focus? @davewecanaccess )
The current study tries to increase our understanding - particularly of needs and unmet needs - mixing questionnaires with 100 or so and 30 or so interviews
Field notes suggest people are not actively widely seeking mental health support, and find support only when directed. Accessibility- timing and location- are important. There may be a utility to make things all in a single “Amazon” of support and implicit peer knowledge
Course ... it was perfect to be here after listening to the work on how to improve recruitment yesterday at @HealthSciYork because #KnappIsAHero
And it’s a great day for late and long term effects across the whole of Twitter!
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