Sickle cell disease is a lifelong, genetic condition characterised by acute and chronic painful exacerbations. There is increasing evidence about experiences of patients transitioning from paediatric to adolescent care. But little is known of the life experiences of young adults (18-35 Yrs) with sickle cell disease.
Our research consortium of 2 UK universities and 2 Nigerian Universities (De Montfort univ, Leeds univ, Lagos State univ, + univ of Ibadan) is interested in understanding the experiences of young adults with sickle cell disease.
We will like to hear from researchers, working with young adults with sickle cell.
As young adult grew up living with SCD pain, that participants learned to balance their daily activities, to make decisions about jobs, relationships, and family activities based on their pain levels, and to choose effective medications. For example, they realized that with certain pain triggers, such as cold weather, they had to choose indoor jobs or allow for sick days.
Hi Indu. Thanks for your reply. It is to both groups. We decided to ask researchers given that researchgate is a platform for researchers. Cheers.
Bassey Ebenso are you interested in the experience of those in UK and Nigeria only? or elsewhere?
Hi Adil,
As the gap in literature appears to be global phenomenon, we are interested in experiences from a range of contexts (low-, middle- and high-income countries). We are, however, starting with a comparative study of experiences of young adults with SC in the UK and Nigeria.
I noticed this transition issue in my practice but it’s more global then SCD. more related to lack of Adolescent medicine. I guess. I will be happy to help.
Adil has nailed the underlying issue. As a clinician, I feel "it's a crime to be between 16 - 18 years of age if you have a chronic health problem"
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