Nutrition in Sickle Cell Research Project a Anglia Ruskin University research project. Please note that this research is not being conducted by the Sickle Cell Society

Title: Social-ecological factors influencing the unique nutrition needs of sickle cell patients impacting their health and wellbeing outcomes: exploring service user and stakeholder perceptions.

Principal Investigator: Claudine Matthews

Study Groups:

• Group 1 – Sickle cell service users
• Group 2 – Sickle cell stakeholders (Health and Social Care Professionals)

Inclusion Factors:

• Are you an adult with sickle cell disease?
• Do you live in the Hackney area?
• Do you have sickle cell and have or look after children or adolescents with sickle cell disease?

Have you ever experienced any of the following symptoms?

• Poor appetite
• Weight loss
• Low weight
• Frequent infections
• Poor recovery from surgery or illness

Are you able to commit to attending a?

1. 90-minute Focus Group
2. 90-minute follow -up partnership meeting with stakeholders to co-produce a nutrition education tool and evaluate the tool using a questionnaire
3. 60-minute research feedback meeting

Proposed Schedule:

• 90-minute focus group to discuss the unique nutrition needs of sickle cell patients and how the social factors affect it
  • Scheduled – 4^th April 2020 from 11.30 – 1pm
• 90- minute follow -up partnership meeting to co-produce the nutrition education tool and evaluate it
  • Scheduled – 9^th July 2020 from 11.30 – 1pm
• 60 – minute meeting about the final findings of the research
  • Scheduled – 8^th October from 11.30 – 12.30pm

How to get involved:

If you have answered yes to the questions above and want to take part in the study please email – cmnutri@icloud.com for more information.

Refreshments will be served at all the meetings– Thank You!

Ethics Approval: ESC-SREP-18-334 -Anglia Ruskin University

Closing date for recruitment is 30/03/2020