NF2 Studies
Helping to Advertise NF2 Lived Experience Research in the UK
NF2 & Identity
Researcher Name: Susanne McGowan
Susanne is currently conducting a study to explore the experiences of identity in people diagnosed with Neurofibromatosis Type 2 (NF2) as part of a Master’s in Research at Bangor University.
This study aims to understand how health and illness discourse may affect this. This research will focus on the experiences of people who have a formal diagnosis of NF2.
The following information is provided to help you decide whether or not you would like to take part in the study. Please take the time to read through this information and feel free to ask any questions you may have regarding it.
What does this research assess?
The aim of this research is to explore the experience of identity in people diagnosed with NF2 and understand how life with NF2 may impact identity formation, post-diagnosis. Participants will be asked to draw on their past experiences of diagnosis, identity changes, and illness perception.
Why have I been asked to take part?
This study is particularly interested in the experience of those who have a diagnosis of Neurofibromatosis Type 2. We are interested in the experiences of identity, over time, following a diagnosis of NF2. Research in this area is extremely limited in the context of Neurofibromatosis Type 2. This study may help to inform clinical practitioners to understand the impact of NF2 on identity and contribute to a body of research to inform rehabilitation needs following diagnosis and may be used in future publications.
If I agree to take part, what will it involve?
The study will be conducted using a qualitative method of research called Interpretive Phenomenological Analysis (IPA) which seeks to understand how participants make meaning of their experiences. Participants will be asked to complete an e-journal in response to guided questions from the researcher. You can expect your participation to stretch over weeks, in your own time.
The researcher may have follow up questions after you have completed your journal. Participants can choose to answer these via email or video call. Professional communication support will be provided to meet any accessibility requirements.
What do I need to know about contributing to this research?
Participation in this project is completely voluntary. If you would not like to participate simply state this to the researcher.
This research focuses on the experiences of people diagnosed with Neurofibromatosis Type 2. The criteria for taking part in this research is as follows:
– Must have a diagnosis of Neurofibromatosis Type 2
– Must have received their diagnosis no less than 12 month ago
The aim of this research is to explore the experience of identity in people diagnosed with NF2 and understand how life with NF2 may impact identity formation, post-diagnosis. Participants will be asked to draw on their past experiences of diagnosis, identity changes, and illness perception.
This study is particularly interested in the experience of those who have a diagnosis of Neurofibromatosis Type 2. We are interested in the experiences of identity, over time, following a diagnosis of NF2. Research in this area is extremely limited in the context of Neurofibromatosis Type 2. This study may help to inform clinical practitioners to understand the impact of NF2 on identity and contribute to a body of research to inform rehabilitation needs following diagnosis and may be used in future publications.
The study will be conducted using a qualitative method of research called Interpretive Phenomenological Analysis (IPA) which seeks to understand how participants make meaning of their experiences. Participants will be asked to complete an e-journal in response to guided questions from the researcher. You can expect your participation to stretch over weeks, in your own time.
Participation in this project is completely voluntary. If you would not like to participate simply state this to the researcher.
– Must have a diagnosis of Neurofibromatosis Type 2
– Must have received their diagnosis no less than 12 month ago