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NF2 & Identity Research Study

21 April 2021

Suzi McGowan is a Postgraduate student at Bangor University and is looking to talk to people diagnosed with NF2 to understand their experience of identity.

Suzi is a phenomenologist and is interested in understanding lived experience in relation to specific life events and phenomena. As a researcher, and a person living with NF2, she understands the importance of learning from others’ experiences. In life, we all experience different things in different ways, and this is where phenomenology is unique as it purely focuses on the subjective experience of an individual and how they make meaning from it.

Phenomenology seeks to gain an in-depth understanding of your experiences of a particular concept or event and how meaning is attached to it; in this case, the research is interested in identity following a diagnosis of NF2.

What does taking part in this research involve?

Suzi will be providing electronic journals for participants to complete. This can be done over the course of days, weeks, or months to give you time to reflect and revisit your responses if you want to. It’s entirely up to you how long you take. The aim of this journal is to provide you with a space to reflect and share your experiences which will allow Suzi to gain an in-depth understanding of your personal experience of identity following your diagnosis of NF2. The questions are designed to explore your thoughts, feelings, and views about your experiences so please do be as open and honest as you can and answer as fully as possible - there are no right or wrong answers.  

You can withdraw from this study at any time without having to give a reason and if you feel uncomfortable with answering any questions, you don’t have to. All of your information is treated with the strictest confidentiality and any results won’t contain any identifying information. This means you can be as open as you like.

Once you have completed your journal, Suzi may have follow up questions for you. You can choose whether this will be done via email, or you can opt for a virtual interview via zoom (any communication needs will be met, such as speech-to-text, or lipspeakers).

Questions will cover your experiences of diagnosis and treatment, how you perceive yourself, and your experience of social roles. 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 that provides insight into rehabilitation needs following diagnosis and may be used in future publications such as academic journals.

To take part you need to have a diagnosis of NF2 that was made longer than 12 months ago, be over the age of 18, and live in the UK. Whilst participation is voluntary, your contribution will help to gain a greater understanding of how NF2 can impact identity.

To take part or if you have any questions email Suzi directly at szm20rpg@bangor.ac.uk

Ethics Approval Code:  ShipssPG2021(1)

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