Living (Coping) with Scleroderma: Research

Hello All,

I am doctorate student of Counselling Psychology and Existential Psychotherapy at NSPC, Middlesex University London. I am conducting study on ‘Experience of living with Systemic Sclerosis: A phenomenological Inquiry”.

The study is being carried out as part of my studies with NSPC Ltd and Middlesex University. My research interest in this topic is due to my personal experience of living with systemic sclerosis since last 4 years. As I know that living with systemic sclerosis is challenging as it affects every aspect of life from family relationships to holding a job. My aims and objective to conduct this study are: to explore the experience; understand the existential issues in people living with systemic sclerosis and how they confront with their crisis; to understand about the impact of Systemic Sclerosis on different aspects of their lives and how they cope with this disease. Participants will be selected on following criteria.

•Only females would be included.

•All participants aged between 30 to 70 years would be included in the study.

•Professional medical doctors should have given the diagnosis.

•The target population would be either married individuals or those in a stable relationship.

The selected participants will have to be engaged in face to face interviews at Scleroderma Society Building, London. Procedures will include a 60-90 minutes audio-recorded semi-structured interview followed by a non-taped debriefing session. All research ethics have been approved by NSPC and Middlesex University and will be strictly followed. To accomplish my doctorate degree, I have to recruit 6-8 research participants for conducting interview who are suffering from Systemic Sclerosis. Interested Participants can contact to me.

Note: I would reimburse travel expenses up to £60 or more if you are agreed to participate in my study.

Your participation would be entirely voluntary. And If you are living out of London, We could do face to face Interview if you have plan to come London for attending your Appointment as most of Scleroderma patients are under treatment of Scleroderma Specialists at Royal Free Hospital, London and some people came to Royal free Hospital for illoprost.

Thank you for supporting me!

Sidra Chaudhry

Email: missgreat_19@yahoo.com

8 Replies

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  • Hi. I would be interested in helping out. I have Systemic Sclerosis (formally diffuse Scleroderma). I live in Derby. I was diagnosed in 2002. I am currently having a bad flare up after around five years in remission. If you want to contact me my email adress is gazea@outlook.com.

    I was formally a patient at the Royal Free Hospital after being referred there from Derby. I was seen by Proffesser Denton.

  • Hi Sidra,

    Good to hear that you are conducting a study on Scleroderma, I developed Myositis with a scleroderma overlap about 18 months ago. I was treated by a great team of doctors while in hospital in Berkshire, most of them had trained at the Royal Free.

    Unfortunately, I live too far away to attend interviews in London, travelling is difficult as I have dysphagia and have swallowing issues cos of the scleroderma, this makes traveling difficult. However I am happy to provide inform occasionally. I used to work for a Clinical Research organisation for 10 years so I understand the importance of collecting data for trials.

    Margaret

  • Hello Margret

    Thank you four post. I would like to hear from you if you can part of study.😊

  • Hi,

    I did send a private message to say I am interested but do not want to travel as I have mobility issues.

  • No singles? No males?

  • Sorry tim,:(

    Yup only female and who are in relationship,

    It is due to nature of methodology.

    But next time I will include single n male..

  • Males with the condition are not so common, so I understand methodological issues. You need a decent cohort.

    T

  • Yes, Tim I understand, and it is too tricky to find male with Scleroderma as compare to female

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