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Understanding and measuring resilience living with rare diseases

Faculty of Biology, Medicine and Health

About the Project

Research into the psychological impact of illness has highlighted the importance of resilience, which has driven an interest in developing interventions to support this. Rare diseases usually affect less than 1 in 2,000, but combined the incidence is 1 in 17. This means that approximately 3.5 million people in the UK will have a rare disease, representing a substantial number of patients and families trying to cope with this illness experience. Little is known about what enhances resilience in this group or even how best to measure it, making it difficult to assess whether interventions in this group have had a beneficial outcome. This PhD will seek to understand the mechanisms affecting resilience in rare diseases, in order to develop a measure of resilience for this group. This will be achieved by conducting a systematic review, in depth interviews with patients and their families and working alongside leaders in the field of genetic counselling, rare diseases and measurement construction. There is scope for the PhD student to shape many aspects of this PhD to fit with their interests.

Entry Requirements:

Candidates are expected to hold (or be about to obtain) a minimum upper second class honours degree (or equivalent) in Psychology. A Masters degree in a relevant subject and/or experience in health psychology is desirable.

For information on how to apply for this project, please visit the Faculty of Biology, Medicine and Health Doctoral Academy website (https://www.bmh.manchester.ac.uk/study/research/apply/). Informal enquiries may be made directly to the primary supervisor.

For international students we also offer a unique 4 year PhD programme that gives you the opportunity to undertake an accredited Teaching Certificate whilst carrying out an independent research project across a range of biological, medical and health sciences. For more information please visit http://www.internationalphd.manchester.ac.uk

Funding Notes

Applications are invited from self-funded students. This project has a Band 0 (Standard) fee. Details of our different fee bands can be found on our website (View Website). For information on how to apply for this project, please visit the Faculty of Biology, Medicine and Health Doctoral Academy website (View Website).

As an equal opportunities institution we welcome applicants from all sections of the community regardless of gender, ethnicity, disability, sexual orientation and transgender status. All appointments are made on merit.


Ghio, D., Thomson, W., Calam, R., Ulph, F., Baildham, E., Hyrich, K., Cordingley, L. (2018) The prioritisation of symptom beliefs over illness beliefs: the development and validation of the Pain Perception Questionnaire for Young People British Journal of Health Psychology, 23, 68-87. DOI: 10.1111/bjhp.12275

Ulph, F., Cullinan, T., Qureshi, N. & Kai, J. (2015) Parents’ responses to receiving sickle cell or cystic fibrosis carrier results for their child following newborn screening. European Journal of Human Genetics (2015) 23, 459–465; doi:10.1038/ejhg.2014.126;

Ulph, F., Cullinan, T., Qureshi, N. & Kai, J. (2014) Informing children of their newborn screening carrier result for sickle cell or cystic fibrosis: Qualitative study of parents' intentions, views and support needs. Journal of Genetic Counselling. 23:409-20. doi: 10.1007/s10897-013-9675-2

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