Doctoral research: funding difficulties and creating change

at Dr. Dr Nicola Dunlop RGN @NicolaDunlop13

Before Covid 19, researchers weren’t typically regarded as change leaders, but that is exactly what I achieved with this study. As an authority in benign primary blepharospasm (BEB), I felt compelled to reply to research and reorganize care and treatment. The BEB condition causes bilateral eyelid muscle spasms, intermittent blinking, and/or everlasting eye closure, which could be disabling (DeFazio, 2017) within the primarily older population I see. It is a progressive disease and subtypes may develop within the lower face and neck. Botulinum toxin treatment plays a significant role in improving quality of life (Hellman and Torres-Russotto 2015). However, it only provides temporary relief and the rationale for various effectiveness and duration is unknown (Jinnah et al., 2013). However, a shorter treatment course of 6 weeks was considered clinically secure (Jankovic et al., 2011). Patient feedback shows that the care provided often doesn’t meet individual needs when required. The latter was enough motivation for me to vary something. Therefore, I examined the impact of premature care and treatment for individuals with BEB experiences. As a novice researcher, this experience provided a wealth of data.

In my opinion, all that was required was university approval, sponsorship or payment for it, research and writing of the study. I used to be fallacious. As the primary nurse to use for PhD research funding at Moorfields Eye Hospital, my knowledge of research portfolio funding on the Trust was, to be honest, quite limited. Obtaining payment for the course was no problem, however the challenge was financing the actual research portfolio.

Although the University and Trust ethics were approved with no funded portfolio, I used to be unable to begin my studies. Moorfields Eye Charity doesn’t provide PhD scholarships to nurses or optometrists. I met with the charity and expressed this concern. Although the necessity was emphasized, the present protocol wouldn’t allow funding for my study, but changes were promised. The pledge I made didn’t address my current financial situation or the stagnation in my studies.

Searching the Internet, I quickly realized that there was an absence of funding for nursing research and funding sources available through the Royal College of Nursing had closed. The Fight for Sight Grant shall be available in 6 months. It was extremely competitive, which meant there have been no guarantees. Besides, I did not have time to attend. At roughly 11:37 a.m. 31^street January 2018 I discovered a call from Burdett Nursing Trust, a brief application offering £7,700. I used to be euphoric and used it immediately. I did it and managed to finance the research. Just organising the administration of the research portfolio cost £2,000, a brand new study computer £1,700, the price of a voice recorder for participants £50, printing £419 plus participant costs £64. A complete of £2,767 stays for conferences, travel, publication and dissemination of the study.

Indirectly, my research contributed to a funding call for PhD students from the Moorfields Eye Charity. Importantly, the Burdett Nursing Trust, the primary external research trust for a nurse at Moorfields Eye Hospital, really enabled me to conduct my research and the outcomes it achieved.

The study adopted an interpretivist phenomenological approach, involving interviews and a spotlight group exploring the thoughts, feelings and emotions of ten BEB participants. Reflective questions were asked about: the diagnostic pathway, treatment and care in each primary and secondary care, what it means to live with BEB and what needs to vary to enhance the standard of services.

After careful evaluation of the transcribed interviews and field notes, five overarching themes emerged from the info: (1) Lack of data; (2) Extremely debilitating condition; (3) Fleeting normality; (4) Loss of social wealth; and (5) Fighting for appropriate care.

Introducing holistic, individualized follow-up visits through patient-initiated follow-up visits, patient assessments via video clinics to facilitate more supportive, effective and efficient treatment. More nurse-led clinics to scale back geographic disparities. Universal training of all people injecting medicines to make sure uniform care and treatment. It also provided electronic documentation of patient records. An extra change expected is to handle delayed referral by forwarding the BEB red flag list to Primary Care and a longtime point of interest frequently reasonably than Additionally focus group.

Due to the paucity of data about BEB disease, this study called for increased knowledge amongst health care professionals in caring roles and in society at large. However, patients must also take responsibility and take a proactive approach to scale back delays in diagnosis and speed up care to forestall deterioration of vision, physical and mental health. There is a call for greater collaboration with patients across primary and secondary care and for the redesign of services, which is now a reality not only at Moorfields Eye Hospital but across the UK.

Defazio, G., Hallett, M., Jinnah, H. A., Conte, A., and Berardelli, A. (2017). Blepharospasm 40 years later. Movement Disorders: Official Journal of the Movement Disorders Society, 32(4), 498-509. https://doi.org/10.1002/mds.26934

Hellman, A., and Torres-Russotto, D. (2015). BTX within the treatment of blepharospasm: current evidence and up to date developments. Therapeutic Advances in Neurological Disorders, 8(2), 82-91. https://doi.org/10.1177/1756285614557475

Jankovic, J., Comella, C., Hanschmann, A., and Grafe, S. (2011). Efficacy and safety of incobotulinum toxin A (NT 201, Xeomin) within the treatment of blepharospasm: a randomized trial. Movement Disorders: Official Journal of the Movement Disorders Society, 26(8), 1521-1528. https://doi.org/10.1002/mds.23658

Jinnah, H. A., Berardelli, A., Comella, C., Defazio, G., Delong, M. R., Factor, S., Galpern, W. R., Hallett, M., Ludlow, C. L., Perlmutter, J. S., Rosen, A. R. and Researchers Dystonia Coalition (2013). Focal dystonias: current views and challenges for future research. Movement Disorders: Official Journal of the Movement Disorders Society, 28(7), 926-943. https://doi.org/10.1002/mds.25567

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