Thesis Whisperer visit and Editorial Work!

I’ve been heavily focused on my work recently and really considered the advice someone gave me – consider the benefit to your career, vs the energy. Sometimes unpaid work is more beneficial to you than something paid that doesn’t contribute long term.

Inger Mewburn

Speaking of this, I mentioned in my last post that Inger Mewburn had kindly taken time out of her sabbatical to visit us at University of Gloucestershire and talk to the PGR group. We’re super grateful for that, because it brings a new perspective, particularly on the message around not burning yourself to the ground in your work!

Photo of Inger Mewburn in front of a screen reading Kicking the can down the road or how to create research impact in seven (not so easy) steps.

The book she recently published with Simon Clews has been really helpful to me in considering the ways I make my work visible. I think I am practically becoming a bore about it, since my discoveries are blowing my mind! So things in the book like the suggestion of turning your work into a lecture and pimping it out that way, or how to pitch for money were super helpful! Do read this book, if you are a PhD or ECR.

I think it can be daunting to look at a career like Inger’s from the position of ECR. The amount she generates and the things she has achieved can look impossible, until you think that she did it one step at a time and didn’t leap out of her mother’s womb as a fully formed researcher. I said to students yesterday that everybody’s first draft is absolutely rubbish and you only ever see the end result. Don’t judge the end product of someone else’s labour with the labour you are doing to create an end product.

Editorial Work

I have recently had the honour of being asked to be an editor on a journal – this is one of the opportunities where I weighed up the benefit of time and energy invested vs the benefit to my career. In this case, I think it is a great journal and their peer-review process was amazing – my article was published before the other one I have submitted had even got to peer-review! (that one still doesn’t have any sign anyone has looked at it at all)

The journal is the Journal of Haemophilia Practice; it is targetted at nurses and allied health in the specialty, with encouragement to submit those articles that other journals might not find interesting but those professionals do. It has been going around ten years and is a really lovely community of practice, with some incredible work being published there. It is open access, which is important to me, and the editors are really responsive and open to discussion.

I was a little struck by imposture syndrome – I am not a specialist nurse and my connection to the haemophilia community is a familial link, with my PhD focussing on the impact of the contaminated blood scandal. I don’t have much social media reach, having fled from twitter under the increasingly right wing influence. But I do believe in the journal and, if I can only contribute a few articles and some conversations, then that is time worth spending.

PhD Poster Competition

I entered University of Gloucestershire’s poster competition this year, mostly as a way to condense my topic into a brief summary. This was MUCH harder than I anticipated – there is a lot to pack in!

I did not win but the competition was amazing – the people had such a variety of topics and almost everyone compared themselves to the others and felt daunted by it. I think my learning is that I need to pick ONE of my methods and reduce words considerably! That said, I am not sure how.

On a personal note I have not sewn recently since the building work will bring with it dust and chaos, which I think is not ideal for fabrics to be here for!

Bleedin' Liars:
The contaminated blood scandal was a major public health disaster that occurred in the United Kingdom and other countries in the 1970s and 1980s. The scandal involved the transmission of HIV and hepatitis C to patients with haemophilia through contaminated blood products. The scandal had a devastating impact on the lives of haemophiliacs and their families, and it continues to have a legacy of suffering and loss, with Governmental responses described by Leveton et al. as “the least aggressive option that was
justifiable” and meant that the speed of transmission through the haemophilia population was not slowed.

This poster presentation will explore the intergenerational impact of the contaminated blood scandal on the adult children of haemophiliacs. It will discuss the methodology and impact of a study into the ways in which the scandal has affected their lives.

Sally-Anne Wherry

Semi-structured interviews with 20 participants who are the adult children of affected haemophiliacs. Once the data has been collated into a single body, for the purpose of this research I will be drawing on approaches to Thematic Analysis. This would be used to allow themes to be interpreted from the data in an inductive manner, where data is open-coded and respondent/data-based meanings will be emphasised. I will use a variant of the six-phase analytical process defined by Braun and Clarke (2021)

With the limited focus and understanding of the experiences and impact for this group of people, full understanding of the CBS cannot be gained. The paucity of information in written, published sources demonstrates that ripples continue to spread across the generations and requires that we pay attention to this intergenerational iatrogenic harm, allowing those stories to be told. 

This research will tell these stories and explore the impact on relationships with healthcare professionals.
The contaminated blood scandal was a major public health disaster that has had a devastating impact on the lives of haemophiliacs and their families. The adult children of haemophiliacs have faced a number of challenges in accessing support and compensation. They are continuing to fight for justice and to raise awareness of the scandal. 

This research gives insights to the impact on their lives, through semi-structured interviews and exo-autoethnography. It will highlight the ways in which their lives were changed by the biggest treatment scandal within the NHS.
Rational and Aims
This study aims to capture the experiences and emotions related to the contaminated blood scandal in the children of haemophiliacs. It aims to explore experiences and emotions. It will also explore the impact on trust in healthcare professionals that adult children of haemophiliacs who were affected by the contaminated blood scandal have and whether it has impacted the way that they work with healthcare professionals?
The Intergenerational Impact of the Contaminated Blood Scandal
Haemophilia is a bleeding disorder, where the clotting cascade is disrupted (Normark, 2019). A treatment called factor concentrate was created by taking plasma from up to 40,000 donors, pooling it, and concentrating it (Resnik, 1999); this process increases the risk of blood borne diseases for the recipient, resulting in hepatitis and HIV appearing in hemophiliacs (Resnik, 1999).

Estimates place the infection rate at 25,000 people (The Haemophilia Society, 2021). This, known as the contaminated blood scandal (CBS), left deep scars, with a whole generation affected. This lost generation left children who had either lost one or both of their parents or lived with parents who were infected by hepatitis, HIV or AIDS.

Exo-Autoethnography, which focuses on the meaning of the transgenerational experience I have had and will have as researcher and daughter of a haemophiliac infected during the contaminated blood scandal, including the cultural and social context of that experience. This will be an ongoing process throughout the research, during which I document my own experiences and feelings in a reflexive manner (Denejkina, 2021, pg. 9).

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