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Posted on Oct 13 2022 by Fiona Bailey

Getting to know the person behind their diagnosis of Huntington’s Disease (HD) is “fundamental” to delivering better care, according to new research.

Dr Vincent Harding, Forensic and Clinical Psychologist at St Andrew’s Healthcare, recently led a study which involved interviewing a number of healthcare assistants and registered nurses who regularly work with people who have this extremely rare, genetic neurodegenerative condition.

Prior to this work the experiences of staff supporting people with HD, particularly in inpatient settings had not been explored.

Dr Harding discovered two overarching themes, one of which showed the importance of getting to know the patient and what makes them tick.

He said: “What was really evident was the importance of seeing beyond the label, thinking about the person first and foremost, and the diagnosis second. That was fundamental in our learnings.

“As one of the people I interviewed put it, ‘their illness isn’t who they are. If you put the HD aside, you’re actually able to get to know them’.

“It was about trying to move away from a focus on the condition alone, and understanding the person. Understanding what they like, what they dislike, what they want, what they need, what their preferences are, and really doing everything we can in terms of person-centred care.

“By getting to understand the person and what’s important to them, we are able to meet them where they’re at.”

The study also highlighted thatapproaches to support was also important.

Dr Harding said: “It was apparent that enabling people to feel safe was very important, safety and trust is a massive thing, and the creation of a homely environment in order to meet the person’s psychological needs.

“It is about using every opportunity that presents itself and seeing everything you do as an intervention.

“So, if you're supporting somebody and getting them a drink, or you're supporting them with personal care, it's about making that a person-centred intervention, where you're factoring in the person's likes, their wants, their needs, and tailoring your intervention accordingly for them.

“We have quotes from staff which speak of their desire for people to feel safe around them, and about how every bit of time they have they want to spend with the patients, to help them feel safe and build that trust.”

The determination and perseverance that is needed in caring for HD patients was another salient point.

Dr Harding said: “Person-centred care is at the heart of this, and our team spoke of how the more you understand the person, the better level of care and overall experience they have.

“One of our team spoke about how ‘the next minute is a new minute, the next day is a new day, and you just carry on’. That really spoke to the need for resilience and the ability to repair any ruptures that might occur within relationships, particularly in the context of behaviours that challenge.

“But it became very apparent how our team think about the person behind the diagnosis and how they can support them at this time - taking each minute, each day, as a new moment.”

“The better we understand, the better we can support everybody - our team, our patients and our families and friends (partners in care).”

The research also revealed the fear and sadness that can be experienced within the team.

Dr Harding said there were “different emotions elicited during the interviews, including fear and sadness”.

He added: “Many of the participants I spoke to admitted they'd had preconceived ideas about what it might be like to work in an HD setting, they often spoke about being scared beforehand or anxious about working with people with HD.

“But once you've met one person with HD, you’ve met just ONE person with HD. What you read in the textbooks doesn't necessarily fit with what you're presented with on the ward.

“One of the participants said, ‘It’s very sad, but at the same time, it's very fulfilling’. And I think in lots of cases, people's expectations didn't necessarily meet their reality.

“There was that sadness, there was that fear, but that often changed over time.”

Dr Harding has given a full interview in the NR Times, which can be read here and for more information about HD services at St Andrew’s visit