Huntington
Disease
In focus
"The better we understand, the
better we can support everybody -
our team, our patients and our friends (partners in care)."
That sentiment is at the heart of pioneering research into Huntington’s Disease (HD) care, which explores the experiences of healthcare assistants and registered nurses - those delivering frontline care - and the relationships they build with people living with HD and their families in an inpatient setting.
Huntington’s Disease (HD) is a relatively rare hereditary progressive neurodegenerative condition. Its onset is most common in middle age, and its effects are wide-ranging, changing how people think, feel, speak, move, swallow, and eat, which can often require professional care.
Whilst research is underway across the world, there remains no cure at present and the profile and understanding of HD in wider society leaves room for improvement. There is, however, much that can be done to support the person to live well with HD.
By interviewing a number of healthcare assistants and registered nurses working with people with Huntington’s Disease, Dr Vincent Harding, Forensic and Clinical Psychologist at St Andrew’s Healthcare has gained unparalleled insight into the experience of relationships with people with HD and their families. Here, Dr Harding discusses how this helps St Andrew’s to improve experiences and outcomes for all.
Research found that the experiences of staff supporting people with HD, particularly in inpatient settings had not been explored. St Andrew’s, a specialist provider of HD care identified the need to assess the psychosocial impact of working in such an environment, to gain improved insight into lived experiences of working with people with HD and their families.
“This process has helped our staff to feel heard and validated, for them to share their experiences without fear or judgement,” says Dr Harding.
“It really provided that space for them to reflect on what it's like to work with people with HD, and their families, and what thoughts and feelings that can evoke for them.
“And for us as a team, and as a service, we then have a better understanding about those things. This enables us to better support our staff, our patients, and their partners in care.”
The research revealed two overarching themes from the healthcare assistants and nurses involved in the study at the specialist HD service in Northampton, which is home to patients from across the country.
What it takes to work with people with HD
Getting to know the person behind the diagnosis was a key factor, says Dr Harding. “What was really evident was the importance of seeing beyond the label, thinking about the person first and foremost, and the diagnosis second,” he says.
“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.”
Approaches to support was another key theme. “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,” says Dr Harding.
“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.
“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,” says Dr Harding.
“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.”
“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,” says Dr Harding.
The emotional experiences of working with people with HD
The role the staff play in the lives of patients was keenly felt, says Dr Harding.
“As one participant said, ‘We're friends, we're family, we're nurses, we're everything to them’. And I think that shows how deeply we are committed to creating this trusting environment for people,” he says.
“Some families are quite heavily involved in that person's care, and some less so - that might be because of physical distance and geography, or it might be because of the hereditary nature of HD, which can affect families in different ways, whether or not they have a diagnosis themselves.
“And I think partly because of that, this setting is very different to many other inpatient settings. In our HD care, it’s much more holistic.
“To patients, they might see us as ‘family’ because they're living with us 24 hours a day, seven days a week.
“One of our team spoke about how it’s important to give professional support, but friendly support. They spoke of how they are aware they are ‘someone to confide in, someone to share your problems with, [seeing] them at their worst and at their best’ - that is a hugely important role to play in someone’s life.”
The research also revealed the fear and sadness that can be experienced within the team. “There were different emotions elicited during the interviews, including fear and sadness,” says Dr Harding.
“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.
Outcomes
The greater understanding of the psychosocial experiences and feelings within the team is enabling St Andrew’s to build on the support they already provide.
“I think it's really about doing more of what we've already been doing,” says Dr Harding.
“For our healthcare assistants and nurses, it’s about providing spaces for them to be able to reflect on their experiences and learn from them. As a psychologist, that is a big part of my role to provide regular opportunities for the whole ward team for reflective practice. It’s important we all, individually and collectively, think about what we can do more of or differently.
“By doing this, we can improve outcomes and experiences for the patient and their families and friends.
“When families and friends are involved, we work with them as equal partners in care. We work closely with them, on their terms, actively seeking their views and working together to improve outcomes and experiences for them, their relative or friend, and the clinical teams.
“I think this research can only help our ability to create these partnerships in care. Through gaining this rich qualitative information, we are expanding the evidence base, which will give new levels of insight to others working at St Andrew’s.”
Dr Harding’s research has been shared internally within St Andrew’s, with a view to being published in a peer-reviewed journal.
“While this has been used to good effect in-house, I think it would be helpful to publish this more widely to help others in similar settings to consider their clinical practice, their ways of working, and their experiences,” says Dr Harding.
“There is further need to replicate this research in community HD care settings, and to consider the voices of other allied healthcare professionals.
“We could also look to extend the research to speak with the person with the diagnosis themselves, when they come into a setting like St Andrew’s, and the experience of family members when that happens.
“The work I completed was a time-limited piece of research, but something that might be helpful in the future is to consider a longitudinal study which explores the dynamic nature of relationships over time and how these might change.
“They are some of the research avenues I’d like to pursue in time, working with colleagues here, to further expand the research and evidence base in relation to HD.”
To find out more about specialist HD care at
St Andrew’s please visit: stah.org/HD
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