THE TWO SIDES OF RESEARCH

GOSH is dedicated to giving children in its care the best possible outcomes. Pioneer explores how its individual-led research programmes are helping improve the patient experience.

Pioneering research, leading to new treatments and cures for some of the most complex childhood conditions, has been at the epicentre of Great Ormond Street Hospital’s (GOSH) work throughout its almost 170-year history.

It’s achieved breakthrough after breakthrough, alongside its research partner UCL Great Ormond Street Institute of Child Health (ICH) and others. And funding these research programmes remains a priority for Great Ormond Street Hospital Children’s Charity (GOSH Charity).

Equally key, however, is the hospital’s dedication to an all-round holistic approach to the care of its patients – and that means truly understanding what impact illness and disability has on children and young people.

This is where individual-led research programmes step in, enriching the world-class clinical care the hospital offers.

INTRODUCING ORCHID

Leading the way in individual-led research programmes at GOSH is its Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID). A dedicated research unit at the hospital comprising experienced senior researchers from nursing, allied health and the social sciences, the centre’s main work is to conduct child and family focused research. It does this through a range of quantitative and qualitative research studies, all working towards delivering better patient experiences.

NIHR GOSH Biomedical Research Centre (NIHR GOSH BRC) Clinical Academic Programme Lead based in ORCHID, Dr Polly Livermore, is a dedicated advocate for nursing and allied health professional clinical research. Having worked at GOSH since 1997 – as a rheumatology nurse, research nurse and matron – she studied for her National Institute for Health Research (NIHR) funded PhD, supported by ORCHID, researching psychological support for children with a rare, rheumatological condition called juvenile dermatomyositis (JDM). Dr Livermore now splits her matron role with her role at ORCHID, supporting people in the Trust who might have research questions in their specialty areas and directing

LUKE’S STORY

ORCHID Senior Research Fellow and GOSH Speech and Language Therapist Dr Debbie Sell worked with Luke, who was diagnosed with Apert syndrome, on speech therapy at GOSH. Looking to find out if parent-led speech therapy for children with cleft palates would be a positive step for patients, Dr Sell invited Luke’s family to participate in a research study, that has since led to the launch of www. speechathome.org. Luke’s mum Jacintha tells Pioneer why she feels this type of research is so valuable.

“Our journey at GOSH began when Luke was just three days old. When I was pregnant with him, we knew there’d be complications – the sutures in his skull were joined and we knew his facial bones would grow more slowly. But just after he was born he stopped breathing and was rushed to the intensive care unit at GOSH. He was on a ventilator for around two months and had an operation to correct his aorta at 10 days old; he was extremely poorly. Since then, because of his condition, he’s had regular appointments with the GOSH cranio-facial team, which includes audiology, ophthalmology and orthotics.

“As he was born with a cleft palate, which affected his speech, he had a lot of speech therapy at GOSH and that’s where we met Dr Sell, who asked if would be interested in taking part in a research study to see if parents could learn how to help their children with speech therapy at home.” As part of the research study, Jacintha undertook training under the supervision of a therapist and then worked with Luke on what she’d learnt; both Jacintha and Luke found it to be a positive experience.

Jacintha adds: “I’d recommend other families take part in research studies if they’re available, it was so helpful to us and is great for the overall patient experience.”

Luke now

Luke is now 11 and loves sport, especially football – Harry Kane is his favourite player – and he really loves maths! He’s just started secondary school, which was really emotional for us; he’s done so well and doesn’t need a one-to-one helper; and I believe that’s because he received such excellent care at GOSH. He’s fiercely independent and using the skills he’s been given through his therapy at the hospital and what we’ve able to do at home, following the research study. Luke is a product of excellent care, thanks to the multi-disciplinary teams working together at GOSH.”

them how to investigate their questions. She also leads on the BRC’s funded internship scheme, which runs annually and provides weekly teaching sessions to help future clinical research leaders apply for external funding to be able to answer their research questions.

“Nursing- and allied health professional-led research (such as physiotherapists, dieticians and many more professional groups) is just as important as medically led research – especially as GOSH is a research hospital,” Dr Livermore says. “We should be encouraging and supporting all staff to question the evidence out there and think about how to improve practice. If all of GOSH is thinking, challenging and questioning, if we can encourage everyone to get involved and be aware of what research is happening out there, we can talk more effectively to families about how it can help improve their patient experience. It’s been proven that a research-minded hospital does better with outcomes, and this is also high on the agenda for the Care Quality Commission [the independent regulator of all health and social care services in England].”

PATIENT INVOLVEMENT IN CARE

Research undertaken by researchers at ORCHID explore the experiences of the children and young people at GOSH and uses different research methodologies for different ages. “For example, in my PhD research I used a methodology called phenomenology, which gives children the opportunity to share how they really feel about living with their condition (in this case JDM). I gave them cardboard body maps to draw and write

Dr Polly Livermore

on, explaining how they experienced their illness,” she says. “For example, one girl drew some scales because she’d lost weight and drew a chair because she couldn’t stand. The children were so pleased that someone had asked them what it was like to live with their condition, they wanted to share their stories and improve things for other future patients.

“The children’s stories were always heartfelt and it’s emotional hearing about their journeys and experience. And then it’s about how we present those experiences back to clinicians. For example, I began to create poems from their interviews – they are all using the children’s own words and represented like this they are very powerful. I presented these at a conference and I was approached by a doctor who said he only used to ask the parents how the child was, often because the children would look at the floor and not want to join in during clinic appointments. Now though, he would make more of an effort to talk to the children and really find out how they are and what he can do to help them.” Various research methods are used by researchers across ORCHID. Dr Livermore highlights the work of Professor Faith Gibson, ORCHID’s lead and GOSH Director of Research for Nursing and Allied Health at GOSH and Professor of Child Health and Cancer Care at Surrey University, who has used many innovative and creative ways to conduct research and share research findings. These include using puppets to communicate with four- to five-year olds undergoing cancer treatment and a collaborative theatre performance to share the findings from a research study looking at cancer care. Senior ORCHID Research Fellow and Consultant Nurse for Learning Disabilities Dr Kate Oulton has worked tirelessly conducting research with children with learning disabilities. In one study, for example, children decorated money boxes based on a key like and dislike (e.g. favourite/ least favourite colour or football club) to represent ‘good’ and ‘bad’ and then selected hospital flashcards to put into each as a way of sharing their views and experiences.

“One of the great things about ORCHID is it’s so collaborative and works hard to bring everyone across GOSH together,” Dr Livermore adds. “The big funded clinical studies are brilliant, but there’s set criteria about who can go into these. Nurses and allied health professionals, who are working on the wards, have their own questions that arise out of their day-to-day work, often about better ways of delivering care or ideas about how to improve practice. Asking appropriate questions will help us all improve the care we give. We also work closely with the GOSH Learning Academy [part-funded by GOSH Charity] to achieve this and it’s about giving everyone in the Trust the opportunity to undertake research in their areas.”

CHARITY FUNDING MAKING IT POSSIBLE

Research opportunities through ORCHID are also thanks, in part, to GOSH Charity funding. GOSH nurse Pippa Sipanoun is currently undertaking a research study, supported by the charity, looking into patients’ experiences of GOSH’s electronic patient record Epic, which itself is charity funded. And Dr Livermore herself has received a scholarship award funded through the charity to take her research into the next stages.

“We want to say a huge thank you to GOSH Charity. It means the world to be able to undertake research to improve experiences for children and young people as they go through a worrying time, and we’re so grateful to all the charity’s supporters.”