The ENCOMPASS Study
Meet the Team
HARP Doctoral Research Fellow
Kirsten Prest
Kirsten is a paediatric occupational therapist with an interest in supporting parents and carers of children with disabilities across a variety of contexts both in the UK and South Africa. She completed a Masters in Evidence-Based Healthcare at the University of Oxford where she conducted a study exploring the impact of play-based groups for children with cerebral palsy on maternal wellbeing.
Kirsten is now a doctoral student funded by HARP to complete the co-adaptation and pilot-testing of the Baby Ubuntu intervention in East London. She is based at City, University of London.
Supervisor
Professor Angela Harden
Angela is a social scientist with over 25 years experience in applied research to promote health and reduce inequalities. She is currently Professor of Health Sciences at City, University of London where she leads several research programmes developing and testing interventions targeting the wider social determinants of health. Her research spans the entire the life course, including the REACH Pregnancy programme which is developing and testing new social models of antenatal care in disadvantaged and ethnically diverse urban contexts, the Well Communities programme which is currently examining how to embed community development approaches in local authorities, and the Connect Hackney Ageing Better programme which is testing a suite of community activities to reduce loneliness and social isolation amongst older people. Angela is also the Academy Director of the NIHR North Thames ARC which develops research capacity for conducting and applying applied health research.
Supervisor
Professor Michelle Heys
Michelle is an Associate Professor in Community and Population Child Health at Great Ormond Street Institute of Child Health, University College London and Consultant Paediatrican and lead for research and population health, East London NHS Foundation Trust, London.
Michelle is passionate about improving global equity in child and adolescent health outcomes, about giving a voice to our most vulnerable and marginalised populations and to mobilising communities and innovation to improve the health of children and young people.
She is a Child Population Health Scientist combining clinical expertise in newborn and child health with expertise in public health practice and research, and in health services research and quality improvement. She has over 24 years of experience in clinical newborn and child health in the UK, Australia and Hong Kong; and during the last 17 years has combined clinical care with a growing portfolio of global child and adolescent population health research.
Supervisor
Dr Kirsten Barnicot
Kirsten is a Lecturer in Mental Health Services Research and the Programme Director for the MRes in Clinical Research at City, University of London. As a psychologist with a special interest in the prevention and treatment of inter-generational mental health difficulties, her research has particularly focussed on the experiences of people diagnosed with personality disorder who may be survivors of complex trauma, and on parent-infant interventions in the perinatal period. She joined City in 2020, having previously held NIHR Doctoral and Postdoctoral Fellowship positions at Queen Mary University of London and Imperial College London. She is currently co-leading a project aimed at improving recognition and differentiation of autism in women/ transwomen/ AFAB people who may otherwise be given a diagnosis of personality disorder, funded by the McPin Foundation/ Words That Carry On. She has recently completed two evaluations of adaptations of the video feedback intervention for positive parenting (VIPP) for mothers using perinatal mental health services: an NIHR-funded randomised controlled trial of VIPP for parents with enduring difficulties in managing emotions and relationships, consistent with a personality disorder, and a Barts Charity funded feasibility evaluation of the VIPP intervention adapted for young babies.
Advisory Team
Professor of Child Health Research
Professor Christopher Morris
PenCRU (Peninsula Childhood Disability Research Unit)
University of Exeter Medical School
Chris has broad experience with a variety of health services research methods applied in child health and disability research. He has a keen interest in evaluating parent carer-focused interventions. He led development of the Healthy Parent Carers programme
Research Assistant and Global Co-ordinator for Baby Ubuntu
Rachel Lassman
London School of Hygiene and Tropical Medicine
Rachel is an occupational therapist with over 20 years of clinical experience in the UK and Uganda. She is based in Uganda and has been living and working there for 10 years. She has worked on the Baby Ubuntu programme since its inception in 2015, supporting its design, training programmes, pilot and implementation in Uganda and Rwanda.
Senior Qualitative Researcher in Behavioural Science
Dr Aleksandra (Ola) Borek
Nuffield Department of Primary Care Health Sciences, University of Oxford
Ola's research focuses on using qualitative methods and behaviour change psychology to design, implement and evaluate interventions to promote health. This includes a range of interventions, e.g., to promote lifestyle-related behaviour changes, and behaviour changes related to preventing and managing common infections. She has a particular interest in group-based interventions, social processes, and adapting interventions to increase their uptake and implementation. She is on the Healthy Parent Carers programme team.
Associate Professor and Physiotherapist
Dr Tracey Smythe
International Centre for Evidence in Disability at LSHTM, Physiotherapy department at Stellenbosch University
Tracey is a physiotherapist with clinical experience developing, co-ordinating and delivering rehabilitation interventions and health worker training interventions in Australia, Brazil, countries in sub-Saharan Africa and the UK. She specialised in paediatric care, and her main work is with children with neurodevelopmental disorders and their families. Her research focus has been on the development of interventions to improve the quality of life of carers of children with multiple complex impairments, and in the design and analysis of before-after trials, cohort studies and cross sectional studies
Postdoctoral Research Fellow
Dr Phill Harniess
PenCRU (Peninsula Childhood Disability Research Unit) at University of Exeter Medical School
Orchid, Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability at Great Ormond Street Hospital for Children
Phill is a specialist paediatric physiotherapist with experience and research interest in parental partnership in early intervention for infants with neurodisability. He is currently working on:
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Healthy Parent Carers (HPC) research into exploring meaningful outcomes of parent carer health and wellbeing and accessibility of HPC through an equity orientation.
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Seen and Be Heard Study - exploring children and young people with/without learning disability and or who are autistic and experience of cancer care services through an equity lens (again)
Patient and Public Involvement (PPI) Advisor
Rachel Osbourne
Specialist Children and Young People's Services (SCYPS), East London NHS Foundation Trust
Rachel has been involved in local SEND advocacy within the East London Borough of Newham for several years. Her son was diagnosed with Cerebral Palsy in 2013, and it became evident to her that SEND health, social care, and educational provisions were insufficient.
Unfortunately, Rachel struggled for many years to get community SEND support services to engage properly and provide the correct support for her son. These challenges sparked her particular interest in 'Inclusion' and 'Ableism', and she began to use her lived experience to participate in local SEND quality improvement projects, sharing her experience of childrens SEND health and social care services to effect change.
Through her involvement with the Specialist Childrens and Young People's Services (SCYPS) People Participation Team, Rachel contributed to the initial Encompass study consultation in 2019, asserting that if such a programme was avaliable after her child had been diagnosed, she would have been better equipped to navigate her earlier journey as a parent-carer. Rachel strongly believes that providing parents and carers with holistic support, knowledge, and practical skills will not only empower them to navigate services, but also ensure they can meet their children's needs, and reduce associated depression and anxiety.
Today, Rachel works for SCYPS as a People Participation Worker, working closely with service users and their families to ensure their voices are heard in the planning and delivery of the service.
Patient and Public Involvement (PPI) Advisor
Alea Jannath
Person-Centred Active Support (PCAS) facilitator
I am a mother of a child with complex needs, my daughter is 12 years old and we live in Tower Hamlets. When my daughter was younger, I trained to be a befriender through SCOPE charity. This helped me to share my journey with other parents, carers and professionals and was a starting point for me wanting to help others. I have presented at a few conferences at Mile End Hospital and the British Library on ‘Learning through doing’. One was the Royal College of Occupational Therapist's Children and Young People Specialist Section conference. Because mine is a lived experience, it comes from the heart and that is very powerful. I learnt about Person-Centred Active Support (PCAS) when I was invited to attend a workshop. PCAS means for me and my family that my child with a disability can do things that are part of everyday life. I've been Co-trained to deliver PCAS, which was a new experience that I really enjoyed, I felt connected to other parents because I am coming from a parents point of view.
Neonatologist and Associate Professor
Dr Cally Tann
London School of Hygiene and Tropical Medicine
Cally is a South African-born, British-trained neonatologist, an Associate Professor at the London School of Hygiene and Tropical Medicine and Honorary Principal Scientist at the MRC/UVRI & LSHTM Uganda Research Unit in Entebbe. Her research work focuses on global neonatal health and early childhood outcomes and interventions. She has a particular interest in perinatal brain health, neurodevelopmental outcomes, and early intervention for children with developmental disabilities, particularly in Africa. She is the founder of the Baby Ubuntu programme, a participatory community-based parenting programme for young children less than 3 years of age with developmental disabilities in low resource settings. The Baby Ubuntu programme sits under the ‘Ubuntu- Hub’, a not-for-profit education and research hub at the International Centre for Evidence in Disability at LSHTM. She is on the coordinating committee of the International Society of Early Intervention and provides technical expertise to the World Health Organization in adapting the programme for global reach.