The Martin House Research Centre 2nd Biennial Research Conference - Friday 16th April 2021

The YouTube link to the full recorded conference is now available below: -

https://youtube.com/playlist?list=PLrNjdTIP91QH_qPEv5I_Sqge1qOABo0Ev

Conference Programme

The programme is available here:- Final Conference Programme with Talk Titles and Authors (PDF , 794kb)

Pre-recorded FULL Oral Presentations are available to view below:- A short overview talk for each of these was given LIVE on the day of the conference along with a Q&A session. Click the title of each presentation to access the YouTube video:-

10.10 am - Rapid Reports: brief presentations showcasing some of the Centre’s work with Q&A (10 minute pre-recorded videos below and single slide overview with LIVE Q&A on the day) Chairs: Dr Lucy Zeigler & Dr Susan Picton

Dr Andrew Papworth (Research Fellow, The Martin House Research Centre) - ‘The SWiCH study: a survey of staff wellbeing in UK children’s hospices’

Victoria Fisher (Research Trainee, The Martin House Research Centre) - ‘The experiences of fathers of children with a life-limiting condition: A systematic review and qualitative synthesis’

Dr Julia Hackett (Research Fellow, The Martin House Research Centre) – ‘Bereaved parents’ accounts of extended time with their child: a multi-site qualitative study of parents’ experiences of using cooling facilities provided by children’s hospices’

Dr Stuart Jarvis (Research Fellow, The Martin House Research Centre) – ‘Healthcare use when people with life-limiting conditions transition to adult care - a systematic review’

Dr Jo Taylor (Lecturer in Applied Health Research) – ‘Polypharmacy in children and young people with life-limiting conditions: an observational cohort study in England’

Dr Suzanne Mukherjee (Research Associate, The Martin House Research Centre) - ‘Patient reported experience measures: Why are they needed for children and young people with life-limiting conditions’

11.30 am - Oral presentations with Q&A (10 minute pre-recorded videos below and single slide overview with LIVE Q&A on the day) Chairs: Prof Lorna Fraser & Dr Lucy Zeigler

Archana Soman (Consultant Paediatrician, Sheffield Children’s NHS Foundation Trust & Bluebell Wood Children’s Hospice) – ‘Learning from Bereaved Families to Improve Children's Palliative Care: A Qualitative Study’

Mandy Brimble (Senior Lecturer & Professional Doctorate Student, Cardiff University) – ‘How do children's nurses working in hospices manage emotional labour and professional integrity in long term relationships with parents?’

George Peat (PhD Student, University of Leeds) – ‘An Interpretative Phenomenological Analysis of the role of social media in the lives of young men with Duchenne Muscular Dystrophy’

Wahida Kent (Lecturer, University of South Wales) - ‘Black and Minority Ethnic parents’ experiences of caring for a child with life-limiting conditions’

Dr Susie Lapwood (Senior Associate Specialist Emeritus, Helen and Douglas House Hospices) - ‘Creation of the Oxford Centre for Evidence Based Medicine Covid-19 palliative care group. What can we learn? A silver lining from the Covid cloud?’

Nicky Harris (PhD Student, University of West England (UWE), Bristol) - ‘Harnessing modern communications technology to deliver person-centred care for children with life-limiting conditions – what works, for whom, under what circumstances, and why?’

2.00 pm - Oral presentations with Q&A (10 minute pre-recorded videos below and single slide overview with LIVE Q&A on the day) Chairs: Dr Bob Phillips & Prof Bryony Beresford

Eleanor Willis (Children’s Complex Care Nurse Specialist, East & North Hertfordshire NHS Trust) - ‘What matters most in care and decision-making for children with complex needs: mothers’ perspectives’

Louise Worswick (Research Fellow, University of Southampton) – ‘Developing ‘Views of Informal Carers – Evaluation of Services’ for children (VOICES-C): results from the expert consultation with healthcare professionals’

Marie Friedel (Researcher, Institute of Health & Society-UCLouvain, Belgium) ‘Face and content validity, acceptability and feasibility of the adapted version of the Children’s Palliative Outcome Scale version 2(CPOS-2): a qualitative pilot study’

Emily Parsons (Senior Staff Nurse, Guys and St Thomas’ NHS Trust) – ‘Parents’ perspectives on conflict in paediatric healthcare: a scoping review’

Vicky Kammin (The Martin House Research Centre, PhD Student) - ‘Rocks and Pebbles’: exploring professionals experiences of collaborative working with bereaved siblings groups in paediatric palliative care’

Further Information is available here:- Further Conference Information (PDF , 720kb)

The Martin House Research Centre’s second research conference on the care and support of children, young people and young adults living with a life-limiting condition and/or medical complexity.

Aims of the conference

to provide forum at which current and recently completed research can be shared and discussed;
to offer an opportunity to consider the implications of those findings for service design, practice and future research;
to develop delegates’ knowledge and understanding of PPI across the research process;
to provide a forum for connection and exchange between the research and practitioner/provider communities.

Who is the conference for?

Research students
Researchers and academics
Professionals working with children with life-limiting conditions and/or in the children’s/young adult palliative care sector who are interested in getting involved in research or using research evidence.

Contact us

If you have any queries, please contact Michelle Scaife, our Centre Administrator:

Email: michelle.scaife@york.ac.uk or mhrc@york.ac.uk
Telephone: 01904 321314

@UoYmhrc #MHRCConf21