MyQuality - Measure What Matters
Research type
Research Study
Full title
Supporting evidence-based practice in children's palliative care: how does the use of eHealth to facilitate communication about patients' values and priorities affect relationships between healthcare professionals and patients?
IRAS ID
213423
Contact name
Nicky Harris
Contact email
Sponsor organisation
University of the West of England
Duration of Study in the UK
1 years, 2 months, 31 days
Research summary
Effective communication is fundamental to the delivery of children’s palliative care. Children with life-limiting conditions and complex health care needs may require varying amounts of medical, nursing, psychological and/or social support to optimise their quality of life, and that of their families. It can be hard for professional staff to know what is most important for that child and family at any specific time, how best to support them, and whether their interventions have been helpful. An interactive website (MyQuality) has been developed to support families to identify their priorities, monitor change over time, and share this information with their healthcare professionals. This use of a website to support communication in palliative care is new and its effects have not been investigated thus far.
This qualitative study will explore know how using this website affects the way children, families, and the professionals supporting them work together. Children's palliative care teams in England or Wales will be invited use MyQuality during 2017/18 with children and young people on their caseload. Participating teams will be selected to represent the range of settings where care is delivered (home, hospital, and hospice). The study will involve asking children and young people over the age of 12 years to enter data onto a website; for those under the age of 12 and those whose cognitive levels would make the use of a website difficult, their families will be asked to participate on their behalf. The children/families will be asked to complete a short questionnaire when they begin using the website. A few months later the questionnaire will be repeated, and children/families will be interviewed about their experiences. Professionals participating in the study will be interviewed approximately six months after starting to use MyQuality, to gain their perspective on this model of communication.REC name
South West - Frenchay Research Ethics Committee
REC reference
17/SW/0208
Date of REC Opinion
29 May 2018
REC opinion
Further Information Favourable Opinion