VOICES-C - Evaluating end of life care services for children
Research type
Research Study
Full title
The Paediatric version (VOICES-C) of the Views of Informal Carers Evaluation Survey-Short Form (VOICES-SF): Pilot testing of the VOICES-C questionnaire
IRAS ID
303200
Contact name
Anne-Sophie Darlington
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 0 months, 28 days
Research summary
The VOICES-Short Form (Views of Informal Carers - Evaluation of Services) questionnaire was designed to evaluate the health and social care provided to adults in the last months of life, from the perspective of bereaved families and friends. VOICES-SF is widely used to measure the experience of end of life care in adults. Our team has adapted this tool for use around end of life care for children.
We developed a version of the VOICES questionnaire for children, using the views of bereaved parents and of healthcare professionals who provide end of life care for children. We did this by undertaking qualitative research interviews with these groups and adapting the VOICES questionnaire based on their feedback.
Taking a feasibility approach, this new study aims to pilot the final version of the VOICES-C questionnaire to assess its effectiveness in capturing information about the quality of end of life care for children.
This study will ask whether the VOICES-C questionnaire is feasible to assess quality of care for children at end of life. It will also explore the views of bereaved parents of the quality of care at end of life for their child.
We plan to deliver the questionnaire to bereaved parents using a postal survey approach, asking them to complete and return the questionnaire to the research team at Southampton University. Bereaved parents will be identified through our contacts in the Neonatal Intensive Care Unit and Paediatric Intensive Care Unit in University Hospital Southampton NHS Trust and in Naomi House Children’s Hospice.
We hope the learning from this pilot and feasibility study will enable us to make a funding application to the National Institute for Health Research to deliver the study on a wider scale to capture a wider perspective on the quality of children’s end of life care.
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
22/SC/0014
Date of REC Opinion
18 Jan 2022
REC opinion
Favourable Opinion