The views of bereaved parents and HCPs to evaluate VOICES-C
Research type
Research Study
Full title
The Paediatric version (VOICES-C) of the Views of Informal Carers Evaluation Survey-Short Form (VOICES-SF): Views of Health Professionals and pilot-testing with bereaved parents.
IRAS ID
259175
Contact name
Anne-Sophie Darlington
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
0 years, 7 months, 1 days
Research summary
While care and treatment for children has improved enormously over the last decade, children and young people still die. Care at the end of life (EOL) is crucial to ensure that the child and family have the best possible quality of life. At the moment we do not have organised processes in place to evaluate the care at the EOL for children. It is really important that we ask bereaved parents about their experiences of EOL care. Good EOL care can mean better quality of life for bereaved parents. Therefore we need to understand the quality and the services of EOL care provided to children by assessing it, however currently there is no way of doing this. A questionnaire, VOICES (Views of Informal Carers Evaluation Survey), is being used to access quality of care for adults. We have carefully adapted this questionnaire to make it applicable for bereaved parents to respond to so that EOL for children can be assessed. To make sure that the questionnaire is good enough to assess EOL for children we need to test it. To do this, we are asking healthcare professionals involved in the EOL care for children, and also parents of bereaved children, to read through the questionnaire and make comments of each of the questions. Also, we would like to know from them if they feel that any questions are missing, or if some questions need to be removed. After this, using the feedback from the healthcare professionals and bereaved parents we will improve the questionnaire to make sure it is appropriate.
REC name
North of Scotland Research Ethics Committee 1
REC reference
19/NS/0067
Date of REC Opinion
17 May 2019
REC opinion
Further Information Favourable Opinion