Parent stories: experiences of caring for a child with complex needs
Research type
Research Study
Full title
Parent stories: experiences of caring for children with complex needs in the community
IRAS ID
254894
Contact name
Rosemary Godbold
Contact email
Sponsor organisation
University of Hertfordshire
Duration of Study in the UK
0 years, 8 months, 1 days
Research summary
I will interview parents of patients who are receiving care from the Community Children’s Nursing (CCN) team at East & North Hertfordshire NHS Trust. Participants will be invited to tell me the story of their experiences of parenting a child with long-term complex health needs in their own words during one interview. I intend to recruit 5 - 10 participants by invitation, following proposal by the CCN team. They will have a child who has complex health needs and are likely to be under the care of specialist centres, including a local children's hospice. The idea is to gain insight into what it is like to parent a child with complex needs at home: the impact on family life; how decisions are made; aspects of care that are good; what can be improved. During interview parents are given a chance to express what matters most to them. Participants will be excluded if their child’s health is unstable/deteriorating and/or their named nurse is the investigator. Inclusion criteria will be the physical and cognitive ability to be interviewed in English and give verbal and written informed consent. Bereaved parents who are still in contact with the service may also be invited to participate; they will be excluded if they have been recently bereaved. Written information and a consent form will be used, explaining the process with the option to opt-out at any time, and with data protection and confidentiality information. Personal identifiers will not be used when writing up/presenting the research. Interviews will be recorded by audio dictaphone if participants consent to this, solely to aid transcription and analysis. A leaflet will be given following interview to provide sign-posting to after care/support available. I am experienced in undertaking patient experience interviews and in having conversations with parents whose children are unwell.
REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
19/EE/0265
Date of REC Opinion
14 Jan 2020
REC opinion
Further Information Favourable Opinion