Enhance
Research type
Research Study
Full title
Enhancing resilience and self-efficacy in the families of children with complex health needs and disabilities: sharing and embedding lessons from the Family Nurse partnership
IRAS ID
172307
Contact name
Mark Whiting
Contact email
Sponsor organisation
University of Hertfordshire
Clinicaltrials.gov Identifier
15/EE/0129, East of England - Cambridgeshire and Hertfordshire
Duration of Study in the UK
0 years, 11 months, 5 days
Research summary
This research study aims to develop and test a brief structured programme for parents of children with disabilities and complex health needs in order to help them, as parents, develop resilience and self-efficacy in order to cope with their new caring role. (Within this study ‘resilience’ relates to the ability to ‘bounce back’ in the face of difficult circumstances, and ‘self-efficacy’ is about having abilities and, particularly, having belief in one’s own abilities.)
The intervention programme will comprise 6 x half-hour sessions of focused discussions and straightforward exercises. Each session will be delivered, approximately fortnightly to the parent/main caregiver by the Community Children’s Nurse (CCN) who is already familiar with the family and who will act as a co-researcher in the project. Five CCNs will be recruited for the study and trained as co-researchers. Each CCN will seek to recruit parents from 4-5 families. Participants in the study are therefore not patients, but the parents of patients. Based on research and drawing upon learning from the Family Nurse Partnership approach, the programme will cover four aspects of the parent’s changed role: managing emotions, practical coping, support networks, and 'you and your child'. An action learning approach will facilitate 'within-study' development of the intervention programme.
In addition to taking part in the programme, participants will be asked to complete two multiple-choice questionnaires at the beginning and the end of the programme to examine its effectiveness. They will also be asked to comment through two short interviews (1 x 10 mins and 1 x 30 min) on how acceptable and suitable they found the programme in order to inform its future development. CCNs will be interviewed for their views of the whole process and the programme content.
REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
15/EE/0129
Date of REC Opinion
5 May 2015
REC opinion
Further Information Favourable Opinion