Parental coping and quality of care for children with acomplex illness
Research type
Research Study
Full title
Parental coping and quality of care for children with a complex illness in the palliative and end of life phase
IRAS ID
185581
Contact name
Anne-Sophie Emma Darlington
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 3 months, 10 days
Research summary
Caring for a child with life-limiting or life-threatening illness in the palliative phase or at the end of life is an overwhelming task for parents. In the palliative phase, parents have to manage the child’s medical care, communication with health professionals, disruption in their role within the family, disruption in routines, financial implications and most importantly the imminent death. This care workload (organizing and providing care, and advocating for their child) impacts hugely on the time they can spend with their child and family. There is a lack of knowledge about the shape, extent and impact of this practical and emotional workload, which means services are unlikely to be able to fully meet support needs of families or ensure the child can die at home if that is their preference. In addition, no measures are currently available to evaluate the quality of palliative and end of life care for children.
Therefore the study centres around two aims: 1) to investigate the burden and caring for a child at the end of life, by focusing on parents' practical and emotional work. that parents do, and 2) what aspects of care are important to parents. We will work towards developing tools that can be used in clinical practice and with bereaved parents.
22 parents with a child in the palliative phase and 30 bereaved parents will be interviewed to get an insight into the aspects that are important to them. Ten Health Care Professionals will also be interviewed. These interviews will be read to find themes which can be used to develop tools that clinicians and researchers can use to ultimately improve care.
REC name
South Central - Oxford C Research Ethics Committee
REC reference
15/SC/0492
Date of REC Opinion
11 Sep 2015
REC opinion
Favourable Opinion