Lived experience of parents caring for a child with breathlessness, v1
Research type
Research Study
Full title
The lived experience of parents caring for a child or young person with breathlessness receiving palliative care
IRAS ID
198626
Contact name
June Hemsley
Contact email
Sponsor organisation
London South Bank University
Duration of Study in the UK
0 years, 7 months, 24 days
Research summary
This study will focus on how parents perceive their child's experience of breathlessness, what influences their ability to support their child and explore whether parents have any unmet needs, such as information or care needs. The vast majority of paediatric palliative care research has been concerned with exploring place of death, the palliative care experience, and the frequency of symptoms at the end of life focusing predominantly on the child with cancer (Beretta et al 2010). There is a dearth of research exploring symptom experience, in this case breathlessness, as observed by parents’ caring for a child receiving palliative care. In practice, the care of a child's breathlessness particularly when they are being nursed at home falls heavily to parents.
It is unknown what caring for a child with breathlessness at home is like. To explore this 5-10 parents of a child with breathlessness, will be interviewed. These families will be known to a London-based tertiary specialist palliative care team. Using a qualitative research approach, phenomenology, the study will explore what it is like from an ‘insider's’ perspective to care for a child with breathlessness at the end of life. Data will be analysed using a descriptive phenomenological process described by Giorgi (2009). The study hopes to discover meanings parents attach to their experiences. The study forms part of a Masters degree in Children’s Advanced Nursing Practice.References:
Beretta, S., Polastri, D., Clerici, C.A., Casanova, M., Cefalo, G., Ferrari A., Luksch, R., Massimino, M., Meazza, C., Podda, M.G., Spreafico, F., Terenziani, M. and Bellani, F.F. (2010) End of life in children with cancer: experience at the Pediatric Oncology Department of the Instituto Nazionale Tumori in Milan, Pediatric Blood and Cancer, 54, pp. 88-91.
Giorgi, A (2009) The Descriptive Phenomenological Method in Psychology, Duquesne University Press: Pittsburgh, PA.REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
16/EE/0050
Date of REC Opinion
3 Mar 2016
REC opinion
Further Information Favourable Opinion