Children's Hospice Provision, East Midlands, Vs.1
Research type
Research Study
Full title
A mixed methods study to explore which hospice and palliative care services would make the most difference to the greatest number of children and families within the East Midlands.
IRAS ID
147098
Contact name
Helena Dunbar
Contact email
Sponsor organisation
De Montfort University
Research summary
Children requiring palliative and hospice care suffer from life-limiting and life-threatening conditions. Life-limiting are conditions where cure is possible but can fail e.g., cancer, and life-threatening are those conditions which may lead to severe disability and premature death e.g, cystic fibrosis.
Many of these children are now living longer and may require the support of palliative care teams over decades and even into adulthood. In 2011, 2013 figures were published that showed there are approximately 52,000 children and young people, (0-25 years), with life-limiting/life-threatening conditions living in England who may require palliative care services. It is estimated that approximately 3000 of them are living in the East Midlands.
Rainbows is the only children's hospice in the East Midlands but is currently only accessed by approximately 10-15% of the children and young people within the region who have life-limiting/life-threatening condition. This study will explore, from the perspective of parents of children with life-limiting/life-threatening conditions, their experiences, use and acceptability of children’s hospice and palliative care services in the region.
This is a mixed methods study occurring over three phases.
In Phase 1 parents of children who use services at Rainbows will be invited to participate in one of six focus groups.In Phase 2 twenty parents, who don't currently access services at Rainbows but whose child is known to children's community/palliative care teams, will be invited to participate in one-to-one interviews.
Data collected during phase 1 and 2 will be analysed to identify themes which will be used in the development of a questionnaire posted in Phase 3 to parents of all children on the caseloads of the same community/palliative care teams.
An understanding of the types and characteristics of services that parents want and value will be considered in the planning and development of future services across the East Midlands.
REC name
East Midlands - Derby Research Ethics Committee
REC reference
14/EM/1004
Date of REC Opinion
18 Jun 2014
REC opinion
Further Information Favourable Opinion