Access and experiences of palliative care services. Version 1.
Research type
Research Study
Full title
An exploration of access, decision-making and experiences of palliative care services for families of children with non-malignant life-limiting conditions.
IRAS ID
154413
Contact name
Sharon/S McCloskey
Contact email
Sponsor organisation
Dublin City University
Duration of Study in the UK
0 years, 6 months, 5 days
Research summary
There is a lack of information on how health care professionals, parents and children access and experience palliative care services for children non-malignant life-limiting conditions. It is also recognised that palliative care for children is different from adult palliative care. Children have differing service requirements at different times during their illness. This research will investigate health care professionals, parents and children’s views of palliative care services for children with non-malignant life-limiting conditions in Ireland. These experiences will be investigated at different stages of the child’s illness.
A mixed-method design will be used.
The participants in the study will comprise of three groups.Group A: Health care professionals experienced in the care of children with non-malignant life-limiting conditions.
Group B: Parents of children with non-malignant life-limiting conditions.
Group C: Children with non-malignant life-limiting conditions aged between 7 years and eighteen years.The three groups will be identified by contacting a range of voluntary and statutory organisations. These will include the Children’s University Hospital Temple Street, Laura Lynn Ireland Children’s Hospice, Mid-Western Regional Hospital Complex, Jack and Jill Foundation and the Northern Ireland Children’s Hospice.
The Healthcare professionals, parents and children will be asked to participate in an interview. The interview with the Health care professionals and parents will not exceed 90 minutes and the interview with children will not exceed 30 minutes. The parents will also be asked to complete questionnaires.
The Health care professionals and parents will be asked questions regarding their experiences of palliative care services including issues regarding access and decision-making. The children will be asked about their experiences and decision-making.
The findings will be used to make recommendations for a model of service provision for children requiring palliative care.
The All Ireland Institute of Hospice and Palliative Care (AIIHPC) and the Health Research Board (HRB) are funding this study.
REC name
HSC REC A
REC reference
14/NI/1110
Date of REC Opinion
19 Jan 2015
REC opinion
Further Information Favourable Opinion