Emotional distress in families accessing palliative care
Research type
Research Study
Full title
The experience of emotional distress and help-seeking for distress in families accessing palliative care
IRAS ID
124297
Contact name
Clare Carolan
Contact email
Sponsor organisation
University of Stirling
Research summary
We recognise that the impact of life threatening illnesses such as cancer extend beyond the patient and can have a ripple effect on the health and well being of family members. We know that a significant number of palliative care patients and their family members experience psychological or emotional distress which can go unrecognised by the health or social care professionals looking after them.
While some research has shown that screening for distress may help to improve the detection of distress, a significant proportion of those who are found to be distressed do not want formal help for distress. We do not fully understand the reasons for this. Much of the research looking at distress in cancer and palliative care has either looked at the patient or the family member/caregiver in isolation and while some studies have begun to look at the experiences of couples, we know very little about the experience of the family as a whole.
We want to know more about the experience of emotional distress in families accessing palliative care and about how and why they seek help for distress and what influences these decisions. We would like to understand more about how families share and tell one another about their distress. We want to do this by asking families to tell us about their experience rather than one individual family member. We also want to ask a health professional who is known to the family about their perceptions of the family’s distress. If we can understand more about how distress affects the wider family and what help families need and want for their distress then this may inform how health and social care professionals can improve the care they provide for future palliative care families.
REC name
North of Scotland Research Ethics Committee 2
REC reference
13/NS/0035
Date of REC Opinion
4 Jun 2013
REC opinion
Further Information Favourable Opinion