Study title

Abstract copyright UK Data Service and data collection copyright owner.

This is a qualitative data collection. These data were collected as part of a PhD project which explored the experiences of individuals living in a family where a member was dying or had a life-threatening illness. This was an ethnographic study which combined informal, in-depth interviews with nine families and participant observation on a hospice ward. Participant observations and the interviews from one family have not been archived due to consent restrictions; therefore the collection comprises data from eight families. Broadly the research aims were:

• to explore how everyday family life is pursued when someone in the family has a life-threatening or terminal illness
• to ask what families are doing at this time
• to examine how relationships, family practices, familial identities and everyday family lives are experienced - particularly how they are sustained and/or changed when families encounter illness, dying and death
• to also consider how family lives are experienced in a less every day and familiar context, by asking what might be significant about a hospice inpatient ward as a setting for family life during the illness process and especially nearing the end-of-life

These data are under embargo until October 31st 2014 at the request of the depositor. After that, the data will be available only with the express permission of the depositor.


Main Topics:

The data collection deposited includes 37 in-depth interviews with members from eight different families. The consistent themes covered in the interviews include:

• facing death
• living with life-threatening illness
• everyday routines
• family life and relationships