End‐of‐life care in Italy: personal experience of family caregivers. A content analysis of open questions from the Italian Survey of the Dying of Cancer (ISDOC)

Objective: This study aims at describing the emotional and practical experience of a representative sample of Italian non-professional caregivers when caring for a terminally ill family member and is part of the ‘Italian Survey of the Dying of Cancer’, which involved 2000 adult cancer deaths representative of the whole country. Methods: Information on patients' experience was gathered from non-professional caregivers by an interview. A specific question was asked about the caregivers' emotional and practical experiences while assisting a terminally ill relative. A content analysis of the open question on caregivers' perceptions was performed on transcribed answers. Three researchers independently generated categories. Subsequently, areas where they differed were reconsidered and an interpretation was agreed upon. Results: Valid interviews were obtained from 1231 non-professional caregivers. Answers were classified according to the perception of the experience as positive (33.1%), negative (65.1%) or neutral (1.8%). Conclusion: Assisting a family member with cancer in his/her last three months of life is a very strong physical and mental stress for the caregiver. In some cases, this experience is nevertheless perceived as an evolution chance. Health-care providers should need to develop programs to ensure that family caregivers' needs for information and support are given great importance. Copyright © 2008 John Wiley & Sons, Ltd.