The experience of palliative patients and their families of a family meeting utilised as an instrument for spiritual and psychosocial care: A qualitative study

摘要

Background This study explores the experience of palliative patients and their family members of a family meeting model, utilised as an instrument for the provision of spiritual and psychosocial care. In doing so the study embraces a broad understanding of spirituality which may or may not include formal religious practice and a concept of psychosocial care that includes: social and emotional well-being, communication, self esteem, mental health and adaptation to illness. The meeting of spiritual and psychosocial needs is considered to be an important aspect of palliative care. Methods This qualitative study, philosophically underpinned by hermeneutic phenomenology, investigates the participatory experience of palliative care patients and their significant family members of such a family meeting. People registered with two large metropolitan palliative care services, who met selection criteria, were referred by medical staff. Twelve of the 66 referred took part in family meetings which also included significant others invited by the patient. A total of 36 family members participated. The number of participants of individual family meetings ranged from two to eleven. After the family meeting every participant was invited to take part in an individual in-depth interview about their experience of the meeting. Forty seven interviews were conducted. These were audio recorded and transcribed. Results Data analysis, utilising Ricoeur's theory of interpretation, revealed seven main themes: personal experience of the meeting, personal outcomes, observation of others' experience, observation of experience and outcomes for the family unit, meeting facilitation, how it could have been different and general applicability of the family meeting. Throughout these themes were numerous references to aspects of the web of relationships which describe the concept of spirituality as it is defined for the purpose of this study. Conclusions The findings indicate the potential of the type of family meeting reported for use in the spiritual and psychosocial care of people receiving palliative care and their families. However further research is needed to explore its application to more culturally diverse groups and its longer term impact on family members.