Difficulties for a practitioner preparing a family for the death of a parent: a narrative inquiry

Abstract

A practitioner inquiry within an NHS specialist palliative care context used narrative methods to explore difficulties faced by practitioners when assisting a family in the process of preparing a child for the death of a parent. In this account, the practitioners failed to facilitate advanced family preparation despite several attempts. Methods to address and overcome inherent ethical difficulties and reveal relational practice were developed. Data included naturally occurring conversations between practitioners relating to one family, systematically exploring difficulties faced and meaning constructed in depth. The data were then used to fictionalise a family account that re-presented actual challenges practitioners confronted. Reflexivity was used to unfold the layers of complex influences and ethical issues practitioners face when grappling with making meaning. Even with a clear understanding of processes and willingness to facilitate difficult conversations, practitioners face tensions between respect for a dying patient’s needs, avoiding undermining the family culture and meeting children’s needs. Contrary to the requirement to practise from an evidence base, some situations require the ability to work with ‘not knowing’. Limitations include the subjective nature of the account and the smoothing over of complexity pertaining to lived experience.

Keywords:

• Specialist palliative care
• parental terminal illness
• children and young people

Acknowledgements

Many thanks to all my colleagues for their interest and support.

Notes

1. All the key members of staff working with this family had volunteered to be recorded as research participants but not all members of the wider multidisciplinary team or visitors to the meeting (such as students) had done so. This did not impact on the study as notes were taken.

2. Difficulties people have with experiencing, identifying and describing emotional responses.

3. Always talking.