Biography Writing in the Pediatric Palliative Care Context: Review and Feasibility Data

Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of applying a biography program to a pediatric palliative care context is less well known.

A narrative review of the literature was conducted, drawing on existing adult biography programs, while noting differences between the pediatric and adult contexts. The Story Project is outlined in this manuscript as an example of a pediatric biography writing approach, with pilot survey data from six volunteer biographers presented. Thematic analysis was conducted on qualitative data elicited from volunteer biographers regarding challenges experienced and the perceived benefits of the program. Descriptive information is provided for other aspects of their experience of the Story Project.

The challenges identified by the volunteer biographers were grouped into seven themes, namely, (1) delays encountered, (2) rapport/interactions with family, (3) family distress, (4) logistics, (5) transcribing-specific issues, (6) identifying themes, and (7) finalizing the biography. The perceived benefits of the Story Project, as perceived by the volunteer biographers, were grouped into four main themes: (1) beneficial processes for families, (2) benefits for the volunteers, (3) intrinsic value of the final product, and (4) beneficial uses of the product. Biographies took between 3-20 months to complete, with most taking 12 months or less.

Biography writing is a potentially valuable approach for use with pediatric palliative care patients and their families, with the Story Project being one example of such an intervention, with promising early feasibility data.