Narratives of the heart: telling the story of children with a cardiac condition through a bead program.

AIMS

To present and discuss the significance of a bead program in assisting families to put together the story of a child's journey through cardiac intervention. The main focus of the article is the importance to families of developing a narrative in making sense of the experience of discovering their child has a cardiac condition and how this is enhanced by the bead program.

BACKGROUND

The Heart Beads Program involved giving families beads related to procedures and processes the children undergo while they are in hospital. Research on narratives related to illness suggests that forming a narrative that incorporates the health condition facilitates the ability to talk about these experiences and helps to make sense of and deal with the stressors related to such traumatic life events.

DESIGN

A qualitative methodology was used to evaluate the program employing semi-structured interviews and content analysis following a grounded theory approach.

METHODS

Interviews were undertaken with 11 families to highlight their experiences of being involved in the Heart Beads Program. Themes were identified from the interviews and critical discussion was used to structure and connect the themes.

RESULTS

The major theme that emerged from the analysis of the interviews was the importance of the beads in enabling the telling of the child's story. Five subthemes were identified in this theme: symbolism, encouraging/uplifting, acknowledgement, connection with others and imagining the future. The themes are outlined and expressed through specific comments from interviews.

CONCLUSIONS

The Heart Beads are seen as presenting a significant way for children and families to comprehend their time in hospital as part of the child's life story.

RELEVANCE TO CLINICAL PRACTICE

The program can offer the opportunity for health care professionals to relate to the child and family's story and to engage with that story in a person centred way.