Balancing grief and survival: Experiences of children with brain tumors and their parents

ABSTRACT

Psychosocial research about childhood brain tumors is limited because of varied abilities and prognoses, with children's voices largely absent. Research has focused on the impacts on families and their reactions; this qualitative study used constructivist grounded theory methods to explore experiences of childhood brain tumors from the perspectives of 12 children and 12 parents using semistructured interviews. Their stories illustrated efforts to maintain positivity and normalcy as they faced grief and uncertainty. The substantive grounded theory of balancing grief and survival offers a lens through which to view children's and parents' complex experiences, struggles, and coping strategies as integrated, dynamic processes.

KEYWORDS:

• brain tumor
• child
• parent
• family
• communication
• grief

Acknowledgments

The authors wish to thank the participating families for sharing their experiences. Portions of this study were presented in the form of a workshop at the International Congress on Palliative Care, Montreal, Quebec, on September 11, 2014.

Funding

The authors wish to thank BrainChild for funding this study.

Appendix