A narrative study of maternal grief in pediatric cancer
Shannon Johnson
UCCS School of Public Affair, USA
: J Nurs Patient Care
Abstract
Background: The mothers of children with cancer experience a grief process that is commonly overshadowed by the experiences and needs of their children. Meanwhile, though overlooked, maternal grief due to cancer is complex and difficult to navigate. Not only are there layers of anticipatory grief and anxiety about the future at play,1 but maternal grief due to childhood cancer is also a form of disenfranchised.2 Society tends to recognize grief after death and not before, rendering grief due to childhood cancer an isolating experience. Finally, maternal grief due to childhood cancer involves ambiguous loss3, as the opportunity for a normal childhood and family life is lost, the normal state of a mother’s relationships with her other children and loved ones altered, and the mother’s planned trajectory for her own life disrupted. These many complexities are often navigated in the face of the overwhelming care responsibilities that disproportionately face mothers4 throughout the childhood cancer treatment process. Conceptual Foundations: The researchers used a narrative approach5 to explore experiences of grief among a sample of mothers of a child who was diagnosed with cancer between six months and three years ago, and who was still living and in their care. The study was guided by matricentric feminism, a mother-focused feminist perspective that seeks movement toward “empowered mothering”, characterized by mothers’ ability to shape their own maternal identities.6 Matricentric feminism was complemented by feminist theory, which recognizes a struggle for autonomy as an important force in motherhood that is driven by the traditional split between public and family life, where a disproportionate impact of family and parenting responsibilities on women can diminish their control over their own choices and identity.4 Methods: A narrative approach5 was used to explore grief among mothers of a child with cancer (N=7). All participants completed an initial interview focusing on their personal narratives of grief. Three months later, five of the original seven participants completed a memory box elicitation interview focused on their reactions to a memory box they had created between their two interviews. Participants also provided access to their social media feeds (e.g., Facebook, Instagram) and submitted two journal entries, written between their interviews and containing reflections on their experiences of grief across the course of childhood cancer. Thematic analysis7 was used to code interview transcripts, with a focus on the narrative aspects of the data. The triangulation of narrative data sources (interviews, journals, social media feeds) and prolonged engagement with participants bolstered the rigor and trustworthiness of the study.8 Findings: Preliminary themes from interview 1 include: 1. Grief over with my child has lost; 2. Grief over my own losses; 3. Unable to process and grieve; 4. Sense of isolation; 5. Feeling emotionally unsupported; and 6. Silver linings. Emerging themes point to a need for heightened attention to the psychosocial needs and experiences of mother in pediatric cancer settings. Findings will be filled out with analysis of participants’ memory box elicitation interviews and their social media feeds. Implications: Findings reflect the meta-story of maternal grief among the current sample and can be used to deepen insight into the needs and experiences of mothers and their families. Findings can also be used to inform the development of psychosocial interventions, for use in pediatric cancer settings. Indeed, tending to the holistic needs of mothers benefits not just those mothers themselves, but rather all members of the family unit via a strengthening of the family system. References 1. Alâ?Gamal, E., & Long, T. (2010). Anticipatory grieving among parents living with a child with cancer. Journal of Advanced Nursing, 66(9), 1980-1990. 2. Doka, K. J. (1999). Disenfranchised grief. Bereavement care, 18(3), 37-39. 3. Knight, C., & Gitterman, A. (2019). Ambiguous Loss and Its Disenfranchisement: The Need for Social Work Intervention. Families in Society, 100(2), 164-173.
Biography
