Psychosocial Needs of African American Parents of Children with Cancer
Parents of children with cancer who self-identify as racial and ethnic minorities suffer disproportionately from psychological distress but are less likely to receive targeted interventions. Furthermore, existing interventions to mitigate parental distress were not developed to be culturally responsive to the needs of African American (AA) parents. While standards of pediatric psychosocial cancer care call for culturally congruent and risk-adapted systematic assessments, AA’s perspectives regarding psychosocial needs are grossly underrepresented in the literature.
Due to their longitudinal presence, pediatric oncology nurses are well positioned to elicit family psychosocial needs and provide support; however, there may be high variability in nurses’ attitudes and practices. Thus, effective identification of AA parents’ psychosocial needs and pediatric oncology nurses’ psychosocial perspectives and practices will inform development or adaptation of culturally congruent nurse-led psychosocial interventions that will more effectively mitigate distress among AA parents.
The objective of the proposed dual center research is to inform future psychosocial interventions for AA parents through completion of two aims: (1a) elicit psychosocial needs of AA families through in-depth semi-structured interviews with AA parents; (1b) elicit perspectives of pediatric oncology nurses on their role as interventionists and psychosocial care provision to AA families; and (2) refine the existing Oncology Nursing Society Psychosocial Survey (ONSPS), which gauges pediatric oncology nurses’ readiness to act as psychosocial interventionists.
I am building a program of research to improve disparate psychosocial outcomes in families of seriously ill children, which intertwine with all other palliative care domains. In completing the proposed research and training plan, I will have foundational training and research to successfully compete for an NCI K01 award aimed at developing or adapting a nurse-led culturally congruent psychosocial intervention for historically marginalized AA parents of children with cancer.
Ijeoma Julie Eche, PhD, MPH, FNP-BC, AOCNP, CPHON, BMTCN is a nurse scientist in the Phyllis F. Cantor Center for Research in Nursing and Patient Care Services at Dana Farber Cancer Institute. She holds a bachelor’s degree in nursing from Regis College, a master’s degree in nursing with specialization in family nurse practitioner, and a doctoral degree with a focus on population health both from the University of Massachusetts Boston. Dr. Eche’s post-doctoral research fellowship was sponsored jointly by the Dana Farber Cancer Institute and the University of Massachusetts Boston. Dr. Eche’s research agenda is to reduce disparities in pediatric palliative care and enhance psychosocial outcomes through nurse-led interventions.