The genogram as a recruitment tool for identifying primary caregivers of youth living with sickle cell disease preparing for transition

Document Type

Journal Article

Publication Date



Journal of advanced nursing




adolescent; chronic disease; family; genograms; nursing; recruitment; research methods; sickle cell; transition; young adults


AIMS: The purpose of this secondary analysis was to describe the impact of using genograms to identify family caregivers from an original research study which used family caregiver-adolescents/young adults (AYA) dyads. BACKGROUND: Research to improve transition preparation for AYA with chronic disease is essential as 90% will survive into adulthood. Family-based transition research is specifically needed as a majority of transition preparation will occur in the home setting. Dyadic research on transition has not previously described strategies for recruiting appropriate family caregivers. DESIGN: A descriptive, secondary analysis was conducted using genograms developed during the original study conducted between October 2019 and February 2020. METHODS: For this secondary analysis conducted between July 2020 and August 2021, 50 genograms were analysed using descriptive statistics to describe family structures, relationships and responsibilities in families of AYAs living with sickle cell disease. RESULTS: In 43 genograms, there was only one primary caregiver in the family. In seven genograms, there were multiple primary caregivers who met the inclusion criteria for primary caregiver in a single family. In five genograms, there were two appropriate primary caregivers in a single family, and in two genograms, there were three appropriate individuals in a single family who met study criteria as a primary caregiver. CONCLUSIONS: Findings from the analysis of the genograms used in the original study demonstrated potential ability to improve on dyad recruitment by more specifically identifying the family member most involved in supporting the AYA's disease management. IMPACT: Genograms are an established tool for gathering information on families and application with recruitment could improve research in the realm of transition and other family-based research. NO PATIENT OR PUBLIC CONTRIBUTION: This was a secondary analysis that assessed already existing data.