Experiences of living with cancer of adolescents and young adults and their families: A narrative review and synthesis

Abstract

Introduction: Adolescence is a critical life stage marked by significant physical, psychological, and social change. Cancer diagnosis during adolescence profoundly affects this experience for adolescents and young adults (AYA) and their families with an impact that continues throughout life. It is important to understand these experiences to ensure delivery of appropriate and high-quality supportive care. This narrative review critically appraised and synthesised qualitative literature that explored the experiences of AYAs and their families living with cancer.

Method: Narrative review and synthesis of qualitative research of AYAs' and their families' experiences of cancer. MEDLINE, CINAHL and PsycINFO were searched between February 2000 and September 2019 using search terms including "adolescent", "young people", "young adult", "cancer", "family", and "qualitative". Literature was appraised and synthesised using Popay et al.'s¹ framework.

Results: 3016 articles were retrieved (Medline n=1298, CINAHL n=1632, PsycINFO n=86). Of these, 151 duplicates were removed. 2865 papers were screened with 121 abstracts considered for eligibility for inclusion. Eighteen papers met the inclusion criteria. Three inter-related themes were identified: being diagnosed with cancer; uncertainty - holding on to life and gaps in care delivery.

Discussion and recommendations: Few studies discuss the impact of cancer on the families of AYA living with cancer. Future research should explore this experience. By doing so the relational impact of cancer will be better understood as the basis of supportive family-centred care. PROSPERO Registration: CRD42017084148.

Keywords: Adolescent; Adolescente; Adulto joven; Cancer; Cualitativo; Cáncer; Familiar; Family; Qualitative; Young adult.