Developing a conceptual model of teenage and young adult experiences of cancer through meta-synthesis

Abstract

Objectives: To systematically identify and analyse published research exploring teenage and young adult experience of cancer to inform the development of a patient-reported outcome survey intended to explore if a correlation exists between specialist cancer care and quality of life for young people with cancer.

Design: Systematic review and meta-synthesis.

Data sources: Medline, CINAHL Plus and PsycInfo were searched for literature published between 1987 and 2011.

Review methods: Search terms included those for: population (e.g. teen, young adult); intervention (e.g. cancer); outcome (e.g. experience); and study type (e.g. qualitative).

Inclusion criteria: adolescents and young adults were both represented; diagnosis of cancer; published in English; and used qualitative methods to report an aspect of the cancer experience. Studies were excluded if they were reporting: palliative care experience; secondary data; or proxy views, i.e. parent or health professional perspective. Methodological quality was assessed using Cesario criteria and meta-synthesis involved deconstruction and decontextualising findings to identify common themes.

Results: Three hundred and fifteen studies were identified, 17 fulfilled the inclusion criteria. Of these, most (59%), were assessed as being high quality, none were rated poor. Nine common themes were identified: psychosocial function, importance of peers, experience of healthcare, importance of support, impact of symptoms, striving for normality, impact of diagnosis, positive experiences, and financial consequences.

Conclusions: The conceptual model developed from the meta-synthesis depicts the mediators and consequences of cancer care that impact on young people's quality of life after a cancer diagnosis. The model highlights areas that require further exploration.