Purpose: The number of people living with and beyond cancer is increasing; a significant number of these people will experience the long-term and late effects of cancer and its treatment. Research into this group has been identified as a priority to better understand healthcare needs. This review identified and synthesised qualitative research data relating to the lived experience of the consequences of cancer and its treatment.
Methods: A systematic search via electronic databases was conducted in July 2019. Literature was identified that explored the experience of adults living beyond cancer from their own perspective. Thematic synthesis was used to extract and analyse data.
Results: Six articles were reviewed. Three main themes were identified with four subthemes:1. Living with an altered sense of self; 2. Things are never going to be quite the same again (2.1. The unexpected. 2.2 The uncertain.); 3. Ways of coping with the unexpected and the uncertain. (3.1. Drawing on internal resilience. 3.2. The influence and impact of external relationships.). The findings showed that the participants' world-view changed after cancer and this affected everyday lives both positively and negatively.
Conclusions: The experience of having had cancer remains significant long after diagnosis and treatment, yet effective preparation and ongoing support for living beyond cancer is lacking. The experience of living long-term after cancer is characterised by an altered sense of self and has implications for long-term wellbeing. Further research should explore healthcare needs and services required to adequately meet the needs of this growing group of people.
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