Conceptual framework for living with and beyond cancer: A systematic review and narrative synthesis

Abstract

Objective The concept of living with and beyond cancer is now emerging in policy and literature. Rather than viewing this notion simply as a linear timeline, developing an agreed understanding of the lived experience of people affected by cancer will aid the development of person‐centred models of care. Methods A systematic review was conducted. The review question was “What does the term ‘living with and beyond cancer’ mean to people affected by cancer?” The protocol for the review was preregistered in the PROSPERO database (PROSPERO CRD42017059860). All included studies were qualitative, so narrative synthesis was used to integrate descriptions and definitions of living with and beyond cancer into an empirically based conceptual framework. Results Out of 2345 papers that were identified and 180 that were reviewed, a total of 73 papers were included. The synthesis yielded three interlinked themes: Adversity (realising cancer), Restoration (readjusting life with cancer), and Compatibility (reconciling cancer), resulting in the ARC framework. Conclusions Three themes describe the experience of living with and beyond cancer: adversity, restoration, and compatibility. The ARC framework provides an empirically informed grounding for future research and practice in supportive cancer care for this population.

Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support

“…This necessitates a thorough psychosocial assessment at the outset and through major transition points in the cancer trajectory, to ensure comprehensive understanding of young people's resilience, risk factors, needs and associated changes over time. 2,3,9,14,16,26,27 It also involves offering services when young people and families are ready and offering services repeatedly, to ensure that as needs and coping change over time, changing needs are also met. Together this highlights the importance of working with young people where they are at in the present moment, both physically and mentally.…”

“…Some also discussed an absence of social supports, including access to education support, lack of integrated care with schools, a lack of support with work, finances, and relationships. A lack of age-appropriate distraction in the hospital setting was also identified (quotes [26][27][28][29][30]. A lack of available peer support and connection with others experiencing cancer was also commonly reported (quotes 31-33).…”

Occupational therapy intervention for cancer patients following hospital discharge: How and when should we intervene? A systematic review

“…In Australia, with a population of 25.5 million people, there are over one million people who are either living with or beyond cancer (Australian Institute of Health and Welfare, 2020). The term “beyond cancer” is emerging in policy and literature (Le Boutillier et al, 2019) and is a term representing more than just people in remission from their cancer. As Le Boutillier et al (2019) describe, the term represents those who have realised their diagnosis, reconciled their diagnosis and readjusted their life in context of their diagnoses.…”

“…The term “beyond cancer” is emerging in policy and literature (Le Boutillier et al, 2019) and is a term representing more than just people in remission from their cancer. As Le Boutillier et al (2019) describe, the term represents those who have realised their diagnosis, reconciled their diagnosis and readjusted their life in context of their diagnoses. This captures people who remain on long‐term treatment, people who are not having any more treatment but remain well, people who are in remission and do not expect to have further treatment and those who continue to live their life despite their diagnosis.…”

Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany

“…The findings enhance the observation that “muddling through” is a non‐linear and individual process (Le Boutillier et al . 2019) of dealing with a chaotic and liminal state, which goes beyond binary concepts of before and after the illness. The results of this study may represent an expansion of our understanding of prostate cancer not as a chronic illness with disruptions and flows, but in particular as part of a normal ageing experience that is characterised by muddling through, fiddling with, and sometimes bumbling around the experienced changes to bodily functions.…”