Self-management, self-management support needs and interventions in advanced cancer: a scoping review

Abstract

Patients with advanced cancer can experience illness trajectories similar to other progressive chronic disease conditions where undertaking self-management (SM) and provision of self-management support (SMS) becomes important. The main objectives of this study were to map the literature of SM strategies and SMS needs of patients with advanced cancer and to describe SMS interventions tested in this patient population. A scoping review of all literature published between 2002 and 2016 was conducted. A total of 11 094 articles were generated for screening from MEDLINE, Embase, PsychINFO, CINAHL and Cochrane Library databases. A final 55 articles were extracted for inclusion in the review. Included studies identified a wide variety of SM behaviours used by patients with advanced cancer including controlling and coping with the physical components of the disease and facilitating emotional and psychosocial adjustments to a life-limiting illness. Studies also described a wide range of SMS needs, SMS interventions and their effectiveness in this patient population. Findings suggest that SMS interventions addressing SMS needs should be based on a sound understanding of the core skills required for effective SM and theoretical and conceptual frameworks. Future research should examine how a patient-oriented SMS approach can be incorporated into existing models of care delivery and the effects of SMS on quality of life and health system utilisation in this population.

The ENABLE study protocol: Understanding and characterising the value and role of self‐management support for people living with cancer that is treatable but not curable

“…This poses a unique challenge and needs to be balanced with the fact people often wish to maintain independence, normality and control over their lives (Calman et al, 2010;Harley et al, 2012;Johnston et al, 2012;Roberts et al, 2013). More research, in particular longitudinal research, is needed to understand how people living with treatable but incurable cancer manage the impact of cancer and its treatment (Budhwani et al, 2019;McConnell et al, 2017;McCorkle et al, 2011;Rainbird et al, 2009;Reed & Corner, 2015;Wang et al, 2018) to strengthen the evidence base for interventions (Fenlon et al, 2009;King et al, 2014). To address this gap, a longitudinal design will be employed, an approach not previously adopted to examine SMS among this particular patient group, enabling the generation of insights into how perspectives, strategies and needs of patients and carers change over time in relation to self-management and the unpredictable nature of the disease.…”

“…Self‐management has been defined as managing consequences of cancer and its treatment, seeking support, recognising and reporting disease progression; and lifestyle changes to promote well‐being and survival (Foster, ). Some evidence indicates that SMS could address the needs of those who are living with cancer that cannot be cured (Budhwani, Wodchis, Zimmermann, Moineddin, & Howell, ; Harley et al, ; McConnell et al, ; McCorkle et al, ; Rainbird et al, ; Reed & Corner, ). A recent scoping review of studies on self‐management strategies and SMS needs of patients with advanced cancer found that patients engaged in a variety of self‐management behaviours and have an extensive need for SMS (Budhwani et al, ).…”

“…Patient needs for SMS fell broadly within the domains of managing complex, cyclical and chronic symptoms and the impact of those symptoms on the psychosocial aspects of daily life, findings supported by two systematic reviews of the unmet needs of people living with advanced cancer (Moghaddam, Coxon, Nabarro, Hardy, & Cox, ; Wang et al, ). The importance of the role of carers in addressing the self‐management needs of patients with advanced cancer has also been highlighted (Budhwani et al, ), with managing patients' emotions identified as a particularly challenging part of caregiving (Wang et al, ).…”

“…Some evidence indicates that SMS could address the needs of those who are living with cancer that cannot be cured (Budhwani, Wodchis, Zimmermann, Moineddin, & Howell, 2019;Harley et al, 2012;McConnell et al, 2015;McCorkle et al, 2011;Rainbird et al, 2009;Reed & Corner, 2015). A recent scoping review of studies on self-management strategies and SMS needs of patients with advanced cancer found that patients engaged in a variety of self-management behaviours and have an extensive need for SMS (Budhwani et al, 2019). Patient needs for SMS fell broadly within the domains of managing complex, cyclical and chronic symptoms and the impact of those symptoms on the psychosocial aspects of daily life, findings supported by two systematic reviews of the unmet needs of people living with advanced cancer (Moghaddam, Coxon, Nabarro, Hardy, & Cox, 2016;Wang et al, 2018).…”

“…Although a small number of longitudinal qualitative studies have been carried out on the experiences of people living with advanced cancer (Grant et al, 2004;Murray et al, 2002;Roberts et al, 2013;Walshe et al, 2017), there is a significant gap in longitudinal studies examining the self-management behaviour and SMS needs of those living with advanced cancer, and their unmet needs more generally (Budhwani et al, 2019;Wang et al, 2018). In this paper, we describe the protocol for the ENABLE study, a longitudinal qualitative study examining SMS specifically in people living with cancer that is treatable but not curable, to understand how needs and perspectives change over time in relation to unpredictable disease trajectories.…”