We welcome Dizer et al.’s (2010) commentary on our study because it draws further attention to the growing need to understand the factors that influence and motivate individuals to engage in self-care. Although engagement in self-care is undoubtedly influenced by cultural and societal aspects, the provision of health services and the training, education and expectations of health professionals, it is reassuring to note that researchers from across the globe are grappling with similar issues around supporting and promoting engagement in self-care. Uniquely, it seems that these issues are not bound by culture, geography or distance, which serves to highlight the international relevance of the work on self-care that we are all pursuing.
Dizer et al. (2010) suggest that patients experiencing severe or more frequent side effects or complications may be expected to lessen their participation in self-care as a result of perceptions of reduced control. It is reasonable to hypothesise that the severity or frequency of treatment-related side effects may influence individuals’ perceptions of control and subsequently their motivation or abilities to engage in self-care. Our study did not set out to measure the severity or frequency of treatment-related side effects – hence – our findings simply reflect what participants reported about their side effect experiences and participation in self-care within the context of their perceptions of control. Nonetheless, as reported in our original paper (Kidd et al. 2009), ‘high’ controllers (who subsequently spoke of exercising more personal judgement over, and actively engaging in, their self-care) perceived the impact of treatment and the severity of side effects to have been less onerous than they had expected at the outset of treatment. They spoke of the mismatch between their initial expectations of the treatment brought about by the ‘horror’ stories from friends and family, fellow patients or the media and the reality of their treatment. They saw the side effects as either a minimal or a small price to pay for a chance of survival and improved quality of life, and perceived themselves as lucky to be undergoing treatment and to have had their cancer ‘caught early’. The ‘low’ controllers, on the other hand, appeared to concentrate to a larger extent on the variable nature, and increased severity, of their side effects. Furthermore, they appeared to hold more fatalistic perceptions towards being diagnosed with cancer and spoke of less ‘fighting spirit’ than the ‘high’ controllers. Perhaps, as a consequence, they were less inclined to exercise personal judgement over, and actively engage in, their self-care.
In answer to Dizer et al.’s (2010) question, it might be that the ‘high’ controllers appeared to engage more easily and readily in their self-care as a result of facing less intense side effects compared to the ‘low’ controllers. It would be premature, however, to conclude this from our study given its aim and design but more so given that the findings revealed several plausible explanations for their individual perceptions of control and their subsequent engagement in self-care, not just related to their side effect experiences per se. Although Dizer et al. (2010) suggest that patients experiencing severe or more frequent side effects and complications may be expected to lessen their participation in self-care, we would argue that the reverse may also be the case for some people and that the experience of severe or frequent side effects may lead an individual to be more motivated to participate in their self-care to relieve such effects and lessen the impact on their daily lives. Such questions remain unexplored and are undoubtedly worthy of further exploration.
We simply do not have sufficient evidence about the factors that enhance, or reduce, peoples’ perceptions of control and the impact that this has on their subsequent participation in self-care, particularly amongst people receiving treatment for cancer. Existing evidence suggests that experiences of side effects may indeed play a role in influencing individuals’ perceptions of control and subsequent engagement in self-care (Bayliss et al. 2003, Pan et al. 2011). Equally, there is evidence to suggest that perceptions of control are not necessarily linked to improvements in disease severity or symptom control. Instead, they may be attributed to the ways people adapt to, or overcome, the physical and emotional impact of their illness and symptom experiences and the unpredictability in the perceived effectiveness and appropriateness of their chosen self-management strategies (Fraser et al. 2006, Cooper et al. 2010). Indeed, our findings also reflect such explanations.
We wholeheartedly agree with Dizer et al. (2010) about the need to explore how factors such as past experiences, disease stage, quality of life and personality influence perceived control and subsequent engagement in self-care. Our findings provide limited understanding of the influence of disease stage and quality of life because the patients were all of a similar disease stage, at a similar point in their treatment journey, and perceived themselves to be reasonably fit and well and have a good quality of life. An interesting issue that we also grapple with, however, is whether greater perceptions of control lead to greater engagement in self-care or whether greater engagement in self-care leads to greater perceptions of control. A greater focus on this issue would be valuable. We would welcome further reflection and debate on what self-care actually means to people, the roles that they assume in engaging in self-care and how and why they take responsibility for, and control over, their self-care. As Dizer et al. (2010) question, is self-care about participating in decision making or performing procedures to manage treatment-related side effects and complications, or both? We would also ask, is self-care about following prescribed regimens and advice from health professionals or about making a personal judgement about issues related to, and priorities for, self-care even if these appear to go against the advice of medics or health professionals?
It is clear that there is still a great deal that we do not know about how and why people engage in self-care and what it means to them, particularly amongst people with cancer. Self-care features as a prominent strategy of health policies across the world and interest in it as a concept and its’ outcomes is rapidly gaining momentum. To support and sustain engagement in self-care and to ensure that people are receiving self-care support tailored to their individual needs, experiences and perceptions, and priorities, we need to start by understanding how individuals’ perceptions and experiences shape, influence and motivate their participation and engagement in self-care.