eHealth, agency, and vulnerability in cancer: A reflection

ISCHPblog

Written by Esther de Jongh

Photo by Steven Lelham on Unsplash

Within the cancer survivorship domain, the use of exercise to reduce negative side effects of treatment is gradually becoming standard practice, resulting in a higher quality of life for many.1-4 Accelerated by the pandemic in 2019, the use of eHealth programs for supervised exercise (also known as telerehabilitation programs), whether experimental or standardized, has increased. eHealth programs have the potential to bypass obstacles that might prevent patients from exercising at a physical location, such as long distances and lack of time or (financial) resources.5-7 Reducing the equity gap in health care is one of the promises its online delivery hopes to fulfill: provision of exercise with online guidance can lower the threshold for those who lack know-how or resources to do so on their own accord, while staying in the familiarity of their own home. In this post I highlight the important role of the healthcare provider (HCP) in making these programs accessible to everyone. 

My research focuses on the social and motivational aspects of willingness to participate in exercise programs for cancer survivors in multiple countries. As I approach the halfway mark of my PhD, I reflect on how eHealth initiatives might interact with prevalent motivational attitudes. The essay by Adams and his colleagues (2019), about the effects of neoliberalist thinking on modern psychological discourse, comes to mind as I do so.8 

The term neoliberalism is recognized as a political and economic movement or ideology that has grown to dominate all aspects of Western society since it was first introduced in the late 1970s. Socially, the idea that society is made up of individuals that are ‘related to one another as competitors who pursue their own self-interest,’ is both a premise and an iteration of neoliberalism.8 As a result, striving for happiness, fulfilling goals, and optimizing health are dominant themes in Western psychological discourse today – overshadowing the pursuit of a collective positive affect or the value of interdependent relations.8-10 This mindset can implicitly or explicitly ascribe outcomes to individual responsibility, as opposed to environmental or contextual factors.8,10-11 

The (heavily debated) idea of ‘meritocracy’ is another example of how this mindset is enforced. Meritocratic systems build on the belief that the extent of an individual’s success is based on the height of their qualifications and actions – and the idea that those who come out on top are deserving of their positive outcomes.12,13 Ignatow & Gutin (2024) describe how individuals might internalize these feelings of deservingness in relation to their health outcomes as well.14 This is another mechanism that promotes dismissal of the external or contextual factors that transcend an individual’s sphere of influence.8,12  

The ability to maintain a healthy diet and pursue an active lifestyle can only in part be ascribed to individual responsibility: making health-conscious decisions depends on the presence of knowledge, access to resources, and a supportive environment.15-17 From this point of view, every patient begins their treatment trajectory from a different starting point, and these differences are carried forward as a patient undergoes treatment and begins recovery and rehabilitation.18-20 

Problematically, societies that are considered to have relatively equal access to health resources, have the strongest conviction that success and failure in the health domain can be ascribed to an individual’s own doing.12,21 

An increased use of concepts like agency and self-efficacy within the psycho-oncological field points to the assumption that patients can play an active role in the management of their health and well-being throughout their trajectory. 22-25 Studies exploring exercise motivation in cancer patients are no exception, as they use these terms to assess the ability and confidence to engage in exercise and achieve its desired outcomes.23-25 Although these are justifiably desirable traits, favorable environmental factors are needed to make the right ‘health related decisions’ long before a sense of agency is. The relative scarcity of resources of those with a lower socioeconomic position has shown to shape an individual’s thinking and negatively affect confidence, agency, and self-efficacy. 21,26–31 These traits, in turn, affect a patients’ readiness to engage in exercise.23-25 

I consider how neoliberalist influences on psychology – and accompanying assumptions of individual responsibility – might interact with the circumstances of eHealth programs. As the platforms eHealth programs use are ‘entered’ independently from the home, could readiness to participate in them require a higher sense of individual responsibility compared to in-person exercise settings? Is the threshold to use them higher for those with a lower sense of agency or self-efficacy? 

The accessibility and autonomy eHealth programs offer are among their biggest strengths, yet their availability does depend on those who are able to introduce them. Although all HCP’s – and healthcare systems in general – inherently strive for objectivity and the prioritization of vulnerable patients, implicit assumptions or the prioritisation of patients’ more immediate needs have been observed to interfere with equity in provision of supportive care.32-35  

It is important that HCPs explicitly invite those who might not experience the same levels of agency and confidence to participate in such programs, through assuring them of their abilities and the potential of online accessibility. If this dynamic is overlooked, eHealth programs risk being added to the list of supportive care initiatives that are not equally accessible to cancer patients.36,37 If they are explicitly introduced to all patients however, eHealth programs can make a huge positive impact on the recovery of many. The accessibility of eHealth programs depends on the HCP’s consideration of the circumstances that contribute to a higher sense of agency and confidence in a patient to exercise from home.26,27,29,31 If this is the case, eHealth programs are able to contribute to the broader aim of health equity for patients with cancer.

Author’s note: I acknowledge that the functional delivery of healthcare depends on a wide range of social, cultural, and economic factors that are unique to different parts of the world. This commentary is limited to digitalized societies and assumes access to primary healthcare. I am aware that many societies are underdeveloped in this field, and underline the importance of supporting the sustainable development goals instated by the United Nations to this end.  

About the Author

Esther de Jongh is a PhD candidate at the Netherlands Cancer Institute (NKI). She completed her MSc in Social & Cultural Psychology at the London School of Economics in 2021. In her research, she focuses on social and motivational aspects of participation in digital health initiatives within the cancer survivorship domain. Her broader research interests include how contextual and cultural factors shape the way individuals think, act, and respond to different situations. This blog post was written in personal capacity and is not intended to reflect the position of the Netherlands Cancer Institute. 

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