What Are the Experiences of Men Affected by Prostate Cancer Participating in an Ecological Momentary Assessment Study?

Abstract

Background Within the cluster of self-report methodologies, ecological momentary assessment (EMA) is a method used in health services research whereby a participant repeatedly reports on affect, behaviors, symptoms, and cognitions as they occur in real time in the participant’s natural environment. However, little is known about the impact of participating in an EMA study on individuals’ experiences who are affected by prostate cancer. Objectives The aims of this study were to explore the lived experiences of men affected by prostate participating in an EMA study and assess whether their participation in EMA alters their representation of their condition. Methods Participants (n = 12) were purposively recruited from 2 university teaching hospitals in Scotland. Semistructured interviews were conducted with men affected by prostate cancer following the completion of EMA data collection. Data were analyzed using thematic analysis. Results The lived experience of prostate cancer included 6 superordinate themes: isolation in the healthcare system, lack of shared care plans, informational support, coping with prostate cancer, fear of death and dying, and vocational rehabilitation. The organizing theme electronic diary as an intervention included 4 superordinate themes: changing self-management behaviors, habitual experience, changing perceptions, and diary in daily life. Conclusion We observed that men participating in the EMA study described several methodological complexities, which need to be addressed through future research. Implications for Practice Importantly, there is a need for the health system to prioritize research and develop a more holistic approach to prostate cancer care in line with men’s preferences and needs in the future.

A mixed-method investigation into measurement reactivity to the experience sampling method: The role of sampling protocol and individual characteristics

“…The predicted decrease from 4.4s per item on day 1 to 3.4s per item on day 14 is comparable to what has been reported in a previous diary study, where response times evolved from 5s per item on day 1 to 2-2.5s on day 30 of data collection (Arslan et al, 2020). Alongside these changes in the data, many participants reported becoming more habituated to the measures over time in interviews, as has been documented in one previous study (Paterson, Primeau, & Lauder, 2019).…”

“…In the few studies that investigated reactive changes over time, researchers have mostly investigated linear changes in mean levels of variables (for exceptions, see Cruise et al, 1996;Zawadzki et al, 2019). However, this form may be inadequate, as it is possible that change manifests itself in an early stage of a study and flattens out over time (as suggested for example by Paterson, Primeau, &Lauder, 2019 andShrout et al, 2018) or that it appears only after a longer period of ESM. Additionally, there is indication that the perception of participants and the changes that can be detected in the data do not always converge (Aaron et al, 2005;Litt, Cooney, & Morse, 1998).…”

Supportive care needs of men with prostate cancer: A systematic review update

“…Some studies describing feelings of being ‘devalued’ or ‘sidestepped’ by the health care system, and of ‘powerlessness’ and ‘isolation’ within the system (Chambers et al, 2018; Schildmeijer et al, 2019; Wennick et al, 2017). Men relayed concerns about having limited time in consultation with their HCP and in some cases a lack of access to specialist nurses (Catt et al, 2019; Paterson, et al, 2019). However, when specialist nurses were accessible, they were highly valued, with men reporting that they provided reassurance, understanding and a sense of hope that was otherwise absent (Hanly et al, 2014; Thera et al, 2018).…”

“…Participants described poor consistency of information between professionals at the same hospital (Catt et al, 2019; Dunn, Ralph et al, 2020) and also how seeing a different specialist on every visit led to a reluctance to discuss sensitive topics such as sexual health (Phahlamohlaka et al, 2018). Discharge to primary and community care also posed problems, with some receiving fragmented psychological and psychosexual support and survivorship care following discharge (Ettridge et al, 2017; Paterson et al, 2019; Wennick et al, 2017). Some men reported a lack of clarity about what discharge actually meant and about the ability of nonspecialists to address persistent health worries:…”

“…A study of older men showed that these men have unique informational needs and may face greater obstacles to sharing their experiences with others (van Ee et al, 2018). Younger men with PCa, meanwhile, were less likely to be retired and often faced unique challenges around employment (Appleton et al, 2014; Burbridge et al, 2019; Chambers et al, 2015; Maharaj & Kazanjian, 2019; Paterson et al, 2019; Yu Ko et al, 2018, 2019). This is highly relevant, given the increasing numbers of men diagnosed with PCa at a younger age and the likelihood that these men will be required to live with damaging disease and treatment side effects for longer (Lin et al, 2009).…”