“I changed, I had to realize that I was wrong”: Identity gap management amidst evolving illness uncertainty

Doubt that a family member’s health issues are real, severe, or even possible entwines some of the most challenging aspects of medical, personal, and social uncertainty. Although several studies have examined doubt, this investigation focuses on how doubt evolves and foregrounds the identity implications of uncertainty. Guided by Communication Theory of Identity (CTI), the purpose of this study was to explore the identity gaps people experience as they navigate evolving doubt about a family member’s health and how they manage those identity gaps. We interviewed 33 individuals in the U.S. about a family member’s health issues that they doubted but began to believe. Our analysis uncovered three identity gaps among personal, relational, and enacted layers of identity: personal-enacted, relational-enacted, and personal-relational-enacted identity gaps. Participants managed identity gaps in two primary ways: (a) closing gaps by altering personal, relational, or enacted layers of their own identity; and (b) maintaining identity gaps by putting the locus of responsibility for identity change within their family member’s relational identities. This study offers theoretical implications for CTI as well as practical implications for individuals navigating doubt and evolving illness uncertainty in their family relationships.

‘It's a double whammy’: A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19

Objectives The purpose of this study was to explore the experiences of individuals with Parkinson's through the theoretical lens of illness uncertainty during the first UK full lockdown period (March–June 2020) put in place due outbreak of the COVID-19 pandemic. Methods Individual semi-structured interviews were carried out via telephone in May 2020 with 10 individuals with Parkinson's (six men and four women) recruited from Parkinson's UK. Interviews were recorded and transcribed verbatim, and thematic analysis was adopted to analyse the resulting data. Results Four overarching themes emerged from the interview data: (1) COVID-19 amplifying existing fears and difficulties around the uncertainty of Parkinson's; (2) practical and psychological efforts to manage uncertainty; (3) benefit-finding as a way of acknowledging the positives of lockdown; (4) risk and future management in the context of uncertainty. Discussion Participants reported a range of implicit and explicit strategies to cope with the ‘double whammy’ of uncertainty caused by having Parkinson's during a global pandemic. While these were generally successful in maintaining well-being, it is important that such successful accounts are used to help inform novel strategies and interventions targeting individuals who might need additional support.

Reexploring Children’s Illness Uncertainty and Management Experiences with Female Japanese Cancer Survivors

The purpose of our study was to examine what illness uncertainties (IU) children experience now and how they manage it, with the aim to use the findings to construct long-term, comprehensive developmental care for children with illness. We conducted interviews with six Japanese adolescent cancer survivors, all recruited from the same hospital in Tokyo, Japan. Using directed content analysis, we first present new aspects of children’s IU, the first one being the IU of hospitalization itself, which may be frequently experienced by younger children. We also present the necessity to distinguish and examine IU with and without answers, and discuss the uncertainty of “why me?” Also, in terms of IU management, we present the informative value “role models” have in terms of reducing IU, and depict how uncertainty acceptance might be a new goal a patient aims to achieve.

The psychological impact of active surveillance in men with prostate cancer: implications for nursing care

Introduction: Active surveillance is a conservative management approach to treating prostate cancer involving regular testing and close monitoring by the health professional. The aim of this literature review is to establish whether men experience a psychological impact of active surveillance and what the prevalent effects might be. Method: The search was carried out in three databases: CINAHL, Medline and PsycINFO. Articles published in English, from October 2015 to March 2018, which focused on the psychological impact of active surveillance, were included. Findings: A total of eight quantitative studies were included in this report. The review identified key psychological impacts of active surveillance, including anxiety, sub-clinical depression, illness uncertainty and hopelessness. Active surveillance was seen by some patients as a positive treatment approach that limited the side effects associated with active treatment. Conclusion: The evidence found a negative impact of active surveillance might be felt by men at any stage during treatment and at differing levels of severity. The article highlights key demographic areas, including ethnicity and age, for future research and recommends more qualitative studies are conducted.