From "pre-relation" to "friendly" person-illness relation : a constructivist grounded theory study with adults living with eczema

Abstract

Eczema affects around 15% of adults globally and has a deleterious impact on patients’ quality of life and psychosocial well-being. Yet the illness experience of adults living with eczema has been understudied. This constructivist grounded theory study set out with a mission to explore the illness experience of adults living with eczema (ALWE), building an explanatory model of the constituents and processes for adaptation-maladaptation. A final sample of 30 people, 11 males and 19 females aged 18 to 63, joined this study. They had been living with eczema for 2 to 63 years, and each participated in either an in-depth interview or an art-based empowerment workshop. The findings from the in-depth interviews suggested that to achieve adaptation, termed “co-existence” in in-vivo codes, there were eight critical “illness-oriented” or “person-oriented” elements, including 1) attitude toward illness uncertainty, 2) activation of health agency, 3) attitude toward treatment outcomes, 4) recognition of self-efficacy in illness management, 5) degree of volition to enjoy desires, 6) appraisal of the nature of healthiness, 7) attitude toward suffering, and 8) perception of temporality. Based on these findings, ALWE were grouped into four types of person–illness relations (PIR), ranging from the more adaptive type of “friendly” PIR, to the least adaptive type of “trapped” PIR, with “enemy” and “estranged” PIR between the two. These PIRs formed after the “pre-relations” marked by the initial onset of eczema on their bodies. Each relation displayed a distinct profile in its multidimensional impact on personhood, ways of living with eczema and interaction with healthcare services. To connect the eight critical elements and the PIR typology, the tightrope resiliency model is constructed. The tightrope resiliency model proposes that the difference between PIRs is the various levels of tightrope resiliency, which is conceptualized as “multidomain capacity of individuals who are continuing to thrive and to co-exist with eczema by balancing the demands and threats of the illness and honoring themselves as a whole person.” To build tightrope resiliency, it is recommended that capacity be accumulated through the eight critical elements. The tightrope resiliency model can be a clinical roadmap for clinicians, helping professionals and ALWE, to support the care of ALWE in the course of their illness. Four themes, 1) “living with eczema as a one-person journey”, 2) “stigmatizing as a rite of passage”, 3) “ambivalent attitude toward parents” and 4) “being at ease” are grounded in the data of the art-based empowerment workshop. The data collected by this method and the in-depth interviews corroborated each other. Based on the findings, three areas were further discussed. First, the analysis finds that embracing rather than managing uncertainty would liberate ALWE from distress and hopelessness. Second, the analysis suggests that ALWE could be both patients and agents of health, and that taking up both roles would benefit their journey. Finally, implications for social work practice and research are suggested.