Understanding Alveolar echinococcosis patients’ psychosocial burden and coping strategies, 2023, Nikendai et al

[Sly Saint]

Abstract
Background
Alveolar echinococcosis (AE) is a serious parasitic zoonotic disease that resembles malignancy with clinically silent infiltrative growth predominantly involving the liver. AE patients show high levels of comorbid psychological burden and fear of disease progression. This study aimed to examine AE patients’ perspective on their disease-related psychosocial burden using qualitative methods.

Methods
We conducted N = 12 semi-structured interviews with AE patients focusing on their disease-related psychosocial burden, coping strategies, information seeking behavior, and subjective illness concepts. To this end, AE patients from a previous quantitative cross-sectional study were invited to participate. After verbatim transcription, interviews were analyzed thematically.

Results
After analysis, data was grouped into five main themes: A) Perceived disease-related burden, B) Coping with disease-related burden, C) Disease-related impact on their social environment, D) Facing the future with the disease, and E) Disease-related information seeking behavior and subjective illness concepts. All participants perceived AE as a severe disease with inextricably linked biological, psychological, and social effects. Key positive influences reported included the provision of information and access to informal and formal support, including the ability to lead active personal and professional lives for as long as possible. Self-directed, web-based information seeking often led to increased feelings of hopelessness and anxiety.

Conclusion
Our findings underscore the need to consider psychosocial morbidity in AE patient management. To reduce psychological burden, address disease-related apprehensions, and to prevent stigmatization, health professionals need to provide AE patients with comprehensive disease-related information to improve patient and social awareness.

https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0011467#sec022

 

[Sly Saint]

A) Perceived disease-related burden (52).
A.1 Physical burden (7). The interviewees reported a wide range of disease-related, debilitating physical symptoms, including chronic fatigue, listlessness, reduced physical stamina, and decreased overall energy levels which impaired their everyday functioning and their quality of life.

A.2 Mental stress caused by the difficulty of finding a diagnosis (11). The interviewees reported that a considerable amount of mental strain had been caused by the difficulty of finding a diagnosis for their symptoms. Many interviewees reported that a malignant tumor was often suggested as a differential diagnosis at the beginning of the diagnostic process. Consequently, the interviewed individuals were often faced with the existential fear. Discovering they actually had AE was initially a relief to them, as they felt they were no longer facing certain death.

A.3 Mental stress due to lack of information about cause and treatment options (12). Many respondents described how they often agonized over the question of whether they themselves were to blame for their illness or could even have prevented it by behaving more cautiously. Furthermore, particularly after initial diagnosis, the interviewees reported how little they had known about their own disease and the available treatment options. Some described that when they had initially sought information, they had been misinformed about the nature of their disease and some had believed it was terminal at first.

Patients suffering from somatic diseases and from comorbid mental illness as well, show lower somatic treatment adherence [21–24], poorer recovery outcomes [25], suffer from higher mortality rates [26–28], and produce increased health care costs [29]. Furthermore, burdensome somatic symptoms have been shown to increase 2- to 3-fold in patients with depressive and anxiety disorders [30,31]. Our findings underline that effective AE treatment must involve a multidimensional approach addressing both the psychosocial and physical components. The reported somatic depression symptoms suggest that psychological treatment in terms of psychotherapeutic and psychopharmacological interventions should be considered

Limitations
This study has several limitations. First, as is customary in qualitative research, it relies on self-report interviews. Accordingly, we cannot rule out a social desirability bias. Such a bias might even be more prominent, as interviews were conducted in a clinical setting where AE patients seek help for medical monitoring and check-up. Also the feelings of shame experienced by AE patients might have led to the detention of relevant information. Second, the sample size was rather small. We conducted 12 interviews in total, 4 of which were by telephone. However, literature suggests, that about 12 interviews are sufficient to reach content saturation [46], which was the case in the presented study. In order to learn more about differing socio-economic aspects and age on research topics such as internet use, further research is needed, as the presented sample size is too small to allow such subgroup orientated conclusions.

 

[rvallee]

Why does this stuff keep getting funded when literally every single damn paper says exactly the same thing? Psychological medicine has become nothing but a paper-publishing churn, has zero concern with any level of usefulness.

With only tiny differences, every single patient group has the exact same concerns, relative to their level of impairment. There are differences but they are small enough to be irrelevant. This field is basically becoming an even worse version of homeopathy, trying every single combination of possible pure distilled water. There is zero need to do the same thing, sometimes hundreds of times over, for every single illness, disease and condition.

This is so generic it has zero meaning at all:

A) Perceived disease-related burden, B) Coping with disease-related burden, C) Disease-related impact on their social environment, D) Facing the future with the disease, and E) Disease-related information seeking behavior and subjective illness concepts

And it is clearly the themes chosen by the researchers from the start, the exact same found in thousands of papers. It's as genuine as reality TV.