Psychosocial Nursing Diagnoses of Individuals With Myalgic Encephalomyelitis-Chronic Fatigue Syndrome: A Descriptive Study.

Abstract

Aim: To describe the prevalence of psychosocial nursing diagnostic labels and their relationship with sociodemographic characteristics in adults with myalgic encephalomyelitis-chronic fatigue syndrome (ME/CFS).

Design: This is a cross-sectional descriptive study.

Methods: Population: Adults with ME/CFS.

Inclusion criteria: Being 18 years of age or older, having a medical diagnosis of ME/CFS and being an active member of a patient association. Data collection took place between May and July 2022 using an online and paper-based ad hoc form that included sociodemographic and clinical data. Psychosocial diagnostic labels were obtained using the Questionnaire for Psychosocial Nursing Diagnosis (QPSND). In addition to a descriptive analysis, the relationships between the diagnostic labels obtained were explored through a multiple correspondence analysis, which was supplemented by a hierarchical cluster analysis of the results of the latter.

Results: Forty-eight participants completed the form. Their mean age was 52.5 years (SD = 6.81), 95.83% were female, 70.83% had a university education, and 35.42% were actively working. Sixty-six percent had some degree of officially recognised disability, and 16.67% had an officially recognised degree of dependency. The most prevalent diagnostic labels were Powerlessness (79.17%), Ineffective Coping (62.5%), and Fear (62.5%). The multiple correspondence analysis and subsequent cluster analysis identified profiles of individuals with ME/CFS: one profile (cluster 3) had greater psychosocial involvement based on the diagnostic labels assigned, as well as a lower educational level and higher symptom intensity. The other two profiles appear to bring together mainly employed or retired individuals with lower severity and frequency of symptoms, and who are at risk of developing psychosocial human responses.

Conclusions: Participants have a high prevalence of psychosocial diagnostic labels, suggestive of the psychosocial distress concomitant with ME/CFS. Nursing diagnoses allow subgroups of affected individuals to be differentiated and aligned based on differences in sociodemographic and clinical characteristics.

Implications for the profession and/or patient care: We believe that this is a pioneering study in the identification of psychosocial nursing diagnostic labels of individuals with ME/CFS. Having profiles of people with ME/CFS associated with psychosocial nursing diagnoses facilitates their identification in healthcare practice and makes it possible to anticipate recommended interventions.

Impact: What problem did the study address? ○ This study aims to ascertain the prevalence of psychosocial nursing diagnostic labels in individuals with ME/CFS. It also aims to identify more sociodemographic and clinical characteristics associated with these psychosocial problems. What were the main findings? ○ Individuals with ME/CFS had a high prevalence of psychosocial nursing diagnostic labels. Three subgroups of participants with ME/CFS were identified based on their diagnostic labels. Characteristics such as lower educational level, higher symptom intensity, and a diagnosis of fibromyalgia and Sjögren's syndrome, in addition to ME/CFS, were associated with the subgroup that had the most adverse psychosocial diagnostic profile. The other two subgroups appear to bring together mainly employed or retired individuals with lower severity and frequency of symptoms and who are at risk of developing certain psychosocial human responses. Where and on whom will the research have an impact? ○ This study may have an impact on both nursing management and clinical practice by informing the design of care plans for patients with ME/CFS.

Reporting method: STROBE.

Patient or public contribution: Contributions from individuals with ME/CFS were taken into consideration for the study design, especially regarding the sampling and data collection procedures. The results of the study were presented publicly at research conferences attended by health professionals and members of associations of people living with ME/CFS.