Work

Maintaining a sense of normality with the help of others: Lived experiences of facilitators and barriers to Lupus adjustment

Year: 2024

Type: article

Abstract: Systemic lupus erythematosus (SLE) has a high detrimental impact on individuals' quality of life. Identifying key factors associated with SLE adjustment is crucial for intervention development, yet there is no previous research exploring the perspectives of individuals with SLE regarding illness adjustment' facilitating or hindering factors. In this qualitative study, 16 individual semi-structured interviews with Portuguese adults with SLE (13 women) were conducted to explore perceived facilitators and barriers to illness adjustment. A reflexive thematic analysis revealed that efforts toward maintaining a normal life, optimism, keeping engaged in meaningful activities, accessing reliable illness-related information, and having supportive relationships were core facilitators of SLE adjustment. Main barriers included inability to maintain normality, engaging in excessive activity, pessimism, being unsupported or stigmatized, and not having access to reliable illness-related information. These findings unveil potential targets for psychosocial and behavioral interventions aimed at enhancing the quality of life for individuals with SLE.

Source: Journal of Health Psychology

DOI: 10.1177/13591053241296190

Authors: Sofia Silva-Ribeiro, Sónia F Bernardes, Marta M Marques, Cristina A Godinho

Institutions: Iscte – Instituto Universitário de Lisboa, Centro de Investigação e Intervenção Social, Comprehensive Health Research Centre, Universidade Nova de Lisboa

Language: English

Topic: Systemic Lupus Erythematosus Research

Subfield: Rheumatology

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: hybrid

Estimated APC paid: $3,450