A systematic review and meta-synthesis of qualitative studies of alopecia: Managing identity and appearance changes

Alopecia is a medical dermatology condition resulting in multiple psychosocial negative consequences in identity and appearence. Despite numerous qualitative studies examining the experience of people with alopecia, a comprehensive synthesis is lacking. This can obscure progress in research and minimize the impact of psychosocial support people with alopecia can receive. This systematic meta-synthesis aimed to critically integrate the existing literature to enhance psychological understanding of how people with alopecia manage issues about identity and appearance changes, and provide some evidence-based recommendations for clinicians working in the area of psychodermatology.

A systematic search of six databases: APA PsycInfo (OVID), Medline (OVID), Embase (OVID), CINAHL (EBSCO) and Scopus identified 22 eligible studies on the lived experience of alopecia among adults, adolescents and parents. The Critical Appraisal Skills Programme Qualitative Checklist was used to appraise the quality of the studies. Extracted data underwent inductive thematic analysis.

The synthesis, representing 990 people living with alopecia, identified five main themes, focusing on managing identity and appearance changes: (1) coming to terms with a changed identity; (2) the journey to acceptance; (3) complexities of concealing hair loss; (4) social influences in both facilitating and hindering adaptation; and (5) treatment experiences highlighting unmet needs. Findings reveal substantial variation in managing identity and appearance changes, with some individuals achieving acceptance swiftly while others struggle. Social reactions and personal interpretations significantly shape adjustment.

Alopecia profoundly impacts identity, coping, and social interactions, often accompanied by dissatisfaction with health care and treatment options. The reactions of other people and interpretations of these experiences appear to play a key role in adjustment. The review underscores the need for personalized, non-pharmacological interventions that address personal and social challenges. Greater co-production in health care training and intervention development is necessary to improve support for individuals with appearance-altering conditions.