The wounded self—lonely in a crowd: A qualitative study of the voices of children living with atopic dermatitis in Hong Kong

Abstract

Atopic dermatitis (AD) imposes significant physical and psychosocial burdens on affected children. However, little has been done to learn from the subjective experiences, perspectives and emotions of children living with AD. Their voices are not heard in healthcare settings. This study aims to share these children's voices and provide a deep understanding of the subjective experiences of children living with AD. We conducted qualitative research by conducting semi‐structured interviews and analysing the drawings of 17 children in Hong Kong aged between 8 and 12 years who were diagnosed with AD. Using a phenomenological approach, we transcribed, coded and described the interviews. We found that for the children in this study, living with AD meant contending with an accumulation of challenges and crises. At the individual level, the essential experience of living with AD manifested a vicious cycle of skin and mental issues. At the family level, conflicts between children and parents concerning AD management coexisted with parental support. The children commonly experienced bullying and isolation in school and discrimination and stigmatisation in their neighbourhood, thereby making living with AD a traumatic experience. The synergy between individual and environmental factors contributed to shaping an incapable and wounded “self” living with AD. Based on our findings, we propose a child‐centred biopsychosocial framework for understanding the living experiences of children with AD. This study suggests different practice strategies for healthcare professionals working with the individual challenges experienced by children living with AD and the challenges these children experience in their family, school, and neighbourhood. The needs of these children should be addressed through an integrated, holistic approach for improving their long‐term health outcomes.

Skin Disease in Children: Effects on Quality of Life, Stigmatization, Bullying, and Suicide Risk in Pediatric Acne, Atopic Dermatitis, and Psoriasis Patients

“…When the children heard these demands from their parents, they felt misunderstood and criticized as five of the participants reported being scolded and beaten for scratching [20]. This cycle of desperation and helplessness continued as the children resisted their parents' demands to take their medications [20]. The children in this study understood the benefits of applying the ointments and taking the oral medications for their AD, but some of the treatments they were prescribed were uncomfortable for them to use [20].…”

“…In a qualitative study of 55 pediatric patients with AD living in Hong Kong, most of the children listed their primary physical challenge as intense pruritus, which interfered with their sleep, diet, play, and sports. Frustrations with family members often revolved around parents telling the participants to stop scratching [20]. When the children heard these demands from their parents, they felt misunderstood and criticized as five of the participants reported being scolded and beaten for scratching [20].…”

“…Frustrations with family members often revolved around parents telling the participants to stop scratching [20]. When the children heard these demands from their parents, they felt misunderstood and criticized as five of the participants reported being scolded and beaten for scratching [20]. This cycle of desperation and helplessness continued as the children resisted their parents' demands to take their medications [20].…”

Views and experiences of managing eczema: systematic review and thematic synthesis of qualitative studies*

“…56 In conclusion, much qualitative research on eczema has focused on the views and experiences of adults and parents/carers. Although more recent research has shed light on the impact of eczema on children, 57 further research is needed from the perspective of children and young people. There is a need for health professionals to address beliefs and concerns about eczema treatments, address the significant psychosocial impacts of eczema and burdensome nature of treatments, including practical, clear, consistent advice about treatments and strategies to overcome perceived difficulties.…”

Children’s Views and Experiences of Treatment Adherence and Parent/Child Co-Management in Eczema: A Qualitative Study

“…Previous qualitative research amongst children with eczema has predominantly focused on the psychosocial impact of eczema [ 22 , 23 , 24 ]. One qualitative study exploring children’s experiences of using silk garments for the treatment of eczema [ 25 ], highlighted children’s frustration with needing to use topical treatments and a sense of disappointment that their hopes and expectations for a “miracle cure” had not been met by using the silk garments.…”