Invisibility, stigma and evolving identities: a qualitative study on hidden disability in patients with chronic...

Chronic intestinal failure (CIF) is a rare condition requiring long-term home parenteral support (HPS). While quality-of-life research exists, the psychosocial impact of hidden disability in this population remains unexplored. This study aimed to examine the lived experiences of individuals with CIF through the lens of hidden disability.

A single-site qualitative study was conducted at a national U.K. reference centre. Adults with CIF were recruited until no new themes emerged. Thirteen participants took part in semi-structured interviews developed with an expert-by-experience group. Interviews were transcribed and analysed using Braun and Clarke's inductive thematic analysis.

Four key themes emerged: visibility, stigma, disclosure, and identity. Participants described challenges arising from appearing "well" despite significant limitations, leading to judgment from others when using disabled facilities and difficulties accessing practical support. Stigma-both internalised and perceived-shaped disclosure decisions and contributed to emotional burden. Identity reconstruction was gradual, involving adaptation, loss of roles, and evolving sense of self. Over time, participants demonstrated resilience and strategies to maintain valued activities and adjust to a new identity.

This report suggests that hidden disability profoundly affects psychosocial wellbeing in CIF. Awareness among clinicians and the public is essential to reduce stigma and support disclosure. Interventions such as psychological support and peer networks may facilitate adjustment and improve quality of life.