Developing a Model of Health and Supportive Care for People with Silicosis in Australia.

Abstract

Rationale: Silicosis is an occupational lung disease caused by the inhalation of respirable crystalline silica (RCS) dust. Stone benchtop industry workers exposed to RCS are at high risk of artificial stone silicosis, a totally preventable disease with no cure and limited treatment options. Little is known about the impact and daily challenges associated with living with the disease.

Objective: This study aimed to develop a model of health and supportive care addressing the needs of people with silicosis based on their lived experiences.

Methods: Patients with silicosis identified from two Australian tertiary clinics were invited to participate in semi-structured interviews by telephone from May to August 2024. Interviews explored the impact of silicosis on health, wellbeing, and supportive care needs. Interviews were transcribed verbatim and thematic analysis was used to identify key elements of a health and supportive care model.

Results: 40 people were interviewed. All were male with an average age of 42.80±9.24 years (range 29-62 years). Major themes included: unclear pathway to diagnosis; uncertainty regarding prognosis; limited information on silicosis especially in other languages; significant financial impact related to loss of occupation, with substantial effects on mental health; and challenges of managing life with silicosis. Components of the person-centred, individualised care model included: lung health, mental health, reliable information, occupational support, fitness programs, lifestyle, peer support, care pathways and coordination.

Conclusion: People with silicosis have a range of unmet health care and supportive needs. The proposed model provides a person-centred approach to meet the unique needs of this cohort.