Chief Investigator
Anne Holland
Organisation
Monash University
Awarded funding
$195,377
People living with silicosis face many uncertainties and stressors. Prognosis and future healthcare needs are often unclear, and changes to work roles may impact on psychosocial and financial wellbeing. Many people with silicosis were born outside Australia and may have limited access to health information due to language barriers. Little is known about the lived experience of younger people with silicosis, or their preferences for long-term supportive care.
The aims of this study are to (1) understand the experiences and care needs of younger people with silicosis; and (2) identify key components of a long-term supportive care model.
We will recruit people with silicosis aged under 65 years old who have worked with manufactured stone. We will include people with varying disease duration, geographic location (metropolitan and regional) and cultural background. In Stage One, individual interviews will be conducted by telephone or videoconference, to gain an in-depth understanding of experiences and needs.
Questions will explore lived experience of silicosis, including physical and psychosocial wellbeing, health literacy and information needs, and preferences for long-term support. Analysis will be conducted using the principles of grounded theory. In Stage Two, online focus groups will be used to confirm or refine Stage One results and identify key components of a long-term supportive care model.
This project brings together researchers with expertise in dust diseases, respiratory medicine, qualitative research, supportive care and consumer engagement. A key outcome will be a proposed model of supportive care that reflects the experiences, needs and priorities of young people with silicosis.