The experience of patients and family caregivers in managing pneumoconiosis in the family context: A study protocol.

Abstract

AIM\nThis study aims to explore the illness experience and needs of patients with pneumoconiosis and the caregiving experience of their respective family caregivers.\n\n\nDESIGN\nThis is an exploratory qualitative study.\n\n\nMETHODS\nParticipants will be recruited during the annual patient interview with purposive sampling. Those with a confirmed diagnosis of pneumoconiosis for at least 1\xa0year will be eligible. Patients with different levels of physical dependency will be recruited. The respective family caregivers of these patients, who are ≥21\xa0years of age, assuming the role as primary caregivers of a pneumoconiosis patient will also be invited to join. In-depth interviews will be conducted in patients home separately for patients and their caregivers and a home environment assessment will also be undertaken. The interview data will be transcribed verbatim, managed with the software NVivo 11 and analysed with content analysis. The ethical approval has obtained, and this study is supported by a research grant from the Pneumoconiosis Compensation Fund Board of Hong Kong on 14 August 2018.\n\n\nDISCUSSION\nThis study will advance the knowledge on how pneumoconiosis patients and their family caregivers manage the disease in the family context. The findings of this study can inform the development of a family-oriented care model to support the pneumoconiosis patients and their family caregivers to manage this condition better.\n\n\nIMPACT STATEMENT\nPneumoconiosis is the most common type of occupational lung disease in the Chinese population. These patients require long-term comprehensive services and support to assist their disease self-management. However, little is known about how these patients and their family caregivers manage the disease in the family context. The current study addresses this gap by exploring patients illness experience and their family members caregiving experience, which is timely to inform the design of family-oriented model of care to support this clinical cohort.\n\n\nCLINICAL TRIAL REGISTRATION\nThis study has been registered at ClinicalTrials.gov (NCT04022902).