The Lived Experience of Patients and Family Caregivers in Managing Pneumoconiosis.

The daily challenges of patients with pneumoconiosis and their caregivers in living with and providing care for this disease remain unexplored. As guided by the interpretive description, we found that pneumoconiosis patients suffered from highly anxiety-provoking symptoms and physical debilitation, which evoked high levels of distress and sense of impending death. The reduced functional capacity disrupted patients' role functioning and self-esteem. The perceived stigma of the embarrassing symptoms and treatments further disrupted their self-concept and social lives. Providing care for pneumoconiosis patients was demanding and burdensome, which jeopardized family caregivers' physical, emotional, and social well-being, and the relationship strain with the patients added further frustration to them. The perceived caregiving gain supported them to fully engage in daily caregiving. To improve the well-being of pneumoconiosis patients, a comprehensive empowerment-based dyadic care model is required to optimize adaptive behavioral changes and self-esteem, and improve self-efficacy in disease management for this cohort.

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

AIM: This study aims to explore the illness experience and needs of patients with pneumoconiosis and the caregiving experience of their respective family caregivers. DESIGN: This is an exploratory qualitative study. METHODS: Participants will be recruited during the annual patient interview with purposive sampling. Those with a confirmed diagnosis of pneumoconiosis for at least 1 year will be eligible. Patients with different levels of physical dependency will be recruited. The respective family caregivers of these patients, who are ≥21 years 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. DISCUSSION: This 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. IMPACT STATEMENT: Pneumoconiosis 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. CLINICAL TRIAL REGISTRATION: This study has been registered at ClinicalTrials.gov (NCT04022902).