Self-management package for people with pulmonary fibrosis: a study to determine feasibility and acceptability

Brief name: Use of self-management package with support from health professional A self-management package developed by the research team will be provided to the participants as part of the intervention. Participants can choose to receive an electronic (i.e., PDF format) or hardcopy of the package. The purpose of the package is to facilitate effective self-management in people with pulmonary fibrosis (PF), by providing access to reliable information and resources that empowers them with the knowledge, skills and confidence to take an active role in the management of their lung disease. This package includes 12 modules that were considered essential for self-management in PF in a previous Delphi study. These modules cover areas such as managing symptoms, co-existing medical conditions and medications; understanding treatment options and clinical trials; role of oxygen therapy, pulmonary rehabilitation and regular physical activity; smoking cessation advice and support; accessing community support; and how to communicate with others when living with the disease. Each module provides key information regarding the topic and provides access to external online information relevant to the topic including websites, fact sheets, booklets, videos and webinars. These external resources have been verified by the research team as reliable, current, and relevant resources to support people with PF in self-management. Participants will have direct access to these external resources from within the package through hyperlinks embedded in the title of each resource. Participants do not have to view all external resources listed in the module, they can choose the ones that are relevant to them. Depending on the number of external resources that the participant views, the estimated time required to complete a module is approximately 30 minutes to 3 hours. In addition, this package provides guidance for participants to set personal goals for managing their health and includes a symptom diary for participants to document their symptoms. Participants who receive an electronic or hardcopy of the package can read the package anywhere that suits them. Participants who do not have computer or internet access will be guided to use other methods such as using a mobile phone or a computer at a local library, or seeking assistance from family or friends to access the online external resources. These participants will also be offered an opportunity to use a tablet provided by the research team that can be accessed at the Alfred Centre in Melbourne, Australia. A health professional specialised in PF care will provide support to each participant via telephone or telehealth 5 times over the 8-week intervention period, at week 1, 2, 3, 4 and 8 following randomisation. The aim of this support is to facilitate the effective use of the self-management package. Depending on the participant’s needs, the health professional may provide guidance or assistance in identifying appropriate modules, setting and achieving health-related goals, monitoring progress, assisting with addressing possible challenges and to provide feedback or clinical recommendations throughout the 8-week intervention period. Adherence to completing the module/s and reaching a health-related goal (if the participant has set a goal) will be monitored and documented by the health professional conducting the calls, on the study-specific telephone call record sheet. Each session is expected to last approximately 15-30 minutes. Attendance at each of the 5 sessions, the duration of each call and the type of support provided will be documented for each session using the telephone call record sheet. During session 1: At one week following randomisation, a health professional will support the participant in identifying the appropriate modules to access, setting a goal and building a plan to reach that. All participants in the intervention group will be encouraged to set at least one goal and choose at least one module to read throughout the 8-week intervention period. During session 2 to 5: At weeks 2, 3, 4, and 8 following randomisation, a health professional will discuss with the participant their progress on their chosen module/s and goal plan (if they have one), their confidence in reaching the goal and managing their health, and provide feedback and clinical recommendations where appropriate.