Can a 'take charge' intervention reduce incidence of repeat acute exacerbation of chronic obstructive pulmonary disease? A feasibility study

The experimental intervention is a "Take Charge Session" (TCS). This intervention is delivered to people in their homes following hospitalisation for an acute exacerbation of chronic obstructive pulmonary disease (COPD). A single 90-minute TCS to be conducted with the participants and their families within two weeks of discharge from hospital. This TCS will be manualised (i.e. follow a process outlined in a ‘Take Charge’ manual) and involve the following: • A trained lay research assistant will be allocated to each participant, matching for ethnicity as much as possible i.e. Maori research assistants will be allocated to Maori participants; Pacific Island research assistants will be allocated to Pacific Island participants. • The participant will be given the ‘Taking Charge’ manual, which they can keep and use to develop their own personal health programme. • The research assistant will conduct an individualised assessment with a structured risk factors and activity of daily living assessment designed to engage the patients and their family in the process of recovery. This will involve a process where they identify for themselves areas where they could make progress and set personal goals, i.e. self-directed rehabilitation. This assessment will be documented in the participant’s manual, and will use the following main headings: physical, emotional/mood, information needs, financial, family, work (paid and unpaid), and secondary prevention. However, participants will be able to add to these if other areas of personal development are identified. • The research assistant will guide the participant and their family to identify and document goals under each heading where relevant, which they can add to over time as they choose. • The participant and their family will then be encouraged to consider intermediate steps to the goals and how long it might take to achieve these. They will then be encouraged to think about ways of making these steps happen. Following this process, the participants and their family will be introduced to pulmonary rehabilitation. While the term ‘pulmonary rehabilitation’ will be acknowledged, the word ‘rehabilitation’ will initially be avoided as it is potentially perceived as stigmatising (most often related in popular culture to drug & alcohol dependency). Instead, PR will be referred to as a ‘health and wellbeing class for people with lung problems’. Information sheets about pulmonary will be specifically tailored for Maori, Pacific Island, and non-Maori/non-Pacific participants. These information sheets will be presented primarily in English, but will include terminology and concepts specific to Maori and Pacific Island participants to make it clear how PR relates to people from these cultures (e.g. addressing the ‘kaupapa’ of pulmonary rehabilitation for Maori participants). Throughout the TCS the participants and their families will be encouraged to ‘take charge’ of their recovery process, having seen for themselves where the key issues are and giving them basic skills and support to write a self-directed rehabilitation plan for themselves. The TCS manual will be retained by the person with COPD, to be used as they see fit, and they will not be required to share it with any health professionals. The research assistants delivering the intervention will complete a five day training programme prior to starting the study and receive ongoing training during the study. This training will include information about COPD and its management, but will also address issues of language use (avoiding stigmatisation of COPD), facilitating open discussion, increasing participant self-worth, and empowering participants to feel capable of achieving goals they set out to pursue. As this is a feasibility study (prior to a fully powered clinical trial) development of methods for evaluating intervention fidelity is one of the objectives of this trial. To do this we will undertake semi-structured interviews with all research assistants providing the TCS three months after they have received training in the intervention. These interviews will likewise be analysed using qualitative descriptive analysis and constant comparative methods, and will focus on the research assistants’ experience of the training and implementation of the behavioural intervention. To evaluate intervention fidelity we will video-record 12 episodes of the TCS being implemented with people from a range of different ethnicities, and compared these to a checklist of expected standards for implementation of the intervention. We will use both the interview and video data to refine and improve the training and support we provide the research assistants in the full study. Evaluation of treatment fidelity will be managed by the primary investigator (William Levack).