A novel model of care for Maori with chronic airways disease

Brief name: Non-randomised, non controlled, pre-post pilot study. The intervention involves four steps. 1. Development of critical consciousness by the research team. Informational materials relating to health inequities, privilege, racism and patient centred care will be used for training the research team (this step will be undertaken prior to the step 2). a. The training of the research team will be self-directed and includes on a variety of written and audiovisual resources (appendix 14) that have been selected through the Principal Investigator's PhD studies. These informational materials have not been designed specifically for this study, and are available online. b. Although there are no specific strategies to ensure adherence to the training, the research team will spend 1-2 hours discussing the resources and their application to the clinical setting and current research study. This will ensure both members of the research team have a mutual understanding about the concept of critical consciousness and its clinical application. The expected duration of training is 10-20 hours. The research team consists of a respiratory physician (Principal Investigator) and research nurse. 2. Establishment of a 'connection' with participants to enable engagement. x1 face-to-face, person/whanau (family) focussed session involving the research team (respiratory physician and nurse) and participant/whanau (family). This session will provide an opportunity for the research team to begin to establish a therapeutic alliance with the participant/whanau and build a picture of the participant in their multidimensional context with the goal of optimising self management of chronic airways disease . No physical or informational materials will be used. Questionnaires will be completed during this session. The expected duration of this step is 60-90 minutes and will be undertaken in week 1. 3. Education session(s). a. Two or more face-to-face, person/whanau (family) focussed sessions involving the research team (respiratory physician and nurse) and participant/whanau (family), with the delivery of education relating to self-management of chronic airways disease. b. Education sessions will be provided until the research team are satisfied that the participant/whanau have an adequate knowledge and understanding of self management of chronic airways disease (the expected number of sessions is two, but may be up to four). c. Informational materials will include basic disease-specific information e.g. cause, symptoms, treatment, prognosis and action plans will be used. Resources will be from The Asthma and Respiratory Foundation www.asthmafoundation.org.nz, www.bronchiectasis.com.au and healthliteracy.co.nz. The expected duration of this step is 1-4 hours and will be undertaken in Weeks 2-3). d. A questionnaire (appendix 3) relating to knowledge and skills of chronic airways disease and self management will be completed by the research team prior to and following this session. This questionnaire has been designed specifically for this study and has not been validated. e. Records will be kept on session attendance. Participants will receive phone call reminders of future sessions to facilitate attendance. 4. Self management support sessions. a. These sessions will be undertaken over the phone (or face-to-face if required). b. The expected number of sessions is between 1 and 4. The number of sessions will be determined by the progress of the participant e.g. if the participant is struggling with self management, they may require more frequent support. The participant will have the contact details of the research staff within working hours, and will be provided with contact details of an after hours advice line (Healthline 0800 611 116) and emergency services (111). c. The duration of this step is expected to be between 1 - 4 hours. The duration of the phone sessions are expected to be between 5-30 minutes but may last for up to 60 minutes. d. Topics which may be covered include information about chronic airways disease and its treatment options, the self management plan, issues arising relating to health related behaviours e.g smoking cessation, medication side effects, exercise programme, issues relating to monitoring and managing symptoms and signs of chronic airways disease or other comorbidities, social issues. Where appropriate, referrals will be made to other services, e.g. social worker, psychologist, physiotherapist. e. These sessions will be undertaken in weeks 4-6. Questionnaires will be administered following this step in a wrap up session which will be in week 6.