Whakapai e Te Ara Ha: Asthma Self-Management Programme for the whanau of tamariki Maori with Asthma

INTERVENTION: The intervention group will receive a six‐month holistic, culturally‐based peer‐support programme. The intervention will comprise two phases: an initial 6‐week intensive 'whakawhanaungatanga’ (relationship building) period and an ‘awhi’ (support) maintenance period over the remainder of the 6 months. The 6‐week initial intervention is an approved research derivative of the Stanford Chronic Disease Self‐Management Program (CDSMP), it has been customised for our particular requirements (i.e. for the parent/caregiver of a child with asthma and culturally appropriate for Maori). The programme consists of six 2‐2.5 hour community‐based, peer‐led patient self‐management education workshops which take place weekly over six weeks. Sessions include general topics about chronic disease management: e.g. exercise; use of cognitive symptom management techniques; nutrition; fatigue and sleep management; use of community resources; use of medications; dealing with emotions (anxiety, depression etc.); communication with health professionals; problem‐solving; and decision‐making. The informational materials and training requirements for the CDSMP programme are available here: http://patienteducation.stanford.edu/programs/cdsmp.html. The CDSMP derivative incorporates materials approved for use within a New Zealand context, specifically the Diabetes and Healthy Food Choices guide, published by Diabetes New Zealand, and all materials incorporate the use of Te Reo Maori. The Children and Asthma booklet published by the Asthma and Respiratory Foundation of New Zealand will be provided to all participants (both cases and controls) as it outlines relevant disease specific information. The workshops will be led by Stanford approved peer‐leaders who have been specifically trained in the research derivative of the CDSMP programme. Peer leaders (a combination of research staff and lay community members) all have lived‐experience of long‐term condition management with asthma. Programme fidelity is ensured by direct oversight of all peer leaders and workshops by two CDSMP Master Trainers in accordance with usual Stanford CDSMP programme fidelity requirements. After the initial phase, research staff will maintain fortnightly telephone contact to check‐in with whanau (families) (the ‘awhi’ phase) to provide as‐needed support with referrals, healthcare navigation, additional skill development. Participants in this group are able to access care from their GP as usual. This culturally‐based approach differs from mainstream ‘intensive’ asthma management programmes in that it is Te Ao Maori (Maori worldview)‐centred. CONDITION: Asthma Wheeze PRIMARY OUTCOME: Asthma Control, as measured by the Child Asthma Control Test (C‐ACT). This will be completed by the child and the parent or caregiver. Healthcare Utilisation, expressed as the number of ED presentations or hospital admissions for asthma or wheeze over the previous 12 months, by interviewer administered questionnaire. The questionnaire was designed specifically for this study but derived in large part from the New Zealand Health Survey (Child Questionnaire) . Parent or caregiver activation, as measured by parent or caregiver Patient Activation Measure (PAM), a validated scale of activation. This will be completed by the parent or caregiver. ; SECONDARY OUTCOME: Child Quality of Life: ; Assessed via the Paediatric Asthma Quality of Life Questionnaire (PAQLQ) and EuroQol EQ‐5D‐Y Economic Impact (Cost effectiveness & Cost‐utility) ; Healthcare Utilisation ‐ Afterhours/Urgent GP visits ; This data will be collected by interviewer‐administered questionnaires from participants. ; The questionnaire was designed specifically for this study but derived in large part from the New Zealand Health Survey (Child Questionnaire) . ; Data collection for this outcome will include the detailed healthcare utilisation (as above), but additionally an assessment of direct medical costs (GP visits, prescriptions etc.) and indirect costs such as loss of productivity (e.g. days missed from school due to asthma, caregiver days missed from work due to asthma). Again, for the purposes of standardisation, these data will be obtained by interviewer‐administered questionnaire using questions based on the New Zealand Health Survey. ; The most appropriate economic evaluation method, given the data availability, is a cost effectiveness analysis in which the change in costs and health effects between those at baseline and study end are compared. In addition, however, we also aim to collect robust quality of life data, which will permit a cost utility study using the EQ5D‐Y with New Zealand weights applied. ; Parents/Caregivers Quality of Life: ; Assessed via the Paediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ) and the EuroQol EQ‐5D‐Y (Proxy 1 Version) ; ; Qualitative Assessment (Acceptability & Effectiveness) ; A Phenomenological Approach will be used to analyse participant experiences. Semi‐structured interviews will be undertaken with a purposive sub‐group of participants at the end of the intervention. Interviews will capture whanau experiences of the intervention, aspects that were successful, and areas requiring refinements or adaptations. Interviews will be recorded, transcribed verbatim, then organised and coded within NVivo (Trademark) software. INCLUSION CRITERIA: Parents/caregivers of children will be recruited prospectively through the Paediatric wards, Child Assessment Units, and Emergency Departments of participating District Health Boards (PROSPECTIVE). Additionally, invitations from eligible children with historic admissions/presentations to hospital or emergency departments from the same participating DHBs will supplement recruitment in batched reverse sequential order (RETROSPECTIVE). Parents/caregivers will be eligible to participate if their child is: a) between 4‐13 years, b) identifies as NZ Maori ethnicity (prioritised, self/parental reported), c) has a doctor diagnosis of asthma, d) has a previous hospitalisation or Emergency Department presentation for asthma or wheeze (ICD‐10‐AM code: J45,J46 or R06.2), and e) usually resides within the geographical catchment area of the participating DHB’s (District Health Boards).