None listed
Conditions
Brief summary
Asthma currently affects about 26% of NZ children, a rate that is amongst the highest in the world and the burden of asthma to these affected families is considerable. Forty-two percent of asthmatic children are ‘uncontrolled’, 12% miss school each month, and 14% attend an emergency department or are admitted to hospital with asthma each year. tamariki Maori (Maori children) suffer higher severity of asthma symptoms; have significantly higher rates of hospitalisation; are less likely to have a peak flow meter or asthma action plan; and fewer are prescribed regular inhaled corticosteroids. Health literacy has increasingly been recognised as an important modifiable determinant of health, especially for people with long-term conditions. Clear evidence demonstrates associations between parental literacy and health outcomes, particularly for young children. Health literacy also strongly correlates with poor asthma knowledge and improper inhaler use. We have previously shown that tamariki Maori with asthma face a significant knowledge burden, on-going challenges with chronic disease management, and often struggle with the complexities of navigating healthcare systems. Whanau expressed a clear aspiration for better asthma services which develop their asthma skills in a mana enhancing way while supporting their own capacities and resilience. This study will assess a whanau-centered, culturally tailored, health literacy based intervention, derived from a well validated and internationally recognised intervention programme. The Chronic Disease Self-Management Programme (CDSMP) has been widely demonstrated to lead to improved health outcomes for people with chronic illnesses such as asthma in adult populations. We have adapted this programme for use within a Kaupapa Maori framework and for completion by the parents/caregivers of children with asthma. Participants in the intervention group will enter an initial 6 week phase involving peer-led workshops. This will be followed by a 6 month support phase to foster the building of health literacy skills, activation (empowerment) and self-management in tamariki Maori with asthma and their parents/caregivers. The control group will receive usual care including asthma information resources and GP followup. The study aims to assess the effectiveness of this intervention on patient activation, asthma control, health-related quality of life, cost effectiveness, and healthcare utilisation.
Interventions
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.
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.
Sponsors
University of Otago- Wellington
Study design
Allocation
Randomised controlled trial
Intervention model
Parallel
Primary purpose
Educational / counselling / training
Masking
Blinded (masking used) (Outcomes Assessor)
Eligibility
Sex/Gender
All
Healthy volunteers
Yes
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).
Exclusion criteria
Parents/caregivers will be excluded from participating if their child: a) has previously been enrolled in the study; b) has a sibling on the study; c) does not reasonably expect to remain in the region for the duration of the intervention and follow-up or d) have other chronic respiratory comorbidities that may be deemed to interfere with the study (e.g. bronchiectasis).
Outcome results
None listed