He Māramatanga Huangō: Advocacy for Asthma

NewsroomPlus.com It may be a fact of the news cycle that Thursday night’s release of research focused on asthma health literacy for Māori children in New Zealand – He Māramatanga Huangō – wasn’t destined to make the 6pm bulletin. That’s a sad fact. Asthma is a respiratory condition that literally takes your breath away. It can and does kill. In New Zealand it’s well known as a condition that affects a large proportion of the population – with up to one in nine adults and one in seven children taking asthma medication. In terms of knowing someone with asthma, that’s a small degree of separation. It seems natural then to think of this as an area of health focus that would be being constantly prioritised, with every effort being made to provide, to use the words of Governor-General Sr Jerry Mateparae as Asthma Foundation patron: “new way(s) forward”. Large numbers of children are still being hospitalised with asthma: 3,730 in 2013. Many of them with a potentially life threatening attack. The figures for Māori and Pacific New Zealanders are undeniably adverse, with rates of hospitalisation that are estimated to be 3 to 4 times higher than European New Zealanders.

Even a brief korero with lead researcher Bernadette Jones and co-author Dr Tristram Ingham last night made it obvious that this was a highly practical project. Commissioned from the University of Otago by the Ministry of Health and Asthma Foundation it followed a very targeted and tikanga aligned methodology that is also obviously very timely. A feature of the launch event was the respect shown to the often unheard voices of the large number of people interviewed for the research, be that the online survey across 800 health professionals with a role in asthma management, or the seventeen in-depth, semi-structured interviews and three focus groups held with Māori whānau who have at least one child with asthma aged 4-18 years.

Māori tamariki experience a greater prevalence of severe asthma

As stated in the report the inequalities apparent in the greater prevalence of severe asthma experienced by Māori tamariki, leading to other consequences such as more days off school for asthma-related illness, are striking. Or as Mrs Jones put it: “These are statistics we don’t want to have”. Even more striking is the point made that while the prevalence of asthma has decreased for New Zealand European children over the past few decades, this reduction has not occurred for Māori. Based on the report’s unequivocal statement that addressing the burden of childhood asthma for Māori is “a critical issue warranting urgent action”, it was tragic to read that many recommendations for strategies to reduce these disparities that have been available since a 1991 ministerial review of Maori asthma, He Mate Huangō, remain unimplemented. Dr Ingham showed admirable professional restraint in speaking about a health system that has simply not been responding effectively. On the surface it certainly seems inexplicable that despite a higher prevalence of disease and severity of symptoms, Maori children are dispensed fewer preventive treatments, resulting in poorer overall asthma control.

Focussing on a new model of care

What impresses about this research is that it doesn’t indulge in finger pointing, but rather zeroes in on what a new model of care would look like and how that would work. Dr Ingham: “We realised early on in this research that context is everything. (Taking into account) what interactions late at night are like, interactions between people who may never have met before”. Aside from asthma not being located within a chronic disease management approach – as it’s framed by the World Health Organisation – or within a health literacy and cultural competency context, the current root problem can be thought of as an unfortunate series of failures to communicate, combined with a frustrating set of constraints on exchanging information – beginning with too little time and including other factors such as location and cost. On the health professionals side, this research confirmed that genuine efforts are being made to recognise the information needs of patients and to deliver understandable information. Equally from a whanau point of view significant efforts take place to try to navigate what is frequently an asthmatic rollercoaster, using as much knowledge and skills as available. What came through loud and clear at this report’s launch is that the very reactive and episodic bias of the acute care model of the health system is what, in reality, works against optimal asthma management. It’s a system built around sitting back and waiting for children to become unwell before responding to their asthma.

“This research report is a taonga”

In the opinion of Paula Searle, acting Ministry of Health Deputy Director General of Māori Health, having this systemic issue headlined elevates He Māramatanga Huangō (Understanding Asthma) to being “one of the best research reports we’ve ever funded… a real treasure, or taonga”. In her words of endorsement and support for the report, Searle highlighted not her own words but some of the numerous quotes from the perspective of those most affected by asthma as contained in He Māramatanga Huangō. “I find these very emotional, many of them make me cry … and that shouldn’t be happening,” she added. From whānau interviews it emerged that there is a widespread belief amongst Māori parents that asthma is a normal part of gowing up in their community. There was, as recorded in the report, “a normalisation or expectation that their children would be hospitalised with asthma, without realising that many of these hospitalisations could be prevented”. It was apparent from the interviews that parents and whānau wanted more knowledge about a range of aspects concerning asthma management, but they felt asthma education was largely limited to medications. Some parents and whānau reported having never been taught what causes asthma or what triggers an asthma attack. As supported by this quote:

“…we didn’t know that she was that severe, we were giving her the reliever but that wasn’t doing anything and we didn’t know, I didn’t know that there were other things we were meant to watch, we had a bad case before we got the education. We always took it seriously but we weren’t educated about what the different stages were.”

As summarised in the report, most whānau were “under-confident in their own abilities”, and expressed frustration at the lack of proactive holistic care, and failure of the health system to respond to their needs. And again, despite using a range of informal techniques to gauge understanding, many health professionals admitted they found it particularly challenging to find a way to assess whether the parent or child – their patient – had fully grasped key asthma messages. Mrs Jones: “Whānau can’t be blamed or judged, nor health professionals, for confusing and inconsistent messages. Many sufferers are never actually given the diagnosis of asthma, and who among us is actually trained in understanding, let alone communicating, anatomy or physiology?” Dr Ingham: “Could you explain all the complexities in five minutes? I doubt it… because it’s a high level order of learning (that takes time)”. As Dr Ingham says this isn’t being taken seriously enough. Surely that has to change. [This is part 1 of a series by the NewsRoom_Plus team of Stephen Olsen, Shereel Patel-Gaunavinaka and Rupeni Vatubuli] _________________________________________________

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Excerpt, page 73: 

Mātauranga (Knowledge)

Delivering Understandable Best-Practice Asthma Advice for Māori Children Health System (Macro Level) The health system needs to recognise the burden of asthma facing New Zealand society, and Māori children in particular. It must take action to promote widespread public awareness of asthma, its causes, and the potential seriousness of the condition. It is vital that updated New Zealand-specific guidelines for the management of childhood asthma be developed that cater for our unique population, specific health environment and latest therapeutic options in order to ensure the provision of consistent, up-to-date, evidence-based best-practice information. Recommendations

• Promote enhanced public awareness of asthma, its potential seriousness and preventive measures.
• Work in partnership with the education sector to integrate fundamental asthma health knowledge into school curricula.
• Update New Zealand-specific best-practice management guidelines for paediatric asthma.
• Develop step-wise learning objectives and a curriculum for asthma management.
• Fund research that provides evidence for effective asthma interventions that activate and empower whānau to support children with asthma.

Health Organisations (Meso Level) The maintenance of clinical skills is an on-going task. Health organisations need to assume responsibility for the maintenance of best-practice standards within their organisation and for the provision of in-service training of their staff with respect to asthma management. Asthma is a chronic disease, and asthma education is a longitudinal, step-wise process. Information systems are important to monitor asthma care, alongside the provision of asthma education, to ensure elements are not accidentally omitted and relevant items are reinforced periodically. Recommendations

• Invest in regular in-service training for staff on asthma best practice. • Utilise GP patient management systems to provide longitudinal asthma education monitoring.
• Develop asthma training packages for patients, whānau and communities.
• Nominate a staff member to the role of ‘asthma champion’ with responsibility for leading uptake of best-practice guidelines, resource implementation and quality assurance monitoring.
• Include the populations served in the design, implementation and evaluation of health information and services.

Health Professionals (Micro Level) Health professionals need to be able to provide up-to-date best-practice asthma care for Māori children which takes account of the: age of the child; level of severity or treatment step; existing knowledge; learning style; and cultural preferences of the whānau. All children with asthma should have clear, individualised, asthma management plans (developed in partnership with the whānau) and be able to effectively implement them. Asthma education needs to focus more broadly than disease-specific knowledge and medication compliance to incorporate holistic objectives, including health promotion, self-management and disease prevention. Recommendations

• Maintain a high level of competency in current best practice for the management of childhood asthma.
• Ensure all children have access to individualised, understandable asthma action plans.
• Follow a step-wise education plan when providing asthma support to Māori patients.
• Provide updated electronic access to asthma plans for whānau, community health workers and schools.
• Routinely utilise specialist (medical and/or nursing) respiratory and paediatric expertise to effectively manage those whānau with complex health-care needs.

Whakaakoako (Teaching Strategies)

Using Effective Strategies to Communicate about Asthma with Māori Children Health System (Macro Level) The health system needs to recognise and promote the importance of health literacy and chronic disease management competencies for all health professionals and other health-care workers involved in asthma management. Health professional bodies and academic training institutions need to ensure adequate provision of training in these areas and provide monitoring in the attainment of these skills. The health system must also promote the integration of cultural competency, cross-cultural communication and holistic Māori models of health into all levels of the health sector to ensure the health workforce are equipped to engage in meaningful collaborative partnerships with Māori patients. Recommendations 

• Influence medical, nursing and pharmacy schools and other health training programmes to teach health literacy and chronic care management to students.
• Establish and monitor competencies for all health professionals in health literacy education and chronic disease management.
• Set an expectation within health policies and strategies that all health services will deliver high- quality care that focuses on meeting the health needs and aspirations of Māori children with asthma.

Health Organisations (Meso Level) Health organisations need to work collaboratively with the populations they serve to identify and develop high-quality resources for children with asthma and to incorporate these into their educational strategies (particularly interactive and audio-visual resources, along with resources designed specifically to address the needs of Māori children). There is a need for education support tools for asthma to monitor the longitudinal provision of asthma care for Māori children and their whānau. Innovative, flexible and community-based asthma educational approaches need to be adopted to better meet the needs of Māori whānau. Recommendations 

• Work collaboratively with children with asthma to develop high-quality asthma resources for a range of ages and levels of asthma knowledge – particularly interactive and/or audio-visual resources, and resources specifically for Māori children.
• Develop longitudinal asthma education support and monitoring tools for patients/whānau. •
• Develop community-based, health literacy asthma support and education sessions that are culturally appropriate for Māori children and whānau.

Health Professionals (Micro Level) Teaching strategies employed by health professionals need to engage the patient and their whānau according to the specific needs and learning preferences of the family. They need to empower and activate patients to be able to take an active role in their own health care, and provide them with the tools to do this. This involves a requirement for specific training in health literacy-based education techniques, chronic disease management education strategies and cultural responsiveness. High-quality resources utilising a range of media need to be available which can support health professional-led engagements, and reinforce key messages for all ages and levels of understanding. Recommendations 

• Ensure all consultations are seen as opportunities to build health literacy, promote patient activation and support asthma self-management.
• Undertake specific training in the use of health literacy-based education techniques.
• Regularly incorporate a variety of learning media (e.g. interactive/tactile/audio-visual asthma resources) to support asthma education.
• Continue to develop cultural competency skills for engaging with Māori children and whānau. 

Whakawhanake (Workforce Development)

Building Relationships and Working Together to Support Māori Children with Asthma  Health System (Macro Level) In order to meet the on-going needs of Māori children with asthma (and other chronic diseases) the health system must develop a range of health-care personnel equipped to meet the specific challenges of providing chronic disease management. This must include coordinated development of inter-professional and team-care strategies that clarify roles and expand scopes of practice to provide integrated support for chronic disease management. Such inter-professional approaches need to include recognition of the roles that asthma educators, pharmacists, non-professional health-care workers, community organisation staff and trained volunteers can have in supporting the provision of holistic integrated asthma care. Recommendations

• Explore models of integrated care to promote closer working relationships between health professionals, and enhanced inter-professional learning opportunities.
• Improve role delineation for health professional groups in the chronic disease management of asthma in support of a multidisciplinary support approach.
• Formalise and expand scopes of practice for other health-worker roles (such as asthma educators, pharmacists and community health workers) to support the provision of holistic integrated asthma care.

Health Organisations (Meso Level) Effective asthma care requires a team approach. Health organisations need to develop and adopt policies and procedures that encourage better interdisciplinary harmonisation. This also involves a need for improved links with other providers within and beyond the health sector to address the dynamic and holistic well-being of Māori children with asthma. Health organisations must also mandate the inclusion of cultural competency across the organisation to ensure all staff understand and practise effective ways of engaging with Māori in clinical settings. Recommendations

• Provide policies and procedures for cross-disciplinary harmonisation of asthma management and education.
• Develop collaborations and provider networks (e.g. within and between DHBs, PHOs, Māori providers, NGOs and other community agencies) to support implementation of best practice for asthma and chronic care management approaches.
• Mandate the inclusion of cultural competency across the organisation to ensure all staff understand effective ways of engaging with Māori in clinical settings.

Health Professionals (Micro Level) Effective asthma management requires the establishment of long-term trusted relationships with patients in order to build a shared understanding of values, priorities and management strategies. No individual health professional has sufficient capacity or capability to be the sole provider of asthma management support. Health professionals need to establish collaborative relationships with their professional colleagues and community partner organisations to develop a shared understanding of the responsibilities for asthma education in order to ensure the education is consistent, timely and comprehensive. Recommendations • Maintain continuous high-quality relationships to build long-term trust relationships with patients. • Routinely explore the manageability of asthma management plans and utilise relevant support services to address identified barriers. • Develop collaborative partnerships with Māori health providers, Whānau Ora providers and other community-based organisations in support of asthma care for Māori children.

Te Anga (Model of Care)

Health Care Services That Meet the Health Needs of Māori Health System (Macro Level) Critically, the health system must recognise that the current system based around reactive, episodic care is failing Māori children with asthma, and is being manifested in significant inequalities in asthma health outcomes. The health system urgently needs to implement a chronic care management model to provide proactive, longitudinal, patient/whānau-centred, culturally responsive care to Māori children with asthma within a multidisciplinary team environment. The health system must also ensure services for asthma are integrated to provide shared information across settings, providers and time – minimising fragmentation, service delivery gaps and patient frustration. Integration must also include extending policies that support patient-centred health care, prioritise health promotion, engender patient activation and encourage self- management. Recommendations

• Implement a systematic chronic care management model for asthma care to provide long-term, proactive, whānau-centred multidisciplinary support.
• Develop and support shared information platforms allowing integration of asthma support and monitoring between providers.
• Align provider incentives so that proactive chronic disease management efforts are rewarded.
• Allow flexibility within Care Plus eligibility criteria to include asthma as a single qualifying condition.
• Fund a free annual asthma review in primary care.

Health Organisations (Meso Level) Health Organisations need to adopt a proactive chronic care management approach to all aspects of asthma support within organisational policies and procedures. Health literacy policies and procedures also need to be integrated into the organisational culture so that every asthma interaction aligns with effective learning outcomes. These organisations need to contribute to generating evidence that informs community initiatives that activate whānau and build asthma self-management capabilities, and incorporate mechanisms to support holistic well-being for Māori children with asthma. Recommendations

• Develop and implement health literacy policies and procedures for staff.
• Adopt a proactive chronic care management approach to all aspects of asthma support within organisational policies and procedures.
• Incorporate a philosophy of culturally competent holistic care into organisational policies and individual consultations with Māori.
• Contribute to the generation of evidence-informing initiatives to activate whānau and build asthma self-management capabilities.

Health Professionals (Micro Level) Māori children with asthma face significant barriers to effective asthma management. Although many of these barriers have their origins in inequalities of the determinants of health, it is imperative that health professionals recognise the contribution of barriers within health care that contribute to sub-optimal outcomes. Health professionals need to ensure that all their patients are receiving eligible supports or benefits, and that accessibility or affordability are not preventing optimal health outcomes. Recommendations

• Routinely incorporate chronic care management approaches into asthma consultations, including using proactive strategies to provide preventive advice when patients are well.
• Ensure follow-up visits are provided after acute presentations/hospitalisation.
• Provide access to asthma self-management support after-hours via the internet or telephone.
• Ensure all children with asthma are offered support packages when eligible (e.g. Care Plus, Disability Allowance, Whānau Ora services).

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