New Zealand has one of the highest rates of asthma in the world. Māori, in particular Māori tamariki, bear a large part of this burden, with double the rate of hospitalisations for asthma than non-Māori. Registered nurse and Māori health researcher at the University of Otago, Wellington, Mrs Bernadette Jones (Ngāti Apa Ngā Wairiki), has dedicated much of her research career to finding practical solutions to help address these ethnic inequalities.
Bernadette recently led a HRC-funded study that explored the practical issues Māori tamariki and their families face when trying to manage asthma on a day-to-day basis. The Pukapuka Hauora (Healthy Lungs) Asthma Study, which was published in the journal BMC Public Health, recruited 32 Māori families with experiences of childhood asthma from the Greater Wellington region and followed up with them four times during the course of a year. All of the families completed the study – an impressive retention rate of 100 per cent.
“When we first came to look at the issue of asthma, I was concerned that Māori were underrepresented as research participants. The rate of participation in research should reflect the significant impact that asthma has on the Māori community,” says Bernadette.
Crucial to the success of this study was the use of a Kaupapa Māori (Māori way) research approach. Bernadette says the research process wasn’t prescriptive. Instead, whānau could choose how the data was collected. A variety of research tools were used, including in-depth interviews, drawings, videos, and individual or whānau-focused groups. Many participants weren’t comfortable in a hospital setting, so they were offered a selection of venues to choose from – for example, some preferred their own homes, while others chose their marae.
“Professor Hirini Moko Mead wrote in his book Tikanga Māori: Living by Māori Values that the ‘Process, procedures and consultation need to be correct so that in the end everyone who is connected to the research project is enriched, empowered and enlightened and glad to have been a part of it.’ It’s important that participants are happy to be part of the research process. We went back to interview whānau four times, which meant we got to know how they wanted researchers to interact with them to develop a more partnership-based relationship.”
Before the research began, Bernadette also went about building a close relationship with the Māori community in the study region. She went on community visits with Anne Webster, one of the Māori asthma nurses at the Tu Kotahi Māori Asthma Trust, the local Māori health provider in Lower Hutt, to see how they related to whānau. During the course of the study, Tu Kotahi staff also helped with medical referrals for participants identified as having specific medical needs.
“Many participants and whānau weren’t confident that they were doing a good job of managing their children’s asthma. This research was a good opportunity to validate what they were doing. It’s hard to manage a chronic disease like asthma when you don’t have a lot of support and guidance,” says Bernadette.
The study team also asked participants and whānau for their views on the Kaupapa Māori approach.
“It was lovely at the end of the study to have some of the mums say ‘I’m going to miss you. When is the next study?’ Another mum said she had learned about best practice for asthma management through the questions that we had asked her, and she was passing that knowledge on to other mums she knew.”
Bernadette says there’s a lot of research being done in this country which involves Māori, but it needs to be done in a way that will protect and return benefits to Māori.
“I think the methodology and methods of this study set a benchmark for conducting collaborative, Māori health research that can be used to inform intervention strategies that facilitate Māori health and wellness.”
In July Bernadette will begin another HRC-funded study, this time focused on using a Kaupapa Māori approach to develop strategies that will help improve asthma management in New Zealand schools.
“The ways in which schools support a child with asthma can significantly affect that child’s overall asthma control and ability to learn. We hope to develop an evidence-based asthma toolkit for primary schools that will reduce asthma disparities and act as a template for managing other chronic conditions in schools.”