This was a longitudinal, qualitative, exploratory field study utilising a Kaupapa Māori Research paradigm and Interpretive Phenomenological Analysis (IPA) methodology.
Kaupapa Māori Research
A Kaupapa Māori Research (KMR) paradigm is an emancipatory, Indigenous research paradigm connected to Māori philosophy and principles [20, 27, 28]. KMR takes for granted the validity and legitimacy of Māori and the importance of Māori language and culture with a focus on autonomy over Māori health and well-being . KMR differs from the four dominant paradigms described by Guba and Lincoln  in that ‘relationality’ is at the heart of KMR, as it is in other Indigenous research paradigms . In other words, the core of the Māori world rests on genealogical relationships (whakapapa) and Māori research is accountable to these relationships. Knowledge, therefore, is for the good of the people rather than individual gain .
What KMR has in common with other, transformative research approaches is that KMR is also about making a positive difference for Māori . In health, for example, Community-Based Participatory Research (CBPR) sets out to reduce health disparities through a commitment to university-community research collaborations . A similar agenda is reflected in the research on asthma described here. The research team for the present project consisted of university and community-based Māori and non-Māori researchers, with a community-based Māori Health Provider, a non-government organisation (NGO). Our community research partner, Tu Kotahi Māori Asthma Trust (Tu Kotahi), provides culturally appropriate asthma services to their community utilising a holistic Māori model of health . Senior Tu Kotahi staff were involved throughout all phases of this research.
KMR employs a large variety of traditional and contemporary, qualitative and quantitative research methods . These are drawn upon appropriately and creatively so that the methods, and often their methodological traditions, are in alignment with KMR [35, 36]. Each of the methods used in this study was subjected to scrutiny to ensure their compatibility with KMR, including their ability to facilitate Māori families’ sharing of their experiences in a culturally appropriate and safe way .
Interpretive Phenomenological Analysis
Interpretive Phenomenological Analysis (IPA) came to prominence in the mid-1990s as a qualitative research approach within health psychology . By taking a hermeneutic approach to studying how people experience and interpret an event or phenomenon, IPA aims to explore and learn about participants’ worlds in depth . IPA therefore allows researchers to develop an analytical interpretation of participants’ accounts that are grounded in (but may go beyond) the participants’ own sense-making . A key component of this is the acknowledgement of the importance of participants’ social and cultural context .
While IPA had not previously been used in research with Māori, phenomenology (on which IPA is based)  has been used successfully with other indigenous peoples in the USA and Canada . Phenomenology aligns with holistic Indigenous cultural values; as a research method it elicits implicit meanings of indigenous culture and has assisted with recording the essence of experiences of indigenous societies .
Our motivation to use IPA as a research method was its potential acceptability to Māori research participants, and its ability to elicit and interpret Māori experiences. Our preliminary interrogation of the method pointed to its capacity to privilege Māori interpretations of whānau (family), community and Iwi (tribal) values, thereby confirming our impression that IPA would enable us to elicit, interpret and appropriately represent Māori experiences of parenting a child with asthma .
An additional component to the research design was the longitudinal nature of the study, involving four quarterly visits over the course of a year. Qualitative Longitudinal Research (QLLR) is predicated on the investigation and interpretation of change over time and process in social contexts . This QLLR ‘panel study’ design was necessitated to capture the seasonal variations experienced in environmental factors, asthma triggers, control and health-related experiences [Ibid.]. However it also served a dual functionality insofar as working with families over this extended time course was compatible with our KMR approach, and enabled the building of relationships and trust.
Ethical and Māori community approval
This project underwent a two-stage review process including independent peer review followed by expert committee review prior to being awarded funding from The Health Research Council of NZ. Formal ethics approval to conduct this study was obtained from the NZ Central Regional Ethics Committee (CEN/07/07/048).
Kaumātua and kuia (tribal elders) from Tu Kotahi were also consulted for advice from the inception of this study and permission was sought to conduct this research in partnership with them and their community. In keeping with traditional Māori protocols the launch of the project included a kaumātua blessing and introduction to the community at a ceremony held at Kokiri Marae (community meeting place), Wellington.
To ensure good clinical practice the researcher took contact details of Māori Health Advocates to all the interviews in order to provide external support for any participant who became distressed whilst discussing their experiences and requested further support. Some participants were referred to health professionals when required for on-going clinical expertise. In addition to participants the researcher’s wellbeing was ensured by following good practice in terms of conducting home based interviews: a mobile phone was carried to home visits and colleagues were informed of the start time, the venue and expected time of completion.
Sampling and recruitment
Participants (index children and their families) were recruited from amongst primary school aged children (usually 5 – 12 years old) of Māori ethnicity (by parental report), living in the Wellington region of NZ - a conurbation of the capital city, Wellington, and the cities of Lower Hutt, Upper Hutt, and Porirua.
We aimed to recruit 32 participants to the study. A retention rate of 80% over the twelve month follow-up was estimated based on other local experience with longitudinal, community-based trials, to ensure 24 families completed the study .
A purposive sampling framework was employed to capture a diversity of children, in terms of parental socio-economic status (SES) and the presence or absence of a severe exacerbation within the past three years. A questionnaire-based definition of ‘current asthma’ was used in order to facilitate recruitment and avoid any necessity for participants to undergo eligibility testing (e.g. spirometry). ‘Current asthma’ was defined per our previous studies [45, 46] as: a prior history of a doctor diagnosis of asthma, plus either inhaler use in the last 12-months or the presence of parent-reported wheeze in the last 12-months, using standardised International Study of Asthma and Allergies in Childhood (ISAAC) questions . Severe exacerbations were defined as those requiring hospital admission or emergency department presentation . Similarly we chose ‘Community Services Card’ (CSC) eligibility as a proxy measure of socio-economic status. This income-tested card provides subsidised health care and medication charges for low to moderate income earners . CSC status has been shown to be associated with increased health need, as well as relative economic disadvantage .
Previous research experience within our team demonstrated that Māori participants prefer any initial contact to be in person ‘face-to-face’ (kanohi-ki-te-kanohi) , and that a ‘snowball’ effect would occur once the community learns about the study . We designed the recruitment strategy in partnership with Tu Kotahi who have over two decades experience working with this Māori community. This involved the Tu Kotahi community-based Māori asthma nurses verbally approaching potential participants from their case list and using a standardised statement to inform potential participants about the study and ask for permission for a researcher to contact them by phone. A Māori researcher (BJ) then met with participants to give them a full verbal explanation of the study, provide them with an information sheet, and obtain written consent.
This section describes the ‘tools’ used with participants, with the following section, ‘procedure’, describing how they were used during the interviews.
The tools or methods utilised aimed for compatibility with Māori oral and visual traditions. Some of these methods were trialled during earlier pilot studies and found to be culturally acceptable [51, 53]. The methods used were: semi-structured interviews, Photovoice, lung drawings, verbal asthma history, and an asthma risk-factor questionnaire.
The interview schedule was developed from the semi-structured questions previously tested in our pilot study . The questions were clear and constructed in a format familiar to the sample population . These questions were sufficiently broad in nature to capture individual experiences while also allowing comparisons to be made between participants during the analysis phase . The primary participant was one or both parents/guardians/caregivers of the index child; however the option was available for children and extended family members to participate in a family focus group interview. The interviews were designed to be conducted at three monthly intervals during the year in order to capture periods of altering asthma symptoms and related experiences throughout the different seasons.
Parents and children were asked to use Photovoice  as a method of data collection. This technique can add validity and reliability to data collection while ‘enlarging’ the remembering . The inclusion of Photovoice and lung drawings (see below) had a dual purpose as these methods were designed to be both culturally appropriate and child-friendly .
For Photovoice we gave a disposable camera to participants who were asked to take photographs of whatever they felt was relevant to their experience of managing asthma. It was completely up to the participants to decide when and what photographs to take instead of being passive recipients of images taken by others . Using images in this way can connect a person to an experience visually, adding a different dimension and aiding both the participant and the researcher’s interpretation of a phenomenon. Photovoice use has been documented in a number of health research projects including chronic illness [59, 60], although less frequently with children [61, 62].
From a cultural perspective the use of images has been described as “bridges between worlds that are more culturally distinct”  and was found acceptable by ethnic minorities as a means of establishing a deeper understanding of cultural and social experiences . Photovoice has been used successfully with Indigenous participants helping to make visible their experiences and promote their needs in the healthcare setting . In the NZ context it has been used effectively with Māori youth as an indigenous, community change initiative, addressing the complex issue of family violence [65, 66].
Children (and their parents) were asked if they would like to draw a picture of their lungs and describe visually what having asthma means to them. An outline of a child was provided with coloured pens and participants were asked to draw whatever visual representation they liked. Drawings can be well suited to research as an adjunct to other social research methods and both the drawing and the participants explanations provide another source of data that enriches the analysis . Drawings have also been commonly used in research with young children , as a different way of collecting information, especially for concepts or experiences that may be difficult to clearly articulate [69, 70].
Asthma history, risk-factor questionnaire and field diary
A researcher administered (BJ) asthma history and risk-factor questionnaire was undertaken with all participants. This was developed based on a number of sources which had been tested for validity and acceptability, including: the ISAAC Phase II questionnaire , the New Zealand Census 2006 , the ‘He Kainga Oranga Healthy Housing Programme’ , and the NZ Index of Socioeconomic Deprivation for Individuals (NZiDep) . The questions were selected to provide information on a range of topics including: asthma severity, asthma management, environmental risk factors, housing characteristics (ownership, crowding, heating, dampness etc.), and socio-economic indicators.
Observational data were also recorded by the interviewer (BJ) in the form of field diary notes depicting her observations and interpretations immediately following completion of the interviews, as well as reflections on the research process and any limitations and sentinel events. These reflections were linked with the responses during data analysis.
All interviews were audiotaped and transcribed verbatim. Interpreter services were available but not required as all participants spoke both English and Māori languages. All participants were assigned a pseudonym to ensure anonymity for the purposes of transcribing and dissemination of results. A printed transcript was available for all participants with the researcher giving a verbal summary at each subsequent visit. This summary led to further discussion and clarification until all participants were satisfied with the accuracy of the researcher’s interpretations.
In the first interview the researcher (BJ) focused on Whakawhanaungatanga or building the relationship with each family. Whakawhanaungatanga is a key concept for Māori and is embedded within the Māori way of conducting all aspects of interacting with people . While it is initiated at the start of any proceedings the relationship building continues throughout all encounters establishing a mutual trust and sharing of information . Once the researcher had developed a rapport she began the inquiry into understanding parents’ perspectives of caring for a child with asthma including both the challenges and the aspects of management that were useful.
A disposable camera was given to the parent(s) at the end of this first interview with the researcher providing detailed information including: camera use, consent, privacy issues and ownership of any photographs. Informed consent and ethical issues around the use of photographs are well documented by users of Photovoice particularly with vulnerable populations . Permission was sought from participants to use the images for academic publications, conferences and for teaching purposes with medical and nursing students. Parents and children selected photographs to be used for the research with one parent declining the use of Photovoice due to concerns regarding potential misuse of photographs on the internet.
Parents were encouraged to photograph anything that they felt was important about their child’s asthma management experience. While researchers avoided giving explicit instructions as to what photographs to take, a general explanation was given as to potential ways to use the camera to capture important experiences. For example, photographs of environmental factors that exacerbate the child’s asthma (pollen producing plants, mould on windows); management strategies that are used (dust reduction measures such as regular vacuuming, changing bed linen); use of medication (inhalers, spacers); visiting clinics; the people involved in helping the child to manage asthma etc. The researcher arranged to collect the camera and have the film developed in time for the photographs to be used for facilitating discussion at follow-up interviews.
The second interview began with Whakawhanaungatanga and then focused on themes emerging from the initial interview and events occurring during the past season. This was seen as an opportunity to revisit issues that had been discussed by parents at the first visit and to talk in-depth about aspects of asthma relevant to them. This process was repeated at each subsequent interview. The cameras from participants were collected at this visit, the film developed into both hard and digital copies. Parents were also offered the use of a second camera if they chose. Specific issues illustrated by other participants were discussed in general terms and parents asked to comment on whether these experiences were relevant to them. This was useful as a prompt to generate further in-depth discussion about whether they had similar or different experiences with these emerging issues.
A hard copy of the photographs was compiled into an album and given to participants at the third visit. Parents and children present were asked to comment on each photograph and its relationship to their asthma management. Questions at this interview focused on how the child’s asthma had been over the preceding season and highlighted some key topics discussed at the previous interview. Participants were asked what advice they might give to other parents who were newly faced with caring for a child with asthma. This was asked in an effort to understand their individual priorities or concerns when learning to manage asthma. Additionally at this interview both parents and children were given an outline figure of a child and asked to draw a representation of how they visualized their lungs.
The fourth and final interview discussed the asthma management over the preceding season including key issues talked about by the participant in the previous interview. This was another opportunity to feedback researcher analysis and interpretations and to ensure participants had the opportunity to edit or alter these interpretations ensuring the data were an accurate representation of what the participant had discussed throughout the study.
The asthma history and risk-factor data were collected by the researcher as part of a questionnaire which also served as a useful interview prompt that enabled participants to ask questions about asthma triggers, risk factors, and medications as well as for the purposes of characterising the participants in terms of asthma history. The semi-structured interview questions also included a focus on what immediate changes they would like to see in asthma management for their child. Finally feedback was sought regarding participant’s experience in the study, what (if anything) they liked most and least about the study, and whether they would prefer changes to the design and/or implementation of the research process.
The method being used for analysis was Interpretive Phenomenological Analysis (IPA), which has been described as an iterative and inductive cycle . This involves line-by-line analysis of each transcript, followed by the identification of emergent themes. A ‘dialogue’ between the researchers, the transcripts, and their theoretical knowledge of what these concerns might mean for participants leads in turn to the development of a more interpretive account. IPA acknowledges the researcher’s involvement in this analytical process, through which the researcher tries to make sense of the participant who in turn is trying to explain their own experiences . A summary of emergent themes was produced with transcript extracts or photographs that illustrated each theme. Incorporated within the layers of analysis are a number of other robust verification procedures that aid in establishing the trustworthiness of the analysis.
Multiple strategies were used to ensure data reliability and validity . Triangulation, a procedure by which researchers search for convergence among multiple and different sources of data in order to form themes or categories, was a central tool in this process .
Descriptive validity included the use of ‘investigator’, ‘method’, and ‘data’ triangulation processes . ‘Method triangulation’ was undertaken using the transcripts, Photovoice, and lung drawings as well as field notes to provide a rich collection of data . ‘Data triangulation’ occurred through the inclusion of other family members in many of the interviews, and at different times, and this offered additional perspectives on the issues discussed . ‘Investigator triangulation’ included discussion within the team about the themes and interpretation of explicit and implicit meanings. Collective agreement was then reached about the extent to which data represented themes and interpretations, and how these fitted within the broader cultural and political contexts .
Interpretive validity was ensured through participants being given a summary of the previous interview and having the opportunity to comment, give feedback, redirect any interpretations, or edit their transcripts. The draft findings were presented to participant families and community partner at the completion of the study (BJ,TI,CD) . Families were invited to have input into editing and shaping these results and ensuring they represented valid, accurate, meaningful interpretations of their experiences.
‘Extended fieldwork’ and ‘peer review’ were used as key strategies to contribute to the theoretical validity of the findings, so they would be both “credible and defensible” . Fieldwork began with an extensive consultative engagement process , and a deeper understanding of the issues, concerns, and context of the community was developed through the conduct of a theme development pilot . Greater insights were crystallised with prolonged involvement in the community over the course of the study, largely facilitated by the longitudinal nature of the participant interviews. Further contributing to the theoretical validity was our peer review process by which researchers independent from data gathering, who were experienced in IPA and/or asthma management, reviewed, discussed, and challenged the themes generated.