Improving outcomes from pain management programmes in Aotearoa New Zealand: listening to the voices of Māori

Participants

The inclusion criteria for participants were attendance at the 3-week pain management programme within the last 5 years, self-identification as Māori, and aged over 18 years. Recruitment was assisted by Te Kāhui Māori, who made the initial approach to potential participants through a phone call to provide information on the study and its kaupapa (purpose, ideology). Six people (aged 55–70, five women, one man) were informed about the study and all agreed to participate. All participants had attended the programme through a government-funded referral.

Ethical approval was obtained through the Auckland University of Technology Ethics Committee (#22-186) with locality approval from the clinical centre. All participants provided verbal and written consent.

Procedure

Individual semi-structured interviews were held between the participants and the lead researcher at a location of the participant’s choosing. Participants were invited to bring whānau (extended family members) or support people to the interview; one of the participants was supported by their partner who also contributed to the interview. Cultural rituals were incorporated into the interview process (Lacey et al., 2011). Interviews were opened and closed with karakia (prayer) and kai (food) was provided by the researcher. Whakawhanaungatanga (relationship building) was instigated through initial phone calls between the lead researcher and the participants to establish connections, and general conversation at the beginning of the interview. Following the general conversation, the interviews ranged from 15 to 60 min in duration. One participant provided an additional audio recording to the lead researcher that contained further thoughts she had following the completion of her interview. All interviews were audio recorded and transcribed verbatim, including the additional recording.

Data analysis

Reflexive thematic analysis was used to analyse the interview data as it is effective for constructing themes and patterns in large data sets (Braun & Clarke, 2022). The analysis involved six iterative and recursive phases. In the first data familiarisation phase, all the transcripts were read by all of the authors. The second phase consisted of coding the transcripts, which was undertaken by three of the authors. From these codes, prototype themes were constructed independently by the three authors and then discussed together as a whole team, which revealed considerable overlap of the prototype themes. During these discussions, the lead author provided a holistic interpretation of the interviews in the greater context of the participants’ lives, enabling meaningful discussion around the participants’ stories. The fourth phase consisted of reviewing and further developing and discussing the themes as a team. During this phase, the prototype themes were presented to Te Kāhui Māori at a face-to-face hui (meeting) to obtain their feedback. Participants were also sent a written summary of the findings, recommendations, and future plans. Following these steps, there was further refining and naming of the themes before the final phase of writing up the findings and selecting relevant quotes. Participants were given the opportunity to come up with their own pseudonym for use in published material.

Lost and alienated

Participants gave numerous examples of where they had grappled to engage with mainstream health care services that were perceived to be uncaring, inaccessible, and fragmented. Unsurprisingly, most participants indicated that they were not coping with their pain prior to involvement in the programme. The profound impact of pain was evident in descriptions of the “mental anguish” (Copper, 70, female) of pain and that “all I could do was cry” (Puretu, female, 69). This global distress was particularly evident for Rongoā:

I was depressed, I was overweight. I didn’t know whether I was coming or going. My medication was all to hell. My job kept me sane. I wasn’t suicidal, but I was bloody near it. (Rongoā, female, 69)

Previous negative experiences with the health care system seemed to contribute to the overwhelming nature of pain. Most participants recounted that medical staff, particularly specialists, had been unable to form meaningful relationships with them. Participants reported that they often saw multiple doctors and felt the appointments were rushed, meaning there was no time for introductions or to get to know each other. One participant commented that their specialist “never really talked to me” and that “He didn’t even introduce himself. Just, hello, I’ve looked at your notes. You need to go home and meditate” (Rongoā, female, 69). Some participants also felt they did not get sufficient information about their condition or received different opinions from different doctors. Others expressed experiences of racism. The partner of Copper, who attended as a support person, described the apparent imposition of racialised assumptions:

They’d say to [partner], “do you drink?” And she’d go, “no.” And then they’d wait until she wasn’t there and then they’d go to me, “oh, how much does she drink?” Well, no, she doesn’t. She’s not a drinker. I felt sometimes that was quite racist. It was almost as if, “you are Māori so you must drink a lot.” That really annoyed me. (partner of Copper)

Others felt that being Māori made it difficult to engage with and navigate through the health system. One participant described, “I was lost, and I was lost in a system at the hospital that didn’t care” (Rongoā, female, 69). Participants expressed frustration at cancelled appointments, chasing referrals, and a lack of knowledge about the pain management programme at the clinic. Some of the participants lived in difficult social circumstances that made accessing health care challenging, such as unreliable mobile coverage, and most were reliant on whānau for transport and support.

Manaakitanga created a supportive environment

This theme centred on the perceptions of the caring and supportive nature of staff at the clinic, and the contrast this made with the previous negative experiences of mainstream health care. At the clinic, staff were viewed as caring, supportive, patient, and reassuring. Participants highly valued these characteristics and most expressed multiple positive comments about the staff. As one participant stated, “I can’t compliment them enough. I really can’t compliment them enough” (Mrs W, female, 55). It appeared that the extra time with clinicians on the programme contributed to positive interactions:

This little man, my specialist, that had a little bow tie and he was so lovely because he was so excited to see you and he made you so welcome and you weren’t rushed out of his office. He talked to you like he wanted to help you and he talked to you like you were a person. (Rongoā, female, 69)

The extended time and the small class size appeared to facilitate the formation of meaningful relationships with clinicians. However, it was not only the clinical staff who made a difference. Participants expressed that being made to feel welcome was highly valued, no matter who that came from. Rongoā (female, 69) indicated that “It was about who was there at the door to greet me when I went in and to say goodbye to me when I left.” These efforts to welcome and support participants meant they felt like they were looked after and were reassured there would always be someone there for them:

Oh, it was just the way that they talked to you. They didn’t talk down to you, you know, and if you had any problems, you knew you could go to them. You know, so they were good. (Mrs P, female, 65)

These experiences highlight the importance participants placed on manaakitanga (kindness, respect, care). This clearly contrasted with previous interactions with clinicians the participants had experienced. The ability to form a connection with staff was interpreted positively by the participants and made it feel like they were being treated as a person, while the support and reassurance provided by staff seemed to make it a safe environment where the participants could challenge themselves and participate more fully in the programme.

Education enables mana āhua ake (personal autonomy)

This theme highlights the reported value of the educational aspects of the programme and how the increased knowledge enabled participants to accept and self-manage their pain better. The ability to makes one’s own choices facilitates personal autonomy and the maintenance of unique identity. Despite many previous health care encounters, some participants expressed limited knowledge about their condition or treatment options prior to attending the programme. By contrast, participants spoke positively about the education component of the programme. The information presented was described as helpful for understanding how their body works and their condition, as well as providing a better idea of ways to manage their pain and how treatments work. For example, Rongoā (female, 69) stated, “That was the beginning of me starting to realise that I wasn’t going crazy, that there was something wrong, and that they could do something about it.” This quote highlights the inter-relationship between participants’ mental well-being and appropriately provided information about their condition. Participants appeared to value the education because of the way that it was delivered. They indicated that information was simple and presented in a format that was understandable and made sense for them:

People on the education programmes, they simplified it so that you can understand. Because we were all old, you know, and none of us know these big words, but they simplified them so that it was understandable. Everything was beautiful. I understood everything they said. (Mrs W, female 55)

The above quote draws attention to the importance of health professionals packaging education appropriately for specific audiences. The information provided to participants enabled them to identify what brought on their pain and gave them other options for management. This increased knowledge was equated with power, and it appeared to facilitate participants’ acceptance of their pain and their ability to make informed choices about how they managed it. Copper (female, 70) indicated that, “If I’ve got the tools to deal with it, I can do something about it” while Mrs W (female, 55) stated, “It’s amazing what you can do when you’re taught.” Being able to self-manage their pain gave the participants a greater sense of control and meant they were less reliant on medication for pain management:

At the beginning of it, I was like I need something, I haven’t got anything. I have to have drugs. It’s horrible. But now I understand at this end that I’ve got that as a backup . . . . Being in control of what I can do is really a big thing. (Copper, female, 70)

The participant went on to detail the nuanced way they were able to investigate their pain experiences, analysing the antecedents and quality of the pain and exemplifying of some of the transformative experiences participants had as part of participating in the programme (Copper, female, 70). Most participants clearly expressed a desire to self-manage their condition and make their own choices about how they managed it, and being in control was highly valued.

In conjunction with the increase in knowledge the programme provided, all participants indicated that the right attitude was needed to be successful and to gain benefit from the programme. Determination, perseverance, and self-belief were all described as requirements during the programme and afterwards. This is evident in Rongoā’s (female, 69) kōrero (talk):

They have physiotherapists and guys there that want to spend the time with you. So, if you want some goodness out of what they’re giving you, then you’ve got to be prepared to be there 150%. Doesn’t matter how hard it is and how sore it is, because at the end of it, you feel so much better.

The determination of some participants to complete the programme appeared to be motivated by their own goals, such as, “I’ve got a new granddaughter and I want to see her grow up and get married. That’s a driver for me as my grandchildren grow up” (Tane, male, 67). This committed attitude was also evident in that most participants said that they kept up some of the programme activities at home.

Whanaungatanga is valued

This theme provides evidence that whanaungatanga with other patients and with the clinic were also highly valued. Participation on the programme made the participants feel like they were part of something, and they benefitted from the support of and interaction with others. This beneficial social aspect is evident in Mrs W’s (female, 55) statement:

I think it was more around being with other people . . . . Mixing and mingling with others, the social aspect of things. There was about four of us in our group that were all on our own, that were quite lonely. So when we got together with each other, we would talk as if there was no tomorrow. It’s only because you have no one else to talk to you at home.

The small group format seemed to afford meaningful social interaction that was still considered to be on a personal level. The participants clearly valued having other people with similar chronic pain conditions and life experiences to talk to. The importance of social connection on the programme was evident in Copper’s (female, 70) comment that, “When you get home, you get out of that little supported bubble environment.” The relationships formed on the programme therefore played a supportive role rather than just providing an avenue for social interaction.

The participants additionally appeared to value their relationship with the clinic. When questioned about whether they would like to return to the clinic to repeat the programme or do a refresher course, almost all participants responded positively, “Oh yes, of course I do. Yes, I do” (Puretu, female, 69). This desire, for some, appeared to be motivated by maintaining a connection with the clinic and connecting with staff again. Copper (female, 70) continued her relationship with the clinic through regular phone calls to ensure that she stayed within their system, and made a further suggestion of staging the programme over time (rather than a block course) to provide ongoing contact. Therefore, the social interaction with others and connections that were formed with the clinic were highly valued.

Where is the tikanga?

This theme focused on the participants’ desire to have more te ao Māori (Māori worldview) content within the programme. When probed, almost all participants commented about an absence of tikanga and te ao Māori within the programme. The significant gaps identified included the lack of te reo Māori (Māori language), karakia, rongoā Māori, Māori understandings of health, and Māori staff. These omissions meant participants viewed the programme as Western-oriented: “It was caringly done, but it was very medically focused” (Copper, female, 70). Some participants expressed surprise at the lack of simple protocols like karakia, and they spoke of different solutions they had used to incorporate their own karakia within the day while at the clinic. The following participant emphasised the importance of what karakia signified:

And so, when you’re eating kai, you know there’s a karakia for kai. So you’re brought down into that space, or brought into that space. You are there for specific reasons. So, your kai stays there. You go out and do your mahi [work]. You karakia at the start you karakia to finish, and it gets you into that mindset for the rest of your healing. And at the end of it, even if you are swimming or whatever, it just means that you are fully rounded and supported, rather than just doing a programme as you’re going through. (Copper, female, 70)

Thus, the absence of tikanga impacted the participants’ ability to fully immerse in the programme in a culturally supported way. A couple of participants noted a preference for inclusion of rongoā Māori treatment rather than Western equivalents, with Rongoā (female, 69) explaining, “I would’ve liked to have had massages, but I would’ve liked to have gone to have a proper mirimiri [traditional Māori massage] where there was karakia.” Some participants commented that more Māori staff or the presence of a kaumātua (Māori elder) would have facilitated more kōrero: “But if I was talking to Māori, I’d be more open with what I want to talk about” (Mrs W, female, 55) and “There weren’t any Māori staff. And so, when you are feeling like you don’t want to talk, it’s not because you don’t want to talk. It’s because you’re not that way inclined to tell everyone everything” (Copper, female, 70).

It was apparent that some of the participants limited both their clinical and casual conversations while on the programme. Participants identified that stronger connections would have been generated if there were Māori staff as relationships of trust would have more readily been fostered, leading to more open dialogue.

The participants also expressed a need for more genuine engaged kaupapa and described a tokenistic inclusion of a Māori health model within the programme. The partner of one of the participants outlined a process of converting the programme learnings into a Māori framework to implement the knowledge, and several participants identified their own interpretations of their pain and preferences for treatments that do not align with biomedical models. The desire for a more holistic programme that incorporated te ao Māori was evident:

All of those intricacies come into your way of healing and being. All of that sort of thing. So, mindfulness, you know, there’s no relatability to spirituality, wairua [spirit], to how are you feeling? How’s your wairua? I think if that would’ve been there, it would’ve meant you’re not so clinically based. You are more holistically based. (Copper, female, 70)

Hence, while the programme was universally spoken of positively, the participants clearly noted there were aspects of te ao Māori that were missing that would have made the programme align better with their worldview. In support of this immersive approach, almost all of the participants expressed support for the potential of a Māori-only programme. Participants spoke of the benefits of shared understandings between Māori and the incorporation of te ao Māori, “But for some who are extremely shy and who only have their whānau who are Māori, I think that the specific Māori flavour, or whatever they call it, should be addressed” (Rongoā, female, 69).

While the participants found the programme enjoyable and beneficial, it did not appear to meet the cultural needs for many of them and they perceived there would have been further benefits if the programme had aligned more with te ao Māori.

Recommendations for clinical practice

Our recommendations for the clinical centre are derived from the themes just presented, encompassing concepts of manaakitanga, whanaungatanga, mana āhua ake, and tikanga. The recommendations include those that are directed at the individual clinician level that could be implemented fairly quickly, followed by those at a more programme and clinic level. Feedback from Te Kāhui Māori has also been incorporated within the suggestions (Table 1).

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Table 1.

Recommendations for clinical practice separated into those that can be implemented in the short- and long-term.

Short-term	Long-term
Treat patients with manaakitanga (care, respect)	Incorporate rongoā Māori (traditional Māori (Indigenous peoples of New Zealand) treatment)
Take an interest in a patient’s whakapapa (genealogy) and share aspects of yourself	Include more Māori staff
Be accepting of patients’ knowledge and beliefs about pain	Develop a programme for Māori patients only
Provide a cultural navigator for each intake	Provide improved transport that works with the programme hours
Incorporate elements of Te Whare Tapa Whā (a Māori model of health and well-being) into the programme, for example, education and discussions around social and spiritual well-being	Provide onsite accommodation on an equity basis
Include pōwhiri (welcome ceremony), te reo Māori (Māori language), karakia (prayer), waiata (songs), and traditional stories or history relating to the local area	Deliver the programme, or parts of it, in the community
Provide cultural competency training for staff	Have ongoing communication with patients after completion of the programme
Include sessions on health system navigation	Establish networks or support groups of former patients

Manaakitanga had a positive impact, and the clinic currently is doing this well. Health care providers should treat people with respect, kindness, generosity, empathy, and compassion. They should make time to establish relationships, including taking genuine interest in the whakapapa (genealogy) of the person and sharing relevant aspects of themselves. Health care providers should be non-judgemental and accepting of patients’ knowledge and beliefs about their pain, and provide encouragement and support throughout clinical interactions. These factors are likely to support whakawhanaungatanga and enhance mana (prestige, power; Kirkcaldy, 2023).

The pain management programme should provide education about and overtly incorporate Te Whare Tapa Whā (name of a Māori model of health and well-being; Durie, 1985) and rongoā Māori as well as Western views of health and treatments. Incorporation of these models and practices would enable patients more choice about treatments and options that align with their cultural strengths. Ideally, this would be delivered in a way that enables multiple concepts or understandings of pain to be possible to enable patients to make choices and have an active involvement in their health care (Moseley et al., 2023). Whare Tapa Whā (Durie, 1985) is simple and commonly recognised in Aotearoa New Zealand, and its holistic view of well-being is common across many non-Western cultures (Lovering, 2012; Mao et al., 2021; Pandav & Kumar, 2018; Pulotu-Endemann, 2001). Rongoā Māori is an integrated treatment approach that incorporates elements of wairua, tinana (body), whenua (land), tikanga, rākau (plants), and whānau (Marques et al., 2021). The current clinic is an ideal space for on-site incorporation of rongoā Māori given its location and resources. For programmes in other locations, establishing relationships with local providers may be a more appropriate option. Incorporation of tikanga is also paramount, including use of pōwhiri (welcome ceremony), te reo Māori, karakia, and waiata (songs). In addition, inclusion of the history or traditional stories about the local area, for example, in relation to the natural resources that are used at the current clinic, would provide greater understanding of the meaning and importance of te taiao (the environment) where the programme is situated.

We think it would be important to give people the choice of a programme that is only for Māori. While the programme may still be centred in a Western context, having exclusive Māori participation would likely promote stronger connections between patients and a safer cultural environment. To facilitate the implementation of these suggestions, we additionally recommend that staff undertake cultural competency training. Together, these factors would more comprehensively address all elements of health for Māori and promote a better environment for healing and restoring well-being (Kirkcaldy, 2023).

We also recommend some structural changes to how the programme is delivered. Given the participants’ previous experiences of feeling lost and alienated in other health care settings, cultural navigators for each intake and the addition of more Māori staff is suggested. These do not need to be clinical staff, but someone for patients to connect with more easily and meaningfully. In addition, the incorporation of advocates for or sessions on health system navigation may be useful. As many of the participants were reliant on whānau to attend the programme and other health care appointments, we recommend improved access to transport for patients or providing more equitable access to the onsite accommodation available. The clinic could additionally consider ways the programme content could be delivered in the community at locations that are more familiar and accessible to whānau Māori. Finally, we recommend that the programme incorporates ongoing sessions and communication with patients to maintain the relationship with the clinic and with others who have attended the programme. Connections with other relevant groups in the local community could also be promoted. Maintaining such connections is an important aspect of whanaungatanga that shows the ongoing nature of the relationship.

Strengths and limitations

The project was undertaken in collaboration with Te Kāhui Māori and with a clinical centre the authors had a long-standing relationship with. This facilitated the recruitment of participants and ensured the project remained beneficial to Māori and with Māori oversight. There were also some limitations. As a small project, we included only six participants. However, the depth of the interviews enabled meaningful themes to be constructed. Three of the authors are Pākehā and a Western approach to methodology, methods, analysis, and write-up was undertaken. Thus, the project is Māori-centred rather than a kaupapa Māori (Māori approach) methodology. However, we have aimed to incorporate as many principles of kaupapa Māori into the project as possible. This includes producing a tangible outcome for the clinic and whānau Māori, maintenance of data sovereignty with Te Kāhui Māori Committee, and a commitment to an ongoing relationship with the clinic that will aim to further promote improved outcomes for Māori with chronic pain in the local community through continuing research partnerships.