He mana tō te mātauranga – knowledge is power: a qualitative study of sexual and reproductive healthcare experiences of wāhine Māori

Participant consent

All participating wāhine consented to publication of anonymised data.

Being informed about contraceptive options is empowering

The wāhine reported wanting to be better informed about contraception. Pip (25) described how this impacted on her compliance with her prescribed contraceptive:

She [the GP] put me on the pill … I wasn’t really comfortable with it … I was more into the injection, but she never really talked me through my options properly … so when I went on the pill I didn’t take it, and I’m still not on any sort of contraception. (Pip, 25)

As Pip alludes to, there are a variety of contraceptive options available. The wāhine described being unaware of what options were available, which could impact on decision-making:

I think sometimes having better information and options. Instead of saying, “This is what will happen”, or “I think you should be on this.” Give me a couple of options. (Mere, 44)

Aroha (57) highlighted how this can be an issue, particularly for disadvantaged wāhine:

I’m still mind-blown about things that are out there that are helpful for us … what would you put us … low income? …there’s so much out there that can help us, that had we known, would make our lives easier. (Aroha, 57)

When the wāhine did not feel informed about contraceptive options or involved in the decision, it resulted in them discontinuing the contraceptives they had been prescribed. Mere (44) was without contraception at the time of her interview due to a consult in which she had not felt listened to, where she asked specifically for information about the Depo Provera (injectable contraceptive), but her doctor recommended the Jadelle (implantable rods):

I said well I’d prefer to go on the Depo, and he just printed me out the information about the rod, nothing about the Depo … I was pissed … I felt like I wasn’t listened to. (Mere, 44)

In contrast, Anahera (35) had a relationship with her GP that facilitated forthright and effective discussions about SRH:

Pretty straight up. Doesn’t beat around the bush. He’s just all out, with “well if you have unsafe sex you can get this and you can get that, and this is what it can do”. (Anahera, 35)

Because of Anahera’s longstanding relationship with her GP, she was happy to try different contraceptives, despite experiencing side effects. Marama (50) described how being forewarned by a trusted HCP can improve Mirena (intrauterine contraceptive device) adherence through initial bleeding disturbances:

I’d rather have a recognisable face say, “hey, it’s going to be hard for the first few months … this may happen”. (Marama, 50)

The wāhine who reported better interactions with their HCPs had accessed multiple types of contraception before they found the option that suited them. This contrasts with Pip and Mere’s experiences, where unilateral decision-making and lack of information sharing resulted in the wāhine having no contraceptive cover.

Informed consent is important

The wāhine stressed the importance of being adequately informed about medical and surgical procedures. Aroha (57) described not understanding why she was having repeated cervical exams:

They didn’t explain to me why they were doing what they were doing … it would have been nice to know. (Aroha, 57)

Age was a factor in informed consent. Whina (40) provided an example of inadequate consent, when she was subjected to an intra-vaginal ultrasound scan as a teenager to diagnose polycystic ovaries:

… they wanted to do an internal ultrasound, which … when you’re a teenager, I don’t think many of us would know what that means … and when they pulled out the … probe, and it was just quite terrifying … there was just no kind of explanation about what was going to happen, it just happened. And it just felt really intrusive. (Whina, 40)

Maia (39) recalled being taken to the GP by her mother for the Depo Provera as a teenager:

Mum took me in, when I was in my teens … I didn’t get any information about what it was … I wasn’t interested in sex … they never talked to me about the side effects or anything else, it was pretty much just … the doctor pulling part of my pants down, jabbing me and that was it. (Maia, 39)

Maia did not continue with the injections. Both Maia and Whina were poorly informed and inadequately consented to their procedures, which involved intrusively accessing private body parts. They were young and not yet sexually active. Lisa (44), in contrast, described her age as facilitating informed consent when accessing a termination at the age of 40:

Because I’m older, more articulated, know what I want … the doctor did an extremely thorough talk with me … made sure that I was really wanting to, that was the steps I wanted to take. (Lisa, 44)

The wāhine had quite different experiences of informed consent depending on their age, despite Maia and Whina being old enough to participate in their healthcare decisions.

Whina provided her thoughts on informed consent:

Don’t assume everyone knows why or what’s happening … make sure that they have the opportunity to ask questions, or that you’ve given as much information as you can prior to starting … it shouldn’t always just be done to the person, it should be done with them. (Whina, 40)

High-stress situations call for better communication

Being well-informed was particularly important in the context of stressful situations. Wāhine who described positive experiences felt that they knew what was happening throughout their stressful situations, whereas wāhine who reported negative experiences described feeling uncertain, scared and dismissed. Whina described her experience at the time of her first (emergency) Caesarean section:

The care was really good … they were pretty good at keeping me informed even when things were quite tense, because it was obviously an emergency. (Whina, 40)

However, when she later presented to discuss delivery of her subsequent child, she had the opposite experience:

I didn’t feel I was able to make informed decisions … there was no time for my husband and I to just have even five minutes to talk about it by ourselves … and I felt like the doctor just couldn’t wait to get us out the door … so I felt really pressured to have another Caesarean, which wasn’t my preference. (Whina, 40)

This experience left Whina feeling powerless.

Ruth (37) recalled her confusion during a cervical cancer scare:

All I could gather was that “abnormal” meant cancer … I was actually quite scared by that … the way it was sort of presented to me was, “you basically have cancer, we’re gonna figure out where your stage of cancer is …”, to “oh no, it’s fine now, there’s nothing there”. And it’s like, “Are you sure? Like, do we need to do another test?” (Ruth, 37)

Maia described how uncertainty worsened her experience of miscarriage in her first pregnancy, when her midwife was unsupportive and never contacted her again after advising her to go to hospital:

It was scary to go through that for the first time, and for my husband to go through that for the first time, and both of us not knowing what we’re doing. (Maia, 39)

This resulted in Maia experiencing anxiety when she became pregnant again later. The way that wāhine experienced being informed (or otherwise) during distressing events impacted on their psychological well-being and their trust of the medical system.

Improved dissemination of sexual health knowledge is needed

All but one of the wāhine reported learning about SRH through unofficial routes, such as through personal experience, sometimes with consequences such as unplanned pregnancy.

I was sexually active when I was a very younger teen … I didn’t know what the hell I was doing … I went to a twenty-four hour clinic, and they told me, “… you’re pregnant” … I didn’t think I would get pregnant every time I had sex. (Nikita, 39)

Others learnt about sex from their sisters, cousins and friends:

Everything was through your mates, your peers. (Mere, 44)

School sexual education was generally deemed insufficient:

In terms of actual information, I remember them doing some at school, but now that I’m an adult I think that it was terrible. (Whina, 40)

(Interviewer): Can you tell me about how you learnt what you know about sexual health?

(Marama, 50): Piss-poor Form 2 education.

The internet was one information source. Some wāhine used strategies to ensure they found more reliable information, for example, using Google Scholar or comparing multiple sources:

I’ll sort of look at the first sort of five pieces of information that came up, just to see if they match each other. (Ruth, 37)

Some of the wāhine said they would talk to a doctor about the information:

I’d probably go to my GP. (Sarah, 41)

But they also noted that access to doctors was problematic:

My doctor is usually always booked out. (Joanne, 28)

It was evident that the doctor played a role in ensuring that the wāhine felt able to ask questions:

She [GP] made it comfortable enough for me to ask questions even though I thought they were kind of dumb, and she talked me through all that sort of stuff and made me feel a lot better. (Maia, 39).

Often information is provided in written form during GP consults, however, this was not necessarily effective:

[Doctors] just give us a whole bunch of resources, “Take this, go home and read it …” But I’d rather somebody talked to me, talked me through it face to face. (Pip, 25)

The wāhine were asked what they thought of the idea of a free wāhine-only wānanga (setting of open discussion and teaching) about SRH. Ten of the wāhine thought this was a good idea:

I think that’s cool … if we can come to a place that we know, and learn about it, especially I think for women’s stuff (Whina, 40)

It would probably be a more comfortable space for people … if there’s familiar faces around and kai. (Pip, 25)

Wāhine noted such wānanga would suit people struggling to afford doctor appointments. Some wāhine did voice that shyness could be a barrier:

Personally myself no, only because I get a little bit anxious in big groups like that. (Joanne, 28)

Anahera thought intergenerational mingling could be beneficial, so that experienced wāhine could support younger people:

I think the younger generation needs to see experiences from older women, and meet people who have had real struggles having kids when they’re younger. (Anahera, 35)

Marama noted that having a respected older wāhine would help keep the wānanga on track:

You’ll have a toa, or an aunty in your whanau, yeah? Grab them along, because someone will pick up, and then they’ll say “ah shut up”, you need someone like that … that’s the only way we’ll all listen. (Marama, 50)

Overall, the opportunity to be able to ask a knowledgeable person questions in a comfortable community setting rather than in a consult room appealed to most of the wāhine.

Strengths and limitations

The age range of the participants generated multigenerational data, although the older wāhine were sometimes trying to recall events from decades ago. The semi-structured nature of the interviews and whakawhanaungatanga resulted in a rich dataset. Manual transcription of the interviews allowed thorough familiarisation with the data.

Only 12 wāhine from one city were recruited. Interviewing wāhine from other parts of NZ would be valuable: the lived realities of Māori and the structure and availability of healthcare services vary across the country, so these results are unlikely to represent all wāhine. Finally, the wāhine were not given the opportunity to review their transcripts or the final manuscript, limiting the portrayal of their experiences to the interpretation of the researchers.

Implications for policy and practice

This study indicates that HCPs and health services need training regarding their responsibilities in supporting health literacy across the population, and keeping patients well-informed about their SRH care. HCPs should be also able to utilise a Māori model of clinical assessment, such as the Meihana Model⁴⁹ (demonstrated by Al-Busaidi et al.⁵⁰) to provide culturally safe care for Māori. Finally, interventions to disseminate SRH information could be helpful in improving SRH outcomes for Māori, particularly if Māori lead their design. Further research could explore methods of disseminating knowledge about SRH among wāhine, such as wānanga.