Fifteen people participated, comprising of 13 people with lived experience of an ED (AN n = 8; BN n = 4; BED n = 1) and two whānau members who supported their relatives with AN. The majority of participants were female (n = 14). The analysis of whaiora and whānau experiences identified two themes that illustrate self-perceived enablers and barriers to accessing ED treatment for Māori. The first theme, Space, critiques assessment methods including the subjective nature informing the assessment method used, service location, and the limited number of beds available in specialist services for EDs. In the second theme, Place, participants critique the privileging of non-Māori experiences and the implication that this creates including a place of exclusion for Māori patients with EDs and their whānau in ED spaces in NZ.

Eating disorders, a hard-to-reach SPACE for Māori

Space was reported as the material culture or the physical resources used in health care settings. This included service settings, locations of specialist ED services, service integration, and assessment methods for EDs. Specifically, the concepts of access to space being a matter of privilege, and a matter of time were identified as subthemes that will be extrapolated within this section.

Access to space, as a matter of privilege was identified as participants critiqued the tools used by health professionals to assess EDs that determine inclusion/exclusion criterion for access to publicly funded specialist ED services. Participants accounts of their assessment and referral practices indicated that these practices were dependent on the ED-health literacy of the health professional, which in many instances created barriers to accessing further ED treatment. Testing measures used to assess for EDs within this cohort ranged from no test, enquiry into daily food intake, weighing and body mass index, depression scale test, blood tests, or electrocardiogram. For most participants, assessment methods included the use of one of these assessment tools, but for others, no objective assessment measures were used:

“I remember quite plainly one GP (general practitioner) saying to me ‘look don’t worry, I don’t think there’s anything going on, I usually get a feeling up the back of my neck when it’s something like an eating disorder and it’s not that’” TK10.

Participants expressed frustration when GPs privileged their own knowledge over and above the voices of whaiora and/or their whānau experiences because it resulted in multiple GP visits over extended periods, and delayed access to timely care:

“[GP said] No, her BMI is normal she’s fine. I said ‘she’s not fine she’s lost 10% of her body weight in the last two months, she is crazy and she’s not eating very much, I’m sure she has Anorexia?’ …. It wasn’t until she was admitted at the end of October, because I had taken her back three or four times and when we finally insisted on getting a CAMHS [child and adult mental health service] referral” TK03.

Access to space as a matter of time was noted as participants described the factors that contributed to delayed access to timely treatment for their ED. Location of services, limited beds, and comorbidities were identified as key factors. Wait times for inpatient treatment ranged from 1 to 6 months. Those in rural locations described a lack of ED expertise available including for secondary health services. Participants noted an observable difference in the quality of care in rural settings when compared to health professionals within specialist ED services. However, specialist ED services were located in urban centers. Accessing specialist ED services resulted in the separation of whaiora and whānau during periods of treatment.

“Definitely more regional support [is needed] so like… not in the cities, there is quite good support, but in places like [rural location] there’s not really anything. I’m not really sure about now but throughout the whole time I was sick, there wasn’t anyone who treated eating disorders and the hospital were quite difficult around it, so more understanding from medical professionals as well, like more education around it” TK13.

There was an overwhelming consensus among participants that limited beds in specialist ED services was a major contributing factor to delayed access to care. Some participants identified coexisting disorders as a factor that contributed to delayed access to care. For example, one participant reported that during inpatient treatment in specialist services for bipolar disorder, they could not gain access to specialist ED services until perceived issues relating to bipolar were addressed. This example documents the need for service providers to consider integrated approaches to healthcare, including better connections between services rather than a sequential siloed treatment approach:

“More flow between eating disorders and other services, more connection because from my point of view I feel that eating disorders is quite separate and it's hard to get them involved and waitlist times are horrible. If I’m struggling and I get referred back there it's like oh cool it's going to be a three month wait and I’m like well, by the time it gets to that three months I’m like nah – whatever” TK01.

Participants described wait times as distressing experiences due to the observation of the deteriorating health of whānau.

Eating disorders, a PLACE of exclusion for Māori

Place was described as the location in which health care was delivered and its ascribed meaning for the participants. This was created through social interactions, memories, feelings, emotions, imaginings, and the use of the physical location. Ascribed meaning included societal views embedded within place. The variables helped to create spatial transformation which gave the place attributes that were identified as: promoting stereotypes, discrimination, and bias that acted as barriers to the service being an inclusive place; systems of support; or stigma, shame, and a place of secrecy. Each of these attributes are presented as subthemes of place.

Stereotypes, discrimination, and bias, barriers to an inclusive place were well noted by Participants as attributes that contributed to experiences of bias and discrimination resulting in delayed access to care. Participants identified two social narratives that acted as barriers to accessing treatment. These included assumptions about what a typical ED looks like including whom EDs affect, as well as, factors contributing to the development of an ED. The latter considered societal-held assumptions about the value of food in Māori culture. Participants identified cultural stereotypes as not only additional barriers to access, but also barriers applied exclusively to Māori. Participants acknowledged the impact of EDs as a perceived ‘western-bound syndrome’, not only based on their own understanding of EDs, but also on how these biases are held within wider society including for health professionals.

“I think I found it made me quite like a little bit annoyed because I felt like people had this idea that it affected European teenage girls and they had to be quite wealthy and like all those strange kinds of stereotypes. Like, even before I was ill, I thought the same thing” TK13.

“I don’t know whether, if they would have taken more action if I had looked different or if – and I gotten me help more immediately” TK09.

Participants expressed frustration with the notion that Māori do not experience EDs because of the role of food within Māori culture. Participants noted that food is present in all Māori social gatherings although not exclusive to Māori culture.

“I mean we had some jokes like I never heard of a Māori anorexic before. There’s food everywhere, but that’s in every culture” TK03.

“I had this feeling like I’d be judged more because I am Māori and Māori should – we like to eat lots and we shouldn’t have any issues around food” TK08.

Participants' experiences tell us that the prioritized narrative within ED has focused heavily on European experiences. This resulted in internalized negative beliefs that rationalize or seek to confirm why EDs do not exist in Māori. The unintended consequence has resulted in some whaiora questioning affiliation to Māori identity.

Systems of support to navigate place, describes the multiple systems of support required to enable whaiora and/or whānau to successfully navigate health care settings for access to ED treatment. Participants identified systems of support as both enablers and barriers to accessing specialist ED services for ED treatment. The systems included family and friends, or health professionals within primary healthcare settings. Characteristics of positive interpersonal interaction with health professionals included empathy, and continuity of care. Positive characteristics of whānau support, including friends, are described as acting swiftly to Participant concerns by aiding or taking an active lead in navigating systems in place.

“So, I reached out to my parents for some help. I have got a really good relationship with my parents. And let them know I had been struggling and then kind of the whole clinical process started so that was an interesting one, too, because the day after I told my parents that I had been purging all of my food, my Mum took me to the doctor” TK11.

“I think school was such a struggle so having someone if something was going wrong at school then I could just go to and I just really clicked with her and it was just nice to have someone to talk to because I didn’t have anyone, any professionals involved in my care at that time” TK01.

When systems of support were insufficient, self and/or whānau advocacy was needed to overcome barriers to accessing treatment. Participants described this process as persistence. Persistence entailed ongoing consultations with GPs, demanding access to care, or learning to navigate the system that allowed for a bypass of gatekeepers to specialist treatment for EDs.

“I’m angry, but I also want to educate people so that no other family have to go through what we’ve been through to get treatment. I mean for God’s sake I work in the health system and we got screwed over at every corner. I knew what I was doing, I knew who to ask what and I still you know got bamboozled” TK03.

Participants acknowledged the pivotal role of health professionals and whānau in gaining access to treatment for EDs. However, when systems of support are not available, self and/or whānau advocacy are required to navigate the systems in place.

Stigma and shame, a place of secrecy, in this subtheme Participants described the impact of stigma on their ability to share ED behaviors or concerns. Stigma was stated to result in shame, which supported secret disordered eating behaviors. Stigma was related to a perceived hierarchy amongst EDs. For example, AN was often perceived as an ED to fear notably as a result of one’s fragile appearance. Participants agreed that thinness was perceived to be a marker of illness severity. The messaging was experienced within the Participants’ social environment and through interactions with health professionals within primary healthcare settings. As a result, those with BN or BED claim their illnesses were less valued.

“I just think a lot of people were scared of because when people say anorexia, you have these images in your head of someone so frail and you don’t want to hurt them. There’s like a scare around it. And especially being Māori” TK07.

“…that’s how long it has taken me to really, that’s how much shame I had attached to that. And even though I hadn’t actually like purged since I was maybe 24. I still feel so embarrassed that I had had this disorder and that I felt like I had to do that” TK08.

Enablers to accessing treatment included health promotion and health literacy. Some Participants expressed empowerment through TV personalities sharing their lived experiences of mental health issues including EDs. Explanatory frameworks that included exposure to childhood adversity as contributing factors to EDs development was viewed by participants as reflective of their own experiences. The lived experiences of diverse populations assisted in creating narratives that whaiora could relate to, encouraging acts of self-disclosure amongst family and friends.

“No-one wanted anything to do with it until I posted and was really open about it. And it was weird because I saw a Mike King [NZ comedian, advocate for mental health awareness] thing and it was something about him saying that you need to be vulnerable and something like that, and I was like, you know what, yeah I am sick of being embarrassed of this. And that kind of opened up the gates for me to start recovering, I guess. Because there was nowhere to hide anymore” TK07.