Domain 1: obesity sits within the context of multiple other complex stressors for families in NZ

Participation in the Whānau Pakari service was affected by the multiple complex stressors of living in contemporary NZ. These were acute, one-off adverse events, such as a death in the family, and chronic, ongoing challenges, such as financial insecurity. Childhood obesity and overweight as a health concern sat within the context of multiple other important concerns for families. Participants were often living in ‘crisis mode’ or dealing with multiple challenges at once, including: financial and food insecurity, suicide, abusive relationships, deaths in the family, mental health issues, disability, relocation, marriage and family break-ups, fostering children, children being raised by other caregivers, drug use and significant other illnesses.

For parents of children with multiple health conditions, especially mental health concerns or autism spectrum disorder, addressing weight was often not perceived to be as important compared with other competing family health concerns. Parents and caregivers also reported the challenges of balancing multiple demands such as long work hours, shift work and extracurricular activities alongside attending Whānau Pakari.

I think he had one of his sporting things on and I was doing 50 hours a week at that time and I was like ‘oh, my God, I can’t do it’, I couldn’t do it. I mean, if he needed, if I felt like he needed to be there, I would get him there, like, it’s, my work’s not that important. Weeds and shit can wait, you know, like, people can wait um if it was a, if I felt like it was serious. I would have got him there, but I just yeah.

Similarly, socioeconomic deprivation and food insecurity was perceived to be a more immediate and pressing concern than childhood overweight or obesity. Both initial attendance and ongoing retention were affected by a lack of participant resources, even if participants expressed a desire to attend. Participants who engaged with Whānau Pakari and other services despite the impact of adverse stressors appeared to have more resources, and thus were less affected by this domain.

Domain 2: societal norms of weight and body size affect how people experience seeking care for weight

Societal norms and beliefs around weight and body size led to the minimisation of obesity and the fear of stigmatisation for participants (see also domain 3). These manifested differently according to the age, gender and the perceived role of genetics in obesity, and resulted in lower engagement. An exception was participant beliefs around perceived genetic propensity towards obesity, which in some cases led to higher rather than lower participant engagement.

The age of the child involved in the service affected the degree to which families chose to engage, due to a perception that children were too young to have weight problems, which was a key reason for both dropping out of the service early or declining input altogether. Children who were clinically overweight or had obesity were perceived to be a normal weight in early childhood and increasingly beyond. Some participants felt that while their child might not fit into a set of assessment criteria, this did not necessarily equate to their child being unhealthy.

When he got put in the […] ‘oh, he’s overweight’ box. And when you’re, like, ‘he’s not that overweight’, because it was just he wasn’t in their little boxes. I think that more annoyed me, is that they’ve got these sort of, like, ‘this is the normal weight for a 5 year old’. Well, there’s all sorts of different 5 year olds. He’s now 10 years and he is my height […] he’s a big guy.

There was a strong belief that if children were ‘big but active’, then their weight was not a concern.

… he’s always been big, but he’s really active. Like he wins the triathlons and the cross-country and he bikes and swims … it’s not like he can’t exercise or is held up, you know what I mean? And so we just thought well, and it’s not like he wasn’t healthy eating.

Families appeared more reluctant to engage their female children in services that are characterised as weight-related, both at initial recruitment and throughout the programme, for fear of their child developing self-esteem issues. Parents also reported their daughters were often reluctant to attend themselves.

To me it’s like you don’t need to involve her because she’s already self-conscious, soft-hearted, already upset about it sort of thing and, like, to me it was like more of a trigger. So, I was, like, no. I will do it my way. So I pulled back because it wasn’t worth it for her, you know what I mean? Like, her self-esteem and stuff is worth more than, you know, going to a dietitian where at home I can just stop giving her all that stuff to make her healthier. So that’s where it comes across wrong.

Overweight and obesity was often associated with perceived genetic propensity to obesity by participants. This was sometimes specifically linked to ethnicity, and specifically that Māori and Pacific Island peoples are ‘naturally big’. A perceived familial propensity towards overweight resulted in participants reportedly acting in two ways: either they did not want to engage because they felt that there was no point, given they perceived their weight to be genetic (panel 1), or they were compelled to engage more in order to counteract their genetics:

My side of the family is really obese so weight has always been an issue, so if you are trying to diet everyone gets behind you because they know what the challenge and the battle is. No, we don’t really care what other people say, we just get on with it.

Domain 3: historical experiences of healthcare affect future perception and engagement with services

Past experiences of healthcare influenced participants’ opinions, perceptions and behaviour in relation to seeking care again. This was a multidimensional phenomenon, acting across both weight and ethnicity. If participants had had negative experiences in the health system in relation to their weight or ethnicity, then they were less willing to engage with Whānau Pakari and other health services. This mostly affected participants who declined further input after their referral or who discontinued after one assessment. This was especially important if the referral experience to Whānau Pakari was negative, given that this may have been the first instance of being confronted about their child’s weight.

Basically they told her she was obese [at the B4 School Check] … Yeah, that she was obese for her age and they said this in front of her, and she was like ‘what is obese’? And they said, ‘you’re bigger than any other child your age’ but she’s not the only one […] So they say it in front of a child, it sort of knocks their self-esteem and their confidence right back.

While weight stigma was experienced across all groups of participants, there were few feelings of stigma about attending Whānau Pakari for those participants who engaged highly (≥70% of sessions):

There was nothing to be embarrassed about. You know, like secretive about it. It was something that I was doing for my kid, to help her get better in herself and if someone else had a problem then that was their problem, not mine. At the end of the day it is about her. Not about what anyone else thought.

Experiences of racism in the healthcare system and in wider society affected how participants reengaged with health services. This included a wide range of race-related experiences from interpersonal to institutionalised racism. Likewise, participants recounted a variety of responses to these experiences from renewal of engagement and wanting to ‘prove them wrong’, to disengagement with outside entities and organisations, to internalised racism.

… we have been through so much stigmatisation that nothing more than one thing matters […] because for us it’s about the betterment of our children and our whānau [family] as a unit.

Mediator 1: respectful, compassionate care mitigated past experiences

Conversely, positive and respectful care received in both the Whānau Pakari programme and in other areas of the health system mitigated the effect of the first three determinants, particularly against the impact of past negative experiences of healthcare. A positive referral experience generally set a positive tone for interacting with the Whānau Pakari service itself.

So we decided yes, this would be an awesome programme for our daughter, because we wanted her to just have some stability at the time because she was just starting high school, going into a phase where people were judging and things like that, you know, building her self-esteem […] It’s helped her with her confidence and just building a life that’s easy for her, you know. So, yeah, I thank [referrer] for that and for putting us onto that programme too because it was really awesome. We, as a whānau, we enjoyed it, and just being able to support her in that programme.

Participants who did engage with Whānau Pakari reported that the care received in the programme was ‘different’ from previous care received and that the programme deliverers were ‘like a family’. For these families, the respectful and compassionate care countered some of the negative effects of past experiences.

It was just the people, that’s all it was. It was just the approach of the people to be honest um and that made us comfortable, and I go by my children a lot because if they’re uncomfortable well then they’re not the right people to be around for us. And they were comfortable.

The social and team aspects of Whānau Pakari were beneficial for families, as well as the perceived extra care received.

I liked it. I didn’t think I was going to. I thought ‘oh, this is going to be stupid’, but no it wasn’t. It was actually a bit of an eye opener. I actually learnt something. And then we just recently got her blood tests and all that done again because through the doctors they didn’t do no diabetic tests or anything like that. Through Whānau [Pakari] they did. They did heaps more than the doctors did. So I think that’s pretty much why we stayed with them, it was like ‘aha, we can get some serious help here’.

Figure 1 summarises the interacting and mitigating domains affecting participant engagement.

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Figure 1

The three interacting factors that influence participant engagement in Whānau Pakari. Respectful, compassionate care can partially mitigate the effects of these determinants.

Discussion

This study found that engagement in Whānau Pakari was determined by the degree to which participants were affected by three interactive domains: complex adverse life stressors, societal norms of weight and body size, and past experiences of healthcare. These complex mechanisms operated at multiple levels including at the service, health system and wider societal levels, so that experiences at the seemingly distal societal level could still have an impact on participant engagement at the service level. While the impact of these factors was evident across all four groups, some participants appeared to be resilient to the impact of these determinants. Additionally, respectful and compassionate care appeared to act as a positive mediator. Conversely, participants who declined further input after their referral were more likely to be experiencing greater life stressors without the resources to overcome them. Participants also appeared to be affected by societal norms of weight with regards to age, gender and the perceived impact of genetics, and negative experiences of healthcare often resulted in complete disengagement.

We were surprised that clear recommendations for specific changes to internal programme aspects were not forthcoming from participants across all levels of attendance, as this was a specific intent of the project. Although factors such as the difficulty of attending programme sessions with shift work and other stressors were identified as a barrier by some participants, there was no clear consensus on factors such as timing and location. While forces external to the service affected engagement, our study indicates that there are opportunities at the service level to facilitate initial and continued engagement in Whānau Pakari, and potentially other services. Despite the negative experiences of participants in the health system (both weight and non-weight related), the care received in Whānau Pakari by deliverers was generally seen as ‘different’, and a key reason for wanting to continue with the service.

In our study, many participants who declined further engagement after their referral were reluctant to identify their young children as having weight issues and requiring assistance. Past research has identified multiple reasons for parental reluctance to identify overweight in their children,29 including not recognising obesity as a ‘disease’ and therefore not warranting the same attention as other health concerns, and wanting to avoid further stigmatising their child. Our data suggest that families are especially concerned with the mental health of their children, which was often perceived to be more important than identifying and addressing overweight and was a key reason for declining referrals. There appears to be a disconnect between the focus on early life intervention due to the expected growth trajectories of young children with overweight or obesity into obesity in adolescence and adulthood30 and the concerns and priorities of parents with young children.

Research indicates that parents of girls with overweight or obesity are more likely to enrol them in healthy lifestyles programmes than families with boys with overweight or obesity.10 The contrasting findings of our study, which also included participants who declined their referral, show clear parental concern for the mental health and self-esteem of their daughters, which may reflect a desire to focus on positive body image, self-esteem and mental health and avoid increasing body dissatisfaction.31 The findings of this study would suggest that the differences in how men and women experience weight in society contributes towards the differing retention rates between male and female participants at the service level. It is concerning that two important health issues—overweight and mental health—are pitted against each other as perceived incongruent concerns, given that both are significant causes of ill-health among children and adolescents, and suboptimal health-related quality of life was identified in a previous cohort with weight issues.2

Puhl and colleagues argue that message framing with regards to terminology is vital in childhood obesity programmes, in order to prevent further stigmatisation of families seeking help for weight.32 While the Whānau Pakari programme aims to be non-judgemental and non-stigmatising, it is equally important that the referral to the service is perceived to be non-stigmatising by families in order to encourage engagement. Given the impact of the referral experience to Whānau Pakari on initial and continued engagement with the service, the referral process must be respectful and compassionate, with an acknowledgement of past instances of stigma and discrimination. The sensitivity of weight as a discussion topic requires non-judgemental language, compassion and an acknowledgement of the wider context and potential pressures on the family.32

As in previous studies,33 many participants in this study had experienced weight stigma, blame and judgement from health professionals as well as a societal culture of weight bias. Indigenous participants often experienced this in addition to varying forms of racism. The impact of racial discrimination on healthcare use in NZ is well-documented,34 35 and the compounding impact of multiple stigmas is likely to contribute towards differential attendance rates between Māori and NZ Europeans. Previous weight bias and racism which occurs outside the service may play a role in participant reluctance to engage with Whānau Pakari. Further research should investigate the role of racism and weight stigma in engagement with healthcare for weight issues among marginalised ethnic groups.

Strengths and limitations

The strengths of this study include the large sample size across participants with varying levels of engagement which allowed for in-depth and broad analysis. In addition, this study included data from a targeted group of participants (those who declined further contact after referral) whose lack of contact with the service limits the power of quantitative methods in drawing conclusions, and who are typically difficult to recruit, as recognised in previous studies.10 Finally, there was good representation from families with Māori children who comprised approximately half of the interviews, allowing us to draw conclusions for a group whose voice is historically absent from obesity research.

The main limitation of this study was the lack of child and adolescent voice with regards to their experiences with Whānau Pakari, as only five interviews included the child or adolescent as a participant. While it was intended to conduct interviews with families, many parents at recruitment were reluctant to involve their children due to the sensitivity of material discussed or were unable to involve them due to timing issues. This meant that children’s experiences have mainly been explored through their parents’ accounts, rather than through their own voice. In addition, previous literature has largely focused on the effect of child/adolescent gender rather than parent gender on perceived barriers to engagement.10 In our study, the majority of participants were mothers or female caregivers, which may have affected the results. While this study included a range of participants from a variety of different backgrounds (table 1), it lacks specific participant demographic information such as age, socioeconomic status and education level. Finally, it is possible that participants were discretionary in what they chose to share; however, the disclosure of extremely personal and sensitive experiences suggests that any researcher–participant power dynamics were overcome by steps the interviewers took to mitigate this difference (see online supplemental appendix 1 COREQ checklist).