Are patients with type 2 diabetes in the Waikato District provided with adequate education and support in primary care to self-manage their condition? A qualitative study

Data collection

This qualitative study was part of a larger T2D management in primary care research project and participants were recruited in one of three ways. First, patients with T2D who completed a survey about their diagnosis experience¹⁸ were invited to participate in an interview. Second, advertising using electronic posters on ‘Diabetes NZ’²² social media platforms and networks were circulated, which invited participants to contact the researcher to volunteer to take part. Third, a snowballing strategy was utilised,²³ whereby participants were invited to tell anyone they knew who might like to participate to contact the researcher, RC. Potential participants were all given an information sheet that outlined the purpose of the study, and any concerns or questions were discussed and answered before consent was given. Once participants had agreed to take part, a suitable interview time and location was organised for interviews, which were held at the participants’ convenience (either at the participants’ house, or via Zoom). A Māori interviewer was involved in carrying out all interviews (RC). The multi-disciplinary research team included a Māori advisory group (made up of clinicians and academics) to ensure the Māori participant data were collected, analysed, and presented in a culturally safe way.

Procedure

Interviews were conducted using an interview guide consisting of open-ended semi-structured questions (see Appendix 1). Participants were encouraged to speak about their experience of education and health provision in primary care and expand on their narratives as the conversation naturally evolved. A participant information sheet explaining the purpose of the study was provided before the interview stage, explaining the purpose of the study and further instructions were given to the participant for their own use. At the beginning of each interview, the objective of the study was verbally re-stated, and participants were reminded they could end the interview at any time. Before commencement of the interviews, participants were offered culturally appropriate ways to open the meeting, such as inōi (prayer) or kārakia (Māori incantation). Interviews were conducted face-to-face (kanohi te kanohi) at a location of the participants’ choice or via Zoom, and all interviews were audio-recorded. Interviews lasted between 15 and 60 min. All participants were given a NZ$50 gift card and kai (food) was provided if the meeting was conducted in person, as an appreciation and to recompense participants for their time.

Analysis

All interview data were transcribed using transcription software (otter ai) and checked manually for errors, accents, and colloquial terms. Two researchers (RC, VP) completed the preliminary analysis guided by the thematic analysis by Braun and Clarke.²⁴ For this, each transcript was read, and re-read by the researchers to enable absorption of the data. On each transcript, areas of text were highlighted that were deemed to be significant to the participants’ narratives and their experiences with information provision at diagnosis, which formed the codes of this analysis. Each transcript was analysed by each researcher independently through coding important themes. These highlighted transcripts were shared and reviewed between the original two original coders (RC) and (VP) for consensus and then distributed among the wider team. An analysis day with the broader research team, where these transcripts and themes were comparatively re-analysed for any missing codes, narratives discussed and grouped into five broad themes. These broad themes and findings were discussed in depth with the wider multidisciplinary team to ensure a reflexive and rigorous analysis process. This process involved a comparison of themes, robust discussion and re-analysing until three tangible themes were finalised. Finally, themes were presented to representatives from the Māori Advisory Group (MAG) where they were studied and agreed upon to ensure cultural validity. The COnsolidated criteria for REporting Qualitative research²⁵ were used to inform reporting of the study findings.

Ethics

Ethical approval was granted by the University of Waikato Human Research Ethics Committee (reference HREC (Health) 2021#74).

Ineffective provision of resources and education methods

Several participants reported that they were overwhelmed by their T2D diagnosis and not provided with adequate education at the time of their diagnosis to understand the aetiology of diabetes, its physiology, and pharmaceutical advice. For those that were provided education, the methods of resource provision (eg pamphlets, conversations), were ineffective, resulting in a lack of awareness of diabetes physiology, symptomology and mechanisms of action and side effects of medications. However, these same participants did understand T2D impacts their health in negative ways:

‘I still probably don’t grasp the semantics of what diabetes does…it’s just it’s something to do with the pancreas. I know, it’s something to do with blood sugar…. I don’t think I’ve grasped the concept of it…I know that it’s bad’ (Participant 6).

This lack of understanding was further expanded upon:

‘I didn’t grasp an understanding of how I got it [diabetes], that it was never answered, or what if I can get rid of it or anything like that. So I sort of came away thinking I’ll take these tablets, and in six months, everything will be great’ (Participant 7).

Some participants disclosed they were unaware of how to administer medication, such as insulin, and resorted to watching a YouTube video. Monitoring blood glucose on a long-term basis was not effectively explained. Another participant expressed confusion about the best monitoring practices, as this was not part of their diagnosis discussion.

Many participants commented on the suitability of provided resources. Most highlighted their healthcare practitioners provided pamphlets to learn more about diabetes and how to implement sustainable lifestyle modifications. However, although pamphlets were positioned as useful for some, as they could use them for reference later, this was not the case for others. Many emphasised the need for information to be delivered in alternative mediums, such as conversational, or audio-visual formats.

‘I really needed to be talked through it. It’s alright reading pamphlets. But when you take them home, and you put them away, which is exactly what I did! Also, if someone had given me a DVD, or something like that, I would have come home and watched it on the TV so then I would have been able to go from there- because I’m visual, audio you know?’ (Participant 3).

Another expressed:

‘…she [diabetes nurse] started to bring out all of these blinken [sic] pamphlets which end up in the rubbish, sometimes the hands on is better than the book’ (Participant 5).

Participants indicated a need for resources to be relevant and tailored to their specific needs. One patient mentioned she received information on driving and on drinking alcohol, both of which were irrelevant for her. In contrast, other resources were deemed to be effective and well-used by some participants. For example, one participant was given a convenient nutrition information card by his healthcare practitioners. He was able to carry this in his wallet and refer to it when food shopping, allowing him to make more suitable food choices. What made this information distinctive, was its small size, being transportable in his wallet, and its use of numerical and pictorial information.

Although half of the participants were of Māori descent, some had strong feelings towards use of pamphlets designed specifically for Māori patients, whānau and their communities. One participant expressed that he would like to see more resources in Te Reo Māori, especially those aimed at younger audiences:

‘“he mate huka ahau” [I have diabetes] …it would take the stigma away from it, to normalise it. And it would be in very simple language that even an adult who’s starting to learn Te Reo, would be able to absorb and understand’ (Participant 1).

In contrast, one participant said although she liked the use of Māori words (kupu), she did not perceive it was translated in a meaningful way, taking account of cultural context; rather, it was a transliteration of the English version.

‘Even putting in te reo Māori. I gotta spend half the time translating for them [other patients]. That’s like another tick box thing? I think all you have done is just word for word [translated from English to Māori]… so there’s nothing there for us’ (Participant 5).

Poor communication with their healthcare professional

Communication difficulties at the time of diagnosis were reported by most participants, which was demonstrated in a failure to diagnose face-to-face (kanohi te kanohi), participants feeling uncomfortable in bringing up pertinent questions, and a lack of support at a stressful time. For some, discussing diabetes with their healthcare practitioners was not an option at the time of diagnosis; for example, one participant described her diagnosis was delivered via text message, an unexpected and alarming medium:

‘I was diagnosed via a text notification…And it had been as a result of going to the doctor for previous medications, then the message just said, you are now diabetic and just gave the information around the readings’ (Participant 11).

Diagnosis delivery was described in association with concepts of ‘distress’ and a lack of support or time availability from their healthcare practitioners.

‘It is quite shocking to be just to be told that you have diabetes, and then be sent on your way’ (Participant 7).

The manner in which the healthcare practitioners communicated was a further factor in how participants felt about their diagnosis and management (eg some participants felt uncomfortable raising questions). Participants explained the need to feel secure enough to prompt discussions and receive honest, informative answers. Participants also reported a desire to build trusting therapeutic relationships where the healthcare practitioners listened to their concerns.

‘If they [patients] are shy, the GP or health nurse should be welcoming and ask open-ended questions… don’t make them feel uncomfortable’ (Participant 8).

‘It took me ages to find a GP that actually listened…’ (Participant 9).

Many participants reported a desire for explanations about diabetes and medication from their healthcare practitioners in an understandable way. This communication should use simplistic terminology, and minimising the power imbalance can assist with information being effectively received.

‘It’s talking at eye level, not talking up here [indicates a higher level on a hierarchy with their hands]. Because the minute somebody talks up here, well, I’m just going to well….my ears are off…Do away with all the medical jargon, and just dim it down’ (Participant 5).

For some participants, the information they received was insufficient, leaving participants with feelings associated with a lack of support from their healthcare practitioners and having to ‘manage it on their own’. Most patients reported feeling left to their own devices, lost and not equipped to independently manage their disease.

‘I know I’d be able to handle my diabetes if I had the proper support from the beginning, so I’m just winging it’ (Participant 3).

Whereas another participant detailed:

‘It would be great to have somebody who really, really understands and tells me the consequences of what could happen if I don’t do such and such’ (Participant 11).

Patients also highlighted instances where there was a lack of consistency in the communication they received from different healthcare practitioners, leading to confusion, and questioning the continuity of care.

‘I had a tummy bug. Five months into it. And I was like, do I take more medication? Do I take less medication? When I wrote to the doctors, they said, oh, you need to come in and be checked. And then when I rang the Healthline, they gave me different advice’ (Participant 2).

Health system barriers

Health system barriers outlines a theme where participants highlighted they were hindered from receiving the appropriate care required for their T2D management journey, due to a myriad of factors. Participants indicated that the 15-min appointment was not enough to adequately learn about and understand their diabetes, ask questions, and feel prepared for self-management.

‘You’ve got to bear in mind GP has 15 minutes. It’s not a long period of time to have an in-depth conversation about each medication that they’re going to prescribe’ (Participant 2).

Participants conveyed that seeing different GPs acted as a barrier to some parts of their health care as the therapeutic relationship is weakened. Continuity establishes trust and makes follow-up appointments easier.

‘So I don’t have just one [GP], you know, it’s whoever’s available at the time, which I find annoying… because they don’t read up your notes and so you’ve got to start from scratch every time… They don’t follow up your progress ….’ (Participant 3).

For participants who identified as Māori, health system barriers such as institutional racism and cultural insensitivity were experienced. This impeded the appropriate, culturally safe care:

‘I know that there’s a lot who don’t really care about it, especially when it comes to people of colour, in general. Pasifika and Māori. They [healthcare practitioners] are just like “you got diabetes, you know, it’s what your people get” like. It’s a whole mind shift. That’s an ingrained type of racism and the thought process that they have…’ (Participant 4).

Although some participants had these negative experiences, there were contrasting positive experiences. One participant found healthcare practitioners of the same culture, or who understood her life experiences.

‘I was dealt with a lot of European older women who were just like, Oh, of course you do [have T2D diabetes]…….The Māori nurse that I did have she was a lot more [understanding]. She was like, we’re not going to say those things [culturally insensitive comments]’ (Participant 4).

Strengths

This paper has included the recruitment of a strong representation of Māori participants for cultural representation. Having a Māori advisory group (MAG), along with Māori researchers, both clinicians and emerging academics, has allowed the analysis and dissemination of this manuscript to be viewed through a culturally safe lens. Participants were recruited from the wider Waikato area, which included smaller rural towns as well as urban centres, to gain a thorough understanding across all geographic locations, with the staff and provision of healthcare structure of primary care clinics sometimes differing. Using the time of diagnosis allowed data to be captured early in the disease trajectory, so improvements can be made to provision of education at the time of diagnosis.

Limitations

As with any qualitative study, findings cannot be generalised;^49,50 however, the themes identified were evident across many participant narratives. Although this research did include Indigenous participants, it was not designed as a Kaupapa Māori study, which could yield alternative findings.⁴ Our limited sample size of 11 may have been a cause for potential bias. A larger quantitative study found that 70% of participants were happy with education provided,¹⁸ though this information was all subjectively self-reported. Further, the recruitment strategy could have also played a role in bias, with patients opting in, thus potentially we received patients who wanted to discuss difficult experiences, as opposed to random sampling, which could have captured some more positive experiences.