A qualitative study on the primary care research priorities of people in Southern Aotearoa New Zealand

Introduction

Substantial clinical and administrative data are collected every day in primary health care (PHC) in Aotearoa New Zealand (NZ). These data provide an opportunity to undertake healthcare research relevant to the population from whom it was collected.¹ The Southern Primary Care Research Network (Southern PCRN) has been established in Otago and Southland through a collaboration between the regional Primary Health Organisation WellSouth and the University of Otago.^2–4 The Southern PCRN aims to improve health equity and health outcomes through PHC research.^2–4

Identifying community research priorities increases community engagement in the research process and provides the opportunity to meet health needs. Internationally, various strategies have been used to prioritise research questions, the majority including stakeholder involvement.^5,6 Stakeholder involvement is pivotal for identifying health research needs and improving health equity.^7–9

The research priorities of the Southern PCRN stakeholder clinicians and academics have been identified.⁴ Healthcare users are also critical stakeholders as the data relates directly to their health care. The voices and research needs of healthcare users, particularly those belonging to ethnic groups including Māori (indigenous peoples of NZ) and Pasifika (those from the Pacific Islands), and other communities with specific health needs, such as rural, migrant, and tāngata whaikaha (disabled) populations, must be given precedence when establishing research priorities.^5,10

Te Tiriti of Waitangi mandates partnership with Māori in all things, including health research. Including Māori priorities in research provides the opportunity to benefit all within the Southern region.⁷

This study aims to explore the PHC research priorities of health populations with significant health needs in Otago and Southland.

Methods

A community-based participatory approach and interpretivist perspective were used to hear from health users in urban and rural Otago and Southland in NZ.^11,12 Community members were invited to share their experiences and understanding of health equity and suggest research needs. Focus group interviews permit a wide range of opinions and experiences to be shared.^13,14 Interactions between participants provide a richer understanding of the issues being discussed.^13,14 From May 2024 until July 2024 the researcher (AW) recruited participants predominantly through community organisations. Relevant community organisations were contacted and participants recruited via their networks either through organisational advertising or directly by the coordinator. No potential participants were excluded.

Research participants were purposively recruited from communities that have unmet health needs and are often not visible within research. These priority communities were based on the New Zealand Health Strategy 2023, which included Māori and Pacific peoples, tāngata whaikaha, women, and rural communities.¹⁰ Other diverse voices were also sought, such as older people, rainbow, and neurodiverse.¹⁰ Focus groups were broadly organised by community type, while acknowledging that all participants are members of a wider range of communities. A range of focus group locations, including online, were chosen to ensure rural and low socioeconomic community participation.

Five in-person groups were held in accessible public meeting rooms. Supporting host organisations chose the meeting location and timing. Two online groups were held using Zoom videoconferencing software. Written feedback was accepted if participants were unable to attend focus groups. All focus group meetings were recorded. Each recording was transcribed by an independent transcriber. A physical or online whiteboard was used to make notes during focus groups; participants could see these notes, which were used to facilitate conversation and a prioritisation exercise.⁸ Sharing of information and discussion between participants was supported.

All groups were facilitated by AW; SL attended and acted as a scribe for two online groups and one in-person group, the other four groups were scribed by AW. Participants were reimbursed for their time with a NZ$25 supermarket voucher. Participants signed a consent form at the start of each session. Demographic data were collected using a questionnaire based on Stats NZ Tatauranga Aotearoa guidelines.¹⁵ Rurality was defined using the Geographic Classification for Health (GCH).¹⁶ Sessions commenced with introductions, followed by a brief presentation on PHC and health equity. A discussion guide was used (Supplementary Files S1 and S2). The number of focus groups held was determined by data saturation.¹⁷

Transcripts were thematically analysed in NVivo software.^18,19 A general inductive approach was taken.^12,20 Data analysis occurred throughout the project by AW, with SL reviewing codes and themes. Initial codes were generated based on words or phrases used. Codes were printed and manually sorted into similar groups and subthemes, and then collated into major themes. All data were reviewed and recategorised as appropriate. When collating codes into themes, consideration was given to the overall focus of the research, namely health equity and research needs in PHC. AW, a female qualitative researcher raised in urban, middle-class Pākehā culture, considered their positionality throughout the research process.²¹ SL is a female Pākehā GP and health researcher involved with the establishment of the Southern PCRN.

The consolidated criteria for reporting qualitative research (COREQ) were used to inform the reporting of the research (Supplementary File S3).²²

Results

Seven focus groups (FG1–7) (50 participants) were conducted in the Otago and Southland regions. Five focus groups were held in person in Dunedin (2), South Invercargill (1), Gore (1), and Queenstown (1). Two online focus groups were held for tāngata whaikaha people, carers of tāngata whaikaha, and people with chronic illnesses. One person was unable to participate either in person or online, so instead submitted feedback by email. Participant characteristics are described in Table 1. Table 2 provides the key for the focus groups.

Participants spoke about their own experiences as patients, whānau members, caregivers, and as part of their community group.

Table 3 lists the most common descriptive codes, subthemes, and themes. Three main themes were identified that describe the patient experience of inequity in PHC and help define research priorities. Underpinning all themes was communication; participants considered communication to be the top priority for improving health equity. The other two main themes were access to care and quality of care. Illustrative quotes and example research questions from focus group discussions are presented in Box 1. Quotes are identified by focus group.

Theme 3: quality

Participants wanted the quality of health care explored in research, as this directly affects health equity. Quality was underpinned by a good relationship with a culturally safe PHC provider who provided holistic care. Participants wanted a partnership-type relationship with their healthcare provider that involved access to their own notes and shared decision-making about their care. Participants wanted to be heard and respected by their healthcare providers, but this was limited by consultation time. Participants did not consider 10 or 15 minutes enough time for quality care. Nurse practitioners were thought to have more time to spend with patients.

Participants recognised that they brought their own previous healthcare experiences into consultations. Some participants reported medical trauma, which they attributed to misdiagnoses or late diagnosis. Past trauma diminished their confidence to express themselves clearly and explain their symptoms in a way that could be understood by the clinician, which was a limiting factor to receiving appropriate care. Culturally safe care was not always available, particularly for Māori, female, Muslim, gender diverse, and neurodivergent participants. This included the healthcare provider availability, eg a female GP for female Muslim patients. Culturally unsafe consultations were another source of medical trauma.

I use ‘she’ and ‘they’ pronouns. I’ve never told a doctor that because I just know I’m going to get some kind of microaggression … I’m a very pale-skinned Māori, as a lot of Kāi Tahu people are, and the things that have been said to me by doctors is really disrespectful. (FG2)

Participants sought holistic care, which considered other approaches rather than purely relying on medication. They wanted healthcare providers who considered the support structures a patient may or may not have when consulting with them. For some, this meant a whānau-centred approach. One participant was concerned by the approach taken by their GP, because it was totally medication focused and seemed to ignore safety concerns:

When I voiced that I was worried about my own safety, because of my mental state, she just said, “OK, do you want some anti-psychotics?” I said, “No thanks. I don’t think that’s necessary.” And then, she was like, “OK. Bye.” I remember just how ridiculous it was walking out the door with my car keys in my hand, after I just said something like that. (FG3)

Misdiagnosis and late diagnosis had adversely affected several participants for conditions including autism, Ehlers Danlos Syndrome (EDS), whooping cough, and multiple sclerosis. Although participants understood that some of these conditions can be difficult to diagnose, the impact on the patients was significant. The late diagnosis of autism had led to misdiagnosis of mental health conditions for more than one participant.

I go to a GP in [different suburb] because he understands my condition. And it took me a long time to find one that does. And, too, someone that listens, and doesn’t kind of fob me off. I spent at least 10 years in the mental health system, and some time in-house at [Psychiatric Unit]. It wasn’t till I researched stuff myself that I found out (what I have). (FG3)

Diagnostic overshadowing was mentioned directly and indirectly in several groups. This concept refers to clinicians erroneously assuming new symptoms are the results of an existing physical or mental condition, resulting in inadequate investigation of those new symptoms.²³

Discussion

This study sought to identify the research priorities of patients and community members in the southern region of NZ through discussion about the issues participants or their whānau face when accessing PHC. This is the first study that has asked these questions in NZ. The three key themes relating to equity were identified as communication, barriers to access, and quality of care. These themes are consistent with other published literature. Effective communication of health services is an important aspect of organisational health literacy.^24–26 Communication and relationship building between patients and healthcare providers supports shared information, knowledge, and decision-making.²⁷ These critical aspects of health care support improved patient outcomes, both objective and subjective.^28,29 Good interpersonal skills allow healthcare providers to deliver faster, more efficient, and cheaper care to patients.²⁹ Exploring how this might be optimised in the southern regions is a research opportunity. Patient experience surveys are collated as part of existing administrative datasets and might be a starting point to inform organisation health literacy strategies and interpersonal communication training. The characteristics of ‘a good doctor’ have been identified previously, with communication skills seen as the key skill required by patients and strengthening communication skills training the key priority for doctors.³⁰ Communication training is an important part of the current training of NZ healthcare providers.

The theme of barriers to healthcare access identified by participants is congruent with that identified in published literature.^31–34 Improved access to PHC is a foundational step towards achieving health equity.^31–34 Research could include a focus on alternate ways of improving healthcare access and information to healthcare users, for example, extending the use of zero data platforms.³⁵ The lack of healthcare system resources and a diminishing GP workforce are well known.³⁶ Alternative ways of delivering services are already being implemented, and evaluating the impact of these systems warrants further investigation.³⁷

Quality of care was related to the type of care, cultural safety, healthcare provider competence, and availability of services. High quality health care requires cultural safety, which acknowledges the existing power imbalance between patient and doctor.^38,39 Cultural safety is necessary at both interpersonal and systemic levels to improve the health and wellbeing of all patients, but particularly tangata whenua.^38,39 NZ has an obligation under Te Tiriti to meet the health needs of Māori in a culturally safe way.^7,10

Conclusion

Research based on consultation with health populations with significant health needs within the Otago and Southland region will benefit many and support the delivery of equitable PHC. This study provided themes from a health user perspective to support future research in the primary health service area to improve health and wellbeing for our communities. Given the high level of engagement in this process, the foundation for future research and engagement is set in Southern NZ.

Supplementary material

Supplementary material is available online.