Flourishing together: research protocol for developing methods to better include disabled people's knowledge in health policy development.

BACKGROUND: To positively impact the social determinants of health, disabled people need to contribute to policy planning and programme development. However, they report barriers to engaging meaningfully in consultation processes. Additionally, their recommendations may not be articulated in ways that policy planners can readily use. This gap contributes to health outcome inequities. Participatory co-production methods have the potential to improve policy responsiveness. This research will use innovative methods to generate tools for co-producing knowledge in health-related policy areas, empowering disabled people to articulate experience, expertise and insights promoting equitable health policy and programme development within Aotearoa New Zealand. To develop these methods, as an exemplar, we will partner with both tangata whaikaha Maori and disabled people to co-produce policy recommendations around housing and home (kainga)-developing a nuanced understanding of the contexts in which disabled people can access and maintain kainga meeting their needs and aspirations. METHODS: Participatory co-production methods with disabled people, embedded within a realist methodological approach, will develop theories on how best to co-produce and effectively articulate knowledge to address equitable health-related policy and programme development-considering what works for whom under what conditions. Theory-building workshops (Phase 1) and qualitative surveys (Phase 2) will explore contexts and resources (i.e., at individual, social and environmental levels) supporting them to access and maintain kainga that best meets their needs and aspirations. In Phase 3, a realist review with embedded co-production workshops will synthesise evidence and co-produce knowledge from published literature and non-published reports. Finally, in Phase 4, co-produced knowledge from all phases will be synthesised to develop two key research outputs: housing policy recommendations and innovative co-production methods and tools empowering disabled people to create, synthesise and articulate knowledge to planners of health-related policy. DISCUSSION: This research will develop participatory co-production methods and tools to support future creation, synthesis and articulation of the knowledge and experiences of disabled people, contributing to policies that positively impact their social determinants of health.

A national survey of pharmacists and interns in Aotearoa New Zealand: provision and views of extended services in community pharmacies.

BACKGROUND: Changes in pharmacy models of care, services and funding have been occurring internationally, moving away from the traditional dispensing role to more extended patient-facing roles utilising pharmacists' clinical skills. This study aimed to identify the extended services offered by community pharmacy in Aotearoa New Zealand and the barriers and facilitators to extended services provision. The study is unique in that it includes intern (pre-registration) pharmacists. METHODS: An online survey, conducted in 2018, of all pharmacists and intern (pre-registration) pharmacists working in a community pharmacy. Data were analysed using descriptive statistics and regression analyses. RESULTS: The results are based on replies from 553 community pharmacists and 59 intern pharmacists (response rate: 19 and 26% respectively). Both pharmacists (83%) and interns (85%) want to work at the top of their scope of practice. Wide variation exists in the specific services individual pharmacists offer. Most pharmacists were accredited to supply the emergency contraceptive pill (95%), sildenafil for erectile dysfunction (86%) and trimethoprim for uncomplicated urinary tract infection (85%). Fewer were able to immunise (34%) or to supply selected oral contraceptives (44%). Just under a quarter could provide a Medicines Use Review (MUR) or Community Pharmacy Anticoagulation Management Service (CPAMS). Of the pharmacists not already accredited, 85% intended to gain accreditation to supply selected oral contraceptives, 40% to become vaccinators, 37% to offer CPAMS and 30% MUR. Interns expressed strong interest in becoming accredited for all extended services. Poisson regression analyses showed key factors supporting the likelihood of providing extended services were owner and management support and appropriate space and equipment. Being excited about the opportunities in community pharmacy, having employer funding and time for training and sufficient support staff were also statistically significant. CONCLUSIONS: Pharmacists need time and a supportive management structure to enable them to deliver extended services. Health policy with a greater strategic emphasis on funding services and pharmacist training, and developing technician support roles, will help to minimise or eliminate some of the barriers to role expansion both in Aotearoa New Zealand and internationally.

A realist evaluation of the development of extended pharmacist roles and services in community pharmacies.

BACKGROUND: Internationally, community pharmacy models of care have been moving away from a focus on dispensing to extended, clinically-focused roles for pharmacists. OBJECTIVES: To identify how community pharmacy strategies were being implemented in Aotearoa New Zealand; how changes were expected to influence health and health system outcomes; what extended services were being delivered; the responses of pharmacists, other health professionals and consumers to these developments; and the contexts and mechanisms supporting the successful implementation of new community pharmacy services. METHODS: A realist evaluation methodology was employed, to explore a complex policy intervention. Realist evaluation explores the contexts (C) within which initiatives are introduced and identifies the mechanisms (M) triggered by different contexts to produce outcomes (O). Realist evaluation processes iteratively develop, test, and refine CMO configurations. In this study, initial programme theories were developed through key government and professional policy documents, then refined through key informant interviews, a survey and interviews with pharmacists and intern (pre-registration) pharmacists, and finally, 10 case studies of diverse community pharmacies. RESULTS: Four intermediate health service outcomes were identified: development of extended community pharmacist services; consumers using extended community pharmacist services; more integrated, collaborative primary health care services; and a fit-for-purpose community pharmacy workforce. Enabling and constraining contexts are detailed for each outcome, along with the mechanisms that they trigger (or inhibit). CONCLUSIONS: There are wide-ranging and disparate levers to support the further development of extended community pharmacy services. These include aligning funding with desired services, undergraduate educators and professional leaders setting expectations for the pharmacists' role in practice, and the availability of sufficient funding and time for both specific extended service accreditation and broader postgraduate training. However, no simple "fix" can be universally applied internationally, nor even in pharmacies within a single jurisdiction, to facilitate service development.

Enacting Mana Maori Motuhake during COVID-19 in Aotearoa (New Zealand): "We Weren't Waiting to Be Told What to Do".

Maori, the Indigenous people of Aotearoa (New Zealand), were at the centre of their country's internationally praised COVID-19 response. This paper, which presents the results of qualitative research conducted with 27 Maori health leaders exploring issues impacting the effective delivery of primary health care services to Maori, reports this response. Against a backdrop of dominant system services closing their doors or reducing capacity, iwi, hapu and ropu Maori ('tribal' collectives and Maori groups) immediately collectivised, to deliver culturally embedded, comprehensive COVID-19 responses that served the entire community. The results show how the exceptional and unprecedented circumstances of COVID-19 provided a unique opportunity for iwi, hapu and ropu Maori to authentically activate mana motuhake; self-determination and control over one's destiny. Underpinned by foundational principles of transformative Kaupapa Maori theory, Maori-led COVID-19 responses tangibly demonstrated the outcomes able to be achieved for everyone in Aotearoa when the wider, dominant system was forced to step aside, to be replaced instead with self-determining, collective, Indigenous leadership.

Cohort profile: Nga Kawekawe o Mate Korona | Impacts of COVID-19 in Aotearoa - a prospective, national cohort study of people with COVID-19 in New Zealand.

PURPOSE: The COVID-19 pandemic has had significant health, social and economic impacts around the world. We established a national, population-based longitudinal cohort to investigate the immediate and longer-term physical, psychological and economic impacts of COVID-19 on affected people in Aotearoa New Zealand (Aotearoa), with the resulting evidence to assist in designing appropriate health and well-being services for people with COVID-19. PARTICIPANTS: All people residing in Aotearoa aged 16 years or over, who had a confirmed or probable diagnosis of COVID-19 prior to December 2021, were invited to participate. Those living in dementia units were excluded. Participation involved taking part in one or more of four online surveys and/or in-depth interviews. The first wave of data collection took place from February to June 2022. FINDINGS TO DATE: By 30 November 2021, of 8735 people in Aotearoa aged 16+ who had COVID-19, 8712 were eligible for the study and 8012 had valid addresses so were able to be contacted to take part. A total of 990 people, including 161 Tangata Whenua (Maori, Indigenous peoples of Aotearoa) completed one or more surveys; in addition, 62 took part in in-depth interviews. Two hundred and seventeen people (20%) reported symptoms consistent with long COVID. Key areas of adverse impacts were experiences of stigma, mental distress, poor experiences of health services and barriers to healthcare, each being significantly more pronounced among disabled people and/or those with long COVID. FUTURE PLANS: Further data collection is planned to follow-up cohort participants. This cohort will be supplemented by the inclusion of a cohort of people with long COVID following Omicron infection. Future follow-ups will assess longitudinal changes to health and well-being impacts, including mental health, social, workplace/education and economic impacts of COVID-19.

Consequences of barriers to primary health care for children in Aotearoa New Zealand.

Inequities in the provision of accessible primary health care contribute to poor health outcomes and health inequity. This study evaluated inequities in the prevalence and consequences of barriers that children face in seeing a general practitioner (GP) in Aotearoa New Zealand. We analysed data on 5,947 children from the Growing Up in New Zealand longitudinal study cohort on barriers to seeing a GP in the previous year, reported by mothers when their children were aged 24 months and 54 months (in 2011/12 and 2013/14 respectively); and maternal-reported hospitalisations in the year prior to age 54 months. We used logistic regression to estimate odds ratios (OR) and 95% confidence intervals (CIs) for consequences of these barriers. Overall, 4.7% (n = 279) of children experienced barriers to seeing a GP in the year to 24 months and 5.5% (n = 325) in the year to 54 months. At each age, and for each specific barrier studied, barriers were more prevalent among Maori (the indigenous people of Aotearoa New Zealand), and among Pacific, compared to New Zealand European, children. Children facing barriers in the year to age 24 months were twice as likely to be hospitalised in the year to 54 months (OR 2.18, 95%CI: 1.38 to 3.44). When this relationship was analysed by ethnicity, the association was strongest for Maori (OR: 2.92, 95%CI: 1.60 to 5.30), less strong for Pacific (OR 2.01, 95%CI: 0.92 to 4.37) and not present for New Zealand European (OR 1.27, 95%CI 0.39 to 4.12) families. Barriers that children face to seeing a GP have social and cost implications for families and the health system. Changes to the health system, and future health policy, must align with the New Zealand government's obligations under Te Tiriti o [The Treaty of] Waitangi, to ensure that health equity becomes a reality for Maori.

Association Between High-Need Education-Based Funding and School Suspension Rates for Autistic Students in New Zealand.

Importance: Autistic students often experience poor educational outcomes that have implications for later life, including unemployment, interactions with the criminal justice system, increased risk for substance abuse, and low socioeconomic status. Improving educational outcomes is critical for ensuring that autistic young people can reach their potential. Objective: To quantify differences in suspension rates between autistic and nonautistic students and to assess whether high-need education-based funding for autistic students is associated with reduced rates of school suspension. Design, Setting, and Participants: This national cohort study used linked health and education data from New Zealand's Integrated Data Infrastructure. Data were obtained for students aged 5 to 16 years from January 1 to December 31, 2018, and analyzed July 7, 2021, to January 1, 2022. A novel case identification method was used to identify autistic students. Exposures: High-need education-based funding (Ongoing Resourcing Scheme [ORS]) obtained before 2019. Main Outcomes and Measures: Rates of suspension from school. Crude and adjusted analyses of the association between suspension rates and autism among the full population with adjustment made for sociodemographic characteristics (sex, age, ethnicity, deprivation, and urban or rural profile of residence) were conducted using complete-case, 2-level random intercept logistic multivariable regressions. To assess the association between ORS funding and suspension, analysis was restricted to autistic students. Results: Of the 736 911 students in the study population, 9741 (1.3%) were identified as autistic (median [SD] age, 10 [3.2] years; 7710 [79.1%] boys), and 727 170 (98.7%) as nonautistic (median [SD] age, 10 [3.4] years; 369 777 [50.9%] boys). School suspension was experienced by 504 autistic students (5.2%) and 13 845 nonautistic students (1.9%). After adjustment for demographic characteristics, autistic students had significantly higher odds of suspension than their nonautistic peers (adjusted odds ratio, 2.81; 95% CI, 2.55-3.11). Of the 9741 autistic students, 2895 (29.7%) received high-need education-based (ORS) funding. Suspensions were experienced by 57 autistic students (2.0%) with high-need funding and 447 autistic students (6.5%) without high-need funding. After adjustment for demographic characteristics, co-occurring conditions, and level of disability support need, autistic students with high-need funding had significantly lower odds of suspension than autistic students without high-need funding (adjusted odds ratio, 0.29; 95% CI, 0.21-0.40). Conclusions and Relevance: In this cohort study, the findings of disparities in suspension rates between autistic and nonautistic students underscore the challenges faced in providing inclusive education for all young people, regardless of disability status. This study found that high-need funding was associated with reduced suspension rates among autistic students, suggesting that if appropriate supports are afforded to autistic students, a more inclusive education can be provided.

Criminal justice system interactions among young adults with and without autism: A national birth cohort study in New Zealand.

LAY ABSTRACT: Sensationalist headlines and highly publicised criminal cases lead many in the public to believe that people with autism are more likely to engage in criminal behaviour. However, recent studies present an unresolved debate, and indicate this may not necessarily be the case. The aims of this study were to examine the prevalence of criminal justice system interactions among young adults with and without autism, and determine whether offence types differ between these groups. We tracked a national birth cohort until their 25th birthday, detecting criminal justice system interactions from age 17 onwards. Linked health and criminal justice system data were used to identify those with autism and detect interactions with the criminal justice system. We found that young people with autism interacted with the criminal justice system at lower rates compared to those without autism. However, there were considerable differences in the types of offences these young people were charged with. For example, among those charged with an offence, people with autism were more likely to be charged with a serious offence, punishable by 2 or more years in prison. We conclude that although young people with autism are not over-represented in the criminal justice system, disparities in offence types and incarceration rates among those charged with an offence suggest the importance of identification and appropriate response to autism within the criminal justice system.

Autism spectrum disorder/Takiwatanga: An Integrated Data Infrastructure-based approach to autism spectrum disorder research in New Zealand.

LAY ABSTRACT: New Zealand has few estimates of the prevalence autism spectrum disorder and no national registry or data set to identify and track cases. This hinders the ability to make informed, evidence-based decisions relating to autism spectrum disorder. In this study, we utilised linked health and non-health data to develop a method for identifying cases of autism spectrum disorder among children and young people in New Zealand. In addition, we examined rates of co-occurring mental health, neurodevelopmental and related conditions among this cohort and compared these to the general population. The method identified almost 10,000 children and young people with autism spectrum disorder in New Zealand. Co-occurring mental health or related problems were found in over 68% of this group (nearly seven times higher than the general population), and around half were identified with multiple co-occurring conditions. The most frequently identified conditions were intellectual disability, disruptive behaviours and emotional problems. We have developed a useful method for monitoring service and treatment-related trends, number and types of co-occurring conditions and examining social outcomes among individuals with autism spectrum disorder. While the method may underestimate the prevalence of autism spectrum disorder in New Zealand, it provides a significant step towards establishing a more comprehensive evidence base to inform autism spectrum disorder-related policy.

Equity in access to zero-fees and low-cost Primary Health Care in Aotearoa New Zealand: Results from repeated waves of the New Zealand Health Survey, 1996-2016.

Primary Health Care in Aotearoa New Zealand is mainly funded through capitation-based funding to general practices, supplemented by a user co-payment. Funding is designed in part to keep the costs of care low for key groups in the population who have higher health needs. We investigated changes in the socio-demographic determinants of no-cost and low-cost access to Primary Health Care using data from sequential waves of the New Zealand Health Survey (1996/97-2016/17). Fees paid were self-reported and inflated using CPI-adjustment to the value of the 2018NZD. Over the 20-year study period, there was an increase in the population accessing low-cost care. Access to low-cost care was particularly high for Pacific people, but also higher for Maori and Asian people compared to Other/New Zealand European ethnicities. Area-level deprivation was a stronger predictor of access to low-cost care for non-Maori than for Maori. Although Maori were more likely than non-Maori to access low-cost care at all levels of deprivation, this was less evident in more deprived compared to more affluent areas. Given ongoing reported inequity for Maori being less able to afford primary health care, we suggest that future policies to improve access should be fully aligned with the articles of Te Tiriti o Waitangi and should focus on equity.

Taking the pulse of the health services research community: a cross-sectional survey of research impact, barriers and support.

Objective This study reports on the characteristics of individuals conducting health service research (HSR) in Australia and New Zealand, the perceived accessibility of resources for HSR, the self-reported impact of HSR projects and perceived barriers to conducting HSR. Methods A sampling frame was compiled from funding announcements, trial registers and HSR organisation membership. Listed researchers were invited to complete online surveys. Close-ended survey items were analysed using basic descriptive statistics. Goodness of fit tests determined potential associations between researcher affiliation and access to resources for HSR. Open-ended survey items were analysed using thematic analysis. Results In all, 424 researchers participated in the study (22% response rate). Respondents held roles as health service researchers (76%), educators (34%) and health professionals (19%). Most were employed by a university (64%), and 57% held a permanent contract. Although 63% reported network support for HSR, smaller proportions reported executive (48%) or financial (26%) support. The least accessible resources were economists (52%), consumers (49%) and practice change experts (34%); researchers affiliated with health services were less likely to report access to statisticians (P<0.001), economists (P<0.001), librarians (P=0.02) and practice change experts (P=0.02) than university-affiliated researchers. Common impacts included conference presentations (94%), publication of peer-reviewed articles (87%) and health professional benefits (77%). Qualitative data emphasised barriers such as embedding research culture within services and engaging with policy makers. Conclusions The data highlight opportunities to sustain the HSR community through dedicated funding, improved access to methodological expertise and greater engagement with end-users. What is known about the topic? HSR faces several challenges, such as inequitable funding allocation and difficulties in quantifying the effects of HSR on changing health policy or practice. What does this paper add? Despite a vibrant and experienced HSR community, this study highlights some key barriers to realising a greater effect on the health and well-being of Australian and New Zealand communities through HSR. These barriers include limited financial resources, methodological expertise, organisational support and opportunities to engage with potential collaborators. What are the implications for practitioners? Funding is required to develop HSR infrastructure, support collaboration between health services and universities and combine knowledge of the system with research experience and expertise. Formal training programs for health service staff and researchers, from short courses to PhD programs, will support broader interest and involvement in HSR.

Widening participation of Maori and Pasifika students in health careers: evaluation of two health science academies.

Objective The aim of the present study was to evaluate the short-term outcomes of two health science academies established by a district health board in South Auckland, New Zealand, to create a health workforce pipeline for local Maori and Pasifika students. Methods A mixed-methods approach was used, involving background discussions with key informants to generate an initial logic model of how the academies work, followed by secondary analysis of students' records relating to retention and academic achievement, a survey of senior academy students' interest in particular health careers and face-to-face interviews and focus groups with students, families and teachers. Results Academy students are collectively achieving better academic results than their contemporaries, although selection decisions are likely to contribute to these results. Academies are retaining students, with over 70% of students transitioning from Year 11 to Years 12 and 13. Senior students are expressing long-term ambitions to work in the health sector. Conclusions Health science academies show promise as an innovative approach to supporting Maori and Pasifika students prepare for a career in the health professions. Evaluating the long-term outcomes of the academies is required to determine their contribution to addressing inequities in the local health workforce. What is known about the topic? Despite progress in health workforce participation for underrepresented indigenous and ethnic minority groups in New Zealand, significant disparities persist. Within this context, a workforce development pipeline that targets preparation of secondary school students is recommended to address identified barriers in the pursuit of health careers. What does this paper add? We provide an evaluation of an innovative district health board initiative supporting high school students that is designed to ensure their future workforce is responsive to the needs of the local community. What are the implications for practitioners? The findings have implications for decision makers in health workforce planning regarding the benefits of investing at an early stage of the workforce development pipeline in order to build an equitable and diverse health professions workforce.

Corrigendum to: Widening participation of Maori and Pasifika students in health careers: evaluation of two health science academies.

Objective The aim of the present study was to evaluate the short-term outcomes of two health science academies established by a district health board in South Auckland, New Zealand, to create a health workforce pipeline for local Maori and Pasifika students.Methods A mixed-methods approach was used, involving background discussions with key informants to generate an initial logic model of how the academies work, followed by secondary analysis of students' records relating to retention and academic achievement, a survey of senior academy students' interest in particular health careers and face-to-face interviews and focus groups with students, families and teachers.Results Academy students are collectively achieving better academic results than their contemporaries, although selection decisions are likely to contribute to these results. Academies are retaining students, with over 70% of students transitioning from Year 11 to Years 12 and 13. Senior students are expressing long-term ambitions to work in the health sector.Conclusions Health science academies show promise as an innovative approach to supporting Maori and Pasifika students prepare for a career in the health professions. Evaluating the long-term outcomes of the academies is required to determine their contribution to addressing inequities in the local health workforce.What is known about the topic? Despite progress in health workforce participation for underrepresented indigenous and ethnic minority groups in New Zealand, significant disparities persist. Within this context, a workforce development pipeline that targets preparation of secondary school students is recommended to address identified barriers in the pursuit of health careers.What does this paper add? We provide an evaluation of an innovative district health board initiative supporting high school students that is designed to ensure their future workforce is responsive to the needs of the local community.What are the implications for practitioners? The findings have implications for decision makers in health workforce planning regarding the benefits of investing at an early stage of the workforce development pipeline in order to build an equitable and diverse health professions workforce.

Deaf New Zealand Sign Language users' access to healthcare.

AIMS: The research described was undertaken as part of a Sub-Regional Disability Strategy 2017-2022 across the Wairarapa, Hutt Valley and Capital and Coast District Health Boards (DHBs). The aim was to investigate deaf New Zealand Sign Language (NZSL) users' quality of access to health services. Findings have formed the basis for developing a 'NZSL plan' for DHBs in the Wellington sub-region. METHODS: Qualitative data was collected from 56 deaf participants and family members about their experiences of healthcare services via focus group, individual interviews and online survey, which were thematically analysed. Contextual perspective was gained from 57 healthcare professionals at five meetings. Two professionals were interviewed, and 65 staff responded to an online survey. A deaf steering group co-designed the framework and methods, and validated findings. RESULTS: Key issues reported across the health system include: inconsistent interpreter provision; lack of informed consent for treatment via communication in NZSL; limited access to general health information in NZSL and the reduced ability of deaf patients to understand and comply with treatment options. This problematic communication with NZSL users echoes international evidence and other documented local evidence for patients with limited English proficiency. CONCLUSION: Deaf NZSL users face multiple barriers to equitable healthcare, stemming from linguistic and educational factors and inaccessible service delivery. These need to be addressed through policy and training for healthcare personnel that enable effective systemic responses to NZSL users. Deaf participants emphasise that recognition of their identity as members of a language community is central to improving their healthcare experiences.

The road we travel: Maori experience of cancer.

AIM: This research explores Maori experiences of cancer. It does so to shed light on the causes of cancer inequalities for Maori. METHODS: The views of 44 Maori affected by cancer--including patients, survivors, and their whanau (extended families)--were gathered in five hui (focus groups) and eight interviews in the Horowhenua, Manawatu, and Tairawhiti districts of New Zealand. After initial analysis, a feedback hui was held to validate the findings. RESULTS: Maori identified effective providers of cancer services such as Maori health providers. They also identified positive and negative experiences with health professionals. The involvement of whanau in the cancer journey was viewed as highly significant as was a holistic approach to care. Participants had many suggestions for improvements to cancer services such as better resourcing of Maori providers, cultural competence training for all health workers, the use of systems 'navigators', and the inclusion of whanau in the cancer control continuum. CONCLUSION: The research identifies a range of health system, healthcare process, and patient level factors that contribute to inequalities in cancer for Maori. It also explores the role of racism as a root cause of these inequalities and calls for urgent action.

Perceptions of Maori deaf identity in New Zealand.

Following the reframing of "Deaf" as a cultural and linguistic identity, ethnic minority members of Deaf communities are increasingly exploring their plural identities in relation to Deaf and hearing communities of affiliation. This article examines Maori Deaf people's perceptions of identity, during a coinciding period of Tino Rangatiratanga (Maori cultural and political self-determination and empowerment)1 and the emergence of Deaf empowerment. Interviews with 10 Maori Deaf participants reveal experiences of enculturation into Maori and Deaf communities and how they negotiate identity in these contexts. Consistent with the model of contextual identity in Deaf minority individuals of Foster and Kinuthia (2003), participants expressed fluid identities, in which Maori and Deaf aspects are both central but foregrounded differently in their interactions with hearing Maori, Deaf Maori, and the wider Deaf community. This New Zealand case study illustrates how changing sociopolitical conditions affect Deaf minority individuals' opportunity to achieve and express identification with both Deaf-world and family heritage cultures.