Non-invasive ventilation for people with neuromuscular disorders in Australia and New Zealand: a qualitative study of clinician perspectives.

OBJECTIVES: To explore the experiences of Australian and New Zealand clinicians with respect to care pathways, their awareness and use of non-invasive ventilation guidelines, and their perspectives on delivering quality non-invasive ventilation services to people with neuromuscular disorders. DESIGN, SETTING, PARTICIPANTS: Qualitative study; semi-structured focus groups and individual interviews with Australian and New Zealand clinicians who provide non-invasive ventilation services to people with neuromuscular disorders, recruited from participants at a 2017 sleep medicine conference. Interviews were conducted during 1 October 2017 - 31 May 2018. MAIN OUTCOME MEASURES: Major themes identified by an iterative, semantic, and inductive analysis. RESULTS: A total of 28 participants attended the four focus group sessions and five individual interviews; fourteen each from New Zealand and Australia, seventeen women and eleven men, eighteen physicians and ten other clinicians. Two major themes were identified: decision making for current practice, and resource constraints. Participants noted variable use of clinical guidelines and limited training to meet the needs of people with neuromuscular disorders who require non-invasive ventilation. They described a lack of dedicated funding, unstructured care pathways, equipment supply levels that do not meet need, low staff-to-patient ratios and staff shortages, and the inability to deliver quality multidisciplinary care. The need for clinical guidelines and service specifications was highlighted as requisite for reducing variation in clinical care. CONCLUSIONS: Systemic factors influence the needs-based provision of non-invasive ventilation for people with neuromuscular disorders. Development of clinical guidelines for Australia and New Zealand, dedicated funding for respiratory services for people with neuromuscular disorders, and specialist clinician training are important for equitable and high quality non-invasive ventilation care.

Noninvasive ventilation in New Zealand: a national prevalence survey.

BACKGROUND: Home-based noninvasive ventilation (NIV) is an effective treatment for a range of conditions that cause respiratory failure which reduces hospitalisation and mortality and improves quality of life. AIMS: To collect NIV prevalence, disease burden and equity data needed for effective national NIV health service planning. METHODS: The authors collected demographics and the primary diagnosis of patients receiving publicly funded NIV in New Zealand in 2018 by surveying all providers. National and regional prevalence rates were calculated using adult population data (aged ≥20 years) for each District Health Board region compared with a 2011 study. A subanalysis of individual-level data was used to calculate age-standardised rates by diagnostic category. RESULTS: A total of 1197 adults were receiving NIV giving a national rate of 32.9 per 100 000; almost twice the 2011 rate (16.7 per 100 000). Significant regional variations in NIV provision (4.5-84.2 per 100 000) were observed. The most frequent indications were obesity hypoventilation syndrome (OHS) (562, 47%), obstructive pathologies (335, 28%) and neuromuscular disorders (175, 15%); all have significantly increased in prevalence since 2011. Maori and Pacific peoples were significantly overrepresented among NIV users (2.24 [95% confidence interval (CI), 1.72-2.93] and 7.03 [95% CI, 5.52-8.94], respectively). The prevalence of NIV-dependent use (>15 h/day) was 4%. CONCLUSIONS: Home-based NIV provision has doubled since the previous survey, reflecting increased burden from OHS and obstructive pathologies and a disproportionate disease burden among Maori and Pacific populations. The large regional variations are concerning and highlight the urgent requirement for national service specifications, education and equipment provision. Further research is needed to address access equity.

Damp mouldy housing and early childhood hospital admissions for acute respiratory infection: a case control study.

INTRODUCTION: A gap exists in the literature regarding dose-response associations of objectively assessed housing quality measures, particularly dampness and mould, with hospitalisation for acute respiratory infection (ARI) among children. METHODS: A prospective, unmatched case-control study was conducted in two paediatric wards and five general practice clinics in Wellington, New Zealand, over winter/spring 2011-2013. Children aged <2 years who were hospitalised for ARI (cases), and either seen in general practice with ARI not requiring admission or for routine immunisation (controls) were included in the study. Objective housing quality was assessed by independent building assessors, with the assessors blinded to outcome status, using the Respiratory Hazard Index (RHI), a 13-item scale of household quality factors, including an 8-item damp-mould subscale. The main outcome was case-control status. Adjusted ORs (aORs) of the association of housing quality measures with case-control status were estimated, along with the population attributable risk of eliminating dampness-mould on hospitalisation for ARI among New Zealand children. RESULTS: 188 cases and 454 controls were studied. Higher levels of RHI were associated with elevated odds of hospitalisation (OR 1.11/unit increase (95% CI 1.01 to 1.21)), which weakened after adjustment for season, housing tenure, socioeconomic status and crowding (aOR 1.04/unit increase (95% CI 0.94 to 1.15)). The damp-mould index had a significant, adjusted dose-response relationship with ARI admission (aOR 1.15/unit increase (95% CI 1.02 to 1.30)). By addressing these harmful housing exposures, the rate of admission for ARI would be reduced by 19% or 1700 fewer admissions annually. CONCLUSIONS: A dose-response relationship exists between housing quality measures, particularly dampness-mould, and young children's ARI hospitalisation rates. Initiatives to improve housing quality and to reduce dampness-mould would have a large impact on ARI hospitalisation.

The experiences of young people with chronic illness in New Zealand: A qualitative study.

BACKGROUND: Around 10% of young people suffer from chronic health conditions, and their health care needs are different from those of children or adults. Most research about young people's chronic illness focuses on specific conditions, on younger children's experience, and on the perspectives of parents. This study explored the experiences of young people with two very different chronic conditions (asthma and cancer) and their perception of the New Zealand health system's response to their needs. METHODS: This was a collaborative research process where eight young co-researchers who had asthma or cancer were employed to work alongside the research team to develop protocols, interview peers, and assist with analysis. The challenges of this process are described in the article. Twenty-one young people between ages 15 and 27 from two urban areas of New Zealand participated in semistructured open-ended interviews about their health care experiences. Sixteen participants were female, and five male. Eleven of the participants had finished cancer treatment (with an average of 3.6 years since diagnosis), and 10 had asthma. Purposeful sampling meant that 80% of the participants with asthma were identified as Maori and the other participants identified with a range of other ethnic groups. Data were thematically coded, and coresearchers were consulted to derive the ultimate findings. RESULTS: Chronic illness disrupted the trajectory of young people's lives and had significant effects on their relationships. The New Zealand health system generally did not respond well to the needs of these young people, but many encountered extraordinary individuals who supported them effectively. The experiences of some indigenous participants indicate that health professionals require effective cultural competence training. CONCLUSIONS: This study provides insights into how young people with very different conditions experience the health system. Young people should be consulted and actively included in decision making about making health systems responsive to their diverse needs.

Is higher population-level use of ICS/LABA combination associated with better asthma outcomes? Cross-sectional surveys of nationally representative populations in New Zealand and Australia.

BACKGROUND AND OBJECTIVE: New Zealand (NZ) and Australia (AU) have similarly high asthma prevalence; both have universal public health systems, but different criteria for subsidized medicines. We explored differences in asthma management and asthma-related outcomes between these countries. METHODS: A web-based survey was administered in AU (2012) and NZ (2013) to individuals aged ≥16 years with current asthma, drawn randomly from web-based panels, stratified by national population proportions. Symptom control was assessed with the Asthma Control Test (ACT). Healthcare utilization was assessed from reported urgent doctor/hospital visits in the previous year. RESULTS: NZ (n = 537) and Australian (n = 2686) participants had similar age and gender distribution. More NZ than Australian participants used inhaled corticosteroid (ICS)-containing medication (68.8% vs 60.9%; P = 0.006) but ICS/long-acting ß2 -agonist (LABA) constituted 44.4% of NZ and 81.5% of Australian total ICS use (P < 0.0001). Adherence was higher with ICS/LABA than ICS-alone (P < 0.0001), and higher in NZ than in AU (P < 0.0001). ACT scores were similar (P = 0.41), with symptoms well controlled in 58.6% and 54.4% participants, respectively. More NZ participants reported non-urgent asthma reviews (56.6% vs 50.4%; P = 0.009). Similar proportions had urgent asthma visits (27.9% and 28.6%, respectively, P = 0.75). CONCLUSION: This comparison, which included the first nationally representative data for asthma control in NZ, showed that poorly controlled asthma is common in both NZ and AU, despite subsidized ICS-containing medications. The greater use of ICS-alone in NZ relative to ICS/LABA does not appear to have compromised population-level asthma outcomes, perhaps due to better adherence in NZ. Different ICS/LABA subsidy criteria and different patient copayments may also have contributed to these findings.

Occupational Performance Coaching for Children With Neurodisability: A Randomized Controlled Trial Protocol.

Background. Occupational Performance Coaching (OPC) is a goal-oriented approach in which client agency takes precedence in goal selection, analysis, choice of action, and evaluation of success. The intended outcomes of OPC are improved occupational performance and participation in clients' life situations. Randomized clinical trials are needed to determine the effectiveness of OPC. Purpose. This study protocol outlines a randomized controlled trial (RCT) of OPC compared to usual care with caregivers of children with neurodisability in improving child, caregiver, and family occupational performance. Method. A single-blind, 2-arm parallel-group, cluster RCT of OPC compared to usual care is planned. Therapists delivering the intervention (N = 14) are randomized to "OPC training" or "usual care" groups. The primary outcome is occupational performance improvement in caregiver (N = 84) identified goals. Implications. Findings will provide translational evidence of the effectiveness of OPC and clarify intervention processes. Areas of future OPC research and development will be indicated.

Realist process evaluation of occupational performance coaching: protocol.

INTRODUCTION: A cluster randomised controlled trial, the Meaning, Agency and Nurturing Autonomy (MANA) study, is underway comparing the effects of occupational performance coaching (OPC) and usual care on the social participation, health and well-being of children with neurodisability and their caregivers. This protocol presents the realist process evaluation which is occurring in parallel with the trial to allow testing and further refinement of OPC programme theory, as represented in its logic model. The aim of this realist evaluation is to examine what works, for whom, in the implementation of OPC with caregivers of children with neurodisability (in particular, Maori and Pasifika) in current service delivery contexts. METHODS AND ANALYSIS: Guided by OPC programme theory and realist evaluation processes, mixed-methods data collected from the MANA study OPC group will be analysed to elucidate when OPC works (outcomes), for whom, how (mechanisms) and under what circumstances (contexts). This will culminate in the synthesis of Intervention-Actor Context-Mechanism-Outcome configurations. Descriptive analyses will be reported for quantitative measures of treatment fidelity (OPC-Fidelity Measure), caregiver emotional response to OPC (Session Rating Scale) preintervention emotional state (Depression Stress and Anxiety Scale) and client outcomes (Canadian Occupational Performance Measure). Reflexive thematic analysis will be undertaken to analyse realist interviews with therapists who implemented OPC above and below fidelity thresholds and culturally focused interviews with clients of Maori or Pasifika ethnicity, informing understanding of the contexts influencing therapists' implementation of OPC with fidelity, and the mechanisms triggered within therapists or caregivers to elicit a response to the intervention. The MANA study trial outcomes will be reported separately. ETHICS AND DISSEMINATION: Ethical approval for this study was granted by the New Zealand Health and Disability Ethics Committee (20/STH/93). In all participating jurisdictions local area approval was obtained, involving a process of local Maori consultation. Results will be disseminated to all participants, and more broadly to clinicians and policy-makers through conference presentations and peer-reviewed journal publications, which will inform decision-making about resourcing and supporting effective delivery of OPC to optimise outcomes for children and caregivers. TRIAL REGISTRATION NUMBER: ACTRN12621000519853.

An indigenous approach to explore health-related experiences among Maori parents: the Pukapuka Hauora asthma study.

BACKGROUND: The prevalence of asthma for Indigenous New Zealand Maori is amongst the highest in the world. Recent evidence shows ethnic differences in asthma symptom prevalence in New Zealand have widened, with asthma symptoms and hospitalisation rates consistently higher for Maori across all age-groups, especially children and adolescents. This paper: outlines our qualitative, longitudinal research exploring the practical issues Maori children and their families face trying to achieve optimum asthma outcomes; details the research methods used within this study; and discusses the process evaluation findings of the features that made this approach successful in engaging and retaining participants in the study. METHODS: Thirty-two Maori families were recruited using a Kaupapa Maori (Maori way) Research approach. Each participated in a series of four in-depth interviews that were carried out at seasonal intervals over the course of one year. Families also took part in an interviewer-administered questionnaire and participated in a Photovoice exercise. All interviews were digitally recorded, transcribed verbatim and independently coded by two researchers. The research team then conducted the analysis and theme development. The questionnaires were analysed separately, with explanations for findings explored within the qualitative data. RESULTS: The methodology produced a 100 percent retention rate of the participating families over the course of the follow-up. This was attributed to the research collaboration, the respectful research relationships established with families, and the families' judgement that the methods used enabled them to tell their stories. The acceptability of the methodology will add to the validity and trustworthiness of the findings. CONCLUSION: Given the extent and persistence of ethnic disparities in childhood asthma management, it is imperative that an indigenous approach be taken to understanding the core issues facing Maori families. By conducting community-partnership research underpinned by an indigenous methodology, and employing a range of appropriate methods, we have successfully recruited and retained a cohort of Maori families with experiences of childhood asthma. We aim to make their voices heard in order to develop a series of culturally relevant interventions aimed at remediating these disparities.

Warm homes for older people: aims and methods of a randomised community-based trial for people with COPD.

BACKGROUND: Chronic Obstructive Pulmonary Disease (COPD) is of increasing importance with about one in four people estimated to be diagnosed with COPD during their lifetime. None of the existing medications for COPD has been shown to have much effect on the long-term decline in lung function and there have been few recent pharmacotherapeutic advances. Identifying preventive interventions that can reduce the frequency and severity of exacerbations could have important public health benefits. The Warm Homes for Elder New Zealanders study is a community-based trial, designed to test whether a NZ$500 electricity voucher paid into the electricity account of older people with COPD, with the expressed aim of enabling them to keep their homes warm, results in reduced exacerbations and hospitalisation rates. It will also examine whether these subsidies are cost-beneficial. METHODS: Participants had a clinician diagnosis of COPD and had either been hospitalised or taken steroids or antibiotics for COPD in the previous three years; their median age was 71 years. Participants were recruited from three communities between 2009 to early 2011. Where possible, participants' houses were retrofitted with insulation. After baseline data were received, participants were randomised to either 'early' or 'late' intervention groups. The intervention was a voucher of $500 directly credited to the participants' electricity company account. Early group participants received the voucher the first winter they were enrolled in the study, late participants during the second winter. Objective measures included spirometry and indoor temperatures and subjective measures included questions about participant health and wellbeing, heating, medication and visits to health professionals. Objective health care usage data included hospitalisation and primary care visits. Assessments of electricity use were obtained through electricity companies using unique customer numbers. DISCUSSION: This community trial has successfully enrolled 522 older people with COPD. Baseline data showed that, despite having a chronic respiratory illness, participants are frequently cold in their houses and economise on heating. TRIAL REGISTRATION: The clinical trial registration is http://NCT01627418.

Health System Factors Affecting the Experience of Non-Invasive Ventilation Provision of People with Neuromuscular Disorders in New Zealand.

Non-invasive ventilation (NIV) is a critical therapy for many patients with neuromuscular disorders (NMD), supporting those with respiratory failure to achieve adequate respiration and improve their quality of life. The aim of this study was to explore the experiences of access to, consent, uptake, maintenance and safe use of non-invasive ventilation by people with NMD. Semi-structured individual interviews were conducted with 11 people with NMD, each using NIV for more than 12 months. A critical realism ontological paradigm with contextualism epistemology guided the Reflexive Thematic Analysis. An Equity of Health Care Framework underpinned the analysis. Three themes were interpreted: Uptake and informed consent for NIV therapy; Practicalities of NIV; and Patient-clinician relationships. We identified issues at the system, organization and health professional levels. Conclusions: We recommend the development of national service specifications with clear standards and dedicated funding for patients with NMD and call on the New Zealand Ministry of Health to proactively investigate and monitor the variations in service delivery identified. The specific areas of concern for patients with NMD suggest the need for NMD-related NIV research and service provision responsive to the distinct needs of this population.

"Me and 'that' machine": the lived experiences of people with neuromuscular disorders using non-invasive ventilation.

PURPOSE: Neuromuscular disorders (NMD) encompasses a wide range of conditions, with respiratory weakness a common feature. Respiratory care can involve non-invasive ventilation (NIV) resulting in fewer hospital admissions, a lower mortality rate and improved quality of life. The aim of this study was to explore the 'lived experience' of NIV by people with NMD. METHODS: Interpretive Phenomenological Analysis (IPA) with semi-structured, face to face interviews with 11 people with NMD, using bi-level positive airway pressure for NIV for more than 12 months. RESULTS: Three themes were interpreted: (i) Alive, with a life; (ii) Me and 'that' machine; and (iii) Precariousness of this life. NIV enabled hope, independence and the opportunity to explore previously perceived unattainable life experiences. Yet, participants felt dependent on the machine. Furthermore, practical considerations and fear of NIV failure created a sense of precariousness to life and a reframing of personal identity. CONCLUSION: The findings highlight the broad ranging positive and negative effects that may occur for people with NMD when using this important therapy. Ongoing non-judgemental support and empathy are required from health professionals as the use of NIV challenged concepts such as 'living life well' for people with NMD. IMPLICATIONS FOR REHABILITATIONNeuromuscular disorders may result in respiratory weakness requiring non-invasive ventilation (NIV).When prescribed early, NIV can results in fewer hospital admissions, a lower mortality rate and improved quality of life.The relationship of people with NMD with their NIV machine is complex and impacts on and requires adjustment to their identity.NIV users acknowledged that NIV provided hope but simultaneously recognised the precariousness of NIV on their life.In order to better support people with NMD healthcare professionals need to better understand how the physical, psychological and social implications of NIV affect an individual's life.

Taking Charge After Acute Exacerbation of Chronic Obstructive Pulmonary Disease: A Randomized Controlled Feasibility Trial of a Psychologically Informed Self-Management Intervention.

Purpose: Few interventions improve outcomes for people with Chronic Obstructive Pulmonary Disease (COPD), particularly higher risk groups such as those admitted to hospital with an acute exacerbation of COPD (AECOPD). The aim of the study was to test the feasibility and acceptability of a modified version of the Take Charge program in people after AECOPD and to determine the potential to improve self-reported limitations, health-related quality of life and reduce future hospitalizations. Patients and Methods: A prospective, parallel group randomized trial with blinded endpoint assessment. Participants had been discharged from hospital with a diagnosis of AECOPD and were randomized to receive either a single 60-90 minute session of "Take Charge for COPD" from a trained facilitator in their own home or usual care. Take Charge is a "talking therapy" that encourages a sense of purpose, autonomy, mastery, and connectedness with others. The primary outcome was the rate of moderate or severe episodes of AECOPD in the subsequent 12 months. Results: Fifty-six people were randomized (study target 60): predominantly European (71%), female (61%), older (mean [SD] age 70 [11] years), and non-smokers (89%). Charlson Comorbidity Index mean (SD) score was 2.3 (1.6) indicating mild to moderate comorbidity severity. There were 85 moderate or severe AECOPD episodes in the 12 months after the index admission for the Take Charge participants and 84 episodes in the control group (relative rate 0.93; 95% confidence interval (CI) 0.69 to 1.26). COPD Clinical Questionnaire (CCQ) scores were significantly lower (better) in the Take Charge group (mean difference -1.26; 95% CI -2.06 to -0.45). Conclusion: The Take Charge intervention proved feasible with a population of people recently discharged from hospital with AECOPD. The direction of change in the primary outcome and some secondary outcomes suggest that an adequately powered study is justified.

Prevention of Re-Hospitalization for Acute Exacerbations: Perspectives of People with Chronic Obstructive Pulmonary Disease: A Qualitative Study.

Purpose: Current guidelines for prevention of acute exacerbation of chronic obstructive pulmonary disease (AECOPD) reflect clinical understanding of the causes of exacerbations but with a limited recognition of person-specific contributing factors. As part of a randomized trial of a person-centered intervention aiming to promote self-determination, we describe personal perspectives of those with chronic obstructive pulmonary disease (COPD) on what they saw as the causes and best ways to stay well and prevent rehospitalization after an AECOPD. Patients and Methods: Twelve participants (mean age 69.3 years, six female, six male; eight New Zealand European, two Maori, one Pacific, and one other) were interviewed about their experiences of staying well and out of hospital. Data were collected via individual semi-structured interviews one year following an index hospital admission for AECOPD and focused on the participants' views and experiences of their health condition, their beliefs about staying well, and the causes of and factors preventing further exacerbations and hospitalizations. Data were analyzed using constructivist grounded theory methods. Results: Three main themes were identified that described participants' views on what helped or hindered them to stay well and out of hospital: 1) Being Positive: The importance of having a positive mindset; 2) Being Proactive: Practical steps to reduce the risk of, and consequences from, episodes of AECOPD; and 3) Being in Control: Feeling in command of one's life and health. Each of these was affected by Being Connected: The influence of significant others, particularly close family. Conclusion: This research expands our understanding of how patients manage COPD and adds patient perspectives to current knowledge on how to prevent recurrent AECOPD. Programs which promote self-efficacy and positivity would be beneficial additions to AECOPD prevention strategies, as could the inclusion of family or significant others in wellbeing plans.

Measuring Maori Health, Wellbeing, and Disability in Aotearoa Using a Web-Based Survey Methodology.

High-quality evidence on the prevalence and impact of health, wellbeing, and disability among Maori, and other Indigenous peoples, is crucial for mitigating health inequities. Current surveys are predominantly centred within a biomedical paradigm, with the constructs mismatched with Indigenous worldviews. We aimed to develop and deploy an accessible and culturally grounded survey exploring Maori health, wellbeing, and disability using a Kaupapa Maori Research methodology. An extensive codesign process with Maori community partners interrogated all aspects of the design to ensure the process and outcomes met the needs of Maori. A large-scale, nationally representative survey of people of Maori descent was conducted. We used a multi-modal deployment approach that included online and alternate methods of completion. Our analysis included a novel dual-weighting system to ensure generalisability of results to the national Maori population. This achieved a survey of 7230 participants, a sample size comparable with government-administered surveys. The response rate was 11.1%, with 7.3% opting for alternate methods. A high completion rate of 93.4% was observed. This approach demonstrated a high level of engagement, resulting in an unprecedented collection of Maori health, wellbeing, and disability data. This highlights the importance of Indigenous codesign for ensuring accessible and culturally appropriate survey methods.

Breastfeeding protects against current asthma up to 6 years of age.

OBJECTIVE: To investigate the effects of breastfeeding on wheezing and current asthma in children 2 to 6 years of age. STUDY DESIGN: Infants (n=1105) were enrolled in a prospective birth cohort in New Zealand. Detailed information about infant feeding was collected using questionnaires administered at birth and at 3, 6, and 15 months. From this, durations of exclusive and any breastfeeding were calculated. Information about wheezing and current asthma was collected at 2, 3, 4, 5, and 6 years. Logistic regression was used to model associations between breastfeeding and outcomes with and without adjustment for confounders. RESULTS: After adjustment for confounders, each month of exclusive breastfeeding was associated with significant reductions in current asthma from 2 to 6 years (all, P<.03). Current asthma at 2, 3, and 4 years was also reduced by each month of any breastfeeding (all, P<.005). In atopic children, exclusive breastfeeding for ≥ 3 months reduced current asthma at ages 4, 5, and 6 by 62%, 55%, and 59%, respectively. CONCLUSION: Breastfeeding, particularly exclusive breastfeeding, protects against current asthma up to 6 years. Although exclusive breastfeeding reduced risk of current asthma in all children to age 6, the degree of protection beyond 3 years was more pronounced in atopic children.

Asthma, atopy and exhaled nitric oxide in a cohort of 6-yr-old New Zealand children.

BACKGROUND: Exhaled nitric oxide has been promoted as a non-invasive measure of airway inflammation, with clinical utility for the diagnosis and management of asthma. AIM: We studied associations between exhaled nitric oxide, asthma and atopy in a variety of clinically relevant phenotypes in a cohort of 6-yr-old children. METHOD: Asthma was defined using standard questionnaire criteria, atopy was measured using skin prick tests (SPT) and specific IgE to common allergens, and exhaled nitric oxide was measured using a chemiluminescence analyser according to American and European Thoracic Society criteria. RESULTS: Exhaled nitric oxide was strongly related to atopy and in particular to sensitization to house dust mites. Children with non-allergic asthma had no increase in exhaled nitric oxide compared with non-asthmatic children. Compared with children who never wheezed both late onset and persistent, wheezing was associated with increased FE(NO), while early transient wheezing was not. Elevated levels of exhaled nitric oxide amongst children with allergic asthma were almost entirely explained by their levels of specific IgE to aeroallergens, predominantly D pteronyssinus. CONCLUSION: Airway inflammation as measured by exhaled nitric oxide in young New Zealand children is related to their level of specific IgE to aeroallergens. This has implications for the utility of nitric oxide as a diagnostic and management tool in childhood asthma and for the importance of specific IgE as a marker of asthma severity.

iSelf-Help: a co-designed, culturally appropriate, online pain management programme in Aotearoa.

INTRODUCTION: Current best practice recommends group-based pain management programmes for long-term improvements in persistent pain-related disability. However, there are barriers for people to access in-person delivered pain management programmes in Aotearoa. AIMS: To develop a co-designed, culturally responsive, online group-based pain management programme (iSelf-help) for people with persistent pain. METHODS: A modified participatory action research (PAR) framework was used to co-design contents and cultural-appropriateness of iSelf-help. The PAR team included: (1) seven end-users living with persistent pain, who had previously attended an in-person delivered group pain management programme, (2) two pain management clinicians, (3) two health researchers, (4) two digital health experts, and (5) a health literacy expert. Five meetings were held with the PAR group and a Nominal Group Technique was used to rank order the preferred features of content delivery. In parallel, to ensure cultural appropriateness of iSelf-help, three focus groups (n = 15) were held with Maori (the Indigenous population of Aotearoa) living with persistent pain in collaboration with a Maori community health trust. All contents were reviewed by a Maori Health literacy expert and core contents were translated into Te Reo (Maori language). All contents were finalised by iterative discussion among the PAR team and consultation with Maori stakeholders. The preliminary version of iSelf-help was pilot tested with the PAR group participants and Maori community members living with persistent pain and their feedback was included. The iterative co-design process occurred over a period of nine months. RESULTS: The finalised version of iSelf-help included a total of 130 resources organised in to 12 content relevant online modules plus a dedicated welcoming page and an online community forum. Each module included: short videos, animations explaining main concepts, patient stories, written content to accompany visual content, podcasts of relaxation techniques, illustrated texts, and evidence-summaries. A dedicated module of videos demonstrating cardiovascular and strengthening exercises of varying intensity was also included. CONCLUSIONS: This is the first co-created, culturally appropriate, on-line group pain management programme for people with persistent pain, developed in Aotearoa. The next step is to evaluate the clinical and cost-effectiveness of iSelf-help compared to in-person delivered pain management programme.

Pain management programmes delivered in a group format are best practice to support people living with persistent non-cancer pain to live well. Some people can find accessing these programmes hard due to lack of referral, transportation costs and lack of trained health professionals. Further, people from Indigenous and non-Western backgrounds are poorly represented in these programmes despite having a high prevalence of persistent pain. One way of improving access is delivering services via technology. We aimed to co-design an online version of an existing hospital-based pain management programme (iSelf-help) and to ensure cultural appropriateness of the iSelf-help for Maori. Maori are the Indigenous population of Aotearoa (an accepted Maori word to describe New Zealand). We used a modified participatory action research (PAR) framework for our co-design process. This framework actively encouraged people with lived experience of pain and community partners to have a voice in the content design. The PAR team included: (1) seven end-users living with persistent pain, who had previously attended hospital-based pain management programme, (2) two pain management clinicians, (3) two health researchers, (4) two digital health experts, and (5) a health literacy expert. Five meetings were held with the PAR team. We used a Nominal Group Technique, whereby PAR team members ranked their preferences on content design and delivery, until concensus was reached. In parallel, three focus groups (n = 15) were held with Maori living with persistent pain in collaboration with a Maori community health trust. All contents were reviewed by a Maori Health literacy expert and core contents were translated into Te Reo (Maori language). The finalised version of iSelf-help included 130 resources, tested for accessibility, organised in to 12 online modules plus a dedicated welcoming page and an online community forum. Each module included: short videos, animations, patient stories, podcasts of relaxation techniques, illustrated texts, and evidence-summaries. This is the first co-created, culturally appropriate, on-line group pain management programme for people with persistent pain, developed in Aotearoa. We are currently evaluating if iSelf-help is acceptable to users, and clinically and cost effective as compared to the hospital-based pain management programme.

The Multidimensional Impacts of Inequities for Tangata Whaikaha Maori (Indigenous Maori with Lived Experience of Disability) in Aotearoa, New Zealand.

People with lived experience of disability have poorer health and socioeconomic outcomes than people without it. However, within this population, certain social groups are more likely to experience poorer outcomes due to the impacts of multiple intersecting forms of oppression including colonisation, coloniality and racism. This paper describes the multidimensional impacts of inequities for Indigenous tangata whaikaha Maori (Maori with lived experience of disability). Semi-structured in-depth interviews were conducted with 28 tangata whaikaha Maori and their whanau (extended family) using a kaupapa Maori Research methodology. An equity framework was used to analyse the data. The results describe: (1) inequitable access to the determinants of health and well-being; (2) inequitable access to and through health and disability care; (3) differential quality of health and disability care received; and (4) Indigenous Maori-driven solutions. These data confirm that tangata whaikaha Maori in the nation-state known as New Zealand experience racism, ableism and disablism, compounded by the intersection between these types of discrimination. Recommendations from the data support the inclusion of tangata whaikaha Maori in decision-making structures, including all policies and practices, along with equal partnership rights when it comes to designing health and disability systems and services.

Are we just dishing out pills constantly to mask their pain? Kaiawhina Maori health workers' perspectives on pain management for Maori.

AIM: To explore kaiawhina (Maori community health workers) perspectives on supporting whanau Maori with chronic pain, and to understand their views on the use of online resources for pain management. METHOD: A Maori-centred, qualitative design using focus groups as the primary data collection method. Analysis using the general inductive approach. RESULTS: Thirteen kaiawhina working in the Greater Wellington region took part in the focus groups. Four key themes were identified: (1) treatment of chronic pain in primary health relies exclusively on medication, (2) health literacy approaches to pain management are urgently required, (3) Maori have significant unmet need for culturally responsive pain management, and (4) the availability of, and referral practices to, specialist pain services are inadequate for Maori communities. CONCLUSION: Current chronic pain management was predominantly biomedical, and educational strategies lack health literacy approaches. Primary health services exclude traditional Maori methods of treating chronic pain and do not focus on whanau wellbeing. The lack of referral for Maori to specialist services highlights the existing health inequities for Maori. Developing new initiatives (both in-person and online) to address chronic pain management for Maori must be Maori-led and co-designed with whanau to result in holistic solutions for Maori.

Clinical and cost-effectiveness of an online-delivered group-based pain management programme in improving pain-related disability for people with persistent pain-protocol for a non-inferiority randomised controlled trial (iSelf-help trial).

INTRODUCTION: Persistent non-cancer pain affects one in five adults and is more common in Maori-the Indigenous population of New Zealand (NZ), adults over 65 years, and people living in areas of high deprivation. Despite the evidence supporting multidisciplinary pain management programmes (PMPs), access to PMPs is poor due to long waiting lists. Although online-delivered PMPs enhance access, none have been codesigned with patients or compared with group-based, in-person PMPs. This non-inferiority trial aims to evaluate the clinical and cost-effectiveness of a cocreated, culturally appropriate, online-delivered PMP (iSelf-help) compared with in-person PMP in reducing pain-related disability. METHODS AND ANALYSIS: Mixed-methods, using a modified participatory action research (PAR) framework, involving three phases. Phase I involved cocreation and cultural appropriateness of iSelf-help by PAR team members. Phase II: The proposed iSelf-help trial is a pragmatic, multicentred, assessor-blinded, two-arm, parallel group, non-inferiority randomised controlled trial. Adults (n=180, age ≥18 years) with persistent non-cancer pain eligible for a PMP will be recruited and block randomised (with equal probabilities) to intervention (iSelf-help) and control groups (in-person PMP). The iSelf-help participants will participate in two 60-minute video-conferencing sessions weekly for 12 weeks with access to cocreated resources via smartphone application and a password-protected website. The control participants will receive group-based, in-person delivered PMP. Primary outcome is pain-related disability assessed via modified Roland Morris Disability Questionnaire at 6 months post intervention. Secondary outcomes include anxiety, depression, stress, pain severity, quality of life, acceptance, self-efficacy, catastrophising and fear avoidance. Data will be collected at baseline, after the 12-week intervention, and at 3 and 6 months post intervention. We will conduct economic analyses and mixed-method process evaluations (Phase IIA). ETHICS AND DISSEMINATION: The Health and Disability Ethics Committee approved the study protocol (HDEC18/CEN/162). Phase III involves dissemination of findings guided by the PAR team as outcomes become apparent. TRIAL REGISTRATION NUMBER: ACTRN 12619000771156.