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.

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.

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.

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.

Whakawhanaungatanga: the importance of culturally meaningful connections to improve uptake of pulmonary rehabilitation by Maori with COPD - a qualitative study.

BACKGROUND: Pulmonary rehabilitation is known to improve function and quality of life for people with chronic obstructive pulmonary disease (COPD). However, little research has been conducted on the influence of culture on experiences of pulmonary rehabilitation. This study examined factors influencing uptake of pulmonary rehabilitation by Maori with COPD in New Zealand. METHOD: Grounded theory nested within kaupapa Maori methodology. Transcripts were analyzed from interviews and focus groups with 15 Maori and ten New Zealand non-Maori invited to attend pulmonary rehabilitation for COPD. Maori participants had either attended a mainstream hospital-based program, a community-based program designed "by Maori, for Maori", or had experienced both. RESULTS: Several factors influencing uptake of pulmonary rehabilitation were common to all participants regardless of ethnicity: 1) participants' past experiences (eg, of exercise; of health care systems), 2) attitudes and expectations, 3) access issues (eg, time, transport, and conflicting responsibilities), and 4) initial program experiences. These factors were moderated by the involvement of family and peers, interactions with health professionals, the way information on programs was presented, and by new illness events. For Maori, however, several additional factors were also identified relating to cultural experiences of pulmonary rehabilitation. In particular, Maori participants placed high value on whakawhanaungatanga: the making of culturally meaningful connections with others. Culturally appropriate communication and relationship building was deemed so important by some Maori participants that when it was absent, they felt strongly discouraged to attend pulmonary rehabilitation. Only the more holistic services offered a program in which they felt culturally safe and to which they were willing to return for ongoing rehabilitation. CONCLUSION: Lack of attention to cultural factors in the delivery of pulmonary rehabilitation may be a barrier to its uptake by indigenous, minority ethnic groups, such as New Zealand Maori. Indigenous-led or culturally responsive health care interventions for COPD may provide a solution to this issue.

Coeliac disease and gluten avoidance in New Zealand children.

OBJECTIVES: Although gluten avoidance is thought to be common among New Zealanders, the prevalence of gluten avoidance and of actual coeliac disease (CD) in children is uncertain. Our aims were: (1) to determine the prevalence of doctor-diagnosed CD and of gluten avoidance in New Zealand children; and (2) among children without CD, to identify independent predictors of gluten avoidance. DESIGN: The New Zealand Asthma and Allergy Cohort Study has detailed information on participants' demographic, pregnancy-related and neonatal factors. The authors surveyed parents regarding their child's history of lactose intolerance and gluten-related issues (eg, gluten avoidance, history of wheat or gluten allergy in first degree relatives, testing and doctor diagnosis of CD). After excluding children with doctor-diagnosed CD, the authors identified independent predictors of gluten avoidance. RESULTS: Among 916 children, most (78%) were of European ethnicity. The authors identified nine (1.0%, 95% CI 0.5% to 1.9%) who had doctor-diagnosed CD, while 48 (5.2%, 95% CI 4.0% to 6.9%) avoided gluten. Among children without diagnosed CD, significant independent predictors for gluten avoidance were Christchurch site (OR 2.2, 95% CI 1.02 to 4.7), prior testing for CD (OR 9.0, 95% CI 4.1 to 19.5) and doctor-diagnosed lactose intolerance (OR 5.2, 95% CI 2.0 to 13.9). CONCLUSIONS: CD affected 1% of these New Zealand children, but 5% reported gluten avoidance. The predictors of gluten avoidance in children without doctor-diagnosed CD suggest important regional differences in community belief or medical practice regarding implementation of gluten avoidance and the contributory role of non-specific subjective abdominal complaints.