He/She/They - gender inclusivity in developing and using health-related questionnaires: a scoping review.

PURPOSE: To ensure the recognition and participation of all potential respondents in health research, surveys and care, including LGBTQIA + broadly, and trans people, specifically, the use of inclusive language should be considered. This scoping review aimed to identify and describe strategies considered for gender inclusivity in development and use of health questionnaires and Patient Reported Outcomes Measures (PROMs). METHODS: A systematic search of peer reviewed publications between January 2000 and September 2022 was conducted in Scopus, ProQuest Central, Ovid Medline (PubMed and EBSCO). Two reviewers independently screened identified publications titles and abstracts, followed by full text screening and data extraction from eligible articles. RESULTS: The search of over 5000 publications, retained 18; most acknowledged gaps in representation and advocated for gender-inclusive language. Eight articles discussed exclusion from health care and health research for gender minority groups due to the use of gendered language. Improved reliability, validity and response rates were associated with the use of gender-neutral language in seven articles. Only one article reported finding irritation among cisgender males when non-binary gender response options were used. One paper, focussing on instruments for Rheumatoid Arthritis, discussed gaps in representation if diverse gender identities were not considered when developing PROMs. CONCLUSION: This scoping review points to the importance of adopting gender-inclusive language in health questionnaires and surveys to reduce the risk of excluding gender minority groups. Despite finding very few specific examples of how others have used gender-inclusive language in health questionnaires, many strengths of gender-inclusive language usage were identified.

People from the LGBTQIA + communities are often excluded from health research and from completing heath surveys as they are not able to identify with the questions about male or female genders. This scoping review aimed to examine the literature for any strategies developers of health questionnaires may have come up with to ensure inclusion of all demographic groups. Most of the identified literature highlights the importance of adopting gender-inclusive language in health questionnaires to reduce the risk of excluding gender minority groups. Despite many strengths of gender-inclusive language usage being identified, only a few specific examples were identified of how others have used gender-inclusive language in health questionnaires.

'Barely keeping the wheels on the trolley': A qualitative study of the New Zealand COVID Tracer App.

Digital contact tracing apps were developed to help control the spread of COVID-19 but research exploring these apps has underrepresented both 'at-risk' communities and contact tracers. Our study examines perspectives of the New Zealand COVID Tracer app among 53 participants, comprising policy advisors, contact tracers, and Maori, Pacific, and disability stakeholders, underpinned by the theory of social construction of which positions technology within the social context in which it evolves, operates, and is negotiated. Although community stakeholders believed the app helped safeguard communities from COVID-19, the health officials' views on the app's usefulness in contact tracing varied. Participants who oversaw the app's technical development generally perceived it as being more useful, particularly regarding Bluetooth proximity detection, in contrast with contact tracers' perceptions. The findings highlight a disconnection between public sentiment and operational reality in the use of the app and the need for improved collaboration and consultation in future contact tracing responses.

"On the books" yet "off the record"-occupational injury and migrant women: scoping review findings from OECD countries, with implications for New Zealand.

Introduction: Little appears to be known regarding the work-related injury (WRI) experiences of migrants (those born in a country other than their identified host country) and specifically, women migrants. Methods: As part of a wider PhD project investigating the WRI experiences of New Zealand (NZ) migrants, a review of NZ mainstream media coverage of migrants WRIs was undertaken, which identified no representations of migrant women's WRI experiences. In turn, a scoping review was undertaken to identify peer-reviewed publications reporting empirical findings about WRI experiences and outcomes for migrants in Organization for Economic Co-operation and Development (OECD) member countries, including NZ. This paper aims to identify and describe findings for migrant women specifically. From 2,243 potential publications, 383 proceeded to full text review; ultimately 67 were retained. These 67 publications were reviewed to identify findings specifically for occupationally injured migrant women; 22 such publications (from 21 studies) were found. This paper reports: the characteristics of identified studies; characteristics of migrant women within; frameworks and theories used, and knowledge (and gaps) related to occupationally injured migrant women. Results: Publications came from only four OECD countries, the United States, Canada, Australia, and Spain. A range of study designs, and topic areas (working conditions, legal rights, identities, the role of gatekeepers, and precarity), were identified; however, only three studies reported findings for longer-term experiences and outcomes of WRIs. Nine publications considered theoretical models underpinning research, including theories about precarious work, stigmatization, and citizenship. However, there was a paucity of analyses of the WRI experience throughout the life-course, highlighting a gap in understanding of how these experiences are "lived" over the long term by occupationally injured migrant women. Discussion: Scoping review findings were synthesized using a provisional "matryoshka framing narrative" model, to be refined through forthcoming qualitative interviews with occupationally injured NZ migrant women. This model highlights the multitude of influences in WRI experiences, potentially specific to migrant women, suggesting the consequences of WRIs may be uneven, with migrant women experiencing different, and potentially, greater disparities in outcomes. These findings provide an impetus to investigate knowledge gaps and urgently address potential disparities in WRI outcomes for migrant women specifically.

'Two heads are better than one'-exploring the experiences of Ghanaian communities on the role of patient and public participation in health system improvement.

Patient and Public Participation (PPP) is key to improving health systems. Yet, studies have shown that PPP implementations across many countries have been largely tokenistic. Particularly, in Ghana, whilst PPP is prioritized in national health policies and legislation, there appears to be little research focused on understanding PPP's role in health system improvement. The aim of this study, therefore, is to examine how PPP is working across the Ghanaian health system levels, as well as to understand the perspectives and experiences of participants on how PPP contributes to health system improvement. The qualitative study was undertaken in six communities in three districts in the Ashanti region of Ghana. Data were collected from semi-structured individual interviews. The selection of participants was purposive, based on their PPP-related roles. As a result, findings of this study may not reflect the experiences of others who are not directly involved in PPP initiatives. Thirty-five participants, mainly health service users and health professionals, were interviewed. Data were transcribed and analysed descriptively using Braun and Clarke's (2006) thematic analysis approach. Overall, participants noted PPP implementation was largely limited at higher health system levels (i.e. national, regional and district levels), but was functioning at the community level. PPP also improved access to health services, responsiveness to patient needs, community-health worker relationships, health-seeking behaviours, empowered healthcare users and improved health outcomes. The study, therefore, recommended the need to undertake PPP across all levels of the health system to maximize PPP's role in health system improvement. Finally, the study suggested prioritizing PPP, especially for resource-poor countries, to complement government's efforts in improving accessibility of healthcare services to many communities and also provide a more patient-centred healthcare system responsive to patients' and public needs.

Health-related quality of life following trauma: Prevalence of problems and factors associated with six-month outcomes in a New Zealand cohort.

Injury is a leading cause of health loss in Aotearoa me Te Waipounamu (New Zealand; NZ). The NZ Trauma Registry was established in 2015 to monitor outcomes in those experiencing severe injury and to identify ways of improving the quality of care for these patients. Few NZ studies have assessed outcomes in trauma patients using patient-reported outcome measures (PROMs) despite increasing recognition that the impacts of injury are better understood through PROMs. Our aim was to estimate the prevalence of self-reported problems with health-related quality of life (HRQoL) outcomes six months post-injury, and identify factors associated with these, in a cohort of Maori (the Indigenous population of NZ) and non-Maori individuals who had experienced major trauma. HRQoL outcomes were measured according to the five dimensions of the EQ-5D-5L. This information, along with sociodemographic data, was collected via structured telephone interviews. Participants (n = 870), aged 16 years or more, were recruited following admission to a trauma hospital in one of three (of NZ's four) trauma regions. Multivariable models were developed using modified Poisson Regression to identify factors associated with outcomes for both Maori and non-Maori patients. The prevalence and severity of problems across each of the five EQ-5D-5L dimensions was similar for Maori and non-Maori except for Anxiety/Depression. The prevalence and severity of problems with Anxiety/Depression was greater for Maori. Factors associated with HRQoL problems at six-months were also largely similar for each cohort. Those commonly associated with outcomes were age, hospital length of stay, adequacy of household income, and participants' expectations regarding recovery from injury. Further research examining recovery expectations in trauma patients to determine which factors contribute to formulating recovery expectations, and the potential impact of recovery expectations on treatment and rehabilitation, would be of value. Should expectations, at least in part, influence HRQoL outcomes, then routinely collecting data on patients' recovery expectations, adequacy of household income and potential barriers to treatment and rehabilitation, could help inform post-hospital treatment plans, and identify those who may require additional support following discharge from hospital.

Barriers to adopting digital contact tracing for COVID-19: Experiences in New Zealand.

BACKGROUND: Digital contact tracing (DCT) was a central component of the global response to containing COVID-19. Research has raised concerns that DCT could exacerbate inequities, yet the experiences of diverse communities at greater risk from COVID-19 are typically underrepresented. METHODS: The present study aimed to understand the perceived barriers to the adoption of the app amongst Maori, Pasifika, and disabled people. Focus groups and interviews were undertaken with Maori, Pasifika, and disability sector stakeholders and community participants. RESULTS: Participants (n = 34) generally expressed willingness to utilise DCT and support its adoption within the communities. Simultaneously, participants revealed how the app could marginalise community members who struggled with the usability and those distrusting of the government's COVID-19 interventions. CONCLUSIONS: The findings highlight how addressing communication inequality can assist in the development of contact-tracing responses that are both effective and equitable. The study provides insights about the role of information and communication technologies as health resources. PATIENT OR PUBLIC CONTRIBUTION: Consulting with members of the target communities was central throughout the present study, including recommendations for potential participants, participation in interviews and sharing early findings for feedback. This study reports on focus groups and interviews with individuals from Maori and disability sectors.

New Zealand's Prospective Outcomes of Injury Study-10 years on (POIS-10): descriptive outcomes to 12 years post-injury.

BACKGROUND: The 'Prospective Outcomes of Injury Study-10 years on' (POIS-10) aims to contribute to improving long-term disability, health and well-being outcomes for injured New Zealanders. This brief report describes recruitment, characteristics and key outcomes to 12 years post-injury. METHODS: Between 2007 and 2009, the study recruited 2856 people, including 566 Maori, from New Zealand's Accident Compensation Corporation's entitlement claims register. People experienced a range of injury types, causes and settings; 25% had been hospitalised for their injury. POIS-10 data were primarily collected via interviewer-administered structured questionnaires. RESULTS: Of the original participants, 2068 (92%) were eligible for follow-up in POIS-10. Of these, 1543 (75%) people participated between March 2020 and July 2021, including 240 Maori. Half of the participants (n=757; 50%) reported ongoing problems attributed to their injury 12 years earlier. Most reported difficulties with items assessing disability (WHO Disability Assessment Schedule II). For health-related quality of life (HRQoL), measured using the EQ-5D-5L, the prevalence of problems was higher 12 years post-injury compared with 12 months post-injury for four of five dimensions. Importantly, the prevalence of problems did not reduce to pre-injury levels for any HRQoL dimension. DISCUSSION: POIS-10 highlights the importance of early post-injury interventions to improve health, disability and well-being outcomes of injured New Zealanders.

Unsung heroes in Ghana's healthcare system: the case of community health volunteers and community health management committee.

BACKGROUND: In Ghana, the community-based health planning and services (CHPS) policy highlights the significance of both community health management committees (CHMCs) and community health volunteers (CHVs) in the Ghanaian health system. However, research into their specific effects on health system improvement is scarce. Some research has focussed on the roles of the CHMCs/CHVs in implementing specific targeted health interventions but not on improving the overall health system. Therefore, this research aims to examine the role of the CHMCs and CHVs in improving the Ghanaian health system. METHODS: The study was conducted in three districts in the Ashanti region of Ghana. A total of 35 participants, mainly health service users and health professionals, participated in the study. Data were collected using semi-structured individual in-depth interviews. Participants were selected according to their patient-public engagement or community health activity roles. Data were transcribed and analysed descriptively using NVIVO 12 Plus. RESULTS: We found that the effectiveness of CHMCs and CHVs in health systems improvement depends largely on how members are selected. Additionally, working through CHMC and CHVs improves resource availability for community health services, and using them in frontline community health activities improves health outcomes. CONCLUSIONS: Overall, we recommend that, for countries with limited healthcare resources such as Ghana, leveraging the significant role of the CHMCs and CHVs is key in complementing government's efforts to improve resource availability for healthcare services. Community health management committees and CHVs are key in providing basic support to communities with limited healthcare personnel. Thus, there is a need to strengthen their capacities to improve the overall health system.

Cohort profile: The Trauma Outcomes Project, a prospective study of New Zealanders experiencing major trauma.

PURPOSE: Patient-reported outcome measures (PROMs) are useful for trauma registries interested in monitoring patient outcomes and trauma care quality. PROMs had not previously been collected by the New Zealand Trauma Registry (NZTR). More than 2500 New Zealanders are admitted to hospital for major trauma annually. The Trauma Outcomes Project (TOP) collected PROMs postinjury from three of New Zealand's (NZ's) major trauma regions. This cohort profile paper aims to provide a thorough description of preinjury and 6 month postinjury characteristics of the TOP cohort, including specifically for Maori (Indigenous population in Aotearoa me Te Waipounamu/NZ). PARTICIPANTS: Between July 2019 and June 2020, 2533 NZ trauma patients were admitted to one of 22 hospitals nationwide for major trauma and included on the NZTR. TOP invited trauma patients (aged ≥16 years) to be interviewed from three regions; one region (Midlands) declined to participate. Interviews included questions about health-related quality of life, disability, injury recovery, healthcare access and household income adequacy. FINDINGS TO DATE: TOP recruited 870 participants, including 119 Maori. At 6 months postinjury, most (85%) reported that the injury still affected them, 88% reported problems with≥1 of five EQ-5D-5L dimensions (eg, 75% reported problems with pain or discomfort, 71% reported problems with usual activities and 52% reported problems with mobility). Considerable disability (World Health Organization Disability Assessment Schedule, WHODAS II, score ≥10) was reported by 45% of participants. The prevalence of disability among Maori participants was 53%; for non-Maori it was 44%. Over a quarter of participants (28%) reported trouble accessing healthcare services for their injury. Participation in paid work decreased from 63% preinjury to 45% 6 months postinjury. FUTURE PLANS: The 12 and 24 month postinjury data collection has recently been completed; analyses of 12 month outcomes are underway. There is potential for longer-term follow-up interviews with the existing cohort in future. TOP findings are intended to inform the National Trauma Network's quality improvement processes. TOP will identify key aspects that aid in improving postinjury outcomes for people experiencing serious injury, including importantly for Maori.

Reflections on the Prospective Outcomes of Injury Study (POIS; 2006-2023): how population-based research can address Maori outcomes and governance.

Injury is a leading cause of disability. Twenty years ago, we knew financial costs of injury were high but little was known about the short, medium and long-term outcomes after injury. In 2006, a Pilot Study and engagement with Maori across the country was undertaken to discuss the planned main study to understand how best to design a study that was meaningful and beneficial to Maori and policy-makers. Between 2007-2009, 2,856 injured New Zealanders (including 20% Maori) with an Accident Compensation Corporation (ACC) entitlement claim were recruited to the Prospective Outcomes of Injury Study (POIS). Participants shared detailed information (at 3, 12 and 24 months, and 12-years post-injury) about a broad range of topics including: the injury, socio-demographics, health, health services access, employment and wellbeing. Administrative data about injury-related hospitalisations, the sentinel injury and subsequent injuries were also collected, as well as in-depth qualitative interviews. This paper focuses on the why, how and impacts of POIS, especially in relation to Maori design and approaches, capability and capacity building, and leadership. Focusing on these aspects for Maori within POIS over time has ensured delivery of findings capable of informing and improving outcomes and policy. In particular, POIS has had considerable impact, influencing ACC's research strategy and outcomes' focus, and has provided disability, health, and wellbeing outcomes knowledge previously unavailable, especially for Maori.

Implementing patient-public engagement for improved health: Lessons from three Ghanaian community-based programmes.

BACKGROUND: Community-based health interventions have been implemented as a key strategy for achieving improved health outcomes in Ghana. Effectiveness, however, largely depends on the successful implementation of patient-public engagement (PPE). Although several PPE studies have been conducted in Ghana, little research has been done to understand the specific role of PPE in the context of implementing community-based health programmes. This paper, therefore, examines the extent of PPE implementation in three selected community-based health programmes (Community-based Health Planning and Service [CHPS], Community-based Maternal and Child Health and Buruli Ulcer) to understand their specific effects on health outcomes. METHODS: Three focus groups, involving 26 participants, were held in three districts of the Ashanti region of Ghana. Participants were mainly health service users involving community health committee members/volunteers, residents and health professionals. They were invited to participate based on their roles in the design and implementation of the programmes. Participants focused on each of Rifkin's spider-gram components. Data were transcribed and analysed descriptively using NVIVO 12 Plus. RESULTS: PPE implementation was found to be extensive across the three programmes in specific areas such as organisation and resource mobilisation. PPE was more restricted in relation to community needs assessment, leadership and management, particularly for the CHPS and Buruli Ulcer programmes. CONCLUSION: Findings suggest that benefits from community-based health interventions are likely to be greater if PPE can be widely implemented across all dimensions of the spider-gram framework.

Multiple symptom illness in New Zealand contemporary veterans.

AIMS: To describe patterns of multiple symptom illness (MSI) in New Zealand military veterans, defined as clusters of "medically unexplained" symptoms not fitting within a specific medical diagnosis, and to investigate the relationship with exposure to traumatic events. METHODS: We designed an online cross-sectional survey. The participants of interest were the 3,874 currently serving veterans who had been deployed to a conflict zone, but all veterans were eligible to participate. A modified Centers for Disease Control (CDC) 54-item symptom checklist identified MSI, the post-traumatic checklist-military version (PCL-M) identified symptoms of post-traumatic stress disorder (PTSD) and the brief trauma scale assessed "war zone" service. Factor analysis was used to identify unobserved "latent factors" in the data, factor severity scores and the number of symptoms being calculated for each respondent. RESULTS: The CDC questionnaire was completed by 1,819 veterans, with 1,672 completing the PCL-M. The factor analysis revealed three factors, explaining 86% of the variation in the data. Factor 1 symptoms were of an arthro-neuromuscular nature, Factor 2 cognitive and Factor 3 psycho-physiological. Discriminant function analysis showed that the factors could discriminate between those with and without PTSD but could not discriminate between those who did and did not serve in a war zone. CONCLUSIONS: In veterans, multiple symptoms including pain, sleep disorders, cognitive problems and avoidance, especially when severe, may be worthy of further investigation by health professionals because of the possible association with PTSD.

Opportunities for preventing subsequent injuries: a qualitative study exploring perspectives of people who have experienced injuries.

AIM: This study aims to examine opportunities for subsequent injury prevention from the perspectives of people who have recently experienced subsequent injury events. METHODS: This qualitative study involved individual semi-structured interviews with people who had >2 injury events in the previous 12 months. Interviews were audio-recorded, transcribed verbatim and thematic analysis undertaken. RESULTS: Sixteen interviews were completed with participants who had experienced a range of index and subsequent injury types. Potential opportunities raised were wide-ranging. Some related to individuals, e.g., motivation to carry out prevention strategies. Other opportunities were related to healthcare providers and the health system. For instance, increasing consultation times to allow a focus on subsequent injury prevention, building rapport and tailoring their approach to the individual, proactively referring people to a range of healthcare providers, and ensuring people are aware of resources and supports available following injury. Broader environmental and societal opportunities were also suggested, such as ensuring adequate social support following injury, ensuring accessibility to rehabilitation and community facilities and the modification of built environments. CONCLUSION: A broad range of potential opportunities to prevent subsequent injuries were raised. These opportunities are promising and future research to trial interventions raised in this study is warranted to determine their feasibility and effectiveness.

Health-related quality of life 12 years after injury: prevalence and predictors of outcomes in a cohort of injured Maori.

PURPOSE: Studies have found that many people who sustain an injury can experience adverse outcomes for a considerable time thereafter. Maori, the Indigenous peoples of Aotearoa me Te Waipounamu (New Zealand; NZ), are no exception. The Prospective Outcomes of Injury Study (POIS) found that almost three-quarters of Maori participants were experiencing at least one of a range of poor outcomes at two years post-injury. The aim of this paper was to estimate the prevalence, and identify predictors, of adverse health-related quality of life (HRQoL) outcomes in the POIS-10 Maori cohort, 12 years after participants sustained an injury. METHODS: Interviewers reached 354 individuals who were eligible to participate in a POIS-10 Maori interview, to be conducted a decade after the last phase of POIS interviews (held 24 months post-injury). The outcomes of interest were responses to each of the five EQ-5D-5L dimensions at 12 years post-injury. Potential predictors (i.e., pre-injury sociodemographic and health measures; injury-related factors) were collected from earlier POIS interviews. Additional injury-related information was collected from administrative datasets proximate to the injury event 12 years prior. RESULTS: Predictors of 12-year HRQoL outcomes varied by EQ-5D-5L dimension. The most common predictors across dimensions were pre-injury chronic conditions and pre-injury living arrangements. CONCLUSION: An approach to rehabilitation where health services proactively enquire about, and consider the broader aspects of, patient health and wellbeing throughout the injury recovery process, and effectively coordinate their patients' care with other health and social services where necessary, may help improve long-term HRQoL outcomes for injured Maori.

Staff perceptions of the quality of care delivered in a New Zealand mental health and addiction service: Findings from a qualitative study.

In New Zealand, people receiving care from specialist mental health and addiction services experience poorer health outcomes compared to the general population. Maori (Indigenous) specialist mental health and addiction service users experience disproportionate inequities. This study aims to: (1) Describe and understand mental health staff perspectives on the quality of care delivered to specialist mental health and addiction service users in their service - including specifically for Maori; and (2) Identify areas staff report as opportunities for quality improvement. In 2020, Southern District Health Board (now Te Whatu Ora - Southern) mental health staff were invited to participate in a cross-sectional study assessing their perceptions of a range of service aspects. This paper presents quantitative and qualitative analyses about quality of care. Among the 319 staff who completed the questionnaire; 272 provided quality-of-care responses. Among these, 78% reported the quality of care delivered to service users as 'good' or 'excellent'; only 60% reported this for Maori service users. Participants identified individual, service and broader system level factors influencing the quality of care delivered to service users, including factors specific for Maori. This study has identified, for what appears to be the first time, empirical and concerning differences in staff ratings of the quality of care delivered to Maori and SMHAS users overall. Findings highlight the need for institutional and managerial prioritization of hauora Maori, and incorporating tikanga Maori and Te Tiriti into practice.

Predictors of hospital readmission after trauma: A retrospective cohort study in New Zealand.

INTRODUCTION: Understanding predictors of hospital readmission following major trauma is important as readmissions are costly and some are potentially avoidable. This study describes the incidence of, and sociodemographic, injury-related and treatment-related factors predictive of, hospital readmission related to: a) all-causes, b) the index trauma injury, and c) subsequent injury events in the 30 days and 12 months following discharge for major trauma patients nationally in New Zealand. METHODS: Data from the New Zealand Trauma Registry (NZTR) was linked with Ministry of Health hospital discharge data. Hospital readmissions were examined for all patients entered into the NZTR for an injury event between 1 January and 31 December 2018. Readmissions were examined for the 12-months following the discharge date for participant's index trauma injury. RESULTS: Of 1986 people, 42% had ≥1 readmission in the 12 months following discharge; 15% within 30 days. Seven percent had ≥1 readmission related to the index trauma within 30 days of discharge; readmission was 3.43 (95% CI 1.87, 6.29) times as likely if the index trauma was self-inflicted compared to unintentional, and 1.64 (95% CI 1.15, 2.34) times as likely if the index trauma involved intensive care unit admission. Those admitted to hospital for longer for their index trauma were less likely to be readmitted due to their index trauma injury within 30 days compared to those admitted for 0-1 day. Seventeen percent were readmitted for a subsequent injury event within 12 months, with readmission more likely for older people (>65 years), those with comorbidities, Maori compared with non-Maori and those with higher trauma injury severity. CONCLUSION: A substantial proportion of people are readmitted after discharge for major trauma. Factors identified in this study will be useful to consider when developing interventions to reduce preventable readmissions including those related to the index trauma injury, readmissions from other causes and subsequent injury-related readmissions. Further research specifically examining planned and unplanned readmissions is warranted.

Health-related quality of life measures used with Indigenous children/youth in the Pacific Rim: a scoping review.

OBJECTIVE: To identify and describe (1) which health-related quality of life (HRQoL) measures have been used with Indigenous children/youth (aged 8-17 years) within the Pacific Rim; and (2) studies that refer to Indigenous health concepts in the use of child/youth HRQoL measures. DESIGN: A scoping review. DATA SOURCES: Ovid (Medline), PubMed, Scopus, Web of Science and CINAHL were searched up until 25 June 2020. ELIGIBILITY CRITERIA: Eligible papers were identified by two independent reviewers. Eligible papers were written in English, published between January 1990 and June 2020 and included an HRQoL measure used in research with Indigenous child/youth populations (aged between 8 and 17 years) in the Pacific Rim region. DATA EXTRACTION AND SYNTHESIS: Data extracted included study characteristics (year, country, Indigenous population, Indigenous sample size, age group), HRQoL measure characteristics (generic or condition-specific measure, child or adult measure, who completed the measure(s), dimensions, items and response scale of measure) and consideration of Indigenous concepts (created for Indigenous population, modified for Indigenous population, validated for Indigenous population, reliability in Indigenous populations, Indigenous involvement, reference to Indigenous theories/models/frameworks). RESULTS: After removing duplicates, 1393 paper titles and abstracts were screened, and 543 had full-text review for eligibility. Of these, 40 full-text papers were eligible, reporting on 32 unique studies. Twenty-nine HRQoL measures were used across eight countries. Thirty-three papers did not acknowledge Indigenous concepts of health, and only two measures were specifically created for use with Indigenous populations. CONCLUSIONS: There is a paucity of research investigating HRQoL measures used with Indigenous children/youth and a lack of involvement of Indigenous peoples in the development and use of HRQoL measures. We strongly recommend explicit consideration of Indigenous concepts when developing, validating, assessing and using HRQoL measures with Indigenous populations.

Describing the health-related quality of life of Maori adults in Aotearoa me Te Waipounamu (New Zealand).

PURPOSE: In Aotearoa me Te Waipounamu (New Zealand; NZ) there are considerable inequities in health status and outcomes for Maori, the Indigenous peoples of NZ. It is therefore important that the health status and preferences of Maori are specifically considered in healthcare policy and decision making. This paper describes the health-related quality of life of 390 Maori adults who took part in the NZ EQ-5D-5L valuation study. METHODS: Responses on the five dimensions of the EQ-5D-5L were dichotomised into "no problems" and "any problems", summarised and disaggregated by age group. Mean preference weights were reported by age group and overall. Mean utility values (calculated by applying each participant's preference weights to their EQ-5D-5L profile) were summed and respective means and standard deviations reported by age, chronic disease status and disability. RESULTS: The EQ-5D-5L dimensions with the highest proportion of participants reporting any problems were pain/discomfort (61.5%) and anxiety/depression (50%). The most commonly-reported chronic disease was mental illness/distress (24.6%). Anxiety/depression ranked as the most important dimension, with usual activities, the least important. The mean utility value was 0.83 with the lowest value (0.79) found in the 18-24 and 45-54 age groups. For participants with at least one chronic disease the mean utility value was 0.76 compared to 0.91 for those with none. CONCLUSION: To reduce inequities experienced by Maori it is crucial that the health status of Maori and the values Maori place on health-related quality of life are properly understood. This can only be achieved using Maori-specific data.

Early Opportunities to Explore Occupational Identity Change: Qualitative Study of Return-To-Work Experiences After Stroke.

BACKGROUND: Rates of return-to-work after stroke are low, yet work is known to positively impact people's wellbeing and overall health outcomes. OBJECTIVE: To understand return-to-work trajectories, barriers encountered, and resources that may be used to better support participants during early recovery and rehabilitation. PARTICIPANTS: The experiences of 31 participants (aged 25-76 years) who had or had not returned to work after stroke were explored. METHODS: Interview data were analysed using reflexive thematic analysis methods within a broader realist research approach. RESULTS: Participants identified an early need to explore a changed and changing occupational identity within a range of affirming environments, thereby ascertaining their return-to-work options early after stroke. The results articulate resources participants identified as most important for their occupational explorations. Theme 1 provides an overview of opportunities participants found helpful when exploring work options, while theme 2 explores fundamental principles for ensuring the provided opportunities were perceived as beneficial. Finally, theme 3 provides an overview of prioritized return-to-work service characteristics. CONCLUSION: The range and severity of impairments experienced by people following stroke are broad, and therefore their return-to-work needs are diverse. However, all participants, irrespective of impairment, highlighted the need for early opportunities to explore their changed and changing occupational identity.

Disrupted mana and systemic abdication: Maori qualitative experiences accessing healthcare in the 12 years post-injury.

BACKGROUND: Maori have been found to experience marked health inequities compared to non-Maori, including for injury. Accessing healthcare services post-injury can improve outcomes; however, longer-term experiences of healthcare access for injured Maori are unknown. This paper reports on data from the longitudinal Prospective Outcomes of Injury Study - 10 year follow up (POIS-10) Maori study in Aotearoa/New Zealand (NZ), to qualitatively understand Maori experiences of accessing injury-related healthcare services long-term. METHODS: Follow-up telephone interviews were conducted with 305 POIS-10 Maori participants, who were injured and recruited 12-years earlier, experiencing a range of injury types and severities. Free text responses about trouble accessing injury-related health services were thematically analysed. RESULTS: Sixty-one participants (20%) reported trouble accessing injury-related health services and provided free text responses. Three related themes describing participants' experiences were connected by the overarching concept that participants were engaging with a system that was not operating in a way it was intended to work: 1) Competing responsibilities and commitments encapsulates practical barriers to accessing services, such as a lack of time and having to prioritise other responsibilities such as work or whanau (family); 2) Disrupted mana refers to the feelings of personal disempowerment through, for example, receiving limited support, care or information tailored to participants' circumstances and is a consequence of patients contending with the practical barriers to accessing services; and 3) Systemic abdication highlights systemic barriers including conflicting information regarding diagnoses and treatment plans, and healthcare provider distrust of participants. CONCLUSIONS: Twelve years post-injury, a considerable proportion of Maori reported experiencing barriers to accessing healthcare services. To restore a sense of manaakitanga and improve Maori access to healthcare, Maori-specific supports are required and systemic barriers must be addressed and removed.