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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.
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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.
Subject(s)
Quality of Life , Wounds and Injuries , Humans , New Zealand/epidemiology , Male , Female , Prospective Studies , Adult , Wounds and Injuries/epidemiology , Middle Aged , Disabled Persons/statistics & numerical data , Disability Evaluation , Surveys and Questionnaires , Young Adult , AdolescentABSTRACT
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.
Subject(s)
COVID-19 , Humans , Communication , Contact Tracing , Maori People , New Zealand , Pacific Island PeopleABSTRACT
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.
Subject(s)
Delivery of Health Care , Public Health , Humans , Ghana , Community Health Services , VolunteersABSTRACT
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.
Subject(s)
Maori People , Quality of Life , Wounds and Injuries , Humans , New Zealand/epidemiology , Outcome Assessment, Health Care/methods , Prevalence , Prospective Studies , Quality of Life/psychology , Wounds and Injuries/ethnologyABSTRACT
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.
Subject(s)
Health Status Disparities , Health Status , Maori People , Quality of Life , Adult , Humans , Chronic Disease , New Zealand , Quality of Life/psychology , Surveys and QuestionnairesABSTRACT
PURPOSE: To examine the life satisfaction outcomes after spinal cord injury (SCI) and to identify the factors associated with life satisfaction at 18 months and 10 years post-SCI in New Zealand (NZ). METHODS: Adults (16-64 years) were recruited between 2007 and 2009 from NZ's two spinal units following first admission for SCI. Interviews at 6 months, 18 months, and 10 years post-SCI examined demographic, physical, psychosocial, economic, and environmental characteristics. Multivariable regression models were used to identify predictors of life satisfaction at each timepoint. RESULTS: Overall, 118 people participated at 6 months, 103 at 18 months, and 63 at 10 years post-SCI. Pre-SCI, 90% of participants were satisfied with life, 67% were satisfied at 18 months, and 78% at 10 years. At 18 months post-SCI, participants who reported: never or sometimes using a wheelchair, no problems with self-care, no problems with anxiety or depression, no/lesser disability, or fewer secondary health conditions (SHCs) at 6 months post-SCI were more likely to be satisfied (p < 0.05), compared to those without these characteristics. Participants who experienced considerable disability at 6 months post-SCI were 22% less likely to be satisfied 10 years post-SCI compared to those experiencing no/lesser disability (p = 0.028). CONCLUSIONS: A higher proportion of participants were satisfied at both 18 months and 10 years post-SCI than not satisfied. To improve the likelihood of satisfaction with life, increased focus on reducing disability and providing supports for those using wheelchairs, experiencing anxiety/depression or problems with self-care, and effects of SHCs are promising for future potential interventions.
Subject(s)
Quality of Life , Spinal Cord Injuries , Adult , Humans , Prospective Studies , New Zealand , Quality of Life/psychology , Spinal Cord Injuries/psychology , Personal SatisfactionABSTRACT
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.
Subject(s)
Buruli Ulcer , Community Health Planning , United States , Child , Humans , Ghana , Focus Groups , Patient ParticipationABSTRACT
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.
Subject(s)
Health Services Accessibility , Health Services , Humans , Prospective Studies , Health Facilities , New Zealand , Maori PeopleABSTRACT
PURPOSE: Maori, the Indigenous population of New Zealand (NZ), are at higher risk of problems with health-related quality of life (HRQoL) 12 months following injury. This paper examines pre-injury sociodemographic and health characteristics and injury-related factors, including healthcare access, and their association with HRQoL outcomes 12 months after injury. METHODS: The Prospective Outcomes of Injury Study recruited 2856 injured New Zealanders aged 18-64 years from the entitlement claims register of the country's no-fault injury insurance agency. One-fifth (n = 566) of the cohort were Maori. Information on predictors and outcomes, with the exception of injury and hospitalisation, was obtained directly from participants at approximately 3 and 12 months post-injury. The outcomes of interest were responses to the five dimensions of the EQ-5D-3L and a dichotomous measure obtained by summing scored responses to each question. Modified Poisson regression was used to identify predictors of each outcome at 12 months post-injury. RESULTS: Predictors differed by outcome. Being female, experiencing EQ-5D-3L problems pre-injury, having ≥ 2 chronic conditions pre-injury, perceiving one's injury to be a threat of long-term disability, and having trouble accessing health services for injury were common predictors of EQ-5D-3L problems at 12 months post-injury for Maori. CONCLUSION: Opportunities exist to improve HRQoL outcomes by identifying individuals in the early stages of injury recovery who may benefit from further treatment and support.
Subject(s)
Native Hawaiian or Other Pacific Islander , Quality of Life , Cohort Studies , Female , Humans , Male , New Zealand/epidemiology , Prospective Studies , Quality of Life/psychology , Surveys and QuestionnairesABSTRACT
BACKGROUND: Road traffic injuries (RTIs), primarily musculoskeletal in nature, are the leading cause of unintentional injury worldwide, incurring significant individual and societal burden. Investigation of a large representative cohort is needed to validate early identifiable predictors of long-term work incapacity post-RTI. Therefore, up until two years post-RTI we aimed to: evaluate absolute occurrence of return-to-work (RTW) and occurrence by injury compensation claimant status; evaluate early factors (e.g., biopsychosocial and injury-related) that influence RTW longitudinally; and identify factors potentially modifiable with intervention (e.g., psychological distress and pain). METHODS: Prospective cohort study of 2019 adult participants, recruited within 28 days of a non-catastrophic RTI, predominantly of mild-to-moderate severity, in New South Wales, Australia. Biopsychosocial, injury, and compensation data were collected via telephone interview within one-month of injury (baseline). Work status was self-reported at baseline, 6-, 12-, and 24-months. Analyses were restricted to participants who reported paid work pre-injury (N = 1533). Type-3 global p-values were used to evaluate explanatory factors for returning to 'any' or 'full duties' paid work across factor subcategories. Modified Poisson regression modelling was used to evaluate factors associated with RTW with adjustment for potential covariates. RESULTS: Only ~ 30% of people with RTI returned to full work duties within one-month post-injury, but the majority (76.7%) resumed full duties by 6-months. A significant portion of participants were working with modified duties (~ 10%) or not working at all (~ 10%) at 6-, 12-, and 24-months. Female sex, low education, low income, physically demanding occupations, pre-injury comorbidities, and high injury severity were negatively associated with RTW. Claiming injury compensation in the fault-based scheme operating at the time, and early identified post-injury pain and psychological distress, were key factors negatively associated with RTW up until two years post-injury. CONCLUSIONS: Long-term work incapacity was observed in 20% of people following RTI. Our findings have implications that suggest review of the design of injury compensation schemes and processes, early identification of those at risk of delayed RTW using validated pain and psychological health assessment tools, and improved interventions to address risks, may facilitate sustainable RTW. TRIAL REGISTRATION: This study was registered prospectively with the Australian New Zealand Clinical Trials Registry (ACTRN12613000889752).
Subject(s)
Accidents, Traffic , Pain , Accidents, Traffic/psychology , Adult , Australia , Cohort Studies , Female , Humans , Prospective StudiesABSTRACT
OBJECTIVE: Post-traumatic stress disorder following injuries unrelated to mass casualty events has received little research attention in New Zealand. Internationally, most studies investigating predictors of post-injury post-traumatic stress disorder focus on hospitalised patients although most survivors are not hospitalised. We compared the prevalence and predictors of symptoms suggestive of post-traumatic stress disorder 12 months following injury among hospitalised and non-hospitalised entitlement claimants in New Zealand's Accident Compensation Corporation. This government-funded universal no-fault insurance scheme replaced tort-based compensation for injuries in 1974 since when civil litigation (which can bias post-traumatic stress disorder estimates) has been rare. METHODS: A total of 2220 Accident Compensation Corporation claimants aged 18-64 years recruited to the Prospective Outcomes of Injury Study were interviewed at 12 months post-injury to identify symptoms suggestive of post-traumatic stress disorder using the Impact of Events Scale. Multivariable models examined the extent to which baseline sociodemographic, injury, health status and service interaction factors predicted the risk of post-traumatic stress disorder symptoms among hospitalised and non-hospitalised groups. RESULTS: Symptoms suggestive of post-traumatic stress disorder were reported by 17% of hospitalised and 12% of non-hospitalised participants. Perceived threat to life at the time of the injury doubled this risk among hospitalised (adjusted relative risk: 2.0; 95% confidence interval: 1.2-3.2) and non-hospitalised (relative risk: 1.8; 95% confidence interval: 1.2-2.8) participants. Among hospitalised participants, other predictors included female gender, Pacific and 'other' minority ethnic groups, pre-injury depressive symptoms, financial insecurity and perceived inadequacies in healthcare interactions, specifically information and time to discuss problems. Among non-hospitalised survivors, predictors included smoking, hazardous drinking, assault and poor expectations of recovery. CONCLUSION: One in six hospitalised and one in eight non-hospitalised people reported post-traumatic stress disorder symptoms 12 months following injury. Perceived threat to life was a strong predictor of this risk in both groups. Identifying early predictors of post-traumatic stress disorder, regardless of whether the injury required hospitalisation, could help target tailored interventions that can reduce longer-term psychosocial morbidity.
Subject(s)
Stress Disorders, Post-Traumatic , Wounds and Injuries , Female , Hospitalization , Humans , New Zealand/epidemiology , Prevalence , Prospective Studies , Stress Disorders, Post-Traumatic/diagnosis , Stress Disorders, Post-Traumatic/epidemiology , Wounds and Injuries/epidemiologyABSTRACT
Digital contact tracing (DCT) is the application of digital tools to assist with identifying and informing close contacts of a COVID-19 case. DCT is a potential solution to capacity constraints of current manual contact tracing processes. Expert opinion from contact tracing professionals rarely informs public discourse on the benefits and limitations of DCT solutions. Three focus groups were undertaken in New Zealand to understand benefits and limitations of DCT solutions from contact tracing professionals. One was with the National Investigation and Tracing Centre (NITC) and two were with Public Health Units (PHUs). Participants highlighted four key themes including: (i) equity, (ii) privacy, (iii) communication and public perception and (iv) the operational model. Participants were concerned DCT solutions could exacerbate existing health inequities due to lack of access to, or familiarity with, technology. Poor communication and public understanding of DCT were seen as a major threat to both the efficacy of DCT solutions and the wider COVID-19 response. Most importantly, end-users were cautious of the operational model for DCT data that might: (i) attempt to replace manual processes that cannot or should not be automated by technology (case investigations, follow-ups); (ii) place undue burden on citizens and (iii) increase the workload for the current system beyond its capacity, for unproven or limited benefit. To be effective, contact tracing professionals believed DCT technologies must have strong privacy safeguards, a clear and simple communication strategy, interoperability with the existing contact tracing system and a foundation of health equity.
Subject(s)
COVID-19 , Contact Tracing , COVID-19/prevention & control , Humans , New Zealand , Policy , Problem SolvingABSTRACT
OBJECTIVES: To derive New Zealand (NZ) population norms for the EQ-5D-5L and to examine the association between participants' sociodemographic characteristics and their health-related quality of life. METHODS: Data from the 2018 NZ EQ-5D-5L valuation study (n = 2468) were used. Each participant's 5-digit profile was converted to a single utility value using their personal value set. The profiles, mean utility values, and mean EuroQol visual analog scale (EQ-VAS) scores were summarized by dimension and disaggregated by age group and gender. Multivariable logistic and Tobit regressions were used to investigate the association between participants' sociodemographic characteristics and the EQ-5D-5L dimensions, utility values, and EQ-VAS scores. RESULTS: The mean utility value was 0.847 and the mean EQ-VAS score was 74.8. Of the 3125 possible EQ-5D-5L profiles, 25 profiles represented the current health status of the majority of participants (78%). The odds of having problems with anxiety or depression was greatest for people aged 18 to 24 years and decreased with age. People with a long-term disability or chronic illness had greater odds of problems on all dimensions and lower (poorer) utility values and EQ-VAS scores. Age, ethnicity, employment status, long-term disability, and chronic illness were associated with utility. CONCLUSION: EQ-5D-5L population norms were derived for the NZ population using the personal value sets of 2468 participants. Consistent with other countries' population norms, EQ-5D-5L utility values and EQ-VAS scores were associated with age, employment status, long-term disability, and chronic illness. These norms will support resource allocation decision making and help in understanding the health-related quality of life of the NZ population.
Subject(s)
Health Surveys , Quality of Life , Adolescent , Adult , Aged , Employment , Female , Health Status , Humans , Male , Middle Aged , New Zealand , Young AdultABSTRACT
BACKGROUND: There is growing evidence that a range of pre-injury, injury related and post-injury factors influence social and health outcomes across the injury severity spectrum. This paper documents health related outcomes for people with mild, moderate and severe injury after motor vehicle crash (MVC) injuries in New South Wales, Australia. METHODS: This inception cohort study followed 2019 people injured in MVCs, for 6 and 12 months post-injury. We categorised moderate injury as hospital length-of-stay (LOS) of 2-6 days and Injury Severity Score (ISS) of 4-11, while severe injury as LOS ≥7 days or ISS ≥ 12. We examined differences in paid work status, 12-Item Short Form Survey (SF12), EQ-5D and World Health Organisation Disability Assessment Schedule II (WHODAS) outcomes longitudinally from baseline to 12 months between levels of injury severity using linear mixed models for repeated measures. We first considered minimally sufficient adjustment factors (age, sex, crash role, perceived danger in crash, pre-injury health, pre-injury EQ-5D, recruitment source), and then more extensive adjustments including post-injury factors. The presence of mediating pathways for SF-12 Physical Component Summary (PCS) and Mental Component Summary (MCS) via post-injury factors was evaluated. RESULTS: Based on hospital length of stay (LOS), 25 and 10% of participants sustained moderate and severe injuries, respectively, while 43 and 4% had these injuries based on ISS. Twelve months post-injury LOS ≥7 days versus ≤1 day was associated with an estimated 9 units lower mean SF12 PCS using a minimally sufficient adjustment model, and LOS ≥ 7 days was associated with a 3 units lower mean SF12 MCS score. Mediation analyses (LOS ≥ 7 days vs ≤1 day) found for SF12 MCS outcomes, effects of injury severity were small and mostly indirect (direct effect - 0.03, indirect effect - 0.22). Whereas for SF12 PCS outcomes the effect of having a more severe injury rather than mild were both direct and indirect (direct effect - 0.50, indirect effect - 0.38). CONCLUSIONS: Individuals with severe injuries (those with LOS ≥ 7 days and ISS 12+) had poorer recovery 12 months after the injury. In addition, post-injury mediators have an important role in influencing long-term health outcomes. TRIAL REGISTRATION: Australia New Zealand Clinical trial registry identification number - ACTRN12613000889752 .
Subject(s)
Accidents, Traffic , Wounds and Injuries , Australia/epidemiology , Cohort Studies , Humans , Injury Severity Score , Motor Vehicles , New South Wales/epidemiology , Quality of Life , Wounds and Injuries/epidemiologyABSTRACT
BACKGROUND: Actively involving patients and communities in health decisions can improve both peoples' health and the health system. One key strategy is Patient-Public Engagement (PPE). This scoping review aims to identify and describe PPE research in Sub-Saharan Africa; systematically map research to theories of PPE; and identify knowledge gaps to inform future research and PPE development. METHODS: The review followed guidelines for conducting and reporting scoping reviews. A systematic search of peer-reviewed English language literature published between January 1999 and December 2019 was conducted on Scopus, Medline (Ovid), CINAHL and Embase databases. Independent full text screening by three reviewers followed title and abstract screening. Using a thematic framework synthesis, eligible studies were mapped onto an engagement continuum and health system level matrix to assess the current focus of PPE in Sub-Saharan Africa. RESULTS: Initially 1948 articles were identified, but 18 from 10 Sub-Saharan African countries were eligible for the final synthesis. Five PPE strategies implemented were: 1) traditional leadership support, 2) community advisory boards, 3) community education and sensitisation, 4) community health volunteers/workers, and 5) embedding PPE within existing community structures. PPE initiatives were located at either the 'involvement' or 'consultation' stages of the engagement continuum, rather than higher-level engagement. Most PPE studies were at the 'service design' level of the health system or were focused on engagement in health research. No identified studies reported investigating PPE at the 'individual treatment' or 'macro policy/strategic' level. CONCLUSION: This review has successfully identified and evaluated key PPE strategies and their focus on improving health systems in Sub-Saharan Africa. PPE in Sub-Saharan Africa was characterised by tokenism rather than participation. PPE implementation activities are currently concentrated at the 'service design' or health research levels. Investigation of PPE at all the health system levels is required, including prioritising patient/community preferences for health system improvement.
Subject(s)
Medical Assistance , Patient Participation , Africa South of the Sahara , Government Programs , Humans , Mass ScreeningABSTRACT
BACKGROUND: Research has found health system improvement cannot be achieved without continuously engaging patients, their families and all stakeholders in the design, management and delivery of health care services. Following the Alma Ata declaration on Primary Health Care in 1978, the focus of health system improvement has tended to shift from physician or hospital-centric approaches to a more democratic vision of engaging the public and/or patients in the commissioning, planning, organisation, operation and control of the health care system. Thus, patient-public engagement (PPE) has become an important tool in health system improvement particularly for countries with poor health outcomes including countries in sub-Saharan Africa which carries an estimated 24% of the global burden of diseases in both human and financial costs. The aim of this scoping review is to describe and systematically map PPE research in sub-Saharan Africa, and then to synthesise this research in relation to key theories of PPE, identify the key drivers and barriers of PPE and to identify the knowledge gaps that may usefully be addressed by future research. METHODS: This scoping review will follow Arksey and O'Malley's best guidelines for conducting scoping reviews and also follow the standard guidelines for reporting using the Reporting Items for Systematic Reviews and Meta-Analysis extension for scoping reviews checklist. A systematic search of peer-reviewed English language literature published between January 1999 and December 2019 will be conducted on four databases: Scopus, CINAHL, Medline (Ovid) and Embase. The initial screening of titles and abstracts will be undertaken independently by two reviewers, followed by full text screening involving three independent reviewers. A thematic framework synthesis will be employed in the analysis of data to identify the various PPE interventions, and outcomes mapped to a framework of engagement continuum to understand its overall effect on health system improvement in sub-Saharan Africa. DISCUSSION: To our knowledge, this scoping review will be the first to systematically investigate PPE interventions implemented across sub-Saharan Africa, map the outcomes of identified interventions to a framework of engagement continuum and to understand its overall effect on health system improvement. Findings of this review will be published in an open-access peer review journal and disseminated at scientific conferences.
Subject(s)
Mass Screening , Patient Participation , Africa South of the Sahara , Humans , Meta-Analysis as Topic , Systematic Reviews as TopicABSTRACT
Purpose Little is currently known about how early intervention vocational rehabilitation (EIVR) works for people with newly acquired neurological conditions such as traumatic brain injury, acquired brain injury and spinal cord injury. This study aims, from a realist framework, to identify relevant literature and develop an initial programme theory to understand how EIVR might work for people experiencing acquired neurological disability. Realist reviews are ideally placed to address the identified knowledge gap as they assist in gaining a deeper understanding of how the intervention works, for whom it works best, and the contexts that promote the activation of desired outcomes. Methods We used a seven-step iterative process to synthesise literature using a realist approach. The steps included: development of initial programme theory, literature search, article selection, extracting and data organising, synthesis of evidence and programme theory refinement. We performed a literature search using the following databases: Cinahl, Embase, EMcare, Medline, PsychInfo and Scopus. Articles were selected if they contributed to the knowledge describing what is EIVR and how it works in newly acquired neurological conditions. Data were extracted and synthesised to develop a programme theory for EIVR. Results Following screening of 448 references, 37 documents were eligible for data extraction. We developed a refined programme theory of EIVR consisting of three contexts (prioritisation of exploring work options, return to work discussed as an option, and workplace support), nine mechanisms (ensuring rehabilitation teams' culture, fostering hope, exploring options, optimising self-efficacy, maintaining worker identity, staying connected, setting goals, engaging employer, and flexing roles) and three outcomes (confidence in ability to work, psychological adjustment, and engagement in solution focussed options). Conclusions This appears to be the first paper to explore how EIVR works, for whom and in what situations. We have produced a programme theory that may provide an initial understanding of EIVR following acquired neurological conditions.
Subject(s)
Publications , Rehabilitation, Vocational , HumansABSTRACT
BACKGROUND: Studies examining the impact of injury on health-related quality of life (HRQL) over time are necessary to understand the short- and long-term consequences of injury for population health. The aim of this systematic review was to provide an evidence update on studies that have measured HRQL over time in general injury populations using a generic (general) health state measure. METHODS: Studies conducted between 2010 and 2018 that assessed HRQL at more than one time point among general injury populations were eligible for inclusion. Two reviewers independently extracted information from each study on design, HRQL measure used, method of HRQL measure administration, timing of assessment(s), predictive variables, ability to detect change, and findings. Quality appraisals of each study were also completed by two reviewers using items from the RTI Item Bank on Risk of Bias and Precision of Observational Studies and the Guidelines for the Conduction of Follow-up Studies Measuring Injury-Related Disability. RESULTS: Twenty-nine studies (44 articles) that met the inclusion criteria were identified. HRQL was measured using 14 different generic measures; the SF-36, SF-12, and EQ-5D were used most frequently. A varying number of follow-up assessments were undertaken, ranging from one to five. Follow-up often occurred 12 months post-injury. Fewer studies (n = 11) examined outcomes two or more years post-injury, and only one to 10 years post-injury. While most studies documented improvements in HRQL over time since the injury event, study populations had not returned to pre-injury status or reached general population norm HRQL values at post-injury follow-ups. CONCLUSIONS: Since 2010 there has been a substantial increase in the number of studies evaluating the HRQL of general injury populations. However, significant variability in study design continues to impede quantification of the impact of injury on population health over time. Variation between studies is particularly evident with respect to timing and number of follow-up assessments, and selection of instruments to evaluate HRQL.
Subject(s)
Quality of Life , Research Design/standards , Wounds and Injuries/rehabilitation , Adolescent , Adult , Aged , Child , Child, Preschool , Disabled Persons/psychology , Female , Follow-Up Studies , Health Status Indicators , Humans , Male , Middle Aged , Wounds and Injuries/psychology , Young AdultABSTRACT
OBJECTIVES: People who have experienced a work-related injury can experience further work injuries over time. This study examines predictors of subsequent work-related injuries over 24 months among a cohort of injured workers. METHODS: Participants were those recruited to the earlier Prospective Outcomes of Injury Study (POIS) who had a work-related injury (the 'sentinel' injury). Data from POIS participant interviews were combined with administrative data from the Accident Compensation Corporation (New Zealand's no-fault universal injury insurer) and hospital discharge data. Modified Poisson regression modelling was used to examine whether presentinel injury sociodemographic and health, sentinel injury or presentinel injury work-related factors predicted subsequent work-related injuries. RESULTS: Over a third of participants (37%) had at least one subsequent work-related injury in 24 months. Factors associated with an increased risk of work-related subsequent injury included being in a job involving carrying or moving heavy loads more than half the time compared with those in jobs that never involved such tasks (RR 1.42, 95% CI 1.01 to 2.01), having an inadequate household income compared with those with an adequate household income (RR 1.33, 95% CI 1.02 1.74) and being aged 50-64 years compared with those aged 30-49 years (RR 1.25, 95% 1.00 to 1.57). CONCLUSION: Subsequent work-related injuries occur frequently, and presenting with a work-related injury indicates a potentially important intervention point for subsequent injury prevention. While the strength of associations were not strong, factors identified in this study that showed an increased risk of subsequent work-related injuries may provide a useful focus for injury prevention or rehabilitation attention.