Disability Ethics Research Articles

A Review of Medical Ethics in Orthopaedic Surgery: Current Foci and Future Considerations.

➢ Medical ethics education is a required component of orthopaedic surgery resident training per the Accreditation Council for Graduate Medical Education (ACGME) guidelines, although no standardized curriculum currently exists.➢ Beyond the 4 principles of bioethics (autonomy, beneficence, nonmaleficence, justice), additional ethical concepts relevant to orthopaedic care include utilitarianism, deontology, virtue ethics, moral intuitionism, microethics, and narrative ethics.➢ Ethical themes identified in the literature relevant to orthopaedic surgery include the ethics involved in medical decision-making, use of new technologies, caring for vulnerable patients, performing high-stakes procedures, the impacts of trainee status on patient care, and patient attitude regarding conflict of interest.➢ Ethical themes that we sought to identify in the literature but found lacking include the ethics of providing orthopaedic care in low-resource settings, orthopaedics entrepreneurship, disability ethics, trainee mistreatment by their supervisors, and the ethics involved in the recognition and reporting of child and elder abuse.

Impact of Mānuka Honey on Symptoms and Quality of Life in Individuals With Functional Dyspepsia: Protocol for a Feasibility Randomized Controlled Trial.

Functional dyspepsia is a common gastrointestinal condition that reduces the quality of life and increases health care costs. The lack of well-defined causes limits effective treatments. Consumers report using mānuka honey to treat gastrointestinal symptoms, although clinical evidence supporting such use is limited. Preclinical studies suggest its unique bioactive compounds may reduce gastrointestinal inflammation. Recently, 3,6,7-trimethyllumazine (Lepteridine), a natural pteridine in mānuka honey, was shown to inhibit enzymes involved in gastrointestinal inflammation in in vitro studies. Therefore, Lepteridine-standardized mānuka honey may deliver digestive health benefits. The aim of this feasibility study is to gather the data required to estimate sample size and support study logistics to design future trials. The primary objective will be preliminary assessments of the impact of Lepteridine-standardized mānuka honey on symptom severity and the quality of life in participants with mild-to-moderate functional dyspepsia. Other feasibility objectives include assessing the biological responses to mānuka honey standardized to medium and high levels of Lepteridine and measuring mānuka honey-derived metabolites in blood and urine. This is a 3-arm, parallel, controlled, double-blind, randomized feasibility study. A total of 75 healthy adults with symptoms of functional dyspepsia (Rome IV criteria) and mild-to-moderate dyspepsia severity (Short Form Leeds Dyspepsia Questionnaire) were recruited between October 2022 and September 2023. Participants were randomized into one of three groups: (1) mānuka honey standardized to contain 10 mg/kg Lepteridine, (2) mānuka honey standardized to contain 40 mg/kg Lepteridine, or (3) honey maple flavored syrup control. After a 2-week lead-in period, participants consumed 10 g of allocated intervention twice daily for 6 weeks. Throughout the study, participants completed daily bowel movement diaries and validated weekly questionnaires about their gastrointestinal symptoms and quality of life. Stool samples and 3-day diet records were collected at baseline and the end of the intervention. Blood samples were collected at baseline, weeks 2 and 4, and at the end of the intervention. In addition, 6 healthy participants without symptoms of functional dyspepsia were recruited to undergo an acute 5-hour assessment for the appearance of Lepteridine and related metabolites in plasma and urine following consumption of Lepteridine-standardized mānuka honey. The study was approved by the Northern B Health and Disability Ethics Committee. Initial analysis includes 68 participants, with laboratory and data analyses being undertaken as of March 2024. The results of the primary and secondary outcomes will be published in peer-reviewed journals. This study will provide essential information on the potential efficacy and suitability of Lepteridine-standardized mānuka honey for designing future clinical trials investigating its effect in treating symptoms of functional dyspepsia. Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12622001140741p; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=384094. DERR1-10.2196/66417.

Prospective observational study to assess the performance accuracy of clinical decision rules in children presenting to emergency departments with possible cervical spine injuries: the Study of Neck Injuries in Children (SONIC).

Paediatric cervical spine injury (CSI) is uncommon but can have devastating consequences. Many children, however, present to emergency departments (EDs) for the assessment of possible CSI. While imaging can be used to determine the presence of injuries, these tests are not without risks and costs, including exposure to radiation and associated life-time cancer risks. Clinical decision rules (CDRs) to guide imaging decisions exist, although two of the existing rules, the National Emergency X-Radiography Low Risk Criteria and the Canadian C-Spine Rule (CCR), focus on adults and a newly developed paediatric rule from the Pediatric Emergency Care Applied Research Network (PECARN) is yet to be externally validated. This study aims to externally validate these three CDRs in children. This is a multicentre prospective observational study of children younger than 16 years presenting with possible CSI following blunt trauma to 1 of 14 EDs across Australia, New Zealand and Singapore. Data will be collected on presenting features (history, injury mechanism, physical examination findings) and management (diagnostic imaging, admission, interventions, outcomes). The performance accuracy (sensitivity, specificity, negative and positive predictive values) of three existing CDRs in identifying children with study-defined CSIs and the specific CDR defined outcomes will be determined, along with multiple secondary outcomes including CSI epidemiology, investigations and management of possible CSI. Ethics approval for the study was received from the Royal Children's Hospital Melbourne Human Research Ethics Committee in Australia (HREC/69436/RCHM-2020) with additional approvals from the New Zealand Human and Disability Ethics Committee and the SingHealth Centralised Institutional Review Board. Findings will be disseminated through peer-reviewed publications and future management guidelines. Registration with the Australian New Zealand Clinical Trials Registry prior to the commencement of participant recruitment (ACTRN12621001050842). 50% of expected patients have been enrolled to date.

Outcomes of participating in the Let’s Play programme on 0–5-year-old autistic children’s engagement and caregivers’ stress: study protocol for a parallel randomised controlled trial

IntroductionVast empirical evidence highlights the importance of early identification, diagnosis and support for autistic children. Caregivers of autistic children often experience high levels of psychological distress; hence there is a need for parallel child and caregiver support. Autism New Zealand’s Let’s Play programme is a caregiver-mediated, community-based programme based on the principles of developmental and relational interventions (henceforth, developmental). Developmental interventions are evidence-based supports designed to enhance children’s learning within the context of developmentally appropriate, naturalistic settings (eg, everyday routines, play). We aim to evaluate the effects of the Let’s Play programme on autistic children’s engagement and caregiver stress.Methods and analysisThis study will be a single-blind (rater) randomised controlled trial with two parallel arms: immediate programme access (intervention) versus a waitlist control. Participants will be 64 caregivers of children aged 0–5 years with diagnosed or suspected autism, allowing for 20% attrition, based on power calculations. The Let’s Play programme will be delivered over 9 weeks using a combination of small group workshops and in-home coaching. Primary outcome variables include child engagement and caregiver stress. Caregivers will complete measures at three time points (baseline, immediately post-programme and at the 6-month follow-up), and effectiveness will be analysed using generalised estimating equation models and intention-to-treat and per protocol analyses.Ethics and disseminationThis trial was approved by Aotearoa New Zealand Ministry of Health’s Health and Disability Ethics Committee (2022 FULL 13041). Findings will be communicated nationally and internationally via conferences, journal publications and stakeholder groups (eg, service providers for autistic children). Results will be shared regardless of magnitude or direction of effect.Trial registration numberACTRN12622001139763.

Mainstreaming Disability Theology: A Review Essay

ABSTRACTThis essay offers both a review of recent texts in disability studies and religious ethics as well as appreciation in the guild's growing interest in disability ethics. When the Journal of Religious Ethics (JRE) solicited this essay, I felt a sense that recognition of the important work that disability ethics offers to our guild had arrived. Reviewing works by Julia Watts Belser, William C. Gaventa, Lisa D. Powell, Devan Stahl, and Erin Raffety, this essay begins with a disability primer and then moves to the texts under review. These texts present the ongoing challenges surrounding disability justice and the hopes and joys that characterize the human spirit in making a way out of no way.

:Disability Ethics and Preferential Justice: A Catholic Perspective

:<i>Disability Ethics and Preferential Justice: A Catholic Perspective</i>

Differences as potentials: A posthuman re-envisioning of disability and mobility.

Drawing on a posthuman onto-epistemology, this paper explores movements of bodies labelled-as-disabled as creative 'choreographies' that are coproduced through the coming together of multiple material, social, discursive and affective forces across time-spaces. The purpose is to challenge thinking as usual towards re-envisioning differences as potentials rather than deficits. To do so, we consider how disability can move deficit-thinking and how mobility can be put to work to rethink disability. Movement and mobility in relation to disability are frequently discussed in terms of bodily deficits and/or disabling access barriers. Deficit-thinking separates people into categories of disabled or so-called 'abled' wherein reforms are oriented to erasure of differences through providing disabled people with access to a normal/ized life. In this posthuman analysis we advance an affirmative way of thinking about differences by recursively retheorizing disability through movement and retheorizing movement through disability. To do so we present three 'mobility experiments' generated from a recent study conducted with five youth partners who identified as disabled. Within the experiments, we position creative mobilities as micro-activist becomings that suggest avenues for celebrating differences towards instigating radical change. We conclude with a discussion of posthuman disability ethics and the implications of our analysis for thinking and doing differently in healthcare and beyond.

Azithromycin to prevent acute lower respiratory infections among Australian and New Zealand First Nations and Timorese children (PETAL trial): study protocol for a multicentre, international, double-blind, randomised controlled trial

IntroductionAcute lower respiratory infections (ALRIs) remain the leading causes of repeated hospitalisations among young disadvantaged Australian and New Zealand First Nations and Timorese children. Severe (hospitalised) and recurrent ALRIs in...

P0730 Inflammatory Bowel Disease Lifestyle Food and Exercise (IBDLiFE) study: a randomized controlled trial to investigate the effectiveness of a personalised diet and physical activity intervention for adults with inactive IBD in Aotearoa, New Zealand

Abstract Background People with inflammatory bowel disease (IBD) are at higher risk of metabolic diseases that may respond to changes in diet and physical activity. Whether these lifestyle changes are possible and effective in IBD is unclear. This study aims to investigate the effectiveness of personalised diet and physical activity advice on metabolic disease risk factors in adults with inactive IBD. Methods A randomised controlled trial was conducted at three hospitals in New Zealand (NZ) from May 23 to August 24. Eligible participants (aged &amp;gt;18 years, body mass index (BMI) ≥ 25 kg/m2, low fibre intake (&amp;lt;25g/day), stable medical therapy, and could exercise) were randomised to one of two 6-month interventions: dietitian-delivered generic or personalised physical activity and heart-healthy diet advice. The primary outcome was body fat change and secondary outcomes included disease activity, faecal calprotectin, self-reported physical activity, and dietary intake (3-day food diaries). Multivariable regression models investigated between group differences adjusted for age, sex, and baseline values (significance p&amp;lt;0.05). Dietary intake and physical activity were adjusted for seasonality and disease activity. The study was approved by the NZ Health and Disability Ethics Committee (ref 2022 EXP 13602). Results A total of 64 participants were randomised and 51 (80%) completed the 6-month intervention and had complete datasets. Participants were median age 47 (LQ, UQ 37, 55), 59% female, 91% NZ European ethnicity, 61% had Crohn’s disease, 75% had faecal calprotectin &amp;lt; 100µg/g, 80% were non-smokers, and 81% on maintenance medical therapy including 44% on biologics. The intervention group had a non-significant decrease in fat mass (-188g; 95%CI: -1606, 1230) compared to the control group and statistically significant changes in dietary intake: increased fruit (0.5 serves/day; 95%CI: 0.1, 1.0) and dietary fibre (3.1 g/1000kcal/day; 95%CI: 1.1, 5.1), and reduced discretionary food and drink (-1.7 serves/day; 95%CI: -3.0, -0.3) and sodium (-911 mg/day; 95%CI: -1783, -40). Physical activity increased non-significantly by 188 total MET-mins/week (95%CI: -3336, 3711). Disease activity indices and faecal calprotectin did not significantly alter. Conclusion Dietitian-delivered personalised compared to generic advice, led to significant changes in dietary intake associated with reduced metabolic disease risk in patients with inactive IBD. However, the lack of significant changes in fat mass between groups is likely due to the absence of increased physical activity or reduced energy intake. Nonetheless, this study shows that adults with inactive IBD can make lifestyle changes without worsening disease activity.

Case conference and a para case conference: asking different questions about disability and structural ableism

What might it mean to change the questions we ask during clinical case conferences and to ask different kinds of questions, both in case conferences and more broadly in our...

Oral health-related quality of life in Northland Māori children and adolescents with Polynesian amelogenesis imperfecta.

Amelogenesis Imperfecta (AI) is a hereditary developmental disorder of tooth enamel with few known variants with differing characteristics, depending on where in the amelogenesis process an error has occurred. Polynesian AI (or Poly AI) is prevalent among people of Polynesian descent and is prevalent among New Zealand Māori. While the impact of AI on the quality of life has been reported in some studies, however, the role of Poly AI on oral health-related quality of life (OHRQoL) is not known. This study explores OHRQoL among New Zealand Māori with and without AI. A cross-sectional study was undertaken, with ethical approval obtained from the New Zealand Health and Disability Ethics Committee. 30 Māori children and adolescents with Poly AI and 60 Māori children and adolescents with no Poly AI as the comparison group matched by age and sex, were randomly selected and recruited participated in the study. OHRQoL was measured using the 19-item COHIP-SF. Statistically significant differences were observed in the OHRQoL between those with Poly AI and the comparison group. Linear regression analyses controlling for age and deprivation showed significantly poorer OHRQoL among those with Poly AI than in those with no Poly AI. The study findings highlight poorer OHRQoL among Māori children with Poly AI, emphasizing the need for early detection and management of the condition and the importance of providing appropriate training in diagnosing Poly AI and managing hypersensitivity. Further research among Polynesian populations is needed to understand the impact OHRQoL among those with Poly AI.

Development of gout in people with asymptomatic hyperuricemia: study protocol for a 5-year prospective cohort

IntroductionThe central biochemical cause of gout is hyperuricemia (elevated serum urate levels). Ultrasound features of monosodium urate (MSU) crystal deposition are common in people with asymptomatic hyperuricemia. However, it is...

Experiencing the Craft and Ethical Impact of Young Adult Disability Fiction

Scholars like Ria Cheyne and Sami Schalk have argued that the imaginative and ethical structures of fiction can, if effectively leveraged, provide readers a new orientation to, or understanding of, difference. Advancing recent work that identifies methods to assess the material reception of disability literature, the article demonstrates how general audiences perceive both the craft and ethical import of fiction. Beverly Butler’s 1962 novel Light a Single Candle is one example of young adult literature that has resonated with audiences over time. Literary disability studies and narrative theory clarify the range of storytelling techniques that make the novel compelling: Butler, a blind author herself, carefully creates distances among reader, narrator, and character only to close them; she uses the physical description of blind modality to represent social experience; and she installs characters that model different disability ethics. Systematically analyzing the novel’s online reviews, the article shows that audiences sense Butler’s storytelling techniques in ways that open up spaces for mindful reflection on the nature of impairment and the construction of disability.

Discerning personhood through lena‐dena: Disability professionals, ethics, and communication

Abstract This article looks at practices of discernment in disability spaces in India by analyzing (hierarchical) relational contexts in which disability professionals and disabled people in India interact. We argue that discernment, which we explore through lena‐dena (giving and taking), allows us to analyze the ethical stakes of processes of communication, interpreting, and facilitation. Vaidya analyzes how special educators make broad discernments about intellectually disabled people by interpreting their unconventional and nonlinguistic communicative cues. In contrast, Friedner examines how speech and language therapists that work with deaf children make narrow discernments regarding what counts as language and perform the labor of training deaf children to communicate in the normatively correct way—that is, using speech. While disability professionals produce specific kinds of personhood for disabled people through their practices of discernment, they also end up discerning themselves in the process as professionals with difficult yet rewarding jobs. We conclude by discussing a program for individuals with intellectual disabilities where both authors conducted ethnographic research wherein disability professionals discerned disabled people as having social needs and desires on par with nondisabled people and created enabling environments, scaffolded activities, and facilitated conversations to produce and enable complex personhood for them.

Exploring the early experiences of assisted dying in Aotearoa New Zealand: a qualitative study protocol

IntroductionIncreasing numbers of jurisdictions are legalising assisted dying (AD). Developing research protocols to study the experiences and outcomes of legislation is imperative. AD is a topic that, by nature of...

Nourishing the Infant Gut Microbiome to Support Immune Health: Protocol of SUN (Seeding Through Feeding) Randomized Controlled Trial

BackgroundThe introduction of complementary foods during the first year of life influences the diversity of the gut microbiome. How this diversity affects immune development and health is unclear.ObjectiveThis study evaluates the effect of consuming kūmara or kūmara with added banana powder (resistant starch) compared to a reference control at 4 months post randomization on the prevalence of respiratory tract infections and the development of the gut microbiome.MethodsThis study is a double-blind, randomized controlled trial of mothers and their 6-month-old infants (up to n=300) who have not yet started solids. Infants are randomized into one of 3 groups: control arm (C), standard kūmara intervention (K), and a kūmara intervention with added banana powder product (K+) to be consumed daily for 4 months until the infant is approximately 10 months old. Infants are matched for sex using stratified randomization. Data are collected at baseline (prior to commencing solid food) and at 2 and 4 months after commencing solid food (at around 8 and 10 months of age). Data and samples collected at each timepoint include weight and length, intervention adherence (months 2 and 4), illness and medication history, dietary intake (months 2 and 4), sleep (diary and actigraphy), maternal dietary intake, breast milk, feces (baseline and 4 months), and blood samples (baseline and 4 months).ResultsThe trial was approved by the Health and Disability Ethics Committee of the Ministry of Health, New Zealand (reference 20/NTA/9). Recruitment and data collection did not commence until January 2022 due to the COVID-19 pandemic. Data collection and analyses are expected to conclude in January 2024 and early 2025, respectively. Results are to be published in 2024 and 2025.ConclusionsThe results of this study will help us understand how the introduction of a specific prebiotic complementary food affects the microbiota and relative abundances of the microbial species, the modulation of immune development, and infant health. It will contribute to the expanding body of research that aims to deepen our understanding of the connections between nutrition, gut microbiota, and early-life postnatal health.Trial RegistrationAustralian New Zealand Clinical Trials Registry ACTRN12620000026921; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=378654International Registered Report Identifier (IRRID)DERR1-10.2196/56772

Disability Ethics and Education in the Age of Artificial Intelligence: Identifying Ability Bias in ChatGPT and Gemini

Disability Ethics and Education in the Age of Artificial Intelligence: Identifying Ability Bias in ChatGPT and Gemini

Easing the way to achieving target serum urate in people with gout: protocol for a non-inferiority randomised strategy trial using an allopurinol dosing model in Aotearoa/New Zealand (the Easy-Allo Study)

IntroductionGout is one of the most common forms of arthritis worldwide. Gout is particularly prevalent in Aotearoa/New Zealand and is estimated to affect 13.1% of Māori men, 22.9% of Pacific...

Gastrointestinal delivery of bitter hop extract reduces appetite and food cravings in healthy adult women undergoing acute fasting

BackgroundDietary restrictions or reductions such as fasting for weight loss are often difficult to adhere to due to increased appetite and food cravings. Recently, gastrointestinal delivery of bitter hops has been shown to be effective at reducing appetite in men. Our aim was to determine the effect of a bitter hop extract on appetite and cravings in women, using a 24 h, water-only fast. MethodsThis was a randomized, double-blind, cross-over treatment study. Thirty adult women were recruited and required to fast for 24 h from 1800 h to 1800 h on three occasions and given an ad libitum meal to break each fast. Treatments of either a placebo or one of two doses (high dose; HD: 250 mg or low dose; LD: 125 mg) of a bitter hop-based appetite suppressant (Amarasate®) were given twice per day at 16 and 20 h into the fast. ResultsThe HD and LD treatment groups exhibited a significant (p < 0.05) reduction in appetite and cravings for food when compared to the placebo control. Two participants reported loose stools and one reported heartburn while on the HD treatment, and one participant reported loose stools while on the LD treatment. ConclusionThese data suggest that appetite suppressant co-therapy may be useful in reducing hunger during fasting in women and shows that gastrointestinal delivery of bitter compounds may also be an effective method of reducing cravings for food.This trial received ethical approval from the Northen B New Zealand Human Disability and Ethics committee (Northern B Health and Disability Ethics Committee (2022 EXP 10995) and was prospectively registered with the Australian New Zealand Clinical Trial Registry (ACTRN12622000107729).

Deepening Our Understanding of Disability Ethics.

Deepening Our Understanding of Disability Ethics.