Laying the foundations of community engagement in Aboriginal health research: establishing a community reference group and terms of reference in a novel research field

Background Community engagement or community involvement in Aboriginal health research is a process that involves partnering, collaborating and involving Aboriginal and Torres Strait Islander people or potential research participants to empower them to have a say in how research with Aboriginal communities is conducted. In the context of Aboriginal health, this is particularly important so that researchers can respond to the priorities of the community under study and conduct research in a way that is respectful of Aboriginal cultural values and beliefs. One approach to incorporating the principals of community engagement and to ensure cultural oversight and guidance to projects is to engage a community reference group. The aim of this study was to describe the process of establishing an Aboriginal community reference group and terms of reference. The community reference group was established to guide the research activities of a newly formed research collaboration aiming to to develop osteoarthritis care that meets the needs of Aboriginal and Torres Strait Islander people in Australia. Methods Adopting a Participatory Action Research approach, this two-phase study was conducted in Victoria, Australia. In phase one, semi-structured research yarns (a cultural form of conversation used as a data gathering tool) were conducted collaboratively by Aboriginal and non-Aboriginal co-investigators to explore Aboriginal health stakeholder perspectives on establishing a community reference group and terms of reference. In phase two, recommendations in phase one were identified to invite members to participate in the community reference group and to ratify the terms of reference through a focus group. Data were analyzed using a framework analysis approach. Results Thirteen people (eight female, four male) participated in phase one. Participants represented diverse professional backgrounds including physiotherapy, nursing, general practice, health services management, hospital liaison, cultural safety education, health research and the arts. Three themes were identified in phase one; Recruitment and Representation (trust and relationships, in-house call-outs, broad-spectrum expertise and Aboriginal majority); Purpose (community engagement, research steering, knowledge dissemination and advocacy) and; Function and Logistics (frequency and format of meetings, size of group, roles and responsibilities, authority, communication and dissemination). In phase two, six Aboriginal people were invited to become members of the community reference group who recommended changes which were incorporated into the seven domains of the terms of reference. Conclusion The findings of this study are captured in a 10-step framework which describes practical strategies for establishing a community reference group and terms of reference in Aboriginal health research

Understanding the impact and tackling the burden of osteoarthritis for Aboriginal and Torres Strait Islander people

Objective The aim of this study was to understand and describe the lived experience of Aboriginal and Torres Strait Islander people with osteoarthritis. Methods Qualitative study guided by cultural security, which ensures that research is conducted in a way that will not compromise the cultural values, beliefs, and expectations of Aboriginal and Torres Strait Islander people. Participants were purposively sampled through the networks of project staff. Research yarns (a cultural form of conversation used as a data gathering tool) were conducted with 25 Aboriginal and Torres Strait Islander adults with self-reported osteoarthritis in Western Australia and Victoria, Australia. Data were analyzed using a framework approach and presented through composite storytelling (hypothetical stories representing an amalgam of participants’ experiences). Results Two composite stories were constructed to reflect themes relating to beliefs and knowledge, impact, coping, and health care experiences. Common beliefs held by participants were that osteoarthritis is caused by previous physically active lifestyles. Many participants feared for their future, increasing disability and needing a wheelchair. Pain associated with osteoarthritis impacted daily activities, sleep, work, family, and social life and cultural activities. Multidimensional impacts were often experienced within complex health or life circumstances and associated with increased anxiety and depression. Most participants reported negative health care experiences, characterized by poor patient–provider communication. Conclusion Our findings highlight that osteoarthritis is a multidimensional issue for Aboriginal and Torres Strait Islander people that permeates all aspects of life and highlights the need for integrated, multidisciplinary care that is culturally informed and individualized to patient need

Latent Class Growth Analysis predicts long term pain and function trajectories in total knee arthroplasty: A study of 689 patients

Objective: To characterize groups of subjects according to their trajectory of knee pain and function over 1 to 5 years post total knee arthroplasty (TKA). Methods: Patients from one centre who underwent primary TKA (N = 689) between 2006 and 2008. The Knee Society Score (KSS) was collected pre-operatively and annually post-operatively. Latent Class Growth Analysis (LCGA) was used to classify groups of subjects according to their trajectory of knee pain and function over 1-5 years post-surgery. Results: LCGA identified a class of patients with persistent moderate knee pain (22.0%). Predictors (OR, 95% CI) of moderate pain trajectory class membership were pre-surgery SF12 mental component summary (MCS) per 10 points (0.65, 0.54-0.79) and physical component summary (PCS) per 10 points (0.50, 0.33-0.76), Charlson Comorbidity Index (CCI) one (1.70, 1.07-2.69) and =two (2.82, 1.59-4.81) and the absence of computer-navigation (2.26, 1.09-4.68). LCGA also identified a class of patients with poor function (23.0%). Predictors of low function trajectory class membership were, female sex (3.31, 1.95-5.63), advancing age per 10 years (2.27, 1.69-3.02), pre-surgery PCS per 10 points (0.50, 0.33-0.74), obesity (1.69, 1.05-2.72), morbid obesity (3.12, 1.55-6.27) and CCI =two (2.50, 1.41-4.42). Conclusions: Modifiable predictors of poor response to TKA included baseline co-morbidity, physical and mental well-being and obesity. This provides useful information for clinicians in terms of informing patients of the expected course of longer term outcomes of TKA and for developing prediction algorithms that identify patients in whom there is a high likelihood of poor surgical response

Attitudes of patients and surgeons towards sham surgery trials: A protocol for a scoping review of attributes to inform a discrete choice experiment

Introduction In order to properly evaluate the efficacy of orthopaedic procedures, rigorous, randomised controlled sham surgery trial designs are necessary. However, randomised controlled trials (RCTs) for surgery involving a placebo are ethically debated and difficult to conduct with many failing to reach their desired sample size and power. A review of the literature on barriers and enablers to recruitment, and patient and surgeon attitudes and preferences towards sham surgery trials, will help to determine the characteristics necessary for successful recruitment. Methods and analysis This review will scope the diverse literature surrounding sham surgery trials with the aim of informing a discrete choice experiment to empirically test patient and surgeon preferences for different sham surgery trial designs. The scoping review will be conducted in accordance with the methodological framework described in Arksey and O'Malley (2005) and reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols extension for Scoping Reviews. The review will be informed by a systematic search of Medline, Embase, PsycInfo, CINAHL and EconLit databases (from database inception to 21 June 2019), a Google Scholar search, and hand searching of reference lists of relevant studies or reviews. Studies or opinion pieces that involve patient, surgeon or trial characteristics, which influence the decision to participate in a trial, will be included. Study selection will be carried out independently by two authors with discrepancies resolved by consensus among three authors. Data will be charted using a standardised form, and results tabulated and narratively summarised with reference to the research questions of the review. Ethics and dissemination The findings from this review will inform the design of a discrete choice experiment around willingness to participate in surgical trials, the outcomes of which can inform decision and cost-effectiveness models of sham surgery RCTs. The qualitative information from this review will also inform patient-centred outcomes research. The review will be published in a peer-reviewed journal. Trial registration number CRD42019133296

Life or limb: an international qualitative study on decision making in sarcoma surgery during the COVID-19 pandemic.

The COVID-19 pandemic is unprecedented as a global crisis over the last century. How do specialist surgeons make decisions about patient care in these unprecedent times? Between April and May 2020, we conducted an international qualitative study. Sarcoma surgeons from diverse global settings participated in 60 min interviews exploring surgical decision making during COVID-19. Interview data were analysed using an inductive thematic analysis approach. Participants represented public and private hospitals in 14 countries, in different phases of the first wave of the pandemic: Australia, Argentina, Canada, India, Italy, Japan, Nigeria, Singapore, Spain, South Africa, Switzerland, Turkey, UK and USA. From 22 invited sarcoma surgeons, 18 surgeons participated. Participants had an average of 19 years experience as a sarcoma surgeon. 17/18 participants described a decision they had made about patient care since the start of the pandemic that was unique to them, that is, without precedence. Common to 'unique' decisions about patient care was uncertainty about what was going on and what would happen in the future (theme 1: the context of uncertainty), the impact of the pandemic on resources or threat of the pandemic to overwhelm resources (theme 2: limited resources), perceived increased risk to self (theme 3: duty of care) and least-worst decision making, in which none of the options were perceived as ideal and participants settled on the least-worst option at that point in time (theme 4: least-worst decision making). In the context of rapidly changing standards of justice and beneficence in patient care, traditional decision-making frameworks may no longer apply. Based on the experiences of surgeons in this study, we describe a framework of least-worst decision making. This framework gives rise to actionable strategies that can support decision making in sarcoma and other specialised fields of surgery, both during the current crisis and beyond