Healing conversations: Developing a practical framework for clinical communication between Aboriginal communities and healthcare practitioners

In recognition of the ongoing health disparities experienced by Aboriginal and Torres Strait Islander peoples (hereafter Aboriginal), this scoping review explores the role and impact of the clinical communication process on Aboriginal healthcare provision. A medical education lens is applied, looking at the utility of a tailored clinical communication framework to assist health practitioners work more effectively with Aboriginal peoples and communities. The initial framework, building on existing communication guides, proposes four domains: content, process, relational and environmental. It places emphasis on critical self-reflection of the health practitioner’s own cultural identity and will be guided by collective Aboriginal world-views in select Australian settings. Using a two-eyed seeing approach the framework will be developed and tested in health professional education. The aim of this research journey is to enable health practitioners to have more effective healthcare conversations with Aboriginal peoples, working toward more socially just and equitable healthcare interactions and outcome

Improving the validity of Script Concordance Testing by optimising and balancing items

Background: A script concordance test (SCT) is a modality for assessing clinical reasoning. Concerns had been raised about the plausible validity threat to SCT scores if students deliberately avoided the extreme answer options to obtain higher scores. The aims of the study were firstly to investigate whether students’ avoidance of the extreme answer options could result in higher scores, and secondly to determine whether a ‘balanced approach’ by careful construction of SCT items (to include extreme as well as median options as model responses) would improve the validity of an SCT. Methods: Using the paired sample t-test, the actual average student scores for 10 SCT papers from 2012–2016 were compared with simulated scores. The latter were generated by recoding all ‘2’ responses to ‘1’ and ‘+2’ responses to ‘+1’ for the whole and bottom 10% of the cohort (simulation 1), and scoring as if all students had chosen ‘0’ for their responses (simulation 2). The actual average and simulated average scores in 2012 (before the ‘balanced approach’) were compared with those from 2013–2016, when papers had a good balance of modal responses from the expert reference panel. Results: In 2012, a score increase was seen in simulation 1 in the third-year cohort, from 50.2 to 55.6% (t [10] = 4.818; p = 0.001). Since 2013, with the ‘balanced approach’, the actual SCT scores (57.4%) were significantly higher than scores in both simulation 1 and simulation 2 (46.7% and 23.9% respectively). Conclusions: When constructing SCT examinations, apart from the rigorous pre-examination optimisation, it is desirable to achieve a balance between items that attract extreme responses and those that attract median response options. This could mitigate the validity threat to SCT scores, especially for the low-performing students who have previously been shown to only select median responses and avoid the extreme responses

The missed disease? Endometriosis as an example of ‘undone science’

open access articleEndometriosis is a chronic gynaecological condition which has been referred to as the ‘missed disease’ due to its unclear aetiology and inconsistencies in its diagnosis and management. Unlike other long-term conditions such as diabetes and asthma, endometriosis has remained largely ignored in government policy and research funding globally. Drawing on scholarship from the growing field of ‘ignorance studies’, this paper considers how ambiguity around endometriosis is part of a wider constellation of discursive, material and political factors which enrol certain forms of knowledge whilst silencing, ignoring or marginalizing other forms of knowledge. It uses concepts of ‘undone science’ and ‘wilful ignorance’ to explore how an absence of knowledge on endometriosis is a result of structural, cultural and political processes and forces which privilege certain voices and communities. This paper suggests that the association of endometriosis with historically specific constructions of menstruation and women’s pain has informed contemporary imaginaries around the condition, including ideas about women being somehow accountable for their own illnesses. Applying an ignorance lens demonstrates how the legacy of invisibility of endometriosis shapes its place in the present political and social arena, and is reflective of a process of undone science. The paper concludes by arguing that the social and political significance of endometriosis as a chronic, life-limiting condition which affects millions of women globally continues to need attention, illumination and critique

The Lived Experience of Klinefelter Syndrome: A Narrative Review of the Literature

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The emergence and use of expanded carrier screening in gamete donation: a new form of repro-genetic selection

With the continued expansion and commercialisation of fertility treatments, the selection and matching of donors has become more sophisticated and technologised. As part of this landscape, new form of genetic screening: ‘expanded carrier screening’ (ECS) is being offered as a technique to avoid the risk of donors passing on genetic conditions to future offspring. Allowing donors to be tested for hundreds of genetic conditions simultaneously, ECS marks a considerable departure from traditional ‘family history’ models of screening, which rely on individual’s knowledge of family health. There is growing evidence of a drive towards the use of ECS within the fertility sector and a growing number of clinics are offering it for a fee, as part of an egg or sperm donation cycle or as an add-on to IVF treatment. In this paper we use methods of critical reflection to synthesise data from two studies to explore how ECS is being used to avoid genetic risk in IVF treatment using donor gametes. We suggest that ECS is a new form of repro-genetic selection – a selective reproductive technology - with specific and important implications for donors, recipients and clinicians, and with the potential to reconfigure the scope and application of gamete donation. We examine these implications and conclude that the existing policy blind spot relating to this development in fertility treatment practice needs to be urgently addressed

Asthma management in British South Asian children: an application of the candidacy framework to a qualitative understanding of barriers to effective and accessible asthma care

Abstract Background In the UK, people of South Asian origin with asthma experience excess morbidity, with hospitalisation rates three times those of the majority White population and evidence suggests that South Asian children with asthma are more likely to suffer uncontrolled symptoms and hospital admissions with acute asthma compared to White British children. This paper draws on data from The Management and Interventions for Asthma (MIA) study to identify the operation of barriers to optimal care and good asthma control for South Asian children. Methods The MIA study followed a multi-phase, iterative, participatory design, underpinned by the socio-ecological model. Findings presented here are from face-to face, semi-structured interviews with South Asian (Indian, Pakistani and Bangladeshi origin) parents and carers of a child with asthma (n = 49). Interviews were conducted in English or relevant South Asian languages using specially trained community facilitators. Data were transcribed verbatim and analysed according to the principles of interpretive thematic analysis, facilitated by the use of NVivo. Results Seven dimensions of candidacy are identified: identification of candidacy; navigation; the permeability of asthma services; appearances at health services; adjudications; offers and resistance and operating conditions in the local production of candidacy. The analysis demonstrates several ways in which a potential lack of alignment between the priorities and competencies of British South Asian families and the organization of health services combine to create vulnerabilities and difficulties in effectively managing childhood asthma. Conclusions Healthcare systems have a responsibility to develop services that are sensitive and appropriate to the needs of their communities. In South Asian communities, further efforts are required to raise awareness of symptoms and effectively communicate how, when and where to seek help for children. There is a need for improved diagnosis and consistent, effectively communicated information, especially regarding medication. Parents made several suggestions for improving services: presentations about asthma at easily accessible community venues; an advice centre or telephone helpline to answer queries; opportunities for sharing experiences with other families; having information provided in South Asian languages; longer GP appointments; extended use of asthma nurses; and better education for healthcare professionals to ensure consistency of care and advice

Men, chronic illness and healthwork: accounts from male partners of women with endometriosis

Currently dominant in medical discourse, the concept of self‐management sees the responsibility for health and illness shift from the state to the individual. However, while this emphasis on individual responsibility and management has burgeoned, the role and status of partners and other family members in the management of chronic illness remains under‐theorised. While self‐management privileges individual responsibility for the management of chronic illness, the role of partners remains unclear. This paper utilises data from a study of heterosexual couples’ experiences of living with the chronic gynaecological condition endometriosis to explore how male partners engage in its day‐to‐day management. In all, 22 couples participated in in‐depth, semi‐structured interviews with each partner interviewed separately (n = 44). Data were analysed thematically and dyadically, informed by an interpretivist relational approach. The paper utilises the concept of healthwork to describe the illness work, everyday life work, biographical work and emotion work men engaged in. The paper demonstrates how the conceptual value of healthwork is enhanced by incorporating an analysis of the emotional effort required in managing chronic illness. The paper illustrates the value of investigating the role of partners in managing chronic illness to provide a fuller account of the distributed and relational nature of healthwork

Important, misunderstood, and challenging: a qualitative study of nurses' and allied health professionals' perceptions of implementing self-management for patients with COPD.

Hannah ML Young,1 Lindsay D Apps,1 Samantha L Harrison,1 Vicki L Johnson-Warrington,1 Nicky Hudson,2 Sally J Singh1,3 1National Institute of Health Research CLAHRC-LNR Pulmonary Rehabilitation Research Group, University Hospitals of Leicester NHS Trust, 2School of Applied Social Sciences, De Montfort University, Leicester, 3Applied Research Centre in Health and Lifestyle Interventions, Coventry University, Coventry, UK Background: In light of the growing burden of COPD, there is increasing focus on the role of self-management for this population. Currently, self-management varies widely. Little is known either about nurses’ and allied health professionals’ (AHPs’) understanding and provision of self-management in clinical practice. This study explores nurses’ and AHPs’ understanding and implementation of supported COPD self-management within routine clinical practice. Materials and methods: Nurses and AHPs participated in face-to-face semistructured interviews to explore their understanding and provision of COPD self-management, as well as their perceptions of the challenges to providing such care. Purposive sampling was used to select participants from a range of professions working within primary, community, and secondary care settings. Three researchers independently analyzed each transcript using a thematic approach. Results: A total of 14 participants were interviewed. Nurses and AHPs viewed self-management as an important aspect of COPD care, but often misunderstood what it involved, leading to variation in practice. A number of challenges to supporting self-management were identified, which related to lack of time, lack of insight regarding training needs, and assumptions regarding patients’ perceived self-management abilities. Conclusion: Nurses and AHPs delivering self-management require clear guidance, training in the use of effective self-management skills, and education that challenges their preconceptions regarding patients. The design of health care services also needs to consider the practical barriers to COPD self-management support for the implementation of such interventions to be successful. Keywords: self-management, COPD, qualitative, interviews, nurses, allied health professional

The Telehealth Skills, Training, and Implementation Project: An evaluation protocol

External stabilization is reported to improve reliability of hand held dynamometry, yet this has not been tested in burns. We aimed to assess the reliability of dynamometry using an external system of stabilization in people with moderate burn injury and explore construct validity of strength assessment using dynamometry. Participants were assessed on muscle and grip strength three times on each side. Assessment occurred three times per week for up to four weeks. Within session reliability was assessed using intraclass correlations calculated for within session data grouped prior to surgery, immediately after surgery and in the sub-acute phase of injury. Minimum detectable differences were also calculated. In the same timeframe categories, construct validity was explored using regression analysis incorporating burn severity and demographic characteristics. Thirty-eight participants with total burn surface area 5 – 40% were recruited. Reliability was determined to be clinically applicable for the assessment method (intraclass correlation coefficient \u3e0.75) at all phases after injury. Muscle strength was associated with sex and burn location during injury and wound healing. Burn size in the immediate period after surgery and age in the sub-acute phase of injury were also associated with muscle strength assessment results. Hand held dynamometry is a reliable assessment tool for evaluating within session muscle strength in the acute and sub-acute phase of injury in burns up to 40% total burn surface area. External stabilization may assist to eliminate reliability issues related to patient and assessor strength