Experiential Expertise Research Articles

Empowerment: a key to promote the health of people with disabilities

Abstract In France, health public policies for people with disabilities are based on specific laws, recommendations and systems of reference. This population is under the responsibility of the medico-social sector, which governs specialized institutions and services. These services favor a medical approach to health focused on access to care. Their main missions are to take care of disabled people with kindness on a daily basis and to adapt the care to each person’s special needs, whatever the disability. They create links with families, organize the services offered and the living environments, administer their staff and collaborate with health professionals. As they ensure safety and health at all levels, from every individual project to collective life, they have a real opportunity to act on a set of health determinants. The Ottawa Charter for Health Promotion refers to the empowerment and participation of the population as fundamental principles; this is also true as far as people with disabilities are concerned. With the principal stakeholders on a national level, we wrote a handbook in order to support the implementation of these principles in medico-social institutions and services: ’Promoting health and well-being in the medico-social field in cooperation with people with disabilities” and their families. In this presentation, based on concrete examples, we will outline how the five intervention strategies of the Ottawa Charter can apply to people with disabilities, their families and their communities, especially inside specialized institutions and services. We will pay particular attention to the intervention methods and pedagogical tools which can be used to initiate or to improve the participation of disabled people in decisions, through the valuing of their experiential expertise, the development of their social skills, the strengthening of their health literacy, family-professional co-education, and cooperative strategies. Key messages Specialized institutions and services can promote the health of the people with disabilities they care for, by acting on the determinants of their health and by mobilizing participatory strategies. To strengthen disabled people’s participation, using their experiential expertise, developing their social skills and health literacy, and mobilizing co-education, are the best strategies.

The experiential expertise of primary care midwives in the detection of gender violence during pregnancy. Qualitative study

AimTo use the reflections of primary care midwives to know the barriers and facilitators for detecting IPV during pregnancy. The second aim is to know proposals for measures to improve the detecting. MethodQualitative methodology with a interpretative phenomenological approach. In-depth interviews were conducted with twelve midwives, who work in the sexual and reproductive health care centers in Hospitalet de Llobregat (Barcelona). ResultsThe difficulties in detection are the system of visits, the situation of women and barriers of the professional such as fear. The follow-up in the control of pregnancy and the relationship of trust with the midwife stand out as facilitators. The proposals for improvement were to increase training and use safe and reliable health care procedures. ConclusionsThe complexity of IPV makes it likely that IPV during pregnancy is undetected. It would be desirable to implement actions such as expanding training and agreeing on an internal work circuit that includes objective instruments to detecting IPV, coordination with other services and the ethical and legally appropriate way of recording in the clinical record.

Development and Content Validation of End of Treatment Questionnaires for Children With Cancer.

Purpose: To describe the development and content validation of measures to assess the psychoeducational needs of children, adolescents/young adults (AYAs), and their parents at the end of successful treatment for cancer. Method: Professional experts, which included pediatric oncology nurses and advanced practice registered nurses, conducted a systematic review of the literature to determine specific end of treatment (EOT) needs of children and AYAs with cancer and their parents and evaluate available tools to measure these needs. From this review, two EOT questionnaires were initially developed. Oncology Family Advisory Board (FAB) members served as experiential experts in refining and validating these questionnaires. FAB members participated in a content validation process, rating questionnaires online, and subsequently participating in a focus group to establish content validity (n = 6). Results: Three EOT questionnaires were ultimately developed. The Child/AYA questionnaire was divided into two separate measures for developmental and literacy considerations. The Parent/Caregiver and the AYA questionnaires each contain 38 items with a content validity index score of 100%. The Child questionnaire contains 37 items with a content validity index score of 100%. Conclusion: Content validity was established for three EOT questionnaires, each of which has the potential to elicit information regarding needs and potential gaps in services perceived by childhood cancer survivors and their parents. Further psychometric testing is needed to determine stability (test-retest reliability) and construct validity of the questionnaires.

Confessions of a Conscript, Disclosures of an Historian: An Autohistoriographical Essay

ABSTRACTAt the age of 18, I was drafted in to the South African Defence Force. I was a reluctant conscript who became increasingly uneasy in the knowledge that I was being trained to defend the apartheid system. I was deployed on the Namibian-Angolan border in the very early phase of what came to be known as the ‘Border War’. About 30 years later, I began to write about the war in my capacity as a professional historian. While I sought to produce scholarly work on the subject, I realised that my personal experience of having served in the army informed my approach to writing about the ‘Border War’. Indeed, I was persuaded by Simon Schama’s view that ‘all history tends towards autobiographical confession’. Like a confession, my ‘Border War’ project seeks to recuperate my sense of self-worth. To this end, this autohistoriographical essay about the ‘Border War’ explores the interstices of experiential knowledge and academic expertise. It seeks to come to terms with my embodiment as a veteran, with the modalities of memory that define my experience of military service and attempt to ascertain how these might have influenced my approach to the history of the ‘Border War’.

Reflecties op participatief actieonderzoek binnen RAAK!Ervaringsdeskundigheid

Participatory Action Research on and with experiential expertise Some of the principles of participatory action research raise questions and concerns when conducting PAR. In this article we reflect on three of these principles: cyclical change and learning, co-ownership of the research and generalizability of results. Our own PAR research on the introduction of experiential expertise in mental health practice forms the case for the reflections. We conclude that PAR asks for flexibility, good observation skills for things that arise and courage to use ways other than the usual ways to analyze or present results.

The experiential expertise of primary care midwives in the detection of gender violence during pregnancy. Qualitative study.

To use the reflections of primary care midwives to find out the barriers and facilitators for detecting IPV during pregnancy. The second aim is to determine proposals for measures to improve detection of IPV. Qualitative methodology with a interpretative phenomenological approach. In-depth interviews were conducted with 12midwives, working in the sexual and reproductive health care centres of Hospitalet de Llobregat (Barcelona). The difficulties in detection relate to the system of visits, the situation of women and barriers of practitioners themselves, such as fear. Follow-up of pregnancy and the relationship of trust with the midwife stand out as facilitators. The proposals for improvement were to increase training and use safe and reliable health care procedures. The complexity of IPV makes it likely that IPV during pregnancy is undetected. It would be desirable to implement actions such as expanding training and agreeing on an internal work circuit that includes objective instruments to detect IPV, coordination with other services and ethical and legally appropriate way of recording in the clinical record.

Saúde da população LGBT+ no contexto da atenção primária em saúde: relato de oficina realizada no internato integrado de Medicina de Família e Comunidade/Saúde Mental em uma universidade pública

Introdução: A saúde da população LGBT+ apresenta particularidades e vulnerabilidades que requerem atenção diferenciada. Sensibilizar e qualificar profissionais de saúde para as necessidades dessa população é fundamental para garanti-la o direito à saúde. Os currículos das graduações em saúde, que em geral não incorporam tais questões, têm sido interrogados pelo alunado com denúncias de LGBTfobia no curso médico e reivindicação de capacitação prática. Nesse contexto, o Internato Integrado de Medicina de Família e Comunidade e Saúde Mental da Faculdade de Medicina da Universidade Federal do Rio de Janeiro organizou oficina sobre Saúde da População LGBT, apresentada neste artigo. Métodos: Realizada em maio de 2018, teve como público alvo internos em estágio curricular na Atenção Primária em Saúde (APS), no município do Rio de Janeiro. Sensibilizar para o tema e apresentar ferramentas úteis para o cuidado na APS, e em outros cenários, foram os objetivos. Graduandos de medicina autodeclarados LGBT+ foram convidados a assumir a condução da atividade, preparada sob orientação de professoras do internato. O protagonismo dado a esses alunos permitiu articular à expertise científica, promovida nos estudos regulares sobre o tema, a expertise experiencial. A oficina ocorreu em 4 tempos: i) sensibilização; ii) discussão de casos; iii) informação e exposição de orientações para boas práticas em saúde; iv) dúvidas e avaliação. A duração total foi de 4 horas, com metodologias ativas e participativas. Resultados: Os objetivos foram alcançados e a atividade bem avaliada em sua organização e execução. Avaliação narrativa foi realizada com alunos e professores organizadores. Os internos participantes responderam questionário online com perguntas abertas e fechadas e também avaliaram positivamente a atividade nos quesitos metodologia e conteúdo. Conclusão/Desdobramentos: A oficina foi incluída nas atividades regulares do internato. Estão em construção, com vistas a difundir esses conhecimentos a outros estudantes do curso médico e a profissionais da rede de saúde municipal, disciplina eletiva e projeto de extensão. A inclusão longitudinal do tema no currículo permanece como desafio.

Principles and strategies for involving patients in research in chronic kidney disease: report from national workshops.

There is widespread recognition that research will be more impactful if it arises from partnerships between patients and researchers, but evidence on best practice for achieving this remains limited. We convened workshops in three Australian cities involving 105 patients/caregivers and 43 clinicians/researchers. In facilitated breakout groups, participants discussed principles and strategies for effective patient involvement in chronic kidney disease research. Transcripts were analysed thematically. Five major themes emerged. 'Respecting consumer expertise and commitment' involved valuing unique and diverse experiential knowledge, clarifying expectations and responsibilities, equipping for meaningful involvement and keeping patients 'in the loop'. 'Attuning to individual context' required a preference-based multipronged approach to engagement, reducing the burden of involvement and being sensitive to the patient journey. 'Harnessing existing relationships and infrastructure' meant partnering with trusted clinicians, increasing research exposure in clinical settings, mentoring patient to patient and extending reach through established networks. 'Developing a coordinated approach' enabled power in the collective and united voice, a systematic approach for equitable inclusion and streamlining access to opportunities and trustworthy information. 'Fostering a patient-centred culture' encompassed building a community, facilitating knowledge exchange and translation, empowering health ownership, providing an opportunity to give back and cultivating trust through transparency. Partnering with patients in research requires respect and recognition of their unique, diverse and complementary experiential expertise. Establishing a supportive, respectful research culture, responding to their individual context, coordinating existing infrastructure and centralizing the flow of information may facilitate patient involvement as active partners in research.

A qualitative exploration of physiotherapists’ perceptions about exercise and physical activity: reflections on the results from a Delphi Study

Purpose: This study explored physiotherapists’ interpretation of exercise and physical activity, examined physiotherapists’ views and opinions about the prioritised physical activity practices of people with multiple sclerosis and its implication for clinical practice.Method: Fourteen physiotherapists (12 females, 2 males) with experience of working with people with multiple sclerosis in the community participated in three focus groups. Physiotherapists commented on the results of a previous Delphi study which highlighted the prioritised exercise and physical activity practices and reasons people with multiple sclerosis engage in exercise and physical activity. The focus groups were audio recorded and transcribed verbatim. Data were analysed using framework analysis.Results: Four themes were developed from the analysis namely, Blurred terminologies, Influencing factors for the meaning of exercise and physical activity, When professional expertise meets experiential expertise and The resolve: resolving professional and experiential tensions.Conclusion: Physiotherapists described exercise and physical activity as movement with a focus on the physiological attributes. Nonetheless they valued and use exercise and physical activity as strategies to manage the symptoms associated with multiple sclerosis. Physiotherapists are strategically placed in the community to initiate discussions, assess, and create opportunities to enhance the physical activity practices of people with multiple sclerosis. However, there is greater scope for the application of physical activity to be embedded in routine clinical practice in the management of multiple sclerosis in the community.Implications for rehabilitationPhysiotherapists should design flexible physical activity programmes which are meaningful, engaging and foster the necessary environment to sustain physical activity participation in people with multiple sclerosis.Health professionals should be aware of and understand the individuals’ priorities as these are key drivers to engaging and sustaining physical activity in community dwelling people with multiple sclerosis.Physiotherapists should be aware of their own beliefs and theoretical principles that guide designs and treatment programmes as these might either enhance or restrict physical activity in people with multiple sclerosis.

Expert perceptions of the ‘freak’ wave myth on Australia's rocky coasts

Hazardous rocky coasts are a leading site for coastal drowning deaths worldwide. Between 2004 and 2017, 149 rock fishers have drowned on Australia's rocky coasts, making rock fishing one of Australia's deadliest sports. Most portrayals of drowning frame the event with high-energy waves inundating shore platforms, washing fishers off balance and into the ocean. The physical risk of overtopping waves is known, yet few studies have explored how fishers perceive overtopping wave hazards, or how experience influences those perceptions. Using semi-structured interviews (n = 52) with rock fishers of varying experience, this study explores the visual cues that activate a fisher's response to an anticipated hazard. We consider experienced fishers uncertified risk ‘experts’, whose recurring first-hand experience informs their expertise. The goal of this study is to explore how closely ‘expert’ perceptions align with drowning incidents and to contrast their perceptions with the risk of 'freak waves’, a prevailing framing used by the media and government in response to drownings. We explore experienced fishers' testimonies, demonstrating their attribution of drownings to inexperienced fishers' inability to perceive the absence of risk during longer wave periods. During longer wave periods, the wave length and time between overtopping waves increases, giving the sea a more ‘safe’ appearance. To compare expert testimonies with drowning data, a wave hindcasting model was used to identify what, if any, mean coastal conditions fluctuated when fishers drowned. This was done by comparing the daily mean significant wave height, direction, and period (2005–2018) in two drowning black spot locations with the mean daily values when fishers drowned. Results show that the wave period at both sites was longer than average at the time of drownings, supporting expert perceptions of longer wave periods being associated with fishers drowning. We argue experiential expert's knowledge could be incorporated into existing risk management to accommodate the ways that experienced and inexperienced fishers anticipate and perceive risk during longer wave periods.

Developing expertise, customising sleep, enhancing study practices: exploring the legitimisation of modafinil use within the accounts of UK undergraduate students

Introduction and aim: Increasing numbers of students are reportedly using prescription medications to enhance cognition. This study aimed to generate qualitative data on UK students’ understandings and perspectives of the risks and benefits surrounding so-called ‘study drugs’ (particularly, modafinil).Design and methods: Fifteen undergraduate students studying biomedical science subjects were interviewed about their perspectives on study drugs. Interviews were recorded and transcribed for thematic analysis. Users and non-users were included in the sample.Results: The prescription status and comparisons to other legal and illicit stimulants informed accounts of the (lack of) risks associated with study drugs, legitimising use. The customisation of sleep(iness) and wakefulness was described as a key benefit of study drug use. Drivers of use related to university pressures and desires to increase productivity. In periods of heightened stress, such as examinations, students reported altered practices and perspectives on risk.Discussion and conclusions: We noted the contextual nature of students’ use and risk appraisals, with fluctuating social contexts and pressures over time being capable of altering prior assessments and current practices (including the legitimisation of study drug consumption). Further, we highlighted the degree to which students leveraged their biomedical and experiential expertise to account for drug consumption.

Knowing autism: The place of experiential expertise

Abstract Jaswal & Akhtar challenge the notion that autistic people have diminished social motivation, prompted in part by a desire to take autistic testimony seriously. We applaud their analysis and go further to suggest that future research could be enhanced by involving autistic people directly in the research process.

Citizen participation in efforts to improve the quality and safety of care

Given the changing needs of the user, the model of public service administration that was once constructed in ignorance of the user and his concerns no longer finds its place. There is therefore mention of a reversal of trends and a modernization of public institutions and structures based on a reflective approach that over-emphasizes the user's place in the system as beneficiary, recipient and partner of the care service. The participation and the viewpoint of the user constitute therefore a very important stake in the improvement of the quality of the care and the evaluation of the health technologies. Convinced of the importance of involving users in efforts to improve the quality and safety of healthcare, the High Authority for Health (HAS), as a public institution for health democracy in France, has put in place cooperation projects between health professionals and beneficiaries translated into working groups and committees. Through this approach, the HAS gives the beneficiaries the role of experts enabling them, through their experiential expertise to express themselves in the process of modernization and improvement of certification and quality and safety of care. It is with the aim of understanding the various modalities and the level of involvement of users' representatives in the quality procedures in general and in the certification of healthcare institutions in particular that we will try in this contribution to highlight the obstacles and the means in the health sector in France.

Patients’ experiential knowledge and expertise in health care: A hybrid concept analysis

Although the concept of experiential expertise is relatively new in modern health care services, policy, and research, it has profound implications for improving participation in healthcare. The absence of theoretical and conceptual clarity has led to poor understanding and miscommunication among researchers, health practitioners, and policy makers. The aim of this article is to present a concept analysis of experiential expertise and to explain its defining characteristics, applicability, and significance. A combination of Rodger’s evolutionary method combined with Schwartz-Barcott and Kim’s hybrid model was selected as a method for the analysis of the experiential expertise concept. This method combines theoretical (24 definitions) with empirical data analysis (17 interviews). Antecedents, attributes, and consequences are determined. A comprehensive definition is provided, and the interrelatedness between experiential expertise and related concepts was mapped. Experiential expertise is a complex process exceeding the boundaries of individual experiences. Its availability cannot be taken for granted. Using experiential expertise in health care can facilitate patient empowerment leading to improved quality of life and health care. The present study offers clarity by proposing a conceptual model that can assist researchers, policy makers, and health care professionals in facilitating implementations in practice.

Trust-Building in a Patient Forum: The Interplay of Professional and Personal Expertise

Online discussion forums for patients offer the benefits of community but the risks of misinformation. A physician-moderated forum may help to mitigate this tension. How do both the professional expertise of a physician moderator and the personal, experiential expertise of patients contribute to trust in a forum? A rhetorical analysis of a year of postings in an online Parkinson’s community reveals that both forms of expertise were trusted, demonstrating the possibility for them to complement each other. This study illustrates the broader ways trust is established in patient communities and offers implications for technical communicators as forum designers or moderators.

New Horizons for Stroke Medicine: Understanding the Value of Social Media.

Social media (SM) has provided individuals and organizations with an openly accessible platform encouraging participation and engagement in different forms of media (blogs, photos, infographics, and videos). In the past decade, there has been an exponential increase in platforms supporting user-driven content all encouraging differing degrees of SM interaction. Despite the initial SM revolution being based on social interaction, increasingly medical professionals are harboring such streams of communication to further medical knowledge and develop professional networks. An example of a SM platform is Twitter, a well-established microblogging tool,1 which supports communities2 of medical professionals interacting regularly. Importantly, data support an increasing coverage of biomedical literature on Twitter (≈10% of all published literature).3 Stroke medicine is constantly evolving to adapt to new technologies, which have supported new therapies and new diagnostic tools. However, little is known about the benefit of new technologies to our ways of communicating. In this article, we discuss how stroke trainees in particular could benefit from using SM to communicate and improve their educational, professional, and academic development. Furthermore, we provide for the first time Twitter analytic data from an international stroke trainee-based meeting to demonstrate real-world value to trainees and importantly organizations. In the past decade, several medical and surgical specialties have developed international SM platforms to disseminate a variety of professional and patient relevant outputs. These include online journal clubs, anonymized cases, and patient-friendly information. Interestingly, patients seem to value online health communities in which both physicians and patients participate. The benefits are colocated information from both medical experts and experiential experts. In an online 95 stroke patient community, patients’ reasons for use of such a platform included medical activities (gathering information about disease or being informed about scientific research …

“We Are the Visible Proof”: Legitimizing Abortion Regret Misinformation through Activists’ Experiential Knowledge

Since 2010, many abortion policies emerging at the state level have been designed around the idea of “abortion regret,” a scientifically discredited assertion that abortion causes long‐term health problems for women. Studies have examined the legal significance of regret claims in case law as well as the role scientific misinformation and uncertainty play in the policy process. However, scholars have given less attention to the intersection between abortion regret experiences and misinformation. We address this gap in the literature by examining how antiabortion activists' experiential knowledge continues to reinforce and legitimize misinformation contained in state policies. We explore the process of substantiating abortion regret misinformation by attaching it to activists' experiential expertise. Based on twenty‐three interviews with antiabortion activists, we argue that misinformation receives validation through the certainty of experiential knowledge, which activists mobilize around and use as a source of evidence in the policy process.

Thin Political Markets in Accounting and Beyond: Lessons for Leadership Education

Abstract Thin political markets are regulatory processes characterised by two features: first, a concentrated commercial interest that is also the source of necessary experiential expertise; second, low participation from the general interest driven by low issue salience. Thin political markets generate capture in two ways distinct from the classic collective-action scenario: first, that the nature of necessary expertise is tacit or implicit – knowledge that comes from doing; second, that the issues at stake evince little interest from the general public or its intermediaries such as the media or politicians. The challenge in thin political markets is that business leaders, who are the subject-matter experts, are both the source of capture and the only realistic prospect for solution. I discuss ways in which we can address this challenge.

Audit committee chair and financial reporting timeliness: A focus on financial, experiential and monitoring expertise

In this study, we examine the association of audit committee chair financial, experiential and monitoring expertise with the audit report lag period. We find that the experiential and monitoring expertise of audit committee chairs have a significant negative association with the delay in the audit report lag period, possibly resulting in more effective audit committee chairs, at least in the face of financial reporting timeliness. We also find that the audit committee composite compliance variable has a significant negative association with the audit report lag period, which suggests that a firm's compliance with audit committee regulations is also beneficial for financial reporting timeliness. These are important findings from the practice, academic and public policy perspectives.

Localizing Detroit’s Food System: Boundary-Work and the Politics of Experiential Expertise

ABSTRACTRecently, different expert actors have attempted to localize Detroit’s food system to bring about greater justice citywide. At first, ‘professional experts’ dominated these efforts, claiming authority in the food system due to their knowledge based in qualified training and applied work experience. Yet a rival group of ‘experiential experts’ soon rose up to assert their power, arguing they and their unique race and place-based know-how merited greater influence. Within just a few years, experiential experts successfully replaced professional ones in commanding much area food localization. I show that experiential experts achieved this power largely through strategic boundary-work, including expulsion, expansion, and protection of autonomy. Nonetheless, some Detroiters and professional experts themselves questioned experiential experts’ legitimacy in removing professional experts from the food system altogether. I thus introduce a fourth form of boundary-work that experiential experts deployed to maintain their clout, what I term ‘accommodation’. Accommodation connotes instances of strategic inclusion where an expert authority facilitates rivals in sharing some influence based on distinct conditions that leave dominant epistemic arrangements generally intact. This occurred in Detroit as experiential experts accommodated professional ones in exercising some food systems power provided they better deploy their own race and place-based knowledge. Such actions helped quell public concern while also protecting experiential experts’ rising authority. Accommodation is useful for understanding cases in which diverse types of experts work together despite that single knowledge-forms guide their activities overall. Further research into accommodation could aid in identifying whether or not diverse forms of knowledge are together influencing decision-making around a range of cases, or if single forms of expertise remain dominant despite the appearance that democratization is taking place.