Experiential Expertise Research Articles

Around the table with policymakers: Giving voice to children in contexts of poverty and deprivation

Increasingly, children are seen as social actors who are knowledgeable about issues that concern their lives, both in research and policymaking. However, this approach is not without challenges, particularly in relation to sensitive topics like poverty. One key challenge relates to how to involve children effectively so that their stories are actually listened to and acted upon by policymakers. This article reflects on the potential of photovoice as a method to make explicit children’s narratives about their lives and to inform policymakers of children’s perspectives. We involved two groups of children living in contexts of poverty and deprivation in urban areas of the Netherlands, supporting them to refine their narrative and presentation through photography. The children were brought into contact with policymakers after they had gained experience as photographers and experiential experts. The policymakers found their narratives compelling, and there is evidence that the children’s perspectives were taken on board in local government. Exhibition of the photographs using a specially designed table was also found to be an effective addition to the photovoice method. We conclude that photovoice can be successfully used to facilitate dialogue between children and policymakers, but that its use requires time, creativity and reflexivity.

Carers' views of topical corticosteroid use in childhood eczema: a qualitative study of online discussion forums.

Childhood eczema is very common and can have substantial impact on quality of life. One of the main treatments is topical corticosteroids, but these are often underused by parents and carers for reasons that include concerns about safety. To explore understandings and concerns about topical corticosteroids among parents and carers of children with eczema who had posted messages in online forums. A qualitative study of messages and their resultant discussions about topical corticosteroids for childhood eczema posted by parents and carers on two U.K.-based discussion forums. Ninety-five forum users involved in 27 discussions relating to topical corticosteroid use in childhood eczema were identified dating from 2003 to 2015. Analysis of discussions highlighted three themes: (i) diverse beliefs about the use of topical corticosteroids; (ii) uncertainty and confusion about using and applying topical corticosteroids; and (iii) seeking to resolve conflicting advice received offline and advice on navigating health services. People expressed a general sense of cautiousness about topical corticosteroids, wide-ranging concerns and considerable confusion, for instance about potency or safe duration of use. They sought advice from other forum users who they perceived as having experiential expertise. Some posts attempted to reassure that topical corticosteroids were safe if used correctly, but overall the discussions seemed likely to amplify existing concerns. Given the prevalence of concerns and uncertainties about topical corticosteroids, signposting parents and carers of children with eczema towards detailed, credible information about how to use topical corticosteroids safely would be beneficial. In the absence of such information, parents and carers are likely to turn to online discussion forums where, although much useful support and advice can be found, the credibility of advice cannot be assured.

Constructing knowledge and ignorance in the social information worlds of young mothers

ABSTRACTThe socially constructed information worlds within which individuals live, work and play necessarily shape their information practices. One way in which this occurs is through the social construction of knowledge, expertise and ignorance, including which actors are considered to possess authoritative knowledge through administrative authority or lay expertise. Using Adele Clarke's situational mapping techniques, this paper examines the discursive construction of knowledge and ignorance in the information worlds of young mothers in the Greater Vancouver region of Canada. Data was collected via observations at school‐based Young Parent Programs and interviews with 37 young mothers over a 15‐month time period. Gendered and racialized young parent social worlds discursively constructed the “teen mom” as knowledgeable in matters of sexuality and technology and ignorant in matters of parenting and health. Further, certain forms of experiential expertise common to marginalized groups were sometimes constructed in such information worlds as forms of ignorance. Recognizing the diversity of knowledge and expertise among young mothers rather than perceiving them as unilaterally information poor may lead to improved information and support services for young parents.

Experiential knowledge as a resource for coping with uncertainty: evidence and examples from the Netherlands

In this article, we examine how experiential knowledge is used in areas such as mental health care and youth policy and how it relates to the dominant form of knowledge that underpins these policy areas, ‘expert knowledge’. Experiential knowledge is sometimes considered a resource that helps people in vulnerable situations respond to uncertain futures. Although frequently undervalued, experiential knowledge is involved in multifaceted responses to situations imbued with uncertainty. In this article, we examine the nature of experiential knowledge as a resource and develop a typology of experiential knowledge drawing on existing studies. Experiential knowledge is not merely ‘lay beliefs and fallacies’ that holders of expert knowledge should be aware of so that they can better implement top-down strategies; it reflects lived experiences that are difficult for outsiders to capture. In the Netherlands, the rise of lived experience as a resource for intervention was born through the critique of the hegemonic power of ‘expert knowledge’ and as policymakers recognised the potential contribution of ‘experiential experts’ in shaping responses to situations characterised by high uncertainty. In such situations policymakers can draw on insights into the experience of usually silent stakeholders: people deemed at risk. In this article, we also highlight tensions related to these particular multifaceted responses, suggesting that experiential knowledge is viewed with ambivalence by some other stakeholders.

Nurses' Experiences in Safe Handling of Chemotherapeutic Agents: The Taiwan Case.

Nurses are the least compliant with the guidelines for use of personal protective equipment (PPE) among health professionals. While the literature regarding nurses not following the guidelines focuses on nonuse of PPE, the experiences of using PPE from nurses' perspectives have not been examined. The aim of this study was to explore the concerns of nurses regarding their decision to use or not to use PPE in the cultural context of Taiwan. An ethnographic design was used, and ethnographic interviews of 57 nurses working with chemotherapy for more than 2 years were conducted. The participating nurses were observed in 2 accredited medical centers with oncology care teams in Taiwan. The constant comparison method was applied for data analysis, and cultural themes were generated from all transcripts. Wearing PPE was identified as an obstacle to professional image and performance. Nurses transformed safety into efficiency and prioritized social roles over professional roles. Experienced nurses, as insiders, believed that they have gained clinical wisdom to avoid occupational exposure to chemotherapy toxicity. This study explored the characteristics of clinical wisdom regarding PPE use in the context of Taiwanese chemotherapy care. Perceived professional image, efficiency on the job, PPE cost, and hospital rules influenced the use or nonuse of PPE by oncology care nurses. Acceptable nurse-patient ratios and refraining from chemotherapy toxicity exposure for pregnant and breast-feeding women are advocated for policy making. The experiential expertise of nurses should be shared as credible evidence in developing guidelines.

Individual, Group and Organised Experiential Expertise in Recovery from Intimate Partner Violence and Mental Health Problems in Finland

Individual, Group and Organised Experiential Expertise in Recovery from Intimate Partner Violence and Mental Health Problems in Finland

A user-developed, user run recovery programme for people with severe mental illness: A randomised control trial

We examined, over a two-year period, the impact of a user-developed and user-run recovery programme (Toward Recovery, Empowerment and Experiential Expertise – TREE) on outcomes in individuals with severe mental illness, as add-on to care as usual. A randomised wait-list controlled design of TREE added to care as usual (CAU) (n = 80), versus CAU only (n = 83), was implemented in patients with severe mental illness. Follow-up was at 12 and at 24 months after inclusion. Primary outcome measures were empowerment, mental health confidence and loneliness. Secondary outcomes were quality of life, self-reported symptoms, care needs, service use and community outcomes (likelihood institutional residence and paid employment).TREE was associated with more mental health confidence (effect size for each year in TREE: 0.058, p = 0.043), less care needs (effect size for each year in TREE: –0.088, p = 0.002), less self-reported symptoms (effect size for each year in TREE: –0.054, p = 0.040) and less likelihood of institutional residence (risk ratio with each year in TREE: 0.79, p = 0.027).User-developed and user-run recovery programmes may bring about small but reliable changes in recovery and community outcome after two years. More research is required to examine how such programmes can become more successful within the context of disability-focused mental health services.

Addressing the Person of the Therapist in Supervision: The Therapist's Inner Conversation Method.

In this study a method of retrospective case supervision is presented aimed at helping the supervisee to become a better self-supervisor. The method pays special attention to the therapist's self-reflection and has the therapist's inner conversation as a central concept. The starting point of the method is an assignment in which the supervisee reflects on a case using a tape-assisted recall procedure. The method helps trainees to develop experiential expertise to become more flexible and effective therapists. A case example of one training group of novice family therapists illustrates the use of the method.

Exploration of Methods Used by Pharmacy Professional Programs to Contract with Experiential Practice Sites

Objective. To explore methods used by pharmacy programs to attract and sustain relationships with preceptors and experiential practice sites. Methods. Interviews with eight focus groups of pharmacy experiential education experts (n=35) were conducted at two national pharmacy meetings. A semi-structured interview guide was used. Focus group interviews were recorded, transcribed verbatim, and categorically coded independently by two researchers. Codes were compared, consensus was reached through discussion, and two experiential education experts assisted with interpretation of the coded data. Results. Six themes emerged consistently across focus groups: a perceived increase in preceptor compensation, intended vs actual use of payments by sites, concern over renegotiation of established compensation, costs and benefits of experiential students, territorialism, and motives. Conclusion. Fostering a culture of collaboration may counteract potentially competitive strategies to gain sites. Participants shared a common interest in providing high-quality experiential learning where sites and preceptors participated for altruistic reasons, rather than compensation.

Collecting and validating experiential expertise is doable but poses methodological challenges

ObjectivesTo give an overview of important methodological challenges in collecting, validating, and further processing experiential expertise and how to address these challenges. Study Design and SettingBased on our own experiences in studying the concept, operationalization, and contents of experiential expertise, we have formulated methodological issues regarding the inventory and application of experiential expertise. ResultsThe methodological challenges can be categorized in six developmental research stages, comprising the conceptualization of experiential expertise, methods to harvest experiential expertise, the validation of experiential expertise, evaluation of the effectiveness, how to translate experiential expertise into acceptable guidelines, and how to implement these. The description of methodological challenges and ways to handle those are illustrated using diabetes mellitus as an example. ConclusionExperiential expertise can be defined and operationalized in terms of successful illness-related behaviors and translated into recommendations regarding life domains. Pathways have been identified to bridge the gaps between the world of patients' daily lives and the medical world.

Unpacking Frame Resonance: Professional and Experiential Expertise in Intellectual Property Rights Contention*

In 2004, Canadian officials introduced amendments to the country's Plant Breeders' Rights Act. An intellectual property movement supported the changes and a farmers' rights movement opposed them. Though conditions seemed to favor the former, the latter was more successful. To explain this, I compare each movement's deployment of professional and experiential expertise in their framing attempts. I argue that professional expertise, acquired through formalized training, and experiential expertise, gained through lived experience, provide unique and important support in claims making; highly resonant frames are often those built and maintained with both. Indeed, the farmers' rights movement's use of professional and experiential expertise together in framing the amendments helps account for its efficacy against the intellectual property movement (which failed to do so). This analysis contributes to our understanding of frame resonance and highlights underexplored South-to-North channels of influence due to the particular role of Southerners' experiential expertise in this comparison.

Going Public, Gaining Credibility

Calls for university and college professors to engage with public issues—for example, by collaborating with community organizations, participating in popular media outreach, and in other ways—are on the rise. However, engaged scholarship blurs conventional boundaries between producers of academic knowledge and the public. To what extent does participation in engaged scholarship affect professors’ credibility as sources of knowledge? We investigate this question using data from an experimental survey of university students ( n = 633). We find that although engaged scholars are perceived to be more liberal, students believe they are more knowledgeable and should be more influential in public policy decisions compared with nonengaged scholars. Open-ended responses indicate that scholarly engagement with the public is seen as an indicator of faculty members’ experiential expertise and personal commitment to public issues. Consequently, scholarly engagement with social problems often strengthens professors’ credibility among students as information sources. We conclude by discussing the implications of these findings for the engaged scholarship movement and for the sociology of knowledge.

‘Oh, was that “experiential learning”?!’ Spaces, synergies and surprises with Kolb’s learning cycle

We share findings from empirical research into Kolb’s experiential learning approach, using our reflections as teachers and data from our undergraduate management students. The experiential learning experience emerges as a space where bodies, feelings and ideas move and develop in intimate relationship with one another. This is a space where teachers exercise authority over, and commitment to, the here-and-now, risking corporeal and intellectual exposure. We probe the concept of experience in experiential learning, suggesting that teachers require a kind of ‘experiential expertise’ to draw both on embodied felt sense and on what one has done in one’s own career to role-model the transformation of experience into knowledge, which is at the heart of Kolb’s theory. We explore a blurring of experiential agency, and the tendency for students to appropriate the teacher’s experience rather than dwell on or develop their own. For us, experiential learning is more usefully seen as ‘relationship-centred’ than ‘student-centred’, and we contrast this relational focus with the way experiential learning seems to have been popularised as anti-interventionist, a kind of educational ‘laissez-faire’. Based on these reflections, we suggest powerful connections between phenomenology and theories of space as a way of conceptualising the complexities and richness of teaching and learning experiences.

Exploring patient and public involvement in stroke research: a qualitative study

Purpose: To explore the experiences of patients and carers involved in patient and public involvement (PPI) activities for stroke research. Methods: Semi-structured interviews conducted with stroke survivors and carers (n = 11) were analysed using thematic analysis. Results: Four key themes emerged: impact of PPI on the individual and the research process, credibility and expertise, level of involvement and barriers and facilitators to PPI for stroke survivors and carers. The perceived benefits to the research process included: asking questions, keeping researchers grounded and directing the research agenda. All participants drew upon their experiential expertise in their PPI role, but some also drew upon their professional expertise to provide additional credibility. Stroke survivors and carers can be involved in PPI at different levels of involvement simultaneously and the majority of participants wanted to be more involved. Barriers to involvement included: location, transport and stroke survivors capacity to concentrate and comprehend complex information. Facilitators included: reimbursement for travel and time and professionals effort to facilitate involvement. Conclusions: PPI in stroke research benefits stroke survivors and carers and is perceived to benefit the research process. The barriers and facilitators should be considered by professionals intending to engage stroke survivors and carers collaboratively in research.Implications for RehabilitationThis study has implications for PPI in stroke rehabilitation research, which could also be extrapolated to stroke rehabilitation service development and evaluation.Professionals facilitating PPI need to invest in developing supportive relationships in order to maintain ongoing involvement.Professionals need to be aware of how the varied consequences of stroke might impede participation and strategies to facilitate involvement for all who wish to be involved.For each rehabilitation issue being considered professionals need to decide: (1) how representative of the specific rehabilitation population the PPI members need to be, (2) whether experience alone is sufficient or whether additional professional skills are required and (3) whether training is likely to assist involvement or potentially reduce the lay representation.

‘Nothing about us, without us’ – A user/survivor perspective of global mental health

Surprisingly little has been published directly from user/survivors in the burgeoning (and sometimes contentious) field of global mental health (GMH). This is important both ethically and practically if GMH is to benefit from the experiential expertise that user/survivors can bring, especially when they come from those lower or middle income countries (LMICs) where GMH programmes are targeted. Whether user/survivors from higher income countries (HICs) (whose experiential expertise has usually been developed in cultural/social/health/ economic/political contexts which are very different to those in LMICs) could also provide useful input to GMH is less clear. In this article I consider this directly from my perspective as a user/survivor in a HIC. I discuss how, in spite of contextual differences, there appear to be striking resonances between GMH in LMICs and mental health in HICs, particularly areas of concerns, e.g. diagnosis, treatment and cultural difference. I illustrate this using aspects of my own personal experience in a reflexive narrative way, and suggest that such narrative-illustrations could provide useful input in GMH. I also touch on other ways in which HIC user/survivors might become involved in GMH. I conclude by stressing that, however HIC user/survivors become involved in GMH, they must do so ethically, ensuring that those in LMICs always remain at the forefront.

Activity and views of service users involved in mental health research: UK survey.

Optimisation of the process and outcomes of service user involvement in research is dependent on understanding current practice, challenges and opportunities. To describe activities, roles and experiences of service users involved in mental health research. National cross-sectional online questionnaire survey, using snowball sampling. Descriptive statistics and framework analysis undertaken collaboratively with a service user reference group. The survey revealed a previously undescribed, highly qualified service user research workforce. Positioned within and alongside mainstream research, respondents reported drawing on extensive service use, and passion for service improvement to challenge perceived clinical academic dominance of research. The support of peers was crucial to involvement, which typically enhanced mental health but for some, pervasive stigma and scrutiny undermined self-confidence and practical difficulties challenged equitable participation. Recognition of the service user research workforce will support the constructive amalgamation of academic and experiential expertise needed to shape and realise investment in mental health research.

Cyborg practices: call-handlers and computerised decision support systems in urgent and emergency care.

This article draws on data collected during a 2-year project examining the deployment of a computerised decision support system. This computerised decision support system was designed to be used by non-clinical staff for dealing with calls to emergency (999) and urgent care (out-of-hours) services. One of the promises of computerised decisions support technologies is that they can 'hold' vast amounts of sophisticated clinical knowledge and combine it with decision algorithms to enable standardised decision-making by non-clinical (clerical) staff. This article draws on our ethnographic study of this computerised decision support system in use, and we use our analysis to question the 'automated' vision of decision-making in healthcare call-handling. We show that embodied and experiential (human) expertise remains central and highly salient in this work, and we propose that the deployment of the computerised decision support system creates something new, that this conjunction of computer and human creates a cyborg practice.

Making sense of evidence in management decisions: the role of research-based knowledge on innovation adoption and implementation in health care

BackgroundAlthough innovation can improve patient care, implementing new ideas is often challenging. Previous research found that professional attitudes, shaped in part by health policies and organisational cultures, contribute to differing perceptions of innovation ‘evidence’. However, we still know little about how evidence is empirically accessed and used by organisational decision-makers when innovations are introduced.Aims and objectivesWe aimed to investigate the use of different sources and types of evidence in innovation decisions to answer the following questions: how do managers make sense of evidence? What role does evidence play in management decision-making when adopting and implementing innovations in health care? How do wider contextual conditions and intraorganisational capacity influence research use and application by health-care managers?MethodsOur research design comprised multiple case studies with mixed methods. We investigated technology adoption and implementation in nine acute-care organisations across England. We employed structured survey questionnaires, in-depth interviews and documentary analysis. The empirical setting was infection prevention and control. Phase 1 focused on the espoused use of evidence by 126 non-clinical and clinical hybrid managers. Phase 2 explored the use of evidence by managers in specific technology examples: (1) considered for adoption; (2) successfully adopted and implemented; and (3) rejected or discontinued.Findings(1) Access to, and use of, evidence types and sources varied greatly by profession. Clinicians reported a strong preference for science-based, peer-reviewed, published evidence. All groups called upon experiential knowledge and expert opinion. Nurses overall drew upon a wider range of evidence sources and types. Non-clinical managers tended to sequentially prioritise evidence on cost from national-level sources, and local implementation trials. (2) A sizeable proportion of professionals from all groups, including experienced staff, reported difficulty in making sense of evidence. Lack of awareness of existing implementation literature, lack of knowledge on how to translate information into current practice, and lack of time and relevant skills were reported as key reasons for this. (3) Infection outbreaks, financial pressures, performance targets and trusted relationships with suppliers seemed to emphasise a pragmatic and less rigorous approach in sourcing for evidence. Trust infrastructure redevelopment projects, and a strong emphasis on patient safety and collaboration, appeared to widen scope for evidence use. (4) Evidence was continuously interpreted and (re)constructed by professional identity, organisational role, team membership, audience and organisational goals. (5) Doctors and non-clinical managers sourced evidence plausible to self. Nursing staff also sought acceptance of evidence from other groups. (6) We found diverse ‘evidence templates’ in use: ‘biomedical-scientific’, ‘practice-based’, ‘rational-policy’. These represented shared cognitive models which defined what constituted acceptable and credible evidence in decisions. Nurses drew on all diverse ‘templates’ to make sense of evidence and problems; non-clinical managers drew mainly on the practice-based and rational-policy templates; and doctors drew primarily on the biomedical-scientific template.ConclusionsAn evidence-based management approach that inflexibly applies the principles of evidence-based medicine, our findings suggest, neglects how evidence is actioned in practice and how codified research knowledge inter-relates with other ‘evidence’ also valued by decision-makers. Local processes and professional and microsystem considerations played a significant role in adoption and implementation. This has substantial implications for the effectiveness of large-scale projects and systems-wide policy.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Expert and experiential knowledge in the same place: Patients’ experiences with online communities connecting patients and health professionals

ObjectiveTo explore patients’ experiences with online health communities in which both physicians and patients participate (i.e. patient-to-doctor or ‘P2D’ communities). MethodsA qualitative content analysis was conducted, based on observations in five P2D communities ranging from 8 to 21 months, and semi-structured interviews (N=17) with patients. ResultsPatients consider information from physicians and peers as two distinct sources, value both sources differently and appreciate accessing both in the same web space. According to respondents, physicians can provide ‘reliable’ and evidence-based information, while patients add experience-based information. Patients use this information for multiple purposes, including being informed about scientific research and personal reflection. ConclusionPatients find P2D communities beneficial because they help patients to collect information from both medical experts and experiential experts in one place. Practice implicationsPatients use P2D communities to perform medical, emotional and lifestyle activities. The presence of physicians in P2D communities may inadvertently suggest that the quality of information used for the activities, is controlled. When information is not officially being checked, this should be stated explicitly on the website and supplemented with a statement that information is only indicative and that patients should at all times contact their own physicians.

Mobilising the experiential knowledge of clinicians, patients and carers for applied health-care research

This article demonstrates the benefits of combining various types of knowledge for applied health research. Funding is available for health research despite these being ‘austere times’ for public services and international policy shifts recognise the role that patients, carers and the public can play in research. In England the National Institute for Health Research, Research Design Service (RDS) was created to ensure that the experiential knowledge of clinicians working in the National Health Service is informed by methodological expertise to achieve relevant research outcomes. The RDS also facilitates patient and public involvement in research, framed as ‘PPI’. This raises the question of how PPI impacts on research design and funding and which patients or members of the public should be involved in which aspects of research. To answer these questions we present case studies that draw on the expertise of academics, clinicians, patients and the public in applied health research. These cases demonstrate that where patients with direct experience of the condition that is to be studied are actively involved as advisers early on in applied health research, this can enhance the likelihood of successful funding applications, ethical aspects of research and the relevance of questionnaires and interventions to patients. For comparative purposes, we give an example of an unsuccessful research proposal. We contribute to theoretical development through refining the conceptualisation of PPI by unpicking the different roles that members of the public play as lay people, distinguishing this from the specific expertise that comes from direct experience of being a service user, carer or patient. We conclude that different types of knowledge are required for applied health research: methodological expertise, practice-based expertise, and the experiential expertise of patients or carers. While there are no guarantees, the scrutiny function performed by lay involvement in research funding panels can challenge the balance of power.