Relevant Life Experiences Research Articles

Cancer Experience of Care Improvement Collaboratives in the National Health Service in England

NHS England started the work described in this article with the ambition of using insight and feedback from the adult National Cancer Patient Experience Survey to grow coproduced service improvements leading to improved patient centred quality outcomes in experience for cancer patients. Based on the Institute for Healthcare Improvement’s Breakthrough Collaborative Series, the approach of the Cancer Experience of Care Improvement Collaboratives (CIC) in the English healthcare system was developed, initially with 19 NHS provider organisation teams in 2019 as a face-to-face model, then developing into two collaboratives with an additional 15 NHS provider organisation teams in Cohort 2 and 8 teams in Rare & Less Common Cancers in a virtual framework. Each cohort has reported improvements in patient experience, staff experience and team working, but more fundamentally, have been able to describe a cultural shift in the way they work, together with people, leaving a lasting impact and legacy of this work. Key learning has been recognised with the increasing emphasis on involving people with relevant lived experience as partners and colleagues in the collaborative, alongside flexibility, responsiveness and adaptability as key to enabling project teams to continue where COVID-19 pressures allowed to participate.

Synthesis of the Evidence on What Works for Whom in Telemental Health: Rapid Realist Review.

BackgroundTelemental health (delivering mental health care via video calls, telephone calls, or SMS text messages) is becoming increasingly widespread. Telemental health appears to be useful and effective in providing care to some service users in some settings, especially during an emergency restricting face-to-face contact, such as the COVID-19 pandemic. However, important limitations have been reported, and telemental health implementation risks the reinforcement of pre-existing inequalities in service provision. If it is to be widely incorporated into routine care, a clear understanding is needed of when and for whom it is an acceptable and effective approach and when face-to-face care is needed.ObjectiveThis rapid realist review aims to develop a theory about which telemental health approaches work (or do not work), for whom, in which contexts, and through what mechanisms.MethodsRapid realist reviewing involves synthesizing relevant evidence and stakeholder expertise to allow timely development of context-mechanism-outcome (CMO) configurations in areas where evidence is urgently needed to inform policy and practice. The CMO configurations encapsulate theories about what works for whom and by what mechanisms. Sources included eligible papers from 2 previous systematic reviews conducted by our team on telemental health; an updated search using the strategy from these reviews; a call for relevant evidence, including “gray literature,” to the public and key experts; and website searches of relevant voluntary and statutory organizations. CMO configurations formulated from these sources were iteratively refined, including through discussions with an expert reference group, including researchers with relevant lived experience and frontline clinicians, and consultation with experts focused on three priority groups: children and young people, users of inpatient and crisis care services, and digitally excluded groups.ResultsA total of 108 scientific and gray literature sources were included. From our initial CMO configurations, we derived 30 overarching CMO configurations within four domains: connecting effectively; flexibility and personalization; safety, privacy, and confidentiality; and therapeutic quality and relationship. Reports and stakeholder input emphasized the importance of personal choice, privacy and safety, and therapeutic relationships in telemental health care. The review also identified particular service users likely to be disadvantaged by telemental health implementation and a need to ensure that face-to-face care of equivalent timeliness remains available. Mechanisms underlying the successful and unsuccessful application of telemental health are discussed.ConclusionsService user choice, privacy and safety, the ability to connect effectively, and fostering strong therapeutic relationships need to be prioritized in delivering telemental health care. Guidelines and strategies coproduced with service users and frontline staff are needed to optimize telemental health implementation in real-world settings.Trial RegistrationInternational Prospective Register of Systematic Reviews (PROSPERO); CRD42021260910; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021260910

Outcomes of a holistic admissions process in a baccalaureate nursing program

A holistic admissions process was developed and implemented in a baccalaureate nursing program to improve student selection and student success. The goals were to increase multiple aspects of student diversity and to identify students with the potential for success and those who reflect the mission, vision, and core values of the school. A holistic admissions task force was formed in 2016 at the college of nursing (CON). The team created three measures of admission criteria: 1) open-ended essay questions providing for students to discuss relevant life experiences, 2) an online self-assessment of student attributes, and 3) overall and preprofessional grade point average (GPA) as metrics. Following the inception of the holistic admission process, student outcome data were reviewed with each admission cycle and the process was adjusted over time. Holistic admissions is a method of evaluating multiple dimensions of applicants for admission. Student success is impacted by many factors including teaching, individual behaviors, student support, and college progression and graduation standards.

Affirmative neuropsychological practice with transgender and gender diverse individuals and communities

Objective: To provide guidance and resources on how to practice culturally safe and humble neuropsychology with transgender and gender diverse (TGD) individuals and communities. Methods: We gathered a multidisciplinary team of clinicians with relevant professional and/or lived experience to review pertinent literature, discuss important concepts, and identify key resources. From this process, we outline practical steps to advance gender affirmative neuropsychological practice. Results: Professional awareness and knowledge regarding how to gather context-relevant, gender identity information is critical. TGD individuals form a heterogenous group; a one-size-fits-all approach is not adequate. It is incumbent upon neuropsychologists to engage in clinical and research practices in a manner that does not perpetuate gender minority stress and trauma. Creating an open, safe environment of care requires intentionality and careful thinking to determine what information is relevant for a particular referral question. We provide recommendations and resources for neuropsychologists. Conclusion: When neuropsychologists are proactive, responsible, and intentional, they can better provide individualized, person-centered, and trauma-informed care to TGD individuals.

Adapting a codesign process with young people to prioritize outcomes for a systematic review of interventions to prevent self-harm and suicide.

BackgroundResearch and clinical outcomes that matter to people with lived experience can significantly differ from those outcomes studied by researchers. To inform a future Cochrane review of suicide and self‐harm prevention interventions, we aimed to work with young people with relevant lived experience to agree on priority outcomes.DesignFour participatory codesign workshops were completed across two sites (New Zealand, United Kingdom) with 28 young people in total. We iteratively adapted the methods over the course of the study.Results‘Improved coping’ and ‘safer/more accepting environment to disclose’ were the final top‐rated outcomes. ‘Reduction of self‐harm’ was considered a low priority as it could be misleading, stigmatizing and was considered a secondary consequence of other improvements. In contrast to typical research outcomes, young people emphasized the diversity of experience, the dynamic nature of improvement and holistic and asset‐based framing. Methodologically, dialogue using design materials (personas) to thematically explore outcomes was effective in overcoming the initial challenge of disparate quantitative ratings.DiscussionThe results will directly inform the development of a Cochrane review, enabling identification of whether and how outcomes of most importance to young people are measured in trials. Rather than producing discrete measurable outcomes that could be easily added to the systematic review, the young people challenged the academic conceptualization of outcomes, with implications for future evidence synthesis and intervention research, and for future codesign.Patient or Public ContributionYoung people with lived experience were codesigners of the outcomes, and their feedback informed iterative changes to the study methods.

Impact on public attitudes of a mental health audio tour of the National Gallery in London.

The arts have the potential to increase public awareness about mental health and reduce stigma. However, arts-based projects to raise awareness have been small-scale. In this study, a mental health-awareness audio tour of The National Gallery in London was co-produced and narrated by young adults with relevant lived experience. The study investigated the acceptability of the tour to the public and evaluated its impact on public attitudes about mental health. Participants were Gallery visitors over four consecutive days. The tour led visitors on 10 stops through the Gallery. Each stop focused on artworks and Gallery spaces, challenged common myths about mental health, and invited visitors to consider their personal views. Participants completed measures of mood and attitudes about mental health pre- and post-tour and provided narrative feedback. Pre-tour, participants (N= 213) reported high levels of happiness, compassion towards people with mental health conditions, comfort talking about mental health, and positive attitudes about mental health. Post-tour, participants (N= 111) reported significant increases in happiness, comfort, and positive attitudes. In feedback, participants (N= 85) reported that strengths of the tour were the music, inclusion of lived experience, art and mental health links, and reported that the tour was informative, innovative, and improved mental health awareness. The tour increased positive attitudes, despite positive baseline attitudes, indicating the feasibility of arts-based interventions in major venues to reduce stigma. Sampling limitations and participant retention suggest that arts-based projects to raise awareness should target more diverse audiences and consider data collection strategies in large venues.

Service user perspectives of community mental health services for people with complex emotional needs: a co-produced qualitative interview study

BackgroundThere is consensus that services supporting people with complex emotional needs are part of a mental health care system in which change is needed. To date, service users’ views and co-production initiatives have had little impact on the development of interventions and care. This needs to change, and our paper evidences the experiences and perspectives of a diverse range of people on how community services can best address the needs of people with complex emotional needs.MethodsA co-produced qualitative research study. Lived experience researchers led data collection and analysis. Individual interviews were conducted with 30 people across England who had a diverse range of experiences and perspectives of using community services for complex emotional needs. Participants were asked about their experiences of using community services for their mental health, and views on how community services can best address their needs. Thematic analysis was used to analyse the data.ResultsParticipants reported some experiences of good practice but also of experiences of severely stigmatising interventions, a lack of effective support and service fragmentation. Relational Practice was identified as the central overarching theme and describes how community services can best support people with complex emotional needs. This approach involves care delivered in a non-stigmatising, individualised and compassionate way and care that is trauma-informed. It involves care that is planned collaboratively with service users to ensure their multiple needs are addressed in a flexible, holistic and consistent way which accounts for the long-term and fluctuating nature of their needs.ConclusionsRelational practice approaches have potential to facilitate better community care for people with complex emotional needs. Research and service development are needed to examine how best to implement such approaches across the mental health service system. This work must be co-produced with people with relevant lived experience, their carers and the professionals who support them.

Sharing our experience: guidelines and examples for incorporating relevant personal narrative into library instruction to support, motivate, and connect with students

This personal narrative describes strategies for incorporating relevant lived experience as narrative storytelling during library instruction in an academic classroom setting. Integrating personal narrative into curriculum is proposed as a technique for expanding instruction librarians’ development as teachers and mentors, and for motivating and enhancing connections with students. Guidelines for creating narratives founded on the principles of Buddhist “right speech” are provided, as well as detailed examples of personal narratives integrated within the context of a graduate-level research workshop series.

Perceptions of developing creativity in piano performance and pedagogy: An interview study from the Chinese perspective

Although creativity in music is a topic widely considered and studied among global music educators, it has received limited attention in China while quite a number of Chinese pianists have been recognized on the international stage. How do Chinese pianists and professors perceive creativity in piano performance? How would they nurture creativity in the performances of their own and/or their students? Employing the Grounded Theory approach, this study investigated the perceptions of creativity in piano performance of 13 eminent pianists and professors from Beijing, Shanghai and Guangzhou through a series of semi-structured interviews. The interviewees identified several factors related to the development of musical creativity in piano performance, including pianists’ relevant knowledge, their musical and life experiences, imagination and association, reflection and musical judgment, performing environments, and the Chinese cultural elements of holism and dynamism. Implications for teaching include the encouragement of a balance between Western and Chinese epistemologies in both analytical and abstract thinking. In nurturing students’ creativity in piano performances, students should live in culture-related contexts, and understand the world in a holistic epistemology with an abstract imagination. This study has further provided a more holistic understanding of how to nurture musical creativity with an alternative perspective.

Service user experiences and views regarding telemental health during the COVID-19 pandemic: A co-produced framework analysis.

The prominence of telemental health, including providing care by video call and telephone, has greatly increased during the COVID-19 pandemic. However, there are clear variations in uptake and acceptability, and concerns that digital exclusion may exacerbate previous inequalities in access to good quality care. Greater understanding is needed of how service users experience telemental health, and what determines whether they engage and find it acceptable. We conducted a collaborative framework analysis of data from semi-structured interviews with a sample of people already experiencing mental health problems prior to the pandemic. Data relevant to participants' experiences and views regarding telemental health during the pandemic were identified and extracted. Data collection and analysis used a participatory, coproduction approach where researchers with relevant lived experience, contributed to all stages of data collection, analysis and interpretation of findings alongside clinical and academic researchers. The experiences and preferences regarding telemental health care of the forty-four participants were dynamic and varied across time and settings, as well as between individuals. Participants' preferences were shaped by reasons for contacting services, their relationship with care providers, and both parties' access to technology and their individual preferences. While face-to-face care tended to be the preferred option, participants identified benefits of remote care including making care more accessible for some populations and improved efficiency for functional appointments such as prescription reviews. Participants highlighted important challenges related to safety and privacy in online settings, and gave examples of good remote care strategies they had experienced, including services scheduling regular phone calls and developing guidelines about how to access remote care tools. Participants in our study have highlighted advantages of telemental health care, as well as significant limitations that risk hindering mental health support and exacerbate inequalities in access to services. Some of these limitations are seen as potentially removable, for example through staff training or better digital access for staff or service users. Others indicate a need to maintain traditional face-to-face contact at least for some appointments. There is a clear need for care to be flexible and individualised to service user circumstances and preferences. Further research is needed on ways of minimising digital exclusion and of supporting staff in making effective and collaborative use of relevant technologies.

Fostering Multilingual Children’s Language Development through iPad Apps

AbstractThis article shares a case study of a classroom of multicultural and multilingual children in an early childhood center to explore how iPad apps can support young children in learning English as an additional language. Situated in Sydney, Australia, this study found that iPad apps have the potential to promote 4‐ and 5‐year‐old children's language learning, including their vocabulary development. During the iPad sessions, the children were excited to engage with the app and share their relevant life experiences with their friends and their teacher. In this classroom, the lead teacher believed in the importance of iPad apps to encourage young children's language learning and multimodal meaning making. However, there was a disconnect between her beliefs and her practices, which suggests that targeted professional development could be instrumental in fostering early childhood educators’ ability to scaffold children's English language development with iPad apps.

Patient and public involvement prior to trial initiation: lessons learnt for rapid partnership in the COVID-19 era

Plain English summaryPatient and Public Involvement (PPI) describes the active involvement of patients and the public in the research process. Through PPI, patients and members of the public are increasingly involved in the design and conduct of clinical trials. PPI has been shown to improve the quality and relevance of research.During the COVID-19 pandemic, clinical trials have been playing a vital role in helping us find ways to prevent and treat the infection and improve our understanding of the virus. It is important that patients and the public are actively involved in deciding how COVID-19 research is carried out. Unfortunately, Research Ethics Committees in the UK have seen far less PPI for COVID-19 research studies compared with research before the pandemic. A key reason for this is that research is being designed much faster than normal and researchers may feel they do not have time to properly involve patients and the public.In this paper, we share our experiences of PPI for a COVID-19 clinical trial. We show that it is possible to rapidly involve patients and the public in COVID-19 clinical trials. We also explain how the design of the clinical trial was changed in response to feedback from public contributors. Lastly, we discuss the wider learning from this process which might be useful for researchers planning PPI activities for COVID-19 clinical trials in the future.Background:Clinical trials are playing a critical role in the global public health response to the COVID-19 pandemic. Despite the increasing recognition of the value of PPI in clinical trials, just 22% of the COVID-19 research proposals reviewed by Research Ethics Committees in the UK at the start of the pandemic reported PPI. There is a perception that PPI might result in delays in delivering research and therefore delays in obtaining important results. In this paper, we report our experience of rapid PPI for a COVID-19 clinical trial.Methods:RAPID-19 is a COVID-19 clinical trial which was planned to be submitted for fast-track ethics review in the United Kingdom. During the development of the trial protocol, the PPI Panel at the London School of Hygiene & Tropical Medicine Clinical Trials Unit was involved in the design of the study. The meeting with the PPI Panel lasted just over 1 h and was conducted by teleconference.Results:Although we only had a short period of time to explore the study with the PPI Panel, we were able to gain valuable insight into how the trial would be perceived by potential trial participants. Substantive changes were made to the trial to improve the acceptability of the research without compromising the study timelines. Having access to public contributors with relevant lived experience is an important resource for a Clinical Trials Unit and is critical for rapid PPI. The move to remote working due to lockdown required virtual discussions which helped to overcome some of the barriers to organising face-to-face meetings at short notice.Conclusions:PPI for clinical trials can be conducted in a time-efficient manner within the pressured environment of a pandemic. Involving PPI contributors at an early stage in protocol development maximised the opportunity to shape and influence the trial as well as limited potential delays which could occur if changes to the protocol had to be made at a later stage.

Treatment Preferences for Cardiac Procedures of Patients With Chronic Kidney Disease in Acute Coronary Syndrome: Design and Pilot Testing of a Discrete Choice Experiment.

Background:Chronic kidney disease is associated with a high incidence of acute coronary syndrome and related morbidity and mortality. Treatment choices for patients with chronic kidney disease involve trade-offs in the potential benefits and harms of invasive management options.Objective:The objective was to quantify preferences of patients with chronic kidney disease toward invasive heart procedures.Design:Design and pilot a discrete choice experiment.Setting:We piloted the discrete choice experiment in 2 multidisciplinary chronic kidney disease clinics in Calgary, Alberta, using an 8-question survey.Patients:Eligible patients included those aged 18 years and older, an estimated glomerular filtration rate < 45 mL/min/1.73 m2, not currently receiving dialysis, and able to communicate in English.Measurements:Quantification of the average importances of key attributes of invasive heart procedures.Methods:We identified attributes most important to patients and physicians concerning invasive versus conservative management for acute coronary syndrome, using semi-structured qualitative interviews. Levels for each attribute were derived from analysis of early invasive versus conservative acute coronary syndrome management clinical trials and cohort studies, where subgroups of patients with chronic kidney disease were reported. We designed the pilot study with patient partners with relevant lived experience and considered statistical efficiency to estimate main effects and interactions, as well as response efficiency. Hierarchical Bayesian estimation was used to quantify average importances of attributes.Results:We recruited 43 patients with chronic kidney disease, mean (SD) age 67 (14) years, 67% male, and 35% with a history of cardiovascular disease, of whom 39 completed the survey within 2 weeks of enrollment. The results of the pilot revealed acute kidney injury requiring dialysis and permanent kidney replacement therapy, as well as death within 1 year were the most important attributes. Measures of internal validity for the pilot discrete choice experiment were comparable to those for other published discrete choice experiments.Limitations:Discrete choice experiments are complex instruments and often cognitively demanding for patients. This survey included multiple risk attributes which may have been challenging for some patients to understand.Conclusions:This pilot study demonstrates the feasibility of a discrete choice experiment to quantify preferences of patients with chronic kidney disease toward the benefits and trade-offs related to invasive versus conservative management for acute coronary syndrome. These preliminary findings suggest that patients with chronic kidney disease may be on average similarly risk averse toward kidney replacement therapy and death. This pilot information will be used to inform a larger discrete choice experiment that will refine these estimates of patient preferences and characterize subgroups with distinct treatment preferences, which should provide new knowledge that can facilitate shared decision-making between patients with chronic kidney disease and their care providers in the setting of acute coronary syndrome.

HIV Community-Level Stigmatizing Attitudes in Tanzania: Perspectives from Antenatal Care.

Introduction:Stigma significantly impacts retention in HIV care and quality of life among people living with HIV. This study explored community-level HIV stigma from the perspective of patients and healthcare workers in antenatal care (ANC) in Moshi, Tanzania.Methods:We conducted in-depth interviews with 32 women (20 living with HIV), key-informant interviews with 7 ANC clinic employees, and two focus group discussions with 13 community health workers.Results:Themes emerged related to drivers and manifestations of stigma, resilience to stigmatizing attitudes, and opportunities to address stigma in ANC. Drivers of stigma included a fear of infection through social contact and associations of HIV with physical weakness (e.g., death, sickness) and immoral behaviour (e.g., sexual promiscuity). Manifestations included gossip, physical and social isolation, and changes in intimate relationships. At the same time, participants identified people who were resilient to stigmatizing attitudes, most notably individuals who worked in healthcare, family members with relevant life experiences, and some supportive male partners.Conclusion/Recommendations:Supportive family members, partners, and healthcare workers can serve as role models for stigma-resilient behaviour through communication platforms and peer programs in ANC. Manifestations of HIV stigma show clear links to constructs of sexuality, gender, and masculinity, which may be particularly impactful during pregnancy care. The persistence of stigma emphasizes the need for innovation in addressing stigmatizing attitudes in the community. Campaigns and policies should go beyond dispelling myths about HIV transmission and immorality to innovate peer-led and couples-based stigma reduction programming in the ANC space.

Social work students on the island of Ireland: a cross-sectional survey

ABSTRACT Understanding the characteristics, motivations, and experiences of student social workers is important to inform their professional education and support needs. To date, there has been relatively little research about social work students in Ireland, both North and South. This study reports on an all-Ireland survey of students beginning their social work course in Autumn 2018 in the six Universities delivering social work education. It describes the characteristics of the student cohort, examines the motivations behind choosing this career, and highlights some of the potentially relevant life experiences and beliefswhich may have contributed to their ambition to join the social work profession. Implications for social work education, recommendations for curriculum development, workforce planning, and the provision of appropriate support for students are discussed.

Representation through Lived Experience: Expanding Representative Bureaucracy Theory

ABSTRACT This study draws on the insights of managers in the behavioral health treatment system to explore the value of persons who bring lived experience to their organizational positions. Within these organizations, persons with relevant lived experience occupy various nonclinical and clinical positions. When facilities incorporate workers with lived experience, managers observe increased levels of trust between clients and service providers, an enhanced client-centered perspective among service providers, and higher quality in the services provided. This study may guide managers in considering how (or whether) human service organizations might institutionalize lived experience as a mechanism to help create a representative bureaucracy.

A typology of student diversity and an inclusive student learning support system: Insights for higher education

Higher education today is characterized by a highly diversified student population. This, in turn, calls for greater inclusivity in higher education. To answer this call, this paper introduces a typology of student diversity in, and an inclusive student learning support system for, higher education. More specifically, the typology of student diversity suggests that students in higher education may comprise of adults, school leavers, indigenous students, low socio-economic background students, and international students. The typology explains each student classification in detail using five relevant factors, namely autonomy, anxiety, motivation, discipline, and life experience. Finally, the paper offers some pertinent insights to create an inclusive student learning support system for higher education based on the insights derived from the typology of student diversity in higher education.

The Great Reveal: The Experiences of a Registered Music Therapist with a disability: an arts-based research project

Disability is a human phenomenon experienced not by a small minority but a large percentage of our global population. Disability is encountered by people of all ethnicities, religions, genders (and non-conforming), sexualities, socio-economic backgrounds, and ages. Recent music therapy literature has advocated for a diverse workforce and others describe the value in music therapists adopting an intersectional lens, which considers the interconnectedness of social and political identities. However, there is limited dialogue featuring lived experiences of music therapists of underrepresented identities, such as disability. This research sought to canvass the experiences of Australian Registered Music Therapists who identify as having a disability and to explore how their disability may impact or inform their practice. One Australian Registered Music Therapist (RMT) who identified as disabled was interviewed. The student-researcher engaged with arts-based research through music composition to allow an embodied analysis and to present results in an accessible format. Several themes were revealed, including; hidden disability, disclosure of disability, alliance, positive transference, visibility, and identity. These findings demonstrate the importance of lived experiences in the music therapy community and calls to amplify diverse voices of those with disabilities and other intersecting identities within our profession. Acknowledging the work of disabled music therapists may further challenge ableist attitudes in our society and provide options to participants who might prefer to work with therapists who have relevant lived experience.

Representation through Lived Experience: Expanding Representative Bureaucracy Theory

This study draws on the insights of managers in the behavioral health treatment system to explore the value of persons who bring lived experience to their organizational positions. Within these organizations, persons with relevant lived experience occupy various nonclinical and clinical positions. When facilities incorporate workers with lived experience, managers observe increased levels of trust between clients and service providers, an enhanced client-centered perspective among service providers, and higher quality in the services provided. This study may guide managers in considering how (or whether) human service organizations might institutionalize lived experience as a mechanism to help create a representative bureaucracy.

Do personnel with lived experience cultivate public values? Insights and lessons from mental healthcare managers.

Health organizations charged with addressing public problems sometimes employ persons with relevant lived experience in meaningful organizational roles. Because of their prior experience, these individuals have intimate knowledge of the subject matter that professional training and education cannot replicate. Mental health treatment facilities in particular have demonstrated a growing trend toward incorporating staff members with lived experience. This study conducted semi-structured interviews with senior-level managers of organizations in this field to gain insight into the public values associated with this practice. Findings reveal that several public values, including dialogue, social cohesion, sustainability, productivity, and altruism, are cultivated when treatment facilities incorporate staff members with lived experience into service delivery. This study concludes with lessons for mental health leaders seeking to address mental illness.