"I Am Human, Just Like You": What Intersectional, Neurodivergent Lived Experiences Bring to Accessibility Research

The Importance of Qualitative Research to EBP

Engaging people with lived experience of mental health system encounters in the design and actualization of continuing professional development initiatives for mental health professionals can have transformative systemic impacts. Yet, despite evidence that involving people with lived experience benefits mental health professional education, far less focus has been placed on how to engage people with lived experience in continuing professional development initiatives. Tensions persist regarding the role of lived experience perspectives in continuing professional development, as well as how to establish people with lived experience as partners, educators and leaders in a thoughtful way. We propose that meaningful and equitable partnerships with people with lived experience can be realized by engaging in critical reflexivity and by systematically challenging assumptions. This paper explores three topics: (1) the current state of engagement with people with lived experience in continuing professional development initiatives; (2) barriers to meaningful engagement and (3) recommendations for using critical reflexivity to support the involvement and leadership of people with lived experience in continuing professional development for mental health professionals.Patient or Public InvolvementThis viewpoint manuscript was co‐designed and co‐written by people with diverse lived and learned experiences. Each author's professional roles involve meaningfully and equitably partnering with and centring the perspectives of those with lived experience of mental health system encounters. In addition, approximately half of the authorship team identifies as having lived experience of accessing the psychiatric system and/or supporting family members who are navigating challenges related to mental health. These lived and learned experiences informed the conception and writing of this article.

BackgroundLong Covid is an unknown illness which has been shown to affect sufferers regardless of mild initial COVID-19 or age. There is still a lot unknown about long COVID illness. There has been a call to understand this illness not only from a professional standpoint but also through the lived experience of patients. Patient reported outcomes through lived experience research is one such angle. To date, no research has explored the overall lived experiences and long COVID illness trajectory perspectives of the patients. This study aimed to gather patient reported outcomes of their long COVID through lived experience research. It recruited adult participants aged 18-years and over who had been referred to a primary care integrated psychology service. The study employed qualitative research using semi-structured interviews and Interpretive Phenomenological Analysis methodology.ResultsA total of eighteen participants completed the study. From their lived experiences, the participants uncovered the varied symptoms of long COVID. They also uncovered their lived progression of living with an unknown chronic illness. Common themes included uncertainty, mental and social impacts, and the processes of self-advocacy, mastering their symptoms, subjective recovery and future coping.ConclusionThis study uncovered the lived experience of long COVID in participants. The results from this study uncovered the lived subjective biopsychosocial experiences of long COVID chronic illness. Traditionally, patients receive care and recommendations from healthcare professionals. However, as long COVID is a new illness, this care model was limited. The participants in the current study described being left with a sense of uncertainty and role confusion. However, participants were able to realize their locus of control over their long COVID illness progression. This illustrates that patients have the resources to uncover the unknowns of this new illness which could inform clinical practice and further research. This suggests that that long COVID needs to be approached from a biopsychosocial perspective which emphasises patient involvement.

Cancer and its management affect the quality of life (QOL) and lived experiences of adolescent survivors. We describe the QOL and document the lived experiences of adolescent cancer survivors at a tertiary hospital in southwestern Uganda. We conducted a mixed-methods, cross-sectional study using descriptive quantitative interviews using the summarized World Health Organization QOL questionnaire and qualitative in-depth interviews with adolescent cancer survivors at Mbarara Regional Referral Hospital in southwestern Uganda in July and August 2023. We explored participants' perceptions of their health as a percentage of the overall QOL scores and evaluated their lived experiences using an inductive approach. The study obtained ethical approval from the Research and Ethics Committee of the Mbarara University of Science and Technology. A total of 42 adolescents with a mean age of 13.2 (SD ± 2.9) years participated in the study. Twenty-three (55%) were males, and 24 (57%) had survived hematological malignancies. Participants reported very good (n = 12, 28.6%), good (n = 29, 69.1%), and poor (n = 1, 23%) QOL. Eleven (26.2%) and 30 (71.4%) participants reported they were very satisfied and satisfied with their health, respectively. Participants reported both positive and negative lived experiences. The positive experiences included persistent gratefulness, hope for a cure, and relationship restructuring. The negative experiences included concerns about body appearance, family separation, financial difficulties, and academic challenges. The QOL of adolescent cancer survivors in our setting is generally good and is influenced by support from family and the healthcare system. Their lived experiences are varied. Psychosocial services and peer support could improve perceived negative experiences.

The article examines life experience as a function of ensuring harmony between science and life across all scientific fields. Vitagenic education is a teaching approach based on actualizing (engaging) an individual's (student's) life experience, utilizing their mental (intellectual) and psychological potential for educational purposes. The aim of vitagen-oriented learning is to manifest the intellectual and psychological potential of the individual. It involves transforming a person's lived experiences into applicable life experience. Vitagenic experience encompasses individual mechanisms for implementing acquired life experience in real-life situations. The described ideas about personality open up a new approach to understanding the importance of education for a person. As a social institution, education is the source of continuity of events that occupy an important place and time in human life. Education is a source of both life and vitagenic experience. One of these positions is that the global function of education is to support the formation of the individual, actively shaping their lifestyle.

ObjectiveTo identify current practice and preferences about whether and how to acknowledge authors’ lived experience when authors contribute their lived experience expertise to research outputs in the context of health and healthcare. MethodsSurveys to people with lived experience and to academic researchers who had conducted research together (via consultation, partnership or lived-experience-led). ResultsResponses from 40 academic researchers and 36 lived experience contributors were included. Most respondents (n = 23 lived experience, 63.9 %; n = 28 academic, 70 %) reported an author’s lived experience should be publicly recognised. Approximately half recommended that affiliations should highlight authors’ lived experiences (n = 24 lived experience, 66.7 %; n = 19 academic, 47.5 %).When people with lived experience had co-authored outputs, their lived experience was not always acknowledged (n = 13/20, 65 % lived experience; n = 17/32 academic, 53.1 %). ConclusionMost respondents reported that a person’s lived experience should be recognised on health-related research outputs, but this did not consistently occur in practice. Practice ImplicationsTeams planning health-related research outputs should seek input from relevant authors about their preferred practices and terms for recognising their lived experience. Unless preferred otherwise, we recommend that the lived experiences of relevant authors are acknowledged within the output and that lived experiences are presented in affiliations.

A discussion of the assumption that Heidegger's philosophy in Being And Time provides a warrant for the study of lived experience. It is generally assumed, in nursing as in other disciplines, that Heidegger's philosophy points, uncontroversially, to the study of lived experience. It is also assumed that studies of this type will take the form of qualitative interviews which seek to explore the respondent's experience of a particular phenomenon and to elicit the meanings which the individual concerned attaches to that experience. Being And Time; the philosophical literature on Heidegger since 1999; the literature of experimental social psychology, 1970-2012. According to Heidegger, there is no such thing as 'lived experience'. The concept is embedded in the subject-object dualism that he is attempting to dismantle. In Heideggerian terms, interviews intended to explore 'lived experience' can only reproduce the voice of das Man, the 'They', not the voice of unique individuals. Methods more in keeping with Heidegger's philosophy include observation, naturalistic experiments, some forms of discourse analysis and conceptually associated lines of enquiry involving vocabularies of motive, scripts and the performative aspects of language use. Nursing researchers who wish to embrace Heidegger's philosophy as a basis for their work should abandon 'lived experience' interviews and adopt one of the alternative methods suggested above. Nursing researchers who wish to continue with 'lived experience' interviews should seek an alternative philosophical or theoretical basis for their work.

This novel study sought to understand lived experience and carer perspectives on the use of adaptive trials to evaluate interventions for eating disorders, in addition to understanding the factors and outcomes of most importance in eating disorder research and treatments from a lived experience perspective. A total of 73 people with either lived or carer experience consented, 70 started the questionnaire, and 36 (51%) completed all questions. Participants were asked Likert scale and open-ended questions to understand what factors and outcomes of eating disorder interventions were most important to them and understand their pre-existing knowledge of clinical trials. Two videos were then used to explain randomized controlled trials (RCTs) and adaptive trials and participants were asked their opinions, including perceived benefits and concerns, of each trial type. The thematic analysis found two key themes regarding factors important in eating disorder treatment: Person-centred care and Evidence-based and effective treatment; and two key themes regarding outcomes of treatment: Sustained, full recovery and The bigger picture. Both RCTs and adaptive trials were viewed favorably, however, there was a slight preference for adaptive trials. Key themes for both demonstrated perceived benefits and ethical, practical, and scientific considerations unique to each. Findings demonstrate the support of adaptive trials in eating disorder interventions from people with lived experience and their carers. It is recommended that researchers consider the use of adaptive designs and the incorporation of lived experience perspectives when designing future intervention trials. This novel study found that the use of adaptive trials in eating disorder intervention research is supported by people with lived experience and carers. Furthermore, the factors and outcomes of most importance to participants in this study are comparable to those previously identified in the emerging literature. The use of adaptive designs and the incorporation of lived experience are recommended in further clinical trials.

Science, technology, engineering and mathematics (STEM) fields have historically had low undergraduate retention rates. To aid in counteracting this, classroom exercises, or 'belonging interventions' can play a vital role in keeping new STEM students motivated through the "cultural shock" period of the college transition. However, much is still unknown about STEM instructors' perceptions on belonging interventions in STEM classrooms. Would understanding students' lives and experiences in the past and present help them make better informed decisions in their teaching practices? To answer this question, we drew upon results from a belonging intervention conducted by the Biology Education Research (BER) group at Portland State University. The activity was entitled: Our Lives Lived (OLL). The OLL activity was a self-report questionnaire exploring if STEM students agreed with various statements related to life and identity-related experiences. Student responses (n=692) were compiled and presented to STEM instructors at PSU via a survey instrument. Through both close-ended quantitative questions and open-ended qualitative prompts, we elicited both the facultys' reception to the OLL exercise as well as their opinions on the values and applications of a belonging intervention exercise in their own classroom. We had an overall faculty n = 92 for complete responses, and a bimodal distribution in initial reception of learning about their students' lived experiences. Further, inductive coding of their open-ended responses revealed 8 emergent values and applications that instructors believe hold true for using a belonging intervention exercise in their classroom. Consequently, this supports our hypothesis that acknowledging the value of "belonging" in education may be beneficial to students and faculty alike in achieving educational and teaching successes.

While the connection between teacher candidates (TCs)’ life and schooling experiences and their general self-efficacy beliefs about teaching is fairly well established, the present study explores which specific life and schooling experiences predict TCs’ cultural and linguistic self-efficacy beliefs toward teaching multilingual learners (MLLs). Through the theoretical lens of culturally efficacious evolution and self-efficacy beliefs, this quantitative study surveyed 554 Early Childhood to Eighth Grade TCs from Educator Preparation Programs (EPPs) at two Hispanic-Serving Institutions (HSIs) in South Texas, USA, using an instrument known as the SLEETS, or Schooling and Life Experiences on Efficacious Teacher Scale. Principal Component Analysis (PCA) and standard multiple regression analysis revealed relationship(s) between schooling, life experiences, and cultural and linguistic self-efficacy beliefs among the respondents. Findings indicate that first, the SLEETS is a valid and reliable instrument, and second, that TCs’ openness to cultural and linguistic diversity, post-secondary education, and appreciation of home and school knowledge significantly predicted their cultural and linguistic self-efficacy beliefs with regard to teaching MLLs. Implications for these findings include providing TCs with opportunities to identify, reflect, and evaluate the components that influence their self-efficacy beliefs toward teaching MLLs.

AimThe elderly in social isolation often referred to as older people who experience social alienation with little social support from their family, peers, and community suffer from a poor quality of life and well-being. Since their life experiences are affected by a range of factors from different levels, this study seeks to investigate their current life situations and experiences from a social systems perspective.MethodsA qualitative study was conducted to enrich the understanding of their current life situations and experiences and to generate corresponding practice implications. In this study, there were 13 elderly participants in social isolation, which were users of a social service agency in Hong Kong. They took part in a semi-structured individual interview, sharing their life stories about their daily lives, social relationships, and sense of well-being. Qualitative results were analyzed based on these dimensions.ResultsResults showed that the elderly participants in social isolation had a low level of social support and participation in social activities. Their life experiences and situations were affected by multiple levels of factors that were interrelated.ConclusionThe results support the application of the social systems perspective in investigating the living conditions of the elderly in social isolation. The corresponding practice implications were also discussed.

This article is part of the EKB-study which explores lived crisis and treatment experiences of mental health professionals in Berlin and Brandenburg. It addresses the disclosure of mental health workers' lived experiences in their workplace. An online survey was conducted among 182 mental health professionals, containing questions on disclosure of lived experiences. Data were analyzed descriptively and analytically. Participants reported disclosure mainly to supervisors and affiliated colleagues. Experiences were mostly positive, with severe negative exceptions. Central motives against disclosure were fear of vulnerability, fear of compromising professional identity, and shame. Disclosure of lived crisis experiences is not always the proper strategy for mental health professionals. Disclosure may be a means of reducing public and internalized stigma.

Objective The aim of this study was to explore management understanding of the lived experience required for designated lived experience or peer roles within mental health. Method This qualitative study used semi-structured interviews and one focus group with 29 participants employed in diverse management roles from the public and not-for-profit health and community sector in Queensland, Australia. Results The findings indicate a lack of consensus in defining 'lived experience', including what lived experience is required to be eligible for designated roles. Although some participants were clear on what designated roles added to the workforce, uncertainty and attempts to avoid stigma led to some participants questioning the need for designated roles. Conclusion This study suggests the ongoing expansion of the lived experience workforce is affected by challenges in defining 'lived experience' as a requirement for designated roles and fears regarding stigmatised identities. What is known about the topic? In the mental health sector, opportunities and challenges exist in attempting to effectively incorporate the emerging lived experience or peer workforce. Research has highlighted the need for support from senior management, the need for role clarity and the risk of 'othering' for the lived experience workforce. What does this paper add? This paper responds to the gap in existing research on the experiences of management in defining and articulating their understanding of lived experience and potential impact of uncertainty and inconsistency in understanding for the lived experience workforce. What are the implications for practitioners? This study identifies the need to strengthen management understanding of lived experience to facilitate ongoing development of lived experience roles.

Dominant biomedical perspectives in health care view impairment as incompatible with living a good life. This leads to care that is often focused on "fixing," falling short of supporting nuanced experiences of living a good life among people experiencing impairment. For many people, including those living with and beyond cancer, impairment is a common and "normal" part of everyday life. Scholars suggest that the arts are a powerful tool to challenge dominant perspectives and enhance understanding of complex human experiences. Therefore, this study aimed to explore and describe experiences of a good life from the perspective of women living with cancer through a series of community-based art workshops. Using an arts-based and community-based participatory research approach, we facilitated two series of virtual, community arts-based workshops. A total of 10 women participated in the study. Workshops were video-recorded, and postworkshop, individual interviews were completed. Data collection also consisted of photographs of participants' artwork. Data were analyzed using interpretive description. Our findings offer two interrelated themes that constitute key components of a good life: (a) the centrality of human connection and social relationships and (b) recognizing dynamic processes of transformation. Participants described the arts-based workshops as a valuable tool to explore, express, and support their experiences of a good life. This study provides important insights into understanding the complex experience of living a good life with cancer from personal perspectives. It also illuminates the potential of community arts in fostering positive experiences of living well with impairment.

Background Incurable cancer significantly affects an individual’s life, requiering comprehensive palliative care (PC). With early PC now recommended but poorly integrated, it is essential to address patients’ experiences and concerns to ensure successful early PC integration. Aim: This study aims to investigate the experiences of life in the initial period following a diagnosis of incurable cancer to inform early PC integration. Methodology The study employed a phenomenological hermeneutical framework, drawing inspiration from interpretive descriptive methodology. Thirteen participants diagnosed with incurable cancer were purposively recruited. Data were generated through semi-structured, in-depth interviews exploring patients’ experiences of lived life, their needs and wishes. Data analysis followed an iterative process of constant comparison and thematic development. Results One main theme was identified throughout the analysis: Standing still in the storm. Three sub-themes were identified reflecting varying manifestations innhow doing so, and navigating their challenging circumstances. peace: 1) The urge to take action, 2) Clarity and awakening in the face of reality, and 3) Changed self-perception. As their understanding of their illness deepened, the patients experienced a shift towards reconciliation. Conclusion The experiences of patients living with incurable cancer reveal a complex interplay of psychological, emotional, and existential responses. It is essential that healthcare professionals address existential concerns within clinical care. By acknowledging and supporting patients’ existential struggles, discussions about sensitive topics becomes more natural and better recieved by the patients. .