Lived Experience Research Articles

Pregnancy after amputation: A national survey of prosthetic and mobility outcomes in women with lived experience

Background: In pregnancy, women with limb loss or deficiency or lower extremity amputations (LEAs) may experience physiologic changes affecting mobility, prosthesis use, and/or pain. However, little is known about the pregnancy-related experiences of these women. Objective: The objective of this research was to characterize pregnancy-related experiences including complications, impact on prosthesis use, gait aid use, and mobility for women with LEAs. Study Design: A national, self-administered online survey. Data were analyzed using descriptive statistics. Thematic analyses were performed on open-ended questions. Participants were women with 1 or more LEA(s) who had been pregnant within the last 5 years and were recruited via social media, LEA clinics, and word of mouth. Results: Sixteen women from 4 Canadian provinces completed the survey describing 31 pregnancies. A total of 9 had acquired LEAs and 7 had congenital LEAs. All but 1 respondent had unilateral LEAs; most common level was transfemoral (38%). All wore a prosthesis daily and were K-level 4 ambulators. Five (31%) had to decrease or stop prosthesis use, and 6 (25%) required a gait aid or wheelchair during pregnancy. The most common pregnancy-associated complications were low back pain (64%), changes to limb size/prosthesis comfort (64%), reduced balance (44%), falls (38%), and postpartum depression (25%). Conclusion: This survey is the first to describe the many unique challenges women with LEAs may experience in pregnancy and highlights important information for women with LEAs, their health care providers, their rehabilitation team, and avenues for future research.

Acquiring Resourcefulness Skills: Formal Versus Informal Training.

Although resourcefulness has been successfully taught during formal training programs, it can also be acquired informally through life experiences. Family caregivers have many opportunities for learning to be resourceful on their own and those who participate in research may acquire knowledge or skills that increase their resourcefulness. The effects of such differential experiences on the resourcefulness of family caregivers have not been examined over time. This study compared changes in resourcefulness over time in caregivers who received no intervention, an educational program, biofeedback, or Resourcefulness Training©. This longitudinal analysis of data from a randomized controlled trial involved 219 caregivers of persons with bipolar disorder who completed the Resourcefulness Scale© before no intervention, an educational program, biofeedback, or Resourcefulness Training, and at 6 and 12 months afterward. Differences across the groups were examined using RMANOVA. Patterns of mean scores including differences and linear trends in resourcefulness for the four groups were examined. Overall, caregivers increased linearly in resourcefulness over time [F(1,215) = 4.836, P = .015]. Although each group showed improvement in resourcefulness, caregivers who received Resourcefulness Training showed the greatest improvement from baseline (estimated mean = 88.244, SE = 2.734) at both 6 months (estimated mean = 92.610, SE = 2.813, P = .026) and 12 months post-intervention (estimated mean = 95.049, SE = 2.752, P = .003). Consistent with resourcefulness theory, the findings showed caregivers of persons with bipolar disorder became more resourceful over time with or without formal training. However, those who received Resourcefulness Training demonstrated resourcefulness skills sooner and to a greater extent, thereby providing the rationale for formal Resourcefulness Training programs.

Designing a Measure of Body Image: Cognitive Interview Findings from an Adolescent and Young Adult Cancer Sample.

Purpose: A cancer diagnosis in adolescence and young adulthood significantly impacts a person's quality of life, particularly concerning identity, self-esteem, and subsequently, body image. This study aims to develop a psychometrically-sound patient-reported outcome measure of body image for adolescent and young adult (AYA) oncology patients that was guided by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS) Scientific Standards and our past concept elicitation interviews with AYAs. Methods: We conducted a multi-step approach involving item identification, refinement, generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYA patients participated, ensuring representation across educational levels, gender, treatment status, and cancer type. Results: Translatability and reading level reviews facilitated language adjustments. Cognitive interviews revealed that 76% of AYAs found the 50 candidate items assessing body image concerns to be easy to answer. AYAs reported that the body image items captured their lived experiences. Three items were excluded due to comprehension difficulties. Conclusion: This study addresses the critical gap in validated measures for assessing body image in AYA oncology patients. Interview findings provided evidence for the content validity and comprehensibility for 47 items assessing body image. The next steps involve large-scale psychometric testing to evaluate the reliability and validity of the body image items to form an item bank allowing the design of short forms or use of computerized-adaptive testing. Ultimately, this work lays the foundation for developing interventions to mitigate the impact of cancer on AYAs' body image during diagnosis, treatment, and recovery.

Mediating the Sugar Baby Imaginary: Popular Narratives About Gender and Sexuality in Sugar Dating

The internet is rife with opportunities to participate in dating practices, discourses about gender, romance, and sexuality, and, increasingly, efforts to restrict sexual expression. Therefore, it is important to square popular discourse with the perspectives and thought processes that color women’s participation in romantic and sexual phenomena. This article explores how media narratives about women who pursue relationships at the intersection of intimacy, social class, and labor map onto the realities of their lived experiences. Specifically, I compare an analysis of popular press articles about sugar dating—a mutually beneficial relationship practice wherein people engage in frank negotiations of companionship, intimacy, and material benefits—with interviews with 13 women who have participated in sugar dating. I sought to understand how these women defined sugar dating, what motivated them to sugar date, and where their sugar relationships felt most rewarding or difficult. I argue that, for women, sugar dating can be a site of both labor and leisure. These interviews complicate how contemporary press coverage tends to frame sugar dating, revealing important insights about how women may conform to but also challenge popular narratives about their identities, labor, sexual desires, and agency. My findings, therefore, constitute a narrative about sugar dating that captures the nuances of women’s thinking and operating logics. This is a crucial step forward in elevating the voices of those who participate in sugar dating and other romantic and sexual practices.

Leave or stay? The determinants of the migration behavior of university graduates in Shanghai

ABSTRACT Millions of university graduates in China either stay in the cities where they go to universities (for their bachelor’s degree) or migrate to other areas each year. What factors determine their destination choice? This paper investigates migration patterns of university graduates from Shanghai among the university city, hometown, and other cities, and the roles of general factors and special Chinese factors such as hukou in graduate mobility. The main findings are as follows. First, key factors that attract graduates to stay in the university city, return to their hometown, or go to other cities are different and one factor may not have the same impact. Second, there are specific spatial patterns of migration from different types of hometowns to three destination types, as different types of hometowns offer different life experiences as well as opportunities in the spatial administrative system. There is a strong preference for Chinese graduates to move up the urban hierarchy to bigger cities than their hometowns. Third, the impacts of some general factors such as housing price, social capital, and human capital are similar to those of Western countries. The impacts of hukou vary. Although graduates have local hukou in their hometowns, most graduates from big cities, towns, and villages prefer not to return to their hometowns. Only graduates from small and medium-sized cities consider returning to their hometowns. But if graduates go to other cities, they do consider hukou factor. Our research has significant implications for urban and regional development and talent policies in China.

AHP SO03 - The role of the specialist upper gastrointestinal (UGI) benign dietitian in the management of benign UGI disorders – a review of the outpatient referral base

Abstract Background Benign UGI disorders can negatively affect patients’ nutritional status by impacting on oral intake and/or through malabsorption. GSTT performs a high volume of benign UGI surgeries and is a tertiary referral centre for oesophageal reconstructions and complex hernias. The role of the dedicated specialist UGI benign dietitian was established in 2019 to provide dietetic expertise to the UGI multidisciplinary team (MDT). It supports patients before and after surgery with the aim of reducing post-operative complications, length of hospital stay, re-admissions and improving patient experience and quality of life. Method Outpatient referrals to the UGI benign dietetic service between 02/02/2024 and 06/06/2024 were reviewed for source of referral, reason for dietetic referral and UGI diagnosis. Results Twenty-five new referrals were received from a variety of clinical specialities (table 1). The primary UGI disorders of referrals are outlined in table 2, with complex hernia repair being the most common. Table 3 outlines the broad range referral reasons. Nutrition support referrals were received for the following disorders: achalasia, oesophageal stricture and following oesophageal perforation, hiatus hernia repair, cholecystectomy and oesophagectomy. All weight management referrals were for complex hernia repair patients. Referrals for the side-effects of UGI surgery included dietetic support with pancreatic exocrine insufficiency (pancreatectomy; distal gastrectomy), dumping syndrome (hiatus hernia repair) and delayed gastric emptying (oesophagectomy). Conclusion The role of the benign UGI dietitian requires skills and expertise in a broad range of dietetic interventions. The service is well utilised by surgical and non-surgical colleagues. Next steps for service development would be to review the impact of interventions on surgical and patient reported outcomes, and explore feasibility of patient groups to deliver dietetic advice (for example weight reduction prior to surgery) to improve capacity within the service.

Exploring Informal Work: Gaining Legitimation through Nudging

This article develops a micro-level understanding of informal work (IW) by exploring the legitimising factors which business owners exercise to provide the rationale for engaging in IW. Using the lens of nudge theory, originating from behavioural economics, we show how IW becomes legitimised through nudging. Empirically, we explore the lived experience of service sector business owners who engage in IW practices in the East Midlands, UK. The findings uncover how the business owners’ context is shaped through exposure to various IW arrangements early in their working life; we also reveal a range of actors who actively shape these arrangements for embracing IW while delegitimising formal work. We present the factors that condition the beliefs and embed the understanding that IW is legitimate for the individual business owners, thus highlighting an important and emergent context for future studies in the realm of IW.

The Lived Experience of People With Intellectual Disability in Community Settings: A Comparison of Self‐Reports and Staff Reports

ABSTRACTBackgroundThere is a need for more qualitative research focusing on the lived experiences of people with an intellectual disability and a better understanding of how these experiences align with other voices in their lives, such as family and support staff.MethodsIn this qualitative study, we asked people with an intellectual disability (N = 87) and their support workers (N = 120) similar questions about factors contributing positively and negatively to the lives of those with an intellectual disability. We conducted a thematic analysis combining data across respondents, while also identifying areas of similarities and divergence between self‐reports and staff reports. The setting was community‐supported living schemes and group homes in the UK.FindingsQualitative themes, representing key positive and negative factors in the lives of people with an intellectual disability, were (1) Positive impact of social relationships on well‐being, (2) positive impact of participation and roles on self‐determination and well‐being and (3) negative impacts of difficulties affecting day‐to‐day life. These three themes are all linked to a broader sense of identity, purpose and self‐determination. These were broadly consistent across self‐reports and staff reports, although there were some points of divergence, particularly in Theme 3.ConclusionsThese findings reveal areas that are key to maximising the quality of life of people with an intellectual disability and suggest that self‐reports and proxy reports can sometimes offer unique perspectives. Our findings can be used to ensure that the priorities of people with an intellectual disability are considered in their care.

The Emotional Implications of a Hypertrophic Cardiomyopathy Diagnosis in a Retired Athlete: An Autoethnographic Approach

The purpose of this study was to advance knowledge and understanding of the emotional implications retired athletes experience when diagnosed with hypertrophic cardiomyopathy. This study employed an autoethnographic method to explore the consequences of living with this potentially life-threatening heart condition from a first-person narrative, using the account-making model of coping and loss as framework. The results illuminate the lived experience of someone diagnosed with hypertrophic cardiomyopathy and subsequent forced transition out of high-performance sport. This study provides practitioners with insights into this topic so that relevant and tailored interventions can be implemented to help retiring athletes who are diagnosed with hypertrophic cardiomyopathy cope with the career transition process. Notably, this paper also offers a full, complete autoethnography rather than extracts of autoethnographic writing typically provided in journal articles due to formatting restrictions. Thus, we showcase the valuable contribution this methodology has to offer scholars and practitioners.

Not Indian, Not African: Classifying the East African Asian Population in Aotearoa New Zealand

This paper explores the challenges of measuring and classifying the East African Asian population in Aotearoa New Zealand. As a particularly diverse country, New Zealand has a significant and varied population of immigrants from South Asia, including India, Pakistan and Bangladesh, along with immigrants of South Asian origin, from Fiji, Southeast Asia, the Caribbean and East Africa. New Zealand’s system of ethnic classification relies on self-identification, with a broad definition of ethnicity encompassing heritage, ancestry, culture, language and feelings of belonging. However, the collection of this information at a granularity that enables detailed analysis is constrained for the South Asian population, regardless of origin or identification. People are typically presented with the choice of selecting “Indian” ethnicity as a tick box, or providing ethnicities under “Other” as write-in descriptors, which in turn are coded to a limited set of categories within the classification being used. This practice potentially conceals a diversity of ethnicities, which can only partially be hinted at by responses to questions relating to religions, languages and birthplaces, especially for second or third-generation descendants of migrants. Ethnic classification at the highest level, moreover, includes East African Indians as Asian, rather than African, reflecting diasporic heritage as a shorthand for ancestry and overlooking the relevance of layers of identity associated with the double diaspora. Drawing on Peter J. Aspinall’s work on collective terminology in ethnic data collection and categorizing the “Asian” ethnic group in the UK, this paper looks at the overlaps and disconnects between heritage, ethnicity and national belonging in classifying less clearcut identities. We explore the strengths and limitations of New Zealand’s self-identification approach to ethnic identity, and query what exactly is being asked of groups on the margins: when self-identification does not match external perception, are we looking for geographic, cultural, or genetic origins? A focus on the East African Asian population in Aotearoa highlights the complexity of identity for diasporic groups with distant ancestral links with India, as lived experience of cultural connection extends far beyond the bounds of ethnicity, language and even ancestry.

Exploring the Relational Commitments of Negotiating Narrative Accounts in Narrative Inquiry

The purpose of this article is to discuss and make clear the methodological commitments of co-composing and negotiating narrative accounts in narrative inquiry. The negotiation of interim texts is a widely used practice across a range of methodologies and paradigms (i.e., member checking, member validation, member reflections, and narrative accounting), yet there is little discussion on the varied philosophical underpinnings that shape the meaning and purpose of negotiating interim texts with participants. By drawing on the authors experiences of negotiating narrative accounts across projects this article will clarify the relational commitments that underpin this aspect of narrative inquiry as a move toward mutuality, co-composition, friendship, and ongoing attentiveness ordinary lived experience.

«I have ants in my pants»: Metaphorical Framing in Female’s Conversational Narratives of Osteoporosis

Some changes that humans undergo in their bodies as they grow older are accompanied by a decline in health. Exclusively from the patients’ perspective, this paper is based on narratives of lived experiences related to osteoporosis, one chronic disease that usually develops unnoticedly as age increases and that is more frequent in females than in males. The general aim is to delve into the linguistic expressions used by women suffering from osteoporosis to talk about their condition. More specifically, the study focuses on the metaphors that patients use to describe or share their real insights and experiences with the disease and how these contribute to project an image of women themselves, on the one hand, but also to provide peers with further information and support, help them improve their lives and understand the inherent complex changes, symptoms and difficulties that they, their bodies and bones (may) experiment, on the other. To fulfil these purposes, a sample of conversational voluntarily produced narratives of women diagnosed with osteoporosis has been compiled, where metaphors have been identified and analysed following the cognitive metaphor theory. The results reveal an alternance of positive empowering and negative metaphors, where women face the suffering and complexities of the disease, but they present and see themselves as brave and empowered patients with dreams and non-stigmatised lives.

Examining suicidality in relation to the menopause: A systematic review

Suicide is one of the leading causes of deaths worldwide, with an estimated 1 in 100 deaths being attributable to suicide. Whilst rates of suicide are higher in men, evidence suggests that suicide attempts are more frequent in women. Suicidality data indicates that deaths by suicide in women are highest in those in midlife, warranting investigation into the relationship between the menopause and suicidality. The current study aimed to review the existing literature examining the relationship between suicidality and the menopause using a systematic review approach. A systematic literature search of MEDLINE, Cochrane Library, Scopus Web of Science, PsycINFO, and Embase databases was conducted in October 2023. Two authors independently screened the titles and abstracts of identified articles against the eligibility criteria. Any inconsistencies were discussed and resolved. This process was subsequently repeated with the articles’ full-text. Risk of bias was assessed using the Quality Assessment Tool for Studies with Diverse Designs (QATSDD). Relevant data were extracted and summarised in both a tabulated and narrative form. A total of 28 studies met the inclusion criteria, with the findings revealing a complex relationship between the menopause and suicidality. Several studies highlighted that the perimenopause period shows a higher prevalence of suicidal thoughts compared to pre-menopausal and post-menopausal stages. Conversely, some studies indicated increased suicidality during the post-menopausal phase, while others noted elevated suicidality in pre-menopausal individuals and those with primary ovarian insufficiency. Critically, several studies found no link between hormonal status and suicidality. The quality of the studies also varied, with a lack of involvement from individuals with relevant lived experience being a consistent methodological flaw across all the included studies. Overall, the current evidence on menopause and suicidality is mixed. Further research is needed to unravel the relationship between menopause and suicidality.

Peer support competency and mindfulness training and its effect on mental health: A pilot project

ABSTRACT Objective This pilot project aimed to evaluate the effectiveness of the college student athletes’ peer support competency and mindfulness training in relation to their peer support skills and overall well-being. Methods Seventeen college athletes participated in four 90-minute training sessions. The training structure consisted of lectures, facilitators’ demonstrations of skills, participants’ practice of the skills with each other, and participants’ reflections of the activity. A mixed method design using online surveys, and a focus group was employed to examine the effect of the training. Results There was a significant increase in participants’ peer support competency and well-being scores after completing the training sessions. Five overarching themes included shared lived experiences and connectedness, the scaffolding of experiences, practicing and transferring skills, increased attunement and awareness of self and others, and integrating insight and practice mindfulness. Discussion The structure in scaffolding the learning experience should be considered as strategies to master peer support skills, strengthen student-athletes awareness and mindfulness of their emotions and thoughts and increase their ability to handle stressful situations. Peer support and mindfulness training should be implemented and evaluated purposefully and properly to ensure its effectiveness.

Adults’ and children’s reasoning about the potential of diverse groups

IntroductionIn two experiments, we examine the degree to which adults (Experiment 1) and children 5-to-8-years-old (Experiment 2) use diversity to infer a group’s cooperative and innovative potential.MethodsParticipants heard a child-friendly vignette about a competition in which a homogenous and diverse group were competing to design the perfect toy. They were then probed using questions related to the group’s innovative potential and cooperative potential and asked to justify their responses.ResultsResults show that adults believed that the diverse group would produce the more innovative product, while children endorsed the homogenous group. When asked a question probing cooperation, adults selected the homogenous group, whereas children were equally likely to select either group. Analysis of adults’ explanations showed their explanations differed depending on which group they endorsed. However, children’s explanations did not show this nuance. Exploratory analyses suggest that participants’ responses were influenced by their personal experiences with gender and racial diversity.DiscussionPeople’s appreciation of the link between group diversity and group potential changes across the lifespan likely due to life experiences.

The World is the “Hometown” of the Camera: Interview with Jia Zhangke

Abstract In this interview, director Jia Zhangke shares the background and thought process behind his latest documentary Swimming Out Till the Sea Turns Blue (Yizhi Youdao Haishui Bianlan, 2021). Through the lens of rural literature, the film narrates 70 years of China’s social changes since 1949, featuring four writers – Jia Pingwa, Yu Hua, Liang Hong, and Duan Huifang, the daughter of Ma Feng – as the storytellers. The film explores the evolving relationship between urban and rural China and individual life experiences across different historical periods. Jia Zhangke emphasizes that the hometown is not only the starting point of creation but also a spiritual destination. He discusses the cultural value of dialects and traditional opera, highlighting that cinema should convey core Chinese stories through local narratives to preserve societal memory.

Do Therapeutic Recreation Mental Health Clinical Placements Provide Educational Experiences to Pre-Registration Student Nurses?: A Mixed Methods Systematic Review.

Clinical placements are a critical component in any pre-registration student nurse's skill development and play an influential role in career specialisation upon registration. However, students are reporting to feel anxious and under prepared attending clinical placements, especially within mental health settings. Such a concern was highlighted in the Australian Government's Productivity Commission into Mental Health (2020). With recommendations for clinical placements to occur in therapeutic recreation environments, allowing increased interactions between students and individuals with a lived experience. Hence, this mixed methods systematic review aims to explore the experiences of pre-registration student nurses completing their mental health clinical placement within a therapeutic recreation environment. Six databases were searched for the review; CINHAL, Medline, PsycINFO, Web of Science, Scopus and the ProQuest Dissertation and Theses database, yielding 10 214 articles. Data were imported to COVIDENCE for management and screening processes. Risk of bias was undertaken by two authors utilising the Joanna Briggs Institute's Critical Appraisal Checklist for qualitative and quasi-experimental studies and McGill's Mixed Methods Appraisal Tool 2018 Version for mixed methods studies. Data were extracted manually for the 13 included articles which met the review inclusion criteria. Following a thematic analysis of the extracted data, three themes emerged: an optimal learning environment, impact on stigmatising beliefs and influence on future career. Findings identified that therapeutic recreation environments pose numerous education benefits for pre-registration student nurses. It is apparent through an immersive mental health clinical placement; student nurses are able to increase their mental health understanding through the lens of those with lived experiences. Such environments challenge stigmatising beliefs held by students prior to clinical placements and can lead to an increased desire to pursue a career within the mental health speciality. This review offers an insight into the many benefits for pre-registration student nurses who complete their mental health clinical placements in therapeutic recreation environments, including reduced stigmatising beliefs, increased mental health knowledge and improved clinical confidence. Trial Registration: PROSPERO: CRD42023476280.

Driving a motor vehicle and living with a mental health condition: The personal and professional experiences of consumer lived experience staff.

Driving a motor vehicle is an important activity for people living with a mental health condition, as it can support engagement in the community as part of recovery. There is little research exploring mental health consumers' experiences with driving and no found research on the role of mental health lived experience staff in assisting consumers with safe driving. It is essential to learn about consumers' experiences of driving to know the supports they find useful in understanding their driver responsibilities and self-regulating their driving through periods of changing health and wellness. This study explored the personal and professional experiences of lived experience consumer staff related to driving a motor vehicle while also living with a mental health condition. The research was guided by the interpretive paradigm and codesign principles. Qualitative data were derived from semi-structured interviews with (n= 9) lived experience consumers working in a public mental health service. Data were thematically analysed. Our research team involved consumer and occupational therapy coresearchers. Five main themes were identified: (1) Driving means freedom and independence, (2) A nuanced understanding about the impact of mental health on driving, (3) I/we can manage: A range of strategies, (4) Driving is not something mental health staff tend to discuss, and (5) Do not beat around the bush, just talk about it. Consumers want support and direct conversations about driving and their mental health, medication side effects, and strategies to gain their licence, maintain, or return to driving. Alongside mental health clinicians, consumer lived experience staff could play a vital role in supporting safe driving.

Training, practice, and career considerations in forensic psychology: results from a field survey of clinical and non-clinical professionals in the United States

The current field survey describes the identities, training, practices, and careers of 351 U.S. forensic psychologists. Findings are presented for clinical forensic psychologists (n = 323) with additional consideration for those working in institutions (n = 119), private practice (n = 107), or both (n = 90), and separately for non-clinical forensic psychologists (n = 35). The sample was predominantly middle-aged, White, and female. Participants reported various training paths to the field, and professional settings and activities in the field. Student loan debt was common and significant in clinical Forensic psychologists. Income was generally high, with trends in higher incomes for private practice, board certification, urban areas, and certain geographic regions. Gendered income disparities were common, particularly among those later in their careers and in private practice, with relative parity only observed among early-career clinical forensic psychologists in institutions. Career satisfaction was generally high, with some important barriers noted. Overall, the limited representation of those with historically marginalized cultural identities restricted further consideration and understanding of these important factors in the field. Additional data and discussion are provided for these and other areas of demographics and lived experiences, training and related financial considerations, professional practices (including settings, activities, and clinical test use), and career considerations (including income, benefits, retirement planning, and satisfaction). Together, these data and related discussions offer important insights for prospective and current trainees entering the field, professionals seeking to navigate and advance their careers, and field leaders aiming to contribute to the ongoing development of forensic psychology.

The development of a dyadic family life review intervention for the Asian diaspora: A practice article.

Intergenerational family conflict is a commonly identified issue in the Asian diaspora; however, there are limited interventions designed to address this concern. Given this gap in the literature, the authors present a practice article outlining the conceptualization, development, and delivery of a dyadic life review intervention called (Re)Cultivating Family Stories (RFS). RFS is a clinician-facilitated family intervention designed to promote connection and foster successive communication through the joint activity of developing a family story. Life review is a structured approach for reminiscing and evaluating one's life experiences and includes dyadic variants. RFS builds on dyadic life review by facilitating collaborative dialogs between a parent and adult offspring, incorporating culturally responsive elements, and focusing on developing family stories. This article provides an overview of the intervention and its theoretical foundations, along with formative feedback from a field test. Considerations for future implementation and research directions are described.