High levels of Patient Self Advocacy may confound clinical research in understudied patient populations.

OBJECTIVE: To examine the levels of patient self-advocacy in a sample of participants with Chiari Malformation (CM) and to explore how they relate to clinical outcomes. METHODS: As part of a larger clinical trial addressing chronic pain in patients with CM, 111 participants completed the Patient Self Advocacy Scale (PSAS), the Depression, Anxiety, and Stress Scale (DASS-21), and the Brief Pain Inventory (BPI). RESULTS: PSAS scores indicated a moderately high level of patient self-advocacy (Mean = 3.86 SD = 0.50). The PSAS was not related to depression, anxiety, stress, pain intensity, or pain interference. There were no differences in PSAS according to surgical status (t(61.25) = 0.44, p = 0.66) or use of pain medication (t(109) = 1.05, p = .29). DISCUSSION: Participants in a clinical trial for CM have high levels of pre-existing patient self-advocacy. Research is needed to understand how patient self-advocacy contributes to the management of CM and how it could impact research of individuals with understudied conditions. CLINICAL TRIALS REGISTRATION: NCT05581472.

Psychological Capital, Self-Advocacy, and Future Orientation among Adults on the Autism Spectrum.

The paper offers an innovative exploration of the mediating role of psychological capital (PsyCap) in the relations between future orientation and self-advocacy among high-functioning adults on the autism spectrum. We posited that PsyCap, a composite of hope, self-efficacy, resilience, and optimism, serves as a crucial mediator of future orientation and self-advocacy. The sample comprised 40 high-functioning adults on the autism spectrum. Future orientation, self-advocacy, and PsyCap were significantly correlated among young adults with ASD. PsyCap was a mediator of the relations between future orientation and self-advocacy. The findings contribute to the understanding of psychological factors influencing self-advocacy and future orientation and have practical implications for interventions aimed at enhancing PsyCap to improve self-advocacy and future orientation in individuals with autism spectrum disorder.

Reclaiming Agency in Care Decisions and Barriers From the Perspectives of Individuals With Acquired Brain Injury and Their Family Members.

BACKGROUND: The ability to self-advocate or have a say in one's care is integral to personalised care after acquired brain injury (ABI). This study aimed to understand what constitutes self-advocacy and associated barriers and facilitators throughout hospital transitions and into the community. METHOD: Qualitative methodology was employed with semistructured interviews conducted with 12 people with ABI and 13 family members. Interviews were conducted at predischarge (in-person or via telephone) and 4 months postdischarge (via telephone) from the brain injury rehabilitation unit of a tertiary hospital. Data were thematically analysed using a hybrid deductive-inductive approach. RESULTS: Self-advocacy reflects the process of reclaiming agency or people's efforts to exert influence over care decisions after ABI. Agency varies along a continuum, often beginning with impaired processing of the self or environment (loss of agency) before individuals start to understand and question their care (emerging agency) and ultimately plan and direct their ongoing and future care (striving for agency). This process may vary across individuals and contexts. Barriers to self-advocacy for individuals with ABI include neurocognitive deficits that limit capacity and desire for control over decisions, unfamiliar and highly structured environments and lack of family support. Facilitators include neurocognitive recovery, growing desire to self-advocate and scaffolded support from family and clinicians. CONCLUSION: Self-advocacy after ABI entails a process of reclaiming agency whereby individuals seek to understand, question and direct their ongoing care. This is facilitated by neurocognitive recovery, growing capacity and desire and scaffolded supports. Research evaluating approaches for embedding self-advocacy skills early in brain injury rehabilitation is recommended. PATIENT OR PUBLIC CONTRIBUTION: Two caregivers with lived experience of supporting a family member with ABI were involved in the design and conduct of this study and contributed to and provided feedback on the manuscript.

Understanding Colorectal Cancer Patient Experiences with Family Practitioners in Canada.

Despite ongoing screening efforts, colorectal cancer (CRC) remains a leading cause of death in Canada. The aim of this study was to better understand the experiences of Canadian CRC patients with their family practitioners (FPs) during and after their CRC diagnosis. Patient-reported data were collected through an online questionnaire to understand their CRC diagnosis experiences and identify potential gaps in care. Various factors contributing to challenges throughout a patient's CRC diagnosis (e.g., delayed CRC diagnosis) were determined using descriptive, qualitative, and inferential analyses. These factors could be targeted to optimize CRC care. This study found that 40.6% of the 175 respondents were unaware of at least one of the following aspects of CRC prior to their diagnosis: early-age onset (EAO), symptoms, and screening procedures. While 84.6% had access to a family physician (FP) before their diagnosis, only 17.7% were diagnosed by FPs. Higher proportions of younger individuals experienced misdiagnoses and felt dismissed compared to older individuals. Only half felt fully informed about their diagnosis when it was explained to them by their FP, while 53.1% had their diagnosis explained in plain language. Transitioning towards patient-centred care would promote pre-diagnosis CRC awareness, address differences in management of CRC care (e.g., dismissal and support), and accommodate for age and health-literacy-related disparities, thereby improving CRC care pathways for patients. Future research should investigate FPs experiences in detecting CRC cases to develop educational resources and recommendations, enhancing early detection and improving patient outcomes (1).

A Qualitative Exploration of Self-Advocacy Experiences of Black Women in the Perinatal Period: Who Is Listening?

INTRODUCTION: Black women face poor maternal health outcomes including being over 3 times more likely to die from pregnancy complications than White women. Yet the lived experience of how these women self-advocate has not been clearly explored. The goal of this cross-sectional qualitative study was to describe the lived experiences of Black women advocating for their needs and priorities during the perinatal period. METHODS: Between January and October of 2022, we recruited Black women from obstetric clinics, research registries, and community advocacy groups who were either in their third trimester of pregnancy or within a year postpartum. Participants completed one-on-one interviews describing their experiences of self-advocacy. These data were analyzed using descriptive content analysis approaches that summarized women's experiences by iteratively creating major themes and subthemes that encapsulate their self-advocacy descriptions. RESULTS: Fifteen Black women completed interviews. Major themes and subthemes describing women's experience of self-advocacy were the following: (1) carrying a burden with subthemes of having to be good and easy, not trusting health care information and providers, and being dismissed; (2) building comfort with health care providers with subthemes of trusting I have a good provider, comfort in knowing they understand, and wanting low-touch, high-concern care; and (3) advocating for my child and myself when I need to with subthemes of going with the flow, becoming informed, pushing to ask questions, and balancing being proactive and pushy. DISCUSSION: Women reported self-advocating mainly due to experiences related to the burdens associated with not trusting providers and health care information. These findings provide clarity to how women carefully balance between ensuring their health is taken seriously while not jeopardizing their health or that of their newborn. This study offers promising directions to support Black women in advocating for their perinatal health care needs and values.

Inclusion in an Interdisciplinary Leadership Training Program: Perspectives From Self-Advocates.

Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs are interdisciplinary, graduate-level training programs that seek to promote improved outcomes for individuals with disabilities and their families. Many of these programs include individuals with disabilities as members of the self-advocacy discipline. In this study, 10 self-advocate trainees were interviewed to provide insight into the value of including self-advocates in training and the kinds of accommodations and supports that facilitated their success and inclusion. Interviewees endorsed the importance of including self-advocates in LEND programs. Although several accommodations were discussed as helpful, interpersonal supports from faculty and peers were equally important in ensuring their success and inclusion in LEND. The findings from this study provide support for the expansion of self-advocacy as a formal discipline in LEND programs.

"It's a learning curve throughout your entire life": Experiences and impact of FASD in adolescence explored in online photovoice research.

BACKGROUND: Research into the lived experience and disability of Fetal Alcohol Spectrum Disorder (FASD) is sparse in adolescence, despite its relevance to supports and life outcomes. AIMS: The study explored adolescents' lived experiences of FASD and access to support across home, school, and community. METHODS AND PROCEDURES: An online photovoice study was undertaken with eight young people (age 12-19, in education), integrating an Interpretative Phenomenological Analysis (IPA) approach. The research process comprised two individual interviews, group training, individual photo-taking, and group sessions for photo analysis/ dissemination. OUTCOMES AND RESULTS: Participant-led analysis of their photos identified how activities at home and in the community had functions of relaxation, sensory gratification, and enabled concentration. Researcher-led analysis found that young people identified with the disability of FASD through experiences at home and school. While they acknowledged the value of support and relationships, education was not always an inclusive experience. CONCLUSIONS AND IMPLICATIONS: Participatory online research allowed insight into the impact of FASD as a disability and underlines a consistent need for support in adolescence and the transition into adulthood. Young people with FASD require explicit support to develop their advocacy skills to improve educational outcomes.

A kaleidoscope of well-being to authentically represent the voices of children and young people with complex cerebral palsy: a case study series.

PURPOSE: This paper authentically represents the voices of non-verbal children with cerebral palsy using a case study design. Policy suggests that children should have the right to play and leisure opportunities, however non-verbal children with cerebral palsy have fewer choices. Additionally, children with communication, learning and mobility limitations are usually excluded from research. The aim of this research was to capture the voices of non-verbal children by exploring their well-being impact in terms of their experiences and choices about their level of participation in recreational activities. METHODS: A qualitative case series study included interviews, observations, photographs and diaries. Where possible, the diaries were completed by both caregivers and children. Data were analysed thematically, and the lens of positioning theory applied. RESULTS: Seven children aged nine to sixteen years participated. The findings showed how equipment, people and environments enabled or hindered the children's participation. The children also advocated as champions for their own well-being. Positioning theory was applied across the data and was adapted offering a way to better understand the children's well-being responses. CONCLUSION: The findings demonstrate how these children were able to self-advocate, demonstrating their well-being by their intentional behaviours from their level of participation in a recreational activity.

The voices of non-ambulant and non-verbal children are underrepresented in the literature. This study offers an innovative approach to highlight their voices using visual data. The images project the narrative about their choices for participation in recreational activities. The proposed kaleidoscope of well-being offers a way to demonstrate the fluctuations in their emotional responses from their participation.

4-2. Experiences of a Rehabilitation Medicine Physician Navigating Hearing Impairment / 医学教育

The amendment to the Medical Practitioners Act in March 2001 has significantly opened opportunities for individuals with visual and hearing impairments. Following this, there has been an increase in the number of physicians and medical students with hearing impairments; as of March 2024, the Japanese network of the Association of Deaf and Hearing Impaired Medical Students (ADHIMS) has 42 members.　As a physician with a hearing impairment, I aim to share my experiences transitioning from a medical student to a resident, to a specialist physician in rehabilitation medicine. I have used lip reading, hearing aids, and speech recognition for communication. As a medical student, I faced various challenges in becoming a physician, such as examinations for promotion, the Objective Structured Clinical Examination (OSCE), clinical clerkships, and so on. Thus, during my medical school years, not only was retention of knowledge crucial, but building relationships was equally important. As a resident, I found that effective communication with healthcare professionals became more accessible. Through consultation and information exchange within the ADHIMS, I have evolved into a physician specializing in rehabilitation medicine. Advances in low-technology aids and speech recognition have facilitated my work. I believe that communication skills, including self-advocacy and the ability to assess organizational and healthcare resources, are essential for physicians with hearing impairments to provide safe medical care.

Correlations between self-advocacy and symptom burden of breast cancer patients undergoing chemotherapy / 现代临床护理

Objective To investigate the status of self-advocacy and symptom burden in breast cancer patients undergoing chemotherapy and explore the correlations between them so as to provide a reference for relieving their symptom burden.Methods A total of 240 breast cancer patients undergoing chemotherapy who were treated in a general hospital in Hubei province from July 2021 to January 2022 were enrolled in the study by convenience sampling method.The general data questionnaire,female self-advocacy in cancer survivorship scale,and Chinese version of Anderson symptom assessment scale(MDASI)were applied in the investigation.Pearson correlation analysis was employed to explore the correlation between self-advocacy and symptom burden among breast cancer patients undergoing chemotherapy.Hierarchical regression was employed to analyze the effect of self-advocacy on symptom burden.Results A total of 240 patients completed the study.The total score of self-advocacy of the patients was(68.89±10.66),and the total score of symptom burden was(66.70±18.80).The two variables were significantly correlated in a negative way(r=-0.683,P<0.05).Hierarchical regression showed that self-advocacy ability independently explained 9.3%of the total variation in the symptom burden.Conclusions The incidences of various symptoms in breast cancer patients undergoing chemotherapy are high,and multiple symptoms coexist in the whole chemotherapy cycle.Symptom burden cannot be ignored,for it is negatively correlated with self-advocacy.Therefore,strengthening the concept and ability of self-advocacy can help reduce symptom burden of patients.

The experiences of students with intellectual and developmental disabilities, parents, and teachers regarding health self-advocacy program with school-home connection: a qualitative study.

Background: Despite the importance of health as a significant indicator of quality of life, individuals with intellectual and developmental disabilities (IDD) often face low expectations, stigma, and insufficient opportunities in health care and education. In response, we developed a health self-advocacy program with a school-home connection for students with IDD to promote self-directed health care and verified its effectiveness by implementing the program for students with IDD. Objective: This study aimed to explore participants' program experiences and support needs to reduce the stigma surrounding individuals with IDD and provide implications for enhancing health self-advocacy skills. Methods: Individual and focus group interviews were conducted with 14 students, six parents, and four teachers who participated in the program. The collected data were analyzed using the constant comparative method. Results: The following five main themes emerged: (a) the gap between perception and practice in health care; (b) advantages and influencing factors of the program; (c) challenges in program implementation; (d) outcomes of program implementation; and (e) support needs for promoting health self-advocacy. Conclusion: Based on these findings, implications are provided and discussed to reduce the stigma surrounding individuals with IDD and enhance health self-advocacy.

From Classroom to Boardroom: Self-Advocacy and Navigating the Transition for Students with Disabilities.

PURPOSE: This article evaluates the effectiveness of Career Services in supporting college students with disabilities to self-advocate for their accommodation rights during the job search. METHOD: A qualitative case study was conducted at one university to examine how their Career Services unit educates, trains, and supports students with disabilities in their professional development. Two rounds of interviews were conducted: one with university staff responsible for such services to assess policies and practices in providing support, and one with students and alumni with disabilities to gather feedback on their experiences with career planning and employment. RESULTS: Three key themes emerged from the data: (1) Disability stigma negatively impacts a willingness to self-advocate among participants (this is especially true among those belonging to multiple marginalized groups); (2) the lack of transition support by the university further entrenches this stigma; and (3) participants report subsequent challenges in the crossover to employment. CONCLUSION: These identified barriers discouraged participants from planning for and seeking workplace accommodations and highlighted the need for universities to provide more comprehensive support for their professional development.

Describing Self-Advocacy in Underrepresented Women With Advanced Cancer.

PURPOSE: To describe the self-advocacy experiences of women from underrepresented groups who have advanced breast or gynecologic cancer. PARTICIPANTS & SETTING: To be eligible for the study, participants had to self-identify as vulnerable, which was defined as a member of a group considered at risk for poor cancer outcomes and underrepresented in clinical research. METHODOLOGIC APPROACH: This descriptive, longitudinal, qualitative study consisted of one-on-one interviews of women within three months of an advanced breast or gynecologic cancer diagnosis. FINDINGS: 10 participants completed 25 interviews. The average age of participants was 60.2 years (range = 38-75 years). Three major themes emerged: (a) speaking up and speaking out, (b) interacting with the healthcare team, and (c) relying on support from others. IMPLICATIONS FOR NURSING: Women with advanced cancer who are from underrepresented groups self-advocated in unique ways, learning over time the importance of how to communicate their needs and manage their healthcare team. Future research should incorporate these findings into tailored self-advocacy interventions.

Neurodiversity, Networks, and Narratives: Exploring Intimacy and Expressive Freedom in the Time of Covid-19.

The Narratives of Neurodiversity Network (NNN) is a neurodivergent academic, creative, and educator collective that came together with allies during the Covid-19 pandemic to create a network centred around emerging narratives about neurodiversity and exploring new ways of learning and socialising. The network focuses on exploring the roles of written, spoken, and visual narratives across cultural locations about neuro-atypical experiences in generating improved agency and self-advocacy for those who have been subject to pathologization through neuro-normativity and intersecting oppression. During the last year, widening access to digital platforms has provided a space to explore these issues outside of traditional academic spaces. We run a monthly "Salon," our mixed-media "reading, listening, and watching" group, in an effort to find positive representation within contemporary culture. Discussions have moved beyond mimesis and into a consideration of how narrative and storyworlds can question the supposed naturalness of certain ways of being in and perceiving the world. This article interrogates the network's core principles of nonhierarchical co-production, including the roles of creativity, community, identity, and emancipatory research which were animated by the new techno-social context. We consider the cultural lives of neurodiversity in the West and beyond, including ethical and aesthetic dimensions. We share a faith in the power of storytelling to inform new social identities for neurodivergent people and to inform scientific understandings of atypical cognition. In exploring this, we speak through a porous first-person plural narrator, to unsettle the idea that there is a hegemonic "we" speaking on behalf of all neurodivergent people.

AACP faculty affairs standing committee report of strategies for faculty self-advocacy and promotion.

OBJECTIVES: The 2020-2021 American Association of Colleges of Pharmacy Faculty Affairs Standing Committee (FASC) was charged with identifying how faculty can self-advocate and promote themselves in a social influence context. FINDINGS: The FASC identified social influence and persuasion theories and strategies that can be used by faculty to initiate self-advocacy discussions and collaborations. Social influence and persuasion theories can provide a framework for research and scholarship or for beginning discussions regarding self-advocacy. SUMMARY: This FASC report describes the Committee charge, background information, and an overview of social influence theories and how these theories can be applied in academic pharmacy. The report concludes with a summary of issues for follow-up to the Committee's work.

The feasibility, acceptability, and preliminary efficacy of a self-advocacy serious game for women with advanced breast or gynecologic cancer.

BACKGROUND: Cancer clinicians and systems aim to provide patient-centered care, but not all patients have the self-advocacy skills necessary to ensure their care reflects their needs and priorities. This study examines the feasibility, acceptability, and preliminary efficacy of a self-advocacy serious game (an educational video game) intervention in women with advanced breast or gynecologic cancer. METHODS: Women with recently diagnosed (<3 months) metastatic breast or advanced gynecologic cancer were randomized 2:1 to receive a tablet-based serious game (Strong Together) (n = 52) or enhanced care as usual (n = 26). Feasibility was based on recruitment, retention, data completion, and intervention engagement. Acceptability was assessed via a postintervention questionnaire and exit interview. Preliminary efficacy was assessed on the basis of change scores from baseline to 3 and 6 months in self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale) using intention-to-treat analysis. RESULTS: Seventy-eight women (55.1% with breast cancer; 44.9% with gynecologic cancer) were enrolled. Feasibility was demonstrated by satisfactory recruitment (69% approach-to-consent rate; 93% enroll-to-randomize rate), retention (90% and 86% at 3 and 6 months, respectively; 85% data completion), and intervention engagement (84% completed ≥75% of the game). Participants endorsed the intervention's (75%) and trial's (87%) acceptability. Participants in the intervention group experienced significant improvements in self-advocacy at 3 and 6 months compared to participants in the control group. CONCLUSIONS: Strong Together is feasible and acceptable among women with advanced breast or gynecologic cancer. This intervention demonstrates promising evidence of clinical efficacy. A future confirmatory trial is warranted to test the efficacy of the intervention for patient and health system outcomes.

An exemplary model of genetic counselling for highly specialised services.

With genomic testing being increasingly integrated into every day clinical practice and a wide range of practitioners ordering genetic tests, it is important that the scope of the genetic counselling role continues to evolve alongside these changes. We present an exemplary role for genetic counsellors in a highly specialised service within England's National Health Service for people who have or are suspected to have rare genetic types of Ehlers Danlos syndrome. The service employs genetic counsellors and consultants from the fields of genetics and dermatology. The service also works closely with other specialists and related charities and patient organisations. The genetic counsellors in the service provide routine genetic counselling such as diagnostic and predictive testing, but their role also includes the writing of patient literature and emergency and well-being resources, delivering workshops and talks, and the development of qualitative and quantitative research on the patient experience. Data from such research has informed the development of patient self-advocacy and supportive resources, raised awareness amongst healthcare professionals and enhanced the standard of care and outcomes for patients. The service aims to be an example of innovation and accessibility and provides a model that can be potentially adopted by other highly specialised services of rare genetic diseases.

Short report: Autistic adults' recommendations on how to improve autistic portrayals in TV-series and movies.

BACKGROUND: TV-series and movies are important sources of knowledge about autism for the general public. AIMS: This study's purpose was to elicit autistic adults' opinions on portrayals of autistic characters in film and television productions and how this can be improved. METHODS AND PROCEDURE: In this study, we examined the recommendations of autistic adults (n = 798, Mage = 30.3, 48% female) and non-autistic adults (n = 1463, Mage = 35.0, 62% female) from 90 countries on how film and television productions can improve autistic portrayals. OUTCOMES AND RESULTS: Autistic adults rated three improvement factors as most important: (1) Appointing autistic writers, (2) Having an autistic consultant, and (3) Representing greater diversity in autistic characters. Compared to the non-autistic groups, autistic adults rated "Appointing autistic writers" as more important. Autistic participants also endorsed "Having an autism-expert consultant" and "Making the character display all relevant diagnostic criteria" significantly less than non-autistic groups. CONCLUSIONS AND IMPLICATIONS: Participants strongly endorsed that autistic adults should to a much larger extent be included as writers, consultants and actors to enhance the making of autistic characters in film and TV.

Is self-advocacy universally achievable for patients? The experiences of Australian women with cardiac disease in pregnancy and postpartum.

PURPOSE: Patient self-advocacy is valued and promoted; however, it may not be readily accessible to all. This analysis examines the experiences of women in Australia who had cardiac disease in pregnancy or the first year postpartum through the lenses of self-advocacy and gender, specifically seeking to elaborate on the contexts, impacts, barriers, and women's responses to the barriers to self-advocacy. METHOD: A qualitative study design was used. Twenty-five women participated in semi-structured in-depth interviews. Data were analysed using thematic analysis. RESULTS: Analysis of findings generated the following themes: 1) Silent dream scream, 2) Easier said than done, 3) Crazy-making, and 4) Concentric circles of advocacy. Regardless of women's personal attributes, knowledge and experience, self-advocating for their health was complex and difficult and had negative cardiac and psychological outcomes. CONCLUSION: While the women encountered significant barriers to self-advocating, they were resilient and ultimately developed strategies to be heard and to advocate on their own behalf and that of other women. Findings can be used to identify ways to support women to self-advocate and to provide adequately resourced and culturally safe environments to enable healthcare professionals to provide person-centred care.