L'oncogénétique, l'étude des prédispositions héréditaires au cancer, constitue une discipline médicale dynamique, faisant l'objet de nombreuses innovations, tant technologiques que thérapeutiques. Les progrès scientifiques en oncogénétique rendent le recours aux tests génétiques à la fois moins coûteux, plus rapide et plus efficace, ce qui soulève ou réactualise paradoxalement de nombreux enjeux éthiques et psychosociaux tels que la capacité des patients à formuler un consentement éclairé ou le risque de dérives liées à des mésusages des tests génétiques. Face à ces changements, nous avons choisi d’explorer la façon dont est mobilisée l'expérience vécue ou projetée dans la mise en sens des enjeux éthiques et psychosociaux liés aux innovations technologiques et thérapeutiques en oncogénétique. Ce travail de recherche, résolument ancré en psychologie sociale, s'inscrit dans une approche critique des questions de santé où sont interrogés à la fois les besoins, attentes et contraintes des professionnels et usagers du système de soins, et les relations de pouvoir qui s'exercent tant au niveau interindividuel qu'au niveau plus large des politiques de santé. C'est grâce à la notion d'expérience vécue ou projetée que nous avons cherché à comprendre la façon dont les individus font sens de leur monde, et plus particulièrement des évolutions qui touchent l'oncogénétique. L'expérience, nécessairement sociale et socialement construite, est multidimensionnelle, nous proposons d'investiguer plus particulièrement trois de ces dimensions : - une dimension pratique centrée sur l’étude des relations soignants-patients, - une dimension de connaissances étudiée au travers de la négociation des connaissancesexpertes et du savoir de sens commun grâce à la théorie des représentations sociales, - et enfin une dimension émotionnelle envisagée sous l'angle des phénomènes de partage social des émotions et de régulation émotionnelle.Afin de répondre à ces objectifs, deux études complémentaires reposant sur des méthodologies qualitatives ont été mises en place dans une perspective de triangulation des données. La première étude a visé à investiguer la mise en sens des pratiques professionnelles ainsi que la façon dont les soignants se projettent dans un champ disciplinaire en pleine transition et dans leurs pratiques futures. Nous avons mené des entretiens semi-directifs auprès de 27 professionnels en oncogénétique (oncogénéticiens et conseillers en génétique). Les données recueillies ont fait l'objet d'une analyse interprétative phénoménologique (IPA) adaptée à un large échantillon sur les données recueillies, en nous appuyant sur le logiciel d'aide à l'analyse N-Vivo. La seconde étude avait pour objectif d'explorer la co-construction des représentations liées aux nouveaux usages de l'oncogénétique, ainsi que d'étudier l'impact de la l'expérience vécue sur la compréhension des enjeux éthiques liés àl'oncogénétique. Dix focus groups, reposant principalement sur la résolution de dilemmes éthiques, ont été réalisés auprès de 18 femmes ayant l'expérience d'au moins une consultation en oncogénétique et 21 femmes n'ayant pas d'expérience similaire, toutes recrutées par le biais de la plateforme Les Seintinelles, qui constitue une communauté d'intérêt autour du cancer. Une analyse inspirée de l'IPA a été réalisée sur les données ainsi recueillies avec appui sur le logiciel N-Vivo.Notre recherche a permis de souligner le caractère résolument social de la recherche de prédispositions génétiques en oncologie. L’oncogénétique est définie socialement autour de deux de ces objectifs : permettre de mettre en place des mesures de prévention destinées aux individus porteurs d’une mutation génétique, et donner une explication à une histoire familiale de cancer..... / Genetic testing for cancer, which aims to identify hereditary predispositions to cancer, is a dynamic medical field, where many technological and therapeutic innovations emerge. Scientific progress allows genetic testing to be both less expensive, faster and more efficient, which paradoxically raises new ethical and psychosocial issues, such as the patient’s ability to give informedconsent, or the risk of misuses of genetic testing. These changes led us to explore how lived experience is mobilized in the process of making sense of the ethical and psychosocial issues related to innovations in the field of genetic testing of cancer. This research, anchored in social psychology, is based on a critical approach of health issues, which questions the needs, expectations and constraints of health professionals and patients, and the power relationships that take place both at the interindividual level and, on a larger scale, within health policies. Based on the theoretical notion of lived experience, we aimed to understand how individuals make sense of their world, and more particularly of innovations in the field of genetic testing. Lived experience, necessarily social and socially constructed, has many dimensions, among which we chose to investigate the following three: - A practical dimension, based on the study of doctor patient-relationship, - A knowledge dimension, investigated through the negotiation of expert knowledge and common sense thanks to the social representations theory, - And an emotional dimension, based on the study of the phenomena of emotion regulation and social sharing of emotions.Based on the principles of methodological and data triangulation, our exploration was based on two complementary qualitative studies. The first study aimed to investigate sense making processes related to professional activities and how health professionals working in genetic testing for cancer imagine their future and the future of genetic testing. We led 27 semi-structured interviews with genetic counsellors and clinical geneticists. An Interpretative Phenomenological Analysis (IPA) was performed analyze the data gathered, with the assistance of N-Vivo software. The second study aimed to explore the co-construction of representations related to new uses to genetic testing of cancer, and to investigate the impact of lived experience on the understanding of ethical issues related to genetic testing. We led ten focus groups, based mostly on the resolution of ethical dilemmas, with 18 women who attended at least one genetic counselling consultation, and 21 women who did not have a similar experience. All women were recruited thanks to the online collaborative research platform “Les Seintinelles”, which constitutes a cancer related community of interest.This research allowed us to highlight the social nature of genetic testing of cancer. This medical field is defined by two main goals: allowing carriers of genetic predisposition to undergo preventive measures, and making sense of a family history of cancer. Genetic counselling professionals report a high level of personal involvement in their work and emotion regulation strategies acquired on purpose and based on a strict division between their personal and professional life. The acknowledgement oftheir professional skills and the perceived quality of their relationships with their patients contribute highly to the work-related satisfaction of genetic testing professionals. The doctor-patient relationship is structured by an ideal of non-directivity, which can be questioned by the need to accompany and protect the patients, who are considered as vulnerable. Because of the risks of misuses of genetic testing, the strict legislation related to these practices in France is most often considered as valuable.Clinical geneticists and genetic counsellors are considered the most likely to provide genetic testing within an ethical framework.

Grâce à l’évolution de la technologie à travers le Web, la documentation relative à la santé est de plus en plus abondante et accessible à tous, plus particulièrement aux patients, qui ont ainsi accès à une panoplie d’informations sanitaires. Malheureusement, la grande disponibilité de l’information médicale ne garantit pas sa bonne compréhension par le public visé, en l’occurrence les non-experts. Notre projet de thèse a pour objectif la création d’une ressource de simplification de textes médicaux, à partir d’une analyse syntaxico-sémantique des verbes dans quatre corpus médicaux en français qui se distinguent de par le degré d’expertise de leurs auteurs et celui des publics cibles. La ressource conçue contient 230 patrons syntaxicosémantiques des verbes (appelés pss), alignés avec leurs équivalents non spécialisés. La méthode semi-automatique d’analyse des verbes appliquée pour atteindre notre objectif est basée sur quatre tâches fondamentales : l’annotation syntaxique des corpus, réalisée grâce à l’analyseur syntaxique Cordial (Laurent, Dominique et al, 2009) ; l’annotation sémantique des arguments des verbes, à partir des catégories sémantiques de la version française de la terminologie médicale Snomed Internationale (Côté, 1996) ; l’acquisition des patrons syntactico-sémantiqueset l’analyse contrastive du fonctionnement des verbes dans les différents corpus. Les patrons syntaxico-sémantiques des verbes acquis au terme de ce processus subissent une évaluation (par trois équipes d’experts en médecine) qui débouche sur la sélection des candidats constituant la nomenclature de la ressource de simplification. Les pss sont ensuite alignés avec leurs correspondants non spécialisés, cet alignement débouche sur le création de la ressource de simplification, qui représente le résultat principal de notre travail de thèse. Une évaluation du rendement du contenu de la ressource a été effectuée avec deux groupes d’évaluateurs : des linguistes et des non-linguistes. Les résultats montrent que la simplification des pss permet de faciliter la compréhension du sens du verbe en emploi spécialisé, surtout lorsque un certains paramètres sont réunis. / With the evolution of Web technology, healthcare documentation is becoming increasinglyabundant and accessible to all, especially to patients, who have access to a large amount ofhealth information. Unfortunately, the ease of access to medical information does not guaranteeits correct understanding by the intended audience, in this case non-experts. Our PhD work aimsat creating a resource for the simplification of medical texts, based on a syntactico-semanticanalysis of verbs in four French medical corpora, that are distinguished according to the levelof expertise of their authors and that of the target audiences. The resource created in thepresent thesis contains 230 syntactico-semantic patterns of verbs (called pss), aligned withtheir non-specialized equivalents. The semi-automatic method applied, for the analysis of verbs,in order to achieve our goal is based on four fundamental tasks : the syntactic annotation of thecorpora, carried out thanks to the Cordial parser (Laurent et al., 2009) ; the semantic annotationof verb arguments, based on semantic categories of the French version of a medical terminologyknown as Snomed International (Côté, 1996) ; the acquisition of syntactico-semantic patternsof verbs and the contrastive analysis of the verbs behaviors in the different corpora. Thepss, acquired at the end of this process, undergo an evaluation (by three teams of medicalexperts) which leads to the selection of candidates constituting the nomenclature of our textsimplification resource. These pss are then aligned with their non-specialized equivalents, thisalignment leads to the creation of the simplification resource, which is the main result of ourPhD study. The content of the resource was evaluated by two groups of people : linguists andnon-linguists. The results show that the simplification of pss makes it easier for non-expertsto understand the meaning of verbs used in a specialized way, especially when a certain set ofparameters is collected.

Embora sejam grandes os progressos com a promulgação da Constituição de 1988, que garante constitucionalmente a saúde como direito de todos e dever do Estado, esse direito não tem sido assegurado no mesmo nível e com a mesma qualidade de atenção, em especial, para a população negra. Depois de uma revisão sobre a história a influência das teorias racialistas e de gênero como categoria de análise na medicina, discute-se uma síntese da história recente das práticas médicas no Brasil e a reflexão critica sobre essas práticas centradas no tecnicismo. O objetivo deste estudo, parte da linha de pesquisa Pesquisa Psicossocial da Desigualdade: Relações Étnico-raciais, foi descrever que sentidos e significados médicos e médicas conferem aos temas médico-sociais na sua trajetória e formação, especialmente como concebem os determinantes sociais de gênero e raça Foram entrevistados 25 médicos (13 médicos e 12 médicas) que orientam e são preceptores de alunos da residência médica em um hospital universitário. O roteiro abordava o perfil sócio-demográfico e sua trajetória profissional; o seu nível de conhecimento e contato com os determinantes sociais (pobreza, gênero, cor/raça, nacionalidade, religião dos diferentes grupos populacionais) durante a formação acadêmica; que fatores consideravam relevantes para uma boa relação médico-paciente; seu conhecimento sobre Direitos Humanos e os princípios do Sistema Único de Saúde; as experiências na relação médico-paciente e de cuidado. Depois de um aquecimento propiciado pela situação da entrevista, entre os resultados, o estudo permitiu observar como os médicos entrevistados reconhecem alguns marcadores sociais da diferença que se transformam em desigualdade, os lugares sociais diferentes para homens e mulheres, brancos, amarelos e negros, lugares de maior ou menor privilégio e de obstáculo para o sucesso técnico. As diferenças e desigualdade de gênero foram mais fáceis de serem explicitadas e os entrevistados articulavam um repertório levemente maior para o tema. Todos os entrevistados, em algum momento, usaram o discurso sobre o instintivo e natural, e a maior parte deles compreende o masculino e o feminino de um modo muito conservador, com problemas para encontrar definições para perguntas supostamente simples. No caso da desigualdade racial, observamos que houve uma polarização: de um lado a negação das desigualdades entre brancos e não brancos, do outro temos a valorização da identidade branca, compondo bem com o racismo à brasileira. O contexto social foi associado à pobreza mais que qualquer outro indicador da desigualdade social. Cenas de racismo e sexismo institucional foram frequentes. Os poucos entrevistados que tinham uma noção mais sofisticada sobre gênero e raça eram aqueles que contaram com a oportunidade de desenvolver uma atividade de extensão, a iniciação científica ou que tiveram uma formação mais generalista, mais social. A trajetória trilhada na faculdade contribui, portanto, para a formação / Brazil\'s 1988 Constitution grants health as a human right to all and a duty of the State. Although great progress has been made since its enactment, this right has not been ensured at the same level and with the same service quality, particularly with regard to Afro-Brazilians. With close attention to history and the influence of racial and gendered theories, this article discusses the recent history of medical practices in Brazil and provides critical reflection on those practices that are centered on technique. The main purpose of this study, a part of the Psycho-social research on inequality: ethnic-racial relations research line, is to describe the meanings and significance that doctors give to medical social issues in their education. Special attention is given to their conception of the social determinants of gender and race. Twenty-five doctors (13 men and 12 women) were interviewed. All of them mentor medical students pursuing their residency at a University Hospital. The interviews script centered on their socio-demographic profile, their professional path and the degree of knowledge or contact with social determinants (poverty, gender, race/color, nationality, religion of the different population groups) during their academic formation, the factors they considered as relevant to a good doctor-patient relationship, their knowledge of Human Rights and the principles of the Sistema Único de Saúde (SUS) and their experiences in the care and doctor-patient relationships. Among its results, the study shows how the interviewed doctors recognize several social markers of difference that convert into inequity, the different social places for men and women, the white, the people of Asian descent and the black, places of greater or lower privilege and obstacle for technical success. The gender differences and inequalities were more easily explained and respondents articulated a slightly larger repertoire for the topic. All of the interviewees, at some moment, used the discourse on the instinctive and the natural, and most of them have a very conservative comprehension of the feminine and the masculine, and encountered problems in finding definitions for apparently simple questions. With regards to racial inequality, there was a polarization: on the one hand, the denial of inequalities among the white and the non white, on the other, a consistent evaluation of white identity, linked to the Brazilian racism. The social context was associated with poverty rather than any other indicator of social inequality. Evidence of racism and sexism were frequently observed in the interviews. The few interviewees that had a more sophisticated notion of gender and race were those who had had the chance to develop an extracurricular activity, the scientific initiation, or those who had had a more generalist and social education. Thus, the experience acquired during university contributes to the formation of their notions of social determinants in health

Submitted by Rosina Valeria Lanzellotti Mattiussi Teixeira (rosina.teixeira@unisantos.br) on 2017-08-23T14:21:14Z No. of bitstreams: 1 Maria Aparecida Pedrosa dos Santos.pdf: 1808232 bytes, checksum: 9e374f7b8e348ba9f488e574e1da67d2 (MD5) / Made available in DSpace on 2017-08-23T14:21:14Z (GMT). No. of bitstreams: 1 Maria Aparecida Pedrosa dos Santos.pdf: 1808232 bytes, checksum: 9e374f7b8e348ba9f488e574e1da67d2 (MD5) Previous issue date: 2017-06-22 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / This is a case study with a qualitative approach, whose phenomenon is the participation of two (02) programs, the Program of Valorization of the Professional of Basic Attention (PROVAB) and the More Doctors Program (MDP) as Public Health Policies (PHP) focused on medical training for the Primary Health Care (PHC), starting from a ¿paulista¿ context. It aims to analyze the experience and understandings of physicians, management professionals, and Resident Medical (RM) participants about PROVAB and MDP, and to identify the effectiveness of these programs as policy tools for medical training. PROVAB was implemented in 2012 and the MDP in 2013, being the most recent devices for the provision and medical training for the PHC in Brazil, considered the gateway to SUS. Data were collected through semi-structured recorded interviews being later transcribed and applied to 31 key informants (physicians, management professionals, and Medical Residents) involved with PROVAB and MDP, PHC and Medical Education. To provide theoretical support, the databases obtained in consultation with the VHL through LILACS, SCIELO and MEDLINE, as well as books, journalistic informations and theses, among others, were used as a bibliographic research resource. It is worth noting that despite the MDP being implemented in 2013, PROVAB had not been extinguished, and both Programs coexisted in parallel until the beginning of 2015, when the Ministry of Health joined PROVAB to MDP, so that the form of access from here on has become the same. However, the physician with professional registration in Brazil can choose whether or not to obtain the additional 10% points of the RM test if he or she stays for a period of one year working in the family health strategy (FHS) in regions prioritized by the MDP. For the analysis of the data the techniques of Bardin Content Analysis and Data Based Theory were used demonstrating with the messages of the subjects that the implementation of these programs enables the improvement of PHC, and is currently the PHP that understands and favors the medical training directed to work in this primary level of health. / Trata-se de um estudo de caso com abordagem qualitativa, cujo fenômeno é a participação de dois (02) programas, o Programa de Valorização do Profissional da Atenção Básica (PROVAB) e o Programa Mais Médicos (PMM) como Políticas Públicas de Saúde (PPS) voltadas à formação médica para a Assistência Primária da Saúde (APS), a partir de um contexto paulista. Tem como objetivo analisar a experiência e entendimentos de médicos, profissionais de gestão, e participantes de Residência Médica (RM) sobre o PROVAB e PMM, e identificar a efetividade desses programas como ferramentas de políticas de formação médica. O PROVAB foi implantado em 2012 e o PMM em 2013, sendo os mais recentes dispositivos destinados ao provimento e formação médica para a APS no Brasil, considerada a porta de entrada para o SUS. A coleta dos dados foi realizada através de entrevistas semiestruturadas gravadas e posteriormente transcritas, aplicadas a 32 informantes chaves (médicos, profissionais da gestão, e integrantes de RM) envolvidos com o PROVAB e PMMB, APS e Educação Médica. Para dar sustentação teórica, as bases de dados obtidas em consulta na BVS através do LILACS, SCIELO e MEDLINE, além de livros, informações jornalísticas e teses dentre outras, foram utilizadas como recurso de pesquisa bibliográfica. Vale observar que, apesar do PMM ter sido implantado em 2013, o PROVAB não havia sido extinto, e ambos os Programas coexistiram paralelamente até o princípio do ano de 2015, quando o Ministério da Saúde, integrou o PROVAB ao PMM, de modo que a forma de entrada a partir dai tornou-se única, mas o médico com registro profissional no Brasil pode optar se quer ou não obter a pontuação adicional de 10% da prova de RM, caso permaneça por um período de um ano atuando na ESF nas regiões prioritárias definidas pelo PMM. Para a análise dos dados foram utilizadas as técnicas de Análise do Conteúdo de Bardin e Teoria Fundamentada nos Dados, demonstrando com as mensagens dos sujeitos que a implementação desses programas viabiliza a melhoria da APS, e atualmente é a PPS que entende e favorece a formação médica direcionada para atuar nesse nível primário de saúde.

This study examined the effect of a visual arts, family-focused school readiness intervention on the parental efficacy and level of family involvement of low-income families. A second, primary focus of the study was to test the potential of academically focused experiences in the visual arts to increase the basic concept development of young children. To increase accessibility, the intervention was conducted in a neighborhood library. The research design for this descriptive study included qualitative and quantitative components. Data collection consisted of a non-randomized one group pre-test/posttest design from students on a standardized instrument and from primary caregivers using self-report questionnaires. Other data collection sources included field notes documenting observations made during implementation collected by the investigator, parent home engagement data in the form of a weekly survey filled out by adult participants and weekly phone calls monitoring any issues or questions regarding the completion of take-home activities. The results of this relatively small sample using the visual arts to build basic concept knowledge indicate that, given a larger sample, this approach may prove to be a promising strategy to use with young children and their families. The average raw score gain on the student basic concept scale was 8 points at the end of the seven-week intervention. The parent surveys indicated that almost all books sent home were read each week and an average of three home learning activities per book were completed between sessions. The majority of parents commented at least once on the At-Home Surveys about increases in positive interaction with their children while engaged in the home learning activities. Enhancing the parent-child relationship begins with the sharing of positive experiences. Comments made by adult participants indicated that parents felt empowered to better support their child's learning by participating in this experience.

The purpose of this study was to assess the effects of participation in a family coaching program on perceptions of parental self-efficacy, families' use of encouragement, and reinforcement behaviors. A second purpose of the study was to ascertain the lasting effect on families participating in a family involvement intervention that included coaching. Families with prekindergarten and/or kindergarten children attending school in a low-income neighborhood and neighboring child care centers were recruited for the study. The Family Coaching Institute, the family involvement intervention for this study, consisted of three 5-week, 2-hour biweekly sessions. Attendance ranged from 3 to 15 sessions. Child care, dinner, learning activities, materials, books and supplies were provided. Participants were encouraged to use the activities at home with their children between sessions. Pre-intervention and post-intervention interviews were conducted with the participants using scales designed to measure parental self-efficacy, encouragement, and reinforcement behaviors. Family members also participated in a focus group and completed the Family Involvement Learning Survey 6 months after the intervention. Results of the study indicated there were no statistically significant differences in responses from the beginning to the end of the intervention on the scales designed to measure parental self-efficacy, encouragement, and reinforcement behaviors. These findings are discussed in the context of a response shift bias. In contrast, ratings on the Family Involvement Learning Survey indicated participation in the intervention had a strong impact on family behaviors.

Conjunctivitis is the most common cause of red eye and one of the most frequent causes of visits to clinicians. There is significant controversy on the diagnosis and treatment of the disease and the use of ophthalmic antibiotics. The inconvenience of the untimely diagnostic tests led to the trend of treating conjunctivitis empirically with ophthalmic antibiotics. Subsequently, the diagnosis of bacterial conjunctivitis is higher than it should be resulting in overuse of antibiotics. Consequences of inappropriate diagnosis and treatment include increased virulence, increased health care costs, and incorrect use of antibiotics leading to possible adverse reaction and antibiotic resistance. Appropriate diagnosis and treatment will assist to reduce the diagnosis of bacterial conjunctivitis and use of ophthalmic antibiotics resulting in reduced virulence and reduced health care costs. The AdenoPlus test has been shown to be effective in appropriately diagnosing viral conjunctivitis and subsequently decreasing the use of ophthalmic antibiotics however this evidence in limited. A national retail clinic has adopted the use of this tool to assist with proper diagnosis and treatment of viral conjunctivitis. Data has not yet been analyzed to determine if the implementation of this test changes the practice of clinicians at the national retail clinic.

The field of student affairs administration could benefit from research on how student affairs administrators perceive their duties, responsibilities, and obligations, as well as how such an understanding could contribute to organizational theory, practice, and policy. The purpose of this study was to examine how administrators in student affairs perceive their role in public higher education institutions in the United States. This study examined SAAs’ duties, obligations, and responsibilities (role) using Q methodology. Although there are perception studies using Q methodology in higher education, there are fewer empirical studies on how SAAs’ perceive their roles. Consequently, this study recruited forty professionals in student affairs from 12 public institutions of higher education. On a continuum from “least important” (-4) to “most important” (+4), they sorted 37 statements that represented their views on SAAs’ duties and responsibilities. The 40 sorts were then factor analyzed with PQMethod 2.33 a, freeware program. Four factors emerged that represent distinct viewpoints on the role of student affairs administrators in public tertiary institutions—Connective Leadership, Instructive Leadership, Supportive Leadership, and Constructive Leadership. These four factors—details of which are presented in the study—indicate that student affairs administrators view their roles through four different leadership lenses, but that each lens is modulated or modified by four major theories—self-perception theory, organizational role theory, and, more importantly, student development theory.

.......................................................................................................................................... 2 Abstract The number of students with autism spectrum disorders (ASD) attending postsecondary education has steadily increased in recent years. A need has been identified for campus administrators to better understand the needs of students with ASD (Becker & Palladino, 2016; Oswald, Winder-Patel, Ruder, Xing, Stahmer, & Solomon, 2017). In order to gain insight about students with ASD, research providing a foundation of understanding the unique characteristics and needs of this growing population must take place. By recognizing the need for further education and training, campus administrators may have opportunities to develop professional development trainings that could provide insight into understanding a growing population of students and their needs (Zeedyk, Tipton, & Blacher, 2016). The purpose of this study was to explore the knowledge of self-determination within college students with ASD. Quantitative methodology was selected in order to provide an exploratory approach to provide a foundation of understanding of self-determination skills for students with ASD. This study included 53 students with ASD registered with the Disability Services Offices (DSO) attending university as well as 41 students registered with the campus DSO without a diagnosis of ASD. A modified version of the American Institute of Research (AIR) was used to measure self-determination skills with the two participant groups. Three major findings were identified from this study. Students with ASD scored much lower than students without ASD on the open-ended response portion of the survey. However, students with ASD scored higher than students without ASD in identifying resources on campus. Finally, students with ASD identified mentors as primary resources of support on campus. The findings from this study confirms more data are needed in order for campus administrators to better understand the needs of a growing population of students. Future research could include topics of professional development for campus faculty and staff, strategic instruction on self-determination skills for students with ASD, and the impact of self-determined leadership in higher education. Key words: autism spectrum disorders, self-determination, postsecondary education

The present study posed two research questions. Because of limited research regarding leadership in arts and culture organizations, the background question to contextualize the study was: How do nonprofit arts and culture leaders in the Jacksonville, Florida, metropolitan area perceive their roles within their organizations? The foreground question was: How do leaders of nonprofit arts and culture organizations in the Jacksonville, Florida, metropolitan area understand their roles in providing underserved K-12 students access to and opportunity for arts education? The research questions warranted a qualitative research design using semi-structured, in-depth interviews. The review of the literature documented the importance of arts education for all and how school policy mandates have led to a reduction in access to and opportunity for arts education, especially in schools with high poverty rates and students of color. Interview data were collected from 11 leaders of nonprofit arts and culture organizations. Data analysis involved identifying five typologies that organized the description and interpretation dimensions of Eisner’s process of educational criticism (1998): arts education, programs, and services; advocacy and engagement for the arts; challenges to providing access to and opportunities for arts education; the role of partnerships; and nonprofit arts and culture organizational development. Data analysis corroborated that the problems of inequitable arts education is still pervasive in K-12 education. The participants perceived their missions as focused on arts education for all and as contributing to filling the gap in providing equitable access to and opportunities for arts education for underserved K-12 students. The present study concluded that nonprofit arts and culture organizations can provide a unique set of contributions, such as programs for K-12 students, arts leadership development, and partnerships with schools and with each other in delivering equitable access to and opportunities for arts education for underserved K-12 students.