This thesis explores the experiences of parents with disabled children living without a diagnosis. Through thematic and narrative analysis of an in-depth qualitative interview study with 26 parents of disabled children, and by considering absent diagnosis in the context of sociological and other relevant theory, this thesis contributes to knowledge about diagnosis and about the experiences of families of disabled children without a diagnosis. The process of diagnosis, categories of diagnosis, and the consequences of living without a diagnosis are examined. Using interview data, including parent narratives and personal reflections, this thesis tells multiple stories revealing a play of diagnosis journeys: that of the parent participants living without a diagnosis; that of the researcher’s exploration of diagnosis; and that of the sociological significance of diagnosis. The hermeneutic journey of the literature review process is described, as the domains of sociology and medicine have shifted shape over the years of the study. I make sense of the sociological relevance of the empirical data generated, with a particular focus on the sociology of diagnosis, ethnographic studies of paediatric genetic diagnosis, and research with families with disabled children. Despite the estimated high prevalence of disabled children without a diagnosis, there is, as yet, little research with families and to date absent diagnosis in this context has not been considered by the sociology of diagnosis. That the absence of diagnosis can hold a mirror to diagnosis, and how absent diagnosis acts to expose the meanings of diagnosis, is proposed. And further, to know the nucleus of diagnosis we must look at what happens in its absence, considering the space non-diagnosis leaves and the differentiality on which diagnosis abuts. I embrace a natural history approach to methodology describing the methodological journey. Further depth is added to thematic data analysis by using a narrative approach to consider parents’ stories, and by punctuating the thesis with interludes of self-reflexive accounts of the researcher’s own story of living without a diagnosis. Key themes from the thematic and narrative analysis are reported: parents commonly conducted an intensive quest for diagnosis; perpetuity was a feature of this process of diagnosis, although searching for and interest in diagnosis commonly decreased over time; parents were active contributors to the process of diagnosis; parents had difficulty making sense of living without a diagnosis, and themes of fracture and deferral were identified; parents’ narratives had features of the chaos, quest and restitution typologies reported by Arthur Frank (1995), with an unresolved quest narrative as the core typology across parent accounts; a common metaphor of stasis of movement was identified in parent narratives. Key areas parents perceived not having a diagnosis had impacted on were: aetiology (not knowing what caused their child’s disability and what the risk of recurrence was); prognosis (not knowing what to expect in the future from their child’s health and development); access to support and services (including formal services and informal parent-to-parent support); and managing social interaction (how to describe their child’s disability to others). Living without a diagnosis has material effects and the study’s findings are relevant for theory and practice in and beyond medicine.

This study explored the lived experience of traumatisation manifesting as enduring undiagnosed post- traumatic stress disorder (PTSD) on the overall psychological functioning of members currently serving in the South African National Defence Force (SANDF) from an object-relations perspective. A qualitative approach with a phenomenological study design using semi-structured interviews and self- report questionnaires to gather data was employed. Prominent themes formed the content for interpretative phenomenological analysis (IPA) from an object-relations perspective on pathology in relation to untreated trauma of the psyche. The findings indicated that servicemen and women in the SANDF lived in a chronic state of psychic, occupational and relational disintegration. Recurrence of reactivated past unresolved traumas experienced in dreams, troubled sleep and internal conflict were characterised by annihilation anxiety, psychic numbing and repression. Further, there was a chronic sense of loss of the self through loss of good internal and external self-objects as well as in meaning of life and work as a soldier. The findings further revealed overall functional paralysis as evidenced in these SANDF members’continued psychological deterioration, which manifested in irreversible damage to character and cognitive deficits linked to chronic trauma in the form of undiagnosed PTSD. / Thesis (PhD (Psychology))--University of Pretoria, 2020. / Psychology / PhD (Psychology) / Unrestricted

This thesis develops novel statistical methodology for estimating the incidence and the prevalence of Human Immunodeficiency Virus (HIV) using routinely collected surveillance data. The robust estimation of HIV incidence and prevalence is crucial to correctly evaluate the effectiveness of targeted public health interventions and to accurately predict the HIV- related burden imposed on healthcare services. Bayesian CD4-based multi-state back-calculation methods are a key tool for monitoring the HIV epidemic, providing estimates of HIV incidence and diagnosis rates by disentangling their competing contribution to the observed surveillance data. Improving the effectiveness of public health interventions, requires targeting specific age-groups at high risk of infection; however, existing methods are limited in that they do not allow for such subgroups to be identified. Therefore the methodological focus of this thesis lies in developing a rigorous statistical framework for age-dependent back-calculation in order to achieve the joint estimation of age-and-time dependent HIV incidence and diagnosis rates. Key challenges we specifically addressed include ensuring the computational feasibility of proposed methods, an issue that has previously hindered extensions of back-calculation, and achieving the joint modelling of time-and-age specific incidence. The suitability of non-parametric bivariate smoothing methods for modelling the age-and-time specific incidence has been investigated in detail within comprehensive simulation studies. Furthermore, in order to enhance the generalisability of the proposed model, we developed back-calculation that can admit surveillance data less rich in detail; these handle surveillance data collected from an intermediate point of the epidemic, or only available on a coarse scale, and concern both age-dependent and age-independent back-calculation. The applicability of the proposed methods is illustrated using routinely collected surveillance data from England and Wales, for the HIV epidemic among men who have sex with men (MSM).

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This thesis focuses on the challenges in teaching students with undiagnosed mathematical difficulties in an inclusive environment. Previous research mainly focuses on medically diagnosed mathematical difficulties in special education. Therefore, this study will focus on undiagnosed mathematical difficulties that fall within the teacher’s responsibility in the main classroom, such as math anxiety, lack of motivation and low self-esteem. To include students with these difficulties in the teaching environment, the teacher needs to manage the entailed challenges. This study is based on a hypothesis and associated research questions to investigate what students see as difficulties within mathematics and, more indepth, what teachers see as challenges. The two surveys conducted are based on a quantitative survey and a semi-structured interview. Further, this thesis discusses the students’ difficulties within mathematics, the complexity of the inclusive process and the pedagogical competence. The results show that the time aspect and the need for an excellent pedagogical relationship with the students are two of the most common challenges for the teacher. Further, the conclusion confirms that to succeed with inclusive teaching, the teacher must practice relational pedagogy. Individualized education will also play an important role, which will be a significant challenge in larger groups of students. The study has been conducted under a short time limit, and therefore some convenience-selections have been necessary. Further research could advantageously contain the same hypothesis and be carried out in a larger population and for a more extended period.

Researchers have argued that a reason for non-medical use of prescription psychostimulants is to self-medicate an undiagnosed case of ADHD. Therefore, this study examined neuropsychological complaints in college students with and without a history of prescription psychostimulant use. College students (N = 615) completed an Internet-based survey assessing behaviors associated with prescription psychostimulant use and symptoms of neuropsychological impairment. The results of the current study support the hypothesis that college students who non-medically use prescription psychostimulants report more symptoms of cognitive impairment (i.e., memory and attention complaints) than college students classified as non-users. Complaints about memory and attention were as common in non-medical users as medical users. Overall, the results suggest that non-medical users may use prescription psychostimulants due to perceived symptoms of ADHD.

Students with emotional behavioral disorders (EBD) are at greater risk for dropping out of high school than other students, and are likely to experience fewer employment options and more societal marginalization. Alternative schools have been viewed as a last chance and best option for educating many students with EBD who have not actually been diagnosed. The purpose of this qualitative case study was to explore persistence and retention in the alternative school setting for students who may or may not have been diagnosed with EBD. Students in this study will be referred to as EBD. Although they have not been formally diagnosed, all of the students suffered with symptoms of emotional and behavioral disorders. Interview and observational data were examined through the theoretical lens of the Bandura's theory of self-efficacy and Erikson's theory of psychosocial development. The research questions focused on the meaning of academic persistence for students in an alternative school, the institutional efforts to retain students, and the processes and consequences to improve student engagement and retention. Seven teachers and administrators from an alternative school in Georgia were interviewed, and analysis and interpretation of data from the interviews, observations, and field notes revealed five major themes: support, acknowledgment for incremental gains, struggle to focus, and we are family. These results indicated that some of the most challenging students can persist when they are provided with support (parental, academic, emotional, and community), and future longitudinal research is needed on students' post-high school functioning. The results also showed the need for systemic changes that include formal assessments and diagnoses because access to psychological services are not provided until students have been properly diagnosed.

The aim of this study is to highlight and gain an increased understanding of the stigma that can occur while growing up without a correct diagnosis. Furthermore, the study aims to increase understanding of the importance and need for knowledge about autism among social workers who work in school and care environment. Even though society´s view of people with disability has changed for the better in recent times, previous research shows that there is a stigma around people diagnoses with autism. Research also shows that it is not the diagnosis itself that is stigmatizing but the characteristics that are related to it, which can mean that undiagnosed could experience the same stigma. Research further shows that there is a need to educate social workers about the experiences and difficulties that people with autism goes through in life. The empirical data that was used in this study is based on autobiographies written by people diagnosed with autism later in life. In addition to the autobiographies, an interview was conducted with an experienced social worker to deepen the analysis. Qualitative methods are used in the form of manifest qualitative content analysis and a semi structured interview that was transcribed and analyzed together with the autobiographies. To understand the empirical data two theories were used in the analysis process, symbolic interactionism and Goffman’s stigma. The result of this study shows that both authors' upbringing was marked by a difference that was due to deviations in social interaction, exclusion in several social contexts and a development of mental illness. It is also something that is confirmed by the social worker's experiences. Another conclusion from the social worker's experiences is that knowledge is needed to be able to identify individuals with autism and prevent the feeling of stigma and exclusion.

Barriers to reaching human immunodeficiency virus (HIV) testing prevent Canada from achieving The Joint United Nations Programme on HIV and AIDS (UNAIDS) target of 90 percent of undiagnosed people living with HIV knowing their HIV status by 2020 and receive treatment.(1) Fourteen percent (9,090 of 63,100) of Canadians living with HIV were unaware of their status by the end of 2016.(1)(p.9)Individuals exposed to HIV through heterosexual contact are overrepresented (28%) among the undiagnosed people living with HIV in Canada compared to other groups, such as men who have sex with men (18%) and people who inject drugs (20%).(2)(par.15)The reasons preventing this population to present themselves for testing in Ottawa, Ontario, remain poorly understood in the literature. Most of the literature on barriers to accessing HIV testing focuses on the traditional key groups who are likely to test, and limits analysis of these barriers on one or two levels. Equally, health service providers rarely understand challenges behind HIV testing for particularly young heterosexual African migrant men. These challenges may be contributing key barriers to HIV testing. On other hand, late presentation to treatment remains a global issue. Psychosocial outcomes especially after a new positive diagnosis can delay reaching early treatment and prevention services. Indeed, all test results negative or positive have consequences. Even those with a new negative test can return to risk taking behaviour if they delay accessing prevention education. Yet no systematic study exists in this area essential for quality improvement. Programming more equitable HIV testing services will require more comprehensive evidence about challenges and barriers behind accessing HIV testing and treatment to achieve UNAIDS target of 90 percent of undiagnosed people living with HIV knowing their status and receive treatment. This research aimed to contribute to this evidence through two phases. Phase 1 used the Joanna Briggs Institute methods to implement a scoping review on psychosocial outcomes and their measurements immediately following a new HIV diagnosis. This review considered all participants who tested for HIV – whether their results were positive or negative, as any test results have consequences, and regardless of age, sex, or setting – reported in published articles between 2007 -to the present date. Paper 1 presents the scoping review. Phase 2 relied on a qualitative methodology using Grounded Theory informed by a socio-ecological framework and a framework of access to healthcare to understand experiences of accessing HIV testing services in two parts: 1) to examine barriers to reaching HIV testing among young heterosexual African migrants, focusing on young men, in Ottawa (Paper 2); and 2) to identify challenges experienced by health service providers who make accessible HIV testing services to this population in Ottawa (Paper 3). There is some ambiguity in the use of the terms “first generation immigrants” and “second generation immigrants” (or children of first immigrants). In this study, the term migrants referred to both. Selecting participants from both groups (first and second generation) was important to include a wide variety of experiences and interpretations that reflect the study population. Furthermore, the term “health service providers” was used to refer to both healthcare providers and frontline service providers. Healthcare providers referred to those who conduct HIV testing in health facilities, whereas frontline service providers referred to those who provide care and support services needed by members in their communities before and after testing within AIDS organizations and community-based organizations.

Abstract Skin diseases are common: one in every three of all general practice patients have at least one dermatological problem. However, epidemiological studies addressing the overall prevalence of skin diseases are sparse. The skin is the largest organ in the body and it has several vital and immunological functions. Cutaneous signs are often the first manifestation of many systemic diseases. The aim of this study was to determine the overall prevalence, and the distribution according to sex and socioeconomic status, of skin diseases in an adult population. The study particularly focused on multiple melanocytic naevi and their risk factors because multiple melanocytic naevi are the strongest risk factor for melanoma. A further aim was to analyse the association between cutaneous disorders and systemic conditions; specifically to determine whether abnormal skin findings in toe webs have an association with abnormal glucose metabolism and whether skin diseases have a relationship with systemic low-grade inflammation. For these purposes a comprehensive dermatological evaluation was performed as a part of the 46-year follow-up survey of the Northern Finland Birth Cohort 1966. Data on this cohort have been collected since birth. Numerous laboratory tests were also performed cross-sectionally during the 46-year follow-up survey, including an oral glucose tolerance test and the measurement of fasting plasma glucose and glycated haemoglobin fraction. High sensitivity C-reactive protein was measured as a marker of low-grade inflammation. Over half (60%) of the 1 932 individuals examined had at least one skin disorder requiring further treatment. The need for treatment was more common in males and those with lower socioeconomic status. Multiple melanocytic naevi were found in 12% of individuals; high educational level, male sex and fair skin type increased the risk. Abnormal skin findings in toe web spaces was associated with undiagnosed type 2 diabetes. Atopic eczema, rosacea and onychomycosis were associated with low-grade inflammation. This unique study with nearly 2 000 subjects reports for the first time the overall prevalence of skin diseases in an unselected Finnish population. Its findings support the previous postulate that skin diseases are common in adults and suggest that skin evaluation should be an essential part of routine medical examinations in clinical practice. / Tiivistelmä Ihotaudit ovat yleisiä, ja jopa 30 %:lla yleislääkärin potilaista on jokin ihoon liittyvä ongelma. Väestötason tutkimuksia ihotaudeista on kuitenkin niukasti. Iho on ihmisen suuri elin, ja sillä on useita tärkeitä tehtäviä, kuten osallistuminen immunologiseen puolustukseen. Monet yleissairaudet voivat näkyä iholla jo ennen taudin puhkeamista ja ihoilmentymät voivat olla varhaisia merkkejä piilevästä sairaudesta. Tämän tutkimuksen tarkoituksena oli määrittää ihotautien esiintyvyys aikuisväestössä sekä ihotautien jakautuminen sukupuolen ja sosiaalisen aseman suhteen. Lisäksi tarkoituksena oli selvittää runsasluomisuuden (yli 50 pigmenttiluomea) esiintyvyyttä ja sen riskitekijöitä, sillä runsasluomisuus on melanooman merkittävin riskitekijä. Tutkimuksen tavoitteena oli myös selvittää ihotautien yhteyttä yleissairauksiin, kuten poikkeavien varvasvälilöydösten yhteyttä häiriintyneeseen sokeriaineenvaihduntaan sekä matala-asteisen tulehduksen ja ihotautien välistä yhteyttä. Osana Pohjois-Suomen syntymäkohortti 1966:n 46-vuotistarkastusta tehtiin kokonaisvaltainen ihon tutkiminen yhteensä 1 932:lle tutkimushenkilölle vuosina 2012–13. Samassa yhteydessä tutkittavilta määritettiin paastoverensokeri ja pitkäaikainen verensokeri sekä tehtiin sokerirasitustesti sokeriaineenvaihdunnan häiriön toteamiseksi. Matala-asteisen tulehduksen arvioimiseksi määritettiin herkkä C-reaktiivinen proteiini. Tutkimusjoukon pitkäaikaiset taustatiedot perustuivat syntymäkohortin aiempiin aineistoihin. Tutkittavista 60 %:lla todettiin jokin hoitoa vaativa ihotauti. Hoidon tarve oli suurempaa miehillä ja matalammissa sosiaaliluokissa. Runsasluomisuutta esiintyi 12 %:lla, ja korkea koulutustaso, miessukupuoli ja vaalea ihotyyppi lisäsivät riskiä. Varvasväleissä esiintyvät muutokset liittyivät diagnosoimattomaan diabetekseen. Atooppinen ihottuma, ruusufinni ja kynsien sieni-infektioon sopivat muutokset olivat yhteydessä matala-asteiseen tulehdukseen. Tämä lähes 2 000 henkilön koko ihon kliiniseen tutkimukseen perustuva työ raportoi ensimmäistä kertaa ihotautien yleistä esiintyvyyttä suomalaisessa, valikoitumattomassa väestössä. Tutkimus tukee aiempaa oletusta, jonka mukaan ihotaudit ovat aikuisväestössä yleisiä; ihon tutkiminen tulisi olla oleellinen osa potilaan kliinistä perustutkimusta.