L’expérience d’un cancer à l’enfance peut entraîner différents impacts physiques, neurologiques et émotionnels, autant à court terme qu’à long terme. Les survivants d’une leucémie lymphoblastique aigüe (LLA) sont une population vulnérable à la détresse émotionnelle, qui peut perdurer et même s’aggraver avec le temps. Malheureusement, les outils de repérage de la détresse émotionnelle utilisés en clinique, tel que le Thermomètre de Détresse (TD), génèrent un niveau élevé d’erreurs. L’objectif de cette thèse est d’étudier la détresse émotionnelle des survivants d’une LLA pédiatrique, en étudiant la caractérisation et la détection de cette détresse, ainsi que les facteurs explicatifs de cette détresse. La présente thèse est composée de quatre articles. Le premier article a pour objectif de caractériser un niveau de détresse émotionnelle élevé, mesuré par le Thermomètre de Détresse (TD), au sein de 202 survivants de LLA pédiatrique. Les résultats montrent qu’une cotation élevée au TD est associée à l’affectivité négative chez les enfants et les adultes, et à l’anxiété chez les adultes. Également, un niveau de détresse faible est associé à l’affectivité positive chez les adultes. Après avoir davantage défini les particularités de la détresse émotionnelle des survivants de LLA pédiatrique, nous souhaitions étudier le repérage de cette détresse. Le second article a comme objectif d’identifier une stratégie de repérage de la détresse émotionnelle en deux étapes, en utilisant le TD comme première étape et une question sur les émotions (peur, tristesse, inquiétude, colère, fatigue) comme deuxième étape. L’étude a été effectuée auprès de 255 survivants de LLA pédiatrique. Cette étude montre qu’une stratégie en deux étapes (TD combiné à la question sur la tristesse ou à celle sur l’inquiétude) repère plus efficacement les survivants ne rapportant pas de détresse ainsi que les survivants rapportant une détresse élevée, comparativement à l’utilisation du TD seul au seuil 4, pour le repérage de la détresse anxio-dépressive (dépression et/ou anxiété). Après avoir répondu à l’objectif de détection de la détresse, nous souhaitions étudier les facteurs explicatifs d’une détresse élevée. En nous basant sur les appuis de la littérature, nous souhaitions étudier particulièrement l’association entre les traitements de corticostéroïdes et la détresse émotionnelle. Le troisième article est une revue de littérature qui vise à synthétiser les résultats sur l’association entre la présence d’une détresse émotionnelle élevée rapportée par les patients ou les survivants de LLA pédiatrique, et la dose cumulative de corticostéroïdes reçue durant les traitements. Les résultats de cette étude ne permettent pas d’identifier une association significative entre les différentes dimensions de la détresse émotionnelle (émotions, comportements, neurocognitions, fatigue/sommeil) et la dose cumulative de corticostéroïdes reçue durant les traitements. Toutefois, cette revue de littérature a permis d’identifier des recommandations pour améliorer l’information divulguée dans les études, afin de faciliter la synthèse des résultats de la littérature. Finalement, afin d’étudier de manière empirique les différents facteurs reliés aux traitements de radiothérapie, de chimiothérapie et de corticothérapie, associés à la détresse émotionnelle, nous avons effectué la quatrième étude. Le quatrième article est une étude empirique sur les facteurs explicatifs de la détresse émotionnelle de 212 survivants d’une LLA pédiatrique. Les résultats de cette étude montrent qu’il n’y a pas d’association entre les variables reliées aux traitements de radiothérapie, de chimiothérapie et de corticothérapie, et la détresse anxio-dépressive. La présente thèse a permis d’apporter un éclairage sur la caractérisation et la détection de la détresse émotionnelle des survivants d’une LLA pédiatrique. Les résultats prometteurs de l’efficacité d’une stratégie de repérage de la détresse en deux étapes génèrent des implications cliniques importantes et novatrices pour les cliniques de cancérologie. Des recherches ultérieures sur l’amélioration du repérage de la détresse, ainsi que sur l’identification des facteurs explicatifs de cette détresse, autant chez les patients que chez les survivants des différents types de cancers pédiatriques, sont nécessaires afin de mieux comprendre, prévenir et traiter cette détresse émotionnelle élevée, rapportée par le groupe de survivants les plus vulnérables. / Pediatric cancer is associated with different physical, neurological, and emotional short- and long-term adverse effects. Survivors of childhood acute lymphoblastic leukemia (ALL) are vulnerable to emotional distress, which could persist or increase over time. Unfortunately, the existing routine screening tools of emotional distress, such as the Distress Thermometer (DT) generate high rates of errors. The aim of this thesis is to study emotional distress among childhood ALL survivors. We studied the description and the screening of emotional distress, and the identification of predictive factors of distress. This thesis is composed of four articles. The objective of the first article is to describe the characteristics of a high level of emotional distress measured by the DT, among 202 childhood ALL survivors. The results suggest that a high level of distress on the DT is associated with negative affectivity among children and adults, and with anxiety among adults. Also, a low level of distress is associated with positive affectivity among adults. After defining emotional distress’s characteristics among pediatric ALL survivors, we wanted to study emotional distress’ screening. The objective of the second article is to study the efficacy of a two-step strategy, combining the DT at step one, and one question on emotions (fear, sadness, concerns, anger, fatigue) at step two. The study is conducted among 255 childhood ALL survivors. The results show that a two-step strategy (DT combined with emotional question of sadness or concerns) is more effective than the DT used alone at the cut point 4, to screen mixed anxious-depressive distress (depression and/or anxiety). After responding to the objective of distress’ screening, we wanted to study the predictive factors associated to emotional distress. Based on the literature support, we desired to study the association between corticosteroids ALL treatments and emotional distress. The third article is a literature review. The aim of this review is to synthesize the literature results on the association between presence of elevated emotional distress among childhood ALL patients and survivors, and the cumulative doses of corticosteroids received during ALL treatments. The results do not suggest association between cumulative doses of corticosteroids and any domains of emotional distress (emotions, behaviours, neurocognitions, and fatigue/sleep). However, this review has allowed us to identify recommendations for future studies, to improve the synthesis of research results. Finally, we wanted to empirically study the different treatment related factors (radiotherapy, chemotherapy, corticotherapy) associated to emotional distress. The fourth study is an empirical study on predictive factors of emotional distress among 212 childhood ALL survivors. The results show that there is no association between treatment related variables (radiotherapy, chemotherapy and corticotherapy) and mixed anxious-depressive distress. This thesis has allowed to different contributions on the characterization and the screening of emotional distress among childhood ALL survivors. The results are promising. The efficacy of the screening two-step strategy for emotional distress. These results have significant and innovative clinical implications. Future researches are needed to improve the screening of emotional distress and the identification of predictive factors, both in patients and survivors of the different childhood cancer types. More experimental researches are needed to understand high level of emotional distress among patients and survivors of childhood cancer, and to prevent and treat this distress.

The aim of this qualitative study was to explore and describe the experiences and needs of mothers of sexually abused children. A conceptual framework outlined the theoretical underpinnings of this study which focused on the core theoretical concepts of Gestalt therapy theory and the field of child sexual abuse with particular focus on the impact that the child’s trauma has on the mother. Semi–structured interviews were conducted with a sample of five mothers in order to gain rich data from their phenomenological experience. These interviews were transcribed into text and analysed. Several themes and categories emerged and were explored with the use of a literature control. These themes included the mother’s phenomenological experience of the sequence of disclosure, their awareness of the impact of their child’s sexual abuse on their holistic sense of self, their intra and interpersonal contact making styles, their need to facilitate a healthy sense of self and lastly their phenomenological knowledge gained through their field experience. The disclosure of their child’s sexual abuse signifies the start of the secondary trauma experienced by mothers, and the start of the cycle of a new experience that they struggle to bring to closure. This knowledge that their child has been sexually abused has an immediate negative impact on the mother’s field and their sense of self. Their process of healthy self–regulation is hindered due to the strong negative polarities in the self being formed and the self–blame that the mothers experience. This study therefore concluded and strongly recommended that mothers of sexually abused children receive support in the form of therapeutic intervention and education while their child receives therapy. / Thesis (M.A. (MW))--North-West University, Potchefstroom Campus, 2012.

The aim of this qualitative study was to explore and describe the experiences and needs of mothers of sexually abused children. A conceptual framework outlined the theoretical underpinnings of this study which focused on the core theoretical concepts of Gestalt therapy theory and the field of child sexual abuse with particular focus on the impact that the child’s trauma has on the mother. Semi–structured interviews were conducted with a sample of five mothers in order to gain rich data from their phenomenological experience. These interviews were transcribed into text and analysed. Several themes and categories emerged and were explored with the use of a literature control. These themes included the mother’s phenomenological experience of the sequence of disclosure, their awareness of the impact of their child’s sexual abuse on their holistic sense of self, their intra and interpersonal contact making styles, their need to facilitate a healthy sense of self and lastly their phenomenological knowledge gained through their field experience. The disclosure of their child’s sexual abuse signifies the start of the secondary trauma experienced by mothers, and the start of the cycle of a new experience that they struggle to bring to closure. This knowledge that their child has been sexually abused has an immediate negative impact on the mother’s field and their sense of self. Their process of healthy self–regulation is hindered due to the strong negative polarities in the self being formed and the self–blame that the mothers experience. This study therefore concluded and strongly recommended that mothers of sexually abused children receive support in the form of therapeutic intervention and education while their child receives therapy. / Thesis (M.A. (MW))--North-West University, Potchefstroom Campus, 2012.

There is growing interest in applying information and communication technology (ICT) in healthcare. The attention to ICT stems from several factors: costs of healthcare, high prevalence of somatic diseases, longer life expectancy and technological advancements. The quest to meet the growing healthcare needs has led authorities to allocate resources to develop technological solutions. Although this research investment is helpful for the information technology sector, these projects face challenges in working with multidisciplinary teams, recruiting participants and moving research to practice. This dissertation investigates the potential of ICT use in psychosocial support communication designed for people with emotional distress associated with a somatic disease (PEDASDs). The research aims to deliver design principles (DPs) for these ICTs, for three stakeholder groups: nurses, therapists and PEDASDs. The DPs focus on communication between these stakeholder groups and not on the overall ICT design. An interpretative approach was adopted to investigate the stakeholders’ unique ICT requirements. This method allows insights into the stakeholder’s world. Three studies, using semi-structured interviews, at oncology facilities in two healthcare system models (Trinidad & Tobago and Sweden), provide the empirical data. The stakeholders revealed not only their communication support needs but also other issues including the practical distresses of living with a chronic disease, limited support, lack of information, unwillingness to associate with other PEDASDs, professionalism between healthcare providers and disconnected healthcare services. Common ground, bridges and weak ties provide the theoretical framework to explore the findings. Eight DPs emerged from the studies: the healthcare system model, need to educate the stakeholders, ICT customisation, support of stakeholders’ information needs, allow access to external resources, support multidisciplinary team communication, support for self-care and support for significant others. The findings could potentially serve as a guide for ICT projects that develop artefacts for psychosocial support and provide a theoretically grounded understanding of stakeholder communication and relationships. The potential for future work includes investigating the issues of legislation and ethics, studying the needs of significant others, exploring the potential for ICTs in other healthcare system models (particularly the out-of-pocket health system) and examining the impact of social media on psychosocial support. / Det finns ett växande intresse att använda informations- och kommunikationsteknologi (IKT) inom hälso- och sjukvården. Intresset för IKT påverkas av flera faktorer: sjukvårdens kostnader, prevalensen av somatiska sjukdomar, ökad medellivslängd och teknologiska framsteg. Utmaningen att hantera de växande sjukvårdsbehoven har lett till att statliga myndigheter har allokerat resurser för att utveckla teknologiska lösningar. Trots att forskningsinvesteringarna gynnar informationsteknologisektorn i stort möter de konkreta forskningsprojekten utmaningar såsom arbete inom tvärvetenskapliga grupper, rekrytering av deltagare till studier samt implementering. Denna avhandling undersöker möjligheten att använda IKT för kommunikation av psykosocialt stöd eller vård (care). Detta stöd är utformat för personer med emotionella problem relaterade till en somatisk sjukdom (PEDASD). Forskningen syftar till att leverera designprinciper (DP) för tre intressegrupper som använder IKT: sjuksköterskor, terapeuter och PEDASD. Designprinciperna fokuserar på kommunikation mellan de tre intressegrupperna och inte på den övergripande IKT-designen. Ett tolkande tillvägagångssätt har använts för att undersöka intressegruppernas unika IKT-krav och önskemål. Denna metod gör det möjligt att studera intressegruppernas upplevelser. Tre undersökningar, som baseras på semistrukturerade intervjuer, har genomförts vid avdelningar för onkologisk vård inom två sjukvårdssystemmodeller i Trinidad & Tobago respektive Sverige. Studiens empiriska data utgörs av intervjuerna. Data har sedan analyserats utifrån det teoretiska ramverket: Common ground, bridges och weak ties. I sina svar nämnde intressegrupperna inte enbart deras behov av kommunikationsstöd, utan också annat som till exempel praktiska problem att leva med en kronisk sjukdom, begränsat stöd, brist på information, ovillighet att förknippas med andra PEDASD, de professionella relationerna mellan sjukvårdens olika yrkesgrupper samt avsaknaden av koordination inom sjukvården. Analysen resulterade i åtta designprinciper: sjukvårdssystemmodellen, behovet av att utbilda intressegrupperna, IKT-anpassning, stöd för intressegruppernas informationsbehov, tillgång till externa resurser, stöd för kommunikation inom tvärvetenskapliga forskargrupper, stöd för självhjälp och stöd till närstående. Resultaten har potential att fungera som en guide för IKT-forskningsprojekt som utvecklar artefakter för psykosocialt stöd och som presenterar en teoretiskt grundad förståelse av intressegruppers kommunikation och relationer. Resultaten pekar också på behovet av framtida forskning om lagstiftning och etik, nära anhörigas behov, potentialen för IKT inom andra sjukvårdssystemmodeller (i synnerhet system där patienter betalar mer själva) samt sociala mediers inverkan på psykosocialt stöd.

Contexte. La croissance du temps d'écran dans notre société, plus spécifiquement l’attrait grandissant à l’endroit des jeux vidéo est fulgurant. Ce passe-temps peut-il avoir des conséquences négatives sur l’ajustement psychosocial des enfants un an plus tard ?Objectif. Identifier les associations prospectives entre l’engagement dans les jeux vidéo à 12 anset le bien-être psychosocial à l’âge de 13 ans.Méthode. Cette étude comprend 1344 sujets dont 702 filles et 642 garçons provenant de l’ÉtudeLongitudinale du Développement des Enfants du Québec (ÉLDEQ). À 12 ans, l’enfant a rapporté le nombre d’heures par semaine durant lesquelles il s’engageait dans les jeux vidéo. Puis, à l’aide d’échelles fidèles et valides, celui-ci a rapporté ses comportements d’agressivité réactive, d’inattention et d’impulsivité ainsi que sa détresse émotionnelle à 13 ans. Pour mesurer les associations prospectives entre les jeux vidéo et le bien-être à 13 ans, des régressions multiples ont été effectuées tout en contrôlant les variables confondantes et concurrentes pertinentes.Résultats. L’engagement dans les jeux vidéo à 12 ans est associé à une augmentation des comportements d’agressivité réactive (β= 0,13), des symptômes de détresse émotionnelle (β = 0,10) ainsi que des comportements d’inattention et d’impulsivité (β = 0,15) à 13 ans chez les garçons. Quant aux filles, l’engagement dans les jeux vidéo à 12 ans est associé à une augmentation des comportements d’agressivité réactive (β= 0,16) ainsi que des comportements d’inattention et d’impulsivité (β = 0,09) à 13 ans. Aucune association entre les jeux vidéo et la détresse émotionnelle ne fut avérée pour cette population.Conclusion. Les jeux vidéo peuvent présenter un facteur de risque quant au développement ultérieur de difficultés, soit plus de comportements d’agression réactive, d’inattention et d’impulsivité, ainsi que davantage de détresse émotionnelle. Il est important d’agir de manière préventive quant à la quantité de temps alloué à ce passe-temps. / Context. The growth of screen time in our society, as well as the growing appeal for video games is dazzling. However, can this hobby have negative consequences on the psychosocial adjustment of children a year later? Objective. Identify the prospective associations between engagement in video games at age 12 and psychosocial well-being at age 13. Method. This study includes 1344 subjects including 702 girls and 642 boys from the Longitudinal Study of the Development of Children in Quebec (ÉLDEQ). At 12 years old, the child selfreported the number of hours he engaged in video games per week. Then, using loyal and valid scales, he reported reactive aggression, inattention and impulsivity and emotional distress at 13 years of age. To measure the prospective associations between video games and well-being at 13, multiple regressions were studied while controlling for the relevant confounding and competing variables. Results. Engaging in video games at 12 is associated with an increase in reactive aggression (β=0.13), symptoms of emotional distress (β = 0.10), and inattentiveness and impulsivity (β = 0.15) at 13 for boys. Engaging in video games at 12 is associated with an increase in reactive aggression (β=0.16) and inattentiveness and impulsivity (β = 0.09) at 13 for girls. They were no association between video games and emotional distress for this population. Conclusion. Video games can be a risk factor for developing difficulties later, more reactive aggression, more attention and impulsiveness, and more emotional distress. In this sense, it is important to act in prevention as to the number of times allocated to this hobby.

Objective: Soft tissue sarcomas (STS) and gastrointestinal stromal tumours (GIST) are a group of rare malignant tumours with a high and heterogenous disease burden. As evidence is scarce, we analysed the prevalence of increased emotional distress and identified distress‐associated factors in these patients. - Methods: The PROSa‐study (Burden and medical care of sarcoma) was conducted between 2017 and 2020 in 39 study centres. Cross‐sectional data from adult STS and GIST patients were analysed. Distress was measured with the Patient Health Questionnaire (PHQ‐4). The relation of socioeconomic and clinical factors with distress was explored in adjusted logistic regression models. - Results: Among 897 patients, 17% reported elevated anxiety and 19% reported depression. Unemployed patients (odds ratio [OR] 6.6; 95% CI 2.9–15.0), and those with a disability pension (OR 3.1; 95% CI 1.9–5.0) were more likely to experience distress compared to employed patients. Also, patients with a disability pass had higher odds of increased distress than those without (OR 1.8; 95% CI 1.2–2.7). Lowest distress was observed in patients 2 to <5 years and ≥5 years after diagnosis (comparison: <6 months) (OR 0.4; 95% CI 0.2–0.6) and (0.3; 95% CI 0.2–0.6). Patients with thoracic STS (vs. lower limbs) had twice the odds to experience distress(OR2.0;95%CI 1.1–3.6). Distress was seen almost twice as often in patients with progressive disease (vs. complete remission) (OR 1.7; 95% CI 1.1–2.8). - Conclusion: The prevalence of elevated distress in STS and GIST patients is high. In unemployed patients, in those with a disability pension and in newly diagnosed patients a noticeable increase was observed. Clinicians should be aware of these factors and consider the social aspects of the disease.

The desire to enhance and make ourselves better is not a new one and it has continued to intrigue throughout the ages. Individuals have continued to seek ways to improve and enhance their well-being for example through nutrition, physical exercise, education and so on. Crucial to this improvement of their well-being is improving their ability to remember. Hence, people interested in improving their well-being, are often interested in memory as well. The rationale being that memory is crucial to our well-being. The desire to improve one’s memory then is almost certainly as old as the desire to improve one’s well-being. Traditionally, people have used different means in an attempt to enhance their memories: for example in learning through storytelling, studying, and apprenticeship. In remembering through practices like mnemonics, repetition, singing, and drumming. In retaining, storing and consolidating memories through nutrition and stimulants like coffee to help keep awake; and by external aids like notepads and computers. In forgetting through rituals and rites. Recent scientific advances in biotechnology, nanotechnology, molecular biology, neuroscience, and information technologies, present a wide variety of technologies to enhance many different aspects of human functioning. Thus, some commentators have identified human enhancement as central and one of the most fascinating subject in bioethics in the last two decades. Within, this period, most of the commentators have addressed the Ethical, Social, Legal and Policy (ESLP) issues in human enhancements as a whole as opposed to specific enhancements. However, this is problematic and recently various commentators have found this to be deficient and called for a contextualized case-by-case analysis to human enhancements for example genetic enhancement, moral enhancement, and in my case memory enhancement (ME). The rationale being that the reasons for accepting/rejecting a particular enhancement vary depending on the enhancement itself. Given this enormous variation, moral and legal generalizations about all enhancement processes and technologies are unwise and they should instead be evaluated individually. Taking this as a point of departure, this research will focus specifically on making a case for ME and in doing so assessing the ESLP implications arising from ME. My analysis will draw on the already existing literature for and against enhancement, especially in part two of this thesis; but it will be novel in providing a much more in-depth analysis of ME. From this perspective, I will contribute to the ME debate through two reviews that address the question how we enhance the memory, and through four original papers discussed in part three of this thesis, where I examine and evaluate critically specific ESLP issues that arise with the use of ME. In the conclusion, I will amalgamate all my contribution to the ME debate and suggest the future direction for the ME debate.