Indiana University-Purdue University Indianapolis (IUPUI) / Shoulder pain was constantly reported as a problematic symptom causing dysfunction and quality of life interference after neck dissection in head and neck cancer patients. Due to a lack of conceptual framework and inconsistency of instrument selection, a comparison among previous studies was almost impossible, making it difficult to understand the phenomenon. The current study applied the University of California, San Francisco School of Nursing Symptom Management Model. The purposes of the study were to (a) describe the symptom experience of shoulder pain at 1 month after neck dissection, (b) describe the relationships among symptom experience of shoulder pain, functional status, and quality of life, and (c) identify the contextual variables, concurrent symptoms, and/or adherence predicting symptom experience of shoulder pain, functional status, and/or quality of life. This was a descriptive study with a convenience sample of head and neck cancer patients. The data were collected via a medical record review, a self-administered survey, and a physical examination. The data from 29 patients were entered for descriptive statistics, Pearson correlations, and multiple regressions. At 1 month after surgery, 62% of patients reported they had shoulder pain at some point within a week. Their shoulder pain was from mild to moderate. Fifty-nine percent complained that shoulder pain bothered them about the moderated level. In the final model, symptom experience, shoulder pain, was significantly correlated with one outcome, active shoulder abduction, but not the other, total quality of life, generic quality of life, and head and neck quality of life. Active shoulder abduction was significantly correlated with three quality of life measures. Adding significant predictors of symptom experience and outcomes into the final model, there is a potential that the model would be useful to guide treatment strategies. Treatment for myofascial pain of the levator scapulae could relieve shoulder pain after neck dissection and improve head and neck quality of life. Those with level V dissection were high risk populations of developing shoulder pain. Risk factors of quality of life, which were depression, loss of sensation, and radiation would describe how an intervention could change or unchange the patient’s life.

Despite the strong internal validity of functional analysis, most behavior analysts continue to use descriptive and indirect methods to conduct functional behavior assessment. However, most descriptive and indirect methods have received little empirical support for their convergent validity with functional analysis. The ABC narrative recording and the Open-Ended Functional Assessment Interview (OEFAI) stand out as descriptive and indirect methods that have received some empirical evidence for their convergent validity, but those studies included some limitations. Thus, this dissertation aimed to evaluate more thoroughly these two approaches. The purpose of the first study was to verify the convergent validity of ABC narrative recordings and of the OEFAI with a functional analysis. One hundred seventy-six behavior analysts analyzed ABC narrative and OEFAI transcripts of challenging behaviors in four children with autism spectrum disorder (ASD). Results show that, for three of four children, the OEFAI conclusions corresponded more with the outcomes of functional analysis than did the ABC narrative recording. Psychoeducators are also involved in the treatment of challenging behaviors in children with ASD. However, we did not find studies that described the performance of psychoeducators in functional behavior assessment. The purpose of the second study was to examine the convergent validity of behavioral functions identified by psychoeducators with the outcomes of functional analysis and to compare them with functions identified by behavior analysts. Fifty-four psychoeducators analyzed the same transcripts used in the first study to identify behavioral functions. Psychoeducators produced more accurate functions when using the OEFAI for three children in four. Behavior analysts were more exact than psychoeducators in four of seven comparisons while the three others remained undifferentiated. Altogether, the results underline the importance of enhancing training in functional behavior assessment for psychoeducators. / Malgré la validité interne élevée de l’analyse fonctionnelle, la majorité des analystes du comportement et des psychoéducateurs continuent d’utiliser les méthodes descriptives et indirectes pour effectuer des évaluations fonctionnelles du comportement. Cependant, la plupart des méthodes descriptives et indirectes ont reçu peu de soutien empirique pour appuyer leur validité convergente. La grille antécédent – comportement – conséquence (ACC) narrative et l’Open-Ended Functional Assessment Interview (OEFAI) se démarquent comme des méthodes descriptives et indirectes dotées de soutien empirique pour appuyer leur validité convergente, mais ces études comportent des faiblesses. Cette thèse vise donc à effectuer une évaluation plus approfondie de ces deux approches. L’objectif de la première étude est d’évaluer la validité convergente de la grille ACC narrative et de l’OEFAI. Nous avons recruté 176 analystes du comportement pour analyser des transcriptions de la grille ACC narrative et de l’OEFAI comportant des données de comportements problématiques de quatre enfants ayant un trouble du spectre de l’autisme (TSA). Les résultats montrent que pour trois enfants analysés sur quatre, les conclusions tirées de l’OEFAI correspondent plus souvent avec celles de l’analyse fonctionnelle que celles de la grille ACC narrative. Les psychoéducateurs interviennent aussi dans la réduction des comportements problématiques chez les enfants ayant un TSA. Toutefois, il est difficile de trouver des études qui décrivent les performances en évaluation fonctionnelle du comportement chez les psychoéducateurs. L’objectif de la seconde étude est d’examiner la validité convergente des fonctions comportementales identifiées par des psychoéducateurs et de les comparer à celles des analystes du comportement. Cinquante-quatre psychoéducateurs ont analysé les mêmes transcriptions de la grille ACC narrative et de l’OEFAI utilisées dans la première étude. Les résultats montrent que les psychoéducateurs sont plus exacts pour identifier la fonction du comportement en utilisant l’OEFAI pour trois des enfants et en utilisant la grille ACC pour un enfant. Les analystes du comportement sont plus exacts que les psychoéducateurs dans quatre comparaisons sur sept tandis que les trois autres sont non différenciées. Les résultats soulignent la nécessité de bonifier les formations en évaluation fonctionnelle du comportement chez les psychoéducateurs.

The study was undertaken to deepen understanding of living with a spinal cord injury (SCI) in the rural communities of the Eastern Cape Province, South Africa (RSA). The OR Tambo District Municipality, which was selected for its accessibility to the researcher, is virtually rural, the infrastructure is poorly developed and there is low socio-economic activity in the rural areas of the old Transkei. In the RSA services for management and rehabilitation of SCIs varies from province to province. A Heideggerian phenomenological approach was used to interpret the meaning of living with SCI persons in a rural community. The purpose was to describe and interpret what being-in the-world as a spinal cord injured person meant to the particpants. A key assumption in phenomenology is that understanding human beings and their actions is best achieved through examination of human experiences. Experience, including experience with living with SCI, offers itself as a record of human encounters, the interface between persons and their world, and experience can only be understood in terms of background and the social context of the experience (Pateman & Johnson 2000: 51). Phenomenological interviews with ten people living with SCI explored their experience. The overall goal was to increase awareness of their experiences of living with SCI, and to encourage incorporation of knowledge gained into nursing practice. The central question in the study was `What is it like to live with a spinal cord injury in a rural community? Data were analysed according to Heideggerian hermeneutic phenomenology. Two main themes were identified, namely reconceptualising being-in-the-world as a person with a disability; and being-with-each-other: experiencing being excluded, objectified and marginalized. The participants engaged in a process of reconstructing their identities following the traumatic loss of sensory and motor functioning. Data reflect the social and economic context in which living with SCI is experienced. The respondents' life experiences were influenced by socio-political, economic and historical factors, namely geographic location, poor infrastructure, poverty, low educational status, and unemployment and the community at large. It was noted that participants experienced difficulties in several areas in their daily life realm; naming, coping with health and disability problems, family interactions and relationships, and non-accessibility of amenities, including their own dwellings. In addition, being a person living with an SCI in the rural communities of the OR Tambo District Municipality carries a high physical and social risk due to lack of resources. The inability to live up to generally expected social roles led to role dissatisfaction. There is an urgent need for social support to overcome the negative societal attitudes experienced. They are forced into isolation with a limited social life and are poorly integrated into the communities in which they live. Most of what the participants raised pointed towards inadequate preparation for the outside world. Therefore, a holistic approach to rehabilitation is recommended, as holism means addressing the physical, social, emotional and cognitive needs. Accordingly, the researcher developed guidelines for facilitating community integration. In conclusion, understanding how people experience living with SCI in a rural community is an essential prerequisite to the development of appropriate strategies to facilitate community integration. / Health Studies / D. Litt et Phil (Health Studies)

The study was undertaken to deepen understanding of living with a spinal cord injury (SCI) in the rural communities of the Eastern Cape Province, South Africa (RSA). The OR Tambo District Municipality, which was selected for its accessibility to the researcher, is virtually rural, the infrastructure is poorly developed and there is low socio-economic activity in the rural areas of the old Transkei. In the RSA services for management and rehabilitation of SCIs varies from province to province. A Heideggerian phenomenological approach was used to interpret the meaning of living with SCI persons in a rural community. The purpose was to describe and interpret what being-in the-world as a spinal cord injured person meant to the particpants. A key assumption in phenomenology is that understanding human beings and their actions is best achieved through examination of human experiences. Experience, including experience with living with SCI, offers itself as a record of human encounters, the interface between persons and their world, and experience can only be understood in terms of background and the social context of the experience (Pateman & Johnson 2000: 51). Phenomenological interviews with ten people living with SCI explored their experience. The overall goal was to increase awareness of their experiences of living with SCI, and to encourage incorporation of knowledge gained into nursing practice. The central question in the study was `What is it like to live with a spinal cord injury in a rural community? Data were analysed according to Heideggerian hermeneutic phenomenology. Two main themes were identified, namely reconceptualising being-in-the-world as a person with a disability; and being-with-each-other: experiencing being excluded, objectified and marginalized. The participants engaged in a process of reconstructing their identities following the traumatic loss of sensory and motor functioning. Data reflect the social and economic context in which living with SCI is experienced. The respondents' life experiences were influenced by socio-political, economic and historical factors, namely geographic location, poor infrastructure, poverty, low educational status, and unemployment and the community at large. It was noted that participants experienced difficulties in several areas in their daily life realm; naming, coping with health and disability problems, family interactions and relationships, and non-accessibility of amenities, including their own dwellings. In addition, being a person living with an SCI in the rural communities of the OR Tambo District Municipality carries a high physical and social risk due to lack of resources. The inability to live up to generally expected social roles led to role dissatisfaction. There is an urgent need for social support to overcome the negative societal attitudes experienced. They are forced into isolation with a limited social life and are poorly integrated into the communities in which they live. Most of what the participants raised pointed towards inadequate preparation for the outside world. Therefore, a holistic approach to rehabilitation is recommended, as holism means addressing the physical, social, emotional and cognitive needs. Accordingly, the researcher developed guidelines for facilitating community integration. In conclusion, understanding how people experience living with SCI in a rural community is an essential prerequisite to the development of appropriate strategies to facilitate community integration. / Health Studies / D. Litt et Phil (Health Studies)

Thesis (PhD)--Stellenbosch University, 2014. / ENGLISH ABSTRACT: This dissertation sought to understand the experience of six participants as members of a cluster group of socially marginalised youth in a farmworker community. Through a collaborative process, the study sought to reframe the perceptions around the behavioural outcomes of membership to such an outcast group. Theories of empowerment through active participation underpinned the whole study. The study was qualitative in nature and used a Participatory Action research methodology which created the space for creative exploration with enabling methodologies such as the Youth Engagement Cycle and Activity Theory. Data were collected through focus group- and semi-structured interviews; participant observation and participant generated artefacts. Six adolescent males who were part of an already established cluster group of socially marginalised youth at a school were purposively selected into the study. The analysis of data was an ongoing and iterative process informed by the theories that underpinned the study and through content analysis of emerging themes. The study revealed that the cluster group was not formed with delinquent intent. Instead, it was created as a space that allowed its members to feel a sense of belonging, security and being valued. However, the group dynamic caused individual self-efficacy to become so enmeshed with collective agency that if left unchecked, it had the potential to propel its members along a trajectory to delinquency. The dissertation recommends understanding cluster groups as unique heterogeneous entities that show insight and empathy into the challenges their cohorts experience. Recognising that this elevates the peer group's influence above that of adults the study recommends a collaborative, well-structured and strategic intervention that allows individuals to experience success and self-influence in attaining mastery within the group dynamic. / AFRIKAANSE OPSOMMING: Hierdie verhandeling het ten doel gehad om ses deelnemers se ervaring as lede van 'n 'cluster' groep gemarginaliseerde jongmense binne 'n plaaswerker gemeenskap te probeer verstaan. Deur middel van 'n proses van samewerking, het die studie gepoog om die persepsies rakende die gedragsuitkomste van lidmaatskap binne so 'n geïsoleerde groep te herformuleer. Die hele studie is gebaseer op teorie van bemagtiging deur middel van aktiewe deelname. Die verhandeling was kwalitatief van aard en het gebruik gemaak van 'n Deelnemende Aksie Navorsingsmetodologie wat ruimte geskep het vir kreatiewe ontdekking met bemagtigende metodologieë soos bv. "Youth Engagement Cycle" en "Activity Theory". Data is ingesamel deur middel van 'n fokusgroep en semi-gestruktureerde onderhoude; deelnemer waarneming en deelnemer gegenereerde artefakte. Ses adolessente mans wat reeds deel was van 'n gevestigde groep sosiaal-gemarginaliseerde jongmense by 'n skool, is doelbewus geselekteer vir die studie. Die analise van die data was 'n deurlopende en iteratiewe proses wat belig is deur die teorieë waarop die studie gebaseer was asook deur inhoudsanalise van die ontluikende temas. Die studie het getoon dat die 'cluster' groep nie gevorm is met misdaad as doel nie. Inteendeel, die groep het ontstaan as 'n ruimte wat sy lede toegelaat het om 'n mate van geborgenheid, sekuriteit en waardering te ervaar. Die groepsdinamiek het individuele self-doeltreffendheid toegelaat om so verbonde te raak met kollektiewe agentskap dat indien dit nie gekontroleer was nie, dit die potensiaal getoon het om sy lede op 'n trajek van jeugmisdaad te plaas. Die verhandeling beveel dus aan dat 'n 'cluster' groep gesien word as 'n unieke heterogene entiteit wat insig en empatie toon met die uitdagings wat lede ervaar. Op grond van die feit dat dit die portuurgroep se invloed bo die van die volwassenes verhef, wil die studie 'n samewerkende, goedgestruktureerde en strategiese bemiddeling aanbeveel wat die individu sal toelaat om sukses en selfgelding te ervaar met die bereiking van bemeestering binne die dinamiek van die groep.

Les comportements boulimiques, soit les comportements hyperphagiques (l’ingestion d’une importante quantité de nourriture dans un temps limité et avec un sentiment de perte de contrôle) et les comportements compensatoires (les comportements mis en place pour éviter un gain de poids, tels que les vomissements provoqués, la restriction et le jeûne, l’exercice physique excessif ainsi que la prise de laxatifs et de diurétiques), dépassent largement les préoccupations reliées à l’image corporelle. Les comportements boulimiques, comme de nombreux autres comportements maladaptés, sont liés à des difficultés de régulation émotionnelle dans des modèles explicatifs, notamment parce qu’ils peuvent aider à réguler des émotions difficiles. Plus spécifiquement, plusieurs émotions ont été associées aux comportements boulimiques, tels que le dégoût, la culpabilité, la honte, l’envie, la fierté et les émotions négatives (indifférenciées). Les variations des émotions observées ont donné lieu à des modèles théoriques des fonctions de régulation émotionnelle des comportements boulimiques. Cette thèse vise à mieux expliquer à quoi servent les comportements boulimiques : Comment peuvent-ils aider à faire face à certaines émotions, les diminuer ou les augmenter? Par quels mécanismes de régulation émotionnelle agissent-ils? Pour répondre à ces questions de recherche, trente-cinq femmes répondant aux critères diagnostiques de la boulimie du DSM-5-TR ont participé à deux études. Premièrement, des questionnaires mesurant les comportements, les difficultés de régulation émotionnelle et les émotions lors des comportements boulimiques ont été complétés. Deuxièmement, des questionnaires mesurant les émotions et les stratégies de régulation émotionnelle ont été complétés de manière écologique à quatre moments des comportements boulimiques : avant et après les comportements hyperphagiques; avant et après les comportements compensatoires. Les résultats de recherche montrent que les difficultés de régulation émotionnelle les plus retrouvées dans les comportements boulimiques sont les difficultés à contrôler des comportements impulsifs, alors que la peur est l’émotion la plus corrélée aux comportements boulimiques. Les difficultés à contrôler des comportements impulsifs et la peur montrent une contribution unique significative dans la prédiction des comportements boulimiques. Plus spécifiquement, en ce qui concerne les patrons de variations des émotions dans le cycle des comportements boulimiques (hyperphagiques/compensatoires), les émotions négatives (indifférenciées) ainsi que le dégoût, la culpabilité et la honte augmentent avec les comportements hyperphagiques et diminuent avec les comportements compensatoires, alors que la peur ne varie pas. Seules l’envie et la fierté diffèrent avant et après les comportements boulimiques : l’envie diminue et la fierté augmente. Pour ce qui est des stratégies de régulation émotionnelle, la suppression, la sélection de la situation et la modulation de la réponse sont significativement plus utilisées durant les comportements boulimiques, alors que la modification de la situation est plus employée lors des comportements compensatoires. En guise de conclusions à la présente thèse, un nouveau modèle théorique des fonctions de régulation émotionnelle des comportements boulimiques est proposé, intitulé le modèle de la redirection vers le corps. Les implications théoriques et cliniques du modèle proposé sont également discutées, notamment en lien avec les comportements boulimiques ainsi que d’autres comportements maladaptés. / Bulimic behaviors, which consist of binge eating behaviors (eating a large amount of food in a limited amount of time and with a sense of loss of control) and compensatory behaviors (behaviors put in place to avoid weight gain, such as induced vomiting, restriction and fasting, excessive physical exercise, and taking laxatives and diuretics) go far beyond body image concerns. Bulimic behaviors, like many other maladaptive behaviors, are linked to difficulties with emotion regulation in explanatory models, in part because they can help regulate difficult emotions. More specifically, several emotions have been associated with bulimic behaviors, such as disgust, guilt, shame, envy, pride and negative (undifferentiated) emotions. The observed changes in emotions have given rise to theoretical models of the emotion regulation functions of bulimic behaviors. This thesis aims to better explain what bulimic behaviors are used for: How can they help to cope with certain emotions, decrease ones or increase ones? What emotion regulation mechanisms do they use? To answer these research questions, thirty-five women meeting the DSM-5-TR diagnostic criteria for bulimia nervosa participated in two studies. First, questionnaires measuring behaviors, emotion regulation difficulties and emotions related to bulimic behaviors were completed. Second, questionnaires measuring emotions and emotion regulation strategies were completed in an ecological manner at four points during bulimic behaviors: before and after binge eating behaviors; before and after compensatory behaviors. Research results show that the most common emotion regulation difficulties found in bulimic behaviors are difficulties controlling impulsive behaviors, while fear is the emotion most correlated with bulimic behaviors. Difficulties in controlling impulsive behaviors and fear show a significant unique contribution in predicting bulimic behaviors. More specifically, with respect to patterns of variation in emotions in the bulimic cycle (binge eating/compensatory behaviors), negative (undifferentiated) emotions as well as disgust, guilt and shame increase with binge eating behaviors and decrease with compensatory behaviors, whereas fear does not vary. Only envy and pride differ before and after bulimic behaviors: envy decreases and pride increases. In terms of emotion regulation strategies, suppression, situation selection and response modulation are significantly more used during bulimic behaviors, while situation modification is more used during compensatory behaviors. As a conclusion to this thesis, a new theoretical model of the emotion regulation functions of bulimic behaviors is proposed, called the body redirection model. The theoretical and clinical implications of the proposed model are also discussed, particularly in relation to bulimic behaviors as well as other maladaptive behaviors.

Many older adults desire to maintain their quality of life by living and aging independently in their own homes. However, it is difficult for older adults to notice and track the subtle changes in their own abilities because these abilities can change gradually over a long period of time. Technology in the form of ubiquitous sensors embedded in objects in the home can play a role in keeping track of the functional abilities of individuals unobtrusively, objectively, and continuously over a long period of time. This work introduces a sensing technique called “task-based embedded assessment” that monitors how well specific tasks important for independence are carried out using everyday objects found in the home with which individuals regularly interact. Following formative studies on the information needs of older adults and their caregivers, a sensing system called “dwellSense” that can monitor, assess, and provide feedback about how well individuals complete tasks, such as taking medications, using the phone, and making coffee, was designed, built, and evaluated. Multiple longterm (over 10 months) field deployments of dwellSense were used to investigate how the data collected from the system could support greater self-awareness of abilities and intentions to improve in task performance. Presenting and reflecting on data from ubiquitous sensing systems such as dwellSense is challenging because it is both highly dimensional as well as large in volume, particularly if it is collected over a long period of time. Thus, this work also investigates the time dimension of reflection and has identified that real-time feedback is particularly useful for supporting behavior change, and longer-term trended feedback is useful for greater awareness of abilities. Traditional forms of assessing the functional abilities of individuals tend to be either biased, lacking ecological validity, infrequent, or expensive to conduct. An automated sensor-based approach for assessment is compared to traditional performance testing by a trained clinician and found to match well with clinician-generated ratings that are objective, frequent, and ecologically valid. The contributions from this thesis not only advance the state of the art for maintaining quality of life and care for older adults, but also provide the foundations for designing personal sensing systems that aim to assess an individual’s abilities and support behaviors through the feedback of objective, timely sensed information.