Changes in the health-care system during the past decades have led to an increased transfer of health care to the home environment which also concerns patients treated with home enteral tube feeding (HETF). Research is scarce about how HETF care is functioning. Therefore, the overall aim with this thesis was to describe and explore HETF care and treatment from patients', relatives' and nurses' perspectives. Three qualitative and one quantitative study were used. The findings showed that the HETF treatment and care had a great impact on daily life for both patients and their relatives and implied many practical, emotional and social problems in their daily life, which they strived to manage. Side effects were common and the patients' reported low HRQL and general health. The amount and quality of received guidance and support from the health care, not least before discharge, turned out to have impact on the patients' and the relatives' daily life and how they could manage their situation. Lack of guidance and support meant insecurity, worries and distress. Cooperation in the care trajectory was found to be decisive for how well the care was running. Nurses' knowledge about tube feeding and discharge planning procedures, their commitment to the patients' care, as well as clarity regarding responsibility of HETF care were factors of crucial importance on how the cooperation worked, and the quality of the HETF care. This thesis shows the need of improvements regarding the care of HETF patients and their relatives.

This thesis is about assessments of young people in secure accommodations. Institutional assessments relate to the paradox in child welfare of combining control and care. The procedure raises questions about their implications for young people, their caseworkers and evolving care trajectories. Although institutional assessments of young people have a historical heritage, research about their implications is lacking. The aim of the thesis is to explore young people’s and their caseworkers’ experiences of assessments in secure accommodations and their implications for young people’s care trajectories. Methods used are primarily repeated interviews with 16 young people during a period of two years and one interview with their caseworkers. Surveys about 85 youths, participatory observations and written assessments are also included. This thesis takes an interactionist approach and the material has been analysed with the main concept of care trajectory along with the concepts of self-presentation, total institution, institutional identity and texts as coordinators. The results are presented in four papers. The concluding analysis shows that assessments in secure accommodations can be divided into three elements: the practice, the text and the placement. These three elements have different implications for the young people and the caseworkers. For the young people the practice and the placement converge into an assessment universe that, with the text, intensifies their shaping of self-identity. The young people’s experiences are characterised by lack of control over their self-presentations, the present and the future. For the caseworkers, the practice has implications for their understanding of the young people’s individual troubles, the text for negotiating with other actors and the placement in their efforts to achieve change in the young people’s troublesome situations. The assessments’ implications for stability and foreseeability in the young people’s further care trajectories are limited. Moreover, the procedure of assessing young people in itself contains instability through involving several professionals in different parts of the assessment and decision-making process. Despite lack of stability, the thesis reveals that some young people experience the assessment as a place for self-development and where the course of the care trajectory changes to the better.

This thesis is about assessments of young people in secure accommodations. Institutional assessments relate to the paradox in child welfare of combining control and care. The procedure raises questions about their implications for young people, their caseworkers and evolving care trajectories. Although institutional assessments of young people have a historical heritage, research about their implications is lacking. The aim of the thesis is to explore young people’s and their caseworkers’ experiences of assessments in secure accommodations and their implications for young people’s care trajectories. Methods used are primarily repeated interviews with 16 young people during a period of two years and one interview with their caseworkers. Surveys about 85 youths, participatory observations and written assessments are also included. This thesis takes an interactionist approach and the material has been analysed with the main concept of care trajectory along with the concepts of self-presentation, total institution, institutional identity and texts as coordinators. The results are presented in four papers. The concluding analysis shows that assessments in secure accommodations can be divided into three elements: the practice, the text and the placement. These three elements have different implications for the young people and the caseworkers. For the young people the practice and the placement converge into an assessment universe that, with the text, intensifies their shaping of self-identity. The young people’s experiences are characterised by lack of control over their self-presentations, the present and the future. For the caseworkers, the practice has implications for their understanding of the young people’s individual troubles, the text for negotiating with other actors and the placement in their efforts to achieve change in the young people’s troublesome situations. The assessments’ implications for stability and foreseeability in the young people’s further care trajectories are limited. Moreover, the procedure of assessing young people in itself contains instability through involving several professionals in different parts of the assessment and decision-making process. Despite lack of stability, the thesis reveals that some young people experience the assessment as a place for self-development and where the course of the care trajectory changes to the better.

Les orientations ministérielles du Québec encouragent une pratique interprofessionnelle centrée sur le patient (ICP), au cours de la trajectoire de soins, pour soutenir les patients diagnostiqués d’un cancer. Cette pratique assure une meilleure communication entre les professionnels et la sécurité des patients, et améliore les soins et l'accès aux services (Santé Canada, 2010). Cependant, les études rapportent généralement les perceptions des professionnels en regard des soins et des services et informent sur les facteurs organisationnels, procéduraux et relationnels liés à cette pratique. Considérant l’importance de celle-ci, il semble nécessaire de la documenter selon les perceptions de patients, de proches et de professionnels dans un contexte réel de soins. L’étude avait pour but de décrire la pratique ICP au cours de la trajectoire de soins en oncologie. Pour soutenir cette description, l’adaptation du cadre de référence Person centred nursing framework (PCNF) de McCormack et McCance (2010) a été réalisée en incluant l’interprofessionnalité, telle que définie par Couturier (2009) et utilisée. Une étude qualitative de cas multiples a été réalisée auprès de deux équipes interprofessionnelles d’un centre hospitalier universitaire de la région de Montréal. L’échantillon (N=31) était composé de 8 patients, 3 proches, 18 professionnels et 2 gestionnaires. Vingt-huit entrevues ont été réalisées ainsi que 57,6 heures d’observation d’activités cliniques auxquelles participait le patient (ex., rendez-vous, traitement). Les résultats suggèrent que la pratique ICP des équipes est empreinte d’un dualisme de cultures (culture centrée sur le traitement versus culture davantage centrée sur le patient). De plus, les équipes étudiées ont présenté une pratique ICP fluctuante en raison de l’influence de nombreux facteurs tels le « fonctionnement de l’équipe », l’« environnement physique » et le « positionnement » des patients et des professionnels. Les résultats ont aussi suggéré que le déploiement des équipes de soins se fait à intensité variable au cours de la trajectoire. Il a été soulevé que les patients ont pu faire l’expérience d’une pratique ICP changeante, de bris dans la continuité des soins et de transition difficile entre les différentes périodes de la trajectoire. De plus, la description d’une pratique ICP souhaitée par les patients, leurs proches et les professionnels propose un accompagnement respectant le rythme du patient, sans prédominance des valeurs du professionnel ainsi qu’une assiduité dans la collaboration des membres de l’équipe. Cette étude suggère que les sciences infirmières peuvent ajouter aux connaissances interprofessionnelles actuelles en utilisant une perspective centrée sur le patient, perspective cohérente avec ses valeurs disciplinaires. De plus, de nombreuses pistes de réflexion sont proposées pour la pratique, la recherche, la gestion et la formation. / The ministerial orientations drawn up by the Quebec government promote the concept of interprofessional patient-centred practice (IPPC) throughout the care trajectory to support patients who have been diagnosed with cancer. That form of practice improves communication between professionals and patients’ sense of security, as well as improving care and access to services (Health Canada, 2010). However, studies generally report professionals’ perceptions of care and services and provide information on organizational, procedural and relationship factors connected to that practice. It is necessary to document this important practice based on the perceptions of patients, family members and professionals in a real context of care. This study was designed to describe IPPC practice throughout the trajectory of oncology care. The Person Centred Nursing Framework (PCNF) of McCormack and McCance (2010) was adapted by integrating interprofessionality, as defined by Couturier (2009), and used to support that description. A qualitative study of multiple cases was conducted with two interprofessional teams at a teaching hospital in the Montreal region. The sampling (N=31) consisted of 8 patients, 3 family members, 18 professionals and 2 managers. Twenty-eight interviews were conducted, as well as 57.6 hours of observation of clinical activities in which patients were participating (e.g. appointments, treatments). The results suggest that the teams’ IPPC practice reflected a duality of cultures (treatment-centred culture versus patient-centred culture). In addition, the IPPC practice of teams in the study fluctuated due to the influence of many factors, such as “how the team works,” “the physical environment” and the “stance” of patients and professionals. The results further suggested that the deployment of healthcare teams varied in intensity over the trajectory. The point was raised that patients experienced a variable IPPC practice, breakdowns in continuity of care, and difficult transitions between different periods in the trajectory. In addition, the description of the IPPC practice that patients, their family members and professionals would like to see suggests a form of accompaniment that would follow the patient’s own pace, without imposing professionals’ values, with assiduous collaboration from members of the team. This study suggests that nursing could advance current interprofessional knowledge by taking a patient-centred perspective, a perspective consistent with values in this discipline. In addition, many avenues for further reflection are put forward in terms of practice, research, management and training.