No description available.

No description available.

L'accompagnement de la fin de vie est une clinique qui s'est développée en France, avec l'émergence des services de soins palliatifs, à la fin des années 80. Alors que la mort avait été laissée pour compte pendant plusieurs décennies, des professionnels de santé (dont des psychologues, profession toujours en construction à l’époque) ont ainsi commencé à accompagner ce temps de passage. Cette étude pose une question centrale : combien de temps un psychologue peut-il exercer dans un service d'accompagnement à la mort sans être mis en difficulté ? Cette interrogation est devenue un point de départ vers d’autres, telles que : pourquoi et comment exercer comme psychologue en soins palliatifs et en continuité, quelle formation adopter pour soutenir une telle pratique ? L'hypothèse générale qui, dès lors, a soustendu notre recherche, est que la clinique de la fin de vie est une pratique éprouvante qui nécessiterait des ressources encore à découvrir ainsi qu'une capacité à s'interroger sur son expérience de vie, afin d'en tirer un savoir expérientiel réflexif pour assumer d'accompagner au plus près et sans en être trop affecté, la personne qui va mourir. Dans cet objectif j'ai effectué, avec 4 psychologues exerçant ou ayant exercé en soins palliatifs, des entretiens « cliniquesdialogiques ». Ceux-ci, par leur spécificité, permettent de faire émerger des espaces de co-construction de savoir. Ce travail interroge la notion de formation tout au long de la vie – et jusqu’au bout. Car il apparaît que la mort vient mettre en lumière différentes temporalités et différents espaces de savoirs à explorer. / End-of-life care and support is a clinical practice which developed in France with the emergence of palliative care services at the end of the 80s. Whilst death itself had been ‘set-aside’ for several decades, health professionals (including psychologists, whose profession was still evolving at the time) began to support patients during the final phase of life. This study raises a major issue: how long is a psychologist able to practice in an ‘end-of life’ department without suffering the consequences of dispensing this care him/herself? This central question gave rise to others such as: what is the rationale behind providing such support as a psychologist in the domain of palliative care and how do we go about it? And in the longer term which type of training would be best adapted to enable us to carry out this type of care. The underlying hypothesis which under-pins our research is that working in an ‘end-of-life’ care service is a highly demanding practice which requires resources which have yet to be defined as well as the capacity to ask oneself questions based on our own life experiences, in order to derive from it a reflexive and pragmatic attitude so that we can undertake this support in the best conditions and without being too strongly affected by the patient who is nearing death. With this as my objective I carried out, along with 4 other psychologists who are, or who have practiced in palliative care services, some ‘clinical-dialogical’ interviews. The latter, by their specific nature, facilitate the development of collaborative thinking and knowledge. This study raises the question of the importance of life-long-learning - and that to the ultimate end. It would appear that the notion of death itself focuses attention on a variety of temporalities and areas of knowledge which merit exploration.

This thesis is focused upon experiences of living with life limiting conditions. It aimed to gain accounts from people who, potentially, had palliative care needs, to highlight a range of experiences of their lives and conditions and to identify what these service user needs might be. Establishing any contribution of involving service users in the research and any social or environmental factors that may shape or influence experiences of living with a life limiting condition were further aims. To this end it was pertinent to consider if the social model of disability could contribute new perspectives to palliative care research. This qualitative research utilised a participatory approach. Service users were intrinsically involved in the research within the Service User Research Advisory Group (SURAG). My separate study group comprised of twenty-five participants, sixteen women and nine men, aged thirty eight to eighty five years. Fourteen participants had a cancer diagnosis, ten had non-cancer conditions and one participant had both cancer and another non-cancer condition. Ten participants took part in individual face-to-face interviews, twelve in small discussion groups and three were studied purely in a period of participant observation. Thematic analysis was conducted collectively with SURAG members and identified eight different but interconnected themes. Themes of diagnosis, fear, anger/frustration, grief, relationships, services, difference/individuality and independence/dependence were identified. As well as being a distinct theme in its own right, independent/dependenwt as in fact a central and overarching theme with a negotiation between independence and dependence being evident across all themes. The theme of services is presented as a theme in its own right. The participatory approach revealed themes unlikely to have been identified by myself as a sole researcher. It also led to service user outcomes being identified and largely positive appraisals of their involvement in the research.

No description available.

This study focuses on the current issues regarding the provision of clinical supervision for palliative care nurses. NICE (2004) recommendations stated that the task of supervision should be undertaken by „Level 4‟ practitioners such as clinical psychologists or psychiatrists. Palliative care nurses are recognised to experience high levels of stress due to the emotionality of their role. However there appears to be little understanding of how they cope with this aspect of their role. Self care is promoted as a useful strategy; however this is thought to have limitations due to the questionable ability for an individual to objectively and accurately assess their own mental and emotional state. Clinical supervision has been attempted with palliative care nurses but this appears to focus on the internal world of the nurse rather than the interaction between nurse and patient. This study employed a staff survey, including a demographic questionnaire, the Copenhagen Burnout Inventory and the General Health Questionnaire, followed by individual interviews and focus groups analysed using thematic content analysis. Participants were recruited from two teams within one cancer network. Results showed that there was an incidence of both high stress and psychiatric morbidity within the sample. Provision of clinical supervision was shown to be inconsistent across the two teams. Although there was recognition that clinical supervision would be beneficial, there was a certain amount of confusion regarding the concept as well as suspicion about the „real‟ agenda. These factors appeared to work together to produce a situation in which clinical supervision was not being provided or accepted in a way that would maximise its efficacy as its application was inconsistent with the theoretical basis. In conclusion, in order to better support palliative care nurses with the difficult aspects of their role, it was suggested that a more structured and consistent picture of clinical supervision was provided. This would enhance their practice, support their emotional needs and protect the patients under their care.

No description available.

The study sought to research and develops a universal palliative care measurement tool that will track the performance of informal caregivers to dying persons across the diversity of the South African cultural and religious groupings. The major inferences drawn from this study was that a generic domain, sub-items and intervals could be identified for palliative care; that a reliable measurement tool could be developed and that outcomes of care programs for dying persons in terms of effectiveness and efficiency could be numerically quantified. With the ability to measure now been realised, the ability to manage the outcomes became the new challenge. / Nursing Sciences / M.A. (Health Studies)

The study sought to research and develops a universal palliative care measurement tool that will track the performance of informal caregivers to dying persons across the diversity of the South African cultural and religious groupings. The major inferences drawn from this study was that a generic domain, sub-items and intervals could be identified for palliative care; that a reliable measurement tool could be developed and that outcomes of care programs for dying persons in terms of effectiveness and efficiency could be numerically quantified. With the ability to measure now been realised, the ability to manage the outcomes became the new challenge. / Nursing Sciences / M.A. (Health Studies)

Une évolution récente de la loi a rendu les directives opposables juridiquement et ainsi plus « contraignantes » pour les équipes médicales. Or dans la pratique des soins palliatifs, les soignants sont souvent confrontés à un refus des patients de se prononcer sur un choix anticipé concernant les décisions de fin de vie. À travers une étude qualitative par entretiens semi dirigés et une analyse textuelle du discours de 12 patients en situation palliative et 10 de leurs proches, nous avons étudié les freins et des leviers à la rédaction des directives anticipées chez ces patients. Au-delà du passage à l’écrit, c’est l’élaboration des DA elles-mêmes qui semble difficile chez ces patients. L’impossibilité d’imaginer, de conceptualiser le temps du mourir, bien que le pronostic soit connu, conduit à une incapacité à rédiger des DA. Un des enjeux de ces DA au-delà de leur rédaction, serait de les utiliser comme un médium de communication entre patients ou futurs patients et équipe médicale. Le partage d’une éventuelle décision concernant la fin de vie avec les proches ainsi qu’avec les équipes médicales, apparait comme indispensable. Ces échanges s’inscrivent dans un processus dynamique tenant compte de la temporalité du patient mais aussi des étapes évolutives de la pathologie, garantissant ainsi une meilleure adéquation entre situation vécue et DA. Les DA sous la forme de documents écrits ne sont pas conformes aux souhaits des patients et des proches que nous avons interrogés. La notion de discussions anticipées et d’« advance care planning » associant l’entourage, semble être plus approprié aux attentes des patients en situation palliative. Pour les proches, des discussions anticipées régulières en dehors de tout contexte médical pathologique paraissent un moyen adapté au recueil de leurs souhaits et valeurs. D’un acte individuel de rédaction, reflet de l’expression de l’autonomie de l’individu, nous devrions tendre vers une approche plus systémique. / An evolution of the law is undertaken in order to make advance directives judiciously enforceable and thus made more binding for the medical teams. However, in the practice of palliative cares, the nursing teams are often confronted to a refusal from the patients when they have to make an anticipated choice concerning the end of their life. Through a qualitative study by semi-directed interviews and a textual analysis of the speech of 12 patients in palliative situation and 10 of their relatives, we studied the brakes and levers in the drafting of advance directives in these patients. Beyond the transition to writing of directives, it is the elaboration of the ADs itself that is seemingly difficult for patients in a palliative situation. The impossibility of imagining or conceptualizing the time of death, although the prognosis is known, leads to an inability to write ADs. One of the challenges of these ADs, beyond their actual writing, would be to use them as a communication medium between patients or future patients and the medical team.The sharing of a possible end-of-life decision with relatives as well as with the medical teams, appears essential. These exchanges are part of a dynamic process taking into account the temporality of the patient but also the various evolutionary stages of the disease thus ensuring a better match between an experienced situation and ADs. ADs in the form of written documents do not conform to the wishes of the patients and relatives we interviewed.For relatives, regular early discussions outside of any pathological medical context seem to be a suitable way of collecting their wishes and values. The notion of anticipatory discussions and « advance care planning » associating the entourage, would appear to be more in line with the expectations of patients in a palliative situation. From an individual act of writing, reflecting the expression of autonomy of the individual, we should tend towards a more systemic approach.