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Background: Staff-client relationships impact the quality of support and life of people with severe to profound intellectual disabilities and challenging behavior, but are challenging to build due to clients' intense, complex and varying support needs. The present study explores the perspectives of professionals and relatives on what affects these interpersonal relationships. Method: 17 professionals and 11 relatives participated in focus groups and interviews. Data collection and analysis was performed in collaboration with a co-researcher. Data were synthesized thematically. Results: Interpersonal relationships constituted equivalence, striving for mutual understanding, trust and exploring clients' potential. The combination of staff characteristics (enthusiasm/passion, patience, resilience, creativity/humor, flexibility) and expertise (knowledge, vulnerability/sincerity, self-reflection) enabled staff to build these relationships. The importance of involving relatives was addressed. Contextual influences included the team (cooperation, flexibility, culture), organization (cooperation, boundary conditions) and setting (predictability, interior/atmosphere). Conclusions: The findings make practical knowledge explicit and scientifically underpinned for this specific population.
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Stress has a major negative impact on the development of psychopathology and contributes to the onset of adverse physical conditions. Timely recognition and monitoring of stress-related problems are therefore important, especially in client populations that are more vulnerable to stress, such as people with mild intellectual disabilities (MID). Recent research on the use of physiological measures to assess stress levels emphasize that, in addition to these measures, self-report instruments are necessary to gain insight into the individual perception and impact of stress on daily life. However, there is no current overview of self-report stress measures that focus on the experience of stress in the present moment or in daily life. To provide an overview of the existing self-report stress measures for clinicians and researchers, a scoping review was conducted. In addition, to advise clinical professionals on the use of self-report measures of stress for people with MID, the results of an expert consultation were used to refine the preliminary findings. A systematic scoping literature search resulted in a total of 13 self-reported stress measures that met the final inclusion criteria, of which three were developed specifically for assessing stress in adults with MID (GAS-ID, LI, and SAS-ID). For each included self-report stress measure, the psychometric quality, assessment procedure, and suitability for adults with MID were reported. These were supplemented by the findings from the expert consultation. Implications for clinical practice on the use of self-report stress measures, particularly for people with MID, are discussed. Recommendations for future research and development are given.
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BACKGROUND: Self-determination is an important factor in improving the quality of life of people with moderate intellectual disabilities. A focus on self-determination implies that restraints on the freedom of people with intellectual disabilities should be decreased. In addition, according to the Dutch Care and Coercion bill, regular restraints of freedom, such as restrictions on choice of food or whom to visit, should be discouraged. Such restraints are only allowed if there is the threat of serious harm for the clients or their surroundings. RESEARCH QUESTION: What do support staff consider as restraints on freedom and how do they justify these restraints? RESEARCH DESIGN: In this study, data were collected by semi-structured interviews. Participants and research context: Fifteen support staff working with clients with moderate intellectual disabilities were interviewed. All participants work within the same organisation for people with intellectual disabilities in the Eastern part of the Netherlands. Ethical considerations: The study was conducted according to good scientific inquiry guidelines and ethical approval was obtained from a university ethics committee. FINDINGS: Most restraints of freedom were found to be centred around the basic elements in the life of the client, such as eating, drinking and sleeping. In justifying these restraints, support staff said that it was necessary to give clarity in what clients are supposed to do, to structure their life and to keep them from danger. DISCUSSION: In the justification of restraints of freedom two ethical viewpoints, a principle-guided approach and an ethics of care approach, are opposing one other. Here, the self-determination theory can be helpful, while it combines the autonomy of the client, relatedness to others and the client's competence. CONCLUSION: Despite the reasonable grounds support staff gave for restraining, it raises the question whether restraints of freedom are always in the interest of the client.
Asunto(s)
Actitud del Personal de Salud , Discapacidad Intelectual/enfermería , Personal de Enfermería/psicología , Autonomía Personal , Adulto , Ética en Enfermería , Femenino , Humanos , Masculino , Persona de Mediana Edad , Personal de Enfermería/estadística & datos numéricos , Teoría Psicológica , Adulto JovenRESUMEN
This article gives an overview of the moral problems experienced and described by nurses working in a dialysis unit in the Netherlands. The nurses raised a wide variety of issues that they considered were moral problems, which were grouped into seven topics. A selection of cases are described, one of which is analysed using the Nijmegen method of ethical case deliberation. This method facilitates practical approaches to the different types of moral problems encountered. The argument is made that, owing to their specific moral position and responsibility, nurses' contribution to ethical reflection in ward discussions should be valued more. All caregivers involved are indispensable in developing a basis for well-reasoned decisions when deliberating about moral problems.
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Toma de Decisiones/ética , Análisis Ético/métodos , Principios Morales , Diálisis Renal/ética , Diálisis Renal/enfermería , Humanos , Países BajosRESUMEN
Working as a multidisciplinary or interdisciplinary team is an essential condition to provide good palliative care. This widespread assumption is based on the idea that teamwork makes it possible to address the various needs of the patient and family more effectively. This article is about teamwork and about the effectiveness of teams working in palliative care. First, the nature of teamwork will be highlighted. Second, attention will be paid to team effectiveness; what exactly is team effectiveness and with what parameters can it be measured? Third, the nature of moral reflection and moral deliberation in palliative care will be highlighted. A concrete process of moral deliberation will be described. In conclusion, we shall argue that the capacity for moral reflection is a feature of a team working effectively.
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Principios Morales , Cuidados Paliativos , Grupo de Atención al Paciente/organización & administración , Humanos , Países BajosAsunto(s)
Toma de Decisiones , Cuidados Paliativos , Ética Médica , Humanos , Autonomía Personal , Revelación de la VerdadRESUMEN
The development of palliative care is increasing the interest in the moral problems that arise in the practice of palliative care. It is not clear how caregivers deal with these moral problems. In this article, we focus on the decision whether to continue treatment or to withhold it, and discuss the way caregivers deal with this question amongst themselves and in communication or consultation with the patient. We look at moral deliberation, the process of identifying the crucial arguments for this decision in palliative care.
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Actitud del Personal de Salud , Toma de Decisiones en la Organización , Principios Morales , Cuidados Paliativos , Privación de Tratamiento/ética , Adaptación Psicológica , Comunicación , Familia/psicología , Medicina Familiar y Comunitaria , Necesidades y Demandas de Servicios de Salud , Hospitales para Enfermos Terminales , Hospitales Generales , Hospitales Universitarios , Humanos , Consentimiento Informado/ética , Consentimiento Informado/psicología , Países Bajos , Casas de Salud , Cuidados Paliativos/ética , Cuidados Paliativos/organización & administración , Cuidados Paliativos/psicología , Defensa del Paciente/educación , Defensa del Paciente/psicología , Educación del Paciente como Asunto/ética , Participación del Paciente/psicología , Relaciones Profesional-Paciente , Investigación Cualitativa , Calidad de Vida/psicología , Encuestas y CuestionariosRESUMEN
With the growth and development of palliative care, interest in pastoral care, spirituality, and religion also seems to be growing. The aim of this article is to review the topic of pastoral care, spirituality, and religion appearing in the journals of palliative care, between January 1984 and January 2002.
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Cuidados Paliativos , Cuidado Pastoral , Publicaciones Periódicas como Asunto/estadística & datos numéricos , Edición/estadística & datos numéricos , Religión , Espiritualidad , Adaptación Psicológica , Actitud Frente a la Muerte , Bibliometría , Salud Holística , Humanos , Moral , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/estadística & datos numéricos , Cuidado Pastoral/educación , Cuidado Pastoral/métodos , Publicaciones Periódicas como Asunto/tendencias , Edición/tendenciasRESUMEN
Clarifying and analysing moral problems arising in the practice of palliative care was the objective of participatory observations in five palliative care settings. The results of these observations will be described in this contribution. The moral problems palliative caregivers have to deal with in their daily routines will be explained by comparison with the findings of a previously performed literature study. The specific differences in the manifestation of moral problems in the different palliative care settings will be highlighted as well.
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Ética Clínica , Obligaciones Morales , Manejo del Dolor , Cuidados Paliativos/ética , Actitud Frente a la Muerte/etnología , Toma de Decisiones/ética , Humanos , Inutilidad Médica , Neoplasias/complicaciones , Neoplasias/terapia , Servicio de Oncología en Hospital/ética , Dolor/etiología , Participación del Paciente , Investigación Cualitativa , Cuidado Terminal/éticaAsunto(s)
Ética Médica , Cuidados Paliativos/ética , Cuidados Paliativos/organización & administración , Actitud Frente a la Muerte , Política de Salud , Humanos , Evaluación de Necesidades , Países Bajos , Objetivos Organizacionales , Defensa del Paciente , Filosofía Médica , Desarrollo de Programa , Sociedades MédicasRESUMEN
With the growth of palliative care services, interest in moral issues also seems to be growing. The controversial issue of euthanasia significantly provokes moral reflection on the care for dying patients. This article presents an analysis of the moral issue of euthanasia as it is discussed by the palliative care community in the professional journals of palliative care. Initially, the analysis will focus on describing the characteristics of the publications about euthanasia and the attitudes expressed in the articles towards this practice. Second, attention will be paid to the description of the uses of the term euthanasia in the various articles and also how frequently such uses occur. Third, the various arguments in support for or against a place for euthanasia in palliative care will be discussed.