RESUMEN
This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person's well-being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of the moral issues in the care for people with dementia is centred on responsibilities; how do people conceive and determine their responsibilities towards one another? To investigate this issue we use the theoretical perspective of Margaret Walker. She states that ideas about identity play a crucial role in patterns of normative expectations with regard to the distribution of responsibilities in daily practices of care. The results of this study show how the identity of a family-member is put under pressure and changes during her loved one's illness that leads to difficulties and misunderstandings concerning the issue of responsibility These results offer an insight into the complexities of actual practices of responsibility and highlight the importance for those caring for people with dementia of attending carefully to how they see themselves and how they see other people involved (Who am I? Who do I want to be for the other?). Answers to such questions show what people expect from themselves and from one another, and how they at any rate, are distributing responsibilities in a given situation. Professional caregivers should take into account that family members might have different ideas about who they are and consequently about what their responsibilities are.
Asunto(s)
Cuidadores/psicología , Demencia , Familia , Estrés Psicológico/etiología , Femenino , Humanos , Responsabilidad Social , Estrés Psicológico/psicologíaRESUMEN
OBJECTIVE: Developing good care for dying people is important nowadays. Normative expectations about what could be considered as a good death are inextricably bound up with this issue. This article aims to offer an insight in the way terminally ill patients talk about death and dying and how they refer to current western normative expectations about a 'good' death. METHOD: Thirteen patients with a life expectancy of less than 3 months living at home were interviewed about how they experienced the last phase of their lives. The analysis focused on the way patients tell their personal stories by using normative expectations that are part of a broader cultural western framework. RESULTS: Five categories of normative expectations were discriminated in the stories of patients: awareness and acceptance, open communication, living one's life till the end, taking care of one's final responsibilities and dealing adequately with emotions. CONCLUSIONS: The results of this study show that in the search of a good death people show a clear diversity in their way of referring to as well as in dealing with normative expectations that are part of the current cultural paradigm. PRACTICE IMPLICATIONS: Professional caregivers should be responsive to how a patient deals with and relates to normative expectations about a good death and should support patients in their individual process of dying an 'appropriate death'.
Asunto(s)
Adaptación Psicológica , Actitud Frente a la Muerte , Actitud Frente a la Salud , Valores Sociales , Cuidado Terminal , Enfermo Terminal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Actitud del Personal de Salud , Concienciación , Cuidadores/psicología , Conducta de Elección , Comunicación , Familia/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Neoplasias/psicología , Países Bajos , Investigación Metodológica en Enfermería , Defensa del Paciente , Investigación Cualitativa , Apoyo Social , Encuestas y Cuestionarios , Cuidado Terminal/organización & administración , Cuidado Terminal/psicologíaRESUMEN
It is not uncommon that nurses are unable to meet the normative expectations of chronically ill patients. The purpose of this article is to describe and illustrate Walker's expressive-collaborative view of morality to interpret the normative expectations of two women with multiple sclerosis. Both women present themselves as autonomous persons who make their own choices, but who also have to rely on others for many aspects of their lives, for example, to find a new balance between work and social contacts or to find work. We show that their narratives of identity, relationship and value differ from the narratives that others use to understand and identify them. Since identities, relationships and values give rise to normative expectations, in both cases there is a conflict between what the women expect of their caregivers and vice-versa. The narratives also show that two similar persons with multiple sclerosis may need very different care. This implies that nurses caring for such persons should listen carefully to their stories and reflect on their own perceptions of self.
Asunto(s)
Actitud Frente a la Salud , Necesidades y Demandas de Servicios de Salud/ética , Esclerosis Múltiple/enfermería , Esclerosis Múltiple/psicología , Relaciones Enfermero-Paciente/ética , Adulto , Personas con Discapacidad/psicología , Femenino , Humanos , Persona de Mediana Edad , Narración , Países Bajos , Rol de la Enfermera , Apoyo SocialRESUMEN
This article describes the results of a grounded theory study among terminally ill patients (with a life expectancy of less than three months) at home (n = 13, aged 39-83). The most commonly recurring theme identified in the analysis is 'directing', in the sense of directing a play. From the perspectives of patients in our study, 'directing' concerns three domains: 1) directing one's own life; 2) directing one's own health and health care; and 3) directing things related to beloved others (in the meaning of taking care of beloved ones). The patient's directing is affected by impeding and facilitating circumstances: the patient's needs and problems in the physical, psychological and existential/spiritual domain, and the support by family members and providers. Supporting patients and families, stimulating the patients' directing, giving attention to all domains of needs and counselling patients' families in the terminal phase are issues that need attention and warrant further investigation.
Asunto(s)
Evaluación de Necesidades , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Enfermo Terminal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Cuidadores/psicología , Femenino , Necesidades y Demandas de Servicios de Salud , Humanos , Masculino , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
This paper reports on a grounded theory interview-based study with 13 family members aged 28-80 years caring for terminally ill people at home (with a life expectancy of 3 months or less) in the Netherlands. The project was approved by the ethics committee of the Maastricht University Hospital. The aim of this study was to explore the experiences of family caregivers, their needs for home care, and which health services they receive. Data were analysed using the constant comparative method. 'Vulnerability' was identified as the core category. Caring for a terminally ill person at home requires continuous balancing between care burden and capacity to cope. Whether or not the carer will succeed in keeping in optimum balance is dependent on a number of factors impinging on the caregiver's vulnerability. Care burden, restricted activities, fear, insecurity, loneliness, facing death, lack of emotional, practical and information-related support were identified from the data as factors having the potential to increase the caregiver's vulnerability, and may be risk factors for fatigue and burnout. Continuing previous activities, hope, keeping control, satisfaction and good support are factors which may decrease the caregiver's vulnerability, and may protect against fatigue and burnout. The experiences of the caregivers in our study showed that the support from informal and professional caregivers was not sufficient. Education and practical tools may make professionals more sensitive for the vulnerable position of family caregivers, even when these caregivers do not show their vulnerability.