RESUMEN
BACKGROUND: Delirium is a distressing condition often experienced by hospice in-patients. Increased understanding of current multidisciplinary care of delirium is needed to develop interventions in this setting. AIM(S): To explore hospice staff and volunteers' practice, its influences and what may need to change to improve hospice delirium care. DESIGN: Qualitative interview study using behaviour change theory from a critical realist stance. SETTING/PARTICIPANTS: Thirty-seven staff, including different professional groups and roles, and volunteers were purposively sampled from two in-patient hospices. RESULTS: We found that participants' practice focus was on managing hyperactive symptoms of delirium, through medication use and non-pharmacological strategies. Delirium prevention, early recognition and hypoactive delirium received less attention. Our theoretically-informed analysis identified this focus was influenced by staff and volunteers' emotional responses to the distress associated with hyperactive symptoms of delirium as well as understanding of delirium prevention, recognition and care, which varied between staff groups. Non-pharmacological delirium management was supported by adequate staffing levels, supportive team working and a culture of person-centred and family-centred care, although behaviours that disrupted the calm hospice environment challenged this. CONCLUSIONS: Our findings can inform hospice-tailored behaviour change interventions that develop a shared team understanding and engage staff's emotional responses to improve delirium care. Reflective learning opportunities are needed that increase understanding of the potential to reduce patient distress through prevention and early recognition of delirium, as well as person-centred management. Organisational support for adequate, flexible staffing levels and supportive team working is required to support person-centred delirium care.
Asunto(s)
Delirio , Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Humanos , Cuidados Paliativos/psicología , Investigación Cualitativa , Voluntarios , Delirio/terapiaRESUMEN
AIM: To establish whether respite care addresses the needs of palliative care service users and carers. BACKGROUND: Respite care is often described in UK policy and guidance as a key need to providing support for this group and yet little is known about it and there is a lack of research to support its efficacy. DESIGN: The approach was qualitative and the methodology was interpretive. The method used was constructivist grounded theory. METHODS: Data collection was carried out by unstructured informal interview with three couples and two bereaved carers who had experienced hospice respite care. RESULTS: Findings showed that respite care is valued by palliative care service users and carers although there are some fundamental tensions in service models which limit its potential. CONCLUSION: A reframing of respite care as an empathic response within a new palliative care approach is proposed. Within this, the centrality of the relationship is reinforced.
Asunto(s)
Cuidadores , Necesidades y Demandas de Servicios de Salud , Cuidados Intermitentes , Esposos , Actitud Frente a la Salud , Femenino , Teoría Fundamentada , Cuidados Paliativos al Final de la Vida , Enfermería de Cuidados Paliativos al Final de la Vida , Humanos , Masculino , Esclerosis Múltiple/enfermería , Enfermedad de Parkinson/enfermería , Enfermedad Pulmonar Obstructiva Crónica/enfermería , Investigación Cualitativa , Apoyo SocialRESUMEN
BACKGROUND: Dove House Hospice serves a population of about 600,000 covering Hull and East Riding. About 42% of people in Hull and East Riding die in their usual residence. Dove House Hospice's vision is to provide excellent specialist palliative care and support to patients, their families and carers in the locality. Despite excellent services provided, there was evidence of lack of awareness. A project, using a community engagement approaches, was therefore developed to close this gap. AIM: Raise awareness about death, dying, loss and care; and services provided by Dove House Hospice Improve partnerships between Dove House Hospice and the community. Increase social supports to those who experiences death, dying, loss and caregiving. APPROACH: Two postcode areas, namely Cottingham and Bransholme, were initially selected for two-week community engagement activities. The key approaches used were: direct engagement with the public, participation in community activities, engagement with local primary health care services and distribution of information leaflets. Evaluation approach: Use of pre and post activities questionnaire and feedback meetings with key community members. RESULTS: Leaflets were distributed to a total of about 18,000 addresses. Immediate result include: Increased donation, increased application for volunteering and increased referrals. Community involvement in end of life care waits to be evaluated. CONCLUSION: This is an on-going project. Early indications are that there has been improved awareness of the hospice services and interest in the hospice's activities. The project has also contributed to the hospice being included in the pathfinder charter community.
RESUMEN
Over the coming years, as an ageing population with multiple chronic illnesses increases, the number of carers and paid carers is set to decrease. There is, therefore, an urgent need to understand what types of services are most supportive in helping to sustain caring relationships. Respite care is frequently mentioned as a key factor in supporting family carers and improving their quality of life but there is a lack of research to support its efficacy. This paper will present a conceptual map of respite care in order to promote a greater understanding of the multiple tensions that the palliative care respite literature reveals. As learning more about carer's needs and the complexities of the caring relationship develops, it is an appropriate time to map the key messages from the literature to help us understand what respite care does actually mean to palliative care service users and carers.