Hospice care

Aims and objectives: To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom.

Background: In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable.

Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with life-limiting conditions, in particular. Interpretative phenomenological analysis was used as the methodological framework for the study. Seven bereaved grandparents participated in this study. Semistructured, individual, face-to-face interviews were conducted.

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years.

Background: Family caregivers need to be supported in caring for patients at the end of life, but practical tools to assess their support needs have been missing in China. So this study aimed to culturally adapt and validate the Carer Support Needs Assessment Tool (CSNAT). Methods: Cross-cultural adaptation of the original CSNAT for a Chinese setting was performed according to Brislin’s translation guidelines. A pilot study was conducted with 15 Chinese family caregivers of cancer patients receiving hospice home care and 5 medical staff.

End-of-life assessments aim to help dying patients and their families plan clinical interventions in advance and prepare them for a peaceful end of life, in which the patient accepts life and death, and the family accepts the patient's departure. It is important to assess whether death is imminent within a few days, because critical hospice care is provided intensively during that period.

Purpose: This pilot study aimed to examine the influence of death counseling on perceptions, preparedness, and anxiety regarding death and dying among family caregivers of hospice patients. Methods: Death counseling developed based on the SPIKES model was provided to 37 family caregivers in a hospice and palliative care unit. Perceptions, preparedness, and anxiety regarding death were assessed with a self-administered structured questionnaire, and participants' scores before and after counseling were compared using the paired t-test.

Objective: The objective of this study was to understand the conceptualisation and development of a novel way of providing end‐of‐life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. Methods: A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information.

Objectives Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers. Methods A longitudinal study was performed in five hospitals in Taipei, Taiwan.

This study aimed to compare perceptions of spiritual care among patients with life-threatening cancer, their primary family caregivers, and hospice/palliative care nurses. Data were collected using both structured and unstructured approaches. Structured questionnaire data were examined using statistical analysis methods, and unstructured data were examined using content analysis to compare the 3 participant groups.

Background: Despite a majority of persons receiving hospice care in their homes, there are gaps in understanding how to facilitate goals of care conversations between persons with heart failure and healthcare providers. Aim: To identify barriers and facilitators which shape goals of care conversations for persons with heart failure in the context of home hospice. Design: A qualitative descriptive study design was used with semi-structured interviews.