A qualitative descriptive analysis of nurses' perceptions of hospice care for deceased children following organ donation in hospice cool rooms (original) (raw)
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Nursing Children and Young People
Background Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but important element of hospice care. Aim The aims of the study were to identify the practices of staff providing care after death in UK children's hospices, notably their moving and handling practices and their management of physiological deterioration, and to produce recommendations that promote safe and consistent practice in moving and handling and in managing physiological deterioration after death in UK children's hospices. Method An electronic survey was sent to all 54 UK children's hospices. Free-text responses were analysed using deductive content analysis and used to add depth to the quantitative findings. Findings Out of 54 children's hospices, 33 responded to the survey. There were great variations in the way hospices delivered care after death, notably in length of stay, interventions and equipment. The lack of consistent practice grounded in evidence-based policy and training may mean that some staff experience higher levels of stress and anxiety than others and that some staff take risks when providing care after death, particularly to express empathy towards bereaved families. Conclusion Recommendations are made about moving and handling a child's body after death and managing its physiological deterioration. Hospices can use these recommendations to develop policy and training, standardise what is expected of staff and support practitioners in adequately caring for children after death.
Journal of Pain and Symptom Management, 2018
Context: Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs. Objective: To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community. Methods: A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot-tested and distributed to hospice nurses across a tristate region. Results: A total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting < 5 years of hospice experience (53.7%) and no pediatric hospice experience (49.4%). Those with pediatric hospice experience reported limited opportunities to maintain or build their skills, with the majority providing care to children several times a year or less (85.7%). Nurses reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life across all domains. Conclusion: Children with serious illness who receive care from local hospices often interface with nurses who lack training, experience, and comfort in the provision of palliative and hospice care to pediatric patients. These findings should inform future development and investigation of educational resources, training programs, and child-and family-centered policies to improve the delivery of palliative and hospice care to children in the community.
Pediatric Nurses' Perceptions of Obstacles and Supportive Behaviors in End-of-Life Care
American Journal of Critical Care, 2010
BackgroundEach year 55 000 children die in the United States, and most of these deaths occur in hospitals. The barriers and supportive behaviors in providing end-of-life care to children should be determined.ObjectiveTo determine pediatric intensive care unit nurses’ perceptions of sizes, frequencies, and magnitudes of selected obstacles and helpful behaviors in providing end-of-life care to children.MethodA national sample of 1047 pediatric intensive care unit nurses who were members of the American Association of Critical-Care Nurses were surveyed. A 76-item questionnaire adapted from 3 similar surveys with critical care, emergency, and oncology nurses was mailed to possible participants. Nurses who did not respond to the first mailing were sent a second mailing. Nurses were asked to rate the size and frequency of listed obstacles and supportive behaviors in caring for children at the end of life.ResultsA total of 474 usable questionnaires were received from 985 eligible responden...
2021
Children's hospices provide a range of services for babies, children and young people who have life-shortening conditions, including care after death in specialist 'cool bedrooms'. Caring for children after death is a challenging area of hospice care, with variation seen within, and between organisations. The study aims to identify current practices and to produce guidelines that promote safe practice in moving and handling and managing physiological deterioration of children after death. An electronic questionnaire was sent to all 54 British children's hospices; 33 responded (=62% of hospices). Variation in the way in which children's hospices delivered care after death was identified, in terms of the length of stay, care provision and equipment used, owing to demands of individual families and the experience and confidence of practitioners. Internal variation in practice can lead to practitioner anxiety, and risk-taking when providing care, particularly in the presence of family members. Practice recommendations have been made that reflect the practical demands of caring for a child's body after death; these have been split into two parts: moving and handling considerations and managing physiological deterioration. These recommendations should be used to support the development of policy and practice, allowing organisations to standardise staff expectations and to support practitioners when caring for children after death.
Experiences and expectations of nurses in caring for organ donors and their families
Revista da Escola de Enfermagem da U S P, 2015
Objective Understand the experiences and expectations of intensive care unit nurses in caring for organ donors and their families. Method Qualitative research, with a social phenomenological approach, conducted in 2013 with 20 nurses. Results The experiences of the nurses with the families of donors were represented by two categories: obstacles encountered and interventions performed in the care of the donors' families. The expectations of these professionals in caring for organ donors and their families were described in the category: care to save lives. Conclusion The study showed that the day-to-day work of intensive care nurses in their care of organ donors and their families is permeated with obstacles that interfere in the donation process. In light of this, their goal is to provide intensive care to deceased donors and humanized care to the families, to help family members agree to organ donation and enable organs to be made available for transplants.
Promoting Neonatal Staff Nurses' Comfort and Involvement in End-of-Life and Bereavement Care
2011
Background. Nurses who provide end of life and bereavement care to neonates and their families are potentially at risk for developing stress-related health problems. These health problems can negatively affect nurses' ability to care for their patients. Purpose. Nurses need to be knowledgeable about end of life and bereavement issues to provide quality care. This study sought to evaluate the effect of a bereavement seminar on the attitudes of nurses regarding end of life and palliative care of neonates. Design. A convenience sample of fourteen neonatal nurses completed a Bereavement/End of Life Attitudes about Care of Neonatal Nurses Scale after a bereavement seminar designed to provide information on end of life care. A pre-and posttest design with an intervention and control group was used to assess changes in nurse bereavement attitudes in relationship to comfort, role, and involvement. Results. After bereavement seminar, the seminar attendees had higher levels of comfort in providing end of life care than nurses in the control group ( = −0.214; = 0.04). Discussion. Nurses' comfort levels can be improved by attending continuing education on end of life care and having their thoughts on ethical issues in end of life care acknowledged by their peers.
Exploring family experiences of nursing aspects of end-of-life care in the ICU: A qualitative study
Intensive and Critical Care Nursing, 2016
The aim of this study was to examine the experience(s) of family with the nursing aspects of End-of-life care in the intensive care unit after a decision to end life-sustaining treatment, and to describe what nursing care was most appreciated and what was lacking. Method: A phenomenological approach including inductive thematic analysis was used. Twentysix family members of deceased critically ill-patients were interviewed within two months after the patient's death about their experiences with nursing aspects of end-of-life care in the intensive care unit. Findings: Most family members experienced nursing contribution to end-of-life care of the patient and themselves, especially supportive care. Families mentioned the following topics: Communication between intensive care nurses, critically ill patients and family; Nursing care for critically ill patients; Nursing care for families of critically ill patients; Preconditions. Families appreciated that intensive care nurses were available at any time and willing to answer questions. But care was lacking because families had for example, a sense of responsibility for obtaining information, they had problems to understand their role in the decision-making process, and were not invited by nurses to participate in the care.
BMC palliative care, 2016
Parents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the experiences of families receiving a nurse led pilot hospice at home programme and the experiences of healthcare professionals delivering and engaging with the programme. An exploratory, qualitative study was conducted, including telephone interviews with parents and focus groups and individual interviews with healthcare professionals. All parents of families who received the programme of care between June 2014 and September 2015 and healthcare professionals delivering and engaging with the programme were invited to participate. Seven parents participated in telephone interviews. Four focus groups took place, two with external stakeholders (18 participants in total), one with in-patient hospice staff (13 participants) and one with the hospice at home team (...