Family-Centered Culture Care: Touched by an Angel
ethics; mental stress; morality; psychology; religion; attitude to death; child; cultural anthropology; empathy; ethnology; family nursing; Hinduism; human; human relation; Impatiens; infant; newborn; nursing staff; Touch; treatment refusal
An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person's worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family's collective Indian Hindu worldview and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses' well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society's views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents' right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm.
Hernandez JA
Journal of Clinical Ethics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Archives of Disease in Childhood
2023
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</a>
Neonatal Palliative Care: Assessing the Nurses Educational Needs for Terminally Ill Patients
Nursing Staff; Palliative Care; Child; Cross-Sectional Studies; Education; Nursing; Female; Human; Infant; Newborn; Male; Palliative Care; Surveys and Questionnaires; Terminally Ill
BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative care for neonatal children is a lack of training for nurses. Aim: The aim of this research is to investigate the experiences of nurses who provide care for neonates who are terminally ill as well as their educational requirements for neonatal palliative care. METHOD: A cross-sectional descriptive study was conducted among 200 nurses working in a tertiary center providing care for terminally ill neonates in Saudi Arabia. Data was collected from using Neonatal Palliative Care Questionnaire (QNPC) from January 2021 to March 2021. RESULTS: Two hundred nurses were surveyed (the response rate was 79%). The mean age of the 158 participants was 35.67 (standard deviation (SD): 7.43), and the majority were female (151; 95.6%). The majority were bachelor's holders (119; 75.3%), with more than 5 years of experience in providing care for neonates (100; 63.3%). Most of the participants reported not receiving any education about palliative care (115; 72.8%). Nurses reported a moderate level of experience in all areas of neonatal palliative care. The total mean score of palliative care experiences of neonates was 3.42 (SD: 1.35). However, the majority of nurses reported little experience discussing the transition period to palliative care for neonates 2.95 (SD: 1.93), the discussion of code status (DNR) during terminal illness of neonates 3.11 (SD: 1.54) and spiritual support 2.90 (SD: 1.55). CONCLUSION: The assessment of the fundamental skills of neonatal palliative care by nurses was insufficient. To enhance the quality of care, it is crucial to incorporate education on neonatal palliative care into programs for nursing staff development.
Khraisat OM; Al-Bashaireh AM; Khafajeh R; Alqudah O
PLoS One
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1371/journal.pone.0280081" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0280081</a>
Limitation of Futile Therapy in the Opinion of Nursing Staff Employed in Polish Hospitals-Results of a Cross-Sectional Study
Attitude of Health Personnel; Nursing Staff; Adult; Cesarean Section; Child; Cross-Sectional Studies; Human; Medical Futility; Poland; Quality of Life; Surveys and Questionnaires
The debate on limiting futile therapy in the aspect of End of Life (EoL) care has been going on in Poland over the last decade. The growing demand for EoL care resulting from the aging of societies corresponds to the expectation of a satisfactory quality of life and self-determination. The authors designed a cross-sectional study using a newly designed questionnaire to assess the opinions of 190 nurses employed in intensive care units (ICUs) on futile therapy, practices, and the respondents' approach to the issue. The problem of futile therapy and its clinical implications are known to the nursing community. Among the most common reasons for undertaking futile therapy in adult patients, the respondents declared fear of legal liability for not taking such actions (71.58%), as well as fear of being accused of unethical conduct (56.32%), and fear of talking to the patient/patient's family and their reaction (43.16%). In the case of adult patients, the respondents believed that discontinuation of futile therapy should be decided by the patient (84.21%), followed by a doctor (64.21%). As for paediatric patients, two-thirds of the respondents mentioned a doctor and a court (64.74% and 64.21%, respectively). Overall, 65.26% of the respondents believe and agree that the comfort of the patient's last days is more important than the persistent continuation of therapy and prolonging life at all costs. The presented results clearly show the attitude of the respondents who defend the patient's dignity and autonomy.
Damps M; Gajda M; Kowalska M; Kucewicz-Czech E
International Journal of Environmental Research and Public Health
2022
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<a href="http://doi.org/10.3390/ijerph192416975" target="_blank" rel="noreferrer noopener">10.3390/ijerph192416975</a>
Implementing a Palliative Care Education Program in the NICU and Why It Is so Important: A Literature Review
Infant; Neonatal Palliative Care; Family; Nursing Staff; Anxiety; educational program; end-of-life care; Infant; neonatal; Palliative Care; Newborn Humans Intensive Care Units
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one. Neonatal staff are not educated or prepared to provide end-of-life care (EOLC) and support to family members. There is a lack of literature that looks at parents' perception of EOLC and the potential benefit that proper education may have had on their experience. Methods: Sixteen articles were reviewed, including 7 cohort studies, 5 expert opinions, 1 experimental trail, 1 case-controlled study, 1 literature review, and 1 case study. Conclusion: Implementation of a palliative care education program can provide the necessary tools for neonatal staff to provide EOLC. This education can reduce the stress and anxiety that staff feel about EOLC. With proper education, the neonatal staff can then provide the necessary support for family members. Relevance to Clinical Practice: EOLC is part of all NICUs, and neonatal staff should receive proper education on how to handle such situations.
Arbuckle AD
Neonatal Network
2022
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<a href="http://doi.org/10.1891/nn-2021-0010" target="_blank" rel="noreferrer noopener">10.1891/nn-2021-0010</a>
Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff
Attitude of Health Personnel; Attitudes; Female; Health Knowledge; Hospital/psychology; Humans; Intensive Care Units; Male; Medical Staff; Neonatal/statistics & numerical data; Nursing Staff; Practice; Professional-Family Relations; Resuscitation Orders/psychology; Retrospective Studies; Surveys and Questionnaires; United States; Withholding Treatment/statistics & numerical data
OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect clinical care is unknown. DESIGN: Retrospective medical record data review and staff survey responses about neonatal ICU do-not-resuscitate orders. SETTING: Four academic neonatal ICUs. SUBJECTS: Clinical staff members working in each neonatal ICU. INTERVENTIONS: Survey response collection and analysis. MEASUREMENTS AND MAIN RESULTS: Participating neonatal ICUs had 14-48 beds and 120-870 admissions/yr. Frequency range of do-not-resuscitate orders was 3-11 per year. Two-hundred fifty-seven surveys were completed (46% response). Fifty-nine percent of respondents were nurses; 20% were physicians. Over the 5-year period, 44% and 17% had discussed a do-not-resuscitate order one to five times and greater than or equal to 6 times, respectively. Fifty-seven percent and 22% had cared for one to five and greater than or equal to 6 patients with do-not-resuscitate orders, respectively. Neonatologists, trainees, and nurse practitioners were more likely to report receiving training in discussing do-not-resuscitate orders or caring for such patients compared with registered nurses and respiratory therapists (p < 0.001). Forty-one percent of respondents reported caring for an infant in whom interventions had been withheld after a do-not-resuscitate order had been placed without discussing the specific withholding with the family. Twenty-seven percent had taken care of an infant in whom interventions had been withdrawn under the same circumstances. Participants with previous experiences withholding or withdrawing interventions were more likely to agree that these actions are appropriate (p < 0.001). CONCLUSIONS: Most neonatal ICU staff report experience with do-not-resuscitate orders; however, many, particularly nurses and respiratory therapists, report no training in this area. Variable beliefs with respect to withholding and withdrawing care for patients with do-not-resuscitate orders exist among staff. Because neonatal ICU patients with do-not-resuscitate orders may ultimately survive, withholding or withdrawing interventions may have long-lasting effects, which may or may not coincide with familial intentions.
Arzuaga BH; Wraight CL; Cummings CL; Mao W; Miedema D; Brodsky DD
Pediatric Critical Care Medicine
2018
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Neonatal palliative care: A single site clinical audit
cause of death; newborn; terminal care; major clinical study; retrospective study; newborn death; hospital admission; conference abstract; human; child; female; male; social work; palliative therapy; clinical audit; speech; bereavement support; physiotherapy; gold; music therapy; nursing staff; seashore
Background: Best practice, palliative and end-of-life care (EOLC) enhances symptom management and quality-of-life for individuals who are palliative and dying, and their families. Although Gold Coast Health (GCH) has a dedicated, interdisciplinary palliative care service (including allied health) for adults, no equivalent local neonatal/paediatric service exists, highlighting inequity of access to care based on age. This project investigated allied health service usage of neonates requiring palliative and EOLC and their families in GCH. Method(s): A retrospective clinical audit was conducted to map the patient journey of all neonatal deaths within GCH between September 2013 and May 2018. Variables included: number, place and cause of death, diagnoses, number/reasons for hospital admissions, frequency and type of allied health interventions received. Result(s): 66 neonatal deaths were identified. 62 deaths occurred at GCUH, 2 elsewhere, and 2 at home. Of the 127 interventions carried out (excluding daily nursing staff) 72 were provided by acute service allied health professionals. Proportion of AH interventions included Social Work (85%), Physiotherapy (11%), Speech Pathology (3%), and Music Therapy (1%). Only 1 neonate was registered with QPPCS, however 20 received palliation. Full data will be presented. Conclusion(s): GCH requires a funded, appropriately resourced, interdisciplinary palliative care and bereavement service for neonates and children to ensure our families are provided with equitable access to evidence based, local services across the continuum of care (including in-the-home).
Gill K; Weir K; Delaney A; Moloney S; Herbert A; Noyes M; Hong T; Broadbent A; Scuffham P; Mickan S
Journal of Paediatrics and Child Health
2019
<a href="http://doi.org/10.1111/jpc.14409" target="_blank" rel="noreferrer noopener">10.1111/jpc.14409</a>
Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care
Humans; Professional-Family Relations; Palliative Care/px [Psychology]; Nursing Staff; Child; Female; Male; Nursing Methodology Research; Qualitative Research; Nursing; Palliative Care/mt [Methods]; Nurse-Patient Relations; Nursing Staff; Hospital/px [Psychology]; Critical Care Nursing/mt [Methods]; Nurse's Role/px [Psychology]; Hospital/og [Organization & Administration]; Philosophy
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses from four practice sites was interviewed using a semi-structured interview guide., RESULTS: Nurses across the sites engaged in a process of maintaining integrity whereby they integrated two competing, yet essential, aspects of their nursing role - behaving professionally and connecting personally. When skillful in both aspects, nurses were satisfied that they provided high-quality, family-centered care to children and families within a clearly defined therapeutic relationship. At times, tension existed between these two aspects and nurses attempted to mitigate the tension. Unsuccessful mitigation attempts led to compromised integrity characterized by specific behavioral and emotional indicators. Successfully mitigating the tension with strategies that prioritized their own needs and healing, nurses eventually restored integrity. Maintaining integrity involved a continuous effort to preserve completeness of both oneself and one's nursing practice., CONCLUSIONS: Study findings provide a theoretical conceptualization to describe the process nurses use in navigating boundaries and contribute to an understanding for how this specialized area of care impacts health care providers., PRACTICE IMPLICATIONS: Work environments can better address the challenges of navigating boundaries through offering resources and support for nurses' emotional responses to caring for seriously ill children. Future research can further refine and expand the theoretical conceptualization of maintaining integrity presented in this paper and its potential applicability to other nursing specialties.Copyright © 2017 Elsevier Inc. All rights reserved.
Erikson A; Davies B
Journal of Pediatric Nursing
2017
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<a href="http://doi.org/10.1016/j.pedn.2017.02.031" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2017.02.031</a>
The relationship between providing neonatal palliative care and nurses' moral distress: an integrative review
Nursing Staff; neonatal intensive care; Burnout; moral distress; review
Moral distress has been identified in multiple clinical settings especially in critical care areas. The neonatal intensive care unit (NICU) has frequent situations in which moral distress may occur including providing palliative care. The purpose of this integrative review was to determine the relationship between the provision of palliative care in a NICU and nurses' moral distress. The evidence reviewed supports that moral distress does occur with the provision of neonatal palliative care. An interdisciplinary care team, an established protocol, and educational interventions may decrease moral distress in nurses providing end-of-life care to infants in the NICU.
2014-10
Cavinder C
Advances In Neonatal Care
2014
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Journal Article
<a href="http://doi.org/10.1097/ANC.0000000000000100" target="_blank" rel="noreferrer">10.1097/ANC.0000000000000100</a>
The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan
Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; referral and consultation; Adult; Attitude of Health Personnel; Education; Medical Staff; Withholding Treatment; Questionnaires; Middle Aged; Attitude to Death; Resuscitation Orders; Self Report; Neonatology; Medical; Neonatal; Nursing Staff; Newborn; Clinical; Ethics Committees; Taiwan; Hospital; continuing
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of 'DNR' to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed.
2013-06
Huang L-C; Chen CH; Liu Hsin-Li; Lee Ho-Yu; Peng Niang-Huei; Wang Teh-Ming; Chang YC
Journal Of Medical Ethics
2013
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Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100428" target="_blank" rel="noreferrer">10.1136/medethics-2011-100428</a>
End-of-life decision making in Taiwan: healthcare practice is rooted in local culture and laws that should be adjusted to patients' best interests
Female; Humans; Male; Terminal Care; decision making; Attitude of Health Personnel; Medical Staff; Attitude to Death; Resuscitation Orders; Neonatology; Nursing Staff; Hospital
The observed Taiwanese neonatal professionals' more conservative attitudes than their worldwide colleagues towards end-of-life (EOL) decision making may stem from cultural attitudes toward death in children and concerns about medicolegal liability. Healthcare practice is rooted in local culture and laws; however that should be adjusted to patients' best interests. Improving Taiwanese neonatal professionals' knowledge and competence in EOL care may minimize ethical dilemmas, allow appropriate EOL care decision making, avoid infants' suffering, and ease parents' bereavement grief.
2013-06
Tang Siew Tzuh
Journal Of Medical Ethics
2013
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Journal Article
<a href="http://doi.org/10.1136/medethics-2012-100760" target="_blank" rel="noreferrer">10.1136/medethics-2012-100760</a>
Exploring communication difficulties in pediatric hematology: oncology nurses
Child; Female; Humans; Male; Neoplasms; Terminal Care; Adult; Attitude of Health Personnel; Prognosis; Follow-Up Studies; Oncology Nursing; Communication Barriers; Qualitative Research; Pediatric Nursing; Nurse-Patient Relations; Hospitals; Hematology; Turkey; Nursing Staff; Pediatric; Hospital
BACKGROUND: Communication plays an important role for the well being of patients, families and also health care professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety, hopelessness and decreased of quality life for patients, families and also nurses. OBJECTIVE: This study aimed to explore communication difficulties of pediatric hematology/oncology nurses with patients and their families, as well as their suggestions about communication difficulties. MATERIALS AND METHODS: It was conducted in a pediatric hematology/oncology hospital in Ankara, Turkey. Qualitative data were collected by focus groups, with 21 pediatric hematology/oncology nursing staff from three groups. Content analysis was used for data analysis. RESULTS: Findings were grouped in three main categories. The first category concerned communication difficulties, assessing problems in responding to questions, ineffective communication and conflicts with the patient's families. The second was about the effects of communication difficulties on nurses and the last main category involved suggestions for empowering nurses with communication difficulties, the theme being related to institutional issues. CONCLUSIONS: Nurses experience communication difficulties with children and their families during long hospital stays. Communication difficulties particularly increase during crisis periods, like at the time of first diagnosis, relapse, the terminal stage or on days with special meaning such as holidays. The results obtained indicate that pediatric nurses and the child/family need to be supported, especially during crisis periods. Feeling of empowerment in communication will improve the quality of care by reducing the feelings of exhaustion and incompetence in nurses.
2013
Citak EA; Toruner Ebru Kilicarslan; Gunes NB
Asian Pacific Journal Of Cancer Prevention
2013
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Journal Article
<a href="http://doi.org/10.7314/apjcp.2013.14.9.5477" target="_blank" rel="noreferrer">10.7314/apjcp.2013.14.9.5477</a>
The experiences of Chinese family members of terminally ill patients - a qualitative study
Female; Humans; Male; Grief; Adult; Questionnaires; Aged; Middle Aged; Professional-Family Relations; Health Services Needs and Demand; Qualitative Research; Nursing Methodology Research; Health Education; Nursing Staff; Practice; adolescent; 80 and over; Adaptation; Psychological; Attitudes; Health Knowledge; social support; Anger; Attitude to Death/ethnology; Hong Kong; Hospital/psychology; Nurse's Role/psychology; Attitude to Health/ethnology; Family/ethnology; Palliative Care/organization & administration/psychology
AIM: To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. BACKGROUND: Palliative care aims to provide care to dying patients and their family members. Skillful interventions are necessary to help family members cope with the impending death of the patient and maintain their emotional equilibrium. Hence, it is important to understand the experiences of family members of palliative care. DESIGN: A phenomenological study was conducted. Data were collected by semi-structured interviews. We interviewed a purposive sample of 20 family members of terminally ill patients in a palliative care unit in Hong Kong. The data were analysed following Colaizzi's phenomenological methodology. RESULTS: Family members experienced anticipatory grief, with reactions that included anger, unease, sadness and helplessness. This was particularly acute when the patient was first admitted to the palliative care unit. However, the family members quickly accepted the reality and committed themselves to the care of the patient, seeking informational and emotional support from the nurses. The families wanted to be assured that the patient had been offered good care and suffered no pain. It was considered important to be with the patient during the dying process. CONCLUSION: This study demonstrated that Chinese family members were committed to the care of the patients in the palliative care unit. Cultural beliefs played a part in influencing family emotions and concerns. RELEVANCE TO CLINICAL PRACTICE: This study offers a direction for family interventions that acknowledge the reactions of family members to the admission of a patient to a palliative care unit. It highlights that families need active informational and emotional support from nurses.
2007
Wong MS; Chan SW
Journal Of Clinical Nursing
2007
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2702.2007.01943.x" target="_blank" rel="noreferrer">10.1111/j.1365-2702.2007.01943.x</a>
Paediatric fever management: continuing education for clinical nurses
Child; Cross-Sectional Studies; Female; Humans; Male; Analgesics; Attitude of Health Personnel; Education; Questionnaires; Health Services Needs and Demand; Nurse's Role; Time Factors; Hospitals; Nursing Staff; Practice; Pediatric; Attitudes; PedPal Lit; Health Knowledge; Non-Narcotic/therapeutic use; Nursing; Educational Status; Certification; Urban; Nursing Process; Clinical Competence/standards; Continuing/organization & administration; Evidence-Based Medicine/education; Fever/nursing/prevention & control; Hospital/education/psychology; Negativism; Pediatric Nursing/education
PURPOSE: This study examined the influence of level of practice, additional paediatric education and length of paediatric and current experience on nurses' knowledge of and beliefs about fever and fever management. METHOD: Fifty-one nurses from medical wards in an Australian metropolitan paediatric hospital completed a self-report descriptive survey. RESULTS: Knowledge of fever management was mediocre (Mean 12.4, SD 2.18 on 20 items). Nurses practicing at a higher level and those with between one and four years paediatric or current experience were more knowledgeable than novices or more experienced nurses. Negative beliefs that would impact nursing practice were identified. Interestingly, beliefs about fever, antipyretic use in fever management and febrile seizures were similar; they were not influenced by nurses' knowledge, experience, education or level of practice. CONCLUSIONS: Paediatric nurses are not expert fever managers. Knowledge deficits and negative attitudes influence their practice irrespective of additional paediatric education, paediatric or current experience or level of practice. Continuing education is therefore needed for all paediatric nurses to ensure the latest clear evidence available in the literature for best practice in fever management is applied.
2006
Walsh AM; Edwards HE; Courtney MD; Wilson JE; Monaghan SJ
Nurse Education Today
2006
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Journal Article
Consultation with children in hospital: children, parents' and nurses' perspectives
Child; Humans; England; Parent-Child Relations; Questionnaires; Communication; Hospitals; Comprehension; Nursing Staff; Pediatric; Interviews; PedPal Lit; Parents/psychology; decision making; Attitude of Health Personnel; Patient Participation; Nurse-Patient Relations; Nurse's Role; Hospital/psychology; Hospitalized/psychology
AIMS AND OBJECTIVES: To explore children's, parents' and nurses' views on participation in care in the healthcare setting. BACKGROUND: Children have a right to be consulted and involved in their care. DESIGN: The grounded theory method was used and data were collected through in-depth interviews, questionnaires and observation. Sample consisted of 11 children, 10 parents and 12 nurses from four paediatric wards in two hospitals in England. RESULTS: Parents felt that children should be involved in the decision-making process thereby enhancing and promoting children's self-esteem and positive self-regard, which would consequently enhance their overall welfare. Likewise, children expressed the need for consultation and information so that they could understand their illness; be involved in their care, and prepare themselves for procedures. However, children's own opinions and views were underused and they had varying experiences of being consulted about their care and treatment. Nurses appeared to hold varying and discrepant views on the involvement of children in decisions and for some nurses, the child's involvement seemed to be dependent on the child's cognitive maturity and being defined as a rational subject. CONCLUSION: Health professionals' communication behaviour may reflect recognition of children's cognitive abilities rather than their competence to understand. The fact that children's nurses appeared to make decisions about involving children in decision making in the absence of a reliable framework was a significant finding and highlights a real problem in the current climate. RELEVANCE TO CLINICAL PRACTICE: Nurses faced with workforce pressures may encounter considerable challenges to facilitating children's involvement in decisions about their care. Hence it is imperative that nurses' examine the basis of their decisions and use more explicit criteria for determining children's involvement.
2006
Coyne I
Journal Of Clinical Nursing
2006
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Journal Article
Hospital for the children
Child; Humans; England; Attitude of Health Personnel; Nurse's Role; Hospitals; Nursing Staff; PedPal Lit; Oncologic Nursing/organization & administration; Pediatric Nursing/organization & administration; Pediatric/organization & administration; Cancer Care Facilities/organization & administration; Hospital Planning/organization & administration; Hospital/organization & administration/psychology
2006
Houlston A
Nursing Standard
2006
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Journal Article
Nurses' attitudes to pain management during routine venepuncture in young children
Child; Humans; Pain Measurement; Questionnaires; Age Factors; Severity of Illness Index; Nursing Assessment; Nursing Methodology Research; Child Advocacy; Nursing Staff; Patient Rights; Practice; Preschool; Attitudes; PedPal Lit; infant; Health Knowledge; Hospitalized/psychology; Child; Nurse's Role/psychology; Attitude of Health Personnel; administration/psychology; Hospital/education/organization &; Pain/diagnosis/etiology/prevention & control/psychology; Pediatric Nursing/education/organization & administration; Phlebotomy/adverse effects
Venepuncture is one of the most commonly performed clinical procedures carried out on young children. Evidence indicates inconsistency in the use of pain management strategies during these procedures. A survey method was used to explore nurses' views on the experience of pain by infants and toddlers and the pain management techniques they use. All children's nurses on the general medical and surgical wards at one hospital site were invited to participate (n=55)
45 responses were receive (81 per cent). These children's nurses believe that infants and toddlers feel more pain and display more distress than older children. Respondents reported that pharmacological preparations were not generally used on infants prior to venous cannulation
Melhuish S; Payne H
Paediatric Nursing
2006
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Journal Article
Nurse-led paediatric pre operative assessment: an equivalence study
Child; Female; Humans; Male; Great Britain; Medical Staff; Nurse's Role; Sensitivity and Specificity; Hospitals; Nursing Evaluation Research; Single-Blind Method; Teaching; Nursing Staff; adolescent; Preschool; PedPal Lit; infant; Comparative Study; Clinical Competence/standards; Hospital/standards; Pediatric Nursing/education/organization & administration; Ambulatory Surgical Procedures/education/nursing; Hospital/education/standards; Medical History Taking/standards; Nursing Assessment/standards; Perioperative Nursing/education/organization & administration; Physical Examination/nursing/standards; Preoperative Care/nursing
AIM: to explore whether nurses can undertake the pre operative assessment of children prior to day case surgery as safely as senior house officers. DESIGN: a randomised controlled trial involving 595 children, using an equivalence methodology (a method which looks for similarity rather than a significant difference). Pre-operative assessment prior to day case surgery was randomised to either a nurse (experimental group) or a junior doctor (control group). Blinded expert verification of nurse/junior doctor performance was ascertained by an experienced anaesthetist (the 'gold standard'). RESULTS: there was equivalence between nurses and senior house officers in their ability to detect clinically significant abnormalities within the sample population. Subgroup analysis also demonstrated equivalence in respect of history taking abilities. The smaller number of clinically significant physical findings within the sample meant that equivalence in respect of physical examination remains uncertain. Although the study was limited to a single setting, the results demonstrate nurses' equivalence with junior doctors in a discrete paediatric context.
2006
Rushforth H; Burge D; Mullee M; Jones S; McDonald H; Glasper EA
Paediatric Nursing
2006
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Journal Article
Clinician predictions of intensive care unit mortality
Female; Humans; Male; Medical Staff; Hospital Mortality; Prognosis; Prospective Studies; Middle Aged; Respiration; Severity of Illness Index; Survival Analysis; Risk Factors; Predictive Value of Tests; Chi-Square Distribution; Proportional Hazards Models; Nursing Staff; Artificial; Intensive Care Units/statistics & numerical data; APACHE; Nursing Assessment/standards; Likelihood Functions; Clinical Competence/standards; Critical Illness/mortality/therapy; Hospital/standards; Multiple Organ Failure/classification/mortality
OBJECTIVE: Predicting outcomes for critically ill patients is an important aspect of discussions with families in the intensive care unit. Our objective was to evaluate clinical intensive care unit survival predictions and their consequences for mechanically ventilated patients. DESIGN: Prospective cohort study. SETTING: Fifteen tertiary care centers. PATIENTS: Consecutive mechanically ventilated patients > or = 18 yrs of age with expected intensive care unit stay > or = 72 hrs. INTERVENTIONS: We recorded baseline characteristics at intensive care unit admission. Daily we measured multiple organ dysfunction score (MODS), use of advanced life support, patient preferences for life support, and intensivist and bedside intensive care unit nurse estimated probability of intensive care unit survival. MEASUREMENTS AND MAIN RESULTS: The 851 patients were aged 61.2 (+/- 17.6, mean + SD) yrs with an Acute Physiology and Chronic Health Evaluation (APACHE) II score of 21.7 (+/- 8.6). Three hundred and four patients (35.7%) died in the intensive care unit, and 341 (40.1%) were assessed by a physician at least once to have a < 10% intensive care unit survival probability. Independent predictors of intensive care unit mortality were baseline APACHE II score (hazard ratio, 1.16; 95% confidence interval, 1.08-1.24, for a 5-point increase) and daily factors such as MODS (hazard ratio, 2.50; 95% confidence interval, 2.06-3.04, for a 5-point increase), use of inotropes or vasopressors (hazard ratio, 2.14; 95% confidence interval, 1.66-2.77), dialysis (hazard ratio, 0.51; 95% confidence interval, 0.35-0.75), patient preference to limit life support (hazard ratio, 10.22; 95% confidence interval, 7.38-14.16), and physician but not nurse prediction of < 10% survival. The impact of physician estimates of < 10% intensive care unit survival was greater for patients without vs. those with preferences to limit life support (p < .001) and for patients with less vs. more severe organ dysfunction (p < .001). Mechanical ventilation, inotropes or vasopressors, and dialysis were withdrawn more often when physicians predicted < 10% probability of intensive care unit survival (all ps < .001). CONCLUSIONS: Physician estimates of intensive care unit survival < 10% are associated with subsequent life support limitation and more powerfully predict intensive care unit mortality than illness severity, evolving or resolving organ dysfunction, and use of inotropes or vasopressors.
2004
Rocker G; Cook D; Sjokvist P; Weaver B; Finfer S; McDonald E; Marshall J; Kirby A; Levy M; Dodek P; Heyland D; Guyatt G; Level of Care Study Investigators; Canadian Critical Care Trials Group
Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.ccm.0000126402.51524.52" target="_blank" rel="noreferrer">10.1097/01.ccm.0000126402.51524.52</a>
Evaluation of patient-care protocol use by various providers
Humans; Medical Staff; Medical Audit; Cooperative Behavior; Patient Care Planning; Medical History Taking; Hospitals; Nurse Practitioners; Teaching; Medical; Nursing Staff; RDF Project; Hospital; Fees; General; Laboratory Techniques and Procedures; North Carolina; Personnel; Pharyngitis/diagnosis/therapy; Physician Assistants/education
1975
Grimm R; Shimoni K; Harlan W; Estes E
New England Journal Of Medicine
1975
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Journal Article
<a href="http://doi.org/10.1056/nejm197503062921005" target="_blank" rel="noreferrer">10.1056/nejm197503062921005</a>
Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit
Child; Cross-Sectional Studies; Humans; Intensive Care Units; Adult; Attitude of Health Personnel; Medical Staff; Prognosis; Questionnaires; Euthanasia; Life Support Care; Activities of Daily Living; Linear Models; Nursing Staff; Pediatric; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; Family/psychology; ICU Decision Making; Intervention; Interventions; Passive; Hospital/psychology
OBJECTIVE: To explore patient-related factors which influence the decisions of pediatric intensive care unit (ICU) caregivers to restrict life-support interventions. DESIGN: Cross-sectional survey. SETTING: A university-affiliated pediatric ICU. SUBJECTS: All physicians and nurses caring for oncology or cardiology ICU patients. INTERVENTIONS: Seven patient characteristics were systematically presented in 16 theoretical case scenarios. MEASUREMENTS AND MAIN RESULTS: Individual linear regression models were constructed for each participant by calculating the importance caregivers placed on seven patient characteristics when deciding about starting intravenous vasopressors, performing chest compressions, and withdrawing life support. We compared the numerical and descriptive (very low, low, moderate, high) probability of survival. We surveyed 86 caregivers and 56 (65%) responded. The most important factors influencing decisions were family preferences (76% of decisions), followed by probability of survival (50%), and functional status (47%). There was marked variability among respondents in 38 (79%)/48 of the questions; 20% to 50% of caregivers chose opposing directions of patient management when they were asked to indicate the likelihood that they would perform a specific life-support intervention. The same term was never used by all respondents to describe the probability of survival for a scenario. CONCLUSION: Critically ill children and their families could face markedly different attitudes about the restriction of life-support interventions, depending on which nurses and physicians are involved in their care.
1997
Randolph AG; Zollo MB; Wigton RS; Yeh TS
Critical Care Medicine
1997
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Journal Article
<a href="http://doi.org/10.1097/00003246-199703000-00011" target="_blank" rel="noreferrer">10.1097/00003246-199703000-00011</a>
End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses
Child; Cross-Sectional Studies; Humans; United States; Intensive Care Units; Adult; Attitude of Health Personnel; Medical Staff; Questionnaires; Middle Aged; Attitude to Death; Multivariate Analysis; Hospitals; Analysis of Variance; Child Advocacy; Ethics; Medical; Nursing Staff; Practice; Pediatric; Empirical Approach; Death and Euthanasia; Attitudes; decision making; Health Knowledge; ICU Decision Making; Nursing; Pediatrics/methods; Critical Care/organization & administration/psychology; Hospital/education/psychology; Physician's Practice Patterns/organization & administration; Terminal Care/organization & administration/psychology
OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric hospitals in the United States. MEASUREMENTS AND MAIN RESULTS: The survey was completed by 110/130 (85%) physicians and 92/130 (71%) nurses. The statement that withholding and withdrawing life support is unethical was not endorsed by any of the physicians or nurses. More physicians (78%) than nurses (57%) agreed or strongly agreed that withholding and withdrawing are ethically the same (p < .001). Physicians were more likely than nurses to report that families are well informed about the advantages and limitations of further therapy (99% vs. 89%; p < .003); that ethical issues are discussed well within the team (92% vs. 59%; p < .0003), and that ethical issues are discussed well with the family (91% vs. 79%; p < .0002). On multivariable analyses, fewer years of practice in pediatric critical care was the only clinician characteristic associated with attitudes on end-of-life care dissimilar to the consensus positions reached by national medical and nursing organizations on these issues. There was no association between clinician characteristics such as their political or religious affiliation, practice-related variables such as the size of their intensive care unit or the presence of residents and fellows, and particular attitudes about end-of-life care. CONCLUSIONS: Nearly two-thirds of pediatric critical care physicians and nurses express views on end-of-life care in strong agreement with consensus positions on these issues adopted by national professional organizations. Clinicians with fewer years of pediatric critical care practice are less likely to agree with this consensus. Compared with physicians, nurses are significantly less likely to agree that families are well informed and ethical issues are well discussed when assessing actual practice in their intensive care unit. More collaborative education and regular case review on bioethical issues are needed as part of standard practice in the intensive care unit.
2001
Burns JP; Mitchell C; Griffith JL; Truog RD
Critical Care Medicine
2001
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Journal Article
<a href="http://doi.org/10.1097/00003246-200103000-00036" target="_blank" rel="noreferrer">10.1097/00003246-200103000-00036</a>
Pediatric nurses' individual and group assessments of palliative, end-of-life, and bereavement care
Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Terminal Care; Attitude of Health Personnel; Hospitals; Nursing Staff; Pediatric; bereavement; Nurses/psychology; Hospital/psychology
BACKGROUND: Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital. OBJECTIVE: To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units. METHOD: A cross-sectional survey of nurses at a freestanding children's hospital in 2005. RESULTS: Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics. CONCLUSIONS: Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs.
Tubbs-Cooley HL; Santucci G; Kang T; Feinstein JA; Hexem KR; Feudtner C
Journal Of Palliative Medicine
2011
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Journal Article
<a href="http://doi.org/10.1089/jpm.2010.0409" target="_blank" rel="noreferrer">10.1089/jpm.2010.0409</a>
Tracking the route to sustainability: a service evaluation tool for an advance care planning model developed for community palliative care services.
Humans; Terminal Care; Advance Directives; Victoria; Qualitative Research; Health Services Research; Nursing Staff; advance care planning; DNAR; Palliative Care; Organizational; Models; Community Health Services; Program Evaluation/mt [Methods]; Community Health Services/og [Organization & Administration]
AIMS AND OBJECTIVES: The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care., BACKGROUND: Internationally, advance care planning programmes usually measure success by completion rate of advance directives or plans. This outcome measure provides little information to assist nurse managers to embed advance care planning into usual care and measure their performance and quality over time. An evaluation tool was developed to address this need in Australian community palliative care services., DESIGN: Multisite action research approach., METHODS: Three community palliative care services located in Victoria, Australia, participated. Qualitative and quantitative data collection strategies were used to develop the Advance Care Planning-Service Evaluation Tool., RESULTS: The Advance Care Planning-Service Evaluation Tool identified advance care planning progress over time across three stages of Establishment, Consolidation and Sustainability within previously established Model domains of governance, documentation, practice, education, quality improvement and community engagement. The tool was used by nurses either as a peer-assessment or self-assessment tool that assisted services to track their implementation progress as well as plan further change strategies., CONCLUSION: The Advance Care Planning-Service Evaluation Tool was useful to nurse managers in community palliative care. It provided a clear outline of service progress, level of achievement and provided clear direction for planning future changes., RELEVANCE TO CLINICAL PRACTICE: The Advance Care Planning-Service Evaluation Tool enables nurses in community palliative care to monitor, evaluate and plan quality improvement of their advance care planning model to improve end-of-life care. As the tool describes generic healthcare processes, there is potential transferability of the tool to other types of services.Copyright © 2012 Blackwell Publishing Ltd.
Blackford J; Street A
Journal Of Clinical Nursing
2012
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2702.2012.04179.x" target="_blank" rel="noreferrer">10.1111/j.1365-2702.2012.04179.x</a>
Barriers of Palliative Care in Neonatal Intensive Care Units
Health Personnel Attitude; Organization And Management; Psychology; Adult; Clinical Competence; Cross Sectional Study; Female; Human; Iran; Islam; Male; Middle Aged; Neonatal Intensive Care Unit; Newborn; Nursing Staff; Organization; Palliative Therapy; Reproducibility; Socioeconomics; Terminal Care
OBJECTIVE: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses' attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study thus conducted to examine neonatal nurses' attitude toward barriers in providing NPC in Southeast Iran. METHOD: In this cross-sectional study, a translated modified version of Neonatal Palliative Care Attitude Scale was used to examine attitudes of 70 nurses toward barriers of palliative care in 3 neonatal intensive care units in Southeast Iran. RESULTS: Findings indicated that overall 42.63% of nurses were strongly agreed or agreed with the proposed barriers in NPC. Among all categories, the highest and the lowest scores belonged to the categories of "insufficient resources" (3.42 +/- 0.65) and "inappropriate personal and social attitudes" (2.33 +/- 0.48), respectively. Neonatal nurses who had less education and study regarding NPC reported the presence of more barriers to NPC in the categories of "inappropriate organizational culture" and/or "inadequate nursing proficiency." Also, younger nurses had more positive attitudes toward the category of inappropriate organizational culture as being a barrier to provision of NPC (4.62). CONCLUSION: The findings suggest that developing a context-based instrument is required to represent the barrier more precisely. Neonatal palliative care can be improved by establishing a special environment to focus on infants' EOL care. This establishment requires standard palliative care guidelines and adequate NPC-trained nurses.
Azzizadeh Forouzi M; Banazadeh M; Ahmadi JS; Razban F
The American Journal Of Hospice & Palliative Care
2017
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<a href="http://doi.org/10.1177/1049909115616597" target="_blank" rel="noreferrer">10.1177/1049909115616597</a>
The Relationship Between The Nursing Environment And Delivering Culturally Sensitive Perinatal Hospice Care
End-of-life Care; Hospice Organisation; Nursing Administration; Nursing Leadership; Nursing Staff
Delivery Of Health Care; Female; Fetal Death; Hospice And Palliative Care Nursing; Hospices/statistics & Numerical Data; Humans; Infant; Perinatal Care; Perinatal Death; Pregnancy; Retrospective Studies; Surveys And Questionnaires; Transcultural Nursing; United States; Workplace
BACKGROUND: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study addresses. OBJECTIVE: To evaluate the relationship between the nurse work environment and the delivery of culturally sensitive perinatal hospice care. METHOD: This retrospective, correlational study used data from the National Home and Hospice Care Survey, which includes a nationally representative sample of hospice care providers. A multivariate logistic regression model was used to estimate the relationship between the delivery of culturally sensitive care and the nurse work environment. RESULTS: Accreditation, teaching status, and baccalaureate-prepared registered nurse staff had an impact on the provision of culturally sensitive perinatal care Conclusions: The hospice and nursing unit environments, specifically in regards to education and technology, may be important contributors to the delivery of culturally sensitive care.
Mixer Sandra J; Lindley L; Wallace Heather; Fornehed Mary Lou; Wool Charlotte
International Journal Of Palliative Nursing
2015
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10.12968/ijpn.2015.21.9.423
Child Death And Deterioration Review Group
Child Death; Deterioration; Adoption; Adverse Drug Reaction; Case Study; Cause Of Death; Child; Clinical Article; Controlled Study; Female; Health Care Quality; Human; Learning; Male; Nursing Staff; Palliative Therapy; Perception; Side Effect; Student; Trust
Background In order to improve outcomes for acutely unwell children and young people it is essential to learn from those cases in which children deteriorate and die. In our trust there was no universal record of child deaths or deteriorations and no over view of cases to identify learning, either positive or developmental. Aims The child death and deterioration (CDAD) review group was formed to enable a rapid multi-disciplinary timely review of every child death and unplanned PICU admissions. It allows concerns related to the care or cause of death to be identified, identifies need for more detailed reviews, investigation of adverse events and noting of good practice. Methods Group includes senior doctors and nursing staff, palliative care and risk team. Weekly meetings review cases from the preceding week. Cases are allocated 15 min and the patient's team (ideally medical and nursing) presents. Trainees are encouraged to attend. Cases are discussed, actions generated and graded 1-6 according to standard of care given. We also gather parent/patient feedback regarding unplanned PICU admissions to help provide insight into the perception they have of care provided. Results/measures Over the first year of CDAD, 38 child deaths and 138 unplanned PICU admissions have been reviewed. Various data including demographics, clinical area admitted from, involvement of outreach and palliative care teams, cause of death/deterioration and clinical grading are available (see figures 1-4). Multiple lessons of positive and negative practices as well as action plans are collated and fed back via care groups QuEST (M and M type) meeting. Favourable event reporting forms are completed for individuals and teams who have delivered excellent care. Lessons for practice Good discussion between professional groups and different specialities occurs including consideration of number areas of non technical elements. This has identified system, human interaction, equipment, environment and personal factors (including knowledge) that can be improved as well as a number of areas of good practice for spread and adoption.
Alderton M; Pryde K
Archives Of Disease In Childhood
2017
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10.1136/archdischild-2017-313087.20
Neonatal Palliative Care-alice's Journey
Palliative Therapy; Bereavement; Bereavement Support; Child; Doctor Patient Relation; Holistic Care; Human; Infant; Infant Newborn; Medical Staff; Memory; Newborn; Newborn Intensive Care; Nursing Staff; Palliative Care; Patient Referral; Pilot Projects; Sibling; Terminal Care
Background: CHAS and NHS Lothian undertook a pilot project to review how joint working could enhance neonatal palliative care services' for families and staff. This case illustrates how collaborative working can enhance families' choices and experiences for their baby's end of life care. Aim: CHAS staff would work jointly with neonatal unit staff to deliver individualised, high quality palliative, end of life and bereavement care for babies', siblings and their families. Approach: When the neonatal team agreed that Alice had palliative care needs, a referral was made to CHAS.AA CHAS Family Support team member and the South East and Tayside (SEAT) Diana Children's Nurse agreed to work with the family and staff. Emotional and family support was provided and end of life wishes and choices were explored. The family were helped to capture memories and plans were made to help the family achieve their wish of taking Alice home to die. Outcomes: When neonatal intensive care was no longer in Alice's best interest, CHAS were able to offer choice and holistic care to the whole family. Alice's wider family were involved in memory making activities which provided them all with precious keepsakes and positive memories. With collaborative working between CHAS, NHS nursing staff, medical staff and the neonatal transport team, the family's wishes for end of life care which included taking Alice home to die were achieved. A Ongoing bereavement support for the family is available from CHAS. Conclusion: Collaborative working provides the opportunity for enhanced end of life care and support. With the support from CHAS, Alice was taken home to die and spent the last hour of her life in the loving care of her family for her first and last time in her own home.
Rodger E; Halkett C; Murdoch E
Palliative Medicine
2016
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https://doi.org/10.1177/0269216316631462