The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.
Humans; Child; Child, Preschool; Female; Male; Middle Aged; Adult; Qualitative Research; Attitude of Health Personnel; Developmental Disabilities/di [Diagnosis]; Intellectual Disability/di [Diagnosis]; *Fathers/px [Psychology]; *Intellectual Disability/px [Psychology]; *Developmental Disabilities/px [Psychology]
AIMS AND OBJECTIVES: To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD)., BACKGROUND: There is a growing interest in understanding the experiences of fathers of children with IDD given the transformation of the structural change of fathers' roles within the family and wider society., DESIGN: A qualitative design was used to elicit the view and experiences of fathers., METHODS: A total of ten Irish fathers participated in face-to-face interviews. The data were thematically analysed. The COREQ guidelines for reporting qualitative studies were used in the development of this paper., RESULTS: The key themes that emerged were (a) the confirmation of the child's diagnosis (b) the impact of the diagnosis and (c) father's motivation to participate in disability research., CONCLUSIONS: This study informs and develops a further understanding of the international evidence base of fathers receiving a confirmation of a child's diagnosis of an intellectual and developmental disability, the impact of the diagnosis on fathers and their motivation to share their stories to add to the disability research. Health and social care practitioners have important contributions to make in meeting the needs of fathers. There are specific areas to consider in terms of practice, education and research that require further attention and development to ensure fathers' distinct needs regarding their child's diagnosis of IDD are known and responded to effectively., RELEVANCE TO CLINICAL PRACTICE: This study highlights that when the child's disability is confirmed, fathers experience a diverse range of mixed emotions. Health and social care practitioners including nurses need to be aware of the impact of the diagnosis upon fathers. There is scope to develop the knowledge, skills and confidence of health and social care practitioners regarding the experiences of fathers and how they can further support fathers and their families during the critical time of a disability disclosure. Copyright © 2020 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
Marsh, Lynne; Brown, Michael; McCann, Edward
Journal of Clinical Nursing
2020
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/10.1111/jocn.15368" target="_blank" rel="noreferrer noopener">10.1111/jocn.15368</a>
Max's legacy: an evaluation of the impacts of baby loss on staff and families
Female; Descriptive Research; Human; Thematic Analysis; Bereavement; Family Attitudes; Semi-Structured Interview; Abortion, Spontaneous; After Care; Attitude of Health Personnel; Focus Groups; Multimethod Studies; Pregnancy Trimester, First; Pregnancy; Safety; United Kingdom
Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as experiences of baby loss, and make recommendations for future care. Methods A mixed-methods service evaluation was conducted. Data were gathered from healthcare professionals (surveys, phase 1; interviews, phase 2) and service users who had experienced baby loss (focus group discussions, phase 3). Qualitative data were analysed thematically, alongside descriptive quantitative results. Results Communication, support, recognition of loss and environment were key contributors to positive and negative experiences for staff and families. Peer support enhanced communication, reduced isolation and increased ability to function on a daily basis following loss. Conclusions Formal, resourced maternity bereavement aftercare services are essential to the support the experiences, outcomes and safety of staff and families experiencing baby loss and miscarriage.
Whitehouse C; Crane R; Rostron H; Cater K
British Journal of Midwifery
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/10.12968/bjom.2023.31.7.368%5C">10.12968/bjom.2023.31.7.368\</a>"
Assessing HeartSong as a Neonatal Music Therapy Intervention: A Qualitative Study on Personal and Professional Caregivers' Perspectives
Infant, Newborn; Child; Bereavement; Intensive Care Units, Neonatal; Interpersonal Relations; Attitude of Health Personnel; Qualitative Studies; Human; Support, Psychosocial; Music Therapy; Heart Rate; Telephone; Parental Attitudes; Memory; Thematic Analysis; Parental Role; Caregiver Attitudes; Semi-Structured Interview; In Infancy and Childhood; Attitude to Medical Treatment; Extended Family; Singing
Abstract Background: The music therapy HeartSong intervention pairs newborn infant heartbeats with parents' Song of Kin. Formal evidence on professional and personal caregiver perspectives of this intervention is lacking. Purpose: This survey study evaluates the HeartSong music therapy intervention from parent and staff perspectives. Methods: A qualitative study assessing inclusion of HeartSong for family neonatal intensive care unit (NICU) care surveyed 10 professional caregivers comprising medical and psychosocial NICU teams anonymously reflecting their impressions of the intervention. Digital survey of parents/guardians contacted through semistructured phone interviews relayed impressions of recordings: subsequent setup, Song of Kin selection, and use of HeartSong, including thoughts/feelings about it as an intervention. Results: Professional and personal caregivers valued the HeartSong intervention for bereavement support, family support, including parental, extended family/infant support, and to enhance bonding. Emergent themes: memory-making, connectedness/closeness, support of parent role, processing mental health needs of stressful NICU days, and subsequent plans for lifelong HeartSong use. Therapeutic experience was named as a crucial intervention aspect and participants recommended the HeartSong as a viable, accessible NICU intervention. Implications for practice and research: HeartSong's use showed efficacy as a clinical NICU music therapy intervention for families of critically ill and extremely preterm infants, when provided by trained, specialized, board-certified music therapists. Future research focusing on HeartSong in other NICU populations might benefit infants with cardiac disease, parental stress, and anxiety attending to parent-infant bonding. Costs and time benefits related to investment are needed before implementation is considered.
van Dokkum NH; Fagan LJ; Cullen M; Loewy JV
Advances in Neonatal Care
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/10.1097/anc.0000000000001068" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000001068</a>
Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Palliative Care; Professional-Family Relations; Terminal Care; Communication; Collaboration; Hospitals; Attitude of Health Personnel; Professional-Patient Relations; Health Services Accessibility; Human; Education; Reward; Evaluation; Pediatric Care; PubMed; Communities; Multidisciplinary Care Team; Systematic Review; Multimethod Studies
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric palliative care. Methods: Systematic review of published relevant studies in PubMed and Scopus. The bibliography search took place for articles published from 2017 to 2022. The study included articles on qualitative, quantitative or mixed studies of health professionals in hospitals or in the community that provided pediatric palliative care to people <25 years of age, published from 2015 onwards, exploring their views on palliative care. Results: The results of 15 studies performed on 1,505 health professionals showed that their views focused on the rewards gained and challenges experienced from providing pediatric palliative care, the relationship they develop with the child and family, the collaboration and role of the interdisciplinary team, the role of communication and education, and to the effect of the care on patients and their families as well as on their own personal lives. They identify barriers at individual, team, organizational, hospital, community, and policy level. To address these barriers, they used strategies to support health professionals, patients and families, work and care organization strategies, strategies to improve relationships, communication, education, collaboration and intercultural care. Conclusions: Pediatric palliative care is considered both a reward and a challenge for health professionals but it is obvious that their poor and/or inadequate education and insufficient organization of work and care is in need of improvement in order to provide it effectively.
Anastasopoulou E; Dousis E
International Journal of Caring Sciences
2022
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/" target="_blank" rel="noreferrer noopener"></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
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/10.3390/ijerph192416975" target="_blank" rel="noreferrer noopener">10.3390/ijerph192416975</a>
Why is corneal donation so rare in children's hospices? A survey of multidisciplinary team members attitudes, knowledge, practice, and experience
Humans; Attitude of Health Personnel; Health Knowledge, Attitudes, Practice; Child; Patient Care Team; Surveys and Questionnaires; Hospices; attitude; children's hospice; corneal donation; Cornea
BACKGROUND: Corneal donation is a rare event among pediatric patients dying in children's hospices in Italy. Previous research suggests that lack of knowledge and negative attitude of Health Care Professionals (HCPs) are the most relevant factors for low donation rates in hospice, rather than patient ineligibility or public refusal. We conducted a national survey to explore children's hospice staff's knowledge and attitude toward corneal donation, to survey HCPs confidence in discussing the subject with patients and families, to investigate whether staff members receive specific training about corneal donation and its potential impact on the willingness to raise the topic with patients and families. METHODS: An anonymous web-based survey with multiple-choice responses was delivered to the team members of seven Italian children's hospices to test their knowledge and attitude about corneal donation. RESULTS: Of the seven children's hospices approached, four agreed to participate with a response rate of 48.5%. Among respondents, 70% declared that they had not received specific training about corneal donation. Results of statistical analysis showed that there were no significant differences in responses between trained and non-trained staff and among the different professionals (nurses, doctors, psychologists, AND social workers) regarding confidence in discussing the subject with patients and families. CONCLUSIONS: In our sample of HCPs working in Italian children's hospices, there was no difference in self-reported trust between professionals who reported receiving specific cornea donation training and those who did not. It is remarkable that training on corneal donation was endorsed by a minority of the sample.
Giugni C; Cecchi C; Santucci C; Giometto S; Lucenteforte E; Ricci Z
Pediatr Transplant
2022
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/10.1111/petr.14217" target="_blank" rel="noreferrer noopener">10.1111/petr.14217</a>
Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment
Attitude of health personnel; Decision making; Infants; Neonatologists; Physicians
BACKGROUND AND OBJECTIVES: Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with uncertain implications for prognosis influence clinicians' decisions to recommend intensive versus palliative care. METHODS: We conducted a national study of neonatologists using a split sample experimental design. The questionnaire contained 4 clinical vignettes. Participants were randomly assigned to see one of 2 versions that varied only regarding whether they included the following genetic findings: (1) a variant of uncertain significance; (2) a genetic diagnosis that affects neurodevelopment but not acute survival; (3) a genetic versus nongenetic etiology of equally severe pathology; (4) a pending genetic testing result. Physicians answered questions about recommendations they would make for the patient described in each vignette. RESULTS: Vignette versions that included a variant of uncertain significance, a diagnosis foreshadowing neurodevelopmental impairment, or a genetic etiology of disease were all associated with an increased likelihood of recommending palliative rather than intensive care. A pending genetic test result did not have a significant effect on care recommendations. CONCLUSIONS: Findings from this study of hypothetical cases suggest neonatologists apply uncertain genetic findings or those that herald neurodevelopmental disability in problematic ways. As genetic testing expands, understanding how it is used in decision-making and educating clinicians regarding appropriate use are paramount.
Callahan KP; Flibotte J; Skraban C; Wild KT; Joffe S; Munson D; Feudtner C
Pediatrics
2022
<a href="http://doi.org/10.1542/peds.2021-052130" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-052130</a>
Discharge Communication Practices for Children With Medical Complexity: A Retrospective Chart Review
Attitude of Health Personnel; Child; Communication; Hospitalists; Patient Discharge; Retrospective Studies
OBJECTIVES: Children with medical complexity (CMC) have an increased risk of adverse events after hospital discharge. Authors of previous studies have evaluated discharge communication practices with primary care providers (PCPs) in adults and general pediatric patients. There is a lack of evidence surrounding hospitalist communication practices at discharge for CMC. In this study, we explore hospitalist-to-PCP communication for CMC at hospital discharge. METHODS: A retrospective chart review was performed at a single tertiary care children's hospital. The population included patients with ≥1 complex chronic condition who were discharged from the pediatric hospitalist team. The presence, type, and quality of discharge communication were collected. A descriptive analysis in which we used χ(2), t test, Wilcoxon rank testing, and odds ratios was conducted to identify differences in communication practices in CMC. RESULTS: We identified 368 eligible patients and reviewed their electronic medical records. Discharge communication was documented for 59% of patient encounters. Communication was less likely to occur for patients with technology dependence (P = .01), older patients (P = .02), and those who were admitted to a teaching service (P = .04). The quality of discharge summaries did not change for patients with technology dependence compared with patients without technology dependence. CONCLUSIONS: Communication with the PCP at discharge was less likely to be documented in children with technology dependence. Hospitalists may encounter barriers in completion of appropriate and timely discharge communication with PCPs for CMC. Consistent handoff processes could be used to improve care for our patients with enhanced coordination needs.
Rush M; Herrera N; Melwani A
Hospital Pediatrics
2020
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/10.1542/hpeds.2020-0021" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0021</a>
Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study
Infant; Adolescent; Child; Preschool Child; Parents/psychology; Emotions; Communication; Family/psychology; Attitude of Health Personnel; Professional-Family Relations; Socioeconomic Factors; Decision Making; Pilot Projects; Patient Discharge; Intensive Care Units Pediatric/organization & administration/standards
BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and implementing a PICU communication intervention called PICU Supports, and to assess families' and health care teams' perceptions of the intervention. METHODS: This study involved patients requiring more than 24 hours of PICU care. An interventionist trained in PICU-focused health care navigation, a "navigator," met with parents and the health care team to discuss communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and checked in with parents after PICU discharge. The feasibility of implementing the intervention was assessed by tracking navigator activities. Health care team and family perceptions were assessed using surveys, interviews, and focus groups. RESULTS: Of 53 families approached about the study, 35 (66%) agreed to participate. The navigator met with parents on 71% and the health care team on 85% of possible weekdays, and completed 86% of the postdischarge check-ins. Family meetings were offered to 95% of eligible patients. The intervention was rated as helpful by 97% of parents, and comments during interviews were positive. CONCLUSIONS: The PICU Supports intervention is feasible to implement and study and is viewed favorably by parents.
Michelson KN; Charleston E; Aniciete DY; Sorce LR; Fragen P; Persell SD; Ciolino JD; Clayman ML; Rychlik K; Jones V A; Spadino P; Malakooti M; Brown M; White D
American Journal of Critical Care
2020
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/10.4037/ajcc2020478" target="_blank" rel="noreferrer noopener">10.4037/ajcc2020478</a>
Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
Surveys and Questionnaires; Newborn Infant; Pregnancy; Attitude of Health Personnel; Decision Making; Belgium; Terminal Care; Perinatal death; End-of-life decisions; Death; Termination of pregnancy; Neonatologists; Optimism; Attitude questionnaire; Attitudes of neonatologists and neonatal nurses; Neonatal Nurses
AIM: Perinatal death is often preceded by an end-of-life decision (ELD). Disparate hospital policies, complex legal frameworks and ethically difficult cases make attitudes important. This study investigated attitudes of neonatologists and nurses towards perinatal ELDs. METHODS: A survey was handed out to all neonatologists and neonatal nurses in all eight neonatal intensive care units in Flanders, Belgium in May 2017. Respondents indicated agreement with statements regarding perinatal ELDs on a Likert-scale and sent back questionnaires via mail. RESULTS: The response rate was 49.5% (302/610). Most neonatologists and nurses found nontreatment decisions such as withholding or withdrawing treatment acceptable (90-100%). Termination of pregnancy when the foetus is viable in cases of severe or lethal foetal problems was considered highly acceptable in both groups (80-98%). Physicians and nurses do not find different ELDs equally acceptable, e.g. nurses more often than physicians (74% vs 60%, p = 0.017) agree that it is acceptable in certain cases to administer medication with the explicit intention of hastening death. CONCLUSION: There was considerable support for both prenatal and neonatal ELDs, even for decisions that currently fall outside the Belgian legal framework. Differences between neonatologists' and nurses' attitudes indicate that both opinions should be heard during ELD-making.
Dombrecht L; Deliens L; Chambaere K; Baes S; Cools F; Goossens L; Naulaers G; Roets E; Piette V; Cohen J; Beernaert K
Acta Paediatrica
2020
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/10.1111/apa.14797" target="_blank" rel="noreferrer noopener">10.1111/apa.14797</a>
Children's palliative care: examination of a nursing rotation programme
Attitude of Health Personnel; Children's hospice; Children's palliative nursing; Clinical Competence; Hospice and Palliative Care Nursing/education; Humans; Job Satisfaction; London; Nursing Staff/education; Pediatric Nursing/education; Program Evaluation; Rotation programmes
An 8-month rotation programme was implemented for five nurses employed in two kinds of children's palliative care environments: hospital wards and hospices. This study reports the views of the nurses completing the rotation. The research drew on appreciative inquiry and involved a pre- and post-rotation interview and questionnaire. Thematic analysis of the interviews revealed seven themes: adjusting to the rotation programme; support mechanisms; being safe; new knowledge and skills; knowledge exchange; misconceptions; future plans. These were supported by the questionnaire findings. Although the nurses identified some frustration at having to undertake competency assessments relating to previously acquired skills, as well as being out of their 'comfort zone', all the participants highly recommended the programme. They commented very positively on the support they received and the overall learning experience as well as the new insight into different aspects of care. In addition, they were able to share their newfound knowledge and expertise with others.
Whiting L; Whiting M; Petty J; O'Grady M
International Journal of Palliative Nursing
2021
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/10.12968/ijpn.2021.27.1.20" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.1.20</a>
End-of-life care in the pediatric intensive care unit: Survey in Japan
Adolescent; Attitude of Health Personnel; Child; Clinical Decision-Making/mt [Methods]; Health Care Surveys; Humans; Infant; intensive care units; Intensive Care Units; Japan; Palliative Care/mt [Methods]; Palliative Care/sn [Statistics & Numerical Data]; Palliative Care/st [Standards]; Pediatric/sn [Statistics & Numerical Data]; Pediatric/st [Standards]; Physicians'/sn [Statistics & Numerical Data]; Physicians'/st [Standards]; Practice Patterns; Practice Patterns Physicians'/*ethics; Preschool; Terminal Care/mt [Methods]; Terminal Care/sn [Statistics & Numerical Data]; Terminal Care/st [Standards]
BACKGROUND: End-of-life (EOL) care is an important topic in critical care medicine, but EOL discussions with families can be difficult and stressful for intensivists. The aim of this study was to clarify the current practices and barriers facing pediatric intensive care unit (PICU) EOL care and to identify the requisites for excellent PICU EOL care in Japan. METHODS: A survey was conducted in 29 facilities across Japan in 2016. The questionnaire consisted of 19 multiple-choice questions and one open-ended question. RESULTS: Twenty-seven facilities responded to the survey. Only 19% had educational programs on EOL care for fellows or residents. Although 21 hospitals (78%) had a multidisciplinary palliative care team, only eight of these teams were involved in EOL care in PICUs. Mental health care for health-care providers provided by a psychiatrist was rare (4%). The free comments were categorized as individual, team, environment, legal/ethics, or culture. Commonly raised individual issues included "lack of experience and knowledge about EOL care", "fear of making the decision to end care", and "reluctance to be involved in EOL care because of its complex process". Team issues included "insufficient frequency of conferences" and "non-multidisciplinary approach". Legal and ethics issues were "lack of legal support" and "fear of lawsuits". CONCLUSIONS: This study is the first to investigate the current conditions and barriers in PICU EOL care in Japan. Most of the facilities involved were not satisfied with current practices. A need was identified for relevant educational programs, as well as the importance of multidisciplinary and legal support.
Seino Y; Kurosawa H; Shiima Y; Niitsu T
Pediatrics International
2019
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<a href="http://doi.org/10.1111/ped.13924" target="_blank" rel="noreferrer noopener">10.1111/ped.13924</a>
Perception of health professionals about neonatal palliative care
Attitude of Health Personnel; Content Analysis; Human; Infant; Intensive Care Units; Neonatal; Newborn; Palliative Care -- In Infancy and Childhood; Phenomenological Research; Portugal; Professional-Patient Relations; Qualitative Studies; Quality of Life
Objective: To identify the perception of health professionals about neonatal palliative care. Method: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed. Results: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life. Conclusion: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care. Objetivo: Identificar la percepción de los profesionales del equipa de la salud sobre los cuidados paliativos neonatales. Método: Estudio cualitativo fenomenológico, muestra no probabilística de 15 profesionales de la salud de una unidad neonatal del norte de Portugal. Se realizó análisis de contenido. Resultados: A pesar de la falta de formación en cuidados paliativos, los profesionales revelaron preocupación por la dignidad, calidad de vida y confort del recién nacido y su familia. Expresaron dificultades emocionales y relacionales para acompañar las trayectorias de la enfermedad severa y de la muerte y para lidiar con la decisión ética. Conclusión: Debemos destacar que los profesionales son sensibles al dolor, sufrimiento y se muestran dedicados y comprometidos en el cuidado del recién nacido y la familia. Están disponibles para participar en formación y abrazar los desafíos actuales que pasan por la constitución de equipos de cuidados paliativos pediátricos y por lograr una cultura organizacional que permita el progreso de esos cuidados. Objetivo: Identificar a percepção dos profissionais da equipa de saúde sobre os cuidados paliativos neonatais. Método: Estudo qualitativo fenomenológico, amostra não probabilística de 15 profissionais da equipa de saúde de uma unidade de cuidados intensivos neonatal, do norte de Portugal. Realizou-se análise de conteúdo. Resultados: Apesar da falta de formação em cuidados paliativos, os profissionais revelaram preocupação com a dignidade, qualidade de vida e conforto do recém-nascido e família. Expressaram dificuldades emocionais e relacionais no acompanhar as trajetórias de doença grave e morte e a nível da decisão ética no final de vida. Conclusão: Salientamos que os profissionais estão sensíveis à dor e sofrimento e mostram-se dedicados e comprometidos no cuidar do recém-nascido e família. Mostram-se disponíveis para fazer formação e abraçar os desafios atuais que passam pela constituição de equipas de cuidados paliativos pediátricos e o alcançar de uma cultura organizacional que progrida nesses cuidados.
Batoca Silva E M; Machado Silva M J; Marques Silva D
Revista Brasileira de Enfermagem
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).
<a href="http://doi.org/10.1590/0034-7167-2018-0842" target="_blank" rel="noreferrer noopener">10.1590/0034-7167-2018-0842</a>
Paediatricians' expectations and perspectives regarding genetic testing for children with developmental disorders
Array comparative genomic hybridisation; Attitude of Health Personnel; Autism spectrum disorder; Chromosomal microarray; Developmental disorders; Genetic Testing; Global developmental delay; Autism Spectrum Disorder/genetics; Child; Developmental Disabilities/genetics; Humans; Microarray Analysis; Pediatricians/psychology
AIM: To investigate paediatricians' expectations and perspectives of genetic testing for children with developmental disorders. METHODS: Paediatricians working in a developmental clinic were surveyed each time they ordered a chromosomal microarray (CMA) for a child with developmental disorders. Clinical charts were reviewed. Results were analysed using mixed methodology. RESULTS: Ninety-seven % (73/76) of surveys were completed. Paediatricians reported that 36% of parents had difficulties understanding genetic testing and that 40% seemed anxious. The majority expected testing to have positive impacts on children/families. The themes raised were (i) clarifying the diagnosis (56%), (ii) understanding the aetiology of the condition (55%), (iii) enabling prenatal diagnosis/counselling (43%), (iv) improving medical care for the child (15%) and (v) decreasing parental guilt/anxiety (8%). Less than half anticipated negative impacts; 74% expected that the most helpful result for their patient would be an abnormal result explaining the disorder. Among the 73 children for whom CMA was ordered, 81% got tested: 66% of the results were normal, 19% were abnormal and contributed to explain the condition and 12% were abnormal but of unknown significance. CONCLUSION: Paediatricians generally expect many positive and less negative impacts of genetic testing for children with developmental disorders. Parental perspectives are needed.
Tremblay I; Laberge AM; Cousineau D; Carmant L; Rowan A; Janvier A
Acta Paediatrica
2018
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/10.1111/apa.14203" target="_blank" rel="noreferrer noopener">10.1111/apa.14203</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
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).
Grief reactions and coping strategies of trainee doctors working in paediatric intensive care
Attitude of Health Personnel; pediatrics; Intensive Care Units; grief; Adaptation Psychological; attitude to death; physicians - psychosocial factors
Background: The death of a child can have significant emotional effects on doctors responsible for their care. Trainee doctors working in the paediatric intensive care unit (PICU) may be particularly vulnerable. The aim of this study was to examine the emotional impact of, and grief reactions to, a child's death in PICU trainee doctors, along with coping strategies they used.Methods: In a prospective, cross-sectional, observational study, qualitative and quantitative data were recorded on anonymised, written questionnaires. Grief severity was assessed using the Texas Revised Inventory of Grief. Emotional impact was assessed using the shortened Impact of Event Scale. The BriefCOPE tool was used to assess coping strategies. Qualitative data was analysed using conventional content analysis. Data are presented as median (inter-quartile range) or number (%).Results: All invited trainee doctors (23 anaesthetists; 5 paediatricians) completed the questionnaire (age, 30 [29-34] yr; 13/28 [46%] female). Two (7%) doctors experienced severe grief (Texas Revised Inventory of Grief score <39), with five (18%) doctors severely affected by the deaths as measured by the Impact of Event Scale. Qualitative analysis revealed prominent themes of sadness, helplessness, guilt, shock, and concern for the bereaved family. There was limited use of coping strategies. Speaking with another trainee doctor was the principal coping strategy. Requests for debriefing sessions, greater psychological support and follow-up with the patient's family were frequently suggested.Conclusions: Paediatric deaths evoke significant grief and emotional reactions in a subset of PICU trainee doctors. Trainee PICU doctors highlighted a lack of professional support and tailored debriefs.
ffrench-O'Carroll R; Feeley T; Crowe S; Doherty E M
BJA: The British Journal of Anaesthesia
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).
<a href="http://doi.org/10.1016/j.bja.2019.01.034" target="_blank" rel="noreferrer noopener">10.1016/j.bja.2019.01.034</a>
Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?
Infant; Humans; Attitude of Health Personnel; Clinical Decision-Making/mt [Methods]; Infant Care/mt [Methods]; Infant Care/px [Psychology]; Neonatologists/px [Psychology]; Infant Care/st [Standards]; Neonatologists/st [Standards]; Netherlands/ep [Epidemiology]; Scandinavian and Nordic Countries/ep [Epidemiology]; Survival Rate/td [Trends]; Withholding Treatment/st [Standards]; Newborn
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are identified and discussed.
Verhagen A A E
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2018-0478J" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-0478J</a>
Can the Ethical Best Practice of Shared Decision-Making lead to Moral Distress?
Neonatology; Humans; Burnout Professional; Attitude of Health Personnel; Patient Participation; Morals; Stress Psychological; Decision-making; Decision Making/ethics; Clinical ethics; End-of-life issues; Patient Care/ethics; Physicians/ethics/psychology; Professional-professional relationship
When healthcare professionals feel constrained from acting in a patient's best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare providers. Yet an appreciation of how particular disciplines, including physicians, come to be "constrained" in their actions is still lacking. This paper will examine how the application of shared decision-making may contribute to the experience of moral distress for physicians and why such distress may go under-recognized. Appreciation of these dynamics may assist in cross-discipline sensitivity, enabling more constructive dialogue and collaboration.
Prentice TM; Gillam L
Journal of bioethical inquiry
2018
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/10.1007/s11673-018-9847-8" target="_blank" rel="noreferrer noopener">10.1007/s11673-018-9847-8</a>
Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients
Spirituality; advance care planning; Terminal Care/psychology; Middle Aged; Male; Young Adult; Humans; Adult; Female; Decision Making; Attitude of Health Personnel; Religion; advance directives; hospital-specific palliative care issues; spirituality; religion; Health Personnel/psychology; Advance Care Planning/statistics & numerical data; attitude of health personnel; Clergy/psychology; living wills; Living Wills/psychology/statistics & numerical data; physician patient communication
OBJECTIVE:: To understand how health-care providers' (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP's involvement. METHODS:: Online anonymous survey distributed to HCPs in hospital, ambulatory offices, and hospice settings in Dayton, Ohio. We evaluated the associations of HCP religion with their personal ACP, willingness to facilitate ACP, and acceptance of other HCPs' ACP participation. RESULTS:: 704 respondents: nurses (66.2%), physicians (18.8%), other HCPs (15.0%), white (88.9%), and primarily Catholic (23.3%) or Protestant (32.0%). "No religion" was marked by 13.9%. Respondents were favorable to ACP with patients. Religious respondents were more likely to have a living will ( P = .035) and health-care power of attorney ( P = .007) and more accepting of clergy as ACP decision coaches ( P = .030). HCP's religion was not associated with willingness to facilitate ACP discussions. There were minor differences between Catholics and Protestants. CONCLUSIONS:: Personal religious preference is associated with HCP's own ACP but had little relationship with their willingness to facilitate ACP conversations with patients or acceptance of other professional types of HCPs involvement in ACP conversations. Regardless of religious affiliation, HCPs have interest in undertaking ACP and endorse other HCPs ACP involvement. As results of this study suggest that personal religious affiliation is not a barrier for HCPs engaging in ACP with patients, attempts to overcome barriers to increasing ACP should be directed to other factors.
Bowman M; St Cyr S; Stolf I A
American journal of hospice & palliative care
2018
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/10.1177/1049909118785891" target="_blank" rel="noreferrer noopener">10.1177/1049909118785891</a>
Research Priorities in Pediatric Palliative Care
Palliative Care; Parents/px [Psychology]; Humans; United States; Pediatrics; Delphi Technique; Attitude of Health Personnel; Research
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.
Baker JN; Levine D R; Hinds PS; Weaver MS; Cunningham MJ; Johnson L; Anghelescu D; Mandrell B; Gibson DV; Jones B; Wolfe J; Feudtner C; Friebert S; Carter B; Kane J R
Journal of Pediatrics
2015
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<a href="http://doi.org/10.1016/j.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2015.05.002</a>
Towards culturally competent paediatric oncology care. A qualitative study from the perspective of care providers
Oncology Nursing; Netherlands; Neoplasms/th [Therapy]; Communication Barriers; Humans; Qualitative Research; Pediatrics; Palliative Care; Attitude of Health Personnel; Disclosure; Cultural Competency; Oncologists; Culturally Competent Care; Emigrants and Immigrants; Nurses Pediatric; Morocco/eh [Ethnology]; Turkey/eh [Ethnology]
In order to gain more insight on the influence of ethnic diversity in paediatric cancer care, the perspectives of care providers were explored. Semi-structured interviews were conducted among 12 paediatric oncologists and 13 nurses of two different paediatric oncology wards and were analysed using a framework method. We found that care providers described the contact with Turkish and Moroccan parents as more difficult. They offered two reasons for this: (1) language barriers between care provider and parents hindered the exchange of information; (2) cultural barriers between care provider and parents about sharing the diagnosis and palliative perspective hindered communication. Care providers reported different solutions to deal with these barriers, such as using an interpreter and improving their cultural knowledge about their patients. They, however, were not using interpreters sufficiently and were unaware of the importance of eliciting parents' perspectives. Communication techniques to overcome dilemmas between parents and care providers were not used and care providers were unaware of stereotypes and prejudice. Care providers should be offered insight in cultural barriers they are unaware of. Training in cultural competence might be a possibility to overcome manifest barriers.Copyright � 2017 John Wiley & Sons Ltd.
Suurmond J; Lieveld A; van de Wetering M; Schouten-van Meeteren AYN
European journal of cancer care
2017
<a href="http://doi.org/%2010.1111/ecc.12680" target="_blank" rel="noreferrer noopener">10.1111/ecc.12680</a>
Always a burden? Healthcare providers' perspectives on moral distress
Humans; Intensive Care Units; Stress; Attitude of Health Personnel; Female; Male; Adult; Qualitative Research; Intensive Care; Terminal Care/es [Ethics]; Terminal Care/px [Psychology]; Morals; Job Satisfaction; Psychological; Neonatal; Burnout; Terminal Care; Health Personnel/px [Psychology]; Professional/px [Psychology]; Neonatal/sn [Statistics & Numerical Data]; Neonatal/es [Ethics]; Burnout; Intensive Care; Stress; Neonatal/px [Psychology]; Professional; Professional/et [Etiology]; Professional/pc [Prevention & Control]; Psychological/et [Etiology]; Psychological/pc [Prevention & Control]
BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral distress in neonatology. DESIGN: An anonymous questionnaire was distributed to medical and nursing providers within two tertiary level neonatal intensive care units (NICUs)-one surgical and one perinatal-seeking their understanding of the term and their experience of it. Open-ended questions were analysed using qualitative methodology. RESULTS: A total of 345 healthcare providers from two NICUs participated (80% response rate): 286 nurses and 59 medical providers. Moral distress was correctly identified as constrained moral judgement resulting in distress by 93% of participants. However, in practice the term moral distress was also used as an umbrella term to articulate different forms of distress. Moral distress was experienced by 72% of providers at least once a month. Yet despite the negative sequelae of moral distress, few (8% medical, 21% nursing providers) thought that moral distress should be eliminated from the NICU. Open-ended responses revealed that while interventions were desired to decrease the negative impacts of moral distress, moral distress was also viewed as an essential component of the caring profession that prompts robust discussion and acts as an impetus for medical decision-making. CONCLUSIONS: Moral distress remains prevalent within NICUs. While the harmful aspects of moral distress need to be mitigated, moral distress may have a positive role in advocating for and promoting the interests of the neonatal population.
Prentice TM; Gillam L; Davis PG; Janvier A
Archives of Disease in Childhood Fetal & Neonatal Edition
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1136/archdischild-2017-313539" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313539</a>
A qualitative study of health care professionals’ views and experiences of paediatric advance care planning
Adolescence; Advance Care Planning; Attitude of Health Personnel; Child; Community -- England; Conversation; Death; Documentation; England; Family Attitudes; Hospices -- England; Hospital; Hospitals; Human; Infant; Medical Staff; Multidisciplinary Care Team; Newborn; Palliative Care; Pediatric Care -- Psychosocial Factors; Preschool; Qualitative Studies; Semi-Structured Interview; Terminal Care; Thematic Analysis; Time Factors
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.
Jack BA; Mitchell TK; O'Brien MR; Silverio SA; Knighting K
BMC Palliative Care
2018
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/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0347-8</a>
Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity
OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to identify key health outcome domains for CMC as a step toward determining core health metrics for this distinct population of children. METHODS: We conducted and analyzed interviews with 23 diverse national experts on CMC to better understand population health for CMC. Interviewees included child and family advocates, health and social service providers, and research, health systems, and policy leaders. We performed thematic content analyses to identify emergent themes regarding population health for CMC. RESULTS: Overall, interviewees conveyed that defining and measuring population health for CMC is an achievable, worthwhile goal. Qualitative themes from interviews included: 1) CMC share unifying characteristics that could serve as the basis for population health outcomes; 2) optimal health for CMC is child specific and dynamic; 3) health of CMC is intertwined with health of families; 4) social determinants of health are especially important for CMC; and 5) measuring population health for CMC faces serious conceptual and logistical challenges. CONCLUSIONS: Experts have taken initial steps in defining the population health of CMC. Population health for CMC involves a dynamic concept of health that is attuned to individual, health-related goals for each child. We propose a framework that can guide the identification and development of population health metrics for CMC.
Barnert ES; Coller R J; Nelson BB; Thompson LR; Chan V; Padilla C; Klitzner TS; Szilagyi M; Chung P J
Academic Pediatrics
2017
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/10.1016/j.acap.2017.02.010" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2017.02.010</a>
[French law related to patient's rights and end of life: pediatric intensive care unit's health professionals' opinions]
Child; Humans; Intensive Care Units; Palliative Care; patient care team; Terminal Care; Attitude of Health Personnel; Withholding Treatment; Resuscitation Orders; Double Effect Principle; Suicide; Patient Rights; Pediatric; Health Surveys; France; Assisted; Health Care; Quality Assurance
INTRODUCTION AND OBJECTIVES: To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST) decisions, and their feelings about how these decisions were made and implemented. MATERIALS AND METHODS: A multicenter survey in 24 French PICUs during the fourth trimester 2010. RESULTS: One thousand three hundred and thirty-nine professional healthcare workers (1005 paramedics and 334 physicians) responded. Over 85% of caregivers had good knowledge of the WWLST decision-making processes required by law. More than 80% of caregivers accepted mechanical ventilation, hemodiafiltration, or hemodynamic support withdrawal or withholding. Nevertheless, the withdrawal of artificial nutrition and hydration generated reluctance or opposition for the majority of respondents. While paramedics' participation in the decision-making process was deemed necessary by all caregivers, paramedics found more often than physicians that they were insufficiently involved. The quality of end-of-life care was judged very positively by caregivers. The answers on how WWLST was applied suggest very different interpretations of the law. Some caregivers respect the principles of palliative care as stated in the public health code and 40% of doctors and 64% of caregivers consider it "acceptable" to hasten death if resulting from a collaborative decision-making process. CONCLUSION: This study is the first to show that caregivers of French PICUs have good knowledge of the French law concerning the end of life. Yet, there is still confusion about the limits of practice during the end-of-life period.
2014-01
de Saint Blanquat L; Cremer R; Elie C; Lesage F; Dupic L; Hubert P; pour le Groupe francophone de réanimation et urgences pédiatriques (GFRUP)
Archives De Pediatrie
2014
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).
Journal Article
<a href="http://doi.org/10.1016/j.arcped.2013.10.018" target="_blank" rel="noreferrer">10.1016/j.arcped.2013.10.018</a>
The impact of a palliative care team on residents' experiences and comfort levels with pediatric palliative care
Child; Female; Humans; Male; United States; Palliative Care; patient care team; Pediatrics; Adult; Attitude of Health Personnel; Questionnaires; Internship and Residency; Practice; Attitudes; Health Knowledge
BACKGROUND: 8,600 children are eligible for palliative care services each day in the US, yet many pediatric residents and pediatricians do not feel comfortable providing palliative/end of life care. OBJECTIVE: To evaluate the impact of a palliative care team (PCT) on pediatric and internal medicine/pediatric (IM/Peds) residents knowledge, comfort level and experience providing pediatric palliative care (PPC). DESIGN: Electronic 32-item questionnaire. SUBJECTS: Pediatric and IM/Peds residents at ACGME accredited programs during the 2011-2012 academic year. MEASUREMENTS: Residents' PPC training, knowledge, comfort levels and experiences. RESULTS: Nearly two-thirds of 294 respondents (63.6%; 95% CI: 58.2, 69.1) selected a description of PPC that describes palliative care as starting at the time of diagnosis regardless of treatment goals. Participants who reported the presence of a PCT at their institution selected this accurate description of PPC more often than those who did not report the presence of a PCT (72.3% vs. 53.3%; p<0.001, Fisher's Exact Test). Overall, 55.3% (95% CI: 49.2, 61.3) were comfortable providing PPC. Reporting the presence of a PCT was also associated with more comfort in providing PPC (p<0.01). CONCLUSIONS: Reported presence of a PCT may be associated with greater resident comfort in providing PPC and a more accurate understanding of PPC. There remains ample opportunity to educate pediatric and IM/Peds residents in PPC.
2014-01
Wu KL; Friderici J; Goff Sarah L
Journal Of Palliative Medicine
2014
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).
Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0227" target="_blank" rel="noreferrer">10.1089/jpm.2013.0227</a>
The lived experience of physicians dealing with patient death.
Female; Humans; Male; Terminal Care; Adult; Emotions; Middle Aged; Communication; Attitude to Death; Palliative Care/psychology; Physician-Patient Relations; Attitude of Health Personnel; Clinical encounter; Psychological care; Terminal Care/psychology
BACKGROUND: A growing body of research indicates that physicians suffer high levels of stress, depression and burnout. Related literature has found that physician stress can negatively impact patient care. This study builds upon previous research that found some dying patients experienced 'iatrogenic suffering' caused by the way physicians communicated with them regarding terminal diagnoses and palliative treatment. The goal of this research was to explore physicians' experiences of dealing with patient death in order to understand how such experiences affect them and their communication with patients. METHODS: This study used qualitative methods to conduct and analyse 10 individual, semistructured interviews with senior physicians from several specialty areas at a large, tertiary care hospital. The resulting themes were validated using member checks and expert review. RESULTS: This article presents five essential themes that provide a concise description of the lived experience of patient death for these physicians. INTERPRETATION: These themes indicate that physicians can experience very strong and lasting emotional reactions to some patient deaths, and also that patient death can elicit intense experiences related to professional responsibility and competence. A key finding is the description of a complex process of managing the balance between personal and professional reactions in the face of patient death. The implication is that difficulties negotiating this balance may lead to unintended lapses in compassion and suboptimal outcomes in patient care.
2014-09
Whitehead PR
Bmj Supportive & Palliative Care
2014
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Journal Article
<a href="http://doi.org/10.1136/bmjspcare-2012-000326" target="_blank" rel="noreferrer">10.1136/bmjspcare-2012-000326</a>
Young adults as users of adult healthcare: experiences of young adults with complex or life-limiting conditions
Female; Humans; Male; Young Adult; Great Britain; Adult; Parents; Attitude of Health Personnel; Inpatients; Health Services; Minority Groups
Awareness is growing that young adults may have distinctive experiences of adult healthcare and that their needs may differ from those of other adult users. In addition, the role of adult health teams in supporting positive transitions from paediatrics is increasingly under discussion. This paper contributes to these debates. It reports a qualitative study of the experiences of young adults - all with complex chronic health conditions - as users of adult health services. Key findings from the study are reported, including an exploration of factors that help to explain interviewees' experiences. Study findings are discussed in the context of existing evidence from young adults in adult healthcare settings and theories of 'young adulthood'. Implications for training and practice are considered, and priorities for future research are identified.
2014-08
Beresford B; Stuttard L
Clinical Medicine (london, England)
2014
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Journal Article
<a href="http://doi.org/10.7861/clinmedicine.14-4-404" target="_blank" rel="noreferrer">10.7861/clinmedicine.14-4-404</a>
Clinician perspectives regarding the do-not-resuscitate order
Female; Humans; Male; decision making; Critical Illness; Data Collection; Attitude of Health Personnel; Physicians; Boston; Resuscitation Orders; Nurses; Heart Arrest; advance care planning
IMPORTANCE: While data exist regarding the frequency and timing of the do-not-resuscitate (DNR) order in children, little is known about clinician attitudes and behaviors regarding this order. OBJECTIVE: To identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for pediatric patients. DESIGN: Physicians and nurses from practice settings where advance care planning typically takes place were surveyed regarding their attitudes and behaviors about DNR orders. RESULTS: In total, 107 physicians and 159 nurses responded to the survey (N = 266). There was substantial variability in the interpretation of the DNR order. Most clinicians (66.9%) believe that a DNR order indicates limitation of resuscitative measures only on cardiopulmonary arrest. In reality, however, more than 85% believe that care changes beyond response to cardiopulmonary arrest, varying from increased attention to comfort to less clinician attentiveness. In addition, most clinicians reported that resuscitation status discussions take place later in the illness course than is ideal. CONCLUSIONS AND RELEVANCE: Clinicians use the DNR order not only as a guide for therapeutic decisions during a cardiopulmonary arrest but also as a surrogate for broader treatment directives. Most clinicians believe that DNR discussions should take place earlier than they actually do. Interventions aimed at improving clinician knowledge and skills in advance care discussions as well as the development of orders that address overall goals of care may improve care for children with serious illness.
2013-10
Sanderson A; Zurakowski D; Wolfe J
Jama Pediatrics
2013
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).
Journal Article
<a href="http://doi.org/10.1001/jamapediatrics.2013.2204" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2013.2204</a>
Views of pediatric intensive care physicians on the ethics of organ donation after cardiac death
Female; Humans; Male; Intensive Care Units; Death; Attitude of Health Personnel; Physicians; Tissue and Organ Procurement; Pediatric
OBJECTIVE: Donation after cardiac death has been endorsed by professional organizations, including the American Academy of Pediatrics as a means of increasing the supply of transplantable organs. However, ethical concerns have been raised about donation after cardiac death, especially in children. This study explores the views of pediatric intensive care physicians on the ethics of pediatric donation after cardiac death. DESIGN: Internet survey. SUBJECTS: Physician members of the American Academy of Pediatrics Section of Critical Care. INTERVENTIONS: Physicians were emailed an anonymous survey consisting of four demographic items and 16 items designed to assess their views on the ethics of pediatric donation after cardiac death. Responses to ethics items were rated on a 5-point scale ranging from strongly disagree to strongly agree. Physicians were also given the opportunity to provide free-text comments regarding their views. MEASUREMENTS AND MAIN RESULTS: Of the 598 eligible physicians, 264 (44.1%) responded to the survey. Of these, 193 (73.4%) were practicing in a transplant center and 160 (60.6%) participated in at least one donation after cardiac death procedure at the time of survey completion. Two hundred twenty (83.4%) agreed or strongly agreed that regarding donation after cardiac death, parents should be able to make decisions based on the best interests of their child. Two hundred twenty-two (84.1%) agreed or strongly agreed that it is not acceptable to harvest organs from a child before the declaration of death, consistent with the Dead Donor Rule. However, only 155 (59.1%) agreed or strongly agreed that the time of death in donation after cardiac death can be conclusively determined. Twenty-nine (11.0%) agreed or strongly agreed that the pediatric donation after cardiac death donor may feel pain or suffering during the harvest procedure. CONCLUSIONS: Most pediatric intensive care physicians agree that the Dead Donor Rule should be applied for donation after cardiac death and that donation after cardiac death can be consistent with the best interest standard. However, concerns about the ability to determine time of death for the purpose of organ donation and the possibility of increasing donor pain and suffering exist.
2013-07
Sarnaik AA; Clark JA; Meert KL; Sarnaik AP
Critical Care Medicine
2013
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Journal Article
<a href="http://doi.org/10.1097/CCM.0b013e31828a219e" target="_blank" rel="noreferrer">10.1097/CCM.0b013e31828a219e</a>
Characteristics of family conferences at the bedside versus the conference room in pediatric critical care
Child; Female; Humans; Male; Intensive Care Units; patient care team; decision making; Cohort Studies; Health Care Surveys; Parents; Attitude of Health Personnel; Questionnaires; Prospective Studies; Professional-Family Relations; Physicians; Patient Participation; Intensive Care; Pediatric
OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians (90.9%) providing care to 29 patients whose families participated in 58 family conferences. MEASUREMENTS AND MAIN RESULTS: Family conferences, defined as a meeting involving the parent(s) of a PICU patient and the critical care attending physician to discuss a treatment decision, redirection of care from curative to palliative, or deliver bad news, occurred most commonly among families of the sickest patients. Conferences were conducted at the bedside 20 times out of 58 (33%). Although physicians stated a general preference to discuss withdrawal or withholding care in the conference room, there was no difference in location during actual conferences. Physicians preferred the bedside when they wanted the patient to participate (p = 0.01) or because it was perceived to be easier (p < 0.0005) or faster (p = 0.016) to conduct, while the conference room was preferred when additional space was needed (p < 0.0005). Family conferences at the bedside were less likely to include a social worker (p < 0.0005), consultant physicians (p = 0.043), or father of the patient (p = 0.006) as compared with conferences in a conference room. Family conferences convened to discuss a treatment were followed by a decision within 24 hours (42% of the time) and a change in code status (32% of the time). In 32 of 58 family conferences (55%), the attending physician did not have a prior relationship with the family. CONCLUSION: Family conferences in the PICU are common both at the bedside and in conference rooms in a subpopulation of the most critically ill children and frequently result in a treatment decision or change in code status.
2013-03
October TW; Watson Anne C; Hinds PS
Pediatric Critical Care Medicine
2013
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).
Journal Article
<a href="http://doi.org/10.1097/PCC.0b013e318272048d" target="_blank" rel="noreferrer">10.1097/PCC.0b013e318272048d</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>
Case study: the Interact Home Telehealth Project
adolescent; Child; Female; Humans; infant; Male; Young Adult; home care services; Pediatrics; Adult; Attitude of Health Personnel; New South Wales; Aged; Middle Aged; Pilot Projects; Patient Satisfaction; Telemedicine; Computers; Palliative Care; Preschool; Brain Injuries; Monitoring; health promotion; Stroke; Ambulatory; Handheld
Two home telehealth technologies (the Intel Health Guide and the Apple iPad) were trialled by four clinical services of the Hunter New England Local Health District. The iPad was selected by the Paediatric Palliative Care Service, the Stroke Service and the Brain Injury Rehabilitation Service. The Intel Health Guide was selected by the Cardiac Coaching Service. The telehealth devices were loaned to a total of 102 patients for different lengths of time, depending on clinical needs, but typically for about 3 months. A total of 42 clinicians were involved. During the trial, 16 technical problems were recorded and resolved, most concerning problems with connectivity. Nonetheless, the use of home telehealth technologies was positively received by clinicians, management and patients alike. Telehealth is now being integrated into the standard practices of the health district.
2013-10
Katalinic O; Young A; Doolan D
Journal Of Telemedicine And Telecare
2013
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Journal Article
<a href="http://doi.org/10.1177/1357633X13506513" target="_blank" rel="noreferrer">10.1177/1357633X13506513</a>
Parents' perspectives on the deaths of their children in two Brazilian paediatric intensive care units
Child; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; Adult; Parents; Attitude of Health Personnel; Attitude to Death; Professional-Family Relations; Communication; Brazil; Pediatric; Preschool; Quality of Health Care
OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative, exploratory study. Parents of a child who had died in one of the PICUs 6-12 months previously were invited to take part in two interviews: a private meeting with the PICU assistant physician who cared for their child, to discuss and review any outstanding issues related to the diagnosis, treatment, and prognosis, and a recorded interview with a researcher who was not involved in the child's treatment. Data from the interviews with the researcher were posteriorly grouped in categories according to recurrent terms. RESULTS: Six categories emerged, three of which are reported here. The quality of communication was low; the medical staff frequently used technical terms, limiting understanding. Parental participation in the decision-making process was scarce; decisions were based on the medical perspective. Finally, families reported uncompassionate attitudes from the medical staff and excessive technology in the final moments surrounding the child's death, although nurses were highly involved with palliative care measures and demonstrated sympathetic and supportive postures. CONCLUSION: The interviews uncovered deficiencies in the care provided to parents in the PICUs, indicating a need for changes in practice.
2013-10
Abib El Halal Gilda MC; Piva JP; Lago PM; El Halal MGS; Cabral FC; Nilson C; Garcia Pedro CR
International Journal Of Palliative Nursing
2013
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2013.19.10.495" target="_blank" rel="noreferrer">10.12968/ijpn.2013.19.10.495</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>
Neonatologist training to guide family decision making for critically ill infants
Humans; infant; United States; Critical Illness; Attitude of Health Personnel; Education; Questionnaires; Professional-Family Relations; Communication; Clinical Competence; Linear Models; Fellowships and Scholarships; Internet; Medical; decision making; infant; Newborn; Premature; Neonatology/education; Graduate; Nonparametric; Statistics
OBJECTIVES: To assess neonatology fellow training in guiding family decision making for high-risk newborns and in several critical communication skills for physicians in these scenarios. DESIGN: A Web-based national survey. SETTING: Neonatal-perinatal training programs in the United States. PARTICIPANTS: Graduating fellows in their final month of fellowship. MAIN OUTCOME MEASURES: Fellows' perceived training and preparedness to communicate with families about decision making. RESULTS: The response rate was 72%, representing 83% of accredited training programs. Fellows had a great deal of training in the medical management of extremely premature and dying infants. However, they reported much less training to communicate and make collaborative decisions with the families of these infants. More than 40% of fellows reported no communication training in the form of didactic sessions, role play, or simulated patient scenarios and no clinical communication skills training in the form of supervision and feedback of fellow-led family meetings. Fellows felt least trained to discuss palliative care, families' religious and spiritual needs, and managing conflicts of opinion between families and staff or among staff. Fellows perceived communication skills training to be of a higher priority to them than to faculty, and 93% of fellows feel that training in this area should be improved. CONCLUSIONS: Graduating neonatology fellows are highly trained in the technical skills necessary to care for critically ill and dying neonates but are inadequately trained in the communication skills that families identify as critically important when facing end-of-life decisions.
2009
Boss RD; Hutton N; Donohue PK; Arnold RM
Archives Of Pediatrics & Adolescent Medicine
2009
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Journal Article
<a href="http://doi.org/10.1001/archpediatrics.2009.155" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.155</a>
Comparing pediatric deaths with and without hospice support
Child; Humans; Palliative Care; Terminal Care; Pediatrics; Attitude of Health Personnel; Michigan; quality of life; retrospective studies; hospice care
BACKGROUND: Although pediatric hospice care is commonly accepted as a beneficial intervention, the incremental advantage over end-of-life care delivered without engaging hospice remains unknown. The primary objective of this study was to describe differences in pediatric end-of-life care when delivered with and without hospice support, as perceived by the medical provider. PROCEDURE: A retrospective survey of medical providers was conducted in 2005 over a 2-month period at a single institution, the Helen DeVos Children's Hospital (HDVCH). Medical providers with self-determined experience in pediatric end-of-life care were asked to separately provide positive and negative comments about their experience with hospice. Additionally they were asked to describe differences between children under their supervision who died with and without hospice care. Medical provider comments and comparisons of experiences in caring for children dying with and without hospice involvement are described. RESULTS: Out of 157 responders, 43 reported positive comments about the hospice intervention. Non-medical support and location of death were the most frequently cited benefits. Nineteen responders provided negative comments about hospice; all involving feelings of lost hope, intrusion, or distrust. When asked to directly compare deaths with and without hospice support, 44 of 51 (86%) responders favored hospice. The most cited reason for preferring hospice involvement was better provision of non-medical services. CONCLUSIONS: The majority of pediatric providers in this survey observed an advantage to utilizing hospice care for dying children as compared to providing end-of-life care without hospice involvement.
2010
Dickens DS
Pediatric Blood & Cancer
2010
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Journal Article
<a href="http://doi.org/10.1002/pbc.22413" target="_blank" rel="noreferrer">10.1002/pbc.22413</a>
Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe
Child; Humans; United States; Adult; Attitude of Health Personnel; Questionnaires; Continuity of Patient Care; Europe; adolescent; Adolescent Transitions; retrospective studies; Heart Defects; Congenital/therapy; Patient Transfer/statistics & numerical data
The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric cardiology programs in the United States and Europe was undertaken. Sixty-nine centers completed and returned the 61-item questionnaire that was specifically devised for this survey. Of 69 participating centers, 74% reported that they transfer their patients to adult-focused care. When a center transfers its patients, 80% transfer them to a formalized Adult Congenital Heart Disease Program. The median age of transfer is 18 years. Comorbidities, pregnancy, and patient/family request to leave pediatric cardiology were identified as initiators for transfer. Complexity of the heart defect was relatively less important when deciding whether to transfer patients. Only one-third of the centers that transfer their patients provide a structured preparation for patients and family. Development of a formal transition program is planned at 59% of the centers that transfer patients. In conclusion, timely transfer and a structured transition process of children with CHD are not implemented in all pediatric cardiology programs. Health-care providers working in pediatric cardiology should make their transfer policies explicit and transition programs ought to be developed.
2009
Hilderson D; Saidi AS; Van Deyk K; Verstappen A; Kovacs AH; Fernandes SM; Canobbio MM; Fleck D; Meadows A; Linstead R; Moons P
Pediatric Cardiology
2009
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).
Journal Article
<a href="http://doi.org/10.1007/s00246-009-9442-1" target="_blank" rel="noreferrer">10.1007/s00246-009-9442-1</a>
Death by request in the Netherlands: facts, the legal context and effects on physicians, patients and families
Humans; Attitude of Health Personnel; Euthanasia; Netherlands; Religion and Medicine; Suicide; Active; Attitude to Death; Euthanasia; Physicians/px [Psychology]; Suicide; Assisted/es [Ethics]; Assisted/lj [Legislation & Jurisprudence]; Assisted/px [Psychology]; Ethical Review/lj [Legislation & Jurisprudence]; Physician Assisted Dying PAD; Voluntary/es [Ethics]; Voluntary/lj [Legislation & Jurisprudence]; Voluntary/px [Psychology]
2010
Kimsma GK
Medicine, Health Care And Philosophy
2010
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).
Journal Article
<a href="http://doi.org/10.1007/s11019-010-9265-0" target="_blank" rel="noreferrer">10.1007/s11019-010-9265-0</a>