The Lived Experiences of Nurses Caring For Dying Pediatric Patients
Nursing Care
Nurses and healthcare professionals may have difficulty adjusting to and comprehending their experiences when a patient's life ends. This has the potential to interfere with patient care. Reflection on past events and actions enables critical discovery of strategies to benefit both nurses and patients. This qualitative phenomenological study explores the lived experiences of nurses caring for dying pediatric patients. The philosophical underpinning of Merleau-Ponty (2008), in combination with the research method of van Manen (1990), was used for this study. The Roy Adaptation Model (RAM) (Roy, 2009; Roy & Andrews, 1991) was the nursing model that guided the study to help understand that nurses are an adaptive system, using censoring as a compensatory adaptive process to help function for a purposeful cause. Nine female nurse participants with one to four years of experience were interviewed. The context of the experiences told by nurses caring for dying pediatric patents uncovered seven essential themes of empathy, feelings of ambivalence, inevitability, inspiration, relationship, self-preservation, and sorrow, and these themes demonstrated a connection formed between the nurse and the patient.
Curcio DL
Pediatric Nursing
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).
Partnering with Payers to Meet the Needs of Pediatric Palliative Care Patients (FR473)
Palliative Care
Cunningham MJ; Williamson S; Baker JN; Pennington K; Young A; Bolick R; Norton C
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.12.144" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.144</a>
Incorporating Bereaved Parents as Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care (FR452)
terminal care; Bereavement; Terminal Care
Snaman JM; Kaye E; Levine DR; Clark L; Wilcox R; Cunningham MJ; Baker JN
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.12.128" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.128</a>
It Takes a Village: Building a Culture of Mentorship and Sponsorship to Thrive Throughout Our Careers (FR409)
Lamba S; Sudore R; Buckholz GT; Radwany SM; Wolfe J
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.12.089" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.089</a>
Effect of Permanent Feeding Tube Placement on Healthcare Utilization Among Children with Neurologic Impairment (TH340A)
Child; Enteral Nutrition; Only Child; child
Nelson K; Rosella L; Mahant S; Guttmann A; Cohen E
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.12.041" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.041</a>
Family Satisfaction with Symptom Management Practices and Child Comfort During Pediatric Hematopoietic Stem Cell Transplant (TH320C)
Stem Cell Transplantation; Hematopoietic Stem Cells
Ullrich C; Levine DR; Li Anran; Ma Clement; Wolfe J; Holder R
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.12.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.025</a>
Changes Over Time in Good-Parent Beliefs Among Parents of Children with Serious Illness: Two Year Cohort Study (TH320B)
Child; Cohort Studies; Only Child; child
Hill D; Faerber J; Carroll K; Miller V; Morrison W; Hinds P; Feudtner C
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.12.024" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.024</a>
Walking the Line Between Hope And Hype: Palliative Care in the Era of New and Expensive Neuromuscular Therapies for Children and Adults (TH317)
Palliative Care; Walking
Noritz G; Feudtner C
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.12.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.020</a>
We Built It…They All Came…Now How to Keep from Drowning? Pediatric Palliative Care Program Development 202: Skills in Your Toolbox for Growth and Sustainability (P20)
Palliative Care; Program Development; Drowning; Near Drowning
Kang T; Lotstein D; Humphrey L; Klick J; Williams C
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.11.080" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.11.080</a>
Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis
terminal care; Neuromuscular Diseases; Terminal Care
End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of patients affected by such conditions die without a formal end of life plan in place. We performed a systematic review to investigate conversations regarding end of life care between healthcare professionals and younger adult patients with life-limiting neuromuscular diseases. The search strategy included terms that focused on death and dying along with other factors that could impact length of life. The review found a very limited body of literature regarding end of life care conversations between young people affected by neuromuscular diseases and health professionals. The views and preferences of patients themselves have not been investigated. There is a shared reluctance of patients, family carers and healthcare professionals to initiate end of life care discussions. There are many factors that need to be investigated further in order to develop a consensus that would allow healthcare professionals to engage patients in end of life care conversations allowing them to face the end of their lives with appropriate plans in place.
Hiscock A; Kuhn I; Barclay S
Neuromuscular Disorders
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.nmd.2016.11.011" target="_blank" rel="noreferrer noopener">10.1016/j.nmd.2016.11.011</a>
Speaking a Different Language: A Qualitative Analysis Comparing Language of Palliative Care and Pediatric Intensive Care Unit Physicians
Child; Communication; Critical Care; Female; Human; Inpatients; Intensive Care Units; Language; Male; Palliative Care; Pediatric; Physicians; Support; Preschool; Retrospective Design; Descriptive Statistics; In Infancy and Childhood; Audiorecording; child; human; female; male; Content Analysis; Field Notes; Fisher's Exact Test; Funding Source; Kappa Statistic; Mann-Whitney U Test; Patient-Family Conferences; Record Review; Psychosocial
Background: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. Aim: To compare language used by PC team and ICU physicians during family conferences. Design: A retrospective cohort review of ICU family conferences with and without the PC team. Setting: Forty-four bed pediatric ICU in a tertiary medical center. Participants: Nine ICU physicians and 4 PC providers who participated in 18 audio-recorded family conferences.
Ciriello AG; Dizon Zoelle B; October Tessie W
American Journal of Hospice & Palliative Medicine
2017
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<a href="http://doi.org/10.1177/1049909117700101" target="_blank" rel="noreferrer noopener">10.1177/1049909117700101</a>
A Review of the Integrated Model of Care: An Opportunity to Respond to Extensive Palliative Care Needs in Pediatric Intensive Care Units in Under-Resourced Settings
Humanities; pediatric intensive care; Child; Health Resources; Humans; Intensive Care Units; Only Child; Palliative Care; Pediatric; pediatric palliative care; child; consultative model; Humanism; integrated model of care; low-resource settings; pediatric critical care; Pediatric Palliative Screening Scale
It is estimated that 6.3 million children who die annually need pediatric palliative care (PPC) and that only about 10% of them receive the attention they need because about 98% of them live in under-resourced settings where PPC is not accessible. The consultative model and the integrated model of care (IMOC) are the most common strategies used to make PPC available to critically ill children. In the consultative model, the pediatric intensive care unit (PICU) team, the patient, or their family must request a palliative care (PC) consultation with the external PC team for a PICU patient to be evaluated for special care needs. While the consultation model has historically been more popular, issues related to specialist availability, referral timing, staff's personal biases, misconceptions about PC, and other factors may impede excellent candidates from receiving the attention they need in a timely manner. Contrastingly, in the IMOC, family-centered care, PC tasks, and/or PC are a standard part of the treatment automatically available to all patients. In the IMOC, the PICU team is trained to complete critical and PC tasks as a part of normal daily operations. This review investigates the claim that the IMOC is the best model to meet extensive PPC needs in PICUs, especially in low-resource settings; based on an extensive review of the literature, we have identified five reasons why this model may be superior. The IMOC appears to: (1) improve the delivery of PPC and pediatric critical care, (2) allow clinicians to better respond to the care needs of patients and the epidemiological realities of their settings in ways that are consistent with evidence-based recommendations, (3) facilitate the universal delivery of care to all patients with special care needs, (4) maximize available resources, and (5) build local capacity; each of these areas should be further researched to develop a model of care that enables clinicians to provide pediatric patients with the highest attainable standard of health care. The IMOC lays out a pathway to provide the world's sickest, most vulnerable children with access to PPC, a human right to which they are entitled by international legal conventions.
Grunauer M; Mikesell C
Frontiers in Pediatrics
2018
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<a href="http://doi.org/10.3389/fped.2018.00003" target="_blank" rel="noreferrer noopener">10.3389/fped.2018.00003</a>
Associations Between Pediatric Palliative Care Consultation and End-of-Life Preparation at an Academic Medical Center: A Retrospective EHR Analysis
Academic Medical Centers; Palliative Care; Referral and Consultation
OBJECTIVES: Our aim in this study was to understand usage patterns of pediatric palliative care (PPC) consultation and associations with end-of-life preparation among pediatric patients who are deceased. METHODS: We reviewed 233 pediatric mortalities. Data extraction from the electronic health record included determination of PPC consultation by using Current Procedural Terminology codes. Diagnoses were identified by International Classification of Disease codes and were classified into categories of life-threatening complex chronic conditions (LT-CCCs). Data analysis included Student's t test, Wilcoxon rank test, Fisher's exact test, chi(2) test, and multivariable logistic regression. RESULTS: The overall PPC consultation rate for pediatric patients who subsequently died was 24%. A PPC consultation for patients admitted to the pediatric ward and PICU was more likely than for patients cared for in the NICU (31% vs 12%, P < .01) and was more likely for those with an LT-CCC (40% vs 10%, P < .01), particularly malignancy (65% vs 35%, P < .01). Also noted were increased completion of Physician Orders for Life-Sustaining Treatment forms (8 vs 0, P < .01) and increased documentation of mental health disorders (60% vs 40%, P = .02). CONCLUSIONS: Our findings suggest that PPC consultation for patients in the pediatric ward and PICU is more likely among patients with a greater number of LT-CCCs, and is associated with increased Physician Orders for Life-Sustaining Treatment preparation and documentation of mental health disorders. Patients at risk to not receive PPC consultation are those with acute illness and patients in the NICU.
Stutz M; Kao RL; Huard L; Grotts J; Sanz J; Ross MK
Hospital Pediatrics
2018
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<a href="http://doi.org/10.1542/hpeds.2017-0016" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2017-0016</a>
Physician Perspectives on Palliative Care for Children with Advanced Heart Disease: A Comparison between Pediatric Cardiology and Palliative Care Physicians
pediatric end-of-life care; Child; Only Child; Palliative Care; Physicians; Referral and Consultation; pediatric palliative care; child; advanced heart disease; pediatric heart failure; physician perspectives
BACKGROUND: While the importance of pediatric palliative care (PPC) for children with life-threatening illness is increasingly recognized, little is known about physicians' attitudes toward palliative care for children with heart disease. OBJECTIVE: To compare the perspectives of PPC physicians and pediatric cardiologists regarding palliative care in pediatric heart disease. DESIGN: Cross-sectional web-based surveys. RESULTS: Responses from 183 pediatric cardiologists were compared to those of 49 PPC physicians (response rates 31% [183/589] and 28% [49/175], respectively). Forty-eight percent of PPC physicians and 63% of pediatric cardiologists agreed that availability of PPC is adequate (p = 0.028). The majority of both groups indicated that PPC consultation occurs "too late." Compared with pediatric cardiologists, PPC physicians reported greater competence in all areas of advance care planning, communication, and symptom management. PPC physicians more often described obstacles to PPC consultation as "many" or "numerous" (42% vs. 7%, p < 0.001). PPC physicians overestimated how much pediatric cardiologists worry about PPC introducing inconsistency in approach (60% vs. 11%, p < 0.001), perceive lack of added value from PPC (30% vs. 7%, p < 0.001), believe that PPC involvement will undermine parental hope (65% vs. 44%, p = 0.003), and perceive that PPC is poorly accepted by parents (53% vs. 27%, p < 0.001). CONCLUSIONS: There are significant differences between pediatric cardiologists and PPC physicians in perception of palliative care involvement and perceived barriers to PPC consultation. An intervention that targets communication and exchange of expertise between PPC and pediatric cardiology could improve care for children with heart disease.
Balkin EM; Sleeper LA; Kirkpatrick JN; Swetz KM; Coggins MK; Wolfe J; Blume ED
Journal of Palliative Medicine
2018
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<a href="http://doi.org/10.1089/jpm.2017.0612" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0612</a>
Self-Assessment of Skills and Competencies among Residents Participating in a Pediatric Hospice and Palliative Medicine Elective Rotation
education; Academic Medical Centers; Education; Health Services Accessibility; Hospice Care; Hospices; Human; Internal Medicine; Palliative Care; Pediatric Care; Social Behavior; Terminally Ill Patients; Time Factors; Psychosocial Factors; human; Course Evaluation; Interns and Residents; Pediatricians; Professional Development; Rotation; Self Assessment; Social Skills; Surveys; Tertiary Health Care
OBJECTIVE: To describe our institutional experience with a four-week pediatric HPM elective rotation and its impact on residents' self-rated competencies. BACKGROUND: In the spirit of bolstering primary hospice and palliative medicine (HPM) skills of all pediatricians, it is unclear how best to teach pediatric HPM. An elective rotation during residency may serve this need. METHODS: An anonymous online survey was distributed to pediatric and internal medicine/pediatrics residents at a single, tertiary academic children's hospital. Respondents were asked to rate education, experience, and comfort with five aspects of communication with families of children with terminal illnesses and six domains of managing the symptoms of terminal illnesses. Self-ratings were recorded on a 1-5 scale: none, minimal, moderate, good, or excellent. Demographic data, including details of training and prior HPM training, were collected. Respondents completed a set of six questions gauging their attitude toward palliative care in general and at the study institution specifically. RESULTS: All respondents desire more HPM training. Those residents who self-selected to complete a pediatric HPM elective rotation had significantly higher self-ratings in 10 of 11 competency/skill domains. Free-text comments expressed concern about reliance on the specialty HPM team. DISCUSSION: A pediatric HPM elective can significantly increase residents' self-rated competency. Such rotations are an under-realized opportunity in developing the primary HPM skills of pediatricians, but wider adoption is restricted by the limited availability of pediatric HPM rotations and limited elective time during training.
Rossfeld ZM; Tumin D; Humphrey L
Journal of Palliative Medicine
2018
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<a href="http://doi.org/10.1089/jpm.2017.0201" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0201</a>
Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis
congenital abnormality; Bereavement; Bereavement; Female; Humans; Infant; Interviews as Topic; Male; Newborn; Parents; Parents/ psychology; Pregnancy; Qualitative Research; Twins; palliative care; qualitative; Perinatal Death; Qualitative research; female; male; perinatal death; bereavement; Twins; twins
BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal risk, with higher rates of perinatal mortality than in singleton pregnancy. OBJECTIVES: To date, few studies have examined the effect of the loss of one twin diagnosed with a congenital abnormality during pregnancy. This study aims at gaining insight into parents' views to explore the impact of death of one twin in the perinatal period. DESIGN: A qualitative study was undertaken by utilizing interpretative phenomenological analysis. Nine parents who have experienced perinatal loss, all of whom had a prenatal diagnosis of congenital abnormality, participated in in-depth semi-structured interviews. RESULTS: Parents recounted how distressed they were when initially informed that there was a complication. On diagnosis, parents began a complex palliative journey, proceeding in the pregnancy and grieving one baby while trying to ensure the welfare of the co-twin. As parents were encouraged to focus on the "normal" twin, they felt their opportunity to grieve was diminished. It was important that the surviving twin would be identified as a twin and know of their sibling. However, parents conveyed feelings of deep sadness, because this was also a reminder that one twin would always be missing. CONCLUSIONS: Parents were not prepared for the complications they experienced in pregnancy. Clear and appropriate information in relation to perinatal palliative care should be provided to parents in twin pregnancies discordant for fetal abnormality.
Meaney S; Corcoran P; O'Donoghue K
Journal of Palliative Medicine
2017
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<a href="http://doi.org/10.1089/jpm.2016.0264" target="_blank" rel="noreferrer noopener">10.1089/jpm.2016.0264</a>
Palliative care professional's perceptions of barriers and challenges to accessing children's hospice and palliative care services in south east London: A preliminary study
Child; Only Child; Palliative Care; children; hospice; paediatric; palliative care; child; barriers and challenges
OBJECTIVES: Several barriers have been identified as preventing or delaying accessing to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London boroughs. METHODS: Qualitative- five children's palliative care professionals perceptions obtained from semi-structured interviews. RESULTS: Three themes emerged: availability and adequacy of child palliative care (e.g., unreliability of services), obstacles to accessing palliative care (e.g., logistical challenges) and cultural values and family priorities. CONCLUSION: These findings contribute to the equal opportunities dialogue in this sector and the need for future research to address the challenges identified.
Pentaris P; Papadatou D; Jones A; Hosang GM
Death Studies
2018
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<a href="http://doi.org/10.1080/07481187.2018.1430081" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1430081</a>
Use of Facebook in the maternal grief process: An exploratory qualitative study
Exploratory Research; Grief; Human; Qualitative Studies; Research Subjects; Social Media; Support; Women; grief; Semi-Structured Interview; human; Thematic Analysis; Maternal Attitudes; Social Networks; Utilization; Psychosocial
This study seeks to explore the potential implications of Facebook use in the process of maternal grief. The participants were 11 women who had lost their children due to accidents or prolonged illness. Semistructured interviews were conducted and subjected to thematic analysis. The participants stated that they used Facebook to receive support, to identify with other mothers, to remember the child who died, to access the child's information, to honor him/her, and to express their feelings. The use of Facebook can play a very important role in the initial phase of grieving due to the functions of this social network.
Perluxo D; Francisco R
Death Studies
2018
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<a href="http://doi.org/10.1080/07481187.2017.1334011" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1334011</a>
A cross-sectional pilot study of compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) in pediatric palliative care (PPC) providers in the United States
Fatigue; Palliative Care; Pilot Projects; United States; burnout; pediatric palliative care; Cesarean Section; Compassion fatigue; compassion satisfaction
OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Compassion satisfaction (CS) is emotional fulfillment derived from caring for others. The literature on BO in healthcare providers is extensive, whereas CF and CS have not been comprehensively studied. Because of ongoing exposure to patient and family distress, pediatric palliative care (PPC) providers may be at particular risk for CF. We conducted a cross-sectional pilot study of CF, BO, and CS among PPC providers across the United States. METHOD: The Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of professional and personal characteristics were distributed electronically and anonymously to PPC physicians and nurses. Logistic and linear regression models for CF, BO, and CS as a function of potential risk factors were constructed. RESULTS: The survey response rate was 39%, primarily consisting of female, Caucasian providers. The prevalence of CF, BO, and CS was 18%, 12%, and 25%, respectively. Distress about a "clinical situation," physical exhaustion, and personal loss were identified as significant determinants of CF. Distress about "coworkers," emotional depletion, social isolation, and "recent involvement in a clinical situation in which life-prolonging activities were not introduced" were significant determinants of BO. Physical exhaustion, personal history of trauma, "recent involvement in a clinical situation in which life-prolonging activities were not introduced," and not discussing distressing issues were significant predictors of lower CS scores. Significance of results CF and BO directly influence the well-being and professional performance of PPC providers. To provide effective compassionate care to patients, PPC providers must be attentive to predictors of these phenomena. Further work is needed to explore additional causes of CF, BO, and CS in PPC providers as well as potential interventions.
Kase SM; Waldman ED; Weintraub AS
Palliative and Supportive Care
2018
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<a href="http://doi.org/10.1017/s1478951517001237" target="_blank" rel="noreferrer noopener">10.1017/s1478951517001237</a>
Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey
Caregivers; Child; Child Care; Only Child; Dravet syndrome; child; Caregiver burden; EuroQoL 5D-5L; Oberst Caregiving Burden Scale; Supportive services; Epilepsies; Myoclonic
OBJECTIVE: The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. METHODS: We surveyed DS caregivers at a single institution with a large population of patient with DS. Survey domains included time spent/difficulty performing caregiving tasks (Oberst Caregiving Burden Scale, OCBS); caregiver health-related quality of life (EuroQoL 5D-5L, EQ-5D); and work/activity impairment (Work Productivity and Activity Impairment questionnaire, WPAI). Modified National Health Interview Survey (NHIS) questions were included to assess logistical challenges associated with coordinating medical care. RESULTS: Thirty-four primary caregivers responded, and 30/34 respondents completed the survey. From OCBS, providing transportation, personal care, and additional household tasks required the greatest caregiver time commitment; arranging for child care, communication, and managing behavioral problems presented the greatest difficulty. EuroQoL 5D-5L domains with the greatest impact on caregivers (0=none, 5=unable/extreme) were anxiety/depression (70% of respondents>/=slight problems, 34%>/=moderate) and discomfort/pain (57% of respondents>/=slight problems, 23%>/=moderate). The mean EQ-5D general health visual analogue scale (VAS) score (0=death; 100=perfect health) was 67 (range, 11-94). Respondents who scored <65 were two- to fourfold more likely to report >/=moderate time spent and difficulty managing child behavior problems and assisting with walking, suggesting that children with DS with high degrees of motor or neurodevelopmental problems have an especially high impact on caregiver health. On the WPAI, 26% of caregivers missed >1day of work in the previous week, with 43% reporting substantial impact (>/=6, scale=1-10) on work productivity; 65% reported switching jobs, quitting jobs, or losing a job due to caregiving responsibilities. National Health Interview Survey responses indicated logistical burdens beyond the home; 50% of caregivers made >/=10 outpatient visits in the past year with their child with DS. CONCLUSIONS: Caring for patients with DS exerts physical, emotional, and time burdens on caregivers. Supportive services for DS families are identified to highlight an unmet need for DS treatments.
Campbell JD; Whittington MD; Kim CH; VanderVeen GR; Knupp KG; Gammaitoni A
Epilepsy & Behavior
2018
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<a href="http://doi.org/10.1016/j.yebeh.2018.01.003" target="_blank" rel="noreferrer noopener">10.1016/j.yebeh.2018.01.003</a>
Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship when a Child is Dying in the Pediatric Intensive Care Unit
Child death; Parent; intensive care; Bereavement; Child; Intensive Care; Intensive Care Units; Only Child; Pediatric; Pediatric intensive care unit; Grounded theory; child; Nurse; Relationship
PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded theory was used to undertake this study. Semi-structured interviewers were conducted with 26 bereaved parents recruited from four Australian pediatric intensive care units. The constant comparative method, coupled with open, focused, and theoretical coding were used for data analysis. RESULTS: Becoming a team explores the changes that occurred to the parent-healthcare provider relationship when parents realized their child was dying and attempted to become part of their child's care team. When the focus of care changed from 'life-saving' to 'end-of-life', parents' perspectives and desires of their and the healthcare providers' roles changed. Parents' attempted to reconstruct their roles to match their changing perspectives, which may or may not have been successful, depending on their ability to successfully negotiate these roles with healthcare providers. CONCLUSIONS: Findings offer insights into parental understandings of both the parental and healthcare provider roles for parents of dying children in intensive care, and the ways in which the parent-healthcare provider relationships can influence and be influenced by changes to these roles. PRACTICE IMPLICATIONS: Successful parent-healthcare provider relationships require an understanding of the parental and healthcare provider role from the parents' perspective. The meanings of the parental and healthcare provider roles should be explored with parents of dying children, and supported as much as possible to enable the development of a collaborative relationship.
Butler AE; Hall H; Copnell B
Journal of Pediatric Nursing
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/10.1016/j.pedn.2018.02.002" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.02.002</a>
Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
prognosis; Infant; Intensive Care Units; Medical Futility; Neonatal; Newborn; Parents; Prognosis; ethics; moral distress; prematurity; gray zone; Nicu; parent experiences; poor prognosis
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible neonates at 2 institutions underwent audiotaped, semistructured interviews while their infants were still in the hospital and then again 6 months to 1 year after discharge or death. Interviews were transcribed and data were analyzed using thematic analysis. Two authors independently reviewed and coded each interview and discrepancies were resolved by consensus. RESULTS: Twenty-six families were interviewed in the initial group and 17 families were interviewed in the follow-up group. The most common themes identified included realism about death (24 families), appreciation for the infant's care team (23 families), and optimism and hope (22 families). Overall themes were very similar across both centers, and among parents of infants who died and those who survived. Themes of regret, futility, distrust of care team, and infant pain were brought up infrequently or not at all. CONCLUSIONS: No family believed that the care being provided to their infant was futile; rather, parents were grateful for the care provided to their infant, regardless of outcome. Even in the case of a poor prognosis or the death of an infant, families in our study viewed their infant's stay in the neonatal intensive care unit favorably.
Arnolds M; Xu L; Hughes P; McCoy J; Meadow W
Journal of Pediatrics
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/10.1016/j.jpeds.2017.12.050" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2017.12.050</a>
Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study
pediatrics; Attitude to Health; Adolescent; Adult; Attitude to Death; Child; Cohort Studies; Female; Health Surveys; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Only Child; Parents/ psychology; Pediatrics; Prevalence; Quality of Life/ psychology; Terminal Care/ psychology; Young Adult; decision-making; problems; Parent-Child Relations; Hope; Preschool; serious illness; child; female; male; young adult; adult; Child Health/statistics & numerical data; Critical Illness/epidemiology/ psychology; hopes; parental concordance; Philadelphia/epidemiology
CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time. METHODS: Eighty-four parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. Thirty-two parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into nine domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately. RESULTS: The most common major problem and hope domains at baseline were physical body, quality of life, future health and well-being, and medical care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance. CONCLUSION: Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify.
Hill DL; Nathanson PG; Fenderson RM; Carroll KW; Feudtner C
Journal of Pain and Symptom Management
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.jpainsymman.2016.11.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2016.11.007</a>
End-of-life care of children with diffuse intrinsic pontine glioma
Palliative care; terminal care; Child; End-of-life care; Only Child; Palliative Care; Pediatric oncology; Terminal Care; child; Diffuse intrinsic pontine glioma (DIPG); Glioma
The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative care provision for these children. Our objective was to describe the dying trajectory of children with DIPG, their symptoms, the care they require and the end-of-life decisions made for them. This retrospective cohort study analyzed the end-of-life care of 41 consecutive patients with DIPG who died between January 2001 and June 2010. All patients died of disease progression, experiencing a significant symptom burden prior to death. Despite this, the majority of patient days at the end of life were spent at home. However, 60% of patients were hospitalized at least once in their final 3 months, often close to the time of death. A wide range of healthcare professionals were involved, providing a range of medicinal/non-medicinal interventions. Chemotherapy was given to 30% of patients in their final month. Thirty of 33 families approached (91%) agreed to a "Do not resuscitate" order. A small subset of families opted for intensive treatment towards the end of life including cardiopulmonary resuscitation, intensive care admission and mechanical ventilation. Children with DIPG have complex needs and require intensive multidisciplinary support. This paper describes the end-of-life choices made for these children and discusses how these choices influence our institutional model for palliative care. We believe this approach will be useful to clinicians caring for similar patients.
Hasan F; Weingarten K; Rapoport A; Bouffet E; Bartels U
Journal of Neuro-Oncology
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/s11060-018-2781-0" target="_blank" rel="noreferrer noopener">10.1007/s11060-018-2781-0</a>
Going Straight to the Source: A Pilot Study of Bereaved Parent-facilitated Communication Training for Pediatric Subspecialty Fellows
Bereavement; Pilot Projects
BACKGROUND: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education, particularly in the provision of "bad news." To our knowledge, no programs currently use bereaved parent educators to facilitate communication training for pediatric subspecialty trainees. PROCEDURE: The authors designed and implemented a pilot communication training seminar in which bereaved parent educators and faculty facilitators led small groups in interactive, role-play scenarios. Surveys incorporating a retrospective preprogram assessment item to account for response-shift bias were used to assess short- and long-term changes in trainee comfort with delivering "bad news." RESULTS: Fifteen pediatric fellowship trainees participated in the communication seminar; complete data were available for 12 participants. After accounting for response-shift bias, participants reported significant improvement in overall preparedness, breaking bad news to a patient and family, and including the adolescent or young adult patient in conversations. Additionally, participants reported a significant improvement in their ability to address a patient and family's need for information, emotional suffering at the end of life (EOL), if and when a patient should be included in the conversation, and EOL care decisions. The participant's self-perceived improvement in comfort and preparedness persisted over time. CONCLUSIONS: Communication training for pediatric subspecialty trainees using bereaved parent educators is feasible and effective. Both medical trainee and bereaved parent participants benefited from involvement in this pilot study. Further iterations of this training will be modified to assess objective measures of improvement in trainees' communication skills.
Snaman JM; Kaye E; Cunningham MJ; Sykes A; Levine DR; Mahoney D; Baker JN
Pediatrics
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/10.1002/pbc.26089" target="_blank" rel="noreferrer noopener">10.1002/pbc.26089</a>
Barriers and facilitators to the implementation of a paediatric palliative care team
health care personnel; palliative therapy; Child; Only Child; Palliative Care; Pilot Projects; human experiment; major clinical study; pilot study; expectation; concrete; child; human; female; male; pediatrics; article; awareness; patient satisfaction; tertiary health care
Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home. Methods: The Measurement Instrument for Determinants of Innovations (MIDI) was used to assess responses of 71 HCPs providing PPC to one or more of the 129 children included in a pilot study of a PPCT based at a university children's hospital. The MIDI (29 items) assessed barriers and facilitators to implementing the PPCT by using a 5-point scale (completely disagree to completely agree) and additional open-ended questions. Items to which >=20% of participants responded with 'totally disagree/disagree' and >=80% responded with 'agree/totally agree' were considered as barriers and facilitators, respectively. A general inductive approach was used for open-ended questions. Results: Reported barriers to implementing a PPCT were related to the HCP's own organisation (e.g., no working arrangements related to use of the intervention [PPCT] registered, other organisational changes such as merger going on). Reported facilitators were mainly related to the intervention (correctness, simplicity, observability and relevancy) and the user scale (positive outcome expectations, patient satisfaction) and only once to the organisation scale (information accessibility). Additionally, HCPs expressed the need for clarity about tasks of the PPCT and reported having made a transition from feeling threatened by the PPCT to satisfaction about the PPCT. Conclusion: Positive experiences with the PPCT are a major facilitator for implementing a PPCT. Tailored organisational strategies such as working arrangements by management, concrete information about the PPCT itself and the type of support provided by the PPCT should be clearly communicated to involved HCPs to increase awareness about benefits of the PPCT and ensure a successful implementation. New PPCTs need protection and resources in their initial year to develop into experienced and qualified PPCTs.
Verberne LM; Kars MC; Schepers SA; Schouten-Van Meeteren AYN; Grootenhuis MA; Van Delden JJM
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/s12904-018-0274-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0274-8</a>
Bringing social context into the conversation about pediatric long-term ventilation
artificial ventilation; Ventilators; long term care; Child; Home Care Services; Long-Term Care; Only Child; Patient-Centered Care; home care; hospital patient; life sustaining treatment; personal experience; quality of life; tracheostomy; child; human; pediatrics; article; decision support system; family decision making; social environment; home environment; medical information; practice gap; Mechanical
Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child's life, the added months to years could largely be spent in the hospital, a long-term care facility, or medical foster care, as well as at home. Clinicians who counsel families about initiating LTV must help them make value-based decisions that account for each child's medical needs and the predicted experience with the technology. That experience depends substantially on how well the family can manage daily care at home: How well they can learn the necessary skills, dedicate the required time, and garner adequate support. Because the success of long-term technologies rests on home care provided by families, each family's social context is relevant to the decision to initiate pediatric LTV. Social context (the physical, geographic, economic, and cultural circumstances in which children and their families live) will impact the child's outcome; those children with medical complexity combined with adverse social factors have the poorest health among all children.1 A recent study showed that ~2% of PICU patients across the United States received a tracheostomy and LTV; almost all of these children had chronic medical conditions.2 Substantial variability was noted in the postdischarge support systems provided to these medically complex patients and their families. Regional resources, such as home nursing, medical day care, and medical transportation, can reduce burdens for this population, but they receive inconsistent local, state, and federal support. Considerable caregiving demands for families managing home medical equipment are well described and can entail employment changes, geographic relocation, or disruption of family structure.3 Clinicians striving to individualize decisions about LTV generally have a limited window into the social context that shapes what it will be like for this child to go home with this family. Similarly, families faced with decisions about LTV for their children may not know how to think through the implications for changes to life at home. Evidence for how to consistently, meaningfully, and fairly incorporate family social contexts into decisions about LTV has not kept pace with the availability of pediatric home medical equipment. The essential question is can this family provide the necessary home care if LTV is initiated for the child? And, if not, what would the alternatives look like, and are they acceptable to the family? These decisions require frank consideration of the child's and the family's potential experience of the treatment alternatives: Complex home care, indefinite inpatient care, medical foster care, or limiting life-sustaining therapies. Reviewing potential home care demands and alternative placements during decisions about initiating LTV may not be helpful for every family, but consistently offering tangible discussions of child and family quality of life with LTV legitimizes and explores these concerns for any.
Henderson CM; Wilfond BS; Boss RD
Hospital Pediatrics
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/10.1542/hpeds.2016-0168" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2016-0168</a>
Proxy-Reported Quality of Life and Family Impact for Children Followed Longitudinally by a Pediatric Palliative Care Team
Quality of Life; palliative therapy; Child; Longitudinal Studies; Only Child; Palliative Care; major clinical study; statistical significance; longitudinal study; prospective study; child; attention; human; female; male; quality of life; article; diagnosis; analysis of variance; daily life activity; Metronidazole; minimal clinically important difference; physical model
Background: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance. Objective: The purpose of this study was to longitudinally evaluate the effect of time on quality of life and family impact for pediatric palliative care patients across all diagnoses and ages. Design: This prospective quality-of-life study included administration of a 23-item PedsQLTM Measurement Model to evaluate for physical, emotional, social, and cognitive dimensions of the child's quality of life and a 36-item PedsQL Family Impact Module to assess for the familial impact at time of initial palliative care consultation, Month 6, and Month 12. Setting/Subjects: All pediatric patients who received a palliative care consultation in our Midwestern free-standing children's hospital over a five-year period were included in the longitudinal study (n = 87). Measurements: Repeated measures ANOVA was used to investigate how proxy-reported quality of life and family impact changed with time with attentiveness to also follow trends in minimal clinically important difference (MCID) metrics. Results: The emotional domain showed a statistically significant positive trend over the first six months of palliative care involvement (p = 0.049), while the physical domain (p = 0.028) and daily activity (p = 0.039) showed a positive improvement for the full year. In using a standard of MCID, the physical, emotional, and cognitive domains improved in the quality-of-life scale and the communication, worry, and daily activity domains improved in the family impact scale over 12 months. Conclusions: In considering quality-of-life analyses for pediatric palliative care programmatic improvements, providers may consider analyzing not only for statistical significance in collective data sets but also for clinically important difference over time.
Weaver M; Wichman C; Darnall C; Bace S; Vail C; Macfadyen A
Journal of Palliative 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).
<a href="http://doi.org/10.1089/jpm.2017.0092" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0092</a>
Parenting in Childhood Life-Threatening Illness: A Mixed-Methods Study
child parent relation; palliative therapy; Child; Decision Making; Only Child; decision making; human experiment; sibling; child; human; female; male; article; controlled study; perception; childhood; interview; problem solving; social work
Background: Parenting children with life-threatening illness (LTI) and their healthy siblings requires parents to consider their various needs. Objective and Methods: We conducted a concurrent, cross-sectional mixed-methods study to describe challenges parents face prioritizing tasks and goals for each child with qualitative data, compare parents' tasks and goals for children with LTI and healthy siblings with quantitative data, and describe parenting in terms of the process of prioritizing tasks and goals for all children in the family. Results: Participants included 31 parents of children with LTI who have healthy siblings and were admitted to a children's hospital. Qualitative interviews revealed how parents managed children's needs and their perceptions of the toll it takes. Quantitative data revealed that parents prioritized "making sure my child feels loved" highest for ill and healthy children. Other goals for healthy siblings focused on maintaining emotional connection and regularity within the family and for ill children focused on illness management. Mixed-methods analysis revealed that parents engaged in a process decision making and traded-off competing demands by considering needs which ultimately transformed the meaning of parenting. Discussion: Future research can further examine trade-offs and associated effects, how to support parent problem-solving and decision-making around trade-offs, and how to best offer social services alongside illness-directed care.
Mooney-Doyle K; Deatrick JA; Ulrich CM; Meghani SH; Feudtner C
Journal of Palliative 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).
<a href="http://doi.org/10.1089/jpm.2017.0054" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0054</a>
Survey on Neonatal End-of-Life Comfort Care Guidelines Across America
anxiety; compassion fatigue; pediatrics; intensive care; comfort; palliative therapy; Canada; Infant; Newborn; Palliative Care; bodily secretions; newborn; satisfaction; institutional review; neonatologist; practice guideline; human; terminal care; article; pain; gastrointestinal symptom; geographic distribution; neonatal nurse practitioner; perinatal care
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). Objectives: The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America. Methods: After institutional review board approval (516005), an anonymous, electronic survey was sent to members of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine. Members of the listserv include neonatologists, neonatal fellow physicians, neonatal nurses, and neonatal nurse practitioners from across America (U.S. and Canada). Results: There were 346/3000 (11.5%) responses with wide geographic distribution and high levels of intensive care responding (46.1% Level IV, 50.9% Level III, 3.0% Level II). Nearly half (45.2%) reported that their primary institution did not have neonatal comfort care guidelines. Of those reporting institutional neonatal comfort care guidelines, 19.1% do not address pain symptom management. Most guidelines also do not address gastrointestinal distress, anxiety, or secretions. Thirty-nine percent of respondents stated that their institution did not address physician compassion fatigue. Overall, 91.8% of respondents felt that their institution would benefit from further education/training in neonatal EOL care. Conclusion: Across America, respondents confirmed significant variation and verified many institutions do not formally address neonatal EOL comfort care. Institutions with guidelines commonly appear to lack crucial areas of palliative care including patient symptom management and provider compassion fatigue. The overwhelming majority of respondents felt that their institutions would benefit from further neonatal EOL care training.
Haug S; Farooqi S; Wilson CG; Hopper A; Oei G; Carter B
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.10.023" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.10.023</a>
Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
life expectancy; Infant; Newborn; health survey; newborn; health care quality; self report; parental attitude; prospective study; parental behavior; newborn care; child parent relation; health program; human; female; male; adult; article; clinical article; life limiting disease; patient comfort; physical disease; fluid intake; health care delivery; infant nutrition; kangaroo care; peer review; standardization
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35 families) who elected comfort care for their newborns diagnosed with life-limiting conditions. Standardized comfort measures including family/infant bonding, warmth, nutrition/hydration and pain/discomfort management were provided to all infants. Parents consented to receive a questionnaire with quantitative response options and open-ended questions.Results:Forty-two questionnaires (26 from mothers and 16 from fathers) were collected and analyzed. Most parents reported that their child was treated with respect, in a caring, peaceful and non-invasive environment. To the question 'Do you think that overall your baby received comfort' mode response was 'always'.Conclusion:Parents of infants with life-limiting conditions perceive that their babies experience comfort as a result of the care provided by the standardized Neonatal Comfort Care Program.
Parravicini E; Daho M; Foe G; Steinwurtzel R; Byrne M
Journal of Perinatology
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/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.160</a>
Involvement of nurses in end-of-life discussions for severely disabled children
intellectual impairment; nurse; qualitative research; Child; Disabled Children; Only Child; human experiment; quality of life; retrospective study; distress syndrome; morality; semi structured interview; child; human; female; male; article; clinical article; handicapped child
Background: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions is largely unknown. The objective of this research was to investigate the involvement in the hospital of nurses in discussions with parents and physicians about EoLDs for children with PIMD. Method: In a retrospective, qualitative study, we conducted semi-structured interviews with the nurses of 12 children with PIMD for whom an EoLD was made within the past 2 years. Results: Parents primarily discuss EoLDs with nurses before and after the meeting with the physician. Nurses who were involved in EoL discussions with parents and physicians assisted them by giving factual information about the child and by providing emotional support. Some nurses, especially nurses from ID-care services, were not involved in EoL discussions, even if they had cared for the child for a long period of time. Some of the nurses had moral or religious objections to carrying out the decisions. Conclusion: Most nurses were not involved in EoL discussions with parents and physicians in the hospital. Excluding nurses from EoL discussions can cause them moral distress. The involvement of nurses in EoL discussions for children with PIMD should be improved, especially by involving nurses from ID-care services. Because these nurses are usually familiar with the child, they can be valuable sources of information about the child's quality of life.
Zaal-Schuller IH; Willems DI; Ewals F; van Goudoever JB; de Vos MA
Journal of Intellectual Disability Research.
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/jir.12473" target="_blank" rel="noreferrer noopener">10.1111/jir.12473</a>