End-of- Life Decision-making For Newborns: A 12-year Experience In Hong Kong. Archives Of Disease In Childhood Fetal & Neonatal Edition
Cause Of Death; Decision Making; Female; Hong Kong; Humans; Infant; Infant Mortality/trends; Infant Newborn; Male; Retrospective Studies; Terminal Care/trends; Withholding Treatment/trends
Ethics; Palliative Care
SETTING
Neonatal end-of-life decisions could be influenced by cultural and ethnic backgrounds. These practices have been well described in the West but have not been systematically studied in an Asian population.
OBJECTIVES
To determine: (1) different modes of neonatal death and changes over the past 12 years and (2) factors influencing end-of-life decision-making in Hong Kong.
DESIGN
A retrospective study was conducted to review all death cases from 2002 to 2013 in the busiest neonatal unit in Hong Kong. Modes of death, demographical data, diagnoses, counselling and circumstances around the time of death, were collected and compared between groups.
RESULTS
Of the 166 deaths, 46% occurred despite active resuscitation (group 1); 35% resulted from treatment withdrawal (group 2) and 19% occurred from withholding treatment (group 3). A rising trend towards treatment withdrawal was observed, from 20% to 47% over the 12-year period. Similar number of parents chose extubation (n=44, 27%) compared with other modalities of treatment limitation (n=45, 27%). Significantly more parents chose to withdraw rather than to withhold treatment if clinical conditions were 'stable' (p=0.03), whereas more parents chose withholding therapy if treatment was considered futile (p=0.03).
CONCLUSION
In Hong Kong, a larger proportion of neonatal deaths occurred despite active resuscitation compared with Western data. Treatment withdrawal is, however, becoming increasingly more common. Unlike Western practice, similar percentages of parents chose other modalities of treatment limitation compared with direct extubation. Cultural variance could be a reason for the different end-of-life practice adopted in Hong Kong.
Chan LC; Cheung HM; Poon TC; Ma TP; Lam HS; Ng PC
Archives Of Disease In Childhood
2016
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).
DOI: 10.1136/archdischild-2015-308659
Exploring The Spiritual Needs Of Families With Seriously Ill Children
Adolescent; Child; Cultural Characteristics; Family/psychology; Female; Humans; Male; Needs Assessment; Nursing Assessment; Palliative Care; Professional-family Relations; Qualitative Research; Spirituality
Nursing; Spirituality; Pediatrics; Palliative Care; Qualitative
Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for nurses in paediatrics and help nurses develop skills for communicating about spirituality, this research examined the spiritual needs of families based on nurses' experiences with families of seriously ill children. Nurses' experiences revealed that families' anger with God, blame/regret, forgiveness, and ritual and cultural traditions are salient spiritual needs requiring effective nurse communication skills to support families of ill children.
Ferrell B
International Journal Of Palliative Nursing
2016
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http://dx.doi.org/10.12968/ijpn.2016.22.8.388
Predictors Of Intention To Refer To Pediatric Palliative Or Hospice Care
Adult; Age Factors; Attitude Of Health Personnel; Attitude To Death; Continental Population Groups; Female; Hospice Care/psychology; Hospitals Pediatric/statistics & Numerical Data; Humans; Intensive Care Units Neonatal/statistics & Numerical Data; Intention; Male; Middle Aged; Nurses Pediatric/psychology; Palliative Care/psychology; Referral And Consultation/statistics & Numerical Data; Regression Analysis; Sex Factors
Andersen; Behavioral Model; Health Service Use; Hospice; Nurse; Palliative Care; Pediatrics; Referral
The purpose of this descriptive correlational study was to determine whether nurse characteristics, level of comfort with care of the dying, and spirituality predict intention to refer and timing of referral to pediatric palliative/hospice care. The Behavioral Model of Health Services Use served as the framework for this study. Data were collected from 105 pediatric nurses recruited from 7 patient units of one pediatric hospital. Regression analysis revealed several nurse factors (practice unit, years of experience, age, race/ethnicity) that predicted intent to refer and timing of referral to pediatric palliative/hospice care. The relationship between nurse characteristics and intent to refer was specific to certain medical conditions (HIV, extreme prematurity, brain injuries). Healthcare providers can use these findings to improve care for children with life-limiting illnesses.
N E Conner; N Uddin
American Journal Of Hospice And Palliative Medicine
2016
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).
DOI: 10.1177/1049909115593062
A Survey Of Key Opinion Leaders On Ethical Resuscitation Practices In 31 European Countries.
Adult; Cardioulmonary Resuscitation/ethics; Child; Child Preschool; Ethics Medical; Europe; Female; Heart Arrest/therapy; Humans; Leadership; Linear Models; Male; Surveys And Questionnaires; Terminal Care/ethics
Bioethics; Cardiac Arrest; Emergency Care; End-of-life Care; Resuscitation
BACKGROUND:
Europe is a patchwork of 47 countries with legal, cultural, religious, and economic differences. A prior study suggested variation in ethical resuscitation/end-of-life practices across Europe. This study aimed to determine whether this variation has evolved, and whether the application of ethical practices is associated with emergency care organisation.
METHODS:
A questionnaire covering four domains of resuscitation ethics was developed based on consensus: (A) Approaches to end-of-life care and family presence during cardiopulmonary resuscitation; (B) Determinants of access to best resuscitation and post-resuscitation care; (C) Diagnosis of death and organ donation (D) Emergency care organisation. The questionnaire was sent to representatives of 32 countries. Responses to 4-choice or 2-choice questions pertained to local legislation and common practice. Positive responses were graded by 1 and negative responses by 0; grades were reconfirmed/corrected by respondents from 31/32 countries (97%). For each resuscitation/end-of-life practice a subcomponent score was calculated by grades' summation. Subcomponent scores' summation resulted in domain total scores.
RESULTS:
Data from 31 countries were analysed. Domains A, B, and D total scores exhibited substantial variation (respective total score ranges, 1-41, 0-19 and 9-32), suggesting variable interpretation and application of bioethical principles, and particularly of autonomy. Linear regression revealed a significant association between domain A and D total scores (adjusted r(2)=0.42, P<0.001).
CONCLUSIONS:
According to key experts, ethical practices and emergency care still vary across Europe. There is need for harmonised legislation, and improved, education-based interpretation/application of bioethical principles. Better application of ethical practices may be associated with improved emergency care organisation.
Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.
Mentzelopoulos SD; Bossaert L; Raffay V; Askitopoulou H; Perkins GD; Greif R; Haywood K; Van de Voorde P; Xanthos T
Resuscitation
2016
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).
DOI: <a href="https://doi.org/10.1016/j.resuscitation.2015.12.010" target="_blank" rel="noreferrer">10.1016/j.resuscitation.2015.12.010</a>
Family Conferences In The Neonatal Icu: Observation Of Communication Dynamics And Contributions.
Communication; Critical Illness/psychology; Decision Making; Empathy; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Male; Parents/psychology; Professional-family Relations; Qualitative Research; Terminal Care/psychology
Abstract
OBJECTIVES:
Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train clinicians in key communication skills. We devised a pilot study to record and analyze how interdisciplinary neonatal ICU clinicians and parents navigate difficult conversations during neonatal ICU family conferences.
DESIGN:
We prospectively identified and audiotaped a convenience sample of neonatal ICU family conferences about "difficult news." Conversations were analyzed using the Roter interaction analysis system, a quantitative tool for assessing content and quality of patient-provider communication.
SETTING:
An urban academic children's medical center with a 45-bed level IV neonatal ICU.
SUBJECTS:
Neonatal ICU parents and clinicians.
INTERVENTIONS:
None.
MEASUREMENTS AND MAIN RESULTS:
We analyzed 19 family conferences that included 31 family members and 23 clinicians. The child's mother was included in all conferences, and a second parent, usually the father, was present in 13 conferences. All but one conference included multiple medical team members. On average, physicians contributed 65% of all dialogue, regardless of who else was present. Over half (56%) of this dialogue involved giving medical information; under 5% of clinician dialogue involved asking questions of the family, and families rarely (5% of dialogue) asked questions. Conversations were longer with the presence of nonphysician clinicians, but this did not increase the amount of dialogue about psychosocial information or increase parent dialogue.
CONCLUSIONS:
We collected a novel repository of audio-recorded neonatal ICU family meetings that offers insights into discussion content and process. These meetings were heavily focused on biomedical information even when interdisciplinary clinicians were present. Clinicians always talked more than parents, and no one asked many questions. Maximizing the participation of interdisciplinary clinicians in neonatal ICU family meetings may require explicit strategies. Methods to increase family engagement should be targeted.
Boss RD; Donohue PK; Larson SM; Arnold RM; Roter DL
Pediatric Critical Care Medicine
2016
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DOI: 10.1097/PCC.0000000000000617
Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment
Adolescent; Child; Child Preschool; Disabled Children/psychology; Family; Female; Hospice; Humans; Infant; Internet; Longitudinal Studies; Male; Palliative Care; Parents/psychology; Power (psychology); Quality Of Life/psychology; Social Support; Surveys And Questionnaires; United Kingdom; Young Adult
Child; Hospice; Outcome; Parents; Quality Of Life
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient-professional communications and also to enhance patient empowerment within healthcare dialogues.
DESIGN:
A longitudinal, multisite mixed-method evaluation of MyQuality. Families were invited to use MyQuality and completed semi-structured interviews and a Family Empowerment Scale (FES) at T=0 and T+3 months.
PATIENTS AND SETTING:
Thirty-two families of children with LLIs, attending three children's hospices in one UK region.
OUTCOME MEASURES:
Website access, usage patterns and parameter choice, FES scores and qualitative evaluation of interviews.
RESULTS:
23/32 families chose to use the website. Mean duration of use was 106 days (range 2-301), with families choosing two or three parameters (range 1-15), most commonly seizures (24/32), constipation (9/32), pain (6/32) and sleep problems (6/32). Mean FES scores increased over time (3.45-3.85). Interview feedback confirmed the acceptability and ease of use of the website, and the value of a graphic record of change over time to support ongoing management and collaborative review of medical, nursing or social interventions.
CONCLUSIONS:
The identification and monitoring of patient-generated priorities via the MyQuality website empowers families and supports collaboration between parents and professionals to ensure that palliative care is truly patient and family centred.
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Harris N; Beringer A; Fletcher M
Archives Of Disease In Childhood
2016
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doi: 10.1136/archdischild-2015-308769
The Experiences Of Families Living With The Anticipatory Loss Of A School-age Child With Spinal Muscular Atrophy – The Parents’ Perspectives
Adult; Child; Female; Grief; Humans; Interviews As Topic; Male; Middle Aged; Muscular Atrophy Spinal/nursing; Muscular Atrophy Spinal/psychology; Nurse's Role; Parents/psychology; Taiwan
Anticipatory Loss; School-age Children; Spinal Muscular Atrophy
Aims and objectives
To probe into parents’ anticipatory loss of school-age children with Type I or II spinal muscular atrophy.
Background
Spinal muscular atrophy is a rare disorder that causes death. Children die early due to either gradual atrophy or an infection of the lungs. Therefore, family members experience anticipatory loss, which causes grief before the actual loss. Family members feel physically and mentally exhausted, which results in a family crisis. Therefore, it is important to explore their experiences related to anticipatory loss to assist with the adjustment of the families to their circumstances.
Design
This study applied a phenomenology method and purposive sampling.
Participants
The 19 parents who participated in this study were referred to us by two medical centers in Taiwan. Their average age was 32–49 years.
Methods
Using in-depth interviews, this study explored parents’ anticipatory loss. The interviews were recorded and transcribed. Meanings were extracted using Giorgi analysis, and precision was assessed according to Guba and Lincoln, which was treated as the evaluation standard.
Results
Four themes were identified from the parents’ interviews. The themes included enduring the helplessness and pressure of care, suffering due to the child's rare and unknown condition, loss of hope and a reinforcement of the parent–child attachment, and avoiding the pressure of death and enriching the child's life.
Conclusions
The research findings help nurses identify anticipatory loss among parents of school-age children with type I or II spinal muscular atrophy. They enhance health professionals’ understanding of the panic that occurs in the society surrounding the families, family members’ dynamic relationships, and the families’ demands for care.
Relevance to clinical practice
In an attempt to providing intersubjective empathy and support with family having a child with type I and II SMA, nurses may recognize relevant family reactions and enhancing their hope and parent-child attachment. Encourage family members and child go beyond the pressure of death and create customized care plans meeting families’ emotional and medical needs.
Yang
Journal Of Clinical Nursing
2016
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DOI: 10.1111/jocn.13312
Factors Influencing The Uptake Of Neonatal Bereavement Support Services – Findings From Two Tertiary Neonatal Centres In The Uk
Autopsy; Bereavement; England; Female; Humans; Infant; Infant Death; Infant Newborn; Intensive Care Units Neonatal; Male; Parents/psychology; Patient Acceptance Of Health Care/statistics & Numerical Data; Perinatal Care/utilization; Referral And Consultation/utilization; Social Support; Socioeconomic Factors; Stillbirth/psychology
Neonatal; Bereavement Follow Up; Death; Ethnicity; Socio-economic; Autopsy
Background
Research on perinatal bereavement services is limited. The aim of the study was to compare the uptake of bereavement support services between two tertiary neonatal units (NNU), and to investigate influencing factors.
Method
The medical and bereavement records of all neonatal deaths were studied from January 2006 to December 2011. Data collected included parent and baby characteristics, mode of death, consent for autopsy and bereavement follow-up. The categorical data were compared by chi-square or Fisher’s exact test and continuous data by Wilcoxon signed-rank test; a multivariable regression analysis was performed using STATA 12.0.
Results
The neonatal deaths of 297 babies (182 in NNU1 and 115 in NNU2) with full datasets were analysed. Baby characteristics were similar between units except for lower median gestational age in NNU1 (p = 0.03). Significantly more NNU1 parents were non-Caucasian (p < 0.01), from lower socio-economic status (p = 0.01) and had previous stillbirth/miscarriage (p = 0.03). More babies had care withdrawn in NNU2 (p < 0.01). A significantly higher proportion of parents from NNU1 (61 %) attended bereavement follow-up compared to NNU2 (34 %; p < 0.01).
On multivariable analysis, significantly more parents who were married or co-habiting (p = 0.02) and consented for an autopsy (p = 0.01) attended bereavement services.
Conclusion
Uptake of bereavement services varied between the two NNUs, which could be due to differences in the ethnic and socio-economic mix of the population. Significantly more parents who were married or co-habiting, or consented for autopsy, attended bereavement follow up services.
Jayanta Banerjee; Charanjit Kaur; Sridhar Ramaiah; Rahul Roy; Narendra Aladangady
Bmc Palliative Care
2016
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doi: 10.1186/s12904-016-0126-3
Helping Families Cope With The Severe Stress Of Dravet Syndrome.
Epilepsies; Myoclonic/nursing; Epilepsies Myoclonic/physiopathology; Epilepsies Myoclonic/psychology; Family; Family Health; Female; Humans; Male; Stress Psychological/etiology; Transition To Adult Care
Dravet Syndrome; Family; Help; Management; Support
Abstract
A child with Dravet syndrome shakes family life to the core. Dravet syndrome usually has three phases: (1) up to 1-1½ years: with episodes of febrile status epilepticus but normal development; (2) age 1½ to ~6-10 years: with frequent seizures of varying types, developmental stagnation, behavioural and sleep problems; (3) after ~10 years: improvement in seizures, deteriorating gait, intellectual disability but some developmental gains. Complete seizure control is rare-simply prescribing medication is inadequate to help families. Based on structured interviews with 24 families and confirmed by more informal discussions with other families, we suggest strategies for coping with this catastrophe. A child with Dravet syndrome usually means that one parent cannot work-financial pressures should be anticipated. In Stage 1, the approach to status should include a written protocol. An indwelling catheter for rapid venous access may be helpful. In Stage 2, assistance finding qualified babysitters is required, and the extended family needs encouragement to help. Appropriate equipment, rescue medication and protocols should travel with the child. Siblings may benefit from a system of one parent "on call." An internet support group provides an invaluable lifeline. In Stage 3, family isolation may be extreme-respite care and personal time for parents are important. Death from status, accidents and SUDEP (sudden unexplained death in epilepsy) occurs in 15%. Fear of SUDEP needs to be addressed. Moving from paediatric to adult care is frightening; an epilepsy transition clinic is useful. Attention to these realities may improve the quality of life for both child and family.
Camfield P; Camfield C; Nolan K
Canadian Journal Of Neurological Sciences
2016
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DOI: 10.1017/cjn.2016.248
“have No Regrets:” Parents’ Experiences And Developmental Tasks In Pregnancy With A Lethal Fetal Diagnosis.
Adult; Choice Behavior; Emotions; Female; Fetal Diseases/diagnosis; Fetal Diseases/mortality; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Needs Assessment; Palliative Care; Parents/psychology; Perinatal Care; Pregnancy; Prenatal Diagnosis/psychology; Qualitative Research; Young Adult
Developmental Task; Lethal Fetal Diagnosis; Longitudinal; Perinatal Palliative Care; Phenomenology; Pregnancy; Prenatal Diagnosis; Usa
SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered.
METHODS:
This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews (N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2-3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results.
RESULTS:
Despite individual differences, parents were quite consistent in sharing that their overall goal was to "Have no regrets" when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks.
CONCLUSION:
The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction.
Cote-Arsenault D; Denney-Koelsch E
Social Science & Medicine
2016
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DOI: 10.1016/j.socscimed.2016.02.033
An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions
Acute Pain/therapy; Adolescent; Adult; Advance Directives; Aged; Attitude Of Health Personnel; Canada; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Medical Staff Hospital/psychology; Middle Aged; Nursing Staff Hospital/psychology; Palliative Care/standards; Pediatric Nursing/standards; Practice Guidelines As Topic; Respiratory Distress Syndrome Adult/therapy; Surveys And Questionnaires; Young Adult
BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family, the OPD is prescribed by the attending physician whenever judged appropriate. The OPD can then be initiated by the bedside nurse when necessary; the physician is notified after the first dose is administered.
OBJECTIVES:
The study objectives were to evaluate the perceptions and experience of the medical/nursing staff towards the use of the OPD.
METHODS:
A survey was distributed to all physicians/nurses working on wards with pediatric palliative care patients. Answers to the survey were anonymous, done on a voluntary basis, and after consent of the participant.
RESULTS:
Surveys (258/548) were answered corresponding to a response rate of 47%. According to the respondents, the most important motivations in using the OPD were the desire to relieve patient's distress and the speed of relief of distress by the OPD; the most important obstacles were going against the patient's/his or her family's wishes and fear of hastening death. The respondents reported that the OPD was frequently (56%) or always (36%) effective in relieving the patient's distress. The respondents felt sometimes (16%), frequently (34%), or always (41%) comfortable in giving the OPD. They thought the OPD could never (12%), rarely (32%), sometimes (46%), frequently (8%), or always (1%) hasten death. Physicians were less favorable than nurses with the autonomy of bedside nurses to initiate the OPD before notifying the physician (p = 0.04). Overall, 95% of respondents considered that they would use the OPD in the future.
CONCLUSIONS:
Data from this survey shows that respondents are in favor of using the OPD at SJH and find it effective. Further training as well as support for health care professionals are mandatory in such palliative care settings.
Bidet G; Daoust L; Duval M; Ducruet T; Toledano B; Humbert N
Journal Of Palliative Medicine
2016
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).
DOI: 10.1089/jpm.2015.0100
Development And Evaluation Of A Palliative Care Curriculum For Cystic Fibrosis Healthcare Providers.
Attitude Of Health Personnel; Curriculum; Cystic Fibrosis/psychology; Cystic Fibrosis/therapy; Disease Management; Female; Health Personnel/education; Health Personnel/psychology; Humans; Male; Middle Aged; Needs Assessment; Palliative Care/methods; Palliative Care/psychology; Quality Of Life; Surveys And Questionnaires; Terminal Care/methods; Terminal Care/psychology; United States
Cystic Fibrosis; Education; End-of-life Care; Palliative Care
BACKGROUND:
Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for cystic fibrosis (CF) patients. The objective of this study was to assess change in comfort with core skills among care team members after participation in CF-specific palliative care training focused on management of burdensome symptoms and difficult conversations.
METHODS:
A qualitative needs assessment was performed to inform the development of an 18-hour curriculum tailored to the chronicity and complexity of CF care. A 32-question pre- and post-course survey assessed CF provider comfort with the targeted palliative care skills in 5 domains using a 5-point Likert scale (1=very uncomfortable, 3=neutral, 5=very comfortable).
RESULTS:
Among course participants (n=16), mean overall comfort score increased by 0.9, from 3 (neutral) to 3.9 (comfortable) (p<0.001). Mean comfort level increased significantly (range 0.8 to 1.4) in each skill domain: use of supportive care resources, pain management, non-pain symptom management, communication, and psychosocial skills.
CONCLUSIONS:
CF-specific palliative care training was well received by participants and significantly improved self-assessed comfort with core skills.
Linnemann RW; O’Malley PJ; Friedman D; Georgiopoulos AM; Buxton D; Altstein
LL
Journal Of Cystic Fibrosis
2016
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DOI: 10.1016/j.jcf.2015.03.005
Dying At Lifes Beginning: Experiences Of Parents And Health Professionals In Switzerland When An ’in Utero' Diagnosis Incompatible With Life Is Made.
Attitude Of Health Personnel; Decision Making; Female; Fetus/abnormalities; Genetic Counseling/psychology; Humans; Interviews As Topic; Male; Midwifery; Parents/psychology; Pregnancy; Prenatal-diagnosis; Surveys And Questionnaires; Switzerland
Fetal Congenital Malformation; Gaps; Temporality; Thematic Analysis
OBJECTIVE:
The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of it comes from the United States and little has been generated from Europe. This study aims to illuminate the contemporary treatment associated with such diagnoses, regardless of whether parents decide to terminate or continue the pregnancy.
DESIGN:
a qualitative design was used with data collected by semi-structured interviews and subjected to a thematic analysis.
SETTING:
the research was conducted in the German speaking areas of Switzerland with data collected from participants in places of their choice.
PARTICIPANTS:
61 interviews were conducted with 32 parents and 29 health professionals.
FINDINGS:
the theme of 'temporality' identified four main time points from the professionals: diagnosis, decision, birth/death, and afterwards. However, in contrast to these, six major themes in this study, primarily generated from parents and extended from receiving the diagnosis until the interview, were identified: shock, choices and dilemmas, taking responsibility, still being pregnant, forming a relationship with the baby, letting go. Although there was concurrence on many aspects of care at the point of contact, parents expressed major issues as gaps between the points of contact.
CONCLUSIONS:
care varied regionally but was as sensitive as possible, attempting to give parents the space to accept their loss but fulfil legal requirements. A gap exists between diagnosis and decision with parents feeling pressured to make decisions regarding continuing or terminating their pregnancies although health professionals' testimonies indicated otherwise. A major gap manifested following the decision with no palliative care packages offered. During the birth/death of the baby, care was sensitive but another gap manifested following discharge from hospital.
Fleming V; Iljuschin I; Pehlke-Milde J; Maurer F; Parpan F
Midwifery
2016
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DOI: 10.1016/j.midw.2016.01.014
Extremely Premature Birth And The Choice Of Neonatal Intensive Care Versus Palliative Comfort Care: An 18-year Single- Center Experience.
Adult; Counseling; Decision Making; Female; Gestational Age; Humans; Infant Extremely Premature; Infant Newborn; Intensive Care Units Neonatal/organization & Administration; Oregon; Palliative Care/organization & Administration; Perinatal Care/ethics; Perinatal Care/methods; Pregnancy; Premature Birth/nursing; Resuscitation; Retrospective Studies; Young Adult
OBJECTIVE:
Review all live births 22 0/7 through 26 6/7 weeks gestation born 1996 through 2013 at our institution to describe the decision process and immediate outcomes of palliative comfort care (PCC) versus neonatal intensive care (NICU) and whether any significant family complaints or quality assurance concerns arose.
STUDY DESIGN:
Retrospective chart review, physician and ethicist interview process and database review focused upon our established periviability counseling guidelines that are directive of PCC at 22 weeks gestation and NICU at 26 weeks but supportive of informed family choice of either option at 23, 24 and 25 weeks.
RESULT:
At 22 weeks--all 54 infants had PCC; at 23 weeks--29/78 (37%) chose NICU care, 6/29 (21%) infants survived; at 24 weeks--79/108 (73%) chose NICU care, 47/79 (59%) survived; at 25 weeks--147/153 (96%) chose NICU care, 115/147 (78%) survived; and at 26 weeks--all infants had NICU care, 176/203 (87%) survived. Over 18 years and 606 births, we identified only three significant concerns from families and/or physicians that required formal review.
CONCLUSION:
Most pregnant women and families choose NICU care for their extremely premature infant, but if given the option via shared decision making, a significant proportion will choose PCC at gestational ages that some NICUs mandate resuscitation. We support a reasoned dialogue and bioethical framework that recognizes human values to be irreducibly diverse, sometimes conflicting, and ultimately incommensurable--value pluralism. Respectful shared decision making requires thoughtful and compassionate flexibility, nuanced and individualized suggestions for PCC or NICU and the reduction of hierarchical directives from physicians to families. We continue to advocate and rely upon informed family preference between 23 and 25 weeks gestation in our updated 2015 periviability guidelines.
Kaempf JW; Tomlinson MW; Tuohey J
Journal Of Perinatology : Official Journal Of The California Perinatal Association
2016
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DOI: 10.1038/jp.2015.171
Impact Of A Palliative Care Program On End-of- Life Care In A Neonatal Intensive Care Unit.
Benzodiazepines/therapeutic Use; Cause Of Death; Female; Humans; Infant; Infant Death; Infant Newborn; Intensive Care Units Neonatal/organization & Administration; Male; Morphine/therapeutic Use; Palliative Care; Resuscitation Orders; Retrospective Studies; Terminal Care; Withholding Treatment/trends
OBJECTIVE:
Evaluate changes in end-of-life care following initiation of a palliative care program in a neonatal intensive care unit.
STUDY DESIGN:
Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program comprised of medication guidelines, an individualized order set, a nursing care plan and staff education.
RESULT:
Eighty-two infants died before (Era 1) and 68 infants died after implementation of the program (Era 2). Morphine use was similar (88% vs 81%; P =0.17), whereas benzodiazepines use increased in Era 2 (26% vs 43%; P=0.03). Withdrawal of life support (73% vs 63%; P=0.17) and do-not-resuscitate orders (46% vs 53%; P=0.42) were similar. Do-not-resuscitate orders and family meetings were more frequent among Era 2 infants with activated palliative care orders (n=21) compared with infants without activated orders (n=47).
CONCLUSION:
End-of-life family meetings and benzodiazepine use increased following implementation of our program, likely reflecting adherence to guidelines and improved communication.
Younge N; Smith PB; Goldberg RN; Brandon D; Simmons C; Cotten CM
Journal Of Perinatology : Official Journal Of The California Perinatal Association
2016
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).
DOI: 10.1038/jp.2014.193
Palliative Care Research - A Systematic Review Of Foci, Designs And Methods Of Research Conducted In Sweden Between 2007 And 2012.
Adolescent; Adult; Aged; Aged 80 And Over; Child; Female; History 21st Century; Humans; Male; Middle Aged; Palliative Care; Research Design; Sweden; Young Adult
Sweden; End-of-life Care; Palliative Care; Research Designs; Research Methods; Review
BACKGROUND:
In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.
METHODS:
A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.
RESULTS:
A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.
CONCLUSIONS:
The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.
Henoch I; Carlander I; Holm M; James I; Kenne Sarenmalm E; Lundh Hagelin C
Scandinavian Journal Of Caring Sciences
2016
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).
DOI: 10.1111/scs.12253
Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.
Bereavement; Critical Care/organization & Administration; Cross-sectional Studies; Female; Fetal Mortality; Humans; Infant Newborn; Palliative Care/organization & Administration; Parents/psychology; Perinatal Care/organization & Administration; Pregnancy; Professional-family Relations; Surveys And Questionnaires; United States
BACKGROUND:
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis.
OBJECTIVE:
To examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs.
DESIGN:
A cross-sectional survey design included 48 items addressing funding and domains of quality care.
SUBJECTS:
Program representatives from 30 states (n = 75).
PRINCIPAL RESULTS:
Perinatal palliative care programs are housed in academic medical centers, regional or community hospitals, local hospices, or community-based organizations. Significant differences by program setting were observed for type of fetal diagnoses seen, formal training in communicating bad news to parents, mechanisms to ensure continuity of care, and reimbursement mechanisms. One hundred percent of programs provided attention to spiritual needs and bereavement services; 70% of programs are less than 10 years old. Follow-up with parents to assess whether goals were met occurs at 43% of the perinatal palliative care programs. Formal measures of quality assessment were articulated in 38% of programs.
CONCLUSION:
This study dramatically adds to the literature available on perinatal palliative care program settings, types, and domains of care. It is clear that there are a variety of types of programs and that the field is still developing. More work is needed to determine which quality measures are needed to address perinatal care needs in this population.
Wool C; Cote-Arsenault D; Perry Black B; Denney-Koelsch E; Kim S; Kavanaugh K
Journal Of Palliative Medicine
2016
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).
DOI: 10.1089/jpm.2015.0266
“the Nice Thing About Doctors Is That You Can Sometimes Get A Day Off School”: An Action Research Study To Bring Lived Experiences From Children, Parents And Hospice Staff Into Medical Students’ Preparation For Practice.
Adolescent; Child; Clinical Competence/standards; Education Medical/standards; Female; Focus Groups; Health Services Research; Hospice Care/standards; Humans; Male; Pediatrics/education; Pediatrics/standards; Physician-patient Relations
Education And Training; Hospice Care; Pediatrics; Palliative Care; Qualitative Research
Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical education of children and parents using hospice services has not yet been fully explored.
OBJECTIVES:
(1) To explore perceptions of what medical students must learn to become 'good doctors' among children, parents and staff in a hospice. (2) To collaborate with children/parents and staff to develop educational materials based on their lived experiences for medical students. (3) To assess feasibility of student-led action research in a children's hospice to develop research skills.
METHODS:
Prospective ethical approval received. Volunteer children (n=7), parents (n=5) and staff (n=6) were recruited from a children's hospice. Data were generated in audio-recorded semistructured focus groups, individual interviews and/or activity workshops. Participants discussed what newly qualified doctors' needed to care for children with life-limiting conditions. Audio data were transcribed and combined with visual data for thematic analysis. Findings were refined by participant feedback. This paper presents thematic findings and educational material created from the project.
RESULTS:
Thematic analysis identified six learning themes: (1) treat children as individuals; (2) act as a person before being a doctor; (3) interpersonal communication; (4) appreciate the clinical environment; (5) learn from children, parents and other staff; (6) how to be a doctor as part of a team. The student researcher successfully developed qualitative research skills, coproducing materials with participants for sharing learning derived from lived experiences.
CONCLUSIONS:
All participants were willing and able to make valuable contributions, and believed that this was a worthwhile use of time and effort. Further work is required to understand how best to integrate the experiences of children in hospices into medical education.
Spalding J; Yardley S
Bmj Supportive & Palliative Care
2016
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Death Talk: Basic Linguistic Rules And Communication In Perinatal And Paediatric End-of-life Discussions.
Communication; Death; Decision Making; Female; Humans; Linguistics; Male; Parents/psychology; Pediatrics; Perinatal Death; Pregnancy; Professional-family Relations; Terminal Care/methods; Terminally Ill
Consumer Health Information; Decision-making; End-of-life Care; Health Communication
OBJECTIVE:
This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory.
METHODS:
Grice's Cooperative Principle and associated maxims, which enable effective communication, are examined in relation to communication deficiencies that parents have identified when making end-of-life decisions for the child. Examples from the literature are provided to clarify the impact of failing to observe the maxims on parents and on clinician/parent communication.
RESULTS:
Linguistic theory applied to the literature on parental concerns about clinician/parent communication shows that the violation of the maxims of quantity, quality, relation, and manner as well as the stance that some clinicians adopt during discussions with parents impact on clinician/parent communication and lead to distrust, anger, sadness, and long-term difficulties coping with the experience of losing one's child.
CONCLUSION:
Parents have identified communication deficiencies in end-of-life discussions. Relating these communication deficiencies to linguistic theory provides insight into communication difficulties but also solutions.
PRACTICE IMPLICATIONS:
Gaining an understanding of basic linguistic theory that underlies human interactions, gaining insight into the communication deficiencies that parents have identified, and modifying some communication behaviours in light of these with the suggestions made in this article may lead to improved clinician/parent communication.
Xafis V; Watkins A; Wilkinson D
Patient Education And Counseling
2016
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).
Elective Ventilation To Facilitate Organ Donation In Infants With Anencephaly: Perinatal Professionals’ Views And An Ethical Analysis.
Anencephaly/diagnosis; Anencephaly/therapy; Attitude Of Health Personnel; Ethical Analysis; Female; Humans; London; Male; Palliative Care/ethics; Palliative Care/methods; Perinatal Care/ethics; Perinatal Care/methods; Pregnancy; Prenatal-diagnosis; Respiration Artificial/ethics; Tissue And Organ Procurement/ethics
Ethics; Major Congenital Anomaly; Neonates; Organ Donation
AIM:
Following the elective ventilation and referral for organ donation of an infant with anencephaly, we sought local perinatal professionals' views of this practice.
METHODS:
Anonymous online survey: demographics, ethical viewpoints and potential public/maternal perceptions (standard 5-part Likert scale and free text).
RESULTS:
DEMOGRAPHICS:
49 replies (38 female): 4 obstetricians, 14 neonatologists, 6 foetal clinicians, 23 nurses, 1 anaesthetist and 1 reproductive specialist.
EXPERIENCE:
0.5-33 years (average 12). Twenty-one had experience of anencephalic delivery, and 10 reported pregnancy continued for religious reasons.
ETHICS:
(i) 73% thought anencephalic donation acceptable, of which 64% supported elective ventilation, 20% neutral and 16% disagreed. (ii) Provision of treatments not in infant's strict best interest to facilitate donation: 22% strongly agreed, 36% agreed, 33% neutral and 9% disagreed. (iii) Accept ventilation to permit donation if societal benefit: 53% agreed, 33% neutral and 13% disagreed. (iv) Public opinion: 59% disagreed anencephalic donation would harm public opinion about donation and 19% agreed.
CONCLUSION:
We found a supportive local environment for donation in the setting of anencephaly, including support for elective ventilation. Given this, and our ethical analysis, we recommend provision of organ donation information as part of palliative care counselling for women carrying a foetus with a condition likely to be fatal in infancy.
Jivraj A; Scales A; Brierley J
International Journal Of Paediatrics
2016
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Ethical Dilemmas In Postnatal Treatment Of Severe Congenital Hydrocephalus.
Decision Making/ethics; Ethics Medical; Female; Humans; Hydrocephalus/diagnosis; Hydrocephalus/therapy; Infant; Infant Premature; Intensive Care Neonatal/ethics; Male; Medical Futility/ethics; Postnatal Care/ethics; Quality Of Life; Severity Of Illness Index; Ventriculoperitoneal Shunt/ethics; Withholding Treatment/ethics
Children; Hydrocephalus; Medical Ethics; Medical Futility; Neonatal Intensive Care Unit; Withdrawing Treatment
Severe congenital hydrocephalus manifests as accumulation of a large amount of excess fluid in the brain. It is a paradigmatic example of a condition in which diagnosis is relatively straightforward and long-term survival is usually associated with severe disability. It might be thought that, should parents agree, palliative care and limitation of treatment would be clearly permissible on the basis of the best interests of the infant. However, severe congenital hydrocephalus illustrates some of the neuroethical challenges in pediatrics. The permissibility of withholding or withdrawing treatment is limited by uncertainty in prognosis and the possibility of "palliative harm." Conversely, although there are some situations in which treatment is contrary to the interests of the child, or unreasonable on the grounds of limited resources, acute surgical treatment of hydrocephalus rarely falls into that category.
Wilkinson D
Cambridge Quarterly Of Healthcare Ethics
2016
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Parental Decision-making On
Utilisation Of Out-of- Home Respite In Children’s Palliative Care: Findings Of
Qualitative Case Study Research - A Proposed New Model.
Adolescent; Adult; Child; Child Preschool; Decision Making; Female; Humans; Ireland/epidemiology; Longitudinal Studies; Male; Palliative Care/psychology; Parents/psychology; Qualitative Research; Quality Of Health Care; Respite Care; Social Support; Terminally Ill/psychology
Children; Pediatrics; Palliative Care; Parents; Respite
Background
Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the child's age, diagnosis, geographical location and the family's capacity to meet their child's care needs. A proposed model for out-of-home respite has been developed based on the findings of qualitative case study research.
Methods
Utilising multiple, longitudinal, qualitative case study design, the respite needs and experiences of parents caring for a child with a life-limiting condition were explored. Multiple, in-depth interviews were undertaken with the parents identified by a hospital-based children's palliative care team. Data were analysed using thematic analysis. Each individual case consists of a whole study. Cross-case comparison was also conducted.
Results
Nine families were recruited and followed for two years. A total of 19 in-depth interviews were conducted with mothers and fathers (one or both) caring for a child with a life-limiting condition in Ireland. Each family reported vastly different needs and experiences of respite from their own unique perspective. Cross-case comparison showed that for all parents utilising respite care, regardless of their child's age and condition, home was the location of choice. Many interlinking factors influencing these decisions included: past experience of in-patient care, and trust and confidence in care providers. Issues were raised regarding the impact of care provision in the home on family life, siblings and the concept of home.
Conclusion
Respite is an essential element of children's palliative care. Utilisation of out-of-home respite is heavily dependent on a number of interlinked and intertwined factors. The proposed model of care offers an opportunity to identify how these decisions are made and may ultimately assist in identifying the elements of responsive and family-focused respite that are important to families of children with life-limiting conditions.
Ling J; Payne S; Connaire K; McCarron M
Child: Care, Health And Development
2016
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Perceptions Of Palliative Care In The Nicu.
Communication; Continuity Of Patient Care; Emotions; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Interviews As Topic; Male; Mothers/psychology; Palliative Care/utilization; Privacy; Qualitative Research; Social Support
BACKGROUND AND PURPOSE:
The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study objective was to examine provision of PC as experienced by mothers and healthcare providers (HCPs) of NICU patients with life-threatening illnesses. Palliative care components explored included communication, choices, comfort, psychosocial and spiritual needs, and coordination of care.
METHODS:
In this qualitative, descriptive study, we conducted semistructured interviews with mothers of infants with life-threatening illnesses and NICU HCPs who cared for these infants. Mothers selected HCPs who were key figures during their infant's NICU stay to participate. Interviews were transcribed and manually coded until themes emerged and theoretical saturation was achieved. Researchers reviewed charts for demographics and notes pertaining to PC. Triangulation of maternal interviews, HCP interviews, and chart notes was performed.
RESULTS:
Theoretical saturation was achieved after 12 interviews. Mothers identified 5 nurses and 1 physician to be interviewed. Five themes were identified following data analysis and triangulation: (1) communication, (2) privacy, (3) continuity of care and relationship building, (4) maternal knowledge seeking, and (5) emotional turmoil.
IMPLICATIONS FOR PRACTICE AND RESEARCH:
Of domains of pediatric PC explored, participants emphasized transparent communication, family meetings as a venue for collaboration and shared decision making, the significance of psychosocial support for maternal emotional distress, and the importance of continuity of care across an often long and stressful hospitalization. Although mothers desired privacy, participants valued the security of the open-room NICU design. Future research should address components of PC that predominate in this specialized population.
Falck AJ; Moorthy S; Hussey-Gardner B
Advances In Neonatal Care
2016
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When Parents Face The Death Of Their Child: A Nationwide Cross-sectional Survey Of Parental Perspectives On Their Child’s End- Of Life Care.
Attitude Of Health Personnel; Attitude To Death; Cross-sectional Studies; Death; Decision Making; Female; Humans; Infant Newborn; Male; Parents/psychology; Pediatrics/standards; Perception; Resuscitation Orders/psychology; Surveys And Questionnaires; Switzerland; Terminal Care/standards
Pediatrics; End Of Life; Terminal Care; Questionnaire Survey; Parental Perspectives
Background
Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services.
Methods
Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure.
Results
Of 307 eligible families, 267 could be contacted and 135 (51 %) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child’s EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences.
Conclusions
Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.
Zimmermann K; Bergstraesser E; Engberg S; Ramelet AS; Marfurt-Russenberger; Nicolas Von der Weid; Chantal Grandjean; Patricia Fahrni-Nater; Eva Cignacco
K; Von der Weid N
Bmc Palliative Care
2016
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Limiting And Withdrawing Life Support In The Picu: For Whom Are These Options Discussed?
Child; Child Preschool; Critical Care/methods; Female; Humans; Infant; Intensive Care Units Pediatric; Length Of Stay; Life Support Care/utilization; Logistic Models; Male; Prospective Studies; Resuscitation Orders; Severity Of Illness Index; Terminal Care/methods
Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or withdrawal of life support with clinicians during their child's PICU stay and to determine the factors associated with limitation or withdrawal of life support discussions.
DESIGN:
Secondary analysis of data prospectively collected from a random sample of children admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013.
SETTING:
Seven clinical sites affiliated with the Collaborative Pediatric Critical Care Research Network.
PATIENTS:
Ten thousand seventy-eight children less than 18 years old, admitted to a PICU, and not moribund at admission.
INTERVENTIONS:
None.
MEASUREMENTS AND MAIN RESULTS:
Families of 248 children (2.5%) discussed limitation or withdrawal of life support with clinicians. By using a multivariate logistic model, we found that PICU admission age less than 14 days, reduced functional status prior to hospital admission, primary diagnosis of cancer, recent catastrophic event, emergent PICU admission, greater physiologic instability, and government insurance were independently associated with higher likelihood of discussing limitation or withdrawal of life support. Black race, primary diagnosis of neurologic illness, and postoperative status were independently associated with lower likelihood of discussing limitation or withdrawal of life support. Clinical site was also independently associated with likelihood of limitation or withdrawal of life support discussions. One hundred seventy-three children (69.8%) whose families discussed limitation or withdrawal of life support died during their hospitalization; of these, 166 (96.0%) died in the PICU and 149 (86.1%) after limitation or withdrawal of life support was performed. Of those who survived, 40 children (53.4%) were discharged with severe or very severe functional abnormalities, and 15 (20%) with coma/vegetative state.
CONCLUSIONS:
Clinical factors reflecting type and severity of illness, sociodemographics, and institutional practices may influence whether limitation or withdrawal of life support is discussed with families of PICU patients. Most children whose families discuss limitation or withdrawal of life support die during their PICU stay; survivors often have substantial disabilities.
Keele L; Meert KL; Berg RA; Dalton H; Newth CJ; Harrison R; Wessel DL; Shanley T; Carcillo J; Morrison W; Funai T; Holubkov R; Dean JM; Pollack M
Pediatric Critical Care Medicine
2016
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doi: 10.1097/PCC.0000000000000614
Listening To Parents: The Role Of Symptom Perception In Pediatric Palliative Home Care
Adult; Cross-sectional Studies; Death; Dyspnea/diagnosis; Dyspnea/psychology; Female; Home Care Services/standards; Humans; Male; Pain/diagnosis; Pain/psychology; Palliative Care/methods; Palliative Care/psychology; Parents/psychology; Pediatrics/methods; Perception; Quality Of Life/psychology; Retrospective Studies; Surveys And Questionnaires; Symptom Assessment/psychology
End-of-life Symptoms; Pediatric Palliative Home Care; Symptom Perception
OBJECTIVE:
This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children.
METHODS:
In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).
RESULTS:
Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.
Vollenbroich R; Borasio GD; Duroux A; Grasser M; Brandstatter M; Fuhrer M
Palliative & Supportive Care
2016
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DOI: 10.1017/S1478951515000462
Staff Efficiency Trends Among Pediatric Hospices, 2002-2011.
Adolescent; California; Child; Child Preschool; Efficiency Organizational/statistics & Numerical Data; Female; Forecasting; Hospice Care/statistics & Numerical Data; Hospice Care/trends; Hospice Care/statistics & Numerical Data; Hospices/trends; Hospitals Pediatric/statistics & Numerical Data; Hospitals Pediatric; Humans; Infant; Infant Newborn; Male; Personnel Staffing And Scheduling/statistics & Numerical Data; Personnel Staffing And Scheduling/trends; Workload/statistics & Numerical Data; Young Adult
This study provided the first examination of staff efficiency trends among pediatric hospices. Although pediatric staff efficiency demonstrated large variability from 2002 to 2011, the general trend in efficiency from 2003 to 2010. The decline in efficiency means, on average, pediatric hospices had higher operating expenses and used more capacity, but greater amounts of these greater outputs as measured by visits per patient. The study also highlights the crucial role pediatric hospice nurse managers play in developing effective workforce strategies that allow for responsive changes to workload fluctuations. Due to the associations between efficiency, regulation, and growth, nurse leaders' abilities to develop effective strategies are more imperative than ever to ensure quality end-of-life care for children and their families.
Cozad MJ; Lindley LC; Mixer SJ
Nursing Economic$
2016
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PMCID: PMC5045247
Family And Healthcare Professionals’ Perceptions Of A Pilot Hospice At Home Programme For Children: A Qualitative Study
Adaptation Psychological; Attitude Of Health Personnel; Child; Child Health Services; Critical Illness/psychology; Disabled Children; Family/psychology; Female; Hospice Care/psychology; Humans; Interviews As Topic; Male; Nurses/psychology; Pilot Projects
Hospice And Palliative Care Nursing; Child Family Qualitative Research
Background
Parents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the experiences of families receiving a nurse led pilot hospice at home programme and the experiences of healthcare professionals delivering and engaging with the programme.
Methods
An exploratory, qualitative study was conducted, including telephone interviews with parents and focus groups and individual interviews with healthcare professionals. All parents of families who received the programme of care between June 2014 and September 2015 and healthcare professionals delivering and engaging with the programme were invited to participate.
Results
Seven parents participated in telephone interviews. Four focus groups took place, two with external stakeholders (18 participants in total), one with in-patient hospice staff (13 participants) and one with the hospice at home team (8 participants). Two additional interviews took place with individual stakeholders who were unable to attend a scheduled focus group. Themes from interviews with parents focused on the value of having consistent and expert care. The findings from healthcare professionals centred on communication within and across services, education and training and lone working.
Conclusions
The pilot hospice at home programme was welcomed by all those who took part in the study. The programme may be improved by enhanced clarification of roles, enhanced access to multi-disciplinary services, greater communication across services and improved information provision to families.
Maria Brenner; Michael Connolly; Des Cawley; Frances Howlin; Jay Berry; Claire Quinn
Bmc Palliative Care
2016
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DOI: 10.1186/s12904-016-0161-0
Pediatric Palliative Care Pilot Curriculum: Impact Of "pain Cards" On Resident Education
Adult; Communication; Curriculum; Female; Health Knowledge Attitudes Practice; Hospitals Pediatric/organization & Administration; Humans; Internship And Residency/methods; Male; Pain Management; Pain Measurement; Palliative Care; Pediatrics/education; Pilot Projects
Palliative Care Curriculum; Palliative Care Education; Pediatric Palliative Care; Pediatric resident; Pocket cards; Resident education
BACKGROUND:
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved comfort and/or knowledge with palliative care principles. The purpose of this study was to test a pocket card educational intervention regarding resident knowledge and comfort with palliative care principles.
METHODS:
Pocket reference cards were created to deliver fundamentals of pediatric palliative care to resident learners; didactics and case studies emphasized principles on the cards. Self-reported comfort and objective knowledge were measured before and after the curriculum among residents.
RESULTS:
Of 32 post-graduate year 2 (PGY2) residents, 23 (72%) completed the pre-test survey. The post-test was completed by 14 PGY2 residents (44%) and 16 of 39 PGY3/4 residents (41%). There was improvement in comfort with communication, as well as pain and symptom management among the residents. Knowledge of palliative care principles improved in part, with only a few survey questions reaching statistical significance. 100% of respondents recommended the cards be provided to their colleagues.
CONCLUSION:
This longitudinal curriculum, designed specifically for pediatric residents, was built into an existing training program and proved to be popular, feasible, and effective at improving comfort with basic palliative care principles.
Barnett MD; Maurer SH; Wood GJ
American Journal Of Hospice And Palliative Medicine
2016
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DOI: 10.1177/1049909115590965
Perceptions Of The Pediatric Hospice Experience Among English- And Spanish-speaking Families
Adolescent; Adult; Attitude To Death/ethnology; Caregivers/psychology; Child; Child Preschool; Communication; Ethnic Groups/psychology; European Continental Ancestry; Group/psychology; Family/psychology; Female; Hispanic Americans/psychology; Hospice Care/psychology; Humans; Infant; Male; Middle Aged; Neoplasms/nursing; Neoplasms/psychology; Young Adult
OBJECTIVE:
Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the hospice experience in children with cancer, and to explore how race/ethnicity impacts this experience.
STUDY DESIGN:
We held 20 semistructured interviews with 34 caregivers of children who died of cancer and used hospice. Interviews were conducted in the caregivers' primary language: 12 in English and 8 in Spanish. Interviews were recorded, transcribed, and analyzed using accepted qualitative methods.
RESULTS:
Both English and Spanish speakers described the importance of honest, direct communication by medical providers, and anxieties surrounding the expectation of the moment of death. Five English-speaking families returned to the hospital because of unsatisfactory symptom management and the need for additional supportive services. Alternatively, Spanish speakers commonly stressed the importance of being at home and did not focus on symptom management. Both groups invoked themes of caregiver appraisal, but English-speaking caregivers more commonly discussed themes of financial hardship and fear of insurance loss, while Spanish-speakers focused on difficulties of bedside caregiving and geographic separation from family.
CONCLUSIONS:
The intense grief associated with the loss of a child creates shared experiences, but Spanish- and English-speaking parents describe their hospice experiences in different ways. Additional studies in pediatric hospice care are warranted to improve the care we provide to children at the end of life.
Thienprayoon R; Marks E; Funes M; Martinez-Puente LM; Winick N; Lee SC
Journal Of Palliative Medicine
2016
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).
DOI: 10.1089/jpm.2015.0137
How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.
Adolescent; Adult; Attitude Of Health Personnel; Attitude To Health; Cerebral Palsy; Child; Child Preschool; Decision Making; Disabled Children; Dissent And Disputes; Female; Humans; Infant; Infant Newborn; Intellectual Disability; Male; Middle Aged; Neurologists; Palliative Care; Parents; Pediatricians; Professional-family Relations; Qualitative Research; Resuscitation Orders; Retrospective Studies; Severity Of Illness Index; Terminal Care; Young Adult
Caregiver; End Of Life; Healthcare Professional; Intellectual Disability; Qualitative Research; Shared Decision-making
BACKGROUND:
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD.
METHODS:
In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years.
RESULTS:
A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept.
CONCLUSION:
The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD.
Zaal-Schuller IH; Willems DL; Ewals FV; van Goudoever JB; de Vos MA
Research In Developmental Disabilities
2016
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).
DOI: 10.1016/j.ridd.2016.09.012
Acceptability Of Family-centered Advanced Care Planning For Adolescents With Hiv
Adolescent Health Services/sn [statistics & Numerical Data]; Advance Care Planning; Family/px [psychology]; Hiv Infections/th [therapy]; Patient Acceptance Of Health Care/sn [statistics & Numerical Data]; Adolescent; Family Nursing; Female; Hiv Infections/px [psychology]; Humans; Male; Prospective Studies; Surveys And Questionnaires; United States; Young Adult
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial. METHODS: We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-session-a-week 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention (1, ACP Survey; 2, Goals of Care Conversation/Treatment Preferences; 3, Completion of Advance Directive) or active comparator (1, Developmental History; 2, Safety Tips; 3, Nutrition/Exercise). The Satisfaction Questionnaire was administered to participants independently after each session by a blinded research assistant. RESULTS: We enrolled 53% of eligible participants and intervened with 97 adolescent/family dyads. Adolescents ranged in age from 14 to 21 years; 54% were male individuals; 93% African American; and 73% perinatally infected. Attendance was 99% for all 3 sessions in each arm. At session 3, FACE adolescents and family dyad members, respectively, found the session useful (98%, 98%) and helpful (98%, 100%), despite feelings of sadness (25%, 17%). FACE adolescents' improvement in the total subscale A score (useful, helpful, like a load off my mind, satisfied, something I needed to do, courageous, worthwhile) was better than control adolescents at session 3 (beta = 1.16, P = .02). There were no adverse events. CONCLUSIONS: FACE enabled worthwhile conversations, while simultaneously eliciting intense emotions. No participants withdrew, 99% of those enrolled completed each session, and there were no adverse events, evidence of pACP's feasibility, acceptability, and safety.
Dallas R H; Kimmel A; Wilkins M L; Rana S; Garcia A; Cheng Y I; Wang J; Lyon M; Adolescent Palliative Care Consortium
Pediatrics
2016
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).
10.1542/peds.2016-1854
Limiting And Withdrawing Life Support In The Picu: For Whom Are These Options Discussed?
Critical Care/mt [methods]; Intensive Care Units Pediatric; Life Support Care/ut [utilization]; Resuscitation Orders; Terminal Care/mt [methods]; Child; Child Preschool; Female; Humans; Infant; Length Of Stay; Logistic Models; Male; Prospective Studies; Severity Of Illness Index
OBJECTIVES: Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or withdrawal of life support with clinicians during their child's PICU stay and to determine the factors associated with limitation or withdrawal of life support discussions. DESIGN: Secondary analysis of data prospectively collected from a random sample of children admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013. SETTING: Seven clinical sites affiliated with the Collaborative Pediatric Critical Care Research Network. PATIENTS: Ten thousand seventy-eight children less than 18 years old, admitted to a PICU, and not moribund at admission. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Families of 248 children (2.5%) discussed limitation or withdrawal of life support with clinicians. By using a multivariate logistic model, we found that PICU admission age less than 14 days, reduced functional status prior to hospital admission, primary diagnosis of cancer, recent catastrophic event, emergent PICU admission, greater physiologic instability, and government insurance were independently associated with higher likelihood of discussing limitation or withdrawal of life support. Black race, primary diagnosis of neurologic illness, and postoperative status were independently associated with lower likelihood of discussing limitation or withdrawal of life support. Clinical site was also independently associated with likelihood of limitation or withdrawal of life support discussions. One hundred seventy-three children (69.8%) whose families discussed limitation or withdrawal of life support died during their hospitalization; of these, 166 (96.0%) died in the PICU and 149 (86.1%) after limitation or withdrawal of life support was performed. Of those who survived, 40 children (53.4%) were discharged with severe or very severe functional abnormalities, and 15 (20%) with coma/vegetative state. CONCLUSIONS: Clinical factors reflecting type and severity of illness, sociodemographics, and institutional practices may influence whether limitation or withdrawal of life support is discussed with families of PICU patients. Most children whose families discuss limitation or withdrawal of life support die during their PICU stay; survivors often have substantial disabilities.
Keele L; Meert KL; Berg RA; Dalton H; Newth CJ; Harrison R; Wessel DL; Shanley T; Carcillo J; Morrison W; Funai T; Holubkov R; Dean JM; Pollack M; Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network
Pediatric Critical Care Medicine
2016
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).
10.1097/PCC.0000000000000614
Listening To Parents: The Role Of Symptom Perception In Pediatric Palliative Home Care
Perception; Procedures; Adult; Cross Sectional Study; Death; Dyspnea/di [diagnosis]; Female; Home Care; Human; Male; Pain/di [diagnosis]; Palliative Therapy; Parent; Pediatrics; Psychology; Quality Of Life; Questionnaire; Retrospective Study; Standards; Symptom Assessment
RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care. OBJECTIVE: This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. METHODS: In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).
Vollenbroich R; Borasio GD; Duroux A; Grasser M; Brandstatter M; Fuhrer M
Palliative & Supportive Care
2016
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).
10.1017/S1478951515000462
Child Death And Deterioration Review Group
Child Death; Deterioration; Adoption; Adverse Drug Reaction; Case Study; Cause Of Death; Child; Clinical Article; Controlled Study; Female; Health Care Quality; Human; Learning; Male; Nursing Staff; Palliative Therapy; Perception; Side Effect; Student; Trust
Background In order to improve outcomes for acutely unwell children and young people it is essential to learn from those cases in which children deteriorate and die. In our trust there was no universal record of child deaths or deteriorations and no over view of cases to identify learning, either positive or developmental. Aims The child death and deterioration (CDAD) review group was formed to enable a rapid multi-disciplinary timely review of every child death and unplanned PICU admissions. It allows concerns related to the care or cause of death to be identified, identifies need for more detailed reviews, investigation of adverse events and noting of good practice. Methods Group includes senior doctors and nursing staff, palliative care and risk team. Weekly meetings review cases from the preceding week. Cases are allocated 15 min and the patient's team (ideally medical and nursing) presents. Trainees are encouraged to attend. Cases are discussed, actions generated and graded 1-6 according to standard of care given. We also gather parent/patient feedback regarding unplanned PICU admissions to help provide insight into the perception they have of care provided. Results/measures Over the first year of CDAD, 38 child deaths and 138 unplanned PICU admissions have been reviewed. Various data including demographics, clinical area admitted from, involvement of outreach and palliative care teams, cause of death/deterioration and clinical grading are available (see figures 1-4). Multiple lessons of positive and negative practices as well as action plans are collated and fed back via care groups QuEST (M and M type) meeting. Favourable event reporting forms are completed for individuals and teams who have delivered excellent care. Lessons for practice Good discussion between professional groups and different specialities occurs including consideration of number areas of non technical elements. This has identified system, human interaction, equipment, environment and personal factors (including knowledge) that can be improved as well as a number of areas of good practice for spread and adoption.
Alderton M; Pryde K
Archives Of Disease In Childhood
2017
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).
10.1136/archdischild-2017-313087.20
Problematic Symptoms In Children Attending For Short Breaks At A Children's Hospice; Are We Missing An Opportunity For Symptom Assessment And Management?
Female; Hospice; Male; Symptom Assessment; Child; Clinical Article; Clinical Nurse Specialist; Diagnosis; Family Study; Health Care Delivery; Human; Information Processing; Irritability; Nursing; Pain Assessment; Pediatrician; School Child; Seizure; Sleep
Aim Symptom assessment is a core component of paediatric palliative care. This audit aimed to determine whether the symptoms of children attending for routine short breaks in a children's hospice were assessed. The development of a formal symptom assessment team is also described. Methods The admission notes of all children attending for respite over a 2 week period in Feb 2016 were examined and data collected on Excel. The data was pulled from Vitro an online data system used within the hospice to record all nursing, medical and multi-disciplinary notes and all contacts with the family and professionals. Information gathered included diagnoses and ACT category, problematic symptoms and the use of formal symptom assessment tools. Results A total of 22 children attended for respite over the first 2 weeks of February 2016. The average age was 7 years 2 months with a range of 1 year 11 months to 17 years. A broad range of conditions were included, the majority were from ACT category 4. As described in previous studies of children with life-limiting conditions there was a high burden of problematic symptoms among the children. 16/22 children were noted to have at least 1 symptom on the routine respite admission paperwork and nursing notes identified ongoing symptoms during the short break in 12 of the 24 children. 7/22 had respiratory symptoms, 2/22 had problematic seizures. Irritability and pain were noted in 2/22 and 3/22 respectively. 3/22 children were recorded as having poor sleep. Disappointedly although symptoms were recognised, symptom management action was only taken in 5 cases. No formal recognised symptom management tool was used. Of note the FLACC pain scale has been incorporated into the hospice paperless chart but was not used in any case. Outcome The results of the initial audit highlighted the need to change service delivery and a new symptom assessment service incorporating a clinical nurse specialist and paediatrician with support from the broader clinical team has been developed. To date 14 children have received support from the symptom assessment team and a reaudit of routine short breaks in ongoing.
Balfe J M; Booth A; Ritchie B
Archives Of Disease In Childhood
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/10.1136/archdischild-2017-313087.515" target="_blank" rel="noreferrer">10.1136/archdischild-2017-313087.515</a>
Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study
Cardiologist; Controlled Study; Heart Failure; Palliative Therapy; Pediatric Cardiology; Terminal Care; Cardiac Surgeon; Child; Clinical Study; Clinical Trial; Controlled Clinical Trial; Female; Human; Intensivist; Life Expectancy; Male; Medical School; Multicenter Study; Skill
While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur "too late" and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as "referring to palliative care services too early will undermine parents' hope" (45%) and "concern that parents will think I am giving up on their child" (56%). Only 33% of cardiologists reported feeling "very" or "moderately" competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6-8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8-21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease.
Balkin E M; Kirkpatrick J N; Kaufman BD; Swetz K M; Sleeper L A; Wolfe J; Blume E D
Pediatric Cardiology.
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).
10.1007/s00246-017-1663-0
The Impact Of A Sibling's Life-limiting Genetic Condition On Adult Brothers And Sisters
Family Attitude; Sibling; Sibling Attitude; Trisomy 13; Trisomy 18; Adult; Article; Brother; Coping Behavior; Female; Genetic Disorder; Grief; Human; Male; Parental Attitude; Peer Group; Priority Journal; Psychological Resilience; Qualitative Analysis; Sister; Structured Interview; Wellbeing
It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a qualitative approach with in-depth semi-structured interviews to explore the experiences of 10 adult siblings of a baby diagnosed with Trisomy 13 (Patau syndrome) or Trisomy 18 (Edward syndrome). Findings illustrate that parental grief from the time of their child's diagnosis onward is also experienced by siblings. Although young adults may have conflicting feelings as a bereaved sibling, there is evidence that the experience impacts on their world views and their attitudes about prospective and expectant parenthood. The study highlights the importance of providing siblings with short-term and long-term support from the time of their brother's or their sister's diagnosis onward and provides new understanding about benefit of professional and peer support in helping young adults develop resilience and coping strategies.
Brown E; Coad J; Franklin A
American Journal Of Medical Genetics Part A
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).
10.1002/ajmg.a.38213
Evaluating Palliative Care Training Experiences Of Paediatric Trainees Across Scotland
Palliative Therapy; Scotland; Student; Analgesia; Child; Consensus Development; Exposure; Family Study; Female; Grief; Human; Human Experiment; Male; Nausea And Vomiting; Recipient; Simulation Training; Sudden Infant Death Syndrome; Symptom; Teaching
Aim To determine the experience of training in paediatric palliative medicine (PPM) among trainees, to identify how well trainees were able to meet RCPCH competences in PPM, and to explore educational opportunities desired by trainees to enhance current PPM training. Methods A semi-structured survey, containing 22 questions, was sent by email to all 4 Paediatric Training programme directors in Scotland (North, East, South East and West) for onward distribution to paediatric trainees (ST1-ST8) between October 2015 and October 2016. Questions explored PPM teaching experience, trainees confidence in achieving RCPCH palliative care competences, and identification additional training desired. Results 60 (54%) recipients responded; 27 (45%) level one; 13 (22%) level two, and 20 (33%) level three. 50 (81%) respondents had undertaken all their paediatric training in Scotland. The majority of trainees had limited exposure to dedicated PPM training: 26 (42%) stated they had no training and 25 (40%) had completed 1-2 teaching sessions in PPM. Grading their ability to meetthe RCPCH palliative care competences 35 (63%) felt confident in the recognition of loss and grief and their effects 42 (70%) in understanding the need to respect the wishes of the child and family, but only 30 (50%) in their knowledge of the guidelines on withholding and withdrawing treatment and the local and national guidance on sudden infant death (SUDE). Regarding symptom management and recognition of the palliative phase of a patient journey, respondents were neutral or in disagreement that they had gained sufficient experience to be clinical competent in these fields (70% and 58% respectively). Trainees identified numerous areas in which they desired additional training: 85% on guidance around withholding and withdrawing treatment; 68% on anticipatory care planning; 67% on pain management and 55% on management of nausea and vomiting. Trainees responded positively when asked if simulation training would enhance PPM training, particularly around breaking bad news (86%), and anticipatory care planning and limitations of treatment (81%). Conclusion Paediatric trainees have limited exposure to designated PPM training in Scotland and identified that this lack of training opportunities negatively impacts on their clinical knowledge and competence. Training and education is strongly desired in a number of areas with simulation being identified as a useful method of delivering training when there is inadequate clinical exposure to PPM.
Downie J; Bland R M
Archives Of Disease In Childhood
2017
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10.1136/archdischild-2017-313087.504
Updated Perinatal Palliative Standards Emphasise Choice And Bereavement Support
Bereavement; Palliative Care/st [standards]; Perinatal Death; Female; Humans; Infant Newborn; Neonatal Nursing; Palliative Care/ma [manpower]; Practice Guidelines As Topic; Pregnancy; United Kingdom
Ana Todorovic's baby, Nadia, died just before birth. Ana says she received excellent care and was told when 37 weeks pregnant that Nadia was not going to survive for long.
Evans N
Nursing Children And Young People
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).
10.7748/ncyp.29.5.8.s8