Parents' Experience Of A Follow-up Meeting After A Child's Death In The Paediatric Intensive Care Unit.
Fundin Intensive Care Nursing Nurses Meetings Intervention Parents & Parenting Studies Interviews Families & Family Life Interdisciplinary Aspects Hospitals
Child Death; Follow-up; Picu; Paediatric Intensive Care; Parent's Experience; Qualitative
OBJECTIVE:
'To identify parents' experience of a follow up meeting and to explore whether the conversation was adequate to meet the needs of parents for a follow-up after their child's death in the Paediatric Intensive Care Unit (PICU).
DESIGN AND SETTING:
Qualitative method utilising semi-structured interviews with six pairs of parents 2-12 weeks after the follow-up conversation. The interviews were held in the parents' homes at their request. Data were analysed using a qualitative, descriptive approach and thematic analysis.
FINDINGS:
Four main themes emerged: (i) the way back to the PICU; (ii) framework; (iii) relations and (iv) closure.
CONCLUSION:
The parents expressed nervousness before the meeting, but were all pleased to have participated in these follow-up meetings. The parents found it meaningful that the follow-up meeting was interdisciplinary, since the parents could have answers to their questions both about treatment and care. It was important that the staff involved in the follow-up meeting were those who had been present through the hospitalisation and at the time of the child's death. Parents experienced the follow-up meeting as being a closure of the course in the PICU, regardless the length of the hospitalisation.
HL Brink
Intensive And Critical Care Nursing
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1016/j.iccn.2016.06.006
Thoughtfulness And Grace: End-of-life Decision Making For Children With Severe Developmental Disabilities
Child Developmental-disabilities Decision Makinghumans Intellectual Disability Terminal Care
PM Jones
American Journal Of Bioethics
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: 10.1080/15265161.2015.1132046
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
Pediatric Palliative Care: Comprehensive Support For Children
Local Dr Project; Pediatric Palliative Care; Symptom Management
Palliative Care (PC), is the set of actions and tools that seek relief from symptoms and suffering of patients and their families to diseases that threaten their lives. This support includes different types of resources covering the clinical, socio‑economic, emotional, psychological and spiritual aspects. Due to increasing life expectancy of humans and the fact that chronic diseases account for 60% of premature death, mainly due to cardiovascular diseases, neurological and malignant tumors; has been the global need to create, implement, and enhance knowledge and PC local programs. In pediatrics, there are four main reasons why a child can and should receive pediatric palliative care (PPC): Cancer, Cystic fibrosis, Metabolic or Mitochondrial and/or Progressive Muscle Diseases and Neurological Disorders. In this article we analyze synthetically the definition, types and basic definitions on the CPP matter. Also, we share the local experience about the first pediatric palliative care program focus in oncologic patients on the Dominican Republic. To review the basics and history of palliative care. To establish the goals and definition of pediatric palliative care, symptom management, terminal illness and integral support. To describe the local pediatric palliative care in oncology unit at Dr. Robert Reid Cabral Children’s Hospital in Dominican Republic as the first PPC local program in the country for children with cancer.
W C Gomez Garcia
Acta Medica International
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:10.5530/ami.2016.2.32
Parental Hopes, Interventions, And Survival Of Neonates With Trisomy 13 And Trisomy 18
End-of-life Decision Making; Palliative Care; Perinatal Hospice; Perinatal Palliative Care; Prenatal Diagnosis; Trisomy 13; Trisomy 18
Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of children who lived with trisomy 13 or 18 that were part of English-speaking social networks were invited to participate in a questionnaire study. Participants answered questions about their hopes/goals, decisions regarding neonatal interventions, and the duration of their children's lives. The participants were 332 parents who answered questions about their 272 children (87% response rate based on site visits; 67% on invitations sent). When parents were asked about their hope after the diagnosis, the main themes invoked by parents were the following: meet their child alive (80% of parents with a prenatal diagnosis), spend some time as a family (72%), bring their child home (52%), and give their child a good life (66%). Parents wanted to give them a chance, but also reported their fears were medical complexity, pain and/or life in the hospital (61%). Healthcare providers recommended comfort care at birth to all parents. Life-sustaining interventions "as for any other child" was chosen as a plan of care by 25% of parents. Of the 216 children with full trisomy, 69% were discharged home after birth and 40% lived >1 y. The presence of a prenatal diagnosis was the strongest independent factor negatively associated with longevity: 36% of children with a prenatal diagnosis lived <24 hr and 47% were discharged home compared to 1% and 87%, respectively for children with a postnatal diagnosis (P < 0.01). Male gender, low-birth weight, and cardiac and/or cerebral anomaly were also associated with decreased survival (P < 0.05). After a prenatal diagnosis, palliative care at birth consisted of limited interventions, whereas after a postnatal diagnosis (median age of 6 days) it consisted of various interventions, including oxygen, ventilation, tube feeding and intravenous fluids, complicating the analysis. In conclusion, the goals of parents of children with trisomy 13 or 18 were to meet their child, be discharged home and be a family. Having a postnatal diagnosis was the independent factor most associated with these goals. Children with a postnatal diagnosis were treated "as any other children" until the diagnosis, which may give them a survival advantage, independent of palliative care. Rigorous transparency regarding specific interventions and outcomes may help personalize care for these children.
Janvier A
American Journal Of Medical Genetics Part C: Seminars In Medical Genetics
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: 10.1002/ajmg.c.31526
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
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).
http://dx.doi.org/10.12968/ijpn.2016.22.8.388
Delivery Room Deaths Of Extremely Preterm Babies: An Observational Study
Management; Epipage-2; Decision Making; Weeks Gestation; Palliative Care; Perspectives; Birth; Challenge; Infant; Delivery Rooms; Perinatal Palliative Care; Extreme Prematurity; Comfort Care; Death; Pediatrics
Palliative Care; Comfort Care; Delivery Room; Dying; Extreme Prematurity
OBJECTIVE:
Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual management of these dying babies. The objective of this study was to describe the clinical course and management of neonates born between 22 and 26 weeks of gestation who died in the DR in France.
DESIGN, SETTING, PATIENTS:
Prospective study including neonates, who were liveborn between 22+0 and 26+6 weeks of gestation and died in the DR in 2011, among infants included in the EPIPAGE-2 study at the 18 centres participating in this substudy of extremely preterm neonates. Data were collected by a questionnaire completed by the professional caring for each baby.
RESULTS:
The study included 73 children, with a median (IQR) gestational age of 24 (23-24) weeks. Median (IQR) duration of life was 53 (20-82) min. All but one were both wrapped and warmed. Pain was assessed for 72%, although without using any scale. Gasping was described for 66%. Comfort medications were administered to 35 children (50%), significantly more frequently to babies with gasping (p=0.001). Mother-child contact was reported for 78%, and psychological support offered to parents of 92%.
CONCLUSIONS:
Non-pharmacological comfort care and parental support were routinely given. Comfort medication was given much more frequently than previously reported in other DRs. These data should encourage work on the indications for comfort medication and the interpretation of gasping.
X Durrmeyer
Archives Of Disease In Childhood. Fetal And Neonatal Edition
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-2016-310718
Community-based Pediatric Palliative Care For Health Related Quality Of Life, Hospital Utilization And Costs Lessons Learned From A Pilot Study
Medical Complexity; Health Related Quality Of Life; Generic Core Scales; Impact; Hospital Utilization; Pilot Study; Pediatric Palliative Care; Reliability; Health Policy & Services; Illness; Cost-effectiveness; Home; Validity; Vulnerable Children; Pedsql(tm); Chronic Disease; United States; Health Care Sciences & Services
Chronic Disease; Cost-effectiveness; Health Related Quality Of Life; Hospital Utilization; Pediatric Palliative Care; Pilot Study
BACKGROUND:
Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care (CBPPC) provides a holistic approach to patient care that can improve their quality of life and lead to reduced costs of hospital care. This study's purpose was to analyze and report unpublished evaluation study results from 2007 that demonstrate the potential for CBPPC on Health Related Quality of Life (HRQoL) and hospital utilization and costs in light of the increasing national focus on the care of children with complex-medical conditions, including the Affordable Care Act's emphasis on patient-centered outcomes.
METHODS:
A multi-method research design used primary data collected from caregivers to determine the Program's potential impact on HRQoL, and administrative data to assess the Program's potential impact on hospital utilization and costs. Caregivers (n=53) of children enrolled in the Northeast Florida CBPPC program (Community PedsCare) through the years 2002-2007 were recruited for the Health Related Quality of Life (HRQoL) study. Children (n=48) enrolled in the Program through years 2000-2006 were included in the utilization and cost study.
RESULTS:
HRQoL was generally high, and hospital charges per child declined by $1203 for total hospital services (p=.34) and $1047 for diagnostic charges per quarter (p=0.13). Hospital length of stay decreased from 2.92 days per quarter to 1.22 days per quarter (p<.05).
CONCLUSION:
The decrease in hospital utilization and costs and the high HRQoL results indicate that CBPPC has the potential to influence important outcomes for the quality of care available for children with complex-medical conditions and their caregivers.
J Goldhagen
Bmc Palliative 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).
DOI: 10.1186/s12904-016-0138-z
Children's Experiences Of Epilepsy: A Systematic Review Of Qualitative Studies
Systematic Review; Epilepsy; Pediatrics; Qualitative Research; Children & Youth; Quality Of Life
CONTEXT:
Epilepsy is a common and severe neurologic disease associated with increased mortality, seizure-related injury, and adverse psychological and quality-of-life outcomes.
OBJECTIVE:
To describe the perspectives of children and adolescents with epilepsy.
DATA SOURCES:
Medline, Embase, PsycINFO, and CINAHL from inception to August 2015.
STUDY SELECTION:
Qualitative studies on children's experiences of epilepsy.
DATA EXTRACTION:
Results from primary studies. We used thematic synthesis to analyze the findings.
RESULTS:
Forty-three articles involving 951 participants aged 3 to 21 years across 21 countries were included. We identified 6 themes: loss of bodily control (being overtaken, susceptibility to physical harm, fragility of the brain, alertness to mortality, incapacitating fatigue), loss of privacy (declarative disease, humiliating involuntary function, unwanted special attention, social embarrassment of medicine-taking), inescapable inferiority and discrimination (vulnerability to prejudice, inability to achieve academically, consciousness of abnormality, parental shame, limiting social freedom), therapeutic burden and futility (unattainable closure, financial burden, overwhelming life disruption, exhaustion from trialing therapies, insurmountable side effects, awaiting a fabled remission), navigating health care (empowerment through information, valuing empathetic and responsive care, unexpected necessity of transition, fragmented and inconsistent care), and recontextualizing to regain normality (distinguishing disease from identity, taking ownership, gaining perspective and maturity, social and spiritual connectedness).
LIMITATIONS:
Non-English articles were excluded.
CONCLUSIONS:
Children with epilepsy experience vulnerability, disempowerment, and discrimination. Repeated treatment failure can raise doubt about the attainment of remission. Addressing stigma, future independence, and fear of death may improve the overall well-being of children with epilepsy.
L Chong
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).
doi: 10.1542/peds.2016-0658
Best Practice In Provider/Parent Interaction
Pediatrics; Quality; Parents Experiences; Communication; Hospital Staff; Pediatric Palliative Care; Grounded Theory; Social Sciences; Biomedical; Family Perspectives; Qualitative Analysis; Empathy; Medicine; Practice Guidelines; Childs Death; Canada; Social Sciences; Interdisciplinary; Patient-provider; Reflection; Information Science & Library Science; Palliative Care; Relationships; Best Practice
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.
Davies B; Steele R; Krueger G; Albersheim S; Baird J; Bifirie M; Cadell S; Doane G; Garga D; Siden H; Strahlendorf C; Zhao Y
Qualitative Health Research
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).
<a href="https://doi.org/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">10.1177/1049732316664712</a>
Animal-assisted Therapy In Pediatric Palliative Care
Alternative Therapies; Chronic Heart-failure; Psychiatric-patients Pediatrics; Animal-assisted Therapy; Hospitalized Children; Pet-therapy; Evidence-based Practice; Dogs; Complementary; Suffering; Intervention; Nursing; Companion Animals; Anxieties; Palliative Care; Cancer-patients
Animal-assisted Therapy; Pediatrics; Palliative Care; Interventions; Suffering; Evidence-based Practice
Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promise in decreasing suffering of children receiving palliative care services, more work is needed to validate evidence to support implementation of animal-assisted therapy with this vulnerable population.
M J Gilmer
Nursing Clinics Of North America
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).
<a href="http://dx.doi.org/10.1016/j.cnur.2016.05.007" target="_blank" rel="noreferrer">http://dx.doi.org/10.1016/j.cnur.2016.05.007</a>