Survival, short-term morbidity of extremely low gestational age infants and their predictors
Infant; sepsis; cohort analysis; controlled study; female; human; male; retrospective study; perception; palliative therapy; Pregnancy; stillbirth; gender; necrotizing enterocolitis; clinical article; gestational age; neonatal intensive care unit; prevalence; infant; conference abstract; birth weight; corticosteroid; length of stay; mortality risk; Gestational Age; brain hemorrhage; regression analysis; univariate analysis; survival prediction; encephalomalacia; morbidity; lung dysplasia; probability; retrolental fibroplasia
BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide accurate antenatal counseling. <br/>OBJECTIVE(S): To determine the survival and morbidities of ELGA infants in our region stratified by gestational age. DESIGN/METHODS: We performed a retrospective cohort study of infants born at <26 weeks gestational age who received intensive care at two level III Neonatal Intensive Care Units between January 1st 2014 and December 31st 2017. We excluded stillbirths and infants who received only palliative care from birth. Outcomes included survival to discharge home (or transfer to another center), length of admission, and the following short-term morbidities: intraventricular hemorrhage (IVH) grade III - IV, periventricular leukomalacia (PVL), bronchopulmonary dysplasia (BPD), necrotizing enterocolitis (NEC) Bell's Stage >=2, late-onset sepsis, and retinopathy of prematurity (ROP) requiring treatment. A multivariable regression analysis was performed to analyze three factors identified as significant (p<.05) on univariate analysis. <br/>RESULT(S): 117 infants were included: 8 infants at 22 weeks, 20 at 23 weeks, 38 at 24 weeks, and 51 at 25 weeks. The rates of survival were 37.5%, 50.0%, 68.4%, and 76.5% at 22, 23, 24, and 25 weeks, respectively. The probability of survival was similar for infants born at 22 and 23 weeks GA and significantly lower than for infants born at 24 and 25 weeks (fig.1). The mean (+/-SD) length of stay in the NICU was 114.6 +/- 33.7 days. The overall prevalence of short-term morbidities was 25.9% for IVH grade III - IV, 5.4% for PVL, 89.9% for BPD, 16.1% for NEC, 40.0% for late-onset sepsis, and 19.3% for ROP requiring treatment. Only 2.7% of infants who survived >=36 weeks (post-menstrual age) had no short-term morbidities. The multivariable regression analysis demonstrated: an increased risk of mortality for every 100g decrease in birth weight (OR=1.97; 95% CI: 1.40 - 1.98; p =.02), an increased risk of mortality for an incomplete course of antenatal corticosteroids (OR=1.58; 95% CI: 1.2 - 1.78; p =.008), and no effect of gender on mortality over time (OR=1.38; 95% CI: 0.8 - 1.68; p=.15). <br/>CONCLUSION(S): ELGA infants from our region faced similarly high rates of mortality and major short-term morbidity compared to other Canadian centers. Infants born at 22 and 23 weeks experienced similar survival trajectories, which should be further explored as it may influence clinical perceptions of viability at 22 weeks. (Figure Presented).
Kis H; Lemyre B; Radonjic A; Feberova J
Paediatrics and Child Health
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz066.129</a>
Family-Centered Culture Care: Touched by an Angel
ethics; mental stress; morality; psychology; religion; attitude to death; child; cultural anthropology; empathy; ethnology; family nursing; Hinduism; human; human relation; Impatiens; infant; newborn; nursing staff; Touch; treatment refusal
An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person's worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family's collective Indian Hindu worldview and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses' well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society's views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents' right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm.
Hernandez JA
Journal of Clinical Ethics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
We would have missed out so much had we terminated': What fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome.
Humans; Child; Male; Adult; Qualitative Research; *Health Knowledge, Attitudes, Practice; *Choice Behavior; *Fathers; *Father-Child Relations; *Down Syndrome/di [Diagnosis]; *Noninvasive Prenatal Testing
Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the availability of NIPT. Thematic network analysis revealed that although fathers appreciated an early diagnosis with NIPT, they saw the test as being a predetermined pathway to termination. Fathers felt that expectation to terminate reflects negative societal attitudes towards those with Down syndrome and disability, fearing that NIPT may become a form of eugenics. Fathers retrospectively contrasted these attitudes with the actual reality of raising their children with Down syndrome, which they described as bringing joy to their lives. Findings suggest that although fathers valued NIPT as an information-giving tool that allowed autonomous parental choices about the pregnancy, they believe that it should be accompanied by balanced information about the reality of raising a child with Down syndrome.
How, Bethea; Smidt, Andy; Wilson, Nathan J; Barton, Rebecca; Valentin, Chelsea
Journal of Intellectual Disabilities
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1744629518787606" target="_blank" rel="noreferrer noopener">10.1177/1744629518787606</a>
Being a dad to a child with Down's syndrome: Overcoming the challenges to adjustment.
Humans; Child; Child, Preschool; Male; Infant; Middle Aged; Adult; Qualitative Research; Grounded Theory; *Fathers/px [Psychology]; *Down Syndrome/nu [Nursing]
BACKGROUND: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers' experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision., METHOD: Semi-structured interviews were conducted with 15 fathers. Interviews were analysed using Grounded Theory (GT)., RESULTS: Fathers' adjustment appeared to be on a fluid trajectory with three key categories influencing this: "Accommodating the Child," "Adapting the Parental/Spousal Role" and "Adapting Society.", CONCLUSIONS: The accounts uncovered fathers' adjustment trajectory to parenting a child with DS, concluding that despite practical and emotional challenges, fathers employed strategies to achieve positive adjustment. Fathers identified the need for services to recognize their role and involve them in their child's support provision. Implications for clinical practice and future research are discussed. Copyright © 2019 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.
Ridding, Anna; Williams, James
Journal of Applied Research in Intellectual Disabilities
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/jar.12563" target="_blank" rel="noreferrer noopener">10.1111/jar.12563</a>
Organ donation after euthanasia in children: Belgian and Dutch perspectives
Child; child; article; human; palliative therapy; Only Child; ethics; intensive care; euthanasia; organ donor; pediatric surgery
Organ donation after euthanasia has been performed more than 70 times in Belgium and the Netherlands combined (personal communication, Jan Bollen, 2018). These two countries allow for euthanasia in minors as well, while Luxembourg, Colombia and Canada only allow adults to undergo euthanasia. A Dutch guideline on organ donation after euthanasia focuses on mentally competent adults, with a predominance of neurodegenerative diseases.1 The question arises whether organ donation after euthanasia should be possible in children and adolescents, and what are the legal, medical and ethical conditions for the combined procedure.
Bollen JAM; Ten Hoopen R; Van Der Hoeven MAHBM; Shaw D; Brierley J; Ysebaert D; Van Heurn LWE; Van Mook WNKA
Archives of Disease in Childhood
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2018-315560" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-315560</a>
Religious and cultural challenges in paediatrics palliative care: A review of literature
cultural anthropology; palliative therapy; pediatrics; religion; autopsy; caregiver; coping behavior; data base; decision making; human; interpersonal communication; life; organ donor; Palliative Care; review; software; systematic review; terminal care; terminally ill patient
Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children even more challenging due to the various, and at times, contrasting expectations from the families and the healthcare providers. Objective(s): This article aimed to discover the challenges of paediatric palliative care delivery in the context of culture and religion. Method(s): A systematic review was conducted through an online search of three databases for free open access articles and book chapters published between 2000 and 2018: Medline, Scopus and Google Scholar. Search key terms included: culture, custom, spiritual, ethnic, or religion [AND] end-of-life, palliative care, cancer, hospice, [AND] children or paediatrics. Result(s): Thirty-two (32) articles met the eligibility criteria. Out of these, five distinct themes emerged on the basis of implications for paediatrics palliative care. These include the (i) role of religion and culture in decision-making, (ii) the involvement of clerics towards the end-of-life, (iii) specific communication with the children and their caregivers about imminent death, (iv) the acceptance of autopsy and organ donation, and (v) spiritual coping strategies. Discussion(s): This review paper provided an insight into the impact of religion and topographical culture to the paediatrics end-of-life care. Cultural and religious traditions are dynamic and cannot be generalized to all families, hence a guided framework is recommended for clinicians working in diverse ethnic population in dealing with culturally sensitive, end-of-life care.Copyright © 2019 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
Khalid K; Ku Md Saad S; Abd Ghani NA; Mohamed Abdul Kadher AN
Journal of Pediatric Hematology/Oncology
2019
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<a href="http://doi.org/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.phoj.2019.11.001</a>
Timing of palliative consultation for children during a fatal illness
childhood disease; palliative therapy; African American; article; cardiovascular disease; Caucasian; Child; cohort analysis; female; human; insurance; length of stay; major clinical study; male; Only Child; outcome assessment; private health insurance; Referral and Consultation; retrospective study
Abstract Background: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after >75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents. Methods: We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care. Results: The analysis included 180 patients (median age at diagnosis <1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race. Conclusions: In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care.
Rossfeld ZM; Miller R; Fosselman DD; Ketner AR; Tumin D; Tobias JD; Humphrey L
Hospital Pediatrics
2019
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<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2018-0169</a>
Caregiver Decision-Making for Terminally Ill Children: A Qualitative Study
decision-making; end of life; goals of care; parental coping; pediatrics; terminally ill children
INTRODUCTION: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children. METHODS: Semistructured interviews were conducted among caregivers of terminally ill children. Participation was voluntary and confidential. The institutional review board approved the protocol. Transcripts were read and coded by 2 authors using inductive, concurrent analysis to reach thematic saturation and generate common themes. RESULTS: Nine interviews were completed, discussing the care of 10 children. Caregivers described decision-making as impacted by their relationships with medical providers of 2 distinct types-trusting and nontrusting. Trusting relationships were notable for a longitudinal relationship with medical staff who empowered caregivers and treated the patient primarily as a child. Nontrusting relationships were noted when the medical team objectified their child as a "patient" and appeared to withhold information. Also, nontrusting relationships occurred when caregivers felt frustration with needing to educate health-care providers about their child's illness. CONCLUSION: Decision-making by caregivers of terminally ill children is complex, and supporting families in this process is a critical role of all medical providers. A trusting relationship with medical team members was identified as an effective tool for well-supported decision-making, which can potentially alleviate the suffering of the child and distress of the caregivers during this emotionally charged time.
Pinto TE; Doolittle B
Journal of Palliative Care
2019
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<a href="http://doi.org/10.1177/0825859719885947" target="_blank" rel="noreferrer noopener">10.1177/0825859719885947</a>
Multimorbidity in Children and Youth Across the Life-course (MY LIFE): protocol of a Canadian prospective study
adolescent; chronic disease; longitudinal study; mental disorder; multimorbidity; trajectories
Introduction Multimorbidity, the co-occurrence of a chronic physical condition and mental disorder, affects a substantial number of children and youth and can lead to compromised quality of life, hardship for families, and an increased burden on the healthcare system. We are conducting a study to document the course of mental disorder in children and youth diagnosed with a chronic physical condition; identify predictors of child and youth multimorbidity; examine whether the effects of these predictors are moderated by relevant psychosocial and biological factors; explore potential inflammatory and stress biomarkers that mediate the onset of child and youth multimorbidity; and, assess whether multimorbidity in children and youth alters patterns of mental health service use. Methods and analysis Multimorbidity in Children and Youth Across the Life-course (MY LIFE) is a prospective study. Two hundred and fifty children and youth aged 2–16 years diagnosed with a chronic physical condition along with one parent will be recruited from the outpatient clinics at a paediatric tertiary care centre. Data will be collected using a multi-informant, multimethod design at four time-points (at recruitment, and at 6, 12 and 24 months postrecruitment). Parents will provide reports for all children/youth. In addition, youth ≥10 years will self-report. Mental disorder will be assessed using structured interviews. On completion of data collection, participant-reported data will be linked to provincial health records to identify mental health services use. Multilevel analyses (survival, proportional hazard, structural equation modelling) will be used to address MY LIFE objectives. Ethics and dissemination This study has been approved by the University of Waterloo Human Research Ethics Board and the Hamilton Integrated Research Ethics Board. Findings will be disseminated to key stakeholders using a number of outlets (peer-reviewed publications and conferences, lay informational pamphlets, social media).
Ferro MA; Lipman EL; Lieshout RJV; Gorter JW; Shanahan L; Boyle M; Georgiades K; Timmons B
BMJ Open
2019
<a href="http://doi.org/10.1136/bmjopen-2019-034544" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-034544</a>
Bereaved Parents' Perceptions of Infant Suffering in the NICU
Neonatal Intensive Care Units; Newborn Infant; Infant; intensive care; Mothers; Neonatal; NICU; Parents; Perception; suffering
CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering. OBJECTIVES: To examine bereaved parents' perceptions of infant suffering in the NICU. METHODS: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death. RESULTS: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making. CONCLUSION: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.
Fortney CA; Baughcum AE; Moscato EL; Winning AM; Keim MC; Gerhardt CA
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.007</a>
The Long Road to Farewell: The Needs of Families With Dying Children
cancer; pediatric palliative care; bereaved parents; bereavement; trauma
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.
Cacciatore J; Thieleman K; Lieber AS; Blood C; Goldman R
Omega
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222817697418" target="_blank" rel="noreferrer noopener">10.1177/0030222817697418</a>
Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
Female; Fetal mortality; hospice; Infant; mothers; Newborn; palliative care; perinatal; Perinatal Care organization & administration; prenatal; Prenatal Diagnosis; Retrospective Studies
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.
Kamrath HJ; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J
Journal of Palliative Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0303</a>
Parents' Perspectives on Hospital Care for Children and Adolescents with Life-Limiting Conditions: A Grounded Theory Analysis of Narrative Interviews
pediatrics; palliative care; hospitals; parents; qualitative research; ambulatory care
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance. Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care. Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach. Setting/Subjects: We interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany. Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time. Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.
Engler J; Gruber D; Engler F; Hach M; Seipp H; Kuss K; Gerlach FM; Ulrich LR; Erler A
Journal of Palliative Medicine
2019
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<a href="http://doi.org/10.1089/jpm.2019.0245" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0245</a>
Experience of Perinatal Death From the Father's Perspective
Adolescent; Colombia; Emotions; Fathers; Grief; Infant; Male; Middle Aged; Newborn; Perinatal Death; Qualitative Research; Young Adult
BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of perinatal death in a sample of fathers from northeastern Colombia. METHODS: Using purposive and snowball sampling approaches, we identified 15 participants from northeastern Colombia who agreed to participate. We used a descriptive phenomenological design. Data were collected through in-depth, semistructured interviews. RESULTS: Men suffer in solitude and hide their emotions as they feel the need to be the main supporters of their partners. Three major themes emerged: experience of loss, coming to terms with an irreparable loss, and overcoming the loss. DISCUSSION: While women are receiving care, health staff may neglect or forget men. Men suffer alone while seeking ways of attunement with their partners' emotions to support them during the grieving process. Fathers can overcome and adjust to the loss when they transcend it and find new meaning. Men felt neglected and marginalized at hospitals while their partners were receiving treatment. Health professionals should recognize and acknowledge the pain of fathers who face perinatal death and include them as much as possible in the standard of care. The results identify opportunities for healthcare providers in clinical and outpatient settings to acknowledge the importance of men within the context of pregnancy and to learn about their pain and suffering when they face a perinatal death.
Lizcano PLDM; Moreno Fergusson ME; Palacios AM
Nursing Research
2019
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<a href="http://doi.org/10.1097/nnr.0000000000000369" target="_blank" rel="noreferrer noopener">10.1097/nnr.0000000000000369</a>
Experience of Parents Who Have Suffered a Perinatal Death in Two Spanish Hospitals: A Qualitative Study
Qualitative research; Stillbirth; Perinatal death; Perinatal grief
BACKGROUND: Perinatal grief is a process that affects families in biological, psychological, social and spiritual terms. It is estimated that every year there are 2.7 million perinatal deaths worldwide and 4.43 deaths for every 1000 births in Spain. The aim of this study is to describe and understand the experiences and perceptions of parents who have suffered a perinatal death. METHODS: A qualitative study based on Gadamer's hermeneutic phenomenology. The study was conducted in two hospitals in the South of Spain. Thirteen mothers and eight fathers who had suffered a perinatal death in the 5 years prior to the study participated in this study. In-depth interviews were carried out for data collection. Inductive analysis was used to find themes based on the data. RESULTS: Eight sub-themes emerged, and they were grouped into three main themes: 'Perceiving the threat and anticipating the baby's death: "Something is going wrong in my pregnancy"'; 'Emotional outpouring: the shock of losing a baby and the pain of giving birth to a stillborn baby'; "We have had a baby": The need to give an identity to the baby and legitimise grief'. CONCLUSION: The grief suffered after a perinatal death begins with the anticipation of the death, which relates to the mother's medical history, symptoms and premonitions. The confirmation of the death leads to emotional shock, characterised by pain and suffering. The chance to take part in mourning rituals and give the baby the identity of a deceased baby may help in the grieving and bereavement process. Having empathy for the parents and notifying them of the death straightaway can help ease the pain. Midwives can help in the grieving process by facilitating the farewell rituals, accompanying the family, helping in honouring the memory of the baby, and supporting parents in giving the deceased infant an identity that makes them a family member.
Camacho-Avila M; Fernandez-Sola C; Jimenez-Lopez FR; Granero-Molina J; Fernandez-Medina IM; Martinez-Artero L; Hernandez-Padilla JM
BMC Pregnancy and Childbirth
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12884-019-2666-z" target="_blank" rel="noreferrer noopener">10.1186/s12884-019-2666-z</a>
Priorities for Nutrition Research in Pediatric Critical Care
child; Child; Child Nutrition Disorders/prevention & control/*therapy; Child Nutritional Physiological Phenomena; Children; Consensus; Critical Care/*methods; Critical Illness; Delphi Technique; enteral nutrition; Humans; Intensive Care; Intensive care units (paediatric); Internationality; Nutritional Support/*methods; parenteral nutrition; Pediatric; research
BACKGROUND: Widespread variation exists in pediatric critical care nutrition practices, largely because of the scarcity of evidence to guide best practice recommendations. OBJECTIVE: The objective of this paper was to develop a list of topics to be prioritized for nutrition research in pediatric critical care in the next 10 years. METHODS: A modified 3-round Delphi process was undertaken by a newly established multidisciplinary group comprising 11 international researchers in the field of pediatric critical care nutrition. Items were ranked on a 5-point Likert scale. RESULTS: Forty-five research topics (with a mean priority score >3(0-5) were identified within the following 10 domains: the pathophysiology and impact of malnutrition in critical illness; nutrition assessment: nutrition risk assessment and biomarkers; accurate assessment of energy requirements in all phases of critical illness; the role of protein intake; the role of pharmaco-nutrition; effective and safe delivery of enteral nutrition; enteral feeding intolerance: assessment and management; the role of parenteral nutrition; the impact of nutrition status and nutrition therapies on long-term patient outcomes; and nutrition therapies for specific populations. Ten top research topics (that received a mean score >4(0-5) were identified as the highest priority for research. CONCLUSIONS: This paper has identified important consensus-derived priorities for clinical research in pediatric critical care nutrition. Future studies should determine topics that are a priority for patients and parents. Research funding should target these priority areas and promote an international collaborative approach to research in this field, with a focus on improving relevant patient outcomes.
Tume L N; Valla F V; Floh A A; Goday P; Jotterand Chaparro C; Larsen B; Lee J H; Moreno Y M F; Pathan N; Verbruggen S; Mehta N M
Journal of Parenteral and Enteral Nutrition
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/jpen.1498" target="_blank" rel="noreferrer noopener">10.1002/jpen.1498</a>
A Time to Live and a Time to Die: Heterotopian Spatialities and Temporalities in a Pediatric Palliative Care Team
Anthropology; Attitude to Death; child; communication; death; humans; palliative care; Parents/psychology; patient care team; pediatric hospitals; pediatrics; spatial analysis; time factors; uncertainty
The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and space. In this paper, we report on a long-term ethnographic study of a Pediatric Palliative Care Team (PPCT). Using the concepts of spatiality and temporality; Deleuze's concepts of smooth and striated spaces; Innis's concepts of space and time biases; Foucault's concept of heterotopian space-places with multiple layers of meaning; and a related concept of heterokairoi-moments in time with multiple possibilities-we consider how the PPCT constructs and reconstructs meaning in the midst of chaos, ethical dilemmas, and heartbreaking choices.
Davis C S; Snider M J; King L; Shukraft A; Sonda J D; Hicks L; Irvin L
Health Communication
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/10410236.2018.1443262" target="_blank" rel="noreferrer noopener">10.1080/10410236.2018.1443262</a>
Palliative care and paediatric cardiology: current evidence and future directions
Humans; Child; Palliative Care/td [Trends]; Cardiology/td [Trends]; Pediatrics/td [Trends]
Although outcomes for children with heart disease have improved substantially over the past several decades, heart disease remains one of the leading causes of paediatric mortality. For children who progress to advanced heart disease, disease morbidity is high, with many children requiring multiple surgical interventions and long-term intensive care hospitalisations. Care for children with advanced heart disease requires a multidisciplinary approach, and opportunities for earlier integration of palliative care are being explored. This Viewpoint summarises the relevant literature over the past decade. We also identify gaps in parent and provider understanding of prognosis and communication, propose indications for palliative care consultation in paediatric advanced heart disease, and summarise attitudes and perceived barriers to palliative care consultation. Areas for additional research that we identify include paediatric cardiologist education, parental distress, socioeconomic disparities, and patient-reported outcomes. Interdisciplinary clinical and research efforts are required to further advance the field and improve integration of palliative care in the care of children with heart disease. Copyright © 2019 Elsevier Ltd. All rights reserved.
Morell E; Moynihan K; Wolfe J; Blume E D
The Lancet Child & adolescent health
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/S2352-4642(19)30121-X" target="_blank" rel="noreferrer noopener">10.1016/S2352-4642(19)30121-X</a>
Ethics and patient and public involvement with children and young people
Humans; Adolescent; Child; Female; Male; Middle Aged; Adult; Guidelines as Topic; Patient Participation/px [Psychology]; United Kingdom; Research Personnel/px [Psychology]; Health Services Research/es [Ethics]; Health Services Research/st [Standards]; Patient Participation/sn [Statistics & Numerical Data]; Research Design/st [Standards]; Research Personnel/es [Ethics]; Research Personnel/st [Standards]
Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work. Copyright © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2019. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Mitchell S J; Slowther A; Coad J; Akhtar S; Hyde E; Khan D; Dale J
Archives of Disease in Childhood - Education and Practice
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2017-313480" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313480</a>
Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
Infant; Humans; Female; palliative care; hospice; Retrospective Studies; Adult; Palliative Care/*organization & administration; perinatal; Prenatal Diagnosis; Mothers/*psychology; Newborn; Patient Care Planning/*organization & administration; prenatal; Fetal Diseases/diagnosis/*mortality; Perinatal Care/*organization & administration
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.
Kamrath H J; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J
Journal of Palliative Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0303</a>
The impact of ethical and legal decision-making in neonatal intensive care on psychosocial wellbeing of the health care professionals the overview of the HUNIC Project study design
ethics; social support; neonatal intensive care; end-of-life decision making; job satisfaction; neonatologists; health behavior; medical personnel; study design; well-being of health workers
The paper introduces the multidisciplinary HUNIC project, which is partly based on the EURONIC study. The objective of the HUNIC study is to assess the attitude and opinion of healthcare providers in Hungarian NICUs about end-of-life decisions, the decision-making process, parental communication, to analyse the differences between HUNIC results in 2015-2016 and EURONIC results in 1996-1997, to compare the attitudes of neonatologists and neonatal nurses, and to identify factors that might affect those attitudes and opinions. A further important objective of the HUNIC study is to compare these attitudes and opinions of neonatal care providers with their personal work experience, educational background in the bioethics field, social support, work and life satisfaction, burnout, health behaviour and psychosocial health. This paper aims to present the methodology of an extensive, complex, and multidisciplinary survey (HUNIC) within the framework of the EURONIC. Copyright © 2019 Semmelweis University Institute of Mental Health, Budapest
Feith H J; Kiss Z S; Pilling J; Kovacs A; Szabo M; Cuttini M; Berbik I; Gezsi A; Gradvohl E
European Journal of Mental Health
2019
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<a href="http://doi.org/10.5708/EJMH.14.2019.2.6" target="_blank" rel="noreferrer noopener">10.5708/EJMH.14.2019.2.6</a>
Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning
Humans; Adolescent; Child; Female; Male; Middle Aged; palliative care; Attitude to Death; Preschool; Adult; Attitude to Health; Spirituality; Practice Guidelines as Topic; Pediatrics/*standards; Advance Care Planning/*standards; United Kingdom; Family/*psychology; paediatric practice; Palliative Care/*psychology/*standards
In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound importance to children and their families. We overlook their search for wholeness in the absence of cure and fall short of offering truly holistic care. This paper explores how developments in advance care planning and related documentation are addressing these issues. Since children's spirituality is elusive and rarely explored in practice, it aims to clarify our understanding of it with a variety of examples and contains suggestions for hearing the voice of the child amid the needs of parents and professionals.
Clayton M; Aldridge J
Archives of Disease in Childhood - Education and Practice
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2017-314525" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314525</a>
The Long Road to Farewell: The Needs of Families With Dying Children
cancer; pediatric palliative care; bereaved parents; bereavement; trauma
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.
Cacciatore J; Thieleman K; Lieber A S; Blood C; Goldman R
Omega
2019
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<a href="http://doi.org/10.1177/0030222817697418" target="_blank" rel="noreferrer noopener">10.1177/0030222817697418</a>
Long-term nurse-parent relationships in paediatric palliative care: a narrative literature review
Humans; Professional-Family Relations; Parents; Trust; Object Attachment; Nurse-Patient Relations; Hospice and Palliative Care Nursing; nurses; Professionalism
BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality, provide emotional support and can influence how parents manage their role in the face of uncertainty., AIM: To present a narrative literature review of long-term relationships between children's nurses and parents in PPC settings., METHODS: Six databases (CINAHL, PsycINFO, ASSIA, Scopus, Medline and BNI) were searched, identifying 35 articles. A grey literature search produced seven additional relevant items., FINDINGS: Four themes were identified: bonds; attachments and trust; sharing the journey; going the extra mile; and boundaries and integrity. All themes revealed an element of tension between closeness and professionalism., CONCLUSION: Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses could positively influence pre- and post-registration nurse education.
Brimble M J; Anstey S; Davies J
International journal of palliative nursing
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.12968/ijpn.2019.25.11.542" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2019.25.11.542</a>
Challenges primary care providers face when caring for children with medical complexity
children; children with medical complexity; CMC; medical complexity; PCP; primary care providers
Background and Objective(s): Children with medical complexity (CMC) have multiple chronic health problems resulting in functional limitations and high resource utilization. Providing primary care for CMC can be time consuming and costly. This study aims to identify the perceived barriers that pose challenges for primary care providers (PCPs) when caring for CMC in Kansas (KS) and Missouri (MO). Study Design: Cross-sectional study. Study Participants and Settings: A survey was disseminated to PCPs in MO and KS through Children's Mercy Hospital, The University of Kansas Hospital, the Office of Rural Health Education, and the MO and KS chapters of the American Academy of Pediatrics. The voluntary-response sample included 115 PCPs. CMC clinic providers were excluded. Material(s) and Method(s): A onetime cross-sectional REDCap survey adapted from previously published surveys was disseminated via email. The data collected were self-identified and categorical. Statistical analysis was performed using a twotailed ANOVA with a p value of 0.05. Result(s): The top barrier to providing care for CMC was insufficient time in clinic (20%) while lack of understanding billing was perceived as not at all a barrier (38%). PCPs were least prepared to handle tracheostomy problems (39%). Access to comprehensive care plans (27%), more time in clinic (21%), and education offerings with continuing education credit (18%) were rated as most helpful to improve ability to care for CMC. Lack of support services was a significant barrier for non-residents compared to residents (45.6% vs. 14.3%, p<0.01) and for PCPs in rural areas compared to providers in metropolitan settings (64.3% vs 29.2%, p=0.015). Metropolitan providers identified insufficient time in clinic to care for patient's needs to be a significant barrier compared to providers in rural areas (65.2% vs 15.4%, p=0.0014). Residents reported they were significantly less prepared to transition a patient from adolescent to adult care (91.7% vs. 48.5%), provide routine healthcare (58.3% vs. 12.3%) and write home health orders (97.2% vs. 59.7%) compared to non-residents (p<0.001). Metropolitan providers felt unprepared to provide palliative care to patients compared to providers in rural areas (86.4% vs 35.7%, p=0.0001). Residents and metropolitan providers both ranked simulation as a more helpful education modality compared with non-residents and rural providers (p<0.05). Conclusions or Significance: Perceived barriers, level of preparedness, and preferred education intervention while caring for CMC varied based on training and practice location. These factors must be considered when developing strategies for education and improving care delivery for CMC.
Savolt T; Smith T; Goodwin E; Kennedy M
Developmental Medicine and Child Neurology
2019
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<a href="http://doi.org/10.1111/dmcn.14354" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14354</a>
Good death term in the aspect of paediatric palliative care nursing
good death; nursing; pediatric palliative care
Introduction: When faced with serious illness and the possibility of a child's death, a family experiences many uncertainties and traumatic experiences. The expected normal order of life is significantly disrupted, and a diagnosis of a life-threatening or life-limiting illness can greatly alter family functioning and overall well-being. The importance of addressing a child and their family members' physical, emotional, cultural, spiritual, and psychosocial needs has been well documented in pediatric palliative care. Discussion(s): Death is one of the main threats for a human being. It is usually seen as an adult or geriatric populations' problem, so the idea of "children and babies may die, too" is mostly avoided or prohibited from talking by societies, families, health-care professionals, etc. And all of these children and families suffer from during end of life or/and bereavement process. To stop these nurses and other health-care professionals are important to deliver care in the aspect of good death. Good death or die with dignity for child and their families contain 'free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural and ethical standards in terminal illnesses'. In other words, freedom from distressing symptoms, dying in a favorite place, good relationships with family members and medical staff, a feeling that the dying person's life is complete, maintained dignity, preparation for death were also other parts of a good death. To ensure good end for pediatric palliative care, nurses should take advanced nursing practices and responsibilities, but this is not simple because this aspect of nursing is not given by education, neither undergraduate nor post-graduate education. Nursing education at the undergraduate level is mainly based on the medical model. Therefore, while students are receiving detailed information about the protection, prevention, treatment, and rehabilitation of diseases, and they have a limited education on the end of life. As a result, the student nurses and nurses do not want to care for the individual who has a terminal illness, do not feel ready for them, feel a sense of inadequacy, and the care of the patient and his/her family is negatively affected. So education should be planned end of life care, a good death, and palliative care to stop possible negative effects.
Ozkan S; Tas Arslan F
Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2019.1694205</a>
Characteristics and Outcomes of Critical Illness in Children With Feeding and Respiratory Technology Dependence
Adolescent; Artificial/adverse effects/*statistics & numerical data; Biomedical Technology; Case-Control Studies; Child; Critical Care/*methods; Critical Illness/therapy; Health Care/*statistics & numerical data; Humans; Infant; Intensive Care Units; Newborn; Outcome Assessment; Parenteral Nutrition; Pediatric/statistics & numerical data; Preschool; Prospective Studies; Respiration; Severity of Illness Index; Total/adverse effects/*statistics & numerical data
OBJECTIVES: Children with dependence on respiratory or feeding technologies are frequently admitted to the PICU, but little is known about their characteristics or outcomes. We hypothesized that they are at increased risk of critical illness-related morbidity and mortality compared with children without technology dependence. DESIGN: Secondary analysis of prospective, probability-sampled cohort study of children from birth to 18 years old. Demographic and clinical characteristics were assessed. Outcomes included death, survival with new morbidity, intact survival, and survival with functional status improvement. SETTING: General and cardiovascular PICUs at seven participating children's hospitals as part of the Trichotomous Outcome Prediction in Critical Care study. SUBJECTS: Children from birth to 18 years of age as part of the Trichotomous Outcome Prediction in Critical Care study. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Children with technology dependence composed 19.7% (1,989/10,078) of PICU admissions. Compared with those without these forms of technology dependence, these children were younger, received more ICU-specific therapeutics, and were more frequently readmitted to the ICU. Death occurred in 3.7% of technology-dependent patients (n = 74), and new morbidities developed in 4.5% (n = 89). Technology-dependent children who developed new morbidities had higher Pediatric Risk of Mortality scores and received more ICU therapies than those who did not. A total of 3.0% of technology-dependent survivors (n = 57) showed improved functional status at hospital discharge. CONCLUSIONS: Children with feeding and respiratory technology dependence composed approximately 20% of PICU admissions. Their new morbidity rates are similar to those without technology dependence, which contradicts our hypothesis that children with technology dependence would demonstrate worse outcomes. These comparable outcomes, however, were achieved with additional resources, including the use of more ICU therapies and longer lengths of stay. Improvement in functional status was seen in some technology-dependent survivors of critical illness.
Heneghan J A; Reeder R W; Dean J M; Meert K L; Berg R A; Carcillo J; Newth C J L; Dalton H; Tamburro R; Pollack M M
Pediatric Critical Care Medicine
2019
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<a href="http://doi.org/10.1097/pcc.0000000000001868" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000001868</a>
Discussing end-of-life issues in an adolescent with a terminal illness
adolescent; advance care planning; end-of-life; terminal illness
Introduction: Adolescent palliative care is especially challenging because of complex developmental, social, clinical, and legal concerns. In adolescents with life-limiting illnesses, developmental tasks of normal adolescence such as developing an awareness of self and others, gaining selfconfidence, independence, and establishing one's own identity are halted. The difficulty lies in balancing the desire to gain independence while experiencing greater dependence on others as their disease progress. Purpose(s): This review discusses the multi-faceted barriers in discussion of end-of-life care with the adolescent and strategies to optimize this discussions. Case description: This case is about a wheelchair-bound 14-year-old boy with Duchenne's Muscular Dystrophy (DMD), and challenges faced discussing end-of-life issues. His condition was complicated by restrictive lung disease requiring nocturnal Bilevel Positive Airway Pressure (BiPAP) and dilated cardiomyopathy with severely reduced biventricular systolic function. His parents did not want the patient's deteriorating condition to be divulged to him, and he struggled to make sense of his medical experiences. This resulted in non-compliance to medication, fluid restriction, and nocturnal use of BIPAP, exacerbating a vicious circle of admissions for fluid overload due to symptomatic congestive cardiac failure. He had difficulty coming to terms with his illness, felt like a burden to his parents, struggled with frequent nightmares about death, and would wake up in a state of panic. Advanced Care Planning (ACP) with the family was challenging due to parental resistance. Results/Discussion: We reviewed the literature and identified challenges in discussing end-of-life issues with the adolescent. Perspectives from main stakeholders such as the parents, the adolescent, and the medical professionals were evaluated. Key strategies for taking on the end-of-life discussion with the adolescent are as follows: (1) Employing a multidisciplinary team approach for supporting decision-making by dying adolescent, including the physician, nurse, psychologist, social worker, and child life specialist; (2) overcoming parental barriers through physician truthtelling and effective communication, and breaking-down of parental self-defense mechanisms through psychosocial support and pediatric palliative care teams; (3) engaging the adolescent and determining their functional competence and decision-making ability; and (4) integrating truthtelling with modern bioethical principles. Conclusion(s): Our clinical case exemplifies the importance of involving the adolescent in the end-oflife discussion. Early involvement establishes trust between the medical team and the family, whilst providing control and independence as the adolescent's needs are incorporated into the treatment plan. As physicians, the aim is to engage the above strategies together with the multidisciplinary team, preserve opportunities for the adolescent and family to create meaningful legacies, say goodbye to each other, or find spiritual peace in end-of-life care.
Chia S Y
Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2019.1694205</a>
Parents' experiences of feeding, swallowing, and nutrition in children receiving palliative care
children; nutrition; nutritional needs; palliative care; parent experiences; pediatric palliative care
Purpose: Parents caring for children receiving palliative care due to life-threatening illnesses face tremendous stressors, including providing nutrition to their child. Very little is known about this experience or how parents manage nutritional needs amidst the uncertainty of the illness. The purpose of this study was to explore parents' experiences, including strategies employed to cope with stressors and manage the feeding, swallowing, and nutrition of their children. Method(s): A qualitative descriptive design was used. Data was collected from 20 parents and 20 children. The parents (17 women) were aged 25-55 (mean 36). Children ranged from 11 days to 5 years (mean 15 months) with diagnoses including neurological conditions (6), congenital heart malformations (6), mitochondrial disorders (2), prematurity (8), and cancer (1). Data from parents: interviews, field observations, and levels of distress. Data from children was abstracted from their medical records. Analysis is ongoing. Interviews were transcribed and are being coded using open and process coding. Other data is being used to describe the sample and provide context. Result(s): (1) Guilt and grief are prominent for parents with feelings of failure as a parent. Distress levels were high related to the overall experience and the feeding, swallowing, and nutrition issues. (2) Parents cope by normalizing their experiences, taking it day by day, and maintaining optimism. (3) The projected trajectory of the child's illness affected the parents' experiences. (4) Feeding and nutrition management included taking part in providing nutrition in the manner best for the child and finding alternative ways to nurture and bond with the child. Parents relied on support of family, other parents, and online groups. Good interprofessional communication was felt to be key to good care for the child. Conclusions (Including Clinical Relevance): Having a child with a life-threatening illness, affecting the parent's ability to feed the child, is fraught with grief, high levels of distress, and difficulty achieving the parenting role. Over time parents adapt and modify their role. Parents expressed a need for additional support and training to manage their child's nutrition. Health care professionals must take into account the emotional burden that parents experience. Services should be family-centered with support and training for parents.
Pyke H; Norton S; Blaakman S W; Korones D N
Dysphagia
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00455-019-10022-z" target="_blank" rel="noreferrer noopener">10.1007/s00455-019-10022-z</a>
Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit
Adult; Bereavement; Child; child and family wishes; Critical Illness -- Singapore; Death; Female; Grounded theory; Grounded Theory; health personnel attitude; Hospital Mortality; Hospitalized; Humans; Intensive care unit-paediatric; Intensive care units pediatric; Interviews as Topic; Male; Nurse; Parents; Parents/*psychology; Pediatric; Professional-Family Relations; Victoria
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new relationships with healthcare staff. How parents form relationships with staff and how they perceive both their own and the healthcare providers' roles in this early stage of their paediatric intensive care journey is currently unknown. PURPOSE: This paper explores bereaved parents' perceptions of their role and their relationships with healthcare providers when their child is admitted to the intensive care unit, as part of a larger study exploring their experiences when their child dies in intensive care. METHODS: A constructivist grounded theory approach was utilised to recruit 26 bereaved parents from 4 Australian intensive care units. Parents participated in audio-recorded, semi-structured interviews lasting 90-150min. All data were analysed using the constant comparative analysis processes, supported by theoretical memos. RESULTS: Upon admission, parents viewed healthcare providers as experts, both of their child's medical care and of the hospital system. This expertise was welcomed, with the parent-healthcare provider relationship developing around the child's need for medical care. Parents engaged in 2 key behaviours in their relationships with staff: prioritising survival, and learning 'the system'. Within each of these behaviours are several subcategories, including 'Stepping back', 'Accepting restrictions' and 'Deferring to medical advice'. CONCLUSIONS: The relationships between parents and staff shift and change across the child's admission and subsequent death in the paediatric intensive care unit. However, upon admission, this relationship centres around the child's potential survival and their need for medical care, and the parent's recognition of the healthcare staff as experts of both the child's care and the hospital system.
Butler A E; Copnell B; Hall H
Australian Critical Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.aucc.2017.09.004" target="_blank" rel="noreferrer noopener">10.1016/j.aucc.2017.09.004</a>
Bereaved mothers' and fathers' prolonged grief and psychological health 1 to 5 years after loss-A nationwide study
Adaptation; Adult; Attitude to Death; Child; childhood cancer; depression; Depression/psychology; fathers; Fathers/*psychology; Female; Grief; Humans; insomnia; Male; Mental Health/*statistics & numerical data; Middle Aged; Mothers; Mothers/*psychology; Parents/psychology; pediatric oncology; Pgd; Posttraumatic stress; prolonged grief disorder; Psychological
OBJECTIVE: To assess differences in prolonged grief, depression, posttraumatic stress, and sleep disturbances in bereaved parents across years since loss (1-5 years) and by gender and to assess potential interactive effects of time since loss and gender on bereavement outcomes. METHODS: This study examined symptom levels of prolonged grief disorder, depression, posttraumatic stress, and insomnia in bereaved parents. A sample, including 133 mothers and 92 fathers who had lost a child to cancer 1 to 5 years previously, subdivided to five subsamples, one for each year since loss. Analysis of variance (ANOVA) was used to assess differences in symptom levels, related to years since loss, and gender. RESULTS: Regardless of how many years had passed since the loss, symptom levels of prolonged grief, depression, posttraumatic stress symptoms, and insomnia were elevated in all subsamples. Mothers showed higher symptom levels of prolonged grief, depression, and posttraumatic stress than fathers. However, no significant interaction effects were found between years since loss and gender on any of the symptom levels. CONCLUSIONS: Cancer-bereaved mothers and fathers are vulnerable to prolonged grief and psychological symptoms up to 5 years after the death of their child. Findings highlight that bereaved parents may need long-term support, and the results deserve further attention in research and clinical care.
Pohlkamp L; Kreicbergs U; Sveen J
Psycho-Oncology
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pon.5112" target="_blank" rel="noreferrer noopener">10.1002/pon.5112</a>
Patients' priorities in a reminiscence and legacy intervention in palliative care
article; authorship and/or publication of this; biography; identity; interest with respect to the research; palliative care; qualitative analysis; reminiscence
Background: Reminiscence is used in a range of different interventions in palliative care, for example, Dignity Therapy or Life Review. However, literature has focused mainly on the methodology, and little has been published on patients' priorities and primary concerns. Objective: This study looks at themes emerging in a reminiscence intervention with patients confronted with a life-limiting disease. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. Setting/subjects: Seventeen patients who were receiving palliative care at the University Hospital Bonn participated in interviews reviewing parts or phases of their lives. Results: Patients expressed satisfaction and a sense of well-being with the intervention. Major themes emerging in the interviews were the factors involved in the development and expression of personality, such as character-forming influences, self-image, self-awareness, and philosophy of life. Talking about personality was entangled with influences from growing up, qualification/job, partner/spouse, children, resources, twists of fate/crossroads, and coping. Conclusion: The topics emerging from the interviews differed from the scope of guiding questions in common reminiscence methods like Life Review or Dignity Therapy. The underlying motivation of patients seemed to be the search for identity and continuity in one's life.
Hesse M; Forstmeier S; Ates G; Radbruch L
Palliative Care & Social Practice
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/2632352419892629" target="_blank" rel="noreferrer noopener">10.1177/2632352419892629</a>
End-of-life care in the pediatric intensive care unit: Survey in Japan
Adolescent; Attitude of Health Personnel; Child; Clinical Decision-Making/mt [Methods]; Health Care Surveys; Humans; Infant; intensive care units; Intensive Care Units; Japan; Palliative Care/mt [Methods]; Palliative Care/sn [Statistics & Numerical Data]; Palliative Care/st [Standards]; Pediatric/sn [Statistics & Numerical Data]; Pediatric/st [Standards]; Physicians'/sn [Statistics & Numerical Data]; Physicians'/st [Standards]; Practice Patterns; Practice Patterns Physicians'/*ethics; Preschool; Terminal Care/mt [Methods]; Terminal Care/sn [Statistics & Numerical Data]; Terminal Care/st [Standards]
BACKGROUND: End-of-life (EOL) care is an important topic in critical care medicine, but EOL discussions with families can be difficult and stressful for intensivists. The aim of this study was to clarify the current practices and barriers facing pediatric intensive care unit (PICU) EOL care and to identify the requisites for excellent PICU EOL care in Japan. METHODS: A survey was conducted in 29 facilities across Japan in 2016. The questionnaire consisted of 19 multiple-choice questions and one open-ended question. RESULTS: Twenty-seven facilities responded to the survey. Only 19% had educational programs on EOL care for fellows or residents. Although 21 hospitals (78%) had a multidisciplinary palliative care team, only eight of these teams were involved in EOL care in PICUs. Mental health care for health-care providers provided by a psychiatrist was rare (4%). The free comments were categorized as individual, team, environment, legal/ethics, or culture. Commonly raised individual issues included "lack of experience and knowledge about EOL care", "fear of making the decision to end care", and "reluctance to be involved in EOL care because of its complex process". Team issues included "insufficient frequency of conferences" and "non-multidisciplinary approach". Legal and ethics issues were "lack of legal support" and "fear of lawsuits". CONCLUSIONS: This study is the first to investigate the current conditions and barriers in PICU EOL care in Japan. Most of the facilities involved were not satisfied with current practices. A need was identified for relevant educational programs, as well as the importance of multidisciplinary and legal support.
Seino Y; Kurosawa H; Shiima Y; Niitsu T
Pediatrics International
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/ped.13924" target="_blank" rel="noreferrer noopener">10.1111/ped.13924</a>
How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
Adolescent; Adolescent Behavior/psychology; advance care planning; Attitude to Death; Critical Illness/*psychology; Female; Humans; literature; literature and medicine; Male; Medicine in Literature; Modern; narrative ethics; narrative medicine; paediatrics; Terminal Care/*psychology
Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent's preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.
Kirkman A O; Hartsock J A; Torke A M
Medical Humanities
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/medhum-2017-011400" target="_blank" rel="noreferrer noopener">10.1136/medhum-2017-011400</a>
Healthcare professionals' experiences of perinatal loss: A systematic review
Abortion; Adult; Female; Health Personnel/*psychology; healthcare professionals; Humans; Infant; Maternal Health Services/*manpower; neonatal units; Newborn; Perinatal Death; Perinatal loss; Pregnancy; psychological experiences; Spontaneous/*psychology; Stillbirth; Stillbirth/*psychology
Healthcare professionals' psychological involvement in perinatal loss is a largely overlooked subject by healthcare systems, scientific research and prevention policies. A systematic scientific review has been carried out about emotional experiences, attributed meanings and needs conveyed by healthcare professionals in relation to perinatal loss. We identified 213 studies between 1985 and 2015, 20 of which were included in the present study for qualitative analysis. Our results point out the need for a targeted vocational training in perinatal loss, enabling healthcare professionals to achieve a proper management of their own internal states.
Gandino G; Bernaudo A; Di Fini G; Vanni I; Veglia F
Journal of Health Psychology
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1359105317705981" target="_blank" rel="noreferrer noopener">10.1177/1359105317705981</a>
Paediatric long-term home ventilation: Should we rethink social inclusion for these children?
adolescent; artificial ventilation; assisted ventilation; attention; child; conference abstract; female; human; major clinical study; male; medical record review; neuromuscular disease; noninvasive ventilation; palliative therapy; retrospective study; school child; school dropout; secondary health care; social exclusion; social needs; tracheostomy
Background: over the last 30 yrs, many studies have investigated long-term ventilatory support (LTVS), focusing primary on medical issues. Few researches have focused on social burden for families with a child in need of LTVS. Objectives: aim of the study was to analyze the social needs of children and families living with home LTVS and highlights signs of social exclusion. Methods: retrospective medical records review of children on home LTVS, followed by our Regional Paediatric Palliative Care Network. According to Wallis and Jardine we defined paediatric LTVS as “any child below the age of 17 who is medically stable and requires a mechanical aid for breathing either invasively by tracheostomy or by non-invasive mask interface for all, or part of the day.” We extended the age to 23 yrs. The following data were adopted as signs of social exclusion: absence of secondary care-giver (meaning the child must be with the same person throughout the day), abandon of work by a parent, no chance for family holiday, school dropout. Results: among 87 patients, 33 cases are ventilated invasively and 54 with Non-invasive Ventilation. Median age is 9,5 yrs; 52% of the children are affected by a neuromuscular disease, 21% being permanently enticed. Thirty-seven (42,5%) children don’t have a secondary care-giver, in 41 families one parent abandoned work and 12 children experienced school dropout. Conclusions: Children and families living with home LTVS have special needs not only in the medical field but also in the social one. Our data confirm that these children are at high risk for exclusion from the society and suggest more attention on these aspects which represent significant challenge for clinicians.
Benedetti F; Agosto C; Divisic A; Rusalen F; Moro N; Pellizzon M; Ometto M; Grigolon E; Lazzarin P; Benini F
European Respiratory Journal
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1183/13993003.congress-2019.PA639" target="_blank" rel="noreferrer noopener">10.1183/13993003.congress-2019.PA639</a>
Increasing joy for pediatric palliative care providers: #pactimpact a quality improvement initiative for resiliency in the workplace
child; coffee; conference abstract; controlled study; home visit; human; outcome assessment; palliative therapy; patient care; self report; total quality management; Workplace
Our pediatric palliative care group is called the "Pediatric Advanced Care Team," also known as "PACT." We created a novel system called #PACTimpact to identify situations in which team members go above and beyond for patients providing meaningful impact for our families. We hypothesize that by recognizing the impact we make on families we will bring more joy in the workplace ultimately facilitating improved resiliency. These impacts may be big or small such as conducting an afterhours home visit or bringing a parent a coffee. Problem statement: Pediatric palliative care (PPC) is emotionally difficult and we are at risk for suboptimal resiliency. PPC clinicians may not recognize the full value they provide. Currently, we do not have a system in place for improving joy or resiliency. AIM: By April 2018, we will improve our "joy meter" in our PACT members from our baseline of 53% to 75%. Process for improvement: Utilizing the model for improvement we asked 3 key questions. What are we trying to accomplish: Increased resiliency and joy. How will we know the change is an improvement: Regular periodic surveys of the "joy meter." What change can we make that will result in improvement: Increase recognition of impactful patient care. During the initial PDSA cycle we encouraged team members to tweet impacts using the hashtag #PACTimpact. Assessment of the initial cycle revealed that many team members were unfamiliar with twitter so a post-it note board was utilized as well. The number of impacts recorded increased as a result of this change. The outcome measure was assessed using a SurveyMonkey to have team members rate joy on a sliding scale before and after the intervention. Process measure: Number of impacts recorded. Totaled weekly. Outcome measure: Average team joy on 0-100 scale. Balance measure: Qualitative report of negative impacts on team members Discussion: Our aim was not achieved. Comments indicated our intervention is effective at improving joy. We are planning additional cycles to attain our aim, which was to increase our "joy meter" from our baseline of 53% to 75%. We increased the "joy meter" to 69% after our first three-week cycle. Factors that affected success: We depended on members to notify us about meaningful impact on patient care. Some #PACTimpacts could be missed if members did not self-report or report other positive impacts on patient care. Next steps: We will continue to use our "joy meter" to track joy in the workplace. We will reach out to other departments to ask them to recognize when we are helpful with patient care to broaden our recognition scope. We will consider appointing a wellness officer, and we will continue to track the "joy meter" through interventions as this position is developed.
Morvant A; Jones E
Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Pediatric palliative podcasting as a tool to reach families
child; clinical article; conference abstract; female; follow up; human; male; organization; palliative therapy; season; social media; total quality management; touch
Podcasts have grown in popularity over the last several years. Pediatric Palliative Care services can use this medium of communication to reach families more effectively. Podcast use is determined by the schedule of parents rather than providers. This abstract will describe the process of creating a podcast, strategies for creating and releasing content, and how to follow up content once released. The past 10 years have seen rapid advancements in the affordability and quality of recording options. Many institutions have seen the value of media outreach directly to patients and are working to lower the obstacles to engaging through this medium. Our team looked into both the physical process of recording and the various ways to disseminate content. After evaluating options, we choose to record using a combination of personally-owned, portable recording equipment and a recently opened institutional facility equipped with recording tools. Looking at hosting services used by various organizations, we chose to follow the pattern of the Center for the Advancement of Palliative Care (CAPC) which uses a free, widely available site. Using this tool, we are able to post links to podcasts in the various social media formats used by our team. Our team chose to start with 5 episodes, which would be released all at once to start a ?season? of out podcast. We chose topics for our discussion based on our target audience, parents of children with Palliative Care needs, and the teams experience with parental questions and issues. Topics focused on fundamentals of Palliative Care and common questions parents ask such as, "How do I advocate for my child while in the hospital"?. The 2 hosts plan an outline for each of these discussions and then record an episode trying to touch on major points. The hosts create outlines detailed enough to be useful while preserving a sense of spontaneity. After the episode is recorded it is edited for length and flow. Our goal for the episodes was roughly 20-30 minutes. This is based on experts in the field who consider this a ?drive-time? length that listeners can commit to. Once podcasts are released into the community, we follow basic analytics including the number of listens, percent of listeners who complete the episode, location of listeners, and time of day episodes are played. This helps give us an idea of what is going well, what should be continued, and what should change. Feedback is also elicited from listeners for improvement and topics for future episodes. We feel that podcasts are an effective tool to reach families and will continue our program. Our future plans include more rigorous quality improvement methodology and finding opportunities for guest hosts, including parents.
Moore D; Bills O
Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
What impedes timely pediatric palliative care consults? A preliminary report
child; conference abstract; education; female; human; major clinical study; male; medical staff; narrative; nurse; Palliative therapy; pediatric patient; quality of life; responsibility; terminal care
Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of the patient and family. Studies have shown that despite the benefits of PPC, many patients do not benefit from timely consultation (Morita et al.). Little, however, is known about the reasons for this. Objective: The purpose of this QI project was to identify barriers to PPC to inform an intervention aimed at increasing timely consultations at our hospital. Methods: Our team surveyed members of the inter-professional healthcare team as well as patients/families to assess attitudes, knowledge, and barriers related to PPC. In addition, parents gave narrative feedback at a hospital parent advisory board meeting. Results: Survey of healthcare workers (n = 243) showed that nurses had the smallest percentage of very favorable opinions toward PPC (64%), with the NICU (65%) and the ED (57%) as the units reporting lowest in that category. Nurses also had the lowest percentage of “good” or “excellent” understanding of PPC (27%), with the NICU (29%) and the ED (29%) again reporting lowest in that category. Attitude was positively correlated with knowledge (figure 1): 93% of respondents who rated their understanding as excellent had a very favorable opinion of PPC. The top barriers to PPC consultation were not knowing whose responsibility it was to order a consultation (24%) and worry about undermining parental hope (19%). More than half (68%) of respondents indicated that they ask permission of the patient/family before ordering a PPC consultation. Respondents reported that PPC consultations generally occurred when curative interventions were no longer possible (37%) and during end-of-life care (24%). Survey of patients/families (n = 33) showed that only 30% had a confident understanding of PPC services and 55% had received information regarding PPC from medical staff. Seventy percent had a favorable view of PPC while 21% needed more information to form an opinion. Comments from the parent advisory board indicated that lack of information regarding PPC is the major barrier for PPC utilization for patients/families. Conclusions and future directions: These results indicate that attitudes toward PPC and lack of education regarding PPC are the most common barriers to timely PPC consultations. As well, lack of information is likely a major contributing factor to unfavorable attitudes. Our intervention will aim to improve knowledge about and thus attitudes toward PPC. With each intervention we will complete a Plan-Do-Study-Act (PDSA) cycle and evaluate its success in increasing timely PPC consultations, with the ultimate goal of improving quality of life and goal-oriented care for our pediatric patients.
Marell P; Gupta S; Goloff N; Sherva K
Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids
cancer patient; cancer prognosis; catchment; child; childhood cancer; conference abstract; controlled study; counselor; distress syndrome; female; Hospice Care; hospital personnel; human; magnet; major clinical study; male; nurse practitioner; outpatient; palliative therapy; patient referral; pediatric hospital; pediatric patient; prognosis; program impact; quality of life; registered nurse; social worker
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their families; however, hospice services only reach about 10% of eligible children who die in the United States, with the majority of pediatric patients receiving care through adult hospice organizations. Program Design: The Quality of Life for All (QoLA) Kids program, established in August 2012, is an outpatient, community-based pediatric palliative care and hospice program that strives to enhance quality of life for pediatric patients and families, provide care coordination across multiple settings, mitigate physical, psychosocial, and spiritual distress, ensure a comfortable and peaceful death in the patient's preferred setting, and support bereaved family members and hospital staff. The program represents a partnership between two MAGNET-certified pediatric hospitals and a local home health and hospice agency. QoLA Kids comprises an extensive interdisciplinary team including physicians, nurse practitioners, registered nurses, medical social workers, spiritual counselors, child life specialists, and administrative support staff. Patients are enrolled on either the palliative care or hospice arm of the program, with flexibility to transition easily between arms as clinical status and goals of care evolve. Eligibility for the hospice arm necessitates an expected prognosis of 6 months or less left to live. Program Impact: Since programmatic inception nearly 6 years ago, QoLA Kids has served a total of 330 children and families in the local catchment area. Approximately 41% of patients (n=135) were enrolled on the palliative arm, with the remaining 59% enrolled on hospice (n=195). Between 2012-2017, the mean number of days from enrollment to death was 142 days for patients on the hospice arm (n=76) and 288 for patients on the palliative care arm (n=5). The percentage of patients with malignancies who received palliative care prior to death increased from 71% to 97% within 2 years following program implementation. Conclusions/Future Directions: QoLA Kids is an innovative program that facilitates the provision of palliative care and hospice services and resources to children with serious illness and their families in the community. Through this program, children and families have been able to access palliative care services in their community well before the end of life. After program initiation, an increase in the number of palliative care consults was also seen within the pediatric oncology patient population suggesting that the program may provide an incentive for referral to palliative care. Further investigation is needed to identify optimal metrics for ascertaining the physical and psychosocial benefits from this innovative program.
Kiefer A C; Kaye E C; Blazin L J; Baker J N
Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).