Communication of Early Integration of Palliative Care for Children With Cancer in Latin America: The Care as a Vessel Metaphor
Humans; Child; Communication; Palliative Care; Latin America; Neoplasms/therapy; Metaphor; Latin America/epidemiology
``Over the past two decades, pediatric palliative care (PPC) has evolved significantly, moving away from the concept of care provided solely at end-of-life and toward the concept of holistic, supportive care provided synergistically with disease-directed therapy across the illness course.1 Presently, the WHO defines PPC as holistic care involving all aspects of the life of a child with serious illness and their family, including the care and support of the body, mind, and spirit.2 As such, the WHO advocates for PPC provision to begin at the time of diagnosis of a life-limiting condition and continue across treatment, regardless of whether the goal is cure, life prolongation, or comfort.3 Numerous guidelines endorsed by national organizations similarly advocate for early integration of PPC in the care of patients with pediatric cancer,4-7 recognizing that involvement of PPC concurrently with cancer-directed treatment promotes patient-and family-centered care, aligns treatment with goals of care, and optimizes supportive care and quality of life.2,4-8...``
Garcia-Quintero X; Cleves D; Cuervo MI; McNeil M; Salek M; Robertson EG; Gomez W; Baker JN; Kaye EC
JCO Global Oncology
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1200/go.22.00281" target="_blank" rel="noreferrer noopener">10.1200/go.22.00281</a>
Fathers' experiences in the neonatal intensive care unit: a search for control.
Humans; Infant, Newborn; Critical Illness; Male; Professional-Family Relations; Communication; Qualitative Research; Interviews as Topic; Religion; Stress, Psychological; Infant, Premature; Father-Child Relations; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; *Internal-External Control
OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male physician. Fathers were asked about their level of comfort with or concerns about staff communication regarding their infant, about accessing information, and about more general perceptions of their experience in the neonatal intensive care unit. Interviews were audiotaped and transcribed for analysis. Coding used content analysis with construction of themes by 3 researchers., RESULTS: The overarching theme for fathers was a sense of lack of control. Their world view, as a "backdrop" theme, provided context for all of the themes. Four other interrelated subthemes were identified, including information; communication, particularly with the health care team; fathers' various roles; and external activities. Fathers reported that relationships with friends/family/health care team, receiving information consistently, and receiving short written materials on common conditions were ways of giving them support. The fathers said that speaking to a male physician was a positive and useful experience., CONCLUSIONS: Fathers experience a sense of lack of control when they have an extremely ill infant in the NICU. Specific activities help fathers regain a sense of control and help them fulfill their various roles of protectors, fathers, partners, and breadwinners. Understanding these experiences helps the health care team offer targeted supports for fathers in the NICU.
Arockiasamy, Vincent; Holsti, Liisa; Albersheim, Susan
Pediatrics
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer noopener">10.1542/peds.2007-1005</a>
Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability.
Humans; Child; Child, Preschool; Female; Male; Middle Aged; Parent-Child Relations; Communication; Adult; Qualitative Research; Gender Identity; Adaptation, Psychological; Focus Groups; Nursing Methodology Research; *Attitude to Health; *Disabled Children/px [Psychology]; Early Intervention, Educational; *Fathers/px [Psychology]; Stereotyping; Marriage/px [Psychology]; *Mothers/px [Psychology]; *Parenting/px [Psychology]; *Down Syndrome/px [Psychology]; Disabled Children/rh [Rehabilitation]; Down Syndrome/rh [Rehabilitation]
This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One concerns roles, actual and expected, in the various subsystems of family life. The other concerns the normalization and stigmatization that arise because of the child's problem. Mothers tend to score better in terms of interpersonal and group communications. It would seem that the fathers' expectations are harder to fulfil than the mothers'. The fathers' expectations are attuned to the outer world; the actual day-to-day tasks related to the child's care are not their priority. The mothers are less demanding and their expectations are more self-focused. Interestingly, these families are similar to families of children without a disability; however, the difficulties they experience are accentuated by the presence of a child with a problem.
Pelchat, Diane; Lefebvre, Helene; Perreault, Michel
Journal of Child Health Care
2003
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/10.1177/13674935030074001" target="_blank" rel="noreferrer noopener">10.1177/13674935030074001</a>
Consulting parents bereaved by childhood cancer: A qualitative study to improve bereavement services
Parents; Bereavement; Communication; Interviews; Referral and Consultation; Qualitative Studies; Empathy; Human; Thematic Analysis; Childhood Neoplasms; Patient Care; Psychosocial Factors
Twelve Australian parents bereaved by childhood cancer were interviewed
Loxton I; Oxlad M; Perry A
Death Studies
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07481187.2022.2142325" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142325</a>
Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation
palliative care; communication; neonatology; prematurity; nursing; Pregnancy; parental perspectives; medical education; twins; perinatal loss; Butterflies; multiple pregnancy; triplets
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits. Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them. Participants expressed gratitude in their open-ended answers: "I feel a lot more confident in supporting parents in this situation". In the Ribbon project (workshop for neonatal clinicians, Quebec; n = 242), 97% were satisfied with the training and reported feeling more comfortable caring for bereaved parents. Knowledge improved pre-post training. Audits revealed that 100% of cases were identified on the incubator and the baby's/babies' admission card, all changed rooms after the death of their co-twin/triplet, and all had the name of their co-twin/triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside. Conclusion: Different educational strategies to optimize communication with families after the perinatal loss of a co-twin are appreciated and have a positive impact.
Boutillier B; Embleton ND; Belanger S; Bigras-Mercier A; Larone Juneau A; Barrington KJ; Janvier A
Children (Basel)
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children10081407" target="_blank" rel="noreferrer noopener">10.3390/children10081407</a>
Parental perspectives on the clinician's approach to serious illness communication: A qualitative study
Parents; Children; Palliative care; Communication; Qualitative research; Serious illness
OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was used, employing a thematic analysis of data derived through semi-structured interviews which presented hypothetical vignettes of serious illness conversations to elicit parental perspectives. Adult parents of children with a life-limiting condition, in a stable phase of care, known to the Neurodevelopment and Disability Department of a tertiary Children's Hospital in Melbourne, Australia, were purposively sampled to achieve a broad representation of relevant clinical and sociodemographic factors. RESULTS: Eleven parents (72% female) of children aged 7 months to 18 years participated. Two major themes characterized parental perspectives on serious illness communication: "Approaches clinicians can use to lay the foundation for quality communication" including checking in, validation, aligning with hopes and a commitment to listening and being present; and "Approaches clinicians can use to aid the delivery of information" including honesty and compassion, presenting possibilities, providing a plan, and conveying the clinician's experience. SIGNIFICANCE OF RESULTS: This study provides novel insights into the perspectives of parents of children with life-limiting conditions that inform how clinicians may best approach serious illness communication. The findings highlight the need for clinicians working in pediatric health care to be cognizant of parents' needs before and during conversations. Laying the foundation for quality communication is important alongside the approaches outlined that aid in the delivery of information.
Mills N; Chapman M; Sutherland I; Gillam L; Collins A
Palliative and Supportive Care
2023
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<a href="http://doi.org/10.1017/s1478951523001153" target="_blank" rel="noreferrer noopener">10.1017/s1478951523001153</a>
Empathy Expression in Interpreted and Noninterpreted Care Conferences of Seriously Ill Children
Humans; Child; Cohort Studies; Female; Male; Communication; Prospective Studies; Emotions; Empathy
BACKGROUND AND OBJECTIVES: Clinician empathy is associated with improved
Olszewski AE; Bogetz J; Mercer A; Bradford MC; Scott M; Fields B; Williams K; Rosenberg AR; Trowbridge A
Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2022-059447" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-059447</a>
Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions
Humans; Infant; Decision Making; Communication; Qualitative Research; Uncertainty; Emotions; Parents; Parents/px [Psychology]; Decision Making
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.
Koch A; Albrecht T; Kozhumam AS; Son H; Brandon D; Docherty SL
Journal of Child Health Care
2023
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<a href="http://doi.org/10.1177/13674935211059041" target="_blank" rel="noreferrer noopener">10.1177/13674935211059041</a>
Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
bereavement; communication; emotions; palliative care; siblings
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.
Kreicbergs U; Nilsson S; Jenholt Nolbris M; Lövgren M
Children
2022
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<a href="http://doi.org/10.3390/children9050641" target="_blank" rel="noreferrer noopener">10.3390/children9050641</a>
Palliative care education in an Australian undergraduate pharmacy curriculum: an exploratory descriptive study
Palliative Care; Education; Adolescence; Adult; Female; Human; Male; Questionnaires; Surveys; Australia; Clinical Reasoning; Communication; Confidence; Curriculum; Descriptive Research; Descriptive Statistics; Education Pharmacy; Empathy; Exploratory Research; Mann-Whitney U Test; Prospective Studies; Qualitative Studies; Reflection; Self Concept; Students Undergraduate; Thematic Analysis
Ong JA; Rego J; Ung T; Kumar S; Ash K; Saini B; Yates P
International Journal of Pharmacy Practice
2023
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<a href="https://www.mdpi.com/2227-9067/10/3/482"><span>10.1093/ijpp/riac093</span></a>
Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns
Critical Illness; Decision Making; Child; Communication; Critical Illness; Critical Illness/th [Therapy]; Death; Decision Making; Delivery of Health Care; Female; Humans; Infant Newborn; Parents; Pregnancy; Probability; Qualitative Research; Uncertainty
BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process., METHODS: A qualitative approach to analysing audio-recorded conversations between neonatal team and parents. Eight critically ill neonates and a total of 16 conversations from two Swiss level III neonatal intensive care units were included., RESULTS: Three main themes were identified: the weight of uncertainty in diagnosis and prognosis, the decision-making process, and palliative care. Uncertainty was observed to impede the discussion about all options of care, including palliative care. Regarding decision-making, neonatologists oftentimes conveyed to parents that this was a shared endeavour. However, parental preferences were not ascertained in the conversations analysed. In most cases, healthcare professionals were leading the discussion and parents expressed their opinion reactively to the information or options received. Only few couples proactively participated in decision-making. The continuation of therapy was often the preferred course of action of the healthcare team and the option of palliative care was not mentioned. However, once the option for palliative care was raised, the parents' wishes and needs regarding the end-of-life care of their child were obtained, respected, and implemented by the team., CONCLUSION: Although shared decision-making was a familiar concept in Swiss neonatal intensive care units, parental involvement in the decision-making process illustrated a somewhat different and complex picture. Strict adherence to the concept of certainty might impede the process of decision-making, thereby not discussing palliation and missing opportunities to include parental values and preferences. Copyright © 2023. The Author(s).
Limacher R; Fauchere JC; Gubler D; Hendriks MJ
BMC Palliative Care
2023
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<a href="http://doi.org/10.1186/s12904-023-01170-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01170-z</a>
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members
communication; family; Patient Participation; preference for care; qualitative; self report; siblings
BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. OBJECTIVES: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. METHOD: A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. RESULTS: A total of 79 participants were recruited: 39 children aged 5-17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0-17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. CONCLUSIONS: This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children.
Coombes L; Harðardóttir D; Braybrook D; Roach A; Scott H; Bristowe K; Ellis-Smith C; Downing J; Bluebond-Langner M; Fraser LK; Murtagh FEM; Harding R
The Patient
2023
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<a href="http://doi.org/10.1007/s40271-023-00627-w" target="_blank" rel="noreferrer noopener">10.1007/s40271-023-00627-w</a>
The experience of families in face of the finiteness of their children in the process of adopting palliative care
Family; Palliative Care; Adaptation Psychological; Child; Communication; Existentialism; Humans; Only Child; Palliative Care; Qualitative Research
OBJECTIVE: To reveal the experience of family members after learning their child would adopt palliative care., METHOD: Phenomenological research on Heidegger's perspective. The participants were eleven family members of children who were recommended palliative care in the Pediatric Intensive Care Unit from a university hospital in southern Brazil. The statements were obtained in a semi-structured interview, from January to November/2017, and submitted to Heidegger's theoretical-philosophical analysis. Research approved by the institution's Ethical Committee., RESULTS: The communication of palliative care triggers the perception of the child's existencial facticity in the Family, revealing reactions explained in the thematic dimensions: "Coping with the finiteness of the child when confronted with the proposal of adopting palliative care" and "The need for compassionate and attentive care"., FINAL CONSIDERATIONS: Phenomenology allows us to understand the parent's existential purpose. An understanding perspective can help interdisciplinary teams to communicate the adoption of palliative care in a sensitive and ethical way, focusing on the best interest of the child.
Neis M; Issi HB; da Motta Mda G.; Rocha CMF; Carvalho PRA
Revista Gaúcha de Enfermagem
2023
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<a href="http://doi.org/10.1590/1983-1447.2022.20220174.en" target="_blank" rel="noreferrer noopener">10.1590/1983-1447.2022.20220174.en</a>
Shades of Care: Understanding the Needs of Racially and Ethnically Diverse Paediatric Patients, their Families, and Health Care Providers in North America
Humans; Child; Communication; United States; Palliative Care; North America; Health Personnel
While race and ethnicity have been acknowledged as determinants of health, there remain gaps regarding their effects on experiences of paediatric care. This scoping review examines empirical literature regarding the state and experience of paediatric care provided to racially and ethnically diverse families in North America. We seek to clarify the needs of care administrators and recipients, as well as to conceptualize what paediatric care must look like to enable equitable practices and optimal health outcomes. Utilizing Arksey and O'Malley's framework, we reviewed literature published between 2005 and 2020, most of which was written within an American context. The literature reviewed featured quantitative, qualitative and mixed methods studies. Paediatric care administrators and recipients collectively identified the following as domains requiring an increased focus: (1) knowledge (awareness or training), (2) alignment of views and values, (3) resources and (4) communication. Findings suggest overall that despite there being merit in the cultural competency efforts underway, more patient-centric approaches are vital. This review concludes by encouraging the sustained development of cultural safety initiatives in paediatric care to ultimately promote patient comfort and provider-patient collaboration.
Ladha R; Neiterman E
Journal of Child Health Care
2023
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<a href="http://doi.org/10.1177/13674935211041863" target="_blank" rel="noreferrer noopener">10.1177/13674935211041863</a>
Ethical Considerations in Critically Ill Neonatal and Pediatric Patients
Ethics; Palliative care; Infant Newborn; Communication; Critical Illness; Critical care; Congenital diaphragmatic hernia
Summary The care of critically ill neonates and pediatric patients can be particularly emotionally and ethically challenging. Emerging evidence suggests that we can improve the patient, family, and care team experience in the critical care setting through a better understanding and application of ethical frameworks and communication strategies. We conducted a multidisciplinary panel session at the American Academy of Pediatrics National Conference and Exhibition in the fall of 2022 wherein we explored a myriad of ethical and communication considerations in this unique patient population, with congenital diaphragmatic hernia (CDH) as the congenital anomaly/disease framework. In this review, we will cover state of the art topics in ethics, communication, and palliative care including basic terminology, communication strategies such as trauma-informed communication, establishing/evolving goals of care, futility, medically inappropriate treatment, ethical frameworks, parental discretion, establishing milestones, internal/external intentions, and re-direction of care. These topics will be helpful to many specialties who are involved in the care of critically ill neonates and children including maternal fetal medicine, pediatrics, neonatology, pediatric critical care, palliative care, and pediatric surgery, along with the pediatric surgical subspecialties. We use a theoretical CDH case as an example and include the live audience responses from the interactive session. This primer provides overarching educational principles, as well as practical communication concepts, that can cultivate compassionate multidisciplinary teams, equipped to optimize family-centered, evidence-based compassionate communication and care.
Harting MT; Munson D; Linebarger J; Hirshberg E; Gow KW; Malek MM; Robbins AJ; Turnbull J
Journal of Pediatric Surgery
2023
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<a href="http://doi.org/10.1016/j.jpedsurg.2023.02.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpedsurg.2023.02.009</a>
Please Look at My Baby - When Clinicians Should Say the Word "Hospice"
Humans; Infant; Communication; Hospices; Physician-Patient Relations; Truth Disclosure; Hospice Care
For the first time since he was born, we looked at our son as a baby who had withstood endless medical interventions. Rather than taking each new diagnosis in stride, we stopped to reflect. [...]
Grinberg G
The New England Journal of Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1056/NEJMp2213031" target="_blank" rel="noreferrer noopener">10.1056/NEJMp2213031</a>
Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Palliative Care; Professional-Family Relations; Terminal Care; Communication; Collaboration; Hospitals; Attitude of Health Personnel; Professional-Patient Relations; Health Services Accessibility; Human; Education; Reward; Evaluation; Pediatric Care; PubMed; Communities; Multidisciplinary Care Team; Systematic Review; Multimethod Studies
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric palliative care. Methods: Systematic review of published relevant studies in PubMed and Scopus. The bibliography search took place for articles published from 2017 to 2022. The study included articles on qualitative, quantitative or mixed studies of health professionals in hospitals or in the community that provided pediatric palliative care to people <25 years of age, published from 2015 onwards, exploring their views on palliative care. Results: The results of 15 studies performed on 1,505 health professionals showed that their views focused on the rewards gained and challenges experienced from providing pediatric palliative care, the relationship they develop with the child and family, the collaboration and role of the interdisciplinary team, the role of communication and education, and to the effect of the care on patients and their families as well as on their own personal lives. They identify barriers at individual, team, organizational, hospital, community, and policy level. To address these barriers, they used strategies to support health professionals, patients and families, work and care organization strategies, strategies to improve relationships, communication, education, collaboration and intercultural care. Conclusions: Pediatric palliative care is considered both a reward and a challenge for health professionals but it is obvious that their poor and/or inadequate education and insufficient organization of work and care is in need of improvement in order to provide it effectively.
Anastasopoulou E; Dousis E
International Journal of Caring Sciences
2022
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
Adolescent; anxiety; autism spectrum disorder; Autism Spectrum Disorder; behaviour; Child; Child, Preschool; communication; Humans; hyperactivity; Infant; Infant, Newborn; Medical Marijuana; Parents; Prospective Studies; Retrospective Studies; Medicinal Cannabis
BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents are increasingly turning to clinicians for advice regarding the use of medicinal cannabis to manage behavioural disturbances. OBJECTIVE: The objective of this scoping review was to identify and map symptoms, outcomes and adverse events related to medicinal cannabis treatment for ASD-related behaviours. METHODS: Ovid MEDLINE, Embase, CINAHL, PsycInfo, Web of Science Core Collection, Google Scholar and grey literature sources were searched up to 5 January 2020 for studies. Included studies met the following criteria: (1) investigate the use of medicinal cannabis, (2) at least 50% participants had ASD, (3) at least 50% of the study population was 0-18 years old and (4) any study design (published or unpublished). RESULTS: We identified eight completed and five ongoing studies meeting the inclusion criteria. All studies reported substantial behaviour and symptom improvement on medicinal cannabis, with 61% to 93% of subjects showing benefit. In the three studies reporting on concomitant psychotropic medication usage and with cannabis use, up to 80% of participants observed a reduction in concurrent medication use. Adverse events related to cannabis use were reported in up to 27% of participants related, and two participants had psychotic events. CONCLUSIONS: Early reports regarding medicinal cannabis in paediatric ASD symptom management are presented as positive; the evidence, however, is limited to very few retrospective cohort and observational studies. Evidence of safety and efficacy from prospective clinical trials is needed.
Fletcher S; Pawliuk C; Ip A; Huh L; Rassekh SR; Oberlander TF; Siden H
Child: Care, Health and Development
2022
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<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">10.1111/cch.12909</a>
End of Life Communication among Caregivers of Children with Cancer: A Qualitative Approach to Understanding Support Desired By Families
Communication; Caregiver; End of life; Pediatric; Oncology
OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer. METHODS: Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis. RESULTS: Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support. SIGNIFICANCE OF RESULTS: Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.
Kenney AE; Bedoya SZ; Gerhardt CA; Young-Saleme T; Wiener L
Palliative and Supportive Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/s1478951521000067" target="_blank" rel="noreferrer noopener">10.1017/s1478951521000067</a>
Longitudinal Understanding of Prognosis among Adolescents with Cancer
Child; Adolescent; Female; Follow-Up Studies; Humans; Male; Parents/psychology; Prognosis; Longitudinal Studies; oncology; Surveys and Questionnaires; Communication; palliative care; psycho-oncology; psychosocial; Neoplasms/pathology/psychology/therapy; Oncologists/psychology
OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information. RESULTS: Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05). CONCLUSIONS: Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.
Fisher RS; Kenney AE; Fults MZ; Manring S; Rodriguez EM; Desjardins L; Rausch JR; Young-Saleme T; Ranalli MA; Vannatta K; Compas BE; Gerhardt CA
Pediatric Blood and Cancer
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.28826" target="_blank" rel="noreferrer noopener">10.1002/pbc.28826</a>
Advance Care Planning For Adolescents with Cancer and Their Parents: Study Protocol of the Boost Pacp Multi-Centre Randomised Controlled Trial and Process Evaluation
Child; Adolescent; Humans; Terminal Care; Surveys and Questionnaires; Parents; Communication; Advance Care Planning; Randomized Controlled Trials as Topic; Multicenter Studies as Topic; Advance care planning; Neoplasms/therapy; Adolescent; Multi-Centre randomised controlled trial; Paediatric oncology; Paediatric palliative care; Parent-adolescent communication
BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-adolescent communication on different ACP themes including those not limited to end-of-life care. The aim of this study is to evaluate the effectiveness and implementation, context and mechanisms of impact of a novel ACP program in paediatric oncology. METHODS: We will conduct a multi-centre parallel-group randomised controlled superiority trial with embedded mixed-methods process evaluation in Flanders, Belgium. Adolescents aged 10-18 who have cancer, and their parent(s) will be recruited via all four university hospitals in Flanders, Belgium, and support groups. Families will be randomised to receive care as usual or the multicomponent BOOST pACP program, consisting of three conversation sessions between an external facilitator and the adolescent and parent(s). The primary endpoint is improved parent-adolescent communication from the perspective of the adolescent. Secondary endpoints are adolescents' and parents' attitudes, self-efficacy, intention and behaviour regarding talking about ACP themes with each other, parents' perspective of shared decision making in the last clinical encounter, and the paediatric oncologist's intention and behaviour regarding talking about ACP themes with the family. Measurements will be performed at baseline, at 3 months and at 7 months using structured self-reported questionnaires. We will perform a process evaluation in the intervention group, with measurement throughout and post-intervention, using structured diaries filled out by the facilitators, interviews with facilitators, interviews with involved paediatric oncology teams, and audio-recordings of the BOOST pACP conversations. DISCUSSION: The BOOST pACP program has been developed to stimulate conversations on ACP themes between parent(s) and the adolescents, simultaneously lowering the threshold to discuss similar themes with healthcare professionals, initiating a process of normalization and integration of ACP in standard care. This combined outcome and process evaluation aims to contribute to building the necessary evidence to improve ACP in paediatric oncology. TRIAL REGISTRATION: The study is registered at ISRCTN, ISRCTN33228289 . Registration date: January 22, 2021.
van Driessche A; De Vleminck A; Gilissen J; Kars MC; van der Werff TBJ; Deliens L; Cohen J; Beernaert K
BMC Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12887-021-02841-7" target="_blank" rel="noreferrer noopener">10.1186/s12887-021-02841-7</a>
A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer
child; hospice; Child; Humans; cancer; communication; palliative care; Communication; Terminal Care; Prospective Studies; hospice; Death; Pilot Projects; Hospice Care; goals-of-care; Neoplasms/therapy; cancer; palliative care; communication; Child; goals-of-care
Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL. Method(s): This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope. Result(s): Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and child pain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001). Conclusion(s): COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased child pain while supporting hope and reducing uncertainty in their parents. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Moody KM; Hendricks-Ferguson VL; Baker R; Perkins S; Haase JE
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.03.033" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.03.033</a>
Perceptions of the Parents of Deceased Children and of Healthcare Providers about End-Of-Life Communication and Breaking Bad News at a Tertiary Care Public Hospital in India: A Qualitative Exploratory Study
Palliative care; communication; Pediatrics; Parents; Nurses; Qualitative Studies; Physicians
BACKGROUND: Parents of dying children face unique challenge and expect compassionate support from health care providers (HCPs). This study explored the experiences of the parents and HCPs about the end-of-life care and breaking bad news and related positive and negative factors in Indian context. METHODS: This qualitative exploratory study was conducted at paediatrics department of a tertiary care hospital in Delhi. In-depth interviews with the parents (n = 49) and family members (n = 21) of the children died at the hospital and HCPs (6 doctors, 6 nurses and 4 support staffs) were conducted. Also events and communication around death of eight children were observed. Data were inductively analysed using thematic content analysis method to identify emerging themes and codes. RESULTS: Doctors were the lead communicators. Majority of parents perceived the attitude, communication and language used as by resident doctors as brief, insensitive and sometimes inappropriate or negative. They perceived that the attitude and communication by senior doctor's as empathetic, positive and complete. Parents recalled the death declaration by resident doctors as non-empathetic, blunt and cold. Most parents received no emotional support from HCPs during and after death of their child. All doctors expressed that death of their patients affected them and their emotions, which they coped through different activities. The overcrowded wards, high workload, infrastructural limitation and no formal communication training added to the emotional stress of the HCPs. CONCLUSIONS: Majority of the communication by the HCPs during the hospitalisation and end-of-life period were perceived as suboptimal by the parents. The HCPs were emotionally affected and faced end-of-life communication challenges. The study highlights the communication by HCPs and support for parents during the end-of-life communication and breaking bad news. It suggests adoption of context specific communication protocol and materials and training of HCPs in communication to improve the quality of care.
Das MK; Arora NK; Chellani HK; Debata PK; Meena KR; Rasaily R; Kaur G; Malik P; Joshi S; Kumari M
PLoS One
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1371/journal.pone.0248661" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0248661</a>
Pediatric Goals of Care Communication: A Socioecological Model to Guide Conversations
Palliative Care; Quality of Life; Advance Directives; Child; Communication; Human; Parents; Patient Care Planning; United States
The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics (ie, quality of life, end of life) with an understanding of the multilayered external influences that affect patient/parent decision making. A 5-layer model is presented that describes facilitators to conversations about quality goals of care and advance directives. Each year, complex health conditions (a) affect approximately 500 000 children in the United States, 8600 of whom meet current palliative care criteria, and (b) account for over 7 million child deaths globally. Nurses can use knowledge of the unique values and culture of families with children who have complex health conditions to support them by providing high quality, ongoing goals-of-care conversations, especially if their access to pediatric palliative care is limited.
Grier K; Koch A; Docherty S
Journal of Hospice and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000923" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000923</a>
Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Result(s): Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Conclusion(s): Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.
Sisk BA; Keenan MA; Schulz GL; Bakitas M; Currie ER; Gilbertson-White S; Lindley LC; Roeland EJ; Mack JW
Journal of adolescent and young adult oncology
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2021.0154" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0154</a>
"Some things are even worse than telling a child he is going to die": Pediatric oncology healthcare professionals perspectives on communicating with children about cancer and end of life
Laronne A; Granek L; Wiener L; Feder-Bubis P; Golan H
Pediatric Blood and Cancer
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.29533" target="_blank" rel="noreferrer noopener">10.1002/pbc.29533</a>
The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility
BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists. METHODS: Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences. RESULTS: The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families. CONCLUSION: The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.
van Driessche A; Gilissen J; De Vleminck A; Kars M; Fahner J; van der Werff TBJ; Deliens L; Cohen J; Beernaert K
BMC Pediatrics
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12887-022-03247-9" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03247-9</a>
Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.
Sansom-Daly UM; Wiener L; Darlington AS; Poort H; Rosenberg AR; Weaver MS; Schulte F; Anazodo A; Phillips C; Sue L; Herbert AR; Mack JW; Lindsay T; Evans H; Wakefield CE; Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
PLOS ONE
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0270797</a>
Training in Expression of Authentic Condolences in Healthcare: A Pilot Study
Humans;Child; Pilot Projects; Internship and Residency; Curriculum; Communication; Delivery of Health Care; Bereavement; condolence; Education; pediatrics; resident
Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved families. Yet formal training in expressing condolences is currently lacking. Methods: We applied Kern's six step approach to develop, implement, and evaluate an innovative curriculum aimed at increasing pediatric residents' comfort levels with and practice of condolence expression. Results: Twelve residents participated in the pilot study. Quantitative and qualitative data demonstrate that residents' comfort levels with expressing condolences increased after implementation of the curriculum and that residents appreciated and benefitted from receiving this education. Conclusion: We successfully developed and piloted a condolence expression curriculum that was well received by pediatric residents and led to increased comfort level with expressing condolences. Research is ongoing to determine the full impact of this curriculum.
Aglio T; Porter A; Bien K; Clark L; Hashmi S; Kaye EC
Journal of Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2022.0181" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0181</a>
Update on the palliative care approach at the pediatric intensive care unit
Child; Communication; Humans; Intensive Care Units; Palliative Care; Pediatric; Quality of Life; Terminally Ill; Critical Care; Palliative Care; Terminal Care
Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the integration of palliative care in these units is a logical evolution of the clinical approach to severely ill children. This study provides an update on the indications and characteristics of the palliative care approach in the context of pediatric intensive care. Here we describe palliative care approach initiation, decision-making, communicative aspects, drug treatment, symptom management, and palliative sedation.
García-Salido A; Navarro-Mingorance Á; Martino-Alba R; Nieto-Moro M
Archivos Argentinos de Pediatria
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.5546/aap.2022.eng.e255" target="_blank" rel="noreferrer noopener">10.5546/aap.2022.eng.e255</a>
"Between Wings of Hope and Fear": Muslim Parents' Experiences with the American Health Care System
qualitative; barrier; health; transcription; pediatrics; communication; human; article; child; female; male; interview; fear; population; sample; patients; research; evaluation; care; clinical; genetic; person; analysis; size; system; content; semi; structured; United; marginalized; married; Muslim; States; thematic; wing
Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performed a thematic analysis of Muslim parents' interactions with the AHCS and how their background informs their approach to care. Method(s): This was a qualitative study of Muslim parents of children with life-limiting conditions in the Research Triangle Area from December 2019 to March 2019. We conducted semistructured interviews with parents to assess their experiences with the AHCS. We probed interview transcripts using descriptive content analysis with NVivo10. Result(s): We interviewed 10 parents in the Research Triangle Area. All patients were female, most were married, most spoke at least one other language in addition to English, and most were not born in the United States. Several themes emerged highlighting open communication with care teams, willingness to share religious affiliations, and the importance of leaning into faith and accepting God's will. Conclusion(s): A thematic analysis of Muslim parents' interactions with the AHCS describes value in honest communication, mixed concerns about how providers will react to their religious affiliation, and emphasizes the importance of leaning heavily into faith and accepting God's plan. Future studies evaluating needs of Muslim patients, especially those with different diagnoses, language barriers, and a larger sample size will further delineate needs to minimize inequalities in care.
Kolmar A; Kamal AH; Steinhauser KE
Journal of Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2022.0154">10.1089/jpm.2022.0154</a>
Inequities in Pediatric Palliative Care: Where Are the Consults?*
barrier; health; medicine; social life; pediatrics; communication; quality; relationship; palliative; Caucasian of Hispanic; competence; editorial; human; consultation; therapy; race; access; disparity; care; patient; personnel; equity; utilization; intensive; Black; cultural; difference; person; racism; bias; cell; doctor; English; ethnic; exclusion; implicit; limited; multilingualism; proficiency; racial; stem; transplant
acial and ethnic inequities are well documented in medicine (1). Patients from historically marginalized groups have consistently reported medical mistrust, poor communication, and perceived discrimination as barriers to the care that they receive (2,3). Pediatrics is no exception with racial and ethnic differences noted in the treatment of numerous conditions, including cancer and conditions treated in the PICU (4,5).
Pediatric palliative care (PPC) is a specialty that strives to prevent or ease distress while maximizing quality of life for children with life-threatening conditions, as well as their families, throughout the trajectory of a child’s illness (6). Though PPC is not specific to end of life (EOL), the utilization of these resources at EOL leads to improved outcomes for families (6). In children who undergo hematopoietic stem cell transplantation (HSCT), PPC is associated with less intervention-focused care and greater opportunity for improved EOL communication and advance preparation (6). [...]
Suttle ML
Pediatric Critical Care Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/PCC.0000000000002922">10.1097/PCC.0000000000002922</a>
Ethical Considerations in Ever-Expanding Utilization of ECLS: A Research Agenda
Communication; Ethics; Extracorporeal Membrane Oxygenation; Critical care; ECLS
Technological advancements and rapid expansion in the clinical use of extracorporeal life support (ECLS) across all age ranges in the last decade, including during the COVID-19 pandemic, has led to important ethical considerations. As a costly and resource intensive therapy, ECLS is used emergently under high stakes circumstances where there is often prognostic uncertainty and risk for serious complications. To develop a research agenda to further characterize and address these ethical dilemmas, a working group of specialists in ECLS, critical care, cardiothoracic surgery, palliative care, and bioethics convened at a single pediatric academic institution over the course of 18 months. Using an iterative consensus process, research questions were selected based on: (1) frequency, (2) uniqueness to ECLS, (3) urgency, (4) feasibility to study, and (5) potential to improve patient care. Questions were categorized into broad domains of societal decision-making, bedside decision-making, patient and family communication, medical team dynamics, and research design and implementation. A deeper exploration of these ethical dilemmas through formalized research and deliberation may improve equitable access and quality of ECLS-related medical care.
Clark JD; Baden HP; Berkman ER; Bourget E; Brogan TV; Di Gennaro JL; Doorenbos AZ; McMullan DM; Roberts JS; Turnbull JM; Wilfond BS; Lewis-Newby M
Frontiers in Pediatrics
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2022.896232" target="_blank" rel="noreferrer noopener">10.3389/fped.2022.896232</a>
Parental Perspective in Paediatric Palliative Care: A Systematic Review of Literature Using the PRISMA Method
Communication; Pediatric palliative care; Decision-making; Systematic review; Parental concerns; Perspective
Research in Parental Perspectives are pivotal in gaining understanding of parents' experiences, issues, concerns and attitude in pediatric palliative care which affects their decision making. However only a limited number of such studies have included the first-person perspective of Parents. The aim of this article is to understand the contribution of previous research on parental perspectives in pediatric palliative care through a systematic review of literature. Nine articles that met the inclusion criteria were accessed and seven key themes emerged; Psychological perspective, parental concerns, parental needs, parental attitude, spiritual perspective, cultural perspective and financial perspective. This review highlights requirement of more research into parental perspective if possible, covering all key aspects along with additional research in cultural perspective and development of validated tools, checklists and psychometric questionnaires for the assessment of these perspectives in various domains: spiritual, financial, psychological, cultural and social.
Srivastava R; Srivastava S
Indian Journal of Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/ijpc_37_2021" target="_blank" rel="noreferrer noopener">10.25259/ijpc_37_2021</a>
Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
palliative care; communication; bereavement; siblings; emotions
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.
Kreicbergs U; Nilsson S; Jenholt Nolbris M; Lövgren M
Children (Basel)
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children9050641" target="_blank" rel="noreferrer noopener">10.3390/children9050641</a>
Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study
Adult; Bereavement; cancer; child; communication; end of life; Focus Groups; Hospice Care; Humans; palliative care; Parents; Professional-Family Relations; Quality of Life; Time Factors
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
Sedig LK; Spruit JL; Paul TK; Cousino MK; Pituch K; Hutchinson R
American Journal of Hospice and Palliative Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909119895496" target="_blank" rel="noreferrer noopener">10.1177/1049909119895496</a>
Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
Adolescence; Child; Communication; Compassion; Conceptual Framework; Coping; Family Centered Care; Male; Palliative Care; Parental Attitudes; Parenting; Parents; Pediatric Care; Personality; Professional-Family Relations; Social Identity; Stress; Support; Theoretical models
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty. Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role. Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child. Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
Weaver MS; Hinds PS; Kellas JK; Hecht ML
Journal of Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0131</a>
Vulnerability of Inexperience: A Qualitative Exploration of Physician Grief and Coping after Impactful Pediatric Patient Deaths
burnout; communication; critical care; end-of-life care; professional; psychological; qualitative research; stress
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and experienced pediatricians after impactful pediatric patient deaths. Objectives: To define the salient features of an impactful pediatric patient death and physicians' grief and coping responses. As a secondary aim, we explored the cognitive and emotional training physicians described as helpful or would be helpful when coping after impactful patient deaths. Design: We conducted a prospective qualitative study using semistructured interviews and applied descriptive thematic content analysis to the transcribed interviews. Setting/Subjects: We enrolled pediatric intensive care unit trainees and attendings in a single United States institution over a six-month period from January 2021 to June 2021. Results: Both trainee and attending physicians were most impacted by acute or unexpected patient deaths. Trainees were particularly impacted by their first or early career patient deaths. Both groups found talking about the death of a patient the most helpful coping mechanism. Attending physicians coped with positive reframing, whereas novices more frequently utilized avoidance, numbing, and rumination. The importance of experienced physician's role modeling vulnerability and supporting trainee growth rather than “getting it right” were highlighted as trainee coping gaps. Conclusions: Novice physicians are particularly vulnerable to acute stress after the death of a patient and require additional coping resources and supports. Future projects should explore the impact of teaching emotion-focused coping techniques on trainee resiliency and coping after early career patient deaths.
Wolfe AHJ; Hinds PS; Arnold RM; Soghier L; Tompkins R
Journal of Palliative Medicine
2022
<a href="http://doi.org/10.1089/jpm.2022.0050" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0050</a>
A Venn diagram of vulnerability: The convergence of pediatric palliative care and child maltreatment a narrative review, and a focus on communication
Child maltreatment; Child protective services; Communication; End-of-life; Palliative care
Child maltreatment and end-of-life care independently represent two of the most emotion-laden and uncomfortable aspects of pediatric patient care. Their overlap can be uniquely distressing. This review explores ethical and legal principles in such cases and provides practical advice for clinicians. The review focuses on three archetypal scenarios of overlap: life-limiting illness in a child for whom parental rights have been terminated; life-threatening injury under CPS investigation; and complex end-of-life care which may warrant CPS involvement. While each scenario presents unique challenges, one consistent theme is the centrality of effective communication. This includes empathic communication with families and thoughtful communication with providers and community stakeholders. In almost all cases, everyone genuinely wants to do what is in the best interest of the child in these unthinkable circumstances. Transparent and collaborative communication can ensure that broad perspectives are considered to ensure that each child gets the best possible care in a manner adherent with ethical and legal standards, as they apply to each case.
Rothschild CB; Chaiyachati BH; Finck KR; Atwood MA; Leuthner SR; Christian CW
Child Abuse and Neglect
2022
<a href="http://doi.org/10.1016/j.chiabu.2022.105605" target="_blank" rel="noreferrer noopener">10.1016/j.chiabu.2022.105605</a>
Personalized support of parents of extremely preterm infants before, during and after birth
Communication; Family Integrated Care; Parent; Peer-peer support; Personalization; Prematurity
The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support families through their journey before and during neonatal intensive care disregards this individuality. This article reviews general concepts and practices that can be learned and applied by clinicians to promote resiliency and help parents cope adaptively. This review will describe how to personalize parenting support during the antenatal consultation and hospitalization for parents of extremely premature infants. To facilitate this, mindsets and care delivery models need to shift from inflexible standardized protocols to flexible guidelines that enable personalized communications, support structures and care delivery models tailored to each person’s characteristics, preferences, and values. Laurence did not expect this. He life used to be perfect: just married, new baby, happy family. Then it happened. Her membranes ruptured and here she was, being told she was in labor at 23 weeks. She was lost when she met the neonatologist; she felt that all she heard were the bad things that could happen to her baby including terrifying statistics about death and disability. This was horribly shocking, and nothing made sense in her mind. She kept thinking was “how did this happen?” Why did her body fail? It must have been her fault… she should have slept more and eaten better or maybe she was just too old… Or maybe it was the doctor’s fault for not listening to her when she had cramps 2 weeks earlier? Her husband kept telling her they would be OK, but she could not be positive. He was the optimistic one in the couple, he seemed to cope much better than her. He was in action mode, organizing child care for the other two children, but she felt paralyzed. This was not like her. What was going to happen to her, her marriage, her child, her dreams? How could she let all this happen? What could she had done to prevent this? In another part of the hospital, Clyde was born in the early morning hours. He had come into this world too early but somehow made it through the delivery despite Mel being told he might not. Mel didn’t really understand what had happened. They had given her some materials to read but the words were complicated to understand, the pictures were scary, and she could not concentrate. She was used to deal with difficulties, but not this one. She had been in foster homes since she was a child, then she lived on her own for a year. She turned 18 last week and has lived in a domestic violence shelter for the past 20 days. Clyde was attached to machines to help him breathe. He had wires all over his little body and alarms kept beeping while nurses did not seem to notice. Mel was afraid to get in the way of all the people at his bedside. She didn’t know what was happening and was embarrassed to ask. She felt like an intruder in her son’s room. When she had tried to touch Clyde, she was told: “He is sleeping, he needs to stay calm”. She was asked later if she wanted to hold him, but she was scared. What if she dropped him? What would she do, where would they go if he survived?
Haward MF; Luu TM; Pearce R; Janvier A
Seminars in Fetal and Neonatal Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.siny.2022.101335" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2022.101335</a>