One Size Doesn't Fit All in Early Pediatric Oncology Bereavement Support
Helton G; Beight L; Morris SE; Wolfe J; Snaman JM
Journal of Pain and Symptom Management
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.jpainsymman.2021.10.016" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.10.016</a>
End-of-life palliative home care for children with cancer: A qualitative study on parents' experiences
BACKGROUND: There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. METHOD(S): The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. RESULT(S): Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. CONCLUSION(S): End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family. Copyright © 2022 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.
Hansson H; Bjork M; Santacroce SJ; Raunkiaer M
Scandinavian journal of caring sciences.
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/10.1111/scs.13066" target="_blank" rel="noreferrer noopener">10.1111/scs.13066</a>
A multisite randomized controlled trial of an early palliative care intervention in children with advanced cancer: The PediQUEST Response Study Protocol
Background The Pediatric Quality of Life and Evaluation of Symptoms Technology Response to Pediatric Oncology Symptom Experience (PQ-Response) intervention aims to integrate specialized pediatric palliative care into the routine care of children, adolescents, and young adults (AYAs) with advanced cancer. Aims To evaluate whether PQ-Response, compared to usual care, improves patient’s health related quality of life (HRQoL) and symptom burden (aim 1), parent psychological distress and symptom-related stress (aim 2), and family and symptom treatment activation (aim 3). Design Multisite, randomized (1:1), controlled, un-blinded, effectiveness trial comparing PediQUEST Response (intervention) vs usual cancer care (control). Setting Five US large, tertiary level pediatric cancer centers. Participants Children (≥2 years old)/AYAs who receive care at any of the participating sites because of advanced cancer or any progressive/recurrent solid or brain tumor and are palliative care “naïve.” Target: 200 enrolled patient-parent dyads (minimum goal: 136 dyads randomized, N = 68/arm). Interventions PediQUEST Response: combines patient-mediated activation (weekly feedback of patient- and parent-reported symptoms and HRQoL to families and providers using the PediQUEST web system) with integration of the palliative care team. Usual Cancer Care: participants receive usual care, which can include palliative care consultation, and use PediQUEST web to answer surveys, with no feedback. Methods Following enrollment, patients (if ≥5 years) and one parent receive weekly PediQUEST-Surveys assessing HRQoL (Pediatric Quality of Life Inventory 4.0) and symptom burden (PediQUEST-Memorial Symptom Assessment Scale). After a 2-week run-in period, dyads who answer ≥2 PediQUEST surveys per participant (responders), are randomized (concealed allocation) and followed up for 16-weeks. Parents answer six additional surveys (parent outcomes). Outcomes Primary: mean patient HRQoL score over 16-weeks as reported by a) the parent; and b) the patient if ≥5 years-old. Secondary: patient’s symptom burden; parent’s anxiety, depressive symptoms, symptom-related stress; family activation; and symptom treatment activation. Trial registration ClinicalTrials.gov (NCT03408314) 1/24/18. https://clinicaltrials.gov/ct2/show/NCT03408314.
Dussel V; Orellana L; Holder R; Porth R; Avery M; Wolfe J
PLOS ONE
2022
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<a href="http://doi.org/10.1371/journal.pone.0277212" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0277212</a>
Factors Affecting Hospice Use Among Adolescents and Young Adult Cancer Patients
Background/Objective: Compared to existing studies on end-of-life care of mid- to older-aged patients diagnosed with cancer, there is a paucity of research on adolescents and young adult (AYA) patients. Guided by the Anderson's Behavioral Model for Healthcare Utilization, this study examined predisposing/enabling/need factors associated with hospice referral/enrollment among AYA patients diagnosed with cancer. Method(s): Data were drawn from medical records of AYA patients who died of cancer between January 2013 and December 2016 at three academic sites in the United States and were 15-39 years old at the time of death. Logistic regression was conducted (N=224). Result(s): Findings showed that hospice referral was strongly associated with hospice enrollment (odds ratio [OR]=69.68, p<0.0001). White patients were more likely to be referred to hospice care than non-White patients; the effect was, however, significant only among patients with private insurance (OR=3.44, p=0.040). Patients with public insurance were more likely to be referred to hospice than those with private insurance; the effect was, however, significant only among non-White patients (OR=5.66, p=0.005). Among those not receiving cancer treatment in the last month of life (LML), patients with hematologic malignancies were less likely to be referred to hospice than those with solid tumors (OR=0.19). Among patients with solid tumors, receiving cancer treatment in the LML lowered the odds of hospice referral (OR=0.50, p=0.043). Conclusion(s): Further research efforts are needed to investigate the role of race, insurance, cancer types, and treatments in hospice use among bigger samples of AYA patients diagnosed with cancer.
Noh H; Bui C; Mack JW
Journal of adolescent and young adult oncology
2022
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<a href="http://doi.org/10.1089/jayao.2021.0225" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0225</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>
Occupational therapy in oncology palliative care for adolescents and young adults: Perspectives of Australian occupational therapists
INTRODUCTION: Palliative Care Australia suggests current needs (emotional wellbeing, understanding of cancers impact on relationships, everyday activities, and life milestones) for adolescent and young adults in palliative care are unmet due to a lack of age-specific palliative care facilities in Australia. This includes the provision of occupational therapy that can impact these unmet needs. Although the occupational therapy role in palliative care has been documented, little is known about existing occupational therapy services or occupational needs for young people with palliative care needs. The aims of this study were to obtain occupational therapists insights of working with this population in Australia regarding (1) gaps in palliative care services for this population; (2) facilitators and challenges to providing occupational therapy for this group; and (3) perceived occupational needs of young people living with a life-limiting cancer diagnosis. METHOD(S): Using snowball sampling, an online survey was distributed to occupational therapists with experience working in palliative cancer care with adolescents and young adults. Available for 6 weeks, the survey included demographic, work history, and service delivery questions. Forced-choice questions were summarised descriptively, and content analysis was used to analyse free-text data. RESULT(S): Eleven completed surveys were returned. Overall, therapists perceived current palliative care services for this population within Australia to be lacking. Two gaps emerged: age-appropriate facilities and gaps in provision of psycho-social and occupational therapy services. Funding, lack of knowledge of the occupational therapy role, and professional confidence were highlighted as challenges to practice. Main occupational needs related to maintenance of as "normal" a life as possible: maintaining occupational role engagement, continuing connection with others, and being heard regarding their occupational needs. CONCLUSION(S): Findings suggest a need for service changes, including custom-designed facilities, improved funding, training and mentoring, to support age-appropriate and occupation-focussed care for the young person in cancer-specific palliative care. Copyright © 2021 Occupational Therapy Australia.
Wallis A; Meredith P; Stanley M
Australian occupational therapy journal.
2021
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<a href="http://doi.org/10.1111/1440-1630.12780" target="_blank" rel="noreferrer noopener">10.1111/1440-1630.12780</a>
Multidisciplinary Clinician Perspectives on Embedded Palliative Care Models in Pediatric Cancer
CONTEXT: Integration of palliative care (PC) into pediatric cancer care is considered best practice by national oncology and pediatric organizations. Optimal strategies for PC integration remain understudied, although growing evidence suggests that embedded models improve quality of care and quality of life for patients and families. OBJECTIVES: To describe the perspectives and preferences of multidisciplinary clinicians regarding ideal models for PC integration in pediatric cancer care; to introduce clinicians to the theoretical concept of an embedded care model; to empower clinicians in co-design of a new institutional model through collaborative discussion of anticipated benefits and challenges of embedded model implementation. METHODS: Trained facilitators conducted 24 focus groups, stratified by discipline and care team. Focus groups were audio-recorded and transcribed for inductive content analysis using MAXQDA software. RESULTS: 174 clinicians participated (25 physicians, 30 advanced practice providers [APPs], 70 nurses, 49 psychosocial clinicians). Clinicians across disciplines verbalized that an embedded PC model would improve access to PC; however, identified benefits and challenges varied by discipline. Benefits included earlier integration of PC (physicians, APPs), normalization of PC as an integral aspect of care by patients/families (nurses, psychosocial), collaboration (physicians, psychosocial clinicians), and communication (APPs, psychosocial). Anticipated challenges included inadequate resources and physician resistance (physicians, APPs, nurses) and multidisciplinary role confusion (APPs, nurses, psychosocial). CONCLUSION: Pediatric clinicians recognize the potential value of an embedded PC model. Although some concepts overlapped, multidisciplinary clinicians offered unique beliefs, highlighting the importance of including representative perspectives to ensure that pediatric PC models align with priorities of diverse stakeholders.
Salek M; Woods C; Gattas M; Gattuso JS; Mandrell B; Baker JN; Kaye EC
Journal of Pain and Symptom Management
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.jpainsymman.2022.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.019</a>
Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology
BACKGROUND: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. METHODS: The aim of this project was to enhance the healthcare teams' understanding of bereaved parents' end-of-life care preferences through narratives. Bereaved parents were recruited from our institution's Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child's end-of-life care. Narratives were analyzed using standard qualitative methods. RESULTS: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child's voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved. CONCLUSION: Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child's end of life and to remain in contact with them after death.
Robert R; Razvi S; Triche LL; Bruera E; Moody KM
Children (Basel)
2022
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<a href="http://doi.org/10.3390/children9020274" target="_blank" rel="noreferrer noopener">10.3390/children9020274</a>
Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer
PURPOSE: Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home. METHODS: Between December 2018 and January 2021, we conducted in-depth interviews with AYAs (age 12-39 years) with stage IV or recurrent cancer, family caregivers including bereaved caregivers, and clinicians of AYAs with cancer. Patients were asked about their priorities for care including location of death, caregivers were asked what was most important in the care of their AYA family member, and clinicians were asked to reflect on priorities identified through caring for AYAs. Directed content analysis was applied to interview data, and themes regarding location of death were developed. RESULTS: Eighty individuals (23 AYAs, 28 caregivers, and 29 clinicians) participated in interviews. Most AYAs and caregivers preferred a home death. However, some AYAs and caregivers opted for a hospital death to alleviate caregiver burden or protect siblings from the perceived trauma of witnessing a home death. Lack of adequate services to manage intractable symptoms at home and insufficient caregiver support led some AYAs/caregivers to opt for hospital death despite a preference for home death. Participants acknowledged the value of hospice while also pointing out its limitations in attaining a home death. CONCLUSION: Although most AYAs prefer to die at home, this preference is not always achieved. Robust home-based services for effective symptom management and caregiver support are needed to close the gap between preferred and actual location of death for AYAs.
Odejide OO; Fisher L; Kushi LH; Chao CR; Vega B; Rodrigues G; Josephs I; Brock KE; Buchanan S; Casperson M; Cooper RM; Fasciano KM; Kolevska T; Lakin JR; Lefebvre A; Schwartz CM; Shalman DM; Wall CB; Wiener L; Altschuler A; Mack JW
JCO Oncology Practice
2022
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<a href="http://doi.org/10.1001/jamanetworkopen.2021.21888" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.21888</a>
Explore the Bereavement Needs of Families of Children With Cancer From the Perspective of Health Caregivers: A Qualitative Study
Introduction: The experience of bereavement is associated with severe physical, psychological, social and spiritual reactions in the parents of children with cancer. Because of that, the families of these children need to receive bereavement services. The aim of this study was to explore the bereavement needs of families of children with cancer from the perspective of health caregiver as people who have a close relationship with the child and the family. Methods: This qualitative descriptive study design in. In total 15 semi-structured interviews were conducted using a purposive sampling in 2018. Interviews were recorded and transcribed and conventional content analysis was used to analysis the data. The Trustworthiness of the data were assessed according to the criteria of Lincoln and Guba. Results: From the data analysis, needs of the bereaved family were categorized in three dimension including "achieving peace," "Abandoned family access to care," and "continuing care." The category of "achieving peace" includes spiritual and existential support, companionship with the family, contact with other bereaved families, support in passing and accepting the bereaved and continuing empathetic communication with the family, the category "Abandoned family access to care" includes the promotion of family self-control, awareness of end-of-life care to the family, and the category of "continuing care," includes formal and informal family care and individualized care. Conclusion: It is necessary for the care team to pay special focus to family considering the needs of the family about the death of the patient and the challenges of the family bereavement period. It is recommended that members of the health care team should be trained in assessing family needs, identifying risks of adverse outcomes, continuing care, and providing resources during bereavement. The needs of the bereaved family should also be addressed in their care plan.
Pakseresht M; Rassouli M; Rejeh N; Rostami S; Barasteh S; Molavynejad S
Frontiers in Psychology
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/10.3389/fpsyg.2021.750838" target="_blank" rel="noreferrer noopener">10.3389/fpsyg.2021.750838</a>
Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study
Context: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness. Objective(s): To identify barriers to effective symptom management in pediatric advanced cancer. Method(s): Using a qualitative multiple case study we refined the Pediatric Quality of Life and Evaluation of Symptoms Technology Response to the Pediatric Oncology Symptom Experience (PediQUEST Response), a pediatric palliative care (PPC) intervention. Twenty-three children aged >=2 years old with advanced cancer, their parents and primary and PPC clinicians were enrolled. Children and parents reported symptoms weekly over 4-months using the Memorial Symptom Assessment Scale (MSAS) administered by an electronic system (PediQUEST). When symptom distress episodes (SDEs) were reported (MSAS symptom score >=33) we studied symptom management processes using interviews of family members/clinicians, and chart abstractions. Data were coded and analyzed using grounded theory and NVivo software. Result(s): Children reported 308 SDEs within 193 surveys and parents 529 SDEs in 165 surveys administered. We conducted 85 and 88 interviews with families and clinicians respectively. While we confirmed the presence of known barriers, we identified a prominent theme, that symptoms were "normalized." Patients, parents, and all clinicians, including PPC specialists, got accustomed to high symptom burden and lacked expectations that distress could be alleviated. We defined "normalization of symptoms," as the process by which symptom related suffering is appraised as unavoidable. Conclusion(s): Normalization of symptoms is a pervasive barrier enacted by all involved in caring for children with advanced cancer. Strategies to overcome normalization are critical to ease child distress. Copyright © 2021 American Academy of Hospice and Palliative Medicine
Requena ML; Avery M; Feraco AM; Uzal LG; Wolfe J; Dussel V
Journal of Pain and Symptom Management
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.jpainsymman.2021.12.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.12.009</a>
Interdisciplinary Perspectives on an Embedded Palliative Oncology Model in Pediatric Cancer Care
Outcomes: 1. Compare and contrast perspectives of multidisciplinary providers in regard to an embedded model of pediatric palliative care (PC) in routine cancer care 2. Propose an embedded PC model of care in the learner's own practice setting Original Research Background: Integration of pediatric palliative care (PPC) into cancer care is recognized as best practice by oncology and pediatrics organizations. However, optimal strategies for integration of PPC within cancer care remain understudied despite growing evidence that suggests embedded models have the potential to improve quality of care. Research Objectives: Embedded models rely on partnerships with interdisciplinary clinicians, whose perspectives regarding this model are not well known. Method(s): We conducted focus groups in an academic pediatric cancer center with groups stratified by discipline (physicians, advance practice providers [APPs], nurses, psychosocial) and by care team (hematologic malignancy, bone marrow transplant, solid tumor, brain tumor). Focus groups were led by trained facilitators and audio-recorded for inductive content analysis to identify clinician perspectives regarding embedded PPC models. Result(s): Across 25 focus groups, 25 physicians, 30 APPs, 71 nurses, and 49 psychosocial clinicians participated. Analysis yielded 3 broad themes: model of care delivery, teamwork, and expectation of responsibilities. Although clinicians identified overlapping themes related to ideal PPC provision and the benefits and challenges inherent to an embedded model, some identified priorities and concepts varied by discipline. Focus groups in all disciplines believed that an embedded PC model would improve access to PPC. Other benefits named included earlier integration (physician, APP), normalization of PPC as an integral aspect of care by patients and families (nurse, psychosocial), collaboration (physician, psychosocial), and communication (APP, psychosocial). Anticipated challenges included inadequate resources (physician, APP, nurse), physician resistance (physician, APP, nurse), and interdisciplinary role confusion (APP, nurse, psychosocial). Conclusion(s): Pediatric oncology interdisciplinary providers recognize the potential value of an embedded model for integration of PPC in the care of children with cancer. Although some concepts and themes overlapped, interdisciplinary clinicians also offered unique perspectives and potential barriers. Implications for Research, Policy, or Practice: These findings highlight the importance of integrating interdisciplinary perspectives when developing an embedded care model to align with priorities of diverse stakeholders. Copyright © 2022
Salek M; Woods C; Baker J; Kaye E
Journal of Pain and Symptom Management
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.jpainsymman.2022.02.083" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.083</a>
Listening to Parents of Children With Cancer-Between Life and its end
This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured interviews in an oncology department of an Israeli hospital. Data were analyzed using a phenomenological thematic analysis approach. The findings that emerged revealed: (a) the cultural aspect of the Israeli society of the importance of family and of the children within the family, (b) the parents' unique way of coping, of holding a dual awareness, and (c) emphasizing that hope and support are necessary components for parents' ability to cope with their child having terminal cancer, at the EOL. A number of important practical recommendations can be made for professionals treating child facing the EOL with cancer and their families. First, understanding the "double awareness" developed by parents of children facing with EOL cancer. Second, there is significance to bring the medical staff closer to the patient's bed, which is to say, training medical staff in open communication on this subject. Third, it is recommended to construct intervention programs that would accompany the whole family and not just the parents. Fourth, there is some necessity to train healthcare teams working in pediatric oncology wards and providing palliative care, to teach them how to help people hold on hope and to evaluate hope in parents of children at the EOL.
Manor-Binyamini I; Schreiber-Divon M
Journal of Patient Experience
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/10.1177/23743735221106589" target="_blank" rel="noreferrer noopener">10.1177/23743735221106589</a>
Location of death and hospice use in children with cancer varies by type of health insurance
BACKGROUND: Disparities in end-of-life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization. METHODS: We used MarketScan - a nationally representative dataset with Medicaid and commercial claims to conduct a retrospective observational study of children with cancer who died between 2011 and 2017 at age ≤21 years. We examined rates of (a) home death, (b) hospice utilization, (c) and medically intense interventions in the last 30 days (e.g., intubation). RESULTS: Of the 1492 children in the cohort, 44% had Medicaid and 56% commercial insurance; 71% carried a solid tumor diagnosis, and 37% were between the ages of 15 and 21 years at the time of death. Forty percent died at home; children with Medicaid were less likely to die at home (relative risk [RR] = 0.82, 95% confidence interval [CI]: 0.73-0.92; reference: commercial). Forty-five percent enrolled in hospice, for a median of 2 days. Hospice enrollment rates did not vary with insurance. However, children with Medicaid spent less time enrolled (incidence rate ratio [IRR] = 0.22, 95% CI: 0.17-0.27). Among children with Medicaid, Black children were less likely to die at home (RR = 0.69, 95% CI: 0.52-0.92) and enroll on hospice (RR = 0.71, 95% CI: 0.55-0.91) than non-Hispanic White children. Medically intense interventions did not vary with insurance or race. CONCLUSION: Only 40% of children with cancer die at home, and the duration of hospice enrollment is short. EOL care varies significantly with insurance. It is imperative that we determine if these patterns and disparities represent EOL preferences, provider biases, or differences in quality or availability of hospice.
Johnston EE; Davis ES; Bhatia S; Kenzik K
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.29521" target="_blank" rel="noreferrer noopener">10.1002/pbc.29521</a>
AquaScouts: ePROs Implemented as a Serious Game for Children With Cancer to Support Palliative Care
MyPal is a European initiative focusing on the use of the electronic patient reported outcome (ePRO) measures to enhance patient engagement in palliative cancer care via digital self-reporting palliative care for patients with cancer. As a part of its approach, MyPal also focuses on pediatric patients, implementing a specific digital health platform including a serious game to facilitate the reporting of the symptoms and overall status regarding their quality of life (QoL). To this end, the reduction of psychological burden related to frequent reporting, a.k.a. as "reporting fatigue" has been identified as a priority. In this study, we present the MyPal-CHILD platform, emphasizing on the serious game named AquaScouts and its key design decisions, while also emphasizing on the respective challenges. More specifically, we provide insights on the participatory design approach applied during the design of the platform and the high-level goals defined based on end-user input. In addition, the validation process applied before the use of the platform under real-world conditions is also presented. Finally, we discuss a number of challenges and the prospects of deploying eHealth interventions to support palliative care.
Hoffmann S; Schraut R; Kröll T; Scholz W; Belova T; Erhardt J; Gollmer D; Mauck C; Zacharioudakis G; Meyerheim M; Bonotis P; Kakalou C; Chatzimina M; Karamanidou C; Sander A; Didi J; Graf N; Natsiavas P
Frontiers in Digital Health
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/10.3389/fdgth.2021.730948" target="_blank" rel="noreferrer noopener">10.3389/fdgth.2021.730948</a>
The social and spiritual dimensions of parental experiences on end-of-life care of their child with cancer: A narrative review
OBJECTIVE: Having a child with cancer is a burdensome experience for parents. Nurses need to better understand beliefs, hopes, and values of parents to holistically support them, which may have an impact on grief and depression. Thus, the aim of this paper was to highlight the social and spiritual dimensions of parental experiences on end-of-life care of their child with cancer. METHOD(S): A narrative literature review was conducted by systematically searching databases (CINAHL Complete, Academic Search Elite, MEDLINE) for relevant literature. The contents of included studies were critically appraised regarding their methodological quality. RESULT(S): Eleven studies were included. In terms of the social dimension, three categories emerged that are important for parents: Being a Parent, Being in Relationship with the Child, and Being in Relationship with Health Professionals. Parents tried to maintain normality and joy for their child, but also kept control over the situation. They wanted to protect their child from suffering but also felt the need to talk to them about dying. Parents had ambivalent experiences with helpful but also burdensome staff. The spiritual dimension comprised two main categories, Hope and Faith and a Unique Bond. Hope was found to be an important source of strength, while Faith was only mentioned by some parents. For parents the emotional connection with their child constituted a source of meaning as well as a foundation, on which they based their decisions on. SIGNIFICANCE OF RESULTS: A therapeutic relationship and a supportive environment can be established by healthcare professionals by noticing, encouraging the unique bond between parents and their children, as well as by reflecting and addressing the parents' challenging situation.
Job MK; Schumacher P; Muller G; Kreyer C
Palliative & supportive 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/10.1017/S1478951521001991" target="_blank" rel="noreferrer noopener">10.1017/S1478951521001991</a>
Compassionate de-escalation of life-sustaining treatments in pediatric oncology: An opportunity for palliative care and intensive care collaboration
CONTEXT: Approximately 40%-60% of deaths in the pediatric intensive care unit (PICU) are in the context of de-escalation of life-sustaining treatments (LSTs), including compassionate extubation, withdrawal of vasopressors, or other LSTs. Suffering at the end of life (EOL) is often undertreated and underrecognized. Pain and poor quality of life are common concerns amongst parents and providers at a child's EOL. Integration of palliative care (PC) may decrease suffering and improve symptom management in many clinical situations; however, few studies have described medical management and symptom burden in children with cancer in the pediatric intensive care unit (PICU) undergoing de-escalation of LSTs. METHODS: A retrospective chart review was completed for deceased pediatric oncology patients who experienced compassionate extubation and/or withdrawal of vasopressor support at EOL in the PICU. Demographics, EOL characteristics, and medication use for symptom management were abstracted. Descriptive analyses were applied. RESULTS: Charts of 43 patients treated over a 10-year period were reviewed. Most patients (69.8%) were white males who had undergone hematopoietic stem cell transplantation and experienced compassionate extubation (67.4%) and/or withdrawal of vasopressor support (44.2%). The majority (88.3%) had a physician order for scope of treatment (POST - DNaR) in place an average of 13.9 days before death. PC was consulted for all but one patient; however, in 18.6% of cases, consultations occurred on the day of death. During EOL, many patients received medications to treat or prevent respiratory distress, pain, and agitation/anxiety. Sedative medications were utilized, specifically propofol (14%), dexmedetomidine (12%), or both (44%), often with opioids and benzodiazepines. CONCLUSIONS: Pediatric oncology patients undergoing de-escalation of LSTs experience symptoms of pain, anxiety, and respiratory distress during EOL. Dexmedetomidine and propofol may help prevent and/or relieve suffering during compassionate de-escalation of LSTs. Further efforts to optimize institutional policies, education, and collaborations between pediatric intensivists and PC teams are needed.
Cuviello A; Pasli M; Hurley C; Bhatia S; Anghelescu DL; Baker JN
Frontiers in 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/10.3389/fonc.2022.1017272" target="_blank" rel="noreferrer noopener">10.3389/fonc.2022.1017272</a>
The Supportive Care Clinic: A Novel Model of Embedded Pediatric Palliative Oncology Care
CONTEXT: Pediatric palliative care (PPC) improves quality of life and end-of-life outcomes for children with cancer, but often occurs late in the disease course. The Supportive Care Clinic (SCC) was launched in 2017 to expand outpatient PPC access. OBJECTIVES: To describe the inaugural four years (2017-2021) of an academic, consultative, embedded SCC within pediatric oncology. METHODS: Descriptive statistics (demographic, disease, treatment, visit, and end-of-life) and change over time were calculated. RESULTS: During the first four years, 248 patients (51.6% male; 58.1% White; 35.5% Black; 13.7% Hispanic/Latino) were seen in SCC, totaling 1,143 clinic visits (median 4, IQR 2,6), including 248 consultations and 895 follow-up visits. Clinic visits grew nearly 300% from year one to four. Primary diagnoses were central nervous system tumor (41.9%), solid tumor (37.5%), and leukemia/lymphoma (17.3%). The first point of PPC contact became SCC (70.6%) for most referred patients. Among the 136 deceased patients (54.8%), 77.9% had a do-not-resuscitate or Physician Orders for Life Sustaining Treatment in place, and 72.8% received hospice care. When known (n = 112), 89.3% died in their preferred location. The time from SCC consultation to death increased from 74 to 226 days over the four years (P < 0.0001). The proportion of SCC consultations that occurred greater than 90 days from death increased from 39.1% in year one to 85.0% in year four. CONCLUSION: Embedded SCC clinics can be successful, achieve steady growth, improve referrals and timing of PPC, and enhance end-of-life care for children with cancer. Large pediatric cancer centers should include SCC outpatient services.
Brock KE; DeGroote NP; Roche A; Lee A; Wasilewski K
Journal of Pain and Symptom Management
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.jpainsymman.2022.05.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.007</a>
Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer
BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.
Cho E; Dietrich MS; Friedman DL; Gilmer MJ; Gerhardt CA; Given BA; Hendricks-Ferguson VL; Hinds PS; Akard TF
American Journal of Hospice and Palliative Medicine
2022
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<a href="http://doi.org/10.1177/10499091221100809" target="_blank" rel="noreferrer noopener">10.1177/10499091221100809</a>
Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences: A Randomized Clinical Trial
The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined.To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences.This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022.Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information.Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis.A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (β [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69).Results of this trial showed that, for those who received the FACE-TC intervention, the families’ knowledge of their adolescents’ end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity–based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study.ClinicalTrials.gov Identifier: NCT02693665
Needle JS; Friebert S; Thompkins JD; Grossoehme DH; Baker JN; Jiang J; Wang J; Lyon ME
JAMA Network Open
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/10.1001/jamanetworkopen.2022.20696" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.20696</a>
Impact of Specialized Versus General Palliative Care on the Intensity of Medical Care at the End of Life in Adolescents and Young Adults with Cancer: A Population-Based Cohort Study
Outcomes: 1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk for reduced access to specialized palliative care Original Research Background: A high proportion of adolescents and young adults (AYAs) with cancer (ages 15-39 years) receive high-intensity (HI) medical care at the end of life (EOL). We have previously shown that palliative care (PC) involvement in this population is associated with lower risk of HI-EOL care. Whether this association differs by specialized or general PC (SPC, GPC) is unknown. Research Objectives: To evaluate the prevalence and predictors of SPC in AYAs with cancer and to evaluate the impact of SPC versus GPC on the intensity of EOL care for AYAs. Method(s): A decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada was assembled from registries and linked to population-based healthcare data. Based on prior studies, the primary composite measure HI-EOL care included any of intravenous chemotherapy <14 days from death, >1 ED visit, and >1 hospitalization or ICU admission <30 days from death. SPC and GPC were defined via previously validated algorithms based on physician billing codes (SPC if practice consisted of >=50% PC-specific billing codes and GPC if PC-specific billing codes were between 10% and 50%). Result(s): Of 7,122 AYAs, 2,140 (30%) received SPC and 942 (13.2%) received GPC. AYAs with hematologic malignancies, male AYAs, and rural AYAs were least likely to have access to SPC. No PC involvement compared to GPC was associated with higher odds of receiving HI-EOL care (OR 1.5; 95% CI, 1.3-1.8; P <.001). However, SPC was associated with the lowest risk of HI-EOL care (OR vs GPC 0.8; 95% CI, 0.7-0.9; P = 0.007). SPC was also associated with decreased odds of ICU admission compared with GPC (OR 0.7; 95% CI, 0.5-0.9; P = 0.006). Conclusion(s): SPC is associated with a lower risk of HI-EOL care in AYAs with cancer as compared to GPC. However, access to SPC remains a challenge. Implications for Research, Policy, or Practice: Our study supports the widespread provision of SPC to AYAs with cancer. Copyright © 2022
Kassam A; Gupta A; Rapoport A; Srikanthan A; Sutradhar R; Luo J; Widger K; Wolfe J; Earle C; Gupta S
Journal of Pain and Symptom Management
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.jpainsymman.2022.02.084" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.084</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
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<a href="http://doi.org/10.1002/pbc.29533" target="_blank" rel="noreferrer noopener">10.1002/pbc.29533</a>
Decision-Making at End-of-Life for Children With Cancer: A Systematic Review and Meta-Bioethical Analysis
Background: Evidence shows that medical education includes a variety of basic and clinical skills. Ethical and human values are not typically considered in medical school curricula, and this is evident in medical practice in certain scenarios such as decision-making at pediatric cancer patients' end of life. Method(s): This study explores a bioethical approach to address complex decision-making at the end of life in children and adolescents with cancer. We are a cross-functional group of scientists from several academic disciplines who conducted a systematic review of the literature using our newly developed meta-bioethical analysis and synthesis of findings. The search was carried out in five databases, resulting in 10 research papers. Following quality screening, seven articles were ultimately selected for further analysis. Result(s): Our focus is on the state of the art to better understand the bioethical deliberation at the end of life in pediatric oncology. Here, we report a systematic review that includes (i) classification of the screened articles by the type of decision-making they use, ii) the system values that are at the core of the decision-making at the end of life, and iii) bioethical and ethical discernment queries. We conclude with a discussion regarding the best practices of ethical discernment and decision-making at the end of life. This study highlights the need to develop more research to better understand the influence and origin of these multidimensional factors determining critical decisions that define the quality of life of patients in a highly sensitive moment. Conclusion(s): We conclude that personal aspects of the physician define their actions more than knowledge or organized structure. It is thus necessary that pediatric oncologists receive ethics and humanistic education. © Copyright © 2021 Juarez-Villegas, Altamirano-Bustamante and Zapata-Tarres.
Juarez-Villegas LE; Altamirano-Bustamante MM; Zapata-Tarres MM
Frontiers in Oncology
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/10.3389/fonc.2021.739092" target="_blank" rel="noreferrer noopener">10.3389/fonc.2021.739092</a>
Patterns of Healthcare Services Among Children With Advanced Cancer in Concurrent Hospice Care
BACKGROUND: Children with advanced cancer have access to comprehensive cancer care and hospice care if they enroll in concurrent hospice care. However, little is known about the patterns of nonhospice healthcare services used by these children. OBJECTIVE(S): The aim of this study was to examine the patterns of nonhospice healthcare services among children with cancer in concurrent hospice care. METHOD(S): This study was a retrospective cohort analysis of 2011-2013 Medicaid claims data from 862 pediatric cancer patients. Data were analyzed using descriptive statistics and latent class analysis (LCA). RESULT(S): Children used 120 388 healthcare services, including inpatient and outpatient hospital services, laboratories and x-rays, durable medical equipment, medications, and others. These services clustered into 2 classes with moderate-intensity (57.49%) and high-intensity (42.50%) healthcare service use. Children in the high-intensity cluster were more likely to reside in the South with comorbidities, mental/behavioral health conditions, and technology dependence and were less likely to have solid tumors, compared with the moderate-intensity group. CONCLUSION(S): Nonhospice healthcare services clustered together in 2 distinct classes, providing critical insight into the complexity of the healthcare use among children with cancer in concurrent hospice care. IMPLICATIONS FOR PRACTICE: Understanding that pediatric patients in concurrent care may have different healthcare service patterns may assist oncology nurses caring for children with advanced cancer. These findings also have policy implications. Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.
Svynarenko R; Lindley LC; Mooney-Doyle K; Mendola A; Naumann WC; Mack JW
Cancer Nursing
2022
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<a href="http://doi.org/10.1097/NCC.0000000000001067" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000001067</a>
Pediatric Palliative Screening Scale in pediatric cancer patients: A qualitative study approach
Ugaz C; Ortiz I; Soto G; Morales R; Vasquez L
Pediatric Blood and Cancer
2021
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<a href="http://doi.org/10.1002/pbc.29249" target="_blank" rel="noreferrer noopener">10.1002/pbc.29249</a>
Charting a path to high-quality end-of-life care for children with cancer
Ananth P; Wolfe J; Johnston EE
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/cncr.34419" target="_blank" rel="noreferrer noopener">10.1002/cncr.34419</a>
Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool
BACKGROUND: Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients' QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population. METHODS: To identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents' viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices. RESULTS: Apart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version. CONCLUSIONS: Advance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.
Avoine-Blondin J; Dumont É; Marquis MA; Duval M; Sultan S
BMC 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/10.1186/s12904-022-01025-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01025-z</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
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<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>
Location of end-of-life care of children with cancer: A systematic review of parent experiences
Objective: To synthesize existing qualitative research exploring the experiences of parents caring for children with cancer during the end-of-life phase, and the factors that influence parental decision-making when choosing the location of end-of-life care and death for their child. Result(s): This review included 15 studies of 460 parents of 333 children and adolescents who died from progressive cancer. Where reported, the majority (58%) of children died at home or in a hospital (39%), with only a small fraction dying in a hospice. Factors impacting decision-making for the location of care included the quality of communication and the quality of care available. Themes related to choosing home for end-of-life care and death included honoring the child's wishes, the familiarity of home, and parents' desire to be their child's primary carer. Preference for the location of death in the hospital included trust in hospital staff, practical logistics, and the safety of the hospital environment. Copyright © 2022 Wiley Periodicals LLC.
Noyes M; Herbert A; Moloney S; Irving H; Bradford N
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/https://doi.org/10.1002/pbc.29621" target="_blank" rel="noreferrer noopener">https://doi.org/10.1002/pbc.29621</a>
Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer
BACKGROUND: Social workers (SWs) and chaplains are trained to support families facing challenges associated with critical illness and potential end-of-life issues. Little is known about how parents view SW/chaplain involvement in care for critically ill children with cancer. METHODS: We studied parent perceptions of SW/chaplain involvement in care for pediatric intensive care unit (PICU) patients with cancer or who had a hematopoietic cell transplant. English- and Spanish-speaking parents completed surveys within 7 days of PICU admission and at discharge. Some parents participated in an optional interview. RESULTS: Twenty-four parents of 18 patients completed both surveys, and six parents were interviewed. Of the survey respondents, 66.7% and 75% interacted with SWs or chaplains, respectively. Most parents described SW/chaplain interactions as helpful (81.3% and 72.2%, respectively), but few reported their help with decision making (18.8% and 12.4%, respectively). Parents described SW/chaplain roles related to emotional, spiritual, instrumental, and holistic support. Few parents expressed awareness about SW/chaplain interactions with other healthcare team members. CONCLUSIONS: Future work is needed to determine SWs'/chaplains' contributions to and impact on parental decision making, improve parent awareness about SW/chaplain roles and engagement with the healthcare team, and understand why some PICU parents do not interact with SWs/chaplains.
Michelson KN; Arenson M; Charleston E; Clayman ML; Brazg T; Rychlik K; Rosenberg AR; Frader J
Children (Basel)
2022
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<a href="http://doi.org/10.3390/children9091287" target="_blank" rel="noreferrer noopener">10.3390/children9091287</a>
Pediatric palliative care for children with cancer: a concept analysis using Rodgers' evolutionary approach
BACKGROUND: Providing access to pediatric palliative care (PPC) for children living with a serious illness, such as cancer, is of critical importance, although this specialized intervention, as a novel concept, still seems vague and complicated. The present study analyzed the concept of PPC for children with cancer. METHODS: Rodgers' evolutionary method was employed for the concept analysis. Articles on PPC, particularly those for children suffering from cancer, published between 2010 and 2021 were searched in valid academic research databases. The inclusion criteria for the full-text articles were based on the characteristics, antecedents, and consequences of PPC for children with cancer. RESULTS: In total, 19 relevant articles were selected and then reviewed and analyzed after applying the inclusion criteria and the final sampling. The analysis of the concept of PPC for children affected with cancer revealed four characteristics, including "PPC as holistic and integrated care", "PPC as patient- and family-centered care", "PPC as early-start continuous care", and "PPC as interdisciplinary and team-based care". Some effective factors could also act as antecedents for this concept, i.e., health care providers' training and expertise as well as human resources and financing. Moreover, improved quality of life, symptom reduction, and coordination between patient care and family support were among the PPC consequences for such children. CONCLUSIONS: The study results demonstrated that delivering PPC to children with cancer demanded a comprehensive view of its various dimensions. Furthermore, numerous factors need to be delineated for its accurate and complete implementation.
Vasli P; Karami M; AsadiParvar-Masouleh H
World Journal of Pediatrics
2022
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<a href="http://doi.org/10.1007/s12519-022-00600-x" target="_blank" rel="noreferrer noopener">10.1007/s12519-022-00600-x</a>
Health-Care Workers' Understanding of and Barriers to Palliative Care Services to Aboriginal Children with Cancer
AIM: To identify barriers in the understanding and provision of optimal palliative care to Aboriginal children with cancer by health-care staff, with the aim to support education and training that highlights the importance of cultural, physical and spiritual needs at end-of-life. METHODS: Medical and nursing staff working in Departments of Palliative Care, Metabolic Medicine and Haematology/Oncology at the Women's and Children's Hospital in Adelaide, South Australia, were asked to complete a survey regarding their experience in treating Aboriginal children receiving palliative care. The survey addressed the understanding of cultural and spiritual needs, barriers encountered and opinions for improved services. RESULTS: The survey was completed by 34 participants. 91.2% (n = 31) had provided care to Aboriginal children who were receiving care during palliative and end-of-life phases for a diagnosis of cancer, 58.8% (n = 20) of which had supported children returning home. Only 23.5% of participants reported comfort in communicating about spiritual/cultural needs with patients and families. There was minimal previous exposure to education (17.6%), yet all participants were interested in future education opportunities. CONCLUSION: This study highlights a paucity in understanding and comfort among health-care workers in treating Aboriginal children at end-of-life. New models, including the training of staff, educational resources and involvement of Aboriginal health-care workers, may improve care.
Jessop S; Phelan C
Journal of Paediatrics and Child Health
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/10.1111/jpc.16000" target="_blank" rel="noreferrer noopener">10.1111/jpc.16000</a>
The Lived Experiences With Hope From Adolescents and Young Adults Who Have Advanced Cancer
Objectives 1. Describe the concept of hope based on perspectives of AYAs who experienced advanced cancer. 2. Differentiate the role hope has for AYAs before, during, and after experiencing cancer. Context In clinical care, addressing patients’ hopes may stimulate conversations about their goals, concerns, and values; helping clinicians focus on patient-centered interventions to support the patient's psychological, spiritual, and existential needs. Methods This descriptive qualitative study used a phenomenology informed approach to depict experiences with hope by AYAs who have advanced cancer. The participants completed two semi-structured audio-recorded virtual interviews and co-created narratives and drawings about the role of hope before, during, and after experiencing cancer. Thematic analyses were performed on the narratives. Results Fifteen AYAs aged 12–21 years were recruited from an academic medical center and an online non-profit organization. During data collection participants had either completed treatments (60%), or were actively receiving treatments (40%). Approximately 67% of the sample experienced at least one relapse. A main theme identified from the narratives was Transitions of Hope. Participants described differences in their hope before and after experiencing cancer. Participants who experienced a relapse reported their past experiences helped them build hope during their relapse. Participants described a new sense of purpose after experiencing cancer, such as starting a non-profit organization, giving back to others, doing “what I'm passionate about”, and honoring the legacies of others. Conclusion Transitions in the role of hope occurred over time, becoming a source of mental sustenance during cancer treatment, and a source of altruism after experiencing cancer. This study adds to the understanding of hope for AYAs who have advanced cancer.
Bennett CR; Coats H; Hendricks-Ferguson VL; Gauthier K; Sousa K
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2021.11.016" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.11.016</a>