Upping my game as a parent: Attributed gains in participating in a cancer parenting program for child-rearing parents with advanced cancer
advanced cancer; child adjustment; parental cancer; pilot feasibility study
OBJECTIVES: The objective of this study was to describe in the words of child-rearing parents with incurable cancer, what they had gained or thought about as a result of participating in a five-session, scripted, telephone-delivered psycho-educational parenting intervention, the Enhancing Connections Program in Palliative Care. METHOD(S): A total of 26 parents completed the program. Parents' responses were audio-recorded and transcribed verbatim and verified for accuracy. The analysis proceeded through four steps: unitizing, coding into categories, defining categories, and formation of a core construct that explained parents' attributed gains. Trustworthiness of study results was protected by coding to consensus, formal peer debriefing, and maintaining an audit trail. RESULT(S): Although 50% reached or exceeded clinical cutoff scores on anxiety and 42% reached or exceeded clinical cutoff scores on depressed mood, parents extensively elaborated what they gained. Results revealed six categories of competencies they attributed to their participation in the program: (1) being ready for a conversation about my cancer, (2) bringing things out in the open, (3) listening better to my child, (4) getting my child to open up, (5) not getting in my child's way, and (6) changing my parenting. CONCLUSION(S): Despite an extensive symptom burden, parents with incurable cancer attributed major gains from a brief, fully scripted, cancer parenting communication intervention. A manualized telephone-delivered educational counseling program for symptomatic parents with incurable cancer has the potential to augment competencies for parents as they assist their children manage the cancer experience.
Zahlis E H; Shands M E; Lewis F M
Palliative & supportive 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/10.1017/s1478951520000103" target="_blank" rel="noreferrer noopener">10.1017/s1478951520000103</a>
Supporting the Decision Making of Children With Cancer: A Meta-synthesis
children; cancer; systematic review; decision making
Background: Recently, awareness of children's decision making has increased in an effort to enhance palliative care. However, the conceptual framework for decision making among children with cancer remains unclear. Aims: We clarified the decision-making process of children with cancer regarding their care, treatment, and support from family and health care professionals, and identified their needs and preferences. Design: We used metaethnography to conduct a metasynthesis of relevant studies. Data sources: We searched PubMed, EMBASE, PsycINFO, MEDLINE, and CINAHL. This report was prepared in accordance with the PRISMA statement. Results: Of the 7,237 retrieved studies, 27 met our inclusion criteria. Four themes emerged that reflected the decision-making process of children with cancer: (a) facing changes brought about by a health threat, (b) preparing for action, (c) asserting one's choice, and (d) internal and external influences. Conclusion: Children with cancer initially undergo a decision-making process. Respecting children's preferences, values, and emotions may help build trusting relationships and promote their decision-making capability. Future research should focus on children's emotions, cognition, development, and interactions with parents and health care professionals.
Yamaji N; Suto M; Takemoto Y; Suzuki D; Lopes K D S; Ota E
Journal of Pediatric Oncology Nursing
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/10.1177/1043454220919711" target="_blank" rel="noreferrer noopener">10.1177/1043454220919711</a>
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Pediatric Blood and Cancer
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/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</a>
Advances in pediatric psychooncology
child; human; palliative therapy; adult; childhood cancer; review; young adult; sibling; attention; distress syndrome; outcome assessment; cancer patient; infant; psychosocial care; bereavement; cancer center; psycho-oncology; survivorship; patient reported outcome; chimeric antigen receptor T-cell immunotherapy; evidence based practice center; hereditary tumor syndrome; toddler
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of patient-reported outcomes, evidence-based interventions, survivorship, palliative care and bereavement.Recent findingsAlthough attention to the psychosocial needs of the child and family is increasingly recognized as an essential element of care for children with cancer, implementing evidence-based care remains suboptimal. Recent efforts have focused on utilizing technology to improve the reach of these interventions and to enhance engagement with special populations, such as adolescents and young adults. Increasing data elucidate the long-term psychological and physical late effects of childhood cancer survivorship and the impact of cancer on siblings and the family. Gaps in clinical care and important directions for future research include the needs of infants and toddlers, overlooked minorities, and patients with hereditary tumor predisposition syndromes, and attention to the psychosocial impact of exciting new treatments, such as autologous chimeric antigen receptor (CAR) T-cell therapy.SummaryThe evidence base for the psychosocial standards of care for children with cancer and their families continues to grow, but more work is needed to successfully implement these standards across pediatric cancer centers.
Wiener L; Devine K A; Thompson A L
Current Opinion in Pediatrics
2020
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<a href="http://doi.org/10.1097/MOP.0000000000000851" target="_blank" rel="noreferrer noopener">10.1097/MOP.0000000000000851</a>
Palliative care considerations and practices for adolescents and young adults with cancer
adolescents; cancer; oncology; young adults; pediatric palliative care; practice considerations
The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even more important to recognize, acknowledge, and address in AYAs with life-threatening cancer receiving palliative care. This review highlights important factors such as psychosocial development, cultural considerations, and support structure, which should be considered when providing palliative care to AYAs with cancer during the various stages of care: introduction of palliative care; symptom management; advanced care planning (ACP); end-of-life (EOL) care; and bereavement. Copyright © 2020 Wiley Periodicals LLC
Upshaw N C; Roche A; Gleditsch K; Connelly E; Wasilewski-Masker K; Brock K E
Pediatric Blood and Cancer
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/10.1002/pbc.28781" target="_blank" rel="noreferrer noopener">10.1002/pbc.28781</a>
Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review
palliative care; child; adolescent; hospice care; terminal care; neoplasms; systematic review
Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim(s): To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design(s): A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000-2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Result(s): An evidence base of mainly low- and moderate-quality studies (n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children's symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion(s): Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children's views, and research is needed to determine whether specialist input improves quality of life. Copyright © The Author(s) 2020.
Taylor J; Booth A; Beresford B; Phillips B; Wright K; Fraser L
Palliative Medicine
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/10.1177/0269216320908490" target="_blank" rel="noreferrer noopener">10.1177/0269216320908490</a>
Defining a "Good Death" in Pediatric Oncology: A Mixed Methods Study of Healthcare Providers
palliative care; cancer; qualitative; adolescent and young adult; interdisciplinary
Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider "best" practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (≤10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a "good" death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with ≤10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of "good" pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education.
Taylor M R; Barton K S; Kingsley J M; Heunis J; Rosenberg A R
Children (Basel)
2020
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<a href="http://doi.org/10.3390/children7080086" target="_blank" rel="noreferrer noopener">10.3390/children7080086</a>
The COVID-19 pandemic: A rapid global response for children with cancer from SIOP, COG, SIOP-E, SIOP-PODC, IPSO, PROS, CCI, and St Jude Global
Humans; Child; pediatrics; childhood cancer; Pediatrics; Disease Management; Medical Oncology; Consensus; Societies; Medical; retinoblastoma; acute lymphoblastic leukemia; COVID-19; SARS-CoV-2; Betacoronavirus; Pandemics; Pneumonia; Burkitt lymphoma; Coronavirus Infections/*epidemiology; Neoplasms/complications/diagnosis/*therapy; Viral/*epidemiology; Hodgkin lymphoma; low-grade glioma; nephroblastoma; WHO Global Initiative on Childhood Cancer; Wilms tumor
The COVID-19 pandemic is one of the most serious global challenges to delivering affordable and equitable treatment to children with cancer we have witnessed in the last few decades. This Special Report aims to summarize general principles for continuing multidisciplinary care during the SARS-CoV-2 (COVID-19) pandemic. With contributions from the leadership of the International Society for Pediatric Oncology (SIOP), Children's Oncology Group (COG), St Jude Global program, and Childhood Cancer International, we have sought to provide a framework for healthcare teams caring for children with cancer during the pandemic. We anticipate the burden will fall particularly heavily on children, their families, and cancer services in low- and middle-income countries. Therefore, we have brought together the relevant clinical leads from SIOP Europe, COG, and SIOP-PODC (Pediatric Oncology in Developing Countries) to focus on the six most curable cancers that are part of the WHO Global Initiative in Childhood Cancer. We provide some practical advice for adapting diagnostic and treatment protocols for children with cancer during the pandemic, the measures taken to contain it (e.g., extreme social distancing), and how to prepare for the anticipated recovery period.
Sullivan M; Bouffet E; Rodriguez-Galindo C; Luna-Fineman S; Khan M S; Kearns P; Hawkins D S; Challinor J; Morrissey L; Fuchs J; Marcus K; Balduzzi A; Basset-Salom L; Caniza M; Baker J N; Kebudi R; Hessissen L; Sullivan R; Pritchard-Jones K
Pediatric Blood and Cancer
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/10.1002/pbc.28409" target="_blank" rel="noreferrer noopener">10.1002/pbc.28409</a>
Preferred place of death in paediatric, teenage and young adult haemato-oncology patients: a retrospective review
home care; supportive care; hospice care; cancer; paediatrics; end-of-life care
OBJECTIVES: Identifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to determine where children/young people with cancer want to die and whether their preferred place of death is achieved. METHOD(S): Clinical/demographic details, including preferred and actual places of death, were recorded for 121 patients who died between 2012 and 2016 at a tertiary haematology-oncology centre. A logistic regression model was used to determine the odds of achieving the preferred place of death in patient subgroups. RESULT(S): 74 (61%) patients had a documented discussion regarding place of death preference. Where a preferred location was identified, 72% achieved it. All patients who wanted to die in the hospital (n=17) or a hospice (n=9) did, but only 58% of patients who wanted to die at home (n=40) achieved this. Of the 42% (n=17) who wanted to die at home but did not, 59% of these were due to rapid deterioration in clinical status shortly after the discussion. Having supportive treatment in the last month of life was associated with increased odds of achieving the preferred place of death versus those who were undergoing chemotherapy/radiotherapy (OR 3.19, 95%CI 1.04 to 9.80, p value=0.04). CONCLUSION(S): Where hospice/hospital was chosen as the preferred place of death, this was always achieved. Achieving home as the preferred place of death was more challenging and frequently prevented by rapid clinical deterioration. Clinicians should be encouraged to address end-of-life preferences at an early stage, with information provided adequately. Further research should explore implications of these findings on both end-of-life experience and overall service provision. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
Stilwell P; Bhatt A; Mehta K; Carter B; Bisset M; Soanes L; Shankar A
BMJ supportive & 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/10.1136/bmjspcare-2019-002005" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-002005</a>
Reconsidering early parental grief following the death of a child from cancer: a new framework for future research and bereavement support
grief; parental grief; pediatric oncology; bereavement; bereavement support
Purpose: Parents of children that die from cancer are at increased risk of significant long-term psychosocial and physical morbidities. Less, however, is known about the experience of parents early in the grief process. Currently used frameworks and instruments used to understand and assess outcomes in parents early in the grief experience are inadequate and may serve to pathologize the normal grief response. Method(s): Through review of the literature, previously conducted qualitative work, and extensive clinical experience working with bereaved parents, we developed a new framework for understanding, assessing, and studying parental grief during the first 2 years following the death of a child from cancer. Result(s): Our novel longitudinal framework hypothesizes that short- and long-term psychosocial sequalae in parents following the death of a child from cancer depend not only on pre-death factors but on the support present through the disease experience and the oscillation between protective factors and risk factors in the post-death period. We further hypothesize that protective factors and risk factors may be modifiable, making them key potential targets for supportive interventions aimed at augmenting protective factors and diminishing the effect of risk factors. Conclusion(s): This is a new framework for understanding and assessing the grief experience of parents within the first 2 years of a child's death. Many questions about how best to support parents following the death of a child from cancer remain providing ample opportunities for future research and development of interventions to improve both short- and long-term outcomes in bereaved parents. Copyright © 2019, Springer-Verlag GmbH Germany, part of Springer Nature.
Snaman J; Morris S E; Rosenberg A R; Holder R; Baker J; Wolfe J
Supportive Care in Cancer
2020
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<a href="http://doi.org/10.1007/s00520-019-05249-3" target="_blank" rel="noreferrer noopener">10.1007/s00520-019-05249-3</a>
Pediatric Palliative Care in Oncology
pediatrics; review; cancer; oncology; pediatric cancer; symptoms; communication; psychosocial concerns; spiritual considerations
Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescents, and young adults with cancer has resulted in improved outcomes in patients and their families. The field of pediatric palliative oncology-encompassing primary palliative care provided by the multidisciplinary oncology team as well as subspecialty palliative care provided by the palliative care team for more complex cases-is unique from palliative care in adults given its focus on care of the child and the larger family. In this review, we focus on advancements in the specific domains within pediatric palliative oncology care including family-centered communication, assessment and management of physical symptoms and distress, psychosocial concerns, and spiritual considerations of the patient, parents, and siblings.
Snaman J; McCarthy S; Wiener L; Wolfe J
Journal of Clinical Oncology
2020
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<a href="http://doi.org/10.1200/jco.18.02331" target="_blank" rel="noreferrer noopener">10.1200/jco.18.02331</a>
Identification of adolescents and young adults' preferences and priorities for future cancer treatment using a novel decision-making tool
pediatrics; adolescents; cancer; oncology; young adults; cancer treatment; decision-making tool
Background: Adolescents and young adults (AYAs) with cancer receive high-intensity care and experience significant symptoms at the end of life. As novel cancer-directed therapies increase, AYAs with advanced cancer may face multiple treatment options, each with unique risk/benefit profiles. To augment the AYAs' voice in the decision-making process, we developed MyPref, an adaptive conjoint analysis-based tool. Procedure: We conducted a three-staged pilot study of MyPref utilizing an exploratory intervention mixed methods design. AYAs and their identified parent or trusted person (PTP) completed MyPref and received a summary of their preferences for nine treatment-related factors. Participants later engaged in semi-structured interviews to further explore their experience with MyPref. Responses to free text questions and interviews were analyzed using qualitative techniques. Result(s): Fifteen AYAs with advanced cancer and seven PTPs participated in the pilot. While most participants identified time until cancer grows, quality of life, and side effects to be the most important factors when considering a future treatment, preferences were highly varied. Notably, MyPref-calculated preferences differed from initial rank order, and participants indicated that calculated preferences were accurate in follow-up interviews. Conclusion(s): The MyPref-calculated preferences varied by individual and differed from initial rank ordering. Additionally, there was variability in how individuals defined and prioritized treatment-related factors. This novel tool may be a useful way to engage AYAs and their PTPs in discussions around preferences for treatment and prepare AYAs for future decision making. We plan to evaluate this tool longitudinally to evaluate the impact on actual treatment decisions. Copyright © 2020 Wiley Periodicals LLC
Snaman J M; Helton G; Holder R L; Revette A; Baker J N; Wolfe J
Pediatric Blood and Cancer
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/10.1002/pbc.28755" target="_blank" rel="noreferrer noopener">10.1002/pbc.28755</a>
Communication in Pediatric Oncology: A Qualitative Study
cancer; oncology; pediatric cancer; qualitative study; communication; pediatric oncology
BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these communication functions from parental perspectives. METHODS: Semistructured interviews with 78 parents of children with cancer from 3 academic medical centers at 1 of 3 time points: treatment, survivorship, or bereavement. We analyzed interview transcripts using inductive and deductive coding. RESULTS: We identified 8 distinct functions of communication in pediatric oncology. Six of these functions are similar to previous findings from adult oncology: (1) building relationships, (2) exchanging information, (3) enabling family self-management, (4) making decisions, (5) managing uncertainty, and (6) responding to emotions. We also identified 2 functions not previously described in the adult literature: (7) providing validation and (8) supporting hope. Supporting hope manifested as emphasizing the positives, avoiding false hopes, demonstrating the intent to cure, and redirecting toward hope beyond survival. Validation manifested as reinforcing "good parenting" beliefs, empowering parents as partners and advocates, and validating concerns. Although all functions seemed to interact, building relationships appeared to provide a relational context in which all other interpersonal communication occurred. CONCLUSIONS: Parent interviews provided evidence for 8 distinct communication functions in pediatric oncology. Clinicians can use this framework to better understand and fulfill the communication needs of parents whose children have serious illness. Future work should be focused on measuring whether clinical teams are fulfilling these functions in various settings and developing interventions targeting these functions.
Sisk B A; Friedrich A; Blazin L J; Baker J N;Mack J W; DuBois J
Pediatrics
2020
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<a href="http://doi.org/10.1542/peds.2020-1193" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-1193</a>
If only I could turn back time-Regret in bereaved parents
psychosocial; qualitative study; palliative; bereavement; regret
INTRODUCTION: Regret about loss is one of the most intense types of regret experienced in life. Little is known about the bereavement regret of parents whose child has died of cancer. Although knowledge about parents' experiences after their child's death is vital for supporting these families, parents' regret is mostly hidden from the treating clinical staff. This study aimed to explore these parents' regret themes and their impact on their future lives. METHODS: An explorative questionnaire was sent to bereaved parents who lost a child to cancer. A total of 26 parents responded to the questionnaire. Data were analyzed using the constant comparative method. RESULTS: Regret experiences were shared by almost all participants. The focus of regret issues include parenting and interaction with the child, reflection on existing values, dealing with the disease, and neglecting the remaining siblings. The regret experience had an impact on prioritizing values, future lifestyle and contacts. CONCLUSIONS: Regret seems to be a general phenomenon among bereaved parents and strongly influences the grieving process, in the sense of reflecting on past experiences to reorient for future actions. As this study was explorative, it is significant toward deepening the understanding of bereavement regret in future. These insights are crucial when working with affected families to help them decide important issues they can care about now and will not regret later.
Sim C W; Heuse S; Weigel D; Kendel F
Pediatric Blood and Cancer
2020
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<a href="http://doi.org/10.1002/pbc.28265" target="_blank" rel="noreferrer noopener">10.1002/pbc.28265</a>
Healing the Hearts of Bereaved Parents: Impact of Legacy Artwork on Grief in Pediatric Oncology
grief; pediatric oncology; bereavement; Legacy-making
CONTEXT: Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention. OBJECTIVES: This study qualitatively explores the legacy-making and grief experiences of bereaved parents who participated in legacy artwork with their child before his or her death from cancer. METHODS: Twelve bereaved parents and 12 healthcare providers participated in individual semistructured interviews guided by the Dual Process Model of Grief and Continuing Bonds theory. Qualitative data were analyzed via conventional content analysis. RESULTS: Five themes emerged. Legacy artwork allows for family bonding and opens communication regarding the child's impending death; provides opportunities for parents to engage in life review and meaning-making; is often displayed in the parents' home after the child's death, and parents take comfort in using these projects to continue their bond with their deceased child; can ameliorate parents' grief after their child's death; and may reduce healthcare providers' compassion fatigue and provide them an outlet for coping with their patients' deaths. CONCLUSION: Participating in legacy artwork may result in self-reported positive outcomes for bereaved parents before and after their child's death, including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, children's hospitals may consider offering legacy artwork for children with cancer and their families.
Schaefer M R; Wagoner S T; Young M E; Madan-Swain A; Barnett M; Gray W N
Journal of Pain and Symptom Management
2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.018</a>
Paediatric oncology providers' perspectives on early integration of paediatric palliative care
end-of-life; communication; paediatric palliative care; children with cancer; interdisciplinary collaboration; paediatric oncology providers
BACKGROUND: Healthcare providers' perceptions of palliative care in children with cancer influence care management, specifically that of its early integration. Thus, it is crucial to understand the perspectives of the providers on early integration of palliative care so that measures to create informed care decisions are based on reconciling their views. AIMS: To explore the perceptions of paediatric oncology providers at the Children's Cancer Institute (CCI) in Lebanon regarding the integration of early paediatric palliative care (PPC) in the management of children with cancer. METHOD(S): A qualitative descriptive research design with focus groups was used in a leading paediatric oncology setting. FINDINGS: The thematic analysis yielded four themes: (1) healthcare providers understood palliative care as pain relief and psychological support mainly at the end of life; (2) the timing of integrating PPC is linked to end of life, advanced disease or treatment failure; (3) interdisciplinary collaboration is important for addressing patients' and families' needs effectively; and (4) communication with the child and family is one of the most difficult aspects of integrating PPC. CONCLUSION(S): This study demonstrated the perceptions of healthcare providers about early palliative care in paediatric oncology in Lebanon. It also highlighted the importance of interdisciplinary collaboration and effective communication with the child and family for better management of PPC.
Saad R; Kurdahi L B; Yazbick-Dumit N; Irani C; Muwakkit S
International journal of palliative nursing
2020
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<a href="http://doi.org/10.12968/ijpn.2020.26.3.100" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2020.26.3.100</a>
Oral and dental considerations in pediatric cancers
child; complication; human; palliative therapy; female; male; survival rate; practice guideline; childhood cancer; cancer survival; cancer therapy; review; adolescent; pain; systematic review; occupation; Medline; prevention; vulnerable population; mucosa inflammation; cancer survivor; counseling; dental procedure; cancer prevention; cancer screening; English (language); immunosuppressive treatment; mouth infection; pediatric dentist; tooth malformation
Oral health care is an integral component of interprofessional collaborative care for children and adolescents diagnosed with cancer. The current review highlights the phases of cancer therapy when dental interventions and palliative care are necessary for children diagnosed with cancer. Contemporary research and review articles pertinent to the oral and dental complications during pediatric cancer therapy and late effects in pediatric cancer survivors were identified by PubMed/MEDLINE search. Best practice guidelines set forth by specialty organizations were also included. The literature search was limited to articles published in the English language. Baseline oral and dental health assessment should occur before initiation of cancer therapy to prevent debilitating complications during the immunosuppressed phase. Counseling on preventive oral health practices is imperative during cancer treatment. Ideally, all dental treatment should be completed before initiation of immunosuppressive therapy. Palliative care and treatment for mucositis, opportunistic oral infections, pain, and other oral complications associated with cancer therapy should be provided as necessary. Survivors of childhood cancers present with unique craniofacial and dental anomalies, dependent on the type of cancer treatment and age at the time of treatment. Pediatric dentists and pediatric oncology teams work collaboratively to screen for and treat dental and oral diseases. As the survival rates of childhood cancers improve, it is essential for the dental profession to provide the individualized care necessary for this vulnerable population. The oral health profession also reinforces health practices congruent with cancer prevention and cancer screening.
Ritwik P; Chrisentery-Singleton T E
Cancer metastasis reviews
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/10.1007/s10555-020-09842-5" target="_blank" rel="noreferrer noopener">10.1007/s10555-020-09842-5</a>
An evaluation of By My Side: Peer support in written form is acceptable and useful for parents bereaved by childhood cancer
child mortality; parents; bereavement; psychosocial support systems; peer group; neoplasm/mortality*
CONTEXT: Cancer is the leading cause of non-accidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalise grief experiences and reduce parents' isolation. It is available free of charge. AIM: This project evaluated the acceptability, relevance, emotional impact and usefulness of By My Side. DESIGN: Bereaved parents and healthcare professionals provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyse the data. SETTING: /participants: We mailed a study invitation and evaluation questionnaire to parents and healthcare professionals who ordered a copy of By My Side. RESULTS: Twenty-four bereaved parents and seven healthcare professionals provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was 'just right'. 75% of parents reported that the book made them feel that their reactions to their child's death were normal/appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and healthcare professionals reported that the book provided useful information about grief. 83.4% of parents and 85.7% of healthcare professionals would recommend it to others. CONCLUSION: By My Side was acceptable and useful to bereaved parents and healthcare professionals. Results suggest that peer support in written form may help normalise aspects of grief and comfort parents bereaved by childhood cancer.
Raharjo C; Hetherington K; Donovan L; Fardell J E; Russell V; Cohn R J; Morgan N; Siddiqui J; Wakefield C E
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.2020.01.013" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.01.013</a>
The Experiences of Bereaved Parents After the Loss of a Child to Cancer: A Qualitative Metasynthesis
Child; Bereavement; Human; Qualitative Studies; Parental Attitudes; Life Experiences; Meta Synthesis; Childhood Neoplasms – Mortality; Death – Psychosocial Factors – In Infancy and Childhood; Parents – Psychosocial Factors
This study aims to synthesize qualitative evidence about the bereavement experience of parents following the death of a child due to cancer. A qualitative metasynthesis was conducted from searching five databases. The search identified 650 articles that were independently assessed by two reviewers. Thirty-one articles were selected for full-text reading and assessed for eligibility; a total of 14 articles were included in the final sample and submitted to quality appraisal. The software NVivo® was used to organize the data and support the thematic analysis procedures. Two analytical themes were constructed: (1) losing a child and facing a rupture in identity and sense of life and (2) surviving grief and reengaging in life. The grief process was dynamic, continuous, and begun before the death of the child. Fathers and mothers reacted differently to the loss and experience of grief. The loss of a child definitively changed the parents' life and caused identity crisis and loss of life's purpose. During the process of survival, parents constructed new meanings that helped them cope with grief; they used strategies that allowed them to recover their sense of purpose in life. Synthesizing the experience of bereaved parents is essential to improve the support families of children with advanced cancer receive to better cope with their suffering and loss, before and after the child's death.
Polita N B; de Montigny F; Neris R R; Alvarenga W de A; Silva-Rodrigues F M; Leite A C A B; Nascimento L C
Journal of Pediatric Oncology Nursing
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/10.1177/1043454220944059" target="_blank" rel="noreferrer noopener">10.1177/1043454220944059</a>
Factors During a Child's Illness Are Associated With Levels of Prolonged Grief Symptoms in Bereaved Mothers and Fathers
Humans; Adolescent; Child; Female; Male; Middle Aged; Sex Factors; Attitude to Death; grief; Adult; Surveys and Questionnaires; Parent-Child Relations; Mothers/psychology; Neoplasms/*psychology; Parents/*psychology; Fathers/psychology
PURPOSE: Previous research shows that bereaved parents are at an increased risk for intense and prolonged grief responses. To offer effective support to parents during a child's cancer treatment and after their child's death, more knowledge is needed about factors related to the child's illness trajectory that may contribute to prolonged grief in bereaved parents and about possible sex differences related to such factors. Therefore, we examined possible contributing factors associated with prolonged grief in cancer-bereaved mothers and fathers 1 to 5 years after their child died of cancer. METHODS: We studied data from a population-based nationwide survey, including 133 mothers and 92 fathers who had lost a child to cancer 1 to 5 years earlier, using univariable and multiple regression analyses to assess the associations between prolonged grief and possible contributing variables. RESULTS: The variables associated with lower levels of prolonged grief symptoms for mothers were being able to talk about feelings within the family (P = .00) and trusting that health care professionals made every possible effort to cure the child (P = .01). The statistically significantly associated variables for fathers were having said farewell to the deceased child in the way they wanted (P = .00) and feeling that they had received practical support from health care professionals during the child's illness trajectory (P = .01). CONCLUSION: We found factors during the illness of children with cancer that contributed to prolonged grief for parents; these were different for mothers and fathers. The results may have implications for design of family bereavement support within pediatric oncology care, including addressing the differing needs of mothers and fathers more effectively.
Pohlkamp L; Kreicbergs U; Sveen J
Journal of Clinical Oncology
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/10.1200/jco.19.01493" target="_blank" rel="noreferrer noopener">10.1200/jco.19.01493</a>
Psychopharmacology in the Pediatric Oncology and Bone Marrow Transplant Units: Antipsychotic Medications Palliate Symptoms in Children with Cancer
psycho-oncology; liaison; olanzapine; risperidone
Objectives: The present study characterized the psychiatric diagnoses and symptoms that led to the administration of antipsychotic medications in children and adolescents with cancer, and to evaluate the benefits and tolerability of these drugs in a large hospital-based pediatric hematology-oncology practice. Methods: Efficacy and adverse effects of two second-generation antipsychotics were retrospectively analyzed in 43 patients 2.9-19.6 (mean 12.1) years of age. The Clinical Global Impression-Severity (CGI-S) Scale and Improvement (CGI-I) Scale were used to evaluate psychiatric symptom severity before and following treatment, while the incidence of side effects and drug-drug interactions were collected from medical records. Results: Olanzapine was administered to 58% of patients and risperidone to 42%; the choice of drug was at the discretion of the treating psychiatrist. The common psychiatric diagnoses among these patients included adjustment disorder (37%) and medication-induced psychiatric disorders (23%). The most common psychiatric-medical symptoms included irritability/agitation (79%) and depressed mood (74%). CGI-S improved significantly (p < 0.001) between assessments, with no statistically significant difference between olanzapine- and risperidone-treated patients. CGI-I scores at reassessment indicated superiority of olanzapine as compared with risperidone. Adverse effects of treatment were mild. Conclusions: Olanzapine and risperidone can be well tolerated and ameliorate severe psychiatric-medical symptoms in children and adolescents with cancer. The potential palliative benefits of these second-generation antipsychotics (e.g., rapid onset of action, antiemesis, sedation, and appetite stimulation) increase the utility of their use in children treated in oncology and bone marrow transplant units.
Peled O; Lavan O; Stein J; Vinograd I; Yahel A; Valevski A; Weizman A; Kimmel-Tamir E; Apter A; Fennig S; Yaniv I; Bernfeld Y; Benaroya-Milshtein N
Journal of Child and Adolescent Psychopharmacology
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/10.1089/cap.2019.0164" target="_blank" rel="noreferrer noopener">10.1089/cap.2019.0164</a>
Using Patient-Reported Outcomes to Measure Symptoms in Children With Advanced Cancer
cancer; oncology; pediatric cancer; symptoms; patient-reported outcomes
BACKGROUND: Children with advanced cancer experience symptoms despite access to quality care. Symptom research has previously relied upon retrospective designs and parent proxy rather than prospective measurement with self-report. OBJECTIVE: This study evaluated the feasibility of electronic data collection in children with advanced cancer using self-report of symptom frequency, severity, and distress. METHODS: A multisite prospective cohort design was used for this study. Children who were 7 to 18 years of age and English-speaking and had a diagnosis of advanced cancer were included. Symptom frequency, severity, and level of distress were measured every 2 weeks. RESULTS: Forty-six children completed 563 of 622 (91%) administered electronic symptom assessments. Pain, fatigue, nausea, and sleeping difficulties were the most reported symptoms across all assessments and during the last 12 weeks of life. Symptoms with the highest composite scores included pain, fatigue, nausea, and sleeping difficulties. During the last 12 weeks of life, pain, fatigue, diarrhea, and sleeping difficulties had the highest composite scores. When the domains of frequency, severity, and distress were compared between groups, children reported significantly higher frequency of pain and eating difficulty during the last 12 weeks of life. CONCLUSIONS: Electronic data collection is a feasible way to evaluate the constellation of symptoms. Children with advanced cancer continue to experience physical and psychological symptoms, especially during the last 12 weeks of life despite quality care. IMPLICATIONS FOR PRACTICE: Assessment of symptom domains, including frequency, severity, and distress when symptoms are present may allow clinicians to better understand and manage symptoms of most concern to the patient.
Montgomery K E; Raybin J L; Ward J; Balian C; Gilger E; Murray P; Li Z
Cancer Nursing
2020
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<a href="http://doi.org/10.1097/ncc.0000000000000721" target="_blank" rel="noreferrer noopener">10.1097/ncc.0000000000000721</a>
Comparison of child self-report and parent proxy-report of symptoms: Results from a longitudinal symptom assessment study of children with advanced cancer
pediatric; childhood cancer; symptoms; advanced cancer
PURPOSE: This report represents a subanalysis of data from a primary study and addresses a gap in understanding the similarities and differences of symptom reporting between children with advanced cancer and their parents. The objectives of this subanalysis were to (1) compare reports of symptom prevalence, symptom burden, and symptom frequency, severity, and distress between groups of children and adolescents and their parents, and (2) describe concordance of symptom reports within individual child-parent dyads. DESIGN AND METHODS: Forty-six children with relapsed, refractory, or progressive cancer and their parents from five pediatric cancer centers prospectively reported symptoms every 2 weeks for up to 61 weeks. The abbreviated Pediatric Quality of Life and Evaluation of Symptoms Technology-Memorial Symptom Assessment Scales were used to measure symptom prevalence, frequency, severity, and distress. RESULTS: Children and parents reported pain, fatigue, nausea, and sleeping difficulties as the most frequently occurring symptoms. With the exception of shortness of breath, parents reported symptom prevalence more often than children. The differences in parent reports were statistically significant for fatigue, nausea, lack of appetite, feeling nervous, and sadness. Parents reported higher symptom burden scores compared to children for all individual symptoms except shortness of breath. Children reported higher scores for 19 of 32 possible symptom frequency, severity, and distress ratings. Children's scores were higher for frequency and severity, while parents' scores were higher for distress. Sleeping difficulties, pain, nausea, and diarrhea demonstrated the highest concordance, while feeling nervous, sadness, irritability, and fatigue yielded the lowest concordance between children's and parents' symptom reports. PRACTICE IMPLICATIONS: Eliciting the symptom experience from the child, when appropriate, rather than a parent proxy is best practice given evidence supporting the overestimation of symptom prevalence by parents and underestimation of symptom frequency and severity for some symptoms. When proxy raters must be used, pediatric nurses should educate proxy raters regarding symptom assessment, and assess and tend to symptoms that may not exhibit visual cues. Pediatric nurses should conduct a comprehensive symptom assessment and evaluate beyond the presence of symptoms and include an assessment of frequency, severity, and distress for physical and psychological symptoms to optimize symptom management strategies.
Montgomery K E; Vos K; Raybin J L; Ward J; Balian C; Gilger E A; Li Z
Journal for Specialists in Pediatric Nursing
2020
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<a href="http://doi.org/10.1111/jspn.12316" target="_blank" rel="noreferrer noopener">10.1111/jspn.12316</a>
Continuous deep sedation at the end of life in children with cancer: experience at a single center in Japan
end of life; Palliative sedation; decision-making; ability in daily living; respite sedation
Continuous deep sedation (CDS) is used to alleviate unbearable and otherwise refractory symptoms in patients dying of cancer. No data are available concerning CDS in children from Japan to date. This study primarily aimed to describe experience in CDS in child cancer patients at Kyoto University Hospital. The secondary aims were to identify the characteristics of patients who received CDS, and to assess ability in daily living at the end of life. A retrospective chart review was performed for child cancer patients who died at the institute between 2008 and 2017. The data of 35 patients were analyzed. Nine (26%) patients had received CDS. Indications for CDS were dyspnea (56%), agitation (22%), seizures (22%), and pain (11%). Midazolam was used in all nine cases. In eight (89%) patients, opioids were also prescribed. In seven (78%) patients, CDS was performed for < 48 hours. In all nine cases, consent was obtained from the parent(s) but not from the children. CDS was more likely in patients with solid tumors (p = 0.018) and those who had received no respite sedation (p = 0.002). Patients without central nervous system symptoms tended to maintain their capacity for oral intake and verbal communication until a few days prior to death. This is the first report on CDS in child cancer patients from Japan. In the CDS literature, cross-study differences are evident for incidence, target symptoms, duration, and the decision-making process. Further international discussion is warranted concerning indications for CDS and the decision-making process.
Maeda S; Kato I; Umeda K; Hiramatsu H; Takita J; Adachi S; Tsuneto S
Pediatric Hematology and Oncology
2020
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<a href="http://doi.org/10.1080/08880018.2020.1744781" target="_blank" rel="noreferrer noopener">10.1080/08880018.2020.1744781</a>
Unrealistic parental expectations for cure in poor-prognosis childhood cancer
child; human; patient care; controlled study; female; major clinical study; male; cohort analysis; article; priority journal; childhood cancer; cancer recurrence; quality of life; confidence interval; cancer palliative therapy; interpersonal communication; expectation; clinical decision making; parental behavior; prospective study; cancer prognosis; neuroblastoma; questionnaire; medical record; pediatric patient; cancer risk; theoretical model; high risk population; odds ratio
Background: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor-prognosis childhood cancer.
Mack J W; Cronin A M; Uno H; Shusterman S; Twist C J; Bagatell R; Rosenberg A; Marachelian A; Granger M M; Glade Bender J; Baker J N; Park J; Cohn S L; Levine A; Taddei S; Diller L R
Cancer
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/10.1002/cncr.32553" target="_blank" rel="noreferrer noopener">10.1002/cncr.32553</a>
Racial and Ethnic Differences in Communication and Care for Children With Advanced Cancer
pediatric; prognosis; cancer; end-of-life; disparities; communication
Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer. Method(s): We conducted a prospective cohort study at nine pediatric cancer centers enrolling 95 parents (42% racial/ethnic minorities) of children with poor prognosis cancer (relapsed/refractory high-risk neuroblastoma). Parents were surveyed about whether prognosis was discussed; likelihood of cure; intent of current treatment; and primary goal of care. Medical records were used to identify high-intensity medical care since the most recent recurrence. Logistic regression evaluated differences between white non-Hispanic and minority (black, Hispanic, and Asian/other race) parents. Result(s): About 26% of parents recognized the child's low likelihood of cure. Minority parents were less likely to recognize the poor prognosis (odds ratio [OR] = 0.19; 95% CI = 0.06-0.63; P = 0.006) and the fact that current treatment was unlikely to offer cure (OR = 0.07; 95% CI = 0.02-0.27; P < 0.0001). Children of minority parents were more likely to experience high-intensity medical care (OR = 3.01; 95% CI = 1.29-7.02; P = 0.01). After adjustment for understanding of prognosis, race/ethnicity was no longer associated with high-intensity medical care (adjusted odds ratio = 2.14; 95% CI = 0.84-5.46; P = 0.11), although power to detect an association was limited. Conclusion(s): Parental understanding of prognosis is limited across racial and ethnic groups; racial and ethnic minorities are disproportionately affected. Perhaps as a result, minority children experience higher rates of high-intensity medical care. Work to improve prognostic understanding should include focused work to meet needs of minority populations. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Mack J W; Uno H; Twist C J; Bagatell R; Rosenberg A R; Marachelian A; Granger M M; Glade Bender J; Baker J N; Park J R; Cohn S L; Fernandez J H; Diller L R; Shusterman S
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.2020.04.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.020</a>
Palliative Care Referral Patterns for Adolescent and Young Adult Patients at a Comprehensive Cancer Center
palliative care; supportive care; cancer care continuum; referral patterns; symptom burden
Palliative care (PC) serves a valuable role throughout the disease trajectory for adolescents and young adults (AYAs) living with cancer. A 3-year retrospective chart review was performed to characterize AYA PC referral patterns in patients aged 18-39 years to identify strategies for improving PC access. Despite known benefits, AYA referrals to PC during oncologic treatment occurred only for a small percentage of eligible patients (8.4%), largely occurred in the inpatient setting (73%), and were more likely in specific cancer types with high symptom burden and/or poor survival, with the greatest penetrance noted in lung cancer (51%).
Lockwood B J; Ntukidem O L; Ehrman S E; Schnell P M; Klemanski D L; Bhatnagar B; Lustberg M
Journal of adolescent and young adult oncology
2020
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<a href="http://doi.org/10.1089/jayao.2020.0081" target="_blank" rel="noreferrer noopener">10.1089/jayao.2020.0081</a>
Regret and unfinished business in parents bereaved by cancer: A mixed methods study
pediatric; neoplasm; grief; decision-making; caregivers; Regret
BACKGROUND: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited. AIM: The aim of this study was to examine regret and unfinished business in parents bereaved by cancer, as well as their associations with caregiving experiences and prolonged grief. DESIGN: This was a cross-sectional mixed methods study that utilized self-report questionnaires with open-ended items. SETTING/PARTICIPANTS: The multisite study took place at a tertiary cancer hospital and pediatric cancer clinical research institution. Participants were 118 parents (mothers = 82, fathers = 36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years prior. RESULTS: Results showed that 73% of the parents endorsed regret and 33% endorsed unfinished business, both of which were more common among mothers than fathers (p 0.05). Parents were on average moderately distressed by their regrets and unfinished business, and both regret-related and unfinished business-related distress were associated with distress while caregiving and prolonged grief symptoms. CONCLUSION: Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.
Lichtenthal W G; Roberts K E; Catarozoli C; Schofield E; Holland J M; Fogarty J J; Coats T C; Barakat L P; Baker J N; Brinkman T M; Neimeyer R A; Prigerson H G; Zaider T; Breitbart W; Wiener L
Palliative Medicine
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/10.1177/0269216319900301" target="_blank" rel="noreferrer noopener">10.1177/0269216319900301</a>
Enhancing Connections-Palliative Care: A Quasi-Experimental Pilot Feasibility Study of a Cancer Parenting Program
child; human; palliative therapy; preschool child; controlled study; hospice; article; child parent relation; adolescent; Self Concept; anxiety; depression; distress syndrome; skill; metastasis; nurse; advanced cancer; feasibility study; disease course; telephone; program impact; psychological adjustment; tumor-related gene
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap.
Lewis F M; Loggers E T; Phillips F; Palacios R; Tercyak K P; Griffith K A; Shands M E; Zahlis E H; Alzawad Z; Almulla H A
Journal of palliative medicine
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/10.1089/jpm.2019.0163" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0163</a>
Characteristics of parental decision-making for children with advanced cancer who are offered enrollment in early-phase clinical trials: A systematic review
informed consent; decision-making; communication; pediatric oncology; phase I trial
Limited research is available on parental decision-making regarding their children's participation in pediatric phase I oncology trials compared with the adult population. The objectives of this review were to describe: (1) the process of parental decision-making in this situation; (2) the optimal communication features physicians need when proposing inclusion in such trials; and (3) the place of the child/adolescent in the assent process. Thirty relevant studies meeting inclusion criteria were identified by searching five computerized databases (PubMed, Web of Science, Cairn, Psychinfo, EM Premium). Parental decision-making is a complex process based on hopeful expectations, multiple family considerations and the child's previous cancer experience. It is highly impacted by the quality of physicians' communication. A therapeutic alliance along with an empathetic attitude and a timely delivery of accurate information is essential. Due weight should be given to the voice of children or adolescents and their optimal level of involvement may be discussed depending on their age and maturity. They should be given age-adapted information in order to empower them to be rightfully and meaningfully involved in early-phase research. This review highlights the main gaps and necessary remedial actions to support an optimal patient care management in this situation. Physicians' training in communication, structured interdisciplinary teamwork and early integration of palliative care are three key challenges which need to be implemented to actively engage in optimization strategies which would improve patient care and family support when offering enrollment in a phase I trial. Copyright © 2020, © 2020 Taylor & Francis Group, LLC.
Le Rouzic M A; Claudot F
Pediatric Hematology and Oncology
2020
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<a href="http://doi.org/10.1080/08880018.2020.1759738" target="_blank" rel="noreferrer noopener">10.1080/08880018.2020.1759738</a>
Examining key sociodemographic characteristics of adolescents and young adults with cancer: A post hoc analysis of the Promoting Resilience in Stress Management randomized clinical trial
child; human; palliative therapy; controlled study; female; major clinical study; male; article; adolescent; school child; young adult; quality of life; total quality management; outcome assessment; randomized controlled trial; treatment outcome; cancer center; coping behavior; socioeconomics; Pediatric Quality of Life Inventory; stress management; cancer specific quality of life; Connor-Davidson Resilience Scale; Hope Scale; patient-reported outcome; Psychological Distress Scale; psychosocial development; environmental resilience; post hoc analysis
Background: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
Lau N; Bradford M C; Steineck A; Scott S; Bona K; Yi-Frazier J P; McCauley E; Rosenberg A R
Palliative Medicine
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/10.1177/0269216319886215" target="_blank" rel="noreferrer noopener">10.1177/0269216319886215</a>
You are at rock bottom: A qualitative systematic review of the needs of bereaved parents as they journey through the death of their child to cancer
social support; pediatric cancer; parental experience; meaning making; emotional support; parent support; practical support
Problem Identification: This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses emotional, practical, informational, and meaning-making support needs.Literature Search: The Joanna Briggs Institute procedures for conducting qualitative systematic reviews guided every stage of this review. Four databases (PsychInfo, CINAHL, Pubmed, and ASSIA) were systematically searched, in addition to the gray literature and scoping review. Through a five-step critical appraisal process 11 out of 668 potential articles were identified as meeting the inclusion criteria.Data Evaluation/Synthesis: Relevant findings were synthesized with a thematic-synthesis approach. Findings, which follow the journey of bereaved parents integrated under the core-category "Needs." This encompasses of four higher-level categories: Last days: Parent needs when caring for their dying childRest in peace: Parent needs during the child's deathFeeling abandoned: Parent needs for contact after the child's deathSearching for Meaning: Parents needs when making sense of lossConclusion: Informational support needs is largely unexplored in academic literature. Staff in the treating-hospital are central in offering bereavement-support to parents, who may otherwise feel that they have lost their second home (hospital) and second family (staff).
Kenny M; Darcy-Bewick S; Martin A; Eustace-Cook J; Hilliard C; Clinton F; Storey L; Coyne I; Murray K; Duffy K; Fortune G; Smith O; Higgins A; Hynes G
Journal of Psychosocial Oncology
2020
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<a href="http://doi.org/10.1080/07347332.2020.1762822" target="_blank" rel="noreferrer noopener">10.1080/07347332.2020.1762822</a>
Pain Squad+ smartphone app to support real-time pain treatment for adolescents with cancer: protocol for a randomised controlled trial
pediatrics; supportive care; pain; cancer; protocol; randomised controlled trial; smartphone app; symptom treatment
INTRODUCTION: Pain negatively affects the health-related quality of life (HRQL) of adolescents with cancer. The Pain Squad+ smartphone-based application (app), has been developed to provide adolescents with real-time pain self-management support. The app uses a validated pain assessment and personalised pain treatment advice with centralised decision support via a registered nurse to enable real-time pain treatment in all settings. The algorithm informing pain treatment advice is evidence-based and expert-vetted. This trial will longitudinally evaluate the impact of Pain Squad+, with or without the addition of nurse support, on adolescent health and cost outcomes. METHODS AND ANALYSIS: This will be a pragmatic, multicentre, waitlist controlled, 3-arm parallel-group superiority randomised trial with 1:1:1 allocation enrolling 74 adolescents with cancer per arm from nine cancer centres. Participants will be 12 to 18 years, English-speaking and with >/=3/10 pain. Exclusion criteria are significant comorbidities, end-of-life status or enrolment in a concurrent pain study. The primary aim is to determine the effect of Pain Squad+, with and without nurse support, on pain intensity in adolescents with cancer, when compared with a waitlist control group. The secondary aims are to determine the immediate and sustained effect over time of using Pain Squad+, with and without nurse support, as per prospective outcome measurements of pain interference, HRQL, pain self-efficacy and cost. Linear mixed models with baseline scores as a covariate will be used. Qualitative interviews with adolescents from all trial arms will be conducted and analysed. ETHICS AND DISSEMINATION: This trial is approved by the Hospital for Sick Children Research Ethics Board. Results will provide data to guide adolescents with cancer and healthcare teams in treating pain. Dissemination will occur through partnerships with stakeholder groups, scientific meetings, publications, mass media releases and consumer detailing. TRIAL REGISTRATION NUMBER: NCT03632343 (ClinicalTrials.gov).
Jibb L; Nathan P C; Breakey V; Fernandez C; Johnston D; Lewis V; McKillop S; Patel S; Sabapathy C; Strahlendorf C; Victor J C; Moretti M E; Nguyen C; Hundert A; Cassiani C; El-Khechen R G; Insull H; Hamilton R; Fang G; Kuczynski S; Stinson J
BMJ Open
2020
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<a href="http://doi.org/10.1136/bmjopen-2020-037251" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-037251</a>
Seven Types of Uncertainty When Clinicians Care for Pediatric Patients With Advanced Cancer
child; human; palliative therapy; controlled study; article; pediatrics; childhood cancer; patient referral; Uncertainty; qualitative analysis; cancer patient; cancer prognosis; oncologist; pediatric patient; semi structured interview; organization; care behavior; Advanced cancer
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Hill D L; Walter J K; Szymczak J E; DiDomenico C; Parikh S; Feudtner C
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.2019.08.010" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.010</a>
Methadone for Cancer Pain in Pediatric End-of-Life Care
palliative care; opioid analgesics; cancer pain; pediatric oncology; neuropathic pain; methadone; nociceptive pain
BACKGROUND: The goal of adequate pain control becomes increasingly salient for children with cancer and their families as the patients approach the end of life. Methadone is one option that is particularly desirable in end-of-life care given its long duration of action and NMDA antagonism that may help in controlling pain refractory to conventional opioids. The purpose of this study was to describe a single institution's experience with methadone for the treatment of cancer pain in pediatric end-of-life care. METHOD(S): This retrospective, observational, single-center study included all patients during a 9-year period who died in the inpatient setting and were receiving methadone in their last 30 days of life. RESULT(S): Twenty patients were identified, 18 (90%) of whom received methadone for nociceptive pain. The median duration of methadone use was 32 days (range 2-323 days). Methadone doses ranged from 0.09 to 7.76 mg/kg per day. There were no instances of discontinuing methadone due to an increased QTc interval. No episodes of torsades de pointes were observed. CONCLUSION(S): In patients with pediatric cancer who are nearing the end of life, methadone is a valuable adjunctive therapy to treat nociceptive and neuropathic pain and to prevent opioid-induced hyperalgesia and opioid tolerance. An individualized approach to dosage and route should be considered based on specific clinical circumstances.
Hall E A; Sauer H E; Habashy C; Anghelescu D L
The American journal of hospice & 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/10.1177/1049909120963641" target="_blank" rel="noreferrer noopener">10.1177/1049909120963641</a>
Perceptions of adolescents with cancer undergoing palliative care about their illness process
palliative care; adolescent; neoplasms; oncology nursing
OBJECTIVE: To understand the perception of adolescents with cancer undergoing palliative cares about their illness process. METHOD: An exploratory and qualitative study, per formed at a federal public hospital specialized in oncology disease in Rio de Janeiro, through interviews with nine adolescents aged 12 to 20 years old, from July to August 2017. Data was submitted to thematic analysis and the theoretical framework was Hildegard Peplau's Theory of Interpersonal Relationships. RESULTS: Three categories emerged: Living the difficult moment of the trajectory of the disease; Feeling the social isolation and that life has stopped; and Overcoming the difficult stage of the disease. They addressed the trajectory of the disease since the diagnosis, with the awakening of feelings of isolation and stagnation of life. Moreover, they highlighted the overcoming power of these adolescents. FINAL CONSIDERATIONS: The study made it possible to know the difficulties experienced during the course of the disease, providing subsidies for the practice of nurses to happen in a sensitive, individualized manner and focused on the individual's need thus enhancing comfort and quality of life.
Guimaraes T M; Pacheco S T A; Nunes M D R; Silva L F D
Revista Gaucha de Enfermagem
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/10.1590/1983-1447.2020.20190223" target="_blank" rel="noreferrer noopener">10.1590/1983-1447.2020.20190223</a>
Association of Religious and Spiritual Factors With Patient-Reported Outcomes of Anxiety, Depressive Symptoms, Fatigue, and Pain Interference Among Adolescents and Young Adults With Cancer
pediatrics; adolescent; end-of-life; oncology; pediatric cancer; psychiatry; depressive disorders; anxiety disorders
ImportanceThe associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown.ObjectiveTo model the association of spiritual and religious constructs with patient-reported outcomes of anxiety, depressive symptoms, fatigue, and pain interference.Design, Setting, and ParticipantsThis cross-sectional study used baseline data, collected from 2016 to 2019, from an ongoing 5-year randomized clinical trial being conducted at 4 tertiary-referral pediatric medical centers in the US. A total of 366 adolescents were eligible for the clinical trial, and 126 were randomized; participants had to be aged 14 to 21 years at enrollment and be diagnosed with any form of cancer. Exclusion criteria included developmental delay, scoring greater than 26 on the Beck Depression Inventory II, non-English speaking, or unaware of cancer diagnosis.ExposuresSpiritual experiences, values, and beliefs; religious practices; and overall self-ranking of spirituality’s importance.Main Outcomes and MeasuresVariables were taken from the Brief Multidimensional Measurement of Religiousness/Spirituality (ie, feeling God’s presence, daily prayer, religious service attendance, being very religious, and being very spiritual) and the spiritual well-being subscales of the Functional Assessment of Chronic Illness Therapy (meaning/peace and faith). Predefined outcome variables were anxiety, depressive symptoms, fatigue, and pain interference from Patient-Reported Outcomes Measurement Information System pediatric measures.ResultsA total of 126 individuals participated (72 [57.1%] female participants; 100 [79.4%] white participants; mean [SD] age, 16.9 [1.9] years). Structural equation modeling showed that meaning and peace were inversely associated with anxiety (β = –7.94; 95% CI, –12.88 to –4.12), depressive symptoms (β = –10.49; 95% CI, –15.92 to –6.50), and fatigue (β = –8.90; 95% CI, –15.34 to –3.61). Feeling God’s presence daily was indirectly associated with anxiety (β = –3.37; 95% CI, –6.82 to –0.95), depressive symptoms (β = –4.50; 95% CI, –8.51 to –1.40), and fatigue (β = –3.73; 95% CI, –8.03 to –0.90) through meaning and peace. Considering oneself very religious was indirectly associated with anxiety (β = –2.81; 95% CI, –6.06 to –0.45), depressive symptoms (β = −3.787; 95% CI, –7.68 to –0.61), and fatigue (β = –3.11, 95% CI, –7.31 to –0.40) through meaning and peace. Considering oneself very spiritual was indirectly associated with anxiety (β = 2.11; 95% CI, 0.05 to 4.95) and depression (β = 2.8, 95% CI, 0.07 to 6.29) through meaning and peace. No associations were found between spiritual scales and pain interference.Conclusions and RelevanceIn this study, multiple facets of spirituality and religiousness were associated with anxiety, depression, and fatigue, all of which were indirectly associated with the participant’s sense of meaning and peace, which is a modifiable process. Although these results do not establish a causal direction, they do suggest palliative interventions addressing meaning-making, possibly including a spiritual or religious dimension, as a novel focus for intervention development.
Grossoehme D H; Friebert S; Baker J N; Tweddle M; Needle J; Chrastek J; Thompkins J; Wang J; Cheng Y I; Lyon M E
JAMA Network Open
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/10.1001/jamanetworkopen.2020.6696" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.6696</a>
Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer
Female; Adaptation; Psychological; Attitude to Death; Bereavement; Self Concept; Social Environment; Interviews; Human; Phenomenological Research; Qualitative Studies; Coping; Grief; Complicated Grief; Childhood Neoplasms – Mortality; Mothers – Psychosocial Factors
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis—guided by meaning-making theories of loss—revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.
Gerrish N J; Bailey S
Omega: Journal of Death & Dying
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/10.1177/0030222818762190" target="_blank" rel="noreferrer noopener">10.1177/0030222818762190</a>
Massage therapy for symptom reduction and improved quality of life in children with cancer in palliative care: A pilot study
child; human; palliative therapy; controlled study; female; male; article; Quality of Life; adolescent; clinical article; pain; Massage; follow up; quantitative study; pilot study; expectation; leukemia; lymphoma; sarcoma; carcinoma; pain measurement; patient worry
Background: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses. Children with cancer have experienced lower anxiety after MT. No studies have examined the effects of MT in pediatric oncology patients receiving palliative care.
Genik L M; McMurtry C M; Marshall S; Rapoport A; Stinson J
Complementary Therapies in Medicine
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.ctim.2019.102263" target="_blank" rel="noreferrer noopener">10.1016/j.ctim.2019.102263</a>
Congruence Gaps between Adolescents with Cancer and Their Families Regarding Values, Goals, and Beliefs about End-of-Life Care
pediatrics; adolescents; cancer; oncology; families; end-of life care
Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care. Objective(s): To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs. Design, Setting, and Participant(s): This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019. Exposure: Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention. Main Outcomes and Measures: The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted kappa (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions). Result(s): A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). Conclusions and Relevance: Many families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and preference for being off machines that extend life. Pediatric advance care planning could minimize these misunderstandings with the potential for a substantial impact on quality of care. Copyright © 2020 American Medical Association. All rights reserved.
Friebert S; Grossoehme D H; Baker J N; Needle J; Thompkins J D; Cheng Y I; Wang J; Lyon M E
JAMA Network Open
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/10.1001/jamanetworkopen.2020.5424" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.5424</a>