BACKGROUND: Treatment options for childhood cancer have improved substantially, although in many low- and middle-income countries survival is lagging behind. Integral childhood cancer care involves the whole spectrum from detection and diagnosis to palliative and survivorship care.
METHODS: Based on a literature review and expert opinions, we summarized current practice and recommendations on the following aspects of childhood cancer in Latin America: diagnostic processes and time to diagnosis, stage at diagnosis, treatments and complications, survivorship programs and palliative care and end-of-life services.
RESULTS: Latin America is a huge and heterogeneous continent. Identified barriers show similar problems between countries, both logistically (time and distance to centers, treatment interruptions) and financially (cost of care, cost of absence from work). Governmental actions in several countries improved the survival of children with cancer, but difficulties persist in timely diagnosis and providing adequate treatment to all childhood cancer patients in institutions with complete infrastructure. Treatment abandonment is still common, although the situation is improving. Cancer care in the region has mostly focused on acute treatment of the disease and has not adequately considered palliative and end-of-life care and monitoring of survivors.
CONCLUSIONS: Decentralizing diagnostic activities and centralizing specialized treatment will remain necessary; measures to facilitate logistics and costs of transportation of the child and caretakers should be implemented. Twinning actions with specialized centers in high income countries for help in diagnosis, treatment and education of professionals and family members have been shown to work. Palliative and end-of-life care as well as childhood cancer survivorship plans are needed.
Background: The aim of this study was to explore expert professionals’ opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services.
Methods: A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years’ (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests.
Results: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments.
Conclusions: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
Introduction: Despite growing recognition of pediatric palliative care's importance, training in palliative care communication remains a gap in medical education. Graduating medical students frequently feel unprepared to initiate or facilitate goals of care conversations with their patients, particularly in pediatrics.
Methods: We created a 3-hour session featuring an introductory lecture on pediatric palliative care, communication drills on responding to emotion, and small-group case-based discussions utilizing role-play, targeting fourth-year medical students as the primary learners. Senior residents were also given the opportunity to develop skills by role-playing the patient parent and cofacilitating case discussions alongside palliative care faculty. Students evaluated session utility and their own confidence through pre- and postsession surveys using a 5-point Likert scale (1 = strongly disagree, 5 = strongly agree).
Results: Twenty-six students were included in the analysis over 3 years. All agreed that the session was useful (M = 4.9). Students showed significant improvement in confidence in explaining pediatric palliative care (presession M = 3.2, postsession M = 4.1, p < .001), understanding the family experience (presession M = 2.7, postsession M = 4.1, p < .001), and eliciting goals and values from families whose children face serious illnesses (presession M = 3.1, postsession M = 4.1, p < .001). Pediatric resident cofacilitators also felt the session benefited their own teaching and communication skills.
Discussion: This 3-hour interactive session on pediatric palliative care utilizing communication drills and role-play was effective in improving fourth-year medical students' confidence in communicating with families of children facing life-threatening illnesses.
Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent–child communication. We examined the impact of a web-based legacy intervention on parent–child communication. Facebook advertisements were used to recruit families of children (ages 7–17) with relapsed/refractory cancer. Parent–child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child’s final digital story. Children and parents completed the Parent–Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of P<0.05. Intervention effects were measured using Cohen’s d. Ninety-seven parent–child dyads were included for analysis. Changes in parent–child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father–child communication (Cohen’s d = -0.22–0.33). Legacy-making shows promise to facilitate improved parent–child communication, particularly for fathers.
Clinical Trials Registry: Number NCT04059393.
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.
METHODS: 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.
RESULTS: 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: 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.
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.
BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs.
AIM: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs.
DESIGN: A scoping review.
DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF).
RESULTS: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs.
CONCLUSION: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.
Nursing staff play a key role in enhancing a patient's quality of life during end of life; however, they perceive lack of knowledge to be the largest barrier in providing quality end-of-life (EOL) care. Literature suggests that implementation of palliative and EOL care education can improve nursing EOL care practices. In order to address the gap in nursing knowledge and comfort, a quasi-experimental study was conducted; this study included the implementation of a multimodal EOL care educational series on an inpatient pediatric hematology oncology floor over 6 months. Prior to implementation, nursing staff completed a survey to measure perceived knowledge and comfort level regarding EOL care. The series included didactic sessions, in-services, case studies, practice exercises, and interactive discussions led by an interprofessional team of nurses, child-life specialists, and social workers. Educational topics included EOL symptom management, child-life services, supportive care resources, COMFORT communication, and an End-of-Life Nursing Education Consortium course. Following the educational series, the survey was repeated. Results of the survey demonstrated an increase in nursing knowledge and comfort levels. Significant improvements were observed across several items including medication management of dyspnea ( 21,83 =5.1, P = .023), comfort with implementing interventions ( 21,93 = 3.9, P = .049), and knowledge of hospital resources ( 21,93 = 6.1, P = .014). These results suggest that while EOL education strategies can vary, a combination of learner engagement tactics can increase knowledge and comfort regarding EOL concepts and potentially positively impact nursing practice.
Background: Health service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are essential to inform effective, efficient and equitable health services.
Aim: To quantify health service usage by children and young people aged 0–21 years with a life-limiting condition admitted to hospital and health service facilities in Queensland, Australia during the 2011 and 2016 calendar years, and describe the clinical and demographic characteristics associated with health services usage.
Design: Retrospective health administrative data linkage of clinical and demographic information with hospital admissions was extracted using International Statistical Classification of Diseases and Related Health Problems, Tenth Revision Australian Modification (ICD-10-AM) diagnostic codes. Data were analysed using descriptive statistics.
Setting/participants: Individuals aged 0–21 years with a life-limiting condition admitted to a Queensland Public Hospital and Health Service or private hospital.
Results: Hospital admissions increased from 17 955 in 2011 to 23 273 in 2016, an increase of 5318 (29.6%). The greatest percentage increase in admissions were for those aged 16–18 years (58.1%, n=1050), and those with non-oncological conditions (36.2%, n=4256). The greatest number of admissions by ICD-10-AM chapter for 2011 and 2016 were by individuals with neoplasms (6174, 34.4% and 7206, 31.0% respectively). Overall, the number of admissions by Indigenous children and young people increased by 70.2% (n=838).
Conclusions: Administrative data are useful to describe clinical and demographic characteristics and quantify health service usage. Available data suggest a growing demand for health services by children eligible for palliative care that will require an appropriate response from health service planners.
The number of children living with chronic, complex medical needs is steadily increasing secondary to advances in clinical technology and disease management. As a result, patient care requirements become multifaceted with the need for specific therapies and treatments that require extensive knowledge and skills. As these children are managed throughout the health care continuum, nurses are challenged to offer specialized care for complex conditions, while meeting the personnel and financial demands of the changing health care environment. It is well established that medically complex children can put a burden on family life, resulting in compassion fatigue for nonclinical caregivers. It is possible that, secondary to frequent and lengthy hospitalizations, nurses may also be affected. Therefore, a review of compassion fatigue or professional burnout in nurses caring for medically complex children was conducted. Appropriate identification of nurses at risk for compassion fatigue is imperative to provide the necessary interventions and support. Reducing compassion fatigue is likely to improve outcomes, including nursing turnover, nursing professional engagement, and job satisfaction, thus improving the care delivery experience for children with complex conditions.
The COVID-19 pandemic has caused health care facilities to restrict visitors for patients in all care settings. Most pediatric care facilities have restricted visitation to one parent at a time, unfortunately even if the child is in critical condition or is terminally ill. These situations have necessitated the use of technology such as the Zoom platform to have difficult conversations concerning complex medical decision-making and goals of care. In cases where the child is deemed at immediate end of life, many facilities will allow both parents to be at the bedside, but no other family or friends that may be integral support to the parents or child. These situations have compelled the use of FaceTime, Zoom, or Skype technology to facilitate real-time support at end of life for these young patients and their caregivers. This article presents a case where technologies such as these were utilized to assist a family in goals-of-care discussions and at end of life for an infant in the intensive care unit at a large urban pediatric care facility during the COVID-19 pandemic.
BACKGROUND: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child's home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home.
METHODS: We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0-18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies.
RESULTS: The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children's mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted.
CONCLUSIONS: Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.
There is a growing population of children with complex chronic conditions (CCCs) whose caregivers would benefit from palliative care (PC). However, little is known about caregivers' PC awareness. We aimed to describe PC awareness among caregivers of children with CCCs and identify factors associated with lack of PC awareness. We used the National Cancer Institute's national Health Information National Trends Survey 2018 data to determine the percentage of caregivers of ill children who have PC awareness. After matching, caregiver PC awareness was compared with that of (1) the general survey population, (2) other caregivers, and (3) caregivers not caring for children. We used multivariable regression to determine factors associated with lack of PC awareness. Of 131 caregivers, 60% had “never heard of” PC. Caregivers of children were no more likely to have heard of PC than the general survey population (P = .76), noncaregivers (P = .97), or caregivers of nonchildren (P = .13). Caregivers younger than 40 years and without a college degree were less likely to have PC awareness than their peers. Most caregivers of ill children have no PC awareness, with no more PC awareness than the general population. Nurses caring for children with CCCs can help educate families and other health care team members about PC.
Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations.
Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known: ; Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New: ; Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job. ; Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.
Providing home care to children with complex physical health needs is an emotionally challenging role. Extant literature and documents such as the Cavendish Review (2013) have reported that a large proportion of care for this population is carried out by non-registered staff (support workers). Provision of clinical supervision for nurses working in palliative care is increasing, however, supervision needs of support workers are commonly neglected. This paper sought to synthesise what is known about clinical supervision practices for support workers in paediatric palliative care (PPC). A literature review was conducted in accordance with integrative review guidelines. 315 papers were identified initially, 15 studies were included in this review. Four commonalities were identified: importance of team cohesion, varying degrees of formality, self-awareness and practicalities. Support workers received varying forms of supervision and some facilitators faced organisational difficulties involving staff in supervision. Support workers who received staff support generally appreciated it in recognition that their work is complex and emotionally difficult. This paper highlighted that further research should investigate the efficacy of clinical supervision as a method of reducing stress and burnout for support workers. Any implementation of supervision should involve a considered approach to training and supervision to ensure fidelity.
Objective: Explore parents’ point of view about forgoing life sustaining treatment (LST) in terminal critically ill children and factors affecting their decisions.
Method: This was a qualitative study using in-depth interviews with parents whose child died between 6–12 months old in pediatric intensive care unit (PICU) of a university-affiliated teaching hospital. Interviews were audiotaped and transcribed. Data were analyzed using interpretive description method.
Result: A total of 7 parents of 5 children decided to withhold or withdraw LST. Five parents from 4 children decided to sign the do not attempt resuscitation (DNAR), and none choose to withdrew the LST, including mechanical support. Factors influenced their decision were communication, value of children, child best interest, intuition, religious belief, and emotions. Economic factors did not influence the decision-making.
Conclusion: Most parents decided to sign the DNAR, none choose to withdrew mechanical support. Communication was the most important factor that influenced parents to make a forgoing LST decision.
BACKGROUND: Palliative care is one of the necessary elements in the treatment of children with cancer. Adaptation of country-specific palliative care practices to universal standards can provide valuable information for health care stakeholders.
AIM: This study proposed to evaluate the global compliance of palliative care for children with cancer among select Middle Eastern countries.
METHODS: In this comparative study, information about palliative care principles in Iran, Jordan, Saudi Arabia, Lebanon and Turkey was extracted from the literature. Data were collected using a checklist based on the conceptual framework of palliative care inspired by Wolff and Browne's (2011) standards. Then the extracted information was compared and analysed.
FINDINGS: The palliative care standards in the selected countries did not show full compliance with global standards. In all selected countires, the child's and family's needs were considered, and a comprehensive care approach was followed. However, in none of the selected countries was the child's agreement to discharge from the hospital obtained, and neither was it ensured that the needs of the child and family were met.
CONCLUSIONS: Palliative care principles in the selected Middle Eastern countries are far from meeting universal standards. Accordingly, planning and training are recommended in different domains of nursing education as well as clinical nursing in the care of children. Healthcare authorities and politicians must provide the appropriate conditions for better provision of palliative care for children with cancer.
End-of-life accompaniment requires even greater care of the patient and their family by the multi-disciplinary team, which requires a clear, wellorganized interdisciplinary and interprofessional approach. Musictherapy (MT) is often use as a complementary approach to improve a person's quality of life by helping to relieve symptoms, addressing psychological needs, offering support and comfort, facilitating communication, and meeting spiritual needs.Through songwriting, Ettore, a teenager was able to make choices and act on his own will. Songwriting represented a channel for effective and powerful communication and expression. The song became the means by which the relationship with the team was maintained and deepened; it became something tangible, a product with its own consistency, a further bond that unites Ettore to his family to this day.