The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review

ContextChildren with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown.ObjectiveWe conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains.MethodsWe searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization.ResultsWe screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication.ConclusionSPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.     

Staff perception of the implementation,enablers and barriers to pediatric intensive care unit diary writing: A qualitative study

ObjectivesTo explore how the multi-professional pediatric intensive care unit staff experienced the implementation of the diary.Research Methodology/DesignQualitative study using the implementation research approach.Setting: a six-bed pediatric intensive care unit at a large Italian tertiary care pediatric hospital, treating patients with acute conditions from the Emergency Department or hospital wards.Main outcome measuresHealthcare providers’ experiences of the implementation of the diaries. Data was collected by focus groups and interviews and thematic analysis was performed.FindingsThree focus groups and four interviews with staff were conducted after the implementation of thediaries from August 2020 to June 2021. Staff describe an initial disbelief towards the effectiveness of diaries followed by an increasing perception of their relevance for parents’ emotional expression through shared narration. Diaries are reported as a beneficial communication tool between the family, the child, and health care providers, increasing staff understanding of parents’ experiences of their child’s admission and parents’ sense of the care received by their child. For staff, barriers for diary writing were logistics, lack of time, limited sense of ownership, fear of legal retaliation and fear of emotional labor.ConclusionHealth care providers perceived diaries as beneficial for parents and the healthcare team, potentially supporting their partnership as recommended by Family Centered Care models. The enablers and barriers that emerged for diary writing can support the development of implementation strategies to prevent the reported challenges to diary writing in the healthcare team, enhancing their uptake in the pediatric intensive care unit setting.     

Lived experiences with unmet supportive care needs in pediatric cancer: Perspective of Chinese children and their parents

ObjectiveUnmet supportive care needs(SCNs) impact pediatric cancer patients and their parents. This study aimed to explore the unmet SCNs from the perspective of Chinese children with cancer and their parents through lived experiences.MethodsThe data of this study was collected using face-to-face semi-structured interviews. The participants were recruited from the oncology units of three children’s hospitals in China’s cities (Shanghai, Guangzhou, and Hefei) from October 2020 to December 2021. Data were analyzed using Colaizzi’s seven-step phenomenological analysis method.ResultsEight pediatric cancer patients and twenty-four parents were enrolled in the study. Four main themes and eight subthemes (both children’s and parent’s perspectives) were generated: 1) meeting the ongoing needs along the cancer trajectory (can you tell me what comes next; our needs are growing); 2) communicating with a family focus (they only talk to my parents; let each family member have a voice); 3) providing care beyond the treatment (I am bigger than my body [the children’s needs for emotional consolidation and information about their prognosis]; there are things beyond treatment); 4) getting support from the community (I am not a monster [the children were unhappy about being treated differently]; we want to connect with the resources near us).ConclusionThis study revealed multiple unmet SCNs from the perspective of Chinese children with cancer and their parents. The findings call for comprehensive and in-depth supportive care beyond treatment, integration of the family member voice in pediatric cancer care, and a coordinated pediatric cancer support mechanism in the Chinese healthcare system.     

The impact of the social and physical environments on parent–healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study

ObjectivesThis study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of their child in intensive care.Research methodologyConstructivist grounded theory.SettingFour Australian paediatric intensive care units.Main outcome measuresAudio-recorded, semi-structured interviews were conducted with twenty-six bereaved parents. Data were analysed using the constant comparison and memoing techniques common to grounded theory.FindingsThe physical and social environment of the intensive care unit influenced the quality of the parent–healthcare provider relationship. When a welcoming, open environment existed, parents tended to feel respected as equal and included members of their child’s care team. In contrast, environments that restricted parental presence or lacked resources for parental self-care could leave parents feeling like ‘watchers’, excluded from their child’s care.ConclusionsThe paediatric intensive care unit environment either welcomes and includes parents of dying children into the care team, or demotes them to the status of ‘watcher’. Such environments significantly influence the relationships parents form with healthcare staff, their ability to engage in elements of their parental role, and their experiences as a whole.     

Role of physical therapists in the weaning and extubation procedures of pediatric and neonatal intensive care units: a survey

BackgroundWeaning a patient from mechanical ventilation is a complex procedure that involves clinical and contextual aspects. Mechanical ventilation also depends on the characteristics of health professionals who work in intensive care.ObjectiveThis study described the organizational aspects associated with the physical therapist's performance in the weaning procedure from mechanical ventilation and extubation in neonatal, pediatric and mixed (neonatal and pediatric) intensive care units in Brazil.MethodsIn order to identify the existing intensive care units in Brazil, data from the National Health Facilities Census was used to enable the researchers to obtain information about registered units. A cross-sectional survey was carried out by sending an electronic questionnaire to 298 neonatal, pediatric and mixed intensive care units in Brazil.ResultsThis study assessed questionnaires from 146 intensive care units (49.3% neonatal, 35.6% pediatric and 15.1% mixed). A total of 57.5% of these units applied mechanical ventilation weaning protocols, and a physical therapist frequently conducted this procedure (66.7%). However, the clinician responsible for conducting the weaning and deciding when to do extubation varied regardless of ICU patient age profile. Regardless of the type of hospital or the type of units, most of these had a dedicated physical therapist. However, physical therapy care 24 h/7 days per week was predominantly in pediatric intensive care units (56.0%), and in public hospitals (45.9%). Moreover, when the physical therapist was available 24 h/7 days per week, (s)he was responsible for the mechanical ventilation extubation decision and patients were successfully extubated on the first attempt.ConclusionIn this survey, intensive care units using physical therapy assistance 24 h/7 days per week were associated with the use of a mechanical ventilation weaning protocol, an extubation decision and success commonly on the first attempt of extubation.     

Parental support needs during pediatric resuscitation: A systematic review

BackgroundResuscitation of a child is one of the most critical times that parents need support, and parental support is fundamental to providing family-centered care in high acuity settings. The aim of this systematic review was to appraise and synthesize studies conducted to examine the support needs of parents during resuscitation of their child from their own perspective.MethodThe PRISMA model guided the systematic literature search of Google Scholar, PubMed, Cochrane, Scopus, and Ovid for studies published until the end of 2020. Keywords used were: family support, family-centered care, family needs, resuscitation, CPR, children, neonatal, pediatric, family presence, family-witnessed, and parents.ResultsThere were 787 articles located. After reviewing for relevancy, 21 articles met criteria and were included in this review. Findings indicate the needs of parents during resuscitation of their child include: Spiritual and cultural support; Communication with the child before and after resuscitation; Professional behavior from staff; Receiving information; Presence at resuscitation; Trust in the resuscitation team; and Having physical and mental needs met.ConclusionParents have differing support needs when their child is resuscitated in the hospital, and meeting these needs is critical for providing family-centered care.     

Care of children and families in the CICU: A focus on their developmental,psychosocial, and spiritual needs

The staff of Patient and Family Support Services oversees the developmental, psychosocial, and spiritual care of the child in the cardiac intensive care unit. Staff collaborate with medical team members, as well as the patient's family, to promote holistic care. This article describes the roles and responsibilities of the child life specialist, the social worker, and the chaplain and identifies discipline-specific assessment techniques and interventions. The article highlights identified needs of children and their families, offering tools and interventions health care clinicians can use in the cardiac intensive care unit.     

Cardiovascular nurses' experiences of working in the COVID-19 intensive care unit: A qualitative study

BackgroundCardiovascular nurses’ skills and experiences of cardiac critical care, management of cardiovascular emergencies, and mechanical circulatory support have been considered vital in providing nursing care for COVID-19 patients in intensive care units during the COVID-19 pandemic. To our knowledge, there are no studies have focused on the contribution and experiences of cardiovascular nurses in the critical care of COVID-19 patients.ObjectivesTo explore the experiences of cardiovascular nurses working in a COVID-19 intensive care unit during the pandemic.MethodsThe study was conducted as a qualitative study with phenomenological approach in June-December 2020. Study data were gathered from ten cardiovascular nurses through semi-structured interviews.ResultsSix themes emerged from the interview data: the duties and responsibilities in a COVID-19 intensive care unit; the differences of COVID-19 intensive care unit practices from cardiovascular practices; the transferrable skills of cardiovascular nurses in a COVID-19 intensive care unit; the difficulties encountered working in a COVID-19 intensive care unit; the difficulty of working with personal protective equipment; and the psychosocial effects of working in a COVID-19 intensive care unit.ConclusionCardiovascular nurses made an important contribution to the management of nursing services with their experiences and skills in the COVID-19 pandemic.     

Information-seeking behaviours and decision-making process of parents of children with cancer

PurposeThis study aimed to explore the information-seeking behaviours, perceptions and decision-making experiences of parents of children with cancer by employing semi-structured interviews.Methods and sampleA qualitative research design was used to assess the information-seeking behaviours, perceptions and decision-making processes used by parents in Turkey whose children have cancer. Interviews were conducted with 15 parents of children with cancer using a semi-structured interview schedule. The interviews were recorded and transcribed verbatim.ResultsSix main issues emerged. Issues were related to parents' information needs, the sources of information, difficulties that the parents encountered when seeking information, the decision-making process, the factors affecting decision-making, and expectations from the health team. Information resources for parents included medical doctors and nurses, the internet, friends and the parents of other children who were staying in the hospital. The parents mostly sought information about their child's illness, prognoses, treatment, side-effects and care giving issues. The parents expressed that they were directed primarily by health care providers during their decision-making process.ConclusionsAdequate and systematic information pertaining to illness, treatment, prognosis and child care must be provided by health care professionals throughout the illness process. In addition, individual guidance and spare time are key components to helping parents make decisions about their children with cancer.     

Prevenir y tratar delirium en cuidados intensivos: hermenéutica de las vivencias del equipo de enfermería

ObjectiveTo understand the experiences in nursing care in the prevention and treatment of delirium in people hospitalized in intensive care units.MethodologyHermeneutic phenomenological qualitative study. The selection of participants was by intentional sampling: seven nursing assistants and eight nurses. Theoretical saturation was achieved. The phenomenological interview was applied to collect data from a central question and the analysis was carried out following the approaches of Heidegger's hermeneutical circle.ResultsFour significant themes emerged from the analysis: 1) Delirium prevention, 2) Pharmacological treatment, 3) Non-pharmacological treatment, and 4) Barriers to non-pharmacological treatment. These themes were accompanied by 35 interrelated units of meaning: in the first theme, the most repetitive units were communication, orientation, and family bonding; in the second was the use of pharmacological treatment only in the acute phase; in the third was the modification of the environment according to the patient's preference (where the family is a priority and strategies that provide cognitive and social stimulation can be reinforced), and in the fourth was the work overload for the nursing team.ConclusionsThe experiences of the nursing team in the prevention and treatment of delirium in critically ill patients highlight that communication allows an approach to the patient as a human being immersed in a reality, with a personal history, needs and preferences. Therefore, family members must be involved in these scenarios, as they can complement and support nursing care.     

What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?

ContextChildren with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most.ObjectivesTo explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home.MethodsTwenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains.ResultsForty-seven parents participated. Overall, highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. Lowest-rated domains included Spiritual and religious aspects of care and Cultural aspects of care. In exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children (P = 0.02). Furthermore, bereaved parents rated the Caregiver support at the end of life domain significantly higher than parents who were currently caring for their child (P = 0.04). No other significant differences in domain ratings were observed.ConclusionKnowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.     

Interprofessional Teamwork During Family Meetings in the Pediatric Cardiac Intensive Care Unit

ContextParents of children in the pediatric cardiac intensive care unit (CICU) report inadequate communication and a lack of empathy during conversations with their clinicians.ObjectiveTo assess quantitatively and qualitatively the contributions made by team members of different professions in communicating with parents during family meetings.MethodsProspective observational study. The study was conducted in the pediatric CICU at the Children's Hospital of Philadelphia. Subjects were members of the interprofessional team attending family meetings for patients admitted to the CICU longer than two weeks. We used quantitative conversation attribution and coding to compare durations of attendee contributions and contribution type by professional role. The SCOPE codebook and other quantitative codes drawn from best practices in family meetings were used to measure communication behaviors. A qualitative analysis of nurses' and social workers' contributions was used to identify themes not otherwise captured.ResultsAcross 10 meetings, physicians spoke for an average of 78.1% (SD 10.7%) of each meeting, nonphysicians 9.6% (SD 7.8%), and parents 17.4% (SD 12.2%). Parental understanding was assessed an average of 0.2 (SD 0.4) times per meeting. Parents expressed emotion an average of 4.2 times per meeting (SD 7.1), and the clinical team responded empathetically 2.2 times per meeting (SD 4.3). All clinician empathic responses were a minority of their overall contributions. Conversation was almost exclusively between physicians and families until physicians indicated other team members could contribute.ConclusionsCoordination of team members' roles in the meetings may improve parental engagement necessary for decision-making and empathic responses that are often missed.     

Children's Safety Initiative: A National Assessment of Pediatric Educational Needs among Emergency Medical Services Providers

Abstract

Objective. Emergency medical services (EMS) providers may have critical knowledge gaps in pediatric care due to lack of exposure and training. There is currently little evidence to guide educators to the knowledge gaps that most need to be addressed to improve patient safety. The objective of this study was to identify educational needs of EMS providers related to pediatric care in various domains in order to inform development of curricula. Methods. The Children's Safety Initiative-EMS performed a three-phase Delphi survey on patient safety in pediatric emergencies among providers and content experts in pediatric emergency care, including physicians, nurses, and prehospital providers of all levels. Each round included questions related to educational needs of providers or the effect of training on patient safety events. We identified knowledge gaps in the following domains: case exposure, competency and knowledge, assessment and decision making, and critical thinking and proficiency. Individual knowledge gaps were ranked by portion of respondents who ranked them “highly likely” (Likert-type score 7–10 out of 10) to contribute to safety events. Results. There were 737 respondents who were included in analysis of the first phase of the survey. Paramedics were 50.8% of respondents, EMT-basics/first responders were 22%, and physicians 11.4%. The top educational priorities identified in the final round of the survey include pediatric airway management, responder anxiety when working with children, and general pediatric skills among providers. The top three needs in decision-making include knowing when to alter plans mid-course, knowing when to perform an advanced airway, and assessing pain in children. The top 3 technical or procedural skills needs were pediatric advanced airway, neonatal resuscitation, and intravenous/intraosseous access. For neonates, specific educational needs identified included knowing appropriate vital signs and preventing hypothermia. Conclusions. This is the first large-scale Delphi survey related to pediatric prehospital education. Our results provide foundational information related to the educational needs of prehospital providers. Medical directors and educators can use the results to shape future curricular development.     

儿科ICU患儿家长的需求及其影响因素

目的分析儿科重症监护室(intensive care unit,ICU)患儿家长的需求现状,探讨其影响因素。方法便利抽样法选取2015年6-10月在长春市某三级甲等医院儿科ICU住院患儿的家长100名为研究对象,应用一般资料调查表、中文版重危患者家属需求量表对其进行问卷调查。结果儿科ICU患儿家长总体需求得分为(138.34±16.96)分,儿童重症监护室(pediatric intensive care unit,PICU)与新生儿重症监护室(neonatel intensive care unit,NICU)患儿家长一致认为保证患儿的病情是最重要的需求;文化程度、家庭月收入及患儿是否早产是儿科ICU患儿家长需求的影响因素,可解释患儿家长需求得分29.0%的变异量。结论儿科ICU患儿家长的需求总体处于较高水平,护理人员应根据不同影响因素给予针对性的健康指导,尽可能满足患儿家长的需求。     

Voices in the wilderness: Co-location meeting the needs of children in protective care

ObjectiveTo explore how access to a family medicine clinic co-locating with the Children’s Aid Society (CAS) of Hamilton in Ontario helped meet the unique needs of children in care.DesignQualitative research using semistructured face-to-face and telephone interviews.SettingThe CAS of Hamilton.ParticipantsNineteen foster parents.MethodsStakeholders were invited to participate with flyers posted in the clinic, notices that were mailed to foster parents, personal invitations that were distributed during clinic visits, and an internal memo that was distributed to the CAS staff. Informed consent and assent where appropriate was obtained before an interview was started. Interviews were audiorecorded when and where feasible, transcribed, and subsequently underwent inductive, thematic analysis. Common themes evolved by consensus.Main findingsFoster parents valued the family medicine clinic co-locating with the CAS. The co-location helped children in care to know that there were others in similar circumstances. Foster parents learned from and shared parenting skills with one another, which resulted in developing confidence in the care they provided. The clinic became a neutral place for children in care, foster parents, and birth parents. The clinic team gathered the children’s complete health records and was responsible for sharing this information when appropriate.ConclusionAccess to a family medicine clinic designed specifically for children in care that co-located with the CAS enhanced not only the planning, management, and evaluation of care, but also provided a consistency that was not found in other parts of the children’s lives; this helped generate trusting relationships over time. The co-location provided a strong spoke in the circle of care.     

The enablers and barriers to children visiting their ill parent/carer in intensive care units: A scoping review

AimThe aim of the study was to identify the enablers and/or barriers to children visiting their ill parent/carer in intensive care units by examining the visiting policies as practiced or perceived by nurses and experienced or perceived by parents and caregivers.Review methodThis is a scoping review following Joanna Briggs Institute Protocol Guidelines.Data sourcesAn extensive literature search of Cumulative Index of Nursing and Allied Health Literature, Medical Literature Analysis and Retrieval System Online, PsychINFO, PubMed, and Excerpta Medica dataBASE databases, using key terms, was conducted between May 2019 and July 2020; studies published between 1990 and 2020 were considered for inclusion. Double screening, extraction, and coding of the data using thematic analysis and frequency counts were used.ResultsFifteen barriers, 19 facilitators, nine situationally contingent factors, and six personal judgement considerations were identified that influenced children visiting their ill parent/carer in intensive care units. Most barriers (n = 10) were related to organisational factors including restrictive policies, nurses' level of education, age, working hours, nurses' attitudes, and lack of required skills to promote emotional resilience and/or to communicate with children. Family perception factors relating to parents' perceptions, attitudes and concerns of staff/parents, and anticipated behaviours of children were also identified as both barriers and facilitators.ConclusionsThere is a lack of consistency in the application of policies and procedures to facilitate children visiting their loved ones in an intensive care unit. Without key involvement from the nurses and healthcare team, there may have been opportunities lost to optimise family-centred care practices in critical care settings.     

Can virtual reality reduce pain and anxiety in pediatric emergency care and promote positive response of parents of children? A quasi-experimental study

AimTo evaluate the effectiveness of virtual reality to reduce pain and anxiety in pediatric patients during venipuncture procedure in emergency care and the behavioral response of their parents/companions.BackgroundVirtual reality is being used as a source of distraction in children undergoing invasive procedures.MethodsQuasi-experimental study with 458 children (from 2 to 15 years) who attended a pediatric emergency service from September 2019 to April 2021. An intervention based on virtual reality as a distraction method during venipuncture procedure was applied. The level of pain and anxiety of children and attitude of parents/companions were assessed. Ordinal and binary logistic regressions were applied.ResultsA protective effect of using virtual reality was observed in the intervention group both for the absence of pain (−4.12; 95 % CI: −4.85 to −3.40) and anxiety (−1.71; 95 % CI: −2.24 to −1.17) in children aged between 2 and 15 years. A significant reduction in the blocking response of the accompanying parents (−2.37; 95 % CI: −3.017 to −1.723) was also observed.ConclusionsVR is effective in reducing pain and anxiety in children during venipuncture in emergency care. A positive attitude of the parents during the invasive procedure to their children was found.