Research on the comprehensive child life intervention program (CCLIP) for adjusting medical fear in children with central nervous system (CNS) cancers: a randomized controlled trial study protocol.

BACKGROUND: Medical fear is a common psychological reaction in hospitalized children, especially during radiotherapy for central nervous system (CNS) cancers. This fear not only causes negative emotions such as anxiety and depression but also affects children's quality of life and treatment outcomes. It is exacerbated by factors such as unfamiliar environments during radiation therapy and separation from parents. Child Life, as a professional service, offers physical and mental support to children through medical understanding and psychological preparation, addressing their social and psychological needs, among other things. This study aims to construct a comprehensive Child Life intervention program (CCLIP), consisting of four key components: psychological adjustment and preparation, therapeutic play, pain management and coping strategies, and family support. The integration of effective intervention methods aims to reduce medical fear in children undergoing radiotherapy, promote psychological well-being, improve treatment compliance, and enhance quality of life. METHODS: This study is a protocol for a randomized controlled trial. Using a random number table method, we plan to recruit 38 eligible children who meet the inclusion criteria and then randomize them into two distinct groups: the intervention group and the control group. The intervention group will receive the CCLIP, and the control group will receive standardized care. Data will be collected through questionnaires and on-site assessments during the one-month intervention period at four distinct time points: the day of admission (T0), the first radiotherapy positioning (T1), mid-radiotherapy (T2), and postradiotherapy (T3). The primary outcome measure is the effectiveness of the CCLIP in reducing medical fear among children receiving radiation treatment for CNS cancers. Secondary outcomes include anxiety, depression, radiation adherence, quality of life among children, and parental satisfaction. DISCUSSION: This study aims to alleviate medical fear among children with CNS tumors undergoing radiotherapy through the implementation of the CCLIP while enhancing their mental health and quality of life. The expected outcomes of this research include providing effective intervention strategies for clinical practice, improving the treatment experience and long-term prognosis of children, and having positive impacts on children and their families. TRIAL REGISTRATION: This study is registered at the Chinese Clinical Trial Registry, ChiCTR2400082622. Registered 2 April, 2024.

"Look at You Having Fun With Your Markers in Here!": Child Life Specialists' Countering of Infantilizating Narratives in Adult Oncology.

Child life specialists are clinically trained and educated healthcare professionals who work in both healthcare environments and the community to address the needs of ill children and their families. However, child life specialists have previously reported potential for their role, responsibilities, and scope of practice to be misunderstood by their clinical colleagues. Using a narrative methodology, this paper presents the composite narrative of Diane, whose story encompasses the stories of the four child life specialists working in adult oncology environments in Ontario, Canada. Diane's narrative is a counter-story, which counters common assumptions, beliefs, and attitudes about child life specialists. Through spending significant time narrating the multitude of tasks that are encompassed within her scope of care, Diane reaffirms her identity as a valuable member of an interprofessional adult oncology team and counters infantilizing assumptions that she is merely a babysitter or child entertainer. Her story highlights how, while the introduction of child life specialists to adult healthcare environments is new, the work they do is of great benefit to families and their children. The lack of understanding from clinical colleagues of the role of child life specialists, however, hinders not only the development of relationships between colleagues, but also the care for these families.

The imperative of the child life profession in KSA in transforming the quality of pediatric healthcare.

Saudi Arabia has made substantial advancements in its pediatric healthcare infrastructure. However, substantial gaps persist in addressing hospitalized children's emotional safety, and psychosocial and developmental needs. Internationally, the child life profession has evolved over decades to specifically address these needs, through interventions such as therapeutic play, age-appropriate patient education, and family support. This article evaluates the imperative for integrating the child life profession into healthcare services in Saudi Arabia to transform the quality of pediatric healthcare. An analysis of the current landscape revealed gaps in pediatric psychosocial care. These gaps are listed as national priorities in the health transformation program aimed at improving healthcare quality and enhancing well-being. Integrating the child life profession can help achieve these objectives for children and families in Saudi Arabia. This article highlights the multifaceted benefits of the child life profession in improving patient experiences, healthcare delivery efficiency, pediatric healthcare quality, and the overall well-being of children and families. Strategies for phased implementation, involving healthcare institutions, academic partners, relevant non-profit partners, and policymakers, are proposed.

Access to legacy-oriented interventions at end of life for pediatric oncology patients: A decedent cohort review.

BACKGROUND: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions. METHODS: In this retrospective decedent cohort study, we examined demographic and clinical characteristics from a sample of 678 pediatric oncology patients who died between 2015 and 2019. Bivariate analysis assessed differences between patients who received any versus no legacy-oriented intervention. Uni- and multivariable logistic regression models assessed associations of baseline characteristics and likelihood of receiving legacy-oriented intervention. Further multivariable analysis explored joint effects of significant variables identified in the univariable analysis. RESULTS: Fifty-two percent of patients received a legacy-oriented intervention. Older adolescents (≥13 years) were less likely (odds ratio [OR]: 1.73, p = .007) to receive legacy-oriented interventions than younger ones. Patients with home/hospice deaths were also less likely (OR: 19.98, p < .001) to receive interventions compared to patients who passed away at SJCRH locations. Hispanic patients (OR: 1.53, p = .038) and those in palliative care (OR: 10.51, p < .001) were more likely to receive interventions. No significant race association was noted. CONCLUSION: All children and adolescents with cancer deserve quality care at end of life, including access to legacy-oriented interventions, yet nearly half of patients in this cohort did not receive these services. By identifying demographic and clinical characteristics associated with decreased odds of receiving legacy-oriented interventions, healthcare professionals can modify end-of-life care processes to improve access. Introducing legacy-oriented interventions early and increasing exposure in community spaces may enhance access to legacy-oriented interventions for pediatric oncology patients.

Integration of Certified Child Life Specialists to Decrease in Periprocedural Benzodiazepine Use: A Pilot Study.

INTRODUCTION: Periprocedural anxiety is common in pediatric patients and is characterized by tension, anxiety, irritability, and autonomic activation. Periprocedural anxiety increases during certain events including admission to the preoperative area, separation from caregivers, induction of anesthesia, and IV placement. A study of children aged 2-12 showed that perioperative anxiety in children may be influenced by high parental anxiety and low sociability of the child. While these are nonmodifiable variables in the perioperative setting, there are numerous ways to ameliorate both parental and patient anxiety including the use of certified child life specialists (CCLSs) to aid in child comfort. In this study, our objective was to evaluate the integration of CCLS in our perioperative setting on the rate of benzodiazepine use. METHODS: We used a prospectively maintained database to identify patients undergoing outpatient elective surgical and radiologic procedures from July 2022 to September 2023 and January 2023 to September 2023 respectively. CCLSs were used to work with appropriately aged children in order to decrease the use of benzodiazepines and reduce possible adverse events associated with their use. RESULTS: A total of 2175 pediatric patients were seen by CCLS in same day surgery from July 2022 to September 2023. During this period, midazolam use decreased by an average of 11.4% (range 6.2%-19.3%). An even greater effect was seen in the radiologic group with 73% reduction. No adverse events were reported during this period. CONCLUSIONS: CCLSs working with age-appropriate patients in the periprocedural setting is a useful adjunct in easing anxiety in pediatric patients, reducing the need for periprocedural benzodiazepine administration and the risk of exposure to unintended side effects.

Legacy in paediatrics: A concept analysis.

AIM: To provide an analysis of legacy and legacy-oriented interventions in paediatric healthcare. DESIGN: Walker and Avant's method of concept analysis. METHODS: Using Walker and Avant's method, three defining attributes of the concept were determined, followed by antecedents, consequences, and empirical referents of legacy. RESULTS: In paediatrics, legacy is co-authored in relationships, has the capability to outlive the person or event it represents, and elicits the essence of a person or experience. Receiving legacy-oriented interventions are not a prerequisite for having a legacy, nor is death. CONCLUSION: Engaging in purposeful, individualized legacy-oriented interventions can improve coping in paediatric patients, families, and providers. By understanding the concept of legacy, providers are better equipped to provide care honouring the unique personhood, relationships, and strengths of children and families in even the most dire circumstances. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Understanding the scope and purpose of legacy in paediatrics assists providers in improving patient- and family-centred outcomes by designing interventions that facilitate long-term coping in patients facing a loss of or significant change in health, normalcy, or life. IMPACT: Legacy-oriented interventions are provided at most children's hospitals in the United States, yet no widespread consensus on foundation or scope has been determined. This concept analysis provides evidence-based guidelines for policy and practice in creating legacy for and with children, providing opportunities to improve quality of care for young patients and their families around the world. REPORTING METHOD: N/A. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

"There's So Much More Support We Could Have Provided": Child Life Specialists' Stories of the Challenges Working in Adult Oncology.

A cancer diagnosis in patients who are parents of minor children is uniquely stressful for both parents and children. Children need developmentally appropriate information and support to help reduce their fears and worries. Child life specialists (CLSs) are health professionals who work in pediatric environments to support children and families with the stress and uncertainty of illnesses. Increasingly, CLSs have been called upon to support children of patients in adult clinical environments. Our objective was to elucidate CLS caregiving narratives related to working with children of adult cancer patients. We used narrative inquiry to interview four CLSs working in adult oncology. Canadian CLSs who have experience providing care for children and families affected by parental cancer were recruited via convenience sampling. We used narrative analysis methods that included multiple close reads of the data, generating narrative themes, and noting conflicts or tensions in the data. CLSs' caregiving stories often highlighted the complexities of working in an adult oncology environment. Their narratives included challenges in providing optimal care to the children, including family-level barriers (such as parental wishes to withhold information from their children) and systemic barriers (such as late referrals and limited options for bereavement support). CLS participants identified several challenges of working with families in adult oncology. The CLSs highlighted a desire for additional institutional support for children of adult oncology patients and for themselves working in these environments in order to achieve what they believed to be optimal care.

The certified child life specialist: A novel resource in the pediatric primary care clinic for managing children's pain during routine immunizations.

This study evaluated the effect of the Certified Child Life Specialist (CCLS) on pediatric pain and pain management during routine immunization administration in the pediatric primary care clinic. Children 4-12 years of age (n = 125) presenting for a well child physical examination at a rural primary care clinic were selected to receive standard nursing care or standard nursing care plus CCLS support during routine immunization administration. Patient reported pain was measured using the Faces Pain Scale-Revised (FPS-R), and patient behavioral responses were measured during immunization administration using the Children's Emotional Manifestation Scale (CEMS). The performance of psychosocial interventions and administration of topical pain-relieving interventions were measured between both groups. CCLS support was associated with fewer negative emotional behaviors during immunization administration among 7- to 12-year-old children and a significantly higher provision of psychosocial interventions and topical pain-relieving interventions among all ages. This study demonstrates that the presence of a CCLS can increase the provision of psychosocial and pain-relieving interventions and reduce distress during immunization administration in a busy pediatric primary care clinic.

Effects of Child Life intervention on the symptom cluster of pain-anxiety-fatigue-sleep disturbance in children with acute leukemia undergoing chemotherapy.

Objective: This study aims to explore the application effect of Child Life intervention on pain, anxiety, fatigue, and sleep disturbance in children with acute leukemia. Methods: In a single-blinded, parallel-group randomized controlled trial, 96 children with acute leukemia were randomized to either the intervention group, which received Child Life intervention twice a week for 8 weeks, or the control group, which received routine care. Outcomes were evaluated at baseline and day 3 postintervention. Results: All of the participants completed the study. Compared with the control group, the intervention group showed a significant reduction in pain, anxiety, fatigue, and sleep disturbance (P â€‹< â€‹0.001). However, no significant differences were observed in the disorders of excessive somnolence. Conclusions: Child Life intervention can effectively improve pain, anxiety, fatigue, and sleep disturbance in children with acute leukemia undergoing chemotherapy. The results suggest that symptom cluster management intervention based on Child Life provided a promising approach for simultaneously treating multiple symptoms within a cluster.

Assessing Child Life Specialists' Management of Challenging Behaviors in Autistic Pediatric Patients.

Given that autistic children are hospitalized at higher rates than neurotypical peers, it is important to understand the autism-specific preparedness of healthcare providers. Certified Child Life Specialists (CCLSs) play a crucial role in pediatric hospitalizations by providing socioemotional support and coping strategies. The present study assessed perceived competency and comfort levels among 131 CCLSs regarding the management of challenging behaviors exhibited by autistic pediatric patients, including aggression and self-injury. All participants reported experiences providing care to autistic children who exhibited challenging behaviors, but very few reported both high perceived competency and high comfort in managing these behaviors. Autism-specific training positively correlated with perceived competency and comfort. These results have implications for providing autistic children high quality hospital care.

Implementing a psychosocial care approach in pediatric inpatient care: process evaluation of the pilot Child Life Specialist program at the University Hospital of Munich, Germany.

Background: Child Life Specialists (CLSs) are psychosocial care professionals of child development and health who focus on the individual needs and rights of young patients. CLSs accompany sick children and focus on the children's perspective and their reality of life. CLS programs are already established in clinical settings in the United States and other Anglophone countries but have not yet been piloted in the German health care setting, neither has their implementation been evaluated in this context. This study aimed to explore the factors influencing the implementation of a pilot CLS program in pediatric inpatient care at the Dr. von Hauner Children's Hospital at the University Hospital of Munich, Germany. Methods: Building on methods commonly employed in the evaluation of complex interventions, we developed a logic model to guide the process evaluation of our program. Semi-structured interviews with four groups of stakeholders were conducted in person or via videoconferencing between June 2021 and January 2022. Data was analyzed collectively using the method of qualitative content analysis by Mayring. Results: Fifteen individual interviews were conducted with patients (children aged 5-17 years, n = 4), parents (n = 4), CLSs (n = 4) and other health professionals (n = 3). Factors influencing the implementation were identified on three levels: system, staff and intervention. On the system level, a clearer definition of CLSs' tasks and responsibilities was perceived as important and would likely lead to a delineation from other (psychosocial) professions and a reduction of potential resistances. On the staff level, lacking training opportunities and feelings of being insufficiently skilled were limiting the CLSs professional self-confidence. On the intervention level, the emergence of a unique characteristic of the CLSs' work (i.e., preparation for medical procedures) supported the acceptance of the new program. Conclusions: The implementation of a CLS program into an established hospital system with existing psychosocial care services is challenging. Our results contribute to a better understanding of implementation processes of such an additional psychosocial care approach and provide recommendations for addressing upcoming challenges.

Certified Child Life Specialist role in implementation of individualized coping plans for children receiving botulinum toxin injections.

PURPOSE: The purpose of this paper is to describe the implementation of evidence-based, individualized coping plans and to compare the rates of child anxiety, child cooperation, and parent anxiety before and after implementation of these coping plans for children receiving recurring BoNT-A injections emphasizing the role of Certified Child Life Specialists (CCLSs) within the interdisciplinary team approach. DESIGN AND METHODS: A retrospective chart review was conducted for children receiving BoNT-A injections at a Physical Medicine clinic pre- and post-implementation of the coping plan. Descriptive statistics were used to evaluate care plan implementation, child cooperation, child anxiety, and parent anxiety. RESULTS: Post-implementation of coping care plans, children experienced improved cooperation during BoNT-A injections. Parental anxiety decreased once coping plans were implemented. Documentation improved after the implementation of coping plans specific to areas involving cooperation, child's anxiety and distress, and parental anxiety and distress. It was also noted that there was an increase in child anxiety assessments within documentation. PRACTICE IMPLICATIONS: CCLS were able to utilize their expertise to collaboratively create individualized coping care plans to increase child's cooperation and decrease parental anxiety during BoNT-A injections.

Effectiveness of training before unsedated MRI scans in young children: a randomized control trial.

BACKGROUND: Young children requiring clinical magnetic resonance imaging (MRI) may be given general anesthesia. General anesthesia has potential side effects, is costly, and introduces logistical challenges. Thus, methods that allow children to undergo awake MRI scans are desirable. OBJECTIVES: To compare the effectiveness of mock scanner training with a child life specialist, play-based training with a child life specialist, and home book and video preparation by parents to allow non-sedated clinical MRI scanning in children aged 3-7 years. MATERIALS AND METHODS: Children (3-7 years, n=122) undergoing clinical MRI scans at the Alberta Children's Hospital were invited to participate and randomized to one of three groups: home-based preparation materials, training with a child life specialist (no mock MRI), or training in a mock MRI with a child life specialist. Training occurred a few days prior to their MRI. Self- and parent-reported functioning (PedsQL VAS) were assessed pre/post-training (for the two training groups) and pre/post-MRI. Scan success was determined by a pediatric radiologist. RESULTS: Overall, 91% (111/122) of children successfully completed an awake MRI. There were no significant differences between the mock scanner (89%, 32/36), child life (88%, 34/39), and at-home (96%, 45/47) groups (P=0.34). Total functioning scores were similar across groups; however, the mock scanner group had significantly lower self-reported fear (F=3.2, P=0.04), parent-reported sadness (F=3.3, P=0.04), and worry (F=3.5, P=0.03) prior to MRI. Children with unsuccessful scans were younger (4.5 vs. 5.7 years, P<0.001). CONCLUSIONS: Most young children can tolerate awake MRI scans and do not need to be routinely anesthetized. All preparation methods tested, including at-home materials, were effective.

Developmentally Appropriate Care of Pediatric Patients in the Perioperative Setting.

Pediatric patients do not undergo procedures exclusively at pediatric specialty facilities. Many perioperative nurses will care for a pediatric patient at some point in their career. Children and their caregivers often experience elevated levels of anxiety during the perioperative experience. Possessing knowledge of the child's age and developmental stage and using effective communication techniques can decrease this anxiety. This article presents insights into the stages of pediatric cognitive and psychosocial development and special pediatric health care considerations. Approaching and interacting with a child in a manner appropriate for their age and developmental stage can foster a more trusting nurse-child-caregiver relationship and reassure the caregiver that the perioperative team is providing their child with safe, high-quality care. Also included are five hypothetical case studies that illustrate effective communication styles and developmentally appropriate techniques that personnel can apply during the pediatric patient's perioperative experience.

Supporting Children and Families in Medical Settings: Insights from Child Life Specialists During the COVID-19 Pandemic.

Medical settings can be frightening and stressful places for pediatric patients and their families. During the COVID-19 pandemic fear and anxiety associated with receiving medical care increased as medical facilities dramatically altered the way they functioned in attempts to stop the spread of the virus. Certified Child Life Specialists (CCLSs) are medical professionals who provide psychosocial support for pediatric patients and their families by helping them understand and cope with medical procedures and the medical environment. In this role, CCLSs are likely to have important insights into the experiences and needs of pediatric patients and their families during COVID-19. Using a mixed-methods design, 101 CCLSs completed an online survey and 15 participated in follow-up interviews examining their experiences with and observations of children and families in medical environments during the pandemic. Participants emphasized a need to maintain a focus on child- and family-centered care for the well-being of patients and their families. While recognizing the need to socially distance to limit the spread of COVID, participants expressed concern about restrictive policies that did not balance the physical and mental health needs of patients and families. Participants also discussed the important role of child life services during the pandemic and the unique and multifaceted contributions CCLSs made to support patients, families, other medical professionals, and communities. Recommendations for supporting children and families in medical environments moving forward are discussed in light of lessons learned during the pandemic.

Exploring the implementation of child life services with facility dogs.

Many children's hospitals around the United States have programs in which a trained facility dog goes to work daily with a psychosocial healthcare worker, typically a Certified Child Life Specialist (CCLS). CCLSs help children and their families cope with the stress of a healthcare experience by utilizing evidence-based, developmentally appropriate interventions. The purpose of this study was to explore how CCLSs incorporate facility dogs into their treatments and gain their perspectives on handling a facility dog. Participants, four CCLSs, completed a checklist, which assessed patients seen by facility dogs for 10 workdays, and a semi-structured interview. Participants primarily saw patients of ages three to five years and aided with general anxiety and coping support. Findings indicated the dog's specific training, therapeutic value, and ability to bond with patients allowed these interactions to be successful and impactful. This study provides information about the benefits of facility dogs for child life programs and presents data for programs that are considering incorporating this therapeutic modality into their services offered.

Autism Comes to the Pediatric Hospital: Perspectives of Child Life Specialists.

The hospital setting may be especially difficult for pediatric patients on the autism spectrum and their families compared to those not on the spectrum. Child life specialists are healthcare professionals specifically trained to support parents and their children and help prepare them for hospital procedures. Because of this specialized skill set, these professionals likely have a wealth of expertise to share relevant to caring for autistic patients. This study aimed to understand 21 child life specialists' experiences working with patients on the spectrum. Our findings highlighted the following themes: Parents are the Experts, Proactive and Individualized Care, Disclosure, and Hospital-Wide Suggestions to Improve Patient Care. We discuss the practice implications of these findings on the healthcare experiences of pediatric patients on the spectrum.

Child Life Specialists Decrease Procedure Time, Improve Experience, and Reduce Fear in an Outpatient Blood Drawing Lab (CLS Decrease Procedure Time).

Children can experience extreme fear when undergoing medical procedures, including blood draws. A growing body of evidence points to the benefits of Child Life Specialists supporting children throughout medical procedures in various medical settings. This prospective cohort study aimed to describe the impact of Child Life Specialist facilitated play on children's fear and caregiver satisfaction in an outpatient blood drawing lab. A nonrandomized convenience sample of 150 children and their caregivers were enrolled. Seventy-five patients received the Child Life Specialist intervention during their blood draw, while the remaining 75 patients were enrolled as controls. Children and caregivers in the intervention group spent less time in the procedure room, with a median time of 3 min (interquartile range: 2-5) as compared to 5 min (interquartile range: 5-6; P < .001) for the control group. Caregivers in the intervention group reported the atmosphere (P = .032) and experience (P < .001) more positively, and children reported lower fear scores (P = .007) as compared to the control group. The findings of this study suggest that Child Life Specialist interventions in pediatric outpatient blood drawing labs improve satisfaction and reduce fear.

'Smiles and laughter and all those really great things': Nurses' perceptions of good experiences of care for inpatient children and young people with intellectual disability.

AIM: To understand what constitutes a good experience of care for inpatient children and young people with intellectual disability as perceived by nursing staff. DESIGN: Interpretive qualitative study. METHODS: Focus groups with clinical nursing staff from speciality neurological/neurosurgical and adolescent medicine wards across two specialist tertiary children's hospitals in Australia were conducted between March and May 2021. Data analysis followed interpretative analysis methods to develop themes and codes which were mapped to a conceptual model of safe care. RESULTS: Six focus groups with 29 nurses of varying experience levels were conducted over 3 months. Themes and codes were mapped to the six themes of the conceptual model: use rapport, know the child, negotiate roles, shared learning, build trust and relationships, and past experiences. The analysis revealed two new themes that extended the conceptual model to include; the unique role of a paediatric nurse, and joy and job satisfaction, with a third contextual theme, impacts of COVID-19 pandemic restrictions. With the perspectives of paediatric nurses incorporated into the model we have enhanced our model of safe care specifically for inpatient paediatric nursing care of children and young people with intellectual disability. CONCLUSION: Including perceptions of paediatric nurses confirmed the position of the child with intellectual disability being at the centre of safe care, where care is delivered as a partnership between nursing staff, child or young person and their parents/family and the hospital systems and processes. IMPACT: The enhanced model offers a specialized framework for clinical staff and health managers to optimize the delivery of safe care for children and young people with intellectual disability in hospital.