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.

"Fitting the Pieces Together": The Experiences of Caregivers of Children With Medical Complexity.

BACKGROUND AND OBJECTIVES: Families of children with medical complexity manage a multitude of care responsibilities that must be carefully coordinated alongside typical family roles and activities. Currently, little is known about this experience from the perspectives of caregivers; therefore, the purpose of this study was to explore the experience of caregiving for a child with medical complexity while identifying unmet medical and psychosocial needs. METHODS: Nineteen caregivers were recruited from the pediatric complex care clinic at an academic medical center in the United States. Each participant completed an in-depth, narrative interview that was audio-recorded and transcribed; transcripts were analyzed using an inductive coding approach. RESULTS: Participants described their caregiving experiences along 4 themes: (1) the many responsibilities of caregiving, (2) insufficient respite care and skilled support, (3) financial limitations and costs of care, and (4) challenges with mental health and wellbeing. Participants identified unmet needs in 6 dimensions: (1) transition stress, (2) communication across teams, (3) learning to be an advocate, (4) purposefully inclusive environments, (5) finding connections and community, and (6) the challenges of coronavirus disease 2019. CONCLUSIONS: Caregivers of children with medical complexity identify a host of experiences and unmet needs that challenge the physical, emotional, and psychosocial wellbeing of themselves and their families. With more attention to the holistic experience of caregiving for this population, providers and teams can better anticipate needs and provide services and programs that enhance caregiver and family wellbeing simultaneously.

"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions.

BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known about how bereaved families perceive the concept of legacy that these practices are meant to address. Emerging research challenges the view of legacy as a standardized, handheld keepsake item but rather as a summation of qualities and experiences that affect those left behind. Therefore, more research is needed. AIM: To explore the legacy perceptions and experiences of bereaved parents/caregivers in an effort to inform legacy-oriented interventions in pediatric palliative care. DESIGN: In this qualitative, phenomenological study grounded in social constructionist epistemology, bereaved parent/caregivers completed a semi-structured interview about their legacy perceptions and experiences. The interviews were audio-recorded, transcribed, and analyzed using an inductive, open coding approach grounded in psychological phenomenology. SETTING/PARTICIPANTS: Participants were parents/caregivers and one adult sibling of children (ages 6 months-18 years) that died between 2000 and 2018 at a children's hospital in the Southeastern United States and spoke English as their primary language. RESULTS: Sixteen parents/caregivers and one adult sibling were interviewed. Participants' responses converged across three themes: (1) definitions of legacy, including traits and characteristics, impacts on others, and the child's enduring presence; (2) manifestations of legacy, such as tangible items, experiences, traditions, and rituals, and altruism; and (3) factors perceived to affect legacy experiences, including characteristics of the child's death and one's personal grief process. CONCLUSION: Bereaved parents/caregivers define and experience their child's legacy in ways and manifestations that conflict with current legacy building interventions used in pediatric healthcare settings. Thus, an immediate shift from standardized legacy-oriented care to individualized assessment and intervention is needed to provide high-quality patient- and family-centered pediatric palliative care.

An evidence-based protocol for sensory soothing in paediatric intensive care.

In recent years, an increasing body of literature has highlighted the significant sequelae of a paediatric intensive care unit admission for children and their families. More innovative bedside approaches are needed to support children's coping and development and help minimize the use of sedatives, given their known deleterious effects. To support nursing staff in managing agitation in critically ill infants and children, a 'Sensory Pyramid' program was built in collaboration with occupational therapists, child life specialists and critical care nursing staff at an academic medical center in the United States. Anchored in evidence-based and developmentally appropriate non-pharmacologic sensory soothing techniques, the protocol outlines escalating comfort interventions nurses can employ that are safe and feasible for implementation by bedside staff and families.

Hospitalized children's perceptions of legacy: 'A symbol of yourself that you leave behind'.

BACKGROUND: Legacy building is a developmentally grounded, trauma-informed and family-centred psychosocial intervention designed to bolster patient and family resilience through collaborative activities and meaning making. However, little is known about the effects of these interventions, partially because of a lack of clarity regarding how children of different developmental levels understand the concept of legacy. Therefore, this study explored the ways in which hospitalized children defined the concept of legacy. METHODS: Semi-structured interviews were conducted with 45 hospitalized children (ages 6 to 18 years) on the acute and critical care units of an academic children's medical centre. Interviews were audio-recorded and transcribed verbatim; transcripts were independently coded by at least two members of the research team using an inductive, line-by-line approach; and codes were categorized and assembled into four overarching themes, resulting in a developmental typology of the concept of legacy. RESULTS: Participants described legacy as (1) concepts, actions or feelings motivated by the future; (2) represented through both tangible and intangible means; (3) informed by personal, educational, experiential and ideological sources; and (4) experienced as good, bad or neutral. CONCLUSIONS: The findings of this study demonstrate that hospitalized children are aware of and can articulate an emerging concept of legacy - one that mirrors the progression of cognitive complexity shaped by their unique personal life and healthcare experiences. The developmental typology presented in this study can be a useful starting point for clinicians as they present and facilitate legacy building interventions throughout a child's hospital stay.

Little time, lasting impact: Bereaved caregiver perceptions of legacy in perinatal and infant loss.

BACKGROUND: Legacy interventions are standard in most children's hospitals, but little is known about how bereaved parents understand and describe the concept of legacy that these interventions are designed to Address. The aim of this qualitative study was to understand the legacy experiences and perceptions of parents who have experienced perinatal or early infant (less than three months of age) loss. METHODS: Grounded in constructionist epistemology and phenomenological qualitative traditions, ten bereaved parents completed an in-depth phenomenological interview regarding their perceptions of and experiences with the legacy of their deceased child. Interviews were transcribed verbatim and analyzed using an open, inductive coding process to illuminate the essence of participants' experiences. RESULTS: Three themes were identified: 1) legacies are composed of memories and experiences that have a lasting effect on others; 2) healthcare experiences both generate and participate in infants' legacies; and 3) parents' legacy perceptions are shaped by cultural conceptions, spiritual beliefs, and grief experiences. Parents described experiences and interactions with community members and healthcare providers that honored or challenged their perceptions of their child's unique legacy. CONCLUSIONS: In the context of perinatal or early infant loss, bereaved parents describe legacy as enduring, unique to each child and family, and heavily influenced by healthcare experiences and staff relationships. Parent-led, legacy-oriented interventions are needed in maternal/fetal, labor/delivery, and neonatal intensive care settings to support parent coping with loss.

Helping Children Cope with Loss: Legacy Interventions for the Grieving Classroom.

Early experiences of death and loss have a significant impact on children's coping and development across the lifespan, whether the deceased was a family member, friend, or even classmate. Given the sense of community and continuity that children often garner in schools, teachers are uniquely positioned to tailor and facilitate grief supports to meet the developmental and coping needs of their students in response to loss, especially in the case of a classmate's death. Legacy building interventions, though healthcare-derived, have internationally been applied to promote self-expression and meaning making for grieving children and families; the underlying theory and practice of such interventions may render them useful even in classroom environments. Combining art-based activities with storytelling and reflection, legacy building activities may promote awareness and understanding of death in children and adolescents while encouraging adaptive grief responses. This paper describes how teachers may apply legacy building interventions to support students experiencing the death of a classmate. Two sample curricular plans are provided, one targeted towards elementary school children, the other towards middle and high school students. Although these resources appear ready for immediate implementation, it is essential that teachers adapt them - based on their unique classroom, school system, and sociocultural context - to best meet the needs of grieving students.

An Interdisciplinary Hospital-Based Committee to Improve Pediatric Bereavement Care.

Although frequently overshadowed by adult mortality rates and bereavement care needs, the death of a child can significantly jeopardize the physical, psychosocial, and emotional health of surviving parents, caregivers, and family members. Unfortunately, researchers have only recently begun to explore the trajectory of pediatric bereavement care needs. As an ongoing public health concern, health care institutions and related organizations must partner with interdisciplinary care providers and bereaved families to design effective and sustainable bereavement supports in their communities. Therefore, the purpose of this article is to describe the development and accomplishments of an interdisciplinary bereavement committee at a children's hospital within an academic medical center. By relying on available empirical evidence and close collaboration with bereaved parent members, this effort has generated sizeable practice improvements and new service offerings within the organization, local community, and the individual patients and families the institution serves.

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review.

BACKGROUND: Legacy has been invoked as a means for strengthening human attachments, continuing bonds, and ensuring that individuals will be remembered; however, little is known about the spectrum of approaches to, outcomes associated with, and best practices for legacy interventions. AIM: To systematically review research on legacy perceptions and interventions in pediatric and adult palliative care recipients. DESIGN: A systematic mixed studies review synthesizing quantitative, qualitative, and mixed-methods study findings using PRISMA guidelines. DATA SOURCES: PubMed, PsycINFO, and CINAHL databases were searched on October 1, 2020. GRADE criteria were used to assess quality of quantitative reports, and the Johns Hopkins Evidence Level and Quality Guide was used to rate qualitative, mixed methods, and review articles. Data were synthesized using integrative thematic analysis. RESULTS: The 67 studies reviewed describe a variety of legacy perceptions and interventions with adult and pediatric patients receiving palliative care. Statistically significant improvements in various dimensions of wellbeing are documented, with significant reduction in incidence and symptoms of depression in adults. Studies highlight the utility, feasibility, and perceived benefits of legacy interventions according to adult patients and their caregivers, and parents/caregivers of pediatric patients. CONCLUSIONS: Though future research with high-quality, experimental designs is needed, the positive outcomes associated with legacy interventions are documented in adult patient populations; additionally, the application of legacy interventions for children with serious illnesses receiving palliative care is reasonable based on the existing body of evidence. A consistent and operational concept of legacy is still needed for future research and practice.

Exploration of the Relationship Between a Group Medical Play Intervention and Children's Preoperative Fear and Anxiety.

INTRODUCTION: Surgical procedures place children of all ages at risk for pediatric medical traumatic stress. Although medical play has proven effective in pediatric care, little is known about the impacts of a group medical play intervention on children's preoperative fear and anxiety. Therefore, the purpose of this pre-post quasi-experimental study was to explore the relationship between a group medical play activity and children's preoperative fear and anxiety. METHOD: Fifty children (aged 5-10 years) scheduled for a medical procedure participated in a group medical play session facilitated by a Certified Child Life Specialist. RESULTS: Statistically significant decreases in anxiety and self-reported fear were observed after the intervention, suggesting that medical play may generate additional coping benefits when offered in group formats. DISCUSSION: Providing children with the opportunity to explore and become familiar with medical equipment through group medical play can help to minimize preoperative anxiety and improve the patient experience for children and their families.

Defining Legacy: The Perceptions of Pediatric Health Care Providers.

Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored pediatric health care providers' perceptions of legacy at an academic medical center to ensure that future legacy interventions are evidence-informed and theoretically grounded. An electronic survey featuring three open-ended questions and two multiple-choice questions with an option for free text response was completed by 172 medical and psychosocial health care providers. Analysis yielded four themes: (1) legacy is intergenerational, enduring, and typically associated with end-of-life; (2) legacies articulate the impacts on others for which one is known and remembered; (3) legacies can be expressed through tangible items or intangible qualities; and (4) legacies are informed and generated by family relationships and work experiences. By understanding legacy as a personally and professionally contextualized experience, health care providers can better assess and meet the legacy needs of hospitalized pediatric patients and families.

Researching the Experiences of Children with Cancer: Considerations for Practice.

Children and adolescents with cancer often participate in medical and psychosocial research throughout their diagnosis and treatment. Furthermore, this involvement frequently extends into the survivorship period. Sometimes referred to as "doubly vulnerable" research participants, children and adolescents with cancer are not only minors, but also minors facing significant medical, developmental, and psychosocial stressors associated with chronic illness. Thus, it is important to exercise care in designing and conducting research with this population; however, these considerations have not been adequately addressed in pediatric healthcare literature. Therefore, the purpose of this review is to describe the research preferences and experiences of children and adolescents with cancer to identify techniques for supporting this population as research participants. By incorporating developmentally appropriate, context-specific, and child-centered adjustments, researchers can help children and adolescents with cancer effectively and meaningfully describe their illness experiences while also developing a positive outlook on future research participation.

Play-based procedural preparation and support intervention for cranial radiation.

PURPOSE: The primary objective of this study was to examine the relationship between play-based procedural preparation and support intervention and use of sedation in children with central nervous system (CNS) tumors during radiation therapy. The secondary objective was to analyze the cost-effectiveness of the intervention compared to costs associated with daily sedation. METHODS: A retrospective chart review was conducted, and 116 children aged 5-12 years met criteria for inclusion. Outcome measures included the total number of radiation treatments received, the number of treatments received with and without sedation, and the type and duration of interventions, which consisted of developmentally appropriate play, education, preparation, and distraction provided by a certified child life specialist. RESULTS: The results of univariate analyses showed that age, tumor location, and total number and duration of interventions were significantly associated with sedation use during radiation therapy. Multivariate analyses showed that, after adjustment for age, tumor location, and craniospinal radiation, a significant relationship was found between the total number and duration of the interventions and sedation use. The implementation of a play-based procedural preparation and support intervention provided by a certified child life specialist significantly reduced health-care costs by decreasing the necessity of daily sedation. CONCLUSIONS: Support interventions provided by child life specialists significantly decreased both sedation use and the cost associated with daily sedation during cranial radiation therapy in children with CNS tumors. This study supports the value of the child life professional as a play-based developmental specialist and a crucial component of cost-effective healthcare.