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.

"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.

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.

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.