"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.

COVID-19 stressors and symptoms of anxiety and depression in a community sample of children and adolescents.

BACKGROUND: The COVID-19 public health crisis has created abrupt and unparalleled disruptions to the daily lives of children and adolescents across the world, placing them at significant risk for developing symptoms of anxiety and depression. METHOD: The current study used two data collection periods to determine which types of COVID-19-related stressors were associated with the greatest risk of anxiety and depression symptoms in a community sample of children and adolescents in the United States (U.S.) from May-August 2020 (T1) to February-April 2021 (T2). Seventy-nine youth (ages 10-17; M = 13.41, SD = 2.10; 54.4% female) completed a battery of online standardized questionnaires about COVID-19 stress and psychiatric symptoms at T1 and 56 of these also participated at T2. RESULTS: The majority of children and adolescents reported experiencing the COVID-19-related stressors in multiple domains including daily routines, interpersonal relationships, education, finances, and health. A substantial proportion of the sample reported clinical levels of depression and anxiety symptoms at both T1 and T2. Multiple linear regression analyses revealed that, controlling for T1 anxiety and depression symptoms, T2 interpersonal stressors were significantly associated with elevated depression and anxiety scores at T2. CONCLUSIONS: The findings highlight the salience of social connection for children and adolescents, and may also underscore the risk associated with lockdown restrictions, social distancing, and school closures during the pandemic.

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.

Inhibitory control, working memory and coping with stress: Associations with symptoms of anxiety and depression in adults with Huntington's disease.

OBJECTIVE: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease characterized by neuropsychiatric symptoms (e.g., anxiety and depression), where individuals suffer high levels of stress from the social, physical, and cognitive burden of the disease. The present study examined two factors associated with increased risk for symptoms of anxiety and depression: executive function skills (inhibitory control/attention and working memory) and skills to cope with stress. METHOD: Adults with HD completed the NIH Toolbox measures of inhibitory control/attention and working memory, as well as self-report measures of coping with HD-related stress and symptoms of anxiety and depression. Path analyses were used to test direct and indirect associations among the subtypes of executive functioning, coping, and symptoms. RESULTS: No significant associations were found in the full sample (n = 47), due to a significant portion of the sample with very low executive function abilities. Additional analyses were conducted on a subset of the sample (participants in the top three quartiles on both measures of executive functioning, n = 32). Significant indirect associations emerged among inhibitory control/attention skills, secondary control coping (e.g., acceptance and reappraisal), and symptoms of anxiety and depression in the subsample. Higher inhibitory control/attention skills were associated with greater use of secondary control coping, and greater use of these coping skills was related to lower symptoms of anxiety and depression. No direct or indirect associations were found among working memory skills, coping, and symptoms of anxiety and depression. CONCLUSIONS: Implications for interventions to enhance executive function and coping skills in adults with HD are highlighted. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Neurobiological and Psychosocial Correlates of Communication Between Huntington's Disease Patients and Their Offspring.

OBJECTIVE: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that presents significant challenges to family communication. The investigators examined observations of communication between parents with HD and their offspring talking about the challenges of HD and explored potential correlates of their communication. METHODS: The sample included parents with HD and their adolescent and young-adult offspring (N=64). Parent communication and chorea were independently coded from video recordings. Parents and offspring completed working memory assessments and self-reports of neuropsychiatric symptoms, stress, and coping. RESULTS: Evidence was found for the association of observed parent-offspring communication with disease markers, psychosocial characteristics, and neurocognitive function. For parents, disease markers and working memory were correlates of communication, whereas offspring's psychiatric symptoms, stress, and coping were associated with their communication. CONCLUSIONS: These findings have potential implications for clinical interventions to enhance communication and quality of life for HD families.

Healthcare Delivery and Huntington's Disease During the Time of COVID-19.

BACKGROUND: Safer-at-home orders during the COVID-19 pandemic altered the structure of clinical care for Huntington's disease (HD) patients. This shift provided an opportunity to identify limitations in the current healthcare infrastructure and how these may impact the health and well-being of persons with HD. OBJECTIVE: The study objectives were to assess the feasibility of remote healthcare delivery in HD patients, to identify socioeconomic factors which may explain differences in feasibility and to evaluate the impact of safer-at-home orders on HD patient stress levels. METHODS: This observational study of a clinical HD population during the 'safer-at-home' orders asked patients or caregivers about their current access to healthcare resources and patient stress levels. A chart review allowed for an assessment of socioeconomic status and characterization of HD severity. RESULTS: Two-hundred and twelve HD patients were contacted with 156 completing the survey. During safer-at-home orders, the majority of HD patients were able to obtain medications and see a physician; however, 25% of patients would not commit to regular telehealth visits, and less than 50% utilized an online healthcare platform. We found that 37% of participants were divorced/single, 39% had less than a high school diploma, and nearly 20% were uninsured or on low-income health insurance. Patient stress levels correlated with disease burden. CONCLUSION: A significant portion of HD participants were not willing to participate in telehealth services. Potential explanations for these limitations may include socioeconomic barriers and caregiving structure. These observations illustrate areas for clinical care improvement to address healthcare disparities in the HD community.

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.