Long-Term Follow-Up of Legacy Services Offered by Children's Hospitals in the United States.

Background: Our 2012 survey of providers described legacy services offered at children's hospitals nationwide. Since then, the science related to legacy interventions has advanced, resulting in increased recognition of the importance of legacy services. Yet, legacy interventions offered by children's hospitals have not been recently described. Objective: To describe current legacy services offered by children's hospitals in the United States and compare with our previous results. Design: Descriptive cross-sectional design. Setting/Subjects: Participants included providers (N = 54) from teaching children's hospitals in the United States. Measurements: Electronic REDCap survey. Results: Similar to our prior research, 100% of respondents reported that their hospital offers legacy activities with 98% providing such services as a standard of care. Notable increased numbers of children are participating in legacy interventions compared with the previous study, now with 40% (compared with 9.5% previously) of participants reporting >50 children per year. Patients being offered legacy activities include neonatal intensive care unit (NICU) patients, those with life-threatening traumatic injuries, those on life support for extended periods of time, and those referred to hospice. Although not statistically significant, the percentage of hospitals offering legacy-making to children with cancer, neurodegenerative diseases, and life-threatening illnesses is slightly increased from the prior time point. Conclusions: Children across developmental stages and illness contexts and their families can benefit from both the memories generated through the process of legacy services and the subsequent tangible products. Providers should continue to offer legacy opportunities to seriously ill children and their families across a wide array of settings and illness contexts.

Multifaceted Support Interventions for Siblings of Children With Cancer: A Systematic Review.

BACKGROUND: When a child is given a diagnosis of cancer, the impact reverberates through the family unit. Siblings, in particular, experience an accumulation of distress. Siblings of children with cancer can experience both short- and long-term difficulties in psychosocial and physical functioning, and professional bodies have called for interventions targeted at their needs. OBJECTIVE: The aim of this study was to describe outcomes, core components, and general characteristics of effective interventions intended to support sibling well-being and psychosocial health in pediatric oncology. METHODS: MEDLINE (Ovid), EMBASE, CINAHL, PsycINFO, and Cochrane CENTRAL databases were searched in September 2019 and July 2020. Studies were included if they focused on interventions for siblings or family in pediatric cancer, had quantitative data to describe the effect or impact of the intervention, and were published in English. Included studies underwent quality appraisal, data extraction, and data synthesis. RESULTS: Twenty articles fit inclusion criteria. Most interventions focused on 6- to 18-year-old siblings within a group setting. Most were theory based. Group format with multiple sessions was the most common approach. The most frequently assessed outcomes were depression, anxiety, posttraumatic stress symptoms, and health-related quality of life. CONCLUSIONS: Understanding outcomes, core components, and characteristics of effective interventions is important to translate sibling-support interventions into standard practice. Such considerations are important in delivering equitable family-centered care to siblings of children with cancer. IMPLICATIONS FOR PRACTICE: As institutions create mechanisms to support siblings, it may be important to target high-risk siblings initially, partner with community resources, attend to underrecognized populations of siblings, and more fully incorporate family into sibling support.

Primary Contact Occupational Therapy Hand Clinics: The pull of an occupational perspective.

BACKGROUND/AIM: Primary contact models of care are an emerging area of occupational therapy practice that aim to respond to the changing health-care landscape. There is a dearth of literature exploring an occupational perspective in primary contact roles, and literature in the broader scope of hand therapy has recognised that occupational therapists' practice often aligns with the biomedical worldview. Therefore, this study aimed to explore the practice of occupational therapists within Primary Contact Occupational Therapy Hand (PCOTH) Clinics from an occupational perspective. METHOD: This ethnographic study gathered in-depth data through observations of primary contact hand therapy sessions, review of progress notes and interviews with occupational therapists. Qualitative data analysis was conducted using a three-stage process first at the item level, then pattern level and finally at the structural level. The research team collaboratively discussed all codes and then themes. RESULTS: The push of the biomedical culture and the pull of an occupational perspective was conceptualised as an overarching theme shaping occupational therapists' practice in the primary contact clinics. Five themes emerged: bottom-up approach to an occupational perspective, an occupational perspective via informal discussion, occupational therapists' expectations of patients, occupational perspective on autopilot and blurred professional identity. CONCLUSION: Occupational therapists working in primary contact roles were pushed by the biomedical culture of the setting. Despite this, there was still a pull towards an occupational perspective. This research provides an initial exploration of primary contact clinics, and highlighted the added bonus of an occupational perspective. The findings present a timely opportunity for occupational therapists to critically reflect on practice in PCOTH clinics.