Feasibility of a child life specialist program for oncology patients with minor children at home: Qualitative analysis.
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30 Background: Up to 24% of adult oncology patients have minor children at home, who may experience negative short- and long-term health outcomes as a result. Typical support networks often fail to meet the needs of these families. To address this, an innovative Child Life Specialist (CLS) program was embedded within the psychosocial support team at a tertiary oncology center. The program provided direct consultation to families (adults and children) including guidance on talking with children, provision of resources, diagnostic teaching, end-of-life support, grief support, and emotional expression. Methods: To understand the feasibility of this program (including acceptability, demand, implementation, practicality, adaptation, integration, expansion, and preliminary measures of impact), we collected 360-degree feedback from impacted stakeholders. At least two months following an encounter with the CLS, families were offered participation in a semi-structured interview (via purposive selection to capture multiple perspectives, including patients, non-patient parents/family members, and children aged 10-17). At the end of the pilot, two focus groups were held consisting of clinicians who engaged with the program. A thematic analysis was completed from the interview/focus group discussion transcripts. Results: 15 interviews were completed with adults (ten with patients, five with non-patient parents/other family members). Emergent themes were: Establishing comfort, Allaying parent apprehension, Coaching and reassurance, Value added, Integration, Impact of Covid-19, and Areas for development. In three interviews with children, the emergent themes were: Building rapport, Developmentally appropriate approaches, Understanding and managing emotions, Improving communication, and Areas for development. The first focus group included the CLS and two clinical leads of the psychosocial support team. Emergent themes from this discussion were: Promotion of the program, Accessibility, Role of social work, Impact of Covid-19, and Adopting a virtual approach. The second focus group consisted of three inpatient social workers, and the emergent themes were: Expertise, Accessibility, Allaying parent apprehension, Value added, Impact of Covid-19, and Areas for development. Synthesis of data identified five overall key themes: Awareness, Integration, Value added, Family-centered care, and Impact of Covid-19. Conclusions: This study conducted qualitative analysis of 360-degree feedback on the CLS pilot program. The analysis demonstrated that program was felt to add value, integrate well with current systems, and represent high-quality, family-centered care. This pilot occurred during the Covid-19 pandemic, the impacts of which were represented in this study.
