Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool.

Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness.

Checking IN: Development, Acceptability, and Feasibility of a Pediatric Electronic Distress Screener.

Objective: Chronic illness in children and adolescents is associated with significant stress and risk of psychosocial problems. In busy pediatric clinics, limited time and resources are significant barriers to providing mental health assessment for every child. A brief, real-time self-report measure of psychosocial problems is needed. Methods: An electronic distress screening tool, Checking IN, for ages 8-21 was developed in 3 phases. Phase I used semi-structured cognitive interviews (N = 47) to test the wording of items assessing emotional, physical, social, practical, and spiritual concerns of pediatric patients. Findings informed the development of the final measure and an electronic platform (Phase II). Phase III used semi-structured interviews (N = 134) to assess child, caregiver and researcher perception of the feasibility, acceptability, and barriers of administering Checking IN in the outpatient setting at 4 sites. Results: Most patients and caregivers rated Checking IN as "easy" or "very easy" to complete, "feasible" or "somewhat feasible," and the time to complete the measure as acceptable. Most providers (n = 68) reported Checking IN elicited clinically useful and novel information. Fifty-four percent changed care for their patient based on the results. Conclusions: Checking IN is a versatile and brief distress screener that is acceptable to youth with chronic illness and feasible to administer. The summary report provides immediate clinically meaningful data. Electronic tools like Checking IN can capture a child's current psychosocial wellbeing in a standardized, consistent, and useful way, while allowing for the automation of triaging referrals and psychosocial documentation during outpatient visits.

Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives.

Background and Aims: End-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)-a research-informed advance care planning (ACP) guide-increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared. Methods: Family, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis. Results: One-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC. Conclusions: VMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.