Teen Perspectives in Burn Recovery: Coproduction for a New Outcome Tool Measuring Interpersonal Relationships and Social Interactions

Model System:

Reference Type:

Accession No.:

Journal:

Year, Volume, Issue, Page(s):

Publication Website:

Abstract:

Adolescence is a period of major developmental and social change, and when coupled with the challenges of burn injuries, it can significantly affect social interactions and relationships. To develop a burn-specific outcome measure for teens, the Teen-Aged Life Impact Burn Recovery Evaluation (TA-LIBRE12-19) was created. This study details the qualitative analysis of transcripts from teen burn survivors used to co-produce an item pool related to Interpersonal Interactions and Relationships (IIR). Stakeholder focus groups involving teens were conducted to identify key outcomes relevant for assessing burn recovery. Participants shared their perspectives on how burns impact their lives, with discussions continuing until thematic saturation was reached. Identified themes were assigned to pre-established domains, and new items were generated from recurring concepts not captured in existing instruments. Two focus groups were conducted with 7 teen burn survivors. The median age was 13.8 years (IQR 12.1-16.3), and 71% were female. Half of the burns were fire/flame-related, with a median time since injury of 5.5 years (IQR 0.5-12.1) and a median burn size of 20% TBSA (IQR 0.3-60). Novel concepts from teen burn survivors produced 28 new items. The final IIR subdomain is comprised of 51 items, 45.1% (n = 23) from legacy instruments and 54.9% (n = 28) newly developed from teen input. Including burn survivors’ voices in developing the TA-LIBRE12–19 highlights the importance of co-production. Over half of the items originated from qualitative input, ensuring the instrument reflects relevant, patient-centered outcomes for teen burn recovery.

Author(s):

Participating Centers: