{"doi":"10.1111/cea.14463","title":"Patient‐reported outcomes in food allergy: Speaking the same language to address some of the <scp>GAPS</scp>","abstract":"The shift to patient-oriented research, which reflects the voices of patients and caregivers who are experts by experience (EBE),1 has resulted in meaningful research and outcomes. Concurrent shifts towards research that addresses equity, diversity and inclusion have similarly prompted awareness that much research has included patients who represent narrow demographics, specifically affluent White families in high-income countries.2 These shifts are essential and exciting though not without methodological challenges, ranging from ways to respectfully engage underrepresented groups, to interpreting findings through culturally respectful lenses. Food allergy (FA) has substantial psychosocial impacts.3-5 However, less is known about how or if these findings reflect culturally, socioeconomically and geographically diverse populations. Such relevance requires detailed and contextualized understanding, which can be gleaned through qualitative designs. The Global Access to Psychological Services for FA (GAPS; Aston University Research Ethics Committee REC ID number 1621) study aims to explore the need and uptake of psychological services in multiple countries and languages (Figure 1, Panel A). In the present paper, we aimed to provide guidance, informed by our own experiences conducting a multilingual, international qualitative study, for groups wishing to perform similar work (Figure 1, Panel B). To recruit diverse populations within a country, we recruited via multiple methods, including social media and via patient organizations, and selected participants based on gender, age, ethnicity, number and type of allergen(s) and age at diagnosis. All participants provided written informed consent. Semi-structured interview guides were developed through literature review and engagement with content and methodological experts and EBE. For practical reasons, the original development occurred in a single language (English). Translation of the instrument occurred per World Health Organization guidelines and included both forward and backward translation.6 Forward translation involved instrument translation from the original language to the target language(s), a process that required the translator to have language skills at maternal language proficiency, and familiarity with health concepts and terms. Thereafter, interview guides were independently back-translated, during which time the translators did not have access to the document in the original language. Although presented linearly, this process involved several rounds, until the translation was deemed satisfactory and any differences, including unclear/complicated terms, were resolved. Thereafter, the document was considered to be a final translation.6 As those managing FA carry a heavy psychological burden,3-5 more complete insight is gained when participants are able to express themselves in their mother tongue, and wherever possible, with an interviewer who understands age-informed language use, cultural context and vernacular. A lack of such understanding may contribute to erroneous use of a word or misinterpretation of a comment. To this end, interviewers were encouraged to request clarification of a term, despite the interruption. Some researchers collect multilingual qualitative data and complete the translation prior to analysis as it may contribute to the clearer establishment of linkages of transcripts.7 Translation prior to analysis, however, increases the potential for bias where an analyst may not speak the language used to collect data or have the cultural frame of reference to comprehensively interpret the data. Linguistic misinterpretations or incomplete analyses may occur and parts of the original data set may be lost in translation.”8, p. 4 Multiple analysts can provide an opportunity for intercoder reliability—a necessary step in multilingual analysis given the risk of misinterpretation in the absence of a holistic knowledge of the culture and language, including regi","journal":"Clinical & Experimental Allergy","year":2024,"id":483052,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":1,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9574,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2024-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":237673,"name":"Helen A. Brough","orcid":"0000-0001-7203-0813","position":1,"is_corresponding":false},{"id":1014676,"name":"Christina Jones","orcid":"0000-0003-3672-6631","position":2,"is_corresponding":false},{"id":1014679,"name":"Mary Jane Marchisotto","orcid":"0000-0002-9196-8329","position":3,"is_corresponding":false},{"id":241614,"name":"Linda Herbert","orcid":"0000-0002-8947-6931","position":4,"is_corresponding":false},{"id":1324004,"name":"Caity Roleston","orcid":"0000-0003-2770-887X","position":5,"is_corresponding":false},{"id":1324005,"name":"Rebecca Knibb","orcid":"0000-0001-5561-0904","position":6,"is_corresponding":false},{"id":704843,"name":"Jennifer L. P. Protudjer","orcid":"0000-0002-3888-8688","position":0,"is_corresponding":true}],"reference_count":9,"raw_metadata":null,"created_at":"2026-07-19T02:07:22.248464Z","pmid":"38351856","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}