{"id":"W2898726842","doi":"10.1111/cch.12628","title":"“It is like a jungle gym, and everything is under construction”: The parent's perspective of caring for a child with a rare disease","year":2018,"lang":"en","type":"article","venue":"Child Care Health and Development","topic":"Genomics and Rare Diseases","field":"Biochemistry, Genetics and Molecular Biology","cited_by":117,"is_retracted":false,"has_abstract":true,"ca_institutions":"Mount Royal University","funders":"","keywords":"Thematic analysis; Perspective (graphical); Disease; Rare disease; Health care; Jungle; Face (sociological concept); Medicine; Nursing; Psychology; Developmental psychology; Qualitative research; Family medicine; Sociology; Pathology; Political science","routes":{"ca_aff":true,"ca_fund":false,"ca_venue":false,"about_ca":false,"invisible_to_affiliation_only":false},"retraction":null,"screen":null,"direct_labels":[],"prediction":{"model_version":"codex-gemma-dda1882f352a","candidate_categories":[],"consensus_categories":[],"category_scores_codex":[0.00004585438,0.0001279492,0.0001256884,0.000026565,0.000533317,0.00002548274,0.00005763297,0.00003782202,0.000003788514],"category_scores_gemma":[0.00001075359,0.00008966027,0.00003093401,0.00004048079,0.0001458881,0.000003755405,0.00007741219,0.00004490411,2.33804e-7],"about_ca_system_candidate":false,"about_ca_system_consensus":false,"about_ca_system_score_codex":0.00003575583,"about_ca_system_score_gemma":0.0006185636,"about_ca_topic_candidate":false,"about_ca_topic_consensus":false,"about_ca_topic_score_codex":0.00003842996,"about_ca_topic_score_gemma":0.0001575754,"domain_scores_codex":[0.9992534,0.00001412822,0.0001469258,0.0003120415,0.00008305586,0.0001904494],"domain_scores_gemma":[0.999356,0.000006616468,0.00008213459,0.0001505405,0.0001889704,0.0002157234],"domain_codex":null,"domain_gemma":null,"domain_candidate":null,"domain_consensus":null,"study_design_codex":"qualitative","study_design_gemma":"not_applicable","study_design_scores_codex":[0.005587258,0.0007043419,0.2495244,0.005957318,0.003004588,0.00002398508,0.5545599,0.00004740737,0.0002920417,0.004252955,0.03254008,0.1435056],"study_design_scores_gemma":[0.008595196,0.002660562,0.2366133,0.001535317,0.0002445886,0.0004089939,0.3553201,0.00008796938,0.00683515,0.0005170458,0.3854656,0.001716162],"study_design_candidate":"qualitative","study_design_consensus":null,"genre_codex":"empirical","genre_gemma":"empirical","genre_scores_codex":[0.9648893,0.02602275,0.00105503,0.006334458,0.0001462478,0.0008288776,0.0001994658,0.000009524475,0.0005143287],"genre_scores_gemma":[0.989991,0.0005440652,0.001234482,0.007999259,0.00009066971,0.00002929673,0.00007310264,0.00001313263,0.00002496999],"genre_candidate":"empirical","genre_consensus":"empirical","teacher_disagreement_score":0.3529255,"threshold_uncertainty_score":0.4101898,"prediction_status":"machine_predicted_unvalidated"},"machine_scores":{"provisional":true,"baseline":true,"maturity_gate_passed":false,"score_opus":0.00904843713587607,"score_gpt":0.2519013789777642,"score_spread":0.2428529418418881,"validation_status":"score_only:v0-immature-baseline","note":"Baseline scores from an immature model (maturity gate not passed). Scores rank; they never assert a category."}}