Pediatric investigation · 2025
A comprehensive parent training program for parents of neurodivergent children with pathological demand avoidance: The Paradigm Shift Program® Pilot Study.
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Carlozzi Noelle E, Lombard Wendy L, Troost Jonathan P, Graves Christopher M, Miner Jennifer A, Fauser Anthony T, Ehrlich Casey
Аннотация
IMPORTANCE: Although pathological demand avoidance (PDA; also known as "extreme" or "persistent" demand avoidance and persistent drive for autonomy) was first described in 1980 as a distinct behavioral profile among a subgroup of children with autism spectrum disorder, there is limited scientific evidence to support children with PDA or their parents/guardians.
OBJECTIVE: To establish the feasibility and acceptability of the Paradigm Shift Program®, a 12-week educational and training program for parents and guardians of children with PDA.
METHODS: Seventy-six parents/guardians of children with PDA were enrolled in the study. Prior to the start of the program, the parents/guardians completed a baseline assessment (demographic questions, program expectations, and several patient-reported outcomes [PROs] and proxy measures). At the end of the program, parents/guardians repeated the PROs and proxy measures, and completed a feasibility and acceptability questionnaire and anchor items.
RESULTS: A total of 71 parents/guardians completed the pre-program assessment, and 60 (85%) completed the end-of-program assessment. Among those with both assessments, program acceptability was high, and parents/guardians were generally satisfied with the different program elements (level of agreement >70% for agreed or strongly agreed). Parents/guardians reported significant improvement in health-related quality of life (HRQOL) in 10 of the 13 PROs (all P < 0.05). Parent/guardian proxy reports also indicated significant improvements in demand characteristics (P < 0.05), as well as a trend for significant improvement in conduct problems (P = 0.08), total difficulties (P = 0.05), and externalizing behavior (P = 0.05), in their child with PDA.
INTERPRETATION: The paradigm shift program was both feasible and acceptable. Furthermore, there was evidence that this program improved the HRQOL of parents/guardians as well as the behavior of children with PDA.
OBJECTIVE: To establish the feasibility and acceptability of the Paradigm Shift Program®, a 12-week educational and training program for parents and guardians of children with PDA.
METHODS: Seventy-six parents/guardians of children with PDA were enrolled in the study. Prior to the start of the program, the parents/guardians completed a baseline assessment (demographic questions, program expectations, and several patient-reported outcomes [PROs] and proxy measures). At the end of the program, parents/guardians repeated the PROs and proxy measures, and completed a feasibility and acceptability questionnaire and anchor items.
RESULTS: A total of 71 parents/guardians completed the pre-program assessment, and 60 (85%) completed the end-of-program assessment. Among those with both assessments, program acceptability was high, and parents/guardians were generally satisfied with the different program elements (level of agreement >70% for agreed or strongly agreed). Parents/guardians reported significant improvement in health-related quality of life (HRQOL) in 10 of the 13 PROs (all P < 0.05). Parent/guardian proxy reports also indicated significant improvements in demand characteristics (P < 0.05), as well as a trend for significant improvement in conduct problems (P = 0.08), total difficulties (P = 0.05), and externalizing behavior (P = 0.05), in their child with PDA.
INTERPRETATION: The paradigm shift program was both feasible and acceptable. Furthermore, there was evidence that this program improved the HRQOL of parents/guardians as well as the behavior of children with PDA.