Abstract
ABSTRACT
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
P
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.