Development and description of a naturopathic instrument for the assessment of health status indicators in caregiving mothers of children with ASD: rationale, structure and baseline health status indicators

ABSTRACT

Introduction:

Mothers of children with autism spectrum disorder (ASD) experience sustained functional impairment across all areas of daily life. Available instruments for assessing this impact, designed within the clinical-psychological framework, capture internal states such as stress or anxiety but not the mother's functional capacity to sustain her own life. Naturopathy, through its conceptual framework of Health Status Indicators (HSI), offers an alternative perspective centered on real-life vital functioning.

Objective:

To describe the development process, structure, and content of a naturopathic instrument for the assessment of HSI in caregiving mothers of children with ASD, and to present the baseline health status indicator profile generated by the instrument in a sample of 62 participants.

Methods:

The instrument was developed using the clinical expert method, based on the systematic observation of more than 1,000 clinical narratives over 15 years of naturopathic practice. The resulting questionnaire comprises 107 items organized into four thematic blocks with thirteen subsections, rated on a 0-5 scale. It was administered retrospectively to 62 caregiving mothers of children with ASD from 15 countries, with a minimum of 12 months of participation in a personalized naturopathic program.

Results:

Baseline health status indicators revealed a transversal and severe pattern of impairment across all evaluated blocks. Low functioning rates (scores 0-2) before the program exceeded 80% in the personal block (mean: 81.0%), 72% in the social life and community block (72.5%), and 77% in the family and school block (77.0%). High functioning rates (scores 4-5) did not exceed 15% in any subsection at baseline, with values as low as 2.5% in fears and anxieties and 4.6% in emotions and personal growth. After program participation, substantial reductions in low functioning and increases in high functioning were observed across all blocks.

Conclusions:

The developed instrument captures dimensions of caregiving impact in mothers of children with ASD that standard clinical-psychological instruments do not measure, by focusing on real-life situations rather than internal states. The baseline data constitute in themselves a scientific contribution: the first systematic functional portrait of what these mothers experience before any intervention, built from direct clinical observation of more than one thousand narratives. The instrument demonstrates sensitivity to detect functional changes in daily life and represents a contribution to the corpus of assessment tools in naturopathy.