Perceived impact on health and quality of life among mothers of children with ASD following a personalized health program: a retrospective observational study

ABSTRACT Introduction: Mothers of children with autism spectrum disorder (ASD) experience sustained functional impairment across multiple life domains, including sleep, autonomy, health, and social participation. Despite growing evidence on caregiver burden in ASD, the impact of child-directed interventions on maternal quality of life has not been systematically documented. This study explores perceived functional changes in primary caregiving mothers following their children's participation in a prolonged personalized naturopathic health program. Methods: Retrospective observational study with 62 mothers or primary caregivers of children and young people with ASD from 15 countries, with a minimum documented program adherence of 12 months (mean: 24.7 months; range: 12-48). A 107-item self-reported questionnaire organized into four functional domains was administered: basic survival and regulation, functional autonomy, perceived maternal health, and re-emergence of the person. Items were rated on a 0-5 scale. Percentages of low functioning (0-2) and high functioning (4-5) were calculated before and after program participation. Analysis was descriptive without causal inference. Results: Pronounced reductions in low functioning percentages were observed across all four domains, accompanied by substantial increases in high functioning. Sleep-related low functioning decreased from 73.2% to 7.8%; constant vigilance from 87.6% to 16.4%; physical exhaustion from 86.0% to 12.4%; and personal interests and life project from 89.7% to 18.8%, with high functioning increasing from 3.4% to 59.7%. The improvement pattern was consistent and transversal across all domains. Conclusions: Results are consistent with the hypothesis that the child's functional improvement acts as an enabling condition for the restoration of maternal life. Maternal quality of life constitutes a legitimate and measurable outcome of child-directed interventions in ASD. These findings have clinical, social, and preventive implications and open a research line that warrants development with prospective designs and greater methodological control.

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Publication Details

Journal
Zenodo (CERN European Organization for Nuclear Research)
Published
2026-05-14
DOI
https://doi.org/10.5281/zenodo.20184275
Primary Topic
Family and Disability Support Research
Type
preprint
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preprint

Perceived impact on health and quality of life among mothers of children with ASD following a personalized health program: a retrospective observational study

Katia Dolle, María Jesús Peña Martín
Zenodo (CERN European Organization for Nuclear Research)
Family and Disability Support Research
preprint

Perceived impact on health and quality of life among mothers of children with ASD following a personalized health program: a retrospective observational study

Katia Dolle, María Jesús Peña Martín
preprint en

Abstract

ABSTRACT Introduction: Mothers of children with autism spectrum disorder (ASD) experience sustained functional impairment across multiple life domains, including sleep, autonomy, health, and social participation. Despite growing evidence on caregiver burden in ASD, the impact of child-directed interventions on maternal quality of life has not been systematically documented. This study explores perceived functional changes in primary caregiving mothers following their children's participation in a prolonged personalized naturopathic health program. Methods: Retrospective observational study with 62 mothers or primary caregivers of children and young people with ASD from 15 countries, with a minimum documented program adherence of 12 months (mean: 24.7 months; range: 12-48). A 107-item self-reported questionnaire organized into four functional domains was administered: basic survival and regulation, functional autonomy, perceived maternal health, and re-emergence of the person. Items were rated on a 0-5 scale. Percentages of low functioning (0-2) and high functioning (4-5) were calculated before and after program participation. Analysis was descriptive without causal inference. Results: Pronounced reductions in low functioning percentages were observed across all four domains, accompanied by substantial increases in high functioning. Sleep-related low functioning decreased from 73.2% to 7.8%; constant vigilance from 87.6% to 16.4%; physical exhaustion from 86.0% to 12.4%; and personal interests and life project from 89.7% to 18.8%, with high functioning increasing from 3.4% to 59.7%. The improvement pattern was consistent and transversal across all domains. Conclusions: Results are consistent with the hypothesis that the child's functional improvement acts as an enabling condition for the restoration of maternal life. Maternal quality of life constitutes a legitimate and measurable outcome of child-directed interventions in ASD. These findings have clinical, social, and preventive implications and open a research line that warrants development with prospective designs and greater methodological control.

Zenodo (CERN European Organization for Nuclear Research)
Korea Association of Teachers of English (KR)
Family and Disability Support Research
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