Perceptions of the Caregiving Role among Mothers of Children with Severe Motor and Intellectual Disabilities and its Impact on the Mothers' Well-being

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This research sought to examine the structure of "perceptions of the caregiving role" among mothers caring for children with severe motor and intellectual disabilities and clarify the impact of these "perceptions of the caregiving role" on the well-being of the mother. Subjects were 154 mothers receiving a questionnaire for mothers of children with severe motor and intellectual disabilities residing in the suburbs of Tokyo. Results of analysis indicated the following. Five factors were identified with regard to the structure of "perceptions of the caregiving role": "being solely responsible for the role," "primacy of the caregiving role," "maximization of role involvement," "recognition of personal gain," and "role captivity." Of these, those factors having a significant impact on the well-being of the mother were "being solely responsible for the role," "recognition of personal gain," and "role captivity." Among these impacting factors, "role captivity," i.e. being constrained by perceptions as part of norms regarding fulfillment of the caregiving role, had the greatest impact on well-being and resulted in indirectly diminishing well-being through the reduction of social support overall and amplification of secondary stressors.