Mothers’ experiences of their work as healthcare assistants for their chronic disabled child

Background: To the best of our knowledge, no research of the work situation of full-time, paid, parental HC assistants has been done. Aim: To examine how parents experienced their work as HC assistants for their chronic disabled child. Methods: Semi-structured interviews based on the Work Environment Impact Scale (WEIS-S) were done with nine mothers who had a child aged 8-17 years old with a cognitive or/and physical chronic disability. Content analysis was used with the Model Of Human Occupation as a framework. Results: The studied mothers always needed to be stand-by for their child, and they highlighted physical and psychological health problems caused by their work situation. There were several difficulties working in different environments because of the child’s need of technical devices. Further they described the support from their employers as important and in general the participants perceived a lack of understanding about their work situation in the society. Conclusion: The mothers in the present study had unclear job descriptions, they often worked more than full-time, and had low occupational balance. Significance: Occupational therapists could improve the HC assistants’ work place focusing on the physical and psycho-social work environment as well as on their occupational balance.