Psychosocial factors affecting the quality of life of parents who have children with home mechanical ventilation

Abstract

AbstractIntroductionMost children with medical complexity have to live with home mechanical ventilation (HMV). Undertaking the care of a child with HMV creates a psychosocial burden on parents. This study investigated the impact of selected potential determinants on the quality of life of parents who have children with HMV.MethodsA cross‐sectional survey study was conducted using a structured questionnaire to determine the sociodemographic characteristics of the parents. The World Health Organization Quality of Life Assessment‐Brief version, the Beck Depression Inventory (BDI), and the Multidimensional Scale of Perceived Social Support were applied.ResultsA total of 35 participants responded to the questionnaires. Paired data from mothers and fathers were obtained from 12 families. A moderately significant positive correlation was found between the perceived social support levels of the parents and all domains of the quality of life scale (for the physical domain: r = .455, p = .006; for the psychological domain: r = .549, p = .001; for the social domain: r = .726, p = .000; and for the environment domain: r = .442, p = .008). A moderate negative relationship was found between parents’ perceived social support levels and BDI scores (r = −.557, p = .001). The multivariate regression analysis determined that being a mother, quitting a job to become a caregiver, being the only caregiver at home, and having a neurological/neuromuscular disease as the primary disease of the child were associated with lower scores in more than one quality of life domain.ConclusionOur results emphasize that appropriate social support is important for improving the quality of life scores of parents of children with HMV.