Experiences and needs of parents of hospitalised children with disabilities and the health professionals responsible for the child’s health-care – A systematic review

Background: Children with disabilities are more often hospitalized than healthy children and burden their parents additionally. Though the parents usually take care of the disabled child in the hospital, systematic knowledge on the experiences of these care-giving parents in hospital is missing in German-speaking countries.

Objective: What are the experiences and needs described by parents of hospitalized children with disabilities as well as by health professionals responsible for the child’s health-care and what are the implications for parental support?

Methods: A systematic review according to the PRISMA Statement was performed in the databases Pubmed/Medline, PsycINFO, CINAHL and EMBASE in January 2014. Fourteen publications were analysed thematically using content analysis.

Results: The literature identified confirmed the heightened burden of the parents and particularly of the nurses due to emotional and work-related stress. Moreover, the adjustment process, mainly of parents of frequently hospitalized children, was detected. Communication and organisation based on family-centred service can improve the parents’ and the child’s wellbeing.

Conclusions: Considering the burden experienced by parents, their support must be of central concern for all health professionals. Nurses can support parents and thus the hospitalized child in the adjustment process by focused preparation and continuous attendance based on family-centred care. The latter must be supported by the management and the multidisciplinary team to tailor the competences and the organization accordingly.