When children with profound multiple disabilities are hospitalized: A cross‐sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family‐centered care

Abstract

Health professionals need to be aware of parental burden and that the perception of the children's well-being and the parents' efforts determine their support needs. Easing parents' burden and fostering confidence in the hospitalized children's well-being requires coordination of care provided by advanced nurse specialists, with an institutional framework that clarifies parental collaboration.

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

“…Parental burden includes objective practical problems, for example time to treat the child, hospital visits, extra supervision and care, less time for work and leisure and financial impact. Parental burden also includes subjective psychological suffering, for example disturbed family relationships, depression, anxiety, loss of dreams and expectations (Edmond, Graves, Whiting, & Karlson, ; Seliner, Latal, & Spirig, ).…”

Effectiveness of a nurse‐led preadmission intervention for parents of children with profound multiple disabilities undergoing hip‐joint surgery: A quasi‐experimental pilot study

“…The parents from both groups were approached by a study nurse if their child (1–18 years old) met the recruitment criteria (Seliner et al., , pp. 148–149): (i) hospitalization in one of the defined pediatric units due to hip‐joint surgery, (ii) a neurologic diagnosis, for example, cerebral palsy, diagnosed with a neurologic disorder at least 6 months prior to her/his hospitalization, and (iii) involving profound disabilities, defined by a level of independence less than or equal to 50% of age‐appropriate development assessed by the Children's Functional Independence Measure (WeeFIM II®).…”

“…Orthopedic surgery for children with disabilities poses a major challenge to parents’ ability to support, protect, and care for their children themselves during hospitalization (Iversen, Graue, & Raheim, ; Seliner, Latal, & Spirig, ). This challenge for parents intensifies when the child's disabilities are severe (Ausserhofer, Mantovan, Pirhofer, Huber, & Them, ).…”

“…Family‐centered care (FCC) is essential for these families during hospitalization, as the concept has been shown to positively affect the child and the family through support of the family system (Jansen, van der Putten, Post, & Vlaskamp, ). The FCC that is provided to the child and the family is characterized by a supportive and respectful attitude and the exchange of information (Jansen et al., ; Seliner et al., , p. 148). Nurses are ideally situated to offer FCC and to support parents for the child's hospital stay (Bell, ; Olli, Vehkakoski, & Salantera, ).…”

“…Children with profound intellectual and/or severe motor disabilities combined with other impairments (profound intellectual and multiple disabilities [PIMDs]), for example, poor speech, belong to a particularly vulnerable subgroup of children with chronic medically complex conditions (Nakken & Vlaskamp, ). Such children require ongoing support in activities of daily living as well as in medical care, such as tube feeding (Russell & Simon, ; Seliner et al., ). Children with these conditions are prone to musculoskeletal malformation, particularly when neurologic impairments are involved.…”