title: Experiences of parenting a child with medical complexity in need of acute hospital care.
abstract: Parents of children with medical complexity have described being responsible for providing advanced care for the child. When the child is acutely ill, they must rely on the health-care services during short or long periods of hospitalization. The purpose of this study was to describe parental experiences of caring for their child with medical complexity during hospitalization for acute deterioration, specifically focussing on parental needs and their experiences of the attitudes of staff. Data were gathered through individual interviews and analyzed using qualitative content analysis. The care period can be interpreted as a balancing act between acting as a caregiver and being in need of care. The parents needed skilled staff who could relieve them of medical responsibility, but they wanted to be involved in the care and in the decisions taken. They needed support, including relief, in order to meet their own needs and to be able to take care of their children. It was important that the child was treated with respect in order for the parent to trust the staff. An approach where staff view parents and children as a single unit, as recipients of care, would probably make the situation easier for these parents and children.
authors.affiliation: Department of Paediatric Care, Örebro University Hospital, Örebro, Sweden School of Health and Medical Sciences, Örebro University, Örebro, Sweden monica.hagvall@orebroll.se.
authors.forename: Monica
authors.initials: M
authors.lastname: Hagvall
authors.affiliation: School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
authors.forename: Margareta
authors.initials: M
authors.lastname: Ehnfors
authors.affiliation: School of Health and Medical Sciences, Örebro University, Örebro, Sweden Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
authors.forename: Agneta
authors.initials: A
authors.lastname: Anderzén-Carlsson
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D019988:Children with Disabilities; D005260:Female; D006776:Hospitals, Pediatric; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D016487:Parenting / Q000523:psychology*; D011368:Professional-Family Relations / Q000941:ethics; D036301:Qualitative Research; D013315:Stress, Psychological
keywords: Complex care; disability; qualitative approaches