The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility

• Published in: Health expectations : an international journal of public participation in health care and health policy 2020-10, Vol.23 (5), p.1144-1154
• Main Authors: Page, Bethan F., Hinton, Lisa, Harrop, Emily, Vincent, Charles
• Format: Article
• Language: English
• Subjects: Abdomen; Abdominal surgery; Activities of daily living; Analysis; Caregivers; Caregiving; Child; Children; Children & youth; Children's furniture; chronic disease; Emergency medical services; Emergency preparedness; Emergency procedures; Emergency response; Enteral feeding; Enteral nutrition; Families & family life; Family; First year; Health care; Health needs; Health planning; Health services; Hearing loss; Home health care; home nursing; Hospitals; Humans; Interviews; Intestine; medical complexity; Nutrition; Original Research Paper; Original Research Papers; Ostomy; paediatrics; Parenteral nutrition; Parents; Parents & parenting; Patient Care; Pediatrics; Qualitative Research; Siblings; Sleep; Sleep deprivation; Surgery; Tracheostomy; Tracheotomy
• ISSN: 1369-6513; 1369-7625; 1369-7625
• DOI: 10.1111/hex.13092

Background Increasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. Methods We conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. Results We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life‐threatening), co‐ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep‐deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. Discussion The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health‐care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.