Aims & Objectives:
Children with medical complexity (CMC) have a threefold risk of unscheduled PICU admission compared to healthy children, and a higher risk of prolonged length of stay and PICU mortality. Their parents develop expertise in providing complex care at home, which presents unique PICU caregiving challenges. This study explored the experiences of parents of CMC during PICU admission.
Design: A qualitative study using interpretive descriptive design, conducted from 2014–2017.
Setting and Participants: Semi-structured interviews took place in the PICU of a Canadian, academic pediatric hospital. Parent caregivers of all CMC admitted for at least 3 days (n=19) were approached over a 1-year period; 17 parents of 14 CMC participated. CMC had underlying medical conditions expected to last longer than 1 year, and daily care needs that were life sustaining or similar to hospital care.
Parents felt their knowledge and expertise were not always recognized by staff, but expected to continue providing expert care. They advocated a different PICU caretaking approach for CMC, emphasizing the importance of parent-professional partnerships. Four themes were identified: (1) “We know our child best”; (2) When expertise collides; (3) Negotiating caretaking boundaries; and (4) Importance of being known.
Parents faced challenges reconciling their needs, expectations, and caregiving knowledge with those of staff. Improving the incorporation of parents’ expertise into PICU care could benefit not only CMC and their parents, but also staff, who may find this population challenging to work with. Findings identify gaps in care and will inform the development of caregiving interventions for this population