Chronic illness and critical care-A qualitative exploration of family experience and need

Background: People with chronic illnesses such as cancer and cardiovascular disease are living longer and often require the support of critical care services. Current health care provision means patients may be discharged home once clinically stable despite still having high care demands including social, emotional, or physical needs. Families are often required to assume caregiving roles. Research into family burden using quantitative methods has increased awareness, however, little qualitative work exists and the development of support interventions for families is required.

Aims: To explore the experience and needs of family members of people with an existing chronic illness who are admitted to the Critical Care Unit (CCU), and to identify the desired components of a family support intervention in the form of a resource toolkit.

Study design: A qualitative exploration of family experience and need, and content development for a resource toolkit using focus group methodology. Two focus groups and one face-to-face interview were conducted involving nine adult (≥18 years) family members of adult patients with chronic illness admitted to critical care in the preceding 9 months across two specialist hospitals in the UK. These were digitally recorded, transcribed, and thematically analysed.

Findings: Four themes were identified: importance of communication, need for support, trauma of chronic illness, and having to provide "Do-it-Yourself" care. The immense responsibility of families to provide care throughout the illness trajectory is highlighted. Understandable information is essential for a family support toolkit.