Persons on prolonged mechanical ventilation (PMV) often suffer from long-term physical and psychological sequelae following ICU discharge. Involvement of family caregivers is key to positive outcomes after discharge. Despite reports of distress in caregivers of persons on PMV, there is limited understanding of the extent of this stress experience over the continuum of patient illness. This preliminary report of a longitudinal qualitative study aims to explore experiences among family caregivers of patients on PMV (≥ 4 days) from ICU to 2 months following ICU discharge.
Content analysis was performed on data from face-to-face semi-structured interviews in six caregivers of persons on PMV at baseline (in the ICU) and 2 months post-ICU discharge. All interviews were digitally recorded, transcribed verbatim and analyzed for emerging themes.
Caregivers were spouses (n = 3), parents (n = 2) or adult children (n = 1) of patients. Four patients required tracheostomy while weaning from PMV. At 2 months, all patients were weaned from PMV and w ere home except one in a skilled nursing facility. Emergent themes that underscored the nature of caregiving include: 1) difficulty not being able to do anything but watch the patient; 2) role reversal; 3) not having enough time for self; 4) positive aspects of caregiving. A majority of caregivers said their daily life became busier at 2 month post-ICU discharge. All caregivers emphasized keeping faith, being patient (e.g. “take a day at a time.”), and asking questions to health care professionals as important factors while undergoing long-term caregiving.
Caregivers of persons on PMV experienced a great deal of emotional stress in the ICU. Their role and lifestyle changed after patients’ discharge from the ICU. Staying positive and being informed were recommended as important factors for caregivers.
Exploring experiences in caregivers of persons on PMV will help clinicians to better understand the patterns of caregiver stress responses and will provide a basis for developing a timely intervention for this caregiver population.
JiYeon Choi, No Financial Disclosure Information; No Product/Research Disclosure Information