RESUMO
INTRODUCTION: Lung transplantation is a treatment crucial for the survival of patients with end-stage lung diseases. An identified caregiver is obligatory for a patient to be eligible for a lung transplant and plays an essential role in the transplant recipient's care. Most caregiver research, however, has been on caregivers of persons with Alzheimer's disease or the elderly, with limited research on caregivers' experiences caring for transplant recipients. This study examined the experiences of caregivers of recipient's pre- and post-lung transplantation. METHODS/APPROACH: Caregivers of lung transplant recipients were recruited using purposeful sampling. Audiotaped semi-structured open ended interviews were conducted until data saturation. Each interview was transcribed verbatim, and conventional content analysis performed to extract significant themes and subthemes. FINDINGS: Four main themes and 12 sub-themes were identified. The former included (1) establishing the diagnosis, (2) caregiver roles, (3) caregiver psychological and psychosocial issues, and (4) support. Caregivers lacked basic knowledge related to lung transplantation. The caregivers' roles necessitated rearranging priorities, lifestyle changes, and redirecting emotional and physical energy. Support played an important role in caregiving experiences. DISCUSSION: Each caregiver shared their unique caregiving experiences. Caregivers lack knowledge about transplantation, experience dramatic changes in their family life, social activities, employment, and often financial status. Healthcare providers can use the findings of this study in developing informational, and psychological interventions to alleviate caregivers' stress and anxiety.