Experiences of family caregivers for adults with oxygen dependent COPD

This study investigated the caregiving experiences of family members who care for oxygen dependent adults with chronic obstructive pulmonary disease (COPD). A grounded theory design was used with a sample of 13 English speaking primarily non-urban caregivers who provided uncompensated care for oxygen dependent family members. Interviews using a semi-structured openended interview guide were audiotaped and analyzed using constant comparative analysis to develop the caregiving model. Findings suggest that caring for a family member with COPD was like taking a journey. The three step model starts with Learning to Drive where caregivers learned about COPD and the required care regimen while care recipients remained independent. The second stage, Navigating the Bumps, where caregivers learned to balance care recipients' need for independence despite increasing care requirements, was very difficult for caregivers. During this phase caregivers learned to use strategies to help them that included Negotiating, Getting Help, Watching, and Coping. Negotiating involved mutual decision making by care recipients and caregivers in order to maintain the care recipients' independence and the caregiver's lifestyle as care recipients required more assistance. Getting Help described strategies caregivers used to get assistance from others. Watching referred to the constant vigilance most caregivers employed to assess their family members. Coping included the emotional responses and personal health strategies caregivers used. The final phase of the caregiving model, End of the Road, described how caregivers and care recipients faced death and how the caregiver was often able to find comfort and satisfaction from the caregiving experience. Findings suggested that caregivers may not ask for assistance with caregiving and may not recognize changes in their health. Additionally, continued tobacco use by the care recipient may be very distressing and confusing to the caregiver. Further study is needed to investigate the experiences of male, non-Caucasian, and rural caregivers so that nursing interventions can be developed to meet their needs. Interventions enabling caregivers to effectively intervene when care recipients continue to use tobacco need to be identified as well.