Flying Blind: Sources of Distress for Family Caregivers of Palliative Cancer Patients Managing Pain at Home

Abstract

Pain requiring treatment is experienced by many cancer patients at the end of life. Family caregivers are often directly implicated in pain management. This article highlights areas of psychosocial concern for family caregivers managing a family member's cancer pain at home as they engage in pain management processes. This article is based on the secondary analysis, guided by interpretive description, of data collected for a grounded theory study that explored the processes used by family caregivers to manage cancer patients’ pain in the home. Interviews and field notes from 24 family caregiver interviews were examined to identify areas of family caregiver psychosocial distress. The analysis revealed that family caregivers experienced distress at different phases of the pain management process. Sources of distress for caregivers included feeling as though they were “in a prison” (overwhelmingly responsible), “lambs to slaughter” (unsupported), and “flying blind” (unprepared). In addition, family caregivers expressed distress when witnessing their loved one in pain and when pain crises invoked thoughts of death. In sum, family caregivers managing a loved one's cancer pain at home are at risk for psychosocial distress. This study identified four key sources of distress that can help health care professionals better understand the experiences of these family caregivers and tailor supportive interventions to meet their needs. Knowledge about sources of distress can help healthcare professionals understand the experiences of these family caregivers and tailor supportive interventions to meet their needs.

KEYWORDS:

• family caregivers
• psychosocial distress
• pain management
• palliative care
• home care
• oncology