How do family-caregivers of patients with advanced cancer provide symptom self-management support? A qualitative study

Abstract

Purpose: The family-caregiver role is of critical importance to the success of symptom-related self-management of patients with advanced cancer. This study examined the perspectives of patients and family-caregivers regarding the role of the family-caregiver in symptom-related self-management support ( SMS).

Methods: Semi-structured interviews were conducted in patients with advanced cancer experiencing significant symptom burden and their family-caregivers. An inductive content analysis approach was used to analyse data.

Results: Eleven patients and ten family caregivers were included. Identified themes were 1) engaging in specific symptom-related SMS; 2) interacting with health care professionals; and 3) balancing patient need versus expectation. These themes were applicable to both the family-caregiver and patient cohorts, regardless of the individual symptom profile of each patient.

Conclusions: The role of family-caregivers of patients with advanced cancer is complex and varied in providing symptom-related SMS at home; often requiring family-caregivers to have diverse knowledge and skills in the management of a range of cancer-related symptoms. Health care professionals can support family-caregivers by anticipating needs, tailoring evidence-based information to those needs, and ensuring family-caregivers have an appropriate contact point for advice or help.

Keywords: Advanced cancer; Family-caregiver; Interview; Qualitative; Self-management support; Symptom.