Roles of informal caregivers in communication with healthcare professionals to gain patient-tailored care for patients with heart failure or COPD: a qualitative study

Abstract

Background: In patient-tailored care (PTC) awareness is increased for wishes and demands of patients. Informal caregivers (IC) play a fundamental role in PTC, particularly when patients have chronic illnesses such as heart failure (HF) and chronic obstructive pulmonary disease (COPD). Existing research is limited to general communication research or research on communication regarding specific illnesses. As roles of IC in communication differ for each type of illness, insight is needed in roles of IC of HF/ COPD-patients to adjust PTC and communication accordingly. Aim: To gain insight in which roles IC see for themselves in communication with health care professionals (HCPs) to reach PTC for their loved ones with HF or COPD. Methods: A generic, qualitative study is conducted. Maximum variation sampling was conducted to recruit IC of loved ones with HF or COPD in the north-eastern part of the Netherlands. A topic list was used to structure interviews. Data collection and thematic analysis took place iteratively using software program Atlas.ti. Results: Semi-structured interviews were held with twelve participants. Main themes which emerged from the interviews are taking control in communication, decision-making, asking questions, practical support and intervening in the process of care. These themes can be divided into sixteen different roles. Conclusion: IC see different current roles for themselves in communication with HCPs to gain PTC for their loved ones, which vary from highly active roles to minimal or no interference in communication. Implications of key findings: IC are of great importance in current society. Further exploration of their needs is necessary to tailor care for both patients and IC. A quantitative follow-up study is required, and further research is recommended on use of technology in triadic communication and on involvement of multiple IC in care.