Annelise Norlyk1, Bente Martinsen. 1. Department of Nursing Science, Faculty of Health Sciences, Institute of Clinical Medicine/School of Public Health, Aarhus University, Denmark. an@sygeplejevid.au.dk
Abstract
AIM: To report a study of the lived experience of being a close relative to a patient with colon cancer participating in a fast-track programme. BACKGROUND: Studies have documented that postoperative recovery can be accelerated and that hospitalization can be reduced through fast-track programmes. Due to the early discharge and the increasing demands on patients for self-care, patients' relatives seem to play a pivotal role in fast-track programmes. However, research is limited into how patients' close relatives are affected by and involved in the postoperative recovery process. DESIGN: A descriptive phenomenological approach using Reflective Lifeworld Research. METHODS: The study was carried out within the descriptive phenomenological framework of Reflective Lifeworld Research. Data were collected in 2008 from in-depth interviews with twelve relatives. FINDINGS: Relatives experienced a huge responsibility for both the patient's well-being and for the patient's compliance with the daily regimen. Relatives were caught in a conflicting double role. They were the extended arm of the health professionals but also the caring, supporting partner. A tension arose between relatives' desire to help the patient by taking an active part in the recovery process and the feelings of not always having the resources needed. CONCLUSION: Relatives seem to suffer in silence as they bear the burden of the patient's diagnosis, the disruption of life, and the taken-for-granted responsibility for the patient's recovery process. From an existential perspective, this caring responsibility can be understood as ethical pain. Relatives should be seen as a distinct group with special caring needs of their own.
AIM: To report a study of the lived experience of being a close relative to a patient with colon cancer participating in a fast-track programme. BACKGROUND: Studies have documented that postoperative recovery can be accelerated and that hospitalization can be reduced through fast-track programmes. Due to the early discharge and the increasing demands on patients for self-care, patients' relatives seem to play a pivotal role in fast-track programmes. However, research is limited into how patients' close relatives are affected by and involved in the postoperative recovery process. DESIGN: A descriptive phenomenological approach using Reflective Lifeworld Research. METHODS: The study was carried out within the descriptive phenomenological framework of Reflective Lifeworld Research. Data were collected in 2008 from in-depth interviews with twelve relatives. FINDINGS: Relatives experienced a huge responsibility for both the patient's well-being and for the patient's compliance with the daily regimen. Relatives were caught in a conflicting double role. They were the extended arm of the health professionals but also the caring, supporting partner. A tension arose between relatives' desire to help the patient by taking an active part in the recovery process and the feelings of not always having the resources needed. CONCLUSION: Relatives seem to suffer in silence as they bear the burden of the patient's diagnosis, the disruption of life, and the taken-for-granted responsibility for the patient's recovery process. From an existential perspective, this caring responsibility can be understood as ethical pain. Relatives should be seen as a distinct group with special caring needs of their own.
Authors: Lone Jørgensen; Birgith Pedersen; Birgitte Lerbæk; Helle Haslund-Thomsen; Charlotte Brun Thorup; Maja Thomsen Albrechtsen; Sara Jacobsen; Marie Germund Nielsen; Kathrine Hoffmann Kusk; Britt Laugesen; Siri Lygum Voldbjerg; Mette Grønkjær; Karin Bundgaard Journal: Nord J Nurs Res Date: 2022-06