Opin vísindi

Frustrated caring : Family members’ experience of motivating copd patients towards self-management

Frustrated caring : Family members’ experience of motivating copd patients towards self-management


Title: Frustrated caring : Family members’ experience of motivating copd patients towards self-management
Author: Sigurgeirsdóttir, Jónína
Halldórsdóttir, Sigríður
Arnardóttir, Ragnheiður Harpa   orcid.org/0000-0003-0670-8248
Gudmundsson, Gunnar
Bjornsson, Eythor Hreinn
Date: 2020
Language: English
Scope: 13
University/Institute: University of Akureyri
School: School of Health Sciences
Department: Faculty of Medicine
Series: International Journal of COPD; 15()
ISSN: 1176-9106
DOI: https://doi.org/10.2147/COPD.S273903
Subject: Langvinnir sjúkdómar; Stuðningsúrræði; Lungnasjúkdómar; Endurhæfing; Chronic illness; Pulmonary rehabilitation; Pulmonary and Respiratory Medicine; Health Policy; Public Health, Environmental and Occupational Health
URI: https://hdl.handle.net/20.500.11815/2993

Show full item record

Citation:

Sigurgeirsdóttir , J , Halldórsdóttir , S , Arnardóttir , R H , Gudmundsson , G & Bjornsson , E H 2020 , ' Frustrated caring : Family members’ experience of motivating copd patients towards self-management ' , International Journal of COPD , vol. 15 , pp. 2953-2965 . https://doi.org/10.2147/COPD.S273903

Abstract:

 
Aim: The aim of this phenomenological study was to explore principal family members’ experience of motivating patients with chronic obstructive pulmonary disease (COPD) towards self-management. Methods: Interviews were conducted with 10 family members (spouses and adult children) of COPD patients. The interviews were audio recorded, transcribed and analyzed thematically. Results: Being a principal family member of a COPD patient is characterized by frustrated caring; wanting the best for him/her and yet carrying a heavier burden than the person feels equipped for, lacking both knowledge about the disease progress and information about available healthcare resources. The situation demands much energy, due to COPD patients’ lack of stamina; family members’ fear of the patient’s possible breathlessness; willingness to help, though sometimes meeting with negative reactions from the patient; and feeling ignored by health professionals (HPs). Family members expressed a need for a formal connection between patient–family–HPs. The increasing burden experienced by patients’ family members is characterized by a sequential process in three phases of the patient’s declining self-management. In the early phase, family and patient are ignorant of COPD yet recognize the patient’s smoking as a risky lifestyle. In the intermediary phase, signs of COPD become evident to the family. The first turning point is when the family first observes the patient’s acute exacerbation. A second turning point is in the advanced phase, when family and patient recognize COPD as a progressive disease, possibly fatal. We also identified family members’ views on COPD patients’ needs, and their own roles, main frustrations and concerns. Conclusion: Family members’ experience of motivating COPD patients towards self-management is a sequential process where the family experiences advancing caring burden and declining self-management by the patient. We propose the establishment of COPD patients’ teams consisting of patient–family–HP, aimed at the patients’ best possible self-management.
 
Aim: The aim of this phenomenological study was to explore principal family members’ experience of motivating patients with chronic obstructive pulmonary disease (COPD) towards self-management. Methods: Interviews were conducted with 10 family members (spouses and adult children) of COPD patients. The interviews were audio recorded, transcribed and analyzed thematically. Results: Being a principal family member of a COPD patient is characterized by frustrated caring; wanting the best for him/her and yet carrying a heavier burden than the person feels equipped for, lacking both knowledge about the disease progress and information about available healthcare resources. The situation demands much energy, due to COPD patients’ lack of stamina; family members’ fear of the patient’s possible breathlessness; willingness to help, though sometimes meeting with negative reactions from the patient; and feeling ignored by health professionals (HPs). Family members expressed a need for a formal connection between patient–family–HPs. The increasing burden experienced by patients’ family members is characterized by a sequential process in three phases of the patient’s declining self-management. In the early phase, family and patient are ignorant of COPD yet recognize the patient’s smoking as a risky lifestyle. In the intermediary phase, signs of COPD become evident to the family. The first turning point is when the family first observes the patient’s acute exacerbation. A second turning point is in the advanced phase, when family and patient recognize COPD as a progressive disease, possibly fatal. We also identified family members’ views on COPD patients’ needs, and their own roles, main frustrations and concerns. Conclusion: Family members’ experience of motivating COPD patients towards selfmanagement is a sequential process where the family experiences advancing caring burden and declining self-management by the patient. We propose the establishment of COPD patients’ teams consisting of patient–family–HP, aimed at the patients’ best possible selfmanagement.
 

Description:

Funding Information: The participant informed consent included publication of anonymized responses, and this study was conducted in accordance with the Declaration of Helsinki. The Icelandic National Bioethics Committee gave ethical clearance for conducting the study (Reference number 17–120). The study was explained to the participants, in writing and orally , emphasizing that participation was voluntary and could be withdrawn at any time. All participants signed an informed consent which included a name and contact details of a person they could contact in case of emotional troubles caused by participation in the study . The study was funded by Oddur Olafsson scientific research fund at Reykjalundur Rehabilitation Institute, and the B-section of the Science Fund of the Icelandic Nurses’ Association. Publisher Copyright: © 2020 Sigurgeirsdottir et al.

Files in this item

This item appears in the following Collection(s)