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

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 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.