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Abstract

This study’s objective was to better understand family members’ experiences in order to identify how healthcare organizations can facilitate their participation in the care of a hospitalized loved one. Eighteen individuals at the bedside of a hospitalized loved one were interviewed individually. Roles at the bedside and factors that facilitated their participation or represented barriers were examined. A qualitative analysis using a mixed inductive/deductive approach was performed. Reassurance and emotional support, as well as sharing information with the healthcare team emerged as main roles. Quality and timeliness of the information received about the patient’s condition, prognosis and changes in medical condition, as well as information on how to participate in their care, were the factors most frequently evoked as facilitating participation. On the other hand, the need to improve communication channels and access to doctors were highlighted. Most family members having no prior knowledge or exposure to healthcare environments reported feeling overwhelmed in this foreign environment. Among the suggestions on how to improve their experience, having a well-identified contact person who liaises with them and who can instruct them on how to participate in care during hospitalization and back at home was frequently suggested. Furthermore, many mentioned that recognizing the experiential knowledge they have of the patient allows for more holistic care and contributes to improve both patient and family experience. Families need to be adequately recognized and supported and have access to information in a timely manner so that their contribution to their loved one’s care is maximized and the burden associated with this stressful experience alleviated.

Creative Commons License

Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.

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