A Qualitative Study of Family Members of ICU Patients Who Require Extensive Monitoring

Purpose: Monitoring technology has become more high tech and complex in healthcare over the last ten to fifteen years. The computer age has facilitated the development of a host of more sensitive invasive and non-invasive monitors with which healthcare professionals both monitor and deliver therapy to critically ill patients. Accompanied by the emergence of this extensive monitoring technology is a growing gap between the healthcare providers who use the technology when caring for critically ill patients and the patients’ family members who strain to understand and cope with its use.

In order to provide education materials that address family concerns related to high tech monitoring equipment, we need a better understanding of the family’s perception of the equipment. We need to understand their perception as seen through the eyes of family members. Little is written about the family members’ experience related to monitoring equipment. The greatest need of ICU family members is information about the patient’s status and about the equipment in use. Therefore, it is important to explore the experience of family members who observe their critically ill loved one receiving high tech monitoring and therapy. The study utilized both survey data and a qualitative hermeneutic interpretive phenomenological approach to explore family members’ perceptions about the extensive monitoring technology used with their critically ill family member following cardiac surgery and the education provided to them.

Methods: Following approval by the hospital institutional review board, investigators used purposive sampling to select study participants during patient visitation in the Cardiovascular Surgery ICU for this mixed methods study.  Inclusion criteria consisted of English-speaking family members of patients who had cardiac surgery and with whom extensive monitoring technology was utilized. Additionally, family members must have visited the patient in the ICU during the time that the patient had extensive monitoring in place. Digital recordings were transcribed and verified by the study team.

The data collection methodology consisted of a researcher-generated demographic data sheet and the use of a semi-structured interview guide with which to conduct family research in a group interview setting. Participants completed Spielberger’s State Trait Anxiety Inventory (STAI) at the outset of the interview session. Each member of the family (maximum of four family members) was consented and interviewed as a family. Diekelmann’s descriptive phenomenological method was used to analyze interview data. To ensure trustworthiness of the data, the PI secured the services of a professional colleague, familiar with qualitative research, to review the interview transcripts and interpretive findings for accuracy and consistency.

Results: Despite efforts to recruit a representative sample, the study sample consisted of four Caucasian families and one Hispanic family. Five general themes emerged from the analysis of five family interviews. They were: 1. Overwhelmed by all of the equipment; 2. Feelings of uncertainty; 3. Methods of coping with uncertainty; 4. Meaning of the numbers on the monitors; 5. Need for education.

Conclusion: Younger family members and those with information technology-associated jobs were more likely to educate themselves using online resources. Older family members preferred to ask nurses questions as a means of educating themselves. Early in each of the interviews families praised nurses for providing “all the necessary education”, while later in the interviews all family members identified educational needs and missed opportunities for education.