Elsevier

Journal of Critical Care

Volume 25, Issue 4, December 2010, Pages 634-640
Journal of Critical Care

Opinions of families, staff, and patients about family participation in care in intensive care units

https://doi.org/10.1016/j.jcrc.2010.03.001Get rights and content

Abstract

Purpose

The aims of the study were to assess opinions of caregivers, families, and patients about involvement of families in the care of intensive care unit (ICU) patients; to evaluate the prevalence of symptoms of anxiety and depression in family members; and to measure family satisfaction with care.

Materials and Methods

Between days 3 and 5, perceptions by families and ICU staff of family involvement in care were collected prospectively at a single center. Family members completed the Hospital Anxiety and Depression Scale (HADS) and a satisfaction scale (Critical Care Family Needs Inventory). Nurses recorded care provided spontaneously by families. Characteristics of patient-relative pairs (n = 101) and ICU staff (n = 45) were collected. Patients described their perceptions of family participation in care during a telephone interview, 206 ± 147 days after hospital discharge.

Results

The numbers of patient-relative pairs for whom ICU staff reported favorable perceptions were 101 (100%) of 101 for physicians, 91 (90%) for nurses, and 95 (94%) for nursing assistants. Only 4 (3.9%) of 101 families refused participation in care. Only 14 (13.8%) of 101 families provided care spontaneously. The HADS score showed symptoms of anxiety in 58 (58.5%) of 99 and of depression in 26 (26.2%) of 99 family members. The satisfaction score was high (11.0 ± 1.25). Among patients, 34 (77.2%) of 44 had a favorable perception of family participation in care.

Conclusions

Families and ICU staff were very supportive of family participation in care. Most patients were also favorable to care by family members.

Introduction

The intensive care unit (ICU) is one of the places in the hospital where families experience the most [1]. Symptoms of anxiety and depression were common in families of ICU patients [2], and posttraumatic stress symptoms with adverse effects on quality of life were found in 33% of family members 3 months after ICU discharge [3]. These findings prompted extensive studies of the needs of family members of ICU patients [4], [5], [6]. Families need information, reassurance, and support, and they need to be near the patient [7]. To meet these needs, family-centered care has been developed in ICUs. Family-centered care is a global philosophical approach in which families are both recipients of care aimed at optimizing their well-being and active participants in care provided to the patient. Family participation in care is only one component of family-centered care. Because ICUs must use a high level of organization to ensure optimal care to extremely vulnerable patients, family-centered care has often been perceived as a source of unwelcome and perhaps dangerous interference. Thus, families of ICU patients have been allowed limited visiting hours, and their role has consisted chiefly in waiting for information. A major step toward changing this situation was the identification of family needs by Molter [7] 2 decades ago by the Critical Care Family Needs Inventory. Later, the Critical Care Family Satisfaction Survey was validated [8]; one of its items is “ability to share in the care of my family member.” Use of these tools established that both family satisfaction and satisfaction of ICU staff with their work could be improved by allowing greater proximity of the family to the patient, giving greater attention to the patient's wishes, decreasing patient and family isolation, and integrating the family into the ICU [9]. Thus, families are best viewed as partners in caring for the patient. To establish an effective partnership with families, ICU staff must have a good understanding of family needs [10]. Implementing family-centered care requires strong leaders and caring staff members, as well as time and patience [11].

For many years, our ICU has striven to improve the quality of life of patients, family members, and ICU staff via an approach based on leadership, ownership, values, and evaluations (L.O.V.E.) [12]. The rationale for this approach, directed at both the staff and the families, is that good leadership, feeling valued, and having beliefs and fears taken into account may promote understanding and cooperation between ICU staff and families, decrease anxiety, and improve care and the quality of life in the ICU. The L.O.V.E. program was started in 1995, although some of its components such as around-the-clock visiting hours for relatives were implemented only in 2000 [13].

The L.O.V.E. program does not include routinely encouraging families to participate in patient care; instead, families who spontaneously express a wish to participate are allowed to do so. Because we felt that encouraging family participation in care may be warranted [8], [9], we conducted this study to determine how families, ICU staff, and patients perceived family participation in patient care, to evaluate the prevalence of symptoms of anxiety and depression in family members and to measure family satisfaction with care.

Section snippets

Methods

The study was performed in the medical-surgical ICU of the Saint Joseph Hospital, a 460-bed tertiary-care hospital in Paris, France. The ICU has 10 single rooms and admits about 400 patients per year. The nurse-patient ratio in the unit is 2.5 and was unchanged during the study period. Families can visit around the clock and can stay as long as they wish. A waiting room is available for families. Information is given to the family members when they are in the unit to visit the patient; however,

Characteristics of patients, ICU staff, and families

Of the 220 patients admitted to the unit during the study period, 129 (49.5%) spent more than 3 days in the ICU and formed the basis for this study. We excluded 28 patient-relative pairs for the following reasons: no family visits during the ICU stay (n = 13), second admission (n = 5), family not fluent in French (n = 4), family refusal to participate in the study (n = 3), failure to hand out the questionnaire (n = 1), and death of the patient on day 4 (n = 2). This left 101 patient-relative

Discussion

This study found that ICU staff members, families, and patients were very supportive of family participation in selected care activities. The low rates of symptoms of anxiety and depression and high satisfaction scores in the families may reflect the strong emphasis placed on family-centered care in our unit. Perceptions were favorable for most of the 13 selected care activities, the only exceptions being bathing and oral secretion aspiration. The care activities that families spontaneously

Acknowledgments

We thank A. Wolfe, MD, for helping to prepare this manuscript, and Michelle Tabah, psychologist, for reviewing the questionnaires. We are grateful to the nurses, nursing assistants, and physicians who participated in data collection. We are particularly indebted to the nursing assistants Viviane Flamant, Marie Nadège Rosemblum, and Christelle Jeannot.

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