Including Family in Patient Care in the Critical Care Setting: Ongoing Challenges

Editorial

Traditionally, the intent of nursing and medical care has focused on the patient. While family-centered approaches have been extensively described in the literature in regards to meeting patient and family needs during critical illness, actual practice may not demonstrate acceptance of important elements of family care. This may be due to several factors: lack of a framework that addresses the interrelationship between the patient, family and healthcare team; inadequate knowledge of family systems theory and family resilience; and perceived time constraints surrounding family involvement. Since Molter and Leske (1983) first identified the needs of family in the critical care setting, nurses have sought to find the best intervention to meet these needs [1]. Nursing & Health International Journal recently featured work by Chiara and Lucia (2018) on communication with the critical patient and his family members [2]. Additional needs, such as to visit or be near the patient, receive support from the healthcare team, learn about the patient’s care and treatment regimen, and to be involved in the care of the patient, have also been identified, most recently in several narrative and systematic reviews [3, 4, 5, 6, 7, 8, 9, 10, 11]. The majority of this editor’s clinical experience has been in the care of the critically ill and their families. It was a conscious decision not to separate the patient from the family when providing care, rather seeing both as integral parts of a whole, and recognizing the role the nurse played as intermediary between the family and the healthcare team. This became even more important during the recent hospitalization of an acutely ill family member [12]. The Patient and Family Access Model of Care© [13] was developed based on these experiences. It describes patient- and family-centered principles that facilitate a partnership between healthcare providers, the patient, and the family. The core of the model centers on identifying family needs, and incorporating concepts of family resilience and systems theory to give meaning to the patient and family experience during illness and recovery [14, 15, 16]. While initially developed for the critical care environment, it is applicable to a variety of patient care settings. A study conducted in two critical care units at a large academic medical center in the U.S. Midwest region used the model in a multi-dimensional approach to patient and family care. Prior to the start of data collection, focus groups were held with physicians and nurses who worked directly with critically ill patients and their families. In the focus sessions, physicians emphasized the importance of communication, but that availability to meet with family members was an issue. Many nurses felt that family members provided comfort and support to the patients, but that educating and explaining took too much time away from patient care. However, when asked if nurses were able to explain and educate to a conscious patient, the majority agreed that this was an important intervention. Both groups reported that most of the patient’s healthcare information was received from the family during the admission process. Still, many nurses perceived that time spent providing updates on the patient’s current medical progress to more than one family member were a deterrent. All agreed that patients and family had needs, but many nurses were uncertain if the nurse should be the one responsible to meet those needs while the patient was critically ill. The belief was that it caused a shift in focus away from the patient, and was a potential source of tension between the nurse and family. Conflict can occur when significant others view their presence at the bedside as a sign of loyalty and commitment, while providers are concerned that members will interfere with the provision of care or undermine authority [17]. Why the importance of including families as partners in the patient’s care, and what part do nurses play?

• Nurses need to recognize the role of the family during the healthcare experience, and the association between the family and the health status of its members, in order promote a culture that supports family engagement. Any change in family functioning, such as experiencing illness or loss, affects the entire family. Nurses who have knowledge of family systems are better equipped to assess a family’s reaction toward illness or the recovery process.
• Family members can serve as the historians of the patient’s personal and medical history, and are the voice for the unresponsive patient. It is often family members who recount the events during hospitalization with the patient during the recovery period. Nurses must recognize that information must be provided to family members to assist them in “filling the gaps” caused by illness.
• Patients experience shorter lengths-of-stay, and may be discharged to long-term care or to home care. Families may then be called upon to assist in the care of the patient. Family members must learn about interventions and other aspects of care during the patient’s hospitalization, commencing upon admission, in order to prepare them for discharge. Failure of families to adequately assist in care due to a knowledge deficit might result in a patient’s readmission. In the US, this has gained prominence in that federal funding to hospitals is impacted if patients are readmitted within 30 days of discharge.
• Finally, the most fundamental intervention is shared communication. Nurses need to find time to provide information to both patients and their families that doesn’t interfere with the delivery of care. Lack of transparent communication may result in conflict between the patient, family, and healthcare team. Alleviating the sources of conflict is dependent on establishing and maintaining quality communication between the nurse, patient, and family, as well as sharing responsibility for the care of the patient.