This study of ICU practices in the Nordic countries revealed variation between countries in the involvement of family members in care activities and ward rounds. Participation in patient care and ward rounds has been described as central to family members' ability to make sense of what has happened. Family involvement is about engaging families to partner with the nursing staff. Nurses must actively explore how family members can participate, while also keeping the patient's preferences in mind.2, 3, 9 In the free-text comments, patient safety, confidentiality and integrity were mentioned as essential aspects to be considered when deciding whether to invite family members to participate in patient care and ward rounds. However, the finding that some nurses from all four countries stated that family members rarely or never participated in patient care or ward rounds could reflect a different practice of family participation in some ICUs. Negative effects of family involvement such as staff burnout and decreased work satisfaction have been reported.26 These factors may also influence the approach of some ICU nurses in the Nordic countries. Furthermore, both family- and ICU-related barriers to family caregiver involvement have been identified: for example, a lack of family resources to participate in patient care and the professional practice environment.27
As shown in Table 2, 82% to 97% of the participating nurses stated that family members were often included in decision-making when the patient was unable to give consent to decisions: for example, about the level of medical treatment. This finding identifies decision-making as a highly prioritized area of family involvement.
The results from our study raise the question of whether ICU nurses' level of knowledge of evidence supporting active family involvement in the ICU transforms into their actual practice. ICU nurses in the Nordic countries have generally had a very good clinical education (Table 1), and in some of the countries, family care is part of the national ICU nursing curriculum. However, the number of nurses with additional academic education varied substantially, which may influence the implementation of evidence-based practice. Also, differences could exist between what nurses would prefer to do and what they are able to achieve.28
As recommended in the framework of patient- and family-centred care,2 high-quality communication and information are essential to family satisfaction and engagement. In the current study, few ICUs had fixed plans for family conferences. Instead, these were reported to take place when requested by the family members or the staff. Family engagement may be enhanced using different methods, and a structured plan for daily communication involving doctors may improve trust in the family-staff relationship.29
Using leaflets and diaries can help reduce family anxiety and stress,30 and video-based information can support the existing formats and may appeal to families with reduced reading ability. In this study, the ICUs provided family members with written information about ICU practicalities and treatment, but less about being a family member of a critically ill patient. To relieve family anxiety or stress, it might be beneficial to provide written or video-based information focusing on family experiences and coping.
Family involvement presupposes a relationship based on mutual respect and trust between family members and staff. A trusting relationship can be built through inclusive dialogue and information.31 The results of our study showed that family members were reported as being involved as active partners in communication processes, including decision-making discussions.
There seems to be a potential for improvement in the inclusion of child family members through active communication and information suitable to their age and level of understanding. The study findings show that there are seldom child visitors in many of the ICUs, children are not always given information directly by staff and parents are not advised about how to include their children. According to Knutsson et al,11 parents often instinctively seek to protect their children by keeping them away from the ICU. To overcome this well-intentioned barrier, three elements are needed. First, nurses must be motivated to engage with the parents to meet the needs of a child visitor. Second, the parents should receive advice on how to best include children in the ICU family situation. Thirdly, children need individual support and guidance. When one of the parents is the patient, supporting both child and parents is of particular importance.
Visiting policies and practices
In a Canadian study of how ICU families work to get through the situation, the authors state: “It starts with access!,” highlighting access to the ICU as fundamental for families.32 In line with current international recommendations, most of the ICUs in the Nordic countries report having open or almost open access for family members.2, 26, 33
In combination with liberal visiting practices, including family members in the ICU is to acknowledge the concept of patient- and family-centred care.4 However, an international study has shown that even in ICUs with a liberal visiting policy, family members still spend time waiting outside the patient's room during examinations or treatment.34 This might also be the case in the Nordic countries. In ICUs with restricted access for families, time spent waiting outside the patient's room has a greater impact on family members' actual time with the patient.
A literature review revealed that in eight of nine studies, family satisfaction increased with liberal visiting policies,35 which might reduce not only family distress and anxiety but also the patient's suffering.22, 26, 33, 36 However, even though open access was common practice in the current study, several barriers to family presence were described, such as patient safety, integrity, tiredness, stress and environmental factors while the nurses tried to balance the needs of the family, patient and staff. Similar barriers have been identified in other studies.20, 37, 38 In the current study, the final decision on family bedside presence was made at the discretion of the ICU nurse.
Family presence during CPR of adults in the ICU is not common practice in the Nordic countries, even though some nurses reported experiences of this (Table 2). There is strong evidence to support family presence during CPR.35 It has therefore been suggested to allow family presence by default.35 Further, over the past two decades, international professional organizations, including ICU nursing organizations,39 have recommended allowing family presence during CPR. Although they did not allow family presence during the resuscitation of adults, several nurses in our study commented on how they made efforts to allow parents to be present during the resuscitation of a child. This distinction in the attitude towards the resuscitation of adult and child patients is also reflected in other countries.40 However, medical ethicists have argued that from an ethical perspective excluding family members from the resuscitation of an adult patient can be more ethically challenging than excluding the parents of a child.41 Consequently, allowing family presence during the resuscitation of adult patients in the ICU seems to be an aspect of family presence and involvement where evidence and practice are still not aligned.
The nurses in this study reported that their family-centred care approaches were influenced by tradition, experience and scientific evidence. The shift from seeing the patient as their main priority towards active involvement of the family can be challenging for ICU nurses to adopt and implement.27 In the present study, none of the nurses referred to ICU guidelines or formal unit policies on family-centred care. Lack of organizational policies has been found to hinder nurse-promoted family engagement and involvement,22, 26, 33, 36 pointing to a need to develop guidelines for ICU staff interaction with family members.
Also, organizational responsiveness factors are essential to change family care in the ICU.42 A healthy work environment with sufficient qualified staff is fundamental, as are patient room facilities that are welcoming for families.32 Furthermore, well-functioning systems of recording information on families in the ICU to ensure continuity in all aspects of family care are needed in the Nordic countries.42