What relatives of older medical patients want us to know - a mixed-methods study

During a hospital stay older medical patients are often accompanied by relatives. These relatives have important knowledge about their older relative, since they are involved in managing their daily life activities [1, 2], and they often feel responsible for the older person’s wellbeing, monitor their professional care and advocate for quality care aimed at increasing the older person’s chances of staying independent [3, 4].

Health-care utilization, mainly inpatient care, increases with age, especially in high-income countries [5]. In Danish medical wards, patients above 65 years old constitute 53% of all admissions [6]. Both national and international policy strategies focus on increasing the involvement of patients and relatives in care and in care decisions to ensure an individualised care trajectory that meets both patients’ and relatives’ expectations [7, 8]. However, there seems to be a gap between policy and practice, since a national survey shows that patients and their relatives in the Capital Region of Denmark feel less involved in their care trajectory than in other regions [9].

Many relatives take on the role as case manager of the hospital trajectory to pursue continuity and high-quality care for the older patient, and their satisfaction with care and treatment is tied to the degree of collaboration with the hospital staff as well as to their reported feelings of guilt and powerlessness [1]. This indicates that relatives have emotional issues related to the hospital context that affect their experience and perceptions. An Australian study explored the immediate needs of relatives of acutely ill older patients through interviews (n = 10) and found that being informed and being there were essential for relatives. However, participants were included at both medical and surgical wards and therefore differs from our patient group of older medical patients [10]. A systematic review from England examining both patients’ and relatives’ perspectives in acute care settings found that relational approaches to care led to more positive experiences during acute hospitalization [11]. As noted, collaboration between relatives and staff is highly relevant when caring for older patients, but several studies show that this can be hard to achieve [4, 12, 13]. As an example, a review of staff-family relationships found that while families of older people value collaboration in care, staff members acknowledge its importance, but have difficulty translating theory into practice [12]. Relatives report that they have to stand up for themselves and for the patients in order to overcome these conflicts in values and the discrepancies in defining the patient’s situation [3, 14]. Greater knowledge of the values and areas that are most important to relatives would help the healthcare staff better understand and prepare themselves for collaboration with relatives.

Asking respondents to add free-text comments in questionnaires is common practice; However, it is less common to use them for analysis. Yet, they may increase our understanding of respondents’ responses and experiences and identify areas that are particularly important to the target group. This may guide development of clinical practice as well as future research [15]. An unexpected large amount of questionnaires were returned with free-text notes, and that raised our interest in what they wanted to tell us, as well as in what characterises the respondent, who puts time and effort into making free-text notes in an already comprehensive and demanding questionnaire. Out of respect for this effort, we further found that we had an obligation to use these data. The data material is part of a bigger study, and the quantitative questionnaire results are presented elsewhere [16]. To our knowledge, no studies have, until now, analysed free-text comments from relatives of older acutely admitted medical patients.

The main aim of this study was to explore aspects of the hospital trajectory, relatives needed to emphasize. The three categories that emerged were: the evasive white flock, absence of care and invisible & unrecognised. Relatives needed guidance and, at the same time, felt that they were in the way and a disturbance to the staff. The first category concerning evasiveness of the nurses seemed central to this paradox. Studies of how nurses view collaborations with relatives have found that although relatives are considered an important resource, in practice nurses try to avoid relatives, particularly if they are perceived to be demanding [13, 19]. Lindhardt et al. [13] found a pattern of ‘escape-avoidance’ conduct, which, from the relative’s point of view, may be perceived as unavailability as described in our study. The nurses’ non-verbal communication of time pressure further inhibited communication by making relatives hesitate to approach them to avoid disturbing their work activities. The inaccessibility of nurses and relatives’ reluctance to disturb staff are well-known problems in the collaboration between relatives and nurses. Literature has described these problems in different contexts, e.g. in medical wards [4], nursing home [20] and in complaints from both patients and relatives regarding encounters and communication at a large Swedish hospital [21] indicating its persistence and widespread occurrence. Our results indicated that what researchers have found to be culturally embedded behaviour of nurses is perceived by relatives as inaccessibility and as a barrier to contact and communication.

Absense of care was identified as the second category. Care is the essence of nursing [22]. However, the relatives in our study reported that in their experience, care was not always prioritised in everyday nursing practice, and they described in detail examples of this. There seemed to be a discrepancy between their expectations and the practice they encountered in the acute hospital context. Other studies have shown that relatives of older patients in acute hospital wards provide informal care [23]. Given the inclusion criteria (i.e. comorbidities and receiving home care) it may well be that the relatives in our study were informal caregivers. If so, they may have had special knowledge of the care needed by their hospitalised older relative, and when they observed that these needs were not met by the formal caregivers, it led to frustration. Relatives with a health education more often made comments. Taverner et al. [24] analysed the experiences of registered nurses who were also family caregivers of hospitalised older people, and found that these subjects experienced a culture of care where neglect were normalised, and therefore had to act “vigil by the bedside”, causing feelings of distress and disjuncture between their own identity as a nurse and the care they witnessed. Similarly, this vigilant monitoring has been described elsewhere, when caregivers’ unmet expectations were replaced by uncertainty and suspiciousness [4]. Theories of informal caregiving has identified worry and the protective dimension as central aspects [25, 26]. Studies have shown that some relatives in acute medical wards ‘stand guard’ to protect the patient from flaws and poor care and that they feel responsible for the patient’s wellbeing [14]. The perceived absence of care, in our study, may create such worries and awareness, and this may explain the frustrations and the emphasis on the lack of care and collaboration expressed in the study.

In our study the relatives’ inclination to write free-text comments was highest among those with negative experiences. This tendency is also seen in a large study of patient satisfaction surveys (n = 75.769) where the least satisfied patients were most keen to elaborate in free-text [27]. The same applies to Garcia et al. [15] who has examined the use of free-text comments, and concludes that those who comment are either the articulate ones or those who have something negative to elaborate. However, this did not apply for a survey conducted among relatives of hospice patients, which showed that positive comments accounted for 75% of the free text comments [28]; hence, context seemingly is an influential factor. In the characteristics of the participants, we found that relatives scoring low on trust in our study more often elaborated in free-text writing. We cannot tell if these relatives lacked trust from the beginning and therefore were more observant and critical, or if trust disappeared due to the flaws in the care they experienced. However, trust is a value that lies within the concept of caring [29] and has been found to be central in a relative’s collaboration with health care professionals [17]. Relatives hand over their loved ones to the care of hospital professionals, and for informal caregivers, this requires trust. Relatives monitor how this responsibility is handled by the professionals, and whether care is provided with engagement and empathy is likely to form the basis for trust or distrust. In the psychometric testing of the FCS, trust was found to be a special factor dimension, indicating its significance in the nurse-relative collaboration [17]. The trust dimension was shown to be particularly important in the admission phase and to correlate with the quality of contact with nurses, indicating that relational and communicative aspects are related to trust. Further, the physical environment was correlated with trust [17]. The physical environment was mentioned in our study and in conjunction with the evasive nurses, it impaired contact and communication and therefore possibly also trust. Further, the relatives in our study expressed frustration when their need for information was not acknowledged by the staff. Also, if a relative’s knowledge about a patient’s situation is not taken into account, insecurity may develop and trust may be threatened. Studies have pointed out that a lack of care and information creates worries, doubt and distrust [10, 21], and other studies suggest that an accessible, listening and empathic nurse is a prerequisite for successful collaboration with relatives [12, 30].

Closely connected to the experienced evasiveness from the staff was the feeling of being “invisible and unrecognised” in the third category. The lack of exchange of information between relatives and staff stood out in the comments. Relatives, particularly informal caregivers, are important sources of information, with a special need for information, as they often take over the patient’s care after discharge. Communication is a prerequisite for collaboration which again is a prerequisite for sufficient exchange of information between staff and relatives [31]. A Danish study found that poor collaboration was significantly associated with relatives’ low satisfaction with the care trajectory [1]. In accordance with this finding, the majority of the respondents in our study were dissatisfied with the care trajectory, and a central complaint was the lack of collaboration and communication between relatives and nurses. Communication seemed negatively affected by several factors. The relatives described how communication with staff happened when they initiated it, which is in accordance with other studies [32]. This means that seemingly even resourceful relatives, such as our respondents, were unable to obtain the communication and information they needed. Further, our study indicated that discharge was an important time at which the need for coordination and communication was crucial. However, the relatives felt ignored and that their knowledge was not granted. Studies of strategies to improve discharge planning and increase satisfaction, emphasizes an individualised approach where involvement, support and communication are important factors [33, 34].

Seemingly, relatives call for nursing delivered in accordance with nursing values, but nurses seem reluctant to provide it. However, nurses report feelings of guilt and frustration because of their inability to provide good patient care in accordance with their own professional ideals [35]. It is noticeable, that although frustrated and worried by the absence of care and evasive nurses, the relatives in our study saw nurses as victims and sympathised with them due to their stressful working conditions. This, in accordance with the study of Lindhardt et al. [14], in which relatives blamed the system rather than the people working in it. Several studies have described the dilemma of today’s nurses working conditions, where nursing values compete with more powerful, organisational, value systems [31, 36]. New Public Management (NPM) and its value system governs the public sector and eldercare in Nordic countries including Denmark [37]. It represents an administrative-economic rationale and stands in contrast to nurses’ professional medical rationale [36]. Effectiveness and productivity are central values in NPM and form the fundamental conditions for clinical practice in which nurses are supposed to provide care, and the nursing values may therefore be challenged within this context.

In line with other studies investigating the experiences of relatives at hospitals, relatives in our study reported feeling uninvolved and ‘in the way’, which was a barrier for contact and communication with staff. Furthermore, collaboration was inhibited by the nurses’ evasiveness. Experiences with low-quality care seemingly sparked the inclination to write free-text comments, as we identified significant differences regarding the satisfaction and trust scored by relatives who wrote free-text comments versus those who did not. Factors such as lack of contact with staff, absence of information and care and not being involved were frustrating to relatives, who seemed to be keen observers of the busy atmosphere of acute wards and to have a clear vision of good quality care. Further studies are needed to investigate characteristics of relatives who want to collaborate with staff and to test interventions in acute care settings aimed at systematically involving relatives.