Perceived advantages of patient involvement in improving their own safety (Table 1).

Study participants from all groups were generally positive towards the notion of patient involvement in improving their safety and identified potential advantages. For example, patients and their relatives said that they welcomed the opportunity to be able to ask questions or have their concerns addressed, since this provided them with reassurance and a better understanding of what was happening to them and what to expect. As well as helping them to feel “more part of things”, understanding what was happening and knowing what to expect was also seen by patients as essential to them taking a role in improving their own safety. Staff said that they welcomed questions from patients since “it shows that they are interested in their care”. Perceived advantages expressed by staff were improved adherence to treatment and greater patient satisfaction with care, achieved through better understanding. A further advantage of encouraging patients, especially “the quiet ones”, to engage with staff whilst they are in hospital was of being able to “nip problems in the bud”. A common scenario for wards was of patients waiting until they were discharged before reporting concerns, by which time issues that could have been resolved (and harm mitigated) had escalated. Despite this general positivity, subsequent discussion of potential ways in which patients and their relatives might make a contribution to improving their own safety, revealed that some currently recommended behaviours or actions were problematic.

Concerns about involving patients in improving their own safety (Table 2).

In particular, patients and relatives expressed concerns about actions that encourage them to “check” that their care is being delivered correctly and appropriately, and engaging directly with healthcare professionals if they think something is not quite right. Within this context of pushing improvement through patient-mediated intervention, pointing out potential errors or oversights in care provision was felt to be “questioning” or challenging the professionalism of healthcare staff. The discomfort expressed by patients was primarily related to their perceptions of these behaviours as being critical or judgemental of staff, or that staff would interpret such user intervention as criticism. Several staff identified with this patient perspective, sometimes drawing on personal experience of being a patient or the relative of a patient. Asking healthcare professionals if they had washed their hands was particularly problematic, with most patients stating that this was something they probably or definitely would not do. Of those patients who said they would not have a problem in asking this question, doing so was contingent upon other factors – for example that their intervention could be justified by a strong concern (sometimes based on previous experience of hospital acquired infection) or observation that hand washing had not occurred. Other actions perceived by patients and relatives as “challenging” or as “criticising” included overtly or explicitly checking that the correct medicines had been administered during drug rounds and asking about alternative treatment options to those recommended by their doctor.

For frontline healthcare staff, demands on their time and increased workload burden were very prominent concerns. However, their accounts also mirrored the patient perception that active patient identification of safety concerns involves “checking up on” and “challenging” healthcare staff. This concern was expressed by some staff as anxiety about being asked questions to which they might not know the answers and by others as a frustration at having their professional status or integrity challenged. Staff also spoke of feeling overly scrutinised by both service-users and the system within which they work and how this negatively impacts on staff morale.

In aiming to understand respondents’ beliefs underlying their concerns, we asked them to elaborate on their misgivings and what they felt might be the consequences of patients doing things they perceived to be confrontational. Several related themes were identified but one key common theme emerged from the accounts of patients, relatives and healthcare professionals, namely risk of damage to the patient provider relationship.

Risk of damage to the patient-provider relationship (Table 3).

Erosion of patient trust in the competency of the healthcare professional: Patients often commented that they “had to put their trust” in those providing their care, because “you put your life in their hands” when you go into hospital. Whilst there is an element of “hope” within this, there was also a general expectation that healthcare providers “know what they are supposed to be doing” and a common assumption that they always did what they were supposed to do. For example, washing their hands appropriately, knowing that the leg they were about to operate on is the correct one, or giving out the correct medications were deemed part of the professional’s ‘job’. Some patients felt (quite strongly) that they “shouldn’t have to ask” about such things, expressing a fundamental reliance on healthcare providers to deliver care professionally. Whilst such perceptions are clearly linked to role expectations, this stance resonates with popular conceptualisations of trust within the context of healthcare, wherein (patient) trust in their care provider(s) is associated with expectations of goodwill and competence on the part of those trusted [21]. This suggests that some patients may experience a loss of trust in the competency or integrity of their care providers, if they feel that they “have to” ask or tell them about potential lapses in their care, because they are not doing the job properly. This concern was mirrored by some healthcare professionals who felt that raising awareness about safety issues might erode patient trust in them as competent practitioners and reduce confidence in the services they provide.

Erosion of healthcare professional trust in the “good” patient: Patients and relatives expressed concern that they, in the context of identifying safety concerns, might be perceived less favourably by care providers by appearing rude, offensive or critical, especially when the patient or relative had (on the face of it) a good rapport with their care provider. In addition to the risk of damaging a good rapport with individual staff, this concern was also linked more broadly to the risk of being labelled as “difficult”. Patients and relatives were generally hesitant about asking “too many questions” as they did not want to be seen as “pushy” or “awkward”. This sense of insecurity and mistrust in care providers was also apparent in the belief that “demanding” patients might be “discussed by staff” and thus flagged to other colleagues on the ward. Being labelled in this way was something that healthcare staff confirmed as a potential risk for enquiring service-users. Linked to patients’ reluctance to offend was a similar reluctance to overstep what might be understood as traditional role boundaries. Checking or asking if providers were “doing their job correctly” or appearing to contradict their clinical judgement, was felt by some to be “insulting their professionalism” and that it was “not the place” of the “lay” service-user. These beliefs were expressed even if the patient or relative felt that they were the better informed party, and were also evident in the accounts of healthcare professionals speaking from their experience as patients and relatives. Quite notably there was a common tendency amongst staff to talk about patients and relatives asking questions in the context of complaining rather than information seeking or sharing. Some staff further reported being suspicious of patients and relatives who asked questions, raised concerns or wrote things down, and questioned their motives; interpreting such actions as preparation for making or backing up a complaint. This was despite a general understanding and empathy amongst staff for the service-users’ need for information.

A seemingly very important concern for patients was that healthcare professionals would somehow “treat the patient differently” as a consequence of upsetting them and the balance of rapport between them. Further probing revealed that this might happen in two ways: fear of being rebuffed or chastised; and fear that care might be somehow compromised.

Staff may treat the patient “differently” (Table 4).

Fear of being rebuffed or chastised: Healthcare providers were expected to always remain “professional” in their dealings with patients and their families, regardless of the situation, and there appeared to be a general consensus amongst both patients and healthcare professionals that most would. However, there was a common belief that, some care providers might not respond favourably to being asked a seemingly challenging or critical question. Being rebuffed or chastised was a very real fear for many patients, and a key barrier to them speaking up. In assessing the potential receptiveness of staff, patients described being acutely sensitive to the perceived “demeanour” and personality of those providing their care and how staff interacted with them, their relatives, other patients, and other staff. The uncharacteristic, sometimes extreme, vulnerability that patients appear to experience whilst in hospital serves to intensify this heightened sensitivity. It was apparent from staff accounts however, that chastising patients and relatives does happen, and that this may be done both actively and passively.

Fear that care might be compromised: An additional belief expressed by patients was that some staff “may not look after” the patient as well as they had done before if patients or their relatives upset them. Respondents struggled to articulate exactly how they felt that a patient’s care might be compromised and were eager to clarify that they didn’t really believe that staff would do anything so blatantly inappropriate as to cause them harm. Patients expected that they would still receive adequate “basic care” on the basis of an (accountable) professional duty, or code of conduct. It was felt that healthcare staff might become less attentive and perhaps even (deliberately) make patients wait for aspects of care – for example by being slow to respond to a bell call or by making patients wait for assistance in bathing. More generally though the concern again focussed on relationship issues - in that staff (regardless of whether they overtly demonstrated offense or not) might be less empathetic or sincere in their interactions with patients or less likely to act on or take their concerns seriously. It is notable that these concerns were shared by healthcare professionals when reflecting on their own experience of being a patient, or the relative of a patient.

Behavioural implications of service-user fears (Table 5).

For some patients, the perceived consequences of upsetting staff, and disrupting relationships, were so powerful that they admitted not sharing potentially serious queries or concerns even with their relatives, who they knew would immediately raise them with staff (Table 4; Patient 15). Others suggested that it would take contracting an infection to make them feel sufficiently empowered (and justified) to ask a healthcare provider to wash their hands. Patients suspecting that a member of staff might be unreceptive to being asked questions, or for assistance, reported avoiding interactions with these individuals. Arguably such avoidance, in a similar way to not sharing concerns with their relatives, serves to put patients at greater risk of harm. Furthermore, this “self-protection strategy” was not restricted to those who feared being left feeling emotionally “bruised” by being rebuffed or who feared retribution. For some it was simply an understandable preference to interact with “nice” or more pleasant staff. An additional consequence of this, that warrants mention, is the potential increased burden on “nice” staff, since patients will purposely wait to target them with their queries.

Behavioural implications of healthcare professional fears (Table 5).

Some staff suggested that they and their colleagues could become guarded in their interactions with certain patients and their relatives, therefore distancing themselves from being the potential target of a complaint. Amidst such concerns, provider accounts also demonstrated evidence of the adoption of other self-protective behaviours. For example, in addition to “distancing” themselves, some staff reported: keeping detailed records of interactions and conversations with patients or relatives suspected to be planning a complaint; of limiting opportunities for patients and/or relatives to ask questions; and of providing only limited information.