Overall satisfaction with care

A number of the included studies reported on overall satisfaction with care quality. This included one qualitative study in which Williams' [38] participants (n = 12) expressed their overall satisfaction with medical and nursing care in an acute setting. More of the quantitative studies reported on overall satisfaction with care, including one reporting an average Client Satisfaction Questionnaire score of 2.77 in which the maximum score was 4 [30] and another presenting an average PACIC score of 3.05 out of 5. However, these figures are difficult to interpret without comparison to groups without MLTC, which many studies did not include.

Peltzer et al.'s [34] quantitative study compared groups of people with and without MLTC. They found that participants with both coronary heart disease and mental disorders had lower scores on 5 of 9 patient satisfaction measures when compared with people with only coronary heart disease. Hewitson et al.'s [28] results also suggested that people with MLTC report poorer satisfaction with care when compared to those without, with participants with multiple life-limiting long-term conditions having a higher likelihood of reporting that their care experience was negative and a lower likelihood of reporting a positive experience when compared with people with no or a single life-limiting long-term condition. Burgemeister's [25] study, which included some participants with only one condition, reported no correlation between the number of chronic conditions and satisfaction with care. The same lack of correlation was present among veterans with two or more long-term conditions [24].

There was no clear consistency across studies in characteristics associated with levels of satisfaction. For example, characteristics that were associated in univariate analyses with greater levels of satisfaction (as indicated by higher mean overall PACIC scores) included high school or less education (vs. some college or higher education), a Veteran Affairs or hospital visit in the preceding 6 months, and other race (vs. white) [24]. In contrast, Hewitson et al. [28] found that belonging to a minoritised ethnic group was associated with lower ratings of care when compared with being White British. Hewitson [28] and Burgemeister [25] also reported that shorter length of stay was associated with greater satisfaction with care, while Balbale et al. [24] found no statistically significant association. These results also refer to study populations with different characteristics, making them difficult to compare—Balbale et al.'s [24] study recruited participants with MLTC exclusively, while Burgemeister et al.'s [25] sample included some participants with only one long-term condition and Hewitson et al.'s [28] study compared people with and without MLTC.

Barriers to care coordination and the case for integration

Several of the included qualitative studies presented a critical view of perceptions of care coordination and integration of care. Most of these criticisms concerned the fact that secondary care is focused on the specialist treatment of single diseases [23, 33, 38]. Two qualitative studies, for instance, reported that, rather than integrating care for all conditions experienced by the patient, acute conditions were prioritised by healthcare providers during hospital stays [33, 38], with only those conditions described as ‘highly significant to nurses', such as diabetes, attended to ([38], p. 16). This was despite the fact that Williams' [38] participants (n = 12) generally perceived their long-term conditions to be more troubling than their acute illness(es). Nevertheless, the focus on acute conditions was expected by most patients [38].

Overall, participants perceived that the lack of coordinated attention towards their long-term conditions exacerbated their symptoms, with positive impacts on their long-term conditions only occurring unintentionally in the midst of care for the acute illness(es) [38]. Participants were also left fearing, or indeed experiencing, new side effects, after reportedly receiving higher doses of their medications or their medications suddenly changing during their stay without explanation [29, 38].

As people living with MLTC are required to interact with many members of staff, it was also reported that they can receive conflicting information from different healthcare professionals and be unsure who to believe [27, 38]. There was a suggestion in some studies that this may be exacerbated when patients are uninformed or unaware of which members of staff are responsible for each condition [38] and uncertain of who to contact when they need support [23]. It was also noted that poor coordination can lead to people with MLTC being sent to multiple hospitals, leading to long waits for treatment to commence or medications to be prescribed [32] and logistical issues such as frequent travel, long distances to appointments [23], parking difficulties [38] and difficulties booking appointments [38].

Participants reported a lack of communication between care providers, whether this was between specialists [27, 38], staff on the same site [31, 38] or between GPs and the hospital [38]. Letters from specialists to GPs could be delayed or might fail to mention in-hospital occurrences that patients had considered significant [38]. Other qualitative studies reported that participants felt that care providers did not communicate with each other [23], which may explain reports of participants having to outline their medical history to different care providers repeatedly [27], and their perceptions that improving communication between staff would optimise care [31].

Some participants reported experiencing difficulties during a hospital stay recollecting important health information, such as the conditions they have and their impact [38]. Some used technology as aids [23, 36], while some older adults relied on family and other sources of support [33, 36]. The concept of a dedicated system coordinator to oversee care and assist in communications with other staff members was proposed by some participants [23, 31].

Participants reported preferring consistency between care providers and care units [27, 31], expressing that long-term relationships with care providers allow them to build trust [36]. One such example is the centralised support that local Aboriginal medical and community services have provided to some Aboriginal Australian participants [29]. Integrated services like these were found by one study to be desirable for people with MLTC, particularly highlighting a need for mental health and overall emotional support when being treated for a physical condition [31]. This is consistent with findings from Uga et al.'s [39] quantitative study, in which adults with chronic physical and mental conditions who attended an integrated clinic reported greater satisfaction with care than adults treated in separate internal medicine and psychiatry clinics. In addition, an investigation into the impact of an integrated, multidisciplinary and holistic approach to care reported a statistically significant increase in satisfaction with healthcare services (on a score from 1 [quite dissatisfied] to 4 [very satisfied]) when comparing ratings pre- and post-engagement among 39 people living with MLTC [30].

Patient engagement

The potential importance of patient engagement was highlighted by Kuluski, Tracy and Upshur [32] in that hospitalised Canadians sometimes considered not responding to the advice of care providers a ‘tipping point’ into poor health. Several dimensions of patient engagement were found in the included studies, including informal support as an enabling factor, confidence in staff and forms of collaboration.

Informal support

In some studies, engagement depended on the availability of informal support. For instance, Aboriginal Australian participants in one qualitative study reported having a strong network of family and friends who provide most of the care they need, and some felt that this had even helped avoid admissions to hospital [29]. Some hospitalised Canadian participants also felt that their health may not have worsened had they had access to more informal support. However, money was identified as a barrier to accessing this [32].

Adherence to care

While many participants reported being highly engaged in their care [33], (e.g., timely medication adherence and ensuring that they attended medical appointments [29]), levels of engagement varied. Some participants, for instance, reportedly did not understand the importance of attending medical appointments [29]. Regarding adherence to medication, some expressed struggling with taking multiple medicines due to financial burden, stress and confusion [27, 29], yet described pretending to their care providers that they were taking them as prescribed [27]. Also, when participants were not informed in advance that their usual dose of medication was being altered, this led to disagreements with staff and ultimately declining to engage in care [38].

Passivity

One form of patient engagement, noted by Wellard, Cox and Bhujoharry [37], was the tendency of patients with type 2 diabetes (n = 7) to become passive recipients of care during their hospital stay despite feeling confident and accomplished in self-managing their condition at home. The participants interpreted this as a form of collaboration, and while many quickly returned to wanting to self-manage, some maintained changes to their diabetes regimen post-discharge based on healthcare professionals' recommendations [37].

Level of confidence in staff

Some participants reported being unwilling to collaborate with staff, particularly nurses, with several expressing a lack of trust and confidence in health professionals' abilities [38]. In one study, patients with type 2 diabetes undergoing cardiac surgery (n = 7) generally perceived nurses as carers who implemented the wishes and requests of specialists, whom they perceived as being much better respected, even though most rarely acknowledged their diabetes [37]. However, nurses' help was appreciated by older adults in Backman et al.'s [23] study (n = 9) of care transitions.

Clinician–patient communication

Factors influencing perceptions of clinicians' explanations

During interviews in one study, people with complex chronic conditions identified better communication as one of the main aspects of care that would improve its quality [31].

Explanations by physicians represent one key aspect of communication in hospital care. While most participants in Schenker et al.'s [35] study of doctor–patient communication, which included a sample of adults with coronary heart disease and comorbidities (n = 703), rated doctors' explanations of conditions as good and 27% rated communication as poor. Compared with participants who reported good explanations, those who reported receiving poor explanations were more likely to be female, Asian and less likely to be Black [35]. Ratings of communication were not associated with histories of hypertension, diabetes and myocardial infarction, nor did they differ by measures of disease severity [35]. However, each standard deviation increase in depressive symptom score in adults with coronary heart disease was associated with 50% greater odds of reporting poor explanations of conditions [35].

Challenges to information provision

In other studies, some participants felt that care providers used too much medical jargon [36], leaving them feeling overloaded with information [37], which was reported to lead to distrust of medical staff [29, 36]. Conversely, some participants reported not receiving enough information, or, in the case of emergency surgery, not having enough time to absorb information [37], which may be reflected in some perceived gaps in their knowledge of the services they were receiving [29]. Participants expressed wanting to know what they can expect during their time in the hospital and at their next point of care to reduce stress and anxiety [31]. However, staff were perceived as often busy, which participants suggested could make them feel uncomfortable [31] and reluctant to ask questions [23, 27]. As a result, some reported finding information they desired elsewhere, such as from books or word of mouth from acquaintances who have gone through similar procedures [33].

Older people with MLTC who had undergone hip or knee joint replacements and who reported lacking the digital literacy to download information booklets were sometimes surprised by unanticipated outcomes, such as particular findings during surgery, side effects from medication or mobility aids they were given upon discharge [33]. This sometimes engendered disappointment and even regret that the surgery had ever taken place [33]. It was proposed that peer support in the form of current hospital patients could have helped people with complex chronic conditions know what to expect [31].

People living with complex chronic conditions in a Canadian study reported that sometimes the language capacities of care providers and understanding of the needs of patients from a variety of ethnic backgrounds represented a barrier to good communication [31]. Similarly, Aboriginal people in Australia expressed that information was often not explained to them by non-Aboriginal care providers in a way they could understand [29].

Responding to patient preferences

Some studies found that care providers did not instigate collaboration or encourage patients to share concerns [27, 31], which participants felt could have combatted stress [31] or health decline [32]. Neglect of patient preferences was also demonstrated in that some women experienced feeling humiliated when their preference for a same-gender provider during bathing was not respected [31]. In another study, it was reported that people with coronary heart disease who reported poor responsiveness to patient preferences were more likely to be white and less likely to be Black than those who reported good responsiveness to patient preferences [35].

Perceptions of attitudes towards patients

Tone and attitude also featured as important aspects of clinician–patient communication, as expressed by interview participants [36]. Inpatients wanted care providers to not only be good listeners, but also carry out their work enthusiastically [31]. Also important was a preference to be treated with respect and as individuals by understanding each patient's unique needs, including paying attention to non-medical aspects of their time at the hospital [31].

The length of in-patient stay was perceived to affect staff's attitude towards patients, with some participants reporting that the quality of care they received decreased over time, with, for example, long response times to their call bells becoming common [38]. Quick response times were highly valued by people with MLTC, but it was reported that people found it particularly difficult to gain the attention of staff during weekends and shift changes [31]. Some inpatients also felt that certain information was not reported in nurses' handovers over time as length of stay increased, and people with MLTC even felt ‘neglected’ and ‘gossiped about’, particularly when their stay lasted more than a week [38].

Experiences of discharge

According to acute stay participants (n = 12) in Williams' study [38], discharge planning did not include care of their comorbidities. Participants felt this may have been because they were frequent consumers of health services and expected to know what to do based on prior experience [38]. Participants in Carusone et al.'s study [26], who were living with HIV and comorbidities (n = 9), often perceived discharge meetings to have been rushed, while older adults (n = 9) in Backman et al.'s study [23] felt that information had not been imparted well and that they had not felt empowered. Veterans, too, gave the lowest PACIC scores in the Follow-Up/Coordination subscale [24]. The information recorded in the discharge plans also did not necessarily come to fruition, for example, HIV-positive participants in Carusone's study [26] felt that the informal support received post-discharge was not aligned with what had been previously reported, leading to isolation and loneliness.

While some participants had positive feelings about discharge because of reasons such as returning to their families [36], the ability to re-engage in vocational and recreational activities [31] and having more freedom [26], overall, study participants appeared to be anxious about discharge. More specifically, inpatients with complex chronic conditions were apprehensive of being ‘thrown out’ of the hospital when not ready ([31], p. 116). Older adults could fear abandonment by care providers while their symptoms persisted and reported feeling unprepared to handle any adverse reactions that might occur at home [36]. These anxieties were sometimes rooted in negative experiences of past discharge processes [36].

Older adults understood discharge as the end of their relationship with the hospital, though they did desire continued contact [36]. Participants reported a lack of ongoing follow-up from the hospital [36] and feeling concerned about the location, suitability and affordability of the next point of care [31]. Younger patients with complex chronic conditions were also often concerned about the impact of discharge on their spouse or partner [31]. In Sun et al.'s study [25], uncertainty about life post-discharge led to feelings of fear, depression, loneliness and despair.