‘Well, what are you going to do when you’re out there?’: a scoping review of successful hospital discharge for people with acquired disability and complex needs aged 18–65 years

Coordination and continuity of care was described as important throughout the entire discharge continuum including within the health system, between hospital and community supports, between medical and allied health providers, and post-discharge.

Coordination and continuity of care was particularly important during the transition from hospital to community. A randomised controlled trial (Qian et al. 2019) in two hospitals in Chongqing, China compared usual nursing care with transitional nursing care (i.e. predischarge health and stroke education, telephone calls from nurses and encouragement to keep diaries about rehabilitation and health exercises). The intervention group reported better subjective quality of life (SQOL) and greater satisfaction with nursing care than those in the usual nursing care group; however, the measures of SQOL were not well defined and the intervention did not improve readmission rates.

Qualitatively, the transition from hospital to home was identified as a stressful time where people sought consistency and a smooth transition; however, their experience was often the opposite (Conti et al. 2016; Abrahamson et al. 2017; Dwyer and Mulligan 2017). People reported chaotic transfers home with little information, limited supports in place and no time for close others to prepare. They experienced distress as a result of poorly planned transitions and in one case it led to a hospital readmission (Abrahamson et al. 2017). In contrast, having the same support workers from the time of discharge onwards reassured people and provided consistency in a continuously changing environment; ‘They found someone that would be able to assist me as a caregiver; she came and did some training in TR [transitional rehabilitation unit] and then when I came out she was available so that worked really well’ (person with SCI; Dwyer and Mulligan 2017).

Redfern et al. (2016) highlighted health professionals’ experiences of organising and coordinating support from multiple service providers in the community. Challenges with coordination of support were linked to the collaboration required between service providers to set up multiple supports on discharge: ‘so when you’re dealing with [health department], but within that Housing and Disability Services, there’s a communication between the three … one can’t happen without the other, because you can’t have suitable housing unless Disability feel that they’re going to be able to support this person, otherwise they’re not going to get this housing and vice versa’ (social worker; Redfern et al. 2016).

Discharge summaries were crucial for providing insight into the medical status of the person with disability and information for continuing rehabilitation in the community (Kable et al. 2018; Irgens et al. 2020). One study (Kable et al. 2018) evaluated the quality of discharge documentation for people with stroke returning home. It found limited evidence (20%) of documented patient/caregiver meetings with the multidisciplinary team to discuss plans or goals and that only 55% of patients were discharged with a 7-day supply of medication. Instructions for accessing therapies (e.g. frequency) were only provided for 74% of patients. Although most discharge summaries included information such as medications on discharge (100%), pathology results (94%) and a summary of medical treatment (96%), other important information was not routinely included such as allied health recommendations (42%), functional capacity assessment (58%) and support services required on discharge (59%). Surveyed close others (n = 12) reported that they all received a copy of the medical discharge summary, whereas less than 50% received information about any outpatient appointments or the ability of the person with disability to drive. It is noteworthy that only 12 (22%) of close others approached completed this survey.

Hospital health professionals reported that providing a handover to their community counterparts was paramount during discharge, with one highlighting the benefits of telephone calls in addition to the standard written discharge summaries: ‘[a phone conversation] is worth gold. It gives me the opportunity to transfer even more information [than a discharge summary]’ (hospital physiotherapist; Irgens et al. 2020).

Early connections between hospital health professionals and general practitioners (GPs) could set up a safe and satisfactory discharge where the GP is able to understand the person’s medical and allied health needs when they return to the community. One study (Abrahamson et al.2017) outlined how close others assumed that the GP would be informed and well positioned to provide coordination and support for the person post-discharge; however, some reported that GPs were not adequately informed about the person’s health and support needs and were unable to identify or coordinate the services they needed: ‘somebody that could just say: this is who you need to speak to. I don’t necessarily want someone to actually do it for me’ (spouse of person with ABI; Abrahamson et al. 2017).

The contrast between life in a hospital rehabilitation unit and life in the community became evident upon discharge: ‘Once you were out you were out. That was it you were gone … there was a big gap about how you were looked after in [inpatient rehabilitation] and now you’re out in the community and that’s what it looks like. If it’s not too good, well that’s become my problem’ (person with SCI; Dwyer and Mulligan 2017).

Starting with new post-discharge supports was difficult, especially when service providers had not received any handover from the hospital regarding an individual’s disability and support needs. Self-referrals to services were completed by some people with acquired disability in the community, without sufficient supports from the hospital or the service they were referring to: ‘I called up [service name] or whatever the hell it’s called, she’s like ‘oh you can just fill out the form by yourself and do it, it’s easy’ and I’m like ‘well, I’ve had a traumatic brain injury and I need assistance’’ (person with TBI; Fitts et al. 2019). Similarly, one participant’s wife was told by a nurse in the inpatient setting, ‘When you get him home, if you’re not happy, just refer him to the mental health unit’ (spouse of person with ABI; Abrahamson et al. 2017). In contrast, those whose services were set up on discharge reported satisfaction regarding the continuity of health professionals in the community: ‘I’ve been lucky I’ve had complete continuity of service [of physiotherapists and occupational therapists], I haven’t been spread around the different people’ (person with SCI; Dwyer and Mulligan 2017).

Borg et al. (2020) described a transitional rehabilitation service in Australia that acted as a conduit between the inpatient stay and return to community living for people with ABI. Participants received 2 weeks in-reach support from a multidisciplinary allied health team prior to discharge and for 10 weeks post discharge in the home. Therapies and case management services were provided throughout this time before a thorough handover was provided to people’s ongoing community supports. When compared to a historical cohort who received treatment as usual, a significant improvement was recorded in levels of anxiety, depression, and community participation. Although this study presents positive results in favour of the transitional service, the comparison cohort data was recorded approximately 10 years prior, thus variability in service delivery, resources available and environmental factors should be considered on interpretation of the results.

Chu et al. (2020) explored the effectiveness of a post-discharge rehabilitative program, focusing on activities of daily living, delivered by family members in rural China. Family members received training from inpatient nursing staff to deliver a stroke specific home-based rehabilitation program post hospital discharge. They also received follow up phone calls from the nursing team during the second, fourth and eighth week post-discharge. A greater improvement in physical recovery of those who participated in the discharge program was recorded 6 months post-discharge when compared to those in the control group (Chu et al. 2020).

In Malaysia, a panel of stroke experts developed a primary-care-led discharge pathway and post-discharge screening tools to improve coordination of care post-discharge (Abdul Aziz et al. 2017). Two distinct cohorts were identified: those who could be managed at primary healthcare facilities in a shared care approach, and those who required specialist outpatient clinics in a tertiary health centre. Those requiring specialist outpatient input included people under 40 years of age and those with uncontrolled stroke risk factors. Screening tools and recommendations were developed to improve continuity of care in a developing country; however, these were not evaluated.

The training of close others and support workers in the inpatient setting prior to discharge was highly valued by people with acquired disability and close others. Caregiver training fostered a sense of predictability and mastery during the discharge process and highlighted necessary areas for development of skills: ‘I agree with the care training because we are supposed to guarantee safety to our relative once discharged home’ (spouse of person with SCI; Conti et al. 2016). When this training was not provided, people described this as a gap in their preparedness for discharge: ‘I would like the homecare staff provided by the National Health Service to come to the SCU in order to be trained. In this way there would be fewer complications and problems’ (spouse of person with SCI; Conti et al. 2016).

Familiarity with support workers and having confidence that support workers knew how to provide appropriate support reduced uncertainty and helped people adjust to their acquired disability: ‘The difference that it makes for me to have the same people who know me, know my house, what I need, and can do things, is the difference between me waking up in the morning and not feeling like this disability is a big thing’ (person with SCI; Dwyer and Mulligan 2017). The breadth and quality of caregiver training was important. For example, family members in the Conti et al. (2016) study identified managing challenging behaviours and maintaining boundaries as gaps in their training: ‘Sometimes we do not have enough answers to what they [SCI survivors] have asked us or we do not know how to treat or cope with some behaviours’ (niece of person with SCI; Conti et al. 2016).

Home visits were a valuable opportunity to learn about life post-discharge and address potential issues prior to discharge (New 2015; Abrahamson et al. 2017). Although valued, some close others felt that home visits did not provide enough experience or education to prepare them for life after discharge: ‘He had a couple of weekend visits, but that still wasn’t somehow really enough to prepare us’ (spouse of person with ABI; Abrahamson et al. 2017). One study reported that waiting for a health professional to be available for a home visit led to discharge delays (New 2015).

People with acquired disability and close others frequently felt ill-prepared for the enduring impact of living with disability. Biester et al. (2016) surveyed people with TBI and close others of people with TBI to gauge their satisfaction with the information they were given about the consequences of TBI. Overall, only 30.1 and 30.0% of people with TBI and close others, respectively, felt that they were provided adequate information about the consequences of TBI. Only 41.1% of people with TBI reported being told about the possible cognitive effects of TBI, and what these might mean for post-discharge life, despite 71% undergoing some form of cognitive assessment. Approximately half (55.2%) reported being provided feedback from cognitive assessments, with only 43.8% reporting understanding what these results meant. Forty-six percent of people with TBI reported being told of possible psychological sequalae of brain injury such as irritability, poor frustration tolerance, depression and anxiety. Similar patterns emerged for close others: 27.3% reported being satisfied with the information provided about possible cognitive effects of TBI and 52% reported having the results of cognitive assessment explained in a way that was understandable. Only 57.3% of close others reported being told that irritability and frustration were a possible consequence of TBI and 60% reported being told about anxiety and depression after TBI.

Moving home was a highly anticipated goal for people with acquired disability and close others. People with acquired disability often thought that life would return to a sense of normality when they were back at home; however, returning home sometimes represented the beginning of a new understanding of living with disability: ‘I thought it was going to be a lot easier … I thought I was back to normal, yes. And I was nowhere near’ (person with ABI; Abrahamson et al. 2017). Some people with acquired disability said that they would have liked support to be more fully prepared for life after discharge: ‘Nobody prepared me for home. Nobody said, ‘Well, what are you going to do when you get there?’ … I just needed a bit more guidance on how it was going to be’ (person with ABI; Abrahamson et al. 2017).

Psychological distress emerged as an important unmet need across a number of studies (Abrahamson et al. 2017; Dwyer and Mulligan 2017; Fitts et al. 2019), sometimes with serious outcomes: ‘I actually took an overdose … because I didn’t think that it was worth going on … because everything that I wanted was taken away: my work, my driving, my … normality, if you like’ (person with ABI; Abrahamson et al. 2017). Some close others felt that there was insufficient psychological support: ‘I also think that greater support should be provided for us psychologically’ (niece of person with SCI; Conti et al. 2016). Some close others felt unsupported by health providers and informal support networks when they were taking full responsibility for supporting the person with disability at home: ‘I feel abandoned by everybody, not only by institutions but also friends’ (spouse of person with SCI; Conti et al. 2016).

It was important that discharge planning encompassed a comprehensive plan for where a person could live in the long term if they could not return to their previous home. Housing emerged across some studies (Redfern et al. 2016; Houston et al. 2020) as a barrier to discharge. Redfern et al. (2016) highlighted the complexities of the health, disability and housing interface, whereby lengthy assessment times, allocation of suitable funding and lack of housing options resulted in delays to discharge that could be compounded by hospital acquired infections and iatrogenic injuries acquired while awaiting assessments and funding. Fitts et al. (2019) highlighted the consequences of secure housing not being obtained prior to discharge, with one person being unaware of this until after their discharge: ‘I want an accommodation of my own, see … And it’s going from bad to worse, getting to worse. Like, I’ve been sleeping in the parks, couple of nights’ (person with TBI; Fitts et al. 2019).

For some people with acquired disability, successful discharge was contingent on home modifications, equipment and disability supports. Quantitative data revealed that assistive technology and equipment (New 2015; Houston et al. 2020), home modifications (New 2015; Houston et al. 2020) and disability supports (including Positive Behaviour Support) were the most common reasons for discharge delay. Redfern et al. (2016) cited uncertainty around prognosis as a contributing factor to delays in planning for community housing and supports. Houston et al. (2020) identified that funding applications for people with ABI were often not instigated until a median of 72 days into their admission. It was then a median of 77 days until funding was approved. In contrast, similar funding applications were initiated for people with SCI a median of 35 days into admission.

Delays with home modifications meant that people often remained hospital inpatients or spent a long time in interim discharge destinations before returning home. One person with SCI had been living in a motel for 14 months: ‘It’s been 14 months now I guess, so long … just have to be patient … as they say no place like home, look forward to going home you know, do my thing’ (person with SCI; Dwyer and Mulligan 2017). One person with acquired disability realised that his home modifications were not suitable after they had been installed. In this case, space was lost to accommodate an accessible bathroom and his house became too small to use a powered wheelchair (Dwyer and Mulligan 2017). Another person had a ramp built that he could use to exit the house, but not to re-enter: ‘But I can’t get back in with my wheelchair. Once I go out, I can’t get back up the ramp’ (person with stroke; Hodson et al. 2016).

Prior to discharge, some people worried that they would be discharged without supports for unidentified issues or unmet needs, including continence, pain management, concurrent injuries, and outpatient appointments (Abrahamson et al. 2017). Barriers such as lack of transportation, lack of phone credit or financial difficulties sometimes impacted peoples’ ability to engage with community allied health services. People with acquired disability who were Aboriginal and/or Torres Strait Islander and lived in regional and remote areas of Northern Australia reported that they were better able to engage in rehabilitation and with support providers if transport was available: ‘Oh like, if I need to go to the hospital, they’ll pick me up and take me there. And if I need medication, they supply it, like they can get it for me’ (person with TBI; Fitts et al. 2019). For others in a different study, the cost of therapies on top of day-to-day expenses was identified as a barrier to engaging with support: ‘The speech pathologist [said] I had to pay $110 for a disc … but you know then you’ve got to pay $53 a week which is OK … I’ve got to budget and now I’ve got to look at getting cleaners in and I’ve got to get the money’ (person with ABI; Hodson et al. 2016).

In the community, novel issues arose which neither people with acquired disability nor close others knew how to solve. Kable et al. (2018) found that only 37% of people with stroke were provided a formal contingency plan to prepare for any post discharge complications. Dwyer and Mulligan (2017) reported that people with acquired disability and close others did not have enough information to be able to navigate services on discharge: ‘I don’t think there was enough introductions of the sorts of people that you would be dealing with you once you got home. I was totally lost, I remember having a bowel accident one night in the motel not knowing who I could get to help me, how to go about it and I remember having to get the moteliers in to help’ (person with SCI; Dwyer and Mulligan 2017).

In the community, the rehabilitation centre remained an important reference for close others, as it could provide support and resources post discharge, especially when they did not know who to contact (Conti et al. 2016). Some people with acquired disability reported not knowing what support was available to them: ‘I just found out yesterday that I could have requested an annual check-up of my chair that probably would have identified a lot of these problems. I could’ve asked for something six months ago but I had no idea at that time’ (person with SCI; Dwyer and Mulligan 2017).

Lack of communication from health teams was experienced by people with acquired disability from their admission throughout the trajectory of their hospitalisation and discharge: ‘There was no communication. No. From day one … I was told nothing’ (person with ABI; Abrahamson et al. 2017). For some people, lack of communication was perceived as a form of ableism and institutional racism. In Fitts et al. (2019), Aboriginal and/or Torres Strait Islander people were reportedly not told the details of their injuries, as doctors assumed that they would not understand the information provided. This experience resulted in a self-discharge for one person: ‘[The doctor] knew that I wouldn’t understand, or I wouldn’t get it what he was telling me. I thought well if no one is going to tell me that I’m supposed to be here I might as well go home’ (person with ABI; Fitts et al. 2019).

Hersh and Armstrong (2021) highlighted the inappropriate use of medical terminology when communicating with a person with aphasia. This rendered the information inaccessible to the person and resulted in a missed opportunity for effective communication. In the community, some people reported that the roles, responsibilities and boundaries of community health providers were not explained clearly and suggested the use of a familiar structure like a ‘family tree’ to help the person better understand the system (Dwyer and Mulligan 2017).

Close others also often felt dissatisfied with communication across the trajectory of hospitalisation and discharge (Biester et al. 2016; Conti et al. 2016; Abrahamson et al. 2017; Fitts et al. 2019; Hersh and Armstrong 2021). A lack of communication was experienced by many close others regarding the diagnosis of the person with disability: ‘A definite step forward should be made regarding the two basic steps of hospitalisation, that is, diagnosis communication and discharge management. I think that communication aspects should be more implemented by all professionals’ (spouse of person with ABI; Conti et al. 2016). Others reported disorganised communication, which came in the form of multiple calls a day from different hospital-based health professionals: ‘Every day … they call me … they are so unorganised’ (wife of person with ABI; Abrahamson et al. 2017). This resulted in confusion for close others due to multiple conflicting narratives (Abrahamson et al. 2017; Hersh and Armstrong 2021). The theme of a lack of communication continued post discharge: ‘Four weeks after discharge and we haven’t heard a dickey bird’ (spouse of person with ABI; Abrahamson et al. 2017).