Rehabilitation models that support transitions from hospital to home for people with acquired brain injury (ABI): a scoping review

Most of the models that we identified through this scoping review, were organized in a hospital. However, some of the interdisciplinary team models were organized in primary care. Grimsmo et al. [104] argue that the feasibility of disease-specific clinical pathways in primary care is limited based on the low prevalence of patients with certain diagnoses in the context of primary care. This may call for services that are organized into specialist health care services, such as hospitals or corresponding enterprises, in the early phase of discharge. The feasibility of such models will, however, be challenged in rural areas with large geographical distances and less robust health care services. This may require rehabilitation efforts by the primary health care services in the communities.

There is evidence to support all five models identified in this scoping review. Early supported discharge (ESD) teams have been found to be successful in providing home-based rehabilitation to people with stroke [31, 105]. Such teams have been found to reduce the odds of death and dependency [21, 106], reduce the length of hospital stay [21, 107], result in faster improvement of overall disability [86], improved ADL ability [60], and a higher level of satisfaction with services compared to ordinary rehabilitation [21, 106, 108]. Qualitative studies have concluded that provision from an early supported discharge team was experienced as meaningful and adequate [77] and could reduce patients’ insecurity [7]. Although the benefits of ESD teams are well-documented in the field of stroke research, we only found one study that described ESD teams for the more general patient group of ABI [97]. Stroke is one of the most frequent diagnoses categorized as ABI [1] and represents the majority of research objects in our study (Table 3). Hence, there is a need to explore if services that are beneficial for stroke patients can be adapted to the more generalized group of patients with ABI. Models that are based on key-coordinator or case manager services are recommended by the ABIKUS Evidence Based Recommendations for Rehabilitation of Moderate to Severe Acquired Brain Injury [109]. Simpson et al. [110] argue that the complexity of the needs of people with TBI and their families requires both coordination among available services and support in managing the stress associated with unmet needs. Despite this, a systematic review [111] found limited evidence for case management services after brain injury. However, the lack of consensus of key coordinator roles and the diverse contexts of services, complicate any attempt to provide evidence. One must assume that the effects will vary based on the additional services there are to coordinate.

Services that mainly based their initiatives on training nonprofessionals, such as family caregivers or lay people, are in line with strategies emphasizing low-cost services and the economic sustainability of services. However, we have not found evidence to recommend such services compared to services delivered by professional rehabilitation staff.

Team models that are resource demanding were frequently represented in the Western countries, which tend to have well-developed health care services [112]. On the other hand, services that were delivered by nonprofessionals or self-management programs were mostly conducted in countries such as India [56, 61], China [68, 82], Malaysia [43, 59], and Thailand, but also in Australia [75], and the USA [87, 101]. This may indicate a socioeconomic inequity in service delivery from a global perspective, although it could also indicate that varied geographical dispersal or be related to ethnical and cultural factors and needs further investigation.

Although the studies included in this review recommend predischarge planning [72], it is unresolved whether such planning should be carried out as meetings at the hospitals or arranged as home visits that include assessment and training in the home environment. The evidence is diverse, and there is a paucity of applicable research on case management [111]. Investigations of predischarge occupational therapy found no difference in outcomes for people who do and do not receive predischarge home visits as part of their predischarge planning [113, 114]. Some of the predischarge services that involved a multidisciplinary team that carried out assessments and training in the patients’ home [52, 73], have similar features to the multidisciplinary rehabilitation teams described earlier. Therefore, we cannot draw a clear demarcation between the described service models, and one should consider the varied models as components of a continuous pathway.

Several of the included studies in this review involved combinations of the models that we identified. For example, the ABI TRS study from Australia [93], involves a combination of predischarge planning at the hospital and a multidisciplinary rehabilitation team in the home environment coordinated by a designated case manager. Some of the studies that describe ESD teams, also include a description of predischarge planning and coordination as part of the service. Chouliara et al. [31] emphasize the importance of considering such teams as “events in systems” and not as isolated from the broader organizational context. Both Simpson et al. [110] and Fisher et al. [46] call for services that combine case managers and multidisciplinary teams.

The described initiatives emphasized goal orientation and person/family centrality. Initiatives were described as targeting physical function, such as gait-related mobility, positioning, transferability, activities of daily life-function, and task-specific activities were commonly described in the included studies. Most of the included studies also emphasized the multidisciplinary aspect of rehabilitation; hence, they indicated that coordination and collaboration were central for the model. All these aspects are in line with how the WHO [115] defines central beliefs that are fundamental for rehabilitation:

Functioning is central to health and well-being; it is integral to how a person is included and participates in meaningful activities and life roles.

Rehabilitation is person/family-centered; it is oriented around the specific needs and goals of the person and their family.

Rehabilitation is collaborative; it requires consultation with, and the active involvement of, the person and their family.

Descriptions of which theoretical frameworks that supported the assessments and initiatives were sparse in the included studies. However, motor learning and activating physiotherapy were described as fundamental theoretical frameworks to support initiatives that targeted physical function. These theories are generally limited to interventions targeting an individual level and omit aspects that include a broader and comprehensive perspective that involve social integration and societal participation. The International Classification of Functioning, Disability and Health (ICF) model was described by Borg et al. [93] to serve as a fundament for assessments in their rehabilitation model. The ICF framework comprises the components of body functions and structures, activities, and participation [116], and is a worldwide accepted model providing a universal language for the description and classification of functioning. It is described by several as an appropriate framework in assessments, in addition to the development of rehabilitation strategies for people with complex needs [117‐121].

In addition to physical functioning, problem-solving techniques, and self-management strategies, social activities, cognition, communication, and psycho-emotional status were also described as core features in the studies. Common issues for people suffering from ABI are psychological issues, such as depression, reduced attention and concentration, loss of memory or emotional issues [122, 123], and the literature recommends cognitive and behavior training as a central feature in rehabilitation for people with ABI [11]. However, the included studies in this scoping review do not describe any theoretical foundation for such initiatives. How such initiatives should be carried out in practice is clearly underreported in the research literature.

A family-centered perspective, where services aimed to support family members and next of kin, was identified in several of the included studies [59, 63, 68, 78, 80, 82, 83, 86, 90]. These studies focused on identifying and addressing carers’ needs and supporting them in their needs. Tramonti et al. [124] found the caregiver burden for family members of patients with ABI to exceed the cut-off score for possible burn-out.

In the included studies in this review, the family members’ role was described differently within the varied rehabilitation models. For example, in the self-management programs, family members were described to withhold their own emotional and practical needs, hence the rehabilitation models aimed to support them in coping with the new situation [59, 68, 82]. Contrary, in the family-led rehabilitation models, family members were primarily described to withhold a care-provider role, to support the patient with ABI [56, 61, 75], and descriptions on how to support their own needs were lacking.

Family members are potentially an important resource in the support of patients with ABI, and there is a need to explore how identification and support of family members’ needs can be an integrated part of a rehabilitation model.

The variety of different service models may indicate a lack of consensus on best practices for this population in the discharge phase of the rehabilitation trajectory. However, it may also be an expression of the need for contextual flexibility, in line with the metaphor of “one size does not fit all”. Despite the sparsely described contextual features in the studies, we did see some patterns that we will subsequently discuss.

The more complex and resource-intensive interprofessional teams were mostly described in literature published on studies from Scandinavia, the UK, Canada, and Australia. In one study from Portugal [78], researchers described a multidisciplinary team model, inspired by ESD-teams in Denmark, which they adjusted to the context of Portuguese health care services. Due to economic matters, they emphasized nonprofessional aides whom which they trained to provide rehabilitation initiatives instead of professional rehabilitation staff. This indicates that multidisciplinary teams are resource demanding, which may be the reason why they are more common in countries with robust welfare services.

Self-management services and services provided by trained family caregivers or lay health workers shared the common feature that they were depending on the labor force from other than health professionals, striving for economic sustainability. The identified studies that described such services were conducted in China, India, Malaysia, Thailand, Australia, and for the Latin American population in California, USA [35, 43, 56, 59, 61, 68, 75, 82, 84, 92]. Although we have no records of the cost of the services described in this study, it is noticeable that there are some geographical features that tend toward a pattern of low-cost services in Asian countries, and more resource demanding services in western countries. This may indicate a socioeconomic inequality in access to services, which has also been described earlier [125].

Some of the included studies indicate that there is a need to adjust services regarding population density, and that services delivered in rural areas require certain adjustments [30, 66, 67, 104]. Rural living has been demonstrated to affect citizens’ overall health status, and disparities in health between rural and urban individuals are an important global issue [67]. Individuals in rural settings often have poorer access to health care [126, 127], and poststroke rehabilitation services are a particular example [67]. However, further studies are needed to describe specific adjustments and adaptations to rural areas. Only one of the included studies highlighted cultural adjustments as central [92].

To utilize service research in a wide range of contexts, we encourage researchers to strive for more robust descriptions of geographical, demographical, and cultural contexts in future health care service research.