To ensure that neurorehabilitation, or any other aspect of service provision, is effectively targeted and contributes to positive outcomes for clients in their life contexts, the clinician must step back and appreciate the wider picture of what occurs in the lives of individuals and their families after brain injury. Health professionals may, at times, feel that they have limited control over the organisational context and practical constraints (e.g. funding mechanisms, staffing levels, resource availability) within which they are working. Indeed, service evaluation, long-term research and government lobbying is often required to drive positive change in service provision models, availability and quality. Nonetheless, the individual clinician usually has some control over how he or she practices – what is emphasised and prioritised in encounters with the client and family, which clinical skills are developed and refined, who the client will be referred to after this clinical service has ended, and the communication that will occur with the client and family, as well as with subsequent service providers.

Therapy services are typically categorised according to the amount of time post-injury, the service purpose (acute care, rehabilitation, long-term community-based services, residential care) or a specific client age range (children and youth, adults, older people). Therefore, each clinician will be involved for only part of the client’s story. Smoothing the pathway from one phase of service provision to the next requires a broader appreciation of the client’s rehabilitation journey outside the clinician’s own immediate service context.

To gain this broader perspective, the clinician can consider what has been learned from research into the experiences of clients and caregivers post-injury and their perceived long-term service needs. Although a variety of different factors come into play when working with clients with different diagnoses, research into chronic disability due to brain injury suggests some common themes across stroke, traumatic brain injury (TBI) and cerebral palsy (CP). Awareness of these ‘big picture’ themes can help clinicians develop practice habits and skills that support the client’s quality of life and promote positive long-term outcomes. Research findings suggest that the following themes are important in guiding service provision.

1.2.1 What are the needs?

It is clear that quality acute care supports better outcomes for people with acquired brain injury (ABI). This is illustrated by the variation among stroke outcomes in different European countries depending on the resources devoted to the acute phase of treatment [1]. It has further been suggested that, in addition to advances in brain stimulation techniques and pharmacological interventions, early provision of intense interdisciplinary neurorehabilitation contributes substantially to better stroke outcomes [2]. In relation to children with CP, substantial progress has been made over the past two decades in developing coordinated interdisciplinary rehabilitation services [3] and research into related interventions has focused on provision of services early in life and throughout childhood [4].

Despite a concentration of resources within the acute and early rehabilitation phases of intervention, a growing body of research across different diagnostic groups indicates that people with brain injury continue to have therapy needs on a long-term basis, often for the duration of their lifetimes [5]. In a study of 60 people with TBI who were interviewed one year after their injuries, 38% identified significant restrictions to their lifestyle and work capacity and 15% were unable to care for themselves [6]. In a UK study of 1251 people ranging from one to five years post-stroke, approximately half of the participants reported a reduction in work activities and two thirds participated in fewer leisure pursuits than before their strokes [7]. In a comparison of the quality of life between people with recent (1–5 years) and extended (more than 5 years) brain injuries, the extended group reported more difficulties with instrumental activities of daily living, such as household tasks and community activities, indicating the need for continuous community living skills training [8].

As people with CP live longer, there are indications that atypical tone increases with age and secondary conditions, such as contractures and degenerative arthritis, are having lifetime effects [9]. In a review of long-term outcomes for adults with CP, Kembhavi et al. [4] identified that ambulation skills commonly deteriorated in adulthood and that joint deformities occurred regardless of mobility status or severity of the condition. Co-morbid diagnoses, such as stroke, multiple sclerosis and Parkinson disease, are not uncommon in adults with CP [9]. The recognition of these long-term issues within this client group has led to increased research into the impact of pain and fatigue on their participation in daily life activities [4].

In addition to these ongoing physical and rehabilitation needs, it is clear that emotional and psychosocial issues continue to be evident over time across all diagnostic groups. In a large UK study, one third of participants who had had a stroke between one and five years previously reported emotional problems [7]. Similarly, in a sample of French participants, two thirds of whom were more than one year post-stroke, depression was more common than in matched controls, and levels of both depression and difficulties in social interaction increased over time post-stroke [10]. Comparable difficulties were found in a study of people with TBI [11]. For people with stroke, emotional and social issues were more marked for those who had hemiplegia or were unemployed [10]. As such needs have become more recognised, it has become evident that promoting quality of life among people with ABI requires ongoing support of emotional and social role functioning, daily life activities and participation in enjoyable activities [12]. A similar breadth of needs can be identified for people with CP. Studies suggest that adults with CP commonly live isolated lives [13] and that those aged over 40 have been assessed to be lonelier than other adults [14]. Mental health issues, such as depression, are not uncommon in this population [9]. At a consultative clinic for adults with CP in New South Wales, Australia, while the main areas of need are neurological and musculoskeletal, depression and anxiety are also being identified [3].

Collectively, this research suggests that the service needs of people with brain injury change and increase over time and that services need to be responsive to these changes [5, 15]. It is further suggested that the degree to which these service and support needs are met will significantly impact clients’ long term quality of life, psychological adjustment and participation in meaningful life roles [16–18]. The importance of ongoing service provision for adults with TBI is highlighted by the finding from one study that, for some people, the hope of continuous improvement over time played a critical role in developing a “new self” [6] (p.414). For example, one participant commented that “I’ll keep improving, with hard work of course, for the next…10 years, or 20 years, no matter what…” (p.413).

1.2.2 Are the needs being met?

Despite increasing acknowledgement of long-term service needs, current service availability and access is falling short of the expectations of clients and families. Half of the participants in a UK study of people post-stroke reported unmet needs in relation to clinical services and information provision [7], while an Australian survey of carers of adults with TBI found that only 33% reported access to therapy services following hospital discharge [5]. In another study focusing on the transition of people with ABI from hospital to home, the services that were provided (even during inpatient rehabilitation) were considered insufficient in terms of timing, intensity and duration [15]. Adults with chronic lifelong disabilities have reported difficulty accessing services in the adult health system equivalent to those available when they were children [19]; similarly, young people with CP experience a marked reduction in rehabilitation services once they finish school [3]. People living in rural areas and those with non-compensable injuries also face restrictions to service access in some countries [15].

While limited resources are likely to be partly to blame for unmet service needs, some studies indicate that the attitudes of service providers were unhelpful and they reduced access to further services. In a Swedish study, people with TBI and their relatives reported feeling avoided and misjudged by health service personnel [20]. They relayed their experiences of professionals evading their questions about further service provision and making decisions about their care without consulting them or allowing their families to have meaningful input. Dennis [21] provides a vivid account of similar experiences after her mother had a stroke and service providers decided that rehabilitation was not warranted due to the severity of the stroke’s effects. Dennis perceived that once this decision is made by health professionals, care and therapy ceases, causing further negative impact on the quality of life of people with more severe disabilities. Adults with CP have also reported that, while their experience of dealing with health professionals was generally positive, barriers to accessing health care included lack of interest and time provided to them by some health professionals [13] and a lack of specialist knowledge and professional training [4, 22].

It may be difficult for individual clinicians to effect significant organisation- or health care system-wide changes to service access. However, the research outcomes described here can be used constructively to develop one’s own practice style and principles, focusing in particular on developing a client-centred approach to service provision and a personal attitude of compassion.

1.3.1 How is transition experienced?

The process of transitioning from one service context or stage to another is another theme identified as important by clients and caregivers. Research into the transition from hospital to home or from inpatient to outpatient rehabilitation services suggests that this process often does not occur smoothly. For example, in an Australian study, a quarter of carers of people with TBI reported that they received inadequate information about services available after discharge. Few carers were accessing formal financial, travel or accommodation supports and only one third of clients were reportedly accessing ongoing therapy [5]. In a further study of individuals returning home after an ABI, participants reported that organising post-discharge services was a difficult process, mired in bureaucracy and inflexible or complex eligibility criteria [15]. In the latter study, case management services were not in place before or immediately after discharge, and clients experienced delays in commencing community-based services after returning home. As a result of this lack of coordination and planning, levels of caregiver satisfaction tend to drop substantially between inpatient and outpatient services [5, 23]. It has been suggested that reduced satisfaction at this point in time might also be due to a slowing of the spontaneous recovery experienced by the person with brain injury [5]. However, the anxiety that this phase creates is only likely to be exacerbated by a simultaneous reduction in services that could play a role in assisting clients to come to terms with their current status and future potential.