Personal experiences of appropriate access to post-acute care services in acquired brain injury: a scoping review

Synthesis of this literature illustrates the importance of the relationship between the service provider and user when conceptualising appropriate access from the perspectives of people with brain injury. Features of these services and providers such as expert knowledge and their interpersonal qualities, adaptability and collaborative partnerships with providers have emerged as important factors when understanding appropriate access for brain injury. Synthesis of the themes are outlined below.

Provider Expertise. First, review of the studies suggests that service provider knowledge is an important feature of the access experience for people with brain injury. These studies illustrate that service providers with specialised knowledge of brain injury, such as neuropsychologists, are highly valued (Braaf et al., 2019; Brighton, Traynor, Moxham & Curtis, 2013; Dams-O’Connor, Landau, Hoffman & De Lore, 2018; Solovieva & Walls, 2014). Specialised knowledge increased the confidence that service users had in the providers’ expertise, and validation from providers about personal concerns being known consequences of brain injuries was valued (Lexell, Alkhed & Olsson, 2013; Snell, Martin, Surgenor, Siegert & Hay-Smith, 2017). Service users were also likely to have their needs met, and therefore have a good fit of services, when their providers had the brain injury-specific expertise.

Braaf et al. (2019) found that specialised knowledge of severe TBI was highly valued and resulted in more perceived productive interactions by patients with their health and rehabilitation providers. Not only was this expertise valued, people with TBI also emphasised that a lack of brain injury-specific knowledge was problematic. In circumstances where providers lacked expert knowledge, service users were likely to perceive that their issues were not acknowledged or addressed (Braaf et al., 2019). This emphasis on specific expertise also emerged in populations within brain injury, such as those with alcohol-related brain injury who valued knowledge specific to their concerns (Brighton et al., 2013).

Results of the reviewed studies further support this finding that a lack of specialised brain injury-specific expertise is problematic for people with ABI (Eliacin, Fortney, Rattray & Kean, 2018; Harrison et al., 2017; Brauer, Hay & Francisco, 2011). When considering appropriate access for people with ABI, results suggested that lack of access to specialised, age appropriate health services in the community was a significant issue (Eliacin et al., 2018). The unwillingness of general and specialty care providers to learn more about ABI was also perceived as highly problematic (Dams-O’Connor et al., 2018). This work suggests that providers with specialised or injury-specific knowledge are a valued aspect of appropriate access. Specifically, specialised knowledge was important when it came to people with ABI feeling that their needs were being acknowledged or addressed.

Interpersonal Qualities. Interpersonal qualities of providers were an important aspect of appropriate access from service users’ perspectives. This specifically included qualities such as empathy, sensitivity, honesty, and respect (Braaf et al., 2019; Dwyer, Heary, Ward & MacNeela, 2019; Hooson, Coetzer, Stew & Moore, 2013; Kivunja et al., 2018; Lefebvre & Levert, 2012). Gill, Wall and Simpson (2012) found that participants valued the trustworthiness and reliability of staff, which impacted on a positive relationship between the service user and provider. The empathetic nature of the provider was important to service users (Hooson et al., 2013; Kivunja et al., 2018; Lefebvre & Levert, 2012). When providers demonstrated care and understanding of the service users concerns, the service users felt that they were able direct the sessions based on their needs (Braaf et al., 2019). Findings of another study outlined that that good communication was the most valued skill of providers to those with ABI, particularly good communication involving listening and explaining medical terms (Dams-O’Connor et al., 2018).

In contrast, a lack of interpersonal skills was found to be problematic. Chamberlain (2006) reported that concerns about professionals treating them with distrust, and a lack of empathy when concerning ‘invisible symptoms’, such as headaches. Another study found that distrust exhibited by providers regarding symptoms resulted in service users feeling their integrity and self-esteem was impacted (Snell et al., 2017). While the ability of a provider to ensure the service user feels acknowledged in itself is important, the focus placed on trust, and acknowledging invisible symptoms that emerges in the literature seems to intersect with provider expertise. Knowledge and the validation and acknowledgement of brain injury-specific symptoms appears critical.

Sensitivity emerged as a valued quality, particularly when delivering bad news (Dwyer et al., 2019). Review of the studies indicate that this lack of sensitivity on part of the health professionals often resulted in the diminishing of individuals hope (Chamberlain, 2006). The importance of qualities which foster a good relationship between the service user and provider points to the importance of an ongoing relationship with the provider (Braaf et al., 2019; Brauer et al., 2011; Rusconi & Turner-Stokes, 2003; Simpson, Mohr & Redman, 2000; Winkler, Farnworth, Sloan & Brown, 2011). The results of the reviewed studies indicate that service users valued ongoing treatment with a single provider that they had developed a relationship with, and therefore understood their history and progress. Likewise, lack of an ongoing relationship with a provider emerged as challenging. Findings of one study outlined that high levels of changeover in staff resulted in the inability to implement recommended rehabilitation advice, prescribed to reduce pain in an individual with severe ABI (Winkler et al., 2011). The importance of provider interpersonal skills are highlighted by resultant impacts to the service user. A lack of trust and knowledge of their previous history may result in recommendations not being adhered to, or service users not feeling enabled to ask questions which can best facilitate their recovery.

Synthesis of the literature suggests that the impact of provider interpersonal qualities on service user experience can be exacerbated in people from different cultures, service users already at more risk of experiencing social isolation and stigma (Mbakile-Mahlanza, Manderson & Ponsford, 2015; Simpson et al., 2000). Simpson et al. (2000) conducted a study in Australia interviewing people with TBI and their families from Italian, Lebanese and Vietnamese backgrounds. Participants reported a lack of sensitivity on behalf of the providers, and some valued interpersonal qualities such as friendliness or attentiveness more so than providers experience or expertise. This points to the importance of cultural competency of providers when defining appropriateness.

Partnership. The third prevalent theme relating to characteristics of providers was the partnership between the service user and provider. Importantly, the partnership was integral to the experience of choice and control within the interaction and whether there was a sense of appropriateness. This included the ability of the provider to foster a relationship that emphasised collaborative care with the service user being actively involved in decisions and goals of their care. Partnership emerged as a key factor in facilitating return to work. The reviewed studies emphasised that communication and transparency between the provider, the service user and the employer created a partnership which was crucial for successful return to work (Matérne, Lundqvist & Strandberg, 2017; Soeker, Van Rensberg & Travill, 2012). This suggests that good partnerships can assist in the management of challenges across the continuum.

Gill et al. (2012) found that service users with ABI valued when providers offered suggestions based on the service users interests and gave the service user the choice of whether to engage with this recommendation. The service users felt their autonomy was valued by staff who utilised these tactics and reported a positive, collaborative relationship with them as a result. This is corroborated by other reviewed literature suggesting that the ability of the staff to facilitate autonomy in service users with ABI was viewed as a positive quality (Lefebvre, Pelchat, Swaine, Gelinas & Levert, 2005; Martin, Levack & Sinnott, 2015; Soeker et al., 2012).

In contrast, providers who take an authoritative approach can contribute to a poor access experience. Abrahamson et al. (2017) reported that service users felt frustrated as they were unsupported in their attempts to take control of their rehabilitation. This was reflected in the mismatch between the goal focus of professionals in contrast to service users. For example, professionals often focusing on short term goals, whilst service users desired to focus on the long-term goals. This issue with lack of control is evidenced by mismatched expectations between service users and providers specifically the acceptable distances to travel for therapies and reasonable lengths of time (Copley et al., 2013). Conneeley (2012) reported that people with ABI feel that gains in their cognitive awareness over time were not reflected in greater responsibility or autonomy over rehabilitation decisions. This result is supported by Maratos et al. (2016) findings that people with brain injury feel they can be constrained by the clinicians’ expectations as opposed to their abilities. Research has indicated that some people with ABI experienced providers being ‘overprotective’ and ‘clingy’ and treating them as ‘disabled’, which would result in the service user feeling disempowered (Glintborg, Thomsen & Hansen, 2018; Strandberg, 2009). Jumisko, Lexell and Soderberg (2007) found that service users reported that providers would be deliberately evasive when asked for additional information about their treatment, prognosis or asked for more rehabilitation. This resulted in a perceived poor relationship between the service user and provider.

This literature supports the need for patient directed care, when it comes to what is appropriate. Those with an ABI are often thrust into a role where decisions are being made for them not by them early on, due to injury and health professionals attitudes (Lefebvre et al., 2005). The literature suggests that service users are more likely to engage actively with their care and rehabilitation when they are involved in the decisions and understand its purpose. Service users value being included and empowered, and the onus is on the providers to continue to attempt to do this across their recovery.

Adaptability. The fourth valued characteristic of providers is the extent to which providers are willing to accommodate varying service user needs and preferences in how they provide services, namely, the adaptability of the providers. This characteristic often coincided with provider expertise, suggesting that providers who have brain injury-specific knowledge are aware of the ongoing needs and more likely to make accommodations (Braaf et al., 2019; Brauer et al., 2011; Dams-O’Connor et al., 2018). Dams-O’Connor et al. (2018) found that patients with ABI valued providers adapting service provision to their specific needs, which included cognitive or memory limitations. The experiences reported in the research suggested the importance of providers who were willing to adapt the environment such as providing dimmed lighting or ensuring additional reminders of upcoming appointments (Dams-O’Connor et al., 2018). Participants suggested that when providers made these accommodations it facilitated their ability to keep appointments and follow through with provider recommendations. Other physical accommodations are also valued, including adapting service timing (Jumisko et al., 2007) or the willingness to conduct sessions from the service user’s home, which was outlined in some Australian studies (Chan, 2008; Doig, Fleming, Cornwell & Kuipers, 2011; Hall et al., 2012). Doig et al. (2011), interviewed people with TBI, their caregivers and occupational therapists soon after discharge from inpatient rehabilitation, and found that service users preferred to receive treatment at home as it gave them a sense of ownership of their therapy. Service users reported that this accomodation allowed caregivers to be involved and also avoided the trauma that could be triggered by being in a hospital setting (Doig et al., 2011). The theme of adaptable provision also emerged in regards to the timing of services, with emphasis on the importance of participant readiness for services, and therefore the need for services to be adaptable to the service user (Copley et al., 2013; O’Callaghan, McAllister & Wilson, 2012b). The emphasis on adapting the model of provision was evident in the reviewed literature. The more adaptable services seem to result in increased opportunity to fit services to need and subsequently, more likelihood of maintaining engagement of the service user.

Characteristics of the service systems have an impact on the experiences and perceptions of access, both in terms of what is realised and whether it is matched to service users’ needs. Synthesis of the themes are outlined below.

Navigable system. When considering the appropriateness of their access experience, being enabled to locate and navigate access according to needs was highlighted in several studies on experiences of people with ABI. A central feature of this was being informed. Research indicated that information about services was not provided consistently throughout the recovery trajectory and that often the information was insufficient (Dams-O’Connor et al., 2018; Graff, Christensen, Poulsen & Egerod, 2018; Schulz-Heik et al., 2017). The literature reflected that service users felt they were often provided with extensive information during inpatient rehabilitation; however, this stopped after discharge (Hall et al., 2012; Rusconi & Turner-Stokes, 2003). This poses a significant problem given the memory deficits common in early stages of recovery of ABI. One study’s findings relayed suggestions from service users that additional written resources that might ensure the information was assessable later in recovery trajectories (Hall et al., 2012).

The literature emphasised that service users perceived a general lack of information about where to go for rehabilitation, or further information about the rehabilitation (Graff et al., 2018; Harrington, Foster & Fleming, 2015; Pickelsimer et al., 2007). Graff et al. (2018) suggested that people with TBI felt a lack of transparency at an organisation level, such that there was no information on where to find appropriate rehabilitation, whom to contact about duration of symptoms or when to return to work. The study findings indicated participants felt that often those with severe TBI were supported to access care after discharge from hospital, for example they were allocated a case worker. However, those with moderate or mild TBI felt they were left to attempt to manoeuvre the system alone. Another study further supported the emphasis on the utility of the case management role to facilitate service users’ access, however, found that only five participants were receiving this support at three months post-discharge (Turner, Fleming, Ownsworth & Cornwell, 2011a). This research emphasises the need for provider and service-driven follow-up and continuity, with service users not feeling equipped to seek and utilise the information that is required and reporting they have to ‘chase the care’ to receive the services and support they need (Hyatt, Davis & Barroso, 2014).

Integrated care. Integrated care was a further feature of appropriate personal experiences of access. Ongoing provision of service throughout the recovery trajectory was a valued element of access (Hooson et al., 2013; Lefebvre & Levert, 2012; Strandberg, 2009). This research suggested that people with ABI often felt their care was disjointed. In particular, studies exploring experiences in the first year after discharge in Australia revealed that service users often experienced a lack of continuity from the hospital to the community (Chamberlain, 2006; Hall et al., 2012; Turner et al., 2007; Turner, Fleming, Ownsworth & Cornwell, 2008, 2011a, 2011b). The period of time moving back into the community from in-patient rehabilitation has been shown to be a critical time, in which appropriate available services can facilitate transitions (Turner et al., 2007; Turner et al., 2008). Results of a study by Turner et al. (2011a) suggested that the organisation of ongoing post-acute care services was often not completed as part of the discharge preparation process, and therefore families were often required to do this themselves, resulting in delays. These delays in service provision in those with ABI can result in the exacerbation of existing problems (Copley et al., 2013; Leith, Phillips & Sample, 2004; O’Callaghan et al., 2012a, 2012b). The reviewed literature emphasised that service users’ needs are often time-dependent, one study found that support with guidance and planning was often vital right after discharge (Rotondi, Sinkule, Balzer, Harris & Moldovan, 2007).

Additionally, the reviewed research suggests that integration of care between providers is a issue for the appropriate access of people with ABI (Braaf et al., 2019; Dams-O’Connor et al., 2018; Lefebvre & Levert, 2012; Strandberg, 2009). In one study participants indicated that they were able to effectively solve problems that emerged during their healthcare through medical providers collaborating on a care plan, discussing medication needs, or being referred to specialists who maintained regular contact with the referring provider (Dams-O’Connor et al., 2018).

Results of the reviewed literature indicated a need for a care coordinator. The literature suggested that service users would value a key contact, coordinator or case manager to assist with communicating with all the services, ensuring collaboration between providers (Braaf et al., 2019; Copley et al., 2013; Dams-O’Connor et al., 2018; Graff et al., 2018; Hyatt et al., 2014; Umeasiegbu, Waletich, Whitten & Bishop, 2013). However, this literature indicates that people with ABI are rarely able to have access to someone who would take on this role. Frequently it emerged that those who had caregivers, to advocate on their behalf, felt they were able to access the care they needed and supplement this lack of a key contact (Copley et al., 2013; Graff et al., 2018; Harrington et al., 2015; Harrison et al., 2017).

Adequacy. Adequacy of services received emerged as a theme in the literature. Inconsistency in the quality and sufficiency of provision from service providers was evident as a key issue when considering appropriate access for those with an ABI. The reviewed literature suggests that service users perceived varied quality in services they received and that providers were inconsistent in the level of effort they demand from service users, often resulting in poor improvement (Brauer et al., 2011; Rotondi et al., 2007). One study found that people with moderate and severe ABI described a mismatch between service users’ needs and clinician focus, in that often clinicians would focus on the physical and practical issues, resulting in service users with a lack of psychological support (Glintborg et al., 2018). Aligning with this, a study in war veterans reported that service users felt that providers were often treating symptoms as opposed to addressing the cause of the issues, which resulted in service users feeling the treatment was ineffective (Hyatt et al., 2014).

In addition to quality, sufficiency in the quantity emerged as important. Service users felt they accessed less than what they perceived they needed for maximal recovery, which ultimately resulted in these services failing to meet their needs (Braaf et al., 2019; Gill et al., 2012; Lexell et al., 2013; Turner et al., 2011a; Umeasiegbu et al., 2013). This aligns with concerns around receiving the right service at the right time. One component of receiving the right service at the right time is the fit of the service to the need of the service user. The ability to provide service users with this service when needed is reliant on the current system waiting and response times. The literature suggests that service users experience significant waiting times to access the services they need (Glintborg et al., 2018), and unexplained delays in service commencement after services have been approved (Abrahamson et al., 2017; Leith et al., 2004; Turner et al., 2011a). The notion of the right service at the right time, including the perceived intensity and frequency of services, echoes the emphasis on how the ideal of service user choice and control can be difficult to achieve in practice. The ability to provide service users with the right service at the right time is enabled by both system and individual-level factors. Research in this area suggests that not only is optimal care facilitated by access to the right service, but access to this service based on the individual’s recovery timeline and at their own pace at the right dose.

Opportunity. Opportunity to access appropriate services was reflected in experiences of those who were unable to access resources in particular areas, particularly regional and rural areas due to lack of availability (Dams-O’Connor et al., 2018; Keightley et al., 2011; Mitsch, Curtin & Badge, 2014). This lack of opportunity of access also emerged with regards to funding (Braaf et al., 2019; Harrington et al., 2015; Leith et al., 2004; O’Callaghan et al., 2010). Those receiving different funding were given the opportunity to access different services and different dosage of services, as opposed to accessing the services depending on their needs (Braaf et al., 2019; O’Callaghan et al., 2010). Research emphasises that often service users were restricted from accessing speciality providers due to funding restrictions, cost and transportation (Dams-O’Connor et al., 2018; Maratos et al., 2016; Toor et al., 2016; Umeasiegbu et al., 2013). Research conducted in the USA has consistently reported that people with a TBI, are often denied access due to rigid service criteria, and policies (Leith et al., 2004; Pickelsimer et al., 2007; Wyse, Pogoda, Mastarone, Gilbert & Carlson, 2020). In addition to being denied the opportunity to access to needed services, the research indicated that there is often a lack of opportunity to access appropriate resources altogether. Several studies revealed that often young people with an ABI were forced to receive care from nursing homes, as these were the only available facilities that could accommodate their needs (Eliacin et al., 2018; Graff et al., 2018; Winkler et al., 2011). In an Australian study, interviews were undertaken with those who had transitioned from an aged care facility to community-based accommodation (Winkler et al., 2011). Results suggested that when enabled to access more appropriate services, service users were able to make significant improvements in functional life skills, for example being able to regain continence, and engage in feeding themselves, as opposed to using feeding tubes and adult continence pads.

The need for opportunity to access appropriate resources emerged in several studies, which found that often the providers and resources available were not available in specific languages for people with brain injury, and there was no availability of translating services (Keightley et al., 2011; Mbakile-Mahlanza et al., 2015; Mitsch et al., 2014). Likewise, there was a lack of culturally sensitive access for people with brain injury, which may contribute to the often-compounded disadvantage experienced by these groups. This suggests that despite shifts in policies and services aligning with choice and control for service users, and provision of service based on need, people are still limited in their opportunity to access services appropriate to their needs.