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A systematic review of the qualitative literature on older individuals’ experiences of care and well‐being during physical rehabilitation for acquired brain injury

Abstract Aims To acquire an in‐depth understanding of how older individuals diagnosed with acquired brain injury (ABI) experience their well‐being and care when undergoing physical rehabilitation. Design Systematic literature review. Data sources The electronic databases of PubMed, CINAHL, APA PsycInfo, ASSIA and SCOPUS were searched from 2005 to 2020. Extensive reference checking was also conducted. Review methods A systematic review was conducted following PRISMA guidelines, including predominantly qualitative studies. Studies’ quality was appraised using the critical apraisal skills programme (CASP) tool. Results Seventeen studies met the inclusion criteria. Following methods of thematic synthesis, four overarching interpretive themes were identified: (a) Rehabilitation processes and their impact on older individuals’ well‐being; (b) Identity and embodiment concerns of older individuals during rehabilitation; (c) Institutional factors affecting older individuals’ care and well‐being experiences; and (d) Older individuals’ participation in creative activities as part of rehabilitation. Conclusion Organizational and structural care deficiencies as well as health disparities can adversely impact older individuals’ autonomous decision‐making and goal‐setting potentials. The discrepancy between older individuals’ expectations and the reality of returning home along with the illusionary wish to return to a perceived normality, can further negatively affect older individuals’ sense of well‐being. Constructive communication, emotional support, family involvement in rehabilitation and creating a stimulating, enriching social environment can humanize and facilitate older individuals’ adjustment to their new reality following ABI. Impact There is a lack of qualitative research on older individuals’ ABI rehabilitation experiences, especially traumatic brain injury incidents. Further study should consider patients’ concerns over their involvement in decision‐making and goal setting about their care. Overall, this review reveals the need to examine further the significance of humanizing care and the factors that affect older individuals’ sense of well‐being.


| INTRODUC TI ON
Acquired brain injury (ABI) is one of the most common neurological diseases, afflicting around 939 per 100,000 individuals worldwide (Dewan et al., 2019), with older people (65 years and above) being one of the most affected age groups (Jones et al., 2011;Yates et al., 2006). ABI is a chronic condition that pertains to mild or severe brain damage occurring after birth, which can entail serious life-changing ramifications and a potential high probability of mortality (Chan et al., 2013;Corrigan & Hammond, 2013;Giustini et al., 2013;Oyesanya, 2017). The literature further distinguishes between two types of ABI: traumatic brain injuries (TBIs) and nontraumatic brain injuries (nTBIs), mainly stroke. Essentially, the main difference between the two types concerns the cause of the brain damage, with the former referring to brain damage caused by an external force, whereas the latter to damage caused to the brain by internal factors (BIAA, 2020).
ABI's resulting consequences may be mild, moderate or severe (temporary or permanent) impairments and functional changes in one or more areas, leading to personal and psychosocial difficulties for individuals (Giustini et al., 2013;Jones et al., 2011). Common consequences experienced by people living with ABI range from physical to cognitive, emotional and behavioural difficulties, such as headaches, memory loss, depression and aggression (Giustini et al., 2013). Moderately to severely injured individuals may receive specialized rehabilitation care, including physical, psychological and/or neurological therapy, occupational therapy, speech/language therapy and social work (Giustini et al., 2013). The overall goal of ABI physical rehabilitation is to improve an individual's functional abilities and emotional state to live independently at home and in society in the face of the injury's residual effects (Giustini et al., 2013). Given the impending increase in ageing populations (United Nations, 2020) and the fact that ABI is often a lifechanging condition, physical rehabilitation for older individuals needs to focus more on these people's potential to live well.
There are different approaches related to well-being in the literature, including psychological, physical, socio-economical, mental and philosophical (Diener, 2009;Galvin & Todres, 2013). The current review will approach well-being from a philosophical perspective and based on the humanizing framework of care, as developed by Galvin and Todres (2013). Their definition captures the subjective, experiential and dynamic nature of well-being, emphasizing its positive and strength-based potential of enabling and empowering individuals to move forward, evolve and adapt to any potentially difficult life changes (Galvin & Todres, 2013). From this perspective, well-being can be considered a much deeper and more complex phenomenon than the mere absence of illness and suffering. Under the prevailing conditions, the concept of well-being during the physical rehabilitation of older individuals with ABI becomes quite salient deserving greater consideration, especially in improving ABI treatment programs (Jones et al., 2011).

| Background
Studies of the last two decades identify an increase of ABI incidents on people over 65 years old worldwide, especially in high-income countries (Chan et al., 2013;Majdan et al., 2016), with unintentional falls being the leading cause of TBI in older individuals Grigorakos et al., 2016;Peterson & Kegler, 2020). Also, stroke is the most common nTBI, with the risk of having a stroke doubling for every decade of life after 55, and with approximately 50% of all strokes occurring in people over age 75 and 30% over age 85 (Lui & Nguyen, 2018;Michael & Shaughnessy, 2006).
Research has shown that older individuals with TBI can achieve similar rehabilitation results regardless of the severity of the injury compared with younger patients (de Bonis et al., 2010;Lilley et al., 2016;Mak et al., 2012;Taussky et al., 2012). Hence, age and severity are insufficient indicators of accurate TBI prognosis (Peters & Gardner, 2018).
At the same time, increased positive psychosocial outcomes may occur in individuals with ABI, even when the brain damage is severe, such as improved quality of life, increased satisfaction and post-traumatic development (Muenchberger et al., 2008;Wood, 2008). Jones et al. (2011) conclude that changes in individuals' well-being after ABI are greatly affected by personal and social changes due to the injury. Boosting self-confidence and gaining more support from relatives can also play a crucial role in reducing the injury's negative impact (Jones et al., 2011).
Various qualitative and quantitative studies have investigated stroke individuals' experiences of rehabilitation, focusing either on their experiences about their daily lives after their discharge from the hospital or on their physical rehabilitation experiences during their hospitalization (Almborg et al., 2010;Barbour & Mead, 2012;Taule et al., 2015). Previous research also focused on individuals' experiences of poststroke fatigue (Barbour & Mead, 2012;Eilertsen et al., 2013), on individuals' involvement in their rehabilitation goal setting (Brown et al., 2014;Lloyd et al., 2014;Wressle et al., 1999) and on age-related perspectives with particular emphasis on older individuals (Andersson & Hansebo, 2009;Pound et al., 1994).
Beyond empirical research studies, there are literature reviews exploring stroke individuals' inpatient physical rehabilitation experiences. their care. Overall, this review reveals the need to examine further the significance of humanizing care and the factors that affect older individuals' sense of well-being.

K E Y W O R D S
acquired brain injury, nursing, older individuals' experiences, physical rehabilitation, stroke, systematic review, well-being Luker et al. (2015) reviewed 31 studies, and all reported negative experiences of rehabilitation, including disempowerment, boredom and frustration, lack of control, lack of understanding and lack of effective communication. Rosewilliam et al. (2011) also indicate negative experiences and various barriers that hinder applying a patient-centred goal-setting model in stroke rehabilitation practice. Lastly, the review of Neils-Strunjas et al. (2017) explored the construct of resilience in rehabilitating adults with ABI concluding that resilience has a vital role in the recovery and rehabilitation process by amplifying individuals' adaptation and emotional adjustment following ABI.
Still, there seems to be a scarcity of literature that identifies links between subjective experiences of older individuals living with ABI and their sense of well-being during rehabilitation. Moreover, participants in relevant studies usually consist of individuals under 65 years old or include both younger and older individuals. Qualitative studies dealing with this subject area are also quite limited, as most recent literature mainly adopts quantitative methods.

| Aim
The purpose of this review is to acquire an in-depth understanding of the available literature on how older individuals diagnosed with ABI experience care and well-being during rehabilitation for ABI.

| Design
The current review focuses on the systematic investigation of primary qualitative research studies that explore the experiences of older individuals with ABI about their well-being and physical rehabilitation. We used the process outlined by Bettany-Saltikov and McSherry (2012) to review the available literature systematically.
The first author carried out the search, screening, data extraction and quality appraisal of the studies. All authors assessed and approved the search, screening and data extraction processes, thus avoiding any inconsistencies. All authors carried out the analysis, synthesis of results and writing up of the manuscript.
The PEOT (Population, Exposure, Outcome, and Type of studies) format was used to identify the significant components of the review's question (Khan et al., 2003). Subsequently, we used the Preferred Reporting Items for Systematic Review and Meta-analyses (PRISMA) guidelines to comprehensively display the identified records' selection process and report the findings (Moher et al., 2009).

| Search methods
Specific keywords and synonyms were identified and developed for each PEOT question component. Truncations and abbreviations of the keywords were also used with specific Boolean operators to obtain as many relevant results as possible (Watson, 2020). Table 1 presents the search terms and keywords used to conduct the electronic search. The first column lists the PEOT components and the second column presents all the keywords, truncations and abbreviations that we identified. Table 1 represents the final refined search version of this systematic literature review that includes the keyword 'stroke'. The inclusion of the keyword 'stroke' in the search strategy was important since stroke constitutes one of the most common ABIs in older populations, and at times studies use the terms 'stroke' and 'ABI' interchangeable (Lui & Nguyen, 2018).

| Eligibility criteria
The current review developed specific eligibility criteria to guide the overall screening process and selection of studies. The review included qualitative studies that focused on the experiences of care and wellbeing of individuals aged over 65 years (or mean age over 65 years), living with ABI and undergoing/underwent physical rehabilitation, which takes/took place in a formalized care setting or at home. Furthermore, for studies to be eligible for inclusion in the current review, their emphasis needed to be on caring. The review excluded articles that focused on individuals who received rehabilitation more than once and for another reason apart from ABI and studies researching people diagnosed with brain injury as part of a drug trial. Studies whose participants were only family members, carers or health professionals were also excluded. Lastly, the review excluded studies that referred to hospitalizations in intensive care units, coronary care units or high dependency units because they provided rehabilitation of critically unwell people (NHS, 2019).

| Search outcomes
In total, 2746 records were retrieved from the databases' initial search.  Figure 1 displays the PRISMA flow diagram, which provides an overview of the review search's selection process.

| Quality appraisal
The included studies were assessed for their methodological quality by applying the critical appraisal skills programme (CASP) tool to strengthen further the review's internal validity (Critical Appraisal Skills Programme, 2018). The quality appraisal produced no studies of insufficient quality. All articles scored with high methodological quality: seven studies met all 10 criteria of the CASP checklist, while the remaining 10 met 9 out of 10 criteria, as they did not explicitly examine or reflect on the researchers' potential biases and/or influences. The lack of reporting of this specific item in some studies did not impact the articles' quality.
The methodological quality score of each study is presented in Table 3.

| Ethical considerations
The current study is a systematic review, and therefore it was not required to be submitted for an ethics committee approval.
Nonetheless, extra care was taken to ensure that all studies included in the review confirmed they had approval from ethical committees and maintained ethical principles.  Table 4 presents the characteristics of the included studies.

| Synthesis
The synthesis of the selected studies' content was based on the thematic synthesis approach, as developed by Thomas and Harden (2008), by taking the form of three stages. First, all studies' outcomes and results were coded using the NVivo software. The codes were assessed and reviewed to ensure their meaning remained consistent without misinterpreting and misrepresenting key ideas (Creswell, 2009 physiotherapy duration expressing their wish for more sessions during the week and arguing that additional physiotherapy can benefit their recovery. In a similar vein, participants in Tholin and Forsberg (2014), reported that they preferred a more intense and varied inpatient rehabilitation programme provided by knowledgeable and encouraging professional staff. Family involvement in rehabilitation was another salient topic, with studies indicating the beneficial effect of family engagement on older individuals' physical and emotional recovery (Galvin et al., 2009;Loft et al., 2017;Poltawski et al., 2015;Tholin & Forsberg, 2014). Motivators for engaging in the rehabilitation process, including a de-medicalized approach to care and an emphasis on lifestyle modifications, were found to promote a sense of well-being in older individuals (Poltawski et al., 2015). Olofsson et al. (2005)  Titles and abstracts screened: requiring great physical and emotional effort (Wray et al., 2019).
Furthermore, when returning home, older individuals quickly realized that they were not the same persons as before, perceiving themselves as ABI (stroke) survivors and feeling anxious about becoming ill again (Olofsson et al., 2005).
An additional issue that can intensify older individuals' disillusionment and dissatisfaction is that their opinions are not taken into consideration after hospital discharge, and they may also have no choice about where they would go after their acute rehabilitation phase (Krishnan et al., 2019;Tholin & Forsberg, 2014). As Krishnan et al.

| Theme 2: Identity and embodiment concerns of older individuals during rehabilitation
The existential concerns of older individuals with ABI during rehabilitation and how these concerns affect older individuals' recovery also emerged as a salient theme during the review. Wray et al. (2019) reported older individuals' desire and need to preserve a sense of autonomy during their rehabilitation and maintain hope and progression towards recovery; this empowered many participants to move forward and cope with their rehabilitation.
According to Mangset et al. (2008), the sense of well-being for individuals with ABI undergoing rehabilitation links to their perception of the quality of rehabilitation they receive and to a felt sense of dignity and humanity in their treatment. Mangset et al. (2008) argue that older individuals' need for autonomy and dignified care derives from the vulnerability and dependence that many feel because of their diagnosis and the rehabilitation process.     (Loft et al., 2017;Tholin & Forsberg, 2014). Older individuals undergoing rehabilitation are overwhelmed with sentiments of passivity, docility, subordination and dependency in their struggle to (re)define their identity and regain a sense of autonomy (Löfmark & Hammarström, 2005;Olofsson et al., 2005).
Two studies adopt a gender perspective to explore older individuals' experiences and conceptualizations with stroke during their rehabilitation. Andersson and Hansebo (2009), assert that in the aftermath of a stroke, traditional gender roles equally influence both women and men, but in different ways, in their goal setting and identity (re)construction.
Therefore, older women undergoing rehabilitation aim to regain more traditionally feminine roles, such as being housewives and independently carrying out household activities. In contrast, older men aim to regain more traditionally masculine roles, such as independently carrying out outdoor and leisure-time activities (Andersson & Hansebo, 2009 (White et al., 2015).

| DISCUSS ION
The current review's findings demonstrate variations about older individuals' ABI rehabilitation experiences that impact on their sense of well-being. Participants had an initial positive view of their inpatient rehabilitation, but this was tampered with by both the rehabilitation processes' content and its application to their daily reality.
Long waiting times between physiotherapy sessions and the physiotherapy's shortened duration hampered the rehabilitation content.
The literature studying the impact of long waiting times for patients concludes that this can be the prime causal factor for patients' dissatisfaction, frustration and distrust towards health professionals and the care system due to the broken promise for timely care (Cooper et al., 2008;Leddy et al., 2003). A set of other sources further suggest that more days of care or physiotherapy and additional sessions can benefit their care and the rehabilitation process leading to better functional recovery (Kinoshita et al., 2017;Leddy et al., 2003;Luker et al., 2015). However, extending the rehabilitation session duration and prolonging the rehabilitation process impinges on the appropriate staffing levels of health services which are currently critically understaffed (Buerhaus et al., 2007;Marć et al., 2019;Oulton, 2006;WHO, 2020).
Moreover, according to other research studies, the limitations of the physiotherapy sessions' content and shortened duration adversely impact older individuals' autonomous decision-making and goal-setting potentials. Bamm et al. (2015) and Peoples et al. (2011) highlight the detrimental effect that caregiving's passivity has on older individuals where voices on preferences about their caring process usually remain silent, and health professionals' opinions overpower older individuals' views. In addition, cases of limited patient-centredness and dysfunctional relationships between individuals and healthcare professionals-together with the silencing of older individuals' preferences-seem to disempower older individuals from setting attainable rehabilitation goals by inhibiting their potential to self-regulate and self-monitor their physical activities and having adverse effects on their adaptation to the rehabilitation process and their sense of well-being (Rosewilliam et al., 2015;Shilts et al., 2004). Furthermore, such goal-setting limitations can become restrictive for older individuals' sense of autonomy and lead health professionals to assume more controlling roles by limiting the provision of information and setting (or influencing) goals on behalf of the older individuals (Barnard et al., 2010;Levack et al., 2011;Stevenson et al., 2000). The condescending treatment that older individuals feel they receive can amplify their mistrustfulness towards health professionals and aggravate the risk of failure in dealing with lifestyle modifications effectively (Jonsen et al., 2015;Zolkefli, 2017).
The current review identifies that the above limitations in  (Hakkennes et al., 2011;Magdon-Ismail et al., 2016;Putman et al., 2007). In addition, the effects of neoliberal policies on healthcare issues can partly explain the limitations in older individuals autonomy and decision-making capacities as free-market and individual financial mismanagement can lead to widening disparities in the level, and quality of care people receive (Harvey, 2005;McGuigan, 2014;Sakellariou & Rotarou, 2017).
The review's findings also highlight a dissonance between expectations and the reality of returning home from acute hospitalized rehabilitation for older individuals who suffered an ABI. The initial joyful anticipation and sense of delight for returning home and going back to the perceived normality proved to be an unfulfilled wish or an illusionary expectation as the perceived normality before the rehabilitation process due to the ABI incident no longer existed.
Similarly, other sources identify that the transition period from acute hospitalization to homecoming is not an easy one and considers it a weak point, as significant changes occur in their capacity to carry out daily activities and in encountering for the first time the consequences of their functional limitations (Jönsson et al., 2017;McCabe & Kennelly, 2015;Nordin et al., 2015). Moreover, gendered imperatives further intensify the dissonance between expectations and the homecoming reality as traditional gender roles pressurize men and women to meet expectations and goals not able anymore to achieve (Kvigne et al., 2004;McCormick & Bunting, 2002

| Limitations
Including only English language articles in the review may have restricted the range and amount of data retrieved. Also, ABI is an umbrella term that has resulted in certain types of ABI, such as stroke, being more prevalent in the reviewed studies than other ABI types, potentially impacting the review results. However, this limitation indicates the need for more studies concerning types of ABI that go beyond stroke. Also, most studies included in their sample both older and younger individuals, with just three studies focusing exclusively on older individuals. This could inadvertently impact this review's results, as there may be discrepancies in the experiences of care and well-being between older and younger individuals living with ABI. However, this limitation also indicates the need for more studies focusing exclusively on older individuals living with ABI.
Finally, this qualitative review cannot produce representative or predictive results on individuals living with ABI undergoing physical rehabilitation. Nonetheless, it can provide significant insights into their experiences that would be useful for practitioners and researchers in understanding the linkages between ABI, well-being, and physical rehabilitation.

| CON CLUS ION
This systematic review provides an overview of the literature relating to older individuals' experiences of well-being and of the care they receive during their ABI physical rehabilitation. Long waiting times between physiotherapy sessions, disconnecting rehabilitation from individuals' daily reality, and shortening the physiotherapy duration, adversely impacts older individuals' autonomous decision-making and goal-setting potentials. Furthermore, inadequate and ineffectual interaction between health professionals and older individuals who suffered ABI undergoing rehabilitation, the dominance of health professionals' voices in decision-making, and health disparities further impede older individuals' decisionmaking in the post-acute care phase. Also, the dissonance between expectations and the reality of returning home from acute hospitalized rehabilitation, and the illusionary and unfulfilled returning to a socially constructed normality added another layer of difficulty for older individuals with ABI undergoing rehabilitation, that negatively affected their sense of well-being. Efficient and effective communication, emotional support, family involvement in the rehabilitation process, and creating a stimulating and enriching social environment can ease, humanize and facilitate older individuals' adjustment to their new reality following ABI and the need for rehabilitation.
As there are few qualitative studies published that deal with older people's ABI rehabilitation experiences with most of them focusing solely on stroke, future research should consider shifting focus towards both TBI and nTBI rehabilitation experiences and the older population's perspectives. The review reveals the need to examine the significance of humanizing care and further explore the factors affecting older individuals' emotional condition and their sense of well-being. In addition, the current review identified that while ABI services for younger people follow a more patientcentred approach, this is not equally reflected in the rehabilitation of older people diagnosed with ABI. Future studies should also consider patients' concerns over their involvement in decision-making and goal setting about their care. Overall, the current review lays down the path for further study on how dignified care for older individuals with ABI can be achieved or enhanced in formalized healthcare systems.

CO N FLI C T O F I NTE R E S T
We have no known conflict of interest to disclose.

AUTH O R CO NTR I B UTI O N S
PL: made substantial contributions to the conception and design of the review, carried out the search, screening, data extraction and quality appraisal of the studies. PL, CH, MG, AP and SM: assessed and approved the search, screening, and data extraction processes; PL, CH, MG, AP and SM: carried out the analysis and synthesis of results; PL, CH, MG, AP and SM: were involved in writing up and revising the manuscript; All authors gave final approval of the version to be published.

PEER R E V I E W
The peer review history for this article is available at https://publo ns.com/publo n/10.1111/jan.15016.

DATA AVA I L A B I L I T Y S TAT E M E N T
Data sharing not applicable -no new data generated.