Perspectives of choice and control in daily life for people following brain injury: A qualitative systematic review and meta‐synthesis

Abstract Background and Objective Acquired brain injury (ABI) can result in considerable life changes. Having choice and control over daily life is valued by people following ABI. This meta‐synthesis will analyse and integrate international research exploring perspectives of choice and control in daily life following ABI. Methods Databases were searched from 1980 to 13 January 2022 for eligible qualitative studies. After duplicates were removed, 22,768 studies were screened by title and abstract, and 241 studies received full‐text assessment with 56 studies included after pearling. Study characteristics and findings were extracted that related to personal perspectives on choice and control by people with an ABI (including author interpretation and quotes). Data from each study were coded and then segments of coded data across the studies were compared to create multiple broad categories. Findings Findings were then reduced from categories into 3 overarching themes with 12 subthemes. These themes were: (1) feeling like a second‐class citizen; (2) reordering life and (3) choosing a path. Participants with an ABI tussled between their feelings of loss following brain injury and their thinking about how they start to regain control and become agents of their own choices. The themes describe their sense of self, their changed self and their empowered self in relation to ‘choice and control’. Conclusions Re‐engaging with choice and control after ABI is dynamic and can be challenging. Health professionals and supporters need to facilitate a gradual and negotiated return to agency for people following ABI. A sensitive and person‐centred approach is needed that considers the readiness of the person with ABI to reclaim choice and control at each stage of their recovery. Clear service or process indicators that are built on lived experience research are needed to facilitate changes in service delivery that are collaborative and inclusive. Patient or Public Contribution This review included the voices of 765 people living with ABI and was conducted by a diverse team of allied health professionals with practice knowledge and research experience with people following ABI. Twenty‐nine of the 56 included studies had participants contributing to their design or analysis.


| INTRODUCTION
Acquired brain injury (ABI) is an overarching term for brain damage acquired from stroke, infections, toxins, tumours, hypoxia or traumatic brain injury (TBI). 1 The most common categories within ABI are TBI and stroke. Sixty-nine million individuals have been estimated to experience ABI each year, with the Southeast Asian and Western Pacific regions having the greatest overall incidence. 2 ABI may result in cognitive, physical or emotional impairments and reduced independent functioning 3 leading to long-term and complex disability. 4,5 Limitations that result from ABI may continue for decades and relate to ongoing participation restrictions. 4 ABI can impact a person's engagement 6 including difficulties with performing activities of daily living, participating in a full round of social activities with friends and family and engaging in work or study and caring for family members commensurate with one's life stage.
In the first 3-6 months after returning home following ABI, there is a growing self-awareness of new capacities and the need for meaningful activities. 7 This phase requires flexible support services that facilitate the transition to the community. The complexity and rigidity of service systems impact transition success and may amplify difficulties that the person with ABI and their caregivers experience during transition. 8 People with ABI and their families have reported being excluded and restricted by authorities. 7 Conversely, they have also reported feeling supported by people who listened to them and demonstrated a desire to understand rather than judge. 9 Therapists need to be skilled in collaborative goal-setting, weighing up risks and autonomy as a person-centred interaction, using critical elements of control, empowerment, support and advocacy. 9 Regaining control over everyday life has been linked with feeling well by people with moderate to severe ABI, 10  general, has been questioned. 13,14 These questions relate to consumers having the skills and knowledge to advocate for their needs in a bureaucratic environment, 13,14 leaving them vulnerable and reliant on the competence and skills of those providing the services. 15 A 2019 systematic review for people after spinal cord injury concluded that exercising choice and control requires a complex interplay of systems and that protective and insensitive attitudes of the people around the person with SCI (health professionals, family, support people) can create barriers. 16 A study exploring opportunities for choice and control in Swedish individualized home care for older people highlighted the importance of supportive relationships, and the interdependence between older people and their formal, as well as informal, support networks to have an effective choice of home care services. 17 Factors facilitating choice and control may differ across health conditions and demographics. While a framework that focuses on understanding the preferences of people with cognitive disabilities 18 can enable better experiences of shared decision-making, there has been limited application to people with ABI. To our knowledge, no review has conducted a synthesis of the literature exploring the experiences of adults with ABI regarding choice and control. Therefore, this review will address the question: What are the views of people living in the community with ABI on their ability to exercise choice and control in their daily life? 2 | METHODS

| Study design
Meta-synthesis using the meta-ethnographic approach. 19 Our review was registered with the International Prospective Register of Systematic Reviews, PROSPERO, in May 2016 (CRD42016038680).
The protocol followed the Enhanced Transparency of Reporting the Synthesis of Quality Research (ENTREQ) reporting guide 20 and the PRISMA for systematic reviews. 21  were not searched as these databases were no longer available.

| Search strategy
Search terms included subject headings and free-text words related to 'choice', 'control', 'acquired brain injury' and 'personal perspectives'. The search terms were reviewed by an academic librarian and conducted initially in Medline and then adapted for use in each database. Search parameters were limited to humanonly and studies published after 1980 because this era marked the beginning of the deinstitutionalization of people living with ABI.
The complete Medline search is outlined in Supporting Information: Appendix S1.

| Study selection
Duplicate articles were removed using EndNote™X9 (www.endnote. com; Clarivate Analytics), then exported into Covidence™ (www. covidence.org; Veritas Health Innovation) and two reviewers independently screened titles and abstracts. Full-text articles were then reviewed independently by two reviewers. Conflicts were resolved by a third independent reviewer. Reference lists of included studies were hand-searched to source additional papers.

| Inclusion and exclusion criteria
Qualitative studies were included. Mixed methods studies were included if the qualitative data was separate. Full inclusion and exclusion criteria are explained in Table 1. The definition of choice and control was taken from a similar systematic review with a different population: 'choice was the opportunity to make a decision when two or more options were presented. Control was the ability to influence an action or course of events' (Murray et al. 16 ,p.5). Whilst the focus of the review was on community experiences, it became clear that hospital experiences of choice and control are relevant once people leave the hospital and these perspectives could not be separated. Therefore, when studies included community participants reflecting on their hospital/inpatient experience, these data were also extracted.

| Data extraction and synthesis
Data were extracted into a customized spreadsheet independently by two reviewers. We followed the process outlined by Noblit Figure 1.
One eligible study was in French and was translated for inclusion. 25 One study in German could not be located and was excluded at the title and abstract.

| Study characteristics
Fifty-six studies were included from 13 countries, including Australia (n = 13), United Kingdom (n = 10), Canada (n = 10), United States (n = 6), Norway (n = 5), Sweden (n = 5) and 1 paper from Ireland, France, Denmark, Uganda, Portugal, the Netherlands and New Zealand. Twenty-nine studies (52%) had public and participant involvement either through co-design/consultation, piloting of interview guides or member checking. A summary of the study aims and participant numbers for each paper is provided in

| Meta-synthesis findings
The third-order analysis confirmed three higher-order themes, each with four subthemes. These were 'feeling like a second-class citizen', to the themes and subthemes can be found in Table 4. Each theme and subtheme are illustrated with quotes provided in Table 5.

| Theme 1: 'Feeling like a second-class citizen' 37
Participants reported considerable loss and change in their lives in response to their ABI. This loss had them feeling depersonalized (and second-class), isolated and trapped as they worked to readjust their sense of self.

| Being depersonalized
The sudden impact of the ABI on cognition and function contributed to participants' relinquishing control to others. [49][50][51] It was difficult for participants to see that they had any control over their recovery or progress. 25 44,58 Depersonalization was accompanied by the awareness of being dependent on and needing to trust others due to physical and cognitive limitations. 27,29,31,35,44,46,57,60,71,77 This loss of control was described as 'very frustrating', 31 'the hardest thing' (P1), 71 a 'disaster' (P10) 71 and 'derailing'. 29 There were feelings of rage, resentment, fear, 25,58 helplessness 32,51 and vulnerability. 43 Participants struggled with being projected into passive roles where they felt like 'more of an object for caring measures' 2 and 'a vegetable'. 35 25 and having a job/income. 58,74 There was psychological trauma associated with the incident itself, such as a participant whose child died in a car accident, 25  The nature of relationships before the injury and the pre-existing level of trust and understanding were pivotal. 35 This reticence meant relying on others to judge the risk 43 or decide limits. 65 Where choices were made by others, participants wanted to be regularly offered the opportunity to reinstate control. 37,75 Participants deliberately worked toward reclaiming control. 26 There was an associated adjustment in identity and self-concept about what to do next. 29,40,48,52 For some, there was a choice to prioritize health, leisure and family and taking initiative in reestablishing or maintaining social and familial connections. 29,45,49,52,63,65,73 Another common priority was independence, self-management and self-care, 26,46,55,57,61,65 and a change or strengthening of spiritual belief systems. 32,56 There was an appreciation of simple pleasures that were previously taken for granted, such as being alive, 29,37,75 having a job, 10 nice weather, slowing down, 29,54 discovering new tools, 65 carpentry 40 and being with family. 25,63 Participant understanding of the value of having roles and being socially connected plus the desire to take control led them to extending themselves to evaluate their limits. 25,32,40,57,77,78 There was an eagerness to resume activities that were performed before the ABI, 29,34,57 but the reflective process established that this was not always possible. 40,43,52 Some participants were positive about their capacity to progress at work or study, even if needing to reduce load; but others reevaluated their ambitions in light of living with an ABI. 32,34,39,40,52,56,73,78 The reclaiming of their former work/study roles in some capacity was validating and gave a positive sense of purpose and belonging 39,40,45,52,57,76 for those who chose this path.
Finding work, volunteering or returning to study were often key steps toward achieving a positive outlook, even when symptoms following the ABI persisted. 10,25,40 T A B L E 5 (Continued)

No. Theme Quote
Seeing progress and taking time to accept It's a struggle to accept the fact that I'm not the person I used to be, that I can't contribute like I used to. (Green, 2009(Green, , p. 1197) I think the hardest part is getting learn to live with your new body. You have to take a rest when your body tells you otherwise you're going to pay for it. (Wood, 2010, p

| Being included and given choices
Participants experienced inclusion when they felt respect for their dignity and privacy and when given the opportunity to exercise choice so they could learn, adapt and get to know themselves better. 25,32,47,53,57,69,78 Where participants were excluded, they felt devalued and discouraged. 42,46,47,58,70 Inclusion led to hope and confidence 32,40,45,76 ; particularly when addressed personally and listened to, 36,42,47,54,67,70 when consulted about their rehabilitation/ health/study plan, 35,40,42,74 and when part of goal setting. 32,53 Including the participant in goal setting promoted trust 61 and was described as a powerful experience. 36 When participants were provided with choices by health professionals they could choose their path based on their preferences, values and goals 53,64 even if they needed help. 38

| Knowledge is power 67
Choosing a path to acceptance in the context of their trauma, diagnosis and adjusted abilities, relied on the participant accessing information and knowledge from health professionals. Having access to knowledge promoted empowerment and security 36 and in turn, provided relief 10,36 and hope. 51 Knowledge was pivotal to participant capacity to regain control 46,51,67,74 because it gave collateral to ask questions. They wanted information about their condition, medical procedures, medications, prognosis 44,54,60,69 and time frames for therapy. 70 There was not always sufficient information forthcoming for the participants to make autonomous and complex decisions about their desired path. 32,38,42,55,74 Some participants took matters into their own hands through independent research. 42,51,58 Others persisted with stating their preferences and asked lots of questions to keep control over their interests and push back on decisions they disagreed with. 38,42,51,66 3.7.3 | Seeing progress and taking time to accept Progress toward acceptance and choosing a path required patience and resilience. 34,35,64,70 Participants commented on the internal struggle to adjust to limitations on roles and abilities 34,50,56 and not everyone reached a point of acceptance. 25,29,39,67 Choosing to maintain hope and persevering were ways for keeping control 35,50,57,62 and acceptance was discussed in terms of years; with reflections spanning from less than 2 years to 20 plus years.
The initial loss of both roles and independence resulted in a reframing of identity and priorities. 37,38,49,57 They aimed to make choices that aligned with their values, and this started to shape their perception of who they were and wanted to be. 26,29,40,56,57,65,74 Participants were mindful of how the ABI may have modified their personality, priorities and abilities. 29,32,34,48,52,57,63,65 For some it meant altering their lifestyle, focusing on healthy choices and putting effort into valued occupations (i.e., study). 32,40,48,54,63 Some participants felt more content when they lived in the moment without placing pressure on themselves, 10,29,34 others chose to be forward thinking 25,30,32,74 at the same time as being kind to themselves. 29,32,37,71 Participants began to identify with being a person who is dependent on others, 26,27,65,73 who has constraints on ability 29,37,56,57 and who has a changed future and relations. 25,45,57,61 With increasing control and flexibility over their choices and opportunities, participants became more futureoriented. 26 where dependencies become manifest. However, it is also apparent that the transition out of acute medical care (and the requisite safety considerations) can be slow or incomplete, whereas people following ABI need it to be dynamic to allow the emergence of their choice and control from these dependencies in an explicit and staged manner tailored to their needs. As the impact of the ABI becomes more understood and accepted by individuals, there needs to be a parallel conversation about how these dependencies can best be approached so that even, amid dependency, people can begin to have choice and control. This sensitivity requires constant mindfulness from health professionals who implicitly hold power in post-ABI care; from timetabling, services, approaches and goal setting 80,81 even through to hope.
The simple yet highly effective approach of collaborative goal setting from the person's point of view is one of the most evidence-based ways to ensure that the person feels they are at the centre of choices and control. 82,83 Offering choice in how best to work towards these goals could be a part of service delivery that is negotiated rather than prescribed. Structured frameworks for shared decision-making could be explicitly applied to support negotiations and collaborations. 18 Tacit discussions about risk identification and mitigation between the person, their health professionals and family/supporters again shift the power to a shared model. 9 Empowerment can be explicitly staged into rehabilitation pathways with education, understanding, responsibilities and decision-making discussed and shared.
This leads to needing dynamism between protection from harm and the opportunity to test limits that occur as the person widens their environment to include family, social and vocational domains (Theme 2). Again, dependencies need to be negotiated so that choice and control can occur in a staged way-from the timing of activities to the amount of assistance and degree of participation. This requires the broader support network to become part of the negotiation and education including family, friends, co-workers and supporters. 84 Finally, in Theme 3, the meta-synthesis has identified the need for staged, bespoke and deliberate restoration of choice and control for people following ABI (rather than one approach for all). This need arises when the person with ABI is ready to exercise choice and control to renegotiate their new path. This renegotiation involves deciding where and how they find meaning and purpose and make sense of their changed abilities. Community-based services could pivot to this goal or series of goals and enable individuals to discuss and explore internal themes of agency and self-determination by changing the locus of control and enhancing self-efficacy. Evidence is emerging that programmes for people with ABI that are based on self-management can improve self-efficacy 85 and empowerment can emerge from staged mastery and competency processes. 86

| Strengths and limitations
The review had a preregistered protocol and followed gold standard reporting (ENTREQ statement). 20 Screening, data extraction and critical appraisal were completed independently by two reviewers.

| Recommendations and conclusion
People with ABI describe a dynamic and often problematic process of re-engaging with choice and control after their life-changing injury.
Health professionals and supporters need to be equipped with the skills and knowledge to facilitate a gradual and negotiated return to agency for people with ABI. 87 These skills include being collaborative, focused on the individual with ABI and knowledgeable about dignified risk management. 9 Clear service or process indicators of change need to be developed to allow for evaluation and monitoring of services such as: (1) participant inclusion in goal setting, tacit sessions to address understanding, acceptance and competence individually and in peer groups, (5) education for the community and social supporters that raises awareness of the issues described by people with ABI (and helps them develop the skills to support the person).
Recommendations for practice include regular 'checking' in with the person with ABI about their readiness to engage with choice and control, a tailored approach to health professional involvement and collaborative involvement in setting rehabilitation goals as an imperative.