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.

Reclaiming Agency in Care Decisions and Barriers From the Perspectives of Individuals With Acquired Brain Injury and Their Family Members

“…Care coordination, timely access to services and clinician consistency helped people to stay informed of their postdischarge care. Focusing on individuals with ABI living in the community, a systematic review by Murray et al [13] identified that readiness to reclaim choice and control was a gradual process facilitated by and negotiated with health professionals and supporters [13]. Extending on these accounts, the current research identified person‐level and contextual barriers and facilitators to individuals developing self‐advocacy skills during hospital and early postdischarge care.…”

“…More directive support strategies such as orientation cues, explanations of care procedure just before their delivery and emotional support are most appropriate during PTA [26,28]. Clear communication, collaborative decision-making and having a positive attitude towards enabling individuals with ABI to self-advocate are key across levels of agency and rehabilitation settings [5,13,29]. Stanley et al [29] found that professionals can experience tension in supporting dignity of participation whilst managing risk.…”

“…The current conceptualisation of reclaiming agency over care decisions builds upon previous research exploring individuals' early understanding of their ABI in hospital and their care in the community [7,13,25,26]. Carrier, Ponsford and McKay [26] identified families' integral role in advocating for early care needs of individuals with ABI, due to initial neurocognitive changes.…”

“…Person‐centred practice frameworks advocate the importance of ‘supporters’ and ‘supported decision‐making’ enabling individuals with ABI to be increasingly involved in goal‐setting and decision‐making [5]. Re‐engaging with choice and control in the community after ABI has been described as a dynamic and challenging process, requiring clinicians and supporters to facilitate a ‘gradual and negotiated return to agency’ [13, p. 2710].…”