Indicators of life success from the perspective of individuals with traumatic brain injury: a scoping review

Nalder, Emily; King, Gillian; Hunt, Anne; Hartman, Laura; Szigeti, Zara; Drake, Emma; Shah, Riya; Sharzad, Maryam; Resnick, Myles; Pereira, Giles; Nekolaichuk, Erica

doi:10.1080/09638288.2021.2025274

Cited by 7 publications

(5 citation statements)

References 110 publications

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“…This extension of the narrative to one beyond the individual that also considers the experiences of others may reflect the importance of social connection and interaction to the recovery process. Existing research highlights the value of narrative storytelling for positive identity growth (D'Cruz et al., 2020a; McPherson et al., 2018; Nalder et al., 2022). The results from this study suggest that individuals with TBI perceive the experiences of family and friends as an important component of the illness narrative, which may be a useful consideration for future research exploring narrative‐based treatments.…”

Section: Discussionmentioning

confidence: 99%

“…These participants indicated concepts of trying to improve and staying positive throughout their recovery journey, which has been reported as a facilitatory factor in other research on TBI recovery (Downing et al., 2021a). Having an adaptive and empowered mindset appears to be important for life success following TBI (Nalder et al., 2022). Exploring this topic is highly relevant for the TBI population given the increased risk of mental health disorders such as depression, which is linked to the concept of hope.…”

Section: Discussionmentioning

confidence: 99%

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Perceptions of communication recovery following traumatic brain injury: A qualitative investigation across 2 years

Elbourn

Brassel

Steel

et al. 2022

Intl J Lang & Comm Disor

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BACKGROUNDExploring the perceptions of individuals with traumatic brain injury (TBI) towards their brain injury recovery across the continuum of care may offer insights to support engagement with rehabilitation services. Illness narratives are a potentially valuable avenue for examining perceptions of recovery that may influence engagement.AIMSThe aim of this study is to explore the perspective of individuals with severe TBI towards their communication, brain injury and recovery experiences at 6 months, 1 year and 2 years post‐injury.METHODS & PROCEDURESDiscourse samples were obtained from 12 participants with severe TBI at 6 months, 1 year and 2 years following injury. A standardised protocol was used to elicit responses relating to perceptions of communication, the brain injury narrative, and perceptions of recovery facilitators. A thematic analysis of the discourse samples was completed.OUTCOMES & RESULTSThree overarching themes were identified: experiences of communication recovery are diverse (Theme 1), varied experiences of recovery and rehabilitation (Theme 2), and continuous and lifelong journey of recovery (Theme 3). Primary communication concerns included presence of anomia, dysarthria, conversational topic difficulties, impacts of fatigue and memory difficulties. Illness narratives revealed the importance of re‐establishing a sense of self and the perceived importance of a strong social network post‐injury.CONCLUSIONS & IMPLICATIONSThe varied nature of communication challenges and recovery after TBI highlights the need for holistic, multidisciplinary support as well as inclusion of family and friends in the recovery process. Social communication intervention is a perceived priority area for individuals with TBI. Illness narratives may also play a valuable role in therapy and help to shape post‐injury identity. Managing the impacts of fatigue on communication and encouraging individuals to take ownership over their recovery and treatment may also help to improve patient outcomes. Supporting individuals to construct positive brain injury narratives that reaffirm a sense of self and include perspectives of family and friends may offer a potential future avenue for rehabilitation. Tailored but flexible, team‐based service delivery models for individuals with TBI that span from acute to long‐term care are warranted.What this study adds?What is already known on this subject Communication recovery from traumatic brain injury (TBI) is complex and multifaceted. The perceptions of individuals with TBI toward their communication recovery is largely unknown. To establish rehabilitation services that meet the needs of these individuals, we need to understand how they experience communication recovery.What this paper adds to existing knowledge Social communication interventions were perceived as a priority for intervention by individuals with TBI. Fatigue was identified as perceived barrier to communication recovery. Taking ownership over one's recovery process was revealed as a facilitator of recovery. Illness narratives were found to strengthen post‐injury identity over time.What are the potential or actual clinical implications of this work? Speech pathologists should prioritise social communication interventions and fatigue management for communication. Facilitating ownership of the recovery process and offering long‐term supports are key aspects of treatment. Supporting positive illness narratives as part of treatment may facilitate post‐injury identity construction.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Perceptions of communication recovery following traumatic brain injury: A qualitative investigation across 2 years

Elbourn

Brassel

Steel

et al. 2022

Intl J Lang & Comm Disor

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show abstract

“…Although there is a dearth of published literature specific to brain injury (i.e., stroke, traumatic or other non-traumatic brain injuries) during the current pandemic or previous public health crises, initial evidence indicates challenges and negative outcomes in community life and well-being related to the COVID-19 pandemic (5). Specifically, the pandemic rapidly worsened chronic sequelae such as physical, cognitive, mental, and behavioral, while also affecting personal finance, social support, and daily living (4, 5), which are all well documented as critical challenges for brain injury survivors (7)(8)(9). In fact, before the onset of the pandemic, the prevalence of isolation, loneliness, anxiety, depression, and other mental health issues was already higher among these individuals than in the general population (10).…”

Section: Introductionmentioning

confidence: 99%

Impact of the COVID-19 pandemic on community-based brain injury associations across Canada: a cross-sectional survey study

Salazar,

Bottari,

Lecours

et al. 2023

Front. Public Health

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BackgroundThe COVID-19 pandemic created new difficulties for people living with brain injury, their families, and caregivers while amplifying the challenges of community-based associations that support them. We aimed to understand the effects of the pandemic on clients who live with brain injury, as well as on the provision of community brain injury services/programs in Canada.MethodsOnline cross-sectional survey conducted in January 2022. Representatives of brain injury associations across Canada completed the 31 open- and closed-ended questions about meeting clients’ needs, addressing public health guidelines, and sustaining the association. Data were analyzed using descriptive statistics (close-ended questions) and qualitative content analysis (open-ended questions).ResultsOf the 45 key representatives from associations in Pacific/Western (40%), Central (56%), and Atlantic Canada (4%), the majority were paid executive directors (67%). Participants reported that the most frequent psychosocial challenges experienced by their clients during the pandemic were social isolation (98%), loneliness (96%), and anxiety (93%). To alleviate these challenges, associations implemented wellness checks and psychosocial support. Most respondents (91%) affirmed that clients faced multiple technological barriers, such as a lack of technological knowledge and financial resources for devices and/or internet. In the open-ended questions, twenty-nine (64%) associations reported providing clients with devices, technology training, and assistance. Regarding public health measures, thirty (67%) respondents reported that clients had challenges understanding and/or following public health guidelines. Forty-two associations (93%) provided tailored information to help clients understand and comply with public health measures. Although associations (67%) received pandemic-related funding from the Canadian government they still struggled with the association’s sustainability. Thirty-four (76%) lost funding or financial resources that prevented them from delivering programs or required the use of reserve funds to continue to do so. Only 56% reported receiving sufficient funding to address additional COVID-19-related expenses.ConclusionAlthough the pandemic added further challenges to the sustainability of brain injury associations across Canada, they quickly adapted services/programs to respond to the increasing and varied needs of clients, while complying with protective measures. To ensure community associations’ survival it is essential to aptly recognize the vital role played by these associations within the brain injury care continuum.

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“…De finder, at personer med EH kan have brug for identitetsrekonstruktion samt at social støtte er vigtig (Vaghela et al, 2021). Tilsvarende understreger et review af Nalder og kollegaer (2021) behovet for rehabiliteringsindsatser, der giver mulighed for aktivitet og social deltagelse samt støtter personen til at genfinde meningen med tilvaerelsen (Nalder et al, 2022). At finde mening og balance kraever således bl.a.…”

Section: Kapitel 3 Psykologiske Følger Efter Erhvervet Hjerneskadeunclassified

“…På baggrund af reviewet anbefalende de at rehabiliteringstilbud sikrede mulighed for deltagelse i aktivitet og social interaktion samt støtter til meningsdannelse og håb i rehabiliteringen. Rehabiliteringsprofessionelle skal således sikre positive livsoplevelser for ramte med EH, ligesom de bør understøtte empowerment i rehabiliterings situationer (Nalder et al, 2022).…”

Section: Historisk Perspektivunclassified

Den Psykologiske Dimension: Rehabiliteringspsykologisk intervention til personer med erhvervet hjerneskade

Thøgersen

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Har siden dimissionen som cand.psych. fra Aalborg Universitet, Klinik for Handicap og Rehabiliteringspsykologi i januar 2018, arbejdet som Rehabiliteringspsykolog på Neurocenter Østerskoven, Region Nordjylland. Her med fokus på at udvikle den psykologiske praksis, gennem mindre forskningsprojekter og klinisk praksis. Bl.a. ved forståelse terapeutiske samtaleforløb med personer ramt af erhvervet hjerneskade, pårørende og grupper. Påbegyndt ph.d.-projekt i 2020. Gennem ph.d.-projektet var det muligt i større skala at arbejde videre på udviklingen af en rehabiliteringspsykologisk indsats i forbindelse med rehabilitering efter erhvervet hjerneskade, samt systematisk at undersøge et terapeutisk interventionsprogram. Centralt har vaeret samspil mellem forskning og klinisk praksis. Medvirken til udvikling af rehabiliteringsområdet i Danmark gennem f.eks. rollen som Dansk Psykologforenings repraesentant i referencegruppen til arbejde med revidering af Hvidbogen om Rehabilitering i 2021-2022. Derudover aktiv i ViPRIS Videnscenter for Psykologisk Rehabilitering og Interdisciplinaert samarbejde.Saerligt forskning med fokus på ramte og pårørendes reaktioner og tilpasning efter kritiske livsbegivenheder og i forbindelse med rehabilitering, har vaeret centralt for min forskning. Saerligt aspekter som tab, sorg og eksistentielle forhold ved forandring optager mig. Samtidig med at krydsfeltet mellem forskning og praksis har vaeret afgørende, f.eks. i forhold til hvordan psykologien kan kvalificere rehabiliterende indsatser.

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Indicators of life success from the perspective of individuals with traumatic brain injury: a scoping review

Cited by 7 publications

References 110 publications

Perceptions of communication recovery following traumatic brain injury: A qualitative investigation across 2 years

Perceptions of communication recovery following traumatic brain injury: A qualitative investigation across 2 years

Impact of the COVID-19 pandemic on community-based brain injury associations across Canada: a cross-sectional survey study

Den Psykologiske Dimension: Rehabiliteringspsykologisk intervention til personer med erhvervet hjerneskade

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