Family experiences up to seven years after a severe traumatic brain injury–family interviews

Stenberg, Maud; Stålnacke, Britt-Marie; Saveman, Britt‐Inger

doi:10.1080/09638288.2020.1774668

Cited by 11 publications

(8 citation statements)

References 53 publications

(68 reference statements)

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“…It is not until relatives are 'settled' that family members can relinquish the overwhelming responsibility they embraced on the day their relative was injured and start to step back into the usual flow of life again. These reflections support the work of Stenberg et al (2020) who also report family members entering the 'unknown' with their relative and working through everyday life to create a future together. Companion-like relationships will not provide all the answers but provides the family member with recognition, acceptance, and most importantly, human connection and support in connecting between the parallel world and others in the usual world.…”

Section: Opportunities and Barriersmentioning

confidence: 55%

Humanising health and social care: What do family members of people with a severe acquired brain injury value most in service provision

Holloway¹,

Ellis‐Hill

2022

Brain Impairment

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Introduction: Family members living with relatives with severe acquired brain injury (ABI) face many challenges. Although this is recognised, service provision in the UK is poor and needs development. Method: In order to support innovative service delivery for family members, we reflect on the research carried out by the first author using a new perspective – a lifeworld humanising approach in order to consider (a) the dehumanising existential challenges facing family members of people living with severe ABI and (b) what family members most value in service delivery presented in humanising terms. Findings: Following ABI, family members may enter a parallel lifeworld (feeling separate from ‘usual’ life as it flows by) and face fundamental existential challenges of isolation, loss of agency, dislocation, loss of meaning and loss of personal journey. Family members have reported that service providers who are highly valued are those who act as ‘expert companions’. This role involves supporting families in some, if not all of the following (a) reaching across into the lifeworld of the family member and appreciating and validating what they are facing, (b) helping them make sense of their situation in terms which are meaningful to them and which they can explain to others, (c) through ABI expertise, supporting their relative through knowing their interests and needs and adapting the environment to suit these to help their relative to ‘settle’ and flourish, (d) supporting family members to share their life experiences – developing safe and trusting relationships, (e) having a humane, positive, creative and for some, a humorous approach, (f) being responsive to changing situations, (g) being available to call during times of worry or crisis and (h) help link with others and helpful networks. Discussion: It is suggested that the role and approach of companion may help family members regain some sense of their own life and their well-being.

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Section: Opportunities and Barriersmentioning

confidence: 55%

Humanising health and social care: What do family members of people with a severe acquired brain injury value most in service provision

Holloway¹,

Ellis‐Hill

2022

Brain Impairment

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“…As a consequence, complex and overwhelming emotions (e.g., anger, frustration, fear, grief, shame) were common in the months and years following injury (Muenchberger et al, 2008; Soeker et al, 2012). Individuals with TBI also described coping with these emotions in ways that inhibited their recovery, including with drugs/alcohol that resulted in new-onset addiction, and a reduced ability to adhere to medical regimens (Self et al, 2013; Stenberg et al, 2020).…”

Section: Resultsmentioning

confidence: 99%

“…Individuals with TBI also described a fear of burdening others, which led to their withdrawal from social activities and increased loneliness and social isolation (Mumbower et al, 2019). Over time, they noticed that people in their lives were less invested in their relationship (McPherson et al, 2018) and had negative reactions to the symptoms they experienced after TBI (e.g., irritability, memory deficits, physical impairments) (McPherson et al, 2018; Stenberg et al, 2020). In addition to challenges with established relationships, individuals with TBI described having difficulties forming new friendships (Salas et al, 2018) They attributed this challenge to their TBI symptoms and a lack of access to social activities and peer groups with similar experiences (Herrmann & Deatrick, 2019).…”

Section: Resultsmentioning

confidence: 99%

“…They also described challenges finding and accessing reliable information on the strategies and support resources that would enhance their resilience, help them prepare for the future, and navigate life transitions (Adams & Dahdah, 2016; Chouliara & Lincoln, 2016; Herrmann & Deatrick, 2019). While psychosocial support was cited as critical to promote resilience, those that had access to psychosocial resources were dissatisfied with existing services and cited unmet needs to address their specific challenges (e.g., identity issues for younger participants; return to school) (Graff et al, 2018; Mbakile-Mahlanza et al, 2015; Stenberg et al, 2020). Participants across studies experienced limits of ongoing rehabilitation support.…”

Section: Resultsmentioning

confidence: 99%

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A meta-synthesis of individual, interpersonal, and systemic factors impacting resilience after traumatic brain injury.

Bannon¹,

Fishbein²,

Lovette³

et al. 2022

Rehabilitation Psychology

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Purpose/Objective: Traumatic brain injuries (TBIs) are increasingly common and a major cause of death and long-term disability. Many individuals experience chronic stressors and adverse health outcomes, emphasizing the importance of cultivating resilience, (defined herein as individual, social, and systemic components engaged in response to the stressors that allow individuals to “bounce back,” or move forward adaptively after TBI). Patients’ perceptions of factors influencing resilience are critical to guide interventions that meet their needs. Here we offer the first metasynthesis of factors influencing resilience after TBI using a Social Ecological model framework. Research Methods/Design: We preregistered our metasynthesis on PROSPERO (CRD42021233975) and followed PRISMA guidelines. We searched 4 electronic databases for qualitative studies from inception up until June 2021. We included qualitative studies detailing perspectives of individuals with a history of moderate-severe TBI. We excluded case studies and systematic reviews. After removal of duplicates, we identified 124 articles for screening. We reviewed 49 articles for full text eligibility and included 38 studies. We extracted study characteristics and data (e.g., author interpretations and relevant quotes) relating to factors influencing resilience. Results: We synthesized findings using a Social Ecological model framework to guide thematic analysis. Persons with TBI identified barriers and facilitators to resilience at individual (e.g., physical and cognitive challenges, coping behaviors), interpersonal, (e.g., stigma and isolation) and systemic (e.g., access to resources, rehabilitation support) levels. Conclusions/Implications: Considering multifaceted factors at individual, interpersonal and systemic levels in clinical, research, and policy-setting contexts is important for cultivating resilience and optimizing recovery after TBI.

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“…Friends withdrew and sometimes their family members too, even if the family was reported to be helpful for adaptation and well-being. In other studies, STBI persons with more severe residual conditions described difficulties adapting to the new situation and highlighted the importance of having a family, close relationships and access to service and rehabilitation [ 58 ] and that feeling self-worth and maintaining self-confidence are important for well-being [ 59 ]. Severe disability is known to be related to dissatisfaction with health [ 28 ].…”

Section: Discussionmentioning

confidence: 99%

Health and Well-Being of Persons of Working Age up to Seven Years after Severe Traumatic Brain Injury in Northern Sweden: A Mixed Method Study

Stenberg

Stålnacke

Saveman

2022

JCM

Self Cite

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Purpose: To explore the health and well-being of persons seven years after severe traumatic brain injury (STBI). Material and methods: Follow-up of 21 persons 1 and 7 years after STBI using surveys for functional outcome, anxiety/depression, health and mental fatigue. Interviews were conducted and analysed using qualitative content analysis. Convergent parallel mixed method then merged and analysed the results into an overall interpretation. Results: Good recovery, high functional outcome and overall good health were relatively unchanged between 1 and 7 years. Well-being was a result of adaptation to a recovered or changed life situation. Persons with good recovery had moved on in life. Persons with moderate disability self-estimated their health as good recovery but reported poorer well-being. For persons with severe disability, adaptation was an ongoing process and health and well-being were low. Only a few persons reported anxiety and depression. They had poorer health but nevertheless reported well-being. Persons with moderate and severe mental fatigue had low functional outcomes and overall health and none of them reported well-being. Conclusions: The life of a person who has suffered STBI is still affected to a lesser or greater degree several years after injury due to acceptance of a recovered or changed life situation. Further studies are needed on how health and well-being can be improved after STBI in the long-term perspective.

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Family experiences up to seven years after a severe traumatic brain injury–family interviews

Abstract: Saveman (2020): Family experiences up to seven years after a severe traumatic brain injury-family interviews, Disability and Rehabilitation,

Cited by 11 publications

References 53 publications

Humanising health and social care: What do family members of people with a severe acquired brain injury value most in service provision

Humanising health and social care: What do family members of people with a severe acquired brain injury value most in service provision

A meta-synthesis of individual, interpersonal, and systemic factors impacting resilience after traumatic brain injury.

Health and Well-Being of Persons of Working Age up to Seven Years after Severe Traumatic Brain Injury in Northern Sweden: A Mixed Method Study

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