The experience of surviving traumatic brain injury

Chamberlain, Diane

doi:10.1111/j.1365-2648.2006.03840.x

Cited by 70 publications

(78 citation statements)

References 21 publications

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“…[7,49,50] This experience may be directly related to injury-related impairments, including experience of "loss of connection between one's mind and body", [51] which negatively impact on an individual's sense of agency. [8,39,42,46] These findings point to the potential role of decision-making participation in providing a means to overcome the loss of autonomy described by adults with TBI.…”

Section: Exploring Decision-making Participation In the Context Of Thmentioning

confidence: 92%

“…[31] A consistent finding across the literature is that people with TBI are at risk of having reduced participation in their own life decisions. [8,[32][33][34] It has been argued that this is, at least in part, due to the failure of others to recognize the ability of individuals with a disability to make decisions about their lives. [35] Self-conceptualization after TBI There is a growing body of literature investigating the self after TBI.…”

Section: The Impact Of Tbi On Decision Makingmentioning

confidence: 99%

“…[3] There is a growing consensus that major and unexpected life events, such as traumatic brain injury (TBI), resonate in one's personal narrative. [4][5][6][7][8] The subsequent changes in an individual's self-concept are then reflected in the decisions they make and act upon. This study explores the interface between the experience of decision making and the process of self-conceptualization after TBI.…”

Section: Introductionmentioning

confidence: 99%

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“I’ve never been a yes person”: Decision-making participation and self-conceptualization after severe traumatic brain injury

Knox

Douglas

Bigby

2016

Disability and Rehabilitation

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Purpose: Although adults who sustain a severe traumatic brain injury (TBI) require support to make decisions in their lives, little is known about their experience of this process. The aim of this study was to explore how participation in decision making contributes to self-conceptualization in adults with severe TBI. Method: We used constructivist grounded theory methods. Data included 20 in-depth interviews with adults with severe TBI. Through a process of constant comparison, analysis involved open and focused coding until clear categories emerged and data saturation was achieved. Results: Self-conceptualization emerged as a complex and multifaceted process, as individuals with TBI aimed to reestablish a sense of autonomy. We describe a recursive relationship in which decision-making participation assists the dynamic construction of self, and self-concept contributes to the experience of making decisions. The role of an individual's social support network in acting as a bridge between participation and self-conceptualization is presented. Conclusions: Findings emphasize that contributing to decisions about one's own goals across a range of life areas can reinforce a positive self-concept. It is vital that supporters understand that participation in decision making provides a pathway to conceptualizing self and aim to maximize the person's participation in the decision-making process. ä IMPLICATIONS FOR REHABILITATIONPrevious research has identified that the experience of sustaining TBI has a significant impact on a person's conceptualization of self. This study identified that decision-making experiences play an important role in the ongoing process of self-conceptualization after injury. Decision-making experiences can reinforce a person's self-concept or lead them to revise (positively or negatively) their sense of self. By maximizing the person's decision-making participation, those around them can support them to develop positive self-attributes and contribute to shaping their future goals. ARTICLE HISTORY

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Section: Exploring Decision-making Participation In the Context Of Thmentioning

confidence: 92%

Section: The Impact Of Tbi On Decision Makingmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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“I’ve never been a yes person”: Decision-making participation and self-conceptualization after severe traumatic brain injury

Knox

Douglas

Bigby

2016

Disability and Rehabilitation

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“…In the U.S. each year, 1. Brain injury can affect many aspects of a survivor's life, from cognitive functioning, to emotional, psychosocial, and physical well-being, selfesteem, ability to work and participate in the community, socio-economic status, and perception of self (Chamberlain, 2006;NIH, 1998). Any brain injury, even when diagnosed as "mild," indicating that any loss of consciousness was brief, may have serious, long-term consequences.…”

Section: Applying Fair Process To Care For Brain Injury Patients: Encmentioning

confidence: 99%

Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care

Lorenz

Chilingerian

2011

JoVE

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The Institute of Medicine has targeted patient-centeredness as an important area of quality improvement. A major dimension of patientcenteredness is respect for patient's values, preferences, and expressed needs. Yet specific approaches to gaining this understanding and translating it to quality care in the clinical setting are lacking. From a patient perspective quality is not a simple concept but is best understood in terms of five dimensions: technical outcomes; decision-making efficiency; amenities and convenience; information and emotional support; and overall patient satisfaction. Failure to consider quality from this five-pronged perspective results in a focus on medical outcomes, without considering the processes central to quality from the patient's perspective and vital to achieving good outcomes. In this paper, we argue for applying the concept of fair process in clinical settings. Fair process involves using a collaborative approach to exploring diagnostic issues and treatments with patients, explaining the rationale for decisions, setting expectations about roles and responsibilities, and implementing a core plan and ongoing evaluation. Fair process opens the door to bringing patient expertise into the clinical setting and the work of developing health care goals and strategies. This paper provides a step by step illustration of an innovative visual approach, called photovoice or photo-elicitation, to achieve fair process in clinical work with acquired brain injury survivors and others living with chronic health conditions. Applying this visual tool and methodology in the clinical setting will enhance patient-provider communication; engage patients as partners in identifying challenges, strengths, goals, and strategies; and support evaluation of progress over time. Asking patients to bring visuals of their lives into the clinical interaction can help to illuminate gaps in clinical knowledge, forge better therapeutic relationships with patients living with chronic conditions such as brain injury, and identify patient-centered goals and possibilities for healing. The process illustrated here can be used by clinicians, (primary care physicians, rehabilitation therapists, neurologists, neuropsychologists, psychologists, and others) working with people living with chronic conditions such as acquired brain injury, mental illness, physical disabilities, HIV/AIDS, substance abuse, or post-traumatic stress, and by leaders of support groups for the types of patients described above and their family members or caregivers.

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“…Research surrounding family caregivers' hopes for ABI recovery found the potential for a crisis is more likely when congruency between hopes of recovery and reality are reduced (Gebhardt, Gebhardt, McGehee, Grindel, & Testani-Dufour, 2012). Hope appeared to be salient for coping and a general optimism for recovery and a return to normal life for persons with ABI and their family members (Chamberlain, 2006;Engstrom & Soderberg, 2011;Nalder et al, 2013;Shotton, Simpson, & Smith, 2007). It is essential that healthcare professionals could balance the maintenance of hope with the consideration of the possibility of either their relative not being able to drive permanently or the interruption to driving could last for a long duration .…”

Section: Discussionmentioning

confidence: 96%

Family members’ needs and experiences related to driving disruption following acquired brain injury

Liang¹

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Family members often assume the caregiving role after an individual sustains an acquired brain injury (ABI). A mandated period of driving disruption following an ABI means that individuals will often rely heavily on family members for transport and emotional support.However, research on driving disruption has largely focused on the impact, assessment and rehabilitation of the individual with ABI, with little attention given to family members. In order to develop an understanding for approaches to support family members better, this thesis aimed to explore the needs and experiences of family members during driving disruption following an ABI.The first aim of the thesis was to gain a broader understanding of the issue by conducting a scoping review of the literature on family members' needs and experiences during driving disruption across all health conditions. The scoping review found that driving disruption is a stressful and complex issue with communication and emotional implications for family members. The review highlighted differences in experiences according to health condition, permanence of driving disruption and nature of the caregiver occupation, and identified the need for further research on the issue of driving disruption for family members of individuals with ABI.A prospective, mixed methods, longitudinal study, with a phenomenological approach was conducted with family members of individuals with ABI who were experiencing driving disruption. Recruitment was stratified according to time post-ABI to gain a range of perspectives. Data were collected from 15 family members at three time-points: recruitment to study, 3 and 6 months later. Self-report questionnaires measuring family members' quality of life and well-being were administered at the first time-point, and semistructured interviews were conducted at each time-point. All interviews incorporated the use of a map to elicit qualitative and quantitative data about family members' current travel patterns as a result of driving disruption. The data were analysed using different approaches in a series of four studies.The first two studies aimed to gain an in-depth understanding about the experiences of family members of individuals experiencing driving disruption due to ABI across the recovery continuum. Both studies examined the mixed methods cross-sectional data from the first time-point. The first study explored the differences in family members' experiences iii at the early (<1 year post-ABI) and later stages (>1 year post-ABI) using a mixed methods, phenomenological approach. Family members in the later group reported more challenges with greater intensity. These challenges included changes in everyday activities, the impact on their emotions, consequences for the whole family, and effects on physical health. The later group had lower ratings of health and well-being, and higher caregiver strain.The second study investigated the specific changes family members experienced in everyday activities with a focus on the impact of driving disru...

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The experience of surviving traumatic brain injury

Cited by 70 publications

References 21 publications

“I’ve never been a yes person”: Decision-making participation and self-conceptualization after severe traumatic brain injury

“I’ve never been a yes person”: Decision-making participation and self-conceptualization after severe traumatic brain injury

Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care

Family members’ needs and experiences related to driving disruption following acquired brain injury

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