Lucy Knox

Long-term ability to interpret facial expression after traumatic brain injury and its relation to social integration

There is considerable evidence that individuals with traumatic brain injury (TBI) experience problems interpreting the emotional state of others. However, the functional implications of these changes have not been fully investigated. A study of 13 individuals with severe TBI and an equal number of matched controls found that TBI participants had significantly more difficulty interpreting facial expression and matching emotions to social situations. A significant relationship was also established between social integration and ability to interpret facial expression for TBI participants. These results support the inclusion of therapy targeting this area within rehabilitation programs for individuals with TBI.

Whose decision is it anyway? How clinicians support decision-making participation after acquired brain injury.

Abstract Purpose: To raise professional awareness of factors that may influence the support offered by clinicians to people with acquired brain injury (ABI), and to consider the potential implications of these factors in terms of post-injury rehabilitation and living. Method: A review of the literature was conducted to identify factors that determine how clinicians provide support and influence opportunities for individuals with ABI to participate in decision making across the rehabilitation continuum. Clinical case studies are used to highlight two specific issues: (1) hidden assumptions on the part of the practitioner, and (2) perceptions of risk operating in clinical practice. Results: There are a range of factors which may influence the decision-making support provided by clinicians and, ultimately, shape lifetime outcomes for individuals with ABI. A multidimensional framework may assist clinicians to identify relevant factors and consider their potential implications including those that influence how clinicians involved in supporting decision making approach this task. Conclusions: Participation in decision making is an undisputed human right and central to the provision of person-centred care. Further research is required to understand how clinical practice can maximise both opportunities and support for increased decision-making participation by individuals with ABI. Implications for Rehabilitation There is an increasing focus on the rights of all individuals to be supported to participate in decision making about their life. A number of changes associated with ABI mean that individuals with ABI will require support with decision making. Clinicians have a critical role in providing this support over the course of the rehabilitation continuum. Clinicians need to be aware of the range of factors that may influence the decision-making support they provide. A multidimensional framework may be used by clinicians to identify influences on the decision-making support they provide.

Factors that Underpin the Delivery of Effective Decision-making Support for People with Cognitive Disability

Over one million Australians have some form of cognitive impairment due to intellectual disability or acquired brain injury and require significant levels of support for decision-making. To date, the range and quality of support available has been poor, often tending toward undue paternalism, with deleterious consequences for the individuals sense of identity and quality of life. Efforts to rectify this situation have recently been championed by law reform commissions, which have focused on establishing new legal structures for support with decision-making. However, the crucial issue of how decision-making support is delivered in practice – in terms of quality and effectiveness – remains in urgent need of attention. The aim of this article is to describe four empirically based propositions that characterise effective decision-making support; orchestration by the primary supporter; commitment to person; support principles; and a repertoire of strategies that can be used flexibly depending on the type and ...

‘The biggest thing is trying to live for two people’: Spousal experiences of supporting decision-making participation for partners with TBI

Absrtract Primary objective: To understand how the spouses of individuals with severe TBI experience the process of supporting their partners with decision-making. Design: This study adopted a constructivist grounded theory approach, with data consisting of in-depth interviews conducted with spouses over a 12-month period. Data were analysed through an iterative process of open and focused coding, identification of emergent categories and exploration of relationships between categories. Participants: Participants were four spouses of individuals with severe TBI (with moderate–severe disability). Spouses had shared committed relationships (marriage or domestic partnerships) for at least 4 years at initial interview. Three spouses were in relationships that had commenced following injury. Main outcome and results: Two main themes emerged from the data. The first identified the saliency of the relational space in which decision-making took place. The second revealed the complex nature of decision-making within the spousal relationship. Conclusions: Spouses experience decision-making as a complex multi-stage process underpinned by a number of relational factors. Increased understanding of this process can guide health professionals in their provision of support for couples in exploring decision-making participation after injury.

“I won't be around forever”: Understanding the decision-making experiences of adults with severe TBI and their parents

There is growing recognition of the right of all individuals, including those with cognitive impairment, to make decisions about their own lives. However, little is known about how the process of decision making is experienced after severe traumatic brain injury (TBI). This study used constructivist grounded theory to explore processes used by adults with severe TBI and their parents in making decisions about life after injury. Data consisted of 18 individual, in-depth interviews with four dyads (consisting of an individual with severe TBI and his or her parent). The overlying construct emerging from the data was a process of reimagining the future, which influenced how participants approached and participated in making decisions. In line with this construct, two central themes described processes of joint decision making within parent–adult child relationships after severe TBI over time: (1) making decisions with parental support, and (2) reducing parental involvement. These findings emphasise the complexity of supporting decision making after injury, and illustrate that both parents and their adult children with TBI use explicit and implicit strategies to facilitate increased participation in making decisions. This study also underscores the need for brain injury clinicians to consider the needs of parents who find themselves in this role.

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

Abstract 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. Implications for Rehabilitation Previous 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.

Becoming a decision-making supporter for someone with acquired cognitive disability following traumatic brain injury

Despite an increased awareness of societys obligation to ensure that people with cognitive disabilities have access to decision-making support, little is known about how this support should be provided. For people with traumatic brain injury, informal support mechanisms may provide the primary means of support but there is limited understanding of how this aids participation. As part of a larger project using constructivist grounded theory to explore processes used by adults with severe traumatic brain injury in making decisions after injury, the authors explored a single-case study, presented in this article. In particular, the study aimed to build an understanding of the evolution of decision-making support over time from multiple perspectives. Data consisted of seven in-depth, individual interviews with three participants: the central participant, Beau, and two participants whom he nominated as his decision-making supporters. Analysis of the data revealed several key themes relating to both the nature...

A scoping review of the nature and outcomes of extended rehabilitation programmes after very severe brain injury

ABSTRACT Primary Objective: Many adults with very severe acquired brain injury (ABI) do not receive adequate rehabilitation, limiting their recovery and leading to admission to inappropriate living environments. The aim of this scoping review was to map the existing literature relating to the nature and outcomes of rehabilitation programmes for adults experiencing prolonged recovery after very severe ABI. Design: A comprehensive scoping of the literature was undertaken, including systematic searching of databases, grey literature, and hand searching. Eligible studies had to report on (a) extended rehabilitation for (b) adults with very severe ABI and complex support needs and describe (c) the outcomes of the intervention. Results: From an initial total of 17,829 citations, 18 records were retained for review. Data extraction focused on (i) participant characteristics, (ii) programme information, and (iii) programme outcomes. Studies were characterised by substantial diversity. However, findings suggested that extended rehabilitation assisted participants to live more independently in more home-like environments and contributed towards significant savings in their lifetime care costs. Conclusions: Extended specialised rehabilitation can maximise the independence and participation of adults with very severe ABI. Advocacy is required to ensure that adults with very severe injuries have access to individually tailored, non-time-limited intervention programmes.

Effectiveness of Communication-specific Coping Intervention for adults with traumatic brain injury: preliminary results

ABSTRACT People with traumatic brain injury (TBI) describe everyday interactions as a long-term challenge frequently associated with ongoing stress. Communication-specific Coping Intervention (CommCope-I) is a new treatment developed to target coping in the context of communication breakdown. The intervention incorporates principles of cognitive behavioural therapy, self-coaching and context-sensitive social communication therapy. The purpose of this study was to examine the effectiveness of CommCope-I in a group of adults with severe TBI and ongoing functional communication difficulties. Participants were 13 adults with severe TBI (GCS = 3–8; mean age = 35.2 years; mean time post-injury = 7.6 years). The project involved three phases: (1) Control/pre-intervention wait phase (multiple assessments), (2) Treatment (6 weeks), and (3) Follow-up (12 weeks). Repeated measures ANOVA with planned pairwise comparisons were used to test the significance of change. Intervention elicited statistically significant improvements in communication-specific coping, functional communication and stress that were maintained for three months. Improved use of communication-specific coping strategies was evident in clinician blind ratings. Clients reported significant reduction in stress at the end of treatment and one and three months later. This intervention provides a promising means of improving communication-specific coping and reducing communication dysfunction and its negative consequences for people with TBI.