Sentinel events associated with the transition from hospital to home: Experiences of individuals with traumatic brain injury and their family caregivers.

Emily Nalder (2011). Sentinel events associated with the transition from hospital to home: Experiences of individuals with traumatic brain injury and their family caregivers. PhD Thesis, School of Health & Rehabilitation Sciences, The University of Queensland.

       
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Author Emily Nalder
Thesis Title Sentinel events associated with the transition from hospital to home: Experiences of individuals with traumatic brain injury and their family caregivers.
School, Centre or Institute School of Health & Rehabilitation Sciences
Institution The University of Queensland
Publication date 2011-12
Thesis type PhD Thesis
Supervisor Associate Professor Jennifer Fleming
Dr Petrea Cornwell
Associate Professor Michele Foster
Total pages 367
Total colour pages 27
Total black and white pages 340
Language eng
Subjects 110321 Rehabilitation and Therapy (excl. Physiotherapy)
Abstract/Summary Background The transition arising as individuals with brain injury move from hospital to home is emerging as a distinct rehabilitation phase, and the beginning of community integration. Previous research has shown that individuals with traumatic brain injury (TBI) and their families have challenging experiences during this transition including reduced independence, relationship problems, caregiver strain, and reduced participation in meaningful activity. Life course theory is a paradigm used to understand how life events and societal changes influence transitions and the life course, and is therefore relevant to research investigating individual experiences during the transition phase following TBI. Research identifying key events which arise during the transition from hospital to home, and influence the overall experience for individuals with TBI and their caregivers is needed to understand the transition process and to inform service improvements during this phase. Research Aims Specific thesis aims were to 1) investigate the occurrence of sentinel events and other factors which influence the transition from hospital to home for individuals with TBI and their family caregivers; and 2) to investigate the experiences and perceptions of individuals with TBI and their family caregivers regarding the transition from hospital to home and the sentinel events occurring during this phase. Methodology This research used a sequential explanatory mixed methods design with two phases. Phase one was a prospective longitudinal cohort investigation. A sample of 127 individuals with TBI, and 83 caregivers completed questionnaires pre-discharge and then at 1, 3 and 6-months post-hospital discharge. Key outcome measures were a visual analogue scale measuring perceived transition success, and a sentinel events questionnaire developed for the thesis based on life course theory. Other measures were used to collect data on psychosocial integration, level of disability, emotional wellbeing, quality of life, environmental barriers, and caregiver strain. Mixed effect modelling identified factors associated with higher ratings of transition success and logistic regression identified factors related to the occurrence of sentinel events during the transition phase. Phase two, a qualitative investigation, involved semi structured in-depth interviews with 16 individuals with TBI and 10 family caregivers. The focus of the interviews was to understand the experiences of individuals with TBI and their family members during the transition phase, and interviews were guided by life course theory. The sample was purposefully selected from those involved in phase one based on data related to perceived transition success and occurrence of sentinel events. Data were analysed thematically using a Framework approach. Findings according to thesis aims The first thesis aim, to examine the sentinel events and other factors influencing transition, was addressed in phase one of the study. The most commonly reported events related to regaining independence (e.g., regaining independence at home or in use of transport). Least common (though still reported by 28% of individuals with TBI) was relationship breakdown. The sentinel events most influential with respect to transition success were 1) return to work, 2) returning to independent transport use, 3) changing living situation, 4) financial strain and 5) experiencing difficulty accessing therapy. Individuals with a more severe injury and lower levels of community integration were more likely to experience negative events in transition (e.g., financial strain). Conversely, those with a less severe injury were more likely to experience positive events (e.g., return to work). Level of community integration, quality of life and injury severity also influenced the perceptions of individuals with TBI regarding transition success. Higher stress levels and poorer community integration (of the individual with TBI) were related to lower perceptions of transition success for family caregivers. The second thesis aim was to examine the experiences and perceptions of individuals with TBI and their caregivers about transition. Qualitative findings indicated that the transition experience for individuals with TBI was characterised by a drive to return to a “normal life” and changes in their perspective on life. Normality was defined as returning to work or other meaningful activities, regaining independence, and maintaining important relationships. A changed life perspective was displayed by either altering life priorities orbeing forced to accept changes in life. The dominant experiences of transition for family caregivers were feeling the weight of the caring responsibility, and hoping the individual with TBI would regain a sense of normality. The two themes were linked as caregivers’ sense of responsibility stemmed from wanting to protect the individual and help them return to normal life. Conclusions and recommendations A synthesis of qualitative and quantitative findings highlighted the variation in individual experiences and the dynamic nature of the transition phase. There was no distinct end-point to the transition phase; instead it represented a period of the life course influenced by personal factors, environmental factors, and sentinel events. The complex and critical nature of the transition phase is highlighted by the the links between transition and adjustment to disability. Research into rehabilitation approaches (e.g., meaningful use of time) and models of service delivery targeting the transition phase is required to provide optimal supports for families during this critical life course transition
Keyword Traumatic brain injury (TBI)
Transition
Life course
Community integration
Sentinel event
Additional Notes Colour pages: 130, 239, 240, 244, 247, 248, 251, 311, 312, 313, 314, 315, 316, 317, 318, 319, 320, 321, 322, 323, 324, 325, 326, 327, 328, 329, 330 landscape pages: 94, 95, 96, 165, 169, 172, 191, 239, 240, 244, 247, 248, 251, 366, 367

 
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Created: Tue, 22 May 2012, 22:15:41 EST by Miss Emily Nalder on behalf of Library - Information Access Service