A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers

Primary Objective: To explore the transition experiences from hospital to home of a purposive sample of individuals with acquired brain injury (ABI). Research Design: Phenomenological, qualitative design. Methods and Procedures: Semi-structured interviews were conducted with 13 individuals with ABI (mean time since discharge = 15.2 months) and 11 family caregivers. Each interview was recorded, transcribed verbatim and then inductively analyzed. Results: Through the inductive analysis process, a summary coding framework was developed that included that following eight main categories: the hospital experience; the transition process; the role of family caregivers; post-discharge services; friendship networks and community involvement; meaningful activities and time management; physical and psychological wellbeing; and barriers and facilitators. Conclusions: The results of the study provide valuable insights into the lived experiences of participants and provide evidence to support the existence of a distinct transition phase within the ABI rehabilitation continuum; additional to and closely associated with the acute, post-acute and community integration phases.

[1]  J. Fleming,et al.  The transition from hospital to home for individuals with acquired brain injury: A literature review and research recommendations , 2008, Disability and rehabilitation.

[2]  J. Fleming,et al.  The Development of Self-Awareness and Relationship to Emotional Functioning During Early Community Reintegration After Traumatic Brain Injury , 2006, Brain Impairment.

[3]  J. Ponsford,et al.  Coping and Emotional Adjustment Following Traumatic Brain Injury , 2006, The Journal of head trauma rehabilitation.

[4]  J. Ponsford,et al.  Evaluation of a coping skills group following traumatic brain injury , 2006, Brain injury.

[5]  B. Swaine,et al.  The experiences of individuals with a traumatic brain injury, families, physicians and health professionals regarding care provided throughout the continuum , 2005, Brain injury.

[6]  C. Mateer,et al.  Awareness, Emotional Adjustment, and Injury Severity in Postacute Brain Injury , 2005, The Journal of head trauma rehabilitation.

[7]  A. Olofsson,et al.  ‘If only I manage to get home I'll get better’-Interviews with stroke patients after emergency stay in hospital on their experiences and needs , 2005, Clinical rehabilitation.

[8]  E. Frank,et al.  Factors Predicting Rehabilitative Service Provision in Adults with Traumatic Brain Injury , 2005 .

[9]  Jannah D Oppermann Interpreting the meaning individuals ascribe to returning to work after traumatic brain injury: a qualitative approach , 2004, Brain injury.

[10]  J. Gubrium,et al.  The experience of time in the transition from hospital to home following stroke. , 2004, Journal of rehabilitation research and development.

[11]  G. Simpson,et al.  Post-acute Rehabilitation for People With Traumatic Brain Injury: A Model Description and Evaluation of the Liverpool Hospital Transitional Living Program , 2004, Brain Impairment.

[12]  S. Kelsey,et al.  Long term outcomes after moderate to severe traumatic brain injury , 2004, Disability and rehabilitation.

[13]  C. Cott,et al.  Client-centred rehabilitation: client perspectives , 2004, Disability and rehabilitation.

[14]  R. Tate Assessing support needs for people with traumatic brain injury: the care and needs scale (CANS) , 2004, Brain injury.

[15]  Colin Sharp Qualitative Research and Evaluation Methods (3rd ed.) , 2003 .

[16]  R. Robinson,et al.  Mood disorders following traumatic brain injury , 2003, NeuroRehabilitation.

[17]  A. Conneeley Quality of Life and Traumatic Brain Injury: A One-Year Longitudinal Qualitative Study , 2003 .

[18]  J. Olver,et al.  Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided , 2003, Brain injury.

[19]  G. Whiteneck,et al.  Understanding outcomes based on the post-acute hospitalization pathways followed by persons with traumatic brain injury , 2003, Brain injury.

[20]  A. Conneeley Social Integration following Traumatic Brain Injury and Rehabilitation , 2002 .

[21]  S. Dikmen,et al.  Significant Other Burden and Factors Related to it in Traumatic Brain Injury , 2002, Journal of clinical and experimental neuropsychology.

[22]  J. Sleigh,et al.  Caregiver Burden During the Year Following Severe Traumatic Brain Injury , 2002, Journal of clinical and experimental neuropsychology.

[23]  B. H. Forchhammer,et al.  Follow-up services for stroke survivors after hospital discharge-a randomized control study , 2002, Clinical rehabilitation.

[24]  R. King,et al.  Adaptation to Stroke: A Longitudinal Study of Depressive Symptoms, Physical Health, and Coping Process , 2002, Topics in stroke rehabilitation.

[25]  B. Paterson,et al.  Critical Issues in Interviewing People with Traumatic Brain Injury , 2002, Qualitative health research.

[26]  J. Paterson,et al.  Adults with Acquired Brain Injury: Perceptions of Their Social World , 2002 .

[27]  Dan Hoofien, Assaf Gilboa, Eli Vakil, Peter J. Don,et al.  Traumatic brain injury (TBI) 10?20 years later: a comprehensive outcome study of psychiatric symptomatology, cognitive abilities and psychosocial functioning , 2001 .

[28]  D. Alfano,et al.  Depression, Social Support, and Family Coping Following Traumatic Brain Injury , 2000 .

[29]  G. Broe,et al.  Psychosocial adjustment after traumatic brain injury: what are the important variables? , 1999, Psychological Medicine.

[30]  S. Deb,et al.  Rate of psychiatric illness 1 year after traumatic brain injury. , 1999, The American journal of psychiatry.

[31]  C. Fraser The experience of transition for a daughter caregiver of a stroke survivor. , 1999, The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses.

[32]  A. Tennant,et al.  Mood disorders following traumatic brain injury: identifying the extent of the problem and the people at risk. , 1998, Brain injury.

[33]  C. Granger,et al.  Outcomes in the first 5 years after traumatic brain injury. , 1998, Archives of physical medicine and rehabilitation.

[34]  J. Fleming,et al.  The Development of Insight following Severe Traumatic Brain Injury: Three Case Studies , 1997 .

[35]  S. Arndt,et al.  Comparison between acute- and delayed-onset depression following traumatic brain injury. , 1994, The Journal of neuropsychiatry and clinical neurosciences.

[36]  T. Glass,et al.  The quality and quantity of social support: stroke recovery as psycho-social transition. , 1992, Social science & medicine.

[37]  B. C. Robinson Validation of a Caregiver Strain Index. , 1983, Journal of gerontology.

[38]  M Rappaport,et al.  Disability rating scale for severe head trauma: coma to community. , 1982, Archives of physical medicine and rehabilitation.

[39]  J. Connell,et al.  A comparison of adjustment and self-awareness in adults after traumatic brain injury and spinal cord injury: The transition from hospital to community , 2001 .

[40]  P J Donovick,et al.  Traumatic brain injury (TBI) 10-20 years later: a comprehensive outcome study of psychiatric symptomatology, cognitive abilities and psychosocial functioning. , 2001, Brain injury.

[41]  Lyn Richards,et al.  Using NVIVO in Qualitative Research , 1999 .

[42]  P. Minnes,et al.  Transitions to independent living after ABI. , 1999, Brain injury.

[43]  J. Sleigh,et al.  Caregiver burden at 1 year following severe traumatic brain injury. , 1998, Brain injury.

[44]  G. Goldberg,et al.  Stroke Transition after Inpatient Rehabilitation. , 1997, Topics in stroke rehabilitation.

[45]  Louis M. Smith,et al.  Family Support Programs and Rehabilitation , 1995, Critical Issues in Neuropsychology.

[46]  P. Minnes,et al.  Stability of functional outcomes following transitional living programme participation: 3-year follow-up. , 1994, Brain injury.

[47]  Nancy K. Schlossberg,et al.  Counseling Adults in Transition: Linking Practice with Theory , 1984 .

[48]  M. Patton Qualitative research and evaluation methods , 1980 .