Highlights
- •Feelings of loss are common in caregivers of persons with traumatic brain injury.
- •Two new self-report measures of caregiver feelings of loss were developed.
- •These self-report measures can help identify feelings of entrapment in caregivers.
Abstract
Objective
To develop new patient-reported outcome (PRO) measures to better understand feelings
of loss in caregivers of individuals with traumatic brain injury (TBI).
Design
Cross-sectional survey study.
Setting
Three TBI Model Systems rehabilitation hospitals, an academic medical center, and
a military medical treatment facility.
Participants
Caregivers (N=560) of civilians with TBI (n=344) or service members/veterans (SMVs)
with TBI (n=216).
Interventions
Not applicable.
Main Outcome Measures
Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Feelings of Loss-Self
and TBI-CareQOL Feelings of Loss-Person with Traumatic Brain Injury item banks.
Results
While the initial exploratory and confirmatory factor analyses of the feelings of
loss item pool (98 items) potentially supported a unidimensional set of items, further
analysis indicated 2 different factors: Feelings of Loss-Self (43 items) and Feelings
of Loss-Person with TBI (20 items). For Feelings of Loss-Self, an additional 13 items
were deleted due to item-response theory-based item misfit; the remaining 30 items
had good overall model fit (comparative fit index [CFI]=0.96, Tucker-Lewis index [TLI]=.96,
root mean squared error of approximation [RMSEA]=.10). For Feelings of Loss-Other,
1 additional item was deleted due to an associated high correlated error modification
index value; the final 19 items evidenced good overall model fit (CFI=0.97, TLI=.97,
RMSEA=.095). The final item banks were developed to be administered as either a Computer
Adaptive Test (CAT) or a short-form (SF). Clinical experts approved the content of
the 6-item SFs of the 2 measures (3-week test-retest was r=.87 for Feelings of Loss-Self and r=.85 for Feelings of Loss-Person with TBI).
Conclusions
The findings from this study resulted in the development of 2 new PROs to assess feelings
of loss in caregivers of individuals with TBI; TBI-CareQOL Feelings of Loss-Self and
TBI-CareQOL Feelings of Loss-Person with TBI. Good psychometric properties were established
and an SF was developed for ease of use in clinical situations. Additional research
is needed to determine concurrent and predictive validity of these measures in the
psychological treatment of those caring for persons with TBI.
Keywords
List of abbreviations:
CAT (Computer Adaptive Test), CTT (classical test theory), CFA (confirmatory factor analysis), CFI (comparative fit index), DIF (differential item functioning), EFA (exploratory factor analysis), HRQOL (health-related quality of life), IRT (Item Response Theory), PRO (patient-reported outcome), PROMIS (Patient-Reported Outcomes Measurement Information System), RMSEA (root mean squared error of approximation), SF (short form), SMV (service member/veteran), TBI (traumatic brain injury), TBI-CareQOL (Traumatic Brain Injury Caregiver Quality of Life), TLI (Tucker-Lewis index)To read this article in full you will need to make a payment
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References
- Traumatic brain injury-related hospital discharges. Results from a 14-state surveillance system, 1997.MMWR Surveill Summ. 2003; 52: 1-20
- DoD worldwide numbers for TBI.(Available at:) (Accessed February 17, 2015)
- Trends in death associated with traumatic brain injury, 1979 through 1992. Success and failure.JAMA. 1995; 273: 1778-1780
- Epidemiology of traumatic brain injury.in: Zasler N.D. Katz D.I. Zafonte R.D. Brain injury medicine: principles and practice. 2nd ed. Demos, New York2007: 373-405
- US population estimates of health and social outcomes 5 years after rehabilitation for traumatic brain injury.J Head Trauma Rehabil. 2014; 29: E1-E9
- Ten-year employment patterns of working age individuals after moderate to severe traumatic brain injury: a national institute on disability and rehabilitation research traumatic brain injury model systems study.Arch Phys Med Rehabil. 2015; 96: 2128-2136
- Long-term employment outcomes following traumatic brain injury and orthopaedic trauma: a ten-year prospective study.J Rehabil Med. 2015; 47: 932-940
- A comprehensive picture of 4-year outcome of severe brain injuries. Results from the PariS-TBI study.Ann Phys Rehabil Med. 2016; 59: 100-106
- Stress and coping among families of patients with traumatic brain injury: a review of the literature.J Clinical Nurs. 2005; 14: 1004-1012
- The adversarial alliance: developing therapeutic relationships between families and the team in brain injury rehabilitation.Brain Inj. 1993; 7: 45-51
- Relationship of family functioning to progress in a post-acute rehabilitation programme following traumatic brain injury.Brain Inj. 2002; 16: 649-657
- Depression, social support, and family coping following traumatic brain injury.Brain Cognition. 2000; 44: 45-49
- Impact of traumatic brain damage on family dynamics and functioning: a review.Brain Inj. 1989; 3: 219-233
- Relationship of caregiver and family functioning to participation outcomes after postacute rehabilitation for traumatic brain injury: a multicenter investigation.Arch Phys Med Rehabil. 2012; 93: 842-848
- Relationship of preinjury caregiver and family functioning to community integration in adults with traumatic brain injury.Arch Phys Med Rehabil. 2010; 91: 1542-1550
- Effects of family and caregiver psychosocial functioning on outcomes in persons with traumatic brain injury.J Head Trauma Rehabil. 2011; 26: 20-29
- The relationship between caregiver burden and TBI survivors' cognition and functional ability after discharge.Rehabil Nurs. 1998; 23: 252-257
- Caring for our wounded warriors: a qualitative examination of health-related quality of life in caregivers of individuals with military-related traumatic brain injury.J Rehabil Res Dev. 2016; 53: 669-680
- Health-related quality of life in caregivers of individuals with traumatic brain injury: development of a conceptual model.Arch Phys Med Rehabil. 2015; 96: 105-113
- Caregiver burden at 1 year following severe traumatic brain injury.Brain Inj. 1998; 12: 1045-1059
- Caregiving and the stress process: an overview of concepts and their measures.Gerontologist. 1990; 30: 583-594
- A comprehensive, stage-sensitive model of grief in dementia caregiving.Gerontologist. 2001; 41: 658-670
- Ambiguous Loss.Harvard University Press, Cambridge, MA1999
- Ambiguous loss from chronic physical illness: clinical interventions with individuals, couples, and families.J Clin Psychol. 2002; 58: 1351-1360
- Are they grieving? A qualitative analysis examining grief in caregivers of individuals with Alzheimer's disease.Soc Work Health Care. 2003; 37: 35-53
- Emotional experience in patients with advanced Alzheimer's disease from the perspective of families, professional caregivers, physicians, and scientists.Aging Ment Health. 2018; 22: 316-322
- Experience of companionship among family caregivers of persons with dementia: a qualitative study.Dementia (London). 2016;
- The emotional well-being of young people having a parent with younger onset dementia.Dementia (London). 2016; 15: 609-628
- The experience of high levels of grief in caregivers of persons with Alzheimer's disease and related dementia.Death Stud. 2008; 32: 495-523
- Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis.Am J Alzheimers Dis Other Demen. 2007; 22: 516-527
- Caring for loved ones with frontotemporal degeneration: the lived experiences of spouses.Geriatr Nurs. 2013; 34: 302-306
- Caregivers of persons with Alzheimer's disease: some neglected implications of the experience of personal loss and grief.Death Stud. 1997; 21: 501-514
- Loneliness and depression in spousal caregivers of those with Alzheimer's disease vs noncaregiving spouses.Arch Psychiatr Nurs. 2003; 17: 135-143
- The shift in existential life situations of adult children to parents with dementia relocated to nursing homes.Open Nurs J. 2016; 10: 122-130
PROMIS® Instrument Development and Psychometric Evaluation: Scientific Standards. www.healthmeasures.net/images/PROMIS/PROMISStandards_Vers2.0_Final.pdf.
- The TBI-CareQOL measurement system: development and preliminary validation of health-related quality of life measures for caregivers of civilians and service members/veterans with traumatic brain injury.Arch Phys Med Rehabil. 2019; 100: S1-S12
- The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested in its first wave of adult self-reported health outcome item banks: 2005-2008.J Clin Epidemiol. 2010; 63: 1179-1194
- The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years.Med Care. 2007; 45: S3-S11
- Representativeness of the Traumatic Brain Injury Model Systems National Database.J Head Trauma Rehabil. 2012; 27: 391-403
- Overview of classical test theory and item response theory for the quantitative assessment of items in developing patient-reported outcomes measures.Clin Ther. 2014; 36: 648-662
- Test theory: a unified treatment.Lawrence Erlbaum Associates, Mahwah, NJ1999
- Having a fit: impact of number of items and distribution of data on traditional criteria for assessing IRT's unidimensionality assumption.Qual Life Res. 2009; 18: 447-460
- The role of the bifactor model in resolving dimensionality issues in health outcomes measures.Qual Life Res. 2007; 16: 19-31
- Mplus user's guide.Muthén & Muthén, Los Angeles2011
- The graded response model.in: van der Liden W.J. Handbook of modern item response theory. Springer, New York1996: 85-100
- Iordif: an R package for detecting differential item functioning using iterative hybrid ordinal logistic regression/item response theory and monte carlo simulations.J Stat Softw. 2011; 39: 1-30
- Differential item functioning analysis with ordinal logistic regression techniques.DIFdetect and difwithpar. Med Care. 2006; 44: S115-S123
- Principles and practice of structural equation modeling, 2nd ed..Guilford Press, New York2005
- Comparative fit indexes in structural models.Psychol Bull. 1990; 107: 238-246
- Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives.Struct Equ Modeling. 1999; 6: 1-55
- A step-by-step approach to using SAS for factor analysis and structural equation modeling.SAS Institute, Cary, NC1994
- Firestar: computerized adaptive testing simulation program for polytomous item response theory models.Applied Psychological Measurement. 2009; 33: 644-645
- Medical and psychosocial predictors of caregiver distress and perceived burden following traumatic brain injury.J Head Trauma Rehabil. 2009; 24: 145-154
- Caregiver burden during the year following severe traumatic brain injury.J Clin Exp Neuropsychol. 2002; 24: 434-447
- Caregiver burden in Danish family members of patients with severe brain injury: the chronic phase.Brain Inj. 2016; 30: 334-342
- A telehealth approach to caregiver self-management following traumatic brain injury: a randomized controlled trial.J Head Trauma Rehabil. 2016; 31: 180-190
- Social support moderates caregiver life satisfaction following traumatic brain injury.J Clin Exp Neuropsychol. 2003; 25: 1090-1101
- Predictors of caregiver and family functioning following traumatic brain injury: social support moderates caregiver distress.J Head Trauma Rehabil. 2002; 17: 155-174
- The invisible side of war: families caring for US service members with traumatic brain injuries and polytrauma.J Head Trauma Rehabil. 2012; 27: 3-13
- A randomized controlled trial to evaluate the veterans' in-home program for military veterans with traumatic brain injury and their families: report on impact for family members.PM R. 2016; 8: 495-509
Article info
Publication history
Published online: June 26, 2018
Footnotes
Disclosures: Noelle E. Carlozzi, Michael A. Kallen, Phillip A. Ianni, Angelle M. Sander, Elizabeth A. Hahn, Jennifer A. Miner, and Robin Hanks report grants from National Institutes of Health during the study period. The other authors have nothing to disclose.
Supported by the National Institutes of Health, National Institute of Nursing Research (grant no. R01NR013658), the National Center for Advancing Translational Sciences (grant no. UL1TR000433), and the Defense and Veterans Brain Injury Center.
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© 2018 by the American Congress of Rehabilitation Medicine
