Sage Journals: Discover world-class research

Abstract

BACKGROUND:

Caregiver burden is experienced by a significant number of caregivers of survivors of acquired brain injury (ABI). It is known that self-awareness can impact functioning following ABI. However, the impact of self-awareness on caregiver burden has not been established.

OBJECTIVE:

To investigate the relationship between self-awareness and caregiver burden following ABI.

METHODS:

We studied 57 patient-caregiver pairs up to 28 years post-discharge from a post-acute comprehensive holistic milieu-oriented neurorehabilitation program. The Mayo-Portland Adaptability Inventory-4 (MPAI-4) was completed by survivors of ABI and their caregivers. Discrepancies in reports between survivors of ABI and their caregivers were used to determine self-awareness. Additionally, caregivers completed the Zarit Burden Interview (ZBI).

RESULTS:

Survivors of ABI with impaired self-awareness reported significantly higher levels of functioning than survivors of ABI with unimpaired self-awareness (p < 0.001). Unimpaired self-awareness (p < 0.001) and lower survivor self-reported MPAI-4 Total Score (p < 0.001) significantly predicted caregiver burden.

CONCLUSIONS:

Survivors of ABI’s level of functioning and their level of self-awareness significantly impacted caregiver burden. Survivors of ABI with impaired self-awareness not only lack insight into their functional abilities but also tend to overestimate their capabilities; this likely contributes to the need for greater levels of supervision and worsened caregiver burden.

Keywords

Anosognosia awareness brain injuries neurological rehabilitation caregivers

Get full access to this article

View all access options for this article.

References

Al-Rawashdeh,

S. Y.

, Lennie,

T. A.

, Chung,

M. L.

(2016). Psychometrics of the Zarit burden interview in caregivers of patients with heart failure. Journal of Cardiovascular Nursing, 31(6), E21–E28. doi: 10.1097/JCN.0000000000000348.

Blumenfeld,

(2010). Neuroanatomy through clinical cases: Second Edition. Sunderland, MA: Sinauer Associates.

Cicerone

K. D.

, Goldin

, Ganci

, Rosenbaum

, Wethe

J. V.

, Langenbahn,

D. M.

, Malec

J. F.

, et al. (2019). Evidence-based cognitive rehabilitation: systematic review of the literature from 2009 through 2014. Archives of Physical Medicine and Rehabilitation, 100(8), 1515–1533. doi: 10.1016/j.apmr.2019.02.011.

Cicerone,

K. D.

, Langenbahn,

D. M.

, Braden,

, Malec,

J. F.

, Kalmar,

, Frass,

, et al. (2011). Evidence-based cognitive rehabilitation: Updated review of the literature from 2003 through 2008. Archives of Physical Medicine and Rehabilitation, 92(4), 519–530. doi: 10.1016/j.apmr.2010.11.015.

Geytenbeek,

, Fleming,

, Doig,

, & Ownsworth,

(2017). The occurrence of early impaired self-awareness after traumatic brain injury and its relationship with emotional distress and psychosocial functioning. Brain Injury, 31(13-14), 1791–1798. doi: 10.1080/02699052.2017.1346297.

Humpherys,

, Wood,

R. L.

, Phillips,

C. J.

, Macey,

(2013). The costs of traumatic injury: a literature review. ClinicoEconomics and Outcomes Research, 2013(5), 281–287. doi: 10.2147/CEOR.S44625.

Kelley,

, Sullivan,

, Loughlin

J. K.

, Hutson,

, Dahdah,

M. N.

, Long,

M. K.

, Schwab,

K. A.

, Poole,

J. H.

(2014). Self-awareness and neurobehavioral outcomes, 5 years or more after moderate to severe brain injury. Journal of Head Trauma Rehabilitation, 29(2), 147–52. doi: 10.1097/HTR.0b013e31826db6b9.

Kennedy,

M. R.

, Coelho,

, Turkstra,

, Ylvisaker,

, Sohlberg,

M. M.

, Yorkston,

, Chiou,

H. H.

, Kan,

P. F.

(2008). Intervention for executive functions after traumatic brain injury: A systemative review, Meta-analysis and clinical recommendations. Neuropsychological Rehabilitation. 1–43. doi: 10.1080/09602010701748644.

Klonoff,

P.S.

(2014), Psychotherapy for families after brain injury. New York, NY: Springer.

10.

Klonoff,

P. S.

(2010), Psychotherapy after Brain Injury: Principles and Techniques. New York, NY: The Guilford Press.

11.

Malec,

J.F.

(2005). The Mayo Portland Adaptability Inventory. The Center for Outcome Measurement in Brain Injury. http://www.tbims.org/combi/mpai (accessed May 23, 2019).

12.

Manskow,

U. S.

, Oddgeir,

, Roe,

, Braine,

, Damsgard,

, Anke,

(2017). Patterns of change and stability in caregiver burden and life satisfaction from 1 to 2 years after severe traumatic brain injury: A Norwegian longitudinal study. NeuroRehabilitation 211–222. doi: 10.3233/NRE-161406.

13.

Manskow,

U. S.

, Sigurdardottir,

, Roe,

, Andelic,

, Skandsen,

, Damsgard,

, Elmstahl,

, Anke,

(2015). Factors affecting caregiver burden 1 year after severe traumatic brain injury: A prospective nationwide multicenter study. Journal of Head Trauma Rehabilitation, 30(6), 411–23. doi: 10.1097/HTR.0000000000000085.

14.

Marsh,

N. V.

, Kersel,

D. A.

, Havill,

J. H.

, Sleigh,

J. W.

(1998). Caregiver burden at 1 year following severe traumatic brain injury. Brain Injury, 12(12), 1045–1059. doi: 10.1080/026990598121954 (A).

15.

Marsh,

N. V.

, Kersel,

D. A.

, Havill,

J. H.

, Sleigh,

J. W.

(1998a). Caregiver burden at 6 months following severe traumatic brain injury. Brain Injury, 12(3), 225–238. doi: 10.1080/026990598122700.

16.

Ownsworth,

, Desbois,

, Grant,

, Fleming,

, Strong,

(2006). The association among self-awareness, emotional well-being, and employment outcome following acquired brain injury: a 12-month longitudinal study. Rehabilitation Psychology, 5(1), 50–59. doi: 10.1037/0090-5550.51.1.50.

17.

Prigatano,

G. P.

(2012). Anosognosia, denial, and other disorders of phenomenological experience. Acta Neuropsychologica, 10(3), 371–384. doi: 10.5604/17307503.1023676.

18.

Prigatano,

G. P.

, Schacter,

D. L.

(Eds.). (1991), Awareness of deficit after brain injury: Clinical and theoretical issues. New York: Oxford University Press.

19.

Qadeer,

, Khalid,

, Amin,

, Murtaza,

, Khaliq,

M. F.

, Shoaib,

(2017). Caregiver’s burden of the patients with traumatic brain injury. Cureus, 9(8), e1590. doi: 10.7759/cureus.1590.

20.

Seng,

B. K.

, Luo,

, Ng,

W.Y.

, Lim,

, Chionh,

H. L.

, Goh,

, Yap,

(2010). Validity and reliability of the Zarit Burden Interview in assessing caregiving burden. Annals of the Academy of Medicine, Singapore, 39(10), 758–763.

21.

Sherer,

, Bergloff,

, Levin,

, High,

Jr. , Oden,

, Nick,

(1998). Impaired awareness and employment outcome after traumatic brain injury. Journal of Head Trauma Rehabilitation, 13(5), 52–61.

22.

Sherer,

, Oden,

, Bergloff,

, Levin,

, High,

W.M.

Jr. (1998). Assessment and treatment of impaired awareness after brain injury: implications for community re-integration. NeuroRehabilitation, 10, 25–37. doi: 10.3233/NRE-1998-10104.

23.

Siegert,

R. J.

, Jackson,

D. M.

, Tennant,

, Turner-Stokes,

(2010). Factor analysis and rasch analysis of the Zarit burden interview for acquired brain injury carer research. Journal of Rehabilitation Medicine, 43, 302–309. doi: 10.2340/16501977-0511.

24.

Trudel,

T. M.

, Tryon,

W. W.

, Purdum,

C. M.

(1998). Awareness of disability and long-term outcome after traumatic brain injury. Rehabilitation Psychology, 43(4), 267–281. doi: 10.1037/0090-5550.43.4.267.

25.

Zarit,

S. H.

, Reever,

K. E.

, Back-Peterson,

(1980). Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist, 20, 649–655. doi: 10.1093/geront/20.6.649.

Does self-awareness influence caregiver burden?

Abstract

BACKGROUND:

OBJECTIVE:

METHODS:

RESULTS:

CONCLUSIONS:

Keywords

Get full access to this article

References