Caring again: Support for parent caregivers of wounded,ill,and/or injured adult children veterans

Abstract

BACKGROUND:

Parents often provide care to adult children veterans with polytrauma, traumatic brain injury, and/or post-traumatic stress disorder.

OBJECTIVE:

This two-arm randomized clinical trial compared interventions to help parent caregivers improve their depression, anxiety, and burden and manage care by decreasing troubling and concerning behaviors.

METHODS:

Interventions were six one-hour structured one-on-one behavioral sessions (REACH) or six 30-minute prerecorded online educational webinars. Both focused on knowledge, strategies for care, and coping, but REACH sessions were targeted, interactive, and skills-based. Quantitative and qualitative data were collected by telephone. Quantitative analyses included chi-squared test or independent samples t-test and repeated measures mixed linear modeling, with theme development for qualitative data.

RESULTS:

There were 163 parent caregivers, mostly mothers. During six months, participants in both arms improved significantly in depression, anxiety, burden, and reported veteran troubling and concerning behaviors. REACH caregivers showed a group by time improvement in concerning behaviors. Benefits included resources, self-reflection, not feeling alone, new skills, improved self-efficacy, and helping others. Specific concerns include exclusion from military and veteran care briefings and concern for the future.

CONCLUSION:

The positive response to both interventions provides opportunities for organizations with varying resources to provide support for parent caregivers. Interventions need to be targeted to parents’ particular concerns and needs.

Keywords

Military veterans parenthood/parent-adult child relations caregivers families <education cost/financing <long-term care PTSD TBI

Get full access to this article

View all access options for this article.

References

Abraham,

T. H.

, Ono,

S. S.

, Moriarty,

, Winter,

, Bender,

R. E.

, Facundo,

, & True,

(2021). Revealing the invisible emotion work of caregivers: A photovoice exploration of informal care provided by family caregivers for post-9/11 veterans with traumatic brain injuries. The Journal of Head Trauma Rehabilitation, 36(1), 25–33. https://doi.org/10.1097/HTR.0000000000000589

Adams,

R. S.

, Corrigan,

J. D.

, & Dams-O’Connor,

(2020). Opioiduse among individuals with traumatic brain injury: A perfect storm?Journal of Neurotrauma, 37, 211–216. https://doi.org/10.1089/neu.2019.6451

Adams,

R. S.

, Larson,

M. J.

, Meerwijk,

E. L.

, Williams,

T. V.

, & Harris,

A. H. S.

(2019). Postdeployment polytrauma diagnoses among soldiers and veterans using the Veterans Health Affairs polytrauma system of care and receipt of opioids, nonpharmacologic, and mental health treatments. Journal of Head Trauma Rehabilitation, 34, 167–175. https://doi.org/10.1097/HTR.0000000000000481

Avallone,

K. M.

, Smith,

E. R.

, Ma,

, Gargan,

, Porter,

K. E.

, Authier,

C. C.

, Martis,

, Liberzon,

, & Rauch,

S. A. M.

(2019). PTSD as a mediator in the relationship between post-concussive symptoms and pain among OEF/OIF/OND veterans. Military Medicine, 184, e118–e123. https://doi.org/10.1093/milmed/usy225

Barnes,

D.E.

, Byers,

A.L.

, Gardner,

R.C.

, Seal,

K.H.

, Boscardin,

, & Yaffe,

(2018). Association of mild traumatic brain injury with and without loss of consciousness with dementia in US military veterans. JAMA Neurology, 75(9), 1055–1061. https://doi.org/10.1001/jamaneurol.2018.0815

Barnes,

D. E.

, Kaup,

, Kirby,

, Byers,

A. L.

, Diaz-Arrastia,

, & Yaffe,

(2014). Traumatic brain injury and risk of dementia in older veterans. Neurology, 83(4), 312–319. https://doi.org/10.1212/WNL.0000000000000616

Bédard,

, Molloy,

, Squire,

, Dubois,

, Lever,

J. A.

, & O’Donnell,

(2001). The Zarit Burden Interview: A new short version and screening version. Gerontologist, 41, 652–657. https://doi.org/10.1093/geront/41.5.652

Belle,

, Burgio,

, Burns,

, Coon,

, Czaja,

, Gallagher-Thompson,

, Gitlin,

L. N.

, Klinger,

, Koepke,

K. M.

, Lee,

C. C.

, Martindale-Adams,

, Nichols,

, Schulz,

, Stahl,

, Stevens,

, Winter,

, & Zhang

. for the REACH II Investigators. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: A randomized controlled trial. Annals of Internal Medicine, 145(10), 727–738. https://doi.org/10.7326/0003-4819-145-10-200611210-00005

Bernard,

(2006). Research methods in anthropology. Qualitative and quantitative approaches. Lanham, MD: AltaMira Press.

10.

Bovin,

M. J.

, Meyer,

E. C.

, Kimbrel,

N. A.

, Kleiman,

S. E.

, Green,

J. D.

, Morissette,

S. B.

, & Marx,

B. P.

(2019). Using the World Health Organization Disability Assessment Schedule 2.0 to assess disability in veterans with posttraumatic stress disorder. PLoS One, 14(8), e0220806. https://doi.org/10.1371/journal.pone.0220806

11.

Brickell,

T. A.

, French,

L. M.

, Lippa,

S. M.

, Wright,

M. M.

, & Lange,

R. T.

(2020). Caring for a service member or veteran following traumatic brain injury influences caregiver mental health. Military Psychology, 32(4), 341–351. https://doi.org/10.1080/08995605.2020.1754149

12.

Brickell,

T. A.

, Lippa,

S. M.

, Wright,

M. M.

, Varbedian,

N. V.

, Tippett,

C. E.

, Byrd,

A. M.

, French,

L. M.

, & Lange,

R. T.

(2022). Is traumatic brain injury severity in service members and veterans related to health-related quality of life in their caregivers? The Journal of Head Trauma Rehabilitation, Advance online publication. https://doi.org//10.1097/HTR.0000000000000802

13.

Burgio,

L. D.

, Collins,

I. B.

, Schmid,

, Wharton,

, McCallum,

, & DeCoster,

(2009). Translating the REACH caregiver intervention for use by Area Agency on Aging personnel: The REACH OUT program. The Gerontologist, 49(1), 103–16. https://doi.org/10.1093/geront/gnp012

14.

Christensen,

, Hill,

, Netzer,

, Farr,

, Schaefer

, & McMahon,

(2009). Economic impact on caregivers of the seriously wounded, ill, and injured. Alexandria, VA: Center for Naval Analyses. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.447.4200&rep=rep1&type=pdf

15.

Cohen,

, Kessler,

R. C.

, & Gordon,

L. U.

(1995) Measuring stress. New York: Oxford University Press.

16.

Czaja,

S. J.

, Gitlin,

L. N.

, Schulz,

, Zhang,

, Burgio,

L. D.

, Stevens,

A. B.

, Nichols,

L. O.

, & Gallagher-Thompson,

(2009). Development of the risk appraisal measure: A brief screen to identify risk areas and guide interventions for dementia caregivers. Journal of the American Geriatrics Society, 57(6), 1064–72. https://doi.org/10.1111/j.1532-5415.2009.02260.x

17.

Delgado,

R. E.

, Peacock,

, Elizondo,

, Wells,

, Grafman,

J. H.

, & Pugh,

M. J.

(2018). A family’s affair: Caring for veterans with penetrating traumatic brain injury. Military Medicine, 183(Suppl 1), 379–385. https://doi.org/10.1093/milmed/usx156

18.

DeSalvo,

K. B.

, Fisher,

W. P.

, Tran,

, Bloser,

, Merrill,

, & Peabody,

(2006). Assessing measurement properties of two single-item general health measures. Quality of Life Research, 15, 191–201. https://doi.org/10.1007/s11136-005-0887-2

19.

Doser,

, & Norup,

(2016). Caregiver burden in Danish family members of patients with severe brain injury: The chronic phase. Brain Injury, 30(3), 334–42. https://doi.org/10.3109/02699052.2015.1114143

20.

Dreer,

L. E.

, Cox,

M. K.

, McBrayer,

, Neumeier,

W. H.

, Herman,

, & Malone,

L. A.

(2019). Resilience among caregivers of injured service members: Finding the strengths in caregiving. Archives of Physical Medicine and Rehabilitation, 100(4S), S76–S84. https://doi.org/10.1016/j.apmr.2018.12.027

21.

Ennis,

, Rosenbloom,

B. N.

, Canzian,

, & Topolovec-Vranic,

(2013). Depression and anxiety in parent versus spouse caregivers of adult patients with traumatic brain injury: A systematic review. Neuropsychological Rehabilitation, 23, 1–18. https://doi.org/10.1080/09602011.2012.712871

22.

Folkman,

, Schaeffer,

, & Lazarus,

(1979). Cognitive processes as mediators of stress and coping. In V. Hamilton and D.Warburton (Eds.), Human stress and cognition, Chichester: John Wiley and Sons, pp. 265–298.

23.

Glaser,

B. G.

, & Strauss,

A. L.

(1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Publishing Company.

24.

Goldberg,

, Magruder,

K. M.

, Forsberg,

C. W.

, Kazis,

L. E.

, Ustün,

T. B.

, Friedman,

M. J.

, Litz,

B. T.

, Vaccarino,

, Heagerty,

P. J.

, Gleason,

T. C.

, Huang,

G. D.

, & Smith,

N. L.

(2014). The association of PTSD with physical and mental health functioning and disability (VA Cooperative Study #569: The course and consequences of posttraumatic stress disorder in Vietnam-era veteran twins). Quality of Life Research, 23(5), 1579–1591. https://doi.org/10.1007/s11136-013-0585-4

25.

Griffin,

J. M.

, Friedemann-Sánchez,

, Jensen,

A. C.

, Taylor,

B. C.

, Gravely,

, Clothier,

, Simon,

A. B.

, Bangerter,

, Pickett,

, Thors,

, Ceperich,

, Poole,

, & van Ryn,

(2012). The invisible side of war: Families caring for US service members with traumatic brain injuries and polytrauma. The Journal of Head Trauma Rehabilitation, 27(1), 3–13. https://doi.org/10.1097/HTR.0b013e3182274260

26.

Katz,

, Ford,

A. B.

, Moskowitz,

R. W.

, Jackson,

B. A.

, & Jaffee,

M. W.

(1963). The index of ADL: A standardized measure of biological and psychosocial function. Journal of the American Medical Association, 185, 914–919. https://doi.org/10.1001/jama.1963.03060120024016

27.

Kehle-Forbes,

S. M.

, Campbell,

E. H.

, Taylor,

B. C.

, Scholten,

, & Sayer,

(2017). Does co-occurring traumatic brain injury affect VHA outpatient health service utilization and associated costs among veterans with posttraumatic stress disorder? An examination based on VHA Administrative Data. The Journal of Head Trauma Rehabilitation, 32, E16–E23. https://doi.org/10.1097/HTR.0000000000000227

28.

Kocalevent,

R. D.

, Hinz,

, & Brähler,

(2013). Standardization of a screening instrument (PHQ-15) for somatization syndromes in the general population. BMC Psychiatry, 13, 91. https://doi.org/10.1186/1471-244X-13-91

29.

Kratz,

A. L.

, Sander,

A. M.

, Brickell,

T. A.

, Lange,

R. T.

, & Carlozzi,

N. E.

(2017). Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life. Neuropsychological Rehabilitation, 27(1), 16–37. https://doi.org/10.1080/09602011.2015.1051056

30.

Kroenke,

, Spitzer,

R. L.

, & Williams,

J. B.

(2002). The PHQ-: Validity of a new measure for evaluating the severity of somatic symptoms. Psychosomatic Medicine, 64(2), 258–266. https://doi.org/10.1097/00006842-200203000-00008

31.

Kroenke,

, Spitzer,

R. L.

, & Williams,

J. B. W.

(2001). The PHQ-: Validity of a brief depression severity measure. Journal of General Internal Medicine, 16, 606–13. https://doi.org/10.1046/j.1525-1497.2001.016009606.x

32.

Lawton,

M. P.

, & Brody,

E. M.

(1969). Assessment of older people: Self-maintaining and instrumental activities of daily living. The Gerontologist, 9(3), 179–86. https://doi.org/10.1093/geront/9.3_Part_1.179

33.

Lazarus,

E. B.

, & Launier,

(1978). Stress-related transactions between persons and environment. In L. Pervin & M. Lewis (Eds). Perspectives in international psychology, New York: Plenum Press, pp. 287–325.

34.

MacGregor,

A. J.

, Zouris,

J. M.

, Watrous,

J. R.

, McCabe,

C. T.

, Dougherty,

A. L.

, Galarneau,

M. R.

, & Fraser,

J. J.

(2020). Multimorbidity and quality of life after blast-related injury among US military personnel: A cluster analysis of retrospective data. BMC Public Health, 28(20), 578. https://doi.org/10.1186/s12889-020-08696-4

35.

Mahoney,

, Jones,

, Coon,

, Mendelsohn,

, Gitlin,

, & Ory,

(2003). The caregiver vigilance scale: Application and validation in the resources for enhancing Alzheimer’s caregiver health (REACH) project. American Journal of Alzheimer&s Disease and Other Dementias, 18(1), 39–48. https://doi.org/10.1177/153331750301800110

36.

Mailey,

E. L.

, Irwin,

B. C.

, Joyce,

J. M.

, & Hsu,

W. W.

(2019). Independent but not alone: A web-based intervention to promote physical and mental health among military spouses. Applied Psychological Health and Well Being, 11, 562–583. https://doi.org/10.1111/aphw.12168

37.

Malec,

J. F.

, Van Houtven,

C. H.

, Tanielian,

, Atizado,

, & Dorn,

M. C.

(2017). Impact of TBI on caregivers of veterans with TBI: Burden and interventions. Brain Injury, 17(31), 1235–1245. https://doi.org/10.1080/02699052.2016.1274778

38.

Marshall,

C. A.

, Nalder,

, Colquhoun,

, Lenton,

, Hansen,

, Dawson,

D. R.

, Zabjek,

, & Bottari,

(2019). Interventions to address burden among family caregivers of persons aging with TBI: A scoping review. Brain Injury, 33, 255–265. https://doi.org/10.1080/02699052.2018.1553308

39.

Martindale-Adams,

J. L.

, Zuber,

, Graney,

M. J.

, Burns,

, & Nichols,

(2021). Effect of a behavioral intervention on outcomes for caregivers of veterans with PTSD. Military Behavioral Health, 9(4), 357–367. https://doi.org/10.1080/21635781.2021.1927916

40.

Martindale-Adams,

J. L.

, Zuber,

, Levin,

, Burns,

, Graney,

, & Nichols,

(2020). Integrating caregiver support into multiple sclerosis care. Multiple Sclerosis International, 2020, Article ID 3436726. https://doi.org/10.1155/2020/3436726.

41.

Marx,

B. P.

, Wolf,

E. J.

, Cornette,

M. M.

, Schnurr,

P. P.

, Rosen,

M. I.

, Friedman,

M. J.

, Friedman,

M. J.

, & Speroff,

(2015). Using the WHODAS 2.0 to assess functioning among veterans seeking compensation for posttraumatic stress disorder. Psychiatric Services, 66(12), 1312–1317. https://doi.org/10.1176/appi.ps.201400400

42.

Maxwell,

(1996). Qualitative research design: An interactive approach. Thousand Oaks, CA: Sage.

43.

Miller,

K. E.

, Lindquist,

J. H.

, Olsen,

M. K.

, Smith,

, Voils,

C. I.

, Oddone,

E. Z.

, Sperber,

N. R.

, Shepherd-Banigan,

, Wieland,

G. D.

, Henius,

, Kabat,

, & Van Houtven,

C. H.

(2019). Invisible partners in care: Snapshot of well-being among caregivers receiving comprehensive support from Veterans Affairs. Health Science Reports, 2(3), e112. https://doi.org/10.1002/hsr2.112

44.

National Alliance for Caregiving (NAC) & American Association of Retired Persons (AARP). (2004). Caregiving in the U.S. MetLife Foundation. https://assets.aarorg/rgcenter/il/us_caregiving_.pdf

45.

National Alliance for Caregiving (NAC) & United Health Foundation (UHF). (2010). Caregivers of veterans –Serving on the homefront: Report of study findings. http://www.caregiving.org/data/_Caregivers_of_Veterans_FULLREPORT_WEB_FINAL.pdf

46.

Nichols,

L. O.

, Martindale-Adams,

, Burns,

, Graney,

M.J.

, & Zuber,

(2011). Translation of a dementia caregiver support program in a health care system: REACH VA. Archives of Internal Medicine, 171(4), 353–359.

47.

Nichols,

L. O.

, Martindale-Adams,

, Burns,

, Zuber,

, & Graney,

M. J.

(2016). REACH VA: Moving from translation to system implementation. The Gerontologist, 56, 135–144. https://doi.org/10.1093/geront/gnu112

48.

Nichols,

L. O.

, Martindale-Adams,

J. L.

, Burns,

, Graney,

M. J.

, Zuber,

J. K.

, & Kennedy,

S. I.

(2012). Potential explanations for control group benefit. Clinical Trials, 9(5), 588–595. https://doi.org/10.1177/1740774512455876

49.

O’Rourke,

, & Tuokko,

H. A.

(2003). Psychometric properties of an abridged version of the Zarit burden interview with a representative Canadian caregiver sample. The Gerontologist, 43, 121–127. https://doi.org/10.1093/geront/43.1.121

50.

Rainville,

, Skufca,

, & Mehegan,

(2016). Family caregiving and out-of-pocket costs: 2016 report. AARP Research, Washington, DC. https://www.aarorg/content/dam/aarp/research/surveys_statistics/ltc//family-caregiving-costs">https://www.aarorg/content/dam/aarp/research/surveys_statistics/ltc//family-caregiving-costs">https://www.aarorg/content/dam/aarp/research/surveys_statistics/ltc//family-caregiving-costs. https://doi.org/10.26419%252Fres.00138.001.pdf

51.

Ramchand,

, Tanielian,

, Fisher,

M. P.

, Vaughn,

C.A.

, Trail,

T. E.

, Epley,

, Voorhies,

, Robbins,

W. W.

, Robinson,

, & Ghosh-Dastidar,

(2014). Hidden heroes: American’s military caregivers. Santa Monica, CA: RAND Corporation. https://www.rand.org/pubs/research_reports/RR499.html

52.

Ryan,

G. W.

, & Bernard,

H. R.

(2003). Techniques to identify themes. Field Methods, 15, 85–109. https://doi.org/10.1177/[1525822X02239569]

53.

Seal,

K. H.

, Bertenthal,

, Barnes,

, Byers,

A. L.

, Strigo,

, & Yaffe,

. for the Chronic Effects of Neurotrauma Consortium Study Group. (2017). Association of traumatic brain injury with chronic pain in Iraq and Afghanistan veterans: Effect of comorbid mental health conditions. Archives of Physical Medicine and Rehabilitation, 98, 1636–45. https://doi.org/10.1016/j.apmr.2017.03.026

54.

Shepherd-Banigan,

M. E.

, Shapiro,

, McDuffie,

J. R.

, Brancu,

, Sperber,

N. R.

, Van Houtven,

C. H.

, Kosinski,

A. S.

, Mehta,

N. N.

, Nagi,

, & Williams,

J. W.

, Jr. (2018). Interventions that support or involve caregivers or families of patients with traumatic injury: A systematic review. Journal of General Internal Medicine, 18(33), 1177–1186. https://doi.org/10.1007/s11606-018-4417-7

55.

Sikkes,

S. A.

, de Lange-de Klerk,

E. S.

, Pijnenburg,

Y.A.

, Scheltens,

, & Uitdehaag,

B. M.

(2009). A systematic review of instrumental activities of daily living scales in dementia: Room for improvement. Journal of Neurology, Neurosurgery, & Psychiatry, 80(1), 7–12. https://doi.org/10.1136/[jnn2008.155838]

56.

Smith,

V.A.

, Lindquist,

, Miller,

K. E. M.

, Shepherd-Banigan,

, Olsen,

, Campbell-Kotler,

, Henius,

, Kabat,

, & Van Houtven,

C. H.

(2019). Comprehensive family caregiver support and caregiver well-being: Preliminary evidence from a pre-post-survey study with a non-equivalent control group. Frontiers in Public Health, 7, 122. https://doi.org/10.3389/fpubh.2019.0012

57.

Song,

, Wang,

C. P.

, McGeary,

D. D.

, Jaramillo,

C. A.

, Eapen,

B. C.

, Amuan,

, McGeary,

C. A.

, Potter,

J. S.

, & Pugh,

M. J.

(2020). Five-year pain intensity and treatment trajectories of post-9/11 veterans with mild traumatic brain injury. The Journal of Pain, 21, 1005–1017. https://doi.org/10.[1016/j.jpain.2019.12.009]

58.

Spector,

W. D.

, Katz,

, Murphy,

J. B.

, & Fulton,

J. P.

(1987). The hierarchical relationship between activities of daily living and instrumental activities of daily living. Journal of Chronic Disease, 40(6), 481–489. https://doi.org/10.1016/0021-9681(87)90004-x

59.

Spitzer,

R. L.

, Kroenke,

, Williams,

J. B. W.

, & Löwe,

(2006). A brief measure for assessing generalized anxiety disorder: The GAD-7. Archives of Internal Medicine, 166, 1092–1097. https://doi.org/10.1001/archinte.166.10.1092

60.

Stagg,

, & Larner,

A. J.

(2015). Zarit burden interview: Pragmatic study in a dedicated cognitive function clinic. Progress in Neurology and Psychiatry, 19, 23–27. https://doi.org/10.1002/pn390

61.

Tanielian,

, Ramchand,

, Fisher,

M. P.

, Sims,

C. S.

, Harris,

R. S.

, & Harrell,

M. C.

(2013). Military caregivers: Cornerstones of support for our nation’s wounded, ill, and injured veterans. Santa Monica, CA: RAND Corporation. https://www.rand.org/pubs/research_reports/RR244.html

62.

Thakur,

, Oni,

, Singh,

, Sharma,

, Burns,

D. M.

, Sharma,

, & Oehlert,

M. E.

(2020). Demographic profile and service-connection trends of posttraumatic stress disorder and traumatic brain injury in US veterans pre- and post-9/11. Federal Practitioner, 37(3), 128–137.

63.

Ustün,

T. B.

(ed.). 2010. Measuring health and disability: Manual for WHO disability assessment schedule WHODAS 2.0. World Health Organization. https://www.worldcat.org/title/measuring-health-and-disability-manual-for-who-disability-assessment-schedule-whodas-20/oclc/665838139

64.

Wakabayashi,

, & Donato,

K.M.

(2006). Does caregiving increase poverty among women in later life? Evidence from the health and retirement survey. Journal of Health and Social Behavior, 47(3), 258–274. https://doi.[org/10.1177/002214650604700305]

65.

Ware,

J. E.

, Kosinski,

, Bayliss,

M. S.

, McHorney,

C. A.

, Rogers,

W. H.

, & Raczek,

(1995). Comparison of methods for the scoring and statistical analysis of SF- health profile and summary measures: Summary of results from the Medical Outcomes Study. Medical Care, 33(4 Suppl), 264–279.

66.

Wojtowicz,

, Silverberg,

N. D.

, Bui,

, Zafonte,

, Simon,

, & Iverson,

G. L.

(2017). Psychiatric comorbidity and psychosocial problems among treatment-seeking veterans with a history of mild traumatic brain injury. Focus, 15, 384–389. https://doi.org/10.1176/appi.focus.20170028

67.

Wongvatunyu,

, & Porter,

E. J.

(2008). Changes in family life perceived by mothers of young adult TBIsurvivors. Journal of Family Nursing, 14(3), 314–332. https://doi.org/10.1177/[1074840708321473]

68.

Zarit,

S. H.

, Reever,

K. E.

, & Bach-Peterson,

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