Family Caregivers' inside Perspectives: Caring for an Adult with a Left Ventricular Assist Device as a Destination Therapy

Abstract

Context

Understanding the experience of caring for an adult with a left-ventricular assist device as a destination therapy (LVAD-DT) remains in its infancy.

Objective/Design

A hermeneutic-phenomenological inquiry guided by van Manen's methods was used to explore the LVAD-DT family caregiving experience.

Participants/Setting

Seven family caregivers (1 man and 6 women) 50 to 74 years old who cared for an adult with an LVAD-DT in home settings. Recruitment and data collection occurred in an outpatient mechanical circulatory support center in the Midwest.

Methods

Data were collected by means of face-to-face interviews using open-ended questions and 1 follow-up interview. Interviews were audio recorded and transcribed verbatim. Thematic analysis consisted of writing, rewriting, and reflecting across participants' data, which produced themes illustrating the experience and meaning of caring for an adult with an LVAD-DT. Themes were consensually validated. Procedures for trustworthiness are described.

Results

Five main themes were identified from participants' experiences: (1) advanced heart failure is a life-changing event, (2) self-doubt about LVAD caregiving improves over time, (3) lifestyle adjustments come with time, (4) persistent worry and stress, and (5) caregiving is not a burden—it's a part of life. These main themes were elucidated by 8 subthemes in which participants described a process of adjustment despite persistent worry and stress and eventually accepted caregiving as part of their lives. Future studies are needed to explore caregiver burden, adaptation, and the effects of caregiving outcomes, such as emotional and physical health and overall quality of life.

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References

Mozaffarian

Roger

. Heart disease and stroke statistics—2013 update: A report from the American Heart Association Circulation. 2013;127(1):e6–e245.

Peura

Colvin-Adams

Francis

. Recommendations for the use of mechanical circulatory support: Device strategies and patient selection: A scientific statement from the American Heart Association Circulation. 2012;126(22):2648–2667.

Milano

Lodge

Blue

. Implantable left-ventricular assist devices: New hope for patients with end-stage heart failure N Engl J Med. 2006;67(2):110–115.

Park

Tector

Piccioni

. Left ventricular assist devices as destination therapy: A new look at survival J Thorac Cardiovasc Surg. 2005;129(1):9–17.

Rose

Gelijns

Moskowitz

. Long-term use of a left ventricular assist device for end-stage heart failure N Engl J Med. 2001;345(20):1435–1443.

Park

Milano

Tatooles

. Outcomes in advanced heart failure patients with left ventricular assist devices for destination therapy Circ Heart Fail. 2012;5(2):241–248.

Long

Healy

Rasmusson

. Improving outcomes with long-term “destination” therapy using left ventricular assist devices J Thorac Cardiovasc Surg. 2008;135(6): 1353–1361.

Lietz

Long

Kfoury

. Outcomes of left ventricular assist device implantation as destination therapy in the post-REMATCH era: Implications for patient selection Circulation. 2007;116(5):497–505.

Slaughter

Rogers

Milano

. Advanced heart failure treated with continuous-flow left ventricular assist device N Engl J Med. 2009;361(23):2241–2251.

10.

Rogers

Aaronson

Boyle

. Continuous flow left ventricular assist device improves functional capacity and quality of life of advanced heart failure patients J Am Coll Cardiol. 2010;55(17):1826–1834.

11.

Kirklin

Naftel

Kormos

. Fifth INTERMACS annual report: Risk factor analysis from more than 6,000 mechanical circulatory support patients J Heart Lung Transplant. 2013;32(2):141–156.

12.

Casida

. The lived experience of spouses of patients with a left ventricular assist device before heart transplantation Am J Crit Care. 2005;14(2):145–151.

13.

Dew

Myaskovsky

DiMartini

Switzer

Schulberg

Kormos

. Onset, timing and risk for depression and anxiety in family caregivers to heart transplant recipients Psychol Med. 2004;34(6):1065–1082.

14.

Baker

Flattery

Salyer

Haugh

Maltby

. Caregiving for patients requiring left ventricular assistance device support Heart Lung. 2009;39(3):196–200.

15.

Kaan

Young

Cockell

Mackay

. Emotional experiences of caregivers of patients with a left ventricular assist device Prog Transplant. 2010;20(2):142–147.

16.

Marcuccilli

Casida

. From insiders' perspectives: Adjusting to caregiving for patients with left ventricular assist devices Prog Transplant. 2011;21(2):137–143.

17.

Casida

Marcuccilli

Peters

Wright

. Lifestyle adjustments of adults with long-term implantable left ventricular assist devices: Phenomenologic inquiry Heart Lung. 2011;40(6):511–520.

18.

Marcuccilli

Casida

Peters

. Modification of self-concept in patients with a left-ventricular assist device: An initial exploration J Clin Nurs. 2013;22(17–18):2456–2464.

19.

Dew

Kormos

Winowich

. Human factors issues in ventricular assist device recipients and their family caregivers ASAIO. 2000;46(3):367–373.

20.

Ferguson

Hull

Marble

Barg

Kirkpatrick

. Caregiver burden in LVAD-DT: A pilot study J Heart Lung Transplant. 2011;30(4):S71.

21.

Kitko

Boehmer

Hupcey

. Patient and caregiver perceptions of living with a left-ventricular assist device as destination therapy Circulation. 2011;124:A18224. Presented at the 2012 American Heart Association Scientific Sessions, Los Angeles, CA. http://circ.ahajournals.org/cgi/content/meeting_abstract/124/21_MeetingAbstracts/A18224. Accessed September 22, 2014.

22.

Petty

. Left ventricular assist device therapy: Family caregivers' stress, perceived burden and quality of life. http://purl.umn.edu/123393. Accessed February 26, 2014.

23.

Family Caregiver Alliance, National Center on Caregiving. 2006. A population at risk. http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1822. Accessed February 26, 2014.

24.

National Alliance for Caregiving and AARP. Caregiving in the U.S. Washington, DC: National Alliance for Caregiving and AARP; 2004.

25.

Healthy People. Healthy People 2010. http://www.healthypeople.gov/Publications/. Accessed February 26, 2014.

26.

National Institute of Nursing Research. The NINR Strategic Plan 2006–2010. http://www.ninr.nih.gov/AboutNINR/NINRMissionandStrategicPlan/. Accessed February 26, 2014.

27.

van Manen

. Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. Albany, NY: SUNY Press; 1990.

28.

Borson

Scanlan

Brush

Vitaliano

Dokmak

. The mini-cog: A cognitive ‘vital signs’ measure for dementia screening in multi-lingual elderly Int J Geriatr Psychiatry. 2000;15(11):1021–1027.

29.

Borson

Scanlan

Chen

Ganguli

. The Mini-Cog as a screen for dementia: Validation in a population-based sample J Am Geriatr Soc. 2003;51(10):1451–1454.

30.

QSR. NVivo 9. Using the Software. Cambridge, MA: QSR International; 2010.

31.

Lincoln

Guba

. Naturalistic Inquiry. Newbury Park, CA: Sage Publications; 1985.

32.

Akbarin

Aarts

. Being a close relative of a patient with a left ventricular assist device Eur J Cardiovasc Nurs. 2013;12(1):64–68.

33.

Egerod

Overgaard

. Taking a back seat: Support and self-preservation in close relatives of patients with left ventricular assist device Eur J Cardiovasc Nurs. 2012;11(4):380–387.

34.

Chapman

Parameshwar

Jenkins

Large

Tsui

. Psychosocial issues for patients with ventricular assist devices: A qualitative pilot study Am J Crit Care. 2007;16(1):72–81.

35.

Lazarus

Folkman

. Stress, Appraisal, and Coping. New York, NY: Springer; 1984.

36.

Martensson

Dracup

Fridlund

. Decisive situations influencing spouses' support of patients with heart failure: A critical incident technique analysis Heart Lung. 2001;30(5):341–350.

37.

Murray

Boyd

Kendall

Worth

Benton

Clausen

. Dying of lung cancer or cardiac failure: Prospective qualitative interview study of patients and their caregivers in the community BMJ. 2002;325(7370):929.

38.

Scott

. Caregiving and care receiving among a technologically dependent heart failure population ANS Adv Nurs Sci. 2000;23(2):82–97.

39.

Braun

Mikulincer

Rydall

Walsh

Rodin

. Hidden morbidity in cancer: Spouse caregivers J Clin Oncol. 2007;25(30):4829–4834.

40.

Clark

Rummans

Sloan

. Quality of life of caregivers of patients with advanced stage cancer Am J Hosp Palliat Care. 2006;23(3):185–191.

41.

Harding

Higginson

. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness? Palliat Med. 2003;17(1):63–74.

42.

Herbert

Arnold

Schulz

. Improving well-being in caregivers of terminally ill patients: Making the case for patient suffering as a focus of intervention research J Pain Symptom Manage. 2007;34(5):539–546.

43.

Douglas

Daly

. Caregivers of long-term ventilator patients: Physical and psychological outcomes Chest. 2003;123(4):1073–1081.

44.

Belle

Schulz

Mendelsohn

Chelluri

. Prevalence and outcomes of caregiving after prolonged (> or = 48 hours) mechanical ventilation in the ICU Chest. 2004;125(2):597–606.

45.

Belasco

Barbosa

Bettencourt

Diccini

Sesso

. Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis Am J Kidney Dis. 2006;48(6):955–963.

46.

Belasco

Sesso

. Burden and quality of life of caregivers for hemodialysis patients Am J Kidney Dis. 2002;39(4):805–812.

47.

Dougherty

Thompson

. Intimate partner physical and mental health after sudden cardiac arrest and receipt of an implantable cardioverter defibrillator Res Nurs Health. 2009;32(4):432–442.

48.

Jenkins

Powell

Schron

. Partner quality of life in the antiarrhythmics versus implantable defibrillators trial J Cardiovasc Nurs. 2007;22(6):472–479.

49.

Sowell

Sears

Jr Walker

Kuhl

Conti

. Anxiety and marital adjustment in patients with implantable cardioverter defibrillators and their spouses J Cardiopulm Rehabil Prev. 2007;27(1):46–49.

50.

Agren

Evangelista

Stromberg

. Do partners of patients with chronic heart failure experience caregiver burden? Eur J Cardiovasc Nurs. 2010;9(4):254–262.

51.

Bakas

Pressler

Johnson

Nauser

Shaneyfelt

. Family caregiving in heart failure Nurs Res. 2006;55(3):180–188.

52.

Hwang

Luttik

Dracup

Jaarsma

. Family caregiving for patients with heart failure: Types of care provided and gender differences J Card Fail. 2010;16(5):398–403.

53.

Luttik

Jaarsma

Veeger

Tijssen

Sanderman

van Veldhuisen

. Caregiver burden in partners of heart failure patients: Limited influence of disease severity Eur J Heart Fail. 2007;9(6–7):695–701.

54.

Luttik

Jaarsma

Veeger

van Veldhuisen

. For better and for worse: Quality of life impaired in heart failure patients as well as their partners Eur J Cardiovasc Nurs. 2008;4(1):11–14.

55.

Pressler

Gradus-Pizlo

Chubinski

. Family caregivers of patients with heart failure: A longitudinal study J Cardiovasc Nurs. 2013;28(5):417–428.

56.

Lindenfeld

Albert

Boehmer

. Executive Summary: HFSA 2010 Comprehensive Heart Failure Practice Guidelines J Cardiac Fail. 2010;16:475–539.