As more patients with cardiac failure are being bridged to transplantation with left ventricular assist devices (LVAD), more insight into the lives of their close relatives is needed.
Aims:
To explore the experiences and coping strategies of LVAD patients’ close relatives during bridge to transplantation and to generate theory.
Methods:
The study had a qualitative design using grounded theory and NVivo version 9 to analyse one paired interview (n=2) and one group interview (n=5) with LVAD patients’ close relatives.
Results:
The main finding was the importance of supporting the close relatives who support the LVAD patient. The core category was support and self-preservation in close relatives. We constructed the support cascade model illustrating support from close relatives to the patient (main obligation) and to other family members (other obligations), and support from personal and professional relations to the close relatives.
Conclusions:
Support from close relatives potentially benefits patients, family, healthcare providers, and society in general. Our study highlighted the importance of supporting the close relatives supporting the patient and we have suggested some modifiable factors to enable social support and ease transitions in the illness trajectory. We suggest that awareness of social support systems might be beneficial in comprehensive care planning for LVAD patients and their close relatives.
BogaevRCPamboukianSVMooreSA. Comparison of outcomes in women versus men using a continuous-flow left ventricular assist device as a bridge to transplantation. J Heart Lung Transplant2011; 30(5): 515–522.
2.
WooYJAckerMA. Implantable ventricular assist device exchange with focused intravascular deairing techniques. Ann Thorac Surg2011; 91(1): 306–307.
3.
MaciverJRaoVRossHJ. Quality of life for patients supported on a left ventricular assist device. Expert Rev Med Devices2011; 8(3): 325–337.
4.
StarlingRCNakaYBoyleAJ. Results of the post-U.S. Food and Drug Administration-Approval Study with a continuous flow left ventricular assist device as a bridge to heart transplantation a prospective study using the INTERMACS (Interagency Registry for Mechanically Assisted Circulatory Support). J Am Coll Cardiol2011; 57(19): 1890–1898.
5.
SanderKAndersenCBBoesgaardS. Det mekaniske hjerte – HeartMate I – de danske resultater [The mechanical heart – HeartMate I – the Danish results]. Ugeskr Laeger2007; 169(39): 3290–3294.
6.
MaciverJRossHJDelgadoDH. Community support of patients with a left ventricular assist device: the Toronto General Hospital experience. Can J Cardiol2009; 25(11): e377–e381.
7.
BunzelBLaederach-HofmannKWieselthalerGM. Posttraumatic stress disorder after implantation of a mechanical assist device followed by heart transplantation: evaluation of patients and partners. Transplant Proc2005; 37(2): 1365–1368.
8.
CasidaJ. The lived experience of spouses of patients with a left ventricular assist device before heart transplantation. Am J Crit Care2005; 14(2): 145–151.
9.
KaanAYoungQRCockellS. Emotional experiences of caregivers of patients with a ventricular assist device. Prog Transplant2010; 20(2): 142–147.
StaytLC. Death, empathy and self preservation: the emotional labour of caring for families of the critically ill in adult intensive care. J Clin Nurs2009; 18(9): 1267–1275.
12.
PenrodJHupceyJEShipleyPZ. A model of caregiving through the end of life: seeking normal. West J Nurs Res2012; 34(2): 174–193.
13.
DracupKEvangelistaLSDoeringL. Emotional well-being in spouses of patients with advanced heart failure. Heart Lung2004; 33(6): 354–361.
14.
AgrenSEvangelistaLStrombergA. Do partners of patients with chronic heart failure experience caregiver burden?Eur J Cardiovasc Nurs2010; 9(4): 254–262.
15.
SirriLMagelliCGrandiS. Predictors of perceived social support in long-term survivors of cardiac transplant: the role of psychological distress, quality of life, demographic characteristics and clinical course. Psychol Health2011; 26(1): 77–94.
16.
OvergaardDKjeldgaardHGEgerodI. Life in transition: a qualitative study of the illness experience and vocational adjustment of patients with left ventricular assist device. J Cardiovasc Nurs. Epub ahead of print 9September2011. DOI: 10.1097/JCN.0b013e318227f119.
17.
BrownJB. The use of focus groups in clinical research. In: CrabtreeBFMillerWL (eds) Doing qualitative research. 2 ed.Thousand Oaks: Sage, 1999. pp.109–126.
18.
CreswellJW. Qualitative inquiry and research design: choosing among five approaches. 2 ed.Thousand Oaks: Sage, 2007.
19.
GlaserBG. Advances in the methodology of grounded theory. Theoretical sensitivity. San Francisco: University of California San Francisco, 1978.
20.
GlaserBGStraussAL. The discovery of grounded theory: strategies for qualitative research. New York: Aldine de Gruyter, 1967/1999.
21.
WalkerDMyrickF. Grounded theory: an exploration of process and procedure. Qual Health Res2006; 16(4): 547–559.
22.
WilliamsPBarclayLSchmiedV. Defining social support in context: a necessary step in improving research, intervention, and practice. Qual Health Res2004; 14(7): 942–960.
23.
RayRAStreetAF. Ecomapping: an innovative research tool for nurses. J Adv Nurs2005; 50(5): 545–552.
24.
RempelGRNeufeldAKushnerKE. Interactive use of genograms and ecomaps in family caregiving research. J Fam Nurs2007; 13(4): 403–419.
25.
JonesCBackmanCCapuzzoM. Intensive care diaries reduce new onset post traumatic stress disorder following critical illness: a randomised, controlled trial. Crit Care2010; 14: R168.
26.
EgerodIStorliSAkermanE. Prospective intensive care diaries in Scandinavia: a comparative study of emergence and evolution. Nurs Inq2011; 18(3): 235–246.
27.
EgerodIChristensenDSchwartz-NielsenKH. Constructing the illness narrative: a grounded theory exploring patients’ and relatives’ use of intensive care diaries. Crit Care Med 2011; 39(8): 1922–1928.
28.
MorseJMPoolerC. Patient-family-nurse interactions in the trauma-resuscitation room. Am J Crit Care2002; 11(3): 240–249.
29.
MorseJM. Responding to the cues of suffering. Health Care Women Int2000; 21(1): 1–9.
30.
ChapmanEParameshwarJJenkinsD. Psychosocial issues for patients with ventricular assist devices: a qualitative pilot study. Am J Crit Care2007; 16(1): 72–81.
31.
McAdamJLAraiSPuntilloKA. Unrecognized contributions of families in the intensive care unit. Intensive Care Med2008; 34(6): 1097–1101.
32.
HupceyJE. Looking out for the patient and ourselves–the process of family integration into the ICU. J Clin Nurs1999; 8(3): 253–262.
33.
AgardASHarderI. Relatives’ experiences in intensive care – finding a place in a world of uncertainty. Intensive Crit Care Nurs2007; 23(3): 170–177.
34.
EvangelistaLSDracupKDoeringL. Emotional well-being of heart failure patients and their caregivers. J Card Fail2002; 8(5): 300–305.
35.
FridlundB. Time for proper support for the next-of-kin of a patient who ha suffered a cardiac event. E J Cardiovasc Nurs2011; 10(3): 138–139.
36.
SmithCEMayerLSPerkinsSB. Caregiver learning needs and reactions to managing home mechanical ventilation. Heart Lung1994; 23(2): 157–163.
37.
TsaraVSerasliEVoutsasV. Burden and coping strategies in families of patients under noninvasive home mechanical ventilation. Respiration2006; 73(1): 61–67.
38.
DybwikKNielsenEWBrinchmannBS. Home mechanical ventilation and specialised health care in the community: between a rock and a hard place. BMC Health Serv Res2011; 11: 115.
