Information is essential for informed decision making. To date, the informational needs of patients and support persons making the lung transplant decision are unexplored; in addition, the role of support persons in the transplant decision is unknown.
Objective
To identify the informational needs of patients and support persons attending a transplant clinic for consultation on lung transplantation, and to identify the involvement of support persons in the decision.
Design
A qualitative descriptive study and qualitative content analysis. Setting—Participants were recruited from the Toronto General Hospital Lung Transplant Program.
Participants
Twenty-two patients (8 candidates, 14 recipients) and 16 support persons.
Results
Most patients made the lung transplant decision in collaboration with their support person and reported receiving adequate information to make an informed decision. Diverse learning needs were identified among and between patients and support persons. Many participants identified the need for more information on practical issues, life after transplantation, and the experiences of transplant recipients.
Conclusion
Most patients attending a transplant clinic for consultation on lung transplantation felt they made an informed decision; however, modifications to the content, timing, and ways of providing information could enhance the decision-making process for patients and support persons. Specifically, the transplant team can provide information on core lung transplant topics with access to supplementary information to meet specific needs and use materials that vary in source, formats, and time points during the decision-making period.
TrulockEPEdwardsLBTaylorDOBoucekMMKeckBMHertzMI. Registry of the International Society for Heart and Lung Transplantation: Twenty-Second Official Adult Lung and Heart-Lung Transplant Report. J Heart Lung Transplant.2005;24(8):956–967.
4.
RodrigueJRBazMAKanaskyWFJrMacNaughtonKL. Does lung transplantation improve health-related quality of life? The University of Florida experience. J Heart Lung Transplant.2005;24(6):755–763.
5.
SmeritschnigBJakschPKocherA. Quality of life after lung transplantation: A cross-sectional study. J Heart Lung Transplant.2005;24(4):474–480.
6.
KuglerCFischerSGottliebJ. Health-related quality of life in two hundred-eighty lung transplant recipients. J Heart Lung Transplant.2005;24(12):2262–2268.
7.
StuderSMLevyRDMcNeilKOrensJB. Lung transplant outcomes: A review of survival, graft function, physiology, health-related quality of life and cost-effectiveness. Eur Respir J.2004;24(4):674–685.
8.
OlbrischMEBenedictSMAsheKLevensonJL. Psychological assessment and care of organ transplant patients. J Consult Clin Psychol.2002;70(3):771–783.
9.
CharlesCGafniAWhelanT. Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Soc Sci Med.1997;44(5):681–692.
10.
GallowaySGraydonJHarrisonD. Informational needs of women with a recent diagnosis of breast cancer: Development and initial testing of a tool. J Adv Nurs.1997;25(6):1175–1183.
11.
WilkinsFBozikKBennettK. The impact of patient education and psychosocial supports on return to normalcy 36 months post-kidney transplant. Clin Transplant.2003;17(suppl 9):78–80.
12.
WatermanAD. Living donation decision-making: Recipients' concerns and educational needs. Prog Transplant.2006;16(1):17–23.
13.
HindsCStreaterAMoodD. Functions and preferred methods of receiving information related to radiotherapy: Perceptions of patients with cancer. Cancer Nurs.1995;18(5):374–384.
14.
DegnerLFKristjansonLJBowmanD. Information needs and decisional preferences in women with breast cancer. JAMA.1997;277(18):1485–1492.
15.
DavidsonJRBrundageMDFeldman-StewartD. Lung cancer treatment decisions: Patients' desires for participation and information. Psychooncology.1999;8(6):511–520.
16.
Feldman-StewartDBrundageMDHayterC. What questions do patients with curable prostate cancer want answered?Med Decis Making.2000;20(1):7–19.
17.
O'ConnorAMDrakeERWellsGATugwellPLaupacisAElmslieT. A survey of the decision-making needs of Canadians faced with complex health decisions. Health Expect.2003;6(2):97–109.
18.
WattS. Clinical decision-making in the context of chronic illness. Health Expect.2000;3(3):6–16.
19.
Feldman-StewartDBrundageMDMackillopWJ. What questions do families of patients with early-stage prostate cancer want answered?J Fam Nurs.2001;7:188–207.
20.
FeltwellAKReesCE. The information-seeking behaviors of partners of men with prostate cancer: A qualitative pilot study. Patient Educ Couns.2004;54(2):179–185.
21.
ReesCEBathPA. The information needs and source preferences of women with breast cancer and their family members: A review of the literature published between 1988 and 1998. J Adv Nurs.2000;31(4):833–841.
22.
UllrichG. Consulting the “experts”: A pilot study on perceptions of professional support among lung transplant recipients and accompanying relatives. Prog Transplant.2005;15(2):115–122.
23.
SandelowskiM. Whatever happened to qualitative description?Res Nurs Health.2000;23(4):334–340.
24.
SturgesJEHanrahanKJ. Comparing telephone and face-to-face qualitative interviewing: A research note. Qual Res.2004;4:107–118.
25.
MayanMJ. An Introduction to Qualitative Methods: A Training Module for Students and ProfessionalsEdmonton, Alberta: Qual Institute Press; International Institute for Qualitative Methodology; 2001.
26.
SrirangamSJPearsonEGroseCBrownSCWCollinsGNO'ReillyPH. Partner's influence on patient preference for treatment in early prostate cancer. BJU Int.2003;92(4):365–369.
27.
ZhangAYSiminoffLA. The role of the family in treatment decision making by patients with cancer. Oncol Nurs Forum.2003;30(6):1022–1028.
28.
LeydonGMBoultonMMoynihanC. Faith, hope, and charity: An in-depth interview study of cancer patients' information needs and information-seeking behavior. BMJ.2000;320:909–913.
29.
LlewellynCDMcGurkMWeinmanJ. How satisfied are head and neck (HNC) patients with the information they receive pre-treatment? Results from the satisfaction with cancer information profile (SCIP). Oral Oncol.2006;42(7):726–734.
30.
RozmovitsLZieblandS. What do patients with prostate or breast cancer want from an internet site? A qualitative study of information needs. Patient Educ Couns.2004;53(1):57–64.
31.
ChenXSiuLL. Impact of the media and the internet on oncology: Survey of cancer patients and oncologists in Canada. J Clin Oncol.2001;19(23):4291–4297.
32.
PetersonMWFretzPC. Patient use of the internet for information in a lung cancer clinic. Chest.2003;123(2):452–457.
33.
ZieblandSChappleADumelowCEvansJPrinjhaSRozmovitsL. How the internet affects patients' experience of cancer: A qualitative study. BMJ.2004;328(7439):564–569.
34.
Kelly-PowellML. Personalizing choices: Patients' experiences with making treatment decisions. Res Nurs Health.1997;20:219–227.
35.
UllrichGJanschHSchmidtSStruberMNiedermeyerJ. The experience of the support person involved in a lung transplant programme: Results of a pilot study. Eur J Med Res.2004;9(12):555–652.
36.
WainwrightSP. The transformational experience of liver transplantation. J Adv Nurs.1995;22(6):1068–1076.
37.
WrightLPenningtonJJAbbeySYoungEHainesJRossH. Evaluation of a mentorship program for heart transplant patients. J Heart Lung Transplant.2001;20(9):1030–1033.
38.
UbelPAJepsonCBaronJ. The inclusion of patient testimonials in decision aids: Effects on treatment choices. Med Decis Making.2001;21(3):60–68.
39.
JeffordMTattersallMHN. Informing and involving cancer patients in their own care. Lancet Oncol.2002;3(10):629–637.
40.
McPhersonCJHigginsonIJHearnJ. Effective methods of giving information in cancer: A systematic literature review of randomized controlled trials. J Public Health Med.2001;23(3):227–234.
41.
RamirezAFRichardsGJGReesWM. Effective communication in oncology. J Cancer Care.1994;3:84–93.
42.
Feldman-StewartDBrundageMDNickelJCMackillopWJ. The information required by patients with early-stage prostate cancer in choosing their treatment. BJU Int.2001;87(3):218–223.
43.
NormanDABobrowDG. On data-limited and resource limited processes. Cognit Psychol.1975;7:44–64.
44.
HerthK. Fostering hope in terminally-ill people. J Adv Nurs.1990;15(11):1250–1259.
45.
Wong-WylieGJeuneRF. Patient hope: Exploring the interactions between physicians and HIV seropositive individuals. Qual Health Res.1997;7:32–56.
46.
SilvestriGAKnittigSZollerJSNietertPJ. Importance of faith on medical decisions regarding cancer care. J Clin Oncol.2003;21(7):1379–1382.
47.
BackALArnoldRMQuillTE. Hope for the best, and prepare for the worst. Ann Intern Med.2003;138(5):439–443.
