Skip to main content
 

Main menu

  • Home
  • Content
    • Current Issue
    • Editor's Commentary
    • Coming Next Month
    • Archives
    • Top 10 Papers in 2018
  • Authors
    • Author Guidelines
    • Submit a Manuscript
  • Reviewers
    • Reviewer Information
    • Create Reviewer Account
    • Appreciation of Reviewers
  • CRCE
    • Through the Journal
    • JournalCasts
    • AARC University
    • PowerPoint Template
  • Open Forum
    • Open Forum 2019
    • 2019 Abstracts
    • Previous Open Forums
  • Podcast
    • English
    • Español
    • Portugûes
    • 国语

User menu

  • Subscribe
  • My alerts
  • Log in

Search

  • Advanced search
American Association for Respiratory Care
  • Subscribe
  • My alerts
  • Log in
American Association for Respiratory Care

Advanced Search

  • Home
  • Content
    • Current Issue
    • Editor's Commentary
    • Coming Next Month
    • Archives
    • Top 10 Papers in 2018
  • Authors
    • Author Guidelines
    • Submit a Manuscript
  • Reviewers
    • Reviewer Information
    • Create Reviewer Account
    • Appreciation of Reviewers
  • CRCE
    • Through the Journal
    • JournalCasts
    • AARC University
    • PowerPoint Template
  • Open Forum
    • Open Forum 2019
    • 2019 Abstracts
    • Previous Open Forums
  • Podcast
    • English
    • Español
    • Portugûes
    • 国语
  • Follow aarc on Twitter
  • Visit aarc on Facebook
Review ArticleNarrative Review

Experiences of Individuals Awaiting Lung Transplantation

Ulrika Skogeland, Isabelle de Monestrol and Tove E Godskesen
Respiratory Care December 2018, 63 (12) 1535-1540; DOI: https://doi.org/10.4187/respcare.06401
Ulrika Skogeland
Stockholm CF Center Karolinska University Hospital, Stockholm, Sweden.
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Isabelle de Monestrol
Stockholm CF Center Karolinska University Hospital, Stockholm, Sweden.
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Tove E Godskesen
Ersta Sköndal Bräcke University College, Stockholm, Sweden.Centre for Research Ethics & Bioethics, Uppsala University, Sweden.
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • For correspondence: tove.godskesen@esh.se
  • Article
  • Figures & Data
  • Supplemental
  • References
  • Info & Metrics
  • PDF
Loading

Abstract

Lung transplantation is an established intervention for patients with advanced and life-threatening respiratory disease. Unfortunately, the shortage of organ donors results in a need for organs that greatly exceeds availability. This narrative review aimed to investigate the experiences of patients with respiratory diseases who wait for lung transplantation. Articles were retrieved from medical literature databases. Thirteen qualitative studies were reviewed, one of them used a mixed method. We found that individuals faced varied and complex situations differently while waiting for lung transplantations, depending on physical, psychological, social, and existential factors. Waiting gives hope for a future without the limitations imposed by the disease but also causes great stress. Many individuals struggled with the existential guilt associated with the privilege of having access to transplantation. This review highlighted that support from health-care professionals, next of kin, patients who had previously received a transplantation, and close friends have a vital role to play for individuals waiting for a lung transplantation.

  • respiratory diseases
  • lung transplantation
  • waiting list
  • experiences
  • palliative care

Introduction

Respiratory diseases impose enormous health burdens worldwide, not least disability and early death.1,2 Even though survival is prolonged with today's better management, the incidence of disease is increasing. According to the World Health Organization, COPD is the most common respiratory disease globally. This disease represents a growing problem in the world and is the second most common respiratory disease in the United States3,4 Other worldwide severe respiratory diseases are cystic fibrosis and interstitial lung disease.5–8 Some diseases are congenital, such as cystic fibrosis, whereas others can be acquired through smoking, such as COPD.9,10

Lung transplantation is an established intervention for patients with advanced and life-threatening respiratory disease for which standard medical treatment is no longer effective or for which there is no effective standard medical treatment.11 Three diseases that often necessitate lung transplantation are COPD, interstitial lung disease, and cystic fibrosis.12,13 COPD is the leading indication for lung transplantation worldwide and the second indication in the United States.4 The indication for lung transplantation is profound reduction in lung function and an expected survival of <2 years.12,14,15 In addition, worsening quality of life due to the disease can also indicate a need for lung transplantation.11,12,16–19

Before proceeding to a transplantation workup, the patient must meet certain criteria. Contraindications for transplantation include a lack of treatment adherence; malignancy; malnutrition; heart, kidney, and/or liver failure; untreated psychiatric illness; deformity of the chest wall; and lack of social support.11,13,20 In essence, being listed for lung transplantation means a chance to survive.11 However, there is a shortage of organ donors globally, and the need for organs greatly exceeds the availability.13,21–23 This results in long waiting times, and, in many cases, the patient dies before an organ becomes available, either as a result of complications of the underlying illness or because they become too weak to survive a transplantation (Table 1).20,24

View this table:
  • View inline
  • View popup
  • Download powerpoint
Table 1.

Statistics of the Number of Patients on the Waiting List at Year End 2016; Transplanted, Deceased, and on the Waiting List at Year End 2017

One dilemma faced by individuals with severely reduced lung function who are waiting for a lung transplantation is that they rarely receive palliative care. Results of studies show that treatment-oriented care provided for patients to sustain a lung transplantation is often prioritized.25–27 Thus, a patient waiting for a lung transplantation risks dying without having received palliative care or having discussed what he or she wants at the end of life.26,28 In many cases, palliative care is only offered when a transplantation has been ruled out and the patient has only a few weeks to live.20,29,30 If we are to understand how best to provide this type of care, we need to understand these patients' experiences while waiting for a lung transplantation. Thus, this narrative review aimed to investigate the experiences of patients with respiratory diseases while they waited for a lung transplantation.

Criteria for Selecting Studies

We analyzed and synthesized original scientific articles of study subjects' subjective experiences of waiting for a lung transplantation. We followed the literature review model described by Polit and Beck31 (Fig. 1).

Fig. 1.
  • Download figure
  • Open in new tab
  • Download powerpoint
Fig. 1.

Literature review model. From Reference 31.

Search Process

Stage 1. In accordance with the model of the literature review process31 the first step is to establish the aim of the review; in this case to describe patients' subjective experiences while waiting for lung transplantation.

Stage 2. In accordance with the model, key words, search strategies, databases, and inclusion and exclusion criteria were selected. Search strategies and databases were decided in consultation with a librarian, and the following 3 electronic databases were selected; PubMed, PsycINFO, and CINAHL. To ensure good-quality articles, the search strategy used the following inclusion criteria: (1) English language; (2) published in full text, after 2002; (3) qualitative and/or mixed method; (4) peer reviewed; (5) approved by an ethics review committee; and (6) covered experiences or conceptualization of waiting for a lung transplantation.32 Case reports and articles that studied this issue from a family's or relative's or health-care professionals' perspectives were excluded. The age of the study subjects was not an exclusion criterion. To achieve broad and relevant searches, all the searches in the databases used both database-specific topics and free text. Key words were used and combined in different variations by using Boolean operators (“and” and “or”) (see the supplementary materials at http://www.rcjournal.com).31,32

Stage 3. The searches resulted in a total of 2,525 articles (first selection). These potentially relevant articles were distributed in the various databases as follows: PubMed (2,345), PsycINFO (91), and CINAHL (89). Subsequently, their titles and abstracts were screened, which resulted in the exclusion of 2,415 articles because they did not match the inclusion criteria. The remaining articles formed the initial sample.

Stage 4. From this initial sample, 110 abstracts were reviewed. Of these articles, 87 were subsequently excluded due to duplication, quantitative design, the perspective was that of the family or relative or health-care professionals and not that of the patient, the abstract did not match the aim of the review, or because they included diagnoses other than respiratory diseases.

Stages 5 and 6. In the second sample, 23 relevant articles were reviewed and read in full text by one author (US). After reading, a summary, short sentences, codes, and key words were recorded. This method facilitated review of the content and acted as a guide for the final analysis phase. Ten articles were excluded after this review because their objectives did not correspond to the aim of this review (Fig. 2).

Fig. 2.
  • Download figure
  • Open in new tab
  • Download powerpoint
Fig. 2.

Flow chart.

Data Analysis

Stage 7. A critical quality review was performed according to Polit and Beck.31 By using a review template, one author (US) critically reviewed and evaluated all the remaining articles in accordance with a qualitative study review as described by Willman et al.32 Article validation provides a measure of the scientific quality of a study and its ability to answer a particular question reliably, which results in an increased body of evidence.32 All the items were scored in accordance with a review template in which “yes” received 1 point, and “no” and “do not know” received 0 points. If >70% of the questions were answered with “yes,” then the article was rated as medium quality, whereas articles that scored ≥80% were rated as high quality. Six articles thus were deemed to be of high quality, and 7 articles were of medium quality (see the supplementary materials at http://www.rcjournal.com).

Stage 8. This step involves the analysis phase. All data were categorized and compiled. Key words and sentences important for the purpose were marked and encoded in different colors. The first author (US) coded the findings from the primary studies, conceptualized the data, and inductively categorized concepts that pertained to patients' experiences of waiting for lung transplantation (Table 1).

Stage 9. The final step in the model is to make a condensed summary of the results.31 After analysis by 2 authors (US, TG), 3 main categories were identified.

Review of the Literature

The results of this narrative review were based on 13 articles: 12 using a qualitative method and 1 using a mixed method (see the supplementary materials at http://www.rcjournal.com). The studies were conducted in Sweden (3), the United Kingdom (3), Australia (2), Switzerland (2), Canada (1), Germany (1), and the United States (1). The subjects were between ages 15 and 68 y (mean age, 49 y).

Challenges for Subjects

The subjects often felt disappointment and frustration in anticipation of the lung transplantation.33–35 They also described feelings of insecurity and low mood.33–41 Activities previously taken for granted, which formed part of the subject's identity, became impossible to carry out and difficult to substitute. The subjects lacked both physical and mental energy. Some described a labile mood with an altered perception of themselves, their surroundings, and their future. The subjects almost completely lost the ability to feel joy.33,37,38,42 Depression, anxiety, and stress were experienced when the subjects were temporarily placed on hold status on the transplantation waiting list. This occurred when they had an infection or when a decline in respiratory function stabilized. The subjects became aware that lung transplantation was the only option to survive, and many described a fear of dying, which resulted in anxiety and depression.33,35,36,38,39,42–44

While waiting for lung transplantation, many subjects experienced concern and fear for the future. The subjects were worried about being unable to control their situation.34,35,38,39,42 Some subjects described that it was hard to cope with a feeling of total loneliness.36,39 For other subjects faith and trust in God helped them to cope with an uncertain future.34,35,40,41 Others described finding inner peace by surrendering their lives to God. This symbolized power and strength for them.39,42,43 Many subjects also struggled with feelings of guilt that were difficult to handle. They experienced guilt when given a place in the queue because others in need of a lung transplantation would not have the same chance. They could also feel guilty about the organ donor, because the donation is the result of someone dying. So, they grieved the fate of the donor as well as being concerned about the grief of the donor's relatives.39,45 Moreover, the subjects felt bad about what they put their own families through. They saw themselves as an economic burden on their family,34,37–39,43,45 and regretted their inability to help with household chores and other practical work at home.34,37,39,44

Sense of Security

Waiting for a lung transplantation created a sense of meaning for many subjects through hope, excitement, and confidence in the future.35–37,39,42 A desire to experience freedom, to be independent of others, and to manage breath without oxygen gave subjects a meaningful goal to fight for.33–37,39–41,43,45 The subjects reported a sense of security before surgery when told about other patients who had successfully received a transplantation.34,42 Other subjects described not only security but also gratitude at living in a country where transplantation is routinely performed and described high confidence in the medical teams who work with them.44 Organ donation was sometimes described as a gift that offers a continuing life of better quality.37,44

Support and information from health professionals were described as important while waiting for lung transplantation.33,34,37–42,44 The waiting time involved frequent visits to the transplantation unit where many subjects experienced friendly, unforced contact with the health-care professionals.33,35,38,40,44 Nursing support, empathy, positive thinking, and humor were perceived positively, and the opportunity to come into contact with the health-care staff at any time created a feeling of safety.34,40,41 Having the opportunity to meet other patients who have undergone a transplantation and to exchange experiences was often appreciated by subjects who were waiting for lung transplantation and made them feel hopeful for the future.34,38,42 Support, comfort, encouragement, and involvement from close relatives were also considered by most subjects to provide strength and energy.33,34,37–39,42,44 Some subjects had problems with memory during the waiting period, which affected them negatively. Subjects described difficulty taking in all of the information and appreciated that it was provided repeatedly.33,34,40,41

Limitations in Daily Life

Subjects waiting for a lung transplantation were often housebound and expressed frustration about not being able to travel as they wished or having to isolate themselves to avoid infections.35,36,39,44,45 The complex practicalities and the fear of infections meant that the subjects mostly socialized with friends via the internet and telephone rather than in person.33,36 Another limitation was that they always had to be ready for the transplantation. It could be very stressful waiting for the telephone call that they were anticipating so eagerly. They were afraid that they would miss the call about their potential transplantation and, therefore, felt unable to fully engage in other activities. These factors meant that they often withdrew socially.33,35,39,43,44

Inhalation therapy and physical activity were often described as stressful and meaningless.36,38,39 At the same time, they understood the importance of being in optimal physical condition to cope with the potential lung transplantation. During physical activity and inhalation therapy, many subjects described that they could very easily imagine how new healthy lungs could feel, when every step and breath would not limit everyday activities.36–41

Summary

Waiting for a lung transplantation is a complex situation. For many subjects the waiting list offered hope for a better survival outcome and expectation for normality without the limitations imposed by the disease. However, many subjects also experienced physical, psychological, and social obstacles and limitations in their daily life during this waiting period. Many subjects struggled with existential guilt associated with the privilege of having access to transplantation and their dependence on others. The treatment of subjects with cystic fibrosis and other patients with respiratory disease who were awaiting lung transplantation is highly challenging, therefore, palliative care is inherently complex.

These patients lie in the balance between successful transplantation or dying before a donor's lungs become available. It is no surprise, then, that there has long been practical tension between the cystic fibrosis medical care team and the palliative care team, the so-called “either/or approach”2,21,29,46,47 In an either/or approach, the patient with end-stage cystic fibrosis listed for lung transplantation is either treated with active life-prolonging medical care, such as lung transplantation, or with palliative care that is often introduced abruptly in the last days of life. The focus, however, has predominantly been on providing medical care.29,46 Because of this focus, discussion about initiating palliative care is often delayed until patients are too sick to participate in the conversation.17,27 For many patients and their families, recognizing that they have reached the end of their life can come as a shock.48

If, and when, palliative care should be discussed has been reviewed in a number of studies in terms of the timing of the discussions, the difficulties surrounding palliative care discussions,38,44 and appointing the most appropriate person in the medical team to initiate conversations regarding palliative care.34 Goggin and Cohen46 emphasize that health-care professionals do not always have sufficient knowledge of palliative care and, therefore, that they are unsure of how they should talk to patients about the end of life. Early integration of palliative care improves the quality of life of the patient and enhances palliative care, but the optimal timing and effective model for integrating palliative care for patients awaiting lung transplantation remain uncertain.49,50

Based on our findings, subjects struggled with psychological, existential, social, and physical challenges while waiting for lung transplantation. Still, palliative care was often introduced late or not at all. For those challenges to be met, end-of-life decision-making with patients and their families should be addressed earlier. To support this, basic skills and competencies in end-of-life conversations should ideally be further developed as part of the health-care education curriculum. In addition, communication training workshops for health-care professionals could be a tool because they have a difficult and stressful task to simultaneously provide hope and palliative care to patients with life-threatening respiratory diseases.

Acknowledgments

The authors thank Ingrid Andersson, librarian at Karolinska University Hospital for assistance and consultation during the literature search period. We also thank Emma Caffrey Osvald MD, for helpful suggestions and comments.

Footnotes

  • Correspondence: Tove E Godskesen RN PhD, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Box 11 189, Stigbergsgatan 30, SE-100 61 Stockholm, Sweden. E-mail: tove.godskesen{at}esh.se.
  • The authors have disclosed no conflicts of interest.

  • Presented as a student paper at Ersta Sköndal Bräcke University College.

  • Supplementary material related to this paper is available at http://www.rcjournal.

  • Copyright © 2018 by Daedalus Enterprises

References

  1. 1.↵
    1. Murphy SL,
    2. Xu J,
    3. Kochanek KD,
    4. Curtin SC,
    5. Arias E
    . Deaths: final data for 2015. Natl Vital Stat Rep 2017;66(6):1–75.
    OpenUrlPubMed
  2. 2.↵
    1. Harrington SE,
    2. Rogers E,
    3. Davis M
    . Palliative care and chronic obstructive pulmonary disease: where the lines meet. Curr Opin Pulm Med 2017;23(2):154–160.
    OpenUrl
  3. 3.↵
    World Health Organization. The Global Impact of Respiratory Disease. Second Edition. Forum of International Respiratory Societies. Geneva: World Health Organization; 2017. http://www.who.int/gard/publications/The_Global_Impact_of_Respiratory_Disease.pdf. Accessed June 20, 2018.
  4. 4.↵
    1. Siddiqui FM,
    2. Diamond JM
    . Lung transplantation for chronic obstructive pulmonary disease: past, present, and future directions. Curr Opin Pulm Med 2018;24(2):199–204.
    OpenUrl
  5. 5.↵
    1. Sundblad BM,
    2. Jansson SA,
    3. Nyström L,
    4. Arvidsson P,
    5. Lundbäck B,
    6. Larsson K
    . Chronic obstructive pulmonary disease (COPD) during the two last years of life–a retrospective study of decedents. PLoS One 2013;8(12):e84110.
    OpenUrl
  6. 6.
    1. Shaw J,
    2. Marshall T,
    3. Morris H,
    4. Hayton C,
    5. Chaudhuri N
    . Idiopathic pulmonary fibrosis: a holistic approach to disease management in the antifibrotic age. J Thoracic Dis 2017;9(11):4700–4707.
    OpenUrl
  7. 7.
    1. Cosgrove GP,
    2. Bianchi P,
    3. Danese S,
    4. Lederer DJ
    . Barriers to timely diagnosis of interstitial lung disease in the real world: the INTENSITY survey. BMC Pulm Med 2018;18(1):9.
    OpenUrl
  8. 8.↵
    1. Gilljam M,
    2. Nyström U,
    3. Dellgren G,
    4. Skog I,
    5. Hansson L
    . Survival after lung transplantation for cystic fibrosis in Swedendagger. Eur J Cardiothorac Surg 2017;51(3):571–576.
    OpenUrl
  9. 9.↵
    1. Colarusso C,
    2. Terlizzi M,
    3. Molino A,
    4. Pinto A,
    5. Sorrentino R
    . Role of the inflammasome in chronic obstructive pulmonary disease (COPD). Oncotarget 2017;8(47):81813–81824.
    OpenUrl
  10. 10.↵
    1. Pauwels RA,
    2. Rabe KF
    . Burden and clinical features of chronic obstructive pulmonary disease (COPD). Lancet 2004;364(9434):613–620.
    OpenUrlCrossRefPubMed
  11. 11.↵
    1. Orens JB,
    2. Estenne M,
    3. Arcasoy S,
    4. Conte JV,
    5. Corris P,
    6. Egan JJ,
    7. et al
    ; Pulmonary Scientific Council of the International Society for Heart and Lung Transplantation. International guidelines for the selection of lung transplant candidates: 2006 update—a consensus report from the Pulmonary Scientific Council of the International Society for Heart and Lung Transplantation. J Heart Lung Transplant 2006;25(7):745–755.
    OpenUrlCrossRefPubMed
  12. 12.↵
    1. Weill D,
    2. Benden C,
    3. Corris PA,
    4. Dark JH,
    5. Davis RD,
    6. Keshavjee S,
    7. et al
    . A consensus document for the selection of lung transplant candidates: 2014–an update from the Pulmonary Transplantation Council of the International Society for Heart and Lung Transplantation. J Heart Lung Transplant 2015;34(1):1–15.
    OpenUrlCrossRefPubMed
  13. 13.↵
    1. Hartert M,
    2. Senbaklavacin O,
    3. Gohrbandt B,
    4. Fischer BM,
    5. Buhl R,
    6. Vahld CF
    . Lung transplantation: a treatment option in end-stage lung disease. Dtsch Arztebl Int 2014;111(7):107–116.
    OpenUrlPubMed
  14. 14.↵
    1. Smyth AR,
    2. Bell SC,
    3. Bojcin S,
    4. Bryon M,
    5. Duff A,
    6. Flume P,
    7. et al
    ; European Cystic Fibrosis Society. European Cystic Fibrosis Society Standards of Care: Best Practice guidelines. J Cyst Fibros 2014;13(Suppl 1):S23–S42.
    OpenUrlCrossRefPubMed
  15. 15.↵
    1. Belkin RA,
    2. Henig NR,
    3. Singer LG,
    4. Chaparro C,
    5. Rubenstein RC,
    6. Xie SX,
    7. et al
    . Risk factors for death of patients with cystic fibrosis awaiting lung transplantation. Am J Respir Crit Care Med 2006;173(6):659–666.
    OpenUrlCrossRefPubMed
  16. 16.↵
    1. De Meester J,
    2. Smits JM,
    3. Persijn GG,
    4. Haverich A
    . Listing for lung transplantation: life expectancy and transplant effect, stratified by type of end-stage lung disease, the Eurotransplant experience. J Heart Lung Transplant 2001;20(5):518–524.
    OpenUrlCrossRefPubMed
  17. 17.↵
    1. Dellon EP,
    2. Leigh MW,
    3. Yankaskas JR,
    4. Noah TL
    . Effects of lung transplantation on inpatient end of life care in cystic fibrosis. J Cystic Fibros 2007;6(6):396–402.
    OpenUrl
  18. 18.
    1. O'Sullivan BP,
    2. Freedman SD
    . Cystic fibrosis. Lancet 2009;373(9678):1891–1904.
    OpenUrlCrossRefPubMed
  19. 19.↵
    1. Yorke J,
    2. Parle M,
    3. James M,
    4. Gay T,
    5. Harkess M,
    6. Glanville A
    . Lung transplantation in adolescents and young adults with cystic fibrosis. Prog Transplant 2006;16(4):343–349.
    OpenUrl
  20. 20.↵
    1. Colman RE,
    2. Curtis JR,
    3. Nelson JE,
    4. Efferen L,
    5. Hadjiliadia D,
    6. Levine DJ,
    7. et al
    . Barriers to optimal palliative care of lung transplant candidates. Chest 2013;143(3):736–743.
    OpenUrlCrossRefPubMed
  21. 21.↵
    1. Braithwaite M,
    2. Philip J,
    3. Tranberg H,
    4. Finlayson F,
    5. Gold M,
    6. Kotsimbos T,
    7. Wilson J
    . End of life care in CF: patients, families and staff experiences and unmet needs. J Cystic Fibros 2011;10(4):253–257.
    OpenUrl
  22. 22.
    1. Higo H,
    2. Kurosaki T,
    3. Ichihara E,
    4. Kubo T,
    5. Miyoshi K,
    6. Otani S,
    7. et al
    . Clinical characteristics of Japanese candidates for lung transplant for interstitial lung disease and risk factors for early death while on the waiting list. Respir Investig 2017;55(4):264–269.
    OpenUrl
  23. 23.↵
    1. Paik HC,
    2. Haam SJ,
    3. Lee DY,
    4. Yi GJ,
    5. Song SW,
    6. Kim YT,
    7. et al
    . The fate of patients on the waiting list for lung transplantation in Korea. Transplant Proc 2012;44(4):865–869.
    OpenUrlPubMed
  24. 24.↵
    1. Dellon EP,
    2. Chen E,
    3. Goggin J,
    4. Homa K,
    5. Marshall BC,
    6. Sabadosa KA,
    7. Cohen RI
    . Advance care planning in cystic fibrosis: Current practices, challenges, and opportunities. J Cystic Fibros 2016;15(1):96–101.
    OpenUrl
  25. 25.↵
    1. Rosenberger EM,
    2. Dew MA,
    3. DiMartini AF,
    4. DeVito Dabbs AJ,
    5. Yusen RD
    . Psychosocial issues facing lung transplant candidates, recipients and family caregivers. Thorac Surg Clin 2012;22(4):517–529.
    OpenUrlPubMed
  26. 26.↵
    1. Sands D,
    2. Repetto T,
    3. Dupont LJ,
    4. Korzeniewska-Eksterowicz A,
    5. Catastini P,
    6. Madge S
    . End of life care for patients with cystic fibrosis. J Cystic Fibros 2011;10(Suppl 2):S37–S44.
    OpenUrl
  27. 27.↵
    1. Ford D,
    2. Flume PA
    . Impact of lung transplantation on site of death in cystic fibrosis. J Cystic Fibros 2007;6(6):391–395.
    OpenUrl
  28. 28.↵
    1. Clisby N,
    2. Shaw S,
    3. Cormack M
    . Psychological impact of working with patients with cystic fibrosis at end-of-life, pre-transplant stage. Palliat Support Care 2013;11(2):111–121.
    OpenUrl
  29. 29.↵
    1. Janssen DJ,
    2. Spruit MA,
    3. Does JD,
    4. Schols JM,
    5. Wouters EF
    . End-of-life care in a COPD patient awaiting lung transplantation: a case report. BMC Palliat Care 2010;9:6.
    OpenUrlCrossRefPubMed
  30. 30.↵
    1. Karlekar M,
    2. Doherty KE,
    3. Guyer D,
    4. Slovis B
    . Integration of palliative care into the routine care of cystic fibrosis patients. Palliat Med 2015;29(3):282–283.
    OpenUrlCrossRefPubMed
  31. 31.↵
    1. Polit DF,
    2. Beck CT
    . Nursing research: generating and assessing evidence for nursing practice. Philadelphia: Wolters Kluwer; 2016.
  32. 32.↵
    1. Willman A,
    2. Stoltz P,
    3. Bahtsevani C
    . Evidensbaserad omvårdnad: en bro mellan forskning & klinisk verksamhet [Evidence-Based Nursing Care: A Bridge Between Research and Practice]. Lund: Studentlitteratur; 2011.
  33. 33.↵
    1. Ivarsson B,
    2. Ekmehag B,
    3. Sjöberg T
    . Recently accepted for the waiting list for heart or lung transplantation—patients' experiences of information and support. Clin Transplant 2011;25(6):E664–E671.
    OpenUrlCrossRefPubMed
  34. 34.↵
    1. Ivarsson B,
    2. Ekmehag B,
    3. Sjöberg T
    . Heart or lung transplanted patients' retrospective views on information and support while waiting for transplantation. J Clin Nurs 2013;22(11-12):1620–1628.
    OpenUrl
  35. 35.↵
    1. Macdonald K
    . Living in limbo–patients with cystic fibrosis waiting for transplant. Br J Nurs 2006;15(10):566–572.
    OpenUrlCrossRefPubMed
  36. 36.↵
    1. Anderson SM,
    2. Wray J,
    3. Ralph A,
    4. Spencer H,
    5. Lunnon-Wood T,
    6. Gannon K
    . Experiences of adolescent lung transplant recipients: A qualitative study. Pediatr Transplant 2017;21(3). doi: 10.1111/petr.12878.
    OpenUrlCrossRef
  37. 37.↵
    1. Brügger A,
    2. Aubert JD,
    3. Piot-Ziegler C
    . Emotions while awaiting lung transplantation: A comprehensive qualitative analysis. Health Psychol Open 2014;1(1):2055102914561272.
  38. 38.↵
    1. Duck A,
    2. Spencer LG,
    3. Bailey S,
    4. Leonard C,
    5. Ormes J,
    6. Caress AL
    . Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis. J Adv Nurs 2015;71(5):1055–1065.
    OpenUrlCrossRefPubMed
  39. 39.↵
    1. Yelle MT,
    2. Stevens PE,
    3. Lanuza DM
    . Waiting narratives of lung transplant candidates. Nurs Res Pract 2013;2013;794698.
  40. 40.↵
    1. Yorke J,
    2. Cameron-Traub E
    . Patients' perceived care needs whilst waiting for a heart or lung transplant. J Clin Nurs 2008;17(5A):78–87.
    OpenUrlPubMed
  41. 41.↵
    1. Yorke J,
    2. Cameron-Traub E
    . What aspects of nursing care are important to patients on a heart and lung transplant waiting list? Transplant Nurses J 2009;18(1):25–28.
    OpenUrl
  42. 42.↵
    1. Naef R,
    2. Bournes DA
    . The lived experience of waiting: a Parse method study. Nurs Sci Q 2009;22(2):141–153.
    OpenUrlCrossRefPubMed
  43. 43.↵
    1. Moloney S,
    2. Cicutto L,
    3. Hutcheon M,
    4. Singer L
    . Deciding about lung transplantation: informational needs of patients and support persons. Prog Transplant 2007;17(3):183–192.
    OpenUrlCrossRefPubMed
  44. 44.↵
    1. Ivarsson B,
    2. Ingemasson R,
    3. Sjöberg T
    . Experiences of supportive care when waiting for a lung re-transplantation. SAGE Open Med 2017;5:2050312117697151.
  45. 45.↵
    1. Ullrich G,
    2. Schmidt S,
    3. Scharf E,
    4. Penkert J,
    5. Niedermeyer J,
    6. Schulz W
    . Lung transplant recipients' views on the integration of their new organs. Disabil Rehabil 2010;32(9):713–722.
    OpenUrlPubMed
  46. 46.↵
    1. Goggin J,
    2. Cohen RI
    . CF healthcare workers feel unprepared in providing suitable end of life care and desire more education: Results of a nationwide survey. J Cyst Fibros 2016;15(1):85–89.
    OpenUrl
  47. 47.↵
    1. Bourke SJ,
    2. Booth Z,
    3. Doe S,
    4. Anderson A,
    5. Rice S,
    6. Gascoigne A
    , Quibell Rservice evaluation of an integrated model of palliative care of cystic fibrosis. Palliat Med 2016;30(7):698–702.
    OpenUrlCrossRefPubMed
  48. 48.↵
    1. Linnemann RW,
    2. O'Malley PJ,
    3. Friedman D,
    4. Georgiopoulos AM,
    5. Buxton D,
    6. Altstein LL,
    7. et al
    . Development and evaluation of a palliative care curriculum for cystic fibrosis healthcare providers. J Cystic Fibros 2016;15(1):90–95.
    OpenUrl
  49. 49.↵
    1. Block SD,
    2. Billings JA
    . A need for scalable outpatient palliative care interventions. Lancet 2014;383(9930):1699–1700.
    OpenUrlCrossRefPubMed
  50. 50.↵
    1. Howell D
    . It is unclear whether specialist palliative care teleconsultation leads to an improvement in patient symptom scores. Evid Based Nurs 2018;21(1):1.
    OpenUrlFREE Full Text
View Abstract
PreviousNext
Back to top

In this issue

Respiratory Care: 63 (12)
Respiratory Care
Vol. 63, Issue 12
1 Dec 2018
  • Table of Contents
  • Table of Contents (PDF)
  • Cover (PDF)
  • Index by author
Print
Download PDF
Article Alerts
Sign In to Email Alerts with your Email Address
Email Article

Thank you for your interest in spreading the word on American Association for Respiratory Care.

NOTE: We only request your email address so that the person you are recommending the page to knows that you wanted them to see it, and that it is not junk mail. We do not capture any email address.

Enter multiple addresses on separate lines or separate them with commas.
Experiences of Individuals Awaiting Lung Transplantation
(Your Name) has sent you a message from American Association for Respiratory Care
(Your Name) thought you would like to see the American Association for Respiratory Care web site.
Citation Tools
Experiences of Individuals Awaiting Lung Transplantation
Ulrika Skogeland, Isabelle de Monestrol, Tove E Godskesen
Respiratory Care Dec 2018, 63 (12) 1535-1540; DOI: 10.4187/respcare.06401

Citation Manager Formats

  • BibTeX
  • Bookends
  • EasyBib
  • EndNote (tagged)
  • EndNote 8 (xml)
  • Medlars
  • Mendeley
  • Papers
  • RefWorks Tagged
  • Ref Manager
  • RIS
  • Zotero

Share
Experiences of Individuals Awaiting Lung Transplantation
Ulrika Skogeland, Isabelle de Monestrol, Tove E Godskesen
Respiratory Care Dec 2018, 63 (12) 1535-1540; DOI: 10.4187/respcare.06401
del.icio.us logo Digg logo Reddit logo Twitter logo CiteULike logo Facebook logo Google logo Mendeley logo
  • Tweet Widget
  • Facebook Like
  • Google Plus One

Jump to section

  • Article
    • Abstract
    • Introduction
    • Criteria for Selecting Studies
    • Review of the Literature
    • Summary
    • Acknowledgments
    • Footnotes
    • References
  • Figures & Data
  • Supplemental
  • Info & Metrics
  • References
  • PDF

Related Articles

Cited By...

Keywords

  • respiratory diseases
  • lung transplantation
  • waiting list
  • experiences
  • palliative care

Info For

  • Subscribers
  • Institutions
  • Advertisers

About Us

  • About Us
  • Editorial Board
  • Reprints/Permissions

AARC

  • Membership
  • Meetings
  • Clinical Practice Guidelines

More

  • Contact Us
  • RSS
American Association for Respiratory Care

Print ISSN: 0020-1324        Online ISSN: 1943-3654

© The Journal Respiratory Care Company

Powered by HighWire