Skip to main content

Main menu

  • Home
  • Current issue
  • Past issues
  • Authors/reviewers
    • Instructions for authors
    • Submit a manuscript
    • COVID-19 submission information
    • Institutional open access agreements
    • Peer reviewer login
  • Alerts
  • Subscriptions
  • ERS Publications
    • European Respiratory Journal
    • ERJ Open Research
    • European Respiratory Review
    • Breathe
    • ERS Books
    • ERS publications home

User menu

  • Log in
  • Subscribe
  • Contact Us
  • My Cart

Search

  • Advanced search
  • ERS Publications
    • European Respiratory Journal
    • ERJ Open Research
    • European Respiratory Review
    • Breathe
    • ERS Books
    • ERS publications home

Login

European Respiratory Society

Advanced Search

  • Home
  • Current issue
  • Past issues
  • Authors/reviewers
    • Instructions for authors
    • Submit a manuscript
    • COVID-19 submission information
    • Institutional open access agreements
    • Peer reviewer login
  • Alerts
  • Subscriptions

The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review

Joanna Y.T. Lee, Gabriella Tikellis, Tamera J. Corte, Nicole S. Goh, Gregory J. Keir, Lissa Spencer, Debra Sandford, Yet H. Khor, Ian Glaspole, John Price, Alison J. Hey-Cunningham, Jamie Maloney, Alan K.Y. Teoh, Alice L. Watson, Anne E. Holland
European Respiratory Review 2020 29: 190125; DOI: 10.1183/16000617.0125-2019
Joanna Y.T. Lee
1Physiotherapy, La Trobe University, Melbourne, Australia
2Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australia
3NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • ORCID record for Joanna Y.T. Lee
Gabriella Tikellis
1Physiotherapy, La Trobe University, Melbourne, Australia
2Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australia
3NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Tamera J. Corte
3NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia
4The University of Sydney, Sydney, Australia
5Respiratory Medicine, Royal Prince Alfred Hospital, Camperdown, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Nicole S. Goh
6Austin Health, Heidelberg, Australia
7Institute for Breathing and Sleep, Melbourne, Australia
8Alfred Health, Melbourne, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Gregory J. Keir
9Princess Alexandra Hospital, Woolloongabba, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Lissa Spencer
4The University of Sydney, Sydney, Australia
10Royal Prince Alfred Hospital, Camperdown, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Debra Sandford
11Royal Adelaide Hospital, Adelaide, Australia
12The University of Adelaide, Adelaide, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Yet H. Khor
6Austin Health, Heidelberg, Australia
7Institute for Breathing and Sleep, Melbourne, Australia
8Alfred Health, Melbourne, Australia
13University of Melbourne, Melbourne, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • ORCID record for Yet H. Khor
Ian Glaspole
2Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australia
3NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia
8Alfred Health, Melbourne, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • ORCID record for Ian Glaspole
John Price
14Institute for Respiratory Health, Nedlands, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Alison J. Hey-Cunningham
3NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia
4The University of Sydney, Sydney, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Jamie Maloney
15Lung Foundation Australia, Brisbane, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Alan K.Y. Teoh
3NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia
4The University of Sydney, Sydney, Australia
5Respiratory Medicine, Royal Prince Alfred Hospital, Camperdown, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Alice L. Watson
1Physiotherapy, La Trobe University, Melbourne, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Anne E. Holland
1Physiotherapy, La Trobe University, Melbourne, Australia
2Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australia
3NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia
7Institute for Breathing and Sleep, Melbourne, Australia
8Alfred Health, Melbourne, Australia
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • ORCID record for Anne E. Holland
  • For correspondence: a.holland@alfred.org.au
  • Article
  • Figures & Data
  • Info & Metrics
  • PDF
Loading

Figures

  • Tables
  • Supplementary Materials
  • FIGURE 1
    • Download figure
    • Open in new tab
    • Download powerpoint
    FIGURE 1

    PRISMA flow diagram.

Tables

  • Figures
  • Supplementary Materials
  • TABLE 1

    Summary of supportive care needs: physical/cognitive and psychosocial/emotional domains

    Needs domain and category Studies nIndividual reporting needRepresentative quotes
    PatientCaregiver
    Physical/cognitive#“Coughing! Coughing! People would ask why didn't you go to a different bedroom so you didn't have to hear the cough, but I would feel bad, I couldn't tell him. I was going to work on 2–3 h of sleep” (caregiver of a deceased patient) [20]
    “When it's really really bad, I'd make a trade with the devil … because I'm so … flat and exhausted and [I] think well I'd rather not go on” (patient with advanced IPF) [3]
    “The side-effects were making me feel more sick than my life. I couldn't go out, I couldn't catch a tram, for instance, because you never knew when you were going to explode. I felt sick, lost weight and felt nauseous and I still persevered” (patient with IPF using antifibrotic therapy) [16]
     Cough13
     Dyspnoea9
     Fatigue9
     Management of treatment side-effects5
     Physical limitation5
     Poor sleep3
     Phlegm2
     Incontinence1
    Psychosocial/emotional¶“You know, it's just … really frustrating to tell you the truth, these things are happening to my body … that I can't do anything about it [higher pitched voice]” (patient with IPF) [25]
    “What am I going to do with the rest of my life without my husband? It's pretty scary. We've been married for 58 years” (caregiver of patient with IPF) [13]
    “You're not free, can't laugh or cry fully because if you do you won't be able to breathe even with oxygen – that is terrible and upsetting. Also being tied to oxygen makes you feel like stuck you're inside the cage” (patient with IPF) [1]
    “I'm confused, because I become this caregiver that isn't giving any care, but more of a nag” (caregiver of patient with IPF) [23]
    “I think the most shocking thing is how quickly, even though maybe people have been told you've got 3 months, 6 months, whatever months. I think when that day actually comes it's probably always a shock. The Tuesday we saw her with a team of doctors and Sunday she was gone” (bereaved caregiver) [32]
    “Sometimes I feel ashamed about the things I can't do” (patient with IPF) [34]
    “I do get frustrated when it physically affects me, not being able to do things that I planned to do” (patient with IPF) [34]
     Anger, frustration11
     Anxiety9
     Sadness, grief9
     Fear of future8
     Depression8
     Shock7
     Loss of identity/sense of self6
     Fear of being a burden on others5
     Loss of control, powerlessness4
     Feeling overwhelmed, helpless5
     Denial4
     Guilt4
     Panic3
     Loneliness3
     Confusion, resentment3
     Difficulty maintaining hope and optimism2
     Feeling of shame, embarrassment2
     Fixating on the disease2
     Feeling vulnerable2
     Feeling insecure1
     Self-pity1
     Regret1
     Burn out1

    Shading indicates where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=16; ¶: n=22.

    • TABLE 2

      Summary of supportive care needs: family-related, social/societal and interpersonal/intimacy domains

      Needs domain and category Studies nIndividual reporting needRepresentative quotes
      PatientCaregiver
      Family-related#“What has suffered is my relationships more with my family and my friends, because I'm just busy [being a caregiver to my husband with IPF] all the time” (caregiver of patient with IPF) [13]
      “My family checks everything I do, I don't feel free” (patient with IPF using pirfenidone) [8]
      “Eventually she is talking about us moving downstairs and staying downstairs once it gets to a certain point – well, I don't want that. I'd rather take 10 min to go upstairs to go to bed than staying downstairs all the time” (patient with IPF) [34]
       Increased physical/practical burden on caregiver9
       Change in caregiver lifestyle/role7
       Loss of role within family5
       Increased reliance on family4
       Living at a different pace to family2
       Loss of privacy due to need of assistance2
       Different expectations between patient and family2
       Unable to travel with family1
       Fear of passing a genetic disease on to family1
       Family takes over decisions about lifestyle1
      Social/societal¶“I am trading from one stigma for another, because, you know, I've heard people say, “Well he's on oxygen because he was a smoker” (patient with IPF) [26]
      “I can't go anywhere … I don't [really] have a life, I'm sitting indoors every day” (patient with advanced IPF) [3]
      “When people see you coughing they say “Take cough medicine, take this, take that”, they don't understand it … and they would say, “Why you are panting when you are doing nothing literally?” (patient with IPF) [34]
       Stigma/lack of community understanding12
       Social isolation5
       Go out less/fewer social opportunities4
       Difficulty maintaining relationships2
      Interpersonal/intimacy+“[W]e're not intimate at the moment [higher pitched voice] … we don't even talk about it, we just sort of blank it out because I just don't have the will or the energy to do [slight laugh] anything …. Having intercourse, you know and you know, making love with each other and that sort of thing, yeah … I just don't have the energy but … we just don't talk about it” (patient with IPF) [3]
       Loss of sexual intimacy4
       Altered body image/sexuality3

      Shading indicate where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=14; ¶: n=17; +: n=4.

      • TABLE 3

        Summary of supportive care needs: practical/daily living and information/education domains

        Needs domain and category Studies nIndividual reporting needRepresentative quotes
        PatientCaregiver
        Practical/daily living#“He can't bend over. If he bends over, forget it. So I empty out the bottom of the dishwasher. He empties the top, because he likes to participate” (caregiver of patient with IPF) [13]
        “Even showering becomes a problem; you do it in stages. And someone has to be here” (patient with IPF) [18]
        “… just the inconvenience of it all (oxygen therapy) and the stupid line all over the house, and I trip on, because it's always – my leash, as my husband calls it” (patient with IPF using oxygen for 9–12 months) [26]
        “If there was a plan, if we knew what was going on, then we could make decisions…. There are no standard procedures for end-of-life decision makers” (advocate) [15]
         Loss of independence/decreased ability to perform activities of daily living9
         Financial burden/loss of income7
         End-of-life planning (insufficient information/do not have a plan)7
         Requiring more time, planning and adaptation both inside and outside of home7
         Physical challenges of transporting oxygen6
         Given up hobbies6
         Concerns with oxygen limitation outside of home3
         Physical challenges of using oxygen at home3
        Information/education¶
         Disease progression and prognosis14“I am dissatisfied; the disease was not explained to me. I feel like people assumed I know, but in general it felt like you were left, like, in the corner” (non-IPF patient) [21]
        “I remember searching on the Internet, and thinking, ‘I'll probably be dead next week.’ In the beginning, because you know so very little, it can be very frightening. It was so confusing” (patient with IPF) [31]
        “They say you are like this and that's how you are going to end up like. And you think, what's going to happen in between?’ (patient with IPF) [34]
        “[W]hen I went to see him a month or two back, he said, ‘Are you using your oxygen?’ I said, ‘No’. I said, ‘It's too bloody hard to connect’…. He said, ‘It's the easiest thing you can do. Why haven't you tried it?’ I said, ‘No one has told me how easy it is”’ (patient with IPF who had ceased antifibrotic therapy) [16]
        “[I]t would be wonderful to have, once-a-month, a highlight on somebody who says “Yeah, I've been dealing with this for 11 years, this is what my life is like” instead of reading some statistic” (patient with IPF) [23]
        “It is difficult for us to help them, we would like to have more information about what we should do at home” (caregiver of patient with IPF using pirfenidone) [8]
         Supplemental oxygen, including travel with oxygen13
         Pharmacological treatments11
         Planning for end-of-life11
         Coping strategies9
         Managing symptoms (breathlessness and cough)8
         Non-pharmacological treatments/ alternative therapies7/1
         Research and clinical trials7
         Pathophysiology6
         How to provide practical/emotional care for loved one with pulmonary fibrosis4/2
         Lung transplantation5
         Understanding tests used for diagnosis and monitoring4
         Treatment centres/referral to suitable specialists3
         Travelling with pulmonary fibrosis2
         How to recognise and deal with important signs and symptoms3
         Signs and symptoms of pulmonary fibrosis2
         Causes of pulmonary fibrosis2
         Managing comorbidities1
         Success stories of living with pulmonary fibrosis1
         Homecare/drug delivery1
         Advocacy1
         How to avoid infection1
         How to communicate with a frustrated/ angry/depressed patient1
         How doctors follow IPF over time1
         How to access community supports1

        Shading indicate where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=18; ¶: n=26.

        • TABLE 4

          Summary of supportive care needs; health system/communication and access to care domains

          Needs domain and category Studies nIndividual reporting needRepresentative quotes
          PatientCaregiver
          Health system/patient–clinician communication#“I was angry and upset; it took over 2 years to get a diagnosis and I felt none of the doctors cared” (patient with IPF) [1]
          “I came in and saw the nurse and she knew more and understood more about my complaint than anyone I'd seen prior…. It gives you confidence” (patient with IPF) [28]
          “I think they try to liaise between each other but it so often falls apart … there is really a short coming amongst getting information from one aspect of the medical profession to the other” (caregiver of patient with advanced IPF) [25]
          “Their honesty in their conversation was huge as well. Being able to look my mom in the eye and tell her that she's dying and that she will be dead within the year. And then, taking the time to sit there and hold her hand and wait until she was ready to talk, and answer her questions, and let her know what that death was going to look like [pause] I think is also really big” (bereaved caregiver) [32]
           Benefits of specialist centres7
           More timely and accurate diagnosis7
           Honesty about what the future holds6
           Benefits of specialist pulmonary fibrosis nurses5
           Healthcare professionals to be better informed5
           Sensitivity in delivering diagnosis and prognosis –allowing enough time4
           Ongoing relationship with healthcare professionals3
           Coordination of care between healthcare professionals/shared care with local healthcare professionals2/1
           Encourage self-management2
           Timing of end-of-life conversations2
           Role for caregivers in consultation1
           Access to information at “touchpoints” between consultations1
           Understanding goals of therapy1
           Feedback from clinical trials1
           Adherence to palliative care guidance by healthcare professionals1
          Access to care¶“… somebody that I could ask questions of; somebody who has been down that path, that, um, you know, that they would, would be available to, and willing, to talk about how do you do this or how do you do that” (patient with IPF using oxygen for 9–12 months) [26]
          “The doctors helped me, but I have never received any psychological support, I really need it” (patient with IPF using pirfenidone) [8]
          “Being able to speak to someone over the phone about my problems has been very reassuring, rather than having to wait until my next clinic visit” (patient with IPF using pirfenidone) [7]

          “I can't get a lung transplant because I'm too old. I've just accepted it” (patient with IPF using antifibrotic therapy) [16]
          “They also said there were treatments that were not available in Spain yet. I even asked her [the doctor] if we could get it, and she told us it was impossible… Those 2 years we were missing [out on treatment]… We could do nothing about it, there were parameters [to qualify for treatment]” (patient with IPF) [31]
           Support groups/peer support12
           Emotional/psychological support8
           Specialist centres8
           Support/care for family6
           Pharmacological treatment6
           More effective treatments5
           Specialist nurse5
           Lung transplantation4
           Palliative care, including death at home4
           Pulmonary rehabilitation/maintenance pulmonary rehabilitation programmes in community (led by pulmonary fibrosis specialist)3/1
           Multidisciplinary teams4
           Pulmonology specialists4
           Home modification/adaptation3
           Supplemental oxygen3
           End-of-life counselling3
           Specialist visits2
           Diagnostic tests2
           Advocacy group1
           Clinical trial1

          Shading indicates where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=22; ¶: n=27.

          Supplementary Materials

          • Figures
          • Tables
          • Supplementary Material

            Please note: supplementary material is not edited by the Editorial Office, and is uploaded as it has been supplied by the author.

            ERR-0125-2019_Supplementary_tables ERR-0125-2019_Supplementary_tables

          PreviousNext
          Back to top
          View this article with LENS
          Vol 29 Issue 156 Table of Contents
          European Respiratory Review: 29 (156)
          • Table of Contents
          • Index by author
          Email

          Thank you for your interest in spreading the word on European Respiratory Society .

          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.
          The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review
          (Your Name) has sent you a message from European Respiratory Society
          (Your Name) thought you would like to see the European Respiratory Society web site.
          CAPTCHA
          This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
          Print
          Citation Tools
          The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review
          Joanna Y.T. Lee, Gabriella Tikellis, Tamera J. Corte, Nicole S. Goh, Gregory J. Keir, Lissa Spencer, Debra Sandford, Yet H. Khor, Ian Glaspole, John Price, Alison J. Hey-Cunningham, Jamie Maloney, Alan K.Y. Teoh, Alice L. Watson, Anne E. Holland
          European Respiratory Review Jun 2020, 29 (156) 190125; DOI: 10.1183/16000617.0125-2019

          Citation Manager Formats

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

          Share
          The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review
          Joanna Y.T. Lee, Gabriella Tikellis, Tamera J. Corte, Nicole S. Goh, Gregory J. Keir, Lissa Spencer, Debra Sandford, Yet H. Khor, Ian Glaspole, John Price, Alison J. Hey-Cunningham, Jamie Maloney, Alan K.Y. Teoh, Alice L. Watson, Anne E. Holland
          European Respiratory Review Jun 2020, 29 (156) 190125; DOI: 10.1183/16000617.0125-2019
          Reddit logo Technorati logo Twitter logo Connotea logo Facebook logo Mendeley logo
          Full Text (PDF)

          Jump To

          • Article
            • Abstract
            • Abstract
            • Introduction
            • Methods
            • Results
            • Discussion
            • Supplementary material
            • Footnotes
            • References
          • Figures & Data
          • Info & Metrics
          • PDF

          Subjects

          • Interstitial and orphan lung disease
          • Tweet Widget
          • Facebook Like
          • Google Plus One

          More in this TOC Section

          • Severe COVID-19 versus multisystem inflammatory syndrome
          • PROMs for paediatric acute lower respiratory infection studies
          • Forbearance with endobronchial stenting: cognisance before conviction
          Show more Reviews

          Related Articles

          Navigate

          • Home
          • Current issue
          • Archive

          About the ERR

          • Journal information
          • Editorial board
          • Press
          • Permissions and reprints
          • Advertising
          • Sponsorship

          The European Respiratory Society

          • Society home
          • myERS
          • Privacy policy
          • Accessibility

          ERS publications

          • European Respiratory Journal
          • ERJ Open Research
          • European Respiratory Review
          • Breathe
          • ERS books online
          • ERS Bookshop

          Help

          • Feedback

          For authors

          • Instructions for authors
          • Publication ethics and malpractice
          • Submit a manuscript

          For readers

          • Alerts
          • Subjects
          • RSS

          Subscriptions

          • Accessing the ERS publications

          Contact us

          European Respiratory Society
          442 Glossop Road
          Sheffield S10 2PX
          United Kingdom
          Tel: +44 114 2672860
          Email: journals@ersnet.org

          ISSN

          Print ISSN: 0905-9180
          Online ISSN: 1600-0617

          Copyright © 2023 by the European Respiratory Society