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Barriers to and facilitators of the use of oxygen therapy in people living with an interstitial lung disease: a systematic review of qualitative evidence

Gabriella Tikellis, Mariana Hoffman, Christie Mellerick, Angela T. Burge, Anne E. Holland
European Respiratory Review 2023 32: 230066; DOI: 10.1183/16000617.0066-2023
Gabriella Tikellis
1Respiratory Research@Alfred, Central Clinical School, Monash University, Melbourne, Australia
2NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia
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  • For correspondence: gabriella.tikellis@monash.edu
Mariana Hoffman
1Respiratory Research@Alfred, Central Clinical School, Monash University, Melbourne, Australia
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Christie Mellerick
1Respiratory Research@Alfred, Central Clinical School, Monash University, Melbourne, Australia
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Angela T. Burge
1Respiratory Research@Alfred, Central Clinical School, Monash University, Melbourne, Australia
3Department of Physiotherapy, Alfred Health, Melbourne, Australia
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Anne E. Holland
1Respiratory Research@Alfred, Central Clinical School, Monash University, Melbourne, Australia
2NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia
3Department of Physiotherapy, Alfred Health, Melbourne, Australia
4Institute for Breathing and Sleep, Melbourne, Australia
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Figures

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  • FIGURE 1
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    FIGURE 1

    Preferred Reporting Items for Systematic Reviews and Meta-analyses flow of qualitative studies through the systematic review. ILD: interstitial lung disease.

  • FIGURE 2
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    FIGURE 2

    Barriers to and facilitators of the use of oxygen therapy based on the Consolidated Framework for Implementation Research (CFIR). ILD: interstitial lung disease.

Tables

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  • TABLE 1

    Methodological quality assessment of the 13 included studies based on Critical Appraisal Skills Programme criteria

    First author [ref.] (year)PopulationAimsQualitative methods appropriateConnection to theoretical frameworkRecruitment strategyData collectionReflexivityEthical issuesData analysisClear statement of findingsValue of researchTotal score#
    Belkin [26] (2014)Caregivers111110.511119.5
    Burnett [22] (2019)People with IPF1110.51111119.5
    Duck [23] (2015)People with IPF and caregivers11110.50.511119
    Graney [18] (2017)People with PF11110.50.510.5118.5
    Graney [25] (2017)Caregivers1110.510.511119
    Khor [19] (2017)People with ILD1110.51111119.5
    Khor [30] (2017)Respiratory physicians1110.510.511119
    Lindell [21] (2019)Any lung disease111111111110
    Ramadurai [27] (2018)People with IPF and caregivers11110.5110.5119
    Sampson [28] (2015)People with IPF and caregivers11110.50.510.5118.5
    Schoenheit [20] (2011)People with IPF11110.5110.5119
    Visca (2018)
    [29]
    People with fibrotic ILD and caregivers11110.50.510.5118.5

    1: criterion completely met; 0.5: criterion partially met; 0: criterion not applicable, not met or not mentioned. IPF: idiopathic pulmonary fibrosis; PF: pulmonary fibrosis; ILD: interstitial lung disease. #: scores of 9–10 are defined as high quality, scores 7.5–9 as moderate quality and <7.5 as low quality.

    • TABLE 2

      Theoretical Domains Framework domains by study

      Embedded Image
    • TABLE 3

      Representative quotes for barriers to and facilitators of oxygen therapy mapped to the Theoretical Domains Framework

      TDF domainRepresentative quotes
      Beliefs about consequences“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 you're stuck inside the cage.”
      (Participant with IPF, oxygen therapy use unknown, UK) [23]
      “I thought once I get oxygen I'll be back to being who I was, but that didn't happen but it makes life easier.” (Participant with ILD on oxygen therapy) [24]
      “O2 does denote a progression…in my disease that I wouldn't be happy about and…feels like maybe it would be a setback”
      (Female participant with chronic hypersensitivity pneumonitis on oxygen therapy) [28]
      “Once I start doing that [using oxygen], I reckon that's the end of the line”
      (Participant with ILD not on oxygen therapy) [22]
      Environmental context and resources“I mean, you, you have to adapt to, to planning to take the charger and the machine and the cannula and, you know, the cleaning supplies that go with, you know, that, all that stuff”
      (Male participant with IPF on oxygen therapy) [28]
      “I've got the oxygen. I used to be on it when I first got it, I used to hire it. I was on it in hospital, two units I think it was and then came home and I hired one. I was on that 24 h a day and then I thought this is too expensive. The specialist said I'll be on it forever so I thought oh well I'll just buy one, so $4700 later.”
      (Participant with IPF on oxygen therapy) [25]
      “Everything was an expedition if we were going out”
      Before leaving, they had to “figure out what your [O2] needs are going to be while you're gone”
      (Caregiver of person with IPF on oxygen therapy) [25]
      Emotion/optimism“It's maintaining her and, uh, for that I'm grateful. And I saw a lot of confidence when I gave her the portable oxygen machine initially. She was super-excited about it; you could tell that she felt good. She felt confident.”
      (Caregiver of person with PF on oxygen therapy) [22]
      “Well, [I think about] the harm [of running out of oxygen]. Basically, going to collapse. And, need to get an ambulance, get some oxygen, that's going to take some time.”
      (Participant with ILD on oxygen therapy) [25]
      “We've been to Tesco's and I've run out (oxygen)…..I was really gagging for breath. That's when the panic attack starts setting in and you know they're terrible. I mean I have to carry Valium all the time now.”
      (Participant with ILD on oxygen therapy) [23]
      Social or professional role and identity“Just the stigma of it. I don't know…I know a lot of people assume that they put themselves in that position, by smoking or COPD and I don't want people to think that of me, because that's not why I have it.” (Female participant with IPF not yet on oxygen therapy) [28]
      “…you ride a fine line between how firm do you get, you know, and how soft do you stay, to get accomplished what you feel is important.” PLOs would sometimes heed their IC's advice and other times “totally ignore it” (Caregiver of person with PF on oxygen therapy) [28]
      “I just felt embarrassed for having these tubes running up my nose and from a tank on my back. If it was a pill, nobody notices it, but with a cylinder on your back and a plastic tube up your nose it is much more visible.” (Male participant with fibrotic ILD on oxygen therapy, 69 years old) [29]
      Beliefs about capabilities“Well, it certainly has expanded my ability to do the things I want to do. [I am] more comfortable pushing what might be the limits of my breathing ability and knowing that there is some relief available other than just trying to huff your way through it.” (Male participant with IPF, 67 years old, on oxygen therapy for 9–12 months) [28] “Freedom. Being able to do things I haven't been able to do for such a long time. It made me feel less tired. It made me feel less breathless. My cough wasn't so bad. I could do things without having to stop. It taught me how much this disease has stopped me from doing things. It's not because I don't want to do them—I'd love to do them—it's the fact that I physically, because of the breathlessness, can't do it” (Female participant with fibrotic ILD, 52 years old) [29]

      TDF: Theoretical Domains Framework; IPF: idiopathic pulmonary fibrosis; PF: pulmonary fibrosis; ILD: interstitial lung disease; COPD: chronic obstructive pulmonary disease; PLO: patient loved one; IC: informal caregiver.

      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.

        Supplementary file 1: TDF Domains and constructs ERR-0066-2023.SUPPLEMENT

        Supplementary file 2: CFIR constructs and domains ERR-0066-2023.SUPPLEMENT2

        Supplementary file 3: Search strategy ERR-0066-2023.SUPPLEMENT3

        Supplementary file 4: Characteristics of included studies ERR-0066-2023.SUPPLEMENT4

        Supplementary file 5: Qualitative evidence mapped to the CFIR constructs and domains ERR-0066-2023.SUPPLEMENT5

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      Barriers to and facilitators of the use of oxygen therapy in people living with an interstitial lung disease: a systematic review of qualitative evidence
      Gabriella Tikellis, Mariana Hoffman, Christie Mellerick, Angela T. Burge, Anne E. Holland
      European Respiratory Review Sep 2023, 32 (169) 230066; DOI: 10.1183/16000617.0066-2023

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      Barriers to and facilitators of the use of oxygen therapy in people living with an interstitial lung disease: a systematic review of qualitative evidence
      Gabriella Tikellis, Mariana Hoffman, Christie Mellerick, Angela T. Burge, Anne E. Holland
      European Respiratory Review Sep 2023, 32 (169) 230066; DOI: 10.1183/16000617.0066-2023
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