Perceived barriers and facilitators to managing psychological distress in COPD: The perspectives of patients and carers – a qualitative study using the theoretical domains framework (TDF)

Abstract

Psychological distress is highly prevalent in people with chronic obstructive pulmonary disease (COPD), however, remains under-recognised and under-treated. A qualitative study using semi-structured interviews was undertaken to explore lived experiences of psychological distress of people with COPD and their informal carers, as well as barriers and facilitators to uptake of mental health treatments. Participants were recruited via purposive sampling from respiratory clinics at two Australian tertiary hospitals. Thirteen people with COPD and comorbid mental illnesses and two informal carers participated. Interview transcripts were analysed using the Theoretical Domains Framework (TDF). Barriers to patients’ acceptance of structured management for psychological distress in COPD included: limited understanding of overlapping symptoms, high burden of care from physical issues, stigma, and healthcare that did not align with individual preferences. Increased psychoeducation, supported self-management, and individualised care were possible facilitators. Multidisciplinary care integrating mental health services within primary care and pulmonary rehabilitation settings are required to overcome current challenges and improve patient outcomes.

Introduction

Psychological distress is highly prevalent in people with chronic obstructive pulmonary disease (COPD) and associated with worse disease outcomes. Depression and anxiety are the most frequently observed mental health conditions^1–4, and contribute to a significant burden of COPD-related morbidity related to reduced quality of life, poor treatment adherence, impaired physical functioning, and increased healthcare utilisation^3,5–7.

Addressing COPD and its comorbidities has important individual, social, and economic implications. The global prevalence of COPD in people aged 30–79 years was 391.9 million people in 2019 using the Global Initiative for Chronic Obstructive Lung Disease (GOLD) criteria^8,9. In the United States (US), COPD represents the third-leading cause of 30-day readmissions, with healthcare costs up to USD 50 billion annually^10,11. The reported prevalence rates of depression and anxiety in COPD vary substantially based on populations studied and assessment tools used^3,10,11. For patients with stable COPD in primary care settings or respiratory clinics, the prevalence of depression varies from 10% to 57%, while prevalence of anxiety ranges from 7% to 50%^11,12. Following a diagnosis of COPD, patients’ risk of depression is greater with worsening breathlessness^5,13. Panic attacks are also ten times more common in people with COPD compared to the general population^14,15, and anxiety is frequently comorbid with depression in this patient group⁷.

The pathophysiological associations between COPD and psychological distress are likely to be bidirectional, complex, and possibly explained by common risk factors (e.g., cigarette smoking, social isolation), response to symptomatology, and biochemical alterations^3,12,16. According to one cognitive behavioural model of breathlessness, repetitive catastrophic cognitions in the setting of breathlessness can cause a heightened state of psychological and physiological arousal^17,18. Anxious cognitions combined with fear and misinterpretation of increased dyspnoea leads to worsening breathlessness, hyper-ventilatory panic attacks, and a positive feedback loop is generated^17–21. There is clear evidence that severity of breathlessness is associated with an increased burden of psychological issues, and vice versa^3,22. In addition, Spathis et al’s Breathing, Thinking, Functioning Model (BTF)²¹ suggests there is neural complexity to the sensation and perception of breathlessness in COPD, which is not entirely predicted by the severity of lung pathology, and may be associated with psychological factors.

Within the literature, illness labels such as “psychological comorbidities”, “anxiety”, “depression”, “mental illness” are used interchangeably. Volpato et al³ have proposed the use of “psychological distress” as an umbrella term to encompass the different levels of psychological suffering in COPD, recognising that many patients may not fulfil all diagnostic criteria for a mental health disorder, but still experience elevated levels of depression and anxiety as well as other adverse emotional reactions to their illness. We have chosen to adopt this terminology in this article.

While the GOLD guidelines recommend actively screening for and managing psychological distress in people with COPD, it remains under-recognised and under-treated^3,4. Reportedly less than one-third of people with COPD receive adequate treatment for psychological issues^4,7,23. Prior research has mainly focused on health professionals’ views and experiences regarding patients’ uptake of mental health care; however there is limited empirical data on what influences patients’ own experiences of psychological distress and acceptance of recommended treatments in COPD^23,24. Despite the availability of several management options, it remains unclear why uptake of mental health care continues to be sub-optimal. Therefore, the primary aims of this study were to: explore patients’ experiences of psychological distress in COPD and understand the barriers and facilitators to acceptance of mental health care by people with COPD. The study also aimed to make data-driven recommendations regarding the provision of care to people with COPD that would best address identified needs and barriers²⁵. To achieve these aims, three research questions were explored with participants:

1. What are the drivers or contributors to psychological distress in people with COPD?

2. How does a person with COPD manage psychological distress, and what self-management approaches are used?

3. What structured healthcare approaches to managing psychological distress in COPD have been offered, and what external supports or interventions have patients and carers found helpful/not helpful in addressing these issues?

The causes of psychological distress in people with COPD are multifactorial and likely to include behavioural, social, environmental and biological factors⁵. A qualitative framework based on psychological and organisational theories of behaviour and behaviour change, known as the Theoretical Domains Framework (TDF), was therefore chosen to inform data analysis. The TDF was developed using an expert consensus and validation process; its most recent validated version includes 14 domains and their component constructs^26–28 (see Supplementary Appendix). The TDF has proven to be an effective tool for understanding the influences of individual cognitions, social context, and organisational characteristics on behaviours and behaviour change in healthcare settings²⁵. The framework is increasingly being used in qualitative research to better understand the views of service users with respect to treatment acceptance and uptake^25,28.

Methods

Design, setting and recruitment

This study used an exploratory qualitative design, with content analysis based on the TDF, to understand patients’ and carers’ knowledge and beliefs regarding psychological distress in COPD, and their perspectives regarding the barriers and facilitators to uptake of mental health treatments. An interview topic guide, not specific to the TDF, was designed to more broadly capture participants’ experience of their physical symptoms, mental health, and how provision of care could shape uptake of recommended treatments, without confinement to specific theoretical domains. The Consolidated Criteria for Reporting Qualitative Research (COREQ), a validated checklist for appraisal of qualitative studies, was used for reporting of this study²⁹.

Participants were recruited via purposive sampling from the outpatient respiratory departments of two tertiary hospitals in the Australian state of Victoria. Patients and carers (who accompanied the patient to the clinic) were screened for eligibility by their usual respiratory physician before, during, or after an outpatient clinic appointment, or when the potential participant attended for an investigation or exercise class, or accompanied a patient to these activities. Patients were invited to participate by their respiratory specialist if they met the following inclusion criteria: English-speaking, had documented diagnoses of COPD and one or more mental health conditions in their electronic medical record (e.g., major depression, generalised anxiety disorder), were medically-stable outpatients at the time of recruitment, and had moderate-to-severe breathlessness (with modified Medical Research Council breathlessness scores or ≥ 2). Participants with moderate-to-severe breathlessness were chosen given the well-documented associations between breathlessness severity and increased burden of psychological distress^4,21,22. Additionally, any accompanying carers who were both English-speaking and the carer of an eligible current patient of the outpatient clinic were asked to contribute their views and experiences of caring for someone with COPD and comorbid psychological distress.

Individuals who had expressed interest in participating were contacted and provided participant information statements by the project interviewers (J.W. or M.D.). Signed consent forms were obtained prior to the interviews. Participants were reassured that the interview would not affect their clinical care, test their knowledge of services, or collect information about complaints. Ethical and governance approval for this study was obtained from the Royal Melbourne Hospital Human Research Ethics Committee (Ref: HREC/57480/MH-2019).

Data collection

A single, in-depth, semi-structured interview was conducted with each participant, with demographic characteristics recorded at the commencement of the interview. The mean length of interviews was 60 minutes, with one interview of a shorter duration (26 minutes) due to limitations caused by the participants’ breathlessness and fatigue. Face-to-face and telephone interviews were conducted over a two-year period (September 2021 to December 2023) by two trained interviewers (J.W. and M.D.). As the COVID-19 pandemic necessitated social distancing restrictions, most patients chose to undertake telephone interviews. The interviewers followed an interview topic guide which aimed to explore the patient’s experience of their underlying medical condition, perceived emotional or mental health difficulties, and professional care received. A separate topic guide explored the carer’s role and responsibilities, awareness of the psychological impacts of the patients’ long-term condition, and views regarding professional supports and treatment.

Interviews were audio-recorded, de-identified and transcribed verbatim. Participants were designated pseudonyms, and field notes were recorded by the interviewer with these containing reflections of the participants’ communication and engagement during the interview which contributed to further depth of analysis³⁰. None of the participants requested their transcripts for comment or correction. No repeat interviews were conducted. NVivo14 for Macintosh was used for data management and subsequent analysis.

Analysis

Demographic data are reported using counts and frequencies (Table 1). Interview data was initially coded deductively with direct links to the TDF as a coding framework (and over-arching themes TDF-based), followed by secondary inductive analysis for subcategories/themes within each TDF domain^25,26,31,32. A dual approach of inductive and deductive methods is recognised to be valuable with patient/public populations, ensuring more nuanced and contextual influences on behaviour and moderators of behaviour are not overlooked³². Analysis occurred concurrently with data collection, until no new themes emerged within TDF domains. Saturation was reached following 15 interviews. To facilitate coding and analysis of interview transcripts, two coders (J.W. and L.L.) independently coded responses from five initial interviews into the 14 theoretical domains in the TDF according to their component constructs^27,28. Results were then compared to develop a shared coding scheme³³, which was used to map the developing analysis as well as guide coding of the remaining transcripts³⁴. Development of a coding scheme within qualitative analysis helps to facilitate a degree of intercoder reliability and reduces subjective bias³³. To ensure consistency and transparency throughout the analytic process, regular meetings with all investigators were held to review the chosen domains which captured participants’ illness experiences and the opportunities-constraints affecting uptake of mental health care. Discrepancies in categorisation and selection of theoretical domains and constructs were resolved through discussions until consensus was reached. Out of the 14 possible domains, the strongest domains and themes within the data were identified as those referenced by many participants, discussed at length, and with meaningful connections to other themes or recurring patterns across the dataset^31,35. Future practice-relevant recommendations for addressing the mental health needs of people with COPD were informed by dominant themes and domains identified during data analysis.

Table 1.

Patient participants’ characteristics (n = 13).

Characteristic	Count and frequency
Gender
Women	8 (62%)
Men	5 (38%)
Agea	73 (7.5)
Smoking status
Current	1 (7.7%)
Previous	11 (84.6%)
Never	1 (7.7%)
Pulmonary functiona
FEV1 (% predicted)	44.0 (18.5)
FVC (L)	2.23 (0.69)
FVC (% predicted)	76.1 (16.3)
FER (%)	44.3 (14.9)
DLCO (absolute)	9.60 (3.05)
DLCO (% predicted)	43.3 (9.4)
Outcome measuresa
mMRC score (n = 11)b	3.4 (0.6)
CAT score (n = 11)b	24.0 (6.9)
PHQ-9 (n = 10)c	16.0 (7.7)
Number of respiratory medications per patienta	3.5 (0.9)
Number of psychotropic medications per patienta	1.5 (0.8)
Number of respiratory clinic visits in 12 months per patienta	5.5 (2.6)

COPD chronic obstructive pulmonary disease; FEV1 forced expiratory volume in 1s; FVC forced vital capacity; FER forced expiratory ratio; mMRC modified Medical Research Council scale; CAT COPD assessment test; PHQ-9 patient health questionnaire-9; DLCO diffusing capacity for carbon monoxide.

^aMean (standard deviation);

^bdata not available for 3 patients who were unable to complete the scores at the time of interview;

^cdata not available for 2 patients who were unable to complete the scores at the time of interview;

All interviewers and coders involved in the study were experienced in conducting qualitative research. At the time of the study, J.W. was a junior medical officer undertaking psychiatry training. M.D. was a social work student involved in initial participant interviews. Both J.W. and M.D. had received training and supervision in qualitative methods by an experienced qualitative researcher (K.W.). Neither interviewer had working relationships with any of the participants. L.L. is a PhD candidate with research insights into non-pharmacological management approaches for people with severe lung disease. E.B. is a senior clinical psychologist with expertise in multidisciplinary mental health services at several major public hospitals. N.S. is a consultant respiratory physician and academic with expertise in COPD and extensive knowledge of respiratory practices across Australia and internationally. Together, all authors contributed diverse insights into the care of people with COPD and comorbid psychological distress. Involving a team of researchers with differing backgrounds is arguably advantageous, as it minimises the risk of subjective bias and increases the breadth and depth of qualitative analysis³⁶.

Results

Seventeen individuals were approached, with two declining to participate in the study. Of the 15 participants, there were 13 patients with COPD and two carers. Most patient participants were women (62%), with mean age 73, and severe functional limitation due to breathlessness, based on modified Medical Research Council (mMRC) scores (mean mMRC = 3.4, S.D = 0.6) and the COPD Assessment Test (CAT) (mean CAT = 24, SD = 6.9) (Table 1). mMRC measures the degree of disability that breathlessness poses on day-to-day activities using a self-rated scale from 0 to 4; with increasing scores reflective of higher symptom burden³⁷. CAT contains eight items used to measure the impact of COPD on health status, with scores above 21 indicating high impact of disease³⁸. Patient Health Questionnaire (PHQ-9) is a widely-used brief instrument to assess the severity of depressive symptoms across scales of “0” (not at all) to “3” (nearly every day)³⁹, with a scoring range of 0 to 27.

Theoretical domains framework

The domains represented most strongly in the data in relation to the three research questions were: Knowledge, Skills, Social influences, Social/professional role and identity, Beliefs about capabilities, Beliefs about consequences, Environmental context and resources, Behavioural regulation, Emotions, Optimism, and Memory, attention and decision processes. Figure 1 depicts these 11 domains mapped across the three research questions. Illustrative quotes for the domains and themes are listed in Tables 2, 3, and 4.

Fig. 1.

TDF domains mapped to the three research questions.

Table 2.

Research Question 1: Drivers or contributors to psychological distress mapped to theoretical domains.

Domains and themes	Quotes
Knowledge Participants’ knowledge about their lung condition, mental health, experiences of illness and treatment, and the psychological impacts of living with both (or more) conditions
Respiratory condition and treatments	“She [respiratory physician] explains a lot to me but I still don’t understand. I know that I’ve got really bad lungs….And how long I will live with my lungs I don’t know.” (Cynthia, P13)
Mental health issues and treatments	“Well, I’ve been diagnosed with depression….Uh, I’m on, uh, Zoloft for depression….Yeah, I’m on 200 mil of that per day.” (Sam, P7) “I don’t know what anxiety is [laughs]. If something went wrong, I mean, in my day, have another beer. That’s what you did, you had another beer [laughs]. Anxiety? I don’t understand what it is.” (Derrick, P4)
Link between mental health and COPD	“It can get very frightening. Really frightening. I know when we were in Queensland for a holiday, I was sent to hospital, quite sick with the breathing. And I couldn’t breathe. And I was so frightened that I wasn’t breathing at all, because of it. And yeah, it caused a bit of a trip to hospital.” (Allen, P1) “I’m getting short of breath. Just standing here. Maybe that’s got something to do with the pain as well, but… This is where I get depressed and think I just want to give it up. I just want to stop fighting.” (Irene, P8)
Comorbidities	““So partial asbestosis, partial emphysema and then because of the cardiomyopathy… er having the heart muscle damaged… which was unfortunate because by the time I got into hospital with the heart attack… was over an hour… um. I was not supposed to be alive, but I am.” (Neil, P11)
Misattribution	“Well before that, if I lost my breath, I had to sit down and get the fan to blow on me to be able to breathe. And now I’m taking the mirtazapine, I hardly do that anymore. I don’t have that problem. So that’s a big plus for me….I better tell them to put it up a bit more. ‘Cos it’s the only tablet that helps me breathe.” (Derrick, P4)
Social/Professional Role & Identity Participants’ personal qualities, self-identity, or role transitions that may have been associated with the development of psychological distress
Self-identity type	“I start to cry sometime, you know. I can’t live like that. Because, to live like that, do nothing in the house, for a woman, that’s… I feel like my life is finished.” (Antonella, P6) “I have moments… My, not my own personal thing, but about other people where I get stressed and I worry for them,… And I worry and I know there’s nothing I can do, I just think I love worrying.” (Pauline, P9) “At that time, I… I didn’t understand this depression. I was a very bright girl. I liked to sing, I liked to dance, I liked to read, and I like all of this. Coming to Australia, it’s like cut my leg.” (Antonella, P6).
Social influences Social interactions that contributed to uptake of substance use, recognised as both a driver and moderator of psychological distress in COPD
Uptake, substance use	“I saw everybody else smoking and I thought, well, you know, this must be a cool thing to do.” (Irene, P8) “Oh just the kids I was mucking around with - some of them were a lot older and you know they sort of say oh just have a drag, have a drag, go on have a drag. I’ll give you $10 If you have the drag. Yeah.” (Fiona, P10) “It’d be one of the guys. Um, “have a smoke, that’ll make you feel better”. And, do you know, I took it up, because that was, that was the thing that, you know, obviously associated the pair of them - stress and smoking.” (Kathy, P3)
Environmental context and influences Circumstances in a person’s life or environment which may have led to or triggered the onset of psychological distress
Triggers, mental health	“To be honest with you, I’m gonna get a little bit personal here. Those other drugs were like how I dealt with traumas. Um, I was, um, sexually abused by just about every member, male member of my family. Physically abused by my stepfather and my mother.” (Irene, P8) “When I was in my 40 s and I think it was part of.…Was after I went to a lot of trouble trying to conceive. And after I stopped doing that, when my eggs failed…I was pretty down there and they put me on some antidepressants, I was on that for a couple of years, but that’s a long time ago. Like…30 years ago.” (Pauline, P9) ““I think because I just wasn’t coping with three kids under two and a half. Um and as I said, my husband was never home. And he used to go out drinking after work and you know, get home at 10, 11 o’clock at night.” (Fiona, P10)
Psychosocial circumstances	“Each one of us has a cross to bear in the house. My health, [husband’s] health, and my son’s health. We’ve all got a cross to bear, and we’ve got to tolerate each other, but when things aren’t going too good for one person - just verbal - but yelling and that, I just can’t cope with that anymore. It gets me down; very down.” (Barbara, P2)
Emotions Participants’ reactions, feelings, or emotional state experienced as a result of living with their physical condition, mental health condition, or the interaction between both
Reactions to illness and illness treatments	“When I try to do something, it gets very frustrating. If I try to do anything and I can’t climb a ladder and I can’t do this and it… [sighs], you know, you just feel useless.” (Sam, P7) “I used to be a bit embarrassed by it. And always I felt a bit embarrassed and a bit ashamed because people would always say to you, oh, did you smoke? [Laughs]. And I used to say, yes I did, and you feel really bad saying that, you know. They must think you’re stupid…That you’d smoked yourself to this point.” (Pauline, P9) “He’s had days where he’s throwing the tubes off just saying, “I can’t take this! I can’t do this” where he’s getting like this now where that was never a thing.” (Rosemary, C1) “Terrible! How would you like it if you couldn’t breathe? I mean it’s frightening – you’re trying to get your breath in and you can’t get it! It’s very hard. And when, of course, it’s not just you can’t breathe - you’re panicking as well. Because you’re wondering what’s happening.” (Barbara, P2)
Optimism Participants’ optimism or pessimism regarding the state of their lung condition, mental health, and future wellbeing
Pessimism – illness and illness treatments	“Well I don’t think there is anything. Because there’s no…. I’ve been told that there’s nothing – it can’t get better. It’s only gonna get worse. So there’s no hope there.” (Fiona, P10) “Because in my life I’ve been through too much. It never works the right way. Uh, I think that’s negative. You know, I feel negative.” (Antonella, P6)
Optimism – illness and illness treatments	“I accept because,…You gotta start to live with this symptom. It means they can’t do nothing for me. And then, I think to try to live this whatever time I got left, in a way, I still enjoy myself.” (Antonella, P6) “I think to myself, well…I’m still alive. I wake up, you know if I wake up the next day, I say thank you I’m still around.” (Cynthia, P13)

All data are anonymised with pseudonyms given to indicate participant sex.

P patient. C carer.

Table 3.

Research Question 2: Self-management approaches for psychological distress.

Domains and themes	Quotes
Skills Patients’ respiratory and psychological self-management capabilities, and their technological skills when accessing digital healthcare
Respiratory self-management	“Oh I try and sit down and do deep breathing to 10, and then I’ll see how I am. And then I’ll start again with another 10 deep breaths until I’m quieter. And I just sit there and try and relax.” (Barbara, P2) “And if I walk up to the street up the shops, which is about a 20 min walk might be a little more. I have to stop all the time to take my puffer and if I can’t catch my breath I have to sit down.” (Cynthia, P13)
Psychological self-management	“Well, I’ll go into my head. Where I’m either in a valley, where it’s just trees and stuff or it’s winter and it’s snowing everywhere… the others are, I can be in a desert somewhere just walking.” (Phyllis, P12) “From now on when I got this, stress and everything, I go out. And I go and see my daughter, my granddaughter, or I go and play bingo.… It’s keeping your mind far, you know, from the everyday routine. So, you look forward to doing something else.” (Antonella, P6)
Technological competence/accessing digital healthcare	“He can send it [prescription] through to you.’ And I said, ‘what, send me an email?’ And she said, ‘no, on your phone, send a message on your phone. And then you’ll have a prescription number.’ I said, ‘okay, so what do I do with that?’ She said, well, ‘you give it to the chemist shop when you go in.’ I said, ‘for God’s sake, the chemist shop delivers my prescriptions and they’ve been doing it for a couple of years!’” (Kathy, P3) “Then I’ve got an iPhone. So if I make an appointment on my phone, the next minute it’s on my iPad and on my computer as well.” (Neil, P11)
Beliefs about capabilities Participants’ confidence managing their respiratory condition, mental health and comorbidities
Confidence managing respiratory condition	“It’s more easy to have a broken, broken arms or broken leg, it’s easier to handle. But with the lungs, I can’t handle.” (Mario, P5) “I mean, look, he does everything for me. So he’s very-, well, when it suits him, he does. You know, so I mean, I don’t know that I could cope without him.” (Fiona, P10)
Confidence managing mental health	“I don’t know. I’ve never asked for it [mental health care]. So I don’t even know what’s out there. And, um, am I that interested in it? No, because I don’t feel it is that big of a deal. I can handle it.” (Phyllis, P12) “That’d be what I’d say about the way [patient’s name] operates. If she’s really stuck, she would ask for help and assistance, that’s for sure. But she doesn’t feel like she’s at that level yet.” (Brett, C2) “‘I’ve got through all of those earlier things in my life, nothing’s coming, nothing that, you know. That’s not coming back to bite me or anything. I dealt with them all, I was strong. I dealt with everything I had to deal with.” (Kathy, P3)
Confidence managing comorbidities	“Terrible! I’m not happy. I mean, the pacemaker starts playing up. So I’ve got to try and relax myself and get that settled before I can do anything. I lose my balance. I’ve got to be careful how I walk… I’ve got osteoporosis and I can’t walk too good on my own.” (Barbara, P2)
Behavioural regulation Strategies aimed at self-regulating, managing or coping with aspects of their respiratory condition or psychological distress
Daily life activities	“Shopping-wise- I got to pace myself for shopping….and fortunately, the shopping carts are at the right height, so if I start having problems breathing, I can hang onto that and… just slowly get my breath back….If I feel like I need to…you know get away, then whatever I’ve got, I’ll pay for that. And then another day when I feel a bit better, I’ll go back and finish it off.” (Neil, P11)
Lifestyle choices	“Like all alkies (alcoholics), there’s a reason you drink. And the drink’s to put things…that you’re not happy with, behind you. Just to, to hide it away.” (Allen, P1) “Oh, absolutely! I started smoking because of stress, I was not even 17. I was 16 years old. And my, one of my friends I’d grown up with all my life. She was killed in a car accident and you know, I was struggling to deal with it. My sister and me and our friends, and somebody said, have a smoke.” (Kathy, P3) “I used to smoke. Anyhow, I stop smoke since I have attacks, that I dare not touch cigarette.” (Antonella, P6)
Social/Professional Role & Identity The influence of identity and personal qualities on self-management, acceptance of care, or carers’ acceptance of their roles
Self-identity type	“I cope with everything. Sooner or later I get out of it.” (Derrick, P4) “No, I tried quite a few therapy sessions and for me they didn’t work. I’ve come to the conclusion, I’m not a person that finds it easy to talk to other people in a group… or with people there. I don’t like an audience.” (Phyllis, P12) “I’m not a pill person. So that’s good being like that, isn’t it? Well, I think it is.” (Kathy, P3) “All the doctors I’ve had, my own GPs, have all been people that are interested in asthma and lung problems, so I’ve sort of sought those… I seek those sort of people out.” (Pauline, P9)
Care acceptance	“He’s a strong man, so you know, he didn’t want to go to the doctor, or to hospitals.” (Rosemary, C1) “I did have a psychiatrist tell me one day that a lot of my pain from my stomach…And if I talked about my childhood traumas that would take my pain away. I’m sorry, are you kidding, lady? Seriously? Those childhood traumas are… Back in those… I, I don’t usually talk about them.” (Irene, P8)
Role acceptance, carer	“…do what I’ve got to do. Because I know, if the role was reversed with [patient] and I, she would be doing the same thing for me. She’d be looking after me really well. And that’s what I do for her.” (Brett, C2)
Social influences The influence of social interactions, particularly carers’ input/impact on patients’ illness perceptions and help-seeking behaviours
Perceptions of illness and illness treatment	“He’s like “I don’t know what’s going on with me! I don’t know!” and I just tell him that it’s [anxiety] a part of the disease. It’s normal. It’s a part of what you have. You know?”(Rosemary, C1) “I really think, she’d think it’s [mental health care] an insult to her capacity to live her own life, you know? Because she does okay. But just sometimes it all just boils up inside and it spills over and I catch what’s coming out of the mouth, but I can deal with it. And it’s not hard, you know?” (Brett, C2)
Input, carer	“Other things like, sort of, breathing techniques. Because then when he starts to, have a breathing change, he forgets to breathe through the nose with the oxygen, he’s like (imitates hyperventilating) you know? And he’s like “I can’t get breath” and I say well you’re not,… through the nose, out through the mouth, we’ve done that before… all the different exercises with the physio.” (Rosemary, C1) “My daughter told me, mum, I know you. I saw you from before and now you improved a lot. That’s what my daughter say. You improved a lot. It’s not the same. And she tried to teach me how to breathe in when I’m agitated. To breathe in and breathe out….She say, are you feeling better like this or without, ooh, ooh? [Laughs]….See, that’s what you gonna do. Breathe in slowly and breathe out slowly.” (Antonella, P6)
Environmental context and resources Practical supports within the home environment provided by carers as a means of helping patients live adaptively with their conditions
Carers	“I do pretty much the bulk of the housework, all the washing and ironing. I try and keep the house as clean as I can, but I’m not an expert. She wants to go anywhere, I’ll drive her there now. And if she wants anything down the shop, I’ll just go and get it. I’m just like a run-around type of guy and to keep everything, do everything that she wants done, done. (Brett, C2) “I give him all the medications. And just watch for signs of the breathing, before it starts to get any worse and I’ll give him, you know, if he’s starting to work it up, then I’ll get on to it, before it gets any worse.” (Rosemary, C1) “….With my daughter. She does the best she can. And she said, mum, you know what, we go to do,….drop in at the centre. I wanna find out if they got this electrical scooter for you to walk all, you know, on that. Otherwise, if you get tired you've gotta sit and that’s no good.” (Antonella, P6)

Table 4.

Research Question 3: Structured healthcare approaches to managing psychological distress.

Domains and themes	Quotes
Beliefs about consequences Participants’ perceptions and expectations about their health conditions and the treatments offered
Expectations, mental health care	“Look they [psychologists] were very good, I mean, you can talk to them, and they listen to you and everything. But it doesn’t change the situation that you’ve got”. (Fiona, P10) “Rubbish [laughs]. Yeah, I don’t know, I was expecting something that she didn’t deliver. She got onto a subject which had nothing to do with it, and just harped on that. You know, I went three times, and yeah, she’s just harped on this one subject. And you know, that wasn’t the problem….I thought, she’s uh, I think she’s turning me against them [psychologists].” (Sam, P7)
Stigma	“Cos they’d be looking at you a nutter if you were going to be seeing a psychiatrist. Yeah, no. No, psychologists do their job, you know, perhaps sometimes if people, when they’re struggling and especially young people, if they’re struggling over something, if they go to psychologists first, I think it would be better for them.” (Kathy, P3)
Sharing illness experience	“Because I just don’t like talking about it. Why talk about it? It is what it is. It happened and it’s all there is about it. There’s nothing I can do about it now.” (Irene, P8).
Expectations, medication effects	“I don’t like taking tablets to be quite honest, because once you take them - and you’ve got to wean yourself off, I have a lot of bad trouble. So I don’t want to be poppin’ this in and that in.” (Barbara, P2) “I don’t know that, that anything can help. Because it’s, I’ve got COPD and heart failure and I just got to live with it. You know, taking medications is not going to- medication for anxiety or depression is not going to fix the COPD or the heart failure. Do you get what I mean?” (Fiona, P10)
Social influences The impact of social factors on participants’ attitudes and perceptions of structured management approaches for psychological distress, offered by health professionals
Perceptions of illness and illness treatments	“She thought he was sillier than me. Well, some psychiatrists, they do say that, don’t they? That they get a bit, you know, that the ones that have terrible cases to deal with, and they deal with them all the time, that they get a bit…odd. I’m trying to be polite here. You know, that’s what my sister said. He was as silly as what I was, and she said, and he calls himself a professor! [Laughs].” (Kathy, P3) “He prescribed morphine too. I said I don’t want to take morphine. And it looks like I’m at the end of the, you know… I get a bit scared, you know. Just to take morphine. Valium it’s all right. A lot of people take Valium.” (Antonella, P6) ““You don’t go crying like a little sissy to a doctor about things. [Laughs] My grandfather would roll over in his grave if I did that.” (Derrick, P4)
Environmental context and resources The impact of external factors such as availability and accessibility of healthcare services and healthcare professionals on access to treatments
Treatments offered, respiratory	“He [General Practitioner] must’ve clicked onto it then. And that’s when he put me on the [inhalers]….that I’m on. And then he also, he’s also put me onto um,…my other one, it’s for asthma.” (Kathy, P3) “You do sit-to-stand and you do lots of like little weights for your upper body….It was actually through HARP [hospital admission reduction program] that I did them. But then after I stopped doing that with them, I actually joined a gym and I used to use the treadmill and do a few exercises.” (Pauline P9)
Treatments offered, mental health	“Just talking to the doctor. And, like, I’ve been seeing the same doctor for 26 years. And he said, look, you don’t seem to be 100%. You know, you seem to be down, and so he prescribed me on those tablets.” (Sam, P7) “That’s the medication they gave me after I jacked up. After I went crook at ‘em. And they finally gave me mirtazapine, 15 milligram….And then I told them to take, to put it to 30….Which they finally did and now I’m still feeling better on that.” (Derrick, P4) “I mean, a few times, the local doctor has said, what about an antidepressant? And I’ve said no. Because as I said, years and years ago, I found they didn’t do anything. And I don’t like taking tablets unless I really have to.” (Fiona, P10) “In the hospital….when I had the psychologist with us, he was just a psychologist to teach people how to deal with pain without taking pills. That was his job, was to teach people to deal with pain without taking medication.” (Cathy, P3)
Input, health professionals	“If her GP thought she needed it, she’d be the first one to put her hand up and get someone to help her.” (Brett, C2) “I used to get that [counselling] at my AA meetings. We’d get up and talk about things or anything worrying you or upsetting you. And then you’d get a person who’d help you out and that; which they did. You’d have a sponsor. I didn’t have one, cos I asked everybody. But yeah, I did that through AA.” (Allen, P1) “The [General Practitioner] usually… he’ll ask, you know, a question or so… how’s your this going? How’s that going? Oh you don’t look too happy today… so he picks up on it. So yeah, he’s been reasonably good about it.” (Neil, P11) “What I need, or what I think I need, is somebody… that’s actually walked in my shoes, but that’s not quite right either because everybody’s got a different version even if you all read the same book! You’ve got 50 different versions, so… that’s why I find I can listen to what people are saying and not necessarily do I agree and know that it will work for me, I’ve just got to pick out what I think will work for me. And if it does, it does. And if it doesn’t, well at least I tried.” (Phyllis, P12)
Facilitators	“Like my local doctor. If I’m not well, or anything, she will see me at any time, she’s put a note on my file that if I ring up that she will fit me in. Whereas otherwise you have to wait three or four weeks to see her. And my cardiologist, if you ring him, he always rings you back within half an hour. It’s amazing.” (Fiona, P10) “I said I’m not even sure what puffers I’m supposed to take anymore. So she’s written down what I’m supposed to take. She did a new action plan.” (Irene, P8) “Like I don’t have to go and wait in the doctor’s surgery if I’m unwell. She just calls in here. She’s good. She does house calls….And a lot of doctors don’t do house calls.” (Pauline, P9)
Barriers, service accessibility	“I don’t think doctors are communicating with each other, because my doctor was trying to listen to my lungs. And he was saying something,…your lungs aren’t getting enough capacity or something. Something’s going on here. And I thought, why aren’t the doctors communicating?…He’s trying to do tests that the respiratory team should have already let him know what’s going on.”(Irene, P8) “She wanted me to go to…Where they do this, therapy for the lung. But they sent me a letter and they told me they fully booked. They can’t take me, I have to… But I don’t know if they put me on the waiting list or not.”(Antonella, P6) “They can only have you for so long….Because of funding, and they turn around and say, look, you know, sorry but I can’t see you anymore because the funding has stopped” (Neil, P11) “I remember once I went and I was on a mental health plan, and I thought it wasn’t going to cost me anything. And I finished up costing me $190. And at that stage, when you’ve got three kids, you don’t have a spare $190.” (Fiona, P10)
Barriers, therapies misaligned with patient preferences	“Yeah, they were psychologists and yes… and people that knew what they were talking about, but I just got sick and tired of the phone ringing all the time! Every second day or whatever to help me. To try and help me. But in the finish, I got fed up because each one was asking the same question over and over again. I’m repeating myself all the time and that wasn’t helping me. That was making me more depressed.” (Barbara, P2)
Memory, attention and decision processes Participants’ cognitive function and decision-making processes regarding treatment
Information retention and recall	“I don’t know, everything happened so fast. And I ended up with all these puffers and so unsure of what I was supposed to take.” (Irene, P8) “See things don’t stay in my head…that’s the only thing that frustrates me, that things don’t stay in my head.” (Cynthia, P13)
Decision-making	“Having to do my will and having to do, you know, power of attorney, make a decision whether I don’t, whether I want to “do not resuscitate”. Filling forms about my medical care. It’s just really, it’s frightened me, and I’m scared.” (Irene, P8)
Cognitive overload/fatigue	“I just can’t be bothered to be quite honest…you tell these people and they ring up and everyone’s asking the same questions over and over again. And I just get exhausted. I had it a while back. Each one was trying to help me, ringing up, asking the same questions and I was fed up in the finish.” (Barbara, P2)
Competing demands and priorities	“I didn’t try. So far, I got too much mucking around between doctors and nurses, up and down. And I fed up now.” (Mario, P5) “At the moment, I just haven’t got the time. As I said, I’ve got appointments, they’re cancelled, I’m waiting for them too”. (Barbara, P2)

What are the drivers or contributors to psychological distress in people with COPD?

Knowledge

Nearly all participants understood their respiratory diagnosis, and most appreciated the link between anxiety and breathlessness. Over half the participants recognised they had some form of psychological illness, for which they had received or were receiving treatment. A minority (less than half of participants) were equivocal about a mental health diagnosis despite this being documented in their medical record, or appeared to have limited mental health literacy, with one participant’s misattribution of symptoms related to anxiety to their respiratory condition. While patients reported receiving information about their respiratory illness from health professionals, patients still found it difficult to understand aspects of their treatment and prognosis. Participants who were self-aware of psychological distress appeared to have some knowledge of pharmacological treatments for depression and anxiety, however, seeking support from a psychologist was less frequently discussed.

Social/professional role and identity

Participants described a sense of disrupted identity and poor self-concept as a result of living with their respiratory condition, which may have contributed to the development of psychological distress. Loss of identity after migration, difficulties assimilating to life in Australia, possessing anxious personality traits, and losing one’s ability to participate in domestic duties or family life due to functional decline from COPD were all identified as drivers of psychological distress.

Social influences

Almost all participants identified smoking as a behaviour initially derived from societal norms and a desire to fit in with their peer group. Reasons for continued smoking, and use of other substances such as alcohol and recreational drugs, typically involved justification that these substances offered a means of self-medication for past traumas or emotional difficulties. Many participants identified smoking as the main cause for their lung condition, with a few former smokers expressing a sense of culpability, guilt and shame for their disease, which further exacerbated illness-related distress.

Environmental context and resources

Certain environmental factors were identified as drivers of psychological distress. A few participants were aware that they had been struggling with mood difficulties from an early age, as a result of adverse childhood experiences (e.g., death of a friend, becoming orphaned) or developmental trauma (e.g., physical or sexual abuse). Others attributed the onset of psychological distress to later life stressors such as marital problems, migrational trauma, or difficulties conceiving. A few believed that their mental health issues preceded the development of COPD and were secondary to difficulties coping with complex psychosocial circumstances.

Emotions

Several participants described experiencing psychological distress associated with impaired physical function from COPD, which left them feeling demoralised. These participants described frustration and exhaustion, not just towards their illness but also towards the demands of increasingly frequent healthcare visits and monitoring. Many discussed feeling ‘fed up’, hopeless, and despairing in the face of worsening respiratory function. Others feared the unknown and death, which were closely related to experiences of anxiety and panic from not being able to breathe properly. Guilt and self-blame were also emotions expressed by participants who viewed their COPD as a self-inflicted illness due to their smoking histories.

Optimism

Most participants described a lack of optimism about the trajectory of their lung condition, which contributed to psychological distress. Catastrophising and nihilistic attitudes of giving up and being ‘out of options’ were commonly reported constructs. Some expressed a degree of optimism, which stemmed from gratitude or acceptance regarding their current circumstances and learning to live with symptoms.

How does a person with COPD manage psychological distress, and what self-management approaches are used?

Skills

Non-pharmacological strategies such as deep breathing and relaxation techniques were frequently used by participants to manage their respiratory symptoms. Additionally, participants used pharmacological strategies such as inhalers to improve their breathlessness. Participants discussed various coping mechanisms to manage psychological distress associated with their conditions, including engaging in meaningful activities and seeking social supports. Moreover, participants with the technological skills to adapt to digital healthcare delivery (e.g., e-scripts, telehealth appointments) described greater self-efficacy managing their conditions, and experienced less psychological distress when faced with pandemic-related restrictions.

Beliefs about capabilities

Some participants expressed reliance on their carer or loved ones and indicated a belief that they were incapable of managing their conditions independently. When participants lacked confidence managing their physical symptoms, this was often tied to existential reactions of helplessness and pessimism reflected within the ‘Optimism’ domain. Interestingly, participants tended to report greater confidence managing psychological symptoms over physical ones.

Behavioural regulation

Activity-pacing and resting, alongside flexible planning were common behavioural strategies used by participants to cope with the impacts of their conditions on everyday life. Cigarette smoking and alcohol consumption were lifestyle choices adopted as coping mechanisms for various issues in participants’ lives, with a majority of participants also acknowledging the repercussions of these behaviours (e.g., development of COPD) in hindsight. While smoking cessation was described as challenging for many participants, a majority were forced to quit with the advent of worsening lung function from COPD.

Social/professional role & identity

Some participants struggled to disclose their physical or mental health struggles in a manner reflective of their usual tendencies to internalise emotions, while others were more help-seeking and predisposed to involve specialised healthcare professionals in their care. Several participants avoided or denied certain aspects of care (e.g., referrals to mental health specialists, offers of pharmacological treatments) that did not align with their self-identity and beliefs about their condition. By contrast, carers tended to express acceptance of their roles to support their loved ones, even when this necessitated lifestyle changes and assumption of new responsibilities.

Social influences

Participants described social interactions that impacted upon patients’ illness perceptions and help-seeking behaviours. Carers played a pivotal role in providing patients with emotional support, love, and guidance around self-management strategies. Part of carers’ influence also involved offering normalisation around psychological distress associated with somatic symptoms. Patients appeared better able to manage psychological distress associated with breathlessness when carers routinely assisted with distraction, talking through breathing techniques, providing encouragement, and reassurance. Moreover, carers’ own confidence with delivering home-based care may have influenced patients’ perceptions of self-efficacy.

Environmental context and resources

Along with emotional support, carers were discovered to have wide-ranging practical inputs: from assisting patients with mobility tasks and modifications to the home environment, to symptom recognition, medication adherence, and taking on the burden of domestic duties when patients were otherwise physically compromised. Patients’ abilities to self-manage at home and maintain functionality were largely assisted by the environments shaped by their carers.

What structured management approaches for psychological distress in COPD have been offered, and what is helpful/not helpful?

Beliefs about consequences

Mental health supports to cope with any emerging or existing psychological distress were met with variable resistance. Several participants held sceptical views towards the benefits of sharing illness experiences with a psychologist, while others recalled past negative encounters with mental health professionals, which consequently led to distrust and dissatisfaction. Some patients communicated a degree of internalised stigma towards mental health treatments, with the implication being that mental health care is only for those with severe mental health issues and not intended for ‘normal’ levels of distress. Additional concerns were raised regarding the side effects of recommended medication and fears of dependency, which led to some participants refusing to take prescribed treatments, including psychotropics.

Social influences

Participants were deterred from seeking formal mental health supports when it seemed their social connections were not in favour of a mental health diagnosis, their carers lacked mental health knowledge, or there were negative appraisals of mental health treatments within the family. Some participants expressed their confusion and misunderstandings regarding the difference between psychiatrists and psychologists, which reflected knowledge gaps seen in the ‘Knowledge’ domain. Negative societal attitudes towards medications such as morphine and its association with end-of-life also induced fear and reluctance among some participants to accept pharmacological treatments for physical symptoms, as well as for psychological symptoms more generally. Overall, common themes regarding social perceptions of mental health and management strategies indicated greater preference for self-management of psychological distress among participants, and perhaps some devaluation of formal mental health supports.

Environmental context and resources

Some participants reported important environmental facilitators such as easy access to prescribed medications, written medication summaries, clinician phone support, and home visits from medical professionals for ensuring the continuity of their care. Moreover, several participants described the positive impact of programs such as Hospital Admission Risk Programs (HARP) and longstanding doctor-patient relationships in fostering stability, trust, and ultimately facilitating access to effective treatments.

However, lack of communication and coordination between healthcare professionals, long waiting lists, funding limitations, and financial costs of mental health appointments were among several barriers reported by participants. Some participants also expressed frustrations towards repetitive and unhelpful interactions with health professionals, which were not aligned with their preferences or needs.

GPs were commonly reported as the first point of contact for mental health-related issues, and a majority of patients did not feel specialised mental health care was necessary for management of psychological distress. At least 5 patients identified accessing mental health supports in the context of receiving treatment for other physical health issues, including for chronic pain, drug and alcohol problems, and infertility issues. Very few patients identified receiving psychological therapies as part of routine respiratory care or in outpatient respiratory clinics. If psychological distress was accounted for in these settings, treatment usually came in the form of a pill, with variable explanation of its indications or recommendations to combine this with psychological therapy. Those who had been initiated on pharmacotherapy in the past for pre-existing mental health issues generally reported benefits; while others were strongly opposed to the idea of commencing medications for psychological distress if this was offered.

Memory, attention and decision processes

Some participants expressed confusion and uncertainty about their medications, while others were overwhelmed and feared making decisions around creating wills, appointing a power of attorney, and establishing do-not-resuscitate orders. Cognitive overload and fatigue were also raised by some participants who were exhausted due to being asked repetitive questions by various healthcare professionals, often ironically in regard to their mental health. Many participants also reported frustrations about frequent healthcare appointments or contact, which sometimes led to disengagement with care.

Discussion

This qualitative study used the TDF to explore patients’ and carers’ views and experiences of psychological distress in COPD. Our study adds to an evolving evidence-base regarding the management of comorbid psychological distress in this patient cohort^3,4,7,23 and identifies several barriers and facilitators to uptake of mental health care from the perspectives of patients and their carers. Figure 2 summarises future recommendations for optimising the management of psychological distress in COPD, which will be discussed in further detail below.

Fig. 2.

Future recommendations for optimising the management of psychological distress in COPD.

Psychoeducation and normalisation of psychological distress

Our findings suggest that patients had variable knowledge of their physical health, mental health, the interconnectedness of these, and their treatment options. This is similar to previous research indicating that some patients with COPD lack knowledge about mental health²³, while others are aware of co-existing psychological issues, but have limited understanding of available treatments⁴⁰. Although many patients were in agreement about a link between symptoms of COPD and anxiety, a majority preferred to prioritise management of their physical condition over psychological distress. This usually occurred for several complex reasons: salience of physical symptoms during acute exacerbations, reluctance to disclose psychological distress due to internalised or public stigma, limited understanding of overlapping symptoms, perceived resolution of prior mental health issues, and competing social or financial demands. Similar findings have been reported in other literature^23,40.

Moreover, contrasts were found between the ‘knowledge’, ‘beliefs about capabilities’ and ‘behavioural regulation’ domains. Some patients described self-confidence managing their mental health, usually with their own experiential methods, however it was clear they had received little information (or sometimes misinformation) about other therapeutic supports that might be available, or of additional benefit. Carers typically echoed patients’ knowledge gaps about mental health symptoms and treatments. These findings suggest education about psychological distress should be a key intervention target in chronic disease management programs. Further, psychoeducation needs to be multifaceted and inclusive of patients, carers, and health professionals involved in the management of COPD. Other studies have likewise advocated for the broader mental health education and upskilling of health professionals working with people with COPD, given the high prevalence of anxiety and depression within this cohort^23,40–43. Ultimately, patients and carers need to be well-informed about treatment choices for psychological distress before deciding whether to engage with more structured therapeutic supports, as knowledge gaps may be a barrier to improving mental health outcomes.

What naturally follows from psychoeducation is a need for greater normalisation of comorbid psychological distress in COPD. Complex emotional reactions to breathlessness accompanied by conditioned behavioural responses (e.g., activity avoidance) were frequently reported by participants, and have been well-documented in other parts of the literature as manifestations of the ‘dyspnoea-anxiety’ cycle, or as ‘vicious cycles’ of depression and disability^7,21,44. Previous studies have assumed that normalisation of psychological distress in chronic disease may be a barrier to screening and provision of treatments, as mental health problems become ‘over-shadowed’ by physical symptoms and remain under-recognised^40,45. However, our findings suggest that normalisation of negative psychological reactions in COPD may instead encourage patients to seek support for emotional issues. Others have also proposed that when so-called ‘normal’ psychological reactions in COPD are noticed early by psycho-educated family and health professionals, the risks of further spiralling into more severe forms of mental disorders can be prevented^3,44. Awareness of the prevalence of subclinical forms of mental disorders in COPD may prompt more open conversations about psychological distress in clinical practice, and lead to further targeted mental health screening and intervention if necessary^23,44.

Self-management principles and individualised patient care

Patient’s priorities for addressing psychological distress in COPD included the use of their own self-management approaches, as well as having access to more individualised care within the healthcare system. Specific to mental health interventions, some participants described psychological treatments that were trialled but did not align with their preferences, which became a deterrent for engagement in future structured therapies. Others maintained confidence in their own self-management skills, which typically related to TDF domains of illness acceptance (‘optimism’), ‘social influences’, ‘beliefs about consequences’, and facilitators within their ‘environmental contexts’. Interestingly, patients tended to report greater self-confidence and mastery over psychological distress compared to respiratory symptoms, perhaps because there was a sense of futility regarding limited treatment options for their lung condition, as opposed to possible therapies available for psychological distress. Further, the belief that mental health symptoms were issues of the past (and had been overcome) provided patients with some self-assurance they could manage psychological distress without formal mental health supports.

Importantly, these findings are aligned with the concept that people with chronic conditions become ‘experts’ in their own right; and health professionals should act to support patients’ own self-learned self-management strategies, i.e. through education, goal setting, reinforcing personal resources, and providing clinical guidance on symptom management when required^43,44. Previous literature in other disease cohorts have also reflected patients’ preferences for utilising personal over professional supports in the first instance when managing mental health problems^46,47.

Our findings also point to the value of health professionals working collaboratively with patients to tailor self-management strategies, and to consider a more ‘blended’ approach to mental health care^6,14,43.Traditional self-management interventions tend to incorporate behaviour change techniques that target mental health symptoms, and are likely to enhance patients’ own pre-existing capabilities⁴³. However, research investigating the efficacy of clinician-guided self-management interventions for mental health outcomes in moderate-to-severe COPD have produced mixed results². A randomised-controlled trial (RCT) of a psycho-educative self-management intervention showed improvements in patients’ feelings of mastery, with positive effects on psychological wellbeing⁴⁸. Conversely, other reviews of COPD-specific self-management interventions have reported no effects on mental health outcomes⁴⁴. Further work should investigate the long-term efficacy and acceptability of supported self-management interventions for psychological distress in COPD, taking into account patients’ individual preferences and goals for treatment.

Role of primary care and collaborative care models

Regarding structured management approaches for psychological distress, patient-perceived barriers to uptake were similar to those proposed in previous literature^23,40. Lack of interprofessional communication, delays in follow-up, limited knowledge of existing services, confusion regarding referrals, and perceived unavailability of care were commonly-cited barriers. Notably, these concerns also pertained to accessing the wider health system more generally, and not just mental health supports. Consistent with other studies, some patients described a preference for mental health treatments within the primary care system²³, while others reported a high burden of care for other physical issues⁴⁰, such that more structured management approaches for psychological distress were de-prioritised. Intuitively, patients tended to resort to their own self-management strategies instead of seeking formal supports within the health system.

Meanwhile, potential facilitators for patients’ uptake of mental health care included: trusting relationships with health professionals, involvement of home-based outreach services (e.g., mental health workers via patient’s disability insurance scheme), and access to psychosocial supports during pulmonary rehabilitation (PR). Similar findings are seen in other contexts^7,23,40,49, where a broadening of roles to include nurses and allied health professionals delivering psychological interventions have been highly successful and well-received amongst participants. Expanding on prior research^7,23,40, our study provides a strong rationale for the implementation of collaborative care models for COPD within primary care and pulmonary rehabilitation. A collaborative approach between mental health professionals, primary care providers, and PR experts would enable more streamlined treatment pathways for patients seeking structured interventions for psychological distress. Moreover, findings from this TDF analysis point to the utility of future programmes that encompass patient education, supported self-management, specific psychological interventions (e.g., cognitive behavioural therapy), and regular interprofessional communication with patients’ respiratory specialists.

Integration of lived experience

Across other sectors, there is also increasing focus on the benefits of lived experience participation for improving mental health awareness, and bridging the gap between health providers and service users⁵⁰. Inclusion of people with lived experience of COPD and comorbid psychological distress within a collaborative care model for COPD may represent a new frontier for service development and is worthy of further exploration.

Further considerations for collaborative care

Finally, within the domains of ‘social influences’ and ‘behavioural regulation’, patients’ responses also revealed a complex association between substance use, psychological distress, and COPD. Where a majority were cognisant of the negative health consequences of smoking or drinking, and regretted these lifestyle choices, several people referenced these behaviours as a form of self-regulation to cope with life’s stressors. Prior research has indicated that a high proportion of patients engage in smoking and problematic drinking beyond their initial COPD diagnosis⁵¹, however the temporal relationship between these behaviours and mental distress remains unclear. As others have suggested, best-practice interventions for reducing substance use comorbidity in COPD should be an area of collaborative focus, given there are likely important interactions between mental health and physical health outcomes^4,51.

Study limits and strengths

This study adds to a body of knowledge examining the barriers and facilitators to managing psychological distress in people with COPD. While some studies have explored the barriers to mental health service provision within this patient group, none have specifically studied patients’ views and experiences of psychological distress in COPD using the validated Theoretical Domains Framework. A strength of the TDF is its lack of confinement to a particular psychological theory and therefore its capacity to capture a wide range of theoretical and organisational constructs³¹. To reduce the risk of researchers’ subjectivity impacting the interpretation of results, all members of the research team met to discuss content analysis and utilised a shared coding scheme. Recruitment of participants from similar cultural backgrounds (English-speaking) and within metropolitan areas may have reduced the generalisability of our results to other populations or geographical settings. The greater proportion of female participants compared to males may have influenced results, given prior studies indicating an association between female sex and higher rates of mental health disorders in COPD⁵². Moreover, data saturation for carers was sub-optimal given only two carers’ perspectives could be obtained, in part due to restrictions imposed by the COVID-19 pandemic during the initial recruitment process.

Conclusion

Despite the high prevalence and considerable impact of psychological distress on COPD outcomes, it remains an underdiagnosed and undertreated comorbidity. This study has provided some useful recommendations for understanding the individual behavioural, social, and environmental factors influencing patients’ experiences of psychological distress in COPD, and their decisions regarding uptake of mental health care. What emerges is perhaps no single solution, and instead multiple future considerations for addressing a profoundly complex problem. Our findings support the need for increased patient education about psychological distress in COPD, the diversification of therapeutic approaches to include supported self-management, and greater interprofessional collaboration amongst clinicians involved in the care of people with COPD. Collaborative care models facilitating the integration of mental health professionals within primary care and pulmonary rehabilitation settings may address some of the barriers to patients’ engagement with mental health treatments, and provide scope for improving the quality of life of this vulnerable patient group.

Author contributions

N.S. and E.B. designed the study. J.W. collected the data. Data analysis was undertaken jointly by J.W., L.L. and N.S. All authors contributed to the interpretation of the data and writing the manuscript.

Data Availability

The data analysed in this study are available from the corresponding author upon reasonable request.

Competing interests

The authors declare no competing interests.

Supplementary information

The online version contains supplementary material available at 10.1038/s41533-025-00430-0.