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.Table 3 Research Question 2: Self-management approaches for psychological distress.Table 4 Research Question 3: Structured healthcare approaches to managing psychological distress.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.