Abstract
Background
People with interstitial lung disease (ILD) were deemed more vulnerable to the SARS-CoV-2 virus and isolated as a means of reducing risk of infection. This study examined the impact of the pandemic on daily life, psychological wellbeing and access to healthcare and identified approaches undertaken to remain safe.
Methods
Four specialist clinics in tertiary centres in Australia (Victoria: two sites; New South Wales: one site; Western Australia: one site) recruited patients with ILD during an 8-week period from March 2021. Semi-structured telephone interviews were conducted with transcripts analysed using principles of grounded theory.
Results
Ninety participants were interviewed between April and December 2021. Participants were predominantly female, former smokers with an average age of 66 years. IPF and connective tissue-ILD being the most common subtypes. Five main themes were identified: vulnerability reduced social interaction and isolation, access to healthcare services and support, staying active, emotional and psychological impact. Self-management strategies included staying active both physically and mentally.
Discussion
Self-management was key to managing the impact of the pandemic. In combination with advances in technology, implementation of strategies for monitoring wellbeing and support for self-management provides an opportunity to leverage the lessons learnt to ensure a more individualised model of care for people with ILD.
Keywords
Introduction
Interstitial lung diseases (ILDs) are disorders of lung inflammation and fibrosis with poor prognosis and a progressive symptom burden that negatively impact patients’ physical, psychological and social wellbeing. 1 People with ILD are susceptible to pulmonary infections due to their underlying lung disease, age, treatment with immunosuppressive agents and comorbidities. 2 During the COVID-19 pandemic, people with ILD were deemed at increased risk of contracting the infection and mortality from SARS-CoV-2, compared to non-ILD patients.3–5
In Australia and around the world, health authorities strongly advised people at greater risk to isolate and ‘socially shield’ themselves as a means of reducing infection risk for COVID-19. There were heightened levels of stress and anxiety in daily life resulting from periods of enforced restrictions and isolation for people in general. Alongside this, there was a rapid transformation of healthcare services globally with expansion of telehealth through telephone or video consultations 6 with significant impact on the availability of care providers and support services for people with pre-existing respiratory conditions. 7 As a result, many with chronic conditions found themselves having to rely on their self-management capabilities.8–10
Self-management plays an important role in the management of chronic diseases. It has been defined as an individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition.9,10 Effective self-management requires a range of skills such as personalising coping strategies, action planning, problem-solving and building support networks with healthcare providers and the community often acquired through the engagement and support provided in part by healthcare professionals and through self-management interventions. 11 In respiratory diseases such as asthma and chronic obstructive pulmonary disease (COPD), self-management interventions are recommended by clinical guidelines however, the effects of these interventions are varied and inconsistent across studies.11,12 In ILD, such recommendations remain largely under-developed and are often based on findings from COPD which may not necessarily be relevant to this cohort. 13
The aim of this study was to explore the lived experiences and self-management approaches used by people with ILD as they navigated the COVID-19 pandemic, using a qualitative approach. Understanding these experiences are important for identifying opportunities for implementation and delivery of safe, effective care and support to people with ILD in post-pandemic times as ongoing threats posed by variants of the SARS-CoV-2 virus and other significant respiratory viruses (e.g. respiratory syncytial virus, influenza) remain a source of anxiety and uncertainty for vulnerable populations.
Methods
Study population
This qualitative study was one component of an overarching study that looked at the impact of the COVID-19 pandemic on people with ILD. Study details have been reported elsewhere. 6 In summary, participants were eligible if they were aged ≥18 years with a diagnosis of ILD prior to 2020, were an existing outpatient at the ILD clinic at each respective site, attended in-person at each respective ILD clinic during the 8 week recruitment period and were able to provide informed consent. The sites were located within four metropolitan tertiary centres: two sites in Victoria (recruitment period - March to April 2021), one in NSW (recruitment period - May to June 2021) and one in Western Australia (recruitment period - August to September 2021). Outbreaks of SARS-CoV-2 across Australia varied in time and location with significant lockdowns in NSW and Victoria during the study period. 14
Qualitative interviews
Semi-structured interviews were conducted by telephone using an interview guide developed by authors and piloted by people with ILD. [Supplement file 1] Interviews were conducted by a non-clinician health researcher experienced in qualitative methods but not directly involved in management of people with ILD (GT). Interviews were continued until all eligible participants had been given the opportunity to participate and data saturation was reached, that is, the point when no new information or themes are observed in the data of interviews. 15
Data analysis
Interviews were audio recorded, de-identified and transcribed verbatim. Transcripts were uploaded into NVivo software to assist with open coding (creation of descriptive codes based on wording and meanings emerging from original data). Re-identifiable transcripts were independently read by three researchers (GT, BK, AEH) to gain familiarity with the content and were analysed using the principles of grounded theory. 16 Researchers are experienced in qualitative data analysis, with AEH having extensive clinical experience in providing ILD care. Two reviewers (GT, BK) created descriptive codes that were organised as labels reflecting the underlying information. Relationships between codes were examined and organised as themes (axial coding). Initial themes were compared and discussed before final themes were agreed upon through iterative discussions amongst all three researchers (GT, BK, AEH). Representative quotations were extracted for each theme. Representative quotations were extracted for each theme. Demographic and clinical data were extracted from medical records.
The study was approved by the Alfred Hospital Ethics Committee (#67455).
Results
Characteristics of the 79 participants who participated in telephone interviews and provided clinical data.
CTD-ILD: Connective tissue disease-ILD; HP: hypersensitive pneumonitis; IPF: idiopathic pulmonary fibrosis; NSIP: Nonspecific interstitial pneumonia; 6MWT: 6 minute walking test; FVC% pred: forced vital capacity % predicted; DLCO%pred: diffusing capacity for carbon monoxide %predicted; K-BILD: The King’s Brief Interstitial Lung Disease; USCD-SOB: The University of California San Diego Shortness of Breath.
aRefers to last result prior to date when face-to-face clinic consultations changed to telehealth.
Given the differences across sites in terms of the COVID-19 case numbers and waves, the pandemic-related restrictions and different recruitment periods, all eligible participants at each site were given the opportunity to share their experiences. As such, data saturation was evaluated for each site separately, and within the overall thematic analysis.
Five key themes emerged from our synthesis: vulnerability to infection and possible consequences; reduced social interaction and isolation; access to and availability of healthcare services and support; staying active and healthy; and the emotional and psychological impact.
Theme 1: Vulnerability to infection and possible consequences
An overwhelming concern for people with ILD was the ‘constant threat’ of contracting the virus and the belief that given their underlying condition, they would end up in intensive care and succumb to the infection. Many reported that the fear of becoming infected impacted every decision they made in terms of leaving the house, socialising, seeing family, working, exercising, and visiting health professionals. For some, there was the added concern for extended family members. Conversely, some participants reported remaining more aware but refused to let the risk of exposure overtake their lives.
Participants reported a heightened sense of cautiousness and awareness of possible exposure environments. Most diligently followed the recommendations issued by health officials and endorsed by health professionals, including stringent hand hygiene practices, wearing of masks and social distancing. Some reported taking extra precautions such as self-imposed extended periods of isolation even after restrictions were eased. Others reported feeling that home was the only safe place so were left feeling like they were ‘basically a prisoner in my own home.’
Representative quotes for main themes identified from interviews with participants.
Theme 2: Reduced social interaction and isolation
A combination of enforced and self-imposed restrictions led many to significantly reduce their social interactions as a means of remaining ‘safe.’ Participants commonly reported isolating themselves from family and friends, ceasing social activities and outings and avoiding high-risk environments (e.g. clinic waiting rooms). Some participants reported being able to continue working from home, others needed to leave much-loved jobs due to the high exposure risk, whilst many were not able to continue with various volunteering activities. As a result, many reported that the isolation was their greatest difficulty, clarifying that it was not because they were alone, but rather the lack of contact and in-person interaction with others. For participants who worked from home, some found that the lack of in-person interactions was quite challenging and lonely, although many were grateful to be able to continue working.
For some, the experience of feeling isolated was not new, given they were already self-isolating pre-pandemic to some degree due to their perceived susceptibility to infection. Nevertheless, they found the ongoing isolation difficult to bear at times. For others, the isolation periods were viewed more positively with some expressing an increased appreciation for people and life. It allowed them time to do things that they enjoyed such as gardening or learning new skills and gave some more time for their family, while others enjoyed being on their own. In addition, some participants reported improvement in health due to less interaction with others that led to fewer episodes of respiratory tract infections.
Staying busy was a common approach to dealing with isolation. Many reported taking up new hobbies, gardening or reading as ways of managing. In addition, many utilised the availability of technology (e.g. Facetime) to stay in touch with family and friends, which provided a sense of connection. Acknowledging that they were not the only ones in the situation helped some to deal with the lack of contact. (Table 2).
Theme 3: Access to and availability of healthcare services and support
Although more in-person appointments were reported in Western Australia which was fairly insulated from COVID cases during the study period, findings between sites were not significantly different. Across all sites, participants reported that appointments with HCPs and services (e.g. lung function testing) were either cancelled, delayed or postponed, with limited availability of general practitioners (GPs) for some. Others in rural/regional settings were grateful for telehealth options that allowed them to keep in touch with their HCPs. The fear of exposure led to hesitancy in attending appointments (e.g. getting on public transport or sitting in waiting rooms) with some participants self-assessing their needs before consulting a HCP.
Positives and negative aspects of telehealth as reported by participants.
Participants generally preferred face-to-face consults but understood that this was not always possible. Face-to-face consultations were deemed unnecessary all the time, particularly if tests were conducted prior and the consult focused on discussing results that were not of concern (e.g. unchanged lung function), in patients who were stable, and for referrals or prescription renewal. However, given telehealth was not acceptable to all, participants stressed that they should be offered a choice as to the format of consultations.
Participants reported receiving support from various HCPs including GPs, respiratory physicians, and nurses, as well as allied health professionals such as physiotherapists and psychologists. Participants felt they were “well supported” and not isolated from healthcare during this time. However, some felt that there was no additional support other than what they received during telehealth appointments.
Information on the impact of SARS-CoV-2 infections on ILD, their vulnerability status, and efficacy of vaccinations for different ILD subtypes was perceived as somewhat lacking. Participants also indicated the need for clear and consistent advice on what to do in terms of isolating due to vulnerability, getting vaccinated and how best to access HCPs.
The need for better government support for more vulnerable groups in the community was expressed by some participants. This included providing exemptions for travel during times of restrictions and state border closures for medical appointments, and a more streamlined and less taxing administrative process for travel approval. Participants also indicated that a separate telephone support line specifically for vulnerable people would be helpful in terms of addressing their uncertainties and providing support (Table 2).
Theme 4: Staying active and healthy
A major impact of the pandemic for many people with ILD was their ability to remain physically active. From a loss in incidental exercise to the closure of pulmonary rehabilitation programs in both hospitals and community settings as well as gymnasiums, many were left to their own devices. Many reported on the importance of keeping active to maintain their lung health, but expressed that maintaining exercise was challenging. Some indicated they became a ‘little lazy and (tended to) forsake exercise’ with subsequently impacted their wellbeing in terms of their sleep patterns, diet and mental health. Participants also reported curbing the time they spent outside for walks as they felt ‘scared’ with many people also out and about. Others improvised by taking their dogs for walks, doing online exercise classes or simply walking around their homes.
Diet was another health issue reported by some participants. Increased “comfort eating” was commonly reported. Others reported a loss of appetite that was attributed to pre-existing conditions and the reduction in movement. For purchasing of provisions, many participants reported that trips to the supermarket were short, less frequent and during off-peak times. Others resorted to having family members shopping for them or using online options (Table 2).
Theme 5: Emotional and psychological impact
Participants expressed feeling a wide range of emotions during the pandemic. These included increased anxiety and fear, feelings of isolation especially from family, as well as anger at the lack of concern by some family members and the public regarding their vulnerability. Some expressed their anger and regret associated with the inability to undertake activities on their bucket lists and the fact their limited lifespan was slipping away, whilst others contemplated the consequences of succumbing to the infection and leaving children without a mother.
Many expressed how the lack of disease monitoring (e.g., through lung function testing) and cancelled medical appointments led to a loss of hope and a less positive mindset. The lack of socialisation, reduced physical activity and lack of freedom to venture out and do things led some to report feeling ‘depressed.’ Some reached out to HCPs for support in developing a mental health plan, whilst others took up various activities and tried to remain busy as a means of staying ‘mentally healthy.’ This included keeping an active mind, getting outside even if only in their own backyard, and mindfulness programs. For many, the isolation negatively impacted their mental and physical health creating a sense of loneliness particularly for those living alone or in rural areas, or those already socially isolated due to pre-existing health issues. Some participants expressed a more pragmatic attitude, “well, it is what it is, and there’s nothing I could do about it.” They took things in their stride finding some consolation in the fact that they were not the only ones going through a difficult time (Table 2).
Discussion
This study provided insights into the impact of the COVID-19 pandemic on the daily lives and wellbeing of people with ILD as they navigated through unprecedented times. The overwhelming concern expressed by participants was their perceived vulnerability that led to a heightened fear of infection. This fear underpinned decisions and measures they took to stay ‘safe,’ which included minimising their social and physical interactions with family, friends, HCPs and for many, taking refuge in their homes. For some, this had negative repercussions on physical health and mental wellbeing.
Self-management forms an important part of living with chronic respiratory diseases such as ILD. Prior to the pandemic, some had implemented various approaches to managing their physical and mental health. Many kept physically active through daily activities such as walking or attending gymnasiums. Others utilised social and psychological support to help them deal with their disease. Early in the pandemic, many of the fundamental ILD services that support self-management, such as appointments with HCPs, lung function testing and pulmonary rehabilitation programs were either ceased or became challenging to attain. As a result, many felt that they have been ‘left to their own devices’ when it came to managing and monitoring their lung health. Participants reported having to self-monitor, problem solve, make decisions on what activities/outings they were willing to undertake given their vulnerability, initiate contact with HCPs and develop action plans to help them maintain their health. Such behaviours represent core skills and practices of self-management and highlight the importance of empowering people with ILD to take more control of their disease management. 16
During the pandemic, the psychological impact of extended social distancing and the resulting isolation were exacerbated, with separation from family members being the most reported cause of feeling isolated. Such feelings have been associated with negative consequences including heightened anxiety and depression, hesitancy in seeking healthcare and social support, and increased morbidity and mortality.17–19 In people with IPF, having social support was a positive influence on life prior to the pandemic and was critical in helping them cope during the pandemic. 20 Emerging from the pandemic, HCPs will need to remain vigilant of the possible long-term consequences of isolation that may compound the existing unmet psychological needs of people with ILD. 1
The lack of fundamental ILD-related assessments such as lung function and imaging caused anxiety and stress as participants were concerned about uncertainties in their lung disease status. Pre-pandemic, home monitoring was gaining increasing attention in ILD and showed feasibility and reliability in this population. This was accelerated during the pandemic and has the potential, for wider implementation as part of ILD self-care.21,22 Whilst the increased availability of telehealth options for ILD will be a positive legacy of the pandemic, it is clear that ongoing care models must provide patients with choice of consultation type, which may vary according to clinical stability and individual preference. There is also a pressing need for telehealth provision of ILD nurse consultations, psychology and other allied health services. Digital options for peer support, such as that operated by Lung Foundation Australia since 1990, may also contribute to comprehensive supportive care. 23
Participants reported seeking information from reputable health department websites regarding aspects of the pandemic such as high-risk areas and vaccinations. Many expressed the need for better government support for vulnerable members of the community especially during times of disruptions to usual health services. Previous studies reported the need for accurate information provided through authentic community-led outreach programs using appropriate channels to disseminate information to overcome potential mistrust, misinformation and confusion, particularly for vulnerable people and minority groups. 24 Access to context-specific resources and information has the potential to alleviate some anxiety and concerns for those more vulnerable.25,26
Staying physically active and healthy was another major challenge for participants in this study. The self-perceived reporting of a deterioration in lung health was mainly attributed to lack of physical exercise. This was corroborated in our previous work showing that 42% of participants reported doing ‘a lot less’ physical activity during the pandemic, with similar findings reported in other studies.6,27,28 Most participants resorted to developing their own means of staying active. Going forward, options such as telerehabilitation or home rehabilitation that have been shown to produce similar outcomes to centre-based programs may provide greater access and be a more viable option for many.29,30
Strengths of the study included the multi-site recruitment and sample size. Although the findings may not represent all views and experiences of people with ILD, participants were recruited from tertiary centres that manage patients from large catchments incorporating regional areas. Participants represented a wide range of demographics, ILD types and disease severities. Variations in access to healthcare services between the different sites depending on the waves of cases may have limited our ability to directly relate experiences to the same pandemic stage. Given all interviews were conducted by telephone, there is the possibility that non-verbal cues and nuances were not captured. However, incorporating interviewer field notes taken during the interview with the transcripts and representative quotes expressed by participants, allowed us to capture the main essence of the participants’ views and experiences. Conversely, the telephone option enabled participants to contribute their experiences during COVID times.
Conclusion
People with ILD described self-management and monitoring strategies that were key to managing the impact of the pandemic, including staying physically and mentally active. In combination with advances in technology, implementation of support for self-management and psychological wellbeing provides an opportunity to leverage the lessons learnt from the pandemic to ensure a more personalised and comprehensive model of care for people with ILD.
Footnotes
Acknowledgements
The study acknowledges the time and contribution of all participants who shared their lived experiences on which the study findings are based.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the NHMRC Centre of Research Excellence in PF (GNT1116371).
