Experiences of Individuals With Chronic Obstructive Pulmonary Disease and Their Caregivers During the Pandemic: A Systematic Review

ABSTRACT

Aim

To explore the experiences of individuals with Chronic Obstructive Pulmonary Disease (IwCOPD) and their caregivers during the COVID‐19 pandemic.

Design

Systematic review, adhering to PRISMA guidelines (PROSPERO ID: CRD42022327424).

Data Sources

PsycINFO, PubMed, EMBASE and Web of Science.

Methods

Databases were searched in April 2022 using keywords relating to COPD, caregivers/patients and COVID‐19. Studies collecting data on experiences of IwCOPD or their informal caregivers during the COVID‐19 pandemic were included. Following screening and quality appraisal by two reviewers, a qualitative synthesis was conducted.

Results

Of 2931 abstracts screened, 24 articles met the inclusion criteria. For IwCOPD, pandemic impacts on physical and mental health were found, including fears of contracting COVID‐19, changes in exacerbation levels, reductions in physical activity, and increases in depression and anxiety. Changes to healthcare management, including access to telemedicine, and positive adaptations, such as increased medication adherence, self‐preservation and self‐care, were also reported in the studies reviewed. Caregivers expressed fear of their care recipient contracting COVID‐19 and changes in the home environment.

Conclusion

While the pandemic led to considerable negative experiences for IwCOPD, review findings suggest that some positive experiences were also reported.

Implications for Profession and/or Patient Care

Findings may help inform the development of physical and mental health supports for IwCOPD and their caregivers.

Impact

This study sheds light on the limited evidence regarding experiences of IwCOPD and their caregivers during the height of the COVID‐19 pandemic. As many IwCOPD continue to be impacted by COVID‐19, these findings have the potential to inform healthcare providers how they may better support IwCOPD and their caregivers in numerous aspects of their healthcare management and their daily lives.

Patient or Public Contribution

The lead author's experience as a COPD caregiver acted as Public and Patient involvement input.

What Does This Paper Contribute to the Wider Global Clinical Community?

(1) The review sheds light on the considerable impact the pandemic had on the mental and physical health of IwCOPD. (2) It identifies vulnerable areas where support could be improved for IwCOPD and their caregivers, and how support could be improved.

Relevancy to Nursing Open

People with chronic obstructive pulmonary disease require considerable care and support from nursing professionals. This review highlights the care needs and support that may be beneficial for this group and is relevant to Nursing Open on nursing practice and research.

1. Introduction

Chronic obstructive pulmonary disease (COPD), including emphysema and chronic bronchitis, is a progressive and potentially life‐threatening lung disease (WHO 2017). Typically diagnosed in older adulthood, with a higher prevalence among males, COPD is mainly caused by exposure to tobacco smoke but can also be influenced by air quality, occupational pollution and long‐term asthma (WHO 2017). The assessment of IwCOPD is based on the patient's symptoms, their exacerbation history and the severity of airflow limitation, as determined by a spirometry test (Vestbo et al. 2013). However, while COPD can be managed successfully, of all respiratory diseases, COPD accounts for the highest rate of deaths (Soriano et al. 2020).

Individuals with COPD (IwCOPD) are often required to adapt to new challenges in relation to healthcare management and complications arising from exacerbations. It is likely that the COVID‐19 pandemic compounded such challenges for IwCOPD. For example, it is well established that contracting COVID‐19 put IwCOPD at an increased risk of admission to intensive care units (ICU) and death (Calmes et al. 2021), while a systematic review showed that severe COVID‐19 outcomes were more prevalent among older male individuals who had respiratory difficulties, especially COPD, and who currently or formerly smoked (Sanchez‐Ramirez and Mackey 2020). However, less is understood about the diverse impacts that the pandemic had on patient and caregiver experience.

While COPD cannot be cured, it can be managed with treatment, including bronchodilators (inhalers), corticosteroids, exercises to build up lung strength and oxygen therapy. Physical exercise is an important part of the maintenance of COPD, as a sedentary lifestyle has been associated with mortality and worse outcomes (Furlanetto et al. 2017). Medication adherence is also important in disease management, yet evidence shows that after 1 year of diagnosis with lung diseases, the patient's adherence deteriorates (Yildiz et al. 2021). These challenges may have been compounded during the pandemic.

Following discharge from the hospital after an exacerbation, COPD is typically managed in a home care setting, requiring significant support from family members who act as informal caregivers (Cruz et al. 2017). However, informal caregivers can experience caring as a burden that may have negative effects on their own health (Zhang et al. 2024), particularly as informal caregiving is often provided by those who are of an older age themselves (McGarrigle 2021). Implications on caregivers' work and social life may arise, including leading to feelings of loneliness (Koopman et al. 2020) and isolation (Soilemezi et al. 2017). In the context of the pandemic, the reduced availability and access to formal support may have increased burdens for this group.

COPD impacts individuals in a number of ways. Notably, IwCOPD experiences an overall decline in the quality of life with activities of daily living compromised (Miravitlles and Ribera 2017). In addition, the disease has also been shown to have comorbidity with anxiety and depression (Miravitlles and Ribera 2017). Equally, as indicated above, caregivers of IwCOPD may be negatively impacted due to experiencing severe levels of caregiving burden and low quality of life (Yi et al. 2021).

The pandemic may have impacted IwCOPD and their caregivers in a number of ways. For example, the increased risk to physical health following a COVID‐19 infection may have increased feelings of fear and anxiety among this cohort; however, a few studies have focused on the mental health impacts for IwCOPD. Conversely, the pandemic may have had a positive impact on some health behaviours of patients. For instance, the onset of the pandemic increased adherence to medication with the threat of contracting COVID‐19 (Kaye et al. 2020; Yildiz et al. 2021) and their informal caregivers.

2. Aims

This systematic review aims to explore the experiences of both IwCOPD and their informal caregivers during the COVID‐19 pandemic. Exploring the experiences of these cohorts will shed light on the impact the pandemic had on the mental and physical health of IwCOPD, as well as giving an insight into the status of healthcare and caregiving during the pandemic period. Findings will have the potential to identify areas where support could be improved for IwCOPD and their caregivers. This information will be helpful in identifying how best to support IwCOPD and their caregivers in the aftermath of the pandemic.

3. Methods

3.1. Design

This review was conducted in compliance with the Preferred Reporting Items for Systematic review and meta‐analysis (PRISMA) (Page et al. 2021) guidelines. The protocol is registered with the Prospective Register for Systematic Review Database (PROSPERO) (PROSPERO ID CRD42022327424) at https://www.crd.york.ac.uk/PROSPERO. Ethical approval was not required as the systematic review was performed on published data.

3.2. Search Methods

Searches of four electronic databases (PubMed, PsycINFO, Web of Science and EMBASE) were completed on 23 April 2022 to identify articles pertaining to the experiences of IwCOPD and their caregivers during the COVID‐19 pandemic. The search timeframe was from 1 January 2020 to 23 April 2022. The initial date was selected from trial searches, indicating that no relevant articles existed prior to this time. To ensure an exhaustive review, the search strategy was built up considering a total of 48 terms relating to (1) COPD, (2) caregiver or patient, and (3) COVID‐19. Consideration was given to MeSH (Medical Subject Headings) terms in PubMed, Emtree Thesaurus in EMBASE, and field topics in Web of Science and PsycINFO. Search terms and syntax were also consulted from other published systematic reviews to ensure the inclusion of a comprehensive search syntax. The final search syntaxes were verified by Authors 1 and 3. Syntaxes were stored in an Excel file. The search strategy, terms and syntax are provided in Table S1.

3.3. Inclusion and Exclusion Criteria

Studies of any design were considered eligible for inclusion if they contained primary data, either qualitative or quantitative, pertaining to experiences of IwCOPD or informal caregivers of IwCOPD during the COVID‐19 pandemic. The inclusion and exclusion criteria used the SPIDER (Sample, Phenomenon of Interest, Design, Evaluation, Research type) criteria framework (Cooke et al. 2012), as shown in Table 1.

TABLE 1.

Study inclusion and exclusion criteria according to the SPIDER framework (Cooke et al. 2012).

SPIDER criterion	Inclusion criteria	Exclusion criteria
Sample	IwCOPD, family/informal caregivers	Patients without a COPD diagnosis, professional caregivers
Phenomenon of interest	COPD experiences	Experiences of other chronic illnesses
Design	Qualitative, quantitative or mixed methods studies	Review articles, Systematic reviews
Evaluation	Experiences during the COVID‐19 pandemic	Experiences prior to pandemic time
Research	All relevant study types Peer‐reviewed journal articles Full text available in English	Non‐peer reviewed articles Not in the English language

Abbreviations: IwCOPD, Individuals with Chronic Obstructive Pulmonary Disease; SPIDER, Sample, Phenomenon of Interest, Design, Evaluation, Research type.

3.4. Search Outcome

The results of the database searches were exported to the standardised platform Rayyan (Ouzzani et al. 2016), which was used to screen studies. After duplicates were removed, title and abstract screening were completed by two reviewers (Authors 1 and 2) independently. Full text screening followed, again screening independently. Discrepancies were resolved through discussion, with input from a third reviewer (Author 3) in cases of conflict. Studies identified as eligible progressed on to the data extraction stage.

3.5. Quality Appraisal

Authors 1 and 2 independently conducted a quality assessment of the included studies using the Mixed Methods Appraisal Tool (MMAT) (Hong et al. 2018). The MMAT is suitable for critically assessing studies that have a qualitative, quantitative or mixed methods design. The MMAT consists of two general questions followed by five design‐specific questions. Results were categorised according to the level of design‐specific criteria met: high quality (4–5 criteria met), moderate quality (2–3 criteria met) or low quality (0–1 criteria met). Any discrepancies with results were discussed between Authors 1 and 2 until a consensus was reached. The MMAT has been shown to have strong reliability, with an intra‐class correlation of 0.8, suggesting agreement between individual reviewers (Pace et al. 2012). The full MMAT results for the studies included in the review are provided in Table S2.

3.6. Data Abstraction

Following the quality appraisal of the studies, the data abstraction process began. Data were systematically extracted by Author 1 (checked by Author 3). This initially consisted of tabulating the data from each study in the review in an Excel spreadsheet. This included a full description of the study design, sample, methods and results. Initial data extracted included the author, year, title, aim, study design, and number/characteristics of participants, including sociodemographic details, measures of experience used, results and study limitations. The spreadsheets progressed and changed with discussion between the review team members, particularly over semantic interpretation and homogeneity, until the best agreeable fit resulted. This discussion and progression were an integral part of ensuring the rigour of the abstraction process.

3.7. Synthesis of Findings

Eligible studies consisted of a mixture of design types, resulting in a narrative synthesis rather than a meta‐analytic approach as guided by the literature on conducting a qualitative meta‐analysis (Levitt 2018). Specifically, grouping of data, determining the heterogeneity of data, addressing the certainty of the evidence and presentation of data were guided by the Synthesis Without Meta‐analysis (SWiM) approach (Campbell et al. 2020). The completed SWiM checklist is given in Table S3.

Quantitative data reported were directly taken from the quantitative studies in the review, while the qualitative data and themes were adapted from data reported in the qualitative studies. Both sets of data were combined and reported in a narrative synthesis. Mind maps using Microsoft Inspiration software were also used as a visual thinking tool, enabling the investigation of similarities and differences between studies to be explored and discussed.

Teamwork was important throughout the review. All three authors had access to the extracted data, which was input into an Excel file. It was important at the data synthesis stage to collaborate within the team to broaden the understanding of the concepts and themes. This was particularly beneficial, where both qualitative and quantitative data were available. Teamwork consisted of regular meetings, discussions and communication to ensure that all aspects of the data were included. Difficulties in including, excluding and harmonising the data were also resolved through discussion.

4. Results

4.1. Overview

The initial search of the online databases resulted in 2931 studies. A total of 443 duplicates were removed, resulting in 2488 unique records remaining to be screened. The abstracts were then screened according to the inclusion and exclusion criteria, resulting in 77 eligible studies, which underwent full‐text screening. Fifty‐three studies were excluded for reasons of incomplete publication (poster/abstract only), incorrect timeframe. Incorrect study type, incorrect publication language. A final total of 24 studies remained to be included in the synthesis (see Figure 1).

FIGURE 1.

PRISMA flowchart (Page et al. 2021).

4.2. Study Characteristics

Table 2 displays an overview of the studies. Of the 24 studies in the review, all included participants with COPD, with two of these also including caregivers (Mousing and Sørensen 2021; Volpato et al. 2021). Across all studies, the total number of participants was 2240, consisting of 2214 IwCOPD and 26 caregivers.

TABLE 2.

Overview of the studies.

Author	Country	Design	Sample size	Age (M)	Measures	Results	MMAT a
Alsharif (2021)	Saudi Arabia	Mixed methods	N = 108 M = 67 F = 45	Not given	TUQ, MAUQ	mHealth is rated as slightly more effective than Telehealth, and interview results indicated that Telehealth is identified to be slightly more effective than mHealth in relation to parameters, including usefulness, ease of use and learnability, interface and interaction quality, reliability and satisfaction	5
Boyce et al. (2021)	USA	Mixed measures	N = 245	Not given	A series of online surveys	More than half of the respondents started using telemedicine in 2020. Respondents reporting a 2020 exacerbation indicated having a significantly higher avoidance of emergency healthcare since the pandemic and were also more likely to start using telemedicine	5
Ekdahl et al. (2021)	Sweden	Qualitative	N = 15 F = 15	75	Semi‐structured interviews containing questions such as ‘Please tell me about your everyday life? Could you tell me about your contact with healthcare professionals?’	Overarching theme of stabilising and ever‐present breathlessness by restoring strength; three sub‐themes: (1) managing a restricted everyday life; (2) being afraid of contracting everyday infections leading to suffocation and suffering; (3) importance of continuous help and support from significant others and digital media	5
Fumagalli et al. (2022)	Italy	Quantitative non‐randomised	N = 10	Not given	Telephone survey. Somatic, emotional and frailty symptoms	Age, gender, multiple symptoms at baseline and COPD were associated with symptom persistence I year after COVID	4
Hume et al. (2020)	UK	Quantitative non‐randomised	N = 10	Not given	GAD‐7, PHQ‐9	Depression and anxiety are prevalent among individuals with COPD and correlate with sociodemographic, quality‐of‐life and smoking measures	5
Imeri et al. (2021)	USA	Quantitative	N = 27	Not Given	Sociodemographic questions, PAM, MHLOC—Form B	Higher COVID‐19 related worry or fear managing chronic conditions associated with lower patient activation and health‐related locus of control (Spearman's value = 0.179; p = 0.002)	4
Kahnert et al. (2021)	Germany	Quantitative non‐randomised	N = 373 M = 218 F = 155	71.1	mMRC Dysnea, CAT, PHQ‐9	Compliance to hygiene, access to physicians slightly improved with time and patients obtained more information from physicians than from public media. Most felt the personal physician could not be substituted by remote consultation. Women and patients with more exacerbations avoided medical consultations. GOLD‐D patients were more amenable to teleconsultations	5
Kusk et al. (2021)	Denmark	Qualitative	N = 18 M = 8 F = 10	Not given	Semi‐structured telephone interviews	Four themes were identified as important for social distancing among COPD‐patients: ‘being at high‐risk and obtaining control’, ‘protecting one life while missing on another’, ‘social relationships and distancing’ and ‘looking into the future’. Experiences of living with COPD during COVID‐19 showed anxiety and fear of getting infected made patients control their surroundings through strict precautions. This led to a feeling of loneliness due to social distance and an altered life‐illness balance, as they protected one life while missing another	5
Lewis et al. (2021)	UK	Mixed methods	N = 14	Not given	GAD‐7, PHQ‐9, CRQ‐dyspnoea, CRQ‐fatigue, CRQ‐emotion, CRQ‐mastery	PR inclusion made possible with digital support. Education sessions are less effective online than face‐to‐face	5
Liang et al. (2020)	China	Quantitative	N = 153 M = 120 F = 23	71	mMRC Dysnea, CAT	29.4% of patients reported worsening of respiratory symptoms, but only 15.6% sought medical care in hospitals, while the remaining expressed concerns about cross‐infection in the hospital 55.5%; 28.8% had mild symptoms that were managed by themselves	5
McAuley et al. (2021)	UK	Quantitative non‐randomised	N = 160 M = 88 F = 72	67.3	‘Questions on changes in; Anxiety Inhaler adherence Physical activity Behaviour pre‐Lockdown behaviour during lockdown’	During lockdown, participants reported significantly increased anxiety, adherence to preventative inhalers and good adherence to shielding advice. A significant reduction in self‐reported physical activity and visitors was reported	4
McCreary et al. (2021)	USA	Quantitative	N = 395	Not given	The COPD and Coping with COVID Pandemic Survey The survey had seven domains	Survey questions are supplied. Results categorised into three main categories: (1) Short‐ and long‐term impact of anxiety; (2) re‐establishing trust in healthcare‐related information; (3) Short‐ and long‐term impact of delays and barriers to healthcare and health‐related prevention services	4
Mousing and Sørensen (2021)	Denmark	Qualitative	N = 12 COPD M = 4 F = 8 N = 1 caregiver F = 1	60	Semi‐structured interviews	Living with the threat of being infected with coronavirus affected everyday life for patients with COPD. Findings of ‘self‐isolation’, ‘nagging fear’, the forgotten’ and ‘the uncertain future’	5
Pedrozo‐Pupo and Campo‐Arias (2020)	South America	Quantitative	N = 144	70.8	Perceived stress related to COVID‐19, Brief Davidson Trauma Scale, (PGQ‐9), Athens Insomnia Scale	No significant differences between asthma and COPD in indicators of psychological stress for prevalence of high COVID‐19 perceived stress, post‐traumatic stress risk, depression risk and insomnia risk	4
Philip et al. (2020)	UK	Mixed methods	N = 9 M = 6 F = 3	72.1	PPI, GOLD, GAD‐7, PHQ‐9, CAT, mMRC Dysnea, ABC, CPPAC	Three themes regarding participation in Singing for Lung Health delivered face to face and online these were (1) perceived benefits; (2) digital barriers (online) and (3) digital facilitators (online). Pilot quantitative data suggested possible improvements in depression and balance confidence	5
Pleguezuelos et al. (2020)	Spain	Quantitative	N = 100 M = 76 F = 24	67.8	mMRC Dysnea, CAT, EQ‐5D, HADS	Lockdown had a low impact on COPD patients. Patients were satisfied with their medical telephone visits	4
Scarlata et al. (2021)	Italy	Quantitative non‐randomised	N = 40 M = 26 F = 18	77.7	MMSE, ADL, IADL, GDS	The isolation measures adopted during the pandemic triggered a deterioration of cognitive functions, independence and frailty levels in IwCOPD	5
Sun et al. (2021)	China	Quantitative non‐randomised	N = 113 M = 69 F = 44	Not given	mMRC Dysnea, CAT	Results showed a significant decrease in cough symptoms and energy status after the mindfulness‐based cognitive therapy. CAT and mMRS scores also decreased	4
Sauriasari et al. (2021)	Indonesia	Quantitative non‐randomised	N = 22	Not given	CAT	Before and after delivery of repeated education, the mean CAT score showed a decrease of two points. This indicated that the quality of life of the patients had significant improvement. However, 63.6% of patients still made mistakes in using the inhaler even though they had been educated	5
Sykes et al. (2021)	UK	Quantitative	N = 50	Not Given	Structured interview consisting of 20 questions relating to the experience of their COPD and its treatment during the pandemic	Exacerbations compared over 2018, 2019, and 2020 showed a decrease in the pandemic time. Level of COPD control, daily exercise, inhalation usage, depression and anxiety	4
Tasnim et al. (2021)	Bangladesh	Quantitative	N = 8	Not given	mMRC Dysnea, CAT	Levels of depression and anxiety were significantly higher in IwCOPD than in those without COPD during the pandemic	5
Volpato et al. (2021)	Italy	Qualitative	N = 83 COPD (M = 41, F = 42) N = 25 caregivers (M = 9, F = 16)	68.8	Semi‐structured questionnaire and narrative plot	Patients with COPD and their caregivers indicated terror at reopening society. COVID is described as a monster and home is described as clean and lonely. Telemedicine was perceived as beneficial during COVID	5
Wu et al. (2021)	UK	Quantitative	N = 19 M = 5 F = 14	Not given	NICE Standards	Patients reported that assessing COPD severity and starting new medications were being addressed through remote care. The study contains a couple of qualitative comments from open‐ended responses	4
Zhang et al. (2020)	China	Quantitative	N = 84 M = 72 F = 12	72.2	‘mMRC Dysnea, CAT, SAS, SDS, GOLD	Data on the fear of COVID is given. Medication adherence was good both pre‐ and during the pandemic. 88.8% of patients had no exacerbations during the two‐month study. Drug combination and doctor's supervision were favourable factors affecting medication adherence, while depression was unfavourable	4

Abbreviations: ABC, activity‐specific balance confidence; ADL, activities of daily living; CAT, COPD assessment test; CPPAC, clinical visit PROActive: Physical activity in COPD Tool; CRQ, chronic respiratory questionnaire; EQ‐5D, 5‐Dimension Euro Quality of Life; GAD‐7, Generalised anxiety disorder assessment; GDS, geriatric depression scale; GOLD, global initiative for chronic obstructive lung disease; HADs, hospital anxiety and depression scale; IADL, instrumental activities of daily living; MAUQ, Mobile health App Usability questionnaire; MHLOC, multidimensional health locus of control; mmRC Dysnea, modified medical research council dysnea scale; MMSE, mini mental state exam; PAM, patient activation measure; PHQ‐9, patient health questionnaire; PPI, public patient involvement; SAS, self‐rating anxiety scale; SDS, self‐rating depression scale; TUQ, telehealth usability questionnaire.

^a The MMAT score ranges from 0 to 5, with 0–1 = low quality, 2–3 = moderate quality and 4–5 = high quality (Pace et al. 2012), (Hong et al. 2018).

Eighteen of the twenty‐four studies focused exclusively on IwCOPD, while the remaining six also included patients with other chronic illnesses, such as asthma or COVID‐19 as an illness. In these studies, only the data from the participants with COPD were included in the analysis.

Sixteen studies indicated the gender of the participants. Of those, there were a greater number of individuals with COPD who were male (n = 815) than female (n = 494). For the caregiving sample, more participants were female (n = 17) than male (n = 9). Of the studies reporting age (n = 11), the mean age of IwCOPD ranged from 60 to 78 years (average mean = 70.3), with a mean age of 51 for caregivers.

4.3. Study Design and Quality Appraisal

Studies took place in 12 different countries: the UK (n = 6), China (n = 3), Italy (n = 3), United States (n = 3), Denmark (n = 2), Bangladesh (n = 1), Germany (n = 1), Indonesia (n = 1), Saudi Arabia (n = 1), South America (n = 1), Spain (n = 1) and Sweden (n = 1).

The study designs consisted of quantitative descriptive (n = 9), quantitative non‐randomised (n = 7), qualitative (n = 4) and mixed‐methods (n = 4). Using the MMAT, all studies were of moderate to high quality, with 50% of the studies scoring at an MMAT value of 4 (n = 12) and 50% scoring an MMAT value of 5 (n = 12). Public and Patient Involvement (PPI) was employed in one study. A summary showing the MMAT assessment for each study is provided in the Table S1. A SWiM checklist is also provided in the Table S2.

4.4. Measures Employed in the Studies

As shown in Table 2, the studies included in the review used a number of standard measures of experiences, which can broadly be grouped into four categories. First, a number of studies included COPD‐specific measures, such as the COPD Assessment Test (CAT) (n = 8), the Modified Medical Research Council (mmRC) Dyspnoea Scale (n = 6) and the Global Initiative for COPD (GOLD) (n = 3). A number of COPD‐specific questionnaires were also included, such as the COPD Coping with COVID Pandemic Survey, Nice Standards for the provision of specialty support for people with COPD, the Chronic Respiratory Questionnaire (CRQ) and the Clinical COPD Questionnaire (CCQ).

In addition, a number of studies employed measures of psychological well‐being such as the Patient Health Questionnaire Depression (PHQ‐9) (n = 5), the Generalised Anxiety Disorder Assessment (GAD‐7) (n = 3), and the Hospital Anxiety and Depression Scale (HADS) (n = 2). Other measures that were only used once included the Patient Activation Measure (PAM), the Multidimensional Health Locus of Control‐Form B (MHLOC—Form B), the Self‐Rating Anxiety Scale (SAS), the Self‐Rating Depression Scale (SDS), the Perceived Stress Related to COVID and the Brief Davidson Trauma Scale.

Thirdly, many studies included measures of QoL, including the 5‐Dimension European Quality of Life (EQ‐5D) scale, the Athens Insomnia Scale, the Activity Specific Balance Confidence (ABC) measure, the Folstein Mini Mental State Exam (MMSE), measures of Activities of Daily Living (ADL), Instrumental Activities of Daily Living (IADL) and the Geriatric multidimensional assessment (GDS).

Finally, two studies included measures of engagement with telehealth, specifically the Telehealth Usability Questionnaire (TUQ) and the mHealth App Usability Questionnaire (MAUQ).

4.5. Narrative Synthesis

Five main themes relating to the experience of IwCOPD and caregivers were identified in the narrative synthesis, with additional subthemes in certain categories. These were:

1. Impact on mental health of IwCOPD

2. Impact on physical health of IwCOPD

3. Changes to healthcare management for IwCOPD

4. Positive adaptations for IwCOPD

5. Impact on caregivers.

4.5.1. Impact on Mental Health of IwCOPD

The impact of the pandemic on mental health was reported in 15 research findings and can be categorised in two subthemes: (1) fear of COVID‐19 and the future, and (2) experiences of depression, anxiety and isolation.

Six studies identified fears relating to COVID‐19 and/or the future among IwCOPD (Boyce et al. 2021; Ekdahl et al. 2021; Imeri et al. 2021; Kusk et al. 2021; McCreary et al. 2021; Mousing and Sørensen 2021). For example, one study showed that IwCOPD in the United States had a significantly higher level of worry or fear related to COVID compared to the level of fear before the pandemic. They also feared managing their condition, resulting in lower levels of Patient Activation and a lower external health locus of control (HLoC) (Imeri et al. 2021). In another US‐based study, all of those interviewed expressed that the fear of getting COVID affected most of their thoughts (McCreary et al. 2021). Poor lung function is a symptom of COPD and this understanding by IwCOPD was transferred to fear that infection from COVID could be fatal. This was expressed by one participant as ‘If I get Corona, I'll die’. Even the hope that a vaccine may be a solution was not enough to reduce the fear, as it was feared that it would be too late and ‘when it comes along, I'll be dead’ (Mousing and Sørensen 2021). The majority (78%) of IwCOPD in another qualitative study in Denmark reiterated the fear of dying, for example: ‘If I get it you might as well order a box (coffin) for me’ (Kusk et al. 2021). Here, concerns and fears as society opened up after lockdowns were also expressed. For example, some participants feared that people would become too relaxed about restrictions and hygiene rules, while there was a perception that reducing restrictions was prioritised for financial reasons rather than for health reasons. Similarly, a narrative Italian study (Volpato et al. 2021) found that 25% of IwCOPD reported emotions of terror and fear. One participant noted that ‘My body is gripped with fear’, while COVID was referred to as a ‘monster’. Fear of the future was also expressed: ‘To hear the news that cases are increasing more and more, the concern and fear remain’. IwCOPD expressed experiences of being consumed with fear and fear for the future, for example: ‘If I get Corona, put me down with morphine. Finish me off so that I don't have to feel these feelings because I've felt them a few times before’ (Ekdahl et al. 2021). Coping measures to reduce fear included refusing home help, ensuring social distancing and enduring isolation, while the support of significant others was vital (Ekdahl et al. 2021).

Beyond fear, nine studies found additional mental health impacts of the pandemic on IwCOPD (Ekdahl et al. 2021; Hume et al. 2020; McAuley et al. 2021; Mousing and Sørensen 2021; Pedrozo‐Pupo and Campo‐Arias 2020; Scarlata et al. 2021; Sykes et al. 2021; Tasnim et al. 2021; Zhang et al. 2020).

For instance, one South American study reported how IwCOPD experienced a depression risk of 25.9% during the pandemic (Pedrozo‐Pupo and Campo‐Arias 2020), while another study found scores on the General Depression Scale (GDS) to worsen during the physical distancing stage of the pandemic. The results also indicated that loneliness and not just physical isolation contributed to psycho‐cognitive distress in elderly IwCOPD (Scarlata et al. 2021).

Another study found that 48% of IwCOPD experienced a decline in their mental health as a result of social distancing, shielding and restriction during lockdown periods (Sykes et al. 2021), while a further study using the Patient Health Questionnaire (PHQ‐9) and the Generalised Anxiety Disorder Scale (GAD‐9) found that IwCOPD had increased levels of anxiety and depression during the pandemic phase of November 2020–January 2021 compared to those who did not have COPD (Tasnim et al. 2021). As much as 31% of IwCOPD were found to have COPD with depression (Zhang et al. 2020) during the pandemic phase. IwCOPD made poignant expressions in relation to isolation such as ‘You can end up being so afraid of being in contact with other people that you die of loneliness’ (Mousing and Sørensen 2021) and ‘…you can easily get lonely. It's like being a hermit, I'm a hermit. And that's not easy when you really enjoy the company of lots of other people’ (Mousing and Sørensen 2021). However, another study found that online media was helpful in combating isolation (Ekdahl et al. 2021). A UK study (McAuley et al. 2021) found that increases in exacerbations during the first 6 weeks of the pandemic (March–April 2020) were associated with increased anxiety. Another study indicated that shielding caused patients to feel increasingly limited when conducting daily physical activities, accompanied by heightened feelings of depression and concerns about their breathing (Hume et al. 2020).

4.5.2. Impact on Physical Health of IwCOPD

A total of nine research findings in the review documented the impact that the pandemic had on the physical health of IwCOPD. This impact can be categorised into two subthemes: (1) changes in the level of exacerbations and (2) changes in the levels of exercise.

In relation to the first subtheme, five studies (Kahnert et al. 2021; Liang et al. 2020; McAuley et al. 2021; Pleguezuelos et al. 2020; Sykes et al. 2021) found that exacerbation levels changed during the pandemic. For example, one UK study (Sykes et al. 2021) found that the level of admission to hospital due to exacerbation decreased during the first wave of the pandemic (March–June 2020). However, 32% of IwCOPD interviewed reported a decline in their health. Conflicting results from another UK study (McAuley et al. 2021) found an increase in exacerbations during the first 6 weeks of the pandemic (March–April 2020). A German study (Kahnert et al. 2021) also found an increase in reported exacerbation levels, while a study in Spain (Pleguezuelos et al. 2020) found no difference in exacerbation levels during the pandemic.

Self‐management of exacerbations was recoded in two studies, with one study indicating that 25% (n = 11) of those experiencing an exacerbation declined to seek medical attention on at least one occasion (Sykes et al. 2021). Another reported that while 29% (45/143) of IwCOPD reported a worsening of respiratory symptoms, only 15.6% of those (7/45) sought medical care in hospitals (Liang et al. 2020). In some cases, varying strengths of medication were administered to combat exacerbations and hence reduce the number of hospital admissions, which was a deep concern during the pandemic (Kahnert et al. 2021).

The second sub‐theme, changes in levels of exercise of IwCOPD, was reported by four studies (n = 485) (Hume et al. 2020; Kahnert et al. 2021; McAuley et al. 2021; Sykes et al. 2021). All reported a decline in activity levels of IwCOPD due to pandemic restrictions. For example, in one UK‐based study, 46% of IwCOPD experienced a decrease in the level of exercise undertaken, while another (Sykes et al. 2021) UK study evaluated the impact of COVID‐19 shielding on physical activity and quality of life in IwCOPD. Having completed an 8‐week Pulmonary Rehabilitation (PR) course from January–March 2020, IwCOPD also underwent tests on three occasions: Pre‐PR, post‐PR and 3 months later during shielding/lockdown time (April—July 2020; Hume et al. 2020). Clinical test results showed a statistically significant decrease in the number of steps per day during shielding. This also led to a perceived difficulty in conducting physical activity. Data indicated that shielding caused patients to feel increasingly limited when conducting daily physical activities. It is important to note that this cohort had initially undergone PR so therefore, it is likely that the effects are worse for those IwCOPD who underwent shielding but did not undergo PR (Hume et al. 2020). Similarly, a study in Germany, with data collected over three consecutive assessments, found lower physical capacity, which was influenced by restrictions on free movement due to the pandemic and also due to a reduction in physiotherapy (Kahnert et al. 2021). 40% of participants in a UK study reported a reduced activity level when comparing the pre‐lockdown period with the lockdown timeframe (McAuley et al. 2021). There was a slight increase in home exercise programmes with a rise from 31% to 36% when comparing the pre‐lockdown period with the lockdown timeframe (McAuley et al. 2021).

4.5.3. Changes to Healthcare Management

Ten research findings reported changes to healthcare management. The two subthemes related to changes to healthcare management were (1) the benefits and drawbacks of telemedicine and (2) access difficulties to healthcare and medication. Telemedicine is virtual care, whereby healthcare is provided by phone, mobile app, or online platforms. Telemedicine played an important part in healthcare management during the pandemic, with six studies making reference to this (Alsharif 2021; Boyce et al. 2021; Kahnert et al. 2021; Lewis et al. 2021; Sun et al. 2021; Wu et al. 2021). One study, for example, found that 64% of IwCOPD commenced using telemedicine at the start of the pandemic, with those who experienced an exacerbation more likely to use it (Boyce et al. 2021). Both negative and positive experiences were expressed regarding telemedicine. Online PR was perceived as a success by many, for example: ‘It is terrific and designed to do it at your own pace. It also has breathing techniques I'd never heard of to help COPD breathing’ (Boyce et al. 2021). Similarly, a UK 6 week online PR programme had positive impacts as participants significantly improved in outcome measures of exercise capacity, anxiety, depression, and respiratory‐related quality of life. IwCOPD positively expressed the effectiveness of the programme: ‘It encouraged me to go walking again’ and ‘I do the housework now and garden. Huge difference’. (Lewis et al. 2021). In another UK study, 58% of IwCOPD found telemedicine helpful (Wu et al. 2021), for example: ‘She was very helpful in explaining fully the medication I am on and the correct way of taking it’ (Wu et al. 2021). However, a study in Saudi Arabia evaluating the use of electronic health (eHealth) within the COPD community found a preference for mHealth (managing health with mobile devices) rather than Telehealth (Alsharif 2021). Online interventions for IwCOPD may be beneficial in other contexts too. For example, a study in China on the effects of an online mindfulness‐based cognitive therapy for patients with COPD during the pandemic showed a statistically significant result regarding cough symptoms and energy status (Sun et al. 2021).

However, in spite of the benefits of telemedicine and eHealth, not all were in favour of this. For example, a participant in one study noted that ‘It is extremely hard to get in touch with them now, even with calling and e‐mailing. My main doctor's office has completely closed its doors, medication updates are done by phone if/when they call’ (Boyce et al. 2021). Some IwCOPD expressed that telemedicine was offered as the only option to PR and that they had ‘no choice’ in that they either participated online in PR or received nothing at all (Lewis et al. 2021). A German study found that 74% of IwCOPD were not in favour of telemedicine and did not consider it suitable; however, those with high symptom burden, especially women, were more in favour of it (Kahnert et al. 2021). Concerns relating to telemedicine were expressed in another study: ‘I doubt you could make remote care as good as face‐to‐face meeting’ (Wu et al. 2021), with support from healthcare professionals perceived as being insufficient and lacking continuity of care and knowledge of care of COPD.

In relation to the second subtheme, four studies (Kahnert et al. 2021; Liang et al. 2020; Mousing and Sørensen 2021; Zhang et al. 2020) reported difficulties accessing healthcare and medication in the early stages of the pandemic. Two studies found that IwCOPD patients were experiencing delayed, cancelled, or modified medical appointments. Some expressed feeling forgotten: ‘The doctor wouldn't see me. I just got a text message saying that my appointment was cancelled’ (Mousing and Sørensen 2021) and ‘I usually get an annual check‐up at the doctors, but this year I haven't had one’ (Mousing and Sørensen 2021). Recurring surveys in one study, however, indicated that the issue of cancelling scheduled visits decreased as the pandemic progressed (Kahnert et al. 2021). IwCOPD did not attend to get the prescription for medication (Zhang et al. 2020), and 6.5% reported reducing or stopping medication due to lack of supply (Liang et al. 2020).

4.5.4. Positive Adaptations

In an attempt to balance health needs with available resources during the pandemic, IwCOPD managed their condition with a combination of positive adaptations, which included (1) self‐preservation and self‐care and (2) online activity.

Self‐preservation and self‐care were addressed in nine studies (Ekdahl et al. 2021; Kahnert et al. 2021; Kusk et al. 2021; Liang et al. 2020; McAuley et al. 2021; Pleguezuelos et al. 2020; Sykes et al. 2021; Volpato et al. 2021; Zhang et al. 2020) included issues of managing medication, adhering to pandemic restrictions, protecting one's health, coping, positive thinking, adjusting expectations and coping.

Four studies referred to the experiences of medication use and adherence to medication (Liang et al. 2020; McAuley et al. 2021; Sykes et al. 2021; Zhang et al. 2020), with results indicating that IwCOPD managed COPD symptoms with prescribed increases in medication. The levels of increase in the United Kingdom were between 48% (Sykes et al. 2021) to 26% (McAuley et al. 2021), and 28% of IwCOPD self‐managed medication to control symptoms of COPD (Liang et al. 2020) during the pandemic. Medication adherence was shown to be associated with medication type, the level of the doctor's supervision, the level and history of exacerbation risk and the depression level of the IwCOPD (Zhang et al. 2020).

Three studies referred to general compliance regarding pandemic restrictions within their area (Kahnert et al. 2021; Pleguezuelos et al. 2020; Volpato et al. 2021). High levels of compliance within IwCOPD were reported in Germany in restriction measures and hygiene measures (wearing masks and hand hygiene; Kahnert et al. 2021), while 64% in Spain (Pleguezuelos et al. 2020) and 61% in Italy reported full compliance with the lockdown measures (Volpato et al. 2021). Two qualitative studies (Kusk et al. 2021; Volpato et al. 2021) addressed how protecting one's health and staying safe were a priority for IwCOPD. They tried to control their surroundings in order to create a safe environment (Kusk et al. 2021). Coping was an important skill, with coping strategies used by 45% of IwCOPD in Italy. Thinking of others, positive thinking, being thankful, self‐care, adjusting expectations, spirituality, and the experience of storytelling were some of the positive coping experiences expressed. An example of thinking of others as a coping method included: ‘I had to stay calm and reason because I have three grandchildren and an only daughter living in the USA, and I want to see them again’ (Volpato et al. 2021). Positive thinking and being thankful included: ‘…I am fortunate to be able to live with family and be so well cared for …’ Self‐care as a coping mechanism was expressed as ‘I kept myself always trained on the treadmill every day…I never gave up’. Adjusting expectations and hope were expressed as ‘to continue to be quite well in the hope that more and more effective medications against COPD will be found’ (Volpato et al. 2021). Adjusting expectations was required as unscheduled activities could cause severe breathlessness. IwCOPD managed this restriction with basic activities of daily living as ‘Then I just sit and wait for my breath to be stable until I can go on and get washed and dressed’ (Ekdahl et al. 2021). Spirituality was expressed as ‘I also began to pray’ (Volpato et al. 2021).

Two studies referenced online activity as a form of support (Ekdahl et al. 2021; Philip et al. 2020). Online media was seen as a positive support with IwCOPD finding it helpful to discuss experiences and exchange knowledge (Ekdahl et al. 2021). While face‐to‐face support groups were seen as preferable for many participants, the online version option was useful as it offered the ability to attend without any travel or transport issues or risks of infection. For example, initial piloting of online singing for lung health indicated that IwCOPD benefited with a reduction in depression and improved balance confidence. Improvement in mood and enjoyment of the social aspect were reported (Philip et al. 2020). Technical and digital difficulties could be a barrier in some cases.

4.5.5. Impact on Caregivers

Only two studies included measures of caregiver experience (Volpato et al. 2021; n = 24) and (Mousing and Sørensen 2021; n = 1). Terror, fear, and apprehension of COVID‐19 were the emotions expressed by all of the caregivers in one study (Volpato et al. 2021). The home was expressed as being ‘full of fear’, and caregiving was ‘living in symbiosis’ with IwCOPD. Caregivers expressed difficulty accessing medical care and PPI. Coping methods used, were having positive thoughts and writing.

A summary of the themes addressed is given in the Tables [Link], [Link].

5. Discussion

This systematic review aimed to explore the experiences of both IwCOPD and their informal caregivers regarding daily life, health, healthcare management and adaptations taken during the pandemic period. Findings highlight the varying impact that the Covid‐19 pandemic had on IwCOPD and, to a lesser extent, on caregivers. Notably, findings suggest that the pandemic had a considerable impact on the mental health, as well as the physical health, of many IwCOPD, but that changes in healthcare management led to benefits for some.

A key finding from this review is the impact that the pandemic had on mental health outcomes such as depression, anxiety and isolation. While it has been well established that COPD is often comorbid with depression (Yohannes 2021), our findings suggest that mental health difficulties were exacerbated during the pandemic period. For example, while studies have shown that IwCOPD can have concerns regarding death and dying (Gardiner et al. 2009; Giacomini et al. 2012), the review findings suggest that this fear may have been compounded during the pandemic, with fear of contracting COVID‐19 cited as a concern among many IwCOPD. While less research was conducted in relation to family caregivers, another recent study found that they experienced fear over the virus (Bailey et al. 2022). Our findings also show how the impacts of the pandemic on mental health extended beyond fears of contracting COVID, a finding that is also consistent with other recent studies and reviews in other populations. For example, a systematic review exploring older adults' experiences during the pandemic indicated that participants' mental health and well‐being were negatively impacted, corresponding to increases in anxiety, depression and loneliness (Derrer‐Merk et al. 2023). However, not all studies reached this conclusion, with one recent longitudinal study in the USA finding that anxiety and depression remained stable among IwCOPD during the pandemic (Zhang et al. 2022). It is notable, however, that the cohort examined in this study was very well integrated into a healthcare network, suggesting that good healthcare support can mitigate mental health risks in those affected by COPD.

Beyond direct impacts on mental health outcomes such as anxiety and depression, review findings suggest that the pandemic forced social disengagement on IwCOPD, resulting in isolation for many. This is consistent with research conducted on older adults during the pandemic, which indicated that being separated from loved ones predicted an increase in the level of anxiety and stress experienced (Tyler et al. 2021). In the case of COPD, managing psychosocial distress is essential to reduce the risk of exacerbation and hence improve quality of life (Bellocq et al. 2019), while social disengagement is associated with an increased risk of respiratory disease admission to hospital (Bu et al. 2020). Loneliness and reduced social interaction have previously been shown to be associated with reduced autonomy and accelerated mental decline (Gerst‐Emerson and Jayawardhana 2015), suggesting the importance of developing interventions to tackle this in the context of COPD. Also, as one study in the review found loneliness in older IwCOPD even when a caregiver was present (Scarlata et al. 2021), it is clear that physical isolation is not the only factor leading to psychosocial distress. On a more positive note, while our review found that patients experienced feelings of isolation, vulnerability and anxiety during the pandemic, recent studies have indicated that this was somewhat alleviated with virtual social interaction (Madawala et al. 2023; Mejdahl et al. 2023; Swain et al. 2023).

Interestingly, this review found conflicting results regarding changes in physical health for IwCOPD during the pandemic. For example, some studies showed an increase in the levels of exacerbations during this time (Kahnert et al. 2021; McAuley et al. 2021; Pleguezuelos et al. 2020), while others indicated decreases (Sykes et al. 2021; Tan et al. 2021). These conflicting results may be due to different lockdown confinement rules in different countries and/or the different timelines for data collection. Results indicated that many IwCOPD managed exacerbation symptoms at home to some level, instead of seeking medical intervention. This may have resulted in lower levels of exacerbations recorded than existed, as levels of exacerbations are typically measured at hospital admissions. Another recent review found that greater self‐care and awareness resulted in a reduction in exacerbations and hospitalisation of IwCOPD, which had a positive effect on their health (Swain et al. 2023). Other recent studies similarly found a reduction in exacerbations during the pandemic, most likely due to increased infection measures (Ahn and Park 2024; Nishioki et al. 2024). However, research in Canada indicated that while hospitalisation levels for COPD exacerbations reduced, outpatient encounters increased (Lam et al. 2024). This is consistent with review findings highlighting mixed experiences regarding physical health. Separately, while fewer studies in the review focused on the role of caregivers in managing exacerbations, it is clear that caregivers had an important role in assisting their care recipients in this respect and were instrumental in safeguarding them against infection with the COVID‐19 disease. This had a positive impact on the health of the people with a chronic illness (De Maria et al. 2022).

Overall, while conflicting results for levels of exacerbation were reported in the review, there is evidence to suggest that patients self‐managed their health to avoid hospitalisation and that this self‐management, coupled with changes in prescriptive medications, affected hospitalisation levels for COPD patients during the pandemic (Liang et al. 2020). This was supported by the goals of a patient‐centered approach, including having confidence, ability, and skills to manage health (Hibbard et al. 2004). However, a potential concern is the finding that overall physical activity decreased for IwCOPD during the pandemic, which had likely resultant impacts on physical health. Despite this, small increases in home activity were reported in one study (McAuley et al. 2021), which may indicate that supporting home exercise programmes for IwCOPD may have positive outcomes in the future.

Healthcare management is vital in the managing chronic conditions, including COPD. This involves both self‐management (Lorig et al. 1999) with medical professional advice and healthcare programmes. Aside from those with COPD, there is evidence to suggest that individuals with other chronic illnesses experienced difficulty in accessing care during the pandemic. These participants also perceived that the pandemic negatively impacted their confidence in accessing care (Ryder et al. 2023). However, telemedicine has been shown to improve the quality of life and reduce rates of hospitalisation (Liu et al. 2020), with a number of studies in the review suggesting benefits of this technology. Telehealth solutions for the management of COPD have been shown to be effective in adherence to treatment, health status and quality of life (Alghamdi et al. 2020), while more generally, the use of telehealth in self‐management in individuals with chronic illnesses indicates that those using it are motivated in managing their own lifestyles. The positive impact of close monitoring and increased communication is also reassuring (Creber et al. 2023). However, in spite of the potential benefits, the review findings suggest that relying on telemedicine is not always an option for IwCOPD, especially those of an older age (generally 65+) group. This is consistent with recent research suggesting that some older adults experience difficulty with using and accessing the required technology (Creber et al. 2023). Ideally, telemedicine should be offered as a choice, as it is possible that those requiring support may not receive any if they are unable to participate. The use of innovative technology has recently been identified as an area that requires improvement with IwCOPD (Gruiskens et al. 2024). There is a danger of creating more disparities in the community due to a lack of hardware, internet access and computer skills. During the pandemic, however, IwCOPD had ‘no choice’ in that they either participated online in PR or received nothing at all (Lewis et al. 2021). Finding suggest that face‐to‐face consultations are still required and needed by IwCOPD as the cohort may not all have access to online facilities and skills. More recently, IwCOPD recently expressed a preference for a blended form of virtual pulmonary rehabilitation (Verweel et al. 2024).

In spite of the above concerns, the review found that telemedicine was beneficial for some, particularly for those with high symptom burden, while pulmonary rehabilitation online was completed successfully. The findings of our review are consistent with more recent research in the area. For example, one study found that IwCOPD experienced a negative impact on the quality of available care during the pandemic; however, new technologies such as telehealth were well received in some cases, helping to increase access to healthcare (Madawala et al. 2023).

6. Limitations

There are a number of limitations with this review, including limitations with the individual studies and the method of synthesis used. First, regarding the limitations of the included studies, while there were a number of studies focusing on IwCOPD the small number of caregiver studies limits the generalisability of findings in this respect. Furthermore, some other studies with IwCOPD identified from the search could not be included as their data were not segregated from other individuals. Another notable limitation is the fact that the studies included in the review came from just 12 different countries, with the focus only on English‐language studies, meaning that many countries were underrepresented. Given the limited number of countries focused on this review, further research needs to be carried out in countries that were not represented, particularly in low and middle‐income countries, which may lack sufficient support for IwCOPD. Also, while the MMAT scores suggest that the studies included were generally of reasonably good quality, some of the included studies did not identify the gender (n = 10) and age (n = 13) of the participants, resulting in gaps in the sociodemographic data reported. Also, a notable limitation is the fact that many of the studies were cross‐sectional in nature, meaning that the impacts of the pandemic on experiences over time could not always be assessed. In the small number of questions where the answer is unsure, a lower MMAT score than the true score may result.

Regarding the limitations of the method, the search strategy used may also have acted as a limitation. Given that the main theme was ‘experiences’, which can be a difficult concept to define, it is possible that the search terms may have excluded experiences that did not come under the umbrella of the search terms. However, extensive scoping searches were completed prior to the final syntax being agreed upon and were overseen by another reviewer, thus resulting in a comprehensive logic of the search syntax. In addition, the method of narrative synthesis may have limited the strength of conclusions drawn from the review. Given the heterogeneity of measures and outcomes reported, a meta‐analysis was not possible.

7. Implications

The findings from this review have a number of implications. Importantly, findings have highlighted the need to provide better support for IwCOPD, especially those who are particularly vulnerable. For example, while the benefits of technology and telemedicine are clearly apparent, findings suggest that older IwCOPD and caregivers may need additional support in using such technology, with a need for face‐to‐face and personalised care remaining for many. However, findings suggest that the introduction of telehealth in the early stages of COPD diagnosis or as a component of healthcare could be beneficial. The review also highlights the fact that there is a clear need to provide IwCOPD with necessary support in relation to their mental (as well as physical) health, with interventions targeted at combating social isolation in this cohort holding potential value.

Future research needs to be undertaken to continue to explore these issues and to evaluate the need for support of IwCOPD in the event of another pandemic or associated public health restrictions. Implications for the provision of appropriate healthcare and maintenance of psychological well‐being for IwCOPD should be considered.

8. Conclusion

This review has provided an interesting insight into the experiences of IwCOPD during the pandemic; however, it is clear that more research is needed into the impact that COVID‐19 had on caregivers. These findings have implications for those supporting IwCOPD. In particular, there appears to be a need for programmes that promote exercise, combat loneliness, and reduce anxiety and depression in this group. While changes to healthcare during the pandemic suggest that there are benefits to telemedicine in the care of IwCOPD, there is a clear need to identify additional supports for the patient and caregiver cohort.

Author Contributions

J.D.‐K. and R.M.: Study design, data synthesis. J.D.‐K. and J.H.: Screening and quality assessment. J.D.‐K.: Data extraction and manuscript drafting. R.M., Supervision. Neither this manuscript nor parts of it have been submitted elsewhere for publication.

Funding

The authors have nothing to report.

Ethics Statement

Ethical approval was not required as the systematic review was performed on published data.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Table S1: Search Syntax used in each data base.

Table S2: Quality appraisal results of individual studies using with Mixed Methods Appraisal Tool (MMAT).

Table S3: Synthesis Without Meta‐analysis (SWiM) reporting guidelines checklist.

Deane‐King, J. , Howell J., and Maguire R.. 2026. “Experiences of Individuals With Chronic Obstructive Pulmonary Disease and Their Caregivers During the Pandemic: A Systematic Review.” Nursing Open 13, no. 2: e70462. 10.1002/nop2.70462.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.