Patient journeys mapping in health management for older patients with chronic obstructive pulmonary disease: a qualitative descriptive study

Abstract

Background

Management of chronic obstructive pulmonary disease (COPD) in older adults remains suboptimal, often due to a fragmented, acute-care-focused approach that fails to address the comprehensive needs of patients across the care continuum. A thorough understanding of the patient journey is essential to identify systemic gaps and potential intervention points.

Aim

This study aims to systematically map the complete cycle of the COPD patient journey in older adults, elucidating their multidimensional needs, challenges, and critical touchpoints throughout the stages of screening, diagnosis, inpatient care, and home-based rehabilitation.

Design

A qualitative descriptive study employing patient journey mapping.

Methods

A qualitative approach was used, involving in-depth, semi-structured interviews with a purposive sample of older COPD patients. Data collection continued until thematic saturation was achieved. Data were analysed using Braun and Clarke’s thematic analysis technique. Patient journey mapping synthesized individual narratives into a consolidated visual representation, identifying key stages, touchpoints, and barriers within the patient experience.

Results

Analysis revealed themes organized across three dimensions: health management tasks, emotional experiences, and pain points. Key findings included challenges in early symptom recognition and diagnosis, ongoing burdens associated with symptom management, barriers to engaging in pulmonary rehabilitation, inadequate social and professional support, nutritional knowledge gaps, and pervasive concerns regarding physical activity. These themes contributed to a comprehensive patient journey map that highlighted the dynamic and interdependent needs throughout the various phases of COPD management.

Conclusion

Patient journey mapping illustrates that the COPD care pathway constitutes a prolonged process, marked by critical vulnerabilities during diagnosis and care transitions. These findings highlight the necessity of transitioning from episodic care to continuous support frameworks that integrate digital health solutions, self-management education, and community-based services.

Impact

This study offers empirical evidence to inform the development of targeted interventions and optimize resource allocation, ultimately aiming to improve self-management outcomes, reduce complications, and enhance the quality of life for older adults with COPD.

Reporting method

This study adhered to the COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines to ensure methodological transparency and reproducibility.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s12889-026-28180-9.

Introduction

Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality globally, particularly affecting older adults [1, 2]. Characterized by persistent airflow limitation and a chronic, relapsing course, COPD is associated with frequent exacerbations, significant disability, and increased healthcare utilization [3, 4]. The Global Burden of Disease study ranks COPD as the third leading cause of death worldwide, impacting hundreds of millions, with a disproportionately high burden in low- and middle-income countries [5]. Projections indicate that the number of adults aged ≥ 40 years living with COPD could reach approximately 592 million by 2050, representing an increase of around 23% from current estimates [6]. In China, the prevalence of COPD among individuals aged ≥ 40 years is approximately 13.7%, rising to 27.4% among those aged ≥ 60 years, translating to an estimated 300 million affected individuals [7]. Annual deaths attributable to COPD in China account for a significant proportion of global COPD mortality, highlighting the disease as a major public health challenge for the aging population [8].

Older adults with COPD face substantial health management challenges, exacerbated by age-related physiological decline and multiple comorbidities [9, 10]. Effective COPD management necessitates sustained multidisciplinary efforts, encompassing disease prevention, early detection and diagnosis, long-term treatment, management of acute exacerbations, rehabilitation, and maintenance of health-related quality of life [11–14]. Patient journeys traverse multiple care settings, including the home, primary and community care, and various healthcare institutions, involving numerous medical and non-medical touchpoints [15–17].

Despite extensive clinical guidelines and established multidisciplinary care models, significant barriers persist in delivering truly comprehensive and patient-centered care throughout the COPD management continuum [18–20]. These challenges may hinder timely interventions, optimal resource allocation, and sustained engagement across care settings, potentially compromising patient outcomes [21–24].

Patient Journey Mapping (PJM) provides a structured methodology for capturing the temporal sequence of patient activities, interactions, emotional experiences, unmet needs, and barriers throughout the entire care continuum [25]. By integrating discrete care events into a coherent timeline, PJM facilitates the identification of critical intervention points and the design of stage-specific, multi-component strategies. It enhances coordination among multidisciplinary teams, including clinicians, rehabilitation specialists, nutritionists, social workers, and peer support providers [26, 27]. In the context of COPD, particularly among older adults, PJM effectively elucidates how age-related functional decline, health literacy, comorbidity burden, and socio-environmental factors—such as transportation limitations, inadequate social support, and stigma—affect patient engagement in screening, diagnosis, exacerbation management, rehabilitation, and long-term self-management [16]. The utility of PJM in health services research and quality improvement has been demonstrated in chronic disease and oncology settings, revealing latent needs and pathway bottlenecks that inform patient-centered service redesign [28–30].

However, no qualitative study has applied PJM specifically to map the full care trajectory of older patients with COPD, from initial symptom recognition and diagnosis through exacerbation management, rehabilitation, and long-term self-management. Existing qualitative research in COPD has predominantly focused on discrete segments of the patient experience, such as self-management perspectives, palliative care needs, or telehealth experiences, rather than offering an integrated, temporally organized account of the complete journey [31–33]. Moreover, studies utilizing PJM in COPD have not specifically addressed the unique convergence of age-related vulnerabilities, including health literacy limitations, mobility restrictions, social isolation, and polypharmacy, which influence how older patients navigate and experience the healthcare system. This gap is significant; without a holistic, stage-by-stage understanding of where older COPD patients encounter barriers and unmet needs, interventions remain fragmented and may fail to target critical junctures in care continuity.

This study, therefore, aims to develop a comprehensive patient journey map that characterizes the full cycle of health management for older individuals with COPD. Building on in-depth qualitative data and iterative map synthesis, the study seeks to: (1) map key stages and touchpoints along the COPD care continuum, including screening, diagnosis, exacerbation management, rehabilitation, and follow-up; (2) integrate patient-reported experiences such as emotional trajectories, self-management behaviors, and informational needs across these stages; (3) identify barriers at both patient and system levels that hinder access, adherence, and care continuity, emphasizing stage-specific challenges revealed by journey maps; and (4) propose strategies to enhance service delivery and resource allocation.

Methods

Design

A qualitative approach was used to visually represent the health management experiences of older adults with COPD. This methodology aligns with established strategies for exploring patient experiences and identifying systemic barriers in chronic care [23]. The study adhered to the COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines [34].

Theoretical framework

The research was grounded in an exploratory-descriptive qualitative (EDQ) framework, which integrates both exploratory and descriptive methodologies to investigate under-researched phenomena and provide an in-depth understanding of participants’ experiences [35]. This framework was particularly suited for capturing the complex journeys of patients with chronic conditions. Semi-structured interviews were conducted to explore participants’ perceptions of their health management trajectories.

Data analysis employed two complementary qualitative methods, each serving distinct analytical purposes within the EDQ framework. First, hybrid thematic analysis, combinning deductive and inductive coding within a coding reliability framework [36], identified experiential patterns, emotional responses, barriers, and facilitators across participants’ narratives. This addressed the interpretive aim of understanding how older COPD patients experience and perceive their care journeys. Second,, directed qualitative content analysis translated thematic findings into discrete journey components, such as touchpoints, care events, health management needs, and service interactions at each stage of care [37]. This addressed the descriptive-structural aim of specifying the constituent nodes of the patient journey map. This dual-method approach is methodologically sound, as thematic analysis and content analysis, though procedurally similar, serve different analytical purposes: the former uncovers latent meaning patterns, while the latter systematically categorizes manifest content.

PJM was utilized to chronologically illustrate significant events, challenges, and transitions throughout the patient journey, synthesizing outputs from both phases of analysis. The development process followed five key stages: (1) establishing a preliminary thematic framework based on a review of relevant literature and participant observation; (2) conducting semi-structured, in-depth interviews with patients; (3) using hybrid thematic analysis to identify themes and sub-themes reflecting patient experiences at each care stage (Phase 1 analysis); (4) applying directed qualitative content analysis to refine and classify health management needs, touch-points, and pain points into corresponding journey nodes (Phase 2 analysis); and (5) validating and finalizing the draft map through stakeholder collaboration.

Study setting and recruitment

This study was conducted in the Respiratory Department of a tertiary general hospital in Puyang, Henan Province, China, with participant recruitment spanning November 2024 to January 2025. Purposive sampling with a maximum-variation strategy was employed ensure a diverse sample based on demographic and clinical characteristics, including age, sex, COPD severity, recent exacerbation or hospitalizations, comorbidities, living arrangements, and access to community services [38].

Eligible inpatients were identified by the research team or treating clinical staff and invited to participate. All participants were provided a Patient Information Sheet and an Informed Consent Form, with sufficient time to consider their involvement and consult with family members. To capture experiences during and post-hospitalization, in-depth interviews were scheduled approximately one week after discharge and conducted at either the participants’ homes or a designated follow-up clinic, depending on individual preferences and situational feasibility.

Inclusion and exclusion criteria

Participants met the following inclusion criteria: (1) physician-diagnosed COPD per the 2024 Global Initiative for Chronic Obstructive Lung Disease (GOLD) criteria [39]; (2) aged ≥ 60 years; (3) fluent in Mandarin; and (4) provided written informed consent.

Exclusion criteria included: (1) terminal illness with life expectancy ≤ 6 weeks; or (2) psychiatric or neurocognitive disorders impairing memory or communication.

Data collection

Semi-structured interviews were conducted one week post-discharge by two female researchers trained in qualitative methods. Each interview lasted 45–60 min, was audio-recorded with participant consent, and took place either at participants’ homes or follow-up clinic based on their preference. The researchers held master’s degrees and were independent of participants’ clinical care to ensure objectivity.

The interview guide, specifically developed for this study, is included as, Supplementary Material File S1. To enhance data accuracy, participant responses were validated during interviews via iterative summaries and paraphrasing (member checking) [40].

Data collection continued until thematic saturation, defined as the absence of new themes in three consecutive interviews. This pragmatic criterion, although subject to ongoing academic discussion by scholars such as Braun and Clarke [41], was adopted to ensure data sufficiency and comprehensive thematic development. Saturation was assessed during concurrent data collection and analysis, with two independent researchers collaboratively evaluating the emergence of new codes, themes, or dimensions. Recruitment ended once consensus was reached that no new insights or significant themes emerged [42–44].

Data analysis

Audio recordings were transcribed verbatim by a professional service and verified for accuracy by the research team. Transcripts were managed and analyzed using NVivo 12.0 software.

Phase 1: hybrid thematic analysis

A hybrid thematic analysis approach, integrating deductive and inductive coding, following the six-phase process described by Braun and Clarke [45], including familiarization, coding, theme searching, reviewing, defining and naming themes, and report production. This method allowed mapping patient experiences across predefined COPD care stages (deductive framework) while remaining open to emergent themes (inductive flexibility) [36]. Two researchers independently coded the data, resolving discrepancies through discussion or, when necessary, with input from a senior researcher to ensure analytical rigor.

Deductive coding focused on predefined COPD care stages: screening and diagnosis, acute exacerbation management, discharge transition, and home-based rehabilitation and self-management. Within each stage, inductive open coding explored participants’ experiences, emotions, barriers, facilitators, and unmet needs. Codes were iteratively refined into themes and sub-themes through team discussions.

Phase 2: directed qualitative content analysis

Building upon the Phase 1 findings, directed qualitative content analysis was conducted to specify the structural elements of individual patient journey map [37]. Using the predefined COPD care stages as the organizing framework, two researchers independently categorized thematic data into distinct journey components: (a) patient activities, (b) healthcare touchpoints, (c) emotional states, (d) pain points and barriers, (e) facilitators, and (f) unmet needs. Unlike Phase 1, which emphasized identifying meaning patterns, this phase systematically catalogued the manifest content to populate the journey map. Inter-coder agreement was achieved through the same consensus-based process described earlier, ensuring consistency and rigor.

Integration and journey map construction

Preliminary patient journey maps were drafted during interviews and verified with participants for accuracy. These individual maps were synthesized into a consolidated journey map, identifying common patterns and critical points across the cohort. This process aligned with methods outlined by Gualandi et al. [46] and the multi-method approach to patient journey mapping described by Bulto et al. [23]

Ethical considerations

Ethical approval was obtained from the Institutional Review Board (Approval No: 2024-05-0052-E01). All procedures adhered to the Declaration of Helsinki. Written informed consent was collected after providing participants a detailed explanation of the study. Data were pseudonymized upon collection and stored on a secure, password-protected server with restricted access to principal investigators.

Rigour and reflexivity

The study ensured trustworthiness and rigor through multiple strategies. Transcript accuracy was verified by senior qualitative researchers to enhance credibility, and thematic development was critically reviewed via iterative discussions within the multidisciplinary research team. Reflexivity was maintained through regular team debriefings to identify and mitigate potential preconceptions.

Methodological rigor was strengthened by triangulating data from interviews, field notes, and journey maps, and by cross-validating findings through complementary thematic and content analyses. Member checking during interviews further enhanced credibility. These measures collectively ensured the confirmability, dependability, and reliability of the findings.

Results

Participant characteristics

This study included 19 participants (12 males and 7 females), aged 63 to 90 years (mean = 73 years). The final sample size was determined based on thematic saturation, reached when no new themes emerged in subsequent interviews. Demographic details are provided in Supplementary Table S1. Each participant completed one in-depth interview, while three (N4, N11, N16) participated in follow-up interviews to provide supplementary information and clarify ambiguous perspectives. Follow-up data were integrated into the original transcripts, resulting in a total of 22 interview sessions across all 19 participants.

Thematic analysis and patient journey mapping

Through iterative thematic analysis, 26 themes were identified and grouped into three main dimensions: (a) health management tasks, (b) emotional experiences, and (c) systemic pain points. These themes highlighted the intricate challenges, emotional trajectories, and structural barriers experienced by older adults with COPD. Based on these findings, a comprehensive patient journey map (Fig. 1) was created, synthesizing insights along chronological and thematic axes to illustrate the patient experience from symptom onset to long-term disease management.

Fig. 1.

Journey mapping for older patients with chronic obstructive pulmonary disease

Journey framework structure

The patient journey map was structured along two axes. The horizontal timeline delineated three key phases: (1) Screening and Diagnosis, covering early symptoms, outpatient visits, diagnostic procedures, and pre-hospitalization activities; (2) Treatment, concentrating on the management of acute exacerbations; and (3) Home Rehabilitation, addressing long-term management during stable periods. The vertical axis depicted multidimensional aspects of patient experience, encompassing emotional states, practical tasks, challenges, and healthcare touch-points. This framework was iteratively developed by integrating clinical expertise, literature review, and patient interview data, ensuring continuous validation throughout the process.

Screening and diagnosis phase

Health management tasks and challenges

The diagnosis process was marked by significant delays and patient frustration, with participants navigating fragmented healthcare experiences and persistent uncertainty. Initial symptom management often focused on alleviating respiratory distress alongside complications.

From the very beginning, I noticed significant lower limb oedema. Pressing would leave indentations, and the swelling would partially subside after sleep, but never completely resolve. [N2]

I constantly felt breathless and unable to get enough air, but despite multiple visits no one could identify the cause. [N4]

Diagnostic challenges in primary care

Diagnostic delays were exacerbated by resource limitations in primary care settings, where misdiagnosis were common. As one participant described:

My main symptom was a persistent cough. Local clinics didn’t diagnose COPD initially; they treated it as a dru g allergy. I underwent treatment for many days only to find that my condition worsened with their interventions. [N5]

Barriers to accessing appropriate care

Physical limitations and systemic barriers created significant difficulties in accessing appropriate care. The physical toll of seeking medical assistance was evident:

The journey to the hospital itself was exhausting. I was gasping for air, unable to speak, and completely drained after only a few steps. My daughter had to push me in a wheelchair to complete the admissions process because I simply couldn’t breathe well enough to walk. [N14]

Limited mobility also exacerbated these challenges:

The simplest activities became overwhelming. Walking 200 m left me gasping for air, and after getting off the bus, I would be panting so severely that I couldn’t even reach the hospital entrance. [N16]

Dependence on family support for healthcare navigation

Patients heavily relied on family members to cope with logistical and emotional challenges during the diagnostic process:

We relied entirely on my niece to arrange transportation through online booking. My daughters helped with registration and navigation. Being illiterate and unfamiliar with the hospital environment made everything more difficult and stressful. [N9]

Emotional experiences and psychological impact

Participants reported profound emotional distress throughout the diagnostic process, encompassing anxiety about their uncertain futures, frustration with delays, and fear of worsening symptoms.

The inability of the local doctor to identify what was wrong made me increasingly anxious with each visit. I fear that valuable time is being lost and that delays are making treatment more difficult. [N5]

Navigating complex healthcare systems further amplified feelings of stress and helplessness:

Every test, every new department felt like an obstacle course. Our inability to read signs or understand the system made us constantly stressed and dependent on others for basic navigation. [N9]

Receiving a definitive diagnosis elicited mixed emotions: initial relief at gaining clarity, tempered by fear and grief over the chronic nature of COPD:

When the doctor said it was a lifelong condition, I felt a profound sense of loss. The thought of how this would affect my future, my independence, and my family was completely overwhelming. [N14]

For some, the psychological toll reached a breaking point, challenging their emotional resilience and coping capacities:

During particularly bad nights, I would tell my children, ‘Just end my suffering.’ The horror of experiencing another episode of breathlessness in the middle of the night was more than I could bear. [N19]

Systemic barriers and healthcare challenges

Structural barriers in primary care diagnosis

Resource constraints in primary care contributed to misdiagnoses and delayed access to appropriate care, exacerbating patient distress:

I was constantly short of breath, and there was no explanation. I knew something was seriously wrong, but the local clinic simply couldn’t figure it out. [N4]

Being treated for the wrong condition for weeks on end did not just delay proper care, it actually made my condition worse. [N5]

Impact on social roles and family dynamics

The burden of COPD extended beyond physical symptoms, disrupting participants’ social roles and altering family dynamics. Many struggled to maintain their responsibilities:

It became too difficult to care for my paralyzed wife. Dealing with my own health is one thing, but the guilt of failing her is overwhelming. [N17]

Others described similar struggles with previously manageable household tasks::

As a widow with three daughters, I’ve always done everything—the meals, the school, the running of the house. Now, even these simple duties feel impossible. [N15]

Financial strain as a compounding stressor

Financial strain was a significant stressor, magnifying participants’ vulnerability to health challenges and their broader impact on family dynamics:

The cost has been devastating. I’m too old to work, and now my wife has to take on extra work to pay for my treatments. Our children live far away, and I refuse to be a burden to them. [N1]

Multidimensional health care access barriers

Systemic barriers to accessing healthcare were multifaceted, including geographic isolation, navigational challenges, and resulting dependency on others.

For participants in remote areas, reaching a hospital posed significant challenges:

The distance to a proper hospital was a constant problem. Just getting there was a struggle, and once inside, all the stairs and long hallways made it almost impossible to get around when you were out of breath. [N12]

Access was further complicated by difficulties in navigating healthcare facilities:

People don’t realise how confusing hospitals are for us. Something as simple as a clearer sign or a map on the appointment slip would make a world of difference for older people like us. [N17]

These cumulative barriers fostered patterns of dependence affecting both patients and their families:

The hospital was so vast that we were completely lost without my nephew. He’s our living map. Without him, we wouldn’t know where to go or how to get there. [N15]

Treatment phase

Health management tasks and treatment experiences

Symptom management challenges during hospitalization

Symptom management during hospitalization was particularly challenging, with patients coping with severe respiratory distress and overlapping symptoms that impaired basic functioning:

Breathing took over everything. Just turning over in bed left me grasping for air. It got to the point where I was afraid to move at all. [17]

These challenges also disrupted essential physiological functions, particularly sleep, further exacerbating their exhaustion:

I was terrified to sleep because I would wake up feeling like I was drowning. The nights were the worst, and instead of resting, I was only grasping for breath and growing more exhausted. [N6]

The essential role of family support

Family support was crucial for navigating treatment successfully. Many participants described their families as an indispensable source of both practical and emotional assistance:

I could never have done it without my children. They came to every appointment, made sure I took my pills, and kept my spirits up. That’s what got me through. [N8]

This support extended beyond appointments and medications to include companionship and logistical help, forming a lifeline during the most difficult periods:

It was everything to have my family there. They ran to get my medication, stayed with me at the hospital, and just kept me company. That support has been a lifeline during the toughest times. [N14]

Treatment adherence and understanding

While treatment adherence during hospitalization was generally high, patients exhibited varying levels of understanding of their regimens. Some relied entirely on their trust in healthcare providers:

I didn’t question anything they told me to do. I just put myself in their hands, trusting that they knew how to make me better. [N3]

For some, adherence led to significant improvements, even when comprehension was limited:

After they did all the tests, gave me oxygen, and started the new medication, I finally felt a change. The pressure in my chest eased, and I was able to breathe properly again. [N14]

Progressive recognition of integrated management

Participants gradually recognized the importance of integrated management strategies, facilitated by educational interventions and professional guidance. These approaches helped patients better understand and actively engage in their care.

Once the nurses sat down and really explained why the oxygen was so important, it finally clicked for me. I stopped fighting it and became much better at using both the oxygen and the ventilator. [N6]

Targeted advice on managing physical activity also empowered patients to balance functional mobility with safety:

They told me, ‘Do not push yourself, but also do not just stay in bed.’ That advice helped me find a balance - to stay as active as I could without making my breathing worse. [N18]

Professional interventions, such as physiotherapy, further helped foster patient self-efficacy:

When the physiotherapist showed me exactly what exercises to do, it made all the difference. I finally felt like I was doing something to help myself get better, like I had some power over the situation. [N15]

Emotional experience and psychological responses

Symptom-related psychological distress

The treatment phase elicited significant emotional distress, closely tied to the physical symptoms of COPD. Participants described a sense of terror during acute respiratory episodes:

The feeling of suffocation was more than physical. It’s pure terror. During the worst of the attacks, I was convinced I was going to die. That fear stays with you, even after you can breathe again. [N19]

Fear of mortality and disease progression

Fear of mortality and concerns about disease progression emerged as prominent anxieties during hospitalization. Participants frequently worried about surviving future exacerbations:

On bad nights, I couldn’t escape the thought that I might not make it. The fear of the next attack was always at the back of my mind, a constant worry that wore me down. [N6]

For some, longer or more severe periods of illness intensified these fears:

I’d gotten through bad spells before, but this one was different. It lasted longer and felt worse. For the first time, I was genuinely afraid that the treatment was simply not going to work. [N12]

Guilt and family burden concerns

Many participants reported feelings of guilt about the caregiving responsibilities they placed on their families. This emotional burden further compounded their distress:

Being in the hospital has put me in such a conflict. I knew I needed to be here, but the thought of my daughter, who was already caring for her mother, having to care for me too… it made me feel so guilty and useless. [N16]

Financial strain added to these feelings, deepening participants’ sense of being a burden:

My illness is just piling on more money troubles. With another son also in need of costly care, I feel like just another burden on my family’s shoulders. [N9]

Discharge anxiety and dependency dynamics

The hospital environment provided a sense of safety for many participants, leading to significant anxiety about being discharged and transitioning back to home care:

Part of me wanted to go home, but another part was scared to leave the hospital. Here, you feel safe because help is right there. The thought of going home actually made me feel depressed, which surprised me. [N19]

Transition support needs

Participants identified a strong need for structured support following discharge. Establishing continuity of care was seen as essential for maintaining progress and managing anxiety:

It would make a world of difference if we could just stay in touch with our health care team online after we leave the hospital, it would make a world of difference. It would be like having a safety net as we learn to manage on our own again. [N6]

Systemic barriers and unmet needs

Gaps in knowledge and self-management understanding

Participants exhibited notable gaps in their understanding of self-management principles during the treatment, particularly regarding medication adherence and integrated care strategies.

I didn’t fully understand my medications. If I ran out, I didn’t think there was any hurry to get more. I didn’t realize that for a long-term illness, you have to take them every day for them. [N18]

This lack of awareness extended to the interconnection between diet, exercise, and medication:

I never thought about what eating, exercise and medicine had to do with each other. When I took medicine, I was just taking medicine. When I took my medication, I was just taking it. Exercise used to be a totally separate thing. [N7]

Activity avoidance and protective family dynamics

A pattern of activity avoidance emerged as a major barrier to recovery, driven by participants’ fear of symptom exacerbation and physical discomfort:

I was so afraid that moving around would make me short of breath that I ended up not moving at all. Without a clear idea of what was ‘safe’ to do, it felt safer to just do nothing, even though I now know that probably slowed down my recovery. [N13]

Immediate breathing difficulties further reinforced this inactivity in the absence of professional guidance:

Any time I tried to be active, my breathing would get worse right away. With no one explaining how moving would help in the long run, staying still felt like the only way to stay safe. [N1]

Families often unintentionally perpetuated this avoidance through protective behaviors, limiting the patient’s recovery potential:

Watching how badly he struggled to breathe after any movement made us overly protective. We found ourselves constantly telling him, ‘Do not do that, you’ll make it worse,’ not realising that by stopping him from moving, we might be doing more harm than good. [N14’s family member]

Inadequacies in the social support system

Existing social support systems were insufficient to meet the demands of COPD management, leading to heightened feelings of isolation and strain within caregiving networks.

Patients often relied on the hospital environment for security, creating anxiety about transitioning back to home care:

You start to rely on the hospital without even realizing it. Knowing that a nurse is just a call button away makes you feel safe. The thought of going back to a place where you’re alone and help is not immediately available is frightening. [N1]

Families managing multiple caregiving responsibilities struggled with resource allocation, further aggravating the problem:

We were already stretched thin caring for my other son. When I got sick, it was like adding a heavy stone to a bag that was already full. There were just not enough people, not enough money, not enough manpower, and everyone ended up with less because of it. [N9]

For some patients, the dual role of caregiver and patient added significant emotional strain.

Even from my hospital room, I was still trying to be a caregiver, calling home to make sure my husband was taking his own medication, and worrying if he had eaten. The nurses kept telling me to rest, but my mind wouldn’t stop. It was exhausting. [N3]

Home rehabilitation phase

Health management tasks and adaptation strategies

During the home rehabilitation phase, participants employed various strategies to manage their condition, however, significant variability was noted in adherence, comprehension, and integration of care routines across key areas.

Approaches to medication management

Medication management varied widely, with some participants struggling to follow prescribed regimens and others building effective, sustainable routines.

The instructions were clear, but I have to admit that I was inconsistent. I often use my inhaler only when I feel short of breath, not on the regular schedule they give me. It made sense at the time, but now I see that was not the right approach. [N11]

Establishing structured routines enhanced adherence for many:

What really worked was making my medication part of my daily routine, right after breakfast and before brushing my teeth at night. Once it became a habit, I had no more to think about. [N17]

In addition, family support played a vital role in maintaining consistency:

I wouldn’t have been able to stick to my schedule without my wife. She reminds me when it’s time for my medication and keeps everything organised. That support has been everything. [N7]

Practice of oxygen therapy

Adherence to oxygen therapy demonstrated considerable inconsistency, rooted in varying levels of understanding and reliance on symptom-driven approaches.

Ventilator therapy became part of my nightly routine, though I didn’t always understand the optimal way to use it. [N3]

For some participants, unclear guidance on usage schedules hindered optimal therapy outcomes:

I only turned on the oxygen when I felt I was in real trouble. Since no one gave me a firm schedule, I played it by ear, which probably meant I didn’t get the full benefit. [N14]

Need for ongoing professional support

Participants consistently emphasized the importance of structured professional support and education during the transition from hospital to home-based care. Several challenges associated with this transition were highlighted.

The abrupt nature of discharge exacerbated feelings of uncertainty:

Leaving the hospital felt like being pushed out of a nest. It was too sudden. If we had a smoother transition, with more teaching and a way to check in, it would be less scary. Perhaps a video call with a nurse could keep us connected without making us dependent. [N6]

Regular follow-up was identified as a means to ease this transition:

Just knowing that a nurse Is going to call me in a week to see how I’m doing will take a huge weight off my shoulders. It’s the uncertainty of being alone with this that’s so unnerving. [N12]

Barriers to accessing ongoing support left participants feeling isolated:

After leaving the hospital, I felt like I had fallen through a chasm. My local clinic couldn’t answer my questions, and getting back to the big hospital was a huge trip for me. If I could just get advice without traveling, I’d be much more likely to keep up with my follow-ups. [N7]

Implementation of pulmonary rehabilitation

Engagement in pulmonary rehabilitation exercises varied greatly, with adherence often undermined by limited understanding of their importance and principles.

Some participants relied on general activity without clarity on its appropriateness:

I try to walk every day, that’s my main exercise. But I was never quite sure—did I walking long enough? Or maybe it is too much? I also use my ventilator, which seemed to help, but I just don’t know if I’m doing any of this the right way. [N13]

Others opted for familiar forms of exercise but neglected prescribed therapeutic techniques:

I keep myself moving by riding my electric bike and taking short walks. But those specific breathing exercises the therapist showed me… They were strange to them, and I have to admit that I hardly ever remember doing them. [N2]

A broader lack of understanding about integrated rehabilitation approaches, including diet, exercise, and oxygen therapy, was evident:

I knew I had to stay active, so I did. But the idea that what I eat, or anything else, could be just as important as exercise never really crossed my mind. I was just focusing on one thing at a time. [N15]

Emotional experience and psychological adaptation

Persistent anxiety and fear of exacerbation

During home rehabilitation, participants frequently experienced persistent anxiety, particularly surrounding the potential for acute exacerbations. The absence of immediate medical support magnified these concerns:

The thought of having another severe attack like the one that put me in the hospital was always at the back of my mind. At home, what would I do if I suddenly lost my breath? Who will help me in time? That fear is paralyzing.[N12].

This anxiety often led to activity avoidance, which impeded physical recovery. A family member observed the debilitating impact of this fear:

He was convinced that any extra effort would land him back in the emergency room. It’s not just about avoiding discomfort; he was genuinely terrified that going outside might trigger another life-threatening episode. [N19’s family member]

Development of adaptive coping strategies

Despite initial challenges, some participants developed adaptive coping mechanisms to better manage their condition emotionally. Gradual self-awareness played a key role in alleviating fear.

As time went on, I learned to understand what my body could and couldn’t handle. That initial fear started to fade as I got better at spotting the early signs of trouble and knew what to do about it. [N17]

Participants also employed cognitive strategies to reframe their emotional responses:

I’ve taught myself to look at things differently. When I get frustrated with my limitations, I try to focus on the good things I still have. And I’ve come to terms with the fact that some parts of this are out of my control. Getting rid of that really took the pressure off me. [N6]

Systemic barriers and ongoing challenges

Medication adherence challenges in home setting

Medication adherence remained a significant challenge for many participants, stemming from forgetfulness and a lack of understanding of the preventive nature of their treatment:

At home, I have to remember everything myself. Some days I just forget or I’m not sure if I have taken my afternoon pills. [N5]

Treatment adherence was also complicated by the immediate discomfort of symptoms outweighing the perceived benefits of preventive medications:

We try to follow the schedule, but when his breathing gets bad, he refuses to take the preventative medications. He said they did not help with the immediate symptoms, and I did not know how to persuade him.[N19’s family member].

Persistent knowledge gaps in self-management

Although participants received some education during hospitalization, significant knowledge gaps persisted, particularly regarding the preventative value of self-management. These deficits hindered participants’ ability to connect daily practices with long-term outcomes:

Doctors always say how important it is to keep up with prevention, like using an inhaler and doing the exercises. But I could not get it… what has that got to do with me suddenly being a lot worse? I know my lungs are bad and I get short of breath, but doing these things every day - will it really keep me out of the hospital? I’ve never been able to connect the dots. [ N13]

The need for integrated, accessible education tools was evident:

There were gaps in my understanding in many areas, such as nutrition, exercise, watching my symptoms, and what to do in an emergency. If I had had a guide that put it all together, managing at home would be a lot less intimidating. [N19]

Technical challenges in oxygen therapy management

The transition to managing oxygen therapy at home was fraught with technical challenges, including device operation and decision-making:

I’ve been trying to track my oxygen levels at home. I write down the numbers and adjust them based on how I am feeling. But I was never confident that I was making the right choices. I knew I needed proper guidance, but I didn’t know where to get it. [N3]

For some, the complexity of equipment increased reliance on family members and heightened anxiety:

The oxygen concentrator felt complicated and intimidating. I did not understand what the different settings meant or how to interpret the displayed figures. This meant that I had to rely on my son for even basic adjustments, which left me feeling inadequate and constantly worried. [N12]

Impact of fatigue and functional limitations

Persistent fatigue and physical decline reduced participants’ ability to manage their care and maintain independence. Daily tasks became increasingly burdensome, further diminishing their quality of life:

I notice my limitations more every day. Simple tasks like making a bed or preparing a meal now require so much effort. I’m constantly having to find new ways to manage, and it’s frustrating to lose my independence bit by bit. [N3]

Severe fatigue also negatively affected adherence to self-care routines:

This constant exhaustion makes it hard to care about anything. Just thinking about doing my breathing exercises or organizing my medications feels overwhelming. Some days, I end up skipping important parts of my routine because I simply don’t have the energy. [N14]

Discussion

This study utilized the PJM framework to investigate the continuum of COPD care spanning from symptom onset and diagnosis to extended recovery. Systematic analysis of patient experiences provided key insight into systemic barriers and highlighted opportunities for optimizing integrated care to address physiological, psychological, and educational gaps across care phases [47].

The pre-diagnostic phase: a window of lost opportunity

Delayed diagnosis remains a critical challenge in COPD management, with significant consequences for patient outcomes [12, 48]. Despite the availability of diagnostic tools such as spirometry, systemic barriers (including insufficient awareness among primary care providers and patient normalization of early symptoms) often hinder timely identification of the condition [49]. For example, participants frequently misattributed chronic cough or dyspnea to benign conditions, such as seasonal allergies or respiratory infections, delaying care-seeking behaviors [12, 50].

Previous studies emphasize the strong association between early intervention and improved clinical outcomes [51]; however, inefficiencies in primary care workflows, including a lack of disease-specific expertise, exacerbate diagnostic delays and fragment referral pathways [12, 15]. Such issues are indicative of broader global trends in chronic disease management, where early detection initiatives frequently fail due to poorly coordinated health systems [50]. To address these barriers, there is a need for a paradigm shift in the role of nurses within primary care settings. Nurses should be empowered as first-line detectors and system navigators, facilitating early COPD identification, prompting diagnostic referrals, and improving care coordination [21]. These adjustments would strengthen early intervention efforts, improve timely diagnosis rates, and mitigate the downstream impacts of late-stage disease detection [52, 53].

Inpatient stay: a missed opportunity for therapeutic education

Hospitalization during acute exacerbations represents a critical phase in the COPD care journey, primarily focused on achieving physiological stabilization [54]. However, insights from the PJM framework reveal that inpatient care settings often fail to maximize their potential as platforms for therapeutic education [55]. Many participants reported significant anxiety and uncertainty about managing their condition post-discharge, underscoring the inadequacy of traditional discharge planning in equipping patients for home care. By incorporating targeted educational interventions during hospital stays, healthcare providers can address these gaps, particularly in areas such as respiratory device use, medication adherence, and lifestyle modifications. Such interventions can empower patients and foster greater confidence in self-management, ultimately reducing readmissions and improving long-term health outcomes [15].

The inpatient setting offers a unique opportunity to leverage “teachable moments” when patients are receptive to learning [56]. Proactive education led by nursing staff can bridge the transition between hospital and community care, ensuring patients and families are adequately prepared for the challenges of home rehabilitation [54]. This approach aligns with previous literature calling for the integration of educational nursing strategies as a core component of inpatient care, highlighting the dual importance of clinical and psychological stability during this phase [57, 58].

Navigating the post-discharge: imperative for sustained support

The transition to home care represents the most significant discontinuity in the COPD care continuum highlighted by the PJM framework. Challenges such as inconsistent medication adherence, knowledge gaps (particularly in oxygen therapy use) and activity avoidance due to fear are prevalent [33, 59]. However, these issues primarily stem from systemic limitations rather than individual patient failings [33, 59].

The dependence on online communities and generic advice for guidance highlights the insufficiency and lack of accessibility in professional support systems [60]. These findings underscore the need for tailored, sustainable self-management strategies, supporting prior calls for individualized patient care [61].

A potential solution lies in implementing a nurse-led, integrated “hospital-community-home” framework, where advanced practice nurses or case managers provide structured follow-ups, such as regular calls and home visits. Standardizing these interventions can effectively address current gaps in continuity of care and deliver more personalized patient support [62].

Methodology and practical implications for nursing

The PJM framework used in this study goes beyond descriptive analysis, serving as a strategic instrument for identifying systemic weaknesses and redesigning care models [15]. It emphasizes patient-centered, visualized insights, making the case for resource reallocation towards preventive and community-focused nursing roles [15, 23].

For nursing leadership, this framework provides a strong foundation to advocate for innovative care models and develop evidence-based in-service training programs targeting specific challenges across the COPD care continuum [47]. Future research should employ longitudinal PJM methodologies to measure the impact of nurse-led interventions, focusing on outcomes such as reduced hospital readmissions and slower functional decline [47]. These findings would support a shift toward a more integrated and compassionate approach to COPD care.

Strengths and limitations

A major strength of this study lies in the application of the PJM framework, which provided a comprehensive, patient-centered perspective on the COPD care continuum and captured nuanced insights often overlooked by conventional qualitative methods. Additionally, the inclusion of participants from diverse socioeconomic backgrounds enhances the transferability and relevance of the findings.

However, this study has several limitations. First, recruiting only inpatients may over-represent crisis-driven care experiences, potentially excluding the perspectives of individuals with milder or undiagnosed COPD. Second, the study was conducted in a single geographic region of China, limiting its generalizability to other healthcare systems. Third, participants’ retrospective narratives may have been influenced by recall bias or shaped by their post-hospitalization experiences. Finally, the moderate sample size might not fully capture less common themes in the COPD care journey, and the exclusive focus on patient perspectives limits a holistic understanding of the care continuum. Future research should adopt a multi-stakeholder approach that includes input from patients, caregivers, and healthcare professionals, as well as expand recruitment to community-based and primary care settings to provide a more comprehensive understanding of COPD management.

Conclusion

This study demonstrates that PJM yields valuable insights into the lived experiences of older adults with COPD, revealing that their healthcare journey extends beyond conventional clinical pathways. Rather, it represents a prolonged and emotionally complex process, characterized by diagnostic uncertainty, fragmented care, and evolving dependence. Mapping identifies the diagnostic phase and the transition from hospital to home as particularly vulnerable periods, during which targeted support is essential. To effectively enhancepatient experiences and outcomes, healthcare systems must shift from episodic, acute-focused care models to a continuous, proactive, and truly patient-centered support framework. Future interventions should prioritize addressing key challenges through structured self-management education, integrated digital health solutions, and the strengthening of primary and community care capacity.

Supplementary Information

Supplementary Material 1. ^{(26.5KB, doc)}

Supplementary Material 2. ^{(80KB, doc)}

Abbreviations

COPD

Chronic Obstructive Pulmonary Disease

PJM

Patient Journey Mapping

AECOPD

Acute Exacerbations of Chronic Obstructive Pulmonary Disease

FEV1

Forced Expiratory Volume in one second

CAT

COPD Assessment Test

Authors’ contributions

Ying Tan, Wenting Zhao, and Chuanwen Liu conceptualized and designed the study, developed a self-designed interview protocol for COPD patient journey mapping (the protocol was formulated based on the research objectives and relevant literature on COPD health management), and oversaw data analysis. Ying Tan conducted data collection and transcribed qualitative interviews, and drafted the original manuscript. Jiahui Xu and Xiaohai Hu performed formal analysis of journey mapping data and thematic coding of interview content. Jiayao Liu and Jirong Zhang coordinated participant recruitment and research site access. Wenting Zhao revised and refined the manuscript. All authors take full responsibility for the content and approve the final version for publication.

Funding

This study was supported by the Doctoral Research Initiation Fund of Changzhi Medical College (Grant No. BS202506), the Social Development Research Project sponsored by Puyang Science and Technology Bureau (Grant No. 2503030), and the National Science and Technology Innovation 2030 Major Project of China (Grant Nos. 2024ZD0524300, 2024ZD0524304).

Data availability

Datasets are available from the corresponding author upon reasonable request, in accordance with data transparency and ethical guidelines of Changzhi Medical College and the Declaration of Helsinki.

Declarations

Ethics approval and consent of participation

This qualitative study was approved by the Medical Ethics Committee of Puyang General Hospital (Approval No.: 2024-05-0052-E01). All procedures adhered to the ethical standards of the 1964 Declaration of Helsinki and its subsequent amendments. Informed consent was obtained from all participants after providing a detailed explanation of the study’s objectives, procedures, potential risks, and the right to withdraw at any time without penalty. No minors participated in this study.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.