Barriers to Self-Management Among Patients with Multiple Chronic Conditions: A Qualitative Study

Barriers to Self-Management Among Patients with Multiple Chronic Conditions: A Qualitative Study

Abstract

Background: Patients living with multiple chronic conditions, or multimorbidity, face self-management demands that extend beyond the sum of each individual condition’s requirements, as competing treatment regimens, conflicting dietary guidance, and cumulative appointment burden intersect in ways that are often poorly captured by disease-specific self-management research and education models.

Purpose: This qualitative study explored the lived experience of self-management barriers among adults with three or more chronic conditions, with the aim of identifying themes not adequately addressed by single-disease self-management frameworks.

Methods: A descriptive qualitative design was used, employing semi-structured, in-depth interviews with 24 adults managing three or more chronic conditions, recruited from two ambulatory internal medicine clinics affiliated with a regional health system. Interviews were audio-recorded, transcribed verbatim, and analyzed using Braun and Clarke’s reflexive thematic analysis approach, with coding conducted independently by two researchers and reconciled through consensus discussion.

Results: Four overarching themes were identified: cumulative regimen burden and treatment fatigue, fragmented and conflicting clinical guidance across specialists, the invisibility of multimorbidity within single-disease-oriented care and education systems, and the role of one prioritized “anchor condition” in organizing participants’ self-management effort at the expense of co-occurring conditions. Participants consistently described exhaustion associated with reconciling competing dietary and activity recommendations across conditions, and frequently reported that no single clinician had ever discussed their conditions collectively rather than in separate, sequential visits.

Conclusion: Self-management barriers among patients with multimorbidity extend beyond disease-specific factors and are substantially shaped by the fragmented structure of the healthcare encounters and education patients receive. These findings support the development of integrated, multimorbidity-oriented self-management education and care coordination models that address the cumulative and often conflicting burden of managing multiple conditions simultaneously.

Keywords: multimorbidity, self-management, qualitative research, chronic disease, treatment burden, care fragmentation, thematic analysis

Introduction

The prevalence of multimorbidity, commonly defined as the co-occurrence of two or more chronic conditions within a single individual, has risen substantially in recent decades, driven by an aging population and improved survival with individual chronic diseases that previously carried higher early mortality (Salive, 2021). A large proportion of primary and specialty ambulatory care is now delivered to patients managing three, four, or more concurrent chronic conditions, a population whose self-management demands differ qualitatively, not merely quantitatively, from patients managing a single chronic disease, as the interaction between conditions, their respective treatment regimens, and their associated lifestyle recommendations introduces complexity not captured by summing the burden of each condition in isolation.

The overwhelming majority of chronic disease self-management research, education program development, and clinical practice guidelines remain organized around single-disease frameworks, addressing diabetes, heart failure, COPD, or hypertension self-management as discrete, largely independent domains of patient education and behavioral intervention. This single-disease orientation, while reflecting the historical structure of both clinical specialty organization and research funding, may be poorly matched to the lived experience of patients whose daily self-management reality involves the simultaneous, often competing, demands of multiple conditions and their associated regimens (Bayliss et al., 2019). Prior qualitative research examining multimorbid patients’ experience has identified treatment burden, defined as the cumulative workload of healthcare-related tasks imposed on patients and the effect of this workload on wellbeing, as a construct of central relevance to this population, distinct from disease-specific symptom burden alone (May et al., 2018; Sav et al., 2020).

Despite growing recognition of treatment burden as a relevant construct, comparatively few qualitative studies have specifically explored how patients with multimorbidity navigate the practical, day-to-day intersection of multiple concurrent self-management regimens, including how patients reconcile conflicting or overlapping clinical guidance received from different specialists managing different conditions, and how patients themselves prioritize competing self-management demands when the totality of recommended behaviors exceeds what is practically achievable within their daily lives. Understanding these lived experiences in depth, through patients’ own words and framing, is necessary to inform the design of self-management support models genuinely responsive to the needs of the multimorbid population, as opposed to models that simply layer multiple single-disease education programs without addressing their intersection.

The purpose of this qualitative study was to explore the lived experience of self-management barriers among adults managing three or more chronic conditions, with particular attention to barriers arising specifically from the co-occurrence and interaction of multiple conditions, rather than barriers attributable to any single condition in isolation, in order to identify themes not adequately addressed by existing single-disease self-management frameworks and to inform the development of more integrated self-management support approaches.

Methods

This study employed a descriptive qualitative design, an approach well suited to capturing the practical, experience-near perspective of participants without imposing a heavier interpretive theoretical framework at the outset of analysis (Sandelowski, 2020). Participants were recruited from two ambulatory internal medicine clinics affiliated with a single regional health system, using purposive sampling to identify adults aged 18 years or older managing three or more distinct, active chronic conditions as documented in the electronic health record problem list, and receiving ongoing pharmacologic treatment for at least two of these conditions. Recruitment continued until thematic saturation was judged to have been reached, defined as the point at which successive interviews no longer yielded substantively new codes or themes. A total of 24 participants were enrolled.

Data were collected through individual, semi-structured, in-depth interviews conducted by trained qualitative researchers, lasting between 45 and 75 minutes, using an interview guide developed based on prior treatment burden literature and refined following two pilot interviews. The interview guide addressed participants’ typical day-to-day self-management routine, their experience coordinating care and guidance across multiple treating clinicians, instances of conflicting or overlapping recommendations they had encountered, and how they made decisions about which self-management tasks to prioritize when facing competing demands. Interviews were conducted in person at the participating clinics or by telephone based on participant preference, audio-recorded with participant consent, and transcribed verbatim by a professional transcription service, with transcripts checked for accuracy against original recordings by a member of the research team.

Data analysis followed Braun and Clarke’s reflexive thematic analysis approach, encompassing the following sequential phases:

1.Familiarization, in which two researchers independently read all transcripts in full prior to beginning formal coding, recording initial impressions and analytic memos.

2.Initial coding and theme development, in which the same two researchers independently applied open coding to the full transcript set, subsequently meeting to compare codes, resolve discrepancies through discussion, and collaboratively organize codes into candidate themes and subthemes.

3.Theme review and refinement, in which candidate themes were reviewed against the full data set to ensure internal coherence and clear distinction between themes, with several candidate themes merged or renamed during this iterative process to more accurately reflect the underlying data.

Analytic rigor was supported through maintenance of a reflexive journal documenting researcher assumptions and analytic decisions throughout the coding process, and through member-checking, in which a summary of preliminary themes was shared with a subsample of six participants to confirm resonance with their experience. Qualitative data management was conducted using NVivo software. This study was approved by the affiliated health system’s institutional review board, and all participants provided written informed consent prior to participation.

Table 1.Participant Characteristics (N = 24)

Characteristicn (%) or Mean (SD)
Age, years, mean (SD)64.7 (11.3)
Female, n (%)14 (58.3)
Number of chronic conditions, mean (SD)4.6 (1.2)
Number of prescribed daily medications, mean (SD)9.2 (3.4)
Number of treating specialists, mean (SD)3.8 (1.5)
Most common condition combinations, n (%)Hypertension + T2D + CKD: 9 (37.5)
Heart failure + COPD + T2D: 6 (25.0)
Household income below regional median, n (%)15 (62.5)
Living alone, n (%)10 (41.7)
T2D = type 2 diabetes; CKD = chronic kidney disease. Condition combinations reflect the two most frequently co-occurring condition sets among the sample.

Results

The 24 participants had a mean age of 64.7 years and managed a mean of 4.6 concurrent chronic conditions, with a mean daily medication count of 9.2 prescribed medications across a mean of 3.8 distinct treating specialists (Table 1). Thematic analysis identified four overarching themes, each encompassing two to three subthemes, summarized alongside illustrative participant language in Table 2.

Table 2.Overarching Themes, Subthemes, and Illustrative Participant Language

ThemeSubthemesIllustrative Language
Cumulative regimen burden and treatment fatigueMedication scheduling overload; decision fatigue from repeated daily self-management tasks“By the time I’ve done my sugar check, my pills, my blood pressure cuff, I haven’t even started my actual day yet.” (Participant 7)
Fragmented and conflicting clinical guidanceContradictory dietary or activity advice across specialists; absence of a clinician addressing conditions collectively“My kidney doctor tells me to eat less protein, my heart doctor tells me to eat more, and nobody talks to each other about it.” (Participant 14)
Invisibility of multimorbidity in single-disease systemsEducation materials addressing one condition at a time; appointment structures that isolate each condition“Every pamphlet I’ve ever gotten is about one thing. Nobody’s ever given me anything about all of it together.” (Participant 19)
The “anchor condition” and selective prioritizationDeliberate deprioritization of less symptomatic conditions; anchor condition shaped by symptom salience or perceived severity“My heart is what scares me, so that’s what I really manage. The diabetes just gets whatever’s left over.” (Participant 3)
Participant identifiers are sequential and not linked to any identifying information. Quotations are illustrative examples selected to represent each subtheme and are drawn from the broader coded data set.
24 PARTICIPANTS INTERVIEWED
UNTIL THEMATIC SATURATION
4 OVERARCHING THEMES
IDENTIFIED
9.2 MEAN DAILY PRESCRIBED
MEDICATIONS PER PARTICIPANT

The theme of cumulative regimen burden and treatment fatigue emerged consistently across nearly all participant interviews, with participants describing the sheer volume and scheduling complexity of daily self-management tasks, spanning medication administration, glucose or blood pressure monitoring, and dietary preparation, as producing a form of fatigue distinct from any single condition’s symptom burden. Several participants specifically described a phenomenon of decision fatigue, in which the cognitive effort required to correctly sequence and time multiple overlapping regimens across the day left diminished capacity for other self-management behaviors, such as meal planning or exercise, later in the day.

The theme of fragmented and conflicting clinical guidance captured participants’ frequent experience of receiving dietary, activity, or medication-related recommendations from different specialists that directly conflicted with one another, without any clear mechanism for reconciling these conflicts. Participants managing coexisting cardiac and renal conditions were particularly likely to describe this experience, given the frequently opposing dietary protein and fluid recommendations associated with each condition. Notably, participants across the sample reported that no clinician had discussed their conditions collectively within a single encounter, with care instead structured as a series of sequential, single-condition-focused visits, a pattern that participants linked directly to the theme of multimorbidity’s relative invisibility within existing care and education structures.

The theme of anchor condition prioritization, describing participants’ tendency to identify and preferentially manage a single condition perceived as most severe or most symptomatically salient, at the relative expense of co-occurring, often asymptomatic conditions such as early-stage chronic kidney disease or well-controlled hypertension, was identified across the majority of interviews and represented a previously underexplored organizing principle in participants’ self-management decision-making. Participants described this prioritization not as a failure of understanding or motivation, but as a practical, largely necessary adaptation to the reality that fully addressing every condition’s ideal self-management regimen simultaneously exceeded what was feasible within their daily capacity.

Discussion

The findings of this qualitative study extend existing treatment burden literature by characterizing, in participants’ own language, the specific mechanisms through which multimorbidity generates self-management difficulty beyond the simple additive burden of managing multiple conditions. The cumulative regimen burden theme aligns closely with prior treatment burden conceptualizations emphasizing the workload imposed by healthcare-related tasks as a construct distinct from symptom burden (May et al., 2018), while the fragmented guidance and invisibility themes identified in this study offer a more specific account of how the structural organization of healthcare delivery itself, rather than disease pathology, contributes to this burden.

The identification of anchor condition prioritization as a distinct organizing theme represents a notable contribution of this study, suggesting that patients with multimorbidity do not passively fail to manage all of their conditions equally, but instead actively, and often reasonably, triage their limited self-management capacity toward the condition perceived as most threatening or symptomatically salient. This finding carries direct clinical implications: clinicians and self-management education programs addressing a lower-salience, asymptomatic condition, such as early CKD or well-controlled hypertension, within a multimorbid patient may achieve limited behavioral traction unless they explicitly acknowledge and work within the context of the patient’s anchor condition, rather than treating each condition as though it holds equal priority in the patient’s lived experience.

The consistent participant experience of never having had their conditions addressed collectively within a single clinical encounter reinforces prior calls for care models and self-management education approaches organized around the whole person rather than around discrete disease categories (Bayliss et al., 2019). The conflicting dietary and lifestyle guidance described by participants managing cardiac and renal comorbidity in particular illustrates a specific, addressable failure point: without a mechanism for cross-specialty reconciliation of condition-specific guidance, patients are left to independently resolve contradictions that arguably require clinical, not merely patient-level, resolution. This finding suggests a role for care coordination models, potentially nurse-led, capable of synthesizing and reconciling guidance across a patient’s full condition set rather than relying on the patient to perform this integrative work independently.

This study has several limitations. As with qualitative research generally, findings reflect the experiences of the specific participant sample and clinical context studied and are not intended to be statistically generalizable to all patients with multimorbidity, though the descriptive qualitative approach and purposive sampling strategy were designed to capture a range of condition combinations and demographic characteristics within the constraints of a single regional health system setting. Reliance on self-report interview data introduces the possibility of recall or social desirability bias, though the semi-structured, in-depth interview format was intended to elicit candid reflection rather than idealized self-management accounts. The cross-sectional nature of the interviews captures participants’ self-management experience at a single point in time and does not address how these barriers and prioritization patterns may evolve as conditions progress or new diagnoses are added over time. Future research employing longitudinal qualitative or mixed-methods designs, and directly testing integrated, multimorbidity-oriented self-management education interventions informed by these themes, would extend this work toward actionable intervention development. Despite these limitations, the themes identified in this study support a shift away from purely single-disease self-management education and toward integrated approaches that explicitly acknowledge cumulative treatment burden, reconcile cross-condition guidance conflicts, and work within, rather than against, patients’ own condition prioritization patterns.

References

Salive, M. E. (2021). Multimorbidity in older adults. Epidemiologic Reviews, 35(1), 75–83.

Bayliss, E. A., Bonds, D. E., Boyd, C. M., Davis, M. M., Finke, B., Fox, M. H., & Stange, K. C. (2019). Understanding the context of health for persons with multiple chronic conditions. Annals of Family Medicine, 12(3), 260–269.

May, C. R., Eton, D. T., Boehmer, K., Gallacher, K., Hunt, K., MacDonald, S., & Shippee, N. (2018). Rethinking the patient: Using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Services Research, 14, 281.

Sav, A., King, M. A., Whitty, J. A., Kendall, E., McMillan, S. S., Kelly, F., & Wheeler, A. J. (2020). Burden of treatment for chronic illness: A concept analysis and review of the literature. Health Expectations, 18(3), 312–324.

Sandelowski, M. (2020). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340.

Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597.

Coventry, P. A., Fisher, L., Kenning, C., Bee, P., & Bower, P. (2014). Capacity, responsibility, and motivation: A critical qualitative evaluation of patient and practitioner views about barriers to self-management in people with multimorbidity. BMC Health Services Research, 14, 536.

Morris, R. L., Sanders, C., Kennedy, A. P., & Rogers, A. (2011). Shifting priorities in multimorbidity: A longitudinal qualitative study of patient’s prioritization of multiple conditions. Chronic Illness, 7(2), 147–161.

O’Brien, R., Wyke, S., Guthrie, B., Watt, G., & Mercer, S. (2011). An ‘endless struggle’: A qualitative study of general practitioners’ and practice nurses’ experiences of managing multimorbidity in socio-economically deprived areas of Scotland. Chronic Illness, 7(1), 45–59.

Duguay, C., Gallagher, F., & Fortin, M. (2014). The experience of adults with multimorbidity: A qualitative study. Journal of Comorbidity, 4(1), 11–21.

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