Changes in healthcare management have allowed more people to live with chronic diseases (CD) that were once acute and life-threatening.1 A CD is a physical or mental health condition that extends for more than one year leading to functional restrictions and increasing medical care needs.2 CD have become a significant U.S. public health issue, where 60% of adults live with one or more3 and 27.2% have multiple CD, representing over 85% of annual health care costs, or 3.8 trillion dollars.1,2) The consequences of CD significantly impact the social, mental, and physical health of people living with them. Usually, CD are reflected in poor quality of life and negative consequences for individuals, caregivers, families, and communities.4 Cancer, diabetes, hypertension, stroke, asthma, and HIV are examples of CD leading to hospitalization, long-term disability, and mortality.4
Diverse CD share common challenges associated with their management, including symptom recognition, medication adherence, and complex regimens.5 Individuals must also develop strategies to maintain proper nutrition, exercise, adjust to psychosocial demands (e.g., lifestyle regimens), and engage in effective relationships with healthcare providers over time.5 Therefore, self-management offers promise for a better understanding of the disease's symptoms and management.
In addition, a CD self-management approach helps inform the development of strategies for evaluating health outcomes focused on decreasing health disparities and increasing the wellness of people facing CD.6,7 Health disparities usually result from social determinants of health (SDOH), or the conditions in places where people live, learn, work, and play, affecting a wide range of health-related outcomes and, consequently, individuals' quality of life.8. In the last decade, approaches to decreasing health disparities and improving people's quality of life with CD have increasingly become the core of nursing research.1,9
A critical limitation of existing interventions among those living with CD is the tendency to solely focus on single or individual-level factors. Multilevel intervention research are studies that include interventions targeted at various levels of the socio-ecological models and individual and biological factors closely related to individual health outcomes.10 This article aims to discuss multilevel self-management approaches in nursing to reduce health disparities among people living with CD.
Conceptual clarity regarding self-management and its integration into clinical practice is still a concern in the nursing community.11 As a general health concept, self-management is an individual's ability, in collaboration with their family, community, and healthcare providers, to manage symptoms, treatments, lifestyle changes, and the consequences of health conditions.12 Self-management also implies monitoring the illness and using cognitive, behavioral, and emotional strategies to maintain or manage health changes.5) A recent definition encompassing all the previous concepts describes self-management as an intrinsically controlled ability to live with the medical role and emotional consequences of CD in partnership with social networks and healthcare providers.11
Historically, nursing science has explored self-management for its impactful role in disease prevention, health promotion, and symptom management. For 30 years, The National Institute of Nursing Research (NINR) in the U.S. has been focused on supporting and promoting research into the development and broader application of self-management. The science of self-management supported by the NINR is based on the individuals' and families' responsibility as active participants in maintaining the well-being of those living with CD.1,9
Recently, with the leadership of the new NINR Director, new research priorities have been established.9 These new priorities include decreasing racism, using multilevel perspectives to implement interventions to address SDOH, and using nursing science approaches to advance precision health.9 This approach targets individuals, families, and the health system as a whole. Identifying upstream SDOH at the structural (e.g., policies, services, and environments) and individual levels (e.g., behaviors, epigenetics) are the hallmarks of this new paradigm. Moreover, this approach intends to identify all these factors to develop, test, and implement interventions to address SDOH involved in the CD self-management process, consequently contributing to decreasing health disparities among individuals with CD.9
Health disparities are a difference in the outcome or the incidence/prevalence of disease, earlier onset or faster progression, poorer daily functioning or quality of life, mortality, and burden of certain diseases and other adverse health conditions among disadvantaged groups.8 Health disparities can be further pronounced when characterized by race/ethnicity, income, insurance status, education, occupation, and other social factors.8 Although health disparities are manifested at the individual level, other contexts, such as community and public policies, should be considered when investigating the associations between disparities and clinical outcomes.
Recognizing SDOH is the first step to combating health disparities. SDOH impact self-efficacy, health literacy, social support, health beliefs, motivation, and coping, which are relevant antecedents of self-management.11 Altogether, these factors impact healthcare and education access, the social environment, and health outcomes, affecting individuals’ ability with CD to self-manage their condition. Therefore, a holistic approach to self-management and health disparities should have an integral perspective and include interventions that address these factors together.
The focus of multilevel intervention research is to reduce the health disparities for affected populations.6,7 Therefore, multilevel interventions target the causes of health disparities by focusing on different levels of influence that affect health, including individual (intrapersonal), microsystem (interpersonal), mesosystem (institutional), exosystem (community), and macrosystem (public policy).13 According to Agurs-Collins and colleagues, multilevel intervention research requires action targeting at least two or more levels of influence simultaneously or in close temporal proximity.14 However, the approaches implemented at each level may vary in type and interaction with other levels through synergistic effects.6
For instance, multilevel interventions for self-management among people living with CD can be based on the socio-ecological approach. The model shows that interventions targeting factors at the individual level, such as education related to medication adherence, can be facilitated by upstream factors such as peer educators (interpersonal level) and social media campaigns to impact CD prevention (community level). At the institutional level, increasing testing sites (e.g., for diabetes mellitus, HIV, and hypertension) and promoting changes in the delivery of health services, including follow-up visits for high-risk populations, are effective options to prevent and manage typical CDs. The public policy level may include policy interventions, such as decreasing medication-related costs and increasing access to early diagnosis and treatment. This example covers potential intervention strategies that are complex and beyond the scope of a one-level intervention. In addition, it illustrates possible factors within and between levels that could be addressed through multilevel interventions to reduce health disparities and facilitate CD self-management.
Nurses have a leading role in proposing innovative strategies and developing training opportunities for researchers focused on CD self-management multilevel intervention studies (Table 1). Training programs on research methodology and multimethod approaches are potential areas of improvement in multilevel interventions.14,15 As such interventions address multiple SDOH, they involve intricate levels of design, analysis, implementation, and evaluation.14,15
Nurse researchers have begun to address these challenges and demonstrate the importance of this type of research and have identified a substantial need for additional methodological development to advance the field of health disparities research surrounding self-management of CD.14 In this context, using theoretical frameworks to guide multilevel studies is fundamental.14 The selection of an appropriate framework will support selecting appropriate measures and culturally appropriate interventions. One strategy is to develop interventions based on socio-ecological and bio-behavioral frameworks to identify the mechanisms linking SDOH of CD and health-related outcomes.9)
Another challenge is the adequate selection of methodological approaches to address multilevel intervention research. It would be crucial to provide the resources and strategies to train more nurses on self-management and on utilizing the appropriate statistical techniques available, including the convergence of different research designs.7 Weak analytic plans, inadequate sample sizes, and statistical approaches that do not account for the complexity of data across levels are recognized as limitations when designing multilevel intervention studies.14) Further, strengthening innovative methods through the implementation of expert-led review panels, utilization of common data elements such as standardized data collection tools, and data collection in large populations are strategies for designing multilevel intervention studies.1
The lack of transdisciplinary teams needed to design and evaluate multilevel interventions and the lack of sufficient time and resources are critical challenges to consider.14 Multilevel interventions require significant monetary effort for which researchers and potential grants must be prepared. Multilevel intervention designs must also consider the time frame, which is usually more extensive than single-level interventions, and the larger sample sizes with extended follow-up periods that are often required to see synergistic effects between and within levels.15)
The use of multimethod approaches that integrate quantitative and qualitative research across multiple levels is essential for outcomes of interest in health disparities research.15 Simultaneous data collection using both approaches may provide opportunities to work with small groups and identify specific interlevel processes. It is relevant to mention that community-based participatory research and implementation science approaches can also provide opportunities to execute successful multilevel research among people living with CD.9
Statistical challenges for multilevel studies include analyzing outcomes at each targeted level and examining mediators and moderators involved in these relationships.6,16 Nurse researchers should be cautious about the lack of independence between the variables due to the correlation or clustering of data. Robust research methodology and available techniques' training on advanced analytical approaches and power assessment are necessary to evaluate outcomes.6,16)
A relevant challenge faced by researchers during the implementation of multilevel research is the historical lack of engagement at the public policy level. Vital SDOH disparities often lie within upstream ecological levels.14 Achieving long-lasting improvements to individuals and communities will likely require buy-in from politicians and others at the policy level.7) Adding public policy-level changes to the interventions might result in greater proximal and distal outcomes.
Unfortunately, few detailed reports have described how multilevel interventions have been implemented in a successful way.15 Although multilevel interventions are contextual, most reports fail to report the studies' process adequately.15 This situation can result from uncontrolled and unpredictable changes in contextual variables (e.g., transportation, access to medical care) within and across levels.14 Such changes may be more remarkable among people living with CD because these intervention-relevant factors can be less stable and change over time.14 Consequently, a more detailed report of the setting, site, researchers, context and range of applications is needed.15
Further, training grant reviewers who focus on assessing the accuracy of the setting for this approach and on the empirical evaluation of interventions is critical. Parameters such as fidelity or acceptability can be challenging to maintain in low-resource settings with competing health and welfare priorities.14 Remarkably, the National Institutes of Health in the U.S. emphasizes the need for researchers to describe the feasibility, generalizability, acceptability, sustainability, and accessibility of research findings of available interventions, especially for underserved and vulnerable populations.9
Self-management is a complex phenomenon that implies intersectoral work to target health disparities among disadvantaged groups, especially those living with CD. Given that a broad range of factors make up the CD self-management process, nursing research utilizing multilevel interventions is needed. Despite challenging concerns, multilevel intervention studies may be most effective at reducing health disparities, having a broader public health impact among underserved populations than interventions focusing on only one or two levels. These may help not only to prevent CD but also to encourage and inform individuals on effectively self-managing their CD.
1. The National Institute of Nursing Research (NINR). The NINR strategic plan: Advancing science, improving lives [Internet]. Bethesda, Maryland, United States: NINR and NIH; 2016 [cited 2022 Oct 20]. 77 p. Available from: Available from: https://www.ninr.nih.gov/sites/files/docs/NINR_StratPlan2016_reduced.pdf
The National Institute of Nursing Research (NINR) The NINR strategic plan: Advancing science, improving livesBethesda, Maryland, United StatesNINR and NIH20162022 Oct 207777Available from: https://www.ninr.nih.gov/sites/files/docs/NINR_StratPlan2016_reduced.pdf
2. Centers for Disease Control and Prevention (CDC). About Chronic Diseases [Internet]. United States: CDC; 2021 [cited 2022 Oct 20]. Available from: Available from: https://www.cdc.gov/chronicdisease/about/index.htm
Centers for Disease Control and Prevention (CDC) About Chronic DiseasesUnited StatesCDC20212022 Oct 20Available from: https://www.cdc.gov/chronicdisease/about/index.htm
4. Raghupathi W, Raghupathi V. An empirical study of chronic diseases in the United States: A visual analytics approach. Int. J. Environ. Res. Public Health. 2018; 15(3):431.
W Raghupathi V Raghupathi An empirical study of chronic diseases in the United States: A visual analytics approachInt. J. Environ. Res. Public Health.2018153431431
5. Schulman-Green D, Jaser S, Martin F, Alonzo A, Grey M, McCorkle R, Redeker NS,et al. Processes of self-management in chronic illness. J. Nurs. Scholarsh. 2012; 44(2):136-44.
D Schulman-Green S Jaser F Martin A Alonzo M Grey R McCorkle NS Redeker Processes of self-management in chronic illnessJ. Nurs. Scholarsh.2012442136144
7. Paskett E, Thompson B, Ammerman AS, Ortega AN, Marsteller J, Richardson D. Multilevel interventions to address health disparities show promise in improving population health. Health Aff (Millwood). 2016; 35(8):1429-34.
E Paskett B Thompson AS Ammerman AN Ortega J Marsteller D Richardson Multilevel interventions to address health disparities show promise in improving population healthHealth Aff (Millwood)201635814291434
8. National Institute on Minority Health and Health Disparities (NIMHD). Minority health and health disparities: Definitions and parameters [Internet]. United States: NIMHD; 2021 [cited 2022 Oct 20]. Available from: Available from: https://www.nimhd.nih.gov/about/strategic-plan/nih-strategic-plan-definitions-and-parameters.html
National Institute on Minority Health and Health Disparities (NIMHD) Minority health and health disparities: Definitions and parametersUnited StatesNIMHD20212022 Oct 20Available from: https://www.nimhd.nih.gov/about/strategic-plan/nih-strategic-plan-definitions-and-parameters.html
9. The Strategic Plan Working Group (SPWG). The National Institute of Nursing Research 2022-2026 Strategic Plan [Internet]. United States: National Institute of Nursing Research; 2021 [cited 2022 Oct 20]. Available from: Available from: https://www.ninr.nih.gov/aboutninr/ninr-mission-and-strategic-plan
The Strategic Plan Working Group (SPWG) The National Institute of Nursing Research 2022-2026 Strategic PlanUnited StatesNational Institute of Nursing Research20212022 Oct 20Available from: https://www.ninr.nih.gov/aboutninr/ninr-mission-and-strategic-plan
10. Warnecke RB, Oh A, Breen N, Gehlert S, Paskett E, Tucker KL, et al. Approaching health disparities from a population perspective: The National Institutes of Health Centers for Population Health and Health Disparities. Am. J. Public Health. 2008; 98(9):1608-15.
RB Warnecke A Oh N Breen S Gehlert E Paskett KL Tucker Approaching health disparities from a population perspective: The National Institutes of Health Centers for Population Health and Health DisparitiesAm. J. Public Health.200898916081615
11. Van de Velde D, De Zutter F, Satink T, Costa U, Janquart S, Senn D, De Vriendt P. Delineating the concept of self-management in chronic conditions: A concept analysis. BMJ Open. 2019; 9(7):e027775.
D Van de Velde F De Zutter T Satink U Costa S Janquart D Senn P De Vriendt Delineating the concept of self-management in chronic conditions: A concept analysisBMJ Open.201997e027775
14. Agurs-Collins T, Persky S, Paskett ED, Barkin SL, Meissner HI, Nansel TR, et al. Designing and assessing multilevel interventions to improve minority health and reduce health disparities. Am. J. Public Health. 2019; 109(S1):S86-S93.
T Agurs-Collins S Persky ED Paskett SL Barkin HI Meissner TR Nansel Designing and assessing multilevel interventions to improve minority health and reduce health disparitiesAm. J. Public Health.2019109S1S86S93
15. Stange KC, Breslau ES, Dietrich AJ, Glasgow RE. State-of-the-art and future directions in multilevel interventions across the cancer control continuum. J. Natl. Cancer Inst. Monogr. 2012; 2012(44):20-31
KC Stange ES Breslau AJ Dietrich RE Glasgow State-of-the-art and future directions in multilevel interventions across the cancer control continuumJ. Natl. Cancer Inst. Monogr.20122012442031
16. Charns MP, Foster MK, Alligood EC, Benzer JK, Burgess JF Jr, Li D, McIntosh NM, Burness A, Partin MR, Clauser SB. Multilevel interventions: Measurement and measures. J. Natl. Cancer Inst. Monogr. 2012; 2012(44):67-77.
MP Charns MK Foster EC Alligood JK Benzer JF Burgess Jr D Li NM McIntosh A Burness MR Partin SB Clauser Multilevel interventions: Measurement and measuresJ. Natl. Cancer Inst. Monogr.20122012446777
[2]How to cite this article: Iriarte, E, Cianelli, R, Fernandez-Pineda, M. Multilevel Self-Management in Nursing Research: An Approach to Decrease Health Disparities in Chronic Diseases. Invest. Educ. Enferm. 2023; 41(2):e10. https://doi.org/10.17533/udea.iee.v41n2e10