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Common elements in self-management of HIV and other chronic illnesses: an integrative framework.

ABSTRACT: HIV/AIDS is widely recognized as a chronic illness within HIV care, but is often excluded from chronic disease lists outside the field. Similar to other chronic diseases, HIV requires lifetime changes in physical health, psychological functioning, social relations, and adoption of disease-specific regimens. The shift from acute to chronic illness requires a self-management model in which patients assume an active and informed role in healthcare decision making to change behaviors and social relations to optimize health and proactively address predictable challenges of chronic diseases generally and HIV specifically. This article reviews literature on chronic disease self-management to identify factors common across chronic diseases, highlight HIV-specific challenges, and review recent developments in self-management interventions for people living with HIV (PLH) and other chronic diseases. An integrated framework of common elements or tasks in chronic disease self-management is presented that outlines 14 elements in three broad categories: physical health; psychological functioning; and social relationships. Common elements for physical health include: a framework for understanding illness and wellness; health promoting behaviors; treatment adherence; self-monitoring of physical status; accessing appropriate treatment and services; and preventing transmission. Elements related to psychological functioning include: self-efficacy and empowerment; cognitive skills; reducing negative emotional states; and managing identity shifts. Social relationship elements include: collaborative relationships with healthcare providers; social support; disclosure and stigma management; and positive social and family relationships. There is a global need to scale up chronic disease self-management services, including for HIV, but there are significant challenges related to healthcare system and provider capacities, and stigma is a significant barrier to HIV-identified service utilization. Recognizing that self-management of HIV has more in common with all chronic diseases than differences suggests that the design and delivery of HIV support services can be incorporated into combined or integrated prevention and wellness services.

SUBMITTER: Swendeman D

PROVIDER: S-EPMC2881847 | biostudies-other | 2009 Oct

REPOSITORIES: biostudies-other

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Common elements in self-management of HIV and other chronic illnesses: an integrative framework.

Swendeman Dallas D Ingram Barbara L BL Rotheram-Borus Mary Jane MJ

AIDS care 20091001 10

HIV/AIDS is widely recognized as a chronic illness within HIV care, but is often excluded from chronic disease lists outside the field. Similar to other chronic diseases, HIV requires lifetime changes in physical health, psychological functioning, social relations, and adoption of disease-specific regimens. The shift from acute to chronic illness requires a self-management model in which patients assume an active and informed role in healthcare decision making to change behaviors and social rela ...[more]

PMID: 20024709

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Project description:PURPOSE:Biomarkers as common data elements (CDEs) are important for the characterization of biobehavioral symptoms given that once a biologic moderator or mediator is identified, biologically based strategies can be investigated for treatment efforts. Just as a symptom inventory reflects a symptom experience, a biomarker is an indicator of the symptom, though not the symptom per se. The purposes of this position paper are to (a) identify a "minimum set" of biomarkers for consideration as CDEs in symptom and self-management science, specifically biochemical biomarkers; (b) evaluate the benefits and limitations of such a limited array of biomarkers with implications for symptom science; (c) propose a strategy for the collection of the endorsed minimum set of biologic samples to be employed as CDEs for symptom science; and (d) conceptualize this minimum set of biomarkers consistent with National Institute of Nursing Research (NINR) symptoms of fatigue, depression, cognition, pain, and sleep disturbance. DESIGN AND METHODS:From May 2016 through January 2017, a working group consisting of a subset of the Directors of the NINR Centers of Excellence funded by P20 or P30 mechanisms and NINR staff met bimonthly via telephone to develop this position paper suggesting the addition of biomarkers as CDEs. The full group of Directors reviewed drafts, provided critiques and suggestions, recommended the minimum set of biomarkers, and approved the completed document. Best practices for selecting, identifying, and using biological CDEs as well as challenges to the use of biological CDEs for symptom and self-management science are described. Current platforms for sample outcome sharing are presented. Finally, biological CDEs for symptom and self-management science are proposed along with implications for future research and use of CDEs in these areas. FINDINGS:The recommended minimum set of biomarker CDEs include pro- and anti-inflammatory cytokines, a hypothalamic-pituitary-adrenal axis marker, cortisol, the neuropeptide brain-derived neurotrophic factor, and DNA polymorphisms. CONCLUSIONS:It is anticipated that this minimum set of biomarker CDEs will be refined as knowledge regarding biologic mechanisms underlying symptom and self-management science further develop. The incorporation of biological CDEs may provide insights into mechanisms of symptoms, effectiveness of proposed interventions, and applicability of chosen theoretical frameworks. Similarly, as for the previously suggested NINR CDEs for behavioral symptoms and self-management of chronic conditions, biological CDEs offer the potential for collaborative efforts that will strengthen symptom and self-management science. CLINICAL RELEVANCE:The use of biomarker CDEs in biobehavioral symptoms research will facilitate the reproducibility and generalizability of research findings and benefit symptom and self-management science.

Project description:Background:Type 2 diabetes mellitus has been identified as one of the most challenging chronic illnesses to manage. Since the management of diabetes is mainly accomplished by patients and families, self-management has become the mainstay of diabetes care. However, a significant proportion of patients fail to engage in adequate self-management. A priority research question is how do interventions affect the self-management behaviors of persons with Type 2 diabetes? Purpose/Objectives:The purpose of this integrative review is to provide a summary and critique of interventions that support diabetes self-management in the patient with Type II diabetes mellitus. Design:An integrative review design, with a comprehensive methodological approach of reviews, allowing inclusion of experimental and non-experimental studies. Procedures:A comprehensive search was conducted via Ebscohost using databases of Academic Search Complete, CINAHL, Health Source: Nursing/Academic Edition, MEDLINE, PsycArtiCLES, and PsycInfo. The final number of papers used for this review were: motivational interviewing (6), peer support/coaching (10), problem solving therapy (3), technology-based interventions (30), lifestyle modification programs (7), patient education (11), mindfulness (3), and cognitive behavioral therapy (5). Results:Studies were examined from seventeen countries including a broad range of cultures and ethnicities. While interventions have shown mixed results in all interventional categories, many studies do support small to modest improvements in physiologic, behavioral, and psychological outcome measures. Considerable heterogeneity of interventions exists. The most commonly reported physiologic measure was HbA1c level. Outcome measures were collected mostly at 6 and 12 months. Duration of most research was limited to one year. Conclusions:Research exploring the impact of interventions for self-management has made major contributions to the care of persons with type 2 diabetes, from offering suggestions for improving care, to stimulating new questions for research. However, implications for clinical practice remain inconclusive, and limitations in existing research suggest caution in interpreting results of studies.

Project description:BackgroundStandardized collection of predictors of pediatric sepsis has enormous potential to increase data compatibility across research studies. The Pediatric Sepsis Predictor Standardization Working Group collaborated to define common data elements for pediatric sepsis predictors at the point of triage to serve as a standardized framework for data collection in resource-limited settings.MethodsA preliminary list of pediatric sepsis predictor variables was compiled through a systematic literature review and examination of global guideline documents. A 5-round modified Delphi that involved independent voting and active group discussions was conducted to select, standardize, and prioritize predictors. Considerations included the perceived predictive value of the candidate predictor at the point of triage, intra- and inter-rater measurement reliability, and the amount of time and material resources required to reliably collect the predictor in resource-limited settings.ResultsWe generated 116 common data elements for implementation in future studies. Each common data element includes a standardized prompt, suggested response values, and prioritization as tier 1 (essential), tier 2 (important), or tier 3 (exploratory). Branching logic was added to the predictors list to facilitate the design of efficient data collection methods, such as low-cost electronic case report forms on a mobile application. The set of common data elements are freely available on the Pediatric Sepsis CoLab Dataverse and a web-based feedback survey is available through the Pediatric Sepsis CoLab. Updated iterations will continuously be released based on feedback from the pediatric sepsis research community and emergence of new information.ConclusionRoutine use of the common data elements in future studies can allow data sharing between studies and contribute to development of powerful risk prediction algorithms. These algorithms may then be used to support clinical decision making at triage in resource-limited settings. Continued collaboration, engagement, and feedback from the pediatric sepsis research community will be important to ensure the common data elements remain applicable across a broad range of geographical and sociocultural settings.

Project description:BackgroundSelf-management support interventions are widely accepted in chronic kidney disease (CKD) care; however, interventions rarely consider individual behaviors by incorporating a behavioral theoretical framework. The Theoretical Domains Framework (TDF) can be used to facilitate an understanding of patients and their caregivers' behaviors to successfully self-manage CKD.Objectives(1) To understand behaviors of patients with CKD and their caregivers and identify potential intervention approaches to support CKD self-management and (2) to explore relationships between the 14 TDF domains and CKD self-management.DesignQualitative descriptive study using both content and thematic analysis.SettingPurposive criterion was used to recruit participants from across Canada.PatientsCanadian patients with CKD and their caregivers.MeasurementsFocus groups and telephone interviews using a semistructured interview guide.MethodsWe conducted a secondary analysis of qualitative data collected from focus groups and telephone interviews from July 2017 to January 2018. Two research team members coded the transcribed data to the 14 TDF domains using a modified approach of the Framework Method. We linked the common TDF domains to relevant intervention functions from the Behaviour Change Wheel (BCW) to identify potential intervention approaches. We also identified and mapped relationships between the relevant TDF domains to report emerging themes.ResultsSix focus groups (37 participants) and 11 telephone interview transcripts were analyzed. Five TDF domains that influenced CKD self-management behavior were identified: environmental context and resources, knowledge, beliefs about capabilities, beliefs about consequences, and social influences. Four BCW intervention functions were identified: education, modeling, persuasion, and environmental restructuring. Four emergent themes, shaped by the populated 14 TDF domains, were identified: What does this mean for me? Help me help myself, How does this make me feel? and Who am I?LimitationsThe TDF was not used to design the interview guide; therefore, there may be underrepresentation of some TDF domains relevant for self-management.ConclusionOur findings highlight 5 TDF domains that can influence CKD self-management behavior and 4 possible intervention approaches to influence behavior change in patients with CKD and their caregivers. Emergent themes highlight participants' interpretation of being diagnosed with CKD, their motivations, feelings, values, and altered identity. This work will inform the codesign of a behavior change intervention to enhance patient self-management of CKD.

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Common elements in self-management of HIV and other chronic illnesses: an integrative framework.

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Common elements in self-management of HIV and other chronic illnesses: an integrative framework.

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