Self-management Of Chronic Conditions Research Articles

Exploring the Potential for Technology to Improve Cystic Fibrosis Care Provision

Health care systems increasingly promote self-management of chronic conditions outside of traditional clinical environments, often through technologies which help to support patient self-care and engagement with medical professionals. We investigate specialist care provision in cystic fibrosis (CF), a life-shortening genetic condition, to understand the experiences of those living with it and of professionals who provide such care. Our work highlights how the motivations for the use of technology in this context are often intrinsically linked to the nature of CF itself and the constraints that the condition imposes on care provision. These include the high burden associated with self-management and clinic attendance; the ever-present risk of infection and a subsequent decline in health; and patients who are often very well-informed and actively engaged in their care. In exploring enablers and barriers to technology in this context, we highlight the importance of considering its integration into the chronic care cycles, practices, and structures of CF care.

Medication adherence among people of Indian ethnicity living with chronic disease following migration to Australia

BackgroundThe self-management of chronic conditions is challenging for culturally and linguistically diverse populations who have migrated to predominantly English-speaking countries. There are barriers such as lack of engagement with health services and language difficulties. Despite the importance of medication adherence for people who have migrated, there has been limited research. AimTo investigate medication adherence among people of Indian ethnicity living with chronic diseases who have migrated to Australia. MethodsA cross sectional descriptive study was conducted in 2015, in the setting of one Hindu and two Sikh temples. Approximately 230 paper surveys were distributed, 139 returned. The surveys were anonymous and self-administered, adherence assessed through the validated 8-item Morisky Medication Adherence Scale. FindingsThe majority of participants were born in India (54%), average age 50.1 years, average years living in Australia 17.5. Most participants reported taking their medications 83% of the time, 57% claiming to never miss. However, upon analysis of the survey, most had low adherence rates, particularly those younger and more recently migrated to Australia. DiscussionPoor adherence to medication leads to increased morbidity and death. It is a more significant problem in developing countries like India due to the paucity of health resources and accessibility to healthcare. This may explain the medication adherence practices and perceptions of participants who had more recently migrated to Australia. ConclusionsHealth promotion and education regarding medication adherence in this group, community involvement and supportive workshops are outcomes of this study.

Enabling Self-management of a Chronic Condition through Patient-centered Coaching: A Case of an mHealth Diabetes Prevention Program for Older Adults

ABSTRACT Patient-centered communication (PCC) by healthcare professionals can contribute to enacting and facilitating patients’ self-management of chronic health conditions. This study investigates the emerging patterns of PCC that occur in an mHealth-based diabetes prevention program for older adults. The analysis of user-coach communication data during the 16-week period of the program revealed four PCC strategies employed by coaches: (a) triggering reflections on users’ routinized habits, (b) jointly determining a measurable health goal, (c) facilitating self-evaluations on recent behavior change, and (d) tailoring programs to adapt to users’ lifestyle and health status. To advance these strategies, coaches utilized various mHealth features that helped them (a) engage in data-driven coaching, (b) increase situational awareness of users’ health conditions and routines, (c) provide continuous support to users through regular and spontaneous in-app chats, and (d) foster user autonomy and engagement. The findings extend implications for developing technology-enabled healthcare practice to enhance self-management of chronic illness.

Using projective exercises to identify patient perspectives of living with comorbid type 2 diabetes and asthma.

Patient self-management of a single chronic condition can be challenging, but few studies have examined the emotional impact of living with comorbid conditions and how that differs from a single chronic condition. This study examined patient perspectives of the emotional impact of living with asthma or asthma with comorbid type 2 diabetes (asthma+diabetes). Data were collected from 41 adults (asthma only n = 22, asthma+diabetes n = 19) using semi-structured interviews on two separate online bulletin boards. Respondents engaged in discussions that leveraged two projective exercises: describing their health condition(s) as an animal, and selecting one of eight images that best illustrated how they were living with and managing their health condition(s). Respondents described physical and emotional challenges related to managing asthma or asthma+diabetes. Animal- and image- projective exercises were categorized by response and health condition. Thematic analysis across both projective exercises identified four themes: (1) frustrations with dual diagnosis, (2) juggling the dual diagnosis, (3) anticipating the future, and (4) unpredictability. Projective exercises are one way to elicit feelings about living with chronic conditions. Healthcare providers can improve support for patients with more than one health condition by providing education on how to manage comorbid conditions.

The Continued Use of Mobile Health Apps: Insights From a Longitudinal Study.

BackgroundMobile health (mHealth) apps that support individuals pursuing health and wellness goals, such as weight management, stress management, smoking cessation, and self-management of chronic conditions have been on the rise. Despite their potential benefits, the use of these tools has been limited, as most users stop using them just after a few times of use. Under this circumstance, achieving the positive outcomes of mHealth apps is less likely.ObjectiveThe objective of this study was to understand continued use of mHealth apps and individuals’ decisions related to this behavior.MethodsWe conducted a qualitative longitudinal study on continued use of mHealth apps. We collected data through 34 pre- and postuse interviews and 193 diaries from 17 participants over two weeks.ResultsWe identified 2 dimensions that help explain continued use decisions of users of mHealth apps: users’ assessment of mHealth app and its capabilities (user experience) and their persistence at their health goals (intent). We present the key factors that influence users’ assessment of an mHealth app (interface design, navigation, notifications, data collection methods and tools, goal management, depth of knowledge, system rules, actionable recommendations, and user system fit) and relate these factors to previous literature on behavior change technology design. Using these 2 dimensions, we developed a framework that illustrated 4 decisions users might make after initial interaction with mHealth apps (to abandon use, limit use, switch app, and continue use). We put forth propositions to be explored in future research on mHealth app use.ConclusionsThis study provides insight into the factors that shape users’ decisions to continue using mHealth apps, as well as other likely decision scenarios after the initial use experience. The findings contribute to extant knowledge of mHealth use and provide important implications for design of mHealth apps to increase long-term engagement of the users.

Translational Research – Facilitating Transition of Adolescents With Chronic Conditions to Adult Healthcare and Improving the Quality of Pediatric Nursing Care for Hospitalized Children

Independent self-management of chronic conditions by adolescents and young adults (AYA) is challenging (Christian, 2019) and intensified by adolescent developmental change and associated adolescent risk-taking behaviors. This interplay between adolescent developmental needs and the demands of chronic conditions increases the challenges of chronic condition management by adolescents and their parents (Christian, 2016a, 2016b). Moreover, the transition of adolescents with chronic conditions from pediatric to adult healthcare signifies a shift in relationships marking a change in the level of independence associated with adulthood, which may be difficult for both adolescents and their parents.

Behavior Change Content, Understandability, and Actionability of Chronic Condition Self-Management Apps Available in France: Systematic Search and Evaluation

BackgroundThe quality of life of people living with chronic conditions is highly dependent on self-management behaviors. Mobile health (mHealth) apps could facilitate self-management and thus help improve population health. To achieve their potential, apps need to target specific behaviors with appropriate techniques that support change and do so in a way that allows users to understand and act upon the content with which they interact.ObjectiveOur objective was to identify apps targeted toward the self-management of chronic conditions and that are available in France. We aimed to examine what target behaviors and behavior change techniques (BCTs) they include, their level of understandability and actionability, and the associations between these characteristics.MethodsWe extracted data from the Google Play store on apps labelled as Top in the Medicine category. We also extracted data on apps that were found through 12 popular terms (ie, keywords) for the four most common chronic condition groups—cardiovascular diseases, cancers, respiratory diseases, and diabetes—along with apps identified through a literature search. We selected and downloaded native Android apps available in French for the self-management of any chronic condition in one of the four groups and extracted background characteristics (eg, stars and number of ratings), coded the presence of target behaviors and BCTs using the BCT taxonomy, and coded the understandability and actionability of apps using the Patient Education Material Assessment Tool for audiovisual materials (PEMAT-A/V). We performed descriptive statistics and bivariate statistical tests.ResultsA total of 44 distinct native apps were available for download in France and in French: 39 (89%) were found via the Google Play store and 5 (11%) were found via literature search. A total of 19 (43%) apps were for diabetes, 10 for cardiovascular diseases (23%), 8 for more than one condition in the four groups (18%), 6 for respiratory diseases (14%), and 1 for cancer (2%). The median number of target behaviors per app was 2 (range 0-7) and of BCTs per app was 3 (range 0-12). The most common BCT was self-monitoring of outcome(s) of behavior (31 apps), while the most common target behavior was tracking symptoms (30 apps). The median level of understandability was 42% and of actionability was 0%. Apps with more target behaviors and more BCTs were also more understandable (ρ=.31, P=.04 and ρ=.35, P=.02, respectively), but were not significantly more actionable (ρ=.24, P=.12 and ρ=.29, P=.054, respectively).ConclusionsThese apps target few behaviors and include few BCTs, limiting their potential for behavior change. While content is moderately understandable, clear instructions on when and how to act are uncommon. Developers need to work closely with health professionals, users, and behavior change experts to improve content and format so apps can better support patients in coping with chronic conditions. Developers may use these criteria for assessing content and format to guide app development and evaluation of app performance.Trial RegistrationPROSPERO CRD42018094012; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=94012

Results of a Community-Based Peer Mentor Program for Spinal-Cord Injury: A Pilot Trial

Abstract Date Presented 04/04/19 The purpose of the study was to develop and evaluate the feasibility of a community-based peer mentor program to prevent and manage pressure ulcers and identify untreated depression for 20 individuals with spinal-cord injury. Based on this sample, community-based peer mentoring was feasible with positive outcomes for PU prevention; management of PUs and depression; self-management of chronic conditions; and community reintegration. Primary Author and Speaker: Valerie Hill Additional Authors and Speakers: Shawn Phipps Contributing Authors: Christina Wolfe, David Ponce

Delineating the concept of self-management in chronic conditions: a concept analysis

ObjectivesSelf-management is a concept frequently used within healthcare but lacks consensus. It is the aim of this study to clarify the concept.DesignConcept analysis according to Walker and Avant, comprises eight...

Evaluating the Development Processes of Consumer mHealth Interventions for Chronic Condition Self-management: A Scoping Review.

Innovative, patient-centered mHealth interventions have the potential to help with the burden of chronic conditions. This review aims to describe the development of consumer mHealth interventions for chronic condition self-management. A scoping review methodology was used to search medical databases for eligible reports, published between January 1, 2010, and December 31, 2017, that provided information on consumer mHealth interventions for respiratory disease, cancer, diabetes, and cardiovascular disease. Twenty-one reports were included, representing the development of 14 mHealth interventions. Most were developed collaboratively, using user-centered and participatory design processes. Predesign work involved a thorough needs assessment, and redesign processes were described as iterative, engaging with usability testing and design improvements. Tensions from competing priorities between patients and healthcare professionals were uncovered, with the intention to develop a useful product for the patient while ensuring clinical relevance. This review provides clear evidence that consumer mHealth interventions are developed inconsistently even when engaging with participatory or user-centered design principles, sometimes without direct involvement of patients themselves. Further, the incomplete description of the development processes presents challenges to furthering the knowledge base as healthcare professionals need timely access to quality information on mHealth products in order to recommend safe, effective consumer mHealth interventions.

Evaluation design of the Social Engagement Framework for Addressing the Chronic-disease-challenge (SEFAC): a mindfulness-based intervention to promote the self-management of chronic conditions and a healthy lifestyle

BackgroundThe Social Engagement Framework for Addressing the Chronic-disease-challenge (SEFAC) project intends to empower citizens at risk of or with type 2 diabetes (T2DM) and/or cardiovascular disease (CVD) to self-manage their chronic conditions through the SEFAC intervention. The intervention combines the concepts of mindfulness, social engagement and information and communication technology support, in order to reduce the burden of citizens with chronic conditions and to increase the sustainability of the health system in four European countries.MethodsA prospective cohort study with a 6-month pre-post design will be conducted in four European countries: Croatia, Italy, the Netherlands and the United Kingdom. A total of 360 community-dwelling citizens ≥50 years of age will be recruited; 200 citizens at risk of T2DM and/or CVD in the next 10 years (50 participants in each country) and 160 citizens with T2DM and/or CVD (40 participants in each country). Effects of the intervention in terms of self-management, healthy lifestyle behavior, social support, stress, depression, sleep and fatigue, adherence to medications and health-related quality of life will be assessed. In addition, a preliminary cost-effectiveness analysis will be performed from a societal and healthcare perspective.DiscussionThe SEFAC project will further elucidate whether the SEFAC intervention is feasible and (cost-) effective among citizens at risk of and suffering from T2DM and/or CVD in different settings.Trial registrationISRCTN registry number is ISRCTN11248135. Date of registration is 30/08/2018 (retrospectively registered).

Consider the root of the problem: increasing trainee skills at assessing and addressing social determinants of health.

National pediatrics guidelines recommend screening all patients for unmet social needs to improve self-management of chronic conditions and health outcomes and to reduce costs. Practitioners involved in training pediatric clinicians need to understand how to prepare pediatric clinicians to effectively conduct social needs screening and where current training methods fall short. Our qualitative study investigated whether using "standardized" patients during trainee education improved trainees' ability to assess and address adolescent patients' social needs. Vulnerable adolescents should be prioritized in social determinants of health translational research because increased risk taking and emotionality may predispose this population to lower self-esteem and self-efficacy. We trained 23 adolescents (aged 16-18) recruited from an urban health-career education program to act as standardized patients (SPs). Two cohorts of nurse practitioner trainees (n = 36) enrolled in a simulation where the patient-actor presented with a minor chief complaint and related a fabricated complex social history. Pre-encounter, Cohort 1 (n = 18) reviewed psychosocial screeners; Cohort 2 (n = 18) were given in-depth information about social needs before meeting patients. SPs gave individualized feedback to trainees, and self-reflections were analyzed using thematic analysis. In Cohort 1, trainees identified some social needs, yet few intervened. Trainees expressed discomfort in: (a) asking socially sensitive questions and (b) triaging patient versus clinician priorities. Cohort 2 demonstrated improvements compared to Cohort 1 in identifying needs yet had similar difficulty with organization and questioning. Trainees were able to utilize a lower-stakes interaction with patient-actors to raise awareness regarding a patient's sensitive needs and to organize care surrounding these patient-centered concerns.

Multi-model Short-term Prediction Schema for mHealth Empowering Asthma Self-management

Ambient intelligence and machine learning techniques are widely proposed by various eHealth and mHealth applications for home-care and self-management of various chronic health conditions. Their adoption for self-management of asthma, a multifactorial chronic disease, requires evaluation and validation in a real-life setups along with optimization at patient level to personalize predictions with respect to asthma control status and exacerbation risk. The current work proposes a novel short-term prediction approach for asthma control status, considering training of multiple classification models for each monitored parameters along with necessary pre-processing methods to enhance robustness and efficiency. The machine learning algorithms considered in this study are the Support Vector Machines, the Random Forests, AdaBoost and Bayesian Network. The Random Forests and Support Vector Machines classifiers demonstrated overall superior performance for the case studies (models) considered.

Pengaruh Penerapan Chronic Condition Self-Management (CCSM) terhadap Kepatuhan Pengobatan Pasien Hipertensi Peserta Prolanis BPJS di Malang Jawa Timur

Hypertension is often called the silent killer because most people do not realize that he had hypertension. The success of the treatment is not only influenced by the quality of health services, attitudes/skills of its officers, the pattern of life of patients and their families but also influenced by patient adherence to treatment. Chronic Condition Self-Management (CCSM) is a guideline that was developed to help nurses, and health professionals on the client facilitate self-management of chronic conditions by providing a framework for effective interaction and management strategies. This study aims to determine the effect of the application of CCSM on treatment compliance. This research was conducted in the DPS dr. Suhartatik Gondang Legi in February - July 2017. The study design used was Quasi-Experimental, with pre-test and post-test with one group design. Total population 35 with a sample of 20 respondents into an intervention group, with a technique purposive sampling. The dependent variable is CCSM and independent variable and treatment compliance. Instruments using a checklist sheet and medication adherence questionnaire sheet. Based on statistical test paired t-test showed the p-value 0.000 (p <0.05), it can be concluded that there is a significant effect of the application of CCSM on treatment compliance. Based on these results, it is expected the nurse can useCCSM as a health promotion program to improve medication adherence in patients with chronic hypertension.

Enacting chronic illness with and through digital media: a feminist new materialist approach

ABSTRACT Few studies have sought to examine the ways in which people with chronic health conditions engage with digital health technologies across the full spectrum that is currently available. In this article, we present four illustrative vignettes based on interviews with women with chronic conditions who participated in the Australian Women and Digital Health Project. The vignettes show how these women used mobile apps and online resources to find and share information and support, monitor their bodies and health states and self-manage their conditions. We draw on the theoretical approach of feminist new materialism to identify the affordances (of human bodies and of technologies), relational connections, affective forces and agential capacities generated with and through our participants’ use of digital media. Our study highlights the important role played by both digital and non-digital encounters and actors. The vignettes demonstrate the complexities of entanglements between human sensory embodied experiences, face-to-face encounters with other people and digitally-mediated experiences and social networks in configuring and enacting lay expertise and self-management of chronic health conditions. The vignettes show ‘what a body can do’ when people living with chronic illnesses are actively engaged with the possibilities of digital health technologies available to them. They also highlight the limitations of some digital media – particularly apps – and the ways in which the design of these applications can fall short of providing promised benefits to members of minority and marginalised social groups such as people with chronic illnesses.

Managing oneself or managing together? Parents’ perspectives on chronic condition self-management in Dutch pediatric rehabilitation services

Purpose: With the growing attention in pediatric rehabilitation services for supporting self-management, the need increases for more shared understanding of the concept. The aim of this study was to explore parent activation, associated factors of- and underlying perceptions on parental self-management of parents of children with chronic conditions.Materials and methods: Using a mixed-methods strategy, first variations in self-management behaviors, motivation and perceived autonomy support were assessed with a cross-sectional survey among parents of children with chronic conditions (N = 239). Statistical analysis involved descriptive statistics and univariate analysis of variance. The survey was followed by 18 in-depth interviews with parents. Thematic analysis was used to recognize relevant topics in the qualitative data.Results: In the survey most parents reported being active self-managers. Nevertheless, only one third persisted in self-management when under stress. Autonomous motivation was strongly associated with parental self-management. In the interviews, parents mentioned attuning with professionals and finding balance as important aspects of self-management. To facilitate self-management, professionals were expected to have expert knowledge, be engaged and empathic.Conclusion: From the perspective of parents, self-management should be viewed as a collaborative effort in which they are supported by professionals, rather than having to manage it “by themselves”.Implications for rehabilitationTo facilitate self-management, parents expect professionals to have expert knowledge and additionally show interpersonal competences as openness, engagement and empathy.Motivating parents may facilitate their level of self-management regarding the care for their child with a chronic disorder.Good communication and collaboration with professionals appear to be key aspects of parental self-management.Parents expect pediatric rehabilitation teams to tune their services to the needs, desires and expectations of parents to support them in “self-managing” the care for their child.

Living with multimorbidity? The lived experience of multiple chronic conditions in later life.

Multimorbidity is defined biomedically as the co-existence of two or more long-term conditions in an individual. Globally, the number of people living with multiple conditions is increasing, posing stark challenges both to the clinical management of patients and the organisation of health systems. Qualitative literature has begun to address how concurrency affects the self-management of chronic conditions, and the concept of illness prioritisation predominates. In this article, we adopt a phenomenological lens to show how older people with multiple conditions experience illness. This UK study was qualitative and longitudinal in design. Sampling was purposive and drew upon an existing cohort study. In total, 15 older people living with multiple conditions took part in 27 in-depth interviews. The practical stages of analysis were guided by Constructivist Grounded Theory. We argue that the concept of multimorbidity as biomedically imagined has limited relevance to lived experience, while concurrency may also be erroneous. In response, we outline a lived experience of multiple chronic conditions in later life, which highlights differences between clinical and lay assumptions and makes the latter visible.

Characterization of Brain Signatures to Add Precision to Self-Management Health Information Interventions.

Although many of the proposed mediating processes of self-management interventions are operationally defined as cognitive processes (e.g., acquiring and using information, self-efficacy, motivation, and decision-making), little is known about their underlying brain mechanisms. Brain biomarkers of how people process health information may be an important characteristic on which to individualize health information to optimize self-management of chronic conditions. We describe a program of research addressing the identification of brain biomarkers that differentially predict responses to two types of health information (analytic focused and emotion focused) designed to support optimal self-management of chronic conditions. We pooled data from two pilot studies (N = 52) that included functional magnetic resonance imaging during a specially designed, ecologically valid protocol to examine brain activation (task differentiation) associated with two large-scale neural networks-the Analytic Network and the Empathy Network-and the ventral medial prefrontal cortex while individuals responded to different types of health information (analytic and emotional). Findings indicate that analytic information and emotional information are processed differently in the brain, and the magnitude of this differentiation in response to type of information varies from person to person. Activation in the a priori regions identified in response to both analytic and emotion information was confirmed. The feasibility of obtaining brain imaging data from persons with chronic conditions also is demonstrated. An understanding of brain signatures related to information processing has potential to assist in the design of more individualized, effective self-management interventions.

A concept analysis of adolescent friendship.

The purpose of this study is to provide a definition of adolescent friendship to aid in nursing research and practice. Friendships are an essential part of adolescence and can have significant impacts on health outcomes. Adolescent friendships are associated with decreased depression, suicidal ideation, anxiety, and improved self-management of chronic conditions. However, the concept of friendship has not been well defined in the nursing literature, especially in the context of adolescents. Walker and Avant's method of concept analysis was used as a framework for this analysis. Seventeen articles were reviewed, representing a variety of disciplines including child development, psychology, sociology, behavioral sciences, medicine, education, public health, and nutrition. Additional sources included online definitions of friendship. After reviewing the sources, the author identified attributes, antecedents, and consequences. Model case, a borderline case, and contrary case were developed and empirical referents identified. The analysis resulted in a clear definition of adolescent friendship, containing the attributes of support, intimacy, affection, trust, ability to manage conflict, and time. Understanding the attributes, antecedents, and consequences of adolescent friendships will help nurses in assessing and supporting these influential relationships during this important development period.

A descriptive, cross-sectional study examining treatment burden in people living with HIV

Aim(1) describe the percentage of people living with HIV (PLWH) experiencing high levels of treatment burden who are at risk for self-management non-adherence, and (2) examine the relationship between known antecedent correlates (the number of chronic conditions, social capital, and age) of self-management and treatment burden while controlling for sample socio-demographics. BackgroundChronic condition self-management is key to maintaining optimal health in the aging population of PLWH. Despite the efforts of providers, patients, and caregivers, self-management non-adherence is still a factor contributing to poor chronic condition self-management and subsequent poor health outcomes. Recent research has identified treatment burden as a risk factor of poor chronic disease self-management adherence. MethodCross-sectional, secondary analysis of a sub-sample of 103 community dwelling, men and women diagnosed with HIV/AIDS derived from a larger parent study examining physical activity patterns in PLWH. ResultsParticipants reported an overall low level of treatment burden (M = 22.84; SD = 24.57), although 16% (n = 16) of the sample indicated experiencing high treatment burden. The number of chronic conditions (r = 0.25; p ≤ .01) and social capital (r = −0.19; p = .03) were significantly correlated with treatment burden. Multivariate analysis testing known antecedent correlates of treatment burden was statistically significant (p < .05), but only explained 8% of treatment burden's variance. ConclusionFindings have implications for nursing care of PLWH demonstrating a subset of PLWH experience high treatment burden related to chronic condition self-management. Findings also identify characteristics of PLWH who may be at high risk for treatment burden and subsequent self-management non-adherence.