Chronic Illness Self-management Research Articles

The Promise of Small Data for Telemedicine in Chronic Condition Management: A Real-World Case Series

Connected care is defined as the “real-time, electronic communication between a patient and a provider, including telehealth, remote patient monitoring, and secure email communication between clinicians and their patients” (Alliance of Connected Care). Connected care can create a high-value interaction strategy with patients when it makes thoughtful use of commercially available digital health technologies with demonstrated both clinical and economic effectiveness. Karantis360™, is a home sensor technology that enables real-time tracking, data analytics and predictive care for personal (at home) care powered by IBM Watson Health. IndividuALLyticsTM is a telemedicine platform driven by a patent-pending an N-of-1 analytical engine and related digital dashboards that provides individual, patient-level evaluation of treatment response. The underlying technology combines disparate digital health technology data with the best evidence-base guidelines with N-of-1 methodology. The output allows for creation of personalized treatments empirically tested at the patient-level over time (aka over the course of care). When aggregated both within and across persons, the time-ordered data can build predictive pathways of behavior and ensure the relevant care and medical treatments are in place to support effective medical and self-management of chronic illness. This case-series report describes the implementation of a joint home sensor technology (big data) and an N-of-1 analytic engine (small data) with three elderly consented volunteer customers-patients of Karantis360™. Each person underwent successive, 2-week behavioral change treatment phases to determine usability, utility regarding medical and self-management and any proximal effects on health risks.

Promotion of Self-Management of Chronic Disease in Children and Teenagers: Scoping Review.

Background: The scientific literature describes that self-management of chronic illness leads to improved health outcomes. Knowledge about interventions that promote self-management behaviors in children and teenagers has been poorly clarified. This study aims to map, in the scientific literature, the nature and extent of interventions that promote self-management of chronic disease, implemented and evaluated in contexts of health care provided to children and teenagers. Methods: The guidelines proposed by the Joanna Briggs Institute were followed. The survey was conducted in June 2021, with access to international databases and gray literature, in Portuguese, English, French, and Spanish. Results: Interventions that promote self-management of children and teenagers can be developed through a local contact or through technological means of support for health care. The use of online supports, such as applications or communication platforms, should be parameterized with health professionals, according to the needs of users. Conclusions: The acquisition of self-management skills in pediatrics is a process supported by the family, health professionals and the community, in which the nurse, in partnership, can promote communication and health education through cognitive strategies, behavioral programs included in physical or online programs, adjusted to the patients’ needs.

Community sharing: Contextualizing Western research notions of contamination within an Indigenous research paradigm.

Báa nnilah is a chronic illness self-management program designed by and for the Apsáalooke (Crow) community. Arising from a collaboration between an Indigenous nonprofit organization and a university-based research team, Báa nnilah's development, implementation, and evaluation have been influenced by both Indigenous and Western research paradigms (WRPs). Báa nnilah was evaluated using a randomized wait-list control group design. In a WRP, contamination, or intervention information shared by the intervention group with the control group, is actively discouraged as it makes ascertaining causality difficult, if not impossible. This approach is not consonant with Apsáalooke cultural values that include the encouragement of sharing helpful information with others, supporting an Indigenous research paradigm's (IRP) goal of benefiting the community. The purpose of this paper is to address contamination and sharing as an area of tension between WRP and IRP. We describe how the concepts of contamination and sharing within Báa nnilah's implementation and evaluation are interpreted differently when viewed from these contrasting paradigms, and set forth a call for greater exploration of Indigenous research approaches for developing, implementing, and evaluating intervention programs in Indigenous communities. (Improving Chronic Illness Management with the Apsáalooke Nation: The Báa nnilah Project.: NCT03036189), ClinicalTrials. gov: NCT03036189).

Influence of chronic illness resources on self-management and the mediating effect of patient activation among patients with coronary heart disease.

AimThe aim of this study was to explore the relationship between chronic illness resources, patient activation and self‐management behaviour among middle‐aged and older patients with CHD.DesignA cross‐sectional, descriptive correlational study was performed.MethodsA convenience sample of 296 participants were recruited in Tianjin, China. Data were collected by using the Chronic Illness Resource Survey (CIRS), Patient Activation Measure (PAM) and Coronary Artery Disease Self‐Management Scale (CSMS). Descriptive statistics and Pearson's correlation analysis were used to data analysis. Linear regression analysis was performed to explore the mediating role of patient activation.ResultsThe results showed that chronic illness resources and patient activation were significantly and positively correlated with self‐management behaviours (p < .01). Patient activation had a partial intermediary between chronic illness resources and self‐management behaviours, and the mediation effect was 0.230. Patient activation mediated the relationship between chronic illness resources and self‐management. In order to improving the self‐management behaviours, medical staff need to pay attention to the importance of chronic illness resources and patient activation.

Trust in mutual aid group members, self-management of chronic illness, and well-being among young patients with chronic illness in Hong Kong

While trust has been widely identified as a vital protective factor for individuals’ well-being, less attention has been paid to the particularized trust of mutual aid group members and its impact on the self-management and well-being of young patients with chronic illness (PWCIs). The present study aims to explore the effect of trust in mutual aid group members on young PWCIs’ well-being and the mediating role of self-management in such an association. Data were collected through a stratified random sampling; 391 young PWCIs from mutual aid groups in Hong Kong were recruited as the research sample and participated in both the baseline and 12-month follow-up surveys. Our findings indicated that the effects of trust on well-being outcomes (accomplishment, social connectedness, and depression) were fully mediated by treatment adherence and health maintenance efficacy, but not by coping with stigma. The empirical findings provide practical implications for intervention programs in relation to promoting the self-management and well-being of young PWCIs.

Grieving a disrupted biography: an interpretative phenomenological analysis exploring barriers to the use of mindfulness after neurological injury or impairment

BackgroundMindfulness has demonstrated strong utility for enhancing self-management and health outcomes in chronic illness. However, sensation-focused mindfulness techniques may not be appropriate for clinical populations with neurological injury. This study aimed to identify how expert mindfulness teachers with sensory loss/impairment naturalistically adapt and experience mindfulness. We aimed to highlight the rationale for and barriers to mindfulness practice when living with sensory loss.MethodsA qualitative, semi-structured interview design was used, analysed via Interpretative Phenomenological Analysis (IPA). Eight (5 females, 3 males) mindfulness teachers with neurological injury were recruited via a national registry of Mindfulness for Health teachers. Interviews (range: 50–93 min) were completed, transcribed verbatim and analysed idiographically for descriptive, linguistic and conceptual themes, before a cross-case analysis was completed.ResultsTwo superordinate themes were identified: (1) Overcoming a disrupted biography; and (2) Proactive self-management. These themes considered the challenge of reconciling, through grief, a past health status with the present reality of living with sensory loss due to Spinal Cord Injury, Multiple Sclerosis or Functional Neurological Disorder. Mindfulness was experienced as a method by which proactive choices could be made to maintain control and autonomy in health, reducing perceptions of suffering, psychological distress, cognitive reactivity and rumination.ConclusionsMindfulness was found to support the self-management of health after neurological injury/impairment. Mindfulness meditation presented an initial challenge as trauma and grief processes were (re-)activated during mindfulness sessions. However, mindfulness was found to support the resolution of these grief processes and encourage adaptive approach-based coping and acceptance of health and neurological impairment/injury.

Factors Related to Iron Chelation Therapy Adherence in Young Adults with Thalassemia: A Framework from the Patient Perspective

Background: Adherence to iron chelation therapy (ICT) is essential to the health and survival of patients with transfusion-dependent thalassemia. In recent years, the advent of oral chelators has improved the ease with which ICT is administered. Despite these changes, adherence to ICT among patients with thalassemia remains suboptimal. Age has been found to be associated with ICT adherence, and young adult patients have been found to be at higher risk of nonadherence compared to other age groups. Young adulthood is a critical transitional stage, both with regards to life pursuits, as well as to clinical and self-management of chronic illness. Consequently, there is a need to study the underlying factors related to adherence within the context of young adulthood.Objective: To identify the barriers and promoters to ICT adherence from the perspective of young adult patient with thalassemia.Methods: Ten transfusion-dependent patients with thalassemia (Table 1) were recruited at UCSF Benioff Children's Hospital Oakland (BCHO) to participate in individual interviews. Participants were ages 18 to 35 years and prescribed some type of ICT. A semi-structured interview guide was developed based on existing literature, and participants were asked questions regarding their general experience of thalassemia, the transition from childhood to adulthood as related to thalassemia, and promoters and barriers to ICT adherence. Interviews were audio-recorded, transcribed, and imported into NVivo software for analysis using grounded theory methodology. Codes were developed iteratively and classified into overarching themes, which were then mapped to form a cohesive framework.Results: The young adult patients described thalassemia as comprehensively impactful on their lives. Consequently, patient narratives focused largely on the minimization of the thalassemia impact , which was an overarching driver both to adherence and nonadherence to ICT; nonadherence resulted from a conception of ICT administration as a departure from normalcy, while adherence resulted from a conception of ICT administration as a necessary facilitator of normalcy. Conceptions of chelation as a necessity to normalcy was informed by four driving factors: (1) a high degree of integration of thalassemia into participants' lives, (2) a low degree of perceived burden from the chelation process , (3) a view of the chelation process as independent or self-motivated , and (4) an effective understanding of ICT necessity to prevent iron overload. The inverse of each of these four factors promoted a view of ICT as a hindrance to normalcy which facilitated nonadherence. The driving factors in turn were found to be influenced by external mediators including chelation type/characteristics, degree of chelation habituation, life stage characteristics, clinical support, and parental involvement/support.Conclusion: This study provides a framework that identifies four driving factors whose alignment is necessary for ICT adherence. By mapping how these core factors are influenced by external mediators, this framework provides an understanding of key indicators and pathways to adherence and nonadherence for young adults with thalassemia. For instance, the relative ease of oral chelators and increased habituation of chelation may decrease the perceived burden of the chelation process, improving adherence. Extensive parental involvement in managing chelation during childhood may be more complexly related to adherence - decreasing the burden of the chelation process, yet hindering the perception the patients' view of chelation as an independent process. Clinicians may play a crucial role in facilitating perception of ICT as necessary and efficacious by tracking iron status with patients - an effective motivator that also appeals to patients' desire to view adherence as a largely independent and self-motivated process. Furthermore, clinical staff like health navigators or community health workers who lower systemic barriers to care may be influential in enabling integration of thalassemia into daily life, promoting adherence. Ultimately this framework provides guidance for future empirical and interventional studies addressing ICT adherence. Further research is also needed to explore perceptions and practices regarding ICT adherence from the perspective of parents and health care providers of young adults with thalassemia. [Display omitted] DisclosuresNo relevant conflicts of interest to declare.

Nurse Faculty Experiences Teaching Chronic Illness Self-Management Concepts: An Exploratory Study.

The aim of the study was to explore how nurse faculty prepare students to teach chronic disease self-management. Self-management addresses patient activities in response to a change in baseline health. Evidence suggests nurses may not be educated on how to engage patients in chronic disease self-management. This qualitative study used semistructured interviews to explore experiences of 13 nurse faculty across three universities in preparing nursing students to address self-management concepts for adults living with chronic disease. Three themes emerged from 104 identified significant statements: conceptualizing and valuing chronic disease self-management in nursing education, making chronic disease self-management fit, and sharing the impact of health care reform on chronic disease care. Self-management is regarded as highly complex and evolving. As such, nursing education curricula must also evolve to emphasize successful approaches to preventing chronic disease and incorporating chronic disease self-management and behavior modification in the curriculum.

Whole Health Action Management: A Randomized Controlled Trial of a Peer-Led Health Promotion Intervention.

Adults with serious mental illness have high rates of general medical comorbidity and encounter challenges in dealing with multiple health conditions. Chronic illness self-management programs may help them more effectively cope with comorbid illnesses, especially when instructors are certified peer specialists. This study assessed the longitudinal effectiveness of a peer-delivered health promotion program. Community mental health program clients in Georgia and Illinois with serious mental illness and health impairments were randomly assigned to receive either Whole Health Action Management (WHAM), a medical illness self-management program led by peer specialists, or care as usual, resulting in a sample of N=139 (WHAM N=68, control N=71). Assessments were conducted at study baseline and at 3 and 6 months. Generalized estimating equations were used to examine change over time in the primary outcome of patient activation and secondary outcomes of general health, hope, and employment. Longitudinal analysis indicated that compared with control participants, WHAM participants demonstrated significantly greater improvement over time in patient activation for health care. Intervention participants also demonstrated greater improvement in their self-assessed general health, overall hopefulness, and paid employment. Reactions to the WHAM program were positive, with 97% reporting being very or somewhat satisfied, and almost two-thirds (63%) reporting that their health was better than before they joined the program. The WHAM program improved patient activation, perceived general medical health, hopefulness, and likelihood of paid employment among people with serious mental illness and co-occurring medical conditions. Results suggest that peer-delivered health self-management education is effective and well received by participants.

Development and validation of the chronic illness self-management (CISM) scale: Data from a young patient sample in Hong Kong

The increasing prevalence of early-onset chronic illnesses is a major global health challenge. Effective chronic illness self-management (CISM) is crucial in improving the quality of life of patients. This study aims to develop a holistic instrument to measure CISM among the young patient population in Hong Kong, which has rarely been investigated in past studies. A total of 497 individuals aged 12–45 years with chronic illness completed the questionnaire. A confirmatory factor analysis (CFA) resulted in a four-factor model. The four factors include treatment adherence, health maintenance efficacy, self-stigma, and coping with stigma. The final CFA results indicated good model fit (RMSEA = 0.069, CFI = 0.907, TLI = 0.894, and SRMR = 0.059) and good factor loadings (0.636–0.843). Subgroup consistency across the gender, age, illness category, and illness severity subsamples was demonstrated. Correlation between the CISM factors and emotional and behavioral functioning variables showed good concurrent validity. The results reflected unique CISM characteristics in Hong Kong under the influence of Chinese culture and the city’s healthcare system. The development of this scale sheds light on how healthcare professionals can assess the CISM of young patients in a holistic manner.

Interdisciplinary Group Visits to Improve Outcomes in Older Adults

This study examined the effectiveness of group visits in improving self-management of chronic illness in a sample of older adults. A 1-group pretest-posttest design was used. The outcome measures of interest were self-management ability, behavior changes, perceived health status, and overall satisfaction. Data from outcome measures suggested that the group visits improved self-management ability and healthy behaviors among patients. Group visits can be an effective method for improving self-management behaviors and overall health for older adults with chronic illness.

School Nurses' Role in Self-Management, Anticipatory Guidance, and Advocacy for Students With Chronic Illness.

This article offers tangible support for school nurses to understand, recognize, and integrate self-management promotion, anticipatory guidance, and advocacy into practice. The article utilizes the chronic condition of asthma as a case exemplar, but many of the recommendations apply to other aspects of chronic illness self-management promotion. School nurses are in an ideal position to advocate for students and families and to support evidence-based self-management promotion. In the school setting, gaps currently exist regarding best practices for the promotion of self-management and anticipatory guidance for children with chronic illnesses. Future interventions within school settings should focus on multisystem level collaboration with care coordination efforts between providers and social support systems, internal and external, to the school system. These policies and this resource development will ultimately support the promotion of self-management for children with chronic illness in the school environment and maximize health outcomes.

Educational needs of chronic kidney disease patients who presented to tengku ampuan afzan hospital: Preliminary findings.

Knowledge limitation is a major cause of the increasing number of chronic kidney disease (CKD) patients in Malaysia and the world. Nurses are responsible for identifying the patients' needs to come up with appropriate discharge plans which might include educational activities. The objective of this study was to determine the baseline information (socio- demographic background, as well as medical and lifestyle histories), along with educational needs of CKD patients. A total of 116 CKD patients who attended the Nephrology Clinic of Hospital Tengku Ampuan Afzan were recruited. Patients who fulfilled the inclusion criteria were selected between April and May 2017. Data were obtained via semi-guided questionnaires; the patients were given enough time to complete the required items. The CKD educational needs' assessment consisted of seven domains: general information, chronic illness management, complications, self-management, medications, treatment, and financial status. Majority of the patients were men (53.4%), aged 54.65 ± 16.49 years, secondary school-finishers (49.1%), and jobless (48.3%). In terms of medical and life-style histories, most patients were diagnosed with end-stage renal disease (51.7%), hypertension (96.6%), diabetes (51.7%), and anemia (25.9%). The patients were interested to know the complications of kidney disease (57.8%), management of diseases like hypertension (58.6%), complications like edema (55.2%), indications for medication (73.3%), self-management or fluid control (37.9%), hemodialysis (37.1%), and financial status (21.6%). Thus, strengthening patient education strategies in the clinics, hospitals, and community settings should be given due attention by relevant healthcare professionals.

Are Common Sense Model constructs and self-efficacy simultaneously correlated with self-management behaviors and health outcomes: A systematic review

This systematic review answered two questions among adults with chronic conditions: When included in the same statistical model, are Common Sense Model constructs and self-efficacy both associated with (1) self-management behaviors and (2) health outcomes? We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and included 29 articles. When included in the same statistical model, Common Sense Model constructs and self-efficacy were both correlated with outcomes. Self-efficacy was more consistently associated with self-management behaviors, and Common Sense Model constructs were more consistently associated with health outcomes. Findings support the continued inclusion and integration of both frameworks to understand and/or improve chronic illness self-management and outcomes.

Daasachchuchik: A Trauma-Informed Approach to Developing a Chronic Illness Self-Management Program for the Apsáalooke People.

In Montana, American Indians with chronic illnesses (CIs) die 20 years earlier than their White counterparts highlighting an urgent need to develop culturally consonant CI self-management programs. Historical and current trauma places Indigenous peoples at increased health risk relative to others, and negatively influences CI self-management. The Apsáalooke Nation and Montana State University worked together to develop and implement a trauma-informed CI self-management program to improve the Apsáalooke community's health. This paper describes the origins and development of the trauma-informed components of the program. Using community stories and a literature review of trauma-informed interventions, partners co-developed culturally consonant trauma materials and activities grounded in community values and spirituality. Trauma-informed content was woven throughout three intervention gatherings and was the central focus of the gathering, Daasachchuchik ('Strong Heart'). Apsáalooke ancestors survived because of their cultural strengths and resilience; these cultural roots continue to be essential to healing from historical and current trauma.

Adult Cochlear Implant Recipients' Perspectives on Experiences With Music in Everyday Life: A Multifaceted and Dynamic Phenomenon.

BackgroundCochlear implants (CIs), which have been designed primarily to support spoken communication of persons with severe to profound hearing loss, are highly effective in supporting speech perception in quiet listening conditions. CI users as a group achieve significantly poorer perception and appraisal of music, and speech perception is compromised when background music is present, though outcomes vary considerably across recipients. A number of factors have been identified that contribute to variable music listening experiences, but many questions remain, particularly regarding experiences in everyday life from the perspective of CI users.PurposeThe purpose of this study was twofold: The first aim was to explore the perspectives of adult CI recipients regarding two experiences with music in everyday life: purposeful music listening and background music that competes with spoken conversation. The second aim was to develop a framework of everyday music experiences based upon CI perspectives that could inform future rehabilitative practices and research initiatives.MethodsQualitative and patient-engaged research methodologies were used to emphasize the perspectives of the CI users. Participants included 40 experienced adult CI users ranging in age from 19 to 81 enrolled in 13 CI centers. Participants completed on-line semi-structured open-ended questionnaires regarding purposeful music listening and background music in conjunction with spoken communication. Responses were analyzed using an iterative inductive coding process consistent with grounded theory methodology. The interrelated themes that emerged from the data were then organized into a model synthesizing components from models on music response and self-management for persons with chronic health conditions.OutcomesData analyses informed the development of a Dynamic Problem Solving Model for Management of Music Listening Environments adapted from Hill-Briggs (2003) Problem Solving Model of Chronic Illness Self-Management. Key findings were: (1) Music listening is a dynamic, multifaceted experience; satisfactory listening depended upon optimal combinations of factors; (2) Music listening is effortful, but the extent of satisfaction is influenced by expectations and self-management of the situation; (3) CI users have limited access to resources for optimizing music experiences. Many CI users would consider rehabilitation, but level of commitment and priorities differ across CI users.

MHEALTH PROTOTYPE AND PILOT PROTOCOL TO ENHANCE SOCIAL SUPPORT FOR PERSONS LIVING WITH DEMENTIA

An emerging component of mHealth is the use of tailored mobile applications (app) to facilitate self-management of chronic illnesses, including the mapping of social networks to assist adults living with chronic illnesses to help them be able to identify sources of social support. The purpose of this study is to describe a prototype app to support persons living with dementia (PLWD) in the community and their informal caregivers to map social networks and identify sources of emotional, instrumental, informational, and appraisal of social support. Adapting the Network Canvas open-source software and drawing upon a previously-developed mobile application for adults to self-manage chronic illnesses, we share the key specifications, including health care provider output, preliminary end user feedback, and the pilot protocol designed to test the feasibility. Findings illustrate the importance of leveraging social network data in novel ways to enhance self-management and well-being among PLWD and their caregivers

Are formal self-care interventions for healthy people effective? A systematic review of the evidence.

IntroductionPreventative interventions are shown to be effective in reducing 40% of the mortality due to unhealthy behaviours and lifestyles. Health-promoting self-care has been recognised as a promising strategy in preventative health. However, self-care research is being done around the self-management of chronic illnesses and the promotion of self-care practices among healthy populations has been overlooked by many healthcare systems.MethodThe study methodology was a systematic review with a narrative synthesis. The search was done through seven academic databases, reference tracking of selected articles and grey literature. The scoping, selection, screening and quality assessments of the articles were reviewed independently by two reviewers.ResultsSixteen studies met the inclusion criteria. Self-care behaviour, health-promotive lifestyle changes and medical care utilisation were some of the main outcomes evaluated in the studies. Positive effects were seen in increasing self-care and health-promotive behaviours in most interventions although limited or mixed impact was seen in health attitudes, beliefs and utilisation of medical services. Most studies were from high income settings with low-quality study designs. The complexity of the word ‘self-care’ and inconsistencies in the terminology used in health-promotive self-care were significant highlights of the study.ConclusionHealth-promoting preventative self-care interventions show promise in increasing the well-being of healthy people. However, the methodological drawbacks limit the generalisability of the findings. As the demand for self-care interventions increases, the lack of a formal globally accepted definition and framework and complexity of behaviour change are key limitations to consider moving forward.

Improving chronic illness self-management with the Apsáalooke Nation: Development of the Báa nnilah program

RationaleSince 1996, members of the Apsáalooke (Crow) Nation and faculty and students at Montana State University have worked in a successful community-based participatory research (CBPR) partnership, leading to increased trust and improvements in health awareness, knowledge, and behaviors. As major barriers to health and healthy behaviors have caused inequities in morbidity and mortality rates for multiple chronic diseases among the Apsáalooke people, community members chose to focus the next phase of research on improving chronic illness management. ObjectiveExisting chronic illness self-management programs include aspects inconsonant with Apsáalooke culture and neglect local factors seen as vital to community members managing their health conditions. The aim of this study was to use CBPR methods grounded in Apsáalooke cultural values to develop an intervention for improving chronic illness self-management. MethodCommunity members shared stories about what it is like to manage their chronic illness, including facilitators and barriers to chronic illness management. A culturally consonant data analysis method was used to develop a locally-based conceptual framework for understanding chronic illness management and an intervention grounded in the local culture. ResultsComponents of the intervention approach and intervention content are detailed and similarities and differences from other chronic illness management programs are described. ConclusionsOur collaborative process and product may be helpful for other communities interested in using story data to develop research projects, deepen their understanding of health, and increase health equity.

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.