Using the Adaptive Leadership Framework for Chronic Illness to Design a Palliative and Collaborative Intervention

Abstract Our study addresses symptoms and functional management early in acute myeloid leukemia treatment using a PAlliative and Collaborative Care inTervention (PACT) delivered by clinical staff. PACT is an interdisciplinary nurse-led intervention of nursing [RN], occupational therapy [OT], physical therapy [PT] for adults ≥ 60 years of age at time of initial treatment. Finding from our preliminary qualitative work led to use of the Adaptive Leadership Framework for Chronic Illness to guide optimal engagement of the patient in self-management of symptoms and functional activities to address QOL outcomes. We share lessons learned of how the ALFCI was applied to the PACT intervention to empower patients with self-management skills to reduce symptoms and optimize function. In summary, the team and patient identify and address emotional, motivational, attitudinal barriers so that the patient can do the work required for self- management to reduce symptoms and avoid functional decline.

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Adaptive Challenges and Family Support: Patient Self-Management during Treatment for Chronic Hepatitis C

Nursing Science Quarterly ◽

10.1177/08943184211031602 ◽

2021 ◽

Vol 34 (4) ◽

pp. 405-412

Author(s):

Donald E. Bailey ◽

Andrew J. Muir ◽

Michael P. Cary ◽

Natalie Ammarell ◽

Sarah Seaver ◽

...

Keyword(s):

Chronic Hepatitis ◽

Hepatitis C ◽

Chronic Hepatitis C ◽

Medical Records ◽

Family Intervention ◽

Adaptive Leadership ◽

Self Management ◽

Leadership Framework ◽

Adaptive Challenges ◽

Adaptive Work

The authors describe a family’s adaptive challenges and adaptive work during a family member’s treatment for Chronic Hepatitis C. We audiorecorded index and final clinical visits and interviewed participants (patients and providers) following the visits. We interviewed by telephone and reviewed medical records over the course of treatment. Transcripts were analyzed using directed content analysis. Three themes were identified: family adaptive challenges, patient-described aspects of family members’ adaptive challenges, and family adaptive work. There were four subthemes related to family adaptive work. The adaptive leadership framework for chronic illness provided direction for future family intervention.

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Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review

Journal of Medical Internet Research ◽

10.2196/13579 ◽

2019 ◽

Vol 21 (11) ◽

pp. e13579 ◽

Cited By ~ 6

Author(s):

Yisselle Ilene Virella Pérez ◽

Sharon Medlow ◽

Jane Ho ◽

Katharine Steinbeck

Keyword(s):

Systematic Review ◽

Chronic Illness ◽

Young People ◽

Physical Health ◽

Chronic Illnesses ◽

Self Management ◽

Management Skills ◽

Adult Care ◽

Web Based ◽

Care Services

Background More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. Objective This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. Methods We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. Results A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. Conclusions There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs. Trial Registration PROSPERO CRD42018104611; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=104611

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Adaptive Leadership Framework for Chronic Illness

Advances in Nursing Science ◽

10.1097/ans.0000000000000063 ◽

2015 ◽

Vol 38 (2) ◽

pp. 83-95 ◽

Cited By ~ 24

Author(s):

Ruth A. Anderson ◽

Donald E. Bailey ◽

Bei Wu ◽

Kirsten Corazzini ◽

Eleanor S. McConnell ◽

...

Keyword(s):

Chronic Illness ◽

Adaptive Leadership ◽

Leadership Framework

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Research Applying Adaptive Leadership Framework for Chronic Illness Across Settings of Care

Innovation in Aging ◽

10.1093/geroni/igab046.647 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 171-171

Author(s):

Ashley Leak Bryant ◽

Anna Beeber ◽

Bei Wu

Keyword(s):

Older Adults ◽

Chronic Illness ◽

Long Term Care ◽

Collaborative Work ◽

Adaptive Leadership ◽

Care Staff ◽

Intervention Design ◽

Term Care ◽

Leadership Framework

Abstract The carepartner is an essential member of the team to facilitate and assist in maximizing the independence of the older adult. The four papers in this symposium applies The Adaptive Leadership Framework for Chronic Illness (ALFCI) at the point of design, as well as an analytic framework for literature synthesis, intervention design, and analysis of existing data. In the first paper, a qualitative metasummary of a scoping review synthesizes qualitative findings about fatigue adaptation and challenges for stroke survivors, care partners, and healthcare professionals. The second paper describes the use of the ALFCI in an intervention study to manage symptom challenges in older adults with acute myeloid leukemia. The third paper shares staff’s experiences of providing direct care for older residents with advanced dementia in long-term care facilities. The fourth paper describes use of the carepartner–assisted intervention to improve oral hygiene of older adults with cognitive impairment. The ALFCI is a useful framework for intervention design 1) this framework provides a comprehensive way to examine the context of symptoms/behaviors (not just the symptom/behavior in isolation), 2) the framework guides “collaborative work”, 3) analytically it can help guide development of shared meaning of communication and “collaborative work” of dyads (family caregivers, long-term care staff and older adults), and 4) helps understand process of staff utilizing their strengths and doing adaptive work to facilitate interactions and communication, managing older residents’ behavioral and psychological symptoms of dementia, and improving their care provision and work life.

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Use of Teach-Back Methodology to Promote Self-management and Treatment Adherence in Children With Chronic Illness: a Systematic Review and Meta-analysis Protocol

10.21203/rs.3.rs-247424/v1 ◽

2021 ◽

Author(s):

Patrick McCrossan ◽

Kathryn Ferris ◽

Michael Shields ◽

Dara O'Donoghue

Keyword(s):

Systematic Review ◽

Chronic Illness ◽

Meta Analysis ◽

Young Person ◽

Self Management ◽

Management Skills ◽

Levels Of Care ◽

Meta Analyses ◽

Care Worker ◽

Analysis Protocol

Abstract Introduction Chronic disease in childhood is becoming more prevalent worldwide. Self-management skills can only be taught with effective communication between the health care worker and the patient or primary care provider. ‘Teach-back’ is one proposed method for providing this education which has yielded success in adult populations but is not yet fully employed in the paediatric setting. Aims To determine whether the ‘teach-back’ technique is effective and feasible at all levels of care (primary, secondary and tertiary) to improve the self-management skills and knowledge required for a young person, or their parent/guardian, to control their chronic illness. Methods We have developed a protocol for a systematic review and meta-analyses in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol (PRISMA-P) statement and have registered it with Prospero [CRD42021229025].

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The adaptation of everyday practices in the adoption of chronic illness

Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine ◽

10.1177/1363459317742263 ◽

2017 ◽

Vol 23 (3) ◽

pp. 325-343 ◽

Cited By ~ 1

Author(s):

Kadi Lubi

Keyword(s):

Chronic Illness ◽

Information Seeking ◽

Social Practice ◽

Chronic Illnesses ◽

Self Management ◽

Management Skills ◽

Social Practice Theory ◽

Related Information ◽

Practice Elements ◽

Research Findings

This article uses social practice theory to examine the role of information-seeking in the maintenance of existing lifestyle and illness-related adjustments in the context of chronic illnesses. The research findings are derived from a thematic analysis of 16 semi-structured in-depth interviews with Estonian Parkinson’s disease patients. The coding scheme bases on the four practice elements outlined by Schatzki (practical understandings, rules, teleological structures and general understandings) and other categories related to chronic illness self-management skills, bodily movements, daily routines and information-seeking practices. The findings reveal that people with chronic illness value maintaining their existing lifestyles as long as possible and the willingness to seek out illness-related information is related to the severity and duration of the disease. These findings suggest that effective illness-related communication that supports self-management should provide patients with possibilities to adjust and switch between practices in a time and a pace that is natural and acceptable to them.

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Designing an mHealth Roadmap for the Journey to Self-Management: A Qualitative Study with Adolescents and Young Adults Living with Chronic Illness

Chronic Illness ◽

10.1177/17423953211067436 ◽

2021 ◽

pp. 174239532110674

Author(s):

Caitlin S. Sayegh ◽

Ellen Iverson ◽

Clarissa Newman ◽

Diane Tanaka ◽

Ellen F. Olshansky ◽

...

Keyword(s):

Young Adults ◽

Chronic Illness ◽

Los Angeles ◽

Chronic Illnesses ◽

Adolescents And Young Adults ◽

Self Management ◽

Management Skills ◽

Structured Interviews ◽

Mhealth Intervention ◽

The Right

Objectives Adolescents and young adults (AYA) with chronic illnesses often struggle with illness self-management. The objective of this study is to understand how AYA with various chronic illnesses develop self-management skills and which mobile health (mHealth) strategies they believe could be helpful. Methods Semi-structured interviews were conducted with patients, between 16 to 20 years old, living with at least one chronic illness (N = 19), between 2018 and 2019 in Los Angeles, CA. Three coders completed thematic coding to understand how AYA develop and maintain self-management skills, to inform the development of mHealth interventions appropriate across a variety of chronic conditions. Results Results suggest that AYA develop self-management skills through several strategies, including (1) getting organized, (2) making it work for me and (3) keeping the right mentality. AYA described developing these strategies through: (1) receiving social support, (2) accessing helpful tools and technologies, and (3) going through a maturation process. They provided recommendations for mHealth intervention developers. Discussion The results suggest that an appealing mHealth intervention could support AYA patients in proactively acquiring self-management skills and prevent having to rely on trial and error or uneven access to guidance and support. Interventions should be responsive to individual technology preferences and practices.

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Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review (Preprint)

10.2196/preprints.13579 ◽

2019 ◽

Cited By ~ 1

Author(s):

Yisselle Ilene Virella Pérez ◽

Sharon Medlow ◽

Jane Ho ◽

Katharine Steinbeck

Keyword(s):

Systematic Review ◽

Chronic Illness ◽

Young People ◽

Physical Health ◽

Chronic Illnesses ◽

Self Management ◽

Management Skills ◽

Adult Care ◽

Web Based ◽

Care Services

BACKGROUND More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. OBJECTIVE This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. METHODS We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. RESULTS A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. CONCLUSIONS There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs.

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