scholarly journals FRI0626-HPR DEVELOPMENT OF A TOOL TO SUPPORT PATIENT AND NURSE IN COMMUNICATING ON SELF-MANAGEMENT SUPPORT NEEDS PROJECT OF V&VN RHEUMATOLOGY RESEARCH GROUP

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 917.1-918
Author(s):  
A. J. L. Meier ◽  
Y. Van Eijk-Hustings ◽  
B. Maat
Keyword(s):  
Rheumatic Disease ◽  
Patient Empowerment ◽  
Management Program ◽  
The Self ◽  
Self Management ◽  
Support Needs ◽  
Management Support ◽  
Communication Tool ◽  
Medical File ◽  
The Web

Background:Self-management, ability of patients to optimally integrate their illness or disorder into their daily lives, is explicitly part of the new definition of health.Self-management is considered essential in rheumatology care but is also a challenge for patients and rheumatology nurses. Often patients need support, but clarifying their support needs is difficult. Also, nurses experience difficulties in providing self-management support. A communication tool might help patients and nurses.Objectives:In preparation for development of an online self-management program, a framework comprising 55 needs from 11 different domains has been developed (1).The objective of this study is to develop a tool, based on this existing framework that can support patients and nurses in making targeted choices for adequate support.Methods:The tool was developed in two steps. First, it was explored if existing framework as such was useful as a basis for the tool. It was discussed in a brainstorming session with rheumatology patients and rheumatology nurses. Second, two additional workshops, one with patients and one with nurses were organised. In these sessions, yellow cards with 55 needs from the framework (1) were compared with a more generic framework for self-management support in chronic diseases: the self-management web (2), figure 1. Goal of the workshop was to gain insight into usability of models and to gauge the ideas for a tool. The choice for these two models was based on the scientific background as well as the use with patients with a chronic or rheumatic disease.Picture 1: WorkshopResults:In the first brainstorming session 5 patients and 5 rheumatology nurses participated.In the workshops, 11 patients and 130 nurses participated. Eligible adult patients, diagnosed with a rheumatic disease, were recruited by newsletter from the Dutch Arthritis Foundation. Nurses were recruited by newsletter from the Dutch Nurses Organisation (V&VN).According to participants, the framework alone is only useable when additional explanation and illustration of concepts will be provided and following missing topics are added; communication between specialisms, knowledge of the healthcare system, responsibility allocation, faith, religion, culture, nutrition, lifestyle, prevention.The self-management web appeared to be helpful. Not all cards with needs could be placed in this web. It was suggested to add following topics to the web: Peer support or experience experts’ contact, handling treatment recommendations, patient empowerment, defining limitations and supporting services like physiotherapy and municipality.There is overlap between topics of the web: Lifestyle, leisure and self-care. It was suggested to place associated topics together or give the same colour.Practical ideas for application of the web and about involving an experienced expert were discussed as well as the role of health professionals. Integration in e-health, linked to the medical file with visual support is preferred. Patients have to prepare themselves for consulting the nurse or doctor.Communication plays a very important role for all elements. The tool should be usable for people with limited health literacy skills and nurses need skills like motivational interviewing for using the tool.Conclusion:Existing frameworks seem useful as a scientific basis for the development of a communication tool for self-management support. Usability of a draft tool will be explored in a pilot study.References:[1] Ammerlaan J. Preferences and needs of patients with a rheumatic disease regarding the structure and content of online self-management support. Pat Educ Counsel. 2017;100(3):501-8.[2]Been-Dahmen, J.M.J. (2018). Self-Management Support: A broader perspective on what patients need and nurses could provide.Disclosure of Interests:A.J.L. Meier: None declared, Yvonne van Eijk-Hustings Grant/research support from: grand from sanofi and UCB, Consultant of: fee from amgen, Bertha Maat: None declared

Exploring Cancer Pain Self-Management Needs and Preferences: A Meta-Ethnography

2021 ◽  
pp. 104973232199897
Author(s):  
Alice Anderson ◽  
Angela Starkweather ◽  
Xiaomei Cong ◽  
Kim Kyounghae ◽  
Michelle Judge ◽  
...  
Keyword(s):  
Cancer Pain ◽  
The Self ◽  
Health Care Practitioner ◽  
Self Management ◽  
Support Needs ◽  
Management Support ◽  
Knowledge And Skills ◽  
Patients With Cancer ◽  
Practical Implications

Self-management of chronic disease and related symptoms provides a framework for understanding the contextual factors that influence self-management knowledge and skills that patients and families require to manage their condition on a day-to-day basis. The management of cancer pain is a significant issue for patients and families, and their experience can provide insight on cancer pain self-management support needs and preferences. A meta-synthesis of 20 qualitative research articles on self-management of cancer pain was conducted to gain a deeper understanding of the self-management support needs of patients with cancer pain. Noblit and Hare’s meta-ethnographic model was used. The meta-synthesis resulted in increased understanding of the needs and preferences for self-management support of cancer pain and the role of the health care practitioner. Practical implications are presented.

scholarly journals Multidisciplinary Treatment for Headache in the Canadian Healthcare Setting

2008 ◽  
Vol 35 (1) ◽  
pp. 46-56 ◽  
Author(s):  
Khara M. Sauro ◽  
Werner J. Becker
Keyword(s):  
Multidisciplinary Treatment ◽  
Healthcare Setting ◽  
Management Program ◽  
Patient Perceptions ◽  
The Self ◽  
Self Management ◽  
Patient Treatment ◽  
Treatment Programs ◽  
Public Healthcare ◽  
Management Workshop

Background/Objectives:Multidisciplinary treatment programs are seen as an effective way to treat patients with chronic illness. The purpose of this study was to describe a multidisciplinary headache program which was developed in the Canadian public healthcare setting, and to report on patient perceptions of the program and patient treatment outcomes.Methods:The Calgary Headache Assessment and Management Program (CHAMP) was developed with initial funding from Alberta Health, and continued with function from the Calgary Health Region. Patient perceptions of the program were obtained with questionnaires. Outcome measures for a cohort of patients who completed the Self-Management Workshop were obtained using standard headache related disability measures.Results:Patient perceptions of the education session, the Lifestyle Assessment, and the Self-Management Workshop were very positive. Headache Disability Inventory scores fell from 56.2 to 46.3 from baseline to three months post Self-Management Workshop (p<.001). Corresponding scores for the HIT-6 were 63.6 and 58.2 (p <.001).Conclusions:Multidisciplinary headache treatment programs can be developed in the Canadian public healthcare system. The program described here was well accepted by many patients and perceived to be useful by them. Headache related disability as measured by standard measures was significantly reduced after participation in the program.

scholarly journals Standardising the Lay: Logics of Change in Programs of Disease Self-management

2012 ◽  
Vol 4 (3) ◽  
pp. 425-442 ◽  
Author(s):  
Annegrete Juul Nielsen ◽  
Lone Grøn
Keyword(s):  
Chronic Disease ◽  
Role Models ◽  
Chronic Condition ◽  
Expert Knowledge ◽  
Management Program ◽  
The Self ◽  
Self Management ◽  
Social Settings ◽  
Patient Centric ◽  
Forms Of Knowledge

The health political discourse on self-care is dominated by the view that the selfmanaging patient represents a more democratic and patient-centric perspective, as he or she is believed to renegotiate the terms on which patient participation in health care has hitherto taken place. The self-managing patient is intended as a challenge to traditional medical authority by introducing lay methods of knowing disease. Rather than a meeting between authoritative professionals and vulnerable patients, the self-managing patient seeks to open up new spaces for a meeting between experts. The present paper questions these assumptions through an ethnographic exploration of a patient-led self-management program called the Chronic Disease Self-Management Program. The program is concerned with what its developers call the social and mental aspects of living with a chronic disease and uses trained patients as role models and program leaders. Drawing inspiration from Annemarie Mol’s term ’logic’, we explore the rationale of ’situations of selfmanagement’ and identify what we call a ’logic of change’, which involves very specific ideas on how life with a chronic condition should be dealt with and directs attention towards particular manageable aspects of life with a chronic condition. This logic of change entails, we argue, a clash not between ’medical’ and ’lay’ forms of knowledge but between different logics or perceptions of how transformation can be achieved: through open-ended and ongoing reflection and experimentation in social settings or through standardised trajectories of change. Returning to the literature on lay forms of knowledge and illness perspectives, we question whether programs such as the Chronic Disease Self-Management Program – despite its apparent patient-centric perspective – reproduces classical hierarchical relations between lay and expert knowledge, albeit in new forms.

O002. Factors facilitating the self- and shared-management of Juvenile Idiopathic Arthritis

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_5) ◽  
Author(s):  
Simon Stones
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Paediatric Rheumatology ◽  
The Self ◽  
Self Management ◽  
Management Support ◽  
Children And Young People ◽  
Realist Approach ◽  
Shared Management ◽  
Initial Question

Abstract Background Juvenile idiopathic arthritis (JIA) requires some form of lifelong management, with at least one third of children symptomatic in adulthood. Therefore, empowering children to competently self-manage their health and wellbeing across the lifecourse is logical, while supporting families in their shared-management role during childhood. However, there was a limited theoretical basis to the self- and shared-management of JIA across the lifecourse. The objective is to explore the factors facilitating the self- and shared-management of JIA using a realist approach to evaluation. Methods Guided by the Individual and Family Self-management Theory, a three-stage realist approach to evaluation was undertaken: 1) initial JIA self- and shared-management question theories were elicited from literature reviews and stakeholder insights [1]; 2) seven initial question theories were tested using teacher-learner cycle interviews with 20 participants; 3) findings were analysed using a theory-driven approach to thematic analysis, using deductive, inductive, and retroductive reasoning to extend or refute the initial question theories, in order to identify demi-regularities in the data. Results Six refined JIA self- and shared-management question theories emerged: 1) meaningful and bespoke self-management support across the life course for children and young people with JIA; 2) recognised and valued shared-management support for the families of children and young people with JIA, with autonomy in mind; 3) individual healthcare plans as a shared management communication tool to facilitate optimal management of JIA; 4) consistent recognition, value, and encourage of self- and shared-management support from the paediatric rheumatology multi-disciplinary team and associated professionals; 5) child, young-person, and family-focused paediatric rheumatology care and support services across the lifecourse; and 6) bespoke and inclusive approaches by education providers to enable children and young people with JIA to feel safe, supported, and able to fulfil their potential. Conclusion There is an increasing recognition of the importance of self- and shared-management of JIA and other paediatric-onset chronic conditions. However, there is a lack of an overall, cohesive approach to self- and shared-management between healthcare providers, education providers, and patient/parent organisations. The findings from this study illuminate the factors facilitating JIA self- and shared-management at individual, interpersonal, institutional and infrastructural levels, bearing relevance to individuals and organisations involved in caring for, and supporting children with JIA and their families.

scholarly journals 2294 Do patient comorbidities impact the effectiveness of a COPD self-management program?

2018 ◽  
Vol 2 (S1) ◽  
pp. 41-41
Author(s):  
Emilia Galli Thurber ◽  
Hanan Aboumatar
Keyword(s):  
Quality Of Life ◽  
Patient Outcomes ◽  
The United States ◽  
Management Program ◽  
Emergency Department Visits ◽  
The Self ◽  
Self Management ◽  
Management Intervention ◽  
Comorbidity Burden

OBJECTIVES/SPECIFIC AIMS: Chronic obstructive pulmonary disease (COPD) is a leading cause of both hospitalizations and readmissions in the United States, and about 1 in 5 hospitalized patients with COPD will be readmitted within 30 days. COPD-focused self-management programs are frequently used to help patients better manage their symptoms and prevent hospitalization. However, while the majority of patients with COPD have at least one comorbidity, most trials of COPD self-management programs either excluded patients with significant comorbidities or did not analyze the impact of comorbidities on patient outcomes. Using data from the BREATHE trial of a COPD self-management program, this study aims to determine if patient post-intervention outcomes differ based on the intensity and type of patient comorbidities. METHODS/STUDY POPULATION: In total, 240 patients hospitalized for COPD were randomly assigned to either a comprehensive self-management intervention or usual transitional care. Primary outcomes for this trial were the number of COPD-related hospitalizations and emergency department visits at 6 months and changes in COPD-specific quality of life. To determine whether patient comorbidities modify the effect of the self-management intervention on readmission and quality of life outcomes, we will compare patient outcomes across groups stratified by comorbidity burden (Charlson Comorbidity Index) and type (baseline diagnosis of congestive heart failure, diabetes, and depression). In addition, we will use regression analysis with interaction terms to test for interaction between comorbidity burden/type and intervention assignment. RESULTS/ANTICIPATED RESULTS: We hypothesize that the effect of the self-management intervention will differ in patients with greater comorbidity burden due to competing medical demands for patients with multimorbidity. DISCUSSION/SIGNIFICANCE OF IMPACT: The results of this study will help clinicians better target disease-specific self-management programs to the groups of patients with COPD who are likely to receive the greatest benefit from this type of intervention.

scholarly journals THU0699-HPR IS A SMARTPHONE APPLICATION USEFUL FOR SELF-MANAGEMENT SUPPORT IN PATIENTS WITH A RHEUMATIC DISEASE? 

2019 ◽  
Author(s):  
margot Walter ◽  
Janet Been-Dahmen ◽  
Annemarie de Vroed ◽  
Hetty Wintjes ◽  
Erwin Ista ◽  
...  
Keyword(s):  
Rheumatic Disease ◽  
Smartphone Application ◽  
Self Management ◽  
Management Support

Self-Management Support Needs of Patients with Chronic Diseases in a South African Township: A Qualitative Study

2017 ◽  
Vol 34 (1) ◽  
pp. 21-31 ◽  
Author(s):  
Loveness Dube ◽  
Kirstie Rendall-Mkosi ◽  
Stephan Van den Broucke ◽  
Anne-Marie Bergh ◽  
Nokuthula G. Mafutha
Keyword(s):  
Qualitative Study ◽  
South African ◽  
Chronic Diseases ◽  
Self Management ◽  
Support Needs ◽  
Management Support ◽  
South African Township

Experience of Being Young With Psoriasis: Self-Management Support Needs

2017 ◽  
Vol 28 (1) ◽  
pp. 73-86 ◽  
Author(s):  
Gitte Susanne Rasmussen ◽  
Knud Kragballe ◽  
Helle Terkildsen Maindal ◽  
Kirsten Lomborg
Keyword(s):  
Self Management ◽  
Support Needs ◽  
Management Support

scholarly journals Effects of self-management support and family participation enhancing program for delayed progression of diabetic nephropathy in Thai adults with type 2 diabetes

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Somsak Thojampa
Keyword(s):  
Diabetic Nephropathy ◽  
Self Efficacy ◽  
The Self ◽  
Self Management ◽  
Management Support ◽  
Family Participation ◽  
Type 2 Dm ◽  
The Family ◽  
Experimental Group

Abstract Background/Purpose: Type 2 diabetes mellitus (DM) is increasingly becoming common in developing countries including Thailand. Uncontrolled hyperglycemia can lead to progression of severe complications for persons with DM which include diabetic nephropathy and can, later on, lead to kidney failure. Self-management support and participation of social groups, specifically the family of the patient, can help people with DM in controlling the complications of their disease from progressing; in this case, the advancement of diabetic nephropathy. The aim of this research is to develop a program and determine if self-management support with the participation of the family members will have an effect in delaying the progress of diabetic nephropathy in adults with type 2 DM. Theoretical Framework: Self-management based on social cognitive and self-regulation theories were used in this study to set a framework which utilizes social support from the family and self-efficacy of patients in implementing self-management activities. Methods: This is a quasi-experimental research. The sample consisted of 50 Thai adults with type 2 DM, 25 for the control group and 25 for the experimental group. The participants in the experimental group attended a self-management support and family participation enhancing the program for 8 weeks. The interventions included a video presentation, manual, and health education with a family member in a focus group. Data were collected before attending the program and evaluated on the 8th and 12 weeks after the program. The instruments used for the data collection were (1) Self-Management Activity Questionnaire (SMAQ), (2) Self- Efficacy Questionnaire (SEQ). The data collected for clinical outcome used the automatic physiological measures: Systolic and Diastolic blood pressure, Hemoglobin A1c (HbA1c), serum creatinine (SCr) and estimated glomerular filtration rate (eGFR).  Data were analyzed using descriptive statistics, Independent t-test and Paired t-test and repeated measurement ANOVA. Results: The mean scores of the self-management activity and self-efficacy of the experimental group were significantly higher, their clinical outcomes for blood pressure, SCr and HbA1C levels were significantly lower, and eGFR results were significantly higher after attending the self-management support and family participation enhancing the program. Conclusions and Implications: The findings of this study indicate that the self-management and family participation enhancing program promote and support health behavior change and leads to better control of the delayed progression of diabetic nephropathy in Thai adults with type 2 DM. This can be applied by health care professionals in health care centers as a supplement to their usual care in dealing with persons with type 2 DM.

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