Disease Self-Management Course Research Articles

Chronic Disease Self-management Support for People with a Migrant Background: towards a Peer-led Group Program to Improve Equity in Health

Limited health literacy and language skills are barriers for people with a migrant background (PMB) to access health information and healthcare services, in particular for those living with chronic conditions. During the introduction of a peer-led Stanford chronic disease self-management course in Switzerland, special interest in the program as well as motivation of PMB was observed. In response, we examined if the program can be implemented in German for people with limited language skills. This explorative study is part of the evaluation study on introducing the adapted Stanford program in Switzerland and German-speaking Europe. Following the principles of Grounded Theory, semi-structured focus group and individual interviews were conducted with course participants, leaders and coordinators (n=30) and analyzed thematically. The focus was on the feasibility, satisfaction and course content. In principle, the program seems to have positive value for PMB, may work for them in German, have high relevance for everyday life and give an impetus for social integration. The need for and extent of modification of the program for PMB has to be further explored in order to make it more accessible for vulnerable groups.

Foundation engagement in healthy aging initiatives and evidence-based programs for older adults.

Foundation engagement in healthy aging initiatives and evidence-based programs for older adults.

The experience of attending a lay-led, chronic disease self-management programme from the perspective of participants with multiple sclerosis

A lay-led, community-based intervention, the Chronic Disease Self-Management Course (CDSMC) is effective for a range of long-term health conditions (e.g. arthritis, heart disease). However, the perceived value and experience of the CDSMC for people with Multiple Sclerosis (MS) has not been examined. The present qualitative study addressed this omission. Ten participants with MS (7 female; age range 35 to 60 years; disease duration 4 to 19 years) were interviewed before attending the CDSMC and at 4-month follow-up. Data were analysed using Framework Analysis. Some participants learned new self-management techniques and reported enhanced confidence (self-efficacy), whereas other participants were already confident in their self-management ability and found the CDSMC acted as a reminder of techniques previously used. Relaxation, pacing, and goal setting were particularly valuable for managing fatigue. Goal setting helped some participants to build confidence. Participants valued meeting similar others including those with different conditions. The CDSMC was an opportunity for social comparison and inspirational role modelling. Improvements to the CDSMC were suggested, including the addition of specific MS information. Overall, the CDSMC was viewed as a valuable source of new skills and a reminder of previously learned self-management skills, particularly in the context of managing fatigue. Gender differences emerged.

Understanding metaphor to facilitate emotional expression during a chronic disease self-management course

ObjectiveThis study was designed to understand emotional expression as an element of the chronic disease self-management course (CDSMC). MethodsInterpretive phenomenological analysis (IPA) was used to analyse a qualitative interview data set in which 10 lay-tutors described their perceptions of emotional expression during a CDSMC. The accounts were used to develop an interpretive phenomenological account. ResultsTutors suggest that people on a CDSMC are often unaware of their own emotional state and lack the vocabulary for expression. Tutors use metaphorical language to help Course participants to identify their own feelings and construct meaning of their illness experiences. ‘Off-loading’ and ‘feeling blue’ are used to help them find the expressions to talk about their emotions and release their feelings. ConclusionTutors use metaphoric terms as a framework for the understanding of emotional states that Course participants often find ‘difficult to label’. The analogous structure of metaphor helps with the understanding of inner feelings and provides expressive phrases for dialogue that can lead to emotional relief. Practice implicationsThis study provides important considerations that could be applied when training CDSMC tutors to help facilitate emotional understanding and expression.

A randomised controlled trial of lay-led self-management for people with multiple sclerosis

Objective To determine the impact of the Chronic Disease Self-Management Course (CDSMC) on people with multiple sclerosis (MS). Methods 2-group, randomised, controlled trial with Intervention Group (IG) and Waiting-List Control Group (WLCG). Additional data were collected from a Comparison Group (CG) who chose not to attend the CDSMC. Participants completed baseline questionnaires; IG participants attended the CDSMC immediately; all participants were assessed at 4-months and 12-months. Results 216 baseline questionnaires were returned; 73% were female, mean age 51.1 years, mean disease duration 12.0 years. Results showed that the CDSMC had an impact on self-management self-efficacy (ES 0.30, p = 0.009 for the IG) and MSIS physical status (ES 0.12 for the IG, p = 0.005). There were no other statistically significant changes. However, trends towards improvement on depression (ES 0.21 for the IG, p = 0.05) and MS self-efficacy (ES 0.16 for the IG, p = 0.04) were noted. All improvements were maintained at 12-months. At baseline, CG participants were older, had longer disease duration ( p < 0.01) and less anxiety ( p = 0.009) compared to RCT participants. Conclusion The CDSMC provides some small positive effects for people with MS. Motivation to attend may be linked to psychological distress and disease duration. Practice implications The CDSMC may be of value for those with mild anxiety/depression who need extra support. Attendance early in the disease course is recommended.

Predicting who will benefit from an Expert Patients Programme self-management course.

In England, the Expert Patients Programme, a lay-led chronic disease self-management course, was developed to improve self-care support and skills. The course is designed for anyone with a self-defined long-term condition, and attracts a heterogeneous group of patients. A randomised controlled trial has demonstrated effectiveness in improving subjective health. However, it is not known whether particular patient characteristics predict the impact of the course. To determine whether baseline characteristics predict clinical outcomes from attendance at a chronic disease self-management course; and to assess whether identification of such characteristics assists in targeting the course to individuals most likely to benefit. A post-hoc subgroup analysis of data from a randomised controlled trial to explore predictors of three trial outcomes: self-efficacy, energy, and health-related quality of life. Participants with self-defined long-term conditions (n = 629) were recruited from community settings in all 28 strategic health authorities in England. Multiple regression was used to examine interactions between baseline variables and trial outcomes. The predictors demonstrating significant interactions were: age and general health, and baseline values for self-efficacy, energy levels, and health-related quality of life. Participants with lower self-efficacy and health-related quality of life at baseline demonstrated more positive health outcomes. The Expert Patients Programme may have a protective effect on health-related quality of life for patients with poor health and low confidence. Younger people benefited substantially more than older people. Results suggest that positive outcomes associated with the course will be demonstrated with a wide variety of patients, although it may be worthwhile encouraging attendance of younger patients, those lacking confidence, and those coping poorly with their condition.

Generating interest in the Chronic Disease Self-Management Course: What makes a successful press release?

Generating interest in the Chronic Disease Self-Management Course: What makes a successful press release?

Implementing chronic disease self-management in community settings: lessons from Australian demonstration projects

The evaluation of the Sharing Health Care Initiative addressed the translation of different models of chronic disease self-management into health and community service contexts in Australia. Across seven projects, four intervention models were adopted: (1) the Stanford Chronic Disease Self Management course; (2) generic disease management planning, training and support; (3) tailored disease management planning, training and support, and; (4) telephone coaching. Targeted recruitment through support groups and patient lists was most successful for reaching high-needs clients. Projects with well developed organisational structures and health system networks demonstrated more effective implementation. Engagement of GPs in recruitment and client support was limited. Future self-management programs will require flexible delivery methods in the primary health care setting, involving practice nurses or the equivalent. After 12 months there was little evidence of potential sustainability, although structures such as consumer resource centres and client support clubs were established in some locations. Only one project was able to use Medicare chronic disease-related items to integrate self-management support into routine general practice. Participants in all projects showed improvements in self-management practices, but those receiving Model 3, flexible and tailored support, and Model 4, telephone coaching, reported the greatest benefits.

Recovery following stroke: The role of self-management education

Current stroke rehabilitation tends to focus on the bio-medical course of disability, often responding to psychological and social issues only when they have been implicated in crises. Although this situation is costly, little evidence exists in relation to how psychological and social outcomes can be facilitated or how psychosocial decline can be prevented. In the area of adjustment following traumatic injury, there has been some suggestion that rehabilitation should focus on the expansion of resources, skills and self-efficacy as this will enable individuals to cope more effectively with their medical condition and circumstances. The current study was a longitudinal randomised controlled trial involving 100 people with stroke, 58 of whom were randomly allocated to an intervention based on the notion of psychosocial skill expansion. All were patients of a major hospital in Queensland, Australia. An existing self-management intervention (The Chronic Disease Self-Management Course, Lorig et al., 2001) was used to operationalise the concept of psychosocial skill expansion. The control group reported declines in functioning during the first year following stroke in the areas of family roles, activities of daily living, self-care and work productivity, that were not reported by the intervention group. Although the groups had reached similar levels by one year post-stroke, this intervention may have a protective function, presumably by improving capacity to manage the functional requirements of daily life. However, the intervention did not appear to have its impact through self-efficacy, as was expected, and failed to influence outcomes such as mood or social participation. Nevertheless, the intervention warrants further investigation, given that it appears to improve rehabilitation outcomes, at least in the short-term.

Self-management Training for People with Chronic Disease: A Shared Learning Experience

The lay-led, Chronic Disease Self-Management Course (CDSMC) is designed to train people in self-management. The present study focused on the experiences of a group of participants attending the CDSMC. Data were collected via interviews with nine participants four months and twelve months after attending the CDSMC. Results showed that participants appreciated the opportunity to share experiences in a reassuring environment. Goal setting was critical in making changes. The CDSMC provided participants with the confidence to select the self-management technique that would meet their needs at a given point in time.

A 12‐month follow‐up study of self‐management training for people with chronic disease: Are changes maintained over time?

A previous study reported some improved outcomes at 4-month follow-up after attendance on a lay-led, chronic disease self-management course (CDSMC). The purpose of this study was to determine whether changes were maintained over time (i.e. at 12 months) and to describe participants' current use of self-management techniques. The study was a 12-month follow-up of a sample of 171 participants who attended a CDSMC in the UK. Data were collected by self-administered questionnaires mailed to participants 12 months after they commenced a CDSMC and via telephone interviews with a sub-sample. The sample had a mean age of 54 years, mean disease duration of 16 years, 73% were women, and chronic diseases included endometriosis, depression, diabetes, myalgic encephalomyelitis, osteoporosis and polio. The significant improvements in outcomes identified at 4 months (i.e. cognitive symptom management, self-efficacy, communication with physician, fatigue, anxious and depressed moods and health distress) were sustained at 12 months. No significant changes between 4- and 12-month assessments were found on any study variables. Interview data confirmed that participants continued to use some of the self-management techniques learned on the course. Attendance on the CDSMC may lead to longer-term changes in key outcomes such as self-efficacy, use of some self-management behaviours and some aspects of health status (e.g. fatigue, depressed mood).

Volunteer, lay tutors' experiences of the Chronic Disease Self-Management Course: being valued and adding value.

Chronic disease is a public health issue that could be addressed, in part, by increasing the ability of individuals to better manage their condition and its consequences on a day-to-day basis. One intervention designed to facilitate this is the Chronic Disease Self Management Course (CDSMC) that is delivered by volunteer, lay tutors who themselves have a chronic disease. Although there is growing evidence of course effectiveness for participants, the experiences of tutors have been neglected. This study aims to address this omission. Telephone interviews were conducted with 11 (six male) tutors: all interviews were transcribed and thematically analysed. Being a volunteer lay-tutor was perceived to be an enjoyable and valuable experience despite the challenges associated with course delivery, such as organizational demands and managing the diverse needs of mixed groups of chronic disease participants that led to a tension between disease-specific needs and the generic approach of the course. Being valued and adding value to the lives of others were key benefits of being a volunteer tutor, along with increased confidence that they were doing something positive for others. Course delivery prompted the initiation and maintenance of tutors' own self-management behaviours.

Understanding beliefs about exercise among participants attending the Chronic Disease Self-Management Course

Understanding beliefs about exercise among participants attending the Chronic Disease Self-Management Course

Chronic disease self-management workshop: an implementation model from southern California.

What if there was a new medication for patients with chronic disease that had been proven to improve overall functioning, decrease fatigue and health distress, and reduce the number of days patients spent in the hospital? And what if the treatment had no known adverse effects? Its major side effects were that patients felt less depressed and more confident in managing their illnesses. This treatment is not a new drug. Rather, these benefits result from participation in a lay-led [peer-led] Chronic Disease Self-Management course for patients with chronic illness. Indications for use include patients with one or more chronic diseases. The dose is a two-hour [21 2-hour] session each week for seven [6] weeks. The course is cost-effective: documented improvements in quality and cost savings yielding a greater than 3:1 return on investment. This new “medication” has now been accepted in the formulary of several Kaiser Permanente regions, integrated into care delivery, and is being made available through community organization partnerships with underserved patients in our larger community. (Sobel, 2001, p. 1)