Dataset Information

Exploring the Perceived Impact of the Chronic Disease Self-Management Program on Self-Management Behaviors among African American Women with Lupus: A Qualitative Study.

ABSTRACT:

Objective

To qualitatively explore the processes through which the Chronic Disease Self-Management Program (CDSMP)-a peer-led, group-based educational intervention for people with chronic conditions-affects self-management behaviors among African American women with systemic lupus erythematosus (SLE).

Methods

Using a longitudinal pre- and postintervention design, we conducted two waves of one-on-one, semistructured interviews with 24 purposefully sampled participants. Wave 1 interviews explored self-management behaviors at baseline; wave 2 interviews focused on changes in these behaviors postintervention. Transcripts were analyzed using thematic analysis methods.

Results

Study participants perceived the CDSMP to be a valuable resource that helped them improve fundamental self-management behaviors, including exercise, relaxation, diet, and medication adherence. We found, with few exceptions, that in this sample, women's reported changes in self-management behaviors did not vary by participant age, education, SLE disease severity, or depression status. Our analysis suggests that the CDSMP had the most widespread perceived effects on relaxation and exercise. Strategies that generated improvements in relaxation and exercise included goal setting, action planning, encouragement to pursue low-impact physical activity, and introduction of mindfulness techniques to better manage SLE symptoms.

Conclusion

Our findings suggest that African American women with SLE perceived the CDSMP as an effective educational self-management intervention. The program can potentially catalyze improvements in self-management behaviors in this population, regardless of demographic or disease characteristics.

SUBMITTER: Twumasi AA

PROVIDER: S-EPMC7077773 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Publications

Exploring the Perceived Impact of the Chronic Disease Self-Management Program on Self-Management Behaviors among African American Women with Lupus: A Qualitative Study.

Twumasi Abena A AA Shao Anna A Dunlop-Thomas Charmayne C Drenkard Cristina C Cooper Hannah L HL

ACR open rheumatology 20200209 3

<h4>Objective</h4>To qualitatively explore the processes through which the Chronic Disease Self-Management Program (CDSMP)-a peer-led, group-based educational intervention for people with chronic conditions-affects self-management behaviors among African American women with systemic lupus erythematosus (SLE).<h4>Methods</h4>Using a longitudinal pre- and postintervention design, we conducted two waves of one-on-one, semistructured interviews with 24 purposefully sampled participants. Wave 1 inter ...[more]

PMID: 32037683

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Project description:BackgroundHealthcare access, utilization, and quality play critical roles in shaping mortality and morbidity among patients diagnosed with systemic lupus erythematosus (SLE), and yet healthcare access, utilization, and quality can be suboptimal for many people living with SLE. The aim of this qualitative study was to explore the perceived impact of a peer-led, group-based educational intervention (the Chronic Disease Self-Management Program [CDSMP]) on healthcare engagement behaviors among African American women with SLE.MethodsParticipants were recruited from the WELL (Women Empowered to Live with Lupus) study, a behavioral trial of the effectiveness of the CDSMP on African American women diagnosed with SLE. We conducted two waves of qualitative, one-on-one, semi-structured interviews with 24 purposively sampled WELL participants; one interview was conducted before CDSMP participation and one after. Wave 1 interviews explored health service use behaviors at baseline; Wave 2 interviews focused on changes in these behaviors post-intervention and women's perceptions of whether and how the CDSMP shaped these changes. Transcripts were analyzed using thematic analysis methods.ResultsStudy participants perceived the CDSMP to be a valuable resource for supporting two distinct health service use behaviors: communicating with doctors (N = 16 [88.9%]) and managing medication side effects (N = 17 [41.2%]). Women perceived that the CDSMP had the most potent and widespread effects on patients' communication with doctors. Strategies that women believed generated improvements in patient-doctor communication included enhancing preparation for appointments and boosting patient participation during doctor's visits. Women's reported post-CDSMP improvements in health service use behaviors varied by disease severity and depression. Insurance coverage, while not probed directly during baseline interviews, emerged organically as a key factor affecting health service use behaviors; the CDSMP did not seem to improve participants' ability to circumvent insurance-related barriers to accessing care.ConclusionsOur findings suggest that the CDSMP may help enhance healthcare service utilization among African American women with SLE by improving doctor/patient communication and medication side effect management. If future research confirms this conclusion, African American women living with SLE should be encouraged to participate in CDSMP workshops to enhance health service use behaviors.Trial registrationNCT02988661 . Registered 12/07/2016.

Project description:BackgroundAA living in rural areas of the southeastern U.S. experience a disproportionate burden of cardiovascular disease (CVD) morbidity and mortality. Neighborhood environmental factors contribute to this disparity and may decrease the effectiveness of lifestyle interventions aimed at preventing CVD. Furthermore, the influence of neighborhood factors on AA CVD risk behaviors (i.e. physical activity) may be obscured by the use of researcher-defined neighborhoods and researcher-defined healthy and unhealthy places. The objective of this study was to elucidate the effects of neighborhood environments on AA CVD risk behaviors among AA adults who recently completed a lifestyle intervention. We specifically sought to identify AA adults' self-perceived places of significance and their perceptions of how these places impact CVD risk behaviors including diet, physical activity and smoking.MethodsWe conducted semi-structured interviews with AA adults (N = 26) living in two rural North Carolina counties (Edgecombe and Nash, North Carolina, USA). Participants were recruited from a community-based behavioral CVD risk reduction intervention. All had at least one risk factor for CVD. Participants identified significant places including where they spent the most time, meaningful places, and healthy and unhealthy places on local maps. Using these maps as a reference, participants described the impact of each location on their CVD risk behaviors. Data were transcribed verbatim and coded using NVivo 12.ResultsThe average age of participants was 63 (SD = 10) and 92% were female. Places participants defined as meaningful and places where they spent the most time included churches and relatives' homes. Healthy places included gyms and parks. Unhealthy places included fast food restaurants and relatives' homes where unhealthy food was served. Place influenced CVD risk behaviors in multiple ways including through degree of perceived control over the environment, emotional attachment and loneliness, caretaking responsibilities, social pressures and social support.ConclusionsAs we seek to improve cardiovascular interventions for rural AA in the American South, it will be important to further assess the effect of significant places beyond place of residence. Strategies which leverage or modify behavioral influences within person-defined significant places may improve the reach and effectiveness of behavioral lifestyle interventions.

Project description:BackgroundAccessible self-management interventions are critical for adolescents with sickle cell disease to better cope with their disease, improve health outcomes and health-related quality of life, and promote successful transition to adult health care services. However, very few comprehensive self-management and transitional care programs have been developed and tested in this population. Internet and mobile phone technologies can improve accessibility and acceptability of interventions to promote disease self-management in adolescents with sickle cell disease.ObjectiveThe aim of this study was to qualitatively explore the following from the perspectives of adolescents, parents, and their health care providers: (1) the impact of sickle cell disease on adolescents to identify challenges to their self-management and transitional care and (2) determine the essential components of a digital self-management and transitional care program as the first phase to inform its development.MethodsA qualitative descriptive design utilizing audio-recorded, semistructured interviews was used. Adolescents (n=19, aged 12-19 years) and parents (n=2) participated in individual interviews, and health care providers (n=17) participated in focus group discussions and were recruited from an urban tertiary care pediatric hospital. Audio-recorded data were transcribed verbatim and organized into categories inductively, reflecting emerging themes using simple content analysis.ResultsData were categorized into 4 major themes: (1) impact of sickle cell disease, (2) experiences and challenges of self-management, (3) recommendations for self-management and transitional care, and (4) perceptions about a digital self-management program. Themes included subcategories and the perspectives of adolescents, parents, and health care providers. Adolescents discussed more issues related to self-management, whereas health care providers and parents discussed issues related to transition to adult health services.ConclusionsAdolescents, parents, and health care providers described the continued challenges youth with sickle cell disease face in terms of psychosocial impacts and stigmatization. Participants perceived a benefit to alleviating some of these challenges through a digital self-management tool. They recommended that an effective digital self-management program should provide appropriate sickle cell disease-related education; guidance on developing self-advocacy and communication skills; empower adolescents with information for planning for their future; provide options for social support; and be designed to be engaging for both adolescents and parents to use. A digital platform to deliver these elements is an accessible and acceptable way to address the self-management and transitional care needs of adolescents.

Project description:BackgroundChronic pain conditions entail significant personal and societal burdens and improved outreach of evidence-based pain self-management programs are needed. Digital cognitive-behavioral self-management interventions have shown promise. However, evidence is still scarce and several challenges with such interventions for chronic pain exist. Exploring patients' experiences and engagement with digital interventions may be an essential step towards developing meaningful digital self-management interventions for those living with chronic pain.ObjectivesThis study aimed to gain insight into the experiences of people with chronic pain when engaging with EPIO, an application (app)-based cognitive-behavioral pain self-management intervention program.MethodsParticipants (N = 50) living with chronic pain received access to the EPIO intervention in a feasibility pilot-study for 3 months. During this time, all participants received a follow-up phone call at 2-3 weeks, and a subsample (n = 15) also participated in individual semi-structured interviews after 3 months. A qualitative design was used and thematic analysis was employed aiming to capture participants' experiences when engaging with the EPIO intervention program.ResultsFindings identifying program-related experiences and engagement were organized into three main topics, each with three sub-themes: (1) Engaging with EPIO; motivation to learn, fostering joy and enthusiasm, and helpful reminders and personalization, (2) Coping with pain in everyday life; awareness, practice and using EPIO in everyday life, and (3) The value of engaging with the EPIO program; EPIO - a friend, making peace with the presence of pain, and fostering communication and social support.ConclusionsThis qualitative study explored participants' experiences and engagement with EPIO, a digital self-management intervention program for people living with chronic pain. Findings identified valued aspects related to motivation for engagement, and showed how such a program may be incorporated into daily life, and encourage a sense of acceptance, social support and relatedness. The findings highlight vital components for facilitating digital program engagement and use in support of self-management for people living with chronic pain.Trial registrationClinicalTrials.gov NCT03705104 .

Project description:Systemic Lupus Erythematosus (lupus) is a chronic autoimmune disease that can impact any organ system and result in life-threatening complications. African-Americans are at increased risk for morbidity and mortality from lupus. Self-management programs have demonstrated significant improvements in health distress, self-reported global health, and activity limitation among people with lupus. Despite benefits, arthritis self-management education has reached only a limited number of people. Self-selection of program could improve such trends. The aim of the current study is to test a novel intervention to improve quality of life, decrease indicators of depression, and reduce perceived and biological indicators of stress in African-American lupus patients in South Carolina.In a three armed randomized, wait list controlled trial, we will evaluate the effectiveness of a patient-centered 'a-la-carte' approach that offers subjects a variety of modes of interaction from which they can choose as many or few as they wish, compared to a 'set menu' approach and usual care. This unique 'a-la-carte' self-management program will be offered to 50 African-American lupus patients participating in a longitudinal observational web-based SLE Database at the Medical University of South Carolina. Each individualized intervention plan will include 1-4 options, including a mail-delivered arthritis kit, addition and access to an online message board, participation in a support group, and enrollment in a local self-management program. A 'set menu' control group of 50 lupus patients will be offered a standardized chronic disease self-management program only, and a control group of 50 lupus patients will receive usual care. Outcomes will include changes in (a) health behaviors, (b) health status, (c) health care utilization, and (d) biological markers (urinary catecholamines).Such a culturally sensitive educational intervention which includes self-selection of program components has the potential to improve disparate trends in quality of life, disease activity, depression, and stress among African-American lupus patients, as better outcomes have been documented when participants are able to choose/dictate the content and/or pace of the respective treatment/intervention program. Since there is currently no "gold standard" self-management program specifically for lupus, this project may have a considerable impact on future research and policy decisions.NCT01837875 ; April 18, 2013.

Project description:BACKGROUND:Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that is associated with increased morbidity, mortality, healthcare costs and decreased quality of life. African Americans in the USA have three to four times greater prevalence of SLE, risk of developing SLE at an earlier age, and SLE-related disease activity, damage, and mortality compared with Caucasians, with the highest rates experienced by African American women. There is strong evidence that patient-level factors are associated with outcomes, which justifies targeting them with intervention. While evidence-based self-management interventions that incorporate both social support and health education have reduced pain, improved function, and delayed disability among patients with SLE, African Americans and women are still disproportionately impacted by SLE. Peer mentoring interventions are effective in other chronic conditions that disproportionately affect minorities, such as diabetes mellitus, HIV, and kidney disease, but there is currently no empirically tested peer mentoring intervention developed for patients with SLE. Preliminary data from our group suggest that peer mentoring improves self-management, reduces disease activity, and improves health-related quality of life (HRQOL) in African American women with SLE. METHODS:This study will test an innovative, manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management. Through a randomized, "mentored" or "support group" controlled design, we will assess the efficacy and mechanism(s) of this intervention in self-management, disease activity, and HRQOL. DISCUSSION:This is the first study to test peer mentorship as an alternative strategy to improve outcomes in African American women with SLE. This could result in a model for other programs that aim to improve disease self-management, disease activity, and HRQOL in African American women suffering from chronic illness. The peer mentoring approach is uniquely fitted to African Americans, and this intervention has the potential to lead to health improvements for African American women with SLE that have not been attainable with other interventions. This would significantly reduce disparities and have considerable public health impact. TRIAL REGISTRATION:ClinicalTrials.gov, NCT03734055 . Registered on 27 November 2018.

Project description:Introduction: The Chronic Disease Self-Management Program (CDSMP) improves self-efficacy and health outcomes in people with chronic diseases. In the context of the EFFICHRONIC project, we evaluated the efficacy of CDSMP in relieving frailty, as assessed by the self-administered version of Multidimensional Prognostic Index (SELFY-MPI), identifying also potential predictors of better response over 6-month follow-up. Methods: The SELFY-MPI explores mobility, basal and instrumental activities of daily living (Barthel mobility, ADL, IADL), cognition (Test Your Memory-TYM Test), nutrition (Mini Nutritional Assessment-Short Form-MNA-SF), comorbidities, medications, and socio-economic conditions (social-familiar evaluation scale-SFES). Participants were stratified in three groups according to the 6-month change of SELFY-MPI: those who improved after CDSMP (Δ SELFY-MPI < 0), those who remained unchanged (Δ SELFY-MPI = 0), and those who worsened (Δ SELFY-MPI > 0). Multivariable logistic regression was modeled to identify predictors of SELFY-MPI improvement. Results: Among 270 participants (mean age = 61.45 years, range = 26–93 years; females = 78.1%) a benefit from CDSMP intervention, in terms of decrease in the SELFY-MPI score, was observed in 32.6% of subjects. SELFY-MPI improvement was found in participants with higher number of comorbidities (1–2 chronic diseases: adjusted odd ratio (aOR)=2.38, 95% confidence interval (CI) =1.01, 5.58; ⩾ 3 chronic diseases: aOR = 3.34, 95% CI = 1.25, 8.90 vs no chronic disease), poorer cognitive performance (TYM ⩽ 42: aOR = 2.41, 95% CI = 1.12, 5.19 vs TYM > 42) or higher risk of malnutrition (MNA-SF ⩽ 11: aOR = 6.11, 95% CI = 3.15, 11.83 vs MNA-SF > 11). Conclusion: These findings suggest that the CDSMP intervention contributes to decreasing the self-perceived severity of frailty (SELFY-MPI score) in more vulnerable participants with several chronic diseases and lower cognitive performance and nutritional status.

Dataset Information

Exploring the Perceived Impact of the Chronic Disease Self-Management Program on Self-Management Behaviors among African American Women with Lupus: A Qualitative Study.

Objective

Methods

Results

Conclusion

Publications

Exploring the Perceived Impact of the Chronic Disease Self-Management Program on Self-Management Behaviors among African American Women with Lupus: A Qualitative Study.

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