Self-management program participation and social support in Parkinson's disease: Mixed methods evaluation.
Ontology highlight
ABSTRACT:
SUBMITTER: Pappa K
PROVIDER: S-EPMC5711466 | biostudies-literature | 2017
REPOSITORIES: biostudies-literature
Publications
Self-management program participation and social support in Parkinson's disease: Mixed methods evaluation.
Pappa Katherine K Doty Tasha T Taff Steven D SD Kniepmann Kathy K Foster Erin R ER
Physical & occupational therapy in geriatrics 20170307 2
<h4>Aims</h4>To explore the potential influence of the Stanford Chronic Disease Self-Management Program (CDSMP) on social support in Parkinson disease (PD).<h4>Methods</h4>This was a quasi-experimental mixed methods design. Volunteers with PD (n=27) and care partners (n=6) completed the CDSMP, questionnaires of social support and self-management outcomes, and an interview about social support in relation to CDSMP participation. PD participants (n=19) who did not participate in the CDSMP complete ...[more]
Similar Datasets
Project description:BackgroundDigital technologies connect young people with health services and resources that support their self-care. The lack of accessible, reliable digital resources tailored to young people with persistent musculoskeletal pain is a significant gap in the health services in Australia. Recognizing the intense resourcing required to develop and implement effective electronic health (eHealth) interventions, the adaptation of extant, proven digital technologies may improve access to pain care with cost and time efficiencies.ObjectiveThis study aimed to test the acceptability and need for adaptation of extant digital technologies, the painHEALTH website and the iCanCope with Pain app, for use by young Australians with musculoskeletal pain.MethodsA 3-phased, mixed methods evaluation was undertaken from May 2019 to August 2019 in Australia. Young people aged 15 to 25 years with musculoskeletal pain for >3 months were recruited. Phases were sequential: (1) phase 1, participant testing (3 groups, each of n=5) of co-designed website prototypes compared with a control website (painHEALTH), with user tasks mapped to eHealth quality and engagement criteria; (2) phase 2, participants' week-long use of the iCanCope with Pain app with engagement data captured using a real-time analytic platform (daily check-ins for pain, interference, sleep, mood, physical activity, and energy levels; goal setting; and accessing resources); and (3) phase 3, semistructured interviews were conducted to gain insights into participants' experiences of using these digital technologies.ResultsFifteen young people (12/15, 80% female; mean age 20.5 [SD 3.3] years; range 15-25 years) participated in all 3 phases. The phase 1 aggregated group data informed the recommendations used to guide 3 rapid cycles of prototype iteration. Adaptations included optimizing navigation, improving usability (functionality), and enhancing content to promote user engagement and acceptability. In phase 2, all participants checked in, with the highest frequency of full check-ins attributed to pain intensity (183/183, 100.0%), pain interference (175/183, 95.6%), and mood (152/183, 83.1%), respectively. Individual variability was evident for monitoring progress with the highest frequency of history views for pain intensity (51/183, 32.3%), followed by pain interference (24/183, 15.2%). For the goals set feature, 87% (13/15) of participants set a total of 42 goals covering 5 areas, most frequently for activity (35/42, 83%). For phase 3, metasynthesis of qualitative data highlighted that these digital tools were perceived as youth-focused and acceptable. A total of 4 metathemes emerged: (1) importance of user-centered design to leverage user engagement; (2) website design (features) promoting user acceptability and engagement; (3) app functionality supporting self-management; and (4) the role of wider promotion, health professional digital prescriptions, and strategies to ensure longer-term engagement.ConclusionsLeveraging extant digital tools, with appropriate user-informed adaptations, can help to build capacity tailored to support young people's self-management of musculoskeletal pain.
| S-EPMC7305555 | biostudies-literature
Project description:This study aimed to explore user engagement with 'My Breathing Matters', a digital self-management intervention for asthma, and identify factors that may influence engagement. In a mixed methods design, adults with asthma allocated to the intervention arm of a feasibility trial (n = 44) participated in semi-structured interviews (n = 18) and a satisfaction questionnaire (n = 36) to explore their views and experiences of the intervention. Usage data highlighted that key intervention content was delivered to most users. The majority of questionnaire respondents (78%; n = 28) reported they would recommend the intervention to friends and family. Interviewees expressed positive views of the intervention and experienced several benefits, mainly improved asthma control, medication use, and breathing technique. Factors that may influence user engagement were identified, including perceptions of asthma control, current self-management practices, and appeal of the target behaviours and behaviour change techniques. Findings suggested My Breathing Matters was acceptable and engaging to participants, and it was used as intended.
| S-EPMC8178311 | biostudies-literature
Project description:Background: Survivors of colorectal cancer have to face long-term consequences of the disease and its treatment side effects, which in turn affect mood and psychological well-being. Self-management support may help colorectal cancer survivors to achieve healthy lifestyle and better adjustment.
However, there is little research evidence to support it and also no theory-based self-management support interventions specifically designed for colorectal cancer survivors in Taiwan.
Aim: The study aims is to test the efficacy of the Acceptance and Commitment Therapy -based self-management support program on the primary outcome, quality of life, and secondary outcomes, physical activity, fruit and vegetative intake, body mass index, sleep quality, emotion distress, and fatigue in colorectal cancer survivors .
Design: An experimental design with repeated measures will be used to test the intervention efficacy. A convenient sample of 250 colorectal cancer (stage I-III) survivors who has completed initial treatments will be recruited and randomized to the control or intervention group. The intervention includes a colorectal cancer self-management information booklet, a DVD, two individual skill trainings and 12 follow-up telephone calls. These are to establish participants’ self-management skills and healthy lifestyle, including physical activity and healthy eating fruits and vegetables. The control group will receive health education leaflets. Outcome variables will be assessed on the baseline, 2th, 4th, and 6th month in both groups. Descriptive analysis will be used to describe patients’ demographics, disease variables, and outcome variables. The Chi-square, t-test, and General Linear Mix-effect Model will be used to test the efficacy of the study interventions.
| 2298134 | ecrin-mdr-crc
Project description:BackgroundThe burden of obesity is high among US veterans, yet many face barriers to engaging in in-person, facility-based treatment programs. To improve access to weight-management services, the Veterans Health Administration (VHA) developed TeleMOVE, a home-based, 82-day curriculum that utilizes in-home messaging devices to promote weight loss in VHA patients facing barriers to accessing facility-based services.ObjectiveThe primary aim was to establish preliminary evidence for the program by comparing outcomes for TeleMOVE with standard, facility-based MOVE weight-management services (group, individual modalities) over the evaluation period based on the number of patients enrolled per site and the program's clinical effectiveness, as demonstrated by average weight lost per patient. The secondary aim was to understand factors influencing TeleMOVE implementation variability across demonstration sites to develop recommendations to improve national program dissemination.MethodsWe employed a formative mixed-methods design to evaluate the phased implementation of TeleMOVE at 9 demonstration sites and compare patient- and site-level measures of program uptake. Data were collected between October 1, 2009 and September 30, 2011. Patient-level program outcomes were extracted from VHA patient care databases to evaluate program enrollment rates and clinical outcomes. To assess preliminary clinical effectiveness, weight loss outcomes for veterans who enrolled in TeleMOVE were compared with outcomes for veterans enrolled in standard MOVE! at each demonstration site, as well as with national averages during the first 2 years of program implementation. For the secondary aim, we invited program stakeholders to participate in 2 rounds of semistructured interviews about aspects of TeleMOVE implementation processes, site-level contextual factors, and program delivery. Twenty-eight stakeholders participated in audio-recorded interviews.ResultsAlthough stakeholders at 3 sites declined to be interviewed, objective program uptake was high at 2 sites, delayed-high at 2 sites, and low at 5 sites. At 6 months post enrollment, the mean weight loss was comparable for TeleMOVE (n=417) and MOVE! (n=1543) participants at -5.2 lb (SD 14.4) and -5.1 lb (SD 12.2), respectively (P=.91). All sites reported high program complexity because TeleMOVE required more staff time per participant than MOVE! due to logistical and technical assistance issues related to the devices. High-uptake sites overcame implementation challenges by leveraging communication networks with stakeholders, adapting the program to patient needs whenever possible, setting programmatic goals and monitoring feedback of results, and taking time to reflect and evaluate on delivery to foster incremental delivery improvements, whereas low-uptake sites reported less leadership support and effective communication among stakeholders.ConclusionsThis implementation evaluation of a clinical telehealth program demonstrated the value of partnership-based research in which researchers not only provided operational leaders with feedback regarding the effectiveness of a new program but also relevant feedback into contextual factors related to program implementation to enable adaptations for national deployment efforts.
| S-EPMC6307696 | biostudies-literature
Project description:BackgroundSocial programs are services provided by governments, nonprofits, and other organizations to help improve the health and well-being of individuals, families, and communities. Social programs aim to deliver services effectively and efficiently, but they are challenged by information silos, limited resources, and the need to deliver frequently changing mandated benefits.ObjectiveWe aim to explore how an information system designed for social programs helps deliver services effectively and efficiently across diverse programs.MethodsThis viewpoint describes the configurable and modular architecture of Social Program Management (SPM), a system to support efficient and effective delivery of services through a wide range of social programs and lessons learned from implementing SPM across diverse settings. We explored usage data to inform the engagement and impact of SPM on the efficient and effective delivery of services.ResultsThe features and functionalities of SPM seem to support the goals of social programs. We found that SPM provides fundamental management processes and configurable program-specific components to support social program administration; has been used by more than 280,000 caseworkers serving more than 30 million people in 13 countries; contains features designed to meet specific user requirements; supports secure information sharing and collaboration through data standardization and aggregation; and offers configurability and flexibility, which are important for digital transformation and organizational change.ConclusionsSPM is a user-centered, configurable, and flexible system for managing social program workflows.
| S-EPMC8438610 | biostudies-literature
Project description:IntroductionTo address the global diabetes epidemic, lifestyle counseling on diet, physical activity, and weight loss is essential. This study assessed the implementation of a diabetes self-management education and support (DSMES) intervention using a mixed-methods evaluation framework.MethodsWe implemented a culturally adapted, home-based DSMES intervention in rural Indigenous Maya towns in Guatemala from 2018 through 2020. We used a pretest-posttest design and a mixed-methods evaluation approach guided by the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) framework. Quantitative data included baseline characteristics, implementation metrics, effectiveness outcomes, and costs. Qualitative data consisted of semistructured interviews with 3 groups of stakeholders.ResultsOf 738 participants screened, 627 participants were enrolled, and 478 participants completed the study. Adjusted mean change in glycated hemoglobin A1c was -0.4% (95% CI, -0.6% to -0.3%; P < .001), change in systolic blood pressure was -5.0 mm Hg (95% CI, -6.4 to -3.7 mm Hg; P < .001), change in diastolic blood pressure was -2.6 mm Hg (95% CI, -3.4 to -1.9 mm Hg; P < .001), and change in body mass index was 0.5 (95% CI, 0.3 to 0.6; P < .001). We observed improvements in diabetes knowledge, distress, and most self-care activities. Key implementation factors included 1) recruitment barriers for men, 2) importance of patient-centered care, 3) role of research staff in catalyzing health worker involvement, 4) tradeoffs between home and telephone visits, and 5) sustainability challenges.ConclusionA community health worker-led DSMES intervention was successfully implemented in the public health system in rural Guatemala and resulted in significant improvements in most clinical and psychometric outcomes. Scaling up sustainable DSMES in health systems in rural settings requires careful consideration of local barriers and facilitators.
| S-EPMC8673946 | biostudies-literature
Project description:The aim of this study is to explore the social support of male breast cancer patients (MBCP) in Germany. In particular, three aspects of social support focus on (a) the used resources within the social environment, (b) the received support, and (c) the differences of used social support between MBCP. A mixed-methods design is applied including data of qualitative interviews (N = 27 MBCP) and a written questionnaire (N = 100 MBCP). MBCP use different resources of support from their social environment like partners, family, friends, colleagues, other breast cancer patients, and medical experts. Mostly, MBCP receive emotional and informational support. They often receive emotional support from their partners and informational support from medical experts. Different types of social support usage can be identified dependent on age, occupation, and severity of disease. The older the patients and the less the disease severity, the less social support MBCP use. Within cancer care, partners and the closer social environment should be included more as they are a key resource for MBCP. As health-care professions might also be an important resource of support for MBCP, further research should examine this resource.
| S-EPMC6702782 | biostudies-other
Project description:ObjectivesParkinson's disease (PD) is a progressive neurodegenerative disease that often impedes activities of daily living (ADL) and social functioning. Impairment in these areas can alter social roles by interfering with employment status, household management, friendships, and other relationships. Understanding how PD affects social functioning can help clinicians choose management strategies that mitigate these changes.MethodsWe conducted a mixed-methods systematic review of existing literature on social roles and social functioning in PD. A tailored search strategy in five databases identified 51 full-text reports that fulfilled the inclusion criteria and passed the quality appraisal. We aggregated and analyzed the results from these studies and then created a narrative summary.ResultsOur review demonstrates how PD causes many people to withdraw from their accustomed social roles and experience deficits in corresponding activities. We describe how PD symptoms (eg, tremor, facial masking, and neuropsychiatric symptoms) interfere with relationships (eg, couple, friends, and family) and precipitate earlier departure from the workforce. Additionally, several studies demonstrated that conventional PD therapy has little positive effect on social role functioning.ConclusionsOur report presents critical insight into how PD affects social functioning and gives direction to future studies and interventions (eg, couple counseling and recreational activities).
| S-EPMC6949188 | biostudies-literature
Project description:Self-management education programs (SMEPs) are potentially effective in the symptomatic management of COPD. Little is presently known about the effectiveness of these programs in Chinese COPD patients. The objective of this study was to evaluate the effectiveness of a specifically designed SMEP on levels of self-efficacy in Chinese patients with COPD.Based on the Medical Research Council framework for evaluating complex interventions, an exploratory phase randomized controlled trial was employed to examine the effects of an SMEP. Self-efficacy was the primary outcome using the COPD Self-efficacy Scale, measured at baseline and 6 months after the program. Qualitative data were sequentially collected from these patients via three focus groups to supplement the quantitative findings.The experimental group displayed significant improvement in their general self-efficacy (Z =-2.44, P=0.015) and specifically in confronting 1) physical exertion (Z =-2.57, P=0.01), 2) weather/environment effects (Z =-2.63, P<0.001) and 3) intense emotions (Z =-2.54, P=0.01). Three themes emerged from the focus groups: greater disease control, improved psychosocial well-being and perceived incapability and individuality. The connection of the quantitative and qualitative data demonstrated that individual perceptual constancy of patients could be a determining factor modulating the effectiveness of this type of intervention.These findings highlight the potential putative benefits of an SMEP in Chinese patients with COPD. Further attention should be given to cultural considerations when developing this type of intervention in Chinese populations with COPD and other chronic diseases.
| S-EPMC5530051 | biostudies-other
Project description:BackgroundSelf-management is the key recommendation for managing nonspecific low back pain (LBP). However, there are well-documented barriers to self-management; therefore, methods of facilitating adherence are required. Smartphone apps are increasingly being used to support self-management of long-term conditions such as LBP.ObjectiveThe aim of this study was to assess the usability and acceptability of the SELFBACK smartphone app, designed to support and facilitate self-management of non-specific LBP. The app provides weekly self-management plans, comprising physical activity, strength and flexibility exercises, and patient education. The plans are tailored to the patient's characteristics and symptom progress by using case-based reasoning methodology.MethodsThe study was carried out in 2 stages using a mixed-methods approach. All participants undertook surveys, and semistructured telephone interviews were conducted with a subgroup of participants. Stage 1 assessed an app version with only the physical activity component and a web questionnaire that collects information necessary for tailoring the self-management plans. The physical activity component included monitoring of steps recorded by a wristband, goal setting, and a scheme for sending personalized, timely, and motivational notifications to the user's smartphone. Findings from Stage 1 were used to refine the app and inform further development. Stage 2 investigated an app version that incorporated 3 self-management components (physical activity, exercises, and education). A total of 16 participants (age range 23-71 years) with ongoing or chronic nonspecific LBP were included in Stage 1, and 11 participants (age range 32-56 years) were included in Stage 2.ResultsIn Stage 1, 15 of 16 participants reported that the baseline questionnaire was easy to answer, and 84% (13/16) found the completion time to be acceptable. Overall, participants were positive about the usability of the physical activity component but only 31% (5/16) found the app functions to be well integrated. Of the participants, 90% (14/16) were satisfied with the notifications, and they were perceived as being personalized (12/16, 80%). In Stage 2, all participants reported that the web questionnaire was easy to answer and the completion time acceptable. The physical activity and exercise components were rated useful by 80% (8/10), while 60% (6/10) rated the educational component useful. Overall, participants were satisfied with the usability of the app; however, only 50% (5/10) found the functions to be well integrated, and 20% (2/10) found them to be inconsistent. Overall, 80% (8/10) of participants reported it to be useful for self-management. The interviews largely reinforced the survey findings in both stages.ConclusionsThis study has demonstrated that participants considered the SELFBACK app to be acceptable and usable and that they thought it would be useful for supporting self-management of LBP. However, we identified some limitations and suggestions useful to guide further development of the SELFBACK app and other mobile health interventions.
| S-EPMC7511856 | biostudies-literature