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1.
Artículo en Inglés | MEDLINE | ID: mdl-38851554

RESUMEN

OBJECTIVE: To determine if the receipt of occupational performance coaching (OPC) by adults living with multiple sclerosis (MS) improves participants' satisfaction with performance in daily activities (primary outcome); improves perceived performance in daily activities, resilience, autonomy, and participation; and reduces illness intrusiveness and effect of MS (secondary outcomes). DESIGN: Two-group randomized clinical trial with a waitlist control. SETTING: Community. PARTICIPANTS: Convenience sample of adults with MS were recruited through a research registry. Eighty-three individuals were approached; 35 were assessed for eligibility and 31 were enrolled and 30 completed baseline assessment (Final sample size, N=30). Participants were English-speaking, were without serious cognitive impairment or severe depression, and were not receiving other coaching interventions. INTERVENTIONS: Six telephone sessions of OPC were delivered by a trained facilitator over 10 weeks. Initial sessions focused on goal setting, prioritization, and action planning. Subsequent sessions involved goal and action plan review, discussion of facilitators and barriers, and goal and plan refinement. MAIN OUTCOME MEASURES: Primary outcome was participants' satisfaction with performance in daily activities, as measured by the Canadian Occupational Performance Measure (COPM). Secondary outcome measures included the COPM performance rating, Connor-Davidson Resilience Scale, Impact on Participation and Autonomy Questionnaire, Adapted Illness Intrusiveness Rating Scale, and MS Impact Scale. Measures were administered by a blinded assessor at baseline, 10 weeks, and 2 months. RESULTS: Participants in the intervention and waitlist control groups were equivalent on demographic and outcome measures at baseline. At 10 weeks, the intervention group had significantly higher COPM ratings for both satisfaction (P<.001) and performance (P=.002). No other outcomes were significantly different. For the intervention group, the benefits of OPC were maintained at 2 months. CONCLUSIONS: OPC led to improved satisfaction with performance and performance in daily activities. Future research with a larger sample is needed to determine other effects and who benefits most from OPC.

2.
Br J Occup Ther ; 87(6): 334-343, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38832353

RESUMEN

Introduction: COVID-19-related restrictions resulted in changes to time use and occupational participation, impacting individual and collective well-being. This study addressed a knowledge gap concerning the adaptive process during periods of occupational disruption. We explored the experience of occupational disruption and how people managed disruption during the COVID-19 pandemic. Methods: We used a qualitative descriptive approach and interviewed 18 participants of a larger survey study of time use during the COVID-19 pandemic undertaken around a medium-sized city in Canada. Transcript analysis was conducted inductively using conventional content analysis. Findings: Two overarching themes were constructed during data analysis: The Disruption Experience and Adopting New Habits and Routines. In the face of disruption, participants described a sense of loss and disconnection, and challenges with time management. Establishing new habits and routines required new learning associated with increased time and flexibility, connecting with others and health and wellness. Conclusion: During changing pandemic restrictions, participants expressed a sense of loss, disconnection and time management challenges associated with occupational disruptions, but also described ways they adapted, improving their health and well-being. Strategies identified through this work may be used to enhance adaptation during disruptions. Future research should explore differences in adaptation, among more diverse populations.

3.
Disabil Rehabil Assist Technol ; : 1-11, 2024 May 10.
Artículo en Inglés | MEDLINE | ID: mdl-38727190

RESUMEN

Cognitive decline is becoming more prevalent as population ages. Technology offers solutions to help people with cognitive decline age in place. A compassionate approach to care can promote engagement in technology use by older adults with cognitive decline and equitable access. This scoping review summarized research literature on approaches to design and selection of technology that could support a compassionate approach to technology use for daily functioning among adults with cognitive decline and their care partners. We used the framework of Arksey and O'Malley. Key words capturing constructs of compassion, technology, and cognitive decline were searched in CINAHL, Medline, and PsycINFO. Peer-reviewed articles about the design for or use of technology by persons with cognitive decline or their care partners were included. Two reviewers screened and extracted data. Data informing compassionate technology use were analysed thematically. Fifty-five included articles represented a variety of technologies and purposes with ethics being the predominant perspective (n = 15). Analysis identified four categories: 1) Person- and care partner-centered approach, 2) Tailoring design to abilities, 3) Tailoring selection and application, and 4) Training and support. Using study findings, we developed a framework for compassionate use of technology for people living with cognitive decline and their care partners.


Compassionate approach to technology design and selection for person with cognitive decline and their care partners involves supporting autonomy, and consideration of ethical issues and specific technology purposeA family-centered care with a strong relational component is important when selecting technology with people with cognitive declineHealthcare providers and industry representatives require training to understand and adapt their approach to meet the needs of individuals living with cognitive decline and their care partners.

4.
Pilot Feasibility Stud ; 10(1): 59, 2024 Apr 08.
Artículo en Inglés | MEDLINE | ID: mdl-38589966

RESUMEN

BACKGROUND: Diabetes mellitus is the third most prevalent chronic metabolic disorder and a significant contributor to disability and impaired quality of life globally. Diabetes self-management coaching is an emerging empowerment strategy for individuals with type 2 diabetes, enabling them to achieve their health and wellness goals. The current study aims to determine the feasibility of a diabetes self-management coaching program and its preliminary effectiveness on the clinical and psychosocial outcomes in the Ethiopian primary healthcare context. METHODS: The study will employ a mixed-method feasibility randomized controlled trial design. Forty individuals with type 2 diabetes will be randomly allocated to treatment and control groups using block randomization. The primary feasibility outcomes include acceptability, eligibility, recruitment, and participant retention rates, which will be computed using descriptive analysis. The secondary outcomes are self-efficacy, self-care activity, quality of life, and glycated hemoglobin A1c. For normally distributed continuous variables, the mean difference within and between the groups will be determined by paired sample Student t-test and independent sample Student t-test, respectively. Non-parametric tests such as the Mann-Whitney U test, the Wilcoxon signed rank test, and the Friedman analysis of variance test will determine the median difference for variables that violated the normality assumption. A repeated measure analysis of variance will be considered to estimate the variance between the baseline, post-intervention, and post-follow-up measurements. A sample of 10 volunteers in the treatment group will participate in the qualitative interview to explore their experience with the diabetes self-management coaching program and overall feasibility. The study will follow a qualitative content analysis approach to analyze the qualitative data. Qualitative and quantitative findings will be integrated using a joint display technique. DISCUSSION: Evidence reveals diabetes self-management coaching programs effectively improve HbA1c, self-efficacy, self-care activity, and quality of life. This study will determine the feasibility of a future large-scale randomized controlled trial on diabetes self-management coaching. The study will also provide evidence on the preliminary outcomes and contribute to improving the diabetes self-management experience and quality of life of individuals with type 2 diabetes. TRIAL REGISTRATION: The trial was registered online at ClinicalTrials.gov on 12/04/2022 and received a unique registration number, NCT05336019, and the URL of the registry is https://beta. CLINICALTRIALS: gov/study/NCT05336019 .

5.
Patient Educ Couns ; 115: 107885, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37473604

RESUMEN

OBJECTIVE: To identify factors that influence enrollment in and attendance of chronic disease self-management (CDSM) group programs. METHODS: A scoping review of peer-reviewed publications that reported on factors of enrollment or attendance in group CDSM programs for adults with any type of chronic condition. Screening was completed by two reviewers and data extraction was checked for accuracy. Data were summarized and key themes were identified in collaboration with the study team. RESULTS: Following screening, 52 of 2774 articles were included. Attendance rates that varied from 10.4-98.5% (mean =72.5%). There is considerable overlap between enrollment and attendance factors. These included Competing Commitments, Logistics, Personal characteristics, Perception of illness/health status, Health service provision, and Group dynamics. CONCLUSIONS: Varied and individualized factors can facilitate or impede enrollment or attendance in group CDSM programs. Consideration of these factors and tailoring of programs is needed to facilitate patient ability to take part. Participatory co-design is a growing approach to ensure programs meet individual and community needs. More research is needed to identify the specific impact of using codesign on enrollment and attendance in group CDSM programs. PRACTICE IMPLICATIONS: Including community members and service users in design and implementation may enhance CDSM program access.


Asunto(s)
Automanejo , Adulto , Humanos , Enfermedad Crónica
6.
Am J Geriatr Psychiatry ; 31(10): 767-782, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37169708

RESUMEN

BACKGROUND: The worldwide annual prevalence of anxiety in older adults is estimated to be between 6% and 10%. Emotion Focused Mindfulness Therapy (EFMT) is a mindfulness-based group intervention that has been demonstrated to reduce symptoms of anxiety in community dwelling adults. No study has yet assessed EFMT for older adults with late-life anxiety. The aim of this study was to determine the feasibility of video-delivered group EFMT for older adults living in community settings, a novel and potentially scalable intervention. METHODS: This was a feasibility randomized controlled trial (RCT) of 48 older adults (≥55 years old), recruited through primary care, community organizations and snowball methods. Participants were randomized to group EFMT delivered by Zoom vs. a wait-list control. Data were collected at baseline (T1), 9 weeks following baseline (T2, primary study endpoint) and 17 weeks following baseline (T3). Random allocation was conducted immediately after each group of 12 participants had been enrolled into the trial, with groups beginning on a rolling basis each time a block of 12 participants had been enrolled. The main efficacy outcome examined changes over time to anxiety. RESULTS: Recruitment was successfully completed in 32 weeks. Enrollment was calculated at 62.3% (48 of 77 people screened). Retention (80.0%) and adherence (100.0% for intervention group participants) were excellent. The EFMT group had significant improvements in anxiety at T2 compared to the wait-list control group (-3.47 [4.12] vs.-1.22 [3.25] points, p = 0.05). CONCLUSIONS: Virtually-delivered EFMT appears to be a feasible, acceptable, and efficacious group treatment to improve late-life anxiety.


Asunto(s)
Atención Plena , Humanos , Anciano , Atención Plena/métodos , Depresión/psicología , Ansiedad/terapia , Ansiedad/psicología , Trastornos de Ansiedad/terapia , Resultado del Tratamiento
7.
Scand J Occup Ther ; 30(5): 684-692, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-35298324

RESUMEN

BACKGROUND: Identifying the meaningful goals of people with multiple sclerosis (PwMS) can facilitate tailored treatment plans. OBJECTIVES: To describe and compare the goals set by PwMS during two interventions, and explore the strategies used to meet their goals, the barriers and facilitators influencing goal achievement. METHODS: Data from 56 community-dwelling PwMS were used in this secondary analysis: 45 used an interactive fatigue self-management website (MS INFoRm), and 11 received MS INFoRm coupled with occupational performance coaching (OPC) for 3 months. The International Classification of Functioning, Disability and Health (ICF) was used to map and compare the goals, strategies, facilitators and obstacles to goal achievement between the groups. Goals were also evaluated for being Specific, Measurable, Attainable, Relevant and Timely (SMART). RESULTS: Most goals were related to 'looking after one's health' (n = 35) and 'recreation and leisure' (n = 17). Participants who received OPC set more SMART goals (75 vs. 24%, p < 0.01). Fatigue management strategies were identified. Personal and environmental factors were found as facilitators and obstacles to goal achievement. CONCLUSION AND SIGNIFICANCE: Coaching can help PwMS with goal setting, and to adapt strategies to achieve their goals. Increased awareness of goals set by PwMS may equip clinicians to better assess their clients' needs.


Asunto(s)
Esclerosis Múltiple , Humanos , Esclerosis Múltiple/complicaciones , Objetivos , Motivación , Actividades Recreativas , Fatiga/etiología , Fatiga/terapia
8.
Disabil Rehabil ; 45(2): 344-375, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-35085058

RESUMEN

PURPOSE: Peer-based interventions are increasingly popular and cost-effective therapeutic opportunities to support others experiencing similar life circumstances. However, little is known about the similarities and differences among peer-based interventions and their outcomes for people with neurological conditions. This scoping review aims to describe and compare the characteristics of existing peer-based interventions for adults with common neurological conditions. MATERIALS AND METHODS: We searched MEDLINE, CINAHL, PsychInfo, and Embase for research on peer-based interventions for individuals with brain injury, Parkinson's, multiple sclerosis, spinal cord injury, and stroke up to June 2019. The search was updated in March 2021. Fifty-three of 2472 articles found were included. RESULTS: Characteristics of peer-based intervention for this population vary significantly. They include individual and group-based formats delivered in-person, by telephone, or online. Content varied from structured education to tailored approaches. Participant outcomes included improved health, confidence, and self-management skills; however, these varied based on the intervention model. CONCLUSION: Various peer-based interventions exist, each with its own definition of what it means to be a peer. Research using rigorous methodology is needed to determine the most effective interventions. Clear definitions of each program component are needed to better understand the outcomes and mechanism of action within each intervention.IMPLICATIONS FOR REHABILITATIONRehabilitation services can draw on various peer support interventions to add experiential knowledge and support based on shared experience to enhance outcomes.Fulfilling the role of peer mentor may be beneficial and could be encouraged as part of the rehabilitation process for people with SCI, TBI, Stroke, PD, or MS.In planning peer-based interventions for TBI, Stroke, SCI, PD, and MS populations, it is important to clearly define intervention components and evaluate outcomes to measure the impact of the intervention.


Asunto(s)
Lesiones Encefálicas , Traumatismos de la Médula Espinal , Accidente Cerebrovascular , Adulto , Humanos , Grupo Paritario , Accidente Cerebrovascular/terapia
9.
Can J Occup Ther ; 90(1): 15-24, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36266930

RESUMEN

Background: Patients with heart failure (HF) usually experience functional disabilities and face participation challenges. Self-care behavior is an essential component of long-term management of HF. Purpose: This study aims to investigate the effect of occupational performance coaching (OPC) on self-care behaviors and participation in people with HF. Method: This study is a parallel group, single-blind, randomized controlled trial of 44 adults with HF, to evaluate the efficacy of OPC. Patients will be randomly allocated (1:1) into two groups. Both groups will receive usual self-care education and the intervention group will receive eight weekly sessions of OPC as well. We will measure the primary and secondary outcomes at baseline, 8, and 12 weeks after the intervention initiation. Implications: If OPC is superior to usual self-care education on improving self-care behavior and participation, the finding will support the integration of OPC into practice to improve participation and self-care behaviors of HF patients.


Asunto(s)
Insuficiencia Cardíaca , Tutoría , Terapia Ocupacional , Humanos , Adulto , Método Simple Ciego , Insuficiencia Cardíaca/terapia , Ensayos Clínicos Controlados Aleatorios como Asunto
10.
Aging Ment Health ; 27(6): 1045-1055, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35912637

RESUMEN

OBJECTIVE: Older adults are interested in mindfulness-based interventions with a meditation component for late life anxiety. This review examined the effectiveness of existing mindfulness-based interventions with a meditation component. METHODS: This systematic review was registered with the Joanna Briggs Institute on 2021-05-17, was guided by Joanna Briggs Institute methodology and followed the PRISMA framework. Peer-reviewed randomized control trials were reviewed. A systematic literature search was conducted, using the following databases: MEDLINE (Ovid), Embase, Cochrane Database of Systematic Reviews, PsycINFO, CINAHL (EBSCO), and AMED. RESULTS: Of 2709 studies screened, seven eligible randomized controlled trials were included representing 355 participants. Sample sizes ranged from 36 to 141. Mindfulness-based meditation interventions used varied. Regardless of the mindfulness-based meditation intervention used, a reduction in symptoms of anxiety in participants was reported post-intervention. Results are reported through narrative summary and tables. CONCLUSIONS: Based on the emerging literature of randomized controlled trials, mindfulness-based interventions with a meditation component appear to be promising in reducing symptoms of anxiety in older adults. These findings demonstrate a need for further randomized controlled trials to guide clinical practice.


Asunto(s)
Meditación , Atención Plena , Humanos , Anciano , Atención Plena/métodos , Meditación/métodos , Ensayos Clínicos Controlados Aleatorios como Asunto , Ansiedad/terapia , Trastornos de Ansiedad
11.
Afr J Disabil ; 11: 1002, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36246483

RESUMEN

Background: Ethiopia, as a State Party to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), has committed to upholding the rights of people with disabilities in Ethiopia. There is little evidence, however, reflecting the impact of this commitment on the lived experiences of people with disabilities in Ethiopia. Objectives: This study sought to uncover how the experiences of participation and activity shape the enactment of rights for Ethiopians with disabilities as enshrined in the UNCRPD. Method: Analysis of 25 qualitative interviews with people with disabilities and family members living in Ethiopia used a reflexive thematic analysis approach to arrive at central themes. Results: People with disabilities in Ethiopia experience marginalisation, distress and practical challenges in both routine daily activities and participation in broader social roles and opportunities. These experiences affect their ability to claim many of the rights afforded by the UNCRPD. Conclusion: Despite legislative efforts to bring about change in Ethiopia, people with disabilities continue to live on the social margins. A meaningful change will require substantial allocation of needed resources by the Ethiopian government to support national-level programmes and policy change. It is critical that people with disabilities and their families are engaged in receiving relevant support, and serve as change leaders. Contribution: This study illustrates how marginalisation, distress and practical challenges in daily activities and social participation arise and are sustained for people with disabilities in Ethiopia. The findings can help to inform the country's efforts to enact the rights of Ethiopians with disabilities as enshrined in the United Nations Convention on the Rights of Persons with Disabilities.

12.
Clin Rehabil ; 36(9): 1244-1256, 2022 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-35673263

RESUMEN

OBJECTIVE: To determine the feasibility of adding coaching sessions to a website (MS INFoRM) that supports self-directed fatigue management for people with multiple sclerosis (PwMS). DESIGN: Double-blind, parallel-group feasibility study. PARTICIPANTS AND SETTING: Twenty-six PwMS, who experienced severe fatigue (fatigue severity scale > 5.4), were recruited from participants who were ineligible for the main trial testing on the MS INFoRM website. INTERVENTION: Six 45-to-60-min sessions of one-on-one coaching plus access to the MS INFoRm website compared to two check-in phone calls plus access to the MS INFoRm website. Both study arms took place over 3 months. MAIN MEASURES: Feasibility parameters included proportion eligible of those screened; proportion consented; missing data; retention and adherence rates. Acceptability was explored through qualitative interviews. Secondary outcomes (self-efficacy and fatigue impact) were measured at baseline and post-intervention. RESULTS: 76 people were invited to participate in this add-on study. 40 were interested and screened: 32 were eligible, 26 consented, and were randomized (mean age: 48.5 yrs (SD: 8.7), mean disease duration: 11.5 yrs). Retention was 85% (22 out of 26). Coaching adherence was high (86% attended ⩾ 5 sessions). At 3 months, people in the intervention group showed more improvements in self-efficacy and fatigue impact compared to the comparison group, however, the difference was not statistically significant (p = 0.471 and p = 0.147, respectively). The intervention was well-received by the participants and there were no adverse events. CONCLUSION: Combining one-on-one coaching sessions along with web-based interventions is feasible and appreciated by the participants, and worth exploring further in a larger trial.


Asunto(s)
Tutoría , Esclerosis Múltiple , Automanejo , Método Doble Ciego , Estudios de Factibilidad , Humanos , Persona de Mediana Edad , Esclerosis Múltiple/complicaciones , Autoeficacia
13.
Scand J Occup Ther ; 29(4): 325-336, 2022 May.
Artículo en Inglés | MEDLINE | ID: mdl-34181505

RESUMEN

BACKGROUND: Stroke impacts psychosocial well-being and engagement in occupation. Psychosocial interventions reduce depression and anxiety but may not impact occupation. Knowledge of key processes and components of community psychosocial stroke interventions can inform future intervention development. AIM/OBJECTIVE(S): To determine the essential elements common to three psychosocial interventions for stroke survivors. MATERIAL(S) AND METHOD(S): Concept maps were created for three community psychosocial stroke interventions based on published literature and communication with researchers who tested the intervention with stroke survivors. The concept maps were then compared to identify common elements. Ongoing communication with researchers ensured accurate representation of each respective intervention. RESULTS: Similarities in intervention processes and components included support for autonomy; individualized information exchange; coping, life skill development and adaptation support; competence development; and the incorporation of goals. Differences included intervention delivery (individual versus group), and the avenues in which psychosocial needs are addressed (occupation versus dialogue). CONCLUSIONS: Concept mapping identified similarities among the three interventions that can be best understood using self-determination theory. Clinicians may utilize findings revealed in the process to inform evidence-based psychosocial stroke interventions. SIGNIFICANCE: Knowledge of key 'active ingredients' for psychosocial community stroke interventions, can be used to guide clinical reasoning and inform development of interventions.


Asunto(s)
Intervención Psicosocial , Accidente Cerebrovascular , Adaptación Psicológica , Ansiedad , Humanos , Accidente Cerebrovascular/psicología , Sobrevivientes
14.
Pilot Feasibility Stud ; 7(1): 169, 2021 Sep 03.
Artículo en Inglés | MEDLINE | ID: mdl-34479632

RESUMEN

BACKGROUND: The worldwide prevalence of anxiety in older adults is estimated at between 6 and 10%. In Canada, adults 65 and older experience anxiety at a rate of 6.4%, affecting more than 300,000 people. Anxiety in older adults has been linked to difficulties retaining new information and engaging in instrumental daily activities of living. Due to COVID-19 restrictions, novel methods of delivering therapy programs remotely are needed; however, data is limited. There is some evidence that older adults prefer non-pharmacological approaches for anxiety that can be delivered in the community. Emotion-focused mindfulness therapy (EFMT) is a mindfulness-based intervention that emphasizes meditation and observing thoughts and emotions as they arise. This emphasis has been demonstrated to reduce symptoms of anxiety in general populations. This study aims to evaluate the feasibility of EFMT with older adults. METHODS: This pilot feasibility randomized controlled trial will use a wait list control trial design. Due to COVID-19 restrictions, we will use telehealth delivery via Zoom rather than in-person delivery. The first 48 people to meet the eligibility criteria will be randomly allocated to either receive EFMT immediately, or in approximately 8 weeks time from enrollment (1:1 allocation ratio). Data will be collected at baseline, 8 weeks following baseline, and 16 weeks following baseline. The primary outcomes will determine the feasibility of the intervention based on recruitment, enrolment, retention, and adherence to all components of the intervention. The secondary outcome will be changes to anxiety over time. DISCUSSION: The results of this trial will determine the feasibility and potential effectiveness of video-delivered EFMT for late-life anxiety compared to no treatment. If the results are promising, a larger randomized controlled trial may be conducted. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04415528 . Registered on June 4, 2020 PROTOCOL VERSION: Protocol version 2, January 2, 2021.

15.
Br J Occup Ther ; 84(8): 488-496, 2021 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-34381289

RESUMEN

INTRODUCTION: Sustaining a stroke has a devastating, long-term impact on participation in everyday life. Despite the recognition of participation as a key outcome of stroke rehabilitation, there are few effective interventions that address participation. Occupational performance coaching is a promising intervention designed to improve participation among stroke survivors. Delivery of occupational performance coaching using telerehabilitation could improve access. This study examined the feasibility, acceptability and potential efficacy of telerehabilitation occupational performance coaching. METHOD: A single-case experimental design was used. Six community-dwelling stroke survivors received 10 sessions of telerehabilitation occupational performance coaching over 16 weeks. We examined the feasibility and acceptability of telerehabilitation occupational performance coaching, improvement in performance and satisfaction with identified goals. RESULTS: Telerehabilitation occupational performance coaching was feasible and acceptable to deliver; participants who started the intervention completed it and reported high satisfaction and a strong therapeutic relationship. All participants experienced technological issues that required resolution. Goal-performance and/or satisfaction improved for five of six participants. Sixty-four percent of goals showed trends for improvement and 43% showed significant improvements. CONCLUSIONS: Findings support the feasibility and acceptability of telerehabilitation occupational performance coaching, along with its efficacy for improving performance and satisfaction with performance of goals. Further research is needed to prove the effectiveness of telerehabilitation occupational performance coaching and to determine who may benefit most.

16.
Mov Disord ; 36(2): 398-406, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33280165

RESUMEN

BACKGROUND: Parkinson's disease (PD) is a chronic neurodegenerative disorder that challenges care provision. A multidisciplinary care model needs to be impactful, feasible, and viable economically for widespread utilization. Supportive evidence is lacking. OBJECTIVE: The objective of this study was to evaluate the implementation and impact of a pragmatic network for PD care, the Integrated Parkinson Care Network (IPCN). METHODS: A 6-month, pre-post design, single-center, phase 2 study for complex interventions for patients with newly diagnosed (<1 year) and advanced (diagnosis >8 years) PD was used to assess a patient-centered care model based on integrated care, self-management support, and technology-enabled care. We comprehensively assessed the implementation of care paths, change in selected health and care quality outcomes after the Integrated Parkinson Care Network program, and costs analyses. RESULTS: We recruited 100 participants in 6 months. Overall, the top care priorities were speech and communication (33.7%), anxiety and depression (31.6%), and mobility, balance, and falls (29.6%), and the most commonly (>45%) used resources were speech-language pathology, community seniors services, and physiotherapy. Care priorities were met successfully in 90.6% of the cases, and there was a positive change in the Parkinson's Disease Questionnaire-8 (2.7; 95% confidence interval, 0.4-5.0; statistically significant in the advanced group), the perception of support for chronic care (Patient Assessment of Chronic Illness Case score, 1.1; 95% confidence interval, 0.9-1.4), and self-management (5As score, 1.2; 95% confidence interval, 1.0-1.4). The total cost of the Integrated Parkinson Care Network was C$1367 per patient. CONCLUSIONS: A pragmatic development of a care delivery network based on integrated care and self-management support is promising for its feasibility, impact, and a sustainable cost. © 2020 International Parkinson and Movement Disorder Society.


Asunto(s)
Prestación Integrada de Atención de Salud , Enfermedad de Parkinson , Automanejo , Humanos , Enfermedad de Parkinson/terapia , Proyectos Piloto , Encuestas y Cuestionarios
17.
Patient Educ Couns ; 104(1): 136-142, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-32660740

RESUMEN

OBJECTIVES: To evaluate the acceptability of the Integrated Parkinson's disease Care Network (IPCN) from the perspectives of persons with Parkinson's disease (PD), their care partners and healthcare providers, including identification of important components and areas for improvement. METHODS: We used a descriptive qualitative approach with interviews (n = 15) and focus groups (n = 31) with persons with PD who were newly diagnosed and those with advanced PD, care partners and healthcare providers. Questions were designed to gather feedback on each component of the IPCN. RESULTS: Four overarching categories emerged: CCI support, New knowledge, Goal identification and achievement, and Readiness for self-management. These represent important aspects of participants' experiences of the IPCN. CONCLUSION: Most participants experienced the IPCN as helpful for managing living with PD and accessing resources. The relationship with the CCI was a critical component; the CCI was perceived to be knowledgeable, accessible, and responsive. PRACTICE IMPLICATIONS: The IPCN is a model to promote coordinated care and self-management. This study supports the key components of the IPCN as important for supporting patients in managing their lives with PD. Incorporation of other strategies to support self-management may enhance the model. Availability of and access to community resources was identified as an ongoing challenge.


Asunto(s)
Enfermedad de Parkinson , Automanejo , Grupos Focales , Personal de Salud , Humanos , Enfermedad de Parkinson/terapia
18.
JBI Evid Synth ; 18(12): 2666-2672, 2020 12.
Artículo en Inglés | MEDLINE | ID: mdl-32813422

RESUMEN

OBJECTIVE: The objectives of this scoping review are to i) identify adaptive stroke rehabilitation interventions using metacognitive or self-management approaches targeting participation as an outcome; ii) determine the explicit and implicit theories underlying these interventions; and iii) ascertain the elements in each intervention. This review will develop a catalogue of these interventions, improving the understanding of how these interventions work, thereby facilitating efficient development and testing of participation-focused interventions. INTRODUCTION: Stroke rehabilitation interventions can be categorized as those aiming to correct impairment and those seeking participation improvement despite impairment. Impairment-focused interventions include a relatively small number of well-defined elements, generally based on motor learning or other types of learning theory. Participation-focused interventions span a large group of diverse interventions. The underlying theory is typically varied and often implicit, but many of these interventions are based on metacognitive or self-management approaches. An examination of the underlying theory and elements of participation-focused interventions would allow researchers to more effectively advance the science of these approaches. INCLUSION CRITERIA: The review will include published papers describing rehabilitation interventions using metacognitive or self-management approaches to improve participation among adults who have experienced a stroke. METHODS: The search will include JBI Evidence-Based Practice Database, MEDLINE, Embase, CINAHL, PsycINFO, OTSeeker, and PEDro databases. Studies will be selected according to a three-step process, including i) managing search results and removing duplicates, ii) title and abstract screening, and iii) full text screening. The extracted data will be presented in table form and narrative summary, aligning with the objectives and scope of this review.


Asunto(s)
Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Adulto , Humanos
19.
Qual Life Res ; 28(5): 1355-1364, 2019 May.
Artículo en Inglés | MEDLINE | ID: mdl-30600492

RESUMEN

BACKGROUND: Parkinson's disease (PD) is a progressive neurological illness that impacts various aspects of life. Integration of medical and self-management in a collaborative approach to care is needed to enhance functioning and the quality of life of PD patients. In developing an integrated care program at a tertiary PD clinic, we used a co-design process to gather stakeholder input. METHODS: This is a cross-sectional mixed methods study using surveys and interviews. Patient and caregiver participants from the clinic completed two questionnaires to evaluate perceived receipt of self-management support (Patient Assessment of Care for Chronic Conditions) and activation for managing their health condition (Patient or Caregiver Activation Measure®). A subset of these participants and healthcare providers took part in semi-structured interviews. Survey data were described and tested for relationships between patient characteristics and questionnaire scores using Spearman's rank-order correlation. Interviews were analyzed using conventional content analysis. RESULTS: Fifty-seven PD patients and thirty caregivers completed the questionnaires. Thirteen patients, six caregivers, and six healthcare providers were interviewed. 58% of participants were moderately to highly activated to manage their lives with PD. Participants' perceptions of self-management support varied but was lacking in dimensions of goal-setting and follow-up support/coordination. Qualitative analysis revealed four overarching themes related to experiences of managing PD: activation, self-management support, coordinated care, and access to services. CONCLUSIONS: This first study to explore patient activation in PD found high levels of activation but moderate to low levels of self-management support. The co-design process highlighted important aspects of a more collaborative approach to care.


Asunto(s)
Actividades Cotidianas/psicología , Manejo de la Enfermedad , Enfermedad de Parkinson/psicología , Calidad de Vida/psicología , Autocuidado/psicología , Anciano , Cuidadores , Estudios Transversales , Femenino , Personal de Salud , Humanos , Masculino , Persona de Mediana Edad , Enfermedad de Parkinson/terapia , Encuestas y Cuestionarios
20.
Scand J Occup Ther ; 26(5): 315-324, 2019 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-29671662

RESUMEN

BACKGROUND: Client-centred goal setting is central to the process of enabling occupation. Yet, there are multiple barriers to incorporating client-centred goal setting in practice. We sought to determine what might facilitate or impede the formation of client-centred goals in a context highly supportive of client-centred goal setting Methods: We used conversational analysis to examine goal-setting conversations that took place during a pilot trial of Occupational Performance Coaching for stroke survivors. Twelve goal-setting sessions were purposively selected, transcribed, and analyzed according to conventions for conversation analysis. RESULTS: Two main types of interactions were observed: introductory actions and goal selection actions. Introductory actions set the context for goal setting and involved sharing information and seeking clarification related to goal requirements and clients' occupational performance competencies. Goal selection actions were a series of interactions whereby the goals were explored, endorsed or dropped. CONCLUSION: Client-centred occupational performance goals may be facilitated through placing goal-setting in the context of life changes and lifelong development of goals, and through listening to clients' stories. Therapists may improve consistency in adoption of client-suggested goals through clarifying meaning attached to goals and being attuned to power dynamics and underlying values and beliefs around risk and goal attainability.


Asunto(s)
Objetivos , Motivación , Terapia Ocupacional/métodos , Psicoterapia Centrada en la Persona/métodos , Rehabilitación de Accidente Cerebrovascular/métodos , Sobrevivientes/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad
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