scholarly journals Shared decision-making when choosing the feeding method of patients with severe dementia: a systematic review

2018 ◽  
Vol 21 (2) ◽  
pp. 232-242
Author(s):  
Rodrigo D’Agostini Derech ◽  
Fabricio de Souza Neves

Abstract Objectives: To evaluate whether the use of a support tool for shared decision-making in the choice of feeding method for patients with severe dementia can benefit the patient/caregiver dyad, and to evaluate the quality of the decision-making process. Method: A search was performed in the Medline, LILACS, IBECS, SciELO, WHOLIS databases for randomized controlled trials, whether double-blind or otherwise, and quasi-experimental, cohort, case-control, or cross-sectional observational studies in Portuguese, Spanish, English and French. Results: Eight articles were found that showed that the use of a decision support tool, as an aid for the shared decision-making method, is beneficial as it reduces decisional conflict and increases the knowledge of caregivers about the subject. The quality of the decision-making process is unsatisfactory due to the low frequency of discussions between caregivers and the health team and the poor evaluation of caregivers about the participation of the team in the decision-making process. Conclusion: Decision support tools provide benefits for caregivers/patients undergoing the difficult task of deciding about feeding methods. Findings suggest that the current quality of decision-making is inadequate.

Author(s):  
Dawn M. Magnusson ◽  
Irena Shwayder ◽  
Natalie J. Murphy ◽  
Lindsay Ollerenshaw ◽  
Michele Ebendick ◽  
...  

Purpose Despite increasing standardization of developmental screening and referral processes, significant early intervention service disparities exist. The aims of this article are to: (a) describe methods used to develop a decision support tool for caregivers of children with developmental concerns, (b) summarize key aspects of the tool, and (c) share preliminary results regarding the tool's acceptability and usability among key stakeholders. Method Content and design of the decision support tool was guided by a systematic process outlined by the International Patient Decision Aid Standards (IPDAS) Collaborative. Three focus group interviews were conducted with caregivers ( n = 7), early childhood professionals ( n = 28), and a mix of caregivers and professionals ( N = 20) to assess caregiver decisional needs. In accordance with the IPDAS, a prototype of the decision support tool was iteratively cocreated by a subset of caregivers ( n = 7) and early child health professionals ( n = 5). Results The decision support tool leverages images and plain language text to guide caregivers and professionals along key steps of the early identification to service use pathway. Participants identified four themes central to shared decision making: trust, cultural humility and respect, strength-based conversations, and information-sharing. End-users found the tool to be acceptable and useful. Conclusions The decision support tool described offers an individualized approach for exploring beliefs about child development and developmental delay, considering service options within the context of the family's values, priorities, and preferences, and outlining next steps. Additional research regarding the tool's effectiveness in optimizing shared decision-making and reducing service use disparities is warranted.


10.2196/14629 ◽  
2020 ◽  
Vol 9 (5) ◽  
pp. e14629
Author(s):  
Dorra Rakia Allegue ◽  
Dahlia Kairy ◽  
Johanne Higgins ◽  
Philippe Archambault ◽  
Francois Michaud ◽  
...  

Background Exergames have the potential to provide an accessible, remote approach for poststroke upper extremity (UE) rehabilitation. However, the use of exergames without any follow-up by a health professional could lead to compensatory movements during the exercises, inadequate choice of difficulty level, exercises not being completed, and lack of motivation to pursue exercise programs, thereby decreasing their benefits. Combining telerehabilitation with exergames could allow continuous adjustment of the exercises and monitoring of the participant’s completion and adherence. At present, there is limited evidence regarding the feasibility or efficacy of combining telerehabilitation and exergames for stroke rehabilitation. Objective This study aims to (1) determine the preliminary efficacy of using telerehabilitation combined with exergames on UE motor recovery, function, quality of life, and motivation in participants with chronic stroke, compared with conventional therapy (the graded repetitive arm supplementary program; GRASP); (2) examine the feasibility of using the technology with participants diagnosed with stroke at home; and (3) identify the obstacles and facilitators for its use by participants diagnosed with stroke and stroke therapists and understand the shared decision-making process. Methods A mixed methods study protocol is proposed, including a randomized, blinded feasibility trial with an embedded multiple case study. The intervention consists of the provision of a remote rehabilitation program, during which participants will use the Jintronix exergame for UE training and the Reacts Application to conduct videoconferenced sessions with the therapists (physical or occupational therapists). We plan to recruit 52 participants diagnosed with stroke, randomly assigned to a control group (n=26; 2-month on-paper home exercise program: the GRASP with no supervision) and an experimental group (n=26; 2-month home program using the technology). The primary outcome is the Fugl-Meyer UE Assessment, a performance-based measure of UE impairment. The secondary outcomes are self-reported questionnaires and include the Motor Activity Log-28 (quality and frequency of use of the UE), Stroke Impact Scale-16 (the quality of life), and Treatment Self-Regulation Questionnaire (motivation). Feasibility data include process, resources, management, and scientific outcomes. Qualitative data will be collected by interviews with both participants and therapists. Results At present, data collection was ongoing with one participant who had completed the exergame- telerehabilitation based intervention. We expect to collect preliminary efficacy data of this technology on the functional and motor recovery of the UE, following a stroke; collect feasibility data with users at home (adherence, safety, and technical difficulties); and identify the obstacles and facilitators for the technology use and understand the shared decision-making process. Conclusions This paper describes the protocol underlying the study of a telerehabilitation-exergame technology to contribute to understanding its feasibility and preliminary efficacy for UE stroke rehabilitation. Trial Registration ClinicalTrials.gov NCT03759106; http://clinicaltrials.gov/show/NCT03759106. International Registered Report Identifier (IRRID) DERR1-10.2196/14629


2019 ◽  
Author(s):  
Dorra Rakia Allegue ◽  
Dahlia Kairy ◽  
Johanne Higgins ◽  
Philippe Archambault ◽  
Francois Michaud ◽  
...  

BACKGROUND Exergames have the potential to provide an accessible, remote approach for poststroke upper extremity (UE) rehabilitation. However, the use of exergames without any follow-up by a health professional could lead to compensatory movements during the exercises, inadequate choice of difficulty level, exercises not being completed, and lack of motivation to pursue exercise programs, thereby decreasing their benefits. Combining telerehabilitation with exergames could allow continuous adjustment of the exercises and monitoring of the participant’s completion and adherence. At present, there is limited evidence regarding the feasibility or efficacy of combining telerehabilitation and exergames for stroke rehabilitation. OBJECTIVE This study aims to (1) determine the preliminary efficacy of using telerehabilitation combined with exergames on UE motor recovery, function, quality of life, and motivation in participants with chronic stroke, compared with conventional therapy (the graded repetitive arm supplementary program; GRASP); (2) examine the feasibility of using the technology with participants diagnosed with stroke at home; and (3) identify the obstacles and facilitators for its use by participants diagnosed with stroke and stroke therapists and understand the shared decision-making process. METHODS A mixed methods study protocol is proposed, including a randomized, blinded feasibility trial with an embedded multiple case study. The intervention consists of the provision of a remote rehabilitation program, during which participants will use the Jintronix exergame for UE training and the Reacts Application to conduct videoconferenced sessions with the therapists (physical or occupational therapists). We plan to recruit 52 participants diagnosed with stroke, randomly assigned to a control group (n=26; 2-month on-paper home exercise program: the GRASP with no supervision) and an experimental group (n=26; 2-month home program using the technology). The primary outcome is the Fugl-Meyer UE Assessment, a performance-based measure of UE impairment. The secondary outcomes are self-reported questionnaires and include the Motor Activity Log-28 (quality and frequency of use of the UE), Stroke Impact Scale-16 (the quality of life), and Treatment Self-Regulation Questionnaire (motivation). Feasibility data include process, resources, management, and scientific outcomes. Qualitative data will be collected by interviews with both participants and therapists. RESULTS At present, data collection was ongoing with one participant who had completed the exergame- telerehabilitation based intervention. We expect to collect preliminary efficacy data of this technology on the functional and motor recovery of the UE, following a stroke; collect feasibility data with users at home (adherence, safety, and technical difficulties); and identify the obstacles and facilitators for the technology use and understand the shared decision-making process. CONCLUSIONS This paper describes the protocol underlying the study of a telerehabilitation-exergame technology to contribute to understanding its feasibility and preliminary efficacy for UE stroke rehabilitation. CLINICALTRIAL ClinicalTrials.gov NCT03759106; http://clinicaltrials.gov/show/NCT03759106. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/14629


2017 ◽  
Vol 100 (7) ◽  
pp. 1374-1381 ◽  
Author(s):  
Christine Dehlendorf ◽  
Judith Fitzpatrick ◽  
Jody Steinauer ◽  
Lawrence Swiader ◽  
Kevin Grumbach ◽  
...  

Author(s):  
Geert van der Sluis ◽  
Jelmer Jager ◽  
Ilona Punt ◽  
Alexandra Goldbohm ◽  
Marjan J. Meinders ◽  
...  

Background. To gain insight into the current state-of-the-art of shared decision making (SDM) during decisions related to pre and postoperative care process regarding primary total knee replacement (TKR). Methods. A scoping review was performed to synthesize existing scientific research regarding (1) decisional needs and preferences of patients preparing for, undergoing and recovering from TKR surgery, (2) the relation between TKR decision-support interventions and SDM elements (i.e., team talk, option talk, and decision talk), (3) the extent to which TKR decision-support interventions address patients’ decisional needs and preferences. Results. 2526 articles were identified, of which 17 articles met the inclusion criteria. Of the 17 articles, ten had a qualitative study design and seven had a quantitative study design. All included articles focused on the decision whether to undergo TKR surgery or not. Ten articles (all qualitative) examined patients’ decisional needs and preferences. From these, we identified four domains that affected the patients’ decision to undergo TKR: (1) personal factors, (2) external factors, (3) information sources and (4) preferences towards outcome prediction. Seven studies (5) randomized controlled trials and 2 cohort studies) used quantitative analyses to probe the effect of decision aids on SDM and/or clinical outcomes. In general, existing decision aids did not appear to be tailored to patient needs and preferences, nor were the principles of SDM well-articulated in the design of decision aids. Conclusions. SDM in TKR care is understudied; existing research appears to be narrow in scope with limited relevance to established SDM principles and the decisional needs of patients undertaking TKR surgery.


2021 ◽  
Author(s):  
Isabelle Gaboury ◽  
Michel Tousignant ◽  
Hélène Corriveau ◽  
Matthew Menear ◽  
Guylaine Le Dorze ◽  
...  

BACKGROUND Strong evidence supports beginning stroke rehabilitation as soon as the patient’s medical status has stabilized and continuing following discharge from acute care. However, adherence to rehabilitation treatments over the rehabilitation phase has been shown to be suboptimal. OBJECTIVE Objective: The aim of this study is to assess the impact of a telerehabilitation platform on stroke patients’ adherence to a rehabilitation plan and on their level of reintegration to normal social activities, in comparison with usual care. The primary outcome is patient adherence to stroke rehabilitation (up to 12 weeks), which is hypothesized to influence reintegration to normal living. Secondary outcomes for patients include functional recovery and independence, depression, adverse events related to telerehabilitation, use of services (up to 6 months), perception of interprofessional shared decision making, and quality of services received. Interprofessional collaboration as well as quality of interprofessional shared decision making will be measured on clinicians. METHODS In this interrupted time series with a convergent qualitative component, rehabilitation teams will be trained to develop rehabilitation treatment plans that engage the patient and family, while taking advantage of a telerehabilitation platform to deliver the treatment. The intervention will entail 220 patients to receive stroke telerehabilitation with an interdisciplinary group of clinicians (telerehabilitation) versus face-to-face, standard of care (n = 110 patients). RESULTS Results: Our Research Ethics Board has approved the study in June 2020. Data collection for the control group is underway, with another year planned before we begin the intervention phase. CONCLUSIONS This study will contribute to minimize both knowledge and practice gaps, while producing robust, in-depth data on the factors related to the effectiveness of telerehabilitation in a stroke rehabilitation continuum. Findings will inform best practices guidelines regarding telecare services and the provision of telerehabilitation, including recommendations regarding effective interdisciplinary collaboration regarding stroke rehabilitation. CLINICALTRIAL ClinicalTrials.gov NCT04440215


2021 ◽  
pp. JDNP-D-20-00078
Author(s):  
Sybilla Myers ◽  
Christopher Kennedy

BackgroundPerceived health-related quality of life (HRQOL) is fundamental to well-being and is a meaningful way to measure physical and mental health.Local ProblemNo standard method exists for measuring perceived HRQOL during the COVID-19 pandemic in participants as they attempt to improve their self-determined wellness goals. An implementation plan that considers the social distancing limitations imposed can be used to predict an individual’s likelihood of long-term success.MethodsDuring the four, 2-week plan-do-study-act (PDSA) cycles, the Social Cognitive Theory model informed the implementation of the four core interventions. To guide iterative changes, the data was analyzed through Excel and run charts.InterventionsThe four core interventions were the shared decision-making tool (SDMT), health mobile app tool (HMAT), wellness tracker tool (WTT), and the team engagement plan.ResultsAmong 28 participants, perceived quality of life increased by 70%, engagement in shared decision-making increased to 82%, app use and confidence increased to 85%, and goal attainment reached 81%.ConclusionsThe SDMT, health app, and wellness tracker created a methodical plan of accountability for increasing participant wellness. The contextual barrier of the COVID-19 pandemic added a negative wellness burden which was mitigated by creating a patient-centered culture of wellness.


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