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For HMV users, most healthcare costs were publicly supported or associated with family caregiving. Highest costs were incurred by the most dependent users. Understanding healthcare costs for HMV users will inform policy decisions to optimise resource allocation, helping individuals live at home while minimising caregiver burden.

Objective To synthesize the nature and extent of research on rehabilitation care provision to COVID‐19 (COVID) patients. Specifically, we aimed to: (1) Describe the impact of COVID on patients and associated rehabilitation needs; (2) Outline the adaptations and preparations required to enable the provision of COVID rehabilitation; (3) Describe the types of rehabilitation services and treatments provided to COVID patients; and (4) Identify barriers and facilitators to delivering COVID rehabilitation. Literature Survey We searched Medline, PsychINFO, Embase, and CINAHL on June 26 th , 2020 using key words such as “rehabilitation”, “physical medicine”, “allied health professionals” and variations of “COVID”. The search was updated on October 13 th , 2020. We included articles published in English and that focused on some aspect of COVID rehabilitation for adults. We excluded articles focused on pediatric populations and those not focused (or minimally focused) on rehabilitation for COVID patients. Methodology Data were charted based on article type (i.e. primary data, secondary data, guidelines). Key information extracted included: (i) COVID sequelae; (ii) rehabilitation adaptations; (iii) structure, function and content of rehabilitation services/programs; (iv) facilitators and/or barriers to providing COVID rehabilitation; and (v) recommendations for COVID rehabilitation programming. Data were synthesized narratively. Synthesis In total, 129 articles were included in the review that reported primary data (n=33), secondary data (n=82), and clinical practice/patient self‐management guidelines (n=13). Evidence begins to suggest that rehabilitation is necessary and valuable for addressing COVID‐related declines in health, function, and well‐being. Most articles recommended that an individualized rehabilitation program be provided across the continuum of care by an interdisciplinary team of professionals and that the nature and extent of rehabilitation be informed by the care setting and COVID severity. Most issues that challenged COVID rehabilitation delivery were directly addressed by the facilitators and adaptations identified. Conclusions Future recommendations include a greater emphasis on the psychosocial aspects of COVID rehabilitation, inclusion of families in rehabilitation planning, and the use of qualitative approaches to complement clinical data. This article is protected by copyright. All rights reserved.

Twitter has the potential to optimize research conduct, but more research is needed around the nature of study-related tweets and strategies for optimizing reach. In the context of our caregiving study, we aimed to describe the nature and extent of study-related tweets, the extent to which they were shared by others, and their potential reach. To do so, we conducted a secondary analysis of our Twitter recruitment. We aggregated and categorized study-related tweets and analyzed the reach of the 10 most retweeted tweets. Results indicated that of 71 caregivers, 27 were recruited via Twitter. General recruitment tweets were most-shared by users. Tweet reach ranged from 5273 to 62,144 users. Twitter caregivers were demographically comparable to non-Twitter caregivers but had higher Internet proficiency and fewer children. Overall, using a personal Twitter account can expand the reach of study recruitment. Future research should compare different recruitment strategies and explore characteristics that may challenge the heterogeneity of Twitter samples.

Purpose: Mindfulness-based interventions (MBIs) are effective treatments for stress, anxiety, and depression in PwMS. However, low adherence and high attrition may limit effectiveness. Qualitative research can provide important insights into MBI acceptability, accessibility, and implementation. This systematic review and meta-aggregation evaluated qualitative research findings on the use of MBIs for PwMS. Methods: Systematic searches were undertaken in six major electronic databases. Studies using qualitative or mixed methods were included. Two reviewers screened, data extracted, and critically appraised studies. Meta-aggregation was performed following the Joanna Briggs Institute approach, extracting findings, developing categories, and synthesizing findings. Results: Six eligible papers, including 136 PwMS were included in meta-aggregation. 136 findings were extracted, grouped into 17 categories, with four synthesized findings: (1) "accessing mindfulness," (2) "a sense of belonging," (3) "experiencing mindfulness," and ( 4) "making mindfulness more relevant and sustainable for PwMS." Conclusions: MBIs for PwMS need to take into consideration disability which can limit accessibility. Online MBIs (synchronous and asynchronous) appear acceptable alternatives to traditional face-to-face courses. However, PwMS benefit from shared (mindful) experiencing and highlight MBI instructors as crucial in helping them understand and practice mindfulness. Involving PwMS in design, delivery, and iterative refinement would make MBIs more relevant to those taking part. ä IMPLICATIONS FOR REHABILITATION 1. Both face-to-face and online Mindfulness-based interventions (MBIs) appear acceptable to PwMS and, ideally, people should be offered a choice in training modality. 2. PwMS derive benefit from undertaking MBIs with their peers, where a sense of camaraderie and belonging develop through shared (mindful) experiences. 3. Instructors delivering MBIs for PwMS should be knowledgeable about the condition; participants describe how the instructor has a key role in helping them practice mindfulness effectively in the context of unpleasant experiences associated with MS. 4. MBIs tailored for PwMS should include a pre-course orientation session, clearly articulate how mindfulness practices can help with MS, provide well-organized course materials in large font size, and deliver individual mindfulness practices flexibly depending on participant need.

Background Children using home mechanical ventilation (HMV) live at home with better quality of life, despite financial burden for their family. Previous studies of healthcare utilization and costs have not considered public and private expenditures, including family caregiver time. Our objective was to examine public and private healthcare utilization and costs for children using HMV, and variables associated with highest costs. Methods Longitudinal, prospective, observational cost analysis study (2012‐2014) collecting data on public and private (out‐of‐pocket, third‐party insurance, and caregiving) costs every 2 weeks for 6 months using the Ambulatory Home Care Record. Functional Independence Measure (FIM), WeeFIM, and Caregiving Impact Scale (CIS) were measured at baseline and study completion. Regression modeling examined a priori selected variables associated with monthly costs using Andersen and Newman's framework for healthcare utilization, relevant literature, and clinical expertise. Data are reported in 2015 Canadian dollars ($1CAD = $0.78USD). Results Forty two children and their caregivers were enrolled. Overall median (interquartile range) monthly healthcare cost was $12 131 ($8159‐$15 958) comprising $9929 (89%) family caregiving hours, $996 (9%) publicly funded, and $252 (2%) out‐of‐pocket (<1% third‐party insurance) costs. With higher FIM score (lower dependency), median costs were reduced by 4.5% (95% confidence interval: 8.3%‐0.5%), adjusted for age, sex, tracheostomy, and daily ventilation duration. Note: since the three cost categories did not sum to the total statistically derived median cost, the percentage of each category used the sum of median public + caregiver lost time + private out‐of‐pocket + third‐party insurance as the denominator. Conclusions For HMV children, most healthcare costs were due to family caregiving costs. More dependent children incur highest costs. The financial burden to family caregivers is substantial and needs to considered in future policy decisions related to pediatric HMV.

Structured summary 2Provide a structured summary that includes (as applicable): background, objectives, eligibility criteria, sources of evidence, charting methods, results, and conclusions that relate to the review questions and objectives.

Background Across Europe, Canada, Australia, and the United States, the prevalence of home mechanical ventilation (HMV) prevalence is 6.6-12.9 per 100,000. At-home ventilator-assisted individuals (VAIs) are often vulnerable and highly comorbid, requiring complex care. In Canada, most VAI care is provided by family, leading to poor health-related quality of life and increased caregiver burden. No supportive interventions or peer support programs are tailored to VAI caregivers. Owing to the financial, geographic, and time limitations, Web-based support delivery may especially meet VAI family caregiver needs. We have developed a peer mentor training and Web-based peer support program for VAI caregivers including information-sharing, peer-to-peer communication, and peer mentorship. Objective Study Stage 1 aims to (1) evaluate the face and content validity of the peer mentor training program and (2) investigate participant satisfaction. Study Stage 2 aims to evaluate (1) the feasibility of participant recruitment and Web-based program delivery; (2) acceptability, usability, and satisfactoriness; (3) experiences of caregivers and peer mentors with the Web-based peer support program; and (4) effect of the Web-based peer support program on caregiver health outcomes. Methods Study Stage 1: We will train 7 caregivers to act as peer mentors for the Web-based peer support program trial; they will complete questionnaires rating the utility of individual training sessions and the training program overall. Study Stage 2: We will recruit 30 caregiver peers for a pilot randomized controlled trial of the 12-week Web-based peer support program using a waitlist control; the program includes private chat, a public discussion forum, and weekly moderated chats. Caregiver peers will be randomized to the intervention or waitlist control group using a 1:1 ratio using Randomize.net. Both groups will complete pre- and postintervention health outcome questionnaires (ie, caregiving impact, mastery, coping, personal gain, positive affect, and depression). Caregiver peers in the intervention arm will only complete a program evaluation and will be invited to participate in an interview to provide insight into their experience. Peer mentors will be invited to participate in a Web-based focus group to provide insight into their experience as mentors. We will judge the feasibility per the number of recruitment and program delivery goals met, use analysis of covariance to compare health outcomes between intervention and control groups, and analyze qualitative data thematically. Results Peer mentor training was completed with 5 caregivers in July 2018. To date, 2 caregivers have beta-tested the website, and the Web-based peer support program trial will commence in September 2018. Results are expected by early 2019. Conclusions This study will result in the production and initial evaluation of a rigorously developed, evi...