User perspectives of digital manufacturing for lower-limb prosthetic sockets.

BACKGROUND: There is growing interest to use digital technology (DT) for manufacturing lower-limb prosthetic sockets to improve efficiency and clinical outcomes. However, little is known about how lower-limb prosthesis users perceive DTs, such as 3D scanning and 3D printing. OBJECTIVES: This study aimed to provide an understanding of perceptions and experiences with DT for prosthetic socket manufacturing from the perspective of prosthesis users. STUDY DESIGN: A qualitative descriptive research study. METHODS: Nine lower-limb prosthesis users (mean age 56; 5 female; 4 male) participated in one-on-one semistructured telephone interviews. Inductive thematic analysis was performed to identify a codebook and emerging themes from the interview transcripts. RESULTS: Two major themes were identified: (1) expectations and prioritization of 3D printed socket usability and (2) facilitators and barriers to uptake of DT among patients. CONCLUSION: DT methods were found to be acceptable and feasible from a patient perspective, although technological advancements are still required, and real-time communication about the process may be vital for ensuring patient engagement. Consideration of these findings may improve patient satisfaction to emerging prosthesis treatment plans and ultimately support widespread adoption of DT as an additional tool for fabricating prosthetic sockets.

A qualitative study exploring healthcare professionals' perceptions of lower limb 3D printed sockets.

PURPOSE: The purpose of this study was to explore healthcare professionals' (HCPs) perceptions and experiences related to 3D scanning and 3D printing for fabricating lower limb prosthetic sockets. MATERIALS AND METHODS: This study used a qualitative descriptive approach. Participants were recruited through HCPs' professional associations, social media posts, and snowball sampling. Purposive sampling was used to attain variation in provider type. One-on-one telephone interviews were conducted using a semi-structured interview guide. Inductive thematic analysis was performed to identify the main themes. RESULTS: Three themes were identified: (1) 3D scanning of the residual limb for designing prosthetic sockets is perceived as clean, quick, and convenient; (2) concerns about the strength and safety of 3D printed sockets for long-term use; (3) Adoption of 3D scanning and 3D printing technology for fabricating prosthetic sockets. CONCLUSION: We identified perceived benefits and challenges with digital technologies for fabricating prosthetic sockets. To increase adoption, more research demonstrating its efficacy compared to conventional methods, increasing 3D printing material quality, and improving software training programs are needed.Implications for Rehabilitation3D printing and 3D scanning are emerging digital technologies that can be used as alternative methods for prosthetic socket manufacturing in the field of rehabilitation.Our research identified perceived benefits of using digital technologies for fabricating prosthetics sockets (3D scanning is perceived as clean, quick, and convenient) and perceived challenges (concerns about the strength and safety of 3D printed sockets for long-term use and a prolonged learning curve).To increase adoption of these digital technologies, more training should be provided to prosthetists and support provided to integrate new processes into staff workloads.

Barriers and Facilitators to Delivering Inpatient Cardiac Rehabilitation: A Scoping Review.

Objective: The purpose of this scoping review was to summarize the literature on barriers and facilitators that influence the provision and uptake of inpatient cardiac rehabilitation (ICR). Methods: A literature search was conducted using PsycINFO, MEDLINE, EMBASE, CINAHL and AgeLine. Studies were included if they were published in English after the year 2000 and focused on adults who were receiving some form of ICR (eg, exercise counselling and training, education for heart-healthy living). For studies meeting inclusion criteria, descriptive data on authors, year, study design, and intervention type were extracted. Results: The literature search resulted in a total of 44,331 publications, of which 229 studies met inclusion criteria. ICR programs vary drastically and often focus on promoting physical exercises and patient education. Barriers and facilitators were categorized through patient, provider and system level factors. Individual characteristics and provider knowledge and efficacy were categorized as both barriers and facilitators to ICR delivery and uptake. Team functioning, lack of resources, program coordination, and inconsistencies in evaluation acted as key barriers to ICR delivery and uptake. Key facilitators that influence ICR implementation and engagement include accreditation and professional associations and patient and family-centred practices. Conclusion: ICR programs can be highly effective at improving health outcomes for those living with CVDs. Our review identified several patient, provider, and system-level considerations that act as barriers and facilitators to ICR delivery and uptake. Future research should explore how to encourage health promotion knowledge amongst ICR staff and patients.

Patients, Caregivers, and Healthcare Providers' Experiences with COVID Care and Recovery across the Care Continuum: A Qualitative Study.

Introduction: During the COVID-19 pandemic, discharge timelines were accelerated and patients were moved across the continuum of care, from acute to post-acute care, to relieve the strain in health system capacity. This study aimed to investigate the COVID-19 care pathway from the perspective of patients, caregivers, and healthcare providers to understand their experiences with care and recovery within and across care settings. Methods: A qualitative descriptive study. Patients and their families from an inpatient COVID-19 unit and healthcare providers from an acute or rehabilitation COVID-19 unit were interviewed. Results: A total of 27 participants were interviewed. Three major themes were identified: 1) The perceived quality and pace of COVID-19 care improved from acute care to inpatient rehabilitation; 2) Care transitions were especially distressing; and 3) Recovery from COVID-19 stagnated in the community. Conclusion: Inpatient rehabilitation was viewed as higher quality due to the slower paced care. Care transitions were distressing for stakeholders and enhanced integration between acute and rehabilitation care were suggested to improve patient handover. A lack of rehabilitation access led to recovery stagnating for patients discharged to the community. Telerehab may improve the transition to home and ensure access to adequate rehabilitation and support in the community.

Characteristics and healthcare utilization of COVID-19 rehabilitation patients during the first and second waves of the pandemic in Toronto, Canada.

The objective of this study is to describe the healthcare utilization, and clinical and sociodemographic features of a cohort of 74 coronavirus disease 2019 (COVID-19) patients admitted to a tertiary rehabilitation hospital in Toronto, Canada. A retrospective chart review was performed using 74 charts from patients admitted to a COVID-19 rehabilitation unit between 11 April 2020 and 30 April 2021. Measures of central tendency, SDs, interquartile ranges, frequencies, and proportions were calculated to analyze clinical and sociodemographic data. A total of 74 patients were included in this study, including 33 males and 41 females. The mean age was 72.8 years, with Wave 1 patients being younger than Wave 2 patients. Sixty-six percent of total patients experienced hypertension. Mean functional independence measure score across both waves was 78 at admission and 100 at discharge. Mean length of stay was 14.6 days in Wave 1 and 18.8 days in Wave 2. This study represents some of the first data on the characteristics and outcomes of COVID-19 patients admitted to inpatient rehabilitation in Toronto, Canada across the initial waves of the COVID-19 pandemic.

Psychosocial group therapy interventions for patients with physical disabilities: A scoping review of implementation considerations.

OBJECTIVE: Group therapy is an intervention that that has been well-studied in patients with medical illness and shown to optimize patients' wellbeing and mental health resource utilization. However, its implementation and effectiveness have not been adequately studied in those with physical disabilities. This review addresses current gaps by synthesizing the literature to examine implementation considerations in the use of psychosocial group therapy for anxiety and depression in individuals with physical disabilities. METHOD: This review adhered to Arksey and O'Malley's methodological framework and the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews Checklist. Studies were identified through MEDLINE, EMBASE, PSYCINFO, and CINAHL. Included studies were qualitative, quantitative, or mixed methods research on participants with a physical disability, and undergoing psychosocial group therapy to address anxiety/depression. RESULTS: Fifty-five studies were included in the review. The most common physical disabilities were multiple sclerosis (n = 31) and Parkinson's disease (n = 13). Group Cognitive Behavioral Therapy was the most commonly used intervention, facilitated by individuals with formal mental health training. A majority of therapy sessions included cohorts of up to 10 patients, and occurred weekly. Almost half of the studies (n = 27) reported high adherence rates (80%-99%), and a large proportion found group therapy led to improvements in their samples on a range of outcomes. CONCLUSION: Group therapies to address anxiety and depression are diverse, widely used, effective, and well-adhered to. This review may help practitioners develop, implement, and evaluate group programming for individuals with physical disabilities to address anxiety and depression. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Conceptualization, use, and outcomes associated with compassion in the care of people with multiple sclerosis: a scoping review.

OBJECTIVE: Compassion is widely regarded as an important component of high-quality healthcare. However, its conceptualization, use, and associated outcomes in the care of people with multiple sclerosis (PwMS) have not been synthesized. The aim of this review is to scope the peer reviewed academic literature on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. METHODS: Studies were eligible for inclusion if reporting primary research data from quantitative, qualitative, or mixed-methods studies on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Relevant studies were identified through searching five electronic databases (CINAHL, Cochrane Library, EMBASE, MEDLINE, and PsycINFO) in January 2022. We followed the guidance outlined in the Joanna Briggs Institute (JBI) manual for evidence synthesis, and also referred to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews Checklist (PRISMA-ScR). Simple descriptive methods were used to chart quantitative findings, and a descriptive approach with basic content analysis was employed to describe qualitative findings. RESULTS: Fifteen studies were included (participant n = 1722): eight quantitative, six mixed-methods, one exclusively qualitative. Synthesized qualitative data revealed that PwMS conceptualize compassion as involving self-kindness, agency, and acceptance. PwMS report using self-compassion in response to unpleasant sensations and experiences. Quantitative findings suggest that compassion may mediate benefit finding, reduced distress, and improved quality of life (QoL) in PwMS, that those with the condition may become more compassionate through time, and that self-compassion specifically can be increased through training in mindfulness. In this context, greater self-compassion in PwMS correlates with less depression and fatigue, better resilience and QoL. Among studies, self-compassion was the most common outcome measure for PwMS. CONCLUSIONS: A nascent literature exists on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Further research is required to better understand what compassion means to PwMS and those caring for them. However, self-compassion can be cultivated among PwMS and may be helpful for managing unpleasant somatic symptoms and in benefit finding. Impact on other health outcomes is less clear. The use of compassion by health care providers in the care of PwMS is unstudied.

The experiences of patients, family caregivers, healthcare providers, and health service leaders with compassionate care following hospitalization with COVID-19: a qualitative study.

PURPOSE: This study explored the experiences of patients, caregivers, healthcare providers, and health service leaders of compassion in the care of people hospitalized with COVID-19. MATERIALS AND METHODS: This study is a secondary analysis of qualitative data deriving from primary research data on recommendations for healthcare organizations providing care to people hospitalized with COVID-19. Participants comprised patients with COVID-19 (n = 10), family caregivers (n = 5) and HCPs in COVID-19 units (n = 12). Primary research data were analyzed deductively under the "lens" of compassion, as defined by Goetz. RESULTS: Four interacting themes were found: (1) COVID-19 - to care or not to care? The importance of feeling safe, (2) A lonely illness - suffering in isolation with COVID-19, (3) Compassionate care for people with COVID-19 across the hospital continuum, and (4) Sustaining compassionate care for people hospitalized with COVID-19 - healthcare provider compassion fatigue and burnout. CONCLUSIONS: Compassionate care is not a given for people hospitalized with COVID-19. Healthcare providers must feel safe to provide care before responding compassionately. People hospitalized with COVID-19 experience additional suffering through isolation. Compassionate care for people hospitalized with COVID-19 is more readily identifiable in the rehabilitation setting. However, compassion fatigue and burnout in this context threaten healthcare sustainability.IMPLICATIONS FOR REHABILITATIONHealthcare providers need to feel physically and psychologically safe to provide compassionate care for people hospitalized with COVID-19.People hospitalized with COVID-19 infection experience added suffering through the socially isolating effects of physical distancing.Compassion and virtuous behaviours displayed by healthcare providers are expected and valued by patients and caregivers, including during the COVID-19 pandemic.High levels of compassion fatigue and burnout threaten the sustainability of hospital-based care for people with COVID-19.

Peer support for traumatic injury survivors: a scoping review.

PURPOSE: Peers are uniquely able to draw on their lived experiences to support trauma survivors' recovery. By understanding the functions and outcomes of peer support and the factors that impact implementation, evidence can be mobilized to enhance its application and uptake into standard practice. As such, we aimed to review the literature on peer support for trauma survivors to: examine the role of peer support in recovery; describe the nature and extent of peer support; Examine the influence of peer support on health and well-being; and identify the barriers and facilitators to developing and implementing peer support. METHODS: Scoping review methodology as outlined by Arksey and O'Malley. RESULTS: Ninety-three articles were reviewed. Peer support was highlighted as an important component of care for trauma survivors and provided hope and guidance for the future post-injury. Most peer support programs were offered in the community and provided one-on-one support from peer mentors using various modalities. Interventions were successful when they involved knowledgeable peer mentors and maintained participant engagement. Prior negative experiences and stigma/privacy concerns deterred trauma survivors from participating. CONCLUSIONS: Peer support fulfills several functions throughout trauma survivors' recovery that may not otherwise be met within existing health care systems. Implications for rehabilitationBy understanding the functions and outcomes and the factors that impact implementation of peer support, evidence can be mobilized to enhance its application and uptake into standard practice.Peers provide trauma survivors with socioemotional support as well as assistance in daily management and life navigation post-injury.Peer support provided hope and guidance for the future after injury and improved self-efficacy amongst trauma survivors.Peer support programs are most likely to be successful when they involve knowledgeable peer mentors, are flexibly delivered, align with organizations' values and priorities, and have adequate resources and funding to support their implementation.

Social disconnectedness and perceived social isolation in persons with spinal cord injury/dysfunction living in the community: A scoping review.

Context: Persons with spinal cord injury/dysfunction (SCI/D) are particularly at risk for social disconnectedness and/or perceived social isolation, which are key components to overall well-being. However, there is limited evidence that aims to understand these phenomena in this population.Objective: To investigate what is known about social disconnectedness and perceived social isolation for adults with SCI/D living in the community.Methods: A scoping review was conducted. A computer assisted search of four online databases was completed on all articles published until May 18th, 2021. Gray literature and key agencies were also searched for relevant documents. Two key concepts (spinal cord injury/dysfunction and social disconnectedness/perceived social isolation) and associated terms were used. All articles were double screened for inclusion by two reviewers.Results: Following deduplication, title and abstract screening and full-text screening, 37 articles met the criteria for inclusion in this review. Most of the included articles were published in North America, used quantitative methods and a cross-sectional design. Articles identified several factors that influenced social disconnectedness and perceived social isolation including participant characteristics, social support, psychological well-being, participation in activities, the built environment and physical health.Conclusion: The current literature suggests that issues with social disconnectedness and perceived social isolation exist for persons living with SCI/D in the community. More work is needed to better understand the relationship between these constructs. A more nuanced understanding can inform targeted interventions to help mitigate the impact of these phenomena on the SCI/D population.

The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study.

Introduction: Family caregivers play an important role supporting the day-to-day needs of ventilator-assisted individuals (VAIs) living at home. Peer-to-peer communication can help support these caregivers and help them sustain caregiving in the community. Online peer-support has been suggested as a way to help meet caregivers' support needs. Methods: A qualitative descriptive approach was used to elicit the perspectives of support received from caregivers who participated in a pilot web-based peer support program from October to December 2018. Data were collected through the transcripts of weekly online peer-to-peer group chats. Data were analyzed using an integration of thematic and framework analysis. Results: In total, eight caregivers and five peer mentors participated in the pilot. All five mentors and four of the caregivers participated in the weekly chats. We identified three themes, a) The experience of caregivers is characterized by unique challenges related to the complexity of VAI care including technology; b) Mentors and caregiver participants reciprocally share support; c) Despite hardships, there are things that make caregiving easier and joyful. Discussion: Our results add to the growing body of evidence pointing to the importance of online communities for supporting vulnerable caregivers. The reciprocal element of peer support, where trained mentors and untrained participants both benefit from support, can help sustain peer-support interventions. Despite the challenges of providing care to a VAI, there are facilitators that may help ease the caregiving experience and caregivers can benefit from ongoing support that is tailored to their needs along the caregiving trajectory.

Implementation considerations for delivering inpatient COVID rehabilitation: A qualitative study.

RATIONALE: Patients recovering from significant COVID-19 infections benefit from rehabilitation; however, aspects of rehabilitative care can be difficult to implement amidst COVID infection control measures. AIMS AND OBJECTIVES: We used the Consolidated Framework for Implementation Research (CFIR) to evaluate the rapid implementation of a COVID zone in an in-patient rehabilitation hospital at the onset of the first wave of the pandemic. METHODS: Semistructured interviews were conducted with health care providers (n = 12) supporting the COVID zone, as well as with patients (n = 10) who were discharged from the COVID zone and their family caregivers (n = 5). The interviews explored the successes and challenges of working on the unit and the quality of care that was delivered to patients recovering from COVID. RESULTS: Rapid implementation of the COVID zone was supported by champions at the middle-management level but challenged by a number of factors, including: conflicting expert opinions on best infection control practices (outer setting), limited flow of information from senior leaders to frontline staff (inner setting), lack of rehabilitation equipment and understanding of how to provide high quality rehabilitative care in this context (intervention characteristics), willingness and self-efficacy of staff working in the COVID zone (individual characteristics) and lack of time to reflect on and assess effectiveness (process). CONCLUSIONS: While there was an apparent need for rapid implementation of a COVID rehabilitation zone, senior leadership, middle management and frontline staff faced several challenges. Future evaluations should focus on how to adapt COVID rehabilitation services during fluctuating pandemic restrictions, and to account for rehabilitative needs of people recovering from significant COVID infections.

Infection prevention and control across the continuum of COVID-19 care: A qualitative study of patients', caregivers' and providers' experiences.

INTRODUCTION: Healthcare facilities adopted restrictive visitor policies as a result of the COVID-19 (COVID) pandemic. Though these measures were necessary to promote the safety of patients, families and healthcare providers, it led to isolation and loneliness amongst acute care inpatients that can undermine patient rehabilitation and recovery. The study objectives were to (1) explore how infection prevention and control (IP&C) measures impacted stakeholders' perceptions of care quality and interactions with others and (2) investigate how these experiences and perceptions varied across stakeholder groups and care settings. METHODS: A qualitative descriptive study was conducted. Patients and their families from an inpatient COVID rehabilitation hospital and healthcare providers from an acute or rehabilitation COVID hospital were interviewed between August 2020 and February 2021. RESULTS: A total of 10 patients, 5 family members and 12 healthcare providers were interviewed. Four major themes were identified: (1) IP&C measures challenged the psychosocial health of all stakeholders across care settings; (2): IP&C measures precipitated a need for greater relational care from HCPs; (3) infection prevention tenets perpetuated COVID-related stigma that stakeholders experienced across care settings; and (4) technology was used to facilitate human connection when IP&C limited physical presence. CONCLUSION: IP&C measures challenged psychosocial health and maintenance of vital human connections. Loneliness and isolation were felt by all stakeholders due to physical distancing and COVID-related stigma. Some isolation was mitigated by the relational care provided by HCPs and technological innovations used. The findings of the study underscore the need to balance safety with psychosocial well-being across care settings and beyond the patient-provider dyad. PATIENT AND PUBLIC CONTRIBUTION: This study was informed by the Patient-Oriented Research Agenda and developed through consultations with patients and family caregivers to identify priority areas for rehabilitation research. Priority areas identified that informed the current study were (1) the need to focus on the psychosocial aspects of recovery from illness and injury and (2) the importance of exploring patients' recovery experiences and needs across the continuum of care. The study protocol, ethics submission, analysis and manuscript preparation were all informed by healthcare providers with lived experience of working in COVID care settings.

Conceptualization, use, and outcomes associated with empathy and compassion in physical medicine and rehabilitation: a scoping review.

The purpose of this review is to scope the literature on the conceptualization, use, and outcomes associated with empathy and compassion in physical medicine and rehabilitation. Eligible studies included quantitative, qualitative, or mixed-methods research that presented primary data on the conceptualization, use, and outcomes associated with empathy and compassion in physical medicine and rehabilitation. Relevant studies were identified through CINAHL, Cochrane Library, EMBASE, MEDLINE, and PEDRO. Twenty-four studies were included (participant n = 3715): 13 quantitative, six mixed-methods, and five qualitative. In qualitative analysis, empathy and compassion were conceptualized as both intrinsic and exhibitory. Where self-compassion was examined as an intervention for patients, improvements in anxiety, depression, and quality of life were reported. Survey data suggested that when rehabilitation health care providers were perceived to be more empathic, patients reported greater treatment satisfaction, acceptance, adherence, and goal attainment. Individuals receiving and health care providers who deliver rehabilitative care conceptualize empathy and compassion as valuable in physical medicine and rehabilitation settings, with cognitive and behavioural elements described. Health care provider empathy and compassion-based interventions may influence outcomes positively in this context. More research is needed to understand the mechanisms of action of empathy and compassion and effectiveness in physical medicine and rehabilitation settings.

Providing rehabilitation to patients recovering from COVID-19: A scoping review.

OBJECTIVE: To synthesize the nature and extent of research on rehabilitation care provision to patients with COVID-19. 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, 2020 using key words such as "rehabilitation," "physical medicine," "allied health professionals," and variations of "COVID." The search was updated on October 13, 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 (ie, primary data, secondary data, guidelines). Key information extracted included (1) COVID sequelae; (2) rehabilitation adaptations; (3) structure, function, and content of rehabilitation services/programs; (4) facilitators and/or barriers to providing COVID rehabilitation; and (5) recommendations for COVID rehabilitation programming. Data were synthesized narratively. SYNTHESIS: In total, 128 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.

Mindfulness-based interventions for people with multiple sclerosis: a systematic review and meta-aggregation of qualitative research studies.

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.IMPLICATIONS FOR REHABILITATIONBoth face-to-face and online Mindfulness-based interventions (MBIs) appear acceptable to PwMS and, ideally, people should be offered a choice in training modality.PwMS derive benefit from undertaking MBIs with their peers, where a sense of camaraderie and belonging develop through shared (mindful) experiences.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.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.

Daughters' experiences of shared caregiving to a parent with dementia.

BACKGROUND: Siblings often share in the care of parents with dementia, but little is known about how care is shared. Research suggests that in comparison with their brothers, sisters provide the majority of care to a parent with dementia and this can contribute to the sisters experiencing poorer health outcomes. There is limited knowledge about how to guide siblings who share in the care of a parent with dementia. AIM: Our qualitative descriptive study sought to explore the experiences of adult daughters sharing care responsibilities with their siblings. The study protocol was approved by institutional (University of Toronto and Baycrest Health Sciences) research ethics boards. MATERIALS & METHODS: Thirty-four daughters participated in an online qualitative survey. Data were analysed using Braun and Clarke's (Qualitative Research in Psychology, 3, 2006, 77) 6-step process. RESULTS: In an overarching theme, daughters expected shared caregiving with their siblings. They conceptualised this to be a practice of being equitable in dividing care responsibilities and fulfilling a supportive role for a parent with dementia; however, this expectation was not met by most daughters. Two subthemes were identified: (a) factors facilitating/constraining shared caregiving and (b) consequences of sharing care. The findings highlight the importance of understanding shared caregiving among siblings when caring for a parent with dementia. DISCUSSION: Results from this study suggest that although shared caregiving is often the goal, factors such as gender roles, geographical proximity, caregiver expertise/skill set and work schedules affect caregivers' abilities to share caregiving. These factors affected whether daughters viewed the caregiving situation as being shared equitably or inequitably, and this led to feelings of acceptance or resentment of their sibling's contribution to the care of their parent. CONCLUSIONS: Healthcare providers can utilise these findings to better support adult-child caregivers negotiating care with their siblings.

Healthcare utilization and costs of pediatric home mechanical ventilation in Canada.

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.

Development of a Web-Based Peer Support Program for Family Caregivers of Ventilator-Assisted Individuals Living in the Community: Protocol for a Pilot Randomized Controlled Trial.

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, evidence- and stakeholder-informed Web-based peer training and peer support program for caregivers of VAIs residing at home. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/11827.

Using Twitter to recruit participants for health research: An example from a caregiving study.

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.