Current evidence has suggested the need for increased self-management support efforts in spinal cord injury (SCI) to reduce secondary complications. However, current self-management programs may not ...be suitable for the unique needs of individuals with SCI, including reduced mobility and the importance of attendant care. There is a need for greater understanding of the self-management strategies adopted by individuals with SCI and the potential need for a tailored self-management program. Thus, the purpose of the current study was to understand the perceived facilitators and barriers to self-management to prevent secondary complications.
A descriptive qualitative approach was used and involved telephone interviews. Semi-structured interviews were conducted with individuals with traumatic SCI, their family members/caregivers, and managers from acute care/trauma and rehabilitation centres. Participants were recruited between September 2011 and May 2012. Analysis was conducted using inductive thematic analysis to understand the perceived facilitators and barriers to self-management to prevent secondary complications.
A total of 26 interviews were conducted and they included 7 individuals with traumatic SCI, 7 family/caregivers (i.e., 7 SCI-caregiver dyads), and 12 acute care/rehabilitation managers from across the province of Ontario. The following five facilitators to self-management were identified: physical support from the caregiver, emotional support from the caregiver, peer support and feedback, importance of positive outlook and acceptance, and maintaining independence/control over care. The following five barriers to self-management were identified: caregiver burnout, funding and funding policies, lack of accessibility, physical limitations and secondary complications, and difficulties achieving positive outlook or mood.
This study demonstrated that the caregiver and the individual's own mood/outlook, among other facilitators and barriers, make significant contributions to the self-management of individuals with traumatic SCI. The issues of timing/readiness and comorbidities and aging were observed across many of these themes. As such, the development of a tailored self-management program for individuals with traumatic SCI and their caregivers should incorporate these considerations.
To increase access to safe and appropriate exercise for people with balance and mobility limitations, community organizations have partnered with healthcare providers to deliver an evidence-based, ...task-oriented group exercise program in community centers in Canada. We aimed to understand challenges and solutions to implementing this program model to inform plans for expansion.
At a 1-day meeting, 53 stakeholders (healthcare/recreation personnel, program participants/caregivers, researchers) identified challenges to program implementation that were captured by seven themes: Resources to deliver the exercise class (e.g., difficulty finding instructors with the skills to work with people with mobility limitations); Program marketing (e.g., to foster healthcare referrals); Transportation (e.g., particularly from rural areas); Program access (e.g., program full); Maintaining program integrity; Sustaining partnerships (i.e., with healthcare partners); and Funding (e.g., to deliver program or register). Stakeholders prioritized solutions to form an action plan. A survey of individuals supervising 28 programs revealed that people with stroke, acquired brain injury, multiple sclerosis, and Parkinson's disease register at 95-100% of centers. The most prevalent issues with program fidelity across centers were not requiring a minimum level of walking ability (32%), class sizes exceeding 12 (21%), and instructor-to-participant ratios exceeding 1:4 (19%). Findings provide considerations for program expansion.
In 2013, Health Quality Ontario introduced stroke quality-based procedures (QBPs) to promote use of evidence-based practices for patients with stroke in Ontario hospitals. The study purpose was to: ...(a) describe the knowledge translation (KT) interventions used to support stroke QBP implementation, (b) assess differences in the planned and reported KT interventions by region, and (c) explore determinants perceived to have affected outcomes.
A mixed methods approach was used to evaluate: activities, KT interventions, and determinants of stroke QBP implementation. In Phase 1, a document review of regional stroke network work plans was conducted to capture the types of KT activities planned at a regional level; these were mapped to the knowledge to action framework. In Phase 2, we surveyed Ontario hospital staff to identify the KT interventions used to support QBP implementation at an organizational level. Phase 3 involved qualitative interviews with staff to elucidate deeper understanding of survey findings.
Of the 446 activities identified in the document review, the most common were 'dissemination' (24.2%; n = 108), 'implementation' (22.6%; n = 101), 'implementation planning' (15.0%; n = 67), and 'knowledge tools' (10.5%; n = 47). Based on survey data (n = 489), commonly reported KT interventions included: staff educational meetings (43.1%; n = 154), champions (41.5%; n = 148), and staff educational materials (40.6%; n = 145). Survey participants perceived stroke QBP implementation to be successful (median = 5/7; interquartile range = 4-6; range = 1-7; n = 335). Forty-four people (e.g., managers, senior leaders, regional stroke network representatives, and frontline staff) participated in interviews/focus groups. Perceived facilitators to QBP implementation included networks and collaborations with external organizations, leadership engagement, and hospital prioritization of stroke QBP. Perceived barriers included lack of funding, size of the hospital (i.e., too small), lack of resources (i.e., staff and time), and simultaneous implementation of other QBPs.
Information on the types of activities and KT interventions used to support stroke QBP implementation and the key determinants influencing uptake of stroke QBPs can be used to inform future activities including the development and evaluation of interventions to address barriers and leverage facilitators.
The trend of decreasing length of stay in rehabilitation facilities has led to individuals with spinal cord injury (SCI) entering the community with unmet needs and fewer self-care skills to prevent ...secondary complications. The implementation of a self-management program for individuals with SCI for the management of these complex needs, including secondary complications, may be one option to fill these care gaps. A greater understanding of the meaning of self-management may facilitate the development of a tailored self-management program in this population. Thus, the current research aims to understand the meaning of self-management in traumatic SCI from the perspectives of individuals with traumatic SCI and their caregivers as well as acute care/trauma and rehabilitation managers.
A descriptive qualitative approach was used. Semi-structured telephone interviews were conducted with 26 individuals with traumatic SCI, their family members/caregivers, and managers from acute care/trauma and rehabilitation centres. Inductive thematic analysis was applied.
The meaning of self-management in SCI related to two overarching themes of internal and external responsibility attribution and revealed differences between the meaning of self-management in SCI among individuals with traumatic SCI and their caregivers versus managers. Overall, the meaning of self-management among the SCI and caregiver participants related principally to internal responsibility attribution. For the manager participants, the meaning of self-management was much narrower and the overarching theme of internal responsibility attribution that was observed among the SCI-caregiver dyads was not as widely expressed by this group.
Interventions that are co-created by users and health care professionals are associated with positive physical and mental health outcomes. Thus, the understanding of self-management from these varying perspectives could be applied to the development of a tailored self-management program that is relevant to individuals with traumatic SCI and their caregivers. This may involve the development of a program that uses some of the structure of traditional chronic disease self-management programs, in accordance with the beliefs held by the managers, but also incorporates elements of wellness/health promotion interventions, in accordance with the beliefs held by the SCI and caregiver participants.
The number of young adults (youth) living with childhood-onset disabilities, and requiring transitional support to adult community and rehabilitation services, is increasing. We explored facilitators ...and barriers to accessing and sustaining community and rehabilitation services during the transition from pediatric to adult care.
A qualitative descriptive study was conducted in Ontario, Canada. Data were collected through interviews with youth (
= 11) and family caregivers (
= 7). The data were coded and analyzed using thematic analysis.
Youth and caregivers face many types of transitions from pediatric to adult community and rehabilitation services, e.g., those related to education, living arrangements, and employment. This transition is marked by feelings of isolation. Supportive social networks, continuity of care (i.e., same care providers), and advocacy all contribute to positive experiences. Lack of knowledge about resources, changing parental involvement without preparation, and a lack of system responses to evolving needs were barriers to positive transitions. Financial circumstances were described as either a barrier or facilitator to service access.
This study demonstrated that continuity of care, support from providers, and social networks all contribute markedly to the positive experience of transitioning from pediatric to adult services for individuals with childhood-onset disabilities and family caregivers. Future transitional interventions should incorporate these considerations.
Introduction To examine the scope of existing literature on the conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities. Methods A ...protocol was developed based on the Joanna Briggs Institute (JBI) scoping review method. MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and EBSCOhost CINAHL, were searched. Results Eight studies were selected for inclusion; four used quantitative methodology, and four used qualitative methods. Compassion was not defined a priori or a posteriori in any of the included studies. The concept of self-compassion was explicitly defined only for parents of youth with childhood-onset disabilities in three studies a priori . The most reported outcome measure was self-compassion in parents of youth with childhood-onset disabilities. Self-compassion among parents was associated with greater quality of life and resiliency and lower stress, depression, shame and guilt. Discussion There is limited evidence on the conceptualization, use, and outcomes associated with compassion among youth with childhood-onset disabilities. Self-compassion may be an effective internal coping process among parents of youth with childhood-onset disabilities. Further research is required to understand the meaning of compassion to youth with childhood-onset disabilities, their parents and caregivers. Systematic review registration https://doi.org/10.17605/OSF.IO/2GRB4 .
People with childhood-onset disabilities face unique physical and social challenges in adulthood. Exercise interventions may improve physical performance in children, but there is a lack of research ...on adults.
To describe studies that investigate exercise interventions and to evaluate the quality of physical performance outcome measures for adults with childhood-onset disabilities.
Eligible studies reported on exercise interventions for adults (ages 16+) with cerebral palsy, spina bifida, or acquired brain injuries. Only randomized controlled trials published in English from 2008 to 2019 were included. MEDLINE, CINAHL, PEDro, EMBASE, and Cochrane Central Register of Controlled Trials were searched. Two reviewers independently screened studies and abstracted data.
This scoping review included 4 trials reporting on cerebral palsy only. Three strength training programs found significant improvements in gait, and one mixed training program found significant improvements in strength and fitness. Only two outcome measures used are valid/reliable for adults (6 Minute Walk Test and Borg-20 Grades).
Certain interventions may improve physical performance, but there is a lack of research on appropriate exercise interventions and physical performance outcome measures for adults with childhood-onset disabilities. Different exercise interventions should be investigated using larger sample sizes and outcome measures should be standardized.
Background: Adverse childhood experiences are significant risk factors for physical and mental illnesses in adulthood. Traumatic brain injury/concussion is a challenging condition where pre-injury ...factors may affect recovery. The association between childhood adversity and traumatic brain injury/concussion has not been previously reviewed. The research question addressed is: What is known from the existing literature about the association between adverse childhood experiences and traumatic brain injury/concussion in adults?
Methods: All original studies of any type published in English since 2007 on adverse childhood experiences and traumatic brain injury/concussion outcomes were included. The literature search was conducted in multiple electronic databases. Arksey and O'Malley and Levac et al.'s scoping review frameworks were used. Two reviewers independently completed screening and data abstraction.
Results: The review yielded six observational studies. Included studies were limited to incarcerated or homeless samples, and individuals at high-risk of or with mental illnesses. Across studies, methods for childhood adversity and traumatic brain injury/concussion assessment were heterogeneous.
Discussion: A positive association between adverse childhood experiences and traumatic brain injury occurrence was identified. The review highlights the importance of screening and treatment of adverse childhood experiences. Future research should extend to the general population and implications on injury recovery.
Implications for rehabilitation
Exposure to adverse childhood experiences is associated with increased risk of traumatic brain injury.
Specific types of adverse childhood experiences associated with risk of traumatic brain injury include childhood physical abuse, psychological abuse, household member incarceration, and household member drug abuse.
Clinicians and researchers should inquire about adverse childhood experiences in all people with traumatic brain injury as pre-injury health conditions can affect recovery.
Purpose: We aimed to synthesize the literature that considered frailty in the evaluation of rehabilitation interventions for adults (aged ≥18) by answering: (1) how is frailty defined in ...rehabilitation intervention research?; (2) how is frailty operationalized in rehabilitation intervention research?; (3) what are the characteristics of rehabilitation interventions for frail adults and what frailty related outcomes are assessed?
Materials and methods: A scoping review was conducted. Data were analyzed using descriptive statistics and qualitative content analysis.
Results: 53 articles met the inclusion criteria. Most studies were conducted in Europe and involved randomized control trials. The included studies reported on rehabilitation interventions that only included individuals aged 50 or older. Thirteen studies used Fried's definition of frailty, but most (n = 27) did not use any definition. Many studies did not differentiate between the conceptualization (e.g., definition) and operationalization (e.g., use of inclusion/exclusion criteria, outcome measures) of frailty. Most interventions focused on exercise. Instrumental activities of daily living reported most frequently as outcomes (n = 11).
Conclusions: There is an absence of consistent definitions of frailty in rehabilitation interventions and current definitions tend to focus on physical functioning. The authors suggest rehabilitation researchers consider an expanded definition of frailty informed by the International Classification of Functioning, Disability and Health framework.
IMPLICATIONS FOR REHABILITATION
Rehabilitation professionals should use an expanded definition of frailty, informed by the International Classification of Functioning, Disability and Health framework, should include physical, mental, personal, environmental, and social factors to decrease, delay, or prevent frailty in adults.
Rehabilitation professionals should consider a broader operationalization of frailty that is not dependent on age and physical functioning.
Rehabilitation professionals that consider a broader conceptualization of frailty should tailor interventions to the specific needs of frail adults.
Purpose: The purpose of this systematic review was to synthesize and appraise the evidence regarding the impact of quality improvement strategies on quality of life as well as physical and ...psychological well-being of individuals with stroke.
Materials and methods: Studies were identified by searching MEDLINE (OVID interface, 2000 onwards), CINAHL (EBSCO interface, 2000 onwards), EMBASE (OVID interface, 2000 to present), and PsycINFO (OVID interface, 2000 onwards). The Effective Practice and Organization of Care Risk of Bias Tool was applied. Extracted data from the publications included: study characteristics, participant characteristics, the strategy characteristics, the outcomes, and quality appraisal.
Results: Our review identified 12 trials that utilized only 4 of the 10 quality improvement strategies included in this review. The most common quality improvement strategy was self-management. Other studies included patient education, team changes, and case management. Only 5 of the 12 studies reported statistically significant improvements in some component of quality of life.
Conclusions: There is a lack of evidence to demonstrate efficacy/effectiveness of patient education, self-management, team changes, and case management approaches on improving the quality of life of stroke survivors. Identifying the essential features of effective and ineffective strategies, especially in the area of self-management strategies would be beneficial.
Implications for rehabilitation
There is a lack of evidence to demonstrate efficacy/effectiveness of patient education, self-management, team changes, and case management approaches on improving the quality of life of stroke survivors.
To improve these outcomes, there may be a need to co-create/tailor quality improvement interventions with patients, their caregivers, and providers.
The impact of a broader range of quality improvement interventions, including clinician education and patient reminder systems, on quality of life post-stroke should be considered.
PDF
