Indicators of life success from the perspective of individuals with traumatic brain injury: a scoping review.

PURPOSE: The purpose was to synthesize qualitative literature and identify indicators of life success (positive life outcomes and experiences) that can help in understanding resiliency in the context of traumatic brain injury (TBI). METHODS: This scoping review involved searching nine online databases for population (TBI) and context (qualitative literature). Searches retrieved 42 852 articles and, after two-stage screening, 76 articles met the inclusion criteria of reporting indicators of life success from the perspective of individuals with TBI. RESULTS: Most studies were conducted in North America, Australia, or Europe. Participants were people living with TBI (mild to severe), of all age ranges. Positive life experiences were organized within four domains: understanding of oneself and one's life, social relationships and interaction, doing (engagement in activities, sense of control and accomplishment), and hope for the future. CONCLUSIONS: The positive life experiences reflect both processes and outcomes (indicators of success) and highlight the need for a multidimensional approach when seeking to understand resiliency following TBI. The transactional framework of life experiences can be applied in future TBI resiliency research to understand how individuals negotiate adversity through experiences promoting understanding of oneself and the world, social relationships, engagement in activity and hope. Implications for rehabilitationRehabilitation services should consider how to afford opportunities for engagement in activity, social interaction, meaning making (i.e., coming to new understandings), and hope.With respect to engaging in activity and social relationships, having social interaction, being understood, being active and productive, having autonomy, and having accomplishments, reflect important experiences to enable within rehabilitation services.Rehabilitation professionals should consider how providing opportunities for their clients to have positive life experiences may contribute toward an adaptive and empowered mindset.

Exploring the after-hours social experiences of youth with disabilities in residential immersive life skills programs: a photo elicitation study.

PURPOSE: This study explored the meaning of the after-hours social experiences of youth with disabilities in a residential life skills program. After-hours experiences occur outside of formal program hours, primarily in the evenings. METHOD: Five youth with cerebral palsy (three females) participated in an exploratory photo elicitation study while attending one of two residential immersive life skills programs. Following an auto-driven photo elicitation method, youth took photos of their choosing and then were interviewed about photos they elected to share. Interview data were analyzed thematically. RESULTS: Themes illustrated meaningful social experiences and their benefits. Two themes described the after-hours social experiences of most importance to youth: learning about strengths from working together, and having meaningful individual and group conversations. Three themes reflected benefits reported by youth: learning about differences among people, gaining new perspectives and new knowledge about oneself, and developing friendships and a sense of "family." CONCLUSIONS: The findings illuminate the benefits of after-hours social experiences for youth who may have had little opportunity previously to informally interact with other youth with disabilities. The findings highlight the importance of the immersive, group nature of a residential, away-from-home youth transition program, particularly the value added by the after-hours program component.IMPLICATIONS FOR REHABILITATIONThe findings support the value of an over-night residential aspect for life skills programs for youth with disabilities.Residential immersive life skills programs provide opportunities for youth to discuss common experiences and shared challenges, leading to the formation of social bonds.Residential immersive life skills programs provide opportunities for youth to interact with peers in the absence of adults, and to make choices about how to use their personal time.It is important to intentionally design transition programs to provide opportunities for after-hours social experiences, including working together and socializing.

Investigating the adaptation of caregivers of people with traumatic brain injury: a journey told in evolving research traditions.

PURPOSE: To examine how conceptualizations of caregiver adaptation to traumatic brain injury have changed over time. The objectives were to identify research traditions, adaptive outcomes assessed in these traditions, and psychosocial variables associated with adaptive outcomes. METHODS: A meta-narrative review was conducted on 29 identified articles published over a 25-year period (1990-2015). RESULTS: Four traditions were identified with varying storylines. Burden/Strain (1990-1999) focused on adjustment as the absence of a negative state. Appraisal/Coping (2000-2005) recognized that caregiving experiences could be both positive and negative. In Quality of Life (2006-2011), there was increasing recognition that both personal and contextual factors influence adaptation. Resiliency (2012-2015) used the term "resiliency" as an organizing framework for a broad group of variables and assessed resilience, quality of life, community re-integration, and life/marital satisfaction. CONCLUSIONS: These storylines reflect an evolution from problem-based to strengths-based conceptualizations, from interest in crisis to considering adaptation as a process unfolding over time, from quantitative to qualitative methods, and towards more holistic views of adaptive outcomes. Variables significantly associated with outcomes across the traditions included social support, reframing and positive appraisal, and behavior strategies. Implications concern the need for longitudinal studies, measurement of environmental factors, and the development of best practices.IMPLICATIONS FOR REHABILITATIONResearch studies on the adaptation of caregivers for people with TBI have evolved from a focus on burden, to coping and quality of life, and most recently to resiliency.It is important to assist caregivers of people with TBI to obtain social support, find positive ways of viewing their experiences, and take part in respite and enjoyed activities.Service providers can help caregivers by adopting a strengths-based perspective to help them recognize available resources, supports, and opportunities.Since caregiver adaptation changes over time, service providers should pay attention to changes in family circumstances and the mental health of caregivers.

A Solution-Focused Coaching Intervention with Children and Youth with Cerebral Palsy to Achieve Participation-Oriented Goals.

Background: The ultimate goal of therapeutic intervention is meaningful participation in one's world. For people with Cerebral Palsy (CP), limitations can often become a focus of care.Aim: Our purpose was to investigate the impact of a Solution-Focused Coaching intervention designed for pediatric rehabilitation (SFC-peds) on the attainment of participation goals for children/youth with CP.Method: Twelve participants participated in a repeated measures quantitative study and in qualitative interviews. Children and youth (ages 6-19) and their families participated in three to five coaching sessions, including an initial baseline goal setting session, with one additional follow-up session as well as the qualitative interviews. The Canadian Occupational Performance Measure and Goal Attainment Scaling were incorporated into initial coaching sessions and then re-administered by a blind assessor within one month post-intervention. Qualitative interviews were conducted at this time.Results: Statistically significant improvements were found in goal performance, satisfaction, and attainment. Interview data included consideration of both the content of the intervention (what the practitioner is doing) and the unique SFC-peds process (how the client feels about the intervention).Conclusions: SFC-peds may present an effective approach for working with children/youth with CP to achieve self-selected participation-oriented goals in a relatively short time-period.

Researching experiences of childhood brain injury: co-constructing knowledge with children through arts-based research methods.

Objective: In the knowledge base examining experiences of childhood brain injury, the perspectives of children with brain injury are notably lacking. This failure to represent the voices of pediatric clients has resulted in an incomplete knowledge base from which to inform evidence-based rehabilitation practice. In this paper, we examine why the perspectives of children with brain injury are rarely sought and propose a new way forward.Methods: We draw upon current evidence and practices in related fields and present an exemplar from an in-progress qualitative arts-based research project with children with brain injury.Results: Assumptions ingrained in research practices, particularly those surrounding the capacity of 'doubly vulnerable' children with brain injury to produce knowledge, have resulted in the relative exclusion of this group from research that concerns them. For the field to evolve, research practices must value children's first-hand accounts, engage them in co-constructing knowledge about their lives, and invite methods that meet their interests and abilities.Conclusion: By reframing how we think about the capacities of children with disabilities and shifting our research practices to include children with brain injury as knowledgeable participants, it becomes possible to expand the knowledge base upon which clinical rehabilitation practices are built.Implications for RehabilitationCurrent research practices preclude 'doubly vulnerable' pediatric populations, including children with brain injury, from actively contributing to research that concerns them.As a result, the perspectives of children with brain injury are virtually absent from research, rendering the evidence base upon which rehabilitative practices are built incomplete.Reframing how we think about the capacities of children with brain injury can shift how we engage with them, both in research and clinic, and may subsequently impact the knowledge available to us.Implications for client-centred rehabilitation are discussed, including the need to understand children as capable of insight into their own experience, as able to contribute to a more complete understanding of the health phenomena that affect them, and as invaluable and active participants in research and clinical care.

Does a picture speak louder than words? The role of infographics as a concussion education strategy.

Knowledge gaps exist regarding how to best educate audiences about concussion. Knowledge translation (KT) plays a critical role in how information is shared. In the field of concussion, infographics are becoming a popular KT strategy for synthesising and sharing information. Study objectives were to explore how infographics enhance concussion knowledge, infographic use and preferences across various stakeholders, and to determine their utility as a KT strategy. Six infographics were created to provide concussion information in a user-friendly and accessible format. A prospective design using a self-developed survey was conducted. Data were collected from youth (n = 78) and adults (n = 88) including students, teachers and healthcare professionals. Descriptive statistics exored perceived knowledge acquisition and infographic use. Thematic analysis of written feedback provided insight on participant responses. Participants identified that the infographics met their knowledge needs (91%) and provided them with new knowledge (87%). Participants also identified that they intend to use the infographics to build their knowledge (89%) and educate others (55%). Enhancement opportunities included incorporating graphics that appeal to different audiences and sharing the lived experiences of individuals who have a concussion. This study demonstrates the potential impact of infographics as a KT strategy that meets the knowledge needs of many audiences.

Fostering positive weight-related conversations between health care professionals, children, and families: Development of a knowledge translation Casebook and evaluation protocol.

BACKGROUND: Health care professionals (HCPs) must communicate with children and families about weight management in a sensitive and nonstigmatizing manner. However, HCPs receive little training in weight-related communication and have requested resources, but these are scarce. This article details the development process of a knowledge translation (KT) Casebook and outlines the proposed protocol for its implementation and evaluation. METHODS: Guided by the knowledge-to-action cycle, a KT Casebook aimed at HCPs integrated findings from a comprehensive scoping review with experiential and contextual evidence gathered through stakeholder workshops to provide guidance to HCPs communicating with children and families around weight-related issues. It was structured around five questions: (a) Who should participate in weight-related discussions? (b) When and how should the topic of weight be broached? (c) What terminology should be used? (d) How can HCPs enhance family engagement in weight-related discussions? (e) What specific communication techniques have been recommended? Checklists, evidence summaries, case studies, sentence starters, simulations, and other resources were clustered under each question. A dissemination strategy was developed using KT best practices and a pilot evaluation protocol designed. RESULTS: The Casebook was launched in November 2017 and has been presented at pediatric rehabilitation and obesity conferences. A communication strategy targeted multidisciplinary experts and organizations with weight management within their scope of practice. These efforts have resulted in 2,497 downloads across five countries to date. CONCLUSIONS: A practical and engaging KT Casebook was created to help foster positive weight-related conversations between HCPs, children, and their families. A pilot implementation study examining the impact of the Casebook on clinical practice will provide critical information for embedding the Casebook in a range of health care settings.

Exploring the ICF-CY as a framework to inform transition programs from pediatric to adult healthcare.

OBJECTIVE: To explore the utility of the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) for informing transition-related programs for youth with chronic conditions moving into adult healthcare settings, using an exemplar spina bifida program. METHODS: Semi-structured in-depth interviews were conducted with 53 participants (9 youth and 11 parents who participated in a spina bifida transition program, 12 young adults who did not, 12 clinicians, and 9 key informants involved in development/implementation). Interview transcripts were thematically analyzed, and then further coded using ICF-CY domain codes. RESULTS: ICF-CY domains captured many key areas regarding individuals" transitions to adult care and adult functioning, but did not fully capture concepts of transition program experience, independence, and parents" role. CONCLUSIONS: The ICF-CY framework captures some experiences of transitions to adult care, but should be considered in conjunction with other models that address issues outside of the domains covered by the ICF-CY.

Clinician and educator experiences of facilitating students' transition back to school following acquired brain injury: A qualitative systematic review.

OBJECTIVE: Transition back to school following paediatric acquired brain injury (ABI) is complex. It must be facilitated by healthcare and educational professionals, who need to work together to return affected students to learning. This qualitative systematic review synthesizes qualitative studies on clinicians' and educators' experiences of facilitating hospital-to-school transitions following ABI. METHODS: A search was conducted using seven electronic databases (CINAHL, Cochrane, EMBASE, ERIC, HealthSTAR, MEDLINE, PsycINFO) and key resources were manually reviewed. Publications selected for inclusion had a sample of clinicians and/or educators who worked with children/youth with ABI and focused on hospital-to-school transition processes from the professionals' perspectives. RESULTS: The initial search returned 4761 publications. Of those, 10 met the inclusion criteria. Six main themes emerged across those publications. Three related to transition barriers: (1) lack of training and education regarding transition processes; (2) lack of communication between stakeholders; and (3) lack of preparation for transition. The remaining three presented items that both facilitate and/or impede the transition process: (4) supports available; (5) linking agents; and (6) policies and procedures guiding transition. CONCLUSIONS: Clinicians and educators called for collaboration and communication to support students' transition back to school. Further inquiry into designated linking agents and policies that facilitate hospital-to-school transitions for students following ABI may address these lacking areas.

A Systematic Review of Hospital-to-School Reintegration Interventions for Children and Youth with Acquired Brain Injury.

OBJECTIVES: We reviewed the literature on interventions that aimed to improve hospital-to-school reintegration for children and youth with acquired brain injury (ABI). ABI is the leading cause of disability among children and youth. A successful hospital-to-school reintegration process is essential to the rehabilitative process. However, little is known about the effective components of of such interventions. METHODS AND FINDINGS: Our research team conducted a systematic review, completing comprehensive searches of seven databases and selected reference lists for relevant articles published in a peer-reviewed journal between 1989 and June 2014. We selected articles for inclusion that report on studies involving: a clinical population with ABI; sample had an average age of 20 years or younger; an intentional structured intervention affecting hospital-to-school transitions or related components; an experimental design; and a statistically evaluated health outcome. Two independent reviewers applied our inclusion criteria, extracted data, and rated study quality. A meta-analysis was not feasible due to the heterogeneity of the studies reported. Of the 6933 articles identified in our initial search, 17 articles (reporting on 350 preadolescents and adolescents, aged 4-19, (average age 11.5 years, SD: 2.21) met our inclusion criteria. They reported on interventions varying in number of sessions (one to 119) and session length (20 minutes to 4 hours). The majority of interventions involved multiple one-to-one sessions conducted by a trained clinician or educator, homework activities, and parental involvement. The interventions were delivered through different settings and media, including hospitals, schools, and online. Although outcomes varied (with effect sizes ranging from small to large), 14 of the articles reported at least one significant improvement in cognitive, social, psychological, or behavioral functioning or knowledge of ABI. CONCLUSIONS: Cognitive, behavioral, and problem-solving interventions have the potential to improve school reintegration for youth with ABI. However, more comprehensive interventions are needed to help link rehabilitation clinicians, educators, adolescents, and families.

A Qualitative Synthesis of Families' and Students' Hospital-to-School Transition Experiences Following Acquired Brain Injury.

Acquired brain injury (ABI) is one of the greatest causes of death and disability among children in Canada. Following ABI, children are required to transition back to school and adapt to the physical, cognitive, behavioral, social, and emotional demands of the school environment. We conducted a qualitative systematic review of students' and parents' experiences of the transition back to school following ABI. We identified 20 articles that met our inclusion criteria. Six themes emerged: (a) lack of ABI-specific education for families and professionals, (b) communication-related factors as a facilitator and/or barrier to transition, (c) emotional focus, (d) peer relationships, (e) supports, and (f) ABI sequelae in the classroom. Students' and families' personal motivations and abilities and the support they receive in their environment affect their experiences of transitioning back to school and the disrupted occupations they face.