A Case Study Implementing a Social Needs Screening Process and a Family Navigation Hub at Holland Bloorview Kids Rehabilitation Hospital.

Identifying and addressing clients' and families' most pressing social determinants of health needs are integral to quality healthcare. Healthcare leaders and front-line clinicians have long recognized the connection between unmet essential resource needs, such as food, housing and transportation and health outcomes. As a component of broader organizational efforts to improve equitable access to services, a social needs screening (SNS) initiative was introduced, along with a Family Navigation Hub providing navigation interventions. This paper describes the systematic approach taken to support the SNS initiative implementation and highlights evaluation results of the first year of activity.

The Value Filter: A Novel Framework for Psychosocial Adjustment to Traumatic Upper Extremity Amputation.

Purpose Upper extremity traumatic amputation due to work injury is a devastating injury with poor outcomes. As it does not appear to follow existing theories of psychosocial adjustment to injuries and illness, we sought to understand this problem by asking those who have sustained the injury, how they try to adjust. Methods Qualitative methods were used to interview 11 participants within 3 years of their accident. Questions included "Tell me about the impact of the amputation on your life". Data were systematically gathered and analyzed using a grounded theory (constructivist) approach which led to a preliminary model of adjustment. Results The Value of the Hand, and the Value of Working and Doing, emerged as central phenomena and created a Value Filter through which our participants' new experiences were interpreted. Two interacting themes, Instability of the Core Identity, and Efforts to Stabilize the Self, describe the effects of the process which either interfered with or promoted the formation of new values that, in turn, could lead to adjustment. Conclusions The preliminary model helps explain psychosocial adjustment for individuals with a traumatic upper extremity amputation due to work injury. The model may also be useful with other acquired injuries where the lost body part was deemed highly valuable for the individual's sense of self.

Integrating lived experience into clinical practice: a case study of young peer providers in pediatric rehabilitation.

PURPOSE: Youth Facilitators (YFs) are peer service providers (SPs) with childhood-onset disabilities working in pediatric rehabilitation teams. This study explored the YF role focusing on what work YFs do, the perceived facilitators and challenges pertinent to the role integration process, and the evolution of the role over the study period. METHODS: A longitudinal, qualitative case study approach was used to gather data over a total period of 14 months through interviews, focus groups, workload logs, and observations. Data were analyzed using the method of thematic analysis. RESULTS: Two YFs, 23 SPs and two managers participated in the study. YFs' work included independent consultation, resource provision, referral making, and program co-facilitation. Analysis produced two contrasting themes. When viewed as a representative of clients, YFs were considered bringing client perspectives to care, adding credibility to clinical services, and empowering clients and families through role modeling. However, when viewed as a professional SP, their expertise was questioned due to role unclarity, limited generalizability of lived experience, and organizational limitations. CONCLUSIONS: Training tailored to local care contexts and organizational supports are needed to transform YFs' experiential knowledge into experiential expertise. We propose strategies for optimal integration of peer providers into clinical care teams.Implications for rehabilitationAs peer service providers with lived experience of disabilities, Youth Facilitators (YFs) have the potential to benefit pediatric rehabilitation services by facilitating empowerment in clients and families as they navigate through life transitions.The YF scope of practice and training should be adapted to fit with individual clinical teams and local care contexts to help YFs establish their experiential expertise in interdisciplinary teams.Establishing YF's core competencies (e.g., advocacy, coaching, and boundary setting skills) can help transform their experiential knowledge into experiential expertise.

Bridging Pediatric and Adult Rehabilitation Services for Young Adults With Childhood-Onset Disabilities: Evaluation of the LIFEspan Model of Transitional Care.

Background: LIFEspan ("Living Independently and Fully Engaged") is a linked transition service model for youth and young adults with childhood-onset disabilities offered via an inter-agency partnership between two rehabilitation hospitals (one pediatric and one adult) in Toronto, Canada. Objective: The objective was to evaluate healthcare outcomes (continuity of care and healthcare utilization) for clients enrolled in LIFEspan. Methods: A prospective, longitudinal, observational mixed-method study design was used. The intervention group comprised youth with Acquired Brain Injury (ABI) and Cerebral Palsy (CP) enrolled in LIFEspan. A prospective comparison group comprised youth with Spina Bifida (SB) who received standard care. A retrospective comparison group comprised historical, disability-matched clients (with ABI and CP) discharged prior to model introduction. Medical charts were audited to determine continuity of care, i.e., whether study participants had at least one visit to an adult provider within 1 year post-discharge from the pediatric hospital. Secondary outcomes related to healthcare utilization were obtained from population-based, health service administrative datasets. Data were collected over a 3-year period: 2 years pre and 1 year post pediatric discharge. Rates were estimated per person-year. Fisher's Exact Test was used to examine differences between groups on the primary outcome, while repeated measures GEE Poisson regression was used to estimate rate ratios (post vs. pre) with 95% confidence intervals for the secondary outcomes. Results: Prospective enrolment comprised 30 ABI, 48 CP, and 21 SB participants. Retrospective enrolment comprised 15 ABI and 18 CP participants. LIFEspan participants demonstrated significantly greater continuity of care (45% had engagement with adult services in the year following discharge at 18 years), compared to the prospective SB group (14%). Healthcare utilization data were inconsistent with no significant changes in frequency of physician office visits, emergency department visits, or hospitalizations for clients enrolled in LIFEspan in the year following discharge, compared to the 2 years prior to discharge. Conclusion: Introduction of the LIFEspan model increased continuity of care, with successful transfer from pediatric to adult services for clients enrolled. Data on longer-term follow-up are recommended for greater understanding of the degree of adult engagement and influence of LIFEspan on healthcare utilization following transfer.

Perceived Impacts of Solution-Focused Coaching Training for Pediatric Rehabilitation Practitioners: A Qualitative Evaluation.

AIMS: This qualitative evaluation study assessed perceived impacts of a solution-focused coaching (SFC) training rolled out in a Canadian pediatric rehabilitation hospital from the perspective of clinical service providers. METHODS: Thirteen clinical service providers were interviewed six months after receiving 2-day SFC training. Participants retrospectively described perceived impacts of the training and benefits and challenges pertinent to the implementation of the SFC approach. Interview transcripts were transcribed verbatim and analyzed thematically. RESULTS: SFC training was considered making a valuable addition to participants' toolbox, increasing their confidence in developing positive therapeutic alliance with clients, and enhancing their strengths-based orientation. The training was also seen improving team cohesion and promoting collaborative solution-finding among team members. Structural barriers such as time constraints, lack of continuous organizational support and clear expectations around the use of the SFC approach were reported as factors impeding effective clinical adaptation. The need for tailoring the SFC approach to unique service contexts was also reported. CONCLUSIONS: Future SFC training initiatives should integrate a team-based approach and a culturally sensitive lens to help providers better assist clients in identifying their unique strengths. Follow-up training and continuous organizational support mechanisms will be vital for facilitating sustainable implementation after the initial training.

Impact of Solution-Focused Coaching Training on Pediatric Rehabilitation Specialists: A longitudinal evaluation study.

Fostering successful interprofessional collaboration remains a challenge in pediatric rehabilitation. A coaching approach can enhance client-centered care and provide a transdisciplinary framework for collaboration. The purpose of this longitudinal study was to evaluate the impact of Solution-Focused Coaching in Pediatric Rehabilitation (SFC-peds) training on pediatric rehabilitation practitioners from multiple disciplinary backgrounds. Thirty-seven service providers (SPs) completed surveys at baseline and three follow-ups. Quantitative and qualitative findings both suggested that the training proved an effective way to achieve substantial and sustainable improvements in SFC knowledge, confidence, and use of SFC-peds techniques among participating SPs. The educational intervention also facilitated the integration of a strengths-based, solution-building approach at an individual and team level, providing SPs with a common language and shared framework for client-centered care and optimal collaboration with colleagues. A need for practice opportunities tailored to unique care contexts was identified. Future research should further explore the impacts of a SFC-peds approach on interprofessional teams, as well as on health outcomes of clients.

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.

Clinical Documentation in an Era of Increasing Transparency: The Impact of Electronic Portals on Care.

Electronic health records (EHRs) and consumer health portals have implications for improving the quality and cost-effectiveness of healthcare and make it much easier for patients and families to access health information in a timely and convenient manner. However, the accessibility of information afforded by EHRs and health portals changes the dynamic of control over health information in very significant ways. Institutions and their clinicians have typically been the caretakers of these documents; therefore, the introduction of portals represents a major cultural shift in healthcare. The efforts of both clinicians and patients are needed to effectively make this shift, as the implementation of new technology is uniquely challenging within a healthcare setting. An interactive workshop was facilitated to understand clinicians' perceived challenges of this shift with a specific focus on the implications of increased transparency and patients' increased access to health information.

Connecting Families to Their Health Record and Care Team: The Use, Utility, and Impact of a Client/Family Health Portal at a Children's Rehabilitation Hospital.

BACKGROUND: Health care portals have the potential to provide consumers with timely, transparent access to health care information and engage them in the care process. OBJECTIVE: The objective was to examine the use, utility, and impact on engagement in care and caregiver-provider communication of a client/family portal providing access to electronic health records (EHRs) and secure, 2-way e-messaging with care providers. METHODS: We conducted a prospective, mixed-methods study involving collection of caregivers' portal usage information over a 14-month period (from portal introduction in January 2015 to the end of the study period in March 2016), a Web-based survey for caregivers administered after a minimum of 2 months' exposure to the portal and repeated 2 months later, and focus groups or individual interviews held with caregivers and service providers at the same points in time. The survey assessed caregivers' perceptions of the utility of and satisfaction with the EHR and e-messaging, and the portal's impact on client engagement and perceptions of caregiver-provider communication. A total of 18 caregivers (parents) completed surveys and 6 also took part in focus groups or interviews. In addition, 5 service providers from different disciplines took part in focus groups or interviews. RESULTS: Although usage patterns varied, the typical pattern was a steady level of use (2.5 times a month over an average of 9 months), which is higher than typically reported use. The portal pages most frequently accessed were the home page, health record main page, appointment main page, and reports main page. The Web-based survey captured caregivers' perceptions of usefulness of and satisfaction with the EHR and portal messaging, as well as the portal's impact on their engagement in care and perceptions of caregiver-provider communication. The surveys indicated a moderate degree of utility of and satisfaction with the portal features, and a low but emerging impact on engagement in care and caregiver-provider communication (survey scales measuring these outcomes displayed excellent internal consistency, with Cronbach alpha ranging from .89 to .95). Qualitative themes from focus groups and interviews supported and extended the survey findings. Caregivers and service providers saw appreciable information benefits and provided recommendations to increase portal use and utility. Caregivers focused on the scope of organizational adoption of the portal system and indicated their hopes for the future of the portal, whereas service providers were concerned about how to best manage their investment of time and effort in preparing client-friendly reports and messaging clients via the portal. CONCLUSIONS: Overall, the findings show the promise of the portal and the need for ongoing evaluation to show the portal's ultimate potential in enhancing engagement in care and communication with care providers.

Perspectives of school-work transitions among youth with spina bifida, their parents and health care providers.

Purpose Youth with disabilities encounter many challenges in finding employment and transitioning to post-secondary education. In this article, we explore the nature of school-work transitions for youth with spina bifida, which few studies have previously addressed. Method We conducted in-depth interviews with 44 participants (nine youth and 12 young adults with spina bifida, 11 parents and 12 clinicians). We analyzed our data using a qualitative content analysis approach. Results We identified several enablers to school-work transitions, including professional support, social support and school accommodations. Lacking such support created several challenges for youth with spina bifida. We also identified several barriers to school-work transitions, including lack of education and information on finances, housing and transportation; discrimination and stigma; and challenges coping with spina bifida at school and work. Conclusions Although some supports are available, youth with spina bifida encounter many challenges in transitioning to post-secondary education and employment. With clinicians at the helm, efforts should be put in place within the health and social services system to better prepare youth, as they transition to adulthood, to become connected to appropriate information and resources to help them to succeed in their school and employment goals. Implications for Rehabilitation Youth with spina bifida encounter many challenges in transitioning to post-secondary education or work. Clinicians, educators and parents should continue to support youth with spina bifida in choosing their vocations, setting career goals and developing career plans. Starting from a young age, parents, clinicians and educators should help youth with spina bifida prepare for school work transitions by fostering their independence, life skills and self-management of spina bifida-related symptoms. Clinicians and educators should help connect youth with spina bifida to appropriate information and resources to support their school-work transitions, including information on finances, housing, transportation, school accommodations and employment supports.

Youth and parents' experiences of a new inter-agency transition model for spina bifida compared to youth who did not take part in the model.

BACKGROUND: Young adults with spina bifida are underserved in health care and are at risk as they transition to adult health care. A pediatric rehabilitation hospital and an adult community health center partnered to help address this gap. Although some research has explored general transition experiences of youth with disabilities, little is known about their experiences in a transition model that involves an inter-agency partnership, continuous, age-appropriate, and client-centered care. OBJECTIVE: To explore youth and parent experiences of a new transition model for youth with spina bifida, compared to the experiences of young adults with spina bifida who did not participate in the model. METHODS: Using a descriptive, qualitative design involving a thematic analysis we conducted semi-structured interviews with 32 participants (9 youth, 11 parents, 12 young adults). RESULTS: Most youth and parents in our sample who took part in the new model felt supported by pediatric providers and benefitted from gradually transferring responsibility from parents to youth. They also reported experiencing challenges, including lack of support from primary care providers and lack of clarity about the new model. Many young adults who did not take part in the model reported receiving some transition-related thought support from pediatric specialists, parents, and in some cases, primary care providers. However, they also reported experiencing gaps in their continuity of care and needed more support with employment, relationships, finances, and housing. CONCLUSIONS: Our findings show the new transition model for youth with spina bifida can help enhance participants' transition experiences and preparation for adulthood. However, the model needs further development to address the varied abilities and support needs of youth with spina bifida.

Implementing Patient-Oriented Discharge Summaries (PODS): A Multisite Pilot Across Early Adopter Hospitals.

Communication gaps when patients transition from hospital to either home or community can be problematic. Partnership between Toronto Central Local Health Integration Network (TC LHIN) and OpenLab addressed this through the Patient-Oriented Discharge Summaries (PODS) project. From January through March 2015, eight hospital departments across Toronto came together to implement the PODS, a tool previously developed through a co-design process involving patients, caregivers and providers. This paper presents data on how the hospitals came together and the impact of PODS on the patient and provider experience across these hospitals and discusses it implications.

Gender and Transition From Pediatric to Adult Health Care Among Youth With Acquired Brain Injury: Experiences in a Transition Model.

OBJECTIVE: To explore gender and sex differences in experiences of transitioning to adult health care among young adults with acquired brain injury (ABI) who take part in a coordinated model of transitional care. DESIGN: Descriptive design using in-depth semistructured qualitative interviews. SETTING: Interviews over the phone and in person. PARTICIPANTS: Participants (N=18) included 10 young adults with a diagnosis of ABI (4 women, 6 men; age range, 19-21y) and 9 parents (8 women, 1 man) from the Greater Toronto Area, Ontario, Canada. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Semistructured interviews with participants. RESULTS: Our findings highlight several commonalities and differences relative to sex and gender among young adults with ABI who are transitioning from pediatric to adult care. Both young adult men and women experienced a similar transition process and similar organization, continuity, and availability of care. Sex differences were found in relational factors (eg, communication, family involvement, social support). Young adult men, and parents of the men, differed in their transition regarding relational factors (eg, communication, family involvement). CONCLUSIONS: Our findings show that young adult men and women with ABI who have taken part in a transition preparation program experience similarities in organization, continuity, and availability of care, but they experience differences in relational factors (eg, communication, family involvement).

Supporting Client and Family Engagement in Care Through the Planning and Implementation of an Online Consumer Health Portal.

Web-based portals and electronic health records are making it easier for clients and families to access health information. This improved transparency and access to information has the potential to promote activation and improve outcomes, but to realize these benefits, the information needs to be valuable, meaningful, and understandable. Engagement of the end users in the planning and implementation will ensure that the product meets the needs of the consumers. The purpose of this case study is to describe the client and family engagement strategies that were employed to support the process of planning and implementing an online consumer health portal at a pediatric rehabilitation hospital to support the successful launch of this new information-sharing technology platform.

Simulation for System Change: Holland Bloorview's Experience Using Simulation to Enhance the Use of Technology at the Point-Of-Care.

Simulation has the potential to invigorate teaching practices, facilitate professional development and impact client care. However, there is little literature on using simulation at the level of organizational change in healthcare. In this paper, the authors explore Holland Bloorview Kids Rehabilitation Hospital's experience using simulation to enhance the use of technology at the point-of-care. The simulation event demonstrated documentation using technology in two typical practice environments and allowed learners to discuss the challenges and opportunities. Participant feedback was positive overall, and this article reveals important lessons to support the future use of simulation as an educational tool for organizational change.

The LIFEspan model of transitional rehabilitative care for youth with disabilities: healthcare professionals' perspectives on service delivery.

PURPOSE: LIFEspan is a service delivery model of continuous coordinated care developed and implemented by a cross-organization partnership between a pediatric and an adult rehabilitation hospital. Previous work explored enablers and barriers to establishing the partnership service. This paper examines healthcare professionals' (HCPs') experiences of 'real world' service delivery aimed at supporting transitional rehabilitative care for youth with disabilities. METHODS: This qualitative study - part of an ongoing mixed method longitudinal study - elicited HCPs' perspectives on their experiences of LIFEspan service delivery through in-depth interviews. Data were categorized into themes of service delivery activities, then interpreted from the lens of a service integration/coordination framework. RESULTS: Five main service delivery themes were identified: 1) addressing youth's transition readiness and capacities; 2) shifting responsibility for healthcare management from parents to youth; 3) determining services based on organizational resources; 4) linking between pediatric and adult rehabilitation services; and, 5) linking with multi-sector services. CONCLUSIONS: LIFEspan contributed to service delivery activities that coordinated care for youth and families and integrated inter-hospital services. However, gaps in service integration with primary care, education, social, and community services limited coordinated care to the rehabilitation sector. Recommendations are made to enhance service delivery using a systems/sector-based approach.

Longitudinal Evaluation of Transition Services ("LETS Study"): protocol for outcome evaluation.

BACKGROUND: Because of advances in medical treatment, most children with physical disabilities can expect to achieve near normal life spans. Typically, coordinated teams of health care providers in specialized pediatric settings care for these children. As these children reach adulthood, however, the availability of services and expertise changes because the adult health care system has different processes designed to meet their specialized needs. Gaps in continuity of care during the transition from pediatric to adult services, and associated poor health outcomes are well documented. In response, new models of care are being introduced to address the complex process of health care transition. This paper describes a study protocol of a client-centred, prospective, longitudinal, mixed-method evaluation of linked model of health care across the lifespan (the LIFEspan Model), offered by a pediatric rehabilitation centre and an adult rehabilitation centre. METHOD: This project will include a process and an outcome evaluation of the LIFEspan Model. The process evaluation will detail the specific service delivery that occurs with respect to preparation for transition and transfer of care through chart audits of pediatric medical records and qualitative interviews with LIFEspan staff. The outcome evaluation will measure the effect of the model on: 1) maintaining continuity within the health care system from pediatric to adult care; and 2) secondary outcomes related to health, well-being, social participation, transition readiness, and health care utilization of youth with cerebral palsy and acquired brain injury. Standardized instruments will include Health Utilities Inventory, Assessment of Life Habits, Arc's Self-Determination, Assessment of Health-Related Quality of Life, Partners in Health Questionnaire, Social Support Questionnaire, and Self-Efficacy for Managing Chronic Disease. DISCUSSION: The LETS study will be original in its undertaking of a prospective examination of outcomes 1-year post-transition, use of multiple comparison groups, and absence of disability-related exclusion criteria ensuring that the transition experiences of varied populations of young people and their families will be represented. TRIAL REGISTRATION: http://www.clinicaltrials.gov, ID NCT00975338.