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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.
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Atenção à Saúde , Hospitais de Reabilitação , Humanos , Países Baixos , Qualidade da Assistência à SaúdeRESUMO
BACKGROUND: COVID-19 disproportionately impacted patients with cancer as a result of direct infection, and delays in diagnosis and therapy. Oncological clinical trials are resource-intensive endeavors that could be particularly susceptible to disruption by the pandemic, but few studies have evaluated the impact of the pandemic on clinical trial conduct. PATIENTS AND METHODS: This prospective, multicenter study assesses the impact of the pandemic on therapeutic clinical trials at two large academic centers in the Northeastern United States between December 2019 and June 2021. The primary objective was to assess the enrollment on, accrual to, and activation of oncology therapeutic clinical trials during the pandemic using an institution-wide cohort of (i) new patient accruals to oncological trials, (ii) a manually curated cohort of patients with cancer, and (ii) a dataset of new trial activations. RESULTS: The institution-wide cohort included 4756 new patients enrolled to clinical trials from December 2019 to June 2021. A major decrease in the numbers of new patient accruals (-46%) was seen early in the pandemic, followed by a progressive recovery and return to higher-than-normal levels (+2.6%). A similar pattern (from -23.6% to +30.4%) was observed among 467 newly activated trials from June 2019 to June 2021. A more pronounced decline in new accruals was seen among academically sponsored trials (versus industry sponsored trials) (P < 0.05). In the manually curated cohort, which included 2361 patients with cancer, non-white patients tended to be more likely taken off trial in the early pandemic period (adjusted odds ratio: 2.60; 95% confidence interval 1.00-6.63), and substantial pandemic-related deviations were recorded. CONCLUSIONS: Substantial disruptions in clinical trial activities were observed early during the pandemic, with a gradual recovery during ensuing time periods, both from an enrollment and an activation standpoint. The observed decline was more prominent among academically sponsored trials, and racial disparities were seen among people taken off trial.
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COVID-19 , Neoplasias , COVID-19/epidemiologia , Humanos , Oncologia , Neoplasias/epidemiologia , Neoplasias/terapia , Pandemias , Estudos ProspectivosRESUMO
Transition to adult life can be a challenging time for disabled youth and their families. This article describes the collaborative creation of Transitions Theatre, a research-based reader's theatre activity based on narrative interviews with eight disabled youth (aged 17-22) and seven parents. Analysis of these interviews generated two opposing yet interrelated themes. On one hand, youth and families felt lost in transition facing multiple gaps in healthcare, financial support, education, and opportunities for social participation after having "aged out" of the pediatric system. On the other hand, they started cripping "normal" adulthood to envision more inclusive futures wherein disabilities are understood as integral to society. These two themes were transformed into two reader's theatre scripts, one featuring a youth, the other featuring a parent. Seven youth and four parents (six of them were original interview participants) then participated in a Transitions Theatre workshop to read the scripts together and discuss the authenticity and relatability of the scripts. Participant feedback suggested that the reader's theatre method was effective in sharing findings with research participants and stimulating a critical dialogue on how to (re)imagine transition to adulthood. We discuss the importance of implementing inclusive design strategies to make reader's theatre accessible to participants with diverse abilities and preferences.
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Crianças com Deficiência , Adulto , Adolescente , Criança , Humanos , Pais , Atenção à Saúde/métodos , Participação SocialRESUMO
BACKGROUND: Patients with cancer may be at high risk of adverse outcomes from severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. We analyzed a cohort of patients with cancer and coronavirus 2019 (COVID-19) reported to the COVID-19 and Cancer Consortium (CCC19) to identify prognostic clinical factors, including laboratory measurements and anticancer therapies. PATIENTS AND METHODS: Patients with active or historical cancer and a laboratory-confirmed SARS-CoV-2 diagnosis recorded between 17 March and 18 November 2020 were included. The primary outcome was COVID-19 severity measured on an ordinal scale (uncomplicated, hospitalized, admitted to intensive care unit, mechanically ventilated, died within 30 days). Multivariable regression models included demographics, cancer status, anticancer therapy and timing, COVID-19-directed therapies, and laboratory measurements (among hospitalized patients). RESULTS: A total of 4966 patients were included (median age 66 years, 51% female, 50% non-Hispanic white); 2872 (58%) were hospitalized and 695 (14%) died; 61% had cancer that was present, diagnosed, or treated within the year prior to COVID-19 diagnosis. Older age, male sex, obesity, cardiovascular and pulmonary comorbidities, renal disease, diabetes mellitus, non-Hispanic black race, Hispanic ethnicity, worse Eastern Cooperative Oncology Group performance status, recent cytotoxic chemotherapy, and hematologic malignancy were associated with higher COVID-19 severity. Among hospitalized patients, low or high absolute lymphocyte count; high absolute neutrophil count; low platelet count; abnormal creatinine; troponin; lactate dehydrogenase; and C-reactive protein were associated with higher COVID-19 severity. Patients diagnosed early in the COVID-19 pandemic (January-April 2020) had worse outcomes than those diagnosed later. Specific anticancer therapies (e.g. R-CHOP, platinum combined with etoposide, and DNA methyltransferase inhibitors) were associated with high 30-day all-cause mortality. CONCLUSIONS: Clinical factors (e.g. older age, hematological malignancy, recent chemotherapy) and laboratory measurements were associated with poor outcomes among patients with cancer and COVID-19. Although further studies are needed, caution may be required in utilizing particular anticancer therapies. CLINICAL TRIAL IDENTIFIER: NCT04354701.
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COVID-19 , Neoplasias , Idoso , Teste para COVID-19 , Feminino , Humanos , Masculino , Neoplasias/tratamento farmacológico , Neoplasias/epidemiologia , Pandemias , SARS-CoV-2RESUMO
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.
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Tutoria , Canadá , Criança , Atenção à Saúde , Humanos , Pesquisa Qualitativa , Estudos RetrospectivosRESUMO
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.
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Pessoal de Saúde/educação , Relações Interprofissionais , Tutoria/organização & administração , Pediatria/educação , Reabilitação/educação , Especialização , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Estudos Longitudinais , Planejamento de Assistência ao Paciente , Equipe de Assistência ao Paciente/organização & administração , Assistência Centrada no PacienteRESUMO
BACKGROUND: Argonaute-2 (Ago2) is an essential component of microRNA biogenesis implicated in tumourigenesis. However Ago2 expression and localisation in breast cancer remains undetermined. The aim was to define Ago2 expression (mRNA and protein) and localisation in breast cancer, and investigate associations with clinicopathological details. METHODS: Ago2 protein was stained in breast cancer cell lines and tissue microarrays (TMAs), with intensity and localization assessed. Staining intensity was correlated with clinicopathological details. Using independent databases, Ago2 mRNA expression and gene alterations in breast cancer were investigated. RESULTS: In the breast cancer TMAs, 4 distinct staining intensities were observed (Negative, Weak, Moderate, Strong), with 64.2% of samples stained weak or negatively for Ago2 protein. An association was found between strong Ago2 staining and, the Her2 positive or basal subtypes, and between Ago2 intensity and receptor status (Estrogen or Progesterone). In tumours Ago2 mRNA expression correlated with reduced relapse free survival. Conversely, Ago2 mRNA was expressed significantly lower in SK-BR-3 (HER2 positive) and BT-20 (Basal/Triple negative) cell lines. Interestingly, high levels of Ago2 gene amplification (10-27%) were observed in breast cancer across multiple patient datasets. Importantly, knowledge of Ago2 expression improves predictions of breast cancer subtype by 20%, ER status by 15.7% and PR status by 17.5%. CONCLUSIONS: Quantification of Ago2 improves the stratification of breast cancer and suggests a differential role for Ago2 in breast cancer subtypes, based on levels and cellular localisation. Further investigation of the mechanisms affecting Ago2 dysregulation will reveal insights into the molecular differences underpinning breast cancer subtypes.
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Proteínas Argonautas/metabolismo , Biomarcadores Tumorais/metabolismo , Neoplasias da Mama/metabolismo , Neoplasias da Mama/patologia , Proteínas Argonautas/genética , Biomarcadores Tumorais/genética , Biópsia , Neoplasias da Mama/genética , Linhagem Celular Tumoral , Estudos de Coortes , Intervalo Livre de Doença , Feminino , Amplificação de Genes , Expressão Gênica , Humanos , Estimativa de Kaplan-Meier , Pessoa de Meia-Idade , Estadiamento de Neoplasias , RNA Mensageiro/genética , Receptor ErbB-2/metabolismo , Receptores de Estrogênio/metabolismo , Receptores de Progesterona/metabolismo , Estatísticas não ParamétricasRESUMO
It has been highlighted that the original manuscript [1] contains a typesetting error regarding the authorship.
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BACKGROUND: Recent studies have shown that breast cancer subtype can change from the primary tumour to the recurrence. Discordance between primary and recurrent breast cancer has implications for further treatment and ultimately prognosis. The aim of the study was to determine the rate of change between primary and recurrence of breast cancer and to assess the impact of these changes on survival and potential treatment options. METHODS: Patient demographics were collected on those who underwent surgery for breast cancer between 2001 and 2014 and had a recurrence with biopsy results and pathology scoring of both the primary and recurrence. RESULTS: One hundred thirty two consecutive patients were included. There were 31 (23.5%) changes in subtype. Discordance occurred most frequently in luminal A breast cancer (n = 20), followed by triple negative (n = 4), luminal B (n = 3) and HER2 (n = 3). Patients who changed from luminal A to triple negative (n = 18) had a significantly worse post-recurrence survival (p < 0.05) with overall survival approaching significance (p = 0.064) compared to concordant luminal A cases (n = 46). Overall receptor discordance rates were: estrogen receptor 20.4% (n = 27), progesterone receptor 37.7% (n = 50) and HER2 3% (n = 4). Loss of estrogen receptor and progesterone receptor was more common than gain (21 vs. 6 (p = 0.04) and 44 vs. 6 (p = 0.01) respectively). Nine patients (6.8%) gained receptor status potentially impacting treatment options. CONCLUSION: Discordance in subtype and receptor status occurs between primary and recurrent breast cancer, ultimately affecting survival and potentially impacting treatment options.
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Animal feed is routinely supplemented with exogenous enzymes to improve nutrient utilization, such as proteases to enhance protein hydrolysis in vivo and xylanases to alleviate feed related anti-nutritional factors. The present studies were conducted to evaluate the potential oral toxicity and genotoxicity of a dual-enzyme preparation, Vegpro® concentrate (VPr-C). Acute oral toxicity studies were conducted in adult male and female Sprague-Dawley Crl CD rats and CHS Swiss ICO:OFI (IOPS Caw) mice. Thirteen week preliminary and final subchronic oral toxicity studies were conducted in male and female rats. Genotoxicity was evaluated through a bacterial reverse mutation test (Ames test), an in-vitro mammalian chromosomal aberration test, and a mammalian micronucleus test. The LD50 was >2000 mg/kg of BW in mice and rats. In the 13-week oral toxicity study, the No Observed Adverse Effects Level (NOAEL) was 1000 mg/kg BW per day for females and 300 mg/kg BW per day for males. VPr-C showed no mutagenic activity in Salmonella typhimurium, did not induce significant chromosomal aberrations in cultured human lymphocytes, and did not increase the frequency or proportion of micronucleated immature erythrocytes in mice. There was no evidence of acute or subchronic toxicity or genotoxicity associated with the test article at these test dosages.
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Ração Animal/toxicidade , Enzimas/toxicidade , Animais , Aberrações Cromossômicas , Feminino , Humanos , Linfócitos/efeitos dos fármacos , Masculino , Camundongos , Testes para Micronúcleos , Nível de Efeito Adverso não Observado , Ratos , Ratos Sprague-Dawley , Testes de Toxicidade Aguda , Testes de Toxicidade SubcrônicaRESUMO
INTRODUCTION: Triple-negative breast cancers (TNBC) are associated with a poor prognosis owing to an aggressive phenotype. We aimed to carry out a prospective study comparing management strategies and response to therapy in TNBC and non-TNBC patients. METHODS: Data were obtained from a prospectively maintained database of patients treated for breast cancer. RESULTS: A total of 142 TNBC and 142 age-, stage- and NPI-matched non-TNBC patients were treated. The difference in overall survival between the 2 groups was statistically significant (77% of TNBC patients alive at a mean follow-up of 32 months, versus 92% of non-TNBC patients at a mean follow-up of 38 months, P = 0.0 Log rank test). This survival difference was found to be independent of NPI (P = 0.0 Log rank test). Locoregional recurrence rates were similar between TNBC patients who were treated with wide local excision versus mastectomy (P = 0.449 Log rank test). A significant difference in survival was noted between TNBC patients who responded differentially to neoadjuvant chemotherapy (P = 0.035 Log rank test). CONCLUSION: Patients with TNBC have adverse outcomes despite aggressive treatment. The development of effective targeted therapies is essential for this breast cancer subtype.
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Mastectomia/métodos , Neoplasias de Mama Triplo Negativas/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/mortalidade , Neoplasias da Mama/patologia , Neoplasias da Mama/terapia , Terapia Combinada , Feminino , Humanos , Excisão de Linfonodo/métodos , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/mortalidade , Recidiva Local de Neoplasia/patologia , Recidiva Local de Neoplasia/terapia , Estadiamento de Neoplasias , Prognóstico , Estudos Prospectivos , Análise de Sobrevida , Resultado do Tratamento , Neoplasias de Mama Triplo Negativas/mortalidade , Neoplasias de Mama Triplo Negativas/patologia , Adulto JovemRESUMO
Risk assessment forms the basis for both occupational health decision-making and the development of occupational exposure limits (OELs). Although genetic and epigenetic data have not been widely used in risk assessment and ultimately, standard setting, it is possible to envision such uses. A growing body of literature demonstrates that genetic and epigenetic factors condition biological responses to occupational and environmental hazards or serve as targets of them. This presentation addresses the considerations for using genetic and epigenetic information in risk assessments, provides guidance on using this information within the classic risk assessment paradigm, and describes a framework to organize thinking about such uses. The framework is a 4 × 4 matrix involving the risk assessment functions (hazard identification, dose-response modeling, exposure assessment, and risk characterization) on one axis and inherited and acquired genetic and epigenetic data on the other axis. The cells in the matrix identify how genetic and epigenetic data can be used for each risk assessment function. Generally, genetic and epigenetic data might be used as endpoints in hazard identification, as indicators of exposure, as effect modifiers in exposure assessment and dose-response modeling, as descriptors of mode of action, and to characterize toxicity pathways. Vast amounts of genetic and epigenetic data may be generated by high-throughput technologies. These data can be useful for assessing variability and reducing uncertainty in extrapolations, and they may serve as the foundation upon which identification of biological perturbations would lead to a new paradigm of toxicity pathway-based risk assessments.
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Epigênese Genética , Substâncias Perigosas/toxicidade , Exposição Ocupacional/normas , Saúde Ocupacional/normas , Interação Gene-Ambiente , Genética , Humanos , Exposição Ocupacional/análise , Polimorfismo Genético , Medição de Risco , Toxicogenética/métodosRESUMO
AIMS: There is little empirical evidence about the effectiveness of life skills programs in preparing youth with disabilities for successful participation in adult life. This retrospective study examined the effectiveness of an experiential life skills coaching intervention. METHODS: Using Goal Attainment Scaling (GAS) and the Canadian Occupational Performance Measure (COPM) as outcome measures, we compared the effectiveness of group-based and one-to-one interventions on goal attainment, and explored whether this was affected by gender or goal domain. RESULTS: We found that goal attainment was statistically and clinically significant for all genders and intervention formats. No differences in goal attainment were found between group and one-to-one interventions. CONCLUSIONS: These results provide evidence for the effectiveness of goal-focused, community-based experiential life skills interventions to support skill development in youth with a disability and help them prepare for transition to adult life.
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Atividades Cotidianas , Crianças com Deficiência/educação , Crianças com Deficiência/reabilitação , Educação Inclusiva/métodos , Terapia Ocupacional/métodos , Avaliação de Resultados em Cuidados de Saúde , Adolescente , Feminino , Objetivos , Humanos , Acontecimentos que Mudam a Vida , Masculino , Ontário , Ajustamento Social , Apoio SocialRESUMO
Background: When transitioning to adulthood, youth with disabilities and their families face many service gaps. Successful inter-agency collaborations can promote family-centred, inclusive transition support amenable to personal choice and health conditions. This paper reports the 3-year co-design process of an innovative transition service that links a pediatric hospital and adult service agencies and addresses key areas of transition preparedness with joint accountability. Methods: A team of pediatric rehabilitation professionals, adult service providers, young adults with disabilities and their families, and researchers engaged in a co-design process over three years. Following a design thinking (DT) framework, the team went through an iterative process of Empathize. Define, Ideation, Prototyping, and Testing phases. The trial-and-error process allowed for deeper reflection and an opportunity to pivot the design. Results: The co-design yielded Transitions Pop-ups, a nimble service model that can "pop up" at critical times and places to meet clients' urgent and emergent transition-related needs. Two pilot sessions were conducted at the testing phase with adult service agencies. The final model included five key elements: (1) community partnership; (2) targeted information sharing; (3) peer mentoring; (4) action (on-the-spot completion of a key transition task/activity such as submitting an adult funding application); and (5) warm handover. Conclusion: The co-design process highlighted the importance of open communication and iterative prototype testing as a means for trialing new ideas and clarifying the intent of the project. The DT framework optimally facilitated the co-development of a contextually relevant and sustainable service model for pediatric rehabilitation clients and families.
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PURPOSE: Social connections are essential for the development of life skills for youth. Youth with disabilities have long faced barriers to meaningful social connections. The onset of COVID-19 increased barriers to social connections for all youth, and also led to enhanced use of virtual platforms in paediatric rehabilitation programming. Harnessing this opportunity, service providers created a suite of online programs to foster social connections and friendships. The current study explores participant and service provider experiences of such programs. METHODS: This qualitative descriptive study used interviews and focus groups to explore how youth with disabilities (n = 8), their parents (n = 7), and service providers (n = 13) involved in program development and delivery experienced the programs, the accessibility of the virtual platforms, and their social connections in relation to program participation. RESULTS: Participants were satisfied with the programs' content, accessibility and ability to meet their social needs. Qualitative themes included facilitating social connections, accessibility of virtual spaces, and recommendations for future virtual programming. DISCUSSION: For youth with disabilities who have been historically marginalized in social spheres, the newly ubiquitous infrastructure regarding virtual programming must be supported and enhanced. A hybrid approach involving virtual/in-person options in future programming is recommended.
Youth with disabilities can benefit from social connections on virtual platforms in terms of physical access to social spaces and opportunities to communicate in alternative waysFor some youth with disabilities, virtual social connections can be the only feasible and readily available option for reducing social isolation due to physical barriers to accessWhen offering virtual program options, service providers should consider the various benefits of connecting with the physical, communication-based, interaction-based, access-based and other barriers to virtual connection.
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AIM: This article presents a four-part model of community-focused therapeutic recreation and life skills services for children's rehabilitation centres. METHOD AND RESULTS: The model is based on 15 years of clinical and management practice in a Canadian context combined with evidence from the literature on community-focused service delivery. The model incorporates an ecological approach and principles from models of therapeutic recreation, community capacity building, and health promotion, as well as client/family-centred care. The four pillars of the model reflect a set of integrated services and principles designed to support the participation of children and youth with disabilities in community activities. The pillars involve providing community outreach services, providing community development services, sharing physical and educational resources with community partners, and promoting the organization as a community facility that provides adapted physical space and specialized instruction. The lessons learned in implementing the model are discussed, including the importance of ensuring the sustainability of community recreation programmes. CONCLUSIONS: The model will be of use to managers and service organizations seeking to develop an integrated programme of community-focused therapeutic recreation and life skills services based on a collaborative capacity-building approach.
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Serviços de Saúde da Criança/organização & administração , Serviços de Saúde Comunitária/organização & administração , Pessoas com Deficiência/reabilitação , Modelos Organizacionais , Terapia Recreacional/organização & administração , Atividades Cotidianas , Adolescente , Criança , Prestação Integrada de Cuidados de Saúde/organização & administração , Crianças com Deficiência/reabilitação , Promoção da Saúde/organização & administração , Humanos , Ontário , Participação Social , Terminologia como AssuntoRESUMO
PURPOSE: Employment participation offers benefits including income, sense of accomplishment, social engagement, and meaningful contribution to society. Rates of competitive employment of youth with disabilities are amongst the lowest in society, despite having capacity and motivation to participate in the workplace. The marginalization of young workers with disability presents a lost opportunity for youth, potential employers, and social care systems. In order to engage young people with disabilities in employment, we present an integrated, community-based model for employment participation preparation. MATERIALS AND METHODS: The employment participation pathway model is based on best available evidence and 15 years of program delivery for youth with disabilities preparing to transition out of school and into employment in the Canadian context. It was conceptualized using the Knowledge to Action framework and presented for consideration in the current paper. RESULTS: Starting early, taking a person-directed approach to planning, and considering the individual and our systems contribute to effective and comprehensive transition to employment. CONCLUSIONS: The employment participation model provides evidence and examples for service providers to consider integrating into their repertoire and begin to construct similar pathways to equip their clients and families with skills, capacities, and knowledge as they journey towards workplace participation.IMPLICATIONS FOR REHABILITATIONEmployment for individuals with disabilities is lower than the national average, with rates being even lower for young people (ages 15-25) with disabilities.Low workplace participation for individuals with disabilities is particularly troubling due to the myriad social and health benefits of engagement in employment.Programs that start early (during high school) and provide ongoing, community-integrated support are reported to be most beneficial to the eventual job attainment and retention for young job seekers with disabilities.The presented employment participation pathway model that was developed using the Knowledge to Action Framework integrates evidence and best practices to support service providers in facilitating progressive workplace participation for clients and families.
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Pessoas com Deficiência , Emprego , Humanos , Adolescente , Canadá , Local de Trabalho , RendaRESUMO
This paper outlines a qualitative exploration of the experiences of Youth in Charge (YiC), a 3-year pilot programme. YiC was designed to promote early, immersive community participation for students with physical disabilities, and was co-developed/co-hosted by three agencies (hospital, community rehabilitation, school board). To better understand the experiences of the youth, parents, and staff involved in this broad intervention, observation of 10 programme sessions and annual semi-structured interviews with youth (n = 5), parents (n = 4) and staff (n = 6) were undertaken. Qualitative results comprise six themes based in the two major thematic areas of participation-related experiences and programme considerations. Results indicate the need for community-based experiences, measured risk-taking, long-term engagement, parental involvement, and greater interagency collaboration and integration.
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Pessoas com Deficiência , Humanos , Adolescente , Pessoas com Deficiência/reabilitação , Pais , Instituições AcadêmicasRESUMO
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.
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Pessoas com Deficiência , Grupo Associado , Adolescente , Humanos , Criança , Pesquisa Qualitativa , Atenção à Saúde , Grupos FocaisRESUMO
Aims: The aim was to describe an innovative initiative that took place in a pediatric rehabilitation hospital. The goal of this organization-wide strategic initiative, called the Transition Strategy, was to improve service delivery to children/youth with disabilities and their families at times of life transition. The research question was: What are the key elements that have contributed to the success of the Strategy, from the perspective of team members? The objectives were to describe: (a) the guiding principles underlying team functioning and team practices, (b) key enablers of positive team functioning, (c) the nature of effective team practices, and (d) lessons learned. Methods: A holistic descriptive case study was conducted, utilizing historical documents, tracked outcome data, and the experiences and insights of multidisciplinary team members (the authors). Reflecting an insiders' perspective, the impressions of team members were key sources of data. The perspectives of team members were used to generate key teamwork principles, enablers of team functioning, team practices, and key learnings. Findings and Discussion: Team members identified four guiding humanistic principles (respect, support, partnership, and open communication). These principles underpinned three novel practices that contributed to team effectiveness in the eyes of team members: supportive relational practices, human-centered co-design, and solution-focused communication. Key enablers were the relational style of leadership, and a team climate of innovation, autonomy, and trust, supported by the organizational vision. This team climate fostered a sense of psychological safety, thereby encouraging both experimentation and learning from failure. Conclusions: This article provides information for other healthcare organizations interested in understanding the Strategy's value and its implementation. It provides a practical example of how to adopt a humanistic approach to health care, leading to both innovative service development and thriving among team members.