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PURPOSE: The objective of this synthesis research was to explore representations of autism and human-animal interactions (HAI) in the health sciences literature and the implications for autistic children and their families. METHODS: Guided by critical interpretive synthesis methods proposed by Dixon-Woods et al. (2006), we synthesized and examined how autism and HAI were described in the health sciences literature and explored assumptions and goals underlying HAI as an intervention. RESULTS: Across 47 reviewed articles, animals were represented as therapeutic objects whose purpose from a biomedical perspective was to address "problematic" behaviours and "deficits" in social functioning and development. HAI was employed as a therapy to address improvements in these problematic behaviours in the majority of studies. Relational and social aspects of HAI were present but not explicitly discussed. An alternative perspective proposed by Olga Solomon positioned autistic sociality as one form of diverse human socialities that can be embraced, rather than held problematic and in need of being normalized. CONCLUSIONS: Implications for HAI in rehabilitation include recognizing the multiple purposes of animals in a child's life, not only the therapeutic goal of normalizing functioning.
Animals can be considered agents that engage with humans and have multiple purposes in the lives of autistic children. Recognizing and valuing the types of relationships formed between children and animals as agents, each with social standing opens new areas of research and healthcare that can be explored.Future research can challenge medical autism discourses toward different ways of understanding social functioning as sociality.Rehabilitation can promote the rich experience that autistic children have with animals as valuable and beneficial in its own right, and not only for the therapeutic goal of normalizing social functioning.
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BACKGROUND: Many taken-for-granted expectations for parents in Western societies are situated in normative assumptions. Social constructions of 'good' parenting may be a poor fit for parents whose children's development varies from a so-called typical trajectory. Normative assumptions about parenting can have harmful effects for parents of autistic children. AIMS/OBJECTIVES: This paper examines representations of parenting autistic children in contemporary research and considers the potential effects of these representations on these parents' occupational possibilities. METHODS: Informed by a critical occupational perspective, a critical interpretive synthesis (CIS) of 27 research articles focussed on parenting autistic children was conducted. FINDINGS: Three major discursive threads were identified regarding how parents of autistic children are represented in research: gendered assumptions, caregiving as all-consuming, and disruption of normative expectations of parenting. CONCLUSIONS AND SIGNIFICANCE: Normative discourses about parenting were (re)produced within this body of research which may perpetuate limitations in the occupational possibilities of parents of autistic children. Critical investigation into contemporary research is necessary to challenge taken for granted expectations for parents of children with autism, to mitigate harmful effects for parents, to inform transformative OT practices and policies, and to promote equitable service provision.
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Trastorno Autístico , Responsabilidad Parental , Humanos , Niño , Padres , Encuestas y CuestionariosRESUMEN
BACKGROUND: High quality communication is central to effective primary care. The COVID-19 pandemic led to a dramatic increase in virtual care but little is known about how this may affect communication quality. Adults with intellectual and developmental disabilities (IDD) can experience challenges communicating or communicate in non-traditional ways. This study explored how the use of virtual modalities, including telephone and video, affects communication in primary care interactions for patients with IDD. METHODS: This qualitative descriptive study included semi-structured interviews with a multi-stakeholder sample of 38 participants, including 11 adults with IDD, 13 family caregivers, 5 IDD support staff and 9 primary care physicians. Interviews were conducted in Ontario, Canada between March and November 2021 by video-conference or telephone. A mixed inductive and deductive thematic analysis approach was used to code the data and identify themes. Themes were reviewed and refined with members of each stakeholder group. RESULTS: Four elements of communication were identified that were affected by virtual care: (1) patient engagement in the virtual appointment; (2) the ability to hear other participants and have the time and space to be heard; (3) the ability to use nonverbal communication strategies; and (4) the ability to form trusting relationships. In some cases, the virtual platform hindered these elements of communication. Video offered some advantages over telephone to support nonverbal communication, and stimulate engagement; though this could be limited by technical challenges. For adults with IDD who find it difficult to attend in-person appointments, virtual care improved communication quality by allowing them to participate from a space where they were comfortable. CONCLUSION: Though there are circumstances in which virtual delivery can improve communication for patients with IDD, there are also challenges to achieving high quality patient-provider communication over telephone and video. Improved infrastructure and training for providers, patients and caregivers can help improve communication quality, though in some cases it may never be appropriate. A flexible patient-centred approach is needed that includes in-person, telephone and video options for care.
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COVID-19 , Discapacidades del Desarrollo , Adulto , Niño , Humanos , Discapacidades del Desarrollo/terapia , Pandemias , Ontario , Comunicación , Atención Primaria de SaludRESUMEN
BACKGROUND: Autism is not always considered for girls and women until later along their clinical diagnostic pathways. Misdiagnosis or late diagnosis can pose significant disadvantages with respect to accessing timely health and autism-related services and supports. Understanding what contributes to roadblocks and detours along clinical pathways to an autism diagnosis can shed light on missed opportunities for earlier recognition. OBJECTIVE: Our objective was to examine what contributed to roadblocks, detours, and missed opportunities for earlier recognition and clinical diagnosis of autism for girls and women. DESIGN: We conducted a qualitative secondary analysis using data from a Canadian primary study that examined the health and healthcare experiences of autistic girls and women through interviews and focus groups. METHODS: Transcript data of 22 girls and women clinically diagnosed with autism and 15 parents were analysed, drawing on reflexive thematic analysis procedures. Techniques included coding data both inductively based on descriptions of roadblocks and detours and deductively based on conceptualizations of sex and gender. Patterns of ideas were categorized into themes and the 'story' of each theme was refined through writing and discussing analytic memos, reflecting on sex and gender assumptions, and creating a visual map of clinical pathways. RESULTS: Contributing factors to roadblocks, detours, and missed opportunities for earlier recognition and diagnosis were categorized as follows: (1) age of pre-diagnosis 'red flags' and 'signals'; (2) 'non-autism' mental health diagnoses first; (3) narrow understandings of autism based on male stereotypes; and (4) unavailable and unaffordable diagnostic services. CONCLUSION: Professionals providing developmental, mental health, educational, and/or employment supports can be more attuned to nuanced autism presentations. Research in collaboration with autistic girls and women and their childhood caregivers can help to identify examples of nuanced autistic features and how context plays a role in how these are experienced and navigated.
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Trastorno Autístico , Humanos , Masculino , Femenino , Niño , Trastorno Autístico/diagnóstico , Canadá , Padres , Atención a la Salud , Salud MentalRESUMEN
PURPOSE: Rehabilitation research on wellness promotion for children and youth with disabilities is limited and tends to narrowly focus on physical aspects of health. An overarching sense of wellness includes multiple, overlapping dimensions (e.g., physical, social, emotional, occupational). This study's main objectives were to explore what wellness means for young people with disabilities, and what contributes to their sense of wellness. METHODS: A qualitative design involving World Café-style focus groups was used to explore the perspectives of youth with disabilities (14-25 years old, n = 3), parents (n = 6) and healthcare providers (n = 10) on how wellness is understood and addressed at a Canadian children's rehabilitation hospital. Themes were identified through an inductive analysis of focus group transcripts and notes written by participants and research team members. RESULTS: Having a variety of relationships and social connections, meaningful activity opportunities, becoming as independent as possible, and having stable medical health contributed to wellness for young people with disabilities. CONCLUSIONS: Rehabilitation care can promote wellness by co-creating personalized care pathways across multiple wellness dimensions with young people with disabilities and their families, focusing on strengths rather than deficits, and improving access to a variety of activities and communities.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals in children's rehabilitation have unique, ongoing opportunities to promote and support wellness with young people with disabilities and their families.Rehabilitation professionals can embed personalized, strengths-focused wellness pathways across multiple dimensions into the care of children with disabilities.Helping children and families address barriers to meaningful activities and promoting social connections can foster an overarching sense of wellness.
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Personas con Discapacidad , Adolescente , Humanos , Niño , Adulto Joven , Adulto , Canadá , Personas con Discapacidad/rehabilitación , Promoción de la Salud , Grupos Focales , EmocionesRESUMEN
BACKGROUND: The COVID-19 pandemic has led to an unprecedented increase in the delivery of virtual primary care. Adults with intellectual and developmental disabilities (IDDs) have complex health care needs, and little is known about the value and appropriateness of virtual care for this patient population. OBJECTIVE: The aim of this study was to explore the accessibility of virtual primary care for patients with IDDs during the pandemic. METHODS: We conducted semistructured interviews with 38 participants in Ontario, Canada between March and November 2021. A maximum variation sampling strategy was used to achieve a diverse sample including 11 adults with IDDs, 13 family caregivers, 5 IDD support staff members, and 9 primary care physicians. An iterative mixed inductive and deductive thematic analysis approach was used to code the data and synthesize higher-level themes. The analysis was informed by the Levesque Patient-Centered Access to Health Care Framework. RESULTS: We identified themes related to 4 of 5 access-to-care dimensions that highlighted both the benefits and challenges of virtual care for adults with IDDs. The benefits included saving time spent traveling and waiting; avoiding anxiety and challenging behavior for patients who struggle to attend in-person visits; allowing caregivers who live far away from their loved ones to participate; reducing illness transmission; and allowing health care providers to see patients in their home environments. The challenges included lack of access to necessary technology, lack of comfort or skill using technology, and lack of nonverbal communication; difficulty engaging and establishing rapport; patient exclusion from the health care encounter; and concerns about privacy and confidentiality. An overarching theme was that "one size does not fit all," and the accessibility of virtual care was dependent on the interaction between the following 5 categories of factors: patient characteristics, patient context, caregiver characteristics, service context, and reason for a particular primary care visit. Though virtual care was not always appropriate, in some cases, it dramatically improved patients' abilities to access necessary health care. CONCLUSIONS: This study suggests that a flexible patient-centered system including multiple delivery modalities is needed to ensure all patients have access to primary care. Implementing this system will require improved virtual care platforms, access to technology for patients and caregivers, training for primary care providers, and appropriately aligned primary care funding models.
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BACKGROUND: Parents of children with disabilities often report stress, depression, and anxiety. This review identified screening tools and practices that pediatric rehabilitation service providers can use to screen the mental health of parents of children with disabilities. METHODS: An interdisciplinary team and patient partner completed the systematic review in which 16,015 articles were screened and 473 articles were included to i) identify mental health tools that were used with parents, ii) determine the clinical utility of frequently used tools, iii) examine the screening practices used in pediatric rehabilitation contexts. RESULTS: 115 screening tools were used to screen parents' mental health. The Parenting Stress Index was used most often. Seven studies reported screening in order to recommend further assessment or supports. Increased awareness, training, resources, and infrastructure are needed to support parents' mental health. DISCUSSION: Evidence is needed to guide mental health screening practices in pediatric rehabilitation and determine their effectiveness.
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Tamizaje Masivo , Trastornos Mentales , Padres , Niño , Servicios de Salud del Niño , Niños con Discapacidad/rehabilitación , Humanos , Tamizaje Masivo/instrumentación , Tamizaje Masivo/métodos , Trastornos Mentales/diagnóstico , Padres/psicologíaRESUMEN
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.
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BACKGROUND: The COVID-19 pandemic led to an abrupt shift to virtual health care for many patients, including adults with intellectual and developmental disabilities (IDD). Approaches to virtual care that are successful for people without IDD may need to be adapted for adults with IDD. OBJECTIVE: The aim of this scoping review was to examine what is known about virtual health care for adults with IDD and in particular, the impact of virtual delivery on access to care for this population. METHODS: A comprehensive search was conducted of the academic and grey literature. A two-stage screening process was conducted by two independent reviewers and a structured data extraction template was populated for each included study. Findings were analyzed thematically using Access to Care Framework domains. RESULTS: In total, 22 studies met inclusion criteria. The majority were published in the past three years and focused on specialized IDD services. A subset of 12 studies reported findings on access to care for adults with IDD. Participants generally reported high acceptability of virtual care, though some preferred face-to-face encounters. Initial results on effectiveness were positive, though limited by small sample sizes. Challenges included internet quality and technical skill or comfort. CONCLUSIONS: This review suggests that it is possible to deliver accessible, high quality virtual care for adults with IDD, however, relatively little research has been conducted on this topic. Due to COVID-19 there is currently a unique opportunity and urgency to learn when and for whom virtual care can be successful and how it can be supported.
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COVID-19 , Personas con Discapacidad , Discapacidad Intelectual , Adulto , Niño , Atención a la Salud , Discapacidades del Desarrollo , Humanos , Pandemias , SARS-CoV-2RESUMEN
BACKGROUND: Workers supporting adults with intellectual disabilities experience significant stress in their essential role during COVID-19. The purpose of this study was to describe the experience of these workers and determine predictors of emotional distress. METHODS: Eight hundred and thirty-eight workers supporting adults with intellectual disabilities completed an online survey about their work during COVID-19 and their mental health in July 2020. RESULTS: One in four workers reported moderate to severe emotional distress. Being older and more experienced, having counselling services available through one's agency, and engaging in regular exercise or hobbies outside work were associated with less distress. Workers who reported increased stress in the workplace, stigma towards their families because of their job, personal fears about spreading COVID-19, and receipt of medications for mental health conditions or therapy reported greater distress. CONCLUSIONS: More attention is needed to address the mental health of workers supporting adults with intellectual disabilities as they continue their essential work during the pandemic.
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COVID-19 , Discapacidad Intelectual , Adulto , Humanos , Discapacidad Intelectual/epidemiología , Salud Mental , Pandemias , SARS-CoV-2RESUMEN
Background: The idea that everyone should strive to be a 'productive citizen' is a dominant societal discourse. However, critiques highlight that common definitions of productive citizenship focus on forms of participation and contribution that many people experiencing disability find difficult or impossible to realize, resulting in marginalization. Since rehabilitation services strive for enablement, social participation, and inclusiveness, it is important to question whether these things are achieved within the realities of practice. Our aim was to do this by examining specific examples of how 'productive citizenship' appears in rehabilitation services.Methods: This article draws examples from three research studies in two countries to highlight instances in which narrow understandings of productive citizenship employed in rehabilitation services can have unintended marginalizing effects. Each example is presented as a vignette.Discussion: The vignettes help us reflect on marginalization at the level of individual, community and society that arises from narrow interpretations of 'productive citizenship' in rehabilitation services. They also provide clues as to how productive citizenship could be envisaged differently. We argue that rehabilitation services, because of their influence at critical junctures in peoples' lives, could be an effective site of social change regarding how productive citizenship is understood in wider society.Implications for rehabilitation'Productive citizenship', or the interpretation of which activities count as contributions to society, has a very restrictive definition within rehabilitation services.This restrictive definition is reflected in both policy and practices, and influences what counts as 'legitimate' rehabilitation and support, marginalizing options for a 'good life' that fall outside of it.Rehabilitation can be a site for social change; one way forward involves advocating for broader understandings of what counts as 'productive citizenship'.
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Personas con Discapacidad , Participación Social , HumanosRESUMEN
BACKGROUND: Research to date with children and youth with intellectual and developmental disabilities (IDD) has previously focused upon specific aspects of health (e.g., physical activity, nutrition). A broader focus on 'wellness' takes a positive approach to health by addressing how individuals can lead meaningful lives by focusing on their unique strengths and resources across multiple wellness dimensions, rather than focusing on deficits. OBJECTIVE: This study, conducted in partnership with Special Olympics (SO), aimed to understand the state of perceived wellness and wellness-promoting behaviours of children and youth with IDD from multi-stakeholder perspectives (i.e., SO athletes, caregivers, and coaches). METHODS: A cross-sectional Likert survey methodology was employed to generate data on the perceptions of multiple stakeholders on different wellness dimensions identified through a literature review and consultations with SO stakeholders. RESULTS: Athletes, caregivers and coaches generally agreed rather than disagreed with wellness statements, with the exception of coaches' responses regarding healthy nutrition. Athletes agreed more than caregivers and coaches that they engaged in some wellness promoting behaviours (i.e., calming oneself down, participating in their communities). Athletes and coaches were more likely to agree than caregivers about athletes' positive outlook. CONCLUSION: Athletes' perceptions of their own wellness are unique from those of caregivers and coaches. Focusing on wellness can broaden understandings of how to support young people with IDD by drawing on their strengths and resources to foster optimal health and a sense of wellness in ways that are meaningful and relevant to them.
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Atletas/psicología , Personas con Discapacidad/psicología , Emociones , Estado de Salud , Salud Mental , Autoimagen , Deportes/psicología , Adaptación Psicológica , Adolescente , Adulto , Atención , Niño , Estudios Transversales , Femenino , Conductas Relacionadas con la Salud , Promoción de la Salud , Humanos , Masculino , Investigación , Participación de los Interesados , Adulto JovenAsunto(s)
Personas con Discapacidad/psicología , Defensa del Paciente , Atención Primaria de Salud/métodos , Relaciones Profesional-Paciente , Adulto , Canadá , Discapacidades del Desarrollo/psicología , Discapacidades del Desarrollo/terapia , Femenino , Equidad en Salud , Humanos , Discapacidad Intelectual/psicología , Discapacidad Intelectual/terapia , MasculinoRESUMEN
OBJECTIVE: To demonstrate how family physicians can contribute to a piece of the journey of improving quality-of-life outcomes for people with intellectual and developmental disabilities (IDD) when they undergo the transition from adolescence to adulthood. SOURCES OF INFORMATION: The "Primary care of adults with intellectual and developmental disabilities. 2018 Canadian consensus guidelines" literature review and interdisciplinary input. MAIN MESSAGE: Family physicians should be proactive in anticipating and supporting the transition of people with IDD from adolescence to adulthood. Interventions should be guided by a developmental perspective regarding the person with IDD and a life-cycle approach to supporting families. Family physicians also have a role in helping people with IDD and their families to navigate successfully through changing community-based support systems in their province, especially health care and social services systems. Therefore, family physicians should be aware of current services available in their regions. CONCLUSION: Community and team-based family physicians can optimize the quality of life of people with IDD and their families by adopting a proactive developmental and systems approach to preparing youth with IDD for adulthood. In doing so, they exemplify the 4 principles of family medicine.
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Discapacidades del Desarrollo/terapia , Discapacidad Intelectual/terapia , Atención Primaria de Salud/métodos , Transición a la Atención de Adultos/normas , Adolescente , Adulto , Canadá , Niño , Personas con Discapacidad , Femenino , Humanos , Relaciones Médico-Paciente , Guías de Práctica Clínica como Asunto , Adulto JovenRESUMEN
Rehabilitation research investigating activity participation has been largely conducted in a realist tradition that under-theorises the relationship between persons, technologies, and socio-material places. In this Canadian study we used a post-critical approach to explore activity/setting participation with 19 young people aged 14 to 23 years with complex communication and/or mobility impairments. Methods included integrated photo-elicitation, interviews, and participant observations of community-based activities. We present our results using the conceptual lens of assemblages to surface how different combinations of bodies, social meanings, and technologies enabled or constrained particular activities. Assemblages were analysed in terms of how they organised what was possible and practical for participants and their families in different contexts. The results illuminate how young people negotiated activity needs and desires in particular 'spacings' each with its own material, temporal, and social constraints and affordances. The focus on assemblages provides a dynamic analysis of how dis/abilities are enacted in and across geotemporal spaces, and avoids a reductive focus on evaluating the accessibility of static environmental features. In doing so the study reveals possible 'lines of flight' for healthcare, rehabilitation, and social care practices.
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Trastornos de la Comunicación/psicología , Trastornos de la Comunicación/rehabilitación , Personas con Discapacidad/psicología , Personas con Discapacidad/rehabilitación , Limitación de la Movilidad , Participación Social/psicología , Adolescente , Canadá , Equipos de Comunicación para Personas con Discapacidad , Femenino , Humanos , Masculino , Sociología , Adulto JovenRESUMEN
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).
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Lesiones Encefálicas/rehabilitación , Factores Sexuales , Transición a la Atención de Adultos , Comunicación , Familia , Femenino , Humanos , Masculino , Ontario , Investigación Cualitativa , Apoyo Social , Adulto JovenRESUMEN
BACKGROUND: Client-centred occupational therapy practice is tacitly guided by prevailing social values and beliefs about what are "normal" occupational possibilities. These values and beliefs privilege some occupations and negate others. AIM: This study aims to identify and problematize assumptions regarding the value of approximating normal occupational possibilities, showing how these assumptions influence and may diminish client-centred practice. METHODS: Using empirical research examples it demonstrates how occupational therapists and clients are immersed in contexts that shape values and beliefs about what are considered "normal" occupations and how these taken-for-granted values structure occupational therapy practice. CONCLUSION: Critique of client-centred practice requires conscious reflexivity, interrogating our own and our clients' predispositions to value some occupations over others. Engaging in critical reflexivity can help therapists develop new perspectives of how client-centred practice can be applied that includes enabling possibilities for occupations that would be missed altogether in the pursuit of "normal'.
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Personas con Discapacidad/rehabilitación , Terapia Ocupacional , Ocupaciones , Atención Dirigida al Paciente/métodos , Valores Sociales , Humanos , Práctica Profesional , Investigación CualitativaRESUMEN
PURPOSE: Youth with progressive conditions are living longer, and there is increased health care focus on assisting them with "transitioning" to adult services and adult life. The purpose of this investigation was to examine key discourses and normative assumptions underpinning transitions best practices and how they are reflected in the experiences of young men with Duchenne muscular dystrophy (DMD). METHODS: Using a critical perspective, we qualitatively analyzed influential transitions best practice documents to identify their underpinning discursive assumptions. We compared these to the analysis of qualitative interviews and diary data from a study of 11 young men with DMD. RESULTS: Transitions best practices are underpinned by discourses of developmental progression. They reproduce notions that associate successful transitions with becoming as independent as possible, approximating normal life trajectories, and planning for future adulthood. The accounts of youth with DMD both reflected and resisted these future-oriented discourses in creative ways that maintained positive personal identities. CONCLUSIONS: Normal developmental progression towards typical adult roles constitutes the generally accepted aims of transitions practices. Such aims may not be appropriate for all youth with disabilities. We suggest that alternative understandings of the life course and approaches to care need to be considered alongside dominant practices. Implications for Rehabilitation Children and youth with progressive conditions, such as DMD, are living longer and there is increased interest in designing programs that will assist them with "transitioning" to adulthood. Transitions best practices reflect dominant social values and assumptions about what constitutes a successful adulthood, embedded in goals such as independent living, self-management and obtaining work. Rehabilitation professionals should be aware of both positive (e.g. feelings of achievement) and negative (e.g. anxiety about the future) consequences of transitions practices that emphasize normal social developmental trajectories and milestones. Discussions with youth should offer multiple possibilities for living a good life in the present and provide support to address negative feelings and the progressive effects of DMD.
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Envejecimiento , Personas con Discapacidad/psicología , Distrofia Muscular de Duchenne/rehabilitación , Transición a la Atención de Adultos , Adolescente , Adulto , Progresión de la Enfermedad , Humanos , Entrevistas como Asunto , Acontecimientos que Cambian la Vida , Masculino , Guías de Práctica Clínica como Asunto , Autocuidado , Adulto JovenRESUMEN
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.