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Paediatric acquired brain injury (ABI) can adversely impact families, and it is widely accepted that families should be involved in the rehabilitation of children/adolescents with ABI. However, there is limited guidance about how to best involve families in paediatric ABI rehabilitation. Several programmes involving the families of children/adolescents with ABI have been developed, but there are no published reviews outlining their characteristics. This scoping literature review aimed to synthesize information about these programmes and develop an understanding of how families are involved in them. Four databases were systematically searched to identify sources of evidence that described programmes in paediatric ABI rehabilitation that involve family members. One hundred and eight sources of evidence describing 42 programmes were included. Programmes were categorized as: service coordination (n = 11), psychosocial (n = 17), support groups (n = 4), training/instruction (n = 9), and education (n = 1). Families' involvement in these programmes varied across programme development, delivery, and evaluation stages. The findings of this scoping literature review outline how families can be involved in paediatric ABI rehabilitation. While this review outlines many approaches to supporting families, it also highlights the need for models of family-centred care to better articulate how clinicians and services can involve families in paediatric ABI rehabilitation.
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This study explored the experiences of goal setting in paediatric rehabilitation from the perspectives of children and adolescents with acquired brain injury (ABI) and their parents in paediatric rehabilitation. Using a qualitative research design, 15 semi-structured interviews were conducted with 13 parents and 8 young people with ABI aged between 9 and 18 years who were engaged in outpatient rehabilitation. Interview transcripts were analysed using constructivist grounded theory methods. Two main themes and several sub-themes emerged: Experiences of goal setting: The role of professionals; The role of the young person; and The role of the parents. Working as a team: Understanding each other and building trust; Communicating, sharing knowledge and different perspectives; and Being flexible. These themes reflect parent's and young people's experience of goal setting during paediatric rehabilitation for ABI and suggest clinicians play an important role in educating young people and their families about goal setting in the outpatient rehabilitation context. Young people and their parents also perceive the focus of outpatient rehabilitation as working collaboratively with clinicians to gain knowledge to manage the consequences of ABI. Our findings emphasize the importance of the therapeutic consumer-clinician relationship and the need to actively engage young people in goal setting.
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Lesões Encefálicas , Objetivos , Humanos , Criança , Adolescente , Pais , Pesquisa Qualitativa , Lesões Encefálicas/reabilitaçãoRESUMO
To understand the systems underlying current rehabilitation models of care used with children and youth (0-21years) who sustain traumatic brain and/or spinal cord injuries. This study gathered qualitative data on service structures, service organization, and the barriers and facilitators of service provision in selected medical rehabilitation service(s) (MRS) and community-based rehabilitation service(s) (CBRS). Informants from 11 rehabilitation services were interviewed using a semi-structured interview guide. Interviews were analysed in NVivo using content analysis method. Experiences shared by the service representatives indicated that most services supported children and youth with brain injury, with a limited number also specializing in spinal cord injuries. MRS often delivered care in inpatient or outpatient settings, while CBRS offered home/community-based services. Care planning often started either prior to or shortly after admission from acute care settings, using either multidisciplinary or interdisciplinary teamwork models. Strengths of the services included innovation and provision of family-centred care; while challenges experienced included difficulty translating evidence into practice and poor team communication. Models of care were similar across services, with a focus on providing family-centred care. Several shared challenges were described, and service representatives expressed interest in forming partnerships and collaborations to address these challenges through innovative initiatives.
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Lesões Encefálicas Traumáticas , Lesões Encefálicas , Traumatismos da Medula Espinal , Humanos , Criança , Adolescente , Traumatismos da Medula Espinal/reabilitação , Pacientes Internados , Encéfalo , Lesões Encefálicas Traumáticas/reabilitaçãoRESUMO
This paper explored clinicians' experiences of the goal setting process with children and adolescents with acquired brain injuries (ABI) and their families in paediatric neurorehabilitation. Semi-structured interviews were conducted with 13 clinicians, all members of an interdisciplinary paediatric rehabilitation service, who work with children and adolescents with ABI and their families. Interview transcripts and additional data were analysed using constructivist grounded theory methods. Three main themes and sub-themes were developed: (1) Seeing the bigger picture: Goals change over time; Families set bigger picture goals; Need-to-dos: Goals that the child/adolescent needs to achieve; and Want-to-dos: Goals that the child/adolescent wants to achieve; (2) Collaborating as a team: Everyone needs to be on the same page; Hearing the child's/adolescent's voice; and Parents as advocates; and (3) Recognizing and navigating challenges: Child-/adolescent- and family-related challenges and Time as a service-related challenge. Participants perceived the clinician's role during goal setting as that of an active collaborator, enabling children and adolescents with ABI and their families to generate meaningful goals. These findings demonstrate insights into goal setting in paediatric ABI neurorehabilitation from clinicians' perspectives, and highlight the importance of collaboration, flexibility and anticipation of challenges in facilitating children's, adolescents' and families' involvement in this process.
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Lesões Encefálicas , Objetivos , Adolescente , Criança , Família , Humanos , PaisRESUMO
To describe current rehabilitation models of care and programmes, in Australia and internationally, related to family-centred care, psychosocial support, and transitions used for children and youth who have sustained major traumatic brain and/or spinal cord injuries. Fourteen services were interviewed, including eight medical rehabilitation services, three community-based rehabilitation services, two insurance services, and one state-wide education service provider. Semi-structured interviews were transcribed and analysed using qualitative content analysis in NVivo. Compared to the number of services supporting children and youth with traumatic brain injury, a very limited number supported those with spinal cord injury. Although valued and often included in the model of care, family-centred care was rarely systematically evaluated by the services. Most services provided psychosocial and transition support to children and youth, and their families in the short-term post-injury, but not in the long-term. Several challenges also hindered the smooth delivery of these support services, including poor communication between service providers. These findings show that services aimed to provide the best possible care to these children and youth, and their families; guided by rehabilitation models of care. However, challenges persist with regards to delivering family-centred care, coordinating return to school, and providing long-term support for psychosocial problems and transition.
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Lesões Encefálicas Traumáticas , Reabilitação Psiquiátrica , Traumatismos da Medula Espinal , Adolescente , Austrália , Encéfalo , Criança , Humanos , Traumatismos da Medula Espinal/reabilitaçãoRESUMO
INTRODUCTION: Education seeks to empower clients to attain and maintain knowledge and skills, and in the context of occupational therapy, to enable occupational participation. While education is routinely provided in the inpatient hospital setting, little is known about how education is best adapted to meet the needs of clients with cognitive impairment. The purpose of this scoping review was to determine what is currently known about approaches to educating adults with cognitive impairment in the inpatient hospital setting. METHODS: Five databases were systematically searched to find studies that reported on the use of education in the inpatient hospital setting with adults with cognitive impairment. RESULTS: Ten articles were retrieved from the search with duplication of authors across the articles, indicating a small group of research and researchers. Cognitive impairment was not well assessed across all the studies and none included participants with severe cognitive impairment. A number of barriers to education were identified, including time constraints, uncertainty around who should be providing education, a shortage of resources, and client-related barriers such as cognitive deficits. From the retrieved studies it was found that education should occur at multiple time points, be individually tailored, and utilise mixed modal approaches such as verbal and written methods. There was also a preference for less use of jargon, and engagement with carers and clients where possible. CONCLUSION: This scoping review highlights factors impacting the provision of education tailored to the needs of clients with cognitive impairment in the inpatient setting. The findings also call to attention the need for better assessment of cognition to guide provision of tailored education, as well as future studies exploring how to best educate clients with not only mild/moderate cognitive impairment but also more severe impairments.
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Disfunção Cognitiva/epidemiologia , Pacientes Internados , Terapia Ocupacional/organização & administração , Educação de Pacientes como Assunto/organização & administração , Escolaridade , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Preferência do Paciente , Índice de Gravidade de Doença , Fatores SocioeconômicosRESUMO
As part of a larger study exploring narrative storytelling, this paper focuses upon the experiences of eight adults with ABI who had participated in storytelling workshops facilitated by an advocacy organization. Following participation in the storytelling workshops, each storyteller was interviewed twice, with three shorter interviews conducted with one participant with significant communication challenges. In total, 25 interview transcripts (17 interviews plus eight transcripts of produced personal narratives) were analysed using constructivist grounded theory methods. Data analysis produced two main themes and sub-themes; (1) Sharing and helping (feeling heard & releasing emotions) and, (2) Re-visiting my story (reflecting and learning). The themes capture insights into the process of storytelling and reveal the therapeutic potential of narrative storytelling when coupled with an altruistic opportunity to help others through story sharing. This study contributes to an emerging area of research and practice supporting positive identity growth following ABI. The findings present substantial implications for goal setting and meaningful productive engagement in brain injury rehabilitation.
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Lesões Encefálicas Traumáticas/psicologia , Lesões Encefálicas Traumáticas/reabilitação , Narração , Terapia Narrativa , Crescimento Psicológico Pós-Traumático , Processos Psicoterapêuticos , Adulto , Altruísmo , Humanos , Defesa do Paciente , Pesquisa QualitativaRESUMO
Although narrative storytelling has been found to assist identity construction, there is little direct research regarding its application in rehabilitation following traumatic brain injury (TBI). The aim of this review was to identify published evidence on the use of personal narrative approaches in rehabilitation following TBI and to synthesise the findings across this literature. A systematic search of four databases was conducted in December 2016. No limit was set on the start date of the search. Personal narrative approaches were defined as direct client participation in sharing personal stories using written, spoken or visual methods. The search retrieved 12 qualitative research articles on the use of personal narrative approaches in TBI rehabilitation. Thematic synthesis of the narrative data and authors' reported findings of the 12 articles yielded an overall theme of building a strengths-based identity and four sub-themes: 1) expressing and communicating to others; 2) feeling validated by the act of someone listening; 3) reflecting and learning about oneself; and 4) being productive. The findings of this review support the use of personal narrative approaches in addressing loss of identity following TBI. Healthcare professionals and the community are encouraged to seek opportunities for survivors of TBI to share their stories.
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Lesões Encefálicas Traumáticas/psicologia , Lesões Encefálicas Traumáticas/reabilitação , Narração , Narrativas Pessoais como Assunto , Pesquisa Qualitativa , Humanos , AutoimagemRESUMO
PURPOSE: Traumatic upper limb amputation (ULA) is a profound injury impacting participation in activities of daily living, including those within the community setting. The objective of this work was to review literature exploring barriers, facilitators, and experiences of community reintegration in adults following traumatic ULA. METHODS: Databases were searched using terms synonymous with the amputee population and community participation. Study methodology and reporting were evaluated using McMaster Critical Review Forms, with a convergent segregated approach to synthesis and configuration of the evidence. RESULTS: A total of 21 studies met the inclusion criteria, including quantitative, qualitative and mixed-method study designs. Restoring function and cosmesis with prostheses facilitated work participation, driving and socialisation. Positive work participation was predicted by male gender, younger age, medium-high education level and good general health. Work role and environmental modifications were common, as were vehicle modifications. Qualitative findings provided insight into social reintegration from a psychosocial perspective, particularly negotiating social situations, adjusting to ULA and re-establishing identity. The review findings are limited by the absence of valid outcome measures and clinical heterogeneity across the studies. CONCLUSION: There is a dearth of literature on community reintegration following traumatic upper limb amputation, indicating a need for further research with strong methodological rigour.Implications for RehabilitationUpper limb amputation can restrict participation in activities in the community including work, socialisation, driving, leisure, and recreation.Clinicians can support community reintegration by addressing personal and environmental factors that both facilitate or inhibit participation in community activities.Prosthetics can be a facilitator for participation in community activities through the restoration of function and cosmesis.Clinicians can facilitate return to work through work modification recommendations or supported transitions to more suitable roles.
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Atividades Cotidianas , Amputação Traumática , Adulto , Humanos , Masculino , Atividades de Lazer , Amputação Traumática/cirurgia , Amputação Cirúrgica , Extremidade Superior/cirurgiaRESUMO
Background People with Multiple Sclerosis (MS) have unique housing and support needs that are essential for maintaining independence at home; however, there is limited research to guide the design of community living options for this population. The aim of this study was to examine housing and support needs and preferences of people with MS with the intention to inform the planning of a co-designed intervention based on the study's findings. Methods Using the Knowledge to Action (KTA) framework, quantitative (n =79) and qualitative (n =6) data from people with MS were extracted and integrated from projects completed by the research team that explored the housing and support needs and preferences of people with disability. Results were synthesised and presented to a reference group for validation, contextualisation, and adaptation to the Australian context. Results High physical support needs were common across participants. People most commonly required home modifications to improve accessibility, such as ramps, equipment such as heating and cooling, and assistive technology. Many people required more than 8 hours per day of paid support. Moving into individualised housing facilitated independence and community reintegration. People reported gaps between what they wanted from support workers and what they received, citing individual and systemic barriers. Conclusion People with MS have support needs that require proactive and responsive funding arrangements, housing design and support provision. In line with KTA principles, findings will inform the planning of a co-designed intervention that involves people with lived experience of MS and other stakeholders to influence policy and improve home and living outcomes for this population.
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Habitação , Esclerose Múltipla , Humanos , Esclerose Múltipla/terapia , Esclerose Múltipla/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Austrália , Pessoas com Deficiência/psicologia , Pessoas com Deficiência/reabilitação , Vida Independente , Idoso , Apoio SocialRESUMO
PURPOSE: To explore barriers and facilitators to social and community participation experienced by people following traumatic lower limb amputation (LLA). METHODS: An exploratory qualitative study was conducted with nine adults with traumatic LLA in Victoria, Australia. Participants were a minimum of 18 months post amputation. Interview data was analysed using thematic analysis. RESULTS: Participants referenced the inaccessibility of the built environment and physical challenges associated with prosthetic mobility as barriers to participation. Chronic and complex health concerns due to their injuries resulted in physical and emotional distress for some, further limiting their social and community engagement. Participants highlighted the benefit of peer-support networks and the value of supportive community groups in assisting the transition to their pre-amputation family, work and social roles. Participants also felt that a strong, positive attitude and being self-motivated were important to aid in their return to social and community participation. CONCLUSION: People following traumatic LLA experience a number of physical, psychological and environmental challenges to participation. The role of peer-support networks, community groups and personal attitudes are important facilitators to assist a return to family, work and life roles. The findings of this study have informed the development of recommendations to guide clinical practice.IMPLICATIONS FOR REHABILITATIONPeer-support groups for people following traumatic lower limb amputation (LLA) may assist to improve their long-term adjustment to disability and community participationRetraining skills in an individual's own community should be considered when planning community-based therapy services for people following traumatic LLA.Ongoing psychosocial support including strategies to develop self-efficacy and positive mindset may improve social and community participationRegular medical and allied health reviews can be beneficial to promote early intervention for any complications that arise to minimise time off prosthesis.
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Amputação Cirúrgica , Pessoas com Deficiência , Adulto , Humanos , Vitória , Extremidade Inferior/cirurgia , Participação da Comunidade , Participação Social/psicologiaRESUMO
PURPOSE: Storytelling interventions are increasingly being proposed as a tool for rehabilitation after Traumatic Brain Injury (TBI). This review aimed to systematically map intervention details as described in the TBI rehabilitation/recovery literature to better understand why, when and how storytelling is being used in rehabilitation. METHODS: The review team included a storyteller-performer with lived experience of severe TBI, and two academics. Literature searching followed a pre-defined protocol with systematic search strategies and inclusion/exclusion criteria developed through discussion and literature scoping. Included interventions described a deliberate process of creation and sharing of the story. FINDINGS: Thirteen studies met inclusion criteria, describing eleven distinct interventions fitting into four categories: film production, visual art, written publication and song composition. Rationale for the interventions included identity reconstruction, emotional processing, sense-making, and community (re)engagement. Varying levels of specialist materials and facilities were utilized. Most required facilitation by professionals trained in specialist areas such as narrative, art or music therapy. CONCLUSION: Intervention models suggest that storytelling is intended for self-identity reconstruction after TBI and that it can create socially acceptable ways to process difficult experiences and (re)connect with peers, clinicians, families, and communities. Larger-scale trials that test intervention efficacy in relation to documented outcomes are needed.IMPLICATIONS FOR REHABILITATIONStorytelling as part of traumatic brain injury rehabilitation is used to assist with self-identity reconstruction, emotional processing, and clinical issues such as communication and executive functioning.Categories of storytelling intervention include film, visual art, written work and song writing.Collaborative facilitation is key to this process for a traumatic brain injury population.
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Lesões Encefálicas Traumáticas , Humanos , Lesões Encefálicas Traumáticas/reabilitação , Comunicação , Função Executiva , Narração , Projetos de PesquisaRESUMO
PURPOSE: To assess the change in individual outcomes for people with disability and complex needs after moving into newly built, individualised apartments in the community. METHODS: People with disability (neurological disorder or cerebral palsy) and complex needs (n = 15, aged 18-65 years) completed quantitative self-report measures over two time-points (pre-move and 6-24 months post-move). Pre-move living arrangements included group homes, residential aged care, private rentals, and living with parents. Post-move living arrangements were individualised apartments built for people with disability. Health, wellbeing, community integration, and support needs were compared across pre- and post-move timepoints. RESULTS: Paired sample t-tests showed significant improvements consistent with large effects in wellbeing (p = 0.031, Eta2=0.29) and community integration (p = 0.008, Eta2=0.41), particularly home integration, and a trend towards improved health (p = 0.077, Eta2=0.21). A Wilcoxon signed rank test demonstrated a trend towards reduced support needs (z= -1.941, p = 0.052) consistent with a medium effect (r = 0.35) and an average decrease of 2.4 support hours per participant per day. CONCLUSIONS: Well-located housing with appropriate design, technology and support provision makes a positive contribution to wellbeing, community integration, and health for people with complex disability. Implications for rehabilitationPeople with disability who move into individualised apartments experience significant positive change in health, wellbeing, and participation.Findings highlight the benefits of housing that foster independence and enable personal choice and control.Evidence suggests that investment in appropriately designed and well-located housing has positive outcomes for people with disability.Evidence collected within this outcome framework has the potential to ensure models of housing and support that are responsive to the diverse and changing needs of people with disability.
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Pessoas com Deficiência , Habitação , Humanos , Características de Residência , Cuidados Paliativos , PaisRESUMO
PURPOSE: Family-centred service is considered best practice in paediatric acquired brain injury (ABI) rehabilitation. However, there is no universal model to guide clinicians and services in implementing this approach with a lack of research evidence informed by the lived experience of families. This study explored experiences of family-centred service during rehabilitation from the perspectives of parents/caregivers, siblings, and children/adolescents with ABI. MATERIALS AND METHODS: Semi-structured interviews were conducted with participants from eight families, and included 10 parents/caregivers, five siblings, and four children/adolescents with moderate to severe ABI. Interview transcripts and additional data were analysed using constructivist grounded theory methods. RESULTS: Two themes and five sub-themes were developed: (1) Working together as a team: Valuing clinicians' expert knowledge; Doing rehabilitation together; and Sharing family knowledge; and (2) Navigating rehabilitation as a family: Recognising family needs; Juggling family life; and Making rehabilitation work for the family. Participants reflected on the centrality of the child/adolescent with ABI during rehabilitation, and the ways that family needs, life, and involvement in rehabilitation change over time. CONCLUSIONS: These findings highlight the importance of clinicians actively seeking to understand families' unique contexts, needs, and priorities during rehabilitation through two-way information sharing with families. Through developing a greater understanding of families' unique contexts, clinicians can be better placed to tailor rehabilitation according to their unique circumstances and needs.Implications for rehabilitationRehabilitation involves active collaboration between families and clinicians that is responsive to changing needs over time.Family involvement in rehabilitation is shaped by family life, and families have unique needs following paediatric acquired brain injury.It is important that clinicians strive to develop an understanding of families' unique needs, values, preferences, and lives to determine how to best support and involve them in rehabilitation.
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Lesões Encefálicas , Família , Criança , Humanos , Adolescente , Pais , Relações Familiares , Cuidadores , Lesões Encefálicas/reabilitação , Pesquisa QualitativaRESUMO
PURPOSE: To explore barriers and facilitators to community reintegration experienced by people following traumatic upper limb amputation (ULA). METHODS: An exploratory qualitative study was conducted with ten adults with major ULA due to trauma. Data from individual, semi-structured interviews was analysed using Braun and Clarke's reflexive thematic analysis. RESULTS: Underlying and influencing community reintegration for participants, was a process of adjustment to the impacts of amputation on everyday function and re-establishing their identity. Participants felt social networks and peer support facilitated the return to social and community activities, as did drawing on personal attributes such as positivity, resilience and self-belief. Prosthetic devices were facilitative for community reintegration by minimising visible differences and unwanted attention through restored cosmesis and in the performance of functional tasks to fulfil social norms and meaningful roles despite issues with comfort and function. Despite the adaptation and evolution of abilities, perspectives and identities, the functional impact of ULA on everyday community activities was an ongoing challenge for all participants. CONCLUSION: ULA has a significant and lifelong impact on an individual's ability to complete tasks and fulfil meaningful roles in the community. Recommendations based on the study's findings will inform clinicians to support community reintegration for people following traumatic ULA.
Rehabilitative environments and interventions that promote self-efficacy, positivity, problem-solving skills and resilience may support adjustment and community reintegration following upper limb amputation.Facilitating appropriate peer support and the strengthening of existing social supports may assist social and community reintegration.The facilitative effects of prosthetics on community participation and reintegration may be enhanced through client-centred, goal-directed and timely prosthetic provision and training.Ongoing barriers and challenges with community participation may indicate the need for ongoing therapeutic intervention and support.
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Background: Children and adolescents who sustain an acquired brain injury (ABI) can experience acute and ongoing difficulties in a range of cognitive and functional domains, and their families often experience significant life changes and challenges. Family-centred service is therefore considered best practice in paediatric ABI rehabilitation. Despite widespread acceptance of family-centred service in this context, recent literature indicates that family needs are often unrecognised and unmet following paediatric ABI. Although family-centred service was introduced in the field of developmental disability over five decades ago, there remains a lack of clarity about how this approach is implemented in practice. Additionally, limited literature has discussed the implementation of family-centred service in paediatric ABI rehabilitation despite key differences between ABI and developmental disability, including nature and timing of onset, rehabilitation foci, and impacts on families. Aims: In this review, we aim to: (i) outline common sequelae of paediatric ABI with a focus on family outcomes; (ii) summarise paediatric rehabilitation and highlight opportunities for family support and involvement; (iii) discuss and synthesise literature across paediatric ABI rehabilitation and family-centred service to highlight gaps in knowledge and practice; and (v) identify clinical implications and future research directions. Conclusions: There is a clear need for greater clarity and consensus regarding the implementation of family-centred service in paediatric ABI rehabilitation. This review highlights the importance of providing professional development opportunities for clinicians to increase competency in practising in a family-centred manner, and opportunities to actively involve, empower and support families within rehabilitation. This review also emphasises the importance of services implementing relevant supports to address family needs where possible and developing clear referral pathways so that families can access further support elsewhere when needed.
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INTRODUCTION: Co-designing healthcare research and health services is becoming increasingly prominent. Co-design invites people with disability to leverage their lived experience knowledge to improve service provision, as well as ensuring meaningful and relevant research. Given the emerging nature of the use of co-design with adults with neurological disability, well-defined guidelines on best practice are yet to be developed. The aim of this scoping review is to synthesise available peer-reviewed literature which investigates the use of co-design in research and/or service development with adults who have an acquired neurological disability and live within the community. The findings of this review will help to guide future co-design practice, ensuring people with acquired neurological disability are best supported and engaged in the process. METHODS AND ANALYSIS: This review will follow methodology proposed by Arksey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis: Extension for Scoping Reviews. Systematic electronic database searches will be conducted between the years 2000 and 2022, via MEDLINE, CINAHL, PsycINFO, Scopus and Embase. Article screening and selection will follow the five-stage framework of Arksey and O'Malley, using Covidence software to support review of each retrieved article by two independent reviewers. Final selected qualitative and/or mixed-methods studies that meet the inclusion criteria will be charted, data collated, summarised and reported. Thematic synthesis will be applied to the qualitative data extracted from these studies. ETHICS AND DISSEMINATION: Ethics approval will not be required to conduct this scoping review. It is the authors' intention for the findings of this scoping review to be made available to relevant stakeholders through open-access peer-reviewed publication and disseminated with other healthcare and research networks via translation pieces, including the development of short video summaries and practice resources.
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Atenção à Saúde , Pesquisa sobre Serviços de Saúde , Humanos , Adulto , Serviços de Saúde , Projetos de Pesquisa , Revisões Sistemáticas como Assunto , Literatura de Revisão como AssuntoRESUMO
This paper describes the development and preliminary evaluation of a novel participant-led video (PLV) intervention to support people with disability (PWD) and cognitive and communication impairments to communicate their needs and preferences to their disability support workers. The PLV intervention was designed following a scoping literature review and workshop with PWD and close others. Subsequently, it was piloted with five primary participants with acquired brain injury and cognitive and communication impairments, five close other supporters and five facilitators. An independent mixed methods evaluation of the pilot was conducted with participants, close others and facilitators. All pilot evaluation participants reported high levels of satisfaction with the PLV intervention (mean ratings: primary participants 4.5/5.0; supporters 5.0/5.0; facilitators 4.8/5.0). When primary participants and their supporters were asked to rate how likely they were to recommend the PLV intervention, responses were extremely positive with the mean rating exceeding eight on a 10-point scale. Qualitative analysis of interview data revealed the PLV to be a person-centred experience for primary participants that was structured around sense of self and included having a voice and taking control in directing their lives, personal growth through participation and feeling validated through the experience. The production and use of PLV training resources has much potential to improve the delivery of support and maximise support outcomes by enabling people with cognitive and communication impairments to have choice and control, set their own goals and direct their supports. Further research is required with a larger sample size and longitudinal evaluation of participant outcomes.
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Transtornos da Comunicação , Pessoas com Deficiência , HumanosRESUMO
BACKGROUND: Despite the number of older people and people with disabilities increasing in Australia, it is unclear which housing design features are needed to support physical housing accessibility for people with and without disabilities across the lifespan. OBJECTIVE: This study drew upon the experience of occupational therapists to investigate accessible housing design features and home modifications to support aging in place and discharge from hospital to home. METHODS: A cross-sectional online survey exploring housing design features and home modifications was completed by 144 Australian occupational therapists over six weeks in 2021. Descriptive quantitative and qualitative data analyses were used. RESULTS: For both aging in place and hospital discharge, the most important housing design features included step-free access to the dwelling, large step-free showers, and bathroom and bedroom space on the ground floor. Qualitative findings also highlighted the importance of preparing for home modifications, such as reinforcing bathroom walls to support the post-build installation of grab rails. The most frequently needed modifications were for bathroom features, while structural changes to the dwelling were the most time-intensive modifications, requiring more than six weeks to be completed. CONCLUSIONS: External access to the home and internal access to bedroom and bathroom facilities can support aging in place and hospital discharge and mitigate the need for costly and time-intensive home modifications. While this study was conducted in Australia, the findings have relevance outside of this context, and are important for ensuring equitable accessibility for people with and without disabilities across the lifespan.
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Pessoas com Deficiência , Terapeutas Ocupacionais , Idoso , Austrália , Estudos Transversais , Habitação , Humanos , Vida IndependenteRESUMO
OBJECTIVES: COVID-19 has led to rapid changes in rehabilitation service provision for young people living with traumatic brain and/or spinal cord injury. The aim of this project was to understand the experiences of rehabilitation service providers during the acute response stage of the COVID-19 pandemic. Specifically, we aimed to identify innovative approaches to meeting the ongoing needs of young people with traumatic brain and/or spinal cord injury during this time. SETTING: This study was conducted at a research institute and involved remote interviews with key informants around Australia and internationally. PARTICIPANTS: Key informants from 11 services supporting children and/or adolescents with traumatic brain injury and/or spinal cord injury were interviewed using a semistructured interview guide. Interviews were transcribed and analysed using inductive thematic analysis. RESULTS: Three key themes emerged: (1) recognising and responding to the experiences of families during the pandemic, (2) the impact of greater use of telehealth on care delivery, and (3) realising opportunities to enhance family-centred care. CONCLUSIONS: These themes capture shifting perspectives and process changes relevant to longer term practice. Research findings suggest opportunities for future service development, enabling service delivery that is more family centred, flexible and efficient in meeting the needs of families. Understanding these experiences and the changed nature of service delivery provides important insights with implications for future service improvement.