Investigating employers' attitudes and knowledge about employing someone with a spinal cord injury.

PURPOSE: The aim of this study was to gain an understanding of employers' attitudes to, knowledge about, and policies relating to employing someone with a spinal cord injury (SCI). METHODS: Semi-structured interviews were conducted with nine employers located in Australia from a range of backgrounds and different sized businesses. The interviews were thematically analysed. RESULTS: Three themes were identified: Organisational policies (sub-themes: Recruitment - inherent requirements of the role vs risk mitigation; Recruitment strategies and targets; Disclosure; Accommodations needed or offered); Barriers & facilitators (sub-themes: Lack of knowledge about SCI; Physical accessibility; Workplace culture); Personal attitudes (sub-themes: Personal attitudes don't align with organisational policy; Personal experiences informed understanding). CONCLUSIONS: Organisational policies and practices of the employers' organisations, and workplace culture impact the likelihood of someone with a SCI being employed, particularly in relation to recruitment, employment targets, and available accommodations. Individual staff attitudes and knowledge also influence this process. Multi-faceted approaches are needed to increase the employment of people with SCI.

Barriers to employing someone with spinal cord injury (SCI) include lack of knowledge about SCI, and lack of knowledge about workplace lawsOrganisational policies and practices of organisations impact the likelihood of someone with an SCI being employedIndividual staff attitudes influence employment of people with SCIEmployers' knowledge about and confidence in employing people with SCI, is an important area to target interventions.

Experiences of people with non-traumatic spinal cord injuries returning home after inpatient rehabilitation.

PURPOSE: The aim of this study was to explore the experience of people with non-traumatic spinal cord injuries who have recently returned home from inpatient rehabilitation. METHODS: Semi-structured interviews were conducted with seven adults with non-traumatic spinal cord injuries who had been discharged from inpatient rehabilitation from an Australian rehabilitation hospital, within the last two years. RESULTS: Three themes were identified: the practicalities of coming home; adjusting to "my altered home life"; pursuing recovery. When people felt prepared by their rehabilitation service, and had appropriate support from others, they had a more positive adjustment experience, although not one without challenges. Due to less independence and inability to participate in meaningful life roles, participants experienced a sense of lost or changed identity. Maintaining hope for physical recovery was very important and motivated participants to actively engage in rehabilitation efforts. CONCLUSIONS: This study adds to the knowledge regarding the lived experience of people with non-traumatic spinal cord injury transitioning from rehabilitation to home. Facilitators for successful rehabilitation discharge included ensuring community services contacted patients immediately after they left hospital, and providing support for carers. Health care workers can positively influence the adjustment process of people with NTSCI by facilitating re-engagement in meaningful roles.IMPLICATIONS FOR REHABILITATIONThe transition home from inpatient rehabilitation after non-traumatic spinal cord injury (NTSCI) is facilitated by early discharge planning and follow-up from services after discharge.Establishing routines helped participants adjust to their new circumstances.The emotional and practical support of carers is vital for successful adjustment to living in the community with an NTSCI.Health care workers can positively influence the adjustment process of people with NTSCI by facilitating their re-engagement in meaningful roles.

Steps to implementation: Understanding barriers and enablers for implementing Arts on Prescription at Home for people impacted by dementia.

ISSUE ADDRESSED: Arts on Prescription at Home (AoP@Home) involves a professional artist visiting a person with dementia and their informal carer(s) in their own home to engage them in participatory art making. While there is evidence for the use of these programs, more work is needed to facilitate effective implementation. This study explored contextual barriers and enablers to implementation of AoP@Home within a real-world community aged care service. METHODS: Two remote focus groups were conducted at a community aged care provider in Sydney, Australia. Key stakeholders (n = 14) were recruited, representing: people with dementia, informal (family) carers, AoP artists, service referrers and community service managers. Focus group transcripts were analysed using qualitative content analysis and mapped onto the Consolidated Framework for Implementation Research (CFIR). Outcomes were reviewed against the Expert Recommendations for Implementing Change (ERIC) strategy compilation to inform development of a tailored implementation strategy. RESULTS: Four overarching themes described the range of barriers and enablers to AoP@Home implementation: (1) "I don't know enough about it" (awareness and engagement within the sector), (2) artists delivering programs, (3) awareness and engagement of people impacted by dementia, (4) practicalities of implementation. All five domains of the CFIR were represented across the four themes. The ERIC compilation provided a list of practical strategies for implementation of AoP@Home. CONCLUSIONS: The implementation of psychosocial interventions for people living with dementia within a community aged care service is complex and multifactorial. So what?: Organisations planning implementation should consider conducting their own pre-implementation analysis to identify context-specific strategies.

First-person disavowals of digital phenotyping and epistemic injustice in psychiatry.

Digital phenotyping will potentially enable earlier detection and prediction of mental illness by monitoring human interaction with and through digital devices. Notwithstanding its promises, it is certain that a person's digital phenotype will at times be at odds with their first-person testimony of their psychological states. In this paper, we argue that there are features of digital phenotyping in the context of psychiatry which have the potential to exacerbate the tendency to dismiss patients' testimony and treatment preferences, which can be instances of epistemic injustice. We first explain what epistemic injustice is, and why it is argued to be an extensive problem in health and disability settings. We then explain why epistemic injustice is more likely to apply with even greater force in psychiatric contexts, and especially where digital phenotyping may be involved. Finally, we offer some tentative suggestions of how epistemic injustice can be minimised in digital psychiatry.

Disability, Transition Costs, and the Things That Really Matter.

This article develops a detailed, empirically driven analysis of the nature of the transition costs incurred in becoming disabled. Our analysis of the complex nature of these costs supports the claim that it can be wrong to cause disability, even if disability is just one way of being different. We also argue that close attention to the nature of transition costs gives us reason to doubt that well-being, including transitory impacts on well-being, is the only thing that should determine the wrongness of causing or removing disability. Non-welfare considerations also defeat the claim that it is always wrong to cause disability. The upshot of these conclusions is that closer attention to the nature of transition costs supports disabled people who strenuously contest the assumption that their well-being is lower than nondisabled people. It also suggests that, in addition, disabled people should contest their opponents' narrow account of how we should make ethical decisions regarding causing or failing to prevent disability.

Improving Policy for the Prevention of Falls Among Community-Dwelling Older People-A Scoping Review and Quality Assessment of International National and State Level Public Policies.

Objectives: Effective public policy to prevent falls among independent community-dwelling older adults is needed to address this global public health issue. This paper aimed to identify gaps and opportunities for improvement of future policies to increase their likelihood of success. Methods: A systematic scoping review was conducted to identify policies published between 2005-2020. Policy quality was assessed using a novel framework and content criteria adapted from the World Health Organization's guideline for Developing policies to prevent injuries and violence and the New Zealand Government's Policy Quality Framework. Results: A total of 107 articles were identified from 14 countries. Content evaluation of 25 policies revealed that only 54% of policies met the WHO criteria, and only 59% of policies met the NZ criteria. Areas for improvement included quantified objectives, prioritised interventions, budget, ministerial approval, and monitoring and evaluation. Conclusion: The findings suggest deficiencies in a substantial number of policies may contribute to a disconnect between policy intent and implementation. A clear and evidence-based model falls prevention policy is warranted to enhance future government efforts to reduce the global burden of falls.

Investigating the Challenges and Benefits of Engaging in Peer Support via Videoconferencing for People with Spinal Cord Injury.

BACKGROUND: One of the greatest challenges faced by people following a spinal cord injury is reintegrating into the community. Peer mentors are people who have had shared experiences of disadvantage and distress and have successfully navigated their way through the associated challenges to lead meaningful lives. Historically, peer mentoring services have been predominantly delivered via face-to-face interactions. Little is known about the experience of people with spinal cord injury engaging in online peer support services, and what the challenges and benefits are of this mode of delivery. METHODS: An anonymous online survey consisting of closed and open response questions was used to collect data. Quantitative data were analysed descriptively and qualitative data were analysed using inductive content analysis. RESULTS: Positive benefits of engaging in peer support via videoconferencing included convenience and social connectedness. The main barriers were problems with Wi-Fi and internet connections, inconsistencies between platforms and having to learn new platforms. Even though responses were mixed when comparing videoconferencing to face-to-face peer support, most participants felt socially connected. CONCLUSIONS: Addressing barriers through the provision of appropriate technology, and targeted and individualised assistance, is important to facilitate uptake of online peer support for people with spinal cord injury.

Community integration programs and interventions for people with spinal cord injury: a scoping review.

AIM: The focus of this scoping review was to identify the extent, range, and nature of studies that have been published regarding community integration programs and interventions that support people during the transition home from hospital following spinal cord injury. METHODS: Four electronic databases and one search engine were searched for articles published between 2010 and 2020. Grey literature and manual searches were also done. RESULTS: Of the 16 articles included, 8 were published in peer-reviewed journals. Two of these did not include an evaluation. Study designs included but were not limited to pilot studies (n = 2); mixed methods evaluations (n = 2); single-site randomized controlled trials (n = 3); and, non-randomized single-arm study design (n = 1). The articles were from the United States (n = 12), Canada (n = 2), Australia (n = 1), and the United Kingdom (n = 1). CONCLUSION: The majority of interventions focused on addressing health-related educational needs, followed by community mobility. Goal setting and promoting self-efficacy were identified as important components, and the importance of involvement of people with lived experience was also highlighted. There was a lack of focus on management of relationships, including addressing sexuality needs. This review highlights the need for further empirical evaluation of implemented programs and interventions in this area, particularly in countries other than the USA, to inform service development.IMPLICATIONS FOR REHABILITATIONSuccessful community integration is an important outcome of spinal cord injuries rehabilitation.The majority of published programs focus on health-related educational needs, followed by community mobility.It is recommended that goal setting and promoting self-efficacy are included in programs.It is recommended that people with lived experience of spinal cord injuries are involved in interventions.It is recommended that programs include a focus on management of relationships, including addressing sexuality needs.

Perspectives of individuals receiving occupational therapy services through the National Disability Insurance Scheme: Implications for occupational therapy educators.

INTRODUCTION: With the introduction of the National Disability Insurance Scheme (NDIS) in Australia, occupational therapy graduates need to be adequately prepared to support service users in this new policy context. There is, however, limited research informed by service users themselves to inform contemporary occupational therapy curriculum redesign. The aims of this study were: (a) to explore the experience of occupational therapy service provision from the perspective of service users with lived experience of disability; (b) to gain an understanding of the perceptions of people with lived experience of disability regarding the NDIS and whether it will change how they work with occupational therapists; (c) to gain an understanding of the perspectives of people with lived experience of disability regarding the NDIS, and how this influences curriculum content for occupational therapy education. METHODS: A pragmatic qualitative design, underpinned by the constructivist paradigm was utilised. Demographic surveys and semi-structured interviews were completed with 10 participants who were purposively recruited. Peer debriefing and use of an audit trail were undertaken to enhance the rigour of the analysis. RESULTS: Three themes were identified: (a) Occupational therapists as gatekeepers for equipment provision; (b) experience of the NDIS (Knowledge and understanding of the NDIS; Uncertainty regarding the NDIS; Choice and control in the NDIS); (c) curriculum content for occupational therapy. CONCLUSION: The insights provided by the people with lived experience in this study inform key areas of focus for occupational therapy curriculum to adequately prepare graduates to work in the evolving NDIS environment. Involving service users in an authentic manner in curriculum design, content delivery and student assessment is crucial for "real-world" applicability of student education.

A comparative examination of models of service delivery intended to support community integration in the immediate period following inpatient rehabilitation for spinal cord injury.

STUDY DESIGN: Qualitative study using semi-structured interviews. OBJECTIVES: To describe and compare models of service delivery intended to support community integration in the immediate period following inpatient rehabilitation for SCI, and describe the characteristics of these models or approaches. SETTING: Spinal services from multiple international countries METHODS: Semi-structured interviews were completed with 12 participants from a convenience sample of ten spinal services from developed economies. Interviews were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: Three themes were identified, and are described with supporting quotations. These are: Theme One-Models of service delivery (sub-themes: staffing, peer mentors, facilitating community integration during inpatient rehabilitation; Theme Two-Services provided (sub-themes: telehealth, vocational services, groups); Theme Three-Facilitating self-efficacy and self-management. CONCLUSIONS: A variety of models aimed at supporting community integration in the immediate period following inpatient rehabilitation for SCI were found. Multi-disciplinary staffing and involvement of peer mentors was common to all services. The importance of vocational rehabilitation was acknowledged by all participants, although the approaches taken to this varied. Telehealth has the potential to assist in self-management, particularly for patients who live a long distance from the spinal unit or are confined to the home for health reasons, and could be further developed. Although service models are greatly influenced by the funding context, the findings from this study can be used to inform service planning in this area.

Satisfaction with life, health and well-being: comparison between non-traumatic spinal cord dysfunction, traumatic spinal cord injury and Australian norms.

Study design: Cross-sectional survey. Objectives: The objective of this study is to compare self-reported satisfaction with life, and self-reported health and well-being of people with NTSCD, to that of people with TSCI, and with Australian population. Setting: Victoria, Australia. Methods: Participants completed surveys by post or email. The Satisfaction with Life Scale (SWLS) and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) were used to assess self-reported satisfaction with life, and health and well-being. Descriptive statistics are reported including median and interquartile range (IQR). The Mann-Whitney U-test was used to investigate differences between groups. Results: There were 41 participants: NTSCD (n = 14) and TSCI (n = 27). There were no significant differences in the median scores on the SWLS for NTSCD and TSCI, but both groups scored lower than the Australian non-disabled sample mean. There were significant differences between NTSCD and TSCI for SF-36 domains physical functioning, role limitations physical and vitality (p < 0.05). Median scores for both groups in all eight domains were lower than the means of the comparative Australian sample, except for role limitations emotional. Conclusions: There were more apparent difficulties for people with NTSCD in completing desired functional tasks than those with TSCI. Both groups had lower self-reported satisfaction with life, and lower reported health and well-being in comparison to samples of non-disabled Australians.

A scoping review of peer-led interventions following spinal cord injury.

STUDY DESIGN: Scoping review. OBJECTIVES: The objective of this study is to report on the extent, range and nature of the research evaluating peer-led interventions following spinal cord injury, and to categorize and report information according to study design, peer role, intervention type and intended outcomes. METHODS: Arksey and O'Malley's methodological framework for conducting scoping reviews was used. Original research studies of a peer-led intervention published between 2010 and present were included. CINAHL Plus, Ovid MEDLINE and PsycINFO were searched using key terms, in addition to citation checks. Data were extracted against a previously published consolidated typology. RESULTS: Significant heterogeneity in studies (n = 21) existed in aims and methods. Two studies reported on randomized controlled trials with relatively robust sample sizes and qualitative methodology was common. Peer role was frequently described as 'peer support', but there was variation in the description and duration of the interventions, complicating the categorization process. The majority of interventions were conducted one to one (n = 15). Studies most commonly aimed to address community integration (n = 15) and health self-management outcomes (n = 10). CONCLUSIONS: A small number of studies were eligible for review, although increasingly with rigorous designs. The nature of the peer mentor and mentee experiences were explored, and the interaction between the two, offering rich insights to the value of lived experience. Further work refining typology describing intervention type, peer roles and outcomes would facilitate replication of programmes and study designs, enabling statistical synthesis and potentially strengthening the credibility of peers as a viable resource in in-patient and community settings.

The experiences of social and community participation of people with non-traumatic spinal cord injury.

BACKGROUND/AIM: Incidence of non-traumatic spinal cord injury in Australia is increasing, which will result in more occupational therapists being involved in the rehabilitation of this group in the future. The profile of people with non-traumatic spinal cord injury differs from people with traumatically acquired spinal cord injuries, and their long-term health and well-being outcomes are not known. The aim of this study was to explore the experience of returning to social and community participation following non-traumatic spinal cord injury. METHODS: Qualitative methods were used for this study. Semi-structured interviews were conducted with seventeen people with non-traumatic spinal cord injury who had returned home. Data were analysed inductively utilising the thematic analysis method. RESULTS: The process of returning to social and community participation following non-traumatic spinal cord injury was identified as occurring in three main stages: withdrawal; re-emergence into society; and stability. Each stage consisted of adjustment and adaptation in a number of areas, including: the loss of independence; the experience of being out in public; social networks; participation in productivity roles; and expectations regarding satisfactory social and community participation. Many of the participants had developed or were developing strategies to adapt to the changes experienced in these stages. CONCLUSION: By using a qualitative approach, this study adds to the understanding of the adjustment process experienced by people following non-traumatic spinal cord injury when they return to living in the community. Although findings parallel those of studies conducted with people with TSCI, there are some differences that may warrant alternative approaches from occupational therapists working with people with NTSCI. Such approaches include assisting people with NTSCI to modify their expectations regarding how they will participate in the community, assisting them to find new meaningful roles, and facilitating the development of new social networks to replace lost ones.

Dignitarian medical ethics.

Philosophers and bioethicists are typically sceptical about invocations of dignity in ethical debates. Many believe that dignity is essentially devoid of meaning: either a mere rhetorical gesture used in the absence of good argument or a faddish term for existing values like autonomy and respect. On the other hand, the patient experience of dignity is a substantial area of research in healthcare fields like nursing and palliative care. In this paper, it is argued that philosophers have much to learn from the concrete patient experiences described in healthcare literature. Dignity is conferred on people when they are treated as having equal status, something the sick and frail are often denied in healthcare settings. The importance of equal status as a unique value has been forcefully argued and widely recognised in political philosophy in the last 15 years. This paper brings medical ethics up to date with philosophical discussion about the value of equal status by developing an equal status conception of dignity.

In sickness and in dignity: A philosophical account of the meaning of dignity in health care.

The meaning of dignity in health care has been primarily explored using interviews and surveys with various patient groups, as well as with health care practitioners. Philosophical analysis of dignity is largely avoided, as the existing philosophical literature is complex, multifaceted and of unclear relevance to health care settings. The aim of this paper is to develop a straightforward philosophical concept of dignity which is then applied to existing qualitative research. In health care settings, a patient has dignity when he or she is able to live in accordance with his or her standards and values. Accordingly, health care practitioners respect a patient's dignity when they refrain from transgressing the patient's standards and values, or refrain from forcing the patient to transgress his or her standards and values. This concept is shown to explain and illuminate most of the key qualitative findings. It therefore provides a more coherent and synthesised concept of dignity in health care.

Facilitators and barriers to social and community participation following spinal cord injury.

BACKGROUND/AIM: One of the factors known to contribute to a 'good life' following an acquired disability is making connections with others, often achieved through participation in activities outside the home. The majority of outcomes research following SCI has focussed on impairments and activity limitations with less emphasis on participation. This paper reports part of a larger study that explored the experience and meaning of social and community participation following SCI. The research question guiding the part of the study reported in this paper was: What are the facilitators and barriers to social and community participation following acquired SCI? METHODS: Semi-structured interviews were conducted with 17 adults with traumatically acquired spinal cord injury living in the community. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: Three main themes and 11 subthemes were identified. The main themes were: Resources and environmental accessibility impact social participation; other people influence community engagement; health issues affect social participation. Adequate financial resources and social support (from friends and family, and from peer mentors) were found to assist social participation, while the physical environment, unsupportive social attitudes and mental health issues were identified as barriers to community participation. CONCLUSIONS: This study contributes to the evidence base regarding outcomes following SCI. Enabling engagement in meaningful activities in the community must be at the forefront of occupational therapy intervention, both at an individual client level and through advocacy and policy involvement, to improve the quality of life of people with SCI living in the community.

Secondary health conditions experienced by people with spinal cord injury within community living: implications for a National Disability Insurance Scheme.

BACKGROUND: Australia's National Disability Insurance Scheme (NDIS) provides supports for individuals, delivered through a personalised participant planning process, to influence choice and goal attainment. AIM: This study aimed to use both quantitative and qualitative methods to examine the impact of secondary health conditions on the experiences of people with spinal cord injury (SCI) who have returned to community living, in the context of Australia's National Disability Strategy and recently launched NDIS. Exploration of lived experience of health conditions following SCI utilising this mixed methods approach may offer important insights for effective planning within an NDIS. METHODS: A cross-sectional survey using the Spinal Cord Injury Secondary Conditions Scale (SCISCS), demographic questionnaire and in-depth interview was undertaken with 33 people with SCI living in the community. Demographic and SCISCS data were reported using descriptive statistics. Interviews were audio-taped, transcribed and analysed thematically. RESULTS: Participants were on average 58.5 years of age and 20 years post-injury. Five key themes emerged relating to (i) spasm and pain; (ii) sexual dysfunction; (iii) pressure areas; (iv) fatigue; and (v) the impact of secondary health conditions on life role participation and choice of supports and equipment. CONCLUSION: Secondary health conditions can significantly impact occupational participation following SCI. Appropriate intervention, including customised equipment and direct support, if delivered as part of an effective NDIS, may prevent or reduce the severity of these conditions and offer the potential to influence health and participation outcomes of people who have returned to community living.