Exploring the intricate relationship between individual and collective experiences, this study explores dignity from the perspectives of people with disability. Using an extreme citizen science approach, we engaged people with disability as active partners in gathering data through qualitative surveys and focus groups. Framework Analysis was employed to ensure the validity of findings while privileging the voices of people with lived experience of disability. Dignity was contingent on the acknowledgement of personhood and the delivery of human rights. Our research identified five key aspects to maintain and protect dignity: (1) acknowledging personhood; (2) recognising people with disability as decision-makers of their lives; (3) realising the right to access information; (4) maintaining the right to privacy; and (5) eliminating or minimising barriers to accessibility and inclusion. Undignified experiences that resulted from a lack of acknowledgement negatively affected participants' wellbeing, and healthcare settings were identified as particularly challenging environments for dignity. These findings have significant implications for healthcare systems and services within an international and interdisciplinary context. They emphasise the need for adaptable, flexible services, co-designed with people with lived experience of disability. Addressing organisational constraints, resource limitations, and expectations is paramount to ensuring dignity is maintained through the acknowledgement of personhood and safeguarding of human rights.

Points of interestPublic transport systems can play an important role in enabling, facilitating and sustaining dignity for people with disability.People with disability experience theoretical and practical gaps when using trains and buses.Gaps result from infrastructure, environment, information, and attitudinal barriers.Universal Design, access to accessible and inclusive information, and empathic attitudes help create dignified mobility experiences for people with disability when using buses and trains. When transport systems are accessible and inclusive, people with disability experience dignity. Alternatively, when personal mobility is constrained by physical, social and/or communication, barriers, people with disability experience exclusion and an increasing vulnerability to indignity. This study sought to qualitatively explore the role of trains and buses in an Australian city in supporting access, inclusion and dignified mobility experiences for people with disability. Twenty-six semi-structured interviews were conducted with participants with diverse visible and invisible disabilities and were analysed thematically using Framework Analysis. The findings highlight the complexities involved with navigating public transport systems while maintaining dignity for people with disability. Accessible and inclusive information, infrastructure, and interactions with staff ensured dignified mobility experiences. If any part of a journey was inaccessible, participants were vulnerable to indignity. Dignified mobility experiences represent a complex and dynamic interaction between personal experiences and preferences, impairment-specific requirements, transport infrastructure, interpersonal experiences, and information inclusivity.

Little is known about why people with disability choose to take part in disability research and what their experience is like. Knowledge of this may help researchers and research ethics committees improve the empowered and ethical participation of people with disability in disability, healthcare, and human service focussed research. This cross-sectional mixed-methods study explored the perspectives and experiences of a group of Australian adults with disability regarding their involvement in research. Online surveys (N = 29) and follow-up interviews (N = 15) were conducted. The study found the decision to participate was a complex appraisal of benefit to self and others, research relevance, value, comfort, convenience, safety and risk. The attitudes and behaviours of researchers in cultivating trust by adopting an empathic approach to the conduct of disability research appear to be an important aspect of participant experience. Research ethics committees may benefit from knowledge of the ‘microethical’ moments that occur in such research.

INTRODUCTION:Engaging citizens and patients as research partners is receiving increasing emphasis across disciplines, because citizens are untapped resources for solving complex problems. Occupational therapists are engaging in inclusive research, but not always in equitable partnership. Moving beyond inclusive research to a dignified framework for research prioritises lived experience and human rights in health research.METHODS:Using nominal group technique over a series of three working group meetings, eight experts, including three with lived experience of disability and research, prioritised principles and steps for conducting dignified rehabilitation research in partnership with citizens with disability.FINDINGS:Embedding transparency, accessibility and inclusion, dignified language, and authenticity throughout research were integral to maintaining dignity and safety for citizens with disability engaged in research. The Dignity Project Framework encompasses five phases, namely, (1) vision, (2) uncover, (3) discuss, (4) critical reflection, and (5) change, which address the prominent criticisms of the disability community about research and embed the principles of importance into research practice.CONCLUSION:The framework builds on inclusive research frameworks to a human rights-based, dignified framework for extreme citizen science. Grounding disability in contemporary conceptualisations and providing a method for democratising knowledge production provide occupational therapists with a method for dignified partnership with citizens with disability.

BACKGROUND:The cohort of people requiring in-hospital rehabilitation continues to age and experience more co-morbidities. How these changes impact the role of the rehabilitation nurse within rehabilitation teams is not clearly established.AIM:Describe how nurses work within rehabilitation teams in hospital-based rehabilitation units.DESIGN:Scoping review METHODS: Four datasets, Medline, CINAHL, Web of Science and EMBASE were searched. Studies were selected if they focused on nurses' roles in rehabilitation teams and were conducted in adult inpatient settings. Data were extracted and analysed by two researchers. An inductive descriptive approach was used for the analysis. Themes were finalised in a consensus meeting with the team.RESULTS:Twenty-four papers from Europe, United Kingdom, Canada and Australasia were found. Two themes were derived from the data: 'Nursing work is essential but rendered invisible' and 'Fluctuating teams and patient goals are momentarily stabilised through formal structures and processes'. Nurses were found to be working with three models of care, clinical, personal and rehabilitation within a culture focused only on rehabilitation. Nurses predominantly used relationship-based ad hoc communication strategies with other team members. Relationship-based interprofessional communication momentarily stabilises nurses' rehabilitation practice.CONCLUSION:Reframing rehabilitation nursing, to acknowledge the multiple models of care and communication mechanisms that are used in interprofessional teams is required. Building the team's capacity to work collaboratively in the fluctuating environment of rehabilitation requires attention to how intersubjectivity can be developed.TWEETABLE ABSTRACT:Scoping the role of nurses in rehabilitation care teams.

Planning for discharge and supports beyond hospital for people with disability in Australia involves negotiation of complex care systems. The aims of this study were to examine how the individualised support pathway of the National Disability Insurance Scheme (NDIS) functioned for admitted people with disability who required funded support to leave hospital; and to explore the factors indicative of increased care complexity associated with delays. Retrospective chart reviews of people with disability were conducted. Data on 198 eligible patients were extracted, including NDIS plan approval and plan implementation timeframes and discharge delay. Participants' median age was 52 years (interquartile range = 41-59). The most common disability type was spinal cord injury (41%). The median NDIS plan approval and implementation timeframes were 89 days (63-123) and 39 days (8-131), respectively, and most participants (72%) experienced a delayed discharge. A longer plan implementation timeframe was associated with higher odds of a delay in discharge (OR = 3.41, 95% credible interval = 1.56, 7.11). We did not find any evidence that plan approval timeframe, or any other variable indicative of increased care complexity, was associated with discharge delays. Our findings suggest that a delayed discharge will likely be the reality for people with disability who require funded supports to leave hospital. They also suggest that NDIS plan implementation is a major challenge and a focus for policy and practice improvements. To target solutions, further research should focus on the interactions and negotiations of the multiple intermediaries involved and resource and structural impediments to plan implementation.

Informal carers provide the majority of direct care to older Australians and play an essential role in assisting older people with complex care needs to remain living in their own homes. With greater emphasis on the community as a more appropriate site for responding to and managing the needs of older people, carers are increasingly faced with systemic responsibilities, including coordination of fragmented services and providers across multifaceted health and aged care systems and negotiation of treatment and supports. Consequently, this work may be perceived by carers as burdensome. The aim of this qualitative study was to explore the lived experiences of carers of community-dwelling older adults in undertaking the systemic work of caring. Specifically, the aim was to explore their experiences of managing and coordinating treatment and supports across multiple services and systems. The concept of Burden of Treatment was used to understand the work of navigating, negotiating and managing care of the older person, how carers made sense of this, and what personal resources they drew on. A descriptive phenomenological approach was taken to guide the research. Semi-structured interviews were conducted with 16 carers of community-dwelling older adults with complex care needs. Giorgi’s phenomenological data analysis methods (1997) was utilised for the data analysis. Two main themes were derived from the analysis, each comprising three sub-themes. The first theme, Becoming part of the caring system, comprised: (a) Entering the caring system, (b) A sense of obligation and duty, and (c) Work at the nexus of present and future. The second major theme, Mastering the caring system, comprised: (a) Making connections, (b) Activating the management plan, and (c) Voicing and advocating needs in the caring system. Participants felt a sense of expectation and responsibility from others, including family and health and aged care providers to take on the caring work. Many perceived they had no alternative but to respond to systemic demands when seeking to manage the needs of the older person and described the challenge of this work as managing multiple and complex organisational and administrative processes across different systems while locating, accessing and coordinating services for the older person. The findings showed an experience of being adrift and having to piece together disjointed pathways. Participants also described the work of trying to make systems more responsive to the older person for a better outcome. Furthermore, the findings illustrated the varied skills required to master the systemic work, including administrative, communication, advocacy, problem-solving and negotiation abilities. Some carers drew on personal resources, robustness and abilities while others often felt overwhelmed and unsure of how to proceed. The findings indicate that through addressing the systemic work placed on carers, the burden placed on them can be alleviated. From a system perspective, streamlining and reducing duplication of assessments, improving information access, improving communication and targeting partnerships between differing organisations can reduce system complexity which in turn will reduce the demands made on carers. Consideration of models of system navigation, care co-ordination, and case management would support those who struggle to independently master the system. The findings also suggest that there is scope for health care professionals and service providers to better identify carer requirements and assess carer capacity to manage the work. Without investment to assist carers to do the increasingly complex work, there is a risk of disparity between those that are equipped to access services and supports and those that will that continue to flounder and forego appropriate care for the older person and support for themselves.

Background: In Australia, the gap in mental health and addictions outcomes between Indigenous and non-Indigenous people is well documented. The integration of Indigenous mental health and addictions (IMHA) workers into mainstream mental health services has been adopted to provide more culturally appropriate services, and address health disparities. However, processes for utilizing the role and strategies for supporting this workforce are unclear. This study aimed to understand the experiences of IMHA workers in two Metropolitan Hospital and Health Services (HHSs) to assist in the development of policy and workforce support strategies. Methodology: In-depth semi-structured interviews were conducted with IMHA workers (n = 17) and analyzed thematically. Results: The IMHA workforce is extremely valuable, but complex, and confronted by challenging systemic barriers. Experiences of isolation, lack of cultural safety, and limits on practice are common. This situation creates difficulty for the IMHA workers and undermines their effectiveness to work in ways preferred by the IMHA workers. Conclusion: Enhancing cultural safety for the IMHA workforce is a crucial precursor to achieving culturally appropriate service provision for Indigenous consumers. The interaction of cultural safety for IMHA workers with consumer outcomes and experiences is an important area for future research.

BackgroundRapidly implementing telehealth-facilitated healthcare services in a COVID-19 environment generates relational challenges for people with intellectual disability. Disability Nurse Navigators assume a critical intermediary role between the healthcare system and this population.AimTo discuss the impact that rapid service change, in response to the COVID-19 pandemic, can have on people with disability and the work of Disability Nurse Navigators who support them.MethodsThis clinical case discussion comprises two parts. First, a discussion on the impact that COVID-19 pandemic management has had on one person with an intellectual disability is framed using intersecting notions of cumulative complexity and Burden of Treatment Theory. Following, through a Latourian lens, the role of the Disability Nurse Navigator is explored.FindingsDuring COVID-19, telehealth has proved an important tool for healthcare continuity. Yet, for some people with some disabilities who live with additional and cumulative layers of health and social complexity, the healthcare workload that is transferred to them is exacerbated as they try to interact with disabling infrastructure.DiscussionThe Disability Nurse Navigator recognises that people with disability are not independent of the technologies and structures that make up the healthcare system but that they are mutually constitutive. The Disability Nurse Navigator thus works to stabilise the relationships between changed service provision and the healthcare workload and capacity of people with disability.ConclusionThe work of the Disability Nurse Navigator ultimately mitigated the disruption and additional treatment burden that is transferred to people with disability because of unintended consequences arising from the rapid introduction of service change.

Informal carers provide the majority of care to older Australians and play an essential role in assisting older people with complex care needs to remain living in their own homes. As such, carers are increasingly faced with systemic responsibilities, including coordinating services across multifaceted health and aged care systems and negotiating treatment and supports. The aim of this study was to explore how systemic complexity and associated work is experienced by carers of older adults and what personal capacities carers draw on in managing the systemic work. A descriptive phenomenological approach guided the research. Semistructured interviews were conducted with 16 carers of community-dwelling older adults with complex care needs recruited through a local health service. Giorgi's phenomenological data analysis methods (1997) was utilised for the data analysis. Two main themes were derived from the analysis: Becoming part of the caring system and Mastering the caring system. The findings indicate that the majority of carers perceived the work of interacting with multiple systems and services as a burden and an onerous obligation. Furthermore, change in the health or social circumstances of the older adult amplified differences in the nature of the systemic work and concomitantly revealed differences in carers' capacities. This paper reveals that the caring system is in some sense disposed to create disparities, as carers' specific capacities were integral to mastering the systemic work. An understanding of informal care work that supports older people to live in the community can assist health care professionals and service providers to better identify carer requirements and assess carer capacity to manage the work.

Background: While there have been increased calls for mental health consumers to be involved in mental health services research, there is limited research exploring the research interests of this group. Aims: To compare the interests in different research topics of a peer workforce (people who are employed to use their lived experience of mental illness and recovery to support others) with those of Allied Health Professionals in a Hospital and Health Service. Method: A survey asking participants to rate their interest in researching various topics was distributed to the peer and allied health workforce. Differences between the two groups were tested with the Kruskal-Wallis test for independent samples. Results: The peer workforce consistently rated their interest in all questions as greater than the Allied Health Workforce with five of the seven questions showing statistically significant differences. The median ratings of interest for four of the seven topics were high for both the peer and allied health. These were primarily items on how to help. The peer workforce also expressed a greater interest in being involved in the research. Conclusions: Our study emphasises the importance of creating opportunities for including the peer workforce in all aspects of the research process.

Successive health policies demonstrate unwavering commitment to partnering with consumers and communities. However, engaging consumers is complex and replete with priorities, perspectives and values that are firmly held, virtuous and different. In the context of political imperatives and different approaches to partnering with consumers in health services, we sought to explore consumers' experiences of engagement in public, private, primary care and non-government health services in Queensland, Australia. Participants identified themselves as consumers of health services and were currently, or had previously been, involved in planning, designing, delivering, monitoring and/or evaluating health services; were aged over 18 and consented to being involved. This qualitative study used semi-structured individual interviews to collect data which were analysed thematically. Four themes were identified, (a) authentic engagement and representation: asking, listening and acknowledging; (b) a continuum of consumer expertise; (c) contested engagement: transgressing health services thresholds of tolerance and (d) creating value for consumers and health services: reciprocity, trust, respect and remuneration. Findings demonstrated that 'rules of engagement' exist between consumers and staff employed in clinical, managerial, executive and administrative positions within health services in response to a legislated requirement that health services partner with consumers. The rules of consumer engagement centred on authenticity, transparency, expertise and individual capacity to transcend personal experience. If health services and the broader public are to fully benefit from safety and quality advances proposed by partnering with consumers, then it is essential that areas of contestation are identified and addressed.

Introduction: The importance of peer support workers in mental health care delivery has been extensively advocated for in mental health policy frameworks. However, there has been limited research examining the implementation of paid peer workers in clinical settings. This study explores the experience of paid peer support workers integrated within a clinically-operated community-based residential rehabilitation service for people diagnosed with a mental health disorder experiencing challenges living independently in the community. Methods: A general inductive approach was taken in the analysis of diaries completed by a newly employed peer workforce. These diaries focussed on what they viewed as significant interactions in fulfilling their role. Composite vignettes were generated to illustrate key themes. Findings: Thirty-six diaries were provided; these reported unplanned and spontaneously occurring interactions. Peer workers emphasized the importance of connecting with people while they were engaging in everyday activities as an opportunity for personal growth of the residents. The diaries also focussed on the peer workers' ability to connect and establish trust by sharing similar experiences with residents or family members. Peer workers also believed that they brought a different perspective than clinical staff and were able to refocus attention from clinical diagnoses and symptoms to other aspects of the resident's lives. Discussion: Peer support workers described their work as flexible, responsive, and adaptable to the resident's needs. They believed that their roles brought a different lens to interactions on the unit and fostered a more inclusive and personal way of working for the team. Conclusion: To ensure that peer workers can engage authentically with residents and family members, it is critical that the role and principles of peer work are valued and understood by all.

The insights of people who have experienced mental health issues are at the core of recovery frameworks. The inclusion of peer support workers in clinical care teams is crucial to a recovery-supportive focus. Peer support workers facilitate egalitarian spaces for non-peer staff and consumers to frankly discuss the lived experience of mental illness. This study was part of a larger evaluation study which aimed to explore the implementation of a newly formed community-based mental health team in South-East Queensland, Australia. The paper reports the role of peer support workers and answers two research questions: “How is peer support work constructed in an interprofessional clinical care team?” and (2) “How do interprofessional mental health clinical care teams respond to the inclusion of peer support workers as team members?” Three themes were identified: peer support worker’ ability to navigate a legitimate place within care teams, their value to the team once they established legitimacy and their ability to traverse the care landscape. Ultimately, successful integration in interprofessional teams was dependent upon the ability of clinical staff to focus on unique strengths that peer support workers bring, in addition to lived experience with mental illness as a carer or consumer.

Purpose: Much of the support required to live in the community post-traumatic brain injury (TBI) is provided by informal carers. Understanding the nature of caregiving work is important to better support informal carers. This study explored the work being performed by informal carers, and factors impacting on their capacity to manage the workload.Method: Participants comprised 21 dyads each consisting of an adult with moderate to severe TBI and a nominated carer. Thematic analysis was done on semi-structured interviews with injured participants and carers during the 12-month period post-discharge from hospital.Results: Results revealed two main themes and eight subcategories: (1) The nature of informal care: describing informal care management work, (personal assistant work; care provider work; family support work; and emotional self-regulation work), and (2) Mediating factors that impacted people's capacity to manage workload (carer intrinsic factors; injured person characteristics; family circumstances; and changes over time.)Conclusion: Rehabilitation providers supporting people following TBI need to focus on broad family contexts; understand the nature of work being undertaken, and carer capacity to carry out that work; and be aware of the unique and changing circumstances of families to better support informal carers.Implications for rehabilitationRehabilitation services need to focus on broad family contexts rather than focus on the injured individual in isolation.Understanding the nature of the work being undertaken by informal carers, and their capacity to carry out that work is important when considering supports.Rehabilitation professionals need to consider and respond to the impact that changing circumstances have on the capacity of informal care networks to manage care workload.

Some people with disabilities may have greater risk of contracting COVID-19 or experiencing worse outcomes if infected. Although COVID-19 is a genuine threat for people with disabilities, they also fear decisions that might limit lifesaving treatment should they contract the virus.During a pandemic, health systems must manage excess demand for treatment, and governments must enact heavy restrictions on their citizens to prevent transmission. Both actions can have a negative impact on people with disabilities.Ironically, the sociotechnical advances prompted by this pandemic could also revolutionize quality of life and participation for people with disabilities. Preparation for future disasters requires careful consideration.

BACKGROUND:Social networks are known to have a major influence on the recovery journey of people with severe mental illness (SMI).AIMS:To understand the role of bonding and bridging social capital in the recovery process following SMI and to identify the barriers that prevent social networks from being mobilized.METHOD:A review of major electronic databases for qualitative studies from 2006 to 2015 (41 papers) was undertaken for thematic synthesis.RESULT:The main themes for bonding social capital included: a buffer for isolation and loneliness, variations depending on illness stages, balance in relationships and connections as a source of self-management. Main themes for bridging social capital comprised: feeling powerless and excluded from community/health care, social care beyond the illness, social care barriers and social inclusion through community groups.CONCLUSION:All those involved in the management of SMI must be aware of how social support networks hinder or contribute to recovery. People with SMI need opportunities to form reciprocal relationships and sustain supportive networks that can assist them to endure the challenges presented by SMI.

Introduction: In the Metro South geographical area in South East Queensland, the Logan Beaudesert Wellbeing Program was developed and implemented in order to offer revolutionary, community-based, person-centred care. Staff entered the program feeling passionate about recovery; hoping to achieve better outcomes for people with severe mental illness who were at high risk of hospital admission or readmission through the use of intensive recovery-oriented practice. This qualitative study aimed to elucidate how health professionals practice in a recovery-oriented way, and reports on: health professionals’ conceptualisations of recovery; how health professionals turn the concept of recovery into recovery-oriented practice; and how health professionals go about supporting recovery in practice.Theory / Methods: Staff were invited to participate in individual, face-to-face, semi-structured interviews prior to on-boarding consumers (n=24), and again six months after the program commencement date (n=21). A total of 16 participants partook in both pre and post implementation interviews. Research questions were based on Normalization Process Theory. Interviews were digitally recorded and transcribed verbatim. Two researchers then thematically analysed the data using techniques of initial coding. Data were then collectively aggregated into higher order themes, continuing until all data were accounted for and a succinct representation of themes was accomplished.Results: The concept of recovery is subjectively interpreted. Furthermore, understandings continue to shift as health professionals grow accustomed to the addition of peer support workers in multidisciplinary teams. Whilst some health professionals are interpreting recovery-orientation from a medically oriented paradigm, others view recovery-orientation as a way of life rather than a prescriptive approach that can be learned through traditional methods.Discussion: There was cause for concern that health professionals’ subjective conceptualisations of recovery, and past design of treatment according to medical definitions of mental illness, influenced therapeutic relationships. However, participants were keen to break these trends and felt strongly that person-centred practice should underpin all aspects of the treatment program, including service design.Conclusion: Health professionals are aware that recovery-oriented practice is yet to become the predominant way of working in mental health. Thus, in addition to generating best outcomes for people with severe mental illness, health professionals see their roles as important for developing and spreading the ethos of person-centred care amongst the health care community.Lessons learned: The paradigm shift away from medically-oriented mental health practice toward recovery-oriented practice presents significant rewards and challenges for health professionals. Supporting recovery in a legislated context requires special levels of navigation and negotiation. Critically reflective practice is imperative for the ongoing development of health professionals’ conceptualisations of person-centred care.Limitations: Because this research occurred in the specific context of a pilot program in South East Queensland, generalizability beyond this context cannot be assured. Conceptualisations of person-centred and recovery-oriented practice may differ in other locations.Future Research: Longitudinal studies would be of benefit to continue to gauge how health professionals’ conceptualisations of recovery change over time; with a particular view to investigating whether over time, health professionals revert to more traditional, less person-centred ways of working in mental health practice.

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 2.913 (2021 JCR, received in June 2022)The IJIC 20th Anniversary Issue was published in 2021.

Inpatient psychiatric care requires a balance between working with consumers' priorities and goals, managing expectations of the community, legal, professional and service responsibilities. In order to improve service delivery within acute mental health units, it is important to understand the constraints and facilitating factors for good care. We conducted a systematic narrative synthesis, where findings of qualitative studies are synthesised to generate new insights. 21 articles were identified. Our results show that personal qualities, professional skills as well as environmental factors all influence the ability to provide recovery focused care. Three overarching themes which either facilitated or hindered were identified. These included: (i) Complexity of the nursing role (clinical care; practical and emotional support: advocacy and education; enforcing aspects of the Mental Health Act. and, maintaining ward safety); (ii) Constraining factors (operational barriers; change in patient characteristic; and competing understandings of care); and (iii) Facilitating factors (ward factors; nursing tools; nurse characteristics; approach to people; approach to work and ability to self-care). We suggest that the therapeutic use of self is central to the provision of recovery oriented care. However person-centred practice can be fragile and fluid and a compassionate system of support is needed to enable an understanding of context and self. It is critical to have a work environment which fosters hope and optimism and is supportive of autonomy, ensures workload balance, and is safe.