Dignity and the Importance of Acknowledgement of Personhood for People With Disability.

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.

The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation 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.

Case study discussion: The important partnership role of Disability Nurse Navigators in the context of abrupt system changes because of COVID-19 pandemic.

BACKGROUND: Rapidly 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. AIM: To 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. METHODS: This 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. FINDINGS: During 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. DISCUSSION: The 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. CONCLUSION: The 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.

Immediate and Long-Term Implications of the COVID-19 Pandemic for People With Disabilities.

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.

Bonding and bridging social capital in the recovery of severe mental illness: a synthesis of qualitative research.

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.

Living with ongoing whiplash associated disorders: a qualitative study of individual perceptions and experiences.

BACKGROUND: Whiplash associated disorders (WAD) are the most common non-hospitalised injury resulting from a motor vehicle crash. Approximately 50% of individuals with WAD experience on-going pain and disability. Results from intervention trials for individuals with chronic WAD are equivocal and optimal treatment continues to be a challenge. It may be that traditional quantitative measures included in treatment trials have not captured the full benefits patients experience through participation in an intervention. The aim of the present study was to explore participant subjective experiences and perceptions of living with on-going WAD. METHODS: Twenty-seven individuals with chronic WAD participated in a one-on-one, semi-structured individual telephone interview. All interviews were audio-taped, transcribed verbatim and data were analysed using an inductive thematic analysis process. RESULTS: Two themes emerged that described the experience of living with chronic WAD. First, all participants described navigating the healthcare system after their whiplash injury to help understand their injury and interpret therapeutic recommendations. Participants highlighted the need to 'find the right healthcare practitioner (HCP)' to help with this process. Many participants also described additional complexities in navigating and understanding healthcare incurred by interactions with compensation and funding systems. Second, participants described a journey of realisation, and the trial and error used to establish self-management strategies to both prevent and relieve pain. Participants described trying to understand the impact of their initial injury in relation to the gradual realisation that there may be on-going residual deficit. Seeking information from multiple sources, including personal experience gained through trial and error, was important in the search for acceptable management strategies. CONCLUSION: Recovery from a whiplash injury is an adaptive process and more than elimination of pain or disability, therefore may be different from common clinical patient reported outcomes. Early identification of patient understandings of pain, expectations of recovery, symptoms and therapy may help merge patient and HCP understandings. Additionally, helping individuals to recognise symptom triggers and develop appropriate strategies to minimise triggers may actively engage patients in their recovery. Finally, acknowledgement and validation of the whiplash injury by HCPs is seen by many as a necessary step in the recovery process.

General practitioner management of chronic diseases in adults with severe mental illness: a community intervention trial.

Objective The aim of the present study was to assess the effects of a community intervention aimed at general practitioners (GPs) by comparing Medicare claims data from patients with severe mental illness (SMI) of GPs exposed to the intervention and controls that were not. Methods A comparison was made of primary care consultation and pathology data of people with SMI from intervention and control areas. Negative binomial regression models were used to compare the frequency and length of GP consultations, as well as the number and type of pathology examinations. Results Records of 103 people from intervention area and 98 controls were obtained. Intervention and control areas were not different at baseline in terms of age and claims data, but females had higher consultation rates. After adjusting for gender, people from intervention areas had more GP consultations, especially long consultations (adjusted incidence rate ratio 1.56; 95% confidence interval 1.28-1.91). They also had more pathology screening for chronic diseases, in accordance with implemented guideline recommendations. These benefits persisted after the end of the intervention. Conclusion These findings suggest that the ACTIVATE program aimed at training GPs to screen and better manage chronic diseases in adults with SMI had a positive effect up to 6 months after the trial, with demonstrated desired changes in medical management practices by GPs in the intervention area during that time. What is known about the topic? People with an SMI have higher mortality and poorer physical health than the general population. What does this paper add? The community intervention had a significant and sustained effect, with demonstrated desired changes in screening and medical management by GPs for adults with SMI in the intervention area. What are the implications for practitioners? GPs are ideally placed to assist in the prevention and better management of health conditions, thereby reducing avoidable illness and deaths in vulnerable populations, such as adults with SMI. Ongoing professional training and dissemination of clinical guidelines are critical for raising awareness about the physical and oral health care needs of people with SMI.

Understanding the nutrition care needs of patients newly diagnosed with type 2 diabetes: a need for open communication and patient-focussed consultations.

Patients who are newly diagnosed with type 2 diabetes mellitus (T2DM) commonly attempt to modify their dietary intake after receiving nutrition care from primary health professionals. Yet, adherence to dietary recommendations is rarely sustained and factors influencing adherence are poorly understood. This study explored T2DM patients' experiences of dietary change and their views on how primary health professionals can best support long-term maintenance of dietary change. A purposive sample of 10 individuals recently diagnosed with T2DM participated in three individual semi-structured qualitative telephone interviews: at baseline, then at 3 and 6 months after recruitment. Interview questions were modified from the initial interview in order to investigate emerging findings. A two-step data analysis process occurred through content analysis of individual interviews and meta-synthesis of findings over time. Participants initially made wide-ranging attempts to improve dietary behaviours, but most experienced negative emotions from the restraint required to maintain a healthy diet. Participants felt confused by the conflicting advice received from health professionals and other sources such as friends, family, internet and diabetes organisations. Participants frequently reported feeling rushed and not heard in consultations, resulting in limited ongoing engagement with primary healthcare services. These findings suggest that there is opportunity for primary health professionals to enhance the dietary support provided to patients by: acknowledging the challenges of sustained improvements in dietary intake; open communication; and investing in patient relationships through more patient-focussed consultations.

Political Challenges in Complex Place-Based Health Promotion Partnerships: Lessons From an Exploratory Case Study in a Disadvantaged Area of Queensland, Australia.

Settings-based health promotion involving multiple strategies and partners is complex, especially in disadvantaged areas. Partnership development and organizational integration are examined in the literature; however, there is more to learn from the examination of practice stakeholders' experience of intersectoral partnership processes. This case study examines stakeholder experiences of challenges in new partnership work in the context of a culturally diverse and socioeconomically disadvantaged region in Queensland, Australia. Health promotion staff and community representatives participated in interviews and focus groups, and the thematic analysis included observations and documentary analyses. Our findings highlight the retrogressive influence of broader system dynamics, including policy reform and funding changes, upon partnership working. Partnership enablers are disrupted by external political influences and the internal politics (individual and organizational) of health promotion practice. We point to the need for organization level commitment to a consistent agreed vision specifically accounting for place, as a cornerstone of intersectoral health promotion partnership resilience. If organizations from diverse sectors can embed a vision for health that accounts for place, complex health promotion initiatives may be less vulnerable to broader system reforms, and health in all policy approaches more readily sustained.

Using Avoidable Admissions to Measure Quality of Care for Cardiometabolic and Other Physical Comorbidities of Psychiatric Disorders: A Population-Based, Record-Linkage Analysis.

OBJECTIVE: Quality of care for comorbid physical disorders in psychiatric patients can be assessed by the number of avoidable admissions for ambulatory care sensitive (ACS) conditions. These are admissions for physical conditions that, with appropriate primary care, should not require inpatient treatment. Avoidable admissions for ACS conditions feature prominently in Australia's National Health Performance Framework and have been used to assess health care provision for marginalized groups, such as Indigenous patients or those of lower socioeconomic status. They have not been applied to people with mental illness. METHODS: A population-based, record-linkage analysis was used to measure ACS admissions for physical disorder in psychiatric patients of state-based facilities in Queensland, Australia, during 5 years. RESULTS: There were 77 435 males (48.0%) and 83 783 females (52%) (total n = 161 218). Among these, 13 219 psychiatric patients (8.2%) had at least 1 ACS admission, the most common being for diabetes (n = 6086) and angina (n = 2620). Age-standardized rates were double those of the general population. Within the psychiatric group, and after adjusting for confounders, those who had ever been psychiatric inpatients experienced the highest rates of ACS admissions, especially for diabetes. CONCLUSIONS: In common with other marginalized groups, psychiatric patients have increased ACS admissions. Therefore, this measure could be used as an indicator of difficulties in access to appropriate primary care in Canada, given the availability of similar administrative data.

Consensus building to improve the physical health of people with severe mental illness: a qualitative outcome mapping study.

BACKGROUND: The poor physical health of people with severe mental illness (SMI) is often attributed to lifestyle, disease-related medication side effects and disparate provision of healthcare. The complexity and inexact nature of this issue prohibits the identification of a clear and concise causal pathway, which in turn leads to uncertainty and imprecision about the most appropriate action to address the problem. One proposed solution is to integrate care across multiple organisations and sectors through collaborative processes. The objective of this study was to identify collective pathways of action that were consensually developed and which could be initiated by clinicians to improve the physical health of people with severe mental illness. METHODS: Eighteen participants from a service catchment area in Australia were involved in a consensus-building workshop. This resulted in participants identifying and committing to a range of collaborative actions and processes to improve the physical health of people with severe mental illness. Consensus building was combined with an outcome mapping process, which has previously been used to facilitate health system integration. Data from the consensus-building workshop were thematically analysed and used to create an outcome map. RESULTS: Participants identified that accessible, continuous, holistic, consumer-driven, recovery-oriented care was required if improved physical health of people with SMI were to be achieved. However, this all-encompassing care was dependant on a wide-ranging philosophical shift in two areas, namely societal stigma and the dominance of pharmacological approaches to care. Participants believed that this shift was contingent on the attitude and behaviours of healthcare professionals and would require an inclusive, networked approach to care delivery and maximal utilization of existing funding. CONCLUSIONS: Rarely do multiple stakeholders from different sectors within the healthcare system have the opportunity to come together and create a collective vision for improving the health of a specific population in a defined area. We used a consensus building approach to generate solutions, actions and goal statements, which were then used to create a visual map that provided a purpose and signposts for action, thereby maximising the potential for cohesive action across sectors.

Breaking traditions of practice: workforce challenges in implementing disability service standards within purpose-built accommodation for younger adults.

UNLABELLED: Inadequate community housing and support for adults under 65 years with complex health needs often leads to residential aged care placement. In 2006, Australian government authorities funded a range of supported housing alternatives for younger adults requiring access to 24-hour support including the Integrated Living Model (ILM). The ILM provided purpose-built accommodation for 10-20 people and represented a change in practice from traditional 24/7 nursing care toward a more holistic, individualised approach. AIM: Examine workforce challenges in implementing disability service standards (DSS) within an ILM. METHOD: Thematic Analysis of workforce practices was conducted by coding staff interviews (n = 20) against the prevailing DSS. RESULTS: Emerging challenges identified against each standard were: expectation management; coordination; client expertise; blurred boundaries; role confusion; valued status beyond client; unclear practice boundaries; multilayered communication; reflective practices; and mixed service model responses. CONCLUSION: This ILM setting requires workforce development in rights-based practice, personalisation and effective communication. Key paradigm shifts are also recommended.

Responding to health care complexity: suggestions for integrated and interprofessional workplace learning.

This report highlights complexity in health care and the relevance of integrated and interprofessional care and learning. It is proposed that appropriate workforce training in response to complexity should be contextually relevant and workplace integrated, and should focus on building interprofessional capability for reflective practice and critical thinking. This training should be interprofessional and foster systems thinking. It is suggested that the World Health Organization's International Classification of Functioning, Disability and Health (ICF) is a useful integrating framework.

Active steps towards a healthier life for people with severe mental illness: a qualitative approach to understanding the potential for implementing change.

OBJECTIVE: Our health systems are failing to provide optimal physical care for people with severe mental illness. To address this gap, Queensland Health and General Practice Queensland in partnership developed a comprehensive package of guidelines and health messages. However, guidelines alone are likely to be inadequate motivators of change. The objective of this research was to qualitatively explore key stakeholders' expectations about the implementation of guidelines, with the purpose of identifying interventions to support practice change. METHOD: Participants wer recruited from the partnership governance committee. A semistructured interview guide was used to gather data. Using grounded-theory techniques, the data were analysed to identify key themes. RESULTS: All stakeholders agreed that the purpose of developing comprehensive guidelines and health messages was to achieve change through innovation and the promotion of early intervention, reduction of avoidable admissions and sectoral integration. However, existing structures within the system were considered to be insurmountable barriers. CONCLUSION: Key stakeholders sought broader change than just guidelines and health messages developed by the partnership focussed specifically on awareness-raising about the physical care of people with severe mental illness. However, there was no clear consensus as to what that change should be. This mismatch between the goals and actions of such a large-scale initiative is problematic. Suggestions are made about how to address change.

How does care coordination provided by registered nurses "fit" within the organisational processes and professional relationships in the general practice context?

AIM: The aim of this study was to develop understanding about how a registered nurse-provided care coordination model can "fit" within organisational processes and professional relationships in general practice. BACKGROUND: In this project, registered nurses were involved in implementation of registered nurse-provided care coordination, which aimed to improve quality of care and support patients with chronic conditions to maintain their care and manage their lifestyle. METHOD: Focus group interviews were conducted with nurses using a semi-structured interview protocol. Interpretive analysis of interview data was conducted using Normalization Process Theory to structure data analysis and interpretation. RESULTS: Three core themes emerged: (1) pre-requisites for care coordination, (2) the intervention in context, and (3) achieving outcomes. Pre-requisites were adequate funding mechanisms, engaging organisational power-brokers, leadership roles, and utilising and valuing registered nurses' broad skill base. To ensure registered nurse-provided care coordination processes were sustainable and embedded, mentoring and support as well as allocated time were required. Finally, when registered nurse-provided care coordination was supported, positive client outcomes were achievable, and transformation of professional practice and development of advanced nursing roles was possible. CONCLUSION: Registered nurse-provided care coordination could "fit" within the context of general practice if it was adequately resourced. However, the heterogeneity of general practice can create an impasse that could be addressed through close attention to shared and agreed understandings. Successful development and implementation of registered nurse roles in care coordination requires attention to educational preparation, support of the individual nurse, and attention to organisational structures, financial implications and team member relationships.

Disability Research in Australia: Deciding to Be a Research Participant and the Experience of Participation.

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.

Spanning boundaries and creating strong patient relationships to coordinate care are strategies used by experienced chronic condition care coordinators.

People with complex chronic conditions frequently need to navigate their own way through and around a fragmented and siloed health care system. Care coordination is a defining principle of primary care and is frequently proposed as a solution to this problem. However, care coordination requires more time and effort than primary care physicians alone have the capacity to deliver. Although registered nurses (RNs) are skilled team members who can be included in the delivery of coordinated patient care, any model of care coordination that involves RNs needs to fit within the existing health care delivery system. In this study, which used qualitative techniques based on grounded theory and included face-to-face interviews and open coding and theoretical sampling until data saturation was achieved, and which was one component of a larger action research study, we aimed to gain an understanding of the difference between usual chronic condition care and the work of chronic condition care coordination. The researchers interviewed general practitioners and RNs from various general practice sites who were actively coordinating care. Four unique processes were found to define care coordination implementation, namely: (1) moving beyond usual practice by spanning boundaries; (2) relationship-based care; (3) agreed roles and routines among relevant parties; and (4) committing to chronic condition care coordination. The findings suggested that existing professional and organisational cultures required negotiation before care coordination could be integrated into existing contexts. The challenge, however, seems to be in acknowledging and overcoming professional practice boundaries that define existing care through reflective practice and shared resourcing.

Entering into a system of care: A qualitative study of carers of older community-dwelling Australians.

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.

Exploring the role of nurses in inpatient rehabilitation care teams: A scoping review.

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 with care complexity: Factors related to discharge delays of hospitalised people with disability.

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.