Preparedness and training needs of a regional public mental health service to support people with intellectual disability.

OBJECTIVE: To explore the preparedness and training needs of a regional public mental health workforce to support people with intellectual disability and mental ill health. SETTING AND PARTICIPANTS: Staff from a regional public mental health service in Victoria, Australia. DESIGN: A mixed-methods design comprised a survey, interviews and a focus group to collect data about staff attitudes, confidence, education and professional development regarding supporting people with intellectual disability and mental ill health. Descriptive and thematic analyses were used. RESULTS: Data from 31 survey respondents, seven interviews and one focus group were analysed. Survey descriptive analyses showed participants believed treating people with intellectual disability was part of their role but reported areas of low confidence along with insufficient education and training in intellectual disability mental health. Thematic analyses from interviews showed that underpinning confidence, education and training were the themes (1) need for flexibility, such as having more time and (2) solutions but with challenges, such as limited opportunity to upskill and availability of experts. A need for collaborative problem-solving where staff share skills and information to work towards person-centred solutions was a key theme from the focus group analysis. CONCLUSION: Professional development in intellectual disability mental health is required for the regional public mental health workforce but needs to account for the challenges experienced and reflect how teams function. Exploration of described preparedness offered a possible learning approach informed by workforce members. Collaborative learning approaches to supporting people with intellectual disability and mental ill health are suggested.

Strategies for Accessible Breast Screening for People With Intellectual Disability.

INTRODUCTION: People with intellectual disability are less likely to participate in breast screening than people without intellectual disability. They experience a range of barriers to accessing breast screening, however, there is no consensus on strategies to overcome these barriers. Our objective was to reach consensus on the strategies required for accessible breast screening for people with intellectual disability. METHODS: Fourteen experts participated in a modified on-line Delphi that used Levesque's model of health care access as the theoretical framework. At the end of each round descriptive and thematic analyses were completed. Data was then triangulated to determine if consensus was reached. RESULTS: After 3 rounds, 9 strategies were modified, 24 strategies were added and consensus was reached for 52 strategies across the 5 dimensions of access. Key areas of action related to (i) decision making and consent, (ii) accessible information, (iii) engagement of peer mentors, (iv) service navigators, and (v) equipping key stakeholders. CONCLUSIONS: The resulting strategies are the first to articulate how to make breast screening accessible and can be used to inform health policy and quality improvement practices.

Barriers to healthcare for Australian autistic adults.

LAY ABSTRACT: This study looked at how Australian autistic and non-autistic adults experience barriers to healthcare. We asked autistic and non-autistic adults to complete the Barriers to Healthcare Checklist Short-Form (BHC). We analysed data from 263 autistic adults and 70 non-autistic adults. We found that autistic adults experienced more barriers to healthcare than non-autistic adults. Gender diversity, feeling more anxious, having greater disability and feeling unsatisfied with social support contributed to barriers to healthcare in autistic participants. We recommend interventions such as developing and implementing a national action plan, similar to the National Roadmap for Improving the Health of People with Intellectual Disability (2021) to reduce barriers and address unmet healthcare needs of Australian autistic adults. We also recommend working with autistic adults to develop new policies and strategies, implementing environmental adaptations to health care facilities, and increasing Autism education opportunities for health professionals to address gaps in knowledge.

What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis.

OBJECTIVES: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. DESIGN, SETTING AND PARTICIPANTS: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. RESULTS: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. CONCLUSIONS: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. PATIENT AND PUBLIC CONTRIBUTION: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.

What do healthcare staff think about the quality and safety of care provided to children and young people with an intellectual disability? A qualitative study using the framework method of analysis.

OBJECTIVE: To elicit patient safety issues pertaining to children and young people with intellectual disability in hospital from healthcare staff perspectives. This follows a previous paper of parent interviews of patient safety experiences of their child in hospital. DESIGN: Qualitative study. SETTING: We conducted semi-structured interviews and focus groups of staff of tertiary children's hospitals based on the domains of the Patient Safety Education Framework and using the framework methodology for data analysis. PARTICIPANTS: There were 29 female and 7 male staff aged between 27 and 70 years from a range of departments and specialties including ancillary staff. INTERVENTION: Questions based on the patient safety framework were developed from consultation with parents, researchers and clinicians exploring staff views and experiences of safety and quality care of these children in hospital. During April 2021 to May 2022, 22 interviews and 3 focus groups were conducted of staff who have had experience caring for children and young people with intellectual disability in the last 12 months in the hospital. RESULTS: Key themes elicited include Definition of Safety, Need to consider additional vulnerabilities of children and young people with intellectual disability in hospital, Communication is key to safe care, Parent and family perspectives on safe care, Management challenges compromising safety and Service system gaps in preventing, identifying and managing risk. CONCLUSIONS: Staff need to consider additional vulnerabilities, mitigate negative attitudes and biases towards better engagement and relationships with parents, children and young people of this population. Improvement of current systems that prevent the identification, prevention and management of risk and safety issues for this population need to be undertaken. Future developments include combining data from parent interviews, academic and grey literature in developing safety competencies in this population for training and education of staff across the health system.

Towards the measurement of autistic burnout.

LAY ABSTRACT: Autistic burnout has been talked about by autistic adults for some time on blogs and in social media. Now, research describes fatigue, exhaustion and other related symptoms experienced by autistic people. We need new ways to help identify autistic burnout. In this study, we tested a new questionnaire called the AASPIRE Autistic Burnout Measure, and we investigated things that are linked to worse autistic burnout. We also trialled a group of Autistic Burnout Severity Items that we made. Working with an autistic researcher, we made the Autistic Burnout Severity Items based on published definitions of autistic burnout. Autistic adults (n = 141) who had experienced autistic burnout completed an online survey. We found that autistic burnout was connected to masking and depression. The Autistic Burnout Measure tool was associated with depression but not with masking. It was not very accurate in telling apart participants who were currently experiencing burnout versus those who were reporting on their past experience. The Autistic Burnout Severity Items might have problems with subscales adding together to measure autistic burnout. More work is needed on how to measure autistic burnout. Our research and other recent studies show autistic people experience a combination of exhaustion, withdrawal and problems with their concentration and thinking. Burnout seems to be linked to the stress experienced by autistic people in their daily lives. We need more research to understand the difference between autistic burnout and other conditions and experiences. We need to develop assessment tools that can help identify this burnout.

Confirming the nature of autistic burnout.

LAY ABSTRACT: Autistic burnout is something autistic people have been talking about for a while (see #AutBurnout and #AutisticBurnout on social media). Recently, researchers published two different definitions of autistic burnout. We wanted to test these definitions. We wanted to confirm the duration and frequency of autistic burnout. That is, how long and how often do people get autistic burnout? We surveyed 141 autistic adults who had autistic burnout. We used descriptive statistics, content analysis and reflexive thematic analysis to analyse the survey responses. Autistic adults strongly agreed with the definition published by Higgins et al. How long and how often people get autistic burnout was not clear. Participants told us they have both short and long episodes. Participants told us that autistic burnout leads to exhaustion. They needed to withdraw from being with other people. They needed to stay away from autism unfriendly places. Many had been misdiagnosed as having depression, anxiety, bipolar disorder, borderline personality disorder or other conditions. We need increased awareness of autistic burnout. Autistic people need more help. More research is needed, we need to have bigger studies to understand autistic burnout.

Reported clinical incidents of children with intellectual disability: A qualitative analysis.

AIM: To qualitatively explore reported clinical incidents of children with intellectual disability aged 0 to 18 years. METHOD: A secondary qualitative evaluation using latent content analysis was used on retrospective hospital incident management reporting data (1st January-31st December 2017) on 1367 admissions for 1018 randomly selected patients admitted to two tertiary children's hospitals in New South Wales, Australia. Sex and age at admission in children with and without intellectual disability: 83 (43.7%) versus 507 (43.1%) females and 107 (56.3%) versus 670 (56.9%) males, p=0.875; median age 3 years (0-18y) versus 4 years (0-18y), p=0.122. Of these, 44 patient safety incident reports for children with intellectual disability (sex, SD, and range) and 167 incident reports for children without intellectual disability (sex, SD, and range) were found and analysed. RESULTS: Ten themes were synthesized from the data and represented the groups with and without intellectual disability. Children with intellectual disability had a significantly higher proportion of care issues identified by their parents. They also had higher rates of multiple reported clinical incidents per admission compared to children without intellectual disability. INTERPRETATION: Mechanisms to advocate and raise patient safety issues for children with intellectual disability are needed. Partnerships with parents and training of staff in reporting clinical incidents for this population would enhance the embedding of reasonable adaptations into incident management systems for ongoing monitoring and improvement. WHAT THIS PAPER ADDS: Children with intellectual disability experienced multiple patient safety incidents per admission compared to children without intellectual disability. Children with intellectual disability had significantly increased rates of parent-identified incidents. Issues with medication, communication, delays in diagnosis and treatment, and identification of deterioration were noted.

Responding to safe care: Healthcare staff experiences caring for a child with intellectual disability in hospital. Implications for practice and training.

BACKGROUND: Children with intellectual disability are vulnerable to adverse events in hospital due to limited staff skills and system safeguards. METHOD: A systematic review of the literature explored healthcare staff (HCS) experiences in providing care for children and young persons with intellectual disability in hospital using thematic analysis. RESULTS: Eleven of the 735 publications extracted identified the following themes: distress, communication, partnerships, identification, training and education and optimising care. Consistent findings suggest that HCS feel unskilled in providing care for the child with intellectual disability in hospital settings. HCS recognised the role of parents as experts of their child but also feel unsettled when challenged by them. Skills in communicating with the child, developing partnerships with parents, having identification systems to plan for reasonable adjustments was key to improving care. CONCLUSIONS: Organisational advocacy, practical skills training in identification, reasonable adjustments and improved attitudes are important for HCS to provide safe and quality care.

Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout.

LAY ABSTRACT: Autistic burnout has been commonly described in social media by autistic people. There is little mention of autistic burnout in the academic literature. Only one recent study has used interviews and reviews of social media descriptions to try to understand autistic burnout. Anecdotally, autistic burnout is a very debilitating condition that reduced people's daily living skills and can lead to suicide attempts. It is suggested that autistic burnout is caused by the stress of masking and living in an unaccommodating neurotypical world. We wanted to create a definition of autistic burnout that could be used by clinicians and the autism community. We used the Grounded Delphi method, which allowed autistic voice to lead the study. Autistic adults who had experienced autistic burnout were considered as experts on the topic, in the co-production of this definition. The definition describes autistic burnout as a condition involving exhaustion, withdrawal, problems with thinking, reduced daily living skills and increases in the manifestation of autistic traits. It is important for future research that there is a specific description of the condition. In practice, it is important for clinicians to be aware that autistic burnout is different from depression. Psychological treatments for depression potentially could make autistic burnout worse. Further awareness of autistic burnout is needed, as well as further research to prove this condition is separate from depression, chronic fatigue and non-autistic burnout.

Potentially preventable hospitalisations of people with intellectual disability in New South Wales.

OBJECTIVE: To determine rates of potentially preventable hospitalisation of people with intellectual disability in New South Wales, and compare them with those for the NSW population. DESIGN: Retrospective cohort study. SETTING: Potentially preventable hospitalisations in NSW, as defined by the National Healthcare Agreement progress indicator 18, 1 July 2001 - 30 June 2015. PARTICIPANTS: Data collected in a retrospective data linkage study of 92 542 people with intellectual disability in NSW; potentially preventable hospitalisations data for NSW published by HealthStats NSW. MAIN OUTCOME MEASURES: Age-adjusted rates of potentially preventable hospitalisation by group (people with intellectual disability, NSW population), medical condition type (acute, chronic, vaccine-preventable), and medical condition. RESULTS: The annual age-standardised rate for people with intellectual disability ranged between 5286 and 6301 per 100 000 persons, and for the NSW population between 1278 and 1511 per 100 000 persons; the rate ratio (RR) ranged between 3.5 (95% CI, 3.3-3.7) in 2014-15 and 4.5 (95% CI, 4.2-4.9) in 2002-03. The difference was greatest for admissions with acute (RR range: 5.3 [95% CI, 4.9-5.7] in 2014-15 to 8.1 [95% CI, 7.4-8.8] in 2002-03) and vaccine-preventable conditions (RR range: 2.1 [95% CI, 1.6-3.0] in 2007-08 to 3.4 [95% CI, 2.2-5.2] in 2004-05). By specific condition, the highest age-standardised rate was for admissions with convulsions and epilepsy (all years, 2567 per 100 000 population; v NSW population: RR, 22.2; 95% CI, 21.3-23.1). CONCLUSION: Age-standardised rates of potentially preventable hospitalisation are higher for people with intellectual disability than for the general population. The reasons for these differences should be investigated, and strategies for averting potentially preventable hospitalisation developed.

Expert consensus on the operation of an adult tertiary intellectual disability mental health service in New South Wales, Australia.

OBJECTIVE: To identify and reach consensus on the priorities and operation of an adult tertiary intellectual disability mental health service in New South Wales, Australia. METHOD: An online Delphi consultation was conducted with 25 intellectual disability mental health experts. RESULTS: Participants agreed that the service should involve a multidisciplinary team and accept people with an intellectual disability aged over 15 years with complex needs and/or atypical presentations. Agreed service roles included short-term assessment, diagnosis and treatment, providing high-level clinical advice, and capacity building. Endorsed principles and practical ways of working align with existing guidelines. CONCLUSIONS: This study describes experts' views on how an adult tertiary intellectual disability mental health service should operate in New South Wales. Further consultation is needed to determine the views of people with an intellectual disability and mental health staff.

Subspecialty training pathways in intellectual and developmental disability psychiatry in Australia and New Zealand: current status and future opportunities.

OBJECTIVES: This study aimed to examine the training experiences of and determine capacity to train future Australian and New Zealand psychiatrists working in intellectual and developmental disability mental health. METHODS: Australian and New Zealand psychiatrists with expertise or interest in intellectual and developmental disability mental health completed an online survey detailing their training pathway, support for subspecialty training and capacity to provide rotations in this area. RESULTS: Psychiatrists (n=71) indicated the most common reasons they started practicing in intellectual and developmental disability mental health, and these included seeing people with intellectual or developmental disability in a service in which they worked, or personal experience with intellectual or developmental disability. Compared to those trained overseas, psychiatrists trained in Australia or New Zealand had lower ratings of the sufficiency of education received in intellectual and developmental disability mental health. Of the total respondents, 80% supported the development of subspecialty training. Augmentation of intellectual and developmental disability mental health content in the intermediate stage of training was also strongly supported. Participants identified 80 potential six-month training rotations in this area. CONCLUSIONS: Psychiatrists working in intellectual and developmental disability mental health strongly support enhancements to intellectual or developmental disability training, including the development of subspecialty training, and can identify potential training capacity if such subspecialty training was developed.

Clinical capacity of Australian and New Zealand psychiatrists who work with people with intellectual and developmental disabilities.

OBJECTIVE: To describe the characteristics and clinical capacity of Australian and New Zealand psychiatrists working in intellectual and developmental disability mental health (IDDMH). METHOD: Consultant psychiatrists (n=71) with an interest or expertise in IDDMH completed an online survey about their roles, experience and time spent in intellectual developmental disability (IDD)-related activities. RESULTS: Psychiatrists had worked in IDDMH for a median of 11.34 years and half (53.5%) reported expertise in the area. One-fifth of psychiatrists reported IDDMH as their main area of practice. The majority of respondents (85.1%) reported that they were working clinically with people with IDD. Respondents practicing clinically worked a median of 8 hours in clinical and 3 hours in non-clinical IDD-related work per week. CONCLUSIONS: Surveyed psychiatrists had considerable experience in IDDMH. However, their work in IDDMH represented a relatively small proportion of their overall work hours, and a minority of respondents were responsible for a large proportion of clinical work. Exploring ways to broaden capacity is crucial to ensuring the mental health needs of people with IDD are met.

Building workforce capacity in Australia and New Zealand: a profile of psychiatrists with an interest in intellectual and developmental disability mental health.

OBJECTIVE:: To describe the characteristics of psychiatrists working in the area of intellectual and developmental disability mental health (IDDMH) across Australia and New Zealand. METHODS:: A secondary analysis of data collected by the Royal Australian and New Zealand College of Psychiatrists 2014 workforce survey. Characteristics of the IDDMH workforce ( n=146 psychiatrists) were compared with those of the broader psychiatry workforce ( n=1050 psychiatrists). RESULTS:: The IDDMH workforce were more likely than the broader psychiatry workforce to be working across both the public and private health sectors, be engaged in outreach work, endorse specialty practice areas pertinent to IDDMH, treat younger patients and work more clinical hours per week. Part-time status and retirement plans of the IDDMH workforce matched those of the broader psychiatry workforce. CONCLUSIONS:: While some elements of the IDDMH workforce profile suggest this workforce is tailored to the needs of the population, the potential shortage of IDDMH psychiatrists highlights the need for the development of a specific training programme and pathway in this area.

What makes generalist mental health professionals effective when working with people with an intellectual disability? A family member and support person perspective.

BACKGROUND: Generalist mental health professionals are inadequately equipped to meet the rights of people with intellectual disability. A better understanding of the attributes of effective professionals may assist in the development of workforce capacity in this area. METHODS: Twenty-eight family/support persons of people with intellectual disability participated in four focus groups. Thematic analysis was undertaken applying the Intellectual Disability Mental Health Core Competencies Framework. RESULTS: Participants described attributes that aligned with current professional expectations such as working together and new attributes such as differentiating between behaviour and mental health. An unexpected finding was the need for professionals to be able to infer meaning by interpreting multiple sources of information. Participants also wanted professionals to acknowledge their professional limitations and seek professional support. CONCLUSION: Family/support persons identified a range of attributes of effective mental health professionals to support people with intellectual disability. Further research is necessary, particularly from the perspective of people with intellectual disability.

Establishing core mental health workforce attributes for the effective mental health care of people with an intellectual disability and co-occurring mental ill health.

BACKGROUND: People with intellectual disability experience high rates of mental ill health but multiple barriers to access to quality mental health care. One significant barrier to access is a generalist mental health workforce that lacks capacity, and consensus on what constitutes core workforce competencies in this area. As such, the first step in developing a comprehensive strategy that addresses these barriers is to define the core mental health workforce attributes. METHODS: Thirty-six intellectual disability mental health experts from across Australia participated in a modified online Delphi which aimed to reach consensus on the core attributes required of the generalist mental health workforce. At the end of each Delphi round, descriptive analyses and thematic analyses were completed. RESULTS: Consensus was reached among the participants for 102 attributes across 14 clinical domains. The results highlighted specific attributes in all areas of clinical practice, especially for communication (e.g., utilizes assistive communication technology), assessment (e.g., assess contributing factors to behaviours) and intervention (e.g., uses integrative interventions). CONCLUSION: A comprehensive strategy is required to facilitate the generalist mental health workforce to obtain these attributes.

Validation of a clinical leadership qualities framework for managers in aged care: a Delphi study.

AIMS AND OBJECTIVES: To establish validity of a clinical leadership framework for aged care middle managers (The Aged care Clinical Leadership Qualities Framework). BACKGROUND: Middle managers in aged care have responsibility not only for organisational governance also and operational management but also quality service delivery. There is a need to better define clinical leadership abilities in aged care middle managers, in order to optimise their positional authority to lead others to achieve quality outcomes. DESIGN: A Delphi method. METHODS: Sixty-nine experts in aged care were recruited, representing rural, remote and metropolitan community and residential aged care settings. Panellists were asked to rate the proposed framework in terms of the relevance and importance of each leadership quality using four-point Likert scales, and to provide comments. Three rounds of consultation were conducted. The number and corresponding percentage of the relevance and importance rating for each quality was calculated for each consultation round, as well as mean scores. Consensus was determined to be reached when a percentage score reached 70% or greater. RESULTS: Twenty-three panellists completed all three rounds of consultation. Following the three rounds of consultation, the acceptability and face validity of the framework was confirmed. CONCLUSIONS: The study confirmed the framework as useful in identifying leadership requirements for middle managers in Australian aged care settings. The framework is the first validated framework of clinical leadership attributes for middle managers in aged care and offers an initial step forward in clarifying the aged care middle manager role. RELEVANCE TO CLINICAL PRACTICE: The framework provides clarity in the breadth of role expectations for the middle managers and can be used to inform an aged care specific leadership program development, individuals' and organisations' performance and development processes; and policy and guidelines about the types of activities required of middle managers in aged care.