Disability Support Workers Research Articles

Unpacking how trust, communication and flow interact to sustain quality relationships between disabled people, family and support workers: a realist qualitative study

Purpose Many disabled people require support workers to complete personal care, daily tasks and participate in life roles. Due to the intimate nature of community disability support in domestic environments, understanding what facilitates positive relationships is paramount. We examined the intricate interplay of context and mechanisms that drive positive relationship outcomes for disabled people, their family members and support workers. Methods A realist-informed, participatory methodology involving three participant groups: disabled people, family members, and disability support workers. Results Sixteen participants participated in two workshops per group (5 disabled people, 5 family members, and 6 disability support workers). All three participant groups prioritised three key generative mechanism processes involved in positive relationship outcomes: (1) having clear communication, (2) building trust, and (3) developing a sense of flow. We describe how each mechanism manifested in a unique way for each group, and also how the activation of each mechanism was influenced by a dynamic resources/tensions balance specific to each group. Conclusion We describe the interaction between three mechanism processes involved in triadic relationships between disabled people, family members, and support workers. Attention is now required to explore strategies to negotiate the resource/tension balance particular to each group.

The Disability Royal Commission on National Disability Insurance Scheme (NDIS) workforce issues: avoiding the root causes?

Workforce issues are central to the changes necessary to create safer and higher-quality services for people with intellectual disabilities. This article examines the Disability Royal Commission’s (the Commission) workforce recommendations relating to the disability services sector, which has been beset by chronic workforce problems since the introduction of the National Disability Insurance Scheme (NDIS). We describe the rich evidence in the Commission’s Final Report and its analysis of key issues such as work value, disability worker qualifications, training, and worker registration. Many of these issues are especially relevant to people with intellectual disabilities, who need sophisticated, highly skilled support provided by experienced workers, characteristics that can be scarce in a high-turnover industry with persistent labour shortages and almost no barriers to entry. However, the Commission ultimately backs away from making recommendations on the most controversial issues, including the price-setting matrix for disability support services, known as the Disability Support Worker Cost Model. Unchanged, this will continue to constrain the sector’s ability to create high-quality working environments conducive to continuous learning that will support people with intellectual disabilities in the way they want to be supported.

Designing the Food and Lifestyle Information Program (FLIP) culinary nutrition intervention for adults with mild-to-moderate intellectual disability.

People with intellectual disability have diverse needs and experience higher rates of diet-related chronic disease such as type 2 diabetes compared to people without disability. However, they are infrequently included in development and implementation of interventions to address diet-related chronic disease. The present study describes the process to plan, develop and refine the Food and Lifestyle Information Program (FLIP) culinary nutrition intervention for adults with mild-to-moderate intellectual disability. The project was initiated by a disability service provider and was guided by the Cook-Ed™ model and inclusive research principles. Initially the disability service provider and academic research team members co-designed pre-program consultation and pilot studies, and draft program resources. Pre-program consultation explored paid disability support worker (n = 10) perceptions of cooking and food skills, nutrition priorities and optimal program format, which guided further program drafting. Program resources and pilot study design were further developed and refined with co-researchers with lived experience of intellectual disability who attended a pre-pilot and then pilot study sessions as remunerated co-facilitators. Key characteristics of the FLIP intervention arising from pre-program consultation included providing cooking task instruction in small steps, enabling participant choice in program activities, promoting an inclusive and social atmosphere, and providing paper-based resources. FLIP intervention co-design was enabled through ongoing input from the disability service provider and people with lived experience of intellectual disability. Evaluation of FLIP feasibility, acceptability and preliminary effectiveness to improve diet-related health is underway.

Training and supervision of disability support workers: Perspectives of NDIS participants using unregistered providers

AbstractTraining and supervision of disability support workers (DSWs) has, in most developed countries, been the primary means of supporting quality of service, adequate worker skill and prevention of violence, abuse, neglect and exploitation of both service users and DSWs. However, in Australia, there is no requirement for DSWs to obtain a minimum level qualification. This paper examines service user perception and decision making in relation to training and supervision of their DSWs. We report findings from semi‐structured interviews with 30 National Disability Insurance Scheme (NDIS) participants. These findings suggest that users of disability services do not universally prioritise formal DSW supervision and training. Many interviewees described that being able to train and supervise DSWs themselves achieved better support outcomes and reduced power differentials in receipt of services. We discuss the implications of these findings in the context of recent policy reviews and the need to refocus safeguarding schemes on providing people with disability with the tools they need to ensure the quality and safety of their services.

VR interventions aimed to induce empathy: a scoping review

To assess the methods and outcomes of virtual reality (VR), interventions aimed at inducing empathy and to evaluate if VR could be used in this manner for disability support worker (DSW) training, as well as highlight areas for future research. The authors conducted a scoping review of studies that used VR interventions to induce empathy in participants. We searched three databases for articles published between 1960 and 2021 using “virtual reality” and “empathy” as key terms. The search yielded 707 articles, and 44 were reviewed. VR interventions largely resulted in enhanced empathy skills for participants. Most studies agreed that VR’s ability to facilitate perspective-taking was key to inducing empathy for participants. Samples were often limited to the context of healthcare, medicine, and education. This literature provides preliminary evidence for the technology’s efficacy for inducing empathy. Identified research gaps relate to limited studies done, study quality and design, best practice intervention characteristics, populations and outcomes of interest, including lack of transfer and data across real-world settings.

Work stress and professional quality of life in disability support workers: The mediating role of psychological flexibility

ABSTRACT Background This study aimed to explore perceived work stress and its association with burnout, compassion fatigue, and compassion satisfaction and the mediating effect of psychological flexibility on these relationships. Method Two hundred and fifty-one disability support workers across Australia reported on work stress, psychological flexibility, burnout, compassion fatigue, and compassion satisfaction through an online anonymous survey. Results Perceived work stress was found to have a significant relationship with burnout, compassion fatigue, and compassion satisfaction. Psychological flexibility had a significant mediating effect on all three relationships. Conclusion These results highlight the role that psychological flexibility has in response to work stress and the development of burnout, compassion fatigue, and compassion satisfaction in disability support workers.

“Thin markets”: Recruitment and retention of disability staff to support effective post‐parental care planning in rural Australia

AbstractThe life expectancy of persons with intellectual disability is increasing, and this is often occurring concurrently with the aging of their long‐term parental carers. Research in both Australia and around the world indicates that proactive post‐parental care planning is not widely implemented, and transitions primarily happen suddenly following a personal crisis for the primary caregiver. Little focus in Australia has been placed on identifying the barriers that inhibit post‐parental care planning in rural areas, specifically in the context of the newly implemented National Disability Insurance Scheme. This paper examines the factors that limit disability services and their staff in supporting successful post‐parental care planning for individuals with intellectual disability and their aging carers in rural South Australia. Small focus groups were conducted with three groups of rural disability support workers using online technologies to assist with the participants' geographic disparity. A semi‐structured interview guide was developed prior to commencement and was used to initiate discussions on key points. A thematic analysis methodological approach was used for data analysis. There were three themes identified through the analysis; Recruitment; Provision of Care; and Retention. The key findings relating to these themes are presented and supported with exemplar quotes. This research proposes three recommendations for policy or practice change: developing a national advertising campaign for new disability staff that positively emphasizes the high‐level skillset need for proactive planning; supporting rural disability providers to collaborate to establish shared teams of staff with expertise in post‐parental care planning; and, using incentive payments to retain staff with these invaluable skillsets in the disability sector.

‘We became their beginning, their middle and their end’

AbstractBackgroundCommunicating with people with severe/profound intellectual disabilities is essential for person‐centred, rights‐based support. Despite a proliferation of research around COVID‐19, there is a dearth of evidence exploring its impact on communication with people with severe/profound intellectual disabilities. This study aimed to explore disability support staff experiences of communicating with people with severe/profound intellectual disabilities through the COVID‐19 pandemic.MethodsA qualitative descriptive study was undertaken. A purposive sample of six disability support staff who supported people with severe/profound intellectual disabilities through the pandemic in four Irish residential services participated in online, semistructured interviews. Data were analysed thematically.FindingsSix themes were generated including unwavering commitment; running on empty; being a safe haven; empathic understanding; heightened sensitivity and new insights. Participants discussed the impact of COVID‐19 on communicating with people they support, the contextual challenges, how these were managed/overcome and new learning that emerged. Although communication challenges did present because of COVID‐19 restrictions, communication remained a priority.ConclusionsDespite the challenges experienced by disability support workers, their unwavering commitment to ensuring the well‐being of people with severe/profound intellectual disabilities was identified. This was a small‐scale qualitative study but highlights areas warranting further research and makes recommendations for practice and service planning.

Towards developing an intervention to support periodic health checks for adults with intellectual and developmental disabilities: Striving for health equity.

Although the Canadian Consensus Guidelines for Primary Care of Adults with Intellectual and Developmental Disabilities recommends conducting periodic health checks in primary care, uptake is lacking. This study seeks to understand factors influencing the conduct of periodic health checks and identify what needs to change to increase them. Qualitative data from five stakeholder groups (adults with intellectual and developmental disabilities, primary care providers, administrative staff, family, disability support workers) was guided by the Behaviour Change Wheel and the Theoretical Domains Framework to identify barriers and 'what needs to change' to support periodic health checks. Stakeholders (n = 41) voiced multiple barriers. A total of 31 common and 2 unique themes were identified plus 33 items 'needing to change'. Despite barriers, stakeholders saw merit in periodic health checks as a preventative and equitable healthcare offering for adults with intellectual and developmental disabilities. Results will inform future intervention development steps.

Lessons from a COVID-19 outbreak in the disability support sector, Australian Capital Territory, August 2021.

People with disability are at higher risk of severe outcomes from SARS-CoV-2 infection. Due to complex client needs and available staffing, disability support providers (DSP) were limited in their ability to mitigate the introduction of SARS-CoV-2 into disability support settings. This report describes the characteristics of a Delta variant outbreak associated with a single DSP in Canberra, Australian Capital Territory (ACT), in August 2021. We calculated attack rates for workplace exposure sites and households, using the number of people present at workplaces and households as the denominator. Thirty confirmed cases were identified, comprised of 13 support workers, six clients, and 11 household and other contacts. The median age of cases was 30.5 years (range 1 to 80 years) and 5 cases (17%) were hospitalised. No cases were admitted to an intensive care unit (ICU) or died. Twenty-two percent of people in close contact with confirmed SARS-CoV-2 cases in this cluster (23/103) subsequently tested positive to SARS-CoV-2. Investigations identified multiple primary cases, with one primary case the likely infection source for at least 17 other cases. Despite the majority being eligible for vaccination, only two cases were fully vaccinated (two doses > 14 days before exposure). The mean secondary attack rate at workplace sites (15% or 12/80 close contacts infected) was lower than the tertiary attack rate (47.8% or 11/23 close contacts infected). The overall risk of contracting SARS-CoV-2 in DSP-related work sites was lower than for household settings (relative risk: 0.42; 95% confidence interval: 0.21-0.82). These findings demonstrate the importance of ongoing collaboration between governments and the disability support sector. Development and delivery of targeted health messaging to people with disability and to disability support workers, regarding infection control in the home setting, and identification of enablers for vaccination, should be the highest priorities from this collaboration.

From the personal and private to the community and public

Abstract This paper reports on the adaptation of Sydney School genre pedagogy’s Teaching Learning Cycle for the design of a workshop that aims to encourage disability support workers and their managers to think more expansively about the people with intellectual disabilities they work with and support. The paper introduces the pedagogy and its theoretical underpinnings as well as the two fields of knowledge that are drawn on in the workshop: person-centred care and positive behaviour support. It then details the design and implementation of the workshops and finishes with some evidence of the workshop’s initial impact on workers and the disability organisation’s support of people living with disability.

Training support workers about the overmedication of people with intellectual disabilities: an Australian pre-post pilot study.

There is evidence that psychotropic medications are overprescribed and overused to manage behaviours of concern for people with intellectual disabilities. Disability support workers and support staff lack education and training on the administration and safety of psychotropic medication use. This study aimed to test the applicability and preliminary efficacy of SPECTROM, an education programme developed in the UK, in an Australian context. The training comprises two parts: Module 1 encompasses psychotropic medications, their use and side effects. Module 2 focuses on non-pharmacological interventions for supporting people with behaviours of concern. Thirty-three participants attended the training course and completed pre-training and post-training surveys on the Psychotropic Knowledge Questionnaire and Management of Aggression and Violence Attitude Scale-Revised at four time points: pre-training, 2weeks, 3months and 5months post-training. Psychotropic Knowledge Questionnaire scores showed statistically significant post-training improvement at all post-training time points (P<0.05). Management of Aggression and Violence Attitude Scale-Revised scores were high at pre-training and did not change significantly at any of the post-training survey time points. A 2-week post-training feedback questionnaire reported 80% agreement that the training programme was appropriate, useful and valid. Only 36% of participants completed questionnaires at all time points. SPECTROM training increased staff knowledge of psychotropic medications, yet loss of participants was high. Further refinement of the applicability of the training for the Australian context and evaluation of the feasibility of implementation, clinical and cost-effectiveness of the programme are required.

Staff perceptions following a training programme about reducing psychotropic medication use in adults with intellectual disability: The need for a realistic professional practice framework.

Adults with intellectual disability are at higher risk of being administered psychotropic medications. The UK-developed SPECTROM (Short-term PsychoEducation for Carers To Reduce Over Medication of people with intellectual disabilities) training programme educates disability support workers on psychotropic medications and alternatives to these medications. Interviews were conducted with 10 participants who took part in the pilot SPECTROM training programme to elicit their views on the programme and its appropriateness in an Australian context. The key theme was 'Need for a psychotropic medication practice framework'. Four sub-themes were Broad satisfaction with the SPECTROM training programme; Disability support workers acknowledging the limitations of their scope of practice; Empowering training through prescriptive and reflective methods and; Need for future mentoring from Multi-Disciplinary Team members in the application of new knowledge. Participants felt that whilst they could improve their knowledge and attitudes surrounding psychotropic medication administration for behaviours of concern through SPECTROM training, a national practice framework is needed to execute its goals at scale.

Political legitimacy and vaccine hesitancy: Disability support workers in Australia

Abstract People with disability are an at-risk group in the COVID-19 pandemic for a range of clinical and socioeconomic reasons. In recognition of this, Australians with disability and those who work with them were prioritized in access to vaccination, but the vaccination targets were not met. In this paper, we analyze qualitative data generated from a survey with 368 disability support workers to identify drivers of COVID-19 vaccination hesitancy and why the implementation of this policy may have experienced challenges. We identify a range of themes within these data but ultimately argue that a major driver of vaccine hesitancy in this group is a mistrust of government and an erosion of employment terms and conditions. Drawing on the policy capacity literature, we argue that the “Achilles’ heel” for the Australian government in this case is the critical policy capacity of political legitimacy. This finding has important implications for where the government needs to increase/build policy capacity, strengthening its efforts and better relating to organizations that can be helpful in terms of developing public health messaging for disability support workers.

The validity and measurement equivalence of a brief safety climate questionnaire across casual and permanent workers

BackgroundSafety climate is an effective leading indicator of safety incidents and accidents. However, frequently safety climate measures are only employed in times of crisis rather than for regular monitoring to identify and remediate safety issues before becoming critical. ObjectiveThis study aimed to validate a 24-item version of the 50-item Nordic Occupational Safety Climate Questionnaire (NOSACQ-50) that was developed for use as a regular monitoring tool. MethodAnalyses undertaken included confirmatory factor analysis (CFA) and assessments of construct validity, external validity, concurrent validity, measurement equivalence, and benchmarking capabilities. CFA to examine external and construct validity included a combined sample of disability support workers and hospitality employees (N = 474), an independent sample of students in casual employment (N = 122), and employees from a vocational education and training (VET) organisation (N = 539). Concurrent validity was assessed by comparing correlations between the 50-item and 24-item versions of the NOSACQ with health and wellbeing outcome variables. External validity of the NOSACQ-24 was further established using the casual student workers and a sample employees from the VET organisation (N = 53). Paired samples t-tests examined the safety climate scores for the 50-item and 24-item measures across all participant samples to evaluate the benchmarking capability of the NOSACQ-24. ResultsThe NOSACQ-24 demonstrated a comparable factor structure to the NOSACQ-50. External, construct, and concurrent validity for the NOSACQ-24 were largely supported, as were measurement equivalence and benchmarking capabilities. ConclusionUse of the NOSACQ-24 is supported, and future applications are discussed.

A proposed remedy to the inequitable representation of nursing in the Australian National Disability Insurance Scheme

BackgroundThe National Disability Insurance Scheme (NDIS) is the policy framework that has enabled a revolution in disability related support funding in Australia. The framework includes assumptions related to which professionals are eligible to provide supports under the scheme and the relative fiscal value of these supports. AimTo identify how nurses are represented in the NDIS as laid out in relevant policy documents to identify assumptions embedded related to the pricing of nursing supports. MethodsPolicy analysis of the representation of nursing in the NDIS as presented in the NDIS documentation related to provider status within the Registered and Enrolled Nurse scopes of practice and pricing arrangements. FindingsProvider inequity is identified to exist as Registered Nurses, including Nurse Practitioners, are for the most part represented in a structure shared with Disability Support Workers and Psychosocial Recovery Coaches as opposed to other comparable professionals. Price limits are lower for services provided by nurses than other comparable, or less qualified, providers. DiscussionAn alternative representation and pricing arrangement is proposed with associated costings that would solve the issue of provider inequity and potentially increase access to nursing supports for people with disability in Australia. ConclusionThe current representation of nursing in the NDIS is limiting the availability of suitably qualified professionals to NDIS participants and restricting the market mechanism aimed for in the NDIS.

“Let the people you’re supporting be how you learn”: a grounded theory study on quality support from the perspective of disability support workers

PurposeQuality disability support is fundamental to the lives of many adults with acquired neurological disability. However, little is known about the factors that influence the quality of paid support. This study is part of a larger project to develop a holistic understanding of quality support, grounded in the experience of people with acquired neurological disability, close others, and disability support workers. The current study focuses on the support worker perspective.MethodsFollowing constructivist grounded theory methodology, interviews were conducted with 12 support workers. Grounded theory analysis was followed to develop themes and subthemes and build a model of quality support.ResultsFive key themes, with fifteen subthemes emerged to depict factors influencing the quality of support. The five themes are: being the right person for the role, delivering quality support in practice, working well together, maintaining and improving quality support, and considering the broader context. Findings emphasise the importance of the support worker recognising the person as an individual and respecting their autonomy.ConclusionsCritical to quality support is centring the needs and preferences of people with disability, improving support worker working conditions and supporting people with disability and support workers to build effective, balanced working relationships.IMPLICATIONS FOR REHABILITATIONDelivering quality support in practice relies upon the support worker recognising, centring, and respecting the autonomy of the person with disability.To deliver quality support, support workers need to feel valued, be committed to the role and actively work to maintain and improve the quality of support provision.Quality support provision is facilitated by the support worker and the person with disability effectively balancing boundaries and friendship, and in turn building a quality working relationship.

Health and disability care providers’ experiences and perspectives on end-of-life care needs of individuals with long-standing physical disability: A qualitative interview study

Background: Little is known about the specific needs and experiences of individuals with long-standing physical disability at end of life. Aim: To explore health and disability care providers perspectives and experiences in relation to end-of-life care needs of individuals with long-standing physical disability. Design: Qualitative study using reflexive thematic analysis. Setting/participants: Semi-structured interviews were conducted with nine health and disability care providers from two Australian states. Results: Five themes were constructed from the data: (1) The significance of place. All participants described how the end-of-life care experience was significantly impacted by the place in which dying occurred. (2) Knowing the person and their needs. Knowledge and familiarity with the individual with long-standing disability were seen as invaluable in terms of providing continued high-quality care. (3) Navigating a new care landscape. For disability support workers, struggling to adapt from providing disability support to end-of-life care was difficult. (4) Complexities of family involvement. Past experiences of families within the healthcare system had resultant impacts on care received by the individual with long-standing disability. (5) Being prepared. Participants felt more was needed in terms of end-of-life planning and discussions around end of life for this cohort. Conclusions: This research highlights a significant lack of continuity of care and problems at the intersection of the disability and health systems when providing end-of-life care for this cohort. Suggested areas for improvement include team approaches to enable continuity of care and dying in place, and a need for knowledge and skills in this area for all stakeholders.

Education/Training Interventions to Improve Oral Health of Adults with Intellectual Disability.

People with intellectual disability have poorer oral health outcomes and experience greater difficulties accessing dental services than the rest of the community. Interdisciplinary educational programs for those involved in oral health decision making for people with intellectual disability aim to improve their oral health. This scoping review explored education/training interventions related to the oral health of adults with intellectual disability. Interventions targeted dental health and non-dental health professionals, adults with intellectual disability, and their paid and unpaid supporters. Six electronic databases were searched using PRISMA guidelines and the Crowes critical appraisal tool. The search strategy, plus the application of the inclusion and exclusion criteria, presented in the body of the manuscript, led to the selection of 20 papers for inclusion into this review. The quality of undergraduate tuition relating to disability was reported to be poor, but students and dental health professionals expressed interest in expanding their knowledge in this area. Disability-support workers and primary carers of people with intellectual disability reported improved knowledge and attitude, but the oral health status of the people they supported was not impacted. No research was found that explored the perspectives of non-dental health professionals. Oral health training/education contributes to systemic barriers in general health, wellbeing, and social inclusion of people with intellectual disability. Revision of disability-related programs in general dentistry courses and longitudinal impact research is needed.

Predictors of vaccine hesitancy among disability support workers in Australia: A cross-sectional survey

BackgroundAchieving high levels of vaccination among disability support workers (DSWs) is critical to protecting people with disability from COVID-19 and other vaccine-preventable diseases. ObjectiveTo identify how demographic factors, risk perceptions of COVID-19 and the COVID-19 vaccine, and views about COVID-19 vaccination are associated with COVID-19 vaccine hesitancy among DSWs. MethodsSurvey of 252 Australian DSWs conducted in March and early April 2021. Participants were classified as vaccine hesitant if they had not been vaccinated and would not have the vaccine when offered it. Logistic regression analysis was used to control for confounders. Results52.4% of DSWs were hesitant with females being more likely to be hesitant than males (58.2% female, 38.1% male). Hesitancy was more frequent among DSWs who were not worried about COVID-19 for themselves or their family (adjusted odds ratio (AOR) 1.86, 95% CI 1.0–3.45); did not agree they were at more risk than the rest of the community (AOR 2.29, 95% 1.25–4.20); were concerned about vaccine safety (AOR 22.86, 95% CI 10.59–49.13) and were not confident the vaccine would protect them (AOR 6.06, 95% CI 3.21–11.41) or the clients from COVID-19 (AOR 6.03, 95% CI 3.19–11.41). DSWs who thought vaccination was a personal choice were more likely to be hesitant (82.1%) than those who thought it was a community responsibility (27.6%). ConclusionsThe study shows that increasing vaccination rates among DSWs requires targeted strategies that emphasise the seriousness of the infection; the potential for vaccines to reduce transmission; and vaccine safety and efficacy.