Development and preliminary evaluation of a novel participant‐led video intervention to train disability support workers
2022; Wiley; Volume: 30; Issue: 6 Linguagem: Inglês
10.1111/hsc.13961
ISSN1365-2524
AutoresJacinta Douglas, Kate D’Cruz, Di Winkler, Megan Topping, Cathy Bucolo, Carolyn Finis,
Tópico(s)Stroke Rehabilitation and Recovery
ResumoHealth & Social Care in the CommunityVolume 30, Issue 6 p. 2414-2425 EMPIRICAL RESEARCH MIXED METHODSOpen Access Development and preliminary evaluation of a novel participant-led video intervention to train disability support workers Jacinta Douglas PhD, Jacinta Douglas PhD orcid.org/0000-0003-0940-6624 La Trobe University, Melbourne, Victoria, Australia Summer Foundation, Melbourne, Victoria, AustraliaSearch for more papers by this authorKate D'Cruz PhD, Corresponding Author Kate D'Cruz PhD k.dcruz@latrobe.edu.au orcid.org/0000-0002-5155-1350 La Trobe University, Melbourne, Victoria, Australia Summer Foundation, Melbourne, Victoria, Australia Correspondence Megan Topping, 991 Whitehorse Road, Box Hill, Vic. 3128, Australia. Email: megan.topping@summerfoundation.org.au Kate D'Cruz, La Trobe University, Melbourne, Vic., Australia. Email: k.dcruz@latrobe.edu.auSearch for more papers by this authorDi Winkler PhD, Di Winkler PhD orcid.org/0000-0003-3899-6248 La Trobe University, Melbourne, Victoria, Australia Summer Foundation, Melbourne, Victoria, AustraliaSearch for more papers by this authorMegan Topping BSc Honours (Psychology), Corresponding Author Megan Topping BSc Honours (Psychology) megan.topping@summerfoundation.org.au orcid.org/0000-0001-6008-7943 La Trobe University, Melbourne, Victoria, Australia Summer Foundation, Melbourne, Victoria, Australia Correspondence Megan Topping, 991 Whitehorse Road, Box Hill, Vic. 3128, Australia. Email: megan.topping@summerfoundation.org.au Kate D'Cruz, La Trobe University, Melbourne, Vic., Australia. Email: k.dcruz@latrobe.edu.auSearch for more papers by this authorCathy Bucolo BAS (Speech Pathology), Cathy Bucolo BAS (Speech Pathology) Summer Foundation, Melbourne, Victoria, AustraliaSearch for more papers by this authorCarolyn Finis BSc Honours (Psychology), Carolyn Finis BSc Honours (Psychology) Summer Foundation, Melbourne, Victoria, AustraliaSearch for more papers by this author Jacinta Douglas PhD, Jacinta Douglas PhD orcid.org/0000-0003-0940-6624 La Trobe University, Melbourne, Victoria, Australia Summer Foundation, Melbourne, Victoria, AustraliaSearch for more papers by this authorKate D'Cruz PhD, Corresponding Author Kate D'Cruz PhD k.dcruz@latrobe.edu.au orcid.org/0000-0002-5155-1350 La Trobe University, Melbourne, Victoria, Australia Summer Foundation, Melbourne, Victoria, Australia Correspondence Megan Topping, 991 Whitehorse Road, Box Hill, Vic. 3128, Australia. Email: megan.topping@summerfoundation.org.au Kate D'Cruz, La Trobe University, Melbourne, Vic., Australia. Email: k.dcruz@latrobe.edu.auSearch for more papers by this authorDi Winkler PhD, Di Winkler PhD orcid.org/0000-0003-3899-6248 La Trobe University, Melbourne, Victoria, Australia Summer Foundation, Melbourne, Victoria, AustraliaSearch for more papers by this authorMegan Topping BSc Honours (Psychology), Corresponding Author Megan Topping BSc Honours (Psychology) megan.topping@summerfoundation.org.au orcid.org/0000-0001-6008-7943 La Trobe University, Melbourne, Victoria, Australia Summer Foundation, Melbourne, Victoria, Australia Correspondence Megan Topping, 991 Whitehorse Road, Box Hill, Vic. 3128, Australia. Email: megan.topping@summerfoundation.org.au Kate D'Cruz, La Trobe University, Melbourne, Vic., Australia. Email: k.dcruz@latrobe.edu.auSearch for more papers by this authorCathy Bucolo BAS (Speech Pathology), Cathy Bucolo BAS (Speech Pathology) Summer Foundation, Melbourne, Victoria, AustraliaSearch for more papers by this authorCarolyn Finis BSc Honours (Psychology), Carolyn Finis BSc Honours (Psychology) Summer Foundation, Melbourne, Victoria, AustraliaSearch for more papers by this author First published: 03 August 2022 https://doi.org/10.1111/hsc.13961AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Abstract This paper describes the development and preliminary evaluation of a novel participant-led video (PLV) intervention to support people with disability (PWD) and cognitive and communication impairments to communicate their needs and preferences to their disability support workers. The PLV intervention was designed following a scoping literature review and workshop with PWD and close others. Subsequently, it was piloted with five primary participants with acquired brain injury and cognitive and communication impairments, five close other supporters and five facilitators. An independent mixed methods evaluation of the pilot was conducted with participants, close others and facilitators. All pilot evaluation participants reported high levels of satisfaction with the PLV intervention (mean ratings: primary participants 4.5/5.0; supporters 5.0/5.0; facilitators 4.8/5.0). When primary participants and their supporters were asked to rate how likely they were to recommend the PLV intervention, responses were extremely positive with the mean rating exceeding eight on a 10-point scale. Qualitative analysis of interview data revealed the PLV to be a person-centred experience for primary participants that was structured around sense of self and included having a voice and taking control in directing their lives, personal growth through participation and feeling validated through the experience. The production and use of PLV training resources has much potential to improve the delivery of support and maximise support outcomes by enabling people with cognitive and communication impairments to have choice and control, set their own goals and direct their supports. Further research is required with a larger sample size and longitudinal evaluation of participant outcomes. What is known about this topic? The functioning of the National Disability Insurance Scheme in Australia has influenced a move away from training, as services have less funding for systems and infrastructure Improving the quality of support for people with cognitive and communication impairments is a complex process that requires an individualised approach. Tailoring support to the individual is key to quality support, but it can be difficult for people with cognitive and communication challenges to train support workers. What this paper adds? Participant-led videos support people with cognitive and communication impairments to communicate their support preferences. The pilot evaluation revealed that people with disability, close others and facilitators report high levels of satisfaction with the participant-led video (PLV) intervention. People with disability experience PLVs as a person-centred intervention that they would recommend to others. 1 INTRODUCTION It is widely acknowledged in research literature that people with disability (PWD) benefit from support, not only to manage their daily living but to build their capacity to exercise choice and control and move towards self-direction (Bigby & Fyffe, 2009). This is especially relevant for people with high and complex care needs, such as those with cognitive and communication impairments (Bigby et al., 2017; Douglas et al., 2015). In the Australian context, the National Disability Insurance Scheme (NDIS) implemented in 2013 (Parliament of Australia, 2013) provides individualised funding packages to Australians with disabilities to access supports. Paid disability support is primarily provided by disability support workers (DSWs). The role of the DSW is to provide necessary supports in line with the needs and preferences of the person with disability, ultimately supporting them to live an ordinary life and participate effectively in the community (Australia Government Department of Social Services, 2016; Australian Government Productivity Commission, 2017). Accordingly, a fundamental principle of the NDIS is to ensure that PWD have the right to exercise choice and control in directing their lives. Whilst this shift to a 'rights' focus for PWD is long overdue, many NDIS participants living with chronic disability do not have the cognitive or communication capacity 'in the moment' to exercise choice and control and to direct support services. Further, people with cognitive and communication impairments often have complex support needs and therefore require supports that are flexible and responsive to their changing abilities, needs and priorities over time. Thus, with a focus on personalised support for a diverse population comes greater demands on the disability workforce (Moskos & Isherwood, 2019). In response to this challenge, the NDIS committed to spend $24.2 billion in 2019–2020 (National Disability Insurance Agency, 2020). Although this substantial increase in funding was expected to result in many DSWs with limited disability experience or education entering the labour force, limited resources were allocated for training (Cortis et al., 2017; Green & Mears, 2014; Moskos & Isherwood, 2019). Indeed, one of the key weaknesses of the NDIS is reliance on an unskilled workforce to support participants with cognitive and communication difficulties to obtain a good life, achieve their goals and increase their independence. Whilst the experience and education of DSWs are important, quality of support is dependent on a multitude of factors (Topping et al., 2020). To provide individualised person-centred support, DSWs must learn the unique needs and preferences of the individual they are supporting (Fadyl et al., 2011; Gridley et al., 2014). However, with the high turnover rates and casualisation evident in the disability workforce, continuity of support can be compromised (Mavromaras et al., 2018; National Disability Services, 2018). Given this lack of continuity, DSWs have less time to get to know and build a productive working relationship with the individuals they are supporting (Bourke et al., 2019; Nilsson et al., 2016). Further, the high turnover of DSWs can be stressful and onerous for PWD who not only have to recruit new workers, but also train new DSWs to provide support in line with their needs (Gridley et al., 2014). Indeed, there are concerns that individualised funding schemes exacerbate inequities between disability types due to the complex administrative burden of ensuring the maintenance of an effective support team (Carey et al., 2017; Malbon et al., 2019). This inequality is likely to be the same with exercising choice and control over support arrangements. Specifically, for people with cognitive and communication impairments, training and leading their DSWs is likely to be considerably more difficult than for people with other types of disability. Thus, there is a need for mechanisms to help people with cognitive and communication impairments to lead their supports at minimal cost to themselves. This study is the first of a series of studies within a larger project to develop an evidence-based intervention to improve the quality and consistency of disability support provided to people with cognitive and communication impairments. Improving the quality of support for people with cognitive and communication impairments is a complex process involving multiple stakeholders (e.g. PWD, family members and DSWs) and interacting components (e.g. skills, attributes and knowledge of the DSW, cognitive and communication capacity of the person with disability and external systemic factors) that requires an individualised and responsive approach. Video technology was chosen for this intervention, as it allows PWD to direct DSWs using their authentic voice, but with time to prepare and an option to update when needs and preferences change. As a multi-medium tool, we believe videos give richer insight into a person compared to written notes, enabling the support worker to see and hear how the person interacts and wants to be supported. The research process underpinning the overall development of the Participant-Led Video (PLV) intervention was modelled on the four-phase approach for development and evaluation of complex interventions described by Craig et al. (2008). The four phases are (1) development, (2) feasibility and piloting, (3) evaluation and (4) implementation (see Figure 1). This project was completed by the partnering of two organisations. The advocacy organisation was successful in obtaining a grant to conduct the lived experience workshops and the pilot and the university was engaged to complete the scoping review and independent evaluation. Approval to conduct the independent evaluation was obtained from the university ethics committee. This paper presents the method and results of phases one and two. FIGURE 1Open in figure viewerPowerPoint Process of development and evaluation: Modelled after Craig et al. (2008) 2 PHASE ONE: DEVELOPMENT The aim of the development phase was to gather the existing evidence, both published literature and lived experience, relating to the production of the PLV intervention. Therefore, the development phase involved (a) a customised scoping review of the literature and (b) lived experience workshops with PWD and close others. Phase 1 was commenced in 2017 and concluded in 2018. 2.1 Scoping review Considering the scarcity of literature on the topic, scoping review methodology was chosen to systematically investigate and summarise existing research. This approach to reviewing the literature is typically adopted when searching topics with a broad research question, and no prior synthesis on the topic (Arksey & O'Malley, 2005; Levac et al., 2010). In undertaking this scoping review, the five-step framework developed by Arksey and O'Malley (2005) was followed. The search was guided by the central research question: what video-based resources, tools and supports are effective in building the capacity of PWD to set goals, exercise choice and control and direct their care? 2.1.1 Method A customised search strategy was developed in consultation with a research librarian to identify relevant studies in academic and international grey literature from 2006 to 2017, with search terms guided by the research question. The search was conducted on five databases: CINAHL, MEDLINE, Embase, PsycINFO and Sociological Abstracts. As is consistent with scoping review methodology, preliminary searches were utilised to explore terms and guide refinement. For example, both 'goal-setting' and 'choice and control' retrieved a large proportion of irrelevant articles, so these terms were removed. It was also recognised that the concept of video technology was critical to the work of the PLV intervention, resulting in the addition of this concept and associated search terms to the search strategy. The final three concepts were: (1) population (intellectual disability, acquired disability, cognitive disability, communication disability, acquired brain injury (ABI), traumatic brain injury, mentally disabled) (2) capacity building approach to self-management (self-advocacy, capacity building, self-managing, self-coaching) and (3) video technology (video recording, narration, storytelling, podcast, blogging, website). Keywords and database subject headings (where applicable) were searched for each concept (see Appendix S1 for an example). Following removal of duplicates, the search yielded 384 records. PRISMA guidelines were followed for the study selection process (Tricco et al., 2018). Inclusion criteria included: All literature, age 16 to 65 years, grey literature and years 2006–2017. Title/abstract screening of retrieved articles was conducted by the second author (KD) resulting in the exclusion of 371 articles based on eligibility criteria. An additional 10 articles were found through hand sort. In total, 23 full-text articles were double screened (KD & JD). Following eligibility screening and assessment of full-text articles, four relevant articles were reviewed. Grey literature was searched on Google, Google Scholar and PubMed using search terms utilised for the database searches. 2.1.2 Results The grey literature search revealed an enormous growth in patient care videos produced across healthcare systems internationally. For example, a Google search of 'patient experience videos' delivered nearly seven million sites that pertain to patient care and a large proportion of these demonstrated skills and interactions via video scenarios of patients with healthcare workers. Topics range from patient satisfaction, empathy, communication skills and handling specific situations (e.g. working with a distressed patient). The grey literature was evaluated for number of hits returned for specific search terms, and the first 250 results were reviewed for presence of participant-led content. However, most of these video resources, whilst inclusive of the patient perspective, were not participant (or patient) led with respect to the identified goal of the video resource being focussed on the individual. Given the lack of participant-led resources identified through the grey literature, a systematic search of the grey literature was not pursued. Four relevant journal articles were identified through the peer-reviewed literature search (Davidson, 2015; Garcia-Iriarte et al., 2009; Lakhani et al., 2017; Lorenz & Chilingerian, 2011). These four articles were reviewed and data were extracted regarding population, study design and principles of intervention. Participants across the four articles included brain injury survivors (Lorenz & Chillingerian), adults with intellectual disability (Davidson; Garcia-Iriarte & Lakhani) and adults with aphasia (Lakhani). Research methods evidenced across the studies were focus groups, participatory action research (PAR), sustained participatory engagement, nominal group technique (NGT) and photovoice. Whilst only one article (Davidson, 2015) outlined the co-creation of self-advocacy videos, Lorenz and Chilingerian (2011) described the use of photovoice or photo-elicitation to better understand patient preferences, Garcia-Iriarte et al. (2009) explored the use of participatory action research (PAR) and visual storytelling tools for capacity development and Lakhani et al. (2017) conducted a systematic review of the use of nominal group technique (NGT) to gain the perspectives of people with cognitive disability. Together these articles identified three key principles of relevance to the implementation of participant-led self-advocacy videos: (1) capability or strengths focus; (2) engagement strategies; and (3) feedback process. Capability or strengths focus The four articles each adopted a strengths-based approach. Davidson (2015) utilised the capability approach that focuses on what people can do, including their potential capacity. Participants are positioned as the producers, rather than consumers, of knowledge, as demonstrated in the process of co-creation of self-advocacy videos. Garcia-Iriarte et al. (2009) emphasised the importance of identifying both the strengths and needs of participants, and Lorenz and Chilingerian (2011) described a shift in perspective as participants shared their lived experiences and became 'co-experts' in partnership with their healthcare providers. Engagement strategies A key strength of all approaches outlined in the articles was engagement between participants and facilitators and between participant peers. Lakhani et al. (2017) identified a range of engagement strategies including: brainstorming with participants; training facilitators in information gathering techniques for people with cognitive impairment; and using multi-modal methods to gather information and ask questions. Davidson (2015) adopted an action research process that included the use of interviews to gather information about what the participants wanted to voice in their videos, co-construction of videos, viewing of videos together and focus groups. Lorenz and Chilingerian (2011) outlined a comprehensive approach to using questions to prompt visual exploration of participants' preferences and experiences. Integration of feedback process Two of the four selected articles introduced the role of feedback in supporting capacity development through both the experience of capacity validation and the opportunity to help others with a disability. Davidson (2015) integrated several feedback processes into the project including: viewing videos together, publishing videos on YouTube with use of the comments function, and a focus group to watch videos with peers and celebrate achievements. Garcia-Iriarte et al. (2009) described a cyclical process of action and reflection (praxis) with self and peer feedback to build group capacity. 2.2 Lived experience workshops As a partner in developing the intervention, the storytelling team at the advocacy organisation facilitated workshops to engage PWD and DSW in the project, as a preliminary step before the research pilot formally commenced. Twelve PWD (six males, six females), nine close others (six mothers, a father, a spouse and a brother) and six DSWs who accompanied participants with disability participated in the workshop. Disability types included ABI, stroke, cerebral palsy and progressive genetic disorders. The aim of the workshops was to capture experiences of 'disability support', to gather information about desirable DSW attributes and establish whether the PLV intervention resonated with people with lived experience of disability and support. Consistent with the practice of the advocacy organisation, the voice of PWD was paramount to the development of the PLV intervention. 2.2.1 Procedure Workshops were facilitated by staff at the advocacy organisation who had extensive experience facilitating storytelling workshops with people with cognitive and communication impairments. To maximise engagement, the workshops were structured in three groups: (1) close others, (2) PWD who experience predominantly communication challenges and (3) PWD who experience predominantly cognitive challenges. Each workshop was conducted in a wheelchair-accessible location and was approximately 4 h in duration with rest breaks as needed. The workshops followed a process of group facilitation that encouraged story sharing, reflection and discussion. Reflections and suggestions were compiled, reviewed and revised by participants throughout the workshops and shared across the three groups. 2.2.2 Results During the workshops, PWD and families described how they were frequently frustrated by the lack of consistency and variable quality of the support they received. Participants reported that families and some PWD frequently spend significant time and energy training DSWs because of a high staff turnover rate. PWD want DSWs who are informed, skilled and trained to meet their specific support needs and preferences. Prior training and experience were noted as important, but not as important as a willingness to learn the person's specific needs and getting to know them as an individual. All workshop participants were highly engaged and enthusiastic about the development of an intervention that provides structure and support for PWD to direct and train DSWs. 3 PHASE TWO: FEASIBILITY AND PILOTING The PLV intervention was piloted by the advocacy organisation with the support of funding from the National Disability Services' Innovative Workforce Fund (Australian Government). The evaluation was conducted independently by university researchers and was ethically approved. The aim of the pilot evaluation was to gain an understanding of the experience, and satisfaction with, participating in the PLV intervention. The evaluation captured the perspectives of primary participants with ABI, close other participants who supported primary participants and staff who facilitated the video production process. 3.1 Method 3.1.1 Participants The PLV pilot project involved 14 participants: five primary participants (four males, one female), five close other supporters (two family members, three DSWs) and four staff facilitators (see Table 1). The primary participants had ABI with resultant cognitive and communication impairments and high support needs. Verbal communication was a substantial challenge for four of the five primary participants who utilised a range of strategies such as augmented communication devices, a whiteboard, gesture and assistance of close other supporters. One primary participant lived in a residential aged care facility, two in shared supported accommodation and two at home with family members. Close other supporters were family members or DSWs who had a long-standing relationship with the primary participants. Facilitators had substantial practice experience in either clinical or person-centred digital story production. All participants from the pilot were invited and consented to participate in the evaluation. Participants were provided with written information about the research, were reminded of the voluntary nature of their participation and assured of the anonymity of their data. TABLE 1. Participants' characteristics Participant Gender Living arrangement Complex communication needs Primary participant Male SSA Yes Primary participant Female Home with family Yes Primary participant Male RAC No Primary participant Male Home with family Yes Primary participant Male SSA Yes Close other supporter (family member) Female Close other supporter (family member) Male Close other supporter (support worker) Male Close other supporter (support worker) Male Close other supporter (support worker) Female Staff facilitator Female Staff facilitator Female Staff facilitator Female Staff facilitator Female 3.1.2 Design and analysis The pilot study evaluation used a mixed methods research design (MMR) (Teddlie & Tashakkori, 2010). The evaluation aimed to understand the experience of the PLV intervention and to measure satisfaction with the PLV intervention from the perspective of (1) primary participants with ABI-related cognitive and communication impairments, (2) close others who supported primary participants through the PLV intervention (close other supporters), and (3) staff who facilitated the video production process of the PLV intervention (facilitators). Given the intent of the qualitative arm of the evaluation was to develop understanding grounded in the experiences of participants, the PLV process was explored within a constructivist grounded theory framework (Charmaz, 2006, 2009). Grounded theory is well suited to social enquiry when there is a relative lack of established information about the phenomenon of interest and researchers can learn from participants how to better understand that phenomenon (Bluff, 2005; Browne, 2004). A quantitative approach was used to index primary participants' knowledge of their support needs and thereby contextualise their lived experience of support whilst orientating them to the aims of the PLV intervention. Primary participants and their close others were also asked to rate their satisfaction and enjoyment with each component of the video production process. One primary participant did not participate in the quantitative component of the evaluation due to physical pain and agitation that impacted data collection. As recommended for MMR (Teddlie & Tashakkori, 2010), the evaluation components were designed and implemented to address related aspects of the same question with the intention of integrating the results emerging from both approaches. 3.1.3 Procedure Video production The video production process was informed by the learnings of the scoping literature review and lived experience workshops. It included five steps: (1) goal setting, (2) scripting, (3) storyboarding, (4) filming and (5) editing. Primary participants were involved in steps 1–4, supported by the advocacy organisation staff facilitators. Allied health professionals, support coordinators and/or close others assisted in the planning and production of the videos, and editing was completed by staff at the advocacy organisation. Underpinning the PLV intervention was a commitment to maximising the participation of people with disability (primary participants) in all steps of the process. Pilot evaluation Primary participants and close others were interviewed and completed questionnaires in the home environment following completion of the video resources and viewing of the finished product. Facilitators were interviewed in the office. The semi-structured interview format was broad based and allowed for reflections across each component of the video production process. Primary participants were asked to consider and rate their knowledge of their own support needs, whilst both primary participant and close other interview questions explored the process of the PLV intervention. Interviews with facilitators explored more broadly the experience of facilitating the PLV intervention. Interviews were conducted by a university researcher who was independent from the PLV intervention and had extensive experience working in community neurorehabilitation. All interviews were audio recorded and professionally transcribed. Written transcripts and researcher reflective journal entries were analysed using constructivist grounded theory methods (Charmaz, 2006). Analysis followed an iterative process of initial and focused coding ensuring that the data were grounded in the participants' experiences. The first author (JD) coded all transcripts with regular analytical discussions with the second author (KD). Utilising a
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