Petri, G., Beadle‐Brown, J. and Bradshaw, J. (2020). Redefining Self‐Advocacy: A Practice Theory‐Based Approach. Journal of Policy and Practice in Intellectual Disabilities [Online]. Available at: https://doi.org/10.1111/jppi.12343.
The disabled people's movements have successfully influenced public policies and laws. Self‐advocates who are autistic or have an intellectual disability have been working alongside other advocates for recent decades. Practice theory has rarely been used in disability research. This study explores “practice theory” through the analysis of interviews with advocates and self‐advocates within the autism and intellectual disability advocacy movements. This is a qualitative, empirical study based on interviews and focus groups with 43 participants in two countries. The data were collected in 2016–17. Content analysis was used to identify themes. Data indicate that everyday practices of self‐advocates and advocates such as parent advocates and professional advocates largely overlap. There are five major types of practices that are done by nearly all advocates: “informing and being informed,” “using media,” “supporting each other,” “speaking up,” and “bureaucratic duties.” Contrary to several previous studies on self‐advocacy that emphasized “speaking up” as the main activity in advocacy, this study found that most practices of advocates and self‐advocates are “para‐advocacy” practices that may or may not lead directly to “speaking up.” Practices of self‐advocates are often embedded in other everyday activities people do. The line between practices that belong to self‐advocacy and practices outside self‐advocacy may not always be clear even to self‐advocates. Findings also indicate that hierarchies in the disability movement influence strongly the position of self‐advocates.
Bigby, C., Bould, E., Iacono, T. and Beadle-Brown, J. (2019). Predicting good Active Support for people with intellectual disabilities in supported accommodation services: Key messages for providers, consumers and regulators. Journal of Intellectual & Developmental Disability [Online]. Available at: https://doi.org/10.3109/13668250.2019.1685479.
Background: There is strong evidence about the effectiveness of Active Support. Recent research has established predictors of good Active Support as staff training, practice leadership, and service setting size. This paper explores features of organisational leadership and structures predictive of Active Support. Methods: Multilevel modelling with data from surveys, observations and interviews was used to identify predictors of Active Support at the levels of service users (n = 253), services (n = 71) and organisations (n = 14). Results: Good Active Support was predicted by: (1) positive staff perceptions of management, (2) prioritisation of practice and Active Support by senior managers, (3) strong management support for practice leadership, (4) organisation of practice leadership close to everyday service delivery, and (5) concentration of practice leadership with frontline management. Conclusion: These findings extend understanding of predictors of Active Support and provide indicators of service quality, with important implications for service providers, service users and those monitoring the quality of services.
Bigby, C., Bould, E., Iacono, T. and Beadle-Brown, J. (2019). Quality of practice in supported accommodation services for people with intellectual disabilities: What matters at the organisational level. Journal of Intellectual and Developmental Disability [Online]. Available at: http://dx.doi.org/10.3109/13668250.2019.1671965.
Background: Organisational and service level factors are identified as influencing the implementation of Active Support. The aim was to explore differences in organisational leadership and structures to identify potential relationships between these factors and the quality of Active Support in supported accommodation services.
Method: Fourteen organisations participated in this mixed methods study, which generated data from interviews with senior leaders, document reviews and observations of the quality of Active Support.
Results: Qualitative analyses revealed three conceptual categories. Senior leaders in organisations where at least 71% of services delivered good Active Support prioritised practice, understood Active Support, and strongly supported practice leadership. In these organisations practice leadership was structured close to every-day service delivery, and as part of front-line management.
Conclusions: Patterns of coherent values, priorities and actions about practice demonstrated by senior leaders were associated with successful implementation of Active Support, rather than documented values in organisational policy or procedures.
Bigby, C., Bould, E., Iacono, T., Kavanagh, S. and Beadle-Brown, J. (2019). Factors that predict good Active Support in services for people with intellectual disabilities: A multilevel model. Journal of Applied Research in Intellectual Disabilities [Online]. Available at: https://doi.org/10.1111/jar.12675.
Background: Active Support, now widely adopted by disability support organizations, is difficult to implement. The study aim was to identify the factors associated with good Active Support. Methods: Data on service user and staff characteristics, quality of Active Support and practice leadership were collected from a sample of services from 14 organizations annually for between 2 and 7 years, using questionnaires, structured observations and interviews. Data were analysed using multilevel modelling (MLM). Results: Predictors of good Active Support were adaptive behaviour, practice leadership, Active Support training, and time since its implementation. Heterogeneity, having more than six people in a service and larger organizations were associated with lower quality of Active Support. Conclusions: In order to ensure that Active Support is consistently implemented, and thus, quality of life outcomes improved, organizations need to pay attention to both service design and support for staff through training and practice leadership.
Bould, E., Bigby, C., Iacono, T. and Beadle-Brown, J. (2019). Factors associated with increases over time in the quality of ActiveSupport in supported accommodation services for people with intellectual disabilities: A multi-level model. Research in Developmental Disabilities [Online] 94:103477. Available at: https://doi.org/10.1016/j.ridd.2019.103477.
Background: Disability support organisations have embraced Active Support, but it has proved difficult to embed in services. Aims: This study aimed to identify the factors associated with increases over time in the quality of Active Support. Method: Data were collected on the predicted variable of the quality of Active Support, and predictor variables of service user, staff and service characteristics, including practice leadership, and composition and size of services from 51 services in 8 organisations over 2–7 time points. Data were analysed using multi-level modelling. Results: There was significant linear change in Active Support scores (group mean centered at the organisational level) over time. Individuals with lower support needs received better Active Support and those with higher support needs experienced greater increases over time. Stronger practice leadership and more staff with training in Active Support were significant predictors of the quality of Active Support. Larger services with seven or more individuals and where there was a very heterogeneous mix of individuals were associated with lower quality of support. Conclusions: Ensuring strong practice leadership, and staff training in Active Support that emphasises the principle of adapting support to each individual’s level of ability and preferences are key to delivering high levels of Active Support.
Šiška, J., Yirgashewa, B., Beadle-Brown, J. and Jan, Z. (2019). Role of resource centres in facilitating inclusive education: experience from Ethiopia. Disability and Society [Online]. Available at: https://doi.org/10.1080/09687599.2019.1649120.
This article focuses on access of students with disabilities to education in Ethiopia and, in particular, on the role of inclusive education resource centres (IERCs). A mixed-methods approach was used to collect both quantitative and qualitative data. The participants were school administrators, itinerant teachers, special educators, regular classroom teachers, and school directors. It was identified that a large number of students and teachers benefitted from the support provided by IERCs. The target schools are equipped with materials that support inclusive pedagogy. The awareness of parents and communities is gradually changing, except in some unreached communities. As a result, the number of students with disabilities enrolled is increasing. There were some barriers observed, such as assignment of itinerant teachers to a large number of satellite schools, high turnover of local government officials, and whether there was investment in the sustainability of IERCs and the positive outcomes observed.
Beadle-Brown, J. and Bradshaw, J. (2019). Commentary on Consumer behaviour analysis and non-adoption of behavioural interventions: implications for managerial action. Tizard Learning Disability Review [Online] 24:108-112. Available at: https://doi.org/10.1108/TLDR-05-2019-0019.
The purpose of this paper is to reflect on the difficulties highlighted by Ntinas around supporting change in services for people with intellectual and developmental disabilities.
This commentary examines what is needed for change and reflects on staff culture.
The authors propose that it is not sensible to separate the culture of a service from the implementation of person-centred approaches and attempt to map how the concepts overlap and are interconnected.
Whilst some elements of culture are clearly important in order to start the process of change, other elements will change as an intervention is introduced and embedded.
Iacono, T., Bould, E., Beadle?Brown, J. and Bigby, C. (2019). An exploration of communication within active support for adults with high and low support needs. Journal of Applied Research in Intellectual Disabilities [Online] 32:61-70. Available at: https://doi.org/10.1111/jar.12502.
The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs.
Data from 182 service users, 20–81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports.
We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC).
Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed.
Beadle-Brown, J. and Roberts, R. (2019). Challenging the status quo. Commentary on “Mothers’ experiences of the transition of young people with autism spectrum disorder to adult care” (McMinn, Schulz, & Ludlow, 2019). Research and Practice in Intellectual and Developmental Disabilities [Online] 6:139-146. Available at: https://dx.doi.org/10.1080/23297018.2019.1629333.
Beadle-Brown, J., Wilkinson, D., Richardson, L., Shaughnessy, N., Trimingham, M., Leigh, J., Whelton, B. and Himmerich, J. (2018). Imagining Autism: Feasibility of a Drama-Based Intervention on the Social, Communicative and Imaginative behaviour of Children with Autism. Autism: International Journal of Research and Practice [Online] 22:915-927. Available at: https://doi.org/10.1177/1362361317710797.
We report the feasibility of a novel, school-based intervention, coined ‘Imagining Autism’, in which children with autism engage with drama practitioners though participatory play and improvisation in a themed multi-sensory “pod” resembling a portable, tent-like structure. 22 children, aged 7–12 years, from three UK schools engaged in the 10week programme. Measures of social interaction, communication, emotion recognition, along with parent and teacher ratings, were collected before and up to 12 months after the intervention. Feasibility was evaluated through 4 domains: (1) process (recruitment, retention, blinding, inter-rater reliability, willingness of children to engage), (2) resources (space, logistics), (3) management (dealing with unexpected changes, ease of assessment), and (4) scientific (data outcomes, statistical analyses). Overall, the children, parents and teachers showed high satisfaction with the intervention, the amount of missing data was relatively low, key assessments were implemented as planned, and evidence of potential effect was demonstrated on several key outcome measures. Some difficulties were encountered with recruitment, test administration, parental response, and the logistics of setting up the pod. Following several protocol revisions and the inclusion of a control group, future investigation would be justified to more thoroughly examine treatment effects.
Stewart, K., Bradshaw, J. and Beadle-Brown, J. (2018). Evaluating service users’ experiences using Talking Mats®. Tizard Learning Disability Review [Online] 23:78-86. Available at: https://doi.org/10.1108/TLDR-05-2017-0023.
The purpose of this paper is to establish the effectiveness of Talking Mats® (TM) in evaluating service users’ experiences, and explore their views of the implementation of person-centred active support (PCAS).
This is a mixed-methods study, employing qualitative interviewing and observational measures.
Both qualitative and quantitative measures indicated inconsistent implementation of PCAS. It was possible to effectively gain participants’ views on positive and negative aspects of quality of support and quality of life, using TM, across three themes, My life, My support and Self-determination.
Generalisability of the research may be limited due to the sample, and the potential for researcher and interviewer bias is acknowledged.
TM provides a mechanism that may facilitate the inclusion of the views and experiences of people with intellectual and developmental disability (PWIDD) who have limited verbal skills. Their views need to be reflected in adaptions made to PCAS.
This study included a population who are often left out of qualitative research because of the methodologies adopted. It also included older PWIDD, where there has been less research about the effectiveness of TM.
Šiška, J., Beadle-Brown, J., Ká?ová, Š and Šumníková, P. (2018). Social Inclusion through Community Living: Current Situation, Advances and Gaps in Policy, Practice and Research. Social Inclusion [Online] 6:94-109. Available at: https://doi.org/10.17645/si.v6i1.1211.
This article draws on the findings of the EU Framework 7 project DISCIT to explore the living situation of people with disabilities a decade after the adoption of the UN Convention on the Rights of Persons with Disabilities in nine European countries representing different welfare state models and different stages in the process of deinstitutionalisation. A review of the research literature, policy and available statistics was combined with interviews with key informants in each country to explore the current living situation, changes over time and the barriers to, and facilitators for change. The article focuses in particular on whether people are experiencing opportunities for social inclusion on an equal basis with others. Although a lack of available data hampered conclusions on living situation, it was clear that there had been some change in terms of policy and funding streams available to support community living. Some countries had moved slightly towards community living, while others reported more people in institutions or the development of bigger services in the community. There was evidence of continued inequality in the living situation and full inclusion of people with disabilities, with those with intellectual disability and psychosocial disabilities being the most affected. In terms of barriers (and consequently facilitators) there were three sources: 1) policy, 2) social care and support systems, and 3) awareness, attitudes and advocacy. The need to involve people with disabilities in policymaking and the need for a co-ordinated approach between all actors in the disability sector was seen as critical for achieving further change.
Bradshaw, J., Beadle-Brown, J., Richardson, L., Whelton, B. and Leigh, J. (2018). Managers’ views of skilled support. Journal of Applied Research in Intellectual Disabilities [Online] 31:873-884. Available at: https://doi.org/10.1111/jar.12444?.
Background: Quality of life of people with intellectual and developmental disabilities has been found to primarily depend on whether staff are providing facilitative and enabling support that helps to compensate for severity of disability. Managers have a key role in facilitating staff to provide such support.
Method: Qualitative interviews were conducted with 35 managers of supported accommodation services to explore service aims and the nature of, and challenges in providing, skilled support. Key themes were identified using a Thematic Networks Analysis.
Results: Service aims were rarely formalised, were related to the individuals supported and not to the organisation. Managers found it difficult to define skilled support, other than by reference to individuals. Practice leadership roles were challenged as a result of austerity measures.
Conclusions: Front?line managers need more information and training in skilled support, with stronger leadership from senior management to provide the motivation and resources needed.
Petri, G., Beadle-Brown, J. and Bradshaw, J. (2017). “More Honoured in the Breach than in the Observance”—Self-Advocacy and Human Rights. Laws [Online] 6:26. Available at: http://dx.doi.org/10.3390/laws6040026.
Background: Since the adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD), human rights have become central for disability advocacy. The CRPD requires that disabled people and their representative organisations (DPOs) have a prominent role in the implementation and monitoring of the Convention. However, the representation of people with intellectual disabilities or autistic people is still often indirect, carried out by parents or professionals.
Methods: This is a qualitative research which looks at how self-advocates (SAs) with intellectual disabilities or autism participate in DPOs and how they see the role of human rights and laws such as the CRPD in their advocacy. Data was collected in the UK and in Hungary between October 2016 and May 2017. A total of 43 advocates (SAs and other advocates) were interviewed. For the analysis, thematic analysis was used.
Results: findings indicate that most participants have limited knowledge of the CRPD and human rights. Human rights are usually seen as vague and distant ideas, less relevant to everyday lives. SAs may not feel competent to talk about the CRPD. The inclusion of SAs in DPOs is mostly tokenistic, lacking real participation.
Conclusions: The CRPD can only bring meaningful change to SAs if they get full membership in DPOs.
Bigby, C., Bould, E. and Beadle-Brown, J. (2017). Implementation of active support over time in Australia. Journal of Intellectual & Developmental Disability [Online]:1-13. Available at: https://dx.doi.org/10.3109/13668250.2017.1353681.
Background: Research indicates the value of active support in achieving good outcomes across a number of quality of life domains for people with intellectual disabilities. However, implementation is not easy, and little research has explored why. We aimed to identify some of the factors that impact on implementation of active support in supported accommodation services.
Methods: Data on the quality of active support, staff training and practice leadership were collected through staff questionnaires, observations and manager interviews, for between two and four years across six organisations.
Results: Active support improved over time for more able people with intellectual disability, but not for people with higher support needs. There was a weak positive correlation between active support and (1) practice leadership scores, and (2) the percentage of staff reporting active support training.
Conclusions: It is important to recognise the influence of practice leadership and staff training on the quality of support and ensure provision for these in funding schemes.
Bigby, C., Bould, E. and Beadle-Brown, J. (2017). Comparing costs and outcomes of supported living with group homes in Australia. Journal of Intellectual & Developmental Disability, Journal of Intellectual & Developmental Disability [Online]:1-13. Available at: http://dx.doi.org/10.3109/13668250.2017.1299117.
Background: Supported living is perceived as more flexible than group homes for people with intellectual disability. This study identified costs and factors associated with quality of life (QOL) in supported living and compared this with group homes.
Method: Thirty-one residents in supported living participated in a survey incorporating measures of service user characteristics and QOL. Participants in supported living were compared to a sample of 397 people in 96 group homes, and QOL outcomes compared for a matched sample of 29 people in supported living and group homes.
Results: QOL differed little, supported living was cheaper, and 30?35% of both groups had similar support needs. Being younger, having autism, better health, family support, and participation in structured activities were associated with better outcomes in supported living.
Conclusions: Supported living holds potential for group home residents, but greater support is required in domains such as health and interpersonal relationships.
Bould, E., Beadle-Brown, J., Bigby, C. and Iacono, T. (2016). Measuring practice leadership in supported accommodation services for people with intellectual disability: Comparing staff-rated and observational measures. Journal of Intellectual & Developmental Disability [Online] 43:174-182. Available at: http://dx.doi.org/10.3109/13668250.2016.1259466.
Background Studies incorporating staff-rated or observational measures of practice leadership have
shown that where practice leadership is stronger, active support is better implemented. The study
aim was to compare measures of practice leadership used in previous research to determine the
extent of their correspondence.
Method A subset of data from a longitudinal study regarding 29 front-line managers working across
36 supported accommodation services in Australia was used. An observed measure of practice
leadership, based on an interview and observation of a front-line manager, was compared with
ratings of practice leadership completed by staff. The quality of active support was rated after a
2-hour structured observation.
Results Correlations between staff-rated and observed measures were non-significant. Only the
observed measure was correlated with the quality of active support.
Conclusions This study provides evidence to support using an observational measure of practice
leadership rather than reliance on staff ratings.
Bigby, C., Bould, E. and Beadle-Brown, J. (2016). Conundrums of supported living: The experiences of people with intellectual disability. Journal of Intellectual & Developmental Disability [Online] 42:309-319. Available at: https://doi.org/10.3109/13668250.2016.1253051.
Background Dissatisfaction with the inflexibility of the group home model has led to the growth of supported living that separates housing from support and is thought to have greater potential for better quality of life outcomes. Comparative studies have had mixed findings with some showing few differences, other than greater choice in supported living. By investigating service user experiences of supported living this study aimed to identify how the potential of supported living might be better realised.
Method Thirty-four people with intellectual disability participated in 7 focus group interviews and 6 people in an individual interview. Data were analysed using grounded theory methods.
Results Although participants experienced greater choice and control over their everyday lives, they did not feel they controlled the way support was provided and experienced restrictions on lifestyle associated with low income. Despite their use of community places and varied social connections to family, friends, and acquaintances, most experienced loneliness.
Conclusions If the potential of supported living is to be realised, shortcomings of support arrangements must be addressed by, for example, greater consistency of support worker skills, consumer control over recruitment and rostering, and more skilled support to build friendships and manage difficult relationships.
Turnpenny, A., Caiels, J., Whelton, B., Richardson, L., Beadle-Brown, J., Crowther, T., Forder, J., Apps, J. and Rand, S. (2016). Developing an Easy Read version of the Adult Social Care Outcomes Toolkit. Journal of Applied Research in Intellectual Disabilities [Online] 31:e36-e48. Available at: http://dx.doi.org/10.1111/jar.12294.
Background: This paper reports the experiences of developing and pre-testing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) for self-report by people with intellectual disabilities.
Method: The study has combined survey development and pre-testing methods with approaches to create accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Focus groups and cognitive interviews were conducted to test various iterations of the instrument.
Results: Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options.
Conclusions: The process demonstrated the benefits of involving people with intellectual disabilities in the design and testing of data collection instruments. Adequately adapted questionnaires can be useful tools to collect information from people with intellectual disabilities in survey research; however its limitations must be recognised.
Bigby, C. and Beadle-Brown, J. (2016). Improving Quality of Life Outcomes in Supported Accommodation for People with Intellectual Disability: What Makes a Difference?. Journal of Applied Research in Intellectual Disabilities [Online] 31:e182-e200. Available at: https://doi.org/10.1111/jar.12291.
The quality of life (QOL) of people with intellectual disability living in supported accommodation services is variable, influenced by many possible factors. Various frameworks have attempted to identify these factors without assigning value, direction of influence or relative impact on outcomes.
A realist review of the literature aimed to expose different propositions about variables influencing QOL outcomes and review the strength of supporting evidence for these, to identify their relative influence. Evidence was reviewed for and against each of five clusters.
Evidence was strongest for the presence of staff practices (use of Active Support), front-line management practice (use of practice leadership), culture (enabling and motivating), human resources policies and practice (that support front-line leaders and recruitment of staff with the right values), adequate resources, and small, dispersed and homelike settings.
The evidence informs policy and practice but in some clusters remains limited, warranting further research which measures outcomes on all QOL domains.
Bigby, C. and Beadle-Brown, J. (2016). Culture in Better Group Homes for People With Intellectual Disability at Severe Levels. Intellectual and Developmental Disabilities [Online] 54:316-331. Available at: https://doi.org/10.1352/1934-9556-54.5.316.
Building on cultural dimensions of underperforming group homes this study analyses culture in better performing services. In depth qualitative case studies were conducted in 3 better group homes using participant observation and interviews. The culture in these homes, reflected in patterns of staff practice and talk, as well as artefacts differed from that found in underperforming services. Formal power holders were undisputed leaders, their values aligned with those of other staff and the organization, responsibility for practice quality was shared enabling teamwork, staff perceived their purpose as “making the life each person wants it to be,” working practices were person centered, and new ideas and outsiders were embraced. The culture was characterized as coherent, respectful, “enabling” for residents, and “motivating” for staff. Though it is unclear whether good group homes have a similar culture to better ones the insights from this study provide knowledge to guide service development and evaluation.
Bould, E., Beadle-Brown, J., Bigby, C. and Iacono, T. (2016). The role of practice leadership in active support: impact of practice leaders’ presence in supported accommodation services. International Journal of Developmental Disabilities [Online] 64:75-80. Available at: https://doi.org/10.1080/20473869.2016.1229524.
Objectives: Research shows practice leadership to be a factor in the successful implementation of active support. The aim of the study was to explore differences in staff practice, associated with the presence of a practice leader in a shared supported accommodation service.
Methods: Quality of support and engagement for 189 service users with intellectual disability from 58 services were collected during a 2 h observation using the EMAC-R and ASM. The practice leader was present in 19 services (n = 59) and absent in 39 (n = 111). An Observed Measure of Practice Leadership was administered during a second visit to each service.
Results: When the practice leader was present, levels of engagement and active support were statistically higher (p < 0.01). Although measured at a different time, observed practice leadership was also higher in services where the practice leader was present during the first observation.
Conclusion: The level of observed practice leadership and presence of the practice leader appear to be associated with better quality of support. This finding provides further evidence of the importance of systems for supporting, monitoring, modelling, and improving staff practice for effective implementation of active support.
Richardson, L., Beadle-Brown, J., Bradshaw, J., Guest, C., Malovic, A. and Himmerich, J. (2016). I felt that I deserved it - experiences and implications of disability hate crime. Tizard Learning Disability Review [Online] 21:80-88. Available at: http://dx.doi.org/10.1108/TLDR-03-2015-0010.
– The purpose of this paper is to summarise key findings and recommendations from the “Living in Fear” research project focusing on the experiences of people with learning disabilities and autism related to disability hate crime and the experience of the police in dealing with such incidents.
– Methods included: first, a postal survey with 255 people with learning disabilities or autism (or their carers for people with more severe disabilities), of whom 24 also took part in semi-structured interviews; and second, an electronic survey of the knowledge and experience of 459 police officers or support staff.
– Just under half of participants had experienced some form of victimisation. The Police reported problems with the definition of disability hate crime and challenges to responding effectively.
– A case study from the research highlights some of the key findings and is linked to implications for people with learning disabilities and autism, carers, police and other agencies.
– Previous research has highlighted that victimisation is an issue for this group of people, but has never explored the prevalence and nature of such experiences in a representative sample. Neither has previous research brought together the perspectives of so many different agencies to offer recommendations that go across many sectors. The paper will be of interest to people with disabilities and their carers, professionals in health, social care and the Criminal Justice system.
Bigby, C., Knox, M., Beadle-Brown, J. and Clement, T. (2015). We just call them people: positive regard as a dimension of culture in group homes for people with severe intellectual disability. Journal of Applied Research in Intellectual Disabilities [Online] 28:283-295. Available at: http://dx.doi.org/10.1111/jar.12128.
A dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not 'like us' (Bigby, Knox, Beadle-Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively.
Three in-depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review.
Consistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being 'like us'. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities.
This positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership.
Beadle-Brown, J., Bigby, C. and Bould, E. (2015). Observing practice leadership in intellectual and developmental disability services. Journal of Intellectual Disability Research [Online] 59:1081-1093. Available at: http://dx.doi.org/10.1111/jir.12208.
Improving staff performance is an issue in services for people with intellectual disability. Practice leadership, where the front line leader of a staff team focuses on service user outcomes in everything they do and provides coaching, modeling, supervision and organisation to the team, has been identified as important in improving staff performance. To date this finding is based only on self-report measures.
This paper describes and tests an observational measure of practice leadership based on an interview with the front-line manager, a review of paperwork and observations in 58 disability services in Australia.
The measure showed good internal consistency and acceptable inter-rater reliability. Practice leadership was associated with staff practice and outcomes for service users. The observed measure of practice leadership appears to be a useful tool for assessing whether leadership within a service promotes enabling and empowering support by staff. It was found to discriminate higher and lower performing services in terms of active support.
The measure had good reliability and validity although some further testing is required to give a complete picture of the possible uses and reliability of the measure. The measure is potentially useful in contexts of both research and service development. The confirmation of previous findings from self-report measures that practice leadership is related to the quality of staff practice and outcomes for service users has implications for policy and practice in terms of the training of managers and structures for organisational management.
Beadle-Brown, J., Leigh, J., Whelton, B., Richardson, L., Beecham, J., Bäumker, T. and Bradshaw, J. (2015). Quality of life and quality of support for people with severe intellectual disability and complex needs. Journal of Applied Research in Intellectual Disabilities [Online] online:0-0. Available at: http://dx.doi.org/10.1111/jar.12200.
Background: People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life.
Methods: Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110 people with severe and profound disabilities and complex needs.
Results: On average, people spent approximately 40% of their time engaged in meaningful activities, received contact from staff 25% of the time (6% in the form of assistance to be engaged). Just over one-third received consistently good active support, which was associated with other measures of quality of support and emerged as the strongest predictor of outcomes.
Conclusions: Quality of life and quality of support were relatively poor, although with about one-third of people receiving skilled support. Consistently good active support was the best predictor of outcome and proposed as a good indicator of skilled support.
Ockenden, J., Ashman, B. and Beadle-Brown, J. (2014). Active Support - Fundamental to Positive Behaviour Support. Research and Practice in Intellectual and Developmental Disabilities [Online] 1:98-107. Available at: http://dx.doi.org/10.1080/23297018.2014.961528.
Support for people with intellectual disabilities and challenging behaviour in the United Kingdom is currently under much scrutiny. Positive behaviour support has been put forward as the key approach for improving services for this group of people. Drawing on both the literature and on the practice experience of organisations, arguments are made that implementing active support can reduce the need for positive behaviour support and also support the implementation of positive behaviour support where this is needed. Key features of both active support and positive behaviour support are outlined and the fit between the two explained at both a general level and for the different stages of developing and implementing positive behaviour support interventions. It is suggested that implementing active support not only provides conditions in which challenging behaviour is likely to decrease, thereby reducing the need for the implementation of positive behaviour support, but, where such implementation is necessary, it can provide a valuable foundation upon which positive behaviour support can be built. Appreciating the extent to which active support complements and in fact sets the context for successful implementation of positive behaviour support will help practitioners in this field develop a successful approach to challenging behaviour.
Turnpenny, A. and Beadle-Brown, J. (2014). Use of quality information in decision-making about health and social care services - a systematic review. Health and Social Care in the Community [Online] 23:349-361. Available at: http://dx.doi.org/10.1111/hsc.12133.
User choice and personalisation have been at the centre of health and
social care policies in many countries. Exercising choice can be especially
challenging for people with long-term conditions (LTC) or disabilities.
Information about the quality, cost and availability of services is central
to user choice. This study used systematic review methods to synthesise
evidence in three main areas: (i) how people with LTC or disabilities and
their family carers ?nd and access information about the quality of
services; (ii) how quality information is used in decision-making; and
(iii) what type of quality information is most useful. Quality information
was de?ned broadly and could include formal quality reports (e.g.
inspection reports, report cards, etc.), information about the characteristics
of a service or provider (e.g. number and quali?cations of staff, facilities,
etc.) and informal reports about quality (e.g. personal experience, etc.).
Literature searches were carried out using electronic databases in January
2012. Thirteen papers reporting ?ndings from empirical studies published
between 2001 and 2012 were included in the review. The majority of
papers (n = 9) had a qualitative design. The analysis highlighted the use
of multiple sources of information in decision-making about services and
in particular the importance of informal sources and extended social
networks in accessing information. There is limited awareness and use of
‘of?cial’ and online information sources. Service users or family carers
place greater emphasis on general information and structural indicators.
Clinical or quality-of-life outcomes are often dif?cult to interpret and
apply. Trust emerged a key issue in relation to quality information.
Experiential and subjective information is highly valued and trusted.
Various barriers to the effective use of quality information in making
choices about services are identi?ed. Implications for policy and future
research are discussed.
Beadle-Brown, J., Mansell, J., Ashman, B., Ockenden, J., Iles, R. and Whelton, B. (2014). Practice leadership and active support in residential services for people with intellectual disabilities: an exploratory study. Journal of Intellectual Disability Research [Online] 58:838-850. Available at: http://dx.doi.org/10.1111/jir.12099.
Background: We hypothesised that a key factor determining the quality of active support was 'practice leadership' - provided by the first-line manager to focus staff attention and develop staff skills in providing direct support to enable people with intellectual disabilities to have a good quality of life. This exploratory study focused on what levels of practice leadership were found and its role in explaining variation in active support.
Method: Relevant aspects of management, including practice leadership, were assessed by questionnaires administered to staff in residential settings alongside observational measures of active support and resident engagement in meaningful activity. Relationships between these variables were explored using regression and post hoc group comparisons.
Results: There was wide variation, with average levels of practice leadership being low, though improving over the period studied. Practice leadership had a significant impact on active support, but was fully mediated by the effect of quality of management. When the quality of management was higher better practice leadership did produce a significant difference in active support. However, higher quality of management on its own did not produce better active support.
Conclusions: A number of limitations are acknowledged and further research is required. Practice leadership appears to be an important factor in enabling staff to provide active support but as part of generally good management. Given the rather low levels found, attention needs to be given to the training, career development and support of practice leaders and also to how to protect their time from their many other responsibilities.
Turnpenny, A. and Beadle-Brown, J. (2014). Development and outcomes of community-based services in Hungary. Journal of Applied Research in Intellectual Disabilities [Online] 27:340-340. Available at: http://dx.doi.org/10.1111/jar.12105.
Aims: This study compares the characteristics and quality of life outcomes of people in institutions and group homes in Hungary.
Method: Fifteen group homes and institutions participated in the study. Six from each group home, and 12 individuals from each institution (N = 120) were selected randomly to take part. A sub-sample (n = 60) of matched groups was selected based on age, gender and adaptive skills. Data about quality of life was collected in six domains using informant reports and direct observation during field visits. Domains included: community participation, social relationships, self-determination and choice, health and psychotropic medication; engagement in meaningful activities, and quality of staff support.
Results: Smaller-scale community-based arrangements in Hungary have similar advantages and weaknesses to those reported in other countries. People who live in group homes enjoyed more choice and participated in more domestic activities. Community participation was related to the location of the setting rather than type of provision. People who lived in villages and rural areas had fewer opportunities in their local community. Levels of psychotropic medication were alarmingly high in all three groups, particularly in institutions and independent group homes.
Conclusion: Limitations as well as implications for policy and practice are discussed.
Turnpenny, A., Whelton, B., Richardson, L., Beadle-Brown, J., Caiels, J., Crowther, T., Apps, J. and Malley, J. (2014). Promoting participation of people with intellectual and developmental disabilities in social care research-developing an adapted version of ASCOT for self-report. Journal of Applied Research in Intellectual Disabilities [Online] 27:345-345. Available at: http://dx.doi.org/10.1111/jar.12105.
Bigby, C., Knox, M., Beadle-Brown, J. and Bould, E. (2014). Identifying good group homes: qualitative indicators using a quality of life framework. Intellectual and Developmental Disabilities [Online] 52:348-366. Available at: http://dx.doi.org/10.1352/1934-9556-52.5.348.
Despite change toward more individualized support, group homes are likely to remain for people with severe intellectual disability. As such, the search continues for ways to determine and maintain the quality of these settings. This article draws on in-depth qualitative analysis of participant observations conducted over 9–12 months in seven group homes for 21 people with a severe and profound level of intellectual disability. It explores the conceptualization of good outcomes and support for this group in terms of their quality of life and staff practices. The qualitative indicators of good outcomes for this group using quality of life domains can be used by auditors, community visitors, funders, advocates, or family members to guide observation and judgements about group homes.