Heidi Zeeman

Nominal group technique for individuals with cognitive disability: a systematic review

Abstract Rationale: Considering the perspectives of individuals with cognitive disability is important for their participation in their self-directed health care. The nominal group technique (NGT) has been identified as a method to gather opinions of people with cognitive disability; however, a synthesis of methodological considerations to undertake when employing the approach among people with cognitive disability is non-existent. Method: A systematic review guided by the preferred reporting items for systematic review and meta-analysis protocols was undertaken. Five databases (CINAHL, ISI Web of Science, ProQuest Social Science Journals, Scopus, and MEDLINE) were searched for peer-reviewed literature published before September 2016. Methodological considerations pertaining to the four stages of the NGT– generating ideas, recording ideas, clarification, and ranking – were extracted from each study. Results: Nine publications contributing to eight studies were included. Methodological considerations focused on (i) the number of participants within discussion groups, (ii) research question introduction, (iii) support individuals and accessible methods, (iv) ranking, and (v) researcher training and counselling services. Conclusions: The use of the NGT to gain the health care perspectives of adults with cognitive disability is promising. Conducting nominal group techniques informed by the methodological considerations identified within this review can work towards ensuring that the health care perspectives of people with cognitive disability are considered. Implications for rehabilitation The emergent policy move towards self-directed health care for people with disability requires that the health care perspectives of people with disability are considered. Effective consultation and discussion techniques are essential to gain the health care perspectives of people with cognitive disability. After undertaking methodological considerations, the NGT can be an effective approach towards gaining the health care perspectives of people with cognitive disability.

What housing features should inform the development of housing solutions for adults with neurological disability?: A systematic review of the literature

Abstract Despite the recent emphasis in Australian political, academic, and legislative narratives to more actively promote real housing choice for people with high healthcare and support needs, there is a lack of understanding regarding the specific housing features that might constitute better housing solutions for this population. Inclusive housing provision in Australia rightly emphasises safety and accessibility issues but often fails to incorporate factors related to broader psychosocial elements of housing such as dwelling location, neighbourhood quality, and overall design. While the importance of these broader elements appears obvious, it is not yet clear what specific housing features relate to these elements and how they might contribute to housing solutions for people with high healthcare and support needs. For individuals with complex neurological conditions such as brain injury or cerebral palsy, who require maximum support on a daily basis yet want to live independently and away from a primary care hospital or health facility, a more detailed understanding of the housing features that might influence design and development is needed. Thus, in order to clarify the broader factors related to housing solutions for this population, a systematic review was conducted to identify and synthesise the current research evidence (post‐2003) and guide future housing design and development opportunities. From the included studies (n=26), 198 unique housing features were identified. From the 198 features, 142 related to housing design (i.e., internal or external characteristics of the dwelling and its land), 12 related to the dwellings location (i.e., its proximity to available resources), and 54 related to the nature of the surrounding neighbourhood (i.e., the physical, social, and economic conditions of the area). The findings of this review contribute significantly to the literature by reporting a broader scope of relevant housing features for people with neurological disability, presenting preliminary guiding principles for housing design and development for this population, and identifying opportunities for future research. HighlightsFrom the included studies (n=26), 198 unique housing features were identified.The 198 features related to housing design, location, and neighbourhood.Well‐researched areas of housing for adults with neurological disability are described.Areas of housing currently lacking research evidence were identified.Preliminary guiding principles for housing design and development are presented.

USING THE AHP TO ESTABLISH INCLUSIVE HOUSING DEVELOPMENT PRIORITIES FOR INDUSTRY

The lack of inclusive housing options across the developed world means that many people with disability reside in housing which does not meet their physical and cognitive accessibility requirements, as well as their social and health care needs. This situation is partly due to a) a lack of understanding by designers and developers about what consumers want from their housing beyond the necessary physical access features and b) lack of multidisciplinary understanding of the various decisions or motivating drivers that might result in a development opportunity. In order to provide some decision clarity for the complex area of inclusive housing development, an AHP was used to determine the key priorities across a multidisciplinary group of stakeholders, including architects and designers, builders, disability service organisation professionals, and occupational therapists and access consultants. Despite some discipline variability, AHP results indicated three key drivers common to all stakeholder groups, namely, ‘connectedness of end users’, ‘feasibility’ and ‘building specifications’. The findings assert the importance of considering the needs of end users for inclusive housing development, a consideration that is often overlooked. The findings of this study will assist development of a resource manual to assist industry throughout inclusive housing development decision-making.

“Everything Happens in the Hallways”: Exploring User Activity in the Corridors at Two Rehabilitation Units

Objectives: This research aimed to examine the role of the corridors in specialist inpatient rehabilitation units to inform future design of these spaces. Background: In healthcare settings, such as rehabilitation units, corridors have often been designed simply as spaces allowing movement between other locations. However, research suggests that corridors may be places where important social and care-related activities take place. How corridors are used and understood by patients and staff in inpatient rehabilitation settings is unclear, and a greater understanding of the role of corridors in these settings could help to inform more supportive design of these spaces. Methods: Independent observations of user activity were conducted at a major metropolitan inpatient spinal injury unit (SIU) and brain injury unit (BIU). Interviews were conducted with SIU patients (n = 12), and focus groups were conducted with SIU staff (n = 23), BIU patients (n = 12), and BIU staff (n = 10). Results: Results from the observations showed that the corridors were used frequently across the day, particularly by staff. Thematic analysis of staff and patient experiences found three key themes describing how corridors were used: (1) moving around, (2) delivery and experiences of quality care, and (3) a “spillover space.” Conclusions: Results demonstrate that corridors not only have an important role as connective spaces but are also used as flexible, multipurpose spaces for delivery of quality care and patient experiences. Future design should consider how these spaces can more deliberately support and contribute to patient and staff experiences of rehabilitation.

Young people’s safety beliefs after a spinal cord injury health promotion and awareness presentation:

Objective: Adolescence is presented as a vulnerable period for accidental injury, particularly spinal cord injury, given young people’s propensity for risky behaviours. School-based health promotion initiatives provide opportunities for education about the risks associated with dangerous behaviours. In this study, we aimed to describe young people’s safety beliefs before and after a school-based spinal cord health promotion and awareness presentation. The effect of selected demographic characteristics on safety beliefs was also examined. Design: A pre–post design was used to record group and time point differences on a range of specific safety beliefs before and after the presentation. Setting and method: The Spinal Education and Awareness Team (SEAT) from Spinal Life Australia conducted a health promotion and awareness presentation with 1,410 students aged 14–19 years across 13 secondary schools in Queensland, Australia. Presentations took place in regional, metropolitan and provincial city schools. A survey assessing basic demographic characteristics and specific risk behaviours was completed by students before and after the presentation. Results: T-tests and chi-square analyses were conducted to examine time point and group differences in relation to the SEAT presentation and to determine relative risks between subgroups of young people. A total of 705 pre-surveys (50%) and 735 post-surveys (52%) were analysed. Overall, reported beliefs were significantly safer post-presentation compared to pre-presentation (all t > 6.93, p < .001). Rural adolescent boys licensed to drive emerged as a particularly risky sub-group and were over three times (odds ratio [OR] = 3.35, 95% confidence interval [CI] = 1.34, 8.40) more likely than their metropolitan peers to hold less safe beliefs relating to spinal cord injury. Conclusion: Findings indicated that the health promotion and awareness presentation increased awareness of spinal cord injury risk behaviours overall and improved adolescent-related safety beliefs. Licensed adolescent boys from rural areas reported little change in awareness post-presentation, further highlighting the importance of targeted health promotion initiatives in rural areas. Extended research is required to further explore the belief–behaviour interaction in this at-risk population.

Perspectives of the National Disability Insurance Scheme: Participants' knowledge and expectations of the scheme

Abstract Limited research investigates future participants’ perspectives of the National Disability Insurance Scheme (NDIS) – Australia’s first national attempt towards self-directed disability service provision. To identify future participants’ perspectives, seventy people with disability in South-East Queensland participated in an interview. Over half the participants demonstrated having little to no knowledge of the NDIS. Participants’ expected that: (i) they would make decisions around organising and paying support and (ii) that their current service provider would provide the support. Participants also indicated that training around budgeting and hiring would be essential to ensure their successfully engagement with the NDIS. The findings are timely and provide a first-hand account of how people with disability intend to engage with self-directed support programs. Findings also imply that targeted information dissemination and participant training and support are necessary to ensure their successful participation within self-directed programs.

Making every Australian count: challenges for the National Disability Insurance Scheme (NDIS) and the equal inclusion of homeless Aboriginal and Torres Strait Islander Peoples with neurocognitive disability

This article highlights the dearth of accurate evidence available to inform the National Disability Insurance Scheme (NDIS) regarding the extent and nature of neurocognitive disability amongst homeless Aboriginal and Torres Strait Islander people. Without accurate prevalence rates of neurocognitive disability, homeless Aboriginal and Torres Strait Islander people are in danger of not being counted by the NDIS and not receiving supports to which they are entitled. Addressing this knowledge gap is challenged by a range of factors, including: (1) the long-term effect of profound intergenerational disenfranchisement of Aboriginal and Torres Strait Islander people; (2) Aboriginal and Torres Strait Islander cultural perspectives around disability; (3) the generally unrecognised and poorly understood nature of neurocognitive disability; (4) the use of research methods that are not culturally safe; (5) research logistics; and (6) the absence of culturally appropriate assessment tools to identify prevalence. It is argued that an accurate evidence base that is informed by culturally safe research methods and assessment tools is needed to accurately guide the Commonwealth government and the National Disability Insurance Agency about the expected level of need for the NDIS. Research within this framework will contribute to the realisation of a truly inclusive NDIS.

Art processes: a research tool for acquired brain injury and residential design

Abstract Background: The creative process potentially complements the ABI condition. Given the potential of art to empower people with impaired cognitive capacity and communication skills, it was hypothesized that art therapy techniques could be used to ascertain the perspective of adults with ABI surrounding their housing and support preferences. Method: Visual research methods informed the research protocol reported in this paper. Participants’ pictures were created mainly using pastels on paper. Eight people (3 adults with ABI; 4 non-family paid carers; 1 researcher as participant observer) participated in this pilot study. Qualitative rigour was achieved by addressing the four principles of trustworthiness. Results: By analysing participants’ creative works in their entirety (i.e. image, text, and visual storytelling), key attributes of the ideal home or environment for adults with ABI were identified. The piloted arts-based process was also reflected upon. Conclusions: Art processes may give voice to people with limited capacity to verbalize.

Holistic Practice in Traumatic Brain Injury Rehabilitation: Perspectives of Health Practitioners

Given that the literature suggests there are various (and often contradictory) interpretations of holistic practice in brain injury rehabilitation and multiple complexities in its implementation (including complex setting, discipline, and client-base factors), this study aimed to examine the experiences of practitioners in their conceptualization and delivery of holistic practice in their respective settings. Nineteen health practitioners purposively sampled from an extensive Brain Injury Network in Queensland, Australia participated in individual interviews. A systematic text analysis process using Leximancer qualitative analysis program was undertaken, followed by manual thematic analysis to develop overarching themes. The findings from this study have identified several items for future inter-professional development that will not only benefit the practitioners working in brain injury rehabilitation settings, but the patients and their families as well.

A place to call my own: Young people with complex disabilities living in long-term care

ABSTRACT It is important to consider the nature of home in more detail when thinking about living environments for vulnerable groups of people, especially as it has been found that the nature of home can impact on the quality of life. The aim of this study was to understand the “lived experience” of home for a group of young people with complex disabilities who had recently relocated to a specially designed residential apartment building. Multiple domains of home, as they were experienced over time, were examined through a series of semi-structured interviews conducted with seven residents at their apartments. The findings revealed two major themes (“perceived quality of the place” and “identity in place”) that were inextricably interlinked. To the extent that they overlapped, the experience of home was enhanced. The interaction between the two themes was associated with a dynamic ongoing process whereby the sense of home was either created or damaged (“deconstruction and reconstruction of home”). The current study has implications for how residential care workers are trained and supported if the well-being of individuals with complex disabilities is to be promoted within residential settings.