AUT Person Centred Rehabilitation Research Centre

Permanent link for this collectionhttp://hdl.handle.net/10292/19256

The Person Centred Rehabilitation Research Centre is a transdisciplinary research centre based in the School of Allied Health at AUT. [This collection is currently in the process of being developed].

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What Are the Core Features of Stroke Care That Support Well-being? A Qualitative Study From the Perspectives of People With Stroke, Whānau, and Stroke Care Providers in Aotearoa New Zealand
(BMJ Publishing Group, 2025-11-27) Bright, Felicity; Ibell-Roberts, Claire
Objectives: To identify the core attributes of quality care that supports well-being from the perspectives of those who access, and provide, stroke services. Design: Qualitative Interpretive Description study design involving in-depth semi-structured individual and group interviews and analysis using journey mapping and conventional content analysis. Participants: 24 people with stroke, 13 family/whānau members and 34 healthcare professionals located throughout New Zealand. Setting: Participants were recruited through health services, stroke support organisations, and professional networks. Interviews were completed in person at people’s homes or workplaces or on an online videoconference. Results: Analysis generated a quality framework of domains. High quality care that supports well-being after stroke in Aotearoa: supports people through uncertainty; fosters a sense of belonging; prioritises relationships and connecting ‘as people’; attends to the emotional aspects of stroke; centres people’s preferences and supports people to have choice and control; honours Māori knowledges and practices; responds to the strengths and needs of friends and whānau; and attends to people’s holistic long-term well-being. Conclusions: This study offers a framework for considering holistic stroke care that supports areas of need not consistently addressed in stroke service. This framework can help structure practice and policy and can underpin future research in well-being.
Exploring Strategies Used Following a Group-Based Fatigue Management Programme for People with Multiple Sclerosis (FACETS) via the Fatigue Management Strategies Questionnaire (FMSQ)
(BMJ, 2015-10-20) Thomas, S; Kersten, P; Thomas, PW; Slingsby, V; Nock, A; Jones, R; Smith, AD; Galvin, KT; Baker, R; Hillier, C
Objectives: To explore cross-sectional patterns of use of fatigue management strategies in people with multiple sclerosis (MS) who had attended a groupbased fatigue management programme, Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle ('FACETS'). In a multicentre randomised controlled trial (RCT) the FACETS programme was shown to reduce fatigue severity and improve self-efficacy and quality of life. Design: A questionnaire substudy within a RCT involving the self-completed Fatigue Management Strategies Questionnaire (FMSQ). The FMSQ includes: (1) closed questions about the use and helpfulness of fatigue management strategies taught in FACETS and (2) open items about changes to lifestyle, attitudes or expectations, barriers or difficulties encountered and helpful strategies not covered in FACETS. Participants: All had a clinical diagnosis of MS, significant fatigue, were ambulatory and had attended at least 4 of 6 scheduled FACETS sessions. Methods: Participants (n=72) were posted the FMSQ with a prepaid return envelope 4 months after the end of the FACETS programme. Results: 82% (59/72) of participants returned the FMSQ. The fatigue management strategies most frequently used since attending FACETS were prioritisation (80%), pacing (78%), saying no to others (78%), grading tasks (75%) and challenging unhelpful thoughts (71%). Adding in those participants who were already using the respective strategies prior to FACETS, the three most used strategies at 4 months were prioritisation (55/59), grading (54/59) and pacing (53/58). Free-text comments illustrated the complex interplay between attitudes/expectations, behaviours, emotions and the environment. Issues related to expectations featured strongly in participants' comments. Expectations (from self and others) were both facilitators and barriers to effective fatigue management. Conclusions: Individuals' comments highlighted the complex, multifaceted nature of fatigue management. Revising expectations and a greater acceptance of fatigue were important shifts following the programme. Findings support the relevance of a cognitive behavioural approach for fatigue management. Booster sessions might be a useful addition to the FACETS programme.
Improving the Assessment of Quality of Life in the Clinical Care of Myeloma Patients: The Development and Validation of the Myeloma Patient Outcome Scale (MyPOS)
(BioMed Central Ltd., 2015-04-14) Osborne, TR; Ramsenthaler, C; Schey, SA; Siegert, RJ; Edmonds, PM; Higginson, IJ
Background: Multiple myeloma is an incurable cancer with a rising incidence globally. Less toxic treatments are increasingly available, so patients are living longer and treatment decisions are increasingly guided by QOL concerns. There is no QOL assessment tool designed specifically for use in the clinical care of people with myeloma. This study aimed to develop and test the psychometric properties of a new myeloma-specific QOL questionnaire designed specifically for use in the clinical setting - the MyPOS. Methods: The MyPOS was developed using findings from a previously reported literature review and qualitative study. The prototype MyPOS was pretested using cognitive interviews in a purposive sample of myeloma patients and refined prior to field testing. The psychometric properties of the MyPOS were evaluated in a multi-centre, cross sectional survey of myeloma patients recruited from 14 hospital trusts across England. Results: The prototype MyPOS contained 33 structured and open questions. These were refined using cognitive interviews with 12 patients, and the final MyPOS contained 30 items taken forward for field-testing. The cross-sectional survey recruited 380 patients for the MyPOS validation. Mean time to complete was 7 minutes 19 seconds with 0.58% missing MyPOS items overall. Internal consistency was high (α =0.89). Factor analysis confirmed three subscales: Symptoms & Function; Emotional Response and Healthcare Support. MyPOS total scores were higher (worse QOL) in those with active disease compared to those in the stable or plateau phase (F = 11.89, p < 0.001) and were worse in those currently receiving chemotherapy (t = 3.42, p = 0.001). Scores in the Symptoms & Function subscale were higher (worse QOL) in those with worse ECOG performance status (F = 31.33, p < 0.001). Good convergent and discriminant validity were demonstrated. Conclusions: The MyPOS is the first myeloma-specific QOL questionnaire designed specifically for use in the clinical setting. The MyPOS is based on qualitative enquiry and the issues most important to patients. It is a brief, comprehensive and acceptable tool that is reliable and valid on psychometric testing. The MyPOS can now be used to support clinical decision making in the routine care of myeloma patients.
The Multiple Sclerosis-Fatigue Self-Efficacy (MS-FSE) Scale: Initial Validation
(SAGE Publications, 2014-08-26) Thomas, S; Kersten, P; Thomas, PW
Objective: To examine the validity and sensitivity to change of the Multiple Sclerosis-Fatigue Self-Efficacy scale. Design: A validation study nested within a randomized controlled trial. Setting: Community setting. Participants: Adults with a clinically definite diagnosis of multiple sclerosis and significant fatigue taking part in a randomized controlled trial evaluating a group-based fatigue management programme (FACETS) for people with multiple sclerosis (N=164). Main measures: The 9-item Multiple Sclerosis-Fatigue Self-Efficacy scale was completed at baseline, 1-, 4- and 12 months post intervention. Validity, internal consistency and sensitivity to change were examined using classical test theory and Rasch analysis. Results: Item 3 was unanswered by 6% of respondents as they did not know any other people with multiple sclerosis; remaining analyses were carried out with this item deleted. All response choices were utilised, no floor or ceiling effects were evident and there were few missing responses. Cronbach’s alphas were high (baseline, 0.89; follow-up 1, 0.93; follow-up 2, 0.94; follow-up 3, 0.90). The Multiple Sclerosis-Fatigue Self-Efficacy scale (8-item) demonstrated good sensitivity to change following attendance of the FACETS programme (within participant effect sizes 0.66 and 0.69 and 0.54 at 1, 4, and 12 months follow-up). Principal Components Analysis yielded one component. In the Rasch analysis two items with disordered thresholds were rescored. Item 8 displayed differential item functioning by disability and was combined into a testlet with item 4, resulting in a unidimensional scale. The sample was well targeted to the scale. Conclusion: At a scale level the Multiple Sclerosis-Fatigue Self-Efficacy scale is internally valid and has good sensitivity to change.
Experiences of Sensory Input in Daily Occupations for People with Serious Mental Illness
(Informa UK Limited, 2020) Andersson, H; Sutton, D; Bejerholm, U; Argentzell, E
Background There is growing evidence that people with serious mental illness have impaired capacity for processing sensory inputs which affects daily occupation. Although this is known, research regarding the target groups experiences of sensory inputs in daily occupations is lacking. Aim To investigate the experience of sensory input and strategies used in daily occupations among people with serious mental illness. Material and methods Fourteen people with serious mental illness were interviewed regarding their experiences of sensory processing and strategies for managing sensory inputs in daily occupations. Data were analysed using content analysis. Results Sensory processing issues affected occupational engagement and strategies to control inputs were intuitively used to cope with sensory challenges. Informants either ignored, reduced or avoided sensory inputs. Informants also enabled daily life through strategies such as creating a home that provides rest, finding a safe place, using nature and animals for relaxing and using effects of calming and alerting occupations. Discussion Specific sensory inputs were difficult to process, which was experienced as stressful and affected occupations negatively. The results imply a need for further research exploring the management of sensory input and the use of sensory modulation approaches to enable engagement in daily activities.
Design Considerations for a Multiple Sclerosis Fatigue Mobile App MS Energize: A Pragmatic Iterative Approach Using Usability Testing and Resonance Checks
(Elsevier, 2021-04-01) van Kessel, K; Babbage, D; Kersten, P; Drown, J; Sezier, A; Thomas, PW; Thomas, S
Multiple sclerosis (MS) is a chronic neurological condition affecting around 2.2 million people worldwide. The illness includes a range of symptoms, with fatigue considered to be one of the most disabling. This paper describes how a pragmatic and iterative approach, supported by usability and resonance testing, was used to build a minimum viable product of MS Energize—or MS Energise in UK English regions. MS Energise is a mobile application focused on self-management of fatigue for people with MS. The iterative approach included various stages of testing, during which user feedback including comments about interface, navigation and content, was sought to inform incremental app development and continual improvement. Usability testing was conducted with 11 people with longstanding multiple sclerosis in New Zealand and the United Kingdom, and focused on particular sections of the app as well as the accessibility of the app to users with MS. Two participants contributed to further resonance testing post-release to ensure the app was perceived as relevant and useful to the user. The usability testing and resonance testing phases suggested that user experience of MS Energise was mostly positive. Participants provided a number of suggestions for improvements to aspects of content and design; some of which we implemented during our app development process. Findings will also contribute to future planning and design iteration to enhance the user experience. The next step is further improvement of MS Energise prior to a trial of its clinical and cost effectiveness.
Coping Strategies During the COVID-19 Pandemic and Compliance with Precautionary Health Behaviors: An Online Study Among the Saudi Adult Population
(Medknow, 2021) Alyami, H; Alyami, M; Krägeloh, Chris; Nemenqani, D; Henning, M
Background: The COVID-19 pandemic has caused major morbidity and mortality internationally. Most governments worldwide have enforced precautionary health measures such as social distancing, hand hygiene, and wearing gloves to limit the spread of this disease. In response to major health and economic stressors, individuals exhibit a range of different coping styles. Aim: The aim of this study is to identify coping strategies that are predictive of compliance with pandemic-related precautionary health behaviors in Saudi Arabia. Settings: A cross-sectional study was conducted online with a total of 1029 Saudi adult participants. Materials and Methods: The Brief Coping Orientation to Problems Experienced (COPE) questionnaire was administered as well as appraising the level of compliance with the Saudi Ministry of Health precautionary measures. Multiple regression analyses explored the associations between coping styles and precautionary health behavior compliance. Statistical Analysis: Multivariate multiple regression and linear regression analyses were used to analyze the data. Results: The active coping and religion Brief COPE subscales as well as age predicted compliance with all precautionary measures. The behavioral disengagement Brief COPE subscale predicted hand washing and social distancing while the substance use Brief COPE subscale and sex predicted wearing gloves. Conclusion: Compliance with COVID-19-related precautionary health behaviors is driven by different coping styles. Active coping and religion appeared to influence all three health behaviors which might guide public health officials in their efforts to develop effective public health campaigns, which further suggests the importance of involving the religious institutions in Saudi Arabia.
Sex-based Differences in Affective and Cognitive Empathy Following Severe Traumatic Brain Injury
(American Psychological Association, 2018-07-01) Zupan, B; Neumann, D; Babbage, D; Willer, B
Objective: To examine sex differences in self-ratings for affective and cognitive empathy for males and females with traumatic brain injury (TBI) and compare these to observer ratings. Method: Self and observer (e.g., spouse) ratings of affective and cognitive empathy were obtained for 160 participants (116 males) with severe TBI, using the Interpersonal Reactivity Index Empathic Concern (EC) and Perspective Taking (PT) subscales, respectively. Results: When compared to sex norms, female self-ratings were significantly lower for both subscales, whereas men's self-report ratings were only lower for PT. For EC, more women (44%) were found to be substantially below the normative means (≥2 SDs) than men (17%), p < .001. When comparing women and men with TBI, self-report and observer ratings indicated both sexes had similar empathy levels (both subscales). Self versus observer ratings showed that women's self-ratings were significantly higher than observer's ratings on PT (p < .001); men's self-ratings were significantly higher than observer's ratings on PT (p < .001) and EC (p = .009). Conclusions: In contrast to the typically observed superior female empathy, this study suggests this advantage may disappear after a TBI, and possibly result in a disadvantage compared to their uninjured female peers. Theoretical implications of self-awareness and cultural gender expectations for empathy are discussed.
Network Analysis of Mindfulness Facets, Affect, Compassion, and Distress
(Springer, 2020-11-26) Medvedev, Oleg; Cervin, M; Barcaccia, B; Siegert, RJ; Roemer, A; Krägeloh, Chris
Objectives: Mindfulness, positive affect, and compassion may protect against psychological distress but there is lack of understanding about the ways in which these factors are linked to mental health. Network analysis is a statistical method used to investigate complex associations among constructs in a single network and is particularly suitable for this purpose. The aim of this study was to explore how mindfulness facets, affect, and compassion were linked to psychological distress using network analysis. Methods: The sample (n = 400) included equal numbers from general and student populations who completed measures of five mindfulness facets, compassion, positive and negative affect, depression, anxiety, and stress. Network analysis was used to explore the direct associations between these variables. Results: Compassion was directly related to positive affect, which in turn was strongly and inversely related to depression and positively related to the observing and describing facets of mindfulness. The non-judgment facet of mindfulness was strongly and inversely related to negative affect, anxiety, and depression, while non-reactivity and acting with awareness were inversely associated with stress and anxiety, respectively. Strong associations were found between all distress variables. Conclusions: The present network analysis highlights the strong link between compassion and positive affect and suggests that observing and describing the world through the lens of compassion may enhance resilience to depression. Taking a non-judging and non-reacting stance toward internal experience while acting with awareness may protect against psychological distress. Applicability of these findings can be examined in experimental studies aiming to prevent distress and enhance psychological well-being.
New Zealand Physiotherapists’ and General Practitioners’ Treatment Knowledge and Referral Decisions for Knee Osteoarthritis: A Vignette-Based Study
(Physiotherapy New Zealand, 2021) O'Brien, DW; Siegert, RJ; Bassett, S; Baldwin, JN; Wright-St Clair, V
Physiotherapists’ and general practitioners’ (GPs) treatment knowledge affects the management of people with knee osteoarthritis (OA), but little is known about the OA referral decisions and treatment knowledge of these clinicians in New Zealand. Data were collected from New Zealand registered physiotherapists and GPs (n = 272) using an online vignette-based questionnaire. Approximately two-thirds (63%, n = 172) of participants stated they would likely refer the hypothetical patient with knee OA to another profession. Participants indicated they would refer the woman between the two professions (73%, n = 57 GPs would refer to a physiotherapist; 47%, n = 92 physiotherapists would refer to a GP). However, few participants indicated they would refer the woman to other health professionals (such as 19%, n = 52 would refer to a dietitian). The majority of participants reported they would recommend education (98%, n = 267), therapeutic exercises (92%, n = 251) and weight-loss advice (87%, n = 237) as treatments for knee OA. These results indicate that first-line knee OA treatment knowledge of New Zealand GPs and physiotherapists are generally in keeping within international guidelines. However, promoting interprofessional collaboration with other health professions, such as dietetics, and providing education regarding treatments not recommended for OA is needed to meet all first-line treatment recommendations.
Educating Emergency Department Nurses About Trauma Informed Care for People Presenting with Mental Health Crisis: A Pilot Study
(BioMed Central Ltd., 2016-03-24) Hall, A; McKenna, B; Dearie, V; Maguire, T; Charleston, R; Furness, T
Background: Practicing with trauma informed care (TIC) can strengthen nurses' knowledge about the association of past trauma and the impact of trauma on the patient's current mental illness. An aim of TIC is to avoid potentially re-traumatising a patient during their episode of care. A TIC education package can provide nurses with content that describes the interplay of neurological, biological, psychological, and social effects of trauma that may reduce the likelihood of re-traumatisation. Although mental health nurses can be TIC leads in multidisciplinary environments, the translation of TIC into clinical practice by nurses working in emergency departments (EDs) is unknown. However, before ED nurses can begin to practice TIC, they must first be provided with meaningful and specific education about TIC. Therefore, the aims of this study were to; (1) evaluate the effectiveness of TIC education for ED nursing staff and (2) describe subsequent clinical practice that was trauma informed. Methods: This project was conducted as exploratory research with a mixed methods design. Quantitative data were collected with an 18-item pre-education and post-education questionnaire. Qualitative data were collected with two one-off focus groups conducted at least three-months after the TIC education. Two EDs were involved in the study. Results: A total of 34 ED nurses participated in the TIC education and 14 ED nurses participated in the focus groups. There was meaningful change (p < 0.01, r ≥ 0.35) in 9 of the 18-items after TIC education. Two themes, each with two sub-themes, were evident in the data. The themes were based on the perceived effectiveness of TIC education and the subsequent changes in clinical practice in the period after TIC education. Conclusion: Emergency department nurses became more informed of the interplay of trauma on an individual's mental health. However, providing care with a TIC framework in an ED setting was a considerable challenge primarily due to time constraints relative to the day-to-day ED environment and rapid turnover of patients with potentially multiple and complex presentations. Despite this, nurses understood the effect of TIC to reduce the likelihood of re-traumatisation and expressed a desire to use a TIC framework.
The Nijmegen Questionnaire: A Valid Measure for Hyperventilation Syndrome
(New Zealand Journal of Physiotherapy, 2019-01-01) Li Ogilvie, V; Kayes, NM; Kersten, P
Hyperventilation syndrome is often undiagnosed due to its multi-systemic and apparently unrelated symptoms. The Nijmegen Questionnaire is used by clinicians to assess susceptible individuals, based on self-reporting symptoms attributed to hyperventilation syndrome. However, evidence of the psychometric properties of this questionnaire is lacking. This study investigated two types of validity using interviews and Rasch analysis. Data showed that the Nijmegen Questionnaire met criteria for content validity but not for structural validity. Content validity was supported by a high matching percentage between the symptoms identified within interview data and the current items on the Nijmegen Questionnaire (94%). Reported symptoms from study participants were conceptually congruent with most of the questionnaire items, with minor language inconsistencies between patients and clinicians. Rasch analysis indicated a poor fit of the Nijmegen Questionnaire to the Rasch model, demonstrating poor structural validity. This study also developed a revised 15-item version of the Nijmegen Questionnaire, which met criteria for structural validity. Subsequently, a conversion table was created for transforming raw total scores of the questionnaire in the clinical and research settings. Physiotherapists should use the revised 15-item Nijmegen Questionnaire for clinical and research purposes since it provides more accurate representation of the severity of patients’ symptoms than the original scoring.
Person Centered Care in Neurorehabilitation: A Secondary Analysis
(Taylor & Francis, 2019-01-29) Terry, Gareth; Kayes, NM
Person centered care has been described as being in its ascendency, despite some of the complexities of embedding it within healthcare systems. The emphasis of research now seems to be moving toward the promotion of cultures of care that support the efforts of practitioners. Informed by some of the principles of positive deviancy, where some of the solutions for change can be found within existing cultures and practices, this paper aimed to identify examples of person-centered care in existing practice. Reporting on a thematic analysis of qualitative datasets from three preexisting projects, we constructed four themes from these data: (1) That patient experience and needs should always be understood in terms of their difficult new reality; (2) the need for a relational orientation in care; (3) the importance of treating trust as a currency; and, (4) efficacy in rehabilitation is co-constructed, and enabled by the efforts of clinicians. Identifying positive examples of care, enacted irrespective of the framework of care they are found within, may provide opportunities to critically reflect on practice. The context for care and the extent to which that context constrains or makes possible person-centered care in practice will also be discussed.IMPLICATIONS FOR REHABILITATION Cultures of care are central to enhancing person-centered practice. Care begins with recognition of patient’s difficult new reality. Building trust helps enable capacity for improvement.
Mobility Barriers and Enablers and Their Implications for the Wellbeing of Disabled Children and Young People in Aotearoa New Zealand: A Cross-Sectional Qualitative Study
(Elsevier BV, 2021) Smith, M; Calder-Dawe, O; Carroll, P; Kayes, NM; Kearns, R; Lin, E-Y (Judy); Witten, K
Active participation in community and cultural life is a basic right of all children and young people (CYP) and is central to wellbeing. For disabled CYP, mobility can be constrained through a range of environmental and social/attitudinal barriers. The aim of this research was to understand the enablers and barriers to mobility from the perspectives of disabled CYP. Thirty-five disabled CYP aged between 12 and 25 years took part. Data were collected in Tāmaki Makaurau Auckland, Aotearoa New Zealand from mid-2016 to early 2018. Face-to-face interviews and go-along interviews were conducted and were transcribed verbatim. An iterative, thematic approach to analysis was undertaken. Mobility played an essential role in enabling wellbeing, connecting CYP to people, places and possibilities. While the possible impediments to smooth transit appeared infinite, numerous examples of overcoming barriers to mobility were evidenced across a range of factors. Dis/ableism was a pervasive barrier to mobility. The rights to access and experience the city for young people in this study were compromised by transport networks and social norms as well as values that privilege the movement of non-disabled bodies. The findings demonstrate that reducing ableist presumptions about preferences and abilities of disabled CYP, alongside ensuring practical enablers across the transport system must be key priorities for enhancing the wellbeing of this group.
Is the Assumption of the Autonomous Individual Holding Us Back in Vocational Rehabilitation?
(Emory University, 2021-12-17) Fadyl, Joanna; Reid, L; Cummins, Christine; Gibson, BE
Despite a move toward sophisticated conceptual work in the field of vocational rehabilitation, an assumption that the subjects of intervention are autonomous ‘individuals’ continues to be taken for granted. This has many effects, including how services are funded and the way that practitioners think about what it is they do; these effects flow on into what is possible for people who experience disability. Although the field of vocational rehabilitation is not the origin of the assumption of the autonomous individual, it may be a useful place for challenging it. This article provides a brief analysis of the assumption and its effects, with the purpose of exploring what it makes visible, and where a focus for action could be.
Enhancing the Multi-dimensional Assessment of Quality of Life: Introducing the WHOQOL-Combi
(Springer Nature, 2020-12-17) Skevington, SM; Rowland, C; Panagioti, M; Bower, P; Krägeloh, Chris
Introduction: We revisited the global concept of subjective quality of life (QoL) as assessed by the WHOQOL-BREF to investigate whether it could be elaborated into a conceptually more comprehensive instrument with good psychometric properties. Responding to a growing need for shorter QoL measures with broader social, spiritual and environmental contents, facets from WHOQOL international modules were examined for potential integration into the new WHOQOL-Combi. Method: Adults over 65 years, diagnosed with one or more chronic diseases (n = 2833), completed 41 WHOQOL items during the CLASSIC survey; each item represented a WHOQOL facet. This pool of specific QoL facets contained 24 from the WHOQOL-BREF (excluding general items), and 17 from recent international WHOQOL short-form modules, selected for their generic properties. Rasch modelling reduced the final item pool when assessing the WHOQOL-Combi’s conceptual structure. Comparisons are made with the WHOQOL-BREF. Results: Modelling confirmed the tenability of a 36-item solution scored as a five-domain profile, comprised of 24 WHOQOL-BREF facets and 12 new facets from modules. Social and psychological domains were strengthened by three facets, spiritual QoL by five, and physical QoL by one. The WHOQOL-Combi showed sound model fit, excellent internal consistency (α =.95), and scores discriminated between socio-demographic categories. Concurrent validity with the EQ-5D-5L was confirmed for physical and psychological domains. Performance was similar to the WHOQOL-BREF. Conclusion: The WHOQOL-Combi offers a contemporary, comprehensive, integrated, multi-dimensional subjective QoL instrument with enhanced evaluations of social, spiritual, psychological and physical QoL. Acceptable to older people, future research should evaluate younger age groups and other cultures.
Governing Neurorehabilitation
(Informa UK Limited, 2021-05-14) Cummins, Christine; Payne, D; Kayes, NM
Purpose Person centred approaches to rehabilitation are promoted as an ethical means of addressing paternalistic power relations in clinician dominated medical encounters and improving outcomes. However, they fail to account for the complex nature of power. We sought alternative ways to explain the use of power in health service provision. Methods A poststructural discourse analysis using the view of power offered by Michel Foucault was undertaken. Foucault’s concept of governmentality is useful to explain the way health services deploy technologies of power to achieve objectives of the state. Governmentality refers to not just political structures but all the strategies and procedures for directing human behaviour. Results Our investigation uncovered a web of strategic relationships operating that were both potentially productive and problematic and illuminate how client centred approaches in neurorehabilitation intertwines its subjects in strategic power relationships that involve webs of obligations and responsibilities. Conclusion The client-professional relationship promoted in neurorehabilitation as a moral way to practice can be a tool for mastery of one over the other, and assist the client to achieve their desired ends, but also has the potential to marginalise others who are unable to shape themselves into the desired ideal client. Implications for rehabilitation This analysis shows how power is subtle and productive in that it produces knowledge and roles for both clients and practitioners. It demonstrates how neurorehabilitation’s disciplinary practices assist the client to achieve their recovery goals. It reveals how certain clients might be marginalised when they cannot shape themselves into the ideal rehabilitation client. As a final point we hope that by being aware of how power works in neurorehabilitation, practitioners can become aware of opportunities for challenging disciplinary practices that do not serve the best interest of the client.
Optimising Function and Well-Being in Older Adults: Protocol for an Integrated Research Programme in Aotearoa/New Zealand.
(BioMed Central, 2022-03-16) Lord, S; Teh, R; Gibson, R; Smith, M; Wrapson, Wendy; Thomson, M; Rolleston, A; Neville, S; McBain, L; Del Din, S; Taylor, L; Kayes, NM; Kingston, A; Abey-Nesbit, R; Kerse, Ngaire; AWESSoM Project Team
BACKGROUND: Maintaining independence is of key importance to older people. Ways to enable health strategies, strengthen and support whanāu (family) at the community level are needed. The Ageing Well through Eating, Sleeping, Socialising and Mobility (AWESSOM) programme in Aotearoa/New Zealand (NZ) delivers five integrated studies across different ethnicities and ages to optimise well-being and to reverse the trajectory of functional decline and dependence associated with ageing. METHODS: Well-being, independence and the trajectory of dependence are constructs viewed differently according to ethnicity, age, and socio-cultural circumstance. For each AWESSoM study these constructs are defined and guide study development through collaboration with a wide range of stakeholders, and with reference to current evidence. The Compression of Functional Decline model (CFD) underpins aspects of the programme. Interventions vary to optimise engagement and include a co-developed whānau (family) centred initiative (Ngā Pou o Rongo), the use of a novel LifeCurve™App to support behavioural change, development of health and social initiatives to support Pacific elders, and the use of a comprehensive oral health and cognitive stimulation programme for cohorts in aged residential care. Running parallel to these interventions is analysis of large data sets from primary care providers and national health databases to understand complex multi-morbidities and identify those at risk of adverse outcomes. Themes or target areas of sleep, physical activity, oral health, and social connectedness complement social capital and community integration in a balanced programme involving older people across the ability spectrum. DISCUSSION: AWESSoM delivers a programme of bespoke yet integrated studies. Outcomes and process analysis from this research will inform about novel approaches to implement relevant, socio-cultural interventions to optimise well-being and health, and to reverse the trajectory of decline experienced with age. TRIAL REGISTRATION: The At-risk cohort study was registered by the Australian New Zealand Clinical Trials registry on 08/12/2021 (Registration number ACTRN 12621001679875 ).
Exploring the Value and Role of Creative Practices in Research Co-production
(Bristol University Press, 2022-04-11) Langley, J; Kayes, NM; Gwilt, I; Snelgrove-Clarke, E; Smith, S; Craig, C
Developing Connections for Engagement in Stroke Rehabilitation
(Cambridge University Press, 2021-12-27) Kayes, NM; Cummins, Christine; McPherson, KM; Worrall, L; Bright, Felicity
Background and Aims: Engagement is increasingly recognised as important for maximising rehabilitation outcome following stroke. However, engagement can be challenging when neurological impairment impacts a persons' ability to activate the regulatory processes necessary for engagement and in the context of a changed self. We explored engagement in stroke rehabilitation from the perspective of people with stroke with a primary focus on identifying key processes that appeared important to engagement in stroke rehabilitation. Design and Methods: This study drew on Interpretive Description methodology. Maximum variation and theoretical sampling were used to capture diversity in the sample and access a depth and breadth of perspectives. Data collection included semi-structured interviews with people with stroke (n = 19). Data were analysed through a collaborative and iterative process drawing on range of analytical tools including coding, memoing, diagramming and group discussions. Findings: Our findings highlight that engagement is a complex, nuanced, responsive, flexible and inherently two-way process. Developing connections appeared central to engagement with connections taking various forms. The most fundamental was the therapeutic connection between the person with stroke and their practitioner as it provided the foundation on which to build other connections. Connection was made possible through five collaborative processes: Knowing, Entrusting, Adapting, Investing and Reciprocating. Conclusions: Engagement is a social and relational process enabled through an inherently person-centred approach and active and ongoing reflexivity - highlighting the importance of a humanising approach to care where aspects of self, care and emotion are evident, for both the person with stroke and their practitioner.

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