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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Understanding the Complexities of Recruitment and Retention of Allied Health Professionals in Rural Health Settings Across Aotearoa: A Qualitative Study
(BMC, 2026-01-30) George, Jane; Kayes, Nicola; Larmer, Peter
Background: Rural and remote communities in Aotearoa New Zealand face significant challenges in recruiting and retaining Allied Health Professionals (AHPs). While targeted investment exists to increase the numbers of doctors and nurses entering the rural workforce, comparatively little attention has been given to Allied Health Scientific and Technical professions. This study aimed to explore what matters to AHPs’ in rural contexts and how these insights could inform recruitment and retention practices. Methods: Drawing on Interpretive Descriptive methodology, semi-structured interviews were conducted with 18 AHPs from diverse professions, ethnicities and geographical locations across Aotearoa who had experience working in rural and/or remote settings. All participants were female, ranging in age from 23 to 63 years, representing seven allied health professions; social work (n = 7), physiotherapy (n = 4), occupational therapy (n = 2), music therapy (n = 2), psychology (n = 1), dietetics (n = 1), and pharmacy (n = 1). Participants identified as Pākehā | New Zealander (n = 11), Māori (n = 4), Samoan (n = 1), and beyond the Pacific (n = 2). Interviews explored career journeys, rural practice experiences, and employment decision factors. Data were analysed using six-phase Reflexive Thematic Analysis with ongoing researcher reflexivity and supervisory input. Results: Three key themes were constructed: (1) Sense of Connection and Belonging, highlighting the importance of feeling connected to teams, community and place; (2) Safe and Supported Practice, emphasising appropriate resources, professional development, and leadership relationships; (3) Creating Roles People Want to Come For, encompassing recruitment experiences, variety of work, growth pathways and scope of practice. These themes were infused with a cross-cutting concept of ‘Fit’, a felt sense of being in the right place, personally and professionally that emerged as a protective factor during challenges and key element for retention decisions. Conclusion: Successful recruitment and retention requires attention to both professional and personal factors, with particular emphasis on creating environments where AHPs feel valued, supported to develop their practice, and connected to their communities. The Fit concept offers a novel framework integrating professional, personal and place-based elements for understanding rural workforce retention. These insights provide evidence-based guidance for health policy makers, rural health organisations, professional bodies and tertiary education providers seeking to address persistent rural workforce shortages.
Communities With Participation-Enabling Skills: A Study of Children With Traumatic Brain Injury and Their Shared Occupations
(Routledge, 2016-08-30) Jones, M; Hocking, C; McPherson, K
Many ideas about participation in rehabilitation literature focus inwards towards individuals, or individuals and their family, acting in but apart from their environment. Authors position individuals as “participating in” occupations or social settings, or point towards the outcomes for those who do or do not participate. This perspective arguably contributes to occupational injustices, hampering positive change. Literature has not furnished a broader gaze that appreciates individuals and their participation context as one. Actions that occur amongst people collectively with context, in an ongoing cycle of change, receive little attention. Guided by a Deweyan transactional perspective, six case studies exploring the participation of 9–12 year old children with traumatic brain injury generated more contextualised understandings. Interviews with children and community members, photographs, observations, and document-review provided information about actions and changes occurring amongst children and their environment, where these were seen as continuous with one another. This paper describes the Participation-enabling skills that were revealed amongst children and adults who shared in occupations. Community members demonstrated varying ability in using actions that facilitated both themselves and others to take part in occupations. The Participation-enabling skills were fostered during shared occupation. The congruence of the skills with themes in occupational science and therapy literature is explored, and their relevance to social change is proposed.
Longitudinal Validity and Reliability of the Myeloma Patient Outcome Scale (MyPOS) Was Established Using Traditional, Generalizability and Rasch Psychometric Methods
(Springer, 2017-11-01) Ramsenthaler, C; Gao, W; Siegert, RJ; Schey, SA; Edmonds, PM; Higginson, IJ
Purpose: The Myeloma Patient Outcome Scale (MyPOS) was developed to measure quality of life in routine clinical care. The aim of this study was to determine its longitudinal validity, reliability, responsiveness to change and its acceptability. Methods: This 14-centre study recruited patients with multiple myeloma. At baseline and then every two months for 5 assessments, patients completed the MyPOS. Psychometric properties evaluated were as follows: (a) confirmatory factor analysis and scaling assumptions (b) reliability: Generalizability theory and Rasch analysis, (c) responsiveness and minimally important difference (MID) relating changes in scores between baseline and subsequent assessments to an external criterion, (d) determining the acceptability of self-monitoring. Results: 238 patients with multiple myeloma were recruited. Confirmatory factor analysis found three subscales; criteria for scaling assumptions were satisfied except for gastrointestinal items and the Healthcare support scale. Rasch analysis identified limitations of suboptimal scale-to-sample targeting, resulting in floor effects. Test–retest reliability indices were good (R = > 0.97). Responsiveness analysis yielded an MID of +2.5 for improvement and -4.5 for deterioration. Conclusions: The MyPOS demonstrated good longitudinal measurement properties, with potential areas for revision being the Healthcare Support subscale and the rating scale. The new psychometric approaches should be used for testing validity of monitoring in clinical settings.
The UK Functional Assessment Measure (UK FIM+FAM): Psychometric Evaluation in Patients Undergoing Specialist Rehabilitation Following a Stroke From the National UK Clinical Dataset
(Public Library of Science, 2016-01-29) Nayar, M; Vanderstay, R; Siegert, RJ; Turner-Stokes, L
The UK Functional Assessment Measure (UKFIM+FAM) is the principal outcome measure for the UK Rehabilitation Outcomes Collaborative (UKROC) national database for specialist rehabilitation. Previously validated in a mixed neurorehabilitation cohort, this study is the first to explore its psychometric properties in a stroke population, and compare left and right hemispheric strokes (LHS vs RHS). We analysed in-patient episode data from 62 specialist rehabilitation units collated through the UKROC database 2010-2013. Complete data were analysed for 1,539 stroke patients (LHS: 588, RHS: 566 with clear localisation). For factor analysis, admission and discharge data were pooled and randomised into two equivalent samples; the first for exploratory factor analysis (EFA) using principal components analysis, and the second for confirmatory factor analysis (CFA). Responsiveness for each subject (change from admission to discharge) was examined using paired t-tests and differences between LHS and RHS for the entire group were examined using non-paired t-tests. EFA showed a strong general factor accounting for >48% of the total variance. A three-factor solution comprising motor, communication and psychosocial subscales, accounting for >69% total variance, provided acceptable fit statistics on CFA (Root Mean Square Error of Approximation was 0.08 and Comparative Fit Index/ Tucker Lewis Index 0.922/0.907). All three subscales showed significant improvement between admission and discharge (p<0.001) with moderate effect sizes (>0.5). Total scores between LHS and RHS were not significantly different. However, LHS showed significantly higher motor scores (Mean 5.7, 95%CI 2.7, 8.6 p<0.001), while LHS had significantly lower cognitive scores, primarily in the communication domain (-6.8 95%CI -7.7, -5.8 p<0.001). To conclude, the UK FIM+FAM has a three-factor structure in stroke, similar to the general neurorehabilitation population. It is responsive to change during in-patient rehabilitation, and distinguishes between LHS and RHS. This tool extends stroke outcome measurement beyond physical disability to include cognitive, communication and psychosocial function.
From Positive Screen to Engagement in Treatment: A Preliminary Study of the Impact of a New Model of Care for Prisoners With Serious Mental Illness
(BioMed Central Ltd., 2016-01-15) Pillai, K; Rouse, P; McKenna, B; Skipworth, J; Cavney, J; Tapsell, R; Simpson, A; Madell, D
Background: The high prevalence of serious mental illness (SMI) in prisons remains a challenge for mental health services. Many prisoners with SMI do not receive care. Screening tools have been developed but better detection has not translated to higher rates of treatment. In New Zealand a Prison Model of Care (PMOC) was developed by forensic mental health and correctional services to address this challenge. The PMOC broadened triggers for referrals to mental health teams. Referrals were triaged by mental health nurses leading to multidisciplinary team assessment within specified timeframes. This pathway for screening, referral and assessment was introduced within existing resources. Method: The PMOC was implemented across four prisons. An AB research design was used to explore the extent to which mentally ill prisoners were referred to and accepted by prison in-reach mental health teams and to determine the proportion of prison population receiving specialist mental health care. Results: The number of prisoners in the study in the year before the PMOC (n = 19,349) was similar to the year after (n = 19,421). 24.6 % of prisoners were screened as per the PMOC in the post period. Referrals increased from 491 to 734 in the post period (Z = -7.23, p < 0.0001). A greater number of triage assessments occurred after the introduction of the PMOC (pre = 458; post = 613, Z = 4.74, p < 0.0001) leading to a significant increase in the numbers accepted onto in-reach caseloads (pre = 338; post = 426, Z = 3.16, p < 0.01). Numbers of triage assessments completed within specified time frames showed no statistically significant difference before or after implementation. The proportion of prison population on in-reach caseloads increased from 5.6 % in the pre period to 7.0 % in the year post implementation while diagnostic patterns did not change, indicating more prisoners with SMI were identified and engaged in treatment. Conclusions: The PMOC led to increased prisoner numbers across screening, referral, treatment and engagement. Gains were achieved without extra resources by consistent processes and improved clarity of professional roles and tasks. The PMOC described a more effective pathway to specialist care for people with SMI entering prison.
Ninety-seven Percent of Trials Investigating Robotic Interventions in Physiotherapy Contained Abstract Spin: A Meta-Research Review
(Wiley, 2026-02-12) Tier, Hilary; Verveer, Jana; Anderson, David B; Quel De Oliveira, Camila; Bartley, Nicci; Mehta, Poonam; Pinto, Rafael Z; Verhagen, Arianne P; McCambridge, Alana B; Stubbs, Peter W
BACKGROUND: Abstract spin involves misrepresenting or misreporting study findings in the abstract of an article. The abstract is the most easily accessible part of the article and may determine if an article is read, purchased or the findings are implemented into practice. Trials using new technologies, such as robotics, may be particularly vulnerable to spin due to the high costs associated with research and development. OBJECTIVE: To identify and assess abstract spin in physiotherapy clinical trials investigating robotic interventions. DESIGN: Meta-research review. METHODS: We searched the Physiotherapy Evidence Database (PEDro) in August 2024 for two-armed clinical trials investigating robotic interventions compared to nonrobotic interventions, in any patient population. Article screening and data extraction were performed by two people independently. Quality assessment was performed using the PEDro scale with PEDro scores ≥ 6 deemed high quality. Abstract spin was assessed by two independent raters using a 7-item checklist. Spin items were scored "present," "not present" or "not applicable." Data were presented as counts and percentages. RESULTS: We included 160 trials, of which 95% were in neurological physiotherapy and 61% of trials were high quality. Almost all trials (97%) contained at least one item of spin. Most often abstracts failed to mention adverse events (90%) or overenthusiastically interpretated non-significant (primary) outcomes (77%). One percent of abstracts clearly omitted negative primary outcomes, and 23% of abstracts recommended treatments without clinically important effects on the primary outcomes. These low spin percentages were due to many trials not reporting any negative finding and trials not providing a clinical recommendation in the abstract. CONCLUSION: Ninety-seven percent of abstracts in trials investigating robotic interventions in physiotherapy contained spin. Academic journals should be conscious of the high prevalence of abstract spin in robotic trials and consider implementing stricter author guidelines or peer-review practices to ensure abstracts truly reflect the study findings.
Communication as a Dynamic Dance: Physiotherapy Clinical Educators’ Conceptualisations of Effective Communication in Final Year Physiotherapy Students in New Zealand
(Physiotherapy New Zealand, 2025-12-12) Wilson, Carolyn; Bright, Felicity; Mooney, Sarah
Effective communication between the physiotherapist and patient is fundamental to physiotherapy practice. In Aotearoa New Zealand, students must demonstrate “effective communication” to become registered, yet it is unclear what constitutes effective communication. Nor is it clear how clinical educators, who assess students’ communication, conceptualise effective communication. This lack of clarity may have implications for how students’ competency is supported and assessed. This research explores how clinical educators conceptualise effective communication in final year physiotherapy students in musculoskeletal clinical settings in Aotearoa New Zealand. Guided by Interpretive Description, data were gathered from physiotherapy clinical educators using two data sources: written reflections from watching a pre-recorded student-patient interaction, and semi-structured interviews. Data were analysed using reflexive thematic analysis. Analysis of data from seven clinical educators suggested effective communication to be a dynamic dance, featuring continuous interplay between the physiotherapy student and patient. This primary theme had three subthemes each highlighting a distinct feature of communication: 1) Adapting communication moves in response to patients; 2) Control of the interaction; and 3) Building rapport with patients. Findings indicate communication skill development is complex and evolves over the course of one’s professional life. Skill development is also embedded within broader understandings of the role and function of the physiotherapist and, accordingly, supporting students to develop communication competencies requires further attention from educators and researchers alike.
Is Your Ethnicity Data Up to Standard?
(Physiotherapy New Zealand, 2025-12-12) McCambridge, Alana B
Feasibility and Acceptability of WeCare Mentoring, an Online Peer Mentoring Programme for Aged Care Support Workers
(Oxford University Press (OUP), 2025-09-10) Czuba, Karol J; Vandal, Alain C; Kayes, NM
Background and Objectives In recognition of the aging population and aged care workforce shortages, calls have been made for responsive and effective strategies for this workforce group. This study aimed to investigate the feasibility, acceptability, and preliminary efficacy of an online mentoring program for aged care support workers serving older adults in New Zealand residential care facilities. Research Design and Methods This mixed-methods study consisted of (1) a nonrandomized single-arm intervention study, with outcome measurement at baseline, 3- and 6-month (Satisfaction with Life Scale, Generic Job Satisfaction, Perceived Stress Scale, and General Self-Efficacy Scale) and (2) a post-intervention qualitative descriptive study exploring perceived acceptability and feasibility aspects of the proposed intervention. Participants met once a month, for 30–60 min. They followed a program manual to work on self-identified goals. Results Thirty-eight support workers enrolled, and 22 of them took part and completed the 6-month program. The recruitment target was reached within the proposed 3-month timeframe. Data collection procedures were considered practical and convenient. Participants (13 mentees and 9 mentors) reported that the program was appealing and relevant, its duration and intensity appropriate, and the online delivery acceptable. Participants proposed refinements to improve their experience further. Exploratory outcomes analysis found all measures trended in the expected direction. Discussion and Implications The WeCare Mentoring Program was found to be a feasible and acceptable intervention. Participants reported several improvements in their well-being and their caregiving-related skills. The next step is to test the intervention’s effectiveness in a definitive controlled trial or quasi-experimental study. If future efficacy trials prove successful, this program can offer a much-needed support to the aged care workforce, and lead to better outcomes for them and the people they care for.
Use of Patient-Reported Outcome Measures in Physiotherapy Clinical Trials in Six Major Physiotherapy Journals Two Decades Apart (2000–2018): A Meta-Research Design
(Informa UK Limited, 2025-07-03) Quel De Oliveira, C; Mehta, P; Nasser, A; Anderson, DB; Kennedy, DS; Pate, JW; Verhagen, AP; Waddell, A; Hildenbrand, C; Wu, L; McCambridge, AB; Stubbs, PW
Aim: Using patient-reported outcomes in research has been incentivised to encourage patient-centred care and ensure patient views are considered. We compared the use of patient-reported outcome measures (PROMs) in trials published in physiotherapy journals in 2000 and 2018, and evaluated whether the number of PROMs used differed between musculoskeletal, neurological, and cardiopulmonary subdisciplines. Design: Meta-research. Methods: Six major physiotherapy journals were searched for trials published in 2000 and 2018. Two independent reviewers extracted data on study characteristics and reporting of PROMs. PROMs were classified according to their outcome domains. Descriptive statistics and inferences were made based on proportions. A 20% difference between 2000 and 2018 was regarded as meaningful. Results: A total of 140 trials were included, 39 were published in 2000 and 101 in 2018. Eighty-four percent (n = 118/140) of trials reported ≥1 PROM, while 89% (n = 125/140) included ≥1 non-PROM. We found no meaningful differences on the average use of PROMs in 2000 and 2018: 74% (29/39) of trials in 2000 versus 88% (89/101) in 2018. PROM use in 2000 and 2018 was 88.5% and 84.4% in musculoskeletal physiotherapy, 57.2% and 86.1% in neurological physiotherapy and 0% and 88% in cardiopulmonary physiotherapy. The most used PROM outcome domains were symptoms and symptom burden (75%) and functional status (65%). Conclusion: Most trials from the six major physiotherapy journals sampled in 2000 and 2018 used PROMs, with no meaningful differences when comparing years. Fewer publications in 2000 than 2018 may account for the differences seen in neurological and cardiopulmonary physiotherapy.
Physiotherapist Factors Associated With the Intention to Deliver Psychologically Informed Physiotherapy in Persistent Low Back Pain: An Online Cross-sectional Vignette Study
(Elsevier BV, 2025-12-04) Earl, Claire; Bean, Debbie; Lewis, Gwyn
Background: Prior qualitative research has revealed several barriers to physiotherapists delivering psychologically informed physiotherapy (PIP). It is not known which factors are most relevant to PIP delivery. Objectives: To determine the proportion of physiotherapists in Aotearoa/New Zealand who intend to deliver PIP to persons with non-specific low back pain (LBP), and to determine factors associated with the intention to deliver PIP. Design: This study used a cross-sectional online vignette case survey design. Setting Aotearoa/New Zealand registered physiotherapists who regularly treat LBP were invited to participate. Methods: Participants (n=224) outlined their intended assessment and treatment plan for two vignettes with persistent LBP. They then completed the Knowledge and Attitudes of Pain Questionnaire (KNAP), components of the Determinants of Implementation Behaviour Questionnaire (DIBQ) and demographic questions. The proportion of physiotherapists intending to deliver PIP was determined by scoring participants’ vignette plans as psychologically informed or non-psychologically informed. Binary regression was used to determine which questionnaire and demographic variables were associated with the intention to deliver PIP. Results: One third of participants intended to deliver PIP in the management of LBP. Binary regression analysis showed that pain knowledge and attitudes were consistently associated with the intention to deliver PIP across vignettes (OR=1.05, 95% CI=1.01 – 1.08; p=.015) (OR=1.05, 95% CI=1.02 – 1.09, p=.005). Beliefs about the consequences of PIP was associated with the intention to deliver PIP in one vignette (OR=2.15, 95% CI=1.12 – 4.11, p=.021). Conclusion: Findings suggest that physiotherapists’ knowledge and attitudes towards pain and their belief that PIP is effective are associated with PIP delivery. Improving pain knowledge and beliefs around PIP may improve the quality of LBP management.
“The fact [is] that there is no easy way”. A Qualitative Study of the Experiences of Aotearoa New Zealand Clinicians With Opioid Tapering for Chronic Non-Cancer Pain
(Dove Medical Press, 2025-11-18) Fu, R; Bean, Debbie; Te Morenga, L; Frei, D; Devan, H
Objective: Opioid tapering is a complex process for both clinicians and patients with chronic pain. This qualitative study explored the experiences of Aotearoa New Zealand clinicians in managing opioids for patients with chronic non-cancer pain. Methods: Purposive and snowball sampling were used to interview nineteen health professionals including general practitioners (n=5), pain medicine specialists (n=5), addiction medicine specialists (n=4), pain fellows (n=3), addiction medicine registrar (n=1) and a pain nurse practitioner (n=1). Data were collected using a face-to-face focus group and fourteen individual interviews conducted via Zoom. The data were analysed using a Reflexive Thematic Analysis approach. Independent parallel coding was done by members of our research team, and the final themes were iteratively developed by mutual consensus. Results: This qualitative study suggests that meaningful opioid tapering requires a patient-centred approach that considers the individual’s unique sociopsychobiomedical context. Clinicians emphasised the importance of building trust, addressing fears, and tailoring tapering regimens to patients’ needs and motivations. While opioid tapering is a complex process for all patients, participants acknowledged unique considerations for supporting people living in rural areas–Māori and Pasifika and their whānau (families and significant others) addressing social determinants of health. There were overwhelming accounts of clinician distress from all participants especially for rural general practitioners due to the lack of support, conflicting practices, limited resourcing, and time constraints. Conclusion: These findings call for a co-ordinated, multidisciplinary approach to opioid tapering that addresses systemic inequities and prioritises patient and clinician well-being.
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.
General Well-being of Intensive Care Nurses: A Prototype Analysis
(Wiley, 2021-08-21) Jarden, RJ; Sandham, M; Siegert, RJ; Koziol-McLain, J
Background: Prototype analyses of well-being have identified central characteristics and prototypicality for New Zealand teachers, lawyers, adolescents, and work well-being of nurses. What has not yet been explored is the broad construct of well-being in intensive care nurses. Aims and objectives: To identify intensive care nurses' conceptions of general well-being and investigate whether their general well-being is prototypically organized. Design: Prototype analysis. Methods: Three linked studies conceptualize well-being in this prototype analysis. In study 1, nurses reported features of well-being. Study 2 investigated the organization of these features. Study 3 sought confirmation of prototypical organization. Results: Sixty-five New Zealand nurses participated. For study 1 (n = 23), the most frequently reported elements of well-being included physical health (n = 26), work-life balance (n = 20), and personal relationships (n = 18). For study 2 (n = 25), the highest rated elements included mental and emotional health, [general] health, work-life balance, and love. Work-life balance, physical health, and personal relationships were in the top five most frequently reported and were rated in the top 12 most central. Overall, ratings of centrality and the number of times reported were positively correlated (r = 0.33, P <.005). For study 3 (n = 17), confirmatory analyses did not reach statistical significance (P =.15). Conclusions: Physical health, work-life balance, and personal relationships are key characteristics of well-being for intensive care nurses. Mental, emotional, and general health and work-life balance were considered most important for well-being. Relevance to clinical practice: Physical health, work-life balance, and personal relationships are key characteristics of well-being for intensive care nurses. These characteristics of the broad construct of well-being are helpful in both defining and identifying conceptual models of well-being that may be used to inform the development and measurement of well-being programmes.
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.

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