Abstracts from the Innovation in Rehabilitation: Applying theory to practice conference, Rotorua, New Zealand, 16 – 17 February 2007

12 Seizing the moment: How, when and why patients and health professionals engage in rehabilitation for urinary incontinence

Jean Hay-Smith & Sarah Dean

Rehabilitation Teaching and Research Unit, Wellington School of Medicine and Health Sciences, University of Otago, New Zealand

Email: [email protected]

Aim. To explore women's and health professionals' (HP) perceptions regarding adherence to conservative management for urinary incontinence (UI).

Study design and methods. In-depth semi-structured audio-taped interviews with six women undergoing conservative management of UI and six HPs who provided rehabilitation. Interviews occurred at the start and end of rehabilitation. Interpretative Phenomenological Analysis (IPA) was used to explore transcribed interview data, starting with a content analysis. Interpretation occurred at two levels Citation[1]: Firstly participants described their experiences; secondly researchers offered their interpretation of what participants said. The robust nature of IPA research is typified by layered analytical procedures combined with several stages of verification: researchers commented on the emerging themes; discussed theme interpretation and extent to which raw data represented themes and interpretations. Refinement of theme descriptions/interpretations occurred several times. Participants could also comment upon their transcripts. Final verification ensured agreement concerning transcript examples used to illustrate themes.

Results. One theme ‘seizing the moment’ describes the how, when and why of engaging with rehabilitation, including the extended timeline of conservative management. A critical or cumulative incident precipitates help seeking, when symptoms of incontinence become unacceptable: ‘but one night it was bad, so wet, I can't have that’; ‘the whole business of being a bit drippy was something I put up with for a long time … . I thought I am not OK with this and I need to do something about this’. When rehabilitation commences, HPs ‘seize the moment because it may be your only chance … … . to get the message out’ and patients say to receive information ‘you've got to be in the right place (mentally) to do this’. How information is delivered is crucial, giving ‘enough time to try and put it into action, enough time to work out how it fits into the bigger picture’ as many participants struggle to find time in busy lives to put themselves first, make time for rehabilitation and accept that ‘it's lifelong’.

Conclusion. Although the time may be right to seek help it appears much harder to find time for rehabilitation; HPs are passionate to provide rehabilitation, attempting to time information delivery to meet individual patient needs, but some may not be ready to receive all the information, or to adjust their lifestyles to incorporate the regular, long-term commitment required.

13 Housing accessibility and multiple sclerosis: A qualitative exploration

Sarah Dean¹, Mondy Jera², Anna Sansom², & Philippa Howden-Chapman²

¹Rehabilitation Teaching and Research Unit, and²Department of Public Health, Wellington School of Medicine and Health Sciences, University of Otago, New Zealand

Email: [email protected]

Aim. To explore individual experiences of access to housing and accessibility to things within a house for people with multiple sclerosis (MS).

Study design and methods. Sixteen participants with MS, between 22 and 76 years of age and living in the Wellington region, were interviewed. Six were male, 13 were homeowners, one rented privately, and two were social housing tenants, there was a range of mobility issues and housing modifications, three were in part-time employment. Audio-taped semi-structured interview lasted approximately one hour. Interviews were transcribed verbatim and analysed utilizing guidelines for Interpretive Phenomenological Analysis Citation[1]. Sub themes from identified commonalities and differences were listed and then clustered to create main themes.

Results. Three main themes emerged: (i) Shifting lifeworlds reflects adjustments made due to MS. Several participants left an unsuitable home, shifting to more accessible houses, others continued living in their homes after minor to major housing modifications. For some, being at home without having to move presented a changing lifeworld because having MS meant a change in the meaning of home due, in part, to increased time spent at home, disruption to activities and needing to compromise; (ii) Negotiating taken-for-granted activities reveals how a house can feel ‘wrong’ when it does not suit one's needs or limits functionality. Participants describe their experience of stairs and the effects of good and bad MS days impacting on ability to perform taken-for-granted activities such as cooking, cleaning, or hanging washing; and (iii) Meaning of an accessible house is a house that allows a person to live in it without having to struggle, a place where one can carry on being ‘normal’ although planning ahead was often mentioned because of the uncertain future of MS.

Conclusion. Experiences of living with MS are individual but common themes can be identified. Within the geographical and social welfare climate of Wellington, it is clear that meeting housing needs at every stage of a person's MS experience may be difficult. Correctly identifying and meeting individual housing needs are crucial to the experience of being at home and having a house that one can function in with regard to physical, emotional and social well-being.

14 Goal-planning for people with acquired brain injury – how clinicians talk about involving families

William Levack¹, Sarah Dean¹, Kath McPherson², & Richard Siegert¹

¹Rehabilitation Teaching and Research Unit, Wellington School of Medicine and Health Sciences, University of Otago, and²Division of Rehabilitation and Occupation Studies, Auckland University of Technology, New Zealand

Email: [email protected]

Background. Family involvement in goal planning is often recommended to ensure rehabilitation focuses on patients within their social and environmental contexts. Little research has been conducted however on how family members should best be involved in goal planning and what the consequences of their involvement are.

Aim. To explore how clinicians talk about involving families in goal planning for people engaged in acquired brain injury (ABI) rehabilitation.

Method. Grounded theory was used to analyse data from in-depth interviews conducted with nine clinicians from different professional and employment backgrounds.

Results. Clinicians identified both benefits and challenges associated with involving families in goal planning. Family members were described as useful resources in situations where communicative and cognitive impairments limited involvement of patients themselves. Involvement in goal planning was also positively associated with educating families about ABI and rehabilitation – encouraging families to maintain hope while confronting potentially ‘unrealistic’ expectations early on. In this way, goal planning was used to build a working relationship with family members, redirecting them towards supporting activities that were considered by the clinicians to be of most clinical benefit to patients. However, at times clinicians described situations where family involvement in goal planning appeared less straightforward. Family members were sometimes described as having their own agendas for rehabilitation, frequently influenced by their own emotional responses to the situation. Where these agendas differed from those of clinicians or those attributed to patients, they were perceived as potential barriers to developing working relationships with individual patients, and at times clinicians described implementing strategies to constrain further family involvement.

Conclusion. Clinicians focus rehabilitation around perceived needs of individual patients rather than those of family units. These findings are discussed from within the context of health funding structures in New Zealand, which emphasize service delivery to individual clients/claimants rather than to family units.

15 Goal-setting in rehabilitation: A feasibility study of two new approaches in traumatic brain injury

Nicola Kayes¹, K. M. McPherson¹, R. Siegert², H. McNaughton³, & M. Harwood³

¹Physical Rehabilitation Research Centre, Auckland University of Technology, ²Rehabilitation Teaching and Research Unit, Wellington School of Medicine and Health Science, University of Otago, and³Medical Research Institute of New Zealand

Email: [email protected]

Background. Goal setting is widely considered ‘best practice’ within neuro-rehabilitation, however there is little evidence for its effectiveness and no clear foundation or theoretical basis for clinicians to use when developing goal-setting programmes in practice. Two new approaches to goal setting have recently been developed, based on Self-Regulation Theory: Goal Management Training (GMT) and Identity Oriented Goal Training (IGT).

Aims. This feasibility study aimed to explore the utility and appropriateness of these novel interventions in people with traumatic brain injury (TBI). The main objectives were to: Refine the interventions; evaluate the acceptability of the interventions; and pilot the utility of measures for a definitive trial.

Methods. People with moderate-severe TBI were recruited through neuro-rehabilitation providers and allocated to a six week intervention of GMT, IGT or Routine Care using block randomization. A set of standardized questionnaires were completed with an interviewer who was blind to intervention allocation. Follow-up interviews with participants and focus groups with clinicians were conducted.

Results. Given the focus on utility of the intervention, data are non-numeric. A total of 31 participants have been recruited to the study to date from two rehabilitation settings: Nine allocated to GMT, 10 to IGT, 12 to Routine Care. Some key findings include: (i) Participant feedback: Participants enjoyed taking part and felt a sense of achievement in working towards meaningful goals. Some measures were difficult to complete; (ii) Clinician feedback: Both interventions were acceptable to clinicians, but IGT was particularly useful in helping participants identify meaningful goals, GMT provided a structured process for engaging clients in the attainment of identified goals, Contractual obligations conflicted with intervention progress, and Interventions required a ‘mind shift’; and (iii) Researcher observation: Goal attainment scaling was an intervention in its own right, Clinicians had difficulty when clients identified goals that were perceived to be outside their scope of practice.

Conclusions. This feasibility study demonstrated that these novel interventions were useful in engaging people with TBI in the goal-setting process. However, each had their own strengths suggesting that a combination of these two strategies may be the way forward. Practical issues identified can be overcome with some simple methodological changes to the full trial.

Stream Three: Meanings, models and measures

18 Quality of life and quality of care for people who experience disability

K. M. McPherson¹, N. Kayes¹, K. Diesfeld¹, P. Patston², R. Billington¹, & W. J. Taylor³

¹Auckland University of Technology, ²Diversity Works, Auckland, and³University of Otago, New Zealand

Email: [email protected]

Background. Enhanced quality of life (QoL) is increasingly considered an important outcome. However, many measures have been developed without considering the perspective of people actually experiencing disability. A 17-country consortium is currently working together to ensure one measure of QoL, the WHOQOL, includes explicit consideration of factors that people experiencing disability consider important.

Aim. To determine what New Zealand people experiencing disability consider the most important aspects of quality of life and quality of care.

Methods. A qualitative approach developed by the World Health Organization in its development of the WHOQOL measure has been adopted. Focus groups were undertaken addressing the above aims. Each centre is conducting a minimum of five focus groups – one for each of the following categories: An intellectual impairment group, a mixed physical impairment group, a specific physical impairment group (either Parkinson's disease or hearing/sensory impairments), a professional group (including both health and social care professionals), and a relatives and carers group. We also intend to carry out additional focus groups with people who have other impairments and from cultural groups including Maori and Pacific people with disability. Focus groups were tape recorded and transcribed, with additional information recorded by a second facilitator. Content analysis has been carried out to determine important themes.

Results. Five groups (total sample n = 23) have been carried out with individual interviews carried out with two Maori participants as per their preference. Others sessions are planned for completion 2007 with people sensory impairment. Key themes identified so far are: (i) QoL: Friendship, family, a sense of personal achievement, choosing what to do, communicating and being understood; and (ii) Quality of care: Being listened to, being seen as more than ‘disabled’, one's expertise being considered and valued.

Conclusion. Whilst data collection is ongoing and thus new themes may be determined, it is already clear that the WHOQOL and other measures of QoL fail to adequately consider the factors of importance for New Zealander experiencing disability. As recognized by the WHOQOL group, a new module addressing issues of importance to people with impairment seems warranted and this data will contribute to the development of such a measure.

19 Enabling people with chronic conditions to be healthy

Kieren Faull

QE Health, PO Box 1342, Rotorua, New Zealand

Email: [email protected]

Objectives. To develop a holistic, rehabilitative, interdisciplinary, client-centred theory of health change for those with chronic physical impairments and to construct and test the validity of a measure designed to assess client change phase position.

Method. Both qualitative and quantitative methods were employed across six studies to investigate and assess the process of health attainment for the 716 participants with chronic musculoskeletal conditions. The research programme involved: (i) Asking what health is and how it is achieved from the consumers' perspective; (ii) developing a theory of the process of healthy change; (iii) constructing and validating a quantitative measure of health (the QE Health Scale), assessing this theory; and (iv) testing the clinical validity of the QE Health Scale (QEHS).

Results. The research found that a healthy resilient identity required awareness of the transient and unpredictable nature of the more objective physical, social and cognitive aspects of self while acknowledging the constancy and continuity of the intrinsic ‘I’ or spiritual self. The Health Change Process theory explains the health process for those with chronic conditions. It predicts the characteristics of health status and interventional approach at each change phase. The QEHS was developed from this theory and identifies present health status with respect to Health Change Process Theory phases and also enhances therapeutic interaction.

Conclusions. The Health Change Process Theory and associated QEHS have been found to enhance therapeutic assessment, treatment and professional development within musculoskeletal healthcare. It remains to be seen whether they are applicable in different healthcare populations.

20 The Physical Activity and Disability Survey (PADS): Reliability, validity and utility in people with multiple sclerosis

N. M. Kayes¹, K. M. McPherson¹, D. Taylor¹, P. J. Schluter², & G. S. Kolt³

¹Physical Rehabilitation Research Centre, ²Faculty of Health and Environmental Sciences, and³Centre for Physical Activity and Nutrition Research, Auckland University of Technology, New Zealand

Email: [email protected]

Background. People with multiple sclerosis (MS) are reported to engage in particularly low levels of physical activity resulting in physical deconditioning and onset of secondary conditions. A clearer understanding of the correlates of physical activity in this group is paramount in the development of effective interventions. However, research in this area is limited by the lack of valid and reliable measures available for use in people with disability. The Physical Activity Disability Survey (PADS) was specifically developed to assess physical activity in people with disabilities.

Aims. This study aims to: (i) Assess the utility of the PADS in people with MS, and to evaluate its test-retest reliability and construct validity; and (II) To use the results of aim 1 to inform the development of a revised measure, PADS-R and pilot this revised measure in people with MS.

Methods. Participants were recruited from the MS Society of Auckland. A total sample of 30 participants completed the PADS twice with seven days between repeated measures, during which time they wore an accelerometer. Semi-structured interview questions were used to explore the utility of the PADS. Results informed revisions to the PADS and a further 30 society members were invited to pilot the PADS-R using the same methodology.

Results. While standardized PADS scores between timepoints had a high intraclass coefficient of 0.92 (95% CI: 0.88, 0.98), Bland-Altman 95% limits of agreement (−17.4, 17.4) were modest. Compared to accelerometer activity counts, standardized PADS scores had wide 95% prediction intervals. Participants reported the PADS was easy to understand and complete, enabling them to give an accurate picture of their physical activity. However, some had difficulty thinking of time spent doing activities and identified some missing items. Psychometric properties and utility of the revised measure, PADS-R, will be reported.

Conclusions. The PADS appears to be a potentially appropriate measure of activity for people with MS, particularly in terms of the wide range of activities it covers and its ability to detect varying levels of physical activity. We expect the PADS-R will display improved psychometric properties further strengthening this as a robust measure of physical activity in people with MS.

21 Using Rasch analysis to compare the psychometric properties of the Short Form 36 Physical Function score and the Health Assessment Questionnaire Disability Index in people with psoriatic arthritis and rheumatoid arthritis

William J. Taylor¹ & Kathryn M. McPherson²

¹Rehabilitation Teaching and Research Unit, Wellington School of Medicine & Health Sciences, University of Otago, and²Division of Rehabilitation and Occupation Studies, Auckland University of Technology, New Zealand

Email: [email protected]

Background. Item-response theory is increasingly used in the development of robust measurement tools. The extent to which the Health Assessment Questionnaire Disability Index (HAQ-DI) and Short Form 36 Physical Functioning subscore (SF-36 PF) fit a Rasch model in psoriatic arthritis (PsA) is uncertain.

Objective. To compare the psychometric properties of the HAQ-DI and SF-36 PF in PsA and rheumatoid arthritis (RA) using Rasch analysis.

Study design and methods. Patients with RA (n = 142) and PsA (n = 134) were identified from a disease register based at a regional rheumatology service that serves a population of around 400,000 people. Responses to the HAQ-DI and SF-36 PF were analysed for item fit, differential item functioning (DIF), scale length (item separation), floor effects and item difficulty by fitting the data to a Rasch model. The extent to which each instrument measures the same concept (disability) was also assessed in the PsA cohort using the Rasch model.

Results. Item separation was much better for SF-36 PF than HAQ-DI in PsA (9.09 logits compared to 2.06). There was evidence of marked DIF for the HAQ-DI items of Activities, Grip and Rising and relatively minor DIF for 4 items of the SF-36 PF. The distribution of SF-36 PF was better than HAQ-DI in PsA, with floor effects in 3.4% compared to 30.1%. Common person equating showed that the two instruments measure the same construct in PsA.

Conclusion. The SF-36 PF has significant psychometric advantages over the HAQ-DI in PsA.

22 The role of clinical outcome measures in the treatment of low back pain – the result of two focus groups

Janet Copeland¹, William Taylor², & Sarah Dean²

¹108 Khandallah Road, Wellington 6035, and²Rehabilitation Teaching and Research Unit, Wellington School of Medicine & Health Sciences, University of Otago, New Zealand

Email: [email protected]

Aim. Two focus groups were used to explore the level of use and understanding of clinical outcome measures (COM) by New Zealand physiotherapists in their treatment of patients with low back pain.

Study design and methods. Focus groups were chosen as they are a useful tool for obtaining information about a subject prior to the development of a questionnaire survey to be used in the second phase of the study. Two focus groups were convened using a purposeful sampling technique, one in the physiotherapy outpatients department of a public hospital (n = 6) and the other in a private practice (n = 6). The meetings were audio-taped and the data transcribed then analysed with an inductive approach to allow patterns and categories to emerge.

Results. The level of knowledge about COM was lower than anticipated and none of the participants were using them. The main outcomes measured were observed or reported changes in functional activities and the achievement of individual goals. Pain was frequently discussed with the patient but was not recorded in any standard format. Lack of knowledge and time were the main barriers to the use of COM. The role of the Accident Compensation Corporation as a purchaser of physiotherapy services featured in the discussion, especially for the private practitioners, and this related directly to insufficient time due to low levels of reimbursement. Both groups acknowledged that lack of knowledge and low level of use of COM was a possible threat to the profession.

Conclusion. The focus groups resulted in major changes to the draft questionnaire for the subsequent survey. Identified barriers to the routine use of COM were included in a 24-item Likert scale question so they could be further evaluated and two questions relating to the methods currently used to record outcomes were included, ensuring the survey had relevance to its New Zealand setting.

23 Validity of the ‘Impact on Participation and Autonomy’ questionnaire – a comparison between The Netherlands and the UK

Paula Kersten¹, Mieke Cardol², Steve George³, Christopher Ward⁴, Andrew Sibley⁵, & Barney White³

¹School of Health Professions and Rehabilitation Sciences, University of Southampton, UK, ²NIVEL (Netherlands Institute for Health Services Research), Utrecht, The Netherlands & Department of Rehabilitation, Amsterdam Medical Centre, Amsterdam, The Netherlands, ³Public Health Sciences, School of Medicine, University of Southampton, ⁴Rehabilitation Research Unit, University of Nottingham, UK, and⁵School of Nursing & Midwifery, University of Southampton, UK

Email: [email protected]

Objective. Rehabilitation is concerned with alleviation of the long-term consequences of disease. Assessment should therefore address long-term outcomes in terms of participation. The Impact on Participation and Autonomy Questionnaire (IPA) is a relatively new generic outcome measure that evaluates the perceived personal impact of chronic disability on participation and autonomy. The original Dutch IPA has 31 items, measuring participation and autonomy. The IPA has been shown to load onto five factors, i.e., ‘autonomy indoors’; ‘family role’; ‘autonomy outdoors’; ‘social life and relationships’; and ‘work and education’. This analysis aimed to evaluate the cross-cultural validity of the five subscales of the Impact on Participation and Autonomy (IPA) measure and the full 31-item scale.

Study design and methods. Data from two validation studies (Dutch and English) were pooled (n = 106). Participants (aged 18 – 75), known to rehabilitation services or GP practices, had conditions ranging from minor ailments to significant disability. Validity of the five subscales and the total scale was examined using Rasch analysis (Partial Credit Model); p-values smaller than 0.01 were employed to allow for multiple testing.

Results. A number of items in all the subscales except ‘outdoor autonomy’ needed rescoring. One ‘indoor autonomy’ item showed uniform DIF by country and was split by country. One ‘work and education’ item displayed uniform and non-uniform DIF by gender. All the subscales fitted the Rasch model and were invariant across country. A 30-item IPA also fitted the Rasch model.

Conclusion. The IPA subscales and a 30-item scale are invariant across the two cultures and gender. The IPA can be used validly to assess participation and autonomy in these populations. Further analyses are required to examine whether the IPA is invariant across differing.

Day Two, Stream One: Politics, policy and practice

Symposium: Developing person-centred rehabilitation: Where is the person?

Stream One: Politics, policy and practice

30 Benchmarking outcomes in rehabilitation – the Australasian Rehabilitation Outcomes Centre story

Frances Simmonds

Centre for Health Service Development, University of Wollongong, Australia

Email: [email protected]

Background. The Australasian Rehabilitation Outcomes Centre (AROC) began as a joint initiative of the Australian rehabilitation sector (providers, funders, regulators and consumers). It commenced operation on 1 July 2002 with the prime objective being the collection of a standardized dataset against each and every rehabilitation episode of care, initially within Australia, and then expanding to include New Zealand and other Australasian countries. The Australasian Faculty of Rehabilitation Medicine (AFRM) is the auspice body and the data custodian. The Centre for Health Service Development (CHSD) at the University of Wollongong is the data manager and responsible for AROC's day-to-day operations. AROC provides twice-yearly reports to member facilities analysing their data and comparing them to the appropriate benchmark group data and the national data. There are approximately 140 rehabilitation units in Australia (public and private). Of these 130 currently belong to AROC and submit data, which over 2006 described some 45,000 rehabilitation episodes. In total the AROC database now holds data on more than 275,000 episodes of rehabilitation.

Findings. This presentation will describe the 2005 data by AROC impairment group, and also by sector. It will then discuss the rehabilitation outcomes achieved during 2005 and, importantly, show the positive changes that have been achieved by the industry between 2000 and 2005, which overall present a good news story. Length of stay is (mostly) decreasing; functional gain achieved during a programme is (mostly) increasing, and its being achieved more efficiently; and a greater percentage of patients are being discharged back to the community. Interestingly, the average age of patients has not changed substantially over the 5 years.

Conclusion. Collection of a standardized data set has enabled the provision of a national benchmarking system, which in turn has led to an improved understanding of factors that influence rehabilitation outcomes and costs, and therefore performance of the sector.

Stream Two: Novel rehabilitation strategies/physical rehabilitation

35 The impact of a six-week strengthening program of the energy generator muscles on clinical and gait parameters of chronic hemiparetic individuals

Marie-Hélène Milot, Sylvie Nadeau, Denis Gravel, & Daniel Bourbonnais

Institut de réadaptation de Montréal, recherche 4^eétage, 6300 Darlington, Montréal, Québec, Canada, H3S 2J4. [École de réadaptation, Université de Montréal et Centre de recherche interdisciplinaire en réadaptation (CRIR), Institut de réadaptation de Montréal, Canada]

Email: [email protected]

Objective. To evaluate the impact of an isokinetic strengthening program targeting the affected muscle groups involved in the energy generation of walking, on clinical and gait performances.

Study design and methods. In this single-blinded randomized control trial, the experimental group, that is 15 chronic hemiparetic individuals, concentrically trained the affected plantar flexors, hip flexors and extensors, in a setting similar to the one found during the muscles maximal concentric effort in gait, while the control group (n = 15) trained the affected upper-limb muscles. Both protocols were conducted three times/week during a six-week period. Prior to and after the training, each participant underwent a maximal concentric strength testing of the ankle and hip muscles, a biomechanical gait analysis and a clinical evaluation (e.g., spasticity, 5 m and 6 min walk tests) to determine the effect of the strengthening protocol on muscle strength, gait and clinical performances.

Results. After training, the experimental group showed a significant improvement in strength for the plantar flexors (51%; p = 0.002), which was similar to the one noted in the control group (40%; between group p = 0.286). Regardless of the group, a trend toward strength gain was also observed for the hip muscles (p > 0.055). Gait speed and cadence increased (p < 0.033) similarly for both groups, along with some significant changes in the hip energy generation parameters. For the experimental group, no adverse effect on spasticity was observed and the 5 m and the 6 min walk tests significantly improved (p < 0.005). This improvement was comparable to the one observed in the control group (between group p > 0.213).

Conclusion. Strengthening the affected muscles of chronic hemiparetic individuals had a positive impact on clinical and gait parameters. However, because training either the affected lower or upper extremity resulted in similar improvement, future research should now determine the mechanism by which hemiparetic individuals use their gain of strength to improve gait performance and thus help to better understand the impact of muscle strengthening on function.

36 Clinical performance of walking and ‘real world’ walking in people with stroke: Are they the same?

Denise Taylor, C. Stretton, S. Mudge, & N. Garrett

Physical Rehabilitation Research Centre, Faculty of Health and Environmental Sciences, AUT University, Private Bag 92006, Auckland, New Zealand

Email: [email protected]

Aim. To compare the extent to which walking speed measured in a clinic reflects walking speed measured in community settings in people with chronic stroke. There is limited information relating to how individuals with stroke walk in the community yet we know that achieving community ambulation has significant implications for social participation.

Study design and methods. Twenty-eight people with chronic stroke who regularly accessed the community were divided into those who walked at velocities of 0.8 m/s or faster (Group A) and those who walked slower than 0.8 m/s (Group B). This division was introduced as 0.8 m/s is frequently used as a cut-off score for defining a person as able to walk in the community. Participants completed gait velocity measures in a clinic and in five settings within a community based shopping mall. The community circuit was 300 m and covered a variety of environmental conditions. Participants could rest as they needed during the community based circuit.

Results. Spearman rank correlation coefficient indicated that there was a strong correlation between total time taken to complete the community based circuit (including rests) and the clinic based velocity measures (r = −0.88, p < 0.0001). A linear mixed model with repeated measures analysis revealed significant interaction between community measures for the groups (F4, 26 = 4.49, p = 0.0068) and significant differences across community conditions (F, 26 = 7.12, p = 0.0005).

Conclusion. Clinic-based measures of walking velocity can predict community based walking velocity in those people who score 0.8 m/s or faster. However, for those who score less than 0.8 m/s in the clinic test community velocities may be overestimated particularly in situation where there is increased attentional demands and changing terrain. This study indicates the need to validate clinic based measures and assumptions in real world settings.

37 Prism adaptation treatment in unilateral neglect: The effect on self-care and mobility

Ailie Turton¹, Kelly O'Leary², Judith Gabb², & Iain Gilchrist¹

¹Department of Experimental Psychology, University of Bristol, and²Occupational Therapy Department, Bristol General Hospital, United Bristol Healthcare Trust, Bristol, UK

Email: [email protected]

Aims. Neglect, or lack of attention to one side, is a common consequence of stroke that greatly hinders rehabilitation. A new treatment using prism adaptation has shown promise for helping stroke patients to attend to the affected side of space. Previous evaluations of prism adaptation treatment have been based on single case or very small group studies and used neuropsychological tests of spatial attention as outcome measures. The effect of prism adaptation on patients' performance in everyday living tasks has not been addressed. The purposes of this study was to test the feasibility of prism adaptation treatment in a UK hospital-based rehabilitation service and determine magnitude of any treatment effects on activities of daily living and mobility.

Study design and methods. A pilot randomized controlled trial design experiment was used. A total of 34 stroke patients with unilateral spatial neglect were randomized using a minimization procedure into either prism adaptation treatment or a procedure that was similar but was sham treatment. The treatments were given in 10 sessions over a course of two weeks. Outcome measures were the Bergego Behavioural Assessment (a unidimensional scale of self-care tasks) and the Behavioural Inattention Test (BIT). Measures were performed by a ‘blind’ assessor at baseline and three days after the end of treatment.

Results. Mean compliance was 99% for the experimental and 97% control group. The few missed sessions were mostly due to illness. There was no difference between groups in change scores for the Bergego assessment: Mean (SD) experimental −3.5 (3.1), control −3.3 (2.5). Change scores for BIT assessments, were 14.8 (18.7) and 9.7 (15.9), respectively.

Conclusion. The treatment was acceptable to patients but differences in the outcomes between the two treatment groups were negligible. The sample showed large variation and so further study of the effects of treatment on different subgroups of neglect patients is necessary before deciding whether or not prism adaptation is a valuable treatment in a clinical setting. (This study was funded by The Stroke Association, UK).

Stream Three: Psychosocial well-being

38 Stability of self-efficacy scores in a general population survey

W. J. Taylor, N. Vipond, R. Siegert, & S. Dean

Rehabilitation Teaching and Research Unit, Wellington School of Medicine & Health Sciences, University of Otago, New Zealand

Email: [email protected]

Objective. (a) To estimate general population normative values for the General Self-efficacy Scale (GSE) and the Health Self-efficacy Scale (HSE); and (b) to determine the stability of self-efficacy scores over a period of 18 months.

Study design and methods. Postal survey: 540 subjects were randomly selected from the electoral registers of the lower North Island and mailed a survey. Respondents who agreed to a second survey were re-surveyed 18 months later. Among the questions was the General Self-efficacy scale (score range 0 – 30) and Health Self-efficacy scale (score range 0 – 24).

Results. There were 289 responses; 69 subjects were ineligible (deceased or wrong address), giving an effective response rate of 61%. Of the 289 baseline respondents, 139 (48%) responded to a second survey at 18 months. The mean (SD) age-sex values for the GSE and HSE at baseline are shown in Table I. The relationship between baseline scores and scores after 18 months is presented in Figure 1 using a Bland & Altman plot (solid line indicates the average difference, dotted lines indicate the limits of agreement).

Figure 1. Relationship between baseline and 18 month scores of GSE and HSE.

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Table I.  Age-sex scores of GSE and HSE in the general population

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Conclusion. There are no significant age-sex differences in self-efficacy scores in the general population. GSE scores of less than 17 and HSE scores of less than 8 represent the 5th percentile. On average, GSE and HSE scores remain stable over time, especially at either end of the scale. These data suggest that self-efficacy in the general community is an enduring trait. However, the evidence of variability in difference scores does suggest that, in some people, self-efficacy may be amenable to clinical intervention that aims to change self-efficacy.

41 Improving the rehabilitative management of client sexual health concerns after neurologic disability: Evaluation of a staff sexuality training program in New Zealand

Grahame Simpson & Samir Anwar

Rehab Plus, 54 Carrington Road, PO Box 44 037, Pt Chevalier, Auckland, New Zealand

Email: [email protected]

Aim. A survey of 23 staff and 180 patients from a New Zealand rehabilitation centre concluded that sexuality issues were not adequately addressed during the rehabilitation process. In response, the current project aimed to evaluate the impact of a staff training workshop in improving the rehabilitative management of patient sexual health concerns after neurologic disability.

Study design and methods. A prospective controlled pre- and post-test evaluation design with a six-month follow-up. A total of 74 staff who attended a two-day workshop was administered three purpose-designed measures, as well as the Sex Attitude Scale. A control group of 25 staff who did not attend the training also completed the measures. The purpose-designed measures included an objective knowledge test, a self-rating inventory of skills and clinical activity, and a single-item measure evaluating the degree of staff comfort in addressing patient sexual health concerns.

Results. Workshop participants showed significant increases in their knowledge, skills and comfort comparing pre- to post-workshop scores. A number of these gains were maintained at the six-month follow-up. There was an associated increase in the reported level of staff activity in addressing patient sexual health concerns in the six months to follow-up, in comparison to the six months preceding the workshop. By contrast, the control group had similar pre-workshop scores to the workshop participants, but recorded no increase on the measures, or in their level of reported activity, at the six-month follow-up. Importantly, all 99 participants had generally positive attitudes towards the issue of sexuality, with scores on the Sexual Attitude Scale similar to known groups with positive attitudes in the United States.

Conclusions. The programme showed initial promise as an effective intervention for upgrading the capacity of staff to address patient sexual health concerns in rehabilitation settings. The findings from the attitude scale suggest that future staff sex education can move beyond having to major on attitude change, and instead, focus attention on increasing staff knowledge and skills.

42 Exploring the perceptions of patients and health professionals of asthma education and rehabilitation management in New Zealand

Vanessa Young¹, Sarah G. Dean¹, C. Raina Elley², & Anne Bruton³

¹Rehabilitation Teaching and Research Unit, Wellington School of Medicine and Health Sciences, University of Otago, ²Department of Primary Care, Wellington School of Medicine and Health Sciences, New Zealand, and³School of Health Professions and Rehabilitation Sciences, University of Southampton, UK

Email: [email protected]

Aim. This study explores patient and health professional perceptions of asthma education and rehabilitation management in a lower socio-economic New Zealand primary healthcare setting.

Study design and methods. Perceptions were explored using individual semi-structured audio-taped interviews with five patients with asthma and five healthcare professionals who provided asthma education from a primary healthcare clinic in Wellington. A qualitative approach known as Interpretative Phenomenological Analysis Citation[1] was used to explore transcribed data; incorporating a content analysis and a re-iterative interpretative analysis based upon discussions between two researchers and then verified by a third researcher. Perceptions of Maori patients were emphasized, due to the disparity of asthma health outcomes in New Zealand.

Results. ‘Priority’, ‘beliefs’ and ‘frustration’ were prominent emergent themes. Patients are concerned with issues they confront in their day-to-day lives, and do not prioritize health professionals' emphasis on health promotion. Health professionals face time constraints, which affect their ability to deal with multiple social and health problems and their rapport with, and ability to provide education for, a patient. Patients' beliefs of asthma rehabilitation differ from those of health professionals. Patients often accept that their asthma will be uncontrolled and that their symptoms must be tolerated. Reliance on health professionals during acute exacerbations is the focus, rather than longer-term self-management and prevention that are the focus of health professionals. Health professionals expressed frustration about the lack of patient adherence to preventative self-management strategies whereas patients were frustrated with the inconvenience of asthma management regimens.

Conclusion. The findings highlight the complexity of the patient-health professional relationship and identify factors that lead to dissonance between both parties in terms of adherence to rehabilitation, particularly the mismatch between the medical model of health education that places the individual's medical condition at the centre, and patients' realities that are set within their social, economic and cultural context and often ‘others-orientated’. The participants in this study prioritized issues of basic survival above chronic disease management.

43 Programme evaluation and the RTRC Chronic Fatigue Programme

Rob Weller

Royal Talbot Rehabilitation Centre, Yarra Boulevarde, KEW, Australia 3101

Email: [email protected]

Introduction. Chronic Fatigue Syndrome (CFS) is a disabling condition affecting up to 3% of the population; its aetiology is unknown and there is no specific treatment. Increasing numbers of referrals resulted in the establishment in late 2004 of a dedicated therapy programme at the Royal Talbot Rehabilitation Centre (RTRC) in Melbourne for patients with the condition, and the programme had evolved to the point where decisions were required on ongoing resourcing.

Methods. A literature review of programme evaluation strategies was carried out, and the Cost-consequence methodology was selected as the most appropriate approach to inform decision-making. Cost-consequence methodology tabulates all known programme outcomes and both direct and indirect costs so that decision-makers can select the information most relevant to their inquiries. The methodology draws no conclusions about the value or otherwise of the target programme – rather, it presents information in a way that allows decision-makers to draw their own conclusions based on their criteria of valuation and their particular perspective.

Results. The evaluation process highlighted deficiencies in data collection that would have been best addressed at the programme's inception, as well as difficulties with patient follow-up. It demonstrated effectiveness of the therapy programme across some physical and functional domains, and showed that revenue exceeded direct costs; however, it failed to convince the Health Service's Executive body to allocate additional resources to the programme.

Conclusions. Programme evaluation mechanisms should be developed and implemented at the commissioning stage of a new programme. Cost-consequence analysis is a useful way to present programme evaluation provided that there is sufficient expertise within the organization to assist with interpretation of the findings. Although there are signs that the RTRC programme is effective for selected patients, data available is not sufficient for firm conclusions, and patient numbers are small. The RTRC's therapy team needs to prioritize the establishment of a standard data set, based preferably on reported overseas RCTs in the absence of anything local. The data set should incorporate standard patient satisfaction measures and longer-term follow-up.

44 Predictors of good and poor 6-month outcomes in patients with ischaemic stroke: A population-based study

V. Feigin, V. Parag, & K. Kraywinkel

For the Auckland Regional Community Stroke Study Group, Clinical Trials Research Unit, The University of Auckland, Private Bag 92019, Auckland, New Zealand

Email: [email protected]

Background. Early prediction of post-stroke outcomes is important for adequate long-term healthcare planning, and for informing patients and their families. However, good quality population-based data on predictors of outcomes in ischaemic stroke patients are scarce, and many existing stroke outcome prediction models are difficult to use in everyday practice.

Objectives. The main objective of this study was to develop easy-to-use predicting models of good/poor outcomes and institualization in ischaemic stroke patients at 6 months after stroke onset.

Design and methods. This study was based on first-ever-in-a-lifetime ischaemic stroke (IS) patients (n = 836; males 50%) registered for one calendar year (March 2002 to March 2003) in Auckland during the Auckland Regional Community Stroke (ARCOS) population-based study. Only patients with CT/MRI head scanning or autopsy verified IS (91% of all patients) independent in ADL at baseline were included in the analysis. Dependency in ADL at 6 month post-stroke was defined by ‘two simple questions’ questionnaire. Poor outcome at 6 months post-stroke was defined as dependency or death. Other than home residence at 6 month post-stroke was regarded as institualization. A range of medico-social variables were considered as potential predictors of the outcomes. Conditional logistic regression analysis with adjustment for all possible confounders was employed for the modelling. Three predicting models were fitted: dependency versus independency, poor outcome (dependency or death) vs. independency, and institualization vs. non-institualization. NZSEI was tested in the sensitivity analysis.

Results. Independent predictors of dependency at 6 months post-stroke were: Advancing age, being Maori, Pacific or Asian ethnicity, being female, experiencing GCS < 15, and having a limb weakness at the presentation. These variables plus diabetes mellitus and dysarthria/dysphasia were also independent predictors of poor outcomes, while the predictors of institualization were only advanced age, experiencing GCS < 15, living alone, and having a limb weakness at the presentation.

Conclusions. Age, female gender, Maori/Pacific/Asian ethnicity, stroke severity and symptoms at presentation are important predictors of dependency and poor outcomes in ischaemic stroke patients at 6 month post-stroke, while ethnicity is not a predictor of institualization. They are easily identifiable on the hospital admission and can be used for long-term healthcare planning and informing stroke patients and their families.

Poster presentations

51 Psychological well-being of stroke survivors in Fiji

Jagdish Maharaj

Lourdes Hospital and Community Services, NSW 2830, Australia

Email: [email protected]

Aim. This study investigated the psychological well-being of community-dwelling stroke survivors and compared the findings with matched controls.

Method. The study utilized the criteria and methods adopted from the Ryff Measure of Psychological Well-Being to measure the six core theoretical dimensions of well-being. The six 14-item scales of psychological well-being is constructed to measure the dimensions of autonomy, environmental mastery, personal growth, positive relations with others, purpose in life, and self-acceptance.

Results. The results of psychological well-being in the six key domains are presented. In the domain of autonomy stroke survivors scores 54.0 (28 – 75), whereas controls had 59.2 (47 – 84); for environmental mastery stroke survivors scored 54.0 (28 – 72) whereas controls had 64.6 (50 – 82); for personal growth stroke survivors scores 58.4 (34 – 78), whereas controls had 67.4 (48 – 82); for positive relations with others stroke survivors scores 60.3 (25 – 83), whereas controls had 70.6 (54 – 84); for purpose in life stroke survivors scored 53.0 (32 – 73), whereas controls had 64.5 (48 – 84); for self-acceptance stroke survivors scored 49.9 (22 – 78), whereas controls had 60.3 (43 – 80).

Conclusion. This study examined the six distinct dimensions of well-being (autonomy, environmental mastery, personal growth, positive relations with others, purpose in life, and self-acceptance) in community-dwelling stroke survivors and compared the findings with matched controls. The results of the study demonstrate that stroke survivors living in the community are consistently disadvantaged in all the six core dimensions of psychological well-being.

52 A randomized controlled trial of Attention Process Training Post-stroke: A rationale and design of the START study, 2006 – 2009

Suzanne Barker-Collo, V. Feigin, H. Senior, M. Dudley, & X. Chen

For the START study team, Department of Psychology and Clinical Trials Unit, The University of Auckland, Auckland, New Zealand

Email: [email protected]

Background. Impairments in attention contribute to poor outcomes, and attention is the basis for other areas of cognition (e.g., memory and communication). Attention Process Training (APT) has been shown using small samples to be effective in reducing attention deficits in persons with traumatic brain injury. There is no robust evidence for the effectiveness of APT in stroke patients.

Aims. To determine the effectiveness of APT in improving attention and health-related quality of life (HRQoL) in stroke survivors at 6 months after the stroke. Secondary aims are to determine the impact of APT on: (a) Disability and handicap at 6-month post stroke; and (b) other neuropsychological functions in stroke survivors at 6-months post stroke.

Design. Prospective, open, randomized, clinical trial. Participants will be randomly allocated to receive either APT or standard care. Those in the APT group will receive 30 h of individual APT training. The remainder will receive standard care. APT materials consist of a group of hierarchically organized tasks that exercise different components of attention, including sustained, selective, alternating, and divided attention. The intervention will be administered by a neuropsychologist.

Participants. Participants will include survivors of stroke admitted to acute rehabilitation units of Auckland hospitals across an 18-month period, identified via neuropsychological assessment as having an attention deficit. Exclusion criteria: (i) Inability to give informed consent; (ii) severe cognitive deficits precluding participation in APT; (iii) medically unstable; (iv) not fluent in English, as standardized administration of tests requires English fluency; or (v) another condition that could impact results.

Main outcome measures. The main outcomes of interest are attention deficit as indicated by the IVA-CPT Attention Quotient score and the MCS/PCS on a HRQoL measure (SF-36), in stroke survivors at 6-months after the stroke.

Significance. The findings will be of significance to evidence-based planning of rehabilitation and health service utilization, and improving stroke outcomes. If APT is found to be an effective means of improving attention and HRQoL post-stroke, this trial will provide a new direction for rehabilitation efforts, which have traditionally focussed on motor functioning, language and activities of daily living.

53 Does neuropsychological impairment influence other stroke functional outcomes? A rationale and design of the ASTRO study, 2006 – 2009

Valery Feigin, S Barker-Collo, V. Parag, & P. Brown

For the ASTRO study team, Clinical Trials Unit and Department of Psychology, The University of Auckland, Private Bag 92019, Auckland, New Zealand

Email: [email protected]

Background. There is evidence that neuropsychological factors (e.g., memory, language, visuoperceptual reasoning, processing speed, and executive functioning) are important determinants of functional outcomes after stroke and primarily account for strain in stroke caregivers. However, little is known about the frequency, relationship and predictors of various long-term (5 – 6 year) neuropsychological impairments and other functional outcomes. No such information exists in New Zealand.

Objectives. One of the primary aims of the Auckland Stroke Outcomes (ASTRO) study is to determine if neuropsychological impairment in long-term stroke survivors of IS and ICH is independently associated with the disability, handicap, quality of life, health services usage and economic cost of stroke.

Design. Prospective longitudinal study of long-term (5 to 6-year) stroke outcomes (neuropsychological impairment, impairment, disability, handicap, HRQoL, and survival). The study will source its participants and utilize existing baseline, 6-month and 1-year follow-up data from the population-based stroke incidence study carried out in Auckland in 2002 – 2003 (ARCOS III). Comprehensive neuropsychological measurements combined with all major domains of functional outcome measurements (disability, handicap and HRQoL) in the large study sample of long-term (5 to 6-year) stroke survivors with well CT/MRI verified stroke subtypes are the most unique features of this study. Standard and well-validated measures of neuropsychological impairment (a battery of tests for evaluation of memory, language, visuoperceptual and visual reasoning, executive functioning, response and processing speed, mood and emotion), disability (the MRS), handicap (the LHS) and HRQoL (SF-36). Information on utilization of various healthcare and community resources by stroke survivors and their caregivers will also be collected. Stroke burden in informal caregivers will be assessed by the SF-36 questionnaire and Bakas Caregiving Outcomes Scale. Death outcome data in stroke patients will also be collected.

Significance. If our hypothesis of the significance of neuropsychological impairments on other functional outcomes after stroke is substantiated, this will provide a new direction for rehabilitation efforts in stroke which have traditionally focused solely on motor functioning (particularly walking), language and activities of daily living.

54 A systematic review of treatments for mild traumatic brain injury: An update on Comper, Bisschop, Carnide & Triccio (2005) Citation[1]

Debbie Snell¹, Richard Siegert², Jean Hay-Smith², & L. Surgenor³

¹Brain Injury Rehabilitation Service, Burwood Hospital, Canterbury DHB, ²Rehabilitation Teaching and Research Unit, Wellington School of Medicine and Health Sciences, University of Otago, and³Department of Psychological Medicine, Christchurch School of Medicine and Health Sciences, University of Otago, New Zealand

Email: [email protected]

Background and objectives. Mild traumatic brain injury (MTBI) is a common injury with a complex pattern of symptoms. The research literature is descriptive and lacking in consensus, focusing on diagnostic dilemmas, typical symptoms and their underpinnings, and evaluating outcomes. There is little focus on reviewing the effects of interventions and evidence based information to guide clinical management of patients who demonstrate persisting disability following MTBI is scant. Comper and colleagues Citation[1] recently completed a systematic review of treatments for MTBI and included studies meeting a broad criteria published between 1980 and 2003. The purpose of the present paper is to provide an update of the methods and content of that review.

Study design and methods. A systematic review of the literature was undertaken using the methods outlined by Comper and colleagues, with the addition of further steps to reduce susceptibility to bias for included studies. The search method sought to address limitations noted by the previous authors including potential for publication bias, inclusion of studies in English only, and time constraints on accessing missing data. Studies accepted were critically reviewed for susceptibility to bias using the component approach advocated by the Cochrane Collaboration.

Results. In general, the evidence suggests that education focused interventions are beneficial in MTBI. Emerging trends include the advocation of cognitive rehabilitation approaches and some recognition that the MTBI group demonstrating persisting problems should be considered as a separate group, requiring a different level and type of treatment approach. However the quality of intervention studies continues to be generally poor. Limitations include inconsistent inclusion criteria for MTBI, inadequate comparison groups, small samples and weak methodology. Meta-analysis of data available from trials is difficult given heterogeneity inherent in this research.

Conclusion. There is an identified need for rigorous research evaluating the effects of interventions in MTBI; however some cautious statements can be made about the value of educational interventions. An outline of a proposed intervention trial will be presented, to redress some of the methodological difficulties evident thus far in the available research literature.

55 Täku Reo, Täku Mauri Ora – My voice, my life. Development of a self-assessment outcome measure for mental health consumers: A progress report

Richard Siegert, Sarah Gordon, Pete Ellis, Lynne Mereana Pere, Cheri Ratapu-Foster, & Carmel Haggerty

Rehabilitation Teaching and Research Unit, Wellington School of Medicine and Health Sciences, University of Otago, New Zealand

Email: [email protected]

Aims. To describe the development of this consumer-focused outcome measure, report on data collection to date and outline the intended psychometric analyses.

Background. A review of existing consumer outcome measures in mental health that involved consumer reference groups concluded that these measures were lacking in the local context. The current project is part of a suite of outcome measures for mental health being supported by the Ministry of Health.

Study design and methods. A literature review and extensive consultation with consumer reference groups identified 12 important dimensions of recovery. A team of consumers, mental health professionals and academics developed a 147-item pool in a series of workshops. All items and the format were reviewed at each step by a separate consumer reference group. A draft of the 147-item measure was piloted with 30 mental health consumers.

Results. A prototype of a self-assessed measure of consumer outcome has been developed after a review of existing tools and extensive consultation with consumers. This measure consists of 147 items considered acceptable, relevant and meaningful by mental health consumers that will be analysed psychometrically to develop a brief multi-scale measure. The 12 dimensions of recovery that we hope to measure will be described and examples of items written to capture each construct will be presented.

Conclusion. Täku Reo, Täku Mauri Ora represents a major advance in measurement of mental health outcomes in NZ/Aotearoa. A psychometrically sound measure that consumers can use to evaluate their own recovery.

56 How do rehabilitation patients spend their days? A look at the effect of group therapy classes on time-use and satisfaction

Rebekah Vair & Wendy McKinstry

Middlemore Hospital, Private Bag 93311, Otahuhu, Auckland, New Zealand

Email: [email protected]

Objective. To determine if the implementation of a group therapy program in addition to standard individual sessions would increase time spent in therapy, time spent performing motor activities, time spent with other patients, and patient satisfaction.

Study design and methods. This time-use study was part of a service audit of an inpatient adult neuro-rehabilitation unit. Seven patients were followed over a continuous 11-h period, from 07:00 – 18: 00 h. Observations were taken every 10 min to record where the patient was, whom he/she was with, and what motor activities he/she was performing. Initial observations were conducted in May 2004, with follow-up in September 2006 after implementation of the group classes. Patient questionnaires were completed prior to and following the introduction of group classes. The questionnaire was designed to determine satisfaction with the amount of therapy received, and to give an opportunity to make suggestions and provide feedback.

Results. After the group classes were implemented, patients were observed to spend significantly less time alone: 17.8% of the day vs. 35.4% (p = 0.004) and significantly more time spent with other patients: 41.3% of the day vs. 18.7% (p = 0.001). Those involved in the group class program tended to have increased therapy time and perform certain motor activities such as walking and using the affected arm more often, although these results did not reach statistical significance. Initial questionnaire responses reported the majority of patients were ‘satisfied’ with the amount of therapy received. Themes identified were of boredom and desire for more activity and socialization. Following the implementation of the group classes the majority of patients reported being ‘very satisfied’ with the amount of therapy received. Themes identified were of a good balance between rest and activity, and positive benefits from socialization and a changing environment.

Conclusion. The group class program has shown to increase patient satisfaction and opportunities for socialization in an adult inpatient neuro-rehabilitation setting. Further research is warranted to observe patients over an extended period and determine the effect on rehabilitation outcomes.

57 Evaluating vocational rehabilitation: Barriers and facilitators from a claimants' perspective

Natasha Moloczij, Kath McPherson, C. Cummins, K. Jones, & N. Kayes

On behalf of the EVRNZ group (Evaluating Vocational Rehabilitation in NZ), Auckland University of Technology, New Zealand

Email: [email protected]

Background. Vocational rehabilitation (VR) is a crucial aspect in promoting returning to work after an injury. The New Zealand Injury Prevention, Rehabilitation and Compensation (IPRC) Act 2001 aims to minimize the incidence and impact of injury on the community. However, there is little evidence evaluating to what extent vocational rehabilitation processes meet the goals and intent of the Act and what specific aspects claimants consider most useful and what factors are most problematic.

Aim. Data was drawn from a larger study investigating the extent to which ACC's vocational rehabilitation met the goals and intent of the IPRC Act (2001). This aspect of the study explores claimant's experience of return to work and the perceived barriers and facilitators for returning to work after injury.

Methods. 1600 claimants who had received weekly compensation for more than three weeks between 2003 and 2004 were identified from ACC's national database. Those with serious injury, medical misadventure and sensitive claims were excluded. The questionnaire contained a series of questions about claimant's experience of ACC vocational rehabilitation and included two standardized measures, the SF-36 and Personal Capacities Questionnaire.

Results. Of the 1600, 409 were un-contactable leaving a potential sample pool of 1191. Overall response rate to the questionnaire was 48% (n = 580). Results for the first 444 are available and data will be updated for the presentation. Preliminarily results indicate that 52% thought their return to work was timely. However, 25% reported having difficulty trying to return to work and 38% experienced difficulties coping at work on their return. People experienced more difficulties in these areas as their claim period increased. Initial thematic analysis of open ended questions exploring perceived barriers and facilitators identified support for a graduated return to work and access to resources to be important factors.

Conclusion. Even though half of the claimants felt they did not return to work too soon, many of these experienced difficulties getting back to work. Improved understanding of what claimants consider influential in returning to work after an injury highlights potential future areas for consideration in enhancing vocational rehabilitation processes.

58 Claimant expectations and perceptions of their rights and responsibilities in relation to vocational rehabilitation

C. Cummins, Kath McPherson, K. Jones, & Natasha Moloczij

On behalf of the EVRNZ group (Evaluating Vocational Rehabilitation in NZ), Auckland University of Technology, New Zealand

Email: [email protected]

Background. Revisions to the Injury Prevention, Rehabilitation and Compensation (IPRC) Act 2001 included encouragement towards a partnership between ACC and claimants based on ‘mutual trust, respect and understanding’. This Code of Rights has eight components, including the right to be treated with dignity and respect, to be treated fairly and have your views considered, to effective communication and to be fully informed. Claimant expectations and perceptions of their rights and responsibility in relation to vocational rehabilitation have not been formally evaluated.

Aim. This paper (a small component of a larger, ongoing study – see related submissions) aims to explore the code in relation to claimants' expectations of ACC in assisting them to return to work and their perception of what ACC expected from them.

Methods. A pool of 1600 potential participants receiving weekly compensation for more than three weeks in 2003 – 2004 were invited to participate in the study, comprising a postal questionnaire with standardized heath assessment, general questions relating to their well-being and specific questions relating to the time they were off work and receiving ACC entitlements and their vocational rehabilitation experience.

Results. A total of 1191 of the potential sample pool were contactable and 580 of these completed the questionnaire (48% response rate). Preliminary thematic analysis on two open-ended questions about perceived rights and accountability of claimants has been conducted on the first 444 questionnaires. The findings suggest that the majority of claimants expected financial support. Others stated expectations for rehabilitation, understanding, and information. Claimants perceived that ACC expected honesty and cooperation from them and that their compliance with the system was ACC's main expectation.

Conclusion. The intent of the code of rights was to establish a two-way relationship of cooperation and participation between a large government corporation and individual clients towards achieving a shared goal. The effect perceived by many claimants is a climate of compliance. An unequal power balance in these relationships appears to foster this compliance and may obstruct the development of a trusting partnership.

59 Neuromuscular and architectural changes in quadriceps muscle in elderly patients with unilateral knee osteoarthritis

S. Mairet^1,2, O. Maisetti^2,4, E. Rolland³, & P. Portero^2,4

¹Institute of Myology, Pitié-Salpêtrière hospital, 83 boulevard de l'Hôpital, 75651 Paris Cedex 13, ²Neuro-Orthopaedic Rehabilitation Department, INSERM UMR 731, Rothschild hospital, 33 boulevard de Picpus, 75571 Paris Cedex 12, ³Orthopaedic Surgery and Traumatology Department, Pitié-Salpêtrière hospital, 83 boulevard de l'Hôpital, 75651 Paris Cedex 13, and⁴Sport Sciences Department, Université Paris XII, 61 avenue du Général de Gaulle, 94010 Créteil, France

Email: [email protected]

Background. Knee osteoarthritis (KO) is a joint disease caused by the breakdown and loss of the cartilage of the knee, affecting principally ageing people. Pain and quadriceps muscle weakness are mainly considered as the cause of the functional capacity decreasing.

Objectives. The aim of this study was to determine the mechanisms involved in the muscle weakness in elderly patients with unilateral knee osteoarthritis.

Methods. Seven patients with unilateral knee osteoarthritis participated at this study. We measured knee position sense and isometric maximal voluntary contraction (MVC) of the knee extensors. Electromyographic (EMG) activity of biceps femoris (BF), rectus femoris (RF), vastus lateralis (VL) and vastus medialis (VM) muscles was performed at different levels of contraction (25, 50, 75 and 100% MVC). Neuromuscular efficiency (NME) of quadriceps was also calculated (MVC/EMG). In order to investigate the VL architectural parameters ultrasound images were realised at the median part of the VL for different levels of contraction (25, 50, 75% MVC). All tests were performed on the two sides (KO vs. healthy).

Results. Quadriceps MVC of the affected knee was reduced by 30% (p < 0.01). As compared with the unaffected knee, the VL thickness of the affected knee was 10% smaller (p < 0.05). EMG activity was not different for the VL whereas it was greater for the RF, VM and BF on the unaffected side. NME was higher (26%, p < 0.01) on the unaffected side. Knee position sense was reduced by 33% (p < 0.05), on the affected side.

Conclusions. Quadriceps weakness associated with KO seems to be related to changes in neuromuscular efficiency and muscle wasting rather than pennation angle and fascicule length changes.

60 Strength and EMG activity can display differences in neck muscle function between amateur soccer players and controls

O. Maisetti^1,2, J. Lecompte^1,3, T. Mhajoubi¹, & P. Portero^1,2

¹Neuro-Orthopaedic Rehabilitation Department, INSERM UMR 731, Rothschild hospital, 33 boulevard de Picpus, 75571 Paris Cedex 12, ²Sport Sciences Department, Université Paris XII, 61 avenue du Général de Gaulle, 94010 Créteil, and³Airforce Aerospace Medical Research Institute (IMASSA) BP 73, 91223 Brétigny-sur-Orge, France

Email: [email protected]

Background. Neck muscle strength testing is important in estimating the muscle adaptation as well as the extent of disability and as an indicator of neck dysfunction. In some sports, neck-shoulder disorders are frequent, and in any case cervical spine injuries can present difficulty in both diagnosis and management. Soccer heading has received little attention and the potential adaptation in neck muscles due to chronic practice has not been studied yet.

Objectives. The aim of this study was to examine cervical muscle strength and EMG activity in amateur soccer players (SP) and controls (C).

Methods. Sixteen subjects (8 SP and 8 C) performed maximal isometric neck flexion and extension on a modified isokinetic dynamometer. Muscle strength was normalized to body weight and neck circumference. EMG activity of Sternocleidomastoid (SCM) and Upper Trapezius (UT) muscles was recorded on both sides. EMG activity was normalized to maximal activity when muscles acting in their main function (%max).

Results. SP were stronger than controls for neck extension (32%, p < 0.05) but not during flexion (5%, p > 0.05). There was no between-group difference in SCM antagonistic coactivation during neck extension. However, right UT coactivation during neck extension was higher than the left one in SP only (32% max vs. 16% max, p < 0.05). In addition, greater UT activity during neck flexion was higher in SP (SP: 65% max vs. C: 24% max, p < 0.01) in particular for the right side (SP: 94% max vs. C: 16% max, p < 0.001).

Conclusions. Our results suggest that neural adaptations probably occurred in the Upper Trapezius muscles of amateur SP following chronic heading practice. These findings may have practical ramifications for neck training or rehabilitation and need to be confirmed on high-skilled soccer players.

61 Complex pain patients' experiences of dealing with health providers: A single case study

Duncan Reid, Kathryn McPherson, & Nicola Kayes

Division of Rehabilitation and Occupation Studies, Auckland University of Technology, Private bag 92006, Auckland, New Zealand

Email: [email protected]

Aim. Patients with complex and chronic long-term musculoskeletal conditions have often dealt with a wide range of health providers. This may come about in an attempt to ascertain the diagnosis of the complex problem and also in an attempt to provide the optimal rehabilitation plan. Multiple assessments and interventions however can be challenging for both the client and the health professional that deal with such patients. The aim of this study was to explore what matters to one of these patients in their dealing with multiple health professionals over extended periods of time.

Study design. A qualitative approach was undertaken using a series of open-ended questions, to which the patient wrote a reply and then discussed these with the researcher. These questions explored the patient's experiences in dealing with the health professionals, what helped and what hindered the rehabilitation process.

Results. Several themes emerged from the data of which three main ones were: (i) Being believed: Health professional who gave the patient the idea that they did not think the problem was real, had already made up their mind about the diagnosis or seemed not able fit the patient into the right box, had a detrimental affect on the patient, whereas those health professional who understood and had empathy for the patient had a positive effect on the patient. (ii) Trust: Forming a trusting relationship with the health professional allowed the patient to feel completely comfortable with the therapist and to be able to talk things through, and encourage constantly had a positive influence on the rehabilitation process. A lack of trust meant little progress was made. (iii) Walking alongside: Patients who felt the health professional ‘walked with them’ as they undertook the journey through chronic pain had a positive influence on the rehabilitation process. The concept of coaching was also evident so that the health professional provided advice and changes to the programme at timely intervals. This was associated with collaborative goal-setting. Health professionals who did not set goals or who withdrew from dealing with the patient had a detrimental effect on the rehabilitation process.

Conclusion. Asking patients what is important to them and using this information can be a powerful tool to improve engagement in the rehabilitation process and highlights that failing to inform the process by such input may put in place a system that is designed to fail.

62 Validation of the Memory and Behaviour Problems Checklist for use in acquired brain injury

Diana Jackson¹, Lynne Turner-Stokes², Kath McPherson³, J. Murray⁴, & M. Leese⁴

¹Kings College London School of Medicine Department of Palliative Care, Policy and Rehabilitation, Kings College London, Weston Education Centre, 3rd Floor, Cutcombe Road, Denmark Hill, London SE5 9RJ, ²Kings College London School of Medicine, UK, ³Auckland University of Technology, New Zealand, and⁴Institute of Psychiatry, Kings College London, UK

Email: [email protected]

Aim/objective. The Memory and Behaviour Problems Checklist-1990R (MBPC-1990R) is a 25-item carer-rated measure of (a) problem behaviours, each rated on a 5-point scale for their frequency during the previous week and (b) the level of corresponding carer reaction; that is how much each problem has bothered or upset the carer, rated on a 5-point scale from ‘not at all’ to ‘extremely’. Although originally developed and validated for dementia, its items are relevant to acquired brain injury (ABI). As it had not previously been used in ABI, the aim of this study was to evaluate its validity in this population.

Study design and methods. In a national postal survey carried out to inform service planning, 222 family carers of adults with TBI (49%), strokes (26%), infections (18%), other (7%) completed the MBPC-1990R, Head Injury Behaviour Scale (HIBS), Postal Barthel Index (PBI), Northwick Park Dependency Score (NPDS), Carer Burden Interview (CBI), WHOQOL-BREF and GHQ-28.

Results. The proportions of carers endorsing each of the 25 MBPC-1990R behaviours as a problem for the ABI person cared for ranged from 22 – 84%, supporting their relevance for this group. MBPC-1990R problems correlated well with HIBS problems (r = 0.70), as did MBPC-1990R carer reaction with HIBS distress (r = 0.78) and CBI (r = 0.73) scores, indicating good concurrent validity. Discriminant validity was inferred from the absence of an association between MBPC-1990R problems and the PBI (r = −0.02) and a weak association only with the NPDS (r = 0.24); likewise between MBPC-1990R carer reaction and WHOQOL-BREF physical, psychological, social, environmental sub-scales (r = 0.32 – 0.41) and GHQ-28 scores (r = 0.35). Factor analysis revealed excessive, cognitive, aggressive and passive/low mood sub-scales, which showed good internal consistency and varied within and between groups with brain injuries from different causes.

Conclusion. The MBPC-1990R is supported as a straightforward measure of problem behaviours and corresponding carer reaction. It is suitable for carer-completion by post and can provide useful comparative information on behaviours typically seen in people with different conditions affecting the brain. Further validation is recommended in diverse groups as the sample studied here does not necessarily represent the wider population.

63 Living with my disability

Scott Dumble, Jo Dickson, & Kath McPherson

Auckland University of Technology, New Zealand

Email: [email protected]

Introduction. This poster abstract outlines just some of the things one man who experiences disability would like to help other people understand. The final poster will be a narrative of the key points in Scott's story. Some of the issues he has raised so far are noted below in his own words.

Scott's story:

• I feel frustrated when people think that I'm dumb. I try and talk to them with my communication device and explain to them that I'm not dumb and that I can think for myself and have opinions. Even when I explain to them that I can communicate some people understand but some still do not.

• When people meet me for the first time they have difficulty understanding me. But as they get to know me better it becomes easier for them and less frustrating for me. It takes new people a while to understand my signs for different things. I like to use hand signals and gestures as it's quicker for me than the communicating device.

• How other disabled people are treated in the community makes me sad because it is just unfair. They certainly don't like being treated that way.

• Access into shops and offices can really be hard. Coffee shops are particularly hard because of the many table and chairs, most of the time I have to sit outside which is not very pleasant on a cold, wet day. I cannot go and have coffee on my own as I need to be fed, which upsets me because I would love to be able to have a coffee by myself at a coffee shop. Even if I see something that looks good to eat I can buy it, but I cannot eat it by myself without help.

• We need taxis to go anywhere and this is very expensive so you can't buy as much other things as you would wish to. Our taxis cost more than what a normal person would spend on petrol for their car.

• We all should try to change the community so that disabled are better treated.

64 To explore the housing needs and experiences of people with lower limb amputations in New Zealand

Sheena Hudson¹, Sarah Dean², Philippa Howden-Chapman¹, Kevin Dew¹, & Jo-Ani Robinson¹

¹Department of Public Health, and²Rehabilitation Teaching and Research Unit, Wellington School of Medicine and Health Sciences, University of Otago, New Zealand

Email: [email protected]

Background. Disability relates to the interaction between the person with the impairment and the environment, thus inappropriate housing and access to the community is a barrier that can create disability for a person with impairments and activity limitations Citation[1]. Increasing opportunities for disabled people to live in the community with choice of affordable, quality housing with good community access could therefore be an important part of a secondary prevention strategy to reduce disabilities.

Study design and methods. Twenty key informants with lower limb amputations were recruited through the New Zealand Artificial Limb Board. We conducted semi-structured face-to-face interviews in participants' homes. Further interviews with various providers, identified by the key informants, are planned. This fits with the intended ‘case study’ approach. The interviews were recoded and transcribed and then analysed using computer-assisted techniques Citation[2] and inter-coder auditing.

Results. Preliminary emerging themes from interviews with key informants with lower limb amputations suggest physical, financial and organizational barriers to access within the home and into the community. Other themes also suggest varying physical, financial, social and psychological support from family and organisations. Results also suggest significant participant attitudes showing determination and pragmatism.

Conclusions. Preliminary conclusions suggest the importance of some common sources of information regarding services for those with lower limb amputation, particularly housing modifications, and access to transport. Many of the individuals in agencies involved in with the participants are doing excellent work which is appreciated.

65 Incidence of missed traumatic brain injury (TBI) diagnosis in patients admitted for inpatient rehabilitation following accidental/multi-trauma injuries: Impact on the rehabilitation process

Boris Mak & Samir Anwar

Rehab Plus, Auckland District Health Board, Auckland, New Zealand

Email: [email protected]

Objectives. The purpose of the present study was to determine the incidence of missed traumatic brain injuries (TBI) in patients with traumatic/multiple injuries. We also sought to identify the effect of the missed TBI on rehabilitation outcomes.

Design and setting. Retrospective study; inpatient rehabilitation centre.

Participants. Review of 69 multi-trauma patients admitted to Rehab Plus from 1 January 2004 to 31 December 2005 was undertaken. Rehab Plus is a stand alone rehabilitation center, under Auckland District Health Board in New Zealand. Demographic data (age, sex, ethnic group) were obtained. Physiologic data, including Glasgow Coma Scale from the initial resuscitation, loss of consciousness, duration of post traumatic amnesia and post head injury symptoms were collated and analyzed. For the purpose of the study a missed TBI was defined as a TBI not discovered nor suspected upon admission to Rehab Plus following the initial stay at the acute hospital/ward. CT head scans were also reviewed.

Interventions. Not applicable.

Main Outcome Measures. Functional Independence Measure (FIM) on admission and at discharge, FIM gains, FIM efficiency, and the length of stay (LOS) in Rehab Plus inpatient service.

Results. Of the 69 multi-trauma patients, 17 of them also sustained a traumatic brain injury. Of these 17 TBI patients, 4 were acknowledged at the time of acute hospital care, however, 13 were ‘missed’. This amount to 76.5% (13/17) of missed TBI diagnosed after admission to Rehab Plus, and was not recognized in the acute hospital. Most of the missed TBIs fell under the category of ‘mild’ TBI, presented with post concussion symptoms (like fatigue, headache, memory deficits, etc.) with no clearly documented post traumatic amnesia (PTA), or loss of consciousness (LOC). LOS in missed TBI patients was 49.3 days vs. 42.8 compared to that of the previously diagnosed TBI group. The FIM gains score was 19 vs. 27, reflecting poorer outcomes for the first group.

Conclusions. Victims of multiple injury traumas present a diagnostic and therapeutic challenge: That of discovering all injuries while simultaneously proceeding with resuscitation and maintaining life. It can be one the most clinically challenging situations faced by even the most experienced physician. Injuries may be missed after initial assessment. These undetected injuries can lead to significant morbidity and mortality. This may adversely affect patient outcomes and can damage physician/institutional credibility.

66 Quality of life due to bladder management in spinal cord injured patients

Leanne Parker

Canterbury District Health Board, New Zealand

Email: [email protected]

Aims. With improved medical management of renal complications after spinal cord injury (SCI), selection of method of bladder management should place more emphasis on Quality of Life (QoL). To do this, more knowledge is required about QoL issues specific to the common forms of bladder management. This study aims to elucidate these issues and develop and validate a QoL measurement tool with specific reference to type of bladder management in persons with SCI.

Methods. The common methods of bladder management include Suprapubic Catheterization (SPC) and Intermittent Self-Catheterization (ISC) in men and women, and External Collection Device (ECD) in men. A questionnaire was developed. Common stem questions included issues of general QoL, incontinence, access, urinary infections, sexual function and sexuality. Questions specific to methods and gender were also included. A total of 264 patients met the inclusion criteria and agreed to participate. Validation analysis included content validity, construct validity and reliability. Qualitative data was also collected.

Results. Response rate was 55%. Analysis revealed 1.5% missed data for all participants. Some 79% of the missed data involved the domain on sexuality and sexual function. Question redesign and rechallenge demonstrated no missed data (n = 21). Literature review, discussion with experts and patients, analysis of missed data and predetermined hypotheses, revealed adequate content and construct validity. Hypothesis analysis revealed the significance of urinary incontinence, particularly in women and all those using ISC. Sexuality in men using SPC and men and women using ISC, was less adversely affected than in men using ECD, and women with SPC. Analysis of reliability demonstrated an average kappa statistic of 0.83 (n = 32). Participants' comments indicated further work is required on some question constructs.

Conclusions. The study of this questionnaire has shown sufficient evidence for preliminary validation, and some useful insights into the QoL issues for different methods, indicating we should be more aware of QoL issues when deciding with a patient an appropriate method which takes into account both medical and QoL concerns. Extended testing to a wider population of participants, further work on question construct, additional thought to adding a QOL score and testing of internal consistency to aid validation is required.