Economic analysis of the 'Take Charge' intervention for people following stroke: Results from a randomised trial.

OBJECTIVE: To undertake an economic analysis of the Take Charge intervention as part of the Taking Charge after Stroke (TaCAS) study. DESIGN: An open, parallel-group, randomised trial comparing active and control interventions with blinded outcome assessment. SETTING: Community. PARTICIPANTS: Adults (n = 400) discharged to community, non-institutional living following acute stroke. INTERVENTIONS: The Take Charge intervention, a strengths based, self-directed rehabilitation intervention, in two doses (one or two sessions), and a control intervention (no Take Charge sessions). MEASURES: The cost per quality-adjusted life year (QALY) saved for the period between randomisation (always post hospital discharge) and 12 months following acute stroke. QALYs were calculated from the EuroQol-5D-5L. Costs of stroke-related and non-health care were obtained by questionnaire, hospital records and the New Zealand Ministry of Health. RESULTS: One-year post hospital discharge cost of care was mean (95% CI) $US4706 (3758-6014) for the Take Charge intervention group and $6118 (4350-8005) for control, mean (95% CI) difference $ -1412 (-3553 to +729). Health utility scores were mean (95% CI) 0.75 (0.73-0.77) for Take Charge and 0.71 (0.67-0.75) for control, mean (95% CI) difference 0.04 (0.0-0.08). Cost per QALY gained for the Take Charge intervention was $US -35,296 (=£ -25,524, € -30,019). Sensitivity analyses confirm Take Charge is cost-effective, even at a very low willingness-to-pay threshold. With a threshold of $US5000 per QALY, the probability that Take Charge is cost-effective is 99%. CONCLUSION: Take Charge is cost-effective and probably cost saving.

What does real-world walking mean to people with stroke? An interpretive descriptive study.

PURPOSE: Understanding personal experiences of real-world walking for stroke survivors could assist clinicians to tailor interventions to their clients' specific needs. We explored the research questions: "What does real-world walking mean to people after stroke and how do they think it can be better?" METHOD: Using an Interpretive Descriptive methodology, we purposively sampled eight stroke survivors who reported difficulty walking in the real-world. We sought diversity on key participant characteristics. Participants were interviewed using a semi-structured guide. Data were analysed with thematic analysis. RESULTS: Many found real-world walking, particularly in the outdoors, created opportunities for freedom from dependence and a visible step by step progress, which generated hope for future recovery. Conversely, when participants did not experience sufficient progress, they expressed negative emotions. Participants strove to overcome challenges to their walking goals using everyday routines, planning skills, and confidence building experiences to motivate themselves. They also drew on, and extended, social resources highlighting the relational aspects of real-world walking. CONCLUSIONS: Walking in their real-world provided a meaningful, desirable, but challenging goal for participants that required significant emotional effort. Successful progress in real-world walking builds confidence and hope and can contribute to psychological wellbeing by providing opportunities for successful mastery and social connectedness.IMPLICATIONS FOR REHABILITATIONReal-world settings can be unpredictable which makes walking in the real-world after stroke demanding.Positive experiences of walking in the real-world can provide significant psychological benefits to stroke survivors.Many survivors need to carefully concentrate on the act of walking in outdoor settings.Pre-planning routes, confidence-building experiences and developing daily routines may help patients overcome these challenges.

The effect of the Take Charge intervention on mood, motivation, activation and risk factor management: Analysis of secondary data from the Taking Charge after Stroke (TaCAS) trial.

OBJECTIVE: To use secondary data from the Taking Charge after Stroke study to explore mechanisms for the positive effect of the Take Charge intervention on physical health, advanced activities of daily living and independence for people after acute stroke. DESIGN: An open, parallel-group, randomised trial with two active and one control intervention and blinded outcome assessment. SETTING: Community. PARTICIPANTS: Adults (n = 400) discharged to community, non-institutional living following acute stroke. INTERVENTIONS: One, two, or zero sessions of the Take Charge intervention, a self-directed rehabilitation intervention which helps a person with stroke take charge of their own recovery. MEASURES: Twelve months after stroke: Mood (Patient Health Questionnaire-2, Mental Component Summary of the Short Form 36); 'ability to Take Charge' using a novel measure, the Autonomy-Mastery-Purpose-Connectedness (AMP-C) score; activation (Patient Activation Measure); body mass index (BMI), blood pressure (BP) and medication adherence (Medication Adherence Questionnaire). RESULTS: Follow-up was near-complete (388/390 (99.5%)) of survivors at 12 months. Mean age (SD) was 72.0 (12.5) years. There were no significant differences in mood, activation, 'ability to Take Charge', medication adherence, BMI or BP by randomised group at 12 months. There was a significant positive association between baseline AMP-C scores and 12-month outcome for control participants (1.73 (95%CI 0.90 to 2.56)) but not for the Take Charge groups combined (0.34 (95%CI -0.17 to 0.85)). CONCLUSION: The mechanism by which Take Charge is effective remains uncertain. However, our findings support a hypothesis that baseline variability in motivation, mastery and connectedness may be modified by the Take Charge intervention.

Understanding the therapeutic alliance in stroke rehabilitation.

PURPOSE: The quality of the therapeutic alliance between a client and their clinician is thought to play an important role in healthcare but there is limited research about this concept in stroke rehabilitation. This study explored the core components of a therapeutic alliance and the factors perceived to impact on its development in a stroke rehabilitation unit. METHODS: Interpretive description methodology was used to gather and synthesise participants' experiences of their therapeutic relationships. Ten individual client interviews and one clinician focus group were conducted. Data was were analysed using conventional content analysis. RESULTS: A therapeutic alliance appeared to consist of three overlapping core components: a personal connection, a professional collaboration, and family collaboration. Clients valued these components to different degrees and priorities could change over time. Alliance breakdowns were perceived to stem from a clinician's incorrect assumptions about their client's relationship preferences or lack of responsiveness to their needs. Recovery of the alliance seemed to depend on the strength of the pre-existing relationship and steps taken to repair it. CONCLUSIONS: Establishing and maintaining a therapeutic alliance appears to be an individualised and complex process. A clinician's ability to use their personal attributes therapeutically, and professional skills flexibly, appeared integral to relationship quality.IMPLICATIONS FOR REHABILITATIONDeveloping therapeutic relationships requires a person-centred and sometimes family/whanau-centred approach.The judicious use of self-disclosure may achieve emotional proximity and yet maintain professional boundaries.Maintaining relationship health requires a proactive approach to detect and manage relationship disruptions.

Taking Charge after Stroke: A randomized controlled trial of a person-centered, self-directed rehabilitation intervention.

BACKGROUND AND PURPOSE: "Take Charge" is a novel, community-based self-directed rehabilitation intervention which helps a person with stroke take charge of their own recovery. In a previous randomized controlled trial, a single Take Charge session improved independence and health-related quality of life 12 months following stroke in Maori and Pacific New Zealanders. We tested the same intervention in three doses (zero, one, or two sessions) in a larger study and in a broader non-Maori and non-Pacific population with stroke. We aimed to confirm whether the Take Charge intervention improved quality of life at 12 months after stroke in a different population and whether two sessions were more effective than one. METHODS: We randomized 400 people within 16 weeks of acute stroke who had been discharged to institution-free community living at seven centers in New Zealand to a single Take Charge session (TC1, n = 132), two Take Charge sessions six weeks apart (TC2, n = 138), or a control intervention (n = 130). Take Charge is a "talking therapy" that encourages a sense of purpose, autonomy, mastery, and connectedness with others. The primary outcome was the Physical Component Summary score of the Short Form 36 at 12 months following stroke comparing any Take Charge intervention to control. RESULTS: Of the 400 people randomized (mean age 72.2 years, 58.5% male), 10 died and two withdrew from the study. The remaining 388 (97%) people were followed up at 12 months after stroke. Twelve months following stroke, participants in either of the TC groups (i.e. TC1 + TC2) scored 2.9 (95% confidence intervals (CI) 0.95 to 4.9, p = 0.004) points higher (better) than control on the Short Form 36 Physical Component Summary. This difference remained significant when adjusted for pre-specified baseline variables. There was a dose effect with Short Form 36 Physical Component Summary scores increasing by 1.9 points (95% CI 0.8 to 3.1, p < 0.001) for each extra Take Charge session received. Exposure to the Take Charge intervention was associated with reduced odds of being dependent (modified Rankin Scale 3 to 5) at 12 months (TC1 + TC2 12% versus control 19.5%, odds ratio 0.55, 95% CI 0.31 to 0.99, p = 0.045). CONCLUSIONS: Confirming the previous randomized controlled trial outcome, Take Charge-a low-cost, person-centered, self-directed rehabilitation intervention after stroke-improved health-related quality of life and independence. CLINICAL TRIAL REGISTRATION-URL: http://www.anzctr.org.au. Unique identifier: ACTRN12615001163594.

Support workers' experiences of work stress in long-term care settings: a qualitative study.

Background: Support-workers' performance and well-being are challenged by increasingly high workloads and poor working conditions, leading to high levels of occupational stress. Aims: To explore the experiences of work stress for support-workers in New Zealand residential facilities. Design: An Interpretive Descriptive study. Methods: Data from ten (n = 10) support-workers were collected between December 2013 and June 2014, using semi-structured in-depth face-to-face interviews. Thematic analysis was used to identify key themes that captured participant reports of their experiences. Results: Work stress was conceptualized by participants as being an everyday experience of having too much to deal with and feeling under constant pressure. It appeared to be a complex and fluid experience representing an inherent, dynamic tension between reasons to be a caregiver and the burden of caregiving. Participants highlighted a range of influencing factors (including lack of recognition, person and work context, and coping strategies), which may account for that fluidity. Conclusion: The findings extend current knowledge about support-workers' work stress by identifying the challenges relating to the lack of recognition of their role and expertize, the unintended consequences of person-centered care and the challenges faced by migrant support-workers.

The process of adjustment over time following stroke: A longitudinal qualitative study.

Understanding how people adjust following stroke is essential to optimise recovery and ensure services are responsive to people's needs. This study aimed to explore people's experiences over the first three years post-stroke and identify what helped or hindered recovery. As part of a longitudinal, qualitative descriptive study, 55 people and 27 significant others purposefully selected from a population-based stroke incidence study were interviewed 6, 12, 24 and 36 months post-stroke. Interviews were audio taped and transcribed verbatim. Participants described an ongoing process of shock, disruption, and fear, making sense of what happened, needing to fit in with what's offered, finding what works for them and evolving a new normal, whilst managing the ups and downs of life. This process needed to be re-negotiated over time, as people experienced changes in their recovery, comorbidities and/or wider circumstances. The adjustment process continued over the three years post-stroke, even for those who perceived that they were recovering well. Rehabilitation services need to support patients to make sense of their stroke, navigate the health system, address individual concerns and priorities and to know what, when and how much to challenge themselves. Rehabilitation plans need to be revised as circumstances change to facilitate adjustment following a stroke.

Recovery and adaptation after traumatic brain injury in New Zealand: Longitudinal qualitative findings over the first two years.

Knowledge about the impacts of traumatic brain injury (TBI) and aspects that influence recovery and adaptation are key to understanding how best to provide appropriate services. Whilst injury experiences have been documented, factors that help or hinder recovery and adaptation over time and across injury severities remain unclear. We present overarching findings addressing these matters in a large longitudinal qualitative study of recovery and adaptation following TBI. People experiencing TBI (n = 52) and their significant others (n = 37) were interviewed at 6-, 12- and 24-months post-injury. Data were thematically analysed cross-sectionally and longitudinally. Two overarching themes were captured in the analysis: making room for recovery and cultivating important resources. Themes comprise circumstances and processes that changed and developed over time in different ways for different participants. Key complexities within the overarching themes included the notion of "acceptance" and the role it played in allowing for recovery and adaptation; and the concept of "self" as a resource aiding recovery, but one that is perpetually at risk due to the intersection between the functional and social effects of the injury. Developing concepts of TBI recovery and living with TBI were central processes across diverse participants, but necessarily individualised in how they could be enacted.

Making sense of recovery after traumatic brain injury through a peer mentoring intervention: a qualitative exploration.

OBJECTIVE: To explore the acceptability of peer mentoring for people with a traumatic brain injury (TBI) in New Zealand. DESIGN: This is a qualitative descriptive study exploring the experiences reported by mentees and mentors taking part in a feasibility study of peer mentoring. Interviews with five mentees and six mentors were carried out. Data were analysed using conventional content analysis. SETTING: The first mentoring session took place predischarge from the rehabilitation unit. The remaining five sessions took place in mentees' homes or community as preferred. PARTICIPANTS: Twelve people with TBI took part: six mentees (with moderate to severe TBI; aged 18-46) paired with six mentors (moderate to severe TBI >12 months previously; aged 21-59). Pairing occurred before mentee discharge from postacute inpatient brain injury rehabilitation. Mentors had been discharged from rehabilitation following a TBI between 1 and 5 years previously. INTERVENTION: The peer mentoring programme consisted of up to six face-to-face sessions between a mentee and a mentor over a 6-month period. The sessions focused on building rapport, exploring hopes for and supporting participation after discharge through further meetings and supported community activities. RESULTS: Data were synthesised into one overarching theme: making sense of recovery. This occurred through the sharing of experiences and stories; was pivotal to the mentoring relationship; and appeared to benefit both mentees and mentors. Mentors were perceived as valued experts because of their personal experience of injury and recovery, and could provide support in ways that were different from that provided by clinicians or family members. Mentors required support to manage the uncertainties inherent in the role. CONCLUSIONS: The insight mentors developed through their own lived experience established them as a trusted and credible source of hope and support for people re-engaging in the community post-TBI. These findings indicate the potential for mentoring to result in positive outcomes.

Development of a toolkit to enhance care processes for people with a long-term neurological condition: a qualitative descriptive study.

OBJECTIVE: To (A) explore perspectives of people with a long-term neurological condition, and of their family, clinicians and other stakeholders on three key processes: two-way communication, self-management and coordination of long-term care; and (B) use these data to develop a 'Living Well Toolkit', a structural support aiming to enhance the quality of these care processes. DESIGN: This qualitative descriptive study drew on the principles of participatory research. Data from interviews and focus groups with participants (n=25) recruited from five hospital, rehabilitation and community settings in New Zealand were analysed using conventional content analysis. Consultation with a knowledge-user group (n=4) and an implementation champion group (n=4) provided additional operational knowledge important to toolkit development and its integration into clinical practice. RESULTS: Four main, and one overarching, themes were constructed: (1) tailoring care:referring to getting to know the person and their individual circumstances; (2) involving others: representing the importance of negotiating the involvement of others in the person's long-term management process; (3) exchanging knowledge: referring to acknowledging patient expertise; and (4) enabling: highlighting the importance of empowering relationships and processes. The overarching theme was: assume nothing. These themes informed the development of a toolkit comprising of two parts: one to support the person with the long-term neurological condition, and one targeted at clinicians to guide interaction and support their engagement with patients. CONCLUSION: Perspectives of healthcare users, clinicians and other stakeholders were fundamental to the development of the Living Well Toolkit. The findings were used to frame toolkit specifications and highlighted potential operational issues that could prove key to its success. Further research to evaluate its use is now underway.

Engaging people experiencing communication disability in stroke rehabilitation: a qualitative study.

BACKGROUND: Engagement is commonly considered important in stroke rehabilitation, with some arguing it is essential for positive patient outcomes. An emerging body of research indicates the practitioner influences engagement through their ways of relating, communicating and working with the patient. People experiencing communication disability may face particular challenges with engagement as a practitioner's communication and interactional patterns may limit their ability to engage. AIMS: To understand how rehabilitation practitioners worked to engage people experiencing communication disability throughout the course of rehabilitation. METHODS & PROCEDURES: A qualitative study using the Voice Centred Relational Approach. Longitudinal observational and interview data were gathered from 28 practitioners and three people experiencing communication disability in inpatient and community stroke rehabilitation services. Data were analyzed using the Listening Guide. OUTCOMES & RESULTS: Engagement was a relational practice on the part of the rehabilitation practitioner. It was underpinned by a relational philosophy and characterized by three core processes: embedding relational work throughout rehabilitation; getting to know the patient and working in ways valued by the patient; and communicating using relational dialogue and supported conversation. Practitioners wove these together with their technical, disciplinary-based work and rehabilitation tasks. CONCLUSIONS & IMPLICATIONS: Patient engagement was constructed through relationships and strongly influenced by the practitioners' way of thinking about and enacting practice, challenging the idea that engagement is solely an intrinsic patient state and behaviour. The findings raise questions about which aspects of rehabilitation work and communication are most valuable when working to engage people experiencing communication disability. Viewing engagement as a relational practice and understanding the different ways this is enacted may support practitioners to reflect on their understandings of engagement, their patient's engagement, their ways of working, and the frames and philosophies that surround and influence their practice.

Strengths and Difficulties Questionnaire: internal validity and reliability for New Zealand preschoolers.

OBJECTIVES: This observational study examines the internal construct validity, internal consistency and cross-informant reliability of the Strengths and Difficulties Questionnaire (SDQ) in a New Zealand preschool population across four ethnicity strata (New Zealand European, Maori, Pasifika, Asian). DESIGN: Rasch analysis was employed to examine internal validity on a subsample of 1000 children. Internal consistency (n=29 075) and cross-informant reliability (n=17 006) were examined using correlations, intraclass correlation coefficients and Cronbach's alpha on the sample available for such analyses. SETTING AND PARTICIPANTS: Data were used from a national SDQ database provided by the funder, pertaining to New Zealand domiciled children aged 4 and 5 and scored by their parents and teachers. RESULTS: The five subscales do not fit the Rasch model (as indicated by the overall fit statistics), contain items that are biased (differential item functioning (DIF)) by key variables, suffer from a floor and ceiling effect and have unacceptable internal consistency. After dealing with DIF, the Total Difficulty scale does fit the Rasch model and has good internal consistency. Parent/teacher inter-rater reliability was unacceptably low for all subscales. CONCLUSION: The five SDQ subscales are not valid and not suitable for use in their own right in New Zealand. We have provided a conversion table for the Total Difficulty scale, which takes account of bias by ethnic group. Clinicians should use this conversion table in order to reconcile DIF by culture in final scores. It is advisable to use both parents and teachers' feedback when considering children's needs for referral of further assessment. Future work should examine whether validity is impacted by different language versions used in the same country.

Living Life After Traumatic Brain Injury: Phase 1 of a Longitudinal Qualitative Study.

OBJECTIVE: To explore what helps and hinders recovery and adaptation after disabling traumatic brain injury (TBI) and make recommendations for improving service responsiveness. DESIGN: A longitudinal qualitative descriptive study across all TBI severities. SETTING: Community. PARTICIPANTS: Forty people with TBI, and 22 significant others, 6 to 9 months following a TBI. MAIN MEASURES: Semistructured interviews, analyzed using qualitative description, focused on (a) key areas of importance or concern and (b) strategies or actions that people found helpful or that hindered recovery. RESULTS: Traumatic brain injury produced a complex set of challenges in keeping up with life, and understanding what having a TBI means for, and to, me. This period encompassed a tangled fit and misfit in life as brain injury did not occur in isolation. People had to actively change some aspects of life and yet allow other changes to happen. Valued supports from others included being looked out for and having someone to help drive the process. CONCLUSION: Improved services delivery and better outcomes may result if we respond to the person within his or her context; listen, believe, and acknowledge the person's story through our actions; and avoid assumptions about aspects of life that mean most to people and who/what may help best.

Co-constructing engagement in stroke rehabilitation: a qualitative study exploring how practitioner engagement can influence patient engagement.

OBJECTIVE: To explore how practitioner engagement and disengagement occurred, and how these may influence patient care and engagement. DESIGN: A qualitative study using the Voice Centred Relational Methodology. Data included interviews, focus groups and observations. SETTING: Inpatient and community stroke rehabilitation services. SUBJECTS: Eleven people experiencing communication disability after stroke and 42 rehabilitation practitioners. INTERVENTIONS: Not applicable. RESULTS: The practitioner's engagement was important in patient engagement and service delivery. When patients considered practitioners were engaged, this helped engagement. When they considered practitioners were not engaged, their engagement was negatively affected. Practitioners considered their engagement was important but complex. It influenced how they worked and how they perceived the patient. Disengagement was taboo. It arose when not feeling confident, when not positively impacting outcomes, or when having an emotional response to a patient or interaction. Each party's engagement influenced the other, suggesting it was co-constructed. CONCLUSIONS: Practitioner engagement influenced patient engagement in stroke rehabilitation. Practitioner disengagement was reported by most practitioners but was often a source of shame.

Work Limitations 4 Years After Mild Traumatic Brain Injury: A Cohort Study.

OBJECTIVE: To explore employment status, work limitations, and productivity loss after mild traumatic brain injury (TBI). DESIGN: Inception cohort study over 4 years. SETTING: General community. PARTICIPANTS: Adults (N=245; >16y at the time of injury) who experienced a mild TBI and who were employed prior to their injury. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Details of the injury, demographic information, and preinjury employment status were collected from medical records and self-report. Symptoms and mood were assessed 1 month postinjury using the Rivermead Post-Concussion Symptom Questionnaire and the Hospital Anxiety and Depression Scale. Postinjury employment status and work productivity were assessed 4 years postinjury using the Work Limitations Questionnaire. RESULTS: Four years after mild TBI, 17.3% of participants had exited the workforce (other than for reasons of retirement or to study) or had reduced their working hours compared with preinjury. A further 15.5% reported experiencing limitations at work because of their injury. Average work productivity loss was 3.6%. The symptom of taking longer to think 1 month postinjury significantly predicted work productivity loss 4 years later (ß=.47, t=3.79, P≤.001). CONCLUSIONS: Although changes in employment status and difficulties at work are likely over time, the results indicate increased unemployment rates, work limitations, and productivity loss in the longer term after a mild TBI. Identification of cognitive difficulties 1 month after TBI in working aged adults and subsequent interventions to address these difficulties are required to facilitate work productivity.

Interventions to improve real-world walking after stroke: a systematic review and meta-analysis.

OBJECTIVE: This study aimed to determine the effectiveness of current interventions to improve real-world walking for people with stroke and specifically whether benefits are sustained. DATA SOURCES: EBSCO Megafile, AMED, Cochrane, Scopus, PEDRO, OTSeeker and Psychbite databases were searched to identify relevant studies. REVIEW METHODS: Proximity searching with keywords such as ambulat*, walk*, gait, mobility*, activit* was used. Randomized controlled trials that used measures of real-world walking were included. Two reviewers independently assessed methodological quality using the Cochrane Risk of Bias Tool and extracted the data. RESULTS: Nine studies fitting the inclusion criteria were identified, most of high quality. A positive effect overall was found indicating a small effect of interventions on real-world walking (SMD 0.29 (0.17, 0.41)). Five studies provided follow-up data at >3-6 months, which demonstrated sustained benefits (SMD 0.32 (0.16, 0.48)). Subgroup analysis revealed studies using exercise alone were not effective (SMD 0.19 (-0.11, 0.49)), but those incorporating behavioural change techniques (SMD 0.27 (0.12, 0.41)) were. CONCLUSIONS: A small but significant effect was found for current interventions and benefits can be sustained. Interventions that include behaviour change techniques appear more effective at improving real-world walking habits than exercise alone.

Translating knowledge into practice: An exploratory study of dementia-specific training for community-based service providers.

Objective To develop, deliver, and evaluate dementia-specific training designed to inform service delivery by enhancing the knowledge of community-based service providers. Methods This exploratory qualitative study used an interdisciplinary, interuniversity team approach to develop and deliver dementia-specific training. Participants included management, care staff, and clients from three organizations funded to provide services in the community. Data on the acceptability, applicability, and perceived outcomes of the training were gathered through focus group discussions and individual interviews. Transcripts were analyzed to generate open codes which were clustered into themes and sub-themes addressing the content, delivery, and value of the training. Findings Staff valued up-to-date knowledge and "real stories" grounded in practice. Clients welcomed the strengths-based approach. Contractual obligations impact on the application of knowledge in practice. Implications The capacity to implement new knowledge may be limited by the legislative policies which frame service provision, to the detriment of service users.