Patients' and clinicians' views on shared decision making in cancer care: a qualitative study of Aotearoa New Zealand patients' and clinicians' perspectives.

AIMS: Oncology stakeholders' view on shared decision making (SDM) in Aotearoa New Zealand is not well described in the literature. This study aimed to explore the perspectives of patients, clinicians and other cancer care stakeholders on shared decision making, and how and why shared decision making in cancer care can be viable and appropriate for patients and healthcare providers. METHODS: Non-random, purposive sampling, combined with advertisement and snowball recruitment identified patient, whanau and healthcare provider participants for qualitative interviews. One-hour, semi-structured interviews were conducted to elicit perspectives on SDM. Data was analysed using Directed Content Analysis. RESULTS: Thirty-one participants were interviewed. SDM conceptualisations primarily concerned the sharing of information. Participants' stories highlighted patients' and whanau willingness to participate in making decisions about their care, to hold authority in this process, and to have their needs and preferences considered beyond the biomedical model. Patients and clinicians identified a range of factors moderating the extent of SDM, creating a gap between SDM expectations and practice. CONCLUSIONS: These data highlight the complexity of information needs in cancer care, and the discrepancy between patients' and their whanau and clinicians' views. This study increases our understanding of cancer stakeholders' expectations of SDM by highlighting various views on the meaning of SDM, informational needs and decision making engagement level. These findings can aid clinicians in creating space for patients to exercise their right to self-determination/rangatiratanga of health and wellbeing. Future work should explore approaches and implementations of SDM to facilitate an equitable experience of cancer care.

The effectiveness of peer-led interventions to improve work-related psychosocial outcomes and reduce turnover of support workers in residential aged care: A systematic review and meta-analysis.

Background: Support workers are central to the delivery of residential aged care, but the workforce is facing increasing work demands and widespread shortages. This contributes to high rates of burnout, decreased job satisfaction and high staff turnover. Peer-led interventions are reported to be effective but it is necessary to use evidence-based interventions to support this key workforce group. Objective: This study aimed to evaluate the scientific evidence on effectiveness of strategies improving psychosocial and turnover-related outcomes for support workers in aged care that could be incorporated into a peer-led intervention. Design: Systematic review and meta-analyses of experimental and quasi-experimental studies. Setting: Residential aged care. Methods: A systematic literature review was conducted using MEDLINE (via PubMed), EMBASE (via Scopus), and CINAHL (via EBSCO). We included studies examining the effectiveness of workplace interventions aiming to reduce aged care support workers' turnover rates and/or improve their work-related psychosocial outcomes (such as work stress, job satisfaction, self-esteem, and other). A number of meta-analyses using a mixed-effects model were performed to calculate standardized mean differences and odds ratios. Results: Fifty-one studies were included: 15 randomised controlled trials (RCTs), 19 non-RCTs and 17 Pre-Post studies. Most of the studies were rated as having 'high' or 'very high risk of bias'. The studies were clustered by intervention type: 1) knowledge-based, 2) interpersonal skills-based, 3) team-building, and 4) self-care. Knowledge-based interventions were the most used approach, with 26 studies in this category, and frequently reported improvements in stress- and satisfaction-related outcomes. There were twelve interpersonal skills-based and nine team-building interventions, which often reported decreased work stress, staff turnover, and intention to quit. There were four self-care interventions of which only one reported improvements in stress-related outcomes. Meta-analyses showed that only knowledge-based interventions resulted in statistically significant improvements: lower staff turnover rates (OR 0.47, 95 %CI: 0.37, 060), and higher scores for job/life satisfaction (SMD 0.26, 95 % CI: 0.05, 0.46) and staff attitude (SMD 0.23, 95 % CI: 0.05, 0.45). Conclusion: This review found numerous strategies that have been trialled to improve support workers' psychosocial- and turnover-related outcomes. Most studies reported improvements in outcomes. However, our meta-analyses suggest that the effect sizes were small and mostly non-significant, with the evidence being of low certainty. The evidence for effectiveness of knowledge-based interventions appears the most convincing, with statistically significant improvements reported for turnover rates, job/life satisfaction and staff attitude. More high-quality studies are needed to consolidate the existing evidence. PROSPERO registration number: CRD42017059007; 02 June 2017.Tweetable abstract: Knowledge-based interventions most promising in improving support workers' outcomes in aged care. #agedcare #staffturnover.

Measuring health consumers' engagement at the governance level: development and validation of the Middlemore Consumer Engagement Questionnaire.

AIM: To develop and validate a questionnaire to measure health CE at governance level. METHOD: This study used qualitative and quantitative methods (including focus groups, cognitive interviews and an international survey), and consisted of two phases. In Phase 1, an initial list of items was generated and refined with feedback from health consumer representatives. In Phase 2, a draft survey was distributed to n=227 consumers from New Zealand, Australia and Canada. The benefit and relevance of using the questionnaire was explored through face-to-face interviews with five CE leaders from New Zealand healthcare organisations. RESULTS: The proposed questionnaire comprises 25 statements relating to CE. Respondents indicate their level of agreement with the statements on a five-point Likert-type scale. Focus group and cognitive interview participants found the questionnaire relevant and easy to understand. The questionnaire scores correlated with the PPEET, another instrument measuring consumer engagement, and showed excellent internal consistency (Cronbach's alpha=0.97), unidimensionality and test-retest reliability (r=0.84). CONCLUSION: The proposed questionnaire measures CE at governance level and can be used for international comparisons and benchmarking. It showed sound psychometric properties and its value and relevance was recognised by health consumer representatives and leaders with CE roles in New Zealand healthcare organisations.

Constructing Normalcy in Dementia Care: Carers' Perceptions of Their Roles and the Supports They Need.

BACKGROUND AND OBJECTIVES: People with dementia are critically dependent on their carers when accessing and utilizing health care. To inform health care development and delivery, we aimed to explore carers' perceptions of their role in caring for a family member with dementia and to identify carers' skills and attributes and factors impacting on care. RESEARCH DESIGN AND METHODS: We used semistructured interviews to collect data from 25 carers supporting older adults with dementia. Data were thematically analyzed and the paradigm model was used to guide theory development. RESULTS: "Constructing normalcy" was central to all carers did, impacted by stage of life and relationship status and driven by a holistic focus on their care-recipient's quality of life. Goals guiding care were: keeping the peace; facilitating participation, happiness and independence; and ensuring safety. Enablers included: social contact; knowledge; and quality social services. Barriers included health and legal issues; symptoms of dementia; and reduced knowledge. These goals kept the peace and reduced stress for the cared-for person, but often at the cost of unrelenting responsibility and loss of carers' original roles. Discussion and Implications: As carers are so critical to the access and uptake of health care of those with dementia, health professionals and services need to support carers in their quest to construct normalcy. Our findings provide guidance to assist in ensuring appropriate support and understanding of carers work in order to optimize dementia health care delivery.

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.

Incidence and outcomes of major trauma in New Zealand: findings from a feasibility study of New Zealand's first national trauma registry.

AIMS: The aim of the study was to pilot the feasibility of long-term outcomes data collection from adult major trauma survivors in New Zealand. This initial paper aims to characterise the New Zealand major trauma population in terms of long-term disability and functional outcomes after major trauma. METHODS: A prospective cohort study of adults who had survived major trauma was conducted between June 2015 and December 2016 at two major trauma centres in Auckland. RESULTS: Of 256 trauma referrals, 112 (44%) were confirmed eligible and consented. One hundred completed the survey at six months and 83 at 12 months. A majority of the study sample were male (72%), under 65 years (84%), with a disproportionally higher number of Maori in the sample (23%). At six months post-injury, the majority of participants were categorised as experiencing either moderate disability (37%) or good recovery (42%). Half of the participants experienced moderate pain at both 6 and 12 months post-injury (50% and 52% respectively), and problems with their usual activities at six months post-injury (51%). CONCLUSIONS: Most study participants made a good recovery, but there was still a large group of people experiencing disability, pain and not in paid employment at 12 months post-injury.

Measuring Neurobehavioral Functioning in People With Traumatic Brain Injury: Rasch Analysis of Neurobehavioral Functioning Inventory.

OBJECTIVE: To examine internal construct validity of the Neurobehavioral Functioning Inventory (NFI) by applying Rasch analysis. SETTING: An outpatient rehabilitation program trial in New Zealand employing a goal-setting intervention in people with traumatic brain injury (TBI). PARTICIPANTS: One hundred eight people (mean age = 46 years; 73% male) between 6 months and 5 years post-TBI. DESIGN: Rasch analysis of the NFI (Partial Credit Model). RESULTS: Three NFI subscales were not unidimensional and at least 4 items in each subscale had disordered response categories. Two items showed differential item functioning by age, 1 item by educational attainment, and 2 items were found to misfit the overall construct. These items were excluded from the total score calculation. The revised scale fit the Rasch model and supported the internal construct validity of the NFI. CONCLUSIONS: Current scoring of the NFI subscales for people with TBI in New Zealand does not meet the requirements of the Rasch model. The revised version of NFI can improve the interpretation of scores but should be further tested with people with TBI in other settings.

Using feedback from patient-reported outcome measures in mental health services: a scoping study and typology.

OBJECTIVE: Routine evaluation of mental health services has become widespread, and the use of patient-reported outcome measures (PROMs) as clinical aids or discussion tools has been receiving increasing attention. The purpose of this scoping study was to provide a typology of the diverse ways in which studies reporting on PROM use in mental health services have utilized PROMs. METHODS: Iterative scoping searches of the literature identified articles reporting on the use of PROM feedback in mental health settings, which were then categorized to develop a typology along a dimension of intensity of use of PROM feedback, ranging from no feedback to patient and clinician to clinician-patient discussion that followed a formalized structure. RESULTS: Of the 172 studies that were identified, 27 were grouped into five categories, ranging from studies in which there was no PROM feedback to clinician or patient to studies in which a formalized structure was available by which PROM feedback could be discussed between clinician and patient. Of the 11 studies in the category with formalized feedback, nine reported some significant effects of feedback compared with a control condition, and two reported partial significant effects. CONCLUSIONS: The proposed procedural typology helps explain the diversity of results from studies reporting on the effects of PROM feedback, by highlighting that PROM feedback appears to be more effective when integrated in a formalized and structured manner. Future work is required to isolate these effects from common procedural correlates, such as monitoring of the therapeutic alliance.