Improving patient experience and outcomes following serious injury.

AIM: To explore injured patients' experiences of care to identify areas for improvement in routine service delivery from surgical teams in the transition from inpatient to community-based care. METHODS: Qualitative study drawing on 17 in-depth, semi-structured interviews, conducted from 1 October 2017 to 31 November 2017, with trauma patients (and patient-nominated key support people and health or social care professionals) registered by the Midland Trauma System Registry (New Zealand). RESULTS: All patient respondents had been under the primary care of surgical sub-specialty teams at Waikato Hospital rather than the specialised trauma service that primarily cares for patients with major multi-system trauma. Patients perceived their pre-hospital and emergency care as high quality and highly valued the compassion of staff during their inpatient phase of care. Exceptions were the perception of communication gaps across the spectrum of care from admission to discharge and beyond, limited access to psychosocial services to manage ongoing psychological trauma and a lack of preparedness for discharge. Following discharge, respondents reported the high level of reliance on key support people, inadequate information provision about what to expect in relation to the journey through the health system after discharge, and a lack of coordination of post-discharge care. CONCLUSION: This study highlights perceived issues in the patient care pathway in the transition from inpatient to community-based care, especially communication and discharge information provided by surgical clinical teams and Accident Compensation Corporation (ACC). Comprehensive inpatient care and clinical handover to primary care (rather than discharge planning processes) by dedicated clinical trauma services may provide more holistic models for surgical services to improve their influence on the transition of trauma patients into the community, assisted by organisation changes and support to enable effective service delivery. Specifically, trauma patients and their carers perceived the need for better screening and treatment for psychological trauma in the inpatient and outpatient setting; better information exchange prior to the transition from inpatient to primary care; more convenient and accessible follow-up services including a single point of contact for coordination of post-discharge care; and acknowledgement and practical support to relieve the significant and pervasive carer burden identified in this study. These findings provide the opportunity to implement focused system changes to provide more equitable and effective support in the transition to community care and beyond. The end result will be better experiences for patients and whanau, and improved health and vocational outcomes following serious injury.

He Pikinga Waiora: supporting Maori health organisations to respond to pre-diabetes.

BACKGROUND: Type 2 Diabetes (T2D) is a common long-term condition affecting the health and wellbeing of New Zealanders; one in every four New Zealanders is pre-diabetic. Maori, the Indigenous people of New Zealand, are at an increased risk of developing pre-diabetes and T2D and there are significant inequities between Maori and non-Maori for T2D complications. The purpose of this study was to explore the questions of how the strengths of Maori heath organisations may be leveraged, and how the barriers and constraints experienced by Maori health organisations may be negotiated, for the benefit of Maori; and from a systems perspective, to identify strategic opportunities that may be considered and applied by Maori health organisations, funders and policy makers to respond more effectively to pre-diabetes and reduce health inequities between Maori and non-Maori. METHODS: Utilising case study methodology, a range of data sources were triangulated including nine semi-structured interviews, documents, and a diabetes system map to identify possible strategic opportunities for key stakeholders to respond more effectively to pre-diabetes. RESULTS: Key themes and possible actions to improve health outcomes for Maori with pre-diabetes include: (1) Recognising Maori health organisations as conduits for the community voice and influential partners in the community to effect change; (2) Strengthened partnerships with Maori health organisations for community benefit and to support measurable, evidence-based change and service delivery, particularly when Maori knowledge systems are viewed alongside a Western scientific approach; and (3) Intersectoral integration of health and social services to support provision of whanau-centred care and influence the social determinants of health and local environment. CONCLUSIONS: Maori health organisations are important actors in systems seeking to improve outcomes and eliminate health inequities. Support from funders and policy makers will be required to build on the strengths of these organisations and to overcome system challenges. To realise improved health outcomes for Maori, the value placed on whanau and community perspectives not only needs to be acknowledged in the implementation of health interventions, health and social policies and funding arrangements, but performance measures, service design and delivery must evolve to accommodate these perspectives in practice.

Implementation framework for chronic disease intervention effectiveness in Maori and other indigenous communities.

BACKGROUND: About 40% of all health burden in New Zealand is due to cancer, cardiovascular disease, and type 2 diabetes/obesity. Outcomes for Maori (indigenous people) are significantly worse than non-Maori; these inequities mirror those found in indigenous communities elsewhere. Evidence-based interventions with established efficacy may not be effective in indigenous communities without addressing specific implementation challenges. We present an implementation framework for interventions to prevent and treat chronic conditions for Maori and other indigenous communities. THEORETICAL FRAMEWORK: The He Pikinga Waiora Implementation Framework has indigenous self-determination at its core and consists of four elements: cultural-centeredness, community engagement, systems thinking, and integrated knowledge translation. All elements have conceptual fit with Kaupapa Maori aspirations (i.e., indigenous knowledge creation, theorizing, and methodology) and all have demonstrated evidence of positive implementation outcomes. APPLYING THE FRAMEWORK: A coding scheme derived from the Framework was applied to 13 studies of diabetes prevention in indigenous communities in Australia, Canada, New Zealand, and the United States from a systematic review. Cross-tabulations demonstrated that culture-centeredness (p = .008) and community engagement (p = .009) explained differences in diabetes outcomes and community engagement (p = .098) explained difference in blood pressure outcomes. IMPLICATIONS AND CONCLUSIONS: The He Pikinga Waiora Implementation Framework appears to be well suited to advance implementation science for indigenous communities in general and Maori in particular. The framework has promise as a policy and planning tool to evaluate and design effective interventions for chronic disease prevention in indigenous communities.

Engaging Maori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities.

PURPOSE: He Tangata Kei Tua, a relationship model for biobanks, was developed to facilitate best practice in addressing Maori ethical concerns by guiding culturally informed policy and practice for biobanks in relation to governance, operational, and community engagement activities. METHODS: The model is based on key issues of relevance to Maori that were identified as part of the Health Research Council of New Zealand-funded research project, Te Mata Ira (2012-2015). RESULTS: This project identified Maori perspectives on biobanking and genetic research, and along with tikanga Maori it developed cultural guidelines for ethical biobanking and genetic research involving biospecimens. The model draws on a foundation of matauranga (Indigenous knowledge) and tikanga Maori (Maori protocols and practices) and will be useful for biobanks, researchers, ethics committee members, and those who engage in consultation or advice about biobanking in local, regional, national, or international settings. CONCLUSION: This article describes the model and considers the policy and practice implications for biobanks seeking to address Maori ethical concerns. Although the model has focused on Maori aspirations in the New Zealand context, it provides a framework for considering cultural values in relation to other community or indigenous contexts.Genet Med 19 3, 345-351.

Key informant views on biobanking and genomic research with Maori.

The aim of the Te Mata Ira project was to explore Maori views on biobanking and genomic research, and to identify ways to address Maori concerns over the collection and use of human tissue. Key informant interviews and workshops were conducted with Maori to identify Maori views in relation to biobanking and genomic research; and, informed by these views, interviews and workshops were conducted with Maori and non-Maori key informants (Indigenous Advisory Panel (IAP) members and science communities) to explore key issues in relation to Maori participation in biobanking and genomic research. Maori key informants identified the following as key deliberations: (1) the tension for Maori between previous well-publicised negative experiences with genomic research and the potential value for whanau and communities as technologies develop, (2) protection of Maori rights and interest, (3) focus on Maori health priorities, (4) control of samples and data, (5) expectations of consultation and consent and (6) a desire for greater feedback and communication. Maori and non-Maori key informants highlighted the need to enhance levels of Maori participation in the governance of genomic research and biobanking initiatives, and acknowledged that only by increasing the level of transparency and accountability in relation to these activities will Maori communities feel that their whakapapa, rights and interests are being appropriately protected.

Living with economic hardship at the end of life.

BACKGROUND: Dying patients and their families often face an added burden of economic hardship, especially if they have become ill in the years before expected retirement. In Australia, patients can fall through the cracks of the national system of social protection because there are gaps in the access to and provision of healthcare and social assistance at the end of life. DESIGN: A mixed-method, prospective case study of individuals and their family carers, recruited from a specialist palliative care service in Melbourne, Australia, is presented. Participants were interviewed and followed up over 6 months and completed a 2-week diary of all services used and out-of-pocket costs. RESULTS: Mean out-of-pocket spending was $A369 per month (median: $A176, IQR: 356) ($A1=US$1=€0.73=£0.62; January 2011). Households with economic hardship were more likely to have a patient who was male, had ceased paid employment earlier than expected due to illness, reported a reduction in income due to illness, had less access to financial resources and used significantly fewer health-related community services. Three factors shaped the participants' experience of hardship: (1) the premature loss of employment capacity and income; (2) the affordability of care and; (3) a welfare system that could not accommodate their complex needs. CONCLUSIONS: These results demonstrate the multidimensional nature of the economic burden experienced at the end of life and imply the need for nuanced solutions to better support patients and their families. If terminally ill people wish to die at home and are to be supported to do so, policies must take account of the shift in economic burden from the health system onto families.

Loss of the extraembryonic ectoderm in Elf5 mutants leads to defects in embryonic patterning.

The extraembryonic ectoderm (ExE) is essential for mammalian placental formation and survival of the embryo in utero. We have obtained a mouse model lacking the ExE, by targeted deletion of the transcription factor Elf5. Although Elf5 mutant embryos implant and form an ectoplacental cone, no trophoblast stem (TS) cells can be derived, indicating that the absence of ExE is a result of the lack of TS cell maintenance. Embryos without ExE tissue are able to form the anterior visceral endoderm but fail to undergo gastrulation, demonstrating an essential role for the ExE in embryonic patterning during a defined window of development.

Suppression of beta-casein gene expression by inhibition of protein synthesis in mouse mammary epithelial cells is associated with stimulation of NF-kappaB activity and blockage of prolactin-Stat5 signaling.

The protein synthesis inhibitor cycloheximide (Chx) suppresses prolactin-induced beta-casein gene expression in the mammary epithelial cell line COMMA-D. As the mechanism underlying this effect is unclear, the effects of protein synthesis inhibitors on interactions of transcription factors with the beta-casein promoter were examined. Suppression of prolactin-induced beta-casein gene expression occurred in both COMMA-D cells and primary mammary cell cultures with as little as 2 h protein synthesis inhibition. This was associated with changes in transcription factors interacting at a response element in the proximal region of the rat beta-casein promoter. Inhibition of protein synthesis was associated with NF-kappaB binding at a site immediately 3' to the Stat5-binding site at position 97-89 of the beta-casein promoter, suppression of Stat5 DNA-binding activity, and inhibition of Stat5 tyrosine phosphorylation. Treatment with the NF-kappaB inhibitor parthenolide failed to restore prolactin responsiveness. These results show that protein synthesis inhibition is associated with both blockage of prolactin-Stat5 signaling and NF-kappaB binding to the beta-casein promoter, but that the latter is not necessary for the suppression of beta-casein expression.