Evaluating a shared care pathway intervention for people receiving chemotherapy to reduce post-treatment unplanned hospital presentations: a randomised controlled trial.

PURPOSE: The aim of this randomised controlled trial (RCT) was to explore whether a community nursing intervention for outpatients receiving systemic therapy reduced unplanned hospital presentations and improved physical and psychosocial health outcomes over the first three cycles of treatment compared to a control group receiving standard care. METHODS: The number of and reasons for unplanned presentations were obtained for 170 intervention and 176 control group adult patients with solid tumours starting outpatient chemotherapy. Poisson regression was used to compare the number of presentations between the intervention and control groups. Patients self-completed the Hospital Anxiety and Depression Scale, the Cancer Behavior Inventory and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire core 30 (EORTC QLQ-C30) at the start of the first four cycles. Linear regression techniques were used to compare quality of life outcomes. RESULTS: The reduction in unplanned presentations in the intervention group relative to the control group was 12% (95% CI, - 25%, 37%; P = 0.48). At the start of cycle 4, there was no difference in anxiety (difference = 0.47 (95% CI, - 0.28, 1.22; P = 0.22)), depression (difference = 0.57 (95% CI, - 0.18, 1.31; P = 0.13)) or EORTC QLQ-C30 summary score (difference = 0.16 (95% CI, - 2.67, 3.00; P = 0.91)). Scores for self-efficacy as measured by the Cancer Behavior Inventory were higher in the intervention group (difference = 4.3 (95% CI, 0.7, 7.9; P = 0.02)). CONCLUSION: This RCT did not demonstrate a benefit in reducing unplanned presentations to hospital. The trial identified improved cancer-based self-efficacy in patients receiving the intervention. TRIAL REGISTRATION: Registered at Australian and New Zealand Clinical Trials Registry: ACTRN12614001113640, registered 21/10/2014.

Investigating community-based care service factors delaying residential care home admission of community dwelling older adults and cost consequence.

OBJECTIVES: To examine factors contributing to delaying care home admission; and compare the rates of care home admission and cost consequence between two government subsidised programmes, Veterans' Affairs Community Nursing (VCN) and Home Care Package (HCP). METHODS: Our national, population-based retrospective cohort study and cost analysis used existing, de-identified veterans' claims databases (2010-19) and the Registry of Senior Australians Historical Cohort (2010-17), plus aggregate programme expenditure data. This involved 21,636 VCN clients (20,980 aged 65-100 years), and an age- and sex-matched HCP cohort (N = 20,980). RESULTS: Service factors associated with lower risk of care home admission in the VCN cohort were periodic (versus continuous) service delivery (HR 0.27 [95%CI, 0.24-0.31] for ≤18 months; HR 0.89 [95%CI, 0.84-0.95] for >18 months), and majority care delivered by registered nurses (versus personal care workers) (HR 0.86 [95%CI, 0.75-0.99] for ≤18 months; HR 0.91 [95%CI, 0.85-0.98] for >18 months). In the matched cohorts, the time to care home admission for VCN clients (median 28 months, IQR 14-42) was higher than for HCP clients (14, IQR 6-27). Within 5 years of service access, 57.6% (95%CI, 56.9-58.4) of HCP clients and 26.6% (95%CI, 26.0-27.2) of VCN clients had care home admission. The estimated cost saving for VCN recipients compared to HCP recipients over 5 years for relevant government providers was over A$1 billion. CONCLUSIONS: Compared to an HCP model, individuals receiving VCN services remained at home longer, with potentially significant cost savings. This new understanding suggests timely opportunity for many countries' efforts to enhance community-based care services.

Journey to Diagnosis of Young-Onset Dementia: A Qualitative Study of People with Young-Onset Dementia and their Family Caregivers in Australia.

OBJECTIVES: This study aims to explore the journey to dementia diagnosis and reaction to the diagnosis from the perspective of people with young-onset dementia living in the community from diverse areas in Australia (metropolitan, regional, rural) and their family caregivers. METHODS: Semi-structured interviews were conducted with community-dwelling people with early to moderate young-onset Alzheimer's disease (n = 8) or frontotemporal dementia (n = 5) and one person with both Alzheimer's disease and frontotemporal dementia, and family caregivers of community-dwelling people with young-onset Alzheimer's disease and/or frontotemporal dementia (n = 28). This study employed interpretive description. Thematic analysis was conducted for emergent themes, comparisons and interplay between themes. FINDINGS: The journey to the diagnosis is characterised as involving an extensive period of the gradual worsening of symptoms, drawn out investigations, and difficulties facing the prospect of a diagnosis of young-onset dementia. Participants with young-onset dementia struggled to manage their symptoms and the process of seeking a diagnosis was often slow due to difficulties during the course of their medical investigations and feeling reluctance to face the possibility of having dementia. Once participants finally received the diagnosis of young-onset dementia, participants with young-onset dementia and their family caregivers experienced feelings of devastation and shock, in some cases denial and avoidance, and even, confirmation and relief at having received a diagnosis. In some instances, participants experienced more than one of these reactions. There was a profound realisation by participants that a diagnosis of young-onset dementia had serious implications on their life and future. CONCLUSION: The journey to diagnosis was found to be a drawn-out process and receiving the diagnosis was a shock for both people with young-onset dementia and their family caregivers. The findings highlight the significance of the role healthcare professionals play in both the diagnostic and post-diagnostic journey, particularly in terms of supporting patients with young-onset dementia and their family caregivers.

Patient perceptions of a community-based intervention designed to provide support post administration of anti-cancer systemic treatments: A qualitative evaluation.

PURPOSE: This paper reports on patient participant experiences of a larger randomised controlled trial evaluating a shared-care pathway intervention designed to support outpatients at home during their first three cycles of systemic anti-cancer therapies delivered in two large tertiary hospitals in Sydney, Australia. This qualitative study explores the perspectives of patient participants who received the intervention, which involved targeted home visits by community nurses post treatment administration. METHODS: A qualitative inductive thematic analysis was used to examine data from semi-structured interviews with patients who received the intervention. RESULTS: Twenty-five patient participants were interviewed. We identified four themes: Stepping into the unknown; Impact of availability of health and social care support; Building confidence to manage self-care; Uncertainty, frailty and co-morbidities. Targeted support at home is seen to be effective and welcomed by patients as early stages of each treatment cycle can be extremely challenging, particularly for those who are elderly, frail or with co-morbidities, and for those with limited health and social support. CONCLUSION: Regular contact with community nursing services can, at least for some patients, support the development of patient self-efficacy in managing aspects of their own care. Some patients are sufficiently confident to self-manage some treatment side effects by treatment cycle four.

Lifetime Active Care: A qualitative study of long-term family carers of people with spinal cord injury in Australia.

This study reports the findings of a qualitative, grounded theory study which explored the experiences of partners and other long-term family carers living with and supporting loved ones with spinal cord injury. The study is exploratory in that little was previously known about the experience of long-term care-giving in this context in Australia. Most research in this area has focused on this experience during the first 5 years postinjury. This study focuses on the experiences of family carers beyond that 5-year period. The study aimed to explore the experience of partners and other long-term family carers of people with spinal cord injury, and illuminate their daily lives, interests, concerns and caring approaches in this context. Data collection included in-depth interviews, a focus group and an on-line, password-protected research blog for participant narrative reflections. Findings revealed that the experience of long-term caring is complex, all-encompassing and lifelong. This experience is conceptualised here as lifetime active care which always involves what we describe as protective, negotiated, surreptitious and strategic caring. These dimensions of caring are interdependent and deeply embedded in the daily, active support provided by long-term carers of people with spinal cord injury. We argue that carers in this context are involved in processes that have, in other contexts, been conceptualised as narrative reconstruction and also that the four dimensions of caring identified involve significant emotion work. The social processes of lifetime active care may shed light on the experiences of family carers in other long-term care contexts.

Nursing students' socialisation to emotion management during early clinical placement experiences: A qualitative study.

AIMS AND OBJECTIVES: To explore nursing students' subjective experience of emotions during first-year clinical placements, strategies used to manage their emotions and socialisation to emotion management. BACKGROUND: Emotion regulation is a key source of stress for early career and student nurses. Clinical placement experiences can elicit strong emotions in nursing students; however, they may be unprepared for the challenge of regulating their emotions in real-world practice. How nursing students learn to manage their emotions in the clinical setting, whether they receive support for this, and how they are socialised to manage their emotions during placements are not well known. DESIGN: An exploratory qualitative study. METHODS: Semi-structured interviews (n = 19) were conducted with first-year nursing students, exploring their experiences of emotion management during clinical placement. Interview transcripts were analysed using conventional qualitative content analysis. Reporting adheres to the COREQ Checklist. RESULTS: Interactions with patients and staff often elicited negative feelings. Structured guidance for emotion management by supervising staff was scarce. Students used informal self-reflection and interpretation to guide emotion management. CONCLUSIONS: In the absence of strategic socialisation and formal support for effective emotion management, students used emotional labour strategies that can negatively impact on well-being. A focus on adequately preparing nursing students for emotion work is a necessary component of classroom and clinical learning environments. Structured debriefing during clinical placements may provide a relevant context to discuss emotions arising during clinical work and to learn emotion management strategies. RELEVANCE TO CLINICAL PRACTICE: Emotional competence, a fundamental ability for registered nurses and students, supports personal health maintenance and strengthens professional practice. Students are exposed to clinical environments and interpersonal encounters that evoke strong emotions. They need situated learning strategies and formal support to develop knowledge and strengthen capability for emotion management, as this is essential for promoting professional development and patient care.

The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: a systematic integrative review.

BACKGROUND: Engagement of people with dementia who are living in the community, their family or carers, and healthcare professionals in decision-making related to their future care is an area yet to be explored in the literature. In particular, little is known about the factors most likely to underpin their engagement. OBJECTIVES: To identify key factors for the engagement of the person with dementia living in the community, as well as their family or carer and their healthcare professionals in decision-making processes related to future care. DESIGN: This is an integrative review guided by the PRISMA guidelines; the Mixed Methods Appraisal Tool was used to assess study quality. MEDLINE, PubMed, CINAHL, PsycINFO and Embase databases were searched for articles published from 2012 to 2018 that focused on people with dementia who live in the community, their family or carers, and community-based healthcare professionals. RESULTS: Twenty articles were included in the review, and six key factors were identified through thematic analysis: knowledge and understanding of dementia and decision-making for the future, valuing decision-making for the future, healthcare professionals' communication skills, timing of initiating conversations, relationship quality, and orientation to the future. CONCLUSION: This review identifies the six key factors required for the engagement of the three primary key stakeholders in decision-making about the future care of people with dementia. It also situates the factors within the complex context in which people with dementia, their family or carers, and healthcare professionals typically find themselves.

Convergent priorities and tensions: a qualitative study of the integration of complementary and alternative therapies with conventional cancer treatment.

PURPOSE: Demand for complementary and alternative medicine (CAM) is high among cancer patients. This, alongside growing evidence for the efficacy of some CAM therapies, is driving change within cancer centres, where evidence-based CAM therapies are increasingly provided alongside standard cancer treatments. In Australia, commitment to equitable access to healthcare is strong, and some cancer centres are now providing integrative services at no cost to the patient. This represents a significant shift in healthcare provision. This study aimed to examine health professional and patient dynamics in an integrated cancer service where CAM is provided at no cost to patients alongside standard cancer treatments. It specifically sought to understand what might drive or hinder further integration of CAM with standard treatment in the cancer context. METHODS: Qualitative interviews were undertaken with twenty key stakeholders-cancer patients, cancer nurses, and oncologists-who were delivering or receiving care in an Australian public hospital where acupuncture services are provided at no cost to patients alongside standard chemotherapy and radiation treatments. RESULTS: Findings point to key areas where the concerns and priorities of cancer patients, cancer nurses, and oncologists converge and diverge in ways that reflect core personal and professional interests regarding patient care needs, the evidence base for CAM efficacy and safety, and rising healthcare costs. CONCLUSIONS: Understanding points of convergence and divergence could assist clinicians and service providers in negotiating ways forward for integrative cancer services.

Emotional intelligence increases over time: A longitudinal study of Australian pre-registration nursing students.

BACKGROUND: Emotional intelligence (EI) has been associated with positive outcomes for nursing students. Higher EI is associated with personal wellbeing and stress management, higher academic performance, stronger nursing leadership and practice performance, and greater patient safety. While there is an increasing body of evidence on nursing students' EI, there is minimal evidence on EI over time during pre-registration programs. OBJECTIVES: To measure EI in pre-registration nursing students from program commencement to conclusion to ascertain EI over time and examine the relationship between EI and academic performance. DESIGN AND SETTING: Longitudinal repeated measures study between March 2010-February 2013 at a metropolitan university in Australia. PARTICIPANTS: 111 nursing students (74.8% female) contributed data on at least two occasions. Participants were enrolled in a pre-registration Master of Nursing degree. Half the cohort (55.0%) comprised Graduate Entry students who completed the course in two years full time. The other 45% were enrolled in an undergraduate degree in arts, science or health science, combined with the same pre-registration Master of Nursing Degree. These students completed their Combined Degree program in four years full time. Participants had a mean age of 24.7years (SD=7.36). METHODS: EI was measured for commencing students (T1) using the Assessing Emotions Scale (AES), then a further three times: end of first year (T2; 9 months follow up); beginning of second year (12 months follow up; T3) and end of the program (T4; 24/36 months follow up). RESULTS: Students' EI was found to increase across the program; one subscale of EI (managing others' emotions) was related to higher academic performance; and there was a significant increase in the Utilising Emotions subscale scores over time. CONCLUSIONS: Pre-registration nurse education contributes to strengthening students' EI over time. Specific EI education scaffolded throughout programs is recommended in pre-registration curricula.

'Shadowing' as a management strategy for chemotherapy outpatient primary support persons.

Despite growing numbers of patients with cancer receiving chemotherapy in outpatient settings and the corresponding increase in care demands on family and close friends, little is known about the experiences of those informal carers supporting people with cancer during their chemotherapy trajectories. Using an interpretivist theoretical framework, this study explored the experiences of primary support persons of chemotherapy outpatients through in-depth interviews with 17 participants nominated as their primary support persons by people receiving chemotherapy at a large tertiary hospital in Australia. The study demonstrates that primary support persons of chemotherapy outpatients face distinct challenges, being at the frontline of treatment and managing side effects with minimal support at home. This role involves sensitive provision of complex medical and social care in circumstances that profoundly challenge the everyday worlds of both patient and carer. From the moment of diagnosis, informal carers in this context face the 'double whammy' of needing to 'manage' the cancer diagnosis experience as well as the chemotherapy trajectory experience. This study points to the significant level of responsibility that primary support persons take on, and the extent to which patients and clinicians rely on their support and management skills. It also points, however, to the lack of recognition they receive for assuming this role, and their sense of frustration in the face of this invisibility. The conceptualisation of the informal carer role as a 'shadowing' role explicitly represents the protective, vigilant, but almost invisible, support role described by the participants in this study.

The Pregnant Patient: Assessment and Perioperative Management.

Pathologic changes can occur during pregnancy requiring diagnostic tests and procedures. A preoperative assessment and perioperative planning are essential. Normal physiologic changes include increased cardiac output and decreased functional residual capacity. Perioperative care should follow American Congress of Obstetricians and Gynecologists guidelines. Anesthetic concerns include desaturation during periods of apnea, aspiration, difficult intubation, friable nasal tissue, decreased MAC, and hypotension and/or decreased uterine perfusion from the uterus. Anesthesia and medications must be individualized and given only as needed. Limit exposure to multiple drugs and monitor for fetal wellbeing and premature labor per consultation and guidelines.

Community Nursing Care of Chinese-Australian Cancer Patients: A Qualitative Study.

BACKGROUND: Providing quality care and support to cancer patients from minority cultures can challenge community nurses when language barriers and cultural complexities intersect with the need for complex care. OBJECTIVES: This article reports on a qualitative study that explores interactions between community nurses and Chinese-Australian cancer patients. METHODS: The research method focused on particular nurse-patient encounters and involved preencounter and postencounter interviews with the nurse, postencounter interviews with the patient, and observation of the encounters. Participants included community nurses, Chinese cancer patients being cared for at home, and their carers if present. RESULTS: Four themes were conceptualized: (1) the impact of language barriers on nurse-patient interactions, (2) patient understandings of the scope and objectives of healthcare services, (3) cultural complexities and sensitivities, and (4) valued care and support. The study demonstrates that, although many nurses do provide comprehensive, culturally competent care, language barriers can lead to task-oriented rather than comprehensive approaches, and other cultural complexities do have an impact on patient experiences and on the quality of nurse-patient interactions. Nevertheless, most patient participants experienced a feeling of security as a result of regular contact with a community nursing service. CONCLUSION: Cancer patients with complex care needs but limited English proficiency require support to negotiate complicated community services networks. Culturally competent community nurses can provide this support. IMPLICATIONS FOR PRACTICE: The study highlights the need for continuing cultural competence education for community nurses and the importance of careful discharge planning to ensure continuity of care for this vulnerable patient group.

The work of living with a rare cancer: multiple myeloma.

AIM: To report findings from a qualitative study of the experiences of long-term survivors of multiple myeloma. BACKGROUND: Multiple Myeloma is a malignant disease of the bone marrow. Until recently, it was rapidly fatal. Although it remains incurable, people diagnosed with it are living longer on average, largely due to new treatments, some of which have onerous side effects. DESIGN: Prospective descriptive study. METHOD: A series of 47 in-depth interviews were conducted at 6-12 month intervals over 18 months in 2008-2010 with 10 long-term survivors of myeloma and their primary support person. Interviews were analysed using the constant comparative method (Grounded Theory). FINDINGS: To adapt to the effects of both the disease and ongoing medical treatments, participants undertook extensive 'illness work'. Most of this work fell into two broad categories. Risk work aimed to mitigate risks to the well-being of both the person with myeloma and his/her carer. Emotion work aimed to manage the feelings of self and others in a protracted cycle of remission and relapse. CONCLUSION: The experience of myeloma is increasingly characterized by issues associated with chronic disease and 'survivorship'. It is important for nurses working with people with myeloma to understand the overwhelming nature of illness work in this context. Nurses can put in place supportive measures to address the two main 'drivers' of this work: constant risk to well-being of survivors (including carers) and the recurrent need to manage emotions in social interactions.

A community-of-care: the integration of a palliative approach within residential aged care facilities in Australia.

In developed countries, residential aged care facilities (RACFs) are increasingly becoming the place of care and site of death for older people with complex chronic illnesses. Consequently, it is becoming ever more relevant for these facilities to provide appropriate complex, as well as end-of-life care for this growing group of people. Evidence-based guidelines for providing a 'palliative approach' were developed and introduced in Australia in 2004, with the emphasis on improving symptom control earlier in the disease trajectory. The aim of the study reported here was to explore the extent to which a palliative approach was being used in the organisation and provision of care for older people with complex needs living in mixed-level (a combination of low- and high-level care) RACFs. This paper primarily reports on the qualitative findings. Two residential aged care organisations, one in rural New South Wales and the other in Sydney, Australia, participated. Data were collected over a 9-month period from May until December 2008. Residents, family members and aged care staff were interviewed. Thematic analysis of participant interviews shows that while the various elements of a palliative approach are incorporated into the care of high-level care residents, the discourse itself is not used. In this paper, we argue for a new conceptualisation of care for people in mixed-level care facilities: a community-of-care, in which a palliative approach is one of several components of the care provided. The findings illuminate aged care staff experiences of providing care to high-level care residents. They also provide valuable insights into high-level care residents' perceptions of their health, care provided and the way in which they foresee their care being provided in future. These findings will be important for informing clinical practice, research and policy in these settings.

A learning and teaching resource on patient self-management of chronic pain.

OBJECTIVE: To develop, pilot test, and evaluate an instructional module on patient self-management for undergraduate pharmacy students in an Australian university. DESIGN: Learning outcomes and associated content and assessment tasks were developed, featuring lecture and readings, in-class discussions, and online delivery of in-depth interviews with patients who were living with chronic pain. ASSESSMENT: Students completed a premodule and postmodule questionnaire and were further assessed by multiple-choice questions following completion of the module and again at the end of the semester. Positive changes were identified in the students' discourse surrounding patient self-management of chronic pain. Responses to multiple-choice questions showed that knowledge was sustained over the course of the semester. CONCLUSIONS: Completion of a comprehensive module on patient self-management increased undergraduate pharmacy students' understanding and knowledge of patients experiencing chronic pain. The module could be implemented across other healthcare disciplines.

Co-hydrolysis of hydrothermal and dilute acid pretreated populus slurries to support development of a high-throughput pretreatment system.

BACKGROUND: The BioEnergy Science Center (BESC) developed a high-throughput screening method to rapidly identify low-recalcitrance biomass variants. Because the customary separation and analysis of liquid and solids between pretreatment and enzymatic hydrolysis used in conventional analyses is slow, labor-intensive and very difficult to automate, a streamlined approach we term 'co-hydrolysis' was developed. In this method, the solids and liquid in the pretreated biomass slurry are not separated, but instead hydrolysis is performed by adding enzymes to the whole pretreated slurry. The effects of pretreatment method, severity and solids loading on co-hydrolysis performance were investigated. RESULTS: For hydrothermal pretreatment at solids concentrations of 0.5 to 2%, high enzyme protein loadings of about 100 mg/g of substrate (glucan plus xylan) in the original poplar wood achieved glucose and xylose yields for co-hydrolysis that were comparable with those for washed solids. In addition, although poplar wood sugar yields from co-hydrolysis at 2% solids concentrations fell short of those from hydrolysis of washed solids after dilute sulfuric acid pretreatment even at high enzyme loadings, pretreatment at 0.5% solids concentrations resulted in similar yields for all but the lowest enzyme loading. CONCLUSIONS: Overall, the influence of severity on susceptibility of pretreated substrates to enzymatic hydrolysis was clearly discernable, showing co-hydrolysis to be a viable approach for identifying plant-pretreatment-enzyme combinations with substantial advantages for sugar production.