Illness perceptions of people living with chronic heart failure and limited community disease management.

AIM: To explore the cognitive representations and emotional responses to living with chronic heart failure of people receiving limited community disease management. BACKGROUND: Individuals living with heart failure face self-care and emotional challenges due to the overwhelming nature of adapting to lifestyle changes, particularly in subtropical areas. DESIGN: Qualitative descriptive. We applied Leventhal's Common Sense Model of Self-Regulation as the framework for interviews and analyses. METHODS: Twenty patients with chronic heart failure were interviewed during a hospital admission for exacerbation of their condition in a tertiary hospital in Thailand. RESULTS: Analysis of the components of Leventhal's model of cognitive representations of illness revealed two themes relating to Illness Identity: (1) lack of knowledge of the diagnosis and how to recognise symptoms of the disease, and (2) recognition of symptoms of an exacerbation of CHF was based on past experience rather than education. These resulted in delays responding to cardiac instability and confusion about the intent of treatment. Participants recognised the chronicity of their disease but experienced it as an unrelenting cycle of relative stability and hospitalisations. Perceived Controllability was low. Two themes were: (1) Low perceived trust in the efficacy of medical treatment and lifestyle changes, and (2) Low perceived trust in their ability to comply with recommended lifestyle changes. The Consequences were significant emotional distress and high burden of disease. The two themes of emotional responses were (1) Frustration and hopelessness with the uncertainty and unpredictability of the disease, and (2) Sense of loss of independence, functional capacity and participation in life's activities. CONCLUSION: Chronically ill patients need support to understand their illness and make better treatment and lifestyle decisions. Improving patients' self-efficacy to manage treatment and symptom fluctuations has the potential to improve their mental well-being and minimise the impact of their condition on suffering and participation in employment and community. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Leventhal's Common Sense Model of Self-Regulation can be used to examine cognitive and emotional elements of illness perceptions, which link to individuals' ability to make informed decisions about disease management and influence health behaviours. Understanding illness perceptions underpins strategies for enhancing and sustaining self-management behaviours. IMPACT: The study findings accentuate the need to establish long-term condition support programs in low-middle income countries where the burden of heart failure is increasing exponentially. REPORTING METHOD: The Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline was used to explicitly and comprehensively report our qualitative research. PATIENT OR PUBLIC CONTRIBUTION: Patients contributed to the conduct of the study by participating in the data collection via face-to-face interviews.

Nurses' motivations and desired learning outcomes of postgraduate critical care studies: A descriptive exploratory study.

BACKGROUND: Education guidelines and professional practice standards inform the design of postgraduate critical care nursing curricula to develop safety and quality competencies for high-quality care in complex environments. Alignment between nurses' motivations for undertaking postgraduate critical care education, and intended course learning outcomes, may impact students' success and satisfaction with programs. OBJECTIVES: The objectives of this study were to explore nurses' motivations and desired learning outcomes on commencement of a postgraduate critical care course and determine how these align with safety and quality professional attributes. METHODS: In this exploratory descriptive study, qualitative data were extracted from survey responses of four cohorts of students enrolled in a graduate certificate-level critical care course between 2013 and 2016 (N = 390, 93%), at one Australian university. Summative qualitative content analysis was used to code and quantify textual content followed by synthesis to identify themes and subthemes. RESULTS: Five themes of motivations were identified: (i) Knowledge development; (ii) Skill development, (iii) Personal outcomes, (iv) Personal professional behaviours, and (v) Interpersonal professional behaviours. Most frequently, students' motivations and desired learning outcomes included 'Understanding' (329 participants [84%], 652 references), 'Development of technical skills' (241 participants [62%], 384 references), 'Development of confidence' (178 participants [46%], 220 references), and 'Career progression' (149 participants [38%], 168 references). Less frequent were motivations related to safety and quality competencies including teamwork, communication, reflective practice, and research skills. CONCLUSION: Findings suggest students' motivations to undertake postgraduate studies most often related to acquisition of new knowledge and technical skills. Desired skills and behaviours were consistent with many, but not all, of the key course outcomes and attributes specified by health professional education guidelines and nurses' professional practice standards. Understanding the differences between students' motivations and desired safety- and quality-related course learning outcomes informs course orientation, teaching activities, and student support to optimise achievement of essential learning outcomes.

Low dose mobility and functional status outcomes in hospitalized older general medicine patients.

Emerging evidence suggests hospitalized older adults should walk at least 20-minutes daily to minimize functional decline. A single-institution case study conducted in a tertiary-referral centre in Melbourne, Australia, aimed to examine functional change and describe characteristics of older patients' in-hospital mobility. From 526 older patients vulnerable to functional decline, a sample of 41 patients (Mean age = 83.6, SD = 6.1 years) participated in 6-hour naturalistic observations. Functional change was measured at 2-weeks preadmission, admission and discharge with the revised Measurement System of Functional Autonomy (SMAF). Nearly 25% (n = 10) of observed patients functionally declined between preadmission and discharge and five patients died (12.2%). Thirty-two patients (78%) mobilized in 133 episodes accounting for 3.1% of the 246-hours observed. A daily walking-exercise dose equivalent to 20-min was associated with less functional decline in older adults with moderate to high walking capability supporting the effectiveness of this daily walking-exercise dose in minimizing functional decline.

Associations of person-related, environment-related and communication-related factors on medication errors in public and private hospitals: a retrospective clinical audit.

BACKGROUND: Efforts to ensure safe and optimal medication management are crucial in reducing the prevalence of medication errors. The aim of this study was to determine the associations of person-related, environment-related and communication-related factors on the severity of medication errors occurring in two health services. METHODS: A retrospective clinical audit of medication errors was undertaken over an 18-month period at two Australian health services comprising 16 hospitals. Descriptive statistical analysis, and univariate and multivariable regression analysis were undertaken. RESULTS: There were 11,540 medication errors reported to the online facility of both health services. Medication errors caused by doctors (Odds Ratio (OR) 0.690, 95% CI 0.618-0.771), or by pharmacists (OR 0.327, 95% CI 0.267-0.401), or by patients or families (OR 0.641, 95% CI 0.472-0.870) compared to those caused by nurses or midwives were significantly associated with reduced odds of possibly or probably harmful medication errors. The presence of double-checking of medication orders compared to single-checking (OR 0.905, 95% CI 0.826-0.991) was significantly associated with reduced odds of possibly or probably harmful medication errors. The presence of electronic systems for prescribing (OR 0.580, 95% CI 0.480-0.705) and dispensing (OR 0.350, 95% CI 0.199-0.618) were significantly associated with reduced odds of possibly or probably harmful medication errors compared to the absence of these systems. Conversely, insufficient counselling of patients (OR 3.511, 95% CI 2.512-4.908), movement across transitions of care (OR 1.461, 95% CI 1.190-1.793), presence of interruptions (OR 1.432, 95% CI 1.012-2.027), presence of covering personnel (OR 1.490, 95% 1.113-1.995), misread or unread orders (OR 2.411, 95% CI 2.162-2.690), informal bedside conversations (OR 1.221, 95% CI 1.085-1.373), and problems with clinical handovers (OR 1.559, 95% CI 1.136-2.139) were associated with increased odds of medication errors causing possible or probable harm. Patients or families were involved in the detection of 1100 (9.5%) medication errors. CONCLUSIONS: Patients and families need to be engaged in discussions about medications, and health professionals need to provide teachable opportunities during bedside conversations, admission and discharge consultations, and medication administration activities. Patient counselling needs to be more targeted in effort to reduce medication errors associated with possible or probable harm.

Evaluation of the validity and reliability of the Nurses' Responsibility in Healthcare Quality Questionnaire: An instrument design study.

Nurses' awareness and acceptance of their professional responsibilities across the full breadth of safety and quality-related practices and behaviors are critical for high quality healthcare delivery. The purpose of this study was to develop and psychometrically test a new instrument to measure nurses' perceptions of their responsibilities related to healthcare quality. Participants were registered nurses, enrolled in a postgraduate program at an Australian university, who completed the Likert scale instrument with items developed from nurses' professional practice standards. Steps of pilot testing, item reduction, and confirmatory factor analysis resulted in a five-subscale, 55-item instrument with acceptable goodness-of-fit indices and good internal consistency reliability. Test-retest reliability demonstrated acceptable temporal stability. The Nurses Responsibilities in Healthcare Quality Questionnaire demonstrated acceptable validity and reliability. The instrument may assist education providers and health service managers to identify gaps between nurses' beliefs and professional role expectations, and evaluate the impact of educational and clinical initiatives designed to develop nurses' knowledge, skills, and attitudes related to healthcare quality.

End-of-life care and intensive care unit clinician involvement in a private acute care hospital: A retrospective descriptive medical record audit.

INTRODUCTION: More Australians die in the hospital than in any other setting. This study aimed to (i) evaluate the quality of end-of-life (EOL) care in the hospital against an Australian National Standard, (ii) describe the characteristics of intensive care unit (ICU) clinician involvement in EOL care, and (iii) explore the demographic and clinical factors associated with quality of EOL care. METHOD: A retrospective descriptive medical record audit was conducted on 297 adult inpatients who died in 2017 in a private acute care hospital in Melbourne, Australia. Data collected related to 20 'Processes of Care', considered to contribute to the quality of EOL care. The decedent sample was separated into three cohorts as per ICU clinician involvement. RESULTS: The median age of the sample was 81 (25th-75th percentile = 72-88) years. The median tally for EOL care quality was 16 (25th-75th percentile = 13-17) of 20 care processes. ICU clinicians were involved in 65.7% (n = 195) of cases; however, contact with the ICU outreach team or an ICU admission during the final inpatient stay was negatively associated with quality of EOL care (coefficient = -1.51 and -2.07, respectively). Longer length of stay was positively associated with EOL care (coefficient = .05). Specialist palliative care was involved in 53% of cases, but this was less likely for those admitted to the ICU (p < .001). Evidence of social support, bereavement follow-up, and religious support were low across all cohorts. CONCLUSION: Statistically significant differences in the quality of EOL care and a negative association between ICU involvement and EOL care quality suggest opportunities for ICU outreach clinicians to facilitate discussion of care goals and the appropriateness of ICU admission. Advocating for inclusion of specialist palliative care and nonclinical support personnel in EOL care has merit. Future research is necessary to investigate the relationship between ICU intervention and EOL care quality.

Analgesic Outcomes in a Danish Acute Care Hospital Following Electronic Prescribing and Analgesic Self-Administration.

BACKGROUND: Despite the long-term consequences of poorly controlled postoperative pain, inadequate pain control remains a problem. AIMS: To improve the quality of postoperative pain management, the study site, an acute care hospital in Denmark, introduced electronic prescribing with standard order-sets, and allowed patients to self-administer analgesia. This study aimed to describe analgesic prescribing, prescriptions for multimodal analgesia, analgesic administration, and patients' pain experience, in this context. DESIGN: Point-prevalence survey. SETTINGS: One Danish regional hospital. PARTICIPANTS: Consecutive sample of 286 surgical inpatients comprising 65 orthopaedic, 41 gynaecological, 57 urology and 123 gastrointestinal patients. METHODS: We evaluated the quality of postoperative pain management on four postoperative surgical wards using: (1) the Revised American Pain Society Patient Outcome Questionnaire; and (2) patient chart audit. RESULTS: Overall, 89.2% of patients were prescribed a fixed analgesic and 71.7% were prescribed fixed analgesics in multimodal combination. Patterns of multimodal prescribing and administration varied significantly across surgical groups. Patients received 87.7% of available fixed prescriptions and 22.5% of available analgesics prescribed 'as needed'. However, patients' worst pain intensity was high (mean = 5.8/10, SD = 2) and 73.4% reported moderate-to-severe worst pain during the previous 24-hours. Patients who self-administered medications used significantly more fixed-schedule paracetamol (p = .018), non-steroidal anti-inflammatory drugs (p = .001), weak (p = .035) and strong (p < .001) opioids. CONCLUSIONS: The availability of multimodal analgesia was high following the introduction of electronic prescribing. However, gaps remain in the administration of both fixed and 'as needed' analgesics for postoperative patients. Findings suggested that allowing patients to self-administer analgesia may increase compliance with fixed schedule prescriptions.

Methods used to examine technology in relation to the quality of nursing work in acute care: A systematic integrative review.

AIMS AND OBJECTIVES: To systematically locate, assess and synthesise research to describe methods used to examine technology in relation to the quality of nursing work in acute care. Specific objectives were to (a) describe the types of nursing work examined; (b) describe methods used to examine technology in nursing work; (c) identify outcomes used to evaluate technology in relation to the quality of nursing work; and (d) make recommendations for future research. BACKGROUND: New technologies can offer numerous benefits to nurses; however, it is challenging to evaluate health information technologies in relation to the quality of nurses' complex day-to-day work. DESIGN: A systematic integrative review using a five-step process. METHODS: Five databases were searched using search terms "nurs*," "workload," "task," "time." Data screening, extraction and interpretation were conducted independently by at least two authors and agreement verified by discussion. Data extraction followed PRISMA guidelines. RESULTS: Of the 41 studies included, most (87.8%, n = 36) examined physical dimensions of nursing work; 31.7% (n = 13) organisational dimensions; 17.1% (n = 8) cognitive dimensions; and only 12.2% (n = 5) emotional dimensions. More than half (58.5%, n = 24) examined only one dimension; one captured all four dimensions. Most frequently examined technologies were electronic medical/health records (36.5%) and electronic medication management (19.5%). Direct observation (58.8%, n = 28) and multiple methods (19.5%, n = 8) were the most common methods; nurse tasks, frequency, duration and time distribution were variables most often measured. CONCLUSIONS: Examinations of technology in nursing work often failed to capture the multiple dimensions of this work nor did they recognise the complexity of day-to-day nursing work in acute care. There is a paucity of literature to inform how and what technology should be measured in relation to the quality of nursing care. RELEVANCE TO CLINICAL PRACTICE: The outcomes inform useful research methods to comprehensively examine technology to enhance the quality of complex nursing work.

Resuscitation status and characteristics and outcomes of patients transferred from subacute care to acute care hospitals: A multi-site prospective cohort study.

AIMS AND OBJECTIVES: To examine the relationship between resuscitation status and (i) patient characteristics; (ii) transfer characteristics; and (iii) patient outcomes following an emergency inter-hospital transfer from a subacute to an acute care hospital. BACKGROUND: Patients who experience emergency inter-hospital transfers from subacute to acute care hospitals have high rates of acute care readmission (81%) and in-hospital mortality (15%). DESIGN: This prospective, exploratory cohort study was a subanalysis of data from a larger case-time-control study in five Health Services in Victoria, Australia. There were 603 transfers in 557 patients between August 2015 and October 2016. The study was conducted in accordance with the STrengthening the Reporting of OBservational studies in Epidemiology guidelines. METHODS: Data were extracted by medical record audit. Three resuscitation categories (full resuscitation; limitation of medical treatment (LOMT) orders; or not-for-cardiopulmonary resuscitation (CPR) orders) were compared using chi-square or Kruskal-Wallis tests. Stratified multivariable proportional hazard Cox regression models were used to account for health service clustering effect. FINDINGS: Resuscitation status was 63.5% full resuscitation; 23.1% LOMT order; and 13.4% not-for-CPR. Compared to patients for full resuscitation, patients with not-for-CPR or LOMT orders were more likely to have rapid response team calls during acute care readmission or to die during hospitalisation. Patients who were not-for-CPR were less likely to be readmitted to acute care and more likely to return to subacute care. CONCLUSIONS: Two-thirds of patients in subacute care who experienced an emergency inter-hospital transfer were for full resuscitation. Although the proportion of patients with LOMT and not-for-CPR orders increased after transfer, there were deficiencies in the documentation of resuscitation status and planning for clinical deterioration for subacute care patients. RELEVANCE TO CLINICAL PRACTICE: As many subacute care patients experience clinical deterioration, patient preferences for care need to be discussed and documented early in the subacute care admission.

Caring for the person with cancer and the role of digital technology in supporting carers.

PURPOSE: Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers' needs. METHODS: Focus groups and semi-structured interviews were conducted with 45 carers. Carers discussed supports and services they used to address their needs, barriers to accessing support, and how digital technology could assist in meeting their needs. RESULTS: Carers used informal support such as friends and family and formal support including respite and community groups during the caring period. Barriers to accessing support included reluctance to seek external help, sensitivities associated with prioritising carers' needs over patients' needs, and the adequacy of information received. Technology was reported to have the potential to allow carers' privacy to seek support; however, carers' attitudes towards technology differed. CONCLUSIONS: Carers require support during the caring period to help balance their own needs with the needs of the person receiving cancer treatment. Digital technology may provide an opportunity to deliver support to carers; however, further research is needed to assess the appropriateness of these interventions to inform improved health outcomes for this vulnerable group.

Usability and feasibility of multimedia interventions for engaging patients in their care in the context of acute recovery: A narrative review.

PURPOSE: The purpose of this narrative review was to examine the usability and feasibility of multimedia intervention as a platform to enable patient participation in the context of acute recovery and to discover what outcomes have been measured. DATA SOURCES: A narrative review of primary research articles identified through a search of four electronic databases (MEDLINE, CINAHL, EMBASE and PsycInfo) identified peer-reviewed research evidence published in English language with no limitation placed on time period or publication type. Two authors independently assessed articles for inclusion. From the 277 articles identified through the search, 10 papers reporting the outcomes of seven studies were included in this review. REVIEW METHODS: Articles were independently assessed for quality and relevance by two authors. The most appropriate method for data synthesis for this review was a narrative synthesis. RESULTS: From the narrative synthesis of study outcomes, two findings emerged as follows: (a) multimedia interventions are feasible and usable in the context of acute care, and (b) multimedia interventions can improve patients' perception of care-related knowledge. Identified gaps included a lack of evidence in relation to the effect of interventions on enhancing patients' ability to participate in their care and the impact on patients' health-related outcomes. CONCLUSIONS: In conclusion, there is some evidence of the feasibility and usability of multimedia interventions in acute care. That is, patients can use these types of platforms in this context and are satisfied with doing so. Multimedia platforms have a role in the delivery of information for patients during acute recovery; however, the effectiveness of these platforms to engage and enhance patients' capability to participate in their recovery and the impact on outcomes needs to be rigorously evaluated.

Characteristics and outcomes of emergency interhospital transfers from subacute to acute care for clinical deterioration.

OBJECTIVE: To describe characteristics and outcomes of emergency interhospital transfers from subacute to acute hospital care and develop an internally validated predictive model to identify features associated with high risk of emergency interhospital transfer. DESIGN: Prospective case-time-control study. SETTING: Acute and subacute healthcare facilities from five health services in Victoria, Australia. PARTICIPANTS: Cases were patients with an emergency interhospital transfer from subacute to acute hospital care. For every case, two inpatients from the same subacute care ward on the same day of emergency transfer were randomly selected as controls. Admission episode was the unit of measurement and data were collected prospectively. MAIN OUTCOME MEASURES: Patient and admission characteristics, transfer characteristics and outcomes (cases), serious adverse events and mortality. RESULTS: Data were collected for 603 transfers in 557 patients and 1160 control patients. Cases were significantly more likely to be male, born in a non-English speaking country, have lower functional independence, more frequent vital sign assessments and experience a serious adverse event during first acute care or subacute care admissions. When adjusted for health service, cases had significantly higher inpatient mortality, were more likely to have unplanned intensive care unit admissions and rapid response team calls during their entire hospital admission. CONCLUSIONS: Patients who require an emergency interhospital transfer from subacute to acute hospital care have hospital admission rates and in-hospital mortality. Clinical instability during the first acute care admission (serious adverse events or increased surveillance) may prompt reassessment of patient suitability for movement to a separate subacute care hospital.

Perceptions of patient participation in symptom management: A qualitative study with cancer patients, doctors, and nurses.

AIM: To explore people with cancer, doctors', and nurses' understanding of and attitudes toward, patient participation in symptom management. BACKGROUND: In health service policies worldwide, patients are recognized as the important members of the treatment care team. The concept of patient participation can be understood from a variety of perspectives, reflecting the limited conceptual clarity and poor congruence between patients' and clinicians' understanding. DESIGN: A qualitative study conducted using individual interviews. METHODS: Forty one people with cancer, five doctors, and seven nurses were recruited from two oncological medical units of a cancer specialized hospital in Shanghai, China between November 2013 - March 2014. Individual interviews were semi-structured. Data were analysed through framework analysis. RESULTS: Patient participation was perceived as a mutual interaction requiring contribution from both patients and clinicians. Three main themes were uncovered: (a) information exchange is the key to patient participation; (b) negotiated decision-making can be achieved in various ways; and (c) patients' self-management can be a form of patient participation. Patient participation was recognized by both patients and clinicians as an important component of cancer care, however concerns relating to patients' limited knowledge and their ability to negotiate treatment decisions existed among most of the patients, doctors, and nurses. CONCLUSION: This study identified the wide range of activities where patient participation can occur in the context of cancer care. Positive recognition of patients' roles in treatment and care should be advocated among both patients and clinicians to facilitate patients' participation in their own care and enhance clinicians' skills in involving patients.

Nurses' decision-making, practices and perceptions of patient involvement in medication administration in an acute hospital setting.

AIMS: To describe nurses' decision-making, practices and perceptions of patient involvement in medication administration in acute hospital settings. BACKGROUND: Medication errors cause unintended harm to patients. Nurses have a major role in ensuring patient safety in medication administration practices in hospital settings. Investigating nurses' medication administration decision-making and practices and their perceptions of patient involvement, may assist in developing interventions by revealing how and when to involve patients during medication administration in hospital. DESIGN: A descriptive exploratory study design. METHODS: Twenty nurses were recruited from two surgical and two medical wards of a major metropolitan hospital in Australia. Each nurse was observed for 4 hr, then interviewed after the observation. Data were collected over six months in 2015. Observations were captured on an electronic case report form; interviews were audio-recorded and transcribed verbatim. Data were analysed using descriptive statistics and content and thematic analysis. RESULTS: Ninety-five medication administration episodes, of between two and eight episodes per nurse, were observed. A total of 56 interruptions occurred with 26 of the interruptions being medication related. Four major themes emerged from the interviews: dealing with uncertainty; facilitating, framing and filtering information; managing interruptions and knowing and involving patients. CONCLUSION: Nurses work in complex adaptive systems that change moment by moment. Acknowledging and understanding the cognitive workload and complex interactions are necessary to improve patient safety and reduce errors during medication administration. Knowing and involving the patient is an important part of a nurses' medication administration safety strategies.

The dose of physical activity to minimise functional decline in older general medical patients receiving 24-hr acute care: A systematic scoping review.

AIMS AND OBJECTIVES: To identify evidence for a recommended and feasible activity dose to minimise functional decline in older hospitalised general medical patients. BACKGROUND: Quality 24-hr care of older patients involves balancing activity to minimise functional decline, with rest to aid recovery. However, there is limited guidance regarding an optimal type and dose of activity to minimise functional decline in hospitalised elders receiving acute medical care. DESIGN: A systematic search and scoping review of the literature were conducted following Joanna Briggs methodological guidance. METHODS: The results were reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Statement. Study bias was determined using the Joanna Briggs Institute Critical Appraisal Tools. RESULTS: Fifteen primary studies of variable design, rigour and potential for bias were included. Study contexts were general medical wards (n = 11, 73.3%), Acute care of the elderly unit (n = 3, 20%) and a nursing unit (n = 1, 6.7%) located in tertiary referral acute hospitals. Most participants were aged 75-84 years (n = 10, 66%), had variable medical diagnoses and samples were either physically capable (n = 4, 26.7%) of limited physical capability (n = 1, 6.7%) or of mixed capability to mobilise independently (n = 10, 66.7%). Walking at least twice a day for approximately 20 min in total appeared to be associated with less functional decline in older patients of variable physical capabilities, and the overall efficacy of twice-daily exercise to reduce functional decline was supported. CONCLUSION: The evidence tentatively supported walking for hospitalised elders, irrespective of physical capability, and based on one RCT, suggested likely benefits of graduated exercise in dependent elders. Insufficient evidence limits prescription of optimal doses of physical activity to minimise functional decline. RELEVANCE TO CLINICAL PRACTICE: This review could provide evidence for nurses to promote function in older patients by specifying a dose of physical activity to be undertaken in hospital.

Feasibility, useability and acceptability of technology-based interventions for informal cancer carers: a systematic review.

BACKGROUND: Carers looking after someone with cancer often experience negative impacts on their own health. M-health interventions have been designed to provide information and support to patients and their carers. However, the effectiveness of technology-based interventions for carers is less well understood. The objectives were to assess the feasibility, useability and acceptability of technology-based interventions among carers of people living with cancer. METHODS: A systematic search of the CINAHL, MEDLINE and PSYCINFO databases was performed using terms related to web-based interventions and smartphone applications, carers and cancer. Studies were included if a randomised controlled trial or pilot study was conducted, focused on adult carers looking after another adult with cancer and were published between January 2007-June 2017. Articles were excluded if they reported qualitative results only or were evaluating existing websites and applications. Feasibility was measured by attrition, recruitment rates and frequency of intervention use; useability was measured by the ease of intervention use and the role of features to minimise errors in use. Acceptability was measured by carers' perception of the appropriateness of the content and their ability to incorporate the intervention into their daily routines. RESULTS: Of the 729 articles, six articles met the inclusion criteria. Attrition ranged from 14% - 77%, recruitment rates from 20% - 66% and intervention useability varied across studies. Half of the studies implemented measures to improve useability. Overall, carers rated the content of the interventions as appropriate and reported improved knowledge and communication. Acceptability was further demonstrated as carers preferred the flexibility available with web-based interventions. CONCLUSIONS: Technology-based interventions are suitable for use among carers of people with cancer. Further research is required to fully assess the impact of technology as an information and support mechanism for carers.

Efficacy of a telephone outcall program to reduce caregiver burden among caregivers of cancer patients [PROTECT]: a randomised controlled trial.

BACKGROUND: Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes. METHODS: Cancer patient/caregiver dyads (N = 216) were randomised to a telephone outcall program (n = 108) or attention control group (n = 108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed. RESULTS: The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean = 2.66, 95% confidence interval (CI) [1.91-3.54]; intervention group 1 month post intervention, mean = 0.85, 95%CI [0.42-1.44]; control group baseline, mean = 1.30 95%CI [0.80-1.94], control group 1 month post intervention, mean = 1.02 95%CI [0.52-1.69]; p = 0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers' confidence in having sufficient information to manage their health (p = 0.040). No effects were found for patients' depressive symptoms, unmet needs, self-empowerment, and other health literacy domains. CONCLUSIONS: While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations. TRIAL REGISTRATION: ACTRN12613000731796 ; prospectively registered on 02/07/2013.

Caring for the person with cancer: Information and support needs and the role of technology.

OBJECTIVE: Informal carers experience a variety of information and support needs when providing care to someone with cancer. It is unclear when carers seek information and what resources they access to support themselves throughout the cancer trajectory. METHODS: A sample of 45 carers and 15 oncology nurses were recruited to participate in either focus groups or phone interviews. RESULTS: Carers in the study were more likely to be women (60%), caring for a spouse or partner (64.4%), living with the patient (86.7%), and hold a university degree (46.7%). The majority of oncology nurses were females (66.6%). Findings showed that carers had limited access to adequate information as needs arose. Supports used to address information needs included information booklets, the Internet, and communication with healthcare professionals or with other carers. Barriers in communication between nurses and carers impacted on the adequacy of information received. Participants reported that technology, such as smartphone applications, might be appropriate for improving information and support needs. CONCLUSIONS: Caring for someone with cancer is multifaceted. Carers need access to timely information to help them effectively manage patients' needs. Future studies should assess the role of contemporary approaches, such as digital technology, as a solution to the delivery of information and support for carers of people with cancer.

Dying persons' perspectives on, or experiences of, participating in research: An integrative review.

BACKGROUND: Conducting research with dying persons can be controversial and challenging due to concerns for the vulnerability of the dying and the potential burden on those who participate with the possibility of little benefit. AIM: To conduct an integrative review to answer the question 'What are dying persons' perspectives or experiences of participating in research? DESIGN: A structured integrative review of the empirical literature was undertaken. DATA SOURCES: Cumulative Index Nursing and Allied Health Complete, PsycINFO, MEDLINE, Informit and Embase databases were searched for the empirical literature published since inception of the databases until February 2017. RESULTS: From 2369 references, 10 papers were included in the review. Six were qualitative studies, and the remaining four were quantitative. Analysis revealed four themes: value of research, desire to help, expression of self and participation preferences. Dying persons value research participation, regarding their contribution as important, particularly if it provides an opportunity to help others. Participants perceived that the potential benefits of research can and should be measured in ways other than life prolongation or cure. Willingness to participate is influenced by study type or feature and degree of inconvenience. CONCLUSION: Understanding dying persons' perspectives of research participation will enhance future care of dying persons. It is essential that researchers do not exclude dying persons from clinically relevant research due to their prognosis, fear or burden or perceived vulnerability. The dying should be afforded the opportunity to participate in research with the knowledge it may contribute to science and understanding and improve the care and treatment of others.

Communicating end-of-life care goals and decision-making among a multidisciplinary geriatric inpatient rehabilitation team: A qualitative descriptive study.

BACKGROUND: In geriatric inpatient rehabilitation settings, where the goal is to optimise function, providing end-of-life care can be challenging. AIM: The aim of this study is to explore how end-of-life care goals and decision-making are communicated in a geriatric inpatient rehabilitation setting. DESIGN: The design is a qualitative descriptive design using semi-structured individual and group interviews. SETTING/PARTICIPANTS: This study was conducted in a 154-bed facility in metropolitan Melbourne, Australia, providing geriatric inpatient rehabilitation for older patients; medical, nursing and allied health clinicians, who had cared for an inpatient who died, were recruited. DATA COLLECTION: Participants were interviewed using a conversational approach, guided by an 'aide memoire'. RESULTS: A total of 19 clinicians participated in this study, with 12 interviewed individually and the remaining 7 clinicians participating in group interviews. The typical patient was described as older, frail and with complex needs. Clinicians described the challenge of identifying patients who were deteriorating towards death, with some relying on others to inform them. How patient deterioration and decision-making was communicated among the team varied. Communication with the patient/family about dying was expected but did not always occur, nor was it always documented. Some clinicians relied on documentation, such as commencement of a dying care pathway to indicate when a patient was dying. CONCLUSION: Clinicians reported difficulties recognising patient deterioration towards death. Uncertainty and inconsistent communication among clinicians about patient deterioration negatively impacted team understanding, decision-making, and patient and family communication. Further education for all members of the multidisciplinary team focusing on how to recognise and communicate impending death will aid multidisciplinary teams to provide quality end-of-life care when required.