Providing Palliative Care for the Child with Cancer: The Experience of GPs

Background Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007). A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home. Methods Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs. Findings This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll. Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity. Conclusions/points of interest Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care. This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).

Time-limited home-care reablement services for maintaining and improving the functional independence of older adults

Background: Reablement, also known as restorative care, is one possible approach to home-care services for older adults at risk of functional decline. Unlike traditional home-care services, reablement is frequently time-limited (usually six to 12 weeks) and aims to maximise independence by offering an intensive multidisciplinary, person-centred and goal-directed intervention. Objectives: To assess the effects of time-limited home-care reablement services (up to 12 weeks) for maintaining and improving the functional independence of older adults (aged 65 years or more) when compared to usual home-care or wait-list control group. Search methods: We searched the following databases with no language restrictions during April to June 2015: the Cochrane Central Register of Controlled Trials (CENTRAL); MEDLINE (OvidSP); Embase (OvidSP); PsycINFO (OvidSP); ERIC; Sociological Abstracts; ProQuest Dissertations and Theses; CINAHL (EBSCOhost); SIGLE (OpenGrey); AgeLine and Social Care Online. We also searched the reference lists of relevant studies and reviews as well as contacting authors in the field. Selection criteria: We included randomised controlled trials (RCTs), cluster randomised or quasi-randomised trials of time-limited reablement services for older adults (aged 65 years or more) delivered in their home; and incorporated a usual home-care or wait-list control group. Data collection and analysis: Two authors independently assessed studies for inclusion, extracted data, assessed the risk of bias of individual studies and considered quality of the evidence using GRADE. We contacted study authors for additional information where needed. Main results: Two studies, comparing reablement with usual home-care services with 811 participants, met our eligibility criteria for inclusion; we also identified three potentially eligible studies, but findings were not yet available. One included study was conducted in Western Australia with 750 participants (mean age 82.29 years). The second study was conducted in Norway (61 participants; mean age 79 years). We are very uncertain as to the effects of reablement compared with usual care as the evidence was of very low quality for all of the outcomes reported. The main findings were as follows. Functional status: very low quality evidence suggested that reablement may be slightly more effective than usual care in improving function at nine to 12 months (lower scores reflect greater independence; standardised mean difference (SMD) -0.30; 95% confidence interval (CI) -0.53 to -0.06; 2 studies with 249 participants). Adverse events: reablement may make little or no difference to mortality at 12 months' follow-up (RR 0.97; 95% CI 0.74 to 1.29; 2 studies with 811 participants) or rates of unplanned hospital admission at 24 months (RR 0.94; 95% CI 0.85 to 1.03; 1 study with 750 participants). The very low quality evidence also means we are uncertain whether reablement may influence quality of life (SMD -0.23; 95% CI -0.48 to 0.02; 2 trials with 249 participants) or living arrangements (RR 0.92, 95% CI 0.62 to 1.34; 1 study with 750 participants) at time points up to 12 months. People receiving reablement may be slightly less likely to have been approved for a higher level of personal care than people receiving usual care over the 24 months' follow-up (RR 0.87; 95% CI 0.77 to 0.98; 1 trial, 750 participants). Similarly, although there may be a small reduction in total aggregated home and healthcare costs over the 24-month follow-up (reablement: AUD 19,888; usual care: AUD 22,757; 1 trial with 750 participants), we are uncertain about the size and importance of these effects as the results were based on very low quality evidence. Neither study reported user satisfaction with the service. Authors' conclusions: There is considerable uncertainty regarding the effects of reablement as the evidence was of very low quality according to our GRADE ratings. Therefore, the effectiveness of reablement services cannot be supported or refuted until more robust evidence becomes available. There is an urgent need for high quality trials across different health and social care systems due to the increasingly high profile of reablement services in policy and practice in several countries.

End-of-life care pathways for improving outcomes in caring for the dying (Review)

Background In many clinical areas, integrated care pathways are utilised as structured multidisciplinary care plans which detail essential steps in caring for patients with specific clinical problems. Particularly, care pathways for the dying have been developed as a model to improve the end-of-life care of all patients. They aim to ensure that the most appropriate management occurs at the most appropriate time and that it is provided by the most appropriate health professional. Clinical pathways for end-of-life care management are used widely around the world and have been regarded as the gold standard. Therefore, there is a significant need for clinicians to be informed about the utilisation of end-of-life care pathways with a systematic review. Objectives To assess the effects of end-of-life care pathways, compared with usual care (no pathway) or with care guided by another end-of-life care pathway across all healthcare settings (e.g. hospitals, residential aged care facilities, community). Search strategy The Cochrane Register of controlled Trials (CENTRAL), the Pain, Palliative and Supportive Care Review group specialised register,MEDLINE, EMBASE, review articles and reference lists of relevant articles were searched. The search was carried out in September 2009. Selection criteria All randomised controlled trials (RCTs), quasi-randomised trial or high quality controlled before and after studies comparing use versus non-use of an end-of-life care pathway in caring for the dying. Data collection and analysis Results of searches were reviewed against the pre-determined criteria for inclusion by two review authors. Main results The search identified 920 potentially relevant titles, but no studies met criteria for inclusion in the review. Authors’ conclusions Without further available evidence, recommendations for the use of end-of-life pathways in caring for the dying cannot be made. RCTs or other well designed controlled studies are needed for evaluating the use of end-of-life care pathways in caring for dying people.

Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. The findings from the analysis of 721 services’ records from three Australian states, and feedback from health professionals in interviews and postal surveys, demonstrated that there were aspects of being on one’s own with a terminal illness and living at home that require a specialised approach and support. This study explored the issues of palliative care patients living alone, from a service provider perspective, and provided evidence-based information to assist with service planning. The study made recommendations to the Australian Department of Health and Ageing about services considered important in developing support structures for this growing population.

Audit of the Care of the Dying in a Network of Hospitals and Institutions in Queensland

Background: Most Australians die in institutions and there is evidence to suggest that the care of these patients is not always optimal. Care pathways for the dying have been designed to transfer benchmarked hospice care to other settings (e.g. acute hospitals and residential age-care facilities) by defining goals of best care, providing guidelines to provide that care and documenting outcome. Method: A retrospective audit was undertaken across a network of health-care institutions in Queensland. The 18 goals considered essential for the care of the dying within the Liverpool Care Pathway were taken as a benchmark. Documentation of achievement of each of these goals was sought. Results: The notes of 160 patients who had died in eight institutions (four hospitals, three hospices, one nursing home) were reviewed. Several areas for improvement were identified, particularly in those goals relating to communication, resuscitation orders and care after death. Few units documented the provision of written information to families. Most patients were prescribed medications in anticipation of pain and agitation but less were prescribed drugs for other common symptoms in the dying. Most of the goals were achieved in a higher percentage of cases in hospice units. Marked differences in practice were noted between different institutions. Conclusion: The audit identified several aspects in the care of the terminally ill that could be improved. End-stage pathways may provide a model for improving the care of patients dying in hospitals and institutions in Australia.

A Cochrane review on the effects of end-of-life care pathways : do they improve patient outcomes?

Clinical pathways for end-of-life care management are used widely around the world and have been regarded as the gold standard. The aim of this review was to assess the effects of end-of-life care pathways (EOLCP), compared with usual care (no pathway) or with care guided by a different end-of-life care pathway, across all healthcare settings (e.g. hospitals, residential aged care facilities, community). We searched the Cochrane Register of Controlled Trials (CENTRAL), the Pain, Palliative and Supportive Care Review group specialised register, MEDLINE, EMBASE, review articles and reference lists of relevant articles. The search was carried out in September 2009. All randomised controlled trials (RCTs), quasi-randomised trials or high quality controlled before and after studies comparing use versus non-use of an EOLCP in caring for the dying were considered for inclusion. The search identified 920 potentially relevant titles, but no studies met criteria for inclusion in the review. Without further available evidence, recommendations for the use of end-of-life pathways in caring for the dying cannot be made. There are now recent concerns regarding the big scale roll-out of EOLCP despite the lack of evidence, nurses should report any safety concerns or adverse effects associated with such pathways.

Fish out of water : refugee and international students in mainstream Australian schools

In this paper, the authors combine Pierre Bourdieu’s concept of hysteresis (the ‘fish out of water’ experience) with the discourse historical approach to critical discourse analysis (CDA) as a theoretical and analytical framework through which they examine specific moments in the schooling experiences of one refugee student and one international student, both enrolled in post-compulsory education in Australian mainstream secondary schools. We examine specific moments – as narrated by these students during interviews – in which these students can be described as ‘fish out of water’. As such, this paper takes up the concerns of researchers who call for an examination of the lived geographies and the everyday lives of individual students in mainstream schools. We find that our students’ habitus, conditioned by their previous schooling experiences in their home countries, did not match their new Australian schools, resulting in frustration with, and alienation from, their mainstream schools. However, we also note that schools, too, need to adapt and adjust their habitus to the new multicultural world, in which there are international and refugee students among their usual cohort of mainstream students.

Language and utilisation of emergency care in Queensland

Objective: To compare access and utilisation of EDs in Queensland public hospitals between people who speak only English at home and those who speak another language at home. Methods: A retrospective analysis of a Queensland statewide hospital ED dataset (ED Information System) from 1 January 2008 to 31 December 2010 was conducted. Access to ED care was measured by the proportion of the state’s population attending EDs. Logistic regression analyses were performed to determine the relationships between ambulance use and language, and between hospital admission and language, both after adjusting for age, sex and triage category. Results: The ED utilisation rate was highest in English only speakers (290 per 1000 population), followed by Arabic speakers (105), and lowest among German speakers (30). Compared with English speakers, there were lower rates of ambulance use in Chinese (odds ratio 0.50, 95% confidence interval, 0.47–0.54), Vietnamese (0.87, 0.79–0.95), Arabic (0.87, 0.78–0.97), Spanish (0.56, 0.50–0.62), Italian (0.88, 0.80–0.96), Hindi (0.61, 0.53–0.70) and German (0.87, 0.79–0.90) speakers. Compared with English speakers, German speakers had higher admission rates (odds ratio 1.17, 95% confidence interval, 1.02–1.34), whereas there were lower admission rates in Chinese (0.90, 0.86–0.99), Arabic (0.76, 0.67–0.85) and Spanish (0.83, 0.75–0.93) speakers. Conclusion: This study showed that there was a significant association between lower utilisation of emergency care and speaking languages other than English at home. Further researches are needed using in-depth methodology to investigate if there are language barriers in accessing emergency care in Queensland.

Personal preferences for end-of-life care among Taiwanese community city dwellers : an inductive approach for qualitative data

Background: As an increasing number of Taiwanese people live out the final stages of their lives with chronic and complex conditions. Care decisions at the end of life can also be complex, overwhelming and stressful for an individual, family and health professionals. Understanding individuals’ wishes for end-of-life care and factors which influence individuals' decisions is important so that the provision of quality end-of-life care for all can be promoted and ensured.

The effects of the indoor environment of residential care homes on dementia suffers in Hong Kong : a critical incident technique approach

Dementia is an irreversible and incurable syndrome that leads to progressive impairment of cognitive functions and behavioural and psychological symptoms such as agitation, depression and psychosis. Appropriate environmental conditions can help delay its onset and progression, and indoor environmental (IE) factors have a major impact. However, there is no firm understanding of the full range of relevant IE factors and their impact levels. This paper describes a preliminary study to investigate the effects of IE on Hong Kong residential care homes (RCH) dementia residents. This involved six purposively selected focus groups, each comprising the main stakeholders of the dementia residents’ caregivers, RCH staff and/or registered nurses, and architects. Using the Critical Incident Technique, the main context and experiences of behavioural problems of dementia residents caused by IE were explored and the key causal RCH IE quality factors identified, together with the associated responses and stress levels involved. The findings indicate that the acoustic environment, lighting and thermal environment are the most important influencing factors. Many of the remedies provided by the focus groups are quite simple to carry out and are summarised in the form of recommendations to current RCHs providers and users. The knowledge acquired in this initial study will help enrich the knowledge of IE design for dementiaspecific residential facilities. It also provides some preliminary insights for healthcare policymakers and practitioners in the building design/facilities management and dementia-care sectors into the IE factors contributing to a more comfortable, healthy and sustainable RCH living environment in Hong Kong.

What are pregnant women told about models of maternity care in Australia? A retrospective study of women's reports

Objective To describe women’s reports of the model of care options General Practitioners (GPs) discussed with them at the first pregnancy consultation and women’s self-reported role in decisionmaking about model of care. Methods Women who had recently given birth responded to survey items about the models of care GPs discussed, their role in final decision-making, and socio-demographic, obstetric history, and early pregnancy characteristics. Results The proportion of women with whom each model of care was discussed varied between 8.2% (for private midwifery care with home birth) and 64.4% (GP shared care). Only 7.7% of women reported that all seven models were discussed. Exclusive discussion about private obstetric care and about all public models was common, and women’s health insurance status was the strongest predictor of the presence of discussions about each model. Most women (82.6%) reported active involvement in final decision-making about model of care. Conclusion Although most women report involvement in maternity model of care decisions, they remain largely uninformed about the breadth of available model of care options. Practical implications Strategies that facilitate women’s access to information on the differentiating features and outcomes for all models of care should be prioritized to better ensure equitable and quality decisions.

In and out of preschool learning with iPads

In this chapter we describe and explain the ways we negotiated these same epistemological tensions and structural realities as we implemented the iPad loan component of the project reported in this book (hereafter: “iPad loan program”).Children who participated in the iPad loan program were able to take home one of the project iPads used in their preschool centre, much as they were able to take home books and puzzles. This component was one reflection of the ethos of “digital inclusion” that infused the project. As we noted in the introduction to this book, there is international recognition of the role that schools can play in ensuring all communities can participate in digital culture and the digital economy (e.g., European Commission, 2014; United States Government, 2013). Accordingly, we conducted the project in preschool centres where at least some groups of children were thought to enjoy less access to learning on digital platforms than others. Our goal was to put the iPad into the hands of children who might not otherwise have had access to it, while supporting teachers and parents in capitalising on the learning potential of the device for all the children. Centres nominated for the project by administrators in the preschool system all served communities that were either affected by poverty and/or diverse in language and culture.

A call for better care: the impact of postnatal contact services on women’s parenting confidence and experiences of postpartum care in Queensland, Australia

Background Universal postnatal contact services are provided in several Australian states, but their impact on women’s postnatal care experience has not been evaluated. Furthermore, there is lack of evidence or consensus about the optimal type and amount of postpartum care after hospital discharge for maternal outcomes. This study aimed to assess the impact of providing Universal Postnatal Contact Service (UPNCS) funding to public birthing facilities in Queensland, Australia on women’s postnatal care experiences, and associations between amount and type (telephone or home visits) of contact on parenting confidence, and perceived sufficiency and quality of postnatal care. Methods Data collected via retrospective survey of postnatal women (N = 3,724) were used to compare women who birthed in UPNCS-funded and non-UPNCS-funded facilities on parenting confidence, sufficiency of postnatal care, and perceived quality of postnatal care. Associations between receiving telephone and home visits and the same outcomes, regardless of UPNCS funding, were also assessed. Results Women who birthed in an UPNCS-funded facility were more likely to receive postnatal contact, but UPNCS funding was not associated with parenting confidence, or perceived sufficiency or perceived quality of care. Telephone contact was not associated with parenting confidence but had a positive dose–response association with perceived sufficiency and quality. Home visits were negatively associated with parenting confidence when 3 or more were received, had a positive dose–response association with perceived sufficiency and were positively associated with perceived quality when at least 6 were received. Conclusions Funding for UPNCS is unlikely to improve population levels of maternal parenting confidence, perceived sufficiency or quality of postpartum care. Where only minimal contact can be provided, telephone may be more effective than home visits for improving women’s perceived sufficiency and quality of care. Additional service initiatives may be needed to improve women’s parenting confidence.

Towards a consistent definition of a significant delta troponin with z-scores: A way out of chaos?

Aims: We assessed the diagnostic performance of z-scores to define a significant delta cardiac troponin (cTn) in a cohort of patients with well-defined clinical outcomes. Methods: We calculated z-scores, which are dependent on the analytical precision and biological variation, to report changes in cTn. We compared the diagnostic performances of a relative delta (%Δ), actual delta (Δ), and z-scores in 762 emergency department patients with symptoms of suspected acute coronary syndrome. cTn was measured with sensitive cTnI (Beckman Coulter), highly sensitive cTnI (Abbott), and highly sensitive cTnT (Roche) assays. Results: Receiver operating characteristic analysis showed no statistically significant differences in the areas under the curve (AUC) of z-scores and Δ with both superior compared to %Δ for all three assays (p<0.001). The AUCs of z-scores measured with the Abbott hs-cTnI (0.955) and Roche hs-cTnT (0.922) assays were comparable to Beckman Coulter cTnI (0.933) (p=0.272 and 0.640, respectively). The individualized Δ cut-off values that were required to emulate a z-score of 1.96 were: Beckman Coulter cTnI 30 ng/l, Abbott hs-cTnI 20 ng/l, and Roche hs-cTnT 7 ng/l. Conclusions: z-scores allow the use of a single cut-off value at all cTn levels, for both cTnI and cTnT and for sensitive and highly sensitive assays, with comparable diagnostic performances. This strategy of reporting significant changes as z-scores may obviate the need for the empirical development of assay-specific cut-off rules to define significant troponin changes.