Constructing a global understanding of the social ecology of leaving out of home care

Engagement with globalisation is growing in the field of youth transitions from out of home care. This includes cross national exchange of research, policy and practise, regional advocacy networking and global policy development. Furthering this emerging international child welfare perspective requires extending it to countries in the developing world and building conceptual frameworks which encompass a social ecology of care leaving, including its global dimension, the latter needs to address not only the needs, expectations and rights of care leavers but also the theories of change underpinning service design and delivery. Such a model is presented combining resilience and social capital as personal assets situated within a social ecology of support. To illustrate how this provides a means to help engage with the experience of countries where there appears to be very little information available on care leaving, a small scale South African initiative is considered. SA-YES is a youth mentoring project for young people leaving a variety of out of home placements. Planned as a three-year pilot, initial results are encouraging but require more rigorous evaluation focusing on program process and outcomes, quality of interpersonal relationships and synchronisation with cultural expectations and policy environment.

International Association for Hospice and Palliative Care (IAHPC) List of Essential Practices in Palliative Care

The objective of this study was to identify, through a consensus process, the essential practices in primary palliative care. A three-phase study was designed. Phase 1 methods included development of a working group; a literature review; development of a baseline list of practices; and identification of levels of intervention. In Phase 2, physicians, nurses, and nurse aides (n = 425) from 63 countries were asked in three Delphi rounds to rate the baseline practices as essential or nonessential and select the appropriate levels of intervention for each. In Phase 3, representatives of 45 palliative care organizations were asked to select and rank the 10 most important practices resulting from Phase 2. Scores (1-10) were assigned to each, based on the selected level of importance. Results of Phase 1 were a baseline list of 140 practices. Three levels of intervention were identified: Identification/Evaluation; Diagnosis; and Treatment/Solution measures. In Phase 2, the response rates (RR) for the Delphi rounds were 96.5%, 73.6%, and 71.8%, respectively. A consensus point (=80% agreement) was applied, resulting in 62 practices. In Phase 3, RR was 100%. Forty-nine practices were selected and ranked. "Evaluation, Diagnosis and Treatment of Pain" scored the highest (352 points). The working group (WG) arranged the resulting practices in four categories: Physical care needs, Psychological/Emotional/Spiritual care needs, Care Planning and Coordination, and Communication. The IAHPC List of Essential Practices in Palliative care may help define appropriate primary palliative care and improve the quality of care delivered globally. Further studies are needed to evaluate their uptake and impact.

Family caregiver views on patient-centred care at the end of life

Aim: The purpose of this study was to evaluate the patient-centredness of community palliative care from the perspective of family members who were responsible for the care of a terminally ill family member. Method: A survey questionnaire was mailed to families of a deceased family member who had been designated as palliative and had received formal home care services in the central west region of the Province of Ontario, Canada. Respondents reported on service use in the last four weeks of life; the Client-Centred Care Questionnaire (CCCQ) was used to evaluate the extent to which care was patient-centred. The accessibility instrument was used to assess respondent perception of access to care. Descriptive and inferential statistics were used for data analyses. Results: Of the 243 potential participants, 111 (46.0%) family caregivers completed the survey questionnaire. On average, respondents reported that they used five different services during the last four weeks of the care recipient's life. When asked about programme accessibility, care was also perceived as largely accessible and responsive to patients' changing needs (M=4.3 (SD=1.04)]. Most respondents also reported that they knew what service provider to contact if they experienced any problems concerning the care of their family member. However, this service provider was not consistent among respondents. Most respondents were relatively positive about the patient-centred care they received. There were however considerable differences between some items on the CCCQ. Respondents tended to provide more negative ratings concerning practical arrangement and the organization of care: who was coming, how often and when. They also rated more negatively the observation that service providers were quick to say something was possible when it was not the case. Bivariate analyses found no significant differences in CCCQ or accessibility domain scores by caregiver age, care recipient age, income, education and caregiver sex. Conclusions: Patient-centred care represents a service attribute that should be recognized as an important outcome to assess the quality of service delivery. This study demonstrates how this attribute can be evaluated in the provision of care. © 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic College of Caring Science.

Moving to evidence-based practice in long-term care:the role of a Best Practise Resource Centre in two long-term care settings.

In this article, the authors provide an overview on the development of a Long-Term Care Best Practise Resource Centre. The results of both a feasibility study and the outcomes of a 1-year demonstration project are presented. The demonstration project involved a hospital as the information service provider and two demonstration sites, a home care service agency and a nursing home that used the services of the Centre. The goals of the Centre were threefold: provide access to literature for staff in long-term care (LTC) settings; improve the information management skills of health care providers; and support research and the integration of best practices in LTC organizations. The results of the pilot study contributed to the development of a collaborative information access system for LTC clinicians and managers that provides timely, up-to-date information contributing to improving the quality of care for adults receiving LTC. Based on this demonstration project, strategies for successful innovation in LTC are identified.

Substituting home care for hospitalization:The role of a quick response service for the elderly

The purpose of the present study was to examine the role of a rapid access home-based service as a means for the elderly to avoid admission to an acute-care hospital. The setting for the study included emergency departments in three acute care hospitals and a home care program in a mid-size Canadian city. Multiple sources of information were obtained to evaluate the service. Hospital emergency department records and home care records were reviewed. Patients who participated in the service (n=96) and physicians and nurses (n =119) who had involvement with the service were surveyed appraising the service in terms of relevance, access, quality and coordination. Study results revealed that elderly women with multiple health problems who lived alone were the most frequent users of the service. The majority of the patients admitted to the service presented with problems of a functional nature that were the result of a fall or mobility problems. The results indicated that the service did avert hospital admissions and facilitated a process by which patients could avoid the intermediate step of hospitalization before placed in a higher level of care or returning to previous levels of functioning. Economic analysis indicated that the value of the service stemmed from the benefits to patients and caregivers rather than from cost savings offered to acute care hospitals.

The impact of specialized oncology nursing on patient supportive care outcomes

Meeting the supportive care needs of cancer patients remains a challenge to cancer care systems around the world. Despite significant improvements in the organization of medical care of patients with cancer, numerous surveys of cancer populations demonstrate that significant proportions of patients fail to have their supportive care needs met. One possible solution is the introduction of a care coordinator role using oncology nursing to help ensure that patients' physical, psychological, and social support needs are addressed. Although having face validity, there is little empirical evidence on the effects of nurse-led supportive care coordinator roles on patient reported supportive care outcomes. In this article the authors present the results of a prospective longitudinal cohort study of 113 patients referred to a community-based specialist oncology nursing program. Using validated instruments they found significant improvements in patient-reported outcomes in key supportive care domains: unmet needs, quality of life, and continuity of care, as well as a shift in patterns of health resource utilization from acute care settings to the community over the course of the intervention. The results of this study are important in supporting the design and development of controlled trials to examine provider roles in the coordination of supportive cancer care. Copyright © Taylor & Francis Group, LLC.

A proposed systems approach to the evaluation of integrated palliative care

Background. There is increasing global interest in regional palliative care networks (PCN) to integrate care, creating systems that are more cost-effective and responsive in multi-agency settings. Networks are particularly relevant where different professional skill sets are required to serve the broad spectrum of end-of-life needs. We propose a comprehensive framework for evaluating PCNs, focusing on the nature and extent of inter-professional collaboration, community readiness, and client-centred care. Methods. In the absence of an overarching structure for examining PCNs, a framework was developed based on previous models of health system evaluation, explicit theory, and the research literature relevant to PCN functioning. This research evidence was used to substantiate the choice of model factors. Results. The proposed framework takes a systems approach with system structure, process of care, and patient outcomes levels of consideration. Each factor represented makes an independent contribution to the description and assessment of the network. Conclusions. Realizing palliative patients' needs for complex packages of treatment and social support, in a seamless, cost-effective manner, are major drivers of the impetus for network-integrated care. The framework proposed is a first step to guide evaluation to inform the development of appropriate strategies to further promote collaboration within the PCN and, ultimately, optimal palliative care that meets patients' needs and expectations. © 2010 Bainbridge et al; licensee BioMed Central Ltd.

Optimizing Research on End-of-Life Care for Seniors:The Collective New Emerging Team on End of Life Care for Seniors University of Ottawa, Institute of Palliative Care

Background: End-of-life care for seniors is an important and neglected area of research. The University of Ottawa Institute of Palliative Care has expanded its research capacity by developing a Canadian Institutes of Health Research (CIHR) funded new emerging team on end-of-life care for seniors. This initiative brings together an interdisciplinary team of researchers from palliative care and geriatrics to develop a comprehensive program of research. Methods: 1) A variety of investigators from the fields of palliative care and geriatrics and disciplines of epidemiology, medicine, nursing, psychology and social work will collaborate on the development of a research agenda focussed on end-of-life care for seniors. 2) The conceptual model for the research program consists of 4 broad interrelated domains that are congruent with the CIHR themes of health services, clinical issues, population health and psychosocial, cultural, spiritual and ethical issues; this framework will guide the research program and all studies emanating from the program. 3) Research studies will focus on 5 areas of inquiry that are central to end-of-life care for seniors: palliative end-of-life care for rural seniors, care settings, burden, role of volunteers, and delirium. Results: This new team has the potential to obtain peer-reviewed funding, recruit and train a new generation of researchers, and build a network of concerned researchers. Conclusions: The new team should ultimately contribute to an improved quality of care for seniors who are approaching death.

Measuring horizontal integration among health care providers in the community: An examination of a collaborative process within a palliative care network

In many countries formal or informal palliative care networks (PCNs) have evolved to better integrate community-based services for individuals with a life-limiting illness. We conducted a cross-sectional survey using a customized tool to determine the perceptions of the processes of palliative care delivery reflective of horizontal integration from the perspective of nurses, physicians and allied health professionals working in a PCN, as well as to assess the utility of this tool. The process elements examined were part of a conceptual framework for evaluating integration of a system of care and centred on interprofessional collaboration. We used the Index of Interdisciplinary Collaboration (IIC) as a basis of measurement. The 86 respondents (85% response rate) placed high value on working collaboratively and most reported being part of an interprofessional team. The survey tool showed utility in identifying strengths and gaps in integration across the network and in detecting variability in some factors according to respondent agency affiliation and profession. Specifically, support for interprofessional communication and evaluative activities were viewed as insufficient. Impediments to these aspects of horizontal integration may be reflective of workload constraints, differences in agency operations or an absence of key structural features.

Urban and rural differences in risk of admission to a care home: a census-based follow-up study

Research on admissions to care homes for older people has paid more attention to individual and social characteristics than to geographical factors. This paper considers rural-urban differences in household composition and admission rates. Cohort: 51,619 people aged 65 years or older at the time of the 2001 Census and not living in a care home, drawn from a data linkage study based on c.28% of the Northern Ireland population.Living alone was less common in rural areas; 25% of older people in rural areas lived with children compared to 18% in urban areas. Care home admission was more common in urban (4.7%) and intermediate (4.3%) areas than in rural areas (3.2%). Even after adjusting for age, sex, health and living arrangements, the rate of care home admission in rural areas was still only 75% of that in urban areas.People in rural areas experience better family support by living as part of two or three generation households. Even after accounting for this difference, older rural dwellers are less likely to enter care homes; suggesting that neighbours and relatives in rural areas provide more informal care; or that there may be differential deployment of formal home care services.

A Qualitative Exploration of Perceived Key Knowledge and Skills in End-of-Life Care in Dementia Patients among Medical, Nursing, and Pharmacy Students

Background: The steady increase in the number of people living and dying with dementia, coupled with the recent focus on quality of care, has highlighted the importance of dementia training for health care professionals. This exploratory study aimed to discover which skills health care students felt were important in providing quality end-of-life care to dementia patients.

Methods: Ninety-four medicine, nursing, and pharmacy students participated in a larger study using open-ended and closed questions to explore attitudes related to caring for dementia patients at the end of life. This study looks at the student responses to an open-ended question regarding the skills and knowledge they believe are needed to provide end-of-life care to dementia patients. Individual responses were reviewed by the researchers, coded into key issues, and tabulated for frequency of occurrences and group differences.

Results: Several common issues emerged: knowledge, patience, empathy, understanding, family involvement, compassion, medication knowledge, respect/patient autonomy, communication, quality of life, and patient education. Significant differences were observed among the participant groups on the following issues: Patience and understanding (pharmacy students mentioned these issues less frequently than medical and nursing students), compassion (medical students mentioned this issue more frequently than pharmacy students), and medication knowledge (pharmacy students mentioned this issue more frequently than medical and nursing students).

Conclusions: Different health care disciplines (in-training) value different skill sets for the provision of dementia care at the end-of-life. As health care education for dementia patients at the end of life is expanded, it will be important to understand which skills both patients and health care students value.

PAlliative Care in chronic Kidney diSease: the PACKS study—quality of life, decision making, costs and impact on carers in people managed without dialysis

BACKGROUND: The number of patients with advanced chronic kidney disease opting for conservative management rather than dialysis is unknown but likely to be growing as increasingly frail patients with advanced renal disease present to renal services. Conservative kidney management includes ongoing medical input and support from a multidisciplinary team. There is limited evidence concerning patient and carer experience of this choice. This study will explore quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers in people with advanced chronic kidney disease managed without dialysis and is funded by the National Institute of Health Research in the UK.

METHODS: In this prospective, multicentre, longitudinal study, patients will be recruited in the UK, by renal research nurses, once they have made the decision not to embark on dialysis. Carers will be asked to 'opt-in' with consent from patients. The approach includes longitudinal quantitative surveys of quality of life, symptoms, decision making and costs for patients and quality of life and costs for carers, with questionnaires administered quarterly over 12 months. Additionally, the decision making process will be explored via qualitative interviews with renal physicians/clinical nurse specialists.

DISCUSSION: The study is designed to capture patient and carer profiles when conservative kidney management is implemented, and understand trajectories of care-receiving and care-giving with the aim of optimising palliative care for this population. It will explore the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the experiences of care givers.

Disabled women’s experiences of accessing and utilising maternity services when they are affected by domestic abuse: a critical incident technique study

Background: Women and their babies are entitled to equal access to high quality maternity care. However, when women fit into two or more categories of vulnerability they can face multiple, compound barriers to accessing and utilising services. Disabled women are up to three times more likely to experience domestic abuse than non-disabled women. Domestic abuse may compromise health service access and utilisation and disabled people in general have suboptimal access to healthcare services. Despite this, little is known about the compounding effects of disability and domestic abuse on women’s access to maternity care.

Methods: The aim of the study was to identify how women approach maternity care services, their expectations of services and whether they are able to get the type of care that they need and want. We conducted a qualitative, Critical Incident Technique study in Scotland. Theoretically we drew on Andersen’s model of healthcare use. The model was congruent with our interest in women’s intended/actual use of maternity services and the facilitators and barriers
impacting their access to care. Data were generated during 2013 using one-to-one interviews.

Results: Five women took part and collectively reported 45 critical incidents relating to accessing and utilising maternity services. Mapped to the underpinning theoretical framework, our findings show how the four domains of attitudes; knowledge; social norms; and perceived control are important factors shaping maternity care experiences.

Conclusions: Positive staff attitude and empowering women to have control over their own care is crucial in influencing women’s access to and utilisation of maternity healthcare services. Moreover these are cyclical, with the consequences and outcomes of healthcare use becoming part of the enabling or disabling factors affecting future healthcare decisions.Further consideration needs to be given to the development of strategies to access and recruit women in these circumstances. This will provide an opportunity for under-represented and silenced voices to be heard.

A realistic evaluation of track and trigger systems and acute care training for early recognition and treatment of deteriorating ward-based patients: research protocol.

Aim The aim of the study is to evaluate factors that enable or constrain the implementation and service delivery of early warnings systems or acute care training in practice. Background To date there is limited evidence to support the effectiveness of acute care initiatives (early warning systems, acute care training, outreach) in reducing the number of adverse events (cardiac arrest, death, unanticipated Intensive Care admission) through increased recognition and management of deteriorating ward based patients in hospital [1-3]. The reasons posited are that previous research primarily focused on measuring patient outcomes following the implementation of an intervention or programme without considering the social factors (the organisation, the people, external influences) which may have affected the process of implementation and hence measured end-points. Further research which considers the social processes is required in order to understand why a programme works, or does not work, in particular circumstances [4]. Method The design is a multiple case study approach of four general wards in two acute hospitals where Early Warning Systems (EWS) and Acute Life-threatening Events Recognition and Treatment (ALERT) course have been implemented. Various methods are being used to collect data about individual capacities, interpersonal relationships and institutional balance and infrastructures in order to understand the intended and unintended process outcomes of implementing EWS and ALERT in practice. This information will be gathered from individual and focus group interviews with key participants (ALERT facilitators, nursing and medical ALERT instructors, ward managers, doctors, ward nurses and health care assistants from each hospital); non-participant observation of ward organisation and structure; audit of patients' EWS charts and audit of the medical notes of patients who deteriorated during the study period to ascertain whether ALERT principles were followed. Discussion & progress to date This study commenced in January 2007. Ethical approval has been granted and data collection is ongoing with interviews being conducted with key stakeholders. The findings from this study will provide evidence for policy-makers to make informed decisions regarding the direction for strategic and service planning of acute care services to improve the level of care provided to acutely ill patients in hospital. References 1. Esmonde L, McDonnell A, Ball C, Waskett C, Morgan R, Rashidain A et al. Investigating the effectiveness of Critical Care Outreach Services: A systematic review. Intensive Care Medicine 2006; 32: 1713-1721 2. McGaughey J, Alderdice F, Fowler R, Kapila A, Mayhew A, Moutray M. Outreach and Early Warning Systems for the prevention of Intensive Care admission and death of critically ill patients on general hospital wards. Cochrane Database of Systematic Reviews 2007, Issue 3. www.thecochranelibrary.com 3. Winters BD, Pham JC, Hunt EA, Guallar E, Berenholtz S, Pronovost PJ (2007) Rapid Response Systems: A systematic review. Critical Care Medicine 2007; 35 (5): 1238-43 4. Pawson R and Tilley N. Realistic Evaluation. London; Sage: 1997

An investigation of vision problems and the vision care system in Rural China

This paper examines the prevalence of vision problems and the accessibility to and quality of vision care in rural China. We obtained data from 4 sources: 1) the National Rural Vision Care Survey; 2) the Private Optometrists Survey; 3) the County Hospital Eye Care Survey; and 4) the Rural School Vision Care Survey. The data from each of the surveys were collected by the authors during 2012. Thirty-three percent of the rural population surveyed self-reported vision problems. Twenty-two percent of subjects surveyed had ever had a vision exam. Among those who self-reported having vision problems, 34% did not wear eyeglasses. Fifty-four percent of those with vision problems who had eyeglasses did not have a vision exam prior to receiving glasses. However, having a vision exam did not always guarantee access to quality vision care. Four channels of vision care service were assessed. The school vision examination program did not increase the usage rate of eyeglasses. Each county-hospital was staffed with three eye-doctors having one year of education beyond high school, serving more than 400,000 residents. Private optometrists often had low levels of education and professional certification. In conclusion, our findings shows that the vision care system in rural China is inadequate and ineffective in meeting the needs of the rural population sampled.