Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods
A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results
Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions
This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

User perspectives on the Swedish Maternal Health Care Register

Background: Established in 1999, the Swedish Maternal Health Care Register (MHCR) collects data on pregnancy, birth, and the postpartum period for most pregnant women in Sweden. Antenatal care (ANC) midwives manually enter data into the Web-application that is designed for MHCR. The aim of this study was to investigate midwives? experiences, opinions and use of the MHCR. Method: A national, cross-sectional, questionnaire survey, addressing all Swedish midwives working in ANC, was conducted January to March 2012. The questionnaire included demographic data, preformed statements with six response options ranging from zero to five (0 = totally disagree and 5 = totally agree), and opportunities to add information or further clarification in the form of free text comments. Parametric and non-parametric methods and logistic regression analyses were applied, and content analysis was used for free text comments. Results: The estimated response rate was 53.1%. Most participants were positive towards the Web-application and the included variables in the MHCR. Midwives exclusively engaged in patient-related work tasks perceived the register as burdensome (70.3%) and 44.2% questioned the benefit of the register. The corresponding figures for midwives also engaged in administrative supervision were 37.8% and 18.5%, respectively. Direct electronic transfer of data from the medical records to the MHCR was emphasised as significant future improvement. In addition, the midwives suggested that new variables of interest should be included in the MHCR ? e.g., infertility, outcomes of previous pregnancy and birth, and complications of the index pregnancy. Conclusions: In general, the MHCR was valued positively, although perceived as burdensome. Direct electronic transfer of data from the medical records to the MHCR is a prioritized issue to facilitate the working situation for midwives. Finally, the data suggest that the MHCR is an underused source for operational planning and quality assessment in local ANC centres.

Designing multiple user perspectives and functionality for clinical decision support systems

Clinical Decision Support Systems (CDSSs) need to disseminate expertise in formats that suit different end users and with functionality tuned to the context of assessment. This paper reports research into a method for designing and implementing knowledge structures that facilitate the required flexibility. A psychological model of expertise is represented using a series of formally specified and linked XML trees that capture increasing elements of the model, starting with hierarchical structuring, incorporating reasoning with uncertainty, and ending with delivering the final CDSS. The method was applied to the Galatean Risk and Safety Tool, GRiST, which is a web-based clinical decision support system (www.egrist.org) for assessing mental-health risks. Results of its clinical implementation demonstrate that the method can produce a system that is able to deliver expertise targetted and formatted for specific patient groups, different clinical disciplines, and alternative assessment settings. The approach may be useful for developing other real-world systems using human expertise and is currently being applied to a logistics domain. © 2013 Polish Information Processing Society.

Looking again at troubled families: parents' perspectives on multiple adversities

The 'Troubled Families' policy and intervention agenda is based on a deficit approach that tends to ignore the role of structural disadvantage in the lives of the families it targets. In an effort to support this rhetoric, both quantitative and qualitative data have been used, and misused, to create a representation of these families, which emphasizes risk and individual blame and minimizes societal factors. This current paper presents findings from an in-depth qualitative study using a biographical narrative approach to explore parents' experiences of multiple adversities at different times over the life-course. Key themes relating to the pattern and nature of adversities experienced by participants provide a more nuanced understanding of the lives of families experiencing multiple and complex problems, highlighting how multiple interpretations are often possible within the context of professional intervention. The findings support the increasing call to move away from procedurally driven, risk averse child protection practice towards more relationally based practice, which addresses not only the needs of all family members but recognizes parents as individuals in their own right.

Telephone survey of service-user experiences of a telephone-based mental health triage service

The participation of service users in all aspects of mental health service delivery including policy development, service planning and evaluation is increasingly an expectation of contemporary mental health care. Although there are a growing number of publications reporting service-user perspectives in the evaluation of mental health services, little attention has been paid to the views of service users about mental health triage services. The purpose of the study reported here was to examine service-users' (consumers and informal carers) experiences of a telephone-based mental health triage service. Using a framework developed from the World Health Organisation's elements of responsiveness, we conducted structured telephone interviews with service users who had contacted a telephone-based mental health triage service in regional Victoria, Australia. The main findings of the study were that consumers experienced more difficulty than carers in accessing the service and that, although most participants were satisfied, only a minority reported being involved in decision-making. Further work is needed to improve accessibility of mental health triage services and to investigate barriers to consumer self-referral. Professional development and practice support systems should be established to support mental health triage nurses in the development of collaborative, consumer-focused care.

Kitchens and pantries—helping or hindering? The perspectives of emergency food users in Victoria, Australia

In high-income countries, people affected by food insecurity may seek out free/subsidized food from charities. Their perceptions of the food programs provided and preferences for alternative strategies are underresearched. The aim of this study was to develop an understanding of the users’ experiences of food insecurity and gain evidence for effective responses in the future. Twelve semistructured interviews with a sample of users, who were also charity volunteers, were conducted in Victoria, Australia. A thematic analysis of the interview transcripts was undertaken. The results show that users have complex needs. Charities have both the capacity to hinder and help people maintain dignity, social inclusion, and health. Alternative community and policy food security strategies were proposed by interviewees. In the future, perspectives of affected community members must inform strategies that seek to improve people’s access to safe, nutritious, and affordable food. A human right to food framework is discussed as a mechanism to help realize food security in Australia.

Victoria's Child FIRST and IFS differential response system : progress and issues

Differential response has long been utilized by statutory child protection systems in Australia. This article describes the advent and history of Victoria's differential response system, with a particular focus on the Child FIRST and IFS programme. This program entails a partnership arrangement between the Department of Human Services child protection services and community-based, not-for-profit agencies to provide a diverse range of early intervention and prevention services. The findings of a recent external service system evaluation, a judicial inquiry, and the large-scale Child and Family Services Outcomes Survey of parents/carers perspectives of their service experiences are used to critically examine the effectiveness of this differential response approach. Service-user perspectives of the health and wellbeing of children and families are identified, as well as the recognized implementation issues posing significant challenges for the goal of an integrated partnership system. The need for ongoing reform agendas is highlighted along with the policy, program and structural tensions that exist in differential response systems, which are reliant upon partnerships and shared responsibilities for protecting children and assisting vulnerable families. Suggestions are made for utilizing robust research and evaluation that gives voice to service users and promotes their rights and interests.

An Evaluation of the Dual Diagnosis (substance use and mental health )Strategy in the South Eastern Trust Workers and Service Users Perceptions of Dual Diagnosis Issues

In the UK it is estimated that over 33% of psychiatric patients with enduring mental illness have a substance misuse problem, whilst over 50 % of clients currently accessing drug and alcohol services have a mental health problem. Between 2003 and 2013 in Northern Ireland, there were 741 recorded suicides by patients who were in contact with mental health services. Of this number, 68% (n=501) had a history of either alcohol or drug misuse or both, resulting in an average of 46 patient suicides per year associated with dual diagnosis (University of Manchester 2015).
The current evaluation examined staff attitudes towards working with dual diagnosis (co-existing difficulties) issues, staff confidence in working with clients with dual diagnosis, workers’ perceptions of the South Eastern dual diagnosis strategy and service user perspectives of dual diagnosis service provision.
The purpose of the evaluation was to provide evidence regarding the following in accordance with the current dual diagnosis strategy;
Staff understanding of the concept of dual diagnosis,
Staff attitudes towards working with dual diagnosis,
Staff confidence in working with individuals, who present with dual diagnosis,
Service users’ perspectives of SE Trust provision for dual diagnosis.
Staff views on the South Eastern Trust Dual Diagnosis Strategy.

Exploiting CAFS-ISP

In the summer of 1982, the ICLCUA CAFS Special Interest Group defined three subject areas for working party activity. These were: 1) interfaces with compilers and databases, 2) end-user language facilities and display methods, and 3) text-handling and office automation. The CAFS SIG convened one working party to address the first subject with the following terms of reference: 1) review facilities and map requirements onto them, 2) "Database or CAFS" or "Database on CAFS", 3) training needs for users to bridge to new techniques, and 4) repair specifications to cover gaps in software. The working party interpreted the topic broadly as the data processing professional's, rather than the end-user's, view of and relationship with CAFS. This report is the result of the working party's activities. The report content for good reasons exceeds the terms of reference in their strictest sense. For example, we examine QUERYMASTER, which is deemed to be an end-user tool by ICL, from both the DP and end-user perspectives. First, this is the only interface to CAFS in the current SV201. Secondly, it is necessary for the DP department to understand the end-user's interface to CAFS. Thirdly, the other subjects have not yet been addressed by other active working parties.

Using non-personal computers for eLearning: Sri Lankan experience

Communal Internet access facilities or telecentres are considered a good way to provide connectivity to people who do not possess home connectivity. Attempts are underway to utilize telecentres as eLearning centres providing access to learning materials to students who would otherwise not be able to take up eLearning. This paper reports on the findings of qualitative interviews conducted with 18 undergraduate students from two Sri Lankan universities on their eLearning experiences using communal Internet access centres. The findings suggest that despite the efforts by telecentres to provide a good service to eLearners, there are various problems faced by students including: costs, logistics, scarcity of resources, connectivity speeds, excessive procedures, and lack of support. The experiences of these Sri Lankan students suggest that there is much that needs to be understood about user perspectives in using telecentres, which could help formulate better policies and strategies to support eLearners who depend on communal access facilities.

Mobile multimedia : user and technology perspectives

As multimedia-enabled mobile devices such as smart phones and tablets are becoming the day-to-day computing device of choice for users of all ages, everyone expects that all mobile multimedia applications and services should be as smooth and as high-quality as the desktop experience. The grand challenge in delivering multimedia to mobile devices using the Internet is to ensure the quality of experience that meets the users' expectations, within reasonable costs, while supporting heterogeneous platforms and wireless network conditions. This book aims to provide a holistic overview of the current and future technologies used for delivering high-quality mobile multimedia applications, while focusing on user experience as the key requirement. The book opens with a section dealing with the challenges in mobile video delivery as one of the most bandwidth-intensive media that requires smooth streaming and a user-centric strategy to ensure quality of experience. The second section addresses this challenge by introducing some important concepts for future mobile multimedia coding and the network technologies to deliver quality services. The last section combines the user and technology perspectives by demonstrating how user experience can be measured using case studies on urban community interfaces and Internet telephones.

Social NUI: Social perspectives in natural user interfaces

Natural User Interfaces (NUI) offer rich ways for interacting with the digital world that make innovative use of existing human capabilities. They include and often combine different input modalities such as voice, gesture, eye gaze, body interactions, touch and touchless interactions. However much of the focus of NUI research and development has been on enhancing the experience of individuals interacting with technology. Effective NUIs must also acknowledge our innately social characteristics, and support how we communicate with each other, play together, learn together and collaboratively work together. This workshop concerns the social aspects of NUI. The workshop seeks to better understand the social uses and applications of these new NUI technologies -- how we design these technologies for new social practices and how we understand the use of these technologies in key social contexts.

GEO Label:user and producer perspectives on a label for geospatial data

One of the aims of the Science and Technology Committee (STC) of the Group on Earth Observations (GEO) was to establish a GEO Label- a label to certify geospatial datasets and their quality. As proposed, the GEO Label will be used as a value indicator for geospatial data and datasets accessible through the Global Earth Observation System of Systems (GEOSS). It is suggested that the development of such a label will significantly improve user recognition of the quality of geospatial datasets and that its use will help promote trust in datasets that carry the established GEO Label. Furthermore, the GEO Label is seen as an incentive to data providers. At the moment GEOSS contains a large amount of data and is constantly growing. Taking this into account, a GEO Label could assist in searching by providing users with visual cues of dataset quality and possibly relevance; a GEO Label could effectively stand as a decision support mechanism for dataset selection. Currently our project - GeoViQua, - together with EGIDA and ID-03 is undertaking research to define and evaluate the concept of a GEO Label. The development and evaluation process will be carried out in three phases. In phase I we have conducted an online survey (GEO Label Questionnaire) to identify the initial user and producer views on a GEO Label or its potential role. In phase II we will conduct a further study presenting some GEO Label examples that will be based on Phase I. We will elicit feedback on these examples under controlled conditions. In phase III we will create physical prototypes which will be used in a human subject study. The most successful prototypes will then be put forward as potential GEO Label options. At the moment we are in phase I, where we developed an online questionnaire to collect the initial GEO Label requirements and to identify the role that a GEO Label should serve from the user and producer standpoint. The GEO Label Questionnaire consists of generic questions to identify whether users and producers believe a GEO Label is relevant to geospatial data; whether they want a single "one-for-all" label or separate labels that will serve a particular role; the function that would be most relevant for a GEO Label to carry; and the functionality that users and producers would like to see from common rating and review systems they use. To distribute the questionnaire, relevant user and expert groups were contacted at meetings or by email. At this stage we successfully collected over 80 valid responses from geospatial data users and producers. This communication will provide a comprehensive analysis of the survey results, indicating to what extent the users surveyed in Phase I value a GEO Label, and suggesting in what directions a GEO Label may develop. Potential GEO Label examples based on the results of the survey will be presented for use in Phase II.

Developing user involvement in a UK cancer network:professionals’ and users’ perspectives

This paper explores the results of a consensus development exercise that explored diverse perspectives and sought to identify key principles for the development of user involvement in a cancer network. The exercise took place within one of 34 UK cancer networks and was a collaboration between the NHS, two universities and two voluntary sector organizations. The paper explores professionals’ and users’ perspectives on user involvement with reference to the current sociopolitical context of user participation. British policy documents have placed increasing emphasis on issues of patient and public participation in the evaluation and development of health services, and the issue of lay participation represents an important aspect of a critical public health agenda. The project presented here shows that developing user involvement may be a complex task, with lack of consensus on key issues representing a significant barrier. Further, the data suggest that professional responses can partly be understood in relation to specific occupational standpoints and strategies that potentially allow professionals to define and limit users’ involvement. The implications of these findings and the impact of the consensus development process itself are discussed.