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.

Urban transit quality of service : user perception and behaviour

Despite its potential multiple contributions to sustainable policy objectives, urban transit is generally not widely used by the public in terms of its market share compared to that of automobiles, particularly in affluent societies with low-density urban forms like Australia. Transit service providers need to attract more people to transit by improving transit quality of service. The key to cost-effective transit service improvements lies in accurate evaluation of policy proposals by taking into account their impacts on transit users. If transit providers knew what is more or less important to their customers, they could focus their efforts on optimising customer-oriented service. Policy interventions could also be specified to influence transit users’ travel decisions, with targets of customer satisfaction and broader community welfare. This significance motivates the research into the relationship between urban transit quality of service and its user perception as well as behaviour. This research focused on two dimensions of transit user’s travel behaviour: route choice and access arrival time choice. The study area chosen was a busy urban transit corridor linking Brisbane central business district (CBD) and the St. Lucia campus of The University of Queensland (UQ). This multi-system corridor provided a ‘natural experiment’ for transit users between the CBD and UQ, as they can choose between busway 109 (with grade-separate exclusive right-of-way), ordinary on-street bus 412, and linear fast ferry CityCat on the Brisbane River. The population of interest was set as the attendees to UQ, who travelled from the CBD or from a suburb via the CBD. Two waves of internet-based self-completion questionnaire surveys were conducted to collect data on sampled passengers’ perception of transit service quality and behaviour of using public transit in the study area. The first wave survey is to collect behaviour and attitude data on respondents’ daily transit usage and their direct rating of importance on factors of route-level transit quality of service. A series of statistical analyses is conducted to examine the relationships between transit users’ travel and personal characteristics and their transit usage characteristics. A factor-cluster segmentation procedure is applied to respodents’ importance ratings on service quality variables regarding transit route preference to explore users’ various perspectives to transit quality of service. Based on the perceptions of service quality collected from the second wave survey, a series of quality criteria of the transit routes under study was quantitatively measured, particularly, the travel time reliability in terms of schedule adherence. It was proved that mixed traffic conditions and peak-period effects can affect transit service reliability. Multinomial logit models of transit user’s route choice were estimated using route-level service quality perceptions collected in the second wave survey. Relative importance of service quality factors were derived from choice model’s significant parameter estimates, such as access and egress times, seat availability, and busway system. Interpretations of the parameter estimates were conducted, particularly the equivalent in-vehicle time of access and egress times, and busway in-vehicle time. Market segmentation by trip origin was applied to investigate the difference in magnitude between the parameter estimates of access and egress times. The significant costs of transfer in transit trips were highlighted. These importance ratios were applied back to quality perceptions collected as RP data to compare the satisfaction levels between the service attributes and to generate an action relevance matrix to prioritise attributes for quality improvement. An empirical study on the relationship between average passenger waiting time and transit service characteristics was performed using the service quality perceived. Passenger arrivals for services with long headways (over 15 minutes) were found to be obviously coordinated with scheduled departure times of transit vehicles in order to reduce waiting time. This drove further investigations and modelling innovations in passenger’ access arrival time choice and its relationships with transit service characteristics and average passenger waiting time. Specifically, original contributions were made in formulation of expected waiting time, analysis of the risk-aversion attitude to missing desired service run in the passengers’ access time arrivals’ choice, and extensions of the utility function specification for modelling passenger access arrival distribution, by using complicated expected utility forms and non-linear probability weighting to explicitly accommodate the risk of missing an intended service and passenger’s risk-aversion attitude. Discussions on this research’s contributions to knowledge, its limitations, and recommendations for future research are provided at the concluding section of this thesis.

Service user involvement in drug treatment programs: Barriers to implementation and potential benefits for client recovery

Service user forums have the potential for improving awareness of services, empowering service users and strengthening community partnerships within an inclusive treatment and rehabilitation framework. The research aimed to investigate perspectives about service user involvement in order to inform the development of effective service user forum(s) in west Ireland. A total of 30 interviews with key service providers and 12 interviews with service users were conducted, with interview questions focusing on: (1) awareness of the Service User Support Team and (2) barriers to service user involvement and the development of service user forums in the region. An integrated data collection and thematic analysis was undertaken. Current levels of service user involvement were low, restricted by one-way communication and appeared grounded in user-provider power differentials and stigma relating to drug dependency. Service providers queried the actual terms of reference, capacity and training that would be needed for service user forums to advocate and lobby for service users. The use of existing support groups, creation of internet user forums and rotation of rural meetings were recommended to promote engagement among service users. The research underscores the need for transparency, resources and a framework for good practice that reflects a participatory approach


Read More: http://informahealthcare.com/doi/abs/10.3109/09687637.2012.671860

Gaining by Giving? Peer Research into Service User and Carer Perceptions of Inclusivity in Higher Education

Service users and carers (SUAC) have made significant contributions to professional training in social work courses in Higher Education (HE) over the past decade in the UK. Such participation has been championed by government, academics and SUAC groups from a range of theoretical and political perspectives. Most research into the effectiveness of SUAC involvement at HE has come from the perspectives of academics and very little SUAC-led research exists. This qualitative peer research was led by two members of the University of Worcester’s SUAC group. Findings were that SUAC perceived their involvement brought benefits to students, staff, the University and the local community. Significant personal benefits such as finding a new support network, increased self-development and greater confidence to manage their own care were identified in ways that suggested that the benefits that can flow from SUAC involvement at HE are perhaps more far-reaching than previously recognised. Barriers to inclusion were less than previously reported in the literature and the humanising effects of SUAC involvement are presented as a partial antidote to an increasingly marketised HE culture.

Adding SUGAR : service user and carer collaboration in mental health nursing research

‘SUGAR: Service users and carers group advising on research’ is an exciting initiative established to develop collaborative working in mental health nursing research between mental health service users, carers, researchers and practitioners at City University London, UK. This paper will describe the background to SUGAR and how and why it was established; how the group operates; some of the achievements to date including researcher reflections; and case studies of how this collaboration influences our research. Written reflective narratives of service user and carer experiences of SUGAR were analysed using constant comparative methods by the members. Common themes are presented with illustrative quotes. The article highlights the benefits and possible limitations identified so far by members of SUGAR; outlines future plans and considers the findings in relation to literature on involvement and empowerment. This paper has been written by staff and members of SUGAR and is the first venture into collaborative writing of the group and reflects the shared ethos of collaborative working.

Shaping the Future of Mental Health Policy and Legislation in Northern Ireland: The Impact of Service User and Professional Social Work Discourses

This paper explores the complex interrelationship between service user and professional social work discourses and provides a critical commentary on their respective contributions to the recent review of mental health policy and legislation in Northern Ireland. The analysis indicates that dominant trends in mental health care, as mediated through service structures and institutional identities, have tended to prioritize the more coercive aspects of the social work role and reinforce existing power inequalities with service users. It is argued that such developments underline the need for a ‘refocusing’ debate in mental health social work to consider how a more appropriate balance can be achieved between its participatory/empowering and regulatory/coercive functions. Whilst highlighting both congruence and dissonance between respective discourses, the paper concludes that opportunities exist within the current change process for service users and social workers to build closer alliances in working together to reconstruct practice, safeguard human rights and develop innovative alternatives to a traditional bio-medical model of treatment.

'Like walking on eggshells': Service user views and expectations of the child protection system

This paper reports on a study of service users' views on Irish child protection services. Qualitative interviews were conducted with 67 service users, including young people between 13 and 23. The findings showed that despite refocusing and public service management reforms, service users still experience involvement with the services as intimidating and stressful and while they acknowledged opportunities to participate in the child protection process, they found the experience to be very difficult. Their definition of ‘needs’ was somewhat at odds with that suggested in official documentation, and they viewed the execution of a child protection plan more as a coercive requirement to comply with ‘tasks’ set by workers than a conjoint effort to enhance their children's welfare. As in previous studies, the data showed how the development of good relationships between workers and service users could compensate for the harsher aspects of involvement with child protection. In addition, this study demonstrated a high level of discernment on the part of service users, highlighting their expectation of quality standards in respect of courtesy, respect, accountability, transparency and practitioner expertise.

Service User and Carer Involvement in Role-Plays to Assess Readiness for Practice

Service user and carer involvement in social work education is now well established since its inception as a compulsory requirement in the social work curriculum in the United Kingdom in 2003. Since then, there have been many examples of how such involvement has been approached by education providers. Nevertheless, one of the key obstacles and challenges in this field continues to centre on the need to achieve non-tokenistic user involvement which cements the engagement of service users and carers at the heart of social work education. This paper describes one such initiative where service user and carer colleagues in a university in Northern Ireland have been actively involved in the assessment of first year social work students’ preparation for their first period of practice learning. The paper presents the background to this initiative explaining how the project unfolded; the detailed preparations that were involved and the evidence gathered from evaluations undertaken with the students, service users and carers, and academic colleagues who were all involved. We believe that the findings from this project can contribute to the advancement of existing knowledge in the field in exploring and recommending creative methodologies for user involvement in social work education.

Service user involvement in teaching about conflict - an exploration of the issues

Service user involvement is now a well embedded feature of social work
education in the United Kingdom. Whilst many education institutions have
fully embraced the involvement of service users in teaching, there is still
work to be done in more fully engaging with service users who are seldom
heard. This article highlights the opportunities and challenges associated
with innovative work being piloted in Northern Ireland where victims and
survivors of political conflict are routinely involved in teaching social work
students about the impact of conflict on their lives.

Stigmatised Identity and Service Usage in Disadvantaged Communities: Residents’, community workers’ and service providers’ perspectives.

The impact of community stigmatisation upon service usage has been largely overlooked from a social identity perspective. Specifically, the social identity-mediated mechanisms by which stigmatisation hinders service use remain unspecified. The present study examines how service providers, community workers and residents recount their experience of the stigmatisation of local community identity and how this shapes residents’ uptake of welfare, education and community support services. Twenty individual and group interviews with 10 residents, 16 community workers and six statutory service providers in economically disadvantaged communities in Limerick, Ireland, were thematically analysed.Analysis indicates that statutory service providers endorsed negative stereotypes of disadvantaged areas as separate and anti-social. The awareness of this perceived division and the experience of ‘stigma consciousness’ was reported by residents and community workers to undermine trust, leading to under-utilisation of community and government services. We argue that stigmatisation acts as a ‘social curse’ by undermining shared identity between service users and providers and so turning a potentially cooperative intragroup relationship into a fraught intergroup one. We suggest that tackling stigma in order to foster a sense of shared identity is important in creating positive and cooperative service interactions for both service users and providers.

Service-user involvement in nurse education: partnership or tokenism?

Following on from the Francis Report (2013) the need for a framework of service user involvement is required not just in the Health Service but also in Higher Education. There are wide variances globally on the levels of service user interaction and involvement in healthcare education. Health policy internationally has indicated a move towards developing partnerships with service users but to date this still remains elusive with the majority of user involvement consultative in approach. This paper aims to discuss the Health policy background and the current approaches taken in the involvement of service users in healthcare education.

Service user and carer participation in an endoscopy nursing programme

This article reports an initiative to improve students' insight into service user and carer experience of endoscopy, particularly those with severe disability, such as spinal cord injury. This insight has the potential to improve the information provided and level of person-centred care in an endoscopy service. It was evident in the feedback from the classroom encounter that the teaching and learning strategy had a positive outcome, which will allow us to integrate the approach into future curriculum development and delivery, bringing the lived experience from the service user and carer perspective into the classroom. Students engaged in discussion and used their reflective skills to develop sensitivity to those with physical disability and complex needs requiring endoscopy procedures.

Service User Involvement in Assessments:

Increasingly providers of mental health nurse education are required to demonstrate user involvement in all aspects of these programmes including student selection, programme design and student assessment. There has been limited analysis of how nursing students perceive user involvement in nurse education programmes. The aim of this study has been to explore mental health nursing student’s perceptions of involving users in all aspects of pre-registration mental health nursing programme. Researchers completed a number of focus group interviews with 12 ex-mental health nursing students who had been recruited by purposeful sampling. Each focus group interview was recorded and analysed using a series of data reduction, data display and verification
methods. The study confirms many of the findings reported in earlier user participation in education studies. Three main themes related to user involvement have been identified: the protection of users, enhanced student learning and the added value benefits associated with user involvement.

Sexual Health and Sexuality Education Needs of Young People in Care: a Survey of Service-provider Perspectives. Report No 1.

Aim: This study aims to describe the sex education and sexual health needs of young people in care, and to explore the degree to which these needs are being met by current provision.As part of the Department for Children and Youth Affairs ‘National Strategy for Data and Research on Children’s Lives, 2011-2016’, the HSE Crisis Pregnancy Programme (CPP) and HSE Children and Families Social Services Care Group have co-commissioned a team of researchers from UCD School of Nursing, Midwifery & Health Systems, Insights Health and Social Research and Queen’s University Belfast to examine the sex education and sexual health needs of young people in care in the Republic of Ireland. The project is supported by a steering group of senior personnel from both partner organisations (CPP and CFS) and external advisors. The study involves data collection with young people, care providers, birth parents and foster parents using a mixed methods approach. Findings from each stage of the study will be combined to inform recommendations for policy and practice.