Paul Dempster

A literature review on bereavement and bereavement care

ABSTRACT This paper reports on a systematic literature review of bereavement and bereavement care commissioned in Scotland to assist the development of policy and practice there. The review identified and appraised papers from a range of health and social care settings in which bereavement care b a feature, such as acute, hospice- and hospital-based care including neonatal and obstetric, community and primary care, mental health and learning disability services, and care of older people, families and children. Specific types of death were also reviewed, eg traumatic and from (tiseases such as HIV/AIDS. Key messages for each setting and type were identified and overall themes were drawn out which cut across at settings and types. These, it is proposed, represent important features of bereavement and bereavement care which, if acknowledged and addressed, could enhance services.

Bereavement and Bereavement Care in Health and Social Care: Provision and Practice in Scotland

The interview study described here aimed to explore current views of and practice in bereavement care and identify priorities for service development in Scotland. Fifty-nine participants who worked with the bereaved in some way, or whose interest was in bereavement or bereavement care, were interviewed. They represented National Health Service organizations, chaplaincy departments, educational institutions, academic departments, voluntary groups, and other related bodies, such as funeral directors. Transcripts were read repeatedly and initial emerging themes were identified, coded and shared between research team members to reach a consensus for key themes. Priority areas for development were related to raising public awareness, coordination of services, guidance, and professional education.

Management of cancer pain in the community: Perceptions of current UK information technology systems and implications for future development

The objective of this study was to investigate perceptions of how information technology (IT) is currently utilised in the UK in the community management of cancer pain, perceived weaknesses in the current systems and expectations of future IT systems. Healthcare professionals and patient representatives (n = 46) attended two meetings that explored perceptions of current and future provision of managing cancer pain in the community and the potential role of informatics in supporting this. Discussion was captured and analysed using qualitative methods. Analysis revealed that complexities and barriers to the routine capture of data on pain and related distress focused on locations of care, circles of support, and management and sharing of data. In addition, analysis revealed IT was perceived to be peripheral to supporting delivery and organisation. Delegates shared a vision for an IT system that enabled patients to access healthcare provision by effective co-ordination and communication of patient-centred information. Gaps exist between the expectations of users and the ability of current IT systems to support care. While recognising the potential of tele-health solutions, supporting the complexity of multi-agency care delivery in rapidly evolving clinical circumstances was seen as the main challenge. There is, therefore, a need to position IT more flexibly within the delivery model of clinical care if technology is to address current limitations and enhance the community management of cancer pain.

Social Stories™ to alleviate challenging behaviour and social difficulties exhibited by children with autism spectrum disorder in mainstream schools: design of a manualised training toolkit and feasibility study for a cluster randomised controlled trial with nested qualitative and cost-effectiveness components.

BACKGROUND A Social Story™ (Carol Gray) is a child-friendly intervention that is used to give children with autism spectrum disorders (ASDs) social information in situations where they have social difficulties. Limited evidence mainly using single-case designs suggests that they can reduce anxiety and challenging behaviour. OBJECTIVES The objectives were to conduct a systematic review, use this to develop a manualised intervention and run a feasibility trial to inform a fully powered randomised controlled trial (RCT) on their clinical effectiveness and cost-effectiveness in schools. DESIGN This is a three-stage study following the Medical Research Council framework for complex interventions. Specifically, it involved a theoretical phase, a qualitative stage and a feasibility trial stage. SETTING Qualitative interviews and focus groups took place in Child and Adolescent Mental Health Service and primary care settings. The feasibility study took place in 37 local mainstream schools. PARTICIPANTS Fifty children (aged 5-15 years) in mainstream school settings with a diagnosis of ASD were entered into the trial. For each child, an associated teacher and parent was also recruited. INTERVENTIONS The intervention was a goal-setting session followed by a manualised toolkit (including a training session) for creating Social Stories™ for use with school-aged children. The comparator treatment was a goal-setting session followed by an attention control. Both arms received treatment as usual. MAIN OUTCOME MEASURES Outcomes tested as part of the feasibility study included child- and proxy-completed questionnaires for mental health, quality of life and goal-based outcome measures. Adults additionally completed behaviour diaries and the parental stress index. RESULTS The review found that the research into social stories is predominantly based in the USA, carried out in under-12-year-olds and using single-case designs. Most studies either did not follow established Social Story criteria or did not report if they did. The assessment of effectiveness presents a largely positive picture but is limited by methodological issues. There were no adequate RCTs and insufficient information to assess a number of important sources of potential bias in most studies. A manualised intervention was produced using an iterative process between user focus groups and a writing team, and assessed in the feasibility study. All 50 participant groups were recruited within the study time frame. Two outcome measures, the Social Responsiveness Scale-2 and the custom-made goal-based measure, showed high levels of completion rates and appeared to be capturing social and behaviour skills targeted by the use of Social Stories. Detailed recommendations for a full trial are provided. LIMITATIONS Blinding of participants was not feasible. Treatment fidelity was not assessed because of low levels of story return rates. CONCLUSIONS The study showed that a fully powered RCT is feasible with an extended geographical footprint. A large amount of data and information has helped to inform the design of this RCT, which will be the subject of a future research grant application. Future work could focus on developing an appropriate blinded outcome measure for this population. STUDY REGISTRATION This study is registered as PROSPERO CRD42011001440. TRIAL REGISTRATION Current Controlled Trials ISRCTN96286707. FUNDING This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 20, No. 6. See the NIHR Journals Library website for further project information.

Memorialisation and the metaphor of final journeys: workers’ experiences of dealing with death within care homes for the elderly

Abstract Drawing on the literature of metaphor, movement and memorialisation, this paper focuses on the ‘final journey’, a metaphoric journey undertaken by dead residents which allowed workers in care homes for older people to cope with the amounts of death that they encountered working in care homes for the elderly. Movement plays a key role in the routine functioning of the home and the metaphoric language of a journey is an important conclusion to the stages that have preceded this. It helps explain the care that surrounds death and dying within the care home. Workers’ experiences show that there is a rich oral tradition which symbolism, spirituality, ritual and memorial language explain and at the same time creates continuity for workers within care homes. I argue that the search for meaning is important for staff as they continually face the deterioration of people during their working lives. Further, the use of a metaphorical journey is a practical device for remembering and is imbued with the caring culture of the home and the individual beliefs of the workers involved.

Social Stories in mainstream schools for children with autism spectrum disorder: a feasibility randomised controlled trial

Objectives To assess the feasibility of recruitment, retention, outcome measures and intervention training/delivery among teachers, parents and children. To calculate a sample size estimation for full trial. Design A single-centre, unblinded, cluster feasibility randomised controlled trial examining Social Stories delivered within a school environment compared with an attentional control. Setting 37 primary schools in York, UK. Participants 50 participants were recruited and a cluster randomisation approach by school was examined. Participants were randomised into the treatment group (n=23) or a waiting list control group (n=27). Outcome measures Acceptability and feasibility of the trial, intervention and of measurements required to assess outcomes in a definitive trial. Results An assessment of the questionnaire completion rates indicated teachers would be most appropriate to complete the primary outcome measure. 2 outcome measures: the Social Responsiveness Scale (SRS)-2 and a goal-based measure showed both the highest levels of completion rates (above 80%) at the primary follow-up point (6 weeks postintervention) and captured relevant social and behaviour outcomes. Power calculations were based on these 2 outcome measures leading to a total proposed sample size of 180 participant groups. Conclusions Results suggest that a future trial would be feasible to conduct and could inform the policy and practice of using Social Stories in mainstream schools. Trial registration number ISRCTN96286707; Results.

How should we evaluate the impacts of policy? The case of Payment by Results and the 18 Week Patient Pathway in English hospitals

Today, qualitative researchers are framing the relationship between qualitative case studies and quantitative evaluation research in positivist terms, seeking dialogue with quantitative researchers on the basis that qualitative case studies hold the potential to develop theory for evaluation programmes and to improve the quality of quantitative research. In the UK health policy literature, however, recent evaluations of major government programmes of reform have been conducted under largely quantitative and econometric strategies involving baskets of indicators, or routinely collected hospital statistics, set against the central stated aims of the programme: namely, to improve quality, efficiency, responsiveness, output and equity. For the wider evaluation literature, we detail the results of a qualitative case study of the impact of two key reforms, the 18 Week Patient Pathway and Payment by Results, on four English hospitals, demonstrating the value of the positivist frame to evaluation research based on its capacity to improve understandings of cause and effect and to direct quantitative researchers towards better measures and data sets. For the UK health policy literature, we demonstrate the value of qualitative case studies to the policy process in terms of their potential to reduce the risks for serious policy mistakes.