Fiona Morgan

“It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers

BackgroundResearch suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC.MethodsThe priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public.ResultsSeveral grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a “void” created by the withdrawal of professional support after death. Communication and support needs were also identified by participants.ConclusionThis analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues.

NHS Evidence – oral health

NHS Evidence – oral health is one of over 30 specialist collections within the NHS Evidence library. Provided by the National Institute for Health and Clinical Excellence (NICE), NHS Evidence was launched in April 2009 with the aim of providing fast and easy access to evidence-based health and social care information.

54 Interventions and support for people bereaved through advanced progressive illness: a mixed-methods systematic review

Background Palliative care has an important role to play in addressing the bereavement needs of families. A small number of systematic reviews of bereavement interventions are available1 2 but these have typically been restricted to evidence from randomised controlled trials (RCTs) and provide little information on support specifically provided in palliative care settings. Aim This mixed method review identifies interventions and services providing bereavement support for adults bereaved through advanced progressive illness and looks at both the quantitative and qualitative evidence for their effectiveness and utility. Methods Key databases were searched for papers published between 1990 and 2016. Supplementary searches were also conducted. The review includes studies conducted in the UK or comparable countries reporting evaluations of interventions or services delivered to adults bereaved through advanced progressive illness. Study quality was assessed using appropriate checklists. Results Thirty-nine studies met the inclusion criteria for the review including seven RCTs. Evidence from the trials reported improvements in a range of physical and mental health outcomes. However the studies were generally of poor quality with heterogenous populations and outcomes. Evidence from qualitative studies identified a number of positive impacts for service users including facilitating loss and grief resolution restoration and moving on acquisition of coping strategies and social support. Conclusions Whilst the qualitative evidence suggests important benefits of bereavement care for service users this is not matched by strong trial-based evidence. Conclusions that may be drawn on effectiveness are therefore limited by lack of rigorous evaluation studies conducted in this area. References . Forte AL, Hill M, Pazder R, Feudtner C. Bereavement care interventions: A systematic review. BMC Palliative Care2004;3(1). . Currier J, Neimeyer R, Berman J. The effectiveness of psychotherapeutic interventions for bereaved persons: A comprehensive quantitative review. Psychological Bulletin2008;134(5):648–661.

30 Consensus and consistency: development of a core outcome set for evaluating bereavement support in palliative care

Background Palliative care has an established role in the provision of bereavement support. However the research evidence is limited and a lack of consistency in the outcomes used to evaluate services makes it difficult to draw conclusions on their relative effectiveness. Core Outcome Sets (COS) represent the ‘minimum that should be measured and reported’ in research into specific conditions or services making it easier to compare evaluation results [www.comet-initiative.org]. Aim To develop a COS for evaluating bereavement support in palliative care for adults who have lost adults through terminal illness. Methodology Four stages were used to identify agreement on the core outcome Set. Stage 1) a systematic review of qualitative and quantitative papers. Stage 2) a first consensus day of 21 people with expertise in bereavement support (including: adults with bereavement experience providers of bereavement support services researchers) who discussed and amended the outcomes emerging from the review of the literature. Stage 3) a two-round DELPHI survey of 238 bereavement experts. Stage 4) a second consensus day of 23 experts who discussed and reached agreement on the ranking of outcome measures emerging form the DELPHI survey. Results Preliminary analysis of the consensus days and survey results suggest that the most important outcomes to use are ‘ability to cope’ and ‘mental health and wellbeing’. Core dimensions to explore when assessing these outcomes have also been identified. Conclusion Available validated tools are being reviewed for their suitability. Gaps will be highlighted with further work planned to adapt or develop measures as necessary.

56 Rapid review of dissemination strategies and activities as listed in published protocol papers

Background Dissemination of research results is now recognised as an important part of the research process. UK funding agencies and the Health Research Authority require that researchers have a clear plan about how findings should be reported back to patients and members of the public. Wider dissemination using a range of mechanisms specifically targeting the lay community enables the work to have impact outside its academic base and accelerate implementation. The study evolves over three stages: a review of the literature surveys of key stakeholders (research partners study participants members of the public and researchers) and a consensus meeting. Aim To present a literature review of dissemination activities planned by researchers as reported in published protocol papers. Methodology The MEDLINE electronic database was searched to identify study protocols published in 2017 and covering a range of study designs. Results 138 papers published in 2017 were reviewed. Most papers lacked a clear and detailed dissemination plan. In general descriptions of dissemination plans were short and listed a very limited number of stakeholder groups targeted for dissemination and few dissemination channels. A few papers contained additional information on dissemination strategies and activities. Four papers mentioned specific feedback to participants by newsletter or other methods. A full and detailed dissemination plan was present in three protocol papers. Conclusion Most of the previous research has focused on the researchers’ perspective. The guidelines will embed the views of other stakeholders including the general public patient participants in research trials funding bodies and policy makers.

Musculoskeletal care pathways for adults with hip and knee pain at the interface between primary and secondary care: protocol for a systematic review.

BackgroundMusculoskeletal (MSK) conditions are the most frequently reported chronic conditions and one of the biggest causes of disability in the UK. Given the ageing population and the impact of these problems, the demand for MSK treatment will rise. Despite reduced waiting times, MSK pathways have remained variable and inconsistent and need to be improved to meet patient needs. The aim of this systematic review is to understand the evidence for the effectiveness of current models of service delivery and care pathways for adult hip/knee pain patients accessing secondary care for specialist opinions.MethodsMEDLINE, MEDLINE In-Process, CINAHL, Embase, PEDro, PubMed, Web of Science, Cochrane Central and HMIC databases will be searched without language restrictions for papers published from 1990 onward. Websites will be reviewed for grey literature including care pathways, policy documents and unpublished MSK research. Additionally, reference lists will be checked and citations tracked for included studies.DiscussionThe following evidence will be included: research considering care pathways at the intersection between primary and secondary care for adults with hip and/or knee pain in countries with an established clinical pathway. Studies considering generalised inflammatory arthropathy and post-surgical care pathways will be excluded. Screening for included data will be conducted independently by two reviewers. After benchmarking, quality assessment and data extraction will be conducted by one reviewer and checked by a second. A mixed method analysis will be conducted.This systematic review will be used as part of a programme of research to identify best practice for MSK hip and knee pain care pathways. It will provide recommendations for pathway re-design to meet patient needs and ensure efficient streamlining of the patient journey. The review will combine a wide range of information sources including patient and clinician opinion, clinical guidelines, health service delivery research and stakeholder requirements. This should result in a pathway that provides better patient experience and outcomes, whilst meeting the demands placed on the NHS for high-quality evidence-based interventions with efficient use of resources.Systematic review registrationPROSPERO CRD42016035510

Supporting people bereaved through advanced illness: a systematic review of the evidence

Background Palliative care has an important role to play in addressing the bereavement needs of families, although a lack of evidence-based guidance has been noted (Hudson et al., 2012; PeolcPSP 2015). A small number of systematic reviews of bereavement interventions are available, but these have typically been restricted to evidence from randomised controlled trials and provide little information on interventions and support specifically provided for adult populations bereaved through advanced, progressive illnesses (e.g. Forte et al., 2004; Currier et al., 2008). Aim To systematically review the evidence on bereavement support for adults bereaved through advanced, progressive illness. Methods Key databases have been searched using indexed terms and key words for papers published in English between 1990 and 2016. Supplementary searches will also be conducted. The review will include studies conducted in the UK or comparable countries reporting evaluations of interventions or services, delivered to adults bereaved through advanced, progressive illness. Study quality will be assessed using appropriate checklists. This mixed methods review will identify interventions and services and look at both the quantitative and qualitative evidence for their effectiveness and utility. Results/conclusions This review, funded by Marie Curie, will help to identify what type of bereavement support works best for different groups of people, and how such support might be improved. It is also being used to inform the development of a Core Outcome Set for bereavement research in palliative care. This presentation will provide an overview of results, highlight gaps in the evidence base and make recommendations for further research. References Currier J, Nemeiyer R, Berman J. The effectiveness of psychotherapeutic interventions for bereaved persons: A comprehensive quantitative review. Psychol Bull 2008;134:648–661 Forte A, Hill M, Pazda R, Feudtner C, et al. Bereavement care interventions: a systematic review. BMC Palliat Care 2004;3:3 Hudson P, Remedios C, Zordan R, et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care. J Palliat Med 2012;15(6):696–702 Palliative and end of life care Priority Setting Partnership. Putting patients, carers and clinicians at the heart of palliative and end of life care research, 2015. http://www.palliativecarepsp.org.uk/finalreport

The bereavement experiences and support needs of family carers: a supplementary qualitative analysis of free text data from the peolcpsp research priority setting exercise

Background Although grief is a natural process, in which most people learn to adjust without the need for formal support, the relationship between grief and poor mental and physical health is well established (Agnew et al., 2010). Research also suggests that there may be grief experiences and support needs which are specific to family members who have provided end of life care (eg Stajduhar et al., 2013). Methods A research priority setting exercise for palliative and end of life care was conducted, involving a public survey of 1403 people. Respondents included patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. To fully explore the views and experiences reported by participants a supplementary thematic analysis was carried out on the free text data. This presentation reports on themes relating to bereavement. Results Responses demonstrated a relationship between traumatic deaths, feelings of guilt and bereavement experiences. Respondents also highlighted the “void” caused by the sudden withdrawal of professional support to families after death. Communication and support needs which were identified by participants included more effective communication and emotional support around end of life care planning and decision making and continuity of care and follow up support post-death. Conclusion This analysis demonstrates some of the specific effects that caring for a loved one at the end of life can have on grief experiences. Clinical implications are identified, namely improved communication around the time of death and more effective follow up approaches post death. Reference Tapsfield J, Hall C, Lunan C, et al. Many people in Scotland now benefit from anticipatory care before they die: an after death analysis and interviews with general practitioners. BMJ Support Palliat Care 2016. doi:10.1136/bmjspcare-2015-001014

Supporting adults bereaved through advanced illness: development of a core outcome set (COS)

Background A lack of evidence-based guidance on bereavement support (Hudson et al., 2012) and of consistency in the measures used in clinical practice and research to assess bereavement outcomes (Forte et al., 2004) have been identified. The heterogeneity in outcome measures makes it difficult to assess and benchmark clinical services. It is also challenging to combine and compare research results, and draw robust conclusions on effectiveness to inform clinical practice and service delivery. One step to resolving this situation is to develop a core outcome set (COS). This represents the ‘minimum that should be measured and reported in all clinical trials of a specific condition’ (www.comet-initiative.org). Aim This project, funded by Marie Curie, aims to develop a COS that is specific to bereavement in adults following advanced, progressive illness. Methods The COS will be developed through a series of distinct methodologies. First, outcomes utilised in the studies identified by systematic review will be mapped into different domains. Second, an expert consensus day will be convened with up to 30 stakeholders to identify any further outcomes and engage in a consensus methodology (Gallagher et al., 1993) designed to identify the most important. Finally, the list of core outcomes will be further refined through an online Delphi survey with items rated over two rounds to reach consensus on which items should be included in the COS. Results/conclusions The COS will allow research results to be compared, contrasted and combined, and will have additional benefits for clinical practice and the commissioning of services. References Hudson P, Remedios C, Zordan R, et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care. J Palliat Med 2012;15(6):696–702 Forte A, Hill M, Pazder R, Feudtner C. Bereavement care interventions: a systematic review. BMC Palliat Care 2004;3(1):3 Gallagher M, Hares T, Spencer J, Bradshaw C, Webb I. The nominal group technique: a research tool for general practice? Fam Pract 1993;10(1):76–81