Jun 7, 2017 - and an internet search engine (www.google.com). Relevant academic .... clients who need additional or specialist services'. Tasmanian BCN ...
Rural Health and Collaborative Research Symposium 7th June 2017. Tailrace Centre, 1 Waterfront Drive, Riverside, Launceston TAS 7250 Dr Katherine Kent1 Dr Pauline Marsh1 Associate Professor Tony Barnett1 Professor Madeleine Ball2 1. Centre for Rural Health, School of Health Sciences, University of Tasmania, Launceston TAS, Australia 2. School Office Health and Biomedical Science, RMIT University, Melbourne VIC Australia A review of bereavement care standards. Bereavement care standards (BCS) are statements regarding the care of bereaved individuals, to ensure that people who deliver care do so safely, ethically and appropriately. The aim of this review was to generate a summary of current national and international BCS and to identify key features of standards that may be applicable for a multi-disciplinary, multi-level and multisectorial setting. A key word search was conducted in academic databases (CINHAL, Scopus, and Medline), relevant websites (e.g. Palliative Care Australia, Australian Government Department of Health) and an internet search engine (www.google.com). Relevant academic literature on bereavement care standards was identified and reviewed to identify the reported knowledge gaps related to bereavement care standards. Reports detailing bereavement care standards were identified, including ‘palliative care’ standards containing subsection on bereavement care. The key features of the BCS were summarised, including their setting, target audience, and key features, values and principles. The academic literature search revealed a paucity of information regarding the development or application of bereavement care standards in any setting. Limitations identified in the literature include that bereavement care is under-resourced, which compromises the quality and extent of care, and that more research is needed to influence best-practice guidelines, including standards. Review of the BCS highlighted that existing standards are clinically focussed, with few community centred and none relating to a mutli-disciplinary setting. There was little consistency across the resources, with no accepted definition of ‘standards’, inconsistent terminology (e.g. standards vs guidelines) and no common format. Despite the differences in the BCS there was a series of common values identified such as respect, dignity and integrity, and common principles included providing high-quality, collaborative, accessible and adequately resourced care. These features may have the potential to be applied across a multidisciplinary, multi-level and multi-sectorial setting.
Tasmanian Bereavement Care Standards Bereavement care standards are the underlying principles which guide the development and provision of bereavement care. Bereavement care standards are a series of stated principles regarding the provision care of bereaved individuals and families. Standards are generally developed to ensure that people who deliver care and support ‘do so safely, ethically and appropriately’ or they may provide a practical means of achieving principles of good practice. Whilst the term ‘standards’ will be used throughout this report, the term ‘standards’ is synonymous with charters, guidelines, principles, codes, visions or missions. It is widely recognised that there is a broad variety of individuals, organisations, and services that provide bereavement care, and consequently, there are a range of bereavement care standards that are developed with differing intentions. In each setting, the purpose of bereavement care standards may differ, but generally standards can be used for developing high quality services, assessing the quality of existing services and also for uniting and coordinating bereavement care providers. Bereavement care standards may also allow for the evaluation of a minimum standard of operating for a service and allow a variety of services to share standards of quality. In order to develop bereavement care standards in Tasmania, to be adopted by a multi-disciplinary, multi-sectorial Tasmanian Bereavement Care Network, the first and most fundamental step is to evaluate existing standards and the current literature surrounding bereavement care standards. Literature review Literature Searching methods A review was conducted with the main aim to generate a synthesis and summary of current national and international bereavement care standards, and to identify which features of bereavement care standards may be useful in a Tasmanian setting. A detailed literature search was conducted in order to identify existing published (e.g. academic journal articles) and non-published literature (e.g. government reports, websites). A search was conducted in academic database ‘Scopus’, an internet search (via the search engine www.google.com), and a dedicated search in relevant national websites (Palliative Care Australia, Australian Government Department of Health etc.). Literature search results Academic literature The literature search resulting from the academic database search revealed a lack of information regarding the development or application of bereavement care standards. Published literature referring to bereavement care revealed significant gaps in the provision of bereavement care both nationally and internationally, which may be associated with the limited published data surrounding bereavement care standards. The identified gaps in bereavement care includes •
a clear lack of evidence underpinning bereavement care (Breen, Aoun, O'Connor, & Rumbold, 2014)
• • •
difficulties in multi-disciplinary service provision such as variations in training levels (Moira O'Connor, 2016) insufficient funding (Moira O'Connor, 2016) and limited evaluation of current services (Breen et al., 2014).
Taken together, the broad recommendations made in these studies is that there is a need for further research to guide the development of bereavement support practice (Abbott, 2008). In addition, in all countries, further research and policy development has been recommended ( O'Connor, Abbott, Payne, & Demmer, 2009). A Tasmanian focussed study (Eagar, 2004) highlighted the need for regional coordination of bereavement services in Tasmania. Addressing these factors, in turn, may underpin the development of broad standards for united bereavement care. In summary, the gaps in the literature state that in relation to bereavement service provision there is lack of common practice between organisations due to a lack of evidence to support best practice. There is also a lack of coordination between organisations and there is poor service evaluation, due to a lack of validated assessment tools. Overall, more research is needed to inform best practice and more policy is required to unite services. Bereavement care standards documents A number of national and international organisations have set out to identify the underlying principles and more specific standard to guide the development of bereavement support. However, these standards show limited applicability in general in the community, but were more specifically for the palliative care environment. The bereavement care standards and palliative care standards that reference bereavement care are identified in Table 1, and their features are described including their setting, target audience (Table 1). Overall, the standards identified were very clinical, and there was a paucity of documents that were community focussed, or related to ‘client service’. As there are so few specific bereavement care standards, it was difficult to synthesis and summarise their key features as one, but are more easily described according to their target audience: national, organisational, and community. •
National level bereavement care standards
The national documents are generally very long and detailed and aim to provide guidance for improving service provision via ‘standards’. These documents are generally referred to as standards and charters. Some key features include resource allocation, access, and systematic assessment of bereavement care services. •
Organisational level bereavement care standards
Organisational standards are fairly long and generally provided guidance on how staff should perform within their roles. The documents are generally referred to the guidelines or principles. Some key features include coordination of service provision, and improving training and support. •
Community level bereavement care standards
The common terminology used for community bereavement care standards are principles, vision, mission, code of conduct, or code of ethics. The documents are generally short and sweet ( and written in easily accessible wording. Some key features include the provision of ideal and unifying statements.
Commented [BJ1]: Wondering if this should be tied into the background/information section
Development of ‘values’ for a Tasmanian BCN
Several important considerations were identified when scoping and developing Tasmanian specific bereavement care standards outlined in table X. Table X Considerations when developing standards Considerations Specific questions to guide development A well-defined purpose and • Who will the standards target (individuals, organisations, target audience health professionals, community groups)? • Will the developed standards be appropriate for application in a wide range of settings? • If one set of standards is not appropriate for all settings, would multiple standards be suitable? • Will the standards be developed to be ‘minimum standards’, ‘ideal practice’ or ‘norms of practice’? Regional considerations • What regional evidence/accepted social norms are specific to Tasmania? Contributions to • Will the public be invited to comment? development • Who will form a consensus group of professionals? • How will data contributing to the development of bereavement care standards be collected? Ranking of standards • The rankings of statements varied across standards – what is the most important consideration for Tasmania? Reviewing standards
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Access and appropriateness
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How will Tasmanian standards be published, reviewed and assessed/audited? What is the scope for accessibility, and adequate resources? Do the standards need to be developed with the current ‘climate’ in mind?
Development process A short presentation was developed to communicate the main features of current bereavement care standards to participants in the regional workshops (Appendix X). This presentation was supported by summaries and a tabulated list of relevant links to full text documents (Appendix X and X) disseminated both prior to the workshop and collated in the workshop participant pack. It was also highlighted that whilst currently there are no specific ‘bereavement care standards’ for Tasmania, the Tasmanian DHHS via the BAPC initiative has recently consulted widely with the Tasmanian community to inform the development of the Tasmanian Palliative Care Community Charter (DHHS, 2016). It was communicated to participants that the Charter (still in draft form at that time) encompasses key statements that could be ‘translated’ into a bereavement care setting, and that these may be useful in informing the development of Bereavement Care Standards for Tasmania. The main themes identified from this document were: -
Relief Respect, Dignity and Person-Centred Care Good communication Coordination of care Choice
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Fair access Support Help with planning care Cultural respect
A group activity in the workshop was conducted to collect information regarding bereavement care standards based on the following questions: -
What types of standards relating to bereavement care are you aware of? What features of bereavement care standards are important? Do you think that standards will be useful or applicable? o If so, for whom?
These questions were discussed in small groups and the ideas generated by participants was verbally confirmed by a member of the research team and transcribed onto butcher’s paper. At the conclusion of the workshop series, the raw data from the butcher’s paper was transferred into a Microsoft Word document by a research team member from each region respectively. Analysis of workshop findings Data from workshops were summarised, thematically analysed and systematically synthesised to identify key themes and relationships using the following steps: 1. An initial content analysis was performed by one researcher, whereby the raw data was reviewed and all statements/words relating to bereavement care standards or values were identified and listed in an excel spreadsheet for each region. 2. Thematic analysis was conducted by two researchers to identify recurring content across the three regions and to condense several values into an appropriate term (e.g. person-centred and client focussed were grouped together). 3. Themes were reviewed and refined by the research team, until they were considered to best represent the data. 4. Words were compared with PallCareAust core values, the DHHS Charter and the DHHS review of common principles in charters A summary of this data analysis is summarised in Appendix X.
State-wide Practice Standards for the Tasmanian Bereavement Care Network Following the regional workshops and meetings, Tasmanian BCN members developed the following value statement: ‘We will offer services that are safe, person-centred and delivered within an individual’s scope of practice and capabilities; informed by an understanding of referral pathways for clients who need additional or specialist services’. Tasmanian BCN members also developed a list of practice standards to underpin the care they deliver during the workshops and meetings. The list was disseminated to all Tasmanian BCN members including the state-wide BCN management group at subsequent meetings and workshops to gain feedback regarding their appropriateness. Positive feedback from members was received at both the state-wide BCN management group meeting and regional meetings, with only minor
Commented [BJ2]: Wondering if we should put this up in the project approach section instead??
wording amendments suggested. Therefore it was concluded that this list of practice standards was endorsed by stakeholders and hence these have now been adopted as state-wide practice standards for the Tasmanian BCN. This includes: • •
• • • • • • •
Accountability: we are accountable to our clients, caregiver/s, families and the community. Respect: our care will be non-discriminatory and delivered without prejudice. We will treat people as individuals – with empathy, compassion and respect for their culture, values and beliefs, in ways that value diversity and are sensitive to their particular situation. Person-centred care: our clients will be at the centre of care at all times, with support to make their own decisions without pressure from providers to take a particular path. Communication: we will communicate honestly and in ways most likely to be understood by the client. Informed choice: clients will be informed about the options available to them. We will assist them to manage their own situation according to their preferences. Awareness and access: We understand our boundaries and limitations. We will refer clients to more specialist services as appropriate. Evidence based care: we draw on current best evidence in providing care to clients. Safe and ethical practice: we adhere to the codes of practice and ethics of our profession and our organisation. We welcome feedback and reflect on what we do. Advocacy: we advocate for our clients, their families and communities
