NEWS FROM CARESEARCH Welcome to the July edition of @CARESEARCH.

July 2018                                                             www.caresearch.com.au

Welcome to the July edition of @CARESEARCH.
This month we highlight CareSearch happenings and summarise some of the latest
evidence in end of life and palliative care.

NEWS FROM CARESEARCH
Dying2Learn MOOC
We are in to the final week of the CareSearch Dying2Learn Massive Open Online Course (MOOC)
for 2018. The MOOC aims to provide all Australians the opportunity to learn and talk about death,
dying, and palliative care. With more than 1500 participants and more than 13,000 comments, the
MOOC has again shown that people want to talk and talking can make a difference. CareSearch is
proud to provide this opportunity for everyone to have the conversation.

CareSearch Engagement project
Following calls for expressions of interest, we have been particularly pleased to receive a
significant number of nominations in the three categories (aged care; allied health; patients, carers
and families) from across Australia with enormous diversity in professions, roles, organisations,
settings and experiences.
The first two workshops will be held in July for the Aged Care and Allied Health sectors, to be
followed in August with a workshop for Patients, Carers, and Families. This first phase of the
project will provide CareSearch with a list of tasks to implement with the immediate aim of
increasing awareness and use of evidence-based resources in end-of-life and palliative care.
Through this project, CareSearch aims to optimise resource content and delivery for individual
groups by developing a structured framework to guide meaningful engagement. To find out more
and to keep up to date with progress visit the Engagement webpage.

CareSearch: 10 years of providing palliative care evidence to all Australians
This year, we are celebrating our 10th anniversary. For 10 years, CareSearch has been supporting
health practitioners, care providers, and patients, carers and their families to make informed
decisions about end-of-life and palliative care. One example: CareSearch supports and informs the
broader practice community by translating bodies of research into evidence, because single
research studies may be of relevance only to the population studied. Working together with expert
groups, for 10 years we have provided relevant, evidence-based practical guidance and
information that can be accessed by everyone.

Visit our website and twitter page for our campaign activities and upcoming event on the 3rd of
August 2018.

CareSearch is funded by the Australian Government Department of Health.

NEWS FROM THE WEBSITE
CareSearch Blog: Palliative Perspectives
Aged Care Service Needs: ELDAC survey report

A guest blog post by Dr John Rosenberg (Research
Fellow), Karen Clifton (Project Coordinator (ELDAC)), and
Professor Patsy Yates (Head of School), School of
Nursing, Queensland University of Technology.

See More Palliative Perspectives Blogs

CareSearch Review Collection
70 systematic reviews were added to the CareSearch Review Collection in June. They included:

 Jimenez G, Tan WS, Virk AK, Low CK, Car J, Yan Ho AH. Overview of Systematic reviews
  of advance care planning: summary of evidence and global lessons. J Pain Symptom
  Manage. 2018 May 25. pii: S0885-3924(18)30283-5. [Epub ahead of print].

   The aim of this overview of systematic reviews (SRs) was to facilitate implementation of
   Advance Care Planning (ACP) by identifying relevant organisational-, content-, process-, and
   outcomes-related evidence. A total of 80 systematic reviews were included, Australia was
   represented in 38% of the SRs, and the US in 79%. A detailed list of ACP interventions and
   outcomes is provided. Important findings included the differences between Western
   countries’ emphasis on autonomy and self-determinations as the basis for ACP completion,
   and Asian population emphasis on collective, familial decision-making and deference to
   physician authority. ACP completion rates were higher with older age, higher education
   levels, and having more severe health conditions. Evidence supported the central role of
   Physicians in initiating ACP conversations. But, also highlighted persistent barriers to
   communication around ACP and end-of-life, and operational barriers including lack of time
   allocation and legalistic paperwork. Interventions leading to increased ACP completion
   included provision of information or educational material when presented together with
   interactive sessions allowing for discussion with a knowledgeable person. Finally, a lack of
   quality among the available studies was noted, and this together with contextual and setting
   specific outcomes, prompted calls for more studies.

See more reviews on Advance Care Planning

CareSearch is funded by the Australian Government Department of Health.

 Hopwood J, Walker N, McDonagh L, Rait G, Walters K, Iliffe S, Ross J, Davies N. Internet-
  Based Interventions Aimed at Supporting Family Caregivers of People With Dementia:
  Systematic Review. J Med Internet Res. 2018 Jun 12;20(6):e216. doi: 10.2196/jmir.9548.
   Caring for carers of people with dementia is challenging, and the needs of carers are
   increasingly recognised but often not addressed due to limited resources. In this review of 40
   studies covering 31 interventions, the use of internet to close the support gap for informal
   caregivers was examined. Nine studies were randomised control trials, but overall the quality
   of most included studies was low due to small sample size and high attrition rates.
   Nevertheless, five themes emerged as key elements of the interventions: peer support;
   contact with a health or social care provider; provision of information; decision support; and
   psychological support. Each of these is discussed in detail, but peer support offering
   socialisation opportunities was a key attribute of many of the interventions. Group-interaction
   or videoconferencing was found to be more beneficial than public-facing forums and private
   messaging functions. The most promising outcomes were achieved with interventions also
   including online, self-guided psychological support. While calling for more robust studies
   across the field, the review also identified a major gap – a lack of support tailored to different
   stages of the dementia trajectory rather than broad-based interventions.

See more reviews on eHealth

 Evripidou M, Charalambous A, Middleton N, Papastavrou E. Nurses' knowledge and
  attitudes about dementia care: Systematic literature review. Perspect Psychiatr Care. 2018
  May 15. doi: 10.1111/ppc.12291. [Epub ahead of print]

   Based on 19, mostly quantitative studies published between 1997 and 2017, this systematic
   review examined nurse attitudes towards the care of people with dementia. Responses of
   more than four thousand nurses from seven countries, including Australia, were combined.
   The review revealed a level of basic knowledge but major deficits relating to communication
   and care management of people with dementia. Negative attitudes were related to
   symptoms and progression of dementia, and were also associated with less hopeful
   attitudes. More hopeful attitudes were evident among nurses working in community mental
   health, those trained in dementia care, and nurses with ten or more years of experience, or
   age 50 years and over. However, training sessions employing a variety of approaches from
   printed handouts to workshops and videos significantly improved knowledge levels and
   attitudes towards people with dementia. Impact was greatest among younger nurses. This
   review provides insights into the potential of targeted training to improve nurse attitudes
   towards the care of people with dementia, but also highlights major deficits in the absence of
   specific training.

See more reviews on Nurses

CareSearch is funded by the Australian Government Department of Health.

 Marsac ML, Kindler C, Weiss D, Ragsdale L. Let's Talk About It: Supporting Family
  Communication during End-of-Life Care of Pediatric Patients. J Palliat Med. 2018
  Jun;21(6):862-878. doi: 10.1089/jpm.2017.0307. Epub 2018 May 18.

   The aim of this review of 65 studies published to September 2017, was to summarise current
   research on how families communicate with each other and with the medical team when a
   child requires end-of-life (EOL) care. Approximately half of included studies were reported
   from North America, and six from Australia and New Zealand. Only three studies considered
   communication between parents and children with a terminal diagnosis, potentially influential
   factors favouring discussions included being more religious, older age of the child, and the
   perceived awareness of death as a likely outcome. Few studies considered communication
   with surviving siblings, but those that did suggested that they wanted to be informed and
   involved. Most studies considered general EOL communication between parents and
   providers of care, and generally found it to be a challenge with conversations often delayed
   until the patient is actively dying. Barriers to EOL conversations included unrealistic parent
   expectations, and physicians not including parents in decision making or being hesitant to
   initiate discussions. This review again identifies communication as a key component of EOL
   support, but one that health professionals often find challenging.

See more reviews on Communication

 Ruthirakuhan MT, Herrmann N, Abraham EH, Chan S, Lanctôt KL. Pharmacological
  interventions for apathy in Alzheimer's disease. Cochrane Database Syst Rev. 2018 May
  4;5:CD012197. doi: 10.1002/14651858.CD012197.pub2.
   A recent Cochrane review examined if there are any medications that are safe and effective
   for reducing apathy in Alzheimer’s disease. A total of 21 studies, including more than 6,000
   participants, were examined. However, although meta-analysis revealed that
   methylphenidate was associated with improvement in apathy compared to placebo, this
   finding was based on just three studies reporting apathy as a primary outcome, and between
   trial heterogeneity was very high. The remaining studies included apathy as a secondary
   outcome, and it is important to note that in addition to the studies being considered at high
   risk for bias, ‘participants were not selected on the basis of clinically significant apathy at
   baseline’. NPI-apathy subscale was the most commonly used scale, followed by the AES
   and FrSBe apathy scores. Therefore, the authors concluded that based on the low level of
   evidence, and the contraindication for methylphenidate in people with issues such as
   agitation and cardiovascular conditions, caution should be encouraged when prescribing in
   people with Alzheimer’s disease.

See more reviews on People with dementia

CareSearch is funded by the Australian Government Department of Health.

WHAT’S NEW IN THE COMMUNITY?

June 28th, 2018 – Deakin University & Barwon Health Partnership launched a
suite of information about palliative and end of life care for people with
diabetes.
Diabetes is a chronic condition associated with a number of serious complications that people
manage for many years with support from their primary and specialist health care providers. But
knowing when to implement palliative care along with diabetes management to reduce pain and
suffering is not always clear. To support decision making around palliative care and end-of-life
three books were developed with and tailored for:
 Older people with diabetes
 Families caring for older relatives with diabetes
 Health professionals

These publications can be accessed on the AMDA clearinghouse and National Association of
Diabetes Centres (NADC ) websites, as well as on CareSearch.

Palliative Care Outcomes Collaboration (PCOC) Essentials online course
The Palliative Care Outcomes Collaboration (PCOC) recently launched an Essentials online
course for managers and clinicians to learn about the assessment tools, implementing PCOC and
PCOC reports. PCOC also launched a new website to improve the accessibility of information
about PCOC by better targeting messages to patients, families, carers, clinicians, service
managers, researchers and policy makers.

Caring for carers Program - Technology the Key to Caring for Regional
Dementia Carers
Launched on June 11th by Aged Care Minister Ken Wyatt AM, a multidisciplinary national and
international team, coordinated from Central Queensland University, has been funded through the
Australian Government Department of Health Dementia and Aged Care Services Fund to
evaluate feasibility, acceptability and effectiveness of video conferencing to connect carers with
other carers.

Caring for Carers of People with Dementia is appealing to carers from rural, regional and remote
areas around Australia to register their interest in this free program to connect carers with other
carers for support and social interaction.

CareSearch is funded by the Australian Government Department of Health.

National Advance Care Directive Prevalence Study 2018
Are older Australians receiving the medical care that they want, and how well does their care
align with their personal values and preferences?
To help answer this question, Advance Care Planning Australia (ACPA) is leading ground-
breaking research about Advance Care Directives (ACDs) in health care services to evaluate how
well an individual’s clinical care plan aligns with their documented personal preferences.
ACPA is inviting GP clinics, hospitals and residential aged care providers to take part and help
build a national picture of ACD prevalence. Following a successful pilot study last year, the
research involves auditing the health records of people aged 65 and over to determine the
prevalence of ACDs and other advance care planning documentation. Applications close
Thursday 26 July 2018.

UPCOMING CONFERENCES, SHORT COURSES AND EVENTS

Conferences:
 South Australian Palliative Care Conference
  July 20
  Adelaide, South Australia

 2018 Primary Health Care Research Conference
  August 1-3
  Melbourne, Victoria

 Australian Grief and Bereavement Conference 2018
  August 6-10
  Sydney, New South Wales

See more conferences

Workshops:
 Pain Assessment and Management
  July 19
  Carlton, Victoria

 Symptom Assessment and Management
  July 20
  Carlton, Victoria

CareSearch is funded by the Australian Government Department of Health.

 Supporting Those With Families Transitioning To Aged Care
    July 25
    Online, Webinar

   Palliative Care Essentials - 1 Day Short Course
    July 26
    Heidelberg, Victoria

   Palliative Care Resource Nurse Course - Shepparton
    Wed Aug 15, Thu Aug 16, Wed Sept 12, Thu Sept 13, Wed Oct 17 (Bendigo Radiotherapy
    Department), Wed Oct 31 & Thu Nov 1.
    Shepparton, Victoria

 See more workshops.

DISTRIBUTING THE NEWSLETTER

You can print this newsletter for yourself or for staff who do not have access to email. You are
welcome to forward the @CARESEARCH newsletter to others that may be interested in finding
best palliative care research and evidence.

Do not forget you can follow what is happening on Twitter or you can join us on CareSearch
LinkedIn.

August 2018 Newsletter
The next newsletter will be circulated on Monday August 13. If you have any item you would like to
have considered for inclusion, please send details by the first Wednesday in August to
caresearch@flinders.edu.au.

                                                                           Telephone (08) 7221 8233
                                                                           Email caresearch@flinders.edu.au
                                                                           Website www.caresearch.com.au

 CareSearch is funded by the Australian Government Department of Health.