January 2016 Companion to report Future planning and advance care planning

Why it needs to be different for people with dementia and other forms of cognitive decline

Contents

Stakeholder Advisory Committee 2 Chair and Lead Investigator 2 Members 2 Staff 3 Methodology 4 Literature review 4 Stakeholder interviews 4 Research aim 4 Research questions 4 Participants 5 Study design 5 Analysis 5 Demographics of interview participants 6 State 7 Setting 7 Participant’s professional background 7 Generous support and Chair and Lead Investigator: contributions of time were made A/Prof Meera Agar by the Stakeholder Advisory Committee who ensured this Director of Palliative Care, project was well informed by Braeside Hospital, HammondCare stakeholders. Members included Conjoint Associate Professor individuals from a wide range UNSW of backgrounds and expertise – including consumer, primary care, Members: aged care, hospital, policy and government to ensure the variety A/Prof Josephine Clayton of settings and perspectives Staff Specialist Physician relevant to dementia specific in Palliative Medicine, advance care planning were taken HammondCare, Greenwich and into account. As the legislative Royal North Shore Hospitals, base and health system differs Sydney across Australian jurisdictions Associate Professor of Palliative members were drawn from a Care, Sydney Medical School, number of states. The Stakeholder University of Sydney Advisory Committee comprised:

2 Stakeholder Advisory Committee

Sue Field Dr Chris Shanley Staff: Adjunct Fellow in Elder Law Manager, Aged Care Research Adele Kelly and Gail Yapp School of Law Unit, Liverpool Hospital Project Officers University of Western Sydney Conjoint Senior Lecturer, University of New South Wales Natalie Ohrynowsky Dr Patrick Kinsella Administration Assistant General Practitioner Dr Craig Sinclair Gippsland Lakes Community Research Fellow Health, Victoria The Rural Clinical School of Western Australia Dr Catriona Lorang (and previously Rebecca Forbes) Jan Van Emden Designated System Based Designated System Based Investigator, HammondCare Investigator, Helping Hand

Dr Joel Rhee Kathy Williams General Practitioner, Consumer representative HammondCare Centre for Positive (former carer) Ageing and Care Consumer Dementia Research Senior Lecturer, School of Public Network Health & Community Medicine, UNSW Alzheimer’s Australia

Companion document - Future planning and advance care planning 3 Methodology

Literature review to seek key stakeholders views and experiences to inform The aim of the literature review consideration of how ACP could was to gather evidence on the be improved for people with effectiveness of strategies to dementia and other forms of inform models of Advance Care cognitive decline across multiple Planning (ACP) that address the health settings. specific needs of people with dementia and other chronic Research questions cognitive impairment and that would be optimally delivered In relation to both advance care and communicated across the planning generally, and specifically different service settings typically in relation to focusing on those encountered. Particular focus with cognitive decline: also included the barriers to the 1. What are the different models implementation of ACP for people for implementing ACP in a range with dementia and their carers of different health and aged and health professionals, and care settings? what facilitates ACP. In gathering 2. What are the participants views the evidence a wide range of on the outcomes which each material was examined: an model can achieve and how well extensive search of the academic have these been evaluated? literature including dementia specific and more generally 3. What do participants identify on ACP; a review of the grey as the enablers and barriers literature including reports and to implementation of various policy documents by federal, state models of ACP? and territory governments; and 4. What are the participants views review of resources and websites on how the uptake of ACP be available to consumers and health improved in a range of different professionals to facilitate ACP. settings? Participants Stakeholder interviews The stakeholders approached Research aim were from organisations across The aim of the consultation Australia. They were selected component of the project was because of experience and/

4 or interest in providing care for for initial coding and category older people, including those with development. Individual points dementia; or their experience with were identified in the transcripts ACP. Purposive sampling was used and organised into themes. The to ensure a wide range of views coding framework was further and experiences were explored. developed as new themes Participants were drawn from were identified. A process of different health sectors including independent review and peer non-government organizations consensus was used to validate the providing residential and/or findings. community care, public hospital The extraction of interview data providers, carers’ organisations, was completed using QSR NVivo Medicare locals, community health (a qualitative data software centres, and community groups. programme) to organise the data. In addition invitations were sent to individuals who have been identified as having undertaken research or had a special interest in ACP. Study design The study design used a qualitative approach, using semi-structured interviews and thematic content analysis. Analysis A coding framework using a template analysis method was used as it enabled the considerable knowledge gained from the literature to form a basis for the coding and this was then developed in light of the responses. (Symons and Cassell 1998). The interview questions were initially used as the basis

Companion document - Future planning and advance care planning 5 Demographics of interview participants

In consultation with the management of change enabling subunit and the stakeholder advisory group, potential stakeholders were identified and then rated according to their urgency, legitimacy and power against two criteria. Evaluating against two criteria the salience of the information they are able to provide, and the ability to influence the project spread we were able to prioritize stakeholder to ensure we focused stakeholder interviews on the groups most important to the project outcomes.

A total of 67 interview and focus groups were conducted, with 82 participants. Details of the participants are outlined opposite.

6 State Demographics Participants were spread throughout Australia, with smaller states/territories over-represented in comparison with population share. Higher participant number in South Australia (SA) compared with relative of interview population was due to the high level of interest in ACP in SA due to recent legislation changes and active interest by participants in this area. participants % of participants % of population

Figure 1. Percentage of participants in each state overlayed on percentage of population

Setting 16 Participants were targeted that worked in the full 14

range of settings were ACP typically occurs. Many 12

participants worked across multiple settings with 10 many academics also having clinical roles in acute or palliative care. 8

6

4

2

0 Primary care Aged care Acute care Palliative care Academic Government Consumer ACP Service Other

Figure 2. Setting in which participants work

Participant’s professional background 25 Profession data was not requested from participants

and was gathered based on specific reference by 20 participants. The relative high proportion of nurses

in our sample is related to the high proportion of 15 nurses in health related settings, many who are no Number of participants longer in clinical nurse roles. Nurses interviewed 10 worked in a variety of settings including as practice nurses, in ACP services, in Medicare locals as well as 5 residential aged care facilities and acute care.

0 Academic Allied Health Consumer GP Nurse Specialist Other health Other non- Unassigned health Professional background Figure 3. Participants professional background

Companion document - Future planning and advance care planning 7 CONTACTS

Cognitive Decline Partnership Centre P +61 2 9477 9225 E [email protected] W http://sydney.edu.au/medicine/cdpc/