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new directions in research

IPP-SHR, Brisbane Office Central Queensland University Reply Paid 796 Toowong DC QLD 4066 Tel +61 7 3374 1792 or +61 7 3720 8084


IPP-SHR: An International Program of Psycho-Social Health Research


Psycho-Social Research: A Perspective Come of Age


Program Manager’s Report


IPP-SHR logo


The IPP-SHR Organisational Model


The public face


The CQU Healthy Communities Flagship and IPP-SHR


Industry grant collaboration model




In the public eye


Psycho-Social Update


Public lectures and workshops


Austral-Asian Journal of Cancer




Making a difference


The Living Model


The Haematology and Palliative Care booklet







Current research projects


Educational activities


The IPP-SHR team


IPP-SHR Annual Report 05/06


IPP-SHR: The International Program of Psycho-Social Health Research

Psycho-Social Research: A Perspective Come of Age

The International Program of Psycho-Social Health Research (IPP-SHR) provides international leadership

It has been deeply satisfying to watch psycho-social research develop from fragile and humble beginnings to

through research, publication, education, media and newsletter activities in the area of psycho-social health

become an established and essential component of health care research.

research. This SEH faculty initiative, explores a broad range of psycho-social health issues including: the lived experience of serious and terminal illness; haematology and oncology; palliative care; Indigenous health; rural and remote health; mental health; obstetrics; bio-ethics; and the interface between patients and the health

In my work for IPP-SHR I am constantly reminded of the vastness and richness of the present psycho-social enterprise, situated as it is in a global community with so many visions and values in common.

care system. The core aim of IPP-SHR is to ‘make a difference’ by informing policy and service delivery in the

It is a great privilege to be part of a program that applauds the contribution that psycho-social researchers

real world of health care.

have and continue to make. The wealth of insights provided by our research provides an excellent starting

IPP-SHR is an innovative strategic research initiative that charts new directions in unexplored topic areas and incorporates state of the art methodologies and technologies. The innovation and originality inherent in IPP-SHR’s approach to research is expressed through the way in which it applies a collegial, organisationally

point to work towards our major objective: which is to “make a difference” to the lives of those coping with a serious physical or mental illness. This, our first annual report, begins to provide an overview of our efforts in this regard.

flat structure to its teamwork. IPP-SHR’s operation is efficient, productive and user friendly, resulting in high

On behalf of the IPP-SHR team I would like to take this opportunity to express our sincere appreciation to the

tangible outcomes. The focus is as much on the process as on the product.

National Health and Medical Research Council and Central Queensland University for providing the funding and infrastructure to make this international initiative a reality. I would also like to convey IPP-SHR’s sincere appreciation to the CQU administrative staff for their enthusiasm and support. Finally, I would like thank the Office of Research and the SEH executive team for the excellent assistance they provide. It is a considerable privilege in life to be engaged in such meaningful work.

Dr Pam McGrath B.Soc Wk., MA., Ph D

International Program of Psycho-Social Health Research

IPP-SHR Annual Report 05/06

IPP-SHR Annual Report 05/06

NHMRC Senior Research Fellow

Report from the Program Manager

Within its first year, IPP-SHR has produced twenty-one international peer review publications, with twelve more articles submitted or in progress, and has published one book and one book chapter.

IPP-SHR has had an enormously exciting and successful first year. The emphasis has been on establishing

IPP-SHR’s focus is as much on the process as on the product. Considerable effort has been invested in

effective and efficient work processes and procedures, identity and branding, public and media exposure

ensuring efficient and user-friendly organisational structures. This, combined with the use of cutting edge

and internet presence. IPP-SHR has built a solid foundation for sustained research output and continuing

technologies, has contributed to the program’s excellent research output. Within its first year, IPP-SHR has

international leadership in psycho-social health research.

produced twenty-one international peer review publications, with twelve more articles submitted or in

Psycho-social health research is a nebulous concept. Thus, a key consideration in IPP-SHR’s development has been to present a strong visual and conceptual identity. A strong and focused branding has provided an

progress, and has published one book and one book chapter. Additionally, IPP-SHR team members have disseminated research through eleven international and domestic conference presentations.

easily identifiable and understood vehicle to accompanying research dissemination. It is pleasing to note that

It is also pleasing to note the publication and distribution of IPP-SHR’s newsletter, “Psycho-Social Update”.

the frequency in which the IPP-SHR logo is referenced by other organisations working within the psycho-

This quarterly publication reaches an international audience of over 3000 health professionals, researchers

social research arena has increased. This, plus anecdotal reports, confirm the success of the design.

and policy makers. “Psycho-Social Update” represents an international first in the psycho-social health arena

IPP-SHR’s international collaborations and partnerships have gone from strength to strength. This was initiated in the beginning of the year with the signing of a research partnership between IPP-SHR and the

and consolidates IPP-SHR’s position as a world leader. Additionally, IPP-SHR has successfully formed an affiliation with the international peer-reviewed journal, “Austral-Asian Journal of Cancer”.

Regional Cancer Centre in India. Other international collaborations in progress include, an Oncology Service

IPP-SHR’s successful outcomes are a great credit to its talented and dedicated staff. A special thank you goes

in South Africa and an Acute Paediatric Hospital in China. It is also hoped that IPP-SHR will be providing

to these individuals, as well as to the administration and support staff at SEH and the Office or Research.

qualitative research methodology education to institutions in Taiwan and South Korea. In recognition of

It has been an enormous pleasure to work with such a creative team during this exciting time. From these

IPP-SHR’s continuing success and position in the international field of psycho-social health research, the

foundations IPP-SHR will continue to go from strength to strength, providing innovation and leadership in the

International Psycho Oncology Society (IPOS) has granted IPP-SHR membership into their professional

psycho-social health research arena.

organisation. The year has seen the development of successful domestic collaborations and partnerships. Using an IPP-SHR designed industry collaboration and funding model, the program have managed to establish five strategic research partnerships with local and national organisations. The use of this funding and collaboration model has contributed $55,000 to IPP-SHR’s research activities this year.

research publicly available; disseminating research through media activities, and providing leadership in the IPP-SHR Annual Report 05/06

field. As a result of this effort, the program has had twelve successful media releases, with fifty reported

occurrences. The upgraded and dynamic website has experienced growth, and serves in excess of 620 unique visitors per month. The website is indicative of IPP-SHR’s success and profile in the public and research community, with average growth since its inception being 58 percent per month.

Hamish Holewa BSc (CompSci) B Ed, GradDip HEcon Program Manager International Program of Psycho-Social Health Research IPP-SHR Annual Report 05/06

In line with IPP-SHR’s central aim of “making a difference”, there has been a concerted focus on making

Central Queensland University Science, Engineering and Health

further consolidated by the appointment of IPP-SHR Program Manager, Mr Hamish Holewa. In one year

Senior Research Fellow Program Manager

Directed Project W o

IPP-SHR has grown to incorporate twelve part-time research staff.

Research Officers

Organisational Model – IPP-SHR’s collaborative online program management space

Research Officers

W o

Research and Program Officers



awarded a NHMRC Senior Research Fellowship, an Australian first for qualitative research. The program was

br a

Research Officers

ation provision an d a form cce , in Work ss low ject k f ro or P w cted e Research and Program Officers

IPP-SHR in-part attributes its success to the way in which it applies a collegial, organisationally flat structure to

W eb site

In Research and Program Officers

Co ll o

ib le

wa rd Di re c


national and international leadership in psycho-social research. In honour of this work, Dr McGrath was

irected Project


and Health (SEH). The program is the result of over a decade of work by Dr Pam McGrath, who provided

rd D wa

Research and Program Officers


ss yA

Research Officers

Online S phe re –

– Web-based, secu r cess e , pro Ou encr tw y a rd pted Di r


IPP-SHR is a NHMRC and CQU funded research initiative, operating under the faculty of Science, Engineering


ork ew t iv

es sib l e We bs

IPP-SHR’s History

d te

oje Pr

SH IPP- rk o W t c

rd wa

ll lica Pub

The IPP-SHR Organisational Model

ss yA l l lica Pub

its teamwork. The program brings together a team of highly skilled individuals with a wide variety of expertise who collaborate effectively on both the internal work of managing grants and on external relations. The Diagram opposite provides an organisational flowchart that outlines this democratic structure.


Green Ovals represent inward directed activities

Blue Sphere represents IPP-SHR and the website that facilitates collaboration and information sharing

Looking Inwards

Looking Outwards

Green – Inward Directed Project Work

Red – Outward directed Research Work



Innovative Organisational Model – IPP-SHR’s Online Sphere

- Transcribing

- Media

- Coding

- Publishing provides an efficient and productive portal for IPP-SHR team members. Team

- Interviewing

- Legal Contractual Advice

members are able to interface with the website and it is used to assist in facilitating research and

- Database Development

- Editing

collaborations, and the normal running of the program. Document storage, administrative functions and

- Article preparation and Formatting

- Website Work

management of contact databases are handled through the website and provide the most efficient and

- Code and Information Collapsing and Condensing

- Newsletter development

productive method of handling large volumes of data and work across an international team. Due to the

- HREC preparation and submissions

- Promotional Facets

already realised efficiency and productivity increases, it is anticipated that a heavier reliance on server side

- Web based, secure, encrypted work flow,

- Conferences

between IPP-SHR team members

IPP-SHR Annual Report 05/06

Purple Sphere represents the publicly accessible website

technologies will be central to IPP-SHR’s functioning in the future.

information provision and access

IPP-SHR Annual Report 05/06

Red Ovals represent outward directed activities

The IPP-SHR Logo

The Public Face

IPP-SHR’s logo is based on a tessellation of dovetailing segments that give the illusion of a circle of movement is the first point of call for all visitors, interested parties, academics, policy makers,

around a central pivot. This motif provides a diagrammatic representation of the holistic philosophy that

media contacts and staff for IPP-SHR. It is pivotal to IPP-SHR’s presence, research procedures and methods,

informs the present development of the research program. The central pivot is the “individual” and the

and provides an increasingly important method of dissemination of research and information. The website

interlocking segments represent the many aspects of a person’s psycho-social experience.

was established in May 2006, and provides information on all of IPP-SHR’s activities including: staff, projects,

Originally the program of research started out as a singular exploration of the ethical issues associated with chemotherapy for cancer. It was subsequently understood that the palliative care philosophy and practice provided a protection that both deflected and resolved such ethical problems. The two disciplinary perspectives of ethics and palliative care were essentially linked in understanding the individual circumstance.

publications, the “Psycho-Social Update“, affiliations and news activities.

The result is an increased local, national and international profile and reputation of IPP-SHR and CQU as world leaders in psycho-social health research.

To further illuminate the cancer patients’ experience, a psycho-social framework was required. The

Traffic to the website has grown on average by 58 percent per month and serves in excess of 630 unique

tessellations around the central pivot of the human experience of serious illness began to broaden. Spirituality

people. Organic growth in traffic and visitors has been substantially increasing from the inception of IPP-SHR

was the next dimension seen as essential to inform the holistic view. From a focus on the experience of

and the accompanying website. After a focus on Search Engine Optimization (SEO) strategies and content

cancer, the program eventually extended to embrace human challenges such as mental illness.

management, the success of the website is indicative of its standing in major search engine operators. Most

The one consistency in all of the research projects undertaken by IPP-SHR is that, at the centre lies a concern about the human experience for the individual, and this is informed by a kaleidoscope of factors that make up the psycho-social and spiritual dimensions of that experience.

combinations of search terms for IPP-SHR’s expanded acronym (International Program of Psycho-Social Health Research) will return a positive result with IPP-SHR positioned at number one or within the top five results. With IPP-SHR’s position as a leading international psycho-social qualitative research program, new, innovative and dynamic website content; traffic and unique visitors to the website, is expected to increase by four-fold. Coupled, with cross promotional awareness and dissemination of IPP-SHR research - through both the “Austral–Asian Journal of Cancer”, “Psycho-Social Update”, and the recent partnership with a major medical news website - IPP-SHR is in a unique position to maintain and expand exposure of the website.

Website Visitors Per Month 700 600

300 200 100

r be No ve m

er O ct ob


Au gu st

ly Ju

ne Ju




IPP-SHR Annual Report 05/06


Se pt em be

Number of Visitors

IPP-SHR Annual Report 05/06


THE CQU Healthy Communities Flagship and IPP-SHR

Dr Thomas Koilparampil of the Regional Cancer Centre and Mr Hamish Holewa of IPP-SHR in Trivandrum, India

Regional Cancer Centre, Trivandrum, India

Redland Hospital Obstetrics and Gynecology Team

This commitment to community collaboration is demonstrated through the range of community IPP-SHR Research Program

organisations that are actively involved in IPP-SHR’s program. The following is a list of some of the organisations that are presently in collaboration with IPP-SHR as research partners. Please note that this is

Psycho-Social Health Research

Rural and Remote

not a list of research data collection sites.

IPP-SHR partnerships and collaborators


Bayside Health Service District, Redland Hospital, Division of Medicine Bayside Health Service District, Redland Hospital, Department of Obstetrics and Gynaecology Bayside Health Service District, Redland Hospital, Department of Psychiatry Obstetrics Paediatrics

SEH Healthy Communities

Mental Health

Bayside Health Service District, Redland Hospital, Human Research Ethics Committee Bayside Health Service District, Redland Hospital, Department of Accident and Emergency Princess Alexandra Hospital, Department of Haematology Princess Alexandra Hospital, Department of Psychiatry

Palliative Care

Oncology Haematology

Princess Alexandra Hospital, Renal Transplant Unit Fremantle Hospital, Western Australia, Department of Haematology Sir Charles Gairdner Hospital, Western Australia, Department of Haematology

Indigenous Health

Canberra Hospital, Haematology Department Flinders Medical Centre, South Australia Oncology Social Work Australia

IPP-SHR Annual Report 05/06

‘Healthy Communities’


Cittamani Hospice Service Ipswich Hospice Service

As outlined in the above diagram, IPP-SHR parallels and supports the Healthy Communities flagship

Hopewell Hospice Service

program. IPP-SHR successfully role models the process of conducting research through consultation with

Queensland Cancer Fund

the community, and translating community needs and concerns into research projects. IPP-SHR takes

Leukaemia Foundation of Australia

seriously its role of returning this information to the community, and ensuring that it is used to influence

Regional Cancer Centre, Trivandrum, India

service delivery and health policy.

GVI Oncology, Cape Town, South Africa Kings College, London, United Kingdom University of Southern Denmark, Copenhagen, Denmark

IPP-SHR Annual Report 05/06

IPP-SHR (International Program for Psycho-Social Health Research) interfaces with the SEH theme of


Industry Grant Collaboration Model


Another hallmark of IPP-SHR is the successful design and implementation of an Industry Grant Collaboration Model. This model allows respected institutions within the community to access IPP-SHR’s skills, expertise and research infrastructure for original, industry driven research. Research proposals are assessed for their positive potential in terms of both outcomes, and the capacity of organisation to work collaboratively with IPP-SHR. IPP-SHR negotiates resources with industry partners for research projects based on either a matching of funding or in-kind contributions. Requirements for Industry Collaboration:

In its first year, IPP-SHR has created a successful media presence. Aligning with IPP-SHR’s philosophy of making a difference and disseminating research to the public, a strong and committed focus to media has resulted in extensive domestic and international coverage across multiple channels and mediums. The strength of IPP-SHR’s media presence continues to consolidate its position as a world leader in psycho-social health research and reflects CQU’s leadership in supporting this program.

- Mutual interest and enthusiasm for research topic by both IPP-SHR and industry partner

- Potential favourable outcomes

IPP-SHR targets the media through a variety of innovative methods. Research updates and news are released

- Institution support of research and access to research participants

periodically to build a media and public profile for IPP-SHR. Also, special interest and current political and

- Scope and viability of research project. Outcomes and goals are obtainable and are able to be implemented

- Measurable and defined research outcomes

- Extended further research and competitive funding potential

- Industry resource contribution

social events influence IPP-SHR’s media dissemination. An example of this is the successful media exposure recently received by IPP-SHR, following its topical research input into the debate following the tragic death of an Indigenous Elder in the Northern Territory (September, 2006). There have been twelve media releases since June 2006. Currently there have been fifty-two published media occurrences across all spectrums of media delivery including, print, radio, the internet and trade publications. Prestigious media organisations including, ABC national and regional radio, SBS national radio,

The Industry Collaboration model provides an important and defined tool for extending research to

NIRS, and state newspapers have reported IPP-SHR’s media releases. It is exciting to report that IPP-SHR is

communities, furthering emerging fields in research and providing a strong platform to base competitive

utilising the new electronic publishing medium to promote and disseminate our findings. As a result we have

research funding. IPP-SHR has collaborated with three institutions using such a model and has four other

gained significant international exposure through online news portals, such as:,

institutions interested in such shared collaborations. Successful use of the industry grant collaborative model,, and

has contributed an extra $55,000 to IPP-SHR’s research funding this year. It has also translated into two preliminary studies that are now in the process for competitive national funding. 35

As part of IPP-SHR international leadership and reputation within the psycho-social health research industry,


the program pursues and provides assistances to International projects. The level of assistance and support is


collaboration explores two projects and also has assistance and funding from the School of Nursing and Health Studies.

20 15 10 5

IPP-SHR is currently in the process of negotiating projects within South Africa and China. 0 Internet Publications

Print Media

Radio and Audio

Diverse Psycho-Social Health Topics: Indigenous, Palliative Care, Haematology, Questionnaire Validation, Ethics and Values, Mental Health

IPP-SHR Annual Report 05/06

IPP-SHR Annual Report 05/06

IPP-SHR has a current, successful international collaboration with the Regional Cancer Centre in India. The


International Collaborations

on an ad-hoc basis and is determined by the merits, collaborations and viability of the project.


IPP-SHR Media Releases


Vidyya Medical News Service - Today in Vidyya

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RAmEx Ars Medica

Volume 8 Issue 298 Published - 14:00 UTC 08:00 EST 25-Oct-2006 Next Update - 14:00 UTC 08:00 EST 26-Oct-2006 Editor: Susan K. Boyer, RN © RAmEx Ars Medica,Inc. All rights reserved.

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Questionnaires may be harmful to patients (25 October 2006: VIDYYA MEDICAL NEWS SERVICE) -- A study by CQU's International Program for Psycho-Social Health Research (IPP-SHR) has revealed the use of standardised questionnaires in hospice practice negatively impacts upon the experiences and wellbeing of many patients and their carers.

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IN THE PUBLIC EYE – Making the difference

The study, conducted in collaboration with Cittamani Hospice Service, Sunshine Coast, Queensland, involved a qualitative exploration of the impact that using standard information gathering questionnaires had on patients and their carers. The study revealed that the majority of patients strongly disliked using questionnaires and felt that they served staff, rather than client, needs. Patients experienced questionnaire use as inflexible, invasive, tedious, and depersonalising and felt that it pre-determined the information sharing agenda. This was seen to block the development of staff-consumer relationships, which are a cornerstone of successful hospice care. Gathering information through informal talking was viewed as more relaxed, warmer, more personal and friendlier. An advantage of informal conversation was that it was seen to move at the client's pace. Difficult issues were able to be addressed with sensitivity rather than invasive inflexibility. Talking was reported to be as reliable a source of information as questionnaire use. Overall, informal talking and conversation was seen to represent a flexible, sensitive and consumer-focused alternative to standardised questionnaire use.

Colon Cancer Need Info On Colon Cancer? Know Your Options.

Article published in Supportive Care in Cancer (2005, Vol. 13, No. 9, pp. 691-701).

Return to Vidyya Medical News Service for 25 October 2006

In addition to its use of the media, IPP-SHR conducts a broad range of activities that provide exposure to

Gifts for Cancer Patients Hats, sleep caps, awareness pins, lotions, jewelry, bears and more.

its important work conducted at CQU. First and foremost amongst these initiative is IPP-SHR’s newsletter,

Natural Cancer Treatments Regain Hope In Your Fight Against Cancer. Alternative Therapies.

Psycho-Social Update’, which is circulated to a wide national and international audience.

Advertise on this site

Psycho-social Update ‘Psycho-Social Update’ is a newsletter from IPP-SHR, Central Queensland University, circulated four times a year to an international audience of more than 3000 service providers, policy makers and academics with an interest in the human experience of serious illness. The aim of the newsletter is to begin translating the wealth of research findings, available in the academic psycho-social literature, into lay summaries that can


be useful for psycho-social service delivery and health policy. The newsletter also showcases the diversity of excellent psycho-social programs, designed by practitioners and organisations to assist people to deal with the many challenges associated with serious physical and/or mental illness.

Central Queensland University

UniNews Home

Page 1 of 2

- UniNews

CQU Events Calendar

Page: 7 2006 Section: General News Region: Na Type: Ma tional Circulation gazines : 8,158 Lifestyle Size: 19 9.5 Published 7 sq.cms. : Bi-Month ly




Contact Us

IPP-SHR Annual Report 05/06

fruitful visit, IPP-SHR and the As a result of this extremely by the School of Nursing and RCC, with funding provided ting to complete 2 unique Health Studies, CQU, are collaborathe RCC’s catchment area within projects research e qualitativ of Trivandrum, India. aimed at evaluating the end-of-life The first of these projects is both the RCC’s in-patient palliative care currently provided by , an innovative and holistic care department and CarePlus out of the RCC. operated service y domiciliar to augment the palliative care Ultimately, this project strives the RCC by exploring avenues services already available at can better meet the complex through which these services and their families. The findings needs of terminally ill patients as a model of best practice used be turn in can study of this both within India, Australia by other palliative care services, and elsewhere. upon seeks to utilize and The second project being embarked ty-based health communi of ess assess the effectiven with means of providing citizens promotion techniques as a in the important area of cancer health education, especially prevention.

Brief: RC


The broad agenda of psycho-social research is further evidenced by the richness of topics and settings. This issue just hints at the diversity by presenting work as varied as human touch and autism from UK; workplace stress in intensive care units from USA; medical students’ attitudes to suicide from Japan; and, play therapy for hospitalised cystic fibrosis children from Tasmania.

Print News

research links

for Psycho-Social Health The International Program ip of CQU's Dr Pam McGrath, (IPP-SHR), under the directorsh tive research partnership with has forged an exciting collabora the Regional Cancer Centre hospital, cancer Indian a leading (RCC). facilitating the international e This partnership is aimed at e and expertise through qualitativ sharing of ideas, knowledg of particular focus on the areas research co-operation, with and community-based health delivery service care palliative promotion. ted in February 2006, when This partnership was consolida , Hamish Holewa, visited IPP-SHR’s Program Manager Indian state of Kerala, to meet Trivandrum, in the Southern leading Indian oncologist, and a pil, Koilparam Thomas with Dr his colleagues at the RCC.

In essence this newsletter is about ‘making a difference’. So it is with pride we present the work of three excellent organisations – Redkite, Carer Network Inc, and QCF’s cancer course for Indigenous health workers – who all demonstrate original new directions to providing support to those coping with the challenge of serious illness. A considerable joy in working on Psycho-Social Update is the privilege of contributing to mapping the way forward by highlight solutions. It is always humbling to witness the good works of those who find a way to translate their concerns about psycho-social issues into a reality that provides care for others.

and to harness well-established This longitudinal project aims and infrastructure – in the sustainable community resources ent Committees that Managem form of Community Estate this Kerala region – in achieving already exist throughout the aim.

ent will contribute to the developm It is hoped that this project methods of health promotio more effective, community-driven study’s Indian context to the that can be adapted from the developing and developed diverse circumstances of other countries. orde e information technology in IPP-SHR is utilizing innovativ this ble logistical challenges that to overcome the considera tion poses. international research collabora clear facilitating in y necessar This has been especially internationally dispersed researc communication between the timely and reliable team and with regard to promoting management. information sharing and project an invaluable medium which Video-conferencing has provided cation between members of communi has facilitated real-time at t , Australia, and researchers IPP-SHR, located in Brisbane RCC, India. is Manager, Hamish Holewa, Furthermore, IPP-SHR’s Project ent of an interactive presently engaged in the developm Quadrant, designed to streamlin supported software program, research programs and the e qualitativ of ent the managem of project data. facilitate the secure storage




ay 13/9/

helps to forge international Australia-India collaboration Research


The words that most readily come to mind in thinking about the varied contributions to this edition of the newsletter are creativity and lateral thinking. We have exciting examples of individuals from a wide array of disciplines interfacing with qualitative psycho-social research in so many innovative ways. There are stories of geographers and landscape architects using qualitative insights to begin to explore spatial and architectural solutions to challenging health care issues. From Sweden we hear about how qualitative research establishes a connection between ethics and learning. It is fascinating to learn of the many and varied ways in which qualitative psycho-social methodologies are being used across the spectrum of academic disciplines.

Koori M



Koori Mail

Wednesday 13/9/2006 Page: 7 Section: General News Region: National Circulation: 8,158 Type: Magazines Lifestyle Size: 199.57 sq.cms. Published: Bi-Monthly

A sincere thank you to all our contributors for taking time out from their busy working lives to assist with our production.

Brief: RCQU

Happy reading!

IPP-SHR Director, Dr Pam McGrath, NH&MRC Senior Research Fellow


F r o m P r o g r a m s

a n d




The Queensland Cancer Fund (QCF) runs a skills and information course about cancer for Aboriginal and Torres Strait Islander health workers. The program consists of a five-day short course in cancer care. The course includes clinical visits, lectures and workshops from presenters with experience and qualifications in cancer care and the prevention and early detection of cancer. Any Queensland Aboriginal and Torres Strait Islander health worker (male or female) who cares for people with cancer and their families can apply to attend the course. QCF will cover the cost of the course, travel, and accommodation for each health worker.

Off t h e P r e s s @ I P P - S H R

Another form to fill in..... Questionnaires may be harmful to patients A study by the International Program for Psycho-Social Health Research (IPP-SHR) has revealed the use of standardised questionnaires in hospice practice negatively impacts upon the experiences and wellbeing of many patients and their carers. The study, conducted in collaboration with Cittamani Hospice Service, involved a qualitative exploration of the impact that using standard information gathering questionnaires had on patients and their carers. It emerged that a majority of patients strongly disliked using questionnaires and felt that their use served staff, rather than client, needs. Patients experienced questionnaire use as inflexible, invasive, tedious, and depersonalising and felt that it pre-determined the information sharing agenda. This was seen to block the development of staff-consumer relationships, which are a cornerstone of successful hospice care. Gathering information through informal talking was viewed as more relaxed, warmer, more personal and friendlier. An advantage of informal conversation was that it was seen to move at the client’s pace. This was seen to allow difficult issues to be addressed with sensitivity rather than invasive inflexibility. Talking is reported to be as reliable a source of information as questionnaire use. Overall, informal talking and conversation can be seen to represent a flexible, sensitive and consumer-focused alternative to standardised questionnaire use. The use of questionnaires should thus not be automatically accepted as the best practice within hospice or palliative care service provision. Publication Details: McGrath, P., Moore, A., McNaught, M., Greene, A., Atkinson, D. & Palmer, C. (2005) Another form to fill in! Client Reflections on the Hospice Use of Questionnaires, Supportive Care in Cancer. 13, 9: 691-701.

Psycho-Social Update


P r a c t i t i o n e r s

Cancer care course for Aboriginal and Torres Strait Islander health workers





Education/ Course Topics • • • • • •

What is cancer and cancer incidence Cancer treatments and their side effects The impact of cancer Cancer prevention and early intervention Palliative care and grief and loss Cancer networks for health workers and services

F a • • • • •

For further information contact: Anne-Marie Dewar, Project Co-ordinator, PO Box 201, Spring Hill, Queensland, 4004, Australia. Email:



Psycho-social Update

Course Objectives

• •

Demonstrate an understanding of cancer as a disease, cancer staging and how a decision about treatment is made Apply knowledge of cancer treatment to the ongoing support of Indigenous people receiving cancer treatment Volume 1, Issue 2 Demonstrate an understanding of the A Quarte rly Newsle December 2006 tter of IPP-SHR , Centra l Queens impact of cancer and support resources/ WELC land Univer sity, OME Austra lia. services available; Contents Describe cancer prevention and early ‘Psycho-S ocial Update’ is a newsletter detection strategies from Off the Press @ IPP-SHR the Internation Demonstrate and understanding al Programofofthe Psycho.................................... Social for Health .. 1 Editorial ........................ treatment the Research person palliating with (IPP-SHR ), Central .................................... Queensland University, .. 2 From the Coalface ............ cancer circulated four times a year .................................... to an internation al audience Describe a network with other of service providers, 3 Global Update ............ .................................... policy makers and academics Indigenous health workerswith andan health ......4 International Perspect interest in the human ives .................................... experience for of serious professionals ingoingphysical support and mental illness. Journal Profile ............ 6 ............

The newsletter celebrates

the fact that psycho-so

cial research is established WE WOULD LIKE now TOa well HEAR FROM YOU! discipline that is ‘making a difference the real world of health

’ in


............................. 7 What’s On ........................ ................................... Work-in-Progress ............ 8 .................................... .8 r -E-search ........................ .................................. 8

The aim of the newsletter is toinformatio provide an international forum for the sharing of inFurther Featu n of all articles and programs formation on the psycho-social of physical and mental health. Thus, we are res described aspects in the newsletter are available on the IPP-SHR most interested to hear from youweb whether site at: you are a practitioner, consumer, policy Consumer Insights into Mental Illness............... maker, educator or academic working in this area. We are keen to hear about ......3 Knowledge of Suicide in Japan............................ ....5 Improving Outcomes in p-shr.cq the programs you are www.ip developing, the events youu are sponsoring, or the ICU:USA........................ ....5 r Network: Canada.............. search you are publishing. If you have news to share please contact us – Caregive we .......................7 will help to pass the message on! Women’s Birthing Decisions................................... O

ff the Press @ IPP-SHR

Benefits of Participation

in Qualitative

O f f t h e P rResearc e s s h@ I P P - S H R


to cope in similar situations.

Of particular importance to researchers, is the finding that positive research experience s were directly linked by An important ethical concern participants to the nature and duration A consumer’s insights on recovery from mental illness faced of the relationship that they human research ethics committee by many researchers and shared with the qualitative researcher s, is the potential impact . A non-judgmental, sensitive involvement in qualitative that empathetic communication and It has only been in recent years that the notion of ‘recovery’ from mental illness has has begun research upon style on the part of the researcher vulnerable and stressed as well as a willingness t groups. , to gain wide acceptance. It is now considered possible forparticipan individuals to recover fully from to build rapport with participan ts, was seen as imperative in making even the most severe forms of mental illness. Increasingly it is understood that insights the research experience In relation this concern, a positive one. Participants also it has been from people who have actually experienced and recovered to from a serious mental illnessfound are that involveme valued knowing that their in qualitative nt decisions about whether or not to can essential for understanding the ‘recovery process’ and shouldresearch be central to be consideration of ingly beneficial an overwhelm participate , as well as choices about positive experience for participan and interview location and timing, would mental health planning and reform. An IPP-SHR case study provides one such consumer ts coping with difficult life be wholly respected by the situations. These findings researcher . account to direct and guide the development of a recovery based mentalemerged health system. study looking at issues associated from a wider longitudinal The findings published in the case study emphasise respect for the personal strengths thediagnosis withofthe and treatment blood-rela This study demonstrates ted cancers. person with a mental illness, along with the need forchildhood self-advocacy, assertiveness, finding that qualitative research processes can be empowering and beneficial the right emotional support and having choice (to make mistakes as well as beneficial decito participants going through Whilst challenging life experience to feeling nervous sions). Also noted as core to the process of recovery admitting is a therapeutic alliance between aboutthe the prospect of being s. This finding should be interviewed, participants used in advocating for increased access consumer and an open-minded psychiatrist willing to take risks and ablereported to offer that a trusting the experience to research funds and institution of talking about their situations was support for qualitative methodolo al comfortab relationship as a safe place for the expression of emotions. The therapeutic relationship le, rather than distressing gies. Involvement in the study . needs to be based on the desire to provide the consumer with increasingwas control over viewed astheir a positive, supportive experience, due to the opportunit Publication Details: McGrath, own life. y it gave participants to P., Ethical Reflections on share their feelings and experience the Benefits of Participation s, without the sense of burdenin a Qualitative Research ing others. Participation Study, Monash Bioethics Review. also helped normalise participan 22,1: 63-78. experiences and reduced ts’ Publication details: McGrath P. & Jarrett V., (2004) A slab over my feelings head: Recovery inof aloneness. sight from a consumer’s perspective, International Journal of Psychosocial Rehabilitation, In addition to these important 9,1:61-78. personal gains, a primary benefit of participation reported was the altruistic hope that, by sharing their personal stories, participan ts would be able to help ISSN - 18335659 December 2006 Page 3 others Internationa

the choice to make mistakes as well as beneficial decisions... is the hallmark of the a therapeutic alliance between the consumer and psychiatrist...

ISSN - 18335659

December 2006

IPP-SIIR l Program of Psycho-Soci

al Health Research

Page 1

The newsletter celebrates the fact that psycho-social research is now a well established discipline that is ‘making a difference’ in the real world of health care.

IPP-SHR Annual Report 05/06

EDITORIAL Dear Reader,


Public Lectures and Workshops Because of IPP-SHR’s high national and international profile, the program receives regular invitations to collaborate in public lectures and workshops. Top of the list of important engagements this year is the public lecture and practitioners’ workshop by Dr Judith Kaus, President of the American Native Doctors Association, which IPP-SHR will be presenting in collaboration with the Queensland Cancer Fund in December. The event is a direct outcome of Dr Judith Kaus’s interest in IPP-SHR’s work on Indigenous palliative care. Both events will be held in the auditorium of the Queensland Cancer Fund, the workshop is by invitation only, and the public lecture will be widely advertised to a state and national audience of practitioners, policy makers and academics interested in Indigenous health. Further examples of this type of work are the invitation by South East Queensland Division of General Practice to present a workshop on Indigenous palliative care, and Oncology Social Work Australia’s invitation to present a workshop on qualitative methodologies.

Austral-Asian Journal of Cancer

Austral-Asian Journal of Cancer ISSN-0972-2556 is the first international cancer peer reviewed journal published from Asia and Australia. This journal is a multidisciplinary oncology journal covering all aspects of cancer treatment and research. The journal has nine editorial offices. The journal is affiliated to and released

IPP-SHR is a major collaborator with the Austral-Asian Journal of

by Regional Cancer Center - Trivandrum - India, Gunma University - Japan, and Kuwait Cancer Control Center

Cancer (AJC), a well respected multidisciplinary journal that brings

- Kuwait. The main objective of this journal is dissemination of information, on cancer research and treatment,

an international profile to the work of CQU. The journal is profiled on

to the scientists and institutions mainly in developing and underdeveloped countries, at an affordable price.

IPP-SHR’s website and receives increasing interest from the oncology academic community. Dr Pam McGrath, the Australian Editor, deals

IPOS - International Psycho-Oncology Network

with an increasing number of psycho-social manuscripts submitted for

IPP-SHR, which is providing international leadership in the area of oncology/haematology, is a member of,

consideration for publication with the journal.

and supports the work of IPOS. There are mutual links between the IPOS and IPP-SHR websites and the IPOS

As with IPP-SHR’s philosophy of innovation and the use of cutting edge technology, IPP-SHR has negotiated with the AJC to provide

members are on the Psycho-Social Update newsletter mailing list. The recent formation of IPOS is a further indication that psycho-social research is now well established in oncology.

online copies of articles of the journal. IPP-SHR has developed an online community portal for readers of the AJC. Once subscribed, readers are able to view all articles and abstract and participate in the

IPP-SHR Annual Report 05/06

IPP-SHR Annual Report 05/06

online professional forum.



Making a Difference The value of “making a difference” to the lives of people challenged by serious physical and mental illness is

Publications and Conference Presentations

the core of IPP-SHR’s work. As the following list outlines, members of the program place considerable effort into working with the local, state, national and international community in order to translate findings into service delivery and health policy.

Whilst members of IPP-SHR publish extensively in academic journals, the team also prioritises the important

Translating research outcome to community

work of translating scholarly findings into a format that is user friendly for health care practitioners and

As IPP-SHR’s core work is making research outcomes available to the community: the following demonstrates

IPP-SHR are the book on Indigenous palliative care and the booklet on haematology and palliative care.

consumers. With regards to this function, two significant publications that have come off the press at

some of the outcomes achieved. IPP-SHR Newsletter (Psycho-Social Update)

The “Living Model”

Dissemination of both academic and lay information through website to professionals and consumers

This publication presents a “Living Model” to be used in providing best practice palliative care services to Indigenous patients, their carers and

Consultation on research and research methodologies for client driven, specific tailored research projects

their families. This generic model, adaptable to the unique circumstances

Academic publications

of diverse service providers, is informed by the insights of Indigenous

Model development (Indigenous, Haematology, Ethics)

peoples and health care workers of the Northern Territory, Australia. The

Dissemination of information through media

application of this model is driven by eight important principles that should

Translation of findings to tertiary courses

inform palliative care service delivery to Indigenous people: cultural safety,

Graduate and Post-graduate education

equity, autonomy, the importance of truth, humane non-judgmental care, seamless care, emphasis on living; and respect.

Conference presentations Consumer education Lay publications Development of consumer flyers Workshops for service providers

Haematology and Palliative Care: Towards an Integrated Practice With funding from the NHMRC national project grant, IPP-SHR has developed and distributed a booklet for haematology and palliative care. The booklet outlines a research-based model for health professionals. It

Involvement in strategic planning for service organisations

details the process for integrating palliative care and haematology. 10,000

Development of ethical protocols for health care organisations

copies have been distributed to haematology and palliative partners

Publication of regional cancer journal (Austral-Asian Journal of Cancer)

throughout Australia.

Advisory role for health policy development

Haematology and Palliative Care Towards an Integrated Practice


Practitioner research support Expert advice for clinical and support service development

IPP-SHR Annual Report 05/06

IPP-SHR Annual Report 05/06

Consultation and advice for ethics committees

19 The IPP-SHR website is not only IPP-SHR’s most effective instrument for translating academic findings into action, but also provides strong evidence that the program’s message is reaching, and being used by, those at the coalface of service delivery and health policy. The IPP-SHR team receives daily requests through the website and emails from a diversity of national and

International Posters McGrath P. & Holewa H (2006) Another form to fill in! Research findings on the ethical implications of the use of questionnaires, Life, death and human nature: bioethics and biolaw in the twenty-first century, Australasian Bioethics Association, QUT, 5-8th July. National Conference Presentations

international visitors for articles, information, advice, consultation and collaboration. The requests span the full

McGrath P., Moore A., McNaught M., Green A., Atkinson D. & Palmer G (2006) Research findings on the

range of IPP-SHR’s activities from birth to bereavement, including physical and mental health issues.

impact of the use of standardised questionnaires for hospice care, Strength in Working Together, Inaugural Palliative Care Nurses Australia Conference, 8th -9th September, Hotel Y, Melbourne.


McGrath P., Holewa H.& Joske D (2006) Haematology and Palliative Care: An Original model for service

IPP-SHR team members continually work on the process of translating the findings from the program to a

delivery, Strength in Working Together, Inaugural Palliative Care Nurses Australia Conference, 8th -9th

wide range of national and international audiences. Following is the list of presentations for this year.

September, Hotel Y, Melbourne.

International Conference Presentations

McGrath P. & Holewa H (2006) Practical problems associated with Aboriginal Palliative Care service

McGrath P. & Holewa H (2006) Models for understanding end-of-life ethical decision-making in haematology, Life, death and human nature: bioethics and biolaw in the twenty-first century, Australasian Bioethics

provision: A salute to rural and remote nurses, Moving with the Times, Contemporary Issues in Nursing Practice, AARN National Conference, 25-27 October, The Chifley at Lennons, Brisbane.

Association, QUT, 5-8th July.

State Posters

McGrath P., Henderson H. & Holewa H (2006) Ethical decision-making in the real world of acute medicine:

McGrath P. & Holewa H (2006) Indigenous Palliative Care Service Delivery: A Living Model, South East

Insights from research, Life, death and human nature: bioethics and biolaw in the twenty-first century,

Queensland Division of General Practice Symposium, Kingaroy, 4th July.

Australasian Bioethics Association, QUT, 5-8th July. McGrath P., Henderson D. & Holewa D (2006) Ethics and Communication in the Real World of Acute Medicine: Australian Findings, COMET Conference, Cardiff University, United Kingdom, 19th June to 1st July. McGrath P (2006) Obtaining Ethics Committee Approval: Empirical findings on the benefits of participation in qualitative research, Looking to the Future: Opportunities & Challenges for Qualitative Research, IIQM 7th International Interdisciplinary Conference, Surfers Paradise, Gold Coast. Holewa H. & McGrath P (2006) It’s a 5 hour flight to our research site, qualitative research through a website? An evolving interface, Looking to the Future: Opportunities & Challenges for Qualitative Research,


McGrath P. & Holewa H (2006) Palliative Care Research: An Australia-Kerela Collaboration, Regional Cancer Centre, Trivandrum, Kerela.

IPP-SHR Annual Report 05/06

IPP-SHR Annual Report 05/06

IIQM 7th International Interdisciplinary Conference, Surfers Paradise, Gold Coast.



4. McGrath P. & Holewa H (2006) Missed Opportunities: Nursing insights on end-of-life care for

The IPP-SHR team has had a very successful year in publishing. Manuscripts with findings from all of the projects, both in-progress and recently completed, have been accepted by a broad multidisciplinary range of national and international peer-reviewed journals.

5. McGrath, P., Patton M., Holewa H. & Rayner R (2006) The Importance of the ‘Family Meeting’ in Health

The publication of the data from the NHMRC Northern Territory Indigenous Palliative Care project is now

6. McGrath, P., Patton M., McGrath Z., Ogilvie K., Rayner R.& Holewa H (2006) ‘It’s very difficult to get respite out here at the moment’: Australian Findings on End-of-Life Care for Indigenous People, Health and Social Care in the Community, 14,2:147-155. 7. McGrath P., Henderson, D. & Holewa H (2006) Patient-centred Care: Qualitative Findings on Health

now become the largest oeuvre of published research findings on Indigenous palliative care in Australia. The

Professionals Understanding of Ethics in Acute Medicine. Journal of Bioethical Inquiry, In Press

has now published a second edition of the final report from the study. A sign of IPP-SHR’s reputation for leadership is demonstrated by the requests received for authorship of book chapters. Dr Pam McGrath was invited to publish an overview of her work on spirituality and Mr Hamish Holewa has received an invitation to write a book chapter on his information technology leadership demonstrated by his work for IPP-SHR. Book McGrath P. & Holewa H (2006) The ‘Living Model’: Indigenous Palliative Care Service Delivery, Researchman Ltd, Trivandrum, India (ISBN 0977510502) Book Chapters McGrath P. (2006) Defining Spirituality: From Meaning-Making to Connection, In Religion and Psychology: New Research, Ambrose S., (ed)., Nova Publishers, Hauppauge New York, USA. (ISBN: 1-60021-020-1). Holewa H. (2006) Work in Progress, Handbook of Digital Information Technologies: Innovations and Ethical Issues, University of Southern Denmark. Peer-Reviewed Articles (Published and In Press) 1. McGrath P. & Holewa H (2007) A model for end-of-life care in haematology: An Australian nursing perspective, Oncology Nursing Forum, In Press. IPP-SHR Annual Report 05/06

Primary Health, 12,1:56-64.

nearing the end. With seven published, four in press, the collection of articles from the Indigenous study has work continues with three submitted and five work-in-progress articles. Because of popular demand, IPP-SHR


Care Communication with Indigenous People: Findings from an Australian Study, Australian Journal of

2. McGrath P. & Phillips E (2007) Making them more vulnerable: The Irony of Using Questionnaires, Nursing Forum, In Press. 3. McGrath, P.& Holewa H (2007) “End-of-life Care of Aboriginal Peoples in Remote Locations: Language Issues” Australian Journal of Primary Health Care, In Press.

8. McGrath P., Holewa H.& McGrath Z (2006) Nursing Advocacy in an Australian Multidisciplinary Context: Findings on Medicocentrism, Scandinavian Journal of the Caring Sciences, In Press. 9. McGrath P (2006) Exploring Aboriginal peoples’ experience of relocation for treatment during end-of-life care, International Journal of Palliative Nursing, 12,2:75-82. 10. McGrath P.& Holewa H (2005) Special Considerations for Haematology Patients in relation to End-of-life Care: Australian Findings, European Journal of Cancer Care, 20,4 :394. 11. McGrath P. & Patton MA (2006) Relocation for specialist treatment for Indigenous people: Escort Issues, Journal of Rural and Tropical Public Health, 5:16-26. 12. McGrath P., Anastasi J., Fox-Young S., Gorman D., Moxham L.& Tollefson J (2006) Collaborative Voices: Ongoing Reflections on Nursing Competencies, Contemporary Nurse, 22,1:46-58. 13. McGrath P., Holewa H., Ogilvie K., Rayner R.& Patton M (2006) Insights on the Aboriginal View of Cancer, Contemporary Nurse, 22,2:240-254.. 14. McGrath P., Holewa H.& McGrath Z (2006) Practical problems for Aboriginal Palliative Care service provision in rural and remote areas: Equipment, power and travel issues, Collegian, In Press. 15. McGrath, P (2006) ‘The biggest worry….’: Research findings on pain management for Aboriginal people, Rural and Remote Health, 6,3:14-28. 16. McGrath P.& Forrester K (2006) Ethico-Legal Issues in relation to End-of-Life Care and Institutional Mental Health, Australian Health Review, 30,3:286-297. 17. McGrath P. & Holewa H (2006) Ethical Decision Making in an Acute Medical Ward: Australian Findings on Dealing with Conflict and Tension, Ethics and Behavior, 16,3: 18. McGrath P.& Holewa, H (2006) Seven Principles for Indigenous Palliative Care Service Delivery: Research findings from Australia. Austral-Asian Journal of Cancer. 5,3:179-186.

IPP-SHR Annual Report 05/06

“IPP-SHR has had an extremely successful year of publishing, having produced twenty-one international peer reviewed publications, one book, one booklet, and one book chapter”

haematology patients, International Journal of Nursing Practice. 12: In Press.


19. McGrath P (2006) Psycho-social Issues in Childhood Autism Rehabilitation: A Review, International Journal of Psychosocial Rehabilitation, 11,1:

Current Research Projects

20.  McGrath, P., Holewa H.& Kail-Buckley S (2006) ‘They should come out here…’: Research findings on lack of local palliative care services for Australian Aboriginal people, American Journal of Hospice and Palliative Medicine, In Press.


21. McGrath, P., Patton M., McGrath Z., Ogilvie K., Rayner R.& Holewa H (2005) Employment of Aboriginal Health Workers: Findings from an Australian Study, Australian Health Review, In Press. Submitted 1. McGrath, P.& Patton M (2006) Indigenous understanding of hospice and palliative care: Findings from an Australian study. Journal of Hospice and Palliative Nursing, (Favourably reviewed) 2. McGrath P (2006) ‘I don’t want to be in that big city; this is my country here’: Research findings on Aboriginal peoples’ preference to die at home, Australian Journal of Rural Health, (Favourably reviewed). 3. McGrath P (2006) Multidisciplinary insights on the evolving role of the ethics committee in an Australian regional hospital, Monash Bioethics Review (Favourably reviewed)

Start Up

Start Up

Renal Study

• Obtain funding

Questionnaire in Hospice

• Ethics clearance

Volunteers in Hospice

• Establish team



Ethics Study A&E

• Data collection

Birth Study

• Data analysis

4. McGrath P., Pun P.& James S (2006) Psychological and psychiatric sequelae of steroid use in haematology treatments: A review of the literature, Supportive Care in Cancer, Submitted. Work in Progress 1. McGrath P. & McGrath Z (2006) Family care giving for Aboriginal peoples during end-of-life: Findings from the Northern Territory. 2. McGrath P., Jarrett V., McGrath Z.& Holewa H (2006) The Problem of Stigma During End-of-life Care at a Psychiatric Institution. 3. McGrath P. & Henderson D (2006) Ethical Issues in Acute Medicine: Research Findings on the

Steroids in Haematology Evaluation of At Home PC Service Evaluation of Health Promotion Activities in a Community Perspective

4. McGrath P. & Burns K (2006) Family care giving for Aboriginal peoples during end-of-life: Findings from the Northern Territory. 5. McGrath P. & Burns K (2006) Cultural issues for Palliative Care provision for Aboriginal Peoples: Research IPP-SHR Annual Report 05/06

Findings on the significance of clothing, hair and body language.


6. McGrath P. & Burns K (2006) Aboriginal Spiritual Frameworks for end-of-life care: Research Findings on a Multiplicity of Perspectives. 7. McGrath P., Burns K.& Phillips E (2006) Western notions of Informed Consent and Indigenous Culture: Australian Findings at the Interface.



Haematology & Palliative Care

• Dissemination and publication of findings

Indigenous & PC Questionnaire Mental Health Recovery Mental Health Palliative Care Ethics (Acute and General Medicine)

IPP-SHR Annual Report 05/06

significance of end-of-life dilemmas.


As outlined in below, the IPP-SHR program embraces a broad range of topics that all have, at their core, a concern with the human experience of serious physical and mental illness. TOPIC

The development of a model for Indigenous Palliative Care Service Delivery


National Health and Medical Research Council

An examination of ethical decision-making in Accident and Emergency DURATION

2 years

1 year

PROJECT DESCRIPTION This research builds on the successful research project completed as a collaborative project between Central Queensland University (CQU) and Redland Hospital. The previous work titled, ‘The development of an innovative organisational model for responding to ethical concerns in acute medicine: Bayside Health Service District: Acute

PROJECT DESCRIPTION The project developed a generic model for Indigenous palliative care and its guiding principles from the insights of Indigenous people and health care workers interviewed throughout Northern Territory. The model was affirmed through the democratic process of national peer-review by experts in Indigenous health. The generic model stands as a base line of information to be applied by service providers to their own unique circumstances. As every service is different, there will be great variation in the detail used in the specifically developed model for each service. There will be great diversity on such issues as needs, obstacles, resources, geography, populations and service aims. Such diversity will be reflected in different confirmation of factors underpinning the model development for each service. Thus, the view is of a ‘Living Model’ - the generic model providing a firm foundation which can be applied to the needs of the plethora of services involved in providing Indigenous palliative care.

Haematology and Palliative Care – A trilogy of models

Bayside Health Service District

National Health and Medical Research Council

2 years

PROJECT DESCRIPTION The project builds on a program of research initiated by a NHMRC post-doctoral fellowship, examining issues in relation to haematology. The prior research documented problems at the interface of cure and palliation in haematology from the consumers perspective, indicating that most are likely to die in the curative system with a high probability of exposure to an escalation of invasive technology, aware that they are dying but with no knowledge of or referral to palliative care. However, the documented preference is for a home, rather than hospital, death. Prior research indicated that carers can be left with a high level of stress and spiritual pain without

Medical Ward as Case Study’, was funded and conducted under the auspices of a CQU Industry Grant, funded jointly by CQU and Bayside District Health Service. The research aims to expand the previous research to include the Emergency Department and explore the ethical decision processes within such context. Scholarship has indicated the need for a move towards a sociological perspective situated in the ‘real world’ of health care delivery. The challenge for this project is to establish a pilot project that begins to detail one example of an organisational response to documented ethical issues from a consumer and multi-disciplinary perspective. The Redland Hospital’s Medical Services has been chosen as the site for this innovative pilot model. The model will be developed from a series of qualitative interviews with both a multi-disciplinary selection of health and allied health care staff at the hospital and a sample of patients and carers. Data collection has begun.

Examination of seasonal variation in mothers’ decision to undertake a vaginal delivery after a caesarean section

National Health and Medical Research Council

1 year

PROJECT DESCRIPTION This study builds on the work of Dr Grahame Vaughan, Director, Obstetrics and Gynaecology, Redland Hospital, that documents a significant seasonal variation in the decision of pregnant mothers to undertake a vaginal delivery after a prior caesarean section. The research will explore the factors contributing to this seasonal variation through qualitative interviews with a cross section of mothers giving birth at key points of seasonal variation (April/ May and December/January), and the health professionals who cared for them.

bereavement support. The present study has now addressed the problems caused by the lack of integration of category. The present project has established a model of care based on consultation with a multi-disciplinary range of professionals through in-depth interviews and surveys, and consumers through case studies. The three stage

IPP-SHR Annual Report 05/06

process (data collection and interview; identification and development of key issues; iterative report writing) for


An exploration of the psychological and psychiatric impact of steroid use in haematology

IPP-SHR pilot study

1 year


model development is based on the National Cancer Control Initiative’s methodology for Optimising Cancer Care

This a pilot project conducted by IPP-SHR is to begin work in this yet unexplored area and also to obtain foundation

in Australia. The model developed has been submitted to national peer-review by both a multi-disciplinary panel of

data for a major submission. The study is being conducted both at the Haematology Department at Fremantle

professionals and a panel of consumers. The outcome is a thoroughly researched model for integrating palliative

Hospital, Western Australia and the Haematology Department, Princess Alexandra Hospital, Brisbane. The work

care into haematology that includes both the professional and consumer perspective and address the central

begins to document the factors contributing to a negative psychological and psychiatric experience with steroids

questions - 1. What is? 2. What works? 3. What is needed?

for haematology patients.

IPP-SHR Annual Report 05/06

palliative care in haematology through the development of an effective model of care for palliation in this diagnostic


An examination of ethical decision-making in Acute Medicine

Industry Grant

1 year

Evaluation of at home palliative care services in Trivandrum India

School of Nursing

1 year



Titled, ‘The development of an innovative organisational model for responding to ethical concerns in acute

This study extends previous research completed by IPP-SHR and IRPC in February 2006. This study aims to explore

medicine: Bayside Health Service District: Acute Medical Ward as Case Study’, the project was funded and

and analyse factors contributing to effective ‘at home’ care services within the Trivandrum distract, Kerala, India.

conducted under the auspices of a CQU Industry Grant, funded jointly by CQU and Bayside District Health Service.

Domiciliary care is primarily provided by ‘Care Plus,’ a non-government organisation, which provides individually

Scholarship has indicated the need for a move towards a sociological perspective situated in the ‘real world’ of

tailored services such as: at-home care; consumer health information and training; pre-death planning; support

health care delivery. The challenge for this project was to establish a pilot project that begins to detail one example

for immediate and extended family; bereavement support and follow-up; and programs designed to promote

of an organisational response to documented ethical issues, from a consumer and multidisciplinary perspective.

independence for patients and carers.

The Redland Hospital’s Medical Services has been chosen as the site for this innovative pilot model. The model has been developed from a series of qualitative interviews with both a multidisciplinary selection of health and allied health care staff at the hospital and a sample of patients and carers.

Recovery from mental illness

CQU Merit Grant

1 year

Evaluation of community based health promotion activities in Trivandrum India

School of Nursing

1 year

PROJECT DESCRIPTION The project aims to explore an innovative and original model of public and community health promotion through


the use of the central decision making bodies of discrete housing estate, located in Trivandrum, Kerala, India and

This study documents, through qualitative insights, the factors that contribute to recovery from mental illness.

Panchaqaths, Kerala, India. This longitudinal study aims to study the effectiveness of health promotion using the

There are two arms of the research. The first followed up a cohort of patients previously associated with Project

aforementioned model through a variety of qualitative and quantitative methodologies.

300. These individuals previously resided at The Park, a state run mental health institution. The second arm of the research is following up ten highly articulate individuals with a DSM-IV diagnosis who have recovered from mental illness. The study has an innovative focus on the topic of how the experience of coping with mental illness

Exploration of palliative care in a psychiatric institution

CQU research fellowship

3 years

impacts on the meaning the individual is making of life, and whether spiritual issues are related to recovery. As it is documented that one-in-five Australians have a mental illness, the findings have important implications.

PROJECT DESCRIPTION To date there is no research conducted on the interface of palliative care for institutional psychiatric patients. This

Examination of factors that contribute to a successful outcome for renal transplant volunteers

IPP-SHR pilot project

1 year

study, conducted at The Park, Mental Health Institution, Brisbane, addresses this void by providing insights on the obstacles to palliative care delivery in in-patient psychiatric institutions, the similarity and compatibility of the mental health and palliative care philosophy and practice, and ethico-legal issues with regards to dealing with death and dying in a psychiatric institution.

PROJECT DESCRIPTION The project is conducted in collaboration with the Renal Transplant Unit and Department of Psychiatry at Princess Alexandra Hospital, Brisbane.

An examination of the impact of Questionnaire use in hospice care

CQU faculty grant

1 year


1. Decision-making in relation to donation of a kidney by a live donor.


2. Outcomes for the live donor and their family from the act of donating a kidney.

This study is exploring one of the problems faced by hospice workers: that of the increasing pressure to use

The study aims to document factors that contribute to ethically and emotionally sound decision-making by donors that can be predictive of positive donor outcomes post-transplant. Thus, by the end of the study predictive information will be obtained as to what decision-making factors are likely to relate to positive or negative outcomes. This information is essential to ensure the efficacy of the screening process and to ensure donors are adequately informed of the possible consequences of their decision-making.

standardised assessment tools in their work with clients. The study is examining the question of whether the use of a number of assessment questionnaires interferes with or facilitates holistic, compassionate hospice care. To achieve this end, this work focuses on patient’s descriptions of their experience with filling out the questionnaires. There are two groups of patients and careers. The first is engaged in the present practice where questionnaires are not employed. The second group has questionnaires introduced into their care. The research also includes a selection of the hospice workers in qualitative interviews on their experience with administering questionnaires. The results of this research provide insights on the most effective and user-friendly ways of providing hospice care.

IPP-SHR Annual Report 05/06

IPP-SHR Annual Report 05/06

The study aims to examine two key notions in relation to kidney donation:


Extension study of questionnaire use in hospice

IPP-SHR pilot study

1 year

PROJECT DESCRIPTION As the results of the original questionnaire study have been received with much interest by the palliative care community it is considered important to extend the work to include the experience with other hospices.

Educational Activities

IPP-SHR has been approached by hospices in other states of Australia and so will eventually have national data on this topic area.

Effective management of volunteers in a hospice setting

IPP-SHR / Hospice Collaboration

1 year

The IPP-SHR team engages in a wide range of educational activities including running workshops, providing methodological and empirical advice for students and practitioners, publishing on educational methods, doctoral and master thesis examination and supervising an increasing number of post-graduate students.


This year the workshops have concentrated on ethical issues for psychiatry and models for palliative care. The

This study documents, through qualitative insights, the factors that contribute to recovery from mental illness.

findings from IPP-SHR’s research have been incorporated into the course work for postgraduate medical ethics.

There are two arms of the research. The first followed up a cohort of patients previously associated with Project 300. These individuals previously resided at The Park, a state run mental health institution. The second arm of the research is following up ten highly articulate individuals with a DSM-IV diagnosis who have recovered from mental illness. The study has an innovative focus on the topic of how the experience of coping with mental illness impacts

Post-Graduate Supervision IPP-SHR has an increasing number of doctoral students.

on the meaning the individual is making of life, and whether spiritual issues are related to recovery. IPP-SHR has

Judi Parsons, CQU, doctoral student, nursing perspectives on play therapy for children with cystic fibrosis

been approached by Ipswich Hospice, Toowoomba Hospice, and Hopewell on the Gold Coast to explore issues

receiving invasive treatments. Principal supervision. Judi has shared many experiences this year as an IPP-SHR

associated with the involvement of volunteers in hospice work. The study is at the stage of initial dialogue and it is expected that data collection will begin in the new year.

team member, most notable of which was her poster presentation at the 7th International Interdisciplinary Advances in Qualitative Methods Conference: Looking to the Future, at the Gold Coast. Anne Just, CQU, doctoral student, Pain management and compassion, Principal supervision.

The present breakdown of topics in terms of time and resources is demonstrated diagrammatically in the pie chart that follows.

Bree Ryan, CQU, doctoral student, Genetic testing and gender, Associate supervision. Vivian Jarrett, doctoral student, Griffith University, Examination of issues associated with stigma for mental

Haematology Palliative Care Indigenous Issues Ethics Obstetrics Mental Health

illness. Associate supervision. Vivian is also an active team member of IPP-SHR contributing to co-authorship of articles and participating in radio interviews which resulted from the program’s media releases. Kwong Djee Chan, doctoral student, Griffith University, Role of funeral directors in bereavement services. Associate supervision. Kwong Djee is an active collaborator with the IPP-SHR team and is presently exploring extension of the program’s work into Taiwan.

Renal Transplantation

Noritta-Morseu Diop, doctoral student, University of Qld, Recovery support services for Indigenous People in

At-Home Services

Prisons. Associate supervision.


Questionnaire Standardisation Volunteer Management

IPP-SHR Annual Report 05/06

IPP-SHR Annual Report 05/06

Health Promotion Community


The IPP-SHR Team The work of IPP-SHR is carried out by an exciting team of people who bring a wealth of expertise from varied backgrounds. While each team member takes responsibility for discrete aspects of the work, the team also comes together on major projects and functions collaboratively. The high level of perfectionism, professionalism, creativity and goodwill within the team creates a highly satisfying work environment and an excellent esprit de corps.

Bethaney Martin (nee Gerrard) Professional Background Having completed her Senior Certificate in 1996 in Toowoomba, Bethaney enrolled in the local university, The University of Southern Queensland, where she completed a Bachelor of Science Majoring in Applied Psychology. After graduation Bethaney was keen to gain counselling employment in a community setting. To work towards this she did volunteer counselling with the Salvation Army Crisis Accommodation Unit Toowoomba, completed the Lifeline Telephone Counselling Course and then gained part-time employment as a Relief Shelter Worker at the Toowoomba Youth Service Youth Shelter; all the while working part-time as a medical receptionist for two busy Toowoomba Medical Centres. Bethaney then moved to Brisbane where in two years she completed a Bachelor of Nursing (Registered) at the Queensland University of Technology. After finishing this degree Bethaney gained full time employment as a Nursing Officer in the Infectious Diseases High Dependency Ward of the Princess Alexandra Hospital, where she is currently still employed part-time. Bethaney gained contract employment with the International Program of Psycho-Social Health Research (IPPSHR) with the variable roles of Research Assistant and Project Officer. “I remain a very happy part-time employee of IPP-SHR and hope to slowly increase my involvement with this important organisation.” IPP-SHR Role

Professional Background Over the last decade and a half Pam established the broad program of psycho-social research that now forms the basis of the present IPP-SHR program. She was awarded a NHMRC Senior Research Fellowship last year and thus is able to work full time building up the program. Her background is in social work (B.Soc. Wk), bioethics (MA, Ethics) and palliative care (Ph D). Her research examines psycho-social issues in relation to serious illness including work in bioethics, haematology, paediatrics, palliative care, regional and rural health, spirituality, Indigenous health and mental health. She has published four books and over one hundred and twenty articles. She views research as an important instrument for translating insights about the human experience of serious illness into programs for health care service delivery and health policy development. “It is deeply satisfying to be able to work with such an interesting and self-motivated team of people who really make things happen!” IPP-SHR Role Pam provides research leadership for IPP-SHR, obtaining project grants, conducting research, publishing and translating the findings to professional audiences and consumer organisations.

Hamish Holewa Professional Background

IPP-SHR Annual Report 05/06

Hamish has had a background in education and Information Technology and holds a Bachelor of Science (Computer Science) and a Bachelor of Education. Having worked with Pam on many research projects, Hamish left teaching and perused a career in research. To complement is work in the health research setting he is currently completing a Masters of Health Economics and has just obtained a Graduate Diploma in Health Economics. He has also co-authored twelve articles and is currently completing a book chapter. Hamish also has interest in the development of collaborative online research tools.


IPP-SHR Role Hamish provides support, strategic vision and leadership in all aspects of IPP-SHR. He is also responsible for outcome monitoring, budgeting, ensuring effective and efficient method and work processes and time and team management. Hamish also provides guidance and training in research project protocol and procedures, and contributes to the academic output of IPP-SHR. He is also responsible for the public image of IPP-SHR and works closely with Pam on corporate branding and identity, media exposure and electronic dissemination of information. Hamish also provides strategic guidance and leadership in the development of computer based tools and processes to streamline IPP-SHR work processes and communication.

My role of Research Assistant also involves proof-reading literature for publications, assisting with media release preparation and forwarding media releases to nation-wide media contacts, coding interviews using the QSR N6 and Fig Leaf computer programs, uploading articles onto the online Austral-Asian Journal of Cancer and assisting Pam and Hamish with any other tasks that I can be of assistance. As a Project Officer, I have been involved with the NHMRC Haematology and Palliative Care grant. This involved liaison with multiple health professionals to introduce them to the grant, seek their participation, establish interview times and dates and to ensure they receive and sign the appropriate consent forms. As project officer I also had to co-ordinate a nation-wide telephone conference to peer-review the findings and model developed by the IPP-SHR team.

Stasia Kail-Buckley Professional Background Stasia’s formal qualifications are a Bachelor of Social Science in Youth Work and Psychology. She subsequently gained a Diploma in Publishing (Editing). Stasia worked previously in the Information Technology industry as a Quality Assurance-Test Analyst for a period of ten years. She was employed by a document management software company in Sydney managing projects which resulted in the release of major software initiatives to corporate customers. Prior to that, Stasia worked for three years in the UK as a Test Analyst for a major multinational corporation, where she was responsible for the development of an innovative international accounts system. “I have thoroughly enjoyed my role in the IPP-SHR supportive team environment. I have developed the utmost respect for the professionalism and integrity of my new colleagues and I am excited about my continuing involvement with the team in future projects.” IPP-SHR Role I commenced working for IPP-SHR some six months ago as an editor of IPP-SHR publications. I recently collaborated in the co-authorship of a publication concerning aboriginal palliative care.

IPP-SHR Annual Report 05/06

Pam McGrath

During my time with IPP-SHR I have been employed as both a Research Assistant and a Project Officer. As a Research Assistant I have been involved in collating a database, using Microsoft Access, of contacts to be mailed or emailed our quarterly newsletter ‘Psycho-Social Update’ (PSU). The national and international contacts are found through various avenues such as liaison with health departments, conferences, through our web site, recommendations from people aware of our organisation and the internet. The variety of people contained within the database varies greatly, from doctors, social workers, carers, a variety of organisations, and while all have varying interests (from indigenous to palliative care) all interests lie within the psycho-social health field. Maintenance of the database is a continuing task. I am also responsible for batch processing and data manipulation of the contacts and address to ensure postal accuracy and matching with the AMAS database administered by Australian Post. Additionally, my responsibility is to maintain data consistency, integrity and accuracy.


Mrs Elaine Phillips

Tiffany Sagorski

Professional Background

Professional Background

Elaine has worked for forty years in office administration. She has worked for many years with Dr Pam McGrath transcribing interviews from a wide variety of projects including work on children’s leukaemia, spirituality, indigenous health, mental health, palliative care, ethics and hospice. In most cases Elaine is solely responsible for transcribing all interviews on even the major projects. Elaine’s professionalism and attention to detail provide an excellent foundation for IPP-SHR’s qualitative research program.

Tiffany graduated in 2005 from The University of Queensland with a Bachelor of Arts (Psychology) and a Bachelor of Social Science (Health). Her primary interests during her undergraduate study were child and adolescent development and social psychology. Tiffany’s other majors included public health policy and Indigenous health.


I became involved with IPP-SHR through the study for the National Health and Medical Research Council on haematology. My main role was to research health professionals and organisations throughout Australia who would be interested in receiving the booklets (findings of) on this national study.

Elaine is a core member of the IPP-SHR team transcribing the majority of the qualitative interviews that form the basis of the program’s qualitative research. Elaine brings a strong professionalism to her work, treating all of the recorded interview material with the utmost respect. Elaine enjoys the work and is finding the transcribing for the India-Australia collaboration particularly interesting.


“My role with IPP-SHR is in transcribing interviews for various research projects, a job which I find very interesting. I look forward to doing more of this valuable work.”

Zoë McGrath

Mary Anne Patton

Professional Background

Professional Background

Zoë has worked in the human services industry prior to her employment with IPP-SHR. She has just completed her third year of a Bachelor of Social Work at the University of Queensland, where she gained practical experience working with children and families at the Royal Children’s Hospital’s Parent Aide Unit. Her main professional interest is in social policy and its use as a tool for social change.

Mary Anne Patton has a Bachelor of Science (Double Psychology major) from the University of Queensland. She has also completed studies in Journalism and Public Relations. She has worked as a Rehabilitation Counsellor, Research Scientist in IT Human Factors, Career Advisor and as a Media and Web Usability consultant.


Mary Anne has worked as a Media Advisor and Research Officer for IPP-SHR. She has developed and coordinated media contacts and releases. Mary Anne has also completed extensive qualitative research work and analysis and has co-authored numerous articles.


Michael Bouman

Emma Phillips

Professional Background

Professional Background

Michael graduated from the Queensland Institute of Technology with a Bachelor of Law, and was admitted as a solicitor in 1984. He has practiced as a sole practitioner in private practice, and in Community Legal and Government practices. He was a volunteer contributor to a plain English handbook on the law in Queensland, and had been a trainer of Domestic Violence Support workers in metropolitan and country Queensland. He has also had experience in Family mediation and had been a conference chairperson with Legal Aid Queensland.

Emma graduated from the University of Queensland with a Bachelor of Laws (Hons) and a Bachelor of Arts (Government). On completion of her degrees, Emma was the Associate to the Hon. Justice Spender of the Federal Court of Australia. Emma subsequently worked for an international commercial law firm and a boutique Australian law firm, where she has practised industrial relations, employment, discrimination and defamation law. She was admitted as a Solicitor of the Supreme Court of Queensland in February 2004 and of the High Court of Australia in March 2004. She currently works as a solicitor on a part-time basis.

He has also been a volunteer director of a management committee at a Brisbane Buddhist centre, and a volunteer migrant English tutor.

Emma has been actively involved in volunteer work, including performing in fund-raising concerts, a long-standing involvement as a legal volunteer with the Arts Law Centre of Queensland and involvement in the Homeless Persons Legal Clinic and Amnesty International.

IPP-SHR Role I am presently reducing and editing interviews with individuals with a DSMIV diagnosis who have recovered from mental illness in a study on the topic of how the experience of coping with mental illness impacts on the meaning the individual is making from life, and whether spiritual issues are related to recovery. “I have also contributed to the editing and proof reading of a publication on Haematology and Palliative Care – Towards an Integrated Practice”.

IPP-SHR Role Emma’s work for IPP-SHR has been in the role of legal adviser and editorial and research assistant. She has worked for the program for a number of years and has undertaken a diversity of work for the program in that time, including research, drafting of legal contracts, legal advisory work, contributing to articles for publication, enrolment of research participants, conducting interviews, transcribing interviews and proof-reading academic manuscripts.

IPP-SHR Annual Report 05/06

IPP-SHR Annual Report 05/06

Zoë’s primary role at IPP-SHR has been as a project officer on the Industry Ethics Study, being conducted at Redland Hospital’s Accident and Emergency Ward. She has also been involved in preparing IPP-SHR media releases, proofreading IPP-SHR publications and website data entry.



Bo McGrath

Katherine Oligvie

Professional Background

Professional Background

Bo has recently completed a Bachelor of Arts from the University of Queensland. Her majors are in Art History and Media Studies and she would like to pursue further study in these areas.

Kat Oligvie has finished Graduate Entry Social Work at UQ in November 2006, where she gained experience in working in a small community centre and in housing issues for refugees and asylum seekers. Kat has also completed a Bachelor of Arts (Sociology and Media Studies) and has experience in teaching in Japan.

IPP-SHR Role I am currently part of the IPP-SHR research team working under a NHMRC grant on Haematology and Palliative Care. My contribution to this research is in the development of the mailing list.

IPP-SHR role

Claire Powlesland

Dr Kate Burns

Professional Background

Professional Background

Following completing high school in 2001, Claire enrolled in full time study at Queensland University of Technology (QUT) and graduated in 2005 with a distinction in a Bachelor of Social Science. Claire is the secretary of the Redcliffe and District Wildlife Rescue Inc. and has conducted her own research project on Animal Rights and Animal Liberation. She also regularly contributes to the Redcliffe and Bayside Herald newspaper regarding domestic animal and wildlife matters.

Dr Burns is a post-doctoral fellow who has recently completed her doctorate examining issues in psycho-oncology. Kate has a background as a social work practitioner in oncology and extensive experience in research for her work with IPP-SHR.

At the beginning of 2006 Claire enrolled in postgraduate studies at QUT and is due to complete at the end of November 2006, graduating with a Graduate Diploma in Education (Early Years).

Kate is presently contracted to provide co-authorship assistance with a number of ‘work–in–progress’ manuscripts from the Indigenous palliative care study.


Also, IPP-SHR has made a submission to Endeavour India-Australia for a fellowship for Kate to undertake research for the program on family support issues in Trivandrum, India.

Kat’s involvement with IPP-SHR has been as a project officer working with the NHMRC-funded research project team that looked at issues around palliative care for Indigenous people in the Northern Territory. Kat had extensive focus on qualitative methodology and coding aspects of this study.


During 2006 I have worked with IPP-SHR completing and editing the Care Search Project Research Studies Register: Registration Proforma. I have collated information from the IPP-SHR website in regards to each research project and transferred this information into the Proforma format. I have also located a number of publications for the NHMRC research study, and created a hyperlink for each document, so as each document can be readily accessed.

Sheena Ravindran Professional Background


IPP-SHR role As the Project Officer of the proposed India-Australia Collaborative projects, Ms. Sheena will supervise and manage the projects with the help of the chief investigators in Australia and India.

IPP-SHR Annual Report 05/06

IPP-SHR Annual Report 05/06

Ms. Sheena Ravindran is presently the Office Manager and Editorial Assistant of Austral-Asian Journal of Cancer ( www.ajcancer. org ). Ms. Sheena is a post-graduate in English Literature and is presently doing graduation in law as part time student. She is having excellent communication skill and gets along with colleagues very nicely. Ms. Sheena is managing the Editorial Office of AJC and is assisting editorial work of the selected articles, language corrections, helping peer reviewing, co-ordinating the academic and publication work of Austral-Asian Journal of Cancer. As the Editorial Assistant of AJC, Ms. Sheena is keeping in touch with other Editorial Offices located in different countries and co-ordinating their academic activities.


IPP-SHR Annual Report 2006  

IPP-SHR Annual Report 2006

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