Dementia conceptualizations: New Zealand media

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Re-framing the dementia tsunami narrative

Dementia is often portrayed in public discourse as a global tsunami, giving the impression that dementia is an unstoppable and unpreventable illness engulfing society.  Correlated with the above portrayal is societal attitudes towards dementia.  A widely publicized poll suggests that people are more fearful of developing dementia than cancer.   Recent studies however indicate that while certain risk factors are inherent, a large proportion (35%) of dementia risk factors are modifiable across the life course and which if addressed, could reduce the risk of dementia.

  • Modifiable risk factors in early life (8%):
    • Education: Increased time spent in education, at least until secondary school completion.
  • Modifiable risk factors in midlife (12%):
    • Hearing loss (9%)
    • Hypertension (2%)
    • Obesity (1%)
  • Modifiable risk factors in later life (15%):
    • Smoking (5%)
    • Depression (4%)
    • Physical inactivity (3%)
    • Social isolation (2%)
    • Diabetes (1%)

While dementia is often thought of as an individual’s disease, dementia has to also be considered in relation to the wellbeing of family carers, who provide the backbone of support to people living with dementia.  At the national level, formulation of policies for good dementia care needs to be tailored to the needs of both the individual with dementia and their families within their cultural contexts.  Some current work in this area include appropriately designed living facilities for people with dementia and incorporating cultural knowledge around elder care.

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HIV in the South Pacific: A societal response

The HIV status of the South Pacific region is generally discussed within the context of the wider Asia Pacific region.  Given the larger population size in Asia and the larger number of HIV cases, the South Pacific region is often overshadowed, with less attention paid to the specific needs of the people of the region.  This is a significant concern as findings indicate that in the South Pacific region HIV is increasing.  

The South Pacific region is categorized into three tiers by HIV prevalence: The first tier comprises of Papua New Guinea (PNG), which has the most number of cases in the region.  This is followed by Fiji, French Polynesia, New Caledonia and Guam, which collectively form the second tier.  Other small island countries form the third and last tier, with few known cases of HIV.  

Poor health infrastructure, and particularly in the case of Fiji and PNG political instability and low national budgets means that the islands will be unable to cope with a rapid increase in the need for HIV treatment.  Hence, a major area of concern is raising health literacy around HIV and at the same time, improving societal empathy and compassion towards those living with HIV.    

UNAIDs Commission has recognized the importance of whole community involvement in HIV/AIDs prevention, as articulated in the Multisectorial Combination Prevention (CP) Framework.  The CP framework recognizes the need to involve communities in HIV prevention.  In other words, health literacy needs to be community tailored.  Within the South Pacific region, UNAIDS cites national media as a key player in facilitating this multisectorial approach:  The South Pacific media have “the potential to play a more effective role in covering human rights issues and promoting HIV prevention
and awareness, and in bringing about attitude change in the region” (UNAIDS, 2009: 74).

The South Pacific media have responded to the challenge.  Some of the key areas of heightened media action in HIV awareness are:

  • A greater inclusion of sociocultural determinants in the reporting of HIV examplars and their families provides a more balanced and less sensationalized representation of PLWHIV
  • Positive portrayal of HIV advocates in the news has positively influenced societal attitudes and contributed to PLWHIV’s coping strategies and stigma management
  • Local and regional theatre productions have allowed for a greater reach with communities and schools

 

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Public arenas methodology: Engaging with societal health conceptualizations

Within the Pacific context, qualitative methods of data collection such as individual interviews, focus group interviews and talanoa are well utilized.  Another increasingly popular method of data collection is the analysis of media discourse 

Local news media play an essential role in the dissemination of health-related information.  Women, indigenous and rural communities rate media as their main source of information on Non-communicable diseases (NCDs), above that of information received from medical practitioners. 

A framework for media discourse analysis is framing:  Media framing is a selection process, whereby an event is problematized and related to other events in the world, made into an issue from a particular viewpoint, with a cause, effect, possible solutions and quite often has moral judgments implicitly or explicitly associated with it.  Framing is therefore an important tool for taking complex issues and anchoring these issues within the audience’s underlying schemas.  

How an event is presented in media influences the manner in which the audience perceives and behaves towards the event.  Extant literature demonstrates the impact news frames have on audience’ interpretations, recollections, attitudes, evaluations and decision making on national issues and policies.  Hence, close examination of media’s health framing provides an important means of engaging with societal knowledge, attitudes and behaviors around health and such studies have implications for health education, policy developments and health governance laws.  

 

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Data collection methods in the Pacific context

Research of the people, by the people, for the people of the Pacific

The Pacific region has a rich oral heritage, that can be seen in Pasifika narratives, songs and dances.  A specific form of interview, Talanoa Methods has been specifically developed for research in the Pacific region.  Talanoa is a culturally relevant and respectful methodological approach, based at the intersection of Critical Theory, Kaupapa Mäori Theorising and Tongan Kakala framing. Some of the key proponents of the Talanoa method are Nabobo-Baba and Timoti Vaioleti

The methodology is situated within cultural worldviews, knowledge systems, lived experiences, and values of the people being represented and re-presented through research.

Talanoa is at times equated with face-to-face interaction methodology.  However, Talanoa is more than that.  Talanoa respects cultural conceptualizations of how things ‘should be’.  It is about being respectfully aware of cultural protocols and practices, values, ethics, philosophies, and principles around knowledge sharing.  It is also about having the cultural understanding of what/when/where/how/why certain knowledge can and can’t be made available to different interlocutors.

Talanoa is a collaborative storytelling practice, which ranks from informal<——->formal and can occur at all levels of society.  Talanoa is about knowledge sharing and power sharing between researcher and participant(s).  Importantly, Talanoa is about reciprocity and continuity of relationship: end of research does not mark the end but the beginning of a relationship between the researcher and participant(s).

Summary of Talanoa epistemology

  • Accountability: Meaningful reporting and meaningful feedback
  • Win/win: Research should benefit the researched community
    Reciprocity: Giving back to the immediate participants and the wider community in both the short-term and long-term
  • Cultural sensitivity: Taking into account participants’ cultural values, knowledge processes, protocols around knowledge sharing
  • Insider Perspective: Researcher fluency in the language to be able to verify culturally grounded concepts
  • Ethical approval: Inform the people about the research, have the people’s permission to do the research
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Acknowledging, embracing, practicing Pacific worldviews on a global scale

Research into Pacific people’s health conceptualizations is of benefit to both the local populations as well as contributing to the global efforts to address societal health outcomes.  Within the immediate context, research into Pacific perceptions of health and wellbeing provides a valuable avenue for acknowledging the wealth of knowledge Pasifika people have.  Such research also provides a culturally respectful and relevant foundation from which to address population health within Pacific islands and their diasporic communities.

Growing evidence also points to the importance of social ties for better health  and increased life span.  The essence of a Pacific community rests on collective identities and communal practices.  As such, Pasifika worldviews of social ties and collective efficacy can play an integral role in improving population health outcomes globally.

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How to be health literate

Health literacy refers to our ability and motivation to access health resources, interact with it (understand, evaluate, use) and thereby take ownership of health decisions that concern us (WHO, 1998, p. 10).  Our health behavioural decisions are influenced by our cultural and societal norms and expectations, as well as the economic and environmental structures within which we live.  Health literacy efforts must therefore utilize more than communication and education to bring about positive behavioural and attitudinal changes.

 

Why is it important to be health literate?

Health literacy applies to both disease prevention and disease care.  Being health literate enables us to:

  • Read, evaluate and make use of health-related information in magazines, television and radio programs, and brochures from health organizations
  • explain symptoms to medical professionals
  • discuss health concerns with medical professionals, such as disease risk factors, prevention and management strategies, side-effects of medication and the use of traditional and/or herbal remedies for treatment
  • understand and follow medical professionals’ recommendations
  • read medication labels and take the appropriate dosage
  • fill out health insurance forms

Being health literate is of benefit to us as individuals to make decisions about our own health and also to provide support and care for others, such as children and the elderly and to help them make health-related decisions.

 

Effects of low health literacy

Research across a range of cultural settings, ages and socio-economic demographics show that low health literacy is linked to:

  • Lower knowledge about the disease causes and effects
  • Lower knowledge about practical steps to prevent or manage the disease
  • Low self-rating of health status
  • Increased use of medical services
  • Patients with low health literacy are more likely to have severe disease associated complications and are more likely to need hospitalization.
  • For diabetics, poor health literacy is further associated with poor management of blood pressure and blood sugar levels and increased prevalence of retinopathy.

 

How to become more health literate

To become more health literate and thereby make better informed health-related decisions, you can:

Ask your health professional questions: your health is your priority, and if you are not sure about any aspect of your healthcare, you should ask

Ask your health professional to slow down if they are speaking too fast.  Similarly, ask them to speak up if they are speaking too softly.

Repeat what you have understood: health professionals sometimes use terms and phrases that are difficult for us to understand.  Tell your health professional what you understood and they can clarify if there is a misunderstanding.

Support yourself: If you are more comfortable in a language other than English, see if you could take an adult with you who could be your interpreter and also a support person.  You can ask (or have someone ask on your behalf) the health centre to organise a free interpreter for you.

Expand your support network: Ask your health professional for support groups and organizations that you could contact and have a wider support network.  Research shows that having a strong positive and empathetic support network can improve our confidence and outlook on life as well as contribute  to faster recovery from illnesses.

 

Research on health literacy consulted for this article

Centers for Disease Control and Prevention. Improving Health Literacy for Older Adults: Expert Panel Report 2009. Atlanta: U.S. Department of Health and Human Services; 2009.

Egbert, N., & Nanna, K. M. (2009). Health literacy: Challenges and strategies.The Online Journal of Issues in Nursing14(3).

Gazmararian, J. A., Williams, M. V., Peel, J., & Baker, D. W. (2003). Health literacy and knowledge of chronic disease. Patient education and counseling,51(3), 267-275.

Hewitt, M. (Ed.). (2011). Improving Health Literacy Within a State:: Workshop Summary. National Academies Press.

Improving Your Health Literacy. September 2010. Agency for Healthcare Research and Quality, Rockville, MD. http://archive.ahrq.gov/news/columns/navigating-the-health-care-system/090710.html

Kim, S., Love, F., Quistberg, D. A., & Shea, J. A. (2004). Association of health literacy with self-management behavior in patients with diabetes. Diabetes care27(12), 2980-2982.

Kutner, M., Greenburg, E., Jin, Y., & Paulsen, C. (2006). The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy. NCES 2006-483. National Center for Education Statistics.

Nutbeam, D. (2000). Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health promotion international15(3), 259-267.

Omachi, T. A., Sarkar, U., Yelin, E. H., Blanc, P. D., & Katz, P. P. (2013). Lower health literacy is associated with poorer health status and outcomes in chronic obstructive pulmonary disease. Journal of general internal medicine,28(1), 74-81.

Schillinger, D., Grumbach, K., Piette, J., Wang, F., Osmond, D., Daher, C., … & Bindman, A. B. (2002). Association of health literacy with diabetes outcomes. Jama288(4), 475-482.

World Health Organization (WHO) (1998) Division of Health Promotion, Education and Communications Health Education and Health Promotion Unit. Health Promotion Glossary. World Health Organization, Geneva www.who.int/hpr/NPH/docs/hp_glossary_en.pdf

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Storytelling culture in the Pacific

Please click on the image below to enlarge.

 

manawatuguardianfarzana

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Strong Pacific focus for postdoctoral researcher

Pacific focus
Research focused: Farzana (left) with her mentor Julie Barbour (right).

Oceanic linguistics specialist Dr Farzana Gounder has been awarded a 2013 Postdoctoral Fellowship Award by the Faculty of Arts and Social Sciences which will allow her to dedicate a year to research focusing on narrative and identity constructions in the Pacific.

Strong Pacific research focus

The Fijian Indian was drawn to the University of Waikato because of its strong Pacific research focus, particularly within the Linguistics programme.

“Being a person from and of the Pacific, I have a strong passion for contributing to scholarly knowledge on the diverse and unique narrating features found within the Pacific region, an area that is research-rich, yet currently understudied,” says Dr Gounder.

Plans whilst at Waikato

During her one-year term here at Waikato, Dr Gounder will be focusing on editing a volume with John Benjamins, titled Performing Narrative Identities in Oceania in the prestigious Studies in Narrative (SiN) series. The book has attracted considerable interest, with both national and international contributors.

Dr Gounder will also be writing journal articles, a book chapter, speaking at national conferences and leading seminars and workshops at the University.

“This award has given me a wonderful opportunity to immerse myself in research. It’s stimulating to be part of such a strong culture, surrounded by people who are so passionate about their areas of expertise,” says Dr Gounder.

Her mentor is Dr Julie Barbour, an accomplished linguistics researcher who currently holds a Marsden grant to study the mood systems in the oceanic languages of Vanuatu.

FASS Postdoctoral Fellowship

The FASS Postdoctoral Fellowship is a one-year award funded by Strategic Investment Funds. The Fellowship aims to attract emerging international researchers and to provide pathways for completed PhD students to enhance their capacity to move into an academic career position.

The position attracted a large number of applicants drawn to particular research foci in units, centres or institutes within the faculty, and by the international profile of many of the research staff.

In carrying out research at the University of Waikato, Dr Gounder intends to build relationships with other researchers in oceanic studies on campus, nationally, and internationally for further collaborations.

“My research for the foreseeable future will be in oceanic linguistics, as the Pacific is where my own identity lies.”

From: http://www.waikato.ac.nz/news-events/media/2013/08strong-pacific-focus-for-postdoctoral-researcher.shtml

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BOOK LAUNCH CEREMONY AT IPC

On Wednesday 1 February, IPC had great pleasure in celebrating the launch of a book written by one of its lecturers, Dr Farzana Gounder, as an outcome of her Doctor of Philosophy studies at Massey University. The event was attended by Farzana’s family, friends and colleagues as well as supervisors and colleagues from Massey University and the wider Palmerston North community.

The book, Indentured Identities, resulted from a book contract following the successful completion of Farzana’s PhD in late 2011. Dr Gounder explored the “themes of indenture, migration and identity formation” of cases taken from some 45,000 Indians who went to work in Fiji between 1879-1916, mostly on sugarcane plantations, and then chose to settle there. The book was published in USA.

One of Dr Gounder’s PhD supervisors, Dr Martin Paviour-Smith, commented that the book “has been published in the most prestigious series of books on narrative studies.” This came about when Professor Bamberg of Clark University (USA), “the leading expert on a particular kind of narrative analysis,” made contact to offer Dr Gounder a book contract. Dr Paviour Smith explained that narrative “is important to understand who people are and how they present themselves and what they do with their stories” and Indentured Identities succeeds in this respect.

In her book, Dr Gounder explains the childhood memories that led her to study the life narratives of the Girmityas:

“My journey with these Girmityas’ life narratives began when I was seven years old. In my earliest memories of visiting dādī, I see us all sitting, and listening, the Girmityas’ voices entering the house through the large speakers on either side of a silver rectangular box as we drink hot milky tea. The radio had pride of place in my grandmother’s living room, where the television now sits. We listened to the Girmityas recollecting their experiences, which they did with sometimes laughter, sometimes tears, and at other times with anger, bitterness, or resignation.

It was a time when Fiji Indians were searching to define who they were, a hundred years after the first Girmityas arrived in Fiji. As our family’s history with Fiji began with Girmit, we would listen to the life narratives with great interest, after which came the adults’ critique. This was the only time that I heard the life narratives, until I began this study twenty-one years later. But although I did not hear them again, the Girmityas’ narratives whispered to me through my memories”.

Farzana commented to the audience, “The theme of migration probably resonates with us all because either we ourselves are migrants or we are children or great grandchildren or grandchildren of migrants.”

Indentured Identities: Resistance and accommodation in plantation-era Fiji, published by John Benjamins Publishing Company, USA, 2012.

Dr Gounder is a Lecturer in the Bachelor of International Studies degree programme at IPC.

 

From

http://ipc.ac.nz/news-and-events/a-new-book-by-dr-farzana-gounder/

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