e4 Abstracts / Disability and Health Journal 2 (2009) e1ee15

William Kennedy, Center for Independent Living of North Central Florida,

Gainesville, FL

Background/Significance: Women with significant physical disabilities

have numerous medical encounters. Still, many do not receive breast

health screenings as recommended. Elucidating the influence of disability

on preventive health care is imperative to addressing this public health

issue. By placing cameras in the hands of women with disabilities,

photography becomes a valuable tool for enhancing understanding of

screening behavior as relayed through their own eyes and experiences.

Objective/Purpose: The purpose of this study was to assess the feasibility

and benefits of providing digital cameras to women with physical

disabilities so they could ‘‘Photo-map’’ the factors that made breast health

screening easy or difficult during an actual medical visit.

Methods: Women were trained in the Photo-mapping method and provided

digital cameras. With consent from their health care provider and the facility

manager, women took pictures that represented the facilitators and barriers

they experienced. They also developed audio-recorded descriptions for their

photographs; highlighting their meaning and significance. The photos and

audio-recordings were developed into narrated slideshows (Photo-maps)

that were delivered over a secure website for viewing and evaluation.

Results and Discussion: Several women were interested in completing

Photo-maps, yet gaining consent from the medical providers and facilities

was a challenge. Each completed Photo-map revealed the woman’s

personal story and the visit aspects she felt were important to document

and relay to others. We will present several Photo-maps and discuss their

feasibility vis-a-vis the authorization and technical processes required,

and how they were evaluated for their potential as tools for research,

education, and empowerment.

What makes it easy or hard to receive, recommend and/or provide

breast health screening to women with physical disabilities? Insights

from women and health care providers

Ellen Lopez, PhD, MPH, University of Florida, Gainesville, FL

Eva Egensteiner, University of Florida, Gainesville, FL

Elena Andresen, PhD, Department of Health Services Research,

Management, and Policy, University of Florida, Gainesville, FL

Melissa Lanzone, University of Florida, Gainesville, FL

Vijay Vasudevan, University of Florida, Gainesville, FL

William Kennedy, Center for Independent Living of North Central Florida,

Gainesville, FL

Staci Graff, MPA, Center for Independent Living of North Central Florida,

Gainesville, FL

Background/Significance: US women who are living with physical

disabilities have an equal or greater chance as other women of developing

breast cancer. For these women and their health care providers, the ability to

receive, recommend and/or provide breast health screenings (clinical breast

exams, mammograms, self breast exams) as nationally recommended can be

challenging.

Objective/Purpose: The purpose of this study was to better understand the

factors that impact preventive breast health screening from the perspectives

of women with physical disabilities and health care providers in North

Central Florida.

Methods: In partnership with the Center for Independent Living of North

Central Florida and under the guidance of a Steering Committee

(comprising individuals from the disability community, and representatives

from local-, state-, and federal-level organizations), in-depth telephone

interviews were conducted with 30 women with physical disabilities and 29

health care providers. Analysis involved both quantitative and qualitative

techniques.

Results and Discussion: Among women respondents, nearly all had ‘‘ever’’

received the three breast health screenings, yet most were currently off-

schedule with recommended guidelines. In elucidating the issues

surrounding screening, we will report key factors and themes that

emerged from the interviews e focusing on those found to be similar and

unique among providers and women. These include: knowledge and

attitudes about cancer and screening, opinions and experiences related to

health care accessibility, and perceptions related to the role disability

plays in health care behavior and practice. Finally, we will discuss

implications of these findings for future inquiry and intervention.

Challenges for participatory research strategies and approaches in

Alzheimer’s disease

Ursula Naue, PhD, Department of Political Science, University of Vienna,

Vienna, Austria

Thilo Kroll, PhD, School of Nursing & Midwifery, University of Dundee,

Dundee, United Kingdom

Objective: Alzheimer’s Disease (AD) as a disabling condition and public

health concern has been received increasing attention from policymakers

and researchers. The study aims at determining the role of participatory

research methods in AD. Usually, participatory research approaches are

understood as an empowerment process, involving persons or groups who

are the ‘target groups’ in specific research fields. However, also basic

objections are raised against this equation.

Method: The study used three principal methods, (a) semi-structured in-

depth interviews with 24 representatives of patient organisations and

researchers in the US and Europe; (b) a rapid review of the scientific

literature on participatory research and AD using MEDLINE, PUBMED,

CINAHL, PSYCINFO, SOCIOFILE and AGELINE., limited to the past

10 years; (c) an examination of the grey literature on participatory

research approaches in Alzheimer’s disease research.

Results: The question what participation is and how it can be achieved, was

perceived as being critically linked to the ability to make reasonable

decisions. Interview participants raised doubts whether mere involvement

entails ‘real’ and ‘meaningful’ participation of individuals with AD, and

observed that participation is primarily focused on carers. The literature

review (63 publications) revealed that few participatory research

strategies have been tested.

Conclusions: The presuppositions for participatory research designs have

to be reconsidered. Questions of power relations, the value of lived

experience and the necessity of using other modes of communication

shape the agenda for rethinking participation of Alzheimer’s patients in

research settings.

Homelessness, immigrant status, poverty and dementia: Identifying

rehabilitative and care needs at the margins of society

Thilo Kroll, PhD, School of Nursing & Midwifery, University of Dundee,

Dundee, United Kingdom

Ursula Naue, PhD, Department of Political Science, University of Vienna,

Vienna, Austria

Objective: In most Western societies dementia is increasingly viewed as

a costly public health issue that requires concerted responses from

policymakers, researchers, clinicians, and advocates. Currently, most

investments are made into genetic research in the hope to identify the

biological root causes of dementia. So far little attention has been

directed towards individuals living with dementia who experience social

marginalisation. The aim of this study was to review the current evidence

base for addressing the rehabilitative and care needs of three dementia

population subgroups: impoverished adults, homeless adults, and first

generation immigrants.

Methods: (a) Secondary data analyses of the National Health Interview

Survey 2005/2006 (NHIS), (b) rapid evidence review of the literature,

involving MEDLINE, CINAHL, PUBMED, PSYCINFO (1996-2007), (c)

Nexis UK media search for stories at the intersection of dementia and