Clinical Trial Details
— Status: Completed
Administrative data
| NCT number |
NCT01008241 |
| Other study ID # |
Project Hope |
| Secondary ID |
|
| Status |
Completed |
| Phase |
|
| First received |
|
| Last updated |
|
| Start date |
October 2009 |
| Est. completion date |
March 2010 |
Study information
| Verified date |
April 2023 |
| Source |
Nova Southeastern University |
| Contact |
n/a |
| Is FDA regulated |
No |
| Health authority |
|
| Study type |
Observational
|
Clinical Trial Summary
The goal of this cross-sectional study is to gain an understanding of the knowledge and
attitudes regarding end of life issues and hospice care among a sample of residents of South
Florida. This study is being conducted by 3rd year Osteopathic Medical Student (OMS-III)Nova
Southeastern University College of Osteopathic Medicine (NSU COM) research fellow Heather
Ruff as part of the research fellowship requirements.
Participants will complete a paper and pencil questionnaire that measures 4 domains of
interest (advanced care planning; end of life care; hospice care and death and dying) as well
as demographic factors (age, marital status, education etc.). It is estimated that the survey
will take 15 minutes to complete. Data will be collected anonymously, with no personal
identifying information. The instructions on the questionnaire state that by completing the
questionnaire, the participant is providing consent to participate in the study. We will use
time and space sampling methods to recruit up to 250 participants at community venues (i.e.,
beaches, street corners, parks, pedestrian malls, and other public venues were people
congregate) in South Florida. At each venue, we will define a specific area; persons who
enter the defined area will be approached, screened for eligibility (18 years of age or older
and a resident of South Florida), and if eligible, invited to participate by trained research
staff. Sampling intervals will be determined by traffic flow at each venue. If a person
agrees to participate they will be given a paper and pencil copy of the survey to complete on
the spot. Participants will be given a token of appreciation. Data entry and data analyses
will be done using Statistical Package for the Social Sciences (SPSS).
Description:
The survey instrument included questions about demographics (constructed by the researchers),
including the participants' age, gender, ethnicity, relationship status, education level,
income, and whether they had a religious affiliation. Also included were items about steps
participants may have taken to plan for their health care in the event they were unable to
make personal health care decisions, such as whether they had a living well or durable power
of attorney for health care, and whether they had knowledge of the existence of these
documents prior to taking the survey. Participants were also asked where/from whom they first
learned about hospice and where they got most of their knowledge about hospice. Hospice. This
scale contained 24 statements about knowledge and opinions on hospice care. Hospice was
defined as a program that provides care to people with illnesses that cannot be cured when
they are at the end of their lives. Participants were asked to report their feelings from 1
(strongly disagree) to 5 (strongly agree) about each statement. Items included (a) ''Hospice
care means giving up,'' (b) ''Hospice care means you get no treatment,'' (c) ''Hospice care
can be provided in a patient's home if the patient or family wishes it,'' and (d) ''Those who
believe in God do not need hospice.'' More favorable attitudes toward hospice are evidenced
in higher scores. End of life care. Seven Likert-type items were used to ask participants
about their thoughts and feelings related to the kind of medical care they would want if they
had a disease, like cancer, that could not be cured. When answering these questions,
participants were asked to consider a hypothetical situation in which they had a terminal
disease and not consider their current state of health. This scale is composed of 7 items and
uses a 5-point Likert-type response ranging from 1 (strongly disagree) to 5 (strongly agree).
Participants were asked items such as
(a) ''If I had a disease (like cancer) that the doctors could not cure, I would want to live
as long as possible even if I had to be on life support or a breathingmachine,'' and (b) ''If
I had a disease (like cancer) that could not be cured, decreasing pain would be more
important to me than living as long as possible.'' Higher scores indicate higher levels of
advanced planning for EOL care. Communication about death and dying. Death and dying
communication was measured using 9 items rated on a 5-point Likert format, with responses
ranging from 1 (strongly disagree) to 5 (strongly agree). Examples of items include
1. ''I feel comfortable talking about death in general,''
2. ''Dying is a normal part of life,'' and (c) ''Death should be avoided at all costs.''
Higher scores indicate greater comfort with communicating about death and dying. Through
convenience sampling strategies, a total of 625 individuals were approached; 610 were
eligible, and 361 participants returned the survey. Thirty questionnaires were dropped
because less than two thirds of the scale items were completed), resulting in a sample
size of 331. Due to low numbers in some demographic categories, educational level was
collapsed into 3 categories (ie, high school/some college, associate/ bachelors degree,
and graduate degree) and annual income was collapsed into ''less than US$25 000, $25 000
to US$49 999, and US$50 000 or more. Ethnicity was categorized as non-Hispanic white,
black, Hispanic, and other/mixed race. Relationship status was dichotomized into ''have
a partner'' and ''do not have a partner.''
