Review Article
& Palliative Medicine®
Recruiting Participants
in End-of-Life Research
Karin T. Kirchhoff, PhD, RN, FAAN,
and Karen A. Kehl, MS, RN, ACHPN
A great deal of time, attention, and funding has been
dedicated to research concerned with improving care at
the end of life. However, sizes of samples for such
research are reduced by recruitment problems unique
to end-of-life studies, which limits their power and gen-
eralizability. In this article, experiences are shared and
suggestions are offered to increase recruitment using
4 recent studies on end-of-life topics as examples. The
issues in this article include those related to participants
A
great deal of time, attention, and funding has
been dedicated to research concerned with
improving care at the end of life. However, the
sizes of samples for such research are reduced by
recruitment problems unique to end-of-life studies,
which limits their power and generalizability. These
problems in recruitment have been well documented
in the literature, but few good solutions are offered.
In this article, experiences are shared and suggestions
are offered to increase recruitment using 4 recent
studies concerning end-of-life topics as examples.
Review of the Literature
Although a few studies in end of life have recruited
large samples,1-3 most researchers have reported dif-
ficulties in recruiting participants. Researchers have
been creative in changing recruitment strategies and
methods4 and redesigning their studies to maximize
the potential for recruitment.5,6 Ewing et al4 expressed
concern about not knowing the total number of poten-
tial participants (denominator) and then having limited
From the School of Nursing, University of Wisconsin–Madison,
Madison, Wisconsin.
Address correspondence to: Karin T. Kirchhoff, PhD, RN, FAAN,
UW–Madison, School of Nursing, 600 Highland Ave, CSC
K6/338, Madison, WI 53792-2455; e-mail: ktkirchhoff@wisc.edu.
Downloaded from ajh.sagepub.com at UNIV OF PITTSBURGH on June 20, 2015
American Journal of Hospice
Volume 24 Number 6
December/January 2008 515-521
© 2008 Sage Publications
10.1177/1049909107300551
http://ajhpm.sagepub.com
hosted at
http://online.sagepub.com
(patients or family members) and those related to the
health care providers or systems. A researcher who is
forewarned about higher-than-usual rates for lack of
contact, refusals, and no-shows in end-of-life research
can plan appropriately for the time and effort needed
during the recruitment phase of the study.
Keywords: end of life; patient recruitment; bereaved
family
access to those in the numerator because of gate-
keeping by caregivers.
Issues with recruitment can be divided into
those related to participants (patients or family
members) and those related to the health care
providers or systems, including privacy legislation.
Other issues are related to the research design. This
article will focus on those dealing with participants
and health care providers or systems.
Patients as Participants
One of the most obvious difficulties in recruitment
of research subjects at end of life is that patients are
frail and may be burdened by many symptoms.
When a study requires a lengthy interview, it is often
not possible to find patients in the target group who
are feeling well enough to participate or to complete
the study requirements. It is not unusual for a
patient to wish to participate, but the family mem-
ber who wishes to protect the patient may refuse.7 In
other cases, the family may wish for the patient to
participate, but the patient is too ill at that time.7
Issues regarding participants can be seen in a
study in which chronically ill patients are recruited
for advance care planning.8 In this study, there was
a facilitation of discussion with the patient and sur-
rogate designed to elicit patients’ preferences, values,
515
516 American Journal of Hospice & Palliative Medicine® / Vol. 24, No. 6, December/January 2008
and wishes concerning future medical care. The
study was designed to test the efficacy of the inter-
view on patient and surrogate outcomes immediately
after the intervention and at the time of surrogate
decision-making. Participants were adults with end-
stage renal or congestive heart failure and their
health care agents.
Because this research requires participation of
both the patient and the health care agent, it is dou-
bly hard to schedule the required interviews for the
intervention dyads. As others have found, sometimes
the patient wants to participate, but the family
member does not have time, wants to protect the
patient, or is uninterested.7,9,10 In other cases, the
family may be willing but the patient is too ill.
For patients and health care agents who do con-
sent to participate in this advance care planning
study, flexibility is required in location and, to a
lesser extent, in the timing of the data collection.
For 105 (70%) of the 150 participant pairs from 1
site, the location and time of the data collection
interview were recorded. Of these, 46 (43.8%) were
completed in the clinic, 49 (46.7%) were in the
home of the patient or health care agent, and 10
(9.52%) were in other settings such as the research
office. Ninety-seven (92.4%) interviews were com-
pleted between 7:00 AM and 5:00 PM, Monday
through Friday. However, 6 interviews (5.7%) were
completed on weekday evenings, and 2 (1.9%) were
completed on weekends or holidays. Although
patients might not be working, health care agents
frequently were employed and their schedules
needed to be accommodated.
One site for the advance care planning research
is a tertiary referral center, and consequently, patients
and families travel large distances to receive care.
These patients are often too fatigued after travel,
their diagnostic tests, and clinic visits to participate
in the interview and cannot return at another time
owing to the distance involved. Although this prob-
lem been documented elsewhere,4,11 the research
assistants in this site have been very creative and
have met with patients and families in hotels before
or after clinic visits and even in truck stops along
the way.
Families as Participants
Although patients are the best raters of their care
and their ratings are not well correlated with those
of the family,12 the patient is not a good source of
Downloaded from ajh.sagepub.com at UNIV OF PITTSBURGH on June 20, 2015
information when care at the last days of life is the
target of a study. These data are frequently collected
after the death, allowing enough time for the family
to make funeral arrangements and be involved in the
immediate postdeath activities. After the death, the
family who has been burdened with caregiving may
feel overwhelmed,7,10 may be in acute grief, or may
find the requirements of participation too much.4,11
Two studies13,14 recruited bereaved family mem-
bers to discuss their perceptions of the experience of
having a loved one die or their perceptions of the
quality of care at the end of life. The first study13
recruited family members of intensive care unit
(ICU) patients who had died in an ICU to partici-
pate in a focus group. The second study recruited14
family members of patients who died in either an
inpatient hospice or ICU to participate in inter-
views. In both of these studies, the primary prob-
lems were related to recruitment. The inability to
make the initial contact with potential participants
was the most significant reason for not enrolling eli-
gible family members.
Because the use of focus groups appeared to be
a less desirable method of collecting data from
recently bereaved family members, based on diffi-
culties in recruitment, an individual interview was
the method used in the second study. Both studies
had a similar number of eligible participants. The
focus group study had 78 eligible family members.
In the interview study, 73 family members met the
eligibility criteria.
Using lists of recently deceased and their next of
kin, researchers were unable to contact 47.4% of
these family members in study 1 and 38.4% in study
2. Of those that could not be contacted, a small
number had died after the death of the original
patient (5.4% in study 1 and 3.6% in study 2). Most
of the loss to follow-up was due to a disconnected
telephone or an incorrect number.
In study 1, 52.6% (41) of the family members
were contacted, and 61.6% (45) in study 2. Of the
family members that were contacted, 73.2% in study
1 refused to participate, 7.3% agreed but did not
participate, and 19.5% participated in the study. In
study 2, 68.9% refused to participate, 8.9% agreed
but did not participate, and 22.2% participated
(Figure 1). Most individuals did not give a reason for
not wishing to participate (Table 1). The difficulty
then was not thought to be with the method of data
collection but with attempting to recruit recently
bereaved family members.
 Recruiting Research Participants / Kirchhoff, Kehl 517

Eligible participants
Study 1 n = 78 Study 2 n = 73

Number contacted Unable to contact

Study 1 n = 41 (52.6%) Study 2 n = 45 (61.6%) Study 1 n = 37 (47.4%) Study 2 n = 28 (38.4%)

Agreed to participation Refused

Study 1 n = 11 Study 2 n = 14 Study 1 n = 30 Study 2 n = 31
(26.8% of contacted) (31.1% of contacted) (73.2% of contacted) (68.9% of contacted)

Participated Did not participate

Study 1 n = 8 Study 2 n = 10 Study 1 n = 3 Study 2 n = 4
(10.3% of eligible) (13.7% of eligible) (27.3% of agreed) (28.6% of agreed)

Figure 1. Recruitment of bereaved family members into focus group (study 1) and interview (study 2) research.

Table 1. Recently Bereaved Participants’ Reasons an interview was called in advance to see if he or she
for Refusing to Participate wanted to reschedule. The interviewer was told to
Percentage of keep the scheduled appointment, but the participant
Total Refusals did not show for the appointment, which was at
home, and did not return calls. Seven other individ-
Focus Group Interview
uals contacted asked for a second consent, which
Reason (n = 78) (n = 73)
was not returned. Four individuals agreed to partic-
No explanation 26.9 17.8 ipate and then did not show for interviews. Attempts
Prefer individual interview 31.8 NA to reschedule were not successful. One participant
Requested second consent for NA 15.6
agreed to reschedule and then missed the second
telephone interview, did
not return appointment, which was scheduled at home.
Too ill 7.3 6.7 One issue that was of concern to the investiga-
Could not talk about 4.9 6.7 tors was the type of one-to-one interview. In the
experience yet interest of having participants as comfortable as pos-
Too busy 0 4.4 sible and maximizing recruitment, participants were
Too forgetful 0 4.4
Requested family not be 0 4.4
allowed to choose a face-to-face or telephone inter-
contacted view. Face-to-face interviews were scheduled at the
They will call when ready 0 4.4 participants’ convenience, and they could choose to
Sent consent, then refused 0 4.4 be interviewed at their home, at the facility, or at the
Prefer to write letter 2.4 0 research office. Because of the recruitment difficul-
ties in the first study, it was thought that allowing
participants to choose the type of interview and the
The group that consented and then refused or setting might increase participation and increase the
did not participate is interesting. In study 2, the richness of the results obtained.
recruitment of participants spanned a time period Another similar decision to increase recruitment
including September 11, 2001. In the month fol- was to allow participants to decide if they wanted to be
lowing that day, a participant who was scheduled for interviewed alone or with other family members. In

Downloaded from ajh.sagepub.com at UNIV OF PITTSBURGH on June 20, 2015

518 American Journal of Hospice & Palliative Medicine® / Vol. 24, No. 6, December/January 2008
the first interview, one participant’s son arrived
about halfway through the interview and wanted to
join in. In all cases where multiple participants were
interviewed together, each participant was informed
about the study and signed an informed consent
document. Participants chose individual, pair, and
group interviews, at times admitting that they would
only come “if my daughter can be with me.”
For the hospice setting, there were 11 partici-
pants. Eight interviews with a total of 10 partici-
pants were face-to-face, and 1 interview with 1
participant was done by telephone. For the ICU set-
ting, there were 12 participants. Three interviews
with a total of 7 participants were face-to-face, and
4 interviews with a total of 5 participants were by
telephone. Face-to-face interviews were either in the
participant’s home or the hospice inpatient center
for hospice participants, and in the participant’s
home or the researcher’s office for ICU participants.
The responses of all family members interviewed
were analyzed in the qualitative portion. Those par-
ticipants interviewed with other family members
often had remembrances that were rich and filled
with details. Often a family member would start to
respond and the other family member would fill in
details or correct the memory of the first participant.
On the quantitative instrument, multiple partic-
ipants in an interview created a dilemma when the
participants had different answers. The original
analysis plan was to consider the patient the unit of
measure. But for patients with multiple family mem-
bers with differing answers, this was not possible. In
contrast, by considering the participant as the unit
of measure, some deaths had multiple participants
represented and could slant the results of the whole.
The final analysis was done with the patient as the
unit of measure, and the responses of the primary
caregiver or next of kin listed by the agency were
used when multiple participants were present.
It is important to remember that the participants
recruited for these studies had all experienced the
loss of someone close to them in the previous 4 to 18
months. Research suggests that one of the best times
to interview family members is 2 to 4 months after
the death. This timing reduces the numbers of lost
participants due to changes in residence, allows for
maximal recall of events and feelings, has the most
therapeutic effect for the participant, and minimizes
burden by not occurring while the participant is busy
attending to the immediate practical and legal details
associated with the death of the loved one.15,16
Downloaded from ajh.sagepub.com at UNIV OF PITTSBURGH on June 20, 2015
A number of solutions have been found to be
helpful. Any action that increases the participant’s
sense of control has increased the participation. As
described, allowing participants to choose the time,
method, and venue has been helpful. Other solu-
tions that might be helpful include providing toll-
free numbers or phone cards to individuals who
want to participate in a phone interview.
Organizational Barriers
Some organizational barriers were also experienced
in the study with interviews. Some of the agencies
were hesitant to send out letters or to provide infor-
mation about family members.
One agency chose the opt-out card option in
which potential participants are sent a letter about
the study and a postcard, which they are instructed
to return if they do not want to participate. This
gives the researcher permission to contact them if
they did not return the card. This agency actually
chose to send introductory letters itself, and when
family members did not return the opt-out cards, it
chose to make follow-up calls to each potential par-
ticipant. The agency obtained verbal permission to
give the researchers the family member’s phone
number at that time.
Another agency insisted that a staff member be
included on the research team. That staff member
prepared the letters for the agency and called the
family members who did not return the opt-out card
to schedule their interviews.
Systems Issues
One system-related barrier is that care providers are
too busy to allow themselves the time to give
patients information about research.4,9 Enactment
of patient privacy laws has prevented researchers
from directly approaching patients in clinical settings.
Staff members employed in these settings are then
requested to approach and at times, even screen for
eligibility before approaching a potential subject.
Another common barrier in recruiting participants
for end-of-life research is gatekeeping by organiza-
tions or care providers. Gatekeeping refers to actions
of individuals that provide or deny researchers access
to potential, eligible participants. The tendency toward
gatekeeping in end-of-life care may be increased
because of a desire to protect dying persons and a

reluctance to ask them to spend any of their limited
time on research.17 In addition to creating bias, it
raises issues of paternalism and loss of patient
autonomy.4,9 Generalizability is compromised, and
reports of accrual and assignment required by edi-
tors will be inaccurate. Rose18 has noted that good
health care providers are more likely to be support-
ive of research efforts and asks if that is because
they are not afraid of what researchers may find.
In a pilot study that tested a tailored informa-
tional intervention to prepare ICU family members
for withdrawal of ventilatory support, families in the
control group received usual care. Families in the
intervention group received a message based on
Johnson’s Self Regulation Theory and tailored to
whether or not the patient would be extubated and
whether the anticipated time from withdrawal to
death was 1 hour or less or more than 1 hour. After
the death, the next of kin received a mailing with the
instruments 2 to 4 weeks later and was contacted for
a telephone interview 1 to 2 weeks after the mailing.
The issues encountered in preparing families for
withdrawal have echoed and expanded those previ-
ously documented in the literature. Gatekeeping
issues have been noted from investigational review
boards (IRBs), organizations, physicians, nurses, and
other health care providers. In the study concerning
preparing family members for withdrawal in the ICU,
the IRB initially questioned the necessity of the
research because this type of intervention should
already be occurring. This thinking is similar to
Westcombe’s11 observation that some providers
thought the value of the intervention was self-evi-
dent, and research to confirm the value was not nec-
essary.
Another issue that affected recruitment in this
ICU study had to do with the nature of the research
team. The pilot study was enacted by graduate nurs-
ing students who changed every semester and were
usually only available from 9:00 AM to 5:00 PM,
Monday through Friday. The ICU staff became frus-
trated when they called in the evening, on week-
ends, or on holidays, and no one was available even
though unit posters with the pager number gave
information on when research staff was available.
The ICU staff also became frustrated at interacting
with different research staff members each day and
each semester.
A breakthrough in recruiting occurred when 1
student asked to take primary responsibility for
recruiting by carrying the pager and answering every
Downloaded from ajh.sagepub.com at UNIV OF PITTSBURGH on June 20, 2015
Recruiting Research Participants / Kirchhoff, Kehl 519
call from the ICU. She made daily rounds to find
patients who might be withdrawn from life support.
Other students still performed the intervention, but
the ICU had a single individual to contact, and she
became the face of the study. She was invited to staff
meetings and was well accepted by the staff.
Other gatekeeping by physicians, nurses, and
other health care professionals has been common
and sometimes hard to detect. In the family prepa-
ration study, there were barriers from physicians
who thought that care was “good enough” and that
a trial of an intervention would not add to their
preparation of the family. Nursing staff was con-
cerned about whether their “usual care” was
thought to be inadequate.
The issue of burdening families requesting par-
ticipation in research at a sensitive time has been
raised in these studies. Williams17 reported that staff
reluctance to encourage patient and family partici-
pation in research often centers on the perception
that patients and families would be unwilling and
that there was inadequate staffing, resources, or time,
and staff concerns about confidentiality and the bur-
den that research participation might place on
patients and families. We discovered in the ICU that
staff nurses would fail to approach eligible families
because they were concerned about burdening them
with participation in a research study before an
impending death. The staff nurses would also fail to
approach families that they thought were “having a
hard time,” creating a bias in those who were even-
tually included. On the other hand, overly distraught
families who might not be able to attend to a mes-
sage were listed as excluded, making such distinc-
tions even more difficult.
In the advance care planning study where end-
stage renal or congestive heart failure patients and
their surrogates were recruited, barriers from health
care providers have sometimes been very blatant. In
1 setting, the team, including physicians, nurses,
social workers, and administrators, requested that
before having the researchers review charts to deter-
mine eligibility, they wanted to send letters to all
patients affiliated with the clinic to inform them of
the study and ask the patients’ permission for the
researchers to review the charts for eligibility.
Despite numerous reassurances that this was not
required under the Health Insurance Portability and
Accountability Act (HIPAA), the staff insisted that
patients would be outraged to find out that
researchers had reviewed the charts for eligibility
520 American Journal of Hospice & Palliative Medicine® / Vol. 24, No. 6, December/January 2008
without explicit permission. It was only when the
IRB and the HIPAA compliance officer for the umbrella
organization explained in writing that such permis-
sion was not necessary and was indeed an additional
burden to patients who might be initially contacted
but later found to be ineligible, that researchers
were allowed to review charts for eligibility.
The research staff in 1 setting was initially asked
to page patients’ physicians before approaching
patients to inform them of the research study and to
ask if a researcher could speak to them. After consid-
erable negotiation, it was agreed that the researchers
could send letters to attending physicians informing
them of which patients were currently eligible for the
study and requesting permission to contact those
patients. Only 1 of 5 physicians objected to any
patient being contacted. This additional work and
delay frustrated research assistants considerably. This
paternalism limited the patient and health care
agent’s access to a study that might have had benefit
for them. In fact, there is evidence that many patients
will choose to participate in research if they are
asked19 and that most family members of patients
near the end of their lives benefit from participation
in research.20
Because the advance care planning study is
multisite, discrepancies in recruiting in different
clinical environments have been observed. Two sites
have been recruiting participants for more than 18
months, with very different results. In 1 site, issues
of gatekeeping started at the institutional level. One
tertiary hospital and clinic has not allowed the
researchers to screen charts for eligibility, so
researchers must depend on primary care providers
to approach patients about the study and relay names
of interested participants to the research team. This
approach has many difficulties, as have been previ-
ously highlighted in the literature.4,21 With this
approach, only 1 participant pair has been recruited
in 18 months.
Opt-out letters were used in other sites, which
gave the research team a list of eligible, potential par-
ticipants to contact. This method has worked well in
sites with electronic databases that allow a primary
care provider to screen for eligibility electronically.
Some additional gatekeeping occurred when the staff
member who mailed the recruitment letters explained
that she sometimes did not send letters to patients
whom she felt “would not be good research candi-
dates.” Despite this gatekeeping, 14 participant pairs
were recruited during 12 months with this method.
Downloaded from ajh.sagepub.com at UNIV OF PITTSBURGH on June 20, 2015
The most successful recruiting has taken place
when the researchers can screen charts to deter-
mine eligibility and a staff member asks eligible
patients if a researcher can speak with them about a
study. This is the exclusive means of recruitment at
1 site, and 150 participant pairs have been recruited
in 18 months.
Recommendations for Future Research
Previous authors have emphasized the need for
involvement of the clinical staff throughout the
research process,22 including finding clinical champi-
ons and keeping clinicians informed throughout the
research process. Because of the clinicians’ heavy
workloads, other recommendations have been to avoid
clinician recruitment whenever possible. One
approach that has been suggested is to screen patients
for potential participation in research on admission to
a hospice or palliative care program.23 Developing
studies that are short in duration and have easy-to-use
instruments are also strategies to assist in recruiting
fragile patients and their stressed family members.
The key to successful recruiting is flexibility.
Different studies, and different sites within the same
study, may call for vastly different recruitment
strategies. Having a number of recruitment strate-
gies, including recruitment through clinician refer-
ral, clinicians sending opt-out (preferable) or opt-in
letters to eligible participants, and use of brochures
will allow researchers to reach potential participants
in numerous ways. The flexibility of research assis-
tants in the time, location, and methods of data col-
lection to allow patients and families to respond in
ways that are most comfortable to them also
enhances recruitment. In addition to face-to-face
and telephone interviews, e-mail interviews have
been used successfully by some researchers and are
worth exploration for end-of-life research when
patients and families may find it difficult to travel or
to speak on the telephone for long periods.
There is concern about the generalizability of
the findings of research such as this, with a low per-
centage of the population being successfully
recruited to participate in the research. The recruit-
ment issues and barriers favor participants who are
articulate, have not moved after a death, and have
free time to respond to the request for participation
and to participate in the research. The responses of
the research participants may not accurately capture

the experience of others who are not able or choose
not to participate in the research.
Although it is often difficult to get past the organi-
zational, provider, and participant barriers, further
research to improve care at the end of life is critical to
health through the life span. Researchers should
expect high refusal and dropout rates.24 Researchers
who are forewarned about these higher than usual
rates for lack of contact, refusals, and no-shows in end-
of-life research can plan for more time and effort dur-
ing the recruitment phase of the study. With creativity
and persistence, and more partnering with clinicians,
researchers will learn more to improve the experience
of patients and families at this vulnerable time.
References
1. SUPPORT Investigators. A controlled trial to improve
care for seriously ill hospitalized patients: The Study to
Understand Prognoses and Preferences for Outcomes
and Risks of Treatments (SUPPORT). JAMA. 1995;274:
1591-1598.
2. Tilden VP, Drach LL, Tolle SW, Rosenfeld AG, Hickman
SE. Sampling challenges in end-of-life research: case-
finding for family informants. Nurs Res. 2002;51:66-69.
3. Tolle SW, Tilden VP, Rosenfeld AG, Hickman SE.
Family reports of barriers to optimal care of the dying.
Nurs Res. 2000;49:310-317.
4. Ewing G, Rogers M, Barclay S, McCabe J, Martin A,
Todd C. Recruiting patients into a primary care based
study of palliative care: why is it so difficult? Palliat
Med. 2004;18:452-459.
5. McWhinney IR, Bass MJ, Donner A. Evaluation of a
palliative care service: problems and pitfalls. BMJ. 1994;
309:1340-1342.
6. Rinck GC, van den Bos GA, Kleijnen J, de Haes HJ,
Schade E, Veenhof CH. Methodologic issues in effec-
tiveness research on palliative cancer care: a systematic
review. J Clin Oncol. 1997;15:1697-1707.
7. Davies B, Reimer JC, Brown P, Martens N. Challenges
of conducting research in palliative care. Omega
(Westport). 1995;31:263-273.
8. Kirchhoff KT, Hammes B, Briggs LA, Kehl KA. A
patient-centered approach to advance care planning
(PC-ACP): interim data. Paper presented at: State of the
Science; October 13, 2006; Washington, DC.
9. Hudson P, Aranda S, McMurray N. Randomized con-
trolled trials in palliative care: overcoming the obstacles.
Int J Palliat Nurs. 2001;7:427-434.
Downloaded from ajh.sagepub.com at UNIV OF PITTSBURGH on June 20, 2015
Recruiting Research Participants / Kirchhoff, Kehl 521
10. McMillan SC, Weitzner MA. Methodologic issues in
collecting data from debilitated patients with cancer
near the end of life. Oncol Nurs Forum. 2003;30:123-
126.
11. Westcombe AM, Gambles MA, Wilkinson SM, et al.
Learning the hard way! Setting up an RCT of aro-
matherapy massage for patients with advanced cancer.
Palliat Med. 2003;17:300-307.
12. Sulmasy DP, McIlvane JM, Pasley PM, Rahn M. A scale
for measuring patient perceptions of the quality of end-of-
life care and satisfaction with treatment: the reliability
and validity of QUEST. J Pain Symptom Manage. 2002;
23:458-470.
13. Kirchhoff KT, Walker L, Hutton A, Spuhler V, Vaughan-
Cole B, Clemmer T. The vortex: families’ experiences
with death in the intensive care unit. Am J Crit Care.
2002;11:200-209.
14. Kirchhoff KT, Kehl KA. Family perceptions of quality of
care for dying patients in ICU and in-patient hospice.
Paper presented at: State of the Science; October 8,
2004; Washington, DC.
15. Foley DJ, Brock, DB. Comparison of an In-person and
Telephone Responses in a Survey of the Last Days of Life.
Anaheim, Calif: American Statistical Association,
Section on Survey Research Methods; 1990.
16. Addington-Hall J, McPherson C. After-death interviews
with surrogates/bereaved family members: some issues of
validity. J Pain Symptom Manage. 2001;22:784-790.
17. Williams CJ, Shuster JL, Clay OJ, Burgio K, L. Interest
in research participation among hospice patients, care-
givers, and ambulatory senior citizens: practical barriers
or ethical constraints? J Palliat Med. 2006;9:968-974.
18. Rose KE. Gaining access to potential research partici-
pants. Prof Nurse. 2000;15:465-467.
19. Ling J, Rees E, Hardy J. What influences participation
in clinical trials in palliative care in a cancer centre? Eur
J Cancer. 2000;36:621-626.
20. Hudson P. The experience of research participation for
family caregivers of palliative care cancer patients. Int
J Palliat Nurs. 2003;9:120-123.
21. Grande GE, Todd CJ. Why are trials in palliative care so
difficult? Palliat Med. 2000;14:69-74.
22. Cook AM, Finlay IG, Butler-Keating RJ. Recruiting into
palliative care trials: lessons learnt from a feasibility
study. Palliat Med. 2002;16:163-165.
23. Casarett D, Kassner CT, Kutner JS. Recruiting for
research in hospice: feasibility of a research screening
protocol. J Palliat Med. 2004;7:854-860.
24. Buss MK, Arnold RM. Challenges in palliative care
research: one experience. J Palliat Med. 2004;7:405-407.