Summary of Evidence: Qualitative and Descriptive Methodology (No Treatment Interventions)
Reference Source
Number
68
Bernstein
1990
Study Design
Descriptive
Used CCFNI
plus interview
and
demographic
sheet 72 hours
postadmission
Study
Participants
n = 53,
convenience
sample of
adult family
members of
neurological/
neurosurgical
patients in one
ICU
Compared
results to a
study of family
members of
ICU cardiac/MI
patients
46
Bond et al
2003
Exploratory
qualitative
descriptive
Used content
analysis,
n = 7 family
members of
pts with
severe TBI
(GCS < 8)
Relevant Findings
Top 15 needs:
1. To be encouraged that the patient is being given
the best care possible
2. To have questions answered honestly
3. To know the prognosis
4. To be called at home about changes in the
patient’s condition
5. To feel there is hope
6. To have explanations given that are
understandable
7. To know specific facts concerning the patient’s
progress
8. To feel that the hospital personnel care about the
patient
9. To know exactly what is being done for the patient
10. To know how the patient is being treated
medically
11. To see the patient frequently
12. To know why things were being done for the
patient
13. To receive information about the patient once a
day
14. To be told about transfer plans while they are
being made
15. To talk about the possibility of the patient’s death
Participants ranked physicians as the most likely person to
meet needs for accurate information. Nurses perceived as
source of information regarding transfer and day to day
patient care.
Common themes identified:
1. Need to know: identified Day 1, continued
throughout ICU stay
2. Need for consistent information: desire for
uniform, condensed information provided by a
single doctor to all family members. Continued
Limitations/Assessment of Study
Quality
Lack of information provided re:
ranking of other items
Single center
Cardiac/MI comparison group was
from a previously completed
unpublished study
Did not evaluate impact of other
stressors (financial or lifestyle changes,
disruption of routine).
57
56
Duff 2002
Engli
&KirsivaliFarmer
1993
continued to
recruit
participants
until
saturation
occurred
Qualitative,
n = 36 (11
grounded
individuals
theory method with TBI, 25
close family
Data collection members)
continued
until
saturation
achieved
Comparative
descriptive
Descriptive
analysis of
needs
identified by
families on the
CCFNI,
Also asked if
needs were
met and by
whom
n = 14 (6
questionnaires
from families
of patients
without brain
injury; 8 from
families of
patients with
brain injury –
brain injury
was SAH, CVA,
head trauma
without other
system injury)
throughout stay.
3. Need for involvement in care: Identified
frustration with being restricted from patient, and
expressed need to know what they could do for
the patient
Basic social process identified: Negotiating Uncertainty
 Uncertainty due to illness trajectory and eventual
outcome
Four phases identified, the first of which was willing
survival. Characterized by:
 Presence at bedside
 Importance of spiritual/religious beliefs and rituals
 Perception that doctors were pessimistic about
survival and ultimate outcome
 Need to remain close by for presence and to
advocate for care
 Family/community support (all but one family had
additional family and community support; the
family that did not demonstrated greater stress)
Top ten needs identified by family members of patients
with brain injury:
1. To know the prognosis
2. To have questions answered honestly
3. To be assured that the best possible care is being
given to the patient.
4. To be called at home about changes in the
patient’s condition.
5. To feel that the hospital personnel care about the
patient.
6. To have a specific person to call at the hospital if
unable to visit.
7. To know how the patient is being treated
medically.
8. To have explanations that are understandable
9. To have specific facts about the patient’s progress
10. To see the patient frequently
Sample taken from 2 sites in one city
Although not specifically excluded, the
sample did not include:
 Some types of families
(blended, same-sex heads of
household, spouse as primary
caregiver)
 Families in which more than
one family member was
injured, or in which the family
already included a dependent
family member other than
children.
Small sample size
Return rate for questionnaire was
~30% so may not be representative
sample
Approached to participate by
volunteers so may have introduced
selection bias
Not all needs were ranked by all
participants
Similarities in needs statements may
have resulted in consistency response
status
54
Forrester
et al 1990
Exploratory
n = 92 family
member-nurse
Descriptive
pairs,
analysis of 30- consisting of
item version of 92 family
CCFNI,
members and
comparing
the nurses
family
(n=49)
member needs providing
with needs
direct care for
identified by
their relative
nurses
(nurse
providing care assessed
for their
needs for the
relative
specific family
member who
Interviews
completed
completed
CCFNI)
between 24
and 72 hours
after patient
was admitted
to ICU
Additional findings
 Most needs met by physicians (53% for group with
BI)
 33% of needs met by nurses for both groups
 Remaining needs (20%) met by chaplains, other
relatives, friends, other
Six most important needs identified by family members:
1. To be assured that the best possible care was
being given to the patient
2. To have questions answered honestly
3. To know specific facts about the patient’s
condition
4. To know how the patient was being treated
5. To be called at home about changes in the
patient’s condition
6. To know the prognosis
Five most important needs identified by ICU nurses:
1. To have questions answered honestly
2. To be assured that the best possible care was
being given to the patient
3. To feel that hospital personnel cared about the
patient
4. To have explanations given in terms that are
understandable
5. To know why things were being done for the
patient
Statistically significant difference in importance assigned
by family members and nurses in 15 of 30 needs. Family
members’ mean ratings were higher than nurses’ mean
ratings for 28 of 30 items.
Most highly significant differences (p<0.001) for these five
needs statements:
1. To feel accepted by hospital staff
2. To know about the types of staff taking care of the
patient
Consistency of how the questionnaire
was completed is unknown (given to
families, who returned it when done)
Compared patient groups from 2
different ICUs
Included families/nurses from surgicaltrauma ICU and neurologic ICU, but
unclear how many of the patients had
neurological illness or injury
No specific information about severity
Single center
Family members’ mean ratings for all
needs statements were > 3 on 4 point
Likert scale (lowest 3.11).
Nurses’ mean ratings for 26/30 needs
statements were > 3 on 4 point Likert
scale.
65
Fox &
Jeffrey
1997
Descriptive,
correlational
Used an
adapted
version of a
previous
questionnaire
47 nurses in
an ICU in
Canada
3. To help with the patient’s care
4. To talk about the possibility of the patient’s death
5. To know specific facts about the patient’s
condition
Correlation between role expectations and role
performance: r = 0.60, p < 0.0001
Most common role expectations (rated as expected most
times or always by at least 90% of nurses):
1. Make family feel free to ask questions whenever
they want
2. Facilitate interaction between family and patient
3. Explain equipment, patients appearance, etc to
family
4. Make sure family knows nurse’s name
5. Encourage family to call any time to talk with
nurse
6. Prepare family for what they will see during their
first visit
Least common role expectations (rated as expected most
times or always by less than 20% of nurses):
1. Allow family members to stay in patient’s rooms
during treatments or procedures
2. Allow family to visit as long as they wish
3. Involve family members in patient care
Most often performed (rated as performed most times or
always by at least 90% of nurses):
1. Make family feel free to ask questions whenever
they want
2. Facilitate interaction between family and patient
3. Encourage family to call any time to talk with
nurse
4. Make sure family knows nurse’s name
5. Explain equipment, patients appearance, etc to
family
Least commonly performed (rated as performed most
times or always by less than 20% of nurses):
1. Allow family members to stay in patient’s rooms
General ICU (19 beds) caring for
cardiovascular, medical, surgical, and
neurological patients. Percentage of
neuro patients not reported.
Single site
Self-report of role performance
activities
47
Frid,
Bergbom
&
Haljamäe
2001
Qualitative
Phenomenolo
gicalhermeneutic
analysis
(descriptiveinterpretative
approach) of
14 narratives
17 family
members of
11 patients
who
experienced
brain death;
total of 14
narratives
were provided
because some
families chose
to tell their
story together
during treatments or procedures
2. Allow family to visit as long as they wish
3. Involve family members in patient care
4. Discuss effect of critical illness on children at
home and offer suggestions re: how to explain it
First structural analysis revealed 5 themes, 3 potentially
relevant to the period prior to brain death declaration:
1. Lack of preparedness for the sudden illness
2. Contradictory experiences of encounters in the
ICU, some encounters were positive, others
negative
3. Feeling abandoned by the HCPs and by the
patient
Second structural analysis revealed three time periods
with 4 main themes. First and second time period and
three themes are relevant to the period of time preceding
declaration of brain death:
First time period: Before intensive care
 Main theme: the disquieting event, characterized
by:
o The sudden change (news that pt is ill,
which triggers anxiety)
o The growing seriousness (intuitive feeling
that situation is serious)
o The great chaos (difficulty believing that
something so serious has occurred)
Second time period: During intensive care
 Main theme 1: the uncertain vigil, characterized
by:
o The encounter with my loved one (seeing
the patient, which can be frightening and
confirms seriousness; ICU efforts may also
create sense of security)
o The encounter with myself (need to do
something, need for hope but awareness
that a bad outcome is possible)
o The encounter with the carers and my
support network (need to share feelings
and have physical/emotional needs met,
encounters with outside world. Differing
Possible bias as those with a more
negative view may have been more
likely to participate.
Complexity of analysis
48
Keenan &
Joseph
2010
Qualitative
n = 25 family
members of
15 patients
with severe
TBI
44 interviews
Time One
(within 4 days
of discharge
from the ICU)
Time Two
reports of interactions with carers –
positive included caring, supportive,
offering information, empathy while
negative included lack of respect, lack of
interaction)
o The encounter with the surrounding world
 Main theme 2: the arduous struggle,
characterized by:
o The difficult realization (that death has
occurred even though the pt shows classic
signs of life like circulation and appears to
be breathing; facilitated by time for
realization to occur)
o The difficult end (characterized by
suspiciousness that efforts were focused
on organ donation, feeling excluded
because of OD-related care, and no
opportunity to say goodbye after
mechanical ventilation stopped)
o The good end (included OD when wishes
of deceased were known and that OD
helped another person, and the chance to
see the body after MV removed)
A trajectory was identified, consisting of the following
time periods:
1. Getting the news: associated with intense
emotional response; receive news, inventory
injuries, first look at patient
2. Uncertainty: initially re: pt’s survival, which
created need for physical proximity. Three phases
of uncertainty: not knowing (survival, how
severe), waiting (for info, for pt to wake up), and
uncertainty (of prognosis and how much lives
would change)
3. Making sense of the news: themes included
receiving information about the injury, receiving
professional support, looking for progress, and
holding on to hope.
4. Moving on: following transfer out of ICU, starting
to integrate information and think about life
Family members interviewed
individually so needs identified may
vary from what would have been
obtained if interviewed whole family.
Potential for sampling bias based on
which family members agreed to
participate (but only 3 of 28 family
members did not want to participate).
Large number of female caregivers so
may not reflect male caregivers.
Single unit at a Level 1 Trauma Center
adjustments that would be needed
Needs of the Family (four themes identified, 2 of which
are relevant to the initial period after brain injury):
1. Involvement in care: immediately after injury
(days/weeks) all focus was on patient, almost
constant presence at bedside; supportive handson activities gave families made family feel
involved and close to relative.
2. Looking for progress: Extremely vigilant for signs
of improvement, hope/optimism associated with
moments at which loved one connected with the
environment
63
Kesselring
, Kainz, &
Kiss 2007
Qualitative
Grounded
n = 40 (family
members of
33 BD patients
Responding to the Family’s Needs:
Needed information and emotional support from
professionals, and emotional/instrumental support from
family and friends
1. Information: Need for information on injuries and
prognosis that was consistent, understandable,
honest, and updated frequently. Specific to their
relative versus statistics/probabilities.
2. Professional support: Trust established when
relevant, understandable information was
provided in a consistent and caring way. Trust
reinforced by positive interactions, diminished by
negative ones. Supportive actions included access
to patient, comfortable environment, responsive
staff. Other characteristics associated with
support were confidence, upfront/honest,
responsive to family requests, provided
reassurance, early identification of needs, and
respect for individual. Negative interactions – staff
who did not know the patient or made them feel
insecure about care provided.
3. Community support: Practical and emotional
support, visiting, calling. Sometimes found
number of phone calls overwhelming
Families progress through 4 stages; 2 of these stages are
relevant to CBI:
1. Initial encounter: characterized by high emotional
Potential for selection bias: limited to
family members of patients who were
declared brain dead, and all families
theory
49
59
Lam &
Beaulieu
2004
Lefebvre
et al 2005
Qualitative
Descriptive,
exploratory,
multi-case
design
Qualitative
Retrospective
Constructivist
paradigm
who were
approached
re: OD; 31
consenting
and 9 nonconsenting)
n = 13 family
members of 7
patients with
non-traumatic
brain insult
n = 53 total
8 patients with
mod/severe
TBI
14 family
members
22 HCPs (nonMD)
9 MDs
distress and conflicting information by different
providers, difficulty comprehending the situation
and the medical interventions
2. Receipt of bad news
“Bedside Phenomenon”: families had two motivations for
being at the bedside:
1. Best care – to ensure that their loved one was
receiving the best care possible
a. Three strategies used to ensure best care:
i. Information seeking through
monitoring **Wanted
information regardless of
whether it was positive or
negative. Unknown seen as
frightening.
ii. “Pitching in” so that the patient
received the best care possible by
“being the mouthpiece for the
patient and for the HCPs”
iii. “Fitting in” by developing
relationships with the staff
2. Connection – to maintain a connection with their
loved one
a. Tried to reconnect by being physically
present, using physical contact, speaking
to the patient, empathy, and seeing
patient as they used to be (personal care
items, pictures, talking about their loved
one)
Five themes characteristic of the experiences of
individuals with TBI, their family members, physicians, and
other HCPs:
1. Information (communication and sharing of
information) related to TBI, disabilities, and
prognosis
a. Information transmission is limited at all
stages
b. Information often vague
were approached regarding organ
donation
Observations and interviews recorded
using field notes, introducing potential
for bias; information from discussions
with HCPs was used to confirm and
supplement the data
Small convenience sample
Time limitations – unable to recruit
enough family members to reach data
saturation or to validate final version
of findings with family members; thus,
unable to determine if the findings
truly capture the experience of
families at the bedside in the neuro
ICU
Heterogeneity of participants
(different duration of ICU stay,
different types of relationships to pt –
i.e. spouse, parent, child)
Most patients recovered
Small sample size
Relied on recall/reports of participants,
which may have been affected by
multiple factors
May be impacted by variation in TBI
severity, and variation in coping
mechanisms
62
Lefebvre
& Levert
2006
Qualitative
Retrospective
Constructivist
paradigm
Same data set
as Lefebvre
2005
Same as above






2. Uncertainty (experienced by all involved) as a
consequence of lack of information
a. Physicians/professionals did not divulge
uncertainty to pts/families
b. Majority of pts/families said that this
undermined confidence (“hiding
something from them”)
c. Families reported not feeling supported in
their experience of uncertainty.
d. Result was that relationship was
weakened btw pt/family and
physicians/HCPs
3. Relationships (btw individual with TBI and care
team, btw family members and care team, and
btw members of the care team)
a. Family members report positive
relationships with care team when they
listen, recognize family
experience/knowledge, and provide
support in stressful times.
b. Relationships within the inter-disciplinary
team seen as essential. Importance of
common vision. Lack of communication
seen as biggest barrier.
4. Continuity of care and services – accessibility to
services adequate during critical care and
rehabilitation.
Pts/families felt information was limited, often
insufficient, imprecise, or not provided.
Lack of information makes situation more difficult to
absorb and increases difficulty for the family.
HCPs felt related to state of shock
HCPs reported that lack of information may reflect
uncertainty on the part of the HCPs. Fear of being
wrong when providing information about outcomes.
Difficult for HCPs to deal with reaction from
pts/families to “bad news”.
Lack of information/vague information from HCPs
complicates family’s adjustment process, causes
Small sample size
Relied on recall/reports of participants,
which may have been affected by
multiple factors
May be impacted by variation in TBI
severity, and variation in coping
mechanisms
60
Long,
Clark &
Cook
2011
Qualitative
descriptive
n = 10
surrogates, 5
made decision
to withdraw
support and 5
did not
frustration, undermines confidence in HCPs, and
compromised trust.
Three themes related to surrogate decision making:
1. Reliance on internal and external resources to
inform decision making
a. Internal: faith, intuition, possible
trajectories of patient’s recovery/decline
b. External: prior conversations with patient,
conversations with medical team about
prognosis, statistics (prior discussions with
patient allowed use of substituted
judgment and thus eased decision
making)
c. Sought validation for decisions by
discussing them with other family
members
d. Decision influences not divided by
themes:
i. Prior conversation
ii. Prognosis
iii. Quality of life
iv. Burden of treatment
v. No decisions
vi. Prayer
vii. Gut instinct
viii. Statistics
2. Frustration with physicians’ limited availability
and communication skills, and role of an
alternate health care professional
a. Praised efforts of medical staff to save
patient’s life, but reported that medical
staff were inaccessible and/or had poor
communication skills (insensitive
language, blunt delivery, limited
availability)
b. Important for physicians to be present not
only as clinicians but also as people
c. Described need for a resource to spend
time with family when physician
unavailable, who could provide medical
6 surrogates were interviewed via
phone
Interval between time decisions were
made and time of interview (although
this is a recommended qualitative
research approach)
information and support
d. Led to feeling that they lacked adequate
information to make decisions
3. Appreciation for ICU nurses’ help understanding
the nature of patient care
a. ICU nurse played essential role in helping
them understand what was happening to
the patient. Nurse important resource
because of availability for questions and
to provide information about condition,
interventions, and monitoring equipment.
51
Mathis
1984
Comparative
descriptive
n = 26 family
members, 15
of patients
without acute
brain injury
and 11 of
patients with
acute brain
injury
58
Merritt &
Evans
1990
Exploratory
descriptive
n = 35 families
of individuals
with TBI
Mirr
Exploratory
66
n = 19 family
Top ten needs statements for family members of patients
with acute brain injury (CCFNI):
1. To feel that hospital personnel cared about my
relative
2. To know that I would be called at home if there
were any changes in my relative’s condition
3. To know exactly what was being done for my
relative
4. To be reassured that the best care possible was
being given to my relative
5. To have my questions answered honestly
6. To be told how my relative was going to be
treated medically
7. To receive information about my relative’s
condition at least once a day
8. To feel accepted by hospital personnel
9. To feel there was hope
10. To have specific facts concerning my relatives
prognosis
 Families more satisfied with acute/initial care than
follow-up care (rehabilitation, NH, other).
 34% felt that they had enough contact with
physicians in the hospital
 40% were offered written information during
acute/initial care and 34% at follow-up; 2/3
reporting that they understood that information
Description of decisions made by family members with
Small sample size
Limited information about methods
1991a
(AACN
Clinical
Issues)
descriptive
Content
analysis using
data matrix
Used 6
question
interview
guide
Same data set
as Ref 66 but
emphasis of
this article is
on the nature
of the
decisions
made by
family
members
members of
11 patients
with severe
TBI
Also
interviewed
attending
neurosurgeon
and primary
nurse at same
time intervals
as family
members
(when
possible)
focus on nature of decisions made by family members. 60
decisions were made.
Five types of decisions:
1. Medical treatment decisions made up 21 of the
60 decisions. Examples: transfer patient, consents
for treatment.
2. Personal decisions affect family members other
than the patient. Examples: diet, sleeping
arrangements, return to work, care of other
children. 23 of 60 decisions.
3. Financial decisions could involve either the
patient or family. Examples: insurance coverage,
replacing car, return to work. 14 of 60 decisions.
4. Ethical decisions included two types:
discontinuation of life support and organ
donation. Discussed by families of 4 patients but
families did not have to make decision.
5. Legal decisions made up 2 of the 60 decisions.
One was procurement of legal counsel and other
related to establishing POA/guardianship.
Time frame for decisions (only 1st 72 hrs included here):
 15 different decisions were made in the 1st 24-48
hours
a. Medical treatment, including transfer to
trauma center, consent for treatment,
consent for surgery
b. Personal, including travel, transfer of
other family members, return to work,
and a few others
c. Financial, including financial coverage and
return to work
d. Most were medical, then personal
 Between 48 and 72 hours, three decisions
(medical, personal) Note: in table, only two
decisions are listed
Three categories of decision-makers:
 Family members
 Non-family members
 Decisions not made at all
66
Mirr
1991b
(Heart &
Lung)
Exploratory
descriptive
Content
analysis using
data matrix
Used 6
question
interview
guide
Same data set
as Ref 69 but
emphasis of
this article is
on the factors
that influence
the decisions
made by
family
members
24
O’Callaha
n et al
1995
Descriptive
n = 19 family
members of
11 patients
with severe
TBI
Also
interviewed
attending
neurosurgeon
and primary
nurse at same
time intervals
as family
members
(when
possible)
Families and
chief
neurosurgery
residents of 47
patients with
severe TBI
(GCS < 8)
GCS range 3-7,
mean 5
Other aspects of decisions:
 Duration of effect (short-term versus long-term,
with long-term defined as greater than 24 hours)
 Difficulty in making decisions: more difficult to
make long-term decisions. Long-term decisions
secondary only to ethical decisions.
60 decisions were identified by family members.
 Decisions were categorized into medical
treatment, personal, financial, ethical, and legal.
 Six factors: personal functioning, relationships,
information, uncertain outcomes, environment,
and emotions affected decisions
 Pt proximity important
 Wanted daily updates
 Felt nurses filled in information gaps left after
discussions
 Relationships with friends, ministers, chaplains
important
 Info given to them was able to be repeated but
when asked what it meant, the meaning was not
grasped.
 Inability to predict outcomes decision making
difficult.
 Cognitive dysfunction more dominant concern
 If knew what would do if ethical decisions
required had had previous discussions w/ pt
 Visiting restrictions influenced personal decision
making
Descriptive statistics about prognosis,
withdrawal/withholding of LST, and family perceptions of
communication with physician
 Agreement between physician and family
perception of prognosis in 22/24 cases
 Both families and physicians identified an
“inevitably poor prognosis” as the key
consideration for withdrawing/withholding LST
Assessment of communication
 Family’s perception of prognosis matched
physician in 22/24 cases from time of ICU
Small sample size
Convenience sample from one
institution
One institution
Based on recollection versus
observation
Potential for self-fulfilling prophecy
50
Payne et
al 2010
Cross-sectional n = 28
qualitative
purposely
exploratory
sampled
stroke (AIS,
Used
ICH, not SAH)
principles of
patients plus
constant
25 family
comparison;
members of
Substantive
other stroke
issues
patients
identified and
assigned a
13 acute
code
stroke pts with
high disability
15 acute
stroke patients
with low
disability
admission for patients in whom LST was
withdrawn/withheld
 16% of the family’s understanding of the
prognosis relayed by the physician was
incongruent with the prognosis the physician
intended to communicate
 clear and consistent communication by the
physician was “of great value to them”
Two main themes:
Communication and information provision
Important factors:
 Flexibility and availability
 Information clarity
 Good inter-personal skills
 Honesty
 One specific recommendation to improve
communication was to provide a “named contact”
who could reinforced information from all care
providers
Facing uncertainty and end of life preferences
 Family members noted uncertainty about
prognosis from medical staff and some recognized
associated challenge of communicating this for
HCPs
 Families used advanced age as a marker for the
possibility of impending death
 Even when prognosis was poor (including death),
family members appreciated resolution of
uncertainty
 Honesty (even when uncertain) was important to
family members
 Transitions (in goals of care, or transfer plans)
created negative perceptions, fear that patient
would be abandoned
 Major concern for family members at end of life
was that patient not be in distress (peaceful and
dignified)
 Family members appreciated opportunity to be
involved in decision-making such as DNR
Two hospitals in one city
Variable stroke severity

52
Prachar et
al 2010
Prospective
descriptive,
using survey
methodology
n = 111 family
members of
patients
admitted to a
12 bed neuro
ICU with a
neurological
diagnosis or
impairment
55
Price et al
1991
Descriptive
n = 213 family
members of
114 patients in
two units (a
surgicaltrauma ICU
and a
neurological
ICU)
Used 30 item
version of
CCFNI
Enrolled family
members 2472 hours after
ICU admission
64
Schats et
al 2003
Descriptive
n = 49 patients
and 47 family
Family members felt that hospital was an
appropriate environment for death. Desired
private room, not only due to own desire for
privacy, but for desire to shield others in clinical
environment from dying person.
Top ten needs:
1. To have questions answered honestly
2. To be assured that the best possible care is being
given to the patient
3. To know specific facts concerning the patient’s
progress
4. To know the expected outcome
5. To know that the patient’s pain is being addressed
(this needs statement is one of 6 added to the
original CCFNI by the researchers)
6. To know exactly what is being done for the patient
7. To be called at home about changes in the
patient’s condition
8. To receive information about the patient at least
once a day
9. To know how the patient is being treated
medically
10. To feel that the hospital personnel care about the
patient
All needs rated as important or very important.
Included families/nurses from surgicaltrauma ICU and neurologic ICU, but
Top 6 needs:
unclear how many of the patients had
1. To have questions answered honestly
neurological illness or injury
2. To be assured that the best possible care was
being given to the patient
All critical care, but no additional
3. To feel that hospital personnel cared about the
information about severity
patient
4. To have explanations given in terms that are
Single center
understandable
5. To know specific facts about the patient’s
All needs rated as important or very
condition
important
6. To know how the patient was being treated
38% of patients who provided consent for previous study
Prolonged and variable duration of
recalled participating in a study.
time since consent process.
Structured
interview of
patients/famil
y members
who
previously
participated in
clinical trials
post SAH
53
Tin,
French, &
Leung
1999
Descriptive
Interviewed
participants
using Chinese
version of
CCFNI
Purposive
sampling
members who
previously
participated in
one of two
studies on
management
of SAH at one
center (time
since
participation
averaged 20
months (range
7 to 31
months)
n= 52 family
members and
36 nurses in 3
neurosurgical
units in Hong
Kong; all
patients (n =
33) admitted
for ≥ 48 hours
and
mechanically
ventilated or
GCS < 8
80% of relatives who provided consent for previous study
recalled study participation.
Both groups had limited recall of the information provided
during the consent process.
Top ten needs identified by family members:
1. To be called at home about changes in the
patient’s condition
2. To know the expected outcome
3. To be assured that the best possible care is being
given to the patient
4. To know specific facts concerning patient’s
progress
5. To have questions answered honestly
6. To feel there is hope
7. To know how the patient is being treated
medically
8. To feel that the hospital personnel care about the
patient
9. To receive information about the patient at least
once a day
10. To talk to the doctor every day
Nurses tended to underrate needs identified by family
members as important. Largest difference in importance
on the following needs statements:
1. To receive information about the patient at least
once a day
2. To talk to the same nurse every day
3. To talk to the doctor every day
4. To feel there is hope
Variation in LOS in unit (25 of 52 = 2-5
days, but remainder as long as 45
days)
Different data collection methods
utilized for family members (interview)
versus nurses (paper survey)
61
Nine needs reported as unmet by at least 20% of family
members:
 7 of these 9 were ranked in the top half of needs
identified by family members
 5 of 9 were related to proximity, 2 of 9 to
information, and 2 of 9 to support
 Need that was most often reported as unmet
(52% of family members) was “To have a specific
person to call at the hospital when unable to visit”
Satisfaction with overall care:
 Carers – 92% satisfied (of whom 66% expressed
dissatisfaction with at least one component of
care)
 Bereaved carers – 94% satisfied (of whom 53%
expressed dissatisfaction with at least one
component)
Satisfaction with level of information provided:
 Carers – 42.5% just the right amount, 29% not
quite enough, 21% too little, 6% far too little
 Bereaved carers – 62% just the right amount, 26%
not quite enough, 9% too little
Wellwood
, Dennis,
& Warlow
1995
No discreet information about severity
of stroke
Not limited to first 72 hrs of care
Used un-validated survey
Summary of Evidence: Mixed Methods (With Treatment Intervention)
Reference
Number
Source
Study
Design
Study Participants
Treatment
Interventions
Outcome Measures
Limitations/Assessment of Study
Quality
67
White
et al
2012
Singlecenter,
single-arm,
intervention
al
Mixed
methods
analysis
(quantitativ
e
descriptive
and
qualitative)
35 surrogates and 15
physicians of 15
patients in a neuro
ICU with acute
respiratory failure
and high risk of
death/functional
impairment. Patient
had to be > 50 yo,
lack decision-making
capacity, APACHE II
of at least 25 or
greater than 50%
chance of long-term
severe functional
impairment per
attending
Surrogates for 16
patients were
enrolled but one pt
died just after
enrollment and prior
to intervention
Random sample of 10
surrogates and 5
physicians
participated in a
semi-structured
interview (at 1 week
after enrollment for
surrogates and at
time of pt’s death or
d/c for physicians)
Four Supports
Intervention:
incorporated a
family support
specialists into
health care
team. Focus on
4 types of
support:
Emotional
support
Communicatio
n support
Decision
support
Anticipatory
grief support
Accessibility and Perceived
Effectiveness:
 All physicians and all surrogates
would recommend the
intervention to a friend in a
similar situation
 Intervention improved the
quality/timeliness of
communication, facilitated
discussion of the pt’s values and
treatment preferences,
improved/eased the hospital
experience for the family,
improved clarity about pt’s goals
of care, and improved the
patient-centeredness of care
Communication and Decision-MakingProcess Measures:
 Mean time spent by FSS/day on
care activities = 48 min
 Concordance between
perception of prognosis:
o Before intervention,
chance of severe
functional impairment
at 6 months was
estimated at 66% by
surrogates and 88% by
physicians
o After intervention,
chance of severe
functional impairment
at 6 months was
estimated at 84% by
surrogates and 88% by
physicians
Themes identified by surrogates related
to benefits of intervention:
 Provides emotional support
No control arm so cannot establish
efficacy.
Did not assess bedside nurse
perceptions
Single ICU
Unable to collect information about
families who did not consent



Ensures timely communication
Provides anticipatory guidance
Increases patient-centeredness
of care
 Maintains availability for
families
 Bridges lay and medical
knowledge
Themes identified by physicians related
to benefits of intervention:
 Provides high-level
communication skills
 Prepares clinicians for families’
questions/concerns
 Ensures timely communication
 Enables difficult conversations
 Focuses on the patient’s values
 Increases the ease and
efficiency of communication