Transcript Telephone Triage as an Intervention: Making a Connection

Family Member Distress:
A New Screening Tool for Nursing Assessment
AQIO
Le 26 novembre, 2014
Anita Mehta, Ph.D.
Marc Hamel, Ph.D.
Programme psychosocial en oncologie
Centre universitaire de santé McGill (CUSM)
Montréal, Canada
Reconnaissances
• Le Fonds de développement de la recherche en sciences
infirmières (Nursing Research Development Fund), soutenu
grâce à la générosité de la Fondation Newton et grâce à des
fonds de contrepartie versés par les fondation de l'Hôpital
général de Montréal, de l'Hôpital Royal Victoria et de l'Hôpital
de Montréal pour enfants (Centre universitaire de santé
McGill)
Histoire
• Clinical and research data indicate that cancer
affects the whole family
• Despite this fact, little data is available on the
distress experience by family members
• The research that is available suggests that
family members of cancer patients often
experience distress levels comparable
or higher than those of the patients
Histoire
• Research shows that patients ’ physical, cognitive,
emotional, and social distress contributes to the primary
caregiver’s own increase in distress
• Empirical studies have shown that family caregivers are
at risk for major stress, anxiety, and depression
regardless of gender, age, and ethnicity, potentially
leading to negative physical and financial repercussions
• Family members who are responsible for the care of the
patient also must manage sources of distress such as
their own anticipatory grief, anxiety, depression, and
fears
“
“Excuse me…Is this
for me to fill out, or
my wife?”
Why a new tool?
• We must be able to screen and identify the main
sources of concerns related to the family
members’ distress and experience
• There are no existing tools that specifically
identifies the sources of distress experienced by
family members of cancer patients
• A proper and timely screening of distress
represents a critical intervention that helps
identify those family caregivers at risk for
psychosocial complications
Purpose of the Study
• To develop a screening tool specifically designed
to identify the sources of distress in family
members
1) Development of a Family Problem Checklist
(FPC)
2) Test its psychometric properties (i.e. validity)
Methods: Phase 1
Tool Development: Item Generating
• A three step process was followed for scale
development (item selection) of the Family
Problem Checklist-FPC
1.Literature Review
2.Focus Groups (healthcare professionals)
3.Focus Groups (family members)
Family Problem Checklist: Sources of Distress
Relationships (social-family interactions)
•Trust with the physician
•Intimacy with patient
•Challenging relationship with the
patient
Practical
•Finances
• Negotiating the system
•Transportation
•Lack of support from family-friends
•Legal
•Work-Studies
•Household duties
Physical health
•Attention span/memory
•Fatigue/sleep
•Frailty/weakness
•Concentration
•Appetite
Spiritual
•Loss of hope
•Questioning my beliefs –faith
•Making sense of this (meaning)
•Loss of faith
•Loss of meaning and purpose
•Patient care
•Home care
•Coordination of care
•Managing patient symptoms
•Changing health status
•Care demands
•Making medical decisions for patient
•Giving medication
Communication
•Communicating with patient
•Communicating with other family
members
•Communicating with medical team
•Unsure how to talk about certain things
(e.g. death)
Family Problem Checklist:
Sources of Distress
Emotional
• Anger
• Fear
• Sadness
• Stress
• Nervous
• Isolation/alone
• Hope
• Frustration
• Guilt
• Lack of confidence in ability to care
for patient
• Shock
• Helplessness
• Anxiety
• Worry
• Feeling Overwhelmed
• Difficulty accepting diagnosisprognosis
Self-Care
•No time for self
Information
•Unsure how and where to access care
•Can’t process information
•Can’t manage/organize information
•Lack of information related to the
disease
•Lack of information related to
treatments
•Lack of information related to
prognosis
Other
•Dealing with patient’s distress
•Coping
Methods: Focus Group-Healthcare
Professionals
• An electronic invitation sent to MUHC health
care professionals working in oncology
• Key players in oncology including: physicians,
nurses, psychiatrists, nutritionists, social
workers, pastoral care workers, and
psychologists
• moderated by research assistant and audio
recorded
Methods: Focus Group-Healthcare
Professionals
The goals of these focus groups:
1) Review the preliminary items generated from
the literature review
2) Solicit their suggestions of additional items
3) Obtain an overall impression of the FPC with
respect to wording
Methods: Focus Groups- Family
Members
• Solicited feedback on the FPC items derived from
the literature review and earlier focus groups
made up of the health care professionals
• Family members were recruited from the McGill
University Health Centre (MUHC) Psychosocial
Oncology (PSO) program.
• Approached by the PSO ’ s administrative
assistant who presented the study brochure
• Facilitated by research assistant and audiotaped
Feedback on the checklist: Family
Members
• “It’s much better than
the other one”
(Canadian Problem
Checklist)
• “…but overall its really
more geared towards
[me]… I can answer it on
behalf of myself…it’s
much clearer”
• “…it says ‘hey, family,
you know, we support
the family’ “
• You’ve got to nail it down
to the individual itself.
And you know, realising
full well that the person
that’s suffering from the
disease is into their own
thing. But the person on
the side is also suffering
with a lot these
problems.”
Sources of Distress: Family Members
• “Time management,
more than anything
else.”
• “Physical exhaustion…I
have to start taking care
of me….But the mental
aspect too, you know.
My wife is suffering from
cancer. What do I do? I
mean the negative
thoughts, you have to
sort of dispense with
them very quickly.”
• “…that’s clear signs of
depression. We all, I
mean I get it, there’s no
question. I’m fighting it,
I’m fighting it everyday.
• “[all this]pre-mourning
stuff…”
Sources of Distress: Family Members
• “So that I’m not leaving
him alone, because I felt
guilty leaving…so I’m still
taking care of myself [at
home] and that guilt of
going away is
diminished. You know,
because I schedule
things at a time when he
is resting. Or you know,
and I’m home so if some
crisis should occur, I’m
right there. ….
• “…because of energy, I
mean just washing the
dishes. I don’t have the
desire. It’s just too much
time is spent with him
that I never… and it’s
always sad.”
Family Problem Checklist:
Please check all of the following items that
have been a concern or problem for you in the
past week, including today
Practical
Finances
Legal Issues
Transportation/Parking
Household duties
Taking care of others
Work/Studies
Managing my own time
Information
About the disease
About the treatment
About prognosis
About supportive resources
Communication
Acting as a spokesperson
Difficulty talking about certain topics
Emotional
Sadness
Anger/frustration
Anxiety/worry
Guilt
Feeling overwhelmed
Helplessness
Shock
Resentment
Social
Feeling alone
Lack of support
Expectations from others
Relational
Change in social roles
Relationship with patient
Relationship with health care team
Family dynamics
Spiritual
Faith
Meaning and purpose
Hope
Death/Dying
Self-Care*
Sleep
Appetite
Concentration/Memory
Fatigue/Weakness
Intimacy/Sexuality
My own physical health problems
My own mental health problems
Finding time for myself
Coping
Patient Care
Managing patient symptoms
Managing patient medications
Organising patient appointments
Caring for the patient at home
Self-confidence as a caregiver
Phase 2: Testing and Validation
• The revised FPC undergoing psychometric testing
• A sample of 106 family were recruited in a
second phase of this study to conduct several
psychometric tests for the FPC
1) Demographic Data
2) Frequencies of relevancy of item
3) Factor Analysis
4) Qualitative questions
Demographic Data
106 FAMILY MEMBERS
Mean age 49.71
Gender:
• Male: 35.6%
• Female: 64.4%
Relationship:
Spouse 44.3%
• Child 32.1%
• Parent 5.7%
• Other 17.9%
Education:
• University: 46.7%
• College 27.4%
Ethnicity:
• Italian: 19.4%
• French Canadian
14.3%
• Canadian 12.2%
0-10%
11-20%
21-30%
31-40%
•
•
LEGAL ISSUES
•HOUSEHOLD DUTIES
•
FINANCES
TRANSPORTATION
PARKING
•
RESENMENT
•WORK/STUDIES
•
•
•
FEELING ALONE
•
ACTING AS A SPOKESPERSON
•
•
LACK OF SUPPORT
•
DIFFICULTY TALKING ABOUT
CERTAIN TOPICS
•
CHANGE IN SOCIAL ROLES
SADNESS
TAKING CARE OF
OTHERS
•
ANXIETY
•
MANAGING MY OWN
TIME
•
RELATIONSHIP
WITH PATIENT
•
ANGER FRUSTRATION
•
CARING FOR
THE PATIENT
AT HOME
•
MEANING AND PURPOSE
•
HELPLESSNESS
•
FEELING
OVERWHELMED
•
APPETITE
•
SHOCK
•
FAMILY DYNAMICS
•
INTIMACY/SEXUALITY
•
EXPECTATIONS FROM OTHERS
•
HOPE
•
MY OWN PHYSICAL HEALTH
PROBLEMS
•
RELATIONSHIP WITH HEALTH
CARE TEAM
•
DEATH/DYING
•
•
FAITH
CONCENTRATION/MEMORY
•
SLEEP
•
FATIGUE
MY OWN MENTAL HEALTH
PROBLEMS
•
COPING
•
FINDING TIME FOR MYSELF
•
MANAGING PATIENT’S
SYMPTOMS
•
MANAGING PATIENT’S
MEDICATIONS
•
SELF-CONFIDENCE AS A
CAREGIVER
•
ORGANISING PATIENT’S
APPOINTMENTS
•
INFORMATION
•
ABOUT
RESSOURCES
•
•GUILT
41-50%
INFORMATION ABOUT
DISEASE
•
INFORMATION ABOUT
TREATMENT
•
INFORMATION ABOUT
PROGNOSIS
Factor 1
Information about the disease
Information about the treatment
Information about the prognosis
Information about supportive resources
Difficulty talking about certain topics
Factor 4
Managing patient symptoms
Managing patient medications
Transportation/parking
Caring for the patient at home (F3)
Self-confidence as a caregiver (F3)
Factor 5
Expectations from others
Relationship with patient
Relationship with health care team
(F1; F9)
Family dynamics
My own mental health problems
Factor 2
Anxiety/Worry (F1)
Sadness
Anger/frustration
Guilty
Feeling overwhelmed
Shock (F1; F10)
Helplessness
Resentment
Feeling alone (F9)
Lack of support (F5)
Change in social roles (F4)
Intimacy/sexuality (F10)
Factor 6
Sleep (f4)
Appetite
Concentration/memory
Fatigue/weakness
Factor 3
Household duties/Chores
Taking care of others
Work/studies
Managing my own time (F8)
My own physical health
problems (F5)
Factor 7
Faith
Meaning and
purpose
Hope
Coping (F5)
Factor 9
Legal Issues
Factor 8
Death/dying
Finding time
for myself (F2)
Factor 10
Finances
Acting as a
spokesperson
(F1)
Phase 2: Testing and Validation
Qualitative questions
1. Can you describe how long it took you to
complete the Family Members Problem
Checklist?
2. Can you describe any concerns or stressors
that were not identified on the checklist you
completed
3. Can you describe if the checklist was easy to
read? For example, were there some words
that were difficult to understand?
4. Is there anything you feel should be changed?
Results: Phase 2
2. Can you describe any concerns or stressors that were
not identified on the checklist?
• “None. Not at all”
• “No checklist very complete”
• “Change with relationships in the family”
• “Fertility concerns, we are both quite young”
• “Expectations we have of ourselves”
• “Lack of understanding of the implications of taking
care of a sick relative by people close to the caregiver.”
• “Concurrent stressors”
• “Family member roles”
Results: Phase 2
3. Can you describe if the checklist was easy to read? For
example, were there some words that were difficult to
understand?
• “Very easy, it’s well done”
• “It was easy to read”
• “Perfectly clear”
• “Some ambiguity.” (did not state where, however)
• “Thoughtful but easy”
Results: Phase 2
4. Is there anything you feel should be changed?
• “the checklist covers most concerns one family
member might have”
• “I don’t see anything about where the patient is in
their treatment. For example, I was much more
stressed at the beginning.”
• “Maybe making available on electronic form like a
tablet”
• “Yes, must include questions about role”
• “French version of distress graphic”
Comparison of Checklists: What
did we learn?
• There are some concerns or sources of distress
that are applicable to both the patient and the
family caregiver
• There are specific concerns that are unique to
family caregivers that are not identified on the
current family problem checklist
• Family members reported that they felt their
distress was validated, and that there was
support available to them
Future Directions
• Further research and fine tuning of the
checklist (ex. removal of redundant items)
• Further validation of the checklist
• Translation into French
• Endorsement and support to have it used
at other sites
Conclusion
• Family members reported that the Checklist was
easy to complete
• Family members reported they felt the Family
Member Problem Checklist is relevant to their
personal experiences
• Further testing needs to be done to determine if
the new tool is a valid one to accurately screen
family members for their sources of distress