FEA TUR ES /R

Comprehensive psychosocial care of cancer
patients: Screening for distress in family members
by Anita Mehta and Marc Hamel
ABstrAct
Family members have multiple roles when
caring for someone diagnosed with cancer. The burden associated with these roles
can result in family members experiencing elevated levels of emotional distress
including depression, anxiety, and physical
complaints. For comprehensive psychosocial care to be all inclusive, the well-being
and distress levels of family members must
also be addressed. To date, little is known
about the specific sources of distress for
family members.
The purpose of this research study was
to fill this gap. Specifically, the researchers
developed a unique screening tool to identify sources contributing to family members’ emotional distress. The study was
conducted in three phases: 1) a comprehensive literature review was done to elicit
a first set of items, 2) two separate focus
groups of health care professionals and
family members were held to obtain their
feedback on possible items that would comprise the tool and, 3) a sample of family
members was invited to speak to the relevancy of the proposed items. Results from
these analyses led to a tool comprising 46
items. Family member responses on these
items suggested that they are often confronted with unique sources of distress
including those related to self-care, patient
care, and relational.
C
ancer affects the entire family.
While emotional distress experienced by cancer patients is widely
studied (Graves et al., 2007; McLean
& Jones, 2007; Sellick & Edwardson,
2006;
Zabora,
BrintzenhofeSzoc,
Curbow, Hooker, & Piantados, 2001),
the distress of the family members is
often overlooked. Yet, the rates of distress experienced by family members
of oncology patients have been shown
to be elevated. For instance, using
the Distress Thermometer, a team of
researchers reported that 29.2% and
18% of family members of oncology
patients experienced moderate and high
levels of distress respectively (Zwahlen,
Hagenbuch, Carley, Recklitis, & Buchi,
2008).
Additionally, research suggests that
family members’ distress tends to
increase during specific time points
across the disease trajectory (Murray
et al., 2010). Finally, a patient’s overall
coping is said to be positively related to
ABout tHe AutHors
Anita Mehta, RN, PhD, Clinical Nurse Specialist and Co-Director, McGill University
Health Centre, Montreal, QC
Marc Hamel, PhD, Clinical Director, Psychosocial Oncology Program, McGill
University Health Centre, Montreal, QC
Correspondence: Anita Mehta, 1650 Cedar Avenue T6-301, Montreal, QC
Tel: 514 934-1934 ext 44815; Fax: 514 934-8593; Email: [email protected]
FundinG AcKnoWledGement
The Nursing Research Development Fund, with the generous support of the Newton Foundation and
matching funds provided by the Montreal General Hospital, Royal Victoria Hospital and Montreal Children’s
Hospital Foundations (McGill University Health Centre).
CANADIAN ONCOLOGY NURSING JOURNAL � VOLUME 25, ISSUE 3, SUMMER 2015
REVUE CANADIENNE DE SOINS INFIRMIERS EN ONCOLOGIE
the well-being of the family members
(Northouse, 2012). Based on the
population of family members seen in
our psychosocial oncology program, we
argue that comprehensive patient care
must also take into account addressing
the needs of family members who are
directly involved in the cancer experience
of their loved one. At present, all new
patients and family members who
are seen by a clinician in the program
are invited to complete the Canadian
Problem Checklist (CPC) (Cancer
Journey Action Group, 2009) to help
identify the sources of their distress.
While the CPC was not specifically
designed for family members, we were
using it to obtain some information on
what they identified as sources of distress
for them. Family members had noted
and provided us with feedback that they
felt the tool was not entirely applicable
to them. They felt that not all of their
sources of distress were identified, or
they felt the sources of distress listed
were very patient-specific. In order to
address this concern, we recognized that
the development of a screening tool for
these family members was a necessary
first step in the provision of optimal care
to these family members.
The purpose of the present study was
to develop a screening tool designed
to identify the distress level of family
members with a list of their specific concerns. The study was completed in three
phases. First, a comprehensive literature review was conducted on sources
contributing to emotional distress in
family members. Second, separate
focus groups of health care professionals in oncology and family members of
cancer patients were conducted. Goals
of these focus groups were to: 1) review
the preliminary items generated from
the literature review, 2) solicit suggestions of additional or removal of items
and, 3) provide feedback on the Family
357
FEATURES/RUBRIQUES
BrieF communicAtion
FEATURES/Rubriques
Member Problem Checklist (FMPC).
These focus groups were audio-taped
and transcribed. The content of these
groups were coded and relevant themes
were extracted. Finally, a sample of
N=106 family members recruited from
oncology clinics were asked to rate the
relevancy of the FMPC items to their
overall experience.
The screening tool resulted in 46
items (see Figure 1). The results of
this research indicated that, like cancer patients, family members reported
sources of distress related to practical (e.g., transportation/parking), emotional (e.g., anxiety/worry), social/
family (e.g., lack of support), informational (e.g., about prognosis) and spiritual domains (e.g., faith). However,
family members also reported unique
sources of distress relevant to them
including those related to relational
(e.g., relationship with the patient),
self-care (e.g., managing one’s own
time) and patient-care (e.g., managing
patient’s symptoms).
The study also asked participants to
respond to qualitative questions pertaining to their experience in completing
the screening items. Many felt strongly
that the new “checklist covers most concerns a family member might have” and
that it was “clear” and “easy to read.”
The average time of completion was 7.6
minutes and a range of time needed to
complete the FMPC, from 30 seconds to
20 minutes was noted by reading their
REFERENCES
Cancer Journey Action Group (2009). Guide
to implementing screening for distress, the
6th vital sign: Moving towards personcentered care. Retrieved from www.
canadianpartnershipagainstcancer.ca
Graves, K.D., Arnold, S.M., Love, C.L.,
Kirsh, K.L, Moore, P.G., & Passik,
S.D. (2007). Distress screening in a
multidisciplinary lung cancer clinic:
Prevalence and predictors of clinically
significant distress. Lung Cancer, 55(2),
215–224.
McLean, L.M., & Jones, J.M. (2007). A
review of distress and its management in
couples facing end-of-life cancer. PsychoOncology, 16(7), 603–617.
358
Family Member 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
Mehta & Hamel, 2015
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
Figure 1
qualitative responses. These responses
on the qualitative questions suggested
that the FMPC was easy for them to
complete and they found to be a meaningful tool for them.
Family members are often considered the “hidden patient” in oncology
settings. They are often required to
deliver different types of care to patients,
without any former training and recognition, and are expected to be continuously supportive during the patient’s
illness. As a result, family members can
become easily overwhelmed, anxious
and/or depressed. The development of
this clinical tool specifically designed to
screen for the sources of distress experienced by family members is the first
step towards a more comprehensive
assessment of their distress and, likely,
that of the patient. This assessment/
screening places nurses, and all health
care professionals, in a stronger position to provide optimal support and
appropriate family interventions in the
future.
Murray, S.A., Kendall, M., Boyd, K., Grant,
L., Highet, G., & Sheikh, A. (2010).
Archetypal
trajectories
of
social,
psychological, and spiritual wellbeing
and distress in family care givers of
patients with lung cancer: Secondary
analysis of serial qualitative interviews.
British Medical Journal, 340, 2581.
Northouse, L.L. (2012). Helping patients
and their family caregivers. Oncology
Nursing Forum, 39(5), 500–506.
Sellick, S.M., & Edwardson, A.D. (2006).
Screening new cancer patients for
psychological distress using the hospital
anxiety and depression scale. PsychoOncology, 16(6), 534–542.
Zabora. J., BrintzenhofeSzoc, K., Curbow,
B., Hooker, C., & Piantadosi, S. (2001).
The prevalence of psychological distress
by cancer site. Psycho-Oncology, 10(1),
19–28.
Zwahlen, D., Hagenbuch, N., Carley, M.I.,
Recklitis, C.J., & Buchi, S. (2008).
Screening cancer patients’ families
with the distress thermometer (DT): a
validation study. Psycho-Oncology, 17(10),
959–66.
Volume 25, Issue 3, Summer 2015 • Canadian Oncology Nursing Journal
Revue canadienne de soins infirmiers en oncologie