FEA TUR ES /R

by Margaret I. Fitch, Kittie Pang, and Danielle VandeZande
ABSTRACT
Interest in measuring patient-reported
outcomes has been growing within cancer
care facilities. In particular, community-based agencies want to identify appropriate patient-reported outcomes to use in
evaluating their programs. Willow Breast
Cancer Support Canada undertook a
series of interviews with staff, peer volunteers and clients to identify the most relevant patient-reported outcomes for their
telephone peer support service. Both process and outcome variables were identified
as relevant for future measurement. The
approach utilized and the outcomes identified could serve as a model for similar organizations to implement.
C
ancer and its treatment have significant emotional, psychosocial, spiritual, and practical consequences for
individuals (Fitch, Porter, & Page, 2008).
Having relevant, meaningful information and support has been cited by cancer survivors as critically important in
helping them cope with these consequences (Fitch, Porter, & Page, 2008).
In particular, peer support is seen as a
key source of relevant information and
emotional support for breast cancer survivors (Fitch, Nicoll, & Keller-Olaman,
2007; Raupach & Hiller, 2002).
ABOUT THE AUTHORS
Margaret I. Fitch, RN, PhD,
Professor, Bloomberg Faculty of
Nursing, University of Toronto,
Toronto, ON
[email protected]
Kittie Pang, BSc(Hons), Research
Coordinator, Sunnybrook Health
Sciences Centre, Toronto, ON
[email protected]
Danielle VandeZande, Senior
Manager, Support Services and
Community Engagement, Canadian
Breast Cancer Foundation, Toronto,
ON
[email protected]
Willow Breast Cancer Support
Canada is a pan-Canadian service
designed to provide peer support and
information to individuals experiencing
breast cancer-related concerns. The primary mode of peer support delivery is
via telephone with trained peer support
staff and volunteers. These individuals
respond to concerns across the cancer
journey from pre-diagnosis to diagnosis and treatment, through follow-up
survivorship care and/or palliative care.
In operation since 1994, Willow’s vision
is that all people in Canada affected by
breast cancer will have timely access to
unbiased information and compassionate support.
There is growing interest on the
part of cancer care agencies to evaluate whether they are delivering services
as planned and achieving anticipated
patient results. Patient-reported outcomes (PROs), conceptualized as
changes in an individual’s health status or condition, are seen as important
in answering these questions (Given &
Sherwood, 2005). Willow Breast Cancer
Support Canada undertook a project to
identify the most relevant patient-reported outcomes for its telephone-based
peer support service. This unique initiative for community-based, staff/volunteer-delivered support could be a model
for other community cancer support
services.
BACKGROUND
Willow’s Peer Support Telephone
Service
Willow’s peer support telephone service is open to all callers with a breast
health concern. Each call is answered
by a Willow staff member or a trained
volunteer, all of whom are breast cancer survivors. The support team works
together with a professional librarian
offering an integrated service whereby
clients can access verbal or written
information via e-mail or regular mail.
On average, the service responds to 60
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calls per month (not including email
requests) and the calls last between five
and 60 minutes.
During a call, the Willow staff member or volunteer begins by seeking to
understand the reason for the call and
the caller’s specific situation. Based on
the individual’s need, the staff member
or volunteer might share their own perspective about their experiences (e.g.,
diagnosis, side effects, follow-up care,
coping strategies, practical suggestions
and tips on interacting with health care
professionals), or share information
about breast health/cancer (not medical
advice).
If the staff member or volunteer is
not equipped to address the information a caller requests, they may refer
the caller to another individual within
the organization (i.e., librarian, another
volunteer with a more similar experience to that of the caller), to another
organization (e.g., Wellspring, Gilda’s,
Canadian Cancer Society) or resources
on the Internet (e.g., websites and
online communities). Staff and volunteers are expected to understand and
assess client concerns from the perspective of the caller and balance giving emotional support versus providing
information based on the caller’s needs.
Program Evaluation Measurement
Historically, measurement in health
services program evaluation focused
primarily on structure and process metrics or indicators, with some attention
to client satisfaction. More recently,
patient-reported outcomes (PROs) are
increasingly utilized as an important
means of using standardized measures
to capture the patient’s perspective. The
most commonly recorded PROs clinically are physical indicators (i.e., pain,
nausea, fatigue, etc.) although recording of psychosocial PROs (i.e., anxiety, depression, etc.) is occurring with
greater frequency. During the past
decade, cancer centres have started
using PRO tools to measure and track
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FEATURES/Rubriques
Identifying patient-reported outcomes of
telephone-based breast cancer support services
FEATURES/Rubriques
psychosocial and symptom distress
with a view to stimulating person-centred cancer care delivery (Canadian
Partnership Against Cancer, 2009).
Community-based centres are now
seeking to identify the PROs best suited
for program evaluation within their
realm of care delivery. Communitybased centres may have programs delivered by health care professionals or by
trained volunteers and PROs need to
be identified that are appropriate for
each type of delivery. Outcomes ought
to be identified in relation to the specified objectives for the programs, the
expected end result, the resources available, and the mode of delivery. To date,
PROs for volunteer/peer-based telephone support/information services
have not been reported.
PURPOSE AND OBJECTIVES
Ultimately, the agency wanted to
monitor its peer support telephone
service on a regular basis. However,
prior to implementing a data collection
approach, the most relevant variables to
measure for the specific service needed
to be identified. The work reported in
this article was conducted to identify the
relevant PROs for a peer-provided, telephone-based information and support
service related to breast cancer.
METHODS
Using a descriptive qualitative methodology (Thorne, 2007), we sought to
understand current experiences with
the Willow peer support telephone service to help isolate relevant outcomes
for the service. In-depth interviews were
conducted with staff, trained volunteers,
and individuals or clients who had used
the service. Understanding the program
delivery experiences of the staff, volunteers, and callers identified the results
achieved through this particular mode
of delivery. Approval was obtained from
Sunnybrook Health Sciences Centre
Research Ethics Board.
Recruitment: The agency’s staff members assisted in the project design and
implementation. Their participation
included one interview about their
experiences responding to the Willow
callers.
116
The executive director of the agency
sent an invitation letter to the peer support volunteers. The research assistant
followed up with the volunteers to explain
the study, answer any questions they had,
and seek their consent to participate. If
they agreed, the research assistant organized a convenient time to conduct an
interview either in person or over the
telephone. The staff and volunteer interviews were completed and analyzed prior
to conducting the client interviews.
Client recruitment occurred by
Willow staff at the end of a telephone
call. All clients were considered eligible
for invitation to participate unless, in
the view of the staff member who had
handled the call, the request would be
inappropriate because of the caller’s
level of distress, English comprehension,
or they had already been approached to
participate. Two staff members were
involved with all of the calls during the
data collection period. The client was
informed the study was being conducted to understand the client’s experiences with the service. For those who
were interested in learning more about
the study, their name and contact information was recorded with their permission and shared with the research assistant. The research assistant contacted the
client to explain the study fully, respond
to any questions, and seek consent for
one interview. If the client caller agreed,
arrangements were made to conduct the
interview over the telephone.
Table 1: Staff/volunteers demographics
(n = 10)
Gender
100% Female
Age
Average = 55.1 yrs.
Range = 35 to 78 yrs.
Education
70% Post-Secondary
30% Post Graduate
Current Role 60% = Staff
40% = Volunteers
Years of
Service
Average = 7.85 yrs.
Range = 1 to 18 yrs.
verbatim transcripts were subjected to
a standard qualitative descriptive content analysis (Thorne, 2007) by two individuals (PI and RA) experienced in this
type of analysis. Interview transcripts
were reviewed independently and marginal notes made about the observed
content. Subsequently, perspectives
about the content were shared through
discussion, similar ideas grouped, and
key ideas isolated within the categorized content. Final results were summarized by the PI. Ultimately, common
perspectives across all three groups of
interviewees (staff, volunteers, clients)
were drawn together to reflect the overall ideas about the relevant patient outcomes for the telephone-based peer
support service.
RESULTS
Interview guide: A semi-structured
interview guide was designed by the
investigators and Willow staff members for the purposes of this study. The
interviews provided an opportunity for
the participants to describe their perspectives about the telephone service:
how it operates, what happens during
a telephone call, and outcomes of the
interaction. All interviews were conducted by the same individual (research
assistant) who had qualitative interview experience and was not part of
the organizational staff. Each interview
was audio recorded and transcribed
verbatim.
Perspectives from Staff Members and
Volunteers
Six staff members and four volunteers were interviewed. The participants
were all female and ranged in age from
35 to 78 years (average 55.1 years). They
had between one and 18 years of service
(average 7.85 years) with Willow (See
Table 1). Both staff members and volunteers expressed very similar ideas,
experiences, and perspectives about the
Willow telephone service. The results
will be presented for the 10 staff and
volunteer interviewees together, with
notable differences in perspectives
highlighted.
Analysis: The staff/volunteer interviews
were analyzed prior to conducting the
client caller interviews. In all cases, the
Reasons callers contacted Willow
Willow is seen as responding to
needs for information and support for
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In many instances, as the calls proceed, discussions will incorporate
aspects of both support and information. A call motivated by the need for
emotional support will evolve into sharing of information or vice versa. It can
be difficult to separate the support and
informational needs addressed during
the call, given the interwoven nature of
the conversations.
• …somebody will phone in that they
want to know where to buy a wig…
but there’s another layer beneath
that to get to. The wig is sort of an
excuse to call… and every phone call
that you take is new… need to listen to what is being said, the tone of
voice… it is easier sometimes if you
are with someone one-to-one to recognize where they are in terms of
fear, grief, joy… but to recognize it
on the phone and you can respond to
it… that’s another skill.
• Every call is different… most from
those who are newly diagnosed
where the predominant theme
is fear, how to manage that fear,
explaining, sort of the navigational
piece, what they can expect in terms
of seeing a surgeon, and the possibility of chemotherapy and radiation
therapy, what the treatments are
designed to do, which is to reduce the
risk of recurrence.
The majority of the calls are from
women who have been diagnosed with
breast cancer and are facing treatment
decisions or are receiving treatment,
or from their family members on their
behalf.
• It is helpful to women to hear it
from someone who has been through
it… there is so much anxiety when
you are first diagnosed. And to speak
to someone who understands how
anxious you are, well, it kind of validates their emotions. Normalizes
them; to know you’re not going
insane if you cry and then all of a
sudden you feel brave. And the next
second you are crying again. Then
you are angry… fearful… Willow
offers a shared experience and the
ability to provide information.
Experiences with calls (focus and
process during calls)
Willow staff/volunteers described
the process during the calls of listening carefully, letting the caller identify
what they wanted to discuss, and trying to respond in a supportive and compassionate manner. They often recalled
their own experience and what they
found helpful at the time of their original diagnosis and try to incorporate this
into their calls.
• A lot comes up in the calls about
the women feeling a lack of control
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of their lives… waiting to hear back
from doctor’s offices… dealing with a
sense of isolation… you need to know
that is part of the journey… and take
people back to that normal thing, to
help them manage.
During the course of any one call,
there can be a range of topics discussed.
The staff/volunteers answering the calls
try to respond to the needs of the callers,
but are not entirely certain what direction a particular call may take at the
onset. They need to be prepared to follow the lead of the caller.
• People call and sometimes they get
into what is critical right away and
to what is really bothering them.
But most of the time, there’s a background reason for the call and you
sort of have to affirm what they’re
feeling… you listen to what they are
sharing and mirror it back… there’s
rarely a call that doesn’t have a layer
to it… and you might have to work
through things to get to it… and
there can be lots of needs beyond the
breast cancer experience.
The discussions during the calls may
include physical, psychosocial, spiritual, and practical topics, as well as the
disease and treatment-related issues.
Examples of physical topics include
dealing with side effects, medications,
menopause, genetics, and surgery/
reconstruction. Psychosocial topics
can include dealing with fear, worries,
anger, frustration, grief, and anxiety.
Spiritual topics may cover aspects of isolation, feeling alone, and joy. Practical
topic examples are dealing with
finances, navigating the cancer care system, or finding services (e.g., wigs, prostheses). Interviewees emphasized that
no medical advice is given to callers; client callers are encouraged to ask medical questions of their family physician,
oncologist or cancer nurse. Callers often
look for a different type of conversation than the ones they would have with
health care professionals.
• …Just simply talking to somebody who is quote, ‘an expert on it
because they have been through it’,
it offers a sense of reassurance…you
can ask a professional these questions, but I mean, first of all, they
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FEATURES/Rubriques
all callers, regardless whether the caller
was a patient, survivor, family member,
friend, member of the general public,
or healthcare professional. In the words
of one interviewee, “It is really a service
for everyone with an interest in breast
cancer.” The service is seen as providing trustworthy, credible information
either through telephone conversations
or via written material sent by mail or
electronically. It provides a trained individual who has been through the same
situation and who can “…listen to the
whole person”. Conversations are private and personal, and can be held in
complete anonymity if the caller wishes.
The staff/volunteer participants
described a wide range of reasons why
clients contact Willow. The clients will
often start a conversation by identifying one type of request as their reason
for calling, but the conversation often
evolves to include other emotional or
information issues. They could be crying and expressing a sense of panic at
the onset of the call or have a specific
question they want to ask.
• [we get] all kinds of calls… people
who are looking for information
about financial support, women who
just want you to listen, women who
are really depressed, women who do
not know what to do next or what
to expect, or women who are angry.
It can be husbands of those kinds of
women, or grown children of these
women. It can be anything that’s
related to breast cancer in anyway
or… even people who didn’t even
have breast cancer, but they knew
Willow was a reputable source and
they just wanted a link, or to be
aware of links in their community.
FEATURES/Rubriques
may be too busy to talk to you…or
maybe you feel embarrassed to ask
the question…it’s a bit embarrassing
to say, ‘Well, actually, I am really
feeling depressed and lonely; I’m
afraid nobody will love me if I have
no breasts…you feel you can perhaps talk to another woman about
it, that’s because it’s something she
would understand.
Outcomes of calls/interactions
Willow staff/volunteer interviewees identified a range of both process and outcomes for the telephone
exchanges. They described what ought
to be achieved during the process of the
call itself (i.e., what should the Willow
staff/volunteer be trying to do during
the interaction), as well as the end result
of the interaction (end result of the call
or what the caller ought to be feeling/
thinking/behaving at the finish). These
ideas expressed are outlined in Table 2.
For the most part, the staff/volunteers focused their reflections about
outcomes on psychosocial variables.
Reducing distress was cited as a primary
end result of the telephone exchange.
Satisfying the need for information
could contribute to reducing the distress
felt by the caller, but often the Willow
staff/volunteer interviewees thought the
manner in which the call was handled
was a key factor in achieving the outcome for the person who called.
• I hope their questions are
answered. If there is a factual thing
they want to know, I am looking
to meet that need… to have them
internally be saying, ‘yes, OK, that
makes sense, that’s the information I
needed.’ I am looking for them to be
able to feel that, you know, just emotionally satisfied that they’ve been
understood and their need, whatever
that need was… for empathy, the
need for this sort of sense of being, of
being supported… I hope that’s what
they come away with.
• I hope that women… just feel somewhat more comfortable in being
able to make a decision about what
they’re going to do… that they’ll have
the information that… allows them
to move forward… in dealing with
the whole problem.
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Table 2: Outcomes identified by Willow staff/volunteer interviewees
Outcomes Achieved
During
telephone
interaction
(how interaction
ought to be
handled or
conducted)
•Listen and mirror back (reflection)
•Freedom to ask questions
•Allow to go to a deeper level
•Provide a place where they can ‘check-in’
•Provide a space where they can connect/link; connect them with
services; refer them to other agencies based on need/questions
•Create comfort so they feel they can call back
•Release emotions
•Support them in decision-making
•Provide encouragement
•Meeting people where they are – let them define their needs
•Allow to talk and be heard by another
•Talk with someone who understands what they are going through; talk
with someone who was there (went through the same thing)
•Provide tailored information and support
•Identify questions they can ask their doctor
•Clarify information (facts)
At end of
telephone
interaction (what
the call ought to
achieve)
•Validate (experiences are real)
•Normalize (feelings are normal/ not going crazy)
•Make it easier for them [to cope/manage]
•Received relevant, meaningful, understandable, up-to-date
information
•Decreased sense of hopelessness; feel hope
•Help them help themselves (empower)
•Feel more in control
•Feel a sense of community, being supported, meaning; feel a sense of
shared experience
•Decrease anxiety; less dread; feel a sense of relief
•Feel they can move on
•Have information to enable better decision-making
•Feel reassured
• That women have the ability to
speak, tell their story… to feel they
can open up and tell us about their
concerns. And to call back if they feel
down or have another concern… and
we will listen.
• We can help them tap into their
own reserves, maybe they didn’t even
know they had, and help to put them
on a path that they can have their
needs attended to… navigating them
a little.
Perspectives from Client Callers
During the three weeks of data collection, 59 peer support telephone calls
were handled by Willow staff and 38
client callers were invited to participate
in the project. Of the 30 names given to
the RA, 20 individuals were contacted
within 15 days of their call to Willow
and all agreed to participate. Interviews
were conducted by telephone and
lasted between 10 and 40 minutes.
All but one of the 20 clients interviewed were female and 16 had been
diagnosed with breast cancer. The one
male was a family member. The client callers ranged in age from 29 to
71 years (average 54.2 years). Of those
who had breast cancer, the diagnosis occurred between one and 18 years
ago (average 2.8 years). Eleven of the
client callers were married. Seven had
completed high school and another
seven had completed university. Fiftyfive percent (55%) lived in the Greater
Toronto Area, while an additional 45%
lived in other parts of Canada (See
Table 3).
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Gender
95 % Female (n=19)
5 % Male (n = 1)
Age
Average = 54.2 yrs.
Range = 29 to 71 yrs.
Location
9 = Toronto
2 = London
1 = Ajax, Hamilton,
Huntsville, Kingsville,
Montreal (QC), Ottawa,
Richmond Hill, Thornhill,
Tofield (AB)
Education
Level
30 % Some postsecondary (n=7)
35% Post-secondary (n=7)
35% Post Graduate (n=7)
Diagnoses
80% Diagnosed with
Breast Cancer (n=16)
20% Not Diagnosed with
Breast Cancer (n=4)
Year Since
Diagnoses
Average = 2.8 yrs.
Range = 1 to 15 yrs.
Marital
Status
53% Married (n=10/19)
37% Single (n = 7/19)
5% Common Law (n = 1/19)
5% Separated (n=1/19)
• I was scared and I was confused
and I had all kinds of questions and
I was angry.
In terms of the need for information,
client callers described a wide range of
topics they wanted to know about (e.g.,
treatments, reconstruction, what to
expect when they went to the hospital
or cancer clinic, clarification about terminology, “checking out what I heard
at the clinic, what my doctor told me”).
However, many called looking for both
support and information.
• I called for both information and
support…I was going through treatment, you know, and wanted to
know what to expect, their experiences, just feeling out the unknown
and what to expect.
• I called for both support and information…I was stunned. A lot of
words had been thrown at me…I
needed someone to explain those
words. I did not have a good understanding…I needed someone to help
me sort things out.
Reasons for calling
The callers described their initial reason for calling Willow as either the need
for support or the need for information.
They described the need for support, at
any point along the continuum of the
breast cancer journey, as wanting to
talk to another woman who had experienced the same things or who had gone
through the same situation as themselves. They described feeling ‘stunned’
by the breast cancer diagnosis, whether
a new or a recurrent one, and being
‘thrown’ by learning of its existence.
Feeling worried, scared, fearful or ’in a
panic’ were cited frequently as the motivation to call Willow.
• I was panicking because I was
afraid that I had a recurrence, and
she [staff member] had a very calming effect on me.
Callers emphasized that, although
their calls had been made regarding a
need for either support or information,
the conversations often evolved to incorporate both needs. Giving support often
included the provision of information
while the discussion of information frequently included responses to emotional
concerns. Caller felt the interactions often
covered a number of topics and fulfilled
both information and support needs.
• I asked a lot of questions and
they were able to answer them. So
it worked quite well…it started out
being purely informational but I
think it became supportive as we
chatted…we talked about the ramifications of reconstruction and
what the surgery involved and what
the recovery time involved, the pros
and cons I suppose of having it and
why, I guess, I would have it…I felt
very positive, and felt they had laid
the information out very clearly and
honestly, and I felt better after it.
• I called for support. I was having
one of those worry days where I just
really felt sort of fearful and I didn’t
want to reach out to friends or family. I did not want to worry them.
Experience with calls (focus and process
during calls)
Clients characterized their calls as
being answered promptly and not having to “…wait on hold.” If the first person
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to answer was not able to respond to
their specific request, another individual was brought onto the call quickly
or arrangements were made for someone to return the call in a short time
period. They described their experience
during the telephone call as being ‘listened to with compassion and understanding’. They found the Willow staff/
volunteer answering the call was supportive, calm and respectful, listened to
their concerns and “…not judging me.”
The exchange included being able to
talk about their concerns, as well as hear
about the experiences of other individuals who had been diagnosed with breast
cancer. They did not feel rushed or pressured by the Willow staff/volunteer to
finish the conversation. They found the
Willow staff/volunteer was eager to help
them and work through their concerns
with them. In the words of one client
caller, “I felt like I had all the time in the
world to talk with her.”
• It was a place where people really
understood what you were going
through, because they had been
through it themselves, and they were
able to talk to you on your level…
They just put things into a, well,
into a perspective that put your
mind at ease, as much as could be at
that point.
• …But they listened and were able
to help me consider different factors,
you know, as I had to make a decision. No one can make the decision
for me. But they were supportive
in helping me make the decision…
compassionate.
• …they were courteous and respectful. And, also, tried to be as objective as possible. The person shared
her own experience and tried not to
influence me in anyway, just tried
to provide whatever information she
could… she had a lot of understanding on the subject…
• They were understanding, and you
know they were helpful. They let you
talk, they listen, you know, providing
good inputs, suggestions. You know,
overall I think it was great… it was
an equal conversation… it wasn’t all
one-sided… they didn’t rush you off,
you know.
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FEATURES/Rubriques
Table 3: Client demographics (n = 20)
FEATURES/Rubriques
Clients reported Information was
provided in relation to what they
needed. Clients consistently described
the value they felt in talking with someone who had been through the same
experiences.
• I think it was great [the way the
information was provided]. It was
informal, but it was very, um, she
listens well, she gives information;
also, that she can tell about her own
experience. It makes it more interesting than just getting fact and information from someone who cannot
relate to the experience because the
person had not gone through the
same problem or challenges.
• …I felt so uplifted and really grateful I was able to reach out to someone who has been through the same
experience and who had been cancer
free for such a long time. It made me
feel a lot stronger so that I didn’t feel
I needed to sort of worry or burden
my family and friends…
Three client callers found the conversation helpful, but added a concern.
Two would rather have had a connection to an individual whose experience
was more closely aligned to their own
situation (e.g., similar genetic testing
procedure, similar timeframe). One felt
the conversation went on too long.
• The only thing that I would have
hoped for is maybe finding someone who is more recent in going
through the experience… maybe
finding someone who is closer in age
and also in the timeframe… having someone who had gone through
it recently… you know, treatments
are… maybe a little different.
• At one point, I wanted to end the
conversation and she wanted to give
me more and more information. She
wasn’t terribly sensitive to where I
was at in the conversation.
Outcome of interaction
As outcomes of the interaction process, callers described feeling comfortable, supported, and understood.
The manner of the conversation and
the responses from the Willow staff/
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Table 4: Outcomes identified by client caller interviewees
Outcomes Achieved
During telephone interaction (how
interaction ought to be handled or
conducted)
•Feeling comfortable, supported
•Feeling listened to, understood
•Feel openness to talk, ask any question
•Not hurried to finish call
•Able to talk things through/weigh pros and cons
•Did not feel judged
At end of telephone interaction (what
the call ought to achieve)
•Felt more calm, less stress
•Gained new insight, perspective, new
understanding
•Felt in a better position to make a decision, to
take action
•Got the information I was looking for
•Information was relevant, understandable,
meaningful, up to date
•Felt more hopeful, encouraged, reassured
volunteer resulted in a feeling of being
heard and understood (see Table 4).
• She was incredibly knowledgeable.
She had years as a cancer survivor…
very up to date with the latest treatments. She knew what I was talking
about, and was incredibly open about
her sort of recovery, and completely
identified with my fears and worries… she was incredible, respectful,
and she was incredibly open… very
understanding and empathetic.
As outcomes or end results of the
calls, a range of indicators were identified (see Table 4). Callers talked about
having received the information they
had been seeking and understanding
what they had been given; feeling better,
calm, more relaxed, and able to handle
their situations. Some talked about the
telephone exchange as helping to “…put
my mind at ease” or “…brought me out
of my spiral”. They described having
been helped and felt satisfied at the end
of the exchange.
• The information was really well
done… In terms of putting together
the information, organizing it, I
found it very helpful because I have
a bit of brain fog. So, organizing the
information is really important for
my ability to understand it and not
get frustrated…
• They gave me the encouragement to
fight on and to keep my attitude up.
• …I can handle things, more
relaxed now, because I had that support from Willow.
• The conversation calmed me… It
was good to talk about what was
bothering me… I got the information
I needed.
Some callers described how they felt
in a better position to make a decision,
as a result of the call. They had been
able to weigh the pros and cons of their
potential decision based on the information and support they received. Others
described how the telephone exchange
gave them “…new insight”, and “…new
things to think about”. Comments such
as, “It put my mind at ease”, “I felt I had
a new perspective on things and a new
understanding”, and “It refocused me”,
reflected the combined result of receiving the support and information. The
conversations added to their knowledge
about breast cancer, treatment options,
and undergoing treatment.
• They actually helped me to work
through that situation… they gave
me another perspective to think
about it, what was going on… they
didn’t criticize me. They listened to
me and then they tried to help me
figure it out, you know?... I feel I am
more able to care for myself now, to
see what’s really going on and ask
the right questions. I feel I can move
forward.
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Revue canadienne de soins infirmiers en oncologie
Potential Indicators
Structure
indicators
•Number of calls (in designated time period)
•Type of calls (frequency of reason for calls)
•Who places the call (number of patients at specific point in cancer journey,
family members, etc.)
•Number of staff/volunteer trained to answer calls
•Number of calls answered by each volunteer (mean or average)
•Number of calls in specific languages
•Number of return callers
•Hours of operation (telephone line/calls per hour of operation)
•Geographic location of calls (where does caller live)
•Documentation system for call available (in use)
•Responses were sensitive and compassionate, supportive, non-judgmental
Process
interaction •Responses were aligned with caller’s identified concern or question
indicators •Felt a sense of shared experience
•Felt listened to and understood
•Felt free to ask any question, talk about any topic, open to say what I
wanted to say
•Length of time for calls (average, range)
•Time for call to be answered/returned
•Topics covered in the calls
•Number of referrals (to which agencies)
Patient
reported
outcome
indicators
•Received relevant, meaningful, understandable, up-to-date information/
trustworthy, credible information
•Decreased anxiety; felt more calm or relief; felt less agitated; felt less panic/
less fear
•Feel encouragement/hope; less hopelessness; more reassured; knew I could
call again
•Call was perceived as helpful (able to make use of the information and/or
support)
•Feel better able to move ahead (make a decision, know what to do)
•Felt a different or new insight or perspective
•Feel more in control (of self and/or situation) and empowered
•Feel connected to a community; less isolated
•Satisfaction with call/exchange (process of call and reason for call was
achieved)
One individual indicated the outcome of the call was not satisfactory.
The exchange with the Willow staff/
volunteer was seen as supportive and
the information that was provided was
clear, but the caller’s specific request for
financial help was not a program available through the agency.
Satisfaction with the telephone
exchange
Client callers rated their satisfaction with the telephone exchange on a
five-point scale with 5 reflecting ‘very
satisfied’. The average rating was 4.8
(range 4 to 5). When asked, ‘What was
most satisfying about the telephone
interaction?’, the most frequently shared
response was, “…being able to talk with
someone who had gone through the
same situation”. The callers described
feeling a sense of shared understanding through talking with someone “…
who had been there”. They felt the person who had gone through the same situation shared a common set of feelings
and emotions. The individual who was
calling hardly had to find the words to
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Revue canadienne de soins infirmiers en oncologie
describe what had happened to them
or what they were feeling because the
person answering the call “…already
knew what it was like.” That the person
responding to the call had been in the
same (or very similar) situation added
credibility to the comments.
• When I called, she really understood my frustration with the situation… I felt I was really talking
with someone that really understood the challenges, the issue, and
could understand the difficulties of
the situation… And that was really
comforting. She really gets it—and
because of the way she was answering, I totally trusted her.
Some callers thought it was significant and reassuring that all the individuals who responded to the calls were
survivors. That women had survived the
disease and treatment was seen as hopeful and encouraging for the newly diagnosed individual.
• …When I hear, you know, 20-something years, a 15-year survivor, a
13-year survivor, and I think she had
the same type of cancer I share… we
can talk!!
Other callers described the most
satisfying aspect of the call as the
compassionate, understanding, and
knowledgeable nature of the exchange.
When the callers shared their experiences and feelings or asked their questions, they felt heard and understood by
the staff/volunteers. The way the Willow
staff/volunteer responded felt supportive and non-judgmental. Callers felt
they could talk about any topic and the
person was open to listening.
• She was able to provide emotional
support. She was able to sort of talk
me through the diagnosis, the treatment, the recovery, in ways that were
also clinical, very scientific. So there
was that concrete basis. It wasn’t
just, ‘Oh, I know how you feel’. But
there was, ‘I can give you grounding.’ Like, not to let your imagination run away with you, keep
things in perspective. She also had a
lot of respect for the fact I was very
emotional at the beginning of the
conversation…
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FEATURES/Rubriques
Table 5: Potential indicators for evaluating program performance: structure indicators
were generated by the project team while the process and PRO indicators emerged from
the client interviews
FEATURES/Rubriques
Some callers described being “…
able to talk things through…” and “…
sort things out…” as a most satisfying aspect of the telephone exchange.
Receiving information and talking over
the pros and cons in a non-judgmental
manner was significant to the callers. In
the words of one woman, “They did not
criticize me… they listened and tried to
work things through with me.”
COLLATION OF IDENTIFIED
OUTCOMES
Throughout the interviews with
the staff, volunteers and client callers,
insights were shared about the outcomes achieved by this telephone-based
program. Table 5 presents the commonly identified outcomes observed
across
all
interview
transcripts.
However, it was clear that the process
indicators are also important. The interviewees indicated that the actual interaction during the telephone call has a
strong influence on the final outcomes.
Meeting the needs of the caller was
important, but the way in which the conversations were handled was a key factor in the success of the call. The actual
responses and interaction were critically
important if the client caller was to feel
heard and validated.
DISCUSSION
This qualitative project was undertaken to identify relevant patient-reported outcomes (PROs) unique to
a peer support, staff/volunteer-delivered telephone service. The interviews
with staff/volunteers and client callers
offered very similar insights through
the telephone interactions, identifying
both process and end result indicators.
Several key insights bear emphasis in
light of their relevance to future measurement of the service.
Firstly, all interviewees saw the service as existing to provide emotional
support and information. However,
they perceived the support and information offered through the service was different than what would be provided by
healthcare professionals. A conversation
between two individuals who share the
common experience of being diagnosed
with breast cancer is seen as a different
type of conversation than one between
122
a healthcare provider and patient. This
perspective about peer support and
the unique role it plays for individuals
has also been expressed in the literature (Davison, Pennebaker, & Dickson,
2000; Helgeson, Cohen, Schulz, &
Yasko, 2000). The future measurement
challenge is to identify the metrics
that would capture the unique aspects
appropriately.
Secondly, all interviewees saw the
manner in which the call was handled (i.e., process during the call) to be
a key factor in achieving the desired
end results. The timeliness of responding, sensitivity, compassion, knowledge
about the topic and patient experiences,
capacity to listen and understand, and
being non-judgmental were seen as
contributing to the client callers’ feeling
of being heard and supported, and their
concerns understood and validated. The
ability to enact the desired processes
during the call is linked to the preparation of the staff/volunteers. Any training
program for staff and volunteers ought
to be designed to ensure capability and
skill in responding sensitively, compassionately, and without judgment.
Thirdly, the calls need to be responsive to the individual client situation.
Each caller can have a different specific reason for calling. The staff/volunteers need to be prepared to follow the
lead of the caller and respond to a wide
range of concerns. Their listening skills,
assessment capacity, and ability to be
flexible within the context of the call are
critically important for success. These
aspects also have clear implications for
training of those who are responding to
callers.
However, the relevant questions
related to measurement of process indicators include: (1) is it valuable for a program to measure the process aspects on
a regular basis and, (2) what are the specific tools to measure these variables in
this situation? Real time measurement
would require monitoring the telephone
calls as they are happening. Perhaps a
less invasive type of approach would be
to follow up with callers after the interaction by survey or interview.
Finally, the outcomes of the telephone exchange must align with the
reason the caller initiated the call. There
was clear recognition that, in many
instances, the caller may reach out with
one question or concern, but the interaction covers other topics or issues. The
interplay of support and information
is a key element of these exchanges.
Clearly emotional distress can be generated through misinformation, misinterpretation, or lack of information. By
the same token, facing a cancer diagnosis, making a decision about treatments,
or dealing with side effect challenges
brings a level of distress that can be
reduced by provision of information.
Trying to separate these two issues for
measurement purposes could present
challenges.
IMPLICATIONS FOR
PROGRAM DESIGN
The interviews provide insight
regarding the capacity of the Willow
telephone-based service to meet the
objectives for which it was designed.
Client callers clearly indicated the service was helpful and they were highly
satisfied with the exchanges. The most
satisfying aspects were ones around
which the service is actually designed—
having a peer responder, having a survivor responder, having an individual who
can truly understand what the caller is
going through, and having a compassionate and sensitive response, and having relevant or meaningful information
provided. The data support the idea that
the program is achieving its outcomes
and being delivered in the manner in
which it was designed.
IMPLICATIONS FOR
PROGRAM MEASUREMENT
The implications for measurement
of patient reported outcomes, the original purpose of the project, revolve
around identifying the most relevant
variables for measurement and deciding
how to capture those on a routine basis.
Table 5 outlines program indicators
(variables) identified through this study
that could be measured.
Structure indicators relate to the
nature and magnitude of the service demand together with the service resources available to meet that
demand. The indicators listed in Table
Volume 27, Issue 1, Winter 2017 • Canadian Oncology Nursing Journal
Revue canadienne de soins infirmiers en oncologie
REFERENCES
Canadian Partnership Against Cancer.
(2009). Cancer System Quality Index
(2010). Toronto: Cancer Care Ontario.
Davison, K.P., Pennebaker, J.W., & Dickson,
S.S. (2000). Who talks? The social
psychology of illness support groups.
American Psychologist, 55, 205–217.
Fitch, M.I., Porter, H.B., & Page, B.G. (2008).
Supportive Care Framework: A foundation
for person-centred care. Pembroke,
Ontario: Pappin Communications.
5 reflect information and support needs
being met on a short-term basis (i.e., the
need that motivated the call was actually met for the caller), as well as the
potential for longer term results (i.e.,
feelings generated, behaviour possible).
The challenge for an organization is to
determine the outcomes (e.g., depth or
downstream activity) for which it wishes
to be held accountable. As an example,
the individual caller may report information as helpful at the end of a call,
but never actually make use of it; or an
individual might say they have a plan to
talk with their doctor and ask a series
of questions based on new understanding of a topic area, but never take that
action. When an organization embarks
on a pathway to measure patient-reported outcomes, it is critically important to discuss the specific reasons for
the measurement, the plans for use of
the data, and for what end result the
organization wishes to be held accountable (i.e., how far downstream in the use
of information and resulting behaviour
Fitch, M.I., Nicoll, I., & Keller–Olaman,
S. (2007). Breast cancer information
dissemination strategies: Finding out
what works. Canadian Oncology Nursing
Journal, 17(4), 206–211.
Given, B., & Sherwood, R.R. (2005). Nursing
sensitive patient outcomes: A white
paper. Oncology Nursing Forum, 32(4),
1538–1688. doi:10.1188/05.ONF.773-784.
Helgeson, V.S., Cohen, S., Schulz, R.,
& Yasko, J. (2000). Group support
Canadian Oncology Nursing Journal • Volume 27, Issue 1, Winter 2017
Revue canadienne de soins infirmiers en oncologie
change does the organization actually
have control). Once these decisions are
made, instruments or tools can be identified to capture the required data and
the frequency for the data capture can
be determined.
CONCLUDING STATEMENT
This project identified a range of
indicators that could be measured to
profile the performance of the peer support telephone-based service. There are
structure, process, and patient-reported
outcome measures specified. While
some may be captured on a frequent
and routine basis, and embedded within
data capture for the specific call, others
may be more appropriately captured on
a quarterly or annual basis and require
a different method for data collection.
Ultimately, the decision about the variables that are most valuable to measure
ought to be based on the organization’s
desire to know, on a regular basis, the
impact and effect of its service delivery.
interventions for women with breast
cancer. Who Benefits from what? Health
Psychology, 19, 107–114.
Raupach, J.C., & Hiller, J.E. (2002).
Information and support for women
following the primary treatment of breast
cancer. Health Expectations, 5(4), 289–301.
Thorne, S. (2000). Data analysis in qualitative
research. Evidence Based Nursing, 3,
68–70.
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FEATURES/Rubriques
5 were generated through conversations
with the project team. The capacity of a
service to achieve its desired outcomes
is clearly related to the resources it has
available for implementation.
Process indicators relate to the interaction or telephone exchange itself
and what happens between the caller
and the responder (staff/volunteer).
Training of the staff/volunteers needs
to provide the opportunity to develop
skills and capabilities to ensure a sensitive and compassionate interaction with
callers, and an appropriate response to
their needs. Ideally, measurement of the
trainees’ capabilities ought to occur at
the end of their training program and
be monitored regularly once they begin
to respond to calls. Monitoring can
occur in real time through observation
and listening in to the actual calls, as
well as through caller feedback (written
or vocal—survey or interview).
Patient-reported outcome indicators
refer to the end result of the telephone
exchange itself. The indicators in Table