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ABSTRACT
Interest in measuring patient-reported outcomes has been growing within cancer care facilities. In particular, communi- ty-based agencies want to identify appro- priate patient-reported outcomes to use in evaluating their programs. Willow Breast Cancer Support Canada undertook a series of interviews with staff, peer volun- teers and clients to identify the most rele- vant patient-reported outcomes for their telephone peer support service. Both pro- cess and outcome variables were identified as relevant for future measurement. The approach utilized and the outcomes identi- fied could serve as a model for similar orga- nizations to implement.
C
ancer and its treatment have signif- icant emotional, psychosocial, spir- itual, and practical consequences for individuals (Fitch, Porter, & Page, 2008).Having relevant, meaningful informa- tion and support has been cited by can- cer survivors as critically important in helping them cope with these conse- quences (Fitch, Porter, & Page, 2008).
In particular, peer support is seen as a key source of relevant information and emotional support for breast cancer sur- vivors (Fitch, Nicoll, & Keller-Olaman, 2007; Raupach & Hiller, 2002).
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 pri- mary 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 diagno- sis 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 compassion- ate support.
There is growing interest on the part of cancer care agencies to evalu- ate whether they are delivering services as planned and achieving anticipated patient results. Patient-reported out- comes (PROs), conceptualized as changes in an individual’s health sta- tus 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-re- ported outcomes for its telephone-based peer support service. This unique initia- tive for community-based, staff/volun- teer-delivered support could be a model for other community cancer support services.
BACKGROUND
Willow’s Peer Support Telephone Service
Willow’s peer support telephone ser- vice 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 can- cer 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
calls per month (not including email requests) and the calls last between five and 60 minutes.
During a call, the Willow staff mem- ber 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 per- spective 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 informa- tion a caller requests, they may refer the caller to another individual within the organization (i.e., librarian, another volunteer with a more similar experi- ence 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 volun- teers are expected to understand and assess client concerns from the per- spective of the caller and balance giv- ing 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 met- rics 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 clin- ically are physical indicators (i.e., pain, nausea, fatigue, etc.) although record- ing of psychosocial PROs (i.e., anxi- ety, depression, etc.) is occurring with greater frequency. During the past decade, cancer centres have started using PRO tools to measure and track
Identifying patient-reported outcomes of
telephone-based breast cancer support services
by Margaret I. Fitch, Kittie Pang, and Danielle VandeZande
ABOUT THE AUTHORS
Margaret I. Fitch, RN, PhD, Professor, Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON
Marg.i.fitch@gmail.com Kittie Pang, BSc(Hons), Research Coordinator, Sunnybrook Health Sciences Centre, Toronto, ON Kittie.pang@sunnybrook.ca Danielle VandeZande, Senior Manager, Support Services and Community Engagement, Canadian Breast Cancer Foundation, Toronto, ON
Dvandezande@cbcf.org
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psychosocial and symptom distress with a view to stimulating person-cen- tred 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. Community- based centres may have programs deliv- ered 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 spec- ified objectives for the programs, the expected end result, the resources avail- able, and the mode of delivery. To date, PROs for volunteer/peer-based tele- phone 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, tele- phone-based information and support service related to breast cancer.
METHODS
Using a descriptive qualitative meth- odology (Thorne, 2007), we sought to understand current experiences with the Willow peer support telephone ser- vice 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, volun- teers, 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 mem- bers assisted in the project design and implementation. Their participation included one interview about their experiences responding to the Willow callers.
The executive director of the agency sent an invitation letter to the peer sup- port 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 orga- nized a convenient time to conduct an interview either in person or over the telephone. The staff and volunteer inter- views 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 con- ducted to understand the client’s experi- ences with the service. For those who were interested in learning more about the study, their name and contact infor- mation was recorded with their permis- sion and shared with the research assist- ant. 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.
Interview guide: A semi-structured interview guide was designed by the investigators and Willow staff mem- bers for the purposes of this study. The interviews provided an opportunity for the participants to describe their per- spectives about the telephone service:
how it operates, what happens during a telephone call, and outcomes of the interaction. All interviews were con- ducted by the same individual (research assistant) who had qualitative inter- view experience and was not part of the organizational staff. Each interview was audio recorded and transcribed verbatim.
Analysis: The staff/volunteer interviews were analyzed prior to conducting the client caller interviews. In all cases, the
verbatim transcripts were subjected to a standard qualitative descriptive con- tent analysis (Thorne, 2007) by two indi- viduals (PI and RA) experienced in this type of analysis. Interview transcripts were reviewed independently and mar- ginal notes made about the observed content. Subsequently, perspectives about the content were shared through discussion, similar ideas grouped, and key ideas isolated within the catego- rized content. Final results were sum- marized by the PI. Ultimately, common perspectives across all three groups of interviewees (staff, volunteers, clients) were drawn together to reflect the over- all ideas about the relevant patient out- comes for the telephone-based peer support service.
RESULTS
Perspectives from Staff Members and Volunteers
Six staff members and four volun- teers 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 vol- unteers 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.
Reasons callers contacted Willow
Willow is seen as responding to needs for information and support for
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.
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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 provid- ing trustworthy, credible information either through telephone conversations or via written material sent by mail or electronically. It provides a trained indi- vidual who has been through the same situation and who can “…listen to the whole person”. Conversations are pri- vate 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 identify- ing one type of request as their reason for calling, but the conversation often evolves to include other emotional or information issues. They could be cry- ing 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.
In many instances, as the calls pro- ceed, discussions will incorporate aspects of both support and informa- tion. A call motivated by the need for emotional support will evolve into shar- ing 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 lis- ten to what is being said, the tone of voice… it is easier sometimes if you are with someone one-to-one to rec- ognize 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 possibil- ity 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 val- idates 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 listen- ing carefully, letting the caller identify what they wanted to discuss, and try- ing to respond in a supportive and com- passionate manner. They often recalled their own experience and what they found helpful at the time of their origi- nal diagnosis and try to incorporate this into their calls.
• A lot comes up in the calls about the women feeling a lack of control
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 direc- tion a particular call may take at the onset. They need to be prepared to fol- low 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 back- ground 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, spiri- tual, 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 iso- lation, feeling alone, and joy. Practical topic examples are dealing with finances, navigating the cancer care sys- tem, or finding services (e.g., wigs, pros- theses). Interviewees emphasized that no medical advice is given to callers; cli- ent callers are encouraged to ask medi- cal questions of their family physician, oncologist or cancer nurse. Callers often look for a different type of conversa- tion than the ones they would have with health care professionals.
• …Just simply talking to some- body 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 ques- tions, but I mean, first of all, they
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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 per- haps talk to another woman about it, that’s because it’s something she would understand.Outcomes of calls/interactions
Willow staff/volunteer interview- ees identified a range of both pro- cess 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/volun- teers 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 out- come 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 emo- tionally 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 some- what 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.
• 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 col- lection, 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 inter- viewed were female and 16 had been diagnosed with breast cancer. The one male was a family member. The cli- ent callers ranged in age from 29 to 71 years (average 54.2 years). Of those who had breast cancer, the diagno- sis 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. Fifty- five percent (55%) lived in the Greater Toronto Area, while an additional 45%
lived in other parts of Canada (See Table 3).
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
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Reasons for calling
The callers described their initial rea- son 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 experi- enced the same things or who had gone through the same situation as them- selves. 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 moti- vation to call Willow.
• I was panicking because I was afraid that I had a recurrence, and she [staff member] had a very calm- ing effect on me.
• 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 fam- ily. I did not want to worry them.
• 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 ter- minology, “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 treat- ment, you know, and wanted to know what to expect, their experi- ences, just feeling out the unknown and what to expect.
• I called for both support and infor- mation…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 under- standing…I needed someone to help me sort things out.
Callers emphasized that, although their calls had been made regarding a need for either support or information, the conversations often evolved to incor- porate both needs. Giving support often included the provision of information while the discussion of information fre- quently 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 ram- ifications 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.
Experience with calls (focus and process during calls)
Clients characterized their calls as being answered promptly and not hav- ing to “…wait on hold.” If the first person
to answer was not able to respond to their specific request, another individ- ual was brought onto the call quickly or arrangements were made for some- one to return the call in a short time period. They described their experience during the telephone call as being ‘lis- tened to with compassion and under- standing’. They found the Willow staff/
volunteer answering the call was sup- portive, 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 individu- als who had been diagnosed with breast cancer. They did not feel rushed or pres- sured 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 deci- sion. No one can make the decision for me. But they were supportive in helping me make the decision…
compassionate.
• …they were courteous and respect- ful. And, also, tried to be as objec- tive 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 understand- ing 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.
Table 3: Client demographics (n = 20) 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 post- secondary (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)
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Clients reported Information was provided in relation to what they needed. Clients consistently described the value they felt in talking with some- one 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 interest- ing than just getting fact and infor- mation 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 grate- ful I was able to reach out to some- one 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 con- versation helpful, but added a concern.
Two would rather have had a connec- tion 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 some- one who is more recent in going through the experience… maybe finding someone who is closer in age and also in the timeframe… hav- ing 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 pro- cess, callers described feeling com- fortable, supported, and understood.
The manner of the conversation and the responses from the Willow staff/
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 treat- ments. She knew what I was talking about, and was incredibly open about her sort of recovery, and completely identified with my fears and wor- ries… 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 identi- fied (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 sup- port 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 informa- tion 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 receiv- ing 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.
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
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One individual indicated the out- come 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 avail- able through the agency.
Satisfaction with the telephone exchange
Client callers rated their satisfac- tion 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 understand- ing through talking with someone “…
who had been there”. They felt the per- son who had gone through the same sit- uation shared a common set of feelings and emotions. The individual who was calling hardly had to find the words to
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 under- stood my frustration with the sit- uation… I felt I was really talking with someone that really under- stood 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 answer- ing, I totally trusted her.
Some callers thought it was signifi- cant and reassuring that all the individ- uals who responded to the calls were survivors. That women had survived the disease and treatment was seen as hope- ful and encouraging for the newly diag- nosed individual.
• …When I hear, you know, 20-some- thing 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 experi- ences and feelings or asked their ques- tions, they felt heard and understood by the staff/volunteers. The way the Willow staff/volunteer responded felt support- ive 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 treat- ment, 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 ground- ing.’ Like, not to let your imagi- nation 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…
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
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) Process
interaction indicators
• Responses were sensitive and compassionate, supportive, non-judgmental
• Responses were aligned with caller’s identified concern or question
• 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)
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Some callers described being “…able to talk things through…” and “…
sort things out…” as a most satisfy- ing 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 out- comes achieved by this telephone-based program. Table 5 presents the com- monly identified outcomes observed across all interview transcripts.
However, it was clear that the process indicators are also important. The inter- viewees indicated that the actual inter- action 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 con- versations were handled was a key fac- tor 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 under- taken to identify relevant patient-re- ported outcomes (PROs) unique to a peer support, staff/volunteer-deliv- ered 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 mea- surement of the service.
Firstly, all interviewees saw the ser- vice as existing to provide emotional support and information. However, they perceived the support and informa- tion offered through the service was dif- ferent 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
a healthcare provider and patient. This perspective about peer support and the unique role it plays for individuals has also been expressed in the litera- ture (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 han- dled (i.e., process during the call) to be a key factor in achieving the desired end results. The timeliness of respond- ing, 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 prepara- tion of the staff/volunteers. Any training program for staff and volunteers ought to be designed to ensure capability and skill in responding sensitively, compas- sionately, and without judgment.
Thirdly, the calls need to be respon- sive to the individual client situation.
Each caller can have a different spe- cific reason for calling. The staff/volun- teers 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 indi- cators include: (1) is it valuable for a pro- gram to measure the process aspects on a regular basis and, (2) what are the spe- cific 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 inter- action by survey or interview.
Finally, the outcomes of the tele- phone 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 inter- action covers other topics or issues. The interplay of support and information is a key element of these exchanges.
Clearly emotional distress can be gen- erated through misinformation, misin- terpretation, or lack of information. By the same token, facing a cancer diagno- sis, 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 ser- vice 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 survi- vor responder, having an individual who can truly understand what the caller is going through, and having a compas- sionate and sensitive response, and hav- ing 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 orig- inal 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 ser- vice demand together with the ser- vice resources available to meet that demand. The indicators listed in Table
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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.
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
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.
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 inter- action 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 sensi- tive 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
5 reflect information and support needs being met on a short-term basis (i.e., the need that motivated the call was actu- ally 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 infor- mation 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 understand- ing of a topic area, but never take that action. When an organization embarks on a pathway to measure patient-re- ported outcomes, it is critically import- ant 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 account- able (i.e., how far downstream in the use of information and resulting behaviour
change does the organization actually have control). Once these decisions are made, instruments or tools can be iden- tified 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 sup- port 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 vari- ables 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.