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Mary M. Step
             Ashley M. Sandella
       Department of Family Medicine
Case Western Reserve University, Cleveland, OH
 Cancer recurrence is traumatic 1-3
   Patients learned coping in primary illness 4-6
   Key is finding or maintaining hope


 Definitions of hope:
   Dynamic, multidimensional life force that is vital to
    coping with chronic illness 9-12
   A positive attitude toward future events that is grounded
    in subjectively derived sources of meaning in a person’s
    life 13
 Benefit-finding & hope
   May aid adjustment to chronic disease 16
   Demonstrated across a range of chronic diseases 17-19
 Benefit-finding has been associated with: 21,22
   Optimism 21
   Positive reframing 21
   Religious coping 21
   Posttraumatic growth 22
 Hope and benefit-finding are important to coping
  with illness, however little is known about how these
  resources are experienced by recurrent cancer
  patients 23-25
 This study aimed to explore patients’ perceptions of
  hope and benefits at the time of cancer recurrence
  with an eye toward identifying distinct sources of hope
  and types of benefits
 Drew on data from a prospective study of clinician-
 patient communication during first 6 months of a
 cancer recurrence
   Mixed methods featuring semi-structured
    interviews, patient reported outcomes, and observations
    of visits
   Analyzed segments of patient interviews that were
    focused on hope and benefit-finding
 Oncologists (n = 11) at a comprehensive cancer center
  referred newly recurrent patients (n = 30)

 Eligibility:
   Female
   First distant recurrence of
      breast, colorectal, gynecologic, head and neck, or lung
      cancer
     ECOG status 0-2
     Disease-free at least six months prior to recurrence
     Enrolled within 4 months of recurrence diagnosis
     No symptomatic brain metastases
 Participant demographics:
   Age range:
      42 – 84 years (M = 63.0, SD = 11.5)
   Disease info:
      23 breast
      4 lung
      1 colon
      1 gynecologic
      1 head and neck
   Disease-free time:
     2 – 35 years (M = 7.4, SD = 7.5)
 Digital audio and transcribed recordings of interviews
 Interview duration :
   30 – 76 minutes (M = 48.3, SD = 12.1)
 Interview questions organized around themes of
 communication, support, prognosis talk and coping
   As the iterative interview process progressed, hope and
    benefit-finding were revealed as common themes in the
    narratives
 Audio and transcripts were imported into QSR NVivo
  8 coding software
 Included demographic and disease characteristics
   Age
   Tumor type
   Months of neutral time
   Oncologist continuity
 Analysis procedures:
   Following thorough grounding in hope
      literature, authors reviewed several cases together to
      form consensus of construct definition/features
     Identified transcript sections relating to having or
      maintaining hope
     Identified expressed positive benefits
     Independent inter-rater agreement (ϰ = >.80)
     Authors used crystallization/immersion method to
      identify potentially thematic constructs
 Identified objects of hope:
    Hope for more time
       Image of future
          “Yes. That is more, because what she’s (doctor) given me is a little bit of hope
           that maybe in a year I’ll be here for my nephew, and that helps.”
       Doctor’s commitment to maximizing time
          “So you know I feel like she truly is in my corner and that whether I’m an
           experiment or whatever I happen to be, that she’s going to read and find
           whatever she can to help me make it through every day that I can.”
    Hope for cure
       Miraculous cure
         “…but you know I also look at I have people praying for me all over the
          country, and I have people saying to me, ‘You are going to be the miracle
          person,’ and you know it’s hard to think that about yourself, but given my
          faith I do believe in miracles, so I’ll take it.”
       Medical cure
         “Yeah it gives me hope, and especially when she (doctor) said that ‘We’re
          going to find out what this is and we’re going to take care of it.’”
 Doctor as object of hope
    MD is gatekeeper of expressed optimism
      “He (doctor) talks very confident. I mean you know he doesn’t
       make it sound like, ‘You’re going to be dead in 10 months,’ or you
       know what I mean. He’s confidence.”
    Information-giving
      “He’s (doctor) also concrete about exactly what’s happening
       medically, biologically.”
 Patients identified having a lack of hope:
   Lack of future
      “My outlook ain’t so good right now.”
   Cancer is equated with death
      “Cause you know at that point you’re not having hope. All you hear
       is cancer and still cancer is a stigma, you’re going to die.”
      “…the rug was pulled out from under me, you know. When I went
       home, I felt like I was going home to get ready to die.”
   Perceptions of absence
      “I mean of course nobody wants to die. I don’t want to die, but my
       biggest thing is my grandchildren. I just, that tears me up, because
       my oldest one, he’s 11 years old and he’s just one of these
       quiet, sensitive kids, and he and I are very close and I just would be
       scared to death of what would happen to him. I don’t think he could
       handle it, and that scares me, so…”
 Identified benefits
   Gratitude
      “So I can remember when she (doctor) gave me all of that
       time when I first met her, and one day she was late coming in
       and she said, ‘I’m sorry. You know I had a problem,’ and I
       said, ‘You know, you take all the time you need, because
       when I needed it, you gave it to me.’”
   Avoiding consequences
      “…and so I felt that you were really in a sense, I was blessed
       you didn’t have to suffer that.” (Patient’s daughter)
 Existential benefits
    “You increase your faith again, I suppose, which shouldn’t be
     the way it should be, but you know you do.”
 Authentic friends
    “You learn who really, really cares about you, who comes and
     calls and says prayers and you know things like that. You
     learn you know that there’s a lot of people that care about
     you.”
 Increased ‘other’ orientation
    “I decided after doing quite a bit of reading the first go-round
     that if I want people to be open and be there for me, I have to
     be open to them.”
 Patients’ hope in the early months of cancer recurrence is
  deeply tied to a survival time horizon
   This conclusion stems from both the objects of hope and
    perceptions on lack of hope described by patients
   Goal is as much survival time as possible
   Cure offers time, whether by science or by more supernatural
    means
       Patients consider time from a quantitative rather than qualitative
        perspective
       Idea of retaining hope without cure isn’t evident
 Patients’ buffer the scientific reality of their prognosis with
  the physician’s expressed optimism
   Verbally
   Nonverbally
 Benefit-finding appears to facilitate a shift in focus
  from treatment to other interpersonal or existential
  sources of hope and comfort
 Future interventions for recurrent patients may best
  focus on helping patients generate personal benefits in
  order to focus more fully on quality of life
 Limitations
   Small sample size
   Self-reported patient outcomes
   1. Worden JW. The experience of recurrent cancer. CA: Cancer Journal for Clinicians 1989;39(5):305-16.
   2. Weisman AD, Worden JW. The emotional impact of recurrent cancer. Journal of Psychosocial Oncology
    1986;3(4):5-16.
   3. Cella DF, Mahon SM, Donovan MI. Cancer recurrence as a traumatic event. Behavioral Medicine
    1990;16(1):15-22.
   4. Step MM, & Ray, EB. Patient perceptions of oncologist-patient communication about prognosis: Changes
    from initial diagnosis to cancer recurrence. Health Communication 2011:1-11.
   5. Yang H-C, Thornton LM, Shapiro CL, Andersen BL. Surviving recurrence: psychological and quality-of-life
    recovery. Cancer 2008;112(5):1178-87.
   6. Sarenmalm EK, Thoren-Jonsonn A, Gaston-Johansson F, Ohlen J. Making sense of living under the shadow
    of death: Adjusting to a recurrent breast cancer illness. Qualitative Health Research 2009;19(8):1116-30.
   7. Vivar CG, Whyte DA, McQueen A. 'Again': the impact of recurrence on survivors of cancer and family
    members. Journal Of Clinical Nursing 2010;19(13-14):2048-56.
   8. Vivar CG, Canga N, Canga AD, Arantzamendi M. The psychosocial impact of recurrence on cancer
    survivors and family members: a narrative review. J Adv Nurs 2009;65(4):724-36.
   9. Eliott JA, Olver IN. Hope, Life, and Death: A Qualitative Analysis of Dying Cancer Patients' Talk About
    Hope. Death Studies 2009;33(7):609-38.
   10. Duggleby W, Wright K. Transforming hope: how elderly palliative patients live with hope. The Canadian
    Journal Of Nursing Research = Revue Canadienne De Recherche En Sciences Infirmières 2005;37(2):70-84.
   11. Benzein E, Norberg A, Saveman BI. The meaning of the lived experience of hope in patients with cancer in
    palliative home care. Palliative Medicine 2001;15(2):117-26.
   12. Dufault K, Martocchio BC. Symposium on compassionate care and the dying experience. Hope: its spheres
    and dimensions. The Nursing Clinics Of North America 1985;20(2):379-91.
   13. Klenow DJ. Emotion and life threatening illness: A typology of hope sources. Omega: Journal of Death &
    Dying 1991;24(1):49.
   14. Salander P, Bergenheim, T., & Henriksson, R. The creation of protection and hope in patients with malignant brain
    tumours. Social Science & Medicine 1996;42:985-96.
   15. Eliott J, Olver I. The discursive properties of "hope": a qualitative analysis of cancer patients' speech. Qualitative
    Health Research 2002;12(2):173-93.
   16. Sharpe L, Curran L. Understanding the process of adjustment to illness. Social Science & Medicine 2006;62(5):1153-
    66.
   17. Pakenham KI, Cox S. The dimensional structure of benefit finding in multiple sclerosis and relations with positive
    and negative adjustment: A longitudinal study. Psychology & Health 2009;24(4):373-93.
   18. Katz RC, Flasher L, Cacciapaglia H, Nelson S. The Psychosocial Impact of Cancer and Lupus: A Cross Validation
    Study That Extends the Generality of “Benefit-Finding” in Patients with Chronic Disease. Journal of Behavioral
    Medicine 2001;24(6):561-71.
   19. Mohr D, Dick, L., Russo, D., Pinn, J., Boudewyn, A., Likosky, W., & Goodkin, D. The psychosocial impact of multiple
    sclerosis: Exploring the patient's perspective. Health Psychology 1999;18:376-82.
   20. Luszczynska A, Mohamed N, Schwarzer R. Self-efficacy and social support predict benefit finding 12 months after
    cancer surgery: The mediating role of coping strategies. Psychology, Health & Medicine 2005;10(4):365-75.
   21. Lechner SC, Antoni MH, Carver CS, Weaver KE, Phillips KM. Curvilinear Associations Between Benefit Finding and
    Psychosocial Adjustment to Breast Cancer. Journal of Consulting & Clinical Psychology 2006;74(5):828-40.
   22. Mols F, Vingerhoets AJJM, Coebergh JWW, Van de Poll-Franse LV. Well-being, posttraumatic growth and benefit
    finding in long-term breast cancer survivors. Psychology & Health 2009;24(5):583-95.
   23. Munkres A, Obsert MT, Hughes SH. Appraisal of illness, symptom distress, self-care burden, and mood states in
    patients receiving chemotherapy for initial and recurrent cancer. Oncology Nursing Forum 1992;19:1201-09.
   24. Parker PA, Baile W, F., De Moor C, Cohen L. Psychosocial and demographic predictors of quality of life in a large
    sample of cancer patients. Psycho-Oncology 2003;12:183-93.
   25. Schulz R, Williamson GM, Knapp JE, Bookwala J, Lave J, Fello M. The psychological, social, and economic impact of
    illness among patients with recurrent cancer. Journal of Psychosocial Oncology 1995;13(3):21-45.
   26. Snyder CR, editor. Coping: The psychology of what works. New York, NY: Oxford University Press, Inc., 1999.

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Women’s Objects of Hope and Benefit Finding at Cancer Recurrence

  • 1. Mary M. Step Ashley M. Sandella Department of Family Medicine Case Western Reserve University, Cleveland, OH
  • 2.  Cancer recurrence is traumatic 1-3  Patients learned coping in primary illness 4-6  Key is finding or maintaining hope  Definitions of hope:  Dynamic, multidimensional life force that is vital to coping with chronic illness 9-12  A positive attitude toward future events that is grounded in subjectively derived sources of meaning in a person’s life 13
  • 3.  Benefit-finding & hope  May aid adjustment to chronic disease 16  Demonstrated across a range of chronic diseases 17-19  Benefit-finding has been associated with: 21,22  Optimism 21  Positive reframing 21  Religious coping 21  Posttraumatic growth 22
  • 4.  Hope and benefit-finding are important to coping with illness, however little is known about how these resources are experienced by recurrent cancer patients 23-25  This study aimed to explore patients’ perceptions of hope and benefits at the time of cancer recurrence with an eye toward identifying distinct sources of hope and types of benefits
  • 5.  Drew on data from a prospective study of clinician- patient communication during first 6 months of a cancer recurrence  Mixed methods featuring semi-structured interviews, patient reported outcomes, and observations of visits  Analyzed segments of patient interviews that were focused on hope and benefit-finding
  • 6.  Oncologists (n = 11) at a comprehensive cancer center referred newly recurrent patients (n = 30)  Eligibility:  Female  First distant recurrence of breast, colorectal, gynecologic, head and neck, or lung cancer  ECOG status 0-2  Disease-free at least six months prior to recurrence  Enrolled within 4 months of recurrence diagnosis  No symptomatic brain metastases
  • 7.  Participant demographics:  Age range:  42 – 84 years (M = 63.0, SD = 11.5)  Disease info:  23 breast  4 lung  1 colon  1 gynecologic  1 head and neck  Disease-free time:  2 – 35 years (M = 7.4, SD = 7.5)
  • 8.  Digital audio and transcribed recordings of interviews  Interview duration :  30 – 76 minutes (M = 48.3, SD = 12.1)  Interview questions organized around themes of communication, support, prognosis talk and coping  As the iterative interview process progressed, hope and benefit-finding were revealed as common themes in the narratives
  • 9.  Audio and transcripts were imported into QSR NVivo 8 coding software  Included demographic and disease characteristics  Age  Tumor type  Months of neutral time  Oncologist continuity
  • 10.  Analysis procedures:  Following thorough grounding in hope literature, authors reviewed several cases together to form consensus of construct definition/features  Identified transcript sections relating to having or maintaining hope  Identified expressed positive benefits  Independent inter-rater agreement (ϰ = >.80)  Authors used crystallization/immersion method to identify potentially thematic constructs
  • 11.  Identified objects of hope:  Hope for more time  Image of future  “Yes. That is more, because what she’s (doctor) given me is a little bit of hope that maybe in a year I’ll be here for my nephew, and that helps.”  Doctor’s commitment to maximizing time  “So you know I feel like she truly is in my corner and that whether I’m an experiment or whatever I happen to be, that she’s going to read and find whatever she can to help me make it through every day that I can.”  Hope for cure  Miraculous cure  “…but you know I also look at I have people praying for me all over the country, and I have people saying to me, ‘You are going to be the miracle person,’ and you know it’s hard to think that about yourself, but given my faith I do believe in miracles, so I’ll take it.”  Medical cure  “Yeah it gives me hope, and especially when she (doctor) said that ‘We’re going to find out what this is and we’re going to take care of it.’”
  • 12.  Doctor as object of hope  MD is gatekeeper of expressed optimism  “He (doctor) talks very confident. I mean you know he doesn’t make it sound like, ‘You’re going to be dead in 10 months,’ or you know what I mean. He’s confidence.”  Information-giving  “He’s (doctor) also concrete about exactly what’s happening medically, biologically.”
  • 13.  Patients identified having a lack of hope:  Lack of future  “My outlook ain’t so good right now.”  Cancer is equated with death  “Cause you know at that point you’re not having hope. All you hear is cancer and still cancer is a stigma, you’re going to die.”  “…the rug was pulled out from under me, you know. When I went home, I felt like I was going home to get ready to die.”  Perceptions of absence  “I mean of course nobody wants to die. I don’t want to die, but my biggest thing is my grandchildren. I just, that tears me up, because my oldest one, he’s 11 years old and he’s just one of these quiet, sensitive kids, and he and I are very close and I just would be scared to death of what would happen to him. I don’t think he could handle it, and that scares me, so…”
  • 14.  Identified benefits  Gratitude  “So I can remember when she (doctor) gave me all of that time when I first met her, and one day she was late coming in and she said, ‘I’m sorry. You know I had a problem,’ and I said, ‘You know, you take all the time you need, because when I needed it, you gave it to me.’”  Avoiding consequences  “…and so I felt that you were really in a sense, I was blessed you didn’t have to suffer that.” (Patient’s daughter)
  • 15.  Existential benefits  “You increase your faith again, I suppose, which shouldn’t be the way it should be, but you know you do.”  Authentic friends  “You learn who really, really cares about you, who comes and calls and says prayers and you know things like that. You learn you know that there’s a lot of people that care about you.”  Increased ‘other’ orientation  “I decided after doing quite a bit of reading the first go-round that if I want people to be open and be there for me, I have to be open to them.”
  • 16.  Patients’ hope in the early months of cancer recurrence is deeply tied to a survival time horizon  This conclusion stems from both the objects of hope and perceptions on lack of hope described by patients  Goal is as much survival time as possible  Cure offers time, whether by science or by more supernatural means  Patients consider time from a quantitative rather than qualitative perspective  Idea of retaining hope without cure isn’t evident  Patients’ buffer the scientific reality of their prognosis with the physician’s expressed optimism  Verbally  Nonverbally
  • 17.  Benefit-finding appears to facilitate a shift in focus from treatment to other interpersonal or existential sources of hope and comfort  Future interventions for recurrent patients may best focus on helping patients generate personal benefits in order to focus more fully on quality of life  Limitations  Small sample size  Self-reported patient outcomes
  • 18. 1. Worden JW. The experience of recurrent cancer. CA: Cancer Journal for Clinicians 1989;39(5):305-16.  2. Weisman AD, Worden JW. The emotional impact of recurrent cancer. Journal of Psychosocial Oncology 1986;3(4):5-16.  3. Cella DF, Mahon SM, Donovan MI. Cancer recurrence as a traumatic event. Behavioral Medicine 1990;16(1):15-22.  4. Step MM, & Ray, EB. Patient perceptions of oncologist-patient communication about prognosis: Changes from initial diagnosis to cancer recurrence. Health Communication 2011:1-11.  5. Yang H-C, Thornton LM, Shapiro CL, Andersen BL. Surviving recurrence: psychological and quality-of-life recovery. Cancer 2008;112(5):1178-87.  6. Sarenmalm EK, Thoren-Jonsonn A, Gaston-Johansson F, Ohlen J. Making sense of living under the shadow of death: Adjusting to a recurrent breast cancer illness. Qualitative Health Research 2009;19(8):1116-30.  7. Vivar CG, Whyte DA, McQueen A. 'Again': the impact of recurrence on survivors of cancer and family members. Journal Of Clinical Nursing 2010;19(13-14):2048-56.  8. Vivar CG, Canga N, Canga AD, Arantzamendi M. The psychosocial impact of recurrence on cancer survivors and family members: a narrative review. J Adv Nurs 2009;65(4):724-36.  9. Eliott JA, Olver IN. Hope, Life, and Death: A Qualitative Analysis of Dying Cancer Patients' Talk About Hope. Death Studies 2009;33(7):609-38.  10. Duggleby W, Wright K. Transforming hope: how elderly palliative patients live with hope. The Canadian Journal Of Nursing Research = Revue Canadienne De Recherche En Sciences Infirmières 2005;37(2):70-84.  11. Benzein E, Norberg A, Saveman BI. The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine 2001;15(2):117-26.  12. Dufault K, Martocchio BC. Symposium on compassionate care and the dying experience. Hope: its spheres and dimensions. The Nursing Clinics Of North America 1985;20(2):379-91.  13. Klenow DJ. Emotion and life threatening illness: A typology of hope sources. Omega: Journal of Death & Dying 1991;24(1):49.
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