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Female Spouses and Their Preparation for the Death of Their Loved One: Preliminary Results of a Grounded Theory Research

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22nd International Congress on Palliative Care, Montreal, 2018

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Female Spouses and Their Preparation for the Death of Their Loved One: Preliminary Results of a Grounded Theory Research

  1. 1. Female Spouses and Their Preparation For the Death of Their Loved One: Preliminary Results of a Grounded Theory Research Emilie Allard RN, M.Sc., Ph.D. (c) Université de Montréal Christine Genest Ph.D. Université de Montréal Alain Legault Ph.D. Université de Montréal
  2. 2. 2 I do not currently have an affiliation (financial or otherwise) with a commercial entity. No Potential Conflict of Interest to Declare
  3. 3. Plan for the presentation • Goal of the study • Methodology • Process of preparation to the death: • Dynamics of the process • Structure of the process • Conclusion • References 3
  4. 4. Goal of the study Propose a model for the process of preparation to the loss of a spouse to cancer, from the perspective of female spouses. 4
  5. 5. Constructivist grounded theory methodology Data collection: • Open interviews • Selection criteria: • Women • 18 years old + • Spouse living with a terminal cancer 5 Data analysis: • Codification and category development • Constant comparison of data • Memoing and diagrams The preliminary results are based on ten (10) interviews (Charmaz, 2014; Corbin & Strauss, 2015)
  6. 6. Life prior to cancer Life after death • Crystalization of the fundamental loss Spouse Prognosis announcement Intensification of symptoms until end-of- life Appearance of symptoms and decrease in functional capacity Diagnosis announcement • Letting go • Confronting the reality of the spouse’s mortality • Threat to the spouse’s life, dampened by the hope of recovery • Tactical preparation • Planning for the future • Lifestyle modifactions • Controlling the end-of- life • Living one day at a time • Thinking about ending up alone • Supporting the spouse’s decisions • Considering the possibility of therapeutic failure Death of the spouse
  7. 7. Overall process structure and dynamic • Flow of process is based on: • Life prior to cancer and life after their spouse’s death • Illness trajectory • Evolution of the process is based on 4 periods experienced during the illness and end-of-life: • Diagnosis announcement • Prognosis announcement • Appearance of symptoms and decrease in functional capacity • Intensification of symptoms until end-of-life 7
  8. 8. Overall process structure and dynamic Spouses respond to each transition with: 1. Strategies that help them adjust to the changes they experience in a given period 2. Mental scenarios that help them plan for the next transition “Ah! Sometimes it pops in my head. You know, from time to time. Sometimes it’s when I’m in the shower… I’m starting to juggle, and hop! I’m in the future” — Kate 8
  9. 9. 1st period : Diagnosis announcement 9 Experience State of shock, denial, stress… and hope « Boom, the diagnosis hits you. Of course our lives were upended, really, like a three-sixty (360), you know? I would say that last summer was really about shock, sadness. » - Kate Meaning Threat to the spouse’s life, dampened by the hope of recovery « Because the surgeon said: « Mr., there’s no need to worry, we’ll take it out [the cancer] ». - Ether Strategies to adjust Supporting the spouse’s decisions « I said « Of course! I’ll be with you through this ». But you know, deep down, I kept thinking that if this was happening to me, I’d think this wasn’t really necessary, it’s almost like trying to extend life at any cost. But he (spouse) doesn’t see it like that; he sees it like an X additional period of time. » - Angie Planned scenarios Considering the possibility of therapeutic failure « And, you know, it’s tough, because it’s always shocking to learn that you have cancer because you never know whether… Is it too late? Has it spread? Will he make it? You know, we never really know. (…) And I really wasn’t expecting that. » - Amy
  10. 10. 2nd period: Prognosis announcement 10 Experience State of shock and loss of hope « With all the results, the blood tests and everything else, well then he says « We’re in palliative » [Shock; short of breath]. He says « Chemo[therapy] is out of the question, you wouldn’t be able to handle it, otherwise, there aren’t a ton of alternatives you know. » That, well that gave me a shock. » - Angie Meaning Confronting the reality of the spouse’s mortality « Today is different. (…) It’s different because you know there’s no going back. That, of course, isn’t easy [crying]. » - Ether Strategies to adjust Living one day at a time « Day-to-day for sure because otherwise you break down; day-to-day, yeah, not like you have much of a choice. » - Branda Planned scenarios Thinking about ending up alone « Sometimes, you know, I imagine myself after [the death]. But that, it’s really too far. Now, I’m like: « Oh God, this is the man of my life. What am I gonna do without him? » - Kate
  11. 11. 3rd period: Appearance of symptoms and decrease in functional capacity 11 Experience Confrontation with the changes tied to the illness’ evolution. Development of the role of caregiver. « So now I’m kinda playing the role of a nurse, I don’t have a choice » (E#10) « So like I was telling you, what I miss most is my friend. He can’t be my friend, (spouse) you know, because, how could I say this [crying], you need a kind of chemistry that we had, and that we don’t have anymore. And that chemistry, the cancer took it away. » - Branda Meaning Crystalization of the fundamental loss of the loving spouse, friend and lover. « It’s because there’s just me that… that understands what’s happening. No one can understand, no one experiences it like me. » - Amy Strategies to adjust Lifestyle modifications « But when it (diagnostic) happened, it’s one of the things I developed a lot – I drove the car a lot more, even if he was there, I was driving. I had to develop that. » - Nikki Planned scenarios Controlling the end of life «You know… When… If… It could happen that he is too weak that we have to—for example, get a hospital bed at home— and that we need to watch over him closely. I will find it hard for sure. (…) but I’ve got a number to call if something is happening» — Angie
  12. 12. 4th period: Intensification of symptoms until end-of-life 12 Experience Final stages of illness progression leading to end of life: hospitalization « It meant it was his last home. So what it meant for me is that it’s sure he’s dying, it’s sure it’s here. And it’s close. It’s sure that it’s soon. » - Nikki Meaning Letting go « That’s just how it is, that’s life – maybe that’s what people need to get into their heads, the process to accept death is the same process we use our entire life. We spend all of our time re- adjusting, adapting, and accepting things we don’t agree with. We end up accepting them anyways and getting through it; it’s the same thing. » - Nikki Strategies to adjust Tactical preparation: prearrangements and souvenirs « But me… for me, it’s important that… I don’t want him to be taken away from and… you know… I want to spend time with him. » - Amy Planned scenarios Return to a vision of self and planning for the future «Sometimes I think about what my life will be after … you know (the death)… For sure I will have to reorganize, but I’m sure I will be alright. And I will start travelling again…» – Angie
  13. 13. Conclusion • Each event of the illness trajectory is also linked to a period of the process of preparation to the death • Professionals working with caregivers should take the time to try to understand what they are living, what meaning they attribute to the experience, how they react to it, and how they view and think about the future • Resources and information could then be personalized for the expressed needs of the caregivers 13
  14. 14. References Charmaz, K. (2006). Constructing grounded theory. A practical guide through qualitative analysis. Thousand Oaks (CA): SAGE. Corbin, J. M., & Strauss, A. (2015). Basics of qualitaive research. Techniques and procedures for developing grounded theory. (4e éd.). Thousand Oaks (CA): SAGE. Lindemann, E. (1944). Symptomatology and management of acute grief. American Journal of Psychiatry, 101, 141-148. Meleis, A. I., Sawyer, L. M., Im, E. O., Hilfinger Messias, D. K., & Schumacher, K. (2000). Experiencing transitions: An emerging middle range theory. Advances in Nursing Science, 23 (1), 12-28. Rando, T. A. (1986). Loss and anticipatory grief. Lexington (MA): Lexington Books. Rando, T. A. (2000). Clinical dimensions of anticipatory mourning: Theory and practice in working with the dying, their loved ones, and their caregivers. Champaign (IL): Research Press. 14
  15. 15. 15 Please Complete the Evaluation Form Thank you! For more information, please contact Emilie Allard: emilie.allard.3@umontreal.ca

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