Last lecture from annual conference last spring. Disenfranchised grief.

I thought I would just cut and paste the paper I asked for regarding the last session which I did not report to you until now. This is the research and paper from Aubrey McCann eta.....listed below from Brock University. I thank them for the information which I share with you. I have written to you about grief before as I have attended lectures and from notes I have taken. I have also studied grief in the Pastoral Counselling studies. As I am still providing notes from recent lectures and undergrad psychology notes, I shall eventually get there. I have one more day event to attend about ethics and that should be it for the year. I won't be providing notes for that. I still have a few notes from the last education event about journaling. That shall come. www.redigondapsychotherapy.com Disenfranchised Grief: The Toll of Unacknowledged Loss on Well-Being Aubrey McCann, Jessica Ralph-Emberley, Kathryn Belicki, & Joshua Black Paper presented to the annual meeting of the Canadian Association for Spiritual Care, April, 2018, Huntsvile, ON Note: font in green represents a transition to a new slide. As we look at disenfranchised grief, we need to begin with the fact that humans are quintessentially a social species. There is lots of evidence for this. For example, events are much more likely to be experienced as traumatic and exert a greater toll on us when they involve a disruption of a social bond, which is why betrayal cuts so deeply and is so hard to forgive. And so it follows that bereavement is particularly painful because of that loss of a cherished social connection. Having social connections is such a part of who we are as a species that the loss of someone close can be experienced as part of yourself dying. Consider this quote from one of the participants in our research: It is definitely the most intense grief I have ever experienced...as if a piece of my soul was ripped out. (Miscarriage study, birth mother, age 35) Therefore it is no wonder then that social support is so helpful in times of bereavement. That brings us to the important distinction between grief and mourning. Grief is the inner and private experience of loss—what you feel in your mind, spirit and body. In contrast, mourning is the public expression of grief. Mourning publically allows us to convey our pain to others, thereby inviting them to support us, and therefore can play an important role in helping people to process their grief. But what happens when grief is disenfranchised? What do I mean by disenfranchised grief? This is when the grief we feel is not acknowledged or validated by others. When is grief disenfranchised? When it is not “permitted”—for example, if you love someone that those around you don’t approve of. When it is not understood—I know a woman who had a very abusive husband whom she left. When he died several decades later, she was devastated because she had never stopped loving him. But most people around her didn’t give his death a second thought. She certainly wasn’t plied with condolence cards, let alone visits and casseroles. As a result with disenfranchised grief we don’t get the benefits of mourning—the support that ideally comes with mourning. Therefore, it is not surprising that initial research has found that the more we feel disenfranchised in our grief, the greater the grief intensity. So our research team did two studies aimed at better understanding the effects of disenfranchisement on grief. Our analyses are ongoing but let me share what we have so far. In one study we studied people who had lost a dog or cat in the prior six months, a loss that can be disenfranchised. For example in a talk given by Joshua Black, a person said “ I don't know why people grief over a pet, they can just get another one” The second study was of people who had experienced a miscarriage in the prior year, a loss that can be under estimated by others, and all the moreso if it is early in the term. In both studies the participants were adults, mostly US residents, who were enrolled in an online employment pool managed by Amazon. They were mostly Caucasian (84% in pet loss, 66% in the miscarriage study), and mostly well educated (though we had a range from pre high school through graduate school). We also had multiple warnings about not participating if this was a time when they felt vulnerable, and we had a number of people leave the survey after those warnings. So this was a group that was doing relatively well emotionally. In the pet loss study there were 199 participants (108 men, 91 women, 0 other) of whom 99 had lost a cat and 100 had lost a dog in the prior six months. They ranged in age from 18 to 69 with a mean of 32.5. We thought that grief over a cat would be even more disenfranchised than a dog, but at least in our sample we were wrong--there was no difference in grief intensity or in feeling disenfranchised, so we ended up treating it as one sample. We asked participants about the nature of their relationship with their pet and provided a list of options ranging from the very intimate (e.g. a child) to potentially impersonal (a possession, a status symbol) and instructed them to check off all that applied. Most endorsed something in the relationship end; specifically In the order endorsed this is what participants indicated: Friend 81.5% Companion 77.9% Pet 69.68% One who loves me 66.3% Child 30.2% Guard 11.1% Therapy dog/cat 9.0% Sibling 7.5% Possession 6.0% Caregiver 4.0% Parent 1.0% Status Symbol 1.0% Worker 0.5% Other (“Teacher”) 0.5% Other (“My Mr. kitty face”) 0.5% On a self rating scale of how much they were grieving from 1 (not at all) to 7 (very intensely grieving), 7% indicated not at all or very little while 24.5% indicated intensely or very intensely grieving and the mean was 4.5 (half way between “moderately grieving” to “somewhat intensely grieving”). We asked about public mourning—how frequent and how intense—and found there was a real disconnect between grief and mourning. While only 7% had none or little grief, 63.7% reported no or very little public signs of mourning. So as a group they were feeling more grief than they were showing to the world. So if we know an animal has died, we shouldn’t wait for a public sign that the person is grieving to offer condolences. In the second study, we focused on miscarriage defined as any death before birth and our final sample had 226 individuals including 140 birth mothers (139 women, 1 other) and 86 partners (83 men, 3 women). We thought partners’ grief would be even more disenfranchised, but again there were no differences in disenfranchisement or grief intensity in this sample. They ranged in age from 20 to 50 with a mean age of 31. As with the pet loss study, we saw a disconnect between grief and mourning. 19.6% of birth mothers and 14.3% of partners reported that they were currently experiencing no or little grief. In contrast, 17.4% of birth mother and 21.4% of partners were experiencing intense or very intense grief, but 59.9% of birth mothers and 59.3 % of partners reported no or very little public mourning. So as a group showing much less than they experience. In this study we asked explicitly about support: 28.4% of birth mothers and 19.5% of partners wished they had received more support; 50% and 58.5% said the support received was about right, and just to show that things can be complicated, 21.5% and 22% received more support than they wanted. So again generally well supported. That said, when asked if they had received condolence gifts such as food or flowers, about 50% said they received nothing. This suggests to me that people have lesser expectations about support when they lose a pre-term baby than when another class of family member dies—and this may in turn affect their perception, seeing themselves as more supported than tey actually are. We asked a number questions about their involvement and closeness to the fetus—whether participants had set up a bedroom; whether they had discussed their pregnancy with others or on social media,and a number of questions about whether they had thought about the future of the baby. The questions that were most highly endorsed were questions about the future. Between 2/3’s to ¾’s depending on the question said they had spent quite a bit of time imagining what the baby would look like when they grew up, their personality, what the baby would do in life, etc. So whereas with the pets for many they had lost a source of social support, with the miscarriages people had lost a future. And this reflected in their night dreams, by the way, where they often dreamt about an imagined future—toddler playing in the yard or even the baby as a young adult. So one way into a conversation is to remember that with animals it’s about the relationship they’ve lost so talking about what that animal was or is to the person is a good avenue -and with the miscarriage it’s about the loss of a future. So asking about that future they had imagined is likely a good approach . Here’s another quote: I was just surprised at how attached I got to an unborn child, the thought of what could have been. (Miscarriage study, male partner, age 27) In addition to the kinds of questions I have described, in the pet loss study participants completed several measures Inventory of Traumatic Grief—a measure of complicated extreme and protracted grief Witnessing of Disenfranchised Grief—a measure of disenfranchisement, whether you were supported in your grief. Physical health Continuing Bonds—a range of experiences which have at their core a continuance of the relationship after death Two measures of attachment and closeness to the animal Questionnaire concerning dreams about the deceased In the miscarriage study, they completed Inventory of traumatic grief Witnessing of Disenfranchised Grief Continuing Bonds Questionnaire concerning dreams about the deceased RESULTS When we looked at the correlations among these measures they basically behaved exactly the way they do in studies of conventional grief—for example we have studied grief following spousal or romantic partner death. As in our study of partner loss, we observed moderate correlations between grief and continuing bonds and having worse physical health. Even the mean scores on the traumatic grief measure were quite comparable. This is a measure of extreme intensity grief. It includes items like “Ever since_____________ died I feel like I have lost the ability to care about others.” As a result the means tend to be low. So comparing our three studies we find Pet Loss, M = 2.21, SD = 0.78 Miscarriage M = 2.59, SD = 0.81 Spousal loss M = 2.85 SD = 0.79 Where 2 = “Rarely = once a month or more, less than once a week” and 3 = “Sometimes = once a week or more, less than once a day” In terms of the disenfranchisment measure. We expected less grief in people who had more support, and while that is generally true it is proving to be more complex. In the pet loss study we found that having support was related slightly to less traumatic grief but there was no relation to just grief ratings. Probably the issue here is that a lot of this sample was now doing well. In the miscarriage study a slightly more complicated picture appears—having support was slightly associated with MORE traumatic grief but with lower ratings of grief. Best guess at this point—people whose grief is now in the complicated or traumatic range are more likely to elicit some support, but that aside, control for it statistically, for most people less support means you suffer more. So clearly more research needed and in that vein a participant made an excellent observation—we didn’t ask about detractors. In both studies we also asked for feedback about the study with open ended questions, and this provided an unexpectedly rich set of material. People didn’t just comment on the study, but on their experience. There were some excellent descriptions disenfranchisement: Nobody wanted to touch this. When you're the husband, people REALLY don't know how to approach your grief. They wonder if I was really connected to the baby, was I really invested, can I be in pain over something I never even felt? I just kept to myself and grieved privately with my wife. I didn't want to reach out to anyone because it might make them uncomfortable, both with me being the husband and us being non-religious. Everyone always loves to say god got another angel or some such crap. (Miscarriage, male partner, age 31) I felt like people didn't know how to go about helping me. They were unsure of what to say, because it wasn't quite a still birth, or like a real child that I had held and loved died. People know what to do when your dad dies, or even a child that you've raised for a while. When it's something like this, everyone is almost completely silent. They have no idea what it feels like unless it happens to them. Which I don't blame anyone for. How could they know that it's EXACTLY like that, like losing your dad or a child you've raised? (Miscarriage, birth mother, age 34) Perhaps what was most telling was that the most common response from participants was to thank us for having this study and for giving people the opportunity to share their experience, with several making it clear that this was a rare opportunity. In 45 years of doing research, I have never had so many people thank me. Here’s a particularly eloquent example. Thank you very much for this opportunity. It has been a difficult time for me to cope with this loss, because it is the first time I've experienced a pet loss in my adult life. I find that it's been much more difficult now than when I was a child, as this cat was entirely my responsibility. He was afflicted with bladder cancer, and died young and suddenly. The very quick turnaround from diagnosis to putting him to sleep resulted in a strong sense of disbelief about the event. I'm getting better about accepting it now, but the emotional pain is still prominent. I appreciate this opportunity to give my honest responses about how this has affected me. I think you're doing very important research, and I commend you for that. Thank you very much! (Woman, 31, Cat loss) To them we are strangers, faceless researchers and it was kind of sad that so many found it helpful to pour out their hearts anonymously to us. So it indirectly shows how important is social support even to people who are largely doing quite well. And as this is a conference on spiritual care, we’ll give the last word to a participant who observed something we omitted from the study: What helped me the most is my faith. I think that if you included questions about God, the afterlife, peace and comfort, it might be even more revealing to you. (Woman, 46, Dog loss) In short the same sources of strength we turn to when facing conventional losses are the sources of strength and comfort we need when facing a loss that is not understood. So hopefully we can all be sensitive to the possibility of disenfranchised grief, because often the bereaved will not show it publically, and by being aware be people who help make true… Blessed are those who mourn, for they shall be comforted. Thank you.