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Center to Advance Palliative Care: If you’re a healthcare professional or a patient CAPC is a knowledge rich site to access essential palliative care tools, education, and more http://www.capc.org/

Daring Fireball: John Gruber speaks to technology and truth, with great writing. He’s one dude who can throw a sentence down http://daringfireball.net/

Swiss-Miss: Sometimes you just need to take a moment to look at good design or ideas to know all is not lost http://www.swiss-miss.com/

Occupy Healthcare: My other love and passion is working to improve healthcare in America for both patients and healthcare professionals. Occupy Healthcare is a resource for all of us http://occupyhealthcare.net/

 

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Monday
Nov112013

Caregiving, Loss, Grief, and Recovery: A Journey 

"The sun comes up even when the curtains are closed."

Brandy Clark

Donna, my wife of 28 years, died two plus years ago. I have written about caregiving, HPM, loss, grief, a film project and more. What I haven't written about is adaption, recovery, and growth. How and why is it possible to traverse caregiving, loss, and grief to find meaning? Can we find a new better and improved self? Is there something more post trauma? What does the science say?

Within us and prior to a trauma are schemas that dictate self-discovery. It supports our being who we are and our growth. Those schemas were severed when Donna was diagnosed with Stage IV NSCLC.

This is no self-help DIY answer to horrific loss and sadness. There are reams of literature on the topic of grief and loss most of which will guide you better. This is simply a look back though a different set of eyes to identify the elements and process of loss, grief, and recovery. And those out there that have been my discovery partners you know what you've done and what it means to me. Thank you!

A Narrative of Sorts

On August 7, 2011 Donna died in hospice. Her life during her illness has been documented here. On that day I began phone calls to friends and family sharing Donna's passing. A dear and respected friend and his wife were called. Ron said the following that set my grieving in motion and characterized my caregiving. "Do not run from the emotions and feelings. Face them full on so they can be understood and managed. If not you will never heal."

This struck me because it felt true and spoke to me personally. I also knew that during the time I was caring for Donna I cared for her full throttle, perhaps at times a bit too aggressively.

In the middle of year two Donna and I were arguing at a restaurant over her getting whole brain radiation (WBR). For her WBR was intractable alopecia and the radiation oncologist lied. That broke her heart and spirit. For me I drank the evidence kool-aid WBR means survival. We were getting more and more heated. I behaved as the spouse who wants survival at all costs. Donna behaved as one who values QoL. I started to use my words, the four letter ones. A woman and her 10 year-old son were sitting at the next table and she told me to watch my mouth. I told her she is in NYC and her kid goes to school here so he knows these words. I felt guilty for all of 30 seconds.

After her passing I did not shy from the same aggressive driven behavior, only this time it was for me without care or giving just grief and pain.

At the time of Donna's diagnosis and for nearly a year and a half and again following her death I was seeing an amazing counselor at CancerCare (A wonderful and brilliant organization to help patients, caregivers, family etc.) She was an angel and allowed me to be me. In fact she identified that my grieving began at Donna's diagnosis because there would be no happy ending. CancerCare and this person gave me the platform and place to test drive and feel my emotions. I began to structure my sense of loss well before Donna's death.

My friends and family allowed me to be me as well. Each one of them stepped up embraced and comforted me. I discovered a rich, robust, and embracing set of friends on line though Twitter, G+, and a blog. Groups like #hpm #dwdchat, #eol, #hcsm, etc. gave me a reference point for sharing.

During this immediate post loss period I failed to discover what I lost. Obviously it was Donna. But today I see there were other parts of her that I lost which were directly connected to me and in some regard pre-dated our marriage. I kept plugging on. I kept the traditions of cooking a large Sunday meal, trying my hardest to make sure the linens on the bed matched the shams and duvet, and not to forget to groom the dog. There were missing parts. None of this was working well.

It wasn't until a friend opened my eyes saying she cooks as a hobby to get through the weekend etc. I realized that I was cooking for Donna and not for me. A small but significant insight, you grieve for someone yet live for yourself. And don't forget to grieve for yourself. Within the trauma of loss resides our loss. I like to think of it as learning vs. discovery. You can learn something (I suffer incontrovertible grief) but never discover its meaning (truly understand what was lost). Loss and grief can be an opportunity for discovery. Discovery about what was lost and not one directional but a full 360 understanding.  That occurs only when our receptors are open. Trauma can drive cognitive processing if we allow it or are allowed do so in a safe place because it will yield affective engagement.

I was making progress and adapting to the loss. Yet there remained a sense of emptiness. I was hitting the grief hard, doing what was needed. It was a year post Donna's passing that I had a bike accident and developed a subdural hematoma. Those are slow bleeders that took a month and friends and neighbors to be discovered, almost too late. Emergency surgery, a month in rehab, family and friends caring for Nina and me. My grief for losing Donna was replaced by a grief for my being limited to a wheelchair and having to do PT and speech therapy. But again it was all about working my butt off not wanting any more institutional food, getting the hell out and on my own. After a month I went to my sisters. For the first few days I was afraid to cross the street. But one foot in front of the other I was going to get back to normal. Hell with traffic. The neurologist and neurosurgeon said I have fully recovered. 

Once back home and recovered I went to a local rehab facility to do some PT and since the area of speech was affected I wanted to be tested for that. Speech was fine and PT was fine. I set up my bike as stationary and got back to burning calories. An old and wise friend told me that neuropsychology might offer some insight. Now this friend was one of the smartest, kindest, and most amazing (think Mensch) people I know. If he did it I can.

So the long and short of it, off I went to be evaluated. Results were unremarkable. There were some areas that were low normal, I heard mediocre and to tell the truth I was furious, do I hate mediocre. But going back to Ron's comment about not hiding or avoiding the hard emotional work of grieving. Knowing that right now I was grieving for me as well as Donna there was only one path to take. I was going to learn what this neuropsych had to teach me. This was going to be Vulcan mind meld. I would not be daunted from discovering/learning all I could. An old friend said the only thing that changes our consciousness is learning. Little did I know how true that was because what I achieved at Cancer Care and subsequently WITH the neuropsych changed my consciousness.

Nine months later after working with someone who has the patience and understanding of a saint and the brains of Stephen Hawkins I understood the person I became after my loss and TBI was not me. I learned that grief and trauma alter our self-perception in ways both subtle and dramatic. It changes who we are. We can either become that which the loss, grief, and trauma created or we can pad in our bare feet down the darkened hall and find who we were and integrate what we've learned post trauma to discover something new. This is not a story of how I ran a marathon or climbed K2. It’s simply not wanting to vomit thinking about my loss, and trying to learn from life, friendships, and discovery.

That is the narrative. For about 30 seconds I harbored the magical unicorn rainbow sense that all this self-discovery sprang like an artisan well de novo. Then I was introduced to PTG and embraced the idea my de novo self-discovery can be anchored in science and evidence. Finally, in the harsh light of day it seems PTG was integrated into my life by the social and neuro science professionals like an inexpensive folding chair thrown into the trunk of a car and driven to the beach. No matter which of these are valid the elements and process works, we just have to look and listen to our hearts beating and our synapses firing

Post-Traumatic Growth

A Pubmed search for "Post-Traumatic Growth" found 113 articles. The same search in Google Scholar found 4,060 links and a regular old Google Search "Post-Traumatic Growth" found 45,200 links.  PTG exists but may be limited to scholars, researchers, and scientist.

Many have characterized PTG by "what doesn't kill us makes us stronger". How true. The science sees it this way:  PTG is a positive psychological change, which occurs following a traumatic life experience, and those negative experiences drive people to reexamine their world and life. (30 -70 % of survivors say they’ve experienced positive changes Linley & Joseph 2004) Put another way, we fall into poop and come up smelling like a rose.

In 1984 I was working on Adriamycin an antineoplastic agent. At an advisory panel with global key opinion leaders one of the oncologist said that many of his patients when given the diagnosis of cancer make significant changes in their lives. The majority of others present agreed. PTG is not new. What’s new is, it now has a name and an important place in psychology.

Though the idea of growth emanating from the cauldron of hell is old, like Plato old. It is now becoming an important concept within psychological research and the positive psychology movement, which works to improve/build mental functioning as opposed to working toward repairing mental health pathology.

Following a traumatic event people have self-identified the following:

  • Relationships are enhanced and improved
  • Their self-assessment and views change
  • They have changed their life philosophy

Tedeschi & Calhoun, 1996 "The Posttraumatic Growth Inventory: Measuring the positive legacy of trauma" introduced post-traumatic growth along with a tool to measure PTG called Post Traumatic Growth Inventory it is considered the start of PTG. PTGI identifies five factors:

  • Relating to others
  • New possibilities
  • Personal strength
  • Spiritual change
  • Appreciation for life

Clinical psychology works to moderate or eliminate negative emotional states. Positive psychology is focused on activating positive emotional states. Do we feel better about what we are doing and thinking? PTG is about gaining more autonomy, environmental mastery, positive relations with others, openness to personal growth, purpose in life, and self-acceptance. And the research at this point is examining the association between actual and perceived growth. Post-traumatic growth does occur and what I will share below are reviews of the literature that examine PTG and its elements.

The single best paper on this topic is from 2006 Zoellner and Maercker "Posttraumatic growth in clinical psychology- A critical review and introduction of a two component model". It is exceptionally well-written and accessible to most of lay people and for the scientists reading this, an excellent critical review. I would advise reading this paper for a complete understanding of the topic. I want to highlight what the authors found when they examined the empirical investigations on cognitive factors and processes that may help predict PTG.

Openness to new experience: These are people identified as imaginative, emotionally responsive, and intellectually curious. They "draw strength from adversity". It correlates with new possibilities and personal strength.

Hardiness and sense of coherence: These individuals have three sets of cognitions: commitment, challenge, and control. Commitment is our curiosity about making sense of the meaningfulness of the world. Challenge is our expectation that change is what life is all about. Control is our belief that we can influence course of events. Think how I identified myself as driven to provide caregiving and learn and my control of that. Zoellner and Maercker noted that the data for hardiness was associated more closely among POWs or those with higher levels of PTSD.

Dispositional optimism: Seems pretty clear Pollyanna works. The authors note that those self-identified as optimistic are more problem focused. They reframe and accept those uncontrollable situations. They also note that the evidence points out optimism and personal growth seem related and second, optimism and PTG may not have as strong a relationship.

Internal locus of control: This is where individuals employ personal resources to drive successful coping. Said another way if you perceive personal growth and the perception of controllability of the event then it is real. Perception is reality. But they go on to note the data here points to ‘an illusory side in PTG'.

Positive re-appraisal: Following a trauma how do we review and assess the event as in work our butts off (love the word Zollner & Macrcker use here effortful) processing beneficial information. This is a coping strategy and as such leads to PTG.

Acceptance coping: This is one of the more important factors that can lead to personal growth. "PTG was highest for those who used adaptive coping strategies including positive reinterpretation, the use of humor, and acceptance coping." It was noted that this was associated with a highly stressful event.

Sense making and the quest for meaning: Trying to find meaning is central to psychological adaptation and associated with the perception of PTG. The authors note "The quest for meaning seems to be involved in PTG, but PTG is not necessarily linked to having found meaning."

Rumination: Taking a long hard look at what happened and what you feel. It is important that rumination can be adaptive or maladaptive. Someone who lost their husband at about the same time I lost Donna tells me she cannot get him out of her thoughts and how lost her life is to the point of crying for hours on end. The evidence here supports cognitive processing as helpful.

 "The data presented here suggest, from a theoretical point of view, that interventions aimed at increasing optimism, social support, and specific coping strategies may promote positive changes in the aftermath of trauma." Zoellner & Maercker

In 2009 Prati & Pietrantoni published "Optimism, Social Support, and Coping Strategies As Factors Contributing Posttraumatic Growth: Meta-Analysis. They examined 103 studies and identified coping strategies that were contributors to post-traumatic growth. I recommend this study as well for its easy access and clear analysis. I will highlight what the authors found in the 103 studies they examined. 

The following are the strategies that the authors identified:

  • Optimism
  • Social Support
  • Spirituality, 
  • Acceptance coping
  • Reappraisal coping
  • Religious coping
  • Seeking support coping

In summary "positive reappraisal and religious coping are more related to postrumatic growth than optimism and social support". Social support did not have as great an effect though it helps in framing the trauma and allows the individual find perspectives that can be used during reappraisal. 

Optimism was moderately related to PTG and supports what (Zoellner & Maercker, 2006) contend that they are overlapping concepts. They further noted that optimism promotes PTG because it effects threat appraisal and adaptive coping strategies. Tedeschi & Calhoun 2004 note that optimists' ability to focus on what is needed and avoid that which is unnecessary and unachievable based on the reality of the trauma (Donna is not coming back) is crucial for cognitive processing in PTG, 

Seeking social support (friends, family, support groups, online, etc.) had a moderate effect on PTG. It may be as (Tedeschi & Calhoun 2004) noted that individuals may not be all that cool with disclosing their emotions and perspective on the trauma and the reactions other may have. Though a longitudinal study found that a great predictor of of PTG was emotional expression. Talk about it, write about it, share it, Reasons are that the negative feelings are turned down with a sense of closeness in relationships, and a sense of personal strength. 

Spirituality was moderately predictive with positive changes following trauma. It is surmised that spirituality might drive PTG because of the community or community support in addition to the meaning-making and transformational coping. Other authors identified the benefit of spirituality including health, variables, psychological variables, and social variables. 

Religious coping was a strong predictor of PTG. Though it shares similar explanations as spirituality, which maybe attributed to the use of religious resources. It has a strong framework to gain a feeling of control over the trauma, comfort, intimacy with others in the religious community and helping people make changes during this difficult time. The analysis of the literature noted that religious coping strategies are not equally adaptive. 

Positive reappraisal coping was strongly related to growth. Though there are other studies that small or no significant relation between the two. This may just be as described, self-fulfilling prophecy and bingo positive changes. 

Acceptance coping was small but significant predictor of PTG. If we can accept what cannot change specific to the trauma it is a good predictor of growth. But the authors note that the n was small. 

In 2012 Joseph, Murphy, and Regel published "An Affective-Cognitive Processing model of Post-Traumatic Growth". This paper examined a general overview of the field, reviewed the evidence, addressed a curvilinear relationship between PTSD and PTG, shared a new affective-cognitive processing model of PTG, and identified ways therapists can facilitate PTG. This is another excellent paper worth the read. I am going look at the intersections of intervention for the professional. There is an extended section on a post-traumatic affective-cognitive processing model. That discussion is well beyond this post or my current knowledge to allow me to simply share its key points. 

Joseph, Murphy, Regel identify the fact post traumatic stress may indicate a working through the issue and is the engine of PTG. There is a lengthy discussion of this relationship between PTSD and PTG. They present it as a curvilinear relationship. Greater post-traumatic stress was associated with greater PTG but only to a point and then it declines. 

The section on clinical practice is important. Key for the therapist is to support "the continuous cycle of processing”. Read that to say work the pain and emotions. 

Joseph, Murphy, and Regel list the following:

  • Help the client identify and obtain other forms of support outside the therapy sessions
  • Promote reappraisal of the trauma including activities that provide for confrontation of the trauma related information in a safe environment.
  • Facilitating reappraisal
  • Promote helpful coping strategies, hopefulness, and finding socials support
  • Reduce negative emotional states and promote positive emotional states

I found a Masters Thesis completed in 2013 by Michal Keidar Conceptualization of Post Traumatic Growth in the Work of Expert Trauma Therapists. This is another good review of PTG well worth the read. He notes the following, which is important in relation to the recommendations for clinical practice that Joseph, Murphy and Regel make. 

Eight trauma expert therapists active in the Seattle area were recruited and interviewed. The interviews, using sensitization by an interview guide, were coded using grounded theory and finding summarized in nine themes. Interviewees were not familiar with PTG as a term, but recognized it as an important concept in their work, a phenomenon that enables survivors to thrive in spite of their trauma. 

This circles back to the beginning. The outcomes from trauma and loss are seen and known but the science of PTG and its ability to be added to care for survivors is coming into its own though it is not fully understood or applied. Perhaps the PTG movement and new data being published will help standardize its application to the care for those who have suffered trauma and aid the professionals treating those same individuals. Additionally patients family members of those who have suffered trauma should learn about consider PTG. It is my opinion that those who have suffered loss/trauma may benefit from at least a recognition that PTG exists and consider how they may engage in the process with their HCP. 

My Narrative and the Evidence

Let me see if I can match my journey to the evidence. This is my perception and observational. As such it is of less interest to the social and neuroscientists. Yet it is part of PTG and my reappraisal? Rumination? An exercise? So on some level it is a testimony to PTG.

My narrative came well before reading the literature. And since the professionals imbued me with  PTG like throwing fertilizer on a mushroom in a dark cellar I ate it up. This is not an amazing unicorn, pixie dust, Pollyanna view of my growth/recovery. More to the point, I have adapted to my life's shit storm in a positive way. I guess that’s an outcome of sorts.

  • Openness to new experiences: Yes I was and am driven to learn and understand
  • Hardiness and a sense of coherence: Yes to a point though I am not sure I see it. Perhaps I am not attuned to what I can't do. I do plunge ahead. Check with expert on this one. 
  • Dispositional optimism: Not me 
  • Internal locus of control: Beyond my pay grade to say yes or no
  • Positive re-appraisal: I would say no, but if you are reading this it must be yes
  • Sense making and the quest for meaning: After editing this over and over I would say yes
  • Rumination: Yes
  • Spirituality/religious coping: No
  • Acceptance coping: Yes

In Closing

PTG is not a one size fits all panacea. Zoller & Maercker closed their review with the following

Clinicians ought, however, to remember that the absence of growth should not be regarded as a failure. Therapists should be particularly careful not to suggest that patients must grow from their experience. Such suggestions may be offensive and minimize the patient's experience. Furthermore, we would like to remind that there is no evidence up to date that PTG is necessary for successful recovery from trauma.

And I would caution the authors I have cited and linked to spend considerable time examining the controversies and questions surrounding PTG and what future studies should do or not do. Basically they all want to see longitudinal cross sectional studies that do not reside solely on patients self-perception.

PTG may not be necessary for recovery but in my view, albeit 20/20 hindsight, it presents an interesting and important model that warrants consideration and further study which all these authors and others are doing. For those of us in the middle of loss and trauma and have a certain life view PTG is something to consider. Think about the kid locked in a room with 10” horse poop on the floor. He is digging holes for hours in the poop. When asked why he’s doing that he responds, “All this horse poop means there is a pony in here, I’m looking for it.”  Perhaps whether it’s PTG or just plain old stubbornness and desire to climb out of the pain, looking for a pony may yield results. And consider this in light of the aging baby boomers, CS Lewis said in his essay on grief that one member of every couple will suffer grief. A lot of people going forward will need help.

Additional Reading

Here are some links that take this topic further.

Factors Contributing to Posttraumatic Growth

Coping processes relevant to posttraumatic growth: an evidence-based review.

Bibliometric analyses on the emergence and present growth of positive psychology

Yet in comparison to other psychological sub-disciplines and areas, literature output remains rather low. However, results on publication types and media point at a broad‐range impact of positive psychology on various applied and basic psychological sub-disciplines. Together with the solid empirical foundation of positive psychology's literature, this leads to a positive prognosis for the further development of positive psychology

Positive psychology: Introduction to the special issue

Human strengths and well-being: Finding the best within us at the intersection of eudaimonic philosophy, humanistic psychology, and positive psychology.

Great expectations: A meta-analytic examination of optimism and hope.

Trauma and Transformation: Growing in the Aftermath of Suffering

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Reader Comments (3)

Mark,

You have the makings of a multi-session Tweetchat on grief and resilience. It is one thing to know the steps of grieving and quite another to cultivate a way of out of the depths of depression. Share your insights on post-traumatic growth on Twitter where others can access it.

Well done,
Carmen

November 11, 2013 | Unregistered CommenterCarmen

Mark,
I think Carmen is on track, though I've never done a tweetchat.
Excellent post! The info is still swirling in my grief-clogged brain, but I will be back to work on it some more. Thank you and I am terribly sorry for your loss.
Patti
P.S. A friend posted this on Facebook, fyi

November 12, 2013 | Unregistered CommenterPatti Hall

And I thought papers were just for college students, since I have two of them living in my house. What a well -written paper--well thought out. I am sorry you lost Donna, the love of your life, but I can see personal growth and it seems to come directly from that experience of losing her. From losing Laura I can tell you that grief causes growth and learning, but that's just from my own experience. Good job!

December 19, 2013 | Unregistered CommenterBecky Malloy

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