Rates of Prolonged Grief Disorder: Considering relationship to the person who died and cause of death, 2023, Thieleman et al

Background
Prolonged Grief Disorder (PGD) was recently included as a disorder in DSM-5-TR despite some controversy. The rate of PGD is known to vary according to a number of factors and little is known about how bereaved individuals view the diagnosis.

Methods
This cross-sectional study assessed PGD rates using the Prolonged Grief-13-Revised (PG-13-R) among a large sample (n = 1137) of bereaved individuals, considering the relationship to the deceased and cause of death. It also investigated bereaved individuals' attitudes toward the diagnosis.

Results
Overall, 34.3 % of the sample met PGD criteria. Bereaved parents had the highest rate (41.6 %), followed by bereaved spouses/partners (33.7 %) and siblings (29.4 %). According to cause of death, those bereaved by substance overdose had the highest rate (59.1 %), followed by homicide/suicide (46 %) and accidental (36 %). The majority of respondents (65–95.6 %) viewed their responses, measured by the PG-13-R items, as normal, and 98.1 % agreed that their responses in general were normal. Fewer than 12 % reported that a PGD diagnosis would be helpful to them.

Limitations
This study used a self-selecting, non-representative sample that was predominantly female and white. Findings may or may not apply to more diverse groups and cannot be generalized. This study also used a self-report measure rather than a clinical interview.

Conclusions
In line with prior research, this study found higher rates of PGD in specific subgroups, including bereaved parents, spouses, and those who lost loved ones to substance overdose, homicide/suicide, or accidents. Bereaved individuals in this sample generally did not view receiving a diagnosis of PGD as helpful.

Paywall, https://www.sciencedirect.com/science/article/abs/pii/S016503272300945X

 

Posting just because I can't believe that they created a disorder out of grief.

 

Prolonged grief disorder

Perhaps there's a difference between grief as an expected response that resolves over time and grief that becomes all encompassing and debilitating and which never resolves - the former is 'normal' and the latter is 'disabling'. It's perhaps one of those psychological states where the harm is experienced more by those around the affected person than the individual themselves who retreats into a misery state that has protective value for them but is pretty horrible for those around them. One of the challenges of psychiatry is that it often involves the interactions of the patient with others, rather than simply an issue of treatment or cure for the patient alone.

 

I wonder if it ever occurs to these researchers that they'd be a lot more use to society if they went to the pub instead?

 

Thank-you for posting this. I have no words at present!

 

There are cases of people never seem to overcome the grief and get on with their lives. Even years later all they seem to talk about is their dead relative. Usually though a mood disorder or substance misuse diagnosis will cover this pathological reaction. So I’m not quite sure why this new category is needed.

 

I felt the same when psychiatrists came up with "Oppositional Defiant Disorder" and used it for toddlers having tantrums. Got to get those psych labels in early, haven't they?

 

Indeed

The mind boggles

 

It the individualisation of suffering then pathologizing the bearer of this suffering that I object to.

Grief can be overwhelming without support.

People in the most overwhelming stages are generally avoided by others in the dominant cultures.

If grieving people want to be around others with the comfort of company they will usually need to perform non-grief in order to be accepted. Or show time limited episodes on a schedule that others decide is “healthy” or respectable. May also be required to display some signs of outward grief behaviour but only to the degree others feel comfortable with. Otherwise one may be considered cold hearted or “unhealthy”. All this will disrupt the natural flow of grief through a bearers body, body may be left carrying more of this energy being than can be borne at any one time. Maybe then in a this state other functions of life will be more difficult to manage or maintain.

It seems very much like the way in which we, are told not to “boom and bust” what schedule we should stick to be “healthy” and how “unhealthy” it is for us to believe in our own sickness. No matter we lack the support to maintain our health or recover.

Grief can take you under and consume you just as illness can. But it’s not a likely path to take -chosen or unchosen- if safety and support back to community is the alternative.

It is my understanding that when a person falls deep down into grief, either supports were or are not available, or grief has had to be postponed for survival, or assault after assault has been endured without the opportunity to recover or to take sanctuary. So it’s much harder for some to grieve than others. I guess it becomes the easier path to retreat into only when the alternative out of reach.

I would say most people with ME live with ongoing grief because enacting and allowing the process of grief involves facing the reality of loss and we are punished for admitting even to ourselves that we have lost belonging with our community. We are told to choose to reconnect. In reconnecting we are told to perform wellness. If we are sad we are told that there is worse things in life than chronic illness. This is quite true. There are better things too. There are all our hopes and dreams. There is the feeling of being accepted and cared for. The feeling of energy in your body and autonomy and freedom to physically move.


When someone you love dies grief is a lifelong process. The grief then passes on to anyone who loves you. To continue to love someone after they’ve gone is to grieve for them.



If you can’t live I think that maybe because one grief has unlocked a lifetime worth of postponed loss and trauma. And you can’t undo that by attempting to prune out ‘excessive’ grief growth.

There is a very strong current of climate grief running through the peoples of the world and this is overwhelming and soul destroying but the solution isn’t to learn better management of sadness or guilt or anxiety, it’s to take action to protect life on earth. Grief is a powerful energy and we need it raw. I guess this is why we aren’t allowed to have it.

 

Ok, I'll go ahead and have a go at arguing (tentatively) for the pro-PGD position as I think currently the discussion in this thread is fixating on the grief part and missing the Prolonged bit.

In 1997 I lost a family member abruptly. The loss was entangled with a family drama worthy of an Oprah Book Club selection (which someday, if the magic health fairy ever pays me a visit, I just might write) that I won't go into here as it's far too long and complicated. But the grief of that loss was so overwhelming that after nine months I couldn't get out of bed and found myself wishing I would fall asleep and never wake up again. Which prompted me to seek out a therapist from my university psychological services. I was soon diagnosed with Dysthymia and trialed on a couple of antidepressants along with talk therapy. Nothing was particularly helpful, though I suppose the intensity of the grief began to lessen ever so slightly as time passed. At least enough that I could go to class and work (though my work as a grad assistant hardly felt like work).

Eventually I used up my 12 sessions the University allotted to students for psych services. I wandered to a clinic that provided talk therapy via sliding scale by an MA student (which was awful). When my state Medicaid program began including mental health benefits in 2000-2001 or so, I signed up with a clinic that took that insurance. By luck of the draw, I was assigned to a really good therapist who, after seeing me for a month, declared that she didn't think I had Dysthymia at all but simply had had a crappy life with no one to model healthy ways of dealing with emotional distress. She used a form of CBT called Dialectical Behavioral Therapy which was originally developed for people with Borderline Personality Disorder but my therapist tended to use it for most of her clients regardless of their diagnosis. It focuses on teaching tools for regulating emotional distress. And it was what finally helped me move out of that overwhelming state of grief.

Moreover, by the time I began seeing this therapist, my health and functional capacity were deteriorating because of ME/CFS to the point that I was going to have to quit my job and apply for disability. I did not yet have an ME/CFS diagnosis and thought maybe it was all related to my emotional state--or worse, some sort of character flaw. My therapist stated very clearly that something was medically wrong with me--something that required a doctor and that she could not help me with. What she could do was give me tools for navigating the emotional distress that comes with being so ill. She was instrumental in helping me deal with the now added grief of having to give up the academic career that I had been working so hard to achieve. While I'm sure I would have survived all these years of illness and isolation and, yes, grief without the tools I learned through DBT, I would have suffered a lot more.

Now someone would say that a bog standard depression diagnosis was perfectly serviceable here (actually I think @Sid suggested this), and I wouldn't necessarily disagree with that. But my guess is that PGD is probably trying to identify a sub-group within the larger depression cohort. Which given how nebulous a diagnostic category depression is, trying to tease out subgroups is not a bad idea. And in my case, it made a difference with regard to treatment. @Midnattsol's point up-thread about its use with regard to accessing care in the first place is also very valid, if a bit disturbing that it's meant to avoid the stigma of a depression diagnosis.