Prolonged Grief Disorder

There remains a lack of consensus regarding how best to measure PGD. This means that prevalence estimates vary significantly depending on which measurement tool is used (19). Therefore, as research develops, it is possible that future prevalence estimates may differ from current estimates. The current prevalence rate of PGD amongst adults who have experienced bereavement in the U.K is estimated to be between 2.4%-7.9% (11). There are, however, a number of factors which are associated with an increased risk of developing PGD.

Bereavement by ‘unnatural deaths’, particularly suicide and homicide, are associated with prevalence rates of up to 49% (20). Research also shows that ‘younger age of the deceased’ is associated with significantly higher risk of developing PGD, and that this is most significant in the case of reporting the death of a child (20)(11). Lower socio-economic status has also been found to be associated with increased risk of PGD (11)(21), as well as having a history of a mood disorder e.g. bipolar disorder, major depression; (22)(23). Moreover, research suggests that older adults may be more at-risk of developing PGD; however, further research is required to establish this claim (24). Pregnancy loss at any gestational stage represents a traumatic loss, with birth parents exhibiting an elevated risk for developing Prolonged Grief Disorder (PGD). This vulnerability is shaped by multiple factors, including the availability and quality of social support, individual coping mechanisms, and the specific circumstances surrounding the loss. In light of this, comprehensive psychological and trauma informed bereavement care pathways should be integrated into perinatal and maternity services. Recent systematic reviews and clinical guidelines underscore the necessity of early identification and tailored interventions to mitigate the long-term impact of PGD (25).

Research into rates of PGD in children and young people (CYP) in the U.K is lacking; however, according to the ICD-11 (3), prevalence rates for CYP in Europe are estimated to be around 12% (26).

This information is for commissioners, managers, trainers, and health care practitioners to consider the evidence base for the delivery of psychological interventions for people with PGD. This information is also for people diagnosed with PGD, their families, and carers.

This topic introduction page covers evidence-based psychological interventions used to treat PGD in children, young people, and adults, and the psychological practice/settings in which these interventions can be delivered. This topic does not cover pharmacological interventions or interventions which are not informed by psychological theory. There are a wider range of non-psychological interventions and supports that are beyond the scope of this topic and information regarding these interventions can be found at:    

NHS Inform: https://www.nhsinform.scot/care-support-and-rights/death-and-bereavement/

Good Life, Good Death, Good Grief: https://www.goodlifedeathgrief.org.uk/

At a Loss: https://www.ataloss.org/ (can be used to identify local / national sources of support - catalogue feature on the site)

National Bereavement Alliance: https://nationalbereavementalliance.org.uk/

Childhood Bereavement Network: https://childhoodbereavementnetwork.org.uk/

National Bereavement Care Pathway for Pregnancy and Baby Loss: https://www.nbcpscotland.org.uk/

NES Bereavement Education Programme Resources for Health and Social Care staff: https://www.sad.scot.nhs.uk/

 

To be consistent with our focus on interventions with the highest levels of efficacy and the strongest levels of evidence, where these exist, psychological interventions for treating PGD with no evidence and low levels of efficacy have not been included. Non-psychological interventions, such as psychosocial interventions and pharmacological interventions are also not included.

The evidence tables below include interventions with high and moderate levels of evidence (A and B) and moderate to large levels of efficacy. The evidence is obtained from systematic reviews/meta-analyses and RCTs of psychological interventions. 

Overview of Evidence for CYP

Due to developmental differences, children and young people can present with different grief reactions to adults. These differences affect treatment design and planning (27), however, there is a lack of research into grief-focused psychological interventions for CYP specifically.

Two recent systematic reviews investigated the effectiveness of psychological interventions for PGD in CYP (28)(27). They found that the overall quality of evidence supporting these interventions is low (28), with only one intervention (CBT Grief-Help (29)) meeting criteria for inclusion in the evidence table (see details below). The overall low quality of evidence can be attributed to a number of methodological and study limitations. These include lack of high-quality RCT’s; lack of follow-up assessments; high risk of bias; and high heterogeneity of measures and outcomes (28)(27).

Moreover, the representativeness of the current research is limited. Many studies focus on mid-adolescent age (excluding younger children and older adolescents), parental death (excluding loss of sibling, friend, or other close relatives), and lack CYP from low-income households and non-western backgrounds. Furthermore, studies tend to exclude CYP with comorbid trauma and mental health conditions, yet in real-world settings, these are common and relevant to treatment (27). 

CBT Grief-Help is a CBT-based intervention involving 9 individual child sessions and 5 separate parent sessions (29). Grief-Help significantly reduced PGD symptoms at post-intervention as well as 3, 6 and 12 month follow-up points with medium effect sizes compared to supportive counselling (29). This evidence is supported by results from a feasibility and multiple baseline study (30) as well as a non-randomised open trial (31) - both demonstrating the preliminary efficacy of Grief-Help. Similar to interventions for other disorders in CYP, parental involvement may be a significant factor in improving the effectiveness of PGD interventions for CYP (29)(27). However, further research directly investigating parental involvement would be required to establish this.

Other interventions were reviewed but there was a lack of evidence for inclusion. There is emerging evidence supporting the effectiveness of other psychological interventions in the treatment of PGD in CYP. These include Grief and Trauma-focussed CBT (32); Culturally

-adapted-CBT (33); Trauma and Grief Component Therapy for Adolescents (34)(35); and the Family Bereavement Programme (36). However, the research into these interventions has significant methodological limitations, such as lack of randomisation and control procedures; small, non-representative samples; and the use of out-of-date, heterogenous and proxy measures of PGD. As such, these interventions do not currently meet Matrix criteria.

Overview of Evidence for Adults

There is currently no clinical guidance for the treatment of PGD. Nonetheless, a substantial body of research from RCTs, systematic reviews and meta-analyses supports the efficacy of psychological interventions for PGD in adults (13)(14)(37)(16)(15)(38)(39). The overall quality of this evidence ranges from low - high. Whilst there are many RCTs and meta-analyses conducted to sufficient quality standards, there remains some general methodological limitations in the current research, such as diverse measurement tools, lack of follow-up assessment, and small sample sizes. Moreover, the majority of the research has been carried out on middle-aged, white, female participants (18).

In addition to addressing these limitations mentioned above, researchers recommend further investigation into specific “at-risk” populations such as suicide (40)(41), violent deaths (42), older adults (43), and parents (1). They also recommend further research into various intervention factors such as format, delivery, protocol components, and alternative non-CBT interventions (37)(18). This will help provide a better understanding of what types of interventions work best for which specific groups and individuals. 

Initial systematic reviews of grief-focused interventions found that universal and preventative interventions (targeted at people experiencing normal grief reactions or individuals ‘at-risk’ of developing PGD) were not effective at reducing grief symptoms, but that targeted interventions (offered to those with indicated, clinical-level PGD symptoms) were effective with a medium effect size (13)(15). These findings were further supported by a more recent review and meta-analysis by Johannsen and colleagues in 2019, that also demonstrated a medium effect size for psychological interventions (14).

Grief-focused CBT-based approaches

Interventions based on cognitive behavioural principles are the most widely researched interventions for PGD. Most grief-focused CBT protocols are based on Boelen and colleagues’ (2007) cognitive-behavioural conceptualisation of complicated grief (now prolonged grief) (44) . They identify 3 core processes underlying prolonged grief which are targeted by CBT interventions: a) insufficient integration of the loss into autobiographical memory, b) negative global beliefs and misinterpretations of grief reactions, c) anxious and depressive avoidance strategies. Evidence from a recent meta-analysis and systematic review suggests that grief-focused CBT interventions are effective at reducing PGD symptoms with medium - large effect sizes, as well as reducing comorbid PTSD and depressive symptoms with a medium effect size and anxiety symptoms with a small effect size (37). This review included a wide variety of CBT protocols with varying delivery methods, formats, and components - including some interventions with additional components from other therapies, such as eye-movement desensitisation and reprocessing therapy (EMDR) and Interpersonal Therapy (IPT). 

Prolonged Grief Therapy

Prolonged Grief Therapy (18)(PGT; previously Complicated Grief Therapy) is the most common and supported intervention for PGD. PGT includes exposure and behavioural activation components from CBT, as well as components from Interpersonal Therapy and Motivational Interviewing. The intervention typically lasts 14-16 sessions. RCTs have demonstrated that PGT is significantly more effective than IPT alone (45) psychotropic medication (46), and supportive counselling (47), and is effective for both the general population and older adults (47)(48)(49). It has also been found to be effective delivered as a group intervention (50) however, there is less evidence evaluating groups than individualised delivery.

CBT for Prolonged Grief

Several RCTs also demonstrate the efficacy of standard, individualised CBT interventions (without additional non-CBT components) (44)(51). These interventions involve a mixture of cognitive restructuring, behavioural activation, and exposure components - lasting between 12-24 sessions. They have been found to have a medium-large effect on PGD symptoms when compared to supportive counselling or waitlist control groups (37).

Digital, guided CBT (with feedback)

Several RCTs have assessed the efficacy of guided, digital CBT interventions and these have been summarised in a meta-analysis (38). The protocols are grief-adapted versions of Cognitive Therapy for PTSD protocols (52)(53), and are based on principles from the Pennebaker Writing Paradigm (54). Most protocols also tend to include additional adaptations depending on the type of loss (e.g. suicide, cancer or perinatal bereavement). They typically involve 1-2 written assignments per week, each lasting 20-45 minutes over a period of 5-7 weeks (typically 10 assignments in total). The research suggests that receiving individualised feedback from a trained therapist on each writing assignments is essential to the effectiveness of the intervention (38). They have been found to be effective at reducing PGD symptoms with a range of medium-large effect sizes. Whilst these are similar effect sizes to those found in face-to-face CBT, digital CBT interventions have only been compared to wait-list control groups which can lead to inflated effect size estimates.

Group Interventions

Maass and colleagues (2022) conducted a systematic review and meta-analysis of bereavement groups based on varied principles, concluding that the evidence base is weak (16). From the 14 RCTs included in their study, they found that bereavement groups were only marginally more effective than control groups at post-intervention, but not more effective at follow-up.

Mindfulness-based cognitive therapy

Bryant et al. (2024) compared grief-focused CBT to mindfulness-based cognitive therapy (MBCT) (55). They found that both grief-focused CBT and MBCT lead to significant reductions in PGD symptoms at post-intervention with large effect sizes. However, at 6 months post-intervention, they found that grief-focused CBT demonstrated significantly greater reductions in PGD symptoms compared to MBCT. Thus, MBCT presents a legitimately effective alternative to CBT, however, CBT may be favoured as a first line recommendation.

Suicide Bereavement

Individuals bereaved by suicide are at elevated risk of developing PGD (41). Two systematic reviews investigated the effectiveness of psychological interventions for individuals bereaved by suicide (40)(41). Both reviews concluded that the evidence is mixed and inconclusive. This may be due to the fact that many of the studies included in these reviews were preventive interventions (targeted at individuals who do not currently meet the criteria for PGD diagnosis but are deemed “at-risk”), which have typically been found to be ineffective at treating PGD (14).  

Other Interventions - reviewed but lack sufficient evidence

The following interventions show promising results for treating PGD: eye movement desensitisation and reprocessing therapy (EMDR) (56)(57)(58)(59); narrative reconstruction therapy (60)(61); meaning-centred grief psychotherapy (62)(63); present-centred psychotherapy (64). However, the evidence supporting these interventions is only preliminary, and is currently insufficient to be included in Matrix recommendations.

Overview of evidence for Older Adults

Older adults may be at higher risk of developing PGD due to social isolation, higher rates of comorbidity, and increased exposure to loss and bereavement (43). In their systematic review, Roberts and colleagues (2019) identified 12 grief-focused interventions targeted at older adults (43). Only 2 of these studies were of sufficient quality to draw evidence from and both of these demonstrated the efficacy of Prolonged Grief Therapy for older adults (47)(48). Other interventions such as Metacognitive Therapy for prolonged grief and (65); Dual-Process Bereavement Group Intervention (66) and Family-focused Grief Therapy (67) show promising results but require further research to be included as a recommendation in the Matrix. Clinicians are advised that there are differences in presentation of psychological problems in later life and to consult Delivering Effective Psychological Therapies and Interventions to Older People for further information on factors relevant to practice.

Overview of Evidence for Harms and Adverse Effects

Like all treatments, psychological therapies also have the potential to have adverse effects. Until recently, information on potential harms and rates of adverse effects have not been gathered systematically (see information relating to safety in the delivery of psychological therapies). Although reports of adverse effects are increasingly included in research trials and gathered as part of service provision we do not know if psychological interventions cause more, fewer or similar numbers of adverse effects than no treatment or another treatment, because the evidence in this area is of very low quality at present.

Recommendation	Who for?	List of Interventions	Type of psychological practice	Evidence	Efficacy
First line recommendation	All levels Age 8-18 and caregivers	CBT “Grief Help” Individualised, face-to-face (9 sessions + 5 counselling sessions with caregiver)	Specialist	A	Medium

Recommendation	Who for?	List of Interventions	Type of psychological practice	Evidence	Efficacy
First Line	Adults presenting with prolonged grief	Prolonged Grief Therapy Individual, face-to-face (14-16 sessions)	Enhanced/Specialist	A	Medium - large
First Line	Adults presenting with prolonged grief	Grief-focused CBT Individual, face-to-face (12-24 sessions)	Specialist	A	Medium - large
Alternative (weaker evidence)	Adults presenting with prolonged grief	Digital, guided CBT with therapist feedback 10-12 assignments	Enhanced/Specialist	A	Medium - large
Alternative (less evidence)	Adults presenting with prolonged grief	Group-based Prolonged Grief Therapy Face-to-face (14-16 sessions)	Enhanced/Specialist	A	Medium - large
Alternative (less evidence)	Adults presenting with prolonged grief	Mindfulness-based Cognitive Therapy Individual, face-to-face 12 sessions	Enhanced/Specialist	B	Large

Advisory Group: Paul Graham, Debbie-Jo March, Steven Millar, Janice Nicholson, Leeanne Nicklas, Marie-Claire Shankland, Clare Tucker.

Technical Group: Steven Millar, Leeanne Nicklas, Marie Claire Shankland

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