A digital approach to grief support and the treatment of post-loss mental health problems

"It is in your head every hour of every day, the grief never leaves you, and if it does go for a bit, it comes back with a big grey wave. So you learn never to step too far from it because the consequences are so great."

Bereavement following the death of a close loved one can set in motion a variety of biological and psychological processes and is often associated with substantial emotional pain. Sometimes grief can get stuck, leaving the individual in a lasting state of distress that interferes with their ability to function in their daily lives. This is known as Prolonged Grief Disorder (PGD). Around 500,000 people die in the UK every year, leaving behind roughly 5 very close loved ones. Research suggests that approximately 7-14% of bereaved people will struggle to adapt after their loss, resulting in 175,000-350,000 new cases of PGD every year. Grief support is still largely provided in an unstructured way delivered via trained volunteers. Resources are limited and many individuals who need support are unable to access it. This project aims to develop and provide initial support for a digital intervention for PGD.

Recent findings suggest that the way a person recalls their loss, thinks about themselves, their loss and others, and connects to others socially are linked to severe and long-lasting grief reactions. Targeting these factors in therapy is likely to prove helpful in reducing distress after loss. This project aims to maximise access to a bereavement support programme by delivering the content of the programme over the internet with help from trained therapists. Users log in to the programme at their convenience and work their way through the targeted modules personalised to their needs with support from their therapist via a messaging system and weekly phone calls. A linked smartphone/tablet application can help the user with specific problems on the go, such as sleep support, in the moment coping strategies, and the ability to track their distress on a daily basis. They can also chat with other users of the programme in the 'Connect' feature that matches users who have experienced similar kinds of losses.

The proposed project will develop and test the acceptability of the programme to bereaved adults. Are users able to log on and engage with the content? Are they able to finish the programme? Do they consider the programme acceptable and worth the investment of their time? Are they willing to wait for 12 weeks before starting the programme? Intervention development combines the expertise of clinical psychologists and the lived experience of our patient and public involvement panel (PPI) who have guided this proposal, study design and will continue to advise on the development of the programme. The modules we develop will be hosted on an existing web platform developed by Ehlers and Clark's team at OxCADAT and King's College London that will be customised specifically for use with sufferers of PGD and display new modules for PGD to be developed in this project. In an RCT, we will assess individuals' symptoms while they either wait for the programme or while they use the programme. This initial information will inform how many participants are needed in a larger comparison study to ensure the best chance of detecting any improvements between groups. If a larger study confirms that the intervention is helpful in reducing distress after bereavement, we will make the intervention available to the NHS, other health care service providers, and across the charity sector.

Research question: The primary objective is to develop and provide preliminary empirical support for a therapist-assisted digital Cognitive Therapy programme for the treatment of prolonged grief disorder (PGD), a psychological problem that can result from the death of a significant person.

Background: PGD is associated with increased risk of mortality, particularly suicide, and poorer physical health outcomes but is not currently treated within the NHS. Sufferers are often inappropriately treated for depression or not treated at all. PGD has recently been included in the international classification of diseases manual (ICD-WHO) meaning the NHS will likely need to provide services as early as 2022.

Aims: To develop an empathic interactive, multi-media, internet cognitive therapy programme for prolonged grief (iCT-PG), designed specifically for bereaved people, to be delivered on computers, tablets and smart phones. The programme's content will target factors shown in my recent DPhil work to be linked to severe and enduring grief reactions. Users will work through core modules and, in collaboration with their therapist, decide on specific modules relevant to their type of loss (e.g. suicide) and most pressing concerns (e.g. guilt). The result will be a highly individualised treatment approach.

Methods: A small developmental case series (N=8-10) on the whole treatment with bereaved individuals who have experienced different kinds of losses (i.e. who died and by what means) will ensure relevance for a wide range of losses. Final iterations will be incorporated before running a randomised wait-list controlled feasibility trial (N=46). This design will provide process data on feasibility, acceptability, compliance, retention and delivery. A trial of this size will provide point estimates of the effect sizes (and confidence intervals) of treatment on the symptom outcomes (PGD, PTSD, anxiety and depression) necessary to inform the sample size of a full trial.

There is an urgent clinical need to develop and disseminate effective treatment for PGD following bereavement. Around 7-14% of bereavement individuals will develop PGD, with around 175,000-350,000 new cases every year in the UK. Research indicates bereavement significantly increases the risk of mortality and poorer physical health outcomes. Bereaved individuals are also three times more likely to die by suicide than the general population, representing a significant level of morbidity nationally. Despite this, the NHS does not currently have any specific treatments options for PGD. Sufferers are often inappropriately treated for depression, a common comorbidity, but not the primary problem, or not treated at all. The costs associated with supporting patients places a significant economic burden on healthcare providers. Health econometrics from my work indicate that individuals suffering from high grief in the first six months of loss report greater impairment in social and occupational functioning, were more likely to receive benefits, gain weight, seek treatment for an emotional problem, and take significantly more days off work compared with those with low grief. Furthermore, those whose grief remained high after six months were more likely to experience worse overall health outcomes, and suicidal ideation.

The long-term aim of this research is to deliver the following impact: Increase access to effective evidence-based treatment for Prolonged Grief Disorder for bereaved suffers. This research proposal represents the first stage (development and feasibility testing) of a multi-stage programme of research.

To achieve this long term-impact, the following impact objectives will be met:
1. Develop an evidence-based scalable intervention for Prolonged Grief Disorder providing a PGD-specific treatment option and provide preliminary support for the feasibility of a full trial.
2. Reduce suicidality and improve mental health outcomes.
3. Reduce the burden on mental and physical health services evidenced through fewer trips to the GP, crisis service, unplanned hospital visits.
4. The families and close persons of the PGD sufferer will benefit from reductions in fear and worry as a consequence of the anticipated improvements experienced by the programme user.
5. The programme, if successful at full trial, will contribute to the international guidelines on the treatment of PGD with the potential to influence policy on a worldwide scale.
6. If effective the programme could be adapted for use with children and young people and recently bereaved individuals in high risk groups such as cancer loss or high cognitive risk factors.
7. The proposed project will allow me to transition to an independent researcher and will involve training in a new skills relevant for a research career in clinical psychology.
8. It will allow me to develop my own supervision and managerial skills and offer the opportunity for a DClinPsy or DPhil student to undertake projects within the Oxford Centre for Anxiety Disorders and Trauma.

By meeting these objectives, this research will provide benefits to the following stakeholders:
Sufferers of Prolonged Grief Disorder
The families and close friends of sufferers
NHS services such as general practitioners, mental health services, physical health services, crisis services, and CAMHS services down the line.
Third sector services who support the bereaved.
Policy makers such as the National Institute of Clinical Excellence
The project staff and students associated with the project