Mapping Grief Survey 2024

Report and findings

This report sets out:

1. The background to the survey

2. A summary of the learning from the survey

3. Ways of taking the learning forward

4. The quantitative and qualitative survey results on which sections 2 and 3 are based

1. Background

Having devised the Range of Response to Loss model (RRL) of grief and the associated tools used in practice, I have seen in the last decade an increasing interest in the model and its concepts, amongst practitioners, service providers and researchers. Registration to access practice tools from the mapping-grief.care website has similarly increased, indicting an uptake of this approach to working with grief not only in the UK but also in many countries worldwide. It seemed that the time was right to explore how the application of the model through the Adult Attitude to Grief (AAG), predominantly, but through other measures like the Attitude to Health Change scales (AHC) etc., is being used and experienced.

My interest in how the measures, like the AAG, are being used is to secure best possible practice for the work with grieving people. Foundational to this approach is the need to recognise the RRL as the theoretical underpinning for the tools, which themselves reflect the dynamic nature of grief defined in the model. This needs to be consolidated with skill in understanding the varied manifestations of grief revealed by the AAG/AHC and the indication this gives for appropriately diverse interventions. While there is room for different practice applications in different clinical settings and for practitioners to use their clinical judgement in working with the tools, setting out the parameters for flexibility within the scope of best practice is important.

The survey results provide evidence of the current positive use of the RRL based tools and indications of areas in which thought can be given to improving practitioner and researcher knowledge, understanding and skill necessary to achieve best practice.

2. Summary -learning from the Survey

In March 2024 a mix of ninety practitioner (n= 74) and researcher (n=16) users of the Range of Response to Loss based practice measures responded to the invitation to take part in a survey about their experiences with this approach to working with grief. While 78% of the respondents are from the UK 22% came from a wide range of countries from across the world. This provided a valuable snapshot of the spectrum of contexts in which predominantly the AAG is used. The quantitative data set out the ways in which respondents were introduced to the scale(s) and how they learned to use them, together with information about their practice context and their practice role. More than half the respondents reported that the scale(s) has been adopted and used within their practice team compared with 39% who use it just within their own practice. The experience of use of the AAG et al spanned those still planning to use it, up to one year’s use but those with more extensive experience accounting for almost 60% of responses. The quantitative results are in the results section below.

The personal appraisal of whether the scale(s) worked well, whether more guidance was needed in the scale(s)’s use, or whether the scale(s) did not work as expected, formed the framework for the analysis of the qualitative responses. These responses are set out in the results section below, detailing the specific attributes which respondents identified from their experience.

What is clear from the testimony of many respondents (80%) is the scale(s)’ facilitation of work with grieving people both as a framework for enhancing practice and as an effective focus on loss for clients. A practitioner with a number of years of experience using the AAG wrote:

‘As the only validated bereavement assessment and monitoring tool it has provided evidence to support clinical practice and interventions. It also informs the focus for support delivered. Using the measure is a clinical intervention in itself, encouraging bereaved people to be more self reflective and aware and more likely to engage effectively in support.’

Researchers wrote:

‘I loved the way it was easy to follow as researchers.’

‘I like your approach it makes sense to me as a widow.’

Fewer people reported either the need for more guidance (n=11) or that the scale(s) did not work as expected (n=6). A number of these respondents had not undertaken any training or made use of the practitioner guidance on the mapping-grief.care website. One respondent commented: ‘I needed time to discuss how the AAG works in practice and attend training.’ Lack of training or other induction can lead to misunderstanding about how the scale(s)’ function with assumptions that it/they operate like symptom based tools not as a reflection of an interacting grief dynamic. Taking note of the associated qualitative responses where experience had been more problematic provides important information about the aspects of the scales and their use which need to be addressed.

Situations where language and culture can lead to misunderstanding and/or failure in using the scales
The wording of specific items in the scales which are misunderstood by the practitioner or the client
Where people struggle to complete the AAG or decline
Resolving the ways ‘control’ can be seen as resilience as well as vulnerability
Using the scale non-face to face e.g. telephone, Zoom
Time taken in completing the scale(s) and for administration e.g. scoring, after the session
Sharing scores with clients to give ‘evidence’ of their grief
The scores’ cut off point levels
Where some members of a team like it better than others
Suitability of the AAG for use with teenagers
How the AAG might be used with losses other than bereavement

These points which variably raise issues about clinical engagement with the scale(s), technical elements of using the scale(s), and the scale(s) potential wider use, will help form the agenda in taking the learning forward.

The possibilities for taking the learning forward are shaped by the positive responses to the question in the survey about interest in being part of a Community Practice: almost half of the respondents said ‘yes’ and another third of said that ‘they would like more information’ i.e. together representing 81% of respondents, including all the 20 non-UK respondents.

3. Taking the learning forward

I believe that through best practice and the sharing of that practice, the RRL approach to working with grief may be consolidated and sustained as a model for care in practice and research. To this end I am planning to establishment a Community of Practice, which brings together people who have a common interest and shared experience in this area of practice or research. It will provide a forum for increasing understanding, promoting and sustaining best practice standards and exploring innovative perspectives.

Plans for a Community of Practice:

Setting out a clear definition of the theory and practice of Communities of Practice
Expansion of the mapping-grief.care website to include some demonstration/teaching videos and to widen its function to provide a platform for interaction between practitioners
In conjunction with colleagues planning a strategy and a timetable for a series of online webinars (bearing in mind timing for non-UK participants)
Consideration of the possibilities for a conference (mixed in- person and online)
Recipients of this report are also asked to make suggestions

Linda Machin

2024

4. Survey results

a) Quantitative results

Country of respondents:

77.78%	United Kingdom	70
6.67	United States	6
5.56	Ireland	5
2.22	Canada	2
1.11	Azerbaijan	1
1.11	Belgium	1
1.11	Czech Republic	1
1.11	Iceland	1
1.11	Philippines	1
1.11	Singapore	1
1.11	Turkey	1

Which RRL based measure(s) have you used/are you using?

60.99%	Adult Attitude to Grief scale (AAG)	86
12.77	Attitude to Health Change scales (AHC) patient	18
10.64	Attitude to Health Change scales (AHC) carer	15
5.67	Children’s Attitude to Grief scale (CAG)	8
9.93	RRL – Grief Map (pilot) (GM)	14

How were you introduced to the RRL and the associated practice/research measures e.g. AAG?

15.55%	in the course of grief training	14
10.00	by a colleague	9
46.67	organisation work setting	42
17.78	reading book/article	16
10.00	Other e.g. online search, conference, tutor/colleague etc	9

Have you received any training in the RRL based practice/research measures e.g. AAG?

31.91%	not had any training	30
34.04	a training course led by Linda Machin	32
22.34	a course led by someone who has done Linda Machin’s training	21
6.38	the ‘Shapes of Grief’ training website	6
5.32	Other e.g. in-hospice training, team meetings, read LM’s books etc	5

Are there ways you could suggest to make the website more useful to practitioners or researchers?

32.22%	Not used the website	29
64.44	No, I found it useful	58
3.33	Yes (e.g. demonstration videos)	3

As a user of RRL based measures, like the AAG scale, would you describe yourself as…..

82.22%	practitioner	74
6.67	researcher/academic	6
11.11	researcher and practitioner	10

Practitioner questions:

Practice Context in using the AAG (AHC, CAG, GM)

45.19%	health setting	47
8.65	social care setting	9
15.38	national voluntary organisation	16
11.53	local voluntary organisation	12
15.38	private practice	16
3.84	Other e.g. higher education etc.	4

Practice role in using the AAG (AHC, CAG, GM)

79.12%	counsellor/therapist	72
6.59	organisationally trained volunteer	6
10.98	part of another professional role e.g. nurse, OT etc.	10
3.29	Other e.g. research/evaluation, academic etc.	3

Practice use of the AAG (AHC, CAG, GM)

38.54%	used only within your own practice	37
51.04	adopted and used within your practice team	49
10.41	Other e.g. not yet used, online, couples work etc	10

Current practice use of the AAG (AHC, CAG, GM)

14.28%	planning to use	12
26.19	used for up to one year	22
40.47	used for 1 to 5 years	34
19.04	used for more than 5 years	16

Practice experience of using the AAG (AHC, CAG, GM)

80.23%	the scale worked well	69
12.79	I need(ed) more guidance in using it	11
6.97	it didn’t work in the way I expected	6

Researcher questions:

Context of research activity:

14.28%	for a qualification (i) masters (ii) PhD	2
42.85	for other academic purposes e.g. study of grief	6
42.85	within a health or social care practice setting	6

What influenced your choice of the AAG as a measure to use in your research?

69.23%	Its specific grief focus	9
0	tutor recommended	0
0	mutual decisions with research colleagues	0
23.07	reading book/article	3
7.69	Other e.g. resonated with a personal experience of grief	1

Current phase of research using the AAG

37.5%	planning research	6
37.5	research in progress	6
6.25	research completed	1
18.75	research findings written up	3

Experience of using the AAG:

75.00%	the scale worked well	6
12.5	I need(ed) more guidance using it	1
12.5	it didn’t work the way I expected	1

Would you like to be part of a Community of Practice? (Combined responses from the practice and research sections)

47.77%	Yes	43
33.33	I would like more information	30
18.88	No	17

b) Qualitative Survey results

Responses from those for whom the scale(s) worked well

General perspectives on the scale(s)

Can offer empowerment to those grieving
It can support clients to frame their thoughts when they are overwhelmed by their grief
Helpful and accessible tool(s) – worked well with bereaved and terminally ill clients
As the only validated bereavement assessment and monitoring tool it has provided evidence to support clinical practice and interventions
RRL embedded as the theoretical framework alongside associated practice tools as underpinning clinical practice in whole team
The simplicity of the RRL and how it maps onto other models of grief e.g. attachment theory, DPM and underlying core psychological processes of change as outlined in Acceptance and Commitment therapy, (as the basis for the AAG et al)
Having completed training and a trial that worked well, we plan to roll it out across the bereavement service
Strength as a quantitative and qualitative tool; gives the client words to describe their experience and the statements can lead to further discussion and exploration
Excellent clinical tool(s) –a guide to mapping intervention
Provides evidence to support clinical practice – positive changes correlate with observable and reported changes
A useful ‘outcome’ tool, and helping gauge how things may have moved for the client
Useful as a measure to evidence changes in vulnerability for service funding

‘AAG, AHC-C1 and AHCP1 are well received by service users who often comment how helpful (and validating) they find answering the questions.’ (quote)

The scales’ focus on grief

Gives a good and quick snapshot of a person’s grief
Identifies the dynamics of complex grief – Revealing tool with the R/C/O dynamics of grief
Gives an understanding of the individual response to grief
Gives an accurate picture of client’s grief
Helps in exploring the client’s grief and how they are coping
Encourages people to talk about specific aspects of their grief and provides the opportunity to explore areas of their grief they may not have considered
Identifies challenging areas of grief
Allows focus on the most relevant aspect of grief for the client

‘Helpful for guiding and focussing communication towards grief and bereavement.’ (quote)

The scales’ use in therapeutic engagement

As a clinical tool it helps to establish a strong working alliance and sense of collaboration
Helps the client and practitioner to focus specifically on the bereavement by looking at limitations and strengths (vulnerability and resilience)
Useful as a conversation tool / opens up a dialogue with the client
Useful guide to areas where client needs support and where to direct intervention
Using the measure(s) is a clinical intervention itself – encouraging bereaved people to be more self reflective and aware and more likely to engage effectively in support
Leads to a richer conversation and increased exploration of feelings and choices and helps clients think about their beliefs and behaviours
Each statement allows the client to gauge the ‘clarity’ of their response or the complexity of their response and the challenges or ease with which they are able to communicate their feelings
Helpful for guiding and focussing communication towards grief and bereavement, with a client who has multiple challenges in life historically and in the present
Use as a relational tool to help support my conversations with children and families and to help track progress regarding my grief work with them
Clients find it helpful and insightful – they say shifts and results reflect picture of how they are feeling and behaving
Excellent clinical tool to use in assessment and throughout the work

‘Supports a narrative lens on experience that the client often struggles to vocalise.’ (quote)

‘It (use of the AAG) can be thought provoking and emotive so helps the client to begin the process of opening up. It helps to identify aspects that a client is struggling with so can lead to and establish a focus.’ (quote)

‘It allows the client to be collaboratively involved and offers structure and a narrative outcome measure for both the service the client and the counsellor.’ (quote)

‘Used with patients and carers (AHC) to highlight core beliefs about managing health condition and current challenges/distress. Especially useful with couples – would like to do more exploration of this and potential research.’ (quote)

‘I find it an invaluable tool to get a measure of how the client is coping with their grief when they begin therapy and find it helpful to discuss the results with clients at the end of therapy and celebrate any positive shifts.’ (quote)

Practice procedural issues

Training was helpful on different ways to use it and how to introduce to clients.
Offers a useful triage and understanding of individual response to grief
Used as part of the assessment of clients entering an online counselling service
Use in conjunction with the client i.e. (we) don’t ask them to do it on their own
Use it at assessment, midway and at the end of counselling. Extremely useful as a therapeutic tool and as an outcome measure
Discussion with client comparing before and after scores and how this reflects on the grief process
Use as an outcome measure
Used with grief group as well as individual counselling

Scale(s) worked well but with some limitations

Where English is not a first language there can be misunderstandings
Although results are fantastic, when time is limited scoring takes a while
The organization I work for allow appropriate time for use but it is not a tool that can be used effectively when time is limited
Specific items which are sometimes misunderstood e.g. 2,4,7
A healthy increase in C (control), in an ending score, can result in a contradictory higher vulnerability measure
Clients may want to give a more positive view of how they’re doing at assessment stage and are able to be more honest and open at the end of a piece of work due to the relationship they’ve forged with their counsellor

Responses where more guidance was needed in using the scale

Having used other outcome measures which had a very rigid way of being used, I needed time to discuss how AAG works in practise, and attend training
Working on Zoom and the telephone, need further guidance/ support from managers about using grief tools with clients in complex situations
Many people I support struggle to complete the form, in some cases they decline
Some clients need “number” and “evidence” about their grief
Original cut-off score is not functioning
I still thinking about validity for teens (but it is mostly by lack of time to study well about AAG) so I use it only with adults
Still learning more about the RRL and looking into how AAG may/can be adapted to pre or post death risks screening

Responses where scale(s) didn’t work as expected

Some clients found the questions unclear/confusing
Difficult to make sense of the client’s responses
Some members of the team liked it better than others
Did not fit our service but we want to use something

Research where the scale(s) worked well

Loved the way it was easy to follow as researchers
Used to evaluate Grief workshops to look at patient change – it fits the goal and purpose
Used the AAG in two bereavement studies to evaluate levels of grief in bereavement
Followed the recommendations of published research

AAG not tied to the DSM
As a relational tool to help understand families/ individual responses

‘I like your approach it makes sense to me as a widow’ (quote)

Research where more guidance was needed

Research planning – a grief focus with bereaved alcohol/drug/gambling addicts
Considering using the tool for measurement of effective short-term support

Research where scale(s) didn’t work as expected

Did not correlate with measure of grief disturbance – possible cultural issue

Suggestions for the website

Like to see more ways in which the scales are used for evaluation
Like to see some demonstration videos
Interested in online training