People who have chronic, life-limiting or terminal illnesses experience a considerable number of physical challenges relating to their condition, treatment and side effects. These challenges are often accompanied by emotional, mental, behavioural and spiritual issues that the person also needs to manage.
Many healthcare professionals are aware of these issues and will talk to people about what is going on for them as part of a holistic assessment of the person’s needs. But it can be useful to have a tool to help facilitate this discussion in order that a more structured assessment of the person’s psychosocial needs can be undertaken, and the person referred for further and / or ongoing support where appropriate.
At the same time, there is growing recognition that family members and friends who are supporting their loved one with a serious illness are also dealing with the impact of the illness on their well-being as a carer. This also needs to be addressed in order that they are fully understood and where support is clearly required, an assessment made to decide on the most suitable form of care.
The Attitude to Health Change scales (AHC) are designed to help health and social care professionals who have contact with patients and carers to carry out an effective assessment of the impact of the illness on patients and their carers, and their ability to cope with it.
In some circumstances the AHC scales can then be used to monitor the effectiveness of support – by revisiting the scales after services have been put in place and appraising the outcome i.e. how well the patient or family member are doing at the end of further support.
In 2019 a study which evaluated the perceived merits of the AHC scales, from the perspectives of practitioners using the scales with patients and carers in a palliative care setting, was conducted by Lancaster University. Overall the scales were viewed positively as assessment, intervention and outcome tools and for their capacity to generate conversations about the psychological impact of life-limiting illness. A new iteration of the AHCs resulted from this study and are used in the guidelines which follow.
To download: 1. AHC scale for patients; 2. AHC scale for carers; 3. AHC Practice Work Sheet (patient); AHC Practice Work Sheet (carer), go toResources page.
The AHC is a 9- item measure which uses the Range of Response to Loss model (RRL) (Machin 2014) to explore the interaction between unconscious, reflexive reactions and conscious coping responses to loss and change.
The AHC scale gives practitioners a structure to explore the perspectives that patients have about their illness at any given point in time. There is a comparable scale for carers who are supporting patients.
The items in the scale use three components to explore perspectives on health change:
- Overwhelming distress reactions: characterised by disturbingly intrusive thoughts, persistently painful emotions and a sense of losing its meaning;
- Controlled reactions: characterised by a belief in stoicism, avoidance of expressions of distress and diverting attention away from what has been or is being lost;
- Resilient coping responses: characterised by an ability to face the feeling of loss, a sense of personal resourcefulness to cope with the consequences of loss and a hopeful and positive sense of being able to accept the loss.
In the AHC scale, each of these components is given a score and the person’s overall vulnerability is calculated by adding these scores together.
Who might use the AHC?
The use of the scales is currently predominantly undertaken by counsellors and social workers in psychosocial care teams. However, the pertinence of the scales to enhance person-centred care, suggests their potential for use within wider groups of health care staff.
- Family support volunteers
How it the AHC used?
- Screening for vulnerability
- Assessing for support needs
- Identifying appropriate interventions
- Monitoring the effectiveness of the intervention
- Monitoring the progressive changes in the patient /carer
How do organisations need to prepare to implement the AHC?
It is important for service managers and team leaders:
a) to understand the rationale for the scale’s use,
b) to appreciate its pertinence for the work of the service,
c) to ensure it is used competently.
- The provision of induction and ongoing training: to ensure knowledge of the theoretical underpinning of the AHC scales, understanding the link between theory and practice, and skills in the sensitive use of the scales. See Practice Competency document (Appendix 1).
- Addressing practitioner personal / professional perspectives on the AHC scales (positive and negative) to ensure that implementation can take place smoothly.
- Ensuring practitioners adhere to the Protocol for use of the AHC scales – set out in these guidelines.
- Understanding the place of clinical judgement in gauging the timing and appropriateness of using the AHC within a flexible policy for procedures and practice.
- Consider the resource implications: administrative time, training costs, IT systems etc.
How do practitioners need to prepare to use the AHC?
It is important for practitioners:
a) to understand the rationale for the scale’s use,
b) to appreciate its pertinence for their own work,
c) to employ it competently.
- Induction and ongoing training: knowledge of the theoretical underpinning of the AHC scales, understanding the link between theory and practice, skills in the sensitive use of the scales etc. See Practice Competency document (Appendix 1).
- Exploration of personal / professional perspectives on the AHC scales (positive and negative) by the practitioner and honesty in addressing how this might impact on practice use of the AHC. This needs to be addressed in training.
- Understanding of and adherence to the Protocol for use of the AHC scales – set out in these guidelines.
- Understanding of the place of clinical judgement in gauging the timing and appropriateness of the AHC
Guidance for putting the AHC into practice
Exercising clinical judgement – is it appropriate to use the AHC?
Where a service/care team has decided to use the AHC as a systematic tool of assessment clinical judgement is still necessary to determine whether its use is appropriate with ‘this patient/carer’ at ‘this point in time’. Clinical judgement is crucial to the appropriate, effective and flexible use of the AHC.
Factors influencing clinical judgement when considering using the AHC
Likely contraindications for use of the scale with patients:
a) Intense physical and/or emotional distress;
b) Undergoing intensive treatment procedures;
c) Very close to the end of life.
Likely contraindications for use of the scale with carers:
a) Intense emotional distress;
b) Demanding physical preoccupation with care of the patient;
c) Demanding preoccupation with other caring/social responsibilities.
If the introduction of the scale is met with patient or carer resistance, the practitioner might:
a) Accept that as a reason not to use the scale;
b) Gently explore and/or challenge the reasons for resistance;
c) Introduce the scale at a later date.
A crucial aspect in exercising clinical judgement is deciding the appropriate timing for using the AHC. This should not simply be a practitioner perspective but patients and carers should be given their own voice as to their readiness to engage with the scale through discussion about the purpose and processes of using the AHC (see A1 below).
A protocol for implementing the AHC scales in practice:
A. Working with the AHC scale
- Introducing the AHC to patients/carers and explaining the processes involved:
i) Describe the purpose of the scale…… as a way to help patient / carer and practitioner have a clear picture of how the illness/ health change is being experienced.
ii) Explain how the AHC is used by the practitioner…… to decide what might be the most appropriate form of support for the patient / carer.
iii) Give a copy of the scale to the patient/ carer……and explain the 5 choices for each item on the scale (from strong agreement to strong disagreement).
iv) Assure…… the patient / carer that there are no right or wrong answers.
2. Gaining patient / carer agreement to use the AHC:
i) Provide information…… on record keeping and confidentiality.
ii) The right to withdraw…… at any point in the process of the scale’s use.
iii) It is good practice…… to check at points during the use of the scale that the patient / carer is comfortable with the process and happy to continue.
3. How to use the AHC scale:
i) Decide…… the practical process for using the AHC e.g. whether the patient or practitioner will read out each item. Agree that the practitioner may note down qualitative comments. (Factors such as literacy and visual capacity need to be taken into account.)
ii) Clarify…… any specific words in the AHC scale or the meanings they are meant to convey which are unclear to the patient / carer making sure they reflect the concepts in the Range of Response to Loss model. (See Appendix 2.)
the patient / carer to say more about the thoughts and feelings which each of the 9 statements brings up for them. When exploring qualitative comments, even for preliminary assessment purposes, if the patient / carer chooses to engage, a significant/ therapeutic conversation may develop. (See therapeutic use of the AHC in sections B, C4, D1 and E below.)
iv) Explore wider issues……
Recognise the contextual factors which influence how changing health issues are likely to be experienced and expressed, and reflected in the AHC responses:
i) culture, ethnicity, religion / beliefs.
ii) family, education, employment.
iii) current circumstances – relationships, roles, responsibilities, finance, housing etc.
iv) collectively these factors – i) ii) iii) are likely to effect the nature of social support and its availability to the patient / carer.
Wider issues can be explored alongside use of the AHC but some services may use additional questionnaires to capture this information.
B. On completion, discuss the responses to the AHC scale with the patient /carer:
i) Ask…………. the patient / carer how it felt using the scale.
ii) Did any one item…….. stand out for the patient / carer as significant or especially difficult to answer?
iii) Reflect (with the patient / carer from your perspective as practitioner)…..
on what you thought were the main issues or themes made by the patient/carer during this session. Anything else that struck you as salient, interesting, illuminating or important in this session. What you see as needing to be taken forward or followed up?
With practice it becomes easier to recognise, as the scale is being completed, the relative emphasis on overwhelmed feelings, the desire for control, or evidence of resilience.
C. AHC – Assessment: interpreting and exploring the AHC responses
There are three steps to interpreting the quantitative AHC scores and additional guidance for the qualitative exploration of patient/carer responses.
1. The Vulnerability Indicator score
The Vulnerability Indicator score provides an overview of the level of the patient’s / carer’s vulnerability. This will signal the likely level of support that is needed. The score will be supplemented by other clinical observations about the patient/carer vulnerability and needs.
It is important NOT to use a score sheet with patients / carers or disclose the score as this can convey a sense of being tested and may prevent honest responses.
It should be noted that the scoring system in which the following levels of vulnerability were classified as:
> 24 severe vulnerability
21-23 high vulnerability
< 20 low vulnerability
was one validated for the Adult Attitude to Grief scale (Sim, J., Machin, L and Bartlam, B 2014) and may be subject to revision when further validation of the psychometric properties of the AHC is completed.
2. Look for evidence of bias in the AHC responses
Does the patient or carer have a tendency towards being overwhelmed by feelings (items 2, 5, 7), controlling of feelings (items 4, 6, 8) or resilient in their coping with illness (items 1, 3, 9)? Use the grid in Appendix 3 to help you look at these tendencies. Also consider what the patient’s / carer’s additional comments tell you about their way of reacting and coping with their illness and its consequences.
Always remember that if you are using the scores to look at individual categories, the ‘resilient’ item scores are reversed in order to show vulnerability.
3. Look at the relationship between the Overwhelmed, controlled and Resilient items
i) Patients/carers who agree strongly with both the overwhelmed and controlled items in the AHC show a tension between wanting to be in control while finding it difficult in manage the strong emotions which their illness prompts. This state of vulnerability is increased when a patient /carer also strongly disagrees with the resilient items.
ii) Patients /carers who disagree with the resilient items and have some level of agreement with the overwhelmed and controlled items are also vulnerable.
Lower level of vulnerability:
iii) Patients /carers who agree with the resilient items are likely to be able to moderate the impact of their overwhelmed and controlled reactions
iv) It is important to remember that while a ‘controlled’ reaction to illness might indicate vulnerability, control can also be an effective coping mechanism especially when it is combined with resilient responses.
4. Explore the qualitative responses
|AHC scale||Themes and associated issues to explore|
|1. I am able to face up to the feelings I have about my illness.||‘Facing feelings’: The ability to identify/name feelings prompted by the illness/treatment; to acknowledge those feelings; to recognise the impact of the feelings; to be able to talk about them.|
|2. I find it difficult to switch off thoughts about my health.||‘Disturbingly intrusive thoughts’: What is the nature of these thoughts? How far are they unbidden thoughts and how far is the patient /carer choosing to dwell on them?|
|3. I feel emotionally strong enough to cope with my illness and its consequences.||‘Sense of personal resourcefulness’: A sense of confidence about being able to cope. An identification of where inner strength comes from e.g. previous experience, religious belief etc.|
|4. I believe I should be brave when facing my illness.||‘Belief in stoicism’: How far perspectives learned from family and culture have taught the importance of stoicism/being brave; how far this has become an instinctive reaction shaping how one ‘should’ react to testing life experiences such as illness.|
|5. I often feel emotional about my health e.g. fearful, anxious, sad………..||‘Persistently painful emotions’: Identify the nature of emotion for this patient /carer i.e. other words they might use to describe their feelings. This is likely to be an important dimension in which to give space and safety to talk.|
|6. It is important for me to keep my feelings about my health under control.||‘Avoidance of expressions of distress’: This may be learned within the family or culture – the importance of ‘the stiff upper lip’; ‘big boys don’t cry’. It may be driven by wanting to ‘keep going’ for other people. Explore how far this belief challenges the patient /carer who may be struggling to manage suppressed feelings.|
|7. My illness makes it harder for me to make sense of life.||‘Life losing meaning’: This may prompt an exploration of existential concerns (life, death, belief etc). What has made life meaningful for the patient /carer in the past? How has that changed? Issues of suicidal ideation may also be raised (these need separate assessment and action).|
|8. I try to focus on day to day life rather than my health.||‘Diverting attention’: How far is this a helpful strategy for the patient / carer? Does avoidance get in the way of addressing the challenges and choices relating to the illness and its treatment?|
|9. I believe that I will come to accept my illness and its consequences.||‘Hopefulness / positivity’: How far has the patient /carer been able to confront the reality of the illness and come to terms with what this means for treatment, care, outcome etc.|
* Sometimes there is an apparent mismatch between the Vulnerability Indicator score and the qualitative comments. It is then necessary to use clinical judgement in reaching a view on the nature of the patient’s / carer’s vulnerability. In this situation discussion in clinical supervision is also necessary.
It should be noted that for practitioners who are using the AHC with both a patient and their main carer the assessment process will provide an opportunity to see how far the reactions and coping responses to the patient’s illness / condition coincide or show variable perspectives. Awareness of differences can be especially important in recognising personal tension which may exist between the patient and their carer and which potentially may influence health care decision making. The significance of personal differences and its impact on interpersonal relationships will be especially important when there are joint main carers e.g. siblings, parents of a young person, and who have different reactions to the illness, its consequences and treatment plans.
D. AHC – Intervention
When the AHC is used to assess the need for support, the level of vulnerability will indicate the appropriate level of intervention. A hierarchy of patient support needs based on four levels of psychological distress were identified within NICE guidance for ‘Improving Supportive Care for Adults with Cancer’ (2004) and are used here as the basis for classifying different levels of intervention.
Figure 1. Components derived from the NICE guidance (2004) showing levels of need and matched interventions.
1. Conversation generated by the AHC as an intervention:
a) Members of the health care team when faced with a distressed patient /carer may use the AHC for screening purposes and find it naturally prompts a meaningful conversation about reactions to the illness and insight into how the patient /carer is coping with their situation.
While the conversations generated by the AHC may constitute an intervention, it is important to recognise that where there are significant levels of distress more focused therapeutic work by specialist psychosocial practitioners will be needed.
As noted at the beginning of these guidelines more research is needed to determine how AHC generated conversations led, for example, by nursing staff, might most effectively and appropriately be carried out.
b) Members of the psychosocial care team may use the AHC for assessment purposes and find within that function it naturally prompts a broader conversation on issues of importance to the patient /carer.
In situations a) and b) focusing on items in the AHC which the patient/carer sees as significant or troubling and any which the practitioner judges to be poignant provides an opportunity for looking more deeply at ways in which the illness is distressing and creating difficulties in coping. These conversations may also involve joint work with a patient and their carer to explore the implications of difference between them. (See C4 above)
c) In order to be effective all levels of intervention, (see Figure 1), are dependent upon sensitively conducted conversations. With more focused therapeutic work (at levels iii and iv) those conversations will need to be structured and the AHC can be used to explore barriers to resilience in the face of changing health / illness. (See Appendix 4.)
2. When assessment indicates the need for an intervention, the AHC may be used as a framework for the practitioner and the patient / carer to jointly set goals for achieving a mutually agreed therapeutic objective. For example, to use therapeutic support to safely discuss; feelings; practical issues about the illness; making sense of life in the face of illness etc.
3. When the distress response to changes in health / illness is more complicated and counselling as a third or fourth level of intervention is indicated, a pluralistic therapeutic approach is recommended and set out in Chapter 7 of ‘Working with Loss and Grief’ (Machin 2014).
4. When the AHC is applied as a framework for practice at levels iii and iv it is important to explore the quantitative and qualitative patient /carer responses within clinical supervision in order to determine appropriate and effective therapeutic approaches and strategies.This will assume the supervisor has knowledge and understanding of the AHC and is conversant with the skills necessary to apply it in practice.
E. AHC – Review / outcome
1. Re-use the AHC as part of a monitoring process, to review the patient / carer’s changing reactions and coping responses. This will provide useful insights for the patient / carer and practitioner.
2. At the end of the support process the AHC scale is used to evaluate the outcome of the patient’s/ carer’s capacity to cope with health change / illness.
The nature of the patient’s condition and degree of deterioration is likely in many circumstances to make this phase of practice difficult or impossible.
Bereavement follow-up with carers
When the AHC has been used with a carer during the end of life care of their relative, an assessment of their vulnerability will have been made. This may have indicated the desirability of help continuing after the patient’s death. Reassessment and planning for support can be followed up by the bereavement care team using the Adult Attitude to Grief scale (AAG) which explores the same interactive reactions and coping factors as in the AHC but with the focus on the grief resulting from the patient’s death.
Machin, L. (2014) Working with Loss and Grief. London: Sage.
National Institute of Clinical Excellence (NICE) (2004). Improving Supportive and Palliative Care for Adults with Cancer. London.
Sim, J., Machin, L. And Bartlam, B. (2014) ‘Identifying vulnerability in grief: psychometric properties of the Adult Attitude to Grief Scale’. Quality of Life Research, May;23 (4):1211-20. doi: 10.1007/s11136-013-0551-1. E pub 2013 Oct 16.