A new diagnosis of a life threatening illness or a clear deterioration in such a condition will present challenges to patients and those people closest to them, to process and assimilate the consequences of these significant life changes. The Attitude to Health Change scales (one for patients and one for their carers) provides tools to explore the feeling and thinking perspectives which indicate how vulnerable or how resilient patients and carers are in facing circumstances of changing health.
The AHC is likely to be used by social workers and counsellors (Family Support teams) within the wider disciplinary health care team who are treating life threatening and life limiting conditions such as, cancer, chronic heart disease, motor neurone disease etc.
The AHCs have two significant functions:
- The quantitative appraisal of vulnerability through the scoring system.
- The generation of a conversation through the encouragement of qualitative response to the items in the scale. This second function provides practitioners with a framework within which to explore the impact of serious changes in health and the patient’s/carer’s coping capacity. The wider conversations about care and treatment choices may potentially flow from this person-centred engagement with patients and carers. It may also highlight differences in the patient and carer perspectives which will be an important guide to the way in which support is offered.
Repeat use of the scale during the illness trajectory will help reappraise variations and fluctuations in response to health changes.
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.
A protocol for implementing the AHC scales in practice:
A. Introducing the AHC to patients/carers
- Explain the AHC scale and its purpose:
i) explain the purpose of the scale – to help patients / carers and the practitioner have a clear picture of how health changes are being experienced and expressed.
ii) explain how the AHC is used in the service and by the practitioner i.e. to help understand patient/carer perspectives as choices are made about treatment and care, and to decide what kind of support may be appropriate within the wider health care plans.
iii) give a copy of the scale to the patient /carer: explain the 5 choices associated with each item on the scale (from strong agreement to strong disagreement).
iv) assure the patient / carer that there are no right or wrong answers.
- Gain informed consent/agreement to use the AHC:
i) Having given the explanations above (1), provide information on your organisation’s policy on record keeping, confidentiality and use of collected data e.g. for audit, research or funding purposes (this is likely to form part of a general contracting process, including GDPR compliance in the UK, and may already have happened).
ii) Where a patient / carer is hesitant, reassurance can be given about their right to withdraw from proceeding with the AHC’s use at any point.
- Use of the scale:
i) decide how the scale will be used i.e. who will read out the statements and agree the practitioner will record the scores.
ii) encourage the patient / carer to say more about each of the 9 items in the scale to increase an understanding of their individual experience and perspectives on health change. Allow this to become a conversation that may raise wider issues than those in the scale and form the basis for further discussion after the AHC has been completed.
B. On completion, discuss the responses to the AHC scale with the patient /carer:
i) ask how they felt using the scale.
ii) ask whether there were particular items in the scale which stood out as being significant or troubling to them
iii) reflect back any of the most obvious dominant issues which have emerged from the responses to the scale.
C. Understand and interpret the AHC responses
There are five steps to evaluating the quantitative information provided by the AHC:
i) The Vulnerability Indicator score is to help the practitioner have an overview of the level of intensity of the patient /carer reactions to changes in health and the level of support this signals. (Vulnerability indicator scale: 0-36 where >24 is severe vulnerability, 21-23 is high vulnerability and <20 is low vulnerability). The scores will be supplemented by other clinical judgement about the client’s vulnerability and needs.
It is important NOT to use a score / numbers sheet with patients /carers as this can convey a sense of being tested and may prevent honest responses.
Always remember that the ‘resilient’ score, having been reversed, is in fact giving you a measure of vulnerability i.e. in re-use of the scale if there is a reduced score for the resilient items it means that vulnerability is reduced.
ii) Look for evidence of a bias towards one or other of the three categories in the scale, by examining the quantitative and qualitative responses in the following clusters; items 2, 5 and 7 (overwhelmed), items 4, 6 and 8 (controlled) and items 1, 3 and 9 (resilient).
In practice there may be no evidence of a clear bias but rather a mix of agreement across the categories requiring more careful interpretation (see iii, iv and v below).
iii) Examine the relationship between the Overwhelmed, Controlled and Resilient scores:
(See Table 1. on the Working with the AAG scale in Practice page for a guide to exploring the comparative scores in the AHC).
- Heightened vulnerability will result where there is equally (strong) agreement with both the overwhelmed and controlled items i. a tension between aspirations for control and unbidden strong emotions.
- Where there is disagreement with the resilient items, the characteristics which underpin positive coping with loss, and some degree of agreement with the overwhelmed and controlled* items, vulnerability is likely to be evident.
- Conversely, where there is agreement with the resilient items the overwhelmed and controlled reactions will be moderated and this will lead to an increased capacity for effective coping.
*It is important to remember that ‘control’, in addition to being a reflexive reaction to loss, can also be a potentially effective coping mechanism. Where there is agreement with the controlled and resilient items the patient / carer is likely to be coping effectively i.e. defensiveness or avoidance are not preventing appropriate management of changes in health and its consequences.
iv) Focus on each item in the AHC which the patient / carer has identified as significant or troubling and any which you as practitioner feel are significant. Invite further qualitative amplification to help identify ways in which the reaction to health change is especially distressing and creating difficulties in coping. This will be a fluctuating reality and one needing revisiting as an illness progresses/deteriorates.
v) Qualitative comments made in responses to each of the items in the scale add richness and depth to the assessment process. They increase both practitioner’s and patient’s / carer’s understanding of the impact of health change and how it is being experienced and expressed. The conversation, which the AHC generates, may continue as part of the on-going therapeutic / support intervention. The support being offered to a patient/ carer in addition to attending to the impact and consequent losses that go with health change can also begin to focus on the resilient items in the scale and building up the potential for positive coping.
D. 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 client.
Practitioners need to be alert to these factors, listening for them as they emerge in the qualitative comments and where necessary prompt a more explicit exploration of these dimensions of a patient’s / carer’s life-experience, past and present, as they impact on their attitude to health change.
E. Use the evidence from the AHC responses:
i) at an initial assessment to determine the level of support which is appropriate to the health circumstances of the patient and to the level of vulnerability evident in the patient /carer. The three components set out in the NICE guidance defines appropriate levels of intervention based on levels of need.Fig.1. Three levels of need as indicators of varied levels of intervention
ii) use the AHC responses as a focus for the practitioner and the patient /carer to jointly, set goals for support or intervention. Where reactions to changes / deterioration in health are more complicated and counselling as a third level of intervention is indicated, a pluralistic approach is recommended, see Chapter 7 in, Machin. L. (2014) Working with Loss and Grief. London: Sage.
iii) re-use the AHC as part of the help process, to review the patient /carer changing perspectives on the patient’s health at points marked by deterioration in health or when significant treatment options are having to be considered.
iv) use the AHC as a tool in supervision. as a basis for the reflections on appropriate and effective support strategies.
v) use the AHC as a pre-bereavement assessment of carer needs. Effective support made possible by person-centred conversations with patients and their carers’ at the end of life will contribute to the possibilities for an uncomplicated bereavement experience.
National Institute of Clinical Excellence (NICE) (2004). Improving Supportive and Palliative Care for Adults with Cancer. London.