By Lis Dreijer Hammond, Aalborg University (DK), Christian Karlsen Hansen & Martin Lehmkuhl Kristensen, Rehabilitation Centre for Refugees, North Jutland Regional Health Services (DK) and Chalotte Glintborg, Aalborg University (DK)
When illness or major negative life events occur, life often does not return to what it was before. For people living with long-term conditions, the challenge is not simply managing symptoms but adjusting to a changed life. When this adjustment process is disrupted, it can contribute to anxiety, depression, poorer physical health outcomes, and increased use of healthcare services. Estimates of how well people adjust to long-term conditions vary widely, depending on how adjustment is measured. Poor adjustment shows estimates between 16.9 and 62%. For good adjustment the estimate ranges from 13 to 36,3%. Globally, more than 1 billion people live with long-term multimorbidity. If up to two-thirds experience adjustment difficulties, there is an urgent need to improve support for adjustment to long-term conditions.
Adjustment is not limited to adherence to medical advice, nor does it merely concern health behaviours. The Integrative Model of Adjustment to Continuous Challenges [formerly “to Chronic Conditions”] (IMACC) is a theory of the biopsychosocial adjustment process, as experienced by the person. IMACC was developed through a study on type 2 diabetes and later verified for applicability to adult-onset epilepsy. Using IMACC collaboratively may provide a window directly into the person’s adjustment process as described below.
Adjustment is a normal and lifelong process; when life changes, we change with it. However, negative life changes can be difficult to adjust to. IMACC stipulates that to make everyday life function as well as possible, it may be necessary to change thoughts and behaviours that are no longer helpful under the new conditions. Such changes are called adjustment tasks. Successful resolution of these leads to better adjustment, a more functional everyday life, and positive identity change. Adjustment difficulties may be caused by obstacles getting in the way of changing, which may stall the adjustment process and, over time, lead to poor adjustment, deterioration of mental and physical health, and negative identity changes.
How IMACC is structured
IMACC consists of three interacting levels:
Level 1: Personality and life-changes concern past personality, beliefs and behaviours. The focus is on aspects that may impact on the adjustment process, either as obstacles to the process or as strengths that may support adjustment. In addition, determining experiences occurring in relation to the negative life events causing the need to adjust, may also impact on the adjustment process, both negatively (e.g., health care incidents) and positively (e.g., support).
Level 2: Ongoing adjustment cycle consists of five areas with adjustment tasks. When facing a long-term health condition or disability, the person starts by Taking Stock. They process initial emotional reactions such as shock or anger while reflecting on what may need to change to make life function again. This involves developing motivation to adjust.
The person then moves into Learning, gaining knowledge about the condition and available options, as well as skills for self-management and coping. This typically involves developing new attitudes toward life and others. Their Surroundings play an important role. Family, work, health professionals, and the broader environment influence adjustment, as does the person’s perception of their surroundings and their own life roles.
As adjustment progresses, the person needs to engage in Letting Go, processing losses related to past functioning or future dreams and plans that are no longer feasible. Attitudes or behaviours, that no longer work in the new situation, may need to be relinquished. Over time, for each change the person may Accept and Integrate the new way of living, by integrating and maintaining new attitudes and behaviours in their daily life.
Importantly, for each issue that requires change, the person moves through the Ongoing adjustment cycle, meaning several areas may be active at the same time.
Level 3: Maintenance cycle shows what happens in challenging moments. It is a classic cognitive-behavioural maintenance cycle with one difference: The cognitions are characterised by a conflict between either Taking Stock or Learning (depending on where in the adjustment process the person has stalled), Letting Go and Surroundings. To illustrate, a (stereo-)typical example is a woman, who struggles to learn a greater focus on self-care, because she cannot let go of her role as the person cooking and cleaning out of fear of being a “bad mother” or a “bad wife”. Maintaining her close relationships (social surroundings) feels more essential than looking after herself (underlying attitude).
Practical recommendations
Identify a meaningful goal: Support reflection on which changes in the person’s daily life might make a positive difference (e.g. health behaviour change). Discuss how they can integrate this change in their daily routine. Being specific about the details (time, place, etc.) makes it easier to get started. Ask what it would mean for them to make this change – and what it might mean, if they do NOT change. Meaningful goals help motivation.
Work through the obstacles: Review attempts to implement the change and normalise any difficulties there might be. Discuss a recent attempt to change and listen out for the underlying values and attitudes (e.g. “I must help others before myself” or “I must finish a task before resting”).
Consider the role of others: Ask the person what impact they believe the change might have on close relationships. For instance, if a need to improve self-care means doing less for others, what do they think the consequences might be? What would it mean for their identity (e.g. change of life roles). What do they believe others might think, say or do?
Support negotiations of change: What might the person need to talk to others about? They might need to ask what it means to others (instead of relying on own assumptions). They might need to negotiate adjustments to daily routines or to improve their skills in communicating their needs (e.g. fluctuating pain levels – what can others expect they will be able to do today).
Improve basic body awareness: Support the person learning to understand bodily symptoms and sensations, what they mean and how to use them to guide self-care. Help them manage the stress involved in behaviour change and the impact of change on close relationships.
