Adaptation and coping

Adaptation is central to the general theory of rehabilitation. The Oxford English Dictionary [OED] describes its meaning in biology as “the process of change by which an organism or species becomes better suited to its environment.” which implies changes in the environment. However, it has many associated meanings, such as adjustment, assimilation, and accommodation (to the change). Many of these differences concern the perceived goal of adaptation and the value attached to that goal. For example, learning to cope with a lost function could be considered positive if there were no better alternatives or negative if there was the option of regaining the missing function. Thus, there are both positive and negative meanings. I will explain how the process of adapting relates to illness and rehabilitation. The literature on adaptation in illness is vast, and I cannot refer to every paper and book. I have compiled a list of references, not all used here, which you may download to start your exploration of the broader literature. The main content off this page is summarised below the Table of Contents.

Introduction

Adaptation, inheritance of characteristics, and natural selection are the three keys to the evolutionary process. Looking at it retrospectively, evolution has a purpose. This is teleology, “the explanation of phenomena in terms of the purpose they serve rather than of the cause.“ [OED] This purpose was also called teleonomy for some decades, but Max Dresow and Alan Love argue that the word and concept are redundant. Nevertheless, the concept of adaptation having a goal is worth preserving when considering a person who is ill.

To adapt is to fit in, to adjust to new circumstances. Adaptation is only sometimes successful in the long term. Many species have adapted to an environment that then disappears, and they become extinct. Someone whose job disappears, such as a coal miner, may adapt by training for a new job, such as selling vinyl records, only to find that all music is sold online twenty years later. Moreover, someone may adapt simply by accepting a situation which could be improved. Sometimes, there is a need to adjust constructively, for example, to retain an adequate income. This again raises the issue of adaptation having a purpose.

My suggested general rehabilitation theory has adaptation as its crucial building block, with rehabilitation facilitating it. This post will start by discussing the many meanings of adaptation in health and illness and then expand on its place in the theory, which was only touched on in my original paper.

Aspects of adaptation.

Paul Menzel and his international colleagues considered what adaptation to disability meant, particularly regarding the value attached to the adapted state when considering resource allocation. Their question was, if adaptation leaves someone with an average quality of life, should resources allocated to that condition be reduced?

They identified eight meanings, referred to as ‘major elements’. I will consider each in the order they used.

Cognitive denial.

This refers to a person not admitting the extent of their loss or suffering, which they attribute to a cognitive process. The process of acceptance and denial in people with chronic illnesses has been researched extensively. For example, Kerry Telford and her colleagues reviewed 60 papers published between 1989 and 2003. The ideas of Freud and Kubler-Ross significantly influence how adjustment to loss occurs, which, they argue, ignores the experiences people report and attaches labels which may be inappropriate and demean the person.

They prefer an interpretation based on what the person reports. They draw on a meta-synthesis of 292 qualitative studies by Barbara Patterson and say, “Rather than assisting people to accept their limitations and losses, healthcare professionals can seek to understand and support their unique perspective as a response to a particular socio-cultural and psychological situation.” Barbara Patterson focuses on how a person’s perspective on their chronic illness changes, for example, moving from focusing on being ill to paying attention to being well.

Thus, this adaptation aspect is relevant to rehabilitation because it sets the scene for active assistance from rehabilitation teams.

Suppressed recognition of complete health.

This is a variation of denial; the person stops realising what total health is like and what they could do if healthy. Paul Menzel et al. attribute this to a separate cognitive process. However, it seems minimally different from cognitive denial, and the same arguments apply.

It also begs the question, what is complete health? In my published article, I quote a philosopher with a progressive disability, Havi Carel, who suggests that if a disabled person achieves a physical, social, and psychological equilibrium, they might be considered healthy.

Skill enhancement.

This meaning is entirely concordant with rehabilitation’s purpose. The person who has lost or reduced skills in some domains develops their skills in other domains to continue the same activities and work towards the same goals.

This is one of the goals of any rehabilitation therapy. I am uncertain how often a person’s losses can be compensated for using other skills sufficiently well to continue all activities unchanged, but the principle is central to rehabilitation.

Activity adjustment.

This is the primary way that rehabilitation therapy facilitates adaptation. The person continues to aim for the same high-level goals, for example, as suggested by Maslow, but does so in a different way, using new or altered activities. For example, the person may use a wheelchair to go to the local pub to meet friends and participate in a pub quiz, whereas, before their injury, they might have walked.

Substantive goal adjustment.

Goal adjustment is recognised as a legitimate part of rehabilitation, with some research. Lesley Scobbie and colleagues reviewed publications between 2007-2018, finding 91 relevant articles. From their study data, they defined goal adjustment simply as “adjusting a goal to make it achievable.”

They identified at least 47 underlying theories! On further analysis, the suggested three were relevant to rehabilitation: a life-goal rehabilitation model, a model of the adaptation process, and a theory of community integration. (All were published in Clinical Rehabilitation.)

The association between goal adjustment, including goal disengagement and re-engagement strategies, and improvement in subjective well-being was positive in 79% of studies and negative in 5%. Many strategies were described. They conclude that, although the evidence suggests strategies and benefits, further research is needed to build on this foundation.

Roos Arends and colleagues studied “The role of goal management for successful adaptation to arthritis.” They analysed data from 305 patients and found that active goal management interventions were associated with a better outcome. They concluded, “Designing interventions that focus on the effective management of goals may help people to adapt to polyarthritis.”

Thus, one may conclude that adjusting goals is a legitimate and influential part of adaptation that rehabilitation may facilitate.

Altered conception of health.

This is closely associated with the suppressed recognition of complete health. Menzel et al. state that total health usually equates to a biomedical and statistical normative standard. They also recognise a humanistic conception, where health is equated to the capacity “to adapt positively to the problems of life.” These may be personal, social, physical or occupational challenges. They accept this is a reasonable interpretation of health for an individual; their concern is with the consequences for resource allocation.

Lowered expectations.

Heightened stoicism.

This is similar to lowering expectations; the person achieves as much satisfaction from completing a lower level than they want but keeps the level they wish to attain for their goal. They appreciate that this is similar to lowering expectations by saying, “… from a stoic perspective, even lowered expectations can be defended as realistic, rational, and admirable, and perhaps even a central element in human maturity and wisdom.”

Comment on the typology

Menzel et al. were concerned with using a person’s reported quality of life to allocate health resources, arguing that conditions where people adapt to achieve a good quality of life despite having an ‘objectively’ lower health, might be disadvantaged. This may have influenced their classification.

Their paper discounts or devalues some adaptations without any explicit principles underlying the valuation. For example, why are lowered expectations considered the least admirable adaptation? It also discounts a person’s reported quality of life, preferring a biomedical assessment. Further, there is good evidence of ‘response-shift recalibration’ after developing a chronic illness. Some of the distinctions are minor, for example, the distinction between goal adjustment and lowered expectations.

Psychological adaptation.

The analysis by Menzel et al. strikingly omits any mention of psychological adaptation, undoubtedly an essential component of the quality of life they were concerned with.

One term for psychological adaptation is coping, which has two meanings. The first is descriptive. It means tolerating something, a relatively passive acceptance of an unpleasant situation. For example, someone might be coping with a demanding boss when the alternative is to lose the job. This is a negative connotation.

The second, more positive meaning refers to a process, the psychological adaptation to change.

In 2012, I was involved in a review by Ingrid Brands and colleagues discussing “The adaptation process following acute onset disability: …” where we reviewed adaptation and coping, defined the similarities and differences, and developed a theory.

Our definitions were:

Adaptation refers to “the general and overall process of change in emotions, actions and thoughts that arise from the changes and limitations imposed by the injury in any and all domains.”
Coping refers to a more restricted concept, “the way people respond to the problems and emotional turmoil associated with brain injury.”

Coping is mainly concerned with the emotional response to change.

The theory suggests that a person will review the discrepancy between their goals and achievements and, usually, adjust the goals to maintain a discrepancy that motivates without engendering a sense of inevitable failure and hopelessness. This applies to short- and long-term goals, with the performance in the short term influencing long-term goal adjustment. In practice, the person must balance “… tenacious goal pursuit and flexible goal adjustment.”

We also suggested that the process was influenced by the person’s self-awareness, recognition of performance level, and self-efficacy. Other factors, such as family and friends’ support and optimism, affect coping.

Although the theory was developed for people with a recently acquired brain injury, its central principles should apply more generally.

Another type of psychological adaptation is often referred to as post-traumatic growth. This term implies it only follows trauma, but unless one labels all illness trauma, this is not true. For example, Yvonne Leung and colleagues studied patients with chronic cardiac disease. They did not categorise patients but looked at the correlation between the extent of growth and various factors. In a similar correlational study, Stanislawa Byra collected data from patients who had a spinal cord injury and found that beliefs about the world and the transformation of values were associated with post-traumatic growth.

Shoshannah Williams and Carolyn Murray studied occupational adaptation after stroke, another term describing psychological adjustment. In their qualitative study, they identified various ways people reacted. They developed a model of the process involving negative feelings, coping strategies, and personal qualities.

Maladaptation

Professor Stefano Negrini, in his admirable review of the first draft of my paper, raised the issue of maladaptation, which I had mentioned briefly. A detailed discussion would have lengthened the paper unacceptably, and I removed all references. Nevertheless, it is relevant, and I will consider it here.

Maladaptation is “failure to adjust adequately or appropriately to the environment or situation.” [OED] This description judges adaptation on two criteria. The first is adequacy; has the process achieved the best outcome possible? This can be evaluated without applying any values. Though no one can be certain about the possible best outcome, the limits of doubt are knowable and not subject to any moral judgment.

In contrast, appropriately implies a moral judgement, and the prefix emphasises this aspect. Mal- carries implications of unpleasantness, being improper, faulty, or not complying with some rule or expectation.

The usual initial motivation of an ill person is a natural wish to adapt as fully as possible, preferably to a previous or normative expected state. The person will strive to undertake activities and continue to work towards satisfying their self-identified life goals. Another factor that might moderate this motivation is the perceived advantages of being ill. Illness might enable an escape from an intractable problem, lead to a less stressful life, or provide more security with a fixed income. Third, the societal rules and expectations might make successful adaptation too stressful or uncertain to encourage persevering.

For example, a return to work might require adaptations, and there may be uncertainty about its success. However, returning to work and failing some months later may mean the person can no longer receive a sickness benefit. If so, they may choose not to return.

The third significant type of maladaptation is when the person tries their utmost but fails because they have not been given correct information or guided through the process. For example, a person may believe that they should not exercise after a myocardial infarction in case they cause another attack or be advised not to become pregnant because it might exacerbate their multiple sclerosis.

In summary, one may classify adaptation as:

Optimal, when the person achieves the maximum capabilities possible given their losses;
Sub-optimal, due to:
- Being given incorrect advice or information
- Having or developing erroneous beliefs
- Absence of expert and accurate information and advice
- Absence of necessary assistance, support, equipment, and adaptations
- The unintended consequences of social policies that make attempting to do better unattractive (risky, stressful, etc) for the person
- A choice by the person not to achieve their potential, even though they have been given advice.

It would be better to avoid the word maladaptation because it implies a value judgement by the person using it. The choice made might be rational and correct for that person. In most cases, one should not judge. Instead, one should explore the reasons, and if reversible reasons for the choice are found, one could provide better information, advice, support, or assistance.

Information and adaptation

People will change their behaviours and set goals using their understanding of the situation, its likely future, and actions to optimise their outcome. For minor, commonplace, or short-term problems, their experience and the experience of others known to them will often give them sufficient accurate information to adapt satisfactorily. However, many people may have faulty beliefs or be given incorrect information.

Most people will not have or gain easy access to good, helpful information and advice. Worryingly, many healthcare professionals need more knowledge and understanding of the longer-term consequences of many conditions and what can be done. They may admit not knowing, but often, they give sub-optimal information, advice, and sometimes entirely incorrect information.

Rehabilitation experts have the knowledge and skills to provide the best explanation, information, and advice. Crucially, they also know the limits of their knowledge and will, or should, always mention this to the patient and others, giving realistic estimates about their uncertainty. To provide this information, the rehabilitation service must first collect relevant data by undertaking sufficient assessment for formulation.

A vital part of their role is to provide a prognosis and plan of action needed; just explaining what has happened and why matters are as they are is insufficient and will benefit the patient little, if at all.

To achieve this will require time. In straightforward cases, one team member might have sufficient expertise to accomplish everything needed within an hour. More usually, several team members and more time are necessary.

The effect of providing an explanation, a prognosis, and a plan can be considerable. They prevent the person from adapting sub-optimally secondary to faulty understanding or beliefs. They enable the person and their family and others to progress with confidence. In many cases, little extra is needed from the rehabilitation service except to be readily available if the person needs help. The rehabilitation input can be considered catalytic.

A catalyst.

“a substance that increases the rate of a chemical reaction without itself undergoing any permanent chemical change.”

“a person or thing that precipitates an event:”

Oxford English Dictionary [OED]

This rehabilitation input acts as a catalyst because it facilitates the person’s adaptation to their illness without requiring further rehabilitation input.

Goals

Providing a rehabilitation plan usually involves setting goals. Many people set their own goals, and, as described in the theory, everyone has needs which motivate them, as defined by Maslow. The overview of adaptation above has highlighted the importance of helping someone to set, monitor, and adjust their goals. Rehabilitation plays a vital role because team members have expertise in judging prognosis and what goals are appropriate.

Short and medium-term goals often involve functional activities such as getting dressed, cooking a meal, or taking a child to a local park. Rehabilitation teams generally feel comfortable discussing these because the team can estimate an appropriate target and measure progress.

One major challenge, often ducked, is considering psychological goals around the emotional state (coping) and style of social interaction; these are difficult to measure, and there needs to be evidence to guide the team on an appropriate target level. However, as is often stressed, it is better to set goals in a critical domain that cannot be measured than a measurable goal in a less important domain.

Discussing long-term goals is an even more significant challenge. Raising the topic is difficult as the issues are very personal, and the discussion is less controllable than discussing functional activities. One way is to consider Maslow’s five areas of need and use them to start the conversation. Ensuring that the person’s long-term aspirations are reasonable may avoid later difficulties and help set medium-term goals.

Helping the person with goal adjustment is a vital part of these efforts. There needs to be more research on how to undertake this.

One unresolved issue is to decide how challenging a goal should be. If a goal is not sufficiently challenging, the person may not be motivated, while, at the same time, if it is perceived to be impossible, the person will give up trying. There needs to be more evidence to guide a clinician.

In summary, the rehabilitation team should consider:

Are existing patient goals either set too low or too high?
Have important medium-term goals been overlooked, especially in areas that challenge team members?
Should we help the person adjust their goals?
Have we discussed the person’s long-term aspirations, considering Maslow’s five needs?

This aspect of rehabilitation is mainly catalytic, setting the person on the right track. However, helping someone to adjust their goals is an assistive activity.

Conclusion

Adaptation is not a passive process where the person accepts and comes to terms with their illness. It is an active process that may sometimes involve significant changes in the person’s persona, changing their interests, roles, and societal position. It is closely related to coping, which can be considered the process of adapting psychologically. The role of rehabilitation will be discussed separately, but two vital roles are discussed here: providing accurate information, explaining what has happened and the prognosis, and giving a plan; and helping in the goal adjustment process, ensuring goals that are sufficiently motivating but do not seem unattainable to the person.

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