Introduction 📖
"It's not fair ❌" 12-year-old Joe 👦 complained. "Why can't I eat the stuff I like 🍕🍰? Other kids can 👫. Why do I have to check my blood 🩸 everyday and take shots 💉? Nobody else has to do that 🤷♂️," He voiced these complaints 😤 as he left the emergency room 🚑 after suffering severe stomach cramps 😖 because he was not adhering to his medical regimen 💊❌. Hospital tests 🏥 recently determined that Joe has diabetes 🩺, and he was not adjusting well 😔 to the regimen his physician 👨⚕️ instructed him to follow.
His parents 👨👩👦 tried to explain that not following the regimen ❌ could have serious health consequences ⚠️, but he thought 💭, "I'll do some of the things they say I should do ✅, and that'll be enough ✔️. I feel fine 😊—so those problems won't happen to me 🙅♂️." When his noncompliance 🚫 led to his being rushed to the hospital 🏥 with severe abdominal pain 😣 and difficulty breathing 😮💨, he finally believed the warnings ⚠️ he received, and he began to adhere closely ✅ to his regimen 💊.
Different individuals react differently 🔄 to developing a chronic illness 🏥. Their reactions depend on many factors 📊, such as their coping skills 💪 and personalities 🧠, the social support 👥 they have, the nature and consequences ⚖️ of their illnesses 🏥, and the impact of the illnesses on their daily functioning 📅. At the very least, having a chronic condition ⏳ entails frequent impositions 🚧 on the patients and their families 👨👩👧👦. Chronically ill people 🤒 may suffer periodic episodes 🔄 of feeling poorly 😞 and need to have regular medical checkups 🏥, restrict their diets 🥗 or other aspects of their life styles 🏃♂️, or administer daily treatment 💉, for instance. Many chronic conditions ⏳ entail more than just impositions 🚧— they produce frequent pain 🤕 or lead to disability ♿ or even death 💀.
This and the next coming lectures 📚 focus mainly on tertiary prevention 🛡️ for chronic illness ⏳— to retard its progression 📉, prevent disability ♿, and rehabilitate the person 🏃♂️, physically 💪 and psychologically 🧠. We will examine how people react 😨 to and cope with chronic health problems 💪 and what can be done to help these people cope effectively ✅.
The present lecture concentrates on health problems 🏥 that are less likely to result in death 💀 but often lead to disability ♿. We will begin by discussing people's reactions 😨 to having a chronic condition ⏳, then we will examine the experiences 📖 and needs 🎯 of individuals living with various health problems 🤒, and then we will consider psychosocial interventions 🧠 to enhance patients' long-term adaptation 🔄 to their conditions.
Our discussion in these lectures 📚 will address many questions ❓ that are of great concern 😟 to patients 🤒, to their families 👨👩👧👦 and friends 👥 and probably to you 👤. How do individuals react 🤔 after their initial shock 😱 of learning that they have a chronic illness ⏳? What kinds of health problems 🏥 usually involve the most difficult adjustments 😔 for people? How do patients' chronic conditions 🏥 impact on their families 👨👩👧👦? What can families 👥, friends 🤝, and therapists 👨⚕️ do to help chronically ill people 🤒 adapt effectively ✅ to their conditions ⏳?
Adjusting to a Chronic Illness 🔄🏥
"I felt like I'd been hit in the stomach by a sledgehammer 🔨"—this is how many patients 🤒 describe their first reaction 😱 upon learning that they have a disabling ♿ or life-threatening illness 💀. Questions ❓ without immediate answers flash through their minds 🧠: Is the diagnosis right ✅ and, if so, what can we do about it 🤔? Will I be disabled ♿, disfigured 😰, or in pain 🤕? Will I die 💀? How soon will these consequences happen ⏰? What will happen to my family 👨👩👧👦? Do I have adequate medical 🏥 and life insurance 💰? Learning of a chronic health problem ⏳ usually comes as a great shock 😱, and this is often the first reaction 💥 individuals experience when the physician 👨⚕️ tells them the diagnosis 📋.
Initial Reactions on Having a Chronic Condition 😱🏥
By observing patients 👀 in rehabilitation 🏥 and health settings, Franklin Shontz 👨🔬 (1975) has described a sequence of reactions 🔄 people tend to exhibit following the diagnosis 📋 of a serious illness 🏥. This sequence of reactions is:
1. Shock 😱⚡
Shock 😱—an emergency response 🚨, marked by three characteristics 3️⃣: (a) being stunned 😵 or bewildered 🤯, (b) behaving in an automatic fashion 🤖, and (c) feeling detached 🚶♂️ from the situation, that is, feeling like being an observer 👀 rather than a participant 🙅♂️ in the events that occur. The shock 😱 may last only a short while ⏱️ or may continue for weeks 📆, occurs to some degree in any crisis situation 🚨 people experience, and it is likely to be most pronounced 📢 when the crisis comes without warning ⚠️❌.
2. Encounter 😰🌊
Encounter 😰—a phase that is marked by disorganized thinking 🧠🌀 and feelings of loss 😔, grief 😢, helplessness 😞, despair 😭, and being overwhelmed 🌊 by reality 🌍.
3. Retreat 🚪🏃♂️
Retreat 🚪—a phase in which people tend to use avoidance strategies 🙈, such as denying ❌ either the existence of the health problem 🏥 or its implications 📊. But then reality 🌍 begins to intrude 🚪: the symptoms remain 🔄 or get worse 📈, additional diagnoses 📋 confirm the original one ✅, and it becomes clear 💡 that adjustments need to be made 🔧. Using retreat 🚪 as a "base of operation 🏠," patients tend to contact reality 🌍 a little at a time ⏳ until they reach some form of adjustment 🔄 to the health problem 🏥 and its implications 📊.
Do All Individuals React the Same Way? 🤔
Do all individuals react in the ways Shontz 👨🔬 has described when they are faced with such crises 🚨 as being diagnosed with a serious illness 🏥? No ❌, but probably most do ✅. For instance, when faced with a crisis 🚨, most people react with shock 😱 initially, but other individuals may be "cool 😎 and collected 🧘♂️," while others may be "paralyzed 🥶" with anxiety 😰 or may become hysterical 😭." Similarly, although many people with serious illnesses 🏥 feel extremely helpless 😞 and overwhelmed 🌊 after the initial shock 😱, others do not 🙅♂️. And many patients do not rely heavily 🚫 on avoidance strategies 🙈 to cope with the stress 😰 caused by having a health problem 🏥.
People who use denial 🙈 and other avoidance strategies 🚫 do so to control their emotional responses 😢 to a stressor 😰, especially when they believe 💭 they can do nothing ❌ to change the situation 🔄. But the usefulness ✅ of this approach has limits ⚠️. Although using avoidance strategies 🙈 often provides psychological benefits 🧠 early in the process 🏁 of coping with health problems 🏥, excessive avoidance 🚫📈 can soon become maladaptive ❌ to patients' physical 💪 and psychological well-being 🧠.
For example, when hospitalized people 🏥 receive information 📚 about their conditions 🏥 and future risk factors ⚠️, those individuals who use avoidance strategies heavily 🙈📈, gain less information 📉 about their conditions than those who use these strategies to a lesser degree 📊. Patients often need to make major decisions 🤔 about their immediate treatment 💊. How can they make these decisions rationally 🧠 if they fail to take in the information 📚 that the practitioners 👨⚕️ present to them? Later, they may need to take action 🏃♂️ to promote their recovery 🔄, reduce the likelihood 📉 of future health problems ⚠️, and adjust their lifestyles 🏡, social relationships 👥, and means of employment 💼. What factors influence 🎯 how people cope with their health problems 🏥? The next section provides some answers 💡 to this question ❓.
Influences on Coping with Health Crisis 🎯😰
Healthy people 😊 tend to take their health 💪 for granted. They expect to be able to carry out their daily activities 📅 and social roles 👥 from one day to the next 🔄 without substantial disruptions 🚧 due to illness 🤒. When a serious illness 🏥 or injury 🤕 occurs, their everyday life activities 📅 are disrupted 🚧. Regardless of whether the condition is temporary ⏱️ or chronic ⏳, the first phases in coping 💪 with it are similar 🔄. But there is an important difference ⚖️: in contrast to the short-term disruptions ⏱️ that temporary illnesses 🤒 cause, chronic health problems ⏳ usually require that patients 🤒 and their families 👨👩👧👦 make permanent ♾️ behavioral 🧍♂️, social 👥, and emotional 😢 adjustments 🔄.
When people learn that they have a serious chronic illness ⏳, the diagnosis 📋 quickly changes 🔄 the way they view 👀 themselves and their lives 🌍. The plans 📝 they had for tomorrow 📅 and for the next days, weeks, and year 📆 may be affected ⚠️. Major plans 🎯 and minor ones 📌 may change 🔄: Did they plan to go on a trip 🧳 this weekend 📅? They may change their minds 🔄 now. Did they plan to complete a college education 🎓, or enter a specific career field 💼, or get married 💍 and have children 👶, or move to a new community 🏘️ when they retire 👴? Some of these ideas 💡 for the future 🔮 may evaporate 💨 after the diagnosis 📋.
As psychologists 👨🔬 Richard Lazarus and Cohen have noted, "because the idea of being healthy 💪, able ✅ and having a normal physique 🧍♂️ is central 🎯 to most people's image 🖼️ and evaluation ⚖️, becoming ill 🤒 can be a shock 😱 to a person's sense of security 🛡️ and to his or her self-image 🪞. Not only does it threaten ⚠️ the customary view of oneself 👤, but it further underscores that one is indeed vulnerable 😰; and that one's life may be changed 🔄 in major respects. As a result adjustment 🔄 to an illness 🏥 or injury 🤕 which is life-threatening 💀 or potentially disabling ♿ may require considerable coping effort 💪." Potentially disabling ♿ or life-threatening conditions 💀 leave patients 🤒 and their families 👨👩👧👦 with many uncertainties ❓, Often no one ❌ can tell for certain ✅ exactly what the course of the illness 🏥 will be 🔮.
The Crisis Theory 🧠📊
Why do some individuals cope differently 🔄 from others after learning they have a chronic health problem ⏳? Rudolf Moos 👨🔬 (1986) has proposed the crisis theory 🧠, which describes factors 📊 that influence how people adjust 🔄 during a crisis 🚨, such as having an illness 🏥.
The diagram 📊 presents his conceptual model 🧠, showing that the outcome 🎯 of the crisis 🚨— or the adjustment 🔄 the person makes—depends on the coping process 💪, which depends on three contributing influences 3️⃣: illness-related factors 🏥, background and personal factors 👤, and physical and social environmental factors 🌍. We will look at these contributing influences 🔍, and then see how they affect the coping process 💪 the patient uses.
a) Illness-Related Factors 🏥📊
Some health problems 🏥 present a greater threat ⚠️ to the person than others do—they may be more disabling ♿, disfiguring 😰, painful 🤕, or life-threatening 💀, for example. As you might expect 🤔, the greater the threats ⚠️ patients perceive 👀 for any of these factors, the more difficulty 😔 they are likely to have coping 💪 with their conditions.
Adjusting to being disfigured 😰 can be extremely difficult 😔, particularly when it involves the person's face 👤. Many individuals whose faces are badly scarred 😰 withdraw 🚪 from social encounters 👥, sometimes completely 🚫. Often people 👥 who see the disfigurement 😰 react awkwardly 😬, and some show feelings of revulsion 🤢. Even children 👶 react more negatively ❌ to people's facial disfigurements 😰 than to injuries 🤕 to other parts of the body 🦴, such as when people are crippled ♿ or missing a limb 🦾.
Patients also have difficulty 😔 coping with illness-related factors 🏥 that involve annoying 😤 or embarrassing 😳 changes in bodily functioning 🧍♂️ or that draw attention 👀 to their conditions 🏥. People with some illnesses 🤒, for instance, may need artificial devices 🔧 for excreting fecal 💩 or urinary wastes 💦. These devices may be noticeable 👀 either visibly 👁️ or by their odors 👃, and many patients have exaggerated impressions 💭 of the social impact 👥 such devices have.
Other chronically ill people ⏳ must treat their conditions with ointments 🧴 that may have odors 👃 or equipment 🔧 that is visible 👁️ or makes noise 🔊. Still others may experience periodic seizures 😵 or muscle spasms 💪 that can be embarrassing 😳. Many people with chronic illnesses ⏳ feel self-conscious 😳 about their health problems 🏥—or even stigmatized 🚫 by them—and want to hide 🙈 them from others 👥.
Various other aspects of treatment regimens 💊 can make adjustment 🔄 very difficult 😔, too. Some treatments are painful 🤕 or involve medications 💊 that produce serious side effects ⚠️—either by leading to additional health problems 🏥 or by interfering with the patient's daily functioning 📅, such as by making the person immobile 🚶♂️❌ or drowsy 😴. Other regimens 💊 may have treatment schedules ⏰ and time commitments ⏳ that make it difficult 😔 for the person to find or hold a job 💼. Some regimens 💊 require patients 🤒 and their families 👨👩👧👦 to make substantial changes 🔄 in their lifestyles 🏡, which they might resent 😠 and fail to carry out ❌. Each of these factors can impair 📉 people's adjustment 🔄 to chronic health problems ⏳.
b) Background and Personal Factors 👤🧠
People who cope well 💪 with chronic health problems ⏳ have the psychological 🧠 and behavioral 🧍♂️ resources to resolve the chronicity ⏳ or 'long-termness' of the situation, balance hope 🌟 against despair 😔 and find purpose 🎯 and quality ✨ in life 🌍. Often, these people have hardy 💪 or resilient 🛡️ personalities that allow them to see a good side 😊 in difficult situations 😔.
People with chronic diseases ⏳ who are resilient 🛡️ can often find purpose 🎯 and quality ✨ in their lives 🌍, maintain their self-esteem 💪, and resist feeling helpless 😞 and hopeless 😔.
The ways individuals cope 💪 with chronic health problems ⏳ also depend on many other background and personal factors 📊, such as their age 👶👴, gender ♂️♀️, social class 💰, philosophical 💭 or religious commitments 🙏, emotional maturity 🧠 and self-esteem 💪.
With respect to gender differences ⚖️, for instance, men ♂️ are more likely than women ♀️ to be "threatened ⚠️ by the decreases 📉 in ambition 🎯, vigor 💪, and physical prowess 🏃♂️ that often result from serious illness 🏥 because, by comparison with women ♀️, they are confident 😊 in the stability of their physical abilities 💪 and bodily functioning 🧍♂️.
Having a chronic illness ⏳ often means that the individual must take on a dependent 🤝 and passive 🛋️ role for a long period of time ⏳. For men ♂️, this can be especially difficult 😔 since it is inconsistent ❌ with the assertive 💪 and independent 🦅 roles they generally occupy in most societies 🌍 of the world 🌎.
The timing ⏰ of a health problem 🏥 in the person's life span 👶👴 also affects the impact 💥 on him or her. In the case of very young children 👶, their limited cognitive abilities 🧠 prevent them from understanding fully ❌ the nature of their illnesses 🏥, the treatment regimens 💊 they must follow, and the long-term implications ⏳ of their conditions. Their concerns 😟 are likely to focus on any restrictions 🚧 that are imposed on their lifestyles 🏡 and activities 🎮, the frightening 😨 medical procedures 🏥 they experience, and possible separations 👋 from their parents 👨👩👦. As children get older 📈 and their comprehension 🧠 improves ✅, they may be able to participate 🙋♂️ in making some decisions 🤔 about their treatment 💊.
c) Physical and Social Environmental Factors 🌍👥
Many physical 🏢 and social 👥 features of our environments 🌍 can affect the way we adjust 🔄 to chronic health problems ⏳. The physical aspects 🏢 of a hospital environment 🏥 for instance, are usually very dull 😑 and confining 🚪 for patients 🤒, thereby depressing 😔 their general morale 📉 and mood 😞. For some individuals, the home environment 🏡 may not be much better ❌. Many patients 🤒 have difficulty 😔 getting around their houses 🏠 or performing self-help tasks 🧹; such as buttoning clothes 👕 or opening food containers 🥫, and lack special equipment 🔧 or tools 🛠️ that can help them do these tasks and be more self-sufficient 💪. These people's adjustment 🔄 to their health problems 🏥 can be impaired 📉 as long as these situations persist ⏳.
The patient's social environment 👥 functions as a system 🔄, with the behavior 🧍♂️ of each person affecting the others 🔗. The presence of social support 🤝, for example, generally helps ✅ patients 🤒 and their families 👨👩👧👦 and friends 👥 cope with their illnesses 🏥. Individuals who live alone 🚶♂️ and have few friends 👥❌ or who have poor relationships 💔 with the people they live with 🏡 tend to adjust poorly 📉 to chronic health conditions ⏳. But it is also true that sometimes people 👥 in a patient's social network 🌐 may undermine ⚠️ effective coping 💪 by providing bad examples 🚫 or poor advice 💭❌. The degree to which each member of the social system 👥 adjusts 🔄 in constructive ways ✅ to the illness 🏥 affects the adjustment 🔄 of the others 🔗.
The primary source 🎯 of social support 🤝 for children 👶 and most adults 🧑 who are ill 🤒 typically comes from their immediate families 👨👩👧👦. People in old age 👴 whose spouses 👵 are either deceased 💀 or unable ❌ to help are likely to receive support 🤝 mainly from their children 👨👩👧, but also from siblings 👫, friends 👥, and neighbors 🏘️. At almost any age 👶👴, patients 🤒 may join support groups 👥 for people with specific medical problems 🏥. These groups can provide informational 📚 and emotional support 🤝.
As the above given diagram 📊 depicts, crisis theory's three contributing influences 3️⃣ are interrelated 🔗 and can modify each other 🔄. The patient's social class 💰 or cultural background 🌍, for instance, may affect his or her self-consciousness 😳 about or access to special devices 🔧 and equipment 🛠️ to promote self-sufficiency 💪. These contributing factors 📊 combine to influence 🎯 the coping process 💪 the person uses to deal with the crisis 🚨.
Summary 📋
We will talk about the coping process 💪 in adjusting to chronic illnesses ⏳ in our next lecture 📚. We will also talk about the different chronic illnesses 🏥 and their biopsychosocial impacts 🧠💪 on patients 🤒.