CHAPTER 18 THE DEVELOPMENTAL CHALLENGES OF

CHRONIC ILLNESS: HELPING PATIENTS AND FAMILIES COPE

◦Families are also the primary sources of emotional and social support: the ones with whom to share the frustrations, discouragements, and despair of living with chronic illness.

◦This chapter will present a comprehensive psychosocial approach to working with families with chronic physical illness, by establishing a partnership with the families and supporting them as co-providers of care.

◦Chronic illness affects all aspects of family life. Old and familiar patterns of family life are changed forever◦Primary care clinicians can support families by discussing this balance, the stresses involved, and possible solutions to facilitate management of multiple responsibilities and care. Clinicians can also monitor families to recognize when imbalance occurs, such that the needs of the ill person, the caregivers, or other family members are not being met

Case study◦Jim Prusky was a 33-year-old machinist of Russian descent. He had not felt well since his mid-twenties, but it was not until age 32 and he had some vision loss in one eye that the diagnosis of multiple sclerosis was made. ◦His primary care physician initially diagnosed his leg weakness and gait disturbance as a herniated lumbar disc. He and his 30-year-old wife, Harriet, had undergone sex therapy for his erectile dysfunction. He and his 30-year-old wife, Harriet, had undergone sex therapy for his erectile dysfunction. ◦Their 4- and 6-year-old boys did not understand what was happening to their father, who no longer wrestled with them after work or carried them around on his shoulders.

◦he gradually became more disabled and had to quit his job.Harriet returned to work as a librarian, and Jim cared for the children after school.◦Jim was self-conscious about using a walker in public and stopped going out.◦Harriet felt burdened by all of her responsibilities. She began developing migraine headaches.

◦There are unfortunately no individual personality factors or family coping experiences that easily predict how people will cope. Each patient and family requires a careful assessment.

◦Assessment usually requires convening the family, perhaps around the initial diagnosis, or during an acute initial hospitalization.

◦Family meetings allow opportunities for education, as well as assessment about the psychosocial stresses of the particular illness, and the family’s experience, beliefs, stressors, and strengths.

Family Assessment

◦Illness Characteristics◦Family Developmental Stage◦Family Health Beliefs◦Multigenerational Patterns of Coping with Illness

Illness Characteristics1. Onset: Did the illness begin suddenly or gradually?

Acute onset (e.g., strokes or spinal cord injuries) require rapid mobilization of resources and put

enormous acute stress

Gradual onset (e.g., lupus or arthritis) allow families more time to adapt, but may create great uncertainty and anxiety.

2. Course: Is the illness progressive, constant, or relapsing?

◦slowly progressive diseases (e.g., COPD or AIDS) The patient has gradually increasing needs for assistance, with corresponding increases in family role changes.

◦constant course illnesses (e.g., strokes or amputations) in which the family learns to cope with a stable change.

◦relapsing illnesses (e.g., hemophilia or asthma) in which families shift back and forth from crisis orientation to chronic adaptation. These illnesses demand the most flexibility.

3. Prognosis: rapidly fatal, shorten lifespan, a risk of sudden death?

Fatal illnesses (e.g., amyotrophic lateral sclerosis or terminal cancer) require that the family cope with impending death.

Illnesses with a risk of sudden death (e.g., coronary artery disease) add an additional stress of unpredictability and constant vigilance.

4. Disability: are physical or mental limitations?

◦A physically disabling illness in a man who works as a laborer will be much more difficult for both the patient and family than a similar disability in a school teacher.◦Loss of cognitive abilities (e.g., in dementia or some strokes) is often one of the most difficult burdens for families.

Family Developmental Stage◦The Family Assessment can assess and educate families by helping families think about how illness stressors are related to their family life cycle.

1. What is the current stage of the family life cycle?The impact of a parent’s serious illness will similarly be very different if the children are very young, adolescent, or adult.

2. How are family developmental tasks impacted by the illness?◦centripetal phase (e.g., severe childhood illness) overinvolvement may exacerbate the illness.◦centrifugal period (e.g., adolescence). the care needed for the illness is in contrast to the spontaneity desired by adolescents.

Family Health Beliefs1. What does each family member think caused the illness?

◦Health beliefs usually reflect a combination of knowledge about disease +personal views of health and illness+ religious+cultural beliefs.

Some common beliefs• Fate or bad luck• Blame for inadequate self-care (e.g., smoking, lack of exercise)• Blame for past misdeeds (e.g., an illegitimate birth, divorce)• Blaming other family members (e.g., “Your drinking made me ill,” or,

“I get chest pain whenever we fight”)• Genetics (e.g., “Cancer runs in our family”)• Medical maltreatment (e.g., “I got lung cancer after my endoscopy”). • Religion (e.g., “It’s God’s will”).

2. What do family members believe they or others can do to improve the patient’s health?◦A family’s sense of control about an illness may be quite different than their beliefs

3. How do family members believe that the clinician can be helpful?Some families will expect the clinician to be responsible for illness care and even blame the clinician when the illness is diagnosed or worsens.

◦After his diagnosis, Jim read extensively about MS, especially its etiology and treatment. He became especially concerned about whether he had been exposed to heavy metals in his job. When a co-worker also developed MS, he solicited Dr. K.’s help in getting an occupational health expert to study their plant. ◦Harriet became interested in dietary treatments for MS. Jim tried a gluten-free diet for 6 months. Although it was time consuming, expensive, and not always very tasty, the couple felt that at least they were doing something to try to get better. Although Dr. K. informed them that there was no solid evidence that such a diet would help, he told them it could do no harm and was worth a try.

Multigenerational Patterns of Coping with Illness◦often passed down from one generation to another. There may be family myths, expectation.

◦This information can be elicited by obtaining a family genogram.

◦Ask about illnesses in the family going back at least three generations, and some brief ideas about how different family members coped. Look for repeating patterns (e.g., denial of the illness, over- or under-functioning of the ill person)

◦The Pruskys’ genogram revealed little information about Jim’s family history. His father and mother had been hard-working people who died of “natural causes” in their sixties and seventies. Jim’s father was nearing retirement, and his mother was healthy.◦ Harriet’s maternal grandfather had suffered a severe stroke in his early thirties and her grandmother was his caretaker for more than 20 years. Harriet’s mother, Emily, had an excessively close relationship with her mother, and only left home and married after her father died. Harriet feared that Jim would become similarly dependent upon her, and she did not want to become a martyr like her grandmother and mother. She also worried about the impact of Jim’s illness on their children’s development.

Other Stress and Demands on the Family◦A chronic illness is a major stress on families, but families commonly face numerous stresses simultaneously. Additional stressful life events will influence the family’s ability to cope with the chronic illness.

◦specific stressors, including: recent deaths, hospitalizations, other serious illness marital distress or recent divorce financial or work problems, especially unemployment

◦Even positive life events or normal life cycle changes can be quite stressful, including: ◦• a new baby ◦• a recent marriage ◦• a job promotion.

Family Strengths and Supports◦The process of discussing strengths also reinforces a family’s sense of competence and hope

1.What are the family’s strengths and sources of support? include people, patterns of coping, material, and spiritual support. Who and what does the family turn to for support? Does the family feel pride in its ability to solve problems and access resources?

2. What has helped the family cope with crises in the past? Reviewing past crises helps identify what kinds of coping strategies have been used before. It can remind families of what they can do with this new crisis

3. How adaptable is the family to change? Has the family been able to make the necessary changes in role functioning with this illness? Can they think of other changes that they may need for the near future?

4. Does the family accept outsiders, especially healthcare providers, into the family to help?◦it may be the result of a previous experience with the healthcare system

Dr. K. met with the Pruskys every 3 or 4 months to review Jim’s medical condition and see how the family was doing.Dr. K. had the family list and discuss their strengths. These strengths were: • a loving and caring marital relationship • equal sharing of family responsibilities • flexibility in family roles • a small group of close friends • a supportive extended family, many of whom lived in the area • a good working relationship with health care professionals. Dr. K. encouraged them to draw upon these strengths and support when they developed difficulties.

Helping Families Cope with Chronic Illness◦Key elements of this approach are support and education.◦ Psychological and social support is a significant benefit of the family–clinician relationship .◦Supportive relationships provide empathy, an opportunity to share feelings, and an assessment of how the family is coping, including referrals, if necessary, to mental health professionals.

Provide Education and Help with Problem Solving◦Clinicians should be an experts on the illness, and partners in the treatment process.

◦The clinician can instead point to sources of reliable information, including other specialists, readings, Web sites, classes, or consumer groups.

◦Knowing that some behaviors may be characteristics of the illness may help families respond in more empathic and helpful ways.

Help Remove Blame, and Accept Unacceptable Feelings◦Patients and family members go through stages of dealing with chronic illness that are often similar to those dealing with death:

shock, denial, anger, bargaining, grief, and acceptance

Each person, however, may be at different stages in dealing with the illness. which can create conflicts.

◦For the Pruskys, Harriet’s efforts to get Jim to look at the bright side of this illness were partly because she was still trying to deny the seriousness of the illness, whereas Jim was grieving the loss of his health. ◦Dr. K. was able to help Jim and Harriet realize that both views were helpful at different times, and that they could share their views without trying to convince one another about who was correct.

Normalize Common Family Responses to Illness

◦Families are reassured to learn that their responses and feelings are “normal.”

◦“normalizing function” is one of the benefits of support groups and internet support groups of others experiencing the same or similar illnesses.

Normalize Common Family Responses

1. Encourage the family to openly discuss the illness and their emotional responses.2.Ask directly about their experience.3. Elicit and empathize with feelings associated with the family’s specific problems concerning the illness.4. Inquire about common emotional responses.5. Ask the patient or a family member what kind of feelings they have seen in other family members.6. Help family members accept the patient’s feelings.

Enhance the Family’s Sense of Agency: Help the Family Determine What Can Be Changed and Accept What They Cannot Control

◦Illness is always an out-of-control condition.

◦Enhancing agency means things like increasing involvement in one’s care, or setting limits on a family member’s “helpfulness.” Education, making choices about treatment, or specific involvement of others enhances sense of agency.

Help the Family Become Effective Advocates

◦Most serious chronic illnesses involved extended and repeated contact with multiple medical specialists and community agencies. The primary care clinician can help the family work effectively within the healthcare system

Facilitate the Family’s Involvement in the Care of the Patient Through Negotiations with the Patient

◦Most families would like to assist the patient in the care of his or her illness, but sometimes have difficulty negotiating an optimal plan. Clinicians can discourage family conflict by helping family members be available for assistance while respecting the patient’s right for autonomy

◦1. Encourage all appropriate family members to learn specific skills involved in the care of the patient.

◦2. Have the patient tell other family members how they can help.

Help the Family Balance the Demands of the Illness and the Needs of Family Members

◦Encourage the family to normalize family life as much as possible, by only changing those aspects of family life that must be altered.◦the patient’s illness is only one aspect of family life.◦focus on family activities other than illness is helpful for family members and for the person with illness.

Encourage Connections with Others◦As families move from acute illness crisis to the chronic care stage, they can become increasingly isolated from others.

◦encourage families to maintain relationships, and accept the resources that others are willing to provide.

Identify Families Requiring Referral for Medical Family Therapy

◦Because of the enormous changes required, most families dealing with serious chronic illness can benefit from supportive family counseling

Specific indications for referral include:

◦ Poor management or complications of the illness.◦ The development of any serious psychiatric disorder (e.g., severe anxiety, depression, or suicidal thinking).◦ Illness or symptoms in other family members. ◦Emotional disturbance in other family members (e.g., depression, anxiety, school or work problems, chronic insomnia).◦ Family, marital, or sexual problems.

◦Jim became withdrawn and depressed 2 years after diagnosis, and Harriet’s migraine headaches became incapacitating. Despite Dr. K.’s counseling during office visits, the couple fought more about Harriet’s attempts to help Jim, which only made him more angry and withdrawn. ◦Dr. K. suggested that they might benefit from seeing a counselor on a more regular basis to deal with the tremendous stresses related to the illness. The couple agreed and sought treatment with a medical family therapist for several months. Throughout that time, they continued to see Dr. K. for medication management and support. They recognized that their living situation had not drastically changed, but they were better able to support one another and their children.

◦As family members face their fears and uncertainties, they can also discover the importance of one another, and the valued aspects of their lives.◦A clinician is one of the few who can intimately share this journey with patients and families. A clinician who is willing to listen, to talk honestly, and to provide needed information and support to both patients and their families, can make this journey easier for all.