The ways in which the wife's lifestyle is affected by her husband's chronic lung disease have not been described in the literature. If the problems experienced by wives of COPD patients were identified the wives could be prepared to anticipate the problems and deal better with them. In an earlier study it was found that the wife takes on new roles and responsibilities such as bread winner and parttime care-giver.1
Chronic obstructive pulmonary diseases include asthma, chronic bronchitis, emphysema and various combinations of these entities. While asthma is a reversible disorder, chronic bronchitis and emphysema are progressive and incurable diseases. Because of the progressive nature of chronic bronchitis, emphysema and the constant threat of exacerbations the prognosis is often poor.
The COPD patient tends to have little energy available for participation in daily activities and is usually unable to perform customary roles. Barstow reported that the presence of a significant other in the home is probably the single most important factor in adjustment to chronic illness such as COPD.2 For men with COPD, the supportive person is usually the wife. Typically, the husband depends on the spouse for transportation, assistance with bathing and obtaining prescriptions as well r with postural drainage and percussion. In addition to helping the husband with his treatment program it is common for the spouse to return to work and to relinquish much of her own life. The loss of the husband's income coupled with the high cost of medications often causes economic strain. Additional distress may arise from the compromised sexual abilities of males with COPD. The sexual impairment is usually attributed to shortness of breath and easy fatigability.
The Spouse and Illness
Individuals who have an acute or chronic illness are now discharged earlier from the hospital. Providing care for the ill partner at home is stressful because it necessitates changes in family roles and reassignment of responsibilities. The chronically ill face multiple problems in daily living including preventing medical crises, controlling symptoms, carrying out medical regimens, preventing or living with social isolation, adjusting to changes in the course of the disease, attempting to normalize interaction with others, and obtaining sufficient funds for treatment.3
In order to determine what some of the problems experienced by COPD wives were, we conducted an exploratory study. The questions posed were:
1 . To what extent are husbands with COPD dependent upon their wives?
2 . What additional roles and responsibilities do the wives assume?
3. What are the problems and worries encountered on a day-to-day basis?
4. What changes in life style are made?
5. What level of subjective stress and what degree of life satisfaction are experienced by the wives?
Sample - Data were collected from a convenience sample of 76 subjects. Forty-six subjects were the wives of men who had COPD and 30 were wives whose husbands did not have a chronic illness. The 30 women in the comparison group were recruited from church groups and social groups in the same or similar cities in which the other wives resided. This approach was used in order to obtain a comparison group with similar characteristics.
One COPD wife was black; all other respondents were white. The COPD wives and comparison women were similar on several characteristics. They completed at least a high school education, were retired from employment and had a family income of more than $20,000. On the average the COPD wives were 65 years of age and married for 36 years, while the comparison women had a mean age of 58 years and were married for 33 years.
Procedure - Married men with a diagnosis of COPD were identified from the rosters for patient education programs sponsored by the American Lung Association-Connecticut. Letters were sent to the married men who were asked to invite their wives to participate in the study. When informed consent was received, a Verification of Illness form was sent to each husband's physician to obtain a statement of diagnosis and an estimate of illness severity.4 The Classification of Patients with Chronic Airway Obstruction form served as a guide for estimating illness severity.4
More than three-fourths of the husbands (N = 36, 78%) had a medical diagnosis of chronic bronchitis, emphysema or chronic bronchitis and emphysema. Of the remaining ten husbands, four had a diagnosis of asthma and six had a diagnosis of asthma with chronic bronchitis or emphysema. Physicians rated most of them as 24% of the husbands moderately restricted, 35% markedly, and 30% severely restricted in activity, respectively. Only three husbands were rated as Class I (recognized disease with no restrictions) and two as Class V (very severely restricted activity).
The questionnaire included four sections: 1) Biographic Data form, 2) Illness Impact form, 3) Subjective Stress Scale, and 4) Life Satisfaction IndexA.5,6,7
Dependence on Spouse - While onehalf of the husbands with COPD did not need help with personal activities, some husbands were dependent upon their wives most of the time or some of the time for activities of daily living: bathing = 17%, dressing = 22%, eating = 15%, walking inside the house = 13%, cleaning aerosol equipment = 13%. Three husbands were dependent upon their wives for these activities all of the time.
Added Responsibilities - More than one-third (35%) of the wives reported that they assumed new roles and responsibilities because of their husband's illness. Twenty-seven (59%) wives indicated that they now handled indoor responsibilities such as minor repairs, lifting and washing windows. More than one-half (61%) of the wives indicating that they were now responsible for outdoor activities such as gardening, mowing the lawn and shoveling snow.
Some wives indicated that their husbands joined them on shopping trips. Usually the husband drove the car and the wife did the errands. Some husbands accompanied their wives into the stores but the wives carried the packages.
Psychological Considerations - The major problems identified by the wives were "his attitude, irritability and complaints" (20%) and "the loss of my freedom" (20%). These wives worried most about their husband's symptoms and condition and whether or not he would recover from exacerbations (44%).
The COPD wives had emotional support systems in their sons or daughters (46%), with friends (35%) or with other family members (26%). Only 15 wives (33%) reported that they talked over problems with their husbands. Wives usually indicated that they kept disturbing information from their husbands in fear of distress-caused exacerbations of the illness. In fact, some wives reported feelings of guilt about causing their husbands to experience respiratory distress and therefore limited their expression of strong feelings.
When these wives were in need of help more than two-thirds (70%) reported that they called upon their sons or daughters. Twenty-one (46%) wives indicated that they could rely on physicians for help.
Lifestyle Changes - Most wives whose husbands have COPD gave up recreational and social activities because of their husband's illness. However, two younger wives reported that they continued with some activities such as swimming or tennis without their husbands.
Since the COPD patients and spouses curtailed their social activities most reported some interest in hobbies or diversions. The range of diversions including reading, knitting, macramè, ceramics and gardening, using nontoxic, non-allergic materials.
The need to consider their husband's health and environment was mentioned by ten wives. Because of the variety of factors that influence the husband's health status, his level of functioning tended to fluctuate on a day-to-day basis. Planning ahead thereby presented difficulties. Social activities had been given up because the secondhand smoke in the environment would precipitate symptoms in their husbands.
Sleep patterns - Nearly all of the wives reported that their husbands awakened at some point every night (40%) or some nights (54%) because of shortness of breath, coughing or restlessness. A few wives indicated that they had obtained twin beds or had moved to a bedroom of their own so they could sleep.
Marital relations - Only six wives reported that they had sexual relations on a weekly basis and nine indicated that they had relations at least once per month. However, more than one-half (54%) of the wives reported that they no longer had marital relations. The wives apparently did not perceive this change as negative since 21 reported "no desire for marital relations" and 13 indicated that "the present level of sexual activity was OK." Only five wives indicated that they "would like marital relations more often." Wives in the comparison group reported more frequent marital relations. Only three wives in the comparison group indicated that they no longer had marital relations while four reported no desire for marital relations.
Impact on Spouse - Because of the decrease in family income, when the husband became disabled, some wives worked longer years than they had planned, while others found it necessary to return to work. Nearly all of the wives had to assume responsibility for financial management as well as household repairs and upkeep.
The wives whose husbands have COPD had significantly higher subjective stress scores and lower life satisfaction scores than did the wives whose husbands did not have a chronic illness.
The study was conducted to determine how a husband's chronic illness (COPD) affected his wife's lifestyle. The results of the study indicate that wives whose husbands have COPD expend a considerable amount of time and energy in caring for the husband and assuming responsibility for the tasks he can no longer perform. It was found that the COPD wives had high levels of subjective stress and low life satisfaction.
The data suggest several areas in which professional nurses could provide teaching and anticipatory guidance for wives whose husbands have COPD.
1) Since a number of illnesses are stress-linked, the wives should be taught techniques to reduce their levels of stress. For example, instruction in relaxation techniques and suggestions concerning diversions and recreational activities would assist the women to decrease their levels of stress.
2) The wives should be advised to have a physical exam each year to evaluate the presence of stress-related disorders. Some wives may conceal symptoms or may not consult a care giver about their own health because of cost or because of the responsibility they feel for their husband's care.
3) Counseling may help the wives to explore their feelings of frustration, guilt, the losses they have experienced and the adjustments in lifestyle they have had to make.
4) The wives may need assistance in forming support networks so that at least some of the time responsibilities for respiratory care and tasks related to family life can be assumed by others. Additionally, the wife may need direction in exploring community agencies which would assist in emergencies such as obtaining prescriptions, taking the husband to the hospital or care giver's office.
5) Wives whose husbands have COPD need information about the disorder, the husband's activity level and the treatment plan. Unnecessary problems in carrying out day-to-day care at home could be prevented if the treatment plan were discussed and clarified with both the patient and the spouse. Also, when aspects of the plan are clarified with both partners it may help to alleviate some of the stress experienced by the wife. The support of the wife is critical in helping the husband manage his treatment plan.
6) The wives also need instruction in controlled breathing techniques such as pursed- 1 ip breathing and diaphragmatic breathing. Wives who are competent in these techniques can coach their husbands when the husbands experience a shortness of breath.
7) Direction given to the husband and spouse concerning pulmonary drainage before bedtime and positioning in bed may facilitate a more restful sleep. Additionally, the medication schedule should be assessed to determine if medications are being taken in correct amounts and at optimum times.
8) Consultation with persons in the Discharge Planning Office or Social Service Department will provide information about insurance coverage, financial assistance and home-care programs. This information is particularly important in view of the cost of medications, home oxygen and equipment such as nebulizers.
9) Husbands and wives could also be counseled about sexual activity. Specifically, couples could be advised about the use of less stressful positions, as well as the use of rest periods, relaxation techniques and bronchodilators before starting intercourse.
The aim of counseling should also be to help couples increase intimacy in its broadest sense and to explore alternative ways to express their sexuality. Sexual intercourse is only one aspect of sexual expression. Other forms of expression of love, such as caressing, holding and embracing are important for satisfaction in a relationship with another.8·9
10) Information about the use of portable oxygen equipment, handicap parking stickers and measures to facilitate travel can be obtained from the American Lung Association. Also, that agency's state office or branch office could provide a listing of restaurants with no smoking sections.
11) Information about educational programs and patient and family support groups can be obtained from the American Lung Association and its branches.
In sum, wives whose husbands have COPD need to learn techniques for reducing their levels of stress. The wives also need clarification about their husband's COPD and treatment plan and to learn strategies for more effective managing day-to-day care and problems. Care givers should enable the COPD wives and their families to attain the best quality of life possible within the limits imposed by the chronic disorder.
- 1 . Sexton DL: Adults' Health Beliefs and Health Behavior. Boston: Boston University, 1974 (Unpublished doctoral dissertation).
- 2. Barstow RE: Coping with Emphysema. San Francisco: University of California, 1973. (Unpublished doctoral dissertation).
- 3 . Strauss AL: Chronic Illness and the Quality of Lifo. St. Louis, C.V. Mosby Co., 1975.
- 4. American Lung Association, Report of Task Force on Comprehensive and Continuing Care for Patients with COPD, New York: American Lung Association, 1975.
- 5. Gallo BM: Home Care Project for COPD Patients, Hartford, Connecticut: Visiting Nurses Association of Hartford, Inc., 1977 (Unpublished research report).
- 6. Chapman JM, Reeder LG, Massey FJ, Borum ER, et al: Relationship of stress, tranquilizers and serum cholesterol levels in a sample population under study for coronary heart disease, American Journal of Epidemiology. 1966; 83:537-547.
- 7. Neugarten B, Havinghurst R, Tobin S: The measurement of life satisfaction. Journal of Gerontology. 1961; 16:134-143.
- 8. McCarthy P: Geriatric sexuality; Capacity, interest and opportunity, J Geronlolog Nurs, 1979; 5:20-24.
- 9. Barnard MJ, Clancy BJ, Krantz EK: Sexuality for Health Professionals. Philadelphia, WB Saunders Co, 1978.