Supporting the pregnant woman who is disabled - guidelines for health professionals

Elaine McEwan Carty, Tali A Conine and Lorraine Hall from the School of Nursing in Vancouver, Canada, discuss guidelines for supporting pregnant, disabled women.

Women with Rheumatoid Arthritis (RA) often feel overwhelmed with fatigue both during pregnancy and the postpartum period. The inflammatory process associated with the disease and specific joint pain all contribute to the tiredness. The woman must pace herself so that she can have both systemic and joint rest. Two rest periods throughout the day, sitting to work whenever possible, sleeping eight to 10 hours at night, and wearing removable braces or splints to support joints will help reduce fatigue Support from family, friends, and community agencies is essential, particularly during the postpartum period when the woman with RA is apt to experience an exacerbation of her symptoms. Rest must be balanced by exercise to reduce stiffness and to prevent muscle atrophy and the loss of joint mobility. The woman’s exercise regimen should be directed by her regular physiotherapist and will usually consist of gentle, assisted range of motion exercises carried out once or twice a day just to the point of pain. Swimming is an excellent form of exercise during the pregnancy as long as chilling and fatigue are avoided.

The joint restriction common to RA and the body changes of pregnancy can make the simple act of dressing extremely difficult. The woman with limited hand and shoulder mobility may have to alter maternity clothes with velcro openings or large ring zippers. Antique buttonhooks are very helpful to manipulate small buttons found on many garments. Front-closure bras should be used and may need to be adapted with velcro.

Pregnancy and new parenthood put a strain on the sexual relationship of most couples. The fatigue and pain associated with RA may stress the relationship further. Planning the time of sexual activity will allow preparation that can make the experience more pleasurable. The midwife might suggest having sex at a time when the woman feels rested, taking an analgesic to reduce discomfort, using a warm bath or shower to reduce joint stiffness, and incorporating range of motion exercises and light massage into sexual pleasuring.

Contraceptive methods pose a number of problems for the woman with RA. Barrier methods such as the diaphragm, cervical cap, and contraceptive foam may be impossible for her to use because of the finger dexterity, trunk stability, and flexibility required for insertion. Oral contraceptive packages may also be difficult to manage for the woman with RA. If the woman’s partner wishes to take an active role in contraception, he can learn to insert the devices, assist her with the logistics of taking the pill, of if they would prefer, he can use a condom.

Discussion

The philosophy of holistic rehabilitation and the move toward independent living have led to a more participatory life by persons with chronic and disabling conditions. Our experience and the observations by other authors indicate that disabled persons usually consider carefully the potential difficulties in making the choice to have children. They show concern, seek information, and want to learn strategies for healthy and responsible parenting. Their anxieties are like those of other expectant or new parents but are intensified by lack of information, exposure to negative attitudes, and absence of support services and role models.

Any health care worker with interest, knowledge and compassion can play a significant and active role to change this situation. What is needed is someone to have an ongoing contact with the disabled client; have intimate knowledge of her living conditions, physical surroundings, and relationships; and have access to information and networks of professionals with a wide variety of backgrounds and interests. The midwife, we believe, would be effective in this role. Her willingness to help will remove obstacles to asking questions, identifying issues and problems, and experimenting with adaptive and compensatory approaches for realistic dealing with specific needs.

First published in Disability, Pregnancy & Parenthood international, Issue 3, July 1993.

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