Decreasing the Demands

A new research study shows how mothers can reduce their stress load. Technological advances in medicine have had different impacts on the rehabilitation field. Today, many children who would have died some years ago are surviving. Recent statistics indicate an increase in the disability rate for children from 4.8 to 5.6 per cent. In fact, there are more than 12 million children living with a disability in the United States.

Research shows that over time, caring for a child with special needs can lead to enormous strain and fatigue and often may result in physical and psychological health problems for the mother.

The purpose of our study was to identify the factors that are significantly associated with the sense of "burden" perceived by women responsible for the care of a child with a physical disability. For this research we examined the consequences on the caregiver’s health, psychological well-being, finances and social life, and the relationship between the caregiver and the child with a disability.

A distinction was also made between concrete and emotional stress of caregiving. Concrete costs included tangible forms of modifications in the life of the mother due to the presence of the child with a disability (e.g. change of residence or cessation of work). Emotional costs referred to the psychological price that the mother had to pay. It might be frustration, loneliness, anger or depression.

Participating in the study were 74 mothers living with a child with a physical disability (cerebral palsy or spina bifida) aged between six and 18 years. All resided within the geographic area of Quebec City. Mothers averaged 39.2 years of age, ranging between 27 and 58 years. The majority of them (85.1 per cent) had been married for an average of 16 years.

Most of the women interviewed described themselves as being in good health. But a large number of them (63.5 per cent) attested to having such health problems as stress, anxiety, equilibrium disorders, skeletal and articulatory problems.

From the results of the study, four predictors of the impact of caregiving were derived: the amount of time spent on caregiving, the secondary health problems of the child, the number of years of marriage and the use of certain coping strategies.

The amount of time accorded to caregiving tasks by the mother was found to be the best predictor of total, concrete and emotional strain. The more time she spent on caring for her child, the greater was her perception of stress. It seems that mothers who invested a considerable amount of time in caring for their child appeared to be the most vulnerable to stress. For these women, the role of caregiving was central to their life and often contributed to their disregard or inattention of their own identity.

This finding indicates the important need for recognizing the positive influence of direct services that provide mothers with more freedom and greater satisfaction. Respite services can temporarily relieve caregivers of those responsibilities that restrict and confine them. Furthermore, professionals should try to avoid placing the mother in a situation whereby she alone is required to perform the caregiving tasks. They must consider limiting their demands on the mother and involving the father sooner and more often in the rehabilitation process. Development and utilization of community services (e.g. kindergarten) must also be encouraged. The interaction between all family members, the rehabilitation team and the community may be a way of helping the mothers cope with their situation and enhancing the quality of life of the entire family.

We also found a relationship between the concrete impact of caregiving and the number of secondary health problems of the child with a disability. This revealed the important role of technical aids for mothers of children with physical disabilities. These devices must be well chosen not only because of their impact on the time spent on caregiving and their effectiveness in simplifying the mothers’ tasks, but also because of their potential to minimize the impact of health problems on the mother.

Another important finding of this study was that the duration of the marriage (in terms of number of years) had a positive influence on the mother’s perception of total strain. This suggests that the presence of the father can contribute to reducing the mother’s sense of overload. Furthermore, the father can be viewed as being an important financial resource as well as a person who can take care of the child if something happens to the mother. In light of this finding, professionals need to encourage communication between parents and help them work together in the rehabilitation process.

One of the strongest predictors of the stress of caring was found to be the use of certain coping strategies. Our findings revealed that the ways in which the mothers faced stressful situations contributed to their perception of strain. It appears that the use of positive coping strategies (e.g. facing reality, asking for help, trying to change expectations) decreases the overload score, and that particular negative attitudes (e.g. hiding feelings, blaming oneself) worsen the perception of the impact of caregiving.

The potency of coping strategies can have profound implications for professionals. Therapeutic interventions must be developed to promote positive coping approaches. Setting realistic goals, providing mothers with practical information, answering their questions, listening to their needs, helping them in decision making and encouraging them to deal with concrete and emotional problems are some of the many ways to help them cope.

Since children with physical disabilities have a strong lifetime impact on the mother in her caregiving role, we think that decreasing the demands on the mother will have a positive impact on the quality of life of the entire family. Multi-disciplinary and early intervention must take into consideration the needs of all family members, especially the mother.

(Sylvie Tetreault, Ph.D., OT(C), is associate professor in the Department of Occupational Therapy, Faculty of Medicine, Laval University, Cite Universitaire, Quebec, QC G1K 7P4. Rhoda Weiss-Lambrou, M.Sc., OT(C), is professor at the School of Rehabilitation, Faculty of Medicine, University of Montreal, Montreal, QC H3C 3J7. Please direct all correspondence to
Dr. Tetreault.)

CANADIAN ASSOCIATION OF OCCUPATIONAL THERAPY
CARLETON TECHNICAL & TRAINING CENTRE
3400-1125 COLONEL BY DRIVE
OTTAWA, ON K1S 5R1
TEL: (613) 523-2268
FAX: (613) 523-2552
WEBSITE: http://www.caot.ca/