Planning Rehabilitation: Issues for Parents and Adolescents

Heather McGavin
Children's Developmental Rehabilitation Programme, Chedoke-McMaster Hospitals, Hamilton

©1996 McGavin, H.; Published and distributed by the Neurodevelopmental Clinical Research Unit (NCRU)
As of Oct. 1, 1998, the NCRU is called CanChild Centre for Childhood Disability Research

Have you ever wondered who your client really is? Is it the parent with particular goals, or is it the adolescent who may have different goals? Have you ever felt at a loss for how to deal with the situation? Well, you are not alone. This issue arises often for many of us.

With changes to enhance family-centredness, one would hope that the literature would provide us with some direction. Unfortunately, this is not the case. There is a great deal of literature about the development of family-centred service and authors are continuing to explore its ramifications. All of these authors approach the subject from the perspective of the family with a preschool child. None of them deal with adolescents and their own emerging goals. These may be quite different from those of their parents.

"How do rehabilitation issues compare between parents and adolescents?". In the winter of 1995, a cross-sectional survey was done with 14 adolescents and their parents. All adolescents had some type of physical disability and enough verbal skills to adequately express basic needs. It will probably not surprise you that the level of agreement of issues between parents and adolescents was very low.

The Canadian Occupational Performance Measure (Law, Baptiste, Carswell, McColl, Polatajko, & Pollock, 1994) was administered to each adolescent and to each parent or set of parents interviewed. The COPM is an individualized measure of a client's self-perception of occupational performance and identifies issues or concerns regarding various activities in daily life in the areas of self-care, productivity, and leisure. With the COPM, the client is asked to rate the importance of all of the issues identified, on a scale of 1 to 10. They are then asked to choose the 5 most important issues (or priorities) and are asked to rate how well they are performed and how satisfied they are with the performance. Performance and satisfaction are also rated on scales of 1 to 10.

Here are the findings of the survey:

For the 35 agreed-upon issues, the importance ratings between parents and adolescents were compared:

For the 5 most important issues identified by parents compared to their adolescents, the agreement on the importance was as follows:

For the 7 agreed-upon priorities, the performance and satisfaction ratings were compared:

These data indicate that the parents had more concerns and there were significant differences between adolescents and their parents.

To a great extent, many of the issues identified were typical of most adolescents and their parents. However, because the adolescents in this study do have disabilities, there were unique concerns related to that. Many themes emerged.

Self-Care

One of the areas that raised the greatest number of concerns for the parents was self-care. The assistance and supervision required was of concern for future independence. There was also frustration with the constant reminding that is required because of the lack of interest in personal grooming and hygiene. This seems to reflect typical concerns that many parents have during their children's adolescence. The adolescents mentioned the assistance required for self-care, but for the most part, seemed to accept that this is required. There were probably an equal number of concerns raised by both parents and adolescents regarding mobility and transfers although the focus did vary. The adolescents raised more concerns about getting in and out of tubs and showers and parents had more concerns about getting in and out of vehicles.

Recreation

Parents had many concerns about quiet recreational pursuits (e.g., too much time indoors, alone, limited reading skills). Parents were concerned that their adolescents were not active enough and were choosing sedentary activities. The adolescents made little mention of these concerns. They did have concerns about active recreation and sports though. They wanted more availability of "disabled" sports activities and they wanted to be able to play sports better.

Social

Many concerns about social lives were identified by both parents and adolescents. Several adolescents indicated that they had few friends, that they did not do much with friends, and that they were not happy with this situation. Parents' concerns were not only about the lack of friends, but they also had concerns about the skills required to make and keep friends.

Self-Esteem

Self-esteem was mentioned by several parents and one adolescent, but there is nothing in the literature to suggest that lowered self-esteem is related to having a disability. There is research to suggest that adolescents with disabilities believe that their social skills are not the same as adolescents without disabilities, but with any studies done, their self-esteem is comparable (Hansen, 1995; King, Shultz, Steel, Gilpin,& Cathers, 1993).

Future Plans

Concern about the future was expressed by most parents. They want their sons & daughters to be contributing members of society. Most were unsure about how to envision the future - what kinds of jobs and accommodations would be available and/or possible. The adolescents also want to be independent some day, but they were less clear about what the issues were that they would be facing, or how they felt that they could manage.

The other major issue mentioned by over half of the parents was that of the vulnerability of their adolescents (mainly daughters). They had concerns about their vulnerability physically, socially, and financially.

Implications

Generally speaking, adolescents were more concerned with the here and now, and parents were more concerned about the implications of the current situations for the future. This reflects normal adolescence and family functioning.

What does all of this mean for children's rehabilitation? Unfortunately, there are no magic answers. We do know that under the new Consent to Treatment Act, that adolescents' goals must be acknowledged. Perhaps if clients were engaged in goal setting at a very young age, it would create a working dynamic between parent, child, and therapist that could be further developed as the child reaches adolescence. The use of tools such as the COPM on a consistent basis allows for a full exploration of the issues for both adolescents and parents and this provides a basis for negotiation and collaboration regarding therapeutic goals.

We need to explore in much greater detail how many of the issues that we are dealing with are normal developmental issues and how many are related to the disabilities. Perhaps studies on a larger scale could help. Also, values and principles for family-centred care and guidelines for rehabilitation teams need to be enhanced to address the needs of adolescents. Hopefully we will soon see new models of practice incorporating adolescents as equal partners with their parents. But in the meantime, we can continue to use our best clinical judgment and negotiating skills to work through some of these very challenging clinical situations.

References

Hansen, J. (1995). Social self-concept in children with cerebral palsy: Exploring the role of friendship. Unpublished manuscript. Toronto: Hugh MacMillan Rehabilitation Centre.

King, G. A. Shultz, I. Z., Steel, K., Gilpin, M., & Cathers, T. (1993). Self-evaluation and self-concept of adolescents with physical disabilities. The American Journal of Occupational Therapy, 47 (2), 132-140.

Law, M., Baptiste, S., Carswell, A., McColl, M.A., Polatajko, H., & Pollock, N. (1994). Canadian Occupational Performance Measure (2nd ed.). Toronto: The Canadian Association of Occupational Therapists.