The use of home programmes Cerebral Palsy as a therapeutic intervention

This article was written by Nicole Whitehead as part of the Cerebral Palsy course. If you are interested in any of our course check out Physiopedia plus.

The main goals of therapy for children with cerebral palsy are to improve function and ultimately participation in society. Motor learning and development takes place by repeating a task several times and in various environments. For this reason therapists have been prescribing home programs to caregivers to practice tasks done in therapy at home. Home programs, are therefore, a treatment strategy whereby therapists and the family work together to design a specific set of activities that work on pre-established goals for the child. The activities are performed by the family in the home setting1,2.

The use of a home program has many benefits for both the family and the child:

A home program may improve functional outcomes in the child as it encourages opportunities for repeated practice3. In many setting, especially in 3rd world countries, resources are limited, there are too few therapists, clinics are inaccessible to families and there may be long waiting lists for children to receive therapy3. Therapy is often very costly1. By introducing a home program some of these constraints may be lessened as the parent becomes an active participant in the child’s therapy. Parents become active participants in their child’s therapy. This in turn helps to improve the knowledge of their child’s condition and interactions within the family may also be improved upon3,4. Caregiver strain may be decreased4.

Are Home programs effective?

Research in the effectiveness of home programs is scanty. A lot of studies have focused

on compliance of parents to home programs as well as their perceptions of these programs. Two studies have recently showed significant improvements in function with home programs.

A pre-test post test designed pilot study by Novak, Cussick and Lowe, 2007 found significant improvements in PEDI scores, GAS goals and in upper limb function after administering a home program in 20 children with cerebral palsy2.

Novak, Cusick and Lannin (2009) conducted a randomized double blind controlled trial to assess the effects of an occupational therapy home program (OTHP) compared to no home program on GAS goals, patient function and participation and quality of upper limb function. After conducting the program for 8 weeks they found that there were significant improvements in parent satisfaction, function, participation and GAS goals compared to children who did not receive an OTHP1.

However, further research is still required in the field of home programs. Novak (2006) reports that evidence in terms of the design and outcomes and effectiveness of home programs is low. There are no guidelines on how to design or draw up a home program. The duration and intensity of using the home program is lacking3. The use of these program in resource limited settings should also be investigated.

Parental perceptions of home programs:

Ultimately the family needs to participate in the implementation of the home program. There are certain barriers that they may experience when implanting a program. A mother’s responsibilities to her family may hinder her participation with the home program

3,4. The home program may be too time consuming and difficult to carry out thus leading to frustration and increased caregiver strain4. Hinojosa (1991) found that mothers tended to adapt the home programs given to them by therapists to suit their needs4. They would incorporate certain activities into their daily routines and only do activities that are easy and enjoyable for the child4. When the mothers adapt these programs they feel that it is no longer an intervention program and this may increase family stress as they believe that the therapists are the experts when it comes to the child and have unique skills and techniques that she is not capable of4. Mothers found that observing therapists helped them to learn how to handle their children and how to interact with them4. They also preferred it if therapists only demonstrated one technique at a time4.

One needs to remember that raising a child with cerebral palsy is no easy task and poses a wide variety of challenges. Once a diagnosis of CP has been made, parents have to make huge adjustments in order to deal with their child as well as their own emotions and feelings5.. We need to remember that we need to provide programs that take into consideration the emotional well being of the parent5 and that result in little or no stress to the family, Instead of thinking of parents COMPLYING to a home program PARTICIPATION with the program should be key. The shift should be to parental participation and recognizing that they are the experts when it comes to their child.

Features of a good home program

Home programs should “be sensitive to family direction, daily routine, resources as well as the attributes of the child and the potential capacity of the family to enhance competency for caring….. They need to be well designed, appropriately implemented, and effectively evaluated” (Novak, 2009).

Parents need to be made key participants in not only the implementation of the home 
program but also in the design of the program1. It is important to note that the use of the home programs be based on a family centred approach3.  This ensures collaboration with the family and acknowledges that the family is the expert when it comes to the child. The parents and the therapists are partners in caring for the child3. The family needs to be proactive in developing the activities in partnership with the therapist. Activities should be carefully selected so that participation is maximized and so that the family’s needs are met4. 

All home programs need to be documented3. This is essential in helping parents remember what they need to do with the child, why they are doing the activity and how to do it. Parents seem to prefer programs that are written and make use of pictures3. With advances in technology this should be made easier. Taking photos of the specific activities can be done and captions can be added. Video recording from a caregiver’s mobile phone could also be used. Parents may respond better to seeing their child and themselves in the pictures and may prefer this to line drawings.

Home programs should be incorporated into the daily routine of the family and the child3. The program needs to improve function and reduce caregiver strain. Activities that could be included in the program may include meal times, how to dress and undress the child, ideas for handling and positioning, use of assistive devices and how to communicate with the child during all activities. Activities should be enjoyable to the child and be incorporated into play.

The program needs to be easy for the caregiver to carry out. If it is too difficult, it may result in unnecessary frustration. When demonstrating the program to the mother, therapists should teach them one technique at a time.  It is important that therapist allow mothers to observe them handling the child and in turn the therapist should also observe the mother performing some of the activities. The therapist should encourage the mother  
and provide positive feedback3,4. 

A model for designing and implementing a home program:

Novak 2006 has suggested a model for use for designing a home program for a child with cerebral palsy. The diagram below depicts the 5 processes that take place. Novak (2006) used this model in the two studies discussed above.

PHASE 1: Establish a collaborative role with the caregiver. 

The family is the focal point and take responsibility for the care of the child. The therapists and parents are partners, each with their own unique set of skills. Collaboration is achieved through the interpersonal skills of the therapist, the therapists valuing the role that the caregivers play and the caregivers set of skills3.

PHASE 2: Establishing mutually agreed upon goals. 

The therapist encourages family decision making. They allow the parents to understand the child’s underlying problems and identify them in order to set appropriate goals. Collaborative assessment takes place with the therapist and family. The therapist helps identify the technical components as to why certain tasks are challenging for the child

and assist in identifying goals. Goals are formulated in language that parents can understand, the goals can be prioritized and should be measurable and time framed3.

PHASE 3 Selection of therapeutic activities

This includes the supports the child should be using for examples splints, the tasks and activities the child can perform. Again this takes on a collaborative approach. The program should be documented and the caregivers receive training on how to conduct the specific program. The parent should feel capable comfortable and confident in carrying out the program3.

PHASE 4 Implementation of the home program

Therapists support the parents in carrying out the program and ensure that it is feasible and practical to use. The program needs to meet the need of the family and achieve the goals set out. Therapists should provide support to the family. Support may include: contact with the parents on a regular basis; helping parents to identify areas of improvement; watching the parent perform the activities and providing appropriate feedback; providing positive feedback so that parent’s confidence improves; showing empathy and concern for family3.

PHASE 5 Evaluating the program

One needs to evaluate if the program has had any impact on the life of the family and if the particular goals set out were met. Once again the family’s perspective needs to be taken into account. The use of standardized tools is also important3.

Conclusion
There is limited research about the effectiveness of home programs in the treatment of children with cerebral palsy. However, therapists still “prescribe” programs to families of children with CP. They expect parents to carry out these programs.

Two studies have showed the effectiveness of designing a home program and implementing it based on a family centered approach1,2. In this approach the caregivers and the therapists are partners and collaborate to determine the child’s goals, to develop specific activities for the child and to implement the program1,2. The therapist supports the family and evaluates the program1,2.

With continued practice of implementing simple and practical home programs based on a family centred approach we may find more children attaining functional goals and becoming active participants within their family life and in society. The use of home programs using this approach may also be a feasible option for use in low resource settings with limited number of therapists.