Home programs for children and adults

Home programs are widely recommended by a variety of health professionals including occupational therapists, physiotherapists, speech pathologists, physicians, dieticians, educators, social workers and psychologists.

Cerebral Palsy Alliance offers a service where our therapists can develop a home program and support a person and family as they complete it. They can also help decide whether a home program is a good choice.

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Fees will apply for a health care practitioner assessment, to write the home program and to provide follow-up coaching sessions for the family. Fees will depend on the provider and the number of sessions needed. Check with the practitioner whether fees will also apply for report writing or therapist travel. There may be equipment costs which would depend on the goals and would be discussed at the time of assessment.

Ask health care providers if you are eligible for funding to assist with fees and equipment. People with a disability living in Australia may be eligible for a health care rebate through Medicare or funding from the National Disability Insurance Scheme.

The amount of time will depend on the recommended intensity or dose of the intervention.

The home, or other real-life environments are considered the best and most logical location to practise tasks considered important to the child or adult with a disability². Although home programs take time in a family’s life, they can be practiced when time permits - while waiting for therapy, between treatment sessions, during a break from an intervention or when it is difficult for a person and family to attend face-to-face therapy with a clinician². In addition, time spent going to therapy appointments can be reduced, in exchange for more time practicing in the home or community environments.

Some of the benefits of home programs include:

• Physical gains, such as improved muscle strength
• Activity gains, like learning to get dressed independently
• Participation gains, such as meaningful inclusion in a local community sporting team
• Environmental adaptations, such as positive change in parenting style to manage a child’s behaviour
• Personal gains, such as practising a goal that will enhance pleasure in life.

Home programs are usually completed over six to 12 weeks. The amount of time will depend on the recommended intensity of the intervention. It can range from as little as one hour per week to 15 hours per week. Some experts³ recommend home programs are carried out, on average, four times per week for 15 minutes per session, making a total dose of one hour per week. However, families planning to implement intense, contemporary intervention approaches designed to encourage movement and neuroplasticity gains (for example, constraint-induced movement therapy) will need to consider committing more time. The recommended time for this type of intervention will be more like seven to 14 hours of weekly practice over a six to eight-week period.

Assistance from preschool staff, teachers’ aides, volunteers, family members, paid assistants and carers may be sought to increase the opportunities for practice, either at home or in other familiar settings.

Parents have identified they are best able to undertake home programs when they receive these supports:

• Information and guidance from a health professional to set realistic expectations
• A treatment team that co-ordinates one home program, rather than the family having multiple home programs from different professionals
• A program created around the person’s goals, so they are motivated to carry out the program
• Emotional and physical support from other family members
• Using a logbook as a reminder to practise
• Being provided with the necessary equipment to carry out the home program⁴.
• Having a program with a small number of goals and activities, so the person feels confident and capable^2,4,5.

Families may feel concerned that they are not trained as therapists, however, specific guidelines can be used to create an effective home program.

The effectiveness of the home program will also depend on how it operates⁶. Research completed with children and their families suggests home programs established according to parent preferences are more likely to be used by parents, and at a higher dose^3,5. A model for setting up effective home programs² with children includes five steps:

1. Collaborate – establish a collaborative partnership, where the caregiver is the expert on their child and their home environment, and the health professional acts as a resource and coach
2. Set goals – the child and family set goals about what they would like to learn and practice in the home and in community settings
3. Create a program – develop a program which includes interventions known to be effective for helping children and families achieve their goals
4. Seek support – obtain regular support and coaching as a family to identify improvements and fine tune the complexity of the program as the child starts to improve
5. Evaluate – together with health professionals, the family evaluates the outcomes. The evaluation component is integral not optional, because research suggests that when parents can identify improvements in their child arising from the home program they are likely to practise more often².

It is really important for a health professional to carry out a thorough assessment to carefully target and monitor the intervention. Time is also required to establish goals and determine the type of support a person and family needs. A health professional will then provide a home program, usually in written format. This may be developed during an appointment or it may be developed outside of an appointment, depending on the level of detail required.

The second type of assessment measures the outcome of the intervention to determine whether a home program benefits a person and helps them to meet their goals. The health professional, together with the person with cerebral palsy and their family, will decide on the most suitable measure to use. Some examples of outcome measures include:

• Canadian Occupational Performance Measure (COPM) – measures change on everyday activities that people have identified as being a problem for themselves
• Goal Attainment Scaling (GAS goals) – measures whether the individual’s goals have been achieved.

We searched the medical and allied health literature to find the best available evidence of whether home programs are effective for people with cerebral palsy.

The search aimed to find the best available evidence that home programs help children and adults with cerebral palsy achieve their desired health outcomes.

No high quality research evaluating home programs for adults with cerebral palsy was located. The best available evidence for children was two randomised controlled trials (RCTs)^3,7 which evaluated home programs with children with cerebral palsy or brain injury.

Overall, high quality evidence shows that home programs are effective for improving self-care and motor abilities in children with cerebral palsy.

Although no research has been completed with adults, there is high-quality evidence in many other conditions that home programs are as effective as clinic-based treatments⁸. It is reasonable to think adults with cerebral palsy would benefit in the same way, even though the effectiveness of home programs for adults with cerebral palsy has not yet been specifically researched. Families, caregivers and specialist therapists are encouraged to carefully consider the unique goals and needs of each person with cerebral palsy to determine whether home programs should be implemented.

Home programs are effective compared to no intervention

Two RCTs provided high quality evidence that home programs are effective when compared to no intervention. The self-care and motor abilities (hand and arm skills, mobility) of children using the home programs improved. The home programs in both studies included goal directed training known to be an effective intervention. In one of the studies³, the home program included parent education and coaching as well as goal directed training. This study³ also found that children using the home program achieved their goals for intervention in a shorter amount of time than those without.

Home programs are an effective way to increase the amount of therapy

Several recent RCTs have studied the effects of different ways of delivering therapy (e.g., groups versus individual versus school-based). In each of these trials the authors used home programs to increase the “dose” of therapy^9-13, that is, the therapist delivered some of the therapy and the parent delivered some of the therapy. Examples of interventions delivered in this way include constraint-induced movement therapy, electrical stimulation, traditional physiotherapy and strength training. This increasing body of evidence validates home programs as a means of effectively increasing the “dose” of therapy. One of the RCTs⁹ evaluated face-to-face therapy plus home programs for infants at risk of cerebral palsy. Prior to this study, home programs had predominantly been used to supplement therapy for children over 4-years of age, where there is typically less funding for face-to-face therapy and thus home programs are more commonly used. It appears that home programs are valid to use to supplement the dose of evidence based interventions in infants, children and adults.