Counselling at the time of diagnosis

There are many options for finding a skilled counsellor to assist you and your family. Specially trained health workers such as social workers, psychologists, doctors and nurses work in hospitals, community health, disability services and private practices.

Cerebral Palsy Alliance offers services to families who wish to participate in counselling when or after their child is diagnosed with cerebral palsy, or is at risk of cerebral palsy.

Find a Cerebral Palsy Alliance service

Fees will apply to see a counsellor and will depend on the provider and the number of sessions needed. Check with the counsellor whether fees will also apply for development of a home program, report writing or counsellor travel.

Ask the counsellor if you are eligible for funding to assist with fees. If you live in Australia you may be eligible for a health care rebate through Medicare or funding from the National Disability Insurance Scheme.

The time it takes to achieve counselling goals will vary greatly and is highly individual.

Parents of a child newly diagnosed with cerebral palsy describe the experience as pivotal and life changing¹. They also report increased stress and anxiety when they have concerns about their child’s development, there is a delay in diagnosis or the diagnosis has been poorly delivered^2-3. With advances in detection, infants at risk of cerebral palsy are being identified very early. The period of uncertainty waiting to see whether a diagnosis is made is usually very stressful.

As cerebral palsy is a lifelong condition, a range of emotions may be experienced at different stages in the child’s life. Parents commonly report stress, depression, anxiety and relationship pressures. In addition, cerebral palsy is frequently associated with other diagnoses such as intellectual disability, epilepsy, behaviours of concern, and vision and hearing impairment. Counselling may be worthwhile at different times in a child’s life to assist a family to cope and adapt.

Counselling is a generic term covering different interventions which guide a person to express their thoughts and concerns and assist them to develop self-awareness and skills to resolve personal, social and psychological issues.

Effective counselling requires a skilled helping professional, who has warmth, sensitivity and openness, to take the time to ask about a parent’s experience of receiving the diagnosis and to link the family to relevant supports.

Counsellors provide a quality listening experience and the opportunity for families to express emotions including sadness, stress and anxiety arising from the diagnosis^{1, 3-5}. Counselling sessions aim to foster coping, quality of life and improved wellbeing⁵.

Counsellors will consider the strategies they can use to support the parents’ relationship with their child, including enhancing the communication skills of parents and their ability to respond to challenging life situations⁵.

To gain an understanding of the parent/family situation, counsellors may ask questions about the family’s strengths, resources, needs and challenges. They will clarify what is important to the family and should provide relevant information that is empowering to the family.⁵

• Providing detailed information about the diagnosis is considered to be empowering for parents and can help reduce their distress⁵
• Information about a diagnosis of cerebral palsy needs to be given clearly, as early as possible and at a pace that suits the individual needs of parents
• Family members will usually be offered written and verbal information relevant to their situation, which might include more details on cerebral palsy, or how to access financial and support services.

People from diverse language, cultural and ethnic backgrounds may have specific needs that should be considered in the counselling process. Examples include using an interpreter, or wanting to work with a health professional skilled in respectful, culturally inclusive counselling.

We searched the allied health, psychology and medical literature to find research evaluating the outcomes of using counselling at the time of diagnosis.

The search aimed to find the best available evidence about whether counselling for parents and carers at the time of diagnosis of cerebral palsy promoted coping and resilience.

When no research was located, the search was extended to identify the effects of counselling at the time of diagnosis in other groups of young children. Again, no research was located. We did find case studies, interviews and action research – none of which meets the criteria established for research evidence to support interventions. This literature, however, suggested that parents of children with cerebral palsy find counselling at the time of diagnosis promotes coping and adaptation.

Overall, there was no research specific to this topic. Diagnosis of a child with cerebral palsy can be a stressful and difficult time for a family. Counselling is conventionally used to address the psychological wellbeing of people in stressful life situations such as those experienced by families who have a child receiving a diagnosis of cerebral palsy. Until evidence becomes available, families of children who are newly diagnosed with cerebral palsy, or at risk of cerebral palsy, are encouraged to seek supportive counselling.