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Counselling at the time of diagnosis

Last update: 29 Aug 2016

Having a child diagnosed with cerebral palsy is a major, life-changing event
Parents are encouraged to seek counselling at this time – and in future times of distress
Counselling can help people cope with challenging circumstances and improve their quality of life.

Who is it for?

Counselling at the time of diagnosis is for the family members and carers of any child who has been diagnosed with cerebral palsy or is at risk of cerebral palsy.

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.

More about counselling at time of diagnosis

Counselling at the time of diagnosis is the support and therapy offered to families when a diagnosis of cerebral palsy is given and, subsequently, as they adjust and learn to cope with the complexities of their child’s diagnosis. Families are encouraged to seek supportive counselling if they have a child recently diagnosed with cerebral palsy and they are feeling stressed or anxious about caring for the child or about what the future holds.
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 delivered2-3. 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 diagnosis1, 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.

Best available research evidence

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.

Date of literature searches: August 2016

  1. Sloper, P. & Turner, S. (1993). Determinants of parental satisfaction with disclosure of disability. Developmental Medicine and Child Neurology, 35, 816-825. See abstract
  2. Quine, L., & Pahl, J. (1986). First diagnosis of severe mental handicap: Characteristics of unsatisfactory encounters between doctors and parents. Social Science & Medicine, 22(1), 53–62. See abstract
  3. Dagenais, L., Hall, N., Majnemer, A., Birnbaum, R., Dumas, F., Gosselin, J., Koclas, L. & Shevel, M. (2006). Communicating a diagnosis of cerebral palsy: Caregiver satisfaction and stress. Pediatric Neurology, 35(6), 408-414. See abstract
  4. Quine, L., & Rutter, D.R. (1994). First diagnosis of severe mental and physical disability: A study of doctor-parent communication. Journal of Child Psychology and Psychiatry, 35(7), 1273-1287. See abstract
  5. Higginson,J.,& Matthewson, M. (2014) Working therapeutically with parents after the diagnosis of a child’s cerebral palsy: Issues and practice . Australian Journal of Rehabilitation Counselling, 1(20), 50-66. See abstract
Find out about CP Check-Up™

Cerebral Palsy Alliance offers a service called CP Check-Up™ which provides ongoing surveillance of the health and well-being of our clients aged 0-18 years.
The information on this page was developed using the best research evidence combined with the expertise of clinicians and people with cerebral palsy and their families. It is provided to help people with cerebral palsy, their families and caregivers, clinicians and service providers make decisions about suitable interventions. This information is intended to support, but not replace, information exchanged, and decisions made, between people with cerebral palsy, their families and health professionals.