Parental Reaction to Disability Guided By Dr. P. Sekar.,M.D.,D.C.H., Prof & H.O.D Pediatrics SRMIST Presented By K.Vadivelan.,M.P.T Research Scholar SRM College of Physiotherapy

Aim of Service to enable Parents Restoring Self Esteem Offering Emotional Support Looking at Whole Family Needs Being Proactive but recognizing that disability is only one factor in the complex life of the family

Cont… Ensuring services are transparent, equitable and as conveniently organized as possible to allow parents time for other life needs. Helping families to consolidate their own resources and seek others. Helping Child-Parent interaction and relationship

Evaluating the service through: An equal Parent/Professional partnership Mutual respect for views Professional Communication or a key worker Giving or sharing knowledge that gives control back to the parents

Cont.. Recognizing the importance of diagnosis in accessing information and understanding A multidisciplinary assessment of needs Multi – agency coordination or a care manager for the most complex cases Service that meant needs locally

GUIDELINES FOR DISCLOSURE OF DIAGNOSIS Preparing for effective communication Families and their circumstances vary enormously so professional teams need to combine their knowledge of the family in order that the news is shared sensitively and effectively Professionals need to be well prepared and trained in communication skills and confident to share bad news yet empathic enough to respond to parents 'needs

Cont… Time and space should be available for parents to reflect on the news and meet again with a member of the team if they wish. The telling should happen in a private place, without interruption from telephones and so on

Parents prefer, wherever possible, to hear the news together It may be appropriate for another family member or friend to be there in support of one or both parents. If a parent cannot be accompanied, a member of the team should be present to support the parent during and after sharing the news. When an unaccompanied parent has heard the news alone, arrangements should be made to inform the other parent and family members as soon as possible

Cont… The number of staff involved should be kept to a minimum, but the people present are less important than other factors. Senior team member, along with another professional, for example a health visitor, who will be involved in the continuing care of the child, should convey the diagnosis. If an interpreter is required, care should be taken in the selection, and a family member should not be expected to undertake this role.

Style and content Treat all the parents’ concerns seriously. Be aware of any non-verbal messages conveyed through body language and behavior before you have shared your concern with the parents. Listen to parents and share information sensitively and honestly. Use plain, understandable language and give explanations to build the parents 'confidence. Give opportunities to ask questions and check the parents’ understanding. Remember that parents may not recall much detail from the first telling of the diagnosis.

Cont.. Wherever possible, keep your discussions about the child positive. Although many parents want some idea of the future, the clinician needs to be honest and acknowledge the limitations of prediction while giving an opinion. If a baby is being discussed, try to keep the baby with the parents when sharing the findings and diagnosis, but ask - not all parents want this, and it is frequently inappropriate with an older child.

Next steps: Practical help and Information A record of the initial discussion should be made available to parents and their general practitioner. This could be in written or audio format, preferably in the parents’ first language. Contact details should be provided at the initial meeting, and parents should be encouraged to ask further questions as they arise. An early follow-up appointment should be arranged at the end of the initial meeting.

Cont… Written information should be provided at an early stage about: 1. the child’s condition 2. statutory and voluntary services 3. practical and emotional support 4. benefits. Support should be offered to parents to enable them to share the news with other family members and friends.

IMPACTOF THECHILD’S DIAGNOSIS

Key issues in disclosure of diagnosis Avoid any delay in disclosure Use a direct approach with sympathy, clarity and hope Allow time for disclosure and for questions Use a quiet private environment, and offer the parents some time alone Provide oral and written information about the child and the condition diagnosed Provide written information about early services/ agencies Provide a contact name and number, and set up an early follow-up appointment