Inclusive and Supportive Education Congress International Special Education Conference Inclusion: Celebrating Diversity? 1st - 4th August 2005. Glasgow, Scotland

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Minimizing the feelings of isolation of families of
newly diagnosed  infants in a hospital setting

Susan P. Gregory Ph. D,
Associate Professor, Montana State University-Billings, Montana, USA
sgregory@msubillings.edu

Molly Mills, Family Support Consultant, Parents Let’s Unite for Kids, Montana, USA
mmills@pluk.org

When a newborn is diagnosed with a condition which is likely to lead to developmental delays, hospital-imitated early intervention programs can minimize the family’s feelings of isolation. This presentation describes the role of the family support consultant in such a program and how she provides support to families in a hospital Neonatal Intensive Care Nursery (NICU) in Billings Montana, USA.

Parent Information and Training Centers

In the United States, Parents Information Centers are integral part of service delivery to families with children with disabilities. 1975 saw the first law in the United States designed to provide special education services in public schools. This law, the Individuals with Disabilities Education Act, also provides for children to receive special education early intervention services from birth, at no cost to the family. This same law also provided funding for Parent Information and Training Centers to be developed. Throughout the country, states developed centers for families with children with disabilities. These centers provided training for families on their rights under the law. In Montana this center is called Parents Lets Unite for Kids (PLUK). As Montana is a largely rural state, the information that it provides for families is through publications and through internet based training.

PLUK’s main office location is in Billings which is the largest city (population approximately 90,000) in the state. One of PLUK’s staff has worked with hospital staff to develop a program based in the hospital setting to provide services to families in that setting. Molly Mills, is a family support consultant with PLUK. Her position combines parent and professional training, access to information and resources and parent support.

Family Support Consultant’s role

The role of the family support consultant in the hospital setting is to:

• provide emotional support to the family
• provide practical suggestions to the family
• facilitate communication and information between the medical and allied fields

This role can begin when a prenatal diagnosis of illness or disability is confirmed by a perinatologist. The staff from the perinatologist’s office will, with the parents’ permission, make a referral to the family support consultant. More typically she will meet with a family when an infant is admitted into the neonatal intensive care nursery (NICU). This occurs after a delivery or after an infant is admitted due to an emergency air flight. At that point her role involves helping the family adjust to a very stressful environment.

Families are sometimes less threatened by the presence of a support person whose role is non-medical. If a social worker is available, and if the parent requests, they will also become involved at this time. All infants admitted to the NICU are considered to be at some degree ‘at risk’. Sometimes an infant will be born with a disability condition or in extremely fragile health. Some babies are admitted to the NICU with a birth weight hovering around one pound. Most of the infants who are admitted will do well but that does not diminish the immediate crisis for the family. Regardless of the outcome, the admittance of a newborn into an intensive care setting always represents the loss of a family’s hopes and dreams and feelings of isolation. The medical staff faces the immediate medical emergency with the newborn. The family support consultant assists the family with practical and emotional support.

The PLUK family support consultant is bound by the same confidentially policies as the hospital staff. Families are at an especially vulnerable state when the family support consultant meets with them. Unless there is a concern for the welfare of the infant at the hands of a parent or an immediate safety concern for a parent-it is unnecessary to provide detailed record of communication on the medical chart. Most concerns the families express can be communicated information to the doctors, nurses or other appropriate professional. All information given by parents is considered privileged and can only be given to another agency (as in the case of referrals) with the permission of the family.

Emotional support

The family support consultant can provide immediate support as indicated or ongoing support when requested. As a non-medical person she can be perceived as less intimidating than medical staff and as a parent herself she can affirm the family’s emotions. She has the credibility of someone who has ‘walked in their shoes’. In addition she can provide support to them when dealing with reactions of family members and friends.

Practical support

The family support specialist can provide information on hospital routines and procedure; she can be a voice for parents who are uncertain about what questions to ask medical staff. She can provide information on the day to day aspects of taking home an infant who is preterm or high risk. Parents are often overwhelmed when faced with the medical complexities of their infant’s condition and the family support consultant can offer practical suggestions on relating to their baby, in ways in which all parents connect to their newborns.

Parents will typically want information on their infant’s condition and the family support consultant can provide ready access to information from the Parent Information and Training resources. These resources are in non medical terminology and can include lists of local and national organizations, websites, and books relating to their infant’s condition.

 Referral to early intervention services and other community organizations is another avenue that the family support specialist introduces to families. It is widely recognized that stress can interfere with a parent’s ability to assimilate information (Hadden, 2000). Presenting the information repeatedly and in different formats can be helpful to families.

Facilate communication and information

The family support consultant provides training workshops for hospital staff and community agencies serving infants and toddlers with disabilities. The training assists medical staff in understanding the experiences of families, communication strategies when working with these families and the community resources available to families when they leave the hospital.

The role of the family support consultant is multidimensional. She acts as a bridge between the medical staff and the family and the hospital setting and community organizations. As a parent she can relate to the family’s needs and as a professional she can provide resources and links to community agencies.

References

Hadden. D. S. (2000). The long anticipated day: Strategies for success when a premature infant comes home from the neonatal intensive care unit. Young Exceptional Children, 3, 2, 21-26.

Web sites

www.pluk.org Parent’s Let’s Unite for Kids. Montana’s Parent Information and Training Center.

www.zerotothree.org Zero to Three is a national organization of resources for parents and professionals interested in infants and young children ages 0-3.

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