Excerpted with permission from Chapter 3, by Vivian Gedaly-Duff, D.N.Sc., R.N., Susan Stoeger, R.N., and Kathleen Shelton, P.N.P., M.N., R.N., of The Physician's Guide to Caring for Children with Disabilities and Chronic Conditions, edited by Robert E. Nickel, M.D., & Larry W. Desch, M.D.

Copyright © 2000 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Primary care family interventions may be needed during transitions through each family developmental stage; in each phase of the child’s illness or disability; according to each family member’s individual developmental needs; and in situational transitions related to the medical, educational, and social needs of the child with a disability or chronic condition.

Educate the Child and Family about the Child’s Disability or Chronic Condition

Explain to the child and the child’s family the relationships between the signs and symptoms the child experiences and the child’s disability or chronic condition. Include a description of how the tests help in interpreting the child’s situation. Tell the family which signs and symptoms indicate that the condition is improving or worsening. The following are further protocols to follow in caring for families of children with disabilities and chronic conditions:

• Review the effects that the child with a disability or chronic condition may have on other family members (e.g., stress on parents, siblings, grandparents, friends).
  
  
• Discuss developmental issues related to the child’s disability or chronic condition (e.g., mobility).
  
  
• Discuss the natural history of the disability or chronic condition and appropriate expectations of family members (e.g., how the disability or condition will eventually affect the child’s self-care and independent living).
  
  
• Review the diagnosis and treatments with the child or with other appropriate family members (e.g., siblings).

Anticipatory Guidance

• Prepare family members for altered developmental transitions (e.g., transition from ECSE to kindergarten).
  
  
• Discuss chronic sorrow “flare-ups” during typically expected transition times (e.g., lack of expected school achievement).
  
  
• Discuss situational transitions as needed (e.g., change in jobs, moving, switching to new caregivers, divorce of parents).
  
  
• Discuss adolescence issues (e.g., sexuality, birth control, encouraging healthy behaviors).
  
  
• Encourage families to promote social competence, self-care, and individual responsibility in their child with a disability or chronic condition.
  
  
• Prepare for the transition of the child with a disability or chronic condition to independent living and adult services.
  
  
• Determine which supports and adult services will be needed for the child’s transition to independent living.
  
  
• Discuss child’s likely degree of dependency and begin guardianship discussions (e.g., with a lawyer) and financial planning for the future of the child with a disability or chronic condition.

Family Support and Advocacy

Explore the family’s resources and connections with the community. Providing family support and advocacy can be accomplished in the following ways:

• Assist the family to meet another family with a child with a similar disability or chronic condition.
  
  
• Link the family with community resources (e.g., EI/ECSE services, respite care, advocacy groups, parent groups, sibling programs, recreation resources, organizations specific to their child’s condition), and advocate for the family with those organizations and agencies.
  
  
• Be an empathetic listener, and allot sufficient time to meet with the family during office visits.

Referral to a Mental Health Professional

Consider referral of the family to a mental health professional when the following circumstances arise:

• The couple experiences marital conflict.
  
  
• Family problems develop that are based on strong emotional conflicts that cannot be resolved.
  
  
• Family members fixate on only one “right” way to manage a problem.
  
  
• Family members interact in a fixed, rigid pattern, particularly when two family members side against another family member (Heiney, 1999).

Fathers’ Involvement in Clinic Visits

Linder and Chitwood (as cited in King et al., 1996) offered the following suggestions to increase the involvement of fathers in primary care office visits:

• Schedule appointments to fit fathers’ schedules.
  
  
• Provide clinic services in the evenings and on weekends so that fathers can attend.
  
  
• Have father-and-mother conferences so that fathers do not have to rely solely on secondhand information via mothers for information from the clinic.