Obligations for Reliable Alliances
In an empowered relationship, professionals have certain obligations that Turnbull and Turbull define as:
Knowing Yourself: Before nurses can work effectively with families, they need to explore their own values, beliefs, and expectations regarding disabilities, family systems, and parent/professional relationships. Some disabilities are so severe, some impairments so profound, that the nurse may unconsciously believe that the child is a burden on the family or that the child has no viable future. This attitude will certainly show up, subtly or otherwise, during the nurse’s work with the family – and it will effectively end the partnership right on the spot. On the other hand, nurses who are blase about the less visible disabilities, such as attention deficit disorder, can easily downplay the family’s concerns and cause irreparable alienation. Nurses who work extensively with families of children with disabilities should avail themselves of opportunities to attend meetings and conferences designed for both parents and professionals. In these forums, nurses can achieve a deeper understanding of what families are experiencing and can shape their own values and beliefs. Online sites for parents of children with disabilities (such as web sites cited at the end of this program) can also be extremely helpful for nurses.
Knowing Families: Family systems were discussed extensively in Part I of this Working with Families of Children with Disabilities series. The title of Part I is: Families with Disabled Children: Grieving.
Honoring Cultural Diversity: Children with disabilities are found in every race, culture, religious group, and strata of society. Nurses who ignore cultural aspects when working with families face an unnecessarily difficult and stressful road. And cultural diversity refers not only to language differences – although these differences certainly impact relationships between parents and nurses – but other cultural variations as well. It’s important, for example, to understand what the family’s culture says about parental authority, roles within the family, and communication strategies. Here are a few tips for working with parents from diverse cultural backgrounds:
- Use an interpreter and/or bicultural personnel when appropriate.
- Research and apply culture specific information.
- Communicate with key members of the cultural group in the community.
- Respect diverse views of parental authority and the roles of family members.
- Provide families with choices about their degree of participation.
- Identify potential areas of disagreement with regard to the child’s health, development, and education.
- Provide teaching materials in the family’s preferred language.
- Encourage families to express opinions openly.
- Work with other professionals to obtain the help the family needs.
Affirming Family Strengths: Professionally-led support programs for parents of children with disabilities enhance parents’ self-esteem, self-efficacy, and satisfaction. Nurses who have gained the family’s trust can be instrumental in locating appropriate support groups and encouraging parental attendance.
Promoting Family Choices: When a nurse works with a family over a period of years, the nurse will see the family making a great number of choices that affect the child’s health, development, and education. Inevitably, some of these choices will seem less than optimal to the nurse watching from the outside of the family circle. Unless the decision has significant negative implications for the child’s well-being, the nurse must learn to accept the choices made by the family. By honoring the family’s decisions, the nurse demonstrates respect and remains an active player in the parent/professional relationship. As time goes by, the nurse can certainly provide the family with updated information that may encourage them to re-visit their original decision.
Envisioning Great Expectations: When discussing expectations for the child’s future, it’s helpful to keep one fact in mind: most parents start out with great expectations for their child. Pamela Darr Wright points out, "Children enter our lives with excitement, anticipation and joy. We have high hopes and great expectations for this new life. "
Parents of children with disabilities very often take their cues from the professionals involved in the children’s care. Because children with disabilities need to demonstrate a certain type and degree of impairment in order to qualify for early intervention and special education services, it can become almost automatic to start every conversation and every meeting with a list of the child’s "issues." While it is essential that the child’s impairments be identified and addressed, nurses working with families can do a great deal to guide the parents’ perception toward one of great expectations rather than profound limitations. Simply by starting every phone call or interaction on a positive note, nurses can help guide the parents’ perspective. Think about the difference between these two opening remarks:
- "Tommy’s attention span is so very short, there’s no way he can go to a regular camp. Have you thought about a special needs camp that can keep him in check?"
- "You know, Tommy is so intrigued by swimming and outdoor activities, I’ve been exploring some special needs camps for him. Would you like to hear about them?"
Communicating Positively: Part III of the Working with Families of Children with Disabilities series will have an extensive section on communication skills for parent/professional partnerships. Within a reliable alliance, professionals have certain obligations when they communicate with parents:
- Greet them positively, rather than starting out with a litany of complaints about the child.
- Create a two-way exchange of information to actively involve the parents.
- Use the same collaboration skills and level of respect that you would with your colleagues.
- Use respectful, family-friendly language that is culturally appropriate.
- Avoid professional jargon or "talking down" to the parents.
Warranting Trust and Respect: An extensive study of health care services for children with disabilities shed some interesting light on the work performed by case managers. Families were highly critical of case managers who did not offer information or assistance unless the parents specifically requested something. They had little time or patience for professionals who were not readily available, or who lacked knowledge about programs and resources for the child. On the other hand, parents had high praise for case managers who offered appropriate and timely suggestions for medical care, financial help, information, whole family support, and parent network information. They also expressed appreciation for professionals who gave information in a proactive manner, at the right time, and in the right place.