Enhancing Relationships with Hospital Staff: Insights from Parents of Children with Severe Disabilities

Introduction

As parents of children with severe disabilities, navigating hospital stays can be emotionally challenging and often require a supportive and understanding relationship with hospital staff, particularly nurses. This article explores practical ways to foster positive relationships, enhance patient care, and bridge the gap between parents and healthcare providers.

Understanding the Role of Hospital Staff

Healthcare professionals, especially nurses, play a crucial role in the care and treatment of children with severe disabilities. Nurses are often the constant care providers and are essential in keeping the family informed and connected to the care process. However, managing their expectations can be a delicate balance. By recognizing their contributions and respecting their professional responsibilities, families can build a collaborative and supportive relationship.

Communicating Effectively

H2: The Power of Communication

Point 1: Plan Ahead

Proactive communication is key to ensuring smoother care for children with severe disabilities. Notify the nursing staff in advance if you need to temporarily leave for personal reasons, such as lunch or other family matters. Explain which family members will be present and when you will be back. For example, instead of surprising the nurse with a sudden absence, inform them that the whole family will be leaving early, giving them time to plan care for your child.

Point 2: Coordinate Care Needs

To help nurses manage their responsibilities, keep them informed about your child's specific care needs. Share important details about medications, dietary restrictions, and any other concerns. This will enable the healthcare team to provide more personalized and attentive care. For instance, if your child requires a certain tube, ensure the nurse is aware of this so that it is in place and secure before you leave.

Embracing Independence

H2: Balancing Parental Involvement and Independence

Point 1: Respect the Family's Perspective

Parents often feel the need to be constantly present, which can lead to empathy and understanding from the nursing staff. However, recognize that your child can benefit from time without constant parental supervision. Encourage family members to take breaks and spend time apart, which can be beneficial for both the child and the parents. As one parent shared, 'My child once told me she wished her mom didn’t come to the hospital every day because she needed space from her motherly fussing and wanted to spend time with her dad.' This can lead to a healthier environment for the child’s emotional well-being.

Point 2: Addressing Emotional Needs

Some children, like the 9-year-old pediatric oncology patient, may express feelings of emotional isolation. It is important to listen to your child's concerns and work with the healthcare team to address them. For instance, when a child expresses feelings of dying and a desire to go home, it is crucial to involve the medical staff. In one compelling case, a nurse patient in pediatric oncology, James, expressed his wish to return home to die rather than remain in the hospital. By collaborating with his oncologist, James was granted a summer at a cottage and eventually passed away on Labour Day, leaving a lasting impact on the nurse who cared for him.

Building a Collaborative Relationship

H2: Fostering Collaboration and Trust

Point 1: Share Personal Experiences

Sharing your personal experiences can help the nursing staff understand the unique challenges faced by your child. This can lead to a more compassionate and empathetic approach. For example, discussing the specific needs of your child, such as dietary restrictions or special medical equipment, can help the nurses better care for them.

Point 2: Provide Support Beyond Medical Needs

While the medical care is crucial, emotional and social support is equally important. Some children may need extra space and understanding during their hospital stays. By working together, you can ensure that your child receives comprehensive care that addresses all their needs.

Conclusion

Building a positive relationship with hospital staff, particularly nurses, is essential for the well-being of children with severe disabilities. By understanding the roles of healthcare professionals, communicating effectively, and embracing a collaborative approach, parents can create a supportive and healing environment for their children. Every voice counts in the care process, and by fostering a partnership with the medical team, families can ensure their child receives the best possible care.