Posted on August 05, 2018

Thought to be the first of its kind in the region, a mother’s support group launched last March at Hamad Medical Corporation’s (HMC) Rumailah Hospital is enabling the parents of children with long-term medical conditions to take a more active role in their child’s care. The initiative has provided a platform for the mothers of patients at the Al Maha Children’s Unit 1 to have direct access to their child’s care team and to receive support from other parents.

The Al Maha Children’s Unit at Rumailah Hospital, known as Al Maha I, was established in 2010 to provide specialized care for children who have complex, long-term health conditions. The unit cares for children aged three months to 14 years of age and the length of stay for each child admitted to the unit varies from months to years, depending on their diagnosis. Many of the patients cared for at the 26-bed long-term care facility have their breathing supported by a mechanical ventilator. The mother’s support group is the latest initiative by staff at the facility aimed at improving both patient care and experience.  In 2016, the staff at Al Maha I implemented a successful program designed to help long-term ventilated children live at home. That program has seen a number of children who had been hospitalized, in some cases for many years, safely transitioned back into the community and visiting home frequently.

Ms. Mariam Nooh Al Mutawa, Executive Director of Nursing at Rumailah Hospital, said the mother’s support group is unique to the Gulf region and aligns with HMC’s vision of providing collaborative and supportive patient care. “The support group was introduced as part of our commitment to promoting open communication between the parents of our patients and our nursing and medical staff. As part of the program, the mothers, and other family members of new patients are given a comprehensive orientation which includes a tour of our facility and introductions to all staff. They are told about the support group and are encouraged to ask questions, voice concerns, and provide suggestions,” said Ms. Al Mutawa.

She said one of the reasons the support group has been so well received is because of the peer support it provides for families. She said it has become an important source of encouragement and knowledge. “Many of the families of our patients take a very active role in their child’s care. Caring for a child with complex care needs can be a very isolating and all-consuming experience and the support group has provided an important outlet by connecting the parents who may be dealing with many of the same challenges,” said Ms. Al Mutawa.

Ms. Lilykutty Joseph, Head Nurse at Al Maha I, said that since the mother’s support group was initiated, it has been expanded and now includes a WhatsApp group that connects parents, nursing staff, and medical teams. She said it has become an effective way for care teams and parents to ask questions and share information about meetings, upcoming activities and events organized by the unit, such as celebrations for National Day, Mother’s Day, and birthdays.

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One of the first members of the support group was the mother of a four-year-old girl with spinal muscular atrophy, a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Her daughter, who was diagnosed at four months of age, received treatment abroad before being transferred to Al Maha I. She says the support group has been a blessing that has enabled her to take a more active role in the care of her child. She said the group has also provided a lot of emotional support by connecting her with other families who have faced similar experiences and challenges.

Another support group member, the mother of a two-and-a-half-year-old boy with speech and movement disorders, says navigating the healthcare system to access services for a child with long-term medical needs can be confusing.  Her child requires long-term mechanical ventilation due to breathing difficulties and she said working with the various service providers, such as Rumailah Hospital, the Ambulance Service, and Home Healthcare Service, has been overwhelming at times. She said she is grateful to the group, noting there is always someone available to answer her questions and listen to her concerns. She said the group has helped her to feel empowered and less isolated.

Dr. Reem Babiker Abdalla Mohamed, General Pediatrics Consultant at Al Maha 1, says parents are one of the most important members of a child’s care team, adding that the mother’s support group has opened up the lines of communication between care teams and parents. “The mother’s support group was established to strengthen the relationship between our doctors and nurses and the families of our patients. It has provided an important avenue for asking questions, voicing concerns, and working together to find solutions to the challenges encountered. Ongoing communication between parents and the multidisciplinary team is essential, but this is especially true when caring for patients who have complex health conditions, and even more so in cases where a patient is transiting from hospital-based care to the home,” said Dr. Mohamed.

Dr. Mohamed explained that in cases where patients are being weaned off of mechanical ventilators and transitioning to home-based care, multidisciplinary teams work closely with parents to ensure the transfer is safe and seamless. She said when it is clinically appropriate; transitioning a child from the hospital to home can significantly enhance their quality of life by allowing them to participate more fully in family life and potentially attend school.

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