Posted on August 25, 2018

A 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 children'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 children'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 specialised care for children who have complex, long-term health conditions. The unit cares for children aged three months to 14 years, 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 programme designed to help long-term ventilated children live at home. The programme has seen a number of children who had been hospitalised, in some cases for many years, safely transitioned back into the community and visiting home frequently.

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 programme, 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 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 added it has become an important source of encouragement and knowledge.

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 further said it has become an effective way for care teams and parents to ask questions and share information about meetings, upcoming activities and events organised by the unit, such as celebrations for National Day, Mother's Day and birthdays. 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 said the support group has been a blessing that has enabled her to take a more active role in the care of her child. 

Dr Reem Babiker Abdalla Mohamed, general paediatrics consultant at Al Maha I, said 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. "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.

source: Qatar Tribune