It’s not only the persons with haemophilia — a bleeding disorder — who need constant medical and emotional help, their caregivers too need early access to support service to handle bleeding episodes, chronic pain, job status and the presence of inhibitors in the patients, psychologists and doctors say.
Ironically, haemophilia population’s need of Psychosocial Support (PSS) is underestimated due to myths, stigma and lack of knowledge.
To deliberate the issue threadbare, two-day national conference on mental health and bleeding disorders is being held here from Saturday which would be attended by health experts, psychologists and representatives from government and haemophilia sector among others.
Dr Nita Radhakrishnan, Assistant Professor, Department of Pediatric Hematology Oncology, SSPH&PGTI, Noida, explained that since haemophilia is an uncommon genetic bleeding disorder that disrupts blood clotting, patients and care givers have tough time dealing with the burden.
Caring for a child with chronic pain has a high overload, she added.
Those suffering from hemophilia have prolonged bleeding mostly in their joints. It is caused by the absence of a certain blood clotting factor in the blood.
Prolonged bleeding may occur after sustaining an injury or can happen on its own. At the conference, Vinita Srivastava from Union Health Ministry will throw light on the steps the Government is taking for the welfare of sector while Vikash Goel, President, Haemophilia Federation will dwell on country’s perspective on psychosocial support in bleeding disorders.
Neelam Kumari, nurse from SSPH&PGTI, Noida will share nurse’s role when taking care of persons with haemophilia.
Interventions to support the psychosocial needs of patients and their families, such as offering information and assistance, clarifying doubts, and teaching coping strategies to minimise the impact of disabilities, may help to maximize patient outcomes and improve quality of life for their families, said Dr Richa Mohan, psychologist and director of Empowering Minds, an organisation engaged in empowering the sector.
In fact a recent European study “The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study),” which was published in the journal Haemophilia too recommends early access to psychosocial support services to help caregivers.
Caring for a child with haemophilia, particularly when coping with poor joint health, leads to emotional stress, a changed perception of the child, and the need for more medical management, said the study. “Almost from the time of their child’s diagnosis, parents of children with hemophilia face additional stresses such as bleed recognition, treatment, including pain management and uncertainty about the future,” it said, adding that healthcare professionals “are known to have poor recognition and understanding of pain management” in children with haemophilia.
The researchers focused on the difficulties parents feel when dealing with their child’s bleeds, a time they say is marked by a “loss of control and additional stress,” particularly when hospital visits are required.
