A roughly estimated 45% of all haemophilia patients end up with various types of disabilities owing to lack of proper care and education, making it essential for home-based caregivers to reinforce doctoral treatment by improve understanding of joint problems and disabilities resulting from constant internal bleeding.
Taking a step in this direction, an educational workshop on physiotherapy-related issues was organised at the Pakistan Institute of Medical Sciences (PIMS) here on Saturday, with haemophilia patients and their families in attendance. The workshop was the second in a series of six sessions planned under the Haemophilia Education Project (HEP) launched in February this year.
The first workshop aimed at providing basic but crucial information on haemophilia and doable home-care skills, while the second focused on sharing of information and knowledge about joint problems and resulting disabilities due to continuous internal bleeding. The need for specific exercises and physiotherapy to overcome the joint disabilities was also highlighted.
The workshop is being organised by Pakistan Haemophilia Welfare Society (PHWS), Haemophilia Centre of PIMS, and Novo Nordisk Haemophilia Foundation (NNHF).
The HEP is focused on awareness-raising, and improved preventive care to reinforce the care offered by medical doctors. The strategy includes development of effective simple-to-understand educational materials in local language, transfer of skills to patients and families for day-to-day homecare and management of emergencies among patients.
The themes for the workshops are selected from various clinical problems faced by haemophilic patients particularly those dealing with educational aspects such as basic information about haemophilia, physiotherapy, dental and orthopaedic care, bleeding disorders in women and psycho-social aspects of the disease, etc.
The workshop was divided into three sessions — plenary, educational and technical, and had Hassan Managi, Director National Council of Child Welfare, and executive director of PIMS Dr. Abdul Majeed Rajput as the chief guests. A patient Mohammad Daud shared his experience related to physiotherapy and its positive effect on his joints.
Welcoming the participants, consultant haematologist-PIMS Dr. Tahira Zafar presented a review of Haemophilia care in Pakistan and the problem faced by patients. The other two sessions focused on the educational aspects of physiotherapy. The PHPWS, which has its affiliation with the Haemophilia Centre at PIMS, is also involved in taking care of these patients.
The educational session focused on identifying problems and issues related to physiotherapy during home-care. The participants were encouraged to make suggestions or remedial measures in management of patients with possible disabilities (joint problems). The Visualisation in Participatory Planning (VIPP) methodology was used for maximum interaction. This process provided a comprehensive checklist of problems as expressed by the participants. These issues were taken special note and were dealt effectively by Dr. Farkhanda Nazli and her team of physiotherapists in the technical session.
The workshop was attended by 85 participants (45 male 40 female) — most of them patients, parents and family members of those afflicted with the disorder. The participants were divided into working groups headed by facilitator to invoke maximum dialogue. These facilitators belonged to the physiotherapy ward of PIMS.
An Urdu booklet on physiotherapy, with simple instructions on various exercises and homecare was handed out to the participants for reading; the facilitators were asked to assist in case of difficulty in comprehension. An in-depth discussion on the contents was encouraged for full understanding.
The second part of the session saw physiotherapists demonstrating desired exercises of common joints such as ankle, knee and elbow to address problems like stiffness and swelling of joints and inability to move. The participants keenly learnt the simple exercises with the assistance of the facilitators.
In the end, the workshop was evaluated to assess its impact. Like the previous workshop, the participants showed a marked difference in their initial knowledge base. They were particularly excited over having learnt various exercises. The workshop was facilitated by Yasmin Ehsan
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