Support groups
One of the core purposes of Heart Heroes Fiji is to support our patient community. This support is vital in ensuring that people living with RHD understand their health condition and are able to live normal lives despite the challenges they face. This support is delivered in the following ways:
- hosting of group sessions for newly diagnosed patients and their carer’s/family members
- facilitating dedicated one to one session with patients or their carer’s/family members
- facilitate discussion sessions between people living with RHD and doctors/nurses
A First For the Northern Division
The Labasa Support Group was the first of its kind to be held in the Labasa Sub-division medical area. The targeted group of this event were known RHD patients defaulting on their injection schedules. In collaboration with the RHD Northern Division Coordinator, Sr. Litiana Draunibaka, we were able to plan and deliver the said event on the above-mentioned day and time. Noteworthy too was the fact that this was to be the first event to be jointly planned and delivered between the CSO Stream (CK & HHF –Erini & Marika) and the RHD Northern Division Team as well as the liaison nurses in the health centers within the Labasa Subdivision. Introductory presentations on RHD and clinical aspects was facilitated by Sr. Liti together with emphasis on RHD compliance and adherence. Also featuring the showing of YouTube video on “Benny’s Journey” as a RHD patient.
A session focusing on individual stories of each patient and their journey was facilitated by Erini and was able to capture the differing perspectives that patients and parents have on RHD and its implications on their children. Being the first of its kind to be organized in the northern division, these sessions was received with much appreciation for several reasons.
Firstly, the patient community had a lot of questions and many of them didn’t fully understand what ARF and RHD is and how to continue living with the disease. in speaking about ARF/RHD to them, we were able to go through with them the importance of their injection schedule and why they must always try to maintain it.
Secondly, this session allowed some of the very young patients to meet with other older patients most of whom have already had heart surgery and are now on medication for life. This experience and interactions between patients allowed most of our young patients to see the detrimental and long-term risks which RHD has on one’s life and is sufficient to reemphasize the importance of adherence.
Third and final, we found that the session was able to demystify the knowledge that patients have about ARF and RHD. Most of those attending the session had wrong ideas about what RHD does to the body as well as to the effects of the Benzathine Penicillin. Being able to talk about these inaccurate notions and point patients to the truth was an enriching experience.
Patients Share Their Challenges – Rotuma Island
We followed up our earlier visitations to Rotuma Island with a support group session for the patient community. The sessions allowed the patients to share their experiences in daily living with RHD and for us to talk about with them how to maintain their treatments and also to address any questions they may have. The session was also a time where our patient community could take a ‘time out’ of everything and rest and have fun for the day. Intergrated into all these were group sessions as well as one on one interactive segments allowing us to speak directly with the patients and their family members.
One of the challenges shared by them was the difficulty of travel from their own villages/homes to the health centers. Many noted that since its costly to travel during the week individually, most of them would default on their injection appointments and attend to them on the Sunday. Because Sunday is the day when most vehicles move around the island as people go to church. In speaking with carers and family members we noted some of them still had unfounded fears about RHD and addressing these inaccuracies with a simple fact session was very welcomed.
As stated above, support group sessions are vital to help people living with RHD know that they are not alone and that they can be understood by their family and community.
Patient Champions and Liaison Nurses Attend Sessions Together
Another first of its kind happened in August this year at Savusavu’s Daku Resort. We brought together Champions from our patient’s community and RHD liaison nurses from across the northern division. The two-day peer to peer program was designed to allow more collaboration and support between the patient communities and their liaison nurses in the community health centers. implemented in a ‘support group’ type, it allowed for greater discussions on the experiences of the RHD patients in response to available medical services.
The open dialogue method of facilitating these sessions helps the participants to be able to share freely knowing that everything they share will assist in improving how services are delivered in the health centers and hospital. In one of the sessions, it was highlighted that there is an urgent need for community awreness sessions. The absence of these sessions in our communities continues to leave Fijians in a vulnerable state especially our children.
Participants also had a 1-day introductory session on counselling to prepare them to in interacting with people within the patient community as well as those in the general public.
Another highlight of these sessions was it brought together individuals involved with Rheumatic Heart Disease. Previously the interactions between these participants would be limited to only moments when patients come to the health facility for their injection schedule. After these sessions we are optimistic that they will work together in facilitating community awareness sessions in the community and helping others to be more aware about ARF/RHD
