As it stands the system in Uganda means that it’s only in times of crisis that support workers are allocated and generally speaking support workers are provided by NGOs. However there is a significant lack of capacity so more often than not it is the doctors, technicians, etc. that provide post-treatment support. It goes without saying that this stretches the professional’s workload and compromises the level of support being given. Yosiah said that the system in place until 2001 was ‘sort of working’ but that there seems to be little in the way of effective follow up support now. He identified a distinct lack of aftercare.
Yosiah explained that district health officials and officers exist and that there are what is known as “Village Health Teams (VHTs)” who have access to a directory of organisations, which I think would be very important to link in to. Definitely worth trying to get them on board for resources and light steering for the community groups?
The application of equipment of those with disabilities is essential in challenging perceptions and maintaining individual dignity. Yosiah felt strongly about this but said that the caveat of which is that when coming to support groups “people will want something”. My take away from this is that the purpose of a support group would need to be clearly outlined, that the process of moving from medical treatment to support group would need to transitional where possible and ideally group facilitators would be strong advocates of the amputee community committed to the full autonomy of all group members.
I asked Yosiah if he felt there was a need for support groups to which he gave a strong yes. During an upper limb loss research project he collected data on the ‘feelings’ of amputees and used this as point reference when telling me that amputees come up against feelings of loneliness and isolation. The health and social care model current lacks the support networks to manage the mental health risks associated with limb loss. The prevalence of which was support networks with an understanding of what it is like to live with limb difference with some participants having never met another amputee.
We discussed the terminology of ‘support group’ and that fact that it has been identified that this can be off putting for many. Yosiah said that he feels Ugandans would culturally receptive to it following his experience working with amputees and in other areas of biomedical science. On an occasion when he had been asked to remotely assess the mobility of one child with cerebral palsy for a friend, he was met with over fifty mothers of children with CP. For the attendees it offered an opportunity to meet others with similar lived experience, which they don’t ordinarily get. He felt this would also be the case for amputees coming through the clinic. I suggested that it could be worth me facilitating some collaborative workshops with interested parties to discuss strategies, implementation and needs.
Similarly to the conversations being had around the kind of atmosphere fostered at support group meetings and moving away from the “chairs in a circle” format Yosiah agreed that an activity, or what her referred to as “a uniting factor”, that attendees could participate in would help group cohesion. I spoke about activities such a Boccia being very well received by the GAA as an example; this was the kind of thing Yosiah had in mind.
Yosiah felt he was well placed to begin mentioning of the concept of support groups to amputees attending the clinic so that the ball is already arriving upon my arrival and I’m not arriving with a completely new concept. The hope is that familiarity with the language and ideas will hopefully mean there is a keenness for involvement when I am in place. He also had a few patients in mind, which he believes to be good candidates for group facilitators and suggested that we look to local churches for the meeting spaces.