Article Text
Abstract
Objective According to studies, Patient support groups (PSG) have shown effectiveness in improving patients quality of life, hence the recommendation to include them in patient therapeutic education programs. In Tunisia, a group dedicated to patients with Systemic Lupus Erythematosus (SLE) was created a few years ago.
The aim of our work was to assess the impact of PSG for Tunisian SLE patients.
Methods A qualitative cross-sectional study carried out in June 2023, based on a Google Forms questionnaire distributed in the Facebook group supporting SLE patients ‘Let’s talk about Lupus: Tunisia’. Answers were open and treated anonymously. Participation was voluntary.
Results 22 members participated. They were all women. The average age when participating was 38.5 years [20;67]. The duration of disease progression was 11.76 years [0.5;26]. The average group membership duration was 2.76 years [0.5;6]. Answers to the question ‘Why did you join the group?’ were: seeking moral support (n=10); better understanding of SLE (n=9); Looking for people who are going through the same experience (n=5); helping others (n=4); contributing to donations of medicines (n=1). Most reported answers on ‘how did the group help you?’ were: not feeling alone (n=12); Better understanding of SLE (n=7); moral support (n=6); encouragement and positive vibes (n=4); no help (n=3); awareness regarding therapeutic adherence (n=2); Benefiting of medicines donations (n=2). Sixteen participants double-checked medical information communicated by members on other platforms or with their doctors. For the question ‘what changed since you joined the group?’, answers were: I learned that I can live with SLE (n=13); I understood that I am not alone (n=7); Lupus varies from a patient to another (n=5), Nothing (n=3). The group limitations reported were: the negative messages and false information that can be disseminated, the lack of commitment of some of the participants and doctors. Participants’ expectations of doctors were: answering questions (n=20); correcting false information communicated by members (n=19); showing more psychological support (n=10); giving general advice on daily hygiene (n=8).
Conclusions The Tunisian PSG seems to partially meet its objectives. An active presence of the medical and paramedical professionals could support its role in awareness-raising and therapeutic education. Well-structured coordination between the group and medical societies could fullfil this need.
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