1.1

Introduction

Buruli ulcer (BU) is an emerging disease caused by the bacteria Mycobacterium ulcerans (Mu). It occurs in endemic areas in countries with tropical and subtropical climates (Africa, Southern America, Asia and the South Pacific ). Even though the mortality rate for BU is very low, the real issue lies in delayed treatment which may cause long-term functional disabilities and impairments as well as restricted participation in 25% of cases according to the WHO . These impairments and disabilities, in various degrees of severity, linger in patients cured of BU even when physical rehabilitation was part of the therapeutic array . Managing their impairment and disability within their living environment has become a real issue for former patients. Furthermore, even though physical rehabilitation was recognized as an essential part of BU treatment, no study has ever focused on this issue. This study explores the psychosocioprofessional and family repercussions of BU in former patients within their home environments.

1.2

Patients and study methods

1.3

Results

1.3.1

Demographics

1.3.1.1

Age

The mean age of patients in our study was 8 years (range: 6–89 years), 57% ( n = 139) of patients were children under the age of 15; there were very few elderly patients with 0.81% ( n = 2). Fig. 1 shows the repartition of patients according to age ranges.

Diagram showing the repartition of subjects according to different age ranges.

1.3.1.2

Gender

Among the patients, 50.4% were men and 49.6% were women. The sex-ratio was 1.01. In children, boys were predominant with 65.5% ( n = 91).

1.4

Discussion

Patient repartition according to age shows that BU affects all ages (6 to 89). The mean age of patients in our series was 8 years and the great majority, i.e. 57% of them, was younger than 15 years old. Children seems the most exposed to BU. This could be explained by the fact that they play and swim frequently in rivers and water holes. Furthermore, the frequent wounds incurred by children when playing are an entryway for M. ulcerans . Most authors who worked on BU came up with similar results and explanations . Some authors put forward the weak immune system of these children , while partly true, this explanation is up for discussion since the elderly, who also have a weaker immune system are scarcely affected by the disease 0.8% ( n = 2).

In our study, the population included 50.4% of men and 59.6% of women with a sex-ratio at 1.01. Our results did not highlight any gender predominance. The exposure to the disease, climate and environmental factors are the same for both genders. In spite of these elements, these results remain intriguing as we were expecting a predominance of male patients. In fact, boys are rowdier, more curious and tend to play more in the water and thus end up being more affected (65%) in the below 15 years age range, whereas in that age range girls (35%) are more protected by their parents and do not play rough games. Our results are similar to those reported by Sopoh et al. , Josse et al. and Asiedu et al. . Barker and Kadio brought up higher rates in girls than boys in Ivory Coast. Conversely, Van der Werf reported higher rates in men than women in Ghana.

Results analysis from Table 1 showed that more children (60.4%) believed BU to be a natural disease versus those who attributed it to witchcraft. In the group of adolescents and adults, more patients believed BU was due to witchcraft with 52.4% of adolescents and 69% of adults. Overall, for all patients attributing the disease to witchcraft (50.8%), more than 55% of them were adolescents or adults. This tends to show that as they get older, patients are more influenced by the dominant African conception of the disease. In fact, childhood is the age of innocence and believing in natural phenomena. Furthermore, we believe that the therapeutic education given to children regarding BU transmission, physiopathology and clinical symptoms as part of Communications for Behavioral Changes (CBC) during their hospital had an impact on their conception of the disease. School also contributed to their natural conception of the disease. However, with age, life experience, elements of information received from all sources and the increasing influence from environmental factors, patients become more sensitive to society’s interpretation of phenomena. In sub-Saharan Africa, the onset of disease or death is often attributed to supernatural causes. In fact, at first patients believe that the disease originates from an anthropomorphic power: sorcerer, genie, ancestor or God himself then secondarily they recognize that the disease stems from a noxious agent perceived as natural: environment (influence of the climate, ecological conditions and social environment) . These considerations often delay the moment when patients finally decide to see a doctor. Fortunately, this African conception of the disease did not have an impact on the psychosocioprofessional and family life experience of these former patients. Overall, very few patients felt guilty, regardless of age. In fact, more than 90% of patients ( n = 220) did not feel any guilt (86.3% of patients). Should this result be linked to the African conception of the disease? It is true that if the onset of the disease is due to an invisible ominous force, as underlined by the African beliefs, there can be no guilt.

Being hospitalized was reported as a poor experience by most patients (more than 70%) regardless of age. This result is not surprising when we understand the poor hospitalization conditions in Benin where numerous patients have to share a very small room. Regardless of the habitat, people in Benin prefer to live at home. A hospital stay means that patients and family members supporting them have to stop working. Thus difficulties arise and linger on for fulfilling basic needs such as eating, housing, etc. Direct and indirect costs of BU treatment in the hospital are hard to manage, even impossible sometimes, in spite of the various subventions from welfare organizations. These results are similar to those reported by Johnson et al. and Stienstra et al. .

Family acceptance was high in the four different age ranges. This can probably be explained by the legendary African solidarity, which, in spite of its weakening in large cities, is a true reality in the countryside where BU is predominant.

Finally, regarding the psychological experience, more adolescent patients reported being diminished (52.4%) than anxious or depressed (both at 23.5%). This is understandable since adolescence is an age where patients are overly conscious of their body image, and when the body has changed and bears unsightly skin marks, one can truly feel diminished compared to his or her peers.

There were also more adults who were diminished (48.9%) than depressed (31.7%) or anxious (19.5%). There were fewer anxious adults. The reasons listed above could explain why there were more adults feeling diminished than depressed or anxious. Overall, looking at the three categories of patients who answered the questionnaire, there were more patients feeling diminished. This could be due to the debilitating consequences of BU and heavy financial costs related to its treatment and care, which sometimes ruined these former patients. There is a difference between adults and adolescents, in fact adults were more depressed and adolescents more anxious. For adolescents, the issue of a professional future is at stake, thus their growing anxiety. But when an elderly patient is anxious there can be many reasons. For adults, the issue of rebuilding their life and getting back to work can trigger depression.

BU is a disease requiring a constraining treatment and lingering physical consequences after the cure, it induces a growing poverty and psychological regression requiring the permanent help of family members. These elements show that a systematic psychotherapy should be proposed as part of the care management of these patients during their hospitalization and once they have returned home. On a professional level, 81% of workers ( n = 68) went back to work; out of patients who returned to work, 75% of them ( n = 51) went back to the same job and 25% ( n = 17) changed jobs. After being cured of the disease, patients had to face their obligations. Beninese people really pride themselves in being independent; this could explain the high percentage of former patients returning to work, furthermore 75% kept the same job due to foreseeable difficulties in changing jobs. The fear of not being able to succeed in a new job for which they received no training combined to the attachment to their old job could explain this high rate. Impairments and limitation of participation, both consequences of BU, were not enough to affect the motivation of these dedicated hard workers. The 25% of former patients, who had to change jobs, did it for two reasons:

• •
  

  the first was functional impairments and limitation of participation. These patients wanted to work despite their impairments, which were not as severe as other patients;

  
  
• •
  

  the second reason was that their previous job required being in contact with water and thus there was a risk of BU recurrence. These patients had to stop their professional activities and change jobs, often for lesser money but their new activity was better suited to their new lives.

The psychological experience of dealing with BU had a statistically significant impact on the socioprofessional and family life of former patients ( P < 0.05) ( Table 2 ).

For the 19% of patients who did not get back to work, reasons stated were: impaired capacities in 13.1% ( n = 11) of cases, pain and lack of support in 5.9% ( n = 5) of cases.

These results show the lack of a real politic for social and professional reinsertion in our country. According to Autier in a context of endemic unemployment, the reinsertion of persons with reduced capacities for work and heavy efforts, because of long-lasting health issues or consequences, can seem quite risky.

Regarding education, 90.1% of students in school/high school/university went back to school and 29.4% ( n = 40) had a normal academic progression, 45.6% ( n = 62) lost 1 year, 17.6% ( n = 24) lost 2 years and 7.4% ( n = 10) lost at least 3 years. We saw then that 70.6% of children lost at least one school or university year. These results could be explained by the following reasons:

• •
  

  children and students frequently missed class because of the antibiotics therapy lasting at least 8 weeks and bandages care;

  
  
• •
  

  hospitalization duration (at least 3 months), surgery and functional rehabilitation required time away from school.

We expected the number of children with lost school years to be less, because of several BU medical care centers in each endemic zone. Yet, there is hope since 29.4% of these school children and students had a normal academic progression thanks to early screening and care management next to their homes.

Upon getting back, 63.2% of school children were well accepted by their schoolmates ( Table 4 ). This result shows the real solidarity of the African people. The 36.8% of rejected patients could be explained by the young age of these schoolmates, fear of being infected when playing with cured children because of the unsightly and voluminous scar, a common consequence of BU. Some efforts still need to be made to ensure proper social and school reinsertion of these children. There is a real impact of schoolmates’ acceptance on the academic progression of former BU patients with a statistically significant difference ( P = 0.001). For the 9.9% of patients in school who did not go back to school or university, the two main reasons were: firstly, impaired capacities and lack of support and, secondly, fear of BU recurrence. Some children had to cross a river to get to school and others feared getting injured during recess. In order to address the very important issue of academic delays, in 2007 a primary school was built within the Allada CDTUB. However, the proportion of children who fell back at least a year remains quite important. The most determinant factors seem to be negligence from patients and/or family members, lack of information and absence of synergy between sanitary and school activities. Stienstra et al. in a study on BU patients who did not benefit from physical rehabilitation, reported that being a woman, older age, joint affections, lesions on the lower limbs were all factors influencing functional impairments and financial restrictions, the latter being at the root of work and school difficulties. On a family level, 3.3% of patients ( n = 8) got married after being cured from the disease. These patients were in the right age range to get married. Consequences of BU, i.e. unsightly scars, limitation of capacities and restricted participation did not prevent these patients from getting married. This shows that love is stronger than disability and/or physical scars. However, one patient (0.4%) was abandoned by her husband and experienced a divorced after the disease. The first cause of this reject was the prolonged absence due to repeated hospital stays; the second reason was related to the severe impairments and limited range of motions lingering for this patient. Furthermore, 31.6% of patients could not fully assume their role as a spouse, parent or children, psychological experience was the most influencing factor ( P = 0.008). Restricted abilities and participation limitations were the first causes in addition to late postoperative pain.

Similar observations led Phanzu et al. into thinking that in spite of encouraging results, it was essential to implement new strategies to improve the fight against BU for patients living in precarious conditions.

1.5

Conclusion

The physical consequences of BU for cured patients once they get home bear heavy psychological, social, professional and family repercussions. It is urgent to implement a well-structured psychosocioprofessional reinsertion program, with a large part devoted to psychotherapy, in order to offer a proper follow-up for these former patients in their home environment.

Further studies will be able to refine the necessary parameters for a real ecological rehabilitation of these former patients.

Disclosure of interest

The authors declare that they have no conflicts of interest concerning this article.

2.1

Introduction

L’ulcère de Buruli (UB) est une maladie émergente due au Mycobacterium ulcerans (Mu). Il sévit sous forme de foyers endémiques en zone intertropicale (Afrique, Amérique, Asie et Océanie ). Bien que l’UB n’entraîne qu’un faible taux de mortalité, le véritable problème vient des restrictions de capacités et des limitations de participation qu’il provoque dans 25 % des cas selon l’OMS . Ces incapacités et handicaps persistent à des degrés divers chez des patients déclarés guéris d’UB même avec l’introduction de la rééducation dans l’arsenal thérapeutique . Le problème de la gestion de leur invalidité au sein de leur milieu d’origine se pose et aucune étude ne s’y est intéressée depuis que la rééducation a été reconnue comme pilier incontournable du traitement de l’UB. Cette étude examine le devenir psychosocioprofessionnel et familial des patients guéris d’UB après leur retour à domicile.

2.2

Patients et méthode d’étude

2.3

Résultats

2.3.1

Données démographiques

2.3.1.1

Âge

L’âge moyen des patients de notre étude a été de huit ans. Les enfants de moins de 15 ans ont été les plus nombreux avec 57 % ( n = 139) ; les personnes de troisième âge les moins représentées (0,81 %, n = 2) ; les extrêmes étant de six et 89 ans. La Fig. 1 illustre leur répartition selon les tranches d’âge.

Only gold members can continue reading. Log In or Register to continue

Share this:

• Click to share on Twitter (Opens in new window)
• Click to share on Facebook (Opens in new window)

Related

Related posts:

Should abstracts for rehabilitation congresses be subject to more rigorous selection? Interest of rehabilitation in healing and preventing recurrence of ankle sprains Analyse de livre Rehabilitation of 190 non-ambulatory children with cerebral palsy in structures of care or in liberal sector Walking tests during the exercise training: Specific use for the cardiac rehabilitation Gait characteristics of post-poliomyelitis patients: Standardization of quantitative data reporting

Stay updated, free articles. Join our Telegram channel

Join