Barriers to “continence promotion” in the Middle East

1. Barriers to “continence promotion” in the Middle East Dr Vasan S S UroAndrologist Director- Ankur, Bangalore Head - Dept of Neurourology & Incontinence Director- Manipal Andrology & Reproductive Services (MARS)

2. Incontinence • The involuntary leak of urine constitutes a major urinary disorder in the community • Important in the medical community, but • Perception and management by family physicians • is still largely inadequate • Incontinence can lead to decreased physical and psychological well-being and to social problems. • (Teunissen TA et al)

3. The experienced emotional consequences and physical limitations vary between people, with not all patients seeking help • Ageing of the population of immigrants can be expected to lead to more cases of urinary incontinence • (Lagro-Janssen TLM, Teunissen TAM et al)

4. Very few Muslim women consult their GP because of incontinence • From studies on Muslim women and migrants in general, we can surmise that they will be more ashamed of incontinence, suffer different consequences in their daily lives and have to overcome more barriers to seek and accept help than indigenous western European women • (Saleh N, Rizk, Wilkinson K. Et al)

5. Sample, 562 subjects (70.4%) believed that UI was abnormal and worth reporting to a doctor • Coping mechanisms among incontinent women included frequent washing (58.3%) and wearing a protective perennial pad (42.4%), changing underwear frequently (41.3%), decreasing fluid intake (19.8%) and stopping all work (4.9%) • Sufferers were most troubled by their inability to pray (64%) and their marital relationship (47%), limitation of their social activities (20%), difficulty in doing housework (14%) and inconvenience during shopping (13%) • Most (71.9%) of the incontinent subjects were self-conscious, ashamed of themselves and troubled by guilt (P < 0.001); 56% found it most embarrassing to discuss UI with their husbands • The majority of women (51.9%) believed child birth to be the major cause of UI, followed by ageing (49.5%), menopause (34.2%) and paralysis (25.3%)

6. Treatment Methods for Incontinence by Family Physicians • # Pelvic Floor Exercises 14% • # Professional Advice 8% • # Behavioral Therapy • Professional Advice • Pelvic Floor Exercises 38% • # Drug Therapy 44%

7. Women adhered closely to bodily cleanliness & considered incontinence to be dirty

8. As Muslims, they were obliged to perform ritual prayers preceded by ablution five times per day and the urinary incontinence breached their status of ritual purity

9. They have to wash more often & experienced this as a heavy burden • In a number of the women, shame formed a reason why they could not talk to anybody about the incontinence, not even with the doctor

10. Urinary incontinence has a huge impact on their daily lives as it breaches their status of ritual purity • Half of the women were deeply ashamed - did not visit the doctor • Shame on the part of the patient and miscommunication – the doctor - to inadequate care • One-third of the women felt - GP had not taken them seriously • Knowledge - anatomy, physiology & available treatments was mostly lacking

11. In addition, women did not understand the aim of the exercises from physiotherapist. • The majority of women preferred help from a female doctor

12. Devout Muslims have to perform ablutions (Wudhu) before each of the ritual prayer sessions prescribed at five set times each day (as-Salaat) • The majority of the study group (n = 25) reported that in the past, they had been able to complete several of the prayer sessions with one and the same ritual purification, whereas now, they had to repeat it every time • The ablution is no longer considered to be valid after passing urine, vaginal discharge, faeces or flatus from the genital organs or anus • Consequently, the incontinence was affecting their worship of the Islam faith

13. I can't guarantee that after ablution I will retain the state of purity • Having to wash myself 5 to 7 times a day is really starting to get me down • Sometimes I can't pray because there is nowhere I can wash

14. Before praying your body and underwear need to be really clean. • How can I do that when I'm staying with other people? That I find really difficult.’ • ‘A man wants a healthy wife who also wants sex. • ‘I am getting really fed up with having to wash myself and change my clothes all the time, these are the biggest problems.

15. They believed Allah had sent them this condition - they owed it to Him to seek the best possible treatment. • is qadr, predestinated

16. According to three of the four large Islamitic Schools of Jurisprudence (Shafi'i, Hanafi and Maliki), a prayer is not valid without prior ablution • For medical reasons, Muslims do not have to follow all the prescriptions in some situations, such as Ramadan for example • Therefore, it was felt that it would not be inconceivable to also excuse (Ma'zur) women with urinary incontinence

17. Solutions • To develop a system to help the sufferer understand incontinence and its consequences and the treatment options • This could be done by establishing a national multidisciplinary & consumer committee that will develop and issue standardized incontinence care guidelines • A preliminary consensus conference will be the basis for the development of guidelines • Another important strategy for this issue also discussed is the establishment of local multidisciplinary continence clinics, interest groups, & outreach programs

18. To bring diverse groups together (general public, community organizations, business, healthcare providers, individuals with incontinence, government) in partnership to make incontinence a priority health issue in terms of resources and focus • Working with other organizations such as seniors' groups, fitness, pre & post-natal, menopause, disability, women’s & wellness promotion organizations, will facilitate the efficient broadening of public education and sensitization to the issue of incontinence • Disseminate general information leaflets on incontinence

19. To improve public knowledge about incontinence is devising guidelines for industry to improve accuracy and effectiveness of advertising content • Releasing accurate and authentic information to reach the public through TV, magazines and industry brochures • These vehicles represent important media through which to reach the public on an ongoing basis with key high-impact messages about incontinence

20. Professional knowledge • To improve knowledge about incontinence (e.g. medical, nursing, physiotherapy, pharmacy, social workers) and develop continence as a care requirement for all major facilities • Developing important messages which will help increase professional sensitization to this issue, and which would appear continuously in professional publications

21. Issuing guidelines for doctors on management 1. To ask for incontinence

22. Incontinence Physicians don´t ask and Patients don´t tell Spontaneous reporting age group 65-74 48 % age group 75-84 68 % Especially younger people don´t report spontaneously

23. Problem 1: the doctor doesn´t ask the patient doesn´t complain Aim • To increase awareness for incontinence amongst doctors • To convince the doctors that he is capable to deal with incontinence

24. Issue guidelines in the management of incontinence ? 1. To ask for incontinence 2. If the patient reports incontinence• To perform a basic assessment  type of incontinence  potentially reversible conditions• To decide whether to initiate therapy or to refer to the specialist

25. Management of incontinence Problem 2: poor knowledge how to manage incontinence Aims • To increase knowledge  basic assessment

26. Management of incontinence Basic assessment • History / Symptoms • Clinical assessment • Urine analysis • Postvoid residual urine assessment • Bladder diary

27. Management of incontinence Problem 2: poor knowledge how to manage incontinence Aim • to increase knowledge  basic assessment  how to manage incontinence in an outpatient setting

28. Management of incontinence Problem 3: Time spent • Normal consultation 3 - 5 min • Extented consultation 11 - 15 minsmall children, elderly people

29. Management of incontinence in an outpatient setting •Also specialists e.g. urologists and gynecologists do forget to ask for incontinence • Even they do not realize that within the group of patients with incontinence 30 % are unrecognised and only treated for other diseases

30. Continence Awareness Days GPs are informed and invited to get an update on incontinence the days before / during an evening seminar Evening seminars could be organised on a district basis in cooperation with the local Board of Doctors

31. Evening Seminars on Incontinence for in collaboration with the local Board of Doctors Topics • Epidemiology of incontinence • Basic assessment how to take history, to aks for symptoms, main steps of clinical investigation, urine analysis, bladder diary, assessment of residual urine

32. Management of incontinence • Networking of doctors with specialists • A short Manual on basic assessment and basic management of incontinence • Incontinence Tool Box for the doctors - GP • •Manual on management of incontinence • • bladder diary • • urine measuring flask • • video on pelvic floor training • • List of specialists and physiotherapists interested in incontinence therapy + training centres

33. Management of incontinence in nursing homes and homes for the elderly •Most of the management is done by the nursing staff • Pads are the first choice of management

34. Management of incontinence in nursing homes and homes for the elderly •Toiletting or micturition training is rarely provided • Due to a lack of knowledge especially on the doctors side • Due to shortage of personal on the nursing side

35. What needs to be done to improve management • Providing better education on the students- and postgraduate level • Convince the GP that active treatment of incontinence is possible and mandatory • Increasing awareness of incontinence within the population • Motivating the patient for active treatment

36. What needs to be done to improve the management •The GP should learn which patient could be treated at least initially by her-/himself and who has to be sent to the specialist • The authorities of the National Health Care System must be convinced that the assessment of incontinent (elderly) patients takes time and that adequate payment / resources must be provided

37. Incontinence Help Society to improve the management of incontinence • Information on a district level in cooperation with the local Board of Doctors in evening seminars, especially in conjunction with Continence Awareness Days • Manual of the management of incontinence in an outpatient setting, especially for the GP, in cooperation with the GP Board of Doctors

38. Incontinence Help Society to improve the management of incontinence • Incontinence Kit for the GP • Comprehensive lectures on incontinence for postgraduate doctors becoming GPs

39. How to start – ConclusionConsumer level • Establish a national multidisciplinary and consumer committee that will develop and issue standardized incontinence care guidelines • First step for this strategy will be to develop a core group of individuals, • The results of the consensus conference will be the basis for the development of preliminary guidelines • Another important strategy - establishment of local multidisciplinary continence clinics, interest groups, and outreach programs • This is critical to facilitating service access for individuals in the various local areas • (Canadian Continence Foundation)

40. How to start – ConclusionConsumer level • To bring diverse groups together (general public, community organizations, business, healthcare providers, individuals with incontinence, government) in partnership to make incontinence a priority health issue in terms of resources and focus • Strategy: Establish links with other interest groups, organizations and associations dealing with incontinence issues. Working with other organizations such as seniors' groups, fitness, pre-and post-natal, menopause, disability, women's' and wellness promotion organizations, as well as key events like the International Year of Older People will facilitate the efficient broadening of public education and sensitization to the issue of incontinence • The first step in this process will be to disseminate general information packages on incontinence and continence awareness days / week • The idea of redefining the word "life-threatening" to include "threat to quality of life" was also discussed as an important element to increasing the overall resources and priority allotted to incontinence as a health issue

41. How to start – ConclusionConsumer level • To improve public knowledge about incontinence • Develop advertising guidelines for and with industry to improve accuracy and effectiveness of advertising content • Discussion addressed the fact that industry uses far-reaching vehicles to reach the public, like TV, magazines and industry brochures • These vehicles represent important media through which to reach the public on an ongoing basis with key high-impact messages about incontinence • One of the key messages will be to encourage individuals to seek help from healthcare professionals and from Local continence Foundation

42. How to start – ConclusionProfessional level • To develop a system in long-term care that encourages and rewards continence rather than incontinence • Develop continence as a care requirement for licensing/accreditation for all facilities • The first step will be to gather information provincially and nationally about existing standards, and then to develop a process to advocate for inclusion of continence as a care requirement

43. How to start – ConclusionProfessional level • To improve professional knowledge about incontinence (e.g. medical, nursing, physiotherapy, pharmacy, social workers). • Review all health professional education programs, to better understand to what extent incontinence is included • This will be a first step toward making recommendations for changes with regard to incontinence focus, in health professional undergraduate, graduate and post-graduate education programs • Another general strategy discussed for this issue addressed the importance of developing a few important messages which will help increase professional sensitization to this issue, and which would appear continuously in professional publications

44. How to start – ConclusionProfessional level • The need to provide professionals with an understanding of the incontinence experience from the consumer's point of view • The need for research and product development for treatments and management options which meet actual consumer needs • The need for a common vocabulary to describe and measure the impact of urinary incontinence • The need to broadly disseminate public knowledge with regard to what questions to ask about incontinence and who to ask • The experience of continence organizations around the world has shown that the media are the key to raising awareness, and that, to gain media attention, a hook such as a book tour or a vote on public washrooms is required • Worldwide, however, it has proved a challenge to find a media hook that does not compromise the key message