Continence Promotion: Prevention, Education & OrganizationContinence Promotion: Prevention, Education & Organization

Louis Denis

Ilan Gruenwald

Chye Hua Ee

Richard Millard

Richard Roberts

Carolyn Sampselle

Katherine Williams

Diane Newman - Chair

Louis Denis

Ilan Gruenwald

Chye Hua Ee

Richard Millard

Richard Roberts

Carolyn Sampselle

Katherine Williams

Diane Newman - Chair

Continence Promotion: Prevention, Education & OrganizationContinence Promotion: Prevention, Education & Organization

• Primary PreventionPrimary Prevention

• EducationEducation

• Consumer/PublicConsumer/Public

• ProfessionalProfessional

• OrganizationsOrganizations

• Delivery of Continence Care & ServicesDelivery of Continence Care & Services

• NationalNational

Continence Promotion: Prevention, Education & Organization Continence Promotion: Prevention, Education & Organization

Promoting Awareness

National Organizations – 2003-4 ICI Survey National Organizations – 2003-4 ICI Survey

• Background

• Survey undertaken and reported @ 1st ICI

• Obtained organizations from 2 sources

• 2nd ICI report• ICS Continence Promotion Committee (CPC) website

• Survey in English (American)

National Organizations – 2003-4 ICI Survey National Organizations – 2003-4 ICI Survey

• Survey

• 31 questions plus contact information31 questions plus contact information

• Started distribution in 2003Started distribution in 2003• Faxed, emailed on 6 occasions to 38 Faxed, emailed on 6 occasions to 38

organizations in 29 countriesorganizations in 29 countries

AUSTRALIA AUSTRIA (New) BELGIUM

BRAZIL (New) CANADA COLOMBIA (New)

CZECH REPUBLIC (New) DENMARK (New) GERMANY

CHINA HUNGARY (New) INDIA

INDONESIA ISRAEL ITALY

JAPAN KOREA MALAYSIA

NETHERLANDS NEW ZEALAND NORWAY

PHILIPPINES POLAND (New) SINGAPORE

SWEDEN TAIWAN THAILAND

UNITED KINGDOM (4) UNITED STATES (4)

National Organizations – Survey ResultsNational Organizations – Survey Results

National Organizations – Survey ResultsNational Organizations – Survey Results

• Survey ResultsSurvey Results• Number respondents Number respondents N = 24 ( 66.7 % return) N = 24 ( 66.7 % return) • Number of countries responding Number of countries responding N = 19 N = 19

• StructureStructure• 12 organizations established for more than 10 years12 organizations established for more than 10 years• Only 2 Only 2 DO NOTDO NOT have an advisory board have an advisory board• MembershipsMemberships

– ProfessionalsProfessionals– Lay public ( 4 organizations > 50% representation) Lay public ( 4 organizations > 50% representation)

• EmployeesEmployees– 12 organization have between 1 and 10 employees12 organization have between 1 and 10 employees– 4 organizations have 11 – 40 employees4 organizations have 11 – 40 employees

National Organizations – Survey Results National Organizations – Survey Results

• MissionMission• ““Educate consumers/lay public”Educate consumers/lay public”• ““Promote continence via public education”Promote continence via public education”• ““Educate healthcare professionals”Educate healthcare professionals”• Advocate for consumer/lay publicAdvocate for consumer/lay public• Influence policyInfluence policy

National Organizations – Survey ResultsNational Organizations – Survey Results

• Disorders they “cover”isorders they “cover”• Urinary incontinence (all) Urinary incontinence (all) • OtherOther

– Bowel (IFFGD - USA)Bowel (IFFGD - USA)– Interstitial cystitis/chronic pelvic painInterstitial cystitis/chronic pelvic pain– Childhood enuresis (ERIC – UK)Childhood enuresis (ERIC – UK)

National Organizations – Survey ResultsNational Organizations – Survey Results

• Do they survey membership?

• 4 have conducted surveys4 have conducted surveys• 2 have published results2 have published results

National Organizations Survey ResultsNational Organizations Survey Results

• Sources of Funding $$$$Sources of Funding $$$$• Members Members • Charity Charity • Government Government

– 3 organizations - 30%, 35% and 90% 3 organizations - 30%, 35% and 90% – Little interestLittle interest

• Education grants – 11 organizations Education grants – 11 organizations • Industry – Industry – Most rely on thisMost rely on this

The National Continence Management Strategy Information booklet

Outside evaluation

The National Continence Management Strategy Information booklet

Outside evaluation

Australia

National Continence Management StrategyAustraliaNational Continence Management StrategyAustralia

• Australian Government

• $31 million - 1998 to 2006

• Improve continence awareness, treatment and management

• Mission

• Preventative strategies and health promotion initiatives

• Reduce admission to aged care homes by improving the treatment and management of incontinence in older Australians

• Promote good practice in continence care among all health professionals.

National Organizations – Survey ResultsNational Organizations – Survey Results

• Publicity & Awareness - Themes

• ““Little” understanding of problem(s) by publicLittle” understanding of problem(s) by public

• Media coverage is “poor”Media coverage is “poor”

• SponsoredSponsored

• National Public Awareness CampaignsNational Public Awareness Campaigns

• Health Promotion ProjectsHealth Promotion Projects

• Health FairsHealth Fairs

National Organizations – Survey Results National Organizations – Survey Results

• Publicity & Awareness - Themes• Quantification of program outcomes/impactQuantification of program outcomes/impact

• Articles in newspapers – 279Articles in newspapers – 279– Poland reported highest numberPoland reported highest number– ERIC – highest number in TV – 20ERIC – highest number in TV – 20

• Other methods used to determine impactOther methods used to determine impact

• Increase in calls to National HelplineIncrease in calls to National Helpline• Increase in “hits” to websiteIncrease in “hits” to website• 200 million impressions of Public Service 200 million impressions of Public Service

AnnouncementsAnnouncements

National Organizations – Survey ResultsNational Organizations – Survey Results

• Publicity & Awareness - Themes

• Experiences learnedExperiences learned

• Important to perceive needs of target audienceImportant to perceive needs of target audience• Public still embarrassed about issuePublic still embarrassed about issue• Bowel incontinence remains a significant tabooBowel incontinence remains a significant taboo• Need to increase public awareness starting in Need to increase public awareness starting in

childhood yearschildhood years

National Organizations – Survey ResultsNational Organizations – Survey Results

• Survey Problems

• Too longToo long

• LanguageLanguage

• Incorrect information from source Incorrect information from source

OrganizationsRecommendations OrganizationsRecommendations

• Repeat survey to keep information on National Organizations current (consider ICS-CPC perform year survey)

• Worldwide Resource Center

• Establish continuing government and commercial support

• Independently evaluate programs and material