No 190 June 2015

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Girls Survey

HANNAH OPESKIN
Hannah Opeskin is Health Promotion Officer, Haemophilia Foundation Australia

HFA is currently developing new information resources for young women with bleeding disorders. These resources are for young women aged 13-25 years.

As part of the development process, HFA surveyed young women with bleeding disorders aged 13-25 years, parents with daughters aged 13-25 years and health professionals who work with young women with bleeding disorders or carry the bleeding disorder gene and are between these ages. Results from the survey will be used to help guide and develop the resources.

The following are responses from the survey.

Young women aged 13-25 years

Age group

First place to look for information

Bleeding disorder or carrier status

How to access education information

72.7% of young women wanted education information to be available in both print and online

100% of young women believed that the education resources should contain personal stories.

Topics with a lack of information

Young women had experienced difficulty finding information about the following:

  • Females with bleeding disorders
  • Changing factor levels
  • Genetics
  • Bleeding or bruising during sex
  • Symptomatic carriers
  • Periods
  • Pregnancy, childbirth and family planning
  • Managing bleeds
  • Living with haemophilia
  • Testing
  • Treatment and side effects
  • Costs involved
Parents with daughters aged 13-25 years

Age group of daughters

Parents first place to look for information

How to access education information

100% of parents wanted education information to be available in both print and online

Parents of daughters with bleeding disorders believed that the education resources should contain videos and checklists

Health professionals who work with young women aged 13-25 years
 

Health professionals believed that the important issues for von Willebrand disorder were:

  • Menstruation, gynaecological symptoms and heavy bleeding
  • Knowing how they are affected
  • Diagnosis (understanding and finding a correct diagnosis)
  • Inheritance and genetics
  • Relationships
  • Pain
  • Complications to bleeding
  • Iron deficiency
  • Pregnancy, childbirth and family planning
  • Obtaining information
  • Disclosure
  • Management
  • Lifestyle implications including sports
  • Sexual intercourse
  • Self-acceptance
  • Treatment and access
  • Financial management
  • The role of the Haemophilia Centre
  • Self-advocacy
  • Operations and surgery

Health professionals believed that the important issues for young women carrying the genetic alteration for haemophilia were:

  • Inheritance
  • Knowing how they are affected
  • Pregnancy, childbirth and family planning including access to IVF
  • Genetic counselling
  • Menstruation
  • Understanding diagnosis
  • Treatment plans
  • Disclosure
  • Understanding low factor levels
  • Iron deficiency
  • Relationships
  • Testing
  • Access to support and resources including counselling
  • Information
  • Management of bleeds
  • The role of the Haemophilia Centre
  • Self-advocacy
  • Operations and surgery

Priority issues for girls

How to access education information

69% of health professionals wanted education information to be available in print as well as online with the ability to download

92% of health professionals wanted education information to contain personal stories

 

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