HEALTH NEEDS AND ACCESS TO HEALTHCARE FOR INTERSEX CHILDREN AND

PEOPLE IN UGANDA

Questionnaire for intersex persons and their parents

Intersex individuals confront a unique set of challenges, such as social stigma, discrimination, and
inappropriate medical interventions, highlighting the urgent need for equitable and respectful healthcare
services. Therefore, Support Initiative for People with Congenital Disorders (SIPD intends to conduct a
study with the aim of gathering initial baseline data regarding the different healthcare needs of
intersex persons and children in Uganda and the quality of healthcare services as well as accessibility
of health facilities to intersex children and people. The study will be conducted in six (6) districts of
Tororo, Gulu, Mbarara, Mukono, Kampala and Jinja.
The findings will pinpoint specific areas where enhancements can be implemented in service delivery,
healthcare providers' competencies, and mechanisms for safeguarding confidentiality, ensuring that
intersex individuals receive healthcare that respects their dignity and provides optimal outcomes.
Would you like to take part in ☐ Yes If No, please thank the respondent and end the
the study? ☐ No interview

Instructions: Please put a ‘x’ in the box ☐ next to the answer of your choice or write in the space
_______ provided as the case may be
Section 1: Socio – demographic characteristics
Sn Question Response Skip logic

01 District [Select from list]

02 Sub County [Select from list]

03 Parish [Please type in the Parish]

04 Village [Please type in the village]

05 Gender identity ☐ Male

☐ Female
☐ Non – binary
☐ Prefer not to say

06 Age group of respondents ☐ <18 years If a person is below

☐ 18 - 24 years 18 years, skip to
Question 7
☐ 25 - 34 years
☐ 35 - 44 years
 ☐ 45 - 54 years
☐ 55 - 64 years
☐ 65 and older
07 Marital status ☐Single
☐Married
☐Widow/widower
☐Separated
08 What is your highest education level? ☐No formal education
☐Primary
☐Secondary
☐Bachelors
☐Masters
☐PhD
09 What is your employment status? ☐ Full time If unemployed or
☐ Self-employed student, Skip to
question 11
☐ Part time
☐ Student
☐ Unemployed
10 What is your monthly income (Ugx)? ☐ < 100,000
(Not applicable is for those that report being ☐ 100,001 – 500,000
student or unemployed)
☐ > 500,000
☐ Not Applicable (N/A)

Section 2: Health needs of intersex persons

Sn Question Response Skip logic
11 Do you have any intersex characteristics? ☐ Yes If No, end interview
☐ No

12 If you feel comfortable, please describe your intersex

characteristics
13 Have you ever sought medical, psychological or any ☐ Yes If No, skip to
support related to your intersex characteristics? ☐ No question 17

14 If so, were all the medical plans or interventions ☐ Yes

discussed with you thoroughly before you received the ☐ No
intervention?
15 At the time of receiving care, did you feel that the ☐ Yes
health worker was knowledgeable and sensitive to your ☐ No
health needs?
16 How do you rate, the services and care you received ☐ Very poor
from the health worker? ☐ Poor
 ☐ Good
☐ Very good

17 Have you even been discriminated or stigmatized due to ☐ Yes If No, or do not
your intersex characteristics? ☐ No remember skip to
question 19
☐ Do not remember

18 If your feel comfortable, please mention who ☐ Health workers

discriminated or stigmatized you. ☐ Spouse
(Please tick all options that apply)
☐ Parent/caretaker
☐ Work colleague(s)
☐ Children
☐ Friends

Now, we are going to seek your opinion and experience on health care needs of intersex persons
19 Have you encountered any health challenge related to ☐ Yes If No, skip to
your intersex characteristics? ☐ No question 21

20 If comfortable with you to share, please mention the

challenges have your encountered

21 Are there any health care services that you feel are ☐ Yes If No, skip to
currently lacking within your community for intersex ☐ No question 23
individuals?
22 What health care services should be available but
lacking?
23 What health care needs do you believe are important
and should be provided for persons with intersex
characteristics
24 What do you think, health care providers and health
institutions like health facilities and others would do to
better support intersex persons?
Now we are to ask, access and seeking health care, feel free to tell us whether you strongly disagree,
disagree, agree or strongly agree with the statements
25 Seeking health care providers who understand intersex ☐ Strongly disagree
concerns is easy. ☐ Disagree
☐ Agree
☐ Strongly Agree

26 Intersex people have higher chances of experiencing ☐ Strongly disagree

unfair gender discrimination from health care providers ☐ Disagree
than other people.
☐ Agree
☐ Strongly Agree

27 I have avoided visiting health care providers when ☐ Strongly disagree

feeling unwell because of my intersex characteristics ☐ Disagree
☐ Agree
☐ Strongly Agree
Now we will ask about mental health wellbeing
28 How do you rate your over wellbeing especially ☐ Very poor
mentally putting into consideration your experiences ☐ Poor
being an intersex person?
☐ Good
☐ Very good

Section 3: Health service packages for intersex persons

Now we are going to ask you about the different health service packages that you have received from the
health facilities. (please select answer that best describe you)
In the past 12 months,
a) Have you received mental health services to address any emotional and psychological concerns
you might have faced?

☐ Yes ☐ No

b) Have you received comprehensive education, counselling and training from your health works to
help you understand intersex characteristics and be able to make informed decisions before any
medical procedure or service?

☐ Yes ☐ No

c) Have you received any hormone related therapy or services from medical practioner?

☐ Yes ☐ No

d) Have you received comprehensive social support from social network be it peers, parents, spouse,
relatives?

☐ Yes ☐ No
 e) Have you received legal, advocacy and social protection support against discrimination and
stigma from duty bearers such as Local council chairpersons, probation officers, care givers, legal
advocates among others?

☐ Yes ☐ No

f) Have you accessed health care services such as treatment for common health issues like malaria
among others from any health service provider?

☐ Yes ☐ No

Now we are going to ask you about accessibility of these health service packages that you have received
from the health facilities. (Please select answer that best describe you)
g) Are these health services packages available (you can get them anytime you need to) within your
community?

☐ Yes (End the Interview) ☐ No

h) From your experience, what is health service packages are missing?

☐ Hormone related therapy

☐ Mental health services
☐ General medical care for common health issues
☐ Intersex related Health Education and counselling services
☐ Legal and social support
☐ Others (please specify) …………………………………