Table 2 Characteristics of the included studies

Darragh et al.

(2017) [25]

Australia

Number(N): 30(Males(M): 22, Females(F): 8)

Not mentioned (NM)

20–66 years

People with ID

semi-structured interviews(participant’s home or place of employment)

To explore if people with intellectual disability use social media to form relationships that express their sexuality

• Creating new friendships

• Maintaining existing friendships

• Expressing sexuality

• Being worried about assessing, managing, and mitigating the risks relating to meeting a partner for the first time

• Receiving formal education

• Being supported by family

Bjornsdottir et al.

(2017)

[26]

Iceland

N: 29(M:10, F:19)

Maximum variation sampling strategy

26–66 years

People with ID

semi-structured

individual interviews and focus groups(participants’ homes)

To addresses the manifestation of masculinity, femininity, and autonomy in the lives of people with ID

• Being surveilled and controlled by staff and family members

• Limited opportunities in the institutions to develop one’s autonomy

• Sterilizing women with ID

• Worrying about become pregnant

• Sexual abuse or harassment

• Not receiving any support or counseling following the sexual abuse

• Being viewed as an emotionless person

• Being controlled by staff and family (childlike)

• Lack of sexuality education

• Being prohibited from participating in sexuality education

• Limited knowledge regarding sexual health

• Being independent in decision making

• Normalizing gender/sexuality in the lives of people with ID in schools and health systems

• Developing autonomy

Frawley and Wilson

(2016) [27]

Australia

N:25

(M:14

F:11)

NM

17–20 years

People with ID

Focus group

and

individual interviews

(NM)

To explore young adults with ID talking about sexuality education and information

• Lack of knowledge about how to have sexual intercourse

• Lack of access to information

• To know more about their sexuality

Schaafsma et al. (2016)

[28]

Netherlands

N: 20

(F:20)

NM

15–52 years

People with ID

Semi-structured interviews (participant’s home or institution)

To assess the perspectives of people with ID on sexuality-related topics.

• Lack of knowledge of condom use

• Incomplete knowledge of contraception

• Lack of awareness of how condoms protect

• Lack of knowledge about homosexuality

• Concerns regarding negative experiences and sexual abuse

• Carers’ interference in intimate relationships

• Sex educationtopics and knowledge

• To have a partner

• Expressing sexual experiences

• To have a child and have children

• Social media’s role

• Providing special supports by carers

Turner et al. (2016)

[29]

United States

N: 5

(F:5)

Purposeful sampling

21–70 years

People with ID

interview and Observation(participant’s home or author’s therapy office)

To explore how adults with mild (ID) experience their social-sexual lives.

• Lack of training programs

• Lack of contraceptive programs

• Worrying about isolation

• Being Concerned about intimacy

• Anxiety about vulnerability and risk-taking

• Intimacy (i.e. emotional pleasure)

• Sexual experience

• Improving sexual attitudes

• Social justice

• Friendship and marriage

• Recognizing emotional and physical pleasure

• Understanding sexual self-identity

CHOU et al.

(2015)

[30]

Taiwan

N: 11

(M:6

F:5)

Purposive sampling

18–63 years

People with ID

Focus groups(home or residential setting)

To explore attitudes toward sexuality

among men and women with ID in Taiwan

• Feeling embarrassed to talk about sexuality-related issues

• Lack of parents’ desire to talk about sexual health issues

• Bing Shy in expressing feelings

• Negative life experiences concerning sexuality

• Being raped by friends

• Being inappropriately watched during showers

• Being forcibly kissed in the workplace

• Being inappropriately touched on the bus

• Difficulty finding a partner

• Receiving inadequate parental support

• Having to hide romantic relationships

• Developing intimate relationships

• Receiving support to get married

Lofgren-Martenson (2004)15

Sweden

N: 36

(13 youths and

young adults, 13 staff members and 11 parents)

NM

16–21 years

Women with ID

Health care providers

Families

Interview and observation (special schools)

To identify, describe and understand the opportunities and hindrances for young people with ID regarding sexual expression such as homosexuality and bisexuality.

• Problems with communication and language ability

• Receiving little education about sexuality

• Difficulty with understanding education

• Difficulty with expressing views

• Difficulty with specifying the needs (due to lack of knowledge)

• Worrying about Negative effects of childbirth films on sexual desire

• Loneliness, alienation and bullying

• Being shy

• The risks of seeing pornography

• Problems with remembering previous sexual educations

• Being embarrassed to talk about sexuality

• Difficulty understanding, concentrating and focusing

• Sexual education in schools, especially in relation to homosexuality and heterosexuality

• Sex education about feelings and relationships

• Sex education regarding the body’s functions particularly in special education

• Education regarding safer sex and the use of contraception

• Education about relationships, love and friendship

• Sex education at younger ages

• Opportunities to speak to a trusted teacher about sexual health

• Broadcasting TV shows about sex and relationships

• Learning in different ways, such as reading books, watching films, role playing and discussion

Rushbrooke et al. (2014)

[31]

UK

N: 9

(M: 5

F:4)

Purposeful sampling

21–58 years

People with ID

Semi- structured

Interviews (home or supported accommodation)

To carry out an

interpretative phenomenological analysis exploring the experience of intimate relationships for nine adults with ID

• Fear and embarrassment relating to sexual expression

• Sexual identity or orientation

• Family disagreement about being in relationships

• Caregivers’ reactions about being vulnerable’ and susceptible to risk

• Struggles with searching and finding a partner

• Feelings of frustration and upset about finding a partner

• Being controlled by family, caregivers and society

• Having a partner

• Expressing sexuality

• Being independent

• Having opportunities to meet people

• Starting a relationship

• Having a relationship and ending a relationship

Azzopardi-Lane and

Callus

(2014)

[32]

Malt

N:7

(M: 3

F: 4)

NM

20–59 years

People with ID

Focus groups(the Consultative Committee of Persons with

Intellectual Disability (KCC))

To explore

the perceptions of people with ID about sexuality and how these

are influenced by social and cultural norms

• Not having a relationship because of disability

• Feeling constrained because of lack of privacy, limited finances, as well as reliance on others for support, including transport

• Being controlled by parents and carers

• Embarrassment about the subject of sexuality

• Lack of exposure to sexually related conversations and images

• Negative reactions from public related to sexual expression

• Lack of consent from parents

• Lack of trust among parents

• Worrying about unwanted pregnancy among parents

• Talking about their sexuality and the type of relationships they would like to have

• Having more opportunities to have sexual relationships

• Going out with an intimate partner and getting married

• Having opportunity to socialize with their counterparts

• Support from family members

• Being more independent and autonomous

• Regarding the rights of people with ID

Thompson et al. (2014)

[20]

Australia

N: 31 (disability service manager:8, Clinicians: 23)

Purposive sampling

Not Applicable (NA)

Health service providers

Semi-structured interviews(clinic)

To explore barriers to sexual health provision for people with ID

• Worrying about being abused

• Lack of information and education about sexual health

• Limited sexual health resources

• Lack of training for staff and health services providers

• Lack of positive attitude toward sexuality of people with ID

• Providing financial resources for sexual health services

• Formulating policies on sexual health provision

• Respect for privacy

• Understanding effectiveness of sexual knowledge assessment tools

• Increasing awareness among clinicians to address the sexual needs of people with ID

• Identifying barriers to provide sexual health services

Rojas et al.

(2016) [33]

Spain

N: 16(M: 10, F: 6)

NM

18–39 years

People with ID

Semi-structured

Interviews (NM)

To examine sexuality and intimacy in the lives of people with IDs

• Receiving Negative reactions from families

• Receiving limited training

• Lack of knowledge and skill

• Misconceptions about females with ID

• Being controlled by staff and families

• Lack of privacy

• Feeling worried about breaking family rules

• finding a partner and living together as a couple

• Being supported by family

• Receiving information about sexuality

• Being independent

Bernert and Ogletree

(2013)

[1]

United States

N:14

(F: 14)

NM

18–89 years

People with ID

In-depth interviews and observation (the local agency)

To examine sexuality in the lives of women with IDs

• Having limited knowledge of sexual behaviors

• Fear of intercourse and intimacy

• Having limited and exclusively heterosexual experiences

• Practicing abstinence

• Feeling fear of the first sexual act

• Feeling scared of negative consequences of sexual intercourse

• Having physiological concerns about the sexual act

• Perceived or actual lack of pleasure

• The absence of language to talk about intercourse or discomfort

• Worrying about unintended pregnancy

• Worrying about sexually transmitted diseases

• Having protected sex

• Having monogamous sex for the purpose of procreation or parenting

• Caring for loving a sexual partner

Stoffelen et al.

(2013)

[34]

Netherlands

N: 21

(M: 19

F:2)

NM

20–62 years

People with ID

Semi-structured interviews (the Dutch Gay, Lesbian,

Bisexual, and Transgender Organisatio)

Identifying sexual experiences

of homosexual people in the Netherlands with mild

ID

• Negative sexual experiences

• Experiencing sexual abuse

• Difficulty to be open about their homosexual identity

• Being unable to talk about sexual orientation

• Feeling embarrassed to provide sexual guidance among caregivers

• Limited support from caretakers to find a partner

• Lack of privacy

• Receiving specific training programs on sexuality

• Safe work and living environments

• Identifying meeting places

• Supporting people with ID to identify and prevent socially (un)acceptable situations

• Being supported to seek a new partner

Aderemi (2013)

[35]

Nigeria

N: 12

(M:3

F:9)

Purposive sampling

20–62 years

Health Service providers

Individual interviews (special schools)

This paper reports on teachers’ opinions on sexuality of Nigerian learners with ID and awareness of their risk of HIV infection.

• Lack of skills to provide sexuality and HIV education by providers

• Lack of sexuality related curriculum for special schools

• Feeling fear of sexually transmitted infections

• Lack of sexuality and HIV information in accessible formats

• Lack of capacity for intimate relationships

• Receiving sexuality and HIV prevention education

• Preparing teachers to teach sexuality and HIV education

Lafferty et al. (2012)

[36]

Northern Ireland

N:96

(Family Carers: 48

Health Service providers: 48)

Snowballing recruitment

NA

Family and

Service providers

Group and individual interviews” (voluntary organizations)

To identify the barriers to

relationships and sexuality

education for persons with

intellectual disabilities

• Lack of training

• Mental health problems

• Getting sexually transmitted infections

• Inadequacy of education in schools

• Cultural prohibitions

• Scarcity of educational resources

• Showing abnormal behaviors in public

• Facing religious beliefs

• Protection and safety

• Providing sexuality education in schools

• Receiving information about pregnancy, sexually transmitted infections, and contraception

Eastgate et al.

(2012)

[37]

Australia

N:28

(F:28)

NM

>  18 years

Family members and support workers

Semi- structured interviews

and

focus groups (community

organizations and clinics)

To identify the problems of women with ID in sexuality,

relationships and abuse prevention

• Simplistic and unrealistic ideas of relationships

• Disempowerment

• Sexual exploitation via the internet and mobile telephones

• Exploitation and sexual abuse such as coercion and manipulation

• Poor understanding of sexuality

• Lack of knowledge about sexuality issues

• Negative attitudes toward educating people with ID

• Supporting safe, constructive sexual relationships

Nareadi Pasha and Nyokangi

(2012)

[38]

South Africa

N:16

(F: 16)

Purposive sampling

16–24 years

People with ID

In-depth face-to-face interviews (schools)

To identify school-based sexual violence experiences of women with mild ID

• Sexual violence such as touching, threats and intimidation

• Coercive sex or rape

• Feeling scared to report sexual abuse to the family or the police

• Viewing rape as a strategy to punish an intimate partner

• Receiving sexual pictures and pornographic magazines

• Misconceptions about sexual performance of females with ID

• Providing appropriate sex education programs

• Increasing self-protection skills

• Access to different forms of information

• Care and support for victimized females with ID

• Formulating explicit policies and programs on sexual abuse

Fitzgerald and Withers (2011)

[39]

UK

N: 10

(F:10)

NM

19–64 years

People with ID

Semi-structured interview (clinics)

How women with ID

conceptualize their sexuality or develop a sexual identity

• Talking about sex and their sexuality

• Ignoring sexual needs

• Being worried about homosexual tendency

• Prohibition of sexual expression

• worrying about sexual intercourse

• Feeling fear of financial exploitation

• Talking about sex and sexuality

• Experiencing sexual desires

• Increasing awareness of contraception among general practitioners, staff and parents

• Having safety in intimate relationships

Chou and LU

(2011)

[40]

Taiwan

N:11

(family member: 7, Female with ID: 4)

NM

20–58 years

Family and people with ID

Semi-structured interviews (family homes)

To explore decision-making regarding sterilization for women

with ID living with their families

• Decision making by husband or parents-in-law

• Being unable to care for the children

• Risk of pregnancy from rape

• Being concerned about genetic disorders in children

• Difficulty of menstrual care

• Having autonomy to engage in decision-making

• Attention to human rights

• Access to sexual health information

• Providing educational programs

• Receiving more supports from families and staff

Eastgate et al.

(2011)

[41]

Australia

N:9

(F:9)

Snowballing sampling

>  18 years

People with ID

Semi structured interviews (community organizations)

To explore how women withID understand sex,

relationships and sexual abuse, the effects of sexual abuse on their lives, and how they successfully protect themselves from abuse

• Unwanted or abusive sexual acts

• Feeling Fear of sex and avoidance of relationships

• Difficulty refusing unwanted relationships

• Returning to abusive situations

• Sexual abuse by fellow students

• Limited understanding of sex

• Inadequate self-protection skills

• Difficulty reporting abuse and obtaining appropriate support

• Lack of literacy and skills to seek information independently

• Absence of sexuality education at school

• Forgetting what has been learned at school

• Being aware of the possibility of sexual abuse by general practitioners

• Providing ongoing training regarding sexual health for women with ID

• To be asked directly about sexual relationships

• To facilitate access to information or support

• Managing complex mental health and behavioral challenges

• Providing innovative programs

• To be Protected from abuse

Swango-Wilson (2011)

[42]

United States

N: 3

(F:3)

NM

Not Specified

People with ID

Individual interviews (local agencies)

To identify what individuals with ID/DD expect from a sex education program

• Lack of knowledge about sex education

• Fear of getting pregnant

• Lack of social skills

• Providing sex education

• Methods of instruction for sex education learning

• Trust, reliability, and the ability to talk about problems

• Finding committed sexual partner

• Increasing parents’ awareness of marriage of children

• Increasing awareness of safe intimacy

• Increasing awareness of contraceptive methods

• To have mixed gender sex education classes to understand different ideas

• Providing sex education programs

Healy et al. (2009)

[43]

Ireland

N: 32

(F:32)

NM

18–30 years

and

31<

People with ID

Focus groups (community based services)

This study sought to gather information from people with ID about their

nowledge, experiences and attitudes towards sexuality

• Social isolation

• Lack of knowledge about masturbation, sexual consent, safe sexual activities, and The use of condoms in preventing sexually transmitted diseases (STDs)

• Lack of awareness of HIV transmission

• Poor knowledge of both STDs and male/female sexual anatomy

• Lack of privacy in the institutions

• Feeling afraid to talk about sex and related issues among carers

• Having personal relationships

• Companionship and security in relationships

• Respect and privacy

• Sexual skills training for carers

• Learning about sex through formal sex education

• Learning about contraception and its role in preventing pregnancy

• Increasing knowledge of STDs

• Having right to Marriage and having a child

Kwai-sang Yau et al. (2009)

[44]

Hong

Kong

N:12

(M: 3

F: 9)

NM

22–44 years

People with ID

Individual Interviews (NM)

To explore sexuality and sexual

concerns of people with ID in a Chinese cultural context

• Lack of awareness among school and family members about sex education

• inappropriate sexual behaviors in the community

• Lack of awareness about gender roles in the community

• Sexual attitudes (sexual harassment, sexual exploitation, rape, unwanted pregnancy, and health hazards such as STDs)(

• Dating and intimate relationships

• Enhancing sex knowledge

• Positive family attitudes regarding sexual desires of women with ID

• Striving to live normal lives

Kelly et al. (2009)

[18]

Ireland

N: 15

(M:8

F:7)

NM

23–41 years

People with ID

Focus group (disabilities service)

To examine experiences and needs with respect to sexuality and romantic relationships among women with ID

• Lack of sex educationfor people with ID

Confidence in relation to the opposite sex

• Lack of awareness of rights in relation to their sexuality

• Random and opportunistic ways to acquire information about sexual issues

• To acquire information about sexuality and intimacy

• Having opportunity to express ideas and have friends

• Having romantic relationships

McCarthy

(2009)

[17]

UK

N: 23

)F: 23(

Purposive sampling

20–51 years

People with ID

Interview (community-based settings)

To examine experiences and needs with respect to sexuality and romantic relationships among women with ID

• Lack of knowledge about menopause

• Pregnancy during sexual activity

• Lack of awareness of unwanted pregnancy

• Awareness about women’s contraceptive methods

• contraception

• Knowledge regarding family planning and contraception