Sexuality Among Adolescents With Intellectual Disability: Balancing Autonomy and Protection

Enujioke, Sharon C.; Leland, Brian D.; Munson, Emily; Ott, Mary A.

doi:10.1542/peds.2021-050220

Cited by 6 publications

(6 citation statements)

References 29 publications

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“…The joint painting allowed the adolescents to find their own separate voice. They could make decisions and occasionally control the situation, which is often impossible for adolescents with ID because of their disabilities [ 58 , 59 ]. Hence, the JPP acted as an assessment tool and as an intervention process that enabled transformative processes.…”

Section: Discussionmentioning

confidence: 99%

“…The second conclusion is connected to the importance of the tradeoff between dependency and autonomy that emerged from the implicit expressions during the painting process. The inevitable tension that exists between the two is common in parent–adolescent relationships and in particular with mothers and adolescents with ID [ 59 ]. The JPP provided a context where the expression of these relational issues could be communicated non-verbally.…”

Section: Discussionmentioning

confidence: 99%

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Relationship Aspects of Mothers and Their Adolescents with Intellectual Disability as Expressed through the Joint Painting Procedure

2022

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The quality of the interaction between mothers and their children with an Intellectual Disability (ID) plays a crucial role in their development and in particular during adolescence. This qualitative study was designed to provide a better understanding of aspects of the relationships between mothers and their adolescents with ID through an art-based tool, the Joint Painting Procedure. The qualitative analysis of six dyads of mothers and adolescents with severe, moderate and mild ID was based on the principles of narrative and phenomenological inquiry. The findings yielded three key themes that emerged from the relational dynamics during the JPP: (1) from dependency to autonomy, (2) the joint painting as a way to foster verbal communication, and (3) playfulness and enjoyment. The JPP appeared to serve as a meaningful art-based assessment of the implicit and explicit aspects of the relationships which evolved during the interaction. The findings underscore the potential of the JPP as a non-verbal, art-based tool that allows researchers and clinicians to learn more about the dynamics of relationships between mothers and their adolescents with ID. It also enables a context where the expression of relational issues can be communicated and even transformed.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Relationship Aspects of Mothers and Their Adolescents with Intellectual Disability as Expressed through the Joint Painting Procedure

2022

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“…Individual capacity to make healthcare decisions will vary, depending on the child's age and the decision being made, such as its complexity and the risk of the potential outcomes. There are two main approaches to decision making for individuals with intellectual disability: shared decision making and supported decision making [41,42]. Figure 1 presents how shared and supported decision making may support the child's learning and practise of skills, with potential to improve health outcomes.…”

Section: How To Facilitate Healthcare Decision Makingmentioning

confidence: 99%

Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability

Downs,

Keeley,

Skoss

et al. 2024

Int J Equity Health

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Background Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child’s wishes with the responsibility of keeping them safe. However, there is a scarcity of literature evaluating how to effectively involve them in decision making. In this context, we review the concept of health literacy, focusing on the skills of healthcare decision making for children and adolescents with intellectual disability. Methods We describe the concept of health literacy and models explaining shared decision making (individuals and healthcare professionals collaborate in decision making process) and supported decision making (when a trusted person supports the individual to collaborate with the healthcare professional in the decision-making process), and a rapid review of the literature evaluating their efficacy. We discuss healthcare decision making for children and adolescents with intellectual disability in the context of relevant recommendations from the recent Disability Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability in Australia. Results Health literacy skills enable individuals to access, understand, appraise, remember and use health information and services. Shared decision making has been described for children with chronic conditions and supported decision making for adults with intellectual disability. Decision-making contributes to how individuals appraise and use healthcare. The rapid review found very limited evidence of outcomes where children and adolescents with intellectual disability have been supported to contribute to their healthcare decisions. Recommendations from the Disability Royal Commission highlight current needs for greater efforts to support and build the capacity of individuals with disability to be involved in the decisions that affect their life, including healthcare decision making. Conclusions Existing rights frameworks and healthcare standards confirm the importance of providing all people with the opportunities to learn and practise health literacy skills including decision making. There is little literature examining interventions for healthcare decision making for children with intellectual disability. Childhood is a critical time for the development of skills and autonomy. Evidence for how children and adolescents with intellectual disability can learn and practice healthcare decision-making skills in preparation for adulthood is needed to reduce inequities in their autonomy.

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“…People with intellectual disability are often misperceived as being either asexual, hypersexual or sexually immature [ 16 ]. Additionally, evidence highlights issues related to autonomy versus vulnerability, exploitation or risk of harm when supporting young people with intellectual disability to make decisions regarding their sexual activity [ 17 ]. There is a need to develop the understanding of families and professionals in education, social care and health services that many people with mild and moderate intellectual disability are interested in and actively engage in sexual relationships [ 14 , 18 ].…”

Section: Introductionmentioning

confidence: 99%

The Experiences of Young People with Intellectual Disability, Parents and Professionals in Relationships and Sexuality Education Programmes: Findings from a Qualitative Study

Brown,

Linden,

Marsh

et al. 2024

Healthcare

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People with intellectual disability want friendships and meaningful relationships, and some want intimacy. However, the expression of sexuality is an area where potential freedoms are often limited and restricted compared to their peers. While some relationships and sexuality education programmes do exist for this population, most focus on knowledge acquisition regarding sexuality and sex but lack in their focus on relationships, informed choices and decision-making. The aim of this study was to identify good practices and methods of delivery in relationships and sexuality education for children and young people with intellectual disability. A qualitative design was undertaken. Information about our study was distributed to eight special schools in the UK. Semi-structured interviews and focus groups were employed for data collection. Data from 37 pupils with intellectual disability, 11 parents and 16 healthcare and other professionals were thematically analysed. Following data analysis, three themes emerged: (i) seeking and sharing information; (ii) protecting and keeping safe; and (iii) learning for the future. The findings highlight that pupils are keen to learn about life changes and societal influences and want reliable information. Parents and professionals recognise that children and young people with intellectual disability will develop into adults and may be vulnerable when they leave the security of the school setting. They recognise that children and young people need to know about socialising, puberty, consent and contraception. Evidence-based programmes should be designed with these stakeholders to ensure children and young people with intellectual disability receive developmentally appropriate information to make happy and safe decisions about their relationships.

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Sexuality Among Adolescents With Intellectual Disability: Balancing Autonomy and Protection

Cited by 6 publications

References 29 publications

Relationship Aspects of Mothers and Their Adolescents with Intellectual Disability as Expressed through the Joint Painting Procedure

Relationship Aspects of Mothers and Their Adolescents with Intellectual Disability as Expressed through the Joint Painting Procedure

Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability

The Experiences of Young People with Intellectual Disability, Parents and Professionals in Relationships and Sexuality Education Programmes: Findings from a Qualitative Study

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