Sex Education for Individuals with Intellectual Development Disorder (IDD): A Scoping Review

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

Thank you for the opportunity to review this paper.  I appreciate the academic effort that went into its creation.   It is well formed and well written.   I have a couple of concerns for the authors’ consideration.

1. I’m not surprised to learn that training will promote knowledge and maybe help shape attitudes. Notably lacking from the paper is anything that links this training to actual behavior. I’d like to learn whether training actually reduces instances of victimization or actually promotes safer sexual behavior.   Of course, if those measures aren’t included in the reviewed articles, they can’t be addressed in this article.  I would welcome any invitation for future research on behavioral impact of these training approaches.
2. The article really needs a discussion of capacity to give consent for sexual behavior. While I understand that advocates may argue that people l with intellectual disability should be able to experience sexual behavior, this is not always the view of district attorneys or legal officials.   Absent a formal adjudication process, consent is a poorly defined construct.   Without clarity on this issue, sexual participants with intellectual disability can be at legal risk. 
3. Considering caretakers, one challenge we have seen in m programs is a conservative religiosity among caretakers and total denial of sexuality from parents (linking to your infantilization point). I suppose that the use of training programs to attempt to shape attitudes has some potential value.
4. As a clinician/Administrator, it has sometimes felt that we jump into sexuality training when what is really needed is socialization training. Most intellectually typical individuals ease into sexuality over time.  We need to support some sort of easing in process for people with intellectual disability.    We need to focus any training on the  emotional and cognitive level of the individuals. 
5. The report on the number of articles belongs in the methods section, not the results. In this study, as in other scoping reviews and meta-analyses, it seems that the selection criteria reduce the actual number of studies to something that parallels the introduction section of a paper, rather than a summary of an area. That challenge gets compounded when, as in this case, some of the studies are training studies for people with intellectual disability and some are parents/caretakers.   Not that this is an improper inclusion / exclusion criterion, but that its use substantially reduces the effective sample.   Rather than 18 studies, there were 11 studies with people who have intellectual disability and 7 studies of parent/caretakers.
6. Please eliminate use of acronyms

Author Response

We would like to thank the reviewers for their valuable comments and suggestions, which helped us improve the clarity and quality of our manuscript and our perspective on specific issues of the study.

Reviewer 1

1. I'm not surprised to learn that training will promote knowledge and maybe help shape attitudes. Notably lacking from the paper is anything that links this training to actual behavior. I'd like to learn whether training actually reduces instances of victimization or actually promotes safer sexual behavior.   Of course, if those measures aren't included in the reviewed articles, they can't be addressed in this article.  I would welcome any invitation for future research on behavioral impact of these training approaches.

THIS IS AN IMPORTANT SUBJECT THAT COULD BE ADDRESSED IN A FUTURE PAPER. INDEED, THIS WAS NOT AN OBJECTIVE OF THE STUDY, BUT WE TAKE GOOD NOTE OF THE SUGGESTION FOR AN UPCOMING ARTICLE.

 

1. The article really needs a discussion of capacity to give consent for sexual behavior. While I understand that advocates may argue that people l with intellectual disability should be able to experience sexual behavior, this is not always the view of district attorneys or legal officials.   Absent a formal adjudication process, consent is a poorly defined construct.   Without clarity on this issue, sexual participants with intellectual disability can be at legal risk. 

THIS IS A VALUE AND VERY IMPORTANT POINT. HOWEVER, SINCE THIS ISSUE IS NOT AN OBJECTIVE OF THE STUDY AND DOES NOT EMERGE IN THE REVIEWED STUDIES, DISCUSSING IT MIGHT SEEM OUT OF PLACE.

 

1. Considering caretakers, one challenge we have seen in m programs is a conservative religiosity among caretakers and total denial of sexuality from parents (linking to your infantilization point). I suppose that the use of training programs to attempt to shape attitudes has some potential value.

ALTHOUGH THE REVIEWED STUDIES DO NOT APPROACH THIS ISSUE, IT IS EXPECTED THAT SHAPING HAPPENS. IT IS EVEN LIKELY THAT EXPERIENCING PROGRAMS MIGHT MAKE SEXUALITY SEEM MORE NATURAL OR ACCEPTABLE FOR PARENTS AND CARETAKERS.

 

1. As a clinician/Administrator, it has sometimes felt that we jump into sexuality training when what is really needed is socialization training. Most intellectually typical individuals ease into sexuality over time.  We need to support some sort of easing in process for people with intellectual disability.    We need to focus any training on the  emotional and cognitive level of the individuals. 

WE APPROACH THIS CONCERN IN THE DISCUSSION. MOST PROGRAMS REPORTED IN THE REVIEWED ARTICLES FOCUS ON PREVENTION OR DEFENSES (MAINLY FOR GIRLS) AND SOMEHOW NEGLECT THE EMOTIONAL AND COGNITIVE ASPECT OF INTERVENTIONS. IT IS UNDERSTANDABLE BUT LIMITS THE SCOPE OF THE STRATEGIES.

 

1. The report on the number of articles belongs in the methods section, not the results. In this study, as in other scoping reviews and meta-analyses, it seems that the selection criteria reduce the actual number of studies to something that parallels the introduction section of a paper, rather than a summary of an area. That challenge gets compounded when, as in this case, some of the studies are training studies for people with intellectual disability and some are parents/caretakers.   Not that this is an improper inclusion / exclusion criterion, but that its use substantially reduces the effective sample.   Rather than 18 studies, there were 11 studies with people who have intellectual disability and 7 studies of parent/caretakers.

ALTHOUGH WE ARE AWARE THAT THERE IS DISAGREEMENT OVER IF "THE REPORT ON THE NUMBER OF ARTICLES BELONGS IN THE METHODS SECTION, NOT THE RESULTS", WE SHOULD NOTE THAT THIS STATEMENT IS NOT CONSISTENT WITH THE GUIDELINES ESTABLISHED BY THE PRISMA-SCR (PREFERRED REPORTING ITEMS FOR SYSTEMATIC REVIEWS AND META-ANALYSES EXTENSION FOR SCOPING REVIEWS) AND THE JOANNA BRIGGS INSTITUTE (JBI).ACCORDING TO PRISMA-SCR, THE NUMBER OF STUDIES INCLUDED AFTER APPLYING THE ELIGIBILITY CRITERIA SHOULD BE REPORTED IN THE RESULTS SECTION, TYPICALLY ACCOMPANIED BY A FLOW DIAGRAM DETAILING THE STUDY SELECTION PROCESS. SIMILARLY, THE JBI RECOMMENDS THAT THE RESULTS OF SCREENING AND STUDY INCLUSION BE PRESENTED IN THE RESULTS, WHEREAS THE ELIGIBILITY CRITERIA AND SEARCH METHODS SHOULD BE DESCRIBED IN THE METHODS SECTION. THEREFORE, RELOCATING THE REPORT OF INCLUDED ARTICLES TO THE METHODS SECTION WOULD NOT ALIGN WITH CURRENT BEST-PRACTICE GUIDELINES FOR SCOPING REVIEWS.

THE REVIEWER'S ARGUMENT IS PLAUSIBLE REGARDING THE NUMBER OF ARTICLES (11+7). STILL, OUR OPTION WAS TO INCLUDE ANY PROGRAMS WHOSE TARGET WAS CHILDREN WITH INTELLECTUAL DISABILITY, WHETHER PROGRAMS ARE DIRECTLY DELIVERED TO CHILDREN, PARENTS OR CAREGIVERS.

 

 

1. Please eliminate use of acronyms

 

THE MAIN ACRONYMS WE USE ARE THE FOLLOWING:

• IDD – Intellectual Development Disorder
• ID – Intellectual Disability
• PRISMA-ScR – Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews
• JBI – Joanna Briggs Institute
• PCC – Population, Concept, Context (modelo para definir critérios de inclusão em scoping reviews)
• MMAT – Mixed Methods Appraisal Tool

 

WE USE THESE ACRONYMS ACCORDING TO APA 7 STYLE. ELIMINATING THEM WOULD BE PROBLEMATIC. THE FIRST TWO ARE USED SEVERAL TIMES, WHICH MEANS THAT THE TEXT WOULD BE LONGER AND, ABOVE ALL, EXHAUSTING. THE LAST FOUR ARE SO WIDELY KNOWN IN THE CONTEXT OF SCOPING OR SYSTEMATIC REVIEWS THAT IT WOULD BE STRANGE TO USE THE WHOLE EXPRESSION. FOR EXAMPLE, SUBSTITUTING “PRISMA-ScR” FOR “Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews”, AFTER THE FIRST CITATION SEEMS INADEQUATE.

 

Reviewer 2 Report

Comments and Suggestions for Authors

I had the pleasure of reading and reviewing a manuscript entitled "Sex Education for Individuals with Intellectual Development Disorder (IDD): A Scoping Review".

 

The manuscript presents a systematic review of research that dealt with the sexual education of persons with intellectual disabilities. Adequate scientific methods and approaches (such as the PRISMA-ScR checklist, PCC model and MMAT-2018) were applied in the methodology, and the results were presented in detail and clearly.

The only concrete proposal would be to add to the aim of the study that, in addition to identifying the context, strategies and outcomes of sexuality education... the improvement of future research on the same topic. This is especially because a lot of attention was paid to it in the discussion. In several places, it is pointed out that it is necessary to improve the research methodology, which certainly represents the scientific contribution of this work.

A few more technical details –

Line 32 - abbreviation IWID - no explanation given

Line 209 – parentheses are redundant

Figure 1 - small letters

 

Kind regards

Author Response

Reviewer 2

The only concrete proposal would be to add to the aim of the study that, in addition to identifying the context, strategies and outcomes of sexuality education... the improvement of future research on the same topic. This is especially because a lot of attention was paid to it in the discussion. In several places, it is pointed out that it is necessary to improve the research methodology, which certainly represents the scientific contribution of this work.

This is an excellent observation. We appreciate the suggestion, highlighting an aspect that had escaped us in terms of being an aim of the study. We have, therefore, added a sentence to the previous aims (in full).

The present study aims to identify the content, strategies, and outcomes of sex education programs for people with intellectual disabilities and to know how sex education is being offered to parents, caregivers, and teachers. Additionally, this study aims to contribute to the improvement of research methodology in the field of sex education for people with intellectual disabilities by mapping current practices and identifying common conceptual and procedural limitations.

A few more technical details –

Line 32 - abbreviation IWID - no explanation given

Corrected in the text: “Individuals With Intellectual Disorder (IWID)”

Line 209 – parentheses are redundant

We could not find parentheses in line 209. We checked for possible misuse of parentheses in other parts of the text but could not find them

Figure 1 - small letter

We believe this is a problem in the edition of the text. We cannot interfere.