Few studies have considered families' views about adolescents' sexual development. The authors compared attitudes and behaviors of mothers of young people with (n = 30) and without intellectual disability (n = 30). Both groups placed similar importance on dealing with their children's developing sexuality and were similarly confident in doing so. Mothers of young people with intellectual disability held more cautious attitudes about contraception, readiness to learn about sex, and decisions about intimate relationships. Mothers expressed concerns about their children with intellectual disability and sexual vulnerability. They had also spoken about fewer sexual topics with their children and began these discussions when their children were older. The findings can inform more sensitive supports and materials to help families deal with the sexual development of their offspring.
Sexuality is a central aspect of what it means to be human and is inextricably linked to a person's overall health and well-being. The sexual rights and needs of individuals with intellectual disability (ID) have received increased attention in the past several decades, and their importance has been highlighted in a number of international policy documents (United Nations, 1993, 2006). The reality is that sexuality remains a highly sensitive and frequently neglected issue. One of the challenges of research in this area is that although sexual health is a public health concern, primarily because of rising sexually transmitted infections and unwanted pregnancies, it ultimately remains a very private aspect of people's lives. Shakespeare (2000) highlighted that it is easier to discuss and tackle issues of physical access and discrimination faced by people with disabilities than it is to address exclusion from sexuality. Consequently, “education and support around sexuality, sexual health and personal relationships has tended to be avoided or ignored” (Simpson, Lafferty, & McConkey, 2006, p. 12).
Parental and caregiver involvement in sex and relationship education is important, regardless of whether a child has a disability. The role that parents play in providing sex education to their children with ID may be even more significant because of their children's continued dependence on them for support as they negotiate adult status. For example, at a time when their peers without ID are obtaining greater independence, young people with ID are rarely given the opportunities to develop their autonomy or social networks, spending a large proportion of their time under the supervision of adults (Cole & Cole, 1993). As much education about sex-related matters is experiential and gained through informal routes, such as interacting with peers (Cole & Cole, 1993), these young people are excluded from the opportunities to learn about sex. This exclusion may contribute to the low levels of sexual knowledge frequently reported for young people with ID, particularly when compared with their peers without ID (Cheng & Udry, 2003; Isler, Tas, Beytut, & Conk, 2009; Pownall, 2010; Szollos & McCabe, 1995).
Despite the potential significance of parents' roles, there remains limited understanding of family perspectives and support needs in relation to sexuality and sexual relationships (Fraser & Sim, 2007; Morris, 2002). The limited research available suggests that both young people and their families find it difficult to discuss sexual matters together (Pownall, Jahoda, Hastings, & Kerr, 2011). For instance, recent research has reported that young people with ID were less likely to discuss sexual matters with their family members then were their peers without ID (McCabe, 1999; Pownall, 2010). Researchers have also reported that parents of young people with ID often have negative attitudes or unrealistic beliefs regarding their young people's sexuality. For example, compared with parents of young people without ID, parents of young people with ID are more likely to be unaware that their child is sexually active, to believe their child is not interested in the opposite sex, and to believe that discussing sex would encourage sexual behavior or promote inappropriate behavior (Cheng & Udry, 2003).
More recent research has suggested that parents and caregivers do recognize the importance of providing their adolescents with information about sexuality (Pownall et al., 2011; Swango-Wilson, 2008); cross-sectional studies have suggested that younger parents of children with ID are becoming more accepting of their children's sexuality (Cuskelly & Bryde, 2004; Karellou, 2003). However, such acceptance does not guarantee that attitudes are translated into action, and often young people with ID are not given the opportunities required to develop their sexual identities (Shepherdson, 1995; Swango-Wilson, 2008).
Although it is important to explore parental attitudes toward sexuality and their children with ID, it is perhaps more informative to obtain information on actual parental behaviors. Unfortunately, such information is largely unavailable, perhaps mainly because communication about sex between parents and young people is difficult and emotive. Research with parents of young people without disabilities has suggested that they often feel they have inadequate knowledge to answer their children's questions appropriately and that their children already know too much or too little (Keshav & Huberman, 2006). In turn, parents' comfort level and knowledge predicts communication about sexual matters (Byers, Sears, & Weaver, 2008; Jerman & Constantine, 2010).
For parents of young people with ID there is the added concern regarding how their daughters' and sons' cognitive impairments will affect their social and emotional development. Parents of young people without ID may tailor the sex education they provide to their children, depending on what they think their children should know for their age and level of understanding (Walker, 2001). Making such judgments may be particularly challenging when children have difficulty learning and retaining new information. Even when communication does occur, it may not always be relevant to the young person's needs. Shepherdson (1995) reported that young people with Down syndrome were better informed about topics such as pregnancy and birth and that matters such as sexual intercourse were arguably less relevant or important to them. It may be easier for parents to talk with their children about biological facts than about the more social and emotional aspects of sexuality, such as relationships and intimacy (Feldman & Rosenthal, 2000). This also relates to parents' fears that their children are potential targets for sexual abuse or exploitation. Parents may be acutely aware of the rights and needs of their sons' and daughters' to have sexual experiences, yet they are encouraged to maintain a protective stance as their children may be more vulnerable (Almack, Clegg, & Murphy, 2009; Pownall et al., 2011). This is particularly challenging for mothers of daughters, who often have additional concerns about their daughters' potential vulnerability and risk of pregnancy (Almack et al., 2009; DiIorio, Pluhar, & Belcher, 2003; Pownall et al., 2011).
In terms of gender, communication between parents and their children is likely to be easier when the dyads are the same sex (DiIorio, Pluhar, & Belcher, 2003; Jerman & Constantine, 2010; Swain, Ackerman, & Ackerman, 2006). For example, mothers report feeling more comfortable talking with their daughters about sex, using their own experience of sexual development to guide discussions (Walker, 2001). Other demographic characteristics of parents and children have been associated with communication about sex. Factors associated with increased likelihood that parents would talk about sexual matters with their children include parents being of a younger age (Cuskelly & Bryde, 2004; Karellou, 2003) and the increasing age of the children (Byers et al., 2008; Eisenberg, Sieving, Bearinger, Swain, & Resnick, 2006; Walker, 2001). Findings reported in studies examining the association between sexual communication and other parental demographic variables, such as parental deprivation, religiosity, and education have been inconsistent (DiIorio et al. 2003; Jerman & Constantine, 2010; Swain et al., 2006).
Despite research highlighting the additional difficulties that families of young people with ID may face, researchers have rarely sought the perspectives of these parents or compared them with those of parents of typically developing adolescents. As discussing sexual matters is difficult for any parent, the main aim of the present comparative research is to identify the particular challenges for parents dealing with the developing sexuality of their children with ID. We included a focus on gender because this has been identified as a salient variable relating to parental attitudes and behaviors. In addition, because previous studies have shown that mothers are more likely to communicate with their children about sexual matters than are fathers (DiIorio et al., 2003), only mothers were interviewed. Although we acknowledge that fathers' views are important, it was beyond the scope of the present study to elicit both parents' perspectives.
We hypothesized that there would be more barriers to parent–adolescent discussions about sex for mothers of young people with ID, accompanied by more cautious attitudes and beliefs. We expected that mothers would be less confident and comfortable about discussing sexual matters with their offspring who have ID, with these young people also finding it more difficult to understand sexual topics. We also expected that mothers of offspring with ID would attach less importance to discussing sex with their young people and to have discussed the topics in less depth. Owing to the importance of gender in sexuality research, gender of the adolescent was included as an independent variable in the analyses and interactions between participant groups. Finally, other variables shown previously to relate to parent–adolescent communications about sex, including mothers' and offspring's age, mothers' social class, occupation, religiosity, and marital status were controlled for in statistical analyses where relevant.
Participants were mothers of young people with mild ID (ID group: n = 30) and young people without ID or other disabilities (ND group: n = 30) aged between 16 and 24 years. Mothers were initially identified through a national voluntary, nonprofit organization. To ensure that mothers were able to discuss sexual matters with their children, they were selected if their daughter or son was able to provide a verbal account of everyday events in her or his life and to describe her or his feelings. The mothers' demographic details are provided in Table 1. Two of the offspring in the ID group had been adopted at an early age, and all of the other young people were living with their biological mothers. In the ID group, 4 adolescents had an additional physical disability and 3 had a sibling who also had ID. All the adolescents lived at home with their mothers and were attending school or post-16 education colleges, with the exception of one son with ID who was living in full-time residential care. These mainstream colleges of further education that the young people attended offer specialist courses for people with intellectual disabilities. To assess whether the families of young people with or without ID differed on demographic variables, a series of t tests and Mann–Whitney tests were performed. The groups were similarly distributed across the neighborhood deprivation categories. However, mothers of young people with ID were more likely to be in a lower social position, based on their occupation (z = 2.181, p = .029). No other demographic differences were apparent between the two groups.
A brief demographic questionnaire was used to record information about family composition, age, gender, and religious affiliations of immediate family members. Deprivation was defined by using the individual's postal code to index neighborhood deprivation as a measure of socioeconomic status (Carstairs & Morris, 1991). Deprivation categories (DepCats) range from 1 (affluent) to 7 (severe deprivation). Social position was also measured by using the seven-category version of the UK National Statistics–Socio-Economic Classification (NS-SEC; Rose & O'Reilly, 1998; Rose & Pevalin, 2003). Mothers were assigned to a NS-SEC social class on the basis of their present or most recent occupation. Partly as a validity check on the group variable, mothers also completed the short form of the Adaptive Behavior Scale: Part 1 (Hatton et al., 2001; Nihira, Leland, & Lambert, 1993) to assess their offspring's actual level of support needs. This confirmed that the ID group had lower levels of adaptive functioning than did the ND group on both the Community Self-Sufficiency subscale (ID: M = 83.3, SD = 30.4 vs. ND: M = 142.6, SD = 5), t(58) = 10.54, p = .001, and the Personal–Social Responsibility subscale (ID: M = 41.6, SD = 7.9 vs. ND: M = 55.4, SD = 3.9), t(58) = 8.52, p = .001.
Mothers' attitudes and beliefs concerning sexuality questionnaire
The questionnaire was developed by the research team to collect data about mothers' attitudes, beliefs, and behaviors regarding their offspring's developing sexuality. The structure was informed by Weaver and colleagues' (2002) questionnaire on the attitudes of Canadian parents, teachers, and adolescent pupils toward sex education (Byers et al 2003; Cohen, Sears, Byers, & Weaver, 2004). In-depth qualitative interviews with mothers (Pownall et al., 2011 also helped to ensure that the questionnaire addressed the mothers' concerns rather than the researcher's preconceptions about this topic (Borkan, 2004). Once developed, the questionnaire was piloted with 4 mothers: 2 who had children with disabilities, and 2 who had children without disabilities. To encourage accurate and honest responding from mothers, and to avoid questions being too personal or threatening, the questionnaire began with general and conventional topics and introduced more private and sensitive topics toward the end. This also reflected a developmental progression, beginning with questions relevant to younger adolescents (e.g., naming body parts, puberty) and moving toward topics relevant to older adolescents (e.g., dating behaviors, sexual pleasure).
The questionnaire consisted of four sections. Section A included two open-ended questions eliciting mothers' views on where their child had accessed information about sexual matters and who usually initiated discussions about sex topics. Mothers provided responses on a 5-point Likert-type scale (1 = strongly disagree, 5 = strongly agree) for the questions in all the remaining sections. Section B concerned who the mothers felt should provide their child's sex education. Mothers were asked to select from a list of five predefined categories: mother, father, other family members, child's school/college, and health professionals. Mothers then provided a single-item self-evaluation of the sex education that they had themselves provided for their child (1 = poor, 5 = excellent).
Section C examined mothers' experiences of providing sex education. Mothers were presented with a list of 18 sexual health topics, including puberty, reproduction, peer pressure, contraception, intimacy, pornography, and masturbation and were asked if they had discussed the topic with their child and, if so, at what age they first did so. Five-point Likert-type scales were then used to elicit information on (a) the depth at which the topic had been discussed, (b) the perceived importance of discussing the topic with their child, (c) how confident they felt discussing each topic, (d) how comfortable they felt discussing each topic, (e) how comfortable they perceived their child would be discussing each topic, and (f) how difficult they thought their child would find the topic to understand. Because not all mothers had discussed all of the topics with their child, we calculated weighted mean scores for the age at which topics had been discussed, level of detail, perceived importance, confidence and comfort, and children's perceived difficulty and comfort. To ensure that these weighted mean scores were based on sufficient ratings, only mothers who had discussed six or more of the topics were included in analyses to calculate mean scores for each of these variables (4 mothers from the ID group and 1 from the ND group data were excluded in this way).
In Section D, mothers were presented with 26 statements about sexuality and their child, 10 of which related to their child engaging in a sexual behavior, and were asked to rate their level of agreement with each statement. Each item was scored on a 5-point disagree–agree continuum and was coded so that a high score indicated a contemporary attitude, and a low score indicated a more traditional attitude toward the sexuality of people with ID. Example items included the following: “My child is more likely to be taken advantage of than other children,” “My child is not ready to learn about sexual issues,” “I am unhappy for my child to have a girlfriend/boyfriend,” and “I am happy for my child to have a sexual relationship.”
Cronbach's alpha coefficients were calculated for attitudes toward sexuality and attitudes toward sexual behavior scales (both in Section D). Six items were deleted because of poor initial corrected item total correlations. The revised scales had good reliability (αs = .86 and .81, respectively). Items relating to mothers' beliefs about who should be responsible for the sex education of their offspring and where their children had accessed information about sexual matters were treated as individual items because they were not designed to measure an overall construct. Interrater agreement for coding of the two open-ended questions was calculated for all of the questionnaires by using Cohen's kappa (Cohen, 1960), yielding reliability coefficients of .94 for the source of the information and .96 for the person who initiated conversations about sexuality topics.
Perceived sources of practical and emotional support
The Family Support Scale (FSS; Dunst, Trivette, & Jenkins, 1984) was adapted and used to assess both the availability and helpfulness of sources of support for mothers regarding their child's sexuality. The FSS includes 18 items rated on a 5-point Likert-type scale, ranging from 1 (not at all helpful) to 5 (extremely helpful). The scale has satisfactory reliability (internal consistency .77, and test–retest reliability .91; Dunst et al., 1984) and has been used frequently in research with families of young children with disabilities (Dunst et al., 1984; Sheeran, Marvin, & Pianta, 1997). We derived two sets of scores: (a) the number of informal sources (spouse, family, friends, other informal supports) and a weighted score for the mean helpfulness of informal sources and (b) the number of professionals and services available to the mothers and a weighted score for the mean helpfulness of support from professionals and services. Mothers were asked to consider support specifically in relation to their child's sexuality and not general support for their family.
Ethical permission for the study was obtained from the ethics committee of the University of Glasgow, Scotland. The majority of mothers were interviewed in their family home, although four interviews with mothers from the ND group were conducted over the telephone at the mothers' request. The rating scales used in the interview were sent to the mothers in advance of the telephone call. Due to the sensitive nature of this topic, all questionnaires were administered verbally and completed by the interviewer. This provided mothers with an opportunity to justify or clarify their responses and ensured that the issues being investigated were relevant and that all significant information was included. Although it is recognized that sexuality is an emotional topic for many mothers, none requested that the interview end prematurely. It is also important to note that the interviews were carried out by a female researcher (first author) with considerable experience of carrying out interviews on the topic of sexuality with young people who have ID. This meant that she was comfortable talking about this subject with the mothers.
The interviews ranged between 24 and 105 minutes, and answers were audio recorded and later written onto the questionnaire response sheets or transcribed verbatim (for the open-ended questions). After the interview, the recorder was switched off and participants were given an opportunity to discuss the topics further. The majority of mothers wanted to continue talking, often reflecting upon what had been discussed, as well as how the data were to be used. The Family Support Scale was administered after the main sexuality questionnaire, followed by the Adaptive Behavior Scale: Part 1.
The main statistical analyses focused on the specific effects of group, gender, and their interaction in four main areas regarding mothers' (a) beliefs relating to sex education and their offspring, (b) experiences in delivering sex education to their children, (c) attitudes toward sexuality and their offspring, and (d) social support for dealing with their offspring's sexuality. These analyses were based mainly on 2 (ID vs. ND) × 2 (Child Gender: Male, Female) analysis of variance models. Before conducting the main statistical analyses, continuous variables were tested for their suitability for parametric statistical analysis. This was achieved through a series of one-sample Kolmogorov–Smirnov tests where each variable was compared with a normal distribution. The majority of these tests were nonsignificant, indicating that the study variables approximated normal distributions. Scores for perceived child's difficulty in understanding topics and mothers' beliefs about who should be involved in the sex education of their offspring were not normally distributed, and for these variables appropriate nonparametric statistics were applied and are reported below.
Mothers' occupation was also explored as a covariate because the two groups differed on this variable. The results of these additional analyses are reported below only when the overall pattern of findings is affected. Finally, individual item-level analyses are reported below where these add to understanding of the broad effects. Although multiple testing increases Type I errors, the present research is exploratory and thus it is important to minimize the Type II error rate.
Mothers' Beliefs About Sex Education
Table 2 shows data on mothers' beliefs about where their child accessed information about sexual matters and who usually initiated discussions about sexual topics, who mothers felt should provide their child's sex education, and their self-evaluation of the sex education they had provided for their child. Mothers of young people with ID thought their children were less likely to have obtained information about sexual matters from “leisure sources,” such as their peers or social groups, χ2(1, N = 30) = 17.38, p = .001. In terms of gender, mothers of daughters from both groups were more likely to report that their offspring had sought information from a professional than did mothers of sons, χ2(1, N = 30) = 6.41, p = .001.
In terms of who initiated discussions about sexual matters, this differed between the two groups, χ2(2, N = 27) = 10.04, p = .007. The adjusted standardized residuals showed that the mothers of young people with ID were more likely to initiate discussions about sexual matters with their child, whereas parent–child communications for young people without disabilities were more likely to be mutually initiated. Mothers of young people with ID believed the school to have a greater responsibility in delivering sex education to their child, U = 309, p = .016. Both groups thought that fathers were more important in providing sex education to sons than to daughters, U = 221, p = .023. Despite these differences, mothers tended to evaluate the quality of the sex education they had provided for their children similarly, Group: F(1, 56) = 0.70, p = .409; Gender: F(1, 56) = 1.41, p = .240; Group × Gender interaction: F(1, 56) = 2.104, p = .152.
Mothers' Experiences of Delivering Sex Education
Table 3 shows the weighted mean scores concerning mothers' experiences of delivering sex education to their child.
Number of topics discussed
Mothers of offspring with ID had spoken about fewer sexual topics overall than did mothers with offspring without disabilities, F(1, 56) = 5.69, p = .021. Mothers of daughters tended to discuss more topics overall than did mothers of sons, F(1, 56) = 4.80, p = .033.
Age at discussion
Mothers of young people with ID generally discussed sexual matters with their child at a later age than did mothers of offspring without disabilities, F(1, 51) = 4.29, p = .044. The most marked differences at the individual item level were in relation to identifying body parts (p = .007), puberty (p = .000), reproduction (p = .026), and sexual behaviors (p = .044). However, when mothers' occupation was controlled for, the overall group difference for age when discussions took place reduced and became nonsignificant, F(1, 50) = 2.87, p = .096. In general, females tended to be older than males when discussions were initiated, F(1, 51) = 16.17, p < .001, in particular in relation to reproduction (p = .005), abstinence (p = .001), birth control (p < .001), dating (p = .027), attraction (p = .035), communication about sex (p = .034), sexual behaviors (p = .050), body image (p = .042), and media (p = .014). This gender pattern was similar for both mothers of young people with and without ID (i.e., there were no Group × Gender interactions).
Importance of discussing sexual health topics
There were no overall group or gender differences in beliefs held about the importance mothers attached to discussing sexual health topics, Group: F(1, 51) = .96, p = .333; Gender: F(1, 51) = 1.75, p = .192. However, closer examination of the data suggests a more complex picture. Figure 1 shows the mean importance mothers attached to discussing each of the topics, suggesting that the topics thought to be important differed for mothers of offspring with disabilities and those of offspring without disabilities. Some of these differences were also statistically significant when individual items were analyzed. For example, mothers of offspring with ID attached less importance to discussing abstinence (p = .018), peer pressure (p < .001), and sexually transmitted diseases (p = .006) than did mothers of offspring without disabilities, who in turn believed that discussing sexual pleasure (p = .008) and masturbation (p = .009) were less important. In addition, there were a few topics mothers believed were more important to talk to daughters than to sons about, namely puberty (p = .002), abstinence (p = .004), and peer pressure (p = .039), and this was most marked for mothers of daughters without disabilities.
Level of detail
Mothers also discussed sexual matters with their offspring with ID in less detail, F(1, 51) = 4.60, p = .037, particularly in relation to peer pressure (p = .033). However, when mothers' occupation was controlled, this main effect was no longer significant, F(1, 50) = 1.49, p = .227. Mothers of daughters reported having discussed sexual matters in greater detail, F(1, 51) = 5.93, p = .018, in particular in relation to puberty (p = .012) and attraction to the opposite sex (p < .001).
Mothers' confidence and comfort
For mothers' confidence and comfort in discussing sexual health topics with their child, group and gender differences were minimal. Unexpectedly, there was a trend for mothers of young people without disabilities to be less confident or comfortable in talking about some sensitive topics, in particular sexual pleasure (p = .018) than were mothers of young people with ID.
Children's difficulty in understanding and comfort
Mothers also perceived that their sons and daughters with ID found the sexual topics more difficult to understand (U = 24, p = .001), although they did not anticipate that their child would be any more uncomfortable or embarrassed discussing these topics, Group: F(1, 51) = 0.08, p = .784; Gender: F(1, 51) = 1.43, p = .707; Group × Gender interaction: F(1, 51) = .001, p = .985.
Mothers' Attitudes Toward Sexuality
The mothers with offspring with ID were more cautious in their attitudes toward sexuality and their child, with a low score indicating a more cautious attitude, ID group (M = 2.41, SD = 0.62) vs. ND group (M = 3.28, SD = 0.42), F(1, 56) = 38.32, p = .001, although overall there was no Gender × Group interaction. The most marked difference was on the item referring to their perception of their child's vulnerability to sexual abuse, F(1, 56) = 171.7, p < .001. For this item, there was an interaction between gender and group, F(1, 56) = 4.23, p = .044: Mothers of daughters with ID were the most likely to agree that their daughters were more vulnerable than other young people.
Other items for which there was a large discrepancy between groups concerned the young people's ability to make responsible decisions about contraception and sexual relationships, readiness to learn about sexual matters, and desire for intimate relationships, about which mothers of young people with ID held less positive attitudes (all significant at p = .001). With regard to beliefs about their offspring's desires to have more intimate relationships, there was also an interaction between gender and group, F(1, 56) = 5.68, p = .021. Mothers of daughters with ID were more likely to believe their child had less desire to have relationships than mothers of sons with ID, whereas the reverse was found in the ND group.
Mothers of young people with ID also had more cautious attitudes toward their child engaging in various sexual and relationship behaviors, ID group: (M = 2.82, SD = 0.69) vs. ND group: (M = 3.35, SD = 0.41), F(1, 56) = 4.65, p = .035. Some of these differences were also statistically significant when individual items were analyzed. For example, mothers of young people with ID were more negative toward their child engaging in sexual intercourse, F(1, 56) = 4.34, p = .042, getting married, F(1, 56) = 9.458, p = .003, and having children of their own, F(1, 56) = 37.08, p < .001). However, when mother's occupation was entered as a covariate, the main effect of group in relation to attitudes toward sexual and relationship behaviors was no longer significant, F(1, 55) = 1.12, p = .312.
Sources of Support
Mothers of young people with ID reported having fewer sources of informal support, ID group: (M = 6.14, SD = 3.2) vs. ND group: (M = 9.33, SD = 2.7), F(1, 55) = 17.29, p = .001, but more sources of formal support in relation to sexual matters, ID group: (M = 2.31, SD = 0.85) vs. ND group: (M = 1.82, SD = 0.6), F(1, 55) = 6.09, p = .020. For both types of support, mothers of children with ID reported that the supports tended to be more helpful than did mothers of children without disabilities, ID group: (M = 1.93 and M = 2.21, informal and formal sources respectively), F(1, 55) = 12.56, p = .001 vs. ND group: (M = 1.33 and M = 1.44, informal and formal sources respectively), F(1, 55) = 8.43, p = .005. There was a Gender × Group interaction for helpfulness of formal support, F(1, 55) = 4.15, p = .050, indicating that mothers of sons with ID reported finding formal support more helpful.
This research has highlighted that mother–adolescent communication about sex is a challenging and complex undertaking, regardless of whether the adolescent has a disability. It is encouraging to note that both groups of mothers placed similar importance on their role in educating their offspring about sex. All the mothers also reported being similarly confident and comfortable in discussing sexual matters. However, for mothers of young people with ID in particular, the dissonance between perceived responsibility and what they had actually done highlighted the unique challenges and support needs that these mothers faced in dealing with their child's developing sexuality.
Overall, mothers of young people with ID had spoken about fewer sexual topics with their offspring, began these discussions at a later age, and when discussions did occur, these tended to be in less detail than did those of mothers of offspring without disabilities. This was not surprising, given that mothers of an adolescent with ID were more cautious in their attitudes toward sexuality and their child, believing that their child was not interested in developing sexual relationships and had fewer sexual feelings than do adolescents without disabilities. Mothers were particularly concerned about their offspring's vulnerability to exploitation and abuse, believing that they were unable to make sensible or informed decisions around sexual relationships and contraception. It is possible that the mothers' desire to provide their child with information was tempered by their wish to protect them from harm. Indeed, mothers of young people with ID placed more emphasis on discussing safety issues with their child than any of the other topics. Peer pressure, contraception, and sexually transmitted diseases were considered by mothers of offspring without disabilities to be among the most important topics to discuss with their child. However, these topics were considered the least important and covered in less detail by mothers of offspring with ID. Even when the mothers of young people with ID indicated they had broached these topics with their child, the content of their discussions was different than those described by the group of mothers of young people without disabilities. For example, in relation to contraception, comments made by some of the mothers of young people with ID suggested that discussions about contraception were not related to sexual activity but had been made to help manage their daughters' menstrual problems. In contrast, mothers in the ND group reported discussing contraception to help their young people to stay safe and make informed decisions if and when they became sexually active. Thus, mothers' perceived role as sex educator seemed to coincide with their wider expectations for their adolescents as they entered adulthood.
Although mothers of young people with ID expressed the need to protect their child from harm, avoiding talking about sexual matters was not simply a means of sheltering their offspring from the “world of sex.” Their responses indicated awareness that their offspring had limited opportunities to develop social experiences and explore their sexual identities. Consequently, mothers may have felt that providing such information would be meaningless and potentially anxiety provoking to their child. This was complicated by the fact many mothers were uncertain about what information their child could understand or cope with. This was also reflected in mothers' attitudes toward their offspring's sexuality, believing that their child did not have the same sexual feelings as other young people their age and that they were less interested in developing intimate relationships. Although researchers have found that parents of adolescents without disabilities also report uncertainty over when to start talking to their child about sex, their offspring's increasing independence from the family may act as an indicator that their child is ready (Pownall et al., 2011). As children mature, the nature of communication about sexuality also changes. The majority of mothers in the ND group stated that discussions about sex reflected a joint exploration of views and ideas. This was not the case for young people with ID, who rarely initiated discussions. It is likely that their continuing dependence on others for support and their consequent lack of power meant that discussions remained childlike, with the parent providing the facts and the child listening. Because of the difficulty that mothers of young people with ID have in gauging when their child is ready to learn about sex, it is perhaps unsurprising that they tended to wait until their children were older before discussing these matters.
Contrary to our hypotheses, mothers in the ID group did not display any more discomfort or lack of confidence than did mothers of offspring without disabilities. This could possibly be related to the fact that mothers of young people with ID had less experience in discussing sexual matters with their children, and, for some, anticipated a less pressing need to talk about such matters in the future. Consequently, it may have been difficult for them to predict how they would actually manage such situations if they did arise. This was not the case for many of the mothers in the ND group, who were currently in the middle of addressing relationship and sexuality issues and were all too aware of the difficult or awkward nature of doing so. It has been noted in previous research that parental perceptions of their children's embarrassment may pose another barrier to open dialogue, with adolescents preferring that such discussions did not occur (Cheng & Udry, 2003; Jaccard & Dittus, 1993; Rosenthal & Feldman, 1999). However, mothers of young people with and without ID in the current study had similar beliefs about their child's level of comfort in discussing sexual matters. For mothers of adolescents with ID, this was attributed to the fact that their child did not fully grasp the nature of the topic in question. That is, there may have been an inverse relationship between understanding and comfort.
Results of this study show that mothers' beliefs and experiences relating to mother–adolescent communication are also influenced by the gender of the offspring. In line with findings from previous studies, mothers of daughters reported they had spoken more about sexuality and attached greater importance to most of the topics than did mothers of sons (DiIorio, Kelley, & Hockenberry-Eaton, 1999; Rosenthal & Feldman, 1999; Walker, 2001). This has been attributed to young women's' greater need for information, for example, in relation to protection against sexually transmitted diseases/infections and avoiding pregnancy. Although mothers of daughters with ID believed their offspring to be most vulnerable to abuse, this did not mean they had spoken to their child about sex in any greater detail. The fact that gender differences were less marked for mothers of young people with ID suggests that different norms were being communicated to many of the young people with disabilities, particularly young women, who may be missing out on important sexual information and experiences. Mothers' occupation was an important factor in determining mother–child communication about sex. Mothers with unskilled occupations tended to have more conservative views toward their child engaging in sexual behaviors and, in line with this, reported discussing sexual matters with their child at a later age and in less depth. This is consistent with previous research findings that more liberal attitudes toward sexuality and intellectual disability are associated with higher educational attainment in both staff and the general public (Brantlinger, 1983; Murray & Minnes, 1994; Karellou, 2003, 2007).
Implications for Practice and Future Research
Gaining insight into possible determinants of the communication process is important because there seems to be a gap between self-reported desires of parents and adolescents to discuss sexual issues together (Morrison, 2006) and actual parent–adolescent communication about sexuality. Many of the mothers of young people with ID stated that they had not addressed sexual matters with their child as they felt these issues had not yet become relevant. They did not want to confuse or frighten their child by talking about sex too soon. Nevertheless, children are learning about sexuality all the time, through sexual images and messages in the media and through observing other people's behaviors. They will learn about sex whether it is discussed or not. By not speaking to their children about sex, a parent may be, inadvertently, conveying that sexual expression is not appropriate (McCabe, 1999; McCabe, Cummins, & Reid, 1994). If young people anticipate others to have negative attitudes concerning their sexuality, they are unlikely to feel comfortable raising their concerns or worries, perceiving sexuality as something embarrassing and shameful (Pownall, 2010). Thus, mothers may need support in being more proactive in discussing sexuality with their child, understanding that just because their children do not ask questions, this is unlikely to mean they do not have any questions or that they are not interested in sex. It may be helpful to emphasize to parents that discussing sexuality does not equate to a readiness to engage in sexual activity.
The risk of delaying or not planning sex education is that it will end up as a “crisis intervention,” where issues become too overwhelming for parents to cope with. Parents need to be supported in providing sex education to their children from a young age, providing them with the opportunities to apply their knowledge and develop skills in everyday situations. This in turn may help young people feel more confident and comfortable in raising their own questions and concerns. As the mothers in the current study, particularly those with daughters, were concerned about their children's vulnerability, it is worth emphasizing that providing information to children from a young age can equip them with the skills and knowledge that can reduce their vulnerability to abuse (McCabe, 1992).
Although the mothers in the current study reported having accessed support from professional organizations, the value of this support lies in it being available before crisis point has been reached. Parents can also gain valuable support from talking with other parents, providing mutual reassurance and practical advice (Garbutt, 2008; Pownall et al., 2011). However, mothers of young people with ID reported having fewer informal sources of support than did mothers in the ND group. This may stem from not only perceived negative attitudes from others about their adolescent's sexuality, but also from the belief that other parents, particularly of typically developing adolescents, do not understand the unique challenges of raising a child with a disability (Pownall et al., 2010). Professionals may play a useful role in organizing groups in which parents can informally network.
Having a partner who also takes an active role in the provision of sex education can be important, particularly for mothers of sons. Although there is evidence that discussions about sex differ between father–child and mother–child (Wight, 1994), we know little about the role that fathers play in the sex education of their children with ID, and this needs to be investigated in future research. The survey instrument developed in the current study could also be used to explore and compare other groups of parents' attitudes and beliefs relating to sexuality and sex education.
This research was supported by the Economic and Social Research Council (Grant: res-000-22-3124). The authors express their gratitude to the participating families for their time and cooperation.
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