A school-based intervention can promote insights into future parenting in students with intellectual disabilities—A Swedish interview study

Background: Few studies have focused on how youth with intellectual disability (ID) can be facilitated in reasoning about future parenthood. This study aimed to explore an intervention using the Toolkit “Childrenwhat does it involve?” and the Real-Care-Baby (RCB) simulator among students with ID. Method: Sixteen students with ID who participated in an intervention with 13 educational sessions, with adapted knowledge and a three-day caring session with the RCB simulator, were individually interviewed after the intervention. Qualitative content analysis was used. Results: Participants reported that the intervention provided important thoughts and insights on future parenting, providing a basis for informed decisions. The ability to be responsible and have autonomy in life and in caring for a future child were described as important. Conclusion: After an intervention, with structured and adapted knowledge and experiences of the RCB simulator, students with ID reported an understanding of the importance of informed decisions about future parenthood.

negatively affects their public health care .
The substantial number of teenage pregnancies in young girls with ID may be due to a more substantial proportion of unplanned pregnancies, not knowing what parenthood entails (Höglund et al., 2012a(Höglund et al., ,2012bSedgh, Finer, Bankole, Eilers, & Singh, 2015).
In general, early pregnancy implicates difficulties in the parenting role and increased risks for the mother (e.g., the risk for poor mental health). In contrast, later pregnancy in life is a protective factor with less risks (Wahn & Nissen, 2008). Therefore, the main priority is to avoid teenage pregnancies and postpone parenthood, particularly in young persons with cognitive limitations.
Children of parents with cognitive limitations are more likely to be placed in foster care, with some studies reporting that 30%-60% of these children are placed in out of home care (Booth, McConnell, & Booth, 2006;Emerson, Davies, Spencer, & Malam, 2005;Tøssebro, Midjo, Paulsen, & Berg, 2017). Mothers with ID experience strong concerns that their children will be placed in foster care (Höglund & Larsson, 2013). Mothers with ID with children in care experience a threat to their identity and a need to alter their maternal role.
The need for support in these situations is rarely met and often not adapted to mothers' cognitive abilities .
Pregnant women with ID prefer support from caregivers perceived as non-judgemental and tend to avoid contact with persons perceived as a threat, such as authorities (Potvin, Barnett, Brown, & Cobigo, 2019).
Further contributing to risk in the parenting role is that women with ID have difficulties in creating long-term relationships and establishing a family (Murphy & O'Callaghan, 2004). Previous studies have confirmed that women with ID are less likely to cohabit with the child's father compared to women without ID (Höglund et al., 2012a(Höglund et al., ,2012b. Women with ID are at greater risk of being exposed to abusive treatment and violence, and thus, they are a vulnerable group and have a higher risk of exploitation (Kuosmanen & Starke, 2015).
Considerable knowledge exists (e.g., step-by-step instructions or pictures depicting daily routines and work tasks) about how to adapt the information for people with ID (Azar, Maggi, & Proctor, 2013;Gillespie, Best, & O'Neill, 2012;Pearson, Chaisty, & Stenfert Kroese, 2019). Behavioural-based interventions and methods used in a structured manner have proven to be more effective in facilitating parental skills than reading in tutorial booklets and ordinary, non-adapted support from social services (Azar et al., 2013;Feldman, 1994;Wade, Llewellyn, & Matthews, 2008;Wilson, McKenzie, Quayle, & Murray, 2014). Moreover, these studies have demonstrated the importance of providing real experiences in parenting skills to complement adapted knowledge as a basis for informed decisions and insights. A previous school-based pilot study found that adapted knowledge about parenting can be combined with actual experiences in caring for a Real-Care-Baby (RCB) simulator and the combination can be used for people with ID (Janeslätt, Larsson, Wickström, Springer, & Höglund, 2019).
The RCB simulator was initially designed to stimulate discussion about the pros and cons of having a baby and thus contribute to informed decisions about whether to have a child and, if so, when.
Evaluations have focused on different outcomes, overall performance, contraceptive use, teenage pregnancies and attitudes about parenthood. One Australian study showed increased teenage pregnancies in girls aged 13-15 years who had cared for the simulator during a weekend compared to a control group (Brinkman et al., 2016). The early age of the girls and choosing the weekend for the intervention could have contributed to the results. We can also note that in the study of Brinkman et al. (2016) complimentary education about what parenting entails was not provided. A Cochrane review of 53 randomized controlled trials concluded that programmes with a combined educational and contraceptive component reduced unintended teenage pregnancy. That study underlines the importance of providing an educational component (Oringanje et al., 2016). Five studies with mainly older adolescents found that attitudes to parenthood changed after caring for an RCT simulator.
The participants learned about the responsibilities, difficulties and challenges in caring for babies (de Anda, 2006;Jang & Lin, 2016;McCowan, Roberts, & Slaughter, 2009;Roberts & McCowan, 2004;Wistoft & Stovgaard, 2013). de Anda (2006) reported a significant increase in the age at which the students wished to have a child after caring for the RCB simulator. Jang and Lin (2016) concluded that RCB simulators could be used in family life education to help students obtain concrete caring experiences and that gave information into unwanted pregnancies. Studies combining the RCB simulator with education about parenting reported that the attitudes towards sexuality and parenting issues could be markedly modified (McCowan et al., 2009;Roberts & McCowan, 2004). Thus, some studies have highlighted the need to combine the RCB simulator with education about parenthood.
No study (except the pilot study by  has evaluated the RCB simulator in young individuals with ID. Using an RCB simulator was a way to give young persons with ID concrete experiences of the basic needs of a child. The education material used in the pilot study was created for persons with ID in the Netherlands. This educational material was referred to as the parenting Toolkit "Children-what does it involve?" In , the same parenting Toolkit was used to provide students with ID adapted knowledge while the RCB simulator was applied to provide experiences of caring. In the pilot study, six students (age 17-20 years) in special upper secondary school for students with ID received eight educational sessions during school hours, which were combined with a caring session with the RCB simulator for 3 days and nights at home. The findings indicated a positive experience of the intervention, new insights into the challenges associated with parenthood, a low overall performance in caring for the RCB simulator but without interfering with the students' general sense of self-efficacy .
The present study expands on past research through a combination of extensive and adapted education on parenting and practical care with an RCB simulator in young individuals with ID. More knowledge is needed on how young people with ID think and reason about future parenthood and how their need for knowledge can be met with adaptive interventions. This study aimed to explore the views of young people with ID after completing a structured education programme for parenting combined with an RCB simulator.

| Procedure and participants
The intervention study was conducted at five special upper secondary schools for students with ID in mid-Sweden during 2018. The participating schools formed groups comprising 2-10 participants who voluntarily participated in the intervention. In all, 25 students participated in the intervention. Of the 25 participants, 20 completed the intervention and 16 (80%, nine girls/seven boys) of those gave informed consent to be interviewed. All participants (n = 16) had mild to moderate ID, were 16-20 years old and attended the second to fourth year in special upper secondary schools. Sixteen individual interviews were conducted and all but one was conducted in quiet rooms at the schools during school time. One interview was done online.

| Intervention
The intervention consisted of 13 weekly educational lessons (1.5 hr) using the Toolkit "Children-what does it involve?" (ASVZ) at school and a 3-day and night caring session with the RCB simulator. The RCB simulator was taken home throughout the 3-day intervention.
The teachers or healthcare personnel at the schools gave lessons and held discussions with the students. The lessons were initiated with discussions based on cards that were part of the toolkit called The caring part of the intervention included introducing how to care for the RCB simulator and ran parallel to the first five lessons.
A handbook with pictures supported the education in caring. This handbook introduced concrete situations associated with the care of the RCB simulator (e.g., rocking, changing a diaper and bottle-feeding) with supported easy-to-read text. From lesson six, the participants took turns to take the RCB simulator home for 72 hr. The RCB was programmed for "baby-sitting" during school hours. Thus, the students would take turns bringing the RCB simulator home. The students were in school during the daytime and cared for the simulators after school and all night. The RCB simulator has an average weight and size of a 3-month-old infant (boy or girl) and can have different ethnic looks to their faces. The simulator can signal basic needs that have to be met, such as hunger, burping, diaper changing and rocking. The simulator's level of care is registered, and after the end of the 3 days, a report is generated with data on how well the carer has responded to the simulator's needs. Probing questions ("tell me more about it") were used to elicit the participants' descriptions of the Toolkit, RCB simulator and their thoughts concerning future parenting. Because the goal was to explore the participants' experiences, the interviews were kept informal and conversational. All interviews were transcribed verbatim.

| Ethical approval
The study was approved by the Regional Ethical Committee in Uppsala, Sweden (Dnr: 2016/16), and ethical matters were considered throughout the study. According to the Swedish guidelines for research involving children, parental consent is not usually needed for children aged >15 years. However, because our participants had ID and might be more vulnerable than young people from the general population, parental consent was obtained. Thus, both the participants and their parents signed an informed and written consent form. In addition, because the RCB simulator was taken home, we obtained the parents' consent. Participation in the study was voluntary and confidential, and the participants were told that they could withdraw from the study at any time without explanation. All participants had the opportunity to ask questions, both before and after RANDELL Et AL. the interview. The interviews concluded by asking the participants whether they wanted to discuss anything that had emerged from the interviews that had triggered unwanted feelings. No participant reported negative feelings.

| Data analysis
Qualitative content analysis was used to analyse the data (Graneheim & Lundman, 2004;Krippendorff, 2018). Such an approach does not have the priority to find a profound implication but rather to present a full description of the participants' comments during the interviews (Graneheim & Lundman, 2004). All interviews were read thoroughly to gain a sense of the whole and analysed manually and initially independently. Each interview was then divided into meaning units that were condensed to shorter units while staying close to the empirical data throughout the analysis process. The analysis was done inductively, creating codes while preserving the core content. Next, the codes were grouped into sub-categories and mutually exclusive categories, and finally, an overarching theme emerged ( Table 1). The analytical process moved bi-directionally between the interview data, codes and categories to ensure trustworthiness. The judgement of trustworthiness is based on credibility, dependability, transferability and confirmability (Lincoln & Guba, 1985). All codes, sub-categories and categories were discussed, developed and analysed together within the research team until consensus was achieved. The coders were the same individuals who conducted the interviews.

| RE SULTS
The analysis resulted in 10 sub-categories, three categories and one theme describing the participants' opinions and experiences.
Combining theoretical and adapted knowledge and experiences promotes the students' thoughts and insights into future parenting was the overarching theme formulated to illustrate the central interpreted meaning (Table 1).
Examples of meaning units, condensed meaning units, codes, sub-categories, categories and the single theme are summarized in Table 2.

| Students' opinions of the educational material
Overall, the students described the educational material in favourable terms. They thought the lessons encouraged transparent discussions about their views and thoughts. They were engaged and stated that it was pleasant, exciting and informative to work together during these educational sessions. The students expressed a desire for these lessons and described them positively. Only a few students reported that the educational material was not necessary.

| Students' views of the Toolkit
The students indicated that the Toolkit was important and felt they learned many new things about the consequences of having a child in relation to time, money, skills, relationship and housing. They appreciated working with pictures as they facilitated their discussions about practical settings. From the peer-group discussions, the students obtained new thoughts and insights.
"It was exciting to hear the thoughts of others and to work together." "The discussions we had together were amusing and honest." TA B L E 1 Examples of the analytical process from meaning unit to theme

| Other students' needs for the Toolkit and RCB simulator
Some students recommended that all students in upper secondary school should take care of the RCB simulator, whereas others considered that this session should be performed at younger ages.
"Other students need to take part in this educational material."

| Students' prior knowledge
The students expressed that most of the educational material was new information. One student felt she already knew everything before the intervention, but later realized it was not the case. Another student remarked that her teacher was surprised by her high level of knowledge. A third student lacked prior knowledge but learned a great deal from taking care of the RCB simulator.
"I thought I knew everything, but in reality, I only knew the half of it."

| Students' experiences and insights on taking care of the RCB simulator
The students felt both positive and negative feelings in taking care of the RCB simulator. They expressed that they gained new insights from the RCB simulator. It was sometimes challenging to take care of the RCB, and several of the students discovered that coping with the RCB simulator during the first night was crucial. They used tangible strategies and systems to satisfy the needs of the RCB. They also expressed feelings of responsibility and being close to the RCB to meet the needs of it. On the other hand, some students noted that caring for the RCB was time-consuming and that this prevented other activities from being prioritized. Few students stopped taking care of the RCB even when they felt overwhelmed.

| Practical things to consider when taking care of the RCB simulator
The students felt that it was important to avoid risky situations (e.g., dropping the RCB simulator onto the floor). Other students mentioned that they had learned to take care of the RCB, pointing out in particular that planning was crucial. Some students identified the importance of receiving family support when taking care of the RCB. One student believed it was essential to have the ability to cope and have patience when caring for the RCB. The students noted that it was possible, although challenging, to combine caring for the RCB with other daily activities. For the participants, having the responsibility for the safety of the RCB had the highest priority. Students emphasized that the RCB could be brought to different activities, but that the parents needed to remember to maintain a high level of responsibility for the child.
"It is very challenging to take care of the Real Care Baby and housekeeping at the same time." "The Real Care Baby could follow [with us] to a party, but the parents should avoid drinking alcohol."

| Positive feelings for the RCB simulator
The students felt content as a parent and thought it was a valuable experience to take care of the RCB at home. In addition, the students said it was important to feel close to the RCB so they could satisfy the RCB's basic needs. It was easier to imagine a child when the weight of the RCB was similar to that of a real child. One student mentioned the importance of having a positive attitude towards the RCB, even when extremely fatigued and stressed. After the 3-day period, some students wanted to be with the RCB and bring it home again. Taking care of the RCB engendered positive responses; however, that did not mean that the students wanted to have a real child now but rather to delay it to a future date.
"It would be pleasant to take care of the Real Care Baby again." "I miss the Real Care Baby and feeling like a mother again."

| Negative feelings towards the RCB simulator
Insomnia was described as a major problem related to the screams of the RCB. A student reported that the act of taking care of the RCB was worse than he expected. Another student said it was difficult to support the RCB's head and that this could lead to feelings of inadequacy, frustration and self-doubt.

| Parenting in the future and its consequences
The students generally voiced appropriate and realistic expectations about parenthood in the future. They expressed positive views about being a future parent but stressed that it was impossible to be a parent at present. They could imagine themselves in a complicated situation in the future, having autonomy as a parent, some form of economic status, in a relationship and having an active role in daily life activities. Some students were cognizant of the importance of protecting future children from threats in the immediate surroundings. The students said that the RCB had helped them to assess the situation before deciding to have children. Only a few students considered themselves as not being able to manage parenthood in the future, which raised feelings of despair and lack of hope.

| Needs of the child
The participants stated that security and peace at home were crucial factors related to the development of a child. They felt that it was pertinent to teach the child the right things to facilitate development but also noted the importance of having basic knowledge and skills that are needed to raise children. The participants said that children have a will of their own that could at times be challenging and complex. Moreover, they learned that children have diverse needs that change over the developmental years.
"A parent needs to know things about a child so that the child can learn the right things." "I did everything with the RCB simulator, but she cried anyway. Babies can cry without [us] understanding the reason."

| Needs of the parents
The participants understood the importance of having financial security and a stable future before having a child. This stability could include having a job, knowledge about parenting skills and receiving support. The participants said that a stable family economy is necessary because raising a child is expensive. They understood that raising a child would affect their spending priorities.

| Significance of the quality of the parents' relationship
The participants stated that love and a strong family relationship are crucial factors in being a good parent. The partners should establish their relationship, have fun and arrange a time to be comforting before they become parents. They also discussed strategies to manage disagreements and avoid destructive conflict. They believed that more time would be available for the partner during the pregnancy compared to after childbirth. The well-being of the partner was more important than where you live.

| Parenting in the future and autonomy
Parenthood was associated with having a relationship based on their decision rather than on the decision of others. Some participants stated that many requirements are associated with being a future parent. Other participants described that parenting was a future possibility (when they were about 30 years of age). Some of the participants underlined that autonomy, housing, routines for housekeeping and work were significant prerequisites before family planning. They would prefer the child to have two parents who support each other, especially if the child were to become ill.
"I want to be a father in the future -I will be so happy." "I have to take care of myself before I have a child." They concluded that the insights gained about future parenting came about not only from the lessons and time spent with the RCB but also from the combination of knowledge and practice.

| D ISCUSS I ON
This study provides a rare insight into the thoughts and views of young people with ID on parenting after completing an educational intervention (i.e., the Toolkit and the RCB simulator). Our findings show that students felt that the combination of theoretical knowledge and practical experiences helped them to grasp the notion of parenting/parenthood. The present results indicate the perceptions and insights about future parenting endorsed after students completed adapted theoretical material and teaching over 4 months in school, as well as taking care of the RCB simulator for 3 days and nights at home.
The duration of the RCB simulation period in this study was similar (3 days and nights) to that used in an Australian study (Brinkman et al., 2016). However, we used weekdays and not the weekend, included older students and an education programme about parenting. Our results indicate that after a program with the RCB simulator and the educational lessons, students expressed awareness about what it means to care for a child. Our study adds new knowledge by providing students' views and experiences with an adapted Toolkit, which should prove useful in future studies on this topic.

| Educational material-Toolkit and RCB simulator
Overall, the participants perceived the educational lessons as positive. They also claimed to have learned a considerable amount from the interaction with their peers. The findings suggest that the Toolkit material was easy to understand and use, and it is in line with earlier research (Azar et al., 2013). Most of the students realized that their prior knowledge in this area was limited. They mentioned that other peers in the same age group would benefit from this educational intervention.
The RCB simulator served as a trigger for the participants to activate strategies to manage safety and meet the needs of the RCB simulator. Some students needed support from their parents, which was also reported in a previous study . The awareness of needing support is important as mothers with ID will require help but are often reluctant to accept it (Höglund & Larsson, 2013).
The participants felt the insights they gained directly resulted from the educational lessons and taking care of the RCB simulator.

| Insights for future parenthood
The ability to care for a (future) child was considered important by the participants in the present study. Most of the participants stated that future parenthood was possible but realized that they needed to mature and establish a stable relationship. Future parenthood has to be based on their own choices and decisions (i.e., an autonomous decision made by the individual). The autonomy includes independent living and housekeeping as well as having employment .
Most of the participants expressed a wish to become parents, although they wanted to postpone parenthood until they reached an optimal age. The finding, that they wanted to wait some years, is interesting as teenage pregnancies entails a greater risk for the mother and the child, and teenage pregnancies are sixfold more frequent in persons with ID (Höglund et al., 2012a(Höglund et al., ,2012b. Preventing unplanned pregnancies is beneficial for both the individual and society, especially given that children of parents with ID are over-represented in foster care (Azar et al., 2013;Tøssebro et al., 2017).
Our participants accentuated the need for a stable and loving relationship before having children. They also thought that relationships and family meant supporting each other, especially during stressful situations such as when a child is sick.
Several of the students were aware of the complexity of being a parent. They emphasized, on the one hand, the happiness of having a child and, on the other, the responsibility of meeting the child's needs and ensuring a cohesive relationship with the partner. Generally, the students pointed out that future parenthood would intrude on their leisure time with friends and limit their freedom. Ambiguous feelings towards parenthood are normal and present in first-time, healthy parents as well (Kurth et al., 2016;Nyström & Öhrling, 2004). Few students considered future parenthood as impossible, although for some the caring experience raised doubts about their ability to be a good parent. The participants also raised feelings of powerlessness and frustration because of not knowing what to do to comfort the RCB. Furthermore, loss of sleep could harm school performance.
The participants' insights (i.e., not to be able to cope with parenting) could cause grief and loss of the desired parenting role. The teachers were trained to respond and guide the students to process different reactions.
Not all students completed the 3-day course with the RCB simulator. In the previously mentioned pilot study , three of the six students found it demanding to take care of the RCB simulator and did not complete the 3 days. However, these three were still able to reflect on their care-taking experiences. Also in the present study, the experience was described as instructive, regardless of whether they completed the 3-day period or not. Students underlined the need of two adults when taking care of a child (i.e., shared responsibility in care-taking). Previous studies have shown that people with ID feel questioned and are reluctant to accept help because of the risk that they will be judged by the authorities about their ability to be caring parents (McGaw & Candy, 2010;Theodore et al., 2018). However, after this experience, the participants in this study were willing to receive help in the future with child care.
Possibly, adapted knowledge acquired early can help overcome some of the fears associated with obtaining support from authorities.

| Strengths and limitations
The study included students with ID participating in a controlled randomized intervention study not reported here. One strength is that the participants were recruited from a wide geographical area that included both sparse and dense populations. A second strength is that the rules for conducting individual interviews and analysing the data were carefully followed. Another strength is that the moderator used pictures of each theme of the Toolkit to guide the interviews. A limitation could be that the interviewer was unknown to the students. A close relationship might allow some types of data to be collected that might not have been possible if the students did not know the interviewer. Still, an unknown interviewer could enable the students to feel free to criticize the intervention. Findings from qualitative studies are not meant to be generalized; however, we believe our findings can be transferred to similar settings. Trustworthiness was enhanced by describing the process in detail so that the reader could follow the analytical process. The categories are presented with quotes and parts of the discussions with the participants. All three researchers collaborated in data collection and in analysis and were involved to negotiate the outcome. Finally, the findings are consistent with those reported in other studies.

| CON CLUS ION
An intervention combining theoretical and adapted knowledge and experiences of the RCB simulator might promote an individual's informed decisions of future parenthood. This intervention is promising in equipping students with ID for successful adult life, possibly supporting the rights of young people with ID. Future research evaluating the effects of the model is needed.

ACK N OWLED G M ENTS
We would like to express our gratitude to the participating schools and participants. We are grateful to Marja Hodes and ASVZ, Netherlands, for developing and sharing the parenting Toolkit. We also want to thank the Uppsala-Örebro Regional Research Council, Dalarna University and the Erik and Carola Tengströms fund for the grants to make this research possible. The funding sources had no role in study design, the collection, analysis and interpretation of data, the writing of the report or the decision to submit the paper for publication.