Preferences and Experiences of Parents/Guardians of Adolescents and Young Adults with Epilepsy and Intellectual Disability Regarding Decision-Making Surrounding Contraception

TL;DR

This study explores how parents of teenagers and young adults with epilepsy and intellectual disability make decisions about contraception, focusing on their concerns and preferences.

Contribution

The study provides new insights into contraceptive decision-making preferences of parents of adolescents with epilepsy and intellectual disability.

Findings

Parents prioritize managing menstruation over preventing pregnancy when considering contraception.

Many parents fear potential side effects of contraception, perceiving risks as outweighing benefits.

Ease of administration is a key factor, with pill form being preferred over longer-acting methods.

Abstract

To explore the preferences of parents/guardians of adolescents and
young adults (AYAs) of childbearing potential with co-occurring epilepsy and
intellectual disability (ID) regarding decision-making on contraception

We conducted semi-structured interviews with parents/guardians of
female AYAs (12–28 years old) with co-occurring epilepsy and ID
recruited from a tertiary-care children’s hospital. We confirmed the
diagnoses of epilepsy and ID with the patient’s neurologist and
parent/guardian. All degrees of ID (eg, mild/moderate/severe) were eligible.
We audio-recorded and transcribed interviews. Two coders performed
qualitative thematic analysis.

Twenty-five parents/guardians completed the interviews. Themes
included the following: (1) Parents’/caregivers’ desire for
birth control for their child was more centered around menstruation-related
concerns rather than pregnancy prevention; (2) many parents were afraid of
potential adverse effects of contraception for their children, including
perceptions that risks might outweigh benefits; (3) a common important
factor in contraceptive decision-making was ease of administration, and,
generally, the pill form was preferred; (4) longer-acting methods, if
chosen, were largely selected due to trusting recommendations from health
care providers yet were often feared due to perceptions of lower ease of
reversibility if problems arise, as well as greater challenges in delivery
or placement.

Findings may inform interventions to improve contraceptive care for
AYAs with epilepsy and ID, including development of discussion guides and
decision aids for parents/caregivers.

Full text

Introduction

Epilepsy and intellectual disability (ID) are diagnoses that co-occur at a rate of approximately 25%, with the rate of epilepsy rising with increasing severity of ID.^1,2^ Adolescents and young adults (AYAs) with epilepsy have specific considerations regarding starting contraception, including drug interactions between antiseizure medications and contraceptives. An added layer of complexity occurs when parents/guardians are the decision-makers for AYAs with epilepsy and ID due to the AYAs potentially not having the capacity to make independent medical decisions. In all young patients, there is a need for education on emerging sexuality, and parents of young persons with ID may experience additional challenges with supporting menstrual care and have concerns regarding the risk of sexual abuse, the risk of sexually transmitted infections, and the optimization of managing fertility.^4–14^ The American College of Obstetricians and Gynecologists recommends ideally starting contraception-related conversations early in adolescence and routinely revisiting the topic on the basis of changing contexts. The American College of Obstetricians and Gynecologists encourages collaboration with the patient’s neurologist given overlapping topics of importance, such as drug-drug interactions, teratogenicity, and catamenial seizures.^3,14^ To best center contraceptive counseling in patient and family values, clinicians must further understand parent/guardian perspectives about initiating contraception and selecting a method. There is little information in the literature about the perspectives of parents/guardians in making contraceptive decisions, especially for those with co-occurring epilepsy and ID.^3–14^

This study used a qualitative methodology to explore parent and guardian preferences for and experiences with decision-making surrounding initiation of contraception and selection of a method for AYAs with co-occurring epilepsy and ID. The findings can inform providers on how to improve sexual and reproductive health (SRH) care and facilitate patient- and guardian-oriented discussions about contraception for AYAs with co-occurring ID and epilepsy.

Methods

We used a qualitative methodology to explore parental/guardian preferences and experiences regarding decision-making surrounding contraception for their AYAs with co-occurring epilepsy and ID.

We recruited parents/guardians of AYAs with co-occurring epilepsy and ID. Patients were diagnosed with epilepsy before the age of 18 and could have any degree of ID (mild/moderate/severe). We confirmed the diagnoses of epilepsy and ID with the patient’s parent/guardian and primary neurologist. We recruited participants during clinic visits with their child’s pediatric neurologists in a large academic medical center in Western Pennsylvania. We interviewed patients to understand experiences around SRH, puberty, and contraception. We excluded parents/guardians with insufficient English language proficiency to complete a telephone interview. We recruited and interviewed specifically the parent/guardian who accompanied their child to their child’s medical appointment. Participants received a $25 gift card as compensation.

We read the parent/guardian an informed consent script and obtained verbal informed consent before the interview. We obtained consent/assent from the AYA if they were cognitively able to participate in the consent/assent process; we asked them if they would consent/assent to their parent/guardian discussing their medical information in the interview. Interviews lasted between 20 and 60 minutes. We audio-recorded and transcribed interviews verbatim with identifiable information redacted. We used a semi-structured interview guide that was in line with standard qualitative interviewing techniques.^15^ The interviewer presented questions to the participant, then, after allowing the participant to respond, proceeded with prompts/probes to elicit further information and clarification from the participant until no further information was forthcoming. We developed the guide on the basis of previous qualitative research with pediatric neurology providers and females with epilepsy.^5,8,10^ One female pediatric neurologist (LK) performed the interviews. At the time of the interviews, she was a female pediatric neurologist and epilepsy fellow with training in qualitative methodology.

We used Braun and Clarke’s thematic analysis methodology to code transcripts and identify themes.^15^ The principal investigator (LK) created a preliminary codebook based on the interview guide, then 2 independent coders (GV, LK) reviewed and coded all transcripts. GV, at the time of coding, was a female pediatric neurology resident with training in qualitative methodology. The coders used the preliminary codebook deductively and inductively added further codes as needed. The coders convened periodically throughout the study to discuss and reconcile their coding, resolve discrepancies, and establish new codes using the consensus coding approach. They then used the final codebook to analyze the transcripts, evaluate themes, and select representative quotations. The University of Pittsburgh Institutional Review Board approved this study.

Results

Twenty-five parents/guardians participated in the interviews. Their children’s ages ranged from 12 to 28 years old (median age 18 years), and the parent/guardian age ranged from 32 to 74 years old (median age 50 years). Table 1 describes participant demographic and epilepsy characteristics. Multiple themes emerged related parents/guardians making decisions surrounding contraception for their child. Table 2 lists quotations related to the themes.

Theme 1. Parents’/caregivers’ desire for contraception

for their child was more centered around menstruation-related concerns rather than pregnancy prevention.

Overall, parents/guardians wanted to initiate contraception to help with menstrual concerns rather than as a method for pregnancy prevention. They were focused on addressing issues such as hygiene, mood changes, excessive bleeding, pain, and catamenial seizures. One parent mentioned, “She did have a major increase in seizures [with her menses]. She did have pain, so we ended up putting her on Depo-Provera” when discussing their reasoning behind starting contraception. Parents perceived these issues related to menstruation as affecting their child’s quality of life. One parent said, “It is horrible to watch her being [in] such pain and miserable for four days, you know, even prior to it [her period], she was kind of moody and not feeling well.” Parents also brought up that it was hard for their AYAs to communicate what premenstrual syndrome symptoms they were experiencing, which would often lead to them guessing and trying to manage discomfort with as-needed medications to the best of their abilities.

One parent said, “It was to prevent her from having to deal with the things that come along with the period, because we didn’t know, what was going on and what she couldn’t [tolerate]. So it was supposed to be just to avoid periods altogether, just for her daily…activities.”

Parents believed that sexual activity and pregnancy were not in their child’s future, so they were less concerned about pregnancy prevention. A parent was asked about whether they imagined their AYA becoming pregnant, and they responded, “She does not got the cognitive function to be even mindful of that [sexual activity]. So at this point, that kind of information just doesn’t seem particularly relevant.”

When responses were stratified by age of the parent/guardian, those who were between 40 and 50 years old were more interested in contraception secondary to menstruation-related concerns rather than pregnancy-related concerns when compared with parents of other age groups. The other age groups were either ambivalent or did not have clear opinions on the matter.

Theme 2. Many parents were afraid of potential adverse effects of

contraception for their children, including perceptions that risks might outweigh benefits.

Parents/guardians who were interested in starting contraception for their AYAs began to discuss the pros and cons with various providers, including their child’s neurologist, adolescent medicine specialist, obstetrician-gynecologist, or primary care provider. Parents expressed hesitation based on potential adverse effects of contraception. Parents were particularly concerned about effects of contraception on bone density, especially given that some antiseizure medications can also cause decreased bone mineral density and some of their children had limited mobility. One parent said, “Because, of course, you already have some instability, muscle control and things like that. I didn’t know if that would affect that even more. I was told that she could take some calcium pills, but it still concerns me, right?” A few parents mentioned weight gain as one of their concerns about starting contraception. These parents identified as the primary caregiver for their child, carrying them to the bathroom and into and out of bed. They worry that weight gain beyond a safe and manageable amount could compromise their ability to care for their child. One parent said, “But I don’t want her to be obese…. Because I still carry her.”

Another common hesitation that was brought up by parents was the idea of adding more medications for a child who is already medically complex. Parents also worried about how contraception would interact with their current antiseizure medication regimen and were wary that antiseizure medication serum concentrations may need to be checked more often and that the seizure frequency may initially change as medications are optimally adjusted. One parent mentioned, “So the only thing it worries me about that, like trying another medicine… if she’s going to get that reaction [reference to a previous drug interaction with antiseizure medication experienced by her child]. That’s what scares me.”

Some parents expressed that given the risk of these adverse effects, they are willing to forgo contraception and address the symptoms of menstruation and/or catamenial epilepsy in other ways or simply not provide treatment for these symptoms. One parent stated, “You know, [her menses] may increase the seizure activity some for a few days, but nothing that – I think the risks outweigh the benefit for her at this time.”

There were no differences between parents/guardians on the basis of age regarding the adverse effects of contraception. Parents were unanimously concerned about a variety of adverse effects. Weight gain concerns were brought up specifically by parents/guardians in the age groups of 40–50 years old and 50–60 years old.

Theme 3. A common important factor in contraceptive decision-making

was ease of administration, and, generally, pills were preferred.

When discussing the major contributing factors parents/guardians considered when selecting a form of contraception for their child, the ease of administration was a recurring theme. For some parents, the medroxyprogesterone acetate injection was a popular option because of the infrequent and quick nature of administration occurring by injection every 3 months. One parent mentioned, “Yeah, I want to do as little as possible, but still do what we have to do.” Some parents mentioned wearing-off effects and an increase in seizures at Weeks 10–12 following the injection, requiring a change in the frequency of injections or addition of a hormonal pill for symptom management. Seeking an optimal regimen, potentially requiring more visits to the medical provider, initially caused some parental frustration, but once an optimal schedule was reached, parents felt more comfortable. However, some parents/guardians were hesitant about medroxyprogesterone acetate injections because of their child’s fear of needles and causing further medical trauma in children who are already heavily involved in the medical system.

Parents were also concerned about the difficulty of inserting an intrauterine device. one parent described their child undergoing severe anxiety as they headed to the appointment: “[She] went crazy in the elevator to that appointment” and required sedation to arrive in the clinic. Further sedation was required for the actual placement of the intrauterine device.

Overall, the most popular form of contraception in our sample was the oral contraceptive pill. Multiple parents mentioned the ease of administration as the leading reason for this preference. When a parent was asked about the reasoning behind choosing the pill over the medroxyprogesterone acetate injection, they said, “I figured the pill would just be the easiest.” Another parent mentioned that their child has a gastrostomy tube, which they use for medication administration, so the oral contraceptive was an easy addition to their routine: “And that was, you know, one thing that I could just give it easily.” Another parent mentioned the ease of prescription refill as well, saying, “I just go back once a year so they could just give me another year’s worth of pills.” Parents stated that the ease of administration of pills helped reduce the medical burden of their child’s experiences.

Ease of administration of the contraception was a determining factor across all parent/guardian age groups.

Theme 4. Longer-acting methods, if chosen, were largely selected due

to trusting recommendations from health care providers yet were often feared due to perceptions of lower ease of reversibility if problems arise.

Parents expressed concerns about ease of reversibility of the medroxyprogesterone acetate injection. They were afraid that if their child had an adverse reaction to the injection, they would be unable to discontinue the medication easily in comparison with a pill. One parent said, “Our fear was that once she has the shot, obviously, if something would not go right. You know, you can’t reverse that. And then it’s done. You know, you can’t change.” Similarly, parents were worried about identifying problems or adverse effects with the intrauterine device and the difficulty of the process of removing an intrauterine device if needed. As one parent said, “My concern was if there was something wrong down there, she really couldn’t tell me.”

Despite hesitations, some parents/guardians often pursued longer-acting forms of birth control after discussions with their providers. For example, one parent said, “[The doctor] gave me pros and cons of everything and her experience with children with epilepsy. She’s always found that ….the Depo is the one that seems to work the best. I just took her advice because she’s educated, she knows— she’s been there, she’s seen it. And that was important too.” Some parents expressed that they appreciated long-acting methods because of their longevity.

When responses were stratified by age of the parent/guardian, those who were between 40 and 50 years old and 50–60 years old brought up starting a long-acting reversible contraceptive for their child secondary to the trusted advice of their provider.

Discussion

In our qualitative study of parents/guardians of AYAs with co-occurring epilepsy and ID, we observed complexity surrounding decision-making about contraception. Participants identified multiple concerns about contraceptives, including reversibility, ease of administration, adverse effects, interactions with antiseizure medications, and frequency of required medical visits. They identified goals and benefits of contraception, including management of menstrual symptoms and catamenial seizures. Understanding parent/guardian goals of treatment, preferences, and concerns surrounding contraception is imperative for promoting shared decision-making about contraception between clinicians and families, as well as empowering parents/guardians to make high-quality decisions about contraception for their child (in situations when the child is not the primary decision-maker due to lacking independent decision-making capacity).

There is limited research on how parent and guardians make decisions about contraception for people with ID who lack independent medical decision-making capacity. Previous literature has suggested that parents and guardians have a generally more cautious attitude toward contraception, mainly in the context of assessing and discussing the readiness of their child for sexual relationships, along with concern about sexual abuse.^2,16–17^ However, in our study, parents/guardians conceived of contraception as more for management of menstrual symptoms and catamenial seizures than related to pregnancy prevention. In addition, our study delved deeper into the nuances of selecting specific types of birth control once the decision for initiation of contraception has occurred compared with previous literature. More research is needed on how to optimally support patients and families in decision-making about menstrual management options. Existing studies that broadly discuss menstrual management of adolescents with developmental disabilities mention that parents/guardians sought premenarcheal anticipatory guidance. Common perimenstrual concerns among parents/guardians included menstruation hygiene and exacerbation of preexisting conditions.^18–19^

Females with epilepsy without ID also have concerns about initiating contraception, according to previous literature. Participants in these previous studies consistently identified contraception-drug interactions as a major factor in their decision-making process and noted that it is difficult to make informed decisions about contraception without information about drug interactions.^12,20^ Our study mirrors these findings, as parents/guardians expressed substantial concerns about drug interactions.^3,5,8–10^ However, for females with epilepsy without ID, the teratogenic nature of certain antiseizure medications was a key factor in decision-making surrounding contraception.^20,21^ However, in our study, parents/guardians did not prioritize pregnancy prevention as a reason for starting contraception.

Our findings relate to previous studies that more broadly looked at how people with chronic disease make decisions about contraception. This literature largely pertains to adult women making independent decisions about contraception for pregnancy prevention.^20–23^ Participants in these studies expressed some concerns similar to those of the parents/caregivers in our study about the possibility that contraceptives could lead to worsening of disease symptoms or intolerable adverse effects.^22–25^ Participants in previous studies also expressed concerns about longer-acting methods that they could not easily reverse themselves.^25^ However, the risk-benefit calculation was often different given that most participants in our study were using contraception for menstrual concerns rather than pregnancy prevention, with some parents opting not to use contraception due to perceptions that risks outweigh benefits. Our study also builds on the previous literature by specifying adverse effects of high concern to these parents/caregivers, some of which were epilepsy-specific (ie, increased seizures, drug interactions with antiseizure medications) and some of which were not (ie, bone health, weight gain).^26^ The literature mentions the Nexplanon device being placed in alternative sites, such as the back, to help with medical trauma that can be associated with these procedures.^27^ Counseling about this option, along with more consistently offering intrauterine device insertion with anesthesia, can address parental concerns about increased medicalization for those with chronic disease.

There are several limitations of this study. One limitation is that we included only parents/guardians who could speak English proficiently. Therefore, the findings may not be transferable across different linguistic groups. Similarly, female caregivers were represented more than male ones in the study; the findings may not be generalizable to male caregivers. Another limitation is that this study did not address the newest option of subcutaneous depot medroxyprogesterone acetate. This newer option of contraception improves ease of use and gives a more convenient option to administer at home. Furthermore, qualitative research by nature aims to explore a topic in depth and elicit themes and therefore does not produce quantitative data.^28^ Future directions include conducting interviews with verbal people with epilepsy and mild-moderate ID and interviewing parents and patients with epilepsy without ID about their experiences surrounding contraception decision-making. Our research group is actively conducting the project involving verbal people with epilepsy and mild-moderate ID.

The findings of our study, in combination with the present literature, can help map out important discussion points and create clinical guidelines for providers to navigate SRH discussions and improve the quality of contraceptive counseling and care provided to individuals with ID and epilepsy. Counseling tips are outlined in Table 3 and can be used in combination with the present material.^14,29–40^

Conclusion

In conclusion, our findings suggest that parents/guardians of AYAs with epilepsy and ID consider multiple factors when making decisions surrounding conraception. Clinicians can use the study findings to provide parents with information about contraceptive options and engage with parents’ goals, questions, and concerns regarding contraception. The study findings may inform interventions to improve contraceptive care for AYAs with epilepsy and ID, including development of discussion guides and decision aids for parents/caregivers.