Abstract
Prior research has demonstrated that PWEs view intimate interpersonal relationships as personally important and as a substantive challenge in their lives. This is significant as high-quality intimate relationships have been linked with greater well-being and better healthcare self-management in other disease contexts. For persons with epilepsy (PWEs), self-management is critical for seizure control, lower mortality, and better quality of life. In the current study, we conducted the first known investigation into the quality of PWEs’ intimate relationships and their self-management abilities. In a sample of 88 PWEs, using the Adult Epilepsy Self-Management Instrument, results demonstrate links between greater relationship satisfaction and sexual satisfaction with better self-management on seven of the eleven subscales: health communication, coping skills, social support, seizure tracking, seizure response, stress management, and wellness; satisfaction was unrelated to the treatment, safety, medical adherence, and proactivity subscales. Importantly, these results held while controlling for age, gender, social support, and presence of comorbidities. These findings provide some evidence of the importance of intimate relationships in understanding PWEs’ healthcare management abilities. Given that intimate relationship dynamics have been shown to be highly amenable to intervention, this is an area of potential interest for improving self-management in PWEs.
Keywords: Epilepsy management, Intimate relationships, Interpersonal relationships, Sexual satisfaction, Relationship satisfaction, Health promotion
1. Introduction
Epilepsy is a neurological condition affecting approximately 1.1% of adults—around 3.4 million people in the United States and 50 million people worldwide [1,2]. The U.S. National Academy of Sciences’ Institute of Medicine (3) has noted that the most critical aspect of successful epilepsy management and care is self-management, generally defined as a combination of the personal actions taken to control one’s seizures and active participation in one’s own medical care [4,5]. In the context of epilepsy, self-management includes the patient’s ability to manage their symptoms, treatment, physical and psychosocial consequences, and lifestyle modifications needed to control their epilepsy. Consistent and effective epilepsy self-management has been linked with better seizure control, higher quality of life, and more effective healthcare resource utilization [3]. Further, self-management among persons with epilepsy (PWEs) is a critical factor in controlling seizures, the frequency of which is the number one risk factor for Sudden Unexpected Death in Epilepsy (SUDEP) [6,7]. It is crucial to identify and better understand factors that help or hinder PWE’s ability to engage in effective self-management.
Sizable barriers to epilepsy self-management have been documented. PWEs navigate many structural barriers, including average lower income and education levels, lower quality health insurance, more instances of disability, and lower ratings of one’s own physical health (e.g., [5,8]). A sizable literature has also shown that PWEs are at high risk of a range of negative psychosocial outcomes including poorer psychological well-being (e.g., [9]), worsened quality of life (e.g., [10,11]), greater likelihood of experiencing symptoms of depression (e.g., [12]), feelings of stigmatization and/or of oneself as a burden on others (e.g., [13,14]), and less satisfaction with their lives (e.g., [15]).
In addition to the aforementioned struggles, PWEs also report hardships with social connection, which is a critical factor in well-being and quality of life [16,17]. Multiple studies have demonstrated poorer psychosocial functioning in PWEs. For instance, across three large Finnish population-based surveys of children 4 to 16 years of age, 98% of children in the healthy control condition were found to have appropriate social skills needed for managing daily activities, compared to 20–33% of children with epilepsy. Children with epilepsy also had fewer friends than healthy controls, and between 21%-31% of children with epilepsy experienced marked or moderate difficulties making friends [18]. This pattern is also found in adults with epilepsy. In a nationally representative study of over 5400 American adults, PWEs were between two and three times more likely than people without epilepsy to express dissatisfaction and frustration with their family life, friendships, and social life [8]. Relatedly, PWEs are significantly more likely to report rarely or never receiving the emotional support they need when compared to people without epilepsy, and are more likely to report dissatisfaction with their lives in general [19]. PWEs experience more loneliness, have trouble maintaining relationships, are consistently found to be less likely to ever marry, and report poorer social outcomes across the lifespan, including at 35-year follow-ups (e.g., [15,20]). With these findings amassed, it is clear that PWEs are often leading lives in which their social and interpersonal needs are unmet.
Social relationships, and intimate relationships in particular (such as committed romantic relationships characterized by emotional bonding and support), have been shown to significantly impact mental and physical well-being both in healthy samples and in those with disease or illness (e.g., [21]). The positive effects of romantic relationships on health and longevity have been repeatedly documented, with satisfying and high-quality relationships promoting fewer instances of mental illness, faster recovery from physical illness and injury, better adherence to medical advice and treatment, and lower risk of mortality years and even decades after critical health events [22–27]. The influence of intimate relationships on health and health outcomes also extends to the self-management of chronic diseases [28]. For instance, in a study of hypertension, researchers found that higher levels of ‘marital adjustment’ (e.g., cohesion, satisfaction, and affectional expression) were associated with less obesity, better adherence to medications, and decreased cessation of prescribed medications [29]. Similarly, in a recent study, researchers examined 52 romantic couples to determine whether facets of intimate relationship quality influenced self-management of type 2 diabetes [30]. These researchers assessed partner support, partner investment, and relationship satisfaction as markers of relationship quality. Their results suggested that higher quality relationships were associated with better self-efficacy for diabetes management in the patient, which was subsequently associated with testing their blood glucose levels more often, exercising, and adhering to a healthy diet [30].
While high-quality intimate relationships are associated with positive health outcomes, negative aspects of intimate relationships that contribute to low relationship quality are often detrimental to self-management of chronic disease. For instance, in a study of 7547 coupled adults who had one or more chronic health problems, researchers found significant correlations between conflict with a romantic partner, psychological distress, and poorer self-management of their disease(s) [31]. Additionally, a study of disease self-management in people with type 2 diabetes demonstrated a link between relationship issues, communication about their disease, and effective self-management [32]. Specifically, participants who reported concerns about the state of their relationship and whether it would be long-lasting, and/or who reported that their partner often became an obstacle to their health goals (e.g., impeding a low sugar diet), also felt that talking about their type 2 diabetes with their partner would likely lead to a negative outcome for their relationship. Many feared that their partner would wish to leave the relationship due to the burden, and/or anticipated feeling shame around their condition. Participants who felt that communicating about their health with their partner posed a threat of some sort were significantly less effective at adhering to prescribed treatment and medication [32]. These findings highlight the importance of examining indicators of relationship quality in people with chronic disease who are in need of effective and consistent self-management, as in the context of PWEs.
Although the beneficial impacts of romantic relationships have been observed in the context of a number of conditions and disorders, this line of research has not been applied to the study of epilepsy. However, it is clear that such an application is needed, based on the documented struggles of PWEs. In a recent study on thousands of message board posts generated by patients with epilepsy and their caretakers, researchers found that PWEs view romantic and sexual relationships as a specific point of struggle in their lives [33]. Epilepsy-based judgments from (potential) partners, inability to maintain relationships, and sexual issues were some of the most common concerns. These message board posts from PWEs and PWE caretakers demonstrate an information gap and unmet need around maintaining satisfying and successful romantic and sexual relationships while living with epilepsy. In the current cross-sectional study, we examined whether PWEs’ romantic and sexual satisfaction predicted more effective self-management of their epilepsy.
Relationship satisfaction and sexual satisfaction are distinct, but related constructs that are robustly correlated across intimate relationship contexts and outcomes (i.e., [34–36]). Definitions of sexual satisfaction are similar to relationship satisfaction in that both include a combination of affective and evaluation aspects. Satisfaction with either is determined by weighing the positives and negatives in the (sexual) relationship against a person’s expectations, and by a person’s subjective feelings of contentment in the (sexual) relationship [35,37]. As with relationship satisfaction, sexual satisfaction is uniquely associated with greater well-being, including fewer reports of depression and higher reported quality of life [38–41]. Given the importance of both forms of satisfaction on well-being, and PWEs identifying both romantic and sexual issues as points of concern [33], both relationship and sexual satisfaction should be considered in promoting positive health behavior in this population.
In the current study, we assess relationship satisfaction and sexual satisfaction as indicators of intimate relationship quality. Additionally, we included two covariates in our models. Previous work has shown that comorbidities provide an additional burden on relationship satisfaction [42] and on health more generally [43,44]. In fact, data from 41,658 participants demonstrated a 43% higher chance of self-reporting poor health with each added comorbidity [43]. Thus, we include the presence of comorbidities (dichotomous yes/no) as a controlled variable in our models. Other programs of research have identified the beneficial effects of social support within intimate relationships. Social support includes tangible and emotional resources that help the recipient cope with stress [45]. Social support from romantic partners has been linked to better physical and psychological well-being in the context of stressful life circumstances [46–49]. Thus, to ensure that we are reporting findings specific to relationship satisfaction and sexual satisfaction, rather than the effects of received social support, we include an assessment of partner social support in our models as a covariate.
2. Methods
2.1. Participants
Participants (N = 88) were recruited for a self-directed online survey via advertisements that were shared by the Epilepsy Foundation of Indiana (EFI) social media accounts and further shared by other accounts. EFI was not involved in the survey but agreed to disseminate the advertisement. Participants were eligible for the study if they had a medical diagnosis of epilepsy, were prescribed medication to control their seizures, could speak and read English, had reliable Internet access, were at least 18 years of age, and were in a committed romantic relationship at the time of the study. All study procedures were approved by the institutional review board at Indiana University. Informed consent was waived in favor of a study information sheet to prevent the collection of any identifying information.
The sample was made up of 57 men, 30 women, and one gender-unspecified participant, with an age range from 20 to 53 years (M = 32.09, SD = 7.20). Most (83%) identified as White/Caucasian; 7% as Hispanic or Latino; 6% as Black or African-American; 3% as Native American, American Indian, or Alaskan Native; and 2% as Asian. Average household income was between $60,000 and $74,999 USD per year, with most (77%) reporting that their income was enough to make ends meet and 23% reporting that it was barely enough or not enough. Half (53%) of the sample held a college degree, 24% had some college experience but no degree, 16% held a high school diploma or GED, and 7% did not hold a high school diploma. Regarding insurance coverage, 33% had Medicaid, 39% had Medicare, and 28% had private insurance. Last, according to the Liverpool Seizure Severity Scale (described below), participants on average reported moderate perceptions of control over their seizures (M = 17.40, SD = 2.25) and reported mild-to-moderately severe seizures in the last six weeks (M = 30.41, SD = 6.54).
2.2. Measures
Participants first completed a demographic questionnaire assessing age, gender, education level, race and ethnicity, insurance coverage, household income, and whether they felt their income was “enough to make ends meet” (not enough, barely enough, enough, more than enough).
2.2.1. Epilepsy Self-Management
Epilepsy self-management refers to the behaviors in which PWEs engage to manage the symptoms, treatments, physical and psychosocial consequences, and lifestyle modifications accompanying epilepsy. We used the 65-item Adult Epilepsy Self-Management Instrument [50] to assess self-management behaviors across 11 domains: Healthcare Communication, Treatment, Coping, Social Support, Seizure Tracking, Wellness, Seizure Response, Safety, Medication Adherence, Stress Management, and Proactivity. In accordance with the scale scoring instruction, responses were summed to create subscale variables.
2.2.2. Relationship satisfaction and sexual satisfaction
We used the Global Measure of Relationship Satisfaction (GMREL) [35] to assess overall relationship satisfaction. The GMREL has participants rate their relationship satisfaction on five 7-point dimensions: good–bad, pleasant–unpleasant, positive–negative, satisfying–unsatisfying, valuable–worthless. Ratings are averaged, with higher scores indicating greater satisfaction. Additionally, we used the Global Measure of Sexual Satisfaction (GMSEX) [35] to assess sexual satisfaction. The rating scale was identical to the GMREL, except that participants were instructed to answer regarding their sexual relationship with their partner rather than their overall relationship.
2.2.3. Comorbidities
We asked, “Have you ever been told by a doctor or other healthcare professional that you have any of the following conditions? Check all that apply.” The conditions were: depression, anxiety, attention deficit hyperactivity disorder, attention deficit disorder, insomnia, migraines, or ‘other’. If they selected ‘other’, they were asked to specify their condition in an open textbox. We recoded this variable into a binary measure of the presence or absence of any comorbidities.
2.2.4. Social support
We used the 10-item Sources of Social Support Scale (SSSS) [51] to assess social support from one’s partner, modified to be specific to support around epilepsy (e.g., “how much does your partner give you advice or information about your epilepsy?” and “how often does your partner withdraw from discussions about your epilepsy or try to change the topic away from your epilepsy?”). Responses were made on a scale from 1 (not at all) to 5 (a lot). Scores were created by averaging the 10 items.
2.2.5. Seizure severity
We used the Liverpool Seizure Severity Scale to measure participants’ self-reported seizure severity [52]. This instrument consists of two subscales: percept of control (8 items) and ictal/postictal severity (12 items). We eliminated one of the items from the percept of control subscale “When you have had seizures, how often have they occurred together in clusters, with quite long periods between each cluster?” because there are both high severity (seizure clusters) and low severity (long periods of time between clusters) concepts within the same item. Items were scored on a four- or five-point Likert response scale. Summed scores for the precept of control subscale range from 7 to 28 and the ictal/postictal severity subscale ranges from 12 to 50 with higher scores indicating greater seizure severity. Items were reversed scored as appropriate.
2.3. Analyses
Zero-order correlations and descriptive statistics for each variable included in the analyses are presented in Table 1. We conducted linear multiple regression analyses to determine whether relationship and sexual satisfaction were significantly associated with epilepsy self-management. In each regression model, we included either romantic or sexual satisfaction as predictor variables, as well as age (mean-centered), gender (coded as 0 = women, 1 = men), the presence of any comorbidities (coded as 0 = no comorbidities, 1 = any comorbidities), and social support (mean-centered) as covariates.
Table 1.
Inter-item correlations and descriptive statistics for all variables included in the regression models.
| 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | |
|---|---|---|---|---|---|---|---|---|---|
| 1. Age | – | ||||||||
| 2. Gender | −0.12 | – | |||||||
| 3. Comorbidities | −0.30* | 0.22 | – | ||||||
| 4. Social support | 0.21 | −0.29* | −0.42* | – | |||||
| 5. Relationship satisfaction | 0.07 | −0.23 | −0.46* | 0.71* | – | ||||
| 6. Sexual satisfaction | −0.01 | −0.19 | −0.40* | 0.55* | 0.84* | – | |||
| Self-Management subscales | |||||||||
| 7. Health Communication | 0.16 | 0.15 | 0.15 | 0.19 | 0.26 | 0.30* | – | ||
| 8. Treatment | −0.05 | −0.02 | 0.002 | 0.34* | 0.37* | 0.12 | 0.07 | – | |
| 9. Coping | −0.03 | 0.21 | 0.16 | 0.15 | 0.28* | 0.31* | 0.34* | 0.18 | – |
| 10. Social Support | 0.07 | 0.08 | 0.07 | 0.31* | 0.36* | 0.38* | 0.49* | 0.16 | 0.47* |
| 11. Seizure Tracking | −0.08 | 0.21 | 0.13 | 0.27 | 0.38* | 0.30* | 0.54* | 0.19 | 0.29* |
| 12. Wellness | −0.30* | 0.01 | −0.08 | 0.20 | 0.47* | 0.51* | 0.40* | 0.06 | 0.27* |
| 13. Seizure Response | −0.19 | 0.06 | 0.08 | 0.18 | 0.44* | 0.55* | 0.48* | 0.08 | 0.36* |
| 14. Safety | 0.04 | 0.18 | 0.09 | −0.05 | −0.07 | 0.14 | 0.25 | −0.11 | 0.11 |
| 15. Medical Adherence | 0.07 | 0.04 | −0.02 | 0.25 | 0.30* | 0.22 | 0.44* | 0.26 | 0.42* |
| 16. Stress Management | −0.18 | 0.22 | 0.09 | −0.05 | 0.26 | 0.37* | 0.50* | −0.12 | 0.30* |
| 17. Proactivity | 0.08 | 0.23 | 0.30* | 0.04 | 0.07 | 0.04 | 0.62* | 0.17 | 0.31* |
| Descriptive Statistics | |||||||||
| M | 32.05 | –a | –b | 3.39 | 5.14 | 4.96 | 49.81 | 35.30 | 34.51 |
| SD | 7.17 | – | – | 0.61 | 1.19 | 1.21 | 8.24 | 6.51 | 5.26 |
| 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | ||
| 10. Social Support | – | ||||||||
| 11. Seizure Tracking | .42* | – | |||||||
| 12. Wellness | .49* | .52* | – | ||||||
| 13. Seizure Response | .40* | .39* | .50* | – | |||||
| 14. Safety | .12 | .07 | .18 | .24 | – | ||||
| 15. Medical Adherence | .42* | .39* | .35* | .29* | .08 | – | |||
| 16. Stress Management | .37* | .44* | .54* | .59* | .23 | .34* | – | ||
| 17. Proactivity | .50* | .55* | .30* | .39* | .22 | .52* | .50* | – | |
| Descriptive Statistics | |||||||||
| M | 25.09 | 10.84 | 10.79 | 10.94 | 13.17 | 14.54 | 10.36 | 10.69 | |
| SD | 3.71 | 2.39 | 1.93 | 1.99 | 1.82 | 2.43 | 2.20 | 2.35 | |
Gender was coded as 0 = women, 1 = men.
The presence of comorbidities was coded as 0 = no comorbidities, 1 = any comorbidities.
p < .001.
Note that we analyzed separate models for relationship satisfaction and sexual satisfaction to avoid multicollinearity, as these variables were highly intercorrelated (r = 0.84), as has been reported in prior studies (e.g., [53,54]) We did initially conduct our analyses with both entered simultaneously, however, the associated variance inflation factors neared 5.0 (a standard according to some sources (VIF = 4.71) [55–57]. Thus, we examined each in individual models to avoid inflated effects. Additionally, because we conducted a large number of tests, we used a Bonferroni correction to find an acceptable alpha level. Because of this, we only consider effects to be significant if p ≤ 0.001. All regression coefficients for relationship satisfaction are presented in Table 2, and for sexual satisfaction in Table 3.
Table 2.
Regression coefficients for relationship satisfaction predicting self-management.
| Self-management subscales | |||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| Health communication | Coping | Social support | Seizure Tracking | Wellness | Seizure Response | Stress Management | Treatment | Safety | Medical Adherence | Proactivity | |
| Predictor variables | |||||||||||
| Age | |||||||||||
| b | 0.36 | 0.04 | 0.13 | −0.02 | −0.06 | −0.04 | −0.04 | −0.001 | 0.03 | 0.02 | 0.06 |
| t | 3.33† | 0.56 | 2.51 | −0.48 | −2.26 | −1.34 | −1.22 | −0.01 | 1.17 | 0.52 | 1.69 |
| rp | 0.35 | 0.06 | 0.27 | −0.05 | −0.24 | −0.15 | −0.14 | −0.001 | 0.13 | 0.06 | 0.18 |
| Gender | |||||||||||
| b | 2.36 | 1.28 | 0.77 | 1.18 | 0.29 | 0.16 | 0.70 | 0.44 | 0.46 | 0.11 | 0.61 |
| t | 1.39 | 1.12 | 0.99 | 2.36 | 0.71 | 0.38 | 1.46 | 0.29 | 1.01 | 0.20 | 1.18 |
| rp | 0.15 | 0.12 | 0.11 | 0.25 | 0.08 | 0.04 | 0.16 | 0.03 | 0.11 | 0.02 | 0.13 |
| Comorbidities | |||||||||||
| b | 10.62 | 6.15 | 4.04 | 2.12 | 0.22 | 1.51 | 1.09 | 2.69 | 0.91 | 1.48 | 3.23 |
| t | 4.75* | 4.06* | 3.90* | 3.21 | 0.41 | 2.74 | 1.73 | 1.34 | 1.53 | 1.96 | 4.76* |
| rp | 0.47 | 0.41 | 0.40 | 0.34 | 0.05 | 0.29 | 0.19 | 0.15 | 0.17 | 0.21 | 0.47 |
| Social support | |||||||||||
| b | 0.77 | 0.25 | 0.67 | 0.47 | −0.58 | −0.50 | −1.08 | 2.12 | 0.12 | 0.53 | 0.21 |
| t | 0.43 | 0.21 | 0.82 | 0.90 | −1.36 | −1.15 | −2.15 | 1.33 | 0.25 | 0.89 | 0.39 |
| rp | 0.05 | 0.02 | 0.09 | 0.10 | −0.15 | −0.13 | −0.23 | 0.15 | 0.03 | 0.10 | 0.04 |
| Relationship satisfaction | |||||||||||
| b | 3.15 | 2.13 | 1.58 | 1.06 | 1.09 | 1.17 | 1.05 | 1.78 | 0.02 | 0.60 | 0.57 |
| t | 3.39† | 3.38† | 3.67* | 3.87* | 4.87* | 5.09* | 4.02* | 2.13 | 0.07 | 1.90 | 2.02 |
| rp | 0.35 | 0.35 | 0.38 | 0.40 | 0.48 | 0.49 | 0.41 | 0.23 | 0.01 | 0.21 | 0.22 |
Note. Degrees of freedom (df) for each model = 81. b = unstandardized regression coefficient; t = t-statistic coefficient; rp = partial correlation, interpreted as rp ≥ 0.20 = small effect size, rp ≥ 0.50 = medium/moderate effect size, and rp ≥ 0.80 = large effect size.
p < .001,
p = .001.
Table 3.
Regression coefficients for sexual satisfaction predicting self-management.
| Self-management subscales | |||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| Health commun. | Coping | Social Support | Seizure Tracking | Wellness | Seizure Response | Stress Management | Treatment | Safety | Medical Adherence | Proactivity | |
| Predictor variables | |||||||||||
| Age | |||||||||||
| b | 0.39 | 0.05 | 0.14 | −0.02 | −0.06 | −0.03 | −0.03 | −0.06 | 0.05 | 0.02 | 0.05 |
| t | 3.70* | 0.73 | 2.77 | −0.58 | −2.10 | −1.02 | −0.95 | −0.55 | 1.78 | 0.42 | 1.63 |
| rp | 0.38 | 0.08 | 0.29 | −0.06 | −0.23 | −0.11 | −0.11 | −0.06 | 0.19 | 0.05 | 0.18 |
| Gender | |||||||||||
| b | 2.33 | 1.25 | 0.75 | 1.15 | 0.27 | 0.15 | 0.69 | 0.35 | 0.47 | 0.10 | 0.60 |
| t | 1.42 | 1.11 | 0.98 | 2.21 | 0.67 | 0.38 | 1.51 | 0.23 | 1.09 | 0.17 | 1.15 |
| rp | 0.16 | 0.12 | 0.11 | 0.24 | 0.07 | 0.04 | 0.17 | 0.03 | 0.12 | 0.02 | 0.13 |
| Comorbidities | |||||||||||
| b | 10.92 | 6.18 | 4.11 | 1.89 | 0.18 | 1.61 | 1.19 | 1.19 | 1.28 | 1.33 | 3.14 |
| t | 5.07* | 4.14* | 4.08* | 2.75 | 0.34 | 3.16 | 1.98 | 0.58 | 2.25 | 1.74 | 4.60* |
| rp | 0.49 | 0.42 | 0.41 | 0.29 | 0.04 | 0.33 | 0.22 | 0.07 | 0.24 | 0.19 | 0.46 |
| Social support | |||||||||||
| b | 1.68 | 1.09 | 1.24 | 1.20 | −0.08 | −0.15 | −0.77 | 4.80 | −0.35 | 0.98 | 0.57 |
| t | 1.13 | 1.06 | 1.78 | 2.54 | −0.22 | −0.44 | −1.86 | 3.40† | −0.90 | 1.86 | 1.20 |
| rp | 0.13 | 0.12 | 0.19 | 0.27 | −0.02 | −0.05 | −0.20 | 0.35 | −0.10 | 0.20 | 0.13 |
| Sexual satisfaction | |||||||||||
| b | 3.16 | 1.90 | 1.48 | 0.62 | 0.90 | 1.16 | 1.05 | −0.51 | 0.52 | 0.31 | 0.37 |
| t | 4.26* | 3.69* | 4.25* | 2.60 | 4.84* | 6.59* | 5.08* | −0.72 | 2.65 | 1.19 | 1.57 |
| rp | 0.43 | 0.38 | 0.43 | 0.28 | 0.47 | 0.59 | 0.49 | −0.08 | 0.28 | 0.13 | 0.17 |
Note. Degrees of freedom (df) for each model = 81. b = unstandardized regression coefficient; t = t-statistic coefficient; rp = partial correlation, interpreted as rp ≥ 0.20 = small effect size, rp ≥ 0.50 = medium/moderate effect size, and rp ≥ 0.80 = large effect size.
p < .001,
p = .001.
3. Results
3.1. Epilepsy Self-Management and relationship satisfaction
Relationship satisfaction was significantly associated with seven of the eleven self-management subscales. Regression models including relationship satisfaction, along with the control variables, explained between 23% and 34% of the variance in the following self-efficacy subscale measurements: Health Communication, Coping, Social Support, Seizure Tracking, Seizure Response, Wellness, and Stress Management. PWEs reporting more satisfaction with their current relationship also reported better outcomes on these subscales, with moderate/medium effect sizes ranging from rp = .35 to rp = .49. Relationship satisfaction was not associated with scores on the Treatment, Safety, Medical Adherence, or Proactivity subscales.
3.2. Epilepsy Self-Management and sexual satisfaction
Sexual satisfaction showed the same pattern of results as did relationship satisfaction, with significant associations on the same seven of eleven subscales, albeit with some stronger associations. Regression models including sexual satisfaction, along with the control variables, explained between 28% and 42% of the variance in these subscales. Effect sizes ranged from small to moderate/medium, rp = .28 to rp = .59.
4. Discussion
In this study, we examined the association between essential facets of intimate relationship quality—specifically relationship satisfaction and sexual satisfaction—with self-management among persons with epilepsy (PWEs). Intimate relationship quality has been consistently linked with better mental and physical health outcomes, including better adherence to medical treatments and lower risk of mortality [24,25]. Because PWEs are known to experience difficulties with social relationships [8,18], and recent work has shown that PWEs are especially concerned with issues related to their romantic and sexual relationships [33], the current study provides a foundation for investigating PWEs’ intimate relationships as critical influences on their epilepsy-related health outcomes.
We explored one health outcome in particular among PWEs: self-management. The concept of self-management has been shown to be paramount in controlling one’s seizures and subsequently reducing severe health ramifications, including SUDEP [6]. Controlling for participant age and gender, the presence of comorbidities, and perceptions of social support received from one’s partner, our results showed that satisfaction predicted better self-management on seven of the eleven measured subscales (64% of outcomes measured), and did so with moderate or moderate-to-large effect sizes. Specifically, PWEs who reported more satisfaction with their romantic and sexual lives also reported better health communication, coping skills, social support, seizure tracking, seizure response, stress management, and wellness. The relationship satisfaction and sexual satisfaction measures were highly intercorrelated and had the same pattern of significant associations with each self-management subscale, suggesting that only one measure of satisfaction would suffice for clinical implementation. Satisfaction of either type was found to be unrelated to the treatment, safety, medical adherence, and proactivity subscales. Although our findings were not uniform across all subscales, these results demonstrate the importance of intimate relationship dynamics in PWEs’ ability to effectively manage their condition. As has been shown in other conditions, such as cancer, intimate relationship satisfaction is amenable to intervention [58,59]. This is one potential area of intervention to enhance self-management and related outcomes in PWEs.
Notably, in many of our models, relationship satisfaction and sexual satisfaction impacted self-management as strongly as— and occasionally even more so than—did the presence of comorbidities (i.e., similarly sized statistical effects). Previous literature has shown that the presence of comorbidities complicates self-management and has an effect on persons’ abilities to function optimally [60,61] within the context of a chronic illness such as epilepsy. That intimate relationship characteristics, which are amenable to intervention, can have just as much as or more of an effect on self-management than the presence of comorbidities is a promising finding. This result offers more evidence for the possibility of interventions that target intimate relationship characteristics in PWEs to enhance self-management.
Although this was the first known study to examine intimate relationship factors on self-management in PWE, there are some methodological limitations. First, the sample consisted of 88 PWEs, a sample too small to confidently generalize our findings to the larger population of PWEs. Second, we relied on self-report measures of self-management rather than behavioral measures of medical adherence or seizure frequency. Future researchers should work to garner a more representative sample, and combine the use of objective measures and self-reports of self-management. Third, while relationship and sexual satisfaction are important features of overall intimate relationship quality and function, future work could expand to include a wider variety of intimate relationship factors in PWEs lives. Further, there are a number of individual difference factors that affect relationship dynamics and sexuality, such as attachment style [62] and religiosity [63]. An expanded study would give a clearer understanding of how to best tailor interventions based on personal and relationship characteristics. Fourth, our sample consisted of mostly highly educated (53% with college degrees) males, and were recruited via an advertisement shared by an organization located in Indiana. Thus, findings may have somewhat limited generalizability to PWE without these characteristics. Follow-up studies should include more women, PWEs with lower education and socioeconomic status, and from different regional or cultural backgrounds. Finally, though we did collect data regarding participants’ diagnoses of anxiety and depression, we did not measure current levels of anxiety and/or depressive symptoms. Because these symptoms could be affected by recent seizure activity, and these symptoms could potentially affect perceived intimate relationship characteristics, this is a potential limitation in this study.
5. Conclusions
We investigated the link between intimate relationship satisfaction and epilepsy self-management in PWEs. Our results demonstrated significant associations between both romantic relationship and sexual satisfaction with two-thirds of the epilepsy self-management measures tested. Given that intimate relationship dynamics have been shown to be highly amenable to intervention in the context of other diseases like cancer, this is an area of potential interest for improving self-management in PWEs.
Footnotes
References
- [1].Tian N, Boring M, Kobau R, Zack MM, Croft JB. Active epilepsy and seizure control in adults — United States, 2013 and 2015. https://www.cdc.gov/mmwr/volumes/67/wr/mm6715a1.htm; 2018. [accessed 12 Nov 2020]. [DOI] [PMC free article] [PubMed]
- [2].Wasal N Impact of epilepsy on marriages in people with epilepsy: an ethnographic evaluation. Curr J Appl Sci Technol. 2019;35:1–7. 10.9734/cjast/2019/v37i530341. [DOI] [Google Scholar]
- [3].England MJ, Liverman CT, Schultz AM, Strawbridge LM. Epilepsy across the spectrum: Promoting health and understanding. A summary of the Institute of Medicine Report. Epilepsy Behav 2012;25:266–76. 10.1016/j.yebeh.2012.06.016. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [4].Di Iorio C Epilepsy self-management. In: Gochman DS, editor. Handbook of health behavior research II: Provider determinants, Boston, MA: Springer US; 1997. p. 213–30. Available from: 10.1007/978-1-4899-1760-7_11. [DOI] [Google Scholar]
- [5].Pandey DK, Levy J, Serafini A, Habibi M, Song W, Shafer PO, et al. Self-management skills and behaviors, self-efficacy, and quality of life in people with epilepsy from underserved populations. Epilepsy Behav 2019;98:258–65. 10.1016/j.yebeh.2019.07.042. [DOI] [PubMed] [Google Scholar]
- [6].DeGiorgio CM, Markovic D, Mazumder R, Moseley BD. Ranking the leading risk factors for sudden unexpected death in epilepsy. Front Neurol 2017;8:473. 10.3389/fneur.2017.00473. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [7].Pack AM. SUDEP: What are the risk factors? Do seizures or antiepileptic drugs contribute to an increased risk? Epilepsy Curr 2012;12:131–2. 10.569/1535-7511-12.4.131. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [8].Kobau R, Luncheon C, Zack MM, Shegog R, Price PH. Satisfaction with life domains in people with epilepsy. Epilepsy Behav 2012;25:546–51. 10.1016/j.yebeh.2012.09.013. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [9].Kanner AM. Depression in epilepsy: a complex relation with unexpected consequences. Curr Opin Neurol 2008;21:190–4. 10.1097/wco.0b013e3282f4e978. [DOI] [PubMed] [Google Scholar]
- [10].Sillanpää M, Haataja L, Shinnar S. Perceived impact of childhood-onset epilepsy on quality of life as an adult. Epilepsia 2004;45:971–7. 10.1111/j.0013-9580.2004.44203.x. [DOI] [PubMed] [Google Scholar]
- [11].Suurmeijer TP, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological functioning, and quality of life in epilepsy. Epilepsia 2001;42:1160–8. 10.1046/j.1528-1157.2001.37000.x. [DOI] [PubMed] [Google Scholar]
- [12].Tellez-Zenteno JF, Patten SB, Jetté N, Williams J, Wiebe S. Psychiatric comorbidity in epilepsy: A population-based analysis. Epilepsia 2007;48:2336–44. 10.1111/j.1528-1167.2007.01222.x. [DOI] [PubMed] [Google Scholar]
- [13].Espínola-Nadurille M, Crail-Melendez D, Sánchez-Guzmán MA. Stigma experience of people with epilepsy in Mexico and views of health care providers. Epilepsy Behav 2014;32:162–9. 10.1016/j.yebeh.2013.12.007. [DOI] [PubMed] [Google Scholar]
- [14].Shackleton DP, Kasteleijn-Nolst Trenité DGA, de Craen AJM, Vandenbroucke JP, Westendorp RGJ. Living with epilepsy: long-term prognosis and psychosocial outcomes. Neurology 2003;61:64–70. 10.1212/01.wnl.0000073543.63457.0a. [DOI] [PubMed] [Google Scholar]
- [15].Jalava M, Sillanpää M, Camfield C, Camfield P. Social adjustment and competence 35 years after onset of childhood epilepsy: a prospective controlled study. Epilepsia 1997;38:708–15. 10.1111/j.1528-1157.1997.tb01241.x. [DOI] [PubMed] [Google Scholar]
- [16].Baumeister RF, Leary MR. The need to belong: Desire for interpersonal attachments as a fundamental human motivation. Psychol Bull 1995;117:497–529. 10.1037/0033-2909.117.3.497. [DOI] [PubMed] [Google Scholar]
- [17].Cacioppo JT, Patrick W. Loneliness: Human nature and the need for social connection. New York: W. W. Norton & Company, Inc; 2009. [Google Scholar]
- [18].Sillanpää M, Helen CJ. The psychosocial impact of epilepsy in childhood. Epilepsy Behav 2009;15(Suppl. 1):S5–S10. 10.1016/j.yebeh.2009.03.007. [DOI] [PubMed] [Google Scholar]
- [19].Centers for Disease Control and Prevention. Epilepsy, https://www.cdc.gov/chronicdisease/resources/publications/factsheets/epilepsy.htm; 2020. [accessed 20 Dec 2020].
- [20].Geerlings RPJ, Gottmer-Welschen LMC, Machielse JEM, de Louw AJA, Aldenkamp AP. Failed transition to independence in young adults with epilepsy: The role of loneliness. Seizure 2019;69:207–12. 10.1016/j.seizure.2018.07.003. [DOI] [PubMed] [Google Scholar]
- [21].Smith TW. Relationships matter: Progress and challenges in research on the health effects of intimate relationships. Psychosom Med 2019;81:2–6. 10.1097/psy.0000000000000660. [DOI] [PubMed] [Google Scholar]
- [22].DiMatteo MR. Social support and patient adherence to medical treatment: a meta-analysis. Health Psychol 2004;23:207–18. 10.1037/0278-6133.23.2.207. [DOI] [PubMed] [Google Scholar]
- [23].Gouin J-P, Carter CS, Pournajafi-Nazarloo H, Glaser R, Malarkey WB, Loving TJ, et al. Marital behavior, oxytocin, vasopressin, and wound healing. Psychoneuroendocrinology 2010;35:1082–90. 10.1016/j.psyneuen.2010.01.009. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [24].Magrin ME, D’Addario M, Greco A, Miglioretti M, Sarini M, Scrignaro M, et al. Social support and adherence to treatment in hypertensive patients: a meta-analysis. Ann Behav Med 2015;49:307–18. 10.1007/s12160-014-9663-2. [DOI] [PubMed] [Google Scholar]
- [25].Uchino BN, Cacioppo JT, Kiecolt-Glaser JK. The relationship between social support and physiological processes: a review with emphasis on underlying mechanisms and implications for health. Psychol Bull 1996;119:488–531. 10.1037/0033-2909.119.3.488. [DOI] [PubMed] [Google Scholar]
- [26].Rohrbaugh MJ, Shoham V, Coyne JC. Effect of marital quality on eight-year survival of patients with heart failure. Am J Cardiol 2006;98:1069–72. 10.1016/j.amjcard.2006.05.034. [DOI] [PubMed] [Google Scholar]
- [27].Holt-Lunstad J, Smith TB, Layton JB. Social relationships and mortality risk: a meta-analytic review. PLoS Med 2010;7:. 10.1371/journal.pmed.1000316e1000316. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [28].Martire LM, Helgeson VS. Close relationships and the management of chronic illness: associations and interventions. Am Psychol 2017;72:601–12. 10.1037/amp0000066. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [29].Trevino DB, Young EH, Groff J, Jono RT. The association between marital adjustment and compliance with antihypertension regimens. J Am Board Fam Pract 1990;3:17–25. [PubMed] [Google Scholar]
- [30].Wooldridge JS, Ranby KW. Influence of relationship partners on self-efficacy for self-management behaviors among adults with type 2 diabetes. Diabetes Spectr 2019;32:6–15. 10.2337/ds17-0069. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [31].Soubhi H, Fortin M, Hudon C. Perceived conflict in the couple and chronic illness management: preliminary analyses from the Quebec Health Survey. BMC Fam Pract 2006;7:59. 10.1186/1471-2296-7-59. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [32].Leustek J, Theiss JA. Features of illness versus features of romantic relationships as predictors of cognitive and behavioral coping among individuals with type 2 diabetes. Health Commun 2018;33:1549–59. 10.1080/10410236.2017.1384346. [DOI] [PubMed] [Google Scholar]
- [33].Miller WR, Gesselman AN, Garcia JR, Groves D, Buelow JM. Epilepsy-related romantic and sexual relationship problems and concerns: indications from Internet message boards. Epilepsy Behav 2017;74:149–53. 10.1016/j.yebeh.2017.06.023. [DOI] [PubMed] [Google Scholar]
- [34].Fallis EE, Rehman US, Woody EZ, Purdon C. The longitudinal association of relationship satisfaction and sexual satisfaction in long-term relationships. J Fam Psychol 2016;30:822–31. 10.1037/fam0000205. [DOI] [PubMed] [Google Scholar]
- [35].Lawrance K-A, Byers ES. Sexual satisfaction in long-term heterosexual relationships: the interpersonal exchange model of sexual satisfaction. Pers Relatsh 1995;2(4):267–85. 10.1111/j.1475-6811.1995.tb00092.x. [DOI] [Google Scholar]
- [36].Sprecher S Sexual satisfaction in premarital relationships: associations with satisfaction, love, commitment, and stability. J Sex Res 2002;39:190–6. 10.1080/00224490209552141. [DOI] [PubMed] [Google Scholar]
- [37].Lawrance K, Byers ES. Development of the interpersonal exchange model of sexual satisfaction in long term relationships. Can J Hum Sex 1992;1:123–8. [Google Scholar]
- [38].AARP. Sexuality at midlife and beyond: 2004 update of attitudes and behaviors, http://www.aarp.org/research/topics/life/info-2014/2004_sexuality.html; 2005[accessed 20 Dec 2020].
- [39].Taleporos G, McCabe MP. The impact of sexual esteem, body esteem, and sexual satisfaction on psychological well-being in people with physical disability. Sex Disabil 2002;20:177–83. 10.1023/A:1021493615456. [DOI] [Google Scholar]
- [40].Laumann EO, Paik A, Rosen RC. Sexual dysfunction in the United States: Prevalence and predictors. JAMA 1999;281:537–44. 10.1001/jama.281.6.537. [DOI] [PubMed] [Google Scholar]
- [41].Rosen RC, Bachmann GA. Sexual well-being, happiness, and satisfaction, in women: The case for a new conceptual paradigm. J Sex Marital Ther 2008;34:291–7. 10.1080/00926230802096234. [DOI] [PubMed] [Google Scholar]
- [42].Thormann A, Sørensen PS, Koch-Henriksen N, Thygesen LC, Laursen B, Magyari M. Chronic comorbidity in multiple sclerosis is associated with lower incomes and dissolved intimate relationships. Eur J Neurol 2017;24:825–34. 10.1111/ene.13297. [DOI] [PubMed] [Google Scholar]
- [43].Putcha N, Puhan MA, Hansel NN, Drummond MB, Boyd CM. Impact of comorbidities on self-rated health in self-reported COPD: an analysis of NHANES 2001–2008. COPD 2013;10:324–32. 10.3109/15412555.2012.744963. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [44].Koskela J, Kilpeläinen M, Kupiainen H, Mazur W, Sintonen H, Boezen M, et al. Co-morbidities are the key nominators of the health-related quality of life in mild and moderate COPD. BMC Pulm Med 2014;14:102. 10.1186/1471-2466-14-102. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [45].Cohen S Social relationships and health. Am Psychol 2004;59:676–84. 10.1037/0003-066x.59.8.676. [DOI] [PubMed] [Google Scholar]
- [46].Conger RD, Rueter MA, Elder GH. Couple resilience to economic pressure. J Pers Soc Psychol 1999;76:54–71. 10.1037//0022-3514.76.1.54. [DOI] [PubMed] [Google Scholar]
- [47].Dehle C A new look at social support behavior during marital interactions: Are ratings of social support quality associated with marital quality and spouses’ perceptions of social support? In: Columbus A, Columbus A, editors. Advances in psychology research, Vol 42. Hauppauge, NY: Nova Science Publishers; 2007. p. 147–73. [Google Scholar]
- [48].Pasch LA, Bradbury TN. Social support, conflict, and the development of marital dysfunction. J Consult Clin Psychol 1998;66:219–30. 10.1037//0022-006x.66.2.219. [DOI] [PubMed] [Google Scholar]
- [49].Saitzyk AR, Floyd FJ, Kroll AB. Sequential analysis of autonomy-interdependence and affiliation-disaffiliation in couples’ social support interactions. Pers Relatsh 1997;4:341–60. 10.1111/j.1475-6811.1997.tb00150.x. [DOI] [Google Scholar]
- [50].Escoffery C, Bamps Y, LaFran5ce WC, Stoll S, Shegog R, Buelow J, et al. Factor analyses of an Adult Epilepsy Self-Management Measurement Instrument (AESMMI). Epilepsy Behav 2015;50:184–9. 10.1016/j.yebeh.2015.07.026. [DOI] [PubMed] [Google Scholar]
- [51].Kinsinger SW, Laurenceau J-P, Carver CS, Antoni MH. Perceived partner support and psychosexual adjustment to breast cancer. Psychol Health 2011;26:1571–88. 10.1080/08870446.2010.533771. [DOI] [PubMed] [Google Scholar]
- [52].Baker GA, Smith DF, Jacoby A, Hayes JA, Chadwick DW. Liverpool Seizure Severity Scale revisited. Seizure 1998;7:201–5. 10.1016/S1059-1311(98)80036-8. [DOI] [PubMed] [Google Scholar]
- [53].Roels R, Janssen E. Sexual and relationship satisfaction in young, heterosexual couples: the role of sexual frequency and sexual communication. J Sex Med 2020;17:1643–52. 10.1016/j.jsxm.2020.06.013. [DOI] [PubMed] [Google Scholar]
- [54].Vowels LM, Mark KP. Relationship and sexual satisfaction: a longitudinal actor-partner interdependence model approach. Sex Relatsh Ther 2020;35:46–59. 10.1080/14681994.2018.1441991. [DOI] [Google Scholar]
- [55].Marcoulides KM, Raykov T. Evaluation of variance inflation factors in regression models using latent variable modeling methods. Educ Psychol Meas 2019;79:874–82. 10.1177/0013164418817803. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [56].Chatteriee Samprit, Simonoff Jeffrey S.. Handbook of regression analysis. Hoboken, New Jersey: Wiley; 2013. [Google Scholar]
- [57].O’Brien RM. A caution regarding rules of thumb for variance inflation factors. Qual Quant 2007;41:673–90. 10.1007/s11135-006-9018-6. [DOI] [Google Scholar]
- [58].Porter LS, Keefe FJ, Baucom DH, Hurwitz H, Moser B, Patterson E, et al. Partner-assisted emotional disclosure for patients with gastrointestinal cancer. Cancer 2009;115(S18):4326–38. 10.1002/cncr.24578. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [59].Kalaitzi C, Papadopoulos VP, Michas K, Vlasis K, Skandalakis P, Filippou D. Combined brief psychosexual intervention after mastectomy: Effects on sexuality, body image, and psychological well-being. J Surg Oncol 2007;96:235–40. 10.1002/jso.20811. [DOI] [PubMed] [Google Scholar]
- [60].Liddy C, Blazkho V, Mill K. Challenges of self-management when living with multiple chronic conditions. Can Fam Physician 2014;60:1123–33. [PMC free article] [PubMed] [Google Scholar]
- [61].Contant É, Loignon C, Bouhali T, Almirall J, Fortin M. A multidisciplinary self-management intervention among patients with multimorbidity and the impact of socioeconomic factors on results. BMC Fam Pract 2019;20:53. 10.1186/s12875-019-0943-6. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [62].Hazan C, Shaver PR. Romantic love conceptualized as an attachment process. J Pers Soc Psychol 1987;52(3):511–24. [DOI] [PubMed] [Google Scholar]
- [63].Emmers-Sommer TM, Allen M, Schoenbauer KV, Burrell N. Implications of sex guilt: A meta-analysis. Marriage Fam Rev 54(5):417–37. doi: 10.1080/01494929.2017.1359815. [DOI] [Google Scholar]
- [64].Smithson WH, Colwell B, Hanna J. Sudden unexpected death in epilepsy: Addressing the challenges. Curr Neurol Neurosci Rep 2014;14:502. 10.1007/s11910-014-0502-4. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [65].Maguire MJ,Jackson CF, Marson AG, Nevitt SJ. Treatments for the prevention of Sudden Unexpected Death in Epilepsy (SUDEP). Cochrane Database Syst Rev 2016;7:CD011792. 10.1002/14651858.cd011792.pub2. [DOI] [PMC free article] [PubMed] [Google Scholar]
