Being a parent can be demanding and stressful, especially for people with chronic diseases such as multiple sclerosis (MS). Parenting can be disrupted by flareups, disease worsening, and other MS symptoms, including mobility problems, pain, fatigue, and cognitive impairment. Mood disorders, such as depression and anxiety, have been found to occur at much higher rates in people with MS than in the general population. Surprisingly, less is known about which factors may predict mood disorders in parents with MS. This study aims to identify potential demographic, clinical, and self-reported predictors that contribute to mood disorders measured by the Hospital Anxiety and Depression Scale.
A total of 285 parents with MS completed an anonymous online questionnaire combining sociodemographic, clinical, and family characteristics and scales, validated in Italian, related to coping strategies and social support. Associations between each variable and mood disorders were assessed using univariate and multivariate logistic regression analyses.
Disability level, emotional and dysfunctional coping strategies, and perceived social support were significant predictors of mood disorders in parents with MS.
These findings confirm the importance of identifying risk factors for mood disorders in parents with MS so that early intervention can minimize mood disruptions caused by the disease.
Parenting is a complex process that can be influenced by a combination of factors both internal and external to the individual. Being a parent can be demanding and stressful, and its success can be influenced by chronic diseases such as multiple sclerosis (MS).1 People with MS face a variety of challenges related to living with this disabling disease, which impacts physical and social functioning, including daily activities, roles, and relationships. Thus, the parent-child relationship can be disrupted by flare-ups, disease worsening, and other characteristic MS symptoms, particularly mobility problems, pain, fatigue, cognitive impairment, and mood disorders (MDs).2 The physical and emotional symptoms of MS have been found to specifically affect parents’ participation in their children’s lives, but parental emotions and mood have a greater impact than the physical limitations caused by MS.3 Indeed, MDs have been found to highly impact the lives of people with MS.4–6 Depression and anxiety occur at much higher rates in people with MS than in the general population.7,8 Depression occurs in approximately 30%9 of people with MS, and anxiety has been reported to be present in up to 22.1% of people with MS.4,9 Furthermore, anxiety can overlap with somatic (eg, muscle tension) and nonsomatic (eg, concentrating difficulty) manifestations of the disease, increasing the possibility that MDs and their causes go underrecognized and, consequently, untreated, impacting other clinical outcomes as well.4
Parents with MS often report an idealized representation of what they have to do to be “good” parents, and although they want to be able to live up to their ideals, many felt that MS limited them, resulting in feelings of distress and guilt.3 Indeed, mothers with MS had regretted or felt guilty about their inability to fully participate in their children’s physical activities or even to transport them to those activities, especially when hampered by fatigue or mood changes.2 Parents with other major diseases, such as cancer, also frequently report this feeling of inadequacy. Parents with advanced cancer report higher levels of depression and anxiety than patients without dependent children,10 and they struggle with concerns about the impact of an incurable illness on their children and the challenges of being a “good parent”11 while ill.
Interest in understanding factors that may promote psychosocial adjustment and protect against negative outcomes in parental MS is growing. Among these protections, coping strategies can play a pivotal role in reducing psychological pressure and managing stressful situations. The chronic and unpredictable nature of MS suggests that people need to find ways to cope with change and challenges in a continual process of regulation. Coping skills have proved to be crucially important for adjusting to the adaptive demands of chronic diseases, and in the past few years they have received growing interest in MS. For example, evidence indicates that people with MS with higher disability levels have higher depression scores and exhibit avoidance, emotion-centered, and less adaptive coping strategies.12 In a recent study by Goretti et al,13 people with MS routinely adopted avoidance strategies and relied less on task-oriented and positive attitude strategies compared with the general population.
Social support has also been identified as a factor that consistently predicts how well a patient adjusts to living with MS. Increased social support is associated with better mental health outcomes, including reduced MDs and higher quality of life, and also serves as a buffer against the adverse effects of stress.14 A recent qualitative study suggested that the parent with MS’s partner may play an important role in moderating the impact of parenting with MS by providing practical help with housework and emotional support.3 Practical and emotional support from others and the perception that others are available to provide support is a significant indicator of parenting satisfaction.3
Although much research and many resources now focus on children or adolescents with MS15–17 as well as the possible effect of a parent’s MS on children’s and family members’ moods,18–20 surprisingly less is known about which factors may predict MDs in parents with MS. For these reasons, the aim of this study was to investigate potential variables that contribute to the experience of MDs in a sample of parents with MS.
Individuals were eligible to participate in the study if they had a diagnosis of MS and were parents of at least 1 child younger than 18 years. Individuals provided their consent to participate after reading information about the study and clicking on the option “proceed with the questionnaire,” in accordance with the revised Declaration of Helsinki.21 Participants completed an anonymous SurveyMonkey questionnaire related to coping strategies and social support composed of questions about sociodemographics (ie, sex, age, years of education, current employment), family characteristics (ie, living with/without a partner, the number and age ranges of children), and clinical characteristics (ie, disease duration, disease course, whether a diagnosis of MS was received after the birth of a child). Questions about psychological variables and self-reported scores on an Expanded Disability Status Scale22 derived from the original Expanded Disability Status Scale23 and the Patient-Determined Disease Steps scale24 (both validated in Italian) were also collected. The study received ethical approval from the Regional Ethics Committee, Liguria, Italy.
MDs were evaluated using the Hospital Anxiety and Depression Scale (HADS),25 which consists of 2 separately scored subscales measuring anxiety (HADS-A) and depression (HADS-D). The usefulness of the HADS has been validated as a marker of major depression and generalized anxiety disorder in the MS population. Items are rated on a 4-point Likert scale, with higher scores indicating greater anxiety and depression. A score of 7 or less is normal, 8 to 10 is borderline abnormal, and 11 or higher is abnormal. A score of 8 or higher reflects the presence of anxiety or depression.
Individual coping strategies in difficult or stressful situations were tested using the Brief Coping Orientation to Problems Experienced (Brief COPE)26 self-questionnaire. The Brief COPE measures 14 theoretically identified coping responses classified into 3 categories: problem-focused coping (ie, active coping, instrumental support, planning), emotion-focused coping (acceptance, emotional support, humor, positive reframing, religion), and dysfunctional coping (behavioral disengagement, denial, self-distraction, self-blame, substance use, venting). As a short, 28-item self-report questionnaire (with 2 items for each of the measured coping responses),27 the Brief COPE provides a way to rapidly measure coping responses. Because the scores for the different coping strategies comprise varying numbers of items, and thus are not comparable, a standardized total score is calculated by dividing the total score by the number of items for each of the 3 categories.
Perceived social support was assessed using the Multidimensional Scale of Perceived Social Support (MSPSS).28 This scale is designed to measure perceived social support from 3 sources: family, friends, and a significant other. Participants indicate their level of agreement or disagreement to 12 items on a scale from 1 (very strongly disagree) to 7 (very strongly agree). A higher score represents higher perceived support.
The sample size was considered appropriate to detect an association between mood and potential predictors in parents with MS. Post hoc power analysis—considered at least 5% of the variance in the dependent variable (MDs measured by the HADS) at a 5% significance level and with a sample size of 285 individuals—produced a power of 86%. Sample characteristics are described with means, SDs, ranges, and frequencies.
The HADS score was considered the primary outcome. The cutoff score of 8 for both anxiety and depression was used in a univariate logistic regression model to assess sociodemographic, clinical, and family characteristics; coping strategies; and social support. Variables with a P < .20 were considered for the multivariate model. Separate multiple regression models were fitted for mild symptoms of anxiety and depression. The predictors were simultaneously entered into the model. The results are presented as odds ratios (ORs) and 95% CIs. The multiple regression model was checked for multicollinearity. A variable was eliminated if the variance inflation factor was greater than or equal to 10 or the tolerance limit was less than 0.1. Analyses were performed using Stata Version 15 (StataCorp).
A total of 416 parents with MS were recruited through the social media channels of the Italian Multiple Sclerosis Society. Twenty-four parents with MS did not meet the inclusion criteria, and 107 were excluded because they did not complete the questionnaire. The final sample consisted of 285 parents with MS. The sociodemographic, clinical, and family characteristics; coping strategies; and social support of the 285 parents with MS are reported in TABLE 1.
The univariate logistic regression analyses found that parents with a HADS-A score of 8 or higher (59.0%; n = 168) were more often women (OR, 2.19; P = .012), reported the use of dysfunctional coping strategies (OR, 4.25; P < .001), and had a lower level of perceived social support (OR, 0.62; P < .001) (TABLE S1, which is published in the online version of this article at IJMSC.org). Parents with a HADS-D score of 8 or higher (30.5%; n = 87) had higher levels of disability (OR, 1.34; P < .001); had a primary progressive MS course (OR, 2.61; P = .019); were not taking disease-modifying drugs (OR, 0.41; P = .005); reported the use of problem-focused (OR, 0.70; P = .001), emotion-focused (OR, 0.56; P < .001), and dysfunctional (OR, 2.22; P < .001) coping strategies; and had a lower level of perceived social support (OR, 0.53; P < .001) (TABLE S2). After the multivariate analyses, anxiety symptoms were correlated with disability level (OR, 1.18; P = .033), dysfunctional coping strategies (OR, 4.07; P < .001), and a lower level of perceived social support (OR, 0.69; P = .014) (Table S1). Depression was associated with disability level (OR, = 1.38; P < .001), emotion-focused (OR, 0.67; P = .031) and dysfunctional (OR, 2.34; P < .001) coping strategies, and a lower level of perceived social support (OR, 0.73; P = .040) (Table S2).
As a chronic, disabling disease that frequently occurs in young adults in the most productive period of their lives, MS can contribute to psychosocial problems. These can be exacerbated when people with MS face the stress and demands of parenting.1 The psychosocial impact of MS is modulated by several factors that interact in a complex manner, such as MDs.4–6 However, although many studies shed light on mood alteration in children or adolescents with MS15–17 or on the possible effect of a parent’s MS on children’s and family members’ moods,18–20,29 less is known about which factors may predict MDs in parents with MS. The objective of this study was to identify factors that influence MDs in parents with MS, including sociodemographic, clinical, and family characteristics; coping strategies; and social support. First, this study confirmed that parents with MS have higher occurrences of anxiety and depression (59.0% and 30.5%, respectively) than the prevalence reported in the MS literature.4,8 Furthermore, for the first time, to our knowledge, these findings highlight that disability level, coping strategies (emotional and dysfunctional), and perceived social support significantly predict MDs in parents with MS.
The relationship between disability level and MDs is not clearly understood and deserves further attention. For example, although some previous studies show that individuals with more severe disability report higher levels of anxiety,5,30 others do not find any significant correlation.4,31 The present results suggest that parents with MS experiencing mobility limitations have difficulty assisting their children in recreational activities and transportation,2 and this, in turn, can have a negative impact on mood. Furthermore, people living with a chronic disability use more emotional and avoidance coping strategies, including social support seeking, emotion venting, and mental/behavioral disengagement.32
Although problem-focused coping strategies were more often reported in the present sample, the results align with previous evidence that indicates a frequent use of emotion-focused coping in people with MS in general.32 Because people with MS are not able to change the chronic and disabling nature of the disease, it is not surprising that they more frequently use emotional coping skills. Emotion-based coping strategies (eg, acceptance, emotional support, humor, positive reframing, religion) were observed in individuals with higher levels of depression, confirming a tendency to resort to passive behavior.33,34 As reported by Somer et al,34 people with MS use emotion-focused coping to regulate anxiety, depression, anger, and grief, emotions tied to the stressful conditions associated with having a chronic disease. Interestingly, although less reported compared with problem- and emotion-focused strategies, multivariate analyses reveal that dysfunctional coping strategies have a significant impact on MDs in parents with MS, especially when relevant concomitant physical disability exists.13 Studies show that people with MS more frequently use detachment and avoidance coping strategies, such as mental/behavioral disengagement and denial, than the general population.32 This use of less adaptive coping strategies, such as behavioral disengagement, denial, self-distraction, self-blame, substance use, and venting, may put those living with MS at greater risk for depression or anxiety.
The chronic and progressive nature of MS suggests that people with MS are engaged in a continual process of adjustment to changes and challenges. Evidence indicates the link between poor psychologic adjustment to MS and ineffective coping.32 Although no coping strategy is, per se, maladaptive, some strategies are more effective than others in counterbalancing mental distress. Results suggest that denial and restraint coping may be useful for parents with MS experiencing distress because they help reduce emotional pain. On the other hand, avoidance may have a negative impact on adaptation, particularly in the face of life challenges that require direct engagement,34 and thus, may negatively affect mood.
Social support is an important factor related to mood in parents with MS. In line with previous evidence,14,35 lower social support was associated with higher depression and anxiety symptoms. Parenting is a complex social role that often places parents’ health care needs behind those of their child. To accomplish parenting tasks and roles, parents with MS rely heavily on their partners (where present), as well as on extended family, friends, and community resources.36 Appropriate social support, however, may not always be accessible or sufficient for the well-being of parents with disabilities. In this case, other positive personal factors, including environmental mastery, self-acceptance, and purpose, could contribute to daily role participation and parental satisfaction in parents with MS.37
The present study has several limitations. Participants’ characteristics may limit the interpretation of the results. The sample included middle-aged, low-disability parents with MS with at least 1 child younger than 18 years. Evidence indicates that when people with MS experience a lower level of physical disability, symptoms may be ambiguous, with a variety of manifestations, leading people to question the source of the symptoms and their possible evolution, thus affecting work and social roles. Furthermore, 74.7% of people in the present study had relapsing-remitting MS. The number of relapses over time, their unpredictability, and the exacerbation phase could significantly increase anxiety and depression symptoms38 and lead to more uncertainty about the future than in patients with more apparent progression, in the absence of relapses.4,39 Furthermore, collecting data via online questionnaires may create bias because technology access and proficiency may exclude some people from participating.
Although perceived support has been found to be more strongly related to quality of life than received support, further examining the differences between perceived and received support might be useful in developing interventions to increase social support for people with MS. Furthermore, information about socioeconomic status, sleep disturbances, and personality traits that may also contribute to MDs in parents with MS should be taken into account.
The present results strongly support the importance of early identification of MDs in parents with MS. Data are required to make strong, evidenced-based clinical practices, services, and policies that will maximize the capacities of parents with MS and their partners. Given that mood has a significant impact on the quality of life of parents with MS and on other family members (eg, affecting sibling psychological adjustment), it is important that health care providers proactively and directly engage patient concerns regarding their role as parents in the context of managing a potentially disabling illness such as MS.
Future research should continue to examine how psychological factors, such as coping strategies and social support, influence MDs and how they can support the mental health and well-being of parents with MS. This is highly important for planning interventions to minimize the disruption of disease on parents’ moods.
» Disability level, emotional and dysfunctional coping strategies, and perceived social support were significant predictors of mood disorders in parents with multiple sclerosis (MS).
» The results of this study strongly support the importance of the early identification of risk factors for mood disorders in parents with MS.
» When planning interventions to minimize the disruption of disease on parents’ moods, health care providers should consider how clinical factors (eg, disability level) and psychological factors (eg, coping skills, social support) can affect the mental health and well-being of parents with MS.
FINANCIAL DISCLOSURE: Ms Messmer Uccelli is currently employed by Biogen. The other authors have disclosed no relevant financial relationships.
FUNDING/SUPPORT: Funding for this study was provided by the Italian Multiple Sclerosis Foundation (CUP H52I150001900001).
Note: Supplementary material for this article is available at IJMSC.org.