1. Introduction
Multiple sclerosis (MS) is a chronic, immune-mediated, demyelinating disease affecting the central nervous system, causing a wide range of physical, cognitive, and emotional symptoms. Although the disease course can vary significantly, the most common form is relapsing–remitting MS, characterized by episodes of relapse followed by remissions, which in many cases leads to chronic progression [
1]. People with multiple sclerosis (PwMS) often face severe limitations in their daily lives, ranging from motor and sensory difficulties to psychological, sexual, and bladder issues. These limitations not only affect patients but also those around them, especially family caregivers (FCs), who take on a large portion of daily caregiving responsibilities [
2].
The impact of multiple sclerosis on FCs is profound, as they must provide assistance in various areas, including mobility, personal care, domestic tasks, and emotional support [
3]. The progressive dependency of PwMS places a significant burden on FCs, who find that the time and energy they dedicate to caregiving tasks interferes with their physical and mental health, as well as their quality of life. Over time, FCs may experience high levels of stress, burnout, and, in many cases, symptoms of depression, impacting their overall well-being and their ability to cope with the situation [
4,
5,
6].
While much of the research on informal caregivers has focused on women due to their traditionally assigned role in caring for sick individuals, studies on MS reveal an interesting peculiarity, namely that a significant percentage of FCs are men. In Spain, it is estimated that between 37% and 49% of informal caregivers of PwMS are men [
7,
8,
9], a higher proportion than observed in other chronic illnesses. This phenomenon provides a valuable opportunity to explore how the experience of caring for a family member with a chronic illness may differ for men, as traditional gender roles do not typically associate informal care with masculinity [
10].
The fact that nearly half of informal caregivers for PwMS are men raises several key questions. Unlike other chronic conditions where caregiving is more feminized, men who take on this responsibility face not only the physical and emotional demands of caregiving but also the challenges of a society that has historically assigned these tasks to women. This creates a potential conflict between social expectations of masculinity and the demands of the caregiving role, which can lead to a form of “gender dissonance” [
11]. That is, the act of caregiving may conflict with traditional gender norms that view these activities as feminine, potentially increasing the risk of self-stigma in these men.
In this context, self-stigma refers to the internalization of negative stereotypes about the caregiving role, which could impact not only the mental health of male caregivers but also their identity and perception of their own masculinity. The sense that their actions are incongruent with social expectations of masculinity may lead them to perceive their role as a source of shame or inadequacy, affecting their emotional well-being and quality of life. Meanwhile, caregiving demands continue to place a significant burden on them, exacerbating negative effects on their health and social relationships.
This research focuses on analyzing the experience of male caregivers of PwMS, a group that, despite its growing importance, has received little attention in the scientific literature. We hypothesize that these men take on the caregiving role voluntarily, facing the same practical difficulties as women in terms of time management, physical effort, and emotional support but with the added challenge of feeling a conflict between caregiving and their masculine identity due to the cultural perception that associates caregiving with femininity.
The objectives of this study are as follows:
To identify the main caregiving tasks performed by male caregivers and explore their motivations.
To examine the perceived burden of caregiving tasks, its impact on their quality of life, and the relationship between the functional characteristics of PwMS and the caregivers’ burden and quality of life.
To analyze whether caregiving leads to gender dissonance or self-stigma, providing insights for designing interventions that enhance their well-being and support their essential role.
2. Methods
2.1. Participants and Procedure
This was an observational descriptive study in which we analyzed a series of cases. We recruited a purposive sample of 44 male caregivers residing in Andalusia, Spain. The inclusion criteria were as follows: being male, of legal age, a family caregiver for a person with MS, and providing informed consent. The exclusion criteria were not being the primary caregiver or receiving any form of payment for providing care. One of the authors, who has been a caregiver for his wife with MS for over 20 years and is a member of the Board of Directors of the Federation of Multiple Sclerosis Associations of Andalusia, utilized his connections within the associative network to contact associations in the eight provinces of the Andalusian region and invite male caregivers to participate in the study. Participation was voluntary and anonymous. Participants were informed about the research objectives and provided informed consent to complete the questionnaire (average completion time: 30 min). Data collection was conducted through personal interviews (either in person or by phone) without offering financial incentives to participants.
2.2. Instruments
1. Sociodemographic questionnaire: This questionnaire collected sociodemographic information about the caregivers and PwMS, including clinical and functional data for the latter. Additionally, it included two open-ended questions about caregiving motivations and the perceived quality of care compared to that provided by a woman. The first question was “How, why, and what were your motivations to start caring for a family member with multiple sclerosis?” The second was “Do you consider the quality of the care you provide to be inferior to that which would be provided by a woman?”
2. Caregiving Tasks in Multiple Sclerosis Scale (CTiMSS): This scale was used to assess the caregiving tasks performed by caregivers. The Spanish-translated scale includes 24 items, divided into four domains, namely activities of daily living (ADLs), psycho-emotional support, instrumental help, and social–practical support. Caregivers rated the level of help on a 5-point Likert scale, ranging from “Never” (0) to “Always” (4) [
12]. The internal consistency of the scale in this study was excellent, with a Cronbach’s alpha of 0.93.
3. Zarit Caregiver Burden Interview (ZBI): The Spanish version was used to measure perceived burden among caregivers [
13]. This 22-item questionnaire, with responses on a 0–4 Likert scale, evaluates areas such as physical health, psychological well-being, financial situation, and social life of the caregiver [
14]. The Spanish version has demonstrated excellent internal consistency, with a Cronbach’s alpha between 0.83 and 0.94 [
13,
15].
4. WHOQOL-BREF Quality of Life Questionnaire: Developed by the WHO and adapted into Spanish [
16,
17], this questionnaire evaluates quality of life through 26 questions across four domains, including physical health, psychological health, social relationships, and environment. Higher scores indicate better quality of life. The Spanish version has satisfactory psychometric properties, including acceptability, internal consistency, and evidence of convergent and discriminant validity [
18,
19].
5. Gender perception in caregiving tasks: Caregivers rated whether they considered caregiving tasks to be more “masculine” or “feminine” on a 5-point Likert scale, from “Entirely masculine” (1) to “Entirely feminine” (5). This type of scale is easy to understand and has been used successfully in other studies to determine gender identity [
20]. In this study, the internal consistency of the scale was good, with a Cronbach’s alpha of 0.82.
6. Self-Stigma Scale—Short Form (SSS-SF): To measure caregivers’ internalized stigma, this 9-item questionnaire used a 4-point Likert scale without a neutral option. It evaluates three dimensions of self-stigma, namely cognitive, affective, and behavioral dimensions. This scale has been used previously in studies with people who belong to minorities or have mental illnesses [
21]. In this study, the internal consistency of the scale was good, with a Cronbach’s alpha of 0.77. For our analysis, we dichotomized the Likert scale values as follows: 1 and 2 = Yes; 3 and 4 = No.
2.3. Data Analysis
Data analysis was performed using R software (version 4.2.3). Descriptive and univariate analyses were conducted on the sociodemographic and functional variables of the caregivers and PwMS, as well as on the different scales used (CTiMSS, Zarit, WHOQOL-BREF, gender perception, and self-stigma). Missing values were imputed using the mean value of the variable or regression results in the case of the gender perception scale.
An ANOVA was used to analyze the relationship between perceived burden and quality of life, with Bartlett’s test used to verify the homogeneity of variances. A p-value < 0.05 was considered statistically significant, and effect size was evaluated using eta squared (η²).
Additionally, regression analyses were performed to examine the relationship between two indicators of PwMS functionality (type of MS and disability level) and two dependent variables, which were perceived burden (measured with ZBI) and the general quality of life of the caregiver (measured with WHOQOL).
3. Results
3.1. Characteristics of Caregivers and PwMS
Table 1 presents the characteristics of the 44 male caregivers who participated in the study, all residents of Andalusia, Spain. The average age of caregivers was 58.4 years. In terms of educational level, primary and secondary studies predominated (45.4%), with a lower proportion holding university degrees (27.3%). Approximately half of the participants were working, while the rest were retired or unemployed. The majority of caregivers (86.4%) were married or in a domestic partnership, and 80.5% were responsible for caring for their spouse or partner. The average duration of caregiving was 12.9 years. Almost all (95.5%) believe that the care they provide is of the same quality as that provided by a woman.
Regarding PwMS, most were women (87%), with an average age of 51.6 years, primarily (80.5%) wives or partners of the male caregiver. They commonly had relapsing–remitting (56.8%) or secondary progressive MS (38.6%).
In Spain, disability assessment is carried out by the public administration following technical guidelines. A multidisciplinary team, including at least a doctor, psychologist, and social worker, evaluates the individual’s physical, mental, and sensory conditions. Social factors, such as family environment and employment, educational, and cultural situations, are also considered. Disability is graded in percentages and categorized into three levels of <33%, 33–65%, and >65%. Dependency recognition, which is required to access public assistance, is governed by Law 39/2006 on the Promotion of Personal Autonomy and Care for Dependent Persons. This process involves a complex administrative procedure, which can be challenging to navigate. It is important to note that having a recognized degree of disability does not automatically entitle an individual to receive dependency-related benefits in the same proportion.
In this study, nearly three out of four people with PwSMS had reduced mobility, and 95.5% had recognized disabilities. However, only 45.5% qualified as dependent and were entitled to assistance.
3.2. Caregiving Tasks Performed by Caregivers
Table 2 shows the frequency of participation of FCs in various caregiving tasks, evaluated on a 5-point Likert scale where 0 indicates “Never” and 4 indicates “Always”. Caregivers provided higher levels of support in tasks related to instrumental and social–practical caregiving. The tasks in which they provided the most help included grocery shopping (
M = 3.0; SD = 1.2), transportation (
M = 2.9;
SD = 1.4), housework (
M = 2.8;
SD = 1.3), emotional support (
M = 2.7;
SD = 1.0), meal preparation (
M = 2.6;
SD = 1.4), companionship (
M = 2.5;
SD = 1.3), and physical exercise (
M = 2.3;
SD = 1.3). These tasks entail a high level of physical and organizational responsibility on the part of the caregivers, reflecting a strong commitment to daily management and the well-being of the dependent individual.
On the other hand, tasks where less support is provided are primarily concentrated in ADL care. Among the activities receiving the least help are feeding (M = 0.7; SD = 1.1), managing incontinence (M = 0.9; SD = 1.5), administering medications (M = 1.2; SD = 1.5), dealing with memory loss (M = 1.2; SD = 1.1), keeping the patient occupied (M = 1.3; SD = 1.2), and assisting with toilet use (M = 1.4; SD = 1.5). These results suggest that caregivers are less involved in activities that may relate to the patient’s desire for greater autonomy or the use of devices or external resources that facilitate care.
From these results, it appears that male caregivers provide significant help in tasks traditionally considered “feminine”, such as meal preparation, housework, shopping, and providing emotional support. This behavior challenges conventional gender stereotypes, showing that male caregivers take on active roles in tasks historically associated with women.
Conversely, the tasks in which they offer less help are primarily basic care tasks, such as feeding and managing incontinence. This pattern may reflect a lower willingness or need to engage in more intimate or routine activities that are traditionally perceived as part of female caregiving.
Overall, the fact that male caregivers provide substantial assistance with activities like cooking and shopping suggests greater flexibility in role-taking within caregiving. Male caregivers assume responsibilities in both instrumental and emotional areas, which is crucial for the well-being of dependent individuals, who are mostly women.
3.3. Motivations and Care Evaluation
Caregivers’ responses to the question of how and why they decided to start caring for a family member with multiple sclerosis underscore the voluntary nature of their decision and the importance of family ties and affinity. Two-thirds made the decision spontaneously and voluntarily, with most doing so from the outset. Eighteen percent indicated that they took on caregiving gradually as the symptoms of the disease worsened. Fourteen percent said they did so out of “responsibility”, while only two caregivers felt obligated and another two did so out of necessity.
Regarding motivations, the primary reason was that the ill person was a family member (52.3%): “she’s my wife”, “we live together as a couple”, “he’s my son, and I want the best quality of life for him”, “she’s my sister”, “taking care of my mother as she took care of me”, “I’m the head of the family”, “preserving the family project”, “the family looks after its members”, “protecting the family”. One in three caregivers cited affective and sentimental reasons as their main motivation for becoming a caregiver.
Most rated the quality of the care they provided as equal to or better than that provided by a woman. Statements included “No one’s going to take care of her better than I can; I know her very well”, “both genders can perform almost all caregiving tasks”, “I take on any task that’s needed and never turn my back on it, no matter how unpleasant it is”, “I believe I do it as well as any woman”, “care is not a matter of gender”, “the level of care and ability doesn’t depend on gender”, “I feel equally or even better prepared than a woman”, “what a woman can do, a man can also do”, “anything a woman could do, I do”, “I’m stronger as a man, and since I also have MS, I understand it well”, “if you have an interest, you learn, and quality comes with practice”. Only two caregivers noted their lack of experience, stating that a woman would do better: “women adapt better”, “I don’t know much about housework”.
3.4. Perceived Burden
The mean score on the Zarit Burden Interview for the entire sample was 23.9 (
SD = 10.6).
Table 3 shows the results broken down by burden level. One in three FCs (31.8%) reported mild-to-moderate burden as a result of their caregiving. Fifty-six percent reported a moderate-to-intense burden and would need to modify their caregiving approach to the dependent person. Finally, 11.4% of caregivers experienced a high level of burden, which carries an elevated risk of developing illnesses, especially depression and anxiety [
6,
8,
13,
22].
3.5. Perceived Quality of Life
In general, caregivers rated their quality of life and health as average, neither good nor bad, with mean scores of 54 and 52.8 out of 100, respectively (
Table 4). However, one in three perceives their quality of life as very poor (25 points). When assessing the different components of health and quality of life, scores rose to 60 or above in areas such as physical health, psychological health, and environmental quality. In contrast, the rating of social relationships drops to 53 points, consistent with their general perception of quality of life and health.
The dimension rated lowest in their quality of life relates to social relationships, which include indicators such as personal relationships, social support, and sexual activity.
3.6. Relationship Between Perceived Burden and Quality of Life
To assess the relationship between perceived burden and quality of life, Zarit test results were categorized into four levels, as none-to-mild, mild-to-moderate, moderate-to-severe, and severe. Subsequently, ANOVAs were conducted to compare WHOQOL scores across these groups.
Results show significant differences between the burden level and several quality of life dimensions, as detailed below (
Table 5). Caregivers with severe burden reported significantly lower quality of life than those with no or mild burden. The effect size (η²) was considerable, explaining between 18% and 35% of the variance in quality of life.
Specifically, overall quality of life declines drastically, from an average of 60.7 points among caregivers with mild-to-moderate burden to 56 points for those with moderate-to-severe burden and to 25 points for those reporting severe burden. Similarly, dimensions of physical health, psychological health, and environmental quality also show a significant decrease among caregivers with higher burden levels. However, no significant differences were found in the scores for social relationships or general health, suggesting that these areas may not be as affected by perceived burden.
These findings underscore the importance of addressing caregiver burden not only from an emotional perspective but also considering its impact on physical health, psychological well-being, and environmental perception. Caregivers with high burden levels need interventions to improve their overall well-being and prevent deterioration in their quality of life.
3.7. Relationship Between the Dependent Person’s Functionality and the Caregiver’s Burden and Quality of Life
Regression analyses were conducted to examine the relationship between indicators of the dependent person’s functionality (type of MS and disability level) with the perceived burden (ZBI) and the caregiver’s overall quality of life (WHOQOL1). Results showed that both regression models were statistically significant.
In the first model, where perceived burden (ZBI) was the dependent variable, the type of multiple sclerosis was found to be a significant predictor (see
Table 6). Specifically, compared to PP MS, RR MS showed a significant negative association with perceived burden,
b = −23.89,
p < 0.01, 95% CI [−40.57; −7.31], with an
sr² = 0.017, 95% CI [−0.03; 0.37]. SP MS was also a significant negative predictor,
b = −19.37,
p < 0.05, 95% CI [−36.83; −1.90], with an
sr² = 0.10, 95% CI [−0.06; 0.26]. Disability level did not reach statistical significance. The model explained 22% of the total variance (
R² = 0.220, 95% CI [0.00; 0.37]).
In the second model, with overall quality of life (WHOQOL1) as the criterion, both MS type and disability level were significant predictors (see
Table 7). Using PP MS as a reference, RR MS was a significant positive predictor,
b = 36.22,
p < 0.05, 95% CI [6.87; 65.56], with an
sr² = 0.10, 95% CI [−0.04; 0.23], as was SP MS,
b = 37.78,
p < 0.05, 95% CI [6.88; 68.69], with an
sr² = 0.09, 95% CI [−0.04; 0.23]. On the other hand, having more than 65% disability was a significant negative predictor of quality of life,
b = −39.84,
p < 0.05, 95% CI [−70.33; −9.34], with an
sr² = 0.11, 95% CI [−0.04; 0.25]. The model explained 40.4% of the total variance (R² = 0.404, 95% CI [0.12; 0.54]).
3.8. Gender Dissonance and Self-Stigma
To explore the relationship between the male caregiving role and the gender perception of caregiving tasks, two aspects were evaluated, the perceived femininity/masculinity of the tasks and the level of self-stigma among male caregivers.
3.8.1. Task Femininity
Table 8 presents the average scores obtained for each task on a scale from one (entirely masculine) to five (entirely feminine). Scores higher than three indicate that tasks are perceived as more feminine than masculine.
The results show that 12 tasks are perceived as feminine (M > 3), seven as masculine (M < 3), and five as neutral (M = 3). Basic daily life care and instrumental care are predominantly perceived as feminine, while socio-practical care is mostly seen as masculine, with the exceptions of emotional support and keeping the patient occupied.
This gendered division of caregiving tasks aligns with cultural stereotypes prevalent in Andalusian society [
23,
24]. However, when considering the standard deviation, most tasks tend to be perceived as gender neutral. This suggests that caregivers in this study may have responded based on contemporary societal perceptions—ones that view traditional gender norms as outdated—rather than their personal beliefs, which are likely influenced by their age and the societal context in which they were raised.
It is noteworthy that caregivers provide greater support in instrumental and socio-practical care (see
Table 2), suggesting that gender dissociation primarily occurs in the former. Five of the tasks requiring the most time investment are considered feminine, including shopping, performing household chores, preparing meals, providing emotional support, and keeping the dependent person occupied.
3.8.2. Self-Stigma Among Male Caregivers
Table 9 summarizes the results of the shortened self-stigma scale by Mak and Cheung [
21], which evaluates three components of self-stigma, namely cognitive, affective, and behavioral components. Each item was scored using a 4-point Likert scale (1: strongly disagree; 2: disagree; 3: agree; 4: strongly agree) with no neutral option. The score for each of the three components corresponds to the average of its three items. Finally, we dichotomized the Likert scale values as follows: 1 and 2 = Yes; 3 and 4 = No.
Overall, only 16% of caregivers acknowledged experiencing cognitive self-stigma. This suggests that while gender dissonance might generate cognitive discomfort, it does not significantly affect affective or behavioral levels. Male caregivers do not appear to perceive caregiving as socially stigmatizing.
5. Limitations
This study has several limitations, and its results should be interpreted with caution. The sample size was relatively small and purposive, limiting the generalizability of the findings to this specific demographic profile. Future studies should aim to recruit larger and more diverse samples. The retrospective and cross-sectional design of the study prevents establishing causal relationships between predictor variables and outcomes. Longitudinal studies are necessary to explore these causal links more thoroughly.
Additionally, the use of self-reported scales in this study may introduce bias. The study adopted a socio-health focus, relying on evaluations conducted by the Spanish Public Administration as a proxy for the level of disability in PwMS. While this approach aligns with local assessment practices, it does not utilize internationally recognized scales such as the EDSS or PDSS, making direct comparisons with other studies more difficult.
Moreover, we did not collect clinical data on PwMS, such as the number of relapses or disease activity, which are factors that can significantly influence caregiver burden. Future research investigating gender differences in the psychosocial functioning of MS caregivers should incorporate and analyze a broader range of clinical variables related to patients.
6. Conclusions
This study underscores the complexity of the role of male caregivers of PwMS. Along with the physical and emotional burdens commonly associated with informal caregiving, these men navigate challenges related to traditional gender stereotypes. While some experience gender dissonance, the study found that levels of self-stigma among male caregivers were generally low. Most participants employed strategies to reconcile caregiving with their masculine identity, whether by integrating caregiving into traditional masculine roles, adopting a gender-neutral perspective, or redefining masculinity to encompass caregiving tasks.
These findings highlight the adaptability of male caregivers in managing the interplay between caregiving and societal expectations of masculinity. They also emphasize the importance of developing tailored support interventions that address the unique experiences of male caregivers, help them navigate gendered challenges, and promote their overall well-being in the caregiving process.