Abstract
Purpose
Grounded in the socio-ecological model of health, this study aims to understand the broader impact of adult attention deficit hyperactivity disorder (ADHD) on the family system. With a notable gap in knowledge concerning the impact of adult ADHD on spouses’ well-being, this research explores the lived experiences of women in relationships with partners diagnosed with ADHD.
Material and methods
Using a descriptive qualitative phenomenological approach, we conducted semi-structured interviews with thirteen women without ADHD, to gain insights into their experiences.
Results
Three main themes were identified- ADHD in Everyday Life, Burden Experience, and Women’s Coping Strategies for managing ADHD within relationships. The findings suggest that partners’ ADHD symptoms involve a burden on women. In response, women developed coping strategies such as learning about ADHD, setting limits, and cultivating partnership by creating bridges to compensate for ADHD-related barriers.
Conclusions
This study highlights the substantial burden experienced by women in a relationship with partners diagnosed with ADHD, suggesting they should be recognized as caregivers and a potentially vulnerable group at risk. However, the homogeneous nature of our sample, focusing on white, heterosexual women, underlines the need for further research to better understand the impact of adult ADHD on diverse partners’ functioning and health, as well as pathways to support them.
IMPLICATIONS FOR REHABILITATION
Women partners of adults with attention deficit hyperactivity disorder (ADHD) often fulfill a caregiving role that can create a substantial burden.
Healthcare providers working with adults diagnosed with ADHD are encouraged to recognize the broader social context of their patients and validate the burden experienced by both partners living with the implications of this health condition.
Healthcare providers can offer supportive measures for both partners, such as education and counseling to facilitate a deeper understanding of the unique challenges posed by ADHD, and to provide guidance on effective coping strategies.
Interventions are needed to support women in relationships with adults with ADHD.
Future interventions might include peer support groups, individual counseling, or couples therapy that specifically addresses the unique challenges of living with ADHD in a relationship.
Introduction
Attention Deficit Hyperactivity Disorder (ADHD) is a neurodevelopmental disorder characterized by symptoms of inattention, hyperactivity, and impulsivity, causing significant impairment in functioning and quality of life [Citation1]. ADHD affects approximately 5.3% to 7.2% of school-aged children worldwide, and about 2.5% of adults [Citation2–4], with a higher incidence among male children and adolescents than females [Citation1,Citation5]. The negative impact of ADHD on multiple functional domains, including academic and occupational performance, social relationships, and overall health and well-being, is well-documented [Citation6–8]. It is considered a chronic neuropsychiatric health condition that requires lifelong management [Citation9,Citation10].
The broader impact of ADHD extends beyond the individual and affects various social systems, as highlighted by the socio-ecological model of health [Citation11,Citation12]. This model emphasizes the dynamic relationship between an individual’s health and their ecological contexts, with the microsystem closest to the individual having the strongest influence on their health outcomes and determinants, encompassing immediate surroundings, including interactions and relationships.
Chronic neuropsychiatric conditions such as dementia, stroke, schizophrenia, depression, anxiety, and bipolar disorder have a profound impact on the lives of informal caregivers, including partners. Studies have consistently shown that caregivers experience higher levels of psychological distress, perceived burden, and reduced quality of life (QoL) [Citation13–21]. Moreover, caregivers also display lower levels of social interests, avoidance, and resignation [Citation22] and participate less in leisure activities compared to non-caregivers [Citation15,Citation23]. Cognitive health conditions were found to be the primary cause of caregiving burden, and women were at higher risk for burden than men [Citation24–27]. The impact of chronic health conditions on the family system has gained increasing attention in health sciences [Citation28].
Previous research indicates that adult partners, particularly women, are vulnerable to the burden of living with a person with a chronic health condition [Citation29,Citation30]. Ersoy and Eersoy [Citation31] found that women without ADHD who are in a relationship with a partner diagnosed with ADHD (PwADHD) reported a greater negative impact of ADHD on their marriage compared to men in the same situation. This finding is in line with the results of other studies stating that problems in marital relationships affect women’s psychological well-being more than men’s [Citation32,Citation33]. Although the impact of adult ADHD on romantic relationships has been studied in various contexts, including domestic violence, divorce, sexual relations, and relationship satisfaction [Citation34–39], there is a lack of research on the lived experiences of individuals in relationships with PwADHD, especially from the perspective of women who may be at increased risk for negative effects.
This study aims to fill this research gap by posing the research question: “What are the lived experiences of women in relationships with partners diagnosed with ADHD, and how do they navigate their day-to-day lives?.” This research will enhance our understanding of the impact of adult ADHD on partners, adding a valuable socio-ecological layer to the existing literature on the outcomes of ADHD. Findings may inform further research and more family-oriented interventions for adults with ADHD.
Materials and methods
Design
Guided by a phenomenological approach, this study adopted a qualitative descriptive design, aiming to respond to our research question by probing into the breadth of subjective experiences. Our target was to study the varied lived experiences of women with ADHD-diagnosed partners, aligning with the inherent purpose of a phenomenological approach to reveal the essence of these experiences [Citation40,Citation41]. Conscious of our individual biases and influences, we committed to transparency in our interpretation and understanding of the data. In alignment with this commitment, we followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [Citation42] to guarantee comprehensive methodological reporting (refer to Supplementary File 1).
Participants
To ensure the specificity of our study population, participants had to meet specific criteria, including the male partner being diagnosed with ADHD by a certified medical professional based on self-report. The female partner did not have an ADHD diagnosis, and the couple had been in a relationship for at least two years. We used the ADHD Self-Report Scale-Screener (ASRS-S) to assess ADHD symptoms in both partners and excluded participants if the male partner scored below the ADHD cutoff or the female partner scored above the cutoff. Participants with major health conditions that could affect daily functioning in any family member were also excluded. We focused on heterosexual couples to explore the non-ADHD partner perspective in line with previous research on gender differences in adult ADHD gender in terms of prevalence, symptoms profile, comorbidity and psychosocial impairment [Citation31,Citation43]. However, we acknowledge that our findings may have limited generalizability to other types of relationships, and further research is needed to explore the experiences of individuals in non-heterosexual relationships living with partners with ADHD. Additionally, we set an age limit of 60 to avoid additional intervening factors related to advanced age, and couples had to have been in a relationship for over two years to ensure that participants had a sufficient history of interactions and experiences with their partners, which could provide more reliable and accurate information about their experiences in the dyad ().
Table 1. Participant characteristics.
Measures
In this study, the Adult ADHD Self-Report Scale (ASRS) was used to assess ADHD symptoms in both partners. The ASRS is a validated self-report questionnaire based on DSM-IV criteria that contains 18 items rated on a 5-point scale (0 = “never” to 4 = “very often”). A screening score of ≥ 51, calculated as the sum of all items, has been shown to be predictive of ADHD symptoms [Citation44]. A socio-demographic questionnaire was also employed to gather information on participants’ background and relevant factors such as age, marital status, education, household income, children, partner ADHD medication use, and psychiatric comorbidities. The inclusion of psychiatric comorbidities in the questionnaire was aimed to provide an informative description of the sample in terms of common co-occurring conditions in adults with ADHD.
A semi-structured qualitative guide was developed by both authors based on a literature review on the experiences of caregivers of individuals with chronic health conditions and refined through two pilot interviews. The open-ended questions served as a general outline, while the order of the questions was flexible to allow participants to share their stories in their own way and foster trust. The interview guide can be found in .
Table 2. Interview questions.
Procedure
The institutional review board (IRB) of the Hebrew University approved this study (Approval no. 2072020), and participants were recruited in Israel through social media advertisements, flyers, and word-of-mouth recommendations. The advertisement provided details about the study, the authors’ credentials, and contact information for the first author, a PhD student and occupational therapist, and the second author, a researcher in ADHD and quality of life. To assess eligibility and maintain anonymity, potential participants underwent an initial phone screening. Women who met the eligibility criteria were sent a unique link to a secure online platform to complete a socio-demographic questionnaire, thus maintaining anonymity and privacy as this procedure didn’t link their responses to their personal email addresses.
Individual interviews were conducted by the first author, an occupational therapist, and took place either face-to-face or through the Zoom virtual platform, depending on the participant’s preference. The authors acknowledge the difference in the quality of interview content and rapport building in face-to-face interviews vs. Zoom, and therefore, took extra care to establish a comfortable environment and open dialogue with participants in both formats. The interviews were conducted in Hebrew, and the average length was approximately 120 min (range: 90-150 min). The interviews were audio-recorded and transcribed verbatim by a professional transcription company in Hebrew. Then, the transcripts were translated into English by two bilingual translators proficient in both languages. The translations were cross-checked for accuracy by the authors and any discrepancies were discussed and resolved. The interviews took place from December 2020 to December 2021.
Participants in our study ranged in age from 25 to 58 years and had been in relationships with partners with ADHD for 2 to 32 years. Most participants had completed post-secondary education or higher and had a family income that was evenly distributed between average and above average, with one participant reporting a below-average income. No participants with ADHD reported additional comorbidities. The sample size of 13 participants was deemed sufficient to reach saturation, consistent with other phenomenological studies exploring individuals’ experiences with health conditions [Citation45,Citation46].
Data analysis
Our study employed a reflexive thematic analysis (TA) within a qualitative phenomenological descriptive design, following the guidelines of Braun & Clarke [Citation47] and was inductively applied. Reflexive TA emphasizes the researcher’s subjectivity as integral to the analysis, facilitating a deeper engagement with the data and its interpretation [Citation47]. Given our prior experiences and preconceptions related to ADHD care, we understood they could potentially shape our interpretations of the interview responses. Therefore, we prioritized highlighting our participants’ narratives and consistently challenged our assumptions to ensure their alignment with the data.
For the data analysis, we utilized ATLAS.ti software and adhered to Braun & Clarke’s six-phase process [Citation48]:1. Familiarization with the data involved carefully reading the interview transcripts to note preliminary ideas and identify recurring patterns.; 2. Generating initial codes, in which we tagged noteworthy data with codes, independently coding to minimize bias; 3. Searching for themes, a phase during which we clustered relevant coded data extracts under each potential theme, and identified subthemes for a more nuanced analysis; 4. Reviewing themes, where we scrutinized themes for their coherence and applicability to the coded extracts, ensuring an accurate representation of the entire dataset; 5. Defining and naming themes, a phase during which we refined and verified themes against the dataset to capture the full spectrum of participants’ experiences. In this phase, we strived to stay close to the participants’ own language to ensure the themes remained grounded in the data; and finally. 6. Writing the report, where we selected representative examples for each theme, enabling readers to fully comprehend the nature and extent of the themes.
To enhance the analysis’s robustness, we conducted inter-rater reliability checks and resolved differences through discussions. A coding tree was constructed to visualize the relationships between the main themes and sub-themes. Our reflexive thematic analysis allowed for continuous questioning and reassessment of our understanding, fundamental to the reflexive TA approach [Citation47].
Results
The qualitative analysis of data gathered from the 13 participating women yielded three primary themes: (1) ADHD in Everyday Life, (2) Burden Experience, and (3) Women’s Coping Strategies. These themes were further subdivided into sub-themes, as displayed in . This interplay between themes and sub-themes offered insights into the experiences of women living with partners diagnosed with ADHD. To support and illustrate the themes, quotations from the interviews were utilized. Please refer to Supplementary File 2 for examples of the coding strategy.
Table 3. Themes and subthemes obtained from interview.
Theme 1: ADHD in Everyday Life
Participants described their partners’ functioning in everyday life, which were divided into sub-themes: (i) ADHD-related Challenges, (ii) Strengths alongside Challenges: “‘Two sides to the coin’,” and (iii) The Impact of Context: “‘It depends’.”
ADHD-related challenges
Participants detailed various challenges linked with their partners’ ADHD, such as emotional dysregulation, impulsivity, inadequate planning and time management, inattentiveness, and inconsistent productivity. For example, emotional dysregulation was reported: “It’s like it suddenly erupts out of nowhere. Some days he’s edgy, loses patience, and yells at the children” (P2). Others reported impulsivity: “Sometimes he buys impulsively, just because he felt like it” (P11). Insufficient planning and time management were also concerns: “If he’s making sandwiches for the children in the morning, he’s unable to plan ahead to know what and how many sandwiches they should have for school” (P8). Inattentiveness was also noted: “He fails to notice what’s happening at home” (P12). One participant described inconsistent productivity: “In the past 15 years, he’s been dismissed 4-5 times… When he does secure a job, it’s often not in his field, so his earnings are considerably lower than they should be” (P2).
Strengths alongside challenges: “‘Two sides to the coin”’
Participants acknowledged both the positive and negative aspects of their partner’s ADHD symptoms. They appreciated their partner’s positive traits, such as creativity, humor, and intense focus, but these attributes were contrasted with the associated challenges. One participant noted, “He has the ability to delve deeply into things he’s interested in, and I value that, but it also leads to him focusing on trivial details while overlooking significant ones” (P1). Another remarked, “He’s fun, supportive, warm, funny, intelligent, and has a good memory, but he often remembers irrelevant details” (P3). One participant pointed out, “He cooks well, but it’s not always ready on time” (P12). The frequent usage of “but” following the description of positive traits underscores the inherent ambivalence experienced by these women, reflecting the dual nature of living with a partner with ADHD.
The impact of context: “‘It depends”’
Participants observed that various contextual factors, such as temporal and social circumstances, the level of everyday demands, and the effectiveness of ADHD medication, influenced their partners’ ADHD symptoms. For instance, one participant noticed that as life demands intensified, her partner’s difficulties became more apparent: “When I first met him, I knew he was a good person with a big heart. However, as responsibilities of raising a family and managing a heavier workload increased over the years, his struggles became increasingly pronounced” (P2). On the other hand, some challenges seemed to have subsided over time, as observed by one participant: “During the initial years of our relationship, my partner was highly dysregulated and prone to fits of rage. But over time, the frequency of such episodes has lessened” (P3).
Participants also described day-to-day variability in their partners behaviors. As participant 9 described her partner’s behavior changes coinciding with increasing academic demands as a student: “When academic demands escalate, my partner becomes tense and stressed, which can lead to aggressive behavior. For example, if he struggles with the studies, he may become angry and distant the following day.” Another factor affecting variability, was ADHD medication. Most participants whose partners took ADHD medication reported observing a positive impact on their functioning, “there’s a profound difference in my partner’s behavior on days when he’s medicated versus the days he isn’t. He is less attentive and more easily distracted when not taking it” (P10). In addition, women described a discernible difference in the partners’ behavior in social situations compared to their behavior within the family context, “in public, my partner appears to function well, and he’s always keen to assist others. However, his struggles become more visible within the confines of our relationship” (P11).
Theme 2: Burden Experience
Participants reported feeling overwhelmed by daily responsibilities that impacted them physically, psychologically, and socially. They commonly described their role in the household as akin to a “‘CEO”’ or “‘super manager,”’ leading to feelings of exhaustion. This burden often felt imposed, articulated through statements such as “I have no choice” and “If I don’t do it, it won’t get done.” This sense of responsibility revealed a longing for relief. The women experienced a multidimensional burden, which we subdivided into three sub-themes: (i) “‘It’s like having an extra child,”’ (ii) “‘Less time for what’s important to me’,” and (iii) “‘It doesn’t make sense to me’.”
“‘It’s like having an extra child”’
A recurring theme among participants was that the relationship with their partner with ADHD felt like taking care of another child, often referred to as a “problem child.” Participants expressed being overwhelmed by additional responsibilities such as household management and childcare. One participant articulated, “I have four children. I didn’t sign up for a fifth” (P3). Others voiced frustration over the need to constantly repeat themselves, with one saying, “I must ensure three times that he’s paid attention to what I’ve said, much like with a young boy” (P13). The responsibilities related to childcare and household maintenance were reported to mainly fall on the women. One participant stated, “almost everything related to taking care of the children and maintaining the house is on me, almost 100%. I wish it wasn’t all on me” (P3). The influence of the partner’s ADHD on women’s social relationships was also noteworthy, with them frequently being the ones planning and organizing social events. One participant said, “social relationships are really affected by his ADHD. Usually, I’m the one deciding and organizing our social meetings. I wish he would do take it on himself sometimes” (P1).
In some cases, woman felt the need to protect their partners from the consequences of their ADHD, leading to a dynamic where the woman takes on a “‘bossy”’ role, and the partner becomes passive. One participant described, “I can’t watch him fail and always end up saving him (from procrastination at work). Each time I help, he takes less responsibility, and I become the nagging one, as if I’m his mother. He gets angry and yet still doesn’t finish on time” (P8).
Participants often mentioned their partner’s unpredictable behavior similar to that of a child, causing them stress and discomfort. One participant said, “It’s not always possible to predict his mood upon returning from work” (P6). Another participant noted, “He has episodes where he becomes preoccupied with a thought and can’t sleep. You never know how long these episodes will last” (P9). Additionally, participants reported feelings of embarrassment due to their partner’s behavior in social situations. For instance, one participant recalled a moment in the middle of the night calling her family for assistance, “I was terribly embarrassed. I was ashamed in calling my family to pick up my intoxicated partner” (P3).
The burden of feeling unseen in their role as a “‘parent”’ in the partnership was a challenge for the participants. Unlike traditional parent-child relationships where parental roles are acknowledged, the participants felt invisible and unrecognized. One participant said, “I complete all the morning tasks for the kids, and my partner doesn’t even realize these tasks exist” (P12). Another expressed a similar sentiment, “Those without ADHD in the family cannot comprehend the challenges we endure” (P5).
Participants also felt that their needs were not seen by their ADHD partner. As one participant explained, “Despite his love for me, my needs often go unseen. Things must reach extremes for him to notice” (P1). This lack of recognition of their efforts and their unmet needs contributed to the emotional burden the participants experienced.
“‘Less time for what’s important to me”’
Participants reported that their partner’s ADHD increased their workload, consequently diminishing the time and energy they had for personal needs and pursuits. They felt overwhelmed by the various responsibilities, which detracted from crucial aspects of their lives, including self-care, leisure, and professional endeavors. As one participant expressed, “Living with a partner who has ADHD means managing all family-related tasks, leaving me barely anytime for my personal interests” (P1). Another participant described coming home to disarray, “When my partner works from home, the ensuing chaos leaves me drained. I end up sorting everything out and forfeiting my own plans for the evening, such as taking a walk or preparing a nice dinner” (P9).
Participants also conveyed difficulties balancing their partner’s needs with their own, often compromising their personal desires and necessities, encompassing aspects like health and social engagements. For instance, one participant elaborated, “I frequently have to handle my partner’s health matters, such as scheduling doctor’s appointments. It becomes a burden as I have to plan and organize his tasks as well. It’s especially challenging when it comes at the expense of taking care of my own health” (P1). Another participant shared, “The incessant stream of phone calls from my partner and children during my absence can be overwhelming. I often opt against work trips to avoid remotely managing everything it’s simply not worth the stress” (P2).
“‘It doesn’t make sense to me”’
The women in the study expressed confusion and frustration due to the inconsistent and variable nature of their partner’s functionality, often attributed to ADHD symptoms. They struggled to comprehend why their partner could perform well in certain situations yet struggle in others. These discrepancies sparked questions about the root of such erratic behavior- whether it was linked to ADHD, an inherent personality trait, or a lack of motivation. One participant described this contradiction, “My partner maintains good habits, like running regularly, yet falters when it comes to remembering other things. This is baffling—it simply doesn’t make sense to me” (P11). Another observed the disparity between her partner’s professional and personal conduct, “It’s astounding how my partner can efficiently manage a work project with seemingly no ADHD interference, yet struggles with multitasking at home. I can’t grasp this disparity” (P3). This inconsistency induced feelings of confusion and frustration as participants attempted to reconcile their partners’ conduct with their sentiments towards them. As one participant articulated, “Despite knowing that my partner loves me, he was aware of what bothered me but didn’t make amends” (P13).
Theme 3: Women’s coping strategies
Maintaining a partnership when one partner has ADHD was described by participants as a continuous learning journey of coping strategies, a journey which is both challenging and rewarding. The study discerned three sub-themes of coping strategies that the women adopted: (i) Understanding and Accepting ADHD: “‘It is what it is’,” (ii) Self-care through Setting Limits: “‘Protective boundaries”’ and “‘Protected islands,”’ and (iii) Cultivating Partnership and Building Bridges.
Understanding and Accepting ADHD: “‘It is what it is”’
Participants recognized that understanding ADHD, be it through self-education, therapy, or conversations with informed individuals, facilitated acceptance of their partners’ behaviors. One participant explained, “I’ve read a lot, sought therapy, and conversed with a friend knowledgeable about ADHD. These resources have improved my understanding of my partner’s behavior” (P12). Another participant highlighted the importance of learning about ADHD, stating, “Reading a book about ADHD after my son’s diagnosis was significant. I gained profound insights about my husband through that book” (P8). Nevertheless, in certain situations, participants found it necessary to remind themselves of their partner’s condition. As one participant put it, “During tough moments, I remind myself that my partner’s actions are not intentional, they’re related to the ADHD” (P7). At times, participants accepted their partner’s behavior, even if it wasn’t ideal, and were open to compromise or adjust their expectations. For instance, “I may not enjoy taking charge of household responsibilities, but I understand that my partner’s struggles with certain tasks are not due to a lack of effort or laziness, but rather to his ADHD. I manage these tasks, even if it occasionally feels like I’m the ‘‘CEO’’ of our home” (P12). Another participant mentioned, “I’ve learned to adapt to the instability and unpredictability of plans, understanding that everything can change due to my partner’s ADHD” (P4). Lastly, acceptance also permeated financial stress scenarios. As one participant put it, “The impact of my partner’s ADHD on our financial stability can be frustrating at times, but I’ve learned to accept it and recognize that it is what it is” (P3).
Self-care through setting Limits: “‘Protective boundaries”’ and “‘protected islands”’
To protect their well-being from the challenges posed by their partners’ ADHD-related behaviors, participants employed strategies that involve setting protective boundaries such as avoiding interference with their partners’ responsibilities, and drawing “red lines” in extreme situations. As one participant remarked, “I steer clear of helping when he’s doing the laundry, because if I get involved, he relinquishes his responsibility” (P3). Another participant reflected on withdrawing from the “rescuer” role, “I used to help him organize his work presentations, but with time, I realized this approach wasn’t beneficial for either of us. So, I had to stop trying to ‘rescue’ him” (P13). In extreme situations, such as emotional outbursts or unsafe driving, participants enforced clear boundaries. One participant explained, “There are times when I have to shield the children from my partner. I do this by setting clear boundaries and saying ‘enough’. For example, if he raises his voice at the children, I have to step in. I also don’t allow him to drive out of town with the children because it too risky” (P2).
Another strategy participants employed was creating “protected islands” to decrease their dependence on their partners’ functioning. This involved recognizing and prioritizing personal needs, establishing physical and temporal separation (such as taking time alone or leaving the house), and turning to others for support. For instance, one participant said, “I’m learning to carve out time for myself. I realized that if I don’t, no one else will” (P12). Another participant mentioned taking time for herself, noting “In some situations, the best way to cope is to physically leave the house and take some time for myself. When we’re both at home, I end up responsible for everything” (P13). The participants also found ways to take care of themselves by discovering relaxation techniques that did not solely rely on their partners. One participant noted, “I’ve learned to find my own ways to relax that don’t depend solely on my partner, and I think this is a healthy development in our relationship” (P6). They also sought support from friends, family members, or paid service providers to reduce their dependence on their partners. For example, one participant shared, “I lean heavily on my friends. They help me with a lot of things that my partner isn’t able to” (P2).
Cultivating partnership and Building Bridges
The participants in the study underscored the importance of cultivating partnership in their relationships. Despite the challenges posed by ADHD, many reported maintaining a close and supportive friendship with their partners. They stressed the importance of acknowledging their partner as an adult, preserving the core of their friendship, and employing a cooperative approach in daily tasks and life’s shared journey. Participants shared sentiments like, “We’ve matured together over the years, and our friendship has been our lifeline during tough times” (P2) and “I’ve known him for years, and my love for him hasn’t changed. We work as a team and continually learn from each other” (P4).
To nurture healthy partnerships and overcome the obstacles posed by ADHD, the participants employed ADHD friendly strategies. Effective organization and lucid communication were unifying themes, aiding in circumventing the neurocognitive barriers associated with ADHD. These strategies included joint weekly planning, list-making, clear role definition, routine establishment, maintaining eye contact during communication, repeating critical instructions, verifying understanding of crucial messages, and avoiding overwhelming their partners with multiple instructions simultaneously. One participant shared, “We assigned household chores clearly and made a task list to ensure both of us knew our responsibilities. We have a weekly check-in to make sure he’s on track” (P1). Another participant added, “When I remind him of something important, I make sure to catch his attention and ask him to repeat it back to me” (P7). Participant 12 elucidated, “I try to keep our conversations focused on one topic at a time and ensure I communicate precisely what I need him to do, leaving no room for misunderstanding. It has made life easier for both of us.”
Additionally, participants were mindful of their partners’ regulation levels, taking into account factors like emotional state and energy levels, to guarantee their partners were receptive to communication and to foster a supportive environment. They also selected suitable times and locations for discussions to facilitate effective and clear communication. One participant remarked, “I’m attuned to my partner’s emotional state and choose the right time to discuss sensitive topics. Waiting for a ‘‘cooler’’ moment has significantly improved our quality of life. I also take into account the decrease in my partner’s focus in the evenings, after the effects of his medication have worn off” (P1). Another participant suggested, “Walking together can be an excellent setting for discussing sensitive matters, as it helps him stay calm and focused” (P7).
Discussion
This study aimed to provide insight into the lived experiences of women living with a partner diagnosed with ADHD, from their perspective. As far as we know, this is the first qualitative study that gathers such firsthand accounts. The study brought forth three themes: ADHD in Everyday Life, The Burden Experience, and Women’s Coping Strategies.
The impact of ADHD on women’s Experience of burden
Our findings indicate that women experienced burden due to their partners’ ADHD manifestations, encompassing emotional outbursts, impulsivity, forgetfulness, and difficulties in managing day-to-day tasks. These accounts align with core ADHD symptom clusters, including inattention, impulsivity/hyperactivity, as well as emotional and behavioral dysregulation (e.g., executive function deficits) [Citation1,Citation9,Citation36]. These symptoms intruded into multiple life domains, including domestic and parenting tasks, social relationships, health management, and professional life. These findings underscore existing evidence that portrays ADHD as a chronic health condition profoundly impacting family life [Citation2,Citation9,Citation10,Citation49,Citation50].
Participants in our study expressed feeling overburdened by the responsibilities they bear and longed for alleviation. They detailed a dynamic in their relationships where they assumed a “parental” role, while their ADHD partners adopted a more dependent position. This led to feelings of being overstretched and having a disproportionate sense of responsibility for their partners’ well-being. The women highlighted that their burden was intensified by its invisibility, as they lacked recognition and validation for their efforts, both from their partners and society. This burden depleted resources, leaving the women with little left for their own needs. These experiences of burden, invisibility, and scarcity of self-care resources echo the growing evidence of spousal burden in other neuropsychiatric conditions such as mild cognitive impairment, bipolar disorder, chronic depression, and autism spectrum disorder [Citation51–55].
An additional facet of the burden related to the variability and inconsistency of their partners’ symptoms and levels of functioning. The women reported feeling perplexed and frustrated by this profile, echoing sentiments like “When he wants to, he can” or “He knows exactly what to do but he still doesn’t do it.” These disparities challenged the women’s comprehension of their partners’ behaviors, causing confusion and lack of coherence when determining whether behaviors were ADHD-related or personality traits. This pattern aligns with emerging research identifying ADHD symptom variability across contexts as a hurdle to understanding the condition, which often results in stigma and delegitimization of the disorder [Citation9,Citation10,Citation56].
Moreover, the identified sub-theme of incoherence could be seen as impediments to health outcomes, based on Antonovsky’s Sense of Coherence (SOC) model [Citation57]. The SOC model posits that an individual’s capacity to understand and manage their environment is a vital salutogenic factor. Therefore, it’s crucial in understanding the negative psychological consequences experienced by the women in our study. As per a study by Välimäki et al. [Citation58], male caregivers demonstrated higher SOC than female caregivers, and a low SOC was correlated with caregiver depression and decreased health-related quality of life. This indicates that the women in our study, potentially exhibiting lower SOC, may be at an elevated risk of depression and poor health-related quality of life.
Women’s coping strategies for managing ADHD within relationships
Participants in this study elaborated on a range of coping strategies employed to manage the challenges associated with living with a partner diagnosed with ADHD. Coping strategies entail cognitive and behavioral endeavors to tackle demands and conflicts perceived as stressful or exceeding an individual’s resources [Citation59]. The women in this study shared their ongoing journey of learning effective ways to cope with the myriad of challenges posed by their partners’ ADHD, which included deepening their understanding of ADHD, practicing self-care, and cultivating their partnership.
Gaining a more profound understanding of ADHD had a beneficial impact on participants. They reported that the knowledge acquired about ADHD allowed them to comprehend their partner’s inconsistent and fluctuating behavior, thus facilitating acceptance. Moreover, seeking guidance from ADHD professionals or confiding in friends provided them with valuable insights and reminded them of the link between their partners’ frustrating behaviors and the underlying biological mechanisms.
Additionally, the women utilized a set of strategies to safeguard their well-being amidst their partners’ ADHD-related behaviors. These included (a) establishing protective boundaries by refusing to assume their partners’ responsibilities, setting “red lines” during extreme situations, and (b) carving out “protected islands” for self-care by lessening their dependency on their partners’ functionality, utilizing physical and temporal separation, and seeking support from others. These coping strategies align with those reported by partners of individuals with other conditions such as bipolar disorder, chronic depression, and autism spectrum disorder [Citation51,Citation55,Citation60], indicating their potential effectiveness in managing the challenges of living with a partner with ADHD, and other conditions that significantly impact relationships.
The final set of coping strategies revolved around cultivating partnership, which involved acknowledging and circumventing the inherent neurocognitive hurdles posed by ADHD in the relationship. Strategies such as effective communication, collaboration, and enhancing a sense of partnership aimed to perceive the ADHD partner as a mature individual, not a child. Participants commonly employed strategies such as list-making, role defining, establishing routines, making eye contact, verifying comprehension, and avoiding overwhelming their partners with too many instructions at once. Additionally, monitoring partners’ emotional states and energy levels was crucial for effective communication and nurturing a supportive environment. These findings align with the Dyadic Coping Model, which emphasizes a “we-perspective” in managing chronic health impairments and engaging in joint coping efforts [Citation61–63]. The phenomenological approach adopted in this study captured the nuanced experiences and coping strategies of women living with PwADHD, providing an in-depth exploration of subjective experiences and meaning-making processes within the context of ADHD.
In conclusion, this study illuminates the coping strategies employed by women with partners diagnosed with ADHD to manage the burden associated with the disorder. The path towards fostering partnership involves devising strategies to circumvent the neurocognitive barriers inherent to ADHD. While these findings echo strategies used by caregivers of partners with other health conditions, they provide a tailored description of how these strategies can be specifically applied in the context of ADHD.
Limitations
This study, while offering valuable insights, comes with several limitations that should be considered. Firstly, the sample used in our research was homogeneous, consisting solely of white, heterosexual female partners of individuals with ADHD. This, consequently, may limit the full generalizability of the findings to partners of other racial and ethnic backgrounds, or to other genders. Importantly, our study did not explore the experiences of individuals in same-sex relationships. As such, the findings may not fully encapsulate the potential additional challenges and unique dynamics present in these relationships when one partner is diagnosed with ADHD.
Secondly, our research did not consider situations where both partners have ADHD, a scenario that could present its own set of unique challenges and coping strategies. As a result, the current findings may not fully reflect the complexities inherent in these types of relationships.
Thirdly, the format of our interviews, conducted either via Zoom or in-person, could have influenced the interview data quality and participant responses. Technological challenges with Zoom, or logistical constraints for in-person interviews, might have impacted participant availability, willingness to participate, and the depth of their responses.
While this study offers a foundation, there is a clear need for further research in these underrepresented areas. Future studies should endeavor to include a more diverse range of couples. This would ensure a more comprehensive understanding of the relational dynamics when one or both partners live with ADHD.
Conclusion and recommendations
This study aimed to provide insight into the experiences of women living with a partner diagnosed with ADHD (PwADHD). It underscores the considerable burden borne by these women due to their partner’s symptoms, encompassing additional responsibilities, lack of recognition and resources, and an experience of incoherence that detrimentally impacts their physical, psychological, and social well-being. These findings suggest that female partners of individuals with ADHD should be recognized as caregivers and identified as a vulnerable group at risk, similar to caregivers of individuals with other conditions.
The study identified coping strategies employed by these partners to manage the burden associated with living with a PwADHD. These strategies involve gaining a deeper understanding of ADHD, setting limits for self-care, and cultivating partnership by “building bridges” over the inherent neurocognitive barriers caused by ADHD. Further research is crucial to better comprehend the impact of adult ADHD on partners’ functioning and health, and to identify strategies to support them.
Healthcare providers should consider the broader social context of the individual with ADHD and acknowledge the burden experienced by both partners living with the implications of this health condition. Interventions designed to support women in relationships with adults diagnosed with ADHD are urgently needed. These interventions should focus on providing support to both partners and could incorporate psychoeducation about ADHD and guidance on effective coping strategies.
In conclusion, the findings of this study offer valuable insights into the experiences of women living with PwADHD and the coping strategies they adopt to manage the burden. These insights could serve as the basis for developing future interventions and support mechanisms for this vulnerable group.
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This research did not receive specific funding from any agencies in the public, commercial, or not-for-profit sectors. The authors wish to extend their gratitude to all the participants who agreed to share their personal experiences and participate in this study.
Disclosure statement
The authors report there are no competing interests to declare.
Data availability statement
Authors agree to make data and materials supporting the findings or analyses presented in their paper available upon reasonable request (via an email to the corresponding author). Data will be shared only if the request is ethically correct to do so, where this does not violate the protection of human subjects, or other valid ethical, privacy, or security concerns.
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