Quality of Life and Burden in Caregivers of Patients with OCD: A Scoping Review

Abstract

Aim: This scoping review aimed to synthesize the quality of life (QoL) and perceived burden among caregivers of patients with Obsessive–Compulsive Disorder (OCD). Background: The QoL and burden among caregivers of patients with OCD is an important but under-researched topic, given that OCD can significantly impair the QoL of both patients diagnosed with OCD and their caregivers. Method: A scoping review approach was used to identify articles published in peer-reviewed journals between the years 2010–2024. The search yielded a total of 511 articles from 5 databases, namely, Science Direct, PsycInfo, PubMed, JSTOR, and Google Scholar. Ten articles that fit the inclusion criteria were selected. All the articles followed a quantitative approach; the mean age of caregivers was approximately 48 years, the number of caregivers ranged from 50 to 120, and the majority of the articles had samples with more female caregivers, mostly spouses/parents of the patient. Results: The four themes derived through the synthesis included caregiver support priorities, illness trajectory and caregiver strain, detrimental caregiver response, and socioeconomic disparities and QoL. Conclusion & Implications: Synthesizing the existing literature can guide the development of evidence-based strategies to alleviate the burden among and enhance the QoL of caregivers.

1. Introduction

Obsessive–Compulsive Disorder (OCD) is a psychiatric condition characterized by intrusive thoughts, interfering images, or urges (obsessions) and purposeful physical or mental actions (compulsions) that are performed to alleviate the anxiety associated with these thoughts or images [1]. The disorder can significantly impair the quality of life (QoL) of not only patients diagnosed with OCD but also their caregivers [2]. It has a prevalence rate of approximately 2–3% in the adult population, and its severity and progression can substantially impact both the patient and their caregivers or relatives [3,4]. Deinstitutionalization in the 1950s and 1960s ushered in a transition from hospital-based care to community-based care, and consequently, family members took a more active role in looking after patients with mental illness [5].

Furthermore, the duration and course of OCD vary among individuals. While some patients achieve remission after a single episode, others experience relapses between periods of remission. In more severe cases, OCD may persist as a chronic condition throughout an individual’s lifetime, leading to a progressive decline in the QoL of both the patient and their caregivers [6].

Patients with OCD often have many needs, and OCD may limit the person’s interpersonal and personal functioning. In fact, patients who receive treatment often continue to remain highly symptomatic. Research has identified four major needs of patients with OCD that are connected to treatments, symptoms, family, and QoL. Moreover, monitoring patient needs can help with prognosis [7]. Thus, family members and informal caregivers play a crucial role in the treatment plan of patients diagnosed with OCD.

Although OCD is primarily regarded as an individual psychiatric condition, its severity, progression, and outcomes should be examined within an interpersonal context [4]. The existing literature suggests a bidirectional relationship between OCD and family involvement: while family dynamics can influence the course of the disorder, the severity and persistence of OCD also contribute to the burden experienced by caregivers [4]. It is well established that caring for individuals with mental illness imposes significant challenges on caregivers, necessitating support systems that help them adequately manage the stressors associated with informal caregiving.

In addition, OCD may be thought of as one of the most crippling mental illnesses [8], and despite extensive research on the burden experienced by caregivers of individuals with dementia, schizophrenia, and depression, studies examining the impact of caregiving for patients with OCD remain limited [9].

Given this gap in the literature, a comprehensive understanding of the existing studies that explore the experiences of caregivers of patients with OCD is needed. Such a review would facilitate the development of theoretical frameworks and evidence-based protocols aimed at empowering caregivers, ultimately enhancing their QoL and potentially alleviating the severity of OCD symptoms in patients.

Through such reviews and empirical research, clinicians can better design interventions that provide caregivers with essential information and psychoeducation, enabling caregivers to support patients effectively while also addressing their own well-being. To the best of our knowledge, no existing review comprehensively examines QoL and burden dimensions among caregivers of patients with OCD. Therefore, this scoping review attempts to not only synthesize and focus on the research question of how caring for a patient with OCD influences one’s QoL but also understand the perceived burden among caregivers of patients with OCD.

Keeping in mind that scoping reviews are gaining popularity among researchers to synthesize evidence [10], we have used this method and followed the stages of identifying the research question, identifying relevant studies, study selection, charting data, and collating the results [11].

2. Materials and Methods

The main aim of this scoping review is to identify, select, and summarize the existing findings on the lives of informal caregivers of patients who are diagnosed with OCD. Informal care may be understood as providing unpaid care for dependent family members or friends, which can often cause mental and physical distress for the caregiver [12]. The life of informal caregivers may be understood in this review in terms of QoL and burden perception, which may include family burden or emotional burden. The review was conducted based on an accurately planned protocol to answer the research question, which was formulated using the PICO (patient problem or population, intervention, comparison and outcome) model and focused on understanding the existing knowledge about the QoL of and burden experienced by informal caregivers of patients with OCD.

From March to May 2025, we reviewed 511 articles that were published between the years 2010 and 2024, of which 10 met the inclusion criteria. The PRISMA guidelines were not used because a scoping review protocol was followed, and the guidelines of Arksey & O’Malley [11] were considered instead.

Table 1. Stepwise selection of articles.

Step 1: Identification of articles	Articles that dealt with caregiving for patients with diagnosed OCD were searched for on Science Direct, PsycInfo, PubMed, JSTOR, and Google Scholar, and 511 such studies were identified.
Step 2: Screening	Keeping in mind the inclusion criteria, the articles were scrutinized, and duplicates were removed, retaining only those relevant to the rationale of the scoping review, which was to understand the experiences of informal caregivers of patients diagnosed with OCD. Duplicates = 35 Studies related to OCD (other than caregiving experiences) = 97 Studies related to caregiving in other disorders, including schizophrenia, eating disorders, depression, agoraphobia, etc. = 369
Step 3: Inclusion	Ten studies met the inclusion criteria.
Step 4: Data extraction	Data were extracted from the selected articles. The data extraction table is part of the Supplementary Materials. It includes the following columns: author and date, aims/objectives, sample details, instruments administered, findings, and limitations (if mentioned).

details the steps used to select articles for this scoping review, and

Table 2. The PICO framework used to formulate the research question.

Population	Informal caregivers of patients diagnosed with clinical OCD (family members who care for the patient in some or other way).
Intervention/Issue	Experience of caregiving and its effect on QoL and the burden perceived through this experience.
Comparison	Not applicable because no comparison was conducted in this review.
Outcomes	Guidelines to ensure the well-being of caregivers, help improve their QoL, and reduce their perceived burden.
Review question: What may be the QoL and the type of burden experienced by informal caregivers of patients diagnosed with clinical OCD?

summarizes the PICO framework used to formulate the research question.

2.1. Selection Criteria

The studies were selected based on pre-decided inclusion and exclusion criteria. The inclusion criteria were the following:

• Studies that focus mainly on the QoL and/or perceived burden of informal caregivers of patients diagnosed with clinical OCD.
• Studies published from January 2010 to December 2024.
• Full-text articles in the English language.
• Studies that examine mainly “caregivers” of patients with OCD and not “relatives” who may or may not be caregivers.
• Caregivers are family members or relatives and may consequently be understood as informal caregivers (unpaid individuals, generally family members caring for patients with OCD in this context).

The exclusion criteria were the following:

• Research protocols.
• Narrative reviews.
• Unpublished data (theses and dissertations yet to be published).
• Articles in languages other than English.
• Studies on topics other than the QoL and burden perception of caregivers of patients with OCD.
• Studies comparing the QoL and burden perception or experience of caregivers of patients with OCD with those of caregivers of patients with any other mental illness.
• Studies examining formal caregivers of OCD or any other mental illness.

2.2. Search Strategy

The primary electronic databases searched were Science Direct, JSTOR, PubMed, PsycInfo, and Google Scholar. The following key terms and phrases were used:

• Caregivers of patients with OCD/Obsessive–Compulsive Disorder
• Obsessive–Compulsive Disorder/OCD and caregiving
• Quality of life/kind of life of caregivers of patients with OCD/Obsessive–Compulsive Disorder
• Burden perception of/Burden experienced by caregivers of patients with OCD/Obsessive–Compulsive Disorder
• Life of caregivers

2.3. Data Extraction

The data from the articles were extracted and tabulated in the following columns: Author and Date, Aims/Objectives, Sample Details, Instruments Administered, Findings, and Limitations. The details of the reviewed articles are given in Supplementary Table S1.

3. Results

Out of the 10 reviewed studies, 2 were from India, 2 from the United States, 1 from Brazil, 2 from Turkey, 1 from China, 1 from Pakistan, and 1 from Egypt. All the studies followed a quantitative approach. The mean age of caregivers was around 48 years, and the total number (n) of caregivers in the reviewed studies ranged from 50 to 120. Most of the studies included more female caregivers, who were mostly spouses/parents of the patient, followed by a parent as the caregiver. The 10 reviewed studies also included a small number of siblings/children who were reported as caregivers. Only one study reported a grandparent as the caregiver of the patient. The studies reviewed mainly administered to the caregivers the Burden Assessment Scale, Family Accommodation Scale for OCD, World Health Organization QoL Scale, and Family Burden Interview Schedule.

Four themes emerged through the analysis of the findings and discussions of the 10 reviewed articles: (a) caregiver support priorities, (b) illness trajectory and caregiver strain, (c) detrimental caregiver response, and (d) socioeconomic disparities and QoL. These themes were derived by focusing on overlapping findings that the authors deemed could form a larger theme.

3.1. Caregiver Support Priorities

This theme focuses on the caregiver needs that must be fulfilled to help caregivers better deal with their situation. Most studies focus on how caregivers would benefit if they were provided with the appropriate education and support (informational, social, and financial) [13,14,15]. They highlight how family accommodation can aggravate symptoms in the patient, which in turn can increase caregiver burden. Family accommodation is generally offered with good intentions, and although caregivers/relatives may participate in the patient’s ritualistic behavior with the aim of appeasing them, they may unknowingly and unintentionally contribute to the patient’s distress in the future. Thus, it is imperative to offer therapy to family members wherein caregivers are taught to support the patient instead of accommodating or antagonizing them (i.e., opposing the behavior and reprimanding the patient) [13,14,15]. The studies also revealed that many caregivers do experience some financial strain, and therefore, support in this aspect would be beneficial [15,16,17,18].

3.2. Illness Trajectory and Caregiver Strain

This theme focuses on the illness trajectory and the strain on caregivers. Seven of the ten reviewed studies indicated that if the illness becomes severe over time, the burden on the caregiver increases substantially while their QoL decreases. As illness duration and severity increase, hospitalization becomes a necessity, which increases caregiver burden because the patient becomes more dependent and also affects the leisure time and routine activities of caregivers [2,15,16,17,18,19,20].

Only one study by Siu et al. [13] specifically highlights the fact that illness duration is not related to caregiver burden. It also discusses a new type of adaptation that may develop among caregivers, where the illness of the relative becomes a part and parcel of caregivers’ lives as they learn to live with it.

3.3. Detrimental Caregiver Responses

This theme reflects the detrimental responses of caregivers in situations where caregivers may begin accommodating the patient with the aim of reducing their distress. This, in turn, exacerbates the patient’s symptoms and deteriorates the caregiver’s QoL [15,20].

For example, in a study where the patients were children or youth, caregivers struggled when they were asked to be accommodating [21]. Further, if the patient had comorbidities such as depression, the caregiver spent much time reassuring them and further increased their own burden.

Similarly, Lee et al. [14] observed that caregivers reported higher satisfaction in their relationship with the patient when they were more accommodating, as this was considered caring for and spending more time with the patient. Such situations could result in unhealthy relationship dynamics; thus, caregivers need to be taught how to support patients in a healthy manner.

In another study, caregivers had to quit their jobs to stay with the patient and often changed their lifestyle to accommodate patients’ needs [13]. One caregiver reported using a public bathroom because the bathroom at home was constantly occupied by the patient for their rituals. Thus, there may be situations where caregivers may not be assertive enough and tend to give in to the demands of the patient, which can be detrimental to the prognosis of OCD.

3.4. Socioeconomic Disparities and QoL

The fourth theme deals with the socioeconomic disparities and QoL of caregivers and was based on studies that foregrounded how the areas of living, socioeconomic status, and education may impact caregiver QoL. For example, caregivers belonging to middle and higher socioeconomic backgrounds, those who are better educated, and those living in urban areas are better able to cope with caregiving and have a better QoL. In contrast, caregivers from a rural area perceived themselves as having fewer resources and being more burdened [16,17,18,20].

People are empowered by having access to the appropriate resources. Thus, stakeholders must heed the importance of psychoeducation, therapy, and the provision to caregivers of essential resources such as medicines, financial subsidies, information, and social support. For example, male caregivers who had a more educated mother had a better QoL and experienced lower burden than did their counterparts [17]. This might have been so because the mother was in a better position to provide resources, consequently empowering the caregiver.

4. Discussion

All 10 reviewed studies were consistent in caregiver perceptions of burden in that almost all caregivers experienced burden as they cared for a patient diagnosed with OCD. The two studies from the Indian context shed light on the fact that burden was experienced through the disruption of family routine, fewer opportunities for family leisure time, and intrusion in family interactions, all of which are aspects that form the core of collectivistic Indian culture. Such situations would also decrease caregiver QoL.

Another striking aspect in a Turkish study [17] was that male caregivers had a better QoL compared to female caregivers. Further, male caregivers who were more educated, employed, and had a mother who was highly educated had a higher QoL compared to their counterparts. Having a well-educated mother could mean that the male caregivers had more resources and information about the illness. This was the first study to relate the mother’s education level to the caregiver’s QoL.

This study also demonstrated that caregivers of male patients with OCD had a lower psychological QoL, which may be attributed to Turkish society’s expectations for male roles wherein men must perform certain duties [17]. This makes one ponder the strict gender roles assigned within certain societies and cultures and how illness can force changes in these, causing distress.

Only two studies in the literature have attempted to examine the causality of QoL and burden perception, and both observed a negative correlation between QoL and burden perception [2,21]. That is, when the burden increases, the perceived QoL decreases [17].

Suculluoglu-Dikici et al. found that individuals in rural areas of Turkey experienced a higher burden compared to their urban counterparts [21]. This may be because the caregivers perceived themselves as belonging to a lower-income group and did not have adequate resources. This reaffirms the need for psychoeducation and support groups for caregivers of patients with OCD.

Rural communities face issues as they often lack resources; therefore, they need to be prioritized. In such communities, caregivers may often hide in the shadows of shame, embarrassment, loneliness, and doubt. Moreover, individuals in rural communities may feel insecure and experience a sense of helplessness [22]. Studies on caregivers of patients with schizophrenia show that caregivers in rural areas face considerable hardship and are mainly impacted by symptom severity and illness-related stigma. Thus, providing the appropriate type of social support is necessary [23].

In non-Western countries, family members are often the primary caregivers of patients with mental illness. In fact, 90% of patients with chronic mental illness in the Indian subcontinent live with their families. Family caregivers undertake many roles and often must deal with patients’ behavioral disturbances. Nevertheless, caregivers within families remain neglected by mental health professionals [24]. This underscores the importance of identifying caregiver needs at an early stage and providing caregivers with appropriate assistance through family interventions. To the best of our knowledge, there exists a lack of data to understand the type of burden and QoL among caregivers of patients with OCD. Hence, conducting research in this population is indispensable to making caregivers feel well supported.

The study by Suculluoglu-Dikici et al. [21] on the caregivers of youth and children with OCD was the only study in this review that found no correlation between symptom severity and caregiver QoL. The researchers state that this may be due to the families having become habituated to a new normal [21]. This study was conducted in the United States, and because children in the family were ill, the entire family may have tried to adjust and do their best to offer the child all they could. The findings showed that the social relations of caregivers were indeed hampered when the child/youth exhibited excessive dependency. Moreover, the researchers conjecture that symptom severity in the sample was linked to the caregivers being more accommodating [21].

This then brings us to the issue of psychoeducation—caregivers need to be instructed that accommodation often worsens symptoms. In the study by Suculluoglu-Dikici et al., the caregivers, being the parents of the child/youth, may have complicated the situation [21]. For example, a caregiver participant struggled to deny a request that their child had asked them to accommodate. Furthermore, QoL was linked to the level of caregiver anxiety: the more anxious the caregiver, the lower their QoL. If the youth/child had comorbidities such as depression or anxiety, the caregiver would be further burdened by needing to spend more time reassuring the child. Additionally, when the child or youth tended to externalize the symptoms, the parent’s burden increased.

Parents of children with illnesses face unique challenges. Providing them with the right type of information and support would help them feel understood and more equipped to deal with the situation. In the case of OCD, parents may naturally try to help their children when they find them anxious. This may lead to accommodating behaviors that can exacerbate symptoms.

In contrast, psychoeducation would empower parents or caregivers to guide and assist the patient without accommodating or antagonizing them. This aspect is emphasized in the study by Lee et al., where 68% of the caregivers were a parent of the patient [14]. The researchers noted that caregivers reported higher burden as patient symptoms became severe, but the care they provided increased relationship satisfaction. This suggests that caregivers should be taught to support in a healthy manner rather than engage in accommodation.

Furthermore, Lee et al. [14] found that accommodation was positively correlated to caregiver burden and that caregivers who were not accommodating experienced hardly any burden. That the caregivers’ relationship satisfaction was positively correlated to OCD severity may make one question the nature of the relationship. When caregivers report satisfaction, they may mean spending time with the patient and having similar goals; however, this may not be healthy.

Torres et al. noted that many caregivers felt “annoyed” and “irritated” with the patient, especially those who lived with the patient [19]. The caregivers in this study also often perceived the patient as “selfish” because they felt that the thoughts and thus the rituals were controllable if tried. Relatedly, witnessing the patient’s anxiety made the caregivers feel insecure and confused about whether to participate in the rituals. This often led to inconsistencies among the caregivers who sometimes participated in the patient’s rituals but sometimes refused to. Furthermore, caregivers experienced higher psychiatric morbidity when they felt that their day-to-day routine was being interfered with, and at times, they did experience a level of embarrassment, especially those with a higher education level [19].

In a study on caregivers of patients with bipolar disorder and schizophrenia, caregivers (other than the parents) generally had a negative attitude toward the mental illness and a high level of stigma [25]. Further, male caregivers with lower education levels were more burdened. This finding is contrary to that of Suculluoglu-Dikici et al. [17], who found that male caregivers of patients with OCD felt less burdened compared to their female counterparts.

Informal caregivers who care for patients with mental illnesses generally report higher subjective burden compared to caregivers of patients with somatic illnesses [26]. Although caregivers who care for patients with a mental illness, such as dementia or major physical illnesses, perceive a greater burden, some experience the positive aspects of caring and feel fulfilled and satisfied [27]. This emphasizes that mental health professionals must consider the experience of caregivers from all dimensions when trying to support and empower them, including the support available to them, coping strategies, the population they care for, and so on.

OCD is evaluated as a “devastating illness” that leaves no family member unaffected, and an increasing body of research demonstrates the detrimental impact on caregivers of patients with OCD [8,28,29,30]. Hence, it is crucial to understand the lived experiences of this population of caregivers and support them effectively.

5. Conclusions

Caregiving must be offered in a planned manner, and doing so can make the experience more fulfilling for the caregiver. However, it can lead to anger, frustration, and burnout [31]. Caring for an individual with OCD is quite different from caring for an individual with any other mental illness because OCD can affect family life and thereby caregivers’ lives [32].

Family accommodation can play a significant role in OCD and make members tend to acquiesce to patients’ rituals/demands to support their needs. It is associated with high levels of psychological distress, depression, and negative moods [33,34,35,36]. Researchers have suggested that practitioners evaluate the presence of family accommodation when planning treatments for patients with OCD [37,38], which would help both the patient and caregiver.

The needs of informal caregivers are often not given sufficient attention in part because these caregivers are often not known to mental health professionals [39]. Therefore, informal caregivers urgently require evidence-based interventions [40] that empower them with guidance from experts, which would consequently allow them to act effectively where patients are concerned and help reduce their own distress and burden.

In summary, the caregivers who participated in the reviewed studies seemed to possess little information on how to deal with patients with OCD. Conducting additional scoping reviews would help bridge the gap between practitioners, health professionals, and caregivers and promote healing and well-being. This is the strength of this scoping review, where attempts are made to focus on the needs of caregivers of patients with OCD.

6. Limitations and Future Implications

This study has an important limitation in that only 10 studies met the inclusion criteria for the review. The small sample size and the limited number of countries included do not allow the findings to be generalized. However, the findings strongly highlight the need for further research on the topic so that psychiatrists and psychologists can formulate guidelines and protocols to support caregivers.

The findings of this review indicate that focusing on research relating specifically to caregivers of patients with OCD may be beneficial for understanding their unique concerns and developing appropriate coping methods and interventions.