https://doi.org/10.35845/kmuj.2024.23519                            ORIGINAL ARTICLE

Emotional Burden and Psychological Distress in Caregivers of Patients with Obsessive Compulsive Disorder

Hafiz Shafique Ahmad  ¹ , Khizra Iqbal  ¹, Farah Rasheed ², Ali Waqas ³,

 Aleeza Javaid ⁴ , Rashida Rehana ¹

 

1: Department of Psychiatry and Behavioral Sciences, Nishtar Medical University, Multan, Pakistan 2: Department of Psychiatry, Bakhtawar Amin Hospital, Multan, Pakistan 3: Department of Psychology, The Islamia University, Bahawalpur, Pakistan 4: Department of Psychology, Women University, Multan, Pakistan   Email  : drhshafiq@ymail.com Contact #: +92-333- 6370824   Date Submitted: October 19, 2023 Date Revised: September 04, 2024 Date Accepted: September 20, 2024

THIS ARTICLE MAY BE CITED AS: Ahmad HS, Iqbal K, Rasheed F, Waqas A, Javaid A, Rehana R. Emotional burden and psychological distress in caregivers of patients with obsessive compulsive disorder. Khyber Med Univ J 2024;16(4):308-13. https://doi.org/10.35845/kmuj.2024.23519

ABSTRACT

Objectives: To seek the association and prevalence of emotional burden of caregivers of OCD patients with their emotional states of anxiety, depression and stress.  

Methods: Descriptive study design was used. Present study was established in indoor and outdoor of Department of Psychiatry, Nishtar Medical University and hospital, Multan, Districts Head Quarters Hospital Khanewal and  D.G Khan Teaching Hospital from June, 2022 to November, 2022. Participants were 220 caregivers of OCD patients (Male=89, Female=131) approached through consecutive sampling technique. The Zarit Burden Interview (ZBI), and Depression anxiety stress scale (DASS) was utilize on participants along with demographics variable sheet.  The data was analyzed using descriptive and inferential statistics by using SPSS-22.

Results: Pearson correlation showed significant positive association between emotional burden and three emotional states comprising of stress, anxiety and depression in caregivers of OCD patients. Descriptive statistics showed emotional burden was severe in (74.5%) caregivers of OCD patients. Emotional states was measured on three subscales with the following findings as level of stress was on mild level (48.1%), anxiety was severe (55.9%) in most of the caregivers and frequency of depression was on moderate (57.7%) level in Caregivers of OCD.  Findings showed female caregivers perceived more burden as compared to male caregivers. Therefore, level of stress was also higher in female caregivers as compared to male caregivers.

Conclusion: It was concluded that psychiatric disorders, particularly OCD, impose a significant burden on caregivers, leading to psychological distress, including stress, anxiety, and depressive symptoms.

Keywords: Obsessive-Compulsive Disorder (MeSH); Caregiver Burden (MeSH); Depression (MeSH); Anxiety (MeSH); Stress (MeSH); Stress Disorder (MeSH).

INTRODUCTION

Mental illness can have a significant impact on family dynamics and relationships. Family members may experience increased level of stress, anxiety and depression as they try to cope with and support their loved ones with mental illness. Specifically, severity in obsessive compulsive symptoms is directly associated with family distress.¹ Therefore family members experienced feelings of hopeless and helplessness, frustration, anger, guilt, fatigue and other associated symptoms. Mental illness leads significant impact on both patients and family members.² Caregiver burden is a multifaceted concept, as individuals can experience both objective and subjective types of burden.³ The manner in which the family members of OCD patients facilitate, reassure and modify their routine and activities due to patient’s obsessions and compulsions which may cause burden and psychological distress in family members. Caregiver burden has been largely overlooked by clinicians and in interventions. Informal caregivers have been called “the invisible patient” as they are often forgotten; physicians and clinicians may neglect to ask caregivers about their own mental and physical well-being throughout the disease course of the respective partner.⁴

Families of OCD patients face a lot of burden due to less social and financial. Caregiver of OCD patient might experience the emotional burden which causes anxiety, stress and depression. Caregivers of patients often experience symptoms of depression, such as persistent sadness, loss of interest, feeling of hopelessness and changes in appetite or sleep patterns. Due to uncertainty and responsibility caregivers also experienced anxiety. They may worry about wellbeing of the person they care for. Anxiety symptoms can include restlessness, irritability, difficulty concentrating and physical symptoms. Caregiving is stressful, as it involves managing complex medical needs, coordinating appointments, administering medication and providing emotional support. Stress is defined by overwhelmed, fatigued and over thinking.⁵

Numerous studies have been conducted to evaluate the emotional burden in family members of the patients with OCD. It was estimated that emotional burden in caregivers were similar or even greater than affective and schizophrenic disoders.^6,7 Caregivers of individuals with psychiatric disorder such as obsessive compulsive disorder experience significant emotional burden and psychological distress due to demands and challenges associated with caregiving. Inadequate sources and lack of trainings to deal with such situations can worsening in the condition of patient.⁸ In earlier study, moderate level of emotional burden was assessed which was associated with the severity of disorder among family members of patient with OCD.^9,10

Existing literature has explored various aspects of caregiver burden in the context of chronic physical illnesses¹¹ and some psychiatric conditions, but there is a notable gap in research specifically addressing the experiences of caregivers for patients with OCD.¹² This gap is particularly concerning given that caregivers are often deeply affected by the demands of caring for a loved one with OCD, experiencing high levels of stress, anxiety, and depression.¹³

Caregivers of individuals with obsessive compulsive disorder often experience significant emotional burden and distress due to demands and challenges associated with caregiving. Current study was conducted to explore the relationship and intensity of emotional burden and psychological distress in caregivers of OCD patients. Although there are limited studies on the unique experience of the caregivers in Pakistani perspective. Therefore, this study is intended to assess how family members of OCD patients experience caregiver burden and distress such anxiety, stress, and depression. Present study conducted on caregivers of OCD patients is essential for understanding the broader context of OCD treatment and providing caregivers with the support they need to fulfil their critical role in the care and recovery of their loved ones. This research will helpful in leading to better outcomes for both the person with OCD and their caregivers.

Objective of the study

1.   To assess the relationship of emotional burden and emotional states of anxiety, depression and stress in caregivers of OCD patients

2.    To assess the prevalence and intensity of emotional burden and emotional states of anxiety, depression and stress in caregivers of OCD patients

METHODS

The present study was held in Department of Psychiatry and Behavioral Sciences, Nishtar Medical University and hospital Multan, District Headquarter Hospital Khanewal and Teaching Hospital D.G khan. Ethical approval letter was obtained from the Institutional Review board of the University, Order no: 1166 dated: 22-7-2022. Patients and caregivers were approached from in-patient and outpatient treatment services. Time period of the study was from July to December, 2022. Caregivers of OCD patients (N=220) were selected through consecutive sampling method in the study, (Males=89, Females=131) with age range of 18-60 years. Inclusion criteria: Patients included in the study had to meet the diagnostic criteria for Obsessive-Compulsive Disorder (OCD) as outlined in the DSM-5.Caregivers were selected based on the indication by the OCD patients, identifying family members actively involved in their care. Caregivers must have been involved in the care of the OCD patient for a minimum of one year. Caregivers participating in the study were required to have the ability to understand the content of the questionnaires. Exclusion criteria: Patients with psychiatric disorders comorbid with OCD were excluded from the study. Patients who did not meet the inclusion criteria were excluded. Patients who attended the study without a caregiver were also excluded

Present study based on descriptive research design. Consecutive sampling technique was used to collect data. Informed consent were taken from the participant prior to the study. All information and raw data were recorded on booklet consisted of sociodemographic sheet, The Zarit Burden Interview ¹⁴ and Depression Anxiety Stress Scale.¹⁵ If required then assistance was provided to complete the Performa. Confidentiality and patient clinical care was ensured to the participants.

For analysis descriptive and inferential statistics both were applied by using SPSS-21 to obtain frequency and percentage. Person correlation was used to determine the association between variables. Independent sample test was used to assess gender differences. 0.05 was selected as Alpha level of significance.

RESULTS

Table I of Sociodemographic profile showed the caregivers of OCD patients is shown in Table 1. Frequency of male caregivers was 40.4% and frequency of female caregivers was 59.5%. Male caregivers having age group 18 to 40 years were 70.4% and female caregivers having age group from 31 to 55 years were 29.5%. Findings of the family system of caregivers showed 74.5% belonged to nuclear family system and 25.4% caregivers’ belonged to joint family system In this study 68.1% percent of participants were from urban areas, 31.8% were from rural areas. Demographics findings of our study also explored that most of the participants were belonged to low socioeconomic status.

Table I: Demographic characteristics of the participants (n=220)

 

Table II of Correlation matrix showed that caregiver burden showed no association with stress, but exhibits positive association with anxiety and depression p<0.05.

 

Table II: Correlation matrix of emotional burden and psychological distress among caregivers of OCD patients (n=220)

Variables	Caregiver Burden	Stress	Anxiety	Depression
Caregiver Burden	--	.048	.380**	.340*
Stress		--	.773**	.560**
Anxiety			--	.807**
Depression				--

Note: P<0.05*, P<0.01**

 

Table III showed that frequency of Mother Caregiver 127(57.7%) was more as compared to other relationships of patients with OCD.

 

Table III: Caregivers of OCD Patients (n=220)

Table IV showed frequency of care duration was also important as more affected duration of illness was more than 5 years or more 125(56.8%)

 

Table IV: Duration of care for OCD Patients (n=220)

 

Table V showed level of emotional burden in caregivers was mild in 4.0% moderate in 21.3% and severe 74.5% in caregivers of OCD patients.

 

Table V: Intensity of emotional burden of caregivers of OCD (n=220)

Severity Level	Caregiver Burden
	Frequency (n=220)	Percentage
No or Minimal Burden	--	--
Mild	9	4.09
Moderate	47	21.36
Severe Burden	164	74.54

 

Table VI showed mild stress was found in 48.1%, moderate in 44.5% and severe in 7.2% of caregivers, similarly anxiety was mild in 5%, moderate in 18.1%, severe in 55.9% and was extreme in 20.9% caregivers of OCD patients. Same as depression was found mild in 11.36%, moderate in 57.7% and severe in 30.9% of caregivers of OCD patients.

 

Table VI: Intensity of psychological distress among caregivers of OCD (n=220)

The Table VII shows the middle most value median and interquartile range for difference in scores of males and females. It indicates that there was difference on emotional burden among male and females caregivers of OCD patients. Female caregivers showed more burden as compared to males and median score indicates that male caregivers are more prone to psychological distress. The Interquartile Range (IQR) is represented with the lower quartile (LQR) first and the upper quartile (UQR) second for each variable and gender group.

 

Table VII: Median and interquartile ranges for comparison on gender of caregiver burden and psychological distress (n= 220)

Variables	Median (LQR-UQR=IQR)	Median (LQR-UQR=IQR)
	Male	Female
Caregiver Burden	73 (63-82=13)	73.50 (64-82=9)
Stress	12 (12-14=3)	12 (12-14=2)
Anxiety	11 (9-15=6)	10 (9-15=1)
Depression	13 (11-14=3)	12 (11-14=6)

Note. N=number of caregivers; Mdn= median, LQR=Lower Quartile, UQR= Upper Quartile, IQR=interquartile range

 

DISCUSSION

In this study, we aimed to evaluate the factors affecting the mental health in caregivers of patients with OCD.  Sociodemographic profile of the caregivers of OCD patients is shown in Table 1. Frequency of male caregivers was 40.4% and frequency of female caregivers was 59.5%. Demographics findings of our study are consistent with another study⁸, in which 31% were male caregivers of OCD patients and female caregivers were 69%. Caregivers having age group 18 to 40 years were 70.4% and caregivers having age group from 31 to 55 years were 29.5%. A research¹⁶ showed similar demographics findings that around 48% caregivers of OCD patients were young and there age ranged from 18 to 45. Family caregivers were 44% with age range of 40 years and above and 69% of the them were females. Findings of the family system of caregivers showed most of the participants were belonged to nuclear family system.  In the same way a study¹⁷ also showed that 75% OCD patients and caregivers belonged to the nuclear family system and remaining 25% were from joint family system.  In this study most of the participants were from urban areas than rural areas. Our demographic findings are also in accordance with another findings¹⁴ that caregivers living in urban areas were 57% and 40% caregivers were living in rural areas.

Demographics findings of our study also explored that low to middle socioeconomic status, were high in percentage. Likewise findings of another study¹⁸ also reported that 70% of the caregivers were employed in a paid job and were of middle socioeconomic status.

 

Table II of Correlation matrix showed that caregiver burden is positively associated with emotional states of stress, anxiety and depression. A previous research showed consistency with our findings that caregiver of OCD patients experienced the emotional burden with severity of Psychological distress such as anxiety, depression and stress.¹⁹ Moreover another study showed a highly significant positive relationship between obsessive compulsive disorder in patients and its association with caregiver burden and psychological distress.²⁰

 

Table III showed that frequency of mother caregivers was high as compared to other relations of OCD patients. As previous studies also supported our findings that half of the caregivers (50%) were parents, (46.8%) of them were spouse in the caregiver group, whereas siblings and others represented almost a quarter (22%).²¹ Moreover, another research had also revealed the same findings as percentage of  female caregivers was more (69%) as compared to male caregivers (31%)  of OCD patients.²²

Table IV showed most of the caregivers were providing care to their OCD patient for last 5 years of illness onset. In the same way a previous study also revealed that the longer care duration of OCD illness predicts depression and burden in the caregiver.²³ Another research findings showed consistency with our findings that caregivers (45.1%) were having duration of caring experience for 5 to 9 years^20.  In addition to current findings a study showed longer course of OCD and poorer patient insight into OCD symptomology are also predictive of heightened caregiver burden.⁷

Table V showed the intensity of caregiving amongst the caregivers 82% showed severe burden while only 18% exhibited moderate level of emotional burden. In a similar vein found that (40%) of caregivers in the current study reported a high burden level.²⁴

 

Table VI showed that amongst the caregiver mild stress was reported high as compared to moderate and severe stress percentage. As subscale anxiety is concerned in caregivers, and similarly in depression subscale showed moderate level of severity of caregivers. In another study similar findings were observed where level of stress was 46.9%, while anxiety was 36.3%, and depression was 9.4%.²⁵

The Table VII shows that there was significance difference on emotional burden among females (75.4±8.38) and male (69.6±12.5) p<0.05, caregivers of OCD patients. There was also significant difference on stress, level of stress was found to be more in female caregivers (12.3±3.50) as compared to male caregivers (11.9±3.40) p<0.05. Another study was aligned with our results concluding that female caregivers had a higher risk of developing depressive symptoms.²⁶

CONCLUSION

In conclusion, our findings suggest that multiple factors contribute to the emotional burden and psychological distress among caregivers of OCD patients. Existence of OCD patients in family was positively correlated with emotional burden and psychological distress in caregivers. Severe level of emotional burden was prevailing among caregivers of OCD. Stress was mild, anxiety was severe in caregivers as well as moderate level of depression was found in caregivers of OCD patients. While considering higher number of mothers as caregivers of OCD patients in the family, they required greater assistance to resolve psychological issues. These findings highlight the urgent need for mental health services to integrate caregiver support into the treatment plans for OCD patients. By providing comprehensive assistance to caregivers, particularly those who are mothers, healthcare systems can enhance the overall well-being of both patients and their families, potentially improving treatment outcomes for OCD.

Limitations of the study and future recommendations

There are a few limitations that we must acknowledge in this study. Study was focused to one psychiatric illness. Some patients came with secondary caregivers rather than primary it creates somehow barriers to assess actual caregiver burden and distress. Study should be extend to other mental disorders in future research. Some other factors such as Social and psychological features of worse mental health outcomes in caregivers should also be explored.

Future studies may focus on the increase awareness in family members of OCD patients. There is huge need to be taught about how to deal emotional burden and distress by using coping strategies and stress management methods. To manage caregiver burden and to reduce stress, family support system should be strong. In Pakistan, family is a main supporting source for the patients with physical and mental illness. Training and assistance must be provided to such family to alleviate their emotional burden and distress. Hospital facilitate in from of free or less cost medicines to the patients so that financial burden may decrease on families of the patients. Encouragement of such caregivers will helpful in reducing the negatives consequences of the handling patients with mental illness from a long period of time as well as their quality of life will also be better. Future research should explore targeted interventions designed to alleviate the psychological distress experienced by caregivers, with a focus on personalized support programs for caregivers. Longitudinal studies are also needed to assess the long-term impact of caregiving on mental health and to identify effective strategies for reducing the emotional burden over time.

REFERENCES

1.  Tanir Y, Karayagmurlu A, Kaya, A, Kaynar, TB, Dambasan BN, et al. Exacerbation of obsessive compulsive disorder symptoms in children and adolescents during COVID-19 pandemic. Psychiatr Res 2020;293:113363. https://doi.org/10.1016/j.psychres.2020.113363

2.  Caqueo-Urízar A, Maldonado JG, Miranda-Castillo C. Quality of life in caregivers of patients with schizophrenia: A literature review. Health Qual Life Outcomes 2009;7:84. https://doi.org/10.1186/1477-7525-7-84

3.   Ohaeri JU. The burden of caregiving in families with a mental illness: A review of 2002. Curr Opin Psychiatr 2003;16(4):457-65.  https://doi.org/10.1097/01.yco.0000079212.36371.c0

4.  Torres AR, Lima MCP. Epidemiologia do transtorno obsessivo-compulsivo: uma revisão. Rev Bras Psiquiatr 2005;27(3):237-42. https://doi.org/10.1590/S1516-44462005000300015

5.  Vikas A, Avasthi A, Sharan P. Psychosocial impact of obsessive-compulsive disorder on patients and their caregivers: A comparative study with depressive disorder. Int J Soc Psychiatry 2011;57(1):45-56. https://doi.org/10.1177/0020764009347333

6.  Soares-Neto EBS, Teles JBM, Rosa LCS. Sobrecarga em familiares de indivíduos com transtorno obsessive compulsive. Rev Psiquiatr Clín 2011;38(2):47-52. https://doi.org/10.1590/S0101-60832011000200001

7.   Seng BK, Luo N, Ng WY, Lim J, Chionh HL, Goh J, et al. Validity and reliability of the Zarit Burden Interview in assessing caregiving burden. Ann Acad Med Singap 2010;39(10):758-63.

8.   Flynn-Longmire CV, Knight BG. Confirmatory factor analysis of a brief version of the Zarit Burden Interview in black and white dementia caregivers. Gerontology 2011;51(4):453-62. https://doi.org/10.1093/geront/gnr011

9.  Cicek E, Cicek IE, Kayhan F, Uguz F, Kaya N. Quality of life, family burden and associated factors in relatives with obsessive-compulsive disorder. Gen Hosp Psychiatr 2013;35(3):253-8. https://doi.org/10.1016/j.genhosppsych.2013.01.004

10. Grover S, Dutt A. Perceived burden and quality of life of caregivers in obsessive-compulsive disorder. Psychiatr Clin Neurosci 2011;65(5):416-22. https://doi.org/10.1111/j.1440-1819.2011.02240.x

11. Coles ME, Frost RO, Heimberg RG, Steketee G. Hoarding behaviors in obsessive-compulsive disorder and the problems of treating compulsive hoarding: A review. J Anxiety Disord 2020;24(2):450-60.

12. Steketee G, Van Noppen B. Family approaches to treatment for obsessive-compulsive disorder. J Fam Psychol 2021;17(2):278-91.

13.Ramos-Cerqueira ATA, Torres AR, Torresan RC, Negreiros APM, Vitorino CNV. Emotional burden in caregivers of patients with obsessive-compulsive disorder. Depress Anxiety 2008;25(12):1020-7. https://doi.org/10.1002/da.20431

14. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist (1980) 20(6), 649–655. https://doi.org/10.1093/geront/20.6.649

15. Jiang LC, Yan YJ, Jin SZ, Hu LM, Wang L, Song Y, et al. The Depression Anxiety Stress Scale-21 in Chinese Hospital Workers: Reliability, Latent Structure, and Measurement Invariance across Genders. Front Psychol 2020;11:247 https://doi.org/10.3389/fpsyg.2020.00247

16. Zaheer M, Kausar R, Farooq A. Family Accommodation, Caregiver Burden and Psychological Distress in Family Members of Patients with Obsessive Compulsive Disorder. ASEAN J Psychiatr 2021;22(9):1-9.

17.  Lane NE, Hoben M, Amuah JE, Hogan DB, Baumbusch J, Gruneir A, et al. Prevalence and   correlates of anxiety and depression in caregivers to assisted living residents during COVID-19: a cross-sectional study. BMC Geriatr 2022;22:662. https://doi.org/10.1186/s12877-022-03294-y

18. Slamon AE, Al-Moteri M, Plummer V, Alkarani SA, Ahmed GM. Coping Strategies and Burden Dimensions of Family Caregivers for People Diagnosed with Obsessive-Compulsive Disorder. Healthcare 2022;10(3):451. https://doi.org/10.3390/healthcare10030451

19. Grover S, Dutt A. Perceived burden and quality of life of caregivers in obsessive–compulsive disorder. Psychiatry Clin Neurosci 2011;65(5):416-22. https://doi.org/10.1111/j.1440-1819.2011.02240.x

20. Vikas A, Avasthi A, Sharan P. Psychological impact of obsessive compulsive disorder on patients and their caregivers: a comparative study with depressive disorder. Int J Soc Psychiatr 2009;57(1):45-56. https://doi.org/10.1177/0020764009347333

21. Cerqueira AA, Torres RA, Torresan CR, Negreiros MPA, Vitorino NC. Emotional burden in caregivers of patients with obsessive-compulsive disorder. J Depress Anxiety 2008;25(12):1020-7. https://doi.org/10.1002/da.20431

22. Del-Pino-Casado R, Priego-Cubero E, López-Martínez C, Orgeta V. Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis. PLoS One 2021;16(3). https://doi.org/10.1371/journal.pone.0247143

23. Sharif L, Basri S, Alsahafi F, Altaylouni M, Albugumi S, Banakhar M, et al. An Exploration of Family Caregiver Experiences of Burden and Coping While Caring for People with Mental Disorders in Saudi Arabia-A Qualitative Study. Int J Environ Res Public Health 2020;17(17):6405. https://doi.org/10.3390/ijerph17176405.

24. Suculluoglu-Dikici D, Cokmus FP, Akin F, Eser E, Demet MM. Disease burden and associated factors in caregivers of patients with obsessive-compulsive disorder. Dusunen Adam J Psy Neuro Sci 2020;33:421-8. https://doi.org/10.14744/DAJPNS.2020.00110.

25. Marwale AV, Quadri SA, Quadri AA. Prevalance of disability and family burden in patients with obsessive compulsive disorder: an observational study. MGM J Med Sci 2017;4:155-9. https://doi.org/10.5005/jp-journals-10036-1162

26. Souza AL, Guimarães RA, de Araújo Vilela D, de Assis RM, Oliveira LM, Souza MR, et al. Factors associated with the burden of family caregivers of patients with mental disorders: A cross-sectional study. BMC Psychiatr 2017;17:1-10. https://doi.org/10.1186/s12888-017-1501-1

AUTHORS' CONTRIBUTIONS Following authors have made substantial contributions to the manuscript as under: HAS, KI & RR: Conception and study design, acquisition of data, drafting the manuscript, approval of the final version to be published FR & AW: Analysis and interpretation of data, critical review, approval of the final version to be published AJ: Study design, acquisition of data, critical review, approval of the final version to be published   Authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

 

CONFLICT OF INTEREST Authors declared no conflict of interest, whether financial or otherwise, that could influence the integrity, objectivity, or validity of their research work.   GRANT SUPPORT AND FINANCIAL DISCLOSURE Authors declared no specific grant for this research from any funding agency in the public, commercial or non-profit sectors

 

DATA SHARING STATEMENT The data that support the findings of this study are available from the corresponding author upon reasonable request

 

This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 International License.

 

KMUJ web address: www.kmuj.kmu.edu.pk Email address: kmuj@kmu.edu.pk