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Caregiving in Obsessive Compulsive Disorder: A study from North India

Abstract

This study aimed to evaluate the positive aspects of caregiving in caregivers of patients with obsessive compulsive disorder (OCD) in a general hospital setting. Additionally, the study aimed to evaluate the association of positive aspects of caregiving with social support, coping and, quality of life of caregivers. 100 primary caregivers of patients with OCD were assessed on Scale for Positive Aspects of Caregiving Experience (SPACE), Duke–UNC Functional Social Support Questionnaire (FSSQ), Coping Check List, PGI Health Questionnaire–N2 version, Revised Family Accommodation Scale (FAS) General Health Questionnaire-12 (GHQ-12), World Health Organization Quality of life (WHOQOL)- Bref version. On SPACE, the maximum score was obtained for the domain of motivation for the caregiving role (2.56), followed by the domains of caregiving personal gains (2.11) and caregiver satisfaction (2.11) and least score was obtained for the domain of self-esteem and social aspects of caring (1.62). Higher positive caregiving experience was associated with lower amount of time spent per day in caregiving, being in caregiver role for shorter duration, having other family members to support in caregiving, better social support, lower level of neuroticism, higher use of adaptive copings such as problem focused and seeking social support, higher use of collusion as coping, lower level of accommodation and better quality of life. To conclude, the present study suggests positive caregiving experiences of caregivers of patients with OCD is significantly influenced by the time spent per day in caregiving, duration of being in the caregiver role and higher use of adaptive coping mechanisms like problem solving and seeking social support.

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References

  1. 1.

    Abdollahpour I, Nedjat S, Salimi Y. Positive aspects of caregiving and caregiver burden: a study of caregivers of patients with dementia. J Geriatr Psychiatry Neurol. 2018;31(1):34–8.

    PubMed  Article  PubMed Central  Google Scholar 

  2. 2.

    Aggarwal M, Avasthi A, Kumar S, Grover S. Experience of caregiving in schizophrenia: a study from India. Int J Soc Psychiatry. 2011;57:224–36.

    PubMed  Article  PubMed Central  Google Scholar 

  3. 3.

    Albert U, Salvi V, Saracco P, Bogetto F, Maina G. Health-related quality of life among first-degree relatives of patients with obsessive-compulsive disorder in Italy. Psychiatr Serv. 2007;58:970–6.

    PubMed  Article  PubMed Central  Google Scholar 

  4. 4.

    Albert U, Maina G, Bogetto F, Chiarle A, Mataix-Cols D. Clinical predictors of health-related quality of life in obsessive-compulsive disorder. Compr Psychiatry. 2010;51:193–200.

    PubMed  Article  PubMed Central  Google Scholar 

  5. 5.

    American Psychiatric Association (2000) Global assessment of functioning scale. Diagnostic and statistical manual of mental disorders, 4th edition, text revision Washington, DC: APA, p. 34.

  6. 6.

    Bacon E, Milne DL, Sheikh AI, Freeston MH. Positive experiences in caregivers: an exploratory case series. Behav Cogn Psychother. 2009;37:95–114.

    PubMed  Article  PubMed Central  Google Scholar 

  7. 7.

    Barrett P, Farrell L, Dadds M, Boulter N. Cognitive-behavioral family treatment of childhood obsessive-compulsive disorder: long-term follow-up and predictors of outcome. J Am Acad Child Adolesc Psychiatry. 2005;44:1005–14.

    PubMed  Article  PubMed Central  Google Scholar 

  8. 8.

    Black DW, Gaffney G, Schlosser S, Gabel J. The impact of obsessive compulsive disorder on family: preliminary findings. J Nerve Ment Dis. 1998;186(7):440–2.

    Article  Google Scholar 

  9. 9.

    Broadhead WE, Gehlbach SH, DeGruy FV, Kaplan BH. The duke-UNC functional social support questionnaire: measurement of social support in family medicine patients. Med Care. 1988;26:709–23.

    PubMed  Article  PubMed Central  Google Scholar 

  10. 10.

    Calvocoressi L, Mazure CM, Kasl SV, Skolnick J, Fisk D, Vegso SJ, Van Noppen BL, Price LH. Family accommodation of obsessive-compulsive symptoms: instrument development and assessment of family behaviour. J Nerv Ment Dis. 1999;187(10):636–42.

    PubMed  Article  PubMed Central  Google Scholar 

  11. 11.

    Chakrabarti S (2010) Impact of schizophrenia on caregivers: the Indian perspective. In: Schizophrenia: The Indian scene. Eds (2nd): Kulhara P, Avasthi A, Grover S. Published by; PsyPROM, PGIMER, Chandika Press, Barwala, Haryana, pp. 215–262.

  12. 12.

    Chakrabarti S, Kulhara P, Verma SK. Pattern of burden in families of neurotic patients. Soc Psychiatry Psychiatr Epidemiol. 1993;28(4):172–7.

    PubMed  Article  PubMed Central  Google Scholar 

  13. 13.

    Chen F, Greenberg JS. A positive aspect of caregiving: The influence of social support on caregiving gains for family members of relatives with schizophrenia. Community Ment Health J. 2004;40:423–35.

    PubMed  Article  PubMed Central  Google Scholar 

  14. 14.

    Cherian AV, Pandian D, Bada Math S, Janardhan Reddy YC (2014) Family accommodation of obsessional symptoms and naturalistic outcome of obsessive-compulsive disorder. Psychiatry Res 215: 372–378.

  15. 15.

    Cooper M. Report on the findings of study of OCD family members. OCD Newslett. 1994;8:1–2.

    Google Scholar 

  16. 16.

    Cooper M. Obsessive–compulsive disorder: effects on family members. Am J Orthopsychiatry. 1996;66:296–304.

    PubMed  Article  PubMed Central  Google Scholar 

  17. 17.

    Diefenbach GJ, Abramowitz JS, Norberg MM, Tolin DF. Changes in quality of life following cognitive-behavioral therapy for obsessive-compulsive disorder. Behav Res Ther. 2007;45:3060–8.

    PubMed  Article  PubMed Central  Google Scholar 

  18. 18.

    Fauziana R, Sambasivam R, Vaingankar JA, Abdin E, Ong HL, Tan ME, Chong SA, Subramaniam M. Positive caregiving characteristics as a mediator of caregiving burden and satisfaction with life in caregivers of older adults. J Geriatr Psychiatry Neurol. 2018;31(6):329–35.

    PubMed  PubMed Central  Article  Google Scholar 

  19. 19.

    Fontenelle IS, Fontenelle LS, Borges MC, Prazeres AM, Rangé BP, Mendlowicz MV, Versiani M. Quality of life and symptom dimensions of patients with obsessive-compulsive disorder. Psychiatry Res. 2010;179(2):198–203.

    PubMed  Article  PubMed Central  Google Scholar 

  20. 20.

    Gautam S, Nijhawan M, Kamal P. Standardization of Hindi version of goldberg’s general health questionnaire. Indian J Psychiatry. 1987;29:63–6.

    PubMed  PubMed Central  Google Scholar 

  21. 21.

    Goldberg DP (1972) The detection of psychiatric illness by questionnaire. Maudsley Monograph No. 21, Oxford, Oxford University Press.

  22. 22.

    Goodman WK, Price LH, Rasmussen SA, Mazure C, Delgado P, Heninger GR, Charney DS (1989) The yale-brown obsessive compulsive scale. Arch Gen Psychiatry 46(11): 1006–1011.

  23. 23.

    Grover S, Dutt A. Perceived burden and quality of life of caregivers in obsessive-compulsive disorder. Psychiatry Clin Neurosci. 2011;65:416–22.

    PubMed  Article  PubMed Central  Google Scholar 

  24. 24.

    Grover S, Kate N, Chakrabarty S, Avasthi A. Positive aspects of caregiving and its correlates among caregivers of bipolar affective disorder. East Asian Arch Psychiatry. 2017;27:131–41.

    PubMed  PubMed Central  Google Scholar 

  25. 25.

    Harvey K, Burns T, Fahey T, Manley C, Tattan T. Relatives of patients with severe psychotic illness: factors that influence appraisal of caregiving and psychological distress. Soc Psychiatry Psychiatr Epidemiol. 2001;36:456–61.

    PubMed  Article  PubMed Central  Google Scholar 

  26. 26.

    Hollander E. Obsessive compulsive disorder: the hidden epidemic. J Clin Psychiatry. 1997;58:3–6.

    PubMed  Article  PubMed Central  Google Scholar 

  27. 27.

    Horwitz AV, Reinhard SC, Howell-White S. Caregiving as reciprocal exchange in families with seriously mentally ill members. J Health Soc Behav. 1996;37:149–62.

    PubMed  Article  PubMed Central  Google Scholar 

  28. 28.

    Jayakumar C, Jagadheesan K, Verma AN. Caregiver’s burden: a comparison between obsessive-compulsive disorder and schizophrenia. Indian J Psychiatry. 2002;44:337–42.

    PubMed  PubMed Central  Google Scholar 

  29. 29.

    Kalra H, Nischal A, Trivedi JK, Dalal PK, Sinha PK. Extent and determinants of burden of care in Indian families: a comparison between obsessive-compulsive disorder and schizophrenia. Int J Soc Psychiatry. 2009;55:28–38.

    PubMed  Article  PubMed Central  Google Scholar 

  30. 30.

    Karno M, Golding JM, Sorenson SB, Burnam MA. The epidemiology of obsessive-compulsive disorder in five US communities. Arch Gen Psychiatry. 1988;45:1094–9.

    PubMed  Article  Google Scholar 

  31. 31.

    Kate N, Grover S, Kulhara P, Nehra R. Positive aspects of caregiving and its correlates in caregivers of schizophrenia: a study from north India. East Asian Arch Psychiatry. 2013;23:45–55.

    PubMed  Google Scholar 

  32. 32.

    Laidlaw TM, Falloon IR, Barnfather D, Coverdale JH. The stress of caring for people with obsessive compulsive disorders. Community Ment Health J. 1999;35:443–50.

    PubMed  Article  Google Scholar 

  33. 33.

    Lau DYK, Pang AHT. Caregiving experience for Chinese caregivers of persons suffering from severe mental disorders. Hong Kong J Psychiatry. 2007;17:75–80.

    Google Scholar 

  34. 34.

    Lawton MP, Moss M, Kleban MH, Gliskman A, Rovine M. A two-factor model of caregiving appraisal and psychological well-being. J Gerontol. 1991;46:181–9.

    Article  Google Scholar 

  35. 35.

    Lebowitz ER, Panza KE, Su J, Bloch MH. Family accommodation in obsessive-compulsive disorder. Expert Rev Neurother. 2012;12:229–38.

    PubMed  PubMed Central  Article  Google Scholar 

  36. 36.

    Lee E, Steinberg D, Phillips L, Hart J, Smith A, Wetterneck C. Examining the effects of accommodation and caregiver burden on relationship satisfaction in caregivers of individuals with OCD.Bull. Menn Clin. 2015;79:1–13.

    Google Scholar 

  37. 37.

    Li Q, Loke AY. The positive aspects of caregiving for cancer patients: a critical review of the literature and directions for future research. Psychooncology. 2013;22:2399–407.

    PubMed  Article  Google Scholar 

  38. 38.

    Lochner C, Mogotsi M, duToit PL, Kaminer D, Niehaus DJ, Stein DJ. Quality of life in anxiety disorders: a comparison of obsessive-compulsive disorder, social anxiety disorder, and panic disorder. Psychopathology. 2003;36:255–62.

    PubMed  Article  Google Scholar 

  39. 39.

    Lopez J, Lopez-Arrieta J, Crespo M. Factors associated with the positive impact of caring for elderly and dependent relatives. Arch Gerontol Geriatr. 2005;41:81–94.

    PubMed  Article  Google Scholar 

  40. 40.

    Mackenzie A, Greenwood N. Positive experiences of caregiving in stroke: a systematic review. Disabil Rehabil. 2012;34:1413–22.

    PubMed  Article  PubMed Central  Google Scholar 

  41. 41.

    Mangliano L, Tosini P, Guarneri M, Marasco C, Catapano F. Burden on the families of patients with obsessive-compulsive disorder: a pilot study. Eur Psychiatry. 1996;11:192–7.

    Article  Google Scholar 

  42. 42.

    Martens L, Addington J. The psychological well-being of family members of individuals with schizophrenia. Soc Psychiatry Psychiatr Epidemiol. 2001;36:128–33.

    PubMed  Article  PubMed Central  Google Scholar 

  43. 43.

    Merlo LJ, Lehmkuhl HD, Geffken GR, Storch EA. Decreased family accommodation associated with improved therapy outcome in pediatric obsessive-compulsive disorder. J Consult Clin Psychol. 2009;77:355–60.

    PubMed  PubMed Central  Article  Google Scholar 

  44. 44.

    Mo FYM, Chung WS, Wong SW, Chun DYY, Wong KS, Chan KSS. Experience of caregiving with caregivers of patients with first-episode psychosis. Hong Kong J Psychiatry. 2008;18:101–6.

    Google Scholar 

  45. 45.

    Negm MG, Mahdy RS, Alshaf MA, Khashaba Rafi R, Latif AE. Comparison of family burden, quality of life, and disability in obsessive compulsive disorder and schizophrenia in Zagazig University Hospitals. Egypt J Psychiatr. 2014;35:39–44.

    Article  Google Scholar 

  46. 46.

    Nehra R, Chakrabarti S, Sharma R. Psychometric properties of the Hindi version of the coping checklist of Scazufca and Kuipers. Ind J Clin Psychol. 2002;29:79–84.

    Google Scholar 

  47. 47.

    Pickett SA, Cook JA, Cohler BJ, Solomon ML. Positive parent/adult child relationships: impact of severe mental illness and caregiving burden. Am J Orthopsychiatry. 1997;67:220–30.

    PubMed  Article  PubMed Central  Google Scholar 

  48. 48.

    Quinn C, Clare L, Woods B. The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: a systematic review. Aging Ment Health. 2009;13:143–54.

    PubMed  Article  PubMed Central  Google Scholar 

  49. 49.

    Ramos-Cerqueira AT, Torres AR, Torresan RC, Negreiros AP, Vitorino CN. Emotional burden in caregivers of patients with obsessive-compulsive disorder. Depress Anxiety. 2008;25:1020–7.

    PubMed  Article  PubMed Central  Google Scholar 

  50. 50.

    Renshaw KD, Chambless DL, Rodebaugh TL, Steketee G. Living with severe anxiety disorders: relatives’ distress and reactions to patient’s behaviours. Clin Psychol Psychother. 2000;7:190–200.

    Article  Google Scholar 

  51. 51.

    Robins LN, Helzer JE, Croughan J, Ratcliff KS. The national institute of mental health diagnostic interview schedule: its history, characteristics and validity. Arch Gen Psychiatry. 1981;38:381–9.

    PubMed  Article  PubMed Central  Google Scholar 

  52. 52.

    Robins LN, Helzer JE, Weissman MM, Orvaschel H, Gruenberg E, Burke JD, Regier DA. Life time prevalence of specific psychiatric disorders in three sites. Arch Gen Psychiatry. 1984;41(10):949–58.

    PubMed  Article  PubMed Central  Google Scholar 

  53. 53.

    Saxena S, Chandiramani K, Bhargava R. WHOQOL-Hindi: a questionnaire for assessing the quality of life in health care settings in India. World Health Organisation Quality of life. Natl Med J India. 1998;11:160–5.

    PubMed  PubMed Central  Google Scholar 

  54. 54.

    Scazufca M, Kupiers E. Coping strategies in relatives of people with schizophrenia before and after psychiatric admission. Br J Psychiatry. 1999;174:154–8.

    PubMed  Article  PubMed Central  Google Scholar 

  55. 55.

    Sequeira C. Difficulties, coping strategies, satisfaction and burden in informal Portuguese caregivers. J Clin Nurs. 2013;22:491–500.

    PubMed  Article  PubMed Central  Google Scholar 

  56. 56.

    Sheehan DV, Lecrubier Y, Sheehan KH, Amorim P, Janavs J, Weiller E, Hergueta T, Baker R, Dunbar GC (1998) The Mini-International Neuropsychiatric Interview (M.I.N.I.): the development and validation of a structured diagnostic psychiatric interview for DSM-IV and ICD 10. J Clin Psychiatry 59(20): 22–33.

  57. 57.

    Siu BW, Lam CL, Chan WC (2012) Pattern and determinants of burden in Chinese families of adults with obsessive-compulsive disorder. J Anxiety Disord 26: 252–257.

  58. 58.

    Steketee G. Disability and family burden in obsessive-compulsive disorder. Can J Psychiatry. 1997;42:919–28.

    PubMed  Article  PubMed Central  Google Scholar 

  59. 59.

    Stengler-Wenzke K, Kroll M, Matschinger H, Angermeyer MC. Quality of life in relatives of patients with obsessive-compulsive disease. Compr Psychiatry. 2006;47:523–7.

    PubMed  Article  PubMed Central  Google Scholar 

  60. 60.

    Stengler-Wenzke K, Trosbach J, Dietrich S, Angermeyer MC. Subjective burden and coping strategies of relatives of patients with OCD. J Adv Nurs. 2004;48:35–42.

    PubMed  Article  PubMed Central  Google Scholar 

  61. 61.

    Stewart SE, Hu YP, Leung A, Chan E, Hezel DM, Lin SY, Belschner L, Walsh C, Geller DA, Pauls DL. A multisite study of family functioning impairment in pediatric obsessive-compulsive disorder. J Am Acad Child Adolesc Psychiatry. 2017;56(3):241–9.

    PubMed  Article  PubMed Central  Google Scholar 

  62. 62.

    Thomas JK, Kumar PNS, Verma AN, Sinha VK, Andrade C. Psychosocial dysfunction and family burden in schizophrenia and obsessive- compulsive disorder. Indian J Psychiatry. 2004;46:238–43.

    PubMed  PubMed Central  Google Scholar 

  63. 63.

    Torres AR, Hoff NT, Padovani CR, Ramos Cerqueira AT. Dimensional analysis of burden in family caregivers of patients with obsessive-compulsive disorder. Psychiatry Clin Neurosci. 2012;66:432–41.

    PubMed  Article  PubMed Central  Google Scholar 

  64. 64.

    Veltro F, Maglian L, Lobrace S, Morosini PL, Maj M. Burden on the relatives of patients with schizophrenia versus neurotic disorders: a pilot study. Soc Psychiatry Psychiatr Epidemiol. 1994;29:66–70.

    PubMed  PubMed Central  Google Scholar 

  65. 65.

    Verma M, Sinha UK. Burden of Care and stress in family members of patients suffering from obsessive-compulsive disorder. Delhi Psychiatry J. 2013;16:375–9.

    Google Scholar 

  66. 66.

    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;57:45–56.

    PubMed  Article  PubMed Central  Google Scholar 

  67. 67.

    Weissman MM, Bland RC, Canino GJ, Hwu HG, Lee CK. The cross-national epidemiology of obsessive-compulsive disorder. J Clin Psychiatry. 1994;55:5–10.

    PubMed  PubMed Central  Google Scholar 

  68. 68.

    Wig NN, Verma SK (1979) Construction and standardization of PGI Health Questionnaire N2. Agra Psychol Research Cell, Agra

  69. 69.

    Wu MS, Hamblin R, Nadeau J, Simmons J, Smith A, Wilson M, Eken S, Small B, Phares V, Storch EA. Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment. Compr Psychiatry. 2018;80:46–56.

    PubMed  Article  PubMed Central  Google Scholar 

  70. 70.

    Yu DSF, Cheng ST, Wang J. Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. Int J Nurs Stud. 2018;79:1–26.

    PubMed  Article  PubMed Central  Google Scholar 

  71. 71.

    Zwahlen D, Hagenbuch N, Carley MI, Jenewein J, Buchi S. Posttraumatic growth in cancer patients and partners-effects of role, gender and the dyad on couples’ posttraumatic growth experience. Psychooncology. 2010;19:12–20.

    PubMed  Article  PubMed Central  Google Scholar 

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SM: designing the study, collecting the resource material, writing the research proposal, coding the data, analysis of data, writing the draft of the paper, final approval of paper. SG: designing the study, writing the research proposal, analysis of data, writing the draft of the paper, final approval of paper. SC: designing the study, writing the research proposal, analysis of data, writing the draft of the paper, final approval of paper.

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Correspondence to Sandeep Grover.

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Mahajan, S., Grover, S. & Chakrabarti, S. Caregiving in Obsessive Compulsive Disorder: A study from North India. J. Psychosoc. Rehabil. Ment. Health (2021). https://doi.org/10.1007/s40737-021-00236-6

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Keywords

  • Caregivers
  • Caregiving
  • Positive aspects
  • Obsessive compulsive disorder