May 2024

Volume 07 Issue 05 May 2024
Caregiver Burden for Carers of Chronically Mentally Ill Patients: A Study With Families in Cyprus
1Koulla Erotocritou, 2Loucia Dimitriou
1Erotocritou Κοulla (BSW, MSW in Social Work), Special Teaching Staff, Department of Psychology and Social Sciences, Frederick University, Limassol, Cyprus
2Dimitriou Loucia (PhD Psychology). Professor of Psychology, Department of Psychology and Social Sciences, Frederick University, Limassol, Cyprus
DOI : https://doi.org/10.47191/ijsshr/v7-i05-38

Google Scholar Download Pdf
ABSTRACT

Having a chronically mentally ill person in the family presents a challenge for the entire family system, not only on a daily life basis but also regarding their psycho-emotional and social life. The present study focuses on caregivers of chronically ill patients' burden on four levels of possible disruption: the economic burden, the impact on family life, sociability, health, and behavior, and the impact of perceived aggression by considering the demographic characteristics of the caregivers, but also the socio-demographic characteristics of the chronically ill family member(s) they are taking care of. We conducted a quantitative survey with a sample of 90 family members/caregivers and the corresponding 90 chronically ill patients under their care from all districts of the Republic of Cyprus. Participants completed the "Family Burden Scale" (FBS-23) (Madianos et al., 2004), a personal information form with demographic information, and a questionnaire regarding the demographics and the illness trajectory of the chronically mentally ill family member (age of disease onset, diagnosis, frequency of episodes). Our findings showed that most caregivers providing systematic care for a family member experienced high levels of disruption in their daily routine and sociability, perceived high levels of aggressive behaviors, felt moderately affected in their health and behavior, and carried a heavy economic burden. Older participants felt a significantly higher economic burden than younger caregivers, who perceived a significantly more significant negative impact on their health and behavior from taking care of a chronically ill family member.

KEYWORDS:

caregiver burden, chronic mental illness, economic burden, mental health, stress.

REFERENCES
1) Adelman, R., Tmanova L., Delgado, D., Dion, S., Lachs, M.S. (2014). Caregiver Burden: A Clinical Review. Jama-J Am Med Assoc. 311(10):1052–9.

2) Addo, R., Nonvignon, J., Aikins, M. (2013). Household costs of mental health care in Ghana. The journal of mental health policy and economics, 16(4):151–9. Epub 2014/02/15.

3) Ae-Ngibise, K., Doku, V., Asante, K., Owusu-Agyei, S. (2015). The experience of caregivers of people living with serious mental disorders: a study from rural Ghana. Global Health Action, 8, 10.3402/gha.v8.26957 PMC4429259.

4) Burton, L., Zdaniuk, B., Schulz, R., Jackson, S., & Hirsch, C. (2003). Transitions in spousal caregiving. Gerontologist, 43(2):230–41.

5) Cassie, K., & Sanders, S. (2008). Familial caregivers of older adults. In: Cummings, S., & Kropf, N. (editors). Handbook of Psychosocial Interventions with Older Adults: Evidence-Based Approaches. Philadelphia: Haworth Press.

6) Chadda R. K. (2014). Caring for the family caregivers of persons with mental illness. Indian journal of psychiatry, 56(3), 221–227. https://doi.org/10.4103/0019-5545.140616.

7) Copeland, J. (2010). World Federation for Mental Health perspectives on person-centered medicine. International journal of integrated care. 10 Suppl. e009. 10.5334/ijic.479.

8) Cornaggia, C. M., Beghi, M., Pavone, F., & Barale, F. (2011). Aggression in psychiatry wards: a systematic review. Psychiatry Research, 189(1), 10–20. https://doi.org/10.1016/j.psychres.2010.12.024.

9) Ebrahim, O.S., Al-Attar, G.S.T., Gabra, R.H. (2020). Stigma and burden of mental illness and their correlates among family caregivers of mentally ill patients. J. Egypt. Public. Health. Assoc. 95, 31 https://doi.org/10.1186/s42506-020-00059-6.

10) Economou, M., Pallis, A., Pepou, L. E., Louki, E., Patelakis, A., Kolostoubis, ., et al. (2014). Psychoeducation and Behavioral Family Therapy in Schizophrenia: clinical application in Greece. Cognitive-Behavioral Research and Therapy, 1(1), 15-24.

11) Hadryś, T., Adamowski, T., & Kiejna, A. (2011). Mental disorder in Polish families: is diagnosis a predictor of caregiver’s burden? Social psychiatry and psychiatric epidemiology, 46, 363-372.

12) Hoeinig, J, Hamilton, M. (1966). The schizophrenic patient in the community and his effect on the household. International Journal of Social Psychiatry, 12: 165-176.

13) Jo, C. (2014). Cost-of-illness studies: concepts, scopes, and methods. Clinical and Molecular Hepatology, 20(4):327–37. 10.3350/cmh.2014.20.4.327 PMC4278062.

14) Kate, N., Grover, S., Kulhara, P., & Nehra, R. (2013). Caregiving appraisal in schizophrenia: A study from India. Soc Sci Med.98:135–40.

15) Kaur N. (2014). Caregiving burden and social support among caregivers of schizophrenic patients. Delhi Psychiatry J.,17:337–42.

16) Lipski U., Baker K., Gold M., Kelly D., Kwok M., Moore C., Orr A., Santamaura J., Trainor J. (2006). ‘Caring Together: Families as Partners in the Mental Health and Addiction System.’ Available online at http://ontario.cmha.ca/public_policy/caring-together-families-as-partners-in-the-mental-health-and-addiction-system/#.Uy6NdPldXuk

17) Fu, W., Li, J., Fang, F. (2021). Subjective burdens among informal caregivers of critically ill patients: a cross-sectional study in rural Shandong, China. BMC Palliat Care 20, 167. https://doi.org/10.1186/s12904-021-00858-4

18) Madianos, M., Economou, M., Dafni, O., Koukia, E., Palli, A., & Rogakou, E. (2004). Family disruption, economic hardship and psychological distress in schizophrenia: can they be measured?. European Psychiatry, 19(7), 408–414.

19) Magliano, L., Fiorillo, A., De Rosa, C., Malangone, C., Maj, M. (2005). National Mental Health Project Working Group. Family burden in long-term diseases: A comparative study in schizophrenia vs. physical disorders. Soc Sci Med.61:313–22.

20) Madathumkovilakath, N., Kizhakkeppattu, S., Saleem, T., & Kazhungil, F. (2018). Coping strategies of caregivers towards aggressive behaviors of persons with severe mental illness. Asian Journal of Psychiatry, 35. 10.1016/j.ajp.2018.04.032.

21) Nicols, M., & Schwarz, C. (1991). Family Therapy, Concepts and Methods. Michigan: Allyn & Bacon.

22) Papathanassoglou, E. D. (2010). Psychological support and outcomes for ICU patients. Nursing in Critical Care, 15(3), 118–128.

23) Platt S. (1985). Measuring the burden of psychiatric illness on the family: An evaluation of some rating scales. Psychol Med. 15:383–93.

24) Pratima, B., & Jena S. (2011). Caregiver burden in severe mental illness. Delhi Psychiatry Journal, 14:211–19

25) Rende, R., & Plomin, R. (1993). Families at risk for psychopathology: Who becomes affected and why? Development and Psychopathology, 5(4), 529-540. https://doi.org/10.1017/S0954579400006143.

26) Savage, S., & Bailey, S. (2004). The impact of caring on caregivers' mental health: a review of the literature. Australian Health Review, 27(1):111–7. 10.1071/AH042710111.

27) Schock, A., & Gavazzi, S. (2005). Mental illness and families. In: McKenry, P. & Price, S. (eds): Families and Change: Coping with stressful events and transitions. Thousand Oaks, Calif., Sage.

28) Schneider-Kamp A., & Askegaard, S. (2022). Reassembling the elderly consumption ensemble: Retaining independence through smart assisted living technologies. J. Mark. Manag. 38:2011–2034. doi: 10.1080/0267257X.2022.2078862.

29) Schnitzer, S., Šteko, M., Amin-Kotb, K., Gellert, P., Balke, K., & Kuhlmey, A. (2017). Caregivers’ burden and Education level: Does subjective health mediate the association? Innovation in Aging (1): 447-447. 10.1093/geroni/igx004.1599.

30) Schulz, R., & Martire, L. (2004). Family caregiving of persons with dementia: prevalence, health effects, and support strategies. The American journal of geriatric psychiatry: official journal of the American Association for Geriatric Psychiatry, 12(3), 240–249.

31) Selwyn, C. N., Lathan, E. C., Richie, F., Gigler, M. E., & Langhinrichsen-Rohling, J. (2021). Bitten by the system that cared for them: Towards a trauma-informed understanding of patients' healthcare engagement. Journal of Trauma & Dissociation, 22(5), 636–652.

32) Shah, A., Wadoo, O., Latoo, J. (2010). Psychological distress in carers of people with mental disorders. Brit J Med Pract. 3(3):e1898.

33) Sharma, N., Chakrabarti, S., & Grover, S. (2016). Gender differences in caregiving among family - caregivers of people with mental illnesses. World journal of psychiatry, 6(1), 7–17. https://doi.org/10.5498/wjp.v6.i1.7.

34) Statharou, A., Papathanasiou, I., Gouva, M., Masthraki, B., Berg, A., Daragiannis, D., Kotrotsiou, E., (2011). Investigating the burden of caregivers of the mentally ill. Ιnterdisciplinary health care, 3(2): 59-69

35) Tough, H., Brinkhof, M. W. G., Siegrist, J., Fekete, C., & SwiSCI Study Group (2019). Social inequalities in the burden of care: a dyadic analysis in the caregiving partners of persons with a physical disability. International journal for equity in health, 19(1), 3. https://doi.org/10.1186/s12939-019-1112-1.

36) Tough, H., Siegrist, J., & Fekete, C. (2017). Social relationships, mental health and wellbeing in physical disability: a systematic review. BMC public health, 17(1), 414. https://doi.org/10.1186/s12889-017-4308-6

37) Treudley, M. (1946). Mental illness and family routines. Mental Hygiene, 30:235–49.

38) Varghese, M., Pereira, J., Naik, S., Balaji, M., Patel, V. (2017). Experiences of stigma and discrimination faced by family caregivers of people with schizophrenia in India. Soc Sci Med., 178:66–77.

39) Wade, D. T., & Halligan, P. W. (2017). The biopsychosocial model of illness: A model whose time has come. SAGE publications.

40) WHO (2022). Promoting mental health: concepts, emerging evidence, practice. Switzerland: World Health Organization. https://www.who.int/news-room/fact-sheets/detail/mental-disorders.\

41) Xiong C., Biscardi M., Astell A., Nalder E., Cameron J.I., Mihailidis A., Colantonio A. (2020). Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: A systematic review. PLoS ONE. 15:e0231848. doi: 10.1371/journal.pone.0231848

42) Vaingankar, J., Chong, S., Abdin, E., Picco, L, Jeyagurunathan, A., Zhang, Y., et al. (2016). Care participation and burden among informal caregivers of older adults with care needs and associations with dementia. International Psychogeriatrics / Ipa. 28(2):221–31. 10.1017/S104161021500160X PMC4720142.

43) Varghese, M., Pereira, J., Naik, S., Balaji, M., Patel, V. (2017). Experience of stigma and discrimination faced by family caregivers of people with schizophrenia in India. Soc Sci Med. 178:66–77.

44) Verbakel, E., Metzelthin, S., Kempen, G. (2018). Caregiving to Older Adults: Determinants of Informal Caregivers’ Subjective Well-being and Formal and Informal Support as Alleviating Conditions. J. Gerontol. Ser. B Psychol. Sci. Soc. Sci., 73:1099–1111.

45) Zauszniewski, J., & Bekhet, A. (2014). Factors Associated with the Emotional Distress of Women Family Members of Adults with Serious Mental Illness. College of Nursing Faculty Research and Publications. 298. https://epublications.marquette.edu/nursing_fac/298
Volume 07 Issue 05 May 2024

Indexed In

Avatar Avatar Avatar Avatar Avatar Avatar Avatar Avatar Avatar Avatar Avatar Avatar Avatar Avatar Avatar Avatar