Menerima dan Memaknai Diagnosis: Pengalaman Family Caregiver dalam Proses Penyampaian Diagnosis Skizofrenia

Elsa Fairuza Dewi; Elizabeth Kristie Poerwandari

doi:10.35134/jpsy165.v16i4.289

Authors

Elsa Fairuza Dewi Universitas Indonesia
Elizabeth Kristie Poerwandari Universitas Indonesia

DOI:

https://doi.org/10.35134/jpsy165.v16i4.289

Keywords:

schizophrenia, diagnosis, family caregiver, psychotic, mental health practitioner

Abstract

The diagnosis of schizophrenia is something important that needs to be informed, not only to the patient but also to the family caregiver. Delivering a clear diagnosis and related information, can help the family caregiver understand their family member's condition and their role as a family caregiver. This, in turn, can impact the success of the patient's treatment process. However, in practice, there are still many healthcare professionals who are hesitant to explicitly communicate a diagnosis of schizophrenia. In Indonesia, some family caregivers experiencing a lack of information about the diagnosis of schizophrenia provided by healthcare providers. This study aims to understand the experiences of family caregivers of individuals with schizophrenia regarding the process of diagnosis communication and other aspects related to the diagnosis of schizophrenia. Semi-structured interviews were conducted with 5 family caregivers who were aware of the diagnosis process of their family members. The data analyzed using a reflexive thematic analysis approach. The results revealed several themes in the experiences of family caregivers during the diagnosis communication process, including pre-diagnosis assumptions, uncertainty about diagnosis-related information, various responses after receiving the diagnosis, the presence of additional sources of information, communication patterns with healthcare providers, and expectations related to the diagnosis communication process. In conclusion, most family caregivers expect a clear, detailed, and comprehensive diagnosis communication. Additionally, family caregivers emphasize the importance of warmth, empathy, and a willingness to spend time discussing their family member's condition with caregivers.

References

Jutel A. (2019). The Expertness of His Healer: Diagnosis, Disclosure and the Power of A Profession. Health, 23(3), 289–305. Https://doi.org/10.1177/1363459317745956.

Lagunes-Cordoba, E., Davalos, A., Fresan-Orellana, A., Jarrett, M., Gonzalez-Olvera, J., Thornicroft, G., & Henderson, C. (2021). Mental Health Service Users' Perceptions of Stigma, from the General Population and from Mental Health Professionals in Mexico: A Qualitative Study. Community Mental Health Journal, 57(5), 985–993. Https://doi.org/10.1007/s10597-020-00706-4.

Igra, L., Roe, D., Lavi-Rotenberg, A., Lysaker, P. H., & Hasson-Ohayon, I. (2021). “Making Sense of My Diagnosis”: Assimilating Psychoeducation Into Metacognitive Psychotherapy for Individuals with Schizophrenia. Journal of Psychotherapy Integration, 31(3), 277–290. Https://doi.org/10.1037/int0000207.

Bhise, V., Rajan, S. S., Sittig, D. F., Morgan, R. O., Chaudhary, P., & Singh, H. (2018). Defining and Measuring Diagnostic Uncertainty in Medicine: A Systematic Review. Journal Of General Internal Medicine, 33(1), 103–115. Https://doi.org/10.1007/s11606-017-4164-1.

Murwasuminar, B., Munro, I., & Recoche, K. (2023). Mental Health Recovery for People with Schizophrenia in Southeast Asia: A Systematic Review. Journal Of Psychiatric and Mental Health Nursing, 30(4), 620–636. Https://doi.org/10.1111/jpm.12902.

Lasalvia, A., Vita, A., Bellomo, A., Tusconi, M., Favaretto, G., Bonetto, C., Zanalda, E., Mencacci, C., & Carpiniello, B. (2021). Renaming Schizophrenia? A Survey Among Psychiatrists, Mental Health Service Users and Family Members in Italy. Schizophrenia Research, 228, 502–509. Https://doi.org/10.1016/j.schres.2020.03.047.

Hackmann, C., Wilson, J., Perkins, A., & Zeilig, H. (2019). Collaborative Diagnosis Between Clinician and Patient: Why to Do it and what to Consider. BJPsych Advances, 25(4), 214-222. Https://doi.org/10.1192/bja.2019.6.

Amsalem, D., Martin, A., Mosheva, M., Soul, O., Korotkin, L., Ziv, A., Gothelf, D., & Gross, R. (2021). Delivering Difficult News: Simulation-Enhanced Training Improves Psychiatry Residents' Clinical Communication Skills. Frontiers in psychiatry, 12, 649090. Https://doi.org/10.3389/fpsyt.2021.649090.

Cleary, M., West, S., Hunt, G. E., McLean, L., & Kornhaber, R. (2020). A Qualitative Systematic Review of Caregivers' Experiences of Caring for Family Diagnosed with Schizophrenia. Issues in Mental Health Nursing, 41(8), 667–683. Https://doi.org/10.1080/01612840.2019.171001.

Shiraishi, N., & Reilly, J. (2019). Positive and Negative Impacts of Schizophrenia on Family Caregivers: A Systematic Review and Qualitative Meta-Summary. Social Psychiatry and Psychiatric Epidemiology, 54(3), 277–290. Https://doi.org/10.1007/s00127-018-1617-8.

Tamizi, Z., Fallahi-Khoshknab, M., Dalvandi, A., Mohammadi-Shahboulaghi, F., Mohammadi, E., & Bakhshi, E. (2020). Caregiving Burden in Family Caregivers of Patients with Schizophrenia: A Qualitative Study. Journal Of Education and Health Promotion, 9, 12. Https://doi.org/10.4103/jehp.jehp_356_19.

Imkome, E. U., & Waraassawapati, K. (2018). Perspectives and Experiences of Primary Caregivers of Individuals with Schizophrenia in Thailand. Issues in Mental Health Nursing, 39(10), 858–864. Https://doi.org/10.1080/01612840.2018.148831.

Amsalem, D., Hasson-Ohayon, I., Gothelf, D., & Roe, D. (2018). How do Patients with Schizophrenia and Their Families Learn About the Diagnosis?. Psychiatry, 81(3), 283–287. Https://doi.org/10.1080/00332747.2018.144367.

Novais, F., Ganança, L., Barbosa, M., & Telles-Correia, D. (2022). Communication Skills in Psychiatry for Undergraduate Students: A Scoping Review. Frontiers in Psychiatry, 13, 972703. Https://doi.org/10.3389/fpsyt.2022.972703.

Subu, M. A., Holmes, D., Arumugam, A., Al-Yateem, N., Maria Dias, J., Rahman, S. A., Waluyo, I., Ahmed, F. R., & Abraham, M. S. (2022). Traditional, Religious, and Cultural Perspectives On Mental Illness: A Qualitative Study on Causal Beliefs And Treatment Use. International Journal of Qualitative Studies on Health and Well-Being, 17(1), 2123090. Https://doi.org/10.1080/17482631.2022.212309.

McNabb, D. E. (2020). Introduction to Mixed Methods Research. Research Methods for Political Science, 363–372. Https://doi.org/10.4324/9781003103141-32.

Bekele, W. B. & Ago, F. Y. (2022). Sample Size for Interview in Qualitative Research in Social Sciences: A Guide to Novice Researchers. Research in Educational Policy and Management, 4(1), 42-50. Https://doi.org/10.46303/repam.2022.3.

Moser, A., & Korstjens, I. (2018). Series: Practical Guidance to Qualitative Research. Part 3: Sampling, Data Collection and Analysis. The European journal of general practice, 24(1), 9–18. Https://doi.org/10.1080/13814788.2017.137509.

Braun, V., Clarke, V. (2019). Reflecting on Reflexive Thematic Analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589-597, Https://doi.org/10.1080/2159676X.2019.162880.

Forcheron, V., Sacareau, E., Bourgeois, J., Pouchon, A., Polosan, M., Gaboreau, Y., & Dondé, C. (2023). Experience, Impact and Needs of Informal Parental Caregivers Around the Communication of A Diagnosis of Schizophrenia. The International Journal of Social Psychiatry, 69(1),101–110. Https://doi.org/10.1177/00207640211068978.

Perkins, A., Ridler, J., Browes, D., Peryer, G., Notley, C., & Hackmann, C. (2018). Experiencing Mental Health Diagnosis: A Systematic Review of Service User, Clinician, and Carer Perspectives Across Clinical Settings. The Lancet. Psychiatry, 5(9), 747–764. Https://doi.org/10.1016/S2215-0366(18)30095-6.

Naeini, A., Ranjbar, H., Mohammadsadeghi, H., Alavi, K., Ahmadkhaniha, H., & Rasoulian, M. (2020). Assessment of Psychiatrists' Approaches Regarding Disclosure of Psychiatric Disorders to Their Patients: A Qualitative Study. Medical Journal of the Islamic Republic of Iran, 34, 82. Https://doi.org/10.34171/mjiri.34.82.

Luo, A., Qin, L., Yuan, Y., Yang, Z., Liu, F., Huang, P., & Xie, W. (2022). The Effect of Online Health Information Seeking on Physician-Patient Relationships: Systematic Review. Journal of Medical Internet Research, 24(2), e23354. Https://doi.org/10.2196/23354.

Onwumere, J., Amaral, F., & Valmaggia, L. R. (2018). Digital Technology for Caregivers of People with Psychosis: Systematic Review. JMIR Mental Health, 5(3), e55. Https://doi.org/10.2196/mental.9857.

Mucci, A., Kawohl, W., Maria, C., & Wooller, A. (2020). Treating Schizophrenia: Open Conversations and Stronger Relationships Through Psychoeducation and Shared Decision-Making. Frontiers in Psychiatry, 11, 761. Https://doi.org/10.3389/fpsyt.2020.00761.