Optimalisasi Dukungan Sosial Bagi Pasien Lupus dan Keluarga Pasca Pandemi Covid-19 di Yayasan Kupu Parahita Indonesia

Elvira Sari Dewi; Choirinnisa Meilia Ayu Putri; Elynca Putri Desfryda; Sephia Dwinadella; Cesarius Singgih Wahono; Dewi Purnama Sari; Kusworini Handono; Handono Kalim

doi:10.23887/ijcsl.v7i2.56434

Authors

Elvira Sari Dewi Universitas Brawijaya, Malang, Indonesia https://orcid.org/0000-0003-1922-2693
Choirinnisa Meilia Ayu Putri Universitas Brawijaya, Malang, Indonesia
Elynca Putri Desfryda Universitas Brawijaya, Malang, Indonesia
Sephia Dwinadella Universitas Brawijaya, Malang, Indonesia https://orcid.org/0000-0002-5445-9912
Cesarius Singgih Wahono Universitas Brawijaya, Malang, Indonesia
Dewi Purnama Sari Universitas Brawijaya, Malang, Indonesia
Kusworini Handono Universitas Brawijaya, Malang, Indonesia
Handono Kalim Universitas Brawijaya, Malang, Indonesia

DOI:

https://doi.org/10.23887/ijcsl.v7i2.56434

Keywords:

Dukungan sosial, Keluarga, Lupus, Pandemi Covid-19, Pasien

Abstract

Selama pandemi Covid-19, pasien lupus dan keluarga dihadapkan dengan berbagai stresor dan tantangan yang dapat mempengaruhi dukungan sosial. Kegiatan pengabdian pada masyarakat ini bertujuan untuk mengoptimalkan dukungan sosial bagi pasien lupus dan keluarga pasca pandemi Covid-19 di Yayasan Kupu Parahita Indonesia. Metode yang digunakan dalam kegiatan pengabdian pada masyarakat ini adalah dengan melakukan Forum Group Discussion (FGD) untuk menggali kebutuhan pasien lupus dan keluarga akan dukungan sosial; menyelenggarakan pertemuan offline antara pasien lupus, keluarga, dan tenaga kesehatan pemerhati lupus; serta memberikan edukasi intens secara online. Hasil kegiatan menunjukkan bahwa dari kegiatan FGD, didapatkan permasalahan bahwa belum semua pasien lupus dan keluarga di Yayasan Kupu Parahita Indonesia mengenal dan memahami lupus dengan baik. Melalui kegiatan yang diselenggarakan secara offline maupun online, masalah yang didapat saat FGD teratasi, di mana pasien lupus dan keluarga lebih memahami lupus dan dengan sharing sesama pejuang lupus, kebutuhan dukungan sosial pasien lupus dan keluarga terpenuhi. Dapat disimpulkan bahwa pendekatan secara intens baik secara offline maupun online sangat diperlukan untuk mengoptimalkan dukungan sosial bagi pasien lupus dan keluarga.

References

Adams, R. N., Mosher, C. E., Cannady, R. S., Lucette, A., & Kim, Y. (2014). Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients. Psycho-Oncology, 23(10), 1178–1184. https://doi.org/10.1002/pon.3558. DOI: https://doi.org/10.1002/pon.3558

Amalia, A., & RahmatikaR. (2020). Peran Dukungan Sosial Bagi Kesejahteraan Psikologis Family Caregiver Orang Dengan Skizofrenia (Ods) Rawat Jalan. Jurnal Ilmu Keluarga & Konsumen, 13(3), 228-238. https://doi.org/10.24156/jikk.2020.13.3.228. DOI: https://doi.org/10.24156/jikk.2020.13.3.228

Avis, K. A., Stroebe, M., & Schut, H. (2021). Stages of Grief Portrayed on the Internet: A Systematic Analysis and Critical Appraisal. Frontiers in Psychology, 12. https://doi.org/10.3389/fpsyg.2021.772696. DOI: https://doi.org/10.3389/fpsyg.2021.772696

Beach, S. R. H., Fincham, F. D., Hurt, T. R., Mcnair, L. M., & Stanley, S. M. (2008). Prayer and marital intervention: A conceptual framework. Journal of Social and Clinical Psychology, 27(7), 641–669. https://doi.org/10.1521/jscp.2008.27.7.641. DOI: https://doi.org/10.1521/jscp.2008.27.7.641

Beckerman, N. L., Auerbach, C., & Blanco, I. (2011). Psychosocial dimensions of SLE: Implications for the health care team. Journal of Multidisciplinary Healthcare, 4, 63–72. https://doi.org/10.2147/JMDH.S19303. DOI: https://doi.org/10.2147/JMDH.S19303

Berger, L. M., & Font, S. A. (2015). The role of the family and family-centered programs and policies. Future of Children, 25(1), 155–176. https://doi.org/10.1353/foc.2015.0007. DOI: https://doi.org/10.1353/foc.2015.0007

Cacciatore, J., Thieleman, K., Fretts, R., & Jackson, L. B. (2021). What is good grief support? Exploring the actors and actions in social support after traumatic grief. PLoS ONE, 16(5 May). https://doi.org/10.1371/journal.pone.0252324. DOI: https://doi.org/10.1371/journal.pone.0252324

Chérif, L., Niemiec, R., & Wood, V. (2022). Character strengths and inner peace. International Journal of Wellbeing, 12(3), 16–34. https://doi.org/10.5502/ijw.v12i3.2195. DOI: https://doi.org/10.5502/ijw.v12i3.2195

Cojocaru, M., Inimioara, Cojocaru, M., Silosi, I., & Doina Vrabie, C. (2022). Cutaneous Manifestations of Systemic Lupus Erythematosus. Journal of the Dermatology Nurses’ Association, 14(4), 163–169. https://doi.org/10.1097/JDN.0000000000000692. DOI: https://doi.org/10.1097/JDN.0000000000000692

Dasar, S. S., & Harianja, M. M. (2022). Implementasi dan Manfaat Ice breaking untuk Meningkatkan Minat Belajar Siswa Sekolah Dasar May Muna Harianja 1  , Sapri 2. 6(1), 1324–1330. DOI: https://doi.org/10.31004/basicedu.v6i1.2298

Dewi, E., Dewi, H., Kusuma, A., Suryanto, S., Evi, N., & Hidayah, R. (2021). Psychoreligious Therapy Increase Self-Esteem Of Lupus Survivors At Kupu Parahita Indonesia Foundation. Journal of Community Health and Preventive Medicine, 1(2), 16–23. https://doi.org/10.21776/ub.jochapm.2021.001.02.3. DOI: https://doi.org/10.21776/ub.jochapm.2021.001.02.3

Dewi, E. S., Kusuma, A. W., Wihastuti, T. A., Utami, Y. W., Wisnasari, S., Susanto, A. H., & Tamrin, T. (2021). Pelatihan Hipnosis 5 Jari Pada Perawat Komunitas: Strategi Untuk Menurunkan Tingkat Nyeri Dan Stres Warga Kawasan Industri Candi Semarang. Majalah Kesehatan, 8(4), 216–222. https://doi.org/10.21776/ub.majalahkesehatan.2021.008.04.5. DOI: https://doi.org/10.21776/ub.majalahkesehatan.2021.008.04.5

Dienillah, A. N., & Chotidjah, S. (2021). Dukungan sosial bagi penderita lupus: Dapatkah menjadi moderator bagi efek penerimaan diri terhadap rasa syukur? Jurnal Psikologi Sosial, 19(1), 89-98. https://doi.org/10.7454/jps.2021.10. DOI: https://doi.org/10.7454/jps.2021.10

Dreisoerner, A., Junker, N. M., Schlotz, W., Heimrich, J., Bloemeke, S., Ditzen, B., & van Dick, R. (2021). Self-soothing touch and being hugged reduce cortisol responses to stress: A randomized controlled trial on stress, physical touch, and social identity. Comprehensive Psychoneuroendocrinology, 8. https://doi.org/10.1016/j.cpnec.2021.100091. DOI: https://doi.org/10.1016/j.cpnec.2021.100091

Dunfee, M. N., Brown, R. L., & Schoenberg, N. E. (2021). Perspectives on Religious and Spiritual Coping among Rural Grandparent Caregivers. Journal of Family Issues, 42(7), 1495–1515. https://doi.org/10.1177/0192513X20938857. DOI: https://doi.org/10.1177/0192513X20938857

Fathoni, M., Rachmawati, T. A., Dewi, E. S., Djati, A. P., Lestari, S., Yusuf, A., & Waluyo, C. S. (2022). The preparedness of disaster among nurses in community health centers in rural areas during the COVID-19 pandemic in Malang City. Enfermeria Clinica, 32, S54–S57. https://doi.org/10.1016/j.enfcli.2022.03.018. DOI: https://doi.org/10.1016/j.enfcli.2022.03.018

Fitryani, D. P. C., Berek, N. C., Anakaka, D. L., & Kiling, I. Y. (2021). The Dynamics of Grief in Late Adolescence After Maternal Death in Terms of The Theory of Kübler-Ross. Journal of Health and Behavioral Science, 3(4), 481–489. https://doi.org/10.35508/jhbs.v3i4.4384. DOI: https://doi.org/10.35508/jhbs.v3i4.4384

Ghafoor, H., Nordbeck, P., Ritter, O., Pauli, P., & Schulz, S. M. (2022). Can Religiosity and Social Support Explain Effects of Trait Emotional Intelligence on Health-Related Quality of Life: A Cross-Cultural Study. Journal of Religion and Health, 61(1), 158–174. https://doi.org/10.1007/s10943-020-01163-9. DOI: https://doi.org/10.1007/s10943-020-01163-9

Handono, K., Dantara, T. W. I., Dewi, E. S., Pratama, M. Z., & Nurdiana, N. (2017). Bryophyllum pinnatum leaves ethanol extract inhibit maturation and promote apoptosis of systemic lupus erythematosus BALB/c mice B cells. Medical Journal of Indonesia, 26(4), 253–260. https://doi.org/10.13181/mji.v26i4.1899. DOI: https://doi.org/10.13181/mji.v26i4.1899

Harnadia, R., Eguweleira, S. H., Rumantyo, I. F. D., Himmah, A. C. A., Misbachussudur, M., Putri, C. M. A., Hanafi, M. A., & Dewi, E. S. (2021). Upaya Meningkatkan Kepercayaan Diri Tunanetra Dengan Permainan Braille Dare or Truth Card di SLB Muhammadiyah Jombang. Caring : Jurnal Pengabdian Masyarakat, 1(2), 9–15. DOI: https://doi.org/10.21776/ub.caringjpm.2021.001.02.2

Harris, M. A., & Orth, U. (2020). The link between self-esteem and social relationships: A meta-analysis of longitudinal studies. Journal of Personality and Social Psychology, 119(6), 1459–1477. https://doi.org/10.1037/pspp0000265. DOI: https://doi.org/10.1037/pspp0000265

Hassani, F., Zarea, K., Gholamzadeh Jofreh, M., Dashtebozorgi, Z., & Chan, S. W.-C. (2022). Effect of Perceived Social Support, Spiritual Well-being, Health Literacy, and Resilience on Quality of Life in Patients Undergoing Hemodialysis: A Structural Equation Model. Jundishapur Journal of Chronic Disease Care, 11(2). https://doi.org/10.5812/jjcdc.123080. DOI: https://doi.org/10.5812/jjcdc.123080

Holt, C. L., Roth, D. L., Huang, J., & Clark, E. M. (2018). Role of religious social support in longitudinal relationships between religiosity and health-related outcomes in African Americans. Journal of Behavioral Medicine, 41(1), 62–73. https://doi.org/10.1007/s10865-017-9877-4. DOI: https://doi.org/10.1007/s10865-017-9877-4

Hughes, O., & Hunter, R. (2022). Understanding the experiences of anger in the onset and progression of psoriasis: A thematic analysis. Skin Health and Disease, 2(4). https://doi.org/10.1002/ski2.111. DOI: https://doi.org/10.1002/ski2.111

Jannah, M., Nasution, T. H., Hidayah, R., Rizqinda Lailatur Lestari, Ulfi Nur Widiyanti, & Dewi, E. S. (2022). Relationship Between Family Support and Stress Levels of People with Lupus at the Kupu Parahita Indonesia Foundation. International Journal of Care Scholars, 5(3), 52–59. https://doi.org/10.31436/ijcs.v5i3.262. DOI: https://doi.org/10.31436/ijcs.v5i3.262

Jolly, M., & Katz, P. (2022). Predictors of stress in patients with Lupus. Frontiers in Medicine, 9. https://doi.org/10.3389/fmed.2022.986968. DOI: https://doi.org/10.3389/fmed.2022.986968

Leung, J., Baker, E. A., & Kim, A. H. J. (2021). Exploring intentional medication non-adherence in patients with systemic lupus erythematosus: The role of physician-patient interactions. Rheumatology Advances in Practice, 5(1), 1–9. https://doi.org/10.1093/rap/rkaa078. DOI: https://doi.org/10.1093/rap/rkaa078

Lombard, C. A. (2017). Psychosynthesis: A Foundational Bridge Between Psychology and Spirituality. Pastoral Psychology, 66(4), 461–485. https://doi.org/10.1007/s11089-017-0753-5. DOI: https://doi.org/10.1007/s11089-017-0753-5

Maazallahi, M., Ghonchepour, A., Sohrabi, M., Golestani, Z., Parandeh Afshar, P., Malakoutikhah, A., & Dehghan, M. (2021). Spiritual Well-Being among Medical and Nonmedical Science Students. Scientifica, 2021. https://doi.org/10.1155/2021/6614961. DOI: https://doi.org/10.1155/2021/6614961

McGrady, A., & Moss, D. (2018). Integrative pathways: Navigating chronic illness with a mind-body-spirit approach. In Integrative Pathways: Navigating Chronic Illness with a Mind-Body-Spirit Approach. Springer International Publishing. https://doi.org/10.1007/978-3-319-89313-6. DOI: https://doi.org/10.1007/978-3-319-89313-6

Mohebi, S., Parham, M., Sharifirad, G., & Gharlipour, Z. (2018). Social Support and Self ‑ Care Behavior Study. January, 1–6. https://doi.org/10.4103/jehp.jehp.

Nugraha, S., Poerwandari, E. K., & Lubis, D. U. (2021). The Role of Perceived Social and Spiritual Support and Depression to Health-related Quality of Life on Patients with SLE. Global Medical and Health Communication (GMHC), 9(3). https://doi.org/10.29313/gmhc.v9i3.8803. DOI: https://doi.org/10.29313/gmhc.v9i3.8803

Nur Itsna, I., Oktiawati, A., Hidayati, S., Studi, P., Keperawatan, D.-I., & Slawi, S. B. (2020). Focus Group Discussion (FGD) “Pencegahan Fatalitas Korban Kecelakaan Lalu Lintas.” JABI: Jurnal Abdimas Bhakti Indonesia, 1(2). DOI: https://doi.org/10.36308/jabi.v1i2.209

O’Connor, M. F. (2019). Grief: A brief history of research on how body, mind, and brain adapt. In Psychosomatic Medicine (Vol. 81, Issue 8, pp. 731–738). Lippincott Williams and Wilkins. https://doi.org/10.1097/PSY.0000000000000717. DOI: https://doi.org/10.1097/PSY.0000000000000717

Onyishi, C. N., Eseadi, C., Ilechukwu, L. C., Okoro, K. N., Okolie, C. N., Egbule, E., & Asogwa, E. (2022). Potential influences of religiosity and religious coping strategies on people with diabetes. World Journal of Clinical Cases, 10(25), 8816–8826. https://doi.org/10.12998/wjcc.v10.i25.8816. DOI: https://doi.org/10.12998/wjcc.v10.i25.8816

Ozcan, O., Hoelterhoff, M., & Wylie, E. (2021). Faith and spirituality as psychological coping mechanism among female aid workers: a qualitative study. Journal of International Humanitarian Action, 6(1). https://doi.org/10.1186/s41018-021-00100-z. DOI: https://doi.org/10.1186/s41018-021-00100-z

Peña-Vargas, C., Armaiz-Peña, G., & Castro-Figueroa, E. (2021). A biopsychosocial approach to grief, depression, and the role of emotional regulation. In Behavioral Sciences (Vol. 11, Issue 8). MDPI AG. https://doi.org/10.3390/BS11080110. DOI: https://doi.org/10.3390/bs11080110

Rahayu, H., & Yona, S. (2019). The Relationship Between Social Support, Spirituality With Stress Towards The Burden Of Family Caregivers Of Cancer Patients: A Literature Review. International Journal of Nursing and Health Services (IJNHS), 2(3), 1–8. https://doi.org/10.35654/ijnhs.v2i3.89. DOI: https://doi.org/10.35654/ijnhs.v2i3.89

Sari Dewi, E., Soemardini, S., & Setyo Rini, I. (2016). Efektivitas Terapi Kompres Dingin dalam Menurunkan Stres Orang dengan Lupus (Odapus) Dewasa Muda di Perhimpunan Masyarakat Peduli Lupus Parahita Malang. Majalah Kesehatan, 3(2), 65–75. https://doi.org/10.21776/ub.majalahkesehatan.003.02.3. DOI: https://doi.org/10.21776/ub.majalahkesehatan.003.02.3

Seiler, A., von Känel, R., & Slavich, G. M. (2020). The Psychobiology of Bereavement and Health: A Conceptual Review From the Perspective of Social Signal Transduction Theory of Depression. In Frontiers in Psychiatry (Vol. 11). Frontiers Media S.A. https://doi.org/10.3389/fpsyt.2020.565239. DOI: https://doi.org/10.3389/fpsyt.2020.565239

Sharif Nia, H., Gorgulu, O., Naghavi, N., Robles-Bello, M. A., Sánchez-Teruel, D., Khoshnavay Fomani, F., She, L., Rahmatpour, P., Allen, K. A., Arslan, G., & Pahlevan Sharif, S. (2021). Spiritual Well-Being, Social Support, and Financial Distress in Determining Depression: The Mediating Role of Impact of Event During COVID-19 Pandemic in Iran. Frontiers in Psychiatry, 12. https://doi.org/10.3389/fpsyt.2021.754831. DOI: https://doi.org/10.3389/fpsyt.2021.754831

Sugito, Lestari, D., Azrina, Y., Tri Novika, A., & Pangeran Antasari, S. (2021). Pengenalan Ice Breaking Dalam Meningkatkan Semangat Belajar Siswa (Vol. 3, Issue 2). DOI: https://doi.org/10.34012/bip.v3i2.1717

Torres-Soto, N. Y., Corral-Verdugo, V., & Corral-Frías, N. S. (2022). The relationship between self-care, positive family environment, and human wellbeing. Wellbeing, Space and Society, 3. https://doi.org/10.1016/j.wss.2022.100076. DOI: https://doi.org/10.1016/j.wss.2022.100076

Utami, R. S., & Raudatussalamah. (2016). Hubungan Dukungan Sosial Keluarga dengan Kepatuhan Berobat Penderita Hipertensi di Puskesmas Tualang. Jurnal Psikologi, 12(2). https://doi.org/10.24014/jp.v12i2.3235. DOI: https://doi.org/10.24014/jp.v12i2.3235

Williams, E. M., Lorig, K., Glover, S., Kamen, D., Back, S., Merchant, A., Zhang, J., & Oates, J. C. (2016). Intervention to Improve Quality of life for African-American lupus patients (IQAN): Study protocol for a randomized controlled trial of a unique a la carte intervention approach to self-management of lupus in African Americans. BMC Health Services Research, 16(1). https://doi.org/10.1186/s12913-016-1580-6. DOI: https://doi.org/10.1186/s12913-016-1580-6

Zhao, Y., Zheng, Z., Pan, C., & Zhou, L. (2021). Self-Esteem and Academic Engagement Among Adolescents: A Moderated Mediation Model. Frontiers in Psychology, 12. https://doi.org/10.3389/fpsyg.2021.690828. DOI: https://doi.org/10.3389/fpsyg.2021.690828